Theme: Palliative Care
First published on ehospice.
When my daughter was diagnosed with a rare and life-limiting condition, my world changed in an instant. I was thrown into an unfamiliar place that I did not recognize—a world of uncertainty, fear, grief, and helplessness. As a father, I felt an overwhelming urge to fix it. That is what we do, right? We solve problems. We protect. We provide.
But what happens when the problem is your child’s illness—and it can’t be fixed?
I learned, painfully and gradually, that many fathers face this same moment. A child receives a devastating diagnosis, and suddenly everything you thought you were supposed to be—strong, stoic, solution-oriented—no longer fits. You are left standing in the middle of a storm with no map and no tools. Just love. And fear. And questions you cannot answer.
Pediatric palliative care helped me find my footing in that storm. No, it did not offer a cure. But it offered something else: a way forward. A way to be a father in the face of the unimaginable.
I was raised in a culture where men are expected to be fixers. When that instinct meets an illness that has no fix, it can shatter your sense of identity. I asked myself, “What did I miss?” “Did I do something wrong?” “Am I strong enough for my family?” These questions haunted me. And like so many fathers, I tried to hold it all in—to be “the rock” for everyone else. But that silence was not strength. It was suffering.
And that’s where palliative care came in.
Pediatric palliative care is not just for the end of life, it is whole-family support that starts at diagnosis. It is a team approach, with doctors, nurses, social workers, chaplains, and psychologists who are not just treating the child, walking alongside the entire family. They helped me make sense of what we were going through and gave me permission to feel what I was feeling.
They also helped me redefine what it meant to be a father during that time. I did not need to have the answers. I did not need to be strong in the traditional sense. I just needed to be there. Holding my daughter’s hand. Reading her a book. Sitting in the quiet moments. Advocating for her comfort. Loving her with everything I had.
That shift—from fixing to being—was the most profound transformation of my life.
Palliative care also helped ease the isolation I felt. As a father, I did not always have the same kind of built-in support network that my partner did. I did not know where to turn, or who would understand. But through counseling, peer support, and simply being invited into conversations I might have otherwise been left out of, I began to feel seen. Heard. Connected. Hearing another dad say, “I feel that way too,” changed everything.
My daughter passed away when she was four years old. That pain will never go away. But I will always be grateful for the support we received through palliative care. It did not remove the grief—but it gave me purpose. It helped me understand that love is not about fixing; it is about showing up every day, fully present.
Pediatric palliative care is not a cure—but it is a lifeline. For fathers especially, it provides a space to feel, to connect, and to redefine what strength looks like. We may not be able to fix everything—but sometimes, the most powerful thing we can do is simply be there. And in the end, that is more than enough.
Theme: Palliative Care
First published on ehospice.
In my professional life, I have led numerous meetings, many of them with pivotal decisions or necessary outcomes, but never have I felt such great mental and emotional weight as at the initial care conference with my firstborn’s medical team. The experience came while my daughter was in the NICU for almost a month after a non-eventful pregnancy and a smooth delivery. After a surprise rare genetic diagnosis and prolonged breathing tube placement, our family was eager to discuss the direction of our daughter’s care.
A care conference is a meeting of the patient and family with the health care team. Care conferences are often convened when a hospital stay is long, there are complex medical problems or something in the patient has changed unexpectedly.[1] I first learned about the concept of a care conference from our palliative care team, who recommended we initiate one after multiple failed breathing tube extubation attempts. Instinctually, I knew we needed this meeting, but I was nervous because I understood it would set the direction for my daughter’s care, and the outcomes of the meeting could impact my family significantly. I was also nervous because I didn’t know what questions were reasonable to ask, and I did not know if the busy clinicians would think it was a waste of their time for me to ask questions like when/whether my intubated one-month-old would be able to receive physical or occupational therapy. I felt inadequate because I thought I was supposed to “own the meeting” because it was about my child. Fast forward five years and nearly a dozen care conferences under my belt, I still feel nervous for similar reasons. Luckily, our palliative care team always makes me feel it is reasonable to request a care conference and reminds me that my questions – big or small – have a name – advocacy.
