I gauged the impact that the CT scan results would have on my 16-year-old son, Adam. I delayed slicing into the volcanic pie of diagnosis, rarity of the disease, few treatment options, shortened life expectancy and the physical effects. I buried information in a place where only I watched it fester. Cliches told me I would know the right moment to tell him. Cliches (like their cousins, old wive’s tales) are correct as much as they are not. When could the right moment come to tell your son he has a brain tumor?
But it wasn’t my information to keep from him, even overnight. I knew it would change the way he lived, bringing a horror to his childhood that no kid should face — chronic illness and thoughts of mortality. Don’t get me wrong, I wanted to share the burden his pediatrician placed on me, but I was his mom, and I would not relieve myself at the cost of destroying his hopeful way of living.
I didn’t know where I’d find the words, but I was sure that anything I uttered after “you have a brain tumor” would just be white noise. As a mom, I rose in the morning and fell to sleep at night, spending every waking moment protecting my sons’ health, safety and happiness. My message, and these words would rob Adam of all three. The telling was on me.
When I dropped Adam and his brother at school in the morning, I was simply Mom, and while he went through the motions of grade 10, I met with his doctor, who had found a clinical explanation for his rapid growth, joint pain, spotty vision, profuse sweating and sleeplessness. By the time I picked him up, I had become an medical expert on his diagnosis, jumped into the uniform of medical advocate and assumed the role as the official disseminator of information. I became more than Mom because of a phone call, because of an office visit, because of tumor the size of a golf ball.
“I got the results of the CT scan today.”
He studied my face, and I watched as his eyes widened, big enough to show white all the way around the chocolate-drop iris. Then they glazed in wetness.
He exploded into fist-punching: first on his legs and then on the dashboard. He shook his head wildly from side to side like he was escaping from a swarm of angry bees. Then, staring hard at me, tears streaking his face, he shouted, “No, Mommy,” “No, Mommy” through his sobs. My teenaged son was reduced to the reaction of young child in that instant.
I cried too, more from the guilt of inflicting this on my boy, than from the knowledge of what we were likely facing. With his stricken face and wounded body language, what eye contact I could engage him in begged me, “Say it isn’t true.” He was pleading with me. I was doubled over, the stabbing pain in my belly, my hand resting on his knee
I couldn’t fix this for him, take away the sting or push it to the edge of his thoughts until later. I could do that with a lost hockey game, failed test or harsh words on the playground. That is regular Mom stuff.
Later, at his bedroom door, I fumbled out, “I’m sorry” and other placating phrases. He could not stir from stillness. He huddled, nestled in blankets and pillows, his lair for swallowing the bad news. It was strange for him to be so silent. He wasn’t a kid anymore.
We still see four sets of expert teams at three different big city hospitals with dreary regularity. The traveling, waiting and testing puts us side-by-side for an entire day, once a week, often more. Adam spends more time with his mother than he might by choice. I worry about what this is doing to his sense of independence.
As the presence of the inoperable pituitary tumor has made us accept that he will continue to grow (even at six-foot-ten), so it has forced Adam and I to change how we are together. I got “cooler,” learning to respond calmly to his off-color sarcasm. I “lighten up,” while taking on whatever role he needs me to. That means being his admin assistant, getting my hands squashed at painful tests and responding to agonizing questions like, “Do you know when I’m gonna die?” I am medical advisor, advocate, comforter and pal. I am whatever he needs.
Meanwhile, Adam does his best to be patient, tailoring his teasing to be publicly acceptable and making me laugh so the strain of absorbing medical texts, documenting his results and deciding on surgery, radiation and medication do not bring me to a teary meltdown. We are “companions in arms” and “sidekicks,” where we are now. Our relationship has morphed with each doctor, hospital, surgery, symptom and piece of bad news. We have developed our own plan and definition of forever.
It is not my choice that I speak on his behalf in the significant medical meetings with world gigantismexperts, the ones who will decide his future. I want him to run his own healthcare. For the most part he could now. Often I’m shushed politely and doctors redirect questions to Adam. He bristles, and replies, “I go through all this crap and she knows about all this crap. That’s how we do it! I have nothing to add to what my mom says. We are a team.” He needs it this way.