“It Feels Like a Life’s Work”

Introduction

How do you write a scholarly article about another person’s loss, heartbreak, and trauma? How does a research project, in all the ways that it must conform to expectations of rigour, of objectivity, and of disciplinary and more general academic norms, not inevitably become an exercise of extraction, pulling from research subjects the information one needs to advance a claim and/or one’s career? How does a research article, usually published for the benefit of the researcher and their discipline, honour, respect, and care for the people whose stories it depends on? These are questions that have felt especially pressing in the writing of this article, which takes a much contested and usually rigidly defined concept – the record (its nature and purposes) – and explores it through the experiences of a particular and previously barely considered recordkeeper: the bereaved.

In this article, we discuss a set of in-depth interviews with eight mothers whose babies died close to birth. In these interviews, these mothers told us the stories of their babies: they told stories about their pregnancies, they told birth stories, and they told stories about the long experience of grieving. Things – documents, objects, bodies, dreams – weave in and through these stories and are attached in different ways to the parents’ work of grieving, loving, remembering, and imagining. In this article, we consider these things, the work they do, and the work parents do with them.

In a blog post reflecting on collecting practices in the time of COVID-19 and of the mass protests against police violence and systemic racism that spread across the United States in the spring and summer of 2020, Eira Tansey justly asserts that “no one owes their trauma to archivists.” Tansey’s post is a timely and important rebuke to archivists who “seem to have this cultural expectation that we are entitled to people’s trauma in the service of constructing a comprehensive historical record.” She reminds us that “not everyone processes trauma the same way,” and that trauma can be reactivated by archivists’ actions. In some cases, though, and as Tansey acknowledges, a “person may find a great sense of relief in sharing their stories.” ^[1] This article, while reporting on extraordinarily traumatic personal loss, seeks also to explore how participating in research can support and possibly provide some of this type of relief. For the people whose stories are shared here, the process of sharing was generally acknowledged as positive and even in some cases cathartic. Several of the participants expressed fear that their loved ones would be forgotten by the living, would disappear in the wake of their “carrying on”; they described feeling disenfranchised grief, a grief that is not acknowledged in society and that includes a sense of being silenced, of not being permitted or encouraged to share their loss and their stories. ^[2] In the field of archival studies, which has historically disenfranchised personal and intimate feelings of loss (grief and others), this article provides a space for participants to share their stories and to give voice to those feelings.

Still, to write about personal and intimate grief, loss, and trauma requires a particular approach – one that is gentle, generous, and respectful; it requires an approach that enacts caring for the people who share their stories and for the stories themselves. We are concerned with acknowledging the losses the participants we worked with bear, and we want to do justice to their contributions and to honour their stories. We see the work of writing this article, as they saw their participation in the project, as a means of continuing both the memories of their loved ones and their loved ones’ connections to the living world. We have been influenced by Carolyn Ellis’s notion of “compassionate research,” ^[3] which is founded on a relational ethics of care, as well as by Lisa M. Tillman-Healy’s focus on “friendship as research” ^[4] and Anna Sexton’s application of friendship as research methodology in archival studies. ^[5] We share with these researchers a goal to “honor, care for, and support” ^[6] participants as they tell their stories and to centre participants’ voices and experiences. One of the parents we spoke with explained how she hoped people would “look with love” at photographs of her daughter, expressing the pain that can be felt as a result of others’ scrutiny and judgment. Her words struck us and have stuck with us, and in this project and article, we seek to “listen with love.” We have worked to suspend disciplinary judgment and to listen to what record-making and recordkeeping means to the parents we spoke with – and to not only listen but also “honor their stories,” ^[7] to research and write with love, and as Tillman-Healy suggests, to “consider our participants an audience . . . and struggle to write both honestly and empathically for them.” ^[8] In this article, therefore, we centre, as much as possible, parents’ own words and stories; we centre their loss and their love and the ways these have shaped their understanding of what a record is and what it can do in the world.

Acknowledging Parents

In keeping with our commitment to centre the voices of our participants, we wish first to acknowledge the contributions of the bereaved parents who consented to share their stories with us; the interviews we conducted with participants were astonishing in their depth and their intimacy, as well as for the openness with which parents shared their experiences and feelings and for the trust they bestowed in us to treat these with care and respect. Here, we introduce the mothers briefly along with their children, using either their first names or pseudonyms as requested.

• Brooke, mother to Eliza
• Claire, mother to Alexander
• Andrea, mother to Toren
• Rose, mother to Jonah
• Ariane, mother to Theo
• Jamie, mother to Willa
• Jane, mother to William
• Mary Beth, mother to James

The Research Project

The interviews discussed in this article were conducted as part of a larger study exploring the relationships between recordkeeping and grief. In particular, the interviews focused on the roles that records and recordkeeping can play in grief work, a term that is used both clinically ^[9] and colloquially to describe how people experiencing grief process and adapt to the loss of their loved one(s). We draw particularly on the colloquial use of the term by the bereaved; as we employ it in our work, grief work refers to the different types of activities the bereaved perform to help them process their experiences of grief, to understand it, to try to integrate it and learn to live with it, and also to remember and continue their connection to their children. In preliminary research on online grief communities, Jennifer Douglas found that bereaved parents identified many types of activities as grief work, including writing in journals, crafting, visiting cemeteries or other meaningful places, and organizing or participating in memorial events or charitable acts in memory of their children. ^[10] In the interviews discussed in this article, we began with an interest in how records are created as part of grief work and/or how records are created and/or play a part in grief work. The interviews also reflect our desire to centre the perspectives of our participants and their definitions and experiences of grief work in and through records.

