• Pain Pill

    So Max and I are trying to make some plans to go out of town next week for the anniversary of Sarah’s death. We’ll be going up to New Jersey, down the shore as they say there. I’m trying to keep my expectations low.

    We went “down the shore” for several years before Sarah was born, and did things like wandering through the Atlantic City casinos, going to the movies, walking on the boardwalk, and of course spending time on the beach. Eating soft custard and pizza and cheesesteaks and stuff like that. Listening to Bruce Springsteen.

    Our vacation week will also be Max’s 6th sobriety anniversary on August 15th, so I should find a way to celebrate that, maybe take him out for a nice dinner. He had a long period of sobriety from the time he was a teenage alcoholic, through adulthood, over 20 years, and then he got addicted to opioid pain pills for his back pain. I didn’t really know he was having this issue. It’s amazing how much you can make yourself oblivious to or rationalize away on a day-to-day basis.

    I remember he would sleep so deeply it was impossible to wake him up. I’d be shouting his name and he wouldn’t waken. Sometimes he would have fallen asleep sort of half on and half off the bed. I would just think, “Oh my poor husband was so tired he could hardly make it to bed.” It never ocurred to me that he was abusing pain pills. His back and his neck hurt and he needed medication. Of course, this was how hundreds of people got addicted to opioids.

    I feel bad that I never sensed anything wrong on my own. I finally found out about his opioid addiction when he lost his job due to a bizarre series of events. Max started confiding in his office-mate (let’s call her Jane) about his addiction and depression and writing her emails about it. This was 2017 and it was during the Me Too movement. Jane told her superiors she was being harassed by Max and his company fired him for harassment. He had to come home and explain to me being fired for harassment of Jane, why he was emailing Jane that he wanted to throw himself in front of a Metro Train, and then tell me he wanted to go to Rehab for opioid addiction. It was a lot, and I mean a lot, for me to absorb. There was some other stuff I’m not going to get into here, but it was a pretty bad time in our relationship.

    Max went to rehab and he’s been sober since 2017 and he goes to AA meetings every day now. We also went to marriage counseling to deal with the fallout of all this crap and decided we wanted to keep trying together. And we have.

    I wish sometimes lately I could take pain pills for my grief. When I was in the hospital with meningitis they gave me Versed and morphine and I just was out like a light. No worries, no thoughts, just sleeping. That seems very appealing. There should be a pain pill for grief. But there isn’t.

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  • Meeting

    Last night we went to our second meeting of Compassionate Friends and I have to say it really hit the spot this time. We stayed downstairs in the church where the meeting is held with the “experienced grievers” instead of going upstairs with the beginning grievers and I think that was a better match for us. The experienced grievers affirmed my feelings about Death Month and wanting the world to just stop everything to acknowledge Sarah in some way. I also felt affirmed in my feeling of not liking any of the things I used to like. Maybe it made me feel better just to know that it’s normal to feel bad?

    My favorite part of the meeting was the end, when we all held hands in a circle. The leader said “Now we are going to say good night to our children.” It was so special and wonderful. One by one we said good night and told our dead children how much we loved them and missed them. It felt so good to say “Good night sweet girl, mommy loves you, sleep tight” like I used to do every single night. And to hear Max saying good night to Sarah again. After everyone was done saying goodnight to their kids of all ages, Max and I hugged each other a long time.

    Even though it was pretty late for us when we got home (10 pm), I didn’t feel exhausted. I felt peaceful and I felt better. Not so glum and not so angry.

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  • Death Month

    The Parks Department contacted me that Sarah’s memorial bench is ready, and they want to meet us at the park to consult on a spot on where to put it. So we are going to do that on Tuesday August 8. It would be nice to have the bench in place sometime around the anniversary of Sarah’s death on the 18th. Even if it isn’t in place for a while, I can go visit it with Polly on our walks, and tend it and leave flowers and tsatskes and stuff. I’ll be the weird lady at the park who yells at people for putting their feet on the bench. Maybe not.

    I’m trying not to be so prickly. A friend emailed yesterday to invite me out to lunch and I just felt so angry. This is August! It’s Death Month! I couldn’t really put my finger on what my expectations of my friend were, what I wanted from her. I feel like I want everyone in the world to wear a special button or badge, or put a special signature line in their emails acknowledging Death Month. I just want some acknowledgment.

