Thursday, July 12, 2007

Not Ideal

Today I read a post on a forum (specific to Agenesis of the Corpus Callosum [one of Bubba's diagnoses]) regarding the termination of a twenty-something-week-old "genetically and physically healthy" fetus because of the "grim" MRI findings. The fetus was suspected of having agenesis of the corpus callosum.

While I firmly believe in the right to choose termination, it saddens me that these parents are making this choice based on limited information. The poster stated the choice was made based on perceived limitations of "quality of life" and other research.

I pass no judgment as I remember thinking a long those same lines long before I conceived Bubba. But when I was offered tests to determine whether or not my baby had Down Syndrome or other syndromes, I declined, stating "It wouldn't change the outcome." When issues began arising when I was 32 weeks pregnant with Bubba, we did some testing, but only for birth preparation and to provide the best chance of survival. We were scared shitless, but we couldn't love that boy (we called him 'baby Z') more.

During the first year or so we faced the demons of "the ideal." And we continue to face those demons as society preaches "right to life" but cowards when it comes to all individuals having the inert right to equality and their desired quality of life, by their own definition... we are lucky right now. We have found ways to get the support we need to allow our family to have a good quality of life. We have found supports in friends and family; we have decent medical, dental, and vision insurance. We access resources for the community and education. Not everyone is so lucky.

Perhaps life begins at conception, but supporting life doesn't stop the minute the baby is born. Babies grow up. Some with mental illness, some with physical disabilities, some with extreme intelligence, some with super powers. There are infinite combinations and possibilities. Some of this may be genetic, congenital, post injury from a car accident or military battle, getting older, or whatever.

There are a lot of people out there choosing to terminate life (not just before birth) because disability is scary. Disability is touted as a significant cost to society, that persons with disabilities cannot contribute to society or have a meaningful 'quality of life.' Until this attitude changes, people are going to continue to choose termination.

To me, giving people reasons to choose not to terminate is much better than just telling them they can't.

1 comment:

Emily, as some know me said...

This is a beautifully said piece. I agree completely and couldn't have said it better myself.