Wednesday, July 31, 2013

Sounds of Summer

Chris, be quiet!  I'm talking to me.

Mom, I'm hungry!

Do you remember that book I illustrated when I was little?  It was called Pictures Invisible.
(Hmmm.  No, I don't think I remember seeing that.)

When are we going to the library?

I like playing Lightning with my invisible friends.  We each take turns and I play for all three.

What's for supper?

Hello, Mr. Findow!  My name is Cornbread.

I need more books to read.

No, Mom, this isn't a game Wade could play.  It uses four-letter words.  (What?????)

Is there any more meat?

I pray loads during the day.  I think I might be going overboard.

What's for dessert?

There, Mom!  I fixed your blender.  And the good news is that you can break it three more times and I'll still have fuses to fix it.

Blackberry Delight!  I wish I could make my grin bigger so I could better express my feelings!

Here I am, boys!  Keep an eye on me!

Can we read while we eat?

Eek!  Eeeek!  Eeeeeeeek!  I'm just practicing my girl shrieks.

How about a snack?

I'm Tigger, Private Ear.

I'm trying to learn about Black Holes but they keep using words I don't understand.
(Sort of like me learning about Boys.)

Mom, could you help me with this formula: R = 2GM/c² if G is the gravitational constant, M is the body's mass, and c is the velocity of light?

(Um, no, I can't.  But I think it probably has something to do with the Relationship of Food and Books being absorbed by Boys at the Speed of Summer².)


Monday, July 22, 2013

A "Cure" for Down Syndrome?

Interesting medical research has surfaced concerning the future of Down syndrome.

In the lab, researchers have been successful in shutting down the extra chromosome that causes Down syndrome. By injecting a gene called Xist into a human cell, the function of the extra chromosome can be silenced. The procedure has not yet been tried in full human bodies, although testing has begun on mouse models of Down syndrome.

Experts are calling this a landmark finding, technological breakthrough, and hope for the future.

But among parents, feelings are mixed.

They speak of excitement over the possible removal of health risks like leukemia and dementia, but express unease over the thought of changing what makes our children unique.  One parent questioned whether this would be forcing society's expectations of what constitutes a "worthy life" on a group of people who are otherwise happy and satisfied with their lives.

And then there was my favorite response of all:

I know this is a serious issue but I must admit that I am a bit distracted thinking about a mouse with Down Syndrome! If I were getting a mouse, I would definitely choose that one! I wouldn't change my Lori for anything in the world! We love all 47 chromosomes and wouldn't want anybody to turn off any of them! --Robin

Like others, my feelings about this medical breakthrough are conflicting.  My thought process leads me, once again, to the question I have never satisfactorily answered:  

Is Down syndrome something Wade has or is it something he is?

While I know that an extra chromosome does not define him or his potential to contribute meaningfully to society, I still find it hard to separate that 47th chromosome from the rest of his being.  In many ways he is like us, his biological family; in many other ways he is like those with Trisomy 21, his chromosomal family.  I cannot separate the two and still picture the whole person of Wade.

And so I wonder.

Would silencing the chromosome also silence the unconditional love that I admire?

Would it change the beloved way he runs a bit awkwardly like a lopsided leaf fluttering in the wind?

Would it make his speech easier, but his language tarnished?

Would it impair his delight in the common, his gratefulness for the least?

Would it take away his extreme cheerfulness in the (very) early morning?

Would it trade his inherent trust for the daily fear that stalks the rest of us?

Would it remove his gift of innocence and replace it with a sophisticated knowledge of evil?

Would it silence the familiar and give voice to a stranger?

Would it censor the way he says suddenly and often, "I love you too, Mom" for no reason, no reason at all?

Would an easier life be worth the price?

And I know in my heart that if  those questions are answered with yes, then the price for a "cure" is one that is too terrible to pay.