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Doorknocking
Last summer, before Sarah died (B.S.D.), I was surfing the net catching up with various people in my life in my nosy way, and I Googled my law school ex-boyfriend. He was a dual JD/MD degree candidate and very serious about medical school, and I knew he ended up in the Midwest (at the most topnotch residential match for radiology). Around the time Sarah was a toddler and first receiving so many confusing diagnoses, I would reach out to him via email to mediate the radiology wars over interpretation of her MRIs and potential diagnoses du jour, and he would do his best to advise me. But we gradually lost touch like most people except as LinkedIn contacts.
For some reason in July 2022 I gave him a brief shout out on LinkedIn, and I told him I saw a reference on the net to the fact that he and his wife had lost their older son in a tragic accident. I apologized for not conveying my condolences to them sooner. He thanked me and we ended up chatting about our careers, politics, law school gossip; the usual range of subjects. His adolescent son’s death was just a small footnote in our shared e-conversation, but it was also the reason I had reached out. I don’t know if I would have initiated contact if I hadn’t seen a reference to the boy’s death online.
Less than a month after I contacted Mazen on LinkedIn, Sarah woke up dead. I don’t have any definite philosophy of the universe that tells me these events are connected, or that we are all just actors in a predetermined set piece, but it makes me wonder about how the universe tilts and the reason for the connections we make. I hope and believe this connection helped prepare me in some way for what was to come. I know I reached out to Mazen several more times after Sarah died and despite the fact that he’s not at all an emotional guy, I felt I could tell him how crazy and despondent I felt. He was a resource for me.
I remember him telling me that I would have dreams of Sarah knocking at the door and trying to come home. I haven’t had those yet. I’ve had very few dreams of Sarah, maybe because she is on my mind so much during the day. Of course if the real Sarah had been able to walk up to our door and knock or come through, I would have been thrilled to pieces.
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Secret History
I know you’ve all probably been missing my TV recommendations and wondering what we’ve been watching. We did have to take a break from Gomorrah mid-Season 3 because while I had Covid I just couldn’t overcome my mental fog enough to focus on why Genny or Ciro were trying to kill each other in that particular episode or who the villain(ess) du jour was. Max says I always have this issue, Covid or not, but it was especially acute and we agreed to hold off on the series for a couple of weeks after which Max will give me a crash tutorial when we go back.
On my own I watched Scotty and The Secret History of Hollywood on Hulu, which was great, really interesting and well-made, highest possible recommendation. Then I tried watching the new Hoarders on Netflix and found that really triggering. Toward the end of her life, my mother was doing a lot of hoarding, and it was very confusing and upsetting for our family. It was all part of her larger cognitive dysfunction and the physical symptoms that she both overfocused on and refused to pursue testing for.
For many years, my parents lived in two separate apartments either in the same building or within a couple of blocks of each other in New York City. It worked for them. They both needed their space. The last couple of years of my mother’s life, she became more and more garrisoned in her apartment and she would ask for things to be sent to her (clothes, cleaning supplies, small appliances) on an emergency basis, the Amazon boxes for which remained unopened and piled up in her apartment.
She had high blood pressure that she didn’t want to treat because she hated the side effects of medications or just distrusted them, and she was losing her vision as a result. She had Charles Bonnet Syndrome, which happens with the elderly when they lose their sight; the brain fills in missing information from the eyes and you have visual hallucinations, usually of insects and other unpleasant stimuli. Mom complained constantly of bugs in her apartment and bugs crawling on her skin and flying through the air. The super for the building came in countless times to exterminate the non-existent bugs, flush the drain in the kitchen, and repair the screens. She covered everything in her apartment with plastic trash bags to protect her things from bugs which didn’t exist, and collected samples of the “bugs” (lint, hairs, dirt) in jars to prove to the family she wasn’t crazy and this was really happening. Meanwhile, she refused to have cataract surgery that would have helped her to some degree. The worst part was her anger, her intransigence, and her paranoia about anything that would have helped her.
It was an impossible situation and very stressful. My father saw her every day and made sure her basic needs were met although she railed against him constantly. She was smart and still with-it enough to be considered self-managing. She could see through certain ruses, like my taking a jar of “bugs” with me after a visit and telling her I was submitting it to a top entymologist at the University of Maryland who would identify the genus of bugs and write a full report. I think she knew that was BS when I told her that the lab was shut down for Covid and the report would be delayed.
