My sister’s son is a disease overachiever: he has severe autism and cerebral palsy and a bonus pack of other maladies that affect various cognitive and motor abilities. Brian cannot eat, go to the bathroom, or take a bath by himself. It’s like he won the Special Kid Powerball.
He came to be because at the ripe old age of 21, my sister Valerie married her high school sweetheart. Naturally, they divorced 10 years later once they figured out who they actually were, but in the meantime, they’d had this adorable kid who’s a holy handful. Val’s ex is a good guy, but he remarried and has three kids of his own, one of whom has Down’s Syndrome; so, he has his hands full, and Val has essentially raised Brian by herself. And when you’re talking about a kid like Brian, that ain’t no small thing, chicken wing.
I’ve always felt like Val should be a comic book character – SuperMom, Wonder Woman’s slightly more exhausted older sister. Val works full-time and cares for Brian at morning and at night. The process of feeding him, bathing him, washing all his soiled linens and getting him ready for special school takes HOURS every day. Her days start at 5:30am and don’t end until she puts Brian to bed around 8:00pm.
Our dad now lives with her, and he helps care for Brian as well (heroically, I might add, for someone who’s freaking 89), but the bulk of the responsibility still falls on my sister. And even though I go home every three months to visit her and my dad, three or four weeks over the course of a year doesn’t exactly change the work equation for Val. Her drudgery continues, week in and week out, month after month, year after year, like some Sisyphean Mother Theresa.
Brian is, of course, a wonderful kid, as special kids inevitably are – a total bundle of love. And that definitely helps. But he’s currently in the hospital (for probably the 10th time), and my sister is there with him day and night. And while she keeps insisting that she can handle it, I know that all of this is wearing her down to a nub.
So, while I do absolutely believe in God (I’ve never been some nihilist who thinks this is all meaningless and then we die – that kind of attitude doesn’t exactly make you sparkle at parties), I have a big, fat beef with Him.
What is the meaning and the purpose of an endless life of servitude, one my sister undertakes simply because she’s kind and generous and loving? (She could long ago have shipped Brian off to a facility.) Why is her life so filled with tasks and traumas, when mine is not? She’s clearly the better person, so why did she get a Brian?
I don’t really know why I’m asking these questions; they won’t get answered. God seems to run the universe like a reality show: “The answer will be revealed…after the break.”
I guess I just have to believe that there will be a reward for her on the other side. I sure hope it’s a big one. I hope she gets to decide who gets into Heaven and who doesn’t. I can picture her, like that scene from History of the World, Part 1, where Madeline Kahn is walking down the row of naked Roman slaves, and going “No, no, no, no, no, no…” Then she reaches the Black guy. “YES.”