• Life Expectancy

    Yesterday I was thinking about a special needs kid who Sarah rode the Camp JCC bus with, and the thought flashed through my mind that this girl would have to ride alone now. Then I remembered that she had died a few months before Sarah. Like Sarah she died in her sleep. This led me to review in my mind all the special needs kids I knew who have died, and then I had to kind of ghoulishly and compulsively Google all the other special needs kids I know for evidence that they are still alive. A couple of kids are not only still alive, they are in college now. Good for them.

    There’s no way to tell which kids will die young, of course. Life expectancy is a big issue when you have a child with disabilities. I remember once when Sarah was about 5 or 6 we were at the pool and I was chatting with another mom who I had just met, and she asked me out of the blue “Do you mind if I ask you what her [Sarah’s] life expectancy is?” I was really flustered, and I said “I really don’t know.” I was very self-conscious after that, because I thought we’d just been having a pleasant conversation about kindergarten placements and so forth while Sarah played in her inflatable turtle, but I guess the whole time she was thinking “Jesus, how long is this kid going to live?”

    My random and nosy Googling for some reason led me to look up a former colleague of mind who I’m Facebook friends with but haven’t heard from in a while and I discovered he died about a month after Sarah, of pancreatic cancer. I was sad. We weren’t close friends but I always liked him. He did a lot of creative writing. I remember once reading a blog post by him about his childhood where he said when he was about seven years old he suddenly had the realization that he was in a school for kids with special needs. (I think he had Asperger’s). I found it very touching. I think I’ll go back and see if I can find it.

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  • Badge

    I kind of cried my way through the Compassionate Friends meeting yesterday. When we arrived at the meeting, we were given personalized badges that were made for us by one of the group leaders who does this sort of thing for the newish members. They are just plastic badges with clips on them, and there’s a picture of Sarah and theb it says on the badge “Elizabeth – Sarah’s Mom.” The same thing for Max with Sarah’s Dad.

    It’s a nice tradition. During the breaks in the meeting, when you walk around and talk to the people you’ve become a bit close to, you can see the faces of the dead children they’ve been discussing on their badges if they choose to wear them and it makes them more real.

    So when they gave us these badges to put on, I looked down on Sarah’s happy face and the words “Sarah’s Mom,” and it just started me off on a crying jag that lasted through most of the meeting. I wasn’t sure if seeing the badge made her seem real to me or more dead to me. I think it was the “Sarah’s Mom” part that set me off the most.

    I just sat and cried, and people near me in the circle passed some of the multiple boxes of kleenex to me. A lot of the discussion was how to cope with grief during the upcoming holidays. One member recommended to tell your family and friends something like ‘It’s okay to talk about Dead Child, I don’t mind.’ Personally, I don’t see that really working out or producing a round of stories about Sarah. Maybe because she was special needs, so many Sarah stories live in Max and my hearts and memories alone.

    Luckily for my emotional state the meeting devolved into a somewhat boring group discussion of whether we should have a group scrapbook with pictures of our kids and whether it should be digital or not. Max and I agreed it wasn’t the best grief group meeting we had been to, but I’m still glad we went. I really need to be active right now. Dr. Z wants to me to get out every day, to walk, to do things outside the house, to talk to people. and try a new anti-depressant.

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  • Trick or Treat

    Trick or Treat

    My mood is pretty poor these days and it makes me not want to inflict myself on an audience. When I first started this blog, I pictured turning it into a book. There would be a beginning, where I was in deep mourning about Sarah, then I would start to feel better, and develop a lot of insights about death and grief, and finally there would be some sort of natural end point to blogging because I had moved on with my life and “found something fulfilling.”

    I don’t think it’s going to work that way. I think I’m just going to continue to have really shitty periods, and then moderately okay periods, and possibly some upbeat periods. This is not going to be like an Afterschool Special where I get over my problem once and for all. There’s just going to be a lot of days where I don’t particularly care if I’m alive or not. Days when I feel very very grouchy and unsettled.

