Theme: Guilt and Regret

Feelings of guilt and regret, including the anticipation of those emotions, are natural for all parents. However, they are particularly prevalent for those caring for children living with medical complexity. The stakes are high. Parents feel pressure to get it right – from making potentially life-saving medical decisions to ensuring that their child’s quality of life is as good as it can be to juggling the needs of the entire family. In this webinar, Dr. Chrissy Salley, a pediatric psychologist, will describe common sources of guilt and regret. Borrowing from Cognitive Behavioral Therapy and the science of caregiving, she will teach attendees strategies they can employ to manage feelings of guilt and regret throughout the caregiving journey.

This event will take place on Thursday, March 5th at 8:00 pm ET (7:00 pm CT, 6:00 pm MT, 5:00 pm PT).

Theme: Guilt and Regret

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

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

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

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

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

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

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

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

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

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

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

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

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

Resilience as reliance, not resistance.

These ordinary instants are the ones that change your life.

Stephen Hager goes by his second middle name (he has three), Bud, because it’s easier to remember and baristas never misspell it. Along with his wife he is a caregiver for their 8-year-old daughter, Emma, who has pachygyria, a rare neurological disorder. He believes in taking an active approach to advocating for his child and others like her. To this end, he sits on various advisory councils at Children Hospital of Orange County (CHOC), volunteers on consulting and directing boards for various non-profit centers and lends his writing skills where he can. Experiencing a lack of support for parents of medically complex children, Bud founded a support group through CHOC focusing on parent-to-parent interaction. He is also a professor of psychology and has a small private psychotherapy practice.

Theme: Guilt and Regret

Dear Mother or Father Who Isn’t Brokering Your Own Treatment for Your Child,

I wanted to write this letter because I believe you might be feeling the same sort of guilt and despair that I felt when I saw other parents doing their own ground-breaking research while raising millions of dollars, creating teams of scientists and physicians and starting companies that would develop a miracle cure or treatment for their children. I wanted to tell you my personal story about how God spoke to my heart and changed my thinking in hopes that you, too, might see your own situation in a new light.

When my son was diagnosed with a rare and progressive multi-systemic genetic disease at age three, I was told that the treatment for his disease already existed. And though I was devastated to the very core, I found solace in the fact that he would soon be able to access a cure. But it turned out I was wrong. The treatment existed, but only in a lab.

In my naiveté, I was patiently hopeful until about year three or four when I realized that nothing was happening. Nothing. No progress, no movement. Clinical trials were canceled before they even started, and no one uttered a word about when they might restart. I realized that it would be years before any treatment would be available.

By then my son had already begun manifesting new symptoms of his disease, and every couple of years, something new would appear. Some were external changes that I could see, and some were internal that I couldn’t. My anxiety about his life began to ramp up, and I started some rather frantic Internet and database searches trying to learn all that I could to make sense of what was happening.

About five years after his diagnosis, I was poking around on the Internet during one of my obsessive searches when I saw a headline about my son’s ultra-rare disease in Nature magazine, one of the world’s top scientific journals. The headline announced a novel and exciting discovery about a promising drug treatment for my son’s disease in the form of a compound that could induce something called heat shock proteins, or HSPS, that would help his body overcome the underlying cause of disease.

For a short while, I was jubilant. I even communicated with the lead author of the Nature article. But months afterwards, the promising new drug discovery was diverted towards treating a completely different disease. We had been abandoned without a word or a backward glance, most likely because of our ultra-small population and the infamous therapy that was still struggling to gain a foothold in the process of funding clinical trials.

With my new hope dashed and almost no social and financial capital to speak of, I grew even more desperate, believing the only option was to figure out something on my own. These HSP inducers, as they were called, already existed in other herbal and pharmaceutical drugs. And even before the article came out, I had already heard about something called chaperone therapy, which works along the same lines as HSPs to treat the type of disease my son has.

Tossing all concerns about my ego aside, I reached out to researchers and physicians and asked questions about chaperone therapies and HSP inducers, some that revealed my ignorance and others that reflected my insight and understanding.  In response, some ignored me, some sympathized, some scoffed, some condescended, some offered suggestions, and one physician was willing to move forward with a possible off-the-label option.

Looking at my son, who appeared to be becoming increasingly frail compared to other children but who was still stable and with a good quality of life, I weighed it all out. I weighed out what might be dangerous for his compromised liver and blood and what might be safe enough to try and help him. In the end, I decided I had to let all the possibilities go, except for a few ordinary vitamin and mineral supplements. I could not risk any harm to my own son.

