Perspective: Parent
Reprinted with permission from Why I Laugh In The Face Of My Daughter’s Life And Death, Kelsey Stanczyk, ©Perspectives 2025 American Academy of Pediatrics
View original publication at Perspectives in Pediatric Palliative Care N. 4 and also Home | AAP.
I was recently asked to reflect on what a good day looked like with Stella. When I closed my eyes to remember, I saw me holding her, sitting on my couch with nowhere else to be, and listening to her laugh. I can recall this feeling light and warm. These memories feel like bright lights in my mind. I think a good day with Stella was what joy feels like. Humor helps me access that joy.
Stella is my youngest daughter. She was born when my older daughter, Zoey, was three years old. Stella was born with two rare chromosomal abnormalities after a stressful pregnancy, and she lived until two weeks before her second birthday. Her life was full of many ups and downs and unpredictability. Stella lived with a variety of complex medical needs and eventually died due to related complications. Those two years were difficult, scary, and also so beautiful. It’s very strange to live in a world as a mother whose child has died. Some days I wonder how it’s even possible. I’m learning that it’s possible through remembering all the days: good, bad, and the in between, and finding ways to connect to the light that this life holds. Laughter is one of those lights.
Stella had a startling (in the best way) laugh. Her genetic anomalies contributed to her short stature so when this booming cackle escaped her small body for the first time, I laughed to the point of tears. Stella couldn’t communicate in traditional ways and that often led to guessing and frustration. What was she saying? What did she need? I’d often find myself second guessing if I was doing something right. But when she’d burst into laughter with her whole tiny body, I knew she was telling me she was happy.
Laughter truly can change everything. I think about times in my life where I was consumed with overwhelm, sadness, anger, grief. Sometimes the only thing that could cut through that overwhelm was laughter. I learned this well in my experience with Stella. Sure, my humor may have become a little cynical or darker at times, but it always brings me back into the light when I need it most.
Now, I’m not talking about everyday being “glass half-full” and needing to twist every single detail to optimism. That’s not real or helpful. Being told “it all happens for a reason” or “look for the good” is the opposite of helpful in terrible times. But a genuine authentic moment that makes me laugh is healing.
As an example, our family made the incredibly difficult decision to compassionately extubate Stella and focus on comfort care. On the day we were going to extubate Stella, my husband was packing a bag to bring to the hospital. We did not know how long Stella would live after that extubation and were told to plan for hours to days. My husband had to pack a bag and choose clothing to wear for his daughter’s last days. How weird is that? To plan your clothing for when your child dies. That isn’t funny. That isn’t something to “find the good” in. But when he came across his Bluey T-Shirt that said, “Oh Biscuits!” it was a little funny. Being parents to a then five-year-old and balancing life with another child with complex needs, we often turned to Bluey. We knew that this show could provide an eight-minute break and give Zoey some screen time that didn’t feel like horrible parenting. We’d all grown to love this family of dogs.
He didn’t end up wearing that shirt when Stella died. But he showed up at the hospital that night and told me he considered it. I laughed and sobbed and thought “Oh Biscuits, indeed.” In the heaviest throes of grief that laughter amidst the sobs was a glimmer of joy that kept me connected. A sliver of light in the darkest night.
Or when we went to pick up Stella’s urn from the funeral home after she died. This small urn felt cruel and wrong. Even the funeral home director seemed uncomfortable coordinating the cremation of a toddler. We got in the car holding the urn with a sense of finality, wondering “What next? She’s gone, and we’re left with this vase.” What was next was that we drove home. But we worried about the vase rolling off the seat and falling on the floor.
It didn’t feel right to put Stella on the ground – but her urn fit in the cup holder. So, she rode home in the cup holder like a super-sized fountain drink from the gas station. Again, the absurdity and humor brought tears of laughter among the grief. Somehow, there’s some joy there.
My husband and I had to explain to Zoey that her baby sister was going to die. We had to find a way to explain death, its finality, and cremation to our five-year child. I truly believe that Zoey is okay today because we did so authentically and allowed her to guide the process. Humor played a role there too. I will never forget sitting with her at the foot of Stella’s hospital bed coloring and talking while Stella’s nurses provided care. Zoey asked us what we do with ashes once a body is cremated. We discussed that some people keep them in an urn close by, make jewelry, or scatter them somewhere meaningful. Stella lived one third of her life at the hospital. It was the reason we chose to stay there for her death and not bring her home – the hospital was her home too. So, when Zoey suggested that the most meaningful place to scatter her ashes would be in the hospital, the whole room had a good laugh. (Or rather, it did after a very weighted pause and me declaring we would not be attempting a Greys Anatomy-esque burial for Stella.)
