Season 3, Episode 4: Emily Duggan & Keith Reynolds

Join us for an episode featuring Emily Duggan and Keith Reynolds, clergy in The United Church of Canada.  They reflect with Amy and Miriam on experiences of caregiving and care-receiving: Emily with her daughter and Keith with a member of Avondale United in Stratford. Watch on Youtube with subtitles here: https://youtu.be/t-aKY4Kacyo

We encourage you to read, reflect on, and discuss both of their pieces in the Spring 2023 issue:  https://jps.library.utoronto.ca/index.php/cjtmhd

Let us know what conversations / ideas this episode stirs up for you!

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Transcript

Welcome to the Mad and Crip T heology podcast we're so happy that you joined us here today and Miriam and I were talking before the episode we don't have too many announcements today so we're just gonna get right into our conversation with Keith and Emily so I'm gonna ask you both to introduce yourselves for our listeners so would you mind starting us off Emily and introducing yourself? Sure hi thank you so much for having me here um I am Reverend Emily Duggan a minister of um a two-point charge in Catalone and Louisburg Cape Breton Nova Scotia and uh my husband Tim and I live in Lewisburg with our two kids Grace and Gus and uh Grace is the subject of my piece of writing but uh I'm sure I'll talk more about her later.

Thanks so much Emily and Keith welcome! T hanks Amy it's such a treat to be here with you I really appreciate the invitation I'm uh I'm Keith Reynolds I'm uh father uh son a brother a friend and a minister at Avondale United Church which is in Stratford Ontario and uh the piece that I wrote um uh a little bit to do with my connection with L'Arche which I've been a friend of for for 30 years now I guess so it's it's great to have a chance to be part of this conversation and I really look forward to engaging with you Emily I I really valued what you wrote and the things that you offered not only to me personally but to uh to a much wider audience that the journal provides.



Yeah we're happy to have you both and I'm happy to have United Church well represented on this episode!

Um we wondered if you couldn't both briefly summarize your pieces for folks who may not have read them yet. So Keith maybe you can do that? Sure thanks Miriam the piece that I wrote was a little bit of a creative non-fiction writing that engaged a relationship I have with a woman named Terry from L'Arche in addition to being a friend of L'Arche Terry also is a friend of Avondale Avondale is her home church and has been for many many years and I found that once I came to Avondale as their Minister about a little over six years ago I discovered how deeply rooted Terry was as part of the community and over the time getting to know her I observed and witnessed all that she brought to the community in terms of care both receiving the care the care from community but the special this thing that I noticed especially was the care that she offered the Avondale community and that's what I tried to focus on in the writing.

Thank you and Emily? Emily and I have been friends for over a decade at least 

so I was delighted to have you when Grace was born and delighted to him more about Grace and Gus over their lives. So Emily can you share a bit about your piece?  Yeah it was um you know it was such an honor I think Miriam kind of nudged me to to write something when uh when um she shared that there was a caregiver um issue coming out so um I'm really grateful for Miriam uh giving me that nudge because this this piece was really important for me and um helpful I think in my own processing and in my own um you know in unpacking my own uh role as a caregiver and so that that was kind of the point of the piece and talking about my experience as a caregiver to my daughter Grace um just a quick quick background on Grace she's seven years old now but when she was only um just shy of five months old she was uh she began having seizures and was diagnosed well eventually um through a bit of a medical journey diagnosed with a rare genetic condition called Fox G1 syndrome and uh so um as we began our medical journey I was uh given that this piece of writing called "Welcome to Holland" and um it's always been something that's been on my mind and kind of bothered me for some reason I never really understood why necessarily but I I wanted to think a little bit more about that and about what our life um life as a caregiver and and how we um what those supportive spaces for caregivers um has been like um you know especially raising a child with a complex medical condition where uh it's called you know there's there's complexities for her life but there's complexities for how her care is is um understood as well so I this piece of writing was a way for me to just think a little bit more deeply about that and uh yeah and what it means to to offer support.

