• Skip to primary navigation
  • Skip to main content
  • Skip to primary sidebar
  • Home
  • Can’t Steal My Joy — The Book
  • About
  • Speaking
  • Featured On
  • Blog
    • Our Story Part 1- The Beginning
    • Our Story Part 2- Receiving the diagnosis
    • Our Story Part 3- Journeying a different story than planned
    • Our Story Part 4- Learning to live after loss
    • Finding Joy
    • Living With Grief
    • Finding Truth
    • Living In Community
  • Join
  • Nav Social Menu

    • Facebook
    • Instagram

Bekah Bowman

Can't Steal My Joy

Home | Our Story Part 4- Learning to live after loss | Chasing Thankfulness

Chasing Thankfulness

Our Story Part 4- Learning to live after loss

Lord, my brain is mush. I don’t know if it’s a coping skill or if it’s simply just the way it is in grief. I’m kinda numb. I’m here to chase thankfulness because I want to feel something. And, in gratitude, I find hope and joy.

It’s weird… It’s not hitting me that this Thanksgiving is any different than the last one. We had Titus last time though. And the fact is, this time we are missing our party of 4. We are checking in as -1 and I don’t really know how I’m supposed to react to that. I’m not worried about what others want or need to see from me… but I’m not sure what I’m supposed to feel to help my heart grieve… or process… or move forward.

titus1
That moment when you have to sit and wait for the dreaded to happen… you stay and hold each other close.

It’s been more than two months since I’ve seen and held my boy. He left us. He actually had the strength and courage to leave us and face death. He held on as long as he could and I’ll always cherish those last days and moments. My heart held so much anguish, love, admiration for him in that final week. And now, my little boy is gone and perhaps what hurts the most is the admitting that here wasn’t the best place for him. That there – with you, Lord – is the best place. I know that. And it aches in my tightened constricted throat. In the quiet tears and nose gone runny. In the muscles flexing in my abdomen to keep the sobs to a minimum… Oh, I don’t know why I hold those back.

I cannot kiss the top of his head to show my love. I cannot sing silly songs and twirl him in an uncoordinated dance. I can’t even seem to dream about him… at all.

But what I can do… what I can summon the constricted throat and hot teary eyes to see and proclaim is thankfulness. One little piece of “Thank you” at a time.

Thank you for our neighbors who surprised us with flowers and cookies.

Thank you for time with friends who give us joy and provide a safe place to just “be”.

Thank you for sweet fruit from our tangerine tree.

Thank you for amazing smiles in the pictures Titus left behind that still ignite a smile in my soul.

Thank you for a husband who has chosen to love me through the ugly parts.

Thank you for the subtle lean of love I receive often from Ely.

Thank you for giving us such an incredible support system who, in this Thanksgiving season, we get to surprise a few with our tradition of Thankful Baskets.

Thank you for football, parades, and chocolate chip pancakes to enjoy with those close to my heart.

Thank you for a man who loves to cook holiday meals!

Thank for an opportunity to treat Ely in hopes his course of Batten will be halted.

Thank you for all our new Ohioan friends who surround us with love and support.

Thank you for redemption.

Thank you for love, compassion, grace.

Thank you for filling our empty buckets so we can pour them out again.

Thank you for power to live through brokenness with the Holy Spirit.

Thank you for holding my son.

Thank you for the way a yellow rose or sunflower gives me a gentle reminder that you love us and are with us through it all. That even when broken- to pour even more out and we will be full. That when we are on our last thread of our broken stem, we still know without a doubt that you are good, Lord.

And you are enough. 

And when that day comes that my stem fully breaks, and this earthly body is done, I will be with you, restored to beauty that reflects your glory… no more brokenness in sight. Just like Titus. Thank you for that promise, Lord. The very essence that is the fullest weakness and defeat in death actually becomes the vessel that fills us to the most completeness. Thank you for that kind of love.

We can rejoice, too, when we run into problems and trials; for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love. – Romans 5:3-5

And here, as I chase thankfulness, I learn to just be. That right now, in this moment, this is ok. To be numb, to feel hurt, to give and be given to… it’s really living. All of it. And so I sit in it and I move in it and I rub my eyes clearer to see in it. This life… it is all a sign of your love. And I feel my soul showered free. Free from expectation. Free from idealism. Free from the need to hide. Here I am Lord… you get all of me. Not just the accolades, the accomplishments, but you get the anger, the cursing of this life that leaves my lips, the spewed words that come out in hate. All of me is all of you and because of that, I know that no matter what, I am enough because you are enough. And for that, I am most thankful.

Thanks for listening,

Bekah

Share
Pin
Tweet
Email
Print

November 29, 2016 · 3 Comments

Previous Post: « The lost factor
Next Post: Glorious impossible »

Reader Interactions

Leave a Reply Cancel reply

Your email address will not be published. Required fields are marked *

Recipe Rating




subscribe without commenting

Comments

  1. Deborah Samson says

    November 30, 2016 at 8:30 am

    Oh sweet girl…what a beautiful post…from the gut…wrenching in honesty…let your wailing flow sweetheart…it brings healing to the soul and the spirit. I love you…
    Deb 🙂

    Reply
  2. Steve Phillips says

    November 29, 2016 at 6:10 pm

    Thank you, Pastor Bekah. You stir my heart again. He loves your whole story, all of it, as you are, and so do I.

    Reply
  3. Mo Roberson says

    November 29, 2016 at 5:04 pm

    Love you sis!!! Hugs….hugs….hugs….and more hugs!!!!

    Reply

Primary Sidebar

Hey! It is nice to meet you!

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…

  • Facebook
  • Instagram

Search by Category

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.
.
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.
.
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.
.
May you see your failures this week as an opportunity for stuffed waffles. 🤜🤛 #HappyMonday!
.
.
.
#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. 😍
.
.
.
#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.
.
5 years ago today we gathered for Titus's celebration of Life service.
.
The ache remains. The tears don't fall all the time like they used to, but it isn't hard to summon them.
.
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.
.
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.
.
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. 💛
.
"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!
.
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."
.
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.
.
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.
.
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.
.
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.
.
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.
.
I want to be better about listening like that. Leaning in, with intention, unhurried, no agenda, just listening.
This error message is only visible to WordPress admins
There has been a problem with your Instagram Feed.

Copyright © 2026 · Bekah Bowman · All Rights Reserved