I finished reading House Rules by Jodi Picoult - a story about Jacob, a teenager with Asperger's syndrome, who was accused of murder. It's fairly predictable and very Picoult-ish, but not bad. I knew absolutely nothing about Asperger's before I started reading, so that side of the story was most interesting to me. Knowing Picoult's tendency for thorough research, I suspect the description is pretty accurate.
House Rules would have been just another book though, if not for one thing: I can relate to Theo, Jacob's brother, because I, too, have a sibling with an incurable decease.
My younger sister has the most common form of cerebral palsy - spastic diplegia. Now that she is 24, you can only tell that she walks a little funny if you pay close attention (the mild form of scissor gait - she still doesn't straighten her legs all the way, even though she can). The rest of the issues can easily be taken for personal quirks. It hasn't always been this way though. The reason my sister walks, talks, has a high school diploma, a junior college diploma, and a book-keeping job at a small firm is that my parents fought very hard.
Lu was a normal baby. And then, when she was a toddler (2?), she suffered from some sort of virus, which left her suddenly not quite normal. We all weren't quite normal after that. It was not until she was 3 that Lu was finally diagnosed with CP. At that point she could hardly walk or talk. So my parents sprang into action.
I wasn't exactly forgotten or left behind, but I wasn't getting equal attention either. Much of it can be summed up in a sentence my mom wrote to me a couple of years ago. She said, "I hope you will never have to choose between trying to cure one child and trying to give the other one an education." My mom was not there when I started 1st grade, even though it's a huge deal in Russia. She and Lu just left for their 1st (out of 4) trip to Kaluga - a city a mere 140 miles away, that took about 8 hours to get to, because there was no direct train. That first time they were gone for 4 months. The next three years they went for 3-month-long trips. My Dad & I lived together, with Grammy helping us out. He had to learn to braid my waist-long hair. I had to learn to live without my mother. By the time I was 9, I spent over a year of my life away from her. However, it was in a therapeutic center in Kaluga where my sister said her first sentence: The goat eats grass. It made Mom cry.
I grew up with double standards for admissible behavior and achievements. That was never fun. I guess it happens in every family to a degree (after all, I see "younger sibling syndrome" symptoms in both Lu and Linc), but it's taken to a whole new level when one of the kids has a disability. I came out of it all with a very strong sense of independence pathetically mixed with a deep desire to be taken care of.
I don't blame my parents - they didn't really have a choice. They were heroes who found new treatments and did homework with Lu every single day for 11 years. The only reason they stopped was because she didn't have homework in college. They loved me and gave me what they could - what was left of their time and energy. It is because of them that I devour books, speak English, and know most of what I know about world's best pieces of art and architecture.
I've been angry and bitter for years. Now those feelings are gone, or at least suppressed, and only show their ugly heads at the worst moments of self-pity. There is a certain sadness though. For talks that never happened. For friendships that never developed.
So here comes the actual confession: as much as I want kids, I am terrified of having a child with a disability. Not that anyone exactly looks forward to hearing "your boy will never walk" or "your girl will always stay at a mental level of a 3-y.o.", of course not. But I am truly terrified of doing it all again, only this time as a parent. I am terrified of subjecting another person to being a sibling of a disabled child, because I know what it's like.
It's true that not everyone has the same experience. There are angels among us. My best friend, though, whose younger brother also has CP, will agree with every single word in this post. It's good to know I'm not the only one.
Lu, by the way, has a cutest 5-month-old boy who is perfectly healthy. We just hope is stays that way.