Everything

 So funny story. And I know y'all aren't expecting me to say this, but...during this whole saga with Austin (and I know...it's not over yet), 

I DON'T THINK I'VE SPIRALED EMOTIONALLY.

I mean, I've shed tears here and there. But it's mostly been in relief of getting help or being heard. 

Like my voice cracked on the phone with the gal on the 911 call, but once EMT arrived, I felt like I could let go and everything was now out of my hands. 

And I shed a few tears last week reviewing all the events that ended with us here in PICU, wondering if I could have done anything differently, but I realized, based on what knowledge I had, I did everything I could - I tried everything in my power and did not give up until I had to. And when I did give up, we got here in time.

Or like the other day when the doc offered a potential solution to that very hard thing we deal with on a daily basis. Will it work? Who knows. But being heard was tear-worthy. 

But other than what I feel are justified tears, I have not gone down my normal dark mental path of "why me" or "will this ever end". 

I've been able to focus on keeping my vibration levels high, finding joy, looking around to see what's worthy of gratitude.

For example:

While Austin was vented, the overhead lights had to stay on all night. Normally this would be a source of annoyance, but I remembered my face mask can double as an eye mask. 

Eye masks are everything.

Also while Austin was vented, his door had to stay fully open for easy access. In the wee a.m. hours, a nurse got silly and laughter of co-workers got loud. I felt that urge to get become indignant and "don't they know we are exhausted and trying to sleep?" But all of a sudden it dawned on me that laughter vibrates at a high frequency, and Austin and I can benefit from that. So I let myself feel their joy. 

Laughter is everything.

We have a chair and a recliner in the room. The recliner folds out "flat" to serve as a bed (flat like your grandmother's old sleeper sofa with a 2" mattress). It took a few nights to adapt, but I've now accumulated enough pillows to smooth out most of the divets. 

Pillows are everything.

And I could go on...

Cleaning staff is everything.

Nurses are everything.

Quilts are everything.

Austin smiles are everything.

See? I don't know how to explain it, but it is so nice to not feel sad or angry. This is all so new. I hope it lasts.

P.S. A doctor on rounds found and gave me a real eye mask the night I had a migraine. So there's that too. 😊

Doctors and Sparrows

I wake to my 7:00 am alarm. I notoriously miss morning doctor visits and rounds by sleeping through them. Why do they have to come by so early? These early birds; these eager beavers. 

I sit cross legged on my recliner-bed, propped against plastic sterile pillows hospitals like to use, and wrapped in one of those hospital blankets that seem like they are going to be too light weight, yet always provide just enough warmth, sometimes too much. 

I go over the last few days in my mind; and then narrow in on the last 24 hours. Stubborn pride to fix him on my own, the determination that “I got this” along with my internal recent commitment not to spiral kept me going and trying things probably longer than I should have. 

As I reflect now, with the adrenaline of yesterday having worn off, I realize how sick I let Austin get before I threw in the towel and called for help: the amount of infection in his little tummy; his shunt catheter that leads straight out of his brain, the end floating in a pool of puss; the strenuous act of vomiting dark green bile every time I tried to give him just a few drips of water; the fact that he can’t tell me where it hurts or tell me “mom, that’s not helping”. 

So just when I am finally allowing myself to have a quiet little boo hoo over my part in all this, and absorb what Austin had endured and is enduring, of course, the doctor I’d woken up early for pops in for a quick update, positive energy oozing from him.

I try to smile (hoping my eyes reflect that because, you know...masks) and sniffle-ly ask him if he can see a box of tissue anywhere as I press the tears from my eyes with the heels of my hands. 

He steps outside the room and comes back with one. 

I receive it gratefully and wonder if "getting blubbering moms tissue boxes" is in his job description.

WHITE CHEDDAR POPCORN AND GRAPE JUICE

I sit in the hospital cafeteria courtyard; my back to the sun. I feel it’s warm hug while a cool breeze teases my face and hands, preventing me from actually shedding my sweater. 

No one else is in the courtyard; perhaps too cold for them? It IS winter (in Arizona though - can you really call that winter?) 

For whatever reason, I’ve had the whole space to myself for about an hour. Maybe the crazy girl with the frizzy, 'messy bun' hunkered in the courtyard reading on her kindle, pounding down white cheddar popcorn like she’s watching a Netflix movie, and gulping grape juice like a third grader is a little off-putting. 

God, I love sitting in the sun; and sitting in it while straddling that threshold of being too warm or too cold - ah...what's the word for it -  perfect? Glorious?

At first all I hear are incessantly chirping birds. I watch little sparrows sunning themselves on the courtyard wall, fluffy and adorable; eyeing me to see if I’ll drop a cheesy popcorn kernel. 

I switch my attention for a second, and all I hear are the overwhelming sounds of highway traffic and construction truck back-up beeps. And once I hear it, I can't un-hear it. 

