Karen: Tribute to Life of Girl with Muscular Dystrophy

Introduction

A Tribute to the Life of Karen...

Main Item

Karen was born on March 8th, 1981. After four or five months of growth we noticed that she was kind of slow and were told that she had Muscular Dystrophy.

My family doctor asked me to write down on paper all the different things that she was doing as she grew up. So I did the best I could and these are the monthly reports you'll be reading. I hope they will be of help to anyone with a child like Karen.

The First Year of Karen's Life

Karen was born on March 8th, 1981 in the St.Rita's Hospital in Sydney at 11.30 p.m. She weighed 9 and a half pounds and was 21 and a third inches in length. She was born floppy, with a congenital dislocated hip. She had to wear triple diapers for 2 months. After that her hip was alright.

Her 1st and 2nd months

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Karen seemed a very normal baby to me, except for being born floppy, so I didn't worry too much at first. She seemed to be very active and she was sleeping well. She was breast fed and was a very good baby. She only cried when she was hungry. She would smile at me and her father or anyone else, which was normal for a child that age. She did get a rash on her face and all over her body but it was nothing serious and was gone in a couple of days.

Her 3rd month

In her third month I still couldn't see that she was sick. She kept on smiling and doing what any normal child would do. Except that I knew that when she was lying on her belly she should have been able to lift her head up, but she didn't. That's when I really started to notice that something could be wrong. But I didn't worry too much and let it go 'til she was 4 months.

Her 4th month

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I weaned Karen and put her on similac. I had breast-fed her for 3 months and really enjoyed it. It was a good experience. She went along pretty good on both milks and the change didn't make any difference to her. She had 2 teeth in her 4th month and wasn't cranky at all: I only noticed them when they had come through.

At this time, however, I began to be really worried because I knew that Karen should have been doing more than she was, such as lifting her head up when she was lying on her belly and trying to roll over. She was going on her 5th month when I went to see my family doctor and told him I thought something was wrong because one of my friends had a baby a month younger than Karen who was doing a lot more than she was.

Her 5th month

She had 2 more teeth without trouble. I went to see our family doctor and then brought Karen in to see him and we went to the Sacred Heart Hospital in Cheticamp so he could run some tests on her. He told me then that he thought there was some problem with her muscles. He got us an appointment with a specialist in her 6th month.

Her 6th month

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She had 2 more teeth without being cranky. I took her to see a specialist at the Sacred Heart Hospital in Cheticamp. He told me that she definitely had something wrong with her muscles and that we were going to have to do something about it. He got us an appointment at the Izaac Walton Killam Hospital in Halifax, one of the best known hospitals for children. We had to wait another month before we could go, which meant waiting until her 8th month.

Her 7th month

She had 1 more tooth without being cranky. During her 4th, 5th, 6th and 7th months there wasn't much change: she still couldn't lift her head, or hold her head up or lift her head when lying on her stomach. But at the end of her 7th month she started to hold her head up a little better and she could hold a toy in one hand and then change it to the other hand. I could see that she was improving a little.

Her 8th month

We went to the IWK Childrens' Hospital in Halifax. Her doctor was Doctor Campfield. They did all kinds of tests and also took a little piece of muscle from the front of her left leg. When they had the results they told me that I must call my husband and have him come to join us, so we could be together to hear what they had to tell us. Linus came and they told us that Karen had a very rare disease. It was in her muscles, so they put her in the Muscular Dystrophy category. Later he told us it was called Congenital M.D. The doctor told us she was the only one he'd seen with that disease except for one other, whom I happened to know, who was very similar to Karen. They told me to exercise her every day and showed me what to do. There is no medication for that disease and they couldn't tell me what to expect for Karen in the future because they didn't know themselves.

That day, if I'd had the choice, I would have decided not to go home at all. I would have taken Karen and just driven away not knowing where I was going - just kept on driving. I absolutely could not face everything that was waiting for me back home. I was dreading having to tell the family and friends about Karen and worried about how I would do so. I thought of the endless explanations that I would have to repeat over and over, for ever. So it was a good thing that my husband was there. He drove us home. It was rough. I told my Mom when we arrived and she told the family. Then I phoned one of my sisters-in-law and told her, and asked her to tell her side of the family and told her I would not be up to repeating it all to everyone. I knew they would understand.

Her 9th month

In her 9th month, Karen had one more tooth. I went to see my family doctor and he told us what he thought. He told us to keep on working with Karen, to go on with her exercises and try to get her to do things that other babies would do on their own. Karen started to push on her legs and play more with her hand and saying 'dada' and 'baba' and various kinds of sounds. She was trying very hard.

