Caiden was born August 29, 2003, as a healthy red-headed
baby. He was precious and full of smiles and laughter. His blue eyes would stop
you in your tracks, absolutely brilliant. We noticed that he would cry in the
evening and rarely sleep through the night. Our physician said he was colicky
which would make him irritable and cause him to cry. He also had seasonal
asthma like symptoms, which supported the irritability he demonstrated. But it
was mainly at night. He was a happy camper during the day.
At the age of 20 months, his daycare teacher noticed his
left eye would wander when he would look up at her. I noticed his depth perceptions
were being affected. He fell out of the sliding glass door and would fall for
no apparent reason. I handed him a
carrot and he wasn’t able to grab it from me, he kept reaching beyond it. We took Caiden back to the doctor, as we were
concerned with his vision changes. He sent Caiden to get a CT scan to see if he
had suffered any brain damage that would be causing the visual changes. The CT
scan revealed he had calcium looking things in his eyes. This probably meant
cancer tumors. We then went to a pediatric ophthalmologist to confirm the
diagnosis of bilateral retinoblastoma.
At the beginning of the following week, we met the ocular
oncologist who would be treating Caiden’s eyes and then the oncology team that
would be treating the cancer with systemic chemo. I can’t describe my emotions
with words, but thinking about that week, brings them back immediately. Caiden
underwent MRIs, PET scans, broviac port placement, sedated hearing tests, local
chemo treatment, and systemic chemo. He was only 21 months old and had to be
sedated with each procedure. It was the weekend of July 4th, 2005,
that he started his first round of chemo.
Every three weeks he underwent eye exams, localized chemo,
and then systemic chemo. We checked in Friday morning and were discharged by
Sunday afternoon. During those three weeks we would make trips back to the
hospital to have blood work checked. We had to give him shots to help his body
recover from the treatment. We joked he would make a good wrestler. It took 3
adults to give him his shot every day. If he could get his legs on your chest,
he would be able to lift you off of him.
If we only knew then what we know now.
He took chemo for 6 months, and then the month of December
was spent with 25 treatments of radiation. Again, requiring sedation with each
treatment. Then he had a break from
chemo for 6 months, but the eye exams revealed the cancer was coming back. We
were sent to San Francisco for experimental treatment. We spent a week there
and then 3 weeks later returned for his follow up. The new chemo was working,
so we could then go home and continues treatment. In 6 months, the chemo
stopped working, again. We were also told he was maxed out on the amount of
chemo he could have without increasing his risk of leukemia, higher than it
already was. He was watched by the ocular oncologist until he felt it was no
longer safe to keep his eyes. If the cancer got to the optic nerve, it would
have a one way ticket to the brain. So March 19th of 2007, Caiden
had his left eye enucleated. The physician continued to watch his right eye
until if fell to the same fate of the left eye. It was removed on September 24,
2007. He 4 years and one month old. After surgery, he wanted to know when he
would be able to take the patch off his eye and see again. We had to tell him,
that the light wasn’t coming back this time. I was so fearful that he would
live the rest of his life in darkness. Would he be mad at the world, mad at
God, mad at me? We told him God would
bless him with beautiful pictures in his mind that the rest of the world
couldn’t see, a gift just for him.
When he went for the follow up visit with ocular oncologist
after he removed his right eye, he asked Caiden if he understood why he had to
remove his eye. He asked Caiden to forgive him, for having to do that to him.
Caiden gave him a hug and said, “Its okay, I forgive you!” Not a dry eye in the house.
Caiden was treated in Grand Rapids, Michigan, where he was
born. But after kindergarten, we realized he needed special education. The
public schools where we lived were excellent, but unable to meet Caiden’s
needs. He is very smart, but very active and difficult to keep him focused. We
weren’t sure if his behaviors were from PTSD, ADHD, sensory integration, or
vision loss. We went on a road trip to check out the Indiana School for the
Blind and the Ohio State School for the Blind. Our intention was not to move,
but to bring back their ideas and then have our school district implement them. When we visited OSSB, we quickly realized, we
could not replicate the Braille emersion he would receive there. That trip was
March of 2009. In April I had a job and in May we had found a house to rent. We
were moving to Ohio.
Caiden has excelled at OSSB. That is where he was introduced
to wrestling. Having a blind child was
new to us, but being a physical therapist, my goal was not to let it limit him.
We got him in youth wrestling and would attend practice with him to be able to
walk him through what the other kids were observing the coach. This was a
challenge because neither of Caiden’s parents knew how to wrestle. Each year he
got a little better.
This year was his 4th year of youth wrestling. He
started wrestling in tournaments. People
began to take notice of him. I believe they were impressed with the fact that
he wrestles and he is blind. Wrestling is a very intense sport, and then try it
without seeing your opponent. Wrestlers,
coaches, and referees have all told Caiden to stick with it. He is a good
wrestler. But having vision is very much an advantage. But that didn’t stop Caiden.
Autism Awareness and Acceptance has recently become dear to
our hearts. Both Caiden and his older brother were diagnosed with Asperger’s Syndrome.
These kids are often brilliant, but have difficulty with socialization. I think
these kids are considered odd or weird. They are often out casted by the
popular cliché. With Autism being a spectrum disorder, every kid with autism is
unique. I think nonverbal kids might receive more grace because the
different-ability is obvious. But kids like my boys, are often teased because
of their social awkwardness. The difference is not obvious like a wheelchair,
walker, or assist from an aide. This end of the spectrum needs acceptance,
too.
Caiden received his arrow of light in April, from Cub
Scouts. Caiden also runs on the Delaware Special Olympics Track Team
and he swims on the SO swim team. He
plays piano, cello, and trumpet. He is one amazing kid and I am blessed to be
privileged to be his mama.
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