Friday, March 7, 2014

CF mom

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

I’ve played hooky with my kids on occasion to allow them some rest time and freedom” I taught my kids to be responsible, honest and 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 hear the long wheezy, junky cough that rudely took away the ending of a hearty laugh ot awakens from peaceful sleep,  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 stronger heart.  I’ve handed off thousands of pills, syringes, nebulizers, sinus rinses, Feedings while struggling with them to be 100% compliant. I’ve tasted the salt on their foreheads as I’ve kissed them good-bye. I’ve smell the horrid stench of feeding tube formulas, the sour smell of many strains of bacteria expelled from their lungs, gagged at the nasty mucus that they cough out of their lungs. 
…because I am a CF Mama

It is heartbreaking to explain to my child “Don’t move” as the nurse made their 4th attempt at starting an IV and accessing their port, checking their blood sugars, getting insulin shots or convincing them that 3 weeks isn’t ‘that long’ to do IV antibiotic treatment and breathing treatments and airway clearance 4 times a day over their already short summer vacation, or Christmas, thanksgiving and even their birthdays..... Because I'm a CF mama. 

I told my kids they can do anything regardless of CF.
Fishing, softball, basketball, snowboarding....whatever they put their minds to,
I tell myself everything will be ok
…Because I am a CF Mama

We spend some much time at doctor appointments that they feel like family
I give hours of treatments and Feedings, because I’m a CF Mama
I allow pity hours, not days, because I am a CF Mama
I get up each morning, stay up late each night
…Because I am a CF Mama

I am broken on the inside because I am a CF Mama
I am fierce and strong and smile 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!




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