I have special eyes, or at least medically important eyes. Every year a charity medical service called Angel Flight takes my mother and I to the National Institutes of Health in
The geneticist of these hospitals takes pictures of my eyes and prescribes an
experimental medical treatment called cysteamine eye drops. Washington, D.C.
I use these eye drops because I have crystals growing on the cornea of my eyes. This is what makes my eyes so special that doctors in
capital city want pictures of them. America
My body has a disease called cystinosis. Instead of processing protein, my cells hoard the protein which causes crystal growth on major body organs. So far only my kidneys, eyes and muscles have been affected.
When my mother and I go on these medical vacations, we stay at a place called The Children’s
Inn. The Children’s Inn is similar to Ronald McDonald House Charities. It is
a place for patients and their families to spend the days and nights needed
while going to important doctor visits at the nearby National Institutes of
There are playrooms filled with toys for kids, a teen room complete with ping pong table and shelves of books, and movies to borrow. On the main floor there is a piano. On either side of the main floor are two staircases leading to the second floor where kitchens, dining rooms and bedrooms are located.
On our first visit to the Children’s
I walked over to the piano and gently caressed the black and white keys. I
decided to sit on the hard, black bench and play a melody my youth group sang.
My heart was filled with the nervousness that comes from seeing a new doctor
and I blocked out the fear as I sang the words of the spiritual song “As the
Deer” in my head: As the deer panteth for water so my soul longeth after Thee,
You alone are my hearts desire and I long to worship You. You alone are my
strength my shield, to You alone may my Spirit yield, You alone are my hearts
desire and I long to worship Thee.
The song ended and I jumped at the sound of applause. I looked around and seeing no one, turned my head upward. Moms and dads and children were looking down at me from the circular banister. In my effort to bring comfort to myself, I had brought joy to other families facing medical decisions. I had never felt so close to God as I continued playing piano that afternoon, this time the popular love theme “My Heart Will Go On” from the movie Titanic.