Tuesday, March 20, 2018

A response to Ruth Marcus and others like her for World Down syndrome Day 2018

I am writing this to Ruth Marcus of the Washington Post in response to her article "I would have aborted a fetus with Down syndrome. Women need that right." from March 9th, 2018, but it could easily be directed to so many across the world who share her same opinions regarding people with Down syndrome.


I have written and rewritten this post in my head a hundred times over the last week or so. I could go on and on about prenatal testing or abortion. I could argue so many points in the article, and unfortunately there are a few that I cant argue with. But none of those things would accomplish my goal in writing this. I guess the best thing I can say is

Ruth, you just don't get it.

Bless your heart. 

In a feeble attempt to change that fact, allow me to tell you a little bit about my son Zee.

I was not given the option to abort Zee, because I am not his birth mother. When I met Zee, he was 7 months old in a Intensive Care Unit at a local hospital. A ventilator was helping him breathe. He had a tube in his airway to keep it from collapsing.  He was connected to multiple other machines to give him oxygen and monitor his heart. He was being fed through a tube in his stomach and given countless medicines to keep him alive.

I was a brand new foster parent and I knew not one thing about his care. I was a single mom and I already had two biological children as well as a 1 year old son I adopted at birth who also happens to be blessed with an extra chromosome. I had every single reason in the world to say no. 

But I knew something deep down in my soul that day. I knew without a doubt that if I said no, he would surely die.

You see, I was the last ditch effort for him. Without my yes, he may have never gotten well enough to leave the hospital, and if he had he would have been sent to a nursing home. I knew he was my son when I first laid eyes on him and I have never regretted going to that hospital and giving this sweet boy a chance.

And to quote your article, he was "not the child I wanted".

I never once dreamed of bringing home a child who was ventilator dependent. I never hoped that our living room would be turned into a virtual ICU for months on end. I never "wanted" to have to go through 6 weeks of training with my mom to learn how to care for a medically fragile child.

He was not the child I wanted.....until I met him.

And then he changed my world for the better.

You see Ruth, a perfect child with no scars and no prenatal diagnosis could have never taught me about a love like this.

Every time I feel his heart beat I am thankful, because I was there both times that it stopped and he had to have CPR to be brought back.

Every sound he manages over his trach fills my heart up because for so long he could make no sound at all.

Every time he scoots across my floor I smile with pride because I know that for almost 2 years he couldn't sit up much less crawl.

Every time he wraps his tiny arms around my neck and hugs me I remember the time, not so long ago, when he didn't even know how to be held because it had never happened to him before. It was like holding a rolled up rug instead of a child. He just didn't know what to do with love.

Every time he plays with a toy or laughs at a song I think of the time when he was in the hospital and all he could do to entertain himself was stare at the back of his own hand.

Yes, "Down syndrome is life altering for the entire family"....just as you said.

You just don't understand. It is life altering in a good way.
Those of us who love a person with special needs don't think about their IQ's or their future financial security. We are just so very thankful for the beautiful lessons that they teach us every day. We are thankful that they are different because that is what makes them special. They teach us things about ourselves that we could have never learned any other way. They cause us to be more kind and more compassionate. They give us new eyes so to speak to see the overlooked, the vulnerable, the alone and to reach out to them.

And if given the choice to live in your perfect cookie cutter world with the kids and the life you wanted and your "good company" of friends who agree with you, I would choose my hot mess of a life every single time. I don't want to live in your world where everyone has the same abilities and the same IQ and the same chance and financial stability and independent living because that is not a real world. You simply can't abort everyone who doesn't fit the mold that you created.

Loving those who are different than us makes us better people.

I just wish I knew how to make you see that.

1 comment:

  1. I wish she could understand, too! There is no cure for Ruth unfortunately. Beautifully written with a truly warm soul. Thanks for sharing!