Our Story – Part 2: The Decision

Proceed carefully. Here be dragons. 

I’ve had to make a handful of “adult” decisions in my brief 45.9 years on this planet. Most of them usually involved justifying spending a large sum of money; a new car, moving to the other side of the country, a new camera, that conference I was certain was going to launch my screenwriting career. 

So when we were tasked with deciding what we wanted to do about the gestating fetus with the extra 21st chromosome growing in my wife’s belly, my first thoughts were about the cost. I realize that might sound cold, but I felt like I was dealing with the very future of our tiny, fledgling family, and I needed to protect what we’d already built.

Karyn and I are both “theater folk”, so we have always chosen Art over Commerce, (much to our parent’s and future selves’ chagrin) and our bank accounts have always reflected that. But we got by. We were always comfortable. But we’ve also never been more than one catastrophe away from total disaster. And this decision, to me, felt like we were inviting that catastrophe to go ahead and obliterate us. 

These fears were fueled, in part, by things I’d read online. (Mistake #1.) Down syndrome can come with a laundry list of other complications. Everything from cancers and heart issues that require surgery within the first year of the child’s life, to near constant care that would still be necessary long after Karyn and I shuffled off this mortal coil. I mean, the majority of people with Down syndrome will suffer from Alzheimer’s as they reach their 50s and 60s. I had no plan for my own late life care, let alone thought about needing to have one for my child.

Dragons.

To make matters worse, our Genetic Counselor suggested we meet with a Pediatrician who specializes in children with chromosomal disorders, to get a better understanding of what we’d be dealing with. Since neither of us had any first hand experience with Down syndrome we thought this sounded like a smart idea.  

This was probably the second biggest mistake we made during the pregnancy.

Dr. T. was in his 50s and had that air of authority and confidence all doctors carry. We met in a small exam room where Karyn sat on the examination table, I sat in a chair against the wall, and Dr. T. sat on a stool looking down on us with his arms folded and his face frozen in that “You poor bastards don’t have a clue” look.

He exuded about as much warmth as a bag of frozen peas. He spoke in a very cold, clinical, matter of fact manner. Blunt and to the point. He was an expert after all. 

“Don’t expect too much.” 

“You’ll be lucky if she ever walks or talks.” 

“She’ll probably be in diapers until she’s 7 or 8.” 

“She’ll probably never read or write.”

“Enjoy the time you have together now.” (As if we’d been handed a death sentence.)

Dragons. Fire-breathing dragons.

The Fucker even invoked the actor Chris Burke, who played “Corky” on the NBC show “Life Goes On” back in the late 80s/early 90s. (A show about a teenager with Down syndrome joining a public high school after years in special education classes.) He said Chris was an outlier, the exception and not the rule. Our daughter wouldn’t be anything like that.

Karyn cried. I swallowed my emotions, and felt like the whole world was crushing down on me. (We were charged $500 for that “consult” too!) We weren’t equipped to handle this. We had no support. Our entire extended family was on the other side of the continent. I don’t think I have ever felt greater sense of stress and anxiety than during those first early months of the pregnancy.

One day we met with a Social Worker at the hospital to see if she knew of any groups we could join with other parents who were experiencing something similar. She didn’t know of any, but at one point suggested we could terminate the pregnancy and just tell everyone we had a miscarriage. It seemed like everyone we met with at the hospital knew what we should be doing, so why weren’t we just doing it? 

I am no dragon slayer. I was scared this baby might very well ruin our lives, tear our family apart, and make me resent her forever. But at the same time, we both knew that if we chose termination we probably wouldn’t have any more kids. No siblings for Dashiell. No daughter to round out our perfect, little family unit. Would one regret outweigh the other?

Karyn and I talked a lot. We cried a lot. Sat in silence, lost in our own thoughts a lot. I got up every day and went to work, acting like nothing was wrong. Karyn got up every day and took care of Dashiell, acting like nothing was wrong. I’d like to say there was a lightening bolt, “Aha!” moment, but it was more like a slow awakening. We stared into the darkness of our greatest fears and realized that most of them were stories in our heads. We didn’t know anything. (And we still hadn’t met anyone who had a child with Ds.)

After we’d done more tests to double and triple checked the diagnosis, we approached the 23rd week cutoff for termination and just let it roll on by. We were going to keep this baby.

But making that decision didn’t magically cause all of the dragons to slink back into their caves. Oh no.

After an ultrasound about week 30, the doctor informed us that it appeared our daughter was going to be born without part of her esophagus. We’d need to meet with a surgeon, and be prepared for her to be whisked away and operated on the moment she was born. 

Fucking dragons.

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Coming Up: Part 3: The Accidental Home Birth