In the CF community, oftentimes the parents of CFers and adults with CF butt heads. Not always, but it happens.
I thrive on learning new information about Cystic Fibrosis, but I hate getting preached to. I don’t need someone on my back constantly saying, “this is how you need to handle this situation.” It’s hard enough tackling typical parenting issues, but add CF parenting issues on top of it? It can bring on pure drama between the mamas. Combine drama mamas with adults who have lived with this disease their entire life…not so fun sometimes…
Therefore, when I meet (often virtually) an adult with CF who listens, gives advice & yet doesn’t make me feel like it’s their way or the highway…I’m beyond thrilled.
There are several such individuals in my life, who I respect more than they know. They allow me to dive into the CF world of unknowns and only pull me up (often sputtering) when I get in over my head. They allow me to struggle, to learn, and to thrive without shaking their finger at me saying, “I told you I knew better than you,” aka “I told you so.”
None of them thrive on being a “CF celebrity.” Each person has created their own niche in this world, and each has proven to me that yes, CF is demanding and often a pain in the ass but that yes, life is more than Cystic Fibrosis.
These individuals are those that give me hope for Gavin’s future. They are not shy to admit their mistakes. They don’t stand on the top of a mountain shouting their successes (although sometimes I think they should, they well deserve the admiring attention). They are regular people, living (pretty) regular lives and just trying to make a difference in this little place called Earth.
So Josh, Tara, Stacey and Aimee please know that your advice, dedication, empathy, and strength does not go unnoticed. Please know that I look up to you and admire you. Please know I am well aware that without the failures & triumphs each of you has endured, that my little guys future would be bleak. Please know that I plan on each of you living to be 100 so that I never have to go a day without your knowledge…maybe a little selfish but too bad, I need each of you :)
Without people like you my life wouldn’t be where it is today, cautious but extremely optimistic :)