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Friday, September 20, 2013

For the Parent who Just Received a Down Syndrome Diagnosis, on the Anniversary of our Own

Dear Fellow Warrior,

I don't know you, yet I feel that we are connected. I remember walking in your shoes and fearing for the future. I remember feeling so alone, then finding others who were experiencing the same emotions, and it helped me cope with the news that you are dealing with today. And so I write this letter in the hope that you find it. I write in the hope that you know you are not alone.
 
One year ago today, we received Quinn's Down syndrome diagnosis. I sat down in front of the computer and told the world our story in a post that makes me cringe when I read it now. In the year that's passed, I've had a chance to look back on those raw emotions and remind myself that I didn't know then what I know now. And most importantly, I hadn't met Quinn yet, whose very existence is my greatest accomplishment. He represents my courage in a time of doubt, patience in a time of chaos, and the unyielding strength of a tiny human that I took for granted.

Quinn's sweet face on the day we learned of his pleural effusion



But I didn't know this then. I was terrified, isolated, and grief-stricken. I found myself unable to celebrate this impending life, both out of fear and anger. I closed the nursery door and hid the baby clothes for months, embarrassed at myself in the process, but knowing that their very presence would send me into a tailspin of grief. I knew that I would love Quinn when he arrived, but this seemed so very far away from reality in the weeks following his diagnosis, and as time marched on, we faced new problems that made me fear becoming attached to someone who might not survive. I was an actor in those days, playing a role I remembered well from the time I was pregnant with Atticus. I knew how to answer the questions everyone loves to ask a pregnant woman: "It's a boy. He's due in January. He's my second." But those answers always felt like they deserved an asterisk at the end: "He has Down syndrome. The doctors found a pleural effusion. He might not make it." Of course, I never shared these footnotes. I gave the people what they wanted because no one knows how to reply to unexpected news like that. I joked and traded stories with other pregnant women while holding back a searing jealously because their baby would be "normal" and mine wouldn't; these women never had worst-case scenario conversations with their OBGYNs. While I was researching Early Childhood Intervention, Medicaid Waivers, and special needs preschools, these happy pregnant women were buying baby clothes and painting the nursery with stars in their eyes. I woke up at 3am almost every night, unable to fall back asleep because I was convinced I didn't have the skills to raise a child with special needs. In those months before Quinn was born, I was lost.