I see that I had put away my notes during Karen's 8-9th year. I had to stop writing: it was all too much. I hated the thought of putting Karen through a painful operation when she had never been in pain. I could not decide what to do. And since she left us, I have not felt up to opening my notebooks. I wanted to, but knew it would be too painful, it would bring back too many memories. The reason why I had always wanted to keep a little history was for our friends and family who might like to read Karen's short life story. It would be a pleasure to me to pass it on . Some parts of the book could go to doctors in case it could be of any use to them or to parents with a child like Karen. Even today when I see a child in a wheel chair, I think too of the parents and what they are going through. Reading this would maybe help them. Life is so precious - enjoy everything as if each day were your last. The pain was too strong for a long time. But now I can do it. With the help of a very good friend of mine, I finally opened up my note-books and re-read them. We even watched the video of Karen - of her birthdays and of every stage - the stroller, the walker- and the big step to the wheelchair - and though it was not easy when I saw how each year she was deteriorating, it felt good to be able to watch it again. I was even able to laugh and to enjoy watching it. It reminded me of Karen alive...
We saw how she enjoyed all she did: she loved music; she liked listening to the New Kids on the Block, a musical group. She loved watching TV. I would give her the remote and she enjoyed switching the channels. Every year for Christmas,I would give her a Barbie. She enjoyed playing with her dolls. She could spend hours dressing and undressing them. She would talk to them and sing and laugh. Another one of her favorite things was to look through the Wish Book, day after day, and she would tell me which gift she really wanted for Christmas. Even now that she is gone, whenever I see the Xmas Wish Book, I go through it and look for something Karen would have liked. She loved the color red, but she was afraid of flowers. Once when we were at the IWK on our way to the cafeteria for lunch, with my aunt pushing the stroller, we stopped for a second to see where we were going to sit and Karen started screaming. I was not sure why until it dawned on me that we had stopped right in front of a big flower pot. We were embarrassed; people were looking at us and wondering what was wrong with her. As soon as we moved the stroller away, she was fine. She hated the oxygen tent and she would sometimes get mad at James because he would pick on her. But over all she was a happy child, she loved people she loved to laugh. She always had a big smile on her face - and to see her smile was good for us too. I like to smile myself as often as I can. Sometimes when I do, I think of her.....
.... So now I feel it is time to fill in those last years.
For two years, Karen went to school in Cheticamp along with two other children who had M.D. They all took the school bus and for two years I was hired by the School Board to hop on the bus in the morning and afternoon and help those kids on and off the bus with a special wheel chair lift. I became great friends with the bus driver and to this day I see him almost daily in my work life. I remember also that we often went to Halifax to the IWK for more tests and for them to find ways to make Karen as comfy as possible. I noticed that during the last year she often had a cold. She was getting weaker all the time, her breathing was getting worse and she could not cough to get all the mucus out, so I had to massage her back to loosen the mucus. She loved to have me pat her back. We also had a hospital bed put in the dining room so she could be with us all day and watch me do my house work around the kitchen and I could keep an eye on her at the same time.
There were always people coming in to visit her and for a cup of tea. There were a few ladies who came to do some schooling at the house a few hours a day until she got too weak for that. Most of those people are still around and I see them once in a while and I'll always keep a special place in my heart for them and for all the people who had anything to do with Karen. Thank you all. The person whom I really have to give a special mention to and who was here almost all the time was my mother. I needed her and she was there. Our family and friends were great and always will be. I love you all. A time came when I began to see that we would have to let her go. I wondered how I was going to cope with this. So - I looked to my spiritual side and took a part in a religious group session where once a week we would meet and study the parables of the Bible. Doing this helped me a lot and prepared me for what was coming. I also followed this up by going twice a year to sessions with a psychotherapist, a wonderful man who would talk about everyday life. 20 years later I still go to these sessions. They helped me to accept what I was going to have to go through in the months to come. This was my way of dealing with things.