Humor is something my family depends on. To others who don’t know this pain or grief, I’m sure it can look dark. But it keeps us together and it keeps us going. Stella was deaf, and Zoey would make jokes all the time about Stella getting the luxury of ignoring noises or things that Zoey found annoying. We never needed to worry about Stella running away in a crowded grocery store. Not because she was well behaved, but because she couldn’t. You’ve probably heard the phrase: “If you can’t laugh about it…” We have so many of those moments. Yet, I think it’s more than that. Humor and laughter are crucial to survival, to coping. Stella’s diagnosis gave me permission to find whatever humor I connected with and allow it to bring joy. It’s helped me connect with other parents who understand.
Grief is everywhere: in small instances and in large ones that may feel too large to move forward through. My life as Stella’s mom provided me with small and large griefs. Surviving the hard days is possible by finding that light – that joy – wherever I can. Humor and laughter connect me to the joy of Stella’s life.
When I wear my “Emotional Support Ghost” sweatshirt with Stella’s name on the sleeve (that I bought from another bereaved mother, whose humor and online presence has seen me through some dark nights), I don’t care if someone in public thinks it’s inappropriate or judges me. Because I know that it’s not. It’s real. It’s important. Humor is joy in another form and sometimes it’s the only connection I can access.
My advice to providers or anyone who is part of another’s grief story is to honor that humor. Honor that connection to joy. It’s okay if you don’t get it or don’t understand. We all find humor in different places. It’s important to find those places and allow them in. I know how it feels to be stuck in the darkness, shoved down by the hopeless weight of grief. Authentic laughter lightens that load and allows you to float back into the light. It can bring you back.
Perspective: Parent
What I Mean When I Say “I Hope…”
Often, at the bottom of our darkest pits, there can be found a small pool of glitter. Its bubbling
warmth calls us in, lures us, with promises of brighter times to come. It sparkles like an exit, like
rest, like relief. It almost looks alive. Especially as the days shorten and the year thins toward its
edge, we can mistake this shimmer for light.
I have.
I can’t tell you how many times I’ve made wishes for my daughter. You might find my wishes
hanging from every star, pinned to the early darkness that arrives before dinner these days.
They’ve been tucked into bedtime prayers, scribbled on appointment forms, whispered into
intake calls, swallowed in waiting rooms where the clock seems to stall. Wishing, however, has
no agency, which is why it so often disappoints. We can glide on the soft illusions of wishing for
years. I once thought the world could change if I asked it nicely enough; and when that didn’t
work, if I yelled at it loudly enough. But nothing moved until I did.
It is hard to keep ourselves from falling into glittering wishful indolence because wishing is easy.
It’s buoyant. It floats us gently above reality like lights strung against the dark, beautiful but
untouchable. But hope lives lower than the lights, and it will not be with the glitter that we find
our way out of the abyss. It is in the muck and mire of the clay and walls through which we must
climb, hands cut, clothes wet, heart pounding with the yawning terror of effort.
Hope lives where boots meet ground.
We aren’t built on wishes; we’re built on hope. A wish asks, What do you want? Hope answers,
This is what I’m doing about it. Hope is not a request, but it is not exactly a response either. It is
not up in the stars. It’s down here, in the cold, in the mud made from the sweat and tears of
terrified people doing hard things. In the struggle of people whose very existence is in defiance
of the odds. Hope doesn’t turn away from pain or speak around it. Hope enters pain and gives
meaning to its shape, or at the very least, direction.
Hope, then, requires motion. Not because we are certain of the outcome, but because we are
certain about what our hoping demands of us. Hope is making the terrifying phone call while the
rest of the house is quiet. It is gathering the pile of unintelligible forms and answering every
question even when none seem fair. It is showing up to the difficult meeting ready to speak even
when your voice is shaking. Hope is not just praying for rain; it is digging the well. It is
sharpening the tools. It is learning which rock wall will hold and which won’t. Hope is willing to
sweat, even when the air is cold.
But hope isn’t solitary work. Voicing our hope is the declaration of everything we are willing to
do to be the kind of person we want to be. It marks the boundaries we are willing to fortify.
Voicing it also invites witnesses. When found in true community, hope both carries and is
carried by others. I have not survived on my own hope alone. Often, I’ve borrowed it. Often,
someone has seen me sinking and, without saying so, climbed down into the pit with me and
said, I’ll hold you while you look for your footing. This hope is embodied and ordinary, the work
shared between human beings not to fix things, but to keep moving through them. In the season
when doors open and tables are extended, may we all hope for a community of reasonable
beings bound together by a common agreement as to the objects of their love.
And this is why hope is so difficult: it breaks you.
It both crushes you down and opens you up. It is an unselfing; a difficult, precise kind of
breaking. Hope drags us through the sludge of reality and wakes us up to what needs to be
done. Sometimes it sounds like hard truths: We need a new specialist. This medication isn’t
helping. She’s declining again. Sometimes it arrives as a silence so heavy it requires a
response. Hope asks not only what is possible, but what is required. And when you finally see
what is required, you cannot unsee it. You become responsible for it.
