Theme: Advocating for your child

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: Advocating for your child

The mom of a boy – now 6 – born very prematurely talks with pride about how he has far surpassed early predictions. “He will show us what he is capable of.”

Theme: Advocating for your child

Every two years in the month of July the deadline for redetermination of Medicaid coverage looms. My daughter, approaching age 27, has received subsidized health insurance for well over two decades. Her diagnosis, the rare genetic syndrome MPS IIIA (Sanfilippo Syndrome), requires extensive medical surveillance. We are fortunate that its severe impacts, surrounded by developmental delays, seizures and a degeneration of the central nervous system, are greatly but not entirely supported by Medicaid. The trifecta of her syndrome results in not only an all-hands-on-deck approach within the household but, if I’m being forthcoming, also a tremendous financial burden to both the family unit and the taxpayer at large. 

I have long recognized and spoken of the financial burden that my daughter Sasha imposes upon the healthcare system. What I don’t often speak of is the financial impact her condition has on our household. The reality of both parents maintaining employment presents a logistical nightmare, as care management of a medically complex child is a full time job. Authorizations to obtain services are complex, and coordinating referrals, reauthorizations and appointments are commonplace in day to day life making parents both caregiver and case manager.

In Sasha’s early years, 1:1 supervision was required; she had the physical strength of a child her age but the cognitive awareness of an 18 month old. This made for numerous safety concerns and a need for her to always have eyes on her. Now in her older years the 1:1 supervision has been paramount for hygiene needs, feedings and positioning as she approaches a state nearing paralysis. Training in-home staff  in a high turnover field eats up extended time periods and often parents need to fill the gaps in care, making a professional career nearly impossible. I know the continuous financial strain that Sasha’s care has placed on our family all these years, but I am also acutely aware that I am one of the lucky ones. There is sufficient financial stability in our home to provide for the option for me to not work full-time. But I worry  – what are other, less fortunate families to do, especially in a political climate of intense governmental financial scrutiny, often by individuals far removed from the real life experiences of families like mine?  

We have also been fortunate with our healthcare system and medical team in the state of New Hampshire. In time we’ve found ourselves an incredible medical team of over 10 specialists that supports both Sasha’s physical health and her mental wellbeing. When we struggled to keep Sasha safe in bed at night due to frequent nocturnal seizures, her neurologist wrote a medical order for a “sleep safe bed”. At that same time, pharmaceuticals were slowly introduced until we found the right mix to halt a most harrowing seizure condition. When her mobility started to wane, multiple consults took place with equipment vendors, doctors and physical therapists to obtain a highly specialized gait trainer- a “walker” to keep her upright for bone health and moving safely through her world. A shower chair to support both her and our safety was introduced. 

Yet, these supports come with a price tag. Let me illustrate just a few. The out-of-pocket cost for the sleep safe bed would have been $10,000. The pharmaceuticals that have remarkably kept Sashsa’s seizures at bay for 12 years would cost $1800 per month without assistance from Medicaid. The out-of-pocket cost for the gait trainer to assist Sasha in safe ambulation would have been over $8,000 and the shower chair we rely on for safe sanitation charged our private insurance over $2,000. Thankfully, these items have all been covered either through our private insurance or Medicaid. While my family situation is secure, I can honestly tell you that bearing the responsibility for these costs without Medicaid, even with private insurance, would break any family including my own. 

But this is where so many families like mine sit – in that divide of who benefits and how the financial burden is shared. It is an uncomfortable conversation. I fully see and understand the financial implications that we as society face as we address heaping debt. And yet medical ill fortune could fall on any one of us in an instant. 

In nursing school, I had an opportunity to study internationally and perform clinical work with underserved and developmentally impaired communities. This time revealed the sobering truth of why robust medical teams, research and development and social services are so vital here in the United States. The support we have here in the US helps carry us in our day to day lives and it keeps my child living at home, where I want her to be, and where I know her care  is less economically burdensome to society at large.

I have long maintained that, to me, Sasha is truly one IN a million. The physical challenges coupled with the emotional toll of watching her vitality fade NEVER overshadows the joy she brings to my daily life. The lessons she has taught me about love and commitment and gratitude are forever at the forefront of my days. But one could also argue that Sasha is one OF a million.  From a financial burden standpoint, if you multiply the above-mentioned costs, you would arrive at a staggering financial total. 

