“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.
This is the third installment in a series of blogs about my memoir, which is in progress. Read the other installments here (first) and here (second). If you’re intrigued by my story, please subscribe to my blog here so I can let you know when my memoir is finished. When that happens, I’d be honored if you would read it.