• Paslovitch

    Paslovitch

    Yesterday was another fog for me, but I did wake up briefly from my Covid Nap to check in on whether Max was making any progress obtaining Paxlovid for himself. For some reason, actually I have no earthly idea why, we are referring to Paxlovid as Paslovitch, as if the anti-viral drug were a Soviet-era emigree or chess master or minor composer.

    I immediately sought out Paslovitch when I tested positive for Covid-19, but Max is much more skeptical of his credentials. He views Paslovitch as arriviste and a bit of a bounder, perhaps even moving in anarchist circles. I told Max that in New York City, (according to my brother), Paslovitch is automatically dispatched to your home by bicycle messenger, you don’t even have to go out to pick him up. Max was far from impressed by Paslovitch’s Manhattan social standing.

    Paslovitch is just one of many imaginary characters who have lived in or passed through our house over the years. There’s Mr. Dumas, my Ninth Grade math teacher, who lives permanently in the basement. He was part of Sarah’s bedtime/medication routine for years. He was hard-of-hearing (let’s just call it deaf), and he was a throwback to my pre-compulsive era when I tuned out a lot in school. To Sarah’s delight, Mr. Dumas would badger me about assignments not done, and tests not made up. “Ms. B–! Ms B~~!” Max would impersonate, in a voice somewhere between Smeagol and Miss Piggy. “I have not received your Algebra homework! Where is your Algebra homework?” “I’m not turning in my homework from Ninth Grade, Mr. Dumas! Go away!” Sarah loved this routine of me foiling the crusty math teacher, and his skulking back to the basement to wait one more day for my undone homework.

    What finally made me ‘get it together’ academically? My first year of college/university was, frankly, a bit of a shit show, personally and emotionally. I had not gotten very good grades in high school and was lucky I had been accepted to one good college. I was very young, newly 17, since it was the tail end of an era in which kids were pushed to succeed at the earliest age possible instead of being given ‘the gift of time’ the way they are now, which makes so much sense.

    At any rate the fall I left for Earlham, my parents had sold our family house, and then told us they were separating about 2 weeks before I left for school and each parent moved into his or her own small apartment. I don’t remember feeling much of anything at all although now I feel tremendous pain for myself, and I think of how carefully I would have prepared Sarah for any kind of similar change in her life.

    That first year at school I had a series of health issues and a bad depression. I had come to school thinking I wanted to study Japanese language and culture but I decided that wasn’t for me. I started a Human Development course that was very rigourous; we each had to do a case study of an actual young child, keeping a log of the child’s behavior and analyzing it via the various models we were learning.

    I remember my case subject was a three year-old boy, very bright and charming, who had an infant brother. I would observe him sometimes and also babysit him sometimes too. He had a preference for a little storybook to be read to him called “Busby” or something like that about a city bus and its adventures, sort of a Thomas the Tank Engine precursor. There was a particular page where Busby spoke about the newer model of city bus, saying “I can do anything those new buses do; I’m just as good as they are.” The little boy would often spend a moment lingering on this page when I read it. In the analysis section of my log, I wrote something like “Perhaps [subject] is reflecting on potential feelings of displacement or jealousy about arrival of infant brother.” The professor wrote “Good” in the margin and underlined it several times.

    I don’t mean to suggest this one moment of feedback was a wake-up call for me and I just put my nose to the grindstone, but I do remember my life outlook changing around that time, as far as academics were concerned. I really started pushing myself and seeing how far I could stretch, and it was enjoyable.

  • March Madness

    March Madness

    Max is now positive for Covid too and we are embunkered (is that even a word?) together at home for the duration. He came up positive when I swabbed him yesterday but didn’t seem particularly ill except for body aches. So he’s a few days behind me Covid-wise. I crashed spectacularly around 9 a.m. yesterday and spent the day mostly sleeping, only to return to bed at 8:00 pm for the rest of the night.

    We’ll see if I’m able to (virtually) return to the office on Monday, and then there’s Passover starting Wednesday evening. All may have to be finessed. It’s difficult for a compulsive like me to let go of everything like this. I’m used to constantly making mental lists and ticking them off, to getting up early and arriving everywhere early. It’s served me well in my life and my career. There is something to be said, however, to the anodyne fog that this illness casts over you and the intense fatigue it generates. It certainly helps you just remain in the moment and suspend any racing thoughts.

    I think that was one of my deficiencies that bothered me the most as a mother, that I felt I couldn’t just be in the moment with Sarah enjoying myself. I felt very driven. I was mentally checking off my list every moment, making sure I was on my toes and “meeting my goals.” Max was so much better about just having fun with Sarah rather than an action plan. I hope she knew how much I enjoyed her.

