The First Year Without Sarah

I had a dream about Sarah last night, which is so unusual. She was a baby in the dream and I was trying to get her to daycare, somewhere far away from our house. I was carrying her in my arms and I had lost her stroller somewhere along the way. She was so placid in the dream, so calm and confident in my arms that I would get her there, even though it was one of those dreams where we were encountering endless weird obstacles to get her there. She just looked up at me with the big blue eyes she had as an infant and a contented expression.

It made me feel better, because lately I’ve been torturing myself with obsessive thoughts that somehow I was mean to Sarah and didn’t respond to her needs. I know this wasn’t true. She was the one and only person in my life I was always always totally devoted to. But I torment myself that I wasn’t. Sometimes I think this is a way of keeping connected to her, these obsessive and tormenting thoughts, like I’m trying to create new memories. But they are painful.

The painful and false obsessive thoughts make me want to eat. To have something to just numb them away. Which isn’t a good cycle because that just ends up making me feel bad too.

So I’m in a shitty cycle right now and trying to figure a way out of it.

Today while I was out and about, I stopped to have lunch at Panera, and a woman approached my table rather shyly and embarrassedly. She said, I know this is a very strange question — and at first I thought it flashed through my mind that she was going to ask me something about Sarah’s death, and then I thought she was going to ask me if I color my hair, and who does it, or something like that. And then she asked me if I ever worked as a teacher at Temple Sinai Pre-School.

I said no, I’m sorry, and she said “Well, you look exactly like someone who worked there when my kids were little,” and I laughed politely and said “I’m sorry” again and she rushed off. And I sat and thought that I really am off my game, because I wished I had just said yes, and asked her kids’ names, and she could have told me how Jordan and Michelle are doing these days, or whatever their names are. And whatever colleges they are going to, Cincinnati State or Wesleyan or Montgomery College, and I could have sent a big hug and kiss from Ms. Mordechai, or whatever name I made up for myself. I really could have run with it.

I looked up Temple Sinai Pre-School when I got home. At Temple Sinai Pre-School, through gentle facilitation, attention to individual needs, respect for unique learning styles and temperaments, our children grow in self-confidence and in the ability to relate to one another. In a safe and secure learning environment our children develop their curiosity and learn to experience the world in an expansive way. At the core of our program is a belief in the importance of developing strong social-emotional skills during these magical years of early childhood.

I want to go there myself.

I really wish I could start over sometimes. Just do it all again. Rewrite my whole autobiography.

Yesterday was the Second Annual Gilbert Games at Wheaton High School, held in Sarah’s memory. We had a good day there. The event was actually much bigger than last year. This year there were kids with disabilities from seven different county schools who were bused in. The administrators told us they had schools all across the county calling and wanting their kids to participate, even up to an hour bus ride. Wow.

The kids all had t-shirts this year that said “Gilbert Games,” in different colors for the different schools. The teachers and helpers had black t-shirts too. We got yellow t-shirts for the Wheaton team. The event was better organized this year too, with kids coming over to the medal stand (our responsibility) as a group) and then rotating to their next event. As always, my favorite event is the pool noodle javelin.

We saw Danny, and hugged him. Mrs. Locastro, Sarah’s teacher, said he had been crying that morning. Why do I always think that other people don’t remember Sarah? I shouldn’t.

I also saw John, a little boy (now a teenager) that Sarah went to ballet and swimming with. I hugged him and he remembered us. We saw another girl, Hasnat, whom Sarah went to preschool with.

There was one moment that I was sitting quietly, and for a second, I felt Sarah close to me. I really felt her physically there, like a movement of the air on my body. Then some kids approached us and the moment vanished. I told Max about it and he believes she would have been there, among all the excitement and happy kids, to see her friends and us, on a day about her.

Many bereaved moms I know seemed to have dreaded Mothers’ Day. I didn’t find it particularly difficult this year, any more so than any other day. I told Max to just get some flowers and a card from him and Sarah and that’s it, and he did a good job. A sweet card and some small purple blossoms, Sarah’s favorite color.

In the afternoon Max, my Dad and I met up with an old family friend for dinner. She has known me since I was born and there was a lot of reminiscing and silly stories about me as a little kid. “Remember when she ran up to the nuns in the supermarket and said ‘Look Mommy, tents!’”

I wasn’t feeling too badly. We did have to wait a long time for our food, probably because of the holiday, but whatever. We were actually eating at a restaurant in the neighborhood of DC where my family lived when I was a little girl. After dinner we drove past our old house.

It’s hard to feel like my whole life has passed by. I guess it must be even harder for my father, who is 91. Sometimes I just wish I could have a do-over. A better way to make it come together. I have to keep practicing my even-ifs.

I wish I could dream about Sarah. I’ve only really had a couple of dreams about her, other than the drug-induced feeling she was holding my hand when I broke my wrist. I had one dream where she was telling me she wanted me to love again, and another dream where I was holding her and swaying and rocking her. Both of those dreams were over a year ago.

My dreams that I remember are about finding myself in graduate school in some nameless place and being unprepared. I don’t know what I’m studying or where I’m supposed to live. I know it has something to do with Sarah’s death and the strangeness of my life, the dissociation I sometimes feel, the unreality. What is this place?

My youngest nephew started college last fall and he seemed to make a great transition to the school he chose. He found friends, liked his roommate, and got good grades. But he decided he wanted to transfer to another school, one where he felt the students would be more serious. For some reason his decision made me very uncomfortable and anxious. What if he didn’t like the new place? What if he missed his friends? Could he go back?

