Menu
How I felt when the doctor told us our baby has Down Syndrome

My husband and I found out that our daughter Penny had Down Syndrome two hours after she was born, and we shared the same instinct. We wanted to run away. Within minutes, I had the route planned out from the hospital room to my grandparents' summer cottage, three hours north, at the end of a secluded dirt road that would be abandoned in the wintertime. No matter that the cottage had no insulation against the December cold. It represented a familiar and safe place that would take me far away from everyone else, and I wanted to get there as quickly as possible.

FEATURED VIDEO

For years, the memory of that desire haunted me, until I finally realized that every time I had envisioned our escape, I envisioned us as a new family of three. In other words, I wanted, desperately, to run away from the doctors who were predicting a life of difficulty and hardship, from the nurses who I imagined whispering about our situation, and even from friends and family who, I suspected, just wouldn't know what to say or how to think about us as anymore. I didn't want to run away from Penny. I wanted to run away from everyone else.

And I wanted to run away from the future. I was scared of the labels that had all of a sudden been added to our family. I was scared of therapy and specialists and perhaps most of all, special education. I was scared that Penny wouldn't learn, wouldn't make friends, that school would be a source of stress rather than a community in which she could flourish.

We didn't run away. Looking back on it, there were some reasons to fear. People still use words about kids with disabilities as jokes and slurs. In Penny's short lifetime, that list includes everyone from high government officials to TIME magazine to high school kids walking past me on the street. And plenty of people still see Down syndrome as a source of suffering or assume that Penny's life will be impoverished as a result of her extra chromosome.

But I've also found a host of people who want to see Penny succeed, and if there is any place that she has been accepted and supported it has been at school.

It is six and a half years later, and we just moved to a new town. A few days back, Penny and I visited her new school. She stuck out her hand to introduce herself to the women who work in the front office. We noted the fresh green and blue paint on the walls. And we met Penny's two teachers, one of whom has training specifically to support students with special needs. If first grade is anything like kindergarten, Penny will thrive. She will make friends and read chapter books out loud and squirm her way through art class and yearn to grow tall enough and strong enough to do the monkey bars all by herself.

Forty years ago, Penny might have been denied access to a free public education. Forty years ago, we might have been advised to institutionalize her upon birth. But in recent years, parents, teachers, and legislators have worked to ensure a place for kids like Penny in our nation's classrooms. It isn't always easy or pretty. Plenty of kids still suffer the injustice of unequal resources, abusive classroom aides, the social ostracism that can come from peers and teachers as a result of their disabilities. But the doors are open to them, at least in legal terms. And countless families can attest to the value of including kids with special needs in our classrooms, both for the kids themselves and for their peers.

This morning, our whole family walked down our new street to wait for the bus. We stood alongside four other kids from our neighborhood, and when the bus finally arrived, Penny raced to board it, hand in hand with a third-grader who volunteered to be her buddy.

Six years ago, I wanted to run away with my little girl bundled up in her receiving blanket to keep her protected from the world of Individualized Education Plans and reading assessments and behavioral modifications. Today, with gratitude, I watched my little girl run away from me.

Originally posted on HuffPost.

You might also like:

When I was expecting my first child, I wanted to know everything that could possibly be in store for his first year.

I quizzed my own mom and the friends who ventured into motherhood before I did. I absorbed parenting books and articles like a sponge. I signed up for classes on childbirth, breastfeeding and even baby-led weaning. My philosophy? The more I knew, the better.

Yet, despite my best efforts, I didn't know it all. Not by a long shot. Instead, my firstborn, my husband and I had to figure it out together—day by day, challenge by challenge, triumph by triumph.

FEATURED VIDEO

The funny thing is that although I wanted to know it all, the surprises—those moments that were unique to us—were what made that first year so beautiful.

Of course, my research provided a helpful outline as I graduated from never having changed a diaper to conquering the newborn haze, my return to work, the milestones and the challenges. But while I did need much of that tactical knowledge, I also learned the value of following my baby's lead and trusting my gut.

I realized the importance of advice from fellow mamas, too. I vividly remember a conversation with a friend who had her first child shortly before I welcomed mine. My friend, who had already returned to work after maternity leave, encouraged me to be patient when introducing a bottle and to help my son get comfortable with taking that bottle from someone else.

Yes, from a logistical standpoint, that's great advice for any working mama. But I also took an incredibly important point from this conversation: This was less about the act of bottle-feeding itself, and more about what it represented for my peace of mind when I was away from my son.

This fellow mama encouraged me to honor my emotions and give myself permission to do what was best for my family—and that really set the tone for my whole approach to parenting. Because honestly, that was just the first of many big transitions during that first year, and each of them came with their own set of mixed emotions.

I felt proud and also strangely nostalgic as my baby seamlessly graduated to a sippy bottle.

I felt my baby's teething pain along with him and also felt confident that we could get through it with the right tools.

I felt relieved as my baby learned to self-soothe by finding his own pacifier and also sad to realize how quickly he was becoming his own person.



As I look back on everything now, some four years and two more kids later, I can't remember the exact day my son crawled, the project I tackled on my first day back at work, or even what his first word was. (It's written somewhere in a baby book!)

But I do remember how I felt with each milestone: the joy, the overwhelming love, the anxiety, the exhaustion and the sense of wonder. That truly was the greatest gift of the first year… and nothing could have prepared me for all those feelings.

This article was sponsored by Dr. Brown's. Thank you for supporting the brands that support Motherly and mamas.

Our Partners

In just over three weeks, we will become parents. From then on, our hearts will live outside of our bodies. We will finally understand what everyone tells you about bringing a child into the world.

Lately, the range of emotions and hormones has left me feeling nothing short of my new favorite mom word, "hormotional." I'm sure that's normal though, and something most people start to feel as everything suddenly becomes real.

Our bags are mostly packed, diaper bag ready, and birth plan in place. Now it's essentially a waiting game. We're finishing up our online childbirth classes which I must say are quite informational and sometimes entertaining. But in between the waiting and the classes, we've had to think about how we're going to handle life after baby's birth.

FEATURED VIDEO

I don't mean thinking and planning about the lack of sleep, feeding schedule, or just the overall changes a new baby is going to bring. I'm talking about how we're going to handle excited family members and friends who've waited just as long as we have to meet our child. That sentence sounds so bizarre, right? How we're going to handle family and friends? That sentence shouldn't even have to exist.

Keep reading Show less
Life