Her 10th month

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Karen rolled from her back to her belly and still does if she is undressed. She can't when she is dressed. She laughs with everybody she knows, but with a stranger she may laugh or she may cry. By this time she can stay in a sitting position for 20 to 23 seconds all by herself. But I don't think she feels very sure of herself. She holds her head up a lot better which to me is a big improvement and a great encouragement to go on doing her exercises all I can. I changed her similac to pasteurized milk which made no difference to her. That was nice because babies sometimes don't like a change of milk. Karen didn't mind at all.

Her 11th month

In her 11th month, she can stay in a sitting position for a minute or more and is holding her head up a lot better. She changes her toy from one hand to the other and I can see that she is really playing with it by herself. She still says "ba-ba" and "da-da" and now she is starting to say "ma-ma". Oh boy it sure sounds good to hear after 3 to 4 months of hearing "ba-ba" and "da-da"! She is very much more active and knows she can try to do things by herself.

Her 12th month

In her 12th month, she is really getting better and better. Karen has a lot more confidence in herself and will stay in a sitting position for 2 minutes and now will try to lift one hand, but sometimes get unbalanced and fall down. She says "maman" every day now and "ba-ba" and "da-da" and all kinds of sounds are coming out naturally. She's getting scared of strangers and also of a pillow that I have on the sofa so I had to hide it. She is very much more awake and active and she notices everything so that is a good sign. She seems to be a very happy baby.

Overview of Karen's first year

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Karen was a good baby right from when she was brought home. She was never cranky. She would cry if she was hungry or had a pain or was scared of someone. But generally she was a happy baby. When you put her on the floor or a chair or on your lap, she would just stay and look around and babble and wouldn't cry, so I had to check on her to see if she was hungry. She always slept good. Until her 4th month Karen did not have any problems, but after that when I started to give her baby food, she began having problems with her bowel movements. When she was changed onto the pasteurized milk in her tenth month, it got worse and when she started eating the same food as we did it got really bad. I called our children's nurse who came and gave her some suppositories that did her good. Then our doctor gave her some chronolac and suppositories and now she is getting along well. Karen doesn't like any kind of juice and won't drink it. She drinks water. She drinks pretty well from a glass. The only baby food she used to eat was bananas and pears and peaches and plain custard. Now she eats like us and I'm not buying any baby food. In the morning she eats a slice of toast by herself. I mean I put her a little piece in her hand and she puts it into her mouth. Then she eats dinner and supper and has 3 arrow-root biscuits before going to bed for the night. She has never been a big eater but eats enough as she doesn't do enough to need what another child would eat. Nowadays she does a lot more. She began to drink orange juice in her 10th month and I try to get her to drink all kinds of juice but I can't, so I'm not going to force her. She'll drink it eventually.

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Once I knew that Karen was sick I had to do exercises every day or two or three times a day and more if I had time. I have to work hard to get her to do things other babies would do by themselves. I have to see that Karen comes first, not only in my work, but because she needs a lot of attention and a lot of love. I have to do whatever the doctor tells me for the sake of Karen. I want to do my best and hope for the best for Karen so that's why I have to work hard with her and so does her father, so Karen will be able to learn as much as she can. We - her Mom and Dad - were very happy when Karen was born and we still are. But I must admit that I was a bit disappointed when I heard that Karen was sick and may not do what a normal child would do. We were very hurt - and it still hurts when we see other babies of her age walking, it really bothers me sometimes. I'm mad inside and say to myself why do other people have babies who are full of health and mine is sick. I always wonder why it had to happen to us, why, why, why, but there is no answer. I guess God wanted us to have her. We love kids and it hurt when the doctor told us that it would be better not to have other children because the chances of having a normal child are very low. I have had a hard time accepting that, and still don't. We have hopes for Karen and I think she'll get to do like other kids or almost as well. We give her all the love we can and do what is best for her and hope that some day scientists will discover a cure. The thing that bothers me the most is when I see children that are not well taken care of, that drives me crazy because I love kids and now I see myself with Karen and still have to do what I can for her while thinking that I won't be able to have another baby of my own. It hurts.

We are ready to adopt a child but it is just not the same. I can't see why we have to go through with this. It's a very big responsibility to have a child like Karen and a lot of work and needs a lot of patience and hope. We cry a lot, especially me: men are stronger than women so they don't like to cry. One bad thing to go through is when I meet someone and they ask how old Karen is. Then I say one year, and they ask if she can sit or does she crawl or walk. It's always the same story: she is sick etc etc. That drives me real crazy. Then I get really angry. Why do I have to answer like this, why can't she be like all the others. I know she's not the only baby in the world who's sick but I can't accept that mine is and that we'll have to live with it. I guess that's the way it has to be and all we can do is hope for the best and pray to God to help Karen and keep us in good health so we can take good care of her the way I want her to be taken care of. We'll always have love and hope.

