The Mad and Crip Theology Podcast

Episode 12 Laura MacGregor and Janet Hardy

February 11, 2022 Amy Panton and Miriam Spies Episode 12
The Mad and Crip Theology Podcast
Episode 12 Laura MacGregor and Janet Hardy
Show Notes Transcript

On this episode we speak with Laura MacGregor and Janet Hardy, two authors from the Fall 2021 issue of The Canadian Journal of Theology, Mental Health and Disability.

Laura's paper: A Present Absence: The Spiritual Paradox of Parenting a Medically Complex Child, Parenting a medically complex child is associated with physical, emotional, financial, and spiritual stressors. Despite research indicating that faith and spirituality can be a powerful coping mechanism, the spiritual experiences of parents caring for complex children is not well researched. Drawing on personal experience as the parent of a medically complex child, this phenomenological study explored the spiritual experiences of nine parents. Parents described spiritual confusion and a perceived absence of God that was exacerbated by theodicies offered by members of their faith community. Rather than theodicies that rationalized God amid suffering, the participants of this study described yearning for an elusive God amid the constant paradoxical tension of a frustrated faith where the Divine was a present absence.

Janet's paper: Hope As Community: Spiritual Care for Families with Members Who Have Amyotrophic Lateral Sclerosis (ALS) In our present culture, many people feel that life in the shadow of death with its pain and suffering is no life at all. Yet we all approach that shadow eventually and then, people who were previously healthy learn to appreciate the many good things in life that they’re still able to have. The prospect of death, our own or that of a loved one, brings the blur of life into sharp and brilliant focus. In that respect the dying and their families may be more alive and awake to the truths that emerge at the end of things and more aware of the elements of life that lend existence its meaning. Sorrow can move us to participate in moral obligation to a full encounter with life or shut us down with a hardened heart. How we live in death’s wake is a deeply personal consideration. When confronted by a terminal illness with a timeline that provides for contemplation, adjustment and a runway to influence quality of life, there are opportunities for a patient, their family or community surrounding that family to determine how best to positively influence the end of life experience. Amyotrophic Lateral Sclerosis (ALS) is such a disease. 

Read full papers here

Welcome to the Mad and Crip Theology Podcast, hosted by Miriam Spies and Amy Panton, which comes out of the Canadian Journal of Theology, Mental Health and Disability. We both live and work lands that have been homes and remain homes to the Mississaugas of the Credit, the Haudenosaunee, the Huron Wendat, the Neutral; and the Ojibway/Chippewa peoples and other peoples who have cared for the land. We are grateful for the opportunity to live and work on this land and are mindful of the need to repair broken covenants. This podcast is an opportunity to model how faith communities can engage in theological and spiritual conversations around madness and cripness. If you need a full transcript you can find videos on our Youtube channel. We want to say before we begin that topics and conversations we are raising throughout our time together are often hard! They are hard for mad and crip people ourselves and hard for our families and loved ones.

So, do what you need to do to take care of yourselves, your bodies, minds, and hearts. And now, here is our episode.

Welcome to this episode of the Mad and Crip Theology Podcast. We're delighted to be joined here by two of our contributors from our fall issue, Laura MacGregor who's a familiar voice to the show and Janet Hardy, so we are grateful for your presence today.

