The grief and gift of mothering a child with Down syndrome

We live in the city, so we’ve parallel-parked six blocks from our destination. August gets out of the car, and I unstrap his little brother, sling him around my hip. He’s two but at 22 pounds, he’s the size his brother was at nine months.

We’ve been talking about the movies my fourth grader desperately longs to see, and the injustice of my parenting choices, when I change the subject. “Hey Ace,” I say to the toddler in my arms, “this is where Mommy was when I found out you would have Down syndrome. Walking this exact sidewalk, waiting for this very same light.”

August forgets his nine-year-old angst for a moment and reaches for his brother’s head, moving Ace’s thick blond hair across his forehead. “Yeah, Acey,” he says. “And we’re so happy you have Down syndrome. Because we love you so much.”

There’s not a good way to tell this story. Believe me, I’ve tried.

Like every love story, it’s complicated. There is pain and kindness and devastation.

I could start with the prenatal echocardiogram or how I shopped at Trader Joe’s one hour after getting the diagnosis on the phone. I cried up and down the frozen food aisle. (Not the best emotional state for responsible purchases.)

I could tell you, readers, about the letter I wrote the nurses on the labor and delivery floor, and printed out to carry with me to the hospital, packed in the overnight bag beside my robe and hairbrush. “Our baby will most likely have Down syndrome,” the letter said. “Please don’t whisper around us. Please don’t say you’re sorry. We are celebrating his birth.”

Ace’s life has redefined motherhood for me, has brought me into the second half of my life, where all my children’s abilities are richer and more powerful than any diagnosis can define.

I sounded brave in that letter. I sounded like a woman of conviction, unrattled. The kind of woman who would be the advocate her baby with Down syndrome would need. The truth? As I typed it my fingers shook, my breath was short. I took my hands off the computer keys, closed the laptop and pressed my forehead against the cool metal and wept.

I really should start at the beginning, though.

I gave birth to two little boys before Ace. Beautiful, strong, both in the 95th percentile in height. Both good eaters and early talkers. I had no reason to think my third baby would be any different. I was 35 and healthy. My husband and I were hoping my 20-week ultrasound would reveal that we were having a girl. It had to be; the pregnancy had felt so different.

Related: How I felt when the doctor told us our baby has Down syndrome

It turns out my pregnancy was different. The ultrasound showed a boy with a calcium deposit in his heart, a common physical marker for Down syndrome. Still, based on my age, our baby had only a 1 in 476 chance of carrying an extra 21st chromosome. It was unlikely, I told myself. I had some blood work done to rule it out, to give me peace of mind for the rest of the pregnancy.

I answered the call from the genetic counselor as I walked from the car to a gymnastics class for my then-three year old, my second-born son. I was pushing his stroller and had stopped at the crosswalk, waiting for the light to change. The counselor was young and cheerful, and asked for me as if she were my barista, calling my name in a crowded café. Then she got to the results: Positive. That was the word she used. The tests came back positive.

I felt a whoosh of fog rush into my brain, trying to unravel and reorder that word, neurons firing in every direction. Positive, positive, positive.

Related: My child’s Down syndrome diagnosis changed who I am for the better

She said there was a 99.7 percent chance that my child would have Down syndrome. I pushed the stroller forward, stepping into the street. OK, I said. OK.

I walked into the park, past the log my kids always crawled through, past the community garden, the old stadium on Frederick Street. I slipped my phone into my pocket and watched the world harden into dark slanted walls around me, pressing in, tunneling everything.

Grief is a strange thing, especially when what you’ve lost is an idea. I didn’t lose a child while walking from the car to gymnastics that day in December 2014. I lost a more typical vision of what I thought my life would look like, what I had imagined our family would be. I lost an expectation: a neurotypical child, one who might play a sport well, or learn an instrument, one who would probably be an early reader. I lost an assumption that now seems wildly simplistic. The truth is we never really know who our children will be, their abilities, their weaknesses.

I’d been a mother for almost seven years at that point. I knew the complexity of my children, how limitation is always there, right beside every person’s gifts. Alongside every spark of delight in a child’s personality are the challenges they often face from their earliest moments. Still, I sat in the bleachers at the tiny tots gymnastics class and wept for that lost vision of a typically developing child, and then woke each morning in a haze, staring at my pregnant belly, the baby I wanted so badly. I mourned for that baby who never existed, the one without Trisomy 21.

I grieved for the “normal” life I feared I was leaving behind.

The truth is that, unlike other disabilities, Down syndrome’s genetic code affects every cell of Ace’s body, which means that Down syndrome is not simply an intellectual disability. It affects his physical growth, his milestones, his personality, his presence in the world.