The Second Year of Karen's Life

Her 13th month

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This was a busy one. She had 4 more teeth which made 12 and was cranky because they were a bit big. We went to the Sydney City Hospital Clinic where we saw Dr. Brown, the assistant to Dr. Campfield. He said that Karen had made some progress and that he would give the report to Dr. Campfield and would send a report to our family doctor. He showed me a couple more exercises that I should do and will do and said we should go back in 6 months. We also went to the Inverness Hospital to see the Physiotherapist to see if she could give me some new exercises and she did give me a couple more. She was surprised by how well Karen was doing, considering her sickness, and said I was doing a very good job with Karen, which encouraged me a lot. Karen has had a little cold in her stomach and she was blocked - you know what I mean. Her breathing was noisy. I took her to the doctor who gave me some medicine and then she was ok after a couple of days. She is still making progress. She can stay in the sitting position for a long time now, about 10 minutes, with a lot more confidence in herself. And she can play with a toy too for a while. This month her bowel movements were regular with the glycerin suppositories that I give her in the morning and again at night if necessary.

Her 14th month

Karen's 14th month was pretty good. She has one more tooth which makes 13. She is still a good baby, her bowels still work fine with suppositories. The exercises that the Physio at Inverness gave me are pretty good. They are to make Karen able to stay on her hands and knees and I think this will come with a lot of work and patience. Karen pushes her walker backwards now and doesn't mind it as she can hold her head a lot better. I am glad because now she can stay in a sitting position she can be in her playpen for half an hour before she falls over. She really enjoys it, knowing she can play and won't fall right away. Also this month when she sits in her chair, she grabs her feet and takes her socks off. And if we ask her "where are your toes, Karen," she looks at them. She can say "bye bye" and clap her hands when we ask her to. Karen still sleeps good and eats well too.

Her 15th month

Karen has one more tooth. She got a bad cold but after a week she was ok. She really does understand now; when you ask her to wave bye bye she does it. I think she is doing better, little by little. Now that the weather is nice I go for a walk with her every day. She doesn't like it when I stop the stroller; she cries, she wants me to keep on going. While I'm moving she swings her legs and doesn't stop; it is good for her to get some exercise. She still pushes her walker backwards and likes to sit on the carpet by herself and play with her toys. She eats good. She sleeps only once in the daytime and then she sleeps through the night. She now says some new words that we don't understand.

Her 16th month

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Karen caught the summer flu, as we call it. She had it for a couple of days but then she was ok. I put her in her swimming pool and she loved it. She can now move her walker quite fast, going backwards. This month she really got a lot of strength in her legs. If you ask her to show her belly, she shows it and makes you stroke her feet. She eats very well. Ever since she was 7 months old she has usually woken at 5.30 a.m. but now it is usually 7 or 8 o'clock, so it's better for me as I get more rest. Karen likes the T.V. She watches the cartoons and kids' stuff.

Her 17th month

Karen was very lively this month. She is getting a lot of strength in her legs. We have been for a lot of walks outside and she loves it. She loves to be in her walker which she pushes backwards. She eats and sleeps well and drinks very well from a glass so I don't give her a bottle any more. She is always very happy. I'm always taking pictures of her. We have a cat for a pet and she likes it. When the cat goes near her she grabs it by the ear or the tail. The cat doesn't mind; he won't hurt her; he knows she is a baby. It is nice; it gives her something to look at. She watches him run about. I'll be going to Sydney with Karen on the 21st to see Doctor Brown.

Her 18th month

We went to Sydney to the clinic. They said she had made a little progress. I went to see the physiotherapist and she showed me some new exercises. Karen doesn't want me to hold her bottle now; she can drink her milk by herself and that is nice. She doesn't like me to put a piece of cookie in her mouth, she wants me to put it into her hand, then she eats it. She is learning and I can see that she wants to do things for herself. That's good. I still do her exercises. We went to see Karen's doctor and he gave her a needle that didn't bother her at all.

Her 19th and 20th months

Karen has been very good, without much change. One thing that I notice is she plays more with her toys and doesn't throw them down as often as she used to. She says "car car" and "grande grande" meaning big big girl. She is always cheerful and jolly. She likes to be in her rocking chair and in her walker too. Karen likes a lot of attention. She sleeps and eats well. She seems very happy and contented.

Her 21st month

Not much change. Karen is active and plays more and more. She has had a very sore ear but it is starting to go away. And also a sore shoulder which may be sore muscles. She is less scared of people than she used to be. She is very good.

Her 22nd month

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Her sore ear is an ulcer which may last for a year. She caught a cold and had a little fever but now she is ok.