A wish is little more than breath, while hope is given substance by the weight of authentic
responsibility. This responsibility is neither sentimental nor abstract. It demands nothing more
and nothing less than for you to radically be the kind of person you want to see in the world. Not
someday, but now. In the way you sign your name on the line. In the way you hold your
daughter’s head when she can’t hold it up herself. In the way you choose gratitude when rage
would be easier. In the way you speak truth when silence would be safer. In the way you wake
up tomorrow after the calendar turns and do it again.
This is why hope is not merely oriented toward the future. It informs the present. It rearranges
the texture of each moment. Our hope isn’t motivated by an unknown happening; we hope
because we are certain of the actions our hoping requires. Hope does not guarantee outcomes;
it guarantees movement. It guarantees that the past will not be allowed to fade but will be
carried forward as fuel. Hope says: I may not control what arrives, but I will shape how I meet it
one ordinary day at a time.
And so, when I say that I have hope for you, my daughter, I am not wishing for a world that
magically unfolds in your favor. I am committing myself to a way of living that leaves the world
with no other option but to make room for you. I am willing to live in such a way as to create a
world that you deserve to live in, and one that deserves to have you living in it. A world made
not of wishes, but of work. Not built on glitter, but on gratitude. Not imagined or remembered
from afar, but made here, in the present. Like those gifts that only exist because someone stays
up late to assemble them.
Hope, when it’s real, is simply love with its sleeves rolled up.
I hope you know how loved you are.
Perspective: Parent
First published on Patient Worthy.
There were so many anxious years leading up to this moment. Thoughts of this impossible decision rattled around my brain and squeezed my heart for years. And now the day had finally come.
Kept company by a small dim light in the back corner of our PICU room and the hum of the bipap ventilator, I was frantically making a pros and cons list of what my son Bubba’s life would be like should we pursue a tracheostomy. Desperately trying to recall all the information given to me by our specialists, I felt like I was sinking due to the weight of a seemingly impossible decision. I laid down – a vain attempt to surrender to the mental exhaustion. Pulling the blankets back over my head, I quickly found myself rolling over on my side, retrieving my phone and diving back into exploring the options for a tracheostomy.
In the years leading up to this day, Bubba’s respiratory status had been declining. Bubba was born with a rare neurological condition, Neuronal Migration Disorder with Cortical Malformation, which had greatly affected his muscle tone and subsequently his respiratory system. For years as I watched Bubba grow, I also watched how respiratory illnesses were becoming more gruesome and day to day activities brought on significant breathing problems. When our specialists started to drop subtle hints that a tracheostomy could be in Bubba’s best interest, I knew I needed to begin preparing for the decision day.
A tracheostomy seems like an easy, no-brainer, almost “easy button” decision when your child is faced with airway obstruction and a progression of their condition. When the tracheostomy talk started to appear on our radar, I soon realized the decision for a tracheostomy was far more complicated than I had ever realized. Being a seeker of valuable input, I spoke with friends whose own children had tracheostomies to learn what the care and their day to day looked like. I knew I also needed the advice of a trusted medical professional to explore the myriad of questions circulating in my brain. Bubba’s neurologist had a deep understanding of who my son was as a person, his finicky medical complications and our values as a family. As parents, we often seek the “expert opinion” and in this case I was desperate to have that from Bubba’s neurologist. In her honesty, she shared her reservations about how a tracheostomy might contribute to Bubba’s quality of life. In my heart, I had similar reservations too and hearing the same worry reflected from our trusted neurologist shaped my mindset for the looming tracheostomy decision: it was a hard no.
But here I was, a year later debating the decision all over again. I knew I needed yet another opinion. I sought out the
opinion of two otolaryngologists and wondered if their opinions would be the same. Both doctor’s findings were identical: Bubba’s airway was collapsing, and his lung function was declining. The doctors offered options rather than opinions – a tracheostomy or keep Bubba on bipap ventilator. They explained a tracheostomy would provide a stable airway, but there was no indication that it would prevent further airway collapse below the tracheostomy and it wouldn’t reverse his disease progression. The less invasive option of bipap ventilation provided less risk, but the medical team was certain that with that choice Bubba would only be left with a few months to live. Furthermore, Bubba’s entire medical team was unsure if his body would recover from surgery and be able to ever wake up again from sedation. As I tossed and turned on the hospital couch bed, tears filled my eyes. I felt no matter what decision I made, it still meant Bubba faced significant decline in his condition and likely the end of life. I was overwhelmed with a feeling of defeat.
As the sun rose the next morning, I quickly got myself ready and was determined to make the decision. Pushing up a chair beside Bubba’s bed, I studied him as he still slept. The bipap ventilation mask covered his entire face, but he seemed comfortable. The days prior, Bubba had required his bipap mask almost constantly as he would desat quickly once it was removed. As I grasped Bubba’s hand in mine, I felt a bit more clarity, I couldn’t send Bubba into a surgery without absolute certainty he would come out on the other side with a better quality of life. Furiously, I dove back into researching the options for a tracheostomy before Bubba’s team arrived for morning rounds. Thankfully, the day before my palliative care team reminded me of the resources on Courageous Parents Network. I read through the tracheostomy decision guide and reflected on Bubba and our life together. I explored the videos and connected immediately with the parents who chose not to proceed with a tracheostomy for their child. Being able to hear from another parent who faced the similar impossible dilemma and was choosing to forgo the “easy button” solution was comforting to me.
