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.
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