Cf May Not Run My Life But It Has The Power To End It

I cant hold a job, its almost impossible for me. The amount of sick days would pile up so fast my boss would be dumbstruck, not to mention i cant walk very fast, some days i need oxygen, id need breaks to do nebulizer treatments and at times IV antibiotics, and the toll it would take on me would land me in the hospital more often than ever. Thankfully i can work from home : welcome to life as a babysitter.

My sister goes to school and her husband works his butt off day in and day out doing different construction and plumbing type jobs so i watch the baby and sometimes her older daughter as well when she gets home from school. Im lucky in the sense that i can still earn money and also that to go to work i dont even need to change out of my pjs (my living room doesnt really have a dress code). I make the baby breakfast and then we play till his snack time, then we play some more till he gets a bottle and goes down for a nap. Its not strenuous work and if i dont feel well i can easily relax on the sofa while he toddles around playing with his car and his legos. Its the perfect situation for a girl in my position.

That all sounds great right? I mean it is, but it also makes me incredibly sad. He loves the park, he loves the outdoors, and he loves being active. It breaks my heart at times that i cant be someone who can chase him through the field or hold him for long periods of time when he wants "up". Im stuck in a limbo that i cant get out of. My goal is to hold off transplant as long as i can but that also means more time of not being able to dance with my niece or have cartwheel competitions in the yard.

Looking into his eyes today while he drank his ba before nap time i was suddenly hit with the sad realization that i may not be here to see the inevitable trouble he'll cause when hes older. I may not be able to laugh at the ridiculous things he does that gets him in trouble but we secretly laugh about later. Who will my niece be? What kind of clubs will she join in High School, will i be able to watch her play softball years down the line?

Cystic Fibrosis doesnt run my life but it does hold the power to end it. I need a cure, i need some hope. The Cystic Fibrosis Foundation is dedicated to finding just that and to developing new medicines and treatments to help extend lives. The work they do is fueled by the donations they receive and every donation helps. This year like all the previous ones before it im going to load up my oxygen, take it slow, and walk 3 miles at the Great Strides walk just outside Chicago. Ive spent the last few months developing my team and raising money to help fund this amazing organization.

Ill include the link below for anyone who is interested in helping the cause and the search for a cure. Imagine the fear and sadness of wondering if youll get to see your family grow up, if youll be able to travel, to finish school. Cystic Fibrosis is a villain that always seems to escape, we need to catch it and stop it before any more lives are lost.

Rachels Great Strides Page