Sunday, August 11, 2013

Would You Take It Away? (Part 2)

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.


mary said...

She is perfect. No matter what God. Bless u all

Anne B. said...

I agree with Mary. Kennedy is perfect just the way she is. Like you, I could follow that with some "howevers". It's almost impossible to think of this without having a whole host of questions answered. I jumped to get my daughter the medical attention she needed in order to give her a better quality of life...even life at all. But the treatment was not a cure and it caused many other problems down the road.....even took her life a mere six years later. These questions are hard. I pray that God, the creator of all, would guide this research and our hearts. After all, he never makes mistakes!! And Kennedy is his beautiful creation!! (((HUGS)))!!

Debbie @ Three Weddings said...

I've thought about this a lot too and I go back and forth. Obviously, like you, if I was guaranteed that it would help her cognitive delays and speech but not affect her personality I would in a heartbeat. But what about her personality? I love her just the way she is. Like Kennedy, she lights up a room. Even at this very moment as she throws a temper tantrum because she wants to continue to play wii but her sister wants a break, she is precious just the way she is. I think about people with manic depression and how they hate taking medication because it makes them "fuzzy" and/or interferes with their creativity. Would the "cure" do the same to my beautiful little girl? Even if it does, is it worth it to help her live on her own and be more like her peers? It's not a decision I make lightly and one that will be made after much deliberation and research. But it looks like it's at least 10 years down the road or more so I can at least breath easily for the near future.

Angel The Alien said...

I'm sure there are a lot of arguments for eliminating Down syndrome and other special needs. For instance people could say, "There would be no more need for special education because all children would be able to learn." What scares me is that, when would it stop? So, okay, there's no more Down syndrome or autism or cerebral palsy or this or this or this. Now lets eliminate all types of learning disabilities... those children must be "cured" too. And now who needs to be cured? Children who just suck at math, or have difficulty reading? Children who aren't good athletes?
I know I'm exaggerating but it seems like something would be missing from life. I'd prefer they "cure" the things that cause people pain, like heart conditions or leukemia... things that also effect kids with Down syndrome... instead of curing the condition itself.

Lynn said...

Hadn't heard about this. Obviously you don't have to make any decisions right away and it might come down to the "cure" being a process you wouldn't want to put Kennedy through anyway.
Know that I'm always praying!
Psalms 70:1, 4-5 Make haste, O God, to deliver me; make haste to help me, O LORD. (4-5) Let all those that seek thee rejoice and be glad in thee: and let such as love thy salvation say continually, Let God be magnified. But I am poor and needy: make haste unto me, O God: thou art my help and my deliverer; O LORD, make no tarrying.
My email address

vanillacaramelbrownie said...

I wonder how I would feel if I woke up one day being a completely different person...How would I handle that? How confusing would that be? I have a sister with ds and I often think about this...but I always end up thinking how much I love her....and it wouldn't be fair to change who she is just because I don't think I can handle her condition. (Sorry if I choose the wrong words, but english is not my language.)
There are things I would like to change (I would like her to speak more, I would like her heart to be healthy...)but I don't think taking down syndrome away would change those things...

Kathy C. said...

She is beautiful.