Yet you can not try to tell me there is a price tag you can place on Sasha living to her fullest capacity. There is NO price tag on well-being. Is it costly? YES. But what I also know is that every single child struggling with a rare disease, however complex to navigate, deserves an unbridled full shot. We all do.  

I do not know what will happen regarding the bi-annual review of our upcoming Medicaid application. What I do know is that when individuals furthest removed from this reality have the power to make medically impactful legislation, for better or for worse, they may choose to contemplate price tags over human decency and physical health. Officially in the United States, we do not ration health care. But cuts to Medicaid are certainly going to do that. My aim is to not let that happen. 

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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.

Theme: Advocating for your child

My son was born 14 weeks premature. The odds were not in his favor, yet he’s proven that he’s an underdog to bet on. During his five-month stay between two neonatal intensive care units (NICU), I had many necessary yet hard and uncomfortable conversations with his care teams. I thought those would stop once we got home. I thought we were on our merry way to live our best life; but we were met with a barrage of soul-stealing and dream-crushing encounters. Each visit was an onslaught of apathetic and defeatist expectations. I understood the gravity of injuries sustained before, during and after his birth. I understood that I couldn’t change what had happened, but I could control how I interacted and loved him for however long he lived.

The purpose of this piece is two-fold.  For providers, it is to offer context of the impact of your words and offer suggestions on how to maintain the integrity and severity of the present reality while using loving and compassionate language. For parents, it is to let those who find themselves in a similar situation know that you aren’t alone. Here are ways to embrace hard-to-process decisions, acknowledge your grief, and how to find joy through the journey.

Fair Warning: This piece will include terms that I heard during my journey as both a parent and a professional in the field. I have intentionally kept these words in this piece. I did this so we can: (1) get comfortable with the uncomfortable; (2) confront and begin to address personal biases; and (3) see or move beyond the negative and get to the business of making the most of the life and time that we have.

Love Unconditionally

I was a first-time mom, with a micro preemie who would have a long, challenging life ahead of him. Many follow-up appointments were met with “he’s so sick” or “he is failure to thrive” or “he’s neurologically devastated, he’ll never walk so we won’t fix his hips” or “he’s going to be mentally retarded and not able to do anything.”

While I appreciate candid conversations, a minor shift could have helped heal my hurts and lessen my grief just a little. A simple “he’s yours and you love him no matter what” would have gone a long way. Even more helpful would be to hear, “His life is valuable and has meaning. It doesn’t matter how long or short of a time he is on this earth. It doesn’t matter how neurologically typical or neurologically devastated he is, his life matters. Love him not because of what he can do or who he’ll become, yet love him because he is your child.” or simply “Disability isn’t the end of the world. Disability doesn’t mean less than.”

I wish his providers had said those things. It doesn’t negate the prognosis; it humanizes my experience as a mother.

Live Fiercely

Disability can help you learn how to live life to the fullest. My son and I have done more things with and because of his disabilities than those without a disability.

Once a friend wanted to do something BIG with Noah – a four-day, 158-mile self-supported bike ride in Colorado – and I agreed! We had no idea what we were doing or how we were going to get it done, but we were committed to figuring it out. We had to ensure we all hydrated sufficiently a week before traveling. We had to navigate the airports and planes with all of our stuff. We had to watch for altitude sickness (I got it the worst and had to be taken down a few thousand feet so I could breathe). This is just a snippet of logistics. What came from the trip was life altering. We all grew personally. We met and worked with people who had never been around a person with disabilities. Noah drove for the first time. His participation enabled the Colorado Track-Chair Program to receive a grant to help others with limited mobility access the park in a safe and comfortable manner.  It was life-changing for all of us. You can read about it from our friend, Helen’s recap and watch the short video.

When we were sent home from the NICU and met with a barrage of specialists for lifelong appointments, I wish his providers would have said, “Create and live your (his) best life. Live to the best of your ability and don’t let disability be your limiting factor. Yes, there will be limitations, yet there are so many opportunities available if you learn how to adapt.” I also wish they would have encouraged me and shared the importance of making memories. I wish they had said, “Make memories. Every day you have breath is a gift and an opportunity to do, be, see, say more than the day before. Take advantage of the gift of time as you don’t know when it will run out.”

Noah and I have had many misadventures and we loved each one (not always in that moment). We learn and grow with every activity we attempt.

Dare to Dream

I had many dreams of what life would be like raising my child. I daydreamed what sports he would play and how I would teach him how to ride a bike. I planned out playdates with my friends and their children. I explored cloth diapers, making all his food, and even began looking into homeschooling curriculum. I was excited to take him on hikes and experience exploring nature together.

