Today marked Eli’s appointment at the cystic fibrosis clinic. He sees his pulmonologist every three months.
Eli has developed strong opinions on just about everything. He says just a few words these days, but I’ll let the pictures show what one little boy had to say about his experience at the doctor’s office:
After I made it to D.C., I met up with my longtime friends Will and Megan, and their ‘lil baby Ms. El. Ms. El baby wasn’t too sure about me and my 24/7 desperation for hugs from an Eli-sized little person. I think I made headway by producing an itty stuffed buffalo and horse from the plains and spoiling her with snacks. My goodness me, is she ever CUTE! Oooh I can’t wait to see El baby again and make Eli her little playmate!
Megan went with me to the Cystic Fibrosis Foundation Leadership Conference in Bethesda. It was amazing to have a friend by my side. While there, we met country music duo Branch & Dean, celebrity ambassadors for the CF Foundation.
The duo performed a son, “The Dash,” for the crowd.
It’s a song written in honor of Theron Branch, Steve Branch’s son. Theron died in 2013, at 23, of cystic fibrosis.
Branch & Dean sing:
“Life goes by so fast/ And our story’s defined by how we spend that dash.”
I looked over at my conference companion. Tears were streaming down her face. I’d already spent mine on the plane over, or else we would have had two hot messes at the table. I patted Megan on the back and handed her a tissue. “It’s just so sad,” she said, wiping away her tears. When you step foot into the community that’s built up around this disease, there is so much hope. But there’s a lot of pain. Young death is still a part of things. It’s a punch to the gut. A reality check. It hurts.
About a month after the conference I met up with Branch & Dean again, at the annual Great Strides walk in OKC for the CF Foundation in early May.
My pal Brandy McDonnell at The Oklahoman wrote an *excellent* article about the country music duo, their song “The Dash,” and the connection to cystic fibrosis in advance of the event.
“My son was my hero. He taught me a lot. You know, this world’s not about you. It’s not about me. It’s about everybody else and trying to help everybody else. It’s not about what I need, it’s about what everybody else needs. I’d have to say that’s probably the biggest thing my son taught me,” said Steve Branch…
The song encourages people to live their lives purposefully, since none of us is guaranteed another day, minute or even breath.
“I tell people this all the time: We’re not talented enough to write that song. That was a gift, and it was meant to change people’s lives. And it already has. And it’s been in many ways a saving grace for us, too,” Scallan said in a phone call last week from Nashville, Tenn., where the duo are now based.
“‘The Dash’ is about life. It’s not a sad song at all. It’s something we all go through, and it’s inspirational — how are you gonna live your life? Music’s intended to change lives, and we just never knew when we wrote this one that we’d be changing our own life.”
I’d say more, but instead, I made a video. Listen to the country duo talk about “The Dash” and sing it.