The Night The Lights Went Out and Anniversary Texts

I hear a loud thwump, and the house immediately stops humming. No AC blowing, no refrigerator dropping ice, no whir of the dishwasher. Of course, we all called out anyway "what was that?" and "is the power out?" 

It is confirmed that the power is indeed out when J, who has been playing Xbox, gets kicked off and let's us know with his exclamations of frustration that he is probably going to lose his game privileges for 24 hours to a week for quitting mid-game. 

As the wind rattles against the window wall that faces the churning lake, each family member gradually migrates to the living room. 

Some of us still have gadgets with a little battery left, so hubby gets on the power company's website. Yes, we didn't just blow a circuit, there is a local power outage. 

J immediately pulls out his phone and connects to the portable bluetooth speaker. However, after we sing along with The Thunder Rolls and are halfway through the second song on the playlist, the speaker dies from not having been charged for a few days. 

His phone is almost out of juice anyway, and M's is already dead. Only hubby and I have a little left on ours. The winds continue to swirl around our house

Seeing the speaking floor is wide open, M takes this chance to resume a discussion he'd started earlier with J about how people have lost their spiritual connection to the natural world due to technology and electronics, and that it all began with the industrial revolution. 

I'm vaguely listening since my laptop is still charged and has an internet connection through my partially-charged phone's hotspot.

I hear the conversation flow into his retelling of a synopsis of the The Odyssey's end. He tells it quite theatrically, and I find myself stopping to listen to find out what happens to Odysseus and Penelope. 

Apparently, after Odysseus has gone to war and spent 20 years trying to return through trials and tribulations, after killing all her suitors that were in her house as he arrives home, after Penelope tests him regarding the construction of their marriage bed, when they finally "reunite", they experience the closest one can come to spiritual nirvana on earth. 

I guess you aren't going to get that by sitting on a couch being entertained by electronics. 

I close my laptop.

*************

Eight years ago yesterday, hubs had a heart related "power outage". It was an quick, yet intense storm. You can read the just-the-facts version here: The Rain Came Down. 

***********

We discover we are not prepared for a power outage. We have no candles or flashlights in the house. We also remember that most of Austin's equipment runs on electricity although some of it runs on charged batteries. So the charged feeding pump and suction machine could work for a while, and if we need it, the charged portable oxygen concentrator, but I have no blender to puree his food so that it can be pumped through a feeding tube. 

By the light of an iPad, I have to figure out a way to blend it by hand. Specifically the avocado needs to be smashed up and smooth. I try using a gravy ladel in a large ceramic bowl as a sort of mortice and pestle, but I finally settle on putting it in a Ziploc bag and massaging and smoothing it with my hands. 

Once the avocado is pretty smooth, I add the thicker ingredients one by one, massaging and smoothing as I go. Finally I add the dry ingredients, and then the liquid fats and water. All in all, after about 30-45 minutes of working at it, I end up with a pretty smooth formula that resembles what I get from a blender.

In the meantime, the boys go to the only open grocery store and buy their last six emergency candles as well as three flashlights.

When they return, they proceed to read the mail by candlelight which evolves into pretending they are Civil War soldiers writing in their diaries or letters to their loved ones. 

"Dear Diary, the power just went out and we are making do entertaining ourselves by candlelight," jokes one kid using a southern accent. 

"Dear Eliza, it has been 16 minutes since the power went out, and we have run out of entertainment options," jokes another.

"Dear Diary, it’s been 45 minutes since the power went off, and I’ve made seven entries into my diary," pens the first. And on and on.

It is all too funny, plus it helps that M is currently sporting a Civil War general's beard and mustache. I'm laughing so hard, I almost pee my pants and have to stand cross-legged while mooshing avocado and baby beef. 

***********

After we get Austin in bed around 11:00-11:30pm, no one seems ready to retire because we are all hyped up over our novel situation. We end up sitting around, what the boys call, our "feasting table" lit by candlelight. 

Somehow J ends up leading us in a rousing discussion of two of his favorite books, Beowulf and a follow up book written years later about the antagonist, Grendel. 

He tells the stories with as much animation and excitement as M told The Odyssey. They discuss and argue heroes and antiheroes, philosophy and religion. 

I have to say we really immersed ourselves into the idea of no technology and seeking the spiritual through the natural. It was also remarkably eye opening that we could actually entertain ourselves just by discussing things we've read and learned.

