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Bekah Bowman

Can't Steal My Joy

Privacy Policy

Can’t Steal My Joy Privacy Policy

This Privacy Policy describes how your personal information is collected, used, and shared when you visit or make a purchase from https://bekahbowman.com (the “Site”).

PERSONAL INFORMATION WE COLLECT

When you visit the Site, we automatically collect certain information about your device, including information about your web browser, IP address, time zone, and some of the cookies that are installed on your device. Additionally, as you browse the Site, we collect information about the individual web pages or products that you view, what websites or search terms referred you to the Site, and information about how you interact with the Site. We refer to this automatically-collected information as “Device Information.”

We collect Device Information using the following technologies:

  • “Cookies” are data files that are placed on your device or computer and often include an anonymous unique identifier. For more information about cookies, and how to disable cookies, visit https://www.allaboutcookies.org.
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  • “Web beacons,” “tags,” and “pixels” are electronic files used to record information about how you browse the Site.

Additionally when you make a purchase or attempt to make a purchase through the Site, we collect certain information from you, including your name, billing address, shipping address, payment information (including credit card numbers, email address, and phone number. We refer to this information as “Order Information.”

Additionally, when you sign up for the newsletter, we collect the information received from you on our mailing lists. These are not sold or given to any other parties and used only to send you emails you have signed up for. You can easily unsubscribe via the link given at the bottom of the newsletter should you want to discontinue receiving those. Your information is kept in our system unless you personally request it be deleted permanently, but will be marked inactive upon unsubscribing.

When we talk about “Personal Information” in this Privacy Policy, we are talking both about Device Information and Order Information.

HOW DO WE USE YOUR PERSONAL INFORMATION?

We use the Order Information that we collect generally to fulfill any orders placed through the Site (including processing your payment information, arranging for shipping, and providing you with invoices and/or order confirmations). Additionally, we use this Order Information to:
Communicate with you;
Screen our orders for potential risk or fraud; and
When in line with the preferences you have shared with us, provide you with information or advertising relating to our products or services.

We use the Device Information that we collect to help us screen for potential risk and fraud (in particular, your IP address), and more generally to improve and optimize our Site (for example, by generating analytics about how our customers browse and interact with the Site, and to assess the success of our marketing and advertising campaigns).

SHARING YOUR PERSONAL INFORMATION

We share your Personal Information with third parties to help us use your Personal Information, as described above. For example, we also use Google Analytics to help us understand how our customers use the Site–you can read more about how Google uses your Personal Information here: https://www.google.com/intl/en/policies/privacy/. You can also opt-out of Google Analytics here: https://tools.google.com/dlpage/gaoptout.

Finally, we may also share your Personal Information to comply with applicable laws and regulations, to respond to a subpoena, search warrant or other lawful request for information we receive, or to otherwise protect our rights.

DO NOT TRACK
Please note that we do not alter our Site’s data collection and use practices when we see a Do Not Track signal from your browser.

YOUR RIGHTS
If you are a European resident, you have the right to access personal information we hold about you and to ask that your personal information be corrected, updated, or deleted. If you would like to exercise this right, please contact us through the contact information below.

Additionally, if you are a European resident we note that we are processing your information in order to fulfill contracts we might have with you (for example if you make an order through the Site), or otherwise to pursue our legitimate business interests listed above. Additionally, please note that your information will be transferred outside of Europe, including to Canada and the United States.

DATA RETENTION
When you place an order through the Site, we will maintain your Order Information for our records unless and until you ask us to delete this information.

CHANGES
We may update this privacy policy from time to time in order to reflect, for example, changes to our practices or for other operational, legal or regulatory reasons.

