Working Out My Salvation #2: Christian-y Words and Competition

So now ya'll know from my previous post, the reason I "got saved". 

A friend even commented, "Thank goodness for that cute, little boy" which was so funny because I hadn't even thought about it from that perspective. I was just feeling guilty for the reason I had "become a Christian" which didn't seem very christian-y at all. But I guess it got the job done so thank goodness for that cute, little boy.

I took my new Christian membership as serious as a six year old could. In my spare time when I wasn't mooning over all the boys, I followed the rules, felt guilt when I didn't follow the rules, learned my Bible stories, and memorized my verses and catechisms. 

I was a good, little girl, thank you very much.

One thing my Southern Baptist Sunday school and Christian private school were exceptional at was teaching by way of making everything a competition. 

So even though I saw myself as an extremely shy, introvert, I was super competitive. I loved having the "right" answer on Sunday mornings, or being the first to find the Bible verse during "sword drills", or being the fastest to rattle off a memorized verse or the order of the Books of the Bible. 

Heck, I wanted to win, gosh darn it! (See what a good Christian I am? I didn't even write "Hell" or "G-d damn it!")

I always felt I had an edge, too, since I attended that Christian private school in between Sundays. Not all of those other little Christian sinners had that advantage - those poor depraved souls. I had daily little competitions to ready me for the big, real competitions on Sundays.

And funny thing, I didn't even care if I beat the boys. In fact, I wanted to beat the boys (which, looking back, may have done me a disservice in my quest to get the kind of attention I wanted from them.) 

Oh well. C'est la vie. I did love to win because winning came with attention. 

Notice me. Appreciate me. Love me.

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

Back to my trip through Texas from a few weeks ago. I know everyone is waiting with bated breath for it's continuation. Besides the trip through Texas has been responsible for dredging up all these old memories regarding my "salvation" and early "Christian walk". I had a lot of time to reminisce while in that van. 

(In case you are wondering, I am putting a lot of the christian-y words in "quotes" because if you did not grow up Southern Baptist or in the Bible belt, you may need to google them to understand the lingo. It was a secret society of sorts. I did not realize as a kid that not everyone understood our magic words.)

The whole reason we were even driving though Texas was because my dad had purchased a bunch of old antique radios from an online auction months back and shipping them would have been really expensive. He mentioned he was planning a road trip to go pick them up. 

So I said, well hey, if you are willing to go all the way to Mississippi to get that family sewing machine Aunt Barbara wants to hand down to me, then I'll go with you and help you drive. 

And then, wouldn't you know it, all of a sudden my brother decided he was coming with us "because God told him to". I didn't realize God could give you FOMO (fear of missing out) - ha ha, wink wink! 

Yep, it was looking to be a remake of one of our classic Scott family vacations, but without mom, obviously. (Don't worry, I made up for her not being there. But that's another story.)

We all flew together to New Orleans and then drove to Mississippi. After a couple of nights with my aunt and with a full schedule ahead including picking up a gazillion antique radios somewhere along the way, we left early for our return trip after a couple of nights in Mississippi. 

According to dad's itinerary, we'd be in the Dallas area overnight. I made plans to meet up with 3 different friends; my oldest friend from childhood, a junior high/high school friend, and a newer special needs mom friend I'd made within the last few years.

I took the first shift driving since I was the eldest sibling, had drunk a bunch of coffee, and called it first. (Dad had previously announced that since both my brother and I were there, he was not driving at all; we were totally fine with that.)

I pulled into the parking lot of Cracker Barrel for a late lunch and where we were meeting up with my first and longest friend from childhood. 

She was the same as always. She looked the same, she sounded the same. All the reasons I loved and adored her and still do came rushing back as we tentatively embraced (because Covid) with our heads turned to the side (because Covid). 

And then...I instantly reverted into a shy, introverted little girl; her long, lost shadow. Just grateful that she allowed me to be in her vivacious, bubbly presence; that she willingly called me a best friend. 

That is the exact opposite of how it was going to go in my head. I had planned on showing her that I had grown up and could be vivacious and bubbly, too! I anticipated us talking loudly over one another as we got caught up in person (we already keep in touch through FB). 