  • Mrs. de Winter

    Mrs. de Winter

    I am officially started on my second dose of 3 Paxlovid horse pills this morning. Haven’t seen much improvement yet, but hoping by sundown tonight I’ll be a new woman. Or at least some semblance of the old, neurotic but not virus-ridden one.

    I think it was really good for us to travel, but hard in some respects, mentally more than anything else. I couldn’t help sometimes feeling like the Nameless Second Mrs. de Winter and Max de Winter shuffling through the hotels of Europe in their fog of angst after Rebecca and Mrs. Danvers burn down Manderly. Too much? Yeah. We don’t drink or play tennis.

    One of the hardest things for me was how terrifying it was to be separated from Max, in a crowd, or not see him in an art gallery, or just in a strange place or something. It felt frightening not to know where he was.

    When we arrived in Edinburgh, we stayed in a hotel that used to be a maternity hospital in the 19th century. “Think of all the women groaning in pain in this room,” I said when we checked into the room. “Think of all the happy mothers snuggling with their babies,” said Max.

    That night I had an intense dream of Sarah, one of the first I have had. I was getting her ready for the day and braiding her hair into two braids the way she liked in the last couple of years of her life. Sarah said to me “You should love again.”

    Of course, there are other people besides Sarah that I love, but don’t know if I will love again so completely, so unreservedly, and so securely as I did with my child. That bond, especially with a special needs child, is so intense and unwavering.

    Later I told Max about the dream and he reminded me that Sarah was often very impatient about have her hair “done” and hated hairbrushing. He interpreted her dream comment as being peevish, more in line with “Not so much love! Find someone else to love on, Mom! I want to watch YouTube” That made me laugh because it did sound like Sarah.

  • Montgolfier

    Montgolfier

    We are home from our travels out of the country and I’m back to blogging. I missed having this outlet while I was away and it was nice to get a few comments that some of you would miss my posts too. I may be a bit loopy this morning because it seems I brought home an extra souvenir in the form of COVID-19. I started coughing and sneezing yesterday a lot on the plane. I feel rather bad for the person who was sitting in our row with us, but so far Max is COVID negative based on the test swab I drilled into his sinuses and up into his brain, or so he claimed last night, so maybe it’s just me.

    The three of us (Sarah, Max and me, not the three of us in Row 34-ABC) managed to avoid COVID completely during its heyday. I’m really glad Sarah did not have to go through this. Despite being “medically fragile,” Sarah actually was in robust health for the most part. She had a couple of ear and strep throat infections as a little kid but really was not “sick sick” very much at all. She had good resistance, and of course she had all her vaxes and boosters.

    We thought of Sarah all the time when we were traveling and we saw signs of her too. When we got to the British Museum, we walked first into an alcove exhibit about late 18th Century “Balloonmania” for large balloons you could ride in over the countryside called Montgolfiers. On display were plates decorated with balloons and other decorations with balloons on them. It was a very small exhibit but we got a kick out of it. Also, when we arrived in Edinburgh and came out of the train station, it had stopped raining for a few minutes, and there was a huge rainbow in the sky. People were stopping and taking pictures of it. It was really spectacular.

    Finally, and I’m not sure why this incident meant so much, we were eating in an Italian restaurant on the last night of our trip, sitting near the windows of the restaurant, and a family finished up and left. Their little girl went out with them and then ran back to the window where we were and started waving to us. I just felt it had something to do with Sarah. I don’t know. I may be a little feverish. I’m going to call the doctor’s office when it opens and ask for some Paxlovid.

  • Maximize Independence

    Maximize Independence

    The Zambian Charity People came yesterday and were super nice. They picked up both of Sarah’s wheelchairs as well as some other medical equipment odds and ends we had for their mission to disabled kids. They will be sending us photos of the kids using Sarah’s stuff and the leader said “Sarah’s name will be long-remembered” which was wonderful to hear.

    After the wheelchairs were removed, Sarah’s bedroom seemed much bigger and emptier and it made me start thinking a little bit about whether there were possible next steps for the room. This is very scary to ponder. From birth to age 9 Sarah slept upstairs in a small bedroom down the hall from us. First in a crib, then in a toddler bed. Around that time, we began to realize that our house needed some changes to make it accessible for her, or we needed to move. She had a power chair, but there was no way to bring it into the house. It stayed at school all the time. She also needed a more accessible bathroom.