Thank you so much both of you for those summaries and um we as our listeners know we usually prepare questions in advance for to talk to you about so we wanted to ask you a little bit about your experiences of being clergy today so we're wondering um what do you want other clergy to know about caregiving from your pieces? Keith would you mind getting us started?

Sure thanks Amy what a great question to launch things off I

honestly I the vocation of ministry is so vast and varied that I think the particular story that Emily shares and the particular story that I share are rooted in in context that are are personal and unique while at the same time might offer some some universal components that people might find a landing spot in and so I guess for my relationship with Terry and what I noticed through Terry about what she offers the community is I think the the invitation to pay attention the the encouragement to slow down and the awareness that each of us has a gift to bring as flawed and wonderful as those gifts are that it's an opportunity for us as clergy to not only be attentive to those gifts and the unique value and dignity of each person but try to discover ways on how we might cultivate those gifts in the setting of the communities in which we find ourselves my community happens to be a church setting a community of faith and so paying attention for me is how Terry's invited me into being a minister differently and trying to listen and see and learn and grow and ultimately to have my heart opened to a reality that I didn't anticipate or a way of being a minister that I I didn't map out or control or have some strategic plan for it that it it's ultimately about relationships for me as in my vocation as a minister and I would I would encourage clergy in general to to listen to how those mutually transforming relationships can open our hearts to ministries that may not be expected and yet at the same time invite us into a much deeper richer soil that God's planted us in.

Can you tell...this is kind of an on-the-fly question but do you have any thoughts about how your time at L'Arche has um given you some insights into how to minister to Terrier and provide care to her?

L'Arche has been really formative for me Amy I I would say in large part because it was timing I I lived in L'Arche while I was going through school studying for Mmnistry and so that combination nurtured things from a very early time on um but I would say the one of the core values of L'Arche's mutually transforming relationships that it isn't uh it isn't a strictly care caregiver care receiver role that there are moments where uh I will be asked to be the caregiver and and that's my role and I'm happy to offer that one of the mysteries of L'Arche that has taught me over the years and can continually does so is the opportunities to be open to receiving care and those things come often surprisingly and in times that are unexpected but it's that it's that openness to being transformed by these mutual relationships that honor the gift in each other and honor the authentic witness that each of us provides as people but also in the context of a community where relationships are held beyond simply just me and you but that we belong to something bigger than ourselves and that belonging to something bigger is part of that transformation process that hopefully helps us become more human.

Thanks so much for that Keith it's awesome um Emily would you be able to share with us what you uh want clergy to know about caregiving from your piece?

Um yeah I I I've been thinking about this question and I I don't know if there's something in particular um but I know that um I know that for I think my um my pastoral care role has been impacted by my own role as a caregiver because especially if someone's going through um medical challenges or or facing their own medical complexities I think I it you know I have a better much better understanding of the kind of layers and and and challenges that are involved in um I think you know I think I think that's definitely helped me in my own um my own ministry and and I would hope that that maybe um other clergy might just be able to to think about what what that's like for for folks going going through um going through that um I think too um I mean I'm so grateful for the uh what I've learned about advocacy from the United Church I mean I feel like the first time I wrote uh a letter in a letter writing campaign was in the United Church in the United Church setting so I know that clergy are you know prepared to do that advocacy work and and so I I hope that that might be um something that they could um use in in everyday settings I mean especially for supporting families and and I think that's you know I think that's one of the things I've um not felt the most lacking but just felt um so isolated in being able to um use that role of advocacy and and wish that there was more um more support in that way I wish there was uh a larger voice of of people to to be a part of that and I think clergy have the the skills and the you know the the calling in in their work that uh that could be a very um critically supportive role to play so um I think that would be one of the the my the hopes that I would have to to encourage clergy to to be able to to offer.

And Emily we wanted to ask you as a follow-up question for you how did you um how have you had your clergy colleagues care for you as you are caring for Grace and your other family members um and how what other ideas do you have or or wishes that you have that clergy could ways that clergy could care for you?

