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Bekah Bowman

Can't Steal My Joy

Home | Our Story Part 3- Journeying a different story than planned | Yep. There it is. Grace.

Yep. There it is. Grace.

Our Story Part 3- Journeying a different story than planned

Gut wrenching cries wracked my body. I couldn’t hold it in. “You are dreaming,” I told myself. But it didn’t matter because when I woke up, the dream transferred to a very real reality. A reality that told me this dream, or rather, nightmare, was in my future. The one that looked like a life without Titus. I wanted to stop the deep emotion and sorrowful cries, it really hurt to feel so big. But I couldn’t. It had taken over. Danny leaned over me, calling my name over and over. I felt his arms come around me, holding me, telling me it was ok. This is how I began my day today. A day that holds an anniversary I’d rather forget or pretend doesn’t exist, but with everything in me, I can’t forget. I tried to spend the better part of my morning as if all was normal, but tears were near the surface at all times because truth is, I remember. I remember the anxiety I felt the night before this day last year knowing we’d be marching in to the doctor’s office the next morning to hear the results they had discovered. And I remember the shock, grief, and loss that struck us immediately when we heard the word Batten for the first time on April 7th, 2015 at 11:45 in the morning.

Oh… what a year. My calendar year has been changed. No longer does my year start over in January. No, my year becomes complete on April 7th. On the first day we heard the word Batten. All year, I’ve looked back each day and remembered “a year ago today, Titus (fill in the blank)”. So many milestones gained and then lost. This has been the year of loss. The year Batten took over. Soon my “a year ago” comparisons won’t look so drastically different from the present, the now. It breaks my heart. I marvel at the way it is already April 7! How has this nightmare continued for so long? I should’ve woken up a long time ago to find my boys wrestling in the front room. To hear them singing in joyous chorus together. But that cannot be our life. Oh, how have I survived?

The other night I listened to Danny play a video of Titus. His little voice and dinosaur roar pierced my soul. I smiled on the outside, choosing to remember with fondness. On the inside, my soul was bleeding through the pierced hole, crying with pain. What a gift, this video, but what agony and… will I always have to feel that?

I mean really, guys, how have I survived? And more, thrived?

Is it because I’ve turned into a super hero able to rise above all emotions and circumstances- plowing through each day as necessarily as I must? I think we all know this answer… um, No.

Is it because I must have just been made for this sorta thing? This story, these circumstances? The ones that so many use to deem me “mother of all things they themselves could never survive”? I just naturally fit the role? Yeah…. No.

Is it because I must be in denial and stuffing away my feelings and emotions, refusing to face the truth? Yep, you guessed it… No.

I can explain my survival through one word.

GRACE.

Period.

That my superior God looks down at inferior me and chooses me- gives FAVOR to me!

That He allows my heart to open, not close. My eyes to see, not burn. Love to be experienced and felt, not shut out.

That He gifts me laughter, perspective, joy! Not bitterness!

That He holds me in the dark rather than hide from me.

That He allows me to see gifts all around.

In the twinkle of my son’s eye- there it is! A gift!

In the giggle that begins deep in the throat and explodes out, face lifting to the sky (because that’s the proper way to fully laugh with abandon)- there it is! A gift!

In the warm hug that holds me even after I’ve spoken bitter words, tried to drive it away. There it is. A gift.

In the teachers, nurses, and therapists who embrace my boys with love and one-of-a-kind care, giving it all they’ve got. A gift!

In the many Team 4 Titus & Ely events that have popped up over the year. The stories of people changed, loving BIG, allowing God to work through the boys and through others’ generosity. There is is! A gift!

In the calming, centered peace given at my kitchen counter as I sip on a cup of tea and talk to my God. There it is. A gift.

In the encouraging words on cards, scrawled out beautifully, giving us glimpses of authentic love. Yes, a gift.

In the community of love and pledged journeying together – a commitment to do life with us… No matter the cost. There it is. A gift!

In the tender snuggles and endless giggles. Yep, a gift.

The way I can fall apart mentally and still rise brave. A gift.

Yep. There it is. Grace.