Many of those dreams were dashed when I was told he’ll never walk, talk, crawl or run. He’ll lose the ability to eat by mouth. That I could expect that he’ll be vegetative. As hard as that was to hear and more importantly to accept, I was committed to giving my son the best life and experiences that I could.

That meant we would try things and just see what happened.

Noah did crawl (not long or far, but he did it). He did walk (never unassisted but became skilled and confident as he walked the hall at therapy).  He’s ridden a bike (he hasn’t had one of his own yet due to cost). He’s driven a power wheelchair and track chair (in the mountains of Colorado). He beats me in bowling and has completed more endurance races than I can remember (triathlons, half and full marathons with the assistance of friends lending their legs). Noah has gone rock climbing, kayaking, horseback riding, zip lining and many other fun yet unexpected adventures.

Is it perfect? Yes, perfectly imperfect!  There is no such thing as perfect. Perfection is unattainable and pleasure-stealing for those that pursue it.

I wish his providers had said to me, “If you can dream or think it, dare to believe it, You can create it to happen. It may not look like everyone else and that’s okay.”  Really, that’s the beauty of it because we’re all unique.

Remember, if your child never tries, you know what the outcome will be, so what’s the harm in trying?

Advocate Unapologetically

You know your child best. You know their likes and dislikes. You know when they are happy, sad, content, or mad. You know when they are sick, well, and pretending to be one or the other. You know their quirks, nuances, and idiosyncrasies. You know your child, and what makes them unique. By knowing your child, you are their voice, until they can use their own. If you don’t speak up, who will? Providers do their best with the information that is presented, combined with their education and experiences. They are an expert in their field, and you are an expert of your child and family unit. Speak up so (and until) you and your child’s voice is heard.

Once it had been nearly 20 hours since Noah had been awake, alert, and active. This was not his norm. I took him to the emergency department, and he was admitted to the hospital. His health and demeanor continued to decline, yet it was overlooked because providers assumed this behavior was his baseline (due to his chart, diagnoses, and severity of medical complexity). I tried very hard to share and explain what baseline looked like for Noah and that there was something very wrong with him, despite me not knowing what was wrong. Thankfully a physician who was an active member of his specialist team, had cared for Noah for several years and knew what his baseline looked like, was assigned the case. With his help, we were able to identify one of the problems and begin to address it. What began as c.Diff morphed into toxic megacolon and septic shock in a span of 48 hours. It was a tumultuous hospitalization and experience. It was slow, yet Noah began to recover. His baseline attitude, demeanor, and infectious smile began to show up again. I captured him on video and began to show the team that initially cared for him at the beginning of this hospitalization. They were in total awe and disbelief that they were looking at the same kid.

I wish his providers had said to me, “Be assertive while remaining respectful. You are a vital member of the care team. You bring the story together and bring the whole picture into focus.”

Hope for the best yet prepare for the worst

As your child gets older, things may get harder if their condition doesn’t get better.  Fortunately, or unfortunately, medical equipment has slowly been making its way back into our home. I’m thankful to have it and saddened that my son needs it. It’s a constant reminder to live a good life so we can have a good death. Remember to acknowledge and celebrate the inchstones that make up the milestones even if unrelated to a diagnosis.

As he was born 14 weeks early, I knew the odds of survival were not in my son’s favor. There were conversations and a little bit of (death) preparation during his first month of life. For kids born prematurely, you might be having these generic conversations regarding risk and outcomes when various surgeries are scheduled. I wish my care team and I would have had the hard conversations about what a good death means to us and what that looks like. I wish his providers would have said, “Let’s talk about allowing natural death (AND) instead of only a do not resuscitate order (DNR).”

This type of conversation allows for parents to make hard, yet loving decisions.

Be prepared for the normal even when everything is so different

Doctors repeatedly told me what my son wouldn’t do. He won’t crawl, walk, or talk. He’ll lose the ability to eat and swallow safely. He will be mentally retarded and be unable to learn. With this type of message reiterated for years, why on earth would I believe that we’d ever reach puberty, let alone transition through it? Specialists who cared for my son ask, “How is Noah?” and we have general conversation. I give brief updates on his most recent or upcoming adventure. But before letting them go I’ll say “You told me everything not to expect, you didn’t tell me about tents in pants. I’m having a hard time with this.” I usually get a blank stare and then the light bulb goes off, releasing a grin or a burst of laughter. I wish his providers would have said, “Even as so much of Noah’s life is different, he is still a boy, and he might experience some of the things other boys do.”  I wish that when I brought up these typical things, the clinicians were courageous enough to provide guidance.

