Brain Tumor Awareness Month, Day 19

Since I failed (reconsidered) and revised my goal to post daily this month, I was challenged to figure out how to name this post. It didn’t seem right to call it “Day 12” or “Day 13” in sequence after “Day 11,” which posted May 12 (because I missed May 1). And it was too odd to call it “Day Y,” following “Day X,” which posted on May 14, plus that would only leave me with one more post for the month, which would have to be “Day Z.”

I hope you’re laughing. I am. But why do I always make things so complicated?

My husband would say I overthink things, but I know I just think and feel deeply. So much so, it’s hard to figure myself out. It makes writing a memoir especially hard. Not only am I trying to tell my story–of my rumble with my son’s childhood brain tumor–but I’m trying to figure out who I was 20 years ago, and how I became that person. Then I have to figure out who I am today, and how I’m different.

The writing process has been hard, but so much of it is finally starting to come together. I’m refreshed from my short break from daily posts, and I’ve been devoting my writing energy to my manuscript.

I wrote the excerpt below to explain, in part, why Matthew went undiagnosed for so long. If you’ve had a child who faced unusual challenges, or if you’ve dealt with a medical mystery, you may relate.

Matthew’s behavior was like a new freckle on the back of your leg. “It’s probably nothing,” you tell yourself. And you watch it. It gets a little bigger, so you look up skin cancer just to be sure, relieved to see it doesn’t meet those criteria. But you watch. Then it gets a little darker, so you twist your leg around, and ask a loved one to take a peek.“It looks normal to me,” they say, but you read up on melanoma to be sure. And you watch. Then it gets bumpy, so you finally call the dermatologist, who says, “Don’t worry.” And you try not to worry. But you watch.

We all have to find balance in this life–the pull toward panic, jumping to conclusions, and thinking the worst, against the pull toward calm and reason and wait-and-watch.

Both approaches are valid in different circumstances.

I’ve learned this the hard way.

I don’t know that there’s a formula for predicting which side should win when in our tug of war between panic and reason. I doubt there’s a checklist or logarithm or how-to listicle to guide us. If you have a theory, though, I’d love to hear it.

I do believe, to keep ourselves strong and sane, both teams need to be available to us. If they’re both pulling their weight, we can make our best decision.

That opens us to the gift of letting go, knowing that we used all of our resources, and have done the best we could.

I’ve learned this the hard way, too.

Brain Tumor Awareness Month, Day 2

Today, May 3, 2018, my son Matt starts a new job.

He’s 31 and has been on his own for awhile, so it may not sound like a big deal, but it is.

It’s a big deal because there were times when my husband Michael and I didn’t know what to expect of our son’s future. You think that way when your child has a brain tumor.

After Matt was diagnosed at age 11 with a pylocytic astrocytoma, we were told he would “bounce back.” Those were the exact words of the neurosurgeon on the morning an MRI answered a question that had dogged us for three years: “What’s wrong with Matt?

The neurosurgeon said that kids with these types of tumors “bounce back.” And we read  stories of kids who did indeed bounce back, rather quickly, and seemingly effortlessly.

But Matt didn’t bounce back. His tumor had gone undiagnosed for too long, and the resulting hydrocephalus was severe. We all had a long road ahead of us, still.

Jumping ahead 20 years, and today, Matt starts a really good job, with benefits and retirement and purpose. 

It’s a big deal and I couldn’t be prouder.