It is all a gift of GRACE!

In no way did I, Bekah, do anything majestic or astonishing or particularly breathtaking to deserve acts of such unbelievable grace.

Who does that? Who extends grace like that? We selfish and limited mortals? Do we, on our own, create that kind of power? Of freedom? Of Love?

We could never… not on our own. We are only conveyors of God’s grace.  God’s grace centers me, grounds me. And I don’t want to miss it, this gift of grace. I could fool myself into believing the reason I have His favor is because of how much good I must do. That I’ve earned it. But let me tell you, I can’t even begin to live under that pressure. There is no amount of good deeds I could have done to earn what my God has given me in love, grace, mercy, wisdom, perspective. There is no ability for me to make enough good choices and to be nice, kind or giving enough to change the situation we live in. I cannot redeem this junk, this disease. I can’t. I can’t. But my God can. My God lives in an economy of grace!(Thank you Pastor Steve!) He works in an economy that looks like this: You owe, Bekah. It’s your heartbreak, Bekah. It’s your problem, Bekah. But… I’ll pay. I’ll redeem. I’ll hold you. I’ll stand beside you in the raging current. I’ll listen to you whether you praise my name or curse at me. I’ll be there to celebrate with you. I’ll be there to mourn with you. I’ll pay, Bekah. I’ll pay. 

For those who might think faith is just a part of my life and that perhaps it falls under the extra curricular or extra credit category, let me challenge you for a moment. It’s not just a piece of my life. It’s not a check mark on my to do list. It’s not a back-burner consideration. It’s everything. His grace is what gives me the ability to smile. It’s what keeps me in check when I say something against my fellow human. It’s what causes me to feel, deeply. It’s what gives me strength to keep getting up each day. It’s what gives me bravery and courage to encounter whatever is dealt out. It’s what brings me back to

love

thankfulness

joy.

20160326_103904
Experiencing a wonderful Egg Hunt for kiddos with special needs and their families! A gift!

This gift of grace is for me. And, it’s for you. And, on this difficult anniversary, where I cling to hope and redemption of all this pain, I pray you also feel the love of a good, good Father who loves you and me. I end with the face of my sweet firstborn and the blessing, or life verse, I pray over him every night.

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Titus, may the Lord bless you and protect you. May the Lord smile on you and be gracious to you. May the Lord show you his favor and give you his peace. -Numbers 6:24-26

Thanks for listening,

Bekah

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April 7, 2016 · 7 Comments

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  1. sildamon thabah says

    September 24, 2016 at 9:48 pm

    You bring my hearts to tears.our GOD is an awesome And miracles working GOD.By his stripes we are healed he is still be the same yesterday, today and forever. Praise the LORD. Amen

    Reply
  2. Brandi says

    April 21, 2016 at 4:01 pm

    Grace <3 so unbelievable, so incredible. You're boys are beautiful. <3

    Reply
  3. Kari says

    April 10, 2016 at 9:17 pm

    Thank you for sharing!

    Reply
  4. Dee says

    April 7, 2016 at 9:04 pm

    You bring my heart to tears, but also with Joy, Joy of knowing our God is such an Awesome God. For the Faith you share, for the Joy you share and for the Grace. Grace, Grace wonderful Grace
    You help renew and uplift so many and I feel God has shown Grace to us through you and yours and Danny’s journey.

    Reply
  5. Carma Corriher says

    April 7, 2016 at 5:55 pm

    You have truly touched me.

    Reply
  6. Steve Phillips says

    April 7, 2016 at 4:28 pm

    Yep. Journeying together to do life with you. no matter what. Bekah, you have once again broken, and stirred, my heart and soul.

    Reply
  7. viksters says

    April 7, 2016 at 3:44 pm

    Wow. Our God is truly a God of the impossible! This is so encouraging. Blessings 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.
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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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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!
...
#Podcast #RareDisease #Loss #Hope #CantStealMyJoy #Disability #DisabilityAwareness #Heartbreak #Grief #RareDiseaseAwareness #Jesus #Encourage #Encouraging #Inspiration #Inspirational

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