At this point, I hit another low. Why couldn’t I manage to do what other parents were accomplishing? Didn’t I love my son well enough to carry out the miracle-making process on my own? Why was I not smart enough to find answers that were laid out in plain view for biochemists? Had I made all the wrong decisions about relationships and finances?  Was I not trying hard enough?

I began to ask God, why? Why can’t I fix this?  It all seemed unfair, and I felt like a failure. The torment went on for some time, flaring whenever my son experienced problems related to his disease.

With all the noise, my busy mind was never truly quiet.

Well, almost never.

Because one ordinary day, completely out of the blue, God found a small space of quiet in my mind, and in that moment, God spoke to me quite clearly.

Now some claim to hear God’s voice audibly, but for many others, including me, God’s voice comes in a revelation of knowledge in the form of an impression. The impression is so clear and definitive that there is no room for doubt about its origins and accuracy.

The answer that came in, answered my question, why can’t I make a treatment happen for my son? Translated into my own words, here is what God spoke to me:

Kara, you weren’t asked to do that. I didn’t lay that desire on your heart. I didn’t orchestrate the relationships and provide the resources you would need to accomplish that. I have something else in mind for you.

And that was it. But it set me free and allowed me to begin the process of reframing my life, my gifts, and my purpose.

After the epiphany, I started thinking about what life would be like if we were all destined to be scientists or physicians. I thought about the songs that uplifted me when I was down and the people who sang them. What would life be like without the work of artists and musicians? Without teachers and caregivers? Of course, we need people who are gifted in the sciences and who have the business acumen needed to help bring drugs and other therapies to market. But life is more than just existing; there also needs to be a quality of life that makes it beautiful and worth living, a life in which we can live out our unique purpose alongside other human beings, whose purposes are no greater or worthier than those of any others.

Ultimately, I found freedom from my guilt and despair and walked together with my son in endurance for the remainder of the time it took to access treatment, in total, eighteen years. Though I continued and still continue to experience the ebb and flow of grief over my son’s disease, I would never again be crushed by the weight of what I once saw as my own failure to be the parent who brokered her own child’s cure.

So, my message to you, if you are feeling like I did, to open the door to the possibilities that in the right timing, you too might see clearly a path set out before you, one that may directly or indirectly involve you in the process of brokering a cure, and one that may simply be to take care of your child. You will find your way. Neither your life nor your child’s life is without purpose, and you are both created perfectly to achieve it.

Theme: Guilt and Regret

Caregivers of children living with serious medical conditions face a myriad of decisions on behalf of their child, ranging from medical interventions – such as feeding tubes, tracheostomy, clinical trials – to out-of-home residential placement. With these decisions comes a tremendous sense of responsibility and a sometimes overwhelming fear of regret.

This event features Dr. Aliza Olive (Cleveland Clinic) who discusses the emotional landscape of complex decision-making and highlights supports that can be put in place to help caregivers mitigate fears and lessen the likelihood of decision regret.

Theme: Guilt and Regret

Theme: Guilt and Regret

If I’d given it any thought ahead of time – before the anticipatory grief and the ambiguous grief and the conventional grief wrapped around me like a weighted blanket – I’d have imagined the sadness. Grief as I understood it then comes when you lose someone you love. Sadness would be the obvious response. And because I learned about the supposed “five stages of grief” in my Intro to Psych course, I wouldn’t have been surprised to experience a bit of anger or denial, too.

But the layers of guilt took me by surprise when they showed up and settled in for an extended stay.

In general, guilt is something I’m fairly intimate with. I feel guilty when I burn the chicken or don’t help my child study adequately for his test or forget my friend’s birthday. But the kind of guilt I’ve met through all aspects of grief has little in common with these fleeting feelings of remorse.

When my daughter Dalia had a tracheostomy and lost her ability to speak, she came up with new ways to communicate. She’d point and nod and mouth the words she once enunciated in her sweet singsong voice. And sometimes, she’d slap the bed.

At night, after I emptied the syringes of medicine into her g-tube and set up the food pump and read from her favorite book and sang the good-night song to her, I settled into the armchair to wait for the overnight nurse. But Dalia didn’t always want to go right to sleep. She hit the bed to summon me, wanting more blankets or fewer, wanting me to rearrange her pillows or rub her forehead. I got up quickly the first and second and even third time. But by the fifth or sixth I was annoyed. I was tired. I wanted to read my book. I knew she was teasing me with her continued requests.

How in the world could I have gotten frustrated? I felt guilty the next day and I feel guilty today, years later. Dalia couldn’t fix her own blankets or pillow. I’d give my limbs to be able to do it for her now.

