For a long time that question is what I wanted to name my blog. I felt it summed up this life we live. The realities of life and death that are part of our world on a pretty regular basis, yet the fact that what to wear to such life and death occasions are also “normal” to … More What do you wear to a transplant?
Last June Danny was crazy healthy. Lung function over 100%, working out all the time, so much energy- a whole new world. I was also discovering a lot of new: realizing that my life’s focus has been care giving and that everything else had been in auto pilot or path of least resistance, but now … More Health Update: A Different Kind of Challenge
Hi friends! So sorry my last CF Awareness post for this week is coming out today. I tried to finish it last night, but this week has kicked my butt and I was literally nodding off trying to massage my words. So a little Starbucks and bright Saturday morning and I have finished. I still … More Living with Cystic Fibrosis: The Future
Hey friends! So our CF adulting continues today with jobs. How do CFers pick a job? Should they work or should health be the full time job? What about your career while being a caregiver? This is one of the topics we get asked about most. There are so many different aspects, so many different … More Living with Cystic Fibrosis: Jobs
As I spend the final days of Cystic Fibrosis Awareness month on the topics related to being an adult with CF – today we are talking marriage. For most CFers’ lives they must constantly think of health first. It may not always shake down that way…. I know more than a few how have … More Living with Cystic Fibrosis: Marriage
Hey friends and happy Monday evening! It is the end of Memorial Day weekend and we are heading into the final few days of Cystic Fibrosis Awareness month. Because of living the CF life in some big ways currently, the month almost snuck away without giving me chance to share a few perspectives up on … More Living with Cystic Fibrosis: You Do You
Monday evening I sat down to write this update and it just wouldn’t come. It’s not uncommon when you like to write to have a little block, but usually if I just keep writing it will eventually un-block. That didn’t happen – it was a simple message… tell the health update, but instead I just … More Danny Health Update – A Path Forward!
As you all know Bishop O’Connell High School LINK holds a very special place in our hearts. The reasons vary and are many: what we experienced there, the friends we made there, the mentors we found there, the faith foundation we built there, the lessons we learned there, the quality students it develops there… we … More SUPERDANCE 2019
The biggest worry I have heard from the Cystic Fibrosis Community around the movie Five Fee Apart is a misrepresentation of CF life. If we are all being honest, there is no way one movie can portray all the different versions or complexities of this serious illness. That was always Danny and I’s perspective: just … More Five Feet Apart – The Movie
Happy Wednesday friends! Over here in our kneck of the woods things are a little all over the place and if I am being honest limbo stages like this can make my a-type feel a little unhinged. But this season of limbo is necessary to help move us into the future…. So instead of constantly … More Progress Over Perfection