Thursday, October 3, 2013

Fix You

"Would you fix Dalton if you could?"

That is a loaded question.

The latest article on research of scientific claims can be seen here from The Huffington Post, .

University of Massachusetts researchers have found a way to shut down the extra chromosome that causes the syndrome in mice. I love how the article is brief to describe the test subjects as mice that have a "Down-like" condition. With a lot of big words thrown in, what it boils down to is the verbage of "Cure".

How one defines this cure may be left to the capable hands of those in Bioethics, but as a Mom of one very amazing little boy with this disability my heart first screams "Eradicate" and sees it as more of a threat than a victory for mankind.  The word victory becomes an inevitable kind of hyperbole for modern medicine.

October is Down Syndrome Awareness Month. Every day, if not only for the month of October, do many who dare look at my social media graffiti attest to the many shared pictures, videos, and amazing moments this family has had with one very exceptional member that has Down's Syndrome.

What if Down Syndrome Awareness is changed to a Memorial some day?

It won't happen.

When in Honduras, there was a family that I didn't have the privilege of meeting, but a friend on the trip snapped a picture of a very cute little boy, probably about the same age as Dalton. He also had Trisomy 21, and is living in the middle of no man's land on Boca Island. This spring I hope to visit again, and this time meet him. I assure you, this advancement has no probability of preemptively flooding all corners of the earth, whether impoverished dirt roads of Duyure or the strands of India to the vast landscape of Africa, or the orphanages in Russia and all over Eastern Europe.

There will always be someone with Down's Syndrome.

Jerry Risser, a Bioethicist wrote a compelling article on the notions of "Fixing" Down Syndrome from Trinity International University. Mr. Risser refers to the language used when describing a person who 'suffers' with Down Syndrome as a misinformed descriptive. He also warns that this also takes on the notion of eradicating a disease, and not the thought of robbing our society of a meaningful part of humanity.

If anyone has met Dalton, they rarely see suffering. And if you've met Dalton, you probably already knew this.

Within the first year he was born, the headlines were about the rate of which the unborn with Down Syndrome were being aborted. Dalton was featured in an article run through the Tennessean because we were a family who did not terminate his life.

After the article ran, I had people emphasize to me that my decision shouldn't be forced on women to keep their babies. I agree. It was my choice, and it's my hope that women are given the full spectrum, not just the bad. More than just the 'broken', more than just the absence of 'normal'. I'm still adjusting that word's definition, the world is still adjusting everything from social norms to the status quo. Screw the status quo.

When I spoke with a geneticist the first time after being diagnosed, my optimistic perspective was met with skepticism as she proceeded to show me what I can only describe as the worst case scenario. The pictures of individuals with Down Syndrome looked like they came out of a textbook from the 70's, and perhaps the worst case scenario should be presented. What I was lacking was the Best case scenario, the medical advances, the importance of being 'honest' (I'm a bit parentheses happy today) about how the quality of life for individuals with disabilities is vastly improving.

Frankly, I'm surprised that research is being done on how to extract the 21'st chromosome because of how fast and furious the eradication of these individuals with Down Syndrome has risen in the last decade.

What I'm not surprised with, is how as a human race we're quick to refuse 'Brokenness'.

These are scientifically flawed and broken babies. As if it's perfection that drives us to be exemplary and deserving of life.

You don't have to be a Bioethicist to understand how this kind of mentality is damaging, not only if you are a person with a disability, but just a person.

One of the most grateful things I am, is grateful for my children. They have goals, and will begin to create their own definition of success and happiness by what I set for them as the standard. The standard, has never been perfection and it is certainly not mediocrity either. Everyone has potential, and each has a gift. The pursuit of excellence is a hard left delineation from the expectation of perfection.

Dalton was labeled a broken baby, and through him shines a lot of Joy, just like that fiery opal that my Dad gave me 17 years ago, a living stone. That stone wouldn't be what it is if it had not the tiny broken fissures that allow it to reveal a fire beneath it's milky surface.

People are broken too, but what lies inside of them is what that brokenness displays. If it's joy, patience, peace, kindness, self control and so on with all of the fruits of the spirit they become evident through you. If it's the opposite, then that's what we see revealed beneath the present exterior. 

Yes, I have a faith that shapes my decisions and even my outlook on life and thank God I did when looking at that ultra sound screen for the first time at my broken boy. Thank God that when he took my Dad's life, and he succumbed to cancer he left me this opal to know better. Thank God for the broken things.

Because, it's the broken things that show what fixing can't.