FOR-EH-VER.

When I was in 10th grade, a guy delivered an unforgettable presentation at our high school assembly. It was about the dire consequences of…something (sex? drinking?), which we were warned would stick with us FOR-EH-VER.

Over and over, he repeated it: FOR-EH-VER. FOR-EH-VER. I’ve long forgotten (and probably instantly forgot) the critical lesson, but the punchline has lingered, well, you know.

The issue with trying to convince people that something bad will last forever is that it’s impossible to understand the length of forever until we’re in it. We necessarily convince ourselves that good things will last forever and that bad things will eventually change.

It’s how we end up doing things like getting married or driving through Everett during rush hour.

forever grins

After Luella was born, my brain glitched trying to compute “forever”.

At first, it came as a question: “Will it be like this forever? Forever ever? What about like, after forever?”

When it became clear that the impacts of Luella’s brain injury would be long-lasting, the answer came as a foreboding threat: “Yes. It will be FOR-EH-VER.”

And after years, it’s largely settled in as a reasonable, unthreatening matter of fact:

“Yes. This is forever.”

forever babes

It’s this final approach that seems to be the most unnerving for others.

Periodically, people still hopefully ask, “Will she ever walk?” to which I’ve always truthfully (and a little brazenly) answered, “No.”

It’s not the answer people want. Or accept.

“B-b-but, brains are amazing! You never know! One day! IT COULD HAPPEN!!!”

Aghast at my hopelessness, they cheerily convince themselves that maybe forever isn’t FOR-EH-VER.

Nothing is actually forever, of course. There will be more or less medicines, different diets, changing doctors, more frequent or fewer seizures, etc., but the basic fact remains, that this is a permanent condition that will significantly impact Luella–and us–for her entire life.

forever selfies

I don’t wander into FOR-EH-VER very often but I periodically (and often inexplicably) find myself there. FOR-EH-VER is depressing, expensive, and UGH.

“It will be like this forever. FOR-EH-VER. FOR-EH-VER,” I repeat to myself.

And finally, when I’m like, “Why am I so SAD?!” I realize where I’ve ended up and I force myself to walk back into reality, into right now:

Happy, toothy-grinned Luella, laughing at the cat licking her hand.

forever friends

Here, FOR-EH-VER is just forever, but mostly it’s just really not that important at all.

FOR-EH-VER may work as a threat (although it’s likely I immediately did whatever it was that assembly warned against). But now that I’m in it, I’d much prefer to ignore the vast, looming expanse of time ahead of me entirely, thankyouverymuch.

Instead I’ve found that sinking very deeply into Luella as she is, at this very moment, is my best bet.

Perhaps the lesson here is that good things and bad things sometimes last; sometimes they don’t. Shrug.

In fact, when I look ahead, I’d venture to say only one thing is totally certain. Poorly-executed, fear-based school assemblies? Those memories really will last. FOR-EH-VER.

Luella Health Update: Luella’s doing great! Since starting the ketogenic diet and adding another seizure medication, she’s much, much more aware and engaged. She’s very smiley and easy to make laugh. We’re just having the absolute best time.

She is not, however, sleeping. Which means…no one is sleeping. We’re not entirely sure why, but we think she may be hungry so her doctors just increased her daily caloric intake.

Luella’s muscle tone has been stiff–a common effect of cerebral palsy–so she just began a medicine to help loosen her up, particularly her legs. It comes with a slightly increased seizure risk so it’s a slow build to a regular-sized dose, but so far we haven’t seen anything out of the ordinary. It also comes with the possibility of drowsiness (I mean, not the worst thing given the “HI NO ONE HERE HAS SLEPT FOR 6 MONTHS” issue).

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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.

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.

_

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!

Nice List

Stashed in a plastic tub on the top shelf of my closet is a pile of old journals. If you were to stumble upon them hoping for something salacious, you’d be sorely disappointed: they’re travel journals, the only kind I’ve ever kept (i.e. pages of me complaining about being too hot and the details of all our meals).