I take a deep breath; ahh, fresh air. Or is it? I am literally sitting in the middle of downtown Phoenix; a layer of smog can usually be viewed in the distance on the drive from my home in the desert outskirts into the local suburb.

But traffic noises and smog don't matter today; to be outside is all there is at this moment. 

I listen and breathe; relishing and leaning into this sensation of hope and survival. 

Thank You?

Alright. Who did it? Who prayed for me or sent me good ju-ju? Or was it some kind of cosmic group effort?

LAST NIGHT

Last night we were coming off a two day 18 hour drive to a point that we were about 2 hours out from home. A full moon lit the sky through wispy clouds; the two lane highway wound back and forth; the only lights besides the moon came from random oncoming headlights as well as our own high beams,  A John Grisham audiobook played through the bluetooth.

All had been peaceful for most of the two days, but then that cough crashed through the peace from the back seat. That cough Austin does when he tries to swallow and it doesn't go right. That typically PTSD-inducing, adrenaline rushing, chills up the spine and tightening in the gut cough.

I reached behind my seat, turned on the suction machine and picked up the Yankauer. Just as I was sliding it into the side of his mouth, he jerked his head, gagged, and then power spit all over my hand and wrist. 

Meanwhile, I continued to try to suction what I could so he didn't aspirate too much of it.

When he seemed ok and was back to half-smiling at Go Diego again, I replaced the Yankauer in it's slot, turned off the suction machine, grabbed a blue rag, wiped off my hand and arm, and calmly said, "He puked on my arm" as we continued to listen to the novel.

I did not feel that race of adrenaline, the feeling of despair and the deluge of thoughts like, "no, not again!" I did not rehearse through my head all the past times this has happened or play the reel of all the future times it might happen. 

I wiped off my hand, and we continued with the drive, listening to the audiobook while I tried to remember not to put my puked-on left hand up to my face. There was almost no thoughts which meant there was no emotional reaction which meant an answer to a Big Ask.

I have been asking, no begging, the powers-that-be that while the swallow problem is not resolved, then at least, can I just not react in a way that puts me into a grief or depression type spiral or in a way that makes me angry or resentful for days on end. I just want to be like, ok, this is happening, how do I deal with it right now.

And I did. I don't know how it happened or why. Exhaustion? I wanted to hear what was next on the audiobook? All I know is that I was more than a little amazed at my non-reaction. In fact, I think my husband refrained from saying anything because he didn't want to jinx it. 

THIS MORNING

This morning I was reading one of my, I guess you could call it, "self-help" books. Basically another person's perspective on how to approach life so I can continue to, well...choose life.

As I was finishing up a chapter, nothing I hadn't heard or read before, just another version of something similar, I felt like a switch flipped. It felt like, "I got it". 

I'm not even sure what "I got", but it felt like a glimpse of an answer; like it's going to be an attainable solution. Like, I don't know...like HOPE. 

And that transitioned into a great, positive mood for the whole morning. A mood that made me want to listen to music to match to keep it going. A mood that drove me to do chores I hadn't planned on doing today because I knew getting them done would feed this good feeling. And obviously a mood that made me want to write about it.

So that' it. I got to ride the good time bus again today, and I wanted to tell someone thank you. 

Perhaps it's you.

I didn't take a picture of the moon and road last night - regrets.
So here's  a random different road picture I took.  

Deodorant, Diet and Diety

Hello friends. Just thought I'd check in. 

I don't know if its spending three weeks in the arctic over winter solstice or eating too much bread and being on the verge of menopause, but my moods have been all over the place. Things got dark. And I don't just mean the amount of sunlight hours during the day. 

Around the beginning of October, I began making small lifestyle changes that I hoped would support my physical and mental health as I careen headlong into my second half century.

I've felt immense joy and surges of optimism within the last few weeks which I leaned into it for all it’s worth. You may have seen a few FB posts and creative spurts that came from that mood. 

But it did not last. At least not yet. I continue to have waves of sadness and anger (that I told you I'm not going to write about anymore). So I thought I'd list a couple of those lifestyle changes and see if I can restart the good time bus I was on.

ON DEODORANT

I stopped using anti-perspirant. 

I know. 

But the inter-webs said that aluminum and other heavy metals are not good for me so I'm opting to sweat profusely for the next 50 years. 

The first few weeks were tough. My particular concoction of sweat genes stink. And I mean, steee-eeenk. I don't know what voodoo-science aluminum is doing when it mixes with sweat to keep you dry and non-stinky, but it is magical. 

The non-anti-perspirant deodorants (i.e. non-aluminum) that claim to stop the stink...LIARS.

One brand hinted at what they were trying to accomplish, but my pits have stubbornly refused to comply. However, using their hint (sweat stinks when it mixes with bacteria on your skin), I started trying anti-bacterial or anti-septic products in conjunction with the deodorant, and thankfully, I believe I have things under control for the moment. 

Now, am I creating a super-stink bug because I'm killing off all my armpit skin bacteria? Would aluminum actually be the lesser of the two evils? Who knows, but at least at the moment I can be in the same room as my armpits without gagging. 

