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Magic is the Moonlight
Last night I was brushing my teeth, getting ready for bed, and while I was brushing I studied the decor in our upstairs bathroom. We live in a 1941 colonial with three very tiny upstairs bedrooms and one small upstairs bathroom that I guess you could call Art Deco. It’s got yellow and black original tile and fixtures. The original owner’s son told me that not only did his whole family use the upstairs bathroom as the only bathroom back in the day, they also rented out the third bedroom to a government employee during World War II. Wow. That’s patriotism.
Anyway, getting back to the toothbrushing. A while back I seized on the Art Deco theme and framed some old sheet music from that period that was also in shades of yellow and black, and hung it on the walls of the bathroom. One I framed and hung up was from the 1943 movie Bathing Beauty.
Last night as I was brushing and studying Bathing Beauty (which I’ve never seen but I’m sure is delightful), an old memory came back to me of when Sarah was very small, a toddler, and she and I would bathe together. I would get in the tub first and Max would undress Sarah and then I would call out “All bathing beauties report to the bathtub!” and he would bring her in and place her with me, and she would be so happy and excited to be a bathing beauty and for our bath together.
It was a memory that I hadn’t recalled in years and it came back to me so sweetly and suddenly, how we used to bathe together in the tub and how she loved being bathing beauties together. I have to say the memory brought me a lot of pleasure to think about, and I went and asked Max if he remembered too and we talked about those times for a while. Perhaps this is a good sign that I am a little less depressed and can take some pleasure in good thoughts and memories right now.
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Clouds
Sometimes I wonder if I should play the Dead Child Card more and just take a break from responsibility for a while. Just excuse myself from having to wear clean clothes, brush my hair, exercise and eat a balanced diet, because I have a Dead Child, you know. Why would I be able to function normally? But I can’t really bring myself to do that.
What always comes into my mind is a bit of an old story I once read of how Sigmund Freud said that work was a tonic for him after his son died in World War I. I do feel that work is very grounding and stabilizing right now, particularly the tasks I can do with a kind of unconscious competence. What else is stabilizing? Very hot showers. Coffee in the morning.
I’m not entirely sure why I feel so bad right now. Maybe because summer is coming and Sarah died during the summer. What will it be like when this is no longer the first year without Sarah, but the second, and the third, and the rest of our lives?
There is so much accidental and arbitrary death. People lose their lives for no reason at all. Illness and tragedy strike. How could I have known that was the last time I would see Sarah, last August, when I left for my trip? I just wish I had held her in my arms and never let her go.
What was death like for Sarah? I hope there were a lot of people warmly welcoming her wherever she went. I think of her grandmothers. There would also be her friend Chrissy, her friend Gabby, her friend Leon, her classmate Samantha from PEP, and Lucy, another little girl we know who died of a genetic disorder. Nick, her elementary school classmate. There would be Harry, our beagle who died of lymphoma. Nahid, Leila’s mother, who died of breast cancer. Sarah’s Uncle Ted and her cousin Ethan. Our next door neighbor Edna. My law school classmate Terri’s daughter who died around the same time as Sarah of heart issues. My law school boyfriend’s son. Rick Siegel, my old boss, who told Sarah to call him Zayde. My friend Susan’s husband. Dr. Z’s son and daughter.
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Holidays
Last night I dreamed that I was teaching a small class of middle schoolers or high schoolers some sort of elective. I hadn’t really prepared a curriculum and was sort of BS-ing my way through the lesson, which consisted of walking around our neighborhood park and pointing out various conifers and their rate of growth. Some pine trees are enormously tall, and some are just the size of Christmas Trees, I wisely pointed out while they took notes. One kid raised his hand and asked a “Will this be on the test?” kind of question. He wanted to know if the kids would need to decorate Christmas Trees as a requirement of the class. No, no, I assured him, I’m Jewish and don’t do that sort of thing.
Sarah definitely knew she was Jewish. But when you have a child with special needs who doesn’t necessarily understand religion or the nature of religious holidays, and most of all, why other children are getting presents and you’re not, you approach religious holidays as festivals rather than religious orthodoxy. I remember when Sarah was about two years old she spotted Santa at a kids’ party and squealed with delight. We had no idea how she was acquainted with Santa. Probably television or just the cultural zeitgeist.
We certainly didn’t want Sarah feeling like she was left off the list of good kids for whom Santa brings presents, so we provided both Christmas and Hanukkah presents. She believed in Santa all her life, and she really cleaned up present-wise. It was hard sometimes to find a range of good toys that suited her and that she could have fun with and manipulate physically. I followed a page on Facebook called “A Very Special Needs Christmas” that had a lot of good ideas for adapted toys and sometimes we just got lucky. As she got older, she just wanted Minecraft and Minions and Stampy stuff primarily, and a few books and clothes.
