Wednesday, November 27, 2013

Am I Thankful for Down Syndrome?

Am I thankful for Down syndrome? Every single day. Joey came into our world with a bang that has not stopped. And at the end of the day we are still in a state of amazement that he ever made it at all. Was I always thankful for Down syndrome. No. Not at all.

Photo by Nat.

Initially, we found out around 12 weeks into our pregnancy that Joey had fetal hydrops- fluid surrounding his body as well as a septated cystic hygroma that looked like a halo around his head that was also fluid.

We were told that probably due to a heart defect and a chromosomal variation (we no longer refer to Joe as a chromosomal abnormality) the fluid would continue to surround his body and brain and that in all likelihood, Joey would not survive the pregnancy. We were told not to expect the pregnancy to last past 20-24 weeks. 

We were told he had about a 1.9 or 2% chance of making it.

When we were told that news, Down syndrome was the last thing on our minds. The next week I underwent a chorionic villus sampling (CVS) testing to try to learn more about what might be causing Joey's complications. A few days after that testing, we were told over the phone by a geneticist in another town that our baby had Down syndrome.

Again, Down syndrome was not really on our minds. Instead, we were dealing with the idea that our baby boy would not survive. We were coping with these foreign and frightening medical terms like "septated cystic hygroma" and "fetal hydrops" and "congenital heart defect".

It wasn't your "typical" pregnancy. And by typical, I mean that most women who are pregnant don't see a psychologist on a weekly basis in addition to visiting the high risk fetal medicine OBGYN two to three times a week. That's not what I saw when I viewed my other friends' pregnancies. At times I was angry. Other times I was depressed. Sometimes I was envious. I would see other pregnant women and wonder why we had to be living through this hell in which our little baby was given virtually zero chance of surviving. 

I think that sometimes it takes going all the way to those very dark, dark places to realize what gratitude means. To understand how fortunate and blessed your life is. It is easy to get caught up in a day to day existence of going through the motions. But sometimes in our lives we have a journey that is so shocking or so stressful or so difficult that it sharpens our very views of the world. It's like when you are at the eye doctor and he keeps flipping the lenses asking which one you see more clearly through. Joey brought the most clarity I have ever known in my life. For that my gratitude is unending and eternal.

Photo by Nat.

Once we had made it past week 20, then week 24 and finally week 28-- that was when I really started having more faith that this little fighter might actually survive.

Around week 24 his congenital heart defect was confirmed and we were told that he would more than likely need open heart surgery.

It was after this point that I started to cope with Joey's diagnosis of Down syndrome. Cope, you ask? Yes, cope. 

The point of this blog is to raise awareness, to be a resource for other parents and to try and take away the fear that new parents might have when they find out their child has Down syndrome, but long before I could try to do my own advocating, I had to face my own fears and I had to learn to cope and ultimately accept Joey's diagnosis. 

My version of coping meant meeting with a therapist and discussing all the possibilities of this pregnancy and what it would mean to raise a child who would have special needs. My version of coping meant reading every single book and blog on Down syndrome that I could find. My version of coping meant grieving hard and deep for the better part of the pregnancy. My version of coping meant meeting some other parents and learning about their journeys. 

Photo by Nat.
Looking back, much of my journey coping and grieving about having a child who had Down syndrome seems so very selfish. Much of it seems like a waste of time, but it was a journey, a process, and it was my process. The part that feels so selfish is that so much of my worry centered around me- how would I take care of a child with special needs? How would I find the patience to handle a child who might move at a more leisurely pace? How would I feel about how society treats my child? How would I feel if someone made fun of my child? How would I feel if my child didn't fit in at school? How would I deal with all the unknowns? 

Many of my fears were fears for how Joey would survive in this cruel and sometimes dangerous world for people with disabilities, but so many were self-centered.

Joey riding Rufus at Victory Gallop.

Despite all of my preparation and despite all of my reading, I truly had no idea what Down syndrome was until I met our baby boy. I had no sense of just how "normal" Joey would be. I had no understanding of how much this little person would make us laugh. I had no idea how much he would bring our family together. I had no idea that we would all become his biggest cheerleaders. I had no idea that things like horseback riding would become one of the best parts of our week. I had no idea about the other families and children we would meet along the way. I had no idea about how much the world would open up and how much more empathy we would have towards all individuals with disabilities.

I had no idea how much clearer and sharper the important things in life would become. Or how much easier it would be to see and appreciate those things.

I had no idea that Down syndrome would end up not being something to mourn and lose faith and time over. I had no idea just how much Down syndrome would change all of our lives for the better.

For Down syndrome and for having a miraculous little boy named Joey, I am forever grateful.

Do you have something in your life that has helped you see the important things more clearly? Something to be eternally grateful for? I hope so. 

Photo by Nat.

Happy Thanksgiving 2013!


  1. The real spirit of love and Thanksgiving is perfectly shown in your family. Thank you.

  2. Your post is right on the mark for me too...I look back with shame and regret about how sad I was when I first learned Alex had Ds. Now I think - what in the world was I crying about? He means everything to me. He is so beautiful and perfect and wonderful just as he is. But you are exactly right - it is a journey/process and everyone needs to get there in their own way...Margaret:)


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