The Interviews

Between the winter of 2018 and the spring of 2019, Jennifer ^[11] conducted interviews ^[12] with seven bereaved parents recruited by her through her personal blog and through a guest post on a community website for parents of babies who died during pregnancy, at birth, or shortly after birth. Jennifer already knew five of the seven parents through her own participation, as a bereaved parent, in online grief communities and in-person support groups. Interviewees were provided with three options: participating in person, participating online via Skype, or completing a written interview protocol. Four parents participated in in-person or Skype interviews, while three elected to complete the written version of the interview on their own time. A fifth Skype interview was carried out in March 2020.

The same interview script was used in all interview formats, and questions focused on parents’ experiences of bereavement and the role(s) that making, keeping, and sharing records played in those experiences. The face-to-face and online interviews were recorded and were then transcribed by Alex. Participants were provided with an opportunity to review the transcripts and make changes to them as they wished; the aim was to ensure that parents were comfortable with the information they shared during the interviews. Parents were offered the option of remaining anonymous in the transcripts and in any publications that resulted from the research and were also given the option to identify themselves and their children by name. Five parents chose to use pseudonyms for themselves and their babies, and these are used in this article.

As is usual with semi-structured interviews, the interview script was intended as a guide, and each interview emphasized the participant’s personal experience and perspectives. In many ways, the interviews resembled conversations more than formal interviews; as a bereaved parent herself, Jennifer shared with participants some of their experiences, concerns, and hopes. Drawing on these, Jennifer was able to incorporate some aspects of Tillman-Healy’s “friendship as method” to build trust and care through mutual disclosure. With only eight participants, we make no attempt to generalize with this study but, rather, aim to call attention to common themes and concerns that emerged across these particular interviews and to consider the kinds of provocations these themes and concerns raise in relation to archival theory (and to some extent, archival practice).

On the topic of generalizability, we also note that the small number of parents we interviewed is not representative of the population of parents who have experienced neonatal death, stillbirth, or any other type of antenatal death. Stillbirth and neonatal death disproportionately occur in racialized communities, in rural areas, and in families living in poverty, and the availability and types of grief support are inequitably distributed. ^[13] The expression of grief is also affected by culture, gender, religion, and other factors. ^[14] Within the broader population of individuals and families who experience pregnancy loss and infant death, there is a vast range of experiences of and orientations to grief and to ideas about parenthood. Significantly more – and different types of – research needs to be carried out before generalizable statements about records and recordkeeping as related to grief work can be made, even in relation to this one specific type of loss.

A final explanation on the limitations of our approach should be noted: though we have expressed our concern to centre participants’ voices in this article, the project as a whole has not followed a participatory research protocol. As the project’s principal investigator and research assistant, we determined the research questions and the interview script, recruited participants, transcribed and analyzed the data, and drafted and edited this article ourselves without input from the participants other than the information they shared in the interviews. The project did follow a research protocol informed by ideas about compassionate research and friendship. As PI, Jennifer’s direction of the research project has been informed by her experience of the death of her baby and by her participation in grief communities, which also led her to develop relationships with some of the project participants, who were known to her before their participation in the project. Jennifer’s experiences and her relationships to individuals and communities affected the ways both she and participants approached the interviews and what they decided to disclose and discuss; it affected Alex’s experience of transcribing the interviews, as she noticed the ways that friendship and compassion were enacted by all parties; and it affected the analysis of the interviews, as both Jennifer and Alex sought to “do right by” ^[15] the participants, their babies, and their stories. As we will discuss in the next section, the nature of the questions we asked undoubtedly helped to determine some of the kinds of answers we received, and so there are limitations to the extent to which we can truly claim to centre participants’ experiences, despite all our efforts to honour their stories in the “telling” of this research article.

On Records and What They Do

The questions we asked in the interviews focused on how bereaved parents create, use, keep, and/or interact with records as part of a process of grief work. From the beginning, we wanted to create space for an expansive and generous view of what might be considered a record. Recognizing that personal and intimate records do not always conform to disciplinary ideas about what records are or can be and what types of roles they fulfill, we encouraged participants to interpret the concept of record in any way that made sense to them and resonated with their experiences. At the same time, and especially based on experiences Jennifer had when talking about her research with other bereaved parents, we felt that some guidance could be helpful. In the interview script, we included the following statement about our use of the term record:

In this project, we define a record as any document or object that you make and/or keep to remember your baby. You might keep records just for yourself, or you might share them with others. You might keep some for a short while and others forever. Records can include things like photographs, ultrasound images, journals, letters, emails, blogs, hospital records, etc. They might also include objects like a stuffed animal, an item of clothing, a special rock or dried flowers, etc. Records might also include ephemeral items that are important to you because they are connected in some way to your baby or your memory of your baby. Essentially, for this project, anything you make or keep as part of your effort to perpetuate the memory of your child can count as a record.

The definition we provided to participants no doubt shaped the kinds of conversations we had about what kinds of records they created, kept, and/or used as part of their grief work, but we also found that participants, in focusing on an idea of records that is rooted in what they do (i.e., how they support or participate in grief work), extended the role of records well past perpetuating memories of their children. In this article, we explore themes related to the types of things – records – participants talked about as connected to their children and to their experiences of grief and to the types of work – records work – those things performed in the grieving process.

Records of Grief, Love, and Connection

In the interviews, parents ^[16] talked about many types of things as records, some of which can be more easily folded into traditional archival definitions of a record than others. For example, parents discussed medical records, journals, blog entries, photographs, and letters – all of which are materials archivists might be accustomed to thinking of as records. Other items discussed that are perhaps less immediately recognizable as records included memorial tattoos and jewellery, as well as things like trees planted in memory of a child, a child’s physical remains, and even repeated rituals performed in memory of a child. In the next sections, we focus on parent-identified concepts of records.