Holidays are just so empty and hard without her. I don’t think that’s going to change. I cooked chili and banana bread this weekend and did my best to keep my mood up but it’s just so difficult. Sarah loved balloons and we bought her a balloon for every holiday. I can’t go to Safeway or Giant without wanting to buy one and bring it home for her.
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Higher Power
Today we may or may not go to a Memorial Day Barbecue put on by Max’s AA group that will be held prior to their meeting. It depends on the weather and how I’m feeling. I guess if I go to the BBQ I’ll probably end up staying for the AA meeting too. I’ve been to a few AA and Al-Anon meetings and while they were okay, they didn’t touch anything deep inside my soul as far as trauma or compulsion or other issues were concerned.
Max has of course been in AA for decades now, since he was a teenager, and he leads a local AA meeting over Zoom too. He has a lot of AA friends and sometimes I feel a little jealous. Where is my band of supportive alcoholics and addicts and so forth helping me get in touch with my higher power? When Sarah died, and I was driving home from NYC, several people from AA were waiting with Max for me to arrive and I’m glad they were there for him.
In AA you have to believe that there’s a power greater than yourself to whom you can turn over your addiction and be helped. It’s really the power of the group, although many people of course pray and see the power as coming from God as well or choose another higher power too. Max chose music as his higher power. He has always been kind of obsessed with music and has an encyclopedic knowledge of jazz, R & B, and really the whole history and story of music.
What would my higher power be? I’m not sure I have any idea. I’ve never been particularly spiritual or religious, though I definitely know I’m Jewish and what that means. Could Sarah be my higher power? That seems to be putting an awful lot of responsibility on a very young girl. This question seems to be caught up in the whole issue of my search for meaning right now, my trying to find a center for my life. Which leads me right back into feeling depressed again.
I did Google the grief group Compassionate Friends this morning, and saw that they have a meeting at the beginning of next month in a suburb pretty close to here. Perhaps I will tell Max and we will make an effort to go. We kind of poo-poo’d them initially because they mailed us so much of their material and phoned us too, and I think we felt a little too recruited. But perhaps they are worth a try. It’s funny, while I am typing this, a dream comes back to me in which Dr. Z told me he telephoned the leader of our old Grief Group (the one that came to such a bad end) and had a “discussion” with her. I felt vindicated!
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Wishbone
The Wall Street Journal said today that prison inmates are looking forward to meeting Elizabeth Holmes (the convicted founder of Theranos) and have said “I want to be her friend.” Well, I’m glad that Elizabeth, or Liz as she goes by now (I think), is going to have a support system in prison and that she’ll be welcomed into a nice social circle or group, which I’m sure is so important when you are doing time.
But I was thinking this morning that I would like to go to the movies possibly today or tomorrow (it’s Memorial Day weekend) and see Are You There God? It’s Me, Margaret which looks like a real chick flick. I’m sure Max would offer to go with me immediately, only it really looks like the kind of movie to see with your girlfriends, your mother, or your daughter. Sarah might have been willing to see it, but then again she might have gotten bored and wanted to leave after the first 15 minutes. It was really touch-and-go which movies or TV shows would catch her interest. As I said in previous posts, she had little movie obsessions where she would watch a movie like The Wizard of Oz or Cinderella or Ponyo multiple times but other times she had zero interest in other shows or movies I thought for sure she would love, like Wishbone or Schoolhouse Rock.
Anyway, it doesn’t quite seem worth the trouble of trying to round up a group of girlfriends to try to see this movie, especially since it’s already left my neighborhood theater. I’m still feeling kind of depressed and down and not wanting to really do much of anything. I’ve been reading, watching a bit of TV, and playing card games on my phone. And eating too many sweets.
The county pools open this weekend, and pre-Covid, Sarah and I always went over and took a dip together, which she really enjoyed. She loved swimming and moving her body in the water. We got out of the habit from 2020 on, but she loved being in the pool with me and the pool at Camp JCC.
I think part of the reason I may feel so sad right now is that after the Field Day at Sarah’s school, a website called The MoCo Show on Instagram and Facebook posted a little squib about the Field Day and a lot of people who knew Sarah commented, like her former teachers, camp counselors, and school administrators. Everyone talked about what a great smile she had and how much fun she was. It’s wonderful to read tributes like that but it just evokes so much emotion. It’s hard. It’s upsetting when people don’t mention Sarah but it’s difficult to process sometimes when they do. I guess I’m just overwhelmed.
