Is hard for me to write today. After much thinking about I decided to go ahead and blog after all my running is a way for me to bring awareness, I owe it to all the parents that I connect that are dealing with blindness and visual impairment, like my online friend blind swan who is a mother of two children both who have the same condition as my son and she is dealing with the same things except is affecting both of her kids.
When there is a high there is a low, trail running have showed me that, Karl’s condition is progressing and everyday when I wake up I feel like I can hear a loud ticking sound, I am unable to stop it and it takes every ounce of my being tor try and find the strength to answer truly when he asks if I think he will be able to drive someday. Last week I dropped him at school and a teacher asked me to come in, for what I thought was a quick meeting about the school family dance or something like that, instead I was met with all of Karl’s teachers, they thought it might be better to talk to me in person instead of sending a note. They are all worried because he is struggling with the things he was OK a few moths ago, they order more equipment for him to be proactive but I needed to get him to the Children’s Hospital again to see where he is at, the truth is, is hard not to notice, I had made the appointment already, I have seen him climb imaginary stairs when he misjudge the distance of where they truly are. I have sense that things aren’t good, but I always want to think that I am just being over protective; talking to his teachers I realize that I am not. In the big spectrum he is still OK, he still have a lot of his vision left, but every time things change, it becomes apparent that the beast is very much alive.
Now there are a lot of emotions that one must go though, I feel embarrassed because this is not as serious as an illness where people must battle with their lives, but he is my son and it hurts tremendously. For mother’s day we all run the Forzani’s Mothers Day Run 5K together, when we got to the start line the sun was so strong and bright Karl had trouble walking so I tied my arm to his to guide him with motion as well as my voice, it worked, at about 1k he got into a rhythm and we managed to finish at 41 minutes, Hans, Lukas and Noah finish at 32 minutes. I was so proud of my kids, I felt a lot better, and I know that even though things will change, we are always going to find a way.
Things are much better now, it takes a lot of digging deep to put things into perspective, I would love to sit and cry and think, why? But that is not going to help me or my kids, is better to put my energy on trying to find a way to deal with situations in a positive way than to dwell out how unfair life is.
I believe we all have the lives we deserve. What I mean when I say that is not that we deserve divorces, sick kids, or unfulfilled jobs. What I mean is that we are all given challenges along the way, is how we choose to deal with them that separate us all; I am going to make sure that I take ownership of my actions moving forward. Is it hard? You betcha, as a single parent alone I feel that if my life was a movie, I will spend half of the movie on a raft in the middle of the ocean trying to get my kids and I to shore while paddling frantically with a spoon, when Karl was diagnosed well, I felt my spoon turned into a fork. But don’t feel sorry, Karl is doing fantastic, he is a bit sad when things changes, but he always manage to be happy and isn’t that what is all about? I want my kids to be happy. As for me, I find happiness as long as I know I am dealing with things in a positive way, what once intimidated me now is not a big deal, I am ready for my first 100 miler, and Brazil? I am only sorry is not happening sooner. I was invited to the luncheon for the CNIB, I am starting to put my son on the map as well as linking the business affluent community about what low vision and blindness is, standing there I vowed to help find a cure, I often hear kind words from people who I know that are not dealing with this , on how I have to be realistic, they haven’t found the cure to AIDS or cancer after all , but none of that matter, I am determine that my son will see the face of the woman he will fall in love, until he looses his sight completely that will be my focus. Is no accident that I chose ultrarunning to bring awareness to this, I remember reading about Brazil 135, the race takes place in an area is called “the path of faith”, the answer to my question on how was I going to deal with this in a positive way was never more obvious.