The Giving and the Getting


E. is doing better every day, but she’s still in the hospital. Amazingly, she’s totally crawling now. And getting up on her knees for the first time ever. For a baby that’s been laying in bed for days, we have no idea how she’s managed to hit multiple developmental milestones at the same time.

That’s our girl.

Our garbage disposal broke a few days ago while I was scrambling eggs. I was trying to clean the fridge out at the same time as I was cooking breakfast. I had hardly slept, I was sick. I was in that almost manic mode that I can get into when I’m pushing through exhaustion, with no time to take care of myself. I pulled the egg shells and old chicken out of the drain with my hand, threw it in the garbage and started some coffee. All of the sudden I felt that this was the last straw, another thing breaking. I cried in the kitchen, right next to the sink.

Later, I called Cedar and told him how angry I was with him for being gone on tour for weeks, right in the middle of all of this. How I felt empty and without hope. I said that I couldn’t stand it any more. I told him that there could be no redemption now, not even if he got on a plane this minute, because our girl’s been in the hospital for so many days and sick for six months. Cedar listened, like he almost always does. He said, “You have every right to be angry, I would be too. And how could you be doing well under these circumstances? That would be weird.” And then, after we talked for a few minutes, his non-defensiveness, his kindness, his total empathy was all that I heard. I couldn’t be mad anymore, I was done with it.

Then we talked about how we were meant for each other. Because he gets it.

My life is exactly how I had hoped it would be, but then not really at all how I imagined.

Years ago, I had planned on being more of an iconoclast. I wanted to become a writer and live an unconventional life. Move out to a patch of land, maybe with some friends. Grow vegetables like a hobbyist and flowers like a boss. Find a loving partner, and raise children. Work for social justice, say things that need to be said.

I’ve always wanted children. I wanted three. I don’t remember ever discovering that I had a desire for mothering, or ever reconsidering it. It has simply been there, like the way that I laugh.

It’s really strange, getting older. Seeing how things shake out. There is no farm—Cedar and I chose to live in the city, mostly because we like to walk places. But I very often lust after living somewhere more wild, somewhere with more trees, especially after a day of too much sitting or too much talking. I just want to walk near a river and remember how fleeting everything is. I want to be quiet.

And of course, I didn’t plan to have a child with so many medical needs. I don’t think anyone plans on that. Right now, during another almost two-week hospital stay, it all feels like a cross between a spiritual calling and a fork stuck in my eye.

The doctors say that maybe tomorrow E. will go home. There have been a lot of days where they talk about her leaving tomorrow. Her breathing is better and she hasn’t been on oxygen since, I think, Tuesday.

I don’t mind all the talk about tomorrow, even when it spans more than a week. It’s kind of like how A. conceptualizes tomorrow, which for him means any day in the near future. You know that I am looking for all of the hope I can get.

A doctor the other day told me that she didn’t want to get my hopes up about the new feeding tube being a panacea. I said, “I really do. Let’s go with it.” Because I don’t know what harm feeling good today is going to bring me and my family.

It’s become clear that E. is too sick to try the new feeding tube right now, so we’ll wait for a few weeks and try it outpatient. That’s the whole make or break moment for her, and the plan is to go for it at the beginning of November. Right around the make or break moment for this country with the upcoming election.

I’m really with her, in both cases. Even though neither option was my first choice (having my child live off a feeding tube or Hillary Clinton). But here we are. We work with what we’ve got.

So, yes, it’s likely that my baby will get to go home tomorrow. And if you ask me what she’s going to be for Halloween, I will say a healthy baby. Or as close to healthy as she can get these days. It doesn’t need to be perfect—I just want her off the pulse oximeter, with our family together again, living under one roof. She won’t even need a costume. I don’t have time to get her a costume anyway, and who cares.

Cedar is back now, finally, thank G-d. We’re ready to get back to our life outside of the hospital walls. The life that I sort of planned on but really didn’t; ever shifting and mind-blowing but not in the ways that I thought it would be.

Whatever I had planned on back then, years ago, with my amaranth seeds and my big dreams, I didn’t know much about love. What it costs sometimes, and what I would be willing to give (and then, in spades, get).

I didn’t know anything about what it would take to keep it all going.

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