Pricetags

"Freedom is never dear at any price.  It is the breath of life.  What would a man not pay for living?"

Mahatma Gandhi

"What do you do when a child comes up to you and starts crying?"  It was a curious question - one that I wasn't prepared to answer in the middle of a training meeting with Angela, the only nurse and teacher willing enough to work with the boys of Romaniv.  She went on, "I have found that, through the day, many of the boys cry without any reason at all - and I never know what to do."  

  

No answer that I could give to Angela would even begin to scratch the surface of the seemingly insurmountable issues that she is facing.  And, if we scratch too deep for the answer, we will find that the societal reality that children with disabilities around the world live with every day is more shocking and terrible than we think.    

  
In Ukraine, when a child under the age of 4 years is abandoned by their parents - with a disability or without - they are brought to a facility called a "baby house".  Some of the baby houses of Ukraine are well-kept and well-run, providing quality services and a nurturing environment.  But, unfortunately, such facilities are few and far between.  Too often, these facilities are grossly understaffed and overcrowded with room after room lined with cribs.  It is said that walking the halls of such facilities is eerily quiet.  Babies quickly learn not to cry - because, what's the use?  No one will come.  It becomes ingrained in their behavioral DNA that they are unwanted and worth nothing.    

As these babies grow older, this DNA of worthlessness begins to seep deeper into their hearts.  Children with disabilities are sent into a dizzying system of disability institutions at the age of just 4 years.  Evaluated by state officials, children are sent to live in institutions according to the level of disability they are given by the government.  Children with only mild disabilities are sent to facilities with teachers and relatively positive outcomes.  But those children who are deemed "unteachable" are herded into hidden places where the goal is simple: to keep them alive.   

It's hard to imagine such a measly price tag put on a human life....on children who are born with air in their lungs and blood in their veins.  Even the most profoundly disabled human beings have fingerprints and elbows.  Even those that are blind and bed-ridden have eyelashes and earlobes.  Yet the price put on their heads by their own people is meager.    

  
Sometimes I stop and turn my mind to Romaniv and to the boys who suddenly cry without reason.  And as I reflect on Angela's question, the answer stares straight back at me with such dutiful tenacity that I have nothing left to do but press on.  Press on to create support services that will invest in teaching these people the skills they need to be part of society.  Press on to build communities that recognize that people with disabilities have a value and merit on their price tags.


And as I answer this question for myself, I will ask you the same:


What price tag do you put on people with disabilities?

Better Things

"There are far, far better things ahead than any we leave behind."
C.S. Lewis

I remember it very clearly - just one year ago when I first came to Mission to Ukraine.  It was in the midst of a dark and bitter-cold winter when I spent 3 weeks trying to soak up all that I could of MTU's disability services. As I led trainings, had conversations, and observed classes - the ideas started flooding in. During my flight home, I began to sculpt a vision of how MTU could build upon what they already had established and grow to become a dynamic and powerful warrior for the rights of Ukraine's children with disabilities.

Now, over a year later, Mission to Ukraine is standing at a crossroads.  After a year of change, revision, and redesign within the programming structure - the time has come for MTU to make strategic decisions about their direction and their future.  The goal is simple: to serve more of Ukraine's children with disabilities with a full and effective battery of services and to integrate them into society.  Over the past year, this goal has been achieved through some of the following programs (just to name a few):

• The first Transition Program of its kind in Ukraine that prepares adolescents with disabilities for adulthood.

• A consultative role in a new initiative toward inclusive education for children with disabilities, thus eradicating Ukraine's current practice of segregation in schools.

• An Occupational Therapy lab, which is a profession that does not yet exist in the country of Ukraine.

• An Augmentative Communication Program that includes working with cutting-edge technology using an iPad.

• Implementation of a new functional skills-based strategy in working with orphaned boys with profound disabilities at Romaniv Orphanage - something that is unheard of for such children labeled as "unteachable".

• A Community Integration Initiative that seeks to expose society to the existence of people with disabilities, which is sending shock waves of changed mentality throughout the region.

