Altered by Love

There is the motherhood we expected; and then there is the one we actually get and live. This Mother’s Day, three Courageous Parents Network team members—each currently parenting a child with medical complexity—share what it means to mother in a reality shaped by intensive caregiving and uncertainty. Their reflections hold the stretch, the weight, and the quiet, enduring devotion of this parental journey. To all of the beautiful powerful (seemingly) tireless mothers in the Network, we wish you a Happy Courageous Mother’s Day. Enjoy these honest reflections.

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“I’m a mother, but too often I have to remind myself to feel like one. Instead, out of necessity and without formal training, I have to be my son’s care coordinator, social worker, administrative assistant, advocate, personal care assistant, and unskilled nurse. I’ve learned so much and gained these skills because I became a mother of a child who needed me to fulfill those roles. But in the daily struggle to meet his needs, I’ve lost the simple, grounding feeling of just being ‘mom.’ My goal, for this mother’s day, is to lean into doing the activities with my child that quench and quiet the yearning in my core to feel like a mother, nothing else. I want to enjoy motherhood, not endure it.”

Naomi Williams CPN Associate, Social Media

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“For most of my life, Mother’s Day was something I showed up for on behalf of others. I celebrated with my mom, who I’m incredibly lucky to have and who remains one of my closest friends. Meanwhile, I quietly carried my own grief alongside the joy. I had always dreamed of being a mom, and for a long time I wasn’t sure that would be part of my story. On my first Mother’s Day, I was pregnant with Owen, still unaware of his prenatal diagnosis. That day felt full of possibility—daydreams, hope, even a few happy tears. I remember a deep sense of peace, holding onto what might be, without yet knowing how profoundly motherhood would reshape me.

Now, as Owen’s mom, Mother’s Day is both everything and not quite what the world imagines it to be. He is the best. Being his mom is the greatest gift of my life. And yet, the day doesn’t look like the days I shared with my mom when I was a kid. There’s no breakfast in bed or handmade cards, no getting dressed up and heading out for brunch. Instead, I hope for a good day—for Owen to feel well, and for the caregiving load to be a little lighter for both me and my husband.

A mentor once shared something that has stayed with me: our medically complex children look to us with the same depth of need and connection as a newborn looks to their mother—not to diminish who they are, but to honor the intensity and beauty of that bond. It’s deeper, more constant, and profoundly meaningful. So, with that framing, while Mother’s Day may still sometimes feel like a day for others, I know I get to celebrate being Owen’s mom every single day. Every bit of it—the love, the exhaustion, the literal blood, sweat, tears, and yes, even poop—is worth it for the privilege of being his mother.”

Lindsay Topping, CPN Associate, Parent Champion

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“This Mother’s Day, I’m starting the day with a nice, long stretch. My son’s body depends on my care; and he has recently gone through a growth spurt. I’m achy from caregiving. I need to stretch more.

But this version of motherhood has stretched me in more important ways. I’ve had to stretch my perspective to see small gains in his coordination and communication as monumental to his development. I’ve expanded my understanding of what a joyful life looks like. I’ve enhanced my creativity to make play possible in therapy gyms and hospital beds. I’ve broadened my thinking from focusing on afterschool activities to weighing decisions about surgeries, quality of life, and how our whole family copes best.

So yes, I need to stretch physically. But more than that, motherhood has stretched me well beyond my original, expectant capacity. I am still a mother, stretched and still stretching.”

Laura Will, CPN Associate, Story Curation

I’ve always used social media as a mental getaway. Until recently, I wasn’t someone who felt drawn to share my life publicly or curate it like the accounts I followed. I scrolled through posts for entertainment primarily. It all felt distant from who I was, so I never had a desire—or a reason—to participate in that way.

When I found out I was pregnant, I started following other mothers—watching their journeys through pregnancy and early motherhood. But not long into my own pregnancy, I realized my path wouldn’t look like theirs. Following an abnormal fetal ultrasound at 19 weeks, I knew this wouldn’t be a typical motherhood experience.

All of a sudden, I didn’t see my life reflected anywhere online. And for a long time, I thought that meant this atypical journey wasn’t meant to be shared.

I deeply craved connection, especially with other mothers navigating medical complexity; but I was afraid. Fearing judgment, misunderstanding, or unsolicited opinions about deeply personal medical decisions, I worried about how my daughter would be perceived. Privacy felt like protection. It felt like the safest way to shield something that was still so tender.

But over time, that same privacy became isolating.

I feared how others might see my daughter. I feared assumptions about her differences, and about me as her mother. My heart was tender. I was quietly grieving the version of motherhood I had once imagined, while also longing to connect with others who understood this unexpected path.

For a long time, I held both of those truths privately.

It took me over a year to feel ready to let even a small part of our story be seen publicly.

I didn’t start sharing because I felt confident. I started sharing because I felt alone. Eventually, my desire for connection outweighed my fear.

I began small. During a family weekend away, I documented what tube feeding looked like outside of our home. I shared during Tube Feeding Awareness Week—something personal and vulnerable, but not our whole story.

The response surprised me.

Some messages came from mothers walking a similar path, finally seeing themselves reflected. Others came from people who wanted to learn and better understand. And some were simply quiet expressions of support from people I hadn’t heard from in years.

Through that, I began to find a sense of connection.

The most meaningful connections haven’t come from likes or comments. They’ve come from private messages that say, “This feels like my life too.”

The community I have found isn’t loud—it was deep, real, and often private. It looks like DMs, text messages, and shared understanding. It looks like celebrating inchstones instead of milestones. It looks like connecting with other mothers and even medical professionals who understand both the clinical and lived experience of this kind of motherhood.

It looks like not feeling so alone.

But social media hasn’t been entirely easy.

As I began sharing more, I also felt a new kind of pressure—the internal question of “Should I film this?” or “Should I share this?” It started to pull me out of the moment and into documentation. My screen time increased. My mental load grew.

There are still days when it feels overwhelming—when I want to step back, delete the apps, and just be present without the noise or comparison. Sharing your story doesn’t mean it becomes natural or easy. I didn’t start sharing to build a platform or turn this into something bigger—I started sharing to build connection. And I’m still learning how to protect that intention.

Over time, I’ve found more of a middle ground. I no longer share to keep up—I share when it feels meaningful. I’ve shifted from obligation to intention: connection over performance, meaning over metrics.

I don’t share everything, and I don’t only share the good—but I share with purpose, because I want to help others feel less alone, create space for stories that don’t fit neatly into categories, and gently challenge assumptions while reducing stigma around children and families living different kinds of lives. I share to build the kind of community I once searched for. And maybe, by sharing a little more of our real lives, we can make that in-between space feel just a little less lonely.

