Dear Austin: On Grief

Dear Austin,

It’s been 5 months. 

This last month was the hardest yet. I feel like I cry everyday.

Sometimes sobs just bubble up out of me with no warning; sometimes they are preceded by a glance at a photo, a walk past your day room, or a strong memory.

I miss you so much.

I thought I knew grief. I did not. I thought all grief is the same. It is not.

I now think grief due to unrealized expectations is different from grief due to loss. Not harder, not easier, just different.

I mean, loss includes unrealized expectations. I expected you to keep on living. I expected your care to continue to consume my life. I expected you might outlive me. I expected to see your smile every morning, and hear your coos and chirps throughout the day.

But loss is also final; there are no more unrealized expectations. There’s just an end. A hole in my soul. A gap in my routine. A missing thread. 

A screaming silence.

 

Dear Austin: Snuggling God

Dear Austin, It's been four months.

It feels like your life has been reduced to a story; photos in a frame; words on paper; fading memories in your loved ones minds; crushed bones in an urn; your life energy released back into the universe, back to the Divine Source, back to God.

I wish I could snuggle you again. 

You weren't a fan of being held in a lap; it was hard for you to breathe easily and get comfortable because of your twisted, awkward body. 

But you didn't mind a big hug while you were lying on your side; I'd bend over and wrap you in my arms and press my cheek to your cheek, feeling your smile when your cheek squished up and pressed back to my cheek in return. 

If I made sure to slide an arm within your arms, you would pull tight; exerting a hug like pressure back to me. There were times I became very uncomfortable in that bent position; not wanting to move until you let go.

Those who know me through my writing, know that I've struggled trying to figure out how to "Love God". I'm always thinking about it, trying to sort it out in my head. 

Which is the problem. 

I'm always trying to use my mind to define God as something concrete rather than the more nebulous Divine Source/Love Energy/Christ Mystery that "He" is.

But since we are human and need to experience the concrete to understand the indefinable, the mystery-unveiled probably lives in the other half of that teaching, "Love Others". 

I loved God when I loved Austin. 

I held and snuggled God; and God hugged and smiled back, cheek to cheek.

Dear Austin: Why Now?

Dear Austin, Where are you?

Maybe it’s because I loaded 2000 photos of you onto a digital frame; maybe its because the frame cycles through all the photos every 2-3 hours; maybe it’s because I see your whole life literally flash before my eyes throughout the day, but I can’t get past that you were here, you existed in physical form, and now you don’t. 

You’re now just a memory I’m desperately trying to hold on to.

————-

I’m reading a book that I’ve already decided I’m going to need to read again with a pen in hand.

Perhaps it’s because your leaving is still so fresh that any book speaking about Christ mysteries would resonate with me; or perhaps the author’s words feel like they confirm my own learned experience with you. Whatever it is, I feel throat tightening, nose tingling, eye watering symptoms as my head and heart nod in agreement.

And as I’m reading, the familiar truth “with great love comes great suffering; with great suffering comes great love” hovers within my little brain, and lands within my little soul. 

A mystery now known.

———————

The questions linger. It took me so long to come to terms with how to care for you, how to love you; to be at peace with our life situation; to embrace the adventure. 

So why now? Why did you leave after it seems like I finally figured it out? We only had one clear year of acceptance out of almost 13!

I wanted more. I needed more. I wasn’t done. I had so many plans to make up for lost time; but time ran out.

At moments in my deep sorrow while gazing at your beautiful little face in the photo frame, I can feel you say what I don’t want to hear:

“Its ok, momma. I taught you how to love. Now go love others; go love God.”

The Divine Breath

It’s the second meeting of the women’s Bible study group. I sit nervously debating whether or not to share my answer to one of the discussion questions. It's one of the few in a ‘round about way’ that I filled out an answer for.

But one of the guidelines/rules (a literal list handed out the first night) is that the Bible is the ultimate truth. So as a rule follower, and since I read and listen to so many sources now, I could not remember ever reading my exact answer in the Bible so I wasn’t sure if I should share (yes, there are passages that parallel or could support my answer, but I can’t think of an exact description like the one I’ve internalized somewhere along the way). 

So thus my quandary. I could not remember where my answer came from. I just know that I came across it somewhere, and the idea got filed in my brain or heart as truth. Fortunately (or unfortunately?), before I could finish my internal debate, the group had quickly moved on to the next question; problem solved.

But I've been ruminating about it ever since. And I know I might get it out of my brain by writing about it here on my blog. And since I don’t have any rules, I've decided this is what I will do.

The study book had us read about a few names of God found in the book of Isaiah. And a discussion question asked if one of the names resonated more than another. 

The answer was easy for me. I chose YHWH in response to a side note that reminded me that YHWH “was considered so holy that even scribes didn’t say it out loud.” 

I’ve heard that within the Jewish faith, YHWH should not be spoken. But at some point I came across the suggestion that it’s not that it SHOULD NOT be spoken, but that it CANNOT be spoken. 

The story goes, as I understand it, that due to the Hebrew breathy-consonants that make up the word, YHWH sounds like it’s being breathed when spoken; and when breathed/spoken, it sounds like breath itself. 

