The Stupid Question

Journal Entry February 17, 2005

Yesterday Niko had another heart echo. They really wanted to take a good look, so they sedated him with an oral anesthetic, and he was out for about half an hour. No change from his last echo in December, which could be considered good OR bad. Let's see...how should I consider it? Let's try it this way. I choose GOOD!!! Since he is bigger (24 pounds 6 oz) the cardiologist upped his propranolol dose to 3ML three times a day instead of 2ML three times a day. Ferrous sulfate and zantac still the same. Last week he went two days without zantac, and started throwing up again. I guess it's good to know that the medicine is working. He's developing quite the personality, my little Niko-freak. He laughs all of the time now. He is also the fastest crawler known to mankind...complete strangers will remark on it. Come to think of it, complete strangers remark on him all of the time. Good things, bad things. How cute he is, how a child his age should be walking. How wonderful to see such a friendly little boy, how a child his age should not be drinking formula. "Yes, yes," I think. "I'll just give him some milk to satisfy your ego, you curious stranger. It will just KILL HIM." Usually, I am very polite. Sometimes, however, I am not.

The worst time was about a year or so ago. Niko and I were in line at Costco, and Niko was sitting in the cart smiling and shaking his head back and forth, probably to make his curls bounce. This woman standing next to me turns and says, "Is your child retarded?"

Well.

About a year ago, if you remember, Self, we were just coming out of kidney failure. Williams was pretty new to us. I was overwhelmed all of the time. I turned to that woman, and I just told her what she had wanted to know. I told her about having a new baby, who was born sick, and how long it was before I could hold him. We were living away from our family, and then we took our four month old and moved to Finland for a semester abroad. I told her how my husband spent all day in school and how I was in a concrete, unfurnished apartment sitting on a sleeping bag with a baby who screamed all day and all night, and clawed at his face until he bled because something was wrong and we didn't know what. I told her that as soon as we hit America we took him to a doctor where they did test after test after test, and finally it was determined that his severe heart problems, among other things, pointed toward a strange thing called WILLIAMS SYNDROME. And how after even more testing, it was determined that this unusual syndrome was, indeed what my son had. I mentioned that Williams had masses of things associated with it, like the famous "cocktail personality", the hypercalcemia, the facial features, the cognition, the musical and language aspect...and yes, I said, there is some retardation that usually occurs, of varying severity. So, yes, there is that possibilty. Thank you very much for bringing it up in such a sensitive manner in such an appropriate place. Also, I said, you're very lucky that you mentioned such a thing to me, because I am an unusually nice person. Anybody else would have gotten very, very offended and angry with such a stupid, stupid question. My voice was very calm, but I'm sure my eyes were on fire. I could have burned her to the ground with my eyes.

Well.

She didn't say anything, just moved her cart to a line a few lanes away. I stood there for a second, then smiled at Niko who was grinning and still shaking his curls.

Well.