The First Year Without Sarah

One of the things you’re supposed to do in therapy for prolonged grief is try to reframe the “death story” in a way that alleviates your feelings of guilt, anger and depression. That sounds sort of wishful and magical but I’m working on it.

As my long-time followers know I struggle with the fact that I was not home when Sarah died, and the belief that if I had been there she would somehow have been okay. That I would have saved her or helped her. That I should not have left her. That somehow I failed her. That I just suck as a mom.

In order to reframe this story, I guess I have to believe that Sarah’s death was in some way inevitable and I couldn’t have done anything about it. That it was destined to happened with or without my presence. Or, on the other hand, that Sarah’s death was somehow the best thing possible for her given the fact that she was in pain and had a neurodegenerative condition.

The first part of the “story” feels a little scary to believe because I always felt I could protect her and keep her safe. That I had the power to protect her. I guess every parent believes that. You are in control.

The second part of the “story” feels ableist somehow. Why would it be for the best that Sarah died? She was in pain, but she seemed happy. She wasn’t on her proverbial last legs. She hadn’t given up. This part of the “story” makes me thing of the people who say, She needed you to leave the house so she could go, and she wanted to spare me. Maybe I should start to believe that. Maybe it would help me.

So, I have to rewrite this story to believe that it was her time to go, that I had no control over that, there was nothing I could do about it, and it was for the best for her, and for the best that I not be there. Seems like a lot to swallow.

Sarah had a children’s book called “Today I Feel Silly” written by Jamie Lee Curtis which explored and named different moods and emotions and it was kind of fun. I looked for it a little while ago but I couldn’t find it. It must be around here somewhere. She had a couple of books by Jamie Lee, there was another one called “I Like Myself” or some such encouraging sentiment.

I’ve been sitting here thinking “Today I feel shitty” and in the manner of Jamie Lee’s prose, wondering what rhymes with shitty. Witty? Twitty? Ditty? Permitty?

Ugh. The thought came to me the other day, I can’t bear another summer. Another August. Another anniversary of Sarah’s death. Will it get better? When? What do I need to do? Tell me and I’ll do it. Maybe we need to move away and start over. But wouldn’t that just be harder? I’m too old to start over anyway.

Today I was asked what stage of grief I’m in. I really have no clue. Am I a veteran griever at this point? I still feel like I’m in denial sometimes. I feel angry, I feel depressed, I feel guilty. Who knows.

I’m at the stage where everything is about Sarah. I scroll through my Facebook looking for things that remind me of her. I look for TV shows about grief, death, dead children, the afterlife, and missing kids. I look for books like that too. Why isn’t everything about her? What else is there? What else is interesting?

I did have a reasonably good time this weekend seeing my friend and getting manicures together and seeing my brother who was in town. It’s possible to lift myself up. I just feel like such a death junkie sometimes. I expect everyone to die. If Max sleeps late, I assume he’s dead. Same for Polly if she’s taking a nap and doesn’t come running when I open the fridge.

Sometimes I wish we had a grave for Sarah instead of cremating her, although I know cremation was the best decision. I really wish I dreamed of her more often.

The first year after Sarah died, my brain was so busy trying to figure out where she was. It was like a puzzle I had to solve. I thought about it all the time. Was she still alive in some form or another? How? Would we see each other again? Was she well cared for?

The other day it struck me that I don’t think about this whole conundrum that much anymore. Does that mean I’ve accepted her death? Maybe it means that primitive part of my brain has accepted it can’t find her and has stopped searching.

It’s been a super-stressful week. Just a lot of stuff going on with work, with my “foo,” my family of origin, and a lot of feelings. The accident with the bridge in Baltimore for some reason made me feel just terribly sad. People alive one minute and then dead the next.

I had another session with the Parakeet Lady today, my new therapist. She said not to worry about feeling crazy or having strange thoughts during the grieving process because no matter how strange and crazy my grief feelings might be, someone else grieving had them too. That felt very comforting.

Max and I walked into our downtown yesterday. I’ve been trying to get out of the house more and I told him I was going to walk to the center of town and he offered to walk with me. We had a really good time which sort of surprised me. I’m not sure why. I always fall into this trap of thinking we won’t have anything to talk about anymore with Sarah gone. But we talked about this and that, politics, neighbors, trivia, who knows. We laughed a lot. It was fun.

