For Cowden’s Syndrome patients, there are surgeries.  There are different kinds for different people.  But, inevitably there are surgeries.

When most young people talk about being afraid of the dark, many parents dismiss their concerns.  They put a night light on for a bit, and they tell them there is nothing to worry about.  Because for typical children, “dark” is that brief time in their rooms before they fall asleep.

But, if you have had about a surgery a year from the time you were too young to fully comprehend the gravity of the tumor causing condition you live with…  the “dark” also comes awaiting anesthesia on an operating table in a cold room full of strangers.  The “dark” always comes after an uncomfortable IV placement and hours of waiting your turn, thirsty and hungry.  The “dark” always comes before you wake up in inevitable pain.

The nightlight in my teen’s room came from scraps her dad collected at work.  Really cool scraps.  And since he’s an electrician, adding the LED was easy.

That light has been in place as long as I can remember.  It provided a gentle glow when the nightmares from the PTSD triggered by one too many manually induced episodes of “dark” would provoke relentless nightmares.

It lit the room for the years my presence was necessary to get past the falling asleep part.

You know, that in between place between awake and asleep…

That time when all the thoughts you try to push away find their way in…

And then the dog took my place, the dog and the light.

But bad hips made it tougher for the dog to remain a soothing, breathing presence in the night.

So in January we got our older girl into a bed downstairs and we found a shelter dog at the Brooklyn ASPCA.  He was abandoned.  Tied to a tree in a park.  He was about 6 months old and in dire need of love. (and structure, and training, but MOSTLY love)

April, our older girl welcomed him right away.

About a week into his stay in his new home, Jax curled up on my girl’s bed and fell asleep.

Turns out he is soothed by the breathing of another too.

This week after MONTHS of being home my girl told me it was time to take the nightlight down.

“I’m just not afraid of the dark anymore.”

People who haven’t lived our lives will say – ‘It’s about time’  But, she and I know it’s time, when it’s time.

So many things have happened these last few months during this COVID-19 crisis.  Maybe the most remarkable is the family time we’ve shared.  We have learned even more about each other, all three of us.

She asks tough questions, of herself and everyone she speaks with.

She holds herself to the same standard she expects of others, and truthfully those standards are so high she’s often disappointed.  It’s a balancing act.

She is driven.  Focused.  Loyal. Compassionate.

She managed a 4.0 AGAIN.

I will pass Tinkerbell off to another beautiful girl, and hope the Pixie Dust blesses her dreams.

“I’m just not afraid of the dark anymore…”

My beautiful girl, with your heart and God’s grace you will change the world.

As for me, I’m not quite ready to part with my nightlight, as we remain…

#beatingcowdens