BEST DAY EVER

Almost three weeks ago, Mike, Luella, and I boarded a plane for Greenville, South Carolina and embarked on our muggiest adventure yet: a month in the Southeast.

We made it through a full day of flying, a 1:00 a.m. Uber trip to Wal-Mart for snacks (and terrible, terrible beer), and settled in to our Airbnb STILL LIKING EACH OTHER AND EVERYTHING.

Sky high

Sky high

Since then, we’ve driven through the Blue Ridge Mountains to Asheville, North Carolina and then to Chattanooga, Tennessee where we are now planted while Mike works for a couple of weeks.

Luella has proven herself a worthy traveling companion, contently sleeping on the floor of our 375-square-feet apartment and riding in her stroller through what any bona fide Pacific Northwesterner would describe as “an actual inferno”.

Luella has also been amenable to spending her days doing mostly atypical kid activities, and so we’ve been thrilled to be able to visit 7 breweries, a Monet exhibit, and a couple of live music shows.

First baseball game

Looking out at the Chattanooga Lookouts baseball team

In truth, we don’t do a lot of kid-centric outings when we’re at home, either. Library storytimes and swimming at the community pool are the notable exceptions, although I still consider them only mild successes.

But her first playgroup—for children with developmental delays, no less—was a complete failure, culminating in the children and adults running out to the playground en masse, abandoning us alone inside with a book (we like to read at home, but without social ostracization…or pants).

The truth is, Luella usually doesn’t care or notice much whether we’re doing “kid things.” Sometimes I still try, but I feel twinges of guilt when I realize I’m doing it more for my benefit than hers. I’m cautious of trying to mold Luella into someone she’s not, turning her into a prop while I pretend to be playing at a more typical motherhood.

The Wicked Weed. Asheville, NC

The Wicked Weed. Asheville, NC

So when we arrived at Chattanooga’s aquarium and I discovered her napping in the stroller, it was a real quandary: do I go inside, accepting that she probably wouldn’t have noticed much anyway, or wait for another day?

I turned around and journeyed back to the apartment (okay, it’s like a 7-minute walk, but you guys, I’M SO HOT), knowing I was fully stepping into “you’re-pretending-she’s-going-to-be-into-this-like-other-kids” territory.

When we returned to the aquarium the next day, she was awake.

And, despite the fact that I don’t really like fish, turtles, crabs, sharks, or snakes, it was the BEST DAY EVER.

stroller

As it turns out, the aquarium is an ideal place for people who are sensory sensitive and have cortical vision impairment (and who also don’t experience a crushing anxiety when stuck in a muggy room, surrounded on all sides by a shark-infested abyss). The exhibits were often hushed and dark, except for the water and the slow-moving fish that swam right up to the glass.

Ready for this jelly

Ready for this jelly

The jellyfish exhibit, which I might have previously considered a torture chamber, was a particular hit: a completely dark room, black water, and glowing jellyfish.

At one point, I pushed Luella’s stroller right up to the aquarium’s glass and sat on a bench behind her. After a few minutes, I sneaked a look at her face, expecting she’d dozed off. But no, there she was: mouth open in awe, eyes concentrated on the swimming fish.

Seeing undersea

Seeing undersea

I share a lot of time with Luella, but that doesn’t necessarily mean we always have a shared experience. Sometimes I can easily understand what she feels or wants. Other times, especially when we’re in an environment that’s new and stimulating, I’m not sure how aware she is of anything that’s happening around her.

But sitting together at the aquarium, both of us mesmerized by the fish, I realized there was no nagging voice. This was not pretend.

This was my daughter and I, experiencing something together. 2,000 miles from home and 20 feet below the surface, we’d found our depth.

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Health Update: Luella FINALLY has her pediatric stander!  Her physical therapist will show us how to use it when we get back from vacation and then she’ll have it at home.  The stander’s primary role is to help with bone density in her legs.

One of our main activities right now is helping Luella to learn cause and effect. Teaching cause and effect involves putting her hand on a switch to trigger a toy’s noise or light.  Hopefully, she will eventually understand her role in making the noise/light and begin to do the movement herself.

We’ll be looking into getting Luella her first wheelchair soon.  Strollers aren’t really enough support, she’s getting heavy, and some of our favorite restaurants aren’t super stroller-friendly.  Clearly, benefits abound.

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P.S. You may have noticed Luella had a haircut!  No, that’s not a wig in the before picture.

Hair before and after

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