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Learning From Liam

Remembering Aidan

Being pregnant wasn't just stressful from a daily-life standpoint. At 41, I was well into the "advanced maternal age" category, and there were risks, which the genetic counselor was only too happy to spell out for me: 1 in 60 risk of Down syndrome, 1 in 30 risk of genetic problems overall. And we had an added concern, because we'd already had a child with a genetic problem. Aidan, our third child, was born in 1995 with Miller-Dieker syndrome (MDS), a severe brain malformation. He was very disabled -- his development never got past that of a 1-month-old -- and had terrible seizures, as well as feeding and breathing problems; he died of pneumonia ten days after his first birthday. Although the chances of it happening again were quite small, when I got pregnant afterward with Elsa and then Natasha, we did prenatal testing for MDS. I didn't want to make my children watch another sibling die. Both times, it was excruciating to wait for the results of the testing and try not to bond with the pregnancy, but it had felt like the right thing to do. So now I made an appointment for chorionic villus sampling, kept the pregnancy secret, and settled in to wait.

In that waiting, I found myself remembering Aidan. I always remember him -- I think of him every day -- but this was different, stronger. I remembered the smell of him after a bath. I remembered the weight of him in my arms. I remembered the softness of his hair, the deep chocolate of his eyes, the way his far-too-rare smiles lit his face?and I missed him, more than I'd missed him in years. The timing was eerie; I was due in September, ten years since the October of Aidan's birth, in that fall season when I always feel sad and vulnerable, and suffer most for the loss of my baby. A meant-to-be-ness stirred.

And in that remembering, I found myself less afraid. Yes, I wanted a genetically normal child. But we'd lived through having a terribly disabled child, and we were okay -- we were more than okay. Because of Aidan we were stronger, gentler, more loving people.

I felt certain that the life inside me was strong and healthy. I had no sense of whether it was genetically normal, but for the first time since I started having babies, I didn't care. I watched the little boy in our neighborhood with Down syndrome, who is also named Aidan, at the schoolyard and in church; I was struck, as I've always been, by his joy and by the way he makes everyone around him smile. Lives like these are blessings, not something I needed to fear or protect my children from. It had taken me some time to fully understand this, and I don't know that I would ever have seen it so clearly had I not had to make a decision about prenatal testing again.

I went to Mark and told him I didn't want to do the testing. I wanted an ultrasound later, so we'd be ready for whatever the baby might need, but I didn't need, or want, anything else. Mark was overjoyed. He'd never wanted to do it, it turned out; he'd just agreed to it for me.

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