I find this to be a beautiful, concrete image of the role of the Divine in creation; or as the Bible puts it (and I'm pretty sure this one is in there), the Breath of Life.

So when I filled in the blanks of the “complete-with-your-own words-sentence”, I wrote “I can trust Yahweh with my existence because He is breath”. 

The answer came quick and easy; complete and confirming. It’s the divine breath that animates us; we pray the name with every breath.

(As I write this, I googled to see if I could remember the source of where I heard this YHWH story that has lingered in my mind for so long. I guess I shouldn't have been surprised that the idea is very common and discussed in numerous locations across the internet; that I'm not the only one contemplating it.)

___________

Have you ever noticed that when you are thinking about something a lot, you notice "the something" everywhere? For example, if you are thinking about buying a certain make and model vehicle, all of a sudden it seems like everyone and their dog is driving that particular car. 

I've always wondered if the instructions in the Bible about seeking and finding relates to this phenomenon;  like when I look for signs of Austin, I see him everywhere; when you look for signs of the Divine, you will see evidence everywhere.

At church this past week we sang two songs that (for me) noticeably referenced breath. One of the songs has been playing on repeat in my head for days:

It's Your breath in our lungs

So we pour out our praise

We pour out our praise

It's Your breath in our lungs

So we pour out our praise

To You only.

(Great are You, Lord, written by David Leonard, Jason Ingram, and Leslie Jordan)

 

 

Dear Austin: It’s Been Two Months

Dear Austin, where are you?

Usually when I have thoughts of sadness, angst, or despair it physically manifests as tightness in my chest and throat (along with tears, of course).

No one told me losing someone unexpectedly would physically manifest as nausea; I can’t think about the night you left without wanting to vomit (along with tears, of course). 

—————-

I gather all of your oxygen supplies by the door for the DME company to pick up. As a borderline save-in-case-of-emergency hoarder, no one prepared me for the panic I feel giving away your equipment; how will I take care of you properly if you return home?

And this is just the first round.

—————-

I drive your wheelchair van to the conversion-vehicle dealership we originally bought it from to get an appraisal and bid for buy back. 

I sit in the waiting area remembering how excited and proud I was that I was able to get every feature I wanted for you; I researched the hell out of that van. 

I pull out of the parking lot into a mood of soft gray skies, drizzly rain, and Bryan Adams singing “Everything I do, I do it for you” on the Bluetooth; I glance in the rearview mirror to see if you are smiling. 

“Zoom, zoom, Austin.”

One Is The Loneliest Number

On a Sunday morning about a month or so before Austin left us, I walk alone into the school gymnasium where my church holds its services. Husband is home taking care of Austin for whatever reason: sickness, weather, or we started too late to get Austin ready. 

The greeters greet. I briefly smile, but barely make eye contact, looking past them rather than at them. 

Eye contact is intimate. It means I know you or want to know you. It means I should remember your name.

I have a hard time remembering peoples names. Even those I’ve spent time with and have known in the past, very familiar faces. I recognize them, yet can’t recall a name when put on the spot. So I just find it easier to avoid people, if possible.

This became even more of a necessity or habit as I gradually dropped out of attending church functions and serving in ministries. 

I used Austin as my excuse. I either felt guilty leaving husband home alone to care for Austin; felt guilty spending time preparing for or working on church projects at home (since I tend to immerse and not come up for air until done, leaving Austin on the back burner); felt guilty for leaving Austin with a nurse or family member when I left him all day at school already, or felt guilty that I never could completely commit to “homework” or show up to every meeting. 

That’s a lot of guilt.

It was easier just to let most activities go, church or otherwise, in the name of Austin.

I take a bulletin that lists all the groups and events that are going on this winter and scan the room for family. At least I could remember my family’s names.

I see my dad. Thank goodness; a buoy in the ocean . I go stand near him. We hug and make small talk. I ask if he is staying for the next service. He says no; he just plans on counting and leaving, having already sat through the first service.

I scan the room again and see my sister-in-law. In a state of relief, I make a bee line for her. However, she is speaking with someone else, and as I get near, I can tell I would be interrupting so I u-turn it back to safe harbor next to dad. 

At this point, I’m overwhelmed with the realization that I am a stranger of my own doing in my own church. Church suddenly becomes the loneliest place on earth.

And you know what’s coming. Without warning, I begin to cry as waves of loneliness crash over me. Lots of snotty tears…in public.

Of course, dad is concerned and looks super uncomfortable. So I blubber about how lonely I feel here; that I have no friends; that family is all I have and I don't see anyone available to sit with; and that I’m probably going to leave. . .

Dad then declares he is staying, and that I will sit with him. My sister-in-law ends up sitting with me too. I can tell she’s aware something is wrong but is treading lightly about asking since I am still sniffly and teary-eyed.

I do my best to just stare straight ahead or at the ceiling for the entire service (the best place to stare when you are trying to get tears to stay in your eyes rather going down your cheeks); thoughts roiling through my head as I analyze how I’ve ended up in this state of aloneness.

________________

Over the next couple weeks, I have periods of uncontrollable lamenting at home while taking care of Austin by myself; husband may have been at work or traveling on those days. All I know is I try to only allow myself to openly go deep into feelings when he’s gone; to get it all out so I don’t bother him with it on normal days. 

