I have to say I'm really humbled to suddenly see this on the front page. Today was a particularly hard day; I won't go into details but taking care of a permanently disabled invalid involves a lot of ups and downs and some fairly messy manual labor to keep them comfortable and in good shape.
I love you all. Hug your kids if you have em.
EDIT: The above blog post here was one of three things I wrote in the immediate aftermath of the tragedy to try to process my feelings and exorcise my dark thoughts. I have two more which you can find below:
The Ballad of St. Halvor (a poem): https://www.fortressofdoors.com/st-halvor/
Four Magic Words (short story, somewhat dark): https://www.fortressofdoors.com/four-magic-words/
Hey Lars. Thanks for sharing your story, so many of us are in a similar situations but dealing with it in isolation. After more than a decade of being a carer I can offer you the following:
Take care of yourself and your partner. Get some outside help if you can so you can take some breaks.
Find things that bring you joy, treat yourself.
Try and help your daughters process things and come away better people for the experience.
Treat your son with love and dignity.
Find some things in your life to be grateful for and dwell on them, it is impossible to feel sorrow and gratitude at the same time.
Sending the hugs back to you and yours.
Any advice on how to do this one. Recently I have been Noticing how no matter how many Good things I do in a year once they’re over they don’t really bring positive feelings the same way that the bad things pop up and make them selves dwelled upon.
There is really no tricks to do this, anyone who says otherwise is lying. We are not designed to "feel happy" we are designed to reproduce successfully . Don't strive to be happy all the time.
I am sure even dalai lama has a nagging inner voice thats harshing his buzz all the time. All the stuff these folks preach is just entertainment.
Inner voice has been conditioned by evolution, food, famine, floods, climate, culture , your body, your parents and host of other fears and hopes. You cannot simply trick that voice into thinking happy thoughts.
That’s weirdly reductive. The point isn’t to feel persistently happy—happiness is fleeting— it's to not feel hopeless and inconsolably miserable. I’m chemically prone to depression— diagnoses and everything— and even at my most depressed I’ll still feel moments of happiness. It’s the pervasive lack of hope, vitality, and the ability to see what’s good in your life that’s dangerous. Feeling grateful might not be a silver bullet for being in this mental state, but trying to more objectively view your situation in context and recognizing the good parts is an important part of grounding yourself when your perspective is skewed by depression.
An addendum: not sure if you were speaking figuratively, but an inner voice constantly preoccupied with potential catastrophe (even at a small scale, like minor social embarrassment) is a pretty strong indicator of an anxiety problem, which is eminently treatable. Even for people that chafe at the prospect of medication and traditional talk therapy, CBT specialists can help you implement some practical mental tools in only a few visits without protracted emotional history explorations or anything resembling them. The technique has proven to get quick, meaningful results for everything from combat PTSD to ADHD to depression and beyond, and can be a fast path to achieving good mental hygiene. Anyone reading this who’s curious about their own anxiety level should find an online questionnaire by a reputable, specialized mental health organization (i.e. not buzzfeed, et al, a pharmaceutical company, or someone trying to sell you therapy) and be honest in your answers. You shouldn’t need to create a login or divulge any identifying information.
if you could watch that voice, maybe it will shut up or u can make peace with it?
I hope this doesn't sound overly simplistic, but it has changed my life. I have struggled with anxiety and depression for most of my life. A couple of years ago, a therapist said, "Have you tried thinking of something else?" when I was explaining running through anxiety-inducing scenarios in my head.
So now when something that causes anxiety or dread starts to show up in my head, I immediately say "I don't want to think about that" and I say a little prayer. Sometimes, I keep repeating the prayer to keep my mind occupied on something besides dread.
i try to focus on positive experiences. that can mean trying to think of a positive memory or daydream about something, but usually it is immersing myself in a game or watch a movie, or listen or a story or audio drama, or writing.
one thing about writing vs daydreaming. daydreaming tends to have a bad reputation: https://en.wikipedia.org/wiki/Daydream#Benefits_and_costs but to me, a daydream is just a story not written down. when i focus on daydreaming i am literally doing the same thing as when i am focusing on writing a story.
i also write down positive experiences so i can revisit them if i feel the need (although i never do that. it's enough for me to know that the memory is saved)
you could try listening to entertaining podcasts if you want something to distract you while doing other work.
another thing that i found when i miss someone, is that drawing them lets me feel closer to them. if you want to try that but worry about your drawing skills, i recommend taking a photo of that person, break it down into small rectangles and then reconstruct the photo one rectangle at the time. that ensures you get the proportions right even if you don't have any drawing skills and you won't get frustrated that your drawing looks wrong.