***********

I'm sticky from having worked in the yard all day so I'm lying in bed awake. I didn't get to take a shower before bed because, oh yeah, there is no water when there's no electricity. We are on a well and the water relies on a pump to get to all of our faucets. All night we had been using bottled water and not flushing toilets. Therefore no shower, either.

Finally, at 3 AM, the power comes back on. I know because I am obviously wide awake waiting for it. I take a shower.

The next morning the lake is calm as glass. However, I notice one of my chairs has blown towards the edge of the dock. After looking more closely, I sadly realize I am missing the footstool.

I traipse down to the dock edge with a golf club thinking I'll just fish the stool off the bottom of the lake. 

Unfortunately it's not there and after more investigation and experimenting, I find out the stupid thing floats! Which would have been great if I had been standing right there when it fell in, not so great since it fell in during a windy, high-wave storm in the middle of the night. 

Because I am ridiculously determined to retrieve my stool today, I get on a paddle board and paddle for an hour and a half up and down the shoreline. I also venture out pretty far into the bay when I see things floating to see if it's my beloved footstool. 

Nope. Just another waterlogged branch or log. Again.

**************

Yesterday, I received a text from the hubs reminding us of his anniversary:

"8 years ago today at about 4:30 in the morning, I survived a heart attack. I love you guys. Days like today make you thankful for the important things in life - you all are important to me.  So glad we are all together."

Me too, hun, me too. 

 

Fat Bastard and a Quest for Peace

She attacks our glass windows repeatedly 3-4 times throughout the day. She sits on the deck railing for a minute, and then flies at each window with a tap or bump. Over and over and over, again. 

She's done this every single day since we arrived for the summer, but there is evidence (bird poop and window markings) that she may have been doing it ever since Spring began.

We call her Fat Bastard because she's...umm...fat, and...annoying. 

(Plus my people and I think Austin Powers movies are funny.)

**********

They call themselves "Momma Bears", moms who feel a primal urge to go to drastic lengths to advocate for their kids. They take pride in the way they can scratch, bite, claw and growl their way to get what they deem their kid needs and deserves. 

And special needs moms might be the biggest, baddest Momma Bears out there. They have a super power to be able to summon every ounce of energy from the god of special needs children in order to rain down hellfire and brimstone upon the unsuspecting insurance customer service agent or the slow night nurse on the 8th floor at the children's hospital.

Later if they win the scrap, they can brag and strut their special needs mom prowess. And if they are unfortunate enough to lose the battle, they can at least mourn and lament how hard they fought to try to get that certain thing that was going to be the be all and end all next step thing to fix their kid. 

Either way, the praise or sympathy from other special needs moms can be worth the fight even if the goal won't do much to fix or improve their kid anyway. Those dope hits of support and affirmation are strong and addictive.

I should know. I used to try to be that kind of mom for Austin. 

Until I decided I couldn't and maybe didn't need to.

**********

When we first arrived, I was sure Fat Bastard was needing to drop some eggs soon because she was so...umm...again...fat.

But I haven't been able to figure out exactly where her nest is located. She's either super good at being sneaky or she's brain challenged from banging on the windows and forgot where her nest is.

I've found a huge nest on the side of the house that I thought might be hers, but I haven't seen any activity there. It looks abandoned although I know its new since Christmas because I went around removing all the nests on the house at that time. If this is hers, then it's going to make me super sad that she can't find it. So I'm not going to think about that.

There's another nest where I've seen a smaller robin attending babies in a shrub outside a basement window, but I have not specifically seen Fat Bastard fly into it. 

She does fly away into some of the tall shrubs closer to the lake when I tap on the glass after she's attacked it so I'm hoping she may be located there. Although that may be too obvious.

So why her obsession with our house? I can't figure that out. Maybe she's just attacking her reflection, fending off "another bird". 

She's relentless, but she probably thinks "the other bird" is relentless too.

************

The primal urge to advocate for, defend and protect a special needs kid does not come without a cost to the special needs mom. And unfortunately this cost is usually in the form of emotional and physical health as well as the potential breakdown or loss of important relationships.

For me the primal urge came from a sense of guilt, that my kid was special needs because of something I was responsible for whether environmentally or genetically. I chose to carry him and bring him into this world in an "imperfect" state. Therefore it fell on my shoulders to make sure he had every chance possible to get normal.

It was exhausting physically, draining emotionally, and creating rifts in my family relationships. I was always on edge, always looking for the next best therapy or cure. Always stressed about how to find it, travel to it, or pay for it. Always feeling guilty if something didn't work out. I was relentless.