I was certainly late to the party. It wasn’t the first time, but this particular soiree had consequences. Some doors don’t stay open forever. Too late, and you don’t just miss the moment, you lose the chance entirely. And that finality, that reality, could really sting.

For me, the “party” would be having another child. I experienced a decades-long internal debate of whether or not to expand our family after Sasha. During the years that it was more or less expected of me by society to be growing our family, many well intended individuals asked, “Do you plan on having another one?” My answer never needed much prompting. No, I did not intend on having more children.

Sasha has a rare genetic condition known as Sanfilippo Syndrome. From logistical to emotional, there were a wide range of reasons why Sasha should remain an only child. Primarily, as someone who tends to be mentally scattered in many different directions, it felt like an insurmountable task to add an additional individual who would be dependent on me for their survival and wellbeing. I felt capable and competent in caring for Sasha, because it was solely Sasha. There was a balance in the scheduling, transporting, caring for and worrying about one child. Any hiccups or new medical events weren’t as overwhelming because I did not have another individual to schedule, transport, care for or worry about.

There were other reasons too. Namely the realization that bringing another individual into the world meant that a child, however young and tender, would ultimately endure the death of their sibling. Despite having no idea who this imaginary child might be, it absolutely broke my heart just thinking about that scenario. If I could minimize the rippling effect of that loss – let it end with me and Sasha’s dad – perhaps that would be one small victory in an avalanche of sadness.

When Sasha was three years old, her dad and I split up. Two years later, when I met my now husband, I told him that I did not intend on having more children. That declaration of decisiveness gave me a sense of control. This also meant I could dodge the guilt-ridden feelings I knew awaited me if I was not completely dedicated to solely Sasha. He understood my position, though I’m not sure he held it himself; and so we moved through life for a few years without concerns about family planning.

Sasha’s diagnosis was discovered during this time, which had me doubling down on my position. Sanfilippo Syndrome is autosomal recessive, only resulting from two copies of a faulty gene, each inherited from a parent. The fact that my second husband did not have this faulty gene erased the concern of having another child with the same condition. Any child with my second husband would only have the possibility of being a carrier of the condition, as I am. Regardless, I had chosen to avoid all potential outcomes, and simply care for Sasha.

But something happened when I turned forty. We had just bought a home and were settling into a rhythm, when my husband suggested we start a family. I was stunned. Yet for some unknown reason I thought, “Why not?” I was forty after all, and I knew the chances of getting pregnant were low. When I got pregnant, I was stunned once again, and then even more so by the rollercoaster of an early miscarriage mere weeks later. How sad the whole ordeal actually made me was what shocked me most of all. What if I had been wrong all along? I was being practical all those years, adamantly insisting that one child was manageable. What if, in my pragmatic attempt to control the outcome of loss for another sibling, I had lost sight of the fact that none of us can really control any outcome? I realized I might miss the party, while maintaining my calmer, cleaner, simpler calendar.

In that brief conversation initiated by my husband, we changed course and fully committed ourselves to expanding our family. After struggling to get pregnant a second time naturally, the harrowing and complicated journey known as in vitro fertilization (IVF) began. We had been given low teen percentile success rates with each IVF cycle. By age forty-two I’d had two failed rounds of reproductive endocrinology interventions and was encouraged by my provider to consider other options. We were at the end of the road – a road I wasn’t so sure I should be on in the first place; but one I so desperately wanted to return to only to learn that all the on-ramps had closed. After two years of evaluating the myriad of emotions that come with closing a door to what could have been open if I’d been punctual, I finally shut that door for good. I was back to my original plan. Sasha would not have a sibling to change her life’s balance. We would not feel the burden of juggling too much, and a sibling would never know the pain of losing Sasha. It all finally made sense. A full circle closed, and I felt a sense of restored peace.

I wish I could adequately convey my shock then when I found out I was pregnant the day after my 45th birthday. My birthday itself started out pleasant enough – sunshine blazing, vibrant summer greens around our front porch and clear, electric blue skies. Yet I did not know why I felt so incredibly off. I forced myself to go for my usual run, despite my feet feeling like cinder blocks. I made myself finish my morning coffee, even though it brought little joy. I ate voraciously, yet had no interest in a celebratory birthday margarita that night. It was all so atypical. The next morning, when my morning coffee was still incredibly unappealing, it gave me reason to pause. There was no way… was there? I was far too old at this juncture, but what else could it be? The mere idea of a pregnancy test felt slightly embarrassing, but I still had some (very expired) test sticks from the IVF chapter a few years before. The strip immediately came back positive. What an ugly joke. I recalled the spreadsheet of success rates given to me in an educational IVF brochure a few years back. At forty-five, I now had a paltry 3-5% chance of a “live birth” resulting from a natural conception. There was no way this would be successful.

Despite the nine-month saga of a high risk geriatric pregnancy during a pandemic, lo and behold a 6 lb. 14 oz. baby girl was born via cesarean section on February 27th 2021. It is difficult to encapsulate that day, or those weeks or months that followed. The adjustments, the worries, being a novice all over again. Not knowing what milestones to expect with a healthy, typically developing baby. Was she in fact a healthy, typically developing baby? What I did know was that having the choice taken out of my hands was perhaps the only way for this newly expanded family to ever launch.

We are five years in, and I can now say what an extraordinary thing it has been to get to hear one of my children call me “Mommy.” Nika’s health has offered some healing. And yet, I now experience anticipatory grief for Nika. I am fearful about the day when she learns her sister has a terminal diagnosis. I wonder how she will learn that news. I feel in my heart that she should learn that revelation from me. While I am forthcoming answering Nika’s questions, such as why Sasha no longer does something she sees her once doing in an old photograph, I am not sure if Nika senses what that foreshadows. I have not yet broached the issue of Sasha’s impending mortality.

Fellow rare disease moms I have spoken with have, understandably, varying viewpoints on how and when to bring this topic up with a sibling. Some chose to let it develop organically, others opted to be proactive and initiate the discussions. Genetic counselors and palliative care providers are a tremendous resource as we approach these discussions. No choice is wrong. As long as we can be honest with ourselves, then I think we’re doing right by our children.

