There have been a few days when I’ve leaned back against the wall and thought, “Oh…this is the hard part. This is what I was afraid of.”
When they rolled my son down that white hall into heart surgery, I nearly imploded from the sheer fear of losing him, of the possibility he may never make it out of that room. So many moments since the day of his birth, his smile brightened the world; I couldn’t imagine living a life without that smile.
That process, his heart surgery, was the hardest of my life. And, I’m going out on a limb here and assume his too. But he made it through to give us more smiles. In fact, there is rarely a day that goes by that we don’t laugh together, Marcus and I.
Every time since then that I have leaned on that wall and said, “This is what I dreaded,” it has not been because of something Marcus could or could not do. I have never felt that sore feeling of the wind being kicked from my sails because of something Marcus said or did to me. No, those moments have come from outside our safe zone.
Today it came from Richard Dawkins as he replied to a person saying on Twitter, “I honestly don’t know what I would do if I were pregnant with a kid with Down Syndrome.”
@InYourFaceNYer Abort it and try again. It would be immoral to bring it into the world if you have the choice.
— Richard Dawkins (@RichardDawkins) August 20, 2014
I feel the same way. Christina’s biggest hurdles were put in her path by so called professionals who told her what she was not capable of doing. Some of them, like Dawkins, did not even know her.
Battling the invincible ignorance of chromosomal racism is exhausting, but by the magnitude of the pushback Dawkins is receiving, (Oh, look, he nearly apologized!) I can tell you that we are not alone in this. Long before you and I came on the scene, the geneticist who discovered the 21st chromosome, Dr Jerome Lejeune was fighting this battle alone. He said,
“Again and again we see this absolute misconception of trying to defeat a disease by eliminating the patient! It’s ridiculous to stand beside a patient and solemnly say, “Who is this upstart who refuses to be cured? How dare he resist our art? Let’s get rid of him!” Medicine becomes mad science when it attacks the patient instead of fighting the disease. We must always be on the patient’s side, always.”
Yes! Thank you for commenting and sharing these insights. Gorgeous truths.
I did not know this quote od Dr. Lejeune – I will tuck this away for future use without a doubt. Thank you for sharing.