After several calls, Richard came into the room and told his Mom, "I know what you are working for." Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. With some trepidation, Mary asked, "What am I working for, Richard?" He answered, "You are working for 65 Roses." Mary was speechless. He could not see the tears running down Mary's cheeks as she stammered, "Yes Richard, I'm working for 65 Roses."
Thursday, May 16, 2013
37
Our CFF office used a quote by Andrea that was sent out via an email blast. They asked a question, "What's your CF dream?" and her response was …
"I want 37 to be JUST a number."
It just makes me sad to think that my child has that median life expectancy number dangling over her head, BUT...
THANKFULLY it does not keep her from doing anything and everything she wants to do. It doesn't make her stay at home all mopey and depressed. It doesn't make her come up with excuses for not doing something because she has CF. On the contrary…she lives a life any normal 16 year old should live. She rarely complains about CF related things and if anything it's made her less tolerable to the typical complaining many teenagers do at her age.
37 is the median life expectancy of someone who has CF. Does this mean that the day she turns 37 she'll die? HELL NO! It's a number the CFF has come up with by taking the average of all the 30,000 people who have CF and--I'm sure some other statistically analysis numbers--to come up with 37. Many live way past 37, thanks to modern medicine, rigorous treatments, exercise and eating well. However, many die before 37 and thus the number looms over our heads, over my child's head.
It's work to not let that looming number take control in our lives. Yes it's there, yes we think about it and NO we will not let it break us!
To try and make light of this number, here's some 37 numbers that are pretty cool…
There's always a #37 race car in Nascar… speeding around the track, while people cheer on. Nothing wrong with that.
How about driving along Interstate 37… it takes you from San Antonio to Corpus Christi where people have fun during Spring Break, enjoying the beach and nightlife. Nothing wrong with that.
NOW That's What I Call Music #37… songs by great artists that make you want to dance. Nothing wrong with that.
Nescafe Blend 37… Dark roasted coffee to a rich nuttiness with hints of toasted cereal and a smooth, malty caramel finish. Nothing wrong with that.
Right now 37 is the median age of life expectancy for someone who has CF, but that can change when we least expect it to 38, 40, 52, 68, 84, 90+! It WILL change because we are working hard at changing it and we'll continue working hard to make those higher numbers a reality in the life of a CFer! We will not stop fighting until we make CF stand for Cure Found!
Now, I'm thinking, it would be fun to drive down Interstate 37, in Nascar #37, listening to NOW #37, while sippin' on some Nescafe Blend 37. :)
Ya, I'm a dork!
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