But I’m not afraid of letting feelings wash over me in front of Austin. It’s cathartic and my therapy. And he isn’t going to tell anyone, right? Usually he just laughs and giggles at all my sobbing and wailing as I uninhibitedly pour out my soul to whomever might be listening in the aether.

But was he as unaware as I thought? I mean, once we got the Talker, we began to realize how much he understood. And while exciting to think he knew more than we gave him credit for, I now realize he may have known (and internalized?) so much more about my ongoing struggles with being a caregiver, periodic bouts of unhappiness, and now, my intense loneliness since I’ve never shied away from expressing myself when I thought “no one on this side of the veil will hear me” (just maybe my neighbors).

But was he listening? Did he feel responsible for my “plight”? 

Did he choose to exit this life at his next opportunity because he worried about me? 

___________________

I sit in the Women’s Bible Study as we go around the table doing introductions. We are supposed to give a little history about ourselves and why we are interested in studying the Book of Isaiah (the topic of the 7 week study).

I’m dreading my turn. My answer is not to know more about the Bible or God. My answer is way less holy than that. 

Fortunately, I’m almost last and everyone has set the pattern of what to say. Our history is translated into how you ended up in this community.

It’s easy to tell how I ended up here. I follow their pattern…28-ish years in the Texas/Arkansas/Oklahoma area, 15-ish years in Montana, and the last 10+ years here because I have a medically-complex child, and the melding of extended family and a children’s hospital close by are were necessities. 

Of course, as I mention my medically-complex child, I have to mention, in case anyone is living under a rock, that he happened to pass away at the end of November this past year. And of course, I have to choke this info out in between tears.

Then I’m supposed to say why I’m interested in studying Isaiah so I, more or less, say that it isn’t WHAT we are studying that I am interested in, although, I end up declaring "I DON'T KNOW WHY I’m here."

But the truth is, I do know why. 

Based on my feelings that were brewing up to the day Austin left, I’ve been wondering if one of the reasons he left me is so that I wouldn’t have an excuse to be lonely anymore. 

He left me alone so that I won’t be alone.

That is why I was sitting in that room. 

Last Sunday at church, I had told myself that I would sign up for the next Women’s Bible Study, no matter what is was, so that I can re-make friends and not be lonely in church.

I’m doing it for Austin.

Dear Austin: I Hope

Dear Austin,

Where are you?

Do you remember how I was looking for you? Begging you to let me know you are alright?

I asked you to visit me in nature? And you sent me a lone bee.

I asked you to visit me in my dreams, and at first, you refused. 

Every night I went to bed, hoping to dream of you, to see you one more time.

_____________

And then about 3-4 weeks after you left me, you came to see me for a whole night in my dreams! 

I was able to wake up and go back to sleep without missing a moment, picking up right where I left off.

And remember what you did?

We were at a school or in a play room somewhere. I was sitting near your wheelchair when you suddenly decided to turn yourself around and try to slide out of the chair without my help. 

For some reason, instead of jumping up to help you, I just watched.

At first you stretched your longer leg down to the ground, testing it. It was strong.

Then you slowly slid your shorter leg (the one we called your Nemo fin) down to the floor until it made contact. It was strong.

You were tentative and wobbly as you let go, but the leg had somehow grown to match the length of your longer leg, and they held you up. You shifted back and forth, testing your legs. 

You turned and carefully walked away from me...and then you let out a laugh and ran! 

I was in shock. 

You ran and ran, around the room, to the big window, past other kids, to the other side of the room out of sight. You just ran without looking back.

Eventually you ran back to me. I gave you a big hug and told you how excited and proud I was of your new skill. You just smiled and laughed and ran away again. 

I didn't see you again in that room.

Later in the dream, we were riding a bus home, maybe from that place. 

The bus pulled over because there were some men in robes blocking the road. 

When it stopped, some of them boarded the bus and started evangelizing, trying to tell us about "salvation" and "the good news" and "the gospel".

I bluntly told them I didn't need to hear it, and I pointed to you.

I said, "Look at him, I have my salvation right here!"

________________

Oh, Austin. 

I hope the dream is true.

I hope you are running free and having fun. 

I hope you know I miss your little smile, and grin, and belly laugh. 

I hope you know that no one could have taught me what you've taught me.

I hope you know that I'm a better person for having known you. 

I hope you know that your short, difficult life had purpose.

I hope you know that I love you.

Oh, Austin.

Dear Austin: I Want

Dear Austin, 

Where are you?

Since we left to go north for our winter vacation on the heals of your Memorial Service, and since we didn't get home until yesterday because we didn't have the constraints of your school schedule, today felt like the official first day of my "new normal" since you left us. 

I went to work, but you did not go to school. I don't like it.

I want to sing your "Good Morning" wake up song. 

I want to stroke your soft hair and arms as you squish your face and fuss and try to ignore me. 

I want to see your eyes try to open as you finally turn your head and body towards me. 

I want to see that little morning grin when you recognize me.

After daddy carries you or I pull you in your zoom-zoom chair to your day bed, I want you to tell me with your talker that you want to watch Blues Clues. 