    Have I talked about this before? It all sounds fairly boring and obvious to me. I’m sorry this is turning into such a shitty read. Dr. Z would say that’s my depression talking. Maybe I should call him. Tomorrow is Halloween and I really don’t feel like answering the door to a bunch of kids in costumes and their doting parents. But maybe there’s a chance that Sarah will be somewhere out there among them, somehow. She loved Halloween so much. It would be so nice if she showed up for a little visit.

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  • Runaway Truck

    As more and more time passes since Sarah dies, it makes me feel out of control. When I see that kids born in and around 2006 are turning 17 and 18, I don’t understand how that can be. I feel like I can’t hold on to what was. I can’t keep things constant in my mind. Life starts to feel like it’s running away from me. I’m scared.

    Last night I had the sort of dream I seem to have a lot. I was driving my car from the back seat. I couldn’t stop it, because I couldn’t reach the brakes, and it was out of control. I was trying to steer into an embankment to slow it down.

    I noticed last summer when I took my spontaneous road trip to Cincinnati and I was crossing the Allegheny Mountains that a lot of the long downhill slopes would have a “Runaway Truck” sign pointing to an uphill slope or a grade. It was reassuring to know that there was some pre-planned measure for people whose lives were completely out of control. I wish there were some sort of Runaway Truck measure in my life right now. Maybe some sort of off-ramp where I can just go and process my grief, anger, and grouchiness without hurting myself or others.

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  • Party Pooper

    Yesterday I ended up feeling pretty terrible. All kinds of grouchy and sad at the same time. What do I feel bad about? So many things, from the trivial to the poignant. Ready? Physically, I’m aging into the “grandma” years but I will never be a grandma. I don’t like looking at pictures of myself anymore. Is there a point to going on Weight Watchers, to trying to lose (forever) that ten or fifteen pounds? Is there a point, really, to extending my life as long as possible? For what purpose? What will my “golden years” consist of? And shouldn’t I reach an age and stage of life where I just accept myself?

    Max and I have booked a vacation to Florence in December. We are looking forward to it, and it should be fun and interesting. Although I don’t like pasta, wine, or really Italian eating habits in general, with the very late dinners, I like the concept of visiting Florence and all the art and so forth and the touring. Max and I had a really good time visiting the UK and we should have fun in Italy.

    I’m just afraid that I’m kind of a party pooper lately. Max wanted us to go see Killers of the Flower Moon yesterday, and we had both been looking forward to a movie date, but then I just couldn’t face sitting through a three and a half hour movie. Maybe I’ll get the energy today.

    Sometimes I have to ask myself if Sarah’s death is just a convenient placeholder for my existential ennui. Well, it certainly hasn’t turned me into Ms. Congeniality.

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  • Life Skills

    Surprise! It’s me here blogging again. I did kind of disappear for a minute. I’m not quite sure why. I think I started to feel that this was a chore rather than a pleasure and an outlet. That I couldn’t live up to my early, funnier posts. Like people telling Woody Allen “I really liked when your movies were funny.” Is it weird that back when my grief was the heaviest, I often produced the funniest, most creative posts? That the words just flowed out of me?

    There has been a lot of death just hanging around here, and I’m feeling kind of grouchy and unsettled. My uncle in PIttsburgh is not expected to live much longer. Every time I hear from my Dad I think it’s about Uncle Len. I even went out and bought a dress for his funeral. I guess that’s a little morbid. I also found out through my restless Googling that Sarah’s orthopedic surgeon’s wife died. That made me very sad. Finally, I found out that one of Sarah and my favorite dogs on a dog rescue channel we liked to follow together had died, right around the same time she did. Maybe Tony was there to help her through her transition.

