Tag: child

“A Deep and Hollowing Pain”: Parents Share Stories of Caring for a Sick Child

The article compiles brief quotations from interviews with parents sharing their experiences and lessons learned while dealing with their children’s cancer diagnoses. The parents express the shock and emotional turmoil upon receiving the news, describing the physical and emotional impact of such moments. The struggles include grappling with the unfairness of the situation, the abrupt disruption of daily life, and the challenge of balancing personal well-being with the demands of caregiving.Some parents reflect on how they coped with the stress, sharing coping mechanisms such as engaging in activities with their children, seeking support from friends and medical professionals, and finding moments of joy amidst the pain. The article emphasizes the importance of self-care and highlights the physical toll that prolonged stress takes on caregivers. Although the quotations are very brief, and we don’t know much about the individuals who contributed them, they are interesting to consider as micro-stories or story fragments; taken together, the collection provides varying perspectives and voices of parent experience.

Being Heard: Empathetic Artistic Interpretations of Young People Living with Serious Medical Conditions

The “Being Heard” project explores how artists can help young adults with serious medical conditions feel understood and cared for. Young adults worked with a team that included a nurse researcher from The Institute for Integrative Health, an art therapist/social worker, and two professional artists. Each child wrote an “I Am From” poem and then participated in an interview with an artist, who created a painting and accompanying narrative based on what they heard. The nurse researcher and art therapist then shared the painting with the child, asked for their thoughts and feelings, and offered an opportunity for the child to create a watercolor print.

The exhibition at the Children’s National Medical Center included eight paintings by patients between the ages of 10 and 19; the booklet from the show also includes the art work, poems and children’s responses.

The Washington Post ran a story on this project, available at this link.

Children’s art as visual narrative

This article about visual narrative highlights the effectiveness of non-verbal expressive arts like drawing, painting, and constructing as therapeutic and restorative experiences. Trauma survivors, including children, may find it challenging to articulate their experiences verbally, as trauma can impact the brain’s language centers. The article contrasts previous approaches that encouraged forgetting traumatic events with the current understanding of the importance of acknowledging, validating, and providing mental health intervention for survivors, allowing them to tell their stories through creative acts. The article references the project “Forced to Flee: Visual Stories of Refugee Youth from Burma,” which compiles a book of art expressions by young refugees (a page for the kickstarter campaign for the project was available as of 12/20/23 at this link). The project showcases how visual narratives, conveyed through art, can tell powerful stories, open hearts, and build bridges of understanding. By honoring the visual narratives of youth, the project not only raises awareness about human rights issues but also offers a glimpse into possibilities for reparation and redemption for young survivors.

A Lion in the House

“A Lion in the House” is a 3-hour and 45-minute long documentary about childhood cancer available on Netflix. This emotional and powerful documentary follows the lives of five children battling cancer and spans over six years. The film provides an intimate and unfiltered look at the challenges faced by the young patients, their families, and even the healthcare providers caring for them. Some of the challenges addressed in this film include parenting a sick child, experiencing pain and isolation as a sick child, financial struggles as a family fighting illness, and the toll childhood illness takes on physicians’ emotional wellbeing.

Using storytelling and candid interviews, the documentary explores the complex emotions of grief, sadness, hope, and so many more that arise when confronting a life-threatening illness like cancer. Viewers will gain insight to the multi-layered challenge that cancer is, confronting topics of decisions surrounding death, pain, isolation, friendship, and financial stress. The openness of this film reveals the difficult decisions cancer brings, especially when choices have to be made for a child. This film is a very moving and real portrayal of the waves of heartbreak and hope that come with childhood cancer. This film is unique as it shares the perspectives of everyone involved in the process of treating cancer and could be used in any course interested in working with a very raw personal narrative. One example of a contrast revealed is the different challenges faced by parents, children, and physicians. Children experience the pain and loneliness, parents have to make life-changing decisions for their children, and physicians have to inform about and execute treatment plans taking into account both physical and emotional limitations. Because of the many perspectives shared, it could be a useful film for healthcare students or for any students learning about childhood illness, death and dying, and approaching medical care holistically. Additionally, it raises questions regarding consent and making medical decisions for children, and could be used in a course surrounding medical ethics.

