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Bekah Bowman

Can't Steal My Joy

Home | Our Story Part 4- Learning to live after loss | Just breathe

Just breathe

Our Story Part 4- Learning to live after loss

Ely was down for his nap. Successfully. That’s an important detail. I paced the parameter of the house. Lap completed, I began again. It was aimless. I was looking for my friends, Motivation and Inspiration. Two rounds through the house convinced me they were out and about and I would not find them here. I tried my hand at a fiction read. I made it through three short chapters before I realized there was nothing in me to even give this.

My mind jumped to my options. TV, Facebook, Instagram… Hmm…. Nope.

The house was quiet. Without even thinking about it, I found myself moving to the couch and curling up with Titus and Ely’s favorite Boise State Snuggy. I wasn’t tired, but then again, what would I call it? I had no energy to do anything. The desire and zest for any kind of project was depleted out of me.

It’s been an emotional few weeks for me. I’m not sure the trigger exactly. We have passed Titus’s one-year mark of going to be with Jesus. Around this time last year we were navigating Columbus travels and the clinical trial world with Ely. I know I have lots of reasons to feel deep emotions, but I truly can’t put my finger on what is happening in my heart and soul right in this moment. I laid down, closed my eyes. I lay still. Completely still. Which is impressive for me (ask my husband whom I drive crazy with my constant fidgeting). My eyes opened and fell on the canvas Danny had made for me for my birthday. An incredible gift; a beautiful family picture of Danny, Ely and I after Titus passed away, and photo-shopped in was one of my favorite pictures of Titus just before he had turned 4 years old. He fit perfectly between Danny’s arms and was slightly faded out, showing how close, yet how far he is now.

family photo 2017

How this has become my life, I’m not really sure. It just happened. I wonder at my evolving as a mom. And I feel a bit of a failure right now, if I’m speaking truthfully.

Ely’s bedroom door creaked open at that moment and I hear a sweet “Hi” float down the hallway. I returned a sweet hello back, beckoning my son to come out to the living room. His feet pitter-patted down the tile floor and he slid between the couch and recliner to get to where I was still laying snuggled under the blanket. My little one, he understands the need for a good cuddle. Without hesitation, he spotted his place next to me and burrowed in. I brushed my fingers through his hair as we both quietly laid there just being, him in his world, me in mine.

I thought of how I used to plan monthly themes and lessons for my boys. One month was “Goodnight Moon.” Titus loved that book. His first year of preschool, they had a program where they could borrow a book over the weekend from the library. His first weekend after school started, he brought home Goodnight Moon. It gave us all a good chuckle. He obviously missed the point of bringing home a new reading adventure. We read from the school copy all weekend, sent it back on Monday, and continued reading it over and over again with our copy at home in the months and years that followed. I did my mommy duty and pinned all the good stuff to teach language and comprehension from Goodnight Moon. We had a yellow chart I hung with pictures from the stories. We played matching games, made a storyboard, and practiced our words.

Ely interrupted my remembering as he hopped down from his snuggle-spot and ran over to the stuffed animal basket to grab “snake”. You might like to know we also have “duck”, “doggie”, “neigh”, and “Dumbo”. But “Snake” is kinda special. You see, I’m terrified of snakes. I downright can hardly even look at them! My brother knows this about me and has plagued me with images, videos, even real snake skin to watch my fears flood out of me in tears, screams and quick sprints away from the scene of danger. I’d like to say he’s grown out of this and that he’s matured now that he’s in his 30’s.

He hasn’t.

But I have grown in tiny steps to conquer this fear. Perhaps to some of his credit (Thanks, Brad). But also to some of the credit of having boys.

It was Titus’s second trip to the zoo. We went into the store at the end, knowing we’d likely buy something for him. I was thinking something cute and furry. He had other ideas and went straight for the snakes hanging down the far wall of the store. I felt a shiver and chill go down my spine. No joke. I tried to detour him to the penguins, or perhaps a cute fluffy lion. But he had his eyes on a green and black snake with yellow eyes, his favorite color, of course. After an inner dialogue that I needed to be the adult and this was truly a stuffed, fake animal and was not going to suddenly come to life and eat my whole family in the middle of the night, I said ok. Titus sat behind me in the car and all the way home he threw the snake at my head pretending it was attacking me. Lovely. What a boy. But it made all three of us, Titus, Daddy and I, laugh.

