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Job History
Going back to see some of Sarah’s old schools made me remember when she was very small and she wanted to be a librarian, a scientist, or a firefighter. She also wanted to be a teacher for a while.
During Sarah’s very last year of school there was a concerning, confusing incident with the librarian at her high school. Sarah’s “job” in her school program had been working in the library helping to shelve books and so forth. Then, we found out pretty much by accident that her job had changed to sharpening pencils. We questioned why she wasn’t working in the library and why she was sharpening pencils instead. What sort of “job” was that? What was she learning or preparing for? She didn’t have the physical ability to run a sharpener anyway.
It turned out that a couple of months before, during the late winter, the librarian had made a fuss about Sarah’s wheelchair tracking snow and dirt into the library during bad weather. (This was a perennial problem with her powerchair.) Sarah had gotten offended and refused to re-enter the library under any circumstances. So this stopgap job was invented for her sharpening pencils.
We were surprised and dismayed that we were never informed of any of this and that Sarah had not gone into the library in several months. I met with the principal to talk about better communication, and we worked out a new placement for her in the Main Office greeting visitors. He reassured me that Sarah was welcome in the library and we strategized ways to get her over her library “phobia.” It was a positive meeting, and I was proud of myself for not screaming at anyone or burning down the school.
I wish Sarah were still here, working in the Main Office at her school. She really liked greeting people. As for that librarian, mean people suck. The principal told me she was having a hard year personally, and I didn’t press any repercussions. I’m not into that sort of pound of flesh thing. I don’t like to see other people suffer.
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Driving
The long weekend, with the Juneteenth federal holiday, just ended up feeling empty and sad. We really didn’t have plans with anyone. Most people with kids were doing Fathers’ Day things and a lot of people took off on vacation after school ended. Yesterday, the actual holiday, I spent some time just driving around, again visiting a few of Sarah’s old schools as if seeing their campuses would bring me close to her.
It seems to me I’m at a sad and lonely stage of grieving, where I know that Sarah is dead and that she’s not going to come back. I don’t worry that much any more about where she is and if she’s cared for. I just think about the fact that she’s gone and I’ll never get to see her again. And I feel terribly sad and sometimes I have to sob really deep sobs and almost hyperventilate and choke a little bit. Usually this happens when I’m walking Polly or sitting on the bed with her and she just sits quietly with me or gives me a worried look when I start gasping. I stroke her and feel a little bit better.
Yesterday as I was driving around I had the urge to just drive somewhere far away, to go visit Cincinnati again, or drive all the way to Los Angeles or to Toronto, where I have old friends, and pop by, or just somehow hit the open road and have some sort of new life. A geographical cure for the way I was feeling. It was a pretty inchoate feeling but there was something desperately appealing about it. Like going back in time or trading my life in on a better model.
Last night I had a dream with Sarah in it, which is so rare. I was driving in the old neighborhood my family lived in near here when I was in high school and Sarah was in her car seat in the back of the car. Next to me in the car was one of my brother’s high school friends with whom I had a very brief romance in high school, and whom I’m in touch with these days on Facebook because he and his wife also have a child with a genetic disorder. It’s funny how life turns out.
Anyway in the dream the car kept getting faster and faster, out of control, on roads I had never seen in Bethesda before. I kept trying to deliver Mark back to Leland Street, where he lived at the time, as if he were still in high school. (I guess he and I would have been about Sarah’s age at the time of our fling.) Finally Sarah spoke from the back seat. No, Sarah said, Mark could not come to live in her room.
I’m not sure what this all means. Sarah doesn’t want me using her as an excuse to work out my old shit and get depressed? No other special needs kids (or parents) in her room, ever? Stop driving around town all the time and go home where you belong before you have some kind of accident?
