It's finally quiet here. I appreciate my daughter watching Brian so I can go out, but that usually means I have to return the favor. I don't mind having N. here though. I just don't get much sleep when he is here. I sometimes just watch him sleep and I wonder what it will be like for him in the future. He had his new braces on today....they are smaller, just fitting over the ankles and not all the way up his shins anymore....but they are more rigid and seem like they are uncomfortable. They are "rainbow" colored. He gets to design them....I thought for sure they would be blue.
When Brian was born I used to sit up at night and watch him sleep too. I remember that overwhelming feeling of helplessness in the face of his disabilty. It's funny though....my sisters and I have had to deal with different disabilities with our kids. I have often thought I couldn't handle Adam's or Emily's medical issues....and they have said that they thought they couldn't handle Brian's mental retardation. Now I deal with both the mental....and physical issues. Granted, N.'s condition isn't an ongoing medical concern like Adam's or Emily's.....but I know his future is still uncertain. They still haven't pinpointed the nature of his muscle myopathy.
You want so badly to protect you kids from the difficulties in life but most things are out of your control. Being a single mother with someone like Brian is even tougher. I want to be the loving, protective mother....but I find myself having to be the "bad cop" most of the time to keep him motivated. I wish I had the opportunity to enjoy him more....to read to him more....to play with him more. But I am always pressed for time....and most times he can't be hurried....so I end up nagging and being firm with him. This has been a tough year for him. Actually it's been a tough year for me too....but I can't show weakness around him...I have to push harder. He's getting better at school though....the crying and acting out has slowed. And since the "Leapster incident" at least the teacher and I are on the same page now on how to handle things. He's so angry at me anymore...it's like how Erin was when her dad and I broke up. They blamed me ....mostly cause I was there. If it helps him though, I can take it. He "uninvited" me to his choral concert though the other night when I told him I didn't want him to make Steve a card. It hurts....but I have to turn it around....I told him fine...but how did he think he was going to get to the concert then? He is sooooo excited about this concert....I think he has invited everyone he knows (and even some people he doesn't know....like the cashier at Giant Eagle). I think the only two classes where we don't have any trouble are swimming and chorus......and he can't swim or sing!
That's the beauty of his innocence........life is so simple for him. It doesn't matter what anyone thinks of his ablity.....he likes it....it's fun.....so he goes for it with gusto.
That's also the heartbreak of his innocence........love is so simple for him. It doesn't matter how anyone else feels. If he loves you.....he goes for it with gusto.
We should all be so lucky to have that kind of "disability".
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