There were also times when I felt sorry for myself. Why did my daughter have a rare disease? Why couldn’t I go out to dinner with my husband without hiring both a nurse and a babysitter to take care of my kids? Why did I have to squeeze appointments with my daughter’s physical therapist and pulmonologist and respiratory therapist into my busy workday?

Then I saw Dalia’s eyes light up when I went to pick her up early from school for the appointments. I watched her work so hard to move her legs during therapy or kick her legs with glee when she heard “Shake It Off.” She didn’t seem to feel sorry for herself at all. I felt guilty for being upset about the relatively small challenges I was facing while she was meeting her huge ones with grace and smiles.

On the flip side, I found a way to feel guilty when I was happy, too. When we raced Dalia up and down the ramps at the skatepark in her wheelchair or had water fights with the saline bullets or danced together, even when all Dalia could move was her shoulders, joy pushed sadness to the fringes of the room. But then guilt peeked around the corner. How could I be happy with the way things were? Did that mean we weren’t trying hard enough to change the trajectory?

Since Dalia passed away, there have been so many times guilt has reared its head. When my husband and I took our other two kids on a hiking trip to Arizona I felt guilty having so much fun doing something that wouldn’t have been possible when Dalia was alive. When I enjoy the freedom of being able to go out to dinner at a moment’s notice or take a trip to New York without weeks of planning, I feel guilty.

Years after my father died, I found a sealed envelope with my name on it in one of his files. It was a letter he’d meant for me to read after he’d passed away. In it he wrote, “Never feel even a twinge of guilt when you laugh, when you forget, when you live as fully as you can.”

Now, when I feel guilty, I think about what my father said. I believe Dalia would agree with him.

So where does that leave us as we brave the season of gratitude? Can we be grateful when we’re grieving? And if we feel grateful, should we then feel guilty?

There’s a saying inscribed on throw pillows and journals and half of the other merchandise in Home Goods: “Choose Happy.” The saying gives me pause. I love the idea in theory, but it seems wildly simplistic, a chastisement for people who have every reason to be sad.

But if we can choose what we do feel, maybe we can choose what we don’t feel, too. I wonder if it’s possible to choose not to feel guilty. That’s a throw pillow I could get behind.

There’s nothing to be learned from guilt at this point. I know I lived every minute as fully as I could with my daughter. I know that moments of frustration or sadness were par for the parenting course. Most importantly, I know she’d want her memory to bring me joy, not regret.

Besides, I am in fact eternally grateful. I’m grateful that I got to be Dalia’s mother, that she showed me what it means to be brave and empathetic and to radiate joy.

There will always be room for grief. I welcome it as a reminder of my love. But I’m going to do whatever I can to close the door on guilt. Grief and gratitude can stay as long as they want, but guilt isn’t welcome here anymore.

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Jessica Fein writes about the mingling of joy and sorrow, mothering a child with a rare disease, and staying rooted when life tries to blow you down.  Listen to her podcast, “I Don’t Know How You Do It,”  including her discussion with Kelly Cervantes.

Her memoir, Breath Taking: Rare Girl in a World of Love and Loss, is coming in May, and is available for preorder now at Amazon.com and Bookshop.org.  Visit her website or connect with her on IG for real talk about love and loss @feinjessica

Theme: Guilt and Regret

Physician Dr. Kate Nelson, who specializes in parental decision-making, offers concrete suggestions to parents who are worried they may make a wrong decision in the face of uncertainty: talk about what you do know now in this moment; are there situations that would NOT be acceptable to you? What are you going to do with the information you will get with a test?

Theme: Guilt and Regret

The mom of a boy who died of Krabbe Disease describes the small team of people she invited to his service: his pharmacist, his PT/OT people. “The people who saw us in our home setting.” She grieves the broader community of people he never got to meet but fights the regret and gives herself grace for keeping his world small.

Theme: Guilt and Regret

“Did you ever not just feel like you are more than one person? I was like Jackson’s mom is at home. Jackson’s advocate is here [in the hospital]. Jackson’s mom is a hot mess, and she has a foul mouth and a quick temper. And Jackson’s advocate [with the doctors] is professional, direct, and driven. And this is the person that serves him best.”

Theme: Guilt and Regret

I only had one Mother’s Day with all three of my children alive. I wish I could say something poetic and beautiful about it. 

But I don’t remember anything from that day. 

