It’s amazing, when you get a diagnosis for which you were unprepared, how quickly your lexicon expands.
Pilocytic astrocytoma and hydrocephalus and third ventriculostomy were three of the mouthfuls added to our vocabulary when our son Matt was diagnosed with a brain tumor.
In the following years, neuropsychological testing and 504 Plan and TBI joined our dinnertime conversations.
It’s amazing, too, the capacity our brains have for growth. At the moment of crisis, it seems to shut down, and all we can remember are the awful words. Then our brain recovers, creates new neural pathways, and starts processing and filing information.
It’s a metaphor for life.
We’re not always prepared for what’s thrown our way, but we have the capacity to shut down when we need to, then recover and grow.
I almost missed it—National Brian Injury Awareness month, recognized in March.
Maybe it wasn’t on my radar because I don’t talk much about my son’s brain injury; I talk of the brain tumor that caused it. They are intertwined in my story, the tumor in and the injury to his brain.
Not much of my story falls neatly into predetermined categories. Our whole rumble with a brain tumor, diagnosed when Matthew was 11, was an anomaly; it was never black and white, always shades of grey, like brain matter. Before and after his diagnosis, Matthew’s condition was a square peg surrounded by round holes.
His symptoms were not consistent with a brain tumor. He had no headaches or seizures, for example.
He was so smart that even when his cognitive skills declined between third and sixth grade, he maintained Bs and Cs, contributing to the delay in his diagnosis.
His tumor was low-grade and benign, but destructive.
I don’t say my son had a brain tumor, I say my son has a brain tumor since it was and is still there, clinging to his brainstem, inoperable.
Yet I talk of surgery. The brain tumor itself didn’t cause the brain injury; it was hydrocephalus—fluid trapped in his brain by the location of the tumor—that caused the damage. The hydrocephalus was relieved through brain surgery, drip by drip over years and years
A brain tumor isn’t technically a TBI—Traumatic Brain Injury, usually caused by assault or accident. You’ve probably heard of TBIs in stories of football players and wounded warriors. A brain tumor is an Acquired Brain Injury—ACI. Ever hear of that? Neither had we, and it was hard finding the appropriate resources for recovery. We didn’t fit in anywhere.
And, the most important anomaly, the one that makes my story one of hope rather than one of despair:
Matthew’s recovery didn’t stop after five years, as we were told to expect. It didn’t stop after ten or even twenty years. It continues today, amazing him and us as he advances and thrives in life. It’s the only anomaly that really matters.
Sometimes being the square peg is a blessing; I wouldn’t miss that for the world.
Last year, I shared this story about when Matthew was carted away for surgery:
“I’ve been in those shoes – watching as your child is carted away to be cut into.”
I wrote that recently in response to a fellow writer’s blog post about her son’s surgery.
In my case, the carting and cutting happened when my son Matthew was 11. It was after three years of increasingly odd behaviors and unsettling personality changes that left him, well, not Matthew.
Three years of doubting my gut and listening to others who knew him less than me. Three years of fighting my instincts, my husband, and my family. Three years of wrong doctors and wrong diagnoses. Finally fighting them, too.
Then, in one moment, clear as black and white on a grainy MRI image – the right diagnosis. Validating and devastating.
The day they carted away my child to cut into his brain, the moment Matthew was out of sight, I fell apart. It wasn’t entirely the brain tumor or even the cutting that made me crumple. In fact, we were told he would “bounce back.” It wasn’t a “serious” tumor, we were told. Although the bean-sized growth was inoperable, clinging to Matthew’s brain stem, the havoc it had wreaked could be fixed. We were told.
I crumpled into a hot mess of tears because the three years finally caught up to me. I cried for all that Matthew had endured, all that I had endured, and because we did endure. I cried with relief that he would bounce back. I pictured Matthew running once again like a gazelle, as he did before, when he was still the old Matthew.
I cried so hard I couldn’t see. There was nowhere in the hospital to go for privacy. My husband Michael walked me around with my face in my hands, as I tried not to gasp and squeak like I do when I’m in ugly cry mode. We found an alcove under the stairs in the main lobby where I could try to cry myself out, but we couldn’t stay there long. We had to get back to the waiting room so they could find us when Matthew was done.
In the waiting room, adorned with colorful paintings and cushy chairs, my blubbering stopped, but not the tears running down my face. Looking around, I saw that no one cried but me. How do they do it, I wondered? Someone here’s gotta be facing a more serious operation then Matthew’s. How can they not be crying? Parents sat around playing cards, most of them in pairs or small groups – probably grandparents there for moral support. Some folks even laughed. But only I cried. In fact, in the entire Boston Children’s Hospital chapter of our lives, I never saw anyone cry there. I still don’t understand.
To Michael’s relief, I finally stopped my deluge of tears. We were able to pretend to read and do a crossword puzzle. Hours later, a nurse came out to tell us that Matthew’s surgery was successful, and shortly after, we were by his side. My precious child, so fragile, so brave, the four inch bandage on his shaved head the only evidence that he had been carted away and cut into.
That day was November 3, 1997. That day, hope broke through the persistent cloud cover, attempting to dissipate it tear-droplet by tear-droplet. But it would be another year before we realized the true import of the day. As it turned out, that day was just the eye of the storm.
March is National Brain Injury Awareness month. For information, go to www.biausa.org.