I have it's been such a gift to have so many clergy friends because um I know when I when all of Grace's health concerns were unfolding I was still on maternity leave and had time I guess in a way to to be able to to work through the initial phases of Grace's health concerns I mean looking back I probably should have taken some medical leave on top of my maternity leave but I didn't you know didn't do that but anyway um but when I was went back to work I had friends and colleagues send you know full worship services or send um liturgical resources and things that could help especially on um in in really busy and overwhelming times and that was such a gift because um I've always sort of in in ministry I've always believed that we could be doing a much better collaborative uh work around supporting one another I mean it's uh so that was such a gift and so many of my colleagues did reach out and offer um just you know personal support a shoulder to to lean on and and listening ear um and um I think that was you know that was important and it was welcomed and needed.

Yeah that's awesome to hear Emily. 

Um we we wondered Keith in your piece you share this beautiful image of how Terry embodies care  

and you later on in your piece it mixes with care that can be a kind of failure too out. of our own humanity humanity and we think we know tensions between relationships between time and power and so on and we wondered how you sit with or sit in the messiness of caring and navigate those beautiful moments and those failures.

Thanks Miriam that's a great question I would honestly say not all that well sometimes yeah I mean it's sitting in the mess of things is hard it's challenging it it takes me to a place that I I don't want to go uh it it has me look at myself in a different way than I would have wanted myself to be or believed myself to be and so sitting with that mess of failure uh I think is a is an opportunity to to dwell in in the gift and the wound of being human I mean that the wonderful thing about human is none of us are perfect and the desire for perfection is not going to lead us to being a greater caregiver at least it never has for me so maybe others know how to navigate that better than I do but I think in in your and Amy's editorial that you wrote in this issue being present with the mess and the and the disruption I think says it well that there is a kind of summons to being present and what that means to me about being present is is not to be distracted to notice to take the time to sit with it in all the discomfort and dis-ease that it it asks of each one of us and then somehow in that deeper level to trust that there's a there's a deeper reality there's a hidden gift there's a undiscovered grace that's waiting to be given and I can't manufacture it I can't control it I can't manipulate it but when I trust that even in the mess and the failure of difficult relationships and caring that there's there's there's there's something below that around it within it that if I'm present and patient and allow that to have room to move on its own then I I somehow become met by that I I don't do anything to make that happen and that's why I I guess I ended with describing it as grace because that's how often I I encounter God so I think it's it's somewhat fitting we're having this conversation with a daughter of Emily whose name is Grace right like like there's something that grace offers as a person of faith for me that I I find often in the celebration and the wonder and the great joyful happy moments of life and the the reality of Grace for me is is felt more deeply and resonates with a stronger tune when I encounter the mess of life and living and relationships so I'm I'm trying to learn to be more grateful!

Yeah yeah we can't be grateful all the time yeah but I I thank God for God's question and many in many moments so thank you for naming that um. Thank you.

Emily we of course the next question that we have for you is about um when you enter this triathlon with Grace what team of people met you at the arrival gate and how have you felt that community of care for yourselves and Grace?

Um the uh I think I mean I I always love to um or I I have to mention my mother because she has been um an incredible source of support for us she's actually a speech pathologist who worked with children and then managed a children's treatment center uh for a good part of her career and so when she retired just before Grace was born and so I she has been such an incredible resource to rely on because she she knew the exact supports that we needed or she she just she helped to guide us in a lot of the the direction that we needed to go for Grace's care and I you know I'm really grateful for that because it's incredibly overwhelming to um to look at the amount of of care that's needed and I think that there's um I don't know if it's something that happens in the medical system where you know doctors and and we've had an incredible team of support for Grace but this is something they do all the time and I think they forget that that parents new parents or you know caregivers of a newly diagnosed complex kid um this is the first time we've had to deal with any of this and so I think being able to have my mom there navigating or helping us to navigate through that was so um was so important and then we had um I mean I Keith it's it's interesting that you mentioned um how Grace's name does is pretty incredible because it does remind you of grace and and we have received just so much grace for Grace like during long hospital stays or extended uh periods of of intensive care for Grace we'd get a text message from a congregation member saying you know I left some food on your back step you know like it's there waiting for you when you get home you know or the number of times that people just stepped up to um to offer that kind of care was it was amazing um and um so I think you know that that team of people we we've been um yeah we've had we've had a lot of a lot of um a lot of support in that way.

