Lucky/Unlucky

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It’s been about a year since E. got her feeding tube, since she’s been living attached to an electric pump that squirts formula into her stomach nearly 24/7.

Right now our life is still a string of medications, appointments, and therapies. I have become, among other things, a regular at Walgreens, which I didn’t expect to happen until I was at least eighty-five years old.

We are working on solutions, always. But nothing has been able to get E. to where we’d like her to be—strong, gaining weight consistently, and eating food. Not throwing up regularly, not living attached to a tube.

There’s so many things I want to do with her that don’t have anything to do with medical interventions. This spring, I want to take my girl on her first camping trip. I want to research the best hot fudge milkshakes in the Twin Cities together, sip by sip, then drag her to one of Cedar’s concerts, even when it’s past her bedtime. I want to strap her in a front pack and kiss her on the forehead repeatedly while we try out a nearby hiking trail.

There are days when I don’t know what to write about anymore, because the weeks and months have been so circular. We had a short stint in the hospital since my last post, but I don’t even want to tell you about it. It was more of the same.

Some mornings, after a night of being awakened nearly every hour, I sit at the breakfast table staring at my scrambled eggs, making deep, dramatic sighs until Cedar says, “Are you okay?”

Some days I am okay, and some days, I would not use that word.

I don’t want to watch my girl suffer anymore.

And yet. E. is also, truly, the happiest person I know. She blows kisses to people—ones she knows and ones she doesn’t—like she’s living on a parade float. When she wakes up, she burrows her face into my neck again and again, pressing her whole little body into me. Even on her sickest, hardest days, she is more cheerful than most.

I think a lot about how lucky we are, even in our sometimes unluckiness. I do it to feel better, as a practice. But also, I believe it.

E. has incredible caregivers—both nurses and PCA’s. Her main nurse J. is basically a Jewish Mother Theresa, and that might not even be an exaggeration. If she was a place she’d be Southern California. She’s 75 degrees and sunny most every day, and optimistic like we live in a different era. Cedar, the kids and I have become connected to her and her thoughtful, big-hearted husband as if they are our family. The kind of family that everyone wishes they had, not the kind we occasionally end up with and then have to endure.

And also, E. is developing. My girl is starting to cruise around the furniture with the help of her little houndstooth orthotics. Most days, she learns at least one new word. Then, promptly after she says it, E. vigorously claps for herself, looking around for us to notice. Then, generally, A. announces, “Our baby just said water!” Or whatever word she just said. Which leads to more clapping.

I don’t know how we got so into so much clapping and yaying. It’s sweet and predictable and a little bit embarrassing.

***

After a year, there are still times when I am sitting at my desk at work or walking down a hallway, doing whatever I do in a day. And then all of the sudden I remember: my child lives on a tube. She does not eat. Usually this is followed by a flood of emotions I can only label as love. Primitive, all-encompassing love. Every part of me terrified.

I have no idea what the future will be like for her. It isn’t a given that E. will make it to age five. And if I let the enormity of that in, then I don’t know how or what to do with myself.

E.’s 2nd birthday is coming up soon.  So we are doing something that always makes me feel more hopeful about everything. We are planning an all-out dance party.

I’m not generally the kind of mother that throws big birthday bashes for toddlers. I don’t have the drive (or interest) to organize bags of party favors, or peruse Pinterest. I do not generally impress people with things that are cute. For A.’s 2nd birthday we had our immediate family over for barbecued chicken, threw around a few water balloons that my mother brought, and then got to the important part: kissing A. repeatedly and overdoing it with an enormous chocolate cake that was meant for at least twice the crowd.

But next month we are celebrating something rare and beautiful. Our girl has a genetic map unlike most anyone else in this world, and despite a lot of reasons not to, she has made it to age two.

We are going to hold the dance party outside, underneath the towering trees in our backyard. Children and babies and parents and anyone who loves E. can come and shake it with us. We are featuring a signature drink named after the birthday girl, and it will have a very high alcohol content. Before noon. Because at this point, I think that Cedar and I and all of the people who have supported us, well, we’ve earned at least that much. The kids can have juice, but on the day that my daughter officially transcends babyhood, I’m having a real drink.

So if you need me in mid-May, I might just be shaking it on the deck with my tiny, irreplaceable daughter in my arms. I’ll be surrounded by the people who have helped us live through this time, hoping to tell them again and again: thank you.

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