Instead I found myself sitting quietly while she (along with my brother and his stories) entertained us with story after story of her kids and beautiful life. She's an amazing story teller because she's able to take the mundane and turn it into a showpiece. We spent most of the lunch hour laughing even though after we left I wanted to cry with regret. 

After taking stock of myself (because I'm a grown up now and that's what grown ups do), I realized that my inner little girl, the one I had excused back then as shy and introverted and a shadow, that my inner little girl had wanted attention. She wanted to be the one in the center; in the light, not in the shadows. And she still wants it. 

I want it.

It makes me realize why now at almost 50, I'm so desperately trying to prove to people I can be funny, I can entertain, I can tell stories. 

Notice me. Appreciate me. Love me, too.

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

I recently finished reading "Writing Down The Bones" by Natalie Goldberg. She talks about recording "first thoughts" as a writing practice. It's basically a stream of consciousness way of writing; throwing thoughts down on the page without going back and editing as you write; getting what's in your head out of your head as fast as possible. 

I don't think she necessarily intends for "first thoughts" to be published. I think she means for the practice to be an idea generator for future more edited pieces; although she does describe occasional instances where what she writes in her "first thoughts" is too good not to share. 

I realized after reading her book that what I "publish" here on my blog is pretty much "first thoughts"; thoughts that probably need and should be edited to make cohesive sense. But y'all know now I'm way too impatient. I just love to hit that publish button as soon as I get most of the grammar and punctuation correct.

Because of this "throwing caution to the wind" and writing whatever comes into my head, I suppose it explains why my plan to describe my joy at meeting my friend for a brief lunch side-railed into a full blown therapy session. (And I'm assuming that as adults we all understand none of this is commentary about her, and all of this is about me and my perceptions about myself? Ok, good.)   

And I suppose there are also chances that a "first thoughts" blog post today may contradict another post tomorrow based on how my brain decides to view the world at any given moment. 

Well. So be it. Hopefully some editor comes along and pulls it all together in the end when I'm ready to finalize and publish my memoir. (Ha, ha. Just thought I'd keep putting that out in the universe in case that's how these things work.)

Working Out My Salvation #1: Let The Games Begin

I may have put too much pressure on myself by creating a cute writing space out here in my backyard. 

Nature provided the perfect weather, moderate temps and blue sky. 

I have moved the patio table to the end of the pool and erected a beach umbrella found in the garage to provide shade. 

The pool aerator provides a fountain's white noise. 

Wind chimes move periodically in the cool breeze.

Austin is quiet in the house. I can hear him on the baby monitor, mmm, mmm, mmm, as he talks to Dora.

The occasional clunk, clunk, clunk sound of scooters on the sidewalk next to my backyard wall as kids voices rise, then fall. 

The chatter of birds, a theme song in the background.

------------

Texas. I need to write about my trip through Texas. I WILL write about my trip through Texas. 

But where to start? There is so much in my head. The memories of childhood. Friends. Church. The Bible belt. Growing up Southern Baptist. My "salvation" story.

Well let's start there. 

I was six years old. And the honest truth that I have only recently admitted to myself and perhaps one other person is that I became "saved" because of a boy. A boy a year older than me sitting with his family in the chairs in front of my family. (No pews when your church meets in a gymnasium.)

As I said, I was only six years old, yet my heart fluttered in my chest for this boy (well, many boys, as you will see). He had dark hair, mischievous eyes, and a mocking smile. I felt a thrill and lucky if my parents unwittingly chose church seats near him. Especially behind him. I could watch him for the entire service and daydream of him noticing me someday. This is what shy, introverted girls do. I think. I hope. Perhaps just me.

I can't remember a time that I was not aware of boys, cute boys, mean boys, naughty boys. Didn't matter. I was aware even as early as Sunday preschool and kindergarten at the tiny Christian private school. 

I don't remember a time when I did not notice, like, or "have a crush" on boys. And I still remember names. (I doubt boys are reading this, but if you are wondering if you were one of those boys? Yes. You probably were.)

