The News

I got the news over the phone from a genetic counselor. It had been 16 days since my amnio. I was starting wonder if they forgot to do anything with all that amniotic fluid they took so painfully from my belly, so I'd been calling throughout the day to see if the results were in. As it turned out, they weren't stalling. The genetic counselor had just called the lab because she felt the results were taking a long time, too. The test had actually only been completed the night before. I was expecting mostly good news, like we'd received for my daughter (codename: Her Nibs). Her Nibs has a translocation, but it is balanced, and she is otherwise healthy. When the genetic counselor said she had the results and that they weren't good, I still didn't completely understand. Then she explained that our boy (current codename: Lizard Loaf) has the translocation and an extra chromosome 21. "He is predicted to have Down Syndrome," she said. I know I wasn't on the phone for very long after that, and I was grateful Her Nibs was distracted by a movie, or the Disney Channel or something. Right then, I only kept crying for a few minutes. I pulled myself together until my husband came home, when I gave him the news. That's when the wording started to seem significant. "Predicted." Could Down Syndrome be a prediction like the weather? Slightly translocated with a chance of Downs? Everyone was gone for the night, so clarifications would have to wait nearly 24 hours. Unfortunately, 'predicted' was just a misguided attempt to soften the blow. Lizard Loaf does have Down Syndrome. This is not a false positive. These are the correct test results, and lots of other terrifying things like pediatric cardiologist and echo-cardiogram.

I was devastated. Thank goodness the Celtics won that night, or it would have really been a bad day.

So, I've been processing this news for nearly a week now. Some days I cry a lot, but mostly I'm on a positive path. But now, how do I tell everyone else? It was only 3 weeks ago that we announced to our world-wide network of friends that I was pregnant and expecting a boy. That part really hasn't changed, but still: things aren't the same. I did multiple Google searches on variations of "announcing your child has down syndrome," trying to unearth some existing etiquette or guideline. Nothing. Maybe we shouldn't say anything at all, and just throw it in with the birth announcement when Lizard Loaf actually arrives? I'd already read too much on BeNotAfriad.net to really do that. When we are rejoicing in the blessing of another very long awaited child, the last thing I want to hear is "I am so, so sorry." But of course, I did have some guidelines. Two of my sisters had already sent similar messages. After working on the email for days now, I finally opted for quoting one of my sisters for a portion of the email. I'm actually still not done composing the message, but I got it far enough along to send it to a few important people (like my mother) who I felt should have the news soon. This is basically what I sent:

We already knew it was a boy; now we know something more. We recently learned that our baby boy, due in October, has Down Syndrome. It is hard news to hear. There is no question that this will be a challenging journey for our family, but we are letting go of generic hopes and embracing new possibilities. As our expectations for our son grow from obscure to intimate, our love for him deepens.

As we do with every new adventure we face, we're scouring the web to learn all we can. We've discovered some amazing resources, both for us and our son. (Sometimes, the Internet can be so full of love.) There is a huge range of health and ability among people with Down Syndrome, and it will likely be years before we can tell where our son is on that spectrum. As my sister said recently, "It's a relief to know a little more and digest this new information incrementally. ... I wanted you to have a chance to digest the information incrementally, too."

Several years ago, SumGreater, gave birth to a little girl with Down Syndrome. Due to complications from the pregnancy, her daughter passed away after only 9 days. On the same day we learned 'something more' about our son, we found out that one of my other sister's 6-month old daughter may also have a form of Down Syndrome. Would you ever have believed three sisters in one family with children that have Down Syndrome? A circumstance like that deserves its own blog: http://imdownwithdowns.blogspot.com/