    We also have our second meeting of Compassionate Friends tomorrow evening. They told us at the last meeting that the month of your child’s death you are welcome to pass around some pictures of your child and you can also, if you want to, bring something your child liked to eat for the group snack table. When she was really little Sarah liked to eat cupcakes and cake and cookies. I suppose I could just buy something like that and say “Please enjoy these cupcakes from Sarah.” I guess that’s acknowledgment.

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  • Poo

    It’s August. I know I haven’t written in a couple of days. It’s not you, it’s me. As I told Max last night, I just can’t bear my own relentless negativity right now and I don’t see the point of exposing other people to it. I’m the poo and everything feels like shit. I think I was the only person in the theater on Saturday who didn’t like Oppenheimer. I can’t find anything to watch on streaming TV anymore, not a single documentary or series. Everything feels bad. Yes, I know that’s my depression talking.

    Max said, be the poo and look up out of the bowl at the water and the air. He was trying hard and I have to give him credit for running with the analogy the way he did.

    Last night I dreamed I was in a clothing store with a little girl, not Sarah but another little girl I happened to be caring for, and she had an accident and soiled her clothes. (Sorry, there’s a lot of poo in today’s post.) I was trying to clean her up and then take her to get some ice cream. It reminds me now as I’m typing of an incident that happened when I was very little, maybe three years old. I wet my pants on an outing with my mother, my brother, and a friend of my mother’s. The friend of my mother fashioned a sari for me out of a beach towel (we were on a picnic somewhere, maybe Hain’s Point) and I wore that instead of my wet clothes. We ended up in Georgetown getting ice cream with me in my sari. It seemed to turn into a special day.

    I guess my unconscious is trying to find something good in all this. Or trying to nurture that little girl part of me that feels like shit? Clean myself up and take myself out for ice cream? I just want one thing to feel good today.

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  • Me

    I was talking to my Dad yesterday, and I told him that I’m starting to not like writing anymore, that it doesn’t feel good and I don’t feel like I have any good ideas anymore. He suggested I take a break and not push myself to write every day unless I really feel like it. That sounds reasonable. But nothing really feels good right now and I don’t want writing to become another entry on a long list of things I no longer feel like doing and stop. Reading the newspaper. Doing the crossword. Posting on Facebook. Having any libido. Wanting to go out at night. Wanting to look pretty. Wanting to be around other people. You name it.

    Dr. Z says that’s my depression talking. I don’t know what to do other than listen to it, and it’s pretty boring. It makes books I read seem pointless and food taste bad and everything I do seem pathetic and shitty and pointless.

    I don’t feel very much in touch with Sarah right now. Yesterday I was thinking that if Sarah were to come home, she would be bewildered. She would say “Where is my beautiful mommy?” (She always thought I was beautiful). “Where is the mommy who dressed nicely, bought me pretty clothes, laughed, sang, went places all the time, ate healthy food, and was fun to be with? Who cooked and took care of me? Who is this not-fun, sad, schlumpy frumpy Mommy?”

    I miss that person too, and I would like to get her back. I can’t quite think of a plan right now to get back on track. I want to. I really want to. I want my daughter to recognize her mother. I want to feel good again.

    I feel like I may have transitioned from asking “Where is Sarah” to asking “Where is me?” Where can I find myself? How can I find myself? I wish I knew.

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  • Pep Talk

    Back when I was in college I lived in a house for a while with about six or seven other female roommates and there’s one roommate I’ve been thinking about lately. I didn’t know her very well, I don’t think I even remembe her name, because I moved into the house when I got back from the France Exchange Program in the middle of the year. She was always depressed and very unhappy. She spent a lot of time lying around the living room eating strange snacks like sugar free jello mixed with air-popped popcorn. I had missed the drama (if there was one) that had led up to this ennui. Was it a break-up? Or just existential angst? I didn’t feel it was polite to ask for the back story or ask her to share the couch.

    Anyway one evening, this roommate was feeling particularly bad and was crying and weepy. She had written a letter to one of her professors, a person who it appears she considered a role model or perhaps a father figure, trying to excuse and explain why she hadn’t completed an assignment and didn’t have it to turn in on the due date. In the letter, she told him in detail how depressed she was, using a lot of metaphors to describe her depression, and basically pouring her heart out about how she bad she was feeling about herself.