I want to give you nose drops and suction your nose and throat. 

I want to count to 6, 6 times, while we do your breathing inhalers and you try to dodge the spacer. 

I want to brush your teeth and suction the foam from your cheeks. 

I want to ask you to roll on your back and watch while you always do your best to try to do it yourself. 

I want to clean your "button", add ointment, and tape fresh 2x2 gauze around it. 

I want to scrub your face, ears, neck and torso with a damp wash cloth. 

I want to put eye drops in your eyes. 

I want to change your diaper and put a clean shirt and shorts on you.

I want to take your temperature and o2s. 

I want to put on your socks, ankle and torso braces. 

I want to lift you into your chair and get you positioned for the drive to school. 

I want to check your backpack for meds and supplies. 

I want to load the suction machine, food pump, and talker onto your chair. 

I want to tuck your monogrammed blue rag under your chin. 

I want to buckle all the straps on your chair. 

I want to wheel you into the garage and into the wheelchair van and hear the lock click. 

I want to squeeze on either side of the chair to reach the seatbelt and fasten it. 

I want to look in the rearview mirror as we back out while asking you if you are ready to go to school.

I want to ask you if you want to go see friends, teacher, and your nurse.

I want to watch your face as I speed up and we talk about going zoom zoom.

I want to see your big grin while I play the music loud.

I want you.

Dear Austin: Puzzles and Lone Bees

Dear Austin, 

Where are you? 

I look for you in your day bed and in your night bed; you are not there. I look for you in my day dreams and in my night dreams; you are not there.

I hear the phantom alarm of your food pump; until I remember you are not here. I feel the jarring panic of needing to check on you; until I remember you are not here.

I’m already forgetting all the struggles of keeping you alive; how hard it was. I now only remember that you WERE alive; how good it was. 

Why did you leave me? Were you really done? Did I fail you this time? 

I thought I was so good at taking care of you; until I wasn’t.

They say pride goes before the fall. Was this the fall?

______________

Your life was a puzzle; it’s fragments on the table in a pile of chaos. 

Slowly we began to find the edges; to create and know the boundaries of what we had to work with.

At first we worked frantically and in a hurry. It felt like we were racing against time. We wanted a quick and perfect outcome.

And gradually the pieces sorted into some kind of order that we felt we could control and start to see the big picture. 

Like looking at the photo on the puzzle box we looked to research and other parents stories for guidance; trying to find clues and solutions as quickly and accurately as possible. 

But as the years went by we eventually learned to slow down and enjoy the process of working the puzzle rather than trying to complete the puzzle. 

We took our time just looking for the next piece that would fit exactly next to the one we just played. We stopped looking at the big picture and were satisfied with just the next solution.

Sometimes frustratingly, we tried pieces that didn’t fit; but when we found one that did; oh, that’s when we got a thrill, and we felt the satisfaction and hope to keep going.

Until the moment that last piece was assembled. 

Then all we can do is stand back and take in the full picture and completeness of the puzzle. There are no more pieces to be added.

There’s always a few days after a puzzle is completed that you want to leave it on the table;  to admire your work and what you went through to get there. 

This is were I am living. At the point of realizing the puzzle has been completed; but not wanting to crumble it up and put it back in the box, yet. 

I wish there were more pieces left to be played.

______________

Where are you, Austin?

Right after you left us, for several days I searched for you in nature. 

I asked you to come back to me; to assure me you are ok. 

I had three experiences with a lone bee. It was relatively cold outside so I was surprised to see a bee. But is was sunny, too.

The first time the lone bee hovered right in my face as if it wanted to look me in the eye. I startled and instinctively waved a hand to shoo it away. Only seconds afterward, I wondered if that bee was from you.

The second time a lone bee hovered around my arms. This time I controlled myself better so I could watch it. I still think I flinched too much so it couldn’t land.

The third time the lone bee landed on top of the backyard wall close to where I was standing near my roses. It sat there while we observed each other. It soon went on its way.

I will continue to look for you in lone bees. 

Just Enjoy Him While He's Here

Hours before Austin left us, I was planning to throw a birthday party for him. He was going to be 13 in January, and I’d never thrown him a party before. I never saw the point. I didn’t think he noticed one way or other. We’ve never been big birthday celebrators. All the excuses.

But Austin spent several days a couple weeks before he left us, insistently on the birthday party page of his talker. I have no idea how he found the page, but he kept saying things like: party, cards, birthday, etc. over and over again. I would acknowledge what he was saying, reset to the main page, and he would find his way right back to the party page. 

Ok Austin. I hear you! 

So with 13 being a milestone age, I texted my big kids and their girls to see if they would help me plan a party. Of course, I got an enthusiastic yes. I was looking forward to surprising Austin with the party he’d been asking for. 

Can y’all believe it? Austin was here amongst us for almost 13 years. 

He has been my identity for almost 13 years…who am i without him? He was literally the reason I had to get out of bed every morning.

_____________

Patrick loves a movie called “Family Man”. He makes us watch it every Christmas. 

It’s a story where the main character (played by Nicholas Cage) is living what appears to be a very happy, successful life dominated by power and wealth. 