Thanks so much Miriam, um yes and we're so we're so grateful that you joined us today um and we wanted to see if you wouldn't mind taking a moment to introduce yourselves. I’m sure our listeners will remember Laura, and she's been here quite a few times and she's part of the "fab four" when we do our round table podcast, but Janet's a new voice here today so we're so happy that you're here with us Janet! So maybe Janet I’ll ask you to introduce yourself first, so if you could just let us know your name and your pronouns and how you're connected to the journal and then just give us a brief description of what you look like for our our listeners we would really appreciate that. Okay well maybe I get to be an honorary fab five today then that would yeah that would make me feel pretty nice on a chilly afternoon, uh so uh my name is Janet Hardy and I am um pronoun she/her, um my connection to the journal is wonderful Amy and Miriam asked if I would contribute one of the articles one of the papers I had written as part of my studies at Emmanuel College where I graduated May of last year 2020 uh inter in with a Masters of Pastoral Studies in in the Christian stream and I had written a paper for Pam Pamela McCarroll's course called the course was entitled Suffering and Hope and in it we studied a textbook uh that Pam had written about the end of hope. And a number of the chapters are kind of characterized as hope as fight and hope as surrender and hope as you know kind of these various narratives around a hope journey and I thought that I would contribute a couple of stories one from my deep personal experience and one from kind of rather a distanced personal experience and define a new chapter not for Pam to publish but simply just to add to the conversation around hope as community, so that's really the genesis of the article and because it deals with the very difficult disease of we all know is ALS which does bring profound consequence physically as well as relationally and cognitively in some instances you know kind of fit I gather with the way that your uh journal was navigating towards addressing some of these issues of where you might you find spiritual nourishment in the midst of um whether or not that's a a a health crisis which has a beginning in the end such as um ALS or in some cases obviously are chronic ongoing um difficult situations uh that um that other other folks surround so that's really where um the background is. And in terms of where I can kind of continue post graduation to connect myself into the community of um of ALS and and different different other communities dealing with um whether that's mental or physical decline it has been very difficult because I’m retired and so I am now moved into the volunteer kind of community and with the various ups and downs of um lockdown with vulnerable populations in particular it has been difficult to generate any momentum so I do do um just like we're doing today remote support of a couple of ALS families and remote support as I can for one of the senior care communities in Toronto but I’m going to be able to be back in with them next week not the ALS families yet but into the senior care community so um so that that's really I guess where I would be in terms of life stage. Uh and um I also provide some pastoral care at my my church community and do some spiritual guidance work uh spiritual awakening study work at my uh in my church community so. As I said I kind of look I did brush my hair but usually it looks a little more like hat head I’m constantly wearing a fuzzy jacket which right today is kind of a cream-coloured with a little black trim around the throat which I got from one of my daughters for Christmas and I have jeans on and the constant presence of a pair of fuzzy slippers seems to just round out the winter outfit um for the day so that's a little bit about me. That sounds so comfortable Janet I was I was thinking before the podcast started I was just out shovelling the driveway so I have like Canadian like hood hair right now because I have my hood over my hair so locked a lot of fluff and frizz so thank you so much Janet and welcome to to be the fab fifth today. Excellent. Yes and Laura would you mind uh introducing yourself? Yes thank you so much for including me once again I’m always always so happy to be part of these conversations, they're always so interesting and uh yeah and just exciting and I love I love all the connections and the people and the ideas that that we've shared it's just it's just wonderful. So I’m Laura MacGregor I’m an Associate Professional Faculty at Martin Luther University College in Waterloo Ontario it's a federated uh part of federated college with Wilford Laurier University. Um I also so I wear a couple of hats there I teach um I am the director of the Luther Center for Spirituality, Disability, and Care and we I’m also the coordinator of a continuing ed program that looks at disability and Christian ministry basically um so lots of different hats, um my pronouns are she/her um I’m connected my connection is always sort of fun because I met Miriam when she was maybe nine or ten um my son was actually only a baby and had been recently diagnosed with cerebral palsy um and mostly what I remember about Miriam at that age is she kicked my fanny at cards um and then I met Amy at a symposium several years later several years later like a few years ago and then um I guess we've just stayed connected in our our interest in exploring disability theology, mental health and caregiving so it's just been a really wonderful organic connection that's been so enriching for me um, and in terms of what I’m wearing I am wearing a sort of cream neutral colour turtleneck mostly because it's really cold where I am right now and I have covered hair but it's uh for the first time I think in a very long time not in a ponytail which meant that someone on a zoom call this morning struggled to recognize me um and I think what uh that's probably about it um excited to be here thank you so much.

Thank you so much Laura I was thinking your your beautiful hair and your sweater and your background it reminds me of watercolors today it's just such a beautiful sort of serene calm background so we love it.

Awesome well we'll jump right into our first question for both of you um Janet's article describes hope that is found in community for families with members with ALS and Laura's article describes a lack of hope, spiritual 

confusion and an absent God for families with medical medically complex children and so we wondered we wanted to pose a question around hope and ask is hope easy to identify or was it a struggle to find in the stories and in the peoples you were engaging with so I think we'll invite Janet to go first in this so

Thank you Miriam. Um it had been a while since I had read my own article and it um and it gave me the privilege of reading Laura's article um kind of in in in short time frame but one against the other so it was um it was kind of it was really interesting for me, and what I realized is that I had the privilege of distance from this family like I mean we were intimates but I was not living day to day hour to hour minute to minute um immersed in in the care um of of a person um a beloved person who was needing the level of care and had a prognosis that maybe you know was always you're always kind of struggling with where does this go next so I do know that my narrative for some people would seem slightly naive maybe or slightly uh overly optimistic, I I don't really know but I feel as though in contrast to Laura to your situation I had this I had this distance it gave me a totally different lens from which to kind of process uh this ALS journey these ALS journeys and and to kind of you know I got to be the witness not necessarily the living breathing integrated that person's life is dependent upon me kind of um character in the middle of of these these different kind of um situations we're exploring. So I do know that if I had written this article with my um girlfriend as wife as primary caregiver I would have had a different paper to write because her journey was that profound and I know at the end of Peter's life this uh she was just gone you know like she'd almost disappeared in the middle of her own life because she had just given everything she had um so it would have been a different narrative so I do want to say that my um my hope as community lens is of a particularly you know particular nature where not only are we a step removed from the day-to-day but we also then have this support network of each other, like we have a circle around this situation where if any of us began to struggle we could hold our hands out bound uh to find somebody to share our grief with or um you know to kind of problem solve or whatever it was that was needed kind of at the moment so I really did find that super interesting in reading back back reading my article after I had read Laura's um and so so hope in the middle of all that I think is a bit of a different existential question um that maybe had a more straightforward practical answer than it would if I had been the center at the very heart of the narrative like Laura you were, so hope was not hard to find and in fact it was this deeply enriching life experience for so many of us, um but we were not the people who were kind of at the heart with with really the overwhelming burden that was navigating every second of it all. Thank you Janet that's interesting to note the differences from where we are located in relation to finding hope yeah. Laura, I invite you.

