"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.

Impossible

"Why, sometimes I've believed as many as six impossible things before breakfast."
Lewis Carroll, Alice in Wonderland

If you had told me two years ago, when I was graduating with my doctorate in occupational therapy, that in just two years I would be advocating for my profession in a foreign country where it doesn't exist - I would have looked you straight in the eye and said, "That's Impossible."

But yesterday, on a dreary Ukrainian morning, the age-old saying "Never Say Never" became a reality.  Invited by Dr. Bashek, the head doctor of Zhitomir's pediatric network and a well-respected medical figure in all of Ukraine, I was asked to speak to a group of leading pediatric neurologists in the region about Occupational Therapy.  There I was - standing in front of more than 60 of the top pediatric neurologists in the Zhitomir region, speaking on behalf of the Occupational Therapy profession and sharing how it can make a difference in the lives of the children with disabilities that they treat.  I also seized the opportunity to advertise for Mission to Ukraine's services and share about their heart for this work.  What an honor and privilege it was to have this opportunity!

In OT school we are taught that every human being - regardless of level of disability - deserves to live a life of individuality and dignity.  We are taught that by promoting and preserving their ability to participate in life's meaningful activities we can also preserve their human connection to the world.  This is what I wanted to nail into the hearts of these doctors.  And, hopefully, my presentation laid the foundation for change yet to come in the lives of Ukraine's children with disabilities.

Sometimes I have to stop and count the steps from where I am to where I started.  Two years ago, when I embarked upon my new career as an Occupational Therapist, I had no idea that I would be led to the country of Ukraine.  I had no idea that I would be working internationally to support organizations like Mission to Ukraine around the world....or that I would be living my dream of forging a future of equality and acceptance for children with disabilities on an international scale.  Yet, each step along the way has brought me to the place that I am now.  And as I look back at the footsteps of my past I become even more determined to keep moving forward, no matter how impossible it may seem.

Little Words

"...but a little word from the fingers of another fell into my hand that clutched at emptiness, and my heart leaped to the rapture of living."

Helen Keller

"Mmmmm - MMMMMmmmmmm MMMMmmmmmmm".  The faint sound of tuneless humming was all I could hear as I walked down the hallway to the office of Yuliya, Mission to Ukraine's leader in augmentative communication services.  "MMmmmmm - MMMMmmmmmmmm".  As I pushed open the door I was met by a bright-eyed boy named Misha who was excitedly flapping his hands and humming to his own mysterious and dissonant tune.  "Misha, we are going try something new", Yuliya said as he sat down at the desk.  Misha watched with anticipation as Yuliya brought out a  new device - something he had never seen before.  

Several weeks ago, Mission to Ukraine received a gracious donation to our department: an iPad 2 that could be used for therapeutic gains, namely for use as a communication device for children with communication difficulties.  With the help of a new application called GoTalk, the iPad transforms into a personalized interface with which children with disabilities can use to communicate with others.  Now, at the touch of a button, children - including those with Cerebral Palsy, Autism, developmental conditions, and profound mental disabilities - are able to communicate their thoughts, their desires, their pains, and their joys. 

Misha is one of our special children with Autism - a lifelong developmental disorder that affects the brain, specifically those areas that control social behaviors and communication skills.  While some children have mild forms of Autism, others like Misha live with severe autistic complications, including the complete inability to use spoken language.       But even though these children cannot speak, they are more clever than you think and are fully capable of contributing to their world if given the right tools.  Words have always eluded Misha, leaving him voiceless, with no way to communicate meaningfully with the world around him....until now.

As Misha's therapy session progressed with the use of the iPad 2, Misha's world seemed to open up before him.  He used the iPad to learn the names of different animals.  He used it to indicate to Yuliya that he wanted to blow bubbles, to play ball, and to take a break from work.  He used it to choose which toy he wanted to play with next.  Purpose and meaning were finally at his fingertips.   

I think one of the most universal human desires is to be understood.  We all strive for different ways to communicate with those around us - we all search for ways to connect with another.  And, finally, with the use of this new and exciting technology, we are able to communicate and connect with children just like Misha who have suffered in silence due to a disability that locks their lips and twists their tongues.  For the first time, their voices are being heard - and oh what a beautiful sound it is!

Spring Breeze

"What a life I lead in the winded breeze
What a life I lead in the spring"
Fleet Foxes, Sun Giant

A fundamental lesson I have learned during my time with Mission to Ukraine is that Ukrainians love to celebrate.  Yesterday, MTU put on a beautiful Spring Celebration for our young children with disabilities.  Just as the Spring breeze refreshes and restores the earth after a long cold winter, so did the laughter and the smiles fill the room with the energy and spirit of Spring.