Living with a conscious knowledge that people are watching you and judging is a terrible and frustrating way to live. I made the decision, early in life, that I liked who I was and the hand I was dealt. Sometime around eighth or ninth grade, I stopped hiding my disease and making up lies about it and started accepting Cystic Fibrosis as a way of life. This was a shock to the people who thought they knew me best. "You take what every time you eat? What is a nebulizer? So that's why you miss school once in a while? Thickened mucus cells...eww." I received a lot of attention when I came out of the darkness. I began to prefer attention over secrecy. At my high school, I became the resident expert on diseases and the star of many a research paper.
People did not view me as "the sick kid;" people viewed me as the kid who is a little bit different. I learned that different is only bad if you hide and deny your differences. If you celebrate your differences, everyone involved becomes educated and closer to you. Now, I never miss an opportunity to explain my disorder and its perils. Today, every one of my students has an in-depth knowledge of Cystic Fibrosis. They do not view their teacher as weak or weird; they view their teacher as a human being, a role model, who accepts challenges instead of running from them.
A student approaches: "Mr. Gibbons, I made brownies in foods lab today; do you have pills with you, or should I put this in some tupperware so you can take it home?"
From the back of the room, a different student shouts, "Hey Mr. G., if you have pills, you can take a drink of my water since you drank all of your Dr. Pepper."
Does that sound like an individual viewed as a contagious freak? If so, then that's perfectly fine with me. I used to not want to be treated differently because I was afraid of what others would think. Now, I want people to ask questions, and the ones who don't, well, it's their loss.
Embrace what you have been given. Cystic Fibrosis has shaped who I am, and I would not trade this disease to be "healthy." Healthy is a funny word; doctors use that word as a gauge for happiness and sadness. If they say that I am healthy, then my family is happy and I should be too. If they say I'm unhealthy, then everyone is concerned and I become a patient. Whether I'm using antibiotics for my recent lung infection or I'm sprinting down the basketball court without a single cough, I am happy. I am happy because I was born with a disease, and I learned that even though I can't always control my health, I refuse to allow this little, life-threatening, genetic disorder control me.
~Scott
I am the mother of this fine young man. I am in tears as I am reading this. Being a mother, of a child with cystic fibrosis, I could actually start a blog of my own, with all the experiences I have gone through since Scott was diagnosed. As I was reading this, the only thing I cannot remember is Scott wanting to play football, but I am sure I was worried about the summer practices and talked him out of football. I tried to encourage him to do anything he wanted to do. I was at every baseball and basketball game he played. I am sure he was embarrassed as I jumped up and down when he got a hit or got the ball in the basket. As a parent, like Scott has said, don't treat your child like he is different. Treat them like any other child. There will always be worries, I won't lie about that. If you live life like you are going to loose your CF child, then you are going to loose a lot of living. You must cherish every moment. If you want to see the proudest mother on earth, you should of seen me when Scott graduated from college both times. Winter in Pennsylvania is always a challenge, but the day Scott graduated with his masters was a blizzard. I will never forget getting up that morning and praying that we would make it to the college for graduation. God was on my side because we made it there that day.
ReplyDeleteScott was my first born, and it took seven years for us to get this miracle. We did not know there was Cystic Fibrosis in our genetics, it was a total shock when he was diagnosed. Don't ever look at your child with Cystic Fibrosis and think why me, look at him and say why not me. God gave me this miracle and I hope I have given him a good life. Since Scott moved away from home, I miss him more than words can explain. I was the one that helped with calls to the pharmacy and even a few trips to Pittsburgh when his enzymes didn't come on time. Scott and I made it our day when he had clinic visits every three months. Our two hour trips to Pittsburgh were full of laughs and catching up on each others news. He even made me listen to Christmas music in June, now that is love. Now it is up to him, and he has done great on his own. Thank goodness for cell phones, I can get in touch with him when I am feeling like I just need to hear his voice, which is more often than he wants I am sure.
Mom
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