Together Forever

Joan here..."Feb 1 st today, yes...4 years"

2012-02-01T22:06:00.002-06:00

Every time a day that has a significant memory attached to it is coming up I can feel a dip in my being. I get sad and I just mope around! I don't even have to look at the calender. It is just there. I start to mourn. When that happens to me I just go to the calender and check the date and yep....it has meaning!

It is 4 years today that my Ricki was diagnosed with ALS. If you read our blog archive about that day you will see how that day changed our life forever. That day we knew it was the worst day of our life but we had now idea what it would be like to walk it out and what would lie ahead for us!

And now here I am 4 years later from that date, on my own with Ricki gone and the worst has come to pass. It is still like a nightmare of sorts! How can one prepare for the road that lays before you when you are diagnosed with a rapidly progressive terminal disease? In plain English...You Can't! It doesn't matter what kind of disease your loved one is diagnosed with, no one can grasp it!

All I can say is that you just learn to walk it day by day...why? you just don't have a choice....when you are so deeply in love all you can think of is how are we going to walk this through together.

Even when you are handed the death sentence you still have hope....hope that you can over come this...maybe, just maybe it will go away...In our case, it did not go away and everything they said about this horrible disease came to pass. Rick lived 6 months beyond what the prognosis was. In this disease that was a miracle!

We cherished every moment we had together. Even if it meant we could just only look at each other and smile and whisper to each other sweet nothings we knew it was an incredible blessing and gift. My dear husband could talk until the end and that is what he believed God for and that is what we had!!! For that he and I were so grateful for!!!!

It is like and incredible dream to me...so numbing....so unbelievable but yet so real as I have to face each day without my beloved!!!!

I will never forget each moment of that day Ricki what we went through together! And yes Ricki, I am so glad that we "liked" each other!!!!

Love you forever my sweetheart!!!

Joan here..."Thank you my friends"

2012-01-15T16:12:00.003-06:00

Thank you my friends from"Canada, United States, Germany, United Kingdom, New Zealand, Russia, Japan, France, Ukraine, Australia." It is so nice to hear from you all! I wish you all the best in this New Year 2012!!!!

It is so amazing how the internet can link us all together! If you have landed on this site because of someone you love that has ALS please let me know. My heart goes out to you!!!!

It is -2 C and snowing here right now.

So if you are living in a warm sunny climate take in all the rays you can for the rest of us!

Joan here..."Jan 16 th Check out CJNU 107.9 FM Winnipeg"

2012-01-14T23:21:00.005-06:00

This month the ALS Society of MB is the major sponsor on the CJNU 107.9 FM Winnipeg Radio Station. They play 40's, 50's and 60's music. CJNU 107.9 FM Winnipeg is a non profit radio station. Nick Drobot aka Elvis sang a couple of songs Friday at 1:00 pm the 13th of January.

It was amazing that it was on the 13th. It is 17 months to the day that Rick has passed. Here I was sitting by the computer with Rick's dad and mom and listening to Nick sing and speak. I knew Rick would be so proud and grateful for what Nick was doing in his memory!

If you get a chance listen to the radio on CJNU 107.9 FM Radio Winnipeg Monday 9:00am. I will be speaking for a few minutes in regards to the ALS Society of MB.

If you live outside of Winnipeg or anywhere else in the world you can get it on computer by clicking on the link then clicking on a media format that works on your computer. http://www.cjnu.ca/feeds.shtml If you live in MB and have MTS TV it is on channel 725.

I pretty much have stayed away from being involved as my emotions are still very raw. I know in time I will totally immerse myself to help promote awareness and support when it comes to ALS. I just needed some time to work through my own pain. I have heard too many horror stories about people jumping right into things when a loved one passes. They bury themselves in doing and keeping busy and then all of a sudden down the road it all crashes down on them.

I have been told and I keep telling myself it is okay to take time off to grieve for however long I need. I remember years ago a woman I knew lost her husband in an tragic car accident in her 50's. When she was in her 70's it all came to a head. She became so depressed. It wasn't until she allowed herself to grieve that she came out of that depression. She also started to talk and talk about the life they had had together. I never forgot her and what had happened to her.

Rick and I hosted so many parties and gatherings over the years. We would go all out with the food and decorating and on and on. Since he has passed I have just stayed away from it all. There is no joy in any of that for me right now. So anything that I do these days I look at it as a step forward no matter how small the step.

Joan here..."Happy Birthday Ricki"

2012-01-11T00:33:00.004-06:00

In earth years it would have been your 59th birthday today Ricki! It is so hard to wrap my head around the fact that another birthday is here and that you have been gone for 17 mos on the 13th which is this Friday. That means you are spending your 2nd Birthday as a spirit being! Free from pain or sickness!

I was imagining this morning how Rick you are probably being surrounded by all our loved ones who had passed on already. I pictured my dad talking to you about his latest invention ideas while you sat there encouraging him. I imagined you sitting in a boat fishing all the while you filling in your grandmas and grandpas on the latest news and catching up on their lives since they passed. I tried to visualize you getting to see and finally hear my grandpa's belly laughs and creative humour. I am sure his belly laughs echo through the heavens. I even imagined you having a cup of tea with grandma, and then you reminiscing with all the aunts, uncles, cousins, friends and neighbours and even getting to know the two brothers and sister that I never had a chance to get to know.

I imagined the host of all these departed loved ones gathering from all corners of the universe in the spiritual realm to celebrate not your earthly birthday but you just being with them. All the while all of you knowing how sad we would be feeling here on earth today because we all miss you so much!

As I daydreamed...my imagination grew and grew....I imagined how God would be giving you the biggest party ever! Choirs and choirs of angels singing, decorating the pearl laden room for you with real stars, everything full of the richest brightest colours that none of us have never seen before and the party room stretching out as far as one could see. Hey, maybe even Elvis would give you a special song!

Then I imagined you Rick looking around at the magnificent and awesomeness of God and His love for you and at that moment how you would be falling down to the ground and giving glory to God for the "present" that HE had given you and you had received while you lived on earth. And it is only now that that this present was being manifested in an ever eternal revealing way. .. because of the gift of eternal life through Jesus you were now in front of the King of Kings and Lord of Lords and that you could live now forever in health, happiness, wholeness and love for all eternity!

Rick you are so lucky as you now know God's plan for you in its entirety! I tried to imagine the joy on your face now in your new home, new surroundings and now experiencing the depth, breath and height of God's love!

I then imagined the moment that I would once again see you face to face my darling!

When I feel sad and missing you Ricki so much especially on these earthly remembrances of our special days....How can I not rejoice and be thankful to God for what HE has all done for especially you my darling Ricki!

You are so loved and so missed but I so rejoice in knowing who you are now all hanging out with!

Here's from earth to you darling Ricki..."Happy 59th Birthday!" I Love you!

Joan here..."Another Christmas come and gone"

2011-12-27T21:55:00.006-06:00

It is so hard to believe that another Christmas has come and gone without being with my sweetheart. All I keep thinking is how wonderful it must be at this momemt for Rick to be enjoying and experiencing all the wonders of what God has had waiting for him all along. Rick is alive in a new way and in an indestructible body where sickness and pain can not live in! Wow!!!

Wish I could say it was the same here on earth but it is not yet to be. So how does one fill in that time? Hmmmm......... I haven't figured that out yet. It seems to be a moment to moment, day to day, week to week, month to month and now a year to year process. I have concluded though that the ones left behind have a much more difficult walk as we have to work through the grieving process. The greater you love... the greater the pain! Hmmm... so does that mean then to be on the safe side we should not love so deeply as it would be easier?

Earth is definitely a refining pot and a melting pot of sorts. As much as it has been lonely, hard and painful at Rick's passing on I would not change the time that we had together! He is my hero!!! He was the most loving, kind and gentle man I have ever met!

I have been reading a book called "When the Body Says No: The Hidden Cost of Stress…" By Gabor Mate, M.D. Rick's uncle recommended it. It has a chapter in it that talks specifically about ALS. A very thoughtful and interesting read. Rick's uncle's late wife and Rick both passed away from ALS. They both had similar earlier life experiences and dealt with them in a very similar fashion. This book also mentions other diseases ie MS etc. The book considers an emotional component to a disease not just a physical one.

Rick always kept his cards close to his chest. He would just flash his great big smile and make you feel special. I had known Rick for years before we got together as a couple but would not have ever guessed how he was really feeling inside. He would ask me many times to just go for long drives and long walks and he would talk and talk about his life. He would always want us to snuggle holding me ever so close. At first I was almost shocked at what I was all hearing as he opened up. We trusted our hearts and beings with each other!

I wish that for each of you reading this blog that you too could bare your heart and soul to your mate. That there would be nothing the two of you couldn't talk or share together. That kind of love comes with a warning though "Enter at your own risk...This may be the most painful thing you will ever experience should one of you pass on!" but I can say it is worth every tear!

This year I have experienced the love, the tenderness, the mercy of God in my sad, lonely and dark hours of missing Rick. For that I am so thankful for!

Where do I go from here? I have no idea! It is still day by day, month by month, year by year!
And as always.....
A toast to you my dearest Ricki, here's to one day sharing Christmas together once again, I Love you!!!!

Joan here..."It is 16 mos today!"

2011-12-13T18:55:00.002-06:00

The cemetary is a place that I know is not where Rick is, but a place where his bodily remains are. It is a place where for some reason every year he would want to go and tour around and tell me the same stories of the people he knew who had passed on. He would always go there and toast those loved ones that had once walked the earth. The last time he and I went there was when he went to see his tombstomb for the first time. He had picked everything out.

He could barely walk with his cane around the cemetary. I have a video tape of him doing this. I cried the whole time I was taping it as I knew the next time I would be here Rick would be laying under his tombstone.

So hard to believe that this has all happened. I have been living in a total fog this past year for sure. Emotionally dysfunctional too boot as you can well imagine! My whole world has been shaken. Until you are put in that position it is totally impossible to even begin to comphrend it at all.

I am still in a spot in my being that I don't know what I want to do to fill in the time. It is really nice being surrounded by people who loved Rick as I did. That always brings me so much comfort to talk about his silly quirks, his great humor, his tender heart, his compassion, his romantic ways, his special surprises.

Every time that I hear of someone losing someone who they loved and were so close too I just go into a tail spin as I can relate over and over again to what pain they are going through.

I keep going through one box at a time.....and believe me it is only one box at a time...as they are filled with such memories that it is overwhelming. I opened one of Rick's many cards that he had given to me and found this typed note in it. It would have been one he would have typed just before he lost his ability to type. I don't know where he found this on the internet or who wrote it originally but it was addressed to me...
To Joan,
"Love never disappears, for death is a non-event
I have merely retired to the room next door.
You and I are the same; what we were for each other, we still are.
Speak to me as you always have; do not use a different tone; do not be sad.
Continue to laugh at what made us laugh.
Smile and think of me.
Life means what it has always meant.
The link is not severed.
Why should I be out of your soul if I am out of your sight?
I will wait for you; I am not here, but just on the other side of this path."
All my love, Your husband Rick

You can imagine the tears as I began to read this. I am so thankful for the time we did have together even though it is so painful now.

Joan here..." 15 months"

2011-11-13T15:57:00.000-06:00

I can't believe another month has come and gone! We have a bit of snow and winter is around the corner to stay. It was wonderful to spend time visiting family. I spent some wonderful time with some of my cousins out west. They toured me all over!

I really enjoyed visiting with my elderly aunt also. Who knows if I will ever be out that way again to see her. The tears just rolled down my cheeks when I saw her again. So many fond memories of my childhood rolled back into mind.

The last time I was out that way was when Rick and I had gone to visit out there. Once again very bitter sweet!

Joan here..."14 months into the rest of my life"

2011-10-26T18:11:00.004-05:00

14 months after my sweetheart Ricki has passed and how am I doing? Hard to answer that as it is so multi faceted! There isn't a morning or a night when I don't say good morning sweetheart, I miss you so much! and good night to my sweetheart Ricki---I miss you soooooooo much!!! I could cry at the drop of a hat as they say when I really stop to think of him! When I come into my place the first thing I do is say "I am here honey!!!" as I look at his picture standing on the kitchen counter.

I have the hope, the assurance and the confidence that we will see each other again one day and that is what keeps me! I thank God for the teaching I received early on in my life that has enabled and empowered me this way! God is a good God! (Thank you Jim Richards for that teaching!!!)

I have been trying to bring some organization to my stacks of unpacked belongings. Each time I open even the smallest of boxes I go into a tail spin. Each box has memories and treasures that belonged to Rick, things Rick and I shared together. I unpacked a box that had Rick's sunglasses and favorite sun tan lotion tonight and I just cried and cried as I held these precious things in my hands. So many beloved memories. The suntan lotion was expired but how could I get the courage to just throw it away? It was a bottle that he chose and he bought! If I threw it away was I just throwing Rick away? the memory of Rick away? Crazy you might think but that is the process of what my mind was going through!

The sunglasses and the sun lotion all have memories attached to them. I really think I can understand on a very small level what hoarders go through when they depart with their "stuff". Each item has a moment...a memory of a time attatched to it!

I attempted today to try and start a serious sort through some boxes. I just couldn't. I stood there and sobbed after opening just the first box! I know....why should this be so difficult??? but until you go through it you can't even imagine! Before this I know I couldn't that is for sure! It is like if I unpack this box and sort through it then I will never have another box to unpack again of Rick's. It is so difficult to explain! Even in writing this I know that God is bigger, that this is only "stuff". I know in my mind but my heart just screams something else.

To all of you who have lost loved ones who where close to you I know you will understand what I am saying here. Never would I have ever dreamed what it is like to be separated from your soul mate, the love of your life, the one who was always there for you, the one who always encouraged you, the one who always said you were so beautiful even when your hair was a greasy mess and you were wearing grubby sweats, and looking haggard and tired! A toast to you my darling beloved Ricki!!!!!!!!! I miss you so much!!!!!!!

Joan here..."Some clips from our Nick Drobot aka Elvis ALS Fundraiser"

2011-09-30T22:17:00.004-05:00

For all you Elvis fans....

Here are a few clips from the ALS Fundraiser night with Nick Drobot aka Elvis! Enjoy!

http://www.youtube.com/watch?v=lDXlxUp6BQk&feature=share

Joan here..."Elvis will be in the Building again this year!"

2011-09-10T21:48:00.003-05:00

ELVIS is in The Building!!!

Friday, September 23rd
Time: 7:00 pm - 12:00 pm
Masonic Memorial Temple
420 Corydon Ave (Confusion Corner)
Tickets $50.00 each - $25.00 tax receipt

For Tickets or info call:

Sharon at 831-1510 email: HOPE@ alsmb.ca

Brian at 837-1270 email: bcampbell@alsmb.ca

A special evening with 50,60 & 70's music provided by Amie's Music Servies, "The Colonel's" Auction of HOPE, and two performances by Nick Drobot "aka" as ELVIS.

Joan here..."A short video clip on the cause of ALS"

2011-09-04T22:10:00.002-05:00

Amazing new information on what causes ALS!!!! Also a short video clip. http://www.northwestern.edu/newscenter/stories/2011/08/siddique-als-breakthrough.html

In posting this I am aware that this is coming too late to help my late husband and dear friends who have lost their loved ones to ALS. The hope is that in the near future no other families will have to endure the ravages of this disease. A cure is on the way!!! Thank you God for all the dedicated men, woman and children who had a part in all of this in their own unique way of contributing!

I am sure Ricki, Brian C, Bill G, Phil W, Ken S, Brian M, are all rejoicing about now that something is happening in finding a cure for this disease. Us wives are missing you guys down here big time!!!!!

Joan here..."Thinking of you Darling on our special day!"

2011-08-28T21:54:00.005-05:00

Keeping busy is probably the best thing a person can do instead of sitting back and just feeling sorry for oneself. Today was Rick and my Wedding Anniversary Day! We had planned to spend many many years together. Our wedding day was a beautiful sunny hot day just like today. I thought about many of those special memories today! I laughed out loud just thinking at how we slept in the next morning and just about missed our honeymoon flight!

In keeping to try and do something on those special days...I enjoyed a wonderful supper out with my nephew. The waitress suggested a "Guinness" beer of all things. It took me by surprise especially today being our Anniversary Day as Rick would on special occasions order one. So guess what I ordered? Yep, and it was very special and dear to me! And to tradition toasted my darling beloved husband!

I must say I have kept really busy this summer and I dread the cold that is coming around the corner. We have had one of the most glorious summers after such a drawn out winter.

Widowhood is definitely not a club you would want to join at any time. Remember to hug your loved ones and tell them you love them while you still can! I can't emphasize that enough my friends!

Joan here..."One of the most difficult days of this year!"

2011-08-14T00:20:00.004-05:00

Well, it arrived today! August 13th, the first year anniversary of your passing away! The day I have dreaded for weeks now. It has been one long, lonely and scary year is all I can say! First of all, I can't even believe I made it one year without you Ricki being physically here! I know you have been here with me in spirit!

There were times when I thought I would never ever make it! I just wanted to die and be with you!!! Most of this year has been a roller coaster ride and one great big blur! The only thing is I have been on more downs than ups!

For awhile now I have been thinking... how am I going to spend this day? How does one even begin to prepare for this day? I have been reading where it helps to really make a plan on doing something.

I usually try and go to the Sperling cemetery each month and bring some flowers to your grave. I missed June 13th as I was in Calgary at the ALS Walk with Uncle Keith so I went a week later. This month was so different as it marked the first year without you my darling Ricki.

I drove to Sperling and picked up your parents. We went out and had lunch together and then off to the cemetery. I know it is only your earthly remains there not where your spirit is but it is a contact spot of sorts. We spent time there your style Ricki! Every year you and I would go there and you would toast your grandparents and friends who had passed on and tell me stories about them all. Here we were today there in remembrance of you!!!

All of this is still so numbing and unbelievable! I don't think I will ever get over the horror of seeing what you went through during the course of your fight with ALS right before my eyes. Rick you were such an incredible brave and wonderful husband. You touched people's lives without doing anything more than flashing them that great big smile of yours. You always accepted people where they were at!

In all my life I have never met such an amazing man. In saying that, were you perfect? NO!!! You and I always laughed about that. What we had together was amazing!

I miss our talks, walks and just being together. I miss "Joan, what's the plan?", "Hey, Babette!", and I never thought I would say this....I miss your singing.

I miss you out of the blue taking my hand, holding me close, looking into my eyes and just start singing to me songs that you would make up about your love for me. Anyone who knows you knows that singing was not your gift but you would just unashamedly sing to me. Oh how I miss those times and those songs!

I miss your spontaneous dancing anywhere with me,

I miss our looking up at the stars together on a bright clear night,

I miss your incredible hugs, tender and passionate kisses, watching our favorite shows, listening to our favorite songs,

I miss being able to make plans to what we were going to do to improve the house, yard and garden,

I miss driving to work each day together and reading the newspaper to you while you drove, I still can't believe how you managed to stay on the road while having your arm outstretched and holding my hand all the way to work and back from work as you drove!

I miss us cooking a new dish together, I miss the great bargains you would find in the meat department.

I miss you always reaching for my hand as we walked or drove, or putting your arm around me.

I miss your great big grin,

I miss when I am discouraged your words "Babette, it's you and me together and we will make it!"

I miss the weekly bouquet of fresh flowers you would always bring me,

I miss the sweet little love notes,

I miss the daily morning showers where we always washed each other's hair. Because you were so tall you would always kneel down so I could easily reach your head. I miss the many times when you were on your knees how I said that was how a man should always be in front of a woman and how we would laugh about it.

I miss our nightly Jacuzzi bubble baths and how we would sit in the tub for hours talking about the day.

I miss your getting up each night and heading to the fridge to get a mid night snack.

I miss our weekly stop at KFC to get a bucket of chicken. I would eat one piece and by morning you would have eaten the other 8 pieces. You would never eat the skin and there would always be a pile in the empty bucket in the morning.

I miss the morning coffee that you would bring to me in bed. I would try and bring you some and you would say no as you said you loved to do that for me. It is so ironic because when ALS took away your ability to do that I got to bring you our morning coffee.

I miss the once a week you would paint my toe nails. You would tell me how no matter how old I would be you would make sure that my nails would be polished. I am not quite sure how you are going to keep that promise now but I am holding you to it!

I miss the many hours of sitting in a boat fishing together, the snorkeling and swimming skinny dipping style, and all that went with it!

I miss your funny little sayings, your stories, your laughter (we used to laugh and laugh together), your freedom to cry,

I miss everything about you Ricki!!!!

Even though this has been the very worst year of my life I am trusting and believing God that this has been the best year of your life!

I go over and over the words you spoke to me when we said our last goodbye here on earth, I look forward to that dance! You are so cherished, loved and beyond words missed!!! I love you so much!

God please give Rick an extra special hug today from me and take incredible care of him! I am believing you are running, jumping and exploring the universe Ricki without any limitations of wheelchairs, feeding tubes, bipaps or having to have enemas and for that I am so grateful! Forever together your Babette, xoxox

Joan here..."My deepest sympathy to Erin and family!

2011-08-12T23:00:00.001-05:00

Rick and I became internet friends with Bill and Erin from New Zealand a few years back. Both Rick and Bill had ALS. Bill was diagnosed in September 2007, just 5 months before Rick was diagnosed. I don't even remember who found who on the internet but we did connect as they have had their own blog also. They have meant so much to us as a couple!

Bill recently unexpectantly passed away. He leaves to mourn his incredible wife and three children. When I heard the news I just sobbed and sobbed for them all. Their new journey begins.

Sending big hugs from way out here across the pond to you Erin and your family!
Please keep them all in your prayers!!!!

Joan here..."Baby Cyrus is here!"

2011-06-28T23:12:00.002-05:00

I am so excited, baby Cyrus George is here! Today was his grand arrival! I tried to upload the pic but it didn't work.

He is such a sweet and wonderful little baby! Welcome to this world little Cyrus...I love you so much!!!!! My daughter Jen has 4 children now! 2 girls and 2 boys and informs me that the tubes are offically snipped! Can't say I blame her!

More news, Tia and Katie are going to be awared with the ALS Edmonds Award this week. How wonderful is that!!!!

I am still up and about working and trying to keep busy. Life is not easy and will never be but I am keeping busy!

Thanks for all the luv and kindness!!!!

Joan here..."10 months"

2011-06-16T22:47:00.004-05:00

Well...I did it...last minute decision to go to the ALS Walk in Calgary! All the stars lined up!!! I went out to Calgary to walk the walk, the ALS Walk in memory of Rick and Aunt Christine. I met so many wonderful people. One of the most amazing moments was when I came face to face with the incredible lady who made Rick's urn for him. She still doesn't get it I think how wonderful that was for us. We really felt God had a hand in it! We did not have to leave Whitemouth to find one and it was hand made and hand delivered to us by Uncle Keith.

This past week was 10 months since I have talked to my sweetheart face to face, celebrated a milestone birthday without my sweetheart, gone on my first trip since Rick has passed.

This incredible lady, Ida, not only did that for a stranger but when I was out there took me for a ladies lunch at an incredible spot...muscles and all we got to indulge in!

I met so many wonderful people. The day before the walk, Uncle Keith and myself hung the sponsors banners in the cold and rain but we did it. The next day was so warm outside. We had the honour to take down those same banners! lol I had the pleasure and honour to walk with Uncle Keith's family, inlaws and friends on the walk.

I spent a couple of days being toured around by Uncle Keith through all the Calgary's finest. Met so many of his wonderful friends. Went to a church choir concert which was so entertaining.

This was my first away time since Rick has passed. Yes, it is always bittersweet!

As tradition would have it...I was in the air flying on my birthday once again...only the first time without Rick!

When I landed my cousin Jill picked me up and drove me to the car. From there I drove back and met my sister for a surprise birthday supper out. Well.........once I got there I was so overwhelmed by all the people in the restaurant waiting for me to arrive. What a "bittersweet" birthday...my first one, a big one, won't say how big, without Rick! Rick and I actually talked about that last year that he wouldn't be here this year. At the time we both had cried.

Rick was more sentimental to more things than what people realized. He was alway the one that had to make sure we did something on Father's Day. We went out to Sperling along with the kids and surprised his dad the last time he could get out and about. He instigated lots of things but always from behind the scenes.

My husband was a leader but lead from beside you...not in front of you! He was a team player through and through!

I took so long to post this even though it was written because I didn't have the pics uploaded yet. But hey, forget the pics up it goes!

Joan here..."One of those days!"

2011-06-07T17:07:00.005-05:00

An Outie??? how can a person smile after having a feeding tube operation??? That was my Ricki...positive...and thankful to be alive and to have something in place for when he could no longer eat because of breathing difficulties...I have never met a person in my life like him!!!!!

Today is a day where really all one has to do is focus on the really good stuff!