  
The change that has already been cultivated in MTU is nothing short of breathtaking. Growth is happening before our very eyes. When looking at this compelling list of programs that have sprung up over the past year through MTU, I can only wonder at the possibilities for what is yet to come.   

  
I've heard it said that growth is a ceaseless process, one that should always be something we strive for.  Whether in our relationships, our professions, or our personal lives - we should continuously strive for growth.  That is where progress begins.  Strength is not found.  Strength is developed.  It is cultivated in precious moments such as these - when we stop for just a second and ask "Where am I going?".

My Favorite Day

"What day is it?"

"It's today," squeaked Piglet.

"My favorite day," said Pooh.

A.A. Milne, Winnie the Pooh

I have found lately that it is quite difficult explaining to people why I love my job so much.  Most people that I come across are unable to relate to what I do.  "Isn't it difficult always being on the road?", they ask.  "Don't you get depressed with the things you are seeing?" Of course, every job has its ups and downs, its perks and drawbacks.  Yes, it is difficult being away from home for long periods of time and the travel can be altogether draining.  And yes, a majority of the stories I hear every day are often drenched in sorrow and injustice.

 

But in the midst of the hard days of travel and the weary fight to restore hope for people with disabilities in Ukraine and around the world - some of my favorite days are the ones when I first return to Romaniv.

Sometimes I struggle to explain to others the electrifying jolt that comes over me when I descend the steps of Romaniv.  Or the warmth in my heart when I shake the eager hands of the boys.  But even if my clumsy words fail to describe the rapturing experience that comes over me - I will always carry these favorite days in my heart.  And that's what gets me through the rest.

"I don't think of all the misery, but of the beauty that still remains."

Anne Frank, The Diary of a Young Girl

The Story of a Mother

"But the distressed mother bent down over all the smallest plants, and heard within them how the human heart beat; and amongst millions she knew her child's."
Hans Christian Andersen, The Story of a Mother

In America, today is a special day for celebrating our mothers.  Flowers are sent.  Cards are delivered.  Smiles and well-wishes leap from the lips of children young and old on this day.  In light of this holiday and what it means, I want to introduce you to my mother - who has breathed inspiration into my heart since the day I was born.

Throughout the years I have heard stories of my mother's early life and the strength that she has cultivated through it.  She has never been one to be spared from the stormy seas of life - yet  she has always sailed straight into the center of each storm with her face to the wind.

At the age of 19, my mom's life changed forever with the sudden death of her father, whom she loved dearly.  Even today, it is clear that this event has shaped how she views and loves her own children and family.  With tenacity and strength, my mother tirelessly fights to maintain her relationships - because she knows how precious they really are.

Years later, after building a life and family, my mother gave birth to a disabled child, Ben, who has Down syndrome.    Though painful at first, Ben's birth quickly became a source of joy and pride in my mother's life.  Over the years I have watched in awe of the strength, sinew, and sacrifice that she put forth in nurturing Ben.  Little did she know those 20 years ago that the disabled baby boy she brought home and loved with every ounce of her heart would one day inspire a group of hurting and broken Ukrainian women that are struggling to raise their own children with disabilities.

 

For my most recent trip to Ukraine, I asked my mother to come to Ukraine for a week to spend time with the mothers of children with disabilities.  And, true to form, she generously agreed to give up her time and energy for the sake of counseling these women.  She led group discussions with the mothers, listened to them, met their children, and even led the first-ever Mission to Ukraine Parent Seminar in the hopes of stirring hope into their hearts.

They were broken women.   Women who had been scorned by society and abandoned by both friends and family.  They were women who were told that they were fools for not killing their disabled child at birth.  These women fought for the lives of their disabled children and knew resilience in its true form.  Watching my mom speak to them, it was as if she had known them all her life.  Although they live thousands of miles apart and spoke a different language - my mother was one of them - because she's a fighter too.

