Saturday, June 14
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#miraclesforAvryJo
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#miraclesforAvryJo
Saturday, June 14
Avry had a good night, and we were all up around 6:30. It made me chuckle—when’s the last time I actually set an alarm to wake up? These days, my schedule revolves entirely around Avry’s meds and how she sleeps. I used to wake up at 5:45 AM every morning like clockwork… what a jolt back to what once was.
This morning, we all laid in bed—luxuriously—just like normal people do on a normal Saturday. 😂 That was hands down the best part of waking up early today.
Jake made a yummy breakfast, and then the day was off and running. Jake and Trace left for Tractor Supply, and Avry and I swung by Amy’s to grab a few more ice pucks she had kindly frozen for our snow cone setup. We were barely getting things arranged when Thomas and Amy showed up—what a gift. It didn’t take long for me to realize I just didn’t have the physical or emotional stamina to carry the day. Still so weary. Their presence was such a relief—I didn’t even have to ask. Amy ran to Dollar Tree to pick up the few things I’d forgotten, and they just stayed. Honestly, as they were leaving, my heart wanted to scream, “Please don’t go. Just stay.” I love having them near.
We stayed for about an hour, but the noise and crowd were a lot for Avry—she was overstimulated and ready to go. There weren’t many people who came by today. I’m pretty sure last weekend would’ve been much better with the Tractor Supply market going on, but sometimes plans shift and we just roll with it.
Trace came home happy. He didn’t sell many snow cones, but he had fun—and that counts. If you came by or bought raffle tickets—thank you so much. Every bit of love means something.
Later in the afternoon, Jake had to run back to the hospital pharmacy. We were having issues getting one of Avry’s prescriptions filled again. Even though our town has grown, our pharmacies haven’t—and they are far from reliable. We don’t have a 24-hour pharmacy, and it often takes days to fill her meds. They ended up resubmitting it so we could pick it up from the hospital pharmacy, since she’d already gone a few days without it. So grateful Jake was able to grab it today.
When we got home, the Snyder family had left the sweetest bag of gifts on our porch for the kids. It was beautiful. Sometimes I just stand in awe—What is God doing through all of this? The way our local community has shown up in love and generosity is beyond touching. Strangers—actual strangers—have become our unexpected army of kindness. I constantly meet moms who come up to me and say, “You’re Avry’s mom,” and the compassion in their voices takes me off guard. I feel like we’re being carried by a whole group of people we’ve never even met. And somehow, in all the heaviness, I know: we are exactly where we’re meant to be.
Avry and I slept a lot today. Like I’ve said before—the more I sleep, the more tired I feel. It’s like my body finally knows it’s allowed to slow down… and then it crashes.
Avry just wasn’t feeling great today. She played on the floor with Trace for maybe seven minutes, and then all she wanted was to be held in Jake’s chair. That’s always a sign of pain. As soon as I got her first dose of pain meds in, I could tell she perked up a little. I suggested we go to the pool, and her face lit up! We didn’t last long—maybe 15 minutes—but she sat poolside with her bubbles and her little bucket, and she smiled so big. And for that moment? It was 100% worth it. Just to see her feel happy.
Later I needed to run Jake into town to move his truck. He’d left it in the rain at Tractor Supply. As we were heading in, Avry said she wanted to go to Denny’s! Jake had just asked me earlier, “Where’s the good food in this house?” And I laughed. I’ve kind of given up on stocking groceries lately—every time I do, we end up back in the hospital and I have to give everything away. It’s discouraging. We’ve still got meals in the freezer that I’ve been rotating through, but honestly, none of us have had much of an appetite since we got home.
We decided to try Denny’s anyway—hoping she might eat a few bites, praying the smells wouldn’t overwhelm her and trigger more nausea. She knew exactly what she wanted, but not long after we sat down, she started crying. Her belly was hurting so bad. I ran to the car and grabbed our “just in case” stash, and thank goodness—it helped. She ended up eating about five bites. Was it worth it? 1000% yes.
Tonight it took hours to get all of her medications in—each one has to be spaced at least 30 minutes apart. She’s so tired. So weak. But she’s smiling. She’s loving. She kept hugging all of us and telling us how much she loves her family and how happy she is we’re all together
I’m soaking in every hug and every smile because I know I’m going to need to borrow this weeks for next week to carry me through.
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