Dios, Fe, Acompañamiento, y Remembranza

Prominent Themes for Families Dealing with Illness and Death in Chile

The way that I am learning about support for families before, during, and after the death of a child in Chile looks very different from how I approached the question in New Zealand. Unfortunately, again, I am facing similar concerns over whether or not I am truly learning what I set out to explore and if I am doing enough to understand my topic.

In New Zealand, I think I often looked for differences. I had the benefit of sharing the same language as the people I met with and so I asked a lot of questions and talked a lot. And, through moving around the country a lot over the course of my 3-month stay, I got to talk to many people, doing all kinds of different work related to this topic, and coming from different backgrounds, points of views, and areas of expertise.

In Chile, I’m doing a lot more observation. I’ve been finding themes and commonalities. That is not to say that I haven't spent time noticing how these perspectives, structures, and systems vary from what I know from the US and what I discovered in New Zealand at the same time. But, given my limited grasp of the language when having conversations, I don’t always understand every detail of what is shared with me, so I am forced to focus more on the big picture and learn more from what I can observe from the behavior of the people I interact with, the set-up of the organizations, and the features of the community. Another difference between the way I approached my project in New Zealand and how I am doing it here is that, during my time in Chile, I am working with only one group, Ronald McDonald House Foundation in Chile.

Through conversations both within my project and just with some of the great Chilean people that I have met during my time here so far, exploring different parts of the city, and getting involved with the work at the Ronald McDonald Family Rooms in different hospitals in Santiago, I have noticed a few themes around how people here seem to approach and view caring for sick family members and death.

El Papel de Dios

The Role of God

When designing my Watson project, I originally chose El Salvador partially due to the strong presence of Christianity in the country and how that shaped the lives of many if the citizens. When I changed my to Chile, I believed that I was going to find a similar thread here, based on my research. However, a handful of weeks prior to my set arrival in the country, I heard anecdotally that religion does not have the big of an influence in the region nor is it very important to many Chilean people. Exploring the role of religion and spirituality in different parts of the world is a main area that I wanted to examine as part of my project, so hearing this threw me for a bit of a loop. But, I kept on and knew that even if true Chile would still have a lot to teach me and would have a very unique perspective to offer my project, albeit different than anticipated.

During my first 3 weeks in Chile, while attending my language classes, I resigned myself to the fact that I would not be able to look at the influence that Christianity has on many Latin and South American cultures, particularly as it relates to facing challenges, while here. My perspective at the time, though, was pretty narrow. I was mainly interacting with other foreigners also attempting to learn Spanish at the language school. Even though I knew that over 80% of the country's population identify as some form of Christian, with the majority identifying as Roman Catholic, I thought that maybe it was more of a nominal label rather than a dominant force in the lives of the people here, given what I had heard.

Then, I began my work with the Ronald McDonald Foundation here in Chile. Almost immediately my worry of not getting to see the role of religion dissolved. This past week, I had the opportunity to participate in a program setup by a 3rd year social work practicum student completing her placement with the foundation. She designed an activity to help parents in the family rooms get to know each other better and support each other in their journeys. At the end of the activity, she invited parents to write words of encouragement or support that had helped them on difficult days or that they thought would be helpful for another mother or father to read when things got tough. The first hospital family room had 3 parents attend the activity. All 3 hearts mentioned God. Out of the 12 hearts in the second family room, 5 mentioned God. In the final family room where we did the activity, all but 2 of the hearts made mention of God.

Some examples of the messages on the hearts include:

• Dios es grand. La fe nunca se pierde.

• Dios es amor.

• Confiar en Dios.

• El tiempo de Dios es perfecto!!!

• Dios te bendiga.

• Dios es contigo <3

During the activity, one mother even shared with a young father a testimony of her faith. The young father's child had never left the hospital and had been having a really rough day. Meanwhile, the mother had her child with a similar condition sitting in a stroller next to her, at the hospital for a day of testing but otherwise healthier than anticipated. Due to the language barrier, I am not sure what elicited the conversation but the mother asked the young father about his faith. He shared that he is having trouble believing in God at the moment. The mother shared her personal story and the strength that she got from prayer, communicating with God, and putting her faith in something greater than herself. It allowed her to make it through months in the hospital with her baby and celebrate the wins and remain feeling safe and secure on the hard days. She told the young father that it is vital to believe in something bigger and grander than oneself when facing difficulties in life or you won't have the strength to persist and persevere. Her passion caused others in the group to share how a relationship with God had helped them on their darkest days, too.

After the group conversation, I spoke one-on-one with a parent. I asked about community and where she found support. Her answer was simply: the church. But I dug deeper and asked if that is where she always got her support or if it only began when her child got sick. She told me it was the latter. For some, like the young father, the illness tests their relationship with God. For others, like this mother, it is illness that helps develop it.

