My little girl is seven years old today. When you are diagnosed with ALS, you understand that you have a 50% chance of dying within 2 to 5 years. Scarlett was two years old when I was diagnosed, and it was reasonable for me to believe that I might not make it to her seventh birthday.
But here I am.
She woke up to balloons and a Truly Me American Girl doll, the kind that looks like her: hair that Scarlett once described as “the color of chicken nuggets”, brown eyes, and a small smattering of freckles. There was a toy that looks like Otto, and some matching outfits for Scarlett and her doll, who she named “Scarlett”, although by the time she left for school, the doll’s name might have been “Elizabeth.” It was all a little confusing.
This morning was not like her second birthday, when I made breakfast, wrapped all of her gifts, and took her on her first cable car ride. It was not like that at all. And it sounds insane to say that I still feel cheated, even though I get to be here when that was never a promise. I know the right thing to say is that I feel so blessed, so grateful, so full of life. And I do feel those things. But I would be lying if I said that I don’t wish for more.
It has been a beautiful day, despite my ambivalence. Rob and I got to go to school and read her class a book. She chose The Day I Lost My Superpowers, a book she received on her fourth birthday, and which has an illustration of a child’s naked butt, the only reason it was selected for this big day.
Rob: “Scarlett, you are not to mention the naked butt in your classroom today. Do we have an agreement?”
Me: “Seriously? I was going to mention it.”
This admission just earns me a look from Rob.
We make it through the morning with no nudity references, although the girls giggle loudly when Rob reads the book. They go around in a circle, each saying something that they like about Scarlett.
“You are a wonderful friend.”
“You are funny. You always come into class with a smile on your face.”
“I like the way you draw dogs.”
Scarlett will spend the afternoon volunteering at a food pantry with her first grade class (a fact I am thrilled about, as it will be a good reminder to think of others on a day that is otherwise very inwardly focused) and then our family will go to dinner at Benihana, where she will get shrimp tails thrown onto her head, and she will laugh her deep, raspy cackle, the one that makes everyone around her look up and smile as they secretly wonder to themselves how long that child has been a smoker.
I love looking at her. I can’t believe how much she has grown, how much she knows (or at least thinks she knows). I can’t believe I’ve been her mom for seven years, and I can’t believe that I have to worry about how much longer I’ll get to keep that job. Life is good. Of course life is good. That’s why we all want to keep living it, even when things are hard. Most of my time is spent thinking about small things, like what to have for dinner or whether Scarlett needs new socks. But on a day like today, we are celebrating something huge. Seven years ago, my baby was born, and I picked her up in strong arms and carried her home. There was no disease, there was only this new life. And it changed everything.
Call me crazy, but this is true. Given the chance to choose between a life without ALS or a life without Scarlett, I wouldn’t have to think twice. ALS can take my muscles, it can take my abilities. But it will never be able to take away the fact that I got to be this child’s mother. And nothing in the world has been better than that.
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I’m sure others have said this, but I’lll say it anyway: what a treasure, what a gift you would be leaving for Scarlett. To have these wonderful words from her mother, written for everyone to see, for her to read over and over…
And maybe, just maybe, with all of the hope on the horizon for us as of late, she won’t be reading those words thinking of her lost mother anytime soon.
Thank you for your gift to her, and your gift of sharing to us.
XO
Happy Birthday to Scarlett!!
You are an amazing mom Sarah!!
Roshnee
Beautiful and well written. As usual.
Happy Birthday to the little one.
P.S. I would have made reference to the ‘naked butt’ ….
I mother a 7 year old first grader too, from a power chair due to MS. (And his eye-rolly 13 year old sister.)
What you write are some of my exact thoughts daily. “At least I’m still here to parent to them.” I personally know two mothers who have died who I am positive would rather be here, mothering from a Power Chair and mothering with all the other difficulties that come from various diseases.
We are so lucky to have them. And truly, they are lucky to have us.
You will see many more birthdays than you are imagining. I don’t have to tell you that ALS effects everyone differently. I have been involved with so many people, support groups, charities and blogs and everyone’s story is different. My brother Scott has had it 13 years. All he wanted was to see his 9 year old graduate high school. His doctor told him he didn’t think that was possible. That was his one wish. I cried myself to sleep that night making every deal I could think of with God that if He could just see fit to let him have his one wish I would have done anything.
Today his daughter is about to graduate college, he has had 2 grandchildren and another daughter married.
Since he was diagnosed, I have lost almost a dozen friends and family. Not from some horrible disease that people automatically equate with a quick death, but, from other things. Cancer (4) car accident (2), aneurysm, heart attack (3, one was 31.) My mom with Lung Cancer, a good friend who contracted an infectious disease and went from healthy to dying in less than one week.
Never in a million years would i have expected that. No one could have. None of us are gyaranteed tomorrow, we just have right now. You are such an inspiration to so many people. Keep up the positive thoughts. We are all still fighting everyday for a cure. We will find it, and you will see and be involved with more things than you would have ever imagined. You are a truly good person. Scarlett is blessed.
Happy Birthday to Scarlett! Heartwarming how much you love that little one <3 Thank you for sharing your joy.
Sarah, this is so beautiful. I laughed at the naked butt references….Scarlett has a great and wacky sense of humor. We love her. We love you all. Happy birthday, Scarlett!!