I am so pleased to be able to thank so many wonderful people once again who continue to contribute in memory of Rick!!!

First of all I forgot to mention "Kathy I." of Whitemouth who so faithfully once again put in so many long hours in helping Jake and Val and the girls with the ALS garage sale!!!

Secondly, all the wonderful businesses....I hope I have all the info...I don't want to miss anyone...check out the links on the right hand side of the blog.....Universal Media Studios (All types of Media Duplication), Tint Marketing (Printing), and Blainey Enterprises Whitemouth.

It is coming up close to 10 months without my Ricki. So hard to believe. It will be my birthday on the 14th and the first one without my beloved husband. Yes, it will be one of those mile stone birthdays!!!!

I have been busy working. I have been busy running to the doctors....I caught a bacteria and now some poison ivy of all things! One more thing and that makes the "3"!

I have been so fortunate to land some positions that have been keeping me busy! BUSY is good otherwise a person can get lost in the sea of sadness, depression and feeling sorry for oneself!
I am continuing on seeing my bereavement counsellor who has been so encouraging and reassuring all is normal. Despite how irrational, weird and beyond! Even though a person wonders at times! I am normal!!!! Who would have thunk????
One of my little grandsons today, bless his heart, wanted to come with me....I took him out to see the tractor which was really what he wanted, but I just felt loved and wanted! Simple things right????? One step, One minute, one day, one week, one month, 9 months, almost 10 months.....hard to believe!!!!

Grateful for my cousin who DID not lose their house in Slave Lake....that was a miracle! Grateful for Jilly girl who is on the road to recovery after three operation due to P.A.D. Peripheral Artery Disease. A miracle for cousin Janet who is home and is so against all odds of ever leaving the hospital!!!! Thrilled for another little grandson to be born at the end of June!!!!

I have been met with so much favor, love and support from avenues that are always a miracle to me!!!!

Joan here..."Please pray for Jeannette and her family"

2011-05-30T23:22:00.005-05:00

Nathaniel Bushell

August 30, 2004 - May 25, 2011

It is with great sadness that I write this blog entry. One of Rick's caregivers Jeannette (you would remember her as she was so bubbly and talkative) has suddenly lost her grandson Nathaniel Bushell. He was only 6 years old. He had six sisters and was their only son. He loved animals, hanging out with his father fixing equipment, and up at the crack of dawn making coffee with his dad.

He lived in Hadishville MB. Nathaniel attended the Reynold School where Rick and I would go to speak for the ALS Walks. I was just there on May 19th for this year's walk.

His funeral will be held tomorrow, Tuesday, May 31st at 10:00 am at the Green Acreas Funeral Home in Winnipeg. Please pray for the family! They will need all the love, comfort and compassion imaginable at this time!

Joan here..."The 2011 ALS Whitemouth Walk"

2011-05-30T14:10:00.013-05:00

A video clip is posted to the right of the Whitemouth ALS Walk 2011. Thanks Brian of the ALS Society of MB for sharing the video and pics.

First of all a great big thank you to everyone who could come out and join in walking with the students at the Whitemouth ALS Walk, Jennifer Staerk and Val for organizing the event, the teachers, staff, students, the local business sponsors, and all the ALS MB staff. It is always held during the day on a Friday school morning. We even had some of the personal care home patients and staff join in.

It was so great to have Rick's mom and dad make it out for the walk. It is not easy at their age to drive the distance. Rick's dad, Wendal, accepted the donation to the ALS Society from the Lion's Club on behalf of of his son Rick. Thank you to the guys in the Whitemouth Lions Club for Bquing the hot dogs & for your donation once again!

Thanks to all who came out and supported Tia and Katie's garage sale before and on the day of the walk. It was a huge success once again. I don't have the final totals yet.

The day of the walk was cloudy, windy and cool but all our hearts were kept warm by our memories of the inspirational and wonderful man that Rick was. He walked the walk and you got to know that he was walking with us!!!

A bit of background....The students go into the community each year and get sponsors for the walk as well as any family and friends joining in. The ALS Walk was first started in Whitemouth in honour of a school teacher, Louise Lamaga who had ALS, by her daughter Lorraine.

Rick at the time was just diagnosed with ALS. We were still living in the city and were told about this walk. So we went and joined in. Here Rick was a person who was actually living with the disease standing right in the midst of them. That is when the students and community wrapped their arms around us. After that each year Rick and I would share with the students at their ALS Kick Off Rally. Year to year the students would see the progression and the never ending need for costly specialty equipment first hand.

This year was exceptionally difficult emotionally for everyone. It was the first walk without Rick and it was very painful. A couple of days before the walk I was looking for Rick's memorial video as I was asked if they could play it before we started the walk. While looking through my pile of videos I just happened to pick up one and started to play it. Well....the flood gates of tears and raw emotion bubbled up out of my being!

Rick and I just had so much compassion for anyone that would have to go through what we were going through. Early on I searched the Internet, libraries etc. for any kind of information to better understand what we were going through and would go through. We needed information on the physical and the coping challenges that we were just beginning to face daily. We needed information directed specifically to the diagnosed person and to the caregiver but not just from the clinical textbook perspective.

Believe me at the time there was not too much out there that we could get our hands on. I sure can understand now that people are in so much emotional pain just trying to cope with the ravages of this disease that they don't have much time or energy to document what is happening. Because of that initial need for "down in the trenches, in your face, nothing barred" kind of information Rick and I began our own little private quest. We were going to share our ALS walk whether it would be by talking, blogging or video taping!

It has had many benefits and many not so good benefits. Especially, on days when you are overwhelmed and discouraged and ready to throw the frying pan across the room! Not pretty!!!

Anyways, I went and taped hours of footage. Nothing was ever preplanned or discussed beforehand. I wouldn't even know when I was going to go and get that camera. Everything was serendipity and serendipitous!!! Another one of Rick's favorite words!

Rick would just flow as the tape rolled. Another one of his famous sayings was "I never met a mike that I didn't like!". Looking back it was a great outlet for him to be able to express himself. Until now, I just have not brought myself to go through any of those tapes. So watching this video for the first time the other day was so heart wrenching but exhilarating! Heart wrenching to see my sweetheart describe what he was feeling and going through and exhilarating to see him and hear his voice again! I could hear him tell me he loved me, calling me "babette". There was so much pain and yet so much gain!!!!

Moving along here.... I was not too sure about the intensity of emotion this video would or could possibly evoke in the students watching and listening to Rick's raw frankness of what he was dealing with. So I had a longtime friend of Rick and mine, Sillypuppy, put together a copy of a segment of the footage. This particular tape that I watched has many segments in it, first segment is one of Rick laying in bed talking about many things, the next segment is the one that I chose to share with the students, and then the last segment is where he sees his memorial stone for the first time out at the cemetery.

Every so often I will try and muster up the emotional courage to pull out another video that I taped of Rick but I usually convince myself not to do it yet. At the time I was so focussed on taping Rick that I wasn't always aware of the complete content of what he was saying. So for me it is watching for the first time.

In our relationship Rick was very comfortable to just talk and talk about anything and everything. It is another thing though to have a camera aimed at you when you are going through gag reflex moments, emotional lows, and being open and spontaneous about it all and not knowing who was all going to be watching it down the road! He was so brave to be so volunerable! This one particular segment is exceptionally emotionally revealing. You feel his grieving, his body loss, his pain! It just tears at your heart!

I always told him he had the gift of being a teacher. Rick knew how to explain things in a way we could all understand. He always brought in humour so it made the difficult issues somewhat more easier to accept because he made you laugh. You can really pick that up on the tapes as he explains what is happening to his body and how he is coping with the disease.

Anyways, I took this segment of the tape and headed straight over to the ALS Society of MB to get their opinion if it would be appropriate for the ALS Walk presentation. They were impressed and somewhat surprised at the emotional content of the tape. Diana asked permission to use some of the clips for training and educational purposes in some upcoming videos they will be producing.

Rick and I always hoped that somehow we could be a source of support and help for others with ALS. Who would have thought that some of this footage is exactly what they have been looking for! Who knows...someday Rick maybe be travelling and teaching all around the world and affecting people's lives for many years to come! and it didn't even cost a cent...it costs a life...his life!!!

Thanks Sharon Carter for your special words to my heart!!!!

Joan here..."Please vote for Tia and Katie"

2011-05-24T23:51:00.003-05:00

Tia and Katie just got nominated by Jennifer Staerk in a contest. They could win some cool prizes.

Please go to www.qx104fm.com/Showcase/countryscoolestkids/Browse.aspx and vote for Tia and Katie. (It will allow one vote only per computer). Thanks!

Don't forget the ALS Whitemouth Walk this Friday and the continued Garage Sale Fundraiser on Friday also. Thanks!

Joan here..."Tia and Katie's ALS Garage Sale Fundraiser"

2011-05-21T18:40:00.013-05:00

The big question this year was it Tia & Katie or Katie & Tia's ALS Garage Sale! :)

Rain or rain....the girls just kept on a going! Long weekend and rain and rain....what a combination! They have not met their goal yet but wow...they are well on their way!!!! They are determined to meet their goal so the garage sale will be continued on this Friday 9:00-4:00.

It is also the day of the ALS Whitemouth Walk so before or after the walk you can always drop in at the Curling Rink and check out the garage sale stuff!.

Here is Katie doing her favourite thing at the sale! Taking the cash!!!!

Thank you every one for your great donations- items to sell and cash donations!!! Everything is so greatly appreciated!!!! It was so wonderful to see everyone today!

Here is one for the books on garage sale shopping that happened today...without mentioning any names... I had one lady who came up to me and said "is this ever nice" in reference to an item she was holding in her hand. I agreed. Later on after she bought it and left Val came over to me and said.....Joan she was the one who donated it!!!!!!!!! Now that is a gotcha....I call it "garage sale fever!" lol

Don't forget The ALS Whitemouth Walk is this Friday leaving from the Whitemouth School. If you can't make the walk and would like to sponsor Team Rick Fewster please go to the ALS site http://www.walkforals.com/ . Thank you so much!

Joan here..."Prawda/Reynolds School ALS Walk"

2011-05-19T23:53:00.005-05:00

Why does everything have to be so emotional and bitter sweet this first year???? Another first. Rick spoke to these same students last year and wooed and awed them with his fancy power chair spins etc. Here I was alone without him this year on the walk. Yes, there were lots of memories and lots of tears!!! Reynolds School in Prawda has been dubbed "The small school with a Big Heart!". Well that is exactly what I experienced today from them!!! Not only in their financial support but in the way they opened their hearts!!!

The Whitemouth School, Reynolds School and Beausejour Schools are going to be the most educated students on the subject of ALS!!!! They have all opened their hearts to us!!!

There were a couple of really special things that happened for me today! First, one of Rick's home care workers, Julie, showed up. It meant so much to me. From the first moment she entered our space (at first it was so difficult to have any help come in, Rick and I felt like we were giving up so much of our personal space and we both resented that) we knew she was quite the gal! She walked in and the first thing she said is the sanitizer bottle I had at the door didn't have enough alcohol % in it for being really effective. That was our intro to Julie!!! Well, we knew after that we had someone who would challenge us to excellence!!! Yes, she was right!!!! The dollar store stuff is okay but not when you are fighting what we were fighting!!!!

It is always so wonderful to me to talk with people who loved Rick. I love to talk and talk about Rick!!! Julie walked with me and we talked. She was there and saw on a day to day basis what this disease was all about. She had previously cared for Louise Lamaga who also had ALS. Julie saw how we had to fight it every day. She saw Rick and I in the trenches!!!! She brought such joy to my heart!!!! We had such wonderful home care workers for Rick. Julie, Carol, Jeannette & Debbie helping me care for my darling husband. It was just sooooo good to see her! I don't know if you ever read this blog Julie but THANK YOU from the bottom of my heart for today!!!

Secondly, A mom and dad from Wpg, a daughter and her three children who recently as November had lost their son, brother, and uncle to ALS. He was only 44 years old, married with children. They showed up at this walk in support of him! They heard about this walk and decided they would drive out and support this little school's walk as it landed on the father's birthday!!!!! Their faith like mine had carried them through this terrible time in their life!

I had the honour and pleasure of meeting this family today. We just had to look at each other and mention that we have lost a loved one to ALS and the bond is immediately there. We understand the loss, the pain and the suffering without having to say a word. The mother took some time and spoke to my inner being with words of wisdom, encouragement and grace! I felt like God himself was encouraging me!

Back to the Reynolds School. We had a cloudy day, but a warm day! Actually, a perfect day to walk. I so enjoy the students, the staff, the openness in which they embrace us all. To all the students who have gone out and pursued sponsors for their school walks I am forever grateful! You ARE making a difference in the lives of those who are fighting this fight with ALS! The money is going to research and equipment for families like myself who needed this expensive equipment. Also, it enables the ALS Society of MB to be such a support to someone who is first diagnosed.

Talking about the ALS Society of MB, I want to thank Diana Rasmussen, Brian Campbell and yes Sharon Carter (who held down the fort) today for coming out and being there once again as a source of support, strength,comfort and for continuing to spread the awareness of this horrific disease. These wonderful people have so many day to day duties to take care of never mind trying to be at each walk and and and and....the list goes on. God Bless these dear people who year after year are there for us!!!! Yes, they get paid but believe me....NOT for the hours and hours of time they put in!!!!!

I just want all of you to know the ALS Society of MB is something to be so proud of!!!!! They have been there for our loved ones, for us and our families. When Rick was first diagnosed he was given a death sentence. The neurologist as wonderful as he was told us he could not help us other than tell us Rick was going to die. Rick contacted the ALS Society of MB. and within a day Diana was at our home talking to us, reaching out to us, giving us hope that we were not alone, she let us know that there was an ALS Clinic, equipment, support meetings. We needed to hear something....our world, our life as we knew it just had just crashed!!!! THANK YOU!

When I will be what I call more "normal" ....I promise you I will do everything to help you folks more in helping with the walks, the fundraising, and and and........

If any of you want to reach out and help fight this ALS......whether it be to give of your time, talents or donate money PLEASE PLEASE PLEASE contact the AL Society of MB and say RICK sent you!!!!!

I haven't shown pics of students once again as we are not allowed to for their safety.

Joan here..."9 Months"

2011-05-13T23:45:00.003-05:00

First, I fixed the link for connecting to the ALS fundraising website on the upper right hand side of blog. Don't know what happened there. You can also get to it by http://www.walkforals.ca/ and looking up Team Rick Fewster.

Who would have thought....on the 9 month day of Rick's passing, May 13th Friday I would be in Whitemouth sharing with the students of the Whitemouth School for the 4th Annual ALS Walk kickoff rally!

Jennifer Staerk once again organized the 4th Annual ALS Walk Kickoff where the students are all handed out their sponsorship sheets for the upcoming walk on the May 27th, Friday. She has been one of those behind the scenes dedicated and amazing persons.

My granddaughter Tia put together a wonderful power point presentation on what ALS is all about. Little granddaughter Katie presented her speech to the students that she had written about her Grandpa Rick and his journey with ALS. The passion in which these girls have gone forward in keeping the memory of Grandpa Rick alive and raising funds to find a cure for this horrible disease has been so inspirational!!!! I am so very proud of them!!!

It was one of those really really emotionally difficult times for myself. First time Rick was not there. You got to know he was there in spirit! The students were respectful, warm and receptive. After I talked some they continued with our previous format where the floor was opened to the students asking questions. This is something Rick and I loved when the students would ask questions on any level. Even though we never knew what kind of question we may be asked we always tried to be as open and honest as we possibly could be.

Yesterday, was so different as I stood there in front of these students all alone. I no longer had Rick by my side. We always worked as a team and bounced the answers back and forth from each other to the students. I had moments where I just told myself to suck it up and focus and not break down. Yes, they asked the questions, How did Rick die? Did he talk before he died? Do I still have any of his equipment left? What were his favorite things to do? What was his favorite colour? They also asked some really thoughtful questions about the disease itself. The questions continued for some time. Look out ALS...your days are numbered!!!! This generation is going to do something about you!!!!!!!

I was so pleased in my heart that they were still interested in knowing all about Rick! They haven't forgotten him! I was honoured to be in the midst of this school. Once again Thank you to Jennifer Staerk, all the Whitemouth staff and students for once again opening your hearts to stepping out and raising funds to help find a cure for ALS!!!

I am looking forward to seeing all of you on Friday, May 27th for the ALS Whitemouth Walk!!!!

Joan here...."My first ALS Walk without Rick"

2011-05-07T16:14:00.014-05:00

I found this pic of Rick when he was training to scuba dive with Jake and Daniel a year before he was diagnosed. Looking back I am sure he never dreamed just a couple of short years later he would be wearing a bipap machine mask 24/7.

I am so emotional just typing this....

This is my Fourth ALS Walk in Whitemouth. It is going to be a very very sad one as Rick will only be here in spirit! I am so proud of Rick and how in his last years on earth he still tried to fund raise to help find a cure and supply expensive equipment to families. He continued to speak to the different schools in the area. He bounced around in the van sitting strapped to the wheel chair but never complained even though his energy and body were failing him!

We do not want to have anyone else go through this disease. It is more common than we think. The ALS Society truly made a difference in our lives!!! Please try and support the walk if you can in any way. Please join us if you can or support the fundraising.

ALS Walk coming up May 27, Friday at Whitemouth School.

This year's walk is in honour of Louise Lamage and my darling Rick.

There will be a hot dog bq once again as part of the fundraising.

If you would like to become a member of Team Rick, walk, pledge or all of the above. You can download forms from the site or donate on the site as well.

Please check out my site at the link at the top right hand side top of the blog.

Katie and Tia's Annual Garage Sale will be held on May 21th, Saturday in Whitemouth.

I can't even imagine how hard it will be for Jake, Val, Tia and Katie preparing for the garage sale. Tia and Katie knowing Grandpa Rick will not have his annual photo taken with them. Rick and I would always wait for Tia and Katie to do their big presentation to announce how much they made from their garage sale to Grandpa Rick.

Joan here..."A very brave lady named Mavis passed away last night"

2011-04-23T19:37:00.002-05:00

My heart and soul go out to Ron, Ted & Bernice at the loss of their beloved wife and sister Mavis. Mavis passed away last night from lung cancer. She fought and fought and fought the disease and lived beyond what they told her she would. She was a positive person and full of faith! She did everything she knew to fight it. She almost made it to her grandchild's first birthday. She followed strict diets and even went down south for all those special treatments. I had the luxury and pleasure of her calling me a couple of months ago and talking and talking. She wanted to live!

I have just passed the 8th month benchmark of Rick's passing so this news is even more grievous than ever for me. My Ricki also fought and fought and believed with all his might....he too wanted to live!

I have decided to try and keep myself busy so I won't be sitting on my kids doorsteps every week. Whitemouth is where I feel my last heart beat was. Every time I go to where Rick and I were last together I am so emotional and overwhelmed in my being. I cry driving to town and I cry leaving town. My missing him, my last memories of us there, our home at the time, I want to run into that very place as fast as I can and just run back into his arms just one more time!

The loneliness is unreal! I have gotten so sad and distraught at times. Everything I have read on grieving is confirming this is all just very normal. I have been volunteering this past few weeks and I also got myself a short term paying position. Hopefully, I will be able to focus long enough to accomplish the task that I need to perform for the time being.

I really have experienced the saying "until you walk in some one's shoes you really can't even know what they are going through". The emotional ups and downs, the brokenness, the sadness, the loneliness, the confusion, the desire to be around those you feel you can trust with your true feelings and will not judge you, just wanting others to listen to you without running around with what you have told them, having the unrealistic expectation that others will perceive and understand your needs, feelings and deep loss intuitively. It is amazing at the vulnerability, the easiness in which you can be so hurt when others "don't get it". I never "got it" either before.

If you are around someone who just lost a loved one I just encourage you to be forgiving, kind, patient, understanding and tender! Even though they maybe irrational at times, unrealistic at times, angry at times, demanding at times, lonely at times, wanting to talk and talk at times, forgetting what what was just said two minutes earlier at times.....Hey, that is sure me! And that is all part of my grieving...I know... it just plain old sucks!!!

I am missing you Ricki this Easter time...remembering us decorating and cutting out those big 7 foot Easter bunnies, cooking together, and planning the Easter hunts! All the while never forgetting the true meaning of Easter....the power of Jesus dying on the cross and forgiving us all for absolutely ALL our sins! I am so thankful that as a couple we both believed in HIS love for us!

Happy Easter everyone....Sending love and big hugs from all of us here on planet earth to all our loved ones who have gone on before us at this special time!

2011-04-08T18:03:00.004-05:00

Where am I at? Not sure if I can be really really be real about that... Here goes what I can say....I miss my darling wonderful husband every moment of the day...without exception ever!!!!!!! He is not here and I have to learn how to cope without him...."key word" "cope". I am trying to focus on other things beside me....not always easy...but I AM trying! I could cry at the mention of his name! I think that will never ever change! I am busy with trying to get family members to doctors appointments, hospital visitations, volunteering as much as I can, filling in the blanks with working at a temporary job position....just plain old trying to keep busy. As far as getting and keeping a job position it is most difficult as my concentration is so dependable on the day! I am so thankful for the various family members of Rick's family who have continued to be a source of strength and encouragement to me. They really loved Rick and honour him in every way they can! They are such an source of encouragement to me!!! Thank You!!!! It is going on 8 months and I can just not believe I made it this far without him..........I feel his presence all the time....I know he is here to help me get through this. We will be together again in eternity...he will meet me on that special park bench!!! I keep hearing his words...it will be okay "babette". When I am down and out and feeling lonely...his words come flooding back to my soul..

Joan here..."Seven Months today"

2011-03-13T18:29:00.003-05:00

Ice Fishing in Memory of Rick today....A couple of years ago my son along with a group of guys from his work organized an ice fishing trip where they would take along Rick and his dad for Rick's last ice fishing. Rick cherished that so much that they would think about him in that way. They even brought his scooter that he was driving at the time and special equipment to make it happen.

Today, Rick's 7th month, Matt one of the guys from that group and my son, with many others are out there on the lake ice fishing in memory of Rick. I was so pleased that they were doing this and especially on this day. Rick and I would ice fish each year for hours at a time and even caught a huge one that I had mounted for him. Going ice fishing for me right now is still too painful. At times just being in a group is so very hard.

The 13th of each month is always filled with such wonderful memories of my late husband Rick. I decided that I would have a very "do nothing day". If I wanted to cry I could. Just sleep till I couldn't sleep anymore. I find it hard to believe that I haven't seen Rick for seven months. The old mind just doesn't want to wrap itself around that at all!

I had another one of those very real dreams where Rick and I are snuggled together and he and I just talk and talk for hours. In my dream, I know he is gone and has just come back to talk to me and to let me know he is always aware of what is happening and how I am doing and that he himself is doing okay.

It is hard to wake up from these dreams as I just want to stay there with him.

I am so missing you Ricki...sending hugs and kisses your way!

Joan here..."Please Mark your Calendars"

2011-03-01T15:22:00.009-06:00

ALS Society upcoming events----

1. Cornflower Gala, Saturday, March 12, 2011.

Saturday, March 12, 2011

Western Canada Aviation Museum

5:30 pm Cocktails, 6:30 pm Dinner, open bar

Live and Silent Auctions

Deadline for the RSVP invitations is March 4th, Friday, 3:00 pm.

2011 Cornflower Gala promises to be one of the highlight events of 2011. Come dine, dance the night away under the planes in the Hangar of the Western Canada Aviation Museum. This event includes an open bar and a delicious four course meal highlighted by a decadent dessert table with a chocolate fountain.

Dance Music is provided by Mr. E & The Jazz Gumshoes.

The evening also features both live and silent auctions, with prizes that include a trip for two anywhere WestJet flies, a balloon ride for two, luxury stays at some of Winnipeg's finest hotels, and much, much more.

Tickets $140.00 ($70.00 tax receipt)
For tickets or information call 204-831-1510
Email: HOPE@alsmb.ca

The next two events are so hard to even post about as this will be the first year Rick will not be here in body to participate in the garage sale and walk. He always looked forward to seeing everyone each year! So please try and make it if you can in memory of Rick and in helping to prevent this from happening to some other family. Thank you so much!

2. May 21th, Saturday Katie & Tia's 3rd Annual ALS Fundraising Garage Sale
Whitemouth, MB

Katie's raised the stakes once again this year. The girls are more determined than ever to raise money in memory of their beloved Grandpa Rick. All proceeds from the garage sale go to the ALS Society of MB to help find a cure and to help the society to provide equipment. For more information or questions please call Val 348-3074 or email jvtk@mts.net.