    We decided to alter and add on to our colonial cube of a house, to build on a first-floor bedroom, and redo the first floor bathroom, and also add a ramped entrance. Projecting ahead, we saw Sarah as a young woman in her 20’s having the freedom to drive her power chair from her bedroom/bathroom suite, out her private entrance and ramp, and up five or six blocks to our town center where she could meet friends or get on the Metro or fulfill whatever plans she had. This was our fantasy. I can’t say she ever wanted to do that much independently but we tried to maximize that possibility.

    Sarah’s room is the biggest, sunniest room in the house and it’s mostly filled up with her huge collection of stuffies. I don’t think we could bear to box them up or give them away yet. Her Sleep Safe Bed is still there, of course, and tacked up around it are the pictures and love notes from Danny, Stampy stuff, certificates and awards from school and ballet, and other friend stuff, and art.

    Yesterday was a pretty hectic and busy day, with the Zambians coming over, and Max and I packing and assembling stuff for our trip today. In the evening, things had settled down and before bed we were hugging and saying how excited we were about the trip. “But we’re leaving home, you know” said Max.
    “It means we have to leave here.” It’s very hard.

  • Strawberry Twirl

    Strawberry Twirl

    This week Max and I are leaving for our long-planned (well, since last November) trip to England and Scotland. Tomorrow I may or may not post here, and then the blog will be “on hiatus” as they used to say about poorly-performing television shows in the 1980’s, until about April 1. Try to muddle through until then.

    Leaving our home is scary but also exciting of course. Polly will be staying with her boyfriend/dogsitter and I am trying not to lose it with too many nightmarish daydreams of illness, accidents, and sudden death.

    My Dad unfortunately has to have the battery for his heart pacemaker replaced while we are away. The procedure couldn’t be scheduled any sooner and certainly I don’t want him to wait. My brother will escort him home the very same day as the procedure. Google tells me there is a small risk of bleeding and infection. If my Dad suffers any pain following the procedure, he must immediately inform staff and measures will be taken to make him comfortable, according to the Interwebz. So great, I’ll be in London, and my 90 year old Dad will be bleeding, opioid-addicted, and septic. This is pretty much how my brain works.

    My biggest worry is of course Sarah. How will she react to her home being empty? (Neighbors will be looking out for our house, and both the dogsitter and cleaners will be visiting). But we won’t be there at night, hanging out, and we won’t be home at all for a stretch of days. Also, does she want to come with us? Fly behind the plane?

    We are getting Sarah’s wheelchairs ready to give to a project that is shipping medical supplies for the disabled to Zambia. A few months ago, I really found it difficult to think of giving up her wheelchairs but when we got an email from a liaison to this project asking if we would care to contribute any supplies, Max and I decided that Sarah would really enjoy the idea of her two chairs (one power chair, one stroller-type of chair) going to kids in Zambia. One of Sarah’s favorite books when she was younger was called Zoom! by Robert Munsch and Michael Martchenko. It’s about a girl who chooses a superfast powerchair from the “Powerchair Store” and then becomes a heroine racing her little brother to the hospital when no ambulance is available. Great story.

    The dead child memoir I am reading right now, Finding the Words by Colin Campbell, which is really quite good, talks about bringing little talismans and adopting little rituals about your deceased child (or children for Colin) into your new everyday life to memorialize them and keep them always with you as you may be building a new life.

    In preparation for the Zambian Project people coming over today to pick stuff up, we removed Sarah’s little personal items and chachkes from her wheelchairs. She had a lot of the little clip-on dangling toys that typical kids would put on their backpacks but that she put on the various wires and straps of her chairs. There were Minions, Shopkins (Sarah went through a long Shopkins phase after she was introduced by her friend Chrissy Grube), Whiffer Sniffers, and lots of animals.

    So I took the Strawberry Twirl Ballerina Whiffer Sniffer and clipped it onto my travel purse to come with us to the U.K., and the animal and minion clip-ons will ride on our other bags. Sarah will be there with us.

  • City Place

    City Place

    One of the reasons I feel kind of crazy right now, so I’m told, is that serious grief involves identity re-formation and search for new meaning. Being Sarah’s mom was a huge part of my identity and so I’m basically walking around without an identity and that’s crazy-making. When (if?) I integrate or stumble on a new identity and sense of meaning, I will feel more sane again.

    I remember some of this dissociated feeling right after Sarah was born, when we were in the no-sleep newborn stage that involved constant bodily fluids all over both of us. I felt a bit like I didn’t know who I was anymore, like I was starring on some weird Reality TV show where you were forced to answer your own doorbell in pajamas covered in spit-up, baby poo, and human breast milk while carrying a screaming infant and listening to some teenager talk about Saving Sligo Creek. But then Sarah started sleeping, and she had a great nanny too (Alba) when I was at work, and we found our groove and I started to love being a mom.

