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The Best of Life
When I was in Fifth Grade and we finished our work early, we could look at various books or work on projects in the classroom by ourselves. I like to look at The Best of Life, the old Life Magazine photo compilation. There were a lot of photos I looked at many times, but one that always drew me in and captured my attention was of a Japanese mother and her daughter. They were in a traditional Japanese bath together. The daughter was very affected by an illness that distorted her limbs and the mother was holding her very tenderly and bathing her.
I asked my teacher what was wrong with the girl and I think — I don’t quite remember, but I think – she told me the girl had cerebral palsy. I know now as a grown-up that’s not true. The girl, Tomoko, had a form of mercury poisoning called Minimata Disease and the photo, Tomoko and Mother in the Bath, was published and became famous in part to bring more attention to this illness, which it did. Tomoko died at age 21.
I was so struck by this photo as a fifth grader, not only because of Tomoko’s illness, but because of the love her mother so clearly had for her. She looked so tender. I feel that now too. The pleasure of holding your child’s body. The soft skin. The warmth of the water.
I don’t think I’ll put the photo with the post because apparently Tomoko’s father wanted it withdrawn from publication. He said he felt it had been too much circulated and exploited and Tomoko deserved to rest in peace. I can understand his feeling that way.
Did I have a presentiment about my future, there in my Fifth Grade classroom? Is that why I liked to look at this photo? Or did I just like the intense maternal love expressed in it? Maybe I just liked looking at “deformed” people? Who knows.
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Open House
Now that it’s the first week of July, we are almost practically about to be on the cusp of the first anniversary of Sarah’s death on August 18th of last year. It seems like things are getting more depressing in some ways the closer we get to the anniversary, which makes me think of the way everyone in the Grief Industrial Complex always warns you “The second year is harder than the first.” I didn’t really understand this message six months ago, it just seemed like the way other parents would tell me that Sarah was happy and compliant now — but wait until she turns 3! She’ll be a three-nager! It will be awful!
I guess maybe the second year is harder than the first because of the distance you start to feel from the event, the fact that your child’s death isn’t so shocking anymore, just a wound you carry forever. But it’s a fact of life and you have to live with it like any other. What shall we do this weekend, and Sarah is dead. The Supreme Court overturned affirmative action, and Sarah is dead. The car needs gas, and Sarah is dead.
Yesterday Max and I want to a small gathering in our neighborhood in the wake of a distressing event. A few days ago our neighborhood awoke to find that multiple Pride Flags and Ukraine support flags and other liberal lawn signs had been pulled down, destroyed, or burned, and someone scribbled “USSR” on some of them. This was weird and shocking and the news flashed across our multiple neighborhood listservs. There was a police investigation and many other neighbors, including us, put up Pride Flags and more lawn signs in response. So yesterday, a neighbor had an open house for the neighborhood just so we could bond and discuss our communal experience, which was a nice idea. Max and I went and met a lot of people we only know by sight or by dog.
Max and I spent time talking to an ex-nun, Marge, who was there with her partner, Carol. She was very easy to talk to. She asked a few questions about our lives which inevitably led to Sarah and we told her our daughter had died. We managed to get through a brief rendition of the story without crying. I didn’t run out of the room or collapse in tears. It was a social conversation. I felt proud of us but also a little strange. Marge hugged us both, which felt good.
I hope I can continue to have low-key, social conversations about Sarah’s death. I think it’s good for me to be able to discuss her death calmly, in just a few pre-packaged sentences. Yes, we had a daughter, she died at the age of 16. She had a rare genetic disorder. It happened last year. Her name was Sarah.
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Walk of Shame
I realize yesterday’s post was dark and fairly ghoulish. I’m sorry to have offended or crossed the boundaries of good taste. Sometimes I do feel very bad about myself. I guess I tend to think that if Sarah died at 16, that’s just a prima facie case (as we say in the law) that we must have been lousy parents doing a crappy job. That we are bad and guilty people who deserve to be punished somehow and shouldn’t be trusted ever again. That especially I, as the mother, should have known something was wrong with my child, always. A mother should not leave her child, and I did and she died. Just like that woman (in Florida probably?) who left her baby for 10 days to party and go on vacation, and the baby died. I left Sarah, and she was like a baby in so many ways. Sometimes I wish I could just be arrested and go to jail.
