Life Unexpected

It is the stuff of nightmares.

A doctor with an apologetic face;

He’s offering a chair, taking a deep breath…

Brain tumour.

My heart clutches.

I look to my husband and I see his face cringe.

Our son snuggles closer between us when we cling and sob out sorrow.

I race home to collect a bag of things,

To hug my girls good-bye.

Their fear and innocence in contrast pushes me on.

I promise them and hold them tight.

Before I can breathe,

process,

hold this new reality in my hands…

We are being rushed toward the helicopter, my tiny son strapped to a stretcher and crying as we roll through the darkness.

I’m kissing my husband goodbye.

“I will be there as fast as I can.”

I want to scream,

To pull my baby in my arms and run far away from all this.

The men are large and strangely comforting in their neon jackets.

They are gentle and calm.

They strap us in and sit quietly in my stunned grief as we fly through the night sky.

My son settles into an exhausted sleep and I hold his hand and stare down at the lights below.

Steadfast love.

It comes to me and pulls together my anguished heart.

Over and over in the last 2 weeks I was drawn to the psalm, not sure why, and now the words bind up my wounds.

“Your steadfast love, O Lord; extends to the heavens, your faithfulness to the clouds.”

“How precious is your steadfast love, O God!”

“Let your steadfast love, O Lord, be upon us, even as we hope in you.”

Steadfast.

Love.

I breathe and take refuge in the angels in neon across from me.

We are landing and they place him back in my arms.  I hold him close and wrap a blanket around his bare arms.  We’ve left without a jacket and the night air is cold.  I grip him to my heart and try to transfer myself to him.  I know he is afraid.

Steadfast love.

We follow strange corridors and crowd into an elevator.  The men in neon surround us and tower over us.  My son gazes wide eyed and scared.

We follow back outside to an ambulance and whisk away.

I breathe gratitude and feel tears well when they allow me to hold him instead of strap him to the stretcher.

We are sitting in a busy hallway on a stacking chair being admitted and still I hold him tight to my chest, the blanket securing him to me.

My eyes feel big and scared.  I feel small and unsure.

My heart flows gratitude when I see my big brother round the corner and come to us.

He stays with us even with his own son lying upstairs.

Steadfast love.

The hours blur as they insert IVs, put on lead lines and watch monitors.

My baby’s skin has always been so spotless and white.

I cringe as they pin him down and poke and press.

He is terrified.

My husband comes and we sit together in shock as our baby drifts to sleep on the cold white hospital bed.

Questions.

Answers?

My phone dies from the texting.

We spend the night in a crowded room trying to sleep in the upright hospital chairs.

We won’t leave him.

He falls into sleep and I am so thankful he can escape this nightmare as I try to get comfortable.

The next day there are tests.

More questions.

Information staggers my mind and makes me stare at my boy unbelieving.

So perfect.

So unblemished.

So innocent.

Brain surgery tomorrow.

9am.

They will cut his scalp open and drill a passage way through his brain.

I hold the words at arms length and turn my eyes so I won’t have to look too close, to let the terror seep in.

I focus on reassuring my toddler, learning new terms and piecing together brain anatomy.

I phone my girls and once again I put on my brave voice.  I am their string of hope and I won’t let them down.

My voice is strong and sure as I promise them and reach for words they can understand.

I give them just enough to ease their anxiety, but not too much.

We take our little boy, clad in hospital gown and pajama pants, to the play room.  For over an hour he plays and we watch him forget about the IV on his arm.  He babbles and laughs and points at the elevators moving up and down.

Steadfast love.

I wonder when he will play again.

That night I sleep on a couch near his room, comforted by knowing that I will be close by if he needs me.

Morning.

Surgery day.

Only now do I let myself Google it…preparing my heart for the fall.  The words I find give me footholds of reassurance and I claim them fiercely.

My husband carries him through the halls to the OR.

We look at books and try to hide our uncertain tears from his little face as we wait.

He likes the trucks and tractors in the book.

For a minute he goes very soft in my arms and snuggles up to my neck.  I squeeze him close and breathe him in.

Steadfast love.

