[HN Gopher] Losing my son
___________________________________________________________________
Losing my son
Author : lukeplato
Score : 2171 points
Date : 2024-01-18 02:34 UTC (20 hours ago)
(HTM) web link (www.fortressofdoors.com)
(TXT) w3m dump (www.fortressofdoors.com)
| Flatcircle wrote:
| What a profound article. Nearly brought me to tears.
|
| A truly amazing father and a truly amazing family.
| epistasis wrote:
| I know of Doucet not because of games, but because of his
| extensive work and amazing writing in favor of a land value tax.
| Seeing this article title last month was such a gut punch. The
| lessons in the article are so so valuable, however. I'm so
| thankful for Doucet sharing the gift of his writing on this
| topic, and hope that it was helpful for him to create it.
| rlabrecque wrote:
| This is so sad and well written. Lars is one of the best people
| I've ever met, no one should have to go through that, especially
| not him.
| supertofu wrote:
| Oh this is the worst thing that could happen to any parent, but
| the writing was beautiful and so moving. Thank you for sharing. I
| am feeling such a great sympathetic grief but also great awe at
| how palpable the love and care is in this writing.
| burlesona wrote:
| Lars, I was in studio with you at A&M. I'm devastated to hear
| this, and praying for you and your family.
| tlivolsi wrote:
| Lars sounds like an amazing father. My heart goes out to him and
| his family.
| xbar wrote:
| I am sorry for your loss.
|
| Thank you for writing courageously during this impossible time.
| mista2nith wrote:
| The writing is incredible, but what a truly unimaginable thing.
|
| God Bless you Lars Doucet.
| adverbly wrote:
| This is absolutely gut-wrenching.
|
| Lars is an absolutely incredible thinker with a polymath-like
| range.
|
| - He has done great professional work as a software developer
|
| - He has pushed forward arguably one of the best economic
| policies for modern times(land value tax) through both a
| startup[1], and writing[2]. I particularly like his interview
| with Dwarkesh Patel[3]
|
| - He contributes core thinking to rationalist communities. Just
| the other day I completely randomly encountered him as being
| submitter of the primary US Election 2024 market on the
| forecasting site manifold[1]
|
| The two most impactful thinkers/writers in my life have now had
| to survive through incredible loss(Douglas Hofstadter - who lost
| his wife after writing GEB is the other). Wishing you all the
| best Lars.
|
| Sources:
|
| [1] https://www.valuebase.co/
|
| [2] https://www.landisabigdeal.com/
|
| [3] https://www.youtube.com/watch?v=sL-qkv7Pzxo
|
| [4] https://manifold.markets/LarsDoucet/will-joe-biden-win-
| the-2...
| quickthrower2 wrote:
| I knew the name on Manifold as the creator of some of my
| favourite markets.
| zeven7 wrote:
| > The two most impactful thinkers/writers in my life
|
| I am not familiar with the author, but after reading this
| article I am interested in learning more him and his other
| thoughts. Can you provide a good starting place for reading
| material? Specifically something that you feel affected your
| life.
| thicknavyrain wrote:
| Land is a Big Deal is a great place to start (and his three
| articles summarising Georgism for SSC, also on his substack
| named after Henry George's book "Progress and Poverty", which
| contain much of the same content).
| aaronsimpson wrote:
| I don't know about the previous author or if it's even his
| best, but I learned about Lars through a Slate Star Codex
| guest post 2-3 years ago.
| https://www.astralcodexten.com/p/does-georgism-work-is-
| land-...
| edc117 wrote:
| Way back in 2012, this affected a lot of my thinking around
| software piracy/selling software, and I think a lot of it has
| proven pretty insightful in the intervening decade:
|
| https://www.fortressofdoors.com/piracy-and-the-four-
| currenci...
|
| The images are shot, but that may be all the attention his
| site is getting today.
|
| Edit: Many others are already saying it, but thank you for
| sharing, Lars. No one should have go through this, and your
| thoughts were beautifully written. Makes me feel very
| grateful/humbled for so much that I take for granted.
| metflex wrote:
| brought tears to my eyes, thank you for giving out such valuable
| lessons by writing this article. i hope you and your family will
| have the best days ahead of you <3
| arunc wrote:
| Sad and terrible! Reminds me of a story I read when I was young.
|
| An Indian emperor invited a wise man to his court and asked him
| to write a wish that will last forever. He wrote:
|
| 1. The emperor dies
|
| 2. His son dies
|
| 3. His grandson dies
|
| The emperor was furious and ordered him to be punished. The wise
| man asked if he can have an opportunity to explain and the
| emperor agreed.
|
| The wise man explained that he wrote what he wishes as the
| natural order of life in the kingdom. He asked the emperor to
| consider how terrible the situation would be if any of the order
| in that is changed. The emperor realized the truth in this and
| thanked the wise man.
| ChatGTP wrote:
| Maybe not the best time for that story.
| binary132 wrote:
| How terribly sad and also very moving. Hope (is this Hope? it
| seems that way to me) is a powerful and beautiful virtue.
| reactordev wrote:
| As a parent who has lost a son - I feel this immensely. At least
| you can see his face. That's more than I can say for mine. He'll
| forever be 12 years old to me. What helped me was giving back.
| I'm sure the road ahead will be hard, but don't give up.
| tlivolsi wrote:
| What was your son like?
| reactordev wrote:
| I'd rather not, if you don't mind.
| tlivolsi wrote:
| No worries. I understand.
| imetatroll wrote:
| Very sorry to hear. I lost my boy five years ago and it just
| isn't something that ever gets better in the true sense, but we
| all have to learn how to live with it somehow.
| reactordev wrote:
| Around the same timeframe and same outcome. Stay strong. I
| know exactly how you feel.
| owlninja wrote:
| I can't add anything more than what has been said. I wish Lars
| well and can't even begin to really feel what he is actually
| going through.
| pugworthy wrote:
| I knew soneone once who lost his wife with two small children. He
| started a "cheerful family" blog about how they were a cheerful
| family. Maybe I completely got it wrong, but it was painful to
| see. It seemed like denial.
|
| Yet saying that, I am currently dealing with end'ish of life
| things for my father at 94, so I understand pragmatic.
|
| My comment may be taken as wrong, but I hope that those that
| choose to vote (up or down) have gone through close loss before
| they choose to say they understand (or not).
| keithnz wrote:
| This feels horrific, this initial event essentially is the end of
| his son as he knows him, and eventually he will actually die. My
| only vaguely similar experience of this kind of thing is my
| grandfather with Alzheimer's, but it felt like a natural end of
| life scenario (a horrible one). But with my kids, and I do
| believe in euthanasia, I wouldn't be able to do that either. I
| don't believe in god, but I'd always think there's a chance that
| maybe things will improve. Very tough situation.
| ViktorRay wrote:
| This was a powerful read. I'm so sorry that the author's family
| is going through all this.
|
| I found that the quote the author put at the end of his essay was
| very memorable.
|
| _"Stand at the brink of the abyss of despair, and when you see
| that you cannot bear it anymore, draw back a little and have a
| cup of tea."_
| billyt555 wrote:
| I appreciate you sharing this
| acjohnson55 wrote:
| Damn. Just, damn.
|
| > Turns out, unfathomable tragic loss isn't very hard. It's easy,
| in fact. Easy in the same way that falling off a cliff is
| "easy"-gravity does all the work for you. It's not like climbing
| mount Everest, desperately putting one foot in front of the
| other. It's not like struggling to answer questions in a final
| exam. Tragic loss is just something that happens to you.
|
| I think about this a lot. The reality of life is that we either
| don't live very long or we experience unimaginable tragedy. But
| we figure out how to keep living in the new normal, because what
| else can you do. I guess part of being human is being able to
| exist as though this isn't true, and also survive when it
| happens.
| mberning wrote:
| Horrible. Just horrible. I could not finish it. My 3 year old boy
| is the most precious thing to me in the world. Losing a child is
| incomprehensible.