3. Whitemouth Walk for ALS Friday, May 27th, 2011.

This will be the 4th Annual Whitemouth Walk for ALS in memory of Louise Lamaga (former school teacher) and Rick Fewster. You can download your pledge forms from the ALS website at http://www.alsmb.ca/ For more information contact Jennifer Staerk 204-348-2595, email jstaerk@sunrised.ca or Val 204-348-3074. To contact the ALS Society of Manitoba call Sharon at 204-831-1510 email HOPE@alsmb.ca or Brian at 204-837-1270 email bcampbell@almb.ca

Joan here..."The wonderful world of Skype"

2011-02-28T00:13:00.005-06:00

I have rediscovered the wonderful world of "skype". It is so nice to be able to talk to others who live far away and see them while you are talking. I have been spending hours on it lately with family from Edmonton way as my cousin Jill is scheduled for an artery bipass this week.

Because her immediate family do not live near here I have been filling in for them. Her sisters and I have been coordinating her appointments, surgery, and post surgery plans too make sure nothing will be missed in her care.

I have been busy going back and forth to Health Science Centre this past couple of weeks. It has been emotionally draining at times as memories flood in each time about the times Rick and I were there for his appointments, operation, and etc. When I see someone in a wheelchair it instantly takes me back in my mind about Rick in his.

Things like when I was pushing my cousin in her wheelchair and getting on the elevator. Remembering how Rick loved it that I always made sure he was backed in not pushed in. That way he could face the elevator doors.

I was at a funeral recently for a dear neighbour, John, from way back in my growing up years. He had Parkinson's disease. This man had a son, Jack, who a number of years ago when he was in his 30's died of ALS. Now one of his other sons, Jeff, had an aneurysm recently and has left him in a wheelchair, unable to speak etc. At the funeral his young wife was sitting next to him with their two small children.

After the service Jeff and his wife were sitting at a table where she was putting meds in a syringe to put into Jeff's feeding tube. I just stood beside them and gasped as I watched her taking care of him. I did everything to just keep myself together and not break down sobbing right then and there. My heart just welled with pain for what he and her are facing. He resides at the Deer Lodge Centre right now and can't even be home with his family on a daily basis.

I am looking forward to the day when my memories of Rick will go first to the time of our life where he was not ill and we just had a normal life. Rick is still in my dreams regularly. I cherish those dreams!!!

Please do pray for my cousin Jill, Jeff and his wife and their young children.

Joan here..."6 months today"

2011-02-13T10:44:00.003-06:00

I never dreamed I could have made it this long without Ricki. It is 6 months today since he passed and my first Valentine's Day tomorrow without him.

These dates are very raw reminders how our life together as we knew it has forever changed. These dates are a reminder of our dreams and plans that will never be. Every couple of days I still have my break down times. They usually last for a couple of days. I am finding out first hand that everything is a choice!

When I think of Rick which is most of the time....I am so amazed at how strong, brave and loving he truly was as a man even till the end! In the last year of his life I was so exhausted with just the physical daily care for him and the internal stress of knowing we may not have a tomorrow together. I didn't always see everything with a balanced perspective. A lot of tunnel vision. When you are barely hanging on to your own sanity with all the ups and downs this disease brings into your life, as a wife, I didn't have anytime to be reflective or concerned about anything other than getting Rick through his day with as much dignity and care as I could.

While going through some of our stuff awhile ago I came across a bag full of new Valentine Day Cards. I then remembered how Rick had told me he had gone out and bought me a bunch so when he was gone I would always have a new one to open each year from him. So when I found them all I did was cry and cry and hugged the package of cards. I have kept them in the bag without reading them. I did manage to count them and I have one for each year till I am 86 years old!!!!

Valentine Day for us was an "us time"! I am truly amazed how even after death he arranged for me to have an "us time". I have so many very romantic memories and times he so thoroughly surprised me with! So every year I will get to read and see something new that he had picked out for me....what a wonderful gift of love he put into place for me! It won't bring him back...but his thoughtfulness eases the pain of the loss for the day. It is something tangible!

A few lines taken from this year's card....

"...but if you're ever uncertain

of how much I care,

just "listen" to my heart..."

Missing you my dear Valentine!!!! I love everything you once were and everything you continue to be now!!!!

Joan here..."Does our passion have feet, hands or a voice?"

2011-02-02T18:24:00.010-06:00

I was so pleased to hear that Katie, our little granddaughter, had joined the 4H Club this year. As part of what they were learning this year in public speaking they each had to write their own speech in their own words and present it.

Well..... Anyone knowing Katie and her passion would guess immediately what she chose to write about! I believe she will be entering a contest and reading what she wrote. I asked her permission to share this on the blog. Here goes....

"Hello ladies, gentlemen and honourable judges. My name is Katie... and I am from the Whitemouth Community 4H Club.

Today I'm here to talk to you about ALS. Also called Lou Gehrig's Disease. ALS stands for Amyotrophic Lateral Sclerosis. ALS is a muscular disease that kills all the muscles in your body and eventually kills your heart or lungs. In ALS your brain acts like the light switch and your body acts like the lightbulb. When your brain tells your body to do something your body will respond but when you have ALS, ALS breaks the connection. ALS has no cure!

The reason I brought up this subject is because my Grandpa Rick had it. He was diagnosed February 1, 2008. ALS can start anywhere in your body. For my grandpa, it started in his legs. That is the reason my grandpa had to use a cane. My grandpa let my sister and I name the cane. We call it Max.

We knew my grandpa would need a lot of help so we renovated our house and garage into a beautiful suite and asked grandpa and grandma to move in with us. And they did! Through my grandma and grandpa we have met a lot of people. For example we met Dianna, Brian and Sharon from the ALS Society of Manitoba. They help families learn about ALS and supply equipment to people suffering from this horrible disease.

I wanted to help the people with ALS. So, I came up with an idea to have an ALS garage sale. Our first garage sale made $1,000.00 And our second garage sale made $1,637.00! This year I hope to raise around $2,000.00.

Sadly, August 13, 2010 my brave Grandpa Rick passed away. It is hard to see someone you love suffer so much. It is because of this I want to help people with ALS and hopefully one day you can too!"

****

I had the priviledge of Katie reading her speech to me and all I could do was cry and cry as I listened to this little girl express herself in the loss of her dear grandpa Rick and her continued desire to raise money to help families and find a cure for ALS.

I am sure Grandpa Rick was smiling down from heaven as Katie read her speech to me that night and so proud of her wanting to share it with everyone. She has put feet, hands and now a voice to her passion! What a challenge for me to follow!

Joan here..."15 sec commercial CTV"

2011-01-25T18:36:00.010-06:00

This pic is a pic of the Amaryllis bulb that Rick and I would plant every year for the last couple of years. He found so much joy in seeing how every year a new bloom would grow. This has just blossomed and there are other blooms that are coming up. This pic doesn't really do justice to how majestic this plant is.

Just recently I found out that they are running a 15 sec. commercial to campaign for ALS awareness on CTV Winnipeg. It actually aired today during the Oprah Winfrey Show commercials as I was talking to Rick's mom and dad. Talk about timing! Ken and Alice Simpson, Brian and Kathy Cava, and Rick and I are shown in the clip. To our great sadness and loss all three guys are gone. It is so incredible to us wives to even think they are no longer here!

I am going to try and post the link of the copy of the commercial in case you don't get to see it. www.tripwiremedia.com/client/ALS/ Allow a couple of minutes for it to buffer once you click on it.....(Click on the ALS 15 second one).

Joan here..."5 months today"

2011-01-13T20:46:00.004-06:00

As I sit and type this I glance back and forth towards the picture I have of Rick sitting on my desk. And as usual his big grin and shinning eyes catch my breath! Today, is the 5 th month since Rick passed away. It is almost half a year since I have talked to him. I have debated whether or not to continue blogging but tell myself to hang in there till the first year.

Nothing has really changed much in how I am feeling other than I don't think about Rick every 5 minutes like I did at first. I still cry but not as much or as often. I am still exhausted and I know that will take time. I definately have trouble remembering what I am suppose to do next or what had just taken place. All part and parcel of this thing called "grieving". It has really helped me having the family and friends support that has been very present in my life since Rick's passing.

I have packed up pretty much everything of Rick's clothing etc. So I only have a jacket and a pair of his slippers in the closet right now. I am surprised that I have even come this far in all of this. You don't know what is inside of you until you have to walk it. One thing is for sure, if you haven't walked it, there is no way a person could even begin to understand what it is like to lose your spouse to death.

I have been told countless times how very lucky I have been to have had such a loving relationship with Rick as that is not always the case with other marriages. That is probably why it is so hard at times as I miss our times together.

I was asked if I would be willing to answer some questions by a woman named Linda Della Donna who hosts a radio show on "Voice America" and has a web site dedicated to helping people who are grieving. The web site is http://www.griefcase.net/ . The article is located on the bottom of the page. You will recognize the picture.

More great news...Ricks daughter Colleen had a little (tongue in cheek as he weighed 9lbs 13oz) baby "Moses" in early January. Great way to start the New Year. I also found out that my daughter is expecting for this year. I am very excited as I will be able to be more available to her. It will be her 4th baby! I would not have ever believed she would have 4 children. She never was a baby person growing up!

I kept myself very busy today trying to bring some order to my place. It helped to keep my mind busy so I didn't have to do a lot of thinking. I have been writing in a journal as well and all of that helps.

Sometimes I really wonder what I will be doing and how I will be feeling when that first year comes around. I sometimes just wish the days, months and years would just fly by so that I could be on the other side of this part of the pain.

Loving and missing you Ricki....I have made it through 5 months!

"1/11/11" It would have been Rick's 58th Birthday today!

2011-01-11T01:11:00.000-06:00

The ones symbolize to me.....this year is a year of firsts!!!! 1/11/11. All these "firsts" for me are coming in absolute bunches...Christmas, New Years, Rick's birthday, 5th month, Valentine's day and on and on and on. They say the "first" year is like that!

This past week I have been very busy with a lot on my plate and yesterday I noticed I have not been myself at all...it is so bad that on my way to a friends house I did an errand and forgot that I was suppose to stop in at her place after the errand. She had been so worried about me as I never showed up. Hey, come to think of it, I haven't been myself for the past three years...

It wasn't till today as I was driving to the cemetery that I realized that the upcoming day of Rick's birthday had been really way more stressful to me than what I had thought.

Yesterday, I went and made a floral spray that I could bring out to Sperling. The flowers were each delibertly chosen. Each colour and quantity. Each flower that I placed together and taped ushered in a flood of memories of Rick and I and what it had meant to us. I know when we do this it is actually for helping US to cope in a tangible way. It allows us to give expression of our grief and love for the loved one who has passed on.....

I am so thankful that Rick's folks have been sharing with me in so many of the "firsts" without Rick. Today, we all went for lunch together. We even went to a place where we all had a memory of having a lunch with Rick not very long ago.

Going to the cemetery today had it's own bag of emotions. Every time I go there I am reminded of how Rick would always walk around the place and tell me stories of all these people that he knew and cherished. I do have a video that I took of him the very last time he could walk going around the cemetery and how I had cried and cried taking it as I knew only to well that he too would be here in just a matter of time. I can't even imagine how he felt knowing that as he walked each step around all the tomb stones. Never mind stopping and looking at his own stone and knowing what was ahead for him shortly.

A child hood friend of Rick's contacted me today. He had intended on stopping there today but had been so consumed in taking care of his own mom. She is so ill so he said had given Rick the thumbs up as he had driven by the cemetery. I know this all sounds so weird but it meant so much to me that others are so thoughtful still of Rick's memory. I have had countless emails and etc acknowledging that today was his birthday. It has meant so much to me that people continue to keep his memory living on.

It was only three years ago today that Rick spent time talking with all the kids about his suspicion that this was ALS. It would only be two weeks later that he actually found out that he in fact had ALS. That is when our life went upside down in a second.

It is only two years ago today that we had the birthday bash with Elvis! Rick was so honored by the family and friends who could make it.

It is now today, and I have had to continually tell myself that Rick is having the best, biggest most unimaginable birthday ever!!!! If I see things that way then all I can be is just happy for him! That is where I have to leave it.........."I am so happy for him that he is no longer suffering!"

Happy Birthday my dearest wonderful husband Ricki from all of us who miss and love you from the core of our beings!!!!!

Joan here..."My first New Years Eve without Rick"

2011-01-01T01:40:00.005-06:00

Last year I posted on December 31 some pics of all our family members who shared the same birthday on today's date. My mom, Rick's dad, my sister, my cousin, Well.....that list just grew longer. Rick's daughter Ella had a little daughter today. Rick's dad Wendal now shares his birthday with his great grand daughter "Nina". Rick would get such a kick out of that happening. I think it is wonderful news and an incredible thing to happen on the last day of what has been a very difficult year for everyone.

I spent the evening just doing nothing much. I was invited to spend the evening with Rick's dear cousins but it was so cold to drive out there and I have so much on my plate right now so I declined. I made a big toasty warm fire in the wood stove. It is so very comforting on a cold, cold evening to have a nice fire burning in the wood stove. I kissed Rick's picture countless times and wiped away the tears with each kiss. Thankfully, his picture in under glass.

I sat here feeling blue as the clock was ticking away and getting closer to moving forward into the new year. I was dreading the arrival of the new year as it meant it would mark the first new year without Rick physically here. He and I would not ever share one day together in 2011. I was spiralling downward with these thoughts as the clock ticked away. All of a sudden a skype call came in from our friends Erin & Bill from New Zealand wishing me a New Year!

I am so amazed how once again God uses people to be there at the right time and the right place. It brought such joy to my heart and cut through my sadness. In thinking about these friends I have been truly amazed. ALS has invaded Bill's body for sometime now. My heart breaks for them knowing what they are going through. How hard it is for both of them in each their own ways. Through the wonderful world of Internet we connected because of ALS. Through these past years we have shared our lives as we went along. Rick and I enjoyed reading their blog together. They were people just like us...people put in a spot that they didn't want to be in. Facing the tiger in the eye and desperately trying to over power it.

We don't always understand the whys or the how comes when having to deal with sorrow and pain but I have come to experience first hand how amidst all of it there is always a thread of goodness. That thread is what I have clung to. We just have to be open to look for it and that is not always easy when you are walking through the storm.

Tonight, when I got the "Happy New Year call" it was such a gift at the right moment. Here they are living on the opposite ends of the earth, right now experiencing hot beach weather, and already moving towards the end of New Years Day and I am experiencing -30 some with wind chill, piles of snow outside, putting wood in the stove, and heading into the New Year. As opposite as we are in so many areas we share in the same grief and pain of what ALS does to our lives, loved ones and families.

The friendship that we have developed with so many others in this situation has been gold! We may get knocked down and the wind knocked out of us from time to time but we share in the same inner strength and power that love gives. Because of our faith and the love for our loved ones we brush ourselves off and get up and keep on walking!

Erin, Alaina, Cathy, Alice, Joan M., Karen, Anna, and Mertia and everyone else who walked the walk of love and never gave up through this very difficult past year...May you each find an extra thick thread of goodness when you need it in this New Year of 2011!

Joan here..."Rick's First Christmas in Heaven"

2010-12-25T17:04:00.000-06:00

This picture was taken by me last year on Dec. 24, 2009. Rick's last Christmas on earth.

Another first...Christmas will never be the same! Once again for me...and everyone else who really loved him. I miss Rick like crazy! I miss the little things he did every Christmas. He always made sure he would have fresh flowers or a plant sent and a love note.

We would enjoy the pleasure of watching the annual amaryllis plant grow like crazy and bloom. We have had the same bulb for years now. I can't believe I even remembered to plant it once again and it is sure growing. It is actually a fun plant as it grows inches each day. Instant gratification! Then we would always discuss beforehand what we wanted to do for Christmas for gifts for each other. He was a very very romantic kind of guy so I got some really wonderful gifts over the years from Rick.

We usually would have our Christmas get togethers with our family early in the month of December so the kids would be free to go to the other parent's gatherings. Then we would go off somewhere for a couple of days alone. This past couple of years we couldn't do that so we would enjoy Christmas Eve with the carollers coming to the door, have a fire burning in the wood stove and just spending time together. Christmas Day Jake and Val would have us over for Christmas dinner.

I don't have a stove in our suite so cooking a turkey dinner was out of the question. That was one thing Rick loved doing was making the dressing and turkey. We loved cooking together. He would always add some of the herbs that we had grown in our vegetable garden.

This year I spent Christmas Eve with Jen, Clif and family and celebrating the news of a little one coming in the new year. Christmas Day was spent with Jake and Val and the girls. We lite some candles in remebrance of Rick. The suite is just not the same without Rick. I am really trying to do more than go through the motions of Christmas. I am very aware of being the extra person around and I don't want to take away from the kids having their Christmas with their kids. They are all so good to me but I have to learn now how to adjust to these social gatherings without my husband.

I came across this poem and I can't really find the true story of who wrote it so I will list it as author unknown.

For Rick I rejoice that he no longer suffers with not being able to walk, struggling for a breath, not being able to feed himself or even being able to hug his loved ones. He is free in his spirit to experience all that God has for him...and for that I am thankful and rejoice for him.

"My First Christmas in Heaven"

I see the countless Christmas trees

Around the world below

With tiny lights, like Heaven's stars

Reflecting in the snow.

The sight is so spectacular.

Please wipe away the tear

For I am spending Christmas

With Jesus Christ this year.

I hear the many Christmas songs

That people hold so dear

but the sounds of music can't compare

With the Christmas choir up here.

I have no words to tell you,

the joy their voices bring.

For it's beyond description,

to hear the angels sing.

I know how much you miss me,

I see the pain inside your heart,

but I am not so far away,

We really aren't apart.

So be happy for me dear ones,

You know I hold you dear.

And be glad I'm spending Christmas

With Jesus Christ this year.

I sent you each a special gift,

From my heavenly home above

I sent you each a memory

Of my undying love.

After all, love is a gift more precious

Than pure gold.

It was always most important

In the stories Jesus told.

Please love and keep each other,

As my Father said to do,

For I can't count the blessings or the love

He has for each of you.

So have a Merry Christmas

And wipe away that tear.

Remember, I'm spending Christmas

With Jesus Christ this year.

Merry Christmas to everyone and special hugs to those people whose loved ones are spending Christmas with Jesus this year!

Joan here..."4 months today Ricki"

2010-12-13T18:46:00.004-06:00

What am I doing as a widow (hate that word) four months after losing my beloved? Not much of any one thing but lots of little things.

I have been helping my mom and sisters organize our annual Christmas gathering. It has been difficult emotionally walking through it as it brings up so many memories of my past Christmases with Rick and especially of my last Christmas with Rick. Last year my family all came here as Rick was unable to go there. They brought the whole Christmas dinner and and and....lots of memories!

I just came through my first being sick without Rick. From the day he was diagnosed till now he or I never suffered from a cold or flu. So when this bug hit.....I was down for the count! Today is 6 days later and I am back on my feet! What was so incredible to me was that Rick knew I hated being alone when I am sick and we talked about when he wouldn't be here and I would be on my own. Well....it was lonely....but during this week I had numerous dreams of him. I really believe he was here for me. Not in the way I would prefer but he was here!.

Everything I do here is with so much emotion as Rick is here everywhere I look. A part of me is so fearful if I move that he won't be in my new place. That sounds so absurd I know but that is how I feel at times. There is so much comfort to me when I round the familiar bend in the highway coming into town knowing I am only a few minutes from home after being away for awhile. Will I find the same comfort if I move? Once I go...it will never be the same....I can't recreate the time, intimate moments, memories and space that Rick and I last shared together here. Is moving away from here leaving him? all kinds of questions and feelings pop up some rational and some so very not rational!

Looking back I am so thankful we had spent so many many hours together talking. Talking about him and his wishes now and in the years to come, talking about how on earth I was going to live on and how I was going to do it without him. Through our talks together there was a planting of seeds of reassurance and direction deep within my heart. We promised each other we would always be there for each other forever! ALS would not rob our love or relationship. It just would have a few new curves now. It is something that just happens deep within my heart when I need him...he is here for me! He always told me that "Joan you are the one in the whole world that really knows and understands who I am and I will always be there for you."

Today, it is 4 months since Rick has passed. Do I still cry? you betcha!!! Do I want to scream and yell? you betcha! and do I? You betcha!!! I trust God that even though it feels like it will be forever before I will see Rick again that He will make it somehow in a blink of an eye and we will be together forever once again.

I have read where I need to allow myself to acknowledge each day, month or year of your loved one's passing in your own special way. So for this 4 month milestone I chose to light a whole bunch of candles, put his picture in the middle, put a special piece he and I found in the Dominican of a man and woman kissing and completing a type of circle making them one. We had looked long and hard to find something that represented us. So it has some real special memories and meanings to Rick and I. We had found this inexpensive piece at some souvenir tienda along the ocean side and it was "us". It is such a heavy piece that I still don't know how we managed to bring it back and all in one piece.

And as our tradition, we would always have a toast. "With tears of joy my dearest Ricki that your suffering is over...and tears of deep sadness for me my love that you are no longer physically here. Keep that bench warm babe and that sea of glass clear for that dance!"

Joan here..."Opera, Griefshare & babysitting".

2010-11-21T00:59:00.004-06:00

I went to my very first "opera" tonight. I actually enjoyed it! It really helps that they have a reader board translating the latin and so you can follow the story line without much fuss.

My friend and I spent the day doing all kinds. It is so wierd though. I get this feeling like I need to hurry and get back home and then I stop and think..."what for?". That has been one of the strangest things to being on my own. I want to go and tell Rick everything that I saw and experienced like I used to. To think...I could stay up and out all night and who cares! That is so mind boggling for me at this point. This part of my life is unimagineable!

It has been so wonderful to have friends and family who are so supportive of me. I am so thankful for that. Until you go through something like this you will never know how much others can help you through the most difficult time of your life. I just want to make sure I will be there for them down the road as they walk through life.

Losing a spouse is like losing one half of your being. Rick and I were so very close. We talked about the day when he would no longer be here and how I was going to manage without him here. At the time we would both cry...but now I cry and feel the pain.... I was married to an incredible wonderful man.

This week I ventured out and went to a "griefshare" meeting. I ended up meeting two wonderful people, a pastor and his wife. We spent a couple of hours alone together sharing. I felt like I was sitting down with old friends that God had hand picked for this moment. They had had their own humps and bumps along the way and were honest about it. I felt like Rick was smiling and telling me once again..."see Joan...I told you...don't worry..everything is going to be all right!". My few hours spent with these two strangers renewed my faith in the ministry!

I get to look after my little grandson for a few days this next week. I am so looking forward to it. With Rick being so ill I didn't get to spent any time with him when he was first born so this will give me a chance to get to know the little man. Just him and grandma!

Taking one step and one day at a time. 3 months and 8 days.

"It is 3 months today!"

2010-11-13T14:29:00.005-06:00

I can hardly believe it is three months since I have seen my sweetheart! Every day is like a blur! It seems like an eternity since we have been together. I miss all those little special things each day that we shared. He couldn't do anything much towards the end but he could still talk and boy did we talk. Rick shared about his life from beginning to end, all his memories good and bad. We always laughed so much when we were alone together. He was my best friend ever!

My daughter Jen found this poem written by Constance Jenkins.

Weep not for me though I am gone

Into the gentle night

Grieve if you will, but not for long

Upon my soul's sweet flight.

There is no need for tears.

I am at peace, my soul is at rest

There is no pain, I suffer not,

For with your love I was so blessed.

I am in a place of comfort

The fear now is gone.

Put those things out of your thoughts,

In your memory I live on.

Remember not my fight for breath

Remember not the strife

Please do not dwell upon my death

But celebrate my life.

By Constance Jenkins

I miss the laughter, Rick's funny little sayings. Just hearing his voice. I hear it now but not the same. His words often say "don't worry babette...everything is going to be okay". In the midst of some of the storms in our life he would always tell me...don't worry everything is going to be okay!" I used to tell him...yeah you can say that because you aren't going to be around to deal with it anymore. He would just laugh and then would say "Well, I don't want to go, I just want to be here with you!"

I am no further ahead right now in what I am looking at doing or where I am going to live. I am just doing. Not that I want to complain as there is still so much to be thankful for. But bottom line is that I am chosing to put one foot in front of the other all the time. My feelings are pretty numb right now.

I have going through some of my computer files and came across one of the last letters Rick wrote to me and it is just so unbelievable what he wrote to me. All I did was cry reading it! I cherish each and every letter he has written that is for sure.

I have been also going through my many many picture albums of us. I can't believe how emotional that can be as each picture holds an incredible memory of our time together. We did so much during that time...wow! I am so glad for that now. We went to so many different places, met so many wonderful people, we really hit the pedal to the metal as Rick would say! I posted one of the pics I came across as I have so many memories of he and I dancing.

I am invited to a retirement supper tonight so I am going. I just don't have the "single" thing down right now. It is very stressful. I am so used to Rick and I sitting at a table and talking and being a couple. Now it is just me!