Maybe the dream is a wish for a strong partner who can help right my course when I veer off into these really bad days of depression and lassitude. That’s putting a lot on Max, who is suffering too. He told me at his AA meeting yesterday that the main speaker talked about losing a child. Then four other members spoke up and talked about losing children. It was very hard for him to deal with. Sometimes it’s hard when we are both feeling down. It would be better if we could take turns but life doesn’t work that way.
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Fathers’ Day
Yesterday was Fathers’ Day and I got Max a new electric shaver and a package of toothbrushes (he specifically asked for them) plus a new t-shirt with sushi on it. I bought Fathers’ Day cards from me, from Polly the Beagle, and from one of Max’s stuffie nemeses, Mr. Wizard’s Brother, Mr. Wizard.
One of the more unique, or should I say idiosyncratic aspects of our home life– one might even go so far as to call it folie a deux — is that since Sarah loved stuffies so much, Max and I always endowed stuffies with personalities and some had little lives and adventures of their own. My favorite “alter” was a little wizard that the drug company who made my seizure medicine gave away. Mr. Wizard was a beneficent soul who preached world peace in a horrible broken German accent and loved children and just wanted everyone to get along and practice herbal medicine. That is, when I had my hands on him. When Max got his hands on Mr. Wizard, he was an escaped former Nazi and schill for the drug companies trying to take over the world. Mr. Wizard had many adventures, including disappearing for a few days, at which point he reappeared in our mailbox as — you guessed it — Mr. Wizard’s Brother, Mr. Wizard.
On his side, Max had a Max doll from Where the Wild Things Are that I projected all my dark fantasies on. He was known as “Medium-Sized Max” to differentiate him from Little Max (the smallest of the Where the Wild Things Are toys) and from the actual Max. Medium-Sized Max, according to Big Max, is a vegan who devotes his days to yoga and the eightfold path. Yet I believed that under that facade he was a troublemaker with oppositional-defiant disorder who loved causing problems in the house and needed badly to be sent to reform school.
I tried to make Fathers’ Day a good day, and a fun day. I let Max sleep late, and while he was sleeping I baked some Banana Bread, and I put his presents and cards on the coffee table in the living room. Then I fell back to sleep and he woke me up when came downstairs. We looked at his cards and gifts and he told me he really didn’t need all this stuff, that he thought he had told me not to bother. I felt sad. I knew Sarah was missing from the equation. I didn’t know how to bring her in.
Max went to his AA meeting and I went back to bed. I slept about another three or four hours, just sleeping the day away. I got up again around 4, and then went to bed around 7 pm, exhausted by my depression. I knew Max was feeling bad too and I didn’t know how to help. I guess it was just a bad day for us.
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Unwed Mother
This week I was thinking about when Max and I were going together, back before Sarah was born, and the things we used to do together. We went to estate sales and book sales. We went to festivals and film festivals and to the movies, often dashing off at the last minute. We went out to eat a lot. We got together with friends, individually and in groups. We had a few parties. We hung out a lot, of course.
Max and I got engaged after dating for a little over two years. It happened after my Dad came to town for a conference and we met up with him for dinner. We weremaking small talk over dinner when my father asked “So what are your intentions toward each other?” It was an awkward and embarrasssing moment and I just glared and changed the subject. In the car on the way home from the restaurant I apologized for my father’s intrusiveness. “That’s okay,” said Max. “I was thinking of asking you to marry me anyway.”
So we got engaged. Max’s mom had a diamond engagement ring from Max’s grandmother that she passed down to me. It was perfect. When I had been engaged for a few weeks, I had a gynecologist’s appointment. The doctor did a test, and to my surprise I was pregnant. I was astounded. But the doctor said that the hormone levels were low and I would miscarry in a few days. I was sad but thrilled that I had actually been able to conceive.
Max said we could try again. I think both of us thought it would take months, possibly years, for another conception, if ever. Sarah was conceived very shortly after we started trying and soon I was in the awkward position of explaining I was engaged and pregnant at Age 41.