Things usually turn out better than I think they will. My self-undermining is a big issue. Maybe there’s a better way of describing that. Anxiety? Catastrophic thoughts? Negativity? Stinking Thinking?

I’m still working on motivating and centering myself as well. Finding things that are fulfilling. I recently watched a documentary about a famous liver transplant surgeon, Nancy Asher, and it made me fantasize about becoming a living liver donor. I fantasized about part of my liver living on in someone else’s body long after I died. Sort of like having descendants. But I don’t think that I would be accepted and probably I don’t have mentally healthy reasons for donating . And it looks terribly painful. So maybe I’ll just investigate Tai Chi or something like that.

I had my first meeting with the Parakeet Lady yesterday, my new talk therapist. The parakeets were not in the room or maybe she covered up their cage because I did not hear them. I told her all about Sarah, and her death, and she asked me a lot of questions about her, her development, the history of her diagnosis, her likes and dislikes, our relationship, what we liked to do together, and so forth. Some questions were painful to answer.

She asked me how I explained Sarah’s disability to her. That brought back a lot of talks with Sarah, and I’m not sure I always did a good job, and I felt guilty. I explained to Sarah what “cerebral palsy” was (we didn’t know about her genetic disorder when she was little) and we read several books about it and about kids who had it and so forth. But a lot of times we talked about how it wasn’t fair that she had CP. And other kids didn’t. That was a big issue for her. When I would put a voice to that thought, she would cry deeply. And I would hold her and say yes, you’re right, it’s not fair. And I would make sure she knew that it wasn’t because she did anything wrong or bad. It was just because of no reason at all. Some people have disabilities or illnesses.

Anyway, the Parakeet Lady and I talked, and covered the main issues right now. Feeling unmotivated. Feeling uncentered. Feeling unable to move forward. Prolonged grief. Inability to meet new people due to death stigma. Inability to connect with old friends. Inchoate anger. Guilt.

I can’t say I felt an immediate bond with her or anything but I will continue next week. I just want this to be helpful.

This morning when I was walking Polly and she was sniffing around in the daffodils that are growing now at the edge of our lawn near the street, I noticed a little bit of plastic on our lawn. I bent down to pick it up, thinking the wind had blown it from the neighbor’s recycling bin. It kind of looked like the long thin cap that used to come on the end of Sarah’s feeding tube bag.

It was so strange to hold it in my hand. A little thing can bring back such intense memories. Fill the bag with formula. Thread it through the pump. Prime the pump and set it to run at the correct speed. Turn it on. Hear that soft whirr whirr whirr. All gone now.

And it was a cap for a feeding tube bag – an enteral feeding bag. We gave away or disposed of all of Sarah’s medical supplies after she died, so I was surprised to see it. We used to throw away the feeding bag and the tube and the cap daily. Maybe this one blew out of the recycling one windy day years ago and I just saw it.

I watched a movie yesterday about death. I didn’t know it was about death when I turned it on. It seemed to be about a young gay man who was having trouble with relationships. “All The Right Strangers.” But in the film, his parents have been dead for 30 years and he is still seeing and talking to them. I was very touched by it, although it was a sad movie. Who’s to say how long someone should mourn, and in what way.

Part of me wants to think that the feeding tube cap could have been left for me by Sarah. A little sign from her that she was thinking of me. A little “I love you Mommy.” Keep your chin up.

This is a political post about current events. If you don’t like reading them, feel free to skip over. I try to avoid getting dragged into debates about Israel/Palestine/Gaza online, on Facebook and so forth. Facebook seems to be the village square of our time, from where all ugly squabbles generate, and while I’m not immune, I try not to get involved (not always successfully) but much more so since Sarah died.

I think American Jews my age have a complicated relationship with Israel, almost a love/hate relationship. Speaking only for myself, I can’t stand Israel’s policies and practices toward Palestinians, the apartheid, its expansionist occupation, if you will. I do believe Israel has a right to exist and I can’t unravel the threads of history and who has a better claim to the land. I don’t have any history with Israel, no relatives there, and I’ve never visited. Jews my age are too old for those Birthright trips that were started for teenagers and that kids seem to go on now as a matter of course.

