“Mrs. Krug, as I’m sure you know, your son has had a traumatic injury to his brain. This can affect him in many ways…”
The genetics fellow at this teaching hospital is speaking slowly, and when I can no longer listen to his patronizing tone I cut him off.
“Listen, I appreciate that you’re trying to help, but what I’m trying to discern is whether you know of any genetic anomalies that would have led to the bilateral congenital absence of my son’s arcuate fasciculus.”
He looked at me slack-jawed. “Oh, I didn’t realize you were in the medical profession.”
“I’m not.” I responded. “But I’m an expert on my son.”
I never had any desire to be a doctor — I was a middle-school English teacher and loved my career. And yet there I was, the CMO (Chief Medical Officer) of my family. The title was born out of gallows humor when my son had a stroke in utero and all the plans we’d made went out the window. My husband is the CFO of his company, and I felt that I deserved an equally illustrious title considering my own high-pressure, high-stakes job at home.
All of Owen’s dozen or so specialists had their own opinions about what was best for him, and few were communicating with each other or considering the whole picture. That was up to me. And if I was going to do it well, I had some studying to do. I read medical journals late into the night. I researched neurological terms like precentral gyrus, hemiparesis, and ischemia. I became educated on innovative types of therapy and diagnostic tools. I Googled my little heart out.
There were days when I sat weeping in front of the computer, overwhelmed to the point that I went to the dark side, scrolling through pictures of worst-case scenarios. But those moments of weakness did not allow doctors to talk over me or down to me. I was going to ensure that they had to talk to me — that they respected me. I needed equal footing. It was the only way I knew how to actually hold some power to help Owen.
When people hear about my son’s condition, there is always a combination of I-don’t-know-how-you-do-it, and thank-God-I’m-not-you, and the pitying head tilt. (That damn head tilt kills me.)
These head-tilters are friends, neighbors, family — well-meaning, good people. The majority of them knew me beforehand and are mortified by the catastrophe they have been witness to, to the previously idyllic life they have watched go up in flames — a life that looked eerily similar to their own. I am a cautionary tale.
When I assure them that they would do the same were they in my position, I mean it. What seems impossible to imagine to them once seemed unimaginable to me. But I was dealt this hand. I am not doing anything that any mother I know wouldn’t also do.
“Chief Medical Officer” is not what I wanted to be when I grew up. I had to make the choice between gambling with my son’s future or my own. Looking back, I wouldn’t even call it a choice. I saw my boy lying there with tubes emerging from his nose, his mouth, his navel, and I knew that this was his life, his future — that there were things I could give him that a stand-in could not.
I may have opted out of the life I had planned as a teacher of many children, but it was to benefit the one child who needed me most.
Jamie Krug is a writer, wife, and stay-at-home-mom with a full-time job as the CMO (Chief Medical Officer) of her family. You can find her writing on Huffington Post, BabyCenter, Scary Mommy, and her blog, JamieKrugAuthor.com, where she tells the story of her family’s struggles and triumphs in the wake of her son’s rare diagnosis. You can follow Jamie on Twitter, Instagram, and Facebook.