Finding out your baby has special needs during a pandemic

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By Maggie Shafer

Dear Baby Boy,

The doctor said you had a bright spot on your heart. And it was bright. Even my untrained eyes could see it, lighting up that dark ultrasound room with its pure white glow.

They said the spot itself didn’t mean anything, they said you would grow out of it. Lots of babies have bright spots. But it was an indicator that you might be different from them, that you could have what we call Down syndrome, but I’m healthy and not too old and so it was nothing to worry about, odds in our favor, but let’s just make sure.

They drew my blood and I left the lab, your bright spot still shining in my eye.

They told me it would take two weeks, so when I answered the unknown number two days ago, I was not prepared to hear a doctor’s voice. I was not prepared for the words ‘tested positive.’ I did not understand them. I did not hear the next steps and do not remember what else was said. My brain looped ‘no no no no no’ as I thanked him for the cold call that should have been a gentle meeting if we were not in the middle of a global pandemic and afraid to touch each other.

I melted into your father, who had heard enough to know that what I heard was not the news we had expected. We cried there, that afternoon, taking turns being the one who needed propping and the one who propped. You kicked me from the inside, as you have a habit of doing.

You kicked and kicked, as if to let me know I could cry for myself but not for you—you were fine, you were perfect, you were the same you’d been since you started emerging from those tiny cells of ours just five months ago. We were the ones who had to change. And we are, every hour a little more.

Shelter in place has become a shelter of its own, a cocoon where our family has slowly let this diagnosis of Down syndrome sink itself inside our skin, where we have spoken our fears and asked our questions and let the anger and sadness and splintered moments of peace come at us uninterrupted.

I know just enough about baby development to know you can hear me now, you know my voice, and you must know, then, that I am still crying. But I want you to know, my little bright heart, that the tears I shed today are no longer Tuesday’s tears of despair. I hope one day you will forgive me for those.

They are the tears of being opened, the painful release of small-minded expectations to make room for a bigger future we don’t yet know but trust will be full of a goodness we cannot yet understand. A future full of you.

I am past the part of the story where I deny that you are going to be different. But I do believe with all my marrow that the doctor was wrong about one thing—you will not grow out of that bright spot. The heart that shined a light so pure on me in that medical bed will light up more dark rooms and those lucky enough to be in them every day of your wild and precious life.

I choose you, my son, just as you are. See you soon.

Maggie Shafer is a copywriter and freelance journalist living in Colorado with her husband and two-year-old son. You can read more of her work or get in touch at maggieshafer.com

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