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Can't Steal My Joy

Our Story Part 4- Learning to live after loss

October 15, 2016

The anchor

October 2, 2016

Ride for Ely

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We often make breakfast for dinner on Sunday eveni

We often make breakfast for dinner on Sunday evenings. Last night's meal was pumpkin waffles.
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My waffle iron beeped, letting me know it was done cooking the first batch. As I opened the lid, I winced as the waffles stuck to both sides of the iron. I forgot to spray. Shoot.
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And then, I remembered the homemade whipped cream and chocolate chips I had in my possession and images of stuffed waffles started floating through my mind.
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May you see your failures this week as an opportunity for stuffed waffles. 🤜🤛 #HappyMonday!
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#perspectiveshift #kitchenblunders #cantstealmyjoy

Infusion day, which means a much needed refill on

Infusion day, which means a much needed refill on brain juice! Love this sweet little boy.

A couple nights ago I had an incredible dream about this bubba of mine.

In my dream, Ely was just like he is now-- affected by batten disease, blind, not much verbal language ability, etc.

Out of nowhere in this dream, he started telling me, in full sentences, all the things he was observing and understanding about the world around him. I was baffled by all that he could understand, and in my dream, it felt clear that I was learning something true about my son in real time.

Then, tears started to roll down his face and he said, "mama, a lot of days, my body feels really good. But some days, my body feels like it's going to die." Well, I had tears rolling down my face as I wiped his away and said, "I know, buddy. I am so sorry you have to fight this disease."

It was sad, but also an oddly intimate and comforting dream. I can't explain fully the gift this dream was. I have vivid dreams often, but this one was so different. No wonky random side stories, or unexplainable storylines when I woke up. It was as real as the scene in front of me now with Ely in a hospital bed infusing.

Maybe a gift from God that was a glimpse into the mind of my son whose thoughts, feelings, and understandings sometimes feel so locked away and inaccessible? I don't know, but it's been on my mind since early Saturday morning.

#adayinthelifeofEly #infusionday #giftfromGod #rarediseaselife #CLN2 #BattenDisease #biomarin #brineura #thankfulfortreatment

Anyone else's kids obsessed with Little Blue Truck

Anyone else's kids obsessed with Little Blue Truck? I love when this cool dude helps me "read" his favorite stories. 😍
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#adayinthelifeofEly #littlebluetruck #rarediseasefamily #specialneedsmom #disabilityawareness #cln2 #battendisease #miracleboy #differentnotless #rarediseaselife #team4titusely

Woke up this morning in a funk. Couldn't put my fi

Woke up this morning in a funk. Couldn't put my finger on it right away, but felt it in my bones before I remembered in my mind.
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5 years ago today we gathered for Titus's celebration of Life service.
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The ache remains. The tears don't fall all the time like they used to, but it isn't hard to summon them.
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I sat in my car in the parking lot at Ely's school, tears rising. I took a deep breath, threw my shifter into reverse (manual stick driver here!), and backed out. As I moved out of the parking lot, this tree captured all my attention.
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The life, the death, the beauty in it all. This is life. This is my life. And the most hope-filled part of it all is the promise of new life in Jesus and his willingness to do life with me right now.
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So I looked like a knucklehead pausing in the middle of school drop off to capture a picture of a ho-hum insignificant tree to remind me of Life. 💛
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"In this world, you will have trouble. But take heart, for I have overcome the world." ~Jesus

Happy 16th Anniversary to my hubsters @dtbtrack20

Happy 16th Anniversary to my hubsters @dtbtrack20 ! Thanks to our awesome parents, we were able to get away for a few days to Southern Utah! Wow, it's beautiful down here!
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Yesterday was a day full of yeses as we hiked through the slots of Buckskin Gulch. It was crowded at the beginning, but once people saw the freezing cold water they'd have to wade through (some up to mid-thigh for this shorty 🙋‍♀️) the crowds thinned fast. We only saw a few people after that. We stood at the first large puddle (knee high) that we'd have to wade through and thought, "We get to say yes to this today. We didn't come this far to turn around, so let's go for it."
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I'm so glad we did! Yesterday was full of laughs, gorgeous views and stunning scenery, freezing cold water (brought back ice bath memories from college soccer), and a bit of a metaphor for our marriage-- hard treks, some painful (think walking barefoot on rocks), and joy!

A few weeks ago, I found myself on an impromptu ru

A few weeks ago, I found myself on an impromptu run. Ran toward this beautiful sunset for the first half. Not the best I've ever seen, but a beauty nonetheless.
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Then it was time to turn around and race darkness home. It hit me that my run felt a little like my life. We had to turn from the beauty we thought was ahead of us, and instead run head on into darkness.
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If you know me, even just a little bit, you know of my relentless pursuit of Jesus. But in my darkness when I couldn't pursue anymore, I actually learned of His relentless pursuit of me.
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I'm reminded of His promise in John 16:33 where he says "Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world." He has overcome darkness. And that is why I run a little harder into it, because I'm not going to find permanent desolation there, but rather redemptive victory.

We were out on a walk today when a plane flew over

We were out on a walk today when a plane flew overhead. I noticed Ely grow really still and lean toward the sound.
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I stopped walking so he could listen. "Ane," he told me softly. He sat there listening long enough, I had time to open my camera and capture this moment.
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I want to be better about listening like that. Leaning in, with intention, unhurried, no agenda, just listening.

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