Happy Friday, from Romaniv Orphanage!

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.

Damages

But if you never try, you'll never know
Just what you're worth
Lights will guide you home
And ignite your bones
And I will try to fix you
ColdPlay, Fix You

Most of us live our lives like a bull in a china shop.  We try our hardest to keep it together.  We do everything we can to leave the shop without breaking everything around us.  But in the end, it's impossible for us to leave without damages.  After all, we're only human.  We damage ourselves.  We damage others.  And others damage us.  As we go through life, the cracks and chips seem to accumulate - leaving us with a shop full of damages.   For the disabled boys at Romaniv, the damages that they've sustained sometimes seems too  overwhelming to bear.  

  

I met a boy last week at Romaniv - someone I hadn't worked with before.  I was asked to do an OT evaluation with him, so I had Angela bring him to the new sensory room.  As she brought him into the room, Angela informed me that he is 18 years old, non-verbal, and has lived in Romaniv for the past 10 years of his life.  "He's usually by himself and never speaks", Angela said.

After timidly walking through the door, he took a few unstable steps and sank to the mat where he sat for the remainder of the evaluation.  He didn't say a word.  He didn't make a noise.  But looking around the room, he gave a brief, but very bright smile.  "In all of my time working here, I've never seen him smile!", said Angela.  

  

Almost immediately, he fixed his attention to something that he had never seen before....his own reflection in the mirror.  Attempting to peel his attention away, I called his name and tried to meet my eyes with his.  But it was no use.  Throughout most of the evaluation, he was lost in the unfamiliar sight of his own image.  

  

Needing more information about him, I asked Angela why he was brought to Romaniv.  "He had a traumatic brain injury when he was two years old, and never recovered.", she replied.  My heart sunk, knowing that his disability could have been overcome with early treatment and access to rehabilitative care.  His body suffered damaged so long ago, but he could have been repaired.

Wanting desperately to interact with him, I continued my unsuccessful attempts to get his attention.  Nearly giving up, I turned to my last resort - something that he rarely experiences in Romaniv.....human contact.  Situating myself directly in front of him, I put one arm around him and tickled him lightly under his chin with the other.  Immediately his eyes met mine.  It was as if the ice of his mind had melted away and he was free to connect with the world around him.  Looking at me, he beamed with a smile as brilliant as the sun.  

  

We're all damaged, it seems.  Some of us more than others.  We carry the damage with us.  But ultimately, it doesn't matter how damaged we are or how much damage we do.  What matters is what we do to fix what we can.   

Impact

"First with the head, then with the heart."
Bryce Courtenay, The Power of One

Impact.  We may not know it, but we experience it every single day of our lives.  In our jobs, in our relationships....we constantly strive to have an impact on someone or something outside of ourselves.  But what does it mean to have impact?  For the international organizations that I consult with, the goal is simple: to have a more effective and lasting impact in the lives of the people with disabilities that they serve.

Yet the more I live and work internationally, the more I find that having such an impact is easier said than done.  Over the past year, I have had to regularly wrestle with the fact that making a lasting impact is a process that requires good planning, enduring patience, and tenacious determination.

At Mission to Ukraine, we are currently planning for more growth and greater impact in the lives of Zhitomir's children and youth with disabilities.  After many days of meetings and discussions, we have created a strategic plan of action for making this impact a reality.  Following our changes in programming, one of our action steps for the Disability Department is to build a Model of Care.  By defining the scope of MTU's treatment, this Model of Care will serve as a fundamental roadmap for delivering effective and lasting rehabilitative care to Ukraine's children and youth with disabilities. 

In order to make a greater impact on the world, a collision must happen. Crash!  Bang!  Smash!  Sometimes, we must thrust ourselves into the heart of the problem with every ounce of strength we have so that the collision will strike a spark.  And, if we're lucky, that spark will set off a flame of impact that will last for a lifetime.

Sensation

The great art of life is sensation - to feel that we exist, even in pain.
Lord Byron

This past February while I was in Ukraine, I was told that one of Mission to Ukraine's US supporters, Helmer, Inc., wanted to organize a fundraising project for Romaniv Orphanage.  Knowing that many of the older boys at Romaniv receive greater amounts of attention from MTU and other volunteers, I suggested targeting the project towards something that could be beneficial for some of the more profoundly disabled boys who are often unable to attend group sessions.  What was concluded: To build a Sensory Room.

