Yesterday, on my 37th birthday, I woke up to the sound of little feet running toward my bed.
“Happy birthday Mama!” Scarlett yelled, her face nearly hidden behind the gifts she was holding. My face was also hidden, behind my breathing mask, and although I wanted to scoop her up and snuggle her, all I could really do was watch her and smile.
Rob unhooked my mask, took off my foot braces, and raised our adjustable bed so I could sit up to open my gifts. Scarlett was most excited about the one she had wrapped herself. It was one of her stuffed animals, a beanie goat who has the same birthday as me.
To be unable to open your arms to your child, is there a word to describe this? I would say it’s unbearable, but of course that’s not true. Nothing that you live through is unbearable. Scarlett climbed in bed next to me and we looked out the window together: ocean, a valley of sleepy houses, the cotton candy sky.
“Look at all the old memories in the sky,” she said.
Whoa, I thought. But what I said was, “What do they look like?”
She started to say something about the trees, when Otto went crazy barking at nothing, or maybe a squirrel.
Scarlett laughed, utterly delighted. “Otto is barking at the memories!”
We watched him for a few seconds. “He doesn’t know what a memory is,” she observed.
Memories in the sky. I loved this idea, of course that’s where they are. That’s why sometimes when you’re walking along, you just get hit by one. Maybe that’s what makes people believe in reincarnation, when they smack into someone else’s memories.
We stared at the sky a while longer, as the pink began to fade. I had a sudden memory from college, when I finally learned why the sky is blue. I was in an atmospheric and oceanic studies course, a huge lecture hall with an animated professor who gesticulated his way across the stage, scattering molecules like a rising sun. He explained the concept of density, heat rising because it takes up more space than cold air. He made us all laugh with stories of his kids trying to light things on fire.
I was lost in memories, and even after we got up I stared out the window from my wheelchair wondering what other stories were up there in the sky.
Scarlett’s early morning wisdom gave way to her normal routine, slurping yogurt through a straw, buttoning up her uniform, lying about whether she’d brushed her teeth. She left for school, and Rob left for work, and it didn’t really feel like it was a special day. I don’t care much about my birthday. I much prefer other people’s. I know the years that pass should feel more important than ever—I made it—but it just seemed like another day.
And then, nice things. A friend came to visit and brought me a scone. Another friend surprised me with a gift and stayed for tea. At soccer, all the parents said happy birthday. One mom brought me cupcakes and a card. Flowers arrived from Rob and Scarlett. My sister-in-law gave me a beautiful necklace. So many people reached out.
The day ended with a family dinner, tapas and cava on the enclosed back deck of a small restaurant. My brother’s card was his handwritten memories, and a gift card for a book—you’ve read everything, he wrote, so you pick. My nephew Jack gave me two beautiful works of art, his own creations that my sister had framed. Jack and Scarlett sang happy birthday over and over until we had to ask them to stop. They ate more dessert than anyone else.
After dinner, we walked out into the night, the past twinkling in the sky above us. My 37th birthday floated up to join it.
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Happy Belated Birthday! Sounds lovely.
Walking in Manhattan in your high heals is right up there in my sky of memories.
Memories of taking pictures of a beautiful dark haired baby are up there too!
Happy Birthday Sarah….mine is the 18th. I enjoy your blogs. You’re amazing and an inspiration to all of us living with this disease. Thank you.
Hanging out with you at my 40th birthday party is one of my fond memories.
Sometimes you just take my breath away. Happy Birthday, Sarah.
Love, The Doody’s
Beautiful. Thanks for inspiring!! xo
Happy belated! I think you should start an online book group here…
Deidre
What a great idea for a children’s picture book. You and Scarlets should write it. Happy birthday!
Sarah. This is beautiful. I was a year behind you at OPRF and your blog inspires me to parent more intently. Thanks for sharing your journey with all of us.
Happy Birthday Sarah. So beautiful. I will never forget these words, this image. “Memories in the sky”.
My throat aches thinking of all the beautiful memories I have that involve you. I can truly say that I’ve never had a memory of child of mine coming up with a such a beautiful thought—so introspective. She is a wonder. I’m at the age and stage where I really appreciate my memories and most of them were wonderful.
I just discovered you a few weeks ago. You are so inspiring. I love you how you look at it all and how you express yourself in your fantastic writing. You have a fan in Los angeles. You are brave and strong and beautiful. Warmly, Keri moret
Happy 37th Birthday, Sarah. Wishing you many more birthdays with Rob, Scarlett & your wonderful family & more amazing blogs!
Sarah,
Happy birthday to you! I’ve come to your blog many times. Laughing, smiling, tears forming in my eyes as I read your words, I always leave being grateful. Tonight, after a small trial, I needed to see your words…’nothing that you live through is unbearable’. A simple message. But oh so powerful. Thank you for that. Love from Minnesota, friend.
Kelli
Sarah,
Happy Belated Birthday. My husband had ALS and even though I went thru that with him, you just give the disease a whole new meaning. Living with it as a parent has to be so hard but that Scarlett makes it bearable. You are such a strong person. Never give up and I pray for you and your family always. You truly give a new meaning to life.
Sarah, I am new to your website but not unfamiliar to your story or to your parents. You are a gifted writer with great insight into the important matters of what we call life! You exude peace, yet motivation and drive to accomplish daily events that so many of us take for granted. Your strength and courage to battle this disease and continue your quest to make others aware of ALS and the need for immediate research for a cure are both amazing and inspiring! Sarah, I am looking forward to meeting you at your fundraiser in Chicago at the end of this month. God bless you, your family, and the researchers who are looking to find a cure for ALS! Sincerely, Maureen (Gamp) Guzy
Happy belated birthday Sarah!
You are such a wonderful writer.
sounds like the perfect birthday to me. xoxo
You are such a gifted writer. These words- “After dinner, we walked out into the night, the past twinkling in the sky above us. My 37th birthday floated up to join it.”
I second the motion of turning this into a children’s book. I’ll never look at the clouds the same way again. Thank you for that.
Happy belated birthday,
Jamie
Belated Happy Birthday Sarah ! What a wonderful concept of storing all our memories in the sky. I am sure Apple got the idea of ICloud from little Scarlett !
Happy belated Birthday SC! I remember my 37th b-day last year… haha! Not
hugs and kisses to you!