A couple of random thoughts:
1. I think the parents of every baby born in the United States, with Down syndrome, all receive the same book, Babies with Down Syndrome. It is not a bad guide, to all the medical issues you could face, accessing services, and how to deal with other people about it. I had read an earlier edition while I was pregnant, but we got the most recent edition at the hospital. When I skimmed over this copy (this was when David was about 4-5 days old), I noticed something I had not in the previous book, that aside from GI/heart/developmental/vision/hearing/etc that your kid may be at risk for, Down syndrome also affects their … teeth. Yep, even their teeth come in later, they may appear in a different order from other kids’ teeth, and they may be differently shaped (the term they used was, “pointy”).
When I read that, I closed the book and threw it across the room (this was at the weird little hospitality house where we stayed for a few weeks), and have not picked it up again since. The reason for thowing it, at the time, was that I could not bear to hear one single more thing that could be wrong with this kid. And I haven’t picked it up since because I think I already know most of what’s in it, so why bother?
2. Another wanting-to-throw-things moment had happened a day or so earlier, when David had to have an ultrasound to find out … wait for it … if he had a spleen. I mean, who doesn’t have a spleen, really? Well, I found out enough people that there is a term for it (shockingly, “asplenia”), and there are also enough folks who are born with more than one (you guessed it, “polysplenia”). And evidently when there is something big wrong with the heart, there is often associated weirdness in other systems. And for us grownups, a missing spleen is no big deal, but for a tiny sick baby it serves an important immune function. So he had the ultrasound, and he has a spleen (Matt’s response when I sent him this news via text message: “spleen-did!” which has effectively ruined the word splendid for me). I was sort of tense, I guess, when I was talking to Dr. Pulver about it, and I was talking a lot and really fast, and I said something to the effect that I just couldn’t hear about anything else he (David, not Dr. Pulver) might have wrong. I think I was ever-so-slightly hysterical, and Dr. Pulver paused, and looked at me, and said very gently, “Well … he has Down syndrome, you know. There’s going to be a lot of stuff that’s wrong.” (I am laughing semi-hysterically while I write this). I acknowledged that and said, “Okay, I just couldn’t handle anything else being wrong, today.”
3. Along with the book, we got this whole Down syndrome welcome kit – a tote bag, a trillion pamphlets, and an afghan and baby cap that matched. I have come to call this, the Down syndrome hat, and the pamphlets have mostly remained in the Down syndrome bag. A co-worker had a similar experience when she was diagnosed with breast cancer last year, except in her bag was a small teddy bear with a pink ribbon. It’s like, “Congraulations! You or a loved one has a serious medical condition! Have a tote bag!”
The goodie bag was given to us while we were waiting for the genetic testing results. As I’ve written before, there was a question based on David’s appearance, as to whether he had it. I had pretty much accepted that he did, even before the results came back. But what if it turned out your baby was healthy, and didn’t have Down syndrome? Is there a subsequent “sorry to have put you through this” welcome kit?
4. Having said all that, when are this little joker’s teeth going to come in? Even adjusting for his prematurity, Simon had several by this age. We’ve thought a couple different times they were on the horizon, but nothing so far.
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