Disability + Family: What Is Good? What Is Hard? with Renee Dollenmayer

E20—Does your child struggle to understand who they are in a world that sees disability as a deficit? Renee Dollenmayer, founder of Even If Ministries, shares how living with cerebral palsy shapes her joy, sorrow, and purpose—and why every person with a disability needs to know their presence matters. 

00:00 Introduction to Renee's Story and Disability
03:15 Joy and Sorrow in the Context of Disability
05:56 Creating Space for Lament and Joy
11:49 Disability and Identity
19:50 Loving and Supporting People with Disabilities
22:23 Practical Next Steps

MENTIONED IN THIS EPISODE:

• Even If Ministries

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WATCH this conversation on YouTube: Amy Julia Becker on YouTube

SUBSCRIBE to Amy Julia's Substack: amyjuliabecker.substack.com

JOIN the conversation on Instagram: @amyjuliabecker

LISTEN to more episodes: amyjuliabecker.com/shows/

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ABOUT OUR GUEST:

Renee is a speaker, coach, and founder and visionary of Even If Ministries. Renee was diagnosed with Cerebral Palsy at the age of two and has experienced the joy and sorrow of disability. She has a passion to see the disabled transformed by the power of the Gospel. She believes God allowed disability for His glory and her good. Renee has a passion for sharing that suffering is never the end of the story and helping individuals find purpose and freedom in hardship. Furthermore, she finds joy in coming alongside church leaders to make their churches and communities more accessible.

Instagram and Facebook: @weareevenif
https://www.weareevenif.com/

https://www.reneedollenmayer.com/
Instagram: @reneedollenmayer
Facebook: renee.dollenmayer

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Take the Next Step is produced in partnership with Hope Heals Camp. Hope Heals creates sacred spaces of belonging and belovedness for families affected by disabilities to experience sustaining hope in the context of inclusive, intentional, inter-ability communities. Find out more about our resources, gatherings, and inter-ability communities at hopeheals.com. Follow on Instagram: @hopeheals and @hopeheals.camp

Transcript

Note: This transcript is autogenerated and does contain errors. Please check the corresponding audio before quoting in print.

Amy Julia Becker (00:06)
I'm Amy Julia Becker and this is Take the Next Step, a podcast for families experiencing disability. We've teamed up with our friends at Hope Heals to bring you weekly conversations with fellow parents, therapists, and disability advocates about practical ways to cultivate a thriving future for the whole family. Here at Take the Next Step, we see your family as a gift to our society and to your local community. Your family matters, your child matters.

We need you among us. Today I am talking with Renee Dolanmeyer. Renee is a speaker, coach. She's also the founder and the visionary of Even If Ministries. You'll hear all about Even If in our conversation, but I'll give you a little background. Renee was diagnosed with cerebral palsy at the age of two. She has experienced the joy and the sorrow of disability. You'll get to hear about how she's navigated these emotions.

how she's discovered a sense of calling and purpose, and why she cares so much that people with disabilities know that their presence matters. I really enjoyed talking to Renee and it's a perfect conversation as we head into Holy Week together.

Renee, it is so wonderful to have you here with us today.

Renee Dollenmayer (01:25)
It is such a joy. Thank you so much.

Amy Julia Becker (01:29)
Well, I want to give our listeners a sense of your story as it relates to disability in particular. So can we start by just learning a little bit about you?

Renee Dollenmayer (01:37)
Yeah, great question. So I was born at about 28 weeks. I'm a triplet, which is super, super fun. And so that caused me to be premature from birth, which allowed spastic quadriplegic cerebral palsy in my life. And so was raised very much in a family where my parents wanted me to be as normal as possible, right? And keep up with my siblings. I have an older sister as well.

But I think growing up I had a lot of questions of like, what is disability? What does this look like for my future? Because my parents had never, nobody gives you a guidebook of how to raise a child with a disability. And I think also having three other siblings growing up, that was hard for my parents to kind of figure out, how do we balance this? by giving Renee a good future while also pushing her, while also

recognizing that she's different from her siblings. so I think I really had a lot of those questions as well growing up.

