Hard to Find the Words

You can probably tell by the fly by the seat of my brain writing style that I usually just plow right ahead with whatever I am thinking about.  Today, I am having trouble.

I came upon a website in a roundabout way yesterday that left me with so many sick and angry feelings, that I had a very hard time digesting what I was reading; in fact, I still haven't quite reconciled all the feelings I had.  I might never get to that point.  I am not going to post any links to it, here, but a tiny bit of searching will lead to what I am about to reference.

Someone had posted a question in one of the groups I am involved in asking what kind of support we had when we found out that our children would be born with Down syndrome.  I read through the answers, seeing much of my own experience, until I came to one that said something about being referred to a support group for women who ended their pregnancies.  

I was a little bit taken aback by the assumption of this doctor, referring a woman with a still living, moving fetus in her womb to a support group like this, but quickly recovered.  The doctor might have been jumping the gun, but women can and do end their pregnancies for all kinds of reasons.  I can understand needing a place to work through their feelings.

I am not saying that it makes me happy that a woman would feel the need to end her pregnancy based on a T-21 (Down syndrome) diagnosis.  I'm just acknowledging that it happens.  I don't wish to drag these women through the mud.  There are so many complex issues to the dilemma that factor in:  Lack of updated information, fear, outside pressure, stigma, serious heart conditions, just not feeling "strong" enough... I get it.  I really do.

That a woman might make this decision at all is not what bothered me.  At least, that's only a small part of it.  It does bother me because I take it as a reflection of how people feel about my living, breathing kid.  I take it as a slap in the face; but I know that it truthfully has nothing to do with me and my kid and everything to do with what that woman feels to be true for her.  It isn't about me and I don't wish to make it about me.  It's just hard to separate, sometimes.  Her body, her decision.  I understand and agree that this is the way it should and must be.

What really bothered me was reading how some of these "procedures" take place.  I read accounts of women who got a T-21 diagnosis at 20, 24, 26 weeks, who decided to end their wanted (until this point) pregnancies.  Many of the stories recount tiny babies born alive (after induction) only to die in their parents arms.  Babies taking a few breaths, just to die, as their parents whispered to them that it was for the best.

It was for the best, they told themselves and their babies and they took inkings of their footprints and pictures of their dead children and had them cremated and put in tiny little urns as if they just happened to die and they, as parents, had nothing to do with that process.  They talked about being sad over their "lost" babies.

This was where I began to lose it.


I began to think of all the premature babies I have known and the lengths that their parents and doctors had gone to to keep them alive.  Why does one baby born accidentally at 20+ weeks get all the medical intervention we can throw at them and another get to gasp and die?  

I thought of friends who had had miscarriage after miscarriage; who truly LOST their children.

I began to think of the friends I have whose children are battling cancer and kids who have died from childhood cancer and the Grand Canyon scale difference between these children's parents and those that I was reading about.  

I read one account where the parents justified it saying that if their child had been in an accident and was on life support, they would have had to make the same type of decision.  I completely understand this logic if a fetus' condition is incompatible with life.  There are plenty of complications that fall into this category, but Down syndrome is not one of them.  Yes, babies with Down syndrome can have major heart conditions, kidney issues, feeding issues...the list is long.  But most of these issues are correctable.  With intervention, the vast majority of babies born with T-21 will not just live, but thrive.

There is also plenty of debate about how much intervention is too much and I completely understand it.  I've often thought about babies I saw when my son was in the hospital that had never in their short lives left the ICU or been off a ventilator.  Some were three and four months old.  It is worth noting that none of them had Down syndrome.  One baby in particular caught my attention as he was learning to smile around the vent tube that had been down his throat since he was born.  It was truly the saddest baby smile I have ever witnessed.  I want to cry thinking about it now, even fourteen years later.  I pondered over his suffering, for I have no doubt that he was suffering, despite his early, baby smiles.  Entering the world too early, with unripened lungs, into bright lights and needle pokes and tubes shoved down your throat is really no great way to come into the world.

I often wonder what happened to him.  

All this begs the question:  At what point does it become worth the fight?  Understandably, it is different for everyone.  I think about Christopher Reeve and his fight after he became paralyzed and dependent on a ventilator and a wheelchair.  I think about the people I know who are dependent on various interventions to live.  I wonder at what point they would feel like their lives were not worth living.  Mostly, I see people who are at peace with their circumstances.  Whether you want these circumstances for yourself or your child is mostly irrelevant.  Most of us will never know what it feels like to be in those shoes.

So, what of these parents who decide to let their children go?  At first, I read these late term abortion (induction and delivery) accounts with disbelief, then, white hot hatred.  How DARE they write about how sad they were!!!  THEY CHOSE TO DELIVER THESE BABIES TO THEIR DEATHS AND HELD THEM WHILE THEY DIED!!!  FUCK THEIR SADNESS!!!  

Then, I calmed down and started wondering where the line between abortion and straight up killing, was, because this didn't feel like abortion to me.  It felt like killing.  I began questioning my own pro-choice views.  I came to the conclusion that I am still pro-choice, but that the area of gray had narrowed, somewhat.  I have always found late term abortions troubling, but conceded that they needed to be legal.  I don't want women to be incubators for children they don't want and adoption is not the easy alternative that some would want you to believe.  Yes, it's an option, but not one that I would want forced on anyone.  There are plenty of kids languishing in the system, already.

In the spirit of full disclosure, I had an abortion myself, in my early twenties.  I don't regret it and I don't feel guilty about it.  The way I think about it, I might not have the kids I do now if I had carried on with that pregnancy.  I might have married that other guy.  In my view, I saved the beautiful family I have now by sacrificing those cells years ago.  Maybe you will call me a hypocrite.  Who am I to judge anyone?  I also have the benefit of hindsight working for me.  Women who chose to end their late term pregnancies because of Down syndrome don't have this luxury.  All they can see is NOW and the future is a scary unknown.  I'm sure that plenty of these women will hold up their "rainbow babies" (a term used for a baby born after a miscarriage, but apparently, also after an abortion) as justification for their decisions.  It's not my place to judge or question them.  I can only speak about my own feelings.

I don't know where to draw the line for anyone else.  It's not my right to draw that line.  All I know is that I am troubled by this discovery.  I am saddened and shaken that someone could think so little of a kid like mine, with his messed up heart and his humor and love of WWE, that they would let him die rather than fight, but again, I am making it about me and my feelings.  Hindsight might give us blinders.

I read an interesting blog post the other day; written by a woman whose son died from serious congenital defects after battling and suffering for the better part of his short three year life.  She wrote that if she had known what was in store for her son before he was born, that she would have had an abortion rather than put him through what he eventually did.  Again, hindsight in action.  Her story made my heart ache for her and I take her at her word, that she loved and wanted the best for her son; even if that meant not letting him live at all.

So, what is the difference?  You might be wondering.  The difference is that my kid and kids like him don't suffer from Down syndrome.  They are living and thriving into their 50's, 60's and 70's.  And I look at my son and wonder what about him is so horrible that you can't imagine being in my shoes.  And I am trying, mightily, to put myself in yours.  I was there, fifteen years ago and I chose my son. I realize that fact colors my every thought on the subject.

I don't wish to judge or condemn or ridicule or belittle anyone else's choices and I certainly don't want to become a spokesperson for the anti-choice movement.  I believe in choice.  I just know that I am troubled and that I wish to get to a point in our history that sees Down syndrome in a better, more realistic and hopeful light than it does now.