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.

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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”. 

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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.

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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.)

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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.