I wrote a post the other day that I almost didn’t publish because it mentioned my daughter’s disabilities, if only in passing. It wasn’t that I’m embarrassed in any way by her, in fact quite the opposite. She is amazing. But I’ll get to that.
I almost didn’t post it because sometimes people squirm when they see or hear about a disability. It’s uncomfortable. You don’t know where to look if someone is disfigured, you’re not sure if you should say something. I know, it happens to all of us, right?
But I sent the post to a friend to get an opinion, and I got about the best compliment my writing has ever had. It got posted. (And thank you.)
Art Blanchet just commented on that post and what he noticed was the bit about my daughter’s disability. Everyone else kind of let that slide, and it wasn’t the main point of the post anyway. But Art knew, and that was the part that got to him.
My Tall One has OCD, ADHD and Trichotillomania, which is shortened to “trich” (say “trick”) by those who are familiar with it.
You may know OCD, that’s Obsessive Compulsive Disorder, and if you saw the movie As Good As it Gets or watch Monk, then you know a little about it. Tall One has a nearly opposite form, she’s no neat freak. She has taught me to let go of the little things. It really does not matter how messy her room is … if I avoid looking in there. ;o)
ADHD is Attention Deficit Hyperactivity Disorder. She doesn’t quite bounce off walls like the boys with ADHD do, but her mind is EVERYWHERE. I think this is a big plus, and I think it will work to her advantage in her future. She has an extremely high IQ (yes, I’m proud, and scared) and she thinks of things that others just don’t see. Whatever she chooses to do in the future, she is going to be among the best. I have no doubt about it, not at all. I tell her she’s hard to take as a child, but she’s going to be an amazing adult. (And after we had her, I could not believe that other people would willingly have more than one child. I know now that she is simply not like other kids.)
The Trich is the hard one. She pulls her hair. Nobody understands this, and I won’t pretend that I do either. It’s soothing for her. She doesn’t even know she’s doing it a lot of the time. Well, thankfully she is on medication for her OCD that works on the Trich as well. There is NO medication especially for Trich, we just got a lucky side effect. But when she hits a growth spurt, her medication no longer works. She pulls her hair. Sometimes it’s just a little and you wouldn’t know. But when she hit puberty, she pulled it all. She looked like she had cancer.
People stopped us on the street and said they’d pray for us. I always felt kind of uncomfortable, she wasn’t sick. I would try to explain, but it just confused people. She had an extremely difficult year at school. This girl has been tested in fire and come out the other side with a smile on her face. She knows who her true friends are. She knows she has an inner strength that can get her through anything. I am hopeful that she's reached full height and that this is over, but if not ... we can handle it.
She just read this post and approved it for publication, as long as I tell you she has long, beautiful hair again. She does, it’s gorgeous.
She is one of the bravest people I have ever met. I am so proud to be her Mom. I know that some of the difficult things I’ve been through in my own life have only been to toughen me up enough to be able to fight for her rights. There are sometimes people who don’t understand, and who can be hurtful. We understand that this is usually just out of fear, but it doesn’t make it easier to take.
We have been blessed that most of the most of the people around us have been very understanding. If anyone ever had a question, Tall One or I would be happy to talk about it.
There is no shame here. God made her the way she is, and she is perfect.
Art, I DO write with my head held high. And my Tall One lives her life that way. I probably learned it from her.
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