| pattesseriedude wrote:
| I'm really feeling sorry for both the author and his family.
| Can't imagine what they must be going through.
|
| When I was 10 my oldest sibling went through a coma and after
| coming out of it some time later she did some things that my
| parents were not happy about. My family was going through some
| things and me being the youngest was completely neglected. I was
| shoved in a room and my family being well off all the problems
| were tried to be solved by money. Then just as things were
| getting a little better for me between 11-12 I was molested a few
| times. I was too scared to talk to anyone. My parents were not
| bothered much. 19 years later today I have PTSD and I struggle
| with anxiety depression panic. In my entire life I had no one to
| talk to and no one loved me. I was unable to make any connections
| in life. I do therapy which helps a little. I fell in love with
| someone 12 years ago which was the only time I felt something in
| life but she never liked me and till this day I hope for a
| miracle. There was a time few years ago I was unable to leave my
| room without panic attacks as that was the only place I felt
| safe. Somehow I was able to work my way into a graduate degree in
| computer science from a top school and a job. However I still
| spent the last 3 days crying alone. I deal with it every single
| day every single hour of my life. Life gets better some days and
| worse some days.
|
| Anyway my point is that your children and your spouse need you
| the most right now. This is a turning point for everyone in the
| family. Hold them close. Talk to them. They may show they are
| strong and handling it well but they need you more than you might
| think. Some things cannot be undone. Some things cannot be
| changed. But many are in control today and a lot will be decided
| about the future at this time. So please just hold them close and
| tell them you love them. I will pray for you and your family.
| voisin wrote:
| I a sorry to hear what you've gone through and are still going
| through. I hope you find the peace you deserve.
| pattesseriedude wrote:
| Thank you for your kind words.
| l33tbro wrote:
| Heartbreaking that you went through all that.
|
| I don't mean to trivialize your situation, but I recently
| learned about nociception [1] and your condition reminded me of
| what sucks about it. Ie, the emotional trauma you now live with
| is almost more debilitating than the initial pain from the
| earlier events.
|
| It is such a terrible part of our physiology. It intends to
| protect us from so much pain, but it just ends up taking so
| much by preventing us from experiencing again. Wishing you the
| strength to keep working through this complexity and finding
| peace.
|
| [1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4529956/
| monero-xmr wrote:
| Pain, applied surgically, by people you trust.
|
| That previous sentence describes my father who was abusive in
| many strange ways. Sexual molestation was not included, so I
| can't relate there.
|
| My best advice is to succeed in spite of the barriers God
| placed in front of you. Ultimately it is you and God who care
| about what is happening moment to moment. Good luck
| devwastaken wrote:
| I've found the use of psychedelics and higher level thinking a
| particularly effective tool at mitigating the effects of PTSD.
| It's hard to explain but in some ways it's like when dr.
| Strange first goes to Kamar-Taj.
| antman wrote:
| Terrible situation but nice that you are aware and that you
| suggested for him to turn to family. Needed in similar
| situation so and I understand it has become quite common or at
| least people have been more aware recently regarding trauma and
| cptsd (and the nightmares).
|
| For those who have in their life people with emergencies due
| e.g. emotional flashbacks let me put this here:
| https://old.reddit.com/r/CPTSD/wiki/firstaidkit
|
| What has helped: "From surviving to thriving" book, "The
| Dialectical Behavior Therapy Skills Workbook", ipf protocol,
| avoid stoicism related thinking
| pattesseriedude wrote:
| Thank you for the suggestion. I am immediately adding the
| book to kindle and will start reading it today itself. I once
| read a suggestion about 4 years ago called 'The Body Keeps
| the Score' on a reddit thread. I was unable to finish that
| book because it was just too much for me given I could relate
| so much to it but adding that to the thread as that book was
| very important for me to understand many things for me.
| antman wrote:
| It is the most famous, that is why I did not mention it,
| you are not alone that it's triggering. Here is other
| people that felt so for example: https://old.reddit.com/r/C
| PTSD/comments/a93qs7/reading_the_b...
| piuantiderp wrote:
| Pattesserie, a bit random but try and do sauna regularly. Start
| with little. Can do wonders for emotional issue release; can be
| very intense at first, just be prepared.
| taopai wrote:
| I can't give medical advice, so I'll give none.
|
| A user recommended the use of psychedelics, I wouldn't.
|
| But try investigating recent literature regarding to MDMA and
| assisted therapy (with a professional) to treat and manage
| PTSD. If you are able to find a professional who is up to it,
| it could be something to consider. Is not a magic pill, but it
| can catalyze great results provided it's deeply integrated in
| therapy.
| pattesseriedude wrote:
| Escitalopram Oxalate
|
| This worked for me actually with CBT for some time now as
| quality of life was certainly better. But it had side effects
| like feeling emotionally numb and lack of sexual desire.
| Though I haven't ever even kissed a girl at 31 I thought that
| would be relevant in the future for any relationship as I
| tried dating a bit year ago and I felt emotionally very
| distant and cold for whatever reason. It's a common side
| effect of it I guess from what I hear.
|
| I slowly weaned off of it in 2023 with my therapist
| suggestion as I was doing okay even without it but I may have
| to go back to it for some time if things get worse. Not sure
| I'll talk to my therapist next month.
|
| MDMA and EMDR have been two therapies for trauma processing.
| I will keep an eye for it and talk to my therapist to see if
| he can refer me to a clinic who can help me in a controlled
| environment. Safety is very important from what I know when
| you do either.
|
| Thanks for your help.
| taopai wrote:
| Great to hear this.
|
| > But it had side effects like feeling emotionally numb and
| lack of sexual desire Lot's of friends who are in
| Sertraline has this adverse effect.
|
| > Though I haven't ever even kissed a girl at 31 I don't
| know how successful you are at dating but even so I'll
| recommend you "The Book of Pook" and "Anti Dump's Machine".
| Are two funny books you can find online for free. Don't buy
| them because they are recollection of blog posts from
| sosuave. They helped me mature in that aspect and give some
| good advice.
|
| > I will keep an eye for it and talk to my therapist to see
| if he can refer me to a clinic who can help me in a
| controlled environment.
|
| Sounds great. Also be cautious, you shouldn't take MDMA
| while on a SSRI like Escitalopram.
|
| > Thanks for your help.
|
| You are welcome, no problem, it's glad to hear I helped in
| some way. :)
| pattesseriedude wrote:
| Thanks for the suggestions. I'll check it out.
|
| Generally theme is that women tend to have a good time
| with me. Some have wanted to take the natural next steps.
| But I tend not to if I don't feel the same which is
| always the case and I end it as soon as it starts getting
| real because I am either afraid or there is some guilt
| associated with it. I'm not sure I will talk to my
| therapist about this. Interesting thing to explore in my
| next session. Thanks for enlightening.
|
| Also didn't know about mdma and ssri combination.
|
| I have a good combination of CBT expert and a therapist
| who prescribes me medicine who share notes so it's been
| working for me so far. I tend not to experiment things on
| my own without their referrals or suggestions. I've had
| bad experience with therapists before so I am very
| cautious about it.
| rahultuladhar wrote:
| Thank you for sharing your story. As you pray for the author
| and his family, I too wish to pray for you and yours. Take
| care.
| smeej wrote:
| My story overlaps a lot with yours, especially the parts about
| never being able to form secure attachments (though for
| slightly different reasons).
|
| I was stuck for a very, very, very long time until I
| encountered Internal Family Systems therapy. It has been able
| to help me _heal_ the wounds in ways CBT /DBT/talk therapy
| never could (and not for lack of trying).
| kraig911 wrote:
| Death can have so many meanings when I read this. I worry I'll
| forget what they smelled like, what they sounded like. What songs
| they would've been singing. What what what. The 'veil of tears'
| is perfectly apt. It both blinds me from the blessing I
| personally have to be living yet I'm I'm unaware of how short
| sighted I am. That beyond this veil so much of what I love is
| beyond the awareness of my own being. I hope he and his family
| finds respite.