Sarah didn’t see her Grandma Lynn much during those last couple of years, due to Covid and Grandma Lynn’s inability to travel, but she loved her dearly. One of her favorite things was to have Grandma Lynn and Papa Vic visit, or our rare visits to NYC. She knew her grandmother was a bit of a character, but visits from Grandma and Papa meant presents, going out to dinner, and of course lots of attention. Max’s parents were deceased, so my parents were her only living grandparents. I’m so glad she had them.
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Peeps
I’m not the only writer in the family with a strong point of view and a good sense of humor. Sarah liked to write and her writing was characterized by dry whimsical touches that were very funny, along with revelations of what was going on in her head that floored me. She wrote a lot of stories, and biographical pieces too, especially with the help of her tutor, Emily Montgomery, and with her wonderful occupational therapist from middle school, Katie Ablard, who both really ‘got’ her.
Once Sarah and Katie produced a marvelous story/autobiographical pastiche called “Sarah and the Purple Glue Stick,” and I have to share some excerpts here. This story demonstrates how a good writer can riff off of the most mundane concept or stimulus and begin free associating and developing content and relating the notion to her own life. Sarah was such an accomplished writer.
There’s much more to the plot of this story; this is of course just an excerpt. I’m only trying to do it justice here and catch the flavor of it. I see “Purple Glue Stick” as a kind of follow-up to, or perhaps even a raw duology with, an earlier work of Sarah’s that I also love, called White Crayon, about the adventures of another school supply. I’ll save that for another time.
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Shoe Banana
Do people treat cold sores now with prescription medication or just ride them out with home remedies? I’m just asking for a friend. This is one lingering effect of Covid, which I’m mostly over, along with a pesky cough and a totally deranged sleep schedule. I was already going to bed at 8 or 8:30 and getting up at 4:30 or 5 most of the time, but now I’m going to bed around 7 pm and waking up around 3. Last night Max kissed me goodnight (I could still hear the neighbor kids playing outside on the lawn) and said “Try to stay in bed until daylight.” I guess this is getting a little ridiculous.
If Sarah were here I would creep around the first floor of our house and take extra care not to wake her up in her bedroom, which is near my study, where I hang out in the early morning hours, and the living room, where Polly the Beagle and I occasionally crash on the couch for what we call a “Napperoni and Cheese.” Not to be confused with a Nappy Nap, or a Napsicle, or a Naptitude, to doze away the early morning rebound sleepiness.
I know that Sarah is not really in her room anymore but it’s nice to imagine her there in her Stampy pajamas in her Sleep Safe bed with her feeding pump carefully administering her overnight formula and the giant air filter in her room (“the Whooshmaster”) humming soothingly. If she were to call out this early, I would try to go in and re-settle her, reposition her limbs and turn her pillow over or move the blanket off or on her. “It’s still nighttime Sweetie” I would say. She could often be induced to sleep more that way, until she had to wake up to get ready for school around 6 am.
But sometimes she held firm and she wanted to get up with me. Then I would change her and move her into the living room with several of her favorite stuffies (Shoe Banana, her stuffed monkey that she’d had since she was 2; Otto the Minion, her current favorite; Fluffy, her stuffed unicorn and Cousin Fluffy, her other stuffed unicorn, and whoever else she wanted that day). We would both set up in there and she would watch YouTube usually and I would have my laptop out doing work or surfing the net until it was time to wake up Daddy.
When I go into her room now her stuffies seem so lonely and bereft. They had so much fun for so many years. I want to apologize to them for ignoring them and not keeping up with their lives and plot lines. (Shoe Banana even had his own show on YouTube). But they will not be forgotten.
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Clementine
Holidays can really hit differently after you lose a child. I usually think of Passover as the tale of the journey out of Egypt, and Moses receiving the Commandments, and of course evolving into a central figure in Judaism and gaining the movie idol status he now has. The holiday always struck me as upbeat and a win for our team and a feel-good kind of occasion. Moses has also always been a favorite of mine because he has a speech defect that makes him rely on his brother Aaron to be his spokesman. Represent!
