Comment by larsiusprime
1 year ago
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/
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.
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Hi Don - I don't know you but I feel like I do now. And your son as well. Thank you for sharing that tweet.
God bless you and your family Don.
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.
> it is impossible to feel sorrow and gratitude at the same time.
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.
> 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.
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.
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Agreed, this was my reaction as well. One of the most tragic feelings I've ever experienced in the realization of how lucky you are once something is gone. This is one of the defining aspects of my experience with lost relationships and the death of friends and family.
> 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.
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.
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.
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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.
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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.
I've heard it said that "happiness is a fleeting feeling and joy is a state of being."
Any time you have the opportunity to experience gratitude, contentment and appreciation for what you do have it brings a great deal of peace.
I appreciate that your post is thoughtful and has good intentions, but can i suggest not telling people how they can or cannot feel, or what they should or shouldn’t do? (hah. putting myself into this basket for a second and acknowledging this comment)
emotions are complex. you can show compassion and empathy without instruction?
inshallah
So you are instructing me not to offer instruction?
> it is impossible to feel sorrow and gratitude at the same time.
I would’ve said this too, until 12 months ago. I lost my dog suddenly. And then some weeks and months later I started to feel her presence running up alongside me when I would walk in our familiar places.
In those moments I felt elation in her presence and also utter despair in her loss all at once.
It was a strange experience but also clear as day.
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.
I have seen many people like you respond here, but I felt a need to talk to you. I have a different story. I have convinced 2 partners over my younger life to have abortions. I was young and stupid. I thought life would continue in the grandest way it seemed then, and got caught off guard and was terrified. I have since had 2 children, and the sorrow and devastation of my past choices now haunts me. The love I lost. Not getting to hold and care for them.
You might say "get over it and stop feeling bad - you have something good," and I know I do, but the past hangs over me like a never-ending storm. How can I ever forgive myself for what I did? The thought of them safe in their mother's wombs and being ripped out...I can hardly bear it. I carry this pain daily. I have since learned that having kids is the best thing that ever happened to me. It taught me how to love in a way I hadn't ever before. Having this knowledge makes the past even harder to accept. Who would those unborn have been today? What would they have taught me? How can I be a caring person to have done this?
I can't say I can relate to your situation, so please forgive any apparent glibness, but I would gladly sign up to go through what a lot of people here have done for their children with special needs just to have the chance to have known them. It may sound easy for me to say, but be glad you didn't make my choices. If someone else reads this who did, please know that there is also a part of me that realizes I thought things would be different, and I went on the information I had, which was bad. I'm not at all judging you. You did the best you could. Despite me sounding self condemning, I'm just very regretful that I didn't make a different choice.
All this to say: I hope you find a little more validation from my story that you are on a good path, and that you are not cursed, but rather have a gift. It's a gift I chose to throw away. It sounds like it's hard to manage at times but it's very much a gift. I know that sounds dismissive and cheesy, like everything everyone would say because it sounds good and doesn't acknowledge the real sacrifices you've had to make in comparison to friends who don't understand, but I want you to know that I truly mean it, and I understand, maybe unlike others who say it, what it really means, because I look at you and want so badly what you have, if it meant having all my children alive in my life. Your child taught you how to love - deeper and more alive than anything else possibly could have. It may seem like life/God used force to shape you like this, but I'm learning that's the only way it can work sometimes. You have to get to a point where you are willing to see it differently, and God will find a way to show you that. Maybe your child's presence forced you to make a choice to break through your own ego and be willing to love them. If so, it no doubt transformed you. Learning that is the greatest lesson life can teach. You are on a good path. It won't be evident for a time, but you absolutely are. I send you my best.
This is one of the most moving things I've ever read on this site. Thanks for sharing your experience about a topic like this, where any discussion turns to the politics of the topic rather than the emotional impact it can have on real humans. Be well my friend, I'm sorry that you're having a hard time forgiving yourself.
This reduced me to tears.
I'm so sorry for the pain you've gone through due to your past choices, and the loss you've given voice to here.
I hope you find some measure of peace. Thank you for sharing what you've gone through and what you've learned from it.
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.
> 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.
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.
Thank you for sharing these. My brother was murdered a year ago and today I’m trying to finish writing my victim impact statement to be read at the sentencing of his killer. I’ve been frozen in my processing for several days and your descriptions helped me place myself back in my body as I tend to disassociate when faced with the overwhelming grief of his loss.
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I've been reading your comments in this thread and wanted to say thank you. I recently lost my parrot (not directly — I had rehomed her with a friend and there was an accident with my friend's parents) and so much grief and regret choked me for a few days. But the ball has grown around it. And I am grateful that I had her company for a few years. Thank you.
Yes, that's a very apt description
What a helpful post!
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
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.
> contemplate alternatives, imagine things being different, or daydream of a different life
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!)
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?
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.
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Do you think he has not already turned this question over in his mind for many agonizing hours?
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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.
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.
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
>>> We take this burden gladly.
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.
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.
> 4) It has not been sentimental, romantic, or spiritually invigorating. It’s been horrible.
