Thursday, September 10, 2009


Over the phone, a long distance connection, I told my father that the baby I was carrying, my third and last, most probably had Down syndrome.

His response was simple and heavy. “That stinks,” he said. I felt his words, the weight of his disappointment with a hint of frustration, the kind a parent suffers when they can’t fix your boo boo for you. So much wrapped up tightly in those two words. I cried and cried. Not because he said it, but because I felt it so strongly. It did stink. In fact, it sucked.

When my baby’s body came bursting out of mine and popped to the surface of the water into my waiting arms, I saw it. There was a chunky roll on the back of the neck. “Down syndrome,” it whispered to me. Two words. I did not cry when I heard them.

I refused to cry in front of the strangers who put ointment in her eyes and vacuumed out her nose. Strangers who pretended not to see what could not be missed.

My husband was snapping pictures. Over and over I heard the clicking. It was his job and he did it well. There were so many pictures... but they all said the same thing... Down syndrome. I grew tired and sad looking at them.

More and more pictures were taken but that tiny voice would not be silenced. I could not email these pictures to friends and family. They all knew of course but they had not seen. There is a difference.

Eventually I got a couple of shots that were hushed. By then I was distracted by other worries. Would she find the strength to eat and come home? Days rolled together into weeks and her body weakened. The neonatologist put her on a fluid restricted diet and started pumping lasix, a diuretic, into her. She did not gain weight.

What do you say when you first see someone’s new baby who has Down syndrome? Aside from the standard platitudes there was the surprising, “She doesn’t look like it.” I didn’t know how to take that. I didn’t want her to look like it I suppose... after all, isn’t that why I took one hundred pictures to get one that I could send around? But hearing that upset me.

Over the weeks I realized why. The less she looked like it, the closer she came to dying. She was in an induced failure to thrive, fighting blood sepsis and meningitis, and chugging along on a broken heart and a constricted aorta. The space where the long gone fat roll had occupied now whispered, “I'm dying.”

I could have let her die. In my heart and mind, I could have let her go. But I did not. Day after day I watched over this tiny stranger who was my baby and prayed for her to live. I’ll take the fat roll and the different looking pictures. I’ll take the Down syndrome. I’ll take it all, just give me my baby alive.

She is who she is. Now I see that. Now I accept that. And guess what? It doesn’t stink. Nope, it doesn’t stink at all.


Jennifer @ said...

I appreciate your honesty. You open up these private places in your own heart, and it makes me look deeper into mine, too.

What an incredible post this is.

Anne Lang Bundy said...

What do you say when you first see someone’s new baby who has Down syndrome?

I'm not sure I really see the Down syndrome as striking, because I first see the child. In the Down snydrome I see that God has chosen a special person to parent this special child, and believe there must be an extra measure of grace at work.

So what do I say? Well some babies are beautiful and some aren't, but they're ALL cute. So if they're beautiful I say so, and if they're not I say, "Awww. What a cute baby!"

That is one BEAUTIFUL baby you've got. I'm talking beauty contest beautiful. Thanks for being so generous with the pictures.

Anonymous said...

Wow- incredibly honest and heartbreaking post- both for the fear and the love. I'm so sad that you had a traumatic time and no understanding professional to help.

Megan Willome said...

Thank you for sharing. Have you by chance seen the documentary, "Praying With Lior"? It's about an Orthodox Jewish boy who has Down Syndrome. The film chronicles him as he prepares to celebrate his bar mitzvah.

TUC said...

Megan, Thanks for telling me about that film. I watched the trailer and it looks wonderful. I will order a copy of the dvd since there are no screenings near me.

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