I believed he could fly.

It’s appropriate that it’s the end of Brain Tumor Awareness Month, as I came to the end of my current memoir manuscript revisions yesterday, and sent them off to my freelance editor. It’s a good time to take a break from that project and round out my life with some gardening, building my social media platforms (yuck), and writing personal essays to submit to literary magazines.

After my break, I’ll be ready to tackle section 3 of my manuscript, which needs a lot of TLC. It’s barely even a “shitty first draft,” a phrase coined by author Anne Lamott. Section 3 begins in 1998, about two months after my son Matthew’s diagnosis, and goes through around 2016. It’s been a long, slow road to recovery. I’ll avoid this cliche in the final draft, but for now I’ll tell you that his diagnosis and surgery was the eye of a very long storm.

I was scrolling through my manuscript draft to see if there was another excerpt I could share with you. So much of the story has to be told in context. It’s not like Matthew had a wicked headache or a seizure, got diagnosed, had surgery, and moved on to recovery. It was a complex evolution, for him and for me. 

Few, if any, stories of serious illness are simple to tell. And when the illness involves the brain, which controls cognition, emotion, and personality, as well as every aspect of the body’s functioning, it’s hard to summarize. It would take a book to explain it completely. Hence, my memoir.

I’ll share with you an excerpt from Matthew’s fifth grade graduation in June 1997. It was a tough year for him, and for us, as no one could figure out why he was in such decline. The scene encapsulates much of our struggle.

I mention the song I Believe I Can Fly, by R Kelly. Here’s a link to the song, if you’d like to listen along. 

At long last, the end of the school year was at hand. For Matthew, it must have felt like surfacing from an oyster dive, finally being able to breathe without the weight of homework and school expectations. That’s how it felt for me, except that I had an anchor wrapped around my foot in the shape of a question mark—What’s wrong with Matthew?—and I wouldn’t be freed until the ground was a sea of withered leaves.  

Matthew’s graduation from elementary school was marked by ceremonies and celebrations. Other than his tics, Matthew looked so normal, clowning around with his classmates, goofing off, fully engaged in the activities. During the moving up ceremony, his class assembled on steps in front of the stage in the cafeteria. The girls wore curls and bows and flowered dresses, many of the boys, including Matthew, sported buzz cuts and oversized shirts. Mike and I sat in familiar uncomfortable folding chairs, craning our necks to see. As the students jostled for position, I worried that Matthew would trip, or fall off. Once the group stilled, Matthew, a steadfast rule-follower, focused his eyes on the music teacher’s face. She raised her arms. His face shone. When the tinny, taped music played the hit song “I believe I can fly,” by R Kelly, the lump in my throat was suffocating.

On one line, I don’t remember which, the boys and girls held out their arms, pointing into the audience. Matthew’s arm was the straightest, reaching for the future. My heart overflowed with love, spilled it onto the floor, flooded the building, and blanketed the neighborhood. 

I used to think that I could not go on

And life was nothing but an awful song …

If I can see it, then I can do it

If I just believe it, there’s nothing to it …

I believe I can fly …

See I was on the verge of breaking down

Sometimes silence can seem so loud

There are miracles in life I must achieve

But first I know it starts inside of me.

I did believe. I believed Matthew could fly. We just had to figure out how. 

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 X.

Yesterday, I was so busy enjoying Mothers Day, I forgot to write a daily post, which ruined my perfect record so far this month. Now I don’t know what to call this day, so I’ve dubbed it “Day X.”

The truth is, I didn’t enjoy all of Mother’s Day.

I enjoyed when my son Matt came over to visit. What a simple gift– just to be with him. You don’t take that stuff for granted when you’ve rumbled with a brain tumor like my family has.

I didn’t enjoy that my chronic health issues again caused me to cancel our plans to go out.

I enjoyed talking with my other son Steve, and my mom, on the phone,

I enjoyed when my husband salvaged the day by cooking dinner on the grill, while I plopped down on a lawn chair in the beautiful sun with a glass of wine and a book.

That’s life. Ups and downs and sideways and flip-flops.

Since life is that way, today I decided I have to break my commitment to daily posts.

I hate doing it. I hate setting a goal and then reneging. I wish I didn’t go public, that I had kept my intentions to myself.

But managing my health conditions and finishing my memoir manuscript are higher priorities than daily posting, and there just aren’t enough hours in the day to do it all.

Sometimes it takes more courage to quit than it does to soldier on, even though quitting still feels like crap. (Although I have a feeling as soon as I hit “publish,” I’ll feel relieved.)

There were so many other things I wanted tell you this month about how a brain tumor impacted my life. I’ll get to them eventually, just not as quickly as I had hoped.

And if I leave anything out, well, you’ll just have to buy my book.