Tuesday, August 27, 2013

A Heartfelt Moment


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 Washington, D.C. The geneticist of these hospitals takes pictures of my eyes and prescribes an experimental medical treatment called cysteamine eye drops.

     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 America’s capital city want pictures of them.

     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 Health.

     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 Inn, 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.

Monday, August 12, 2013

Poetry Discovered This Summer

Here are a few poems I have read this summer that I thoroughly enjoyed:

The Song of Wandering Aengus
by William Butler Yeats

I went out to the hazel wood,
Because a fire was in my head,
And cut and peeled a hazel wand,
And hooked a berry to a thread;
And when white moths were on the wing,
And moth-like stars were flickering out,
I dropped the berry in a stream
And caught a little silver trout.

When I had laid it on the floor
I went to blow the fire aflame,
But something rustled on the floor,
And someone called me by my name:
It had become a glimmering girl
With apple blossom in her hair
Who called me by my name and ran
And faded through the brightening air.

Though I am old with wandering
Through hollow lands and hilly lands,
I will find out where she has gone,
And kiss her lips and take her hands;
And walk among long dappled grass,
And pluck till time and times are done
The silver apples of the moon,
The golden apples of the sun.

Crazy Jane On The Day of Judgment
by William Butler Yeats

'Love is all
Unsatisfied
That cannot take the whole
Body and soul';
And that is what Jane said.

'Take the sour
If you take me,
I can scoff and lour
And scold for an hour'.
'That's certainly the case,' said he.

'Naked I lay,
The grass my bed;
Naked and hidden away,
That black day';
And that is what Jane said.

'What can be shown?
What true love be?
All could be known or shown
If Time were but gone,'
That's certainly the case,' said he.

Three sonnets from Sonnets to Orpheus
by Rainer Maria Rilke

Mirrors, no one yet has really described
what you are in your true nature.
You, as if filled with nothing but the holes
of a sieve, the intervals of time.

You, spendthrift, still giving yourself away to the empty
       ballroom--
when the dark dawn comes, as wide as forests,
and the chandelier goes, like a sixteen-point stag
through your impossible gateway.

Sometimes you are full of paintings.
A few seem to have entered you--
while others you sent shyly past.

But the loveliest girl will remain until,
there to her withheld cheeks,
Narcissus, clear and set free, shall force his way.
                      


Full, ripe apple, pear and banana,
gooseberry...all these speak
death and life in the mouth...I perceive...
Read it from a child's face

who tastes them. This comes from far away.
Is something slowly becoming nameless in your mouth?
Where once were words, discoveries flow,
startled and set free from the flesh of fruit.

Dare to say what you call Apple.
This sweetness, which first condenses,
is quietly put down into taste,

so as to become clear, thin and transparent.
ambiguous, sunny, earthy, familiar--:
oh, experience, feeling, joy--enormous!



Spring has come again. The earth
is like a child who has learned poems by heart,
many, oh many...by working long
and hard at her lessons, she has won the prize.

Her teacher was strict. We liked the white
in the beard of the old man.
Now, if we ask her to name the blues,
the greens: she can, she can!

Lucky, vacationing earth, play
now with the children. We try to catch you,
happy earth. The happiest will do it.

Oh, what her teacher has taught her--so much!
and everything that's printed in roots, and long,
difficult stems: she sings it, she sings!