At my first care conference, I leveraged my professional background to develop an agenda. I included a title, the time and place, and the attendee list. I included our top priority questions and listed secondary questions. I usually don’t add colors to the agendas, but I chose a colorful template. After all, this wasn’t an ordinary meeting, and having an organized agenda with a bit of personality increased my confidence as the meeting approached. If I could not control the outcome of the meeting, at least I could control the color of the agenda. To this day, I still follow a similar structure, even when we have the conference as an outpatient.
But truthfully, having the “perfect agenda” does not always quell my worries. Recently, we held a care conference with nearly 30 participants. I still felt nervous, even though we have a trusting relationship with everyone who attended the meeting. I experienced the same feelings of inadequacy and prepared hard for weeks on how to run the meeting effectively, especially as there were many issues to address in only an hour. With such a large group, I wanted to include a lot of contextual information in the agenda so everyone could have a fair view of my daughter’s quality of life. I even planned to bring treats for a virtual meeting – a positive addition to the meetings I implemented early on. But in all this planning and self-imposed pressure to run the leanest care conference for a dynamic, thriving individual with very complex medical needs, I forgot to give myself heart space to be her mother—a mother who has gained so many caregiving and care conference skills but also has scary memories of my child nearly dying multiple times. I began to realize that if I didn’t give myself the heart space to be a mother who cannot control the outcomes, my head space could be too full and chaotic to be the parent my daughter needed me to be present with her for the time we do have together.
To help me declutter my mind, sort my emotions, and find space to be my daughter’s mother first and her care coordinator second, I once again turned to our palliative care team. Our palliative care doctor and nurse allowed me to talk through the topics I wanted, not expecting my thoughts to be neat or structured. They met where I was – not just emotionally but literally – my daughter was in the CT scan room under anesthesia, and they came to find me in the waiting room. They even walked with me to a nearby eatery after they learned I had skipped breakfast to get my daughter to the early morning appointment. They allowed me to feel comfortable, both physically and mentally. And in that comfort, I was able to narrow down what I wanted to cover, prioritize agenda items, and worry less about being the perfect meeting organizer.
Experiencing a care conference is something a parent rarely forgets, regardless of how many times they attend one or how familiar they are with the medical system.[2] Understanding the special emotional weight care conferences carry for parents is a critical piece of the effectiveness of a care conference. I am fortunate to have our palliative care team to process with and walk alongside me as I face all my daughter’s future care conferences.
[1] Nationwide Children’s Hospital. Care Conferences for Families. https://www.nationwidechildrens.org/family-resources-education/health-wellness-and-safety-resources/helping-hands/care-conferences-for-families
[2] Palliative care: I was able to unburden my worries to one person … and then the care conference allowed us to talk about everything. CPN. (n.d.). https://courageousparentsnetwork.org/videos/palliative-care-i-was-able-to-unburden-my-worries-to-one-person-and-then-the-care-conference-allowed-us-to-talk-about-everything
Theme: Palliative Care
Each morning begins in the small sensations that remind us we are alive.
The bubble of the kettle. The smell of coffee. The way light catches the rim of the mug, making even the ordinary seem briefly radiant. These are moments that belong wholly to the inside of our experience. We feel them before we ever name them. The warmth against our palms, the hum of a refrigerator, a child’s distant cough in another room. All of it arises in sensation before thought can measure or assign meaning.
And yet, we are never only inside. Coffee is a compound of molecules; that light is a frequency; that coughing can be plotted as sound waves measured in decibels. We live, always, in this doubleness, moving between the world as it feels and the world as it is recorded. We live in a body that aches, stumbles, delights and then we invent the abstractions that allow us to make sense of what the ache or the joy might mean. Between these two is the tension of knowing we can never live entirely in either space. We are tethered to changing sensation just as we are ever compelled to find static language for our senses.
Perhaps this oscillation between immersion and distance, heartbeat and calculation is what makes us human: we are the creatures who measure what we feel and feel what we measure. It is in moments of extremity where we find that measuring either side becomes difficult.
