Thursday, March 27, 2014

Holding On

I find myself holding on...
to her favorite blanket,
the drawing that she made that morning,
the framed picture that has forever captured her beautiful smile.

I cannot bring myself to put away her pink birthday dress,
the last ribbon that still has a few strands 
of her hair attached,
her sippy cup.

And still...
I feel her slipping.

I cannot relive those final moments.
The sound of ambulance sirens makes my heart race.
And I never want to step foot in a hospital again.
I remember the eerie silence,
the faces of strangers,
footsteps echoing in the long hallway.
I remember the coldness of the night 
and the first snowflakes falling as grief and shock consumed me.

The memories come in flashes. 
I see her in my dreams...
I hear her sweet laughter.
I reach for her...
and she fades.

I sound redundant. 
I smile and play the role well 
because I know what is expected.
People don't ask anymore
and I fear that she has long been forgotten.

At home
we are moving towards honoring her...
preserving her memory.
I want our children to be strong...
And they are.
I do not want them to fear death.
I want them to know that this life
is not the prize.
They still choke back tears
and their voices crack when they talk about her.
But they have found beauty...
even in death.
They remind us of her.
And their connection to that past is healing.
They want to go back to the places she liked best.
They want to feel her again.

"Remember when we took Haven to the beach?"

"Remember how much Haven loved our picnics in the woods? 
I can't wait until summer to go again."

"Remember how Haven could use chopsticks better than anyone?"

It is so difficult to think of the future...
one without her.

"We cannot understand.
The best is perhaps what we understand the least."
C.S. Lewis

Death is a constant in life...
and I find this ever growing need to make sense of such a profound loss.
Perhaps I shouldn't.

There are memories to relive...
footsteps to retrace.
Places that we will find her again.
There will be a moment when the past and present collide.
She is with us still. 
We hear her voice singing along to her favorite song.
I catch the sunlight streaming at the very right moment
and I remember how it reflected in her eyes.
We visit the woods she loved so much...
we feel her.
And it all comes back.

"You were here...I remember it."

Sunday, March 9, 2014

4 Months Ago...

"Her absence is like the sky,
spread over everything."
C.S. Lewis

I could see her future.
But as I was writing her story in my mind...God had already written hers.
And they did not end the same.

In my story...I could see her growing into a beautiful young woman.
I could see her living a life filled with joy and hope. I envisioned sharing memories and laughter that would carry her into adulthood.

But the reality is her little body had already started working against her. Long before anyone realized it. And while we knew she was terribly complicated and medically complex...we did not know the missing piece. She was terminal.

And nothing in the world could buy her more time.

That day everything changed. And for 4 months we've been living with a grief that encompasses us. It tears my heart and threatens to destroy the faith I've had my entire life.

Thank you cards sit undelivered on my table. Words left unsaid. These little things that post-grief feel like they will only bring unwanted closure.

I spent the first 2 months numbed by shock and carried by this little net of amazing family and friends who picked up the shattered pieces. And I moved into a state of anger. Predictable. I watched myself going through the motions of grief. Bitter...that a God I serve would choose to take my daughter. Resentment at people who dared to complain about things that simply didn't matter. Because nothing matters anymore. Not when you've experienced loss.

And then it lifted...and there is sadness. A consuming sadness that leaves me raw and vulnerable.
With a longing...that is desperate. 
And an ache that proves futile.
Some days I feel like I am on a neverending quest to breathe again.

I miss her.
I miss everything about her.
.She filled our life with joy. 
"If there ever comes a day when we can't be together,
keep me in your heart.
I'll stay there forever."
A.A. Milne

Thank you to my amazing friend, Caleb Lococo for his time and dedication to honoring our precious Haven through this video:

Monday, November 4, 2013

Ethan's Wish Trip

"Some day you will be old enough
to start reading fairy tales again."
C. S. Lewis

This trip?
It was epic.

Children wore battle scars heroically.
And beautifully.
We saw our reflections mirrored back
in the faces of so many of these parents.

