Choosing (a) Life
They said our baby would have Down's. We said we understood. We had no idea.
by Karen Dempsey
October 13, 2008
We told no one about the EIF. We barely spoke of it ourselves, and I managed not to think about it very much. I was consumed with caring for Brennan and working with a realtor to find our first house. When we finally found a place we wanted, in a neighboring city, I felt a sudden surge of panic: Should I have been researching services for special needs children in one school system versus another?
"If we knew that we were going to have a baby with Down syndrome," I asked John as we talked about the house, "would it change where we wanted to live?"
John looked back at me for a long moment. "If we have a baby with Down syndrome," he said, "It will change everything."
One sleepless night near the end of my pregnancy, I lay in bed with my heart racing, remembering that tiny star from the ultrasound. Were we kidding ourselves, pretending we could just take things as they came? I couldn't calm myself, though I was desperate to sleep. I tried relaxing by tightening and releasing the muscles of my body one by one, beginning at my toes. I should pray, I thought. I should pray for her. But what did that mean? She was there, fully formed inside of me. I could feel her knees and elbows, her stubborn round head. I didn't believe in a prayer that would change her genetic makeup; she had Down syndrome, or she didn't. And so what would I be asking for, a different baby? I'd already chosen to have this one. I finally found peace, and sleep, with the thought, She is who she is. Already, she is who she is, and she is mine.
As we made plans for who would care for Brennan while I was in the hospital, I spoke of the ultrasound again, to my sister Megan. "Listen," I said at the end of a long phone call. "I need to tell you something." I told her, because if the baby was born with Down syndrome, I wanted someone to be able to tell our families we had known it was a possibility, and that we had made peace with it.
We managed, but barely.
Liddy came into the world soon after, with myriad complications that did not include Down syndrome. She had a heart murmur caused by a congenital heart defect, swollen kidneys, an elevated white blood cell count (because she and I have conflicting blood types, which left her at risk for anemia), and a deep dimple at the base of her spine that required ultrasound monitoring and an MRI to rule out other complications. Though these issues required a great deal of monitoring, they would ultimately resolve themselves. But Liddy also has severe gastroesophogeal reflux disease, a condition that made it difficult for her to gain weight in her first years and left her vulnerable to breathing problems.
Because of the reflux, Liddy slept for only forty-five minutes or an hour at a time her first months of life. She couldn't tolerate the stroller, and her car seat made her more vulnerable to the reflux because it pressed her knees to her tender belly. She had to be kept straight and still for long periods after each feeding, and spent nearly all of her time in our arms. We lived our lives in thirty-minute increments — feeding, holding, soothing — while trying to manage Liddy's hospital visits and ever-changing prescriptions, and take care of her brother, who was not even two. We'd moved to a new neighborhood where we hadn't yet made friends. John worked long hours at a new job and came home to find me completely unraveled at the end of each day. And then we would begin the long night, taking shifts holding Liddy, hoping for a few desperate hours of sleep.
We managed, but barely. We missed our friends. We missed each other. We felt, for a very long time, very much alone.
An amniocentesis would not have predicted Liddy's complications, or prepared me for the realities of having a sick child. Caring for Liddy challenged my marriage, my family relationships, my friendships and my mental health — my very way of being in the world. John and I were naïve. We would learn, through Liddy, the awe-inspiring breadth of medicine's understanding, as well as the frustration and grief of its limitations — and of our own.
Liddy is now a feisty three-year-old who loves eating vanilla ice cream and wearing a monogrammed, pink-and-white-striped turtleneck that's two sizes too small. She bosses Brennan around and revels in the company of her imaginary cat, Julet.
Liddy still has reflux — she always will — but you would never know it to meet her, and it does not interfere with her eating or sleeping. Everything else has resolved itself.
She's healthy, with hard-won little rolls of fat at her knees and ankles.
She is who she is, and she is mine.
©2008 Karen Dempsey and Babble
About the Author
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Karen Dempsey's essays have appeared in Brain, Child magazine and The Buffalo News. She is writing a memoir about parenting a child with chronic medical needs. Read more of her work at kdempsey.com.
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