I’m having one of those days when I hate Down syndrome.
Because of the DS, we have to take Evan to several different doctors: his regular pediatrician for well-checks, a cardiologist for follow-ups after his heart surgery (now only every two years…yay!), a geneticist for…well, I don’t know what exactly, but I guess it’s a well-check of sorts, an opthamologist for yearly checkups, and an endocrinologist for yearly checkups as well. We’ve been really fortunate that, aside from the heart defect which was repaired over two years ago and is now just a distant memory, Evan has been very healthy. His first year, it seemed like we had a doctor’s appointment every week or two, and if I thought about it too much, it would get really overwhelming, and scary. But after that first year or so, there haven’t been many, and they’ve been spaced out enough that it’s just not been a big deal.
Today, though, it was the endocrinologist, to check his growth and thyroid function. He’s not had a problem with this in the past, and the nurse practitioner we saw today (we never saw the actual doctor, which I guess is a good thing) was pleased with his growth, and doesn’t anticipate that there will be a problem with his test results. After she checked him out, we were sent to the lab to have blood drawn.
I had to hold Evan down, while one nurse held his arm and the other (nurse? phlebotomist?) did the draw. He was whimpering before she even got started, which threw me off because really he hasn’t had blood taken all that often, and it’s been over a year (other than a finger stick at the pedi) so I’m surprised he remembered it. Anyway, she stuck him (on the first try, fortunately) and he let out this bloodcurdling scream and continued to scream and try to flail around and was yelling “No! Stop it!” over and over and over. And he’s crying, and his nose is running all over the place, and he’s saying “Mommy, Mommy” and I just wanted to take him and run from that place, far away from needles and nurses and places where kids who are otherwise healthy are put through this over and over again just because they have one stupid extra chromosome.
I’m sure it’s not PC to say these things, especially during Down Syndrome Awareness Month. Yes, I’m aware of all the amazing things about my kid with DS, and how much I love him, and am reminded of all of this on a daily basis. But I’m also reminded of how that extra chromosome complicates our lives, and how there’s all this extra stuff floating out there, and how sometimes, that little bit of extra just hurts.