Her 23rd month

Karen's left hip is dislocated again. I went to the doctor and they tried to put it back but couldn't. That night they put her in traction but that didn't work either so we have to go to Halifax and hope to get it fixed. Other than that she is ok.

Her 24th month

We went to Halifax and Karen saw Dr. Brown and Dr. Campfield and other doctors. They took x-rays and photos and an ultrasound and blood tests and also a urine test. They made an incision in each of her legs. It is her muscles that are the problem: one muscle was too loose and the other was too tight. The one that was too loose caused the problem with her dislocated hip: it was too loose to keep the bone in place so they loosened one and tightened the other so it would work properly. They were very pleased with what Karen can do and also very nice. After a week she had a fever of 103; the cause was a little infection in the incision but I think it is alright now. I saw the physiotherapist too and the woman who is in charge of the Muscular Dystrophy Association and they are to send me a chair so I can give Karen a bath in the tub without any danger of hurting her. And also a chair that they call a corner seat; it is made of wood. I think it is going to be really nice. Now she just has to heal and I hope she is going to be ok.

Mom and Dad during Karen's second year.

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We try to take care of Karen the best way we can. But at times it is hard. We have to accept that Karen is a big problem but we are going to help her and accept it too. I still find it hard sometimes, like when there is a birthday party. I still feel the same; it hurts, so I can't make up my mind to go because I know there will be lots of kids who are normal but Karen won't be able to do the same as the others. It hurts me to see them all. When there are one or two kids at my home, I don't mind as much. I've accepted that because they are always the same boys or girls. But I do mind when people ask me how old Karen is and I say "one and a half" or "two" and they ask if she can crawl or walk and will she ever be able to walk. That bothers me a lot. I won't show it, but it does hurt. Well, I'm trying to do my best. I have a lot of friends and a lot of relatives who are very helpful. I appreciate all those who help me go through it; it can't be done alone. I have great faith in my family doctor; he is great to Karen and to me and encourages me from time to time. And my husband helps me a lot and Karen too because she is a good baby and we love her.

The Third Year of Karen's Life

Her 25th month

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Karen went to the hospital in Cheticamp because of a chest cold; she was there for a week and a half. We went to Sydney to the clinic where doctor Tibbles found her very well. We have to go to Halifax once in a while for check-ups and we must go back to the clinic every six months. Karen had a high fever of 103-104 because of her tonsils but she is ok now. We got the wooden corner chair from the IWK and the one for the bathtub and they are very nice. Karen is getting better.

Her 26th month

Karen again had a high fever, not from a cold; it was her tonsils that were bothering her. The doctor gave her some medicine and it went away. She sleeps and eats good and always seems very happy. She is being checked every month by my family doctor.

Her 27th and 28th months

We went to see Dr. Brown at the clinic in Cheticamp. He said that the operation done on Karen in Halifax was ok but that he would like to see her later on. Karen swallows her saliva better now, so she doesn't need a bib any more. She has one more tooth through this month: still three more to come. Karen can hold a pen now and likes to write on paper. She loves to play, especially to go outside and play with her cat. She had a rash this month but it was gone after a few days. When I sit her on the floor, she is starting to move sideways. She understands everything we say to her.

Her 29th month

We went to Sydney for the clinic and Dr. Tibbles said Karen was doing fine. But he is kind of worried about her chest, so he is going to talk to a specialist down in Halifax and if he wants us to go to, they will let us know.

Her 30th, 31st and 32nd months

We haven't heard from Dr. Tibbles yet so we just have to wait. Karen is still good, eating and sleeping and always happy. She likes to sit on the floor and move around for a couple of hours a day and to watch T.V. She likes the cartoons and Romper room, Sesame Street and Mr Dress-Up. She likes lots of attention. She wants to eat by herself - by that I mean that I give her a plate and spoon and she feeds herself pretty fair. She makes a bit of a mess but who doesn't! She drinks her milk from a bottle by herself and can also drink from a cup or glass once in a while when she wants to. It'll come in time.

Her 33rd month

There has been some change in Karen; she now sits on the floor and can turn round and go sideways and go forwards too. She moves about 2 or 3 feet around her. And now if she wants a certain toy or anything else she might like, she will point to it and say "hmm, hmm" until we give it to her. Otherwise all is the same.

Her 34th and 35th months

We have been going outside a lot doing sleigh rides and Karen loves that. It also makes her sleep more. She got a little cold but it was nothing serious. Eating by herself is getting better. I decided to let her hair grow for a while. She doesn't mind when I put it up in pig-tails and I prefer it, so I'll try it for a while. We are to go to the clinic next month in Sydney.