Yeah thank you so much. Um like Janet um I read that the two articles side by side for the first time last night, I had read Janet's article many many months ago I think when the journal was first published but not right alongside my own work and so doing that was was really helpful and I’m looking forward to the conversation because I think there's a lot of overlap and there was much about Janet's article that I found fascinating and and with strong resonance to some of the work I’m really interested in, but to go back to the question about hope, um I think my first thought when I read the question around is it always this easy to find hope um and and this idea that the families that I was connecting with were struggling with an absence of hope, my first thought was I wasn't sure they were struggling with an absence of hope they were struggling with a perceived absence of God um but what I I found utterly fascinating is that even amid this journey of of grief and spiritual confusion and perceived absence of God, there was enduring hope that this hope that God was somewhere in the chaos and the incredible um optimism in some ways against all odds that led them to continue to look for God and to hope for God within this overwhelming sense of chaos um so that I think was was one of the things that really struck me, and I think for these parents the challenge was the paradox, this paradox of living with this this utter confusion spiritual loss spiritual confusion spiritual loss existential crisis alongside this paradoxical hope this tension of living with this this confusion and loss with this hope that God was there and and and there was joy amid this chaos at times it was just a very I think for many of the parents it was a very complicated and very conflicted experience um and story. Does that answer your question?

Yes thank you that the presence of hope in that paradox, thank you.

So Janet I’m going to ask you you a question next about your work um you mentioned before that you have your transition to be out quote quote in the field now providing care so we were wondering how have you found your transition um from the classroom to to the field and uh have you has your idea of hope changed since you've begun working with families and and other individuals?

Well I I think I call like I I don't think I have a kind of this um universal understanding of hope anymore I think I I just find that hope is kind of just buried in the authentic experience that each of these families have and I find that um

that that uh hope is

hope coming up I guess I find hope comes and goes that that there are days when I I can lean into suffering alongside somebody else and I I can feel their strength I can feel a strong day I can feel a more hopeful day, maybe there was a burden relieved around a physical situation or maybe a cheque came in the mail or maybe ah you know whatever it was a phone call was made that just seemed to nourish somebody and and this sense there's a little this sense a bit of momentum and then there would be other days where you just felt that momentum had been reshifted in a different direction there had been another crisis to manage and I found that hope is so correlated with physical capacity that I think I’ve learned that as well that as as the physicality of um a declining progressive disease begins to take its toll not only on the patient but the caregiving family that this this notion of hope just kind of has to shift it keeps moving and morphing in different ways and I think in my article you know I kind of talked about it moves alongside whatever the grief stage is so this kind of stage of um of early diagnosis and grief just looks like this this kind of loss of dreaming this loss of this loss of a sense of where the future is and so the hope the hope questions and the hope for the feelings of hope just kind of shift into whatever the question or the the issue of they find themselves kind of bumping up against, and then it moves to this stage of every couple of days there's just a shift in the well-being physical uh emotional well-being of their loved one and so there are good days and there are bad days and you can just feel the momentum it's almost like hope is momentum and then hope is deflation move and morph uh through this fairly extended period of time. And then actually they're settling into this like a bit of it's a calmer more peaceful stage as it becomes quite clear the end is is coming and their loved one doesn't speak to them so much anymore, this the the grief associated with that stage of where you find hope is you almost begin to shift as the panic to breathe and the panic to eat and the pain and the and the frustration you see in your loved one as they attempt to try and just communicate that please turn off that TV show because actually you had me watch that yesterday when you see that your kind of those sorts of interactions um it's almost like there is kind of this acceptance hope, to some extent hope moves into a phase where you have no choice but to somehow be just calm and patient because the end is coming um and can what do you want to what do you want to leave behind ,what kind of hope do you want to leave with the person who who is there as your loved one right? You want to leave this sense of um they had deep meaning and you you were just a great presence in their lives and so you you I think you approach kind of hope a little bit differently so the momentum of that hope is kind of gentler and um it's there's no hope for anything but a peaceful end, it doesn't have an unknown termination the termination is not known you don't know the day but you kind of almost know the month, um and then then you fall off the cliff then your loved one dies and you fall off the cliff and then hope looks like redefining your whole life because all that gave you to some degree some stability, meaning and purpose no matter how difficult that was is gone and of course your dear loved one is gone and until the last breath they're still beside you so then hope has to move into almost like this regenerative definition of hope, it needs to have a new parcel to live in um and and I guess that's kind of what I would say, it was it's such a journey and it really depends on what stage of life or death the loved one is in and it's so correlated with the stages of grief, it's kind of that hope and suffering paradox right um our tension that um it just it just always constantly reminds me that all we can be is a presence that recognizes and is aware of as as best we can of exactly where everybody else is at not you but where everyone else is at and then your then definition of faith or what you can bring to the equator, faith and hope what you can bring to the equation just has to be in response to that kind of awareness and that quiet presence that you need just to bring to the situation until you can move to some form of comfort or action or support or whatever the case would be.

