Friday, November 21, 2008

" I wouldn't want to live like...that"

Many times as Ciarra's mom, I have talked to people who would oppose kids with Down syndrome ever even being born. Moms who have aborted, Doctors who think it is somehow an ethical duty to rid the world of kids like mine. Sometimes it is hard to view the world without rose-colored glasses, because taking them off means seeing that society as a whole deems kids like Ciarra less-than, undesirable, disposable.

New tests to detect it in utero are being fast tracked to the world, the race to be the first with a 100% effective tool for detection and elimination is on. Soon, kids like her, with their gently slanted eyes and their supple and soft little bodies, will be rare. Sure, many folks will continue to choose life for their babies. But society seems to think the best thing to do is be rid of them, and how long will it be until we hear "We can't help you, you CHOSE this for your child"? I suspect not long. That we could have prevented these incredibly special lives from ever seeing the light of day ("it's painless" "just a blood test" "no risk of losing a normal baby!") will be seen as poor parenting, or worse.

I have lived long enough now to have seen some of the worst the world can offer to those born "different" or made different by some travesty in their lives.

Baby Doe, starved to death because he happened to be born with Down syndrome and a 100% repairable feeding issue his parents chose not to treat. His life was seen as not worth living, but his death gave us new laws that granted some care and oversight to those born disabled and needing care.

U.S.C.A. TITLE 42, CHAPTER 67, Sec. 5106a. Grants to States for child abuse and neglect prevention and treatment programs:

(B) an assurance that the State has in place procedures for responding to the reporting of medical neglect (including instances of withholding of medically indicated treatment from disabled infants with life-threatening conditions), procedures or programs, or both (within the State child protective services system), to provide for--
(i) coordination and consultation with individuals designated by and within appropriate health-care facilities;
(ii) prompt notification by individuals designated by and within appropriate health-care facilities of cases of suspected medical neglect (including instances of withholding of medically indicated treatment from disabled infants with life-threatening conditions); and
(iii) authority, under State law, for the State child protective services system to pursue any legal remedies, including the authority to initiate legal proceedings in a court of competent jurisdiction, as may be necessary to prevent the withholding of medically indicated treatment from disabled infants with life threatening conditions;

Terri Schiavo, whose agonizing death captured the nation for 14 days, and made us all silent witnesses to court-sanctioned discrimination, if not murder. Why? Because despite her smiles, despite her seeming reactions to the mother who adored her, her husband and the state decided her life was not worth living.

And then there is the case of Haleigh Poutre, a beautiful little girl whose stepfather beat her so severely she was brain-damaged and seen as being in a vegetative state. The courts ordered her life support removed, too, but Haleigh fooled them all. Her will to live kicked in the week before life support was due to be taken off, and her recovery since has been miraculous, although she will likely never walk again, and her brain damage has done so much damage that many people would procliam they "wouldn't want to live like that." Apparently Haleigh wants to, she seems to enjoy her life, and is making steady gains. That she will never be a college professor or Rhoades scholar is sad, but then, how many of us will be, either? Haleigh's life is just that, Haleigh's.

Who are we to decide whose life is "worth living"? Stephen Hawking lives his days in a body ravaged by ALS, and yet he is seen as a scholar and brilliant mind. He, according to society, is deemed "good enough".

Is it because he has a mind still sharp as a tack, that he never suffered from being less smart, just less able? Why do we allow this judgement to pervade our thinking, that smart is everything?

I cannot fathom a world without the Haleigh's, the Terri's, the Ciarra's, and the Stephen's. We would be the lessor for it. Their need for us to be tolerant, sensitive and able to see their higher graces despite their struggles makes us a better people. We all need to remember that we are a heartbeat or a breath away from being in their shoes, and treat them as we ourselves would want to be treated. With dignity, respect, and kindness. Because God let them live, just "like that". And that is plenty good enough for me.


tara @ kidz said...

I honestly don't remember how I came to your blog, I think through praying for parker. Anyway, I'm so glad I did. I love all the pictures of your little girl. I loved this post. I loved the best friends forever post. I might peak arounda bit more. ;o) Thank you for sharing!

My Opposite Boys said...

Haleigh is so strong it amazes me. My cousins daughter was friends with her and lived down the street from them. The step father just got sentenced didn't he? Just scary.

Alexandra Mikaela - Awareness Warrior said...

AMEN!!! =)