When I was in Winnpeg the last time I had a man ask me what I was doing that evening and if I would be interesting in meeting with him. Kinda like a date. I was so shocked. That threw me off...that came out of no where in my thinking. Never mind the fact that I continually look like a truck hit me... I would like to have some friends and just talk but not going out on a date that is for sure. I am just emotionally existing from day to day so anything added to that is over the top. Rick is always on my mind.

I know people meet other people and start a new life and I am so happy for them. For me it will be nearly an impossible thing. The loneliness is probably what drives people to reaching out to start another relationship. Loneliness is very real when you are used to being with someone 24/7 for years. Rick talked a lot about that to me before he died. He said he would be very jealous but he wanted me to have a life. He even talked to Jake about me having a life on his death bed and gave him specific advice, etc.

I am being very volunerable and probably stupid writing this all so I hope it is understood in the right spirit.

I have been the brunt of some pretty wicked lies told about me in the past. I have been wondering if the people who have said "God showed them such and such" ....and have said that to many people...thus spreading the untruths. Do these "in the name of God people" every go back to all the people who originally heard their lies in the name of God and admit that it actually was not God? Just a thought.

Just because people come in the name of God doesn't mean what they are doing or saying is God? Somehow, there needs to be more of a gift of discernment operating and sought after in the body of Christ before desiring any of the other gifts ie prophecy, word of knowledge etc.

The untruths spoken about another person can have a snow balling effect and when spread get more and more elaborate and outrageous in nature. So here is to seeking after a gift of discernment first! God is good! He doesn't have any other motive in HIS heart but pure LOVE! That is why when God speaks... He speaks forgiveness, redemption and love! And if that is not what you are hearing...run for your spiritual life!

Well now that I am standing on my soap box I better duck!

Here's to looking forward to eternity where we can always walk in pureness of heart! Loving and missing you Ricki!

Joan here..."Standing tall"

2010-11-04T10:10:00.020-05:00

I have been sorting through some photos of Rick and I have lots of them! The last 2 yrs are all of him sitting down. Before that time they are all of him in action of some sort. Rick's dad used to tease me all the time about me and THAT camera. It used to be a joke between us. I was snapping pics all the time. I am so glad now!!! It is true...pictures are worth a thousand words! They trigger endless memories and emotions of a time and place in our life together.

Here are a few pics of the real Rick BEFORE ALS!

Joan here..."Bye Brian Moule another ALS friend passed"

2010-10-29T18:22:00.004-05:00

This pic was the one I took of the four guys at the ALS Brummit Feasby House when Rick and I had stayed there for a doctor's appointment. This pic was taken ONLY nine months ago.

This week Brian M passed away peacefully in his sleep. He was the last one of the four guys to pass away. Brian M is the one on the far left then Ken, Brian C, then Rick. All four of them did their part in helping to further awareness of ALS.

I attended Brian's funeral today and it was the first one since Rick has passed. The group I sat with is full of the ALS widows, the staff from the Brummitt Feasby House and the ALS Society staff. It was very very difficult and I really felt for Joan, Brian's wife.

Rick and I met this lovely couple at one of the first ALS meetings we were at in 2008. Then whenever we would stay at the Brummit Feasby House for appointments we would visit with Brian M. He was such an interesting fellow. They nicknamed him "the boss". He had a love for puzzles so whenever we would go he would show us his latest achievement. We will miss you Brian M and give my Ricki a big hug from me!

This disease is so ugly! I just heard where a gentleman in my area has ALS and he actually lost his wife to ALS Bulbar 3 years ago. So as a couple they both got ALS but it affected them in different ways. It really makes you wonder if this is not environmentally stimulated! All I know is that wherever it goes it leaves a trail of dead bodies behind it!

My deepest condolences to Joan and her children on their great loss! In God we trust!!!

Joan here..."For the time being Goodbye city life.."

2010-10-25T21:10:00.007-05:00

I drove back from Winnipeg last night. I actually lasted over a week without being back which was in itself incredible. I could feel the pulling and longing to come back home though these past few days. It was so dark outside and the roads were quite isolated so by the time I got back I was feeling pretty isolated and lonely but anxious to get back to "our" place.

I hesitantly walked in to our place as I really didn't want to face the lift being removed. I found the lift gone and a new set of regular stairs in its place. I burst into tears as this was the last piece of installed medical equipment to go of Rick's. Once again bittersweet! On the positive side I can actually walk up and down regular stairs instead of the aluminum ones. Jake did a really great job with building the new stairs. When I talked to Jake about when he took out the lift he said he himself had a really emotional time removing it.

We do still have the special radio built into the wall and that needs to be returned. It belongs to Garth, Rick's bro. He had installed it for Rick when we first moved here. Not sure about all the components that go along with it though.

Back to when I arrived last night. Once I got over the initial adjustment of the new stairs in place I headed over to see the kids. Val and Tia were there and I was received with some big hugs. Today, both the little girls told me that they really missed me while I was gone. I asked them what they missed??? They said "Just you grandma being here". I sure enjoyed that comment!

My time away had me very busy....driving out to Carman, Sperling, Fort Whyte Centre, visiting and lots of fantastic evenings out with so many family and friends. They all kept me so busy and full.

On one of those nights out while sitting around a huge bond fire surrounded by some family but mostly strangers and a band playing in the background I suddenly felt like Rick was sitting right next to me on the bench. I felt so warm and full of love from him. It was like we were both enjoying the surroundings together like we used to. I felt so normal for those few precious minutes. I wanted to stay in that moment forever!

I have agreed to be filmed some more in the next while in regards to what is happening in my life and how I am doing now that my sweetheart Rick is gone. I agreed to do that in hopes that maybe someone in some small way would benefit by it. From a pure vanity perspective on my part... after looking at the last filming episodes...yikes...the stress of this past 2 1/2 years has definitely taken its toll!

I dread the coming winter and keep thinking thoughts of how I am going to move forward. Remember those days when you were about to finish high school and you had this big world out there and how were you now going to have to fit into it....everyone would ask...so what are you going to do now? well that is where I am at!

I am still busy reading and reading biographies and still trying to come to the realization of some sort that my Ricki is really gone and I have to learn how to live the rest of my life without him here in the body. I know in my heart that I need to trust God to open doors and lead me in this next part of the journey but my mind and emotions still want to be sad, cry and grieve. I also know by widows talking to me that this incredible missing of Rick will never end but that I will in time learn better how to adapt and live with this new me.

I keep reminding myself this is all so new....it is only 2 months and 12 days...not to be anxious about tomorrow....one step at a time....even though it is just a pinkie toe some days....but anything forward is going in the right direction. Some days I would rather pull the blankets over my head and just stay there. Those are the days I tell myself to just get up and get a cup of coffee...then when I do that...I tell myself to get dressed...then when I accomplish that I tell myself to go and get the mail....all the mean while my mind is saying okay I will but then I will go back to bed...but as I keep challenging myself to do just one more thing pretty soon I forget about crawling back to bed.

In saying all of this, please do know that I fully understand there are millions of other people in the world who are in way way more worse and even sadder situations than I. There are billions of people who have already gone before me on this journey of grieving and loss. So please be kind to me in trying to understand that I am just writing down what I am experiencing as I walk through the days, months after losing my husband.

The weekends are the hardest for me. I think that is because that was the time where Rick and I would always try and abandon boring daily routines and try and do other things together. Towards the end we couldn't just get away or do something really exotic like go out for supper together :) but we would still have a plan even if it meant to not answer our phone, no company and just stay in our pj's for the day and watch movies and snuggle. It was our little getaway!

Before Rick got sick he and I used to laugh how crazy we were. We would be up to our necks in doing some project or another and one of us would on the spur of the moment suggest...hey, why don't we head out to such and such a place... with out hesitation the other one of us would say "sure great idea lets go for it!" and within minutes we would have the tools put away and be packed up and gone!!! I have so many special crazy memories of Rick and I doing that!

Brings to mind some more of Rick's traits....F (fun) U (understanding) N (never boring)!

Joan here..."2 months 6 days"

2010-10-19T22:04:00.003-05:00

I woke up this morning with thoughts flooding back to the beautiful dream I had during the night still so real and vivid that I instantly wanted to go back to that dream.

In my dream Rick was dancing with me. We always loved dancing together and never worried about the accuracy of the steps. We were often the first on the dance floor and the last to leave. In my dream, Rick was so free and happy and really enjoying the dancing. We were having so much fun together. He put his arms around me and I felt like we were one as we had fit so perfectly together. I could feel the warmth and strength of his arms around me. He twirled me around and around.

It really meant so much to have that dream especially with me missing him so much. It brought on a flurry of memories of him dancing with me. He would spontaneously pick ordinary places and just start dancing with me. Some of my favorite places that he did that was on one of the busiest street corners in Toronto, the middle of St. Vital Shopping Centre on one of the busiest days around Christmas , at the Forks directly across from the Basilica. The first time that he did that I was caught off guard. I was so shocked that he would even consider doing that especially with crowds of people around us. He would waltz and twirl me and I always was so amazed and pleased that Rick was so fearless.

For every good day I have I usually have 3 not so good ones. There just is that pulling in the pit of my being and then I just have to go aside and cry and cry. I have been spending a lot of time with friends and family while being in the city. I even spent time on the golf course...not that I am golfer. Keeping busy helps to take my mind off of Rick.

As I type this I have his pic sitting on the table next to me and when I glance up I see his smiling face and sparkling eyes looking back at me. I stop and give him a kiss every now and then. I just miss him from the core of my being.

I can see where people advise widows not to make any big decisions or make big changes early on as there is so much confusion and numbness and lots of lack of concentration. My short term memory is exactly that... short.

Finding joy and vision for each day is definitely a challenge. Most days I would just find it easier to crawl under the blankets and stay there for the day. I just keep telling myself to get up...get moving...this part of the journey is only for a very short time in light of eternity.

This weekend the lift that was originally installed in our suite to raise Rick from the main level to the upper level is being removed. Once again, bitter sweet. I will have regular stairs to climb now no more climbing up and down the aluminum ladder that I had put on the lift. That way I didn't have to turn on the lift each time I scooted up and down myself. It was so noisy and took time to get to the upper level. It will be so different to just have normal stairs there. I am glad to see the lift go but so sad to see it go as it is another thing full of memories for me of taking Rick up and down. We had been so happy when Jake designed, made and installed the lift at the beginning as it meant Rick could go up with his wheelchair. This is one of the last pieces of equipment installed for Rick to be removed.

I know I will have a hard time when I go back and see it changed. It will trigger a whole bunch of emotions and memories you can be sure.

Our little 3 year old granddaughter spent part of the day with me on her birthday and of all things she asked me out of the blue for was a bird. There were a bunch of them in a container and she picked out a "humming bird". She just hung on to it all the way home. She had no way of knowing what that "humming bird" meant to me. Another memory!!!! Little things that we take for granted each day are monumental when they become memories of a loved one. So enjoy absolutely EVERY little thing!

Joan here..."Home Invasion...what next?"

2010-10-12T16:30:00.005-05:00

This past week has been very challenging and interesting all at the same time. Yesterday, I can really say that Thanksgiving was very hard. I was surrounded by wonderful family but missing Rick is unbelievable. The longing to talk to him, feel his arms around me, laughing together over stupid things....it never goes away.

One thing about having a terminal disease is that it gives absolutely EVERY one who wants to take the opportunity to talk to the person who is dying an opportunity to do so. They can never say they didn't have a chance for closure. We all knew Rick was dying. Just like for him...if he wanted to talk to anyone he had 2 1/2 years to do it. Most people don't have that chance especially if they are in an accident or have a sudden heart attack or something. Rick was so fortunate that way and he knew it. We talked many times about all of this.

I decided to take up an offer that was made to me to house sit. Well, what an experience!
I am in the south end of Wpg in a supposedly very nice safe area and.....
That night, I felt prompted not to sleep in the master bedroom but rather sleep in a lower level of a multi split home on the sofa. As it turned out that was the best thing I could have ever done!

As the evening progressed sleep would not come...which was a blessing....I got on the computer with the television going in the background. All of a sudden there were sounds coming from the upper level at the front door. It took me a few minutes to catch on...it was around 4:00 am in the morning and I realized that was someone trying to break in the front door!!!! At first I thought maybe I should just hide and see ...then I heard a voice say " call 911". Yeah Rick!!! That is exactly what I did...interesting how I felt like I didn't want to bother anybody....yikes!!!! Anyways, the operator kept me on the phone asking me if I was all alone....etc...etc...she was so great with me! I turned on the lower level light which would shine up through to the front door. I guess that shocked the intruder somewhat and off he went.

Three squad cars came out to block the streets. Long story short they chased a man dressed in black riding a bike minutes away from here on one of the pathways that join the bays. He eluded them and they even brought the canine in but too late...He was gone!

In between all of this, I was online with an Australian friend who was so afraid for me as I was in conversation with her as this was unfolding. Alaina had just lost her husband to ALS, and has two young children, and knew I was potentially in trouble. She hung in there until I was done with the police and knew that I was okay. We are talking Canada and Australia!!! Modern technology!!!

I was so amazed as this afternoon, the police victim crime's unit even phoned to see how I was doing...wow...kudoos to Winnipeg Police Department!!!!

Tomorrow, I am meeting an old special friend of Rick and mine for lunch. Rick and I have a lot of history with him and then I am back to my place for a couple of days. I was wondering how come I was feeling so sad today and then realized...it has been 5 days since I am home...wow...I made it 5 days!!! I have been invited by Rick's wonderful cousins to spend time with them at the lake. So this weekend I'm off there and then back to Winnipeg for a week.

It doesn't take away from the loneliness but I do have a real sense of Rick's being walking with me. I did have a thought though...if anything would have happened to me during the break in...hey..I would have just got to be with Rick sooner...so fear doesn't reign in me...love does!!!

I also got to talk to my friends by skype today all the way from Europe. How cool is that? I could see them and talk to them. Maybe Europe is in my future???? Rick and I always wanted to go to Greece and the Rock of Gibraltar. Never say never!!!!

Joan here..."Thanksgiving Day without Rick"

2010-10-11T01:19:00.006-05:00

Really if you think about it Thanksgiving Day should be every day....always being thankful.....that is easy to do when things are all going good...but it sure is another thing when they are not....that is where the rubber meets the road....when I thought about the upcoming Thanksgiving Day I wondered how I could even really be truly thankful this year. As I allowed myself to even think about it further this is what came to mind...

First of all this Thanksgiving I am so thankful that my husband Rick no longer has to lay there paralysed from his neck down and that his spirit is free to soar with the angels on high!

I am so thankful for the wonderful, loving and fun almost 14 years that Rick and I shared together.

I am thankful for all the wonderful memories I have of my dear husband Rick.

This is my first Thanksgiving without Rick and I have been remembering all the different times and things he enjoyed. He especially loved turkey and would always make this super duper dressing using a variety of fresh herbs from our garden. He would also add almonds to give it a bit of a crunch. We used to cook together all the time. We loved working side by side in the kitchen always inventing new dishes together.

I am Thankful for the time I got to spend at the cemetery today basking in the beautiful warm sunshine. I have lots of memories of Rick and I going there over the years and walking around and looking at all the people he knew who had passed and he would tell me all the stories about each one of them. The last time we were there it was so emotional as he could barely walk even with using (Max) the cane. It was one of the very last times he ever walked. I filmed him as he walked and talked. That footage is so precious to me now. When I was there today I was full of all those cherished memories.

I am thankful for all our children, grandchildren, family and friends near and far, the friends I have now all across the world, all the professionals of every kind who have so kindly been there for Rick and I these past years and for all the people who surrounded us in prayer when we were hanging on by a thread.

I am thankful for all the people who dared to open up their hearts and lives and blog so that when Rick and I started on this journey we could read them and be encouraged or informed. It helped us so much at the time. We spent hours desperately searching to find people we could identify with who were going through or had gone through this walk. That is why I have chosen to continue to blog even after Rick's passing. If in any small way someone who has lost a spouse or is going to lose a spouse to a terminal disease can find some comfort or insight in reading this blog it has been worth it all!

I am thankful for my health. After going through the last 2 1/2 years taking care of Rick it has given me first hand experience at seeing how precious our health really is. We should not take it for granted. I am still amazed that in those years both Rick and I never got sick! Not even a cold!

I am thankful that Rick and I withstood the hurricane winds of daily challenges pounding against us through the disease of ALS. We did not allow this disease to destroy our faith in God or our love for each other. Rick and I were a team and we faced everything together. We both learned to walk each day trusting that God's grace would be sufficient for the day. If we would try and go beyond a day in our thinking we would just become overwhelmed by it all. It is the same grace that keeps me now...God's grace is sufficient for me and I keep bringing my thoughts back to that one hour at a time...one day at a time....

I am so thankful I have had -
...an earthly father who loved, accepted and forgave me totally.
...an earthly husband who loved, accepted and forgave me totally!!!
I am so thankful that we ALL HAVE an Heavenly father who LOVES, ACCEPTS and FORGIVES us totally!!!

Wow!!! For all that and much much more I am so thankful for on this Thanksgiving Day!

Have a great Thanksgiving Day!

Joan here..."53 days"

2010-10-05T20:47:00.006-05:00

Today, I spent some time with Barb who just lost her husband to cancer a year ago. Her and I go back years and years ago. We walked and talked. We both have our hurt, pain and memories!

I am off to Wpg Thursday(over 1 hour away) for three weeks to house sit! Wow!!! I am not sure I will last that long...probably I will be back and forth...I usually can't go more than 2 days away from here at a time!

It will be a good test for me if I really want to live in the big city! I keep wavering from staying out here to moving to the big city! I feel safe here....I think when you lose your husband you really want a place that you feel safe at. The people are so incredibly supportive and wonderful out here... it is just the fact that there isn't a whole lot of things to do out here.

I have resided myself to the fact that no matter what... I am staying out here over the winter for sure. Then.....????? I am still in that identity crisis mode....

I read years ago about a women who lost her husband to ALS and she moved out west and spent a season on the tourist road until she was ready to come back. It never left me....she could lose herself in a crowd.....and when she was ready she came back and started to focus.....I can honestly say I can't focus more than a moment at a time.

I sometimes think that....if only I didn't love Rick so very much...it would be so much easier. I could just skip a beat and move on......but that is not the case for me.....we were inseparable! I have my times when I really feel he is speaking to me....he uses nature!!! Dah........he loved nature.....

I have been reminiscing about many things.....all the words...all the things he spoke of.....they have all been coming back to me.......and as far as everything I have read that is what happens.

In everything about Rick and his life I have learned to TRUST. He had many opinions and thoughts but he didn't tell others...he just smiled...but he did talk to me! I got to know the Rickster as many of his close friends called him!!! He did not like to "rock the boat".

Rick was always one of those guys who found it easier to just smile! and that is exactly what he did...smile!!!!

In all the years we were together absolutely every photo that was taken he is smiling from ear to ear....when I brought that to his attention...he said " Joan, I am so happy!"

I know he is happy right now...smiling down on us all and wishing all of us well!!!! His words to me were always..."Don't worry Joan...everything is going to be all right!...Don't worry!!!" Bob Marley.

Joan here...."Today is 52 days"

2010-10-04T13:24:00.006-05:00

How am I feeling today? Very sad, lonely, no direction, no focus and lost! I know it will pass... it is just how I am feeling right now. I will try and end this blog entry on a positive now that I got all the negative crap out! It is a beautiful sunny fall day which I can be soooo grateful for though.

On the weekend I attended a family reunion on my mom's side with a couple of hundred people present. They raised over $2,000.00 in a silent auction for my brave cousin who has been fighting cancer for a number of years now. When Rick was first diagnosed they rallied around us also so it brought back more memories. At the time it was so humbling to receive but so wonderful to be surrounded with such love.

At the reunion it was so wonderful to experience all their love, support and compassion but so incredibly emotionally stressful at the same time. I felt so lost and alone even though there were so many people around me. I still can only be in crowds for awhile then I just have to go. Usually, when I feel that tugging inside and energy dip it is time for me to get alone and just cry! Then I am good for awhile again.

As I was driving home in the early evening right when the sun was still shining bright I noticed a farmer harvesting in the field to the side of me. (not the pic on the blog) It was an incredible beautiful sight - a picture perfect taking shot. Blue sky, bright sun, golden fields as far as the eye could see and the hum of the combine. A flood of memories rolled in once again of how Rick and I would drive each fall down country roads and see if we could catch a glimpse of exactly that. Rick grew up on a grain farm and did many years of harvesting. It ran deep in his soul even though he was living in the city for years. So between gushes of tears and flashbacks I managed to make it home safely.

I have been reading books and books on grieving and widowhood. Rick's uncle Keith has been so amazing with his letters, emails, phone calls and mailing me books and books to read. He is currently on his first trip back to Vienna since he lost his soul mate Christine just over a year ago.

Some of the book titles that I have been reading are:

Healing after Loss (Daily Meditations for Working Through Grief)by Martha WhitmoreHickman

Healing a Spouse's Grieving Heart (100 practical ideas after your husband/wife dies) Alan D. Wolfelt, PH.D.

Getting to the Other Side of Grief (Overcoming the Loss of a Spouse) by Susan J. Zonnebelt-Smeenge, R.N., Robert De Vries, Ph.D.

The Grief Recovery Handbook (Moving beyond Dearth) by John W James & Russell Friedman

A Time to Grieve (Mediations for healing after the death of a loved one) by Carol Staudacher

I found a website that has some links to other sites just click on the resource tab on this site and you will see a list http://www.griefcase.net/ . Linda Della Donna is the author of many articles, books and radio on widows and grieving. I haven't checked these other sites yet but I am sure any reading will offer something.

There are a couple of realities that keep popping up...I now belong to the "W" (Widow) club, one of which you have no choice as you automatically get a membership to it, the other is "HINCB" (he is not coming back).

I keep meeting widows where ever I go and believe me there are lots of us out there. According to stats the average age of any widow is in their 50's. Scary thought isn't it. I started thinking about that and sure enough the majority of widows become one in that time frame. They all have tears in their eyes when they talk about the memory of their beloved one. To them it is still like it just happened yesterday even if years have passed for each of them. True love is eternal!

Some of the widows try and soften the blow and tell me that "it will get somewhat easier as times goes by", and others say "I am sorry but you will always hurt from losing your husband, it never goes away, it is always there!"

I am beginning to come to accept the fact that there will NEVER be a day for the rest of my life that I won't think, long for or miss Rick from deep within my soul. I am in an identity crisis right now and I will have to learn how to live life as the new "me" whoever and whatever that will be.

So I figure with the help of Jesus and Rick I have a good chance at getting to the other side of mourning and grieving and discovering what God has for me for the remainder of my life! I am looking forward to the day when I will no longer feel dead but alive in some way again. Beauty for ashes and the oil of joy for mourning!

It is amazing to me how the little things that people do inspire hope in us when we are feeling down. Today, when I went to pay for my insurance the lady out of the blue told me about the exercise classes that they hold twice a week at the school. I have so wanted to start to slowly get involved in something to give me some focus and when I least expected it there it was!

Then once again I received some donation slips from the ALS Society from people who have donated in memory of Rick. I also received a couple of special letters. One in particular was from a grade 5 student who was so deeply affected by the presentation that Rick gave last year.

So here is to "choosing" to look upwards even when we just don't "feel" like it!

Joan here...."Today is Day 47"

2010-09-28T22:56:00.007-05:00

Well....Nick aka Elvis...ended the evening with getting a standing ovation! Need I say more!!!!

The evening was bittersweet as I knew it would be. Coming up to the event I have been going into such a slump. It is amazing to me how my intellect may reason things out but my emotions sure don't. Just when I think I have everything under control then bang out come the waves of emotions seemingly out of no where!

This week.....

My sister Kathy helped me take down the outdoor stuff for winter and then went through the food pantry, cupboards and fridge sorting through a lot of expired items and etc.

Well who would have thought that a jar of pickeled eggs would have brought on a flood of emotions and a stress fest! Rick loved pickeled eggs and I had bought them for him so he could enjoy what ever he could while he could. Just throwing out that jar threw me into such an emotional spin. It was not throwing out the jar of pickeled eggs...it was throwing out the memory attached to it...it was like parting with a part of Rick...it was unbelievable!!! Each time I have parted with anything remotely to do with Rick it is an emotional crisis for me.

I have discovered that when I leave our place more than a day I want to come back. It is like I am homesick and I long to be what I think will be nearer to Rick. Then I come back and after awhile I have a good cry because he is not here and then I sit here in the room and wonder what am I doing.

The other day while driving home I had this sudden feeling of loneliness sweep over me. I started crying and crying and then it was like Rick was sitting in the passenger seat next to me and I could hear him telling me that I am not alone and that he will be here forever in my heart, in my memories and in the spirit where ever I go.

