“Soon, people thought, soon Annabelle will run out of yarn.

But it turned out she didn’t.”

-Extra Yarn, by Mac Barnett and Jon Klassen

Scarlett has a fabulous book called Extra Yarn. It was a gift for her third birthday, and we still read it often. It’s about a little girl who finds a box of yarn, and no matter how much she knits, there is always yarn.

Now, I’m not going to get all “life is like a box of yarn” in my best Forrest Gump voice, but I do love this book. The little girl makes a colorful sweater for herself, and one for her dog, and when a neighborhood boy is mean, she tells him he’s just jealous. I’m not, he replies. But, as the author tells us, it turns out he was.

The little girl is told that her sweater is a distraction, and when she offers to make one for everyone, she’s told that it’s impossible. That she can’t. But, the book goes on to say, it turns out she can.

And in the end (do I have to write spoiler alert here? The book is like 22 pages long, so I think you’re ok to hear this) when a terrible archduke curses the little girl, yelling that she will never be happy again, it turns out she is.

I kept thinking about that book during ALS Awareness Month. In my small corner of Facebook, there was a flood of ALS information and stories throughout May. Some of it was really hard for me to watch. The hardest was a video about Trickett Fewell Wendler, showing her progression every month or so leading up to her death this March. I miss Trickett, and watching her like this hurt. There was also a news story depicting a day in the life of my spitfire friend Rebecca Hayden, who uses her eyes to communicate, and who eats through a tube. And a post from Jay Smith, about the parts of ALS that we don’t like to talk about or show, like the times at the dinner table when he chokes, and his little girls are scared.

It’s easy to see that those things are serious. But there are other, smaller things that ALS takes away, that alter what used to be just another day for me, being the mom, running the house. For example, someone might ask me where the cheese grater is, and I just laugh because my knowledge of our kitchen is roughly equal to my knowledge of string theory. The kitchen used to be the one room in the house that really felt like mine. But now, we could be cloning animals or building a robot inside the cabinets and I wouldn’t know. I pretend I’m still in charge of the house even though I have no idea how our washing machine works.

I do know where the wine glasses are.

I’ve spent a lot of time with the stories of other people who have ALS, and sometimes I wonder how they can possibly do it, day after day. And then I realize that people are wondering the same thing about me. It seems to particularly bother some people that I can’t use the bathroom alone (trust me, it bothers me, too). If you’re healthy and able, it seems impossible to imagine giving up the abilities that those of us with ALS have lost. But just like the assisted bathroom trips are not my whole life, the feeding tube meals are not Rebecca’s whole life, and the scary moments are just moments for Jay. They’re not everything.

There are times when I feel blissfully happy. These are often the times when I’m holding Scarlett, times when things feel normal, when I’m comfortable in the chair I barely ever get out of. When I’m not struggling to eat. If you don’t have ALS, you probably cannot fathom how you could ever live like this.

I wouldn’t have thought it possible myself, would have said you can’t keep going, or ever feel whole, when your body is slowly shutting down on you.

But it turns out you can.

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