Of the many reasons I have chosen to start blogging, one of the most important is another outlet for advocating for individuals with Down syndrome. In life there are some basic things we all need to grasp. One is that life isn’t fair. Don’t spend too much time dwelling on what is and isn’t fair when you were fortunate enough, by God’s grace, to have been born in the United States of America. Second, we can’t always choose what happens to us but we can always choose how we will react.
I didn’t choose to have a child with Down syndrome. I did, however, choose to have a baby and that always comes with risks. Having a child with Down syndrome is the hand I’ve been dealt, and I believe in an all-knowing God who knows what He is doing. I trust there are many reasons beyond the obvious ones for having the blessing of Rachel. In my case, I chose to have a prenatal diagnosis. I was of “advanced maternal age” (don’t you just love that?) and at that point in time, only women of advanced maternal age were offered prenatal testing as a standard. So while I didn’t make a conscious choice for my daughter to have Down syndrome, I did choose to find out if my baby had Down syndrome. Then, my husband and I made a conscious choice to have that child. Unlike many women who for many different and good reasons choose to forego a prenatal diagnosis, I chose to have prenatal testing. I knew going into the amniocentesis that if it showed my unborn child had Down syndrome, I would be told I had the choice to abort. But that was never my intent for having an amniocentesis. My intent was purely selfish and fitting with my personality: I like to be in control. I like to be prepared and for my family this was the best decision. I would do it the same way again. I do not believe that conflicts with the depth of my faith. I cannot say that anyone else should make the decision to have a prenatal diagnosis. I can tell you of our experience, but ultimately your family has to determine your own path. Many other families feel just as strongly that their decision to wait until delivery was the best route. I trust that if God is big enough to create the universe, He can surely work with either side of this part of the prenatal diagnosis dilemma.
Since my experience, there have been changes to guidelines for prenatal testing. Scientific advances declaring “earlier, less invasive, 100 percent accurate prenatal tests” early in all pregnancies have sparked great debate about prenatal testing for Down syndrome. This should be cause for great debate among all of us. Prenatal testing is a slippery slope for many, many reasons. We should all be concerned that people are receiving accurate information especially when it truly does impact life and death decisions. We should all be concerned about human rights and who judges which life is of value and deserves respect. Today I want to direct you to a blog piece in yesterday’s Washington Post by Allison Hassett Wohl. I believe she does a far better job than I could of outlining this issue. My hope is that you will read her blog Understanding a Down Syndrome Diagnosis and truly think about what is your role in this dilemma. When I speak to children and youth, I frequently tell them if you are not part of the solution, you are part of the problem. We should all pay close attention to the ethical and scientific dilemmas, long-term and short-term outcomes related to this discussion.