We made plans to elope to New Orleans together in September 2005, before I started showing too much, buying airline tickets and making hotel reservations. Yes, New Orleans. September. 2005. Unfortunately Katrina did not cooperate. Our next plan was to have a small courthouse wedding in Philadelphia in October or November. But Max’s mother Jeannette suddenly fell ill and died in November 2005, and nobody felt much like celebrating or planning anything.
Finally in January 2006 we decided that Jeannette would have wanted us to get married before Sarah arrived, and when I was 32 weeks pregnant we got married at a small inn outside Philadelphia with our families present. I wore a nice warm dark red velvet dress. Sarah was very much a part of things.
Sarah loved to look at our album of wedding photos. I remember looking at it with her once, when she was pretty small, and explaining to her that she was there in my tummy before she was born. She was still talking sometimes back then. “In there?” she said, looking at my abdomen, very surprised. But pleased.
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Preschool
Sarah lost a lot of little skills very incrementally, and we would sometimes look at photos of her and say things like “Remember when she could hold a book in her hand?” “Remember when she sat up straight when she was doing therapeutic horsebackriding?” There was no particular moment she would lose the skill. It just seemed to flow away. One explanation we got, which I think I’ve mentioned before, was that kids with cerebral palsy have to relearn physical skills as they grow and adjust to their bigger bodies, and teach themselves the skill all over again, and it becomes harder and harder.
This explanation never made too much sense to me. Sarah was tiny. She weighed 39 pounds at Age 10 and she was the size of a four year-old. The notion that she was teetering around like a runway model teaching herself how to walk in 8-inch heels, or like one of those weird challenges in America’s Next Top Model where the girls have to walk on a runway made of jello or something, just didn’t jive with me. She gained weight and height very, very slowly. A pound and an inch a year was huge for her. We were so used to being below the bottom of the growth charts that our pediatrician didn’t bother showing us our percentages.
I don’t think we every really sat with and reckoned with the phenomenon. It was more like, oh, Sarah hasn’t taken any steps at ballet since January. Oh well, Sarah doesn’t use her pincer grasp anymore. Sarah doesn’t really use new words anymore, have you heard her say anything? And no real reason, so the only result of dwelling on it was anxiety and panic.
I drove by Sarah’s preschool yesterday. I was on my way to the mall to get a haircut, and I saw the turnoff for it, and just decided to go on a whim. School ended for the year this week so I didn’t think I’d be disturbing the kids.
The facade of the school and the main parking lot looked just the same. I remember every spring there was a fair in the parking lot with little games and prizes and a cake walk. We would always go. There was a barbecue going on for staff and teachers in the back parking lot and I skedaddled quickly.
Sarah’s preschool was in a school for medically fragile children and it had a nurse, doctor, and a pool that the preschool kids could use as well as great physical therapy facilities. Some of the kids in her class stayed there through high school, and other kids, like Sarah, left and went to other programs. We had the reassurance that she could always come back if she needed to.
During the three years she was there, a letter used to come home from the Principal’s Office about once a month or so concerning the death of a child, usually a child in the high school or middle school grades, from their medical condition. The principal would write and explain that the child had passed away, and say “It is always so hard to understand the death of a child.” And offer other words of solace and provide information about the funeral and any support for the family that was needed.
I never imagined Sarah being a dead child when she was at Stephen Knolls. She seemed like a little superstar. Her teachers talked about how bright and able she was, her wonderful smile, how she was going to enter the Augmentative Communication program for kindergarten, all the things she would do, how many friends she had. She had a little friend there, an Ethiopian boy named Tekleab (pronounced Teklay) and she and Teklay liked to hold hands on outings from their wheelchair strollers and were very close. She had birthday parties and outings to the Pumpkin Patch and so forth.
As I was pulling away, I kept hearing the text of the principal, Mrs. Shrewsbury’s, letter in my mind, “It is always so hard to understand the death of a child.” I can’t understand it. Sarah was here, at this school, totally alive. She can’t be gone. The world can’t still be turning.
