Category Archives: Progression

Phasing Out—A Guest Post by Carrey

Many thanks to Carrey Robinson Dewey for providing today’s guest post. Carrey first shared this on Facebook, and I thought it was so honest and enlightening. This is life with ALS: abilities—moments, really—are taken from us. Family life changes in ways we didn’t foresee and do not welcome.

It isn’t easy, and it requires us to shift our thinking every day so that we don’t drown in the reality of the disease. So that we can keep taking care of the people we love, even if we sometimes feel that we’re doing it from the sidelines.

PHASING OUT

Our morning routines have been nuts-o here at the Dewey household the past few years. In the morning, I wake up first, craft my edible art we call lunches, get the basic breakfast supplies out, cut fruit, empty the dishwasher, greet hubby when he comes downstairs, fix his collar, hand him breakfast, kiss him goodbye—finish getting lunches, backpacks, folders ready, find shoes, fix bedhead, stick a hair bow in, and a final “don’t forget to brush your teeth,” kiss them and put them on the bus routine!

That was all before ALS. Read More>

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Words to Live By

I love words. Some of them I love just for their sound: eviscerate, mercurial, novelty, snacks. Others I love for their meaning: ameliorate, ostensibly, ebullient, snacks. So from the start of Scarlett’s life, I talked to her using at least a few words from my old college-bound-student vocabulary book.

I also think it’s hilarious when really little kids use really big words, so when she was a year old and starting to talk a lot, I taught her a game of synonyms.

“What’s another word for careful?” I would ask, and she responded with “vigilant.” She was learning, and I was entertained. I’ll note here that I doubt she remembers this game or what the word vigilant actually means. We let it trail off when I couldn’t get her to pick up on daily=quotidian. That one might have been a bit of a stretch. But I’m telling this part of the story to illustrate how important the word vigilant was to us in those earlier days. I’m not sure it would even have occurred to me to say it to her, except that back then we had what is known in the parenting world as “a runner.” Read More>

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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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