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Bekah Bowman

Can't Steal My Joy

Home | Our Story Part 3- Journeying a different story than planned | Fear Overwhelming

Fear Overwhelming

Our Story Part 3- Journeying a different story than planned

I sat upright in bed, springing forward with fearful power, my body drenched in sweat, and in my semi-conscious and confused state I had to take a moment to decipher what was in fact reality and what wasn’t.

Reality: My husband and both boys are tucked safely in their beds.

Reality: All is well. Time to go back to sleep.

I had, yet again, a nightmare about losing track of my boys when they were around a large body of water. And my nightmare always ended with me desperately trying to save one or both of my boys as they succumbed to the deep waters they had shown no fear to and it swallowed them whole.

And I repeated the nightmare. Night after night after night. We had just moved to California. Living near pools and the beach were a new thing to me. Playing in the water with my two young boys was a new thing to me.

Truth was, in the day, our playtime in the water was some of the best family fun! But there was always a fear eating away at me. Don’t let go! Don’t take your eyes off them. They could die under your watch and you are here to protect them!

The nightmares slowed down as winter came, the air cooled just enough to make trips to the water not as appetizing and we moved on to other activities. But for months that nightmare haunted my sleep, taunting me that I couldn’t protect  my kids enough, that no matter how alert to them I would be in my dream it was strangled out by a nightmare as my sons were drawn to dangerous waters and swallowed up again. Over and over.

Danny noticed. I was restless and tired during the day. I continually asked myself, why this intense fear of losing my boys and not being able to protect them? Even with my eyes full on them. In these nightmares, my voice never worked, my legs always moved too slow. I couldn’t save them. All was out of my grasp, my control. And it devastated me night after night, week after week.

Fast forward a few months to April 7, the day were were hit with a new reality. Our son had a disease that we couldn’t control and it would take his life somewhere between 6 and 12  years of age.

Fast forward another few months to June 25. Our youngest was delivered the exact same diagnosis.

Reality: My boys both have a genetic neuro-degenerative disease that cannot be cured or, at this point, stopped.

Reality: I cannot save my boys and they are dying.

Nightmare brought to life. Fear that disables. Depression that overcomes. Security uncovered as an illusion.

This disease has ravaged through Titus’s body. Quicker than we could’ve seen it coming. How did I miss it… the last time I’d hear him roar or see him tackle his brother? How do I live courageously, still the mama, the protector? But with no control?

Fear seizes. Fear cripples. Fear blinds. I can’t be here. Fear kills.

It kills beautiful moments. It kills the ability to see those moments in harsh reality. It kills moments of closeness in relationships. I can’t be here, fear. Take my place setting away. I’m leaving. 

I can’t sit in a complacent tolerance of auto piloting to fear.Yes, it’s the easy response. But it’s the cowardly response. And it’s not of God. I heard a new-to-me song a few months ago. On a day when the symptoms of the disease were coming out strong in Titus. A result of the degeneration happening as a result of bad genes that we can’t fix. Here’s the words to the chorus:

When you don’t move the mountains I’m needing you to move

When you don’t part the waters I wish I could walk through

When you don’t give the answers as I cry out to you

I will trust, I will trust, I will trust in You!

-Lauren Daigle

Today I will protect my boys by knowing full well who my strength lies in… who my trust lies in. And I will not return to fear today. I will look to Him, the one who knows exactly where this is all headed and promises goodness. And I will walk this path with Him no matter how brutal this world feels. Because today love and joy get to win. And we find beauty, not fear, in Him.

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Living in the beautiful moments no matter the circumstances
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Some of our beautiful moments where fear will not rule!

Thanks for listening…

Bekah

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December 2, 2015 · 9 Comments

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  1. Blue says

    December 22, 2015 at 1:06 pm

    Hi Bekah,
    I just came across an article on Gordon Gray’s daughters who got diagnosed with Batten in March, 2015- https://curebatten.org. Just wanted to share in case this is helpful.
    Take care,
    Blue

    Reply
  2. shellyKing says

    December 16, 2015 at 7:39 am

    Hi Bekah, I wanted to let you and Coach Bowman know that my husband and I are praying for you today. O’Malley, our daughter and one of Coach Bowman’s hurdlers at Olivet, shared his text with us about your day today. Your blog is an inspiration to me and your strength is like no other. Thank you for being so real. It breaks my heart.

    Reply
    • youcantstealmyjoy says

      December 16, 2015 at 7:46 am

      Thank you so much Shelly! So thankful for our army of prayer warriors!