This would have prepared me for some typical experiences any other parent faces.

Listen carefully because sometimes the advice is there

I received two pieces of advice that have been my lifeline. Early on in our NICU journey, a nurse said, “Grieve your expectations. Grieve what you thought would be so you can enjoy what you have.” Although I didn’t fully grasp what she meant at the time, life events have described and defined the meaning. Those words have served me well over the years. I’ve learned how to acknowledge the feelings that come with the losses, while giving gratitude for the inchstones that make up the milestones.

“Find joy through the journey” was the other piece of advice given to me by the neonatologist that delivered my son. The first few months of my son’s life were riddled with life-altering events and conversations. Knowing the road would be a long, arduous, and emotionally charged one, this doctor gave me a gift. He planted the seed that happiness is a choice and something that I had control over. The trajectory of my son’s life was likely to be hard, frustrating, and sad, but I had the opportunity and choice to decide what I focused on. I opted to look at our time together as taking the scenic route to our destination. We would and continue to embrace the bends in the road (setbacks) and we wait with anticipation and expectation for the things that we’ll see and experience that wouldn’t be found had the direct route been taken.

Please hear me when I say disability isn’t the end of the world. Yes, it’s different. Yes, it can be lonely. Yes, it’s challenging, but so is life.  The attitude and outlook you have greatly influences the journey and outcome. Prognosis isn’t synonymous with quality of life.

I wish providers would have told me that.

Hear more from Naomi by viewing her video interview.

Theme: Advocating for your child

We don’t get to decide what children can or cannot achieve as adults. Our job is to give every child—not just those with disabilities—the chance to surpass our limited, adult-shaped expectations. Because here’s the truth: they will, whether we believe in them or not.

When our daughter was in first grade, I sought the help of an educational advocate to support me in drafting her IEP goals. At that point, I had spent eight years as a high school counselor, sitting on the other side of that IEP table. I knew how important it was to start with goals that presumed competence—something I wasn’t seeing in what the school had proposed. And I also knew that, without data, I couldn’t fight for the educational changes she might need later. So I reached out to a former special education teacher who now worked privately with parents for a fee.

I told her about our daughter—a brain cancer survivor—and asked only for a consultation on the IEP goals I had already drafted, trying to be mindful of costs. She listened, then reviewed my goals. And this was her response:

“I would like you to make sure the goals are appropriate based on her medical barriers, which might make them unattainable.”

I was stunned. I hadn’t expected someone advertising themselves as an advocate for children with disabilities to say something so limiting. I thanked her for her time, paid her, and chose not to expend the little energy I had left arguing. I was learning, with time, to preserve that precious energy for my daughter and my family.

Still, that moment left a lasting mark. It was the first time someone so clearly failed to presume my child’s competence. She was only six. And already, people were underestimating her—dismissing her potential without even giving her a chance to try.

That’s when my “Mom gut” kicked in. And then my brain followed with this truth: I don’t care if she doesn’t meet every goal. What matters is that we give her the chance to try. This life—her life—is too precious for imposed limitations. The world already presents architectural barriers for her mobility to move with wheels, and now she has to face this too?

Let me spell it out. When our daughter was diagnosed with brain cancer just after her 2nd birthday, we didn’t say, “Well, this is risky. She probably won’t make it through chemo, radiation to her baby brain, or the radiation necrosis that nearly took her afterward.” No. We assumed survival. We moved forward with everything we had to keep her alive.

And that’s the same spirit we bring to her education. Sure, schools aren’t obligated to go all-in like a parent does but a parent will leverage every ounce of strength, every resource, every connection—for the best possible future for their child. Her quality of life depends on her education and we cannot, must not, assume she can’t. She has already lived through more than most adults will ever face. Trust me: she deserves the chance to show you what she’s capable of. And such is true for ALL kids.

My greatest dream is that she outlives me. And if that dream comes true, I want to know I did everything in my power to equip her for that future—to foster her independence, her learning, her joy. 

A parent’s love for their child? It’s relentless. It’s fierce. It doesn’t underestimate. 

Neither should the rest of the world.