Exploring this tension, philosopher Thomas Nagel once wrote about what he called the view from Nowhere. It’s an impossible vantage point where one sees the world stripped of all subjectivity, rendered in pure, detached clarity. From such a height, emotion and circumstance fall away; all that remains are facts, patterns, causes. Against this, there stands the view from Here with its thick, gauzy embodied immediacy of our personal lives, from which every sound, texture, and heartbeat is felt before it’s understood. The view from nowhere seeks precision and coherence. The view from somewhere clings to meaning, to what it feels like to be a person in a body, loving another person in theirs.
Both views are real, but they speak different dialects. We spend our lives crossing the invisible bridge between these two, wanting to know what’s true, yet unable to let go of what’s ours.
For parents of medically complex children, this tension becomes more than philosophical. It almost becomes the air we breathe. What’s more, we can never rest fully in either. The Here demands tenderness and attention, the kind that can feel the weight of her trust as she melts into your arms. This is the precious ground that friends, family, and fleeting visitors get to stand on. Holding a hand or singing a song, with love unburdened by the brutal calculus of a medication schedule or the terrifying consequence of waiting too long into a seizure to give oxygen. Then there is the Nowhere, which pulls just as hard, insisting only on the cold, unblinking precision of milligrams, milliliters, and flow rates. This is the domain of the provider, where the body is viewed through the necessary lens of protocol and data. Both places, populated by both peoples, are necessary.
To parent a medically fragile child though is to live on the fault line between love and logistics, between the memorable and the measurable. We are forever translating, reading the body as data and the data as life. Always feeling so burdened to find answers in order to make the right decisions.
It is exhausting.
Each step further into the dark brightness of medical parenting feels like an ascent up the mountain into the cloud of unknowing. A climb into thinner air where what once seemed solid begins to shimmer and blur. The higher we go, the ground of the everyday where we once believed love and reason could coexist without fracture begins to erode, and more distance stretches between the Here and the Nowhere.
This widening itself isn’t a problem. All parents, in one form or another, live within the tension between presence and abstraction. We watch our children play, delight in their laughter, then measure their growth on a chart and calculate hours of sleep or minutes of screen time. With enough community, family, and practical support, this balance holds. But for parents of disabled, medically complex, or fragile children, the gap widens until the span feels unbridgeable. Sustaining both perspectives can stretch even the most resilient heart past what ordinary networks can hold. The oscillation that once felt like breathing begins to feel like gasping.
When the ground between Here and Nowhere begins to quake, what parents need most is not to choose a side but to find a companion who can walk the fault line with them. And for parents like us this guide is Pediatric Palliative Care.
Unfortunately, many of those who could benefit from palliative care enter into it too late, often because palliative care is often misunderstood for hospice. However, its most powerful role begins at the moment of diagnosis and especially whenever the medical complexity starts to cause significant family strain, regardless of prognosis.
Its work is not to collapse the Here and Nowhere, but to reveal their interdependence and to steady the traveler caught between them. It does not dissolve medical demands—the Nowhere remains—but what it does is gently make room for the Here.
Neither the Here nor the Nowhere is sufficient alone. The child’s life insists on both.
If you find yourself constantly translating data and gasping for breath, remember that seeking palliative care is not a failure but an act of self-preservation that will help medical precision to become a form of care, and tender presence to become a form of healing.
It is love learning to breathe again.
Stephen Hager goes by his second middle name (he has three), Bud, because it’s easier to remember and baristas never misspell it. Along with his wife he is a caregiver for their 8-year-old daughter, Emma, who has pachygyria, a rare neurological disorder. He believes in taking an active approach to advocating for his child and others like her. To this end, he sits on various advisory councils at Children Hospital of Orange County (CHOC), volunteers on consulting and directing boards for various non-profit centers and lends his writing skills where he can. Experiencing a lack of support for parents of medically complex children, Bud founded a support group through CHOC focusing on parent-to-parent interaction. He is also a professor of psychology and has a small private psychotherapy practice.