I struggle with it too. Remind yourself that bad feelings are like storms, they will soon pass.
This is very much the opposite of my experience. Being grateful even for the losses that have brought the most sorrow, the two things at the very same time, has ripped me apart, but it's also been the only way through.
ETA: I say this not to contradict you or deny your experience. I say it in case other people are thinking their experience might need to include both, so they're encouraged to realize that, for some people, it's not impossible, but necessary.
Whether or not you express this sentiment as a Christian, this is a core tenet of the teachings. Despite being reminded of this by a close counselor in the beginning of my own tragedy, I have yet to fully come to terms with it. I know I need to, and I try, but I'm still bitter about it, and I know I'm still only faking it. In fact, I think I'm reading this story and your comment at precisely the time I need to in order to finally admit to myself that this is also my only way through. I gotta be honest: I never expected to hear the voice of God speaking through this forum. Thank you.
I do express it as a Christian, and I don't believe I could any other way. After losing my sister and my nephew six years ago (today would have been her 36th birthday, actually), I tried mightily to come up with any other way through, and it just didn't, couldn't, happen.
There's a line at the end of the book A Song for Nagasaki where he says, "For all that has been, thank you. To all that will be, yes."
I think the journey of my life of faith is one of coming to mean that.
Peace to you.
That’s a beautiful line. Thank you for sharing it.
This is an amazing writeup. I have lived the past 10 years in a situation with many parallels to yours, and at the same time unimaginably different.
When you say "It's not hard" you hit on one of the things I've always found difficulty to tell people. It's not hard, because it's the only thing to do. That certainty means it's painful, tiring, and many other things; but not hard.
My experience is that it only becomes really hard when you contemplate alternatives, imagine things being different, or daydream of a different life.
Isn't it hard to do though? I fear I may be a monster for thinking this, but is the pain of the son and yourself worth it?
Meaning, is all this being done for some hope that the miracle pulls through? What if you knew with absolute certainty there was no recover and no brain activity, only pain.
So this is hard if you have a choice, what is the right choice?
Do you think he has not already turned this question over in his mind for many agonizing hours?
I think he has thought about this question and 1000's of other scenarios that we will never know.
I write "you" figuratively, interchangeably as "one" or "oneself". I don't expect a reply. I'm asking for others sake or just simply to put my own thoughts down.
In case it helps — I actually have no expectation and hope of a miracle. Having my hopes absolutely crushed is what gets me through the day. The fear and uncertainty of having something to lose was and is far worse (to me) than the grinding daily commitment to meet his needs.
Maybe a miracle will happen one day but I have no expectation of it. I expect him to stay in that bed for years until he dies.
I see, thank you for the clarification and sharing. I don't think I could do what you're doing. That is what I mean by choice.
I'm holding my 6 week baby boy right now as he sleeps. It is painful just to read your story, but also humanizing and helpful in a way.
As someone who is very risk averse I wonder if using certain philosophies can help hedge against this kind of pain. But then it might have it's own consequences. I've used this in the past with partners (visualizing them leaving) but I'm not sure it would work here.
Is it possible to love your son so much but not feel an equal amount of pain with loss.
I lost my mother over 23 years ago, and one of the the hardest things for the longest while was anytime I would travel somewhere amazing, whether a city or country or the top of a mountain, knowing I'm seeing something she never saw, but might have, and what a kick she'd get out of it. It's always been in the back of my mind.
Now the hardest thing is realizing she'll never know her granddaughter, and vice-versa. Not to mention how much my daughter looks like her. But that's also a beautiful reminder of the cyclical nature of life and all its seasons.
Same. My mom was so unbelievably excited about eventually having grandchildren, it was one of her biggest desires after she'd lost her job and stayed home to take care of my various illnesses. She passed 2 years and 2 days ago. She had a long and... there still aren't words to describe the absolute horror. But i stayed there because i was the only one who could work from home and who could stay positive in the face of the impossible.
By the time i realized i should've been having every conversation possible she could no longer speak well, it just went one day, i have a recording of her struggling but i don't think i could ever bring myself to listen.
One new thing that's cropped up is thinking how much she'd enjoy some new youtube video i saw, or how funny she'd think a new "advertising photoshop fails" subreddit would be. And yeah, the grandchildren. There's a strong possibly she will have never even met my future wife. She didn't see my brother get married. She won't see me get aPhD. She was 60 and was there for so many things but the cycle just keeps moving on.