I have friends on social media who post ardently pro-Palestian messages and friends who post pro-Israeli messages. I’ve abstained from “liking” either one. But last night something really got to me, and I dived into the fray. Maybe foolishly. A friend from college copied and posted a long screed against Hamas with the notion that ceasefire was up to Palestine, not Israel. No reactions to the post for several days. Then suddenly another friend from college jumped in and posted a very angry response. I can’t copy the response because he has subsequently blocked all of us as friends. It said something like “This is just propaganda! IDF soldiers have killed 15,000 Palestinian children. We Jews are guilty! The Talmud calls upon we Jews to atone on Yom Kippur for “being zealous in pursuit of a bad act.”

To the best of my knowledge, the friend (ex-friend) who posted this is not actually Jewish. He’s a gay man who has always stepped up and kind of role-played for other oppressed groups. For instance, I remember once when we were in college together and it was Passover and the cafeteria had not served any Matzoh, he offered to go speak to the cafeteria manager with me about it. (I was quite soft spoken then.) I remember that he told the cafeteria manager “We really need the Matzoh in order to celebrate our holiday.” It felt good that he was taking on the mantle of Judaism in my support. I can see him doing that for other oppressed groups as well. He’s a terrific person. And fun too. When we were in college, he started something called “The Gumball Religion.” We were all devotees. It involved, to the best of my recollection, going to the gumball machine in the Student Center and praying for certain colors of gumballs.

I have not seen him since graduation, but I’m sure he’s out there, empathetic and fun, and his heart is always in the right place. But with regard to this post, I responded that I felt he was being anti-semitic. That I didn’t understand why all Jews needed to atone for the bad acts of Israel or the IDF. In my opinion, his placing the blame on all Jews was the essence of anti-semitism. That if I had something to atone for, please let me know what it was. I feel so much guilt for the death of my own child. I really don’t want to have to take on the deaths of 15,000 other children.

I understand that all Americans fund Israel, and perhaps should atone for that, but Jim was singling out Jews to atone, and aside from this post, Jews in America are starting to feel like we are being blamed for the actions of IDF. But many of us don’t support those actions at all. Many of us, like me, desperately want Israel’s actions to stop. If a kind, sensitive person like Jim can make that mistake, what are actual bigots thinking?

I go to bed very early these days, and I’m not sure what happened after my post. Whether angry words were spoken and nasty posts exchanged. When I got up, Jim had unfriended all of us. That’s sad.

All of a sudden, it feels like there are things happening to me. I don’t believe in that crap about manifesting the “you” that you want to be or however that mantra goes, but I seem to be doing and trying more things. A friend of mine (Hi Margaret!) invited me to go to a David Sedaris concert with her next month. I’m also supposed to start therapy with the parakeet lady next week. I signed up to go on an afternoon coffee thing with some other women next weekend, despite my fear of meeting new people.

I also sort of made a new friend, online. I read a post by her on Facebook describing the loss of her child and I really thought for a moment that I had written it. Her son was medically complex, with a genetic disorder. She talked about feeling like she used to love her life and now her life is empty. She talked about her guilt and her anger and anxiety. Wow.

It turns out my new friend runs a virtual support group for grieving moms of medically complex children. It’s just getting off the ground and she invited me to join. I’m very happy to find that group.

It’s spring, and it’s good to feel hopeful. Or at least less angry, less sad, less guilty. More better.

I had a very intense dream last night that I was riding the Metro with an old friend but every time we got close to our stop I couldn’t find her or she disappeared or made an excuse. It’s made me reflect on friendships today, or really the lack of them. It’s not my friends’ fault. It’s my responsibility too.

I do get messages from people that say things like “We think about you and Sarah every day.” Or “We are holding you in our hearts.” “Reaching out with an abundance of caring.” “Holding you in the light.” And so forth. Several people like to send me links when the New York Times prints articles on grief and grief support. Okay, I get it. You are doing your due diligence.

I have friends who reach out to socialize as well but it’s hard. I don’t accept many invitations and I feel like I have to put on something of a show. I don’t feel comfortable meeting new people because I don’t want to raise the subject of having a dead child, especially an only child.

My friend Regina wrote me a letter that I got yesterday. She lives in Germany. She wants to visit this summer and bring her adult daughter. I haven’t seen them in a long time and it would be great to have them here for a visit. I’m scared, though. How do I balance friendships now?