November 24, 2017: Spark of Light

On November 24, 2017, almost exactly one month after beginning outpatient physical therapy at Kessler, Matt had his last day of both cognitive and physical therapy at Kessler. We didn’t put a pause on therapy because Matt wasn’t making progress—although that factored into our decision. Instead, we decided to halt therapy until after the new year for two reasons. One, because Matt was scheduled to start whole brain radiation in the coming days and we wouldn’t have time for both—Matt might not have the energy for both. And, two, we didn’t know what to expect in terms of side effects from whole brain radiation.

The potential list of side effects was extensive and terrifying. I noted the most concerning side effect—temporary or permanent short term memory loss—but there was also a very real chance Matt would experience fatigue, nausea, and that dreaded swelling. Swelling, which could cause confusion, weakness, motor skill impairments—all the symptoms we were hoping would be relieved upon treatment, not exacerbated by treatment.

November 24th, the day after Thanksgiving, was not a school day. Which meant I had to drag G and H with me to Kessler. They sat beside me in the waiting room during Matt’s two hours of therapy. In return for their good behavior, after we bid goodbye to the therapists, we (our family of four) took a trip to the Turtleback Zoo, which was just around the corner from Kessler.

I don’t remember a heartbeat of this visit to the zoo. I took about two dozen pictures of G and H, but flipping through the saved photos on my phone does nothing to spark a memory. I tried to examine G’s and H’s expressions to see evidence of the cruel transition they were undergoing. G and H look happy in the photos. Simply happy. And to be happy, to feel loved and safe, is all we (Matt and I) could have wanted for them.

When I look at the photos, I see also how inseparable they’d become.

A side effect of the cruel transition they were undergoing was that while Matt wasn’t Matt, and while I was busy attending to a Matt who wasn’t Matt, G and H grew close. They argued frequently. They still argue frequently. But in the moments that matter, they became the other’s fiercest protector, biggest fan, and loudest supporter.

During our first Thanksgiving without Matt, when G was hit by a grief wave, it was H who came over to tell me that she needed me. Yesterday, when H was on the verge of a temper tantrum in public, it was G who found a way to sing silly songs to distract him.

Early on, I promised to find a way to soften the sharpest edges of this story. I promised to pick out the moments of light and love and share those alongside all the darkest times. In today’s post, I can deliver on that promise. Because today’s post is not about Matt’s final therapy session or a barely memorable trip to the zoo, which was probably marked by stress and frustration (for both Matt and me.) Today’s post is the story of a glowing spark of light that was somehow crafted out of moments saturated by heartache and fear.

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