One of the stories told in the film is the story of Tim, who was diagnosed with Hodgkins Lymphoma. Tim is a vibrant and spunky fifteen year old who’s symptoms were initially brushed off by physicians. He had a persistent cough and swollen lymph nodes, and was eventually emergently rushed to the hospital, where he got his diagnosis. Tim has a large family, living with siblings, extended family, and his mother, Marietha. In his teen years, Tim says that he enjoys all of the attention he gets because of his diagnosis, and is resistant to take his medications and listening to his mom and team of physicians. A nurse explains that by not listening, Tim is upholding his “cool” image, and eventually needs a nasogastric tube because of it. On top of his lymphoma, Tim lost his father, which his psychiatrist explains has really limited his social life. Through everything, even a period of his cancer worsening, Tim persists and remains joyful. Eventually, Tim joins a school program for students who are behind, like him, and begins a job at McDonalds. After a special trip that he and his mother take to Chicago, Tim becomes incredibly ill, once again. Resistant to the chemotherapy, his condition worsens, and he becomes worried about his death. Tim ends up dying, and the film covers his medical team and family’s grappling with his death. Tim’s story, specifically, is complex and could spark conversations on ethics, facing death as a young person, balancing being a teen and being sick, parent loss, single parenthood, as well as why his story, like others, is an important one to be told.

My Sister’s Keeper

“My Sister’s Keeper” is a fictional story written by Jodi Picoult. It revolves around the Fitzgerald family, whose lives are profoundly affected by their daughter Kate’s long-term battle with leukemia. In a unique ethical dilemma, the parents conceive another child, Anna, specifically to serve as a compatible donor for Kate. As Anna gets older, she becomes increasingly aware of her role in her sister’s medical procedures. At a certain point, Anna decides to sue her parents for medical emancipation, seeking control over her own body. The story follows the legal battle alongside a struggling family trying to make Kate’s life as good as possible. This combination brings into light the complexities of love, sacrifice, autonomy, and the implications of using one child to save another. This novel explores these issues through the perspective of every character, including the attorney. The mother’s perspective explores grief, strength, and the need to fight for one’s child’s life no matter what. The father’s experience shows an example of someone who wants so desperately for his daughter to live, but also wants to protect the autonomy of his other daughter. The brother’s perspective tells the story of a boy who feels neglected in a family focused on a cancer diagnosis. The two sister’s go back and forth in caring for each other, and it becomes clear through this dialogue that Anna is suing her parents at her sister’s request, as her sister is ready to die. And the attorney, who suffers from epilepsy, explains his support for young Anna, despite her parent’s anger, as he knows what it’s like to not have control over his own body. The combination of perspectives explores the moral issue of bodily autonomy as deeply complex and woven with people and choices to listen to. This novel could be used in classes on medical ethics, as it raises a complex story full of moral dilemmas surrounding medical decisions and familial relationships in the face of childhood illness. It prompts conversation surrounding parental authority, blurred lines between love and autonomy, and childhood cancer.

Specifically, this story shows how cancer can affect a family, touching each person so uniquely. Kate, after a whole life of fighting, was ready to let go, whereas her mother would do anything and everything to keep her alive. Anna was happy to donate blood and organs to her sister, but sued her parents to honor her sister’s wishes, even though she lost her parents’ trust. And the attorney gives an example of when it can be important to support and listen to a child, even when their parents don’t agree. This film highlights that cancer and organ donation are not straightforward issues, and sometimes a person’s wants are contrary to the common narrative.

This book is a longer read, and it is such a complex story, which makes it difficult to break apart for shorter sections, but there is a wonderful film adaptation that could be watched in a class period. The book and film are slightly different, but all of the relevant topics and questions remain. An interesting assignment could be having different people read different perspectives and discuss what their assumptions about the other characters would be after only reading from one point of view.