I stopped keeping journals after we started traveling with Luella, not because our trips are any less worthy of documenting, but because the time I would normally write I’m now, you know, taking care of my kid.

pre-Luella: León, Nicaragua, 2011

And so, on our trip last month to Boston/Providence/NYC I took hundreds of pictures, but didn’t even attempt a journal. Instead, I came back with a single list of hastily typed entries in my phone, titled:

Nice Things I Heard and Saw People do in NYC*

(*In the spirit of honesty, that’s not actually the title. The actual title is a decidedly less sweet “the guy passing out gentlemen’s club flyers just looked at Luella and lovingly said ‘God bless her’” because iPhone automatically titled my list after the first sentence I wrote)

family photo, taken by a kind stranger who stopped and offered, unprompted

I had not planned to write a “nice” list. Planning a trip with a kid who uses a wheelchair has been a source of frustration and resentment. Airports, subways, hotels, Airbnbs…they’re just generally ill-equipped for someone traveling with a chair.

By the time we left for this vacation, I’d already been in several AirBnb spats and a heated email exchange with Disney’s Lion King (please, do allow me to destroy all the fun!). I was preemptively irritated by NYC’s criminal lack of accessible subway stations–literally, they’re being sued over it–and was prepared to ruin vacation with heavy sighs and heavy wheelchair lifting.

vacation exhaustion

No surprise, we didn’t find state-of-the-art, or even run-of-the-mill, accessibility. Having to only use wheelchair-friendly subway stops was sort of a pain, as was relying on the station’s elevators. While they were mostly working, the elevators were sometimes hard to locate and smelled almost universally of urine (although sometimes we were pleasantly surprised to find they instead smelled of a freshly-smoked cigarette).

But we DID find people. Really, really good people.

In fact, better than good. People who were proactively, unceremoniously so kind and helpful, they moved me to start a list about them.

People regularly jumped up to offer me their seat on the subway and let us pass the restroom line to get to the accessible stall (I know it’s well within my right to do that, but my dad instilled in me such a strong sense of line-respecting morality that it really helps to have someone just shove us ahead). A security guard who saw Luella and I struggling to get through a crowd stopped everyone and waved us through, yelling, “LET THE LADY GET BY, JEEZ LOUISE!”.

magic

It was magic: anytime we came close to a set of stairs, someone nearby would stop and ask if we wanted help carrying Luella up. And almost even better, when we said “no”, they left us alone (none of this, “I wasn’t sure if you needed help! Do you? Oh, you don’t? Are you sure? Can I grab that for you? Are you sure? PLEASE LET ME HELP YOU!!”)

On one occasion, I carried Luella in my arms up a long flight of stairs while Mike lugged the wheelchair by himself. As Luella and I watched from the top, a man sprinted up behind Mike, grabbed the other end of Luella’s wheelchair and helped heave it up the steps, without so much as a single word or taking out his headphones.

But it wasn’t just us.

My sappy list ballooned to include other people’s kind interactions, not least of which was a slickly-dressed man who interrupted his own conversation to gently ask a person who was homeless, “How are you doing today?” and then ACTUALLY WAITED FOR AN ANSWER, like a real, decent person.

love and happiness, Brooklyn

Yes, it’s easy to be a pollyanna on vacation, because…VACATION. I’m also aware that I’m traveling with lowest common denominator in terms of garnering help and politeness; I’m sure there are awful people who aren’t very nice to small children using wheelchairs, but I’ve yet to meet them. And yeah, NYC still needs to fix its terribly inaccessible subway system.

It’s really, really easy to make a list of things that suck. And I’ll continue having to make lists of things that suck, and then try to fix those things, because that’s what it means to be Luella’s parent (and also a worthwhile human being).

But I’m not going to pretend that nothing good ever happens. It does. People are periodically lovely, and I want to remember that.

the good

I’ve kept journals of useless travel details, as though I’ll ever need to recall that one time I ate ice cream, at that one place, on that one day when it was too hot.

The NYC museums were great, the food was fabulous, it was actually a little cold, whatever. The single, smuttily-titled list on my phone is what will be this trip’s lasting memory: complete strangers, doing nothing spectacular, but being just plain nice.

__

Luella Health Update: Luella is finishing her first year of preschool, which has been amazing! She’s more social and aware, and has had been having fun with friends coming over to play. Her seizures seem to be lengthening a bit so we’ll be working with her neurologist on medications and adopting her new ketogenic diet. Nothing too outside the norm. For anyone who is wondering about our insurance issues, we’re now on Molina (thank you to Washington State for expanding Medicaid to include kids like Luella regardless of income) and it is AWESOME.

