I had a meeting at Children's today with Drew's doctor and a few other folks about a transition project that they've been working on. Traditionally, transitions in CF related to going from pediatric to adult care. It has been recognized that the entire journey with CF is one of transition - from hi-calorie formula or real food, from being a toddler to going to school, from taking enzymes with applesauce to swallowing them whole, from mom and dad doing your treatments to taking responsibility for them yourself. But trying to identify what kids should know and know how to do when is a tough thing to figure out. And there is a fine line between simply parenting your child and taking pointers from your doctor on when your kid should know or know how to do certain things. So we're trying to find a way to ask people what they do and how they do it and how they feel about a whole number of different things. It was a great meeting today and hopefully the momentum keeps things moving in a positive direction.
Switching directions completely, I've been thinking a lot lately about friends and relationships and how this whole crazy CF thing has changed so much for us, even though I think we're really just still the same people. I get so much energy from the stuff I work on at Children's and the people I meet, both in person and through the different forms of social media that I use to share our story. I don't do any of what I do for recognition. I do it for Drew, honestly and truly. A couple of weeks ago someone had asked me what I would tell someone if they asked me about CF and didn't know anything about it. There's a lot I would tell you and honestly it would depend on the audience. I don't have one standard thing that I say. There's a lot that I want some people to know about Drew and about our family and what our lives are like on a daily, sometimes hourly, basis, and there are other people who I am comfortable just giving the $ .10 version to. Then there are friends or acquaintances or just perfect stranger who may know our story or who have heard from us and they might talk to us about CF or about us or whatever, pretending they know what we're going through or how we feel. Some people straight up don't care, or don't let us know that they care and I'm mostly okay with that because its not their job to care. I appreciate it when friends do care. I appreciate it when perfect strangers care.
I read an article the other day called "How to Talk to Someone With Cancer". The article should have been called How to Talk To Someone With a Chronic or Terminal Illness, because everything she said is applicable to our situation and I'm sure many others. There is something that she said that I most want to share with all of my family and friends and anyone else who knows us or knew us or wants to know us.
"You say you’re not good with hospitals, or you’re sensitive because of your tragic family history, or this is really inconvenient because you’re going through your own problems right now? Yeah. Suck it up. I recently had a now ex-friend say, after a year of near total silence, “I've been thinking of you so much.” And if I’d been a mind reader, that might have meant something.
It doesn't take big gestures. It takes less than a minute to send an email or a text or pick up the phone or walk over to someone in the supermarket and say, “How are you?” That’s all it takes to let someone know you’re still on her team. And that minute can be the difference between a miserable, scary day and feeling supported and reassured."
And that's all I have to say about that.