In September 2016, when I realized my short-term disability leave was going to be long-term, I knew it was a gift from the universe and I couldn’t blow it again.
The gift was time—time to finish the memoir I began over 15 years ago.
When I started writing, I told the story of my son’s childhood brain tumor, which he and I both survived. Our saga had more twists and turns than a whodunit novel; if it was fiction, it would be unbelievable.
Then I stopped writing because parenting a son with brain trauma leaves little energy for anything else.
After two decades, with my recent gift of time, the memoir called and I answered. Below you can read what I wrote then.
But here’s a 2018 update: the story has changed.
It’s not about the brain tumor anymore. Oh, the twists and turns are still there, but the real story is about how poorly suited I was as a woman and a mom to handle the challenge, and how bumbling through the years-long medical drama taught me more about myself than I could have learned in a dozen perfect lifetimes.
That’s my truth. Admitting it—owning up—has been almost as painful as living through it. Personal growth ain’t easy.
And that’s why I persevere. Because truth is the best story.
Maybe I don’t want to tell this story. On writing my memoir.
I shiver intensely in my home office in spite of the portable heater blasting at my side and the sweatshirt hood cinched around my face. But I’m not cold.
I have the beginnings of heartburn and a headache. But I’m not sick.
I’m about to click “open” on the computer folder marked 6500. It looks pretty harmless – it’s only the files we exported years ago from our ancient Power PC. But I know what’s in there.
When it opens, I stare at the screen and put my hands in my lap for a few minutes. There it is – what I was looking for. I click on the folder marked BOOK.
I shake so uncontrollably now it hurts my shoulders.
These are the files that catch my eye:
Chapter 3: Matt’s early years
That was before the whole nightmare began.
I imagine him running through the yard, Sparky – our border collie mutt – chasing after him.
Chapter 5: Dr. W
I picture her round face.
I know her full name like it was yesterday. We liked her so much at first.
Chapter 6: Lorenzo’s Oil
My heart pounds as I see the words in print.I remember sitting at the kitchen table, reading a magazine, discovering the article. It was prophetic. It kept popping up like a bad dream those last few months.
Chapter 11: MRI day
That terrible, wonderful day. The day Matt got another diagnosis, this time the right one.
I close my eyes, put my hands back in my lap.
Maybe I can’t do this. Maybe I can’t tell this story after all.
I take a deep breath.
Maybe I don’t want to tell it.
It’s been so long since I cried about my story, but I cry now. I don’t know where to start – what to open first. I sit and stare at the screen for awhile again. I’m afraid to go deeper.
Finally, I pick a file, click, and get this message:
Adobe Acrobat Reader DC could not open ‘chap 2’ because it is either not a supported file type or because the file has been damaged.
Oh shit. Are you kidding me? All this time, and I can’t open my files? I can’t write all this again – I can’t start over.
I try a few more files, but they all produce the same message.
I hope Michael [my husband] can figure it out, otherwise I’m screwed.
But a small part of me is relieved for the moment. I took the plunge without having to pierce the murky waters today. Maybe it’s a good place to stop, go make some tea, think about something else.
As I head downstairs, I give thanks that my story ended the way it did. I remind myself that Matthew is alive and healthy, a grown young man now, out on his own. Every time I see him, I can wrap my arms around him, marvel at his intelligence, laugh at his wit, rejoice in the mundane details of his life.
He got through it.
So will I.