 

What if

Since having Luella, I’ve learned how to do a lot of things to raise a child with special needs (nbd, I’m totally cool with the metric system now). I’ve also learned an important lesson in what NOT to do: indulge in the parallel universe.

In the parallel universe, your kid does all the things you expected her to do. You watch her take her first steps, you listen to her singing sweet songs, you film as she performs in her first ballet recital (it’s here that I crawl under a blanket and never come out).

It’s a dangerous place to live.

no place better

no place better to be

I do not–as a rule–let myself wander into that universe. At this point, it doesn’t even usually occur to me to go there. When I look at Luella I don’t see her as an alternate version of what she was “supposed” to be, any more than you probably look at anyone you know and wonder what they might be like WITH a brain injury.

That being said, I do have to take care to keep myself from getting drawn into “what could have been”. On particularly masochistic days, I’ve even stooped to browsing pictures of myself pregnant. I don’t relate to the wide-eyed person in the pictures, who cried when Mike stretched out a pair of baby socks after the baby shower, because my god, WHAT IF THE SOCKS ARE TOO BIG?!

It’s almost painful to cringe so hard at my own naiveté.

this person doesn't know how to use a syringe

this person doesn’t know how to use a syringe

I don’t want to be caught off-guard by another Great Disappointment and so I’ve tried to shield myself from expectation in pretty much every realm.

And I thought I was succeeding, until November 8, 2016, when I found myself alternately drinking out of a bottle of champagne and watching slack-jawed as Donald Trump celebrated his utterly unexpected presidential win.

I definitely don’t mean to imply that the grief experienced after having a child with special needs is even in the same realm as watching your candidate lose (even when it’s in the absolute worst of ways). My heart shattered very differently; but both times, it was left in pieces.

finding comfort post-defeat

finding comfort post-defeat

For 72 days, I’ve tried not to think of what could have been. I can hardly bear to see the “Woman’s Place is in the White House” playlist I’d envisioned dancing to with my best gals after the Big Win. As I paint my protest signs for the Womxn’s March on Seattle, I’m trying not to imagine where I would have been during inauguration had the results been different (although it’d likely be in Washington D.C., with one less middle finger tattoo than I have now).

This week, the parallel universe is sucking me into it’s orbit. It’s the inauguration, it’s the day I spent with Luella and some of her typically-developing peers at preschool, it’s the agony of watching our future Secretary of Education refuse to advocate for the rights of children with disabilities as I am literally feeding my child through a tube.

the future

somewhere out there

For so long, I imagined Luella in that parallel universe alone.  

But now I see her walking hand-in-hand with a valiant, beautiful, and fierce President Hillary Clinton, both shaking their heads in disbelief. Their presence is contradictory: one a reminder to normalize differences and practice inclusion, the other to defy the normalization of hatred and practice resistance.

I will not squander my time dwelling on what-ifs. But practicing acceptance also means accepting that some soul-crushing things will continue looming, like the damn parallel universe. And if it must, at least I can imagine that my what-could-have-beens are there together, strolling down the sidewalk, helping each other feel just little less lonely.

Luella Health Update: We are still working on communication with switches, pictures, and learning about cause and effect. Her neurologist would like us to start Luella on a ketogenic diet to see if it helps with seizures (they haven’t gotten worse, it’s just a new thing to try instead of continually increasing her dose as she gets bigger). She’s been practicing using her new crawler, which while not being used for functional purposes, is great exercise and a lot of fun for everyone!

 

Forget

Even before Marie Kondo came on the scene with her decluttering expertise, I’ve prided myself on being able to get rid of things. One of the perks of selling our house and moving to a downtown condo was delightedly freeing ourselves of about 50% of our possessions, most of which didn’t give me pause.

When I got to my beloved books, I ran my fingers across the spines, smelled the dusty pages…and tossed them in the Goodwill box.

In a past decluttering spree, I read about the guilt that comes with keeping “aspirational items”–things that represent what you think you SHOULD be doing, but never actually do–and the resulting freedom in getting rid of them.

My bookshelf in particular was an aspirational graveyard: Spanish workbooks, scrapbooking idea guides, and a how-to on Jewish prayer (literally called, “How to pray as a Jew”), which mocked my half-hearted quest for like, a higher purpose or something.

Meaning.

Meaning.