And then...

Guards were let down.
And the walls we all have fiercely built to protect 
ourselves and our families...
Because for this week...
we were safe.

It was the truest form of living in this moment...


"And now these three remain:
 faith, hope, and love.
But the greatest of these is love."
I Corinthians 13:13

Saturday, October 26, 2013

Change of Plans

But God had other plans...
We upped Ethan's Hydrochortisone in an
attempt to avoid a hospital stay. 
By midnight his fever was gone
and he was no longer lethargic.
This morning he was back to his old self.

The trip was cancelled yesterday afternoon,
but this morning we got a phone call from our coordinator.
Within an hour, she had everything back up and running.

And now...

We are on our way!

Thursday, October 24, 2013


"Not only so,
but we also glory in our sufferings,
because we know that suffering produces perseverance;
perseverance, character;
and character, hope."
Romans 5:3,4

Sometimes life deals you blows.
Ethan is very sick...
his wish trip is off.

And it doesn't feel fair.
It's one of those "life teaching" moments
that you really don't have the heart 
to effectively 
teach your children.

Because beyond the trip...
is the uncertainty of Ethan's health.
His life.

And I choke back tears because
we came so close.
Worries in the back of my mind resurface...
what if this time... 
what if...

I wanted to see his face light up.
I wanted the pictures...
the memories. 
Because I know what this trip was really about.
I wanted to celebrate his life...
in some desperate attempt 
that maybe I could make it better 
for just a little while.

And maybe that's the lesson in this.
I can't.

My heart is breaking.

Eye on the prize...
this life really isn't what it's about.
And what we have built here
in our little family is priceless.

We'll get him there...
and when we do
it will be all the sweeter.
Because we know how perseverance makes life richer.

"I press on toward the goal
to win the prize 
for which God has called me heavenward 
in Christ Jesus."
Philippians 3:14

Monday, October 21, 2013

Unfailing Love

"It was when I was happiest that I longed most... 
The sweetest thing in all my life
has been the longing...
to find the place where all the beauty came from."
C.S. Lewis

Ethan's surgery was 
 a success.

His doctor found a 
long piece of material
stuck in his esophagus...
the reason for his frequent
gagging and coughing episodes.
Ethan is very orally aversive
so we have no idea where that came from.

It's been a challenging week with Haven
after a diagnosis of Post Traumatic Stress Disorder.
The road to healing will be long.

This month...
there have been some really rough moments
that made me realize parenting is hard.
And parenting the hurt child...
is even harder.

Leading these children
to a place of peace is exhausting.
Especially when the end result holds no certainty.
Sometimes when the outcome
isn't tangible...
our efforts seem futile.

It's times like this I realize
how very much our own relationships
with God are so similar...
the times when the ugly scars and struggles
of our lives
prevent us from the arms
of our loving Savior.

Because we face Him...
guarded and armed for battle.

It breaks me.
And it changes me.
It brings me a desire...
a great longing...
for something more in my walk with God.
Something better.

And God?
He continues to pour out His mercies.
To give grace.
Unfailing love.
To teach me how this is done...

"How precious is your unfailing love, O God!
People take refuge in the shadow of your wings."
Psalm 36:7

Sunday, October 13, 2013

Ethan's Fight

"The pain I feel now
is the happiness I had before.
That's the deal."
C.S. Lewis

Today, as I gave percussions and 
suctioned Ethan for what 
seemed like the millionth time...
I thought 
"I'm not cut out for this..."

His gagging and coughing episodes
 have been frequent
and last a good 20 minutes
before he gets a break.

His cough fluctuates between
stridorous and wheezy.
He his breathing becomes laborious. 
And he winces in pain.

It is in these moments...
when everything closes in.
I can't bring him relief.
And because there is no "cure"
nothing resolves it. 
It is a vicious cycle.
A tiring one.

But he keeps fighting...
And as a result...
so do I.

Tomorrow is Ethan's surgery.
Please cover him in prayer...