Theme: Advocating for your child

As a medical professional who grew up navigating the healthcare system with a diagnoses of Cerebral Palsy, a patent foramen ovale (PFO), atrial septal defect (ASD), and ventricular septal defect (VSD), I have experienced complex medical conversations from both sides of the exam room. These conversations—moments when providers must deliver complicated or difficult news—shape how families understand, cope, and advocate for their child’s care. Reflecting on my experiences as a child, a nursing student, and now as a nurse practitioner with specialized training in emergency medicine, I’ve seen firsthand the critical gaps in how providers approach these conversations.

When I was diagnosed with Cerebral Palsy as a young child, my parents’ introduction to this lifelong condition came from a physician who casually stated, “Your child is fine with the exception of her Cerebral Palsy.” That statement, though perhaps intended to minimize fear, fell painfully short of addressing the complexity of the diagnosis or providing the compassionate support my family needed. Those words lingered not because they were helpful but because they felt dismissive, leaving my parents to process their emotions and seek clarity largely on their own.

That experience, and others like it, deeply influenced my decision to become a healthcare provider. I wanted to be the type of clinician who could guide families through moments of uncertainty with clarity, empathy, and respect. I pursued nursing and eventually became a nurse practitioner, completing a fellowship in emergency medicine where I encountered some of the most challenging conversations providers and families can face. It was in this setting that I saw the importance of not only what providers say but how they say it.

The Patient Perspective

As a child navigating life with a complex medical history, I quickly learned that the way information is presented matters as much as the content itself. Providers who treated my parents and me with respect, took the time to explain things clearly, and validated our concerns made us feel empowered. These were the moments that fostered trust and gave us the confidence to make informed decisions. On the other hand, rushed or dismissive interactions—like the one surrounding my Cerebral Palsy diagnosis—left my parents feeling confused, unsupported, and even reluctant to ask follow-up questions.

The best providers were those who didn’t just talk at my parents but instead invited them into the conversation. They provided space for their questions, acknowledged the emotional weight of the moment, and offered resources to help us navigate the journey ahead. It wasn’t just about delivering information—it was about making us feel seen, heard, and respected.

The Provider Perspective

As a nurse practitioner, I’ve had the privilege of standing on the other side of these conversations. Through my fellowship in emergency medicine, I witnessed and participated in some of the most emotionally charged moments families experience. Whether it was discussing the results of a traumatic injury, addressing a life-changing diagnosis, or guiding families through end-of-life decisions, I quickly realized how critical it is to strike a balance between delivering facts and offering compassion.

I’ve seen providers who handled these conversations beautifully, breaking down complex medical jargon into understandable terms while acknowledging the family’s emotions and creating space for their questions. I’ve also witnessed, and admittedly experienced myself, moments where the delivery fell short—where time pressures, emotional fatigue, or lack of training made the conversation feel impersonal or rushed.

Emergency medicine is unique in that the stakes are often high, and decisions need to be made quickly. But even in these high-pressure environments, there are ways to approach families with empathy and clarity. I’ve learned that it’s not enough to share information; providers must also validate the family’s experience and offer support, even when the news is difficult.

Where the Gaps Lie

Despite the critical importance of these conversations, healthcare providers often receive little formal training in how to navigate them effectively. Medical education prioritizes diagnosis and treatment, but communication—especially complex, emotionally charged communication—is rarely given the attention it deserves. As a result, providers often rely on instinct or personal experience, which can vary widely in quality.

Parents, too, are often left to bridge this gap themselves. They’re expected to advocate for their child, ask the right questions, and make informed decisions, all while processing what can be overwhelming or devastating news. The result is a system where families and providers sometimes feel like they’re working against each other, rather than together, in the child’s best interest.

Why Parents Are the Key

Through all of this, one constant has stood out: parents are the most important advocates for their children. As a provider, I’ve seen time and again how a parent’s intuition, persistence, and willingness to ask tough questions can change the course of a child’s care. Parents know their child better than anyone else, and their insights are invaluable in helping providers understand the full picture.

When faced with difficult news or decisions, it’s essential to feel empowered to ask for clarification, seek second opinions, or request more time to process the information. A good provider will welcome questions and work with you to find the best path forward. If something doesn’t feel right, trust your instincts and speak up. Your role as an advocate is not only critical but also respected by the vast majority of healthcare providers.

Improving the System

While parents play a vital role, the responsibility to improve these conversations doesn’t fall solely on their shoulders. The healthcare system needs to invest in better resources and training for providers to navigate complex conversations effectively. This includes workshops on compassionate communication, access to mental health and social work support for families, and protocols that allow for adequate time to discuss challenging topics, even in busy settings.