    So the answer seems to be that I have to find some sort of new groove or meaning to my life, other than watching documentaries and reading dead child memoirs. This is scary and daunting.

    It’s been pointed out to me that I’ve lost more than one piece of my identity, since I not only lost Sarah, but my mother died a little less than a year before Sarah. My mom lived up in New York City and up until Covid she used to like to come down on the train (with my dad) every few months and stay a few days. My mom was a bit of a character. She claimed there was no good shopping in New York City – zero – all the stores there were gone! There was nothing! She really liked shopping in our little suburban DC mall, and she and I and Sarah would often head over together.

    I remember once she needed to get a dress for a Bar Mitzvah, and I took her and Sarah to a slightly larger mall nearby and parked and got Sarah into her stroller-wheelchair and then got Mom’s rollator (a kind of walker) and set that up and got each of them on one side of me and the other, and we were slowly making our way into the mall from the parking lot and a woman in a car stopped for us. She looked at me and mouthed “Wow.” I just nodded and smiled. I liked being their caretaker and protector.

    It has always made me feel good to have people to take care of, and I really don’t anymore. That makes me sad. I have Polly the Beagle of course, and Max my husband. And my Dad. There are various ways we can become involved again with special needs kids, foster care, respite care, etc. I think this may be too painful to do at this point. When I allow myself to think about it, my fantasy always goes bad — the child doesn’t like us; CPS investigates; we go broke, or some such catastrophe.

    In fairy tales, the childless older couple always discovers a new child or baby in their garden, or sleeping in their house, or through some other magical or natural mechanism like the sea. I wonder if this is wish fulfillment left over from an era with a lot of child loss. It would be so much easier to just jump to the part of the story where we came home from Safeway and there is a new kid in Sarah’s room for us to love, maybe with Down Syndrome or a non-fatal genetic disorder. I don’t think that’s going to happen.

  • Mangiare

    Mangiare

    We are definitely fully committed to the HBO show Gomorrah now. One of the things I find fascinating is that the head of the crime family, Don Pietro, is currently in prison and he’s in a communal cell that has maybe 10 men, with bunks for them, and a very large dining table. There’s a bathroom of course en suite, and there’s also a kitchen, stocked with pots, pans, an array of produce, and so forth, and every day the men in this cell cook together and eat these incredible-looking meals around their large table. (Their female visitors also bring them a lot of food.)

    Frankly, these Neopolitan prison meals are of far better quality than anything I have ever cooked up or possibly eaten. Dinner time has always been a bit of a sore subject in our house. We’ve never officially had a family dinner with the three of us around the dining room table and food and drink and conversation and so forth. Sarah needed to be fed by hand for many years, and this was an intensive, time-consuming task that often resulted in tears, begging, and showdowns between her and Max, her official feeder. Her overall muscle weakness affected her facial and jaw muscles and her tongue and it took a lot of energy for her to chew and swallow. Because she had dystonia (a movement disorder), she burned a lot of calories just from muscle movement, and Max tried to stuff as much food into her as possible. But she was always very, very, small and thin. At age 5, she looked like a toddler; at age 10, she looked like a 4 year old and weighed 39 pounds and was around 40 inches tall.

    Several times along the way medical professionals suggested a feeding tube to make things easier for us. Looking back, we resisted for far too long. It was psychologically difficult for us to concede that we couldn’t feed our child. Food was like love, food was warmth and sustenance.

    Finally, the summer we went to Camp Chatterbox, the AAC camp, we were helped to change our minds by living with so many other families of kids with severe disabilities. Also, the food was terrible there and it was dreadfully difficult to get Sarah to eat. We heard from so many of the other families “What are you waiting for?” and that life was so much easier for their children once they went the way of tube feeding. That when a child was within striking distance of puberty, it was just impossible to keep up with growth spurts through manual feeding.

    So after camp and discussing it with the crew at Johns Hopkins and Kennedy Krieger, we talked to Sarah and read books about kids with feeding tubes and explained there could be an operation to put a button in her tummy through which she would eat and take medicine instead of chewing her food. She was enthusiastic right away and wanted one.

    After she got the feeding tube, she gained 11 pounds and grew over 3 inches in the first few months. It felt like a miracle. So Sarah was not exactly a foodie by the time of her death. Like many kids with feeding tubes, she mostly lost all interest in eating by mouth and rarely did so. She weighed 70 pounds and was 52 inches tall when she died, though her height was very hard to measure so that’s just an estimate. My little pixie.