But one night, he is given “a glimpse” into a different kind of life that, while full of struggles, turns out to be way more fulfilling.

I can’t help but think of that movie as the world seems strange and empty right now. 

I’ll wake up and can’t tell if the glimpse was that “we had a medically complex child”, or if the glimpse is that “we’ve woken up without one”. 

_____________

I’ve had weird thoughts like I can just ask God for a do-over - which I did. 

(I also had these same thoughts in the very beginning after his ultrasound that told us things were not going to go as planned - I felt like, “I’ll just ask for a do-over”). 

In both cases, the answer has been No.

_____________

Patrick’s constant reminder to me has always been, “just enjoy him while he’s here”. 

And finally somehow, I internalized those words and came to a place of acceptance and love and gratitude for Austin.

By the end of 2022 (last November, I checked), I rebranded his story in my mind (I also rebranded his story on his social pages) from “Praying For...” to “Choosing Life”. 

This year, I really started to believe he was going to outlive us! 

I invested in cute, new blue drool rags to match his wheel chair, and ironed name labels on them. I bought smart, colorful school polos from Childrens Place instead of more generic t-shirts from Walmart. 

I started asking around about next steps for Highschool, and thinking about special needs trusts and guardianship, and wondering which of my boys would step up to take on the task of his care and came to the conclusion that they would end up fighting over the privilege. 

Everyday we tried our best to choose life this year - meaning living life in the NOW; living the adventure (not perfectly, but it was an overriding thought, at least for me.)

_____________

Patrick and I keep saying to each other these past few weeks since he left us, "he was having such a great year”. 

But after digging back through all the photos and videos for the memorial slideshow, I realized he had ALMOST 13 great years!

I’m the one that had a great year. 

I was finally able to set aside all my expectations and love him now, in the moment. I was finally able to “just enjoy him while he’s here”. 

Was here.

Austin Chase HagEstad : January 5, 2011 - November 26, 2023 (Obituary)

Austin Chase HagEstad, 12, of Buckeye, Arizona, went home to be with Jesus on Sunday, November 26, 2023.

Austin was born to Patrick and Rachel HagEstad at the Community Medical Center in Missoula, Montana on January 5, 2011. 

Austin is remembered for his adorable smile, infectious giggle, his increasingly loud vocalizations when he really wanted to get his point across, his sense of humor and sarcastic wit revealed through his eye-gaze talker, and his indomitable spirit that continuously chose life over and over again until his body finally refused to cooperate. 

Austin is survived by his parents, Patrick and Rachel HagEstad; brother, Michael HagEstad and wife, Emma; brother, Jonathan HagEstad; grandmother, Susan HagEstad; and grandfather, Lyndell Scott. He is preceded in death by his grandfather, Gary HagEstad; and grandmother, Barbara Scott.

A memorial service celebrating his life will be held at 2:00 pm on Saturday, December 9, 2023 at The Church at Sun Valley, 26252 W Desert Vista Blvd, Buckeye, Arizona held in the Festival Foothills Elementary School gym.

Memorial donations can be made to the SEPTSA (Special Ed PTSA) at Kingswood Elementary in Surprise, AZ; the Foundation for Blind Children; or the Ryan House. Austin benefitted from all three of these non-profits and/or schools. 

___________

"There are children who rely on the help of others to survive their entire life," Lee observes. "Many people think it is better for them to go to heaven as quickly as possible, because life on earth would be too difficult for them. But God sent them to the earth with disabilities. They're not the unnecessary ones in the world. God sent them to earth with a purpose. Disabled children teach many people, change many people and help people reflect upon themselves, which is why they are the educators of society." Pastor Lee Jong-Rak, The Drop Box

"And whether you believe in miracles or not, I can guarantee that you will experience one. It may not be the miracle you’ve prayed for. God probably won’t undo what’s been done. The miracle is this: that you will rise in the morning and be able to see again the startling beauty of the day." William Kent Krueger, Ordinary Grace

Was It Just a Glimpse

Hello friends. I don’t know the best way to do this right now so I’m just ‘ripping off the bandaid’.

Austin passed away unexpectedly early Sunday morning, November 26, 2023 just after midnight. 💔

A Memorial Service celebrating Austin’s life will be held on December 9 in Buckeye, Arizona at The Church at Sun Valley (Festival Foothill’s Elementary gymnasium) at 2:00 pm. (26252 W Desert Vista Blvd, Buckeye, AZ 85396)

Also,  Mass (one of several I’ve come to find out) is being offered for Austin on December 10 at Christ the King in Missoula, Montana at the 10am service….for any Missoula friends that would like to attend mass for him.

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....

I Have A Story; I Have A Secret

Austin is finally trialing an eye gaze system thanks to his OT and SLP at school. We have the gadget for a month. 

When they first hooked it up, they were demonstrating how it worked for me. They calibrated his eyes and then put it on a page for ‘places to go’. 

He almost immediately zoned in on the ‘house’ icon and kept staring at it so that it kept saying [I want to go] “home home home home home home….” We were like, no not going home yet, buddy! Ha ha ha.