Amy Julia Becker (02:43)
Yeah, that makes a lot of sense. And especially just the complexities. As you said, we use this word disability. And for any parent out there, the experience from one family to another, from one diagnosis to the other, the experience of having a disability from birth versus an acquired one. I mean, there's so many different nuances and just differences. ⁓ And yet at the same time, I think some of that experience of

I don't really know what to do and I don't really know how to feel is fairly common for many of us as parents. ⁓ And within that, think one of the things I've just, you've written and spoken about experiencing both joy and sorrow related specifically to disability. So I'm wondering if you could just talk a little bit about both the joy and the sorrow that you've experienced and how you think about that.

Renee Dollenmayer (03:31)
Yeah, absolutely. So I think we can look at it from a multitude of lenses, but I think in church culture today, in Christian culture, we're often told like, ⁓ because you have Jesus and the hope of Jesus, ⁓ you need to just carry joy all the time because he died for you and there's hope for your future. And the word says, and often Jeremiah 29 and 11 is quoted as like,

There's a hope and a future. And I think sometimes we take, for example, that verse out of context. And so people often look at my life and they say, Renee, you're the most joyful person I've ever met. Like you are so full of life, so full of joy. But what people don't often realize is with all that joy, there's also a lot of sorrow. And I think up until a few years ago, parents with a child with disability

We're told like ⁓ you'll make it through like once you get through this rough patch like it's all joy from there when Reality this tension of a broken world is constantly Joy and sorrow I can be having the best day ever right and doing the most amazing thing and still acknowledge that the world is broken Still acknowledge that there's injustices still acknowledge that this world was not built for people with disabilities in mind while also saying

I have the hope of Christ and in a way I'm grateful for my disability. So I think all throughout my life, kind of going through those stages, there's always been this gratitude and lament of Lord, I'm learning so much through this. I'm being shaped in the woman I am today through this while also acknowledging as Catherine says, all is not well in the world. And there's a lot of hurt and a lot of brokenness.

but also carrying a deep rooted joy that is beyond circumstances. And I also think you can live a joyful and thriving life in the framework of disability. And we often like are scared of that almost and kind of just stay in a little box. But I do think God is calling his image bearers like out of that box and to really embrace the fullness in which they were created.

Amy Julia Becker (05:55)
Do you have any thoughts on how parents ⁓ might be able to nurture? I'm thinking about actually all of the things you said, right? To like nurture the joy and the gratitude, but on the flip side of that, like making space for lament and for an acknowledgement of brokenness and for the sorrow. So, I mean, I'd love to hear you speak about both of those things, but kind of from a, yeah, from a parental perspective.

Renee Dollenmayer (06:20)
Yeah, I think it is so important for parents to not only create space for their child with disability or siblings who are affected, but also creating space for themselves of having regular moments in your routine, in your everyday life to lament and to journal and to process. I think we've done a really good job in today's social media culture of almost creating like these

places of support, which don't get me wrong, I think is amazing, like, praise God. But I think individually, we don't always know how to lament and how to, we do a lot of the comparison game, whether you're the person with a disability or you're a parent, because we're just surrounded by social media constantly of like, well, this is how this parent is celebrating their child with disability. And you almost try to like muster up that, that courage, right?

but what it really looks like is literally creating rhythms in your life and practices of we're gonna lament together as parents, but then we're also going to invite our children into this lament. Because I very much grew up in an environment, I think it was just the time I was raised, like the time period, but of like, oh, don't be sad. Like don't.

don't be sad about this. Like Renee, you're doing great. You're gonna kind of that overcomer like, we're gonna overcome this. But sometimes like when a place is not accessible or your child isn't meeting maybe a benchmark that you would like them to meet, like it's sad. And so creating space not only for you to grieve but like inviting your family into that. So I would say my biggest piece of like encouragement or advice in that is like giving yourself

making that a regular rhythm of like celebration and sorrow together.