This brings me to the last few months of Karen's life. They were very hard, day by day. She was still in the dining room where she enjoyed having visitors and watching us and James and her special cat which was always beside her day and night. There were more colds so bad she had to stay in hospital a while so they could put her in the oxygen tent which she didn't like at all. I stayed with her pretty much all the time. And every time she came home, she was weaker and weaker. There were decisions, decision after decision that were not easy to make. The one about the rod in her spine was not easy. We decided not to go along with it, because Karen had never had much pain and I could not bear the thought of her suffering. And the doctors said that she might not make it or might have to stay on oxygen all the time afterwards. So we decided to keep her with us as long as we could, pain free.
Then three or four months before her passing, we had to make another decision. The doctors and nurses asked us if they should try, when the time came, to revive her. We said no. But I had three wishes: I wanted to be with her, I wanted her not to suffer, and I did not want it to happen at home. In the third week of September 1992, Karen was very sick. My Mom had been staying with us now for a while. I am so thankful that she was beside me. Thank you Mom. During the last week, Karen was sick again with a cold and was getting very weak. We didn't get much sleep that last week. On September 22nd, very early in the morning my husband got up as usual to go to work. He came into the room and asked how she was and I said I thought she was ok for today. He hesitated a bit about going to work, but went anyway, saying if something went wrong then we should go and get him.
I said "I'm fine, mom is here with me and James." So at 6 a.m. Linus said good-bye to Karen for the last time. Only 40 minutes after he'd gone, Karen got very weak. Mom looked at me and said "the time has come to take her to the hospital." So I called my sister-in-law to come and pick us up and we drove to the hospital while Mom stayed with James. When we got to the hospital I asked for a private room. I had told them earlier that I would want it when the time came and that I didn't want visitors or doctors or nurses to come in - just to let us alone in peace. I would be ok; my sister-in-law, who was a nurse herself, was all I needed. I took Karen to a room, closed the door and we laid her on the bed. She was getting weaker by the moment. I cannot explain in any form or words how I felt when she took her last breath. But thank God I got all my wishes: I was with her, she had no pain but went out like a candle, and it did not happen at home. We stayed there for a few minutes. Just looking at her. We could see how peaceful she was. A few minutes passed then my sister-in-law went out of the room and told the other nurses and the doctor that they could come in now. Karen was going to be an angel who would watch over us from now on. Meanwhile my husband's cousin had gone to fetch Linus at work , but he was not able to make it back in time. No-one had a cell phone at the time. We came home empty-handed and with broken hearts. By the time we got home there were family and friends already in the house. Linus came home a little later than us. He said he had had feeling when he went to work that morning that he should have stayed at home. Mom and James were very sad to see me come home alone.
The next few days were very hard for me. There was always someone watching over me, following me everywhere I went in the house. I had a hard time finding any peace and quiet. People came from all over. Remember that in her short life, Karen had touched a lot of people. So for a full week it was very hectic. It was so hard to fall asleep at night - I was so tired. On the other hand it was nice to have these people around me. The funeral went well. The only thing missing was that the priest whom Karen loved so much, was not there. He was away on a convention in Ottawa at the time, so we had another priest saying mass. It did not have the same meaning for me, but we had no choice in the matter. When it was all over Mom announced to me that she was going home. I looked at her and said "but you can't go home " and she said "why not" And I said: "But I have to go down town tomorrow" and she asked "So what's stopping you from going" What indeed. I let Mom go home, she needed some rest too, and I had to start to learn a new way of living. I had to learn all over again that I could go where I wanted to when I wanted to and that I could take James with me. One thing that really struck me was the first time that I left to go somewhere; with Linus at work and James with me, I had to lock the door on an empty house. It was very hard to do. Then when I came home again, I had to find the key to get into the house. It took me a full year to get used to being able to take all the time I liked to do my housework, or to take a long shower or bath. All those little things I had had to hurry through before. James' way of dealing with all this was to take Karen's room for a while. Maybe he felt closer to her there. After a few years he went back to his own room. Linus dealt with it by not talking about it too much.
