Wednesday, May 24, 2006

Cursed by Family

I've said before that I love my job, and I do, but there are days that make me feel miserable, like I need a shower and a month long vacation.

Today was Mike's annual planning meeting, during which those people involved in his life get together to determine how we can best serve him over the next twelve months. Mike was born with Downs Syndrome and functions in the profoundly retarded range. He can't talk or process much information, and scoliosis has made it impossible for him to walk.

As if he hadn't already been kicked enough in life, he'd been institutionalized since birth. Let me be clear, the doctor attending Mike's delivery, with that great moral certitude that could only come from the 1950's, had decided that it would be too difficult for Mike's mother to behold his flawed body and had him removed to another part of the hospital, where he stayed until he could be moved to one of Maryland's institutions for people with developmental disabilities.

I've been to that institution numerous times for work: Most of it is abandoned, boarded-up buildings that look like they're waiting for the filming of Saw 3 to start. It's a notorious destination for ghost hunters. I get a lump in my throat when I think of Mike in one of those buildings, lying in a crib, yearning on some physiological level for comforting, not from a variety of nurses caring for who knows how many other children, but from two constant people who can and want to devote their time to him because they care, not because they get a paycheck for doing it. Probably because I'm a father and I couldn't imagine doing such a thing to my kids, no matter how disabled they might be.

"It was for the best, really. We were going overseas and we couldn't have cared for him."

That would be Mike's mother. She attends Mike's meetings more or less on a regular basis. She never talks to Mike, although everyone else on his treatment team does. She sometimes will drop off some presents for Mike and his housemates at Christmas, but she doesn't visit with him. Ever. I've tried to reach out to her and encourage her to visit more, take more of an interest, but she has artfully dodged every offer. It took me a year to get her to send Mike some pictures of his family. Mike's birthday is next week, and there's no question about whether his family will stop by or even send a card.

I found out today that Mike's father passed away last December. I have a sneaking suspicion his group home staff is going to tell me that they weren't told. I'm sure it's for the best that Mike not attend hid dad's funeral. How embarrassing for the rest of the family!

I dread having to make polite small talk with this woman every year, when what I want to do is grab her old lady shoulders and shake until her dentures rattle. This year, I had to listen to her talk about her other kids, who couldn't give a rat's ass about their brother either. (One of Mike's sisters came to his meeting a few years ago, and her fake sincerity made me sick. )

"I had two girls, then I had Mike...he was a big disappointment."

I let that statement hang there, rolled it on my tongue like a mouthful of wormwood. I weighed how important my job was and how much I wish I'd hit the Power Ball last week so I could say something like:

"How unfortunate...for you."


"I'm sure Mike's oh so happy with you, you ghastly fuck."

Or some other flippant rejoinder. Instead I looked down at my papers and wondered how there could possibly be a God.

"The doctor told me to wait six months and get pregnant again as soon as possible." Presumably to get this whole inconvenient event behind her. "A year later, I had another girl, my gift from God."

Kill me. There can't possibly be justice when I, who see Mike maybe three times a year, care for him more than the woman who bore him.

And then this evil person, this soulless bitch, looks at me and asks: "Chris, do you ever get discouraged?"

"No," the responsible part of me says out loud. "In fact, I've had several success stories just this year."

But the lottery winner in my head continues to speak truth: "Only when I talk to you."


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