by Aquanetta (Ben's Mom)
Ben was born in Riverside
California on January 26th 1992, and a very healthy baby indeed.
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
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.