| rdtsc wrote:
| That is devastating. Beyond words. As a parent had stop reading
| because I could imagine that happening to my son. Eventually I
| went back and continued.
|
| I hope they eventually find some comfort and some peace...
| thetinymite wrote:
| I went to college with Lars. He's a brilliant, wonderful person.
| Allow me to be one more person who doesn't know what to say. I
| hope that's ok.
| johnwheeler wrote:
| Life and its trappings are very precious. I once got slammed on
| here by some woke assholes for saying most people nowadays live
| better than John D. Rockefeller.
|
| It's like Sam Harris says, there are so many people who on their
| best day would choose to be you on your worst.
|
| Value what you have
| btyree wrote:
| I was reading this article and only at the end did it click that
| the author is a close childhood friend of mine, but we have since
| fallen out of touch. Love you, Lars, BT.
| kingforaday wrote:
| This is your first and only comment from your profile that is
| nearly 12 years old. Sorry it has to be a sad one.
| larsiusprime wrote:
| That you Brandon? How you been?
| btyree wrote:
| It is me! I've been good. I've been following and playing
| your games for years, back to the Super Energy Apocalypse
| days. I'll try to find a way to reach out, but my username
| here follows me around the internet.
| larsiusprime wrote:
| I'm lars dot doucet at gmail dot com, ping me anytime!
| morphicpro wrote:
| Give your love away for free everyday. That's all I can say.
| brunohaid wrote:
| Steven Colbert and Anderson Cooper once had a wonderful, deeply
| human conversation about grief and loss, which also touches
| briefly upon Colbert's mom losing two sons and her husband in a
| plane crash:
|
| https://www.youtube.com/watch?v=YB46h1koicQ
|
| May you find similar comfort, one day.
| yard2010 wrote:
| Lars I'm sending you and your family much love
|
| I would hug you guys and never let go
|
| Stay strong and keep your faith
| larsiusprime wrote:
| 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/
| coffeemug wrote:
| <3
| padolsey wrote:
| <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.
| larsiusprime wrote:
| Yes, I have resources and support, thankfully.
| insensible wrote:
| Looks like an Orthodox Christian family? If so I will write
| your baptism names down at church if you are willing to share
| them.
| larsiusprime wrote:
| That's kind of you. You can email me at lars dot doucet at
| gmail dot com
| highwaylights wrote:
| 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.
| dclowd9901 wrote:
| 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.
| fragkakis wrote:
| I am sorry. My thoughts are with you and your family.
| pclmulqdq wrote:
| 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.
| debok wrote:
| 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.
| smeej wrote:
| > 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.
| satisfice wrote:
| What a helpful post!
| ohbleek wrote:
| 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.
| smeej wrote:
| I'm so sorry for your loss, and the added layers of pain
| around how it happened. The thought of trying to put that
| into words that have to be shared publicly hurts my heart
| _for_ you.
|
| There's nothing I can say that will make it better. Just
| know a stranger on the internet is taking a moment to cry
| with your pain.
| collias wrote:
| Stunningly beautiful write up, Lars. You have an amazing gift.
|
| God bless you and your family.
| DeathArrow wrote:
| God bless you and your family!
| Jare wrote:
| 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.
| mckn1ght wrote:
| > 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.
| wholinator2 wrote:
| 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"
| klondike_klive wrote:
| 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!)
| mlrtime wrote:
| 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?
| paradox242 wrote:
| Do you think he has not already turned this question over
| in his mind for many agonizing hours?
| mlrtime wrote:
| 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.
| larsiusprime wrote:
| 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.
| mlrtime wrote:
| 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.
| mckn1ght wrote:
| 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.
| arkey wrote:
| > 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.
| OscarTheGrinch wrote:
| 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.
| totetsu wrote:
| > 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.
| OscarTheGrinch wrote:
| I struggle with it too. Remind yourself that bad feelings
| are like storms, they will soon pass.
| apwell23 wrote:
| 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.
| chefandy wrote:
| 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.
| chefandy wrote:
| 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.
| uwagar wrote:
| if you could watch that voice, maybe it will shut up or u
| can make peace with it?
| prometheus76 wrote:
| 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.
| DiggyJohnson wrote:
| I have joked that this is my "Bottle it up" approach to
| my mental health, which people usually assume is a self-
| deprecating joke, but there's actually a lot of truth in
| it. Being able to control when to mentally address these
| tough situations if a real skill, and is not simply
| ignoring the problem outright. I'm glad you shared this
| experience.
| prometheus76 wrote:
| Yeah it felt like a revelation when someone said "you can
| control your thoughts" basically. I was like, "Really? Is
| it really that easy?" and it takes some practice but yes,
| you don't have to just let your brain run around thinking
| about whatever it wants. You can say "no". It really
| helps me to have a specific prayer I say instead so that
| my mind doesn't just jump to some other dreadful
| scenario.
|
| The other most impactful thing I've done for my anxiety
| was uninstalling all news apps from my phone. I check the
| headlines one time in the morning to satiate my curiosity
| then I don't look at the news at all.
| em-bee wrote:
| 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.
| brightball wrote:
| 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.
| smeej wrote:
| > 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.
| TheRealDunkirk wrote:
| > 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.
| smeej wrote:
| 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.
| xp84 wrote:
| That's a beautiful line. Thank you for sharing it.
| DiggyJohnson wrote:
| 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.
| baconhigh wrote:
| 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
| ziotom78 wrote:
| Thanks so much for having written this. My deepest condolences,
| God bless you and your family.
| NKosmatos wrote:
| 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 "E
| Anthropine Zoe Estin Iera" / "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.
| fasteo wrote:
| >>> 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.
| tharakam wrote:
| 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.
| Tomrn wrote:
| Thanks for sharing your story, God bless you and your family.
| dingdingdang wrote:
| 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.
| chrishare wrote:
| Thank you for sharing. As a new father myself, my heart goes
| out to you and your family.
| amykhar wrote:
| 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.
| Angostura wrote:
| 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.
| swader999 wrote:
| 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.
| pneumic wrote:
| 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.
| EA wrote:
| 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.
| WhackyIdeas wrote:
| He said the article was not about asking for money
| khaledh wrote:
| 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.
| don_neufeld wrote:
| 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
| khaledh wrote:
| 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.
| dopeboy wrote:
| 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.
| mkrishnan wrote:
| God bless you and your family Don.
| aproductguy wrote:
| We love you too.
| ChrisMarshallNY wrote:
| 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.
| spog314 wrote:
| I sent few suggestions to your email leveluplabs@gmail.com. Is
| this the best email to reach you?
| thenerdhead wrote:
| 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.
| aaronsimpson wrote:
| 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.
| dddrh wrote:
| 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.
| larsiusprime wrote:
| Literally nobody knows what to say including me. It's okay
| that it's not okay.
| insane_dreamer wrote:
| 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.
| jnsie wrote:
| Every parent's worst nightmare. Godspeed, Lars.
| egeozcan wrote:
| 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.
| NotYourLawyer wrote:
| 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).
| larsiusprime wrote:
| 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.
| rudasn wrote:
| 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.
| rustyminnow wrote:
| 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.
| lo_zamoyski wrote:
| 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.
| Dweller1622 wrote:
| > 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.
| nineplay wrote:
| > 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.
| wchesley wrote:
| 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.
| ParallelThread wrote:
| 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.
| jcutrell wrote:
| 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.
| nineplay wrote:
| 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.
| JohnnyD10 wrote:
| 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.
| DiggyJohnson wrote:
| 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.
| NateEag wrote:
| 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.
| arethuza wrote:
| 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.
| Kronopath wrote:
| 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.
| TedDoesntTalk wrote:
| 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?
| nyanpasu64 wrote:
| 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
| pelasaco wrote:
| > 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!