I've been reading everything you've posted and this is my favorite line. Nothing about what's happened with my son has made me better.
It seems you are following the ethical course, and this is commendable. As you may already know, in ethics we distinguish between ordinary and extraordinary (or disproportionate) care. But while we may licitly refuse disproportionate care, at least in many cases, we cannot intentionally cause the death of anyone (ourselves or another; the "self-ownership" thesis is likely responsible for the view that we can licitly do anything to ourselves as if we were some kind of property, but we are not objects, and what is morally good is objective and not fully accounted for by consent, or utility). We may not purposefully speed up anyone's death, but we can, in some cases, where proportionality is preserved, permit treatment or refuse treatment, knowing that an unintended side effect is the hastening of death (like, perhaps, alleviation of pain).
In any case, know that such circumstances as yours, if we respond to them rightly, perfect us in the virtue of charity, the highest and greatest of virtues.
I wish your son, you, and your family comfort and joy. Do not despair. Fear not. Pax vobiscum.
I find your comment very distasteful. It is written as if you know The One True Path, and anyone who strays from Your Path is unethical.
I find your comment particularly distasteful in light of the fact that you were replying to a comment by the writer in which he acknowledged that people might make different choices if placed in the same situation that he was in.
Finally, some of the things you wrote are obviously wrong. For example:
>We may not purposefully speed up anyone’s death
Nonsense. If someone is trying to kill me, I may be justified in killing them.
> what is morally good is objective and not fully accounted for by consent, or utility.
Could you elaborate here? I'm curious what is meant by this.
At 49 I became a new father. My son (perfectly healthy thus far) is now 2.5 years old.
When I became a parent (a thing that the docs said was "likely impossible" given the obstacles in my and my partner's bodies, and yet here we are with what will likely be my only child ever), a number of perceptions changed, and one of them is that I can never look at any story involving parents, children and tragedy the same again.
I found it supremely difficult to read your piece but I did it anyway. ..... aaaaand I just had to pause because my eyes welled up at the end of the last sentence.
So I'm going to say nothing, because as you said, saying anything is awkward, and you already know how I feel to an extent, because you were a new father too once and terrified of stories like this (much less living one), so in honor of you sharing this part of your life story, I will make sure to hug my son when he returns from daycare shortly, because at the end of the day, love is the only currency that matters.
Keep loving that kid, even given the current situation. I know you have no choice, but keep doing it anyway. Much love to you and yours.
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 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.
This is not just moving but helpful.
Many years ago, being newly married, I worried about my vulnerability in case my wife died. So one night, while away from her on a business trip, I tried to imagine and fathom her potential death. I was able to do this— or I should say I BEGAN to be able to do it, when to my alarm I felt my mind beginning to detach from her.
I realized from this exercise that the price of love is grief. Grief cannot be minimized or habituated without sacrificing what makes living wonderful.
I have now been married 32 years and have a 30-year old son whom I am equally besotted with. I am fully aware that the death of either of them will vaporize me as I know me. It is a black wall. I can’t and I won’t fathom life without them.
I will simply pay the price.
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.
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.
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.
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.
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.
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.
Literally nobody knows what to say including me. It’s okay that it’s not okay.
<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.
> 17 If it be so, our God whom we serve is able to deliver us from the burning fiery furnace, and he will deliver us out of thine hand, O king. 18 But if not, be it known unto thee, O king, that we will not serve thy gods, nor worship the golden image which thou hast set up.
Thank you so much for sharing this. God bless you and your family.
Thank you for sharing, and for writing so clearly. I just finished Four Magic Words and enjoyed it very much, including the author's note. Just bought your book as well. I wish you joy even in these difficult circumstances.
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.
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.
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 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.
Perhaps this is morbid curiosity getting the best of me, but your last sentence was a surprise. What demographic do you hang out with that has such a high rate of death due to unnatural causes?
I can’t get specific. Suffice it to say that we are working to recover from destructive pasts. Sometimes, we don’t succeed.
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> I love you all. Hug your kids if you have em.
Hi larsiusprime, thank you for sharing. Right back at you.
My brain has been turning your words over and over this morning, trying to make sense of them. Trying to understand how I feel about them. I still don't know how to feel about them, but I really connect with the humanity of your story.
Four Magic Words was brilliant, I'm sure that story will sit with me for years.
Hi Lars,
Sorry for your loss. I myself have two sons and almost cried when I read your post.
I just wanted to respectfully disagree that losing a child was that commonplace until approximately yesterday. IMO it's such a common thing that even today millions of people around the world suffer from that [0]. It's equally horrible experience to lose a child to what you describe in your post or to lose a child due to something this: [1]. (One could argue that a child simply dying is slightly better than having them brain dead for the next X years. But... let's leave it aside for now.)
My humble suggestion would be that maybe it would help to focus on preventing other children die. But IDK, I'm not a psychologist.
Chreers!
[0] https://ourworldindata.org/child-mortality
[1] WARNING: pretty graphical https://w.wiki/8thW
Stunningly beautiful write up, Lars. You have an amazing gift.