Theme: Palliative Care
Parent Champion Kelsey Stanczyk, Parent of Stella
Stella was diagnosed as a newborn with Ring 9 Syndrome and Microduplication on chromosome 17. She died at age 23 months.
Kelsey’s 6 words: Palliative care gave my family peace
Theme: Palliative Care
Parent Champion Aisling Melton, Parent of Éabha
Eabha was diagnosed at age 10 with a stage-4 diffuse midline high-grade glioma, and died at age 12.
Aisling’s 6 words: Because Éabha Grace Melton deserved better
Theme: Palliative Care
First published on ehospice.
Hi, I’m Soraya, and I’m 13 years old. I’m a kind and trendy girlie who loves a lot of things! Some of my favorite interests are playing games on my computer and iPad, playing with dolls (especially with my babysitters), my nails, reading graphic novels, and shopping for make-up. I also really love spending time with my friends and family—we like watching shows together and listening to music. That’s when I feel happiest and most like myself.
What makes me “me” is the way I connect with people. I feel people’s emotions deeply, and I always try to be kind and thoughtful. Even though I have a lot of interests and fun things I like to do, lately my body has been getting too tired to do everything I used to. But I still try to enjoy every moment and focus on what really matters—being with the people I love.
I have a medical condition that I’ve had since I was born. The doctors don’t know the exact name of my disease, which can be frustrating. It started with trouble eating when I was a baby, so I got a G-tube to help me eat. When I was younger, I could walk and run, but a couple of years ago my body started getting weaker and more tired. I began needing a BiPAP machine to help me breathe, and a wheelchair to get around. Now, my muscles are getting tighter and weaker, and I’ve been feeling a lot more pain throughout my body. I have a lot of medical symptoms, and while I know I’m dying sooner, I don’t know exactly when.
I’ve been working with a pediatric palliative care doctor for about three years now. Their job is to help me feel as comfortable as possible and support me and my family through everything. One of the biggest ways they’ve helped me is with pain management. Because of them, I’m still able to do some of the things I love without being overwhelmed by pain. They also help my parents come up with ideas to help me conserve energy.
One really helpful thing they did was talk to my teachers when I wasn’t being understood at school. My doctor explained that I’m dying sooner, and it helped my teachers understand my situation better. That made a big difference.
The palliative care team has also brought so many people into my life who support me and my family in different ways. There’s a massage therapist who helps me feel better physically and mentally. One of the very first things they did was help us apply for Make-A-Wish. I got to surf in Hawaii, which was incredible, and we made the most special memories together as a family. They even let my sisters come to appointments and ask questions—they know my sisters worry about me too. The music therapist plays calming music that I love, and the child life specialist does fun activities with me and my sisters. There’s also a chaplain and social worker who really support my parents. And I have a few favorite nurses who check on me regularly.
One time that palliative care was especially helpful was when my doctor came to visit me at home. I have so many doctor’s appointments that they really wear me out. Having my palliative care doctor come to my house was so comforting. They got to see my family and meet my pets, and it made things feel more personal and less stressful. Even though we had to talk about hard stuff, it was so nice to have that visit at home. I really wish more of my doctors could do visits like that.
Palliative care also helps me feel like myself and helps me do the things that are most important to me. They let me make decisions about my own care, which makes me feel in control. For example, recently I was getting too tired to take showers every day, but I felt bad about it. My parents weren’t sure what to do, but the team helped us decide that sponge baths are totally fine. That made a big difference in how I felt—more relaxed and understood.
Also, chewing and swallowing has been getting harder for me. Normally, I would have to do a swallow study, but I really hate the contrast taste and those tests are hard for me. The palliative care team supported my decision not to take the test. Now, I just eat what I want, when I want, and enjoy food without worrying.
Palliative care helps me be myself, stay comfortable, and spend my energy on the things I love most. They make it possible for me to keep living my life in the most meaningful way I can.
