Because I am a CF Mama

I am 50% genetically responsible for my two kids having Cystic Fibrosis and I am 100% responsible for my unconditional love for them.

I became a prized fighter against insurance companies, unnecessary testing, and ridiculous bureaucratic rules. I’ve played hooky with my kids on occasion while I ignored the school’s warnings of “an illegal absence.” I taught my kids to be responsible to work hard, and that CF would never, EVER, define them.

…because I am a CF Mama

I may not know what it’s like to HAVE cystic fibrosis but I certainly know what it’s like to LIVE with it.  I’ve heard the long raw cough that rudely took away the ending of a hearty laugh. I’ve spent countless hours and witnessed the incredible effort it takes just to START their day, while all I need is a strong cup of coffee and a much stronger stomach. I’ve handed off thousands of pills, syringes, and nebulizers while struggling with them to be 100% compliant. I’ve tasted the salt on their cheek as I’ve kissed them good-bye. I’ve smelled the putrid stench of feeding tube formulas, the sour smell of many strains of bacteria expelled from their lungs, or the sterilize stink of the all too familiar hospital.

…because I am a CF Mama

It was heartbreaking to explain to my child “Don’t move” as the nurse made their 4^th attempt at starting an IV, or convincing them that 3 weeks isn’t ‘that long’ to do IV antibiotic treatment over their already short summer vacation, or having a 25ft oxygen line is, in fact, long enough to make it to the bathroom…all while they told ME, “It’s okay, Mommy.”

 

I told my kids they can do anything regardless of CF.

I told inexperienced-fishing-Residents to take a hike.

I told myself everything will be ok

…Because I am a CF Mama

 

I’ve buried my child, because I’m a CF Mama

I allow pity hours, not days, because I am a CF Mama

I get up each morning

…Because I am a CF Mama

 

I am broken on the inside because I am a CF Mama

I am fierce on the outside because I am a CF Mama

I promise my soul that WILL NOT rest until I am no longer a CF Mama

…But a CF Mama “HAS-BEEN”

 

Who else wants to be a ‘has-been?”