Monthly Archives: October 2014

Getting Schooled

Rob and I have spent the past month attending elementary school open houses and tours, just like every other parent with a preschool age child in San Francisco. I know there are many, many places in this country where you don’t have to go to numerous open houses; submit your top ten PUBLIC school choices, desperately hoping to get one; or subject your children to “visits” (i.e. interviews) at private schools. I grew up in a town where the school you went to was just the closest to home, and that was all there was to the selection criteria.

But we want to live in this city, and so we play the school game. It’s actually going fine, I did my online research, made a list of schools to see, scheduled the appointments, and showed up. Easy. What I didn’t count on was the reaction I would have during our first tour, when the children were actually there, as children generally are when school is in session.

They roamed the halls in little packs, made noise in their music class, studied quietly at low, colorful tables. And then there were the walls covered with their work: drawings of families, poems entitled Where I Come From, and lists of classroom rules they had all devised together. Read More>

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Saturday Morning

I’m awake before anyone else, which is unusual. Rob and I typically wake up when the smurf down the hall runs in and dive-bombs our bed, demanding things like breakfast or our phones. But today, silence at 7:30am. The first thing I have to do is take my medicine, so I use the bed rail to roll myself over and grab for the little container. My hands shake slightly, but I’m able to open it and wrestle out a pill. Then I drop the whole thing. Pills everywhere. I feel bad for the noise, but that’s about it. I’m used to dropping things.

I have a system down for getting myself out of bed. It doesn’t always work, but today is a good day. First, I use my arms to push my legs out of bed. Then I grip the bed rail with one hand while pushing the rest of my body up with my other elbow. It’s slow going, but I’m sitting, and that’s the hardest part. From there, I push off once more on the bed rail and come to a standing position so that I can angle myself into my wheelchair.

Rolling over in bed makes me think of Scarlett as a baby, doing her tummy time and learning to flip her body around. She was so frustrated by her initial inability to do it, and she would work really hard, grunting and turning red. It’s a shock to realize that I don’t have the rolling ability of a three-month-old. But I console myself with the knowledge that my hair is SO much better than a baby’s. I mean, no contest. Read More>

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Blogger Girl

I’ve been blogging since 2007. That’s the year I started Deepish Thoughts, a site to keep friends and family up to date on my life, as well as on the bizarre and hilarious things Rob said. Which were many. When Scarlett was born in 2010, I shifted my attention to The Scarlett Letters, where I posted pictures and wrote to her about her life. And now, obviously, I’ve moved here to record my thoughts and experiences living with ALS.

I can’t keep up with two blogs, let alone three, so each time a new blog is introduced, an old one gets ignored. Or, let’s say it gets its wings, because that just sounds nicer. The blogs mark everything significant that has happened in my life over the course of more than seven years. Engagement, marriage, cross-country move, baby. The death of my beloved Papa, my dear brother-in-law, and several pets. It’s just a life, like any other. But I’m glad, now more than ever, that I chronicled it.

My story, with its unexpected trajectory, might make some people sad. But not me. I look back at those old posts and sometimes I just laugh. As I read about the traveling I’ve done, I find that I’m not mourning the loss of my abilities. Instead, I’m feeling insanely lucky to have seen so many different places. It appears that my past—at least the past I’ve chosen to document, and this is an important distinction—makes me happy. Though I’m not proud of all of it. Read More>

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