03. MUSIC INSPIRATION
“Years from now, they will make water from the reservoirs of our idiot tempers.”
In "Soon Enough" by Constantines, the expectant father paces from room to room, praying for a daughter, because women are winning the tournament of hearts. He is gifted with a son, and he jumps ahead many years to think about this child as a man.
I imagined fatherhood through this song, a highpoint on a beautiful record about the lives most of us lead, quietly remarkable feats like working all the time and loving our families. I never imagined specific characteristics about my hypothetical son, except that maybe he’d look like me or that we might run through the backyard making movies on a Saturday afternoon. Not even what his likes and dislikes might be.
The cells my wife and I shared would make him, and that those cells would make him perfect.
But what do you do when cells don’t act right, when they don’t cooperate?
News of my wife’s pregnancy came at the end of a year-long struggle of tests, treatments, and monthly disappointments, the day after we had our initial consult for IVF. In our thirties, we felt the clock ticking, despite the headlines on Us magazine and others assuring us that we had at least 20 more years of prime baby-making ahead of us.
My wife sent me a text of a pregnancy test. “Pregnant,” it read. I immediately packed up my things and headed home to celebrate. From visions glimpsed during prayers, we were certain we were going to have a little girl. It’s what we knew. Our hearts told us. We thought God told us.
Expectant parents only want to hear one thing: Your baby is healthy. Nothing to worry about. Your cells and his cells got along fine and now you’ve made this little being who will change at least two lives forever, likely more.
On the morning of my wife’s first ultrasound, we were surprised to learn four things.
1. The little girl we had seen in our dreams was going to be a little boy.
2. Our little boy would have Down syndrome, which we knew next to nothing about.
3. A condition called a hygroma was threatening his precious little life. The next few weeks would be critical, but there wasn’t much that could be done to increase the odds of his survival.
4. The hospital staff expected that we would decide to end the pregnancy.
Our cells made something unexpected. Something scary and anxiety-inducing. We were angry and terrified rather than elated and excited. This after all those tests, all those medications, all those tears.
Other couples spent their days painting nurseries and collecting gifts. My wife spent a month counting kicks in her stomach while we tried to come up with a name for our little boy. We wondered if we should carry on with the baby shower plans, if we should pick out a name. We also began our research on Down syndrome. We had nearly all the joy of expecting a child sucked from our lives. The life the song made me imagine seemed to be gone.
Thankfully, the hygroma shrunk by the end of the summer, and we were able to look forward to the birth of Noah again. We made it through the worst part. We would be able to call his name and hold him. And that was enough at that point. We had his whole life to learn about Down syndrome.
On October 24, 2013, Noah Grey entered the world smiling. He has many of the expected struggles for an individual with Down syndrome, but he also has remarkable health and an indomitable spirit.
He brings joy every day. He loves dinosaurs, music (anything from “Uptown Funk” to Chance the Rapper), and Up. He drives his little sister crazy. He has impeccable manners. He gives the most amazing hugs. He’s learning to swim and playing t-ball.
Soon enough, work and love will make a man out of him. I’ll get to have those conversations. I’ll get to be there for his firsts. The cells that initially made our world come crashing down found another way forward. And it’s a beautiful path.