I knew I was what they called "boy crazy". I remember this custom where other kids and even adults would pinch the back of a girl's neck, and if she flinched by raising her shoulders, a natural reaction because it tickled, they would tease her and say "Ohhh, you're boy crazy!" 

My grandpa was relentless with this "game."

I hated this ritual. I hated that my body instinctively reacted to the tickle. I hated I had a tell. Now everyone would know. I remember trying to condition myself not to react if someone touched the back of my neck. I didn't want anyone to know this shameful secret.

That Sunday night during the "alter call", this boy sitting in front of me "walked the aisle" to "accept Jesus into his heart" (according to kid language) or "profess his faith" (according to adults), first to the preacher or deacon, and then in turn it was announced to the church. 

He was now "saved". 

What? I'm being left behind! My crush has been spiritually transformed. He's been "called". He has leveled up into a different club! 

As a six year old in a Southern Baptist church, I knew all the steps. I knew someday I would be expected to "walk the aisle" and "get saved", and now someone close to my age, and one of my adorations, was actually doing it. 

So I would do it too!

That night before bed, I told my parents I wanted to "ask Jesus into my heart." 

Of course, they were probably thrilled. It's a testament to good Southern Baptist parenting for your kid to do this at as early an age as possible. It means you have done your job right. You are a good Christian parent. You have indoctrinated your child! Congratulations. (This is a very simplified joke. Everything a six year old knows is basically “indoctrination”. Which is fine. We all have to start from somewhere.)

I, on the other hand, was just happy I was going to get to "walk the aisle" the next Sunday night. Get some attention. Happy to join the exclusive Jesus club with my boy crush.

-------------

Loud music from a neighbor's speakers abruptly interrupt my thoughts. 

My attention is drawn back to the present. I gaze at the honey bees flitting from purple sage flower to purple sage flower.

The music sounds instrumental at the moment. It's got a jazzy Latin or Spanish rhythm. I like it. I feel like I'm at an outdoor bistro somewhere fun and carefree.

I hear Austin beginning to fuss through the monitor...I go to check...he didn't hit his help button this time, but he did need help. His show was stuck and the play triangle needed to be touched to advance it to the next show. 

I remind him of his help button. We practice hitting it together a couple of times. Help! Help! He smiles.

Then I help him make a fist.

I accidentally figured out the other day when trying to help him use a finger to touch the triangular play button on the iPad screen that his fist worked, too. He had randomly made a quick fist and his brain caused him to spastically punch out at the screen near the triangle. The video began to play.

What joy! If he can control the iPad with a fist punch instead of a finger touch, so be it. It was a lovely discovery to find another option that might be easier for him. And me.

So I help him make a fist and support his elbow as I guide his fist towards the triangle button. Punch! The next video begins to play. 

You did it! I exclaim in my sing-song high-pitched, most encouraging voice. You did it all by yourself! (Well, sort of, I think to myself.)

--------------

I'm a signs person. I'm not necessarily looking for signs, but I try to pay attention to things that cross my path that I was not necessarily expecting to find. A book suggestion. An aunt calling out of the blue. Seeing repetitive numbers.  

I was knee deep in those thoughts about my 6 year old self when these distractions occurred. Did they interrupt me for a reason? Should I return to the story? Is this a sign I should stop sharing the story?

The night I was "saved" also happened to be my mom's birthday. She never let me forget we shared birthdays, her actual birthday and what they called my "spiritual birthday." I liked it and always thought it was a pretty cool coincidence. Killed two birds with one stone as they say. 

Perhaps, you're thinking, this is when I should log off and take all this to a therapist. Perhaps you are right. 

However, I shan't. I shall continue to "work out my salvation" (as a good friend described what she thinks I'm doing) right here in public. For now.

The music has lyrics now. I think it’s Spanish. I wonder if its a quinceanera or, maybe a wedding celebration.

I imagine myself walking down the street and crashing the party. I imagine getting Austin into his wheel chair and walking down the street and crashing the party. 

Yeah. I will stay put in my backyard. And drink a glass of wine maybe. I think this bistro needs to serve wine.