Ely climbed back up next to me, snake around his neck, the remaining part stretched out down next to me and again I wonder at my growth as a mom. Today didn’t feel like growth. I felt stale, depressed. I cuddled that snake and that cute little boy of mine in close. One tear fell down out of the corner of my right eye and I wondered at how it escaped without company. Perhaps it was just enough to remind me that I could still feel. I was still here. And yeah, this life still hurt. Deeply.

So much missing. I should clean the bathrooms. But I can’t. Nothing will work, hardly even my mind which is normally going a million miles a minute. I breathe, Ely breathes. I feel him, hold him tight. I used to feel Titus next to me this way. Right up to the moment he took his last breath. How I miss him. My heart aches and yearns to see my two boys together again. I can’t wait to see the two of them play and adventure in a pain-free, joy-filled place.

These days here feel so permanent. Hard. Like swimming through mud, they can be dark and difficult to move through. And yet I keep remembering that this is all so temporary. Sometimes that helps. Other times it feels like the voice reminding me of this truth is Charlie brown’s teacher and I can’t understand a word.

There is a resolve in me though. And knowing my current state and condition, I know it’s not a resolve of mine, but of the One who is greater than all this pain and heartache. I’m held. Just as I am gifted the moment of holding Ely. I breathe. My Abba – my God Almighty who fights for me, breathes through that breath and gives me courage to take another. We repeat. I’m not conquering anything today. But I’m doing great soul work in just being.

This is hard. Breathe.

This is painful. Breathe.

I’m not alone. Big deep breath.

It’s okay if all I can do is lay here next to my son. And just breathe.

photo of mommy and ely for blog
Mommy and Ely at one of Ely’s infusions

Thanks for listening,

Bekah

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November 21, 2017 · 12 Comments

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  1. Frances Lee says

    November 21, 2019 at 10:06 am

    The pain is still so deep. I admire your courage to experience and face it.

    Reply
  2. Steve Phillips says

    December 26, 2017 at 6:08 pm

    Bekah, Thank you. “We long for ‘now’ but we live in ‘not yet’.” Your maturity in the ability to trust God for who He is when the good feelings of His Presence are not felt is so instructive! Please continue to encourage us by sharing your journey with this kind of authenticity and raw reality. Cat and I love you so much!

    Reply
  3. Gretchen says

    December 6, 2017 at 11:09 am

    I try not to read your posts at work, because I always cry. You are such a remarkable woman, mother, and wife. Every word breathes new inspiration and strength into my heart and soul. Thank you for sharing your world.

    Reply
  4. Alana says

    November 30, 2017 at 5:54 am

    Wow, Bekah. You have such a gift with words and an eloquence in explaining your emotions. I am thankful for your honesty. Your joy is truly a reflection of the Lord working in and through you. I continue to pray for you, Coach, and Ely.

    Reply
  5. Stan Murray says

    November 22, 2017 at 2:30 pm

    Bekah, you are gifted with a God-given talent to express your deep-seated feelings in a way that people who have had the same experience. I can imagine that you have helped thousands of people who have similar experiences but cannot express themselves the way you do. Thank you for using your gift to help so many!

    Reply
    • youcantstealmyjoy says

      November 23, 2017 at 2:18 pm

      Thank you, Uncle Stan! Love to you all!

      Reply
  6. Mary says

    November 22, 2017 at 5:34 am

    I am a friend of Hannah’s and through her I have watched your family struggle with this horrible disease that has taken so much for you already and I become consumed with guilt over my very mundane problems in comparison. The Lord has given you all the strength to keep going in the face of insurmountable odds. I pray for you. I pray that a cure is found. I pray that God wraps his arms around you and carries you when you can no longer stand. Your boys are a such a blessing to your family and the world and I’m thankful that I’ve gotten to know even a small portion of you all in this harrowing time. God bless you all. Hugs and prayers for continued healing ❤

    Reply
    • youcantstealmyjoy says

      November 23, 2017 at 2:18 pm

      Thank you for your prayers and love for our family through Hannah, Mary! Means so much!