In the end, I realized that choosing to pursue a tracheostomy wasn’t giving up on Bubba. By not choosing a tracheostomy, I was choosing the path that honored who he was and the life we had built. This decision was not made from fear, but out of love, deep reflection and an understanding that more intervention does not always correlate to more life.
Although it was one of the most difficult decisions I’ve ever had to make, I eventually found peace in knowing that I was no longer acting out of desperation. Instead, I moved forward with the confidence that this was what Bubba truly needed—comfort, dignity, and the unwavering presence of a mother attuned to both her child’s needs and her own inner guidance. The anxiety that had weighed on me for years didn’t vanish entirely, but it was eased by the clarity and love that came with the decision. In that space, I was able to simply be with Bubba—holding his hand, loving him deeply, and continuing our journey together.
Blair Young-Whitworth is a devoted mother, corporate professional, and passionate advocate for children with complex medical needs. She is the mother of two children, including her beloved son Bubba, who was born with a rare neurological condition—neuronal migration disorder with cortical malformation due to a MED13 gene mutation. Bubba passed away in 2024 at the age of 10, leaving a lasting impact on all who knew him. In his memory, Blair continues to channel her love and experience into advocacy, working with Courageous Parents Network as a Parent Champion to support and empower other families facing similar journeys. In addition to her role in the corporate world, she dedicates her time to government advocacy and is a Lay Educational Advocate, helping families navigate the special education system.
Perspective: Parent
How an Instruction in Critical Care Became a Philosophy of Living
The room is dim except for the flickering of the pulse oximeter’s slow waveform. My hands are on her small body, rolling her onto one side. Even this simple act requires choreography: lift under the shoulder, steady at the hip, watch the feeding tube, the oxygen, the monitor cords that twist like roots if you’re careless. She exhales with a wet rattle that tells me which lung needs help. I listen, adjust the pillow under her ribs, and tilt her until the rhythm evens.
“Good lung down.”
I wrote good lung down in the notebook and now the words arrive before the memory does. A respiratory therapist said them once, many admissions ago, while angling her in the hospital bed just so. I can still see his hand on the rail, the confidence of habit. “You want the healthy lung on the dependent side,” he said, “so it can carry the weight, help the other expand.” He spoke like it was obvious. At the time, it wasn’t.
Now it is.
Her right lung was the good one that night, the left still recovering from pneumonia. Her body was warm and surprisingly heavy. Not dead weight, but dense with sleep and medication. I kept a hand against her ribs, feeling for the subtle lift that means air is reaching where it couldn’t before. Gravity does its slow work. I’ve done this hundreds of times, but it never becomes autopilot. Each turn asks for precision. Her body’s healing depends on such small degrees.
When her breathing steadies, I step back. The pulse-ox climbs: eighty-seven, then ninety-three. I exhale with her. Between each breath the room seemed to hold its own too. The phrase hums in my head like a refrain, less instruction now than ritual. The waiting that follows is its own form of care.
There was a night, early on, when I got it backwards. She’d been restless for hours, her numbers dipping, and I thought I could make her more comfortable by turning her away from the sore side. Within minutes the monitor shrieked. I remember the panic, the scramble to correct, the instant relief when I put her good lung down again, the breath returning. I learned that lesson in the blunt language of oxygen saturation.
The body doesn’t lie about imbalance.
Still, I kept living by the wrong orientation in my own quiet ways. When people asked how we were doing, I gave the wins: a stable week, a smile, a rare stretch of sleep. I performed competence habitually and protectively, the way you perform posture. I didn’t want to burden anyone with the other side of it, the fatigue that seeps into bone, the private griefs that have no clear edge. I led with the good lung up, trying to keep what hurt from showing.
That’s what most of us do. We present the stable side first, compressing the rest beneath it. We tell ourselves it’s for others’ comfort, or our own control. But over time the pressure builds; the wounded parts can’t expand. Somewhere in those long hospital nights, I began to wonder if I’d been positioning myself backwards. I’d been protecting the hurt instead of giving it air. I’d been tucking it away, the way you’d cradle a wound and tell yourself it’s safer that way. But the physics didn’t work. Healing required exposure, dependence, gravity. The good lung had to go down so the bad could breathe again.
What if the same logic applied beyond the body?
She’s resting now, angled just right, her chest lifting in a steady rhythm. The good lung down, bearing the weight so the
other can open. The physics of healing is counterintuitive. But the lungs know what the mind resists: expansion requires exposure.
I think about that often, the physics of healing. How the stronger side becomes foundation, not façade. How what is whole steadies what is struggling. We’re taught a different pattern, of course: stay positive, be strong, keep the hurt tucked away. Especially in the world of care the performance of lone resilience becomes reflex. Strangers call you amazing. Providers say you’re an inspiration. You start to confuse endurance with enlightenment. You mistake competence with completeness.
