At 5:00, my oldest daughter Penny finds me in bed. Cough drop wrappers, a used tea bag, and Dayquil packets surround me. "Come on up, sweetie," I say, and she climbs in next to me.
She has brought her spelling book. Her second grade assignment this week involves ten plural words. As she spells each one, I think about how much work it takes for her to form each letter. An occupational therapist has worked with her on her fine motor skills since she was a baby, and those words testify to hours and hours of practice, from the straight crayon lines on white paper as a toddler to today's careful, precise strokes of the pencil. I love our daughter. I am very proud of her. She has Down syndrome.
We finish the spelling assignment, and I lean back on the pillows, sniffly and hoarse. I say, "Tell me about your day, Pen."
She is wearing a polka-dotted sweater and a purple skirt with white leggings. She has just gotten her hair cut, and she tucks a wayward strand behind her ear, behind her pink glasses. "I'll tell you about mine if you tell me yours first."
And so I tell her. I tell her about being sick, but I also tell her that I've been thinking about a test that can tell pregnant women if their baby has Down syndrome or not.
She looks up at me. "Tell them, 'Don't be scared,' Mom."
I meet her eye. I know she is thinking about her own birth story, about the fear that her dad and I experienced when we first heard her diagnosis.
"Tell them, 'You don't need to worry.'"
I put my arm around her and kiss her on the top of her head.
I think about the different posts I had been considering related to this topic:
- The post that would detail the problems with the language doctors, researchers, and the media use to portray Down syndrome and other chromosomal conditions
- The post I have written in my head titled "Defending my Daughter's Life" and the weariness I feel in writing about it yet again
- The post that articulates the concerns I feel for pregnant women who don't know how to approach these tests or the information they provide
- The post filled with indignation towards the companies who market these tests with false advertising, claiming they are 99% accurate when this recent study shows them accurate 42% of the time
- The post expressing my anger towards our government for funding prenatal testing research but not funding information and resources for doctors and expectant parents to know more about these conditions before making a decision about abortion.
But instead of writing any of these, I talk with my daughter:
"Pen, what would you tell a mom who just found out her baby has Down syndrome?" I ask.
And she says it again, "Don't be scared."
"Do you have a happy life?"
She giggles, as if I have asked a silly question. "Yes."
"What makes it happy?"
"I'm flexible. Friends. Power point. My family. My grandmother and grandpa." (Explanatory note: Down syndrome usually means low muscle tone, which has a side-benefit of flexibility. Penny is working on a power point presentation in school.)
"Is there anything that makes your life sad?"
"Nothing at all." She considers for a moment. "Only thunder and lightning. I do not like that."
"Is there anything hard in your life?"
I remind her that she had to go to the hospital on Monday to get tubes in her ears for the fifth time.
"Well, getting tubes in my ears is hard."
"Was it hardest before the surgery or after the surgery?"
"Hardest before. I was nervous."
"Is there anything at school that is hard for you?"
"Staying in the room. Controlling my hands."
"What's your favorite part of school?"
"The whole day. Reading. Dr. Seuss' birthday."
"What is your favorite book?"
"What is your favorite music?"
"What do you know about God?"
"Oo, good question. He makes people. He gives us our lives."
"Do you ever talk to God?"
"I pray. Like when thunderstorms are here. I actually did pray when I had tubes and for them to take out the IV."
Then she writes me a note:
"Dear Mom and Amy Julia. Feel better in the morning and reley feel asbutlutley better."
And I think again how grateful I am to have this child. I wish I could reach out, through the airwaves, through all the embedded and implicit assumptions that her life is a difficult one, that it is a burden to have her with us, that her life is less purposeful or valuable or good than typically-developing children. I wish I could reach out with her smiles and hugs and hard work and contentment and her good life, to every woman facing a prenatal diagnosis of Down syndrome.
I suppose this post is my attempt to reach out, not with arguments or coercive measures but with Penny's simple admonition: "Don't be scared. You don't need to worry."