Personal growth in a story I didn't want to tell.

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.


  • An emerging writer in upstate, NY, Karen DeBonis tells her story on her website, in publications like the NY Times, (a Tiny Love Story), in her “Become Emboldened” projects, and elsewhere. "Growth: A Mother, Her Son, and the Brain Tumor They Survived" is Karen’s transformational memoir about the clash between her naive expectations of motherhood and her son's needs, which destroys her confidence and threatened her stability (Available for representation.)

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