These are all my grand overarching guilty themes, sort of the structure of this opera of guilt and shame. Then there are specific arias that flash through my mind (sorry, I could probably come up with a better metaphor if I actually played a musical instrument, but I don’t. That’s a long story for another day.) The way Sarah’s toes had begun to contract and bend under her feet. The way that she was becoming inclined to skin irritations and skin pressure sores during the Pandemic because she sat so much, either in her bed or her comfy chair. The way that she wasn’t getting regular physical therapy so much since the Pandemic began. The way we weren’t making her wear her AFO’s. All of these things made me feel like a BAD MOM (BM).
The anxiety of being a BM really makes it hard to feel good about myself and want to be around people. Peoples’ natural response when they hear this stuff is to rush to reassure me that I was a great mother, so attentive, loved Sarah so much, devoted to her, blah blah blah. That doesn’t help, unfortunately. It just creates a dissonance between what’s inside my head and the rest of the world.
I remember the summer I worked as a summer associate for a big law firm before my third year of law school. For some reason the gods smiled kindly on me that summer. I was considered the star summer associate and received top reviews on my research and memo assignments and so forth.
I stayed in the firm for a long summer, like May through August, because I needed the money. Most of the other summer associates had come and gone and my mentor in the firm, a third or fourth year associate, would say to me “You’ve got them all believing in you. You’ve got them fooled. Now is the time to make your exit and go.” He was only joking with me and teasing me a bit, but I felt he was fundamentally right. My success was some sort of well-managed act on my part, and I risked exposure. I was relieved to go when I finally did, and still have them thinking well of me.
I know a lot of people feel like imposters, and that many people have a hard time accepting praise too. Is there a group of people who feel like, if only they could atone and do some sort of Circe-style Walk of Shame (but with clothing optional), they would feel better about themselves as people? Maybe I should look on Meet-Up.
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Cancer
Max and I have start re-watching “Breaking Bad.” We are on the first season where Walter has cancer and is desperate to try to find a way to pay for treatment and also leave his family financially secure if he dies. As we watched scenes of Walter in chemo and radiation clinics, getting his doses of horrible treatments to fight the cancer, I started to have strange fantasies like, why can’t this be me?
I started wondering why people who have families and children have to suffer through radiation and chemo and someone like me, who really has nothing to live for, and has very good health insurance, is healthy. I don’t wish to have cancer, but I feel like finding a source of all the pain inside me would be such a huge relief. An oncologist or radiologist could show me a scan or xray and say “Look at this dark area. That is where the mass/tumor/bad cells are. We have to eradicate them, and we will use radiation, chemo, gamma knife surgery, and frozen fantods.”
I would be very, very sick as a result of all this treatment of “the dark area,” vomiting a lot and having my hair fall out and the usual reactions to cancer treatment. In some fantasies, I don’t make it, and I can be reunited with Sarah. In other fantasies, I do pull through after a lot of treatment, my body wracked and wretchedly thin, and my appearance forever scarred, but purged of this horribleness.
Yes, this is a pretty sick and sinister fantasy, and I also want to apologize to anyone who actually has cancer, or their relatives. My dad had to have radiation for prostate cancer, and my sister-in-law many years ago had Hodgkins (or was it non-Hodgkins?) disease. So my somatic fantasies make me feel pretty guilty and twisted. Of course, people don’t get cancer because they are bad people who have done bad things.
I just would like to find a way to be clean again somehow, to feel like I could serve my jail time or pay my pennance or have my badness removed. When I express this feeling, the response is always “You have nothing to feel guilty about! You were such a good mother!” But I don’t feel like a good mother. I feel like a mother to a child who died in the night when I wasn’t there.
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Balance
It’s 3:16, I’m up, and mulling. The dog woke me up, but I’ve been waking her up early so much I can’t really blame her. I was having a dream about being in a car rolling down our street with the emergency brake not working. (Do people even use emergency brakes anymore? Do they come in cars at all? Probably not.) At the same time, I was talking to some shadowy figure in the neighborhood about his/her pediatrician, and this person was telling me everyone in the neighborhood used Pediatrician X.
This dream seems to be possibly related to yesterday, when Kennedy-Krieger responded to my email about therapeutic foster care and invited us to an informational seminar in mid-July on Zoom. I gave our names and the spokesperson said she would send us a link. No commitment on our part, just an informational meeting about what it means to be foster parents to kids receiving care at Kennedy-Krieger, like Sarah did almost all her life.
