02 April 2014

How to say hello at a CF Conference

Today was the beginning of two Cystic Fibrosis conferences I have been invited attend again this year.

The first conference is called "March on the Hill" and is taking place in Washington DC.  I volunteer with the CF Foundation's Advocacy program so, tomorrow, the Foundation will be briefly training us and then sending us out to meet with lawmakers at the Capitol to discuss with them ways to make access to a cure easier.  Each time I meet with a Congressman or his congressional staff member during March on the Hill, I tell Bennett's story.  I will tell it again and again 4 or 5 times tomorrow. I

The second conference I will be attending this week is called the Volunteer Leadership Conference (or VLC).  This year, it's being held in Maryland.  I look forward to this conference as it gives me a chance to hear firsthand where we are with regards to medications that will help Bennett.  I plan to post as much as I can from the conference online for other CF families to see.

But, there is one thing I wanted to blog about tonight, something I've noticed...

There is a typical CF Conference greeting.

It goes like this:

Stranger: I'm so-and-so.  What's your name?
Me: I'm Breck.
Stranger: Where are you from?
Me: Texas, you?
Stranger:  Such-and-such state.  Do you have a child with CF?
Me: yes.
Stranger: How many with CF?
Me: 1 with CF and 2 without CF
Stranger: Boy or girl?
Me: Boy
Stranger: How old?
Me: He's 4.
Stranger: How is he doing?

This back and forth about name, location, how many children with CF, gender and ages happens all weekend long.  Sometimes, I just want to preemptively say: "Hi, I'm Breck: 1 with; 2 without; boy, age 4; doing well." :)

But the question that always gets me is when someone at these CF conferences asks, "how is he doing?"  On one level, we already know before we ask.

In fact, we typically glide over that question with a "oh, he's doing really well" or "he had a rough start but is doing well now."  Each person in that room knows there is more behind those words.  Asking "how is he doing" is another way of asking "how far as the disease progressed?"  And usually, we comfort the other person, as well as ourselves, by stating something hopeful ("it's hard but he's handled it like a champ.")

Shortly after this greeting, we typically move to normal conversation or we get stuck laughing about the unique situations we are each in while caring for someone with Cystic Fibrosis.

Tonight, some CF Mama friends of mine and I spoke about the challenges of traveling with all of our CF medications and equipment.  We laughed at the craziness involved.  We awed over a new breathing device out on the market.  And we shared tips on how to make life easier.

Although the conferences are why I am here, it is the conversations between the conference activities that I love most.  I am super thankful for "CF greetings" because they often later turn in to "CF friends."

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