    She had gotten back the professor’s response to her letter on the evening in question. It was not very nice. He basically said to her your confession and self-excoriation is tedious and not very interesting to read. As if her letter were a literary essay and he was grading her. I guess he was trying to keep his distance and maybe he was used to adolescents having extreme moments and didn’t really want to get involved? I don’t know. But it seemed cruel to me. He could have given her a little pep talk, told her that many people find the early twenties to be a difficult time and counseling can be very helpful and some such palaver. Or just told her to take extra time until she was feeling better to turn in the assignment, if he didn’t want to get particularly involved. She dropped out of school a few weeks after this incident and I always thought, what a waste. What a sad outcome when a few kind words might have been so helpful.

    When I was thinking about this yesterday, I kept turning it around and looking at it from both angles. People could probably find my writing about Sarah’s death, and about my depression and guilt and self-excoriation tedious and uninteresting. But maybe I’m the one who just needs a little pep talk, someone to say that the end of the first year of grieving is a difficult time, and I should take all the time I need to feel better. I do want to feel better.

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  • Button

    Button

    The book I was reading on The Grieving Brain said that the most predictive factor for prolonged grief is whether the grieving person was depressed prior to the bereavement. I don’t know, sometimes I feel like I’ve been depressed all my life. I’ve almost always had some downer shit going on with me. My neurologist says this is very common with people with left temporal lobe epilepsy and why he recommends anti-depressants. I remember when I was about 7 asking my mother what was wrong with Eeyore from Winnie the Pooh. Why he always seemed so sad and gloomy. She told me he was depressed. I felt like I finally had a label for how I felt. I wasn’t always depressed as a kid, but I remember some very bad years, especially 3rd grade and 5th grade, when I essentially had no friends and felt unable to cope with basic stuff, including hygiene.

    My parents finally sent me to a therapist when I was in 8th grade, and it was helpful. I dropped out at the end of the school year because I didn’t want to have to get up early to go the sessions or leave camp activities. This sounds like a typical move on my part. I don’t know why I didn’t go back. I should have.

    I asked my Mom why my parents didn’t send me to therapy earlier, when I was having so many problems during elementary school, both socially and academically. She said she had gotten advice not to “stir things up” for me prior to adolescence. I don’t know what this really means.

    I like this old picture of me I’m posting today. It’s my third grade picture and I’m wearing my hair in braids, like Sarah did a lot. For some reason, I hated having my picture taken in elementary school and I tried to get out of picture day. My Dad gave me a button to wear to ease my anxiety, so I’m wearing a “War is Not Healthy For Children and Other Living Things” button.

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  • AITA

    I’m tired of my own thoughts today, and it’s hard for me to imagine anyone being interested in them. I just can’t conceive of having to drag my ass around for another thirty years. No, I’m not suicidal. I’m just sick of myself. Bored, discontent, amazed that everything costs so much. Yesterday I bought two bags of those pretzel nuggets at Target that Max likes so much and they were $4.98 each. What? Pretzels? A bag of pretzels should cost about a buck. I don’t understand anything anymore.

    When did it all stop making sense? I guess that’s a tiny bit overdramatic, but I feel like life has lost all predictability. I wish I knew how I was going to feel in the morning when I wake up. Whether it’s going to be a good day or a bad day. I don’t feel like I have any control over it.

    Maybe I’m just being an asshole. Should I write to Reddit, asking Am I The Asshole because I cannot break out of this funk after my daughter woke up dead? Probably they would reject my submission. I wrote in to AITA a few years ago about a situation with Max that was bothering me, and the moderators told me my post was not compelling and specific enough, and they get so many posts that they have to limit the group to the really spicy ones. So apparently I’m a failure at assholery too? Figures.

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  • Foster Talk

    When I bought my car last summer shortly after Sarah died, trading in our wheelchair van, the young salesman was so happy and excited. It was his first sale and he’d been working at the dealership for several months. “You’re going to sell ten cars now,” I told him. I was glad to be his first sale and I left him a nice review on the dealership website. It’s good to encourage people in their early twenties; moving into the workplace from school is a very difficult time of life. And I do like my new car, my Frankie Sonata.