Thank you Janet and I I was wondering as you were talking how did you feel going back to your paper, did it feel like your research was um like connects well to your experience now that you're in the field or does it feel like would you like to have rewritten sections? Yeah I I you know I’ve I’ve always been accused all my life of being too perky uh and so I would say I just read that and I thought oh my heavens there she is miss rosie rose-colored glasses um

I I probably would have been uh you know I tried my best in the visuals in that article to represent these different stages that I felt like I we journeyed alongside um but because I was just dealing with a very personal situation and then the one that we dealt with as a community from a bit more afar um you know I didn't really necessarily explore how unique everybody's journey was you know like there wasn't a sense of this how do you translate that towards somebody's journey that was actually not like that at all right like I’m gonna I will simply state that our social location of this group is affluent and educated and and all of the things that we could bring to the um to the party um were were as a result to some degree of some of our privilege and having this beautiful core group of people who just stayed connected around a single cause we had good moment like we just had a good hold a good center and we these were beloved friends these were beloved like some of our favorite people so they were such a magnet for our our support. I also will say that um from a social location perspective I grew up in a rural farm community where this is what people at church did so to the other article to Jeff’s situation I find that now that I’m in Toronto in an urban environment in an affluent congregation that the culture is so totally different so I recognize that once again this kind of this concept of being in this rural small comparish situation is this is how people live their faith, they weren't we were we were theology light embodied big and so uh like like I can you know you just move to food and you move to who needs to go where and what you need to have picked up you move into those directions quite quickly and practically and in some ways that's all in it sometimes that's all you can do so now that I’ve transitioned out of theology school um with some um with some more conceptual um frames I feel sometimes I have to really push myself back into embodiment like to really be an embodied spiritual care practitioner and not simply a practicing kind of arms length

conceptual just just talk about it be a be a be a passive presence uh so I’m really I’m kind of and COVID hasn't helped because it's very hard to be an active presence so but as we move forward from here that this is going to be one of my tensions is how how do I combine both pieces of that how do I take my life narrative as this embodied faith practitioner uh alongside this found kind of role as a bit more of a cerebral spiritual care practitioner. Thank you Janet, it's so important to name and recognize our social location and how that shifts embodiment in our relationship with each other.

Let's move onto Laura. One category Amy and I were really drawn into was when you named parents as having a frustrated faith this paradox of God feeling absent while eager for God like you talked about in your introduction so we might we wondered if you could talk a bit more about the paradox and how what is the role of others alongside people with frustrated faith?

Yeah thanks for that question. So I used the term frustrated faith to describe the tension that the parents in my study were living with all the time so just to orient readers who may not have read the article I spent time listening to the stories of a group of a small group nine parents in southwestern Ontario who were raising children who met the definition of medical fragility by their local home care team so for those who may not be familiar with the term medically fragile, medically fragile people I was looking specifically at children but people, are people whose health care status can change quickly with little warning and condition can deteriorate rapidly with potentially life-threatening consequences so that one of the the difficulties of parents raising these children is that it is entirely possible your child can live for a very long time with significant health challenges, it is also entirely possible that tomorrow you could be calling 9-1-1 and your child doesn't come home from that hospital trip. Both of those are realistic in the lives of parents raising these children. One article which I cite uh is an article that compares the parenting of these children to living with a time bomb, you don't know what's going to happen, you don't know if it's going to sit quietly in your living room forever or if something will happen and there will be significant consequences or loss of life, and so these parents live with the ubiquitous presence of the unknown um and the knowledge that they are responsible for trying to keep their children as healthy as possible for as long as possible, so this is a really difficult journey for parents um and the parents are doing significant levels of care that Janet describes in her article so very these are very complex children who are usually uh receiving complex level nursing level care so they have feeding tubes uh one family had a defibrillator in the home these parents function as 24-hour nurses and they do this for for a very long period of time with no real understood end point perhaps the way ALS has an a better understood endpoint, so there is this sense of ongoing overwhelming responsibilities with no end in sight and so a chronicity and a chaos and an uncertainty to this experience. And so in this story the parents described this overpowering love of their children it's the love for their children this is why they were making these often massive sacrifices was simply because they adored their children, they loved their children and they were deeply committed to their flourishing, however their lives were also extremely overwhelming and they lived with numerous losses both in terms of parenting their children but also their own personal stories, they gave up jobs they lost friends, they couldn't leave the house, uh we had one parent tell a story of going to the washroom and coming out and finding her child that stopped breathing you know so even something as simple as going to the bathroom was overwhelmingly challenging. But in this story they loved their children and they found joy in their children and they found joy in the moments of parenting their children the silly the silly moments parents experience stories and bubbles and music and cartoons and in those moments there was there was a great sense of joy but this was this was always balanced with with this overwhelming sense of responsibility, fear, tension, and chaos and so navigating this and looking for God became overwhelmingly challenging. And it became more challenging when they went to church and people would offer these overly optimistic and what I call tidy theologies where God was explained so God is you are going to learn much with this journey, yeah that's true but it also is very difficult um so these sorts of tidy theologies theodicies that the parents were on the receiving end were often very challenging and it left them uncertain where God was, their community was so certain where God was, was often telling them God won't give you more than you can handle, here is God God, their community would locate God for them, the problem was they couldn't locate God and so they became overwhelmed and this frustrated faith of you know where God is but I don't know where God is was often existentially challenging but I think again what was amazing is that they lived in hope of finding God and they often continued to search for God within this very complicated isolating chaotic disorienting story and journey of faith these parents continue to live and hope that God was in the story and they often looked um and what was overwhelmingly difficult. And what led me to to sort of label it as frustrated faith was was that they looked for God and often couldn't find God there was this deep sense of loss and absence and it was exacerbated by a community that so confidently located God for them. So in terms of responding to it I think much of what Janet talks about in her article about presence and about support and about listening, about willingness to enter chaos, willingness to offer practical support all of those things that that she talks about in her community as hope I think are really relevant and the parents would have absolutely loved this kind of support from their faith communities, they didn't get it and I think that's the problem and I think that's a conversation that I’m really interested in having with Janet is why was one community so willing to respond to a particular story and these parents found that their faith communities not only failed to respond but exacerbated their sense of isolation and at times offered these these explanations for God that even felt judgmental you know you are paying for a sin perhaps which parents were on the receiving end of and so I think I think there's a really fascinating conversation there so that's sort of a long answer I think to the question of sort of what was going on and what would I would suggest well I would suggest communities be willing to journey with these families knowing that this is often a long and difficult journey with an uncertain ending so it is it is very different than perhaps the ALS story.