I had another real moment a few weeks ago ....when I was hugging Rick's urn filled with his bodily remains in my arms ...I thought about all the years of his hard work...the years that he would not even take more than a week holidays at one time....and how anything material in nature that he possessed would not be going with him....he could not even take his ashes or the urn with him....

I decided right then and there that all material possessions are just that "material" and it would only be the memories, the experiences, the love in our hearts that we could take with us...nothing else....I have heard this said many many times before but this time it is like my heart wrapped itself around it. I just wonder if I can be strong enough as a person to not give in to acquiring more"stuff" down the road and embrace only the intangibles.

What I am experiencing is probably so normal in regards to evaluating what is most important in life. It definately is not things that is for sure. I look around and I don't want to have the responsibilty and pressure of taking care of things. It is too stressful. Simple, simple, simple is what I am really looking at down the road.

Day 47....My heart aches for him all the time. I am just learning how to live with it one tear and one day at a time.

Thanks for your continued prayers, love and support.

Joan here..."My darling Rick is laid to rest!"

2010-09-20T16:38:00.006-05:00

On Saturday, on a beautiful sunny fall day we buried my wonderful, darling & loving & kind & forgiving (but not perfect just in case you have ought against him) husband along with his mom and dad.

Rick was always so thankful and grateful for his devoted, loving and supportive mom and dad. Remember, they are in their 80's. They tube fed, hoyered, toileted and bipaped him. They were with me for the whole ALS journey. They saw the intensive care and the incredible suffering that their son went through. They saw how truly brave he was. Anyone dealing with a terminal disease understands this is NOT a simple thing. The physical side of it is one thing...but wow...the emotional side is another! Their love and devotion to their eldest son is above and beyond! They are amazing folks! I stand in awe of them!!!!

I went over to Rick's folks house for the night on Friday as we would be burying Rick in the morning. I spent the evening reminicing about Rick and I and them and how he was in the last months and days.

Late in the evening they told me they had a "surprise" for me. Just think what that meant to me...a surprise! Who would even think about me at this point? I couldn't even begin to think of what that meant! Well, they had booked the hospitalitly bedroom for me in their complex. They told me they wanted me to be able to have a bath and sleep comfortably. Wow. A bath....they got it....our place only has a shower and in the years we have lived here I have so missed just soaking in a bathtub. They remembered!!! That meant so much to me...they thought about me as a person! I know why Rick loved and adored them so much! He had such confidence and trust in them! I know he would have been so proud of them for doing that for me, his wife.

Just think.....you are a father and a mother...and you are going to bury your son...your firstborn....Wendal has been burying people for years as he volunteers at the cemetary. I can't even imagine preparing the spot knowing you were going to be burying your first born. I just cry at the thought of that for them. Wendal went the day before and took care of all the details of that with a friend. Rick's mom went to the florist with me and purchased three roses so we could place them in Rick's plot.

I wont' give the details but believe me...we placed Rick's ashes to rest...Rick style!!!! Amidst my tears and words Rick's mom piped up and said "And God give him a voice so he can finally sing!"...I hope I quoted that somewhat accurately. Well, we all burst into laughter...Rick could not carry a tune ever....it might have been because he was quite deaf...but nevertheless...he could not sing!

I don't wish this for anyone...not even my worst enemy! Love is painful! I have been reading all kinds of books on grieving, widows and etc. They all tell you not to do anything until you are ready no matter what people say or pressure you to do. I really understand that NOW, who knows when I will take off my rings, who knows when I will be ready to change my name from Rick and Joan to just Joan, who knows when........when your love is great....the pain is great!

Joan here...."Another first"

2010-09-16T09:37:00.005-05:00

It is that time of the year once again....Rick and I used to always attend "Elvis (aka Nick Drobot) on the Red". This year it is being held on land at the Delta Hotel Winnipeg. I am planning on attending in memory of Rick and hope you can make it also.

The event holds so many special memories. Once again this will be so bittersweet. Last year Rick (in his wheelchair) and I both danced to "I'll remember you" one of the songs Nick sang at Rick's funeral. By the month of July, the ALS Society of MB knew that Rick would have been too ill to attend this year but they were planning on having the film crew come out and interview Rick and then present it to all of us on the Elvis night. Rick was so honored that they were going to do that. Sadly, Rick passed away before all that could be put in place.

Elvis has planned one incredible awesome show this year!!!! Try and make it if you can. Thank you for helping to raise funds to help with finding a cure ....so no other family will ever ever ever have to go through this!

ELVIS, one night with you

Featuring...Nick Drobot as Elvis

Experiencing Memphis without Leaving Winnipeg,

Friday, September 24th

8:00 pm - 1:00 am

Delta Winnipeg

Two sets of performances by Elvis, aka Nick

DJ-Aime's Music Services Music from the 50's & 60's

Elvis themed snacks

Silent Auctions

Tickets $50.00 each (includes the food, $25.00 tax deductible receipt)

For information on tickets Sharon 831-1510, Brian 837-1270

email: hope@alsmb.ca

Joan here..."It is 4 weeks today"

2010-09-10T13:19:00.003-05:00

I woke up to loud pounding rain outside, wind and gray and gloomy looking out. As I listened to the rain pounding away outside I turned my thoughts to today...it is officially 4 weeks since I last talked and kissed my beloved Rick in person. All kinds of thoughts and memories came flooding in as I just laid there in bed not wanting to ever get up.

It took me awhile but I decided to get up, take a shower, get dressed and despite the weather I am still going to go away for the weekend as planned. Better sitting and talking with someone (a very comical and caring cousin I might add) than being all alone.

Yesterday, was an extremely difficult day again. Full of raw emotion. I went and picked up Rick from the funeral home and placed the urn in the front seat with me and of course sobbed all the way home. I remembered the time when Rick and I sat with the funeral director and discussed Rick's funeral and sent the director away with Rick's urn. Now here I am only a few short months later with the urn next to me full of Rick's remains. When we first got the urn from dear friends of Uncle Keith who made it Rick said he just couldn't wrap his mind around the fact that his ashes would be contained in it soon. Everything just seems so unreal!

I carried the urn in and closed the doors. I then just hugged and hugged it and of course cried and cried. I know Rick is no longer here but it is still his remains. I sat down and wrote a letter to him that I am going to include in that urn to be buried at a later time. It helped just writing down all those thoughts and expressing all those feelings bottled up inside.

So instead of just talking into the air to him....I talk to his urn. Sounds rather weird but seems so natural at the same time.

I have been out to see Rick's mom and dad a couple of times now and have really appreciated the time we spend together. We share memories of him in his last days with us and it helps as they understand the situation he was in with his need for special care and what it took this last 2 1/2 years. They understand without me having to try and explain things first. They have brought me much comfort as they truly loved him also.

I took this picture this morning in the rain of the little piece of the world that Rick could look at and enjoy just sitting on the deck. He was uncomfortable going for walks because of all the bumps so he didn't go beyond the deck for quite some time.

I am still receiving cards, emails and letters. I look forward to that little trip to the mail each day. Thank you all so much for your love and support. You will never know how much it means to a person till you are found in this situation that is for sure!

Joan here..." 3 weeks and 3 days"

2010-09-06T19:05:00.002-05:00

Well Ricki,
It is 3 weeks and three days…our first long weekend without each other…our first anniversary without each other. I went for a walk today outside of town on the road you and I used to go on with your wheelchair before it got too hard for you. No one was around so I could talk and cry and cry. God I miss you! My life will never be the same without you…never…..we were suppose to be together here on earth till we were so old. You were going to paint my toe nails and I was going to give you your traditional Sunday shave. I know some day we will be together again but it will not be this way, the way we were here on earth, so I grieve that continually.

I just don’t know what I will do or where I will go. I just want to be with you. I don’t care if I live or die right now I just want us to be together again. This is just so painful and horrible. I miss you talking to me…calling me “babette” and "sweetheart". God I hope you are safe and okay. I am trusting that God is taking good care of you. I still worry about you….unreal aye! You are the love of my life now and forever!

Last night I had a dream about your sister and her husband. They were talking to me. Then I woke up from that dream to your voice calling “Babette, Babette” from downstairs. It was 6:00 am. I woke up and focused and realized that could not be you so I just layed in bed for hours thinking of you. I miss you so much….I once told you that when you will die and be in heaven you will hear this voice from way down here on earth screaming and crying and it would be me…..well Ricki it is me!!!!!! I never dreamt it would be so painful…even when you were alive and we talked about you leaving I couldn’t bear to even think of it then…well it is even worse than I could have even ever imagined…there is nothing that could or would prepare me for the pain and anguish that I feel right now in my soul!!!!

Initially, I was so numb and in shock with my emotions in limbo and now as the weeks are passing by the numbness is waning and the emotion is just so raw and is coming to the surface. I sure can say this…..I sure must love you because the pain has been unbearable. I can see where fear leaves as I have nothing to fear…….if I die…..then I am with you so that is a good thing…..the power of fear has been broken. Death no longer has its grip. You have gone on ahead.

You are the most bravest person I have ever known. You walked a walk of suffering and humility that was unimaginable. I treasure your words you spoke to me so many many times “Joan I just want us to be together”.Well, that is exactly what I only want “Rick, I just want us to be together”. You were an incredibly wonderful husband…as I told you…NOT perfect but wonderful! I remember how you laughed when I told you that the day before you died. We had so much fun together, so many laughs, so many tears, so much love…You always said “you and I plus nothing babe” .

Well my dearest husband, I wrote this after a really difficult day and weekend. I have cried and cried, went for walks, read books, watched tv and had a few cold ones. I made plans today to go to the symphony which I have never done before. There will be a variety of music being played over this next year. You loved variety of music. It is every Sunday afternoon, once a month. So it should be tolerable! Lol…….. Then I want to look for a bereavement group to go to. I need to talk and share with others……I am finding myself too shut in. I am going to a lake and fishing next weekend with cousin Bruce. I really need you Ricki, I need to talk and sit with you. If I could just have another day with you…..I guess in reality that would never be enough would it? Why does death have to happen to those who you so love and want to be with?
Love you Ricki Gale……….I am writing this after much tears and sobbing!

Joan here..."Three weeks today that Rick passed away"

2010-09-03T10:50:00.000-05:00

Rick always loved gardening. Here he is surveying the land.

Just think Rick is in another realm for three weeks now. No pain, no suffering and probably still running and jumping and waving his arms like crazy because they work now and busy visiting all the loved ones who have passed on!!!

You are probably wondering what I could possibly be doing and feeling three weeks after my husband has passed away. Well, I am still living and breathing...choosing to put one foot in front of the other.....life is going on. I am digging deep within myself and my faith. There isn't a time where every few minutes that I am not thinking of my Rick. I don't always show where I am at visibly but I am devastated!

This morning I went to the post office and rec'd a card from Dr. Kati & Nancy. He was our doctor years ago when we first lived in Wpg. What they wrote really warmed my heart especially this morning...."How sad we are to hear of Rick's passing but having had patients with ALS he is in a way better place. You two were a wonderful couple, worked together, lived together and we never saw one without the other. ....".

I have been so busy with getting all the equipment back to it's owners and doing paperwork. The equipment is all sent back. Talk about an empty space around me. I have moved back some furniture that we had in place when Rick and I first moved here...before the hospital bed, before the hoyer lift, before the IV pole, before the wheelchair, before the brodi chair. So right now, this suite is so very different...it has this really cold feeling and I guess that will always be. It is just not "our" warm and cozy space anymore. Rick is not here and every time I go out and come back in I am reminded of it.

Yesterday, was a day that all the flowers needed to be discarded. Hmmmm....thought the equipment was hard to deal with but here the flowers were yet just another thing to go. I reread all the cards on the flowers and carefully salvaged any flowers that could be put together in another vase. I ended up with a vase with misc flowers from all the other bouquets.

Yesterday, I decided to meet my friend Dona (with only one n) for lunch. As I was walking there I just kept crying out in my heart to God and Rick and saying how much I was feeling so lonely. I needed him...I wanted to talk to him....I wanted to feel his warmth and love. Well, wouldn't you know it...a block later a van pulled over next to me and a lady started talking to me about how much they have been thinking of me and my journey. She mentioned how she wanted me to meet her sister who herself had lost her husband years ago.

Then about another block later a lady came out of the post office. Patsy, she writes for the Carillon News for Elma. She mentioned how she had written an article about Rick. She will be mailing me a copy of it. Then I had lunch with my friend and low and behold who did I meet up with is our own infamous Dr. Spence....wow! I believe between Rick and God, I was supernaturally taken care of!

And to top it all....when I went to the post office there was a fist full of cards from the ALS Society of MB who had received donations in memorial to Rick!!!! Talk about heart wrenching. I scrambled to get home as fast as I could to read who would be so considerate in taking the time to do this.

As I read each name...I thanked God for these people...who are all trying to make sure another family will not have to go through this down the road. I phoned Rick's mom and dad and went over the names with them. They shared the cards they have rec'd also in Rick's memory. It brought such comfort to all of us. People cared...people cared about Rick...about us...about not having other families ever having to deal with this.

Rick loved his parents so very much and it is an honor for me to be able to even talk to them and share the latest. They understand the pain that this disease inflicted on him and us. They were there with us for the whole walk! They didn't just talk it they walked it. They ran for the urinal bottle...they hooked up the feeding tubes...they heard when he gave us his last wishes....they were here for their son.

I still haven't decided when I am going to bury his ashes.... I have so many things to think about in that regard. Emotionally, I just know I have to keep it very simple just to get through it. Many times a day I thank God for taking good care of Rick right now and I know he is in God's hands. I just miss him so much!!!! His smile, his morning kisses...at the end he couldn't reach over and kiss me so he would always say to me....Joan I want to kiss you...I need a kiss...that meant I had to go over to him and kiss him. Towards the end his bipap mask was always in the way but we still managed....if I could just kiss him one more time.

If...if...if....kiss your loved ones while you have them....

Joan here..."Tough Day"

2010-08-30T00:31:00.000-05:00

Well...what can I say....
Lots of things happening...
My first wedding anniversary without Rick came and went over the weekend without my sweetheart...I kept telling him he better not die on our anniversary. You know Rick he always wanted to please. He didn't. He kept asking all of us when he was on his last days....What day is it?

I spent the entire anniversary day in (Rick's) bed in my pj's. I just reflected on us. I tried to sleep the day away. I rec'd a beautiful arrangement from my sister Kathy and Roger. It meant so much to me that someone remembered our day!

Rick's equipment within the next two days will be absolutely gone from our suite....Both our son in laws...Grant and Roger have offered to help pick it up and bring it back. It was wonderful of them to offer...but where I am at right now...I am over sensitive about everything.

My sister Kathy and myself loaded a van full of equipment 9:30 am this am and started returning things. It poured and it poured! Kind of like an omen...not that Rick would miss this stuff but rather it was like the memories tied to this equipment was being removed from my life! As each piece was loaded I was falling apart inside. I thought I was safe till Friday when I thought the truck was coming for the last of the equipment....which the one piece of equipment I clung to so dearly...his bed. I found this am that I needed to return the KCI mattress so that meant I could no longer sleep on the bed tonight. Well, I went into emotional overload....ended up taking wrong turns on the road and on and on it went today.

I delivered equipment and supplies back to the Pinawa Hospital, ALS Society, HSC Rehab, Respirolist Dept. of the HSC. It was like a trip down memory lane meeting all these people, Cheryl, Susan, Diana, Sharon, Brian, Ed, Mic and Karen who where so incredibly wonderful and helpful to Rick in the past couple of years. I drove the good old "beast" downtown Wpg. with all the courage I could muster up.

My sister Kathy and I just dug in and made it happen. We lifted, pulled and pushed.
We have had the most miserable day imaginable with rain and rain and rain pouring down.

Friends of Rick and I...Brian and Jan made sure I made it home okay with the "Beast". They actually drove from Wpg to Whitemouth and the back again in the torrential rains.

Our suite is almost visibly devoid of anything about Rick. The equipment is gone. I keep reminding myself that the equipment was NOT Rick...just the memories. The room echos with emptiness...I have the large pic of Rick hanging in the suite and a few pics of him and I on the desk.....our favorite wall hangings.... but there isn't a lot visibly left of him......It is almost unbearable at times! When will this nightmare ever stop????

Joan here..."Two weeks today"

2010-08-27T09:14:00.007-05:00

It is two weeks to the day since my beloved Ricki has passed. It seems like a lifetime ago on one hand and only minutes on the other. So much has happened since he is gone and I desperately would love to share our morning kiss and sit down and have our morning coffee together. I can't do that so I blow him a kiss in our special meeting place and then sit down and have my coffee and talk anyways.

Within 4 months, Ken, Brian & Rick have all passed away from ALS. Bet they are not sitting in wheelchairs right now!!!!

Ironic, that today this Friday, two weeks to the day that Rick passed, that the transport truck came to pick up Rick's wheelchair. Thank you to SMD (Society For Manitobans with Disabilities) for the basic power chair, The ALS Society of MB for the specialty back and sides, custom tray, Health Science Engineering Dept. for their engineering expertise in the sip & puff, tray for the bipap, switches for the headrest. You all made Rick's life so much more comfortable and gave him a set of legs for the past year! Thank you!!!!!

This is the first major piece of equipment that has left the suite. My heart wrenched with pain as I drove it out and onto the platform of the semi. I had to show the driver how to operate the chair and it just crushed my soul as I began remembering how Rick taught me how to drive the chair and turn it off and on and all the little tricks I needed to know because of the switch on the head rest. The memories all came flooding back. How I just about smashed his foot because I forgot to turn the speed down at first. Rick so patiently taught me. Looking at it at this moment he probably thought he better teach me right otherwise he was in for the ride of his life and would lose a foot somewhere down the road!

The fellow from the transfer shared how he knew of a young man who within this past year passed away from ALS also. Every time, I mention ALS someone has a story of someone they knew who had it or has it. According to the stats that should be impossible. There are far more people out there than one knows.

When the door of the semi closed and the semi started driving away. Once again, I stood on the driveway waving goodbye and crying as another part of our tangible life with all its memories....was leaving.

Thank you to all who continue to send in support to the ALS Society. I am amazed at the memorial donations coming in. With each donation I receive a card acknowledging the person who donated. It brings such joy to my heart that with this money someday a family will not have to go through what we have! Thank you!!!!

Joan here..."Day No. 13"

2010-08-26T08:24:00.003-05:00

It has been many days since I have actually been alone in our suite. The very first time that I was alone, which was a couple of days ago, all the flood gates opened up and I just continually started talking and crying to my Ricki. It's like I am praying to God one minute and then to Rick the other. Then I think..."Well Rick is with God right now"....so I don't get too hard on myself on the dynamics of that.

I have started the sorting of the equipment with our occupational therapist Louise as of yesterday. She has been an absolute wonder in helping us correctly fit Rick to his equipment, ordering the right equipment and helping us in every other way imaginable. It is so bittersweet.

I am not crying as much but I do have times when I think about Rick and everything gets stirred up. When working with any of his equipment after awhile all of a sudden I feel an absolute energy drain. I get exhausted and have to stop. I think it is the emotion of grief or sorrow that is wanting my attention. So I stop and just rest for a bit and allow myself to think about the memories attached to that equipment.

Yesterday, Louise had to strip the power wheel chair as 4 different organizations had parts on it. As she stripped the parts all the memories came flooding in. The memory of the first day they unloaded the big, black, heavy, cold chair off the semi in Dec. 2008. I was horrified when I first saw it as Rick had just been in the manual wheel chair where he could push himself around and now this big black ugly monster was in front of us! It meant our new reality would be that he would for sure now never ever walk again. I was so angry at the time that I gave that chair an extra kick as was my ritual to each piece of new equipment when it arrived.

Low and behold...within a week or so after getting the chair...Rick was sitting in the chair and appreciating the fact he had power control and not having to expend energy to push himself. It was so much easier for him once he started using it...it was so fancy..it had a head rest, it could tilt and spin around and go fast! Before long we both embraced the freedom that it gave him. From that time on the memories we shared while he sat or napped in that chair became good ones. So I can't even imagine how I will feel when they pick it up on Friday. That chair was like a big huge favorite lounger that most of us have in our living rooms and hard to let go because of all the warm fuzzy comfort memories attached to it.

I still have emails, condolences, and cards coming in. I look forward to reading them each day as I have my ritual morning coffee. It is so hard to believe that my Rick is not here to share the events of the past days and plan our days together. I tell myself he is having coffee with me in the spirit.

When driving down the long barren road from Wpg to Elma yesterday I noticed how the trees solidly lined both the sides of the never ending highway that lay before me. You couldn't see anything but trees when you looked to the left or right. All you could see is the long winding road with no visible end in sight. That is my life right now. I have family and friends on either side of me and I am on this new road and I don't have any idea what lies ahead for me but I am on it and moving ahead. Not moving fast... but slowly moving in my being!

Joan here..."Day No. 9"

2010-08-22T08:16:00.005-05:00

It is the ninth day today since my Ricki has passed. Nine days full of blur and numbness and tears beyond what anyone could imagine.

I started this morning by waking up and looking out the big window to see a big bright beautiful morning sky filled with newness and then with so much sadness as I miss my Ricki so very much. I have not taken down his hospital bed yet so every night I have found comfort in just sleeping where he slept. Covering myself with his blanket. Laying my head on his special boomerang pillow. Smelling his scent.

As I lay feeling the circulating mattress moving under me I lay there in one spot trying to imagine how Rick must of felt laying there in one spot for hours at a time not moving anything but his head unless one of us did it for him. All he could move was his head from side to side. He could no longer even move it forward or backward. I just start crying as I relive that image in my mind. I picture him being hoyered, rolled over,washed, being dressed, teeth being brushed, sipping on the little bit of liquid that he would even drink and a thousand other images and memories that are being played over and over again in my mind.

How helpless he had become at the end of this disease.Then I think about how I could have and should have done even more for him while he was alive. Thoughts of I should have hugged him more... should have...chould have...and the list goes on and on. I am sure that this is all the standard torment that comes to a person after losing your loved one.

Rick's uncle Keith flew down here on the day of Rick's viewing and stayed with me until yesterday morning. Rick had phoned him a day before he passed asking him to be the master of ceremony and read his Eulogy. Uncle Keith was my constant in the fiercest storm of my life. He steadily and carefully each day attacked all the demanding decisions that come with the planning of a funeral. We laboured over each detail. During the time he was here I got to pour out my grief, frustrations, and anger and ask him many questions about "are these feelings normal?" out to him daily. I mean pour not just sprinkle!!!

He himself lost his wife to ALS. Aunt Christine was our aunt by marriage so the disease was not a inherited one. Just the odds that he married someone who would develop ALS. She passed just over a year ago so Uncle Keith knew the walk only to well. He is still dealing with his own grief of losing the love of his life. Rick's wisdom of choosing Uncle Keith was, as I experienced this past week , more than for someone to take care of being his master of ceremonies etc. Rick in his wisdom knew that Uncle Keith would provide me with a much needed daily comfort of strong shoulders, soft spoken gentleman, and most important at the time he is experientially wise.

It would take pages and pages to really write down and articulate all the feelings and thoughts that I have been going through up to now. I think God has placed in our bodies a special way of building some type hormone or inner chemical release to help with such a time as this. I have felt quiet gentle tears rolling down my cheeks, I have felt groans of anguish and sobs gush up from my inner most being as I would release the sorrow and pain of the moment. Then I also have felt where a numbness would take over as if my emotions were dead and I would draw back from what was happening and go deep inside of myself. Sometime I can be around lots of people and then the next minute I have to go by myself to get centered again. I could never have imagined these kinds of feelings. They just come in waves and in no particular time or order. I try to let them just happen and let myself follow where they are leading me right now.

No matter who is around me when I sense I need to be alone I just go and take a few minutes to be alone with my thoughts. I usually pick the tangible spot to go to where Rick said he would be in spirit for me. I have found so much comfort in knowing that he picked the first spot right here in our back yard. He gave me another one when the time comes when I will no longer live here.

Right now, it is like God's very own creations are a very special gift to me and are working together to bring comfort and healing... the winds, the birds especially the hummingbirds (Rick's favorite), the sun rays, the gentle breeze will suddenly appear out of no where and surround me at that moment of desperation that I cry out to God to be with Rick. I miss him so much!

A woman will understand the pain when I refer to the "pulling down or bearing down from deep within" one feels when going into birth labour. That is how one of the pains feel when the wave of mourning comes over me and I have to go alone to release it. I am giving birth to a new life and reality of not having my Ricki at my side as I once knew it.

Yes, I know my Ricki will live in my heart forever and yes I will some day be with my Ricki in a very new way but right now that doesn't always bring me comfort. There is such a letting go of how our life was together here on earth, the dreams, our future of getting older together, sharing those morning coffees together and a million other things.