Late Night Confessional #1 - Magnetic Eyelashes

My kid is in bed, and I'd had too much coffee too late at night. So what else am I going to do? Obviously, make my first Late Night Confessional video. Sort of a review, sort of a tutorial, hopefully entertaining at minimum. :)

I look like I'm talking to someone off camera, but no, I'm just looking at the camera screen talking to myself. If you end up thinking this is entertaining and like, comment, and share it, maybe I'll make another one and actually look into the camera. LOL. 

We shall see. This may be a one off due to special circumstances.

Welcome To Your Adventure

Typically when you think of an “adventure” what comes to mind is an inspirational poster with a person hanging off a precarious cliff at golden hour with nothing but a colorful sky behind them.

Or maybe a mysterious winding road that curves and disappears between mountains into the sunset.

Oh, no. You know now you were wrong. 

An adventure is anything unexpected and appears possibly difficult that you consent to undertake anyway.

An adventure is when the suction machine is not close by and you risk wrapping your thumb in a clean towel to swipe inside your medically-complex son’s cheek hoping to absorb and remove the extra secretions that are causing him to gag and choke. 

An adventure is when that risk goes terribly wrong because you accidentally get your thumb between his teeth and he instinctively bites down like a pit bull who can’t release on command.

An adventure is you howling like a banshee until he lets go all the while imagining he completely severs your thumb and you will be scrambling to wrap it in a wet paper towel so maybe someone can reattach it; all the while  trying to figure out who you will call for emergency care for your son as well how you will get to the ER since you are the only one at home. 

Welcome to your adventure.

Photo by Sam Kolder from Pexels

Apology Trails and a New Career

I wake in the middle of the might, search for a tissue and begin quietly sniffling and blowing my nose. I'm not crying, I had fallen asleep crying and my stuffy nose caused me to wake. 

I gradually remember why my eyes are now warm and puffy, and rather glued shut. In my quest this year to read as many memoirs as possible, hoping to learn how to write my own, I'm currently reading a recently published book called Raising a Rare Girl by Heather Lanier. 

You see, she has a kid born with a rare genetic mutation, too. 

Years ago, I had found her blog when I was searching for parents with stories like mine that I could relate to. It was called "A Star In Her Eye", and I loved the way she shared her on-going experience of learning to see and promote her daughter's capabilities when everyone else just saw limitations.

I could identify since I was trying to do the same myself; trying to see past my son's broken "limited" body to see the divine being within, worthy of love and care. Through her words, I heard my own thoughts and therapeutic writing echoed back to me. I felt like she could be a friend. She would "get" what was in my head.

So I couldn't wait to read her book even though I knew it would be hard to read without feeling all the feels, my memories triggered by her accounts of her memories. 

And even though her daughter's syndrome differs from my son's in the details, so much of what we experience as mom's worrying about judgment and acceptance is the same.

*********

It's been almost 3 months since I wrote about Fat Bastard and how I'm trying NOT to be that Momma Bear stressed-out-special-needs-mom anymore (let it go....let it go...), but this life of restrictions during the Covid pandemic is really getting to me. We are coming upon 6 months since the schools and everything along with them originally shut down. At least in my part of the country.

I've been playing along because what else can you do? Plus, I don't want me or my family to get sick. So I've been wearing my mask. You know. Just in case. 

But I'm really over it.

Seriously. I think we figured out the rules of this thing a few months ago. If you are sick or old or compromised, stay home. And if masks and social distancing works, the let's get on with life. Why is anything still shut down? As an introvert, I don't even like to get within 6 feet of people anyway. So why should I ever need a mask? Plus don't we need to get a whiff here and there to build our immune systems against this thing? We just don't want to go around licking door knobs or anything. My dad always said a little dirt won't hurt us. I feel like he might be right.

But I don't know. These are ramblings coming from a brain that is overwhelmed with seeing destruction and mayhem on a daily basis from "peaceful protests". I mean, I barely even remember why they were protesting in the first place. I remember feeling empathy at first, but the original message seems to have been lost, buried, and put to rest at this point. 

All I see now is videos of people screaming horrible monologues of hate and vitriol directed at various groups they don't like or don't agree with and then destroying innocent people's property. And some people are getting hurt or dying in the midst of the chaos. 

