Because We Are Not Dead Yet


I took A. to a play a few days ago at the Children’s Theater. As we were sitting in the lobby waiting for the doors to open, he whispered to me, “Why don’t you play dead.” So I immediately got into character (which character, I’m not sure) and let my body fall to the floor. I thought it was a pretty solid impression, especially for a public death scene. He goes, “That doesn’t look real.”

Where did he get this idea? He’s only three. How does my preschool son know what death looks like? I didn’t even know that he knew anything about death beyond the day that Simcha the pet fish (or was it Miriam?) died at nursery school and they sent an e-mail blast to all of the parents, warning us that mortality was now a concept that our children had some experience with.

It’s crazy but all of the sudden A. also knows about all kinds of things like jail and guns. From kids at preschool, I guess, or the few times we let him watch Lego City until we realized that it’s kind of like Law and Order for kids, except more violent. He learned all types of terrible things from that 56 minutes of his life such as how to label people bad guys and good guys and also how to have more nightmares and wake up his parents.

I try to keep my children shielded from the hard stuff, for now. They will have plenty of time to learn about injustice and pain.

What A. knows so far about E.’s condition is that she needs extra help with learning and growing. We don’t think he needs to be burdened with the rest at this point. Especially because so much is unknown about who she will become and what types of services and supports she will need over time. I’m glad that Cedar and I have kept him away from our tears and the multitude of doctor’s appointments. We’ve tried to keep him away from our stress but I know that we have only been partially successful. If that. Stress certainly has a room in our house, but we are doing everything we can to avoid giving it a whole floor.

A. also knows that we have teachers who come to our home to help his sister. This is a free service from the school district for children with special needs, and it’s actually been pretty lovely.

Each week these kind-hearted ladies sit down on the carpet with us in the family room. They sit there with us on top of the flecks of cheddar bunnies that are somehow ground as a base layer throughout every carpeted surface of our home, ever since A. became obsessed with them. We are living chametz.

The teachers began with weeks of assessment, questions like, “Is she able to hold a doll while combing her hair?” Um, she’s not yet a year and doesn’t have a doll and doesn’t know how to use a comb, so no. The assessment was the rough part. I ended up feeling like E. was farther behind then I’d thought. I wanted to quit.

Now her teachers are one of my best supports. They came and guided me in infant massage when E. had a cold and was teething and miserable and wouldn’t take a bottle no way no how and no one else was around. They’ve hugged me and laughed at my jokes, like the other day when I asked them “Which house are we going to next?” and pretended that I was leaving with them, while A. was home because of spring break and whine-crying louder than a middle school band concert.

Most importantly, they come into our house in the daytime when it’s just me and E. Because most of the time it’s just us and our physical therapy regimen and our feeding regimen and our regimen of packing up the baby stuff to go sit in waiting rooms. No amount of throwback children’s music like Free to Be You and Me or even Miles Davis changes that feeling. The loneliness. And worse than the loneliness, which I am actually surprisingly good at dealing with, is the guilt. The guilt is what gets me.

This guilt, it is something else. It’s not the same as when we first had A., when I felt some pressure to help him grow at a nice, steady, enriched rate. The guilt I live with now is supercharged, electric. Because so much is up in the air about her future, I am driven to do nearly everything I can to help E. Or, alternately, to sit with a pit in my stomach when I’m not living up to that standard.

And then there’s the guilt that in doing nearly everything I can to help E., I am somehow hurting my other child. And that takes up a lot of mental space. Which leads to some positive things like taking him to lots of plays (something we both love) and some questionable things like playing dead on the lobby floor of the theater.

Sometimes, I am at peace with all of it, the guilt and the loneliness and the work and the love. Especially when it’s seven thirty at night and both kids are in bed and Cedar and I talk about what happened that day and what didn’t happen and what we want to happen tomorrow. I’m at peace when it’s just me and a blue sky and I remember to look up. Or when I’m spending time with my sweet mother, who always smells as if she just took a shower, or when I’m walking with one of the other wholehearted women in my life. The ones who know what it’s like to wake up six times in a night and still go to work or do whatever needs to be done to take care of the youngest and the oldest and anyone in between.

I’m even at peace when I’m sitting next to A. watching some campy kid’s theater show with just one set, one actor and a whole lot of monologue. Especially when he puts his 3-year-old hand on my arm at the beginning of the show, and just rests it there almost the whole time. He asks the next day if we can go back and do that again. And when he asks, I’m so glad that we could do it again, even though we won’t, we won’t ever be exactly there back in that moment. But regardless, I’m thankful that we are here, most of the time, even though every day seems more like a week.

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