But after I left and was sitting at work, I realized that the house icon looks kind of similar to the Blues Clues house at the beginning of the show! As you know Blue’s Clues is one of the only 3 shows he likes to watch, and probably his favorite. 

So I think he thought that tiny house icon was his Blue’s Clues show and was staring at it waiting for it to play! 

The size of icon didn’t matter because sometimes at home he touches the iPad enough to make the app small in the corner. So he is used to trying to find it, and he will watch it even if small! 

I’m just impressed how quickly out of all those screen of icons, he zoned in on “his “show”. He’s pretty smart when he wants to be, if that’s what he was doing! 

*I’ve included video below of when I first hooked it up at home today. He was all over  the place.

Then there was a long pause as I listened from the next room. 

Then he ‘said’ something like, “I have a story. It’s a secret.” 

So true, buddy. So true. 

Can’t wait to hear it!

Rebranding His Story

As we get closer to Austin’s 12th birthday, I felt the urge to change the name of Austin’s Facebook page to better reflect his story. I feel like we aren’t in the more desperate phase of “Praying for…” anymore. (I mean, prayers are always accepted, needed even, obviously.) 

I mean I heard myself accidentally say out loud to my husband the other day (more or less), “I finally feel like Austin is going to be here a while so I bought him his own puke rags with name labels!” So, yeah, it landed just like you think it did. 😂

I realize how weird it sounds and like I’m an awful mom, like I haven’t loved him fully. 

But being told Austin wasn’t going to be compatible with life and that he wouldn’t  or shouldn’t survive, I guess I’ve existed on the brink of constant anticipation of loss for years. And, for me that translated into building a wall around my heart and mourning early and often so maybe it won’t hurt as much if such a loss actually occurred. 

Well, I guess with almost 12 years of surviving, Austin has ‘maybe’ convinced me that I can chip away at my wall a little and perhaps stop mourning his loss while he’s literally alive and lying next to me. ❤️

I mean, when you think about it, he’s really just been such a trooper all these years; choosing life over and over again even when things seemed dire. So there’s no reason at this point to expect anything different from him. He’s going to fight to live. That’s just who he is. 💪

So that’s why for now, I’ve changed his Facebook page name to Austin Chase: A Choosing Life Story.

Let’s all sit with it and see how it feels. ☺️

On Brain Hemispheres, the Corpus Collosum, and Consciousness

This is for my science-y peeps who probably roll their eyes every time I mention crying. Well, read on my logical, reasoning, questioning, Spock-ish friends! No crying today.

I’m just always curious and never satisfied with what I know. I feel like there’s always something more. 

So ever since finding out about Austin’s Dandy Walker brain malformation, I’ve been interested in all things brains. Some of Austin's most interesting brain descriptions include the following:

• Dandy-Walker malformation with large posterior fossa cyst
• Macrocephaly
• Hydrocephalus
• Agenisis of cerebellar vermis
• Agenesis of the corpus callosum
• Severe brainstem hypoplasia
• Mild cerebellar hypoplasia-left greater than right
• Large multiseptated supratentorial cyst
• Decreased supratentorial normal gray matter structures
• Gyral abnormalities with heterotopic gray matter in bilater cerebral hemispheres

Well, this morning I was reading some super cool stuff about right and left brain hemispheres and how it's possible each hemisphere might have its own consciousness and reality, but because the left typically has speech, it might be the only side we "hear", while the right side might not be acknowledged because it is essentially "silent". 

And between our hemispheres are fibers called the Corpus Callosum. It's the part that connects the two sides of the brains and sends info back and forth. These fibers existing between our brain hemispheres might also be the reason we perceive a complete unified identity rather than two separate identities. 

However, Austin has the above listed 'agenisis of the corpus callosum' which means his fibers are absent or diminished. 

So do you can see how this gets interesting? Does he have two personalities? Does he have two consciousnesses? Can he switch between them based on which side of his body is receiving input or stimuli? 

I don't know! But what if?

So if you want to play along, read the attached excerpts from the book I’m reading on my kindle, Waking Up by Sam Harris (he's a neuroscientist and philosopher) and tell me what you think! 💫🤔🧠🧐

The Lightness and Love of Living Again

The neighborhood is buzzing with chainsaws as folks cut up and remove tree-victims of last night's storm. She gives a cursory glance out the front and back doors. She doesn't see any downed trees of her own, only patio furniture tossed around the yard and at the bottom of the pool. A Texas Sage shrub is holding a chair in its branches.

She feels some relief that she can put off the yard clean up, sit down, read, drink coffee, and write, while waiting for Austin to declare he's ready to be up.

About a month ago she told you about a downward spiral she felt her moods and thoughts were heading, and what she was going to do about it. 

So she did it. She re-read some books. She listened to the podcasts that resonated with her the most. She immersed herself in where she found salvation before.

And now she can feel the lightness and love of living again. 

She knows she can be free of the mental suffering brought on by her habit of reliving past stories or creating future stories as long as she can remember to bring awareness to the present moment. The past holds stories that don't exist anymore and the future holds stories that will never exist as she imagines. The only thing that truly exists is this present moment, what Tolle calls the "Now." 

But knowing and doing are two different things.

(And speaking of this Now present moment, Austin is howling about being aware of not being asleep anymore....)