I know it was very hard for him too - but we all dealt with it our own way. Even the cat - he just left the house a week after and never came back. September 21st was Linus' birthday. It was a very sad day for him and it took a long time for us to be able to celebrate his birthday. There were too many memories. My way of dealing with the anniversary of our loss is to get up very early in the morning. I flashback to that dreadful day, and I relive the experience all over again. Then I get into my car and just drive away for the day, all by myself because I would not be good company to anyone else - nor even to myself. When I come back at the end of the day, I'm ok and can go on as normal. Christmas is another difficult day. Karen had a tree in her room, which we decorated for every holiday throughout the year. For Christmas, she had all kinds of small ornaments that friends gave her, some of which were hand made. So ever since Karen's death, I decorate our Christmas tree with all of her ornaments. I don't need anything else. All my good memories are hanging on that tree.
But that first Christmas was hard. My Mom had come to spend it with us. On Christmas Eve, Linus went to mass as usual while Mom and James and I were kept busy wrapping a few last-minute gifts and preparing the traditional acadian meat pie for lunch after mass. After we ate, we let James open one gift and then we were off to bed. I didn't sleep much that night, wondering how I was going to face it all without Karen. The next morning, as you can imagine, James was up early and waiting for me to get up. I just wanted to stay in bed and go back to sleep, but my Mom came into my room and said "Gisele, you have to get up, you have no choice, you have to do this for James. I know how you feel but we'll get through this together." So I said: "Ok, give me a moment and I'll be there." James was so happy to see me in the living room! We watched our little boy open all his gifts and he was so happy. Although Christmas was never the same, he kept me going that first year, and has done so all these years since. He is now 26, and has always been at home with us for Christmas. Thank you James, it means a lot to us. Thank you also for your kindness towards Karen and for all the times that you have helped me. You made it easier for me to keep going. You are my rock. In my earlier diary I wrote that we had put our name in for another adoption but we never got one. We also had the opportunity to care for a few foster children which was ok but it was too hard to give them back so we decided not to do it any more. I've always wondered which is worse - losing a child suddenly - or the way we lost Karen, knowing in advance that the tragedy was going to come sooner or later. I had lots of time to think of it and not say a word, but it was always at the back of my mind: when, when, when? Or when it just happens. In the last 18 years I have seen it happen a few times, and felt so much for those people!
After a few weeks of not having Karen around, James went back to school and Linus went back to work. I cleared out Karen's room with the help of a few friends. Karen had 160 plush toys and I gave one to each of the family and friends who wanted a souvenir of her. When the room was pretty much empty, James took it over. Then I was left with the wheel chair that had to go back to the IWK. This was a trip I did on my own. I loaded the chair in the van and just went. Before I left the hospital I stopped at the gift shop and bought another plush toy for one last time. It was a black teddy bear with a red bow and he is beside me right now and watching me write. I came home empty handed and wondered what I was going to do. My life seemed so empty: there was that big piece missing. I had to take it one day at a time and find some kind of hobby to keep me occupied; so I took up my favorite pastime, hooking rag rugs. While I make rugs, I always have Karen in my mind. One day someone told me "Gisele, you should sign your work." So that was when the letter K came in. On every piece I do - whether it is a rug or a papier mache mask or a painting, I put the letter K as my signature in memory of Karen. Everyone who has a rug of mine also has a little piece of her. It's my way to remember her, and I feel that she is with me while I make them.
