About Ben
by Aquanetta (Ben's Mom)
Ben was born in Riverside
California on January 26th 1992, and a very healthy baby indeed.
He never
spent
any
time at the
hospital or doctors office, except for baby shots and oh how
we all know what that's like. I'm not able to remember the exact
dates, but sometime in February of 1992 I noticed that his right
eye had a peculiar glow. His eye looked similar to the glow
of a cats eye when caught in the head lights of a car. With
in three
days from the time I noticed his eye glowing, he woke up with
the right eye pupil white and at that moment I noticed he couldn't
see out of it. Two years old, he didn't cry or complain that
anything was hurting him, neither did he act as though his vision
was going. That day I took him into the pediatrician, and she
immediately sent me to see the ophthalmologist. The first thing
he said when he saw Ben's eyes was "There could be thirty
things to turn you pupils white, but we will be looking for tumors." I
believe that was the most frightening news I had ever heard.
That moment began the year long trial.
The results of the testing was Bilateral Retnoblastoma (cancer
in both eyes). I had never heard of cancer in the eyes. My father
died of colon cancer in 1977 that experience had me totally
frightened of cancer. One of the ironic things about Ben having
cancer is
that I named him after my father. For a moment I thought my
baby had cancer because I named him Ben, and that I was so afraid
of cancer, but I shook that thought quickly, my God is bigger
than that.
I was told that this disease is only found in infants and up
to the age of three. However, there was a case where a six year
old was diagnosed with it. His tumor was a very slow growing
one.
Ben's right eye was totally consumed by the cancer so it was
removed after the second month a chemo. After that experience,
we spent another eight months of chemo and then six weeks of
radiation to try and save the left eye. Results were a failure.
The doctors try to smooth things over and tell you, you can
try other alternative medicine, maybe go to Mexico to save his
vision.
That moment I realized that I had to make a life decision for
my child or lose his life. Of course, I would have him in any
condition to have him alive.
Ben awake from the surgery and said "Mom I can't see anymore,
I can't see anymore, Oh mom I can't see." Words of wisdom
spoken to me from my pastors wife, sister Devon, "Don't
let him feel your fears." After praying for strength and
receiving from God, I said, "Ben YES YOU CAN SEE" and
I took his little hands and put them on my face and said, "See
me, you can see me with your hands," next, I put my hand
to his nose and said, "Smell me, you can see me with your
nose," then I said, "Hear me, you can see me with your
ears, you can't use your eyes anymore, but you have your hands,
your nose, and your ears." I tell this one thing, Ben has
been seeing ever since.
The greatest gift in life is LOVE. What love is this for a man
to lay down his life for a friend. Ben's siblings automatically
took on roles and helped. His brother Derius, taught him how
to find the seems of his clothing and the heals on his socks
to put them on correctly. Isaiah who is Ben's younger brother
always described our surroundings to make sure Ben saw everything.
When we went shopping, I would let him feel on everything to
see what it was. If he knocked something over and people would
look, I'd just reply with, "Oh I am so sorry, he's blind." Of
course, with compassion they would say, "That's OK." This
was just a green light for me to tell Ben to continue looking
and I would continue shopping or what ever I was doing. When
I got ready to go I would hold my hand up and start snapping
my fingers and say, "OK Ben lets go" and he would
come from where ever he was and grab a hold to my back pocket.
Everywhere
we went I put his little hand in my back pocket to keep up with
me. I guess this was my way of being his sighted guide.
I believe Ben started clicking probably right away. He was playing
video games, riding bikes, skating, climbing trees, and doing
everything he always did as if he never lost his sight. I treated
him as though he could see and spoke visual. I don't know if
I was in denial, but I made sure he saw everything. I'd put
his had on the road and say, "look at this, the road is more
ruff and the side walk is smooth." You name it, I've probably
put his had on it. Ben says he practice to see how far his echo
would go so he'd echo down the middle of the street. I'd say
well how far did it go. He'd say "I don't know it just went
away." He practiced on hearing his environment without
echoing, so he could hear a trash can on the floor, almost anything
around
that's stationary. I say what ever works for him, do it. I'm
not in a blind persons shoe, so I'm not going to judge.
When doctor Ruben saw Ben playing his game boy, he was totally
amazed. He walked in the patient room and looked at Ben, walked
over to the computer desk and looked into his chart, walked
back over to Ben and looked in his eyes, then he look down to
see
if he was really playing the game. He finally look over at me
and said,"His eyes are nucleated." I said, "Oh
yes, he's blind." The doctor said, "How the heck does
he play video games" and I replied, "He does everything,
ride bikes, rollerblades, electric scooters, you name it, he
will try it." Totally blown away, he thought you have to
talk to other parents. People think it is the end of the world
when they lose their sight he tells them that they can still
lead a productive healthy life.
Since then, Ben was on the front page of the May 7th Sunday
paper of the Sacramento Bee and the Observer. From there he
was in
the July 24th issue of People Magazine where they sent him to
Sea World to swim with the Dolphins. Then we visited Los Angeles
and were on the Ellen Show, after wards we were in Chicago for
the Oprah. We also went to Japan and was on a talk show there
for the Japanese community. There is also a one hour documentary
of Ben's story coming in the early part of 2007 on The Learning
Channel. The dates will be announced.
He has been on numerous radio talk shows, we also had an article
in the Parenting Magazine. Ben has spoke to numerous classes
and Senior centers. One of the most important thing in his life
is to help someone else. I know God has a calling on his life
and it isn't for him, it is for others.
Ben started writing a Novel in the 4th grade, he writes at a
College level, and types about 60 wpm on a regular keyboard.
His novel is Science Fiction, and I think he as written at least
20 chapters. He also wants to invent video games. I believe
he has written it. This kid is so full of ideas and I encourage
him to pursue them all. The sky is the limits and you can accomplish
anything you set your mind to if you try. Don't stress on failure,
because from their only comes perfection. The only place from
rock bottom is up and failure is bottom.
Ben also loves Japan. He was already teaching himself Japanese,
so when our Japanese friends came over he showed them what he
had on the computer, songs, words and definitions. This blew
me away, I said, "Your teaching yourself Japanese too." He
wishes to pursue his College in Japan. So what I have done was
get him beginning Japanese on CD, this way he could learn it
easier. His school doesn't have anything for a blind person
right now. You see, I am his mother and I will try ever thing
in my
power to make sure that he doesn't miss out on anything in life.
One thing that I truly get back from Ben being blind is that
he truly sees people from within. When he hears someone say
that someone else is ugly, or anything negative towards someone
else.
He says, "That's whats wrong with sighted people, you all
look at one another and judge what you look like," I see
that statement being so true. The most powerful part of it is
that he can't judge from looks, only from spirit. This world
would be a much better place if we all couldn't see.