I remember one day I threw the phone down on the floor in a crying, screaming rage after a medical supplier told me they couldn't provide the feeding pump I needed. I had already been ping-ponging between other suppliers because of our specific insurance mix. A supplier would take one but not the other, etc, etc.

That was one of my breaking points as I stood back in my minds eye watching myself cry and scream over a feeding pump. I knew then I couldn't continue living this self-imposed role of being a Momma Bear. 

************

Lately, she usually has a cricket or bug in her mouth and I think she's getting thinner so she's obviously not looking to deposit eggs anymore. She's just not wanting "that other bird" she sees in the reflection to see where her nest is.

Robins are fun to watch when feeding babies because they are very cautious and aware. 

You stay as still as you can, but they still see you. 

They will sit on a rock or limb (or deck railing) with a mouth full of bugs and take in their surroundings. When they are sure no one is watching or when they come to trust you, they will swoop into the nest and jamb their babies' mouths full of smooshed insects. 

Probably once her babies fly away, she will stop attacking our house, and she will be at peace.

**********

In my special needs mom forums, I watch and read as other "fat bastards", I mean, Momma Bears still fight and scrape, cry and scream over trying to get what they want. I feel their pain, their struggle, their desires. It's still somewhere deep inside me, that tiny hope that I might stumble across that perfect cure someday for this or that. 

But I don't let myself actively fight for most things anymore. If I have to make those hard phone calls or requests I try to stay calm and have a "what will be, will be" attitude. Doesn't always work and sometimes I forget, but I try. And I'm getting better at it with practice.

If I get a nurse scheduled? Great. If not? So be it.

If I get that piece of equipment? Great. If not? So be it.

If I find (and have the energy to try) a new therapy? Great. If not? So be it.

If I can get his seizures to finally stop? Great. If not? So be it.

And yes, I'm one of those special needs moms (are there very many of us?) who is ok just trying to keep my kid happy and content all day. I found it's the best way for us to survive these circumstances together. 

You see, this "fat bastard" had to finally let guilt and expectations fly away to be at peace. And if I can do it, others can get to that point too.

Tiny Dancers and Baby Cows

We are caravanning north. I'm leading in Austin's wheelchair van, and husband is following us in his truck. 

We decided he'd drive behind me like when we used to ski as a family with little kids. 

He'd come down the mountain last, scooping out of the snow any kids along the way who had falls, crashes or garage sales (when your equipment goes flying in all directions due to said fall or crash).

This is my first time to drive the entire 19 hour trip. I get to lead. I get to set the pace. I have to pay attention. And husband is ready to scoop me off the side of the road, you know, just in case.

Four hours in, I am feeling like I'm on top of the world and can drive forever. 

Six hours in, I'm pretty sure I'm going to die. I'm so exhausted, and my back hurts from a tweaked muscle I got from lifting Austin incorrectly that morning. 

I hear Austin's breathing change, alerting me that he's having a seizure. I tell him he's going to be ok.

I call husband and say we are stopping ASAP. He says, "Take the next exit."

I pull into a parking spot, get out and open the hatch, and lie down on the ramped floor in the back of the conversion van. The floor has been lowered to accommodate loading the wheelchair so it rides inches above the asphalt highway so its pretty hot. It feels amazing on my back. 

Husband gets me a 5-hour energy and two Advil and then patiently-not-so-patiently waits for my cue to get back on the road.

After feeling like I can't postpone any longer, knowing we only have a couple more hours to go. I reluctantly get back into the driver's seat. 

I turn on Spotify to a dueling pianos playlist I'd found a couple days before - eight hours of a little bit of everything. And I blast it.

*************

We are leaving Nevada and entering Arizona. There's an in-your-face digital highway sign warning of Arizona's 8:00 pm curfew. Holy shidoobies. With the anticipation of our trip, I had completely dismissed the curfew, figuring we'd be out of Arizona way before 8:00 pm. 

Panic quickly flows through rule-follower me as I'd forgotten about this 30 mile diagonal short-cut that I-15 takes across the NW corner of Arizona before entering Utah. 

Fortunately, I realize it's only about 7:00 pm. 

And even if it wasn't, am I really going to get pulled over on a portion of interstate that has maybe 4 exits into remote Arizona? Are they really expecting anyone to get out and riot in Beaver Dam or Littlefield? 

Maybe not. But I'd rather not chance it. (Remember, I'm the one a wasp will fly over hundreds of people's heads in a gymnasium just to land on me.)