Her 36th month

We didn't go to the clinic because Dr. Tibbles was not there so we have to wait until September to go. We will be going to Sydney next month to see a physiotherapist because I think it would be good for Karen if she had a special walker. If the physio thinks we should have one, we will get it. We had a party for her Birthday. We had fun and Karen did too and she had lots of presents and money and a lot of people came so she had lots of attention that day for sure! It was very nice.

Mom and Dad during Karen's third year

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We love Karen. She is the most important part of our lives. As long as God gives us power we'll do everything that we can for her. Birthday parties are still very touchy for me. I went to one or two last year but I couldn't wait for the moment when I could say "I'm going home; See you, bye-bye." I only went to please the other parents who wanted us to come. I think that Karen enjoyed them, but me - it hurt me in a way. And it not only hurts, it gets me mad because I know Karen can't do like the other children and I feel sorry for her. When she is home, anyone can come, it's not the same: I'm home and I'm used to it.

We put our name in for adoption and now all the red tape is done and we just have to wait, and it may be a long wait. I think it would be the best thing that could happen to us to have another child in our home. It would make everybody happier, even Karen. She likes kids. The sickness that Karen has is still hard to accept but all the help that we have makes it easier. All my friends and family are very helpful; they know what I am going through. There is one person who is very special to me who is not a relation but a special friend to me and that is the parish Priest. From Karen's first year until now he has been the one who helped me most to understand when I feel I need some-one to talk to and someone to tell my problems to. Just by the way he talks to me, he really helps a lot. It is very nice to know there is a special person you can count on if you need encouragement. My family doctor is very supportive too. It is good for a person to feel wanted. It's not that I want to be pitied or anything, but it is nice to know there are people who understand what one is going through. And we feel that with the help of God and relatives and friends we can go all the way. Everybody needs somebody because nobody can go through life alone, so it's very much appreciated to have what we have.

The Fourth Year of Karen's Life

Her 3rd year and 1 month

We haven't had the call yet to go to Sydney. So we still have to wait. Karen had a good Easter. She has had a cold this month but it wasn't too bad. Every night after supper I play the guitar and she likes that so I've bought her a little guitar and she's having fun with it. She loves music.

Her 3rd year and 2nd month

There is nothing new this month. I returned the corner chair and the bather that we'd received from the IWKH because she has no more use for them. So somebody else may be able to use them.

Her 3rd year and 3rd month

We went to the clinic in Cheticamp on May 16th to see Dr. Brown and he said that Karen was ok for now.I didn't think I'd be able to say it this soon, but I can! We have adopted a 1 and a half month old boy. His name is James. Karen likes him a lot. She holds the bottle to feed him and she is proud of that. We are glad too.

Her 3rd year and 4th month

Things are very exciting and a lot of fun with the two of them. Karen likes James. They get along well. Karen was sick for a couple of days. We go outside a lot. We had James' christening and Karen had a lot of fun.

Her 3rd year and 5th, 6th and 7th months

Karen and James are going outside a lot for walks and to play in the swimming pool. We went to Sydney City Hospital to get Karen a walker and she really likes it and she can push it backwards. I find it very nice and Karen is really excited about it: it makes her feel that she is older and can see more, so that's nice. She likes to throw things on the floor; we pick them up; it's her favorite game.

Her 3rd year and 8th month

This month Karen spent a week and a half in the hospital because of flu. She was very blocked in her chest. They had her in a mist tent all the time. She didn't like it, but I stayed beside her and she came through that ok. While she was in the hospital she fell in love with the cup that was on her tray and since then she always drinks from a cup which is nice.

Her 3rd year and 9th month

Her speech is getting better; she says 'mama' and 'dada' ( dada first!) and she says 'mama' and 'meow' and 'ho!ho!ho!' Like Santa Claus. And she sings She had a good Christmas and she enjoyed watching James open his gifts.

Her 3rd year and 10th and 11th months

She was in the hospital just for one night because she had a high fever. After a couple of days she was ok. There is no real change. She is good and eats well.

Her 3rd year and 12th month

This month we celebrated her 4th birthday. We had fun and she had fun too. She loves to have all those people around and all the attention. It was a nice birthday party; and all the more so to have James by her side. Later in the month it was James' birthday so she has had a lot of excitement. Her speech is still getting better. This month I gave her a treatment of Entacyl which did her a lot of good. She is always very happy.

Mom and Dad during Karen's fourth year

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I have to say that this year was very special for us because we got what we wanted, a baby boy. He was only a month and a half when we got him. We called him James. We are very proud of him. He has made all the difference in the world for us. We adopted him in May and now he is one year old. Karen really likes him: it changes her too and keeps her busy. I find that this year wasn't so bad to take because I guess we are getting used to Karen's sickness. Even though we have James, Karen is not left out and she is still our special little girl and always will be. We love them both. She gets up in the morning with a smile and goes to bed with a smile so I am sure she is not in any pain. She drinks from a glass and eats by herself; there are things I don't have to do that I used to have to do. It is easier on us. This year I met with a couple who have a child younger than Karen who has M.D. too. We have become good friends.