But that’s bad lung down.
When we lead with where we are strong by ignoring where we are weak, we smother the places still trying to breathe. We compress the grief until it can’t clear, the exhaustion until it ferments into shame. “Good lung down” suggests letting stability carry the pressure so fragility can have air. The good doesn’t disappear; it simply takes a supportive role.
This integration is essential when dealing with loss that has no clear boundary; what some call ambiguous loss. The life I grieve is a ghost that coexists with the life I have. I cannot bury this grief, nor can I cut it out; the body is here, but the expected future is gone. The work is not to achieve closure, but to achieve meaning-making by allowing the healthy parts of my identity and my life to bear the weight of the reality, not to deny it, so that the wounded parts (the fatigue, the fear) can be positioned for true expansion. The fragile side must be seen and supported, not suppressed.
This isn’t wallowing, you aren’t sanctifying the bad lung. But this also isn’t extirpation, you don’t cut out the affected lung. You reposition it and allow the wounded parts to face the air, trusting the rest of you to hold steady. Healing isn’t heroic, it’s gravitational. It’s the slow rotation toward openness, the willingness to let pain expand instead of sealing it off.
Like respiratory care, it’s a practice. You listen, adjust, wait. You keep turning until the breath moves freely again. There’s tenderness in that discipline. The same precision I use for her body belongs elsewhere too. To my own heart, to the unseen spaces that tighten when I try too hard to protect them. The wisdom is already there: the strong must be yielding for the fragile to heal.
True healing comes not from hiding but from bringing the hurt to light and allowing stronger parts to hold. Which means that true strength comes from being supportive, not from dominating.
Good lung down. Not forever. Just long enough.
What, or who, are the ‘good lungs’ in your life? Who are you the ‘good lung’ for? Are you letting them hold your hurt? Are you holding theirs?
If you would like to share your response to Bud’s question in an email please send to connect@courageousparentsnetwork.org and we will be sure Bud receives it.
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.
Perspective: Parent
“I’m so glad I have a sister. Otherwise, it would just be me, you, Daddy and Suki (our dog).” Those were the words spoken to me recently by my four-year-old daughter, Nika as I rounded the corner from Sasha’s sit to stand recliner and headed towards the hall. I was stunned but tried not to show it. It had been a hard week in the household. I returned from a remarkable caregiver’s workshop in Washington DC to find that Sasha took a swift downturn during my ever so brief absence. We had already taken her to her primary care provider. It was a lengthy visit. As I sat there, the most surreal wave washed over me – a knowledge crest that everything was about to change.
My husband Mike came to the appointment to help get Sasha in and out of our vehicle. We had Nika in tow as the
appointment fell on a non-school day. Fortunately, there is a cute park on the clinic’s campus, and the weather cooperated for Nika to play for nearly 2 hours while Sasha and I investigated the next steps in her care plan. I appreciated the levity of Mike sending me time trials as Nika ran laps, “11.77, 12.08, 11.76, 13.31.” Random figures illuminated my phone with no explanation – a pleasant mystery that provided a helpful distraction. The day was a brighter gray than some during a particularly windy October.
Daylight savings was coming soon. I sat there silently bemoaning as I waited for Sasha’s PCP to enter the exam room. I’ve always resented the changing of clocks. In my college years, my first taste of adulthood, the time change always took me aback as it collided with an irresponsible modus operandi. Seemingly always in a public establishment, I’d look up only to realize I was an hour off on my given day. Years later, upon having my first child—a daughter with special needs—I would marvel, with frustration, at how deeply her days were affected by adding or taking away even one hour from her already tenuous schedule. Now, in middle age, I resent the changing of clocks for an entirely different reason: who are we to collectively manipulate time? What gives us the societal audacity to control clocks? Do we think we are God? Little did I know—especially in those college years—that time would become such a burden during most of my child-rearing years. I would either wish for it to speed up amid the angst of “When will this ever end?” or to slow down indefinitely so I could cherish the good years.
For nearly two decades, that balancing act came alongside a family unit of 2-3 individuals. While a single Mom to Sasha, there was never a reality of adding a sibling to her chaos. And when I met my second husband as Sasha was approaching age five, I was still a steadfast NO! My hands felt full with an extremely hyperactive child with significant special needs. Being in the throes of destructive sleepless nights, a nocturnal manic state that is common for children with Sanfilippo Syndrome, I knew that adding another child would be the rush of air that pushed down the line of dominos. As Sasha approached nine and we learned of her diagnosis of Sanfilippo Syndrome, we were faced with an unthinkable reality – Sasha’s body carried something fatal. With that realization came the heavy understanding that adding another child would mean they, too, might one day experience a traumatic loss. I doubled down on my steadfast “no” but was that ever the right way to view things? In truth, we could all lose anyone in an instant. Who was I to play God…to try and control any outcome?
