This article by Andrew Solomon appeared last week in the New Yorker: In this article Andrew talks about the recent North Dakota abortion bill and its limitations on “selective abortion.” Pointing out that parents are asked to make these decisions without complete information.
MEDICAL PROGRESS, SOCIAL PROGRESS, AND LEGAL REGRESSION
I do not believe that is it within my rights to tell someone else what to do. I believe in freedom as long as our freedom doesn’t impede someone else’s freedom. But what about the freedom of the child? How informed are these decisions when they involve a “life limiting” diagnosis? The challenge is that parents are asked to make these decisions without a clear understanding of the road ahead. All they are counseled about are the negative, fearful parts of having a medically fragile or disabled child. The medical profession never discusses the blessings and the joy these children bring with them.
With the increased use and so called advances in prenatal testing I believe these discussions are only just beginning where it applies to abortion or “interruption of pregnancy” due to fetal anomalies. As long as people are okay with terminating babies with no known issues, the “perfect ones” if you will, then the unique and different don’t stand a chance. I applaud North Dakota for standing up and saying, “stop and look at what you are doing.” , These children are NOT weeds to be eliminated from the Garden of Life. They are unique and fragile flowers, each with their own beauty that they bring to the world. They created texture and contrast in the garden we call life.
As a parent of 13 year old daughter with Full Trisomy 18, a genetic disorder believed to be “incompatible with life” I will say, when we received our daughters diagnosis we were terrified. The medical professional gave us no hope and no chance. We wanted our lives back. We actually discussed ending our daughter’s life.
Its not something I ever thought I would consider, EVER, but the Fear was so great. We were afraid of losing our daughter. We were afraid of her living a life of pain. We were afraid of losing our Life as we knew it. We were afraid of what it would do to our other children. We were afraid of life with a child with special needs. We were afaid of every thing about this journey we found ourselves on. We were simply afraid of the pain.
Every reaction we had came from Fear. FEAR, faulty evidence appearing real. I say faulty evidence because that is what it is. Yes, our daughter had a genetic “dis”order, but that didn’t change the fact that she is our daughter. I believe we were entrusted with this incredible little soul because we would overcome that FEAR. She knew we would love and protect her. She knew we would help her to become all that she can be.
But more than that, she knew she could love and protect us. She knew that she was the key to our soul’s journey on this spinning planet. That the lessons she would bring would be great. The friends she would bring into our lives would be life-long and that the love we would discover would be so much bigger than any love we could have ever imagined, that our hearts would be simply overflowing.
Krissy has taught us so much but mostly she’s taught us about pure unconditional love. She has taught us to be grateful for each and every day because you never know how many you are going to get.
Kristina teaches us daily that:
“You’ve gotta dance like there’s nobody watching,
Love like you’ll never be hurt,
Sing like there’s nobody listening,
And live like it’s heaven on earth.”
William W. Purkey