Providers must also recognize that empathy and listening are as important as medical expertise. Taking the time to sit down, make eye contact, and ensure that families feel heard can make all the difference. It’s not about having all the answers but about being a partner in the family’s journey.

Moving Forward Together

As someone who has lived both sides of the patient-provider relationship, I know how daunting complex medical conversations can be. I also know how transformative they can be when handled with care and respect. My hope is that by sharing my story, I can inspire both parents and providers to approach these moments with greater empathy, patience, and collaboration.

• To parents: You are your child’s greatest advocate. Never hesitate to ask questions, seek clarity, or push for the care your child deserves. Trust your instincts and remember that you are an essential part of the care team.
• To providers: Remember that every word you say in these moments matters. Families will remember how you made them feel long after they’ve forgotten the details of the conversation. Approach these discussions with humility, empathy, and a commitment to partnership.

Together, we can bridge the gaps in complex medical conversations and ensure that every family feels supported, respected, and empowered. These moments are not just opportunities to deliver care—they’re opportunities to build trust and make a lasting difference.

Emma Murray is a dedicated nurse practitioner, born and raised in Rhode Island.  Her diagnosis of cerebral palsy has shaped her passion for advocating for children and families facing complex medical needs. She strives to make a difference both in her work and community through compassionate care and meaningful advocacy. Outside of work, she finds joy in volunteering and giving back to causes close to her heart.

Theme: Advocating for your child

I’ve been thinking about the word COURAGE and how it presents in parents caring for children living with serious illness. In a recent conversation with the dad of a now-young-adult-living-at-home-with-significant-medical-needs, I was struck by his comment that the encouragement of guy friends about how amazing and strong he was really annoyed him. Of course he was prioritizing and tending to the many needs of his child! Any parent would do the same. That’s what parent love looks like. Sure, the scope of the needs was off the chart compared to that of typical, healthy children, but rising to the occasion isn’t the same as showing strength. We each do what we have to do.

I know this, and I knew it when I named CPN Courageous Parents Network. So what is behind my conviction that these parents are courageous?

This is what I know in this moment, what I have learned and seen from our many conversations with parents in the Network:

Courage is in when parents ask their child’s medical team Why? or Why Not? or What else?

Courage is in when they say, No, we don’t want to pursue that treatment or intervention because we think that while it may extend life, it will also negatively impact quality of that life. It takes a lot of courage to put your child’s physical well-being before your own emotional well-being.

Courage is when they say Yes, we do want to pursue that treatment, despite your recommendation to the contrary, because in our heart we believe it is the right thing to do.

Courage is when they intuit that their child will likely not be the exception.

Courage is when they intuit that their child likely will be the exception.

Courage is in when they express gratitude for small victories on Day 21 of their child being in the PICU.

Courage is in when they acknowledge their needs and isolation and ask for help.

Courage is in when they open their doors to invite the community in.

Courage is in when they sit alone with their fears and their grief.

Courage is in when they feel the joy amidst the sorrow.

Courage is in when they have that good cleansing cry.

I am currently reading The Things They Carried, by Tim O’Brien. As noted on the backcover, it is “a groundbreaking meditation on [the Vietnam] war, memory, imagination and the redemptive power of storytelling.” It is exquisitely written. It almost overwhelms with how thought-provoking it is. I mention it here because there is a chapter, or story, called “Speaking of Courage” in which the character in the story is reflecting on something he was part of in Vietnam. “He wished he could’ve explained some of this. How he had been braver than he ever thought possible, but how he had not been as brave as he wanted to be. The distinction was important.”

Put another way, he did the best he could but his best wasn’t as good as he wanted it to be. Ooff!

At Courageous Parents Network, we know that parents are naturally more courageous than they ever thought possible. And our unwritten, unofficial mission is to help them be as courageous as they want to be be for their precious child and family.

This photo was taken 3 days after Cameron’s diagnosis. I am putting on a very brave face. I had no idea what I was capable of, and I was terrified I wouldn’t be able to do whatever it was I’d be called to do for my family.

