It's that time of year when GREAT STRIDES is on my mind 95% of the day! Saturday, August 25 8:00 am can't come soon enough! This is a picture of this year's t-shirt.
Here comes the part where I ask you to make a donation or join our team...
From our GREAT STRIDES page (link at the bottom):
Mackenzie had her annual CF review at the end of June and it was a great one. Her lab results came back as normal, her pulmonary function test results improved, her nutrition was in the "green zone", and her lungs sounded clear!
When you hear this, or look at her, or know her positive attitude, it's easy to forget that she WORKS HARD to stay as healthy as she can - two hours of treatments a day when there are a million other teenage things she'd rather be doing, a crazy amount of meds (I'm thinking of taking her circus act of swallowing a giant handful of pills in one gulp on the road), a constant cough that makes people stare, always remembering to carry enzymes because she has to take them every time she eats...the list could go on, and she makes it seem effortless.
Even though she works hard, cystic fibrosis is always something that is with her...too often she coughs and can't stop or it's hard for her to breathe. Sometimes the nature of CF is that no matter how hard you work, it's two steps forward, one step back. "Breathe Easy" - In the CF community, when we lose someone to cystic fibrosis, that loss is almost always accompanied with the words "breathe easy"...and it breaks my heart every time. For so many reasons. Of course, the main reason being that we lost another brave CF patient to this horrible disease. But, also because, it is so sad to think that only in death can a CF patient truly "breathe easy". Recently, Mackenzie was having an emotional day - anyone who knows Mackenzie knows these are few and far between (but 100% okay and earned), I told her that I wish she could give her CF to me, and she would not even let me say it. She said she wishes no one would have to have it. I wish that, too.
Mackenzie turned 15 on July 21. When she was born the average median age of survival for someone born with cystic fibrosis was 31 (now it's late 30s). With advancement in research and the wonderful job Mackenzie does in taking care of herself - of course we don't think that this is her "middle age", it's a time when she is becoming a beautiful young adult with plans of college, teaching, art, having a family, being a friend - so even a passing thought of this being her "middle age" is unbearable. It's an average, but we have already lost too many others with cystic fibrosis along the way at all different ages - 3 years old, 7 years old, 8th grade, 18 years old, 35 years old (and so many, too many, others that we didn't know personally)...this reality is also unbearable.
As we always say, cystic fibrosis is only one of a million things that make Mackenzie, Mackenzie. But, it's also a part of the reason that she is brave, determined, responsible and has a loving heart for others. As I watch her becoming that beautiful young adult with plans of college, and teaching, and art...I know she will succeed at all of these things, but my Mommy heart can't help but wish she could spend less of her energy fighting CF and more of her energy focusing on the great things her future has in store for her.
There are AMAZING things happening in CF research, and we are so blessed by the generosity of our friends that have aided this research for the past 15 years. I hope one day soon I will not have to ask this question anymore, but for now...
Will you please join our team for Great Strides 2012 and help us raise money to find a cure for cystic fibrosis? Not just for Mackenzie but for everyone living with cystic fibrosis. So they can ALL "breathe easy", while LIVING!
www.cff.org/great_strides/jobe
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