But this year I just felt so down about so many aspects of the story. The killing of all the Hebrew babies that leads Moses’ mother to float him down the Nile to the palace to be raised as an Egyptian. The killing of the firstborn babies of the Egyptians which apparently finally breaks Pharoah’s resistance. So much death.
I’m sorry this is turning into Bible Study Hour. I’ve never thought before of the Egyptians as grieving parents, longing for their children, stunned, wondering when and if they were ever returning. It must have made it very difficult to go into battle, and then there was the whole Red Sea thing. Maybe the Red Sea coming and washing everything away was a kind of relief in the circumstances.
There’s always been aspects of the Passover Seder that didn’t speak to me, and aspects that we would leave out as a family, or as friends gathering, or at a college Seder. We would debate around the table. “This part is sexist!” Or “This part is so hopelessly bourgeois!” I come from a Reform Jewish tradition and so did most of my peers. I remember once in college an Iraqi Jew from a much stricter tradition joined our college Seder and he seemed shocked that we would even consider changing or omitting anything in the Seder. It made me realize that my practice of Judaism allowed a lot of freedom for questioning.
After Sarah was born, our practice of Judaism reflected Hanukkah (8 nights of presents!) and going to Seders when they were wheelchair accessible. Some parts of the Seder I tried to protect her from, like having to ask “The Four Questions,” as the youngest child, which she couldn’t do, and the Parable of the Four Sons, a tasteless story about how a father should explain Passover to his “wise,” “wicked,” “simple,” and “nonspeaking” sons. Yeeechhh. There was a great version of this parable I found set to the tune of “Oh My Darling Clementine” which was much less derogatory, but I couldn’t get it to catch on with my extended family. Oh well.
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Clarifications
Family members have been providing feedback on how they are depicted in the blog. My Dad texted the other day to nitpick that he had taught not just Physics at Bard College, but Math as well. So we have updated the Dad Doll in the Blog Store to come with a Math textbook in addition to the Physics textbook he carries (you can still order his 1959 Fiat with suicide doors in limited edition only). Sorry, no back orders.
Meanwhile Max chimed in last night to say that he had caught up with the blog and he also had a quibble. Seems I’m making him out to be too cheerful, too optimistic, and he just doesn’t like that. He believes I’m not capturing his dark and curmudgeonly nature and I’m presenting him as a sort of Pollyanna type who exists to cheer me on. I asked for an example and he pointed out the anecdote from our hotel in Scotland, where I said staying in a former maternity hospital gave vibes of women in pain, and he said it gave vibes of happy new mothers. “But that really happened,” I said! “You are making me out to be some kind of look-on-the-bright-side type!” he complained. Heaven forbid.
So our Max Model in our Blog Store now comes with Extra Cantakerousness, Bile, and Ill-Humor at NO EXTRA COST to you, the reader! That supportive guy and great dad you’ve grown to love in our pages will also feature a Cloak of Irascibility from now on. Use code FLATULENT for savings at checkout.
I wonder if Augusten Burroughs has these sort of problems.
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Dreamhouse
This morning on the BBC News an Australian kidnapper was sentenced to jail for abducting a little girl from a campsite and holding her hostage for some time before she was rescued from a locked bedroom in his house. I couldn’t help but briefly wonder if Sarah might not be found in this lair as well and liberated and returned to us. The article said that the captor wore headphones to drown out the sound of the girl crying for her mother. This is a horrible detail.
I have to remind myself that Sarah has not been abducted and she is not being prevented from returning to me. Wherever she is, she is whole and happy and well-looked after.
When Sarah was doing therapeutic riding and ballet a few years ago, before Covid, there were three girls around the same age in her riding group on Sundays. It was Sarah, Leila, and Frida. Each girl used a wheelchair and all loved horses. Leila’s dad Massoud was raising her alone after her mom, Nahid, who was one of my best friends for several years, died of breast cancer very quickly and suddenly. Massoud and I became good friends for a few years then too.