Thanks so much Laura, and I wonder you provided the most perfect segue there between questions I wonder if you would like to talk together and explore your question about um why why do some faith communities seem to be able to provide the care that's needed and some really drop the ball uh when they should be able to hold it? So I wonder if you you want to start there, usually at this point in the podcast we we ask our our guests to talk to each other about each other's work so all right. What do you think Janet about what Laura says. I know I I I feel like I want to apologize on behalf of all good churchgoing people to Laura's and her community I I um oh there's two things that come to mind for me. One is this idea of embodied faith versus kind of this sense of theological certainty and so when you talk about God, I I just wrote down like it's it's like to me there is no "the God" like "the God" means that there is some sort of narrative or some sort of image that is certain that that is maybe that's the white guy in the sky on the cloud and they know all and they see all and they decide all and so that really to me um certain narrow image of not a her him not a young and  old not a you know not an up and down um it is such it's it limits people, it limits people's capacity to love, um and it limits people's capacity to think on their uh on the think think for themselves, and so I do not belong to a congregation and I never have in my whole life belonging I mean I’m a United Church person we're always just spiritually rather fluid and seeking right there was there was nobody to tell you this must be the definition of yours now maybe when we were little kids in Sunday school and I’m 65 so that was a long time ago we did have the pictures on the wall uh but I haven't seen those for quite a long time so I often find when I when I when I heard you talk about like they've lost God or I just wonder what the reference point for God is for them such that it um it seems rather static or certain and then the then the chaos gets thrown and when that certain God disappears in the middle of it all you're left hanging without kind of a seeking frame of reference or um or the I don't know if it's ability or the capacity to kind of open your mind around well maybe that Sunday school version of my God was not so hot uh in my world at present. So um I think that's one of the reasons I ended up after a business career back in a manual because I just felt as I had no framework for my own interpretation of what I thought of as the divine presence I’m not even quite sure I use the God word so much anymore um because after studying many faiths I obviously there is no one word I mean there is our word if you want to have an our word but um so that's kind of my this kind of reference point of this God image and how it could easily be lost if you're in a congregation where people have this very certain static image of God so that was one thought that came to my mind it's kind of like well that what's your God what's your you know what does your God feel like um what's the presence of your God feel like not necessarily "The God" so that was one thing. And then I just also feel as though you're describing the tension I feel all the time between the institutional the institutionalized church and our faith at heart and I actually think the simpler the the you know you can you can know every word of every scripture and not live it, I’d rather live a few simple beautiful passages then be able to quote every passage in the bible and think I’m smarter than your average Christian, um so I I tied up in the crisis for religious institutions right now is this issue of certainty because it leaves no room for people to be faithful in a way that makes sense in their current context, society, and so on so I just I I feel the tension of this question I always have is could the church stop being an institution, and could it simply be a community of faith journeyers who are always a work in progress? If we could get there I think we'd have a lot more companions along the journey as we have now.

