Thursday, March 26, 2009

Pain Is Beauty

It's ironic how stories of human pain and tragedy can be made so beautiful when the experiences described are always so ugly and sad.

My biggest fear while K was pregnant, and even through the first year of my son's development, was not that he'd be born with some physical disability. I'd always thought the cliche uttered after every birth, "At least he has all of his fingers and toes," completely missed the mark. I could get over my son having had some physical deformity. True, I'm glad he's physically healthy and actually a little advanced for his age in some areas of physical development, but had things turned out differently, I would have adjusted easily. In our society, a broken body doesn't really limit your future so much. Just look at Stephen Hawking. For me, the fear was always that something would be wrong with his brain.

It's probably partly because my intelligence is so firmly entrenched as the main component of my sense of self. I can see myself being able to deal with loss of limbs or paralysis. My physical abilities have never really been a big part of who I am. The idea of not having full use of my brain, on the other hand, is terrifying, much more so than death for me, and the the biggest of these limitations I feared with my son was autism. It runs in my family. One of my mom's cousins was diagnosed late in life with a high-functioning version and another, closer, relative on my mom's side shows signs of it as well, although she's never been diagnosed.

Luckily, E doesn't seem to show any signs of even the mildest forms of the disorder. He's not compulsive and his interests are eclectic and appropriate for a child his age. Months ago he started getting a little upset and saying, "sad" whenever someone in person, on television, or in a book looked depressed. He loves to share his snacks with us and giggles at jokes he can't understand just because K and I laughed first. Already, two months before he turns 2, he can empathize with others and he picks up social and language skills quickly. This makes that dread that lingered within for almost two years slowly dissipate.

But it also makes stories like the one linked above resonate even more strongly.


Julie said...

Yeah... the idea of having an autistic child is truly frightening. I don't know if I could handle it.

JustinS said...

We had a legit scare when Ani was in utero.

A routine ultrasound found a couple of pockets of fluid in the back of her skull, a symptom that's been connected with birth defect called Trisomy 18 ( Essentially, the kid has an extra 18th chromosome and it causes bad things to happen.

So the ultrasound tech made us go to a fancy pants clinic for high risk pregnancies. Apparently, the super duper ultrasound machines are better able to detect certain other symptoms of Trisomy 18, so they wanted a closer look.

Anyway, to make a super long story only moderately long, that ultrasound looked fine, but they told us that the only way to be certain was with an amniocentesis. But...

Problem with that is that they're known to cause miscarriages of even healthy babies, so we had the Catch-22: either spend the remaining 4 months wondering if Ani was going to be OK, or find out for certain but risk her life in the process.

In the end, we skipped the amnio Ani was and is perfect.

JustinS said...


That first paragraph makes it sound like Ani has Trisomy 18 ("Essentially, the kid has..."). I meant "Essentially, a kid with Trisomy 18 has...".

Also, the pockets of fluid? They disappeared while she was still in the womb. The pockets themselves are harmless, they've just noticed that kids born with Trisomy 18 tend to have them show up more often than kids without.

Chris said...

Damn. That is a really moving article. I should be working now, but I couldn't stop reading it. Having experienced some gut-wrenching episodes of family mental illness myself, I can relate to what the author says about wishing the person's illness were something as "simple" as cancer.

We can all only hope and pray for a healthy child.