| chrisbrandow wrote:
| Thank you for such a vulnerable description of your terrible
| journey right now.
| sandymcmurray wrote:
| 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.
| satisfice wrote:
| 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.
| ryanisnan wrote:
| > 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.
| MandieD wrote:
| 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.
| bironran wrote:
| 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.
| pmarreck wrote:
| 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.
| mise_en_place wrote:
| The cruelest thing of all is that, technically speaking, his son
| is still alive. I'd imagine this to be far more torturous.
|
| I have lost many close family members, but they all lost their
| biological lives. This just seems to be one of the worst
| experiences you could go through.
| larsiusprime wrote:
| People are downvoting you, but yes, his situation is worse than
| death in a sense. In some ways it's a comfort to still have
| what's left of him with me, in other ways it's worse. I
| definitely have a DNR in place for myself. I have complicated
| feelings about... well, everything, which I did my best to
| exorcise in this piece I posted a few days ago:
|
| https://www.fortressofdoors.com/four-magic-words/
| mise_en_place wrote:
| Thank you for sharing. I've found it helps to talk about
| these things. When my own mother died, I didn't immediately
| feel sad. It was a range of emotions; I was really surprised
| at how much I laughed. Not that I found it funny, but
| something within me just seemed to break.
| ljf wrote:
| My father died just before Christmas - and it was similar,
| my wife thought I was coping a little too well. That said
| all I needed was for all the planned 'xmas' things to be
| completed and I was able to give myself the time I needed
| to cry and make peace with the situation. I still go for a
| walk most mornings and cry when I am totally by myself -
| not that I am ashamed of crying, but just that it feels
| more freeing and more open when I am standing alone on a
| beach.
| kayodelycaon wrote:
| This is fairly common. Everyone handles grief differently
| and it doesn't always line up with other peoples
| expectations.
| cjbprime wrote:
| Thanks for writing this piece, I enjoyed it. My sympathies
| for your family's loss.
|
| I feel like the most controversial idea in the story is the
| one where a four-word deontological requirement's truest and
| deepest form turns out to be a kind of consequentialist
| utilitarianism!
| borlanco wrote:
| This reads like Asimov. Thank you!
| davedx wrote:
| Yeah, I also got vibes of my favourite sci fi authors when
| reading it.
| davedx wrote:
| I read Four Magic Words and shared it with some friends.
| Thanks for writing, and I wish you and your family the very
| best.
| Affric wrote:
| When your loved one is a continuing biological entity but you
| will never again experience them as they were... to me it was
| like all the magic left the world and consciousness/humanity
| was revealed to be just an illusion.
|
| And, as Lars has written, there are many multipliers in the
| individual cases. Unfathomable indeed.
| dataf3l wrote:
| Mi mas sentido pesame.
|
| I'm sorry for your loss.
|
| It's sad to hear that you won't be making the game, but it's
| completely understandable, one has to focus on family.
|
| this doesn't mean your career has to be boring, the job is boring
| if we make it boring.
|
| I would respectfully suggest, from my ignorant and disconected
| viewpoint, that I sincerely hope that you at least consider
| making indie games from time to time.
|
| perhaps making games is therapeutic, I do not know this, but it's
| a hunch.
|
| I sincerely hope none of my remarks are considered insensitive,
| please keep in mind we belong in different cultural backgrounds.
| TIPSIO wrote:
| > "Grief, I've learned, is really just love. It's all the love
| you want to give, but cannot. All that unspent love gathers up in
| the corners of your eyes, the lump in your throat, and in that
| hollow part of your chest. Grief is just love with no place to
| go."
|
| Saw that quote I think on HN a while ago.
|
| Grief sucks. It's different than our other emotions. You can do
| all the right things and have everything going for you after, but
| it's still always there and never goes away. Something you truly
| how to live with and not be afraid to face or run from. This
| tragedy is different because in a way is ongoing. I found the
| post extremely inspirational. Best of luck on the new journey.
| Seems like they'll figure it out.
| m0rissette wrote:
| My son passed May 10 2018; I was drunk from May 11 2018 until
| sometime in 2022 with struggles off and on. I'd love to chat
| about the insane level of grief I experienced and maybe help or
| just listen. Come find me if you'd like.
| WiSaGaN wrote:
| I've come to understand that parents who have lost a child
| often face significant challenges in maintaining their
| relationship. Could you offer advice for such parents, both for
| before and after experiencing this tragic event, on how they
| can stay united and prevent further losses in their lives?
| Additionally, are there circumstances where it might be
| healthier for them not to stay together?
| m0rissette wrote:
| Coming up on the 6th anniversary of his death; my wife and I
| are separated and going through a divorce. I'd like to say it
| is all my fault because I am still emotionally unavailable
| but it takes two.
|
| As for advice I think as we all relationships, communication
| is key. I dropped the ball here because honestly the first
| year I only got out of bed to go to the liquor store.
|
| Year two, I drained my retirement to live while staying 24/7
| obliterated and not dealing with what can only be called a
| complete loss of one's identity and self.
|
| I don't think it is healthy for us to stay together because
| she took the loss much easier than I at least from all
| outward appearance.
|
| Years 3-5 was a very introspective and healing time where I
| went through periods of depression and hopelessness.
|
| I'm now in the rediscovering who I am phase because I kind of
| lost that along the way.
|
| So in conclusion, a combination of LSD and therapy(CBT)
| allowed me to start moving forward with life and slowly
| getting out of a never ending cycle of grief.
|
| That probably doesn't answer your question but I think every
| one who has to go through this kind of event is going to
| handle it differently.
| WiSaGaN wrote:
| Thank you for your answer.
| m0rissette wrote:
| I've found after years of trying to escape all that I've
| lost. Talking about it helps the most.
|
| You can see the PTSD and anxiety still has me up at
| 4:16am, I still don't sleep well. I'm still healing and I
| imagine I may never fully heal but I do have hope that
| one day I will be better and have grown immensely through
| the experience but even today I have survivors guilt for
| being at work instead of home.
| stef25 wrote:
| Yup something like 9/10 couples who lose a child end up
| separating and I totally understand
| highwaylights wrote:
| I'm deeply sorry that this happened to you both and, for
| whatever it's worth to you, I'll pray for you and your son
| today.
|
| I couldn't and wouldn't pretend to understand what you're going
| through - I'm just a stranger on the Internet that hopes that
| with time your struggles ease and you're able to find a way
| forward.
|
| God bless you both.
| rand0m4r wrote:
| My 23 year old son passed away in march 2021 - this is exactly
| what i've been living. Stay strong.
| erickhill wrote:
| Halfway down, I can't anymore.
| appplication wrote:
| The Buddhists were right about something. Life is suffering. I
| gotta stop writing here before I get too nihilistic. The posted
| article and some of the stories here are tragic. I wish I had
| something better to say.
| malteof wrote:
| Well, the Buddhists are more optimistic than that! They have
| lots of techniques and ways of thinking to reduce suffering. I
| recommend reading up on their life philosophy, they're far from
| nihilists.
| stef25 wrote:
| Links ?
| bowsamic wrote:
| https://tricycle.org/beginners/
|
| https://www.amazon.de/Buddhas-Words-Anthology-Discourses-
| Tea...
|
| https://suttacentral.net/mn
|
| https://en.wikipedia.org/wiki/Heart_Sutra
|
| https://en.wikipedia.org/wiki/P%C4%81ramit%C4%81
|
| https://www.amazon.de/-/en/Charles-B-Jones/dp/1611808901/
|
| https://www.amazon.com/The-Library-of-Wisdom-and-
| Compassion-...
|
| http://shinranworks.com/
| wegfawefgawefg wrote:
| The absense of the need for optimism is not the same as
| optimism.
| bowsamic wrote:
| The main doctrine of Buddhism is that eternal bliss is
| possible, how is that not optimistic? I'm a Jodo Shinshu
| Pure Land Buddhist and as far as I can tell all Buddhists
| believe in this, it's the third noble truth after all.