ON WRITING ABOUT DOWNWARD SPIRALS

Last week her aunt texted and mentioned that she (her aunt) had read her blog post. She asked her aunt which one because it had been awhile since she had posted, and her aunt said the last one, and she said, oh, she thought she (her aunt) had read it already, and her aunt said, "No. I have read similar, but not that one, I don’t think...." 

And that jarred her. Like stop dead in her tracks kind of jarring. Her aunt's comment woke her to the realization that she needs/wants to be done writing about her downward spirals. Done with complaining about her life situation. Done with the public wallowing. She's been there done that. Over and over. She just needs to be done.

So she has decided she'd like to write about more positive things. Like the recent times she recognized the downward spiraling thoughts and feelings, but instead of wallowing in them for days on end, she acknowledged their appearance and then watched them go on their way. She overcame them by not making them her identity. She wasn't the victim. She was the hero. 

THE ONE THING (AGAIN)

A couple nights ago, she was home alone while her husband was working late. Austin did the One Thing: his coughing and choking and puking thing. As she stood over him to suction and clean up, she could hear and feel her typical thoughts and emotions rising. 

But then all of a sudden, she felt in her inmost being, "Oh, this is when you usually start getting really upset. You think about all the other times this has happened, how gross it is, how unfair it is that it happens to Austin and also to you, how much you hate it, how other people don't have to deal with this, how this will never end, how you will potentially be doing this clean up for years to come, how you will have to do this into your old age when you will be frail and possibly physically in pain, how if you die someone else will be burdened by this, etc., etc...", and then her inmost being said, "But look, you know you don't have to go through those mental gymnastics. None of those things are happening right now. Your mind is creating the suffering you imagine. The only thing that needs to happen right now is the action of cleaning up, the emotion of loving Austin's inmost being, the feeling of compassion as you get the privilege of helping him when he cannot help himself. 

The only thing that needs to happen is staying present in this moment and to do what needs to be done."

So, that's what she did. And the stress and anxiety, the suffering, vanished. She cleaned him up. She cleaned his bed up. When a thought regarding the past or future tried to interrupt, she took a breath in and out, watching the action from inside herself as the breath passed over her throat and out her nostrils. And she continued helping Austin. This is the practice she has been learning. And for this one little time, she did it. And if she can do it once, she can do it again. This is why she says she is done spiraling. 

She can only hope. She can only practice. And as they say, practice makes perfect.

**********

Just curious, when you feel yourself being taken over by a downward spiral, do you have a practice or something you do to wake yourself out of the trance of those negative thoughts and emotions?

**********

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Today has enough trouble of its own." Matthew 6:34

"As soon as you honor the present moment, all unhappiness and struggle dissolve, and life begins to flow with joy and ease. When you act out the present-moment awareness, whatever you do becomes imbued with a sense of quality, care, and love – even the most simple action." Eckart Tolle

"By changing what you cling to in the present, you can alter the future." Jordan B. Peterson

 

The Biggest Small Thing

She’d secretly been in a downward spiral again. Sadness; depression; grief. The old ”friends”, just coming and going, here and there. Mainly when she was alone.

Apparently she’d been hiding it well enough since her husband exclaimed, “I thought things have been going so well! You seem happy”, when she finally confessed her moods to him. (Telling the truth to her husband as soon as she becomes aware of her negative feelings is her new thing. He just may not know it yet.)

Yes, well. She’s worked on hiding these moods for years, mainly without success, but with work, getting better at it over time (she imagines this is true, anyway). But privately she’d been letting small things set her off again; which were giving rise to discontent; allowing envy to escalate.

She’s risen out of this cycle before (i.e. the work), but until she admits she is even ‘there’, she won’t take the steps to course correct. Plus she didn’t want to have to admit anything was wrong! She’s happy! She’s good! She’s accepted! She’s surrendered!

ON DISCONTENT

But then there’s the biggest small thing. The gagging. The coughing/sneezing. And finally, the exclamation point…PUKING. Austin’s attempt to manage his secretions has been the biggest thorn in HER side since his birth. Out of all the things his body does and doesn’t do according to the “compatible-with-life” manual, this is the one thing that really, REALLY goads her. 

The ONE thing. 

The one thing she’s asked God for. Begged for. Pleaded for. Raged for. The one thing that seems to hold her family back the most when trying to live their lives like regular people. 

The puke-possibility always has her on edge. Whether she can be diagnosed with PTSD or not, she can certainly identify with something like that. The potential puking has to be planned for, antipated, and expected. And if he’s sitting up for too long, it’s almost a g*d d*mn guarantee.

This is why (in case you’ve ever noticed) she doesn’t take him on very many outings besides doctors, school, and rarely more now, church. She cannot emotionally tolerate people staring at them, judging them, or pitying them. 

Other people don’t know the circumstances of why, out of the blue, he just starts gagging, coughing, scream-sneezing, and puking all over himself, herself, his wheelchair, and most likely the floor next to their family trying to have a nice sit-down dinner.  

So she decided long ago, she’s not putting herself in the position of apologizing and trying to make people feel comfortable anymore. 

She’s tired. 

