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
Yesterday I had the opportunity to speak at VCU’s CF Family Education Day and it was kind of a crazy experience for Danny and I. In the fall I was asked about doing this event. March seemed so far away but for the first time in our lives we were actually making long term plans … More CF Life & We are Back….. Sigh
Hey there friends, hope you are enjoying a great Saturday! Today I will be at the CF Family Education Day at the VCU’s Children’s Hospital in Richmond, Virginia sharing our story. If you are interested in attending the event or hearing my presentation at 2:05 this afternoon, please use this link to join the event … More CF Family Education Day at VCU Children’s Hospital
Hey friends! So if you have been following along with us this week you know Danny had his surgery Monday, it is going well, and we are doing our best to live in HOPE by continuing to move life forward, despite this pretty big bump in the road. As Danny and I drove to Baltimore … More Children’s Organ Transplant Association
Hey guys and happy Monday! We are at Hopkins and Danny is preparing for the procedure. This post was supposed to go live this weekend….. but my bladder has decided with each medical need for Danny it wants a little attention too and I wound up with the start of another infection this weekend. My … More Getting Dan Some Lung Function
Last year at this time I was in a Daring Way Coaching Session with Jeanette Engle . It was one of the best things I have ever done and if you are local I would really recommend you check it out. One of the phrases we used a lot was that life is “brutaful”- brutal and … More Life is Brutaful
Have A Little Faith in We 