That is awesome to hear I love it when people drop off food that's like the best um we wanted to ask you as well uh Emily if you could share uh how stories in the Christian tradition uh shape your care and advocacy for Grace are there any that are special to you?

Um you know I I made a couple of references in the piece to the um the caregivers of the the man who was paralyzed and the kind of length that they go to to to seek the support that he needs um another passage that I I love is the the story of Ruth and the kind of um solidarity and and um advocacy role that that Ruth plays and in in never giving up and and I think that that's been um for me um you know I I it's entering this journey as Grace's as Grace's mom and her caregiver I mean I'm never giving up on her and you know it's it's um so easy to love and care for her because she's the greatest joy of my life um but you know it's it's having those people in your corner who who also offer that that care and and connection for us um and so I think that that "wherever you will go I will go" is uh been my sort of um uplifted me but also been a reminder that this is it's not we're not alone in doing this we need the we need those people who say I'm with you and I'm not giving up on this and uh

I think those are the the type of illustrations from from the Christian tradition that I would be drawn to.

Yeah those are gorgeous gorgeous stories to draw on um we last lastly we invite the authors to chat to each other so you put you've read each other's pieces and heard each other reflect more so we wondered if you have questions or thoughts or care for one another so maybe Emily you can begin if yeah.

Yeah Keith thank you so much for for your peace and um I loved the um I loved that image I think that Miriam mentioned earlier of Terry embodying um grace and I think it's it's so it was um helpful for me to hear the experiences of Terry in a worshiping community because I we actually don't bring Grace to church on Sunday mornings um mostly just because of the amount of effort that it takes I'm obviously in a leadership role so I can't be caring for her while church is taking place and you know we also have a you know very busy toddler um and so for for my husband to pack the kids up and bring them to church it's just a lot of work but um but I also think I you know I think we are concerned about the kind of um reception that Grace receives when we do bring her to church she's you know she has uncontrolled vocalizations and um you know isn't uh a typical able-bodied worshiper and um I think you know there's hesitance or worry or um I you know and I I just wondered about um what you would say or offer as a um a way of making those spaces in church settings?

Yeah one wonderful question Emily um I mean you're living the reality right like you you and your family are embodying that hospitable invitation for a community to respond to and so I I hope just in how you've highlighted advocacy is being uh a significant thing for you as a parent for Grace I would hope that there might be some folks in the congregation that would see you folks as a family as an opportunity for their advocacy and I I guess when I think of advocacy in the context of a community you would it would be about how to create a sense of belonging and how to create a a space where where people can be welcomed and the particular gifts that people bring can be welcome and and it's not going to be always neat and tidy and it's not always going to be what church was like when I was a child 50 or 60 years ago or even 10 or 15 years ago and so I I would hope that there might be some folks in the congregation who could make that journey with you and Grace and your family and to uh to say we want we want there to be space for people like Grace and people like Grace invite us into the mystery of Christian community which is that we belong to each other um hum, yeah thank you

And that's a nice connection with the question I was going to ask you Emily you had a great way of describing um God's grace being embodied through action and then you give examples in this conversation of food being dropped off at the door the way your mother has been a wonderful resource for you and and how you as a family are are working this through together you then went on to talk about vulnerability and shared community and I wondered that phrase was a really nice uh image for me and I wondered if you might be able to articulate or explore a little bit more what vulnerability and shared community looks like or feels like or or might sound like?