Last night my brother texted and said my nephew was accepted at one of his favorites and would probably accept. Again, bad anxiety for me and even some tears. I know this must be triggering me somehow. But he’s not lost. He’s not going to die.

People who can make these changes in their lives and still hold on to the past are brave. It’s important to be able to do that. Right now I feel very old and unable to transition very well to new experiences and people. Too much fear of loss. I’m trying to incorporate a little bit of newness, but it’s hard.

One of my many readers contacted me today concerned because I haven’t been blogging and checking on me to make sure that I’m okay. That was kind of her. The truth is I’m not sure why I took a break. I know I feel a bit better. Sometimes. When I don’t feel shitty. That’s the way it is to grieve. Two or three good days and you feel like you are really turning a corner, getting better, moving forward. Then you have a really hard day and you feel like you’ve started over again.

I do feel like I’ve made progress with the whole guilt issue and all my endless self-recrimination over not being here when Sarah died. I’ve started to feel a little softer about all that stuff. I’ve kept up with swimming laps at the new pool. It helps me a lot. I’ve also lost 15 pounds and that makes me feel good.

On May 17, Sarah’s school, Wheaton High, will have the Second Annual Sarah Gilbert Games in her honor. It’s the special Olympics for the kids with disabilities. Max and I will be going again to hand out ribbons and watch, like we did last year. I can’t believe it’s been a year already.

Years are going to pass, more years, and I will never see Sarah again. That’s so painful. I have to live with that pain and manage it. I’m doing okay, I guess.

So here I am feeling a bit better right now and thinking fewer guilty thoughts and ruminating less about the day of Sarah’s death. I really hope this lasts and is a trend rather than a cycle. Grief tends to come in waves and I guess it’s inevitable that I will get down again, but I do think I’ve turned a corner, somewhere.

I started swimming laps at our new Aquatic Center in my town in order to give my wrist some more physical therapy and strengthening. It made me realize that I really haven’t been in a pool by myself, just to really swim, in water over my head, in years, really since before Sarah was born. Doctors used to ask me what I did for exercise and I said I swam several times a week, but I didn’t really swim, I took Sarah into the pool, held her, played with her, encouraged her to kick her feet and splash her arms and play. It was exercise, but it wasn’t the kind of solo swimming I do now that’s enjoyable because it sort of clears your mind and thoughts.

I missed this. I used to swim laps before Sarah was born, not all the time, but from time to time. It’s good to have this back.

Is it scary to say that there are positive effects to my child dying or not being here anymore? To say to myself, I have the freedom to go to the pool now and only think about me. Yes, it’s scary. It’s a huge step.

It makes me think of a time when Sarah was a little infant, a few weeks old, and I was talking to my mom on the phone, telling her how great everything was going. My mom must have picked up on something — she had a strong bullshit meter — and she said to me “You know, it’s okay to have negative feelings too. This isn’t easy.” I cried then.

So I’m trying to wrestle with the new, and the fact that it’s okay that it may be better than the old in some ways. That’s okay. It may make me anxious, but I have to deal with that.

This may sound like it was written by Yoda. I guess a lot of my posts lately have been a little airy fairy.

I’ve been thinking about the difference between fate and destiny. This started after I watched an interesting documentary series on HBO about motifs in cinema. The narrator, who is a film professor, talked about the hero’s fate and the hero’s destiny and how those themes commonly play out in films. It was a little hard to understand. But fate seems to be the forces that move you forward to where you are. You can’t control your fate. It is behind you and you have gotten to where you are because of fate.

Destiny is before you and within your control. The hero/heroine controls and makes their destiny and that is what drives the film.

At least I think that’s right.

So my fate, which is behind me, was to lose my child. She died. I was not there, I can’t control that, it was my fate, it’s in the past, I have to accept it.

My destiny I can shape. What will be my destiny I’m still not sure. I don’t want my destiny to be depression and sadness for the rest of my life.

The key to dealing with the constant “what if” thoughts that grieving parents ruminate on, so I’m told, is to refocus yourself with an “even if” thought.

Because I find myself harping on the notion that I shouldn’t have been away from home when Sarah died, that I could somehow have prevented her death if I had been here, I’m trying to refocus myself.

Even if I had been home, I couldn’t have kept Sarah from dying. I don’t have the power to hold back death.

Even if Sarah hadn’t died that night, she probably would have died very soon after. She had a progressive neurodegenerative condition.

Even if I wasn’t there when Sarah died, it’s best that I was not there to witness her dead body.

Even if I was away for a couple of days, that was not the cause of Sarah’s death.

Even if Sarah did not like her babysitter, that was not the cause of her death.

Even if I was not home when she died, she knew how much I loved her.

Both Max and I are trying to get out and do more things. The Parakeet Lady wants me to try to do some new activities and Max’s sponsor is also pushing him to get out more and do more things outside the house.

We talked about the fact that this is really hard. I feel stigmatized. I feel like I don’t bring anything to the table. I don’t have much to say and I’m afraid of being asked how many children I have, what people who have lost a child refer to as “The Question.”

Max brought up an issue that hadn’t occurred to me but it was a good point. He said that he’s afraid of experiencing more loss. New people and new relationships mean the potential for more losses.

It’s hard to bond to anything new right now. I have signed up for an Aquacize class so I can strengthen my wrist. Hopefully I can get myself out of the house and go. I also registered for a Make-a-Wish Banquet. Keep your fingers crossed.