|
| To me it seems more optimistic to think that our current
| life is somehow limited and flawed and that a mind and
| experience beyond it is possible (Buddhahood) than to think
| that it's not possible and we are stuck as limited
| suffering beings.
| wegfawefgawefg wrote:
| Bliss via relinquishing desire and agency is different
| from optimism.
| devjab wrote:
| I always found it interesting how many western religions and
| their followers maintain their faith in a "good" God, even in
| the face of terrible personal tragedy. I'm happy that people
| do, since it seems to help them and anything that does that is
| great.
|
| I'm personally more beholden to the Warhammer (yes, out of
| anything...) quote: "it was the moment I began to believe, God
| was real, and He hated us.".
| AnimalMuppet wrote:
| If you accept the Christian view of God, then that God knows
| what it is to lose a son. He knows firsthand what he's
| costing you when he allows it to happen to you.
|
| You may question his wisdom if you want. You may question his
| reasons for allowing it. But at least he's taken his own
| medicine.
| devjab wrote:
| There is also the part where human suffering is our problem
| because someone ate an apple and it gave us free will and
| the responsibility of our own lives. Still doesn't change
| the thousands of children who died in some war zone today,
| or the ones who died from starvation and so on.
|
| If you really watch that sort of thing from the sidelines
| with the power to stop it, then you probably aren't too
| benevolent. Then again, the last time the Christian God
| wanted to solve "our" moral issues He drowned everyone but
| Noah.
|
| Anyway, I'm happy people find comfort in their faith. I
| even sort of wish I could, but I just can't get past the
| watching of all the evil and doing nothing to stop it. You
| wouldn't let your toddlers set fire to each other either,
| well, I hope you wouldn't.
| jongjong wrote:
| > And honestly, at this point crying feels good. Crying isn't
| really when I feel like I'm suffering the most
|
| Although I have not experienced anything even remotely as
| horrible as what the author has, I can still relate to this. I've
| been exposed to enough frustration and injustice over long enough
| periods of time that I can't cry about anything anymore. Last
| time I cried, I must have run out of tears mid-way through
| because I actually started chuckling at my own misfortune. I
| guess maybe my problems are in fact trivial in the grand scheme
| of things.
| krzat wrote:
| Crying is the appropriate response to pain, much much better
| than drinking, getting numb or pretending that everything is
| ok.
|
| The trick is to not feel ashamed or weak for doing this, just
| cry and appreciate the relief it gives.
| xivzgrev wrote:
| I've recently become a father to a son as well, and it's so
| difficult to imagine the magnitude of loss. We've already poured
| so much love into him and received so much, the thought of losing
| him is beyond heartbreaking. Then multiply that by 7 years
| and...like you said, unfathomable.
|
| Your approach to the situation is inspiring. I honestly don't
| know what we'd do in this situation, but I like to think we'd
| find a way to continue loving him even with the understanding
| he'll never come back.
|
| On a much smaller scale, I have an orchid plant my wife gave me,
| and the bloom from the store quickly died out. I've kept watering
| it every week, for the past 3 years. It's bloomed once since,
| interestingly enough when my wife & I agreed to get married, but
| since then nothing. My wife has asked me a few times why I don't
| throw it away, but at this point it's a part of us, until it
| naturally expires.
| Aeolun wrote:
| I feel like that's literally my worst nightmare.
|
| So I'm going to feel sad for a bit, give you my best wishes, and
| then try as hard as possible to forget I ever read this and to
| purge the idea that it could ever happen to me.
|
| It'll be hard enough if it does. No need to worry about it
| beforehand.
| avgDev wrote:
| This is my biggest fear, I wish I could be ignorant about how
| fragile our existence really is. How one moment, one mistake can
| change things forever.
|
| I cannot imagine there is much worse to endure than losing your
| child especially at a young age.
|
| I have much sympathy for the writer and I want to wish him well.
| maxiwer wrote:
| I think what worsens our pain is that we mostly forget that not
| everything is under our control. In fact, maybe nothing's under
| our control.
| chasil wrote:
| What I will try to say is that we are with you, and that your
| sorrow is shared.
|
| We cannot understand your loss, but we are moved by it, and it
| will mark us to a lesser degree than it has marked you, but the
| permanence of the mark will be remembered.
|
| Take from us our thanks for your remembrance, and any solace that
| we might offer, scant as it may be, in your time of trial.
|
| I will remember "Nikolas," the whispered song of what might have
| been.
| dclowd9901 wrote:
| " Grief is just love with no place to go."
|
| God damn. Yes. That's exactly it.
|
| When I miss my brother, it's not because I just felt bad all of a
| sudden. It's because I had a great thought about him or a fond
| memory, and then immediately it's a a gut punch.
| Satsana wrote:
| Gotta live it to understand it. Everyone will go through some
| kind of pain like this, the only difference is _when_.
| ericzawo wrote:
| Lars, thank you for sharing. And you must know that you'll be
| fully reunited with your son again one day. I am humbled by your
| family's grace and strength.
| iand675 wrote:
| I lost my 3 1/2 year old daughter to sudden illness about 10
| months ago. Be gentle to yourself and your family. There will be
| times where you aren't actively feeling the grief, but they pull
| you into theirs or vice versa. There will be times where your
| love and grief for your lost child will make it easy to forget to
| cherish the loved ones in front of you.
|
| As you figure out how to live life from here- may you find a path
| forward that is healthy, loving, and beneficial for you and those
| you care about.
| tibbydudeza wrote:
| The lingering life-death.
|
| We dealt with this when my in-laws were in car accident, and my
| mother-in-law ended up in a coma - one day she was semi-conscious
| and still talking and then she just slipped away after series of
| micro strokes.
|
| We all relieved when she passed - we buried her husband a few
| days before and were in a state of limbo as we waited as there
| was no hope of recovery - they did the DNR.
| gorjusborg wrote:
| The lingering is the part that struck me too. Went through
| similar with my mother and ALS. It was hard witnessing her
| slowly die over months, while also having her witness our
| reactions, fully aware.
|
| It is strange and cruel to have to mourn the loss of someone
| when they are still present.
| ssijak wrote:
| If there are miracles, I wish you one
| bomewish wrote:
| Astonishing. Deeply humbling. I cried so much reading it. It's an
| important piece of writing.
| rrr83 wrote:
| I was depressed today and this flashed right at the top! Sorry
| for your loss and I am sure no words can easy out your pain. You
| have your family with you so this phase will move on. Life is
| unfair for sure but we still got a chance to make it better!
| foooobaba wrote:
| There is pain, and there is real pain. This is real pain. When
| life hits you like this, it's important to just endure, rather
| than escape. Trying to escape the pain can lead to addictions and
| behaviors that bring more problems. Some people are hit with pain
| like this and live a whole life trying to escape it, but never
| do. Best thing is accept, grieve, and continue on. Regardless,
| you will not be the same person, this will change you. Sometimes
| life just sucks, and there is no way of saying it doesn't, only
| time and love can help. However, the sun comes up every morning,
| and there is a sunset every night.
|
| This is for anyone out there suffering some acute trauma like
| losing a loved one, or a chronic trauma like abuse over many
| years. I have experienced both, and it took me over 15 years to
| realize what had happened and to recover. I originally chose
| escapism. I didn't realize it at the time, but that's what it
| was. I was always into something, eventually even substance
| abuse. Ironically, escapism is how I ended learning to code,
| which was an escape for me. However, I also ended up being around
| even worse things and witnessing more death, while living broke
| and stressed out. This dragged me into even more suffering to the
| point of wanting suicide every day, but I just couldn't do it.
| This was a combination of escapism, and being around people with
| the same negativity as me.
