Growing up, I had two parents who had mostly different attitudes about how to deal with raising me, but one important thing in common. In hindsight I actually think it was the balance of their attitudes that ended up being perfect. Taken alone, I’m pretty sure neither strategy would have worked.
My mom was the constant worrier. Whenever I would work down in the basement on the computer at night she would stay up on the couch to make sure I’d get up the stairs safely, which I always did. Half the time she’d fall asleep and never realize I came up and went to bed. This sort of worrying frustrated me because it felt completely unnecessary to me. If I fell down the stairs what was she going to do? She certainly couldn’t rush down and catch me.
Although the constant feeling of worry was annoying, it led her to stay on top of the things I needed to do even though I didn’t want to. She’d get me to my MDA clinic appointments, make sure the people who needed to know about my condition did (sometimes passing along TMI!), and do the things that required the attention of someone who worried — which I know now means “cared.”
My dad would sooner have chopped off a toe than go to an MDA clinic appointment. He’d go to sleep at night thinking that if I fell down the stairs, he’d just hear it and wake up. He was practical, and realistic. My dad never seemed concerned that I had muscular dystrophy, even if he felt it. It was a non-issue with him. When necessary, he’d do things like put in an extra step at the front door or a railing up our front stairs, but he wasn’t constantly worrying about something happening to me simply because I had muscular dystrophy.
Thankfully I think I’ve absorbed the best of both of these philosophies. Thanks to my mom I am mostly proactive when it comes to my health and dealing with muscular dystrophy. Thanks to my dad, I don’t let the fact that I have muscular dystrophy consume me or worry me.
The thing that my parents had in common when it came to raising me is that they never gave me the impression that I couldn’t do something. They maintained high expectations, didn’t treat me any differently than my sister, and were very hands off when it came to the things I would do or try. Neither of them coddled me. They rarely did anything for me that I could do myself or learn to do myself.
It’s frustrating when I see parents who assume their kid with muscular dystrophy needs every little thing done for them. It’s not true. This is a huge disservice to that child. How is a child going to learn how to be independent if they’re dependent on their parents for everything? It just won’t work. Then pretty soon you have a kid who doesn’t do anything, has no friends, doesn’t go any further in school than they have to, and never becomes a productive member of society. If you’re doing this, stop. Even children with limited physical function can learn to adapt and do extremely amazing things. If you don’t believe me, check out one of my favorite books, the story of Kyle Maynard.
I’m sure it was difficult for my parents to see me struggle with physical things like sports or stairs. But they never let me know it bothered them so it never bothered me either. They never gave me the chance to rely on them for the little things which is why I ended up trying anything. Why? Because I thought I could do everything.