Episode 24

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Published on:

28th Jun 2024

Differently Wired | Embracing Discomfort in Community With Tracy Upham



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Description

What happens when a community truly embraces neurodiversity and exceptionalities within its midst? Hosts Johan Heinrichs and Wendi Park delve into the heart of inclusivity with guest Tracy Upham, a trauma trainer and foster parent with firsthand experience in parenting children with intellectual disabilities, fetal alcohol spectrum disorder, and autism. Upham shares challenges and insights from her journey, emphasizing the need for flexibility, wisdom, and the church's role in fostering a sense of belonging.

With real-life anecdotes from her small, welcoming church, Tracy illustrates how embracing discomfort and valuing each individual's unique gifts can transform both personal faith and community life. The conversation underscores the impact of inclusivity on spiritual growth, urging listeners to shift their perspectives and celebrate the diverse contributions everyone can offer. Both poignant and motivating, this dialogue encourages Christians to embody gospel truths through compassion and openness.

Time Stamps

[05:06] Modern parenting challenges with intellectual and trauma.

[08:35] Congregation engaging with large school, overcoming challenges.

[12:46] Diverse church embraces all, including those with disabilities.

[15:15] Pressure to fit perfect parenting mold, seeking acceptance.

[17:59] Learning from neurodiverse individuals about misconceptions, discipleship.

[21:35] Encouraging message for parents of children with exceptionalities.

[25:57] Embracing discomfort leads to personal and community growth.

[28:15] Live to please God, transform, offer difference.

[30:37] Encouragement for parents of neurodiverse kids.

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Editing and production by Johan Heinrichs: arkpodcasts.ca

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Transcript
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What does loving your neighbor actually look like? This

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is Journey with Care, where curious Canadians get inspired to

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love others well through real life stories and honest

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conversations.

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Hey, it's Johan. Before we get into this interview, I just wanted to let you

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know that we've had some technical issues with this interview.

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The Internet was cutting out. So there might be parts of this

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interview that feel a little bit choppy, but the content was really

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good. So I encourage you just to look past that and listen to our

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guest's story. Now onto our conversation with Tracy.

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Welcome, fellow sojourners, to another curious episode of

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Journey with Care. I'm on with our co host Wendi

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Park. Hey, everyone. We are in the midst of our series differently wired in

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community, and we have another special guest on today. But before we

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get to that, I wanna remind you that we have another podcast called Journey

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with Prayer. You can find it now on your favorite podcast player

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or get early episodes on our website journey with care dot

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c a slash podcast. You can find it all there. I encourage you to

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subscribe. And, again, make sure you're sharing this series with friends,

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family, church members, people in your small groups. These are such

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important conversations that we believe will bless the body of

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Christ. Yeah. I've heard so many things, Johan, from people that have been

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listening and following along with our differently wired and community

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series that it's easy to share with people, having

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those conversations, hearing from people that have come through these experience,

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that are living in these experiences, and it's an easy way

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to generate conversations, healthy conversations in their

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communities, in their families, in their threads. I've

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been seeing that being shared, which is really lovely,

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and we just want to help people understand

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neurodiversities, disabilities, mental illness. This series

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isn't a clinical, place where we're diagnosing

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people, putting labels, but we're inviting people to share their stories. So

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for those of you who have been following, you will know that we've been talking

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about navigating neurodiversities and exceptionalities within

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the church and community. And how do we do that? How do we really care

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and create inclusivity and belonging for everyone? We've been

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talking about autism, bipolar, ADHD. There's so many

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things there that I know listeners have been

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blessed by, and we are not disappointing

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today because today in studio, we have Tracy

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Upham. She's actually one of our trainers, our trauma trainers on

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inner team coming from the Hamilton area. And so,

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Tracy, welcome to the podcast. Hi. Well, we love

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having our conversations with you, and I'm so excited to share your

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voice and your experience kids

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with

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kids with exceptionalities, living with kids, parenting,

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ministering to people with exceptionalities. Can you tell us a little bit

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about yourself and what ties you into this topic of

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differently wired in community? Sure. For the last about

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13 years, my husband and I have been foster parents. And

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the last 6 or 7 years of that,

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specifically have had kids placed in our home who have had

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significant challenges, intellectual disabilities, fetal

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alcohol spectrum disorder. We've done some relief for kiddos who have autism. And

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so just kind of as our journey has

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progressed, we have kind of

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unintentionally found ourselves in

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this place where we are often caring for kids who have special needs.