Yeah so sorry can I jump in now? Absolutely. I’m not sure. Yeah so it's interesting I’m looking at my notes on sort of a page in terms of this question and I have a lot and it didn't even sort of touch on what Janet just uh just noted and uh but I I I agree wholeheartedly. So a couple of things in terms of this whole idea of who and where and what is God for these families and I think I agree with you wholeheartedly is that many of these families were navigating um a spiritual journey that involved an institutional church and so God had this very particular definition um and they were actively struggling with that particular understanding of God in part because of ex not in part because of a great deal of their story with their their child, um I think though this idea of God as community and God as as communal support and God and faith expressed in community was also a concern because I think they also felt that they didn't get that um that this idea of parent of people journeying with them and being being the hands and feet of god in very practical ways got lost um and I think there are lots of reasons why it got lost. These these stories they told are so threatening um similar to the stories of living with ALS they are deeply frightening, terrifying stories and these families were you know they would be constant reminders when coming to church of this amazing level of chaos that involved children and I think there's something that even heightens it when there's children involved, it really challenges a sense of a good and loving God when children are suffering. Um and so that's that's one piece I think the other thing is is that these parents and as we saw with this frustrated faith in this constant yearning for God, they hadn't forgotten God, they were continuing to look for God and they were developing their spiritual lives and their faith in ways that that moved away from the church these people would all still identify as deeply spiritual like these parents would identify as deeply spiritual people and they were engaging in a very rich and active faith life it just no longer involved church and what's really interesting is that right now I’m very privileged to be part of a study funded by the Louisville institute that's basically moving the next step beyond this this particular study I did several years ago where we're talking to parents about what their spiritual care needs what what would they what would they want and and what uh what what is going on in their their particular spiritual story and many of them talk about leaving church or about having much of their spiritual life being satisfied beyond this institutional understanding of God and church. And so I agree with you there's something really really important going on there um and that if we as a church community as a faithful community of people um want to continue to support and care for one another we need to be listening to these stories and and and hearing how they shift our understanding of of the divine and what it means to live in community with one another and what it means to be the church um for and to one another so I think it opens up lots of really fascinating questions and and I’m so grateful that you raised them. Yeah I could, I have there's so much I want to talk about with regard to the study I’m aware of the time because I think you know we need a second hour um because there was I found so much overlap between your your paper and mine, and there was so much that I found resonated for me both as a parent who cared for one of these children and as a researcher who was deeply connected to this community um but I think one of the things that I’m curious about is is that there seem to be this real difference to how communities responded to these what I would call extreme caregiving situations, um and I think we both were describing what Lisa Freytag describes as extreme caregiving, and one of the things I wondered what are the differences a that we're dealing with children is it or is it because there's and the words I used were time, predictability, and choice in my notes that the care community in the ALS community sort of this care group in the ALS community um first of all there was a much more there was a clear sense of a defined timeline, you weren't committing to decades potentially ongoing ongoing extreme care, there was a predictability one better understood the illness narrative in a way that that a story with a medically fragile child one doesn't understand, but there's also the element of choice that with the exception of the family caregivers and I appreciated that you tease out family caregivers and caregivers by choice, the family caregivers are thrown into this in a way that they don't have a sense of choice um and so there's this overwhelming sense of loss and chaos that comes with that whereas these community caregivers have a choice and have therefore an ability to set boundaries on their their ability to care. The other piece that I think might be interesting is that I look almost exclusively with very rare exceptions at mothers and I think there's a narrative around expectations of martyrdom, mothers in particular are expected to care with almost no limits, um so I I’m I’m I’m wondering and I’m just aware that we don't have tons of time left but I’m wondering if these are things that that might help us understand why the story of how a community responded to extreme care might be different? So like I have um I I like your delineation of communities of choice um so I’m going to I’m going to say that you know so that intimate family connection we had as a community of choice um there's an integration that like some of us were more aware of than others so I would have I think a predisposition, a better predisposition than some of my colleagues uh in this community uh to kind of be aware and to kind of be able to go to navigate what I I could speak to the family about in terms of their needs at the moment, so I was not afraid of those kind of conversations and I am a badger I’m a badgerer of families who do not want to ask for help because they are stoics and I sort of say listen like you know we can't help you unless you just strip it all away and say I am buried today could you come I’m buried today I can't buy a slice of bread because that's one of the only ways that that kind of um that we as a community choice can navigate in a more intimate re um responsive kind of manner. So I do think totally different communities for sure but I do but I think in the middle of all that in a traditional rural church we would have a minister or some sort of pastoral care leader who is the translator that also pastors to this question of please just you know we have a lineup of people who are prepared to do things for you just just ask, so I I think in navigating that I would sort of say it's it's important and maybe that's somebody like me who now has some spiritual care training um where we can act as kind of the bridge that kind of understands the spiritual well-being aspect the psychological well-being aspect but at the same time understand relational well-being, physical well-being, financial well-being, vocational well-being, all of those moving parts we do have some of those models as pastoral care practitioners whether that's in a faith community or just you know in a more secular setting and you know so you need a translation note a note of translation that can then move out more broadly to define what can be done. And so you know I think one of the things that the whole community was very aware of is taking those bricks off your shoulder which is what bricks can we simply take off, what are the easy small wins that this community of choice can make by taking the bricks off? So there's a brick about money right that we were able as an affluent group with GoFundMe and these various different now technological support systems to be able to help as we could and one of the primary ways we helped was in an integrated fashion by a by paying Peter's daughter who was just graduated from university seeking her way in the world to be at home with him for a whole year paid her 17 dollars an hour and she was his primary care and the minute she moved on from that she moved to Ireland to be with her boyfriend on a Monday and Peter died on a Tuesday, she was actually the 22 year old glue that held much of their family together through all this time and she was willing and to do that, so I just I do think that there's just this sense of if we had a little bit of an integrated model that would say to Laura and family, we want to help we are a community of faith community that does understand some sort of sense of embodied faith experience life um and and we know we have these various dimensions we have a pastoral care ministry who's going to translate like let's just move into into a community of choice that just has a sense of a knowledge as to how to help best because to your point, like man at the same time we're all looking at our dear friend dying going oh so by the grace of God, you know you kind of have you do have these narratives that you sort of say to yourself, um uh that we know are pretty typical ones like the ones you alluded to in your article which horrify me now that I’ve been through seminary uh which is you know, you can only handle what God gives you, well I’m sure I heard my grandparents say that probably about a thousand times but you know we know more now than we did then or some communities know more than we did then so you know I I would I would argue that there are pathways through the right person in your faith community to maybe activate it but you're in the middle of chaos so how are you gonna like how are you gonna be the person who manages that right?, that actually has to be an active aspect of their faith community life, their church life so to speak.