Theme: Palliative Care
On the night my son is born, he is whisked away by ambulance to Children’s Healthcare of Atlanta five miles east. We are in two separate hospitals. My son is with his father, in the Cardiac Intensive Care Unit. When our son is admitted to the new hospital, the protocol dictates he have a name. However, it isn’t until the next day, at my discharge from the birthing hospital that we legally name our second son Cortland Richard Carmona, Jr. or, CJ, after his father. But, at this point, it’s too late. The hospital has given him a name:
Babyboy.
This is the same baby boy who has several medical anomalies: who becomes a living textbook for the providers seeing the anomalies in real time, in real life. He is the same baby boy who is hooked up to machine after machine to stay alive.
I gaze down at his miniature orange foot band and think, “How convenient for him to be a Babyboy. There is nothing personal, nothing human in simply naming him Babyboy.”
During doctor rounds, I hear “Babyboy Carmona. Hypoplastic” and the nurses cosign injections reading off “Babyboy”. And in the weeks that follow, medical bills for “Babyboy” flood our mailbox.
“Babyboy” is all around me fueling a fire of rage inside me. See, it takes some rage to be courageous. Love requires advocacy.
That baby in the incubator isn’t any baby boy. That is my son. His name is CJ. He is strong. He is brave. He is loved.
I interrupt doctors in rounds, correcting each “Babyboy” with CJ. I make a giant CJ sign and hang it in the entryway of his room, so everyone knows who lives here. I decorate his hospital room with family photos, art, and decorations with his name. I request a new hospital bracelet with CJ inscribed on it. I make my way through CJ’s chart permanently changing his name.
CJ becomes known. No longer “Babyboy” but our beautiful son courageously fighting for life.
Looking back, changing CJ’s name during his stay at Children’s was my first real act of courage as his parent. It took many conversations, small acts of advocacy, and the kindness of our care teams to make that one change. In the process, I quickly learned that loving my son meant speaking up and out when even the smallest detail wasn’t right. Eighty-four days in the hospital transformed our family into a powerful force of love and advocacy for CJ.
Our greatest act of advocacy came after working with the PACT team to find our voice and the words to say “enough” to his medical team and bring him home on pediatric hospice care. For us, it was the best (albeit the most painful, selfless, and heartbreaking) act of love and advocacy. CJ could be fully himself – no longer a living textbook – just my medically remarkable, second born son, CJ at home with his family where he always belonged.
For our family, quality of life was more important than the number of days he might stay alive in a hospital room. Ultimately, we did not want CJ to die in the hospital. We believed death offered peace to his suffering that no provider could bring. We had 15 beautiful days at home with CJ. He died at the end of May 2021.
In the days, weeks and months following CJ’s death, I lived in the aftermath of what all felt like a dream. Or, a nightmare. It seemed everything moved slower, time stopped, and our world stood still.
In the hospital, we were told by so many how selfless, brave, and courageous we were. It seemed to me we were making history. When I asked if there were other families I could connect with who made similar choices, there didn’t seem to be any they could connect me to.
I went on Facebook groups asking if other families had children on pediatric hospice care. Very few did. After feeling more alone and frustrated than ever, I finally found the Courageous Parents Network.
I couldn’t believe it! Here were other families thinking the same things I felt in the hospital. Here were the resources I didn’t even know I needed. Here were stories of families with other very sick children and of bereaved parents like me. Here my family belonged.
In the fall after CJ died, I had my first encounter meeting someone new; someone who did not know my family with CJ. When she asked how many children we had, I lied. I said one because I had only one living child. The guilt and grief that ensued from that conversation wrecked me. I turned to CPN.
I watched every video in the bereavement series. I saw firsthand how confident many of these bereaved parents spoke of their late children; the unabashed love pouring from my screen affirmed my own feelings. It was through CPN that I learned to always tell the truth: one person’s momentary discomfort is not your lifelong ache.
I sent the videos to another friend who also experienced child loss. Together, we made a pact to always include our children – whether in conversations or Christmas cards. If I don’t talk about CJ, who will?
Because of this community, we will always include CJ in the tally of our children. This is the community that is brave enough to talk about the pain, the hurt, the loss. This is the Courageous Parents Network.