Theme: Advocating for your child

August and September signify the beginning of a new school year. When we were kids, we felt the energy abuzz as we prepped for the new year ahead with fresh school supplies and new outfits, fears and excitement for a new teacher and new friends, and the anticipation of new activities on the horizon. It is natural for parents and teachers like myself to feel that similar energy. However, for parents of children with complex medical needs,the excitement can be clouded by additional stressors. Whether you are sending your child to school in person,or engaging in home based , or hospital instruction, my guess is that you have found yourself wondering at least one of the following questions:

• Will the new teacher “get” my child? 
• Will my child have all of their medical and nutritional needs met? 
• Will sending my child to school in person expose him or her to a variety of seasonal illnesses?
• Will my child benefit from school? 
• Will my child make friends despite his or her unique conditions? 
• Will my child be too socially isolated because he or she receives home instruction? 

As a teacher of students with complex medical needs, I wonder about some of these very questions as well. You may believe that the world sees your child as “hard to engage” or “hard to understand” for many people who work with them. These thoughts are completely understandable and I have heard them time and time again from the families I have worked with over the years. But I can assure you of one thing: Teachers WANT to get to know your kids. They WANT to engage!! 

As parents, you are the biggest advocates and cheerleaders of your children. You often need to be the voice for your child, especially if your child is non-verbal. I would encourage you to start by communicating to the new teachers everything your child likes or dislikes. What motivates him or her? What are ways that you know your child is content or happy? How do you know if your child is upset? How do you know if your child needs something? Since many of our kids communicate in different ways (gestures, body language, facial expressions, verbally, with AAC Devices, etc), it is important for you as a parent to list each mode of communication complete with examples so teachers can better know and then better teach your child. Even if you do not think it is relevant to the school or educational environment, tell the teacher anyway! You never know what can be incorporated into lessons or activities at school. Does your child explode into giggles when you drop things on the floor accidentally? Tell the teacher! This activity can be incorporated into read aloud activities easily and promote communication opportunities.

Ultimately, the parent is the expert on their child. Tell teachers your secrets for meaningful connection with your child. Every child, no matter the complexity of their conditions and medical status, can communicate, and already is communicating–it just may be that the ways they are communicating are subtle and unique. A great teacher, just like a great doctor or medical provider, will turn to the family as the best interpreters of what their child is “saying,” and will observe closely and patiently to read those same signals from the child themselves.  

As a teacher, I enjoy the challenge of incorporating student interests and adaptive equipment. So many of the students I have worked with over the years enjoy being read to, including music and funny sound effects in instruction, slapstick jokes and the playful use of sarcasm, and oddly specific topics. It is such a joy when everything can be combined into one lesson! Again, I know that you may not think that certain specific or unique child interests could be relevant to school but they contain a special magic! So many of my students have found “potty humor” to be funny. Farts and poop jokes are pretty much always a hit. This silliness helps to provide opportunities to build rapport between school staff and students. Also, toileting is a major part of children’s lives. Did you know there are so many books and games out there in the world about farts? AND they are educational! I have built whole lessons around the gastrointestinal system complete with AAC devices that say “ew gross” or “that’s so cool” and I even have a switch-adapted fart machine. While I initially get strange looks from coworkers and parents, more times than not, those strange looks quickly change to smiles and laughter when they see how successful these tools and approaches are in helping a child “come out of their shell.” Seeing kids engage in activities is so meaningful and special, no matter what the topic may be. 

A great way to relay all of the specific information about your child is through an “All About Me” page. These handouts are familiar to teachers, as they are commonly used in the schools at the beginning of the school year. In the worksheet, include interests, likes, dislikes, sensory preferences, modes of communication, and whatever else is relevant to your child. These documents are also helpful for the medical teams working with your child as well. I have created them for doctors, child life specialists, and therapy teams. I have found that these documents help communicate important information when parents are not physically present or are unavailable. They also help at times of transition.

Transitions are difficult, and the back to school season definitely can be as well. Collaboration between families and the educational team is absolutely critical to supporting a positive, productive start to the school year, and great teachers are ones that will welcome that partnership. This also applies to medical teams. Remember, every child is a learner with their own strengths, challenges, and goals, all kids benefit from meaningful school experiences, and there are always ways to maximize potential no matter what the circumstance is! Lean on your support systems and school staff when needed. It takes a village!

Kristin Hutchison, MS. Ed., is a special education teacher with specific expertise in supporting students who have severe and multiple disabilities and complex communication needs, and in augmentative and alternative communication (AAC). She additionally serves as adjunct faculty at Hunter College, CUNY, in the graduate special education teacher training program. Kristin is the product of a NICU Nurse mom and a special education teacher dad, and since childhood she has had a passion for connecting with and providing positive opportunities for diverse children with complex medical needs. When not working, Kristin likes to spend time with people who “fill her up,” reading, watching the newest TV series, going to concerts, and cuddling with her fluffy dog, Ralphie.