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Yeah. It's interesting. We often don't necessarily know what we don't know,

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and yet when we find ourselves in situations, we have to get curious.

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Right? When those those kids came into your life, you

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needed to educate yourself. They were educating you on the things

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you didn't know. You didn't find that in a parenting how to

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book, did you? Definitely not. Definitely not. And I can

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look back now and see the ways that

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I think God has both gifted and prepared

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Keith, my husband, and I for what happens in our

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house. But I don't know that I always felt

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that in the moment that those experiences were

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happening. But, yeah, I I mean, I think as a foster parent,

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even for our kiddos who come into our homes who don't

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necessarily have a diagnosed neurodiversity

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that you could, you know, put a label on, even

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just the experience of attachment disruption

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and and trauma, those already kind of create sort

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of like a a I mean, I kind of talk about how I think all

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kids who are part of the child welfare system probably fit into that

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special needs population because they do need to be

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parented in a different way. They do have experiences Right. That

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have possibly made it so that traditional parenting is not

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going to be effective or going to be as helpful.

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Specifically, the last couple of years, seeing how intellectual

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disabilities or executive functioning challenges in, you know, fetal alcohol

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spectrum or something like that mesh with that

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trauma experience or that attachment disruption can

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be really interesting and can create some

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real complexities. I find that sometimes

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the information that you're getting from a population of,

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you know, parents who are caring for a child who has

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autism, let's say, or Down syndrome or some sort of intellectual disability who

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they have raised since birth and there hasn't been any attachment difficulty.

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Sometimes that advice doesn't quite fit, but then also sometimes some of the

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trauma stuff doesn't quite fit either because not only are they

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experiencing trauma, but they also then have these intellectual

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challenges or these executive functioning challenges that

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can make that part really tricky. And so we're always trying to kind of

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figure out, okay, what's the best way for us to meet these

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kids where they where they are, and who has

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God made them, and how can we look to him

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to kind of figure out, okay. God, how would you have us lead these kids?

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How would you have us love them? How would you have us care for them?

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What does it look like? What's the best thing for them? And that

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has not always been the same. And so there's been a lot of learning to

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to be flexible and a lot of learning to to be flexible and a lot

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of learning to to ask for wisdom. But I do think that we've also, throughout

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the last, you know, 13 years, I think that we have also picked up some

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skills and hopefully are a little bit better at what we do than we were,

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you know, 13 years ago. That's my hope by least. Well, you've said a lot

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of good things there, and and children are often the best

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educators Wendi we listen and we lean in. How do we connect?

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And you raised something interesting, not only the intellectual disabilities

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or or the challenges and the complexities, but the trauma piece,

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it does change the biology and the neurology of the brain. Right?

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And so then how do we work with those wirings if there's there's

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levels of healing that can be found? But I love that you

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bring your experience into our trauma care training,

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and helping people connect well with people that

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are differently wired based on trauma. When something

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triggers them, how do we deescalate the brain so you can have that

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connection? You've had a lot of experience. You also came in with experience

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from a ministry perspective. Right? Through a church ministry,

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pastoral staff role with children. Can you tell me a

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little bit how that has informed some of your perspective

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on neurodiversities, intellectual disabilities within the

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church setting. Yeah. I don't think there's a time in my

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life, at least prior to maybe 10 years old, that I

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haven't been involved in taking care of kids

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or working with kids or whatever. Like, that that's been a given

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from a very, very young age. But, yeah, through university, I moved to

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Hamilton because that's not where I'm from originally, and I worked, at

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the church that we still attend as their children family

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minister. And it is a church that is in kind of a higher

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needs area of the city. We had a lot of

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kiddos who just life was hard. There was a lot

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of of toxic stress, a lot of uncertainty. So

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this the church story that we are at, there is a school

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directly behind it. And so it was becoming really important to the congregation

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that they engage with this school, this, you know, 800

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plus kids, because this is not a small school, it's a very large school.

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How do we engage with this, you know, 800 plus group of kids?

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So very early on, one of the things that we saw was as we started

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to engage with kids, they would show up on Sunday morning,

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but they had no concept of what a Sunday morning church

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experience would look like. And so sometimes, they would bring families with

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them, but sometimes, they would just kind of show up. And so I think that

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our congregation had to kind of learn pretty quickly

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how to be welcoming to disruption,

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how to be okay with explaining to this child in the

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middle of the service, like why we were taking communion

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or why people are raising their hands while they're

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singing or all of these different pieces. And so, I

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mean, we did have a Sunday school program that they would go to for part

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of the time. But still today, our kids start

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their their Sunday with us in the service, and we worship together.

