I wrote the post below last October...but I'm revisiting it again today, because it really does speak to the issue of prenatal diagnosis of Down syndrome. So much is changing on the medical landscape..the new test MaterniT21 will be available in late 2011 or early 2012. Will we see a rise in the abortion rate for babies diagnosed in the womb with Down syndrome? It's hard to imagine, given that current statistics put that number at above 90%. But a test that provides a diagnosis in the first trimester will most certainly make it "easier" in the minds of many, to choose termination.
It's a slippery slope, but so far America seems content to make that inevitable descent, all in the name of choice. Once we as a society find that we can eliminate a whole category of humans from our midst, simply by targeting them through a first trimester blood test...what is to stop us from finding a "cure" for any other disability or condition? What if a test is developed for autism? Or Fragile X syndrome? Will we as a society choose to only allow perfect and problem-free babies to be born? Or will we, like other nations, decide that a "[Down syndrome screening] programme will be cost beneficial for the population and the health system ... the economic costs of screening outweigh the high costs associated with the long-term care needs of an individual with Down syndrome."
It's my hope that Lily's blog and so many others like it will make a difference in the way others view individuals who share her extra chromosome.
Quality of Life originally posted October 25, 2010
A year ago this month I was up late many nights, contemplating your future. The month of October was spent waiting for a second level II ultrasound to see if there was a change in your heart. The doctors had told us they were 90% certain that you had an AV canal defect.
In hindsight, that heart condition- or the prospect of it- was a blessing in disguise. It kept me focused on what was really important...
I hear and read so much talk about "the quality of life." Babies are aborted every year- millions of babies- because their parents don't believe their quality of life merits keeping them.
What is quality of life? Is it based on how intelligent we are? How able to relate to other people we are, whether we can read, write, drive a car? Who determines...the quality of life...
All those nights I spent awake, a year ago.. when I sat under our big picture window, while your brothers and sisters and daddy lay sleeping in other rooms...what I was thinking about, crying about, praying about, was not- quality of life.
I was just thinking about....life.
I wanted so much to know you were going to be okay.
Down syndrome- if in fact it was going to be an issue- we could handle.
It was your heart I prayed so hard about. I was so fearful we were going to lose you, Lily.
I prayed and prayed and asked God to take care of my baby girl. I told myself we would cross the special needs bridge- if and when we came to it.
And we are.
I lost count of how many nights I spent staring out at the stars in the sky, those stars that are without number. I stared at the moon, told myself- if God created all the heavens and the moon and the stars and this world- He could take care of us.
This universe didn't just happen. It was carefully designed, and looking out at the vastness of the night, the brilliance and beauty of those stars just reassured me- God was in control.
When my world seemed to be spinning out of control, when my heart felt like it couldn't hold any more scary news, God was there. He was carrying me through.
And somewhere along the way....your heart was fixed.
Was it a miracle?
Or were the doctors wrong?
There are other babies- many babies- who we've come to know along the way. Babies who faced heart surgeries, sometimes more than one. Would God choose to heal my baby's heart and not theirs? I don't think so. I don't think God plays favorites. But... it's also hard for me to deny that a miracle took place.
Because ultrasound after ultrasound showed no AV canal...no defect...no surgery needed...And when you were born and had your first echocardiagram outside my tummy- the doctors could find no defect.
So was it a miracle? Or just chance?
We won't know until Heaven, dearest Lily.
But I know that the waiting made me so very aware that your life was in God's hands, not mine.
And some might say that your quality of life is less than others.
But your daddy and I would disagree. Your brothers and sisters, your grandparents, your cousins and aunts and uncles, and even strangers who have come to see your sweet face here...
..have all seen a life that is beautiful and ordained and lovely and full of grace..and full of quality.
And it's late tonight, Lily. The rain is beating on my window as I type, and you are fast asleep in our bed beside me. And the moon is shining brightly behind those dark, rain filled clouds, and when I contemplate your future, I know...
...it is good.
Loving you always,
P.S. If you haven't had a chance to yet, please don't forget to vote HERE for Lily. Thank you!