Tuesday, August 28, 2007

in case you're worried

I promise I will not be posting every raw bit of journal-writing here. I just wanted to show myself that I had something going.

Something else
Sometimes, I admit, I watch TV with the kids when I am exhausted evenings. We watch cable stations, mostly--Animal Planet, Discovery Channel, TLC, Food Network, sometimes the movie channels when something appropriate is on (which is surprisingly rare). Last night we watched a program called Incredibly Small about Kenadie, a little girl who has a very rare condition called primordial dwarfism. She was a little over 2 pounds at birth and is still unbelievably tiny, delayed in language and other developmental areas, but very energetic. At three years old she was only half the size of her 18-month-old baby brother. One of the scariest things is the high risk of aneurism, which means that the life expectancy of an individual with this syndrome is very short.

I could tell that Bobby was immediately comparing her condition to Stella's. I made sure to remind him that Down syndrome is really common, and doctors know a lot about it. Stella's health is excellent, and she has every chance to live a long, full life. I remembered that one of our favorite shows to watch together has been Little People, Big World. Bobby really feels empathy, I think, with these families as they deal with difference in their lives.

I think about what a good thing it is for this bright young kid to be so aware of other people's challenges. But I also worry about my sensitive son and wonder what it will be like when the inevitable questions are posed--or even comments made--about his little sister. What will be do when his friends use the word "retarded" in jest, or call someone "Downsy"? How will he feel later, when he becomes more and more responsible for keeping track of her? When it goes beyond checking on her and coming back to me with, "Stella is naked in the bathroom, holding the toilet plunger"? When I'm not here to report to?

I know he is strong enough and smart enough to deal with anything that comes along, but it does make me sad sometimes.

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