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Advice for parents of young kids with CF- From someone who has CF

Every now and then I get emails or phone calls from parents (usually who’s kids have gotten Recreation Grants from us) who have questions about various things having to do with Cystic Fibrosis (CF). Because I have CF and I’m an adult they must feel I have some insight into the situation. I'm definitely not an expert, but I decided to compile a list of some non-medical advice for parents of kids who have CF.

Climbing The Mountain

About 4 years ago on a Monday I ran a mile in record time, did over a 300 push-ups, and biked 10 miles. I was boxing and in peak physical condition, not missing a med, eating right, and sleeping.

Freedom With CF

About 17 years ago, a college friend came out of the closet about being gay to another friend and me. I remember at the time how honored I felt that he could feel safe enough and trust in me enough that he could reveal such a vulnerable side of himself that he had kept hidden for so long. I tried to imagine what it would be like to hide such a fundamental part of what is considered 'self'.  

Seeing Isn't Always Believing

Growing up, Cystic Fibrosis was never a big part of my life. I was hospitalized a few times during my first year when I was really sick, once when I was seven, then not again until I was nineteen. I didn’t pay much attention to it other than daily treatments.

Altered Perceptions

Being born with what has been labeled by society as a terminal illness (not my interpretation, their's...wait, who is they?) immediately alters your take on the world and everything occurring it. Please keep in mind this is my perception of the perceptions, take them with a grain of salt. Here are some examples:

Introducing Our 1000th Grant Recipient: Kiley Lyon

Imagine being 12 years of age and being told that you might not make your 18th birthday. This was the news given to my family and me when my parents, fed up with other doctors, finally took me to Iowa City. They knew something was wrong and despite insisting upon the possibility of Cystic Fibrosis with the local doctors, nobody had listened. 

Snacks for Adventuring

Hiking season is finally back in full swing here in Utah, and I couldn’t be more excited!

Hiking is my number one preferred way to work up a good sweat and put these lungs and legs of mine to work. In fact, hiking has become the best form of airway clearance for me. Plus, the views!

The Balancing Act of CF

Our worlds are ever-changing. Not just the chronically ill, but the human race as a whole. However, the chronically ill certainly have a few more pieces to play with than most. The constant battle is the balancing act.

The Five Gifts Cystic Fibrosis Has Given Me

This past Sunday was Mother’s Day.  Mine began like so many other days with a step out to our porch to check on a nearby robin’s nest.  As I sat watching three fluffy baby birdies eagerly await their mama’s breakfast delivery, I thought to myself, “This is the life.”  The smell of blueberry pancakes wafted out, and aside from the sporadic shouts from my six-year-old and three-year-old about who got to wield the whisk, all was calm.

13 things about CF you may not be aware of

May is one of my favorite months. It means that winter is mostly (and sometimes completely) over. A few days ago on a walk in the woods I noticed that the last patch of snow has finally melted and that the ferns are starting to uncurl their fuzzy heads. It’s also my mom’s birthday (today actually, happy birthday mom!), and mother’s day, and one of my best friend’s birthdays. These are the things I think of most when I think of May. It’s rare that in April I think, “Next month is CF Awareness month!” But maybe I should?


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