Between Worlds

I’ve talked many times over about how much I love living in downtown Bellingham for its accessibility, community feel, blah blah. But I’d be lying if I didn’t confess that one of my favorite perks of living downtown is that it’s easy to enjoy the nightlife, and y’all, I LOVE NIGHTLIFE.

Since I’m in my yawn-worthy mid-30’s, I’m often left to go out dancing and see shows on my own, which I don’t mind at all (let’s be honest, I just make friends with strangers). There is a certain appeal of kissing my husband and child good night, putting on pleather pants, and taking a vacation from my own life. When I walk out the doors of our building and into the night alone, I feel Old Jenn stretching her legs, and I can nearly revel in her naiveté.

It’s been unexpected. When I was pregnant, I’d anticipated that motherhood would envelop me completely, or at least substantially conceal life before becoming a parent.

But it hasn’t. And that’s probably because from the start, we’ve been living between worlds.

For the 42 days at Seattle Children’s Hospital after Luella was born, Mike and I were constantly given the same advice: “Don’t forget to give yourself some time away!” It was good advice: living in a hospital completely screws with your mind and taking periodic breaks is necessary to your own survival (actually, it seemed like terrible advice at first, because I was thoroughly insulted that the world had had the audacity to move on in the midst of my crisis, and it just really felt like the sun should have stopped rising and setting out of RESPECT).

hospital life, day 17

So we took breaks. We had family/nurses/doctors/volunteers who would watch Luella while we went to dinner and pretended to be normal, functioning people. I would put on makeup and ACTUAL CLOTHES and we’d go on these sort-of warped but amazing dates; I’ve never loved Mike more than I did in those otherwise horrible days.

Visiting the Real World was kind of awesome, but it always ended the same grim way: trudging back through the doors of the hospital, leftovers in hand, no closer to actually getting home.

Eventually I had to stop taking so many breaks. Living between worlds totally messed with my sense of reality; Hospital World seemed normal and doable until I suddenly wasn’t in it.

We are physically living in the Real World now, but it still feels like we’re only halfway to parenthood.

We go to the park or swimming pool every once in awhile, but our life still doesn’t feel very “kid”. And I’m probably not supposed to say this, but since Luella is generally happy, easily entertained and notably, doesn’t walk or talk (the jig is up, people), she’s suuuuuper easy to bring to pretty much anything we want to do.

As the gap ever widens between Luella and other kids, we have less and less in common with most other families. Whenever we hear, “You’re so LUCKY you can still do _______, we can’t take our kids anywhere!, ” I feel like I’m being exposed as an imposter parent.

We were prepared to make more sacrifices in our daily life than we have, but I promise we were planning to make them (although I suppose the PTSD and existential crisis I was provided with instead could be seen as my sacrifice, hahahaha SOB).

I’m trying to figure out what parenting between worlds looks like, and how to be okay with it. Luella just started her second year of preschool and it’s been a struggle to settle back into our place. I have complicated feelings about school, which range from “It’s really nice to have a few hours to get work done every day” to “It’s periodically soul-crushing to pick up your kid from school when they don’t seem to recognize who you are.”

What I’m learning is that rather than reject it, it’s better to hunker down in our weird little universe with the people who love us–and love Luella–and make this all feel normal and real.

new preschool backpack

I went to a hip-hop show by myself a couple weeks ago and ran into a server from one of our favorite restaurants. “You’re HERE?,” he exclaimed in disbelief, “Wow! You’re THE LAST PERSON I’d expect to be here!” It was a small, stupid interaction in which I felt misunderstood and specifically unfun (which…NO) and I’ve spent the last two weeks being insulted by it.

That is, until I realized he’d given me the gift of validity: despite my worries about not being a  “real parent”, to him I was a boring, one-dimensional, honest-to-god MOM. And he was halfway right: I got home at 3:00AM, then stumbled around cleaning up cat pee and comforting Luella during seizures through the night.

family things

family things

There is no parenting purity test, no checklist of what makes a Real Mom. For all its differences, parenting a child with a disability doesn’t make me a “half-parent”, any more than Luella is a “half-kid”.

Maybe living in between worlds doesn’t mean we have nothing, maybe it means we have the best of everything. I get Luella, preschool, swimming pools, enjoyable meals at restaurants, AND indecent rap shows? Halfway there might be a place I should start getting fully comfortable with.

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Luella Health Update: Luella will be starting the ketogenic diet in an attempt to better control her seizures. It’s a high-fat, low-carb diet that has to be strictly followed and will be monitored by the Keto Clinic at Seattle Children’s Hospital. Because Luella takes 100% of her food through a feeding tube, this should be a relatively easy change for us (but I promise, I’m still a real parent HAHAHAHAaaaah). It will require a 2-3 day hospital stay when they make the change to monitor her and ensure her system responds well. This diet has long been used to treat epilepsy and is an evidence-based, physician-recommended treatment.

We know NOTHING about whether or not this will work or if she could wean off of her other seizure medications. Currently her seizures are not dangerous or causing further brain injury, so we are not approaching this with a particularly frantic need for it to work. However, reducing the number of seizures she has could help to reduce other complicating factors and potentially help her developmentally. It doesn’t have very many downsides, so it is well worth a try!

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7 thoughts on “Between Worlds

  1. Ah Jenn, I love that you are blogging! It allows me to stay connected to what’s going on with one of my most respected mom’s as well as one of my favorite little kiddos! Are an awesome family

  2. Hey there, one of my friends posted your blog on FB. My daughter has seizures (and had a hemispherectomy) as well and we just started her on CBD oil. Have you ever thought about trying it? Loved your post. I’m surprised I haven’t run into you when I too am escaping life!

  3. “For all its differences, parenting a child with a disability doesn’t make me a “half-parent”, any more than Luella is a “half-kid”.
    THIS. SO. MUCH.
    love you lady…

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