I think it was around the second or third admission my husband had after we started dating, that I realized that my friends didn’t quite grasp the realities of dating someone with CF. Questions like “He’s in the hospital AGAIN?” were asked multiple times. It was hard for me. I didn’t want to burden him with my fears, as I knew he had his own with each admission and sickness. I had made lots of friends in the CF Community, mostly parents to kiddos with CF, but not any other spouses. I really wanted to find someone who I could vent my fears and frustrations to who understood them.
After a search on the Internet one day, I came across a blog owned by a CF Wife! I was elated!! After messaging back and forth, Amanda and I became fast friends! Shortly after connecting with her, I was given the names of another CF couple by a friend. I reached out to Kayse and much like with Amanda, a friendship formed fast!! That’s one thing that I have really seen with the CF community, we are very close!!
I began to connect with other wives and decided to make a group on Faceboook that could serve as a support group for all of us! It was a great place to ask questions, vent frustrations or just have support from someone who understood. The group grew and grew!!! It was great! What started with about four ladies, had grown to over one hundred members! Each of us were at different places with our journeys with CF and eventually emotions divided the group and it was dissolved.
After being a part of that group, I saw how important it was to have others who related to the CF Spouse-world. I spent a lot of time talking with others to see what the most important part of that original group had been and from there, began to lay the groundwork for what would become Project CF Spouse. In late 2016, Project CF Spouse, a non-profit organization, was established.
I wanted to be able to take the experiences gained from the amazing women I had met along my journey and grow that into an organization that was designed to provide education and resources, in addition to the support that was so valuable. I knew that there were lots of new people starting their journeys with their CF spouse (thanks to invaluable research and medications) and I wanted us seasoned spouses to be beacons of hope for them!
There is so much that I see this organization being able to do! Our amazing Board has put together some great goals for us and I look forward to working to bring those to fruition as well as continuing to look for ways to use this organization to help anyone who needs it!