I had to look back through my photos to figure out what happened. My husband went back through his, too, because he also could not remember. I found pictures of my mom and I shopping for an outdoor rug for our back deck. He had photos of our medically-fragile baby, Viggo. For weekday care of Viggo, my mom and I worked in shifts. As a result, we hadn’t spent much time together outside of handing off caregiving duties since he came home from the NICU in February. Our family could not travel because Viggo was too fragile, so we decided to beautify the back porch. I can only guess that is why we went shopping at the hardware store together for Mother’s Day last year.

I should have known it was my only Mother’s Day with Viggo. In fact, I did sense this, but I couldn’t hold that thought in my consciousness because it was too heavy. And now here I am, wishing I had taken a photo of myself with my three children on that day. And now here I am, telling myself that it was JUST A DAY, it doesn’t mean anything, and we have plenty of photos from other days. 

Judging myself for failing at Mother’s Day. 

Judging myself for feeling bad about it.

This is the reality of grief after medical trauma. Trauma affects brain function in tangible ways, and for me, it means that there is so much of Viggo’s life that I don’t remember. Just this spring, I started to organize a 40th birthday party for a close friend, only to learn that she turned 40 last year, and that I had attended the party. Are the memories there, just locked away somewhere? Or were they never written? 

This difficulty remembering complicates my grief. I don’t have any more chances. I don’t have any more Mother’s Days with Viggo. When I did have my chance, I was out of my mind with stress, trauma, love, worry, anticipatory grief, and the hypervigilance of caregiving for my baby while also trying to meet the needs of my older two children. I wish I could have been more present for all those moments. I wish I could remember.

The other day, I had a conversation with a stay-at-home mom of three. She described her high levels of anxiety in the early days of caring for her small children full-time. Like me, she also struggled to remember the “beautiful” moments, as multitasking without a break, anxiety, and isolation meant she was barely keeping it together for years.

While our experiences are so different–-some would say incomparable—I was comforted to hear the common threads of mom guilt and mom regret in her story. No matter how tragic, or perfect, our mothering looks from the outside, we can still be swallowed up by these two aspects of self-judgment. Mom guilt and mom regret are especially toxic for grieving mothers, because we have no more chances to redeem ourselves in our own eyes.

We would never shame our sister-mothers for being human and struggling in extremely challenging circumstances. We would never shame anyone for experiencing symptoms of PTSD. Yet we are not always so kind to ourselves. On Mother’s Day this year, my spiritual work was to recognize my guilt and regret as separate from my grief. While I will never stop grieving Viggo, I can stop feeling bad about being imperfect. I can give myself the compassion that I so freely give to others. I can ask for reassurance when I can’t dig myself out of my own dark hole. I can tell other mothers that they are doing an amazing job. I can remember that motherhood, like life, is messy and complicated.

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Ashley Waddell Tingstad is an estate planner in Ann Arbor, Michigan. She is the wife of a veteran and the mother of three. Her son, Viggo Rick, was born with a rare genetic condition and died at six months of age. Mothering and grieving Viggo has changed Ashley in the most profound ways. She is dedicated to helping families mitigate trauma and suffering in situations where there will be no “happy ending.” She writes about her journey here, at momherenow.com, and on Facebook @momherenow. 

Theme: Guilt and Regret

A bereaved mother learns self-compassion in reflecting on decisions to keep her daughter alive for five months in the NICU, hoping and hoping she could eventually come home. “I get peace from realizing I would do the same thing all over again. … You don’t know what you don’t know. … There’s no blueprint on what is the right or wrong decision.”

Theme: Guilt and Regret

There’s no easy entry point for the topic that’s been rattling around my mind for weeks now – so bear with me as I dive right in. I want to write about rage. But I’m scared to write about rage, because in doing so, I may cloud in my reader’s mind two truths that are center to my soul: 1) My son Colson was a miracle in my life, and I love him eternally. 2) Being Colson’s mom was the most fulfilling thing I’ve ever done, and I miss mothering him every day. Please bear this in mind as I expound on a third truth: 3) I experienced primal rage as Colson’s mom that felt otherworldly, and it breaks my heart that he was proximate to that rage. But I’m beginning to rethink that rage as something more than a failing on my part. I’m starting to see it now as a source of strength – of primordial rallying in the face of encroaching death.

I can count on one hand my moments of rage in Colson’s four short years living with mitochondrial disease. The time that I punched my cot over and over while he slept in the crib beside me, because I was so wired from parenting a medically fragile newborn that I ironically couldn’t sleep – though I was desperate for it. The time, several months later, when I had to leave him crying in that crib to go hurl a toy at the hallway wall because his anti-seizure medication was making him inconsolable. I once kicked a dresser with Colson bare in my arms, while shouting expletives at the God of my youth for making it seemingly impossible for my child to keep food down. (I believe my words to the heavens were, “you can f*** right off.”) And then there was a time when Colson was a toddler that I, with one hand, patted his back to clear his airway after he choked on his own saliva in the middle of the night, while throwing a pack of wipes at the headboard with my other hand and howling with wrath.