      Reply
  3. Shelly Stauffenberg says

    December 2, 2015 at 8:07 pm

    Thank you so much for sharing! I truly needed to read this tonight and I want you to know that God speaks through you to so many people and to me 🙂 thank you for being so transparent and letting God use you and for being such an inspiration to all of us!!

    Reply
    • youcantstealmyjoy says

      December 2, 2015 at 8:18 pm

      Thank you Shelly! I know you know first hand what I’m sharing as you’ve been through it with Josh. So thankful God can use us and our story to speak into you and others hearts!

      Reply
  4. Sue says

    December 2, 2015 at 6:05 pm

    Hi Bekah
    Last night my friends nineteen year old son was killed in a car accident. All day I’ve felt the enemy on the fringes, trying to stir up fear of losing loved ones. I think when you hear of loss of a loved one and people ask Were they a Believer? It’s because they want to know that those who are still here have Hope of eternal life together , that this life is not The one we hope for.
    It makes me aware of how important it is to share the Gospel. It is easier to trust in our good God when life is good, but I know that in your grief people will follow and see your Savior. The one you trust with your two sweet boys.
    Prayers for you and your family. Come Lord Jesus

    Reply
    • youcantstealmyjoy says

      December 2, 2015 at 8:16 pm

      Sue, I’m so sorry to hear of your friend’s son. Yes, so important to know His saving grace and incredible love for us. And also to know that He walks through the darkest times and gives us reasons to smile and celebrate in the midst. That doesn’t make sense to the world, but it’s available to everyone… that kind of peace. Thank you so much for sharing and for praying!

      Reply
  5. debsamson says

    December 3, 2015 at 12:52 am

    Another beautifully written post Bekah…one day it will be a book…compiled as a ministry to all those “out there” who have no where else to turn but to one mama who has been there. I love you 🙂

    Reply
    • youcantstealmyjoy says

      December 3, 2015 at 1:11 am

      You are so kind… thank you for these affirming words, Debbie. Love you!

      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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I gave up on sleep around 4:30 this morning. Ely h I gave up on sleep around 4:30 this morning. Ely had been up since 1:30 and it was clear his body was struggling to settle down and sleep. I had fits of horrible nightmares. At 4:30, I waved the white flag. We got up and I googled a good baked donut recipe.
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He's the one who saw an odd short man up in a tree and invited him into friendship. A man who was hated because he was a cheat. Jesus's friendship offered him a new start and love to guide him.
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He's the one who broke the news of who He was to a woman. And not just any woman, but one who was thought of as second-rate filth to the culture of that day. In His proclamation, He reminded her of who she really was-- chosen, beloved, and yes, loved.
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He's the one who went through what could perhaps be described as the most gruesome, torturous death. And in the midst of it, reached out to the criminal next to him and stole this man away from darkness and death and offered him victory and life.
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He's the one who held this mom as she held her son during his last breath. And in her grief and desperate wails, He grieved too, and promised Redemption and overwhelming Joy. Love shown through victory over death.
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I can't explain how central this is to everything. Absolutely everything. If you haven't yet, please--consider Jesus. Not religion, not a list of rules, not hurtful expectations "christians" have perhaps put on you or wounded you with.... not those things. Jesus. Please consider Jesus. 💛
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He is Risen. 🙌
Loving this beautiful 75° day out on the back pat Loving this beautiful 75° day out on the back patio with one of our sensory bins full of sea creatures. Sunshine was just what we both needed!
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I took Ely to the park the other day. There were a I took Ely to the park the other day. There were a couple of kids out on the playground. Trepidation grew in my heart as we got closer.
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I thought, "will he ever get to call someone 'friend'"?
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And then my next thought, "how many people with disabilities have grown up without someone outside their family and care team who they could call friend?"
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Before any of us call these kids on the playground jerks or blame their parents for their insensitive behaviors, can we take a moment to look inward?
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Was there a time you side-stepped, switched directions, smiled politely and walked quickly by when you were near someone different than you? I know I have. And it's not okay. I know those kids on the playground are probably also really cool kids. They were uncomfortable and didn't know how to handle it.
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This past Sunday was Ely's first Sunday back to church since the pandemic. A little girl about 3 years old asked if Ely "would like a warm hug?" I smiled. She moved toward Ely and gave value to his presence.The expansiveness of her comfort zone challenged mine. And may it also challenge yours. It only takes extending a gift of friendship.
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On a recent episode of the podcast, @bekahsbowman shared about finding beauty and goodness in the middle of unthinkable loss. This week, she is back to talk about carrying grief as she has navigated the diagnosis of a fatal disease for both of her young sons.

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