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Bekah Bowman

Can't Steal My Joy

About

  • 2015
  • Our brave warriors
  • letting go
    2018

Hello! So thankful for the chance to connect with you.

My name is Bekah. I am a coach’s wife, a grieving mommy, and a pursuer of the hard and vulnerable to find truth, joy and love! My son Titus went to be with Jesus on September 17, 2016 at the age of 6. A rare and fatal disease, Batten, or CLN2 took him far too early. My youngest, Ely, fights this same disease and is currently receiving a new treatment to slow the disease progression.

We believe that our story is a small part of the BIG God story. That is the framework in which I try to live my life. With a perspective that each day I get to be a part of the greatest story ever told. And you are a part of that story too! I’m thankful our paths have crossed here. Below are more ways to connect with us!

To learn more about our story: click here. This video was taken when Titus was still with us in the fall of 2015.

If you want to get to know Titus, who I’m sure is running through streams and riding on the backs of lions, here’s a music video put together by my husband, song written and performed by our dear friend Jeromy Deibler of FFH: Goodbye for Now.

Connect with and follow us on Facebook and Instagram as we update you on Ely and our journey through grief and joy!

How “Can’t Steal My Joy” Began

In November of 2014, my baby sister was getting married. I was the matron of honor and my oldest son, Titus, the ring bearer. Leading up to the week before the wedding, Titus could not escape terrible seizures. They were uncontrolled by medication and endangered him. The doctor took one look at him in clinic and sent us right over to the hospital where he remained for more testing and a drastic change-up in medication. As the countdown to this special day got closer, it was obvious we wouldn’t be making it to the wedding happening a few states away. We were all broken-hearted. How could I possibly miss my sister’s wedding?

A desperate perspective shift

Somehow we managed to pull together a plan and bought a plane ticket for myself and our youngest son, Ely. In a whirlwind trip, we hopped on a plane late Friday night to get there in time for the Saturday wedding. My husband would stay with Titus in the hospital. Ely and I would return early Sunday morning. And this was the life we were living for nearly a year at that point. Some unidentified monster kept jerking our family back and forth unexpectedly, ripping away plans and memories that were meant to be made. It angered me and yet I sought a perspective shift purely out of the need for survival. In that seeking, God met me in big ways and began teaching me about brokenness and beauty, about pain and joy.

As I learned these things, I would scribble them across the pages of my journal. And in those whisperings that scribbled across my heart, I felt a strong call to share. A friend of mine drove Ely and I to the airport late that November Friday and I mentioned this call on my heart to start a blog. She replied with an affirming enthusiasm, “YOU SHOULD!”

The Birth of “Can’t Steal My Joy”

But it wasn’t until March of 2015 that I finally took the dive. I signed on to WordPress and sat on the home screen where I needed to type in the name for my blog. Dun, dun, dun… The pressure to come up with something creative and catchy delayed my dive into the blog world. And then it hit me. The devil was trying so hard to steal my joy. This blog was my way of saying to him with a deep conviction, “You can’t steal my joy.” And this blog was born.

Here’s the thing… your story might look completely different than mine, but we all have something in common. We all have these broken stems and beaten leaves and we all have the potential to bloom full and beautiful despite our brokenness. Or, dare I say, because of? There is nothing that can illuminate the light better than darkness, am I right? And so here you and I are, our lives intersecting here and I am so thankful they have. We have power in doing life together as we enthusiastically affirm each other’s dynamic, glorious blooms that have come out of impossible brokenness.

Where to start

If you want to begin reading where it all started, I suggest beginning with “It’s all about the heart change.” Or perhaps “From the broken” or “This… this now”. To hear my war cry head over to “How dare I Joy”. If you’d like to know how in the world we’ve made it through the death of one son and the very same fate delivered to our youngest, I invite you to give “Community or bust”, “Ride for Ely” and “It was you” a read.

Most importantly, how in the world do I find joy in every breath? Well, because joy, I’ve learned, is not a what – it’s a Who. I share my heart here in “Why the why matters” and “Hope on a broken bridge”.

Dive in to this joy-world with me. Let’s step out of our comfort zones together, sharing vulnerably in anticipation of God doing something quite amazing. We are meant to champion each other, do life in community, shine light on the darkness and call out beautiful blooms in each other. And this is why “Can’t Steal My Joy” was born.

  • pic for connect page
    Our last day with Titus
  • Disneyland photo for connect page
    We loved our days at Disneyland
  • Titus and Ely pic for connect page
    Brothers = Best Buds
  • Titus and Ely for the connect page
    Titus and Ely meeting for the first time
  • Mommy picture for connect page
    Mommy, Titus and 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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