I canceled all of my appointments for this morning, feeling too tired to deal with the real world and the people who live in it. It’s raining outside and Otto is pacing the floor. I spent an hour reading blog posts that I wrote to Scarlett in 2011 and 2012. They didn’t make me sad, but I did feel nostalgic for a time when she was a ferocious toddler and I was her complete mom. I know, I know. I’m still her complete mom, but that’s not what I mean. I mean the mom who moved, who drove, who carried her across the city, even as I began experiencing symptoms of ALS. I read blogs about her first few days, weeks, and months at preschool. When I knew I had ALS, but I was still so mobile that I saw no need to acknowledge it.
Right now my sister and her family are in New York, and when I facetimed her this morning, she immediately put the phone up to the street sign over her head: 23rd St. and 10th Ave. Where Rob and I used to live. They were going for lunch at our favorite tapas restaurant, a place we frequented when we lived in Chelsea. I miss New York. I miss those early days of Scarlett in San Francisco. Sometimes I wish I could go back for just one day and appreciate the use of my legs, the strength of my arms, my ability to be alone with my little girl, or to jog along the Hudson River, just to be in charge of my life. But in most ways, I don’t want to go backwards. This month has been busy, but fun. We went to a gingerbread house decorating party yesterday, and Scarlett has a winter sing at school tomorrow. In the mornings, we sit together at the dining room table while she eats a scone and tells me stories. Who said what, who did what. She laughs and uses the words like and dude. She is so different from that feisty baby I remember, and somehow still the same.
Last night she crawled into my lap before bed and wrapped my arms around her. I leaned my head into her soft curly hair and breathed. My baby, my child. This person who made me a mom, which is the best thing I’ve ever been. At the party last night, some of the moms were talking about how much they had enjoyed being pregnant. I was one of them. I loved being pregnant with Scarlett, feeling her grow and knowing that she would always be a part of me, that nothing could ever equal that relationship. We are still so close, even though I can’t lie in her bed with her at night or run toward her for a hug. Even though I can’t pour her a cup of water, or help her clean up an activity. Even though I am almost all (only?) words. We are still a team.
Scarlett has always been independent. I was reading a letter on the blog about her first day of preschool, when she was entirely unperturbed that I left, and equally calm when I returned. Many of the entries described recent times as rough, as we navigated our changing landscape with a toddler. But there was a lot of laughter. She was my beautiful golden baby, and now she is my impossibly tall, gorgeous child with strong opinions and creativity positively sparking out of her fingertips.
When Scarlett was a baby, my friend Cameron gave me a children’s book that I could never get through without crying. It was called Someday, and it told the story of a child growing into an adult, her mom eventually a memory, a photo on a table. The book upset me, because I didn’t want to be a photo on a table, even if the photo was of a beautiful white-haired woman who had led a very long and happy life. And now, when I look at that book I feel differently. I want to be the photo of the white-haired woman, anything else will not be enough. Mantras roll through my head as I try to comfort myself, as I tell myself that no one knows, that my future could be long and happy. And that even if it isn’t, I have had a long and happy past.
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Hey Sarah
I’ve been reading your posts for awhile after finding you on the NYTimes and love your writing. This one stuck out to me in particular because I also used to live on 23rd and 10th in NYC. 458 W. 23rd street, to be exact. What a small world. Thank you for sharing your life with us.
Even though i met you here in California, I still picture you in New York—a “best and brightest” in the city. I can’t imagine what it must feel like to be “almost only” words, but if that’s true, then the golden lining is that your words are the best and brightest words in the world. they are clear, and powerful, and meaningful, and exciting, and funny. like you.
sending so much love—
laura
I pray for you and I want you to keep on living, keep on breathing, keep on writing for a long, long time!! This was a beautiful post-I have my own daughters that awe me and frustrate me all day long. From the moment they wake me up staring at me within an inch from my face (why do kids do this??) till the second I feel their grasp loosen on my hands and I know they’ve fallen asleep for the night…
I can feel your mode. Be well.
My good friend gave me Someday when I had my daughter six years ago and I bawled.
No matter how long mothers have, it’s not enough – not for ourselves or our children. I hope you get decades more than you imagine.
Hi Sarah,
Thank you for sharing your life with us.
ALS is a brutal disease. My mom was dx in
2011. I recently received an email from change.org
from a young man who has ALS. He is requesting
FDA accelerated approval for a drug company
called Brainstorm. Their drug is called Nur Own.
He’s had a lot of success with it. Just wanted to
share this with you.
You are in my thoughts and prayers.
Love,
Roshnee
Hi Sarah,
Just getting back to reading your blog. My father, who had ALS, died in June. Although I loved him and we were close when he was living, it is only in his death that I realize just how much of an impact he had on my life. He made me feel loved and safe and those are the most critical things a parent can do. Even though he is no longer physically here, I still feel his love. I see the impact of not being loved or protected in my work (I am a child welfare lawyer). I owe every good thing in my life to the love and support I received from my family. Your stories illustrate that you are giving your daughter what she needs in spite of your challenges. I hope that I get to be the lady with the gray hair in the photo (that book makes me cry every time I read it) and I hope that you do too.
Best,
Ida
Hi Sarah,
I have been following your story for a while now, since I read your feature in the MDA Quest Magazine. I have an adult form of muscular dystrophy (Limb-Girdle) and although what we are going through is not the same, your journey and honesty in telling your story have been very inspiring to me as I face my own circumstances. I just wanted to thank you!
I wish you all the best going forward. Happy New Year!
Chris
Hi Sarah,
I keep checking for new blogpost entries but haven’t seen any recent ones. Hope you are doing well, and it is just the year end celebrations that is keeping you busy. Do write when you have time. Love reading them. Wishing you and yours a terrific 2017 — a year full of hope and dreams !
Ipshita
I want to get this book. It sounds sad yet meaningful. Do you ever talk to your daughter about heaven? The beautiful part of faith is the belief and hope you will be reunited with loved ones. The belief they are in a better place when they are no longer with us. They are looking down on us.