June 13 At Home
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#miraclesforAvryJo
Friday, June 13
This morning we all woke up upstairs in our own beds—and while that might sound normal and a boring detail to most, to us, it felt like the Taj Mahal of luxuries.
Jake and I normally trade off nights sleeping downstairs with Avry, but after nearly three weeks, I just needed my own bed. Truth is, so did she. She ended up in our bed last night, and Jake eventually moved to the guest room. 🙈 Not exactly the rhythm we want to get into long-term, but my back needs a few nights to reset. We tossed around the idea of moving our bed downstairs or even buying a king-size bed to fit all three of us and her feeding equipment. But the truth is—she’s not home often enough or feeling well enough to sleep upstairs. Still, I miss my husband. I miss going to bed with him and waking up beside him. And if having a little girl sandwiched between us is what it takes for now, it’s worth it.
This morning Jake and Trace headed to Weimar to pick up the portable building that was built and donated just for Avry. A company Jake works with created it as part of a fundraiser—we’ll be selling raffle tickets and giving it away, with all proceeds going toward Avry’s cancer journey. I ordered banners, and Trace is getting his snow cone supplies ready. We’ll be set up tomorrow morning (Saturday) at the Tractor Supply parking lot from 9–12. Trace is so excited!
Amy and her sister Maria came over this morning. We took Avry for a stroller ride, then sat down to paint. Amy brought a beautiful glass tray and watercolors—Avry had so much fun mixing colors.
But I can tell she’s not feeling as good. She’s extra clingy—always a sign of pain. She hasn’t walked much, and she’s said her legs are hurting again. I’m sure it’s from the bone marrow procedures. It seems a little better than last time, but still enough to keep her from resting well. Her nap was cut short—I suspect pain woke her. She just wants one of us with her on the couch, always.
The other Amy (bless her heart) ran errands in town for me, then came back and folded laundry, tidied up, and did little things around the house. The kind of help that lifts a burden more than anyone realizes.
Jake got home around 4, and we opened some more care packages. Thank you, thank you. Trace and Avry love opening them—and it brings a lightness to these days.
Tonight, we took a long walk. The humidity is thick, but everything is so green—it’s almost tropical here in Bastrop. The beauty is unusual for June , but goodness, it’s sticky.
Before bed, I gave Avry everything I had for pain. She was begging to go sleep in “Mama’s bed” again. We’re planning to get up every few hours to stay ahead of the pain. She’s still so happy to be home—but her voice is soft tonight, and she looks so frail. Yet somehow, she manages to be the kindest little soul. She lights up when we’re all near. Her smile is weary, but so full of love.
She cried quite a few times today. Out of nowhere, she started talking about her “Texas neighbors” on Shiloh—the little girl she used to play with every day. She keeps asking when we can move back to our White House. “The one we just painted!” she says. And her daddy just built that ramp. She wants to ride her trike on it again. We try to explain that we need to stay where it’s safe for her—but it’s hard. She doesn’t understand why everything feels different now. And the truth is, this isn’t home. It’s a house that holds our things. We’re not here but a few days a month altogether. It’s a place we’re deeply grateful for—a safe haven God provided for us, more than accommodating, full of kind people and a supportive community—but it doesn’t carry the history or the joy of life beforecancer.
Sometimes it hits out of nowhere, and we look at each other thinking, What in the world is happening?
Still—tonight, we get to sleep at home. No beeping monitors. No vital checks. No one entering our room every few hours. Just quiet. Privacy. Peace.
I think back to life before March. I took so much for granted. Crawling into my own bed every night. Breathing without fear. Not begging heaven for a miracle while watching my child suffer. We break again and then hand our children over to their Creator—asking Him to hold them close, to cover them in peace, and to bring healing in His time.
I used to think we couldn’t feel opposing emotions at the same time. We’re living proof that joy and sorrow can hold hands. That grief and gratitude can share the same breath. That something can be hard and holy all at once.
We are home. Together. And tonight, Avry is here with us. She is healing. She is smiling through the weariness. We get to love her, hold her, care for her.
This life may look nothing like we imagined—but it’s still full of breaths and beauty. And for every single bit of it, we are so, so grateful.
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Lucia Martin
Jewel Nolt