The source of shame for me, in all of these instances, is the physicality of this rage. This throwing of things; this shouting; this volcanic explosiveness that runs so contrary to my relentless pursuit of calm, quiet, gentle and cozy for Colson. I’ve also been hounded by Colson’s proximity in these instances – it feels important to say that my ferocity was never, ever, remotely directed at Colson – in word or action. But what kind of mother lets loose her fury with her child close by? A tired mother, yes. A scared mother, absolutely. A lonely mother, likely. But until recently, I’d forgotten about the best type of mother: a protective mother.

The best way to protect any child, and especially a medically complex child, is to have protective measures in place. Make sure to have all meds filled at all times. Stay on top of scheduling doctor’s appointments and therapy visits. Keep your personal commitments light to maintain energy for caregiving. The best defense is a good offense, etc. This hypervigilance is critical, and often the thing that leads to caregiver burnout.

Rage is different from burnout. Rage is a defensive stance in the face of an immediate threat. Mothers of all kinds will instinctively rage like hell to defend their children. Mama bears, lionesses, elephants. Cats, dogs, ducks. Predators are the primary threat in the animal kingdom. A rare disease is its own kind of perverse predator. It shadows our children relentlessly, yet the only shape it takes is our children’s suffering. We, as caregivers, can turn ourselves inside out to protect our children, but the defenses don’t always hold.

It’s helpful to understand what is happening in our own bodies when the threat of our children’s disease overwhelms us. This framing is from The Body Keeps the Score: Brain, Mind and Body in the Healing of Trauma by Bessel Van Der Kolk, M.D.

“The autonomic nervous system regulates three fundamental physiological states. The level of safety determines which one of these is activated at any particular time. Whenever we feel threatened, we instinctively turn to the first level, social engagement. We call out for help, support and comfort from the people around us. But if no one comes to our aid, or we’re in immediate danger, the organism resorts to a more primitive way to survive: fight or flight. We fight off our attacker, or we run to a safe place. However, if this fails – we can’t get away, we’re held down or trapped – the organism tries to preserve itself by shutting down and expending as little energy as possible. We are then in a state of freeze or collapse,”  (p. 82).

Upon reading these words recently, I realized that my moments of rage as Colson’s mom were actually my body’s attempt to activate fight or flight mode. In each of the instances, I was alone with Colson, without another person nearby to help me work through the immediate challenge. I was battling my own exhaustion with the need to keep functioning at an intense frequency to keep him safe. Shutting down is not an option when your caregiving is the only thing keeping your child’s decline or death at bay. Van Der Kolk indeed notes that, “…for many people, panic and rage are preferable to the opposite: shutting down and becoming dead to the world. Activating fight/flight at least makes them feel energized,” (p. 85).

I so desperately wish that I had understood my rare rage as energizing and protective when Colson was alive, as I may have forgiven myself for it sooner. I’m also oddly grateful, here in my mourning, for my emerging understanding of my own body’s response to the intensity of caring for him. 

Two months before Colson died, I wrote in my journal: “I feel increasingly frustrated, tired, isolated, unmotivated, more like a nurse than a mom and, in my worst moments, resentful of that role. Not resentful to Coley (never, ever, ever,) – just – tired of the whole situation.” This feeling was so present for me when we decided to cease medical intervention for Colson and let him pass in the midst of an acute medical crisis. I realize now that I myself was moving towards a state of freeze or collapse in his final months. I have no idea if or how my other built-in responses for social engagement or fight or flight might have come into play to mitigate this had Colson lived. But as I’ve learned, rare-disease parents tap into some of the most visceral, instinctive, and protective mechanisms of any creature on this earth. In our world, even rage can look a lot like love.

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Liz Morris loves exploring complex questions. Her professional experiences in project management, librarianship, and community development prepared her well for her favorite role as mom to Colson. Colson, impacted by mitochondrial disease since birth, inspired Liz to face the complicated aspects of his life through writing and advocacy. Liz serves as a family advisor at Seattle Children’s Hospital, and is a volunteer ambassador for the United Mitochondrial Disease Foundation. She is committed to helping families find the information they need to help them live well in the face of life-limiting illness. You can find Liz on Instagram @mrsliz.morris