Kasey and Cortland Carmona of Atlanta, GA are the proud parents of two boys. Their first son, Teddy, was born in February 2020. Three months later, they found themselves pregnant with their second son, Cortland Richard Carmona, Jr. (CJ). CJ was prenatally diagnosed with Hypoplastic Left Heart Syndrome, a congenital heart disease in which only half of the heart is formed. Unbeknownst to the family and care team, when CJ was born on February 15, 2021, he had many congenital anomalies affecting every body system. A genetic workup revealed Kabuki Syndrome, a rare syndrome caused by a gene deletion.
After 84 days in the hospital, the family worked with the Palliative Care team to bring CJ home on pediatric hospice care. In his 15 days at home, CJ experienced the best of life: stroller races with his big brother, piano serenades by his dad, morning snuggles in the sunshine with mom and a glorious homecoming party with extended family. CJ died on May 25, 2021. The Carmona family is forever grateful for the beautiful life and death of their son CJ.
Theme: Palliative Care
My son found a broken dinosaur mood ring in the bottom of a drawer as we were cleaning his room. We had purchased it for his brother Roman years earlier at a dino exhibit happening in our city. His brother was still alive at the time.
Roman traveled to the exhibit in his wheelchair with tanks mounted on the chair’s back that supplied his air with a hiss. Alongside the tanks was a beeping oximeter strapped on using the same bungee cord his dad used to secure his helmet onto his motorcycle. The chair bogged down by other medical equipment–suction machines, sterile water, a feeding pump and extra doses of medication for pain–created an island of “life accessories” surrounding a little boy with cherub cheeks and light blue eyes. Leaning forward, I pushed hard on the heavy chair as I turned the corners of the convention center’s dino exhibit. I navigated the terrain as nimbly as the strollers with uninhibited toddlers in them. My older son briskly ran ahead with his Nana in tow. Her wallet was ready to supply bills for souvenirs; the plastic junk that holds the memories of family outings.
For every family, finding things to do together to make childhood memories can feel like an administrative job for parents at times. Search the events, buy the tickets, pack the diaper bag, and make sure the phone is charged for pictures to document it – photos that can be used for future graduation party collages, social media posts, and reminders that our children were once young and innocent. When your child has a shortened life expectancy, the photos serve a different purpose. They are proof that they were here and lived a life with you by their side. Each outing carries a different, greater weight. For my Roman, this meant the physical weight of his chair, the weight of worry that something may go wrong while out in public, as well as the pressure to make lasting memories.
Our outing checklists were long and included setting our phone alarms to remind us of medication times and making sure to remember the oxygen tank “key” that opens fresh tanks. Once forgotten, a “key” was now in every extra pocket imaginable. Forgetting a medical item with a medically unstable child isn’t like forgetting diapers and stopping at Target on the way to pick some up. It could mean an immediate exit and stressful ride home for relief or worse, a 911 call. The potential drama and weight of perfect planning made every family outing a carefully orchestrated event.
Having the bandwidth to execute a safe and worthwhile family outing also included a flurry of questions. Was this a winter event in the middle of cold and flu season? Had he just recovered from a respiratory virus? Was the risk of infection worth the memory making we would be doing? Worth the stress? Could we pay attention to big brother?
Even when I had meticulously planned an outing, packed, potentially scheduled a nurse or additional adult with medical skills to accompany us, weighed the pros and cons, there was a new kind of pressure. The pressure to not just GO but to make it SPECIAL. Knowing your child has little life to live, you have the added pressure of making every trip to the pumpkin patch magical. I accrued photo ops with determination as I bowled people over with a hefty wheelchair, a smile and sweet “excuse me.” When your child’s health is delicately balanced between fragile and “touch and go,” seizing stable days when the stars align with low virus levels, comfortable temperatures and a fun event feel urgently necessary.
Each memory captured in photos is two-dimensional proof that I did my best. If I could do it over again, I would do more. But that careful dance of risk and reward was never easy to navigate and so I give myself grace. My overprotective nature probably kept us from some events that would have been just fine, but it also may have kept him here longer and I would have walked on my hands to get a few more months. Sometimes it felt like I was in fact, inverted.