Objects as Records

Parents discussed how items belonging to their babies were especially important as records; this category included a wide variety of materials, for example, clothing, blankets, stuffed animals, toys, or other trinkets. Jane discussed her attachment to the clothing William wore during the short time they shared together in the hospital: “I still have the Babygro that he was in that we dressed him in immediately after he died. . . . He was so cute in it.” Claire’s son’s clothing held a similar importance for her because it belonged to him: “You know, his clothing, even if he had never worn it, it was meant for him in his nursery and washed and cleaned and ready to go. It was . . . his . . . being with his things.” Ariane likewise spoke of clothing as an important item that she connected with her son: “Most of the baby clothes, once we were done, I would give them to a friend. . . . But a couple of things that I really associate with Theo specifically, I’ve kept here.”

Parents also talked about baby items, stuffed animals, or trinkets they collected or received after their baby’s death as an important part of their child’s records. Ariane described this: “I think most of the stuff I’ve kept isn’t things that actually belong to Theo. Like they’re things that have been added to his records after his death. Because the stuff he used, aside from a couple of little things, they were just stuff.” In particular, she talked about how she began collecting and receiving items related to wild boars, which became a type of symbol for Theo: “My sister-in-law, when [Theo’s brother] was born . . . she brought him a little crochet stuffed animal for him and then one in the shape of baby wild boar, marcassin. So, they would be together, the two little animals. So, things like that. A few people have given us little marcassin trinkets. Like a friend was travelling and sent a postcard with a photo of them.” Andrea, too, talked about the importance of objects that she associated with a symbol of her son Toren and the need to collect them in some way: “A lot of bereaved parents have symbols that mean something to them. And for me it was a hummingbird for specific reasons. So now, if I see something that’s shaped like a hummingbird, I will take a picture of that.”

Parents frequently discussed another category of objects: items that they made or that were given in memory of their children or as reminders of their role as parents or as family units. These included Christmas ornaments, sculptures, artwork, or other trinkets. Of particular importance to several parents was jewellery they were given or had made. Jamie was particularly touched by a gift from her sister-in-law: “My sister-in-law got married three months after Willa died and sent ‘W’ necklaces to female family members and [bracelets engraved with her initials] to male family members, along with a letter to everyone explaining how she wanted us all to wear the jewellery on her wedding day. I’ve barely ever been more touched by a gesture. I saved the letter, and my husband has the bracelet somewhere.” Jamie also talked about her deep attachment to other jewellery associated with Willa or bearing her name: “I wear a ring that says ‘Willa’ every day; I never take it off even for sleeping or showering. I’m as devoted to it as I am to my wedding rings.” Brooke also spoke directly of her jewellery as a record, particularly in connection to her role as a parent: “I also suppose that my jewellery is a form of recordkeeping. Any ‘mother’ jewellery I have that has my living daughters’ names on it also includes Eliza’s name. I wear it often or store it in a jewellery box.”

Nearly all parents interviewed mentioned memory boxes that they had been given in hospital as part of their recordkeeping practices; these acted both as objects and as a way to collect and continue collecting objects related to their babies. Brooke explained that “We were given some memorial items at the hospital – the clothes and hat Eliza wore, the blanket she was wrapped in, handprints and footprints. I kept all of those things in the memorial box they provided on top of my dresser. (Eventually I moved it inside a dresser drawer.)” While many parents expressed that they were happy to have the hospital-supplied memory box, most also expressed some ambivalent or complicated feelings toward it. Claire explained how she initially did not want to keep the box:

When we were at the hospital, they gave us a bunch of stuff. Some of it is pamphlets and brochures. Some of it is his footprints with a poem. A little teddy bear, maybe? A hand-knit blanket. A little memory box that’s really ugly [inaudible], which I would never have picked. At one point, I was like “Ok, I’m going to get rid of this stuff, it doesn’t mean anything for me.” And M. said, “No, hold on to it.” So now that’s sitting up in a closet, on a shelf. I don’t bring it down. I don’t look at it. We don’t use it for much, but we have it.

Jane expressed similarly ambivalent feelings at the generic nature of the box: “So we bathed him, and the nurses who were with us collected bits and pieces for this memory box. So there’s a bit of his hair. And they took his hand- and footprints, which they then made into this really ugly ceramic ornament [laughs] and presented it to us with great ceremony. ‘Thanks.’”

Urns also worked as both objects and receptacles, each used to preserve a child’s cremated remains. Andrea, Jane, and Ariane each discussed efforts to find an urn that felt suitable for a baby’s remains – for her baby’s remains. They talked about how the urns available in funeral homes did not feel right for babies: they were too big, too ornate, too fussy. Jane noted that “William was a little boy. I wanted something little.” Jane, Ariane, and Andrea all described long processes of finding the right urns – urns that in their design, size, and shape could represent their ideas of their babies.

Records of/on the Body

As a record, the urn holds another kind of record: a baby’s ashes. For each parent who discussed them, ashes held particular significance as a record of her baby’s existence. Ashes are an example of a particular type of record described by parents, one that had to do with bodies – both the babies and the mothers’ bodies. Participants talked about records of the body, records on the body, and records that interact with the body. In the first category, records of the body, participants tended to mention how precious anything that had touched or was otherwise somehow connected to their babies’ bodies was to them and how those things – items of clothing, baby blankets, handprints and footprints, locks of hair, their babies’ cremated remains – became significant records as evidence of their babies’ physical presence. Jamie wrote, “I keep anything related to when Willa was alive in my belly, and I keep anything related to her physical body.” Items she kept included “the blanket [Willa] was wrapped in at the hospital, the hat she wore . . ., a lock of her hair, and her footprints.” Ariane, Jane, and Brooke also spoke about keeping hats, other clothing, blankets, footprints, and handprints. These items were often stored or saved in particular ways to preserve the connection they had to the children’s bodies. As Ariane said, “There’s a little blanket and a knitted cap that Theo used at the hospital that we kept without, you know, washing . . . or touching very much.” Brooke explained that she kept these kinds of items in her memory box, only taking them out to look at occasionally because “they are still so tender.” Parents also expressed regret at not saving things that had had bodily contact with their babies. For example, Jane described the careless disposal of items in the hospital: “There was this little hat which he had been wearing all week, which smelled like . . . it just got thrown away without us noticing. I wish, that’s the one thing I wish we had still kept.” Jamie also regretted the loss of this type of record, writing, “I wish we’d thought to keep the initial blanket(s) that Willa was wrapped in at the hospital, the one that she was placed in immediately after birth. It was of course bloody, but that makes me want it all the more. It feels more real.”