Theme: Advocating for your child

I’m sharing the things that have worked for me. I’m sharing the things that I’ve discovered work for me for not only my son to have a successful school year, but for his teachers, the team and myself as well to have a good year as well. I write this as a mom of a 15-year-old who is in the eighth grade and who has repeated every grade except pre-K (He would have had I known that was an option). I write this as a mom of a child who experienced neglect in the classroom resulting in harm. I write this as a mom who took legal action against the school district. I write this as a mom who is known as THAT mom, and it is a title that I proudly carry. I write this as a mom who not only wants my child to be successful but wants that for yours as well. This is the blueprint that I use for my family, son, teachers, and team to have successful school years. Some of these tips may work for your family, others may not.

This is the first year that I’ve not posted any pictures or had any rants about open house or the first day of school drop off or pick-up. Wondering why? Because we didn’t go! My son missed the first week of school due to our cross-country road trip! And I was completely okay with it. All of his supplies and everything that he needed were dropped off early, so he was set for the new school year whenever he arrived. There was no stress, anxiety, or frustrations. It was the best back to school experience I could have asked for.

Expectations

• What do you expect of your child?
• What do you expect of the teacher(s) and district?
• How do you convey these expectations?

Record Keeping

• If it’s not in writing, it didn’t happen.
• Follow up every meeting, phone call, hallway/classroom chat (if decisions were being discussed) with an email.
• If it’s not in writing it didn’t happen.

IEPs/504

• Take someone else with you, even if simply for moral support.
• Have your child participate in the meeting – part of it if not all of it.
• Know your rights (this should be given at EVERY IEP meeting).
• You can call a meeting any time during the year; it’s not limited to once a year.

Supplies

• Use the patient portal as much as possible to get physician signatures on med forms and plans of care (seizures, respiratory, etc.).
• Contact insurance or home health company and request double supplies (ie g-tube extensions) so there is a set in the classroom. Pharmacy: ask for an extra bottle with the current label for school use. This cuts down on sharing meds between home and school.

Let Go

• Refer to your expectations.
• Know that bad things may happen.
• Accept that you can’t control everything and still expect growth and independence to happen (whatever independence looks like for your child).

Typical vs Normal

• Understand what your “normal” is and ask what “typically” happens in that grade. What field trips are there? What class presentations, plays, sports, etc.
• Ask and learn what activities and programs are available for your child in the school and the district.
• Attend your district’s board of education meetings to be better informed of the typical experiences and priorities of the district.

Open House/School Events

• Be cognizant of your stress level and what you can handle without losing your mind.
• If you absolutely want to have the experience, go at the very beginning or right before it’s over.
• I highly recommend scheduling a time to go a day before to avoid the inconsiderateness that ensues with the madness.

Ask questions

• Ask all the questions you have and repeat until you have answers that make sense to you.
• Know the chain of command or hierarchy in the school and district.
• Take notes and follow-up in writing. Refer to #2 Record Keeping
• ASK ALL the questions you have and repeat until you have answers that make sense to you.

Gather resources

• P2P USA – https://www.p2pusa.org/
• Parent mentor (many school districts have them).
• Learn or get a cheat sheet of the alphabet soup that accompanies receiving special education services.
• Think College – https://thinkcollege.net/

Create a support system

• Other parents.
• Previous teachers, therapists.
• Community based organizations and/or clubs.

Have other tips to offer or want to hear more about a certain tip? Reach out to me at connect@courageousparentsnetwork.org

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Naomi D. Williams is a perfectly imperfect person on a mission to empower individuals and families to live their best life, now. As a Life Doula, she helps people navigate and process major life altering events. Naomi believes anyone and everyone can and should lead an exceptional life. She is the proud mother of a former 26-week preemie who lives with a host of diagnoses that fall under the primary umbrella of spastic quadriplegia cerebral palsy. She uses her and her son’s past and present experiences to inform and partner with healthcare systems as they live out the consequences of not being considered a valuable member of their care team. Naomi is the author of And God Remembered Noah: A mother’s heart-opening journey through 22 weeks in the NICU. When not advocating for her family or others, you can find Naomi getting lost exploring nature or taking a deep breath on her yoga mat. Find her at exceptionalliving101.org , Noahland.Art  and on LINC-d. com or Linked In

Theme: Advocating for your child

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Theme: Advocating for your child

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Theme: Advocating for your child

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