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Can't Steal My Joy

Our Story Part 2- Receiving the diagnosis

June 26, 2015

This… this, now

May 18, 2015

A new set of eyes

April 27, 2015

Community or bust

April 10, 2015

From the broken

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!!
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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.
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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.
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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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#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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