Several parents also spoke about making a record of bodily connection to their children through the marking of their own bodies, creating records on the body. “I got tattoos for him,” Ariane explained: “I got one, like . . . very soon after his death, just . . . I had thought about it right before he died. They had drawn up little x’s on his feet to know where to take his pulse, I guess. And I don’t know why, I was like, ‘I’m going to get that tattooed.’” Ariane added that getting the tattoo fulfilled a need she had to “connect the pain [she] was feeling with something more tangible.” Andrea and Jane both referred to their tattoos as visible reminders of their babies’ existence – public, but still intimate, marks of their babies’ presence. As Jane put it, “I wanted something on me for William and of William.”

The bodily quality of records was also identified in the way records could be interacted with; parents talked not only about traces of their children’s bodies on clothes and other materials but also about ways in which their own bodies could touch or connect to the records of their children’s lives. One poignant example of this type of interaction is evident in Jane’s description of a necklace she wears. Jane said,

I also wear this necklace, which has some of William’s . . . his finger and thumbprint. A jeweller came and made these little silver teardrop things. And I wear them on this necklace that I got for my wedding. And they just sit there together, and it sort of jingles and jangles. I always find myself fiddling with it. They’re really tactile. And I probably shouldn’t touch them too much because they can wear away. But I can’t help it.

Events and Rituals as Records

The interview questions asked parents about the types of grief work they engaged in and the types of records they created as part of grief work. Grief work often involves some kind of doing – the performance of some kind of thought or action – and many of the parents described planning and participating in events, activities, or rituals in memory of their children as a kind of grief work. Often, these types of events or rituals have resulted in the creation of records, tangible by-products of the events, saved as memories of both the events and their babies (for example, the printed program for a memorial or a photograph). Sometimes, however, the event or ritual also becomes a kind of record in itself, especially when the event or ritual is repeated over time.

One poignant example of a ritual that becomes a record is illustrated in Ariane’s account of how she and her family have spent Theo’s birthday. Ariane explained that, on Theo’s first birthday, she and his father planned to “go snowshoeing with people and take some time for Theo.” They were able to snowshoe on a piece of land that belonged to her uncle; Ariane explained: “It was just simple to go there and know we had a place to make a fire, and that nobody else was going to be there . . . and it’s a nice, beautiful place.” Without having planned to do so, the group found a tree, which they decorated with objects they found nearby or that they had brought with them: “It kind of just happened that we found that tree, and we made a fire outside, and just were in the snow and . . . I don’t think there was any plan about leaving . . . we thought we were going to leave stuff somewhere, but we didn’t really plan on finding a tree or anything. But then it kind of became its own thing. And new traditions have started to happen.” Each year since, Ariane, her partner, and a group of friends and family have trekked out to “Theo’s tree,” to build a big fire, celebrate, and remember. Ariane talked about how, over the years, and with two small children in tow, making the trip has become more complicated. On Theo’s fifth birthday, she and her partner decided on the drive out to her uncle’s land that they would do something different the next year:

And then we arrived, and all these people showed up again. It’s been five years. And I was just like . . . we’re so lucky to have people that just show up and . . . are there. And were walking with us, and talking about Theo, and talking about other stuff. And how . . . and how that’s been a moment for some people to reflect on the year that’s passed, because they’ve been coming every year. And what their relation to Theo has been over the years. So, I’m very thankful to have people who are just . . . they have been living some grief too, but not overwhelming us with that grief, but just making us feel very much like Theo has been loved and cared for over the years. And he’s remembered by other people than us.

For some of the parents interviewed, their babies’ birthdays have become days when a certain kind of ritual is enacted. Brooke talked about going through “Eliza’s things” on her birthday, and Claire described a tradition of making donations and doing random acts of kindness with her family to observe Alexander’s birthday. Jamie made a deliberate decision to “do something ‘for’ [Willa] every Christmas and birthday” – donating toys in her honour, contributing books to a bereavement room at the hospital where she was born, and giving to charities. On Willa’s last birthday before our interview, Jamie marked the exact time of her birth (2:31 a.m.) by going outside “to look at the sky.”

Spaces and Places as Records

Events and rituals often occur in spaces or places that, like the events, accrue record quality over time. For Ariane, the site where “Theo’s tree” stands possesses a kind of resonance, “linked to the forest and the sea” and the kinds of places she had imagined exploring with Theo as he grew. She noted, “The tree is in itself a place that has grown over the years. And we can see branches falling. And stuff gets broken with the weather and everything, but then we bring more stuff, and clean up that place.” Ariane and her partner chose not to have a gravestone for Theo, she added, but the tree serves a similar kind of memorial function.

Ariane described happening across Theo’s tree the first year and then coming back to the place every following year. Other parents also described finding or making spaces where they remembered and/or memorialized their babies. Brooke wrote of purchasing “a memorial brick for Eliza at our local Angel of Hope statue, in a park.” She added that “We also had a tree planted in her memory at our favourite local park.” These had become places Eliza’s family could return to to feel connected to her at the same time that they provided a visible, public acknowledgement of her existence. ^[17]

The nursery was a space often mentioned in the interviews. Jamie wrote that she kept Willa’s nursery “100 percent intact after she died.” Mary Beth also talked about keeping James’ nursery set up. She explained that the change table in the nursery had become an especially meaningful place: “Every card we get, it comes in here. Like anything that I . . . associate with love for him. Especially from other people . . . is on the changing table, along with his ashes and the little nightlight that we got. . . . It stays on all the time in here.”

