Monday, September 04, 2006


I vaguely remember visiting my aunt, on summer vacation. We visited once in a while, since it was on the way home, from our annual summer vacation to Idaho. Idaho, was where my father was building our house. He’d save his money all year, and then take his six week vacation every summer, to work on our house. He had just completed the house, the year before he died, at the age of forty six. I have fond memories of spending many days at the house with him, and especially, getting to ride home to this house, to spend the night, while the other kids stayed with Mom, at our aunt and uncle’s house.

My aunt Alice lived in Iowa and had three children, two boys in particular, both of whom had Muscular Dystrophy. I only remember the one son, who was around eighteen if I recall, when we visited. He was confined to a wheelchair, and we didn’t see him much. I was far too excited about the prospect of sleeping in the tent outside the house, on a beautiful summer evening. This would be exciting, or so I thought. I don’t remember that we got to sleep there overnight, but we spent a fair amount of time out there, until we decided we’d much rather sleep indoors.

It’s odd to think back to him now, when remembering this story. Odd, because when we visited, it was almost as if he was invisible. I don’t recall seeing him sitting outside with us, as all of us visited in the back yard. I don’t recall seeing him visiting with us in the house, as we visited some more. Nor at the breakfast table, or anything else. It’s kind of weird, when I imagine what it must have been like, being disabled, and in a wheelchair, nearly forty years ago. I doubt accessibility was much of an option or that they even had a ramp for him to go outside in the yard.

I do remember what he had though. He had Muscular Dystrophy. I remember distinctly that he died not too long after our visit. His throat muscles wasted away to the point where he could no longer eat. That probably explains why he was never at the breakfast table, lunch or dinner table. I can’t imagine the torture that this must have been, not only for him, but for his mother, seeing her full bodied son, lose his muscles as they wasted away, only to be confined to a wheelchair and eventually die. All of this, before his twenty-first birthday. If life weren’t cruel enough, she would get to watch this entire scenario repeat itself with her second son, who also was born with Muscular Dystrophy. You have to wonder sometimes, how a mother could endure the death of not one, but two of her children, to the same disease.

Most years, I watch the Jerry Lewis Telethon for MDA. I didn’t this year, namely because I forgot. When Dear Son was young, I often wished I knew what he had, because not knowing was far worse, than anything else. ( In 2002, the ARX gene was discovered, and Dear Son was the first one identified with one of the three ARX gene patterns. To date, only four to five other boys have been identified with his gene pattern, the rest of the boys falling into the other two gene patterns.) I often wished that I knew what he had, and that we had a telethon of sorts, so that I too, could have some hope for the future. The hope that he could someday walk. The hope for a miracle. Hope for the future.

I think back to my cousins, who died from Muscular Dystrophy, and wonder what my aunt must think, as she watches the telethon. I wonder if her son’s lives might have been different. I wonder if she cries, when she sees other children on the screen, knowing what they will go through. I wonder what she would say, if they talked to her today, about what life must have been like forty years ago.

I also wonder what it must be like for the mothers today, mothers of children with Muscular Dystrophy, to watch the telethon today. I would guess it must be pretty exciting. Exciting, because you have hope, hope for the future and hope for a miracle. Sometimes, as a mother, that’s all you’ve got.


wolfbaby said...

I hope that some day you have a telathone that gives you hope... i look forward to the day that they can give all the young people with disabilities hope... hope is such a powerful thing..

cathy said...

I also wish there was more hope and more telethons for some of these rare disorders. I NEVER blog about it but a rare hereditary disease has devastated my family. It is called "hereditary hemmorhagic telangiectasia" Maybe one day I will take the leap and blog of it. But, I doubt it. I wish there was something to give you more hope than what you've got. You and Dear Son are always in my Prayers.

Anne said...

There are certainly days I'm glad Nicky only has down syndrome, we have lots of company and a pretty well documented path the follow. When I used to take Nicky for PT at the pool there was a little boy who had the time slot after Nicky, named Nikolas. Nikolas has a rare form of MD. He was nearly 5 in a wheelchair and had a feeding button in his stomach. He is smart as a whip and has a wicked sense of humor. His mother was initially told he'd probably walk but that hadn't happened yet. We switched PTs a few years ago and I don't know what happened to him, I hope he's well.

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