Cystic Fibrosis Awareness Month

Just to breathe…
This shy kid is buried in a big hoodie and a big headphone and keeping 20 steps away. He’s too cool for us. Of course I bug him till he couldn’t help but crack a smile.

He eventually breaks into a child and gives me a hug. A real one with the squeeze.
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He needs just a few extra things. Like daily physio and a couple of weeks in a hospital. Oh, no no he isn’t rehabilitating from an injury. He needs them just to *breathe*.

Too often it’s a battle to get them though. You know how I know? Because on the topic of his pills, he grows incredibly clear and firm. His hood comes off. Suddenly in a confident pitch of a young man from behind that cool air of youthful nonchalance.

Will they take my needs seriously? He’s asked himself this too many times. Too many people have disappointed him. He’s had to grow up so fast. Just to secure his next breath.
I vividly and painful remember…that feeling of isolation and insignificance when people dismissed something that mattered to me. I wonder what it feels like when that something were essential for my next breath.
How alone. How terrifying.

Wouldn’t it be great if everyone knew what CF is? So all he had to say were “I have CF” and people will know it’s serious? And if kids can just be kids?

May is Cystic Fibrosis awareness month. Awareness helps.


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