Many of the parents also described special spaces they had created in their homes, sometimes a shelf or the top of a dresser in a bedroom, where they kept objects associated with their babies. Andrea described how she “cleared out a space” to keep Toren’s ashes, a music box, a bear-shaped piggy bank, his picture, and his birth announcement. Claire keeps Alexander’s ashes in an urn on a shelf in her bedroom with some special ornaments and jewellery and locks of his hair. When Jane talked about finding the right urn for William’s ashes, she described where she now keeps it: “It sits over on the shelf, next to the picture. And in November we light a candle. . . . [A friend] had given us this nice little candle, like a tea light holder, with a dove picked out in tiny holes, and it’s really cute. So, it’s nice to, well it’s just a kind of little collection over there, which, if you didn’t notice it, you wouldn’t notice it, that’s fine. But it’s, he’s over there.”

In some ways, these special spaces are also recordkeeping spaces, where some of the most special kinds of objects parents described as records have accumulated together over time. As described by parents, the specialness of these records lies not only in their accumulation together as collections in particular spaces but also, as Jane pointed out, in the often intimate and hidden stories that parents have attached to these objects and which have given them meaning as records of their grief and love: the love, memories, and hopes that parents have invested into these objects, which “if you didn’t notice . . . you wouldn’t notice,” but which for parents make up their primary value and meaning. Thinking about how parents bring records together and how they interact with them over time – what they do with their records and what their records do for them – is our focus in the next sections.

What Do Records Do?

In this section, we move from considering the types of things the parents we talked with discussed as records of their babies and of their experiences of grief to consider what the things do, and what the parents do with them, as records. Listening to participants talk about grief work and records, it was clear that creating and keeping records could be a part of grief work, but it was also clear that many other types of work were imbricated with recordkeeping and with grief work. With Devon Mordell, we have previously used the term records work to consider “how people work with records as well as how records themselves work (i.e., what work they perform and what they accomplish or do).” ^[18] Perhaps the most obvious type of work records perform, and certainly the type most discussed in archival literature, is to provide information about and evidence of past events and actions; records are also generally recognized as perpetuating memory. While the records parents talked about undoubtedly served memorial and often evidentiary functions, these were not the only types of records work discussed in the interviews. In this section, we explore some prominent types of records work that emerged from our analysis of the interviews.

Records as Proof of Life and Love

The first type of records work we discuss here aligns, to some extent, with the evidentiary nature of records, or the capacity that records are traditionally understood to have to serve as evidence of past actions and events. As previously explained, disenfranchised grief describes grief that goes unrecognized or whose depth is underestimated; parents of babies who are stillborn ^[19] or who die shortly after birth frequently report feeling disenfranchised grief, as their loss is often viewed as less significant and painful than the loss experienced, for example, by a parent after the death of an older child. ^[20] Most of the parents interviewed – with the exception of Ariane, whose son Theo died as an infant – recounted feeling disenfranchised grief and/or worrying that their babies’ lives would be easily overlooked and forgotten. One of the functions records can perform, as discussed by the parents, is to provide proof that their babies existed and, further, proof that their babies were (and are still) loved and deserving of love. In this way, records have evidential value as proof of lives lived and of emotional and intimate relationships between the parents and children.

Records of/on the body, particularly, were identified as doing this type of records work; when Jamie talked about wishing she had saved the blankets Willa was wrapped in at the hospital, she explained that the bloodiness of the blanket, its smell, the traces it held of Willa’s body, made her existence feel “more real.” Similarly, discussing her understanding of her son Toren’s ashes as a kind of record, Andrea said, “I have so little proof that he was here”; Toren’s ashes were physical evidence of his existence.

A particular record of the body that acted as proof of life and love were tattoos. Parents talked specifically about their tattoos as permanent, public records that attested visibly to the existence of their children and to their ongoing love for them. Jane explained: “Oh, my tattoos are my record. Because that’s exactly what they are. I wanted to have a record that he was here. This kind of evidence. And it’s a reason to talk about him. And for people to ask about him as well.” As visible, public-facing records, tattoos in particular can be a strategy to counter disenfranchisement in grief. ^[21] As Jane’s words make clear, her tattoos are both intensely personal records and records intended to prompt a response from others who see them on her body – an acknowledgement of William’s existence and of Jane’s love.

Other records, too, could be used to prove life and love. The role of photographs in processes of grieving is widely discussed in the bereavement literature, ^[22] and in our interviews, parents discussed the key role that photographs could play to assert the “realness” ^[23] of their children. “I wanted them to see that she was real,” Brooke said about showing Eliza’s photographs to friends, though she also explained that she was reluctant to share photographs unless she felt sure her friends could “look at her [Eliza] with love.” Claire similarly discussed how photographs helped others to understand that her son was a real person, describing albums she made and shared with relatives and friends for exactly this purpose. Brooke also mentioned that she kept all of the “paperwork” (“inconclusive autopsy results, blurry ultrasound photos”) she received from the hospital; these types of “official” records may be a particular kind of proof of “realness,” both the realness of the child and the realness of the parent’s role. ^[24] Jamie stressed, “I have a compulsion to save anything that proves Willa really did exist, so I find my records validating.” In the examples discussed in this section, records are clearly used to validate the experiences and emotions of the bereaved and to attest to the existence of their children.