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Underdog
Yesterday evening I had something of a meltdown and by bedtime I was pretty tearful and upset. We have a shelf in our living room devoted to Sarah’s ashes and the purple urn we selected for them. The ashes aren’t actually in there, they are still in the box that they arrived in, because we are too scared to transfer them. But the purple urn, the cremains box, and a Yarhzeit candle the funeral home provided us (a Jewish tradition) all sit on this special shelf in the living room. Also on this shelf are Sarah’s little plushie of Walter the Farting Dog, keeping her cremains company, as does a small figurine of Stuart the Minion.
Sarah really loved the story of Walter the Farting Dog. It’s an excellent children’s book by William Kotzwinkle. Walter is adopted from the pound and discovered by his new family to be an inveterate farter who is unable to change his ways despite many interventions. He is at risk of being returned to the pound because of his intestinal issues when robbers invade the family home and Walter saves the day by, you guessed it, farting the most toxic fart ever. Sarah loved this story because first of all she loved any discussion of farts and farting, and also I think because it was an underdog story (literally) in which Walter’s deficits bonded him to his family forever and made him special. And it was very funny, and we all loved reading it together. There were several Walter sequels in which Walter similarly saved the day by farting, but none quite packed the punch of the original.
So yesterday I was dusting and arranging our little shelf shrine to Sarah and I saw her Walter Stuffie hanging out with her, and I had a strong wish to read the Walter story again. I went into Sarah’s room and tried to find it. I couldn’t. By late in the evening (by which I mean 7:30) I was going through all her books. I found an old pre-school ‘yearbook’ which I really enjoyed looking at again for a while, and a handmade card that her 4th grade bus buddy, Jennifer, had made for her, but I couldn’t find our copy of Walter the Farting Dog.
Walter’s absence really made me feel very tearful and sad, as if I could not locate Sarah all over again. I was crying by the time I went to bed, feeling like I let Sarah down, and feeling bereft, and wishing I could just find the book and read it again to myself and recapture the good times we had. I also had this strange theory in my mind that Sarah had somehow managed to have taken the book with her as afterlife reading.
Sarah’s preschool yearbook that I found (a little computer printout her teachers put together), had some pictures of her in the preschool pool with her physical therapists. Something about the posture she was in brought back a memory for me of swimming with her at that age in the summertime and holding her and urging her to kick her feet. “If your name is Sarah, kick your feet” I would say. “If your Daddy’s name is Max, kick your feet.” She really enjoyed this game and it got her to exercise her legs. It was a delicious memory of a time when she was still developing and before she began to lose her physical skills.
So I guess I was just a sad sack last night at bedtime, feeling bereft of Sarah, bereft of Walter, and bereft of summertime joys. Max comforted me as best he could and of course we vowed that if we didn’t find our copy of Walter we would just order another one. Sometimes I just wish I could order another go-round of my life again. A do-over. But Amazon does not offer that.
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Fan and Fern
I really haven’t felt much like writing lately, which is a big change from the first three months of the blog, when I felt like I was bursting with creative energy. I have felt down on my writing, that it’s stupid, silly, and First World nonsense about nothing at all. As opposed to the first few months of writing the Blog, when I felt that I was creating something profound and meaningful, possible bestseller material.
I imagined myself submitting excerpts from the Madame Tootsie Bagel blog to a publisher, and getting a publishing contract from a major company, possibly Simon and Schuster. My fantasies extended so far as becoming a minor media celebrity on my first book tour, and reading excerpts in various chic, progressive, non-chain bookstores throughout small cities and towns with liberal arts colleges and good fan-and-fern restaurants with fun menus and interesting, intimate dessert establishments. Possibly Oprah would pick up the book and then my life would change completely, of course. Max and I could set up some sort of foundation in Sarah’s name, and I would retire, and perhaps there would be some sort of lecture or speaking tour. I would be making television appearances, and need some sort of consultant to deal with my hair, which is really impossible, and help me pick out clothes in some sort of Coastal Chic manner. I would be on the Boards of a lot of charities and organizations, and probably travel a great deal and have a chef.