In this burgeoning era with Nika, I live in an entirely new world, as does Sasha. I see how much of a priority Nika has become, and I witness daily how Sasha is often second in line in my attention. I am hyperaware that these past five years would have looked so different for Sasha had we remained on the original path. But I am also aware of the energy and joy Nika has brought into Sasha’s world – this tiny powerhouse who performs dance routines, gymnastics shows, and belts out “let it GOOOO” for her every single day. I am in awe of how much Nika loves the beauty of trees, just like Sasha always has. I can still envision Sasha, at the onset of each spring, gazing up at the branches high above her. In my memories, she is beaming, smiling so broadly. Today, Nika asked me to pull the car over to the side of a tree-lined road so she could actually hug one. They have shared love, facial expressions and a shared language, even without words. Yes, it is hard, every day – the scheduling, transporting, caring for and worrying about two dependent children instead of just one. One child is medically complex and deserves more from me than I can always give her. The other I so deeply wish could play with her sibling the way the neighborhood kids play with theirs. I hope that none of us will ever have to endure the loss of Sasha. But every day leading up to that inevitable day, and all the days before it and after it, I will feel lucky that there was more love than I knew how to plan for, that our family grew beyond what I thought I could hold.

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.

On Practical Wisdom as the Art of Excellence

“For the man who is truly good and wise bears all the chances life becomingly and always makes the best of circumstances, as a good shoemaker makes the best shoes out of the leather that is given him.” — Aristotle, Nicomachean Ethics I.10

The alarm goes off at 2:47 AM. Not the clock but the pulse oximeter, which is a different animal entirely. My wife and I are moving before we are awake, a choreography so practiced that our bodies have memorized it faster than our minds have. Check the probe. Check her color. Check the rise and fall of her chest against the ventilator’s steady rhythm. My child is fine. It was a positional issue and the probe shifted on her toe. We resettle her. We resettle ourselves. The monitors quiet. The house resumes its mechanical breathing.

We lie back down. Neither of us sleeps.

In the dark, I find myself doing what I often do after the adrenaline has no more work to do: I begin to think through the night’s decisions. Did we make the right call? Should I have checked her temperature as well? What if it wasn’t just the probe? Was I too slow, or was I, in fact, exactly the right speed? This is not anxiety, or not only anxiety, but something more deliberate. It is a practice I did not choose so much as grow into, the same way a callous forms by repeated contact with rough material.

The ancient Greeks had a word for this practice. They called it phronesis. We translate it, a little flatly, as “practical wisdom” or “prudence,” though the philosopher Aristotle meant something far richer. For him it is the cultivated ability to perceive what a situation actually requires, and to act accordingly; not from rule, not from habit alone, but from a deep, seasoned attentiveness to the specific gravity of this moment, with this child, in this particular kind of dark.

If you are a parent of a medically complex child, you are already practicing phronesis. You may not have a name for it; but you know it.

Practical wisdom is not expertise in the clinical sense, though it can include clinical knowledge. You may have learned about the half-life of the rescue medication, the therapeutic index for various seizure meds, or the subtle differences between voltage-gated sodium or voltage-dependent potassium channelopathies. That knowledge is often necessary and always hard-won. But it is knowledge of universal facts that hold steady regardless of circumstance. Phronesis is different. It operates in the territory that textbooks cannot reach, the territory of particulars. Particulars like the specific quality of the cry that precedes a tonic-clonic, or the three-second window before a coughing fit becomes a desaturation.

Emma does not seize the way much of literature describes. She does not pale before; she flushes first and pales after. She does not stiffen first; she goes quiet. The monitors may say she is stable when, if you know her, you can see—by the particular set of her jaw and the way her hands are clenched—she is not okay. Something is building. This is not instinct, though it can look like instinct from the outside. It is the accumulated, deliberate act of paying attention over time. It is the eye of experience. And it is, in the fullest sense, a form of practical wisdom.

The practically wise parent recognizes that no protocol covers every situation because luck, that indifferent variable, regularly produces situations for which there is no protocol. Phronesis is what you exercise in the gap between the protocol and the moment. It is the ability to deliberate well under pressure, to hold two or three possible courses of action, weigh them against the specific texture of right now, and move. Not perfectly; but well enough. And then, afterward, in the dark, to review your actions—not to punish yourself, but to refine.

This is how practical wisdom grows. It is not given. It is made, in the repetition of hard nights.

There is a version of parenting advice that implies good parents are simply people with good intentions and warm hearts. This is not wrong, exactly, but I think it is insufficient. As they say, a sharp tool in untrained hands is a liability. Likewise, intention without discernment can cause harm in the most sensitive places such as the exam room, the IEP meeting, in the 2:47 AM alarm.

Our situation and things in it are akin to tools. Wealth, strength, access, opportunity. All of these are not good in themselves. They are instruments. A hammer in the hands of someone who does not know what they are building is just a thing that damages whatever it touches. But in the hands of a craftsperson, it builds something that lasts.

The same is true of everything that comes to us by luck; including the good luck of having a strong advocate for a partner, a generous specialist, a good insurance plan, a smooth stretch of weeks. These things are genuinely good. But they do not automatically make you a good parent. Practical wisdom is what converts good fortune into good action. It is the skill that looks at a stable week and asks, ‘What do I do with this?’ Do we push for the therapy evaluation we have been delaying? Do we rest, because rest itself is preparation? Do we make the phone call we have been dreading?

The prudent parent is not simply reactive, they are responsive. Reactivity is your nervous system’s answer to a crisis. Responsiveness is your character’s answer to each of life’s challenges. One is automatic. The other is cultivated.

There is an analogy, again borrowed from Aristotle, that helps illustrate what this kind of wise response to life looks like. A good shoemaker makes the best shoe possible from the leather available. Not the shoe they wished they had leather for. Not the shoe they could make if the leather were different. The best shoe from this leather, right now. A good parent makes the best of the circumstances they have. Perhaps that includes working to improve those circumstances, but it is not a life spent fantasizing about what they wish they had.

This is the practical wisdom available to us. Not the wisdom of better circumstances, but the wisdom fitted to these ones. The ‘leather’ of our situations—the diagnosis, the prognosis, the limitations of a body that requires extraordinary maintenance—are often poor by any conventional measure. And what’s more, our children’s lives are housed in systems that regularly treat them as line items instead of human beings. There is a relentless, compounding fatigue that makes every decision feel weightier than it should. And yet, something is still being made from this. I see it when my wife navigates a prior authorization call with a patience that has iron in it. A patience deliberately chosen because she has learned that fury spent carelessly accomplishes nothing for Emma, while fury channeled into clear, firm, documented language sometimes opens a door. That is phronesis. That is a shoe being made from difficult leather.

I see our good parenting in the 2:47 AM deliberation. It is instinct that is not quite instinct, the fast, practiced assessment that looks effortless only because it has been done hundreds of times and each time, slightly refined. I see it in the ability to hold open the question: what does she need right now? Not what does the monitor say? Not what does the protocol dictate? Instead we ask, what does she need, now, from us? We answer it well, or well enough.