I’m Jewish, full stop. Raising my children to be Jewish was probably my only significant partner deal-breaker potentially only rivaled by chewing with your mouth open. Yet I’ve never really been able to get on the “G-d” and “prayer” thing, despite some sheepish efforts. Even so, I always assumed that I’d eventually find myself in the foxhole, frantically negotiating a deal with G-d himself.

But when It Happened, and Luella was hospitalized for 45 harrowing days after birth, how many times do you think I prayed? None.

How many times did it cross my mind to try praying? Zero.

This, despite that I had two lovely talks with chaplains (my favorite gravely lamented, “This is just shitty,”) walked through the hospital’s chapel, and was flooded with messages of prayer from friends.

I thought that I was maybe supposed to believe in G-d, but when it came down to it, I just…forgot.

Wing and a chair

Wing and a chair

So if inaction also speaks louder than words, then it’s confirmed: as I suspected, I’m an Atheist.

It was a lesson in recognizing it’s not just what I DO do (giggles) that matters, but also that the choices I don’t make–or even forget exist–have meaning as well.

Which is pretty much how I forgot to have another kid.

I’d been tossing around the idea of having another kid for a couple years, since I’m forced to answer “are you planning to have more?” at least once a week. Even when I was still hauling around Luella’s oxygen  tank and she had a feeding tube coming out of her nose, people would happily question, “So, when are you having another?!”, which I mean, ARE YOU SERIOUS RIGHT NOW.

12 weeks old. At dinner with an oxygen tank, feeding tube, and necessary coping mechanisms.

12 weeks old. At dinner with an oxygen tank, feeding tube, and necessary coping mechanisms.

Every few months at happy hour, Mike and I would check in to see if our *shrug* around the topic had changed, and found that we were still firmly in the undecided camp. We weighed the pros and cons, considering how it would impact everything from our living arrangements to future vacations (I can masterfully pivot any conversation to vacation).

“One day, I think we’ll probably just KNOW,” I repeated, urging myself to get comfortable with the no-plan plan.

Someone who knows something

Someone who knows something

And then last month, I found myself with the opportunity to move forward with a career change and take over an event venue management company. Mike and I spent hours discussing an expanded child care schedule, calculating how much money we could afford to put into a new business, and creating budgets.

I’d negotiated a 2-year contract and signed the papers,  then suddenly remembered I’d forgotten to plan for another kid.

We believe in disco balls

Let there be (disco) light

Here’s the thing: I’d devoted a lot of time to studying the 2nd kid thing from every angle. But in the end, all it took was a disco ball and a marketing budget to make me forget about having a baby. That probably means something, right?

I’m not making any permanent decisions. I’m not saying never. In fact, in the end I can only say that one thing is true: I’ll probably never pray. I might not have another kid. But I can rent you one hell of a wedding venue.

Health Update: Developmental Preschool is just about the best thing that happened to us. We’re beginning to back off of so many therapy appointments because she’s having her needs met at school. It’s so good I feel like I should have to pay for it, but please don’t tell anyone that.

For the first time, I know absolutely for sure that Luella understands a specific word and tries to communicate it to us. She loves spinning in her wheelchair and just asking her if she wants to spin results in squeals. I’ve finally realized that she does a Stevie Wonder-esque head movement and kicks her legs when she wants to spin, which is the first thing she’s been able to clearly request. Needless to say I am happy to (endlessly) oblige.

7 Tips for Winning an Insurance Dispute, Making it Marginally Less Horrible, I Guess

If my life could be summed up in two words since moving to our condo, they would be: walking and talking.

Our car has been all but abandoned. I drive Luella to her doctor’s appointments on Tuesdays, stop for errands on the way home, and park it in the garage (I’m only scraping the passenger door against the cement beam by our spot about 10% of the time now, so GO ME), where it gathers dust until the next week.

Instead, we’re walking everywhere, favoring the flat streets, since Luella’s new wheelchair is HEAVY and I’m paranoid of accidentally letting go and it rolling down the hill. That fear remains, despite a sweet REI guy rigging up a wheelchair safety strap while I bombarded him with internet stories of getaway wheelchairs like it was the most normal thing he’d done all week.

Wheelchair

the new ride

While we walk, I talk. More accurately, I wait to talk, my phone perched atop the wheelchair, a god-awful recording repeating through the speaker:

“Your call is very important to us. One of our representatives will be with you shortly.”

As anyone knows who has made the grievous error of asking about Luella’s health care, (sorry everyone at the party who wasn’t able to slink out in time), we’ve spent 10 draining and infuriating months calling our insurance company to deal with a billing error.

