• Memorabilia

    Memorabilia

    This morning I was cruising around Facebook and a friend had posted about her young daughter’s choice of Halloween costume. This is another girl named Hannah (it’s a popular name). My Facebook Friend said something like “Hannah passed on the princess costume and chose the Jedi costume instead” and there was a cute picture of her little girl wearing her Halloween outfit choice for this year. When I read the first few words — Hannah passed on — I got so shocked and scared that Hannah had died during the night like Sarah did that I could barely focus on the rest of the post. Why was she wearing a costume? I had to read it several times to understand and assure myself it was something mundane and Hannah was still alive. It’s not my friend’s fault that I would read her mundane post that way. It’s just my damn PTSD.

    I still think I’m doing well, I’m even managing not to pick at my face (see yesterday’s post), it’s been almost two days now so the sores are healing up well. The last two days have been very busy helping Dad move into his new apartment at the community he chose not far from here and help him get set up. Today the three of us (Max, Dad, and me) are going shopping for a new couch for him.

    Dad as always brought with him a big folder of “memorabilia” for me. Old papers, letters, drawings, school report cards of mine throughout my lifetime. I’m flattered that Dad kept everything that I ever sent to my parents. But Dr. Z thinks I shouldn’t go through any more of this memorabilia because the last time my Dad brought down a bunch of this stuff for me there was something in it, I think a letter between my mother and me, that triggered a lot of sadness and anger and I really got very upset after reading it. My relationship with my mother was really so rocky and that fact makes me sad now that she is gone.

    Well, I couldn’t resist going through this stuff and looking into the past, and I was reading through the pile yesterday evening. There was a book review in it that I wrote in 5th Grade and was published in a children’s journal of some kind. In it I talked about the plot of the book and I said something like “The girl in the book prefers her father to her mother.” It was a bit of a nonsequitur in the review. It made me feel sad that my psyche was sort of hanging out there for all to see when I was that young.

    Sarah adored Max. I think she adored me too, of course, but I had no problem with their having a special, close relationship and her thinking she was his princess and his special girl and so forth. I encouraged it. Shouldn’t a little girl have a wonderful relationship with her dad?

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  • Picking

    Although my mood has been pretty good lately, I’ve been struggling with picking at my face. This is a problem I’ve had from time to time and it sneaks up on me and gets away from me. It’s really a bad cycle because having little sores and scabs on your face (gross, I know) contributes to feelings of negative self-worth, which of course makes you want to pick on yourself more. I’m really trying to cut this cycle by slathering a lot of ointment (it’s mostly my chin) and letting these sore spots heal while they are in the crusty scabby phase (TMI) so I can get rid of them. I have about four or five of them, I think.

    Why do I fall into this cycle where I end up picking on myself, literally? I can’t stand to watch other people do this, and I’ll tell Max to stop picking at his nails, or cringe. The last week has been very busy. My Dad is here, and I’m helping with the move, but this started before that. I did have a “big case” at work, and I was feeling impatient and maybe a little angry waiting for all the pieces to fall into place with all the major “stakeholders” as we like to say. But nothing really intensely aggravating.

    I did spend more time than usual crying this week. I had a lot of memories of Sarah. Not new memories, just thoughts and bits and pieces of her flitting across my mind. There was an article in the news about “near death” experiences and it talked about the universality of the dying person seeing a being of compassion and light, being drawn to it, feeling a sense of well-being. I really hope Sarah’s dying experience was positive and beautiful like that and not frightening for her.

    Sarah had a friend, Hannah, from ballet and some other activities, who was similar to her in many ways, a little bit older, very sunny personality too. Hannah’s mother posted on Facebook the other day that she was able to leave Hannah alone in the house for a few minutes for the first time while she walked the dog, and it was a big milestone for them. I congratulated them and so did everyone else. It makes me sad that Sarah will never reach that milestone, or any other new milestones, anymore. But she did reach the milestone of crossing over to the other side without me. What a big girl.

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  • Birthday Bear

    Yesterday was Polly’s birthday. She’s 12 years old. That’s pretty senior for a dog, although beagles live to be around fifteen or so in the right circumstances. We celebrated with treats, singing the Happy Birthday song, and giving her extra love and attention. I felt like Sarah stayed close throughout the day. Polly and I took a walk to the park in the morning. A lot of days recently Polly doesn’t want to walk as far as the park, just around the block or so. But maybe that’s because of the heat.

    Yesterday we made it all the way to the park and wandered around a bit. There were two kids playing near where Sarah’s memorial bench is. They looked like a younger girl and an older boy, or possibly two girls. It was hard to say. They were pretending to ride horses, with their arms up in the air for reins, and running around in circles. At least that’s what I think they were doing. The sight of them moved me to tears and I had a little cry, sort of a sneaky little cry because I didn’t want to upset the children. I somehow felt that Sarah incorporated herself into their fantasy play. She loved horses so much.

