I like to write happy stories. Stories that have victorious
endings and are wrapped in a little package and delivered with a bow on
top. But it’s not all happy stories in this place. A few moments lately,
I’ve found myself standing in a daze in the middle of the ward looking
around at my patients. Thinking that there’s so much injustice in this
world. Injustice in this very place. WHY do they have tumors? WHY were
they born here with no access to healthcare. WHY are they SO poor. WHY
did they have to sell their only Zebu, or rice field to pay for their
daughter to get to the ship. WHY, WHY, WHY? I hate it, and I don’t know
how to process it.
There’s a 4-year-old little boy who lives with his mother and little
brother in bed D8. His brother, Doug is one of the cutest babies I’ve
ever seen. He has the perfect eyelashes, the most beautiful eyes, and
rarely ever cries. He’s the poster child African baby.
But I can’t say the same for Ozile.
Because Ozile has a neurofibroma. The whole right side of his face
was taken over by this incontrollable tumor. The tumor above his right
eye grew so large that it sagged down completely covering his eye. He
hasn’t seen out of that eye since. A second part of the tumor took over
his right cheek making it about double the size his cheek should be. His
face is disfigured. Do you know that even if you cut out a neurofibroma
that it will always grow back? That new tumors will likely grow in
other places? I know it, and it breaks my heart. Ozile had sugery about a
month ago. They took off the top part of his neurofibroma, but removing
the one on his cheek poses too much of a risk of damaging his facial
nerve. So it will stay. And the other will grow back. His eye is still
so swollen from chronic infection that I’ve never seen his right eye.
Does the eye still work? Will it ever see the light of day?
I love this little family. So much that it hurts.
I love Ozile. I love when he runs up to me and puts his arms up
asking me to pick him up. I love his uncontrollable laugh when I pick
out a pair of funny looking shorts for him to wear. I love his shrieks
of joy when he plays with the magnets on the cabinets. I love watching
him on Deck 7 try to pull his plastic motorcycle up the slide, and then
attempt to ride it down before I pick it up and put it back on the safe
ground. I love seeing his little mind spin as he tries to figure out how
the locks on the Xray table work. I don’t mind that I have to change
his gown 2-3 times on my shift because he can’t keep the drool from
running out his mouth. I love this little boy. But I HATE his
neurofibroma.
More than once when I’m caught it one of those moments of heartbreak
at Ozile’s situation yelling silently, “it’s not fair!!” I’ve asked,
“Jesus do you see him?” “Do you KNOW him?”
I was recently reminded of the name for God “El Roi”. It means “The
God who sees me”. The first time this name was used for God was by Hagar
in Genesis, when she had fled to the desert after becoming pregnant
with Abraham’s child and being mistreated by Sarah. There she was, all
alone in the desert, pregnant and used. Feeling like no one in the world
cared for her or knew her. Then the Lord appeared to her and she called
him “The God who sees me”. I grab on to this when I feel so much
despair for Ozile that I almost have to walk out of the ward. When I
think that he’ll never look like the other kids. When I think about how
he will be when he gets older. Will he still have that abandoned zeal
for life? Or will he be overcome by what his tumor is doing to his face?
Will his joy be diminished by his disfigurement? I don’t know how to
process this. I don’t know how to bear those thoughts of what his future
will be like.
But for now.
I know that my God, our God, is the God who sees. The God who sees me, The God who sees Ozile.
He is El Roi.
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