There is one more thing worth naming, because it surprised me when I came to understand it. Practical wisdom does not eliminate bad luck. It does not, in the final accounting, protect Emma from the facts of her condition. What it does is reduce the surface area where bad luck can do additional damage. The practically wise parent is harder to catch off guard. This is not because they are unfeeling, but because they have learned from the work of attending to their child, to their own responses, to the difference between what they can control and what they cannot. They carry what they are choosing to carry; but, they carry it with technique.

You are already doing this. You do it in ways you probably do not credit yourself for, in the middle of the night, in the fluorescent offices, and in the ordinary hour when you look at your child and know—just know—what they need before they can ask.

That knowledge is not nothing. It is, in fact, everything. It is the good shoemaker’s art. The art of the excellent parent. The Good Parent.

And it belongs to you.

Phronesis is not a skill you acquire and then possess; you cannot develop it by reading about it. It is a practice which means it requires a repeatable form. Over time, I have come to rely on three questions I return to when the situation is unclear, the stakes are high, or I have just acted and am lying in the dark wondering if I acted well.

The first is: What does this moment actually require?

Not what do I fear? Not what does the protocol say? Not what did I do last time? The question I specifically ask is: What does this child, this hour, this specific circumstance actually require of me right now? This question slows the reactive nervous system just long enough for the responsive character to engage. It is the perceptual move that phronesis begins with: seeing clearly before acting.

The second is: What is the best I can do with what I have?

This is the shoemaker’s question. It releases you from the fantasy of better leather, the better diagnosis, the better system, the better version of yourself who got more sleep. It returns you to the only territory where excellence is actually possible which is here, now, with these resources, these constraints, this child. It is a question of radical presence. And it is, in my experience, the one that most reliably converts frustration into action.

The third is: What will I do differently next time?

Not what did I do wrong? That framing would lead to punishment, not refinement. Instead let’s ask, What will I do differently next time? This is the 2:47 AM question, the one I ask in the dark after the adrenaline has no more work to do. It is how the callous forms. It is how the instinct that isn’t quite instinct gets built, slowly, out of repetition and honest attention.

You don’t need to ask all three in sequence. Some moments only call for one but they are portable enough to carry each at all times. They fit in the exam room, the insurance call, the ordinary hour when you look at your child and feel the full gravity of what is being asked of you.

This is not a fix. These questions won’t lift you out of crises; but they will help you carry your burden with technique. A technique which, over time, becomes something very close to wisdom.

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.

There doesn’t seem to be a word to describe what it feels like for a parent to first hear the name of their child’s diagnosis. I tried to name the feeling – catastrophic, devastating, scary.

None of these terms fully encapsulates the experience; the way the name of the disorder stuns and disorients. What word describes what it feels like to live inside a snow globe that is suddenly and violently lifted and shaken relentlessly?

My blonde-haired, round-faced, full-smiled, running-never-walking, 3-year-old Anni couldn’t possibly be the bearer of such a complicated term like “mucopolysaccharidosis.” She could easily navigate a playground, a dinner plate, and a preschool classroom. How was she going to navigate a disease that would relentlessly steal her skills, leaving seizures and a feeding tube as a consolation prize?

I didn’t know on that diagnosis day – the day I sat on my living room floor hearing the words, “Don’t Google it” – how much would be asked of our family. I only knew enough to be terrified and heartbroken, stuck on a repeating loop: How? How? How? How would I ever be okay again? How would I make a life for her that wasn’t a downward spiral of hopelessness? That day, it felt like someone pressed the diagnosis into my hand, and I knew that I would never put it down.

When I learned about my daughter’s diagnosis, I also discovered how much I had quietly and automatically assumed on the day I found out I was pregnant about what her life would be like. I expected sleepovers. I expected school plays. I expected late nights introducing her to movies that I grew up with. I expected teenage years of eye rolling and slammed doors. I expected broken curfews and negotiations about borrowing the car. I expected a normal amount of heartbreak. I expected to live longer than her. I didn’t expect to hear “mom” a limited number of times. I didn’t expect to have to thicken water in her sippy cup, so it wouldn’t leak into her lungs. I didn’t expect to have to carry her when she was a teenager. I didn’t expect I would change her diaper beyond 3 years old.

What do I wish I had known in those early days after her diagnosis? What did I need that I couldn’t find on Google? I already Googled what the disease meant for her. What I didn’t know – what I wanted to look up – was whether I would be able to handle it all. If I were sitting on the other side of that question, answering my 28-year-old self, staring at a brand-new diagnosis, here’s the most honest answer I could give to this question:

Am I going to be okay?

Answer: No. Then yes. Then no, no, no. Then yes again.

A huge part of grieving Anni’s diagnosis and the life I thought we would have together was acknowledging that this type of thing happens, and happens often. Terminal diagnoses are not rare. Even rare diseases are not rare in the grand scheme of human suffering. A mother losing a child is not actually that unusual. I had to grieve that an uninterrupted cosmic “yes” is not something any of us are promised.

I remember sitting with Anni after she had lost most of her speech. We snuggled and stared into each other’s eyes, without words, for what felt like forever. And in that moment, nothing needed to be different – not her diagnosis, not what was coming. The grief was there, and the love was there, and they were the same thing. We were just two people looking at each other.

I didn’t expect this life to be so full of love. I didn’t expect that caring for her body would be more than changing diapers. I didn’t expect the people I would meet who would work very hard to make her life full of good experiences and meaningful inclusion. I didn’t expect to become part of a community that intentionally turns their heartbreak into positive action. I didn’t expect such an expansion of joy.

My perspective on joy isn’t about putting a positive spin on things or hunting down a silver lining. It’s not “just focus on the positive” messaging because doctor appointments, IEPs, and a DNR can be relentless, exhausting, and sorrowful – they are always there. If we focus only on the positive, it would be like looking at our life through a pinhole. I don’t want a pinhole, I want a wide-eyed, courageous panoramic view of it all.

In the 14 years since her diagnosis, I’ve learned that moments of joy are not few and far between. They’re not moments that are meant to sustain you until the next heartbreak. They’re not moments of reprieve in a long line of disappointments and frustrations. What I slowly learned is that living a full life means viewing all moments with equanimity. The dark and luminous alike are necessary for the full human experience. None of us gets through life unscathed, but the gift of living goes to those who learn to invite in both the prickly and effervescent – to sit with them, to listen, to let them stay for a while.

Remember the word I was looking for to describe receiving a diagnosis? Maybe it’s tricky to find that word because the experience itself is so complex. Maybe it’s a word that can only be written with hindsight.

