Apples for ALS

About a month ago, Rob, Scarlett, and I were headed over the Golden Gate Bridge in our glamorous silver mobility van. Alcatraz Island sat to our right, and city views rose behind us, but I always prefer to look left, out at the ocean and the world that never seems to end. I was singing along with my Napster playlist, which was streaming The Lumineers. I love to sing in the car, even though my voice is now much softer than it used to be, but my singing served another purpose as well, to regulate my breathing. We were headed to a friend’s apple farm in Sebastopol for the day, and although we had brought my BiPAP with us, I was hoping not to use it. I have no idea if the singing actually helps in any way, except perhaps to irritate Rob, which is good enough for me. Just kidding, he loves it when I sing (I tell myself regularly.)

The apple farm is owned and run by the family of one of Scarlett’s classmates. We visited for the first time last fall, a trip that was special in a lot of ways, but in particular because the house had previously been owned by a woman whose husband had ALS. That means the home is entirely accessible, and that’s not something we encounter very often.

There are 39 families in Scarlett’s first grade class, and everyone was invited up to the farm Read More>

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Regressions

Have you ever seen one of those lists of reasons why a toddler is having trouble going to sleep? I’m too lazy to look for one at the moment for direct quotes, but they include things like:

27. Toddler’s shirt is touching toddler.

42. Earth’s rotation is causing toddler to feel hungry, are there any bagels?

8. Toddler feels like dancing.

15. Toddler’s bed is scratching toddler. Toddler requires new bed immediately, yes yours will do just fine.

Those lists have always made me laugh, because having raised a toddler, I know much of this to be true. But I suddenly have a new appreciation for the plight of the small and somewhat helpless. When Rob puts me to bed at night, he settles me on my back, putting pillows under my elbows and one across my chest that my arms can wrap around. He fastens braces on my feet, and sets them against wedges that lean against a wooden chair which is kept in place by a leather ottoman. He stretches my legs and my arms and places my mask on my face. It’s a little more involved than our long ago life in Manhattan, when I would get up from the couch at bedtime and announce that I was going to bed. And then I would do that. Read More>

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Happy Birthday, Scarlett!

My little girl is seven years old today. When you are diagnosed with ALS, you understand that you have a 50% chance of dying within 2 to 5 years. Scarlett was two years old when I was diagnosed, and it was reasonable for me to believe that I might not make it to her seventh birthday.

But here I am.

She woke up to balloons and a Truly Me American Girl doll, the kind that looks like her: hair that Scarlett once described as “the color of chicken nuggets”, brown eyes, and a small smattering of freckles. There was a toy that looks like Otto, and some matching outfits for Scarlett and her doll, who she named “Scarlett”, although by the time she left for school, the doll’s name might have been “Elizabeth.” It was all a little confusing.

This morning was not like her second birthday, Read More>

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