Part TWO? Was there a part ONE?
Back in 2009, I wrote this blog post about whether or not we, as parents of children with Down syndrome, would choose to take Down syndrome away from our children. At the time, it was a hypothetical question, yet it was a hot topic in our community because researchers announced they were going to start working on giving parents the capability of doing just that. Speculation ran wild. There were arguments on both sides of the fence. You should go read my post, it was a good one. Go ahead, I'll wait. ;)
SO this morning another article was released that has our community talking. This time though, it appears that a "cure" for Down syndrome is actually on the horizon. Once again, parents are stating their case for both sides of the fence. Some would take Down syndrome away from their child. Right now. No question. They say that it cannot change who they ARE and this is no different than taking them to therapy to help them improve their condition.
Others aren't so sure. Yes, it may help with the cognitive delays, but will it change their personality, the essence of their being, the "thing" that attracts everyone to them and makes them so loved by most of society? Messing with the chromosomes is a scary thing. They haven't said exactly HOW they plan on "curing" Down syndrome, but I imagine it's a little more than popping a pill.
One of the big fears, of course, is that this will be the end of Down syndrome altogether. With high prenatal abortion rates with a confirmed diagnosis of Down syndrome as it is, will this increase it to 100%? In the article they compared it to the end of Small Pox and Polio which really rubbed me the wrong way. Down syndrome is NOT a disease... so... does it need to be "cured" at all?
In my blog post 4 years ago I said that I wouldn't take Down syndrome away from Kennedy. At that point she had survived cancer and was about to go through major spine fusion surgery. We were in the thick of her medical "crud". We were at different doctor's offices on a weekly basis and I'm pretty sure I didn't eat. Or sleep. Ever. A year later we battled the school system for inclusion and that was fun too. ;) Down syndrome has taken us through some tornadoes, for sure.
Right now, we're in a sweet spot. Kennedy is coasting along in life with maintenance doctor appointments, doing well in school in her Least Restrictive Environment. She's doing well in dance, has lots of friends and is overall a happy kid (except when we didn't buy her a $1,000 puppy... which is another story for another time! HA!)
Is she behind her peers cognitively? Yes. Is that hard for her? Yes. She's well aware that she has to work harder for things than her friends, and she's learned to use it as an excuse ("I can't do my homework because I have Down syndrome.") which we squashed immediately. ;) Would I give Kennedy this "cure" for Down syndrome to make things easier for her?
I don't know.
Like most of my friends, I'm torn. I absolutely adore Kennedy for who she is. Her personality shines wherever we go. She is silly and spunky and sassy. She's full of attitude and determination and strength beyond measure. She is stubborn which can work for or against her on any given day, and she loves with her entire being. When she gets excited about something, you know. And the people in the next town probably know too, because her squeal of delight is not one that goes unnoticed.
When I think about the future... and Alzheimer's disease... and shortened life span... it scares me. If I could take away the threat of THAT, without changing who she is, I would in a heartbeat. No question. It's going to be interesting to follow this project and see the results they produce in the years to come. For now, I'm enjoying every moment with this girl... just the way she is.