She doesn't know it - and I certainly don't tell her as much as I should - but my mother is my daily inspiration.  She has cared for me, supported me, and taught me how to be a better woman.  I can only hope that one day I will be half the mother that she has been for me.  She has helped to shape and mold me into who I am today, and for that I cannot thank her enough.

 

Happy Mother's Day, Mom!

We, Together, Make a Limb

Oh, adhere to me

For we are bound by symmetry

Whatever differences our lives have been

We, together, make a limb

Colin Meloy, Red Right Ankle

It is said that man, through the use of his hands, can change the state of his own life.  This is a universal principle that we see every day.  A woman uses her hands to knead the dough that feeds her children.  A farmer uses his hands to check the state of his crops growing in the field.  A violinist uses his hands to navigate the strings of his violin, infusing the room with the sweet aroma of music.  An infant child uses her hands to grasp for toys and explore  her world, helping her to grow and to learn.  We all use our hands to apply ourselves to tasks that bring motivation, meaning, and purpose to our lives.

But it's only when you are left standing in a crumbling room of orphaned boys with disabilities who have spent the better part of their childhood lost in a world with no opportunities to make use of their hands, that you begin to realize the power within our limbs. 

In March, during my previous trip to Ukraine, we fought hard to bring life to the hands and feet of the boys in the skills program.  Finger paint; play dough; water play; dried rice kernels; dried noodles; songs with motions; jumping games......we used everything we could to awaken the senses of their hands and feet.  One of our boys, Sergei, had been particularly distracted that day - unable to focus his attention for more than a few seconds.  But when it was his turn for the basin of rice, he hurriedly pulled off his socks and plunged his toes into the rice.  He wobbled at first, throwing off his balance.  As I grasped his arms to steady him, I watched his eyes grow wide.  He grew quiet and still for the first time that day - soaking in the feeling of grain between his toes.

And at the end of it all, we taught them to wash their hands and feet.  It was a terribly difficult arrangement - using a small basin of water and partially filling it with hot water from an electric kettle since there was no running hot water.  But as difficult as it was, it was worth it to watch each boy wildly eager for their turn to wash their filthy feet, as if their feet had never been washed before.

I often think about that day at Romaniv.  Peering down at their hands and feet, I couldn't help but look at my own hands and realize just how similar we really are.  Our hands mirror each other and our feet are knit together in the same way.  At that moment I realized that we are more connected than I thought - bonded by the human experience through the use of our hands.  I am no longer satisfied to say that man, through the use of his hands, can change the state of his own life.  I must go further than that.  I must say that I, through the use of my hands, must do all that I can to change the state of the world - one disabled child at a time.

Lost

Go and look behind the ranges,

Something lost behind the ranges.

Lost and waiting for you.

Go.

Rudyard Kipling, The Explorer

Yesterday I entered the gates of Romaniv orphanage for the last time before I head home.  It was a typical day at Romaniv: we came, we taught, we left.  But as I walked down the hall and out the door, it felt as though part of me was being left behind - anchored to the floor, waiting for my return.

You see - I came to Ukraine two months ago for one reason only: to continue building bridges of hope for children with disabilities who are neglected and forgotten.  I came to help the organization, Mission to Ukraine, to grow not only in numbers but in quality and effectiveness of service for these children.  I came to pour myself out in the hopes of triggering societal change by empowering children with disabilities and those that serve them.

But after two months of working with these orphans - boys that are lost in the shadows of Ukraine's countryside - I am beginning to see that it is not what I give them.  It is what they give me.  All this time I thought I was the one opening the door of opportunity.  But instead I am finding that each moment spent in the presence of these lost boys stirs hope within my own heart.  They teach me to slow down - to enjoy the simple things in life.   They teach me that there is joy even in the midst of brokenness and sorrow.  They teach me the true heart of Christ Jesus.

I am finally seeing that I am the one who is lost at times - lost in the blurred pace of life and endlessly searching for something just over the horizon of the moments yet to come.  But thanks to the lost boys of Romaniv, I have found myself.  And the lessons they are teaching me will forever be woven into the fabric of my life.