Author: Alison

We have been told that to be resilient is to stand apart. To weather the storm unmoved, to endure without breaking, to carry the weight without complaint. Fathers especially are given this story. The good father is the oak: tall, steady, admired precisely because he does not need to lean. He shelters others but never asks to be sheltered. His strength is measured by how little he requires.

This myth has a certain beauty to it. We do not carve statues in the shape of vines; we carve them to look like pillars. All that is soft is gone, what remains is that which is hard or has been hardened. And yet, when you live long enough inside the weight of grief and care, the myth begins to feel brittle. A father who cannot bend, who cannot admit need, eventually snaps. The oak rots from the inside. The story I inherited about resilience has left me lonelier than I know how to name.

I did not really begin to question this until I found myself sitting at my daughter’s bedside, watching her chest falter in the dark. One breath would come, ragged and shallow, then a pause too long. Then another gasp, as if her small body was unsure whether to continue. In those moments, she did not fight. She yielded. She let the air and the mask, and our trembling hands do the work. She trusted that she could rely on what held her.

Her resilience was not in resistance but in reliance. And it startled me. Because if resilience for her is reliance, if her survival is the sum of many hands, many ties, many threads, why have we been taught to imagine resilience as the opposite? Why have we been told that to lean is failure, that to rely is weakness?

Endure in silence, carry your grief like a private stone, prove yourself by not needing anyone. This script makes us solitary. It distorts fatherhood into isolation, as though to love well is to disappear into a fuzzy invisibility. But a single knot, no matter how tight, cannot hold anything on its own. Only when the knots are tied together do they form a net. A father’s resilience, I am beginning to believe, is not found in how firmly he can stand alone but in how deeply he can rely and be relied upon. Resilience is reliance. Strength is not in separation but in connection.

There have been other moments, lower ones. Sitting on the floor holding my daughter when she is too weak to play, to sit, to do much but be held. I trace her small fingers as she drifts in and out of awareness. I often cry then, not from crisis but from the sheer fact that I cannot change her body, cannot take away the fragility she carries every day. Her eyes sometimes meet mine here for a moment before they close. She does not flinch from my weakness. She doesn’t need me to be unshakable; she needs me to be here. A father willing to remain, even if that means relying on her gaze to steady him.

This is the reversal our culture resists: fragility is not the opposite of resilience, but its ground. My daughter’s life has taught me that. The ventilator, the feeding tube, the medications, the meal trains, the help around the house, the thoughts and prayers and good vibes whispered over her—all of it is reliance. And yet it is precisely in this web of dependence that her life continues. Resilience emerges not in being untouched by need but in being held within it.

A spider’s web offers a better image of resilience to me now than an oak. The web trembles. It breaks. But it is also repaired, rethreaded, renewed. Its strength lies not in rigidity but in flexibility, not in singular hardness but in the pattern of connection. Each thread relies on the others; each knot tied to something beyond itself. Fragility is not erased; it becomes part of what holds it all together.

Fathers are rarely given permission to see themselves this way. We have inherited a silence, a script that says we must carry the weight without asking to be carried. And so, we rarely speak to each other about care, about grief, about the unbearable tenderness of watching a child suffer. We retreat into the myth of the oak and call it love. But what if fatherhood were something else entirely? What if resilience has always been reliance, and our silence has only deepened the fracture? I imagine naming aloud the weight of nights spent pacing hospital corridors, the helplessness of waiting rooms, the fear of not being enough. Not to prove endurance, but to weave ties. To hold each other as surely as we hold our children. What if fatherhood was not a fortress but a net?

Reliance does not mean passivity. It means fidelity. To keep showing up even when you cannot fix, to remain present when nothing changes, to lean and be leaned upon. This too is strength. When I sit beside my daughter during a seizure, I cannot stop it. All I can do is hold her hand, call her name, wait for her to return. My resilience in that moment is my reliance, on her will to come back on my wife’s presence, on the small circle of love that refuses to let go.

This is why yielding has become, for me, another name for love. To yield is not to surrender the bond but to trust it more deeply. To stay when you cannot control. To let others carry you when you cannot carry yourself. Yielding is not weakness. It is reliance. It is what nets are made of.

