"Stay Hydrated" by Bud Hager

Spring Season Letters From A Caregiver

Hello! If you’re new to Carer Mentor, welcome! Thank you for being here!

I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why? I created Carer Mentor to offer heartfelt empathy for Caregivers. It’s a hub of practical tools, resources, and insights. A community support network for all of us human-ing hard. ❤️ Start exploring here.

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Letters from a Caregiver.

“Letters from a Caregiver” is a weekly article where a caregiver offers wisdom, compassion, and hope to their younger self. No one knows us as well as we know ourselves, and even then, we may second-guess ourselves. The choices, challenges and tragedies we’ve faced have forged us in more ways than anyone can understand; in ways we’re still trying to decipher!

There are two previous seasons of Twenty-One Letters.

This Spring Season so far

1. Misunderstood, and everyone has an opinion,” By Victoria

2. “What It Takes To Embrace the Life He Has “ By Chris B. Writes

3. “The Long Road Home for a Different Kind of Future” By Haley Haddow

4. “Grace, belatedly..…Becoming the daughter she needed” By Sarah Bain

5. “Caring to Love.” A Letter to My Younger Self By Kirbie Earley

6. “My caregiving journey is a family healing journey” By Viva Mogi, MPA

7. “The Love Test” by Echoes of Memory by Sally Cave

8. “Nothing and Everything Will Prepare You for This Moment” By Brittany Carroll

9. “But You Will: A Letter to My Younger (Suddenly) Caregiver Self.” By Tina Matras.

10. “Leave It in That Room” By Khadra Awomer

Today’s ‘Letter from a Caregiver’ is by Bud Hager

While our caregiving situations are very different, I always feel a deep resonance with Bud’s articles. Perhaps it’s because his words articulate certain feelings, thoughts or situations I’ve struggled to voice myself. I don’t know if you’ll feel the same way; every caregiving situation is different. I’m just very grateful that you can discover more of his words through his letter today.

I found his writing in 2025 at “Our Little Kartoffel”.** He also writes at The Courageous Parents Network, which is, in his words, “a fantastic resource for exploring the world of raising children with disabilities and rare genetic disorders. Be sure to visit their site for more insights!”

** “I’m a dad to an extraordinary daughter—a little human with a slew of medical diagnoses layered over a child full of quiet wonder. Her primary diagnosis is pachygyria, but her life defies the limits of any medical binder. We call her Kartoffel. Our little potato.” - Bud Hager

Author’s Bio: Bud Hager goes by his second middle name (he has three) because it’s easier to remember and baristas never misspell it. Along with his wife he is a caregiver for their daughter, Emma, who has 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 Rady’s Children’s Health (RCH), volunteers on consulting and directing boards for various non-profit centers, and lends his writing skills where he can. He is also a professor of psychology and has a small private psychotherapy practice that is mostly filled by pro bono work for parents of newly diagnosed children.

Stay Hydrated

Dear Me,

You are sitting in a hospital room pretending to understand what the nurse is saying.

You are nodding at phrases like “bolus feed” and “extension set” and “flush before and after medications” while staring at a laminated diagram of a child’s torso with a g-tube in it. The nurse is patient. You hate that. Patience, in moments like this, feels humiliating. You want someone to acknowledge that this is absurd. That your daughter should not require a demonstration and laminated instructions to be fed.

You keep thinking the same stupid thought: We are really doing this. And you mean this literally. You aren’t being dramatic or waxing existential. You are really about to go home with syringes and formula and a backpack full of medical equipment because your child cannot reliably eat by mouth anymore.

You’ve already been doing this parent caregiving bit for years now. You even got yourself a decent little following on social media where people repost your content saying ‘THIS!’, one of your videos even got 3 million views! It’s amazing how all of that will inflate your sense of certainty. You thought you understood caregiving before this.

You did not.

I do not mean that cruelly. You had already learned things most parents never have to learn. You could discuss seizure rescue meds while making coffee. You could read pulse oximeters at three in the morning with one eye open. You had mastered the strange choreography of specialists, insurance appeals, emergency departments, and developmental therapies. You and your wife had become competent in the way people become competent when the alternative is catastrophe. And you took pride in this. Not the suffering. The adaptation.

You believed that if you paid close enough attention, loved hard enough, researched thoroughly enough, stayed humble enough, then maybe you could outwork tragedy. Or at least negotiate with it. The g-tube will feel like the moment that illusion finally tears. Not because it is the worst thing that will happen. Trust me it isn’t and won’t be. I won’t insult you by pretending this is the hard part. There are future nights that will rearrange your understanding of fear so completely that this version of you would not even recognize them as survivable. But this is the moment you finally understand that your daughter’s life is not taking a temporary detour before rejoining the road you imagined. This is the road.

And you are furious about it. Furious for her, mostly. Though not entirely. You are also angry because you can feel your old life collapsing and you resent being the sort of person who notices that while his child is suffering. You are ashamed that part of your grief is selfish. Ashamed that another part is aesthetic. You mourn the ordinary future with the embarrassing sincerity of a man who once thought ballet schedules and spilled juice boxes would be genuine inconveniences.

You are also carrying another shame you haven’t said aloud yet.

You think you should have known sooner.

You replay meals in your head like game film. The coughing. The fatigue. The long stretches at the table. The way feeding became work for everyone involved. You are convinced there was some hidden test of parental attentiveness and you failed it.

There is a scene I remember clearly.

