Chapter 9 – Memories & Stories

“Playing the Cards Life has Dealt”

I was the poster child for the Cystic Fibrosis Foundation for 1985.  While poster child for the CFF (Cystic Fibrosis Foundation), I met Frank Deford (father of Alex Deford whom a movie was made about her life with CF), local celebrities and professional athletes.  I was interviewed by the local paper a few times, attended CFF fundraisers and much more.  There is a CF Fundraiser Ball every year and when I while poster child I was able to attend.  There I met many famous people and got a lot of attention.  It was a way to let people see what CF looks like in real life and not just the foundation that people were giving to.  The poster child/children showed the faces of CF and educated and spread awareness about CF.

While I was poster child I went to a photo shoot for the CFF.  We brought things from home like my rocking chair and toys to make the photo shoot fun.  On the way to the photo shoot the song “Puttin on the Ritz” came on and we sang it all the way there.  Mom and I didn’t care what music it was we would sing our little hearts out like we were on stage.

On days that I had a CF clinic appointment we had a thirty minute drive to the doctor.  It seemed that we always got the 8:00am appointments so that meant rush hour traffic.  Many times I would fall asleep on the way to the doctor.  If I woke up before we got there I knew how much longer we had to drive by what was on the side of the highway.  I often tried to ask my mom a question while she was driving.  Mom would tell me to be quite so she could think since she was driving in rush hour.  I had no idea that you had to think and drive, I was just a kid.

My mom had the type of job where she could be at the hospital with me when I was inpatient or for appointments.  When I was inpatient she would come to the hospital after work and stay the night.  She would stay until the doctors made their rounds in the morning and then head to work.  It worked for us.

When my mom was not available to take me to appointments my grandpa, mom’s father, would take me to appointments when needed.  When he took me to my appointments it was tradition to have lunch together after that.  I spent a lot of time with my grandparents, my mom’s parents, when I was younger.  If I was sick and couldn’t go to school, my mom would take me to their house and put me in bed with grandma.  My grandma worked nights for many years so she slept late into the morning.  It was from her that I learned my appreciation for sleep.  I am very thankful for my grandparents.  They have done a lot for me over the last 31 years.  Sometimes I feel like I need to have grandpa take me to my appointments just for old times’ sake.

When grandpa took me to my ENT (Ear, Nose and Throat) appointments he and my ENT doctor would talk golf the whole time while he was digging around in my head with the scope.  I think they enjoyed my appointments more than I did, not that I ever enjoyed them.  This went on for years until I could drive myself to appointments.

When I was around seven or eight years old I watched the movie “Alex.”  “Alex” is the story of Frank Deford’s daughter Alex that had CF.  My mom did not want me to watch it until I was old enough and also she wanted to be with me when I watched it.  One day when she was not at home I found the movie.  I watched the movie and cried.  When my mom got home she asked what was wrong and I confessed that I had watched the movie.  “Alex” was a sad movie.  My mom was sad for me that she was not there to comfort me while I watched it.  The movie showed the side of CF that I had yet to experience.

Camp M.I.T.I.O.G. was the greatest place for kids with disabilities and/or diseases in my area.  There are many CF related camps around the US.  Camp was a week-long sleep away camp during the summer.  I went for five or six summers.  The campers were always planning the next summer before camp was over.  There were also kids with Spina Bifida at camp at the same time we were.  I looked forward to this week all year.  It was nice to be around others that cough all the time and had to do breathing treatments like I did.  For once my normal was actually normal and I didn’t get stared at.  I met a lot of great people at camp.  Some had CF worse than I did and some did not have it as bad.  It was nice to see CF in the big picture and see what others had to go through.  I remember some that had a port-a-cath and I had never seen that before and had tons of questions.

The camp directors had to close camp for those with CF due to a newly discovered bug/germ that was discovered, pseudomonas B-cepacia.  People with CF are very susceptible to any and every germ especially those that other CF patients have.  Pseudomonas B-cepacia is a very tough bug to fight and we need to do anything to avoid getting it.  We were all very sad that camp had to stop.  Camp was the only place that I felt normal.  I am very grateful that I was able to experience being around others with CF.  It is sad that the CFF has put restrictions on things to limit the face to face time of CFers.  I believe with all my heart that being able to hang out with other CFers while growing up has helped me deal with my CF and to know that I am not a freak.

One of my favorite memories is when I was in the hospital, around age 13 or 14 years, I was loosing weight and not eating well.  I was tired of hospital food which is no big surprise.  The med student/resident doctors on my case were so concerned with me loosing weight that they were asking me what sounded good and what I would eat.  I said Chinese food thinking good luck with that one in a snow storm.  Next thing I know I had Chinese food in my room.  They had walked several blocks to get the food in a snow storm.  They were my favorite “duckling docs” from then on out.  By “duckling docs” I mean that they are the short white coat students that follow the big doc around like ducklings follow their mama duck.

My mom wrote a letter to the president of the medical school or dean of students or whoever it was that was in charge to let them know about the actions of these students.  They went above and beyond what they had to in order for me to eat.  I was a wonderful rebellious teenager with attitude and didn’t care what anyone wanted to do but they looked beyond that and saw that I was a kid that needed to gain weight.  It’s a good thing some people aren’t scared off by my “as matter of fact” kind of personality when I am not feeling my best.

 There are many more fun stories some of which are shared in my caringbridge page at www.caringbridge.org/visit/65rosescf

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