Finally, after nearly 7 months of planning, Romaniv's new Sensory Room is starting to take shape.  Last week my physical therapist colleague, Maxim, and I went to Romaniv to start the process.  We had mirrors to hang, floors to sweep, and soft mats to assemble.  There was a lot of work to be done.  

The Before Picture:  

While we were working, the boys began to grow curious about what was going on in the room.  They pointed and shouted from across the way, knowing that something new and exciting was being built just for them.  

In addition to the soft mats and ball pit - specialized lighting, soft music, and aromatherapy were added to the new Sensory Room in the hopes of creating a soothing and captivating sensory experience for the profoundly disabled boys.    

The After Picture:  

Used as a therapeutic approach by providing a multi-sensory experience, the focus of the room is to help Romaniv's profoundly disabled boys purposefully interact with their surroundings.  Although a few finishing touches have yet to be added, a new and innovative sensory experience eagerly awaits the boys of Romaniv.   

Thanks Helmer, Inc.!

Risk

And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom.

Anais Nin

As I write this, I am sitting in my room - the very same room that I always have when I come to Ukraine.  The past summer has been a whirlwind of travel, swiftly transforming into a personal crusade: one month in Ukraine, one month in Africa, and now another two months back in Ukraine - all in the hopes of helping organizations better serve children with disabilities.  As I march forward on my crusade - leaving Africa behind and pressing on once again to Ukraine - I find that bits and pieces of my past travels have been seared into my heart, creating scars that remind me why I am here in the first place.

During my trip to Kenya last month, one organization made such a mark in my mind: The Heshima Children's Center in Nairobi, Kenya.  It is no coincidence that the Heshima center was named after the Swahili word for "Dignity" - and it took only moments for me to discover that Heshima is at the forefront of the battle for Kenya's children with special needs.

In Kenya, children with disabilities are a distinctly marginalized population.  Drenched in shame and  often suspected of witchcraft, disabled children and their families are outcasts in every sense of the word.  Families become shaken to their core and the very act of living becomes a difficult struggle.  Not only are these children hidden away in homes - but reports have also shown that Kenya's disabled children are likely to experience debilitating forms of neglect including near-starvation, extreme deprivation, highly unhygienic living conditions, and complete abandonment (1).  In the war of disability rights, it seems that Kenya is losing.

But for places like Heshima Children's Center - the risk is worth the fight for bringing dignity to such children.  Walking onto the grounds of the center, I was immediately amazed at the bustle of activity.  New construction projects covered the grounds and buildings were being constructed in anticipation of reaching and serving more children with disabilities.  With a swift glance around, I noticed that many men were working hard under the afternoon sun.  Yet - to my astonishment - when I stopped to look again, I noticed that two of these workers were teenage boys with mental and physical disabilities.  

"Yes, they are our boys", said our guide.  "They have been with us for many years.  They are older now so we give them jobs to do.  Working make them happy - they can be just like all the other men...using their hands to bring growth to our organization."  I was astonished.  Here were two boys with disabilities - one with Cerebral Palsy, the other with an Intellectual Disability - living in the heart of Kenya...yet, both were able to fully participate in the construction project alongside able-bodied men.  Just when I thought the outcome looked bleak for Kenya, I was inspired by this beautiful picture of what services could and should be for the disabled.  

When it comes to fighting a battle, Risk can be a tricky thing.  Sometimes it motivates us to put everything on the line, because we can't stand to think of living with the alternative.  It can also deceive us into thinking that our choice may not be worth the fight. Yet the funny thing is: there is always a risk.  And we never find out just how far we can go until we push that risk to the brink.  Places such as Heshima Children's Center and their efforts toward creating dignifying opportunities for disabled children continue to remind me that the risk is well worth taking.

(1) Terre de Hommes. 2007. Hidden Shame: Violence against children with disabilities in East Africa. Retrieved September 10, 2012, from http://www2.ohchr.org/english/issues/women/docs/VAWHRC20/OtherEntities/TerreDesHommes.pdf