|
| Fortunately in time, I found myself, and realized everything that
| had happened, and how life can just be like that. But also how
| beautiful and exciting life can be as well. This would not have
| happened had I not met certain people that showed me what it
| means to love, and to be mentally strong. Also, by reading and
| learning you can find inspiration and love from someone that you
| will never meet in real life. Regardless, we need support of
| strong and positive people around us. We are a social species
| after all. When dealing with death/loss, remember the good times,
| be thankful for the time we had, and leave it at that - easier
| said than done.
|
| The sun will rise tomorrow, and you will too. Take care, friend.
| bowsamic wrote:
| The psychology of it is interesting. Somehow this worst thing in
| the world is bearable, and my granddad is quite ill right now and
| while that's not the same at all, it feels "easy" compared to
| some other struggles in my life, which are objectively less
| painful. And yet...
| SillyUsername wrote:
| I've had a similar situation with a child, and although I won't
| go into details it can take a few years for it to process fully,
| and you come out with a different life perspective.
|
| I can't give a lot of good advice as I've had the full emotional
| spectrum, the world no longer seems real, and at points didn't
| deal with it well. But that's ok. It's part of adjusting.
|
| Please take it easy, you aren't alone, and if it gets too dark,
| sleep, tiredness can make things seem a lot worse. Make sure you
| speak to people continue hobbies, and avoid dwelling on the
| thoughts.
|
| Keep well.
| icehawk wrote:
| > Nikolas has becomes a living altar to his own memory.
|
| While I cannot fault them for this decision, it is also
| antithetical to the decision I'd want made for me.
|
| If that happened to me, I do not not consider that me anymore,
| just some body (and not somebody) that bears a superficial
| resemblance.
| grimblee wrote:
| Hello,
|
| I felt deeply moved by your story.
|
| My first born (and only kid) just birthed with a genetic
| mutation, very random one that may at any point in his life
| manifest in various degree of danger for his life.
|
| I don't know what tomorrow has for me but your story made me
| think about this deep fear of one day losing him.
|
| And at the same time I know 100 years ago we wouldn't even have
| noticed it until too late, at least now we can monitor and try to
| prevent danger...
|
| Courage to you and your wife. I can't fathom but I can feel
| sympathy to your situation.
| protoman3000 wrote:
| I'm sorry for your situation.
|
| Having gone myself as a 5 year old sibling through something like
| this I wish to stress this:
|
| Don't let your other children become chronically mentally ill,
| send them to the psychotherapist and counselor and do that for
| years. You can't imagine the amount of suffering they will have
| untreated. This is not something that you can just outlive and
| your children are dependent on you supporting them by giving them
| support from somebody who actually can support them. The scar of
| this trauma will run many many years, make them extremely
| vulnerable and can render them with a full blown disability.
|
| You can prevent this. Don't let other people who have no idea
| shame you for seeking help for this.
| andy_ppp wrote:
| This interview with Rob Delany about the death of his 2 year old
| is heart breaking. His book is also very good.
| https://www.youtube.com/watch?v=MP7waDOo210
|
| I want to say all the usual cliched things like I'm sorry for
| your loss but it feels like nothing even comes close to being
| helpful. I hope you find a way through.
| givemeethekeys wrote:
| Hi Lars, Maybe what was needed all along for valuation software
| was a game developer's touch.
|
| My greatest satisfaction when it comes to writing software comes
| from making my users happy - especially those users who've felt
| neglected.
|
| Gamers are a spoiled bunch. There are so many good games, and so
| much other great entertainment and music on top of it =).
|
| The inability to travel is something VR will help alleviate. Not
| the same as actually being there, but still, it will get people
| that much closer to it.
| h4l0 wrote:
| I read it all through. Yes, there are no words. But seeing "Sign
| up for more like this." form at the end was so confusing.
| sgu999 wrote:
| > The doctors initially thought he would quickly die after being
| taken off the ventilator, but he has persisted for about a month
| now.
|
| Doctors can think whatever but because most of them will prefer
| legality over morality anyway, they leave everyone to suffer and
| move on to the next patient. Then you're left to care and wait,
| oscillating in-between hoping that your loved one dies soon or
| that some miracle happens. In my case it was someone who had made
| very clear that they didn't want to remain in case of a
| catastrophic event like this.
|
| Having a strong stance on euthanasia without having experienced
| first-hand what it actually means is - in my opinion - just a
| symptom of a clear lack of empathy, dismiss any politician who
| does.
| andrepd wrote:
| Off-topic, but
|
| > I now have one and only one job, which is working on real
| estate mass appraisal valuation technology for the purposes of
| accurately and credibly measuring the value of land separately
| from buildings and improvements. This is the kind of
| straightforward, steady, stable, boring work that I need to
| support my family right now. It also conveniently lines up with
| my niche interests [Georgism and LVT].
|
| Is there a link regarding this? I'd like to know more about this
| project.
| enticeing wrote:
| Looks like this (https://www.valuebase.co/) from further up
| victor106 wrote:
| I am truly sorry for your loss. Pray that you continue to stay
| strong. I went through the same situation about a decade ago with
| a close friend of mine and it's truly the hardest of times.
|
| > Fortunately, we have been able to qualify for public medical
| assistance in this regard and it looks like we are going to be
| financially okay for the time being
|
| I know this is off topic but I want to call out how important
| public medical assistance is. Healthcare costs can truly wreck
| families and anyone who thinks that the government does not have
| a role providing healthcare assistance needs to think again.
| larsiusprime wrote:
| I have been SO Medicaid-pilled by this event
| Narciss wrote:
| Thank you for sharing your story. I remember when I lost my
| father while very young and the lack of it being "hard", while
| being a lot of other things. You verbalized that experience very
| well.
|
| Wish you the best.
| Affric wrote:
| I am finding it hard to find the right words to express this so
| please forgive me if this comes off as insensitive.
|
| That was a very touching piece that gave me a sense of that
| unfathomability Lars wrote of.
| 4death4 wrote:
| I know the author explicitly stated they weren't going to share
| any additional details outside of this piece, but I'm curious as
| to how their child was injured. Like most parents, I fear for the
| safety of my child and want to protect them from the world.
| Hearing about a child injured so severely is terrifying and
| devastating. I have this irrational belief that if I could
| somehow understand and categorize all possible dangers then I
| might have a hope of keeping my daughter safe.
| phalangion wrote:
| It was a cardiac arrest during surgery. Likely nothing
| preventable or predictable. Just tragic
| larsiusprime wrote:
| Exactly this. A routine surgery to deal with a treatable
| congenital condition. One in a million events happen to
| somebody.
| stef25 wrote:
| That quickly becomes helicopter parenting. I've got two young
| kids myself and totally understand your struggle.
| Bologo wrote:
| Peace be with you.
| indru wrote:
| I can relate to this situation. My father contracted COVID in
| December 2021. He was already suffering from dementia, having
| lost his ability to relate things and express himself. From what
| we observed, he was no longer the person we had known for many
| years. After contracting COVID, he became fully silent and
| bedridden for six months. His food was administered through
| pipes, and blood reports were regularly taken to monitor his
| health. In case of any infection, especially urinary, we had to
| take him to the hospital. Throughout this period, he was
| physically present but unresponsive.
|
| I was unsure about what he was feeling--whether he experienced
| pain or had lost his ability to feel it. My mother was not ready
| to accept the reality, continuously supporting him during this
| challenging time. I cannot recollect those days clearly. He
| passed away six months later, but the thoughts of what he went
| through continue to trouble all of us. I still feel the pain.
| Reading this account has made me more thoughtful about his
| situation during those times.
| marvic23 wrote:
| God, I hope he wakes up. Be well!
| KeithBrink wrote:
| Thank you for writing this. They say that you don't know what you
| have until it's gone, but reading experiences like this reminds
| me how precious and fragile life is, so that I can more deeply
| appreciate the time I do have with my loved ones.
| monkeydust wrote:
| Thank you Lars for putting my mundane work issues into
| perspective and help me think about enjoying and appreciating
| what I have and stress (less) about what I don't, though that is
| the human condition. Stay strong.
