February 2006
by Terry Kozloff
him for too long. He is a basketball player, world traveler, a college student with plans
of becoming a teacher and marry the love of his life. His fiancée, Isla, is a little more
than 5’ tall. Her neck must hurt much more than mine.
Josh came into our lives only one year ago. He responded to an ad I placed in our
local paper for an “assistant to a teenager in a wheelchair who lived an active life.”
While Ben is quite a bit more complicated than the ad revealed, I was interested in the
expression on any applicant’s face when they met him for the first time.
Of the ten applicants interviewed for the job, Josh was the only one that didn’t show the
slightest twitch of surprise or discomfort as I laid out to him the details of Ben's care. He
just kept saying, "Sounds good," and "That's cool."
He was hired.
Josh and Ben have become friends. They go swimming at the health club and
challenge any kids around to a game of basketball. They go bowling, out to lunch and
sometimes dinner at his house. They listen to music together, have gone to Disneyland
more than 500 miles away, and traveled to Las Vegas to take in the Strip and a
concert. They go boating on the lake, hang out at Josh’s house with his family, and on
Sunday’s they go to the Junior High School Gym and play more basketball.
Josh feeds Ben because he cannot feed himself, makes sure Ben gets all his meds,
and keeps him safe during his violent seizures. He gives Ben bubble baths, makes
sure his clothes are clean, changes his diapers, puts his contact lenses and hearing
aides in and out, and tucks him in bed at night. If Ben and his wheelchair don’t fit
through a doorway, Josh throws all 100 lbs of his friend over his shoulder and off they
go. Accessibility has never been an issue.
Josh is a very social person. He has lots of friends and I will always remember how he
cried when his friend with autism passed away. “He was just one of the guys and
always hung out with us,” said a somber Josh. “I will miss him.”
A month ago Josh was diagnosed with cancer. It’s in his lungs, on his heart, and in his
lymph nodes. The cancer was growing so fast and compromising major organs so
severely, it was almost too much. His liver quit functioning and one of his lungs
collapsed. He is now on ventilator, a feeding tube and receiving his second round of
chemotherapy.
But when my husband, Steve and I walk in the door of his room in the Intensive Care
Unit, he holds his hand out to hold mine. Next, he searches for Steve's hand to give it a
shake and with the other hand he does a "thumbs up."
In the 16 years since Ben was born, I have found myself excessively worrying about
what I must do to keep Ben safe and healthy. I didn’t sleep for the first 13 years of his
life; I feared he would quit breathing. I worried about his future, where he is going to
live, and his acceptance in a world that doesn’t always accept people like Ben.
But, I was never worried about Josh because he always appeared so strong, loving
every day life gave him, and so capable.
“What an interesting turn of events,” I said to Josh when he was first admitted to the
hospital. “Boy, it sure is,” he said.
Even in the hospital, in terrible pain, Josh sat up in his bed and poked Ben on the nose
like he has done for a year now and kept saying over and over “Hey you.” Ben just
grinned from ear to ear and so did Josh.
“Hey you,” is Josh language for “I love you, Ben.”
Today I understand that it has never been all about what Josh could do for Ben. That’s
what I thought a year ago.
It’s about what they could do for each other.
Since Josh has helped me to understand that worry and fear no longer have value in
my life, I wakeup every morning knowing Josh will survive this challenge -- he is strong,
he is young, he is loved deeply by his family, his fiancée, our family, and his friends.
What was once worry and fear, is now faith and hope.