My phone continued flashing Nica’s times as I chatted with our PCP’s counterpart, a new nurse practitioner on Sasha’s medical team who was visibly committed to addressing the clinical concerns unfolding. We discussed the preceding week and the cascade of events – Sasha’s sudden struggles with swallowing, her significant weight loss and increased tremors while eating. A swallow study was ordered. I left with numerous instructions, including recommendations for utilizing Sasha’s g-tube for nutrition within a specified framework.
The g-tube. A gut-wrenching decision that I fought so hard against that preceding year. Nine months of meeting with numerous specialties – Palliative, Genetics, Neurology, Complex Care. Messaging friends and acquaintances in the Sanfilippo community. Reaching out to fellow nurse friends to discuss the clinical implications. Listening to interviews of families before me who navigated the same decision. Middle-of-the-night brainstorming sessions filled with self-reflective thoughts. Looking back on the early days post diagnosis. I remembered sitting in Sasha’s cozy bed, holding her close, telling her I would never initiate any invasive procedure. We would let nature guide us and she could tell me when she was ready to be done with the fight. I told her to never hold on for me or anyone else. When she was tired, she could let us know and we would support her decision to let go. I would never play God.
That time now felt so out of reach, so long ago, like she and I were completely different people. I couldn’t believe the day I found myself sitting in a surgeon’s clinic, waiting for a g-tube consultation. He thought Sasha and I were there to schedule the surgery. In reality, I was there to ask the question, “who are we to think we can change course in an agreed upon pact?”
A highly rushed individual, as trauma surgeons will be, he bound through the exam room door and asked even before making eye contact or sitting down, “What questions do you have for me?” I stared as I waited for him to find his seat and scoot over via his three-wheeled black vinyl stool. A lanky fellow with wisps of black hair along a mostly bald scalp, his shoulders too broad for the wash-faded indigo scrubs, I quietly wondered if he was a long-distance runner. He looked at Sasha and saw my reservations. Knowing we were both rushing to get out of there, I spoke rapidly to squeeze it all in. Eventually, he softened and shared a personal story of his own father temporarily needing a g-tube. He could not impress upon me enough, he stated, the importance of nutrition and hydration in all phases of the lifespan. In that moment, he became more than a surgeon. He became human.
I told him I’d think it over and he shared the process for scheduling. It would not be an immediate phone call, I told him. He encouraged me to call and make an appointment, pointing out that as the day approached, I could always cancel if I was still feeling unsure. He left. I felt a bolstering confidence, ever so briefly. I was not reneging on an agreement made to Sasha so many years ago. And I certainly was not playing God. Was I?
“12.65” Nika’s time trials at the clinic’s park were ending alongside our appointment. Mercifully, Nika did not ask what transpired, an unusual occurrence for her inquisitive nature and foreman mindset overseeing all of Sasha’s care needs. She was consumed in exhilaration by her newfound mastery of time. She had learned through her dad’s coaching that she was slowing down ever so slightly each time she approached the finish line. He had explained that if she made a final push as the imaginary line approached, her time would improve.
There will be times in virtually all our lives, where we will be asked to make a decision standing at the crossroads of faith and uncertainty – at the intersection of medicine and personal philosophy. We may be called to decide for ourselves or for a loved one in a way that directly impacts a clinical outcome.
I have been fortunate to have a care team that welcomes these discussions, even discourse when necessary and who recognizes that philosophy is sometimes malleable and that certainty is never a guarantee. In a world that feels unquantifiable, when making decisions that feel impossible, I came to realize that an 80/20 ratio may be the best that I can do. If 80% confidence in a decision can be obtained, then that is where I will hang my hat. Those decisions may evolve with the revelation of new information or the presentation that is in front of you – our minds can change, and that is alright.
I didn’t know what to say in response that day when Nika proclaimed how happy she was to have a sister. I fought back tears and simply offered, “I’m so glad you have a sister too.”
Joanne Huff comes to Courageous Parents Network as a long time follower and parent enthusiast of the organization. As the Mother of two girls, the oldest of whom has the rare disease MPS IIIA/Sanfilippo Syndrome, Joanne has benefited tremendously from the intimate parent interviews and candid, vulnerable story sharing throughout numerous thought provoking blog posts. As her daughter’s activities and lifestyle started to slow down with disease progression, CPN became a larger anchor in times of uncertainty and unrest. It is through this lens that Joanne hopes to share experiences and insights via the CPN blog.
Joanne completed nursing school after her daughter’s diagnosis, receiving her Bachelors of Science in Nursing from Plymouth State University, Plymouth NH. She enjoyed community liaison work with home care providers of adults with special needs up until her own daughter’s care became increasingly more involved. In addition to serving on the Boards of New England Regional Genetics Group (NERGG) and Adaptive Sports Partners through 2024, she has found great purpose in volunteer work advocating for policy improvements and change in Washington DC with the National MPS Society. In her free time, Joanne seeks balance and refuge with yoga, hiking and performing as an ensemble Soprano vocalist with the Pemigewasset Choral Society. When not blogging for CPN, Joanne enjoys sharing offerings on her personal Blog Folding Origami for God. She resides in Bow New Hampshire with her two daughters, Sasha and Nika, her husband Mike and her yellow lab Suki.