And in the end, this is what remains: not solitary strength, not the illusion of the oak standing alone, but the quiet fidelity of ties that hold. My wife’s hand in mine. Friends who ask the second question. Machines that breathe for my daughter until she can breathe again. My daughter herself, teaching me without words that life is carried by yielding. When I get to thinking like this, she looks at me as if to say, “Of course it takes more than one person. You’d last what, maybe 2 minutes on your own? 3 tops if someone left you snacks.” Alas, she is non-verbal, and I don’t read minds.

The myth told me that to be a resilient father was to stand apart. My daughter has shown me that resilience is the opposite, it is to stand together. To be one knot in a net strong enough to hold the weight of the nothingness of grief. To yield to reliance, and to find in that yielding not failure but promise.

Resilience as reliance, not resistance.

These ordinary instants are the ones that change your life.

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.

Author: Alison

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.

Author: Alison

1. Raising children involves all kinds of decision-making. Some of these decisions must be made quickly; in other cases we are allowed some time. Either way, there is always felt pressure to make the “right” decision—no matter how healthy, or sick, the child.
2. Anticipated regret is the fear that the “wrong” decision might be made. Understanding that difficult decisions are going to come makes the stakes seem especially high. Coping with anticipated regret requires acknowledging, early and often, that the situation is imperfect and that there may be imperfect decisions.
3. The fear of making a choice can be paralyzing, and the choices may not be this or that—there may be options in between. It is important to have confidence that you are making the best decisions you can, given the information you have available. If you do not have confidence in the information you have, seek help to get what you need.
4. Decisional regret is the wish that a different decision had been made. It is something experienced in retrospect, when realizing or imagining that a different outcome might have occurred with another choice.
5. Decisional regret brings with it a sense of loss for what could have been.
6. Some regret is almost inevitable. This is true of parenting any child. None of us get everything “right” every time. Be compassionate with yourself. Trust that you made the best decisions with the information you had available.
7. The clearer your goals for your child, the better prepared you will likely be to make the critical decisions with minimal regret. Be sure to re-visit your goals from time to time, especially if there are changes in your child’s baseline.

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Author: Alison

1. The pediatrician’s engagement has a significant impact on the family’s lived experience. If the pediatrician is disengaged, the family perceives abandonment or abdication of responsibility.
2. Their understanding of personalities and other dynamics plays a vital role in helping family members feel confident and secure in their ability to care for their child while supporting healthy siblings.
3. The primary care clinician sees the “whole” child. They are able to help caregivers consider the impact of interventions in the context of the family’s goals of care.
4. Wellness check-ups and other visits are an opportunity to check in with siblings and assess their coping strategies.
5. Staying connected to the family, and offering support to the child’s specialist team, reassures the family that they are valued.
6. Primary care clinicians can play a key role in introducing the prospect of transitioning the child to adult medicine, ideally as early as age 14.

Download a printable version of this list. Find all of our Top Lists. For the full guide, visit CPN’s Guide page on The Pediatrician’s Role in Serious Illness.

Author: Alison

1. The main goal of pediatric palliative care (PPC) is to address symptoms of physical and/or psychosocial suffering, and to support the needs of the whole family.
2. PPC is not related to end of life.
3. Pediatric palliative care focuses on making each day as good as it can be and the quality of life.
4. It can be offered at the same time as treatment of an illness, as early as a diagnosis.
5. A PPC team may follow your child’s care across different settings (clinic or hospital, home).
6. Palliative care clinicians can provide consistency across those settings over months or even years.
7. If your child’s medical team does not refer you for PPC or you are told your child doesn’t need palliative care, you always have the option to ask for it and make a decision for yourself.

Download a printable version of this list. Find all of our Top Lists. For the full guide in both English and Spanish, visit CPN’s Guide page on Introduction to Pediatric Palliative Care.

Author: Alison

1.  Traveling is a great way to take you out of your daily routine.
2. Preparation, realistic expectations, and input from your medical team can help make travel not only possible but successful.
3. Anticipate medical challenges ahead of time and create a plan for how to handle them should any issues arise.
4. Choose an appropriate form of transportation based on your child’s needs, tolerances, and limits.
5. Lodging provides your home away from home, so knowing how a location meets your unique needs helps prepare you for potential challenges.
6. Packing well is essential to a great trip. Knowing that you will have the right items and where they are will help you keep the focus on the fun and making memories.
7. And most important: traveling inspires curiosity and adventure, along with opportunities for all the travelers to be and feel brave.

Download a printable version of this list. Find all of our Top Lists. For the full guide in both English and Spanish, visit CPN’s Travel Guide page.

