Hardly Strictly Anything

This weekend, Scarlett and I went to the Hardly Strictly Bluegrass Festival for our 4th year. The show—a free concert in Golden Gate Park—has been a San Francisco fixture for 13 years, made possible by underwriting from a generous music lover named Warren Hellman, who passed away in 2011, but made sure the festival funding continued.

Like other things we’ve done on an annual basis, this one made me think about all that has changed in our lives. HSB was Scarlett’s first concert, when she was 6 months old. That year, 2010, the three of us walked a mile from our house into the park, and the first act we saw was Emmylou Harris. A free concert brings a very large crowd, and it becomes overwhelming, which is why Rob is sleeping in this photo. But Scarlett loved watching all of the people. Plus, back then, we were nimble. When it was time to leave, we simply ducked out. Walked home.

HSB 2010

The next year, I was having trouble on my feet, but I wouldn’t miss the show. I drove us there on a Friday, parked as close as possible and pushed her in a stroller to the stage where M. Ward was performing. Afterwards, we met my brother-in-law, RC, who popped open a bottle of wine for the Chris Isaak session. Scarlett was in her running phase, and the two of us took turns racing through the crowd to retrieve her. When it was RC’s turn, I sat and thought about that Friends episode where Phoebe tells Chris Isaak his voice is a little girly. Read More>

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Just Another Day

Coffee. Coffee. CO-ffee, co-FFEE, coffeecoffeecoffeecoffeecoffee, COFFEE! COOOOOOFFFFFFEEEEEE.

That’s a song I wrote today. The tune doesn’t matter.

I haven’t had a cup of coffee since January, but this weekend there was a delicious cold-brewed jar of the stuff in a gift bag from my niece and…nephew-in-law?…waiting for us at the hotel. I tried some of it and it was good. Like, really good.

Now, I’m back home and I have that funny feeling that sometimes accompanies the end of a vacation. I’m happy to be back, but when Rob and Scarlett left this morning, I had a moment of sadness. We had a great trip together, and it turns out I’m just not sick of them yet. So I made coffee. And then I wrote my song. You have to do a kind of jazz hands thing at the end.

This blog is supposed to tell the story of what it’s like to live with ALS, but my inclination is often to gloss over some of the harder times in order to keep things light. Read More>

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Big Day

I am on a plane. Well, presently, I’m writing a blog at my dining room table. But by the time it’s posted, I’ll be up in the air, and I even bought a new iPad for the occasion. Technically, it is mine, but it’s already loaded with kids apps and once the plane takes off, I’ll be handing it—and a lollipop—over to Scarlett. Maybe this won’t make me sound like the greatest parent, but at this point, I have very few rules for air travel. She’s never allowed to kick the seat in front of her, but if she wants to watch Dora the Explorer for 3.5 hours while we cross the country, it’s fine by me. Pretty much anything that keeps her from rolling around on the floor and licking Enterovirus D68 off of her seatbelt is fine by me.

I am cautiously optimistic about the flight. Now that I’m wheelchair bound, people do make things easy for me. We skip lines and board first (although, is that really a perk? I always used to enjoy arriving at the last minute and spending as little time as possible in the airport and on the plane.)

But it hardly matters; the flight is just a means to an end. I am so looking forward to the purpose for the trip. My beautiful niece is getting married in Lexington, Kentucky. Rob will be giving her away, a place of honor that he is filling on behalf of his older brother, John, who passed away last year. Scarlett will be the flower girl. Read More>

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