May

May is Cystic Fibrosis awareness month.  It’s almost funny to say because I am aware of Cystic Fibrosis, all the time.

Almost every hour I am reminded of the monster living inside my son. Did he eat enough today? How are his stools looking? Did I clean his hands after he was outside? Does he still have that slight cough? Is it from TOBI or something else? Should I be worried?

I feel like it’s been one of those weeks in which CF has slapped me across the face. Reminding me that it’s always there, lurking in the shadows. Always there, trying to take over my son.

I think it’s because so many people in the CF community have been lost or are fighting hard for their lives these last couple weeks. We lost Emily Haager, a young woman in her 20’s who was the ambassador for Pipeline for a cure.

I’m reminded of how precious life is and how quickly things can change. Little Conner was taken back to the hospital for another round of IV’s. He was just released but is still not feeling well.

Skye, who is almost 2, is also back in the hospital. After their 7th try for an IV line, her mother asked them to stop. She will be there for a couple weeks, fighting for her life.

I am reminded of CF when I look at his vest, sitting next to our couch. I look at the number on it- 14. 14 is the number of hours Ben has spent vesting. Time, he spent, strapped to a machine. Time that should have been spent playing, running, eating. Any thing else.

I know all the other CF mommies can relate, even moms in general. The good part is that every time I am reminded of CF, I look at Ben and realize that he is here and healthy. Something that I will never take for granted.

I am reminded of hope. Hope for a cure.

Hope never abandons you, you abandon it.  ~George Weinberg