A Massive Trigger

and being forgiven

Photo by Steve DiMatteo on Unsplash

“I’m so sorry,” I said over and over while she held me, in the Saturday early evening rush at the brewery across the street from our bookstore. “I was so lost and angry and scared, and I took it out on you and I’m so sorry for that.” I had been waiting to say those words to her for eight years, and suddenly she was there in front of me, asking me “Don’t I know you?” The answer was most certainly yes. I was probably the most aggressive and angry mother to ever cross the threshold of Seattle Children’s Hospital and she had been our “person.” I couldn’t understand what I viewed as everyone else’s acquiescence to these tragedies which had struck us all down like lightning, a storm that had no end in sight, and was a very good reason to not believe in a kind and benevolent God. Her name was Cory and she was the only person I could talk to like a rational person there. But that was only sometimes. Usually I complained and bitched and made her job more difficult. I might honestly have ended up in jail had I not had her to run interference for me over and over again. Security was called to Ben’s room a couple of times, because he was sneaking vapes, and I challenged them, “What are you going to do? Throw us out?” I would defend Ben even against the most basic rules of a hospital, like don’t smoke in your room, as if my own life depended on it. I was unhinged, no doubt about it.

The routine was the same. Every Monday you get bloodwork. That bloodwork determines if a. you get to have chemo that week because your blood levels are good enough (which is going to be hell), or b. you need a transfusion and chemo has to be postposed (which is also hell). Either way it’s awful. The schedule also included biweekly MRI’s with contrast which lasted for hours, and the agonizing waiting for results. Not to mention that a fever of over 100.5 required a visit to the ER and probably admission to stave off potential infection. Ben stayed for a total of 78 nights in the hospital, 6 in the ICU, stretched out over eight months. I was there every day and every night. I abandoned our business, leaving it all for Chris to manage, and became a full time caretaker, advocate, and asshole.

Cory would call us after bloodwork, or we would see her in clinic after MRI’s. She talked to Ben like an adult when he asked her if she would help him die. She told him if it came to it, she would help him through the process. She tried to talk him into a feeding tube to no avail as his weight dropped down to eight-five pounds. His was a strange position, being eighteen in a Children’s Hospital, not quite a child, definitely not an adult. Cory didn’t sugarcoat, but always gave us reason to hope. And ultimately the results were positive. The tumor disappeared, along with Ben’s pituitary function (a byproduct of the surgery to biopsy the tumor). We were reminded the subsequent radiation would have knocked out his pituitary anyway, as if it was a consolation. His life would be completely different from what we had thought it would be. But he was here, he was Ben, and we got to keep him.

Cory’s title is Neuro-oncology Advanced Registered Nurse Practitioner. Bot she was everything to us. We very rarely saw the oncologists except for during rounds at the hospital, or for big events, like when Ben became psychotic during a particularly difficult round of in hospital chemo. She was doctor, nurse, friend, confidante, the bringer of horrible news, the bringer of reasons to have hope. As I yelled and demanded and threw fits because I felt Ben wasn’t getting what he needed, she remained calm—she never got mad back. There was certainly reason for frustration. At every turn when you are navigating this fucked up medical system we live in, there are dumb policies and inanities and horrible daily visions of not only your own child in pain, but the other children and their parents. There is a silent recognition, but very little bonding happens between them. There is too much pain for giving. Every person is on their last possible nerve all the time. Sleep deprived from worry and being on alert 24/7. Food deprived from worry and being on alert 24/7. Trying to get your own kid to eat but he can’t and the scale keeps going down and down.

Over these past eight years I got help. I was treated for PTSD as a result of what happened during Ben’s treatment. I went to talk therapy. I became softer, less aggressive and angry. Yet I felt intense shame over how I treated many of the kind doctors and nurses who were really trying to do their jobs, and I made their lives more difficult because of my own pain. This shame has haunted me and I didn’t know what to do with it. And then she was there sixtyish, red hair, green sweater, a big smile, and she accepted my apology and kept coming back with more hugs and reassurances as I sobbed in a way I never did when I was around her during Ben’s treatment. I never showed her my grief and sorrow until last night. I just displayed anger and protectiveness and lack of trust in the system.

I hesitated to post this photo because I look like hell, after crying for fifteen minutes. But it was real, and it was cathartic, and afterwards in the car on the way home, alone, I howled. It was a release of something that has remained inside of me for eight years. I’m not sure if it is really gone, if it ever will be. But my ability to finally look her in the eye and apologize for my terrible behavior, and for her to forgive me so openly and lovingly, not even acknowledging that I was wrong, but that this is what happens when your kid gets really sick. It helped me so much. If there is in fact a kind and benevolent God, I saw her last night. And her name is Cory.