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By Debbie Kay Hatley

In search of a new pair of eyeglasses, I entered a well known optical shop. It wasn’t very busy perhaps a handful of customers, one or two were being fitted with their new prescriptions.

Maria and Leo

Maria and Leo

I began browsing through the assortment of frames this shop had to offer. In the process of returning a set of frames, I heard a female voice from across a display rack say ” Excuse me, but can I ask you… what’s wrong with your hands?”

Suddenly all that emotion from deep inside me began to surface.
The years of those same dreaded questions asked in public places, making me feel different … set apart from others.
Some strangers would stare. Some of them thinking this condition might be contagious would make rude comments or gestures.
My feelings of hurt and embarrassment could make me reply with a hint of anger or sarcasm towards some. Most often however, it was easier to pretend I never heard their comments.
I felt somewhat relieved that on this day the store wasn’t overly crowded with customers whose prying eyes would make this more difficult for me to deal with.

Turning to reply to the female voice, my heart was immediately soften by the tender eyes which met my own. She must have noticed her question had caused me to feel uncomfortable, for the next few words from her were filled with unexpected kindness towards me.
“I’m sorry, I hope I didn’t embarrass you but I think you might have the same condition that my son was born with.”

If she didn’t before, she sure had my attention now, for most people (mistakenly) associated this condition with that of a burn.
“Leo (my son), was born with a rare skin disease called Epidermolysis Bullosa. It causes him to get huge blisters as well as much of his skin to tear away leaving large, raw areas of skin exposed.”

Debbie Kay and Leo's hands

Debbie Kay & Leon's hands

I felt a lump in my throat as I had just heard her give a very good description of my own skin disorder. Within minutes we were introduced, enjoying the company and the conversation of a rare topic.
Maria continued talking about her young son and she did so with much enthusiasm and pride for Leo.

Her eyes lit up when she spoke of Leo’s accomplishments, and tears fell as she shared with me the pain he went through. A short time later we had to end our conversation, but before I left we had exchanged phone numbers and a promise that we would get together very soon. Several weeks later My Mother accompanied me on a visit to Maria’s home. “Come here, mi hito,” Maria called to Leo as she tried to persuade him to come out of hiding and meet us but he appeared to be too shy. He would wander back to his room or hide behind the sofa wanting nothing to do with these strangers.

I sat relaxing on the sofa, listening to everyone talk.

“How old were you when you began to loose all your fingernails?” Maria asked, but before I could respond to her question I caught a glimpse of Leo. He had quietly come from behind the sofa where I was sitting and stopped very suddenly in front of me. He began glancing first at my hands, then his, back to mine again. Taking notice that his little hands looked very similar to that of mine. The lack of nails, a few blisters and the deep scarring were telltale signs that Leo and I had something in common.

Eric and Leo

Eric and Leo

Looking over at his mother and pointing one of his small fingers towards my hand Leo replied in a loud surprised tone.”yaya’s Mama, Yaya’s.” We all began laughing at the connection he’d made. Leo however, was still looking wide-eyed as though he’d just revealed a secret to everyone.
He became my little buddy that day when even in his young, childlike mind he knew we shared something very rare indeed.

A visit to her Doctor soon confirmed the fact that Maria was again pregnant. Her doctors advised her to terminate the pregnancy due to the fact that there was a 25% chance that this child might also have the same condition as Leo. Maria’s strong faith in God gave her courage to believe that a life though fragile and having countless limitations should be respected and cherished.
She soon gave birth to her second child (a son) who is EB free. She watched as her two sons’ grew.

Juggling her time between her job and the role of Mom. Maria gave great care to Leo, tending to his many wounds, draining blisters and the many bandage changes that had to be done. They even traveled to Germany seeking treatments for him. Always going forward, never quitting in the pursuit that eventually something could be found to benefit the health of her child.

On July 3, 1986, Maria and her small family were heading out on the highway to visit relatives for the up coming holiday celebration. In a head on car accident at the very young age of 22 Maria’s life was taken, leaving behind her husband and two young sons. Loosing her had left a huge void in so many lives.

It would be years before I saw Leo again, though on several occasions I would call him and his family to hear how he was doing. He had changed over the years (as I’m sure I have too). Still somewhat shy, very soft-spoken, he no longer was the little boy I remembered but a young man of 19.
His disease has progressed beyond my own. His feet are now encased due to the reoccurring scar tissue that has built up. Leo has had to have his esophagus removed and replaced with part of his colon. He is considering hand surgery that will release the digits of his hands, which are now fused.

Leo's family with Debbie kay

I realize now that the constant stares and comments from strangers had begun to effect me. I was developing a rather bitter and cynical attitude towards people. Some of who were rude, but most are just curious. Perhaps the pain we go through (if we allow it to) can create a heart that is tender and compassionate towards others. Helping those who might be going through similar circumstances, In fact, isn’t that most of what our journey is all about?

Pictured: Leo’s family with Debbie Kay

So, remember the next time you meet a stranger. You never know when you might create a lasting friendship or have an opportunity to converse with an angel unaware.
God bless you in your journey,

Debbie Kay Hatley
February 2, 2001

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