What a beautiful piece of writing on your daughter
Happy Bday to the special young lady! Her life is much more rich and better because of you. Sending you both my prayers and love ❤️
It is quite irritating to think you must display gratitude when you are feeling despair and feeling cheated. You are cheated. It is a must you share that…Jeeze…how cheated you are…!!!
Gratitude comes too…but, it does not have to be a choice…xxxooo
So beautifully written. Happy, happy day to sweet, silly, and thoughtful Scarlett. Thinking of you all often. Big hugs to Scarlett on her special day! xo
Happy birthday Scarlett! Hope you all had fun at Benihana:). I love your last paragraph. I came to my own conclusions about motherhood several years ago-it’s worth it. Beginning with the birth of my first daughter. I made a deal that if I got to have her, I would let nothing bother me again… and after I had her was when I got my first flare of RA. No one could diagnose all my symptoms until the flare I had after baby #2. the worst wasn’t the physical part-it was by far the mental. Being grateful, never taking any moment for granted, those are the things that carried me through. I have a new normal now-it includes meds, doctors, therapy, and I won’t give up. Even though deep down, I came to my own peaceful conclusion already-that it was worth it.
Longtime reader…this one hit it out of the park for me. I would do anything for my kids too, Sarah. Happy birthday Scarlett…Much love for you and your family, from Minnesota.
Happy birthday Scarlet!!!
You have all the rights to feel as you do. I think that we all wonder why we do not have it as easy as others have it. I know I do. I think that one of the only advantages of living with a life threatening illness is the awareness of time. Nothing is granted, we know that pretty well. I got my diagnostic few days after my soon was born. Every one of his birthdays is a mix of feelings. The feeling of not knowing how long I will be able to mother him. The huge happiness for being able to be with him one more day.
And as Kelly Murphy said before me, nobody has anything guarantied. I always remember a lovely lady from my times in England. She was barely 39, two children, the youngest one had turned 1 few days ago. She went for a nap and she never woke up. As simple as that. Almost 8 years had gone by and I cannot forget her.
Thank you Sarah. You describe very well what many of us go through on daily basis. I wish you many more years with Scarlett!!! Big hug for the tree of you!!!
Sarah, I read your posts regularly, not just because you and I hail from the same place, Oak Park, IL, or that I, like you, have ALS, but because you so often beautifully express what I’m thinking or feeling. My kids are older than Scarlett, by a lot, but the feelings of a mom don’t change all that much even when kids get older. I’ve always worried that my kids weren’t ready to lose their mom. For me, I didn’t think I’d see my kids graduate college, but I’m fortunate enough that I’ve passed those milestones and if I’m lucky I’ll see my oldest get married in September. On the other hand, I don’t feel at all lucky or blessed that the last seven years of my life have been an ever increasing challenge for my family and me. I hate when people say that I should feel blessed. I’m not a saint by any means. I’m grateful for the time I have. I try to embrace the concept of one day at a time, but surely if this life is a blessing, it is wearing one heck of a good disguise.
Ahhh Sarah, what a beautiful piece. You are so spot on as always. I can’t believe Scarlett is 7 years old! We are all so blessed to know you and love you, no one more than Scarlett herself. You have managed to capture beautifully the very essence of a mother’s love.
Thanks for that, honey and love to you Rob and Scarlett as always.
Beth
Dear Sarah-
I have always felt that children’s birthdays are also a day to celebrate mothers. You are a remarkable mother, a women of passion, a sage for those of us who simply don’t know. The stories you share – your life – reveal layers of insight and allow us all to learn from you. I’ve said it before, “You wow and move me, so.”
Happy birthday to beautiful, spunky, bright Scarlett.
Sending love and best wishes to all of you!
❤️ Roberta
Andy says Happy Birthday Scarlett and hi to Otto too.
I love you Sarah! What an inspiration you are to so many! You rock. AC
Happy Birthday to Scarlett and Happy Day to you, Sarah. For, as you so often acknowledge, each added day is a gift to you and to all of us.
May your daughter’s joy and health and love of life and new discoveries continue to fuel and fulfill for many more years to come.
Love,
Eric
Dear Sarah,
Thank you for sharing your incredibly difficult experience. You should realize that your words have great meaning for all of us, to a lesser and greater extent for each person. For example, I am 76 and my life seems to have gone by in a flash. I may have only a few years left, also , but I am still riding my bike and may hold out for longer. Anyway, your honest reactions to your situation help all of us face the reality of existence and help us to appreciate each passing moment.
Sending love and best wishes.
Liz
Former Music Teacher at Longfellow School
Simply beautiful.
Wishing a very happy birthday to Scarlett. And as someone mentioned in an earlier post, a very happy day for an amazing Mom
“ALS can take my muscles, it can take my abilities. But it will never be able to take away the fact that I got to be this child’s mother. And nothing in the world has been better than that.”
You’re awesome, Sarah. Happy birthday to your little beauty!
You deserved MUCH MORE than 5 years of dwindling physical ability. Yes, it’s wonderful that you are here and that you will probably be here to see her celebrate double digits, and perhaps longer still.
Life isn’t a guarantee but expecting – at least – mediocre health so you can raise your family with some basic level of ability isn’t much to ask of anyone.