Wednesday, August 6, 2008
warning: venting ahead!
You'd think Mas could have been blessed with a well-functioning body, wouldn't you? I mean, isn't it enough that his brain is damaged; does his body have to be, too? Mas had a bad bout of constipation yesterday, prompting his school to think he was just having bad behaviors, and reminding me to let them know that when you can't speak, you will do what you can to let people know you are hurting, such as pull hair, throw things, lie on the floor, and cry. This is all my own fault, since I didn't adequately prep #7, (Mas's newest teacher) about all of Mas's idiosyncracies. I sometimes wonder how things get doled out upstairs. Let's just say Mas was unable to speak. That would be one huge problem. Then, let's say his brain connections didn't form correctly, his ventricles inside the brain are enlarged, and particular areas of the brain are just never going to function correctly. Now, add to that feet that have extreme pronation (they turn in), hips that still click from bilateral hip dysplasia, bowels that don't function as well as they should, a heart murmur, inability to gain much weight, hands that he just realized were there when he was about 5 years old, skin on his hands that cracks and bleeds because he is constantly putting them in his mouth, mild hearing loss in one ear, mild vision abnormalities, drooling, the list goes on. And on. These are the types of things I would like to be able to talk to God about. Wouldn't a couple of these things be enough? Maybe you could throw Mas a bone and ease up on some of this. I know I would be more than happy to take over some of his troubles. I know it seems pitiful, but it does beg the question, what did Mas do to deserve all this? It seems he started out a pure little soul who did not ask for any of this. I do wish there were something coming his way to balance all of this out....such as, the ability to tell people on his augmentative communication device that he is hurting, and where. These are the types of things that parents of "normal" kiddos take for granted. And rightly so. It's hard to imagine parenting a child who basically has to act feral to let you know he is in pain. It's not normal or right. Okay, I'll get off my soapbox now. :o) It's just, sometimes it would be nice to be able to ask The Big Guy some questions, and have them answered. That's all I'm asking! Tomorrow I'll probably post about how lucky we are, and I'll mean it. I know we are very fortunate to have Mas be able to do the things that he can, and to be as healthy as he is. Even when your child is special needs, though, you still want more for them. I think it's just a normal response by a parent that seems so twisted when taken in context. I'm done. I promise happy flower pictures and deep visions about growing plants tomorrow! HAHA!