Ryan Spaustat: Fatherhood, off-script
I should have celebrated my son’s birth — but I didn’t. The mood in the operating room was subdued and quiet. The doctors said his oxygen levels were low, and he was whisked away to the neo-natal intensive care unit.
I think most parents script their children’s lives in pencil — maybe not all the details, but the significant chapters; first smile, crawling, walking, talking, school, marriage, kids. Subsequently, each day our children erase our penciled script and write their own story in permanent ink.
Charlie’s first entry: Trisomy 21 — Down Syndrome. The doctors delivered the news in slow motion. Suddenly, with Charlie’s diagnosis, my entire script was erased in one swift motion, and I was left with a book of empty pages. Beyond worrying about his immediate medical concerns, I held him in the NICU and wondered if he would ever ride a bike, read a book, be able to add and subtract.
I hated it. I had no road map, no way to know what to expect. It took me a while to come to grips with this empty book, but I’ve come to realize that it’s a better way to be a parent, a better way to live life. Each morning, I awake wondering how Charlie is going to fill that day’s blank page.
Charlie’s story is full of doctors, therapists and hospital visits. His first Christmas Eve included a barium swallow study and visits with a gastroenterologist and urologist. The morning of his first birthday, we drove to Children’s Hospital for a nasal endoscopy exam. I forget how many trips we’ve made to various hospitals and doctors’ offices.
At the end of each exam, the doctor would summarize the visit with notes in his files. Sometimes to us, other times, speaking out loud to themselves, they’d mention Charlie’s happy disposition. I noticed the pattern but I didn’t bother to think much about it. One morning, after spending the night at the hospital for a sleep study, a nurse called asking us to come back to the hospital to see the doctor — he wanted to discuss the results. We knew it wasn’t going to be good news. We met with the pulmonologist for the first time, and he immediately asked, “Is he always this happy?” He was surprised Charlie was in a good mood — he’d just spent the night hooked up to sensors and monitors and a nasal cannula.
Then it hit me — kids who spend as much time with doctors as Charlie aren’t happy for good reason. They’re mad, cranky, tired and in pain. Children’s Hospital is simultaneously one of the most amazing and saddest places in the world. To them, Charlie’s smiles and giggles were a noteworthy surprise.
Life has given Charlie so many reasons to be unhappy, but he’s not. Sometimes, he’s mad, cranky and in pain, but overall, he has an innate awareness of the gift of life, of joy as the very condition of his existence. Even in the midst of setbacks, the arc of his life bends towards joy.
Of all the gifts Charlie has given me, this realization is my favorite — joy as the very condition of existence. I look back on his birth, and I should have celebrated the gift of his life and the joy it would bring me. I didn’t know that then, but I do now.
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