February 2019
Happy Friday friends!! Today in lieu of Friday Favorites I have an extra exciting treat… I am on Ashley’s Roses vlog! This sweet CFer has an interview series to help showcase different people from the CF community and I was blessed enough to be invited to speak on being a CF spouse!
It is my experience that CF is in a very unique season. The reality of this being an “adult” disease is demanding a new way to look at how to help patients and the resources these folks and their loved ones need. Adulthood with advanced schooling, careers, marriage, parenthood are all realities that are coming to fruition for CF patients, but learning how to cope, prepare and develop those aspects of their life is still a relatively new reality. This means the community of CF plays a HUGE role. These folks are each others’ guides, cheerleaders, truth tellers, and the world of social media has made this not only possible- but incredibly successful. I am in awe constantly of how this tribe is able to be there for each other and often from miles away! Making the uncertainties that may worry CF patients and their families not feel so isolating and scary.
Ashley has done an incredible job of supporting this community through the sharing of her story and helping to introduce a variety of different folks from the CF tribe to fellow patients or those interested in learning more about this disease. Her vlog and social media prescence is encouraging, honest, and full of beautiful faith testimonies. Her ability to share what she is experiencing comes across as raw and real- yet she is so poised and earnest you can tell she has taken the time and done the work to really process what she is sharing. As a person who rushes to tie everything in a big bow of “it is all OK”, Ashley has provided incredible perspective on the importance of building the space and time to process the experiences of CF. That sort of purposeful living contributes to why she is so earnest and how she is able to navigate this unique life with such grace and joy.
This interview was a privilege. Getting to know Ashley better, after meeting during the planning of 2018 CF MiniCon: Transplant, has been an honor. The opportunity to reflect on our journey and our marriage while navigating CF really gave me hope for the future, remembering we have come so far. And I feel incredible gratitude to use our story to contribute something to this special tribe.
Please check out the Vlog here and go ahead and give her a follow… I know you will enjoy all that great wisdom she is handing out. Oh and she has a lot of AWESOME insight on the CF movie “Five Feet Apart” that is come out in just a few weeks! Thanks to her encouragement our household is reading it too….
Ashley, the pleasure was all mine – thank you!!
Thank you so much for reading and remember to make it a great day!
Jackie
Have A Little Faith in We 