We’re in this together

“How long have we been on Trikafta?”

Morgan asked this the other night and I’m still smiling about it.

Fighting CF is not something I do alone. I know this. I have friends, family, and care providers who are deeply invested in this battle. But I’m never more cognizant of how CF affects my loved ones than I am in moments like this.

“How long have we been on Trikafta?”

That one word was a reminder that my health affects her every bit as much as it affects me. She doesn’t feel the physical symptoms of this disease, but it has shaped her life in more ways than I probably even realize.

My fight is her fight. She shares in the celebration of my triumphs and the heartache of my challenges. My future and hers are intricately entwined.

She’s right – this isn’t just about me. It’s about us. We’re in this together.

We’ve started this thing where, when we notice the subtle (or sometimes not-so-subtle) ways that my body and health are changing – like when I run up a dang hill or swim the entire length of a pool — we look at each other and simultaneously whisper, “Trikafta!”

I feel so fortunate that I’m able to take this drug. It’s not just changing my life, it’s changing hers as well. I still really struggle with the idea that so many don’t have access or won’t benefit from it. But I’m overwhelmed with gratitude every time I see this little girl’s face light up because she knows her mama is feeling good.

Mom and Morgan

We’ve officially been on Trikafta for 72 days.

And we’ve expressed our gratitude out loud each and every one of those days.

Originally posted January 27, 2020

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