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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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Comments

  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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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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Waking up from such darkness made me even more aware of the light and hope today holds. As I mixed the batter and prepped the pan, I was filled with gratitude for Jesus. For who He is. For what He has done to this darkness. Friends, if you haven't yet--consider Jesus.
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He's the one who drew a line in the dirt between a woman labeled a prostitute and the rest of the crowd ready to kill her and he stood on her side and offered her love and hope.
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He's the one who reached out to touch a man who hadn't been so much as touched on the arm by someone for who knows how long because of his diseased body--a man who had been marginalized, oppressed, shunned. His touch gave value and love to this man.
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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!
For all you special needs moms (and dads too), I l For all you special needs moms (and dads too), I love this podcast, Embracing Holland. 

If you haven't heard the poem Holland, give it a Google. Chances are, if you're in this world of disabilities, you know that poem well. 

I got to chat with hosts Meg and Angie and we got into one of the topics I'm super passionate about--bridging the gap between churches and people impacted by disabilities. 💛 

If you are a parent of a child with special needs, I encourage you to subscribe to their podcast and join their Facebook group Embracing Holland Podcast Community.
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#Repost @embracingholland
• • • • • •
Attending church as a family is complicated when you are raising a child with a disability, for many, many reasons. So when we talked to @bekahsbowman about her experience, and what she is doing to build a bridge between ministry and disabilities, it was such an encouraging and inspiring conversation.

If you are connected to church ministry in any way, please listen to this episode, and check out Joni and Friends an organization dedicated to equipping people and churches to serve and include the disability community. 

Bekah has a podcast ministry she's starting called Room for More where she says all are not just welcome and invited, they are needed. @roomformoreministry 

She also has a book you can check out called Can't Steal My Joy: The Journey to a Different Kind of Brave, available on Amazon.
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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"Will he be accepted this time?"
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"Will they see past his odd mannerisms and learn that's he a really cool kid?"
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Once again, the answer was no, they would not. Ely was only worthy of a few side-glances, and with every step closer, a step was taken to put distance between him and them. Ely didn't know what was happening, but it broke my heart.
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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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The answer is: far too many. And it's a shame this world is missing out on the gift of their friendships.
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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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#DisabilityAwareness #differentlyabled #differentnotless #friendshipgoals #beafriend #notthathard #warmhugs #lessonsfromFrozen #handsandfeetofJesus #bettertogether #roomformore #allbelong #indispensABLE
Guess what today is?! Today marks TWO WHOLE YEARS Guess what today is?! Today marks TWO WHOLE YEARS with Ely's chest-to-brain port infusion system!!
🎉
This first-of-its-kind-ever-in-the-world system has worked flawlessly for two years now. 52 infusions under our belt and this system is gaining legitimacy and attention.
🎉
I'm grateful for the creativity of our neurosurgeon to think of this different delivery system. We made the switch to avoid potential brain surgery every few years and to allow the skin on his head to heal as it was getting thin and breaking open easily. But we've found more benefits than that in the process.
🎉
Since switching over, Ely has not struggled once with nausea (which was a common side effect for him before) nor have we had any bacterial infections or possibilities of one. He has so much more freedom to move around and we never have to worry about the needle accidentally dislodging as it's very secure.
🎉
I know this system won't be for everyone, and I realize we are still early in this journey and may have some bumps down the road that are yet unseen, but we're grateful to have been given the choice. Today, as we infuse #116 here at #stlukeschildrens I'm full of gratitude.
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#adayinthelifeofEly #rarediseaselife #infusionday #cln2 #battendisease #rarediseasefamily #RareDiseaseAwareness #DisabilityAwareness #differentlyabled #differentnotless #rarediseasemom #specialneedsmom #cantstealmyjoy #gratitude
This guy swiped his daddy's hat and thought he was This guy swiped his daddy's hat and thought he was pretty hilarious.
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He was. 💛
Part two released today on the Joni and Friends Po Part two released today on the Joni and Friends Podcast... I pray as you journey your own path of grief or unexpected circumstances, this brings you hope. 💛
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Also, super fun for me--getting to put our amazing community on display in this podcast episode, from Columbus, Ohio to Irvine, CA and all the places in between--thank YOU for helping me carry my grief. You are a true reflection of Jesus.
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#Repost @joniandfriends
• • • • • •
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.

If your life has taken an unexpected turn or you are traveling with grief as a constant companion, listen to the podcast today and be encouraged by Bekah’s journey.

Click the link in our bio to subscribe!
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#Podcast #RareDisease #Loss #Hope #CantStealMyJoy #Disability #DisabilityAwareness #Heartbreak #Grief #RareDiseaseAwareness #Jesus #Encourage #Encouraging #Inspiration #Inspirational

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