My Baby

Dear Scarlett,
You got a hair chop this month. You've been asking if you can get your hair cut short, "LIKE A BOY. LIKE DADDY." And I pushed back because I don't think that would necessarily be the best look on you. So, we compromised (which, as an aside, is one of your new favorite words, as in "Come on, let me have another cookie. COMPROMISE.") You got several inches taken off of your curly locks, and now you go around telling people you have a hairstyle like a two-year-old. Every day, you ask me if it's still short.

There's been a lot of regression in your behavior since your cousin Jack was born, and I think wanting to look like you're two is part of that. When Jack throws food, you throw food. When Jack bangs on the table, you bang on the table. When Jack drools, you actually drool. And when Jack wears baby clothes--which he does all the time, because those are his clothes--guess what? You wear Jack's baby clothes.

In many ways, though, you're such a big girl. You're so good at occupying yourself with books and toys, making gigantic castles and towers with your MagnaTiles and wooden blocks. You love to play music on your keyboard. You dress yourself every morning, usually in amusing combinations of layers, which is very San Francisco of you.

I got a wheelchair on Monday, and I'm still adjusting to that fact. At first, I was very unhappy that I needed it, but then you and I took it outside and went around the block together. We rode in circles through our courtyard as fast as we could, laughing, and practically draining the battery in the process. You pointed out to me that it was the first time in a long time that we were outside alone together. You said that it was special. And it was.

Love,
Mom

New Year

Dear Scarlett,
Happy new year! We spent our holidays in Chicago and Anderson, Indiana, and got to see tons of family and friends. Christmas morning at Nonnie and Pops' house was a blast. You and Jack opened a gazillion presents: Magna-tiles, art paper, Legos, books, and--your favorite thing--footie pajamas. It's all you asked for every time we discussed Christmas. And they even had a detachable hood! Bonus. Although we already lost the hood. So, unbonus.

In Anderson, we had a beautiful memorial for Uncle John. There were photos and videos, fireworks (too loud for you), and Chinese lanterns (only some of which ended up setting fire to the trees in the backyard.) The police were not called, and everything ended harmoniously. We listened to Aerosmith, Joan Jett and Tom Petty. Uncle John would have loved it, and I am super annoyed that he wasn't there. You played with Meadow and Layla, two of Aunt Jamie's other nieces, and just generally loved being in a house packed with great people. (I think I counted that 18 of us were staying there at once.)

School started again today, which is why I'm able to sit down in front of the computer for the first time in what seems like weeks. I LOVE SCHOOL.

Dad and I didn't make any New Year's resolutions this year. I just want it to be a good year, full of work and play. I really mean that part about work, I've realized that I absolutely need projects to keep me busy, lest I go out of my mind sitting home alone every morning. Luckily, I have more than enough to stay occupied.

We're moving next month, which is beyond exciting. We're so ready to be in the new house, though it suddenly feels like there's a lot to do before the big day. For example, where exactly are we going to put all of our STUFF? The house is not huge, and to really set it up properly, we need the right kind of furniture, none of which we currently own. Lucky for you, this is not your problem, although, fair warning, you might find that some of your bigger toys have, um, disappeared, once we move. There are a lot of commas in that sentence.

I think 2013 was a better year than 2012, and I'm hoping 2014 is even better. It's funny to say that, because in some ways, things will definitely get harder. I need to get a wheelchair, and that's a psychological step I'm a bit nervous about. Physically, though, it will be really great, much like when I got Fiddlestick, my purple walker. But I'm looking forward to so many things this year. You will turn 4. Jack will turn 2. We'll enjoy the house, with its fire pit and ocean views. And I plan to do more writing, one of the things that makes me happiest.

I imagine you will continue to say and do hilarious things, which I also look forward to.

I love you,
Mom

Feistiness

Dear Scarlett,
On Sunday, the New York Times published an essay that I wrote about what it's like to be your Mom and to have ALS. For about two days, I felt like I was going to throw up whenever I thought about sharing our experience so widely. Every time there was a new comment on the piece, I got nervous. Would they be kind? Would they understand?

I'm happy to say that the comments turned out to be very interesting and respectful. I'm feeling much calmer about the whole thing, and I'm glad that I was able to further my--our--goal of raising awareness about ALS. And, as always, it's fun to write about you.

We've been having a lot of fun this month. You decorated gingerbread houses with some friends from school, which really means that you ate a bunch of candy that was intended for the house, and then went on an insane spree of dumping out all of your toy bins and running up and down the hall like a wild animal, only to collapse in a heap when it was time to clean up.

We joined another friend from school and her mom for a dance performance of The Velveteen Rabbit. You loved the first act, but by the second act, you decided you would rather roll on the floor behind our seats than pay attention to the stage. Is there a theme here? It's possible you're too young for some of these activities. But I still had a good time.