Here’s the short version: the insurance company said they would pay for a maximum of 60 occupational/physical/feeding therapy visits in 2015. We counted that we used 47, but began receiving bills saying she’d exceeded her maximum by 12 visits. Uh, no.  And at $300+ per visit–which by the way, WTF–it was a huge issue.

Frowns-Edited

don’t even try

With dread, we called our insurance company nearly every week for almost a year, only to result in pointless discussions with customer service representatives who would read from the same booklet sitting in my lap.

But three weeks ago, I finally got the “smoking gun” when the insurance company sent their complete list of Luella’s visit dates. Lo and behold, THEIR OWN RECORDS showed she hadn’t reach the maximum visit count and we shouldn’t have been billed at all.

I RAGED. Within an hour, I’d sent a forceful letter to our insurance company’s Board of Directors and issued a formal complaint with the Washington State Office of the Insurance Commissioner. I heard back almost immediately from both, who said they would look into it. Last Wednesday, the answer came from our insurance company:

Errpr

That’s fancy insurance talk for “you’re right, we’re wrong.” We WON. And all it took was two letters, about 50 phone calls, and at least twice as many bottles of wine.

Since I consider winning this case my lifetime achievement (I’m not really joking), here are 7 tips  for people who are stuck in the health insurance vortex of evil:

  1. Keep your own damn records. You’d think that your records would match those of your provider and insurance company, but HAHA GUESS WHAT, you’d be wrong. Document everything.

    Cat on box

    finding enjoyment in 2.5 years of medical files

  2. Check your address. That, or never move.  Our address was mistyped in multiple places which meant we didn’t receive bills (that we shouldn’t have had in the first place) that were sent on to collections. It took three tries before it was corrected.  Just ask for the address on file every time you call, for all of eternity.

  3. Organize your information. We kept a file of Luella’s relevant insurance documents that we could refer to during calls. We used Google Docs and took photos of key papers so we could easily view them. And on that note…

  4. Take screenshots. Our insurance company tried to deny some visits that had been approved, until I mentioned that I had a screenshot. After putting me on hold for 10 minutes, the customer service representative returned to sheepishly admit, “We made a clerical error and gave you too many visits. But since it was our mistake, we’ll honor those extra visits.” Click. Click. CLICK.
  5. Demand a point person. A few times, we escalated beyond the base-level customer service representatives to a moderately helpful manager, who would tell us they are “definitely looking into it!”. And then…nothing.  Ever. I’m certain there is an island somewhere of kind, industrious customer service representatives that insurance companies have deemed bad for their bottom line. Demand one person, refuse to talk to anyone else.

    Smiles

    my point person

  6. Practice. Conversations about complex health insurance issues are really difficult over the phone. Rehearse ahead of time so that you can be concise on your call. It’s also a great opportunity to practice bleeping out the swear words.
  7. Make some noise. When all else fails, file formal complaints. Reach out to the Board, your insurance commissioner–ours has a very clear and responsive online process, by the way–or any other institution that will get their attention. State your demands clearly but without maliciousness, limiting your accusations of corruption to just once or twice (ahem).

The situation seems to be over now and I can move on, refocusing my efforts on sending complaints to other entities (oh hi, Public Works). I’ll go back to walking without a smarmy robot in my headphones endlessly thanking me for being on hold, as though I’d stayed on the line out of the goodness of my heart.

Painting

a more preferred mess

And when we fight our next battle–I’m no Pollyanna–we’ll be more experienced.  Although we switched insurance, I know we’ll be here again some day because this is the reality of caring for someone who needs a lot of care.

But for now? I’m counting it as a gold medal win.

Health/Life Update: Luella will be starting preschool in a few weeks! She’ll be attending developmental preschool through the Bellingham School District and we are EXCITED.  So far we’ve been impressed with the transition process and really like her teacher and the specialists.  Obviously it’ll be sad to have her away from me and blah blah all that, but I’m looking forward to her growing through this program.

We’re beginning to work with her on alternative communication through symbols.  We’ve made cards with symbols for songs, activities, feelings, etc.  and are trying to teach her what they mean (ex.: I show her a symbol of a bus and then sing “Wheels on the Bus). Eventually she may be able to communicate what she wants and how she feels by looking at the appropriate symbol. We’ll see!