Massoud would always talk about how Leila and Sarah, and Frida too, needed to all live together in a big house when they grew up, and how we needed to plan for that and get that set up. I agreed it was a great idea. I enjoyed our co-fantasy of Sarah and Leila and Frida as grown-up gals on the go, fashionistas with a hectic social calendar, sort of an ADA-friendly version of the Mystery Date board game I used to play with my friends in the 70’s.
Our riding school was beset by a series of management woes for a couple of years, and Sarah also had major back surgery when she was 10 to straighten a more than 90-degree curve in her spine that kept her from riding for quite a while. The combination of Covid and only sporadic therapeutic riding led us to lose touch with Massoud and Leila and Mary and Frida after about 2019. I heard reports from our mutual physical therapist about Leila but that was about it. Massoud dropped out of Facebook too.
I still love the idea of Sarah, Leila, and Frida living together in their Barbie Dreamhouse. Having adventures and epic pool parties. Forever.
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Empty Nest
A long-term friend who I rarely see but am fond of may have mistexted me the other night, thinking she was reaching out to someone else. She wrote that her son was very upset with college rejection letters (it’s very tough for the kids these days from what I can see) and was lashing out at her. He had first hidden the rejections and was now blaming her for his lack of choices with typical adolescent logic. She was having a hard time not giving it back to him when he castigated her.
Why do I think this was a “butt text” or not intended for me? She didn’t write back to me when I responded, and so I thought she might have intended it for a closer, more up-to-date friend, or, let’s put it out there, not the mother of a dead child. I was actually happy to get her message because it made me feel like a “real mom” with mom insights to share on those pesky kid issues. Part of the club again.
Of course, she may have just had a lot on her plate and not written back for that reason. Later, she posted on Facebook that her son will attend ZYX College this fall. It’s the college that my mother graduated from and at which my father later was teaching Physics when they met and started dating, so I was tickled to see that he is going there.
I can’t remember, and have no clear idea, why I did not apply at ZYX college myself. I remember them recruiting me heavily with phone calls and mailings and requests to come and visit during my senior year in high school but it almost created a revulsion in me, as if my parents’ contacts in the NXIVM cult were reaching out to suck me into a sordid world of branding, brainwashing, and bohemia. I felt unable to compete with my mother as a teenager (she was very beautiful) and my parents’ origin story overwhelmed me. So I struck out for the Midwest and Quaker values.
A lot of my friends are around the same age as me right now, and have children leaving home for college or moving out of the house. They are in “empty nest” mode. Which means, like me, they are searching for a new identity, a new plan for their lives. I can see that this is a type of grief too, even if the child is still alive and well. Even if it’s what you wanted for your child all along.
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Eye Can Fly
Last night I dreamed that I was invited to the final IEP meeting for Angela, the daughter of the We Speak PODD family, that I spoke of who passed away yesterday. It was held in an airplane flying through the clouds. My being there made about as much sense as any IEP meeting. If you are unfamiliar with IEPs (Individualized Education Plans), these are the documents that the school is supposed to develop, with your input as part of “the team,” about accommodations that will be funded and provided for your child’s education, placement, etc.
Along the way of raising Sarah, as I met many other special needs parents frustrated with schooling and IEP issues (you might remember my post about Muchlovedschool), I would occasionally hear them say something like “This would be so much easier if Clive/Portia were severely disabled/using a wheelchair like Sarah. Then the school district would give us whatever we need.” I was stunned. Negotiating with the school district over Sarah’s needs was my second job and it was intensely difficult.
We had finally bit the bullet and paid for Sarah to have her own Prentke-Romich Accent 1400 with Unity and NuEye eyegaze tracking at the end of Fourth Grade because the situation with the school district had become untenable. This device (like her power chair) cost more than our family car. Its purchase symbolized my dropping the rope on a six-year battle with the school district that began when Sarah was in pre-school and was given her first AAC device, called a Vantage Vanguard. She did well with it and loved using it with the limited hand and finger pointing she was able to accomplish. When Sarah was about to graduate from pre-school, the technology surged forward and a couple of manufacturers began offering “eye gaze” technology where you activate the cells of the device by training your eyes on them for an interval of time. Sarah’s preschool teacher, Ms. Skelly, was wonderfully pro-active and asked the MyTobii brand representative to trial the product in her class for Sarah and another child. Sarah loved using it and did well with it. I remember at that age, she was primarily playing games on the device, using her eyes to move a little guy through a house, find the bathroom, sit him on the potty, make a fart sound, (gales of laughter from Sarah).