Janet we're wondering if you had any questions for Laura that you wanted to ask her about her work. Well I I you know I just actually we wanted to know um in your article your dear Matthew died in 2020 in the midst of a whole pile of other kinds of chaos and you know I don't know if it's been two years now or a year and a half now or whatever the time frame is but when you reread this article and you put 18 months or 20 months or whatever the time frame is between you and the article what like what bubbles up for you or what comes, um what comes up for you that says okay I’ve had another 18 months to journey through this kind of spirit, these these questions of my own faith and my own spirituality or my own institutional church experience and you know have you come to any I’m not going to say different perspectives but have you evolved along with some of the questions and the paradoxes you were exploring in your paper?

Wow okay um.

That's yeah maybe. Um so it's been it will be two years in march so uh next month so we are coming up on the two year anniversary of Matthew’s death and Matthew's birthday was uh just a couple about a week ago actually we just celebrated his birthday we now host an annual food drive so that's how we celebrate his birthday. Um

yes and no um. And I think one of the things I really liked about your article and I think it was on the second page where you talk about the stages of grief and you talk about the complexity of death of the experience of death and for me personally reading your article now as a mother not as a researcher I actually found that very affirming so one of the things that's very complicated I think for my story and I think it applies to parents who are well people who care for medically complex people with intense caregiving needs is that the death is both devastating and a relief um and so you name that and I I found that very affirming because certainly that was my experience around Matthew’s death is um we were devastated that goes without saying um but there was also this sense of relief both because I don't think I understood or could destroy describe the cluster the word I use now is claustrophobic sense of responsibility and uh and caregiving demands that I lived with for 21 years and to not have them became very noticeable um so this idea that now I could sleep through the night you named that in your article, um there was that sense of a bit of relief there also relief that Matthew Matthew was no longer suffering and just to be clear I am not conflating disability and suffering I am conflating, I am sorry, I am emphasizing that he did suffer in an embodied way with significant chronic illness and pain particularly probably in the last year of his life that were linked to his disability but it wasn't disability equal suffering I just want to be very very clear about that.. Um it was it was the illness the chronic illness piece so the fact that we that there was some end and closure around that was was helpful and I appreciated that you named that in the earlier part of your article when you were discussing stages of grief associated with chronic illness in particular in terms of my

my personal response and sort of have I come to any new conclusions? Um I almost want to say no. You're allowed to say no. Yeah I think partly because I think there's a sense that there's just this continued journey of of making sense of this story I lived with Matthew that began 23 years ago and so for me I’ve been living it and trying to make sense of it for 23 years so and and part of it was we in some ways were prepared for Matthew’s death from the moment of his birth so this has been something that has been that has been part of my story part of my journey as Matthew’s mother and as Matthew’s primary caregiver for a very very very long time so.

And I’m and I’m and I think part of it is I I refuse to just sort of engage in what I me name him as a quest narrative around this story and this his death and his life um I I refuse to paint it with a Disney paintbrush, it is a complicated paradoxical and at times awfully chaotic story and I think that has to stand. Um

have there been moments of profound beauty and learning along the way? Absolutely. Do they compensate for the pain and loss. No they don't and and I’m not gonna sit here and say they do so I I think that's sort of a complicated but brutally honest answer.

