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Stuart in the Sky
It’s important for me to keep reminding myself that Sarah was not a little kid when she died. She was a teenager. I’ve been sending myself a lot of messages in the last few weeks that reinforce the notion of Sarah being “out there” on her own, helpless, away from us, separated, lost. This just depresses me and keeps me sad. Like thinking about the fact that she never wanted to spend a night away from us. Or just thinking about her as a little kid too much, rather than as the teenager in high school she actually was, who would tune us out and give us the cold shoulder in favor of Minecraft, YouTube, and her friends.
I read a quote from the Bhagavad Gita yesterday. “The soul is not born, nor does it die; it did not spring from something, and nothing sprang from it. It is unborn, eternal, immortal, and ageless. It is not destroyed when the body is destroyed. The soul is glorious, unborn, deathless, free from old age, immortal, and fearless.”
Sarah is not scared and alone without us. Her soul is on a journey that I can’t even comprehend. I like thinking of her as fearless. She was very brave. She had to have so many medical treatments and surgeries. The surgery for her scoliosis basically involved stretching her back as if she were on a medieval rack and then clamping it to a metal rod. I can’t imagine.
She has important work to do with her soul journey. It makes me think of when we got her a big balloon of Stuart the Minion from Despicable Me. We purchased several character balloons and Minion balloons over the years from Despicable Me and she loved all of them. She had a special love for Stuart.
One night, she and Max were hanging out in her bedroom and I came in and Max was singing the oldie “Spirit in the Sky” but he had changed to the words to “Stuart in the Sky.” Stuart the balloon was hovering in the air over her bed and she thought it was hilarious. We all started singing it. We changed “die” to “fly.”
Oh, send me up to the Stuart in the Sky,
That’s where I’m gonna go when I fly,
When I fly and I know I’m the best,
I’m gonna go to the place that’s the best,
I’m gonna go to the place that’s the best.
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Separation Anxiety
Sarah had the usual infant’s separation anxiety. I remember when we introduced her to her Uncle Jeff at about six months, and he picked her up from my arms, she began crying to go back to me. I found it very gratifying that she was so attached to us.
But now I feel like the one with separation anxiety. Time to get over it. Time to stop wallowing around being anxious and depressed. Okay, Sarah is dead. She took a dirt nap. That’s a fact. She lived to be sixteen, which several people informed me was a long life span for a child with such complex disabilities. So job well done. All this guilt and self-flagellation is just not productive. Time to start rising above and letting go. I’m boring myself. The curtain has to come down on this phase of my grieving process.
I’m trying to remember that Sarah was a teenager when she died, a fairly grown-up young lady who actually did not want to spend all her time interacting with her parents. She ignored me many times in favor of Minecraft. She was not a tiny infant and she did not need me as much as she did when she was younger. She preferred to Facetime with her boyfriend Danny and she wanted to be with her friends. That’s natural.
Max has a scar on his lip, a faint one. When he was 2 or 3, his mother was getting ready to go out and apparently he had a bad attack of separation anxiety. He tried to run and follow her out of the house and he tripped and fell and cut his lip. His older brothers were supposed to be entertaining and distracting him but I guess they sort of failed or they didn’t realize he would react so strongly. But Max’s mom had a right to go out and do things on her own too. It’s not wrong to want a life of your own independent of your child and to build one.
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Good Talking
Someone made a negative remark about cremation yesterday in a TV show I was watching. That the family was just tossing away their loved one and burning them up. But we really couldn’t bear to think of Sarah outside the house without us in some cemetery by herself. She never wanted to spend a single night away from us. Not to go on camp overnights to Hershey Park or Six Flags, or to respite care at Jill’s House, which a lot of her friends really enjoyed and looked forward to, because it was like a resort for special needs kids. She just never wanted to be away from us at all, not for one single night.
So how could we leave her in a grave, somewhere else, among strangers? How could I sleep at night thinking my little girl might be too hot, or too cold, or getting snowed on? She is always with us now in her purple urn/box in the living room, always a part of things, at the center, the way she liked.
She did not like it if Max and I went off to the kitchen to have a private conversation without her or talked about adult subjects too much in front of her. Yes, she was spoiled, and our whole life was Sarah-centric. Sometimes we would tell her “Mommy and Daddy are allowed to talk about grown-up things for a few minutes” but it was hard. We didn’t enforce any sense of space or boundaries for her the way an ordinary kid is taught not to interrupt their parents. For one thing, she was always praised for any attempt at communication — words, using her speech device, calling out to us. “Good talking Sarah!” we would say. Did you hear that? She said Mama! She said You Stop on her talker! So how could we tell her not to interrupt us or call out to us?
