Dear Shannon, Tomorrow, June 19, 2020 officially ends my maternity leave with you. As you will come to know, your start to life was a journey and your arrival on earth was at quite an eventful time. Between the Global Pandemic that changed the landscape of the outside world we navigated, to your Daddy’s second … More Dear Shannon, It is the End of Maternity Leave
Two Friday’s ago I was waiting an update on Danny’s tracheotomy procedure. It had been decided that since the lungs looked good and working well, it was Dan’s ability to use them that was causing some dip in oxygen level, a trach would help him be consistent with breathing. Plus it would allow the removal … More Is Your Daughter’s Name Shannon?
Hi friends! Thank you all so much for keeping up with us on social media as we face transplant number 2. Danny was in patient when the call for lungs came through Sunday, May 10 around 3pm. Surgery was started at 5am on Monday, May 11 and as of today Danny is actively fighting through … More Double Lung Transplant During a Global Pandemic
My word for 2020 is joy and to think I chose it with a whole bunch of different reasons, and yet the way life has demanded a focus on joy for the world has been crazy. Who knew?? Courtesy of Blue Chair Blessings via Mix and Match Mama March 2020 In 2019, my word “hope” … More Joy for 2020
They had finished the transplant. The surgeon came out with a huge smile on his face and said things looked great. We had to wait a bit, but it wouldn’t be long until we could see Danny. Eventually we all suited up- myself, my parents, Dan’s parents and his cousin. We could finally see him … More National Marriage Week – We Celebrated a Little Different
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