Good Bad Days

So, pretty exciting life update: I’m currently writing this from a hotel room, which is the first time I’ve ever stayed at a hotel by myself. While I’m an OMG, NO JOKE kind of extravert, alone time is a necessary part of my survival.

It took weeks to be able to do anything alone after Luella was born, well into her Seattle Children’s NICU stay. I’d had a longish labor, followed by a c-section (as it turns out, that’s kind of major surgery?). Then I was plagued with terrible stomach pain.

While we were in Seattle, I visited the Urgent Care, convinced my appendix had burst (as it turns out, my appendix is on the other side), only to find that I’d only–but still very painfully–pulled a muscle in my abdomen (and also, that the gigantic bump on my arm I’d dumbly assumed was a spider bite was actually a staph infection, so it was just really NOT A GREAT TIME).

baby Luella and a NOT spider bite on my arm

When I could eventually twist around enough to pull out of a parking spot, I took the opportunity for my first solo escape.

Obviously, I went to Target.

It wasn’t without purpose: for weeks, I’d been washing my hair with the antibacterial soap mounted in the hospital’s showers. There was, of course, shampoo available somewhere in the hospital, but I simply couldn’t coordinate my crisis-laden self to retrieve it.

I hadn’t been alone since Luella was born and the drive was eery. No beeping monitors. No hushed voices. No intercom announcements.

a moment of current hospital quiet

I turned on the radio, expecting one of the handful of songs that Mike and I’d heard each time we’d gotten in the car, those that became inextricably linked to Luella’s post-birth story (the result of which is that, improbably, Blurred Lines can move me to tears and Avici’s “Wake Me Up”, well just don’t GET ME STARTED).

Instead, Macklemore’s Same Love began to play. Somehow, I’d never heard it before (for those unfamiliar, it’s about LGBTQ rights and was released during Washington’s campaign to legalize same-sex marriage).

I’d been being really, REALLY brave through some terrible news in the weeks prior. Like freakishly, I-am-obviously-not-okay brave (after we learned that Luella’s MRI showed a brain injury, I maniacally talked at Mike over lunch about how we’ll just learn sign language and “we’ll make videos for our family to learn how to sign every week and we’ll just BUILD ALL THE WHEELCHAIR RAMPS AND DO ALL THE THINGS AND THIS IS FINE RIGHT RIGHT RIGHT LIKE WE CAN DO THIS RIGHT?!?!?!?!”).

four weeks

But the song. Well, it was too much. I pulled over and sobbed on the side of Roosevelt Way, realizing that I was going to love and raise a daughter who wouldn’t necessarily be loved or accepted or SEEN by the world. 

And then the song ended.

I pulled myself together and drove on (that sounds overly cool and stoic. In reality, I drove 15 minutes past Target while lost in my own thoughts and then became frozen in indecision alone in the shampoo aisle because no one should ever present a person in crisis with like A MILLION shampoo options and expect them not to crumble in this totally controllable and thus seemingly ABSOLUTELY CRITICAL SITUATION).

Four years later, we’ve just finished Luella’s first multi-day hospital stay since birth as she switched to the Ketogenic Diet. Before we left for Children’s, friends gently questioned how I was preparing to handle staying there again. I was like, ‘Y’all it’s going to be TOOOOOTALLY FINE! I don’t understand why you would think this would be a Whole Thing!”

Ahem.

pre-hospital cat goodbyes

24 hours into our latest stay, Luella was happy and tolerating her new diet, but I was bored and MEH. I desperately needed to be anywhere else. When I took a solo trip to a nearby coffee shop, I’d still been vehemently denying that our 6.5-week long, TOTALLY TRAUMATIC hospital experience could possibly be a factor in this stay.

I drove in self-defeating silence for a few minutes before I turned on the radio. The song started from the beginning, as though cued by the universe’s jukebox: Macklemore and Kesha’s Good Old Days. It’s about nostalgia, regret, and reminiscing. It’s about how your entire life will change and you’ll miss everything it USED to be. It’s gentle, celebratory, and SAD.

It seems obvious now, but the parallel Macklemore moment was the first time I actually really linked the two hospital stays.

As it turns out, sometimes it doesn’t matter how emotionally and logistically prepared you are. It doesn’t matter if you rationally understand that “this time will be different”. You can’t untether yourself from The Thing Before.

Our experiences compound, one on top of the other. Even when we stack the pieces gently (or with smuggish confidence), we can’t escape those annoying foundations.

leaving the hospital behind

Macklemore probably isn’t my spiritual guide (although imma be honest, it’s possible Kesha is). But that moment of musical connection allowed my brain to do what it hadn’t done before: accept that even when things are better, it’s okay–normal, even–that they’re still sometimes really hard.

We’re back home from the hospital and Luella is great. And you’ll probably be COMPLETELY shocked, but I miraculously feel better.

At Luella’s next inevitable hospital stay, I’ll be less flippant and work on saying, “Yeah, this might be hard.” I’ll probably plan some solo trips outside of the hospital ahead of time. I’ll prepare for life-altering realizations around Macklemore’s next album release.

It’ll probably still be tough, but it might be better. Even this time, I can at least celebrate one major success: I only used antibacterial hand soap for one of my showers.

Luella Health Update: She’s officially switched over to the Ketogenic Diet! Keto has been proven to be an effective means for seizure control, so we are giving it a try. Normally, your body uses glucose, made from carbohydrates, to produce energy. The Ketogenic Diet is EXTREMELY high fat, forcing bodies to create energy from fat instead. The process of converting into “ketosis” can be a little tough (mainly fatigue and nausea), so Luella’s doctors wanted to monitor her while she went through the process.

No, we don’t know for sure if this diet will work for her or how long it would take to work, if it does. We don’t know if she would be able to wean off of her seizure meds. We’ll just keep watching to see if her seizures seem to be better controlled or if she demonstrates improved development. 

One thing to note: it is very easy for her body to get out of ketosis. For this reason, she has to have keto-friendly soap, chapstick, sunscreen, etc. So, if you see us tackling someone spraying anything on or near her, well…it’s for good reason.

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