(written in May, 2009 just days after my son survived two high-risk surgeries)
There are so many flashes of pride as a parent.
They are flashes, brief pulls of heartstrings, little twists in the gut.
I have been more blessed than some, I know.
I’ve had more time with my sons than others. I am still able to be a full time mother, to the extent that they need me. Little did I know that three months ago, a blur on a CT Scan would bring me from the relative freedom of pursuing my writing career and launching a business, back into full-time duty.
Now, I drive, I wait, I usher, I register for appointments, I answer questions, I do the research, I find the experts.
He, for the most part, just does from here to there, trudging through what I tell him is coming next. But being of strong convictions, and powerfully forthright in his opinions, he put his foot down a couple of weeks ago. He said no to a procedure that his parents, and his large surgical and endocrine team knew was for the best, his best chance at quality of life. He said he’d had enough. He was willing to accept the outcome without a second surgery, he really didn’t care what we thought, he wanted to be done.
Knowing what you do of my philosophy of parenting my boys, which I’ve written about more than is likely interesting (apologies, bored readers), you will understand that force is not my method of motivating my kids–Not force, not anger, not even tact. I have always given time for the boys to contemplate what choice made the most sense, and I have openly worked my butt off to describe my logic. The outcome of decisions affecting them has almost entirely been more a result of their input than mine.
My part has been just the facts…what I know from my short life and my limited experience.
So, the world-famous surgeon and his team suggest that a second surgery is necessary and the same renowned surgeon, peering down at my barely lucid, swollen-faced, terrified boy, says “if you were my son, I would tell you to have the surgery.”
Looking into all of our faces, each slowly in turn, the doctor then reached down and gripped my 16-year-old son’s huge hand in his two talented ones and suggested that we take some time to think about it.
No pressure, no insistence, no forms shoved into our hands because the surgeon judged the outcome to be a forgone conclusion, and was prepared to tell this sixteen year old to just do what he was told, but he didn’t. And for that he went from talented to exemplary in this mom’s books.
I wanted my son to have the illusive sense of control that evades so many patients, especially rare disease kids. But I also wanted him to seize the opportunity for a second surgical intervention before he left the hospital to recover. I didn’t want him to wait six months for the inevitable second surgery. This made sense to me in every way. But it was a torturous horror to even suggest it to him. Talking Adam into it, like so many other things, was my job.
He raged, seethed with disgust that we would all make him do this no matter what he wanted. There were painful words yelled at me that had me running from his room bleary-eyed and sobbing, into the city streets. But alone with my own thoughts or in discussion with his father, I came to the same conclusion that I was going to have to be the adult in this, the parent, the mature and clear thinking guardian of this angel on earth. I needed to tell him that we knew best, and he must have the surgery, with or without evidence that moved him, he needed to do this.
Somehow twenty-four hours later, while I was still dabbing my sore eyes and licking my proverbial wounds, he was taken from me a second time into the operating room for brain surgery. He went without anxiety, and without fear. Our relationship was tarnished by words he only uttered that once in terror and never before or since, and I was left alone with the knowledge that if he did not survive–it was on me.
Three weeks later, (the day of writing) he is bright, chatty and funny again, reflecting back on the surgeries, hospitals, doctors and caregivers to his favourite pediatrician. He told her that his relationship with me didn’t fare too well on the day that the decision about the second surgery was made, and then turning his chocolate drop eyes on me asked,
“But we’re okay now, aren’t we Mom?”
I could only nod. He not only made the decision, he took the time to heal my wound. I would have been joyous if he only realized how it killed me to push him so hard.
We’re okay now, my boy.
Getting to okay is enough for a #raremom.