Friday, March 9, 2018

I'm Glad I Didn't Know

I've said it before, but I'll say it again.  Sometimes being part of the CF community is hard.  When Elias and I were dating and when we first got married, we didn't really know anyone else with CF.  Facebook groups weren't a thing as far as I know, at least they weren't popular if they existed at all and honestly his health was not in a place where either of us felt like we needed that kind of support.

The longer we were married, the more various things came up that others didn't quite understand.  I wanted to connect with CF wives that were on the same infertility journey we were on.  Then as his illness progress, I wanted to talk about what we were going through and ask questions to those who had been there or at least understood where we were coming from.

Thankfully, I found another CF wife through a CF FB group and I have since connected with several groups for spouses of CF patients or lung transplant patients.  In these groups we have some light hearted conversations, but we also talk about some really tough things.

Things I'm glad I didn't know were in my future when we were dating, engaged or newly married.

Maybe that sounds selfish or naive and more than likely I would have just thought that that would never happen to us because we were both convinced that he would have his original lungs until he was in his 60's or 70's because that is what he was told growing up.  Now however, I see things through different eyes.  I see couples who are young and engaged and just starting out on this CF journey together.  Many of them with spouses who are still quite healthy and hopefully will be for a long time, especially with some new promising drugs that have come out.  I see these couples I think that I am so glad that I didn't know what was ahead and that I didn't always have that in the back of my mind or hanging over my head.

Had I known what I know now, there are definitely things we would have done differently that may have preserved his health longer, however I would have also lived with far more fear and uncertainty. Today I read stories of lung transplant recipients that are well over 20 years out from transplant and doing great which gives me great hope.  Then I read stories of those who never even make it to 5 years and my mind begins to wonder where Elias will fall on that spectrum.  I think of when I finish my first step in school in 2 years and what we can do after that, but then in the same thought I wonder where his health will be.

We are not supposed to live in fear and for the most part, I don't anymore.  I can't however turn of the part of my brain that knows how quickly things can change.

Facebook groups are amazing for support and I have built some incredible relationships with women in these groups.  I am so thankful they exist, but they are also a double edged sword and sometimes they can take away our ability to live a life of naivety and blind hope/faith, appreciating the present and not worrying so much about the future.

I'm glad I have them, but I'm also glad I didn't know.