CONTACT US
For more information about our privacy practices, if you have questions, or if you would like to make a complaint, please contact us by e-mail at [email protected] or by mail using the details provided below:

Last Modified: October 4, 2019

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 am constantly in awe of the invitation we are given to pick up a pencil and write stories into these liminal spaces. We are invited to script our small little stories to intersect with the big God story of love and redemption, participating in the inbreaking of God's Kingdom right here, right now in this liminal space.
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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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He gives me a soft smile as I finish our prayer.
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I love his participation, his own unique way of expression in prayer. I love his heart and pleasures in simple things. And I know, without a doubt, that little one-word prayer of gratitude reached right to the heart of God.
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#cantstealmyjoy #adayinthelifeofEly #disabilityawareness #differentlyabled #differentnotless #specialneedsmom #rarediseasefamily #Godsbeloved #cln2 #childlikewonder #prayersofachild #childlikefaith
Wrapping up infusion 111 over here right now. This Wrapping up infusion 111 over here right now. This kid got in some music therapy today!
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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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#musictherapy #joyfulnoise #cantstealmyjoy #adayinthelifeofEly #team4titusandely #infusion #rareisbeautiful #differentlyabled #differentnotless #cln2 #brineura #miracleshappeneveryday
Happy New Year, everyone! . We have words for 2020 Happy New Year, everyone!
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We have words for 2020, don't we? But I've got words for a lot of years these past few and I've learned that there are also always beautiful gifts to behold.
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So, I'm grateful for the disruption, the re-evaluation, the simplification, the re-prioritization.
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I'm thankful for home projects, home offices, home-grown food, home therapy, home school, home church.
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I'm thankful for new passions, new learnings, new books, new friends, new traditions, new yard, new countertops, new adventures.
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I walk into 2021 no fool. (well maybe little bit of one.) I've been saying this for years and I'll say it again. I have no idea what 2021 holds for us, but I guess this joy-seeker (and finder) can't help but feel hopeful anticipation. Here's to the next leg of the journey. 💛
As we I pulled up for our last infusion of 2020 an As we I pulled up for our last infusion of 2020 and Ely's 110th infusion total so far, I was filled with an assurance of hope.
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I can't often put into words what its like to live with such heavy loss at the expense of batten disease, and also live with hope and gratitude in the face of batten disease.
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(That's right- in yo face, batten!) Ah-hem. Sorry couldn't help myself.
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On the heals of grief comes hope. And on the heals of hope comes grief. It's complicated.
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Somehow hope keeps haunting me though. In the middle of this Christmas season, as grief wells up, the "magic" of the season feels absent,  there is something that just won't be put to rest, won't go away, won't stop softly tapping me on the shoulder and reminding me of Jesus's presence... His victory. Its hope.
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#cantstealmyjoy #adayinthelifeofEly #victoryinjesus #holidaygrief #joyfulliving #joyandpain #gratitude #rarediseasefamily #specialneedsmom #missingbig #adventuresinheaven #team4titusandely #cln2 #battendisease #biomarin #raretreatment #infusionday
I remember the first time we experienced isolation I remember the first time we experienced isolation and rejection at the hands of a faith community. On the other hand, I also could sit here for a week straight and recount story after story of our family being brought to the centerfold of our faith community.
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Thankfully, the latter has been the majority of our experience. But I can't say the same for far too many individuals and families who live with disabilities.
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I remember the moment God began kindling in my heart a quiet mission. A mission to help families with disabilities and faith communities come together. To serve together. To journey life with one another. Each side just needs some help communicating and educating. We don't know what we don't know. God showed me I've got a foot on either side of that gap and with His leading, I could perhaps help make that gap a little bit smaller.
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As this mission has grown to a blaze in my heart, I enrolled in the Beyond Suffering Disability Ministry Certification course through @joniandfriends .
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Nov 22 I handed in my last assignment, completing the course. All throughout those 5 months, I cried, identified with so much, and I learned way more than I knew. I'm so grateful, and I look forward to what might be next.
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#disabilityministry #disabilityawareness #disabilityministrycoach #lifewithoutlack #cantstealmyjoy #roomatthetable #roomformore #indispensABLE #specialneedsmom #rarediseasefamily #joniandfriends #bridgingthegap #beavoice

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