It feels third world, and there is no one to blame except those that are participating in it. And also, it seems so weird (almost suspicious) why no one in authority seems to be doing anything about it either. You have to assume they either don't have the authorization or power to stop any of it or that they support it and don't want it to stop. It's just all so surreal. 

But enough about that, let's get back to me.

**********

As an empath, I can't help internalize it all, and well, I carry the heaviness which, unfortunately, keeps me on edge all the time and in a really bad mood. It's all so exhausting. And what I'm internalizing is starting to leak out on people in my path.

My husband has always been an innocent target of my bad moods, and has borne this burden with great patience. Sometimes he gets fed up enough and has to verbally put me in my place, but he also knows that venting helps me stay in this game of life. And, unfortunately for him, I feel safe enough in our relationship that I often take this privilege to unload on him for granted.

However, my internalized anxiety turned cup-runneth-over frustration over these last six months has put me on the verbal warpath when things are not going my way. I am on a constant walk of shame while dropping breadcrumbs of apologies everywhere I go. 

The pharmacist who doesn't get my son's seizure meds filled on time, "Well it will be on you if my son goes into cardiac arrest from seizures caused from going cold turkey off his meds!" I say in frustration over the phone. The clinic receptionist who answers they must be running behind when I go up to ask why our appointment is running 25 minutes late as we sit in an empty waiting room, "Seriously? NO ONE ELSE IS HERE!" I impatiently lament. 

During the appointment when the nurse says the lab tech isn't sure he can do my son's blood work after I answer he hasn't been fasting and had already stated that he had a seizure during the long wait before the appointment, "He's NEVER fasting! He's on a 24 hour continuous feed! And he has seizures all the time! If we cancel everything because he has a seizure, we'd never do anything! But if the tech is too incompetent to do labs, then I don't want him touching my kid anyway!" I seethe before I burst into tears.

Apology. And another apology. Apologies for everyone.

*********

I text "sure" when asked to play keyboard this Sunday even though I've been wavering whether or not to formally end my volunteer commitment to filling in on the worship team whenever they needed me. 

Within 24 hours, I text again to say I won't be able to play after all (as I experience all the grief feelings that I always go through when giving something up). 

Don't get me wrong. I LOVE singing with the worship team. And playing the keyboard is a close second to fulfilling some weird desire within me to perform music. 

But now I have this overwhelming urge (again) to step back from any outside activities that take up too much of my time and have too many deadlines. And performing music takes up a lot of my time the week prior because, while I love it, I don't want to be unprepared and let anyone down. So instead, I try to over-prepare in order to have the confidence to sing or play by that Sunday. 

And it's not the fault of those who ask me to do things. Remember I'm the one who keeps saying yes. I choose to say yes to this and other activities mostly because I'm a people-pleaser. But I also like to feel useful, and I want to appear to be, and feel like, a "normal" person (who just happens to have a time-consuming medically-complex kid on the side). 

Also, if I'm people-pleasing then I might get a little praise and affirmation in return. And we all know by now how much I love to be praised and affirmed. I've basically begged for it out loud in so many words.

But the reason I should step back is probably obvious. I really should be focusing the bulk of my time on taking care of Austin and making him a priority because when I have something else that I deem to be more fun or important - or just because I made a commitment to some random request, I usually just do the minimum tasks for Austin. 

And I want to give him more than just accomplishing minimum tasks. I want to give him experiences. I want to give us experiences.

I keep having to remember that I also made a commitment to Austin when I...I'm going to be blunt...didn't kill him before he was born like the doc encouraged. At that point I committed to a new adventure, albeit a chaotic, unknown, hard adventure, but one that I agreed to nonetheless. And there's really no going back once you say yes to an adventure like the one I said yes to. 

So, ideally, I would like to say goodbye to my idea of "normal" and yes to...well...abnormal, different, interesting, exciting, unknown. I've been wrestling too long with the guilt of putting other things before him.

