I take lots of notes on my phone to remind me of the things that I’m planning to write about. But sometimes I think I overestimate my ability to understand my own shorthand. For example, I have a note for today that just says Relativity. That’s what the blog is supposed to be about, but I have no idea what it means or even if it’s actually the word that I wrote and not just some autocorrection.
Yep, just checking. I have nothing to say on that topic.
Some good things have happened lately, so maybe I should write about those things. I finished a New York Times Sunday crossword puzzle without cheating. I made it through the entire morning of no school without yelling at Scarlett or Otto. Wait, nope. I did yell at Otto, because he was eating all the plants in the backyard. He deserved it, so that doesn’t count.
And I won an award, which happened a little while ago, but I realize I haven’t really acknowledged it yet. It’s a leadership award from ALS TDI, the main organization that my family and I support since we feel that they share our sense of urgency around developing treatments and a cure for ALS. Read More>
“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. Read More>
When I was first diagnosed with ALS, I wasn’t sure I really wanted to talk to anyone else who had it. I was in shock, and I wanted to hold everything close to me, including my particular situation. But as time went on, and my disease progressed to the point where it was affecting many aspects of my life, I realized that I needed support from people who truly knew what I was going through. I tried to ask a few questions at ALS forums online, but I found the responses to be harsh and negative. I asked my doctor to introduce me to other patients who were young and who had kids. And when I wrote an essay on parenting in The New York Times, people with ALS reached out to me.
I struggle with the words to explain what it has been like to find people who are also experiencing this disease. Our lives—and even our symptoms—are different in many ways. We are spread out across the country. We wouldn’t know each other if not for ALS. But now we are going through this, apart-but-together, and it’s a source of comfort to know that. We can ask each other questions, some of us can talk on the phone, others send notes of support and encouragement. Sometimes we are angry and we can just be angry together. Read More>