Amy Julia Becker (08:17)
And what for you right now do you have specific practices that bring you back to both lament and also joy.

Renee Dollenmayer (08:27)
Yeah, for me, I think it's prayer. And if you just look at the Psalms, right, you see David go through this like one minute he is like in major lament like of Lord, how long? But then it goes into but I praise you because I know who you are. And so I honestly think that's my daily practice. So by every day when I get up, I

Personally, I'm affected by physical disability. And so when I wake up, I can feel it in my body. So it takes going to the Lord every day and saying, Lord, this is really hard. And also, like, how do you want to use me today? So I think in every family context and every diagnosis, it's going to look different. I wish I could say like that framework is going to work for everyone. But for me personally, I think it's

keeping my eyes on him while also just creating space for gratitude, creating daily space for sorrow, and then creating daily space for joy.

Amy Julia Becker (09:32)
One of the things I have found as a family is like, you know, it's really easy for us to share the triumphs, right? Like the things that went well in our day. ⁓ And it but it's been a really good practice as a family, even around the dinner table, just to say, and we use different language. Like, I don't think honestly, if I said to my kids, what do you lament today? They all would be like, what are you talking about?

But like what was challenging for you today or it might be different questions whether it's like what's a time when you have felt ashamed or alone or Sad or what was hard, you know those types of questions even just Normalizing those as a part of the human experience that we all have might make space for exactly what you're talking about and certainly I love your point that like the Psalms give

anyone who's a Christian or praying from the Bible, anyone in that position has great permission to say it is not supposed to be like this. And that I think should be really encouraging.

Renee Dollenmayer (10:31)
Yeah, and what surprises me so much about our culture today, and I've just been off of social media in this Lent season, is we don't know how to often answer the question unless you're like in the Hope Heal space or in the disability space and have been kind of coached through this. We don't know as a human how to answer the question of what is hard. I ask that question to so many people who are young adults.

who maybe have not experienced a lot of hard, hard things in their life. We often don't know how to answer that question. So I honestly think the best thing you can do for your child, you're just listening to this and you're like, even just believing the lie right now, but like you're a bad parent and you're not doing enough, first off, that is such a lie. But I think really where it starts is asking, like you said, around the dinner table.

what is hard today. think that changes the trajectory of our, it rewires our emotional state while also rewiring maybe some false theology that we've believed. It rewires how we view other people, like it truly is a game changer.

Amy Julia Becker (11:50)
I really appreciate that so much. And I wanted to hone in a little bit just on your position as both a woman of faith and a leader out of that, just knowing that you have now for six years now had a weekly Bible study with other women, that right? Yeah. So I'd love to hear a little bit about the origins there, but also just what you've learned in the midst of that Bible study and specifically what these women with disabilities need to know about themselves and about God. So that's kind of my big picture question about that.

Renee Dollenmayer (12:19)
So good, yeah. So even if ministries, I don't wanna say it started by accident because God knew what he was doing all along, but it was in the height of the pandemic. And I really started to take my face seriously in the pandemic. I kind of realized I was living like a double life. I didn't even know who I was, if I'm gonna be completely honest with you. I had a really hard time wrestling. I would have said, yeah, I have a disability, but.

I almost let it consume me to the point of like, God, I just thought that like all the social workers in my life, all the physical therapists, everybody was telling me how I'm supposed to be, what my future is gonna look like, what the path forward is for me, that I'm gonna work as a caseworker ⁓ and help other people with disabilities. Like it was very like, Renee, you'd be good at that. So I feel like my...

my path from a very young age was kind of mapped out for me by well-intending people. yeah, so during the pandemic, I started really diving deep into my faith. I would sit in my rainbow all day and watch sermons and I started to just ask the Lord, I was like, Lord, help me to make sense of my identity. Help me to be like a confident woman, like show me who I am.