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And so that was kind of an introduction to our church

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to kind of be a little bit to be a little bit okay with

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being maybe uncomfortable with things not looking the way that

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maybe always had looked or people kind of thought that they they looked.

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And there were challenges with that for sure.

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But I look back now, well, almost 20 years

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ago, and I really think that

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those kids kind of broke us in, in a

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lot of ways to being a lot

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more comfortable with taking ourselves less

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seriously, not having this really, like, formalized idea of you need

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to be quiet, and you need to sit in this place, and don't speak. And

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I see that now because now our congregation has such

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an interesting population of

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adults who have, developmental disabilities, or we have a

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young man who has autism that worships

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with us, and they are beautiful. They are sometimes hilarious. You know,

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sometimes they'll make comments or they'll kind of

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shout something out in the middle of service, and it's normally

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fantastic. It's normally the thing that everybody is thinking and nobody wants to

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say. Yeah. And they have been such a blessing

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to us. Well, that is really neat to hear, Tracy,

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because not only have children impacted how you parent and

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interact with children, but it sounds like as your

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church welcomed and created space and colored outside the lines a

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bit in creating space for for children with

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exceptionalities and differences that it has

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taught the church. It has influenced the church in how

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you all operate together, how you function and create space for

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each other. What do you think have been some of

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those key things that have created that safety for children to be

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children, for adults with exceptionalities to

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to just be their whole selves with you. What are some of

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those things that have created that ability

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to be themselves within a a diverse

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congregation? I should say to start that our church is a

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pretty small group. So we're probably about 60

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people maybe on a Sunday morning, and I think that that

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matters in that there's kind of an

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expectation if you're around for

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more than a couple weeks, you are going to know

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several people. Right? Like, it's not the type of place that's huge, and

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so you can show up for a couple weeks without really meeting a lot of

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people. You're gonna meet someone very quickly within

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coming through the door. And if you're there for more than, you know, 1 or

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2 weeks, you're going to meet even more people. And so I think that that's

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part of it is just the the commitment to

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welcoming one another, to touching base with new faces. And because we're small,

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we can see those new faces very, very easily. Yeah. I think for

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a long time, our church has kind of represented

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our neighborhood in that there's a very

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diverse group of people already, so

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a very diverse group in terms of socioeconomic status for

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sure. And that has been decades that that has been the

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case. And so I I think that there's already this sense

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of people from different places that other than the

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church wouldn't really come together, and

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already kind of journeying together and being like, oh, you

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have something to bring to the table. And so I think as that

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has grown to include more recently

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kids and adults who have developmental disabilities or,

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you know, whatever kind of special needs. I think that that has laid

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a good foundation. We also have some really lovely

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parents, and, I mean, we do have some child like childcare

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providers, EAs, teachers who have a really good head on

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their shoulders around kids development, but

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also just, like, how important it is for kids to be able to

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be kids and for kids to be celebrated. And even some of

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our older members who aren't raising children

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anymore, but have this real

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commitment to our kids,

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especially, and wanting them to know Jesus, but

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wanting them to know Jesus in a way that works for them and not re

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like, recognizing that they're not necessarily going to just sit in one

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place quietly and, you know, receive.

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So it's not uncommon in our church to kind of see

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different kids dancing in the aisles or, you know,

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there are kids that are helping do actions for songs or singing songs.

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It's not uncommon for kids to kind of

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come and, like, go throughout even the first part of the

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service while they're together. And so that's kind of just

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created an environment of, okay, this is a place where I can bring my

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kids who might struggle with a sense of, oh, you need to sit

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still and you need to listen and you can't speak and you

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can't ever smile. I don't I don't know. That's probably a

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terrible example of what church looks like anywhere. But I think

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sometimes we get these ideas of, like, the

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perfect Christian kid is this, like, such a

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heavily behaviorist model. And and not only that, but the

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parents too, that we have this perfect image of how a

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good parent raises their children and you all sit still and be a

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Pinterest family down the pew. Right? Where those

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pressures come from, who knows? But I I like what you

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said, though. Like, I think that that rings true for all humanity.