Recordkeeping as a Kind of Parenting

As well as providing proof of their babies’ existence, recordkeeping was often described by parents as a way to continue to parent their children. The literature on grief related to pregnancy loss and neonatal death frequently discusses the need of the bereaved to find ways to incorporate their babies into the structure of the family and to assert themselves as parents; ^[25] in our interviews, we noted that recordkeeping provided a means of doing some of this kind of work. Unable to perform the usual parenting roles associated with caring for a living child, parents described making, organizing, and caring for records as something they could do. Brooke explained how organizing and preserving “paperwork” related to her pregnancy with Eliza, to Eliza’s birth, and to her experiences of bereavement “felt like a kind of parenting – like saving report cards or birthday invitations, except in the only way I could do it for a child who would never have those things.” Focusing more on record creation, Andrea talked about how, as she moves through her daily life (on walks around her neighbourhood or outings with her family), she takes photographs of things that remind her of Toren. These are images she feels compelled to document, and she keeps them in a specific folder. Andrea sees this recordkeeping activity as a kind of parenting, as something she can do even though she is not parenting a living child: “I can’t take care of him, but this is something that I can do all the time. I can always be taking photos.”

Parents also described different ways that taking care of their records could provide them with a means of carrying on some kinds of parenting activities. Claire talked about how, in “the early days” of her grief, she found comfort in kissing her son’s urn each night before she went to sleep: “I would literally tuck it in to the little co-sleeper under a blanket.” Andrea also spoke about caring for the box in which she keeps Toren’s ashes and other memorial items, explaining how regularly dusting these items is akin to the kinds of quotidian tasks parents grow accustomed to performing, like trimming fingernails and wiping noses. Ariane described caring for Theo’s tree, a record that, like a child, grows and changes over the years; when she and her partner return each year for Theo’s birthday they clear away broken branches, hang new ornaments and tend to the site.

Recordkeeping as a Means of Communicating and Continuing a Relationship

Another purpose that recordkeeping served for parents was as a way of communicating or connecting with their children, of continuing relationships. Connecting and communicating, as functions, are related to parenting, but where parenting is specifically about care or taking care of a baby, connecting and communicating are more elemental; simply put, parents have a (sometimes urgent) need to feel connected to the children they have lost. All parents we interviewed stressed the ways they found – and needed to find – means of connecting with their babies, and they spoke of different ways of doing so. Several wrote letters or journal entries to their babies. Jane did both, “writing letters to [herself] and to William in a notebook.” As she said, she would write “to William about just how I was feeling that day” and “filled up a couple of notebooks with that.” Brooke also wrote in a journal and wrote letters to Eliza. Like several of the other interviewees, Brooke kept a public blog where she wrote about her bereavement experiences and developed a community of other grieving parents as support. She noted that some types of writing, however, were meant to be just between her and Eliza: “I occasionally wrote in a journal or wrote letters to Eliza that I did not publish. The things I wanted to say to Eliza were different from what I wanted to say ABOUT my grief, and they felt too private to publish on a blog.” Rose also talked about writing letters to Jonah in her journal, specifically noting that the “physical journal” helped in “keeping us connected and keeping us loving him.” Marybeth wrote letters to James in a journal that she found herself needing to take with her everywhere she went. Marybeth also described creating playlists and collecting meaningful objects on James’ change table as a way of connecting “not the bad feelings, but like . . . to have the . . . the hope, I guess. . . . To remind myself that I do get to hold him someday.”

Records of the body figured prominently in providing opportunities for connection, as when Jane talked about interacting with the necklace with William’s finger- and thumbprints as a way of connecting her to his presence. The kinds of special spaces described above – Theo’s tree, James’ change table, Toren’s shelf – also created significant opportunities to connect. In all of the examples cited here, recordkeeping was a means for parents of continuing the bond that existed between them and their babies beyond death. ^[26] Several archival scholars ^[27] have discussed the nature of people’s “bodily encounters” with records and the ways that “bodies of records can stand in for bodies of a different sort.” ^[28] For these parents, records could not stand in in the sense of taking the place of, but the records they kept possessed the kind of “lively and intimate” characteristics that Jessica Lapp suggests “defy textual representation or easy interpretation.” ^[29]

Recordkeeping as Imagining

Just as parents spoke of records in relation to the stories and relationships they represented, parents also spoke of the power of records to create new stories and histories – to enable imagining. The concept of imagining is emerging in archival theory in different ways. ^[30] Likewise, imagining as a recordkeeping practice was discussed in the interviews in a variety of ways. For example, recordkeeping could help parents imagine a different past, one where things they wished had happened in the confusing and traumatic time around their children’s deaths could still happen; imagining through recordkeeping could in this way be a way of refiguring the traumatic time of their children’s deaths. Andrea identified several records that performed this function. She described a trinket, a statue she felt compelled to buy and keep with Toren’s things:

It’s a statue of a couple and they’re holding their baby, and I’m assuming the baby’s alive. The premise is that it’s people looking at their new baby. But because we didn’t hold him and really even look at him, it just really jumped out at me that I wanted a representation of what I wish had happened. And of course I would have wished he was alive, but next to that, that we had sort of held him and done all that. And I wasn’t sure whether to buy it. Because, well that didn’t happen. Is this going to just torture me every time I see it? But, it doesn’t. It’s now just part of . . . yeah, part of his things.

Andrea also explained that she had begun to create a kind of “imagined record” ^[31] by sketching scenes she wished had occurred at the time of Toren’s birth:

I started a sketchbook, so I started drawing. . . . I do have this idea in my head that I’m . . . that I’d like to draw some scenes that either happened in the hospital, or during my pregnancy. And also scenes that I wish had happened, like holding him, and all that kind of thing. . . . In the hospital we didn’t take pictures. And when my doctor finally . . . came to visit us, he did sit on the edge of the bed and hold my hand and say some nice things before he had to get weird again. And I like that image, and there isn’t a photo of it. And I was wondering if I could draw it. So that’s what got me started on thinking about drawing.

