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Leah, a white woman, has her arm around her daughter Caroline. They’re both smiling at the camera.
Exceptional Lives Community Member
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July 13, 2023

Parenting a child with a disability: life’s little surprises

What happens when you learn you’ll be parenting a child with a disability? Here’s how Leah went from grief to joy when her daughter arrived.

by Leah Flynn Gallant

After I had my daughter Caroline, a number of people told me, “you have to write about her,” not just because I’m a new mom with a baby, but also because Caroline has Down Syndrome and so I have learned a whole lot about parenting a child with a disability. I do write about Caroline and I write about her because she is Caroline. Having Down Syndrome is part of who she is and not the center of who she is – or who she will become – as a person. But for now, we can start at the beginning.

After three painful years of trying to get and stay pregnant, we finally got that “Congratulations!” call from the doctor’s office. We waited, excited, until we heard the heartbeat, until we got past that 12 week mark, until we saw her perfect little body on a screen swimming around inside of me. And because of what they so kindly labeled as “advanced maternal age,” I had to do a series of tests to rule out any possibility that our child would be born with what they call a “chromosomal abnormality.”

The person delivering the news of your child’s disability will never do it right.

When the genetic counselor called,  she told me there was a 95% chance that my baby would have Down Syndrome.

My voice shaking and mind spinning, I asked a million questions: what do these results mean? Did this happen just because I’m old or because we had fertility help? Would I be able to carry the baby to term? How could this have happened? What could I point my finger at and blame? Only as an afterthought, lost among the panic and the tears, did I remember to ask if the baby was a girl or a boy.

The person delivering this kind of news will never do it right. You will be angry and frustrated with them as if it was their fault for giving you this fate. You will want to get in your car and drive to their office and scream and yell and shout at them. And while they will never be on your Christmas card list, you will eventually find that the news they delivered was probably the best thing that could have happened to you.

Afterwards, I called my husband and, with tears rolling down my face,  I told him what I had just heard, followed by, “and the baby’s a little girl, Jeff. She’s our little girl.” And that’s when I started sobbing, picturing the little hope growing in my stomach. But now – what of her future?

They gave us a window of time to decide if we would move forward with the pregnancy. I wrestled with things I had never thought of before: quality of life, future, health issues, heart complications, ability to make friends and get a job, life expectancy, etc. I was a Special Education major in college, but my mind went blank on what this all meant for our daughter.

That weekend was a dark one for us. We didn’t sleep at all that night. We just held each other and cried. I truly believed we never would laugh again.  And in the morning, I cried because I felt ashamed that I would ever think of not going forward with this pregnancy and scared because I knew that we would. 

If I could go back in time, here’s what I would tell that scared, grieving couple

If we could go back to that couple with this new diagnosis today, we would have so much to say. What lay ahead for us was nothing to cry about, but rather, much to rejoice over. We would tell them that our life would be more complete and more full of hope than we had ever thought possible. We would have profound happiness, new friends, and a new appreciation for humankind. At the time, we thought “God, could you just give us a break?” – but it turned out that Caroline was our break.

We took time to find out all that we needed to know about Down Syndrome. We met with doctors and specialists, made connections with the community of other parents and families, finding small hopes within others’ stories and realities. Soon we found we were back where we started – excited and nervous about welcoming our first child into the world. 

A few months later we were on our way to Boston Children’s hospital to meet with a doctor at the Down Syndrome Clinic there. We were both on edge and anxious as we were still getting used to the news. We stepped into the hospital elevator and joined a beautiful red-haired young woman and her two equally beautiful daughters. One of the daughters, who was 4 or 5, had the almond-shaped eyes of someone with Down Syndrome.  Her eyes locked with mine and she reached out and grabbed my hand tight-tight and didn’t let go. She smiled broadly, and she seemed to say to me, “it’s okay! Your daughter is going to be great. She’ll love you so much, as you will her.” She didn’t let go until we exited the elevator. It brought such great comfort that day. And that’s when I knew deep down what our reality would become. And I was hopeful.

Here’s what we’ve learned about parenting a child with a disability

When Caroline was born and they put her wiggly, slick body on my stomach, I saw her face and her beautiful features and I knew they had been right, that she had Down Syndrome. I was very scared and overwhelmed – but love and the natural bond between mother and daughter wedged themselves in between those feelings and took up shop within my heart.

 I folded her into my arms and looked into her eyes and I knew that if God had told me in that moment, “just kidding, Leah, that was a test. I’ll give you a ‘typical’ child”, I would say “no way, God. I will take Caroline just as she is. She’s just the way she should be.” 

In the first few months of her life, here is what we experienced: she pooped explosively. She cried like she was being stabbed when she was hungry or when I tried to put her down or eat my lunch. She slept like an angel and cried like a banshee. Getting her clothes on was like dressing an octopus on speed. So… just like any other baby. She is a combination of me and my husband, which means she will probably like to watch football and bake cookies. She’ll probably make friends easily and be the life of the party because of her laugh and her bad jokes. Right now, that’s all we can hope for. And the rest of the possibilities will just unravel – the way that life is meant to, with no peeking at the end of the book and looking into a crystal ball; but rather revealing it as it is meant to be – slow and steady, full of beautiful, and sometimes hard, surprises that makes us who we are. But those surprises are always worth it. And oh, is she ever.

The anxiety  and worry is still there, but just like any parent, we move on with excited anticipation and work to enjoy every small moment that life gives us. That has nothing to do with a diagnosis, or with parenting a child with a disability, but has everything to do with what it means to raise a child. 

We’re still learning, and for now, Caroline will be our teacher.

This blog originally appeared in December 2016 at https://laflynn.wordpress.com and was adapted with permission from the writer.

Leah Flynn Gallant is a Talent Development Consultant and Diversity, Equity, Inclusion officer at MIT. She was recently elected as a member of her town’s School Committee and actively involved in the Massachusetts Down Syndrome Congress as a First-Call parent. She lives in Dedham, MA with her husband, Jeff, and of course, Caroline! 

Caroline is now in kindergarten and will attend first grade next year. She is actively involved in town soccer and dance and loves to read and play with friends.

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