We were used to having our conversations either when Sarah was at school, or via text, or in the evening after Sarah went to bed. Before Sarah died, I did not go to bed at 7:30 in the evening like I do now and wake up at 3, so there was more time for Max and me. I can’t say this was optimal, that we always communicated perfectly. But we were a good team.
Now we have a lot of time to talk, but I’m not always sure what to talk about. Max is supposed to have surgery on his back next week. It’s day surgery. We are also supposed to go to a Compassionate Friends meeting, and there is the informational meeting for Kennedy-Krieger therapeutic foster care sometime in the mix too. I don’t talk openly about my fears about these events because, well, it’s just too frightening. I suppose more death is my number one fear, followed by getting invested in people and then just losing them.
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Real Grief
I really hope that at this time next year I can look back on this summer and just think, Wow, I was really a total mess. What a hard time I was having. I don’t know how I got through that, thank the Lord I won’t ever feel that shitty again.
I always felt like Sarah’s death was a scenario we were going to have to face some day and I worried about it. Max said he never did, that he thought Sarah would live a long, long time. Even though I thought Sarah would die before us, I pictured her dying when she was around her mid-thirties. I would be in my seventies. For some reason that seemed right and appropriate to me, and I never pictured my grief about it either. I have no idea why. Maybe I just thought that it seemed like an appropriate life cycle for her and the right time in my own life to have her die. Like my seventies were the time to “clean house” or something.
I think I had the notion that death would be easier if it weren’t a surprise event, if Sarah had been ill for several days before dying and I got to say goodbye. But I always seem to cling to a notion that I wouldn’t be upset about — whatever the upset is — if the situation had just been carried out more sensitively somehow with more regard for my feelings. Clinging to that notion always seems to make me feel better for some reason. I don’t care that X Boyfriend broke up with me, but why did he have to be such a jerk about it?
I also seem to have the notion that the way I feel right now: upset, crazy, unreal, irritable, shitty, is somehow not “real grief.” Real grief is those very red eyes I saw on members of Crissy’s family at Crissy’s funeral. Crissy was a little girl Sarah was friends with, also disabled, who died when Sarah was ten. I attended her funeral and her family’s faces were so wracked with grief. I don’t think I cried at Sarah’s funeral, at all. I was very calm. I felt too unreal, as if I were playing a part in a play. I was hostess to a lot of people, and reading my carefully-written remarks about Sarah.
None of this is what I expected. I did not expect that when Sarah died, it would be so hard for me to feel centered in my life. To have things to feel good about. Things just don’t unfold the way they should in the universe for the purposes of maximum sensitivity.
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Iceland
Max’s birthday dinner was a pretty good time. We dressed up and ate a lot: appetizers, main course, deserts. We found adequate topics of conversation and I didn’t cry when Sarah’s name came up. We held hands across the table.
I remember for last year’s birthday, Sarah and I got Max three balloons, small ones, with various Happy Birthday messages. They were pretty much going flat by the time I left for my trip last August. But she loved them and didn’t want me to throw them away. While I was in New York on my fateful trip, Max also bought her a balloon that said “Sweet Summer” on it and looked like a watermelon slice. I could hardly bear to look at that one and I disposed of it pretty quickly. It didn’t feel like sweet summer.
The birthday balloon that we purchased for Sarah this last February, the huge one we got by default because Safeway didn’t have any smaller ones, is still going strong. It looks like it hasn’t lost any helium at all. It’s amazing how long this thing is lasting. It resides in Sarah’s room. Most of these balloons ran out of gas in a few weeks so this one is really quite an anomaly. I’m tempted to see some sort of sign in it.
I asked Max if he would like a balloon for his birthday this year, and he said yes. We are supposed to continue his celebration today by going to the movies and we will get his balloon too. We haven’t gone to the movies in a long, long time. We did take Sarah to see Minions: The Rise of Gru last summer but I don’t think we’ve been to an adult movie since before the Pandemic. It will feel very retro.
We talked about going away on a trip the week of Sarah’s death anniversary which will be coming up soon in August. Possibly to Montreal. Possibly to the Jersey Shore. Somewhere. I keep thinking about Iceland for some reason. It’s probably not cold there in the summertime, though. I just would like to go to someplace barren and freezing, and perhaps lifeless. Antarctica? Tierra Del Fuego? Alaska? Probably we would get there and there would be a Starbucks, a Papa John’s pizza, and a 7-11.
I really wish I weren’t such a drag. I can’t help feeling that the best parts of Max and me died with Sarah. That our DNA, our essence, went into her, and although it was ultimately faulty and screwed-up (of course it would be), when she went, she took the best parts of us with her. I’m not sure what is left. Where do we go from here? Iceland? What’s the point?
