Wednesday, January 26, 2011

Better Off

Today I am remembering who I was 9—almost 10—months ago, before Roo; and who I was about 7 months ago, before Down syndrome became part of our vocabulary. She was a much different person. Her life, while far from simple, was simpler than the one I lead now. She worried about how many activities her children are/should be involved in, how many fruits & veggies they'd eaten that day, and how much sleep they got the night before. She didn't worry about when they would sit up or learn to talk or use the potty or whether they would ever be able to live on their own.

Sometimes I miss her.

But that girl didn't have the privilege of knowing what I know now—the complete and utter joy of spending a day with my Roo. The absolute excitement that I feel every time he hits a new milestone. The freedom that comes from letting go of accomplishments and comparisons, and truly just loving my child for him. And we're just hitting the tip of the ice berg. We have so many more joys and trials and victories to come.

Yesterday, Patti at A Perfect Lily shared an article that she had read. The article states that a non-invasive test will soon be available that will tell women definitively if their unborn child has Down syndrome, and it ponders what will come of this new development. Already, 92% of babies who are diagnosed with Down syndrome in vitro are aborted. That's a huge percentage, but keep in mind that most women don't opt to have the tests done because they are invasive and risky. Once a non-invasive test becomes available—and likely covered by insurance—how many women will have the test done? And will the percentage still remain so high? In fact, the title of the article asks the key question: Will babies with Down syndrome slowly disappear?

Keep in mind, friends, that we're not talking about a way to cure Down syndrome or prevent it. We're dealing with a way to get rid of Down syndrome—and really, to get rid of the children with Down syndrome. I know firsthand that finding out your child has Down syndrome is not exactly joyous news, but this… this makes me sick to my stomach. The article raises good questions—how far do we take this? Should parents who really want a girl be able to abort a boy? What if a test indicates that the child is likely to one day get some other disease, like cancer?

I actually appreciated the article. It didn't condone—or condemn—the test or what parents choose to do about it. It just presents the facts and raises some interesting questions. But Patti shared a comment that was posted below the article, and I haven't been able to get it off my mind:

If you can prevent suffering, wouldn't you? Perhaps something like Type II diabetes -- a disease that is usually adult-onset and easy to manage with proper attention -- wouldn't be worthy of an abortion, but something as serious and disabling as down syndrome? I know that the individuals who have it often lead relatively good lives, but they die young and often suffer quite a bit during their lives.

I would urge the parents of these children who advocate against testing or termination upon a positive test to examine how much of their opinion is based upon their own need to care and love for their child. Yes, your child is likely wonderful and kind -- most people with down syndrome are incredibly nice -- but are all the struggles they go through worth it? Wouldn't it be good to abolish something as clearly problematic as down syndrome, to effectively cure it?

"Are all the struggles they go through worth it?" Wow, I truly am just speechless. I have been sitting here for several minutes, trying to put to words the emotions and thoughts that are spinning around in my head.

Yes, people with Down syndrome are more susceptible to certain conditions and they have some delays and life isn't perfect for them. And absolutely without a doubt if I could I would take Down syndrome away from my Roo. But I would never take my Roo away. And it's not because of my own need to care for and love him. It's because he is an amazing person who is exactly who God wanted him to be.

Life is hard, friends. People suffer. People with and without Down syndrome. And sometimes people with DS have health problems and short life spans—and sometimes they don't. And sometimes perfectly "typical" children have health problems and shortened life spans.  And it's sad and we wish that suffering didn't happen, but life without suffering... well, it just doesn't exist.

And sometimes I suffer and I wish someone would take it away… but then I get through it, and you know what? I come out a different person. A better one.  I may sometimes miss the girl that I used to be, but I am a better, stronger, deeper person than she ever was.

So would Roo be better off without Down syndrome? Mmmmm… sometimes I think he would, but sometimes I think Down syndrome is going to make him a better person than most people I know. One thing I know for sure, this world would not be better off without him. It will be better because of him.


Missy S said...

That comment makes me sick to my then anytime a child is sick, has a chronic disease or disability they would have been better off never having been born? What a sad world that would be. I lived for a short time with the very real belief that my son had a chromosomal disorder. 2 possibilities meant that he would not survive...the third and least likely was that he would have Down's. Oh how we PRAYED that he would have the third. A baby with Down's...we could love, and raise, and marvel at watching who they become and what all the accomplish. He did not end up having a chromosomal disorder at all...but for those 72 hours, I longed to hear that he had Trisomy 21 because that would mean that I would still get to bring a beautiful, special, and wonderful human being into this world.

Wren said...

Makes me so sad to think about...I couldn't even finish the article! Just this morning Sutter did his first 4 point crawl...he only went about 3 or 4 "hand knee" movements, but to watch him finally figure it out was AMAZING and brought the biggest smile to my face and the happiest tears to my eyes. It was the best feeling ever! Sure we have struggles but the rewards far out weight those and I simply couldn't imagine Sutter not with us simply because he had an extra chromosome!

Autumn Manzo said...

Katy, you hit on the main point that many people without faith IN GOD fail to see. All life is valuable, and all life includes some amount of suffering. But we are far better to have lived and experienced it than to avoid it. And I thank God that we are all different and unique and can learn so much from one another. Our world just would not be as rich without children like your son. God bless you and the amazing call He has on your family to STAND UP for every precious life.

Elisabeth said...

Love your last sentence! This world would not be better without our children. It will be better because of them.

Thanks for sharing!