Who defines quality of life?

I read a lot of blogs written by moms and dads of kids with Down syndrome.  It's a form of therapy for me to see the lovely faces of the (usually) smiling kiddos, surrounded by their loved ones, going about their very "normal" lives.  If I can ever get my act together, I'll post pix to this blog and make it more public so others can see my lovely kiddo too.  She really is a charmer.

I posted recently about her behavioral challenges.  That is a big issue in our lives, but only one small portion of who she is and what her life is about.  She is also friendly, a dog lover, obsessed with Veggie Tales, enamored of anything pink, up for adventure at all times, a great hiking companion, an ever improving talker and reader; and someone who will brighten your day at the drop of a hat.  I could go on, but then I'd be boasting.  I know other moms and dads out there are pleased with their own lists of what their kids can do too.  And, when I say that, I do not mean only the so-called abilities of their children.  All children offer something to the world, no matter how complicated their lives seem to be to outsiders looking in.  

We've all been reading more and more on the topic of the high rate of abortions in prenatally diagnosed babies with Down syndrome.  Up to 90 percent is the latest statistic I've seen.  What this suggests is that there are far too many expectant parents out there who do not have a clue what Down syndrome is and how it can affect the child the mother is carrying.  They have no knowledge of the broad range of "abilities" in this community, and they will miss out on the many gifts their child will bring to them, no matter what.  This also suggests an EPIC FAIL (otherwise known as a total failure, or a failure of spectacular proportions) on the part of the medical establishment to offer accurate information and supportive advice to the parents when delivering the prenatal diagnosis.   What is wrong with this picture?  Why aren't doctors and other caregivers trained to understand that the diagnosis of Down syndrome is absolutely not a reason to terminate?  I won't even go there in terms of prenatal diagnoses that mean certain death, and/or extremely, medically fragile and complicated lives.   If you believe abortion is wrong, then it is wrong in all cases, no matter what.  If you believe a mother should have the right to choose, then by all means, make damn sure she has the information and support with which to make an informed choice.  

I cannot speak to what it would feel like to receive a prenatal diagnosis.  I had an ultrasound at 20 weeks that appeared "normal" and then, later, out popped little Miss, 9 days early, ready and willing to give me the education I needed to be her Mom, and opening my heart to all others in this world who come into the world with extra struggles. 

I'm so tired of hearing of parents who terminate because they just know they couldn't handle a child with "special needs."  Trust me, every child has "special needs."  They will all test us, challenge us in ways we could not have imagined before becoming parents, and break our hearts at times.   To try to shelter yourself from "imperfection," is to refuse to live, to refuse to embrace what it is to be fully alive.  

I would not trade my child for anything, well, make that both my children, even the so-called typical one (!); and I would not change them if I could.   What I would change is the culture around us that sends out a message that we can somehow live lives free from challenges, filled with "perfect" children, and never having to face an uphill battle.   That is a fairy tale that none of us have actually experienced, and it's time to move on and to embrace human diversity in all its many, wondrous forms.  We are truly all wonderfully made.