But wait, my mind whispers, how will I get my affirmation? My proof of appearing useful? I suppose Austin thinks I'm useful when his bare necessity needs are met. He confirms this by not fussing anymore afterward. And I know my husband thinks I'm useful because he tells me (and because, seriously, who are we kidding? He still asks me which meds we give at night or in the morning). 

But what about the rest of the world? And why do I care if the world sees me as useful or talented or skilled? I mean, really it's exhausting to work so hard for outward approval. And to what end? A little dopamine hit that lasts briefly and leaves me immediately craving for more. 

I wish to quit looking for approval and affirmation from outside of myself. Is this even possible? I wish to learn to find praise and affirmation from within. I know my worth. And I know Austin's worth.

Because really, I'll only get this one chance, this one season with Austin. And God knows, there's plenty to keep me busy if I really want to do this. 

I think I want to do this. Actually, I really, really want to do this. 

So who will wish me luck with my "new career" choice?

*********

(If any of this last bit sounds familiar, apparently almost 3 years ago, I went through a similar process of giving something up around the time of another full moon. I guess it's becoming my thing. You can read that account here if you don't remember: My Morning of Mourning...)

On The Two Year Anniversary of My Mother's Passing

The anniversary of mom's passing is upon me. August 14, 2018. It doesn’t seem like it’s been two years since she’s been gone. Sometimes I forget and just feel like she’s home in her bed like she was almost continuously for her last two - three years. 

But most of the time I’m just so keenly aware of her presence; more than when she was alive. I think about her almost everyday now. 

Unfortunately, I am often also reminded as I become aware of my own behavior and reactions degrading into what feels good in the moment of the many attributes of her behavior and reactions that always bothered me and put me off the most . 

She is my constant mirror that I look in almost everyday. She is a part of me and in me in ways I can’t explain. 

**********

For the first few of weeks after returning home from Montana, I felt like I was just winging it through my days with little to no plan. 

But the unorganized chaos began to feel out of control at a time when the whole world seems to be getting out of control. I could feel the mood-spiral coming and going. 

I've begun making very detailed lists and schedules again. 

**********

When I get dressed up now, especially for church, I rummage through my mom's oversized costume jewelry box that I inherited. It's full of plastic and colorful baubles, as well as a few pieces of "real" jewelry, items dad gave her for birthdays, anniversaries, or Christmas gifts. Some of the real jewelry she probably picked out herself and some things he picked out for her. 

Her wedding ring. Her gold necklace with the little gold heart.

Week after week when she felt good, she shined. Not only because of her physical beauty, but also her sense of style which included an overt adornment with accessories. 

However, beginning as a teen in protest of not wanting to be like her and thinking her shallow in how much importance she put on these gaudy decorations along with her beauty, I convinced myself to believe less was more and thought myself superior to her because I felt I knew better how to edit my attire.

I've changed.

I now purposely wear long sparkly necklaces or colorful dangly earrings that I've dug out of the jewelry box. Big, in-your-face, costume jewelry has been something I’ve avoided since the 80s, but now I find myself decorating my outfits with it more and more. Not because I feel prettier with it on (in fact I feel very self-conscious), but because I want to remember her in her best light. 

I wear costume jewelry to pay homage to her memory. It reminds me of her happier days; therefore, our happier days.

**********

I’ve been struggling with the decision I made to take Austin out of his special needs school. Last week, I drove the 2 hours over and back to pick up his stander which we usually leave at the school year round since our travels in the summer preclude it’s use anyway. 

It was the last act of separation from a school he attended since he turned 3. My heart is both grieving the end and loss as well as being elated by the thought of something new and not having to deal with the very early mornings, long bus transport, and far away distance from home if an emergency comes up.

**********

My mother-in-law has this enviable relationship with her only daughter. They seem like best friends. They appear to have mutual respect and adoration for one another. 

It's beyond comprehension to me, yet I yearn now to have had that relationship with my mom. 

Adoration. Why didn't I adore her? She deserved respect and adoration. She was my mother, for God's sake! Maybe if I had adored her, she would still be here. 

But it was never meant to be. I wouldn't allow it. And now the missed opportunity hurts like hell.