Perspective: Parent
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.
Perspective: Parent
It had been many years, 23 to be exact, since the last time I navigated life with a toddler. While friends of mine have started celebrating their entrance into grandparenthood, I had a remarkable occurrence of a surprise pregnancy instead. At age 45, while already the mother to a 22-year-old daughter with medical complexity and developmental needs, I was told the shocking news that I would be the parent to a daughter once again. Advanced maternal age hurdles were cleared, some more tenuous than others, but lo and behold, in the winter of 2021, a newborn arrived. Those first two years with our daughter Nika were filled with daily pinch me moments. We marveled at the mere existence of this new person developing before us. Highchairs, car seats, onesies and child rearing technological offerings, unheard of in the late 1990s, all took hold within our home. Milestones were easily met. We were on absolute cloud nine.
Then, toddlerhood entered. The temper tantrums, safety concerns and juggling of a very mobile little one coupled with the noticeable decline of her older sister became a heavier weight to carry. In this newest journey with toddlerhood, I started to wonder if my age (now 50) or perhaps the cumulative effects of decades of diaper changes, now for two individuals instead of just one, had created mental exhaustion.
I started to rescind from social interactions due to overwhelm. Most notable was my inability to clearly answer the question; how can I help? when offered by supportive friends. I understood their generosity and genuine desire to be of assistance, but I could not identify my own needs. My internal dialogue went something like this – Do I need someone to tend to the house or tend to my older daughter with special needs? Would it help my mental state if I found purpose by going back to work? Should my toddler attend preschool full-time while I remain home to catch my breath? Maybe I could simply “do better” at streamlining life and its collective tasks. In this past year, the most common thought I find myself thinking in response to outside offers of help is, “stop making my life harder”.
Small minor things like my husband asking if I know where his shoes are, my toddler insisting on Mommy doing something over anyone else, administrative bottle necks when trying to get a mere prescription refilled, are all examples of times when mental overwhelm takes hold. This wasn’t always the case. It’s only during this past year I’ve noticed this shift within my normal state of homeostasis.
This phenomenon self-propelled; it is now the case that when well-meaning friends suggest the planning of a girls’ outing, when I place unrealistic expectations on myself to see extended family members, or even just grabbing a quick dinner out with my husband ALL compound daily stressors. Each time one of these opportunities arises, I feel the quiet constraint of a belt being cinched, hoping to reach that next hole – wanting to please others, wanting to find balance, wanting to lead a normal adult life. Meanwhile, I feel a house of cards crashing down from all the tasks waiting in the wings.
Recently, I decided to investigate what research exists on the tolls taxed upon caregivers of adult children with special
needs. I postulate that these consecutive 27 years, totaling more than half of my own lifespan, are the root cause of my mental decline. It’s not so much that the individual tasks of caring for Sasha, who suffers from the neurologically degenerative Sanfilippo Syndrome, are my undoing, but rather the collective and ongoing nature of those tasks.
Indeed, a useful study conducted by the Polibienestar Research Institute, Universitat de Valencia and Biomedical Data Science Lab – ITACA Institute, Universitat Politecnica de Valencia, found that “the aging of family caregivers has been correlated with decreasing caregiving efficiency”. Perhaps my initial read was accurate. While my commitment to caregiving itself has never waned, my engagement with all things peripheral from it certainly has.
A little more digging had me also reading a National Institute of Health study illuminating Carol Ryff’s 6 domains for consideration towards psychological wellbeing: (1) Self-Acceptance, (2) Positive Relations with Others, (3) Autonomy, (4) Environmental Mastery, (5) Purpose in Life, and (6) Personal Growth. Immediately, many of these categories lit up my brain like a PET scan and caused me to reflect on the evolution of my life.
Sasha, who for so many years ran wild, laughed with mischief, fed herself and loved riding in the car, windows open, music blaring, is now so deeply changed. Today, Sasha is wheelchair bound, trembling while eating, crying out in the night longing for assistance to be repositioned. She needs diapering at the most inconvenient times, which is every instance that we’re headed out our front door on time, or in a public setting with a precarious wheelchair bathroom. As her eating and drinking rates have significantly slowed and require more of my time, the list of administrative and household to-do’s sits idly waiting. Her care has taxed my autonomy, my environmental mastery, my self-acceptance and my purpose in life. She has changed my trajectory. This reality is undeniable.
Sasha’s changes serve as a reminder that what was once helpful to me – like offers from others to help – may no longer be as useful. I live in a suspended state knowing that what would be most useful to me now is something that will never return: a mobile Sasha – a robust, strong, speed eating, agile Sasha. Setting that aside, even when I can identify resources to bolster control over my new environmental landscape – those which might provide greater autonomy or tap into my purpose and aid with self-acceptance – I find myself unable to act. My continual state of overwhelm has made it difficult to determine a beneficial resource.
