Steve Edwards argues that the day he became an advocate for his son’s undiagnosed medical problems was the day he truly became a father
The day I became a father wasn’t the day my son was born, and neither was it one of the hundreds of sleepless nights I spent holding him, whispering to him, singing, begging him to please stop crying. It was the day I realized that I could no longer live in denial—there was something medically wrong with him.
It was the day I found my voice.
To understand the significance of all this, I have to first back up and acknowledge that my wife knew something was wrong far sooner than I did. On multiple occasions she had tried to convince me, but I was too scared and uncertain to listen. If something was wrong, I thought, why hadn’t the doctors we saw fairly regularly for immunizations and well-baby checkups expressed concern?
I thought it was us—that we were too sensitive somehow. I thought it was me, my inexperience with kids. I hadn’t grown up around babies. In fact, I had held a baby just once in my life before my son was placed in my arms the night of his birth. And the books I read about being a dad? Useless. They were full of anecdotes about changing diapers and getting vomited on. The dads all seemed like affable sitcom characters whose harmless fears vanished the instant they gazed into their babies’ big blue eyes. None of the books about being a dad said, “This experience can fuck you up.”
In my denial, I imagined my son’s health and wellness as a kind of algorithm my wife and I just hadn’t mastered. Maybe if we changed to a gluten-free diet, adjusted the temperature in his bedroom, let him sleep with us, let him watch more TV or listen to more music, or changed his laundry detergent and got him more comfortable clothes, or just kept our heads down and endured his crying and sleeplessness—maybe, if we did those things, his problems would go away on their own. And if his problems went away, maybe my own fear and anger and grief would, too. Maybe I would stop hating myself for having willingly given up a pre-baby life I loved (with its freedom to do whatever I wanted whenever I wanted) for the 24/7 agony of a screaming child. There were nights the crying got so bad, I hoped my son would stop breathing altogether. There were worse nights than that. And the guilt I felt—for those thoughts, and for my inability to help my son—further fueled my suffering. I felt as though I deserved to hurt.
Then one day, in our son’s second year, my wife convinced me that we should take him to the clinic and demand referrals for a battery of tests. She had done her homework and knew what needed to be done.
“Should I come?” I said.
This question stemmed from a larger conversation we had been having. My mother, who for years worked as a doctor’s assistant for an ENT, said part of the reason our concerns for our son weren’t taken seriously was because I had been accompanying my wife to the appointments. She said the doctors probably thought: What’s Dad doing here? Mom must not be able to handle it on her own.
“It’s up to you,” my wife said. She no longer cared what anyone thought—she was going to demand the referrals.
“I’ll come,” I said.
Our appointment was at 4:45 on a Friday afternoon and the clinic waiting room was packed to the gills with sick kids and parents—a depressing place to be at the end of a long day. When our name was finally called, we followed a nurse down a hallway and went through the requisite struggles of getting our cranky, squirmy, by turns hyperactive and lethargic two year old weighed and measured.
Then we were led to an examining room. While we waited on the nurse practitioner, our son paged through every picture book in a small basket in the corner. Then he started getting into things. The cabinets, the sink, the buttons and electric plugs under the examining table. I followed him from object to object, carefully redirecting him and eyeing the clock. If he didn’t get dinner soon, like by 5:15, we could have a serious meltdown on our hands. I lived in dread of his meltdowns.
Fortunately for us, despite all the pain and struggle of our son’s then undiagnosed gastrointestinal issue, he loved meeting new people and perked right up when the nurse practitioner came in and introduced herself. She was young and blonde—serious looking but friendly—her hair pulled back in a tight ponytail. As she listened to our son’s heart and looked into his ears, my wife went over his entire medical history, mentioning that he still didn’t sleep the night, that his belly was distended, that his bowel movements were few and far between, and that he had started crawling into our bed at one, two, three in the morning to scratch and claw at our faces. The nurse practitioner nodded and made notes. Through with the exam, our son was released to the floor and continued getting into things—and I continued chasing him around and redirecting him.
It was hard for me to hear what was being said between my wife and the nurse practitioner, but my ears perked up when I heard the nurse practitioner say, “I obviously can’t diagnose him with this, but from just watching him these last five minutes, I can tell you: that’s autism. There’s not much we can do.”
“It’s five o’clock,” I said.
The nurse practitioner glanced at me.
“He’s acting like this because he’s hungry,” I said. And my wife said, “We still want to have those tests run.”
The nurse practitioner crossed her arms over her clipboard and held the clipboard to her chest and let out a sigh, gave us a pitying look. “You can spend your whole life doing tests,” she said. “It’s no way to live.”
And I don’t know where it came from—the deep wellspring of my anger, or all the love I felt for our little boy who was sick, or some third place comprised of both of those things and more—but I said, “No,” and I looked the nurse practitioner square in the eye. “How we’re living right now is no way to live.”
Two years of suffering, silence, confusion, doubt, guilt, denial and rage all laid bare and exposed by what was probably, in hindsight, the truest sentence I have ever uttered. Not that it made much of an impression on the nurse practitioner. In the end, she refused to order the tests. But what did it matter? There were plenty of other doctors in the world and we’d keep looking until we found the right one. No, what mattered in that moment—for me, and maybe my wife and son—was that I found my voice.
You can read more about Steve Edwards’ struggles with raising a sick child in “Not Failure But Courage: Parenting a Special Child.”
Credit: Photo—Brett Neilson/Flickr