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World Down Syndrome day is this Friday, March 21st. (You can read more about WDSD here: http://www.worlddownsyndromeday.org/) In honor of this day, we have a guest post from Leah, who blogs about disability issues and her daughter (who has Ds) at Our Cora Bean.
This Time Around by Leah Thompson
My introduction to parenthood a little over three years ago went much differently than I’d planned. Although I did have my daughter Cora at home after a smooth and uneventful pregnancy, what happened next was shocking and frightening. It started with a surprise Down syndrome diagnosis, followed by a next-day rush to the hospital with a blue baby, where we learned of her extensive heart defect and early heart failure. Cora spent weeks in the NICU, followed by a couple months of heart-wrenching efforts to get her to eat and grow. But the hardest part was the pure and simple terror of possibly losing our new baby girl. We went through the motions as if in a fog, willing to do anything it took to get her to where she needed to be: simply alive. And that meant getting her through heart surgery.
In the trauma of the first months, and the euphoria that followed her successful open heart surgery, there wasn’t a great deal of focus on the fact that we had a new daughter with a disability. Much of our new lives were spent dancing around medical issues and appointments, ruling out one thing and diagnosing another, spending hours in therapies to help her “reach her potential,” and really, just getting to know our girl.
The most profound thing we learned was not medical terminology or the list of concerns, but just how simply wonderful this child was. She had us wrapped around her tiny little pudgy hands in no time at all, and somehow time just seems to intensify the joy that she brings.
But as much as I feel blessed beyond measure to have Cora in my life, there is no doubt that being her mother has brought me new perspectives, some of them a little less bright than I’d like. As I await the arrival of Cora’s new baby sister in a few short months, this pregnancy feels decidedly different. Gone is my former upbeat and entitled belief that everything will be easy and perfect. The concept of a healthy child free of life-threatening conditions feels more like a wonderful gift than something to simply expect. With my eyes now open to a population of people that in the past I had overlooked, I am so much more aware of the possibilities, some of them beautiful and others terrifying. And, in truth, I can’t quite shake free of that terror, because now I am intimately in touch with my own fear of loss.
But even with this new vulnerability, in many ways my fears have lessened. I no longer fear having a child with a disability. I am constantly fielding questions about whether we have done prenatal testing this time around, because the world seems to feel that the possibility of having another child with Down syndrome must be my worst nightmare. But that is not the case. My worst fear is not having my child at all. Early in this pregnancy I was adamantly opposed to testing, and had even worked up a defensive retort to answer the questions that I knew would come pouring in. I was convinced that by choosing to test I would be sending a message to the world and to myself that my daughter’s disability is something to fear, and that a person with a disability is of decidedly less value. And that is not a message I can support.
In the end, though, we did decide on limited testing. We realized that having the supports in place for the safe birth of my daughter is more important than my personal stance on upholding the value of a life with disability. Ruling out the most likely possible complications made me feel better about planning a second home birth, and seemed like a good way to begin to quiet the fears that come from my memories of Cora’s roughest moments.
Of course, finding out that our new baby does not have any trisomies (including Down syndrome) or any other obvious anatomical concerns does not provide any guarantees. I know that you cannot test for every possible concern, and that even if you could I wouldn’t want to. A diagnosis comes with a list of possible medical conditions, a million worries, and the opinions of many people who believe that your child is of limited value. But a diagnosis absolutely cannot define who a person will be, what will make their heart fill with joy or inspiration, or how much an interaction with them can brighten lives. There is so little that a test can really tell you. And there is no way that any test can show the value of a human life.
The only truth I know for sure is that having children is a leap of faith, and one that carries with it immeasurable love and joy, even as it also holds the possibility of deep heartache. There are no absolutes and nothing is known. As I prepare once again to open myself up to the vast unknown gift of parenting another child, I find myself snuggling the beautiful child on my lap and watching her kiss my growing belly. And it’s in those moments that I know that choosing both my girls is a choice I would make again and again.