Author: Alison

1. Anticipatory grief is the name for what people experience when they know that they will likely face a profound loss.
2. It is not often discussed, because we tend to associate grief with after, not before, the loss.
3. Anticipatory grief is natural and a common part of the process.
4. It can take many forms (e.g., sadness, anger, irritability, guilt, mood swings, among others).
5. It may manifest with physical problems (e.g., sleep or memory difficulty, headache, or other physical pain).
6. It is important to know that anticipatory grief affects everyone in different ways and at different times – no two people are alike.
7. You don’t need to wait for death to seek support – the better the Before, the better the After.
8. Grief support and counseling, either one-on-one or in a support group, can be very helpful during this time.

Download a printable version of this list. Find all of our Top Lists. For the full guide in both English and Spanish, visit CPN’s Guide page on What is Anticipatory Grief.

Author: Alison

1. It is important to remember that children want a clear sense of what is going on with their sick siblings and within the family.
2. Understand and acknowledge that your feelings and actions affect your whole family. Consider what you want to communicate, and get support if you need help to do that.
3. Siblings will have questions and it is important to answer as truthfully as possible.
4. Be certain you know what your child is REALLY asking before you respond.
5. Being truthful, while respecting that children absorb information differently depending on their age, will help build trust.
6. The way you communicate and explore feelings with your children will change as they age.
7. If a topic makes you uncomfortable, or if you believe that the siblings will do better hearing about the topic from someone else, a professional (nurse, social worker, child-life specialist, palliative care clinician, spiritual leader) can be helpful.
8. Talking can be hard but keep at it and remember you are doing the best you can.

Download a printable version of this list. Find all of our Top Lists. For the full guide in both English and Spanish, visit CPN’s Guide page on Communicating Effectively and Compassionately to Help Siblings Cope.

Author: Alison

1. Shared decision-making is a process through which caregivers and clinicians discuss options for managing medical issues, and together make decisions that work with the family’s care goals.
2. Each of the participants in making decisions understands and responds to the issues being discussed in their own way. This is true of both caregivers and clinicians. When you are unsure, it is helpful to reflect on how you have made decisions in the past. You can use your experience as a guide to help you consider options and communicate with the clinicians.
3. Not all decisions can be shared. Sometimes a clinician will suggest that only one option is likely to achieve the hoped-for outcome.
4. However, in many cases there are several potential options to consider, and different families will make different choices. Other times there is no clear path. In both instances, moving forward depends on the family’s goals.
5. In most situations there is time to consider information and recommendations, and caregivers should feel free to ask for it. But sometimes there is no time at all; and in those cases, it is likely best to defer to the recommendation of the clinicians.
6. In any situation where information or goals seem to be in conflict, caregivers should name their concerns and ask for clarification from the clinicians. Learn more about this in the Courageous Parents Network Framework for Sharing Decision-Making with Your Child’s Clinicians.
7. Remember: The choices you make will inform the illness journey, but they do not always determine the outcome. The more you believe that you are making the best decisions you can with the information you have, the more self-compassion and the fewer moments of regret you are likely to feel.

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Author: Alison

1. Showing up can be done in person, or via calls or texts (Though don’t expect a response. Parents are tired and stretched thin). You don’t have to have the “right” words: sometimes simply listening, and “holding the space,” is just right.
2. Send a message with a specific day and time when you can show up in person and help, so the parent or caregiver need only reply “Yes” or “No.” Be prepared to help with what is needed at that moment (e.g., washing dishes, holding the baby, buying milk, doing or folding laundry).
3. If you can’t be there in person, send a photo of how you’re thinking of the family – like the child’s name in the sand.
4. Parents experience no communication at all – ‘ghosting’ – to be very painful.
5. It’s important to be sensitive and not make assumptions about what parents can tolerate. Don’t assume a visit with your child or a trip to the park will make them feel good. When in doubt, Ask.
6. You can assume that parents and caregivers have little energy or time, so don’t send items or propose activities that will create more work or cause guilt if they are refused or don’t get used.
7. Check to see if there is someone coordinating meals or errands, or if this is being done through an online service. When you participate (or organize) you are helping to keep the family from being overwhelmed while also ensuring that they have assistance when they need it.
8. Be sensitive to siblings. If you’ve got a gift for the child who is sick, have one for the sibling(s) too.

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