My Summer of Memoirs and this Blog Post That Sort of Turned Into a Book Review

One of my goals this summer was to read a variety of memoirs to get an idea of different styles, structure, and basic formats since I’m trying to write my own. (Did I just say that out loud? Anyone want to be my agent and help me? LOL)

Anyway. Baby steps. So far this summer I’ve read:

An Abbreviated Life by Ariel Leve (Her style of writing was suggested to me to consider as possibly similar to my own. And if you've been reading my stuff this summer, you would see I've been trying out the style with a little more intention - and enjoyed it. I found I also liked her story because I could relate emotionally to it as it centered on her rocky relationship with her mom, albeit totally different circumstances.)

Faith Unraveled by Rachel Held Evans (I wanted to read a selection from her because she is popular in the Twitter ex-evangelical groups, and I was curious if her doubts and questions were similar to my doubts and questions. Of course they were - from 10-15 years ago - and maybe everyone has had these questions. So quite a bit was relatable. And, I did like that the style is easy for dumb-dumbs like me to read and understand someone else’s experience. I liked her dry humor.)

A Walk in the Woods by Bill Bryson (Someone on Twitter suggested this book as a funny memoir. It was a fun and informative account of hiking the Appalachian Trail for weeks on end. Gave me the feeling of being there so now I never need to do it. I loved the sarcasm and humor about the hard stuff. He speaks my language. The funny thing is the length of the book made me feel like I was ready for it to end which I think mirrored his own desire for some of the longer hikes to end. LOL)

The Yellow House by Sarah M. Broom (This was the hardest memoir to get through which means I have the most to say about it, I guess. For some reason her writing style left me lost in the story. I had no idea where it was going. Maybe that was the author’s intent. I felt like I needed to keep going back and forth in the book to remind myself who all the people she was referring to were. I was often confused, but plowed through more for “research” of memoirs than anything else. Her personal story of her family living through the disruption of Katrina from a perspective of a very poor and displaced family was definitely interesting, however the format or style was hard for me to “live” the story. I wanted too. I could feel she was therapeutically working through the pain of her past, looking for roots and connections. It's a sad story, and God knows I love a sad story. Maybe it covered too much ground for one book, an attempt to address too many hard aspects of her life instead of focusing on one. I know I’m tempted to talk too much about stuff no one wants to hear about, too. But I was ready for it to end at about halfway through. Side note: her mother seems to be the heroine of the story rather than herself.)

Everything Happens for a Reason by Kate Bowler (Just finished this book this morning. I chose it because of the annoying title, and I’m thinking now I may not need to finish my own memoir. She says all the things with the perfect mix of dark humor and sarcasm. I loved the shorter length because for me a memoir is basically an organized longer blog post or series of blog posts. It’s a glimpse into someone’s headspace for a while, but not too long. I love that she puts her personal struggle, doubts, and thoughts out there with a nice open ending so that anything can happen next. Because that is life. I love that even though her subject matter is cancer, anyone who considers they have a personal tragedy in their life can relate to all the feels, questions, and open ended unknown.

So this is what I've learned this summer: If my story doesn't make people laugh in the midst of crying then I will have failed. 

Goals. #amIright ?

On Prayer

For a couple years now, I’ve been loathe to use the words, “I’m praying for you” or “I’ll pray about that” or even “I’m praying for....” 

Y’all who read my stuff know whatever I once understood about prayer has changed for me so I haven't been sure if I should use those words. I’m still not sure how to describe exactly what prayer is yet. I’m still waiting and listening, if you will.

But because I don’t say the magic words “I’m praying”, I worry some may feel I’m ignoring concerns. Maybe a little hard-hearted. But I don't, and I'm not.

So I’m wondering if I should add those words back into my vocabulary, specifically for those of you who need to hear them. 

Because I do “pray”. 

I read or hear your story and from the depths of my inmost being without words, I yearn for the best for you. I yearn for your happiness and joy. I yearn for you to be healed and have your suffering eased. I yearn for you to have the peace of mind to endure all things.  

I yearn for these things for myself, too. 

And so in that light, “I’m praying for you.” 

“I’m praying for me.”

I’m praying.

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.