But because of the above two questions, this lifestyle change is still in the R&D phase. If you have found the ideal non-aluminum solution or data that says I don't have to give up aluminum in my armpits, please share!

ON DIET

I changed my diet. Yes, again...like we all do over and over. 

But this time, I actually stuck with it for like 7 weeks (!) until my sister-in-law brought homemade sourdough biscuits to Thanksgiving dinner. Sourdough is my kryptonite, and did you hear me when I said, THANKSGIVING. I gave myself permission to have ONE biscuit. This, of course, led to two biscuits, mashed potatoes, gravy, and two pieces of pie. 

That's ok. I forgave myself and got back on the wagon the next day. 

Then we had friends over for dinner, and I served them yeast rolls. I did awesome and stayed out of them until the next day when I devoured the rest "so they wouldn't go to waste". 

So I forgave myself again and restarted the diet. 

And then...Christmas cookies, an early Christmas Eve dinner consisting of lasagna, my sister-in-law's sourdough bread and her french bread loaf slit and slathered with garlic butter, homemade chocolate cake, etc...basically, diet? What diet?

But thankfully, the holidays with its traditions and temptations have finally come to an end. I plan to get back on that wagon...as soon as I finish this monkey-bread, the beef (and potato) stew leftovers, and all the snacks the big kids left in the wake of their visit.

Until then, I'm guess I'm vacation eating. No guilt, just momentary joy, followed by sugar crashes and mood swings. No big, right? Totally worth it.

ON DIETY

Fair warning. I'm about to confess and express some doubts here. I've done it before, so nothing new. But thought I'd be nice and warn you to stop reading now if this will be a problem for you.

Y'all know I’ve been on this journey of searching for who or what God is for a while now, even before Austin. (Austin just forced my hand towards taking the steps to really try to figure it out since my childhood conceptions and beliefs did not rise to the occasion when it came to the hardest things.)

At church through November, we sang "How He Loves" on Sunday mornings. It’s a familiar song for me and one I’ve written about before when I was in a very different head space (over 8 years ago if you can believe it.) 

It's a song that gut punches me every time I listen to it, sing along to it, belt it out Kim Walker style like it's my life's anthem (alone in the car, of course). And you'd say...well, Rachel, since it wrenches so much emotion from you, it's obviously from the Spirit. And I'd say...maybe.

Because I don't even know who "He" is anymore - like I was so sure I did when I was younger. I know the song is referring to a sovereign entity and the juxtaposition between "His" wrath and love - how it might be the same. But I still have a nebulous understanding of the who or what is the Christian triune God. And if you really want to know, I'm still angry with "Him". There I said it. Don't worry "He" knows. I told "Him" so yesterday. And the day before, and the day before that.

But it doesn't matter. I can apply this song to anyone who knows everything about me yet still extends grace, i.e husband or friend or family member to whom I've "mentioned it all" (that's a Bethenny/RHONY reference for my fellow sinners out there. Winky face.) 

These people are who this song is about right now and why I can still belt it out and get emotional doing it. They are the essence of a triune God, an essence I can see within many people around me, and not just the professing Christians. 

So what does that mean? Does it really matter if I understand exactly who God is? Who the Son is? Who the Spirit is? Is it ok to live in this space of uncertainty? Is it ok to live with mystery? Does God have to be a specific thing? Does Jesus have to have actually existed? Can they or the idea of them just be some kind of archetypal truths? Like is it ok if I say I believe the gist of it?

My Christian background says, no. I'm supposed to believe Jesus was an actual God-Man; and that God is an actual entity made up of three persons. But sometimes it just sounds like crazy talk to me. 

My Christian background tells me the Bible is true and, for the most part, even literal. Unfortunately the fact that any of it is literal is hard for me to believe now. I know what it’s like to write down a story about my very own first person experiences and have someone come along and say, no, you're wrong, it happened like this.... 

Who's right? We had the exact same experience, went through the same trauma, but came away with completely different memories of it, maybe a different order of events even, remembering only details that seemed important to each of us separately, but not necessarily important to both. 

I've learned my story is a story of impressions, not exact events. Same with your story. Same with all stories. You'll get the gist of the truth, not necessarily the facts.

So I almost prefer thinking of God as a mystery; something I can’t pin down. The truth is going to be "the truth" whether I believe or not, right? Truth does not need me to believe in it. It just is. So I guess, if I have faith in anything right now, it's that. Truth is truth. 

Growing up in the church means I never got that feeling of being called out of chaos. My life had always been fairly ordered. Chosen for me. Structured. Safe. Some would say I was blessed.

Well, I’ve been through chaos now. And now I'm waiting to see if Christianity is the answer or if it’s something else. Or if it's okay to understand Christianity in a different way and still be part of the Christian church and community. 

Will they love like a hurricane? Do they have grace like an ocean? 

Or is the answer just a lifestyle change? More whole foods and less heavy metals. We shall see....