Isaac, our oldest, played in the sixth grade orchestra last night as part of the middle school’s overall orchestra Spring concert. Our whole family attended, even if the younger brothers and a couple grandparents made a discreet exit after the sixth grade performance but before the seventh and eighth.

I was happy to attend.

Sincerely, really, really happy to attend, and I was especially happy to see how proud Isaac was to see his family in the front row (bleacher).

But you should know, these are difficult settings for me: A school gym, fluorescent lights, hard surfaces for sounds to endlessly bounce around, bleachers, lots of people, and so on. These are environmental triggers that cause mild disorientation and a risk for seizure. Everyone is different, I mean, everyone with a brain tumor is different, and my presentation includes persistent seizures. Environments like the one I just described, including big box retail stores, airports, some large restaurants, are environments where I feel especially vulnerable.

That’s a yuck feelinging when you don’t trust your body to navigate its surroundings.

I posted a picture of Isaac that I took without him noticing. It’s a great picture. His face and body are maturing into the portrait of a young man. I’ve since looked at the picture who knows how many times because my brain likes to experience the pride and joy I felt watching him.

Here’s something that I noticed earlier today.

The angle of my picture is looking up at Isaac from about chest-level.

I realize, at first glance, that observation is not at all interesting to share, but for me, that observation is not an uninteresting piece of exposition to fill word count; the angle of my picture is looking up at Isaac, who is shorter than me, because I was seated at the time I snapped the picture. I was seated because that’s an overstimulating environment, and I’ve learned when navigating these environments, it’s best for me to stay seated, to move slowly, to breathe in rhythm, to center myself in the present moment, and, honestly, to wait for Whitney to help me to my feet and stand beside me because no one knows how to help me move through these environments like Whitney.

When I see that picture now, my brain experiences Isaac’s reality that his dad uses a cane; his dad has to take it slowly; his dad has brain cancer.

The angle of my picture is how proud I am of Isaac.

The angle of my picture is Isaac’s resilience.

The angle of my picture is our family doing our very best to stick together, to get each other’s backs, to make normal our lives that definitely are not.

The angle of my picture is a beautiful, tragic, honest, heartbreaking secret that only those with shared experiences know: All of this is so, so hard. But you can do hard things. And somewhere in the middle of the hard things, you’re at an orchestra concert watching your oldest kid, then you’re joking afterwards with friends that you didn’t know the principal’s name and your wife just said in front of everyone, sarcastically, “Wow, real involved parent.” The secret is that getting the worst news can give you the best perspective.

That’s the angle of my picture.

This blog post was published by Glioblastology on May 15, 2024. It is republished with permission.