Sun. Dec 22nd, 2024

Why My Child Isn’t a Mistake

mom and son

I was sitting in the family room watching TV and stroking my pregnant belly when my husband, Andy, walked into the room. Ten minutes before, he had answered a knock at the door. When I looked up and saw his dumbfounded expression, I knew instinctively that something was wrong.

“Jennifer has Down syndrome,” he finally said.

“What!”

“The doctor suspected Down syndrome and did some blood work. The test results came back positive.”

I didn’t know what to say and I certainly didn’t know what to think. Jennifer, the newborn daughter of our dear friends, Bill and Kristin, had Down syndrome. Andy and I were also expecting a girl, and Kristin and I had dreams of our daughters growing up together and being best friends.

“But … are they sure?” I asked Andy. “I mean, how is this possible?” Just three weeks before, he and I had stood in the small hospital room holding that precious, beautiful baby, and gazed into her sweet face. There was plenty of joy and laughter as the brand new parents showed off their daughter. We were delighted. Our friends had a baby girl!

That scene replayed in my mind as I tried to understand this unimaginable tragedy our friends were facing. Jennifer was such a beautiful baby—was it really possible that she had Down syndrome? Wouldn’t such a baby be … well, not beautiful?

The diagnosis had to be a mistake, it just had to be a mistake. Why was this happening to our friends, and how would they ever survive? Were they devastated? Were they scared? Were they embarrassed to tell people? Would they still show off their daughter, take her out in public? How would other people look at them and their baby?

In my helplessness, I reminded myself that there were no better parents for a child with Down syndrome than Bill and Kristin. Both of them were full of love and acceptance. I was also comforted by the fact that they had friends who would walk this road with them, two close friends who also had a daughter with Down syndrome. But there was one question that I could not get out of my head: What if my baby girl was born with Down syndrome? Oh Lord, I could never have a child with Down syndrome, please let my child be healthy.

The next time I saw Kristin, I felt uncomfortable. I didn’t know how to act around her. I asked how Jennifer was doing and what life was like with a brand new baby, and I told her how excited I was to have our baby girl born in a few months. I was not going to bring up Down syndrome. I am ashamed to say that I never once asked about my friend’s feelings. Andy, on the other hand, had multiple conversations with Bill. Bill shared that one of the most frustrating things for him was when people would say, “I’m sorry.” Bill and Kristin weren’t sorry and didn’t want others to feel sorry for them. When Andy told me this, I realized that I did feel sorry for them, and that my attitude needed to change. Jennifer would still be our daughter’s best friend, Down syndrome or not.

Our daughter Ellie was born in August, just three months after Jennifer. Often Ellie and Jennifer reached milestones like rolling, sitting and crawling around the same time. My daughter was four months when she rolled over and Jennifer was seven months, the time when most “typical” children are sitting on their own. It never occurred to me that seeing this contrast might have been hard for Kristin. How consumed I was with my perfect baby and my perfect life!

When Jennifer was 15 months old, Kristin took a part-time job and needed to find someone to take care of her daughter. I happily volunteered to have Jennifer come to our house. I was so excited, knowing it would be good for Ellie to have a playmate. Little did I know that Jennifer was coming to our house because I needed her.

Over the following months, Kristin and I became closer friends and she started sharing more of her thoughts and feelings about having a daughter with Down syndrome. I became better able to see things through her eyes and join in the celebration as her daughter reached milestones.

We cheered when Jennifer was standing on her own, whooped when she was able to sign and bragged about the simple words she was able to say. Most importantly, I got to see how beautiful life can be with a child who has an extra chromosome. Jennifer had Down syndrome, sure, but the diagnosis was such a small part of who she was. Jennifer was perfect, exactly how she was intended to be. And in only a few short months, I fell in love with her. That year, in our Christmas letter I wrote, “I love that little girl almost as much as if she was mine.” And I meant every word.

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