At one point in time finding someone to help with housework or securing a care provider with a flexible schedule were the most meaningful forms of assistance. Blogging and journaling aided in reflection and self-acceptance and rippled into enhanced positive relations with others. Working outside the home provided purpose in life and personal growth. But in this current iteration of life, those tasks simply mean more oversight, which means more areas for me to manage.
In recent years, I have also identified that a quiet house provides the biggest boost in bandwidth. When Sasha’s school years came to an end, so did a quiet home. While we are very fortunate to have nursing staff come into the home to care for Sasha, Sasha and her sister (along with an additional individual) are now almost always home and a quiet house nowhere to be seen. This suggests to me that a certain bandwidth must be present to even pursue supportive tools or resources.
How can I help? is a well-meaning inquiry. But this inquiry can often stunt a response from the caregiver who is so often in that state of overwhelm. It asks us to think of a solution when we are already drowning. Thinking about Carol Ryftt’s 6 domains, it occurred to me that those offering support should consider them as well. For example, when asking a friend who is caring for an individual with special needs to go on a girl’s weekend, it might be helpful to first ask yourself – does that friend HAVE the mastery over their environment, or the autonomy to make such a plan? Or upon deeper reflection, you might see that the caregiver is consumed with domains 5 and 6 and understand that simply going out to dinner may feel like a pulling away from precious time needed to pursue their own self-care or purpose creating activities.
Caregivers often struggle with how their lives feel dictated by their circumstances. In my case, travel, working outside of the home and the pursuit of additional higher education, all intrinsically meaningful to me, also have all been put on an indefinite hold. I greatly miss engaging in a community aligned with my outside interests and meeting a greater sense of purpose. Self-acceptance ebbs and flows most days, which naturally impacts the final domain, positive relations with others. If an individual does not feel like they are flourishing, a rippling effect into other relationships can be expected.
All this is to say, caregivers feel tremendous strain. There are many days when the provision of basic life necessities are the only realistic activities to complete. I would like to offer this suggestion to those wanting to support parents like me. Offer a tangible, finite gesture of assistance. Rather than making a broad offer – Can I bring you dinner? Clarify it – “I can bring dinner over either on Tuesday, Thursday or Sunday this week” or “I can take the girls for a Sunday drive this month so that you can quietly tackle things around the house”. These more directive offers remove the pressure felt by the caregiver to make yet another decision.
Supporting a friend or family member like me is truly a subjective task for both parties involved, the supporter and the supported. It’s important to know that the caregiver role is an ever-changing landscape. Supporting loved ones navigating this life requires some reflection and finesse by both parties. In the end, and I say this delicately, trying not to “make that person’s life harder” may be a helpful mantra to start with when you are considering how to support caregivers.
References:
Namkung, E. H., Greenberg, J. S., Mailick, M. R., & Floyd, F. J. (2018). Lifelong parenting of adults with developmental disabilities: Growth trends over 20 years in midlife and later life. American Journal on Intellectual and Developmental Disabilities, 123(3), 228–240. https://doi.org/10.1352/1944-7558-123.3.228
https://www.sciencedirect.com/science/article/abs/pii/S0277953624011031
Joanne Huff comes to Courageous Parents Network as a long time follower and parent enthusiast of the organization. As the Mother of two girls, the oldest of whom has the rare disease MPS IIIA/Sanfilippo Syndrome, Joanne has benefited tremendously from the intimate parent interviews and candid, vulnerable story sharing throughout numerous thought provoking blog posts. As her daughter’s activities and lifestyle started to slow down with disease progression, CPN became a larger anchor in times of uncertainty and unrest. It is through this lens that Joanne hopes to share experiences and insights via the CPN blog.
Joanne completed nursing school after her daughter’s diagnosis, receiving her Bachelors of Science in Nursing from Plymouth State University, Plymouth NH. She enjoyed community liaison work with home care providers of adults with special needs up until her own daughter’s care became increasingly more involved. In addition to serving on the Boards of New England Regional Genetics Group (NERGG) and Adaptive Sports Partners through 2024, she has found great purpose in volunteer work advocating for policy improvements and change in Washington DC with the National MPS Society. In her free time, Joanne seeks balance and refuge with yoga, hiking and performing as an ensemble Soprano vocalist with the Pemigewasset Choral Society. When not blogging for CPN, Joanne enjoys sharing offerings on her personal Blog Folding Origami for God. She resides in Bow New Hampshire with her two daughters, Sasha and Nika, her husband Mike and her yellow lab Suki.
Perspective: Parent
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
Perspective: Parent
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.
Perspective: Parent
The mother of a young boy who is very medically complex describes the ways in which the health care system is burdensome for parents – gaps in coverage for nursing, miscommunication between hospital billing and insurers, gaps in information provided about community resources.