From the moment Ricki passed away until this very day I have been surrounded by loving caring family and friends. My sisters have been taking turns being here with me. Right now my sister from Abbottsford is here helping me. Because of all the people coming in and out before and after Rick's viewing and funeral there has been so much clean up and organizing. So many people brought us food and beautiful flowers. I can't focus longer than a couple of minutes at a time to really get anything done.

I will try and muster up the courage to write about my husband's viewing and funeral as time goes by. Right now I am living my day minute by minute never knowing if the next thought will bring me just a tiny ripple or a big wave of emotion to flood over me. Everyone asks how are you doing? I am not sure how to answer that. The one thing that has kept me from being swept into sea is my belief in the Love of God and everlasting life and I WILL be with Ricki once again...Together Forever!

Joan here..."A time of Rejoicing for Rickie...Mourning for me"

2010-08-15T07:45:00.005-05:00

As all of you know, Rick is the love of my life....as Katie put it "The other half of my heart!".
It hurts really really bad and I feel like I will never be myself again. I miss him so badly. Words can't describe the pain in my heart right now. I could fall down to the ground with the pain and anguish of my heart in crying out for him!

These past few days are days of shock, tears, disbelief of what has happened and the mad rush to get so much done. My mind is having to focus on getting through the funeral now and I only have minutes at a time to focus on my pain and loss. I am afraid when next week is over I will enter another faze of even greater mourning as I will have so much more time. We have been so blessed with all the flowers, food, cards, emails and especially all the hugs by people showing us their love and sharing their loss also.

On our way out the door last night to the funeral home we were greeted by Kirstine of the Whitemouth Hotel giving us some fresh hot pizzas for supper! Not only were the pizzas hot to our bellies but they brought the warmth of their love to our hearts. We have been blessed with family and friends organizing and bringing over food and beverages so as people have been coming over here I don't have to worry about any concern for these things.

I know Rick is over his pain and suffering...no more having to be handled by everyone...having to ask for even the smallest thing because he could no longer do anything but speak. This was one of his first concerns after diagnosis that he would continue to have the gift of speech. God surely heard his prayer and made a way for him to communicate with us until the very last hours where the meds, no muscles to breath in and out air, shear exhaustion made it almost impossible for us to hear his soft voice speaking. Our Rick with our children, his mom and dad and brother Garth surrounded him as he slipped peacefully into eternity. We are all relieved that he is over his pain and suffering and is now running, walking and eating with the angels on high. For this we are so very happy for him and Rejoice for Rick!

For myself and for all those who loved and cherished Rick it is a different story.... we mourn his passing. I will have to learn how to walk in the strength, power and trust in the Lord to heal my mourning and broken heart. Right now everything is so raw inside. I have cried and cried and just when I think there is no possible way that there is even a drop of water left in my body something or someone says or does something or a memory floods in or I see something of Rick's and the tears come again like waterfalls.

No one can ever be prepared for loosing their loved one, their soul mate. I had lots of time to think of losing Rick in the last 2 1/2 years but could never really allow my self to go there in my mind more than a few seconds. I can no longer run from it it is right here in my face every second that has gone by...he no longer lives in a physical body...where I can touch, speak and hold him...he lives in the spirit now and I feel him all around me even though I can't see him....I can hear his voice talking to me at times when I get overcome with grief.

His pet name that he used for me when it was just him and me was "babette". He told me not to worry when he realized he had but just hours to live. He did not have a chance to finish so much of what we talked about dealing with. He really believed he still had a few more weeks.
When the reality that he was going in a matter hours he started talking to me about my care, my future,my concern for unfinished things, my sorrow of not having him, my, my, my. He kept telling me "do not worry babette it will all work out". He started to remind me of where certain things were...what to do.......he went on and on to me about ME! His love and concern for all of us was amazing. He died true to his life...thinking of others first, kind, gentle, understanding and never projecting himself ahead of others. It was always "We" with Rick when he spoke...he never would just say "I". He always shared the glory... he was a team player.

My head and heart are so full of the love he had for me. As he laid on the bed dieing I kept thinking "what about him?" I could not help him on his journey through this valley of death as his body began shutting down. I was so thankful for the meds to take away any pain that were available. We had the presence of an earth angel named Cheryl from Palliative Care sit and walk with all of us until the end. I felt so helpless in helping him in his last hours of life here on the earth. The only thing that comforts me is knowing when he asked me not to leave him...I told him I would only leave him if I had to go for a "P". He laughed. I held his hand, stroked his face, kissed him, and hugged him until he was no longer with us. All the while I was devastated and could not believe these were my last hours and precious minutes with my beloved Ricki.

After his passing Val, Garth and I brushed his hair, cleaned him up and while he laid there waiting for the Funeral Home to come we all kept surrounding him with love and never leaving him alone as I had promised him.

I can't even convey to you the pain as I saw them lift my sweetheart onto the gurney and put him in a bag and roll him away! We all stood there hearts breaking and tears flowing and watched. I told the funeral attendants I was not leaving his side and I just had to stay beside him till the very last minute that I could. I walked along side of them pushing the gurney and told them to take good care of him because they where handling a "Prince". I stood by my Ricki until they slid him into the back of the black car. When they closed the back of the door with my precious Ricki in there and began to drive away I waved him goodbye and blew him a kiss until I would meet with him again and away they took him. I stood there sobbing and so full of grief that there went the greatest husband, lover and friend that I could have ever asked for.

I know we will always be together forever but it just won't be the way I knew it here on earth. I no longer will experience his voice, his touch, his hugs, his kisses, his encouraging and comforting ways.That has passed now. I have to let that life die but forever remember. I will be joined with Ricki once again in eternity in a new way! Where there will be no bipap masks in the way of our kisses. He will be able to dance with me once again. He made me a promise that we would dance together on the "sea of glass" and we would be Together Forever in eternity!

Funeral Details

2010-08-14T17:51:00.002-05:00

Time: 2:00pm
Where: Whitemouth Community Centre, Whitemouth, MB
When: Friday August 20th, 2010
In Lieu of Flowers you can make a donation to the
ALS Society of MB
http://www.als.ca/events/mysite.aspx?fid=4004

Jake (Rick & Joan's Son) here.......

2010-08-13T15:51:00.002-05:00

On behalf of my Mom, it is with great sadness that I inform all of you that Rick passed today at 12:32pm. I find it incredibly hard to accept that such an inspiration to so many, has left us. Rick touched the lives of everyone he met, so many that never met him and, not just through his living through ALS,was truly an inspiration to us all.

Funeral details to follow.

Jake

Joan here..."We are all in amazement"

2010-08-13T06:55:00.003-05:00

After all of us saying our goodbyes to Rick we are all in amazement how Rick pulled through the night. Rick has made it through the night and is fast asleep. He is very sedated. We are not sure what is happening right now. We will be know more later on this morning as the day progresses. All our children have surrounded him like precious jewels. We have spent an incredible hard night. Keep us all in your prayers.

Just when you think there are no more tears...they start all over again from deep within.

Joan here..."It's a New Day"

2010-08-12T06:41:00.002-05:00

Yesterday morning Rick and I went over so many of the encouraging and loving emails all of you have been sending to us. I am so delighted that when he wakes up again this morning I will have a bunch to read to him over our morning coffee.

Rick keeps trying to sleep but keeps waking up every hour. He is having flem issues this last couple of days and I can hear him trying to swollow. The meds are there to help him in his fight for breath and his body from pain from all the uncomfortableness. I keep giving him something to sip on as his mouth is always so dry. He is exhausted in his being as he struggles for each breath even though he has his bipap machine on.

I laid in the brodi chair as close as I could next to him through the night but could not sleep more than a wink or two as I kept checking on him. I look over at him and see his utter helplessness and vulnerability and all I can do is cry. He is the love of my life. As Katie wrote in her letter to grandpa "He is the other half of my heart!". I listen to every breath he takes as it is so very precious to me. I hold his hand all night and when he wakes I am there. I promised him he would not be alone that there would always be someone here by his side. These are truly precious days and hours for us together.

This morning as I was laying there with Rick sleeping on one side of me and a big window on the other side I started to watch the sky being filled with the morning light. The whole sky was slowly being filled with the newness of this new day. I was reminded in that second that Today was a new day...God's mercies were new today...His grace is sufficient for today....at that moment Rick opened his eyes and looked over at me and I reminded him of how God's mercy and grace was new for him today. Together we watched the beauty of this new day beginning. We were given today and believe me I was rejoicing and thankful for God's gift to Rick and I of "TODAY".

Now an hour later...the sky is filled with clouds...Rick is fast asleep...but my heart is filled with happiness in that special time we shared this morning in receiving God's gift of one more day together!

Thank you all for your continued prayers and support for Rick and I as we walk through this new day.

Joan here..."

2010-08-10T21:57:00.006-05:00

We are in the dreaded last days, the days that we have spent in denial about, the days we didn't really want to talk about, the days that we did not want to believe would be......

We had a somewhat of a breakthrough today with Rick going to the pottie. Palliative Care Cheryl sat with me while we made our moves on dear Rick. He had so much anxiety about what was going to all happen to get him to go once again. He doesn't have much reserve to endure much moving or hoyering. We had to cancel his hair appointment today....Thanks Amber for being so understanding!!!!

As of today his meds have been doubled.
He wants to remain "with it" so he desperately tries to be brave and struggles through uncomfortableness in fear that he will no longer be with us. His meds are a double edged sword....they comfort him but also compromise his breathing....his breathing has so diminished that the whole thing is a revolving door.

He has his list of things that are important to him right now. One of the things important to him is that he will be able to continue to be brave. I told him today the trouble with him and I being the first borns in the family is that we always try to suck it up and be strong even to our detriment. I told him it was "okay not to be strong", "okay to cry" ,"okay to be sad" "okay not to be brave". I loved him just the way he is. He IS brave, he IS strong and he can have some down days...it IS okay!!!!!

He is now just facing the fact that he is sooooooo ill. This week he has taken a real down turn in his health. He isn't trying to be strong...isn't trying to give you a big grin....isn't trying.... he is resting in the grace of God, He just is!!!!!

If there are things in your heart that you really would like to say to my dear Rick....please take a few minutes and email them to me so I can read them to him....he delights in receiving emails and we go over them together in our ritual morning coffee together. It maybe through a straw and it maybe only a few sips now...but we still do morning coffee together! For that I am so grateful for. Thank you for keeping us in our prayers!
rfewster@mts.net

Joan here..."Never say never....it may come back and haunt you!"

2010-08-07T19:06:00.004-05:00

How are we doing? Well.........we are doing great between us....but we do have some physical challenges that we are trying to overcome. For the last two days we have been trying to unplug Rick. If this gets a bit too much info please do not read further.

I have given Rick two enemas a day for the past two days...nothing is happening and he is in such discomfort. The last time this happened we spent days in the hospital unplugging him. Despite our 3 day strick bowel regime since last November we have once again run into the same situation.

We have been desperate to get things moving for him. Between the full time tube feedings, stool softeners and all the meds we are back to the plugged situation. This is about as descriptive as a person can get as to where things are at. We read about this issue at first diagnosis but never thinking it would happen to us. Well we are now here........can't believe it.....can't believe that I would even do this......but yes, I hand picked everything out that I could so Rick could find relief! What we don't do for love!!!! Just a reminder to everyone...don't ever say..."I would never!" because believe me........I am living everything I have said that I would never do!

We are only hoping now to avoid a trip to the hospital as we live in fear that Rick would never make it back. He is so weak in his body...in his breathing....he is exhausted!

He is a man full of joy and full of high spirits and wants to live! Please do continue to pray for him....that he would continue to live in the peace that passes all understanding.

He asks that I sleep next to him. So I sleep in a brodi chair...kinda a like a lounge chair with wheels...better than a hospital chair but that is about all. I sleep next to him so I can hear him breath and be right there when he wakes up...which is quite a bit. He gets frightened as he sometimes can't use his voice to call any longer at night as his throat dries out so bad. I then am near and give him his meds every 4 hours and a drink or whatever he needs. One of the sweetest things ever is sometimes in one of his middle of the night wake up times he tells me how thankful he is of the way I have taken care of him.

Home care has added another night and Sunday mornings for us. I have two sleep over nights a week now. Because of Rick's disease either I or a family member have to be present to administer the meds every 4 hours even though they may be here for the night. So far Jake and Val, Doreen and Wendal have taken the 2 and 6 am shifts for me for the first sleep overs.

After a very difficult day today with bathroom issues....our little Katie came bouncing in with her new delivered internet purchase...the violin....we were honoured to hear her first practise performance. Rick said it was the best violin playing he has ever heard! We both just cried as it was such a gift of love! It is the effort that counts these days!

Rick and Joan here..."Miscellaneous"

2010-08-01T23:18:00.020-05:00

Rick's dad Wendal, his baby bro Garth, his sis Shirley, and his mom Doreen spending an afternoon with Rick. Rick was so happy to visit with them all. He is so appreciating the time he has with them.

Here is the sis Shirley that Rick teased all his life! She is now in a position to tease him. Payback time! LOL.... nothing like feeding the guy who tormented you as a kid!!!!

Here is Rick with Clif, Cianna Joan, Jen & Jorgina and our newest edition baby Cash. This last pic is so cute....Cianna Joan hiding and baby cash crying! The pics a person never gets to see...we usually only pic the good smiling ones! lol

Here is sister in law Nancy, Rick and Brother in law Bruce.

Rick and mom.

Nephew Matt and Naomi and Rick.

Bro Garth and Dad Wendal hoyering Rick up for the day. Nothing to simple about this one.

Katie has it in her heart to play a violin. She was so desperate that she bought a beat up guitar at the ALS garage sale in spring and added a metal clothes hanger to it and began to what she calls...playing the violin!

Through her determination she went on line as an 8 yr old and typed in violin under a 100.00. Yep...you guessed it...she found a site that caters to young beginners who want an instrument for cheap. She now has a calander and stroking off the days until her violin arrives!!! Remember...she was the one who had the dream of an ALS fundraising garage sale 2 years ago. Bless her determination and vision!!! I wish we all had such drive and confidence!!!

Our nephew David and his mom Kathy surprised us with a visit. David has been our computer wiz for years now. He has so generously purchase a new tech head gear software program that allows my brainwaves to control a computer. We will be reporting on how it works. It is on its way now.

Had a great visit with my brother in law Blaine and sister in law Carol.

They took time out of their busy schedule to come out and see me.

Now....here is the last but not the least!!! It is our grand dog Sebbie! Short for Sabastian Jacob!!! Rick and I call him a "heshe" dog. Don't even bother to ask why!

Anyways, he has found himself in a floating device pool toy that is just right for him. He spends countless hours coming over here for treats and to get special pats from our visitors!

Joan here..."My blog on Father's Day"

2010-07-30T11:02:00.004-05:00

I have done much soul searching in regards to what I had written about Rick's last Father's Day on the blog. I have found that I truly judged and had expectations on all three of his children. I love my husband from the core of my being and saw that he was hurt. I took that hurt to being my hurt.

When Rick and I got married in our vows we said "my family would become his family, his family would be come my family". That was all wonderful and great for the two of us to proclaim such love and devotion to the world. The only thing with that was none of his kids or my kids or families had a say in any of it. We took what we wanted and this past 14 years continually applied that perspective when dealing with all of our kids and our families.

Because I have shared my hurts, loves, pain & journey openly on this blog I want to continue to be transparent even when it comes to my failures. I faced many dark corners of my being in dealing with this. Colleen, very rightly, asked me how come I didn't tell them first about their dad's hurt before blogging it. The truth is that I just didn't have that kind of relationship with them. It just made me even angrier with all three of them. To the point of telling her to leave, and then to the point of telling her to "FO" and it wasn't the shortened version.

Initially, I kept going back to all the times of my own hurt from them. I went on an emotional spiral in my being. My anger I have had towards his kids, his disease, being accused of many things and on and on it went to the point I just kept getting angrier and angrier about it all.

I discovered as I uncovered those many rocks laying deep within my soul that I really didn't love these kids in a way that I had professed that I would and had wanted to. My own kids have said and done really awful things at times to me also in the past. But as a Mother even though it would hurt I would lick my wounds for awhile and then just continue to be a mom and forgive, love and support them no matter what.

This is what I have never done in regards to Rick's children. I have never forgiven and let go of the things that I have felt they have done to me or their father.

It is not in my place to judge them or put MY expectations on them. They need to be free to love their dad in the way they choose to love him. Because of the time frame we are dealing with right now...the stress load and the emotional demands have been increased to immeasurable proportions for me never mind even considering for a moment what it is doing to all the kids.

The only thing is I have never opened my heart to even consider the pain, the anguish and sadness that Rick's children would be going through in each their own way in dealing with their Dad's terminal illness....not doing it my way...not the way I think they should be going through it or handling the situation, ....somewhere in all that darkness in me a light dawned....never mind the unforgiveness I have had towards them but the fact that to the eyes of the kids they lost their dad already once through divorce and all the pain that went with it and now once again they were going to lose their dad for the second time. I can't even imagine the anguish of soul that they are feeling right now. I have never loved them enough to even talk to them about it. I have truly disappointed my self in my ability to love them.

It will only be through God's grace and mercy that they will ever find it in their hearts to forgive me for not loving them with a true mother's heart...God's love!

Rick here..."A letter from Katie"

2010-07-29T09:15:00.004-05:00

At the end of a particular difficult day there was a little knock at the door and our granddaughter Katie came bounding up the stairs with this letter. She came over to my bed and leaned on her elbows which is a sign that we are going to have our heart to heart talk. She said "Grandpa mom and dad have been talking to me and I know that you are not doing very good. They said if I have anything that I want to tell you that I should do it now so I put it in a letter for you. As she turned to go she looked over her shoulder and said "and grandpa I want you to know that EVERYTHING in that letter is true!" Then off she skipped to bed. What a gift!

(Typed as she printed it spelling and all. It now sits framed in our suite and forever in our hearts)

"grandpa with out you the sun would't glow.
Your the one who keeps the earth spinning.
Your the one who keeps the flowers from wilting.
When I'm feeling down you cheer me up with love!
Without you I wouldn't have lernt: chess, fishing,reading,riding my tricycle, how to face my fears.
Your the other half of my heart.
Your the day light of my day.
Your smile is as bright as as sun glow.
your the one who inspired me to be a musician.
If you weren't here I wouldn't have been to banff.
Your a wonderfull grandpa I couldn't have asked for better.
You touch my heart and you always will no matter what.
your the one who told me to never give up.
Your the one who went through all that trouble to build that playhouse."

Joan here...."The Joy of the Lord is my strength".

2010-07-27T09:45:00.006-05:00

Over this past 2 1/2 years we have had many people say to us..."I do not know how you two do it!" I found this little ornamental stone cross at the $1.00 store one day and it says it all..."The Joy of the Lord is MY strength". It sits on the little stand by Rick's hospital bed and every time I go to put water or clean the hated bipap machine I am reminded of where I need to focus and it lifts my spirits.

I just returned the manual wheelchair this am. As I was pushing it down the street heading to the post office I felt like I was walking a walk of memories of when we got this first wheelchair and places I pushed Rick in this chair. Remembering how angry I was when I first saw it and how I gave it a quick kick, how I nearly tipped Rick into the puddle of water at the end of our driveway in our first test run...on and on the memories came as I pushed this empty chair. It was so bittersweet!

We have been so busy with getting Rick's meds and bipap machine increased, doctors, health care providers and etc. We have been noticing changes every couple of days in his breathing and comfort level. So with every change there are a lot of adjusting to do in every area.

Our software specialist nephew, David purchased a piece of new technology head gear that reads brain signals. So we will write more on that once we receive it. I keep teasing Rick he will have to watch what he is thinking because we will all see it on the computer screen! :)

We just cancelled out trip to Wpg to visit the Health Science Centre for a meeting with his respirologist Dr. Janice. He just is not up to that length of bouncing around in a van. I am afraid his travelling days are over. They do have a Tele Health System situated in various areas in MB. Who would have thought....Whitemouth has one!

We have been amazingly treated and taken care of by the Health Care System in our area. NEHA has been amazing with sending us incredible people to deal with Rick's care. We have an absolutely wonderful Dr. Spence, Cheryl Palliative Care, Laura Home Care, Alva Registered Nurse, and our home care workers, Carol, Jeannette, Julie and Debbie. Never mind our fantastic OT Louise!

Lets not forgot the most incredible one of all is my husband Rick who has kept his joy and thankful heart through all of this. What he deals with each day is above and beyond what I know I could ever endure with such grace and thankfulness of heart that he always has! He is moved and hauled around by mostly us ladies. He depends upon us to be quick on our toes and keep him hooked up to his bipap machine at all times while transferring him. This becomes especially important when we keep having these summer storms and the power goes out. It takes a bit of strategizing each day before we start the transferring and hoyering process. He sits or lays for 24 hours a day without moving anything but his head.

Rick depends on us for his food (feeding tube feeding) and for a couple of teaspoonfuls of reg food every once and awhile as a treat, his 1/2 cup of morning coffee, meds, his complete toileting, even steering his wheelchair now, positioning him, scratching an itch, reading to him, changing channels now on the tv as the sip and puff is no longer useful, everything he needs he is at the complete mercy of whoever is his caregiver for the hour is. We are his hands and feet! I am so proud of him! As our doctor told me...."He is a brave man!!!!" Thanks for keeping us both in your prayers especially during this more bumpy part of the journey!

Rick and Joan here...What months....no we got weeks???

2010-07-19T20:16:00.004-05:00

Well...we are here...what does that mean....what happened to months.....we are talking weeks....
We have breathing issues......unreal!!!!
I thought we would change the issue of breathing by meds....I found out that I will never change the breathing issues....
Rick and I are so grateful...we have been in consultation with our respirologist and palliative care as we try to increase the variety of meds available to us to try and keep me from struggling to breath. I am pretty much a prisoner of the breathing mask now as I am only able to remove it for a few min of a time and that is what is at the help of some very strong meds.
I thank God that I am able to speak all though with not much volume....
Each day never mind week...things are changing for me......

Sadly, the slow slippery slide of this disease is picking up at incredible speed this last few weeks!!!

Joan and I are fighters and we will never give up!

Rick and Joan here..."Rick's mom and dad"

2010-07-11T15:20:00.004-05:00

Rick's folks are amazing! They are both in their 80's and they come every two weeks when it works for them to spend time with their oldest son. This should be a time in their life where they are foot loose and care free but unfortunately, have not had this luxury this past while.

Rick and I have many cherished memories of going to Wisconsin Dells, New Foundland, & Vancouver Island with them.

We had so very many laughs with them in our travels. We were with Doreen & Wendal shooting pool , getting "Screeched in", going into the mines under the ocean on Bell Island, Doreen almost falling into the ocean as she touched the ocean for the first time in New Foundland.

Watched them take off in a helicopter, hearing about the not so famous "House on the Rock" from Wendal (which we drove a few hours for him to see as we thought it would be right up his alley! lol) them witnessing my first attempt to book a motel on line and finding out what you see on line was not what was there for us when we arrived in Wisconsin Dells.

Witnessing how Doreen would spot and point out the whales way out in the ocean before any of us on our whale watching tour even got a glimpse they were there. Out of the blue, being invited into a house boat on the Victoria Island Harbour to get THE tour of a home that was featured in a magazine. Watching them ride away on the rickashaw as they headed out for a evening dinner. Watching Wendal and Doreen have an artist draw a pic of them on the harbour. Having the most exquisite dinner for my birthday with the wine paring experience. One of the weird things was touring through the Titanic Exhibit with them in Victoria. We were all given tickets to board the ship with real life names of people and occupations. At the end we found out who lived through the Titanic. Wendal, Doreen and I lived through it but Rick was one of the ones to perish. Rick and I often look back at that moment and go "wow, that was so weird!".

It was so important for Rick to go with them to the Atlantic Ocean and to the Pacific Ocean. We experienced "Mile 0 to Mile 0" in Canada. These are all so many memories that are fresh in Rick's mind about his folks never mind when they come here and take care of him!

Kudos to you Wendal and Doreen!!!

Rick here..."Me and my urn!"

2010-07-04T14:26:00.006-05:00

Now that we have internet once again....we are back.....Joan and I started this blog as a way to keep family and friends up to date on how things were going so we wouldn't have to individually contact people each time there were changes. If they had questions they could initiate contact with us. This left it up to who ever wanted to know anything they could read our blog for themselves. We determined from the start to be as vulnerable and transparent as we could be in sharing our perspectives, our victories, our defeats, our fears, our hurts and our triumphs. After all....it is our story. There have been a couple of unexpected rewards for us. We have made friends with people all over the world. And have also found that blogging helps in confronting and dealing with the life issues, good and bad, that we have had to face fighting ALS.