But nevertheless Max and I were almost immediately anxious. “You haven’t actually signed up for the program or anything, have you?” Max asked me. “Sure, there are conjoined twins arriving by medical taxi in the next fifteen minutes” I said. Both of us are scared of moving forward, scared of change. Scared to be ourselves.
It seems like I keep returning to the Grief Group as a metaphor for rejection, exclusion, for some fundamental hurt. The feeling that once I relax and am myself, and express some real feelings, I am immediately rejected and ejected.
I remember when we were actually members of the group, during one meeting I was talking about Sarah, and crying a bit. One woman in the Group responded to me “You look very pretty when you cry. That’s unusual. Most people don’t look pretty when they cry. I just wanted you to know that.” I immediately said “Oh thank you, what a nice compliment.” But I remember thinking, “Is that the point, for me to look pretty right now?” Because I felt, and feel, ugly, ashamed, horrible, raw, flayed, toxic, and falling apart.
I can’t look pretty or be pretty for people right now. I just can’t do it. Part of me is thinking it’s a really bad idea for me to be a foster mother, or to be around people at all right now. But another part of me wants it so badly. I don’t know what the balance is.
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Viactiv
Max put some videos on my computer that he had of Sarah. They are mostly of her as a very small child. Our neurogeneticist used to ask for videos sometimes of Sarah doing this or that thing, so he could present Sarah at grand rounds at Kennedy-Krieger. We were not big camera and video parents. We were mostly lifting and moving Sarah a lot and there wasn’t a lot of time for photos and videos. We don’t have a lot of pictures of the three of us together as a family.
So Max put on one video of Sarah I haven’t seen or thought about in a long time, when she was about 2 or 2 and a half. She used to like to play with my container of Viactiv Calcium Chews that I was taking as a supplement at the time. They were wrapped in silver foil and came in a purple cardboard tin. She liked to spill all the chews out of the tin and then put them back in and take them out, and put them back in. This is probably a skill for a much younger baby, maybe six or nine months I’m guessing, enjoying emptying a container and filling it again. But she was loving it and at that time she still had a good pincer grasp which is what I believe Dr. Fatemi wanted to capture on film. There she is proudly playing with her chews, very much aware and happy that she is being filmed. At certain points Max pops a bite of pancake into her mouth to remind her that the point is eating breakfast, not playing with the Viactiv chews.
Sarah never had a bit of stage fright or shyness about having her picture taken until she was an adolescent. I remember when she had her first ballet recital with Music and Motion, her assisted therapeutic ballet class. She was five at the time. At the beginning of the recital, the kids made their entrance into the studio and some of them seemed taken aback when they saw that there was an audience of parents and friends sitting on folding chairs. A few kids looked panicked. Sarah positively beamed. She broke out in a huge smile. She was being carried by her teenage helper and she reminded me of Cher being brought onstage for an encore. It was a little embarrassing.
I loved her joie de vivre so much. It was so effortless and really quite amazing. I remember before we had a diagnosis for Sarah, the early years when we were still on the hunt for what we thought was a metabolic disorder, Dr. Fatemi said he had met a patient with a very similar profile to Sarah, a little boy who was also unable to walk or talk but smart and “always very, very, happy.” Can we get together with the family, maybe have a play date? I asked. Unfortunately, they were visiting Kennedy-Krieger from Saudi Arabia, so a play date was not possible. I hope their boy is doing well.
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Talks
Since I got back from my road trip, Max and I have been talking more, hanging out more, and trying to connect more. We had a couple of intense telephone conversations while I was on the road, and I registered some issues with him that have been bothering me. Like his tendency to tell me “Sarah wouldn’t want you to cry” when I’m feeling tearful and griefy. It’s true that Sarah didn’t like to see me get upset and she very much liked to see happy smiling faces around her, but telling me this isn’t helpful when I’m sobbing. So I told him not to do that anymore and he said he wouldn’t.
Max and I have also talked about having a foster child come live with us. We haven’t talked about this idea in quite a while, since right after Sarah died, but it’s been a common thread in my fantasy life. I usually fantasize about fostering a trans or gay kid who was thrown out of their home, but Max thinks we should stick to kids with disabilities since we have a proven track record there. I had a dream a few weeks ago with Sarah telling me that she didn’t want anyone else living in her bedroom, but I thought maybe a kid would like to live in the spare bedroom on the second floor of our house. It’s a small bedroom (now being used for my clothes) but the child could be close to us which might be reassuring.
