Category Archives: Life

Auld Lang Syne

Dear 2014,

You’re on your way out, and we here at Speed4Sarah would just like to say thanks for the memories. You were the year we got our first wheelchair, and rode it at top speeds until the battery died; the year we moved into a new house; the year we got a better wheelchair with a stronger battery, and rode it into all of the walls; the year of the Ice Bucket Challenge. Evidently, you are also the year in which we started referring to ourselves in the third person.

You are the year our daughter started her final year of preschool, the year our niece got married, the year our brother-in-law lifted us into a Ferris Wheel and we rode to the top, looked across the sky and thought we are nothing without the people who love us. Then our daughter started rocking the car back and forth, and we were like, who brought this kid?

You are the year we started this website and began sharing our experiences with the world, even though it scared us. You are the year we raised over 100K for ALS. You are the year we traveled to Boston to meet some friends who are on the same ride we’re on, and the year we joined a study that we hope will one day change the trajectory of this disease. Read More>

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Being Quiet

I’m on Day 3 of a Bad Cold. It’s not really that bad, I suppose, but it’s sort of hard to tell when you mix it with ALS. In general, I don’t have a lot of coughing or nose-blowing strength, so when I’m stuffy and congested, things can be uncomfortable. My sore throat keeps me up at night, and that really highlights the fact that I can’t move around and adjust my body very well. A cold is manageable, but those of us with ALS fear getting sick like this. The flu could involve a hospital visit. Pneumonia could be fatal.

But, lucky me, it’s just this head cold. The nicest part is that with Rob on vacation and Scarlett out of school, I’ve just been able to lie in bed and nap all day. Floating in and out of consciousness, I find that I am surprisingly apathetic towards my situation. I was napping yesterday when they went to the park for a few hours, and I vaguely connected to the thought that I was literally stuck in bed, but I didn’t care. I just wanted to be still, to be alone, to be quiet.

I have more and more moments like these, even when I don’t have a cold. Read More>

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In the Spirit

“You have been my friend,” replied Charlotte. “That in itself is a tremendous thing. I wove my webs for you because I liked you. After all, what’s a life, anyway? We’re born, we live a little while, we die. A spider’s life can’t help being something of a mess, with all this trapping and eating flies. By helping you, perhaps I was trying to lift up my life a trifle. Heaven knows anyone’s life can stand a little of that.”
—Charlotte’s Web by E.B. White

Scarlett and I read Charlotte’s Web together over the course of a few days. I wasn’t sure she’d be into it, but she loved the story of Wilbur, the runty baby pig who was rescued and bottle-fed by a little farm girl, and how he then met a spider who became his best friend and saved his life.

Scarlett was also very interested towards the end of the book, when I burst into tears while reading about Charlotte’s death. She curled up in my lap when it was over, and I could see her trying to squeeze out a few tears, too. But then she said, “I want to go look at the Christmas presents.” Read More>

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