Parenting with Down Syndrome

Parenting with Down Syndrome

Almost four years ago, I gave birth to one boy and one girl…

They both had blonde hair, they both cried right away, they both had ten fingers and ten toes. They were both beautiful. They pooped, spit up, and wanted to nap and eat together, all around the same time. Many parents of twins will tell you that it can be hard to separate them for a long time — there is a weird pull to have them close to each other. Side-by-side was how Wally and Kenzie spent every single day.

But our situation was a little different, because our twins were different: Our daughter Kenzie has Down syndrome, and our son Wally does not.

I was 19 weeks along in my pregnancy when we found out. My husband and I spent the rest of my pregnancy not only preparing for twins, but preparing for a child with special needs. I immediately felt like my pregnancy was a fraud. I remember thinking my twins wouldn’t know each other, they wouldn’t play, they wouldn’t fight, they wouldn’t be like other twins, and I sat silently with that crushing thought, until I met them.

On the day they were born, my fears evaporated. Kenzie and Wally were the same. They were babies, needing what every baby needs: food, sleep, diaper changes and love. For a few months, there was no difference between them. My husband and I would pass them back and forth while we watched TV late at night. It was bliss. Hard and messy bliss, but total, absolute bliss.

Then, at around three months old, Wally propped himself up on his elbows and lifted his head. Kenzie lay on the floor next to him and cooed. At four months, he sat up on our laps and held his body upright. Kenzie lay on my chest and snuggled into my neck. At 10 months, Wally was crawling. Kenzie was not. At 14 months, Wally took his first steps. Kenzie did not. At 16 months, Wally was saying a few words. Kenzie was not.

That nagging feeling of Kenzie not keeping up crept into my thoughts, and soon I wasn’t able to focus on much else. Of course, I knew that comparing them was useless, but it was easy to see the gap widening between them. Kenzie received therapy at home, and it was heartbreaking to see how hard she had to work to pick up a block, to curl her chubby fingers around a toy and transfer it to her other hand. Meanwhile, Wally did it all so easily, sitting to the side quietly building a tower of blocks with a delicateness that Kenzie would need to work years for. While raising a child with special needs, I had another child shouting with every easy movement, “Like this! She should be doing it like this!”

He was a constant reminder that Kenzie was delayed, that she had a disability.

For a long time, the celebrations of Kenzie’s success were exaggerated in an attempt to compensate. When she accomplished something she had been working towards for a while, we celebrated. We telephoned family, we told everyone we knew. We were proud of her, but maybe… we didn’t expect that she would do it? Only now, looking back, do I wish we had treated those milestones with a little less excitement, and a little more “Yeah, girl, we knew you could do it. Let’s move on to the next one.”

Kenzie started walking at two-and-a-half with her brother jumping and bounding around her. Not ahead of her, but in celebration of her. Now, Kenzie, at three-and-a-half years old, is beginning to say words, and it’s usually Wally who knows what she wants before Mom or Dad do. And my perspective, too, has changed.

When I was pregnant, I felt angry with the universe. But I had no idea of the actual gift I was getting: A world where my daughter teaches my son compassion and kindness each and every day. A world where my son teaches my daughter to push herself and be braver than she thinks she can. Now I finally see the truth: The universe gave me twins whose very differences make each other better.

Wally loves to run around our yard at full tilt, and lately Kenzie has been joining in. The joy on Wally’s face when his sister plays with him is enough to make my heart burst. They communicate without words and always know what the other is saying, the way twins do — I’m happily watching it all unfold. Kenzie loves music and her dolly, while Wally loves trucks and puzzles; the difference in preferences isn’t because one of them has an extra chromosome, it’s because they are individuals. And I wouldn’t wish their relationship to be any other way.

Thank you, Katie!

Parenting with Down Syndrome

Parenting with Down Syndrome

P.S. Beautiful reader comments on parenting, and home as a haven. And one mother shares: “I had a stillborn baby.”