Dear Amanda,
In the instant you said Down syndrome, you shattered our world into a thousand bright and beautiful pieces. I had labored, fast and furious, and in the chaos of her birth, with all of the noise, the oxygen, the vacuum, the frantic prayer to cry, baby girl, cry, there was then stillness. And quiet. And grasping for understanding.
I was not fully present when we first heard the words “Down syndrome.” I was in the final stages of labor, so very far from my husband and my baby. I overheard the words across that room – that giant, cavernous space. I pushed away from my bed and propped on my elbows, trying desperately to hear. My husband is not a good listener, you see. And he was there and I was not.
It felt nonchalant, the pronouncement. I often wonder if everyone in the room already knew and thought that we probably knew, too. We did not have time to process. In an odd turn of events, suddenly my mom was there and we were moving forward and there were tests to be done and then I was in my recovery room without a baby, listening to a genetic counselor tell us about how soon we would know for sure. “Look, I’m telling you she has it. There will be a blood test to confirm,” she told us, “and I’m going out of town, but my intern will call you.”
The first moments when a parent hears the words “Down syndrome” are jolting. The delivery of a diagnosis sets the tone for how those first weeks will go, how information will be processed – and in many cases, will have a profound impact on the life of that little baby. In that delivery room, in that moment, your relaxed and matter-of-fact proclamation made this diagnosis seem irrelevant – and it didn’t feel like it should be. Now, it seems that you were right, that Down syndrome is a distant second to Tessa and her personality and big, toothy grin. So I thank you for that. It is part of her, but is not her.
Every mother in the Down syndrome community, whether her child is two or sixty two, can tell her diagnosis story like it happened yesterday. Please help us make those stories powerful, not because they are devastating, but because they are positive. While our own diagnosis story is by no means grim, note that the guidelines published by the National Society of Genetic Counselors recommend telling both parents, together, at a time where information can be shared and processed appropriately. A balanced, open dialogue that includes current and relevant information about the potential of individuals with Down syndrome, as well as their influence on the family structure, can go a long way in changing perceptions about Down syndrome for families, as well as in our society as a whole.
You see, while our world seemed shattered on that day, with information and support from the Down Syndrome Diagnosis Network and our local groups, we have built those shattered, beautiful pieces into a life far more vibrant than we could ever have imagined. Your part in that story is etched into our hearts forever, and I invite you to join us in helping others start their journey surrounded by all the love and support that is available.
Thank you,
Maggie
To provide anonymous feedback to your physician regarding a Down syndrome diagnosis, please use the Down Syndrome Diagnosis Network’s Physician Feedback form, found at http://www.dsdiagnosisnetwork.org/feedback.
Connect with the Down Syndrome Diagnosis Network if you have a young child or are expecting a new little one with Down syndrome for information, connections and support. www.dsdiagnosisnetwork.org
Yo soy La Lay 