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Toll House
Today is Max’s birthday and I want it to be good for him. I don’t want to be a drag or be irritable and a depressed mess and bring everything down. I’m doing everything I can to try to raise my mood. I started another troll post on my anonymous parenting website. The theme is ‘Lisa Kudrow should guest star on Succession.’ Of course, people will take delight in informing me that Succession is over and had its series finale. People LOVE to tell other people they are wrong on the internet.
So I’m hoping my little trollery will give me that needed pick-me-up. Refreshing the page will also give me something to do. I hope the Lisa Kudrow fans out there are not taking umbrage. I’m sure she’s a fine actress, although I never really got into Friends. Not dark and depressing enough.
Max and I are going to a real restaurant tonight where we have reservations. It’s supposed to be one of the area’s “hot” restaurants and is close to our house. The actual restaurant has been around for years and changed ownership last year. In its past incarnations, my family ate there to celebrate my high school graduation. Max and I also took my parents, my brother and SIL and their kids and Sarah there for brunch when Sarah was a toddler. So lots of memories. But like I said, it’s been under different management and been very different each time we’ve visited.
When I was in high school, the restaurant had a sort of faux Southern-colonial theme with the waitresses wearing long dresses and those lacy bonnets. It served entrees like Maryland Chicken and other 1950s classics. My mother had chosen the restaurant because, she said, she thought I loved dressed-up waitresses and old-fashioned things like out of Little House on the Prairie. I remember being outraged, thinking that she pictured me as a young child, not a young adult. I was really quite irritated at her choice of that restaurant with its antiquated theme and cuisine. I felt it was just another way she was out of touch and not paying much attention to the “real me.”
When my brother left for college in the fall of my senior year of high school, my mother went through a depression, a kind of empty-nest syndrome, and I found it immensely irritating. She would describe her memories of him as a baby and toddler and I would roll my eyes and I really had no empathy for her at all. I thought the whole thing was ridiculous and crazy. Didn’t she want him to go to college?
I also assumed for some reason that she had little to no reaction to my leaving home for college a year later. I wasn’t there of course, and I had no idea, but I always just assumed that my leaving home was a relief to her, since we had so many issues and quarrels.
Now it occurs to me that her choosing this restaurant with its somewhat childish theme was her way of trying to keep me younger a little longer. Maybe she did have empty nest feelings for me as well. Perhaps she did have a hard time losing me.
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Control
Did I do much of anything yesterday? The cleaners came, so I tried to get out of the house and out of their way, and I bought some bagels, and I just drove around for a while. Part of me still really feels this strong urge to go — somewhere — but I have no idea where. There’s no place I particularly want to go. Just like part of me always seems to feel a restless urge to be eating something these days, even though food doesn’t taste good and isn’t satisfying.
I did interact very appropriately and nicely (Gold Star for me!) with one of my neighbors when we encountered each other walking our dogs. Polly and Bogie have grown up together and were happy to see each other. Steve, the owner, sold his house a few weeks ago and I thought he had left the neighborhood. He went through a divorce. But apparently he is spending the summer house-sitting with Bogie in another house near the neighborhood park. So we walked and talked.
Other than that I felt pretty withdrawn and prickly yesterday. I’ve been fighting a battle at work for a couple months over my advice on a certain action, sticking to my guns, and yesterday I just felt like it was time to lay down my Howitzer on that one. Not worth this much energy. I don’t know if this is a symptom of my depression or a mature act on my part recognizing the limits of my role and so forth.
I think Max would say that it’s important for all of us to learn that we’re not the center of the universe and we can’t control everything. That a lot of anxiety and depression comes from feelings of wanting to be in total control of everything. Which we can’t be. Our higher power is. This is where he tends to lose me and I fade out because it’s just too 12-Steppy. But I see his point about not being able to control everything. I am a control freak who feels like I have to handle everything or it won’t be right.
Sometimes I just want to stop doing everything. Stop walking the dog, stop working, stop answering my phone and email, stop going out. Stop brushing my teeth and showering. I just want to get in bed. What stops me? Well, we have a Compassionate Friends meeting on July 13. And the intake meeting for Kennedy Krieger foster care on July 19. And then Max is supposed to have back surgery on July 20 or 21. And work is depending on me. And my Dad is moving down here in September. And and and.
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Comfy Chair
I hate hearing that old prayer “If I should die before I wake, I pray the Lord my soul to take.” Why should kids have to worry about dying during their sleep?
Sarah did not like to go to bed, and even though she took naps for years, until about age 11, and definitely needed a nap, she didn’t like the idea of taking one. If she heard the word nap in a story or on TV, she would sometimes cry, thinking it was an imperative that she go take a nap.
