I remember the day that the doctor walked into the post-op room we were waiting in. Zachary had just had a biopsy to confirm our worst fears. Zachary had muscular dystrophy. She did not need the biopsy results – she could tell just from looking at it. To say that I felt weak in the knees is probably an understatement.
Zachary was two, he was supposed to have his whole life ahead of him – I thought they had handed him a death sentence. I became very depressed and I felt like the worst mom ever – why was I depressed, Zachary was the one who was sick – not me. This made me feel even worse. I finally went to see a doctor – he did not tell me it was going to be ok, he did not tell me my son would be fine – he told me that I needed to grieve for the child I had lost. He said that we grieve for a lot of things during the course of our lives. He said that I went home with a healthy baby and we were supposed to be looking forward to all the t-ball games and PTA. Instead we were looking at doctor visits, therapy, and loss of ability. He gave me permission to grieve but then he said I had to get over it and get on with being Mom. And I did.
As a parent we look for the day when our children can walk, be potty trained and go to school and learn just like the other kids do. But my reality is at 10 years old, my son can’t walk, he is dependent on me for all his restroom needs and school at best is a daily challenge. He has to be turned several times during the night, someone has to pick up things for him off the floor, and he has to be dressed and undressed.
As I look back over the last 10 years, I still wonder how I do it. God is so good. The endless doctors, therapy, wheelchair clinics, AFO’s – and let’s not leave out the fact that I am a single parent, since Zack was 7, and I work full time and I attend college. Crazy yes, would I change it for anything short of a total cure – I am not sure.
I have learned over the years that Zachary was not handed a death sentence. He was blessed with a love of life, a whole spirit, and a personality that people fall in love with. People have made life changing decision after meeting Zachary. God uses him every day. If his body was whole – would he touch the lives of others? I don’t think so. He has an old spirit – wise beyond his years.
The beginning. Zachary was born with bilateral hip dislocation. The doctors thought he had not had enough room in the womb and his hips became displaced. He was in a brace for 3 months and given a clean bill of health. Accept that his little hands were in a cupped position with his fingers all tightly together and overlapping. The pediatrician said that it was strange but he should out grow it. This would be the first time that I did not listen to the expert but instead listened to my mother instinct. Every day I massaged his little hands out straight. I am glad that I did. I know it is possible that the doctor was right – but one thing I have learned over the years – you can’t go back and get a second chance with our precious little ones. It would not be until Zachary was one and started trying to walk that we noticed any other problems. When he started trying to walk – his feet and legs would bend in an awkward way. We took him to the doctor and while he was misdiagnosed with Ehlers Danlos we would later find out that this doctor was close. It would not be until Zachary was two that he was diagnosed with Muscular Dystrophy and not until he was 7 would he be diagnosed with Ullrich Congenital Muscular Dystrophy (which actually crosses over into Ehlers Danlos).
Zachary has had total tendon transfers on both ankles – at one point he was actually walking on his ankle. Two muscle biopsies, a skin biopsy, a broken leg and a broken arm. He has had tubes in his ears and his tonsils and adenoids out. He has worn AFO’s (leg braces) since he was two. He started using a wheelchair for distance at 3 and by 5 was totally confined to it. His muscles get weaker each year. He cannot scratch his head but, he can take off his shirt – given enough time. He cannot raise his arms above his shoulders but he can play video games.
His whole family feels blessed for every day that he is with us – watching him grow into the young man we have always dreamed of (ok so he is really a smart-mouth, sassy, get in trouble, VERY normal preteen – but I can dream can’t I).
Zachary’s Story. I remember when I could still walk. I remember that I would get very tired and get slower and slower. I don’t remember when I first started using a wheelchair or most of my surgeries. I love my wheelchair. I never get tired while walking and I never get worn out but I can lean back in my chair and rest. I love to go fast in it – it’s like having my own car. I miss walking but I still love my chair. It’s ok that I can’t always do what the other kids are doing, so I just watch and sometimes race around by myself. I don’t get sad because I like being me. When I grow up I want to be a policeman. I don’t mind that my mom has to take care of me because we get to spend more time together.