    I was at the mall the other day, shopping for my funeral dress, and I came upon one of the moms from Sarah’s former ballet class. Actually, I came upon a group of students with disabilities, and then I noticed that this woman was one of the aides with them. Some of the students go to the mall to learn how to make small transactions or other “life skills.”

    We said hello to each other, and then she asked me how Sarah was. I had to tell her that Sarah had died in 2022. She was shocked. I was okay doing it, and I didn’t cry. She only had a moment because she was watching her group of kids, so I let her go and walked back to my car.

    These moments when you know there really isn’t any Sarah anymore are still so hard, even after all this time. How do I hold on to her?

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  • Filler

    I don’t like it when I look up a recipe for something I want to cook (Max and I are doing Weight Watchers right now) and the website host presents a long story about the beauty of fall foliage, or how eating butternut squash always reminds her of her friend Claudette, or some such thing. I really don’t care. I just want the recipe, and to know what I have to buy at Aldi or Safeway to make it. Some of these websites do give you a “Skip down to recipe” option so you can gloss over the all the filler that comes with the recipe. I guess if you follow that website maybe the filler is fun to read.

    Lately a lot of stuff in life just feels like filler, and I want to skip over it and just get to the recipe. I care about people, and I have an interest in other people, but people seem generally caught up in very petty concerns. Sometimes I find myself feeling that their concerns are performative, as if they are not really worried about this or that thing with their children or their job, and I have to remind myself that people do worry about other things than death.

    I had a strange moment last night. We were watching the season finale of The Wheel of Time, a kind of cheesy science fiction/fantasy show. There was an epic battle scene. A dog was killed and someone with “second sight” was able to visualize the dog’s soul being pulled up to heaven. For some reason this just had me spellbound. It was as if I were watching Sarah’s demise and I had an intense feeling of deja vu. Yes, that’s how it must have been, I felt in that moment. The next second I realized how ridiculous that was, that I was basically watching a Disney moment, not a visual guide to Sarah’s last moments on earth. It was so strange. I watched it again this morning, that moment, and it didn’t have that gut punch for me.

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  • Flat

    Lately I haven’t felt like writing very much. I haven’t felt depressed, I’ve just felt kind of flat. Many peripheral thoughts are going through my head with no central focus. The federal government may be shutting down Monday. That means waiting and waiting to be unfurloughed and recalled to work. We will be okay, I’m not worried, it’s just annoying not to be able to predict the end date.

    Today is the second anniversary of my mother’s death. Like Sarah, she woke up dead in the morning. I guess I sound very cavalier. I remember that on that day I was going to meet a friend for lunch and my father called me. He told me that my mother had “succumbed” and that “her long ordeal was over.” I knew he meant she had died, but I couldn’t help picturing her clinging to a piece of timber at sea, sort of like Jack clinging to Rose’s wooden plank in Titanic. And gradually losing her grip and succumbing and falling beneath the waves.

    Can you love someone and still feel relieved when they die? I think that’s how I felt when my mother died. She had so many illnesses, and communicating her symptoms had become the primary manifestation of her illnesses. It was exhausting for the family. I felt there was nothing I could do right. She didn’t take pleasure in anything.

    It’s a cold morning. I was looking at travel websites for flights to Italy, thinking about planning the next trip for Max and me. We could go in the early spring, the same time of year we went to the UK. Or we could go during the holidays, try to lift the holiday gloom. Things are better than this time last year. I have to keep telling myself that.

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  • De Novo

    I was re-reading some online articles from Pub Med yesterday about Sarah’s disorder. The first few articles from around 2019 and 2020 that recognized a cohort of kids like her and started using the name Complex Early Onset SPG4 or De Novo Early Onset SPG4. Before that we had only been told she had an unusual presentation, or that her symptoms didn’t really correlate to the presentation of her genetic disorder, which usually affects adults late in life. We went through so many confusing diagnoses before they understood her.