So I invented one:

Excruliance

excruliance (ek-skroo-lee-əns) noun, excruciating + radiance

The simultaneous experience of devastation and illumination; the overwhelming, clarifying, heartbreaking, and ecstatic feeling that arrives when a moment is too vast for any single emotion to contain. Often felt when love and loss become indistinguishable from one another.

“The diagnosis did not destroy her — it arrived with an excruliance she would spend years learning to name.”

The CPN team and I have just released CPN’s 2025 Impact Report. Certainly we’re proud of it because we’re proud of the work, and it is filled with numbers indicating CPN’s growing reach and engagement with parents and clinicians. Numbers matter in impact reports because they measure progress and scale.

Numbers also matter when you’re measuring the passage of time, ticking off birthdays and anniversaries. Next month – May 9 – marks 25 years since my daughter Cameron died. This is a big number that hurts my head and my heart.

Numbers matter for what they measure, but they don’t hold any deep meaning on their own. The significance comes in the individual stories behind the numbers. Stories contain lots of meaning. And stories are a vehicle for understanding and healing.

So here is a CPN story that is more meaningful to me than all the data in our impact report.

In the fall of 2015, in Burlington Vermont, Sarah Casey and Steve Shaw received the fatal diagnosis of Gaucher Type 2 for their beautiful 8-month-old daughter Emerson Mary Shaw. Emerson’s primary care pediatrician was Dr. Meredith Monahan, who had actually been the chief resident at University of Vermont’s College of Medicine when Sarah’s sister-in-law, Dr. Alicia Casey, had been a younger resident at UVM (a detail that is relevant to this story, so hold on to it).

There was little to be done to meaningfully extend Emerson’s life, but Sarah and Steve could keep Emerson more comfortable through Enzyme Replacement Therapy, for which she would need a port. They traveled to Boston Children’s Hospital – where Dr. Alicia Casey was now an attending pulmonologist – for her niece’s port procedure. While there, Sarah and Steve met with the pediatric palliative care team and expressed how isolated and utterly alone they felt. The palliative care team referred them to Courageous Parents Network, which was only in its second year.

Reluctant at first to engage with CPN, Sarah quickly came to appreciate the multiple parent perspectives shown in CPN’s videos and blog posts, and how these parents gave language to what she and Steve were feeling. Sarah also participated in CPN’s pilot psycho-education series that psychologist Nancy Frumer-Styron was leading.

Back in Vermont, Sarah asked Emerson’s PCP Dr. Meredith Monahan for a referral to UVM’s palliative care pediatrician, Dr. Bob Macauley. Dr. Macauley had taught both Meredith and Alicia during their residencies. In conversations about decisions for medical interventions, Dr. Macauley helped Sarah and Steve understand that they could still be good parents if they focused entirely on Emerson’s quality of life rather than quantity of months.

Emerson died in June 2016 at age 16 months. While Sarah and Steve grieved deeply, they had no regrets.

Up to this point, I (Blyth, founder of CPN) had no idea of Emerson, Sarah or Steve. CPN does not ask parents to identify themselves to use its resources and engage with its programming. But shortly after Emerson’s death, Sarah sent me an email personally thanking CPN for the help we provided and including photos of Emerson. Reading Sarah’s words and seeing these photos of Emerson with her parents, I burst into tears. CPN was only two years old, and this was among the first direct feedback we had received – putting a face, and unmistakable imprint of parental love, on the impact we were having.

Several years later, I interviewed Sarah and Steve and Sarah’s mother Melissa for Courageous Parents Network, so that their story could help other families just as they had been helped. And shortly after that, I interviewed Dr. Macauley so that his wisdom as a palliative care provider would be available on the platform. We also did a book talk with him for his recent memoir, Because I Knew You.

Meanwhile, also unbeknownst to CPN, Dr. Alicia Casey – now director of the Interstitial Lung Disease Program and Pulmonary Fellowship Training Program at Boston Children’s Hospital – was referring families in her practice to Courageous Parents Network. One such family was Frank and Jeanette, whose son Frankie Jr. was one of her patients. I learned about this when dad Frank reached out by phone to thank CPN for helping him see that he was not alone. Naturally, I had to interview them for CPN, to meet Frankie and to share their courageous parenting with other parents. I came away changed – moved by Frankie’s gentle energy, Frank’s humility and Jeanette’s feisty advocacy.

By this time, at her own initiation, Sarah was organizing and directing CPN’s running and fundraising team for the famous Falmouth Road Race, one of the oldest races for non-profits, held each August. Sarah and Steve and Alicia run on Team CPN in memory of Emerson and to raise money in support of other families. And for the past two years, Alicia’s son Jeremiah – Emerson’s cousin – has run too. (Sarah is actively recruiting runners for our team this year.)

Last month, Dr. Alicia Casey celebrated a milestone birthday. As a surprise, her family asked that gifts be made to CPN in honor of Alicia’s work and Emerson’s memory. The combination of this spontaneous gesture and the significant amount of money raised again brought me to tears. Of the amount gifted and her sister-in-law, Sarah said, “this is a testament to how much Alicia is loved and to how much her community values her dedication to her patients and families.”

It is also a testament to Dr. Alicia Casey’s appreciation of the work of Courageous Parents Network to promote palliative care, to help parents see that they are not alone, and to orient and equip them as their child’s advocate. When I spoke with Alicia about how her friends and family gave in her honor, she reminded me that she had trained under Drs. Bob Macauley and Meredith Monahan. We noted what a small world it had become –in the best possible sense. Alicia said, “I trusted that Meredith and Bob and all the people who trained me would take good care of Emerson, Sarah and Steve. And that I could be Emerson’s aunt and Sarah and Steve’s sister-in-law.”

At least for now, this is where the story ends. Dr. Macauley instilled in Drs. Monahan and Casey the primary principles and values of palliative care. Dr. Monahan became a primary care pediatrician and Emerson became one of her patients. Dr. Casey, Emerson’s aunt, became a pediatric pulmonologist and refers patient families like Frank and Jeanette to Courageous Parents Network. And people in their orbit, their network, give to CPN as an act of respect and appreciation; and to keep the goodness flowing.

The numbers in CPN’s impact report capture an expanding reach and dedicated engagement. But, this specific story captures what the numbers cannot. The authentic, soft, heart-forward connections between individuals who share a love for child and family and a dedication to compassionate care, the impact of which ripples outward for decades.

First published on Patient Worthy.

In medicine, baseline is a simple word. It’s a starting point; a reference used for comparison over time. Physicians document it carefully. Researchers rely on it. Clinical trials require it. But when your child is diagnosed with a terminal illness, baseline becomes something far more personal.

