Many of you know that I along with some loyal friends and family will be leaving next week with the goal of climbing Mt Kilimanjaro. I have been asked many times why? For sometime I gave the standard response to Raise Money for Usher Syndrome Research which I have been doing for over a decade when I formed Hear See Hope Foundation. As this trip came closer on the calendar, I have had time to reflect the true motivation for this trip, my oldest son Conner. Conner was diagnosed with Usher Syndrome at a young age and I have watched his vision and hearing get worse year after year. This has never stopped him from staying positive but it does come with hidden pressures that he has placed on himself that until recently I didn't realize what it is really like to be Conner, from his perspective until I had the pleasure of reading an essay he wrote in his college English Class. Please take a second to read and see the inspiration and the reason I want to help raise money and awareness for my son Conner
Conner McKittrick
The Next Step
It was a bright sunny day on July 11th, 1999. The sky was clear, and the sun was giving such a warmth that one could fall asleep in. On that day, a child was born kicking and screaming into this world. The doctors and nurses congratulated the new parents on their baby boy. Unfortunately, the child heard none of it. The mother of the child then gave the child’s name,
“His name is Conner,” she says. The child still kicking and screaming heard none of it. It would be thirteen months until he would learn his name, or even hear the world. My name is Conner and I am that child.
When I was born, my parents did not know that I was deaf. They did not find out that there something off about me for almost a year. During that time, I was docile and sitting in the little bubble that was my world as I had perceived it, never realizing that something was missing. It had never occurred to me that the people were moving their lips for a reason. After a while, my parents figured out that I was deaf because I would not respond to any noise. They had surgery performed on me so that I could have a cochlear implant, which would allow me to hear the world around me.
The impact of that first year still affects me to this day. I don’t like to be in noisy areas for long and I have trouble speaking at times. There is no way to truly convey what it is like to hear absolutely nothing. If I had to describe the experience, I would say that it is like being inside a perfectly clear plastic ball. No matter how loud it is outside the ball no noise gets in I can feel the vibrations, and see the movement, but no sound. Just utter silence. That is the world I lived in for my first year of my life and every time I decide to take my cochlear implants off.
Time passed on, and another misfortune hit when I was five years old. I was not only completely deaf, but I was to lose my vision when I get older. The doctors had no real estimate on when I would lose my vision. I did not understand why I should be worried about what will happen in the future. After some more time passed, I started to realize just what I might lose, and what I’m not able to do. I remember when I used to just run without a care in the world and with all of the innocence of childhood. Now, I don’t run because I fear that if I do, I will trip and fall especially after several instances where that had already happened. So, I trained myself to always be careful when walking, always watching the ground for cracks, never able to enjoy my environment that I walk through. It was habits such as this that made me hate myself, blame myself for what I can’t do, and what I want to do. I was being eaten alive by my doubts, and it finally came to a point where I needed to take cane lessons. I had to learn to use a stick that could double as a barber shop pole to navigate blind, and I hated it. The cane to me was the symbol of my dependence on others, and my inability to do anything without aid.
I abhorred being deaf and losing my vision. I detested not being able to hear the teachers without some big clunky listening device that I need to give to them class after class, like some twisted game of hot potato. I loathed not being able to play sports with other kids running all around without a care in the world. I despised having to rely on others when I needed help. Finally, I felt hatred myself for my inability to do what I wanted to do. I regret not having any real friends as I grew up, always on the side, secretly wanting to play, but never being able to do so. I suppose that is why I took to reading the way I did. Reading to me was an escape, a way to not have to worry and just relax. To read about people who overcame overwhelming obstacles appealed to me greatly for I wanted to overcome obstacles myself. It wasn’t until later that I realized that I could overcome obstacles, that I could be my own hero like the ones from the stories that I have read about.
I can’t say when it was exactly when I stopped looking at my disability as a limitation. Now I choose to look at it as a way to gain a new perspective on the world and the good that I could do. My disability is the reason I want to become a geneticist, so I can help people who have genetic disorders like me, and possibly help alleviate the symptoms. I also want to be a geneticist to show my younger brother, who has the same disabilities that I do, that he can achieve his dreams if he wants to, and that his disability does not control him. I want him to be and do whatever it is that he desires. I want him to be able to run carefree without worry like I do now. I want him to be able to play sports with other kids, and I want him to live his life without worry about what he can’t do because he can’t see or hear. I want him to be able to choose his own path. I just hope he accepts it earlier then I did.
One thing that has stuck with me from reading books is a single question from the Stormlight Archives by Brandon, Sanderson that is asked “What is the most important step that a man can take?” When I first read this question, I thought nothing of it or its answer. The book gave an answer “The next step” is the most important step. I now realize just how true that is, and how that can be applied to my own life and many others. My next step is simple, I want to live, I want to truly live my life to the absolute fullest in anyway I can. I now look at the past as a lesson, and use it to look to the future. If I had a choice to go back in time and make it so that I would be born without any disabilities, I would not do so. Having this disability has shaped so much of who I am and will be a factor in who I will become and what I want to become. What will be the next step?
Conner is why I am climbing Kilimanjaro
Please take a moment to consider a donation, 100% of money raised goes directly to research. Please also take a moment to forward to anyone who can take a few minutes to learn about my son and let him know he is not alone. Thank You Todd McKittrick