God bless you and your family.
Wow, "Four Magic Words" is incredible. Up there with some of the best sci-fi short stories I've read.
This is timely. We just lost our unborn son unexpectedly. He had been diagnosed with some issues with the heart and other organs. We were gearing up for multiple surgeries, a high-care situation, and him potentially not lasting until teens.
We didn't get to make memories with him, or see who he would grow to become. This is a blessing and a curse. But I believe that you and I will both meet our sons again one day in a place where there is no sickness, sadness, or death.
Romans 8:16-17
[16] The Spirit himself bears witness with our spirit that we are children of God, [17] and if children, then heirs—heirs of God and fellow heirs with Christ, provided we suffer with him in order that we may also be glorified with him.
Everyone suffers in this life. The choice is whether to suffer with him or without him.
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.
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.
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.
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.
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?
The quote was one of my wife’s favorites. The image is just from ChatGPT and I believe the current legal doctrine is AI generated images aren’t copyrightable.
It's AI-generated. Beyond the style/composition being typically AI, the filename says:
>DALL-E-2023-12-02-15.50.18---A-serene--contemplative-scene-inspired-by-Elder-Sophrony-of-Essex-s-quote.-The-image-depicts-a-peaceful-landscape-with-a-deep--dark-abyss-in-the-backg
My generally bright 3-year-old son has a physical defect that will make life harder for him, and that is reparable by now-common-enough surgery, the sooner the better, but requires general anesthesia.
"Is this worth the risks of general anesthesia" has a different balance for me after reading your story. Intellectually, I know there's risk for any sort of anesthesia, but you've given me some harsh emotional reality.
I'm sorry that this happened to you and your son.
Anesthesia definitely has non-zero risks, but for what it’s worth was entirely uninvolved in this accident.
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.
Thanks for sharing your story, God bless you and your family.
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.
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.
FWIW, in case you haven't got it from somewhere else or noticed here, he says in several places that his email is lars dot doucet at gmail dot com .
Sorry if it's presumptious to jump in in your place Lars, undskyld, but I'm going on the premise that you just missed this question.
Good luck Nerdhead; all the best Larsius.
Thank you,
Sent an email.
> I love you all. Hug your kids if you have em.
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'm sorry to say i know your pain.
No words will make this easier, it just dulls over time.
I understand the motivation for stability and applaud you for that. My experiences were similar.
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).
I sent few suggestions to your email leveluplabs@gmail.com. Is this the best email to reach you?
Thanks so much for having written this. My deepest condolences, God bless you and your family.
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.
I can emphasize and relate. Unfortunately.
My wife of 10 years died of something called ADEM. "Acute disseminated encephalomyelitis". I'll save you the search, it means something (often immune system) strips the Myelin off the nerves in the brain. No Myelin, no proper electrical conduction. In my wife's case it was described as "fulminant", which means "severe and sudden onset". No kidding. She went from standing and talking to bed-ridden and not knowing who I am in 4 days. 3 days after she was "solement", meaning she wouldn't wake up fully. This is commonly described as "being in a coma". About a month and a half later I stopped supporting treatment, just like you did. I, she, were "lucky" (heh) that she didn't survive much longer and died just 3 days after.
I remember the doctors explaining the MRI (took a long while to get a sympathetic neurologist that actually sat and explained to me what's going on), the hopelessness, the decision to pull support and accept whatever happens next. I remember telling the hospital staff "just make her comfortable", though I didn't believe she was still there. Her brain was too far gone.
That decision was the hardest I had to make in my life. "yeah yeah" people might say (not you though, Lars, you know). But no. It was the hardest. To give up on the person that made your life whole. To know there will never be a replacement. Hoping (sorry, not a religious person, I don't really pray. I did try to make lots of deals with god during that time though) that things will get better, then just easier, then finally just end quickly.
Brain diseases are horrible. They frighten me beyond anything else in the world. You see your person change, disappear. That made me not believe in after life, souls, etc. What existence can there be after if you see memories disappear all at once, basic abilities like talking, moving, eating. Maybe there is something, but it's not the person anymore. That was the brain, the memories, the learned behavior and experiences they had in their lives. And when it's gone, it's gone.
I know what descending to that dark valley is like. What walking through it is like. I hope you can come back up towards the light. Eventually. Maybe.
One bit of practical advice: Reach out to psychologists (talk therapy) and to psychotherapists (psychoactive medicine). It's not a shame, it's a strength. Your brain undergoes significant changes and things get out of balance. Talking, pills - they both help. Today's psychiatric medicines are much more advanced and targeted than even 10 years ago, not to mention Hollywood's depictions. "But I'm afraid it'll change me, it won't be me anymore!" - sure, but is being you that great? You can comment here and I can share my own prescribed cocktail to your blog email.
Be strong. The sun will come back up. It won't be as bright or as warm, but it won't be dark forever.
Every parent's worst nightmare. Godspeed, Lars.
I am sorry. My thoughts are with you and your family.
God bless you and your family!
We love you too.
<3