When my daughter Éabha was diagnosed with an aggressive brain tumor at age 10, I entered the world of pediatric oncology with a dual lens: I was both a registered nurse and her mother. I understood immediately why clinicians asked about baseline. Establishing a child’s baseline helps guide treatment decisions, detect complications, and evaluate disease progression. It is essential to good medicine. But living it is something entirely different.

One day she was an energetic, creative, endlessly curious child. The next, we were standing in an intensive care unit being told to prepare for the worst. That day marked the end of the “baseline” we had always known. Before cancer, Éabha was vibrant in a way that filled every room. She was thoughtful beyond her years, fiercely loving, and completely devoted to her younger brother. Her laughter came easily. Her wit came quickly. Her energy felt limitless.

Then hydrocephalus, neurosurgery, biopsies, radiation, steroids, chemotherapy, complications, vision loss, weakness, and with each medical intervention came a subtle recalibration. A new version of our daughter emerged.

In pediatrics, baseline matters because children are still developing. Clinicians rely on parents to help distinguish what is normal growth from what signals concern. In pediatric cancer, especially brain tumors, that distinction can become lifesaving. A subtle change in coordination, increased fatigue, a shift in speech pattern, sleeping longer than usual, laughing a little less. These may be whispers of disease progression or treatment complications. But those whispers are rarely obvious. They live in nuance, and parents become fluent in that language.

Baseline isn’t static it is ever evolving. There was a baseline after surgery. A baseline after radiation. A baseline on high-dose steroids. A baseline during tapers. A baseline after shunt revisions. A baseline during stable scans. And every time we thought we understood it, it would shift again.

Monitoring her baseline became a constant, quiet vigilance. As a nurse, I had the clinical knowledge to recognize patterns. As her mother, I knew the cadence of her voice, the spark in her eyes, the rhythm of her walk, the subtle expressions that signaled something wasn’t right. Sometimes it was nothing, sometimes it was everything.

And yet, what makes baseline so difficult in pediatric cancer is not just the vigilance, it is the grief. When decline happens in children, what is often slipping away are pieces of identity. Children with neurologic cancers rarely decline dramatically overnight. The changes come gradually over time and to the outside world, these might appear insignificant. To us, they carried enormous weight. Because baseline is not only about physical ability, but it also encompasses personality, independence, humor, endurance, spirit. Each time Éabha’s baseline shifted, it was an acknowledgment that something had changed, perhaps permanently.

There is a particular exhaustion that comes from loving your child wholeheartedly while simultaneously assessing them clinically. I could understand the pathophysiology of increased intracranial pressure. I could interpret MRI reports. But nothing prepares you for realizing that the baseline you are now protecting would once have felt unimaginable.

Still, baseline was also how we held onto her. It was our early warning system. But it was also our sacred measure of who she was that day. It helped us know what kind of day it could be. Whether she had the strength for visitors. Whether she could sit outside and feel the sun. Whether we needed to advocate for medication adjustments or imaging sooner rather than later.

As her illness progressed, I came to understand that honoring a child’s baseline is honoring their dignity. When asked, “What is her baseline?” they were not simply collecting data. They were acknowledging her as a whole person, not just a diagnosis.

Éabha died at twelve years old.

And when I reflect on her life, I don’t think first about tumor markers or survival curves. I think about the steady courage she showed in a body that betrayed her. I think about the tenderness she extended to others even while suffering. I think about the quiet strength that carried her through days that would have broken most adults.

In the end, baseline was not just a clinical reference point. It was the story of who she was becoming, even as disease tried to define her.

For families navigating pediatric cancer, baseline is more than a word in a chart. It is the lens through which we recognize change. It is the language we use to communicate concern. It is often the first signal that something needs attention. When healthcare teams truly respect a parent’s understanding of baseline, they are doing more than practicing good medicine. They are entering into partnership with the people who know that child best. They are being invited into the most intimate understanding of that child’s life. That partnership can change everything.

As I write this, Sasha is screaming. Not the kind of vocalizations you might hear at a restaurant or department store and realize someone with a complex disability is in the vicinity. This screaming is a pupils-dilated, faced-flushed, blood-curdling kind of shriek. If you were to zoom in further, you’d see her uvula swinging violently in the back of her throat – something right out of a horror movie. My husband employs noise cancelling headphones during these episodes, while Sasha’s four-year-old sister calmly states, “Sasha, it’s too much.”

These episodes have long been a part of parenting Sasha and living alongside her. In her early years, they tended to be nocturnal. As the sun set, an internal switch would flip on and Sasha would start pacing and screaming. We would hear yells anytime she got cold, whether from a window being down while driving along a highway or from missing a blanket when watching television. Nowadays, a screech may occur when she wakes from a brief catnap and feels disoriented. We always hear one when she is uncomfortable from wetness in her incontinence brief. But mostly – and like clockwork – this behavior occurs during menses. Period Power is the term my husband has dubbed it, referencing the surge of energy, mania, appetite and sleepless nights we often see during “that time of the month”. Each cycle has brought challenges for us as caregivers, and also unexpected, miraculous strength to Sasha’s body.

Sanfilippo Syndrome carries with it a myriad of complexities. Sasha was six when her seizures began. With them came a loss of skills, which was shocking and particularly devastating because we did not yet know her diagnosis. Witnessing such a small, young individual go into convulsions brought a helplessness no parent should ever know. As time moved on, the seizures worsened, and our pediatric neurologist shared that seizures beget more seizures. Eventually, Lennox-Gestaut, a typically intractable seizure disorder, was diagnosed. Ativan was prescribed to halt the cluster events; and a new protocol was in place as we cautiously moved forward.

This intervention mostly worked for a few years to come. Every six weeks, Sasha would have a grand mal seizure for about thirty seconds; we’d administer a tiny tablet of Ativan between her back teeth and cheek, and she would fall into a deep sleep for about sixteen hours. A worrisome occurrence to witness, such deep sleep without stirring, but the potential for a seizure wave and crest was mitigated. Sasha would gradually resume her baseline state of awareness and functioning and life went on. That is, until adolescence.

The teenage years arrived, and with them, hormones. Hormones meant more seizures. Six weeks apart became four, then four weeks apart became two, until they eventually hit a worrisome new frequency where Sasha was having seizures every five days. I’ll never forget the day I told her neurologist that I feared a seizure would be the medical event to take her life. If this shrinking timeline continued, the five day interval would become a two, and then every two days would eventually become one. The daily strain of seizures – those were such harrowing years.