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When I see somebody else bear their whole self in

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front of others and be accepted and welcomed and

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treated with love and dignity, I'm more likely

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to drop my mask and say, you know what? When you ask me

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how am I doing and I say I'm struggling right now, I'm gonna be more

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vulnerable, feel more safe to be my authentic self

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or to share, like, I like to do this quirky thing. You know?

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I believe that we might all come in with different exceptionalities

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or different circumstances. But when we see that emulated,

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when a person with Down syndrome is dancing in the front

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or somebody with FASD is is

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helping with the children, But when I see those things incorporated,

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then I think, well, maybe my children with these exceptionalities

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or myself with these types of conditions can also be

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welcome. And so we can create that belonging without

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all having cookie cutter same circumstances because we're all

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different. Right? Yeah. There's one woman specifically that I'm thinking

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about. I mean, I don't know if she has a specific diagnosis or whatever, but

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I know there's definitely some sort of, I don't know if it's, like,

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a mild intellectual disability or or what. And she will every

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week, she will offer you a mint, and she will ask you, like, how are

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you doing? And she she does. She wants a real answer,

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and she will immediately ask if she can pray for you.

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And then she will remind you of the things that are true about

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God. And so she will give you a hug, and she will tell you God

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loves you. God is with you. You need to trust him. Like,

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all of these things that sounds like potentially

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simple things because I make Christianity really

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complicated in my head. So, Tracy, how

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have these experiences with this woman that has

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a woman that has blessed you, with your children,

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the the people that you have been working with in your congregation in

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a pastoral role. But now as a congregation member coming with your

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family, how has the how have

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these experiences impacted your own faith and

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understanding of God? You you've mentioned that it simplified

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your theology in in some ways of of not making

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it so complicated. What other ways have you been

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impacted? Yeah. God has definitely used the

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example of both adults and kiddos who

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maybe have different, neurodiversities or

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special needs to teach me a lot about places

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where I was believing things that weren't true. Or even

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if I said out loud, oh, yeah. Like, I believe that God

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loves me and that God, isn't waiting for me to, like, have

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everything figured out. But the way that I was living was still very

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much a, oh, I need to have everything figured out. And so especially

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so we just recently, adopted 2 of the

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kiddos that we had been fostering. And so they lived with us for years,

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but they were just placed with us on adoption in March. And

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part of the last several years of

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just getting to know them and and love them, and especially as we kind

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of started to think about adoption and see them

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as part of our family, thinking about, okay, what does

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it look like to disciple these kiddos

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who, you know, don't necessarily always

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look like what comes to my mind maybe.

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And and I'm not saying that that's a good picture. I'm not saying that,

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yeah, I think that that is a poor picture that I have, and that's

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not not healthy. But, you know, my kiddos

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really struggle with impulse control. They really struggle with executive functioning. They

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struggle with emotional regulation. Mhmm. Sometimes when they get mad, the things that

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come out of their mouth are pretty ugly. Sometimes when I get mad, the things

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that come out of my mouth are pretty ugly, and that's not something that

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we normally talk about. And so having to sit and say,

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okay. God, if I believe that you

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made these kiddos, And, yeah, some things

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happened that were not in your original plan for the

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world, but I also have to believe that at this

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point in my kids' lives, this is how you've created

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them. And so what what does it mean for them to love and to

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follow you when they might struggle with all

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sorts of different behaviors as kiddos? But even as adults, like, looking for like, they're

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at risk for a lot of things that, you know,

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from your typical, like, Sunday school ideas are

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not what a Christian adult looks like. And that

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was challenging for me. But I think that God has used that

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to strip away all of the sense of presenting this

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this religious self and just saying, like, it is it is not about that. Like,

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it is about loving god. And and I see that in my

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kids. Even now, you know, they're 8 and they're 10. But, man, my 8 year

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old, she loves Jesus. And, yeah, like, there are

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things that she struggles with, and there's things where she'll say, oh,

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mommy, it's hard to follow Jesus. It

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sure is, girl. Amen. Amen. But, man,

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like, she she loves Jesus, and Yeah. And I can see

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it. And so I think that that has been such

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a gift, such a necessary work in me because God has used that

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stripping away to then say, okay, Trace. I'm not all that

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impressed or concerned. Like, I, you know, you've got all this stuff that you're trying

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to prove and you're doing and whatever and, like, cool. Yeah. That's

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not what it's about. And so would you let

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me love you? And would you, you know, take a breath for

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a minute? Yeah. That has been the biggest

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gift. It has not been comfortable, but it has

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been so good and such a shift

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in my understanding of Jesus. Well, I think that's so encouraging,

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Tracy, because I think that will bring bring a lot of,

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encouragement to other parents and other people, maybe

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even living with exceptionalities. And even

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when we love Jesus and your daughter

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expressing her love for Jesus, but that doesn't take

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away some of the intellectual disabilities

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or if there's FASD involved. There is changes within the

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brain, things that have happened or things that are part of their brain

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that doesn't take away those challenges.