Through her drawings, Andrea can create records she wishes she possessed, capturing images that are important to her memories of Toren and to how she processes the experience of his death and birth.

Recordkeeping could also suggest an imagined future, a way for parents to imagine what life might have been like for their babies or for themselves had their babies lived. Andrea has a photograph of her daughter, Toren’s older sister, that she keeps with Toren’s things because, in this particular photo, she feels she can see what Toren might have looked like as an older child:

I think of it as a photo of him at three and a half or four. And when the photographer was setting up these little scenes, he had a little toy train or whatever. And fortunately, he wasn’t picking those toys by gender. So when she sat down, it was just a funny moment, because she was playing and when the photographer said, “It’s your turn,” she quietly sat down and put her hand on the train. So, it’s a stereotypical boy’s toy, which also helps me to think of it as a photo of him. It’s so convoluted when I explain it. It’s so . . . it annoys me how convoluted it is. But anyway. I’m putting it on record, that is a photo of him.

Ariane also spoke of an imagined future for Theo. When talking about how she and her family and friends have observed and celebrated Theo’s birthday by hiking or snowshoeing to his tree, Ariane said, “The place was . . . I think because we had imagined, really, bringing Theo in the woods and camping and stuff. And we did. We had some time to do it when he was alive. But then afterwards we were very . . . I think the kind of imaginary universe we were building around him after his death was very much . . . linked to the forest and the sea, and just like him being more present in those kinds of places.” Here, she explained how the repeated celebration, in nature, at his tree, placed Theo into an imaginary future, an “imaginary universe,” where he would grow up to enjoy nature with his family, and where they could all connect with each other.

Here, these parents outline another type of the “impossible archival imaginaries” identified by Gilliland and Caswell. ^[32] These are not imagined-but-never-created records of real events and nor are they used to imagine a different possible future. The records these parents make and keep aspire differently. They are aspiration for what should have been, for a present and future that is only possible in the imaginary but that is nevertheless felt deeply, lived, and held dear. For these parents, aspirational recordkeeping is not done to “reimagine the future” ^[33] but to hold space for an imagined future that will never arrive but that is no less necessary to preserve.

From Recordkeeping as Grief Work to Recordkeeping as an Act of Love

We invited some of the parents to engage directly in an act of imagination, asking them to consider how they would want the records we talked about in the interviews to be cared for if they were ever to be entrusted to other custodians. Ariane reflected on the need for future custodians to acknowledge more than the material qualities of the records; she explained:

I’m not entirely sure, but I think there’s something about how, like, these things just . . . they’re kind of . . . a sign of what we were hoping for. What we were dreaming for our baby. And part of it is just gone because Theo isn’t here. But then part of it just is . . . like these dreams are still, they’re somewhat, somehow, living in those things. Because I think that was very central, also, to the grief, that you’re losing so much that hasn’t happened yet. I feel like a baby’s things are just very much utilitarian things. Like you don’t have time to make memories with most things, because they become too small right away. So what I’ve kept, what has come to have meaning, is mostly what meaning we’ve put in it afterwards. And what meaning we had, we were hoping to give to Theo. What we wanted to see him live. So it’s very . . . I care a lot about the things, but at the same time what’s very central to that is what’s not things. What we were hoping for, what we were imagining for the future.

Ariane’s musing clearly demonstrates how records are not only material things but also the stories that surround them; the hopes and wishes and feelings with which they are imbued are central to their meaning and ongoing significance, as are the relationships that Ariane and others have to them.

When asked the same question about future custodians, Jane similarly explained how important it would be for anyone assuming care of her records to know what they were and what they meant to her, to understand and respect the stories and life connected to the records, and to “to treat [them] with . . . this sort of – reverence almost.” Jane talked about how caring for her records and for her son’s memory “feels like . . . a life’s work almost.” She explained: “I read this book . . . this concept that no one’s really fully dead until everyone that remembered that person is also dead. And I thought, that’s really, that’s quite nice, and so I want more people to know about William. And that keeps him alive, sort of semi-alive for longer, maybe.” Jane talked about recordkeeping – and the work of memory – as work that requires commitment and awareness and that is, in some sense, a way of keeping the dead alive, of keeping them present somehow, of presence-ing. ^[34]

The aim of the parent interviews was to explore the relationship between recordkeeping and grief work, and the stories told by the parents demonstrate clearly that, for these parents, records and recordkeeping have played instrumental roles in the ways they have found to remember, to stay connected to, to parent, and to imagine their babies. In previous work, we suggested the role that records and recordkeeping can play in continuing relationships between the living and the deceased; ^[35] in three case studies focused on research using archival collections, we explored how bereaved mothers have created and interacted with records as a means of continuing bonds with their children and of continuing the social presence of their children ^[36] and pointed to the ethical implications a grief work perspective brings to archival work, raising questions about what it means to “do right by” archives that are always necessarily “linked to a life” ^[37] and about how archivists can enact a “duty of care.” ^[38] Through direct conversation with bereaved recordkeepers, the parent interviews discussed in this article add depth and nuance to an understanding of the “grief work perspective” on archives; they show how records and recordkeeping can be instrumental in the ongoing processing of traumatic loss as well as in the significant work of ensuring that a life has meaning and is acknowledged. The interviews with parents also show how deeply imbricated are love and grief as emotions and as motivations for recordkeeping.

Looking with Love

In both the popular and clinical literature on grief, it is frequently repeated that we grieve because we love. As emotions, love and grief are deeply intertwined, and they are intertwined, too, in the parents’ words we have shared here, where love emerges just as strongly as grief as a motivation for making and keeping records. Brooke’s desire to shield photographs of her daughter from the gaze of anyone who could not look at them with love has prompted us to consider what it might mean for archivists to look with love. Looking with love requires us to look differently at what records are and what they can do. Looking with love, we propose, can lead to an attunement to new categories of records work, new types of records, and new recognition of record values.

