I get asked quite often about how Project CF Spouse came to be. From the time that I met my husband, Ty, I was very involved in the CF community. I was an avid Great Strider and I spent countless hours advocating and raising awareness. It was such a huge thing for me to feel like I was doing something that was going to make a difference for him.
It wasn’t until after we got married that I started really looking for resources that would support me as a new CF wife. I had all this passion and drive to help make a difference in his health and his quality of life, but never really thought about what I might need as the wife of someone with a terminal illness. Even now, I struggle with this sometimes.
About a year after we got married, I was playing on the internet and by complete happenstance, I came across a blog that was written by a woman married to a man with CF. I think I sat there and read and then reread every post that she had published. I remember crying as I typed out an email to her. Her blog was exactly what I never really realized I was looking for. I had spent many hours digging around on the CF Foundation’s website looking for something that I could relate to as a wife, and it just wasn’t there. Historically, there hadn’t been a need for those kinds of resources to exist.
One sent email became the start of a sisterhood that would last over the next decade and half. She became the sounding board that I needed when insurance companies pushed me beyond my breaking point, and I was her support when her husband’s health began to decline. It was truly a life changing relationship for both of us.
It occurred to me one day that there had to be others who were looking for that very same type of relationship and support. I remember being so frustrated when I was worried about Ty after a particularly tricky admission. He had several admissions back-to-back and I had a friend who said something along the lines of “He’s always in the hospital.” I remember thinking how nice it would be to have someone who truly understood my life as a CF wife that I didn’t have to teach about CF. Thankfully, I had found that…. but I wanted to create that for others.
I’ve spent the last fifteen years building a network of spouses and partners who are just that…a network of support. These relationships are what led to the creation of Project CF Spouse. I have had countless others share similar stories of feeling overwhelmed with all the uncertainty but knowing that this was the life that they absolutely wanted. I wanted these people, my people, to have a place that they could turn to ask questions or yell or whatever they needed in that moment.
Thankfully, the CF Foundation announced their Impact Grants at just the right time. I had been working on several things and this opportunity would allow me to bring those to life!
Project CF Spouse has been my passion project from the moment the idea popped in my head. I love the work that we do…but more than that, I love the people. These people are more than my friends, they are my family. We have built a community that supports and nurtures in a way that can only be done by spouses and partners.
So, there’s a little bit of Project history! Stay tuned to see all of the amazing things that we have planned!!