Tuesday, September 29, 2015

when it's worth dying for

I walked in the house with my arms piled full of trash from the car.  

It's amazing how we automatically move through the simple tasks of our days in the middle of crisis.  Sometimes it's the only thing that holds us together.  


The kids were on my heels.  I sat everything on the counter and headed for the table by the back door – it held the closest box of tissues.  He saw the tears still fresh on my cheeks and I'm sure my face was red and tired.  I couldn't make eye contact or I would erupt again.  I didn’t trust myself to speak.

Joey cried the hardest in the days following Lucy's diagnosis.  I had cried too, but the bulk of my tears didn't come until months later.
I've had friends with kids who are plagued by chronic health conditions.  As a school psychologist I worked with families who received devastating diagnoses.  But in every case my experience lasted only moments, maybe hours.  I could always walk away from it.  Not anymore.  

On that particular day it surrounded me.  When I woke up in the morning.  When I was cooking breakfast.  When I was driving to the store.  Chronic illness lives with me now.  It promises to stay forever.  When something difficult moves in and doesn't have any plans of moving on it's hard to keep the flame of hope alive.  There is always something to put it out.

I am high on empathy.  It's a great trait for someone who works with people.  It can be hard for a mom.  Empathy means that you absorb the emotions of other people and experience them as if they were your own.  When you have a child who demonstrates every emotion imaginable in a 5 minute span that's a lot to absorb.  It's hard to wring it all back out.  Sometimes you walk around heavy and sopping wet in it all day long.  Oh, to feel lighter...

In the middle of a season like that you might have suggested I take a nice hot shower and listen to Pharrell Williams to get 'happy' again - to get a little pep back in my step.  But I knew that wasn't the solution for me.  I needed something different.  I didn't need to escape this new reality, I needed to learn how to endure...with hope.  The dying needed to happen to make room for this new life.  As painful as it was, I needed to die.


I did opt for the shower, with the door locked.  But I chose Audrey Assad instead.  I chose sorrowful music because my heart felt sorrowful and weary.  Instead of ignoring my heart - trying to cover up the dark condition of it - I needed to let it be heard.  
I needed to feel it completely - 
the pain and 
fear and 
grief and 
deep, deep sadness for our condition.  
And by our condition I mean 'our' condition - yours and mine.  Broken hearts are the result of a broken world.  For me it was the burden of a child with a chronic illness for which there is no cure and no clear course of treatment.  For you it might be something else - something that leaves you all heavy and sopping wet.

We have to feel it completely.  We have to be brave enough to do that.  We have to step into the pain so that it can kill us completely.  Nobody wants to walk around half-dead, hanging on by a thread, covering it all up with a smile and a cute new top we bought on sale at Target. 
I stood in the shower with my eyes closed and the water, mixed with my tears, pouring down.  I listened to the truth of the words being sung knowingly, and I died.  It was deeply painful, but it gave way - bit by bit - to hope.   

When you find a safe place to unravel,
when you feel the arms of eternity wrapping tight around you...
you stay.  You don't run and hide, or turn and fight.  You stay there.  

It is not a time of rejoicing.  
It is not a time of rising.  
It is not a time of being resurrected.  
It is not a time of boisterous triumphant victory.

It is a time to mourn.
It is a time to be held. 
It is a time of surrender. 
It is a time of dying, so that eventually you can live again. 

In that season,  we were still figuring out how to live with Type 1 Diabetes.  We still didn't have a handle on her Graves' Disease.  We were spending the majority of our time visiting different doctors and trying different therapies and swimming in questions without answers.  I had a desperate heart.

At that time I had to apologize daily for her hitting or punching or yelling or just giving an evil death stare.  I was not apologizing for her - for who she is - I was apologizing for the way disease manifests itself.   I was apologizing for how it detonates like a bomb inside of her and then sends shrapnel flying into anyone close to her.  

I am closest to her.  
I got the most hits.  
I took them because it's what I was set here to do.  
To be her defender, 
protector, 
advocate, 
caregiver, 
nurturer, and most of all, 
the great big flashing arrow that points her to Jesus.  

I can say he is the great hope of this world and then, in a season like that, I can live it.  I can grab desperately onto the truth that He is the only person in the history of the world to actually overcome the world.  And boy did we have a world that needed overcoming.
Overcome with peace, 
with relief, 
with healing, 
with mercy, 
with grace, 
with an eternal hope.
I am part of a support group for mothers of children who have received a diagnosis of Graves Disease.  There are nearly 150 of us in the group from all over the world.  I have never met a single one of them face to face but they understood more about the battle I was fighting than anyone in the world.  We type in letters on a keyboard that form pieces of our hearts - our weary, breaking hearts.  I don’t mean to sound gloom and doom but many days are that way for us.  
These are some of the words we pour out…
I’m a mess right now.
Trying to pull myself out of this depression.
I feel so distant from my family because they don’t understand this is a real thing.
I had to pull my daughter out of school.
This is such a rocky road.
I have reached my breaking point.
I cried so much today.

Whether you have dealt with Graves Disease or not, on any given day you may have said those same things.  Our struggles can be different but the emotions so very similar.

That same dying day, Lucy snuck downstairs after her bedtime and stood close waiting for my typing fingers to pause.  I looked at her with soft eyes and smiled.  Her cheeks were pink from the day’s sun.  Her freckles looked to have doubled.  Her eyes were questioning when she said - I didn’t mean to make you sad today.  I can't go to sleep because I’m sad I made you sad.  

I propped her little chin up on the tips of my fingers and guided her face up to mine so that I could look deep into her eyes.  And then I told her…

You make me happy.  
You make me smile.  
You don't ever make me sad.
Mommy wasn’t sad because of you today.  I was sad because sometimes life is hard.  Sometimes we have bad days.  Sometimes I get upset that you have to deal with all this Type 1 and Graves Disease business, but I always have hope.  I always trust God.  I always believe he will bring something good out of this.  

And then I told her the story of Jehoshaphat.  
She listened.  
The questions in her eyes turned to answers.  She didn’t say a word but I know she heard it all.  
How a great king faced great opposition.  
How, despite overwhelming odds, God fought for his children when they cried out to him.  
How victory in difficult times comes not from us but from him.  
How God uses us in the middle of our saddest, scariest times to point others to Him and His power.
How all of this is possible because of God's great love for us and his promise to never leave us...
     even when we are dying.  

I know she locked it all away.  That’s what she does.  She puts my words in a treasure box inside of her.  I have to make sure they are something worth treasuring.  She will bring them out another day, and for that I am so grateful - that she always hears me.  Above the sound of Graves rage and the roller coaster of fluctuating blood sugars, she hears my voice.  She hears the truth.  One way or another - it will set her free.  It has set me free.

It's been nearly two years since those tears came like a flood.

Our life isn't perfect but we are alive.  
We are full of hope.  
We are free.  

The battle has been won, not by us, but for us.  
Jesus himself showed us what it means to endure, when you want to escape.  
There are some things well worth dying for.