You are standing at the sink rinsing out a syringe. It is late. Hospital late. The flickering midnight where time no longer behaves correctly. You look down at the syringe and think: I cannot believe this is our life.

Then, because you are who you are, you immediately hate yourself for thinking it.

Because she is still here. Because she is laughing sometimes. Because she still reaches for your beard with her tiny hand. Because gratitude and grief have become roommates and you think admitting one betrays the other.

I am writing to you now because eventually you will meet wonderful people who will ask you to write a letter to my younger self. Apparently this is the sort of thing people do when enough time has passed. We imagine ourselves as older and wiser, standing safely on the opposite shore, calling instructions back across the water.

I certainly don’t feel wiser, definitely feel older so I got half the assignment down. Anyway, here is what I would say to you:

“You need to stop trying to force your old vision of parenthood onto your life.

You think your suffering comes from the medical complexity itself, but much of it comes from the constant comparison between the life you expected and the life you have. You suffer more in imagination than in real life and keep measuring your days against that imaginary standard and then wondering why they fail to match.

They never will.

Your daughter is not a corrupted version of the child you imagined. She is not a deviation from the “real” story. There is no hidden, better life running parallel to this one. There is only this particular child with this particular body and this particular laugh and this particular way of leaning her head against your chest when she is tired. Once you stop demanding that your life become something else, you will finally be able to see the life that is actually here.”

That sounds wise, doesn’t it? Clean. Finished. The sort of thing people underline in books.

As I write it I distrust it immediately.

Not because it is false, most if not all of it is true. Rather I distrust it because it suggests wisdom works like information. As though I could simply hand you a sentence sturdy enough to carry you through the next seven years.

I cannot.

You are going to learn almost everything the only way anyone ever truly learns anything: through repetition and embodiment and exhaustion and love.

No one could have explained tube feeding to you in a way that mattered before you stood at the kitchen counter at two in the morning trying to remember whether medications can be mixed into formula. No one could have adequately described the peculiar intimacy of keeping another person alive through routine. No one could have prepared you for how quickly medical equipment becomes ordinary. Or how dangerous that ordinariness sometimes feels.

And if I told you now that there will still be beauty ahead, you would misunderstand me and would imagine redemption.

I do not mean redemption.

I mean beauty in the sense of your daughter sitting in the morning light while formula slowly moves through tubing and the entire room becomes briefly, almost unbearably quiet. I mean learning not to rush these feeds just because you are tired. Learning that efficiency is not always the highest good. Learning that care can become distorted when you try to optimize every moment.

I mean eventually sitting down sometimes instead of treating your own existence like an emergency response. I mean realizing that rituals matter precisely because so much else cannot be controlled.

You will start making coffee less fancifully but drink it more meditatively. You will actually cook more even though you will have less time and more terrible days. You will notice weather again. You will do things like these because you will learn that despair is greedy and you discover you must intentionally leave something outside its reach.

You will also become deeply suspicious of the stories people tell about families like yours. The inspirational, warrior narratives with their neat little moral diagrams where suffering produces wisdom in mathematically satisfying proportions. You will understand why people reach for those stories. Catastrophe frightens us. Randomness frightens us even more. Inspiration, remember though, is in those doing the observing, not those being observed.

But your daughter was never placed on this earth to teach other people gratitude. And you’ll forget this but your life is not admirable because it is difficult, you do not have a monopoly on suffering, and just being the parent of a medically complex, fragile, disabled, dying child does not make you a good person. You have to do the good part.

Most days are not cinematic anyway. They are repetitive and absurd and more than occasionally boring in many ways. You will spend shocking amounts of your existence discussing stool consistency. This, too, is part of love.

I realize as I write this part that I have slowly stopped giving advice. If I am honest, you would not take it anyway.

If I told you that you survive this you would hear survival as victory, it’s not. Some seasons are graceful. Some are ugly. Some you endure badly. There is no final montage where the music swells and you become the person all this was supposedly shaping you to be. You remain unfinished, thank God. I’m not writing to help you prepare or reassure you. You cannot prepare and reassurance has a terribly short shelf life. I am writing because I think the closest thing we have to mentoring our past selves is choosing how we inhabit the present.

The man you needed back then was not someone with answers. You already had experts and pamphlets and discharge instructions and a billion parents on the internet with their version of advice. What you needed was someone who could sit beside you without turning your life into a lesson.

I cannot travel backward and become that person for you but I can try to become him now.

That’s all I have for you.

Best,
Bud

PS - stay hydrated, you’re going to cry, a lot

The Closing Rapid Fire Questions from Victoria:

1. In a couple of sentences, describe one thing you do to move through fear or uncertainty during caregiving.

I’m not sure I do. Fear and uncertainty are as much, perhaps more, a part of caregiving as confidence and clarity. Allowing fear and uncertainty to inform and instruct instead of trying to extirpate them has helped me love and care deeper.

2. Thinking of someone you admire/respect (friend/colleague/well-known person), name three of their standout qualities/characteristics.

Of course that someone is Emma: her wondrous talent for making conversation without making it entirely about her trauma, her complete inability to live de mauvaise foi, and her amazing ability for bringing people together.

3. What’s one quote/movie/book that’s inspired you?

“And in the end, the love you take, is equal to the love you make.”

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Prompt for discussion:

Why does society feel the need to turn caregiving, medical complexity, or disability into a “lesson” for others and how does this narrative actually harm parents and caregivers by placing an unfair burden on them to be “good” or “heroic” rather than just human?

Please like ‘❤️’ the article to guide others here.