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Tootsie Rolls
Yesterday and this morning I’ve been feeling pretty depressed and tearful, and I did quite a lot of crying thinking about missing Sarah. I walked up to our little downtown shopping area at lunchtime yesterday and looked for a bathrobe and a few other things, and just realized I felt very down. I was flipping through a rack at Marshalls and saw a bathrobe that looked okay, and then next to it there was a robe with “World’s Greatest Mom” or something like that embroidered on the back, and I just felt profoundly sad and kind of angry, thinking why do they have to put that here on this rack?
I bought the robe that looked fine, left Marshalls and was just standing in the atrium of the mall, staring down at the children’s play space, eating some Tootsie Rolls I bought at Five Below. This was Sarah’s favorite store, and is a store I like to wander into but Five Below ultimately makes me feel very sad because there are so many triggering things in there. When I was in Five Below, I kept wishing I would see a sign from Sarah, some indication from the universe that she was nearby and present. But it’s all a sensory overload of teen stuff and toys and neon and stuffies and virtually the entire store constitutes a sign from her.
Yesterday afternoon I was mostly lying around on the couch, feeling weepy. I was thinking about when Sarah lived inside my body as a baby, and where she is now, and I decided she still lives there inside my body, inside my heart. This didn’t really bring me any comfort but it seemed to be an answer to my own question of where she is now.
This morning I was thinking again of the robe I saw at Marshalls with the “World’s Best Mother” on the back and how it got me started off in this spiral of sadness, and it occurred to me that I could have interpreted this robe as a sign from Sarah, traveling with me inside my heart. That she could have wanted me to see that robe while I was shopping, smile, and think, “Sarah’s here with me in Marshalls letting me know that I am the world’s greatest mother.” Perhaps if I were feeling better about myself I would have felt that it was meant for me rather than feeling sad and excluded.
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Slide Show
HBO Max rebranded itself into Max some time in the last few days and for some reason we can’t get the app to work on our streaming system anymore. We can open it and get a few frames of a show, like a slide show almost, and then a message comes up saying there’s a problem with our device. Max the Company has been no help at all and says they are working on the issue. So we are behind on our shows — Barry, Succession, etc. and I haven’t watched too many documentaries either. I did watch a couple of them on Netflix: one called Victim/Suspect that was quite well done about an awful trend in policing where rape victims are charged with filing false reports if there isn’t enough evidence, and another called Merpeople (I think) about an alternative lifestyle some people have as mermaids and various other aquatic personae.
A lot of people involved in the Mer lifstyle (I hope I’m using that term correctly) seem like intensely creative people, and fun too, and have unfortunately been rejected by their families, either because of their Mer obsession or because of sexuality and gender issues. How terribly sad. It made me want to adopt some Merkids, or some LGBTQIA kids who may have been rejected by their families, or at least wear one of those t-shirts that says something like “If you’ve been rejected by your Mom, come get a hug from me” that you sometimes see at Pride Rallies.
Then last night we watched a drama called Black 47, set in Ireland during the Great Famine. (It’s available for free on Tubee with a few ads). It was really well done with a strong cast (Hugo Weaving, Jim Broadbent, Barry Keoghan, etc.). Another story of great injustice that made me picture myself helping people somehow, some way.
I’m always moved by tableaux of injustice but I’m not very active right now doing much of anything for the world around me. My heart’s in the right place. But I could be volunteering my time instead of watching documentaries. I could do something. Why is that so hard? I think I’m just afraid of getting hurt somehow. I’m afraid of feeling more pain rather than less. It seems easier to feel nothing right now. Even though I really enjoyed being around the kids the other day at the Field Day.
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Assisted Ballet
Sarah lost skills gradually and slowly over time. We didn’t really think about the fact that she couldn’t do some things she used to do, it just was something we accepted. For a couple of years she was able to take little steps while wearing her harness for assisted ballet. Then, she couldn’t do it anymore, and she just kind of hung around in the harness and slid her feet along the floor. She still loved ballet. She used to use her fingers to point and pick up objects. Then she couldn’t use her fingers, then her hands. For a long time there was simply no good explanation for the lost skills.
The only thing we were told was that when kids have cerebral palsy and grow, they constantly have to readjust to their new size and height and learn some skills again. But it didn’t seem to explain her skill loss. It especially didn’t seem to explain why she didn’t talk at all anymore, and the big question, why she seemed like such a shining star academically in preschool and by third grade was barely hanging on. “I guess she’s just not as smart as you thought,” said the County Special Needs Administrator oh-so-compassionately.