      Reply
  7. Dee says

    November 21, 2017 at 7:29 am

    You are such an awesome mom, wife and woman. You give strength to those who feel helpless and comfort for those that feel none is to be found. I admire you Becah for your strength in the Lord and your fight to find joy everyday. You, Danny and Ely remain in my prayers. Thank you for being the witness you are.

    Reply
    • youcantstealmyjoy says

      November 23, 2017 at 2:17 pm

      Thank you so much, Dee. Your prayers are so appreciated!

      Reply
  8. Jalaine Hagemeister-Zeringue says

    November 21, 2017 at 7:16 am

    Love your heartfelt words. Continually praying for your sweet family.

    Reply
    • youcantstealmyjoy says

      November 23, 2017 at 2:16 pm

      Thank you, Jalaine! Sending love to you and your family!

      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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The Batten disease community is a family we never The Batten disease community is a family we never wanted to be a part of (and resisted at the beginning), but once we accepted our presence in this new way of life, we've been so grateful for them.
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You wouldn't browse their profiles here on social media long before you'd be struck by how resilient, joyful, humorous, forgiving, determined and strong these kids are.
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We got a sweet gift this week from a fellow batten family, @charleighsjourney , and the words at the end of the book they gifted us speak a truth I feel deeply inside.
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What the world marks as weak and pitiful, God marks as honored and blessed. It doesn't matter that these kids are unable to communicate and process like their peers. They all carry innate, God-given value, and incredible characteristics, teaching us big things about life. Inspiring us. And I am so thankful each child and family have crossed our paths, teaching us things only they can.
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Nancy Tillman ends her book You're Here for a Reason, "You're here for a reason. If you think you're not, I would just say that perhaps you forgot--a piece of the world that is precious and dear would surely be missing if you weren't here."
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#allbelong #roomformore #aseatatthetableforall #battendisease #framily #friendswhoarefamily #completebodyofchrist #weareallneeded #disabilityawareness #disabilityinclusion #raredisease #CLN2 #indispensABLE
Liminal space has been on my mind lately. A space Liminal space has been on my mind lately. A space that is a transition, a crossing over from the old story into the new story. A space that tells of what was and holds anticipation for what isn't quite yet known, and at the same time holds almost a frozen middle where we can believe there is no story, or maybe even no hope.
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Its the walk down the empty hallway to the audition room. It's the minutes, hours, and days after a life-altering diagnosis, divorce, job change. I would venture to say it is the years we are living in that stand between what was a perfect Garden and what will be a redeemed Earth.
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I think of how Abraham obeyed when God told him to leave his home and go to a land God promised would be his inheritance. He left without knowing where he was going. And when he arrived at his destination, he lived there as a foreigner. Talk about liminal space. He lived in an awareness of what God was promising, though it was far off, and he welcomed it and lived believing God would keep those promises, even if he would never see the fulfillment of those promises in his lifetime.
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I'm not sure who is feeling frozen in liminal space right now with the transition of "story" happening in so much of our world--political unrest, social gatherings and the way we do school, church, how the world fights to define what is truth, etc...
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The story I dare to write here in this space is one of confident hope in the Light of the World. This confident hope feeds into kindness, humility, gentleness and patience (Col 3). It's a story I hope will tell of a growing resolve in me that cannot be shaken no matter the storm or unknown, because I lean into and on a Hope who simply will not fail. Take a look at Isaiah 11:1-5.
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Jesus, meet us here in these unknown, difficult, anxiety-ridden spaces and bolster us as we lean into your grace, direction, and love.
We were saying our prayers tonight and thanking Go We were saying our prayers tonight and thanking God for the various things from our day.
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Ely interrupts me, and says, "Rooooaaar!"
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I laughed. "Yep, and thank you, Lord, for Brown Bear, Brown Bear," I said.
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🎵
What looked to become a very short visit because of his intolerance to the noise turned into half an hour of Ely taking the lead and Mary, the music therapist, following along. Ely would hum and "sing" and she played the xylophone, and the two put on quite a concert in this tiny room of the pediatric cancer institute. My face hurts from smiling.
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