August 11, 2017: Cruel Transition

One year ago today, H woke up in the middle of the night coughing and gasping for air. His vocal chords had swollen to the point where taking a breath was a herculean effort. Not a reason to panic in this house. He is prone to croup, and I have too much experience being woken up in the middle of the night by that telltale bark-like cough. I gave him medicine and sat with him until his breathing returned to normal. Like any anxious mother, after he fell asleep, I stayed up the rest of the night. Listening to him breathing. Listening to Matt breathing. Worrying. About all of it.

In the morning, I let G skip camp with H, who was feeling better. (His croup attacks tend to come on fast and disappear just as fast.) The kids and I spent the day together. My text message to a friend reminds me that the three of us had a really nice, calm day.

Matt and I texted only once, at 6:38, when he told me he was getting in the car to go home. He’d had a rough day, plagued by a handful of intense headaches that lasted no more than a minute each. And, after a long day—a long week, really—he was exhausted by the time he arrived home. Because, despite the headaches and exhaustion and potential dip in blood counts, he hadn’t slowed down for even a moment at work.

I didn’t blame him. I think he gave everything he had to his job not out of a sense of obligation, but out of the realization that the family business was on the verge of becoming everything he’d dreamed it could be. I think he gave so much at work, that he had nothing left when he got home. And I think he knew that was okay, because we (G, H, and me) would be there waiting when things slowed down.

When he came home, Matt went upstairs to lie down. I ordered in sushi (our usual Friday night order) and worked on art projects with the kids. I can picture G, H, and me sitting around the kitchen table, markers and stickers and tubes of paint scattered across newspapers haphazardly put down…and Matt upstairs, in bed, in a dark room. It’s a scene that replayed too many times.

I’ve written so often how the dynamic in our marriage was slowly changing, how our old relationship was slipping away in imperceptible micro-movements and I didn’t realize how much had changed until suddenly I looked up and couldn’t recognize us anymore. The tragic truth is that our marriage wasn’t the only relationship subject to that cruel transition.

Matt’s relationship with G and H, and their relationship with him, suffered the same brutal transformation.

It started with days like August 11, 2017. When Matt was too tired to play, when he needed to go upstairs and nap and couldn’t find the energy to do the extra art project, though I know he wanted to. Then extra naps turned into hospitalizations, which turned into stays at rehab, which turned into someone nearly unrecognizable. Slowly, so slowly, our family of four began getting used to missing our fourth.

That transition, the way the relationship between Matt and the kids suffered in the final months and weeks, is why, in my opinion, brain cancer ranks at the top of the worst cancers. The way the tumor attempted to sever the bond between parent and child leaves me speechless.

The key word is attempted.

I’ve written how difficult this six month mark is for me. I have not mentioned how brutal it is for G and H, who have gone to camp smiling about color war only to come home in tears because the boy who was dropped off at the house before theirs was surprised by his dad at the bus stop. I wish, every day, that I knew the thing to say that would make them feel better, that I could do something more than sit next to them under a throw blanket on the couch and listen and swap memories.

Through the grief–mine and theirs–and the wishing for a different ending to our story, here is what I’m grateful for in those moments of heartbreak: we can swap memories. And we can smile and laugh while we swap memories. The way G’s and H’s relationship transformed is not the way they define their relationship. And not because G and H don’t remember—they will always remember the cheddar bunny incident; they will never forget the sharp words aimed in their direction—but because their bond was stronger than the worst of Glioblastoma. The bond between G and H and their father is not, and will never, be severed.

GBM took so, so much from us. But in this, GBM lost.

14 thoughts on “August 11, 2017: Cruel Transition

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