There is no Ace without Down syndrome. Ace without Down syndrome is another child, one I’m sure I would have loved, but not this child. To love Ace is to celebrate all that he is.

Here’s what our life is like. One of my boys suffers from anxiety. His secret weapon, his therapist has helped him realize, is the little brother he loves so deeply. “When you feel out of control,” his therapist taught him, “remember to see yourself the way Ace sees you. He knows the best parts of you.” When my son has a panic attack Ace enters his room, settles in beside him and waits. Eventually, my son gathers his brother and holds him. Ace leans in for the hug.

Related: 8 calming techniques you and your kids can do together

I like to think his extra 21st chromosome has actually given him a deeper intuition than the rest of us, a secret antenna that allows him to move toward our pain. Ace carries inside him a kind of magic that causes the people he encounters to soften, to take a deep breath.

One of my boys often whispers to me, “Mom, I love Ace more than anyone in the world. Way more than you and Dad.” I tell him I totally understand.

My letter was delivered to the nurses’ station while I waddled and deep-breathed myself into the delivery room. When my youngest baby came from me, he was wiped clean and placed into my arms.

His face was perfectly circular. His features were tiny, his eyes, almonds. His nose was smaller and flatter than his brothers’ had been. He was, and still is, beautiful.

And as I held him—the smallest of all my babies, a child that many in this world would reject or dismiss, a child who will always need more help, more support—I didn’t cry. I felt the grief lift from my chest. Oh, it’s you? I thought. I know you.

Almost three years later I am used to people staring when we walk into a room. Our family says his cuteness is his superpower, capable of warming the coldest hearts in his vicinity. His smile is huge, and though he has teeth, we can hardly see them when he laughs. He has the best eyebrows in the family, perfectly angled as if he is always surprised. He wears thick baby glasses that magnify his big blue eyes.

We call Ace our Minister of Joy. He waves and blows kisses like a princess on a Disney float. He loves music. He lies down with his face on the speaker of his CD player, staring intently at the slowly changing glowing-red number. When the song ends he yells out, “ah duh!” (all done.) Yesterday, I found him in his diaper dancing alone in the middle of the room, twirling, then raising his arms up and bending his knees as if he were about blast himself into space. Maybe that was his plan—space travel. I always wish I knew more about what happens in that mind of his.

There’s more and more debate about his mind, the very brain that pretends to be a rocket or grasps the intensity of his brother’s needs or stubbornly refuses to eat anything that isn’t crunchy. There is debate online in which those who’ve never loved a child with an intellectual disability (and some who have) weigh in on whether or not such a child should be carried to term, given the sort of life where intellectual and medical challenges affect every facet of their lives. What tends to be missing from those debates is the part of our reality that most parents of kids with DS don’t know how to define.

I call it, The Magic.

I have always been emotionally tuned in, able to intuit the discomfort or judgment of others near me. So I’m aware when the stranger beside me at the park is uncomfortable with my son’s presence. (It happens.) But it’s The Magic that allows me to know the truth. If the stranger at the playground knew, she would envy my life. Yes, there are the doctor appointments and therapies, and battles to get Ace placed in the sort of classroom we believe is best for him. Yes, feeding is difficult and I worry about his weight daily. And, of course, future grief is waiting for us: I will cry when he struggles to make friends, when he’s the kid who isn’t invited to the birthday party. The highs will be higher, the lows lower.

Related: 6 things parents should know about IEPs, from a school psychologist

But what the stranger beside me at the park cannot yet grasp is how there are moments when Ace reaches for me, places his hand on my cheek and I feel my own healing, the dark tunnel of his diagnosis falling away to reveal a sky that’s brighter than I thought possible. She’d believe that Ace is rebuilding my life’s vision, how that future is messier and deeper than I ever dreamed—wild with love.

There are so many clichés about Down syndrome. The story is often the same: The family grieves, they grow and then they realize that their child’s Down syndrome is the best thing that could’ve happened to them.

Clichés’ are simplistic, of course. They fail to acknowledge the complexity of our daily lives, the tears we’ve shed in the midst of loving him, the density of the joy and fear we can carry within ourselves for one human. But the clichés are also there for a reason.

Ace’s life has redefined motherhood for me, has brought me into the second half of my life, where all my children’s abilities are richer and more powerful than any diagnosis can define.

And so, yes, what August said to him was true. Ace, we’re so happy you have Down syndrome. Because we love you so much.

A version of this post was published March 19, 2021. It has been updated.