I am related to the father of the child. We get together once in a while, me and the mother of the child just to talk about everything and if we don't see each other we get on the phone and talk. We understand each other very well, we know what the other is feeling and can talk about it,so it's very good. Some times we have questions that we wouldn't ask anyone else but we can ask each other. I think we count on each other. I think that's why it was easier on me last year with someone to talk to with the same problems. Problems that not everybody would know about. I am glad to have met her and the family. We encourage each other and it helps to cope with it. So we went through another year and it wasn't so bad. When you think of everything, we are happy and that's what counts. We love each other and we love Karen and James both. We feel that both are special because Karen has MD and James is adopted. We think we give them all the attention they need. I hope next year will be as nice as this was, or better. With all the love we have and the help of others and with the help of God we'll be able to cope for many years to come. I know God will help us through this because there must have been a reason for having Karen. That reason we'll never know but we'll do our best to understand and live with it.

Karen's 5th year

Her 4th year and 1st month

Karen had a good month. She wasn't sick. She had a good Easter. She had more fun this year playing with her toys and eating her Easter eggs. She liked watching James eating his eggs; she laughed because he had gotten all dirty.

Her 4th year and 2nd month

This month was Karen's uncle's birthday. She was able to blow out the candles one by one; she liked that a lot. We have been outside quite often. She was watching Sesame Street one morning while I was washing dishes when she started saying 'Big Bird, Big bird.' Once in a while new words come out.

Her 4th year and 3rd month

Karen developed a rash but I think it was from a sunburn she had had a week before. We went to see Dr. Brown at the Cheticamp clinic. He found that Karen was fine and had made some progress.

Her 4th year and 4th, 5th and 6th months

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We bought Karen a stroller for inside the home and for when I go out somewhere. James pushes her around the house. Karen says some new words like "porte" (door) and "tracteur" and "eau"(water) and "Memere" and "Pepere" (grandma and grandpa). Her speech is getting a lot better. Now she will answer a question; if Memere asks her where she has been today she'll say "for a drive"- and if asked in what? She'll reply "in the truck." I think that's pretty good. I used to put her to bed in the afternoon every day, but most of the time she didn't sleep, so now I put her down for a nap once a week and it does her good going to sleep once in a while.

Her 4th year and 7th month

We went up to Sydney to the Easter clinic to see Dr. Tibbles. He found that Karen was ok but he wanted her to go to Halifax in April '86 to have a chest x-ray and to have the specialist check the hollow she has in her chest to see if it bothers her breathing or anything else. So she will have to wait.

Her 4th year and 8th month

Karen had diarrhea that lasted two weeks but she is ok now. I counted the number of words she can say and it is over 25 so it's pretty good.

Her 4th year and 9th month

Karen had a nice Xmas this year. She was able to open her gifts herself and when she had finished with one she would make for another. She could tear the paper off but we had to help her open the boxes. She loved to watch James open his gifts.

Her 4th year and 10th and 11th months

Now since she had diarrhea I just have to give her one suppository and she goes by herself. So that's a big thing off my mind. It may not be for long but while it lasts it is good.

Her 4th year and 12th month

On her 5th birthday she blew the candles out one by one and she was proud of that. She had fun. She didn't want to have breakfast or dinner, she just wanted cake and ice-cream. She ate everything I gave her.

Mom and Dad during Karen's fifth year

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I realize that it is getting easier to accept Karen's illness. We have had a good year with Karen and with James, watching him learn to walk and everything. Times goes so fast! What I find hard now is to wash Karen's hair. I can't do it alone so if Linus is not there, I have to call someone else to come and help. This year we bought her a new stroller to get her around. I wanted to start with a stroller not a wheelchair. I wanted to get used to it, pushing her about, but I know that next year when we go to Halifax they will measure her for a wheelchair; but then I won't mind it so much because I will have got used to her in the stroller so it will not seem so different. But I needed the stroller to get used to it so it will be easier to accept a wheelchair in the house. As long as we have our friends and God to give us our health and courage, we will be fine. And we put in our name for another child so if we get one it will be good. While we wait we are going to take good care of Karen and James while we can.

Karen's 6th Year

Her 5th year and 1st month

In April 1986 we went with Karen for a check-up in Halifax. She got a wheel chair while we were there and she just loves it. She likes us to push her around. The doctor said they were going to leave her chest like it is for now. I was glad.

Her 5th year and 2nd, 3rd and 4th months

Karen is always after us to push her about in her chair. She really loves it. She is still good, although she was sick for 3 or 4 days , sleeping all the time.