Fe y Pensamientos Positivos

Faith and Positive Thoughts

Relatedly, keeping faith was very important to many of the parents who participated in this activity. It should be noted that all of the parents present currently had a child hospitalized - some in the ICU, some with cancer, some premature babies, some with illnesses waiting to be diagnosed. Yet, a number of the parents said something along the lines of what was written above, "El Tiempo de Dios es perfecto." Others talked about God's grander plan, everything happening for a reason, and it all being part of a bigger divine purpose that they just are not aware of yet.

All of this really stuck out to me as I sat and listened. To interject a bit here, I also participated in the heart activity, writing a note to go on the wall of each room alongside the parent's. This was challenging for me, not only due to the language difficulty. I wanted to struggled to find a message that struck the right balance between offering positive words of encouragement as the activity intended, staying away from toxic positivity, not being prescriptive, avoiding platitudes that can be well-intentioned but not always well-received, etc. I ended on something somewhat neutral that I could write in Spanish, jotting down "Tu eres fuerte" on each of the hearts I created. And, then I read the hearts that the parents read.

It was yet another moment of cultural recognition. I believe that a number of people in the United States would find comfort in reading "Faith moves mountains," "God is with you," "God is with all mommies," or "A mother hold her child's hand just for a moment, but their hearts for a lifetime. God's timing is perfect." At the same time, I know that there is no way it would be permissible to put those messages up on the wall in common spaces, in a family room at a children's hospital for example. While working at Connecticut Children's for my child life practicum, I helped to sort through very thoughtful messages included in donated gift bags for the oncology patients. We had to remove cards that said things like "God bless you," "Get better soon," or other messages that dictate how a patient should feel, have a religious message, or might not be appropriate given the context of the health issue at hand.

I was so caught up in my head about what to write, because I didn't know what would be supportive to and appropriate for these families, in this country, in this culture, in this circumstance. Another thing that I found to be common in both the US and NZ is allowing space to dwell in how much a situation sucks, is unfair, and/or is any other range of negative or unpleasant emotions. For this reason, I know that this activity as it was designed and carried out also would have faced some constructive feedback and reworking if it were being proposed in the US. But here, every parent was very eager to participate.

Part of me felt a bit shocked observing this activity and how it occurred. Parents started with basic get-to-know you introductions. Then, they all ventured to talking about their child, the medical journey that brought them to that room, and the current situation they were facing. Many tears were shed while speaking. This was transitioned immediately into channeling that feeling of having a difficult time into writing down words of encouragement and positive affirmations for other families who visit the Ronald McDonald Family Room while their child is hospitalized. Not one person in the group protested or found that transition difficult. Envisioning how this would go in the US with my experience, I would have anticipated allowing parents to opt out of this portion, to share something else and not have to remain in the positive, or maybe even just more commiserating between the parents about the shit situation they all found themselves in at the moment. But, that isn't what happened here.

Rather, there was discussion of faith. A mother spent a moment discussing her dislike of people asking "Why me? Why my child?" She responded to the hypothetical rhetorical question by asking "Why someone else? Why another child?" She continued on to say that there is no point in asking those questions but rather having faith that there is an answer to the why, whether it ever becomes apparent or not. She transitioned to discussing the strength and poise of her young child in the months since his cancer diagnosis. She talked about the friends she has made on the oncology ward. She shared her faith that life did not end for her or her son with his diagnosis and this is just another path for her to walk in her life, but she knows that she is not walking it alone.

La Importancia de la Familia y el Acompañamiento Durante Todo el Camino (en la Vida y en la Muerte)

The Importance of Family and Accompaniment Throughout the Journey (in Life and Death)

Many of the parents that I have met have reiterated to me the value that they have found in having a space like the Ronald McDonald Family Room while their child is hospitalized. Not only does the space give them access to a private bathroom, shower, space to rest away from medical stress, and a place to have a cup of coffee or tea and eat a meal, none of which they have access to on the wards with their child, but it is also an area to find connection. A lot of parents and women who work in the family rooms shared that one of the most valuable aspects of the spaces is the ability to see familiar faces, have someone who will ask how they and their child are doing, and give them someone who they know will be there to offer them support during their journey.

In talking with different people here in Chile with experience related to childhood illness and loss, it became apparent that unlike in the US and New Zealand, parental support groups for this type of thing are very rare if not entirely nonexistent. So families access this sort of peer support in places like the family rooms while at the hospital.