Luella’s brief, 2- to 10-second seizures continue and while she has regular monitoring from her neurologist, they don’t seem to be causing any damage or pain at all. However, they look a little more gnarly in part because SHE is getting bigger.  If you bump into us and one of those happens, now you know what’s going on.  If I’m not freaking out, neither should you. 🙂

Couch Smiling

Trophy Life

The day before we turned our house keys over to the new owners, Mike discovered a place we’d completely missed packing: the trophy case.

We’d somewhat ironically filled it with our childhood awards, my Math Olympiad certificates and felt junior high “letters” for marching band sitting alongside Mike’s Eagle Scout photo. It was a prideful shrine to our combined childhood dorkiness and over the years we’d added to the collection with sports medals (ahem, “participation trophies”) and various certificates.

 

Orange shirt-Final

the big prize

 

As a sucker for pageantry, I’ve always loved everything about awards. And so, at the end of each school year from 7th to 9th grade, I eagerly awaited the lucky winners to be announced for life’s most enduring honor: the yearbook Hall of Fame.

In 9th grade, I thought I’d reached the pinnacle of junior high success when I was told that my classmates had voted me for an award.

I excitedly wondered which category I’d won. Happiest? Friendliest? Best dressed? In what would be a most bittersweet moment, it was announced:

Most Unique.

 

Most Unique-Final

 

It shouldn’t have been a complete surprise: I was a little weird when I was 13.  I’d recently  realized, “You know what’s hard? Trying to fit in!”. So instead I went the other direction, wearing shirts covered in graffiti print, skirts with colorful tights, and pairing it all with combat boots, like an acid trip Daria.

As an all-knowing adult, I can now reframe “Most Unique” to mean “Most Creative” or “Least Likely to Give a !@#$”, both enviable qualities.  But it was pretty clearly a “you dress weird” award, which just cannot be positively reframed in 9th grade.

By the time I arrived at high school the next year, I’d chucked my knee-high Doc Martens, grown out my hair, and made a moderately successful attempt at fitting in with a scaled-down style.

 

Socks

apple –> tree

 

Here’s what I learned: it’s WAY harder to “act normal”.  ‘Normal’ has a built-in comparison, to which you will almost always lose.  It comes with an assumption about how things are SUPPOSED to be.  

Despite my attempts at not comparing, I’ve spent 2.5 years feeling like nothing we do is normal. Luella’s development is slooooow and so the gap is ever widening between her and other kids.  Her differentness has at times felt isolating, overwhelming, and just HARD.

But rather suddenly, our life feels…well, a lot less unique.

It’s not that we’re “acting normal” (I mean, clearly), it’s just that I can no longer envision–or want to envision–things being different from how they are right now. It’s so normal, sometimes I even think it’s BORING, a delightful thought that would have been inconceivable even a year ago.

And that’s all making it much, much easier.

 

Blue sweater in bed

and the living is easy

 

There are probably a few contributors: the passage of time, stable health, and a growing group of friends whose kids have disabilities.

But I suspect that our move to downtown Bellingham has been the most influential factor.  While it’s not exactly an urban capital (we still have to plug our meters with spare change, LIKE ANIMALS) people with disabilities are a much more visible part of this community.  Luella is not out of place here, she’s readily reflected in the people we live among.

 

Gait Trainer

gait training

 

It’s been the rare day that we haven’t seen or talked to someone in a wheelchair, a notable fact as we wait for Luella’s first wheelchair to arrive. While I don’t know what Luella understands–or will understand–I do know that surrounding her with a community where she better fits in benefits ALL of us.

 

Champagne

a not-normal downtown weekday lunch

 

In the end, we packed the contents of our trophy case and set out just a few awards at our new place, none of which are from the yearbook Hall of Fame.

I might have been Most Unique twenty(ish) years ago, but it’s pretty obvious that Luella has succeeded me in that category. After all, she’s clearly different and courageous: a style icon in her own right, she’s been boldly sporting a wildly colorful knit sweater with aqua socks all week.  

Health Update: Cause and effect is still our primary developmental focus.  We’re building choice into her routine by showing her two things and giving her the one she looks at first.  This includes picking out her clothes, which has led to some truly unique fashion.  While she may not be making an intentional choice yet, the activity helps her to understand cause and effect, a VERY important building block for communication.  