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And I think there's something there that we need to to

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pay attention to in what you just said that though

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we struggle in this world, it doesn't take

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away from your daughter's value when

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impulse control is one of those things or outbursts or or

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or different challenges that she's facing. She can love Jesus and

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still be challenged there physiologically,

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and god doesn't see her as less than because she

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can't sit still. He says, let the children come and don't

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hinder, and you have been navigating. You said it's not easy,

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right, to not let those things hinder her from

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loving Jesus and feeling welcomed and included. I think

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there's there's a lot that we can learn in the church. And how have you

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navigated discomfort? You could have chosen

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not to raise these children. You could have chosen not to go forward with

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permanency and adoption. You could have chosen to go to a

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different church where it's neat and tidy and perfect, quote,

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unquote. Why have you chosen that difficult path?

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And help us understand what navigating

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difficulty looks like to be faithful. Yeah. I think

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it's been a a struggle for me because somewhere

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along the line, I picked up an idea

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that life should be relatively

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easy, and that things that were supposed to happen

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would, like, kind of happen, you know, naturally or without a

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lot of of effort. And I I don't really know where that necessarily

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comes from, but suffering and discomfort

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have been the main places where Jesus has met me. And so

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it kind of very quickly came to the point of like,

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well, this is uncomfortable, and I don't really like it.

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But I also cannot argue that these are the places where Jesus is

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showing up in my life. And, I mean, there have been times where I'm like,

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I don't wanna do this. I'm done. Like, I wanna cut myself

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off completely from all things. But I

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also am so aware that that would be not what

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Jesus has for me at all. And so I think

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a lot of the last 5 years, especially, have been

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learning again and again and again that

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life is not supposed to be easy, and that just because something's hard

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doesn't mean that it's bad. That often, the things that are

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most important to God require

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yeah. Like, intentionality, I guess I'll say, because that's the one that's doing

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the work, but we need to be intentional. And so I think that

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one of the things that, as a society, we're not necessarily great at is staying

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in those places of uncomfort or discomfort and of suffering. So, I

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mean, I think community has been a huge part of that. Like, we are very,

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very blessed to have, other Christian

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families around us who are living lives that look

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different than what they anticipated they would. I think that

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there has been a journey of having to grieve some of the

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things that I thought life would look like. And in that

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grief, God has allowed me to be a

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little bit more comfortable Johan in in some of those places where

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before I really wasn't. And I think just in the last

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couple of years, in my own personal life, looking at some spiritual

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disciplines that really set me in intentionally at looking at, okay,

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what is God doing? What has God done in the past? What has God done,

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you know, last week, and how am I seeing him at work? I think

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that those things have allowed me to stay in the discomfort

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because there is just no denying that it is the

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place which where Jesus is.

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Well and I can testify, Tracy, that I see Christ in

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you and you choosing discomfort, you choosing

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to work across your own comfort lines

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has made you into a better, more Jesus

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like person. And now not only are you

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being willing to be discomforted, you are being driven

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to into places that often churches find

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discomforting, and you are training up churches to enter into the

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people's distress in a in honoring and dignifying way.

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And I love that that not only God has been doing that in

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you and making you a wonderful person. I love having coffee with you when

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I Wendi I'm down in Ontario and just feeling

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that from you. But you are now in introducing that

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into churches, into camps, into ministries so that they

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too can enter in with a few skills and tools that you have picked up

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and our team has picked up along the way, and you are blessing

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many other people. So, Tracy, I was wondering if you

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could invite us, invite our listeners, invite

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me into what that process could look like to enter into

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discomfort. What can I be learning? Why should I do it?

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Tell me a little bit more about what we can be learning

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by being inclusive and embracing differences

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and getting out of our comfort. Well, I think one of the lessons

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that I kind of already, you know, alluded to was that Jesus

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is in the hard places. And so, yeah,

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I think being uncomfortable is often

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a part of the package. And

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so I think the church in North America

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kind of has picked up these different ideas that I'm not sure

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are actually kind of gospel truths.

