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Bekah Bowman

Can't Steal My Joy

Home | Our Story Part 4- Learning to live after loss | Remind me again, please

Remind me again, please

Our Story Part 4- Learning to live after loss

He is faithful.

He is good.

He knows pain.

This is temporary.

He promises a hope that won’t disappoint. 

He keeps his promises.

He will redeem.

These statements have been running through my mind a lot lately. This month has proven to be an emotional roller-coaster for me. I found myself scribbling these truths up on the giant decorative mirror in our dining room because I needed to be reminded… often. Truth needed to be spoken to my soul, over and over and over and over.

Today, my baby sister and her hubby celebrate 3 years of marriage. Flashing back 3 years ago, I had barely made it to the wedding flying in at midnight on Friday night with little Ely in tow. It was supposed to be the whole family on the trip, Titus given the honor of ring bearer and I, the matron of honor. But circumstances didn’t line up as such and we left Danny and Titus back home occupying a room on the neuroscience unit at our children’s hospital. Titus had been hospitalized, yet again, for uncontrollable seizures. He spent long days there as they quickly weaned him off one medication to put him on yet another in an attempt to gain control over these seizures. It was heartbreaking to leave them behind. Ely and his cousin, Colby, did a wonderful job standing in as the ring bearers in Sarah and Michael’s beautiful wedding and we flew home at 6 am Sunday morning to be reunited with the other half of our little family. I remember arriving home, knowing Titus had just gotten discharged. Danny had made an extra stop before heading home to buy kites. (This was one of those moments I constantly thank God for gifting to us and prompting Danny’s heart in this way.) We joined them out on the big grassy park right by our house and watched daddy fly a magnificent shark kite. Neither of them had ever seen a kite before. I will never forget the excitement, awe and pure delight exploding out of each of our boys and it was contagious. I felt it too.

  • November 16, 2014. Kite flying. A memory forever written on my heart.

We had just plowed through one more obstacle to help our little boy and we celebrated that, but deep down in our guts we were unsettled, feeling as though something was coming – that we weren’t in the clear. We’d learned by then to enjoy the moments, but not to let our guard down. That year, 2014, Titus was the same age Ely is now. We had no idea what was actually lying in wait in both our boys’ bodies.

My heart aches for what could’ve been had Titus received an early enough diagnosis to get in to the enzyme replacement trial that opened just shortly after that kite flying day. But we didn’t, he didn’t. We had no idea what we were facing. And I constantly have to come back to…

“This is temporary.”

“God will redeem!”

“He promises a hope that won’t disappoint.”

“This isn’t over,” I say to myself as I ponder that beautiful memory 3 years ago. Titus’s story has not ended and someday we’ll be together with Christ in glorious bodies – perfect without disease! That day will come. And in the meantime, redemption is here too.

God gives us joy in the midst of heart pain.

He gives us peace in the middle of turbulent waters.

He gives us strength under weighty grief.

He restores my soul when the circumstances of this world and my own destructive patterns shatter it.

He gives direction and a sense of purpose in a dark pit that feels impossible to move from.

These are all signs of his love, his involvement, his redemption. This is God. Here and now.

So, until the day all is fully redeemed and restored whole…

He is faithful.

He is good.

He knows pain.

This is temporary.

He promises a hope that will not disappoint.

He keeps his promises.

He will redeem.

May truth hold our minds, hearts and souls captive in the midst of our heartbreaks, disappointments and sorrows.

Thanks for listening,

Bekah

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November 15, 2017 · 2 Comments

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  1. Mo Roberson says

    November 15, 2017 at 6:02 pm

    Love you sis!!! You and the family are such a blessing to me and many others!!! Love you!!!!

    Reply
  2. Cath Phillips says

    November 15, 2017 at 8:13 am

    Beautiful, as always! So, touched my heart & I look forward to flying kites in heaven with the energetic boy!

    Reply

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Bekah Bowman

Hey, I’m Bekah and I’m so glad you’re here! It’s my mission to help you find joy, belonging, and hope in Jesus. I wear many hats, but some of my favorite hats are being a coach’s wife and a mom to boys. Read more…

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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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