When they take him and his bunny Flopsy away he cries and we force ourselves to turn and walk away.

My mother in law’s arms give me a second to collapse and I feel tears rush in.  She holds my pain for a minute before letting go and it feels good to share a bit.

It is 6 long hours.

I am nervous…but I also feel held.

I am humbled as I realize all the people praying in this moment.

I believe.

Steadfast love.

The surgeon is there.  I anxiously rise to the inevitable and scan his face for hope.

He is so pleased.

Gratitude overwhelms as he describes what we hardly dared hope for.

It is gone.  They’ve gotten every piece they could find.

Steadfast love.

We go in to see him and I could weep with relief.  His chubby cheeks relax in peaceful sleep.  Flopsy is still there with him and we tuck him up by his arm.

Steadfast love.

The uncertainties lurk but we hold onto the hope and embrace it.

Its been a few days now and I sit by my baby’s bedside in the ICU.

The adrenaline rush is collapsing and the truth feels cold and hard beneath my tumbling heart.  I am scared and uncertain in this new reality but still…

Steadfast love.

I reach for the hearts that I know will hold me, us, in all our pain.

He is seizing beneath my trembling hands and his eyes stare dull and lifeless.

They are rushing in, grabbing masks, calling code.

I am being pushed back from his bedside and I cling to my husband’s trembling chest.  More and more…they just keep coming, calling out orders and stats.

I am terrified and the sobs push out of my lips.

I stumble out into the hallway into the waiting arms of my sister in law, who came rushing when she heard the code.

She holds me and says “I’m sorry” as I fall apart.

I know she knows this feeling and I am so grateful for her presence in this moment.

He knew that I would need her tonight and her son is surprisingly, blessedly, fast asleep down one floor in his room.

Steadfast love.

We return to the ICU and I am so grateful.  The carefully monitored room feels familiar and safe after the last 24 hours.

Answers come and we nod in understanding as they explain.

Knowledge gives grip to confidence and I advocate for my son, feeling strong and sure in the normalcy of knowing what is best for him.

Steadfast love.

It’s painful to watch him grasp for strength and my heart staggers under the weight of discouragement.

She knows me well and despite my efforts her arms bring the tears flowing.  It feels better than I thought to let the fear out and fall apart.

Steadfast love.

He meets us on the street corner with the kindest and gentlest of words.

“Don’t worry,” he tells my husband, and we see he really means it.  He gives generously and my eyes fill once again with gratitude for this man who has continually blessed our family again and again and again.

I am humbled and so grateful.

Steadfast love.

The waited on words are offered casually and its anticlimactic as we cautiously grasp hope.

No cancer.

No further treatments needed.

“I see no reason he should not have a full recovery.”

Really?!

Steadfast love.

A weight falls off our shoulders and breath comes easier.

For the first time in days I see light.

I wake up to the video and I smile the biggest smile.  It’s my little boy grinning his crooked little smile and high fiving Daddy with his right hand!  The side that’s been weakened since surgery.

Steadfast love.

So much joy with one small milestone!

They keep coming and coming.

First kick,

first reach,

first grasp of my finger,

first step,

first bite.

So many reasons to be grateful.

Steadfast love.

I talk to them on the phone and they are bubbling over with happiness and news.

“I miss you, Mommy.”

“I miss you, too.”

And then she goes on with what Nana said, what Papa did, what happened at school…

I smile the biggest smile as I listen to her happy voice.

They are safe and happy, even though they are so far from me.

They have found their people and they know who they belong with right now.

How do we deserve to be loved so unconditionally and fully?

Steadfast love.

It’s our first weekend home!

We get a pass!

I am ecstatic and my heart actually skips a beat as we drive into our small town.

It’s so beautiful and green everywhere!

We’ve been gone a month and so much has changed.

Life everywhere.

I drink in the green trees, the breeze on my face as it blows off the bay, the sight of my children all playing together in the back yard.

Steadfast love.

Life has changed, and I miss the way it used to be.

But in it all, I am so grateful.

And I know…

In the journey there is beauty,

growth,

redemption,

and always…

Steadfast love.

-AF