Tuesday, June 16, 2009

No Drive Through Life and Wrongful Birth

I have blogged before that many years ago when I was single, years before my daughter was born with Down syndrome, I believed--and told people--that I thought I would be fine if I ever had a child with a physical disability, but not a cognitive disability.

I have always pictured God hearing my little declaration and rubbing his metaphysical hands with glee. I picture God knowing that that that thing I dreaded would be one of the best gifts of my life. I picture the anticipation of my being surprised by joy I could not even imagine making Him smile the way I smile about the Christmas presents I have hidden for my loved ones...

When my daughter was born we had a few hours of shock and I was given a quick lesson on disability philosophy by a dear friend of mine who has CP, and another by the guy who answered the phone for our local DS group whose first word to me on hearing our news was, "Congratulations!"

Then we were on our way.

Having our third child meant all the joy and sleeplessness any new baby brings to a family.

That she has Down syndrome meant that and so much more. We were introduced to the parallel world of disability and all of the amazing folks who live there, we got to learn about and appreciate the hundreds of intricate steps involved in any piece of human development, we had to be resilient, we had to be creative, we had to learn new skills, we had to be intentional and 'attentional' about all manner of things we never even knew existed before.

Some things were easy and some have been very difficult. But I have indeed learned that things that are easy are often not as valuable as the things/relationships we must invest in.

We couldn't have a drive-thru life--we experienced the slow-food alternative. We have layers of complexity and relationship that have meant we must always engage with our life and as Robert Frost wrote, "That has made all the difference."

These opportunities for learning and growth have enhanced the lives of our whole family.

Beyond this, the things I have learned have given me the opportunity to give back--to share the things I am learning with others along the way. I have learned advocacy and public speaking and gained a sense of purpose that I never had before.

My husband and other children have benefitted as well. The common purpose of parenting a child with a disability has enhanced our family life on all fronts--the fact that Jenn is a great kid makes it fun too!

My older children have a sense of justice and an awareness of social issues and have had the opportunity to speak out in many forums that other kids their age have not. They have both taken an active role in helping Jenn learn and grow and the responsibility and maturity they have developed is already helping them at school and work as the begin to make their way in the world.

Last week a woman I met commented to me about my daughter with Down syndrome saying, "Well, sometimes we don't get the life we ask for so we just have to make the best of things..."

"Actually," I replied, "I have a much better life than the one I asked for--I wouldn't change a thing!"

She seemed very surprised.

I went home and told my kids about my conversation.

My daughter said, "How do people not get it?? I actually feel sorry for families who DON'T have a kid with Down syndrome!"

I laughed because, to tell the truth, so do I.

Now, I had this all written and that line was supposed to be the end until I read this article.

A family in Oregon is seeking big bucks from the doctors who did not diagnose their toddler's Down syndrome pre-birth. They state unequivocally that their daughter has changed their life and they would have aborted her if they'd known.

This article made me physically ill.

First of all I feel heartbroken for the family whose experience with their daughter has not been as positive as mine.

Secondly, it frustrates me that this story has made the news. My story about the positive impact disability has had on my life will never have the credibility with our ableist society as this family's story will because our society fears disability and WANTS excuses to opt out of dealing with disability and those who have them.

I know families whose experience with their typical children has been extremely unpleasant as well for various reasons, this isn't necessarily a disability issue, but disability will undoubtedly be blamed.

Thirdly, I am desperately saddened for that little girl and her siblings growing up in a town that knows that her family would have aborted her if they'd known her. Who will want to babysit her or be her friend? What will kids say to her and her siblings on the playground? And how will this stated need for perfection affect hers and her siblings' sense of security with their parents? I can't imagine any amount of money that would be worth the cost.

Picture from here.


datri said...

The thing that irritates me the most is the $14 million. It just perpetuates the myth that having a child with a disability will bankrupt you. I know that this was a major concern when Kayla was born. Kayla doesn't cost more than the typical kid. And if they were so horrified by this child when she was born they should have just put her up for adoption.

rickismom said...

I always thought (despite my MIL's dire warnings that if I would continue childbearing, I would get a child with DS)that G-d would not give me a child with DS, because I "couldn't" handle a child with Mental impairment, only physical.
Well, THANK G-D , HE gave me the strength I needed right there on the delivery table. My first thought was :
"G-d, HOW could you do that to me and let my MIL be correct?!??

My second thought was: "We have done no sin, and we will LOVE and be HAPPY with HER. " (Ricki's real name means "happiness " and "prayer" in Hebrew.)

I know that I would not have chosen this path initially, but I shudder to think how poor my live would have been without this "journey".

Terri said...

I agree, datri, though Ruth at Wheelie Catholic points out that some disabilities are more expensive than others. My daughter with Down syndrome is not my most expensive child because she is not an Irish dancer and has not gone to college--yet. :) Also because she has been pretty healthy and services in our area are pretty decent--we would PAY if they were not (though $14 million, really?)

I agree, rickismom, this journey has been unexpectedly awesome... Glad I'm here (and glad you are too!)

Anonymous said...

Any chance that someone in OR will report the parents to CPS for stating they don't want their child?

Physically ill is how it makes me feel, too. I hope that story gets out into the DS network, Terri.

The comparison of expense is very interesting and worth more blog posts, please. Most people are sympathetic to parents who state that expense/insurance dictates whether their children get a particular treatment. I like the Irish dancing and college comparison.

cripchick said...

"'How do people not get it?? I actually feel sorry for families who DON'T have a kid with Down syndrome!'"

:) :) :)

Jackie @ EasyStand said...

An eye opening post, and I also feel saddened for the family of the child who is pursuing the lawsuit. Every child is a gift.

Terri said...

Barbara (therextras), I am worried for that family and don't think money is the biggest thing they need... And I agree, the issue of cost is interesting. Every kid with interests, goes to college, has a health issue or accident, or (on the other side of things) has a brush with the law, costs. Life can't be controlled for cost, nor should it be if you ask me.

I know, cripchick! :) :) :)

I agree, Jackie, while will surprise you and demand growth from you in many ways, every child is indeed a gift.

thecatsmeow said...

This post really gave me some food for thought. As I grew up dealing with the consequences of having survived an early tangle with shunted hydrocephalus, I remember being asked on more than one occasion something along the lines of, "What would you do if you were pregnant and found out the baby had hydrocephalus?" I'm sure they all expected the answer to be something like, "Have a therapeutic abortion", but they didn't realize how repulsive that whole concept was to me, particularly since if it had been left solely up to the doctors, I would not be alive to write this comment. (Doesn't matter much to me whether you're inside the uterus or outside, the principles are similar.) Usually my response was something like, "After I got up off the floor and recovered from the total shock, I'd tell them to keep careful watch over it and then if the baby survived birth, operate. No question." Sometimes they looked at me like I had two heads. (No, just one with some funky ventricles, LOL!)

Similar rules would apply to something like DS as well; DS children who don't have serious congenital heart defects or digestive malformations can be generally as healthy as "normal" kids, and I don't see DS in and of itself as a reason for an automatic termination of a pregnancy. "Wrongful birth" is a horrific, misguided concept that should have no legal standing and certainly should not result in multimillion dollar winnings for parents of children with disabilities. Just my two cents as someone who was once such a child.

That's why I return...your posts always make me think! (Though there are times when I need to STOP thinking, actually...but perhaps that's a post for my own blog!)