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When I First Knew My Daughter Had Down Syndrome

image1 I think about the day Ava was born a lot.

I think about having contractions all night but still going to work in the morning. I work at a hospital, so I figured I’d be in right place. I think about calling my husband at work, telling him our baby girl was coming. He got caught in traffic and was so excited he called the police to ask for an escort. I think about the nurse checking me and telling me it was time to push. I think about the first time my OB-GYN placed my daughter on my chest and I saw her tiny little face and her red hair.

I think about the first time I knew that she had Down syndrome.

No one said anything. No longing stares or questionable glazes. Everyone held and cuddled this new precious life. I sat in my bed and quietly smiled, thinking in my head, “Does she? No, she can’t. But what if she does?” They took my baby and my husband to the nursery for her first bath. I was alone when my nurse came in to transfer me to my new room. As she was helping me into my wheelchair she said, “First we need to stop by the nursery, a neonatologist is there and has some concerns.” Here it comes. “About what?” I asked. “There are some concerns for Down syndrome,” she responded. At that point my whole world fell apart — or so it seemed at the time.

All of a sudden my world went from what kind of diapers to choose and pink onesies to possible holes in my baby’s heart and pulmonary hypertension. My visions of taking my little girl to get her nails painted and helping her pick out her prom dress were taken away from me. In place of those dreams were fears of what was to come. We hadn’t prepared for this. What did we know about raising a baby with special needs? They didn’t write a chapter in my pregnancy book on this. If they did, I didn’t read it because this wasn’t suppose to happen to me.

I’ve wished so many times that I could go back to that moment. That I could go back and hold my own hand when I felt like my world was crumbling. That I could be there to tell myself and my husband that our baby doesn’t have all the health problems they first suspected. That she is an absolute joy and has been since the moment she was born. That our little girl does things in her own time, not when we want her to. That she can sing her ABC’s and count to ten. That she’s in an inclusive pre-k program and comes home every day talking about her friends. That she loves to have her nails painted and go shopping for pretty dresses. That she has more baby dolls than she can take care of but still tries to fit every single one in her Bitty Baby crib at night. That she loves with her whole heart and can light up your world with a smile.

That while she may not be what we expected, she was everything we wanted and could ever dream of. If I could, I would go back and tell myself, she makes your family whole.


The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.