Dear Scarlett,
It’s your birthday and I am using this space for your birthday letter, a letter I used to post each year on a blog I wrote just for you. Life gets complicated, baby, and these days, most of the notes and letters I write to you are private. Today, I’m posting your letter here, so that I can share my thoughts on you turning 5 with a larger group of people. And because I always love to celebrate you.
Last night, you and Daddy and I sat at the dinner table and talked about all of your birthdays. Your first, when you had the hairstyle of an aging CEO, and you ate carrot cake and bounced to Beyoncé in the living room. Your second, when we started our tradition of filling the kitchen with balloons and presents. My ALS hadn’t been officially diagnosed, but we knew it was a possibility. That day, you and I took our first cable car ride together. The city rose and dipped around us, but we sat steady on a bench, holding hands and blinking against the glittering buildings. You were wearing butterfly wings.
On your 3rd birthday, we had a real party for you and your friends. Your amazing music teacher performed, and she ended the show with We’re Going to be Friends by The White Stripes, your favorite song at the time. I was limping, even in ankle braces, and I broke the news of my ALS to more than one curious parent that day.
We had your 4th birthday at The Randall Museum, where you and your friends filed into a theater to watch a ventriloquist named Steve and his crow puppet, Cornelius. “Are you serious?” Steve asked Cornelius. “Are you cereal?!” Cornelius kept yelling back, while you and the gang laughed maniacally. “Are you cereal?” became a catchphrase at your preschool for weeks. You were so tired after that party that you curled up in my lap, and we sat together in the wheelchair I’d had for only a couple of months. Being able to hold you made me love that chair, when I thought nothing ever would.
This year, you invited a few friends over for a small gathering at our house. The 6 of you ate your weight in macaroni and cheese, covered your bodies in tattoos, and danced to your current faves: Hozier, Taylor Swift, Vance Joy, Tom Petty, Regina Spektor, Beck, Queen Elsa. It was a blast, and you seemed like such big kids. But you still nestled into my lap after everyone had gone. I put my footrest up, and you draped your long legs across mine while we read stories.
Now I am the mom of a 5-year-old, and I’m filled with so many emotions that I barely know what to write next. Your birthdays have always been so special and fun. This one is no different, and my prevailing feeling is one of happiness.
Sometimes I feel selfish, always writing about myself and about having ALS. Lots of people have illnesses, or troubles in their lives, and my issues are no more important than theirs. But I’m asking people to care about us, and to care about other ALS patients and their families, because we haven’t been given much hope for our future together. What I’m doing here is advocating for a chance, just a *chance*, to find some kind of treatment that means I might get to spend more time with you. I want to hold you for a lot more birthdays, even when you grow taller than me and tire of my incessant kisses.
The final birthday story we told last night was about the day you were born. March 23, 2010. When everything in front of us felt open, life a series of glowing green lights, and you, creating an entirely new road for us to navigate. It has been such a beautiful journey.
Happy Birthday, Scarlett!
I love you,
Mom
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Happy 5th Birthday Scarlett! We hope you had a beautiful day! Xoxoxo
Today I went for another medical exam. Every time I steep into the hospital I get very nervous and depressed. So I have to force myself to think something beautiful, something that would lift up my spirit and keep my heart beating steady. I do not know how but I found that happy though thinking of you and imagining you having a long and happy day. I do not know you, but through your writing and all the help that your thoughts have giving me, a really feel you are part of my heart and life (I hope you do not feel invaded by a complete stranger) .
Happy birthday Scarlett!!!
What a lovely thing to say! I do not feel invaded.
Big hugs to you, Nohelia.
Sweet baby girl! Happy Birthday from a fellow Aries!
Happy Birthday Scarlett! You sound like you have had some amazing birthdays and some truly wonderful people that celebrate you. Especially that mama of yours. Have a wonderful birthday week!
That girl is, physically, such a blend of her two parents, perfectly blended. She’s gorgeous!
Sarah, I feel like you both have so much more time together – more than either of you imagine. Lately I’ve been really psychic, despite my rational mind, and I feel about ALS the way I did about HIV in ’95, that something big (enough) was just around the corner.
Jane, I am counting on your psychic powers.
Thank you for this!
Happy Birthday, Scarlett! Such a beauty, Sarah. Her smile, alone, brings me joy today.
I usually just read, but today I wanted to comment. To me, your writing is always as selfless as your daughter’s smile today is joy.
Know there are many people praying for your words, spirit, and body to carry on for many more happy years. Thank you for sharing your light.
Thank you, Wendy!!
Beautiful!! Happy birthday, Scarlett.
Happy Birthday, sweet Scarlett! My little fairy. Lots of love, hugs and kisses from Chicago.
Yolanda, Chadd and Sigrid
Happy Birthday Scarlett. Dear Sarah, I hope you get to spend many, many more special birthdays with your little beauty. Each one sounded like so much fun. I remember planning every birthday for my boys and even drove to Dayton Ohio in a February snowstorm on Ryan’s 19th to spent just a few hours with him when he was away at school. It would have been the first birthday We weren’t together and I just couldn’t imagine not seeing him on his special day. My prayers are with you and your family.
Happy Birthday Scarlet!! I remember the day you were born. Michele called me and we were SO EXCITED!! We know you would be beautiful just like your Mom who we love so much. Sarah, thank you for your ever-amazing ability to find beauty and perspective and to be so damn funny.
Love, Love, Love to you and Rob and Scarlet.
Beth
Happy 5th Birthday beautiful Scarlett!!! Sarah, I love all the stories about her birthdays. She has had may special days and I hope and pray for many many more.
Prayers,
Theresa
Scarlett has wider-ranging musical tastes than I do! She’s gonna have to school me…
Dear Sarah, i have strong feelings that we will read your beautiful stories for many years to come. Thank you for sharing, you are a breath of fresh air, my best to you and happy birthday to Scarlett, she is so beautiful.
Sarah,
I worked with your dad, know your mom, and taught all your siblings at Julian Middle School, I think I started the year after you went off to high school. I regret not having the opportunity to know you personally.
I read your posts and am in awe of you and what you are trying to do to bring awareness to a horrible illness and simultaneously raise such a beautiful little girl. Your post made me cry today. I hope and pray that you have many more birthdays together.
With found respect,
Liz R.
Thank you so much, Liz!
Thank you, Theresa!
Love you, Beth!
Thank you, Pat! xo
Happy belated bday Scout!! Oh my how time flies. Sarah you amaze me every day. Look forward to celebrating the girls bdays in a few weeks! Been too long miss you all
xoxo