I Ache

My son is sick again. My heart aches for him. Last Thursday he landed in the Emergency Department at one of the two medical kingdoms we have around here. He was checking in with the transplant team because his kidneys are failing and he’s going to need a transplant eventually. They found that his pulse was running away so they trotted him to the ED to be checked out. There were no answers. I found out later that ED docs are notoriously bad at diagnosing heart rhythm problems – gee thanks.

Then the next day he came down with a horrible chest cold and he’s been lying on my sofa hacking like a prisoner sawing out of jail. My ache for him is now 25 years old and there are more than just the medical issues. He wants to be like me so much but he can’t read. He couldn’t graduate from High School so he can’t get any college, He can’t be a cop, he can’t do anything that I’ve done because a couple of genes got screwed up when he was baking in the oven. It seems like all he can do is take care of his medical woes and defend himself from discrimination – both perceived and real.

Even his current employer who specialzes in providing services for developentally disabled people seems to take advantage of him. I want to haul my self down there and take a few folks up by the shirt collar but I can’t do that. What will he do when I’m too old or dead? He has to manage this himself. Dottie and I’ve worked and worked to get him to that place.

My heart aches all over again when I’m with other parents who have developmentaly disabled children. I look into they’re faces and see mine. Sometimes I’m staggered by their problems because they face more than we did. I want to give them everything I’ve got to see them through. But what happens after I’m too old or dead? One time a mother, who became angry at my agency, said that she wasn’t going to depend on us as much in the future. I said, “That’s a good thing.” I meant it. Her family and her children should be able to make their way without dependence on one agency. Rusty should be able to live as best he can so that he can have some of the dignity afforded able-bodied people. I purposely ignore some of his needs so that he’ll figure things out for himself. It kills me to do that and when I tried to relay some information to him that I found out about heart rhythms, he looked skeptical. I want to call his doc before he gets there tomorrow and fill her in but – he didn’t ask me to and I want him to have his manhood. In the mean time, I ache.