She didn’t like bedtime either. The tradition of bedtime stories and bedtime rituals started early, with Max telling her a bedtime story and acting out fairy tales for her with her minions as the cast. She just seemed a bit anxious around bedtime. I don’t know if it was the separation from us, or just that she wasn’t part of the action anymore. It makes me feel bad knowing that she ultimately died during the night.
I was driving around yesterday, listening to my 70’s music station like I almost always do and it was playing Everything I Own from Bread. Like so many songs it seems to relate to Sarah.
The finest years I ever knew
Were all the years I had with youAnd I would give anything I own
I’d give up my life, my heart, my home
I would give everything I own
Just to have you back againIt made me think of Sarah’s routine in the morning, of physically transferring her from her bedroom to the living room, picking her up and putting her in her wheelchair, then letting her choose her favorite stuffies to ride in the chair with her to the living room. Then the short ride to the living room, the reverse unburdening of all the stuffies. They could either all be thrown on the floor, which Sarah didn’t like, or they could be carefully arranged on her comfy chair in a horseshoe pattern that left room for her tush and her legs in the middle with pillows for her feet. This took more time and attention. Then, I would transfer her into the chair, tap in the password for her ipad, and put on her video of choice to start.
Depending on what day it was, then I’d either wake up Max, or make myself some coffee, or read the newspaper, look at my phone, or do Sarah’s hair for school. Whatever there was time for and what the agenda called for. Yesterday as I was reminiscing about all this, the weight of her body and of transferring her came back to me. I felt the sense memory of the task and of lifting her up and over. Rearranging her clothes. Positioning her feet. Moving her hair aside. Wiping her face. Kissing her. It was a strong memory.
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Sarahverse
It’s possible that I’m becoming the neighborhood weirdo. I think I’m just 78% of the time either crying or in a bad head space these days and I’m getting pretty antisocial and sketchy. Yesterday when I was walking Polly, I was approached out of the blue by a neighbor who has lived on our block for a year or two. I know her well enough to wave if she’s leaving her house but I don’t know her name. She rushed toward me calling my name and I was very taken aback, in my hermit-in-a-lighthouse manner. She then said that she had tried to call me several times. I don’t know if it was her manner, or just the way I interpret things because of my depression, but it sounded like an accusation that I had been deeply negligent. She explained that she had been trying to invite me over for tea with another neighbor with whom she enjoyed afternoon tea.
I just felt like I couldn’t understand what I was being asked. Tea? Afternoon tea? With you? How? What? On what planet? Doesn’t she know Sarah is dead? I felt like some terrible, embarrassing error had been made, as if she had mistakenly invited the village idiot, or someone with Ebola virus, over for tea. I wanted to make this as simple as possible for her. “I’m sorry, I’m not socializing right now. But it was very nice of you to think of me.”
Then I just went home and got in the shower and started crying. Part of me felt very angry too. Why the hell would she think I would come over for tea? I have a dead child. This is not a normal time in the history of the universe. I cannot do normal things. I cannot drink tea.
I realize this is not me at my best. Perhaps me at my best would have gracefully accepted her invitation, or made some social noises as to how lovely that sounded and we should all definitely get together soon, what a nice idea, and let me drop off my cell phone number the next time I am out. Ultimately I could have finessed the actual tea and been busy or working or sick or something.
Or let’s face it, maybe my attitude is the reason I’m lonely a lot. I push people away. I’m prickly. People don’t meet my standards. They don’t do things “the right way.” She made me angry by not acknowledging Sarah. She did not come to Sarah’s funeral, did not send a card after she died, and did not say anything about Sarah when she invited me to tea, ask how I was doing Sarah-wise.
Isn’t it obvious that Sarah should be the center of everyones’ universe? Every conversation should be about her.
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Last Summer
It’s July. Last year Sarah was in camp for a couple of weeks after school ended and then went to Extended School Year classes for most of July and the beginning of August. She saw the new Minions Movie with us and Daniel and loved it. After that there was about three weeks until school started. We were all counting down together, trying to do some fun things but waiting for school to start. I called camp to see if she could enroll again in the last session, but they were all full for that session.
Daniel was in Spain visiting his relatives. He and Sarah Face-timed several times. We went to the mall, to Build-A-Bear. We watched a lot of YouTube and played Minecraft. It was a boring mid-August. We went to a couple of doctor and dentist appointments, and I made plans to take Sarah to have her eyes examined for a new eyeglass prescription on August 24. We shopped for new school clothes.
I wish we’d done more things. I wish we’d gone to the Jersey Shore that summer, where we hadn’t been since the Pandemic started. I wish we’d gotten together with Aisatu, who’d been her friend since Kindergarten, but who now lived in a faraway suburb. I wish I’d just tried harder and done more to fill up her days. Gone to the pool every day. Made sure she got out of the house. Done…something. Done everything.
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The First Year Without Sarah 