On the other hand, we might be turned down as foster parents if we try. Perhaps we would be seen as too near to Sarah’s death, and just doing this to try to compensate for our grief. I feel like it might be a Catch-22, that if we were honest and open about ourselves and all our motivations, we would be rejected as wanting to be foster parents in order to fill up the space that Sarah has left behind. Sort of like we were thrown out of the Grief Group for being open and honest about our feelings.
Doesn’t everyone has mixed motives for becoming a parent, some selfish, some altruistic, some whatever? I feel like raising Sarah healed a lot of my anger and angst with my own parents about my own upbringing. Raising her made me realize my parents weren’t always acting deliberately in stressful situations, just doing the best they could, most of the time, while also juggling work and their parents and their inner conflicts.
I guess this is an issue to be researched carefully and slowly. Max and I joked about going down to a showroom or looking at a catalogue and picking out which kid we wanted, but it’s obviously not like that. There would probably be background checks and exams and certifications in CPR and so forth. Well, we did take a number of classes before Sarah arrived. Childbirth and Baby Care. Lots to mull over.
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Disappearances
Both the Madame Tootsie Bagel Blog and I took an impromptu hiatus for the last couple of days. I’m sorry if you logged on and thought we had disappeared. Well, we kind of did. On Friday afternoon I had an impulse to get into the car and start driving out to the Midwest. I wanted to go back to Cincinnati, where I lived for four years after college and haven’t been back to since the early 90’s. I wanted to see it again, to see the places I had lived, and my old neighborhood. And I wanted to see my old friend Laura, who I hadn’t heard from since shortly after Sarah died. I was worried that something had happened to her. Because these days, if I don’t hear from someone, I have a fear that they are dying or already dead.
Yes, I could have searched for Laura’s email and telephone number, written her a letter saying “Please call me now” or some such thing, but my choice was to simply get in the car and drive across Western Maryland, a little bit of Pennsylvania, West Virginia, and all of Ohio. It’s at least a very nice drive, with the Alleghenies and no toll roads and no traffic jams to speak of and very few speed traps. Not like the East Coast at all.
My behavior might have had something to do with the fact that Max was off at an AA meeting and then went out for Chinese food with his AA friends, and I was feeling lonely and bored and not very happy. I didn’t want to face another weekend sitting around being the Documentary Queen. As I say that, I hear my mother’s voice in my head: Why aren’t you getting out? Why aren’t you getting together with friends? Why aren’t you calling people up and meeting them? Because I’m not, Mom.
Anyway. Car. Westward direction. I did stop for the night at a Best Western in Bentleyville PA, which was nice, other than the billboards asking me to choose between Heaven and Hell, which I thought were a bit unnecessary. I got to Cincinnati on Saturday around 10 a.m. and drove around. The city was pretty quiet, maybe because the students are gone, and I looked at the old Victorian house where Laura and I were once roommates. Then I looked at the little apartment building I lived in by myself and with a boyfriend. I walked around and ate a strawberry Graeter’s ice cream cone, which made the whole trip worthwhile. I drove over to try to find Laura at the address I had for her and she wasn’t home. She wasn’t at the library where she used to work either. I emailed her a message. I hung around a few more hours seeing a few things and then I decided it was time to go home. I missed Max and Polly and this really wasn’t the place for me. I also felt like Sarah wasn’t with me at all.
So I started the drive back East. (I still hadn’t heard anything back from Laura). I drove back again across flat Ohio and then the Alleghenies and I got home early Sunday morning after stopping again overnight, this time in Hopwell, Pennsylvania. Max and Polly and I were glad to be reunited. Max and I promised each other to plan more things, to do more things, to try to have more fun and lift each other up more and perhaps find a personal grief counselor.
My Dad called, concerned about my impromptu road trip. He said it reminded him of a couple of other spontaneous travels I’ve undertaken. Once five or six years ago, Max and I had a fight and I jumped into the car and drove to NYC and spent the day with my parents. The other time, I was 16 and on my way to school and decided on an impromptu basis to go and visit my brother at Yale via Amtrak. I guess sometimes I just need to get away, now.
