Special-needs and choice

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Special-needs and choice


The "what might have been" and what one mother might have chosen.

On the site of late there have been a great many posts and debates in regards to what is "ethical" in regards to the reasons a woman might not choose to continue her pregnancy. Being firmly pro-choice, the reasons, for me, generally do not matter except to work to ensure that some of the reasons that are negative to women and families are addressed. Reasons such as domestic violence, poverty, lack of education or access to contraception are in dire need of attention- but in the end what matters is that the woman still has the right to decide if she wishes to continue a pregnancy or not.

 One of the reasons a woman might choose to abort a wanted pregnancy that seems to come under fire a great deal is if there is fetal defect. With the advancements in prenatal testing  the date of finding out there may be a serious issue has been pushed back- but so has the time that a fetus might be considered viable with medical advancements. Many conditions that might not have been treatable in years past have a better outlook, yet there may be less of a chance for births of children with these conditions to take place since advance knowledge may lead to the pregnancy being terminated.  So therein lay the conundrums of what conditions are "severe" enough to be "accepted" as reasons to abort. People melodramatically cry out strawmen of eugenics and playing god, but why should anyone have to justify their decision? Why, indeed.

 Even fourteen years ago when I was pregnant with my second child prenatal testing was nowhere near the accuracy of today. As a twenty-three year old woman with one healthy child already there was no reason for me  to have an alpha fetal protein test; there was a high rate of false-positives and the risks involved in a later amniocentesis at the time were greater than the chances of there being something detectably wrong. So it was when my daughter who is now thirteen was born with Down syndrome it was a complete and total shock. (I suspect, however, the military hospital where I had prenatal care suspected something, nuchal fold measurements were taken more than once, something I now know to be a marker for trisomy 21.) An Air Force colonel wearing BDU’s beneath his lab coat dropped the news to me like an atomic bomb.

I wished my child had been stillborn. I thought about giving her up for adoption if my then-husband agreed. What did we know about trisomy 21? These are the things they don’t talk about when people gloss over reality by talking about "trips to Holland" and "god giving special children to special people." I sure as hell didn’t feel special. I felt betrayed, angry. I mourned the loss of the child that could have been, and still do. I can’t imagine what it is like for someone to lose a child, and I would never demean their grief by saying they can "get over it" or "move on". Yet every day in the back of my mind that mourning is still there, because I know my beautiful little girl will never have the same opportunities that a "normal" child would. There is no "moving on". There is acceptance, and love for the child you have. There is advocacy and trying to live a normal life.

Sex. Abortion. Parenthood. Power.

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 The thing is, these feelings are the norm for parents of disabled children. It’s just not spoken of. We’re supposed to have this united front, this smile and acceptance of what life has thrown our way. We’re supposed to pretend to the outside world  that we never would have wanted anything different for our children. Pardon the French, but bullshit. If I could "take it back" somehow, I would. Nature, in its wisdom, doesn’t intend for conceptions with trisomy to survive. Most embryos with chromosomal anomalies are shed. Trisomy 21, or Down syndrome, is pretty much the only survivable triplicate chromosomal disorder  with the exception of sex chromosome duplicates. It is estimated that probably 2/3 or more  of conceptions with trisomy 21 are miscarried. 

I love my daughter with every fiber of my being. Yet I cannot say that had I it all to over again, had I known of the Down syndrome, that I would have continued the pregnancy that resulted in her birth. This outlook doesn’t win me favors in a lot of DS communities, but it is reality. If someone like me who has a disabled child can say they would not have chosen this experience, after having our wonderful children, how the hell can we EVER condemn a woman who knows she is unable to take on this burden for herself before there is even a child brought into the world? How "bad" does it have to be for it to be "ok" for her to recognize that she cannot cor will not be able to deal with this reality?

I know to many this will sound terribly selfish. Perhaps it is in some ways. But it is also humanitarian in others. When I was pregnant with my third child, there was a chance he had a chromosomal disorder- trisomy 18. This is a disorder incompatible with life. Most fetuses die in utero; if not, ninety percent of those that make it to term die within a month of birth. They do not attain any meaningful consciousness. Would this have been "bad" enough to warrant a late term abortion? I was prepared for this when I awaited the results of the amniocentesis. Would it have been better for me to birth a child that had no chance to live, for my other children to have a brother who would die?

I’ve rambled on I’m sure, and deviated from the original point, or perhaps not. The thing is, none of us have the ability to know what is going on in any woman’s head when she makes her choices. None of us have the ability or right to decide what she can or cannot endure, or what constitutes quality of life.  Nobody can step into her shoes and decide if her reasons are "good enough", or if it is "right" or "wrong" to make a decision based on her perceptions are for the fetus’ later life. I love my daughter… but I would love for her to have a chance for a normal existence as well.