Saturday, June 29, 2013

Slow Dancing

That's the groom. Woodsy. Not his real name, but that's how my husband introduced him, so that's who he is to me. That spectacular young lady he's dancing with is his sister, Meaghan. Watching them last weekend reminded me instantly of those first days.

It was spring, 2010, and I was ten weeks pregnant. Sean and I went in for our first prenatal visit where I gave several viles of my blood for the first half of the sequential screening--the blood test that looks for genetic and other disorders. It was Friday. On Monday, my OB called. Not the nurse, my actual OB--not a good sign. The test revealed a one in ten chance that the baby had Down syndrome. She tried to reassure me, pointing out the obvious fact that a 10% chance in favor means a 90% chance against. And to be fair, if a medical procedure had a 90% success rate you'd be nuts not to believe it would work for you. So after my initial shock and flood of tears, I was confused when Sean came home from work and suggested we visit Woodsy's mom. Huh? What for?

When we arrived, Eileen, gave me a loaded hug. The kind of hug that says, "I get it, and you're not alone." A hug that serves as a lifeline when it feels like drowning is the only option. And as all the walls were closing in on me, she introduced me to her daughter. 

Meaghan, about 26 at the time, was the first person with Down syndrome that I ever really talked to. I mean, said more than simply, "Hi. How are you?" She was witty, sassy and very aware of her syndrome, which surprised me at the time. I left her home that night, just as confused and scared as I arrived, but very conscious of the lifeline that Eileen had thrown to me.

The next day Sean and I visited the perinatologist who performed a CVS (chorionic villus sampling) to check for genetic disorders. That was Tuesday. On Friday our genetic consultant called me while I was driving. The preliminary results were positive for Down syndrome. "What's the chance that these results are false?" I asked. Less than one percent, she told me. In fact, it seems she had never heard of a CVS ever being wrong.

"Do you want to tell Sean or would you like me to call him?"

"Could you call him, please?" I couldn't bear to tell him, to say it out loud.

He was standing on the threshold of the front door when I got home a few minutes later. He didn't say anything, just smiled big and wrapped his arms around me. I cried. I cried for a long time. And what followed were minutes, days, weeks, months of intense emotional turmoil and discovery, but I'll save that for another post.

Eileen was my beacon. I visited her a few more times before and after Max was born. Where some people try to paint everything rosy, Eileen was honest. She talked about what was great, and she talked about what wasn't. She gave me endless resources. She even compiled a bunch of photos of her daughter at different ages, just so I could get used to looking at the physical markers.

Eileen has since passed away, and though I didn't know her for very long, I miss her. She offered me something I haven't found anywhere else. Experience. And she told me to write. Write everything down. The good, the bad. All of it. She felt it was the best way to process the emotions and experiences. I think she was right.

Thank you, Eileen.

And since this post began at Woody's wedding, what better place to end.

Baby Chance's fans:




Uncle Richie

Little miss thang!!

Michelle...diva and doing it right.
 And lastly, a funny face...
Be careful! They might stick that way!


  1. Wow, quite an emotional post. Thank you for writing it and sharing these thoughts.

  2. What beautiful words. It seems like a lifetime ago that you were pregnant with Max. We are so so blessed to have him in our families, and we wouldn't change a thing about him. He's such a blessing.