  • Paso Fino

    Paso Fino

    Facebook reminded me this morning that I posted in 2014 about the sudden death of Sarah’s beloved therapy horse, Bo. She had been going to weekly therapeutic riding sessions on Bo, a retired Paso Fino show horse who had been donated to the stable to work with special needs kids. He was a sweet, elderly horse with a kind of natural dancing, gliding gait that made Sarah very comfortable on his back, with the support of a bolster and “sidewalkers” to make sure she did not fall off. During her first ever horse show at the facility, she and Bo won two blue ribbons together. She had a “Bo” stuffed horse at home and several Bo-themed horse clothing ensembles.

    Bo was a senior citizen and one evening the stable manager sent out an email to all families that began ‘It is with a heavy heart…” and informed us that Bo had experienced severe horse colic and the decision was made with the veterinarian to end his suffering. There were several parents of Bo fans, including me, who emailed each other and wondered how we could ever break the news of his death to our children.

    We introduced Sarah to the idea that Bo had spoken to his friends Elmo (a quarter horse) and Finn (a Norwegian Fjord pony) about her and instructed them in her needs and requirements. They were ready to take over and looking forward to meeting her. She ended up riding Elmo very happily for several more years and collected even more Elmo chachkies.

    I’m not sure that Sarah completely understood about death, but then, what child does until they are fully mature? Sarah lost several friends in childhood who were also ill from life-limiting diseases; her friend Chrissy from Giant Axonal Neuropathy when they were both 10, and also at age 10 her buddy Gabby from complications of cerebral palsy, and her friend Leo at dance class when she was 12 from complications of Down Syndrome. 10 was just a hard year for these incidents, looking back. We had owned a second beagle, Harry, whom we all loved very much and who was closely bonded with Sarah. Suddenly he developed canine lymphoma, and was dead within three weeks.

    I remember Max and I went with Harry to the vet during the school day, because he had reached a crisis point and needed euthanasia, and so Harry wasn’t home to meet the school bus or greet Sarah when she got home. She knew he was sick of course, and we told her he couldn’t go on any longer and he had died at the vet’s office.

    I remember she just searched our faces, and for a minute she gave a big smile, like “This is a joke, right? Get to the funny part. Get to the part where Harry comes running out.” We had to tell her “Honey, we’re not joking, we’re serious. Harry is dead” Then she cried.

    This all still feels like a bad joke to me too, like I can’t wait to get to the funny part, or the part where Sarah pops out and surprises me. I still keep hearing Max’s voice on my phone crying and saying “Sarah…passed away” and my thinking “That’s ridiculous” and I want to live in that moment of scorn, forever and ever.

  • Oriental East

    Oriental East

    Google News let me know today that there is a new mental disorder classified in the DSM-V called “Prolonged Grief Disorder.” Thanks, Google, I needed more things to be anxious about. Criteria are “intense longing for the person who died;” “feeling as though part of oneself has died;” “preoccupation with thoughts of that person” focusing on “the circumstances around their death,” a “marked sense of disbelief about the death,” and “grief affecting everyday functioning in a way that normal grief does not.” Oh, and this has to persist for a year in adults and six months in children.

    So here we are approaching Month Seven since August 18th and I seem like a promising candidate for this new disorder. On the other hand, most of the parents in our grief group lost children between 3-10 years ago. There are a couple of newbies like us but the majority are long-term grievers. Everyone thinks about their children on a daily basis. I guess that also speaks to the group’s cohesion, that members have stayed with the group long-term, which is nice.

    As I mentioned before, Max and I are taking a trip to Great Britain. We are leaving in a few days. This is a big step for us. Not only in terms of Sarah and our grief, but just traveling together alone, which we really haven’t done since our honeymoon, when I was 8 months pregnant with Sarah.

    This trip is almost like a celebration because April 1, 2023 is the 20th anniversary of our first date. It occured over dim sum in a Chinese restaurant right here in the suburb of DC where we live, that’s unfortunately gone out of business now. Looking back, I’m surprised that Max agreed to a morning brunch date. Maybe we met at noon or 1 p.m. I can’t remember anymore. I do remember how much I enjoyed talking to him, how interesting he was, how he took an interest in me and my opinions and what I was reading. Later, when we had been dating for a while, he told me that I looked like a Pre-Raphaelite painting, which was one of the nicest compliments I’d ever gotten.

    Sarah would frown when Max or I referred to our first date at Oriental East, which we visited as a threesome several times a year until it closed. You ate at the Chinese restaurant without me? That’s not fair! “Sweetie, you weren’t even born yet! We had just met!” Pouty face. Not convinced. Major betrayal on our part. “We didn’t have any fun without you,” we reassured her. Big smile.