We are desperately hoping my son gets accepted to one of the three spots available for an event I can't fully disclose until it's finished, in Philly. The Baltimore location where we normally do our CF appointments is not participating, so we are making the trip to Philadelphia. We plan to make some fun on the Rocky steps and the Liberty bell, but each appointment will be 6-8 hours long, with blood work, and other assorted poking and prodding of my toddler. There's a requirement that he not have respiratory infections or be on antibiotics 28 days before day 1. If we don't get in, we have to wait until medication is approved by FDA which could be over a year away. My son needs this potentially life-lengthening drug to slow the progression of his terminal disease. The stakes are high; we are not attending any birthday parties for awhile.
A CF mom blogger I follow gave a metaphor that she went into "Roly-Poly" mode recently, where she said she did the equivalent of balling up and ignored anything that wasn't critical to maintain day-to-day. She was overwhelmed by the procedures her CF son was enduring. If she was in roly-poly mode for a few weeks, then this blog is evidence I've been in more of an Arctic Woolly Bear Moth mode. After three years, I'm finally ready to start writing things on a blog, much like that moth that spends around seven years to build up enough resources to finally pupate into the adult moth. Look them up, they're seriously incredible. I'm not quite sure if it's narrative, educational, or cathartic, but I have so many thoughts and things to say about CF to try and explain, so let's begin.
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