Well. It’s nice to have such a rich fantasy life. I’m not sure why I’m so down on myself right now. I did read an article this morning online about how ants (I think it was ants, but maybe it was flies) who are exposed to other dead ants tend to die more quickly. Maybe just the trauma of dealing with death makes you more depressed, vulnerable, and downcast. Or maybe the live ants just wanted to be with their dead loved ones.
I did take a step yesterday, at least I think it was a step. I found out that there really is an actual organization that gives out Mom Hugs to gay and trans kids at Pride events. It’s called Free Mom Hugs and it’s a 501(c)(3) organization. So I filled out their volunteer application for the chapter in my state. I also found out when the next meeting of Compassionate Friend is in our area. Max and I are going to go to that.
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2006
Well, I had written a really nice post about my life when I was pregnant with Sarah while I was engaged, and getting married, and I was very satisfied with my creation. Then my computer went down when I went to publish it, and the draft reverted to a false start I had about a Google News article concerning a woman who was motivated by grief to lose 25 pounds. Naturally I verbally abused this woman in print for quite a while. But I don’t think I’ll go there again.
I’ve been having a lot of connectivity issues lately with both my home and work computers. Connectivity is of course something of a loaded term. I’m having lots of connectivity issues lately period. I think I am trying, to a certain extent, to connect with other people. I looked up volunteer experiences with gay and trans teenagers in my area, thinking there might be some organization that needed volunteers to provide home-cooked meals or motherly advice and hugs to kids whose parents had rejected them because of their identity. There was one group that said it needed telephone counselors for kids in crisis, but when I clicked on the link, they said they weren’t actually accepting applications right now. I was very disappointed, but then I realized that I hate talking on the phone for a long time, so I probably wouldn’t have been good at that role anyway.
Maybe I can set up a little booth, sort of similar to a lemonade stand, where I can offer free cookies, sandwiches, and motherly hugs to anyone who is having a rough day. I don’t care the reason why. I can also listen to people complain about their in-laws, since I never really had a mother-in-law or father-in-law to speak of, and I’ll make sympathetic noises. I’ll offer advice for educating special needs kids. But really sometimes it’s just about knowing someone is in your corner and doesn’t expect you to be perfect.
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Case Study
I guess the flip side of being empathetic is being oversensitive. I really don’t like using that word, as I have expressed previously, since people are as sensitive as they happen to be. But our triggers that come from past trauma aren’t always rational or productive. Sometimes they hold us back from getting the good things out of life.
When I lived in Cincinnati, I went through a period of doing temp secretarial work in various offices and once I was assigned to Red Cross Headquarters downtown. The work wasn’t particularly exciting, just typing membership information into a word processor, but what was really intriguing were the volunteers who worked in the administrative office where I was located. Many of them appeared to have “issues.” One woman seemed quite ordinary but a little nervous and uptight. On my first day she came up behind my screen as I was entering tabs for Name, Address, and Sex of members in a database. And wait — she had passed out on the floor behind my table. Was she okay? Was she having a seizure? No one seemed at all concerned and everyone kept working except me. Finally my supervisor came over and opened one of (let’s call her Dora’s) eyelids with a fingertip and Dora popped up and went right back to work as if nothing had happened. I was mystified and fascinated.
This sequence of events (fainting, eyelid opening, instant regeneration) happened another two or three times during my first morning at the Red Cross and I finally pulled my supervisor aside and asked if there was something I should know. (Yes, this was nosy and inappropriate by modern ADA and HIPAA standards but in 1988 we were primitives.) She told me that there was a long list of words that made Dora faint if she heard them or saw them in print, including sex, men, Karen Carpenter, anorexia, and a few others I don’t remember. Dora was on disability and volunteered at the Red Cross as a safe environment and they did what they could to protect her from her triggers.
