I sat next to Zachary at a recent charity bingo event. At first, I didn't realize he was part of the family for whom the event was being held. He was focused on his Nintendo DS, pausing only occasionally to take a bite of what he described as
"really good pizza."
By all accounts, Zachary was a normal, eight year old boy and I assumed he was just like all the rest. However, as the evening unfolded into countless B-9s and G-53s, it became evident to me that Zachary was in fact, the brother of Casey; a three-year old boy suffering from Epidermolysis Bullosa (EB), a potentially fatal, genetic skin disease.
The mission of the evening was to raise enough funds for Casey's family to defray mounting costs for medical treatments and travel costs for his frequent visits to a Chicago hospital.
Casey too, was present. He wore bandages from his wrists to his shoulders with only his tiny, pink fingers exposed. His neck brace, though seemingly restrictive, did little to halt his curious exploration of the crowded cafeteria. I witnessed an incredible
tag-team effort by his loving parents and extended family, as they divided their energy between Casey's inquisitive wandering, the demands of their infant daughter, and the attention needed by Zachary and his bingo boards.
During some intense bingo competition, Zachary and I became friends.
I asked him about sports and school work, and he spoke of space and dinosaurs, and his ability to play the trombone. He seemed wiser than his years and his behavior was exemplary for a boy of his age.
He told me (more than once) how badly he wanted to win the telescope that sat nestled among more elaborate and expensive items on the prize table. He spoke of discovering new planets and stars. I imagine that to most of the night's participants, that telescope was nothing more than a ubiquitous shelf item found in most local toy stores.
To Zachary however, it was so much more.
When the games officially ended and we were allotted time to place our raffle tickets in the appropriated prize baskets, I placed all of mine in the one marked "Telescope", as did Zachary.
As the announcers prepared to call the names and ticket numbers of winners, Zachary and I crossed our fingers and legs in hopeful anticipation.
While waiting to exhale, I could think of nothing more than the unfairness of it all; how terribly cruel the world can be-
a world where a lively toddler who smiles and cheers at the very mention of pudding, must suffer a painful illness and regularly endure having his fragile limbs wrapped into restrictive cocoons.
It is the same cruel world that forces an eight year old boy to sacrifice the time and attention he so needs from his parents for the sake of his brother's unforgiving disease.
And this same world spares no sympathy for loving parents who are spread too thin emotionally, physically, and financially, to allow for grievance or self pity, which none would begrudge them.
So humbled by the presence of this family, I became keenly aware of the atrocity of my usual complaints.
After what seemed like an eternity, the announcer called the
ticket number for the telescope.
Sadly, neither Zachary nor I had the matching ticket. Though I expected at least some expression of disappointment, Zachary took it in stride. He immediately turned to his brother Casey and said "I hope YOU win the prize YOU want."
As a parent myself, I am all too familiar with the emotional meltdown that so often accompanies childhood disappointment.
I still marvel at Zachary's maturity and his ability to handle unexpected loss.
On his behalf however, I was unwilling to accept defeat.
After some discreet, gentle persuasion, the young man who won the telescope generously gave it to Zachary. He offered that he placed his ticket in that basket as an afterthought and was glad to give it to someone so deserving.
Zachary was shocked speechless by his kindness. His parents couldn't express enough gratitude for what he had done. Those of us who watched the scene unfold were positively giddy.
The event was a great success and generated more revenue than expected. Zachary's parents were humbled by such generosity. They carried Casey around to individually thank each of the event's organizers.
As Zachary departed with his family, he was smiling ear to ear, bearing the heavy weight of the boxed telescope by himself.
Though many offered, he refused assistance. His father proudly announced that Zachary regularly carries his own trombone to lessons.
The symbolism of visualizing this small boy bearing such a heavy burden was palpable.
As I drove home in silence that night, I knew I wasn't alone in my concern for Zachary and his family. I offered prayers for Casey's healing and for the strength his family would need in the weeks and months to come.
I wanted nothing more than for Zachary to discover that new planet; one where illness and uncertainty have no presence.
But the fact is, whether or not that new world exists, we live
in this world; one in which blessings and misfortunes are abundant in equal measure. And we, as humans share a responsibility with
our fellow humans to celebrate the joys and share the burdens.
How easily we can isolate ourselves into believing that charitable corporations can take the place of human interaction. Though supporting these philanthropic efforts is paramount to medical advancement, we must not lose sight of our communal responsibility.
Had a donation check been submitted to DebRA (Dystrophic Epidermolysis Bullosa Research Association) in lieu of hosting Bingo Night, I might have missed the opportunity to meet Zachary's incredible family. It is also unlikely that those funds would have directly met their immediate needs.
I am proud to be part of a community that embraces families like Zachary's.
Still today, I smile when I think of Zachary's expression as he received that telescope.
And though most of us left empty handed, our hearts were full
and at the same time, maybe even a little bit broken.
Isn't that what being human is all about?
And sometimes, life's greatest lessons come to us
in the most unusual ways.
This one just happens to be
about a boy and a telescope.
This is my truth;