Claire was born on Wednesday, May 18. The birth of a child is typically one of the happiest days of your life. This was no exception; I'd been dreaming of a little girl for half of my life. May 19, however, was arguably one of the worst. When the pediatrician working that day made her morning rounds, she oh so nonchalantly brought up that she thought Claire exhibited signs of Down's Syndrome and should immediately have blood drawn for genetic testing. Mind you, Tobias had taken Wesley to school, so I was on my own during this conversation. Apparently--and I didn't know this then, but my self-education on DS increased tenfold over the past two weeks--there are multiple indicators that don't include facial features. Alone, these traits don't mean anything, but when combined, they could mean Down's. The reasons for wanting to test Claire included a sandal gap in both sets of toes, crooked pinkies, almond shaped eyes, tongue thrust, and an extra fold at the back of her neck. The test would take a week to two weeks to know anything for sure.
The first day was awful. First, I had to tell Tobias when he came back to the hospital what the doctor had said. I hope, for any of you, that you don't have to ever be the bearer of potentially terrible news like that. From the second the doctor left the room for the next 24 hours straight, I cried worse than I've ever cried in my adult life. Originally, we hadn't planned on telling anyone because we couldn't do anything and didn't want to worry anyone else. But when my mom stopped by to visit, I couldn't keep it together, so we told my parents. I didn't take any pictures that day. For those of you who follow me on Facebook, this in itself is noteworthy. I've chronicled my children's development and daily shenanigans dutifully since Wesley's birth almost three years ago. But I didn't that day. I wanted to keep her in a little box; I didn't want anyone to notice that something was amiss with our sweet little girl. Upon leaving us that evening, my mom told me to keep taking her pictures and dress her up to take her home the next day and photograph that because I'm never going to get that time back. So that's what we did.
Before we left the hospital, we saw three pediatricians and the lead RN in the nursery. All said that they saw enough indicators to warrant the testing. I didn't want to leave the hospital feeling defeated, so I asked what were positive signs we could hold onto for hope. I didn't test positive for DS during pregnancy and her strong heart and good muscle tone were the biggest strengths. We came home and tried to set out for as much normalcy as possible.
At her two day weight check, the doctor (a thirty-year veteran pediatrician) sent her over to the hospital to have blood drawn for a bilirubin check. Before heading across the street, I asked him for his opinion on her DS traits. He said he probably wouldn't have even noticed, had he not read that the test had been ordered in her chart. This was our first real sign of hope from a medical professional. I wanted to hold it tight, but at the same time, I was afraid I'd be let down even harder.
She ended up having to be in the hospital overnight for some tanning under the bili lights. While there, another pediatrician echoed what the last had. Both said they couldn't say anything for sure without test results, but they didn't see it. At her weight/bili check a few days later, another pediatrician said the same thing. All in all, we saw eight pediatricians in the first six days of her life, and they seemed pretty divided. However, the older she got, the less the doctors agreed with the initial reaction to test.
We got the news two days ago that her chromosomes show no signs of any of the types of DS. When I got the phone call, and who most people in this area would consider the lead doctor at the local peds practice was on the other end of the line, my heart sank. Why would someone important be calling, if it was good news? But it was. I cried again, but this time in relief.
There are so many things wrong with this situation that I wish I could change. We will never get those first eleven days back. Eleven days spent worrying and grieving and clinging to hope. I purposely ignored people's invitations to visit while trying to keep her in the little box devoid of opinions and sympathy. I questioned my own character; I'm a pretty liberal person and felt entirely out of place wanting something so badly to not be true for my child. I tried to say it wasn't about me, and it wasn't really, but truthfully, if Claire had DS, she'd be a happy child in her eyes. It was me who wanted a different kind of happiness for her. I'm sure most people would have had the same reaction; parents generally just want good health and happiness for their children. Not that I've ever disrespected parents of children with special needs, but I gained more insight and respect for them while trying to learn more about the lifestyle and health needs of a child with DS.* I also saw that there are lots of happy families full of fun and light, and even though health risks are greater for children with DS, many live much fuller lives than those who were born a few decades ago.
So. That's our last two weeks in a nutshell. The past two days have been entirely different than the first eleven. There's no longer the burden of the unknown. Now we can look at her without wondering what a test will reveal about her future. When we look at her now, all we see is who she is. Our little Claire Bear.
*For the record, someone directed us to a pretty good support group in the Triangle area http://www.triangledownsyndrome.org/ . If there's anyone you know who may need the info, share that site with them.
