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

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"

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".

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!"

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"

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"

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.."

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"

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?"

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"

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"

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"

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"

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!"

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"

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"

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"

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"

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"

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"

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"

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"

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!