This morning I spoke at CF Family Day in Lexington. I also spoke last year – since I've gotten a lot more comfortable, I think I did much better today than last year – and am so thankful I've been able to do so both years. I was super anxious and missed Alyssa all week thinking about doing this talk, but I'm glad that I ended up doing well in honor of her. She was so passionate about advocating for CF that I feel like I'm continuing her legacy in this way.
The talk today was a nice reminder of why I'm doing this project. Since I was talking to an audience of family members of people with CF (CF patients aren't allowed because of infection policy so yours truly was the only mutant present), I was able to not focus on the specifics of life with CF which aligned with my goal of this project. I focused on my goal of normalcy (and of course discussed why I dislike that word) and how I've coped with all of this for so long.
I try to avoid self-aggrandizement, but today's talk included me discussing some of my accomplishments. I don't view myself as a role model, but I can imagine how difficult it may be to not know the future of your child (I mean, I stress out about Duncan soooooo I already know I'm going to be a high-strung parent), so I hoped that my discussion of how I've embraced CF was some comfort to the family members and a reminder that it's possible to have some control over how we handle all of this.
I feel so motivated today. I feel like I'm getting better at speaking publicly and delving further into the social commentary around CF. I feel like Alyssa would've been so proud of me today and I'm thrilled with the speech that I gave (not self-aggrandizement, it's self-love!!) because I was pretty anxious about it all week.
To any CF families reading this post: the future is bright for CF medicine. It's hard to see that sometimes. Trust me, I know, I feel so sad that Lyss isn't here to see this, but I'm feeling more passionate than ever. I'm happy with how this project is going! People have given me fantastic feedback and I'm enjoying the challenge. In some ways, it's becoming a bit of a diary.
I'm feeling full of love today. Much love to all and thanks so much for being a part of my life.