um

oh um

I think um

oh that's that's a very good question and I think it it catches me off guard a little because I'm uh um I don't know I I

try to remember where I wrote about that at the piece um

yeah yeah okay um I'm sorry

That's okay you were talking about the um the disciples witnessing witnessing Jesus after the breaking of the bread and um and they knew it was Jesus with them and so it was the actions that were reminding them of the vulnerability and shared Community together and I thought what a great image not only to draw from the gospel there but what a great image for for we as part of a Christian community that embodying God's actions of grace but realizing how vulnerability can be an essential part of shared community and how shared community can lead us to a kind of vulnerability that may not be possible in other places and so I maybe I wasn't as specific with my question but I hope that helps a little bit no it does thank you um yeah and I I think that um you know I I think that um Grace has sort of um or you know being Grace's caregiver has really um has really reminded me that um you know there there are um I don't know how to I I I'm not finding the words to articulate this but um you know I think we we all have we all come from a place of vulnerability and especially as communities of faith and I think that that is something to see as a gift that we can hold one another in these vulnerabilities um you know it's it's always been a struggle for me to talk about Grace's story um because it's received with so much pity and I'm I'm hoping to get beyond that sense of of pity toward um towards something deeper where we can say this is just a you know it's it's a different way of being and a beautiful way of being uh that you know Grace has an incredible quality of life in who she is and how she is and I think that you know if as a church as a as a community of faith I think we can we're much better to to be able to acknowledge those those different vulnerabilities and be able to see them as something that we can um you know something that that's that's a gift something that that contributes to the community and um you know what I think too like I um I would desire that um that Grace would be able to have um you know be able to to be a part of the community for who she is and um and move beyond that sense of um you know like I said pity but or or thinking that she um is only there as someone who needs help or support I would you know I would envision a a space for us where she is welcomed in for exactly who she is and you know we're we're starting to see that um especially with some of her peers you know at school she's um we were so worried about sending her to school because it's a smaller it's a smaller community she's you know maybe the the only kid with the kind of complex care needs um in her her class but the kids are you know interactions that we see they're starting to interpret her communication they're starting to to learn her language of of saying oh you know that movement or that um you know when she gets happy she really her whole body shakes you know and so they they can tell that that she's happy and they uh we we saw one interaction in particular where you know her arm movements can be pretty random um in in how she um and how she moves her arms around but one time at the skating rink with her class she was moving her right arm to the side and the little kid who was pushing her said oh she wants to chase that kid who's just over here she's pointing at them you know and and those moments of of um of connecting with her were beautiful for us to see because we know that there's there's something happening um with with the other kids where they they're they're learning beyond just the the typical ways of of being and I think you know that's um I think that's kind of what what I was trying to get at with with vulnerabilities and um being that shared community together.

Yeah thank you Emily and Keith.

What I heard from both of you talking about Grace and Terry I'm reminded of a writer of Tanya Titchkotsky she is in disability studies, I'm using her in my work, so she writes about people being "desired" to be in those spaces 

so I kind of like belonging but I think it's desiring – in Christian Community we desire to know each other to see God in one another in the community and my prayer is for there to be places where Grace and Terry and us are desired to be there so that's  what came to mind when you were talking.

Uh thank you so much for this wonderful

conversation

um it's it's great hearing about about the stories of caregiving and then the hard places where we need that community so any final comments?

I would simply say thank you I've found this conversation to be uh quite wonderful and rich and I and hopeful I I find though the work you both are doing Miriam and Amy to be uh quite inspiring and uh the breadth that you're offering to the Canadian context and beyond is is quite hopeful for me and then having a chance to sit with you like this Emily and hear some more of your story I I'm I'm quite hopeful that that care is being embodied and lived out in some really wonderful ways amidst all of the challenges that come with caring that that the embodied witness of caring is is happening in some some wide-reaching places so thanks for this opportunity.

I also wanted to say thank you to to both you Amy and Miriam uh for doing this and um you know the all of the pieces in this issue were I I haven't had a chance to get through all of them but I I it's been such a gift to be able to hear everyone's stories and and I think um um I think having that space to be able to to express you know the the role of caregivers and and and those those complex and and and you know um challenging but also joyful and uh and um deep moments are it's it's been such a gift for me to be able to share share my experience and um thank you so much for for making the space for everyone to do that.

We'll hopefully see more of your work in coming issues.

Okay bye for now