The Thing About Soul


When another child, inevitably, begins to stare at E. when we’re out at the playground, I know that the mom is probably praying that their kid isn’t going to be the next one to point in my daughter’s direction and shout, “What is that?”

E.’s tube runs from her abdomen to a little black backpack which contains a pouch full of formula. Then sometimes we have to use another tube, too, that goes into her stomach and relieves the pressure. That tube fills up with…bile. Yep, bile. And that’s how we need to roll right now, since she’s still on a 24/7 continuous feeding regimen. We’ve got tubes, and we travel. And that draws some looks because, honey, we are not the norm.

There are moments where I long for a healthy, typically developing baby. Like today when the Music Together teacher who has worked with babies for years and years asked, “How old is she…nine months?” In that moment, I want the one that I imagined having, one who is cruising and standing and maybe even walking by now at age 15 months, eating a fistful of avocado. That baby has giant thighs, like a mini sumo wrestler. I want to be annoyed by the things that I thought I would get to be annoyed by, things like nap-time pushback and bouts of rogue sibling fighting and possibly even things like stepping unexpectedly on a Duplo pile, which actually hurts more than you might think.

Before we had E., I didn’t even know feeding tubes existed. Sometimes, lately, I half-joke to Cedar, “We’ve got problems we didn’t even know were possible.”

And then there’s an ever-growing part of me that sees that maybe this isn’t such a loss. Because now we have a free pass to give normalcy the middle finger, to eschew perfectionism for something more authentic. I would like to kiss those relentless, unattainable standards goodbye once and for all. Goodbye to the myth of the perfect family, goodbye to pretending that everything is easy and/or fun. It’s not easy. We do try to make it as fun as possible, although we are only sometimes successful, depending on the day and most especially, how much sleep we gleaned from the night before.

When I think about how much I absolutely adore E., then my sadness shifts. She is that strong, sweet girl that I always wanted. I can bring her anywhere and she’s waving her tiny hand hello at almost anyone who is willing to give her a big smile. She’s singing along to Ani DiFranco in the car with me and harmonizing to the Indigo Girls, just like I’ve been doing since I was 14 years old. She’s my girl, she’s tough and scrappy and full of grit. Plus we like the same type of comfort music (although she’s a bigger fan of Raffi than I am). She’s also probably the happiest person I know. I wish I was as happy as she is at any given moment.

This morning I brought A. on a stroller ride with me in his pajamas because I really wanted to get out for a walk. Cedar was busy changing out E.’s tubes and getting her cleaned up for the day. Since A. is four years old, and not really stroller material anymore, I let him use my phone to look up iTunes music almost the entire time we were walking. I tried to talk with him a little bit, although he was zoned out and basically high on the internet. I asked him, “What’s your favorite thing about this family?” And he said, with no deliberation whatsoever, “My sister.”

Maybe she’s the soul of our family. Maybe she gives us more depth and compassion. Even though sometimes I feel as if our soul is going to put Cedar and I into an early grave, from utter and complete exhaustion.

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