And he really just met me in those spaces. And then I started discovering texts in scripture, like John 9 and all of those things. And I grew up in a Catholic family. so I knew about faith, but I always thought that like disability was a mistake in my story or like ⁓ that it needed to be fixed. if I produced more, if I did more,

then I'd be seen as a valuable member of society. And so as I was diving deep into these texts and scripture, it kind of flipped everything on its head. I was like, whoa, whoa, whoa, what have I been believing about myself, about God, about others? So one day I was just in my bathroom and I went to Wright State University, which is a fairly accessible college with a lot of students with disabilities. I was like,

if I felt lonely during this pandemic, if I felt lonely in my life, if I've questioned God in my life, how many other people are dealing with the same thing? And so was like, I'm just gonna start a Bible study with some women I know, I knew like five girls at the time. And we just started meeting on Zoom during the pandemic and all of a sudden, I kept hearing the phrase, like Renee, this has changed my life.

Renee, didn't know another human could understand me on this level. feel so seen. I feel so seen by the other people here, but I also feel seen by God for the very first time. And so there was something in me that lit my soul. I don't even know how to describe it. Like I became, I became alive. I was like, ⁓ wait, there's like hundreds of women and thousands and millions all over the world. There's 1.3 billion people with disability.

cognitive and physical around the world. Like, are we doing here just like creating inclusive ministries in a local church? Like, yes, that can be great too, but we need people. We need people who can walk alongside us. And so even if ministries now serves women all over the world and we still do our ⁓ Monday gather every week and ⁓ people with disabilities are the most unchurched people group.

that there is and I know you most likely know that just with Penny and raising her and your guys experience as well. But yeah, it's really turned into this place where people are saying me too. And I got a message last night actually from this woman who just joined us a few weeks ago. She said, I've never felt so seen in my adult life because you guys are wrestling and walking through the same things that I am. So really.

My heart with Even If Ministries and the vision for Even If Ministries moving forward for years and years to come is we will always have our niche of like physical disabilities and chronic illness. But my vision is that every single person with a disability, male or female, whatever the diagnosis is, that they would know that they are secure in Christ. That

Amy Julia Becker (16:36)
Yeah.

Renee Dollenmayer (16:54)
Their diagnosis is a very big part of them and they can celebrate that, but it doesn't have to be their main identity. And that verse that we often use out of context is that like God has plans and a hope and a future for you. It can be, even if it's not what we thought it would look like, we can adapt to it. And I just think of even, yeah, the work that you do in imagining

a good future for people with disabilities. We have to kind of scale back and say, who is this individual? This individual is an image bearer of God. Okay, let's pull out their gifts. Let's pull out what they can bring to the table instead of focusing on like where the deficits are. And so it's been like the absolute joy of my life to see people's identities just completely transform.

I think the disability community, one of our just struggles is, is the biggest lie is believing that they don't have a purpose or believing that they are a burden to society. And you know why that has been infused in somebody with disability? Because they've been told by the world that they're too much or that their needs are too much. And so my mission with my life is like to debunk that and be like, no, come sit at the table.

You bring value here and all of our value is not based on what we produce, it's in our identity as daughters and sons of the king.

Amy Julia Becker (18:29)
And I think within that, even just exactly what you're saying, that idea of being created, yes, in the image of God and before you've done anything right or wrong and no matter what your body or mind can do, you are good, you are loved, like that's awesome. And yet also to back like you are created with a purpose that God actually has something in mind for you as you.

And I love what you were saying there, just that I think sometimes in disability spaces, we talk about inclusion, we talk about belonging. I love those ideas. But I also want to talk about mattering, that it's not just like we are willing to have you here or even like grateful for your presence, but like we need you, like who you are.

makes us who we are meant to be. And we need your gifts and we also need your needs. Like we need each other. So anyway, I just really appreciate everything you just said, because I think it there's a power to speaking that truth, as you've already said, that there is the power that brought you alive and the power that you are now bringing into other women's and hopefully someday men's lives as well. So thank you so much for that. I want to we're coming to the end of our time, but I want to ask you one more question, which is

just about community. What is something you wish that people would do, not just understand, but do when it comes to loving and supporting people with disabilities?