    Sarah felt close last night too when we brought down Birthday Bear to sing happy birthday to Polly. He’s a stuffed bear whose paw you can squeeze to sing. We also have the “Old Man,” a stuffie who sings Happy Birthday and farts. They sang in concert for Polly, who looked nonplussed. I felt Sarah was definitely there, because she loved this birthday ritual. She even brought Birthday Bear to school once to show to the other children when there was some sort of unit on family traditions.

    I guess we will have to build new family traditions now that Sarah is gone. My father is arriving on the train today from New York, for his life to begin here in Maryland nearby us. I guess there will be new family traditions from his presence. I just don’t want Sarah to be forgotten in any way.

    The leader of our Compassionate Friends group talked about the fact that sometimes people who lose a child end up getting all new friends, sort of the way people who become sober get all new friends. Because their old friends don’t understand how much they’ve changed. They just don’t get it. Not that I was a happy-go-lucky, stay-out-all-night and party kind of person when Sarah was alive. I’ve always been kind of an introvert. But the old me died too when Sarah died.

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  • Sudden Departures

    Right now I’m listening to my yearly mandatory data privacy training in the background so this might be a little disjointed. It feels a bit ironic to be learning about (or tuning out) all this verbiage about structured and unstructured threats, internal and external risks, risk and threat registers, and so forth, when I feel like I constantly perseverate about threats, risk, and well, let’s face it — death — all the time.

    The worst has happened. When will the worst happen again? It will surely recur, won’t it? Someone will wake up dead or disappear again. In the Compassionate Friends meeting, I talked a little bit about my fear that everyone I care about is going to wake up dead, or die suddenly. Other people commiserated with similar fears, fashioned to the type of death they had experienced. Everyone is going to die in a car accident. Or of a brain tumor. One member who went to the national convention for our group told me he had attended a meeting just for parents who lost their children in car accidents. Apparently those people have an especially hard time when friends or family members drive away in a car. They fret and assume there will be a terrible accident and ask to be called on arrival and so forth. I don’t know what would be harder; people have to sleep, they have to ride in cars too.

    I’m watching the show The Leftovers right now and it deals with loss and a fantasy event they call “The Sudden Departure” where many people just disappear. It’s a good show, I like it. But part of the plot is that there’s a cult who are trying to focus everyone on this loss, which happened several years previously, and make them “remember” their departed loved ones. It strikes me as a bizarre conceit. The people who lost family members, even though they go about their everyday lives, work, eat, whatever, cannot have forgotten the departed. They don’t need reminding. I’m sure they think about their loved ones almost every moment of the day, regardless of what’s happening in the real world. So I just don’t get that.

    If someone were to remember or commemorate Sarah with me, building a lifesize doll of her (as they do in this show to make the townspeople think about their dead) I would be thrilled, not angry. Wow, you were thinking about her too. How wonderful.

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  • Cycling

    Max has been pretty down lately and missing Sarah quite a bit. His sadness cycle is occurring while I am feeling more stable overall right now and less depressed. It’s probably better for only one of us to be really down and sad at a time. The other one gets to be the supportive one. We have our grief group meeting tonight too and we are both looking forward to that.

    It’s been a little difficult juggling everything because an old friend of mine has been in town this week and I’ve been spending time with him too. Robert and I were very close in the era before I started dating Max and right before he met his husband Tom. He and Tom moved to Canada twenty years ago and live in a small town in Nova Scotia so we don’t get to see much of them.

    Back before I met Max, I felt like I would never meet the right person for me and would never get to have a child. Robert felt that he would never meet someone right for him either in the lead up to meeting Tom. We watched lots of episodes of the old Sex and the City from the 90s together and deconstructed our dates over the phone and over brunch. Every person we went out with had a nickname. “So, do you think you’ll go out with Natural Deodorant again?” “Please tell me you’re breaking up with If I Could Turn Back Time.”

    So many statistics are thrown at couples who have special needs children to the effect that their marriages aren’t going to survive. As far as I can tell, there are no actual studies that back up these statistics. It’s just one of the ugly disspiriting things you have to put up with when you have a special needs child, like stares, unwanted advice, using up all your sick leave. You get told your marriage probably won’t survive. Actually, most of the marriages I’ve seen that involve special needs kids are extraordinarily durable, because the parents learn to function as a team, as a well-oiled machine in which each person knows the many tasks necessary to get through a day. Of course, if one partner is too selfish or immature or can’t deal somehow with carrying their part of the load, then I suppose the couple would break apart. But as I said, I haven’t seen that happen too much.

