Scarlett starts first grade tomorrow. I’m very excited for her, even though the only thing I remember about my own first grade experience is when my friend Beth and I made circles of glue on our desks and decided we would sell our tiny treasures for five cents each. We saw ourselves as entrepreneurs, but our get-rich-quick scheme was foiled when it turned out there was no market for dried discs of Elmers. Other things must have happened in first grade, but that’s literally all I’ve got.
I haven’t felt much like writing; there seem to be so many other things going on, and I’ve spent the last two days of summer vacation with Scarlett, sometimes arguing, sometimes exploring, sometimes just me watching her. I know she looks older, because other people keep saying so, but I don’t really see it myself. It’s sort of how I think I still look the same, even though I’m technically aware that I’ve changed significantly as a result of ALS. My daughter is taller. I’m growing gaunt, the bones under my skin jutting out like poorly concealed weapons. In my mind, though, we are both pink cheeked and strong.
Yesterday we went to the East Bay Vivarium in Berkeley, so that Scarlett could see tarantulas and scorpions, crested geckos, and a monitor that she declared was the size of a crocodile. We got there just as all the snakes were being fed, and in each tank was an Easter yellow live chick, waiting to be squeezed by a boa or devoured by a python. The chicks were noisy, as if they had some idea as to their fate. The smaller snakes were eyeing mice, and there was a little tub of crickets on the ground, lunch for some other lucky creature. Scarlett wants a tarantula, the more colorful the better, even though she knows the brightest ones carry the most venom. We’re not getting a tarantula, hence our visit to observe them in captivity.
After the reptile bloodbath (which was entirely blood-free), we went down the street to the book publishing company where I worked for many years. It was fun to see former coworkers, and to grab a few books to take home with us, which was always one of the greatest perks of the job. It was my first time visiting the office in a wheelchair, but if people thought it was strange, they didn’t show it. Everyone seemed really happy to see us, and I was thrilled to be back in a place that held such happy memories for me.
Today was a little rougher, after a too-late bedtime for Scarlett and a too-early start to the morning for both of us. Rob is traveling, as he was last week, and that throws off our schedule. But we were lucky to have my sister and her family stay the night with us, even though they had just gotten home from a two-week trip to the Midwest. Fiona looked like a different baby, and I promptly ingested her cheeks, and then set about excessively kissing my nephew Jack while I was reading him one of the books we’d gotten at my office.
They left this morning, and Scarlett and I were irritated with each other by 10 AM. We finally got out of the house to take Otto to the dog park, which was a critical move for everyone, although I very nearly told a perfect stranger that she had an amazing body. I’m so glad the words didn’t actually coming out of my mouth, but they were close. I don’t mean to sound creepy, I was going to preface my statement, because that definitely makes everything way less creepy. She was in workout leggings and a T-shirt, slip on sneakers and a ponytail and was probably in her 40s. She looked exactly how I want to look. Healthy, fit, sort of effortlessly pulled together. With calve muscles. It doesn’t happen to me often, that I consider inappropriately complimenting someone I’ve never met. But sitting in his wheelchair is making me a little bit crazy. The things I crave, the things I notice, they are not what they used to be.
And now here we are, another school year starting, another season, another phase of life. I wish I could slough off this disease the way a snake sheds her skin, just leave it behind. I wish I could run the way my dog races across a field. But I’m taking my daughter to first grade tomorrow, which is a different wish, and it came true.
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It was soo good to see you on Monday Sarah! You look great despite this awful disease that has taken you. You continue to inspire me to live a better life and to notice the little things that are so important every day.
I luv u SC!
-D
Good luck to Scarlett ! My daughter went to the same wonderful school. Your writing today made me laugh right away at the first sentence and yes, it also made me cry. That you acknowledge your wish to gain all that you have lost and simultaneously recognize the deepest joys is amazing and inspiring.
Sarah, good luck to you and Scarlett as she begins first grade! First grade is a big deal even if you don’t remember all the details years later! May many more wishes come true for both you and Scarleet.
Love, Beth
And a big PS! You ARE amazing and beautiful.
Hi Sarah,
Stuart and I knew your father, Joe, very well in Oak Park! I still keep in touch with many teachers and students.We retired to Danville , Ind in 1987 and live in a huge Victorian. Your Dad may have helped move us!
I read your blogs, and is enjoy the right word? Stu and son Bill died 2 mos apart in 2011.
I admire your humor and your anger in spite of your plight! I am sure your courage helps other similar souls! I feel I know you through your father,
Bonnie Mitchell
Phew! I thought I was the only one whose interest in other women’s bodies seems to have grown inversely to the decay of my own. As a former athlete, I notice fit people more now, as I slowly succumb to a more observational role in life. I literally groaned in admiration the other day when I saw a mid 40′s woman with well developed thighs. As I am a woman in her 40′s who was with her teenaged son at the time, it would not have been creepy AT ALL (not really) if anyone had actually heard me. Thank you for making this admiration “not weird” by sharing your own observations.
Best wishes to Scarlett on her first day of 1st grade.
I was diagnosed in 2007 at 55 yo so I too am slow progression. I have experienced the same emotions that you’ve shared with the exception of having all the frustrations of not being able to do all the normal “mom” activities with such a young daughter. My heart breaks for you. We have ten grandchildren under 16 years of age and I often wish they had known me as a grandma who could play, hug, and do for them. Life has been reduced to a chair or bed and an iPad or tv. The blog you wrote about questioning the “blessing” of slow progression really hit home. I’ve often thought it just might not be such a blessing but a test of perseverance . Each morning finds me wondering why I should get up today. Then I remember what a disappointment I would be to my husband and family if I didn’t give each day my best. EXHAUSTING, isn’t it! I have to believe that as long as God gives me breath, there must be a purpose. I wish you many snuggly hugs and sweet words to make up for all the frustrating disappointments that seem to fill our days.
I have this bulbar mnd four years ago
recently i went for my botok jab for my saliva problem but now i cant even swallow’
‘
can anybody help thanks
don ng
Sarah, you speak for so many of us with chronic conditions. It does not have to be ALS, though I understand that you play in mayor leagues. For me it is not how tired I am many times or things like I am not able to get ride of the idea of having a second child (even when rationally I know that it would not be good for anybody… but is a dream that I cannot lost just jet). My husband sometimes cannot understand how difficult for me is to plan with 6 months or 1 year in advance. I mean… In a good one year I would have see my doctors several times, they are the ones who control my schedule…
Well, a little bit silly probably in comparation with your ALS. But what I really mean is that it makes me feel like a very bad wife, a fraud. You think you are going to be certain kind of wife an mother and you are something very different…