There’s one topic I haven’t really covered in depth here that I think probably should have been one of my first entries: parents. Parents can be many things but parents of children with disabilities are a kind of parent all their own…a truly special kind of parent. Just like no one with a disability has asked to be born with one, no parent of a child with a disability has ever asked to have a child born with a disability either.
I think a lot about how that must have been for my parents. I think about the moment they found out they had a daughter with muscular dysrophy. When I was born (though I was premature), they thought that had a perfectly healthy, non-physically challenged daughter. The thought there was something wrong with me probably never even crossed their minds until I was 2 and wasn’t making the normal physical strides children at that age do. I don’t know if I was even in the room with them when the doctors told them I had central core or not, I was too little to remember anyway, but I can’t even fathom what that moment was like. It’s such a rare form of MD too and I can only guess they knew much less about it then than they do now. I’m sure the news that your child has something that is going to potentially make life harder for them is something no parent wants to hear.
Unfortunately, because of my disability, I wasn’t always a fun person to be around either. Though I like to think I was still a pretty good kid overall (right mom and dad? 🙂 ), I still struggled greatly with depression and self-image issues. There was a large chunk of my life where I just wasn’t happy and nothing anyone did or said was going to make me that way. Having experienced people like that in my life now, I know what a helpless feeling that brings. You care so much about the person and want to be able to help but you can’t. They have to help themselves. So I imagine as a parent, when it’s your child, that feeling must be ten fold.
I was thinking the other day about all of the support my parents gave me growing up and everything they did in order to try make me happy. They bought me a guitar when I wanted to try pursue that; a piano to make it easier for me to play for the 3 years or so that I played and took lessons. When I was struggling with how bad my skin was, my mom took me to the dermatologist so she could prescribe whatever was needed to help clear it up. I got facials, tried hundreds of not always so cheap products, and even went on Accutane twice (and my mom went with me to almost every appointment when I had to give blood which is one of the many requirements to be on the meds).
I don’t think there’s anything my parents wouldn’t have done to make me happy or to try to make me feel fulfilled because I was different than everyone else I knew, and I don’t just mean with material things but emotionally also. I wish all kids, disabled or not, were as lucky as I’ve been to have such wonderful and supportive parents.
I dedicate this blog to my parents and to all of the wonderful parents who are out there right now caring for their children, doing whatever it takes to make sure they feel loved and supported and putting up with the extremely difficult challenges that might come up in raising a child with a physical disability. You are appreciated more than any one person can say and none of us could do without you!