‘As Long as the Baby’s Healthy’… But What if He’s Not?

My son Ace was born seven weeks ago. He is my third baby, a boy like his brothers. He has blue eyes and sandy brown hair that’s making way for blonde. He can already reach out and grab the toy that hangs over his head. He has rolled over twice (accidentally, I’m pretty sure).

Yet everything feels different. My pregnancy with him was different.

In December my husband and I received a prenatal diagnosis that shook us. Though we shared it with close friends and family, we didn’t tell anyone else.

Despite low hormone levels and low amniotic fluid in the last few months of the pregnancy, despite fears of heart problems, uncertainties about the depth of his medical issues, I still grew the same round, taut belly. I still had the glow in my skin. I still felt kicks and prepared my boys for their new brother.

And the strangers at the playground and the library, the acquaintances at my son’s school, asked the same questions people have asked for ages. “How’s the pregnancy going?” they asked. “Is everything healthy?”

They asked the questions I’d asked pregnant women in my life so many times before. They asked the questions I was asked in my other pregnancies, questions I never thought twice about answering.

“How’s the pregnancy going?” I didn’t want to lie, and I didn’t want to tell the truth either. I didn’t have words for the strangers and acquaintances. What could I tell them except that I was afraid?

Our child would have Down syndrome, and I was trying to make peace with what that meant for me, for my family. I was still reminding myself that it wasn’t a dream each morning when I woke and my body was full of a child I didn’t yet know and wasn’t sure how to plan for.

When the kids are grown would my husband and I ever travel or live in that cool, downtown loft like we’d always imagined? Would this baby ever live on his own? If not, would our older boys need to care for their brother when we no longer could?

I’d stand in the mirror, brain full of questions, belly wide and round with the weight of this sweet child and I would practice my mantra:

I receive this, Lord. I receive him. I receive my child.

I’d face the other moms on the playground, where I became suddenly aware of every typical child, of every pregnant woman who probably didn’t notice how wonderful it is to be pregnant and unafraid.

“How is your pregnancy going?” they’d ask, smiling.

I defaulted to an ironic smile and the same line, “Welp. We just found out we’re having…a third boy!” And always on cue, as if this was something we each were taught to say, the stranger would respond: “Well, at all that matters is that he’s healthy, right?”

Right. All that matters.

That’s when I’d feel the urge to push my kid in the swing or glance down at my phone, anything to avoid the question of my baby’s health. Because if that’s all that matters, we had some major trouble on our hands.

In the final few months, I was much smaller than I’d been in my earlier pregnancies. Babies with Down syndrome often slow their growth at the end, and there can be complications that lead to early birth. I held my breath as the doctor measured my belly every two weeks. How concerned would she be for our baby? Would I have to be induced?

And the strangers on the sidewalk began to utter a new praise: “You’re so little! You look so great!” Over and over, my small belly—where I feared my baby was not growing enough—was praised. I was good because I was small.

All that matters. All that matters.

Of course we always say to strangers the easiest thing. I understand that. We all crave ease, pleasure. The cuter the better. The least amount of struggle, the happier. We ask if the pregnancy is healthy expecting smiles and head nods because it’s too scary to admit that sometimes pregnancies are not. Sometimes small bellies mean something isn’t right.

What matters? Here’s what I can tell you: When Ace was born with his perfectly round head, a mouth like his older brother’s, and thin eyes—dark navy blue, like deep water—he was a tiny little thing who couldn’t fit into his brothers’ hand-me-downs. And he was beautiful.

I felt a deep desire to run back to the park and the sidewalks, to the strangers in crosswalks and shopping malls. I longed to make sure they knew the secret: What matters isn’t health. It isn’t a life free of fear. It isn’t a secure future and promises of ease.

All of us who are parents will suffer, whether that is early in our baby’s life or later. Loving always brings pain, whatever we say to one another, however we strive to cover our fears with easy words.

Here’s what matters: When his two brothers saw him for the first time, I felt a holy privilege settle around me: I was this boy’s mother. Me. My husband, our two older sons, and I get to be his family. I was given this great task to raise a child with an extra 21st chromosome, and what would I do with the privilege?

Here’s what matters: Not that my child has Down syndrome. Not that he is healthy or unhealthy. Not whether my tiny pregnant belly was cute or whether Ace is an adorable baby. Instagram “likes” will stop one day. My pregnant belly has turned to a normal soft postpartum middle. Health doesn’t last, does it? Cuteness is temporary.

What matters is how we receive each other. How we receive the ones we’ve been given to love. I receive this, Lord. I receive him. I receive my child.

What matters is how we love.

Micha ("MY-cah") Boyett is a writer, blogger, and sometimes poet. A former youth minister, she's passionate about monasticism and ancient Christian spiritual practices and how they inform the contemporary life of faith. She is the author of Found: A Story Questions, Grace, and Everyday Prayer. Boyett and her husband live in San Francisco with their three boys. Follow her on Twitter or Facebook, and find her blog at michaboyett.com.