Her 5th year, and 4th and a half month

This month Karen's grand parents celebrated their 50th wedding anniversary, so she was very busy and had a lot of fun. There were lots of people to drive her around. And she knows that school will soon start so she is very excited.

Her 5th year, and 5th and a half month

Karen started school in September and she hasn't missed a day yet. She leaves at 9 a.m. and comes home at 2 p.m. She just loves it! During the first two weeks, I stayed with her, then after that she had a Teacher's Aid. I am sure that it will do her a lot of good to be with other kids.

Her 5th year, and 6th and a half month

She is still going to school. She went to see Dr. Brown for a check-up in Cheticamp. She also saw Dr. Bird who replaced Dr. Tibbles. I am very grateful to Dr. Tibbles who was very nice to us and Karen. Both doctors said it was nice for her to go to school. Dr. Bird recommended that she have a flu shot - which she did, a week later.

Her 5th year and 7th and 8th months

No change in this month everything went ok.

Her 5th year and 9th month

She got sick this month but she has only missed 9 days of school since September. So I think that's good. She has her first report card and was some glad to show it to me!

Her 5th year and 10th month

Karen was all excited when we put up the tree and she had a great Christmas. She had fun just watching James open his presents. She got a purple plush toy for Christmas which is what she'd wished for, so she was very happy. She lost her first baby tooth on Dec. 31st. We were just as excited to see that as when they first came through! I thought to myself " she is growing up."

Her 5th year and 11th month

Karen lost 2 more baby teeth. She gave them to me so I could put them under her pillow to see what the tooth fairy would bring.

Her 5th year and 12th month

Karen has had another birthday. She was very excited; she blew out her candles; not all at once, but she did it. She had friends over and her teacher was here which she liked a lot. James' birthday was right after Karen's, so she was all excited again.

Mom and Dad during Karen's 6th year

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This year was hard for us, having a wheelchair in the house, but on the other hand it was easier to lift Karen in and out of a wheelchair than a stroller, and easier on my back too. It was good to see her so happy in it; that helped to accept the fact that she needed it. We have also lifted her bed up to my level so it is easier to change her and to wash and dress her. We put a set of rails around it which makes it safe. And then there came a big step for us as well as Karen. It was time for her to go to school. She was all excited about it! The School Board wanted Karen to go to school in Cheticamp but I refused. The teachers here wanted Karen to come to school in St. Joseph du Moine, so that's where I took her on the first day. I had to stay with her for two weeks before they got a Teacher's Aid. But we got one and I knew the lady who got the job and knew she would take great care of Karen. We were happy that Karen got along well with her and the teacher.

The first day that I took her to school when the Teacher's Aid was there, it was hard for me to have to leave Karen with her, although I knew that she would be taken good care of. It was hard to have to put all my trust in another person, but I knew it was for Karen's good because she too had to learn that someone else could take good care of her, just as well as Mommy. That first day I came home and sat by the phone waiting for it to ring, but it didn't, so when the time came to think of picking her up I was really glad. It was three weeks before I could say to myself "she's in school and she's ok; if Karen needs something, they will let me know."

Five months after that, the Teacher's Aid got another job and I had to go back, but soon another Teacher's Aid arrived, so everything worked out alright. Karen liked her and after a few weeks, it was all just as usual, though Karen missed the first one who came a few times to visit her, which made her very happy and after a while she was just as attached to the second one. The day she came home with her first report card was very emotional for me. I was very proud of her and she was very happy to show it to me. I sat down and I said to myself "is it really time for Karen to be coming home with a report card." I couldn't believe it. It was one of my most special days with Karen. She had learned two colors and a lot of new words which I thought was great and more than I had expected. At the end of the school term she got another report card. She was again very happy to show it to me, just as she enjoyed showing her work to me every day when she came home from school. When Linus came home from work, every day, he had to look at her work before supper: she was so excited to show it all to her Dad!

Her last report card said that Karen would be continuing the work next term where she had left off, but we were just as proud as if she had passed. We had got what we wanted - to see her in school and being with other children and learning to socialize and being able to be away from me-so I think she did pretty good. She learned not to always depend on me. And I learned that I couldn't always be at her side. It was a very big change for us. I could see that she liked going to school very much, she really liked the kids and they loved her: if one day she wasn't in school they would ask the teacher where she was.

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In the summer time, she found the time long with no school. She was always talking about it. When school started again she was glad to see her teacher again and the kids. Last year she went to school at 9.30 and came home at 1pm. This year she goes from 9 until 2 and she just loves it. Last year, also, James missed her when she was at school but now he goes to pre-school so it is a change for both of them. So sometimes I find myself alone in the house and cannot believe it, it feels as if there is something missing. Now Karen knows more colors and she sings a bit and talks a lot more. So that's why I said at the beginning of this report that it was a hard year - having to accept a wheelchair in the house, going to her bedroom and seeing her bed raised up high and then taking her to school: it was a big change for me and for Karen too. She seems to be very busy and we are happy just to see that she is.