Wow. It must be really hard to go through life like that, I thought, while simultaneously wondering if I could take her to Vienna and publish a Freudian case study about her. Unfortunately I didn’t stay at the Red Cross long enough to uncover the exciting cause of her neurosis. However, in the early 90’s, I was doing some case law research for law school and I came across a sad afternote. Dora had sued her employer (not the Red Cross) under the Americans with Disabilities Act for allowing her co-workers to torment her by using her trigger words to make her faint. What an awful situation.
Well, what does this have to do with Sarah, my life, my current state of mind, my grief? How can I close the circle? I think I am easily triggered to feel excluded, not a part of things, outside the real world. Yet I also have a compulsion to stay away, to isolate myself, to do things alone. To wake up at 4 and go to bed at 7 or 8. How can I wrestle with the more schizoid aspects of my personality which I know are not serving me best? Today is not a day of answers.
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Big Bear
People talk a lot about narcissism and sociopathy these days, and those terms tend to be rather overused. Unlikeable people are described as either narcissists or sociopaths. (Twenty years ago it was borderline personality disorder that took the big hit.) Still, I wonder why there are people in the world, and there seem to be an awful lot of them, who don’t have much empathy. Did something happen to them to make them lose their empathy for other people, or more likely, did they not develop this quality as they were growing up?
Some people seem naturally attuned to other peoples’ feelings and walking in another person’s shoes. For other people this seems to be impossible. They don’t function on the level of feelings at all. Maybe it’s just too painful for them. I remember when I first started dating Max we were sitting at some cafe in DC, on Connecticut Avenue, that had a small number of outdoor tables, enjoying our non-alcoholic beverages, and a homeless man began going from table to table asking for a few coins or dollars. A table near ours was not happy about this matter, and the man’s persistence, and the young men at the table began to punch the homeless man and kick him to get him to go away. I was upset, and scared for the man, and Max began holding my hand. “He’s very drunk and he doesn’t really feel pain” he told me.
I’ve always been a softie, and my mother would tease me a little bit. “Did you manage not to adopt another stray dog today?” But she was secretly a softie too underneath her hard and sometimes disdainful exterior. Once when I was driving with her in Austin we accidentally ran over a squirrel and we pulled over to the side of the road agonizing over what to do. It was possibly still alive and in pain. Was it better to run over it again and put it out of its misery? Or should we let nature take its course?
My Mom had Crohn’s Disease (an inflammation of the colon which is genetic for Jewish people) and would have to take cortisone when it flared up, which made her kind of mentally loopy. When I was about 13, there was a grocery store chain called Big Bear in Austin that ran one of those games where they gave out Bingo tickets whenever you shopped. If you got a Bingo, you could win a prize up to $1,000, which was very good money in the mid-Seventies. We had been collecting Big Bear Bingo tickets for a while.
One night I was home alone with Mom. Dad and my brother had gone somewhere, and I was reading in my room when Mom started insisting we had won the Big Bear $1,000 Bingo. I asked her if I could check the Bingo tickets but she insisted we needed to get into our Volkswagen and go the store right away to claim our prize. So off we went, coincidentally running into Dad and Jon coming home in the Dodge Aspen, and we frantically blew the horn and flashed the lights so that they would follow us to Big Bear.
When we all got to Big Bear in our cars, and Mom announced to the manager we had won, he congratulated us and told us our prize would have to be verified at Big Bear Headquarters in Houston, with the tickets examined under ultraviolet light for tampering. Then he asked to see the tickets. Mom produced them.
Let’s just say they were not the winning tickets. They did not in any way make a Bingo. Mom was just high on cortisone. My brother and I were extremely embarrassed and not at all empathetic at the time. Dad bought us all ice cream bars and we went home.
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The First Year Without Sarah 