What it boils down to especially now is I am face to face with death in the near future. As I shared in the previous blog I am an incurable optimist but also a realist. Outside of a miracle given the rate of decline of my breathing ability death knocks at my door. I am fighting the good fight and I am certainly not given up but would be a fool to deny what lies ahead. I have found that it takes a lot of intellectual and emotional fearlessness to confront these things head on when you are actually in this situation. Taking into consideration that any one of us could not be here tomorrow it is just in my situation it is obvious in the way my vitals are declining that it is no longer theory but very practical and real.

ALS affects every body so differently. In my case, I am so thankful that I have not lost my ability to speak. In saying that, there have been tonal changes and I am dealing with hoarseness and stubborn flem in the mornings that I have a hard time clearing to be able to speak. My actual ability to form words has not yet been affected. What does happen though as my lungs have become weak we have noticed this last while that I don't have the air to force out in order to create sounds. I actually speak more loudly with the bipap on as it forces air into my lungs so I have something to speak with. I have noticed that after a while I actually start to talk in a loud whisper. I know this is the beginning of my voice no longer being able to project audibly.

No one knows the future but given the rate of decline of my breathing and the degree of speech capability that I now only have I still hope to be able to speak even though in just a whisper to the end of this journey. That is a tremendous blessing and as many with ALS can attest to!

Having lost a couple of friends recently that we got to know through the ALS Society it has prompted me to finish up some of the details concerning my passing. Joan and I went ahead and got our memorial stone picked out and placed at the Sperling Cemetery quite some time ago. That in itself was an emotional feat! Some of these kinds of things are a whole lot easier to do when your demise is way down the road then it is when you know that you have limited time. It takes an incredible amount of emotional reserve to take care of these things.

I am determined to take charge of these areas so that Joan is not left to deal with them on her own at the point of being at the peak of grieving. I was honoured to have been given a hand crafted burial urn for my ashes from a dear friend of my Uncle Keith. I love it! but have to admit it is quite a mind warp and an emotional experience laying immobile in my hospital bed looking across the room at it and thinking hmmmmmm my earthly remains are going to be in there soon. Very weird! After awhile of having coming to terms with it we now have it safely packed away until needed.

I am looking after some of the other details as far as choosing a funeral home and deciding on things like whether to have a viewing first or not, details of a memorial service, writing my obituary, choice of songs and several other details. I am in the process of thinking about having a traditional funeral or even not having a funeral at all.

With all of this it stirs emotions deep deep into my being. I guess this is all part of the grieving process and dealing with the transition of my passing from this life to the next and letting go. I know that I am going to go to heaven but I just don't want to go anytime soon! For me, each day means so much as I see the sand in the hour glass running out! I believe eternity awaits all of us but I am determined to squeeze the best out of every day that I have left for I will not walk on this earth again as I now know it. Hey come to think of it....I can't walk on it now! :)

Before you write me off as just being morbid you have to realize that I would bet nearly 100% of people with a terminal illness that have the luxury of having a rough idea of their time left go through the process I have described. I have simply found it easier to embrace the reality of my situation rather than avoid it. Another example of things people think about but rarely speak about is the whole issue of suicide when facing a terminal illness with no hope of a cure and every certainty of hellish suffering.

In the early stages of the illness I dealt with those choices as well. I have known of some ALS sufferers who did chose to end it all earlier. I do not judge them and believe it actually takes great courage to make that choice. It is just that for me that was not an option. I wanted to squeeze the best that I could out of every minute that I have. The irony of this illness is that when you have the ability to end it yourself you still have enough quality of life left to want to hang in there. By the time the quality of life is gone you are no longer able to pull the plug. To me it is important to go down these different paths in my thinking and not to be afraid of speaking about them and letting people understand your decisions and choices.

"Even though I walk through the valley of the shadow of death I will fear no evil for YOU are with me!"

Rick here..."Honey want to go quading?"

2010-07-04T13:22:00.003-05:00

In our part of the country if someone says "Do you want to go quading? It means a couple of fun filled hours ripping up and down woodland trails, splashing through swamps on an all terrain vehicle. It hit me the other day, that when I ask Joan to go quading it means "taking her quadriplegic husband out for a walk in the power chair with her steering the chair". lol This pic was taken at one of my favorite spots in Whitemouth on the old town bridge. It is a very pretty spot.

I have been trying to come to terms with the reality that I am essentially now a quadriplegic. My mind has still not got wrapped around the reality of my physical condition. I am still the same person inside even though I can no longer, walk, eat, go to the bathroom myself, lift a hand, and scratch an itch, never mind scratch anything else. I can feel everything even down to the mosquito that would land on my foot. I look at my legs and arms and try to move them with the same success you would look at a chair and try to mentally pull it out from a table. It just doesn't work!

One of the hardest things has been developing the mental toughness to deal with the constant itches, cramps and discomfort and pain that being immobile brings. Joan has been fantastic in trying to keep me comfortable. But there is only so much any one person can do. With ALS you just have to draw on your reserves to get through it.

When I was healthy and I thought about "me" it was all inclusive. My legs, my arms, my mind. Everything was just one big entity. As my body continues to give out I have found that "me" has nothing to do with my body. But instead, is a spiritual being who simply uses this body to get around on earth. I knew all of this as I am sure you do theoretically but I know it now as a truth not a theory. A good analogy would be a driver in a car. The car lets you get around but it is not the driver! Same goes with us in our bodies. At some point or other the car gives out and the driver steps out of it and walks away. Again these are concepts I have always acknowledged but now am learning about at a whole different level.

This last number of months as my chest muscles have continued to weaken and breathing has become so very hard even with my meds and bipap. It forces me to confront my own longevity in a much more direct way. When your legs and arms weaken and give out it is very hard but you can compensate by adapting how you do things by using things like the power chair or simply by not doing somethings at all. Breathing is not like that. As your breathing gets tougher and tougher you have to face your mortality in a whole different way. It is no longer theoretical. The bipap machine has been a God send and has actually extended my life by months. I know that without it I would have been gone already.

We are now using meds 24/7 to help trick my brain into thinking I am getting enough oxygen. We will continue to increase the dosages as needed to provide me some degree of comfort but you can only go so far with that as well. This brings a relief from the struggling and anxiety of trying to breath. But I must confront and deal with the fact that we can only go so long like this before even that won't work any longer. I have personally chosen not to go with a tracheotomy at the time that my lung muscles completely give out. This is a very personal decision and everyone is different. In my case, I feel that it would extent the pain and suffering past the point that I would be able to deal with. It would also put an unimaginable burden on my loved ones. I might have a different perspective on this procedure if there were any hope of a recovery but at this point with ALS there just is none. I made this decision very early on after diagnosis and much study and practical experience have only reinforced it my mind that for me this is the right choice.

As you know, I am an incredible optimist but also a realist. I guess growing up on the farm at Sperling built that into me. My reality is that if everything goes right I will be lucky to have a very few months left barring any kind of chest infections which could take me out in a matter of days. Each day is precious and the things that really matter become very clear. Like the old saying goes "Nothing clarifies your thinking more than to know that you will be shot at sunrise!".

Joan here..." Happy Canada Day/Hail/Homecare"

2010-07-04T12:33:00.007-05:00

Rick thought he would get in on some of the "Canada Day" action even though he spent it in bed! Cute cap "EH!!

Yesterday, we were hit with a big storm and lots of rain and hail. The hail was the size of a loonie in places.

Rick says he loves watching the storms and the weather. Must be the Sperling roots at work here! We love using the intellicast weather radar system on internet to tract these storm cells.

We had our very first homecare 24/7 overnight respite here. Jake and Val took care of all the feedings and meds that needed to be administered so this could happen. Rick's mom and dad have been so faithful to have been doing this throughout this past year to give me a break. If either one of them would get sick...I would not have their back up so Rick and I have been working on putting this in place.

For any of you who have walked the ALS journey you will understand what a danger care giver burnout can be. It sneaks up on you so you have to stay ahead of it if at all possible.

We are so fortunate to have the homecare team that we do! Just wished they were allowed to do some of the basic care that ALS unfortunately prohibits them from doing under normal care.

We just can't leave Rick alone at any time at all without someone here who I have trained. Homecare can't do regular feedings, tube feedings, administering meds due to the nature of the ALS disease. There has to be one of us available to do those things.

I found out it takes quite a little bit of organization and scheduling for me to have a day off with Homecare here. Because Rick's folks and Jake and Val have been here learning step by step along the way with me they can come in and just get updated. But for anyone else they have to be trained first as you can't just jump in and take care of someone with ALS if you don't know the way of the disease.

We are in the process of having our respirologist put together a protocol for the ambulances in the area to have on file. So if our address comes up they already have all the info on file. Palliative Care suggested that we do this to eliminate any confusion. For example...if you don't know ALS and he is having trouble breathing you would assume you would just give him oxygen...well that could actually cause him more problems!

I have made a list of what should be done in case of an emergency now posted on our fridge along with the ERIC kit and Advanced Care directives and phone numbers. This should eliminate some last minute flurry should we need an ambulance. Rick has to have the bipap with him at all times....even in an ambulance. His bipap has it's own personal settings so where he goes it goes! This is all gone beyond being simple!

Joan here..."We are still here...just haven't had internet for a week!"

2010-07-01T18:57:00.002-05:00

Sorry to have worried you folks out there. We had quite a week!!!! One evening around 11:00 pm at night the hydro wires from the pole to the house started arcing and caught on fire right at the house connection. You can imagine the flurry. It is right outside the door from our living area. Rick's folks were at our place giving me a break and here they are watching this happening with Rick laying in his hospital bed. My days away have been turning out to be on the disastrous side.

Jake's experience as a fire fighter sure paid off. Within minutes everything was put out. Hydro was off for an hour and a half only due to Rick's condition they made a special trip to fix it all. Gladwin showed up with a generator to get Rick's air mattress hooked up as he had laid there for awhile with no air in it. Very frightening as the hospital bed wouldn't work either . Jake moved Rick's wheelchair with adrenaline power over to where they could hook Rick up for air. Home care and the rest of us learned how to crank in a hurry. So we have spent the week with a lot of things out. Rick is right now gleefully in a hospital bed that is once again electric! Homecare zipped around as fast as they could to get us a replacement bed which we are so incredibly thankful for!!!!

As far as the internet access we are hoping in the next few days the routers will be in and installed. I am using my sister's computer to type this. Rick and I have really felt isolated this past week with no internet etc.

We were so thankful Jake and Val were home to immediately deal with the hydro/fire situation. IF it would have been any later in the evening it could have been too late for everyone in the house...not a pretty thought!

My days off have been quite stressful that is for sure...the fire last Friday....and today when I left in the am I took out two cars with me!!!! Not proud of it...I still can't believe I backed into the homecare worker's car and really damaged it as well as Val's car. I couldn't just hit one of her doors no.....to make matters even worse...I had to back up and smack both the doors!!!! I am really thankful they have forgiving hearts that is for sure. Rick and I always joked as it was always him hitting something and denting the car so for me to do this was a real hit to my driving pride never mind my record! Can you say STRESS anyone???

Besides all this fun, this week has been a week getting Rick's meds full time in place on a different level. That is stressful in itself! He takes alauded for long term relief and 10 min before he eats or dresses or gets moved he gets other meds to get him through. He only has his mask off for minutes at a time even with all the meds. He keeps asking for the bipap after a couple of minutes of being off it. So stress was the key word for this past week that is for sure.

He continues to be in good spirits despite the discomfort of his challenges for the day. So for that we are so thankful and never mind the fact that everyone is safe!!!!

Rick and Joan here..."ALS Volunteer Awards 2010"

2010-06-24T13:12:00.007-05:00

We were so surprised and honoured that we were one of the receipients of the Frank Edmunds Volunteer Awards of the Year for the ALS Society of MB. We were not able to attend so our granddaughter Tia volunteered to accept the award on our behalf.

We are so proud of Tia's courage to go in front of strangers and for giving an acceptance speech for us. Way to go Tia!!!!!

Jennifer Staerk nominated us for this award. She gave a very touching speech about us! Thanks Jenn also for bringing Tia with you!

This year was the first year they presented a special award for "Youth Volunteers". How very fitting that this year's receipient was the daughter of our dear friend Brian Cava. Way to go Kaitlyn!!!!

The Winnipeg Frank Edmunds Award winner was Kelsey Jackson.

Congratulations!!!!

Rick and Joan here...."Meeting with our Advanced Care Team"

2010-06-22T11:45:00.006-05:00

We had a busy day yesterday. Our kids just came back from a couple weeks of holidays and so it was once again full of action for us here. It had been a very very quiet two weeks for us with them gone. My Aunt Dot and Ted camped out here for the weekend. They cooked all the meals for us and helped me move some heavier items around. It made the job so much more easier and fun.

Besides all the rain we have been getting everything is looking pretty good in the yard. The flowers and gardens are looking so full of life. Rick loves herbs so I put together a small herb garden right on the deck where he can enjoy them as he sits out there.

We met yesterday with our Advanced Care Team. It consisted the Cheryl Palliative Care Co-ordinator, Laura the Home Care co-ordinator, Alva our Home Care nurse and our very own Diana from the ALS MB Society. Quite the team....our physican was unable to attend this initial meeting but is also on this team.

It was so good to sit down and ask all the questions you can imagine and to draw on their own experiences. We feel so fortunate to be surrounded and have access to these incredible caring professionals. With all the hard questions we ask come all the raw emotions with it all. We talked about end life issues, my being over extended with caring for Rick, where does he want to be when he passes, how do the meds work, what kind of help can they provide for us and much much more. We even discussed how the passing of our friends Brian and Ken affected how Rick and I are feeling right now. Rick and I from the start have tried to face our challenges with frankness and openness. Believe us...it is not always so easy to do...sometimes we would just like to stick our head under the blankets and stay there.

Rick will now have a caregiver sleep over one night a week as well as an increase in his tube feedings to get his weight stable again. The aim is to establish comfort for him on this last part of our journey. We have new meds on the way that will ensure his escape from discomfort. Moving him has become very uncomfortable and he can only go without his bipap for very short minutes of times.

Medication will be used also to relax him and trick his brain into thinking he is getting enough air...especially during showering, getting dressed and eating times. He eats very little as he gets too tired from trying so hard to breath. His feet and now his hands are regularly very swollen. His fingers and hands are starting to curl inward.

We did ask some different questions like...if he needs to be transported by ambulance how do we manage his breathing if there should be no outlet for the bipap? They will be checking into that one for us. Our team all agreed that Rick has done as well as he has because we have been able to avoid any chest infections. We now more than ever can NOT have anyone near Rick with any kind of sneeze, cough or indication of flu etc. as this could be the cause of his end.

We talked about the very end of life issues concerning medications, how the end usually goes with ALS patients and also the way he is progressing and how much time we may only have left. No one can give the exact time etc. but by how the progression of the disease is going there are some very definite tell tale signs of what is ahead. In knowing that info we also know that God is bigger than it all!

We had an emotional evening just having to deal with the reality of it all once again. Today, is a new day and we are off and running once again with new vision to keep Rick as happy and comfortable as possible and knowing there are so many people out there that will help us, are helping us, praying for us and encouraging us along the way!

Joan here..."I feel so sorry for my husband"

2010-06-20T20:32:00.002-05:00

I grew up with a dad who was an alcoholic and came home very late every night after the pub closed....he never took me on a holiday....he never was at my teacher meetings.....he never did a lot of things with me...he wasn't perfect obviously.....but you know what???? I always went to see him on Father's Day....He was my Father....I knew in his own way that he loved me!!! The only thing is that he didn't get a divorce.....maybe that is what makes a difference to a kid.......I love you dad!!!! To my dear husband who is kind and wonderful...who I feel so sorry for ....and that this is his last Father's Day.....not one of his kids came here in person today on Father's Day! What more can I say!!!!

To all of you who have a Dad no matter how imperfect....appreciate him and love him, once he is gone...it is too late!!!!

Rick and Joan here..."Small world"

2010-06-06T13:06:00.002-05:00

Here is the link to Brian Cava's obituary http://www.passagesmb.com/obituary_details.cfm?ObitID=165318

It sure is a small world! While reading Brian's obituary last night I realized that his wife Kathy's maiden name was a very familiar one to me. Upon further investigation I put two and two together to find out....

That Kathy's family and our family had connections from way back when both families lived in Regina. I realized that I had known Kathy when she was a toddler...yikes...that made me feel forever old!!! Here her older sister Pat and my sister Kathy Y. were friends and would push their little sisters Kathy Cava and my youngest sister Colleen around in strollers together!!!! Yikes...when thinking further about all this I even remember going into Kathy Cava's parents house in Regina. They lived only a few blocks away from us. Wow!!!! what a small small small world!!! And to think after all those years we met once again years later at an ALS Conference last fall and continued to be in contact with them after that.

So little Kaitlyn I can honestly say I knew your mom when she was a toddler!!!!! The paths of life are indeed strange!!!

Rick and Joan here..."Our dear friend Brian C. has passed!"

2010-06-02T20:56:00.004-05:00

We were so saddened to find out this am that our dear friend Brian Cava has passed. He lost the battle with ALS this morning at 5:00 am in his sleep. He leaves to mourn his beloved wife Kathy and his precious daughter Kaitlyn (11 yrs old). If any of you have watched the ALS commercial or education video you will meet him and his beautiful family. He was only in his late forties.

Brian fought this horrible illness like a real hero. It attacked him with ferocious speed. He was only diagnosed a year ago this month! With most people ALS either starts in the limbs and spreads from there or else starts with the speech and spreads that way. With Brian hit him everywhere at the same time! With typical good humour he would joke that us "Cavas" do things in a big way!!!! He sure did!!!! He also said" his cup was half full not half empty!" We will miss you terribly Brian...your jokes, your desire to TALK to everyone, good nature, and your courage!!! Joan and I will never forget our night of watching your home videos at the Brummit Feasby House that your bro put together especially for you!!!

Rick and Joan here..."Beausejour Early Years School"

2010-05-26T21:22:00.004-05:00

Thanks Martin for getting us to BEYS safely and on time!

We had a wonderful time once again with the students and staff this afternoon!

We are always still amazed at how wonderful the students welcome us!

We showed the two new dvd's on ALS and kids sat quiet as mice until they were over then burst into applause when they were done. It really brought tears to our eyes! About 2/3 rds of the kids had been there last year for our presentation and you could tell they were affected by the way the illness has progressed. We had a very long question and answer period afterwards and again we were amazed at what insightful and pertinent questions the students asked.

After the presentation was over the students formed a long line and filed by Joan and I to say hi and and to give me a high five! Many offered words of encouragement, care and thanking us for coming!

Thanks so much to the teachers, staff and students who made a way for us to come and visit your school once again this year!

Joan here..." ALS Educational & Sponsorship Video links"

2010-05-21T15:33:00.004-05:00

The ALS Educational Video and Sponsorhip Video that Rick and I happen to be a part of is now available on line on the ALS Manitoba Website.

http://alsmb.ca/index.php?page=default_templates (18 min video)

http://alsmb.ca/index.php?page=support (3 min video)

Special thanks for your kind note Carrie from TN. Rick and I both have enjoyed getting feedback from those of you who have been reading our blog. In these videos you can see first hand how we go about some of our daily routine in caring for Rick. Hope this gives you a bit more information to help you Carrie in the wonderful work you are doing with your ALS patients. If you personally would like to contact us please email us at rfewster@mts.net

Rick and Joan here..."Little Cash has arrived!"

2010-05-20T19:25:00.004-05:00

I just started to cry this morning when Jenn called to tell Rick and I that our 10th Grandchild was born today! He weighed in at 7 lbs 14 oz, 20" long born at 8:33 am this morning! We now have 5 grandgirls and 5 grandsons and 2 more on the way! Wow!!!!

It is so nice to have good news!!!! and this sure was great news!!! We officially have 2 quiver fulls of grandchildren!!!

As a bonus I got to spend all afternoon at the hospital with Cash's mom and his two big sisters and son-in-law as well! He is a very peaceful baby! It was so wonderful to hold him! I took lots of pics and film to bring back to Rick so he could enjoy Cash as well!

Joan here..."A few links and updates on Rick"

2010-05-20T09:16:00.002-05:00

http://www.alsindependence.com/Two%20Great%20Walks%20%20for%20ALS.pdf

http://alsmb.ca/uploads/Pdfs/Tia%20%20Katies%20Garage%20Sale.pdf

These links refer to the latest fundraising articles written on Tia & Katie's Garage Sale, Whitemouth & Reynolds School Walk for ALS.

Update on how Rick is doing health wise.
He is on comfort care. He is officially taking medication that tricks the brain into thinking it is getting enough air so he can relax especially when we are going to move him, get him dressed, showered or fed. He is on the bipap all day except to eat and shower. Yesterday, was our first day using the medication and he couldn't believe how it relaxed his breathing so he could eat and shower without a great struggle.

We have been enjoying the really warm weather.
His skin seems to be so sensitive to the sun and turns red really quick. We are not sure if it is just a reaction to possibly the quinine he takes for cramping or not.
Just driving out on the yard is so bumpy and jarring for him. The sip and puff doesn't work for him on uneven surfaces and with his bipap on it is a bit too much for him so I am the one who drives the wheelchair for him.

We are trying to soak in as much of the sun rays as possible. He sat on the deck while I worked with some flowers and cutting down last years old growth on the rose bushes. It was something he and I always loved doing together. I was so happy that he took some enjoyment in just the newness of the planting season. I like the finished product but he always enjoyed the nurturing of the plants. So he kept me hopping with instructions how to do things the right way. It just must be so incredibly hard for him to watch me struggling to do things he so enjoyed doing! Now, he just sits in his chair trying to stay in the shade and away from all flying creatures! Now that is going to be an interesting task....keeping the bugs away from him! Especially living in MB!

Rick and Joan here..."Whitemouth and Reynolds Schools Walk"

2010-05-18T16:54:00.012-05:00

Whitemouth School Walk Friday May 14th.... Beautiful sunny Manitoba Day!!!! Once again we don't show the pics of the students...there were alot of them!!!!

Thanks so much to all the students, staff, family and friends, Lions Club, our homecare workers, Whitemouth for your generosity and participation in this years walk! Special thanks to our dear Uncle Keith - Calgary, Bill and Shirley Pipke - Chattham for coming so far to join us in this event!

Together we were able to raise approx. 10,000.00 for the ALS Society, which means people like me get to receive equipment and help in dealing with this terrible disease. Never mind the research that will happen to try and find a cure!!!

Thanks to all the people who bought and sold the raffle tickets. The lucky winners were....Del Fewster ( wow...a cousin), Mary Ash (Nick Drobot aka Elvis's mom), M. Gross and Val Larkin.

The day was a great success....sunshine and all!!!! Special thanks to the Lions Club for the donation and hot dog bq!!! Diana, Brian & Sharon ALS Society, Special thanks to our coorporate sponsors...

Blaney's Enterprises, Hair by Amber ,Whitemouth Hotel, Horizon Insurance, Conroy's Collision, CJ's Service, Sunova Credit Union, Whitemouth Pharmacy, Whitemouth Dental Clinic, Hilltop Bakery, First Stop Grocers, Whiteshell Chairs, Brereton Lake Resort, Kent at Dunn-Rite Foods (Wpg) , Kyla Tyndall.

We are so overwhelmed by the tremendous support of the Whitemouth School Students, community,our friends and family.

A special presentation at the walk was made to our very own Jennifer Staerk who not only organized the walk but also organized the BQ and other festivities. She was recognized by Diana Rasmussen for winning The ALS Society Volunteer of the Year Award last year. We can be so proud of her accomplishments in winning this award.

Our grandaughter Tia and her friend Brook made a presentation to the school assembly about ALS. Our little grandaugther Katie also made a special report on their garage sale efforts.

Tripwire Media was on hand to record this special event...Thanks Doug!!!

All we can say is.........thank you........thank you.........and again thank you!!!!!!!

Reynolds School Walk / Prawda MB May 18th Tuesday

Hey...another MB beautiful sunny day....beats last year's rain and sleet!!! This enthusiastic bunch of students raised $1200.00. Small school but as we said before really big hearts! Rick could not be there because of transportation issues.

I had the honour of being there and walking with the students as they went ahead to help defeat ALS!!!! I was so touched by all the hi fives, and hugs that I received by the students. I was continually asked "how is Rick doing?". I was treated like an old friend to all the students and staff. I was even led by a young student to the lunch room just to make sure I knew where to go when lunch was served. Matthew made sure I had a flower he had especially picked for me to give to Rick. Jasmine made sure I was never alone and was looked after. What more could a person ask for????

We are so touched by these kids....who said "Nowadays....these kids?????" Thank you students, staff and everyone in the Reynolds School who made this day possible!!!!!

Whitemouth School & Reynolds School you have forever touched both Rick and myself in a way you will never know with your love, compassion and support!!!!

Students you have the opportunity to change our world for the good and we really believe you will...you have already demonstrated to us both you have it in you!!!!!! God Bless all of you!!!!!