If I could go back in time, I would have told myself that I was adaptable and competent enough to leave the safety of home and make more memories. This might sound like silly advice especially to naturally easy-going individuals, but for those type-A parents out there feeling intimidated by the burden of living in constant fight or flight, waiting for the next medical emergency know that it’s ok to relax. You will be competent in a relaxed state.
We were lucky enough to receive palliative services early in his life. This meant I felt like the CEO of a multidisciplinary team that had been assembled to make my child’s life full of quality filled days even if it sacrificed quantity.
I remember calling the palliative nurse soon after first receiving services. The novelty of having an on-call number provided to us was still there. I felt guilty as I called the nurse’s cell to ask if we could go to the park or if she thought he was too unstable to make the trip. Thinking it was less important or that I was bothering her because it wasn’t about medication. “I would be disappointed if you didn’t take him to the park,” she said, “and don’t apologize for calling, that is what we are here for.” They gave us the tools to embark on our memory making adventures. It also allowed us to have support at home if he came home from an event in slightly rougher shape than when he left.
Kids seem to have a well of “oomph” to draw from to do the things they want to do. One Halloween, my son was having a hard time breathing and looked exhausted. His older brother, dressed in his Harry Potter outfit came into the room and asked if Roman would be able to join in trick-or-treating after dinner. I looked at his sweet face and at his brother and then back at him and shook my head no; disappointment clearly palpable between the two of us. But also noticeable was a look in Roman’s eyes. He perked up just the tiniest bit and for the next hour and a half his troubling symptoms ceased. I tentatively pulled on the fluffy owl costume over his clothes and tightened the cannula under his hat. His big blue eyes begging to go. I loaded him up and caught up with his brother and dad down the street running from house to house to get candy.
Know that if you can’t muster the energy to do something grand and carry the weight today because the pressure is too much, that’s ok. You don’t have to try too hard, memories of skipping the event and staying home will be just as precious.
But heck, now, when my son wears the mood ring from the dino exhibit it is so much more than a trinket bought by Nana. It is proof that we LIVED together. My son told me the tail of the brachiosaurus is broken, it stays black while the rest shifts, swirling with heat radiating blue, green, and purple. I replied with a little sadness in my voice knowing its importance. He said, “that’s ok. It’s right, I feel mostly happy but always with a little sadness because Roman isn’t here anymore.” An eight-year old’s wisdom, more concise and profound than mine. But he was here, and we pushed through the weight of it all to make some everlasting memories.
Kaitin Kelly Benedict is a former professional dancer who now only does pliés in her basement. She believes strongly in the health benefits of movement and creativity and has taught wellness classes for artists in the community, public schools, and at the university level. After the traumatic birth of her second son in 2017, her days were spent running an ICU out of her home and running to medical appointments. Since his death, she has redirected her focus toward embarking on a master’s in social work. Kaitin has always loved writing and particularly loves writing about her son Roman. She is also published in Months To Years literary journal.
Theme: Palliative Care
Theme: Palliative Care
A palliative care doctor describes how she enters the room and makes the connection with the patient and family.
Theme: Palliative Care
Dr. Johnson describes her journey to choosing pediatric palliative care – from a focus on maternal/child health and OB/GYN to widening the lens to whole family care and tending to family well-being in the context of serious illness; and then the role a mentor played in shepherding her into palliative care.
Theme: Palliative Care
Los cuidados paliativos ofrecen un apoyo invaluable a los niños y sus familias, independientemente del pronóstico, al enfocarse en mejorar la calidad de vida mientras se maneja una enfermedad grave. Es importante destacar que los niños pueden recibir cuidados paliativos junto con tratamientos curativos, comenzando desde el momento del diagnóstico y continuando durante el tratamiento y más allá. Esta Guía proporciona una descripción general de los beneficios de los cuidados paliativos en oncología pediátrica, ayudándole a comprender cómo pueden marcar una diferencia significativa.