Life simply takes things, we're the ones who think we deserve them. The fact that we're anything at all is the greatest gift and the greatest pain. But i believe Tolkien said, "What punishments of God are not gifts"
My hands have similarities to both my mother and father who both died recently. When I'm stroking my 5 year old's face as he falls asleep (and he takes bloody ages to fall asleep) I like to think I'm giving them a chance to touch the grandson that they knew all too briefly.
(Great job autocorrect - almost changed "stroking" to "striking" there!)
I couldn't bear to finish reading your story, for which I apologize. Our son is physically and developmentally disabled and though not at all near the level of yours, he will probably require assistance for the rest of his life. I will think about your family and story often, and may God keep you all, especially your beautiful little boy.
Agree that this is very heavy. I appreciate OP's vulnerability. I've got little ones and I need to read this; I just can't right now. I'll be glad do donate to OP if that's what we're doing.
He said the article was not about asking for money
And to anyone who feels like telling me what a bad person I am for drawing the line in a slightly different place than you do on Euthanasia — go read Four Magic Words before you post something glib assuming you know anything about my reasoning and motivations.
Go ahead and have a reasoned debate about euthanasia if you want — I’ve never subscribed to “the person who is suffering the most this second gets to be right about everything.”
Just know five things:
1) I respect you if you would make a different decision than I would.
2) I landed in about the most controversial edge case imaginable.
3) You don’t know me
4) It has not been sentimental, romantic, or spiritually invigorating. It’s been horrible.
5) I don’t do this because I can’t emotionally bear to be parted with what’s left of him. It’s the opposite if anything.
Hey man, I don't know you and you don't know me, but if I may I'd like to point out that you don't have to explain your feelings or thoughts to a bunch of strangers on the Internet. Just getting them out there, in this form, is a gift for anyone willing to receive it.
Thank you.
I don't disagree with you, but it actually seems like a great strategy to avoid internet arguments... My grandfather used to tell a story about how when he was a child he'd get beat up on the way home by the bullies on the corner (circa 1950).
He resolved it with a similar approach - run in headfirst, fists flying, clobber everybody before they knew what hit em, and bounce. Seems a good idea to quash the trolls before they even get started.
My son has a severe intellectual disability, he's non verbal, still wears diapers (age 12), and requires assistance in almost every aspect of his life. I still remember the day we received his diagnosis 9 years ago. The word "devastating" can only describe a small part of what we felt. Today, I consider him a gift from God. He made everything fall into perspective. His purity and unconditional love brings us tremendous joy, even though the physical and mental aspects of caring for him can be tiresome sometimes.
I know how it feels when calamity hits. It's ugly. But with, time it gets easier. Hang in there, and know that you're not alone.
My son turned 18 this week, and his condition is similar, with additional physical limitations (severe CP via PVL)
Parenting him has been the hardest thing I’ve ever done, but there have also been moments of joy.
Hang in there, take care of yourself, and get as much help as you can. Being a carer is a huge job.
I wrote a little here: https://x.com/dnf/status/1746775939961528693?s=20
What a beautiful young man <3 God bless him. Thank you. I know there are many parents out there going through the same circumstances. It's always heartwarming to see this kind of solidarity and support. It does help.
I appreciate you finding a way to so eloquently put your thoughts into words. For the longest time, I always felt like a terrible person or somehow socially or emotionally broken for being unable to respond to others grief. It's not that I couldn't imagine it or somewhat feel how they were feeling, but simply the wish that there was sentence or string of words I could put together to make it all okay. I guess anyone who has ever loved someone has felt the same :(
Godspeed.
Literally nobody knows what to say including me. It’s okay that it’s not okay.
I've been debating on responding here and well you can see my decision has been made. The caveat is that this response is also biased on my personal experience so your milage may vary.
But for anyone reading this who is adjacent to a close friend or relative or even a stranger that is experience traumatic loss the grieving process is a messy thing. No one experiences it the same way. Second-hand grief is similar.
So rather than "try to fix it" by saying anything, say nothing, and just be present. Just sit. That says more than words. And if you can't be there, notes of "You are on my mind" are good too.
There is no fixing grief, only going through it.
<3 Thank you for writing so beautifully and sharing so openly. Can I ask if you've sought support or community in other parents who have gone through similar losses and are battling this newfound duty? I can't figure out whether that would help or hinder. Perhaps the latter if it is too morose or retraumatizing.