After my panic begins to dissipate, I feel anger. Anger that the whole state gets punished like a class of kindergartners who lose recess because of one kid's stupid, disruptive actions. 

Anger that the curfew doesn't just affect the rioters, but the peaceful protesters, the businesses, and the residents just trying to go about their lives to survive, too. 

Anger that it seems more and more likely that the rioting is probably from non-residents who are intent on hijacking the protests for their own agenda.

At least that's what it seems like to me. But who am I and what do I know? There are too many opinions and perspectives to even hope to see a glimpse of the truth. Facts will always be spun. 

So I drive on...knowing changes need to be made and probably will be made eventually. Hopefully those changes are for everyone's best.

So I drive on...into the thrill and adventure of life's chaos.

***************

Adbar / CC BY-SA

(https://creativecommons.org/licenses/by-sa/3.0)

It's mid-golden hour as we enter the Virgin River Gorge with its bright orange limestone walls in contrast to deeply shadowed crevices. 

I'm on sensory overload, attacking curve after curve, squeezing past steep rock walls, and trying not to glance over cliffs into valleys as the highway winds through the canyon. 

And there's the added challenge of road construction along the entire length. Concrete barriers, orange cones, and narrowed lanes. 

Ice Ice Baby is playing from the playlist, the Advil and caffeine are kicking in. I'm dancing on my butt cheeks with some fun neck action thrown in. 

I can do this!

I see the lowered speed limit, but the traffic doesn't seem to be slowing. I'm quite woke now and feeling pretty good, so it's ok. I'm social distancing the car in front of me without holding up traffic. I'm also catching "very quick" glimpses of the canyon's beauty. 

I feel alive.

Elton John is serenading me with Tiny Dancer, and I'm in the driving groove. It's just me and Austin, the road and my imagination. As I feel the pull of a tight curve rounding past one of the steep drop-offs, I imagine the feeling of us careening off the cliff like Thelma and Louise.

Hold me closer, tiny dancer

Count the headlights on the highway

Lay me down in sheets of linen

You had a busy day today

 **************

I catch my breath and a big grin spreads across my face as we pass a school off to the right of the highway. There are groups and groups of kids with brightly colored jerseys, huddled together making plans before they hear the whistle. Parents line the sidelines for what appears to be some kind of sports tournament.

No signs of a government imposed curfew and no social distancing. Only signs of normalcy after we've had it ripped away from us for months. Just a regular summer's Thursday evening tournament. No "new normal", just regular normal!

I am so freaking elated, I want to cry.

I call husband to gush to him about what we just witnessed. "Did you see that?!" "I was about to call and say the same!" "Can you believe it?" "I can't believe it!" "What state is this?" "It's Utah!"

Utah, America.

I drink in the purple layers of mountains created by the setting sun surrounding me on all sides. Slivers of snow cascade down peaks in the very far distance.

I glance back at Austin. His eyes are red, and there's a tear seeping from one corner down his cheek. 

Utah, America, I sigh.

I think he's sleeping. Sometimes he sleeps with his eyes slightly open and they get dry. The tears could be a natural response to dry eyes. Or the setting sun is shining in them causing them to water. Or....

I feel ya Austin. I feel ya.

Oh, and baby cows in the spring, y'all.

Date Nights and Dopamine Hits

We are sitting on opposite ends of the couch finishing up a couple of episodes of "our show". It's a nightly date. Together, we like to escape from real life news of murder, protests, riots, and pandemics and immerse ourselves in a Netflix or Prime series that...depicts fake murder, protests, riots, and pandemics.

Yes. There's irony.

After the last episode ends, I gather up my stuff while husband finishes shutting down the house. I walk into our bedroom, and in dismay, realize that I am two hours late turning on Austin's feeding pump. The overhead light is still on, and he is still hooked up to a now empty water bolus bag.

My mood flips and I feel the weight of the fail which I try to defer to husband as soon as he walks into the room. "Why do I have to be the one to remember? Why didn't you remind me? Why do I have to always be the one to keep him on my radar?"

None of these questions are really directed at him. He actually "keeps him on his radar" way more than I do. The questions are mostly a lament at my own selfish desire to get immersed in something without having to think of someone else and the ensuing guilt when I do.

************

I wrote a blog post called Rabbit Holes and Carnival Rides the other day. I am really only trying to process all that I am reading on Twitter, to somehow sort through it in my mind and come out with some kind of resolution so I can move on (hence the rabbit hole reference - I just want to have a chance to let my brain run amuck and consider all the sides and angles).