I had never worked all the time I had Karen at home, but two years after she died, I decided that work would be a good change for me. James was 10 by then. So I have been working ever since. I started as a cook at a restaurant in Cheticamp, then worked as a tour guide at the fishery museum in Cheticamp. From there I came to Grand Etang and now work as a tour guide again. I would like to share another special story. Karen loved music, so once in a while I would take out my guitar and play for her - and sing her a song. She had a little guitar that she enjoyed playing at the same time as me. After her death it was hard for me to take out my guitar and play - so one day I decided to sell it, because I said I would never feel like playing again. And, for 13 years, I didn't play. I guess it is five years ago that I went to a few music sessions that we have on Tuesday nights in Cheticamp to listen to them play. I remember that I had met a lady from Toronto when I was working at the fishery museum and she had asked me where she could go to listen to some music that night. So I sent her to L'AMAC (l'Association musicale des Acadiens de Cheticamp). That evening I went too, and when she came in she sat beside me. I asked her what had brought her to this part of the world and she said she had been in Wolfville for classical guitar lessons. I said "oh, you play the guitar." And I told her how I used to play and why I had quit and why I had sold my guitar. And I told her that since I had started coming here on Tuesdays, I was thinking I might buy another guitar and start again. That night I took this lady to a bar to listen to some fiddle music. The next day she came to my work place and brought her guitar in. She wanted to hear me play the guitar, so she convinced me to play a piece or two with her. Then she bought one of my rag rugs and took my address and said that she would drop me a line when she got home - and then she set off to do the Cabot Trail.
Well! To my surprise there was not only a line, but there was a huge parcel at the post-office! That morning on the way to work I dropped in and the lady there said "Gisele, did you order a guitar" And I said: "What! - A guitar? No I did not." And she said: "well, you have a guitar here." The lady from Toronto had sent me a guitar with a little note which read: "The next time I visit Cheticamp and go to the music evening, you'd better be sitting in that circle of musicians with your guitar." We have become great friends. I never pick up that guitar without thinking of my special little angel whom we all love and miss so dearly. I hope that all of you who read this book will enjoy it as much as I have enjoyed putting all this down on paper - even if it took a little time to start! I know Karen is watching over us. I loved her very much - we all did. We will always remember her as our little Karen who enjoyed life the best way she could. When you looked at her you would see those big blue - sometimes green - eyes and then Karen always gave you a big smile.
Love you always,
Gisele, Linus and James
I see you as clearly today
As if you had never left me.
In the evening your beautiful blue eyes
Shine like the moon in the night.
In the daytime I see your unforgettable smile
Among the children who are still here.
But I would give everything
Just to have you beside me
To see your little hands again
Drawing and coloring,
To have you playing little tricks on us
and once more hear you singing yourself to sleep.
Yesterday we were talking together .
We will never forget you.
That is true.
• Discussion: Have Your Say! - Add your comment or discuss this article on our FaceBook Page.
|1 : Last of the Seven Summits - Making History for Hemophilia! : Save One Life, Inc..|
|2 : Amputee Model Breaking Barriers in Fashion and Shattering Stigma of Disability : Global Disability Inclusion.|
|3 : Steven Foelsch - A Busy Advocate for People with Disabilities : Starkloff Disability Institute in St. Louis.|
|4 : Diabetic NASCAR Driver Wins at Daytona International Speedway : Eli Lilly and Company.|
|5 : Two-Time Cancer Survivor Heads to South Pole : Milestones Communications.|
|From our Motivational - Inspirational section - Full List (38 Items)|
Submit disability news, coming events, as well as assistive technology product news and reviews.
Loan Information for low income singles, families, seniors and disabled. Includes home, vehicle and personal loans.
Famous People with Disabilities - Well known people with disabilities and conditions who contributed to society.
|1 : Eating at Night, Sleeping By Day Alters Key Blood Proteins|
|2 : Interior Car Temperature Can Become Life-threatening for Children in an Hour|
|3 : 20 New Episodes of Letters to Lynette with Dr. Lynette Louise to Air on The Autism Channel in 2018|
|4 : Turnstone Center Designated as Official Paralympic Training Site by US Olympic Committee|
|5 : Help Your Child in School by Adding Language to The Math|
|6 : 50% of Retirees Saw Little or No COLA Increase in Net 2018 Social Security Benefits|
|7 : Turnstone Endeavor Games Concludes with National Records Broken|
|8 : Spinning in Circles and Learning From Myself by Tsara Shelton|