There was an article about a father whose daughter had Down’s. He was a scientist and a mathematician and upon accepting his daughter’s diagnosis, he dedicated his life to studying the condition. After years of research he’s entering into clinical trials for drugs that will help treat adults with Down’s to improve memory functioning.
This leads me to the grand question. If someone developed a cure for Down’s, a little pill that would delete the extra 21st chromosome, would I give that pill to my daughter?
When you have a kid with Down’s you inevitably run into two or three groups of parents. The ones that the Down’s is a total blessing (the crusaders), the ones that think it’s a total nightmare and the ones that don’t have an opinion one way or the other. I tend to jump back and forth between the last two. I’ve never thought of this as a blessing. Not once. It’s always felt like a barrier that’s kept my daughter and I from really connecting. It doesn’t keep me from loving her, it has nothing to do with that. I think that’s an important distinction to make. It has nothing to do with how I feel about my daughter, but it has everything to do with how I relate to my daughter. When I found out Jess had Down’s it wasn’t me I was sad for, it wasn’t my own loss that I was grieving. It was hers. I was so heartbroken over every possibility that had been taken away from her. And as open minded and optimistic as the crusaders want to be, the diagnosis of Down’s comes with instantaneous limitations.
But that extra chromosome comes with more than just certain physical characteristics like those curved pinkie fingers, and those characteristic flat eyes. It comes with little personality traits that are unique to kid’s with Down’s. She’s unfailingly kind, trusting, and forgiving. She has her bad days, just like any other kid, she can be a total pain in the ass, but unlike kids without Down’s, Jess doesn’t know how to hold a grudge. She has no concept of shame, or inhibition. In Jessica’s world everything is happy and fun. There’s no such thing as anxiety, Santa is always real, and it doesn’t matter what label is on her jeans.
If there was a pill that could delete the extra 21st chromosome in those 3/10 affected cells, would it annihilate those lovely traits in exchange for giving her the ability to read, write, do mathematics and function at age level? If it did, would it be worth the trade off?
And what about Jess? What would Jess want?
I see how frustrated she gets when she doesn’t understand. I see how sad she gets when she longs to be included with the other kids. She knows she’s different, but she doesn’t understand how she’s different. It breaks my heart to see her struggle so hard with things that seem so basic. Simple addition and subtraction seems so monumental to her, spelling and reading are so hit and miss. I don’t even know if it would be possible to find out what Jess would want. Would she want to change? How would we even begin to find out? It’s barely possible to communicate effectively with her on anything of an abstract nature.
I would be exchanging my Jessica for another version of Jessica. Who’s to say the other version of Jessica would be better, and who’s to say my Jess would like being the other version of Jess more? It’s an ethical mine field. This isn’t a cut and dry “if there was a cure would you give if to Jess?” question.
But when all is said and done, I love my daughter, and I more than anything I want her to have the best chance at life possible. Unfortunately, being mentally disadvantaged isn’t the best chance possible, and so if someone had a cure I think it would be wrong of me to deny Jess a chance at a life free of this disorder. And while there would be things I would miss (and even writing this blog, and thinking of theoretical possibilities is bringing tears to my eyes) about my darling perpetually youthful little girl, she would deserve an opportunity to really grow up and live her life.
And so I will continue to support Down’s research in hopes that one day they will develop treatments and therapies to help increase functionality. I doubt there will be a cure for chromosomal mutations, but if there’s a possibility that an Alzheimer’s drug can help my daughter learn to read, write, and do math on grade level…it’s a step in the right direction.