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  • Duck Duck Goose

    Lately I’ve been watching a pretty stupid documentary series on HBO called “Signs of a Psychopath.” Am I the only person who watches stuff like this and then starts wondering if I fit the bill for the diagnosis? I don’t think I’m sadistic or lacking in empathy and I certainly don’t torture small animals. But what about “impression management,” glibness, and superficial charm, which are all apparently signs of a psychopath as well? Doesn’t everyone practice impression management? It seems to me that a lawyer’s entire career is an exercise in impression management. Let me tell you how to perceive my client. He’s the good guy and you want to believe my story of why we are not at fault. Let me persuade you why you should believe that.

    I know I am probably not a psychopath. I’m too compulsive and anxious about what other people think. Too guilty. But there’s times I do things despite “the rules.” I remember once we were leaving a medical appointment with Sarah, and there was a basket of stickers for the kids. Sarah really loved stickers when she was a certain age. So I got her three or four of them, despite the fact that there was a sign posted that said something like “Only one sticker per child please!” Max was teasing me, pointing out “The sign says only one sticker per child.” And I responded, “Clearly that doesn’t apply to Sarah.” Is that the sign of a psychopath?

    I guess I just felt like she deserved more treats, more presents, more rewards, maybe because life didn’t provide her with the same little natural payoffs and treats it gave other kids. She couldn’t run through the sprinkler, or be the first person in line, or catch fireflies, or play tag.

    We soft of did those things with her, or tried to, but it’s not the same when your parents are stage-managing your entire life, playing Duck, Duck, Goose by running with you in their arms. So I let her have an extra long turn on the swings when she was little, even when other kids were waiting. I don’t know if that was wrong of me.

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  • Beshert

    Beshert

    It’s over. Death Month has officially ended. I’ve flipped both our house calendars to September, the free one from the SPCA and the yearly one with pictures of my niece and nephews and their dog. You can stand down, those of you who have kept vigil with me. Your support is appreciated.

    What are the teachable moments from Death Month, as President Obama would say (not about Death Month obviously). What are the lessons learned, as one of my former bosses would say as she drilled down to the micro level about some lost case that had struck me as more or less a crap shoot.

    Sarah’s death wasn’t a crap shoot, but it still feels very, very arbitrary, invalid, and filled with whatifs. Is it better that I can ponder those whatifs without crying so much now, that I have a little more distance and am a little less emotional? Or is this rumination — without so much upfront depression — just some kind of sick hobby?

    One of the things I ws ruminating on during Death Month was the question: Was Sarah the love of my life? I arrived at this question kind of backward, because I started thinking, how can I possibly go through this grief experience twice. Once for Max and once for Sarah. It seems like that would be too much to bear in one lifetime.

    Now, of course Max is the love of my life in terms of being my “soul mate,” my beshert as the Talmud says, my romantic partner and the only person in the world who would put up with me on a day-to-day basis. But it feels like the love I have for Sarah was so intense and so unconditional. And her love for me felt so unconditional too. I felt..so completely adored. Yes, as she entered adolescence she was less interested in us, more moody, more apt to want to watch YouTube, more concerned about her boyfriend. But I always felt like I was so important to her, every single day.

    I ended up Googling “Can your child be the love of your life?” and I discovered that a lot of other people had debated this subject because it had appeared in some way as the plot of a TV show (which I didn’t watch except for the first season.) So apparently this is not an original thought. But I’m glad that other people have thought that too.

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  • Beloved

    Beloved

    I read a post this morning on the parenting website I occasionally visit from a woman who was upset because her friend lied to her about receiving a big bouquet of flowers. The poster was convinced it was a lie because she recognized the photo her friend sent was a stock image from Google. I felt bad for the friend. It sounded like a little-girl lie, from a place of insecurity and poor self esteem. Perhaps she’s down on herself and needs to know she’s worthy of some flowers, or that men find her attractive.

    Lying is a developmental milestone and we were thrilled when Sarah developed the capacity to deceive us or act out a little subterfuge. She did this in a couple of ways. If school was boring, she’d pretend she was sick or press the “I don’t feel well” phrase on her Talker and go to the nurse’s office, and have the nurse call us to get her. This didn’t happen often because she normally loved school, but there were a statistically significant number of times that we received a call from Sarah’s school(s) saying “Sarah doesn’t seem to be feeling well. She says her stomach hurts. I think she needs to be picked up.” Upon pick up and being settled at home, she would be fine. And we would ask her, “Sarah, did you lie about being sick? Were you playing a trick?” She would laugh hysterically, and we would try to look stern and peevish. Behind her back, we would high-five each other for her pulling off this little charade. We both had a long history of skipping school before we reformed and became good students when we got to college.

    Sarah had to take a series of IQ tests when she was 10. I regret that we put her through that now, but we were trying to get her out of her hideous placement in the MuchLovedSchool (see my earlier blog post), and the thought was possibly to find a private school placement. These tests unfolded over many months, because they were accommodated to Sarah’s disabilities and administered in small chunks, in our home, with the aid of her tutor, and using her Talker.

