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Francie's Story

Chapter 11: The Monster Under our Bed

Any parent of young kids knows that the bed time routine is a deeply complex and ever changing family ritual.

Shiloh is our good sleeper. After a cold baba, snuggles, and Somewhere Over The Rainbow, she demands to be put in her crib. She curls up with a smile and sleeps in late.

Francie is a good sleeper too! Most nights, I stay up late waiting for the beep from her pump to let me know she’s done eating. I unhook her and flush the line, then, carefully carry her upstairs to a small crib in our room.

Wilder, however, is a whole evenings worth of entertainment.

A four course dinner begins around seven, starting with blueberries, then moving along to half a nut-butter & jelly sandwich, microwaved chicken nuggets, and a celebratory lollipop. If the sandwich sits out too long and gets “scratchy” it is sent back to the kitchen. This culinary experience spans three rooms, an iPad, and a couch. Upon completion, the bed time negotiations begin.

“Bed time in 5 minutes”, I say.

Wilder has suddenly lost his hearing.

After multiple rounds of goodnight hugs we head up the stairs. But not before frantic little feet pound down the hallway to find Red Lovey, Wilder’s constant companion, a blankey pretending to be a fox, or vice versa.

We finally climb up the stairs.

We pick out jammies, brush teeth, and debate multiple books, before we both settle into his twin bed. Noise machines from every bedroom mingle together to make the house feel alive, almost womb like.

This is my favorite time of day. It’s just the two of us. We lie together and talk. We tell jokes with no punch line, rhyme made-up words, invent made up stories that twist and turn through a multiverse of favorite characters, and sometimes, on our best night, we just talk.

As his body relaxes and the little boy energy tucks itself away in the blankets I pull him in for a big hug and say, “You’re growing up so fast!”

“Tomorrow do you think I’ll be bigger, like you?”, He asks me.

“Someday”, I respond.

“But, I don’t want to get big and be a daddy, and I don’t want you to be a grandpa.”

For the next few minutes we talk, and I watch my son wrestle with his vague, but growing understanding of change. Time is a thief.

My heart breaks as I hear him despair;

“I don’t want to get big, I don’t want to be a man, I want to be a boy!”

Our bed time routine finishes with bed time songs, a few hymns, and always, Somewhere Over The Rainbow. I tuck in Wilder, folding the sheet over his blanket, just like my mom did. Then, I return twice for more hugs and kisses, and finally, I retreat downstairs.This interlude is temporary as I wait for the nightly chorus of, “dad, daaad, Dad, DAAAD” to swell down the hallway.

When I return, I find Wilder sitting up, teary eyed.

“Dad, I’m scared! I’m scared of the monsters. You left me all alone.”

And almost every night I pull him close and say;

“There are no monsters buddy, they’re pretend. Just in books and in movies. Besides, I’m here to protect you, I’m not letting any monsters get into the house. You’re safe and sound!”

His eyes get heavier and I tuck him in for a final time before heading back downstairs. Back down to Francie, back down to a world where monsters are very real.

As I sit and wait for her feed to finish and listen for the first signs of an impending projectile puke, I lock the door in my head to the monsters that like to creep out when I’m alone with her. The What if Monster, the Heart Failure Monster, the Surgery Monster, Doubt, Anger, Despair. There are many monsters that wander in the darkness of my mind.

For a few, short, beautiful years, our kids exist in a bubble of perfect innocence. Failure, humiliation, deceit, pain, loss, and death are all still strangers to them. As we grow up there comes a time when we stop fearing the crocodile and we start running from the, “tick tick tick,” of the clock.

Tomorrow morning we head to Francie’s first open heart surgery. The amazing team at Rady Children’s Hospital lead by Dr. Nigro, will work to repair two holes in Francie’s heart (a VSD and an ASD). Because of the placement of the holes, a minimally invasive catheter is not an option and her heart and lungs will need to be stopped and a bypass machine will be used to support her while the surgery takes place. Early on we feared that Francie’s Cardiomyopathy would complicate this normally highly successful procedure, but her incredible progress has left everyone feeling confident.

Buried under all of that optimism crawls a grotesque fear. The idea of carrying your tiny daughter, who is just learning to smile and laugh, to a cold table and then leaving her alone to be intubated, anesthetized, have her chest cracked open, her heart stopped, and tiny holes repaired is, unfathomable. Even when the surgery is necessary. The procedure, routine. The outcome, positive. My body still shakes to think about it.

After the surgery Laura and I will trade nights sleeping in the CTICU. Our family bedtime routine will be different. The familiar hum of the sound machine will be replaced with hospital alarms and chef’s prepared meals will only be delivered through a feeding tube. In the darkness, real monsters will sit quietly waiting for an invitation.

But no bedtime routine is over without a song. And tomorrow night, as with ever other night we will sing:

“Somewhere over the rainbow, skies are blue,
And the dreams that you dare to dream really do come true.
Someday I'll wish upon a star and wake up where the clouds are far behind me. Where troubles melt like lemon drops away above the chimney tops,
That's where you'll find me.”

Tomorrow night, instead of putting Wilder to bed, Francie will be putting me to bed. As I pull the hospital sheets up, and fold them over, I’ll have Francie there to talk to. And if my monsters get too loud, I can call out to her and one squeeze of her tiny hand will remind me that, in her world, monsters still aren’t real.

Lessons For Francie: No Monster is worth losing sleep over.

Written by
Michael Anderson
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