Your entire preschool class seems to be overly focused on superheroes this year. Dad and I are trying to get you to stop pointing at us and yelling "BAD GUY!" when you don't get what you want. You also informed me the other day for no reason that you were going to punch me in the face. I sent you to your room, and you marched off, announcing that I was no longer your friend AND I wasn't getting any Christmas presents. Later, we snuggled on the couch and read books.

You are very into Italian music and cartoons lately. Pimpa is a new favorite, and you love to sing and dance to Gira Gira Tondo. Today Aunt Shishie went with you to school for Grandparents and Special Friends Day. She got to do an art project with you, and when it was time to go, you didn't want her to leave. So she told you that you could have a sleepover at her house this week. Way to work the angle, sweetheart. I guess Shishie is the good guy today.

Love you,
Mom

La Scuola

Uncle Ha Ha

Dear Scarlett,
Your Uncle John, Dad's older brother, passed away yesterday. He was diagnosed with lymphoma a mere 2 months ago, and he had a very rare and aggressive form that acted fast. Uncle John was a strong, healthy guy, someone with seemingly unlimited energy and a constant supply of laughter. You called him Uncle Ha Ha, which began after one of his trips to San Francisco with Aunt Jamie. You and Uncle Ha Ha laughed all the time together. You made him so happy.

Uncle John knew a lot of things. He was a tool and die maker at General Motors, working in both Indiana and Michigan at different times. When Dad and I lived in Manhattan, our oven stopped working, which we only noticed once a very cold dinner had been sitting in there "cooking" for about 30 minutes. Dad called Uncle John, and after hearing a two sentence-description of the problem, Uncle John told us exactly how to fix it. This involved sticking toothpicks into tiny holes at the back of the oven. It worked right away.

When Dad was little, he shared a room with Uncle John. John was 16. Dad was 6. Dad claims that it was this early exposure to very loud Led Zeppelin that both formed him musically and wrecked his hearing. John didn't go directly to college, and it wasn't until his 40s that he went back and got his degree. I remember that Dad was so impressed and proud of him.

Uncle John had two daughters, your dear cousins Jessica and Danielle, and one grandson, Eathan. He and Aunt Jamie were together for more than 10 years, and married for 3. They were a wonderful couple, so well matched, and it was always clear how much they enjoyed their life together. They raised swans in their backyard, in a beautiful, big pond across from a nature reserve. Visiting them was always fun and relaxing, and we would take long walks along nearby trails when you were little. John was an expert at making bonfires. We would sit and roast marshmallows by the pond at night, and he would introduce some crazy new drink (Sambuca and espresso beans, once) that he had either created or discovered.

He and Aunt Jamie had a bird named Cookie, who drank coffee and wine, and ate human food, and hearing Uncle John talk to that bird always made me laugh. You still talk about Cookie Bird.

Your Uncle John was the perfect big brother for me. He welcomed me into the family long before Dad and I got married. He drove me crazy sometimes, as a good big brother should, and we argued about silly little things. But he was also attentive, inclusive and loving. When I got sick, John brought me strength and positivity. I tried to help him in the same way when he got sick.

My friend Ellie said that it's hard to know if a short battle with cancer is a good thing or a bad thing, and I think that's really true. I wouldn't have wanted Uncle John to be in pain any longer, but it is hard to imagine the world without him. I will miss his laugh, miss yelling at him to recycle all those wine bottles we used to go through, and miss the more recent conversations we had about what it is like to suddenly be sick when you used to be so healthy. They weren't depressing talks--we were able, I think, to encourage each other, to get some strength from our similar situations.

I will miss your Uncle Johnny so much. And I wish you'd gotten more time with him, too.

Love,
Mom

A Story You Told Me

Dear Scarlett,
A boy walks into a bike store and asks the doctor for a bike for his little sister.

"How old is she?" asks the bike doctor.

"Three," says the boy.

"And how old are you?" asks the bike doctor.

"I'm four," says the boy.

The doctor asks the boy what his sister's name is and the answer is "Despicable Me." The boy's name, it turns out, is "Strawberry Watermelon Pumpkin Apple Brownie Surprise."

"That sounds delicious," says the doctor.

He sells the boy a bike in his sister's favorite colors (red and pink) and a matching helmet. This costs $100 and the boy leaves with his change. But he quickly comes back to tell the bike doctor that his belly hurts.

"Why?" asks the doctor.

The little boy explains that his three-year-old baby sister is coming out of his belly, and she will be ready for her new bike. Out she pops and they take off riding.

The End.

Love,
Mom

Best Birthday Present Ever

Thanks Scarlett and Aunt Shishie!