Rick and Joan here..."one more sleep till the ALS Walk in Whitemouth"

2010-05-13T19:21:00.004-05:00

We are so excited that tomorrow is the 3rd Annual ALS Walk in Whitemouth. Thanks to everyone for your support in coming out to the walk tomorrow, donations, buying raffle tickets, supporting Katie & Tia's Garage sale and for all the hard work that goes on behind the scenes to make this such a successful event.

We are honoured to have special guests this year, Uncle Keith from Calgary & Rick's sister Shirley and her husband Bill coming in from Chattham, ON to joining us this year as well as other family and friends!

If you haven't had a chance to donate yet and would like to help out you can do so on line at http://www.als.ca/events/mysite.aspx?fid=4004

Rick and Joan here..."A Broda Chair???"

2010-05-12T16:52:00.004-05:00

What is a Broda chair???? We didn't know either. Actually, it is kind of like a chaise lounge on wheels. It reclines and has an adjustable leg rest on it. The sides have adjustable pads to help hold you upright. As my upper body strength has deteriorated I find myself leaning over to the left all the time. It was getting so uncomfortable as well as taking a lot of energy to try and sit up straight. This chair solves that problem by holding me upright. We will be using this when I am inside as it is not an outdoor chair. My wheelchair is what will keep me being able to cruise outside.

It was a bitter pill to swallow as you can see from the pic I look pretty much like a complete invalid in it, especially when I combine it with the bipap mask and the feeding tube. Hey, wait a minute I am an invalid!!!!! When we got it I asked Joan to give it an extra kick for me and then we thanked God not only for the chair but for the Health Care System we enjoy and all the caring hardworking people in it that makes equipment like this one available to us.

To be honest, as the equipment continues to multiply and as I get more dependent on all of these different apparatuses to keep going it is very tempting to get depressed. Instead, I choose to approach it in a different way. We came upon this phrase on another ALS site and it really sums up the attitude that you need to take to keep fighting this disease. The new equipment is not a sign that I am getting closer to the end, it is a sign that I have new tools to continue the fight.

Rick and Joan here..."Katie and Tia's ALS 2nd Fundraising Garage Sale"

2010-05-08T19:36:00.012-05:00

Wow - Katie and Tia surpassed last year's fantastic total and raised an unbelievable $1,631.00 for ALS MB!!!!!! The success of this event was a combination of an amazing amount of hard work by Katie and Tia not to mention a few 18 hour days put in behind the scenes by their parents Jake and Val, along with Kathy & Jade, Roger and Kathy & Nick and Colleen for all the clean up, and Blair for handling all the tables. Thanks so much to all the folks who so generously donated items for the sale. A big thank you to all the generous folks who came to buy "stuff" and support the cause. None of the items in our sale have a price tag...you pay what you feel is fair. Many people stopped in today just to give a cash donation. You are all so amazing!!!!

We were overwhelmed by how many folks when they heard about the sale came and dropped off items. We are talking friends, neighbours, home care workers, coworkers of Jake and Val, handi van driver Martin and on and on!!!!!

Tia and Katie worked the sale from 7:30 am until everything was put away! Tia even bqued hotdogs! We found out the way to keep Katie posted all day...get a till!!!

Val early this morning hanging balloons, making coffee, moving tables, hanging and making signs, driving around at 7:00 am putting up signs, unpacking and setting out all the stash and much much much more!!!!

Kathy, Brian's granddaughter (don't want to misspell her name)Jan and Brian & Jade.

This year we even had sun all day!!! no snow!!!!

Rick and I spent the day visiting with family and friends.

The garage sale threatened to turn into a party when Nick a.k.a Elvis made a surprise visit. He wowed a group in the handivan who had stopped by to offer their support and he later wandered down to the care home to do a couple of songs.

Thanks again to everyone who was involved in the ALS fundraising garage sale!!!!

Check out this link to the ALS MB site for more about the Katie and Tia's ALS Fundraising Garage Sale http://www.alsmb.ca/

Rick and Joan here..."Reynolds School Kickoff"

2010-05-05T17:00:00.007-05:00

We arrived at the Reynolds School with a bunch of the students looking out the front door and eagerly awaiting in the gym to welcome us!

Once again we will not be posting any pics of the students due to safety issues.

Here is a pic of us with some of the staff. We are so absolutely amazed at how each school has its own personality! What a lovely school Reynolds School is with really attentive students. The staff and students greeted us with such warm welcomes! It was very special for us to be there as this is the area that Louise Lamaga lived and also taught from. The students walk each year in her memory. Louise lost the battle to ALS in 2007. The students are all familiar with the devestation that ALS leaves in peoples lives.

Once again after the dvd presentation we were amazed at the insightful questions that the staff and students asked us. When asking the students if they know of anyone in a wheelchair we have been so amazed at the amount of hands that go up each time. Growing up both Rick and I weren't around people in wheelchairs. These students have such an awareness of handicapped people! The kids loved Rick doing tricks in his chair! Tilting way back till nearly horizontal, and they loved the sip and puff hands free system on his chair. He even complied to the request to show them how fast his chair goes across the gym floor!

Special thanks to little Jasmine for standing watch at the door!!! Thanks Reynold School for opening your school and your hearts to us!!! Your school may be small in size but it is sure big in heart!!!!

Our handi----dandy----van driver Martin....always treats us so awesome!!! He has become a friend to both of us.

When in Hadishville we were told we are not to leave the area until we stop at the infamous spot "Sophie's Restaurant". Well!!!! we did as we were advised ...awesome...awesome...place... home cooked meals...and desserts to die for! You have to try the Heavenly Hadishville dessert!!! It is such a quaint and wonderful place. We were greeted with open arms and wonderful service. We were sent home with a bag of complimentary mini loaves of bread to enjoy. We hear they serve awesome pizza every Friday!!!! They are just a couple of minutes off the No. 1 Hwy on Hwy 11 and well worth the stop. They are open 7 days a week and to boot they are licensed! When at Sophie's do say hi to "Pat" from us and say you heard about them from Rick and Joan. Their website is http://www.sophies4food.com/.

Rick and Joan here..."On the lighter side!"

2010-05-03T15:45:00.004-05:00

We had a bit of an adventure after we finished the presentation at the Whitemouth School on Friday. We had a great time at the school and so decided to make our way a couple of blocks uptown to the Whitemouth Hotel for a late lunch. It was raining lightly but threatening to get much worse. A few hundred yards from our destination the wheel chair started to go slower and slower and slower....Yikes!!! We were almost out of power.

The possibility of me sitting in the wheelchair in the pouring rain on the middle of a sidewalk on main street while poor Joan went looking for a very long extension cord for the wheelchair charger reduced us both to fits of laughter. Our faithful wheelchair limped along and like a faithful old horse got us to our destination before it died. Joan had to push it up the door way ramp as it was too weak to get up there.

Our good friend Kirsten lent Joan her car to go and make an emergency run to get the charger. So we ate lunch, charged the wheelchair and had a few beverages before making our way home! We felt like movie stars on the way home as every kid we passed from 6-18 who had been at the rally gave us great big waves!!!! All and all a pretty successful day!

Another thing that appealed to my twisted sense of humor that made us laugh was that our next door neighbour got a different car---a great big hearse! I joked with a few folks that it is not everybody who has a terminal disease that gets to have a hearse parked across the back lane ready and waiting! lol

Anyways, if you are driving up our street and see a hearse parked up near the house don't panic! I intend to be around for awhile yet!!!

Rick and Joan here..."Thanks again Whitemouth School"

2010-05-01T09:30:00.002-05:00

Here is Rick and I speaking to the Whitemouth School staff and students.

First of all, I did not post any pics any of the students in the rally on purpose because of all kinds of school safety rules.

Our day started by scurrying around and getting Rick ready. Then it started to pour rain!

As we were walking through the rain a few blocks to the Whitemouth School for the 3rd Annual ALS Walk kickoff presentation we were both in anticipation of how it would turn out this year. The first time we met with the students in 2008 Rick was just using his cane...the kids have been on this journey with us from the start so they are very aware each year of the changes in Rick's condition.

We were greeted by many of the school staff and student body with cheery hellos etc. The ALS Society has finished their ALS Educational Dvd which includes Rick and I so we were really pleased to be able to use it for our presentation. This is the day where the students are handed out their pledge sheets.

A special thanks to Doug at Tripwire Media Group who produced this dvd. They have done a wonderful job of putting it all together!

After the dvd was shown the students burst into spontaneous applause! We were so pleased that they really embraced the content of the presentation. The nearly 300 students and staff were all gathered together in the auditorium for the presentation. After the dvd was shown the floor was opened to question and answer period. Once again to our amazement the students asked and asked and asked questions. The questions were so thoughtful and pertinent. We were amazed again at the frankness and perceptiveness that the students showed. The questions ranged from "what is the worst thing about ALS?" to "Are you afraid of dying?" and anything in between.

Joan and I have always been real open especially at the schools so that no question is out of bounds! We really feel it is important that we get out there and be transparent about the challenges of living with ALS.

Special thanks to Jennifer Staerk who coordinated the rally, principal Jeff Whitford for opening the school to us, the teachers, and of course all the students of Whitemouth School!

We are looking forward to meeting the students next week on the 5th of May at Reynolds School!

We can't wait for the Whitemouth School Walk Friday May 14th......

Also take note...ALS commercial starts airing on May 10th on CTV Winnipeg.

Joan here..."We have todays!"

2010-04-27T08:21:00.006-05:00

I had a wonderful time in North Carolina! Talk about a beautiful area I was in Wow!!! Streets all lined with big beautiful trees and azalea bushes in full bloom everywhere one looked! Not a weed in the area!

I went to the largest flea market I have ever been to. I couldn't even buy anything there as there was just too much "stuff" to look at!!! Sheila calls it "eye candy". My hosts were wonderful!!! Rick's folks took absolutely wonderful care of him along with the home care workers and Jake and Val. Rick says that he missed me so very very much (he has to say that) LOL!!!

We have been going out for walks and unfortunately he is having a very difficult time learning how to steer with his sip and puff. Yesterday, I ended up steering his chair for him as we walked. The controls are all backwards now...hard to teach an old dog new tricks! Just about ran over my foot a few times but I managed. I tried to get him on the lift in the van for the first time since last fall so we could go for a little ride. That never materialized as Rick just got too overwhelmed with it all as he has lost control of steering the wheelchair accurately now. Because his breathing is so bad anything that is stressful just adds to the difficulty in his breathing. We decided we would wait till he is more rested and another day to make another attempt at it.

Because he no longer can use his hands or legs he is feeling extremely vulnerable and it makes it very hard to do anything much outside of our suite. We are fortunate that there is a handi transit van that is available locally that we will have to use from time to time. We do have some events that Rick and I are involved in. We have tried to stay involved as much as possible. Making our own little dent in the world.

Rick and I will be making a presentation at the Whitemouth School ALS Walk kickoff this Friday afternoon and then at Reynolds School the following week. We are in the process of setting a date to meet the students in Beausejour School also. Our ALS Whitemouth Walk is on Friday, May 14th and leaves from the Whitemouth School. Reg starts at 9:30 am and leaves between 10:30-11:00am. Everyone is welcome!

Katie and Tia's 2nd Anual ALS Fundraising Garage Sale is next Saturday, May 8th. That should be a great time. It will be held on the yard from 9:00 to 4:00 pm. If you have anything you want to donate to this sale please do let us know email rfewster@mts.net. Everyone is welcome to this as well! We will be selling hotdogs, coffee, chili and I am sure you will see Katie running around trying to sell some lemonade! To her you can't have a garage sale without lemonade!!!!

Jake will be hooking up Rick's sip and puff for his bed soon as he can no longer use the bed controls, tv controls as well as hooking up the bipap unit for the wheelchair. I am his remote control for bed and tv right now! You could say Rick really knows how to push my buttons! When you phone it takes us forever to answer as I have to run and get the headset to put on Rick so he can speak. Usually he has his bipap on so then I maneuver the headset over the bipap...so nothing happens too fast!!!

Some of the things that really have brought some tears to my eyes is while I was washing the car and thought about the fact that he will never be able to sit in it or drive it again or us go for a drive in it. We always loved going for long drives together! I will never feel his arms around me. He can't hug me anymore...that is a big one! He has to call me over and tell me he wants to kiss me. He can no longer just do that on his own! He can never write me a note with his own handwriting...the cards I get are now signed by others! Last year he wrote me pages and pages so I would always have them from him!

In all that I am so happy that we have each other. He tells me over and over that he can't believe how good I am to him as a wife and how good I have taken care of him! I am so happy that he is so appreciative of me and that I bring him joy, care and love in his life! I just never want to look back down the road and feel I didn't do enough for him....that will probably happen anyway but at least I am trying to minimize that as much as possible.

We are so very happy that this spring has come with such wonderful weather and we have had so many birds fluttering around the feeder outside our window. Anyone knowing Rick knows he loves watching the birds! He takes after his mom for that. Amazing how the little things continue to be a source of one's daily joy! It is no longer the years but the days that we rejoice in!

We have todays for now and for that we are so grateful!!!

Joan here..."Kisses, flowers and North Carolina!"

2010-04-17T19:27:00.003-05:00

Talk about the right timing at the right time!!!! hmmmm...a thread of something here.....
I really needed an away time....not from Rick but from ALS! I know...you can run but you can't hide....I just needed too see something other than wheelchairs, lifts, suction machines and etc....

Rick and I talked about it...he is steadily going downhill with his breathing and needing more and more care on a day to day basis. If I was to just go away for a bit it would have to be now....but talk about being torn in your heart!!! It is like leaving your baby the very first time...I felt like I was going to abandon him or something...he is such a wonderful man and so supportive of me...it just continues to amaze me...in saying that just for the record..he is not perfect..but pretty close!!!

I just knew I needed to get away as I said not from him...just my life for a bit. I was given an offer I couldn't refuse....thanks Dave, She and Amy....I am in North Carolina!!! Everything just fit....Rick's folks are taking care of Rick, homecare, and with Jake and Val as our back up! It couldn't get better than that for me in order for me to take this trip.

I was in such a torn spot in my heart....from start to right now..I feel like angels have been with me....amazing stories....luv what I saw of Chicago and talk about God's country in North Carolina...wow!!!! I have the most incredible hosts you can ever imagine.....I was greeted with fresh flowers from a little girl Amy with the biggest smile ever and her amazing mother She!!!! This evening little Amy kept blowing me these big kisses!!!

Thanks to my family for the early ride to the airport, the spending money, the offer to pick me up at the airport when I return. I had people from custom officers show me compassion (and yes, I started crying as they spoke what I took as words from heaven to me), stewardesses, and even my seating buddy Mohammed on United Airlines really touch my heart!!!! Mohammed told me about him, his beautiful family and that he was going to pray for us!!! Wow!!!! Thank you all for being you today!!!!

Thank you Rick for encouraging me with that unselfish heart of yours in me coming here!!!! It is my first official trip without him.........need I say more???

Joan here..."Wheelchair on the go again!!!"

2010-04-14T21:34:00.004-05:00

We were so excited today, Rick got his wheelchair back, with all the new add ons!!!!!

Doesn't seem like much till you are the one who could use it. A tray was added on to the back of the wheelchair so Rick's bipap machine could rest there...and yes...they tweaked up the speed some so we can actually walk faster than a turtle! Thanks so much all you people at the HSC Rehab Dept. for all your dedication and help and expertise!!!!!!!

Also, Rick now has the environmental control unit that allows him to actually raise his bed up and down, turn on the tv, and call for help...because he no longer can use his hands....this unit allows him to be in somewhat in control of his life!!!! God Bless all of you for your dedication and hard work!!! Thanks to Martin for his care in getting the chair to and from the HSC!!!!

Once the chair came back, (Rick was in bed for two days while it was gone), we took the chair for a spin...Rick was so excited as he got to go 60% of the speed instead of the 30%!!!! The beautiful weather was an added bonus!!!!!

We were so pleased today when we were asked to be a part of an upcoming event...and because Rick and I can't be physically present...we were asked to pray for it afar!!!! But we are still doing!!!!

Life is really simple these days that is for sure...we are just so happy to get him through the day!!!! Imagine yourself not being able to move...not an inch once you are placed in a sitting position or a laying position until someone comes and moves you. A real treat for Rick is if someone will just come and straighten his fingers on his hand or toes on his feet. When you are so disabled you just need a lot of compassion and people who offer to do those things for you ....anything else is dung!!!

If a person is hungry feed him....if a person needs their toes bent or fingers bent do it!!!! Hey,,,, that maybe the way Jesus would have done it!!!! :)
Anyways, life is pretty simple but complicated when it comes to just surviving the day....I just can't imagine how in the world my husband survives and continues each day without giving up!!! He has such a positive attitude!!!! God Bless him!!!!!!!!!

Rick and Joan here..."A little update"

2010-04-11T21:07:00.002-05:00

My breathing has once again deteriorated this past week. I have been struggling to get my breath more and more. I am using the bipap not only all night long but every couple of hours throughout the day. I go onto it to catch my breath. It is a very strange feeling trying to breath and inhale and yet not be able to draw the air in. My lungs work fine...the problem is as the muscles die it gets harder and harder to pull the air in...my body is using muscles from all kinds of places to try and do the job!

Tomorrow, my chair is going into Wpg. for a couple of days once again. This means I am in bed until it comes back. This time my chair is going to have a mounting platform put onto it and along with a power converter so that my bipap machine will be able to travel with me. Also going to see if I can get my top end speed adjusted up so that when Joan and I go for walks...Joan doesn't leave me in the dust!!! lol

For those of you on the ALS forum I have not been corresponding as I have yet to get my head mouse set up. We have been just busy taking care of my other day to day issues. I hope to be up and at it soon so don't give up on me! :)

I have had a lot of changes in my body once again in the last couple of weeks and so I am needing more care every day!

I had an interesting moment the other day as I laid here helpless...I felt a bug crawling across my hand and it was dark so I couldn't see how big it was or what it was. Based on it's footprints across my hand I figured it was headed up towards my face. I gave a shout and Joan came to my rescue and started to look for the creature. Took awhile but it was found!!!! It was a pretty scary feeling as you imagine it walking up your nose or into your ear and not being able to stop it. Your imagination goes wild! It is a little bit like hearing the grass rustle just outside of your tent at night and you never think it is a mouse...you always think it is a bear! :)

I can see that I will have to develop a whole new level of mental toughness to get through this next bug season. In all honesty it was quite frightening to realize the level of my new helplessness. Last summer I could still move my arms and swat a skitter or smack a spider this year I feel a bit like a potential buffet table for the critters!

Joan and I spent some time in the sun on the deck this afternoon. I sat and sipped a cold one through my straw while offering Joan constructive advice on how to unstring all the Christmas lights on the back deck. I glanced up into the sky and saw the first turkey vulture of the year floating effortlessly across the sky. I kidded Joan that she better not leave me unattended too long on the deck this summer or I may make a meal for somebody! lol

Rick and Joan here..."Happy Easter"

2010-04-03T08:53:00.006-05:00

We are enjoying our quiet Easter weekend. Good friends Brian and Jan will be here with us today!

Being Easter time...I was thinking this morning about the song "because HE lives...we live and we can face tomorrow". Our faith in Jesus allows us to live each day to the fullest that we can.

We have been told by so many that we are so strong! Both Rick and I have said before and now will say it again...it is NOT our strength that has carried us through this far on this journey but it is the daily strength we receive from the hand of God! Each day we receive fresh manna (food that came down from heaven daily to sustain the Israelites as they wandered through the desert) from heaven to sustain us and keep us from totally being overwhelmed or freaking out!

Every day we face new challenges in Rick's care. We believe and give total credit to all the people who have been praying for us. We have experienced wisdom for the moment, the care of wonderful and committed people, experienced doors opening for getting Rick's much needed equipment as we needed it, genuine words of encouragement from our newly found friends from the blog to both of us, meals, wheelchair delivered and picked up from HSC (which is a feat in itself), computer help, cards, books, phone calls, family and friends who have shared their support and love for both of us.

It is so amazing when you are emotionally and physically down how even a few kind words can help to restore and lift up your spirits for the day!

We have had strangers send over flowers, rec'd emails from all over the world, and our own children who have opened their hearts and home to us. Rick has even had strangers stop him on the street to offer words of encouragement. We take all those special moments and know they truly come from the hand of God!

A person really never knows how they would cope with a difficult challenge until they are the one walking through it. In our case dropped into it! The words...His mercies are new every morning...I will fear no evil, for YOU are with me...all take on a life of their own! Yes, Jesus is alive and is living through His words and through the lives of others!

Have a Happy Easter!

Rick and Joan here..."A good friend has passed'

2010-03-31T23:58:00.004-05:00

We were saddened to hear tonight that our dear friend Ken Samson passed away today! We got to know Ken through the ALS Society. He has been living at the Brummit Feasby Hospice House in Winnipeg for some time now. Although Ken has not been able to speak since we got to know him his indomitable spirit, sense of humour and bravery shone threw.

This is a picture of Ken that catches that sense of courage, bravery and depth of spirit!

Our thoughts and prayers are with his wife Alice and family at this time! We will miss you Ken and you can now say "I am NOT living with ALS!".

Joan here..."My current reality"

2010-03-29T21:26:00.004-05:00

As I tucked Rick into bed tonight my mind floated back to this picture I came across today of him and I. Floods of memories came back! We are still so in love. If someone would have told me 14 years ago that I would be caring for him full time 24/7 in this capacity I would have never believed I could ever even manage it. But here we are, 2 years later after diagnosis!....It amazes us even to this day how we love being together and how we can chit chat non stop even through all of this! We live in a bubble...a bubble of God's Grace!!!

Our night routine kinda goes like this. Joan, can you please move my left elbow just an inch or two to the left? Then can you just straighten my toes out one more time. Would you please straighten out the fingers on my right hand for me sweetheart? The list goes on and on. His toes and hands are curling up tight as the muscles die. He is totally unable to do anything at all for himself and is totally dependant on the mercy of whoever is near to him. He is totally reliant on the kindness, sensitivity, and love of others for his care. I can't even imagine how I would be if I were in his shoes.

I think what amazes me the most about my husband is his kindness and gentleness...he does not blame God in any way for any of this so he is not bitter or angry. I see the weakness and vulnerability first hand each day as he eagerly awaits for me, as I drag myself through the room , to bring him his first cup of coffee and urinal in the morning. He can no longer dial a phone or answer a phone call, type or write any longer on his own. We are just so thankful to God that he has his speech (his voice is changing daily) and his great big forgiving heart!

I spend a lot of my time crying and crying while looking at him as he sleeps and desperately tries to breath through his bipap machine. His breathing has once again gone down hill in the last couple of weeks. If only...if only...this would be a really bad dream and not our reality!

Rick and Joan here..."New ALS MB website"

2010-03-29T12:40:00.008-05:00

Check out the new ALSMB website at http://www.alsmb.ca/!

Congratulations to the hard working teams at ALS MB and Tripwire Media for a job well done!!!

Rick here..."Shower humour!"

2010-03-24T17:44:00.003-05:00

Okay...this broke me up!

For those of you who may not know Joan well she has a wild sense of humour! We spend a lot of our time laughing together.

She was showering me a couple of days ago which is quite a feat in itself as I am pretty much a quad at this point. Half way through the shower Joan placed the head of the hand held shower in my lap where I usually steady it while she shampoos me. My arms have deteriated to the point where I only have a bit of movement in my thumb. The shower head started to slip away from me and spray Joan. She immediately quips "Come on Rick, you have a thumb, use it!" We both broke out laughing until we almost cried. A merry heart does good like a medicine.

Moral of the story: So, just remember next time when you think you have nothing left....If you only have a thumb...use it! LOL

Rick here..."I am on the road again!"

2010-03-24T16:33:00.004-05:00

The snow is gone (mostly) and I am finally able to get back outside again! It has been a looooooooooong winter!

Joan and I have been out for a few runs and I am learning the ins and outs of my sip and puff steering system. It is not as accurate as the old hand control but beats the "h" out of not driving at all!

I have only had one mishap...nearly hit the ditch...there is a setting where I sip three times to get the chair up to top speed then I steer it left or right by either softly sipping or softly puffing depending on which way you want to turn. Note to self---when panicking remember to sip softly not hard as that only make you go faster! Got to try out my emergency stop button and pleased to report it works great!

Please don't let the folks at HSC rehab hear about this one or they may not dial up my speed on my next visit. :) They currently have my top speed set on a slower learning mode-probably to save my life- The only thing is now Joan can walk faster than I can keep up with and is bored with waiting for me to catch up! When my top speed is restored I can leave her in the dust. lol!

Also a note to all my Whitemouth friends...am no longer able to return the friendly waves that I get as the darn arms don't lift anymore! Don't want you to think I am all stuck up or anything!
I can still nod and smile but you will have to slow down to catch it!