Gray is a Big Unknown

I've read about a cure for Down syndrome. This is astounding news. The premise being that kids with Downs are born normal, but neurological memory deficits prevent these kids from collecting learned experiences, resulting in delays.

Science is nothing if not interesting.

Scientists have realized that certain drugs will boost norepinephrine signaling, thereby allowing kids to collect and modulate information. This would mean, of course, that there would be a vast improvement of cognitive functions.

You know that part of Down syndrome includes mental retardation, right? And this is helping to overcome that part of the disability. Awesome doesn't even begin to describe it.

This would most definitely help with things like potty training, and book learning, and grasping intangible concepts. This would be life changing for not only the kids (or adults) with Down syndrome, but for their care takers as well.

But here's where I'll put in a plug for being the worst parent ever.

As far as I can tell, Micah doesn't seem to mind being Micah. He can't talk, so I can't ask him if he feels slighted by fate. But I know from parenting him that he is absolutely 136% sure that he can do everything that his brothers can. And for the most part, he does.

And I know from parenting him that he's a very happy little boy. He doesn't seem to be frustrated by the fact that he has Down syndrome. He's not sitting around depressed and moping. He's not ashamed of who he is and refusing to go out into the public eye. In fact, much the opposite is true. Micah loves being Micah. He makes friends everywhere he goes, he's happy in almost every situation, and he lives life to the fullest.

There are many days that I wish I could be as well adjusted as my handicapped son.

So how much of his persona comes from who he is, and how much comes from his disability? If you've spent any time around people with Downs, you'll know that many of these same wonderful qualities seem to go hand in hand with the syndrome.

So if I were to change the way Micah's brain works so that he could someday live independently, or mainstream in school, or talk - would that change who he is? Would cognitive retention also tell him that not everyone is his friend and he needs to be cautious and mistrusting of people? Would he learn, like everyone else, that life is unfair and he has a right to grumble for getting the short straw?

Would he not really be Micah anymore? Because if that's the case, I wouldn't like that at all.

My son was born with a disability. It's a part of who he is. I can't change it, and he can't change it. We have both accepted it. I applaud science for continually trying to find cures and improve lives, but I know that I would have to think long and hard, and somehow find a way to consult Micah about it, before I'd make a decision in favor of curing his Downs. Even one part of it.

We're all entitled to our own thoughts on this, but in the end the choice is mine to make, and Micah is the guinea pig. That's a game with high stakes, and one that I'm not willing to play without a lot of prayer and heavy consideration.

And yet, science is amazing.


Flea said...

Science is amazing. But it can't define what makes Micah so amazing. It can only take a whole and break it down into its parts. Good for you. :)

Logical Libby said...

You are hardly the worst parent ever. You are wanting what is best for your son. If "curing" his condition meant losing parts of him, that wouldn't be best.

My name is Sarah said...

This is Joyce. I read about that today. My response, yea here we go again. In Sarah's life, something like this has surfaced at least every 5-6 years. I've yet to see anything tangible produced and now that she is twenty we would likely not be a good candidate anyway to prove someones point. But that's just it. What is the point? I think you've stated it very well. I'll keep Sarah just the way she is thank you very much! LOVE, love, love the picture. Your Micah sure is one photogenic child.

The Sports Mama said...

Wow. And how strange... I read something else that made me think of this, and think of you. I'm actually going to email it to you. It's called God's Under The Bed.

You are the most amazing mother I know. Who defines "normal" anyway? Normal is one of those subjective terms, that changes depending on your own world. Your world? Micah's world? Totally normal for you.

And why would you change normal? said...

Amen to that. Science is amazing. But, you're right, you'd be giving up a part of MICAH if you tried something to cure him of, basically, who he is.

Becoming Mommy said...

I beleive that science *IS* amazing. It's one of God's gifts to us to help understand his Creation.

And no matter what, Micah will always be your sweet boy. Nothing could change that.

Anonymous said...

Taking away children and adults like Micah may make things easier for their parents and caregivers, and it may help people with DS live more independent lives, but I can't imagine a world without the joy and innocence, the sweet and charming personality, and the blessing that is Micah. You? You are awesome.

Trisha said...

Science continually evolved - sometimes not for the better. I think Micah is perfect the way he is now and changing him would be horrible. However the idea of someday having no children born with Down's is intriguing.

Debbie Yost said...

I agree with you 100% although I'm not sure what article you are talking about. There is a parent in our area that believes strongly in this herb cocktail of sorts that is supposed to improve cognitive delays and I've heard others on the Internet rave about it. It all makes me nervous and I want nothing to do with it. My daughter is not a guinea pig either and I think anything that did come out would need a lot of testing before I tried it on her. Look at all the new drugs that the FDA approves only to be pulled years later because of some horrible side effect. If I had a life threatening illness then it would be worth the risk but not just to fix something that I may perceive as a problem but not really one for my daughter. Heck, I won't even pierce my girls' ears till they ok it. What right do I have to put holes in their heads when they are babies?

I think my husband put it best about the person I mentioned above, "she has never accepted her child has a disability" I think once we accept that, we can be happy with what we have.

Betsy said...

I like science. And I always think this...just because we can doesn't mean we should.

caramama said...

Betsy said exactly what I was thinking.

Also, I am reminded of the movie Gattica. Have you seen it? The future time period in which it takes place provides the option for parents to ensure their offspring have no genetic abnormalities (or something like that), and that makes for a very limiting world. It's a good movie and I often think about it in situations like this.

Roger said...

Science is wonderful, but God is great! God gave you Micah, the way he is because that was what God wanted you to have. If you start using Micah as a "Guinea Pig" you will lose a part of Micah that you may never get back. Micah is a wonderful boy (from everything I have read) and I don't think I would change a thing about him.

Plus, science can also be wrong and I wouldn't want to live with something bad happening.

I apologize if I overstepped here, it's just how I feel, and it looks like you may feel the same way. One of the coolest things that has ever happened to me, happened at mass this past Christmas. There was a man with DS sitting behind us, and when it came to the sign of peace, he gave me the biggest most heartfelt hug. It was awesome! Later, after mass before we left, I looked at him and smiled and he took my hand and gave it a kiss. He totally made my Christmas.

God has a plan, and I think that Micah figures greatly in it.

God Bless!

Karen said...

Betsy - very wisely stated.

Michelle said...

And being happy is what we all strive for. I totally get it. I hadn't heard about that research. It's intriguing, but I'd be hard pressed to be in the first (or second) wave seeing the success you are with raising such a happy boy.

Debbie in CA : ) said...

Well said, my sweet kindred friend, well said.

Michelle said...

It is an interesting topic, what was recently discovered. And there isn't any easy answer for it either. I don't think of it as a 'cure' though because you can't 'cure' the Ds - since T21 means having 3 copies of that 21st chromosome and you can't change your chromosomes...they'll always have Ds. But I do sometimes wonder...sometimes when I see Kayla struggle with a concept, or I'm getting frustrated trying to teach her something...would it be much easier if there WAS something that could 'fix' that disconnect in the brain. But like you said, if that is changed - how much else of Kayla would change?