And weirdly, I had almost no emotion when I wrote it. I was merely recording observations about what I was reading in contrast to what I was experiencing with Austin. And sometimes I'm so numb to Austin's stuff, I can go through the motions bereft of the E.

I really thought it was a big fail of a blog post since I didn't feel a huge emotional response while relaying my thoughts. Most of my writing that has garnered the biggest responses where born out of grief spilling out in the midst of tears and anger. The words were a verbal form of rioting. And people liked it.

But after getting my thoughts down, I read what I had written, and thought, huh, maybe that's ok. Maybe it's good. I saw some interesting parallels between what was going on in the world, and what I was experiencing right in front of my eyes. I felt latent emotion while reading it even though I did not experience any specific feelings while writing.

I was curious to see if other's would like it or hate it.

*********

Later in bed he says, "I read what you wrote, and I'm worried...".

My body responds with a sinking feeling in my stomach, and I feel sick. I've written so much in the past when people SHOULD have been worried. Yesterday's is the last post I thought would cause concern.

He says, "I'm worried about rabbit holes."

And this is why I love him. He knows me in and out, and he knows I have a master's degree at getting lost in thoughts and potentially spiraling into a funk. He tries to help me prevent that. That's a good thing.

Fortunately though, I assure him, that post was not referring to those kind of rabbit holes, but only the desire to follow a thought trail to its end without interruption.

Although, I confess, the reason I couldn't follow a thought trail is because of Austin, and the radar, and this going on 10 years - referring to the ritual of morning and evening of Austin's care. I complain, "I'm so tired of doing the exact same thing every morning and every night."

He quietly comments, "Well, I get up and go to work everyday. I do the same thing EVERY. DAY."

"Oh yeah, " I say. I guess that's just what people do.

**********

The "I'm worried" thing is why I share, delete, and reshare when posting on my personal Facebook timeline. I never know whom I might be causing concern, or how my words might be taken. I'm a people pleaser, and I don't want to disappoint anyone or make them worry.

So I write. And usually I also post on my Facebook blog page and Twitter feed.

But I post tentatively to friends and family because I certainly don't want to burst anyone's bubble. I wouldn't want anyone to find out that I'm actually NOT a Super Mom heroically taking care of a Medically Complex Kid all the while finding a way to co-parent Two Awesome Adult Boys while simultaneously executing the role of being an excellent Supportive Wife, organized Home Manager, and all around Good Christian Girl saying yes to everything church. I mean, I've worked pretty hard to give that impression on my personal timeline. I'd hate to screw up that perception.

So I could avoid all that. I could just post on my blog and be done and not advertise anywhere that I wrote anything. No one actually follows it and it's rarely found by accident. I would be speaking into the ether, and it would serve its therapeutic purpose.

However, besides the therapy of unloading what's in my head, I secretly, ok - not so secretly, hope I get a response. I hope that people will read what I write, and be like, "I'm so glad she wrote this, because it's close to what I was thinking," or "There goes Rachel again, trying to sort out her head in public...she's so funny when she does that...but maybe she has a good point there," or "I can't identify at all with this girl...she's a freakin' insane idiot, but I sure love her honesty and the way she writes...she's a good Trying Trier Who Tries."

Whatever. Something. Anything.

*************

So I published it.

First I shared it quietly on my official Facebook blog timeline (Rachel HagEstad Blog) and on Twitter. But neither of those spaces have a very large reach or exposure, and I rarely get responses.

I got exactly three.

And I want responses. Actually, I NEED responses. I need the dopamine hit of getting a response. The best hit is an encouraging comment with, at minimum, people clicking a positive response button.

So like I said, I shared it on my personal timeline, deleted it (because this is going to be friends and family potentially reading it, and do I really want that?), and then reshared it hoping at least someone relates to it and the risk doesn't go south. It's like I'm fishing, and I'm worried I might actually catch something because then I'll have to eat it or throw it back.

Whew, it goes over ok. I got my small dopamine hit, enough to get me through another few days or weeks.

********

He walks across the kitchen to kiss and hug me goodbye after his morning ritual of prepping for work, listening to a podcast, eating, showering, and making me coffee. He's been up since 5:30 am? How would I know. I just got up 5 minutes ago.

Mid hug I say, "Thanks for going to work every day so I can stay home and complain."

He smiles and leaves. 

I sit down to consider what I can complain, I mean, write about before Austin needs me.

The addiction is real.