In an urgent conversation, he finally mirrored my worries, and he started combining meds in an attempt to reset Sasha’s neurological hardwiring. We had amazing results with a two medication “cocktail” and suddenly watched our wall calendar transform. Once riddled with red circles marking epileptic events, the calendar began to reveal white spaces. The circles grew further apart. More and more white spaces appeared. Calendar pages turned as days turned into weeks and weeks became months. We had struck gold.

While her menses no longer triggers seizure events, it does still have its challenges. Sanitary care was initially quite difficult, as her fully able body was paired with the developmental understanding of a toddler. But as with any medical decision in this rare disease world, deciding whether or not to medically intervene with her hormone cycle was not simple. If I could count the number of times someone said to me, “Life will get so much easier when….,” I would be a very wealthy individual.

For the past fourteen post-puberty years, I have chosen to not (yet) intervene with Sasha’s menses. Behaviors of sleepless nights, screeching vocalizations, frantic pacing and voracious eating are par for the course each and every month. We opt not to travel via airplane, or stay in hotels or rentals with shared walls due to the potential for unexpected screeching episodes. They are incredibly alarming to hear, and I often find myself waiting for police to be called by well intended strangers. While Sasha’s monthly cycles are fairly predictable, they do have a tendency to slightly shift, making travel planning challenging. Sasha experiences urinary retention every month as her cycle approaches, as well withholding the ability to void for upwards 16 hours. Are there medications that can address all of this? Absolutely. Injectable, oral, non surgical and minimally surgical offerings are all at the ready should we wish to pursue them. How effective they will be for a rare disease individual can vary greatly. If they will be a game changer for the better, or conversely, the card that makes the house of cards tumble – we do not know. I live every day, Sasha lives every day, in a house of cards. Her foundation is not built on sand, but her roof can be made wide open to the elements ever so easily.

There’s a host of reasons why I wait – that for all of these years of screeching, I keep pausing. For one, Sasha cannot tell me if she is experiencing a side effect, and more importantly what that side effect is. Women typically follow their mother’s gynecological history; and for me, I had severe mood swings any time I took hormones, and as a monthly migraine sufferer myself, this would also be a concern for Sasha. Second, there is the chance for weight gain. With Sasha being nearly immobile now, it is important for her health (and for our backs!) that she remains at a relatively consistent weight. Neurologically speaking, estrogen tends to increase neuronal excitability, lowering Sasha’s seizure threshold. We are therefore limited in medication options and would need to use progesterone-only compounds so as not to risk the return of seizures. And there is one oddly unique reason holding me back: Sasha’s stamina.

Every month as Sasha’s period approaches, along with the negative behaviors come unexpected positives – increased strength and a return of mobility. During the week leading up to Sasha’s period, she stands on her own volition, with me only holding her hands for balance, and takes self-initiated steps. For one week, every month, I can get Sasha to walk through multiple rooms in our home. In warmer months, my husband follows behind us with her wheelchair as we walk portions of our neighborhood. It is fleeting but amazing. As the period comes, stamina wanes, energy levels dip, and we are back to a two-person assist at her best, and the hoyer lift at her worst. I am so fearful to risk the loss of this sacred week of strength should we alter her hormone cycle. I simply cannot consider it.

I relay my reasoning to Sasha’s providers every six months. I do not disavow the negatives. I treat Sasha with over-the-counter medications for suspected cramping and headaches, monitor her hydration closely and gently apply warm compresses to her abdomen. And in our cupboard sits a month-long prescription of norethindrone, waiting for me to give it a try. But nothing is simple in this rare disease world. What might look like an obvious medical solution from the outside is, for us, a calculation of risk, memory, and hope — and for now, I choose to wait. Some decisions are not about making life easier; they are about preserving what is miraculous.

For the uninitiated, the last day of February is set aside to honor people living with and alongside rare diseases. There are hashtags, purple ribbons, awareness campaigns, carefully chosen stock photos of smiling children in wheelchairs, copy about resilience. The grammar of awareness is familiar by now. It asks us to notice, to learn, to care.

But as I sat down to write about just how rare she is, something else came to mind.

She isn’t rare at all; she is the opposite. She is ubiquitous. She is the single most present thing in my life. We are two folds in the same tablecloth at the banquet of life, tugging and smoothing the same fabric, spilling on the same places, living inside the same stains.

Rarity is a statistical category. It lives in spreadsheets, in prevalence rates, in the language of funding cycles and research pipelines. It belongs to the way medicine sorts and prioritizes bodies, the way institutions decide which lives get legible, which conditions get named, which suffering gets indexed. All of that matters. It shapes who gets help and when. It determines which clinics exist, which specialists you can see without driving three hours and taking a day off work, which questions can be asked because there’s a billing code to hold them.

But none of that is how she exists to me.

To me she is the sound of her breath at 2:13 a.m., the way the house goes still when a machine alarm cuts through a dream. She is the weight on my chest when her body is cold and needs to borrow my warmth for a while. She is the particular way her laugh breaks open a room that is otherwise heavy with unspoken fear. She is the choreography of tubes and medications and the small, fierce rituals of care that bracket our mornings and nights.

This isn’t to say there aren’t rare aspects of her. There are several: a certain genetic mutation; her wondrous talent for making conversation without making it entirely about her trauma; her penchant for bringing people together; her friends and family who have been willing to grow with us and learn how her life rigidly demands flexibility.

Her rarity shows up in exam rooms when clinicians lean in a little closer to the chart, when we become case studies by accident, when we are thanked for our “patience” because there is no protocol for this constellation of needs. It shows up in the way things like insurance systems, school districts, transportation requirements all assume a default body and then quietly fail anyone who doesn’t fit inside that template. Her rarity shows up in the assessment forms with boxes too small to hold the truth, in the phone trees that loop endlessly when you try to explain that your child’s needs don’t align with the options on offer.

It has been tempting these past six years to view her rare diagnosis as an obstacle. As an intrusive “something over there,” while who she really is lives “over here.” To tell ourselves that if we could just cure it, get around it, un-dam the damn thing, then maybe the rivers of our life would finally flow. As if there is a normal life stalled somewhere upstream, waiting for us to clear the blockage so it can arrive on time and according to plan.

Meanwhile many of the things we hoped for have not come to be, and many of the things we dread are now here.

This is the futility of a hope that is only oriented toward the life we were promised rather than the life we are living. This kind of hope can become a way of postponing presence. A way of loving some imagined future version of your child more than the child who is breathing in front of you right now. It can turn care into a holding pattern with mantras such as we’ll really begin once this diagnosis loosens its grip; we’ll really live once the system stops being so disorienting; we’ll really rest once the crisis phase is over.

But the crisis phase is no longer just a phase.