We’ve submitted a request for Luella’s first wheelchair, which we’re VERY excited about.  Watch for Luella rolling in her sweet new red ride sometime in the next month or so.

In less pleasant news, she had her first dentist appointment and subsequently her first cavity filling.  Despite the fact that she hates things in her mouth, she was a champion.  

We’re in the process of doing all her eligibility assessments to begin developmental preschool  through the Bellingham School District in the Fall!   We’ve met with every school-based specialist imaginable and the whole process has been unpredictably stress-free. YES.

 

 

Short Change

When I was little, I had a red step stool that helped me reach the bathroom sink.  I remember tracing my foot on the engraved lettering: “Step up to be tall, sit down to be small.”

The step stool is now in my kitchen.  Not for sentimental reasons, but because I’m 4’11” and I can’t reach anything in my cabinets.

Honestly, I’ve never been bothered by my height. I can still fit into children’s shoes. Everyone lets me stand in front of them at shows. No one ever asks me to help them move.

I’ve never had a problem with it…until now.

Luella is getting BIG.

BIG kid

Luella’s last measurements put her at 2’10” and gaining on me at a rapid speed. Her legs hang to my knees when I hold her, making it look like a child carrying a child. And after a particularly ambitious walk with her in the carrier a few weeks ago, my back HURT. And hurt, and hurt, and hurt.

The longer I was in pain, the more I worried. If I can’t handle Luella NOW, how will I handle her when she’s 5 or 15 or 50 pounds heavier? When I can’t hold her in my arms, what will be left?

padden

Back-breaking walk

Finally, on Back Pain: Day 5, I stopped wallowing. I popped a Vicodin, realized that it was time to enact a plan, and started to take back some control:

  1. We asked our favorite brewery, Wander Brewing, if they would keep a folding chair on hand so that Luella can use her adaptive chair there (it doesn’t work with picnic benches, which is all they have). They happily obliged and now I can periodically set her down when my back needs a break. Please love on them for us and drink lots of beer there.
  1. I sent in Luella’s application for a disability parking pass. Getting Luella and her enormous stroller in and out of the car a million times a day is HARD WORK. Also, the only public parking garage in downtown Bellingham isn’t accessible without a parking pass (ahem, City of Bellingham).
  1. And finally, in a very rapid development…uh, we’re moving.

There has always been a looming question about how to make our house more accessible. Although she’s not in a wheelchair yet, the doorways are too narrow to move her stander between rooms. There are stairs to the front and back doors. The massive yard, which I’d thought a kid might enjoy, has gone terribly underutilized.

So we are selling our single-family home to move into a downtown Bellingham condo(!!).

We’ve hit the accessibility jackpot: we’re moving into a building (Morse Square, for you B’ham folk) with an elevator.  Into one of the few accessible units, with French doors on every room and an open floor plan. And a balcony big enough to fit a wheelchair.

stander

Even accessibility aside, this is the right choice for our family. I am not a yard-person. I don’t know, or really want to know, how to garden (gasp!). I’m ALLERGIC TO GRASS.

No, we’re downtown people. We want the museum, library, music, and farmer’s market just outside our front door. We want to live where as many barriers as possible are removed for Luella (and ourselves) to participate in the community.  And we’re prepared to sell half of our stuff to do it.

2016-01-15 20.15.03

Downtown kid

On February 17, we’ll start the move from our ‘hood to downtown. It’s a short distance, less than a mile, but it’s coming with some big lessons: Accept circumstance over expectation. Stop doing things that don’t make sense. Try not to hurt your back.

And if those lessons sometime come with a water view, so be it.

__________

Health Update: We are still working on cause and effect, which is an essential building block before being able to learn any type of communication.  She just recently demoed eye gaze software that allows her to make choices with her eyes since she hasn’t been able to make choices with her hands.  It is RIDICULOUSLY cool/futuristic and Luella was, in the tiniest but most exciting way, able to do it.  We’ll be demoing it one more time and then deciding if we want to begin the insurance process to have one at home.

Speaking of insurance, we finally ditched Group Health and signed up for Blue Cross/Blue Shield.  I have no opinion about them yet, but there is literally no way they could be worse than Group Health (grumble, grumble).

Luella will be starting developmental preschool in September!  We’ll see how often we want to send her, but she does seem to enjoy being around other kids  (kids tend to talk two inches from your face, which is great with Luella’s eyesight!).

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.

—-

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.

—-

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

Hair before and after