But but that's what I agree. Sorry go on. I think that that's yeah that just kind of sounds authentic to me like that just sounds like why wouldn't it like I I guess I wasn't trying to ask whether or not like you'd had some sort of epiphany and like always better and your heart is healed and all that kind of good stuff it was just uh you know it was just a bit more even like for my own personal um pastoral ministry like what what could a faith community have done different or what could like you know what like as you as you process and you think about the alienation so many of the families in your research felt from their institutionalized faith community, what what less like um in your experience, are there lessons for those of us who are desperately trying to keep our declining congregations open and relevant and meaningful um you know for another few years until I don't know secular society decides maybe there is no spot for us left in the world and we have to redefine ourselves in totally new ways which may lean into exactly what you're trying to trying to say you know?

Yeah no and I think you like you're I think one of the things I loved about your article is I think you hit on a lot of the ways that I think faith communities can respond, be present listen and you really in many ways echoed um some of the stories the parents are seeing in my most recent research that has not been published yet because we're still in the data analysis stage but but you describe a lot of what they want um honour the stories, enter the chaos give practical support, offer funding, do fundraisers, uh drop off casseroles, offer child care and play dates, um be my friend that was a huge part of the research that emerged or the findings that emerged from the most recent um project. And and and the way you describe it be my friend in a way that I can ask you for help I can tell you when I’m drowning um that you'll come and have coffee with me and and be okay with the fact that I’m not okay like really and the parents are asking for this kind of support don't offer bible verses yes bible verses might be helpful and and some parents are going to find that deeply meaningful and I don't want to suggest that it's not true but please don't have a begin and end with a prayer um. We don't have to light the candle every time we get together all that. Yeah yeah yeah like be my friend, drop off a coffee, take my kids out for playdates, you know let me take a nap like these things were really important and and faith communities that that understood that this sort of this the the hands and feet of God um and the church matter all week long um and in really informal and practical ways um and I think the other thing that parents really were really emphasized and now I’m sort of starting to talk about about the research I’m doing now simply because it really grew out of this project and starts to answer some of those questions um is this idea that that the safety of my child in this community, so knowing that my child is respected and loved and valued and that the community is going to go to great lengths to include, welcome, accommodate, celebrate their gifts and leadership that is as much a part of the parents spiritual care as anything else knowing, that their child is in a community where they are safe safe and loved is a significant part of the the parents the the sort of the parents needs and their spiritual care. So I think I would say to churches um well if I could speak to churches I would say throw everything you do out and start over again. Think about who's not there, why they're not there, you know and and what what we're really being called to do and then be open to radically new ways of doing it. And that might include hybrid worship, that might include worship that's not Sunday morning, that might include you know sermons that involve painting and yoga and music and drumming and are less intellectual and you know that's you know that's what I want to see is this growing into this church that that embraces all but then cares for all, right it's of the people for the people

Yeah which is kind of go back and read the New Testament again and really really uh yeah embody what was being purported. Thank you. Thank you for your research too.  Awesome.

and uh also yeah thank you for your journey sharing your very authentic and powerful and sad journey all of those things all at once.

Wonderful we get an insight into Laura's new research which is very exciting and along with continuing our work we wondered in just one minute each or 30 seconds each, where do you find energy to do this work, what keeps you going doing this work?

Oh just cause it gives me such meaning and joy and you know sometimes it's just as simple as it feels like the right and good thing to do, that's all nothing more complicated than that nothing cerebral nothing but kind of very just heart that's where my when I feel good I feel warm in the middle of my chest so I know what's right and good for me to do, so this kind of work brings that warmth talking with people like you and hearing stories that are good, bad and all often in between um that that it is the stuff of life, it's not just the stuff of people who aren't Instagram worthy, it's the stuff of life and I and as I try a role model for my family so much in this world is artificial and two-dimensional or one-dimensional on a screen and really you never know when you're going to be some place different and what you want are good people, good and right people to to be with you along that way so um be a good and be a good person just goodness. Thank you Janet. And Laura?

Yeah I appreciated this question, thank you and and I’m actually going to circle us right back to where we started and say that my answer is hope. Um that that the energy for this work comes from a deep deep sense of hope that we can do better um and hope for the future that the church can do better um hope that I can do better um and that I can be helped I can be part of the story of helping us all find a new way to live in community and support one another particularly those of us who live complex and chaotic stories. And I think the last thing I would say and and where I draw energy, I draw some energy from my anger well I’ll be clear about that um but also from from you know so here's your answer also Janet, from my son's life and legacy there is a sense that that I honour my son's life and my my son's legacy and and some of the chaos we lived by doing this work um and if I can in any way be part of helping us imagine a new way forward there's a sense of calling in that and so there's also a sense of deep meaning for me and for this very chaotic and complicated story I lived and I live, I continue to live.

Thank you both so much. Thank you for your good words, your bringing your heart into this conversation, we really appreciate both of you. Amy, any last words. Just to thank you both and say how just how um much we appreciate your your research um and contributing to the journal and just for being you, we're so happy to know both of you so thank you. Best wishes along your work and contribution, so you guys are doing fantastic as well, the fab four, fab two plus whatever. Thank you Janet. Thanks for including me again I love being part of these conversations such a joy to meet you Janet and you know thank you for the incredible and tireless work that you two women are doing, it is so important, and I am so grateful. Yeah, awesome, well done.