We didn’t get an explanation until finally her whole condition received a name and diagnosis as Complex Early Onset SPG-4 around 2020, and loss of physical skills was one of its features. It explained a great deal, and Max and I cried together. We didn’t know how much physical regression and skill loss there would be, whether it would be like ALS and other neurological illnesses where she would eventually need assistance to breathe and pass urine. I guess it’s better that her illness did not advance that far. I just don’t know.
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Field Day
Yesterday’s event at Sarah’s school turned out to be a lot of fun with relatively few bad moments. I remembered how to drive to the school despite my fears. When we pulled into the parking lot, “Sarah Smile,” the old song by Hall and Oates, was playing on the 70’s station I usually listen to in the car, and that gave us a bit of a sad moment. We both wiped our eyes and then went into the school. After that it was more fun. The principal greeted us and brought us out onto the field where there were big blown up pictures of Sarah and the scoreboard read “First Annual Gilbert Games 2023.” Really, this is the highest athletic honor anyone in our families will ever achieve!
We saw all of Sarah’s teachers, administrators, her aide, and her friends. Danny was a bit shy and was concentrating hard on his appearance in a dance performance that took place as part of the opening ceremonies. He was also a heavily featured athlete in the running races, the relay, and the modified softball. It took Sammy a little while to recognize us but he was happy when he did. Jessica knew us right away and waved whenever she saw us.
We gave out awards and ribbons to the winners in wheelchair races, modified softball, long jump, Noodle Javelin (my personal favorite) and all the other track and field events that were held. I congratulated each kid and told her or him that Sarah would be so proud. I made sure the kids knew they were winners. My favorite moment was when one boy came over to collect his ribbon and I placed it around his neck, congratulated him, and told him Sarah would be very proud of him. He sighed and then murmured “Sarah” very happily. I don’t know if her actually knew her or not. But I really felt like she was there with us.
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Cincinnati
Today I’m officially on leave from work and we are going over to Sarah’s school for the Field Day named in Sarah’s honor. I’m trying not to stress and get antsy about going there. The last few days I’ve been sort of torturing myself in my mind with the notion that I will no longer know how to get to the school, how to drive there from our house. But I believe I do know how to get there and it shouldn’t be an issue once we get in the car. Or I can just ask Max to use his iPhone to guide us.
Max doesn’t drive. I’m not sure if I mentioned that before. He never got a driver’s license when he was a teenager or later on either. There was his drinking problem when he was a teenager, and also, he says he was scared off by his father’s and older brothers’ driving habits when he was a kid. If Max’s father thought he heard a strange noise the car might be making, he would pop Little Max into the trunk and close the lid and tell him to listen for where the noise was coming from in the car while he drove around at various speeds. I know! Can you imagine? So Max had an almost phobic feeling about cars. Plus his older brothers are very intense drivers (everyone is really in Philadelphia), lambasting everyone around them and calling out other drivers for the slightest perceived traffic infraction. It can be kind of fun to ride with them but it’s nerve-wracking too. “Hey! New Jersey! Whaddya want? Any closer to my bumper I’m gonna need a reacharound!“
I was too nervous and uptight to pursue my license or learner’s permit in high school. I finally got my license when I was 21, during my senior year of college, when my best friend Laura and I decided we would share an apartment together in Cincinnati (where she was from) and look for entry level jobs. I really didn’t want to go back to New York City and live with my family and try to find work there. (I know my family has lived in a lot of places, DC, Boston, Austin, and New York City.) So I really needed a driver’s license to be able to live in Cincinnati, and I finally got one.
I was thinking about Laura (we are still in touch once in a while) and our Cincinnati years the other day at my niece’s college graduation. I remember at my own graduation lunch, my Uncle Michael asked me what my plans were for the future and I told him that my friend Laura and I were renting an apartment and job-hunting together in Cincinnati. He turned to my father and expressed bafflement and trepidation that my father would allow me to move to a strange city and into an apartment and community without personally approving and vetting the entire situation beforehand, stating he would never permit me to do any such thing. My father just said that he trusted me and that he thought it would be okay. My uncle was still nonplussed.
I think I was relieved that I was raised by my own parents rather than my uncle. The graduation speaker at my niece’s graduation quoted Michelle Obama’s book Becoming, in which she says “Don’t make decisions out of fear. Make decisions based on hope and possibility.” I definitely think that’s true.
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The First Year Without Sarah 