“Playing the Cards Life has Dealt”
When school started it was fun for me but terrifying for my parents. I was the normal kid running, playing, and joking around. Every year my mom would have a conference with the teachers and the school nurse to inform them about CF and what to expect with me. I would also get up in front of my class and talk about CF and during that time then the kids were able to ask me questions. My hope was that they would ask all the silly questions then so that I would not be talked about later.
School was fun for me. I liked to learn and be around all the other kids. I was a social butterfly. I was unable to do some of the things that other children were able to do like going outside and playing if it was cold. I had to stay inside during recess if the temperature was below fifty-five degrees. I know my mom was doing this to protect me from getting sick but it was no fun to be the only kid sitting inside during recess. I did manage to go outside when the temperature was above fifty-five degrees but then I did not want to come inside.
I did have special academic testing at school due to the fact that I was absent a lot because of being sick. The testing was to make sure I was learning on the correct level and also so that I could have tutors when I was out of school for a long period of time. We also had to set up an IEP (Independent Education Plan) so that when I was sick and missed school I could still stay right in line with my class.
Out of elementary school and onto junior high. This was a new adventure; I did not have my safe pack of friends anymore. As it usually happens, you make new friends when you go to a new school. The junior high boys were a whole other issue. The easy part of the junior high school transition was that my friends knew that I had CF and it was normal to them but when new people found out it was hard. For instance when I was in seventh grade I liked a boy and he liked me and somehow he found out that I had CF. In front of everyone sitting around us in the lunch room he said, “You have a disease and you did not tell me.” My response; I touched him and said “yeah and now you got it!” My friends who knew what CF was were laughing at the whole situation. It is things like that which made me not want to tell people that I had CF. I would always rather people ask questions rather than assume they know what they are talking about when it comes to CF. The boy knew I was joking and we remained friends.
Well I made it out of seventh grade alive and it was onto the eighth grade. The summer before eighth grade I was at volleyball tryouts at the school (no, I did not make it) and I saw a boy sitting on the sidewalk waiting for his ride after football practice. We talked and exchanged numbers. After talking for a week or so we started going together, not that you go anywhere in junior high. After about a week or so of going together my mom told me that I needed to tell him that I have CF. So my mom took the reins and called his mom and told his mom that I had CF. Later, my then, boyfriend called to see what was going on and I explained it all to him and all he said was OK. I was amazed that he did not freak out.
My eighth grade year was the start of my lung problems. I was hospitalized a lot between eighth grade and twelfth grade graduation. I did what all the other kids did like going to parties, hang out with friends, football games, basketball games, and whatever else was going on when I was feeling good. I went through a period of time where I did not take care of myself like I was supposed to. I was not taking my enzymes like I was supposed to, so in turn I lost a lot of weight and had lots of gas and diarrhea. At one point I got down to ninety-three pounds which my ideal body weight was between on hundred fifteen and one hundred twenty pounds. My doctor told me that I would need a feeding tube if I did not put on weight. There are a few different kinds of feeding tubes Gastrostomy Tube (G-Tube) often called a button, Jejunostomy Tube (J-Tube), Nasogastric (NG-Tube) feeding tube but I didn’t want any of them. Feeding tubes are very common in people with CF due to the lack of ability to maintain weight and get the required nutrients. That scared me enough to put on some weight. I ate everything in sight and drank nutritional supplements and gained five pounds in a week. As you can tell I really did not want a feeding tube and was going to do whatever it took to not get one.
Moving onto high school; I did not like high school because if you were not thin, popular, presumed to be sleeping around and not the “in crowd” you were nothing. I have never liked clicks/groups, why can we not just be who we are and not what everyone else wants us to be. I still had my few friends who stuck it out with me. Since I was still dating the same guy from eighth grade, I hung around his friends which were the jocks. I was far from a jock but that is ok. I was still a good student. I liked school for the learning but people were cruel.
My senior year I went to school for one and a half weeks, got sick again and ended up back in the hospital. I was in and out of the hospital and on and off I.V.‘s my whole school year. I never went back to school except to graduate. I did graduate with straight A’s, which I am very proud of myself for that. I had tutors who came to the house and I taught myself. I am just glad that I made it through school. I did have a great friend who would skip the last hour or two of school and come hang out with me at home our senior year. There were many times that I wanted to quit going to school. Growing up is hard work. If you were not “cool” or in the “in crowd” you were nothing in high school and that is very hard. You have to be confident in whom you are as a teenager and that is hard to do when everyone around you is superficial and does whatever others want them to do. I thank God for my faithful friends who were always there for me and helped me feel “normal.”