| robertlagrant wrote:
| The "but if he does not" from that passage is theodicy in a
| nutshell.
| sambeau wrote:
| So beautifully put.
|
| When I lost my son, I found comfort in two thoughts--
| - A big life can be very short - "Why NOT me?"
|
| Grief is an illness that can only be cured by time. Your wounds
| heal over, but never completely fade. You gradually pack it away
| in a little box alongside a few physical things--small clothes,
| toys, photos--and try not to open it too often in case you let it
| all spill out, or the smells to fade. Every now and then, someone
| knocks the box without realising and your grief tumbles onto the
| floor. It can take days to fit it all back in.
| smeej wrote:
| > A big life can be very short.
|
| My nephew was born by emergency c-section after my sister
| experienced sudden cardiac death at age 29, 8 months pregnant.
| They were able to restart his heart, but after six days, he had
| recovered no brain activity, and passed away in the loving arms
| of his dad.
|
| In those six days, that little boy brought peace to every
| person who met him, in the worst situation any of us had ever
| been in, even though he never even took a breath under his own
| power or opened his eyes.
|
| Every year, as the anniversaries of his birth and death come
| around, I spend those days trying to ask myself if I've made
| good use of my time like he did of his.
|
| BIG life. Long impact. Short days.
| ineedasername wrote:
| Based on the title simply can't read this with kids of my own
| that I fear for daily. I have it an upvote because I believe it's
| well deserving of attention but I just... can't... read it
| myself. Whatever the circumstances I am very sorry for what you
| have had to go through.
| javajosh wrote:
| An important post to remind us that most of our trials are of the
| lesser kind.
|
| _> The best metaphor I can give for the daily home hospice care
| of your own seven year old son is a monastic vocation_
|
| His son is _seven_. In hospice care. There are no words, because
| as the author says: it is _unfathomable_. He writes with such
| care and precision and grace. It 's an amazing act of charity he
| does for us all.
| poszlem wrote:
| "For in grief nothing "stays put." One keeps on emerging from a
| phase, but it always recurs. Round and round. Everything repeats.
| Am I going in circles, or dare I hope I am on a spiral?
|
| But if a spiral, am I going up or down it?
|
| How often -- will it be for always? -- how often will the vast
| emptiness astonish me like a complete novelty and make me say, "I
| never realized my loss till this moment"? The same leg is cut off
| time after time." -- C.S. Lewis, A Grief Observed
| pylua wrote:
| I am devastated to read this and it brings tears to my eyes.
|
| The author of the blog post is a strong man. I can't imagine what
| he is going through and I am truly sorry.
| thecatspaw wrote:
| When I lost my father almost exactly a year I go, I was reminded
| of a comment on reddit that helped me a lot. Here it is:
|
| Alright, here goes. I'm old. What that means is that I've
| survived (so far) and a lot of people I've known and loved did
| not. I've lost friends, best friends, acquaintances, co-workers,
| grandparents, mom, relatives, teachers, mentors, students,
| neighbors, and a host of other folks. I have no children, and I
| can't imagine the pain it must be to lose a child. But here's my
| two cents.
|
| I wish I could say you get used to people dying. I never did. I
| don't want to. It tears a hole through me whenever somebody I
| love dies, no matter the circumstances. But I don't want it to
| "not matter". I don't want it to be something that just passes.
| My scars are a testament to the love and the relationship that I
| had for and with that person. And if the scar is deep, so was the
| love. So be it. Scars are a testament to life. Scars are a
| testament that I can love deeply and live deeply and be cut, or
| even gouged, and that I can heal and continue to live and
| continue to love. And the scar tissue is stronger than the
| original flesh ever was. Scars are a testament to life. Scars are
| only ugly to people who can't see.
|
| As for grief, you'll find it comes in waves. When the ship is
| first wrecked, you're drowning, with wreckage all around you.
| Everything floating around you reminds you of the beauty and the
| magnificence of the ship that was, and is no more. And all you
| can do is float. You find some piece of the wreckage and you hang
| on for a while. Maybe it's some physical thing. Maybe it's a
| happy memory or a photograph. Maybe it's a person who is also
| floating. For a while, all you can do is float. Stay alive.
|
| In the beginning, the waves are 100 feet tall and crash over you
| without mercy. They come 10 seconds apart and don't even give you
| time to catch your breath. All you can do is hang on and float.
| After a while, maybe weeks, maybe months, you'll find the waves
| are still 100 feet tall, but they come further apart. When they
| come, they still crash all over you and wipe you out. But in
| between, you can breathe, you can function. You never know what's
| going to trigger the grief. It might be a song, a picture, a
| street intersection, the smell of a cup of coffee. It can be just
| about anything...and the wave comes crashing. But in between
| waves, there is life.
|
| Somewhere down the line, and it's different for everybody, you
| find that the waves are only 80 feet tall. Or 50 feet tall. And
| while they still come, they come further apart. You can see them
| coming. An anniversary, a birthday, or Christmas, or landing at
| O'Hare. You can see it coming, for the most part, and prepare
| yourself. And when it washes over you, you know that somehow you
| will, again, come out the other side. Soaking wet, sputtering,
| still hanging on to some tiny piece of the wreckage, but you'll
| come out.
|
| Take it from an old guy. The waves never stop coming, and somehow
| you don't really want them to. But you learn that you'll survive
| them. And other waves will come. And you'll survive them too. If
| you're lucky, you'll have lots of scars from lots of loves. And
| lots of shipwrecks.
|
| From here:
| https://www.reddit.com/r/GriefSupport/comments/d9685e/grief_...
| imetatroll wrote:
| I lost my first son five years ago. For me it permanently damaged
| - or a least thus far - has damaged my ability to return to a
| state of "normal", leaving me feeling more acutely aware of the
| accumulated emotional wounds that life inflicts while
| simultaneously slipping a veil between living and me. It was
| fast. One morning he was there and that night he was not.
|
| To have ones child trapped in a state between life and death is a
| darkness that I am not sure I could endure. It is good to see
| that his family is so loving of one another and, I suppose, that
| he has such strong faith because ... I just cannot ... that cycle
| of pain that is most acute for months and months after your child
| is gone would spring on you every morning as the panic sets in,
| every time you step in and out of their room, every time you feed
| them, preventing any form of healing whatsoever. For me it would
| in any case. I cannot express it properly. It is a tragedy and I
| think that he may well be in a state of shock that he will not
| even be able to recognize as such for a long time to come.
| spookybones wrote:
| I commend this person for his capacity to write under such duress
| and depression. I have experienced my own tragedies over the
| years and during such times I can only escape.
| jay754 wrote:
| just looking at the comments, I don't think I can even bring
| myself to read the post.
| tsoukase wrote:
| My mom died in October. Just today, I managed to open up memories
| through searching her stuff. The thought of the day was that a
| single kid covers and, literally, can wipe out all the
| generations that precede. Then, I read this post and the second
| thought was that this happens because of the parent that lies
| between.
| 1970-01-01 wrote:
| >What We're In For
|
| A bit too pessimistic if one is also in the 'AI will change our
| future' camp. The possibility of a hospice robot is much greater
| than zero in the next 20 years.
| xpressvideoz wrote:
| Writing such a beautiful article in the midst of such a tragic
| moment proves your talent. I almost feel like I'm committing a
| blasphemy because I'm immensely moved by your article. Huge
| respect.
| 1980phipsi wrote:
| The part that got me was where he talks about his daughters
| helping out with the care.
| smeej wrote:
| I'm adding this comment as a note to anyone who's walking
| alongside people who are grieving, or even is in the middle of a
| grief experience yourself.
|
| Ring theory [0], developed by Susan Silk, was one of the most
| helpful guidelines someone gave me early in my grief journey.