Yes, I have resources and support, thankfully.
Looks like an Orthodox Christian family? If so I will write your baptism names down at church if you are willing to share them.
That's kind of you. You can email me at lars dot doucet at gmail dot com
Hi Lars
Thank you very much for this write-up.
I lost my 21 year old brother in law to leukemia a few years back. Even though I didn't experience the same severity of pain as my wife or in-laws, I was still there through all of it. I saw my parents-in-law taking care of their dying son, who only a few months ago was a promising ornithology student, and the fittest player on his soccer team. What you wrote resonates a lot with what they said, and what I saw them go through.
Thank you for including the reference to Daniel 3, it has been a source of strength for my in-laws too. My brother-in-law got a lot of his strength from Philippians 1:21 "For to me to live is Christ, and to die is gain."
The love and care that you provide to your son does not go unnoticed or unseen.
One thing I learned from my in-laws' tragedy, was that the grief never goes away, but you will grow stronger in dealing with it.
I will be hugging my own kids extra-hard when I get home from work this afternoon.
Picture your life as a a big, clear ball. When the grief first happens, it's like a giant, dark ball suddenly fills up the entire ball. There's nothing else. Everything is pain. Everything is grief.
People think the dark ball is meant to shrink over time, but in my experience, that's not it at all. What happens instead is that, slowly but surely, the clear ball gets bigger.
Eventually, not every moment is grief. Not every moment is pain. It's still there. It's never smaller. It never actually even hurts less. But you grow around it.
Losing someone to death is like if a color suddenly disappeared from your whole world. Let's use yellow. You've encountered so much of your life with this yellow in it. The more closely things were associated with this person,the yellower they are--and the more wrong they look now that yellow is gone.
Over time, you get used to the way they look, but you never really forget how they looked back when they were yellow. They're not as beautiful now.
But then there are other things that you encounter that haven't ever been yellow, places that person never went or things they were never a part of. You can imagine how much more beautiful they would be if they did have yellow, but they don't look wrong to you without yellow. They just look how they look, and that's the way you expect them to be beautiful.
I don't know if these images are helpful to anyone else, but they've made a big difference to me on my own grief journey, and since today would have been my sister's birthday, I thought I'd share them.
Thanks so much for having written this. My deepest condolences, God bless you and your family.
Thank you, for all 3 blog posts. My wife and I experienced a still birth after a tragic cord accident on Dec 24th, two weeks from our due date. Your words have helped me bring some clarity and comfort to my situation. Thank you.
Can I send you a book? My email is on my website in my bio but I cannot find a way to contact you to ask.
Thanks for sharing your story. I want to acknowledge you we feel your devastation. Accept my virtual hugs. I wish peace and harmony to you, your family, and your son.
Lars from what I've read you seem like a very strong and capable person. A lot of success, great relationships and a beautiful family. When you get to this point in life there frankly isn't much left to learn or to grow. You are the kind of soul destined to go even further. It's a brutal harsh beautiful reality. It will test and grow your faith to heights and depths that will astound. You have and will continue through this with whatever it takes. I lost my 15 year old daughter a year and a half ago. It's not the same as your circumstance but I'm sure you'll be ok. PM me if you want to talk.
I sent few suggestions to your email leveluplabs@gmail.com. Is this the best email to reach you?
Stay safe and stay healthy, your other kids still need you. Your Son will be alive forever on your heart and memories. Stronger than the death, just the love, I heard once.. stay strong!
I also had a bit of an annus horribilis last year, and ended up taking almost a year off of blogging out of a sense of embarrassment and shame. I wanted to thank you for having the courage to write this and share the work through which you have been processing everything. It really would have helped to see all of this writing about 10 months ago, so I am glad it is here for everyone else and for my own inevitable next time at "rock bottom."
I also wanted to encourage you to keep going with your creative work, because I know it can really help fathom the depths of your mind in a way that "logical" thought really can't. For me, it was playing the piano and writing some (bad) compositions. You write very well, and I hope it brings you some clarity and relief.
Thank you and my best wishes to you and your family.
Thank you for sharing this. I've been going though it for over a decade and I rarely talk about it. I'm almost ashamed of it for reasons that I don't think I can put into words right now.
But I feel so isolated sometimes. Physically because it's so hard for us to go out, and mentally because if I share the details with 'ordinary' people it just tends to alienate them. People want to hear about softball tournaments and class plays, not feeding tubes and adult sized diapers. It's important for me to remember that I'm not uniquely cursed in having to deal with this.
