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The heart in the shadows

When I was pregnant with my Corrie, the doctors told us that she might have Down Syndrome or Trisomy 13. It wasn’t that she showed any clear symptoms, but more that she had certain traits which sometimes go along with these conditions. Modern technology and good insurance means you have to decide how much you want to know.

Spoiler for new readers: Corrie just turned 13 months old, and she has neither Down Syndrome nor Trisomy 13, nor any other abnormal condition besides an overwhelming enthusiasm for life that wears us out all day, every day. She was 10 lbs., 1 oz. at birth, and is now . . . glorious. She wears size 3T, she started walking at 7 months, she says at least a dozen words, she has a giant, heavy-headed mastiff wrapped around her finger. She tells baby jokes, manhandles us, and behaves like the healthy, beloved, cheerful little anarchist that she is. All is well.

But at the time, when the doctor took us aside for a special talk, we had no idea what we were facing. Naturally, we prayed that she would not have a condition that caused severe deformities and a likely early death. But a diagnosis of Down Syndrome was a slightly different question.

My husband and I had different responses. He is a crime reporter, and sees people mainly when their lives have gone horribly wrong.  His days were filled with families who routinely neglect and abuse even healthy, typical children, so you can imagine the dark life of a kid with special needs. He’s also more practical than I am, and was already thinking about how we could pay for special care, how we would fit yet another school system into our bonkers schedule, and how she would live after we died. For my husband, the possibility of a disability was an unmitigated disaster, a guarantee of suffering, and the only reasonable prayer was, “Please don’t let this happen.”

I was less fearful, but even at the time I was aware that my perspective was skewed, too. I spend so much time around pro-lifers, who in turn spend so much time pushing back against a monstrous eugenic tide. You hear so often about the delights and affections of children with Down Syndrome, you can almost get the idea that life with them is a walking dream, that their parents have won a golden opportunity to enjoy sunny childhood forever and ever with a sort of blessed, human Winnie-the-Pooh — a fantasy which is depersonalizing in its own way. People with Down Syndrome are not pro-life mascots or bunny rabbits or huggy-wuggy puppets; they’re people, with immortal souls and distinct personalities. And they often have myriad health problems which are anything but cute.

But I did know that, as we waited for the next doctor’s appointment, we weren’t waiting for something to happen to our child; we were waiting for a description of the way she already was. Above all, she was our child, our beloved. Months ago, as I set the timer for the pregnancy test, waiting for that second shadowy line to appear, I prepared my heart to embrace whatever was already true, and to focus all my emotional energy on being open, rather than wishing for one thing or the other. I wanted to be welcoming from the first moment. I did the same as we waited for our level two ultrasound appointment.

When the day came, we got a sitter, my husband took the day off work, and we drove up north to the hospital with the specialist who could peer into our baby’s shadowy insides and tell us what it all meant. First we met with a geneticist, who questioned us minutely about every inheritable abnormality both our families carried. I made sure she knew that there was no condition on earth that would make us even consider aborting our baby.

Then, I lay for a long time in the twilight of the ultrasound room as the technician probed and scanned and shoved my organs around, with none of the normal “Sorry about my cold hands!” or “I bet you have plenty of pink clothes already, huh?” She had to fight with the baby, who wanted to roll away and not reveal the secrets of her anatomy. Finally, the tech flicked on the light and told us, “You have a beautiful baby girl.” And smiled at us.

Yes? We already knew she was beautiful. All of our babies are beautiful. All of everyone’s babies are beautiful. I had seen her heart beating, beautifully. And then what?

Then we realized that she thought she had already given us a diagnosis. When she said, “You have a beautiful baby girl,” she was telling us, “Your child isn’t defective; instead, she is beautiful.” But seeing our still-expectant faces, she hastily elaborated that the baby showed no signs of any kind of abnormal condition. As far as she could tell, this baby was entirely physically healthy in every measurable way.

And that was that. I wanted to tell the technician, “We were ready, though! We already loved her.” I thought of how many times she must open the door of that dim room and let out parents who are crushed, grieving, already making plans to undo what was already true. Already making plans to stop a beautiful heart from beating.

It felt strange to be so relieved. How we burden ourselves, trying to show grace in carrying loads that haven’t been given to us.

There’s no tidy bow for this story. If our child had been born with and died from a severe birth defect, we’d still be mourning. If she had been born with a genetic abnormality, I suppose we’d still be in the early stages of learning how to care for her. As it is, she’s who she is, just like she would have been if she had been born with some grave defect. We did love her from the start, and we still do. Like all of our kids, she’s changed us. She’s brought joys and trials. We still have no idea what the future will hold, or how much heartache and pride she will bring us, or how she will live when we die. She is the light of our life, a life that is already full of light.

I’m writing this down not because I’ve learned anything, or really been through anything. I am grateful that I was given the grace to hold open the door of my heart from the beginning, loving her already in the twilight of uncertainty. No one can probe all the shadows and tell us what they mean, what they will mean. A heart that is open is a heart that can beat, and that is beautiful, beautiful enough.

 

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