I did hear from Laura on Sunday and she was sorry she hadn’t seen the message I sent her on Facebook on Saturday. She and her husband had been on a garden tour on Saturday. I was really glad to hear from her and told her I had a phobia about people I hadn’t heard from being dead. She emailed me a selfie and said she was definitely okay. She sent her phone number and said we should talk and she knew I was still processing Sarah’s death. I felt really relieved.
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Fireflies
As I’ve talked about before, I feel like I’ve lost interest in a lot of things I used to do. Many things that used to bring me pleasure or frame my day just don’t anymore. Reading the newspaper. Doing the crossword. Reading a local parenting and chat website that I’ve been looking at all of Sarah’s life, and even before she was born. I just don’t get the same feeling of wanting to join in, or tick these items off my daily list.
Yesterday I did something I probably shouldn’t have done, but it cheered me up and gave me that little feeling of je ne sais quoi that has been lacking in my life lately. That zing of creativity and mild wickedness. I created a troll post on my local parenting and chat website. Not a mean or nasty post, but a fake post designed to draw responses and a bit of controversy. Troll posts happens a lot on that website because people post anonymously. The obvious trolls are shut down immediately and the pervs trolling to talk about kids and sex and so forth. You really have to set up a good troll post to ignite affronted responses but still remain in the realm of sanity. (I TRULY have not done this very often, but as you may realize by now, I have a fertile imagination.)
So I trolled as a mom whose daughter had an extreme fear of insects that we were trying to manage, but who wanted recommendations for how to kill all fireflies (and other insects) on her lawn for the entire summer in order to cater to the phobia. You can see how this would piss people off, since it involves the extermination of “beloved fireflies” as a number of respondents put it. I received quite a few screeds on the role of insects, pollinators, ecosystems, dangers of chemicals, cancer risks (all of which I agree with). I really stirred the shit pot, all in the Lawn and Garden Forum, which is typically rather placid.
So I really enjoyed this. I’m not sure quite why. Was it the fantasy of having a daughter with extreme needs again? Was it just the way I was cracking myself up at reading posts from wrought-up defenders of the Earth over a non-existent problem, begging me not to sterilize my lawn? Was it the whole idiotic scenario I had invented? Am I just deeply immature? Probably.
I don’t think I’ll make a habit of doing this but as I said, it brought me an undeniable feeling of zing and energy, which I guess is why trolls troll, pretty much. It also gave me a feeling of belonging again on that website. I was a mother again, albeit a screwball mother doing something preposterous to protect her child. I’m not sure where else to belong right now.
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Wish Trip
Yesterday was the first day of summer which brings us back to the season when Sarah died. The anniversary of her death is less than two months away. Today is June 22nd and her funeral was held on August 22nd last year. It was actually pretty cold and rainy yesterday, not summer weather at all, and I was chilly as I ventured to Target and to the mall to shop for a few birthday gifts for Max. His birthday comes very close after Fathers’ Day. But on the other hand, he really takes a hit in winter time with Hannukah, Christmas, our anniversary, my birthday, Valentines’ Day, and Sarah’s birthday coming in rapid fire succession.
Sarah expected each holiday to be celebrated to the hilt with balloons, cards, and lots of presents. We satisfied her whim. Perhaps it was a little much. But as a fellow special needs parent once said to me, children with disabilities like ours have such hard lives. There’s so much they can’t participate in. Why shouldn’t we spoil them as much as we can?
I think sometimes the outside world sees the Wish Trips to Disney, the handicapped parking spaces, the cutting the lines, the aides in school, the IEPs, the guaranteed movie theater seats, and so forth, and thinks that these kids (and their families) somehow have it easy. I know there was resentment sometimes when we asked people to move out of handicapped seats or parking spaces. There was definitely some resentment and astonishment when Sarah was invited to repeat kindergarten by the school district (story for another day) because many, many parents in our school district wanted but did not receive an extra year of kindergarten to help “mature” their kids.
When we were invited to apply for our Wish Trip in 2016 by Make-A-Wish, and it was granted, I had to reassure people that no, Sarah was not immediately terminally ill. I did not reveal that she had a life-limiting illness and her life span was unknown. Why? I did not want to sound dramatic. I did not want her life turning into a Facebook meme, and having people post “I’ll pray for you” and asking for updates and so forth. She was very much alive, vibrant and happy in 2016. She was very much alive, vibrant and happy up until she died. She was probably in more pain in the last few years of her life, but she wasn’t dying. She was living.
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The First Year Without Sarah 