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