There was agreement with the school district that Sarah would use eye gaze technology in the fall when starting her placement in the AAC kindergarten. However, when she started, the eyegaze system that was in place for her was not the MyTobii. It came from a company called Dynavox to be used with their devices. Sarah really had a hard time with the Dynavox eyegaze. It was physically uncomfortable for her, and it took us a while to understand that she was also now learning a new language completely different from what she had mastered already. Her Vantage Vanguard had presented language differently than this Dynavox Dynamo did. So it was like expecting someone to order from a menu in Greek, and also holding the menu very far away from them. She still absolutely loved Kindergarten, which shows you how much this kid wanted to succeed. But she was having a lot of difficulties learning to read, as you might guess.
At the end of her first year of Kindergarten, at the IEP meeting, the team approached us and said that they wanted to try a new approach with Sarah they called
partner-assisted scanning. They wanted to move away from “high tech” and find low tech solutions for Sarah’s problems. Basically, they came up with a plan to present information not via AAC at all but via visual choices. Do you want this (right hand)? or do you want that (left hand)? Never mind what your own thoughts are or if you aren’t interested in either choice.Real partner-assisted auditory scanning is more sophisticated than this and involves more controls to ensure than the aide is not simply imposing her or his will on the nonverbal subject. The bugaboo of partner-assisted scanning haunted us for several years. Finally around 3rd Grade and our miserable year at Muchlovedschool we began to wisen up and toughen up and we didn’t want Sarah caught in the crossfire anymore of which communication program would be funded for her. So we trialed her talkers directly from the manufacturers and worked with her tutors and AAC specialists to choose the best possible language and platform for her success. That language was Unity, which was loaded on her Accent 1400 device and accessed with NuEye eyegaze. Of course, most important were the games loaded on there. One of Sarah’s favorites was Eye Can Fly, where she flew an airplane around with her eyes. Which makes me think once again about Angela’s final IEP meeting for her soul, held aboard an airplane. I’m honored to be included.
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We Speak PODD
I’m determined to test negative today for COVID so I can go out grocery shopping and get stuff together for Passover. Which really disgusts me because I actually can’t stand those “mind over matter” memes and tropes about illness and disability. For example, there has been a lot of garbage lately about Jeremy Renner’s snowplow accident and how he “chose to survive,” which really is piffle. Do the people who don’t survive somehow not make the right choices and that’s why they end up dead? Did Christopher Reeve somehow not have as much will power and gritty determination and shiny white teeth as Jeremy? Of course not. Illness and disability are not choices.
All of this falls into the category of “inspiration porn,” which has always gotten under my skin. The idea that there was something inherently touching or inspiring about Sarah or other disabled kids and their families simply going about our daily lives was annoying and baffling. The maddening “Welcome to Holland” prose poem that is often posted in environments for special needs children, about how life with a disabled child is just like your plane landing in the Netherlands rather than Italy, and once you adjust to the re-routing everything is wonderful. More like Welcome to Bratislava. Well, all of this sounds very sour, and our life with Sarah was anything but.
I’ve been thinking a lot in the last few days of an update from a website/YouTube channel, We Speak PODD, that I followed very closely when Sarah was really in the thick of the Augmentative and Alternative Communication push. The family from WSP were such role models. Four disabled children used AAC devices (“talkers”) and their channel demonstrated constant modeling by the parents and incorporation of their talkers (or boards) into multiple environments. They were just so brilliant and diligent about AAC.
The other day, the WSP mom posted that one of the girls, Angela, who I think was around Sarah’s age, was in hospice care at home. She also revealed that she (the mom) had had a stroke. I believe that three of the children who were communicating when I watched the videos have now died along with the mom’s birth son, who died of a mitochondrial disorder in 2009. I’m not positive about that statistic.
I would like to be able to say that I am able (that we are able) to love again, to have more special needs children in our hearts and in our home, to possibly adopt or foster another child with severe special needs but I just don’t know. To go through this kind of loss again would be torture. And yet a part of me longs to to love again with that intensity.
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The First Year Without Sarah 