Necessary Pain

"If we look for ways to get rid of necessary pain, we'll be disillusioned or misled.  For people who define real change as the elimination of inevitable struggle, the final chapters will be terribly disappointing."
Larry Crabb, Inside Out

Six months ago I was on a plane over the Atlantic, bound once again for the frozen winter tundra of Ukraine.  I had plans and goals for the month - all of my ducks were lined perfectly in a row.  Training for the staff.  Completing Romaniv's sensory room.  Guiding the leadership team in establishing professional guidelines that would bring their rehab services to a new level of quality and success.  Little did I know - back at home - a life-threatening infection was beginning to flourish within the body of my younger brother Ben.

Born when I was six years old, Ben came into my life and immediately began burrowing his way into the core of my being.  I can't remember a day going by without him - I seem to carry his warmth and smiles with me no matter where I am.  He was and continues to be the fuel to my heart's fire for bringing hope to the lost and forgotten disabled children of the world.  Even today, I remain amazed at how a non-verbal disabled boy can have so much sway over my life's aspirations.  Or how a boy with one-too-many chromosomes could impact the lives of other boys with disabilities just like him, living half a world away.

I was in Ukraine for a mere two weeks when I got the message about Ben.  Our team had just returned from the two-hour, treacherous drive across Ukraine's icy roads back from Romaniv orphanage.  My mind could hardly wrap around the words I was reading from my dad.  "Ben's lungs were failing.  Ben was sent to the intensive care unit.  Ben may not make it."  Before I knew it, I was on yet another plane over the Atlantic to be with my hurting family.

When I first saw him, my heart sank.  He was lying in bed unconscious, connected to a machine that breathed for him.  His lungs were filled with fluid, effectively drowning him from within.  For days and weeks, my parents and I watched him slowly get worse - declining more and more each day.  We were losing him.

 

At first, we took turns staying overnight in the hospital.  My dad - our champion of hope - took the brunt of it.  My mom and I would go home at night and sleep together, each clutching a possession of Ben's ..... his baseball hat ..... his favorite t-shirt ..... as if it was him lying right next to us.  As each day went by with more bad news than good, we started to realize that staying overnight was no longer practical.  It became clear that Ben was not coming home any time soon.

The following week, Ben faced a critical surgery that drained a full 2 liters of fluid from one of his lungs.  Never knowing what each day would bring, we found ourselves clinging to any crumb of hope that we could find.  Our eyes remained glued to the hospital screen that displayed his vital signs.  A feeling of terror would wash over us each time the alarms went off - indicating that his measurements were below acceptable levels.  

Days went by with no improvement and the doctors began conversations about "last ditch efforts" to save his life.  One such effort was a specialized hospital bed, called a RotoProne bed.  Designed to keep the body in continuous rotation to break up the inflammation and fluid, it was the doctors' hope that this would be the trick.  Chemically paralyzed and securely strapped onto the RotoProne bed, we watched as the bed continuously rotated Ben's body 360 degrees as if he was on a rotisserie.  His face blistered and the bed creaked from the weight of his body, but after two different administrations of the RotoProne treatment, his numbers began to improve.

Finally, after yet another surgery to carve a hole in his neck that helped his breathing, Ben's health turned the corner.  And just like that - within a matter of days - we were no longer faced with decisions of long-term nursing facilities or preparing our house to accommodate a wheelchair.  Instead, we were planning for a full recovery at home.  Before our very eyes, we watched as Ben fought his way from the hospital bed to standing on his own two feet and walking down the hallway of the hospital....just two weeks following the day our family began discussing his burial.

Today, what wounds that once carved through his side and neck have been replaced with scars.  The face that once sat still and lifeless is now resurrected.  Air once again flows freely into his lungs and vitality has finally been restored to his spirit.  Over the past several months Ben has learned how to paddle board, started his final year of high school, and recently took on a new role as a volunteer at a local community center.  He is happier than ever.  In May, I was personally blessed with the chance to dance with Ben at my wedding....something that once seemed unthinkable.  Time has become the most precious commodity for my family - and every moment that we get with our Ben is counted as a gift.

We all have scars.  Some of us have more than others.  They seem to whisper secrets from our personal histories, telling stories of past battles and old wounds.  Most of our fleshly wounds heal, leaving nothing behind but a scar.  But some of them don't.  Some wounds remain with us no matter where we go.  And although the cut may be long gone - the pain of that wound still lingers.  As difficult as that pain may be - dare I say that sometimes maybe, just maybe, that pain is necessary?  Inevitably, there are times in life when we find ourselves in the worst case scenario.  Our bodies break down.  Our anatomy betrays us.  At times, our very hope for life is destroyed.  But through it all, we begin to see that the pain is necessary in order to bend and break us into a stronger shape than before.  I will always carry the pain from Ben's illness with me, but - I hope - it has turned me into something better.