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Bekah Bowman

Can't Steal My Joy

Home | Our Story Part 4- Learning to live after loss | Hope on a broken bridge

Hope on a broken bridge

Our Story Part 4- Learning to live after loss

I sat there in his room, curled up in a ball as if that position might be my protector. Titus, my 6 year old son, no longer inhabited this room and the pain came full on in that moment. This. This is what I’d heard others refer to. The wave of grief thrashing so hard over you. If you give in to it, you drown in it and that’s painful. But to push it away is to stop living and become numb and unaware. I’m sorry, but I love my son too much to pretend it doesn’t hurt. And so I feel it. I’m engulfed and sorrow has drowned my heart. I’ve fallen off that bridge; the one that held comfort, security, and expectation. I look up from my place of desolate sorrow and see a faint outline far above me of that smooth, paved bridge. I can’t get to it, for I have fallen.

As I grieved, I allowed myself to gawk at what happened to us in a matter of a mere year and a half. I look at the pictures throughout my son’s room, all his different life stages, and I ask out loud, “What the heck just happened?” My mind quickly took me through our healthy delivery on that life changing day in late May, 6 years before. My baby boy who passed milestone after milestone at genius-paced speed. (I mean, come on… aren’t all our babies bits of genius?) I pictured how he always had a smile on his face, a twinkle in his eye. My toddler who learned to outwit me, copy me, woo me, anger me. The preschooler who greeted his daddy at the door every day after work, who loved to go to school and cared deeply for those around him. The kid who welcomed a baby brother into the world with love and enthusiasm and then two weeks later asked if his brother could go back into my belly. And then the nightmare memories. His first seizure. Then days with 100’s of seizures. His growing clumsiness. The desperation to search for answers so we could fix whatever was causing him all this pain.

And then, the diagnosis came and it wasn’t good. It was Batten Disease which is fatal and incurable. I could no longer hear him say mommy, for he couldn’t speak. He no longer ran to meet daddy at the door, for he couldn’t walk. He no longer enjoyed his favorite food, chocolate chip pancakes, for he couldn’t chew and swallow. He no longer laughed at his brother’s goofy antics, for he had gone blind. And then on September 17, 2016 it swallowed him whole in one final breath. This was not what I had planned or expected for my sweet, adventurous, joyful Titus.

  • pic of Titus for blog

As I dove deeper in my wailing and desperation to find solid ground, to stop this emotional free fall, desperate for ground zero because perhaps I’ll at least be able to stand, I cried out, “Lord, I cant. I just can’t. Please be here. Be in me. You’ve gotta take over because I literally just can’t.” I’m frozen.

It was subtle, but when I surrendered to the pain and surrendered to Him, a sort of kindling ignited inside. This pain can’t be for naught.  As I envision where I had fallen, I look around and see a treacherous bridge ahead. It climbs large mountains and falls into deep ravines and goes beyond what I could ever see and know in that moment. And I know then, I must walk this broken bridge. This brokenness, this is where I will now live. I look around and familiarize myself with sorrow and find myself washed up at the foot of the cross, seeing it at an angle I’ve never seen it at before. Seeing my Lord, Jesus, in a way I’ve never seen Him before. He was utterly broken and beaten and given in to complete brokenness so that in our brokenness He could become enough. The promise it held was glorious and balm to my wounded soul. My grief, our loss, my not enoughs, and what ifs and if onlys have brought me here. Am I foolish to still desire the uncracked, paved bridge far above me? I might be, for those walking above cannot see the beauty that lies deep in the crevices and dark cracks down here.

As I stand up in Titus’s room, I put one foot in front of the other and beg for strength to continue because, the truth is, I really do want to continue. I want to see God redeem the ugly to beauty. And in that moment, He gave me eyes to see out my back patio window, a potted plant with a broken stem… it was a near exact copy of a picture he had shown me in my mind that I had drawn in a journal entry over a year before. At the end of that broken stem was the most beautiful blooming yellow flower. Hope.

IMG_20161220_130156

Okay, Lord. If this dark, steep, split apart ravine is where I will find you, where I will see with new eyes beauty to behold, where I can be true to who I really am and what I really feel, then I will walk this treacherous, broken bridge.  But only because I know you are God. You are good. You are enough. AND you will redeem. So as I walk I lift my eyes to the hope you provide that feeds my soul. Hope that is found at the foot of the cross.

“Jesus said, But this is how God will rescue the whole world. My life will break and God’s broken world will mend. My heart will tear apart – and your hearts will heal. Just as the Passover lamb died, so now I will die instead of you. My blood will wash away all of your sins. And you’ll be clean on the inside – in your hearts.” -Sally Lloyd-Jones from the Jesus Storybook Bible

Thanks for listening…

Bekah

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April 14, 2017 ·

Previous Post: « No time like the present
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Comments

  1. mamafish6 says

    May 17, 2017 at 3:42 am

    Tears are running down my face. I’m asking the Lord to lift you up. With a surgeon’s precision, your words are so precise and, yet, coated with all the LOVE that speaks directly to another mom’s heart. Brave woman. Warrior mom. God’s delightful daughter. Thank you. Bless you💞

  2. Teddie H. says

    April 17, 2017 at 3:22 am

    Bekah, thank you for your honesty and transparency in all you write. I love you for recognizing God’s Hope even from the bottom of the abyss of sorrow because He is there always. Hugs, Teddie H.

  3. Gretchen says

    April 15, 2017 at 3:00 pm

    So beautiful, thank you.

Trackbacks

  1. It was you – Can't steal my joy says:
    June 25, 2017 at 1:39 pm

    […] good bye for now to Titus. Uncertainty and grief do not equal hopelessness, but rather I have hope and great anticipation for what is to come. Thanks for journeying with […]

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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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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. 

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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." 

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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
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5 years ago today we gathered for Titus's celebration of Life service.
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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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