For the last year my father has been in a similar state, after suffering a massive stroke. You articulated some of my feelings in a beautiful way, even though our circumstances are quite different. Thank you. I wish you peace and joy.
Every parent's worst nightmare. Godspeed, Lars.
I have had a stressful, difficult week. Work is volatile right now, and it's taken a toll on my mental health.
Your story took me entirely out of that state, and your words regarding joy and optimism... reframing unimaginable to unfathomable, in particular... have both lifted me and left me with a feeling of unquenchable desire to help.
Thank you for sharing your story, and for being so deeply authentic throughout.
My heart goes out to you. My youngest son is the same age, with a permanent disability which for now we've managed to avoid the worst consequences of thanks to risky but ultimately successful surgeries, but there's an ever-present fear of what his future will be or when will tragedy strike. I just have to live for today, take things one day at a time, and not project into the future. Of course your circumstances are on a whole other level of difficulty and grief, one which I don't think I could handle, and I admire your ability to cope with it to the point of being able to write about it. Sending much love to you and your family.
My love to your family too, Lars.
That you’re finding so much comfort and resilience in your faith is an inspiration, and may God bless you all as you care for each other moving forward.
I am sorry. My thoughts are with you and your family.
This. I'm in a much less tragic situation with an intellectually disabled kid. After all the struggles to diagnose, potentially treat, and finally accept his - our - fate, the whole ordeal ended abruptly with this very same sentence. I am at peace now taking care of my kid.
I hope and pray that the whole family and everyone his life has touched gets some closure. What you shared broke probably many of us but somewhat was one of the most strengthening things I've ever read.
Thank you. I don't know you, but I love you.
Thanks a lot for that write-up. Sent a very heartfelt prayer for your son. Life is hard beyond measure sometimes. Will give my daughter an extra hug when she is done with kindergarten later today; that much is for sure.
I don’t know you, but I have two little girls and I’ll be hugging them very tightly in the morning when we get ready for school.
I lost my brother a while back. It never goes away. All that the living have is life. Adore it.
Stunningly beautiful write up, Lars. You have an amazing gift.
God bless you and your family.
<3
Thank you for sharing. As a new father myself, my heart goes out to you and your family.
Thank you for such a vulnerable description of your terrible journey right now.
Thank you so much for sharing this. God bless you and your family.
I have two disabled siblings, what I wish I could do is give my parents (who are both dead now) some appreciation of how I now appreciate as a parent how hard it must have been for them and what a splendid job they did for all four of their kids.
We love you too.
Lars, I opened this comment box because I have been through some of what you are going through. I hoped to offer you some comfort. However, as I try to type this, I realize I cannot. Ambigous grief is a bitch. There are no platitudes I can offer. I am sorry you are going through this.
Thanks for sharing your story, God bless you and your family.
Where did you get that haunting image describing Elder Sophrony of Essex's quote? I love it. I love the tunnel of light juxtaposed with the abyss. And, of course, the simple table with tea.
Is the image copyrighted?
I have nothing useful to offer you other than my heartfelt tears and my sorrow. Your writing moved me in a way I cannot explain. God bless you and your family.
Thank you for writing this. I lost a family member recently too (not a child thankfully, but someone who’d lived a long and full life).
Not many things I (or anyone else) can say about what your family is going through. I wish patience and courage.
Your short story "Four Magic Words" is great and I can see how it's affected by recent events. When I saw the Greek phrase "Η Aνθρώπινη Ζωή Εστίν Ιερά" / "Human life is sacred", and after having read your post about your son, I understood that you have some connection with Eastern Christianity.
Being Greek and Christian myself (but not hardcore or old fashioned) I sympathize with you on many topics and wish for the optimal outcome in your family strugles.
Chiming in to say that the Ballad of St. Halvor was one of the nicest poems I’ve read in a long while, and kind of inspirational. I think I really needed that.
God bless you and your family!
I have an adult child with severe mental illness. It makes life less-than-easy, but others have it worse (including her). She will probably live with us until we check out. One of the things that concerns me, is how to help her, after we are gone.
I have also had many close associations and friends lose children, relatives, and associates; often, to unnatural causes. It has to do with the demographic I hang with.
I'm not emotional man, but the post made me tear up. Thank you for writing this I found it insightful compassionate and educational. I wish you all the best.