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

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"

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"

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"

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"

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"

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"

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.