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They're kind of more cultural. But we we live in a world that

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is so dressed about

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independence, about personal success, about

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doing everything and having everything and being

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everything. And I think the lesson is

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that we are called to be a community. We are not called to be

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individuals doing our own things on our own strength. Like, that was never

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the purpose. But whatever it is that you do,

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do it. Do it to please God and do it, to bring

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glory to him. And so I think that it gets us outside of kind of

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our, like, North American culture of this is the way life is

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supposed to look. So I think that that gives us an

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opportunity to live differently and to to be

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uncomfortable, for sure. Those are the places that I've met Jesus the most.

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And so I think that is the thing for the church, to be transformed by

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the Holy Spirit, to offer a different gospel to

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our culture as well because, you know, I don't think that those

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things are necessarily healthy for our culture all the time. And so what does

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the church have to offer to the world around us? A

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lot of what we have to offer are, are actually some of those lessons that

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I've been learning from my kids and from the adults at church

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who, you know, from the world's perspective, they don't really have anything

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to offer. Like they're kind of they they've kind of been shoved into a place

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of, well, they're receiving care from someone somewhere,

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but they're not expected to bring anything to the table. And I would say that

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the exact opposite is true. They bring so much to the table, and I've been

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so blessed, and so challenged in

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how I live out my own faith by their examples.

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Yeah. That is so powerful, Tracy. Yeah. And don't

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we all theologically, we should know this. But

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are we practicing? Don't we all need each other and need

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God To to learn from people who might

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be considered church projects or people to be cared

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for, but to be actually receiving lessons from

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God through individuals who understand their

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need for community, who want to contribute and be part of

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it, not based on intellectuality or or all these things that

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we might esteem in the world that kinda qualifies us in.

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But that we are all made in the image of God. We are all needing

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community, and God has value and

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purpose and plans for each one of us lived out in

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community. Tracy, this has been a wonderful conversation, and I'm so grateful that

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you were able to share your experiences, how God has

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been challenging you, and I I believe it's a challenge for each one of us.

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Is there any last comment that you would like to to put out there,

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before we conclude this episode? Yeah. I think I'd love to go in a

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slightly different direction, but speak to

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people who are parenting kiddos who have neurodiversities,

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because sometimes that can be a really

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challenging and a really lonely journey. And so I think I would

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just want to encourage them to keep

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looking for places where their family can be

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celebrated, to know that their kiddos are, are made in

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the image of God and to know that, man,

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hard stuff is often the places where Jesus meets

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us, that we can't do things on our own strength, but that

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God gives us the Holy Spirit. And yeah, to

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maybe be free to take off some of

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the mental baggage of what our kids should be able to do or

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what our kids should look like and to, to really

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see if we can look for,

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God, what is it that you are teaching me through these kids?

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Or, you know, what gift have you given them

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for the church or for our family or for

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our community? Because I I know that that can be

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a really hard road to to walk. That is so good. Thank

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you so much, Tracy, for coming on. Encouragement for our listeners,

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we've heard some great feedback on this series so far, and I encourage

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you to share it with others. Share it in your churches. Share

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it with your friends, small groups. These are important discussions

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that we really believe are important for the church

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to really rally around, and they make for great discussions with your friends and

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family around the table. We still have some more interviews for you, so

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keep following along with us. Thank you

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for joining another conversation on Journey with Care, where we

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inspire curious Canadians on their path of faith and living life

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with purpose in community. Journey with Care is an initiative of

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Care Impact, a Canadian charity dedicated to connecting and equipping

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the whole church to journey well in community. You can visit their

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website at careimpact. Ca, or visit journeywithcare. Ca to

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get more information on weekly episodes, Journey With and

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details about our upcoming events and meetups. You can also leave

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us a message, share your thoughts, and connect with like minded

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individuals who are on their own journeys of faith and purpose.

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Thank you for sharing this podcast and helping these stories reach the community.

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Together, we can explore ways to journey in a good way. And

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always remember to stay curious.

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About the Podcast

Journey With Care
Equipping communities and the Church to love neighbours well
The conversations that inspire curious Canadians on their journey of faith and living life on purpose in community. Join us for thought-provoking conversations that inspire you to live a life of purpose and connect with like-minded individuals. Discover actionable insights, practical tools, and inspiring stories from leaders who are shaping the future of faith, business, and community. Together, let's disrupt the status quo and create a world where faith and entrepreneurship intersect. Become part of a community that is passionate about making a difference.
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