    I think my goal right now is to be as good to myself, as encouraging to myself, and forgiving of myself, as I am to other people. To nurture myself and be my own parent, like the good parent I was to Sarah. I kept thinking yesterday about the memory that came over me as I was writing this blog in the morning (see yesterday’s “Coverage,”) of soothing Sarah at the pool when she noticed other girls having a birthday party. I’m trying to soothe myself the same way. I kept saying to myself yesterday, like a mantra, “There are no little girls at that birthday party.” And hugging myself with my arms. It seemed to make me feel better whenever a wave of sadness or self-doubt hit me.

    Yesterday evening we attended a virtual informational meeting for Kennedy-Krieger’s therapeutic foster care program. It was a lot of information, possibly informational overload. There are kids with physical/medical disabilities who need respite and long-term foster homes, some need “forever” foster homes. There are kids with emotional and conduct issues, and kids with medical/physical issues. We indicated that our expertise and interest was probably with kids with medical and physical issues. They were happy and surprised because they said most potential foster families aren’t comfortable with those kids. We explained our background with Sarah. We were actually the only people attending the meeting so it was like a conversation.

    There’s a ton of paperwork, background checks, and interviews to get started. They do a home study. They do a financial study and a CPS check. I’m sure we would probably pass all these things, it just sounds very daunting. The program leader suggested we try respite care first rather than long term foster care, which makes sense. With respite care, the child would stay for a weekend or a few days, sometimes to give the regular foster family a break or in an emergency situation.

    My nurturing, pep-talking mom mind is telling me doing this could be good for us. That it would bring back meaning into my life. It would feel good to care for a child. The depressed part of me is saying, wouldn’t it be easier to just sit on the couch and watch TV? Don’t do this, it’s too much work. I’m just going to let it settle for a while.

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  • Coverage

    Coverage

    Facebook Memories reminded me this morning that I posted in 2014 about being turned down on appeal to our medical insurance to cover the $20,000 cost of Sarah’s whole exome testing. Whole exome testing was new and Johns Hopkins sent the test out to a private company called Genentech. This was the test that Sarah had in 2013 (really, our whole family had it, spitting into tiny little jars) that finally revealed Sarah had SPG4. But according to our insurer, the test had no diagnostic or therapeutic value and would not impact patient care in any way. Also, it wasn’t medically necessary or clinically appropriate. So they refused to pay for it. This was after an appeal, so we ended up eating the cost.

    There were lots of stories like this along the way, although I think we were relatively lucky with the insurance company. We had coverage for all her surgeries and procedures, and they also paid for her Sleepsafe bed after I wrote two appeal letters and gathered various Letters of Medical Necessity from physical therapists and doctors, and they paid for her wheelchairs.

    They didn’t want to pay for any other chair besides her wheelchair. They seemed to have the notion that she should just sit in her wheelchair twenty-four/seven, but we appealed and appealed and they finally paid for a Rifton activity chair that she used for a few years.

    Surprisingly, they paid immediately for a therapeutic bicycle for her when she was really little, one of those tricycles that you see disabled kids riding around on, and she really loved that. When she outgrew it, we gave it to another disabled kid we knew who did not have such good insurance.

    Like many families in our situation, the only luxury vacation we ever took was our Wish Trip. Other than going to the Jersey Shore, not much was accessible for us. There was an amusement park in Texas called Morgan’s Wonderland which was created for kids with disabilities that I always wanted to try with Sarah. But the idea of flying to San Antonio with Sarah’s wheelchair was really daunting. I always heard horror stories about wheelchairs being destroyed by baggage handlers.

    I wish we had done more. I wish we had been able to do more, especially the last few years, which were during the pandemic. I don’t think Sarah especially wanted to travel during the pandemic; I think she wanted to go back to school and be with her friends, which she finally did in the last year of her life. I reassured her as much as I could that no kids she knew were in school while she was out of school. That she was not missing out, that kids were not going to school without her.

    A memory just came over me. Sarah and I were in the pool together swimming. She was in kindergarten or first grade. Sarah was floating on her back and I was supporting her and she noticed that there was a birthday party going on in the gazebo on the pool grounds. She pointed and made an upset face. I told her “Those are big girls, like Fourth or Fifth Grade. Those are not girls you know. There are no little girls at that party.” She relaxed and went back to floating.

    I always tried to protect her, to make her feel happy. Sometimes I feel like tending Sarah equalled tending the part of me that wanted to be mothered the right way. Loving the little girl inside me who did not want to be excluded from the party. I wish I could find a way to still do that.

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