Her diagnosis isn’t something that happens to her. It’s just one way of trying to understand one facet of her existence. It is the language that medicine uses to speak about her body. It is not the language she uses to speak about herself. And when I confuse those two, I start relating to an abstraction instead of a person.

Parsing out her biological rarity, then, is a comparison game; and I have no great interest in doing that. Rare, compared to what? Compared to whose body, whose baseline, whose imagined normal? Comparison is the thief of connection. It tempts me to measure her life against a statistical average and call the difference a catastrophe, rather than to meet the singularity of her being and call it a relationship.

Letting her diagnosis be just one part of the entirety of who she is lets me experience the passing of holidays, milestones, and awareness days with less emotional ambivalence. It lets me hold gratitude and grief in the same hand without asking either of them to justify being here. It lets me show up to Rare Disease Day without needing to perform inspiration or despair, without seeking absolution for experiencing conflicting (or unpopular) thoughts and emotions.

There are days when awareness campaigns feel like a thin layer of paint over a cracked wall. On those days I want to ask what awareness does when it doesn’t come with structural change such as respite care, or accessible housing, or reliable home nursing, or schools that don’t require parents to become full-time case managers just to secure basic accommodations. There are days when “honoring” feels like a euphemism for noticing without altering the conditions that make life so hard.

And there are days when I’m grateful for the simple fact of being seen, however imperfectly. For the provider who says, “I don’t know, but I’m willing to learn.” For the stranger who doesn’t look away when my daughter’s body draws attention in public. For the small mercies of community that appear in waiting rooms and online forums, in late-night messages between parents who recognize each other’s exhaustion.

Her diagnosis is rare, and yet her personhood is the absolute foundation of my facticity. This is the ground of my life now. The systems I move through, the language I use, and the questions I ask – about what counts as care, about whose bodies are considered costly, about how grief and wonder can coexist in the same afternoon – have all been rewritten by the daily labor of loving her.

As we honor Rare Disease Day, I hope a growing community takes time to reflect on the ways our culture struggles to make room for bodies that don’t conform to its narrow expectations of productivity, independence, and ease. My deepest hope is that we change the way we treat care as a private burden rather than a shared practice; because the truth is, people living with medical complexity are not edge cases. Rare diseases exist amongst our neighbors, our classmates, our colleagues, our family, and our friends.

She is rare, and she isn’t.

She is everywhere in my life: in the way I think about time now as something elastic, punctuated by alarms and appointments and the long, slow work of waiting; in the way I understand dignity as something that has nothing to do with efficiency or self-sufficiency and everything to do with being met where you are; in the way I imagine a good society as one that is built for the most vulnerable first, becoming gentler for everyone else.

On Rare Disease Day, I can hold the colored ribbons and the spreadsheet in one hand, and her warm, inconvenient, luminous presence in the other. I can honor the language of rarity without mistaking it for the truth of who she is. And I can say, with as much steadiness as I can manage: she belongs without qualifiers. Rarity is a framework for medicine and advocacy, not a measure of worth. She is life, up close.

On a Repurposed Life

I noticed the bottle one afternoon while cleaning out the refrigerator. Dark glass. A narrow neck. It must have been the kind of bottle you don’t throw away right away because it held something worth remembering. I turned it in my hand and read the label: 2014. That was, by all accounts, a very good year. I remember receiving it now, who we were with, and the unspoken assumption that there would be many more like it.

At the time, I would have told you this was how a life was supposed to work. You laid things down carefully; you let them age, and you trusted that, when the moment came, you would know how to pour. That bottle belonged to a different life, one designed for long evenings and unhurried company, for the clink of glasses meeting midair and the smell of woodsmoke threaded through conversations about the future. All my yesterdays were so full of tomorrows.

And as I stare at the bottle, an unfounded guilt starts to gather.

Not the guilt of having broken something, but of having misused it. As though a life without a medically complex child could be opened fully and savored without interruption. Not necessarily a life without hardship, but hardships born lightly and moved through expediently. Before, I thought that suffering must be done nobly, with a composed voice and steady hands. Could life be measured based on what it actually holds and not just what I wanted it to hold? The bottle was never ruined after all; it just isn’t holding what it once promised to hold. I set it on the counter and kept cleaning.

Standing in front of the open fridge now, the analogy continues to unfold. The bottle is still sound, the glass uncracked. The wine held fast by an undamaged cork. The label remains crisp and legible, displaying, in my mind, so much more than year and vineyard. It is announcing a whole life built of the expectations of that younger version of myself.

Like so many years ago, I again did not throw the bottle away. This time, instead of returning it to the fridge, I rinsed it out, letting the water run until the last traces of the old vintage were gone. I peeled back the label slowly, careful not to rip apart the memories it contained. What remained was simpler than what had been promised.

The bottle, and the life that it represents, is not a failure. It has been repurposed, it is a vase now.

The admission lands with less drama than I may have expected. A vase is a modest thing. It does not hold intoxicating promises. It is meant to stay put, to be stable, to hold without calling attention to its own design. Before, I imagined myself a full bottle, offering something rich and expansive. I have become more like the vase, holding something much simpler yet necessary to keep something precious alive.

The world still demands the mindset of that former self though. It shows up in many areas of my life. My career that rewards the privilege of consistent momentum. The friendships that aren’t as easy to maintain now that I’m always requesting accommodations. The invitations to travel, the asks to show up, to say yes, all while having to calculate what it will cost at home. Conversations still open with What’s next? as though the future were a neutral resource. Even praise for me as a caregiver is spoken in the old grammar, with phrases that call me impressive, productive, or busy.

I’ve come to realize that the ache of who I once imagined I would become doesn’t fade just because I’ve given my role a new name. The world is still calling, regardless of my positive reframing. The sense that a life once forecast with confidence has come in under expectation reverberates even in the smallest moments, like when a friend texts to ask if I can meet for coffee, as though they are reaching for the older version of me. I have spent so much time living as though the person I might have been is here now, waiting for me to explain myself.

It has been an ongoing challenge for me to shift my understanding of what I want my life to look like now that my days are dictated by the needs of a medically complex child. And though I am no longer full of the vivacious libations I once was, neither am I empty. I now hold what is necessary for those that cannot survive without me. I am a vessel for a life that no longer photographs well, but that quietly persists. I have found mercy in letting my life as a caregiver be what it is without demanding it justify the change.

To live as the vase is to stop apologizing for not becoming the person I might have been. It is to acknowledge the uncomfortable certainty that I am the parent I have needed to become, and to understand that this is not a moral failure. The bottle was altered by necessity, not neglect. Life was altered by love.

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