Do you here that universe?! SHE’S TIRED!

She’s tired of explaining. She’s tired of trying to hide her true feelings during his dramatic/traumatic attempts to breathe. And she’s tired of pretending to stay calm and pleasant for all the onlookers when inside she just wants scream, flail, and throw a two-year old’s fit. 

She’s just as grossed out and dismayed as everyone else. She, too, finds it disgusting. But instead of reacting how she feels inside, she has to stay calm for Austin, as well as assure everyone around them that it’s ok, it’s normal, it’s just his condition, blah, blah, blah. And she’s even smile while doing it! Ugh. 

ON ENVY

So when she hears about families, your family, jumping into the car for a fun outing together across town for the day, or taking a trip to somewhere new that maybe involves an airplane, or even the mundane “put the kids in the car” and go to the grocery store, she’s envious of your freedom; and then she’s discontented

with her ‘chains’. 

Cue negative-feeling spiral. Hello darkness, my old friend….

ON AWARENESS 

But now! Now she’s aware and has admitted there’s a problem! Which means now she needs to do the work. Back to the basics. Rediscover her salvation.

Looking back to the first time she climbed out of this hole, she feels like she was rescued from despair through three authors. It was a progression of revelation. Each building on the next. 

She had first turned to CS Lewis: Mere Christianity, The Great Divorce, Surprised By Joy, A Grief Observed, and finally The Problem of Pain.

Of course she was looking to find her hope in Christianity. It was her upbringing, her lens through which all things are filtered. So she figured she’d find answers from an author who is touted as the religion’s greatest apologist. She listened to several of his books, checked out through her library app, a few several times, trying to grasp the truth he seemed so confident in. She found she resonated most with The Problem Of Pain.

Hiking at this time in her life while Austin was in school became her meditation and also something to do while listening to her books. So you know how you remember explicit details of where you were and what you were doing when a shift happens in your world? 

Well it was after hiking the North Mountain Trail in Phoenix, and while sticky and sweaty, sitting on a cold concrete bench in the shade of a picnic shelter at the North Mountain Park that her aunt, on the phone, asked her if she’d ever heard of Eckart Tolle. 

She had not. But within days she had downloaded and listened to The Power of Now, plus any other digital recordings of his she could find and checkout through the library. That’s when she came across A New Earth, and later, his synopsis Stillness Speaks. 

Her shift in perspective had begun at this point. She felt she was finally being given practical tools she could apply to help herself out of her funk. 

After her emersion into everything Tolle, this was about the time her son mentioned something about Jordan B. Peterson. And as a mom who loves to read what her kids are reading hoping to get insights into their innermost psyche, she downloaded 12 Rules For Life. It was good stuff. Wake you out of your trance that life should be easy kind of stuff.

So after listening to the audio book, she searched out more if his work which led her to his podcasts, and specifically his 15-Part Lecture series on The Psychological Significance of the Biblical Stories. She found herself resonating so much to these lectures, that she’d notice she was audibly “mmm hmm-ing” and “yes-ing” and smiling along with his observations and presentation of Biblical stories she had grown numb to. It felt miraculous.

She was finally feeling alive again! Hopeful! She had so many tools and new perspectives at the touch of a play button, and now these perspectives were being added to her mind, and hopefully, creeping into her being where it might someday become a part of her! She felt so good.

ON THE BIBLE

But why not just turn to the Bible straight out of the box, you ask?

Well, she grew up with it. The words from memorization were ingrained in her. But having heard the words, their rhythm, so much, she just couldn’t hear the essence of its truth anymore. She’d get caught up in the minutia of the stories, weighing “truth” against whether or not they were literally true so much that she couldn’t hear or perceive the big picture and actual “truth” anymore.

Lewis, Tolle, and Peterson gave her back this big picture through fresh lenses.

Lewis taught her life is hard for everyone. Just experiences differ. And it’s OK to question God. 

Tolle taught her life is hard, but there’s an essence of being/awareness within us that can accept and surrender to life circumstances and essentially end the perceived suffering in the moment, and with practice, perhaps ongoing and forever.

Peterson taught her life is hard, we have to accept that, but hope and joy can be found in the pursuit of the highest good/what people might refer to as God . One conscious choice/one little step at a time. 

So the big picture for her is there will ALWAYS be hardship, pain and suffering. But that’s ok when we learn how to put it in perspective. It does not have to be experienced as suffering. It’s our emotions and the body’s physical reaction to thoughts that seem to determine whether what we experience is labeled good or bad. If we can just observe the emotions and thoughts and not identify with them, the experience can dissipate into a neutral label. 

Similar to how often just getting perspective based on time passing and distance from a hard experience allows many people to change their label of that experience. Looking back at something hard that you went through and survived often gives rise to a feeling of accomplishment and satisfaction rather than despair and grief even though at the the time, you thought you’d never survive and endure it. We are usually stronger than we think we will be. 

So it’s our emotional and physical reactions that determine whether we cower or overcome; rage or rejoice; become the villain or the hero.

And she so wants to be the HERO of her story. 

So she’s returning to her basics. (Maybe not for the last time.) But she’s confident that the found truths that brought her back to life in the past will rescue her once again. God willing.