Our Baby, Our Revelation


Cedar and I went on a date this weekend, which is no small thing. It requires us to arrange two people to care for our children, because E. still needs 1;1 care for almost all of her waking hours. Since we have the nursing help covered by our insurance, we’ve been making a regular practice of a Saturday afternoon outing together, just the two of us.

It was the kind of cool, bright, sun-swept day that makes living here in the North feel like a great decision. Cedar and I walked around Lake Harriet, just like we used to do years ago, before we had children, although back then we walked it almost daily. The date started out with an argument—never a good way to begin anything. But through the conversation we realized something big; we both need more time for what we love, beyond our family.

It’s music for Cedar. He’s been practicing downstairs during nearly every spare minute that he can carve away. Over the past few months, something reignited. And now, after thirty years of playing the saxophone, he can’t get enough.

For me, it’s always been this writing thing. I’ve had a crush on writing since I was ten years old. The kind of crush where you’re afraid and sweaty and still can’t stop thinking about it. I dressed up that year as Harriet the Spy for Halloween, because at that time, I thought she was a real person and I hoped that maybe we could meet someday and trade stories.

As Cedar and I passed the beach on the south side of the lake, just after the kiddie lemonade stand, we discovered something else. E.’s condition—her fragility, her joy, and the intensity around it—that’s the reason. She’s the reason we want to create all of this now.

We didn’t argue anymore, after we talked about that.

Then we sat near the sailboats and drank the best beer I’ve had in a long time. We also shared some cheese curds, which is the kind of thing I usually want to do but eschew in the name of health (which I am realizing, is probably faulty logic).

The thing is, our girl makes us want to live more boldly. The struggle that she faces makes our daily lives unexpected. Surreal. Everything is fleeting—of course, we have always known that. But now, we know it in a way that is like when you look in a mirror and you can’t believe that’s really you. You can’t believe it’s your face, your eyes, your shirt, your life staring back at you, but it is. Life and death, huddled together, sharing a soft bed with the unknown.

Right now, it’s time to do something, anything, to make it all worth it.

I guess, simply put, E. gives me a lot to write about.

There are times when caring for her is like mainlining oxytocin. It inspires a certain kind of full bodied love. It’s utterly primal.

Caring for E. can also be lonely. The many hours where it’s been just me, her, a rocking chair and an unending night. Like when I used to go in there to hook up a 45 minute stomach tube feeding and then hold her upright for another half hour, praying that she didn’t throw up. Getting up in the night, again and again, to stroke her forehead. That kind of time has it’s own kind of desolation. Sometimes, before any light has swept through the windows, when I hear her cry, it feels like there’s no one else awake anywhere in the whole world.

And yet, one of the best moments of my life was in the dark, in that same chair with E. She was maybe four or five months old. I was nursing her to sleep. Just before she fully conked out, she put her warm little hand on my chest. She took that bitty palm of hers, and rubbed it, softly, on my skin below my collarbone. Then she pressed it into me, like she was smoothing a wrinkle on my shirt. She fell asleep with her hand above my heart, her body heavy against me. I felt then as if everything made sense. We were in it together for a reason. Or, even if we found out that there wasn’t a reason, we would find a way to make one up.

6 thoughts on “Our Baby, Our Revelation

  1. Lovely, E. Your writing, your love, your family; Cedar, Olly, Etan, you. Your courage and strength and honesty and stamina. All you do. All of it. You are blessed. I am grateful to be inspired by you and your family of fierce fighters—not just the four of you but your wonderful extended family too,


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