All of this just brings us closer to one another and I think that's what we need. I thank God because I think Karen has brought us more joy than any other kid could have. We are all doing our best for both children by giving them love and care and by teaching them what we know. We thank God for giving us what we have and for keeping us in good health so we can continue what we are doing for Karen and James.

Karen's 7th Year

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Her second teeth are coming through. She spends a lot of time outside now that the weather is fine. I think she misses school. We got her a kitten so that keeps her busy. She learned 5 colors at school this year and she knows and recognizes her name in writing. She has a vocabulary of over 40 words. Summer is now over and Karen is going back to school and is all excited to go. This year she goes to school earlier and will stay all day. We can see a big improvement in her work in tracing and coloring. I went to see Dr. Brown last week - which was November 21st, 1987. I took a picture I had taken of her 2 years earlier and he compared the differences in her spine. He will let us know what they decide; if something has to be done, he'll be in touch. In November she also caught chicken pox which she got through alright. She was sick a few times during the winter which caused her to miss a few school days. She had a very nice time at Christmas and was very happy. They had a concert at school and she was in it. She just loved it. Other than that, she is still the same Karen as joyful as ever.

Mom and Dad during Karen's 7th year

As I mentioned, when Karen's teeth started coming in, I was very excited, saying to myself that she was growing up. She was born with a hollow chest (one that curved in) and I remember that the first or second time that I'd taken her to Halifax, they had said that maybe when she was older she would need an operation for that. But since then, the specialists had not said a word about it, which I thought was a good sign. But in November when I went to see Dr. Brown at the clinic in Cheticamp, he started to talk about Karen's back. I said to myself "oh no" because I had always thought they were concerned about her chest. But I knew that Karen's spine was curved and was not getting any better. So he took a picture of her and I gave him one that I had taken a couple of years earlier.

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He kind of told me that we would have to make a decision about whether to operate or not. The operation would take about 5 or 6 hours and in Karen's case he wasn't sure if she would get back to breathing on her own. So I got very scared. I told my husband about it when I got home, but then it took me three weeks before I could speak about it to anyone else. And let me tell you that it is not easy to talk about - or even to write about. I could see it's being worth the risk if Karen were in great pain. But she never had any pain, so I didn't like to think of her going through that. It's a hard decision to make. I let them know how I felt about it and for now all we can do is wait and see. All this has changed me, like night and day. I am not the same person any more. I always have it on my mind. I have had 2-3 months with a lot on my mind. Talking to other people helps but nobody can decide for us. Good friends are one good thing to have and we leave the rest in God's hands. He has an answer to everything - which we don't have.

Karen's 8th -9th year

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We got the word to go to Halifax on May 9th and on the 16th, Karen had an operation to release the muscles of the back of her neck, so she could bring her neck further forward. She got through the operation ok and it did her a lot of good. I think that the doctor himself was surprised how well she got along. She was also measured for a new wheel chair. This one will have a power unit on it but I will be able to turn it off if I wish to push it manually. Before we came home, they made her a neck collar that she wears through the night and part of the day. We have to go back on August 3rd to get the wheel chair. And she may have some more surgery done on her hips and legs. This month we also saw the physiotherapist that we have down here; she showed me exercises we could do for Karen's neck and elbows. In August we went to fetch the new wheel chair, we found it had the power unit and it could recline, which was very nice for Karen. When we got home she was sick with a cold and had a long sleeping spell. I don't know if it was the excitement of having a new wheel chair or what!! We have to go back in October or November so they can release the muscles in her hips and maybe her ankles. The doctor thinks that doing this it would relieve a lot of pressure on her back. I hope so. Because I know that if it doesn't work, the next step would be to put a steel rod in her spine.....

I just don't want to think about this anymore.

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20 years have passed since that last report...

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.

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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.

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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.

Although she never walked, Karen is still walking in our hearts every day of our lives. May God bless you Karen our little angel.

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Cite This Page (APA): Gisele Leblanc. (2011, February 24 - Last revised: 2019, March 6). Karen: Tribute to Life of Girl with Muscular Dystrophy. Disabled World. Retrieved October 10, 2024 from www.disabled-world.com/disability/blogs/karen.php

Permalink: <a href="https://www.disabled-world.com/disability/blogs/karen.php">Karen: Tribute to Life of Girl with Muscular Dystrophy</a>: After four or five months of growth we noticed that she was kind of slow and were told that she had Muscular Dystrophy.

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