The Boy in the Moon: A Father’s Journey to Understand His Extraordinary Son

“The Boy in the Moon: A Father’s Journey to Understand His Extraordinary Son” by Ian Brown is a deeply personal memoir that chronicles the author’s experiences with raising his son, Walker, who was born with a rare genetic disorder called Cardiofaciocutaneous Syndrome, or CFC. The book explores the challenges, joys, and complexities of caring for a child with special needs. He explains that his son sometimes feels like the man in the moon, and he knows there is no man there. This book chronicles his exploration of why his son, then, feels so important to him. He explains how deeply he wants to know his son’s thoughts, but this question always brings him back to what goes on in his own head. Specifically, he brings up issues of the child he thought he would have had, what a normal childhood looks like, what a normal parenthood looks like, and the grief (and joys) of having a child who is not like other people. He explores, too, how amazing and perspective-changing it can be to love someone who has unique medical needs and functionality. He feels very thankful for his life with his child, despite the challenges. Brown shares the intimate details of their life, discussing the impact of Walker’s condition on daily routines, relationships, and perspectives on parenthood. He discusses how he spends much more time with his child, and contemplates the fact that Walker cannot be independent or grow into independence like other children. He learns that love and parenthood is unconditional, and how to love someone who can’t form relationships the same ways as many people do. The narrative delves into the medical aspects of CFC, as well, spreading awareness about this disorder. As Brown grapples with the emotional and practical aspects of caring for Walker, he also reflects on the broader themes of disability, acceptance, illness, and what it means to be a father.

This memoir could be used in a class interested in discussing the implications of illness and disability for a family. It addresses the complexities at home caretaking and a rare condition, making it a good book to read for students wanting to understand home care and disability in childhood. Classes hoping to engage with first-person narratives addressing childhood illness could also use this book as an example of a caretaker’s narrative. With this, individual chapters of this book could be used to explore the questions this story raises. Brown’s writings, at any point in the story, could be discussed and used in a class discussion.

Even Superheroes Get Diabetes

This book can be purchased at book stores or online. Alternatively, there is a free reading of the book on youtube at this link: https://www.youtube.com/watch?v=w5uKTvYN6bw

“Even Superheroes Get Diabetes” by Sue Houle is a unique comic book that tackles the topic of diabetes in a creative and relatable way, especially for young readers. The narrative is presented in a comic book format, adding an engaging and visually appealing element to the story.

The protagonist of the book is a young boy who discovers that even superheroes can have diabetes. The story unfolds as the boy learns to navigate life with this condition, and the narrative is paired with many superhero-themed elements, making it both entertaining and informative.

The book not only addresses the practical aspects of managing diabetes, such as monitoring blood sugar levels and taking insulin, but also goes into the emotional and social aspects of living with a chronic condition. It explores the life of the young superhero, such as explaining his condition to friends, dealing with potential misconceptions, and finding the courage to embrace his unique identity. Throughout the story, the author incorporates valuable information about diabetes management, making it an educational resource for both children and their parents. The use of superheroes as characters helps destigmatize diabetes, showing that anyone, regardless of their abilities or strengths, can be affected by the condition.

Overall, “Even Superheroes Get Diabetes” is both a heartwarming and empowering book. The creative storytelling approach, coupled with vibrant illustrations, makes it an excellent tool for raising awareness and fostering understanding about diabetes among children and the broader community.

This comic could be used in classroom settings for pre-med and public health students to learn about the impacts of creative narratives, especially when interacting with children. This provides a unique type of narrative that can be analyzed visually alongside a discussion of the content. It can raise questions about effective forms of communication with children and their parents and emphasizes the role of art in narrative medicine.

Hyperbole and a Half: Unfortunate situations, flawed coping mechanisms, mayhem, and other things that happened.

This is a graphic memoir written by a comedic blogger, divided into chapters that retell various life experiences in words and digital drawings, ranging from sibling relationships to unruly dogs to childhood memories to unconventional methods of dealing with depression. Brosh has experienced depression throughout her life, and this is a topic she digs into candidly in her book.

Selected chapters of this book could be used as brief, accessible readings in a class on mental illness or in a training for health care providers. A follow up assignment could invite students to make graphic narratives of their own and could invite discussion of how humor can be used to make difficult topics less taboo.