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....