    I do search the internet still, every so often, to see if there have been more articles on her now-defined genetic syndrome, or if NIH is having another conference on the syndrome like they did in the Spring of 2022. I was re-reading an article that came out a little less than a month after she died, on September 14, 2022. I’m pretty sure I’ve read it at least three or four times before, but to my surprise I found a mention of her that had never registered on me. Not by name of course, but it was obvious they were referring to her. The article, which is called

    I do search the internet still, every so often, to see if there have been more articles, or if NIH is having another conference on the syndrome. I didn’t find anything new but I re-read an article that came out a little less than a month after she died. I’m pretty sure I’ve read it at least three or four times before, but to my surprise I found a mention of her that had never registered on me. Not by name of course, but it was obvious they were referring to her. The article, which is called “Early Onset and Severe Complex Hereditary Spastic Paraplegia Caused By De Novo Variants in SPAST” (I’m sure you’re dying to read it) was discussing some of the most severely affected childen studied, said “Similarly, a 16-year-old female patient developed spasticity in infancy associated with poor motor development (never sat unsupported, crawled, or walked) and contractures, segmental dystonia, generalized epilepsy, moderate intellectual disability, and speech regression (at best, spoke a few words but is now non-verbal).”

    I don’t know why I never associated this description with Sarah before or recognized that they were talking about her. She was 16 (or would have been) at publication. And in medical terms, it does describe her. Maybe I glossed over it, or didn’t think of her, because it was so reductive. Saying that, at best, she spoke a few words but is now non-verbal is not how I would ever have described Sarah, although I suppose that she never did really speak in sentences and at the peak of her verbal abilities had a vocabulary of about 200 words. And while we have many pictures of her sitting by herself, I guess she’s always propped against the back of the couch, or in a carseat, or supported in some way. She did walk with a harness or in the pool for a while. Generalized epilepsy sounds really scary, much more than the four or five seizures she had.

    I felt sad yesterday when I realized I had never before recognized Sarah in this little blurb. But this morning I feel like she was hiding in plain sight, waiting to peek out and surprise me. Which would be a Sarah thing to do. Surprise your mommy and laugh.

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  • Lonely Hearts Club

    There’s a consistent message or saying in the “grief world” that the second year is harder than the first. People don’t give too much explanation, they just go around intoning this. Although I haven’t generally found this to be true, last night I was crying a little bit thinking I can no longer look back and check mentally on what Sarah was doing at this time last year. What she wore for the first day of school. Whether she went trick or treating. She was simply dead at this time last year. And it will always be that way. So maybe that’s why the second year is harder than the first.

    When I was a kid, I used to listen obsessively to my parents’ Beatles records, especially Sergeant Pepper’s Lonely Hearts Club Band and Rubber Soul. I sang all the songs and knew the lyrics and dissected them. There was a song “She’s Leaving Home” from Sgt. Pepper. It was a song that scared me and troubled me. A young girl seems to just disappear from her home and her parents forever. The mother says “Daddy, our baby’s gone” during the song. Did the girl leave voluntarily? Was she kidnapped? She simply disappeared. Later I found out Paul McCartney based it on a real-life case in Britain of a teen disappearing, Melanie Coe, who ran off with her boyfriend and was missing for 10 days. This song started playing in my head as I was crying and thinking about Sarah and the potential difficult second year of mourning.

    For some reason my thoughts run to a funny but sad story my Dad told Max and me the other day, about his friend Rich who has a dachshund, Stella. Stella was taken to be spayed but the operation had to be put off because apparently Stella is suffering from a false pregnancy. This is a known medical phenomenon in female dogs where their bodies react as if they are pregnant but there are no pups. It’s just hormones, I guess. We laughed and joked about a baby shower for her, but inside I felt a little bit sad. I guess this is probably just a physical syndrome for dogs, but I imagined poor Stella wanting puppies so badly that her body produced this false pregnancy, and I felt sorry for her. It’s no fun to be so obviously longing for a child.

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