Family support and assistance plays a very interesting role too. In general, I get the sense that family is very important here. But, many of the folks who have a sick child do not have the support from their family that they'd like. They do not have the support of a partner, the child's grandparents, or aunts and uncles to lighten the burden - they are navigating the journey by themselves.

But, others do have that help. And to varying degrees. One mother I spoke to told me that while she does not have the support of her youngest child's father or her parents, she gets a lot of help from her other children. Other folks that I met in the family rooms were not the parent of the hospitalized child at all. I met a number of aunts and grandmothers who spent the week days with the child in the hospital because one or both parents needed to work and were unable to be there with them.

A lot of people spoke strongly about the importance of family and their support, whether or not they had it themselves. This is something that I observed continuing after death, when I visited the general cemetery in Santiago. Each grave plot was not marked with the name of an individual person but rather was inscribed with "Familia ..." with a list of names underneath. Families were buried together. One of the graves that I saw had the first death date occurring in 1957 and the latest in 2021. Between those dates, 10 people in the family were reunited in their family plot. If you want to read more about the cemetery, I found this interesting post by another student who visited during a trip abroad too. It includes really fascinating information about the tradition of animitas and a well-known story about one of the graves.

Around the cemetery, there were gifts, flowers, and a variety of other offerings placed at the majority of these graves. This is representative of a believe that is prevalent in much of Latin America, that the dead are still present in the lives of the living.

I happened to be in Chile for Halloween, Día de los Metros, and All Saints Day. In talking with folks here, I learned that unlike some other cultures, Chile does not have its own common tradition for these days. Many families go to the cemetery to honor loved ones. Others have adapted the traditions of other cultures and found meaning in those. From the suggestion of a group of students from the student residence I was living in at the time, I went to the Día de Los Metros Festival hosted by the Corporación Cultural de Las Condes y Embajada de México. That strong connection to family and the continuance of their presence even after death was evident in the festivities and traditions that took places as part of the event.

Remembranza

Remembrance

The final theme that I observed to be very important was remembrance. And this came in a variety of forms. For example, during the activity in the family room with the parents, one of the questions that was asked was how long they had been in the hospital with their child. Not one parent struggled to recall the exact number of days that had passed. They didn't skip a beat in answering. For some, it would seem like this task would inherently be easier, with responses like 2 days or a week. But one mother immediately responded 195 days. Her child had been in the hospital since May and she knew the precise number of days that they had spent the night there together.

Remembrance also came up in more expected ways, such as through memorials. All across Santiago, I have seen memorial sites full of names, candles, and significant items. Now it may just been that I am more acutely aware of these when I see them given the nature of my project, but I feel like I have seen so many here - in places you may anticipate them and others you may not.

One extensive memorial site that really caught my attention was at Cerro San Cristobal. There were photos, ribbons, placards, flowers, and other small meaningful tokens piled on top of each other to honor a loved one who died. There must have been thousands of small memorials all clustered together in this space. Looking closely at the display, it appeared that most of these memorials were for babies and children who died. Strung on this wall were pacifiers, stuffed animals, bids, children's face masks, beaded bracelets, elaborate hair bows, tiny vibrant blue sunglasses, little sneakers, lego mini figures, and so many sun-stained photos of innocent faces.

At the cemetery, I found a similar demonstration of love and remembrance for children and babies who had died. At one plot, I noticed the top of the tombstone engraved with an angel symbol and the birth and death date of a baby who likely was stillborn in 1996. The plot had objects placed on it ranging from items appropriate for a baby (bottles and stuffed animals), to a child (matchbox cars and superhero figurines), to a young adult (mini-bar bottle of Jack Daniels and beer). It is clear that the family has been coming to honor the baby they lost through the years, bringing him items they think he'd like as he'd age and grow.

Relatedly, while in New Zealand, I visited a number of cemeteries as a way to learn about grief and mourning. A few boasted having dedicated areas for infant loss and places to honor loss due to miscarriage and stillbirth. Even in those spaces, I found it relatively rare to see more than a handful of those spaces used as memorial sites. In my exploration of the cemetery here in Santiago, I found many graves for babies that died on the same day they were born or shortly after. Even in years when early infant loss was common and, at least in the US and what I hear to be true in New Zealand too, common advice was to forget about the child by having another and not really speaking about it. But, that doesn't seem like it was or is necessarily the case here. One family grave I found, for example, had 6 names inscribed on it. Four of those were for babies who died before their first birthday.

I've talked with different people here and I've asked about traditions and customs around memorial and remembrance. Every time the response that I have heard was that there is none. I think this may be an instance of it being challenging to see one's own culture when it is just what is common to you.

As an outside, I am able to see practices here in Chile that stand out as unique and powerful forms of grief and mourning. All of this together shines light on perspectives on the nature of life and death, values and beliefs.

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