The Long View

Mike and I were recently driving home from the beach when we passed a large, beautiful garden filled with roses a few blocks from our house.

“Wow, is that someone’s yard?” I asked Mike.  “I wonder if someone new moved in?”

 Mike gave me a sidelong glance and asked disbelievingly, ”Are you joking?”  

I wasn’t.

As he explained, the Cornwall Rose Garden has been there since we moved to our house in 2008 and we have passed it, both walking and driving, probably 500 times (upon doing some research, I found that it’s been there since 1916, so MY BAD).

Beach walk

Adventure walk (no, not to the Cornwall Rose Garden)

Mike and I have long recognized the differences in our literal world views. Whereas I notice people, feelings, and interactions, Mike notices, uh…railway systems?

It’s especially obvious when we compare our vacation pictures, which appear to be taken on separate trips: my camera is full of vibrant photos of people and animals, while Mike’s are mostly landscapes and boring still lifes.

Same View: The Chicago Bean

Same View: The Chicago Bean

That being said, Mike and I are pretty much aligned on the way we view Luella: as…Luella.

Nevertheless, as Luella gets older our view of her versus other people’s views are growing increasingly disparate.  Since most people expect two-year-olds to be able to pretty expertly walk and talk, her disability is becoming more noticeable.


There are more stares, more questions, and more impossible conversations about the upcoming “terrible two’s” during which she will apparently “run around the house and scream ‘no’” (spoiler alert: she will do neither of those things at two years old).

I’ve been simultaneously dreading and preparing for this shift for a long time.  Admittedly, most of my preparation has consisted of imagining myself COMPLETELY ANNIHILATING someone who uses the “R” word to describe her (for no apparent reason I always, ALWAYS envision it happening in the baking aisle of the Meridian Haggen).

Thankfully, this hasn’t happened.

Luella and Mommy

But for the first time, I WAS bluntly asked, “What’s wrong with her?” which came as a shock (although I may have been more prepared with some bags of powdered sugar around).

I’m accepting that we are now firmly in a place we’ll be for a long time, probably forever, where some people will see what’s “wrong” with Luella before they see anything else.

Earlier tonight, Mike, Luella, and I went out for beer with a friend and her two-year-old daughter.  At some point, her daughter referred to Luella as a baby, to which her mom replied, “Luella’s not a baby.  She’s a big girl, just like you!”

Big girls: Pippa and Luella

Big girls: Pippa and Luella

There have been many, many occasions when kids have wrongly called Luella a “baby” and no one has corrected them.  There have been an equal number of times that full-grown adults have talked to Luella in nauseating, widdle baby-waby talk that makes me uncontrollably cringe (and, although it may be my imagination, causes Luella to giving her withering scowl).


The Scowl

On the worst days, it sometimes feels like Mike and I are standing alone, watching Luella from some desolate viewpoint.

But then there are nights like tonight, when we find that someone is standing right next to us, seeing Luella from the same perspective.  And when that happens it’s hard not to notice that while our life isn’t a bed of roses, it’s not exactly a field of cactus either.

Health Update: After months of dealing with insurance, Luella was partially approved for a pediatric stander, which will allow her to stand up with support.  Our physical therapist is continuing to advocate that the ENTIRE stander be approved, including the stupid (and entirely necessary) $600 plastic tray that they refuse to cover.  SO.

We’re increasing one of Luella’s seizure medications in a further attempt to eradicate her tiny seizures.  They’ve decreased, but she continues to have a few an hour.  While it’s unlikely that she’ll be end up being seizure-free, we’re working to minimize them as much as possible.

We’re still working on oral feeding in therapy and at home, although my motivations for doing it have changed.  We’ve realized that Luella will likely always need her feeding tube, so after discussing with her feeding therapist, our NEW motivation is helping her to build eating skills so that she can enjoy the sense of taste and participate in food-centered social events, like birthday parties.  I love food, parties, and participation, so it’s the only motivation I need to keep trying.