Love is an emotion that, like grief, is hard to talk about and rarely discussed as being significant to archival work. In the developing field of feminist love studies, scholars acknowledge how easy it has been to discount love as a proper subject of academic study; as Margaret E. Toye explains, “Within contemporary theory generally . . . the subject of love usually evokes embarrassed responses.” It “suggests a conservatism or even a denial of politics, not to mention an aura of naïveté [and] sentimentality.” ^[39] But love is “increasingly being taken as a serious area of study” by some feminist scholars, who suggest we can consider love as “an important ethical, social, and/or political force.” ^[40] Considering love this way, they argue, “many feminist theorists of love articulate a relational ontology that embeds ethics within their models of subjectivity.” Love, they suggest, “places us in relationship” where “both parties are transformed through their interactions.” ^[41] Anna G. Jónasdóttir views love as “a creative power, a productive force,” one that is “able to bring about change or something new.” ^[42] Love, in other words, has an affective power.

Marika Cifor, who defines affect as “a force that creates a relation between a body and the world,” ^[43] argues that attunement to the affective dimensions of records and recordkeeping can engender new ways of understanding both the value archives have to those who create and use them and the types of acts that archives and archivists perform. Feminist love scholars likewise suggest that attunement to “love as affective energy” has “productive, or positive, possibilities”; ^[44] a focus on love, embedded in a “relational ontology” ^[45] requires particular (ethical) kinds of responses and actions.

Attunement to the affective dimensions of recordkeeping can create space for the kind of “theoretical openness” Anne Gilliland and Michelle Caswell argue is needed to challenge predominant perspectives on the “nature and authoritativeness of the record” and to build “alternate constructions” that centre the role of affect in record-making and recordkeeping. ^[46] Based on our research, we likewise propose that adopting a “grief work lens” and/or learning to look with love can lead to recognition of a wider range of record types and to acknowledgement of creators’ agency in defining for themselves what constitutes a record; while traditional archival theory may not have ever imagined a tattoo or a tree or a baby’s cremated ashes to be a record, the parents we talked to identified these things (and more) as being imbued with the qualities of records, as “persistent representations” ^[47] of their love, grief, anger, and hope, as well as of their children’s short but important lives. With its narrow focus both on archives of government and on records that have been – or certainly will be – acquired by archival institutions, what has archival theory missed? Our research with bereaved parents confirms that records exist outside custody, in personal and intimate contexts, and are not lesser records because of those contexts; how should archival theory and practice engage with these types of materials?

Looking with love also requires us to acknowledge and respect the relationships that exist between creators and their records and to consider how we can honour those relationships as well as how we can treat records not only as the things that they are, but also, as Ariane put it, as the dreams that are living in them: how we can treat records – and the stories that surround them – with the reverence they deserve? Analogies can be drawn between archival preservation practices and the ways that parents talked about the profoundly disappointing hospital memory boxes they received or the difficulties of finding urns that did not feel grossly inappropriate; in what ways do archival storage, representation, and access technologies also fail to meet the emotional needs of creators (and others)? Can these technologies and systems adequately represent the bonds between creators and their records? To what extent do they permit creators’ stories about records to accompany those records into archival custody? As Jamie A. Lee has suggested, storytelling is crucial to archives’ “legibility”; ^[48] storytelling permits archives to speak and be understood, but storytelling – and especially the telling of difficult, intimate and/or traumatic stories – can only happen under certain conditions; are these conditions being met in archival theory and practice? What are our ongoing “affective responsibilities” ^[49] to creators and to their records?

Looking with love requires us to rethink the fundamental premises employed in archival theory to make decisions about what is or is not a record and what needs to be done to records in order to care for them. Some feminist scholars have argued that love “need not be restricted to being the topic of scholarly work; it can also be a way of generating knowledge.” ^[50] Our interactions with the eight mothers interviewed for this project surfaced the power of emotion – of grief and of love – to generate new ways of knowing about records and recordkeeping. Margaret Toye considers “love as a methodology”; citing bell hooks’s focus on “love as practice,” Toye describes how employing love as a methodology focuses attention in particular ways on “representational and ethical issues around research practice and methodology.” ^[51] The same dynamic can be seen in archival methodologies. As archival scholars and professionals, we need to ask ourselves, To what extent is love part of our current concept of recordkeeping, and to what extent should or could it be? How can we centre love as a value in our efforts to preserve and provide access to the records we care for as well as in the ways we interact with different individuals, communities, and stakeholders? ^[52]

These questions inform our ongoing research into the emotional dimensions of records creation, recordkeeping, and archive making. The next step of this project will involve a series of case studies conducted with individual creators and will consider (1) how personal archive creators define records and articulate their value as personal, often intimate, documents of their lives; (2) what types of life stories personal archive creators tell about their records and how these records are bound up in the creators’ own life stories; (3) how personal archive creators care for their own records and what expectations they have for their future care in archival repositories; and (4) how the personal and intimate relationships that personal archives creators have with their records can be respected, preserved, and represented through existing and new archival practices and forms of representation.

We end this article with gratitude to the parents we spoke with and acknowledgement of the impact their babies’ lives have had on our work. In her writing on compassionate research, Carolyn Ellis describes how, “when we engage others’ humanity, struggles, and oppression, we cannot simply shut off the recorder, turn our backs, and exit the field.” ^[53] The work is not done with the writing and publication of this article. As with the bonds parents have to their children, looking and listening with love are acts that continue and that should keep us attuned to the stories and lives at the heart of records and recordkeeping; they are a life’s work.