My son, Charlie, has Down syndrome. I recently wrote about wanting to change that if I could.
The crux of my argument was that I didn't believe taking away his extra chromosome would in essence take away his spirit, his personality, his sense of humor or his blue eyes. I believed taking away that extra chromosome would remove so many hurdles he faces in life. I believed it would make life easier for him.
Then I watched a debate on genetic engineering of babies. I listened to one team of highly respected professors argue that we should ban genetic engineering, that it's too scary, too complex and too unpredictable.
Then, I listened to another equally respected team of professors argue that we should continue to learn as much as possible, but provide oversight and regulation. Be transparent. Don't institute an outright ban.
If an indicator of a highly successful debate is when the viewer is left confused and undecided, then it was a smashing success. Neither side won me over completely.
Down syndrome has changed our lives
But I couldn't help but think of the implications to Charlie's life, my daughter's life — and of course the lives of other babies — if either side won.
Down syndrome has changed our lives and is why I will soon quit my corporate America job to stay home with my children. It's why my new job will include studying manuals on creating the ideal Individualized Education Plan (IEP) for my son and studying the knowing looks from my daughter as she grasps so much more than my son.
Loving someone with Down syndrome has made me a better person. It's made me an advocate and a tyrant at the whisper of the R word. It's given me purpose.
Oh, right. It's not all about me
Watching the debate made me realize all the beautiful, wonderful moments I would erase if I also erased the third copy of Charlie's 21 chromosome.
It would be eliminating the poignancy of the day I returned from work to find Lynette, our amazing, loving, soft-spoken nanny on the floor playing with Charlie. As soon as she saw me, she said, "Watch this."
She placed Charlie on his tummy and counted, "One... two..." Before she reached three, he had tumbled onto his back. He had rolled over. He did it again and again.
By the next morning, he was rolling across the house.
By the next morning, my eyes were red from crying tears of joy. Exhausted, love-filled, fat tears of exhilaration. We had worked so hard for that moment.
So, you see, eliminating his extra chromosome would change our lives forever. And I love our lives.
What about life and death?
Now, there's much more to this debate. Down syndrome is not a death sentence (although it does come with a predisposition for health concerns), while many genetic conditions such as the rare mitochondrial condition called Lee syndrome can lead to a newborn's death shortly after birth. My heart aches for any parent who must witness a child's suffering.
That forces me to consider what I know. For example, I know that childhood cancer is an evil illness on which we spend millions to research a cure. Cancer, as I understand it, manifests after a child is born. No one questions the need to find a cure.
So, how can I question a parent who wants to prevent a life-threatening condition from materializing?
Science and progress offer a parent that opportunity. I dream that regulation and education together can prevent haphazard application of what's possible. I hope we can discuss and evaluate what's possible in contrast with what's necessary.
I don't need my son to live without Down syndrome. I need my son to live. My husband and I will continue to do whatever we can to give him an amazing, loving, joyful life.
That's a small gesture for what he — and his extra chromosome — have given us.