Renee Dollenmayer (19:59)
Such a great question, Amy Julia. the first thing that popped into my mind is, I think we make it way too complicated. I think we make it way too complicated. We get freaked out. We start to get nervous. We're worried to ask. We're worried to maybe interact with somebody who grew up different than us. But the best thing you can often do is ask.

It's going to take some more digging and discovering, but that's the beauty of community. When you're in friendship and relationship with somebody with a disability, you're in friendship and relationship with someone who's human. And I've really been looking a lot at in scripture recently, the giving and receiving of care. And I think so often our world, our culture,

inspiration porn as people call it, the way disability is portrayed to the world is like, ⁓ the friend who's caring for the person with the disability, what a hero they are. So I think if we just sat down with people and said like, hey, what's your story? How do you communicate? What do you enjoy? What do you not like? Just getting to know somebody as human changes the game. And for me, it's

A community has been one of the greatest blessings and also the greatest struggle because letting people into your pain and weakness when the world views pain and weakness as something to run from is very scary. Especially as a young adult in a very, a culture that is very self-sufficient and is very like, I need to have all my accolades together. I need to give everybody my resume laundry list. When you come with your brokenness,

and your needs, it's still one of the most terrifying things I've ever had to do, but it's also the most beautiful because people, every human, regardless if they have disability or not, we all create real connection and real conversation. You can't tell me you don't. That's how we were wired. And I think disability just like amplifies that on a new level. So I would say don't assume and just like...

Get to know that person and delight in them.

Amy Julia Becker (22:23)
I love all the wisdom you've given us in this time. I sometimes write down a few things along the way that go with our title of take the next step. I'm thinking back to the beginning of our conversation. ⁓ One next step people could take is beginning of daily practice of lament and gratitude, whether that's around the kitchen table or in the morning with a journal or with the psalm. Just that would be one next step. Another one that you didn't quite say directly, but I think

What I heard you saying when you talked about the Bible study another next step is like assume that what you are experiencing connects to you to other people because we so often assume it actually Alienates us from others, but instead assume this is an invitation to move towards each other And I think that is a really cool concept as well like and then finally what you just said about being in community ⁓ Whether you're on the kind of disability side or not

That being curious, asking questions, and again, ⁓ being willing to connect in those places, both of pain and of joy, will go a really long way. I really appreciate just your, again, wisdom, your willingness to share from your own life. It's really encouraging to me as a parent, and I'm sure it will be to many others. Thank you for all you're doing.

Renee Dollenmayer (23:43)
Yeah, thank you so much for having me.

Amy Julia Becker (23:47)
And thank you for being here.

Thanks so much for joining me here at Take the Next Step. This show is produced in partnership with our friends at Hope Heals, a nonprofit that creates sacred spaces of belonging and belovedness for families affected by disabilities to experience sustaining hope in the context of inter-ability communities. I hope you'll be back next week. We have more great conversations in store. I'm going to be talking with Dr. Kurt Thompson.

about grief and why grief is an important emotion for us to acknowledge and experience in the midst of lives that are good. We also have upcoming conversations about planning for the future, finding community, being a dad of a child with a disability, and so much more. So stick around. Please also follow this show, rate it, review it.

We are just still in the place of building this and hoping that more people know that this is out there as a resource to walk with you and perhaps provide some guidance along this journey of being parents of kids with disabilities. You can always send questions or suggestions by sending ⁓ email to amyjuliabeckerwriter at gmail.com or tap the send us a text link. at the end of the show notes.

In conclusion, want to thank Jake Hansen for editing this podcast and Amber Beery, my assistant, for doing everything else to make sure it happens. And I want to thank you for being here. I hope you leave this time with encouragement to start with delight, connect to community, and take the next small step toward a good future for your family.