    The classic IQ test asks so many questions that are both “values driven” and simply beyond the every day experience of a kid like Sarah. Many of them are also hopelessly old-fashioned. For example, there are questions that asked her why we wear seatbelts in a car. She doesn’t wear a seatbelt; she rides in her chair in a wheelchair van. I’m not sure she can visualize our seatbelts from where she sits. Also, there were questions about whether she helps mom with the housework (obviously not); what to do if there’s a fire in the house; and how to find a pay phone (really ridiculous, there are no pay phones anymore).

    I hated that she was being asked these questions that she had no life experience to answer and that her intelligence was being judged as a result. And that her “failure” to help out around the house was considered either an intelligence downgrade or some form of sociopathy.

    The psychologist who did the tests wrote a very nice write-up of Sarah’s strengths and her charming personality, and ultimately determined she had a difficult IQ to measure but estimated it around 70, or some level of intellectual disability. Selfishly, I had fantasized that Sarah was secretly a genius, but I knew in my heart that she had cognitive as well as physical deterioration. She was still our beloved girl.

    Adding: The Memorial Bench is in. Photo above.

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  • Three-Hour Tour

    After I published yesterday’s post about feeling like there was a “New Me” possibly developing, I was lying on the couch, really feeling pretty proud of myself for being such a Mental Health Poster Child. I patted myself on the back, foreseeing that the worst could be over with Sarah’s death. Who were these fools who claim the second year of grief is so bad?

    As I was lying there in the living room, the memory began to play over and over in my mind of when the doctor called me with Sarah’s amnio results when I was pregnant. I’ve written about that story before. I had been a bit trepidatious about the possibility of having a girl, thinking I’d probably screw her up, but when the doctor told me Sarah was a girl, he said “You’re going to have so much fun with her.” For some reason, that little phrase alone made me excited and happy to have a daughter and countered my catastrophic thinking, and I relaxed.

    So back to lying on the couch yesterday. This memory of the phone call from the doctor kept going through my mind, sort of Gilligan’s Island style. You know “A three-hour tour! A three-hour tour!” But instead: “You’re going to have so much fun with her.” I started crying and my anxiety ramped up, and I tried to figure out why. We did have a lot of fun with Sarah, probably the most fun I’ll ever have. But ultimately the doctor’s “all clear” on the amnio results was a bit of a false front, not intentional of course, because the technology didn’t exist at that time to detect her rare genetic disorder. I don’t know if it’s routinely done today, whole exome testing, during pregnancy.

    Maybe I’m anxious that I’m giving myself a premature or false “all clear” with this New Me business. Letting myself get excited for the future when something bad could actually loom. I wish I could let myself just be happy, even for a little while, even if there’s more pain and grief in store.

    Is this a self-protective mechanism? Don’t let her get too excited. Or am I just a real drag, bringing down the mood all the time with anxiety or guilt?

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  • Kitchen

    So yesterday I cracked open 45 dozen eggs. That’s 540 eggs. I cracked the eggs into a huge sieve and sort of mixed them up and down with a metal ladle so that they flowed down into a big plastic container. Then I covered up the container, dated it, and put it in the “walk-in.” The container of eggs was extremely heavy. I also peeled about 100 carrots, opened cans of black beans and corn and mixed them together in big metal serving trays, and generally did whatever Chef Willie and Chef Ididn’tquitecatchhername told me to do. It was my first day doing kitchen prep at Shepherd’s Table, which feeds a lot of homeless and I suppose poor people in the county where I live.

    I will go back. I like the place, I like the busy-ness and the feeling I have feeding people, and I like that Shepherd’s Table has their own garden where they grow their own vegetables and herbs. (They gave me a tour.) Yesterday we prepared (I say “we” as in the Editorial We) broiled chicken, rice, and several different kinds of vegetable dishes, plus dessert donated by local stores, fruit salad, and there were also little snack packs made up for people to take with them of cereal and so forth. The food smelled good; I didn’t taste it.

    So I’m feeling quietly optimistic this morning. Like a “new me” is starting to take shape since Sarah died. Is that too much? The new me volunteers. The new me doesn’t wear jewelry or nail polish anymore. The new me is a little heavier than I used to be, at least right now. The new me is quieter, a little more reticent. The new me does Ethics law, not litigation, although that was already starting to happen before Sarah died. The new me will be busy with my Dad nearby shortly.

    I think the new me should probably watch The Bear on Hulu. My dad keeps recommending it, and it’s about a kitchen. Perhaps it’ll help me sharpen my kitchen skills. Yesterday Chef Willie asked me to go open the steamer for him, and I had to look all over the kitchen because I didn’t know what he was talking about.

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