Okay, I caved and did it.
Why am I writing an entry for Adelle? Well, first, when we started out on this journey, my sister suggested I make a guest appearance on Adelle’s blog. I initially balked at this idea, but now think it is not such a bad one. Second, I think some others that are out there wonder what it is like for the parent who is not the one who is at increased risk, and because of the physically obvious nature of being pregnant, carrying the burden of telling people why you are off work “already” and how everything is all the time. Lastly, because here in Canada, November 1-7 is National Down Syndrome Awareness Week. While it looks like we may be having our baby in the very near future, Adelle has decided she doesn’t want to put pressure on herself to blog each day, but at least we can get a good start to the week and have a post ready (For those of you on Twitter, @CdnDownSyndrome, #SeeTheAbility).
So what has it been like?
When we first found out that our baby girl was going to be born with Down syndrome, of course I was shocked—that appointment with the genetic counselor/high-risk OB/GYN and eventually the social worker was one of the longest, most exhausting days of my life. I will never forget it, but I can hardly remember any of it. As the tornado of information whipped through my brain I found myself getting way ahead, “school, university, independent living” were all in the forefront of my mind, and I also worried about how this would affect Ariel. Thoughts raced through and were gone in seconds until the social worker slowed us down. She told us to focus on the baby and take it day by day. Wisdom that has served us well ever since.
Forty-seven chromosomes. A superbaby—awesome!
Adopting this attitude was imperative early on; we needed to come together to embrace what all this would mean for us, for our family. I have to say, adopting a positive attitude is a lot easier when you are married to Adelle. She lives her life with intensity, a subject I tease her about regularly, but it’s an intensity you get caught up in and it is wonderful. Did she cry a little? Yes. Did she have doubts? Sure. But I never doubted her for a second; I knew right from that first appointment, that I was married to the most perfect candidate for the job. So my life has been a lot simpler.
So life went on, with our healthy superbaby baking in the oven. Not being pregnant, it was not always top of mind for me as I carried on my daily life. Commuting, working, playing with Ariel, was all the same for me; life went on. I think that actually helped me too. Life did go on. As we started sharing our news with people everything began to feel a lot more real. At first it was a little hard telling people, but it got easier. I think what made it hard was that you don’t know what kind of reaction you expect or want so there is always the possibility of being disappointed. That never happened; everyone was very supportive and caring. And importantly, our healthy baby was going to be born with Down syndrome, but that was okay, she was healthy.
Until she wasn’t. Which was the news we received at our next appointment. The presence of the “double bubble” was something we were aware could happen, but it wasn’t clear what the implications of this were. Amniotic fluid has never been so scary. That appointment was hard. Really hard. It made us very nervous and Adelle decided she was done with work and I agreed, she didn’t need any more to deal with and that was that. Since then, we learned about the surgery our baby would need, met high-risk OBs, and met the neonatologist, more OBs, pediatric surgeons and more OBs. It is not their fault, but it feels like a roller coaster, one appointment things are okay, the next something is not quite right and the monitoring escalates. There is a part of me that can’t wait for this pregnancy to be done, and to meet our little troublemaker, but I know she is better off on the inside, for now.
Down syndrome, but healthy. Needs surgery, but heart looks good. Blood flow restricted, but no signs of stress. Signs of stress, but only some, and some tests look okay. It doesn’t take a high-risk obstetrician to figure out that in the very near future, one of these visits will demand intervention sooner rather than later. Oh, and babies with Down syndrome have a 10 percent stillborn rate. The doctors just throw that out there like it’s some neat fact about a small town USA. Did you know that Battlecreek, Michigan is home to the world’s largest breakfast table? Neat stuff, eh?
Needless to say, our interaction with the staff at McMaster has been wonderful to date and I can’t really complain about much. But that stat was mentioned to us in our first two or three appointments, and was done so casually and never addressed since. And it burns away inside. So yes, I am ready for Adelle to go into labour, even a little early, because I want to meet my superbaby, no matter what.
I am still in the midst of telling many people what our family has been going through the past few months and people often remark that we seem calm and at ease with everything. And we are for the most part. Thanks to Adelle.
So, I am writing this blog for Adelle, who has pushed our family through these tough times. She used her family, friends, and the blogosphere to create a network of support for us and it has been amazing. When we found out our child would be born with Down syndrome and the associated medical problems, many people reached out and told us that we were the perfect parents for the job. I guess they knew her as well as I did, because Adelle is perfect for this; she will educate and inspire all those she comes in contact with and I love her for it.