|
| Picture the traumatic event or loss at the center of a set of
| concentric circles. At the very center are the people going
| through it directly. Each step outward represents one step
| removed from the event itself.
|
| Everyone has permission to dump any pain or need or anything onto
| anyone in a larger ring than they're in, but under no
| circumstance should any such things be dumped into a smaller
| circle.
|
| For example, when my sister and my died, her husband/his father
| was in the innermost circle. My mother was in a very slightly
| larger one. My brother and I were a circle out from that,
| followed by her closest friend, his parents, his brother, their
| other friends, etc.
|
| It makes a really big difference not to have to try to deal with
| what other people need to dump when you're dealing with enough to
| be broken yourself.
|
| And when in doubt? The most effective thing you can do in many
| circumstances is show up, stay, and not say a word. Your physical
| presence and willingness to sit silently in the overwhelming
| awkwardness speaks volumes. It tells the person you love that
| they aren't alone, even when being with them is really hard.
|
| [0] https://en.m.wikipedia.org/wiki/Ring_theory_(psychology)
| kohanz wrote:
| I'm truly sorry for this event, OP. As a father, I cannot fathom
| how this feels, but I have had a taste of it when my young
| brother-in-law was in a catastrophic car accident. I hesitate to
| share this story, because it may again bring hope, and I agree
| that hope is pain in these situations. I do not know the details
| of your situation and how confident the medical team is in their
| prognosis. If you are certain in their judgment, then please do
| not read the rest, because it is hopeful. I share it here, if not
| for you, then for others. Apologies again if this is
| overstepping. I will delete it if this is out of bounds.
|
| ----
|
| My BIL was in a head-on collision with a semi (he was in a Honda
| Civic) on a snowy day when he was in his early 20s. He was on his
| way to go snowboarding.
|
| My wife, his only sibling, got the news immediately and we both
| got on a 5 hr flight to the hospital where he was. My wife was
| heavily pregnant.
|
| While he was initially conscious after the accident, soon an
| embolism formed and resulted in a blockage in his brain. As I
| understand it, the embolism actually should have ended up in his
| lungs and killed him, but due to an unknown hole in his heart, it
| ended up in his brain and instead caused a severe brain injury.
| He lost consciousness and slipped into a coma. His physical body
| was battered (many broken bones) and now he also had no brain
| function. Non-responsive.
|
| While grieving the accident, and his loss, we met with several
| Drs. at the hospital and their prognosis was bleak. Even on the
| slim chance that he would survive, he would not ever walk, or
| talk, or do much of anything ever again. I also remember the dire
| moment when the brain MRI came back and it looked like one big
| cloud of fog. I had spent a career at that time in medical
| imaging and while I was on the engineering side, I knew this was
| a horrible sign and the doctors confirmed that. One doctor matter
| of factly and without mincing words told us we'd be best off
| pulling the plug soon, so that his organs could be used. We could
| not bring ourselves to make that decision at the time (I often
| wish I could remember that Doctor's name to update him on what
| has transpired since, but alas that whole period of time was a
| grief-filled haze).
|
| He stayed in that coma for 5 months, slowly showing signs of
| responsiveness. Eye movement, for example. Eventually, he "woke"
| up, but could not speak, still not walking or even able to sit
| up. Over years of intense therapy and effort by him and his team
| (and my wife supporting all of the above), he slowly improved.
| All of us spent so much time talking to him, while getting little
| to no response back. Eventually, you could get to the point where
| you told a joke and he would muster a smile, maybe with his eyes
| at first, and then with his mouth. I still remember the day the
| hospital called and the nurse put him on the phone to my wife
| with shock to say that he had said a word and he said "I love
| you" to his sister. Mind you, it was very hard to understand him
| (and he still is a bit difficult to understand, to this day).
|
| I don't want to write a novel about this (I could easily), but
| his progression continued, over years and years. Physical
| therapy, speech therapy, occupational therapy and more. Today, a
| decade later, he can walk, talk, play video games, go to the
| movies, he does activities like swimming and skiing with
| assistance from equipment and aides. He lives in an apartment
| that has care aides around when he needs them, but can do many
| things for himself. He has the mentality of roughly a 10 year
| old, in some ways, but he has memories of his life before the
| accident and maintains his old sense of humour and love for his
| family. He is still with us and big pieces of the "old" him are
| there. He is a wonderful uncle to our children, the oldest of
| which was weeks away from being born when his Uncle's life
| changed forever.
| devdiary wrote:
| Thank you for writing this
| thehias wrote:
| It is a shame that medical bills can force you to change your way
| of life in the USA. In Germany or similiar countries with
| universal healthcare your cost would have been alomost 0$/EUR.
| kgool71 wrote:
| I lost my son three years ago last month and this resonates with
| me in ways I cannot imagine. I never expected to find this in
| this place today but I am both glad and sad that I did.
| "Unfathomable" is so painfully accurate.
| pcj-github wrote:
| What a gifted writer.
|
| A very close friend of mine's brother was bicyling back home
| after his first year of college and was struck by a drunk driver,
| he was left in a vegetative state for about 8 years before
| finally passing from urinary complications. The father, also a
| creative person, wrote "In the Line of Fire", if you ever saw
| that film with Clint Eastwood. They said it was the worst and
| best thing to ever happen to them; I still don't understand what
| it means.
| zengid wrote:
| When you become a parent, it's like being reincarnated but your
| old body is still there. You have two bodies now. Eventually you
| grow strong enough to withstand the new flood of sensations and
| emotions, but the majority of your energies goes into the new
| body. You have so much more to protect, but ultimately you have
| less you can control. You are along for the ride.
|
| My deepest condolences to the author.
| wojo1206 wrote:
| My son has been born with brain damage due to chromosomal
| abnormalities. He is just 2 years old. He can't walk, talk, he is
| feed through tube and doesn't seem to be interested with
| surrounding very much. And, he is scheduled medical procedure to
| treat another congenital condition in couple weeks. I understand
| your pain and suffering. I understand how much you and your
| family have changed over this difficult period. We also got
| healthy 5 year old daughter. Devastation, strangeness, changes
| and hardship that is more hard that anything.
|
| I am glad that this forum raises human suffering issues and
| topics beyond bits and bytes. Before my son was born I was so
| unaware of how much support society has built to help cope and
| threat complex medical issues. I had no idea we got: feeding
| therapists, swallow studies, sleep studies, endocrinologists and
| literally hundreds specialties in health industry.
|
| Gob Bless You and Your Family
| stephenhumphrey wrote:
| I will make some personal comments to Lars privately, but let me
| say this, publicly:
|
| I read between 10 and 100 articles or posts linked from HN every
| single day, and I have for years. As you can see for yourselves,
| I almost never comment. At this late stage in my life and career,
| it just seems fruitless to add my lone voice to the world of
| mostly-vapid, interconnected noise.
|
| But Lar's three poignant and vulnerable essays, as well as his
| comments on this post, seem to have brought out nearly
| universally the best people I've yet to see on HN or even on the
| larger net.
|
| Wow. Most of you commenting are demonstrably fine people, and
| without calling out any in particular, I must decloak for this
| brief moment to say thank you for being such thoughtful,
| expressive, kind people.
|
| I certainly hope some of your best comments resonate with and
| help Lars. However, even if not, your wisdom and humanity have
| helped me today -- helped me process my own life and my still-
| too-raw tragedies.
|
| Well done, HN "friends." Keep up your "good works." May we meet
| again, in real life or beyond.
| gwbas1c wrote:
| > My son is alive, but all of his higher mental functions have
| been wiped out. He still sleeps and wakes, breathes under his own
| power, and responds to certain stimuli, but he makes no
| intentional movements. He moves reflexively, and occasionally
| smiles and even laughs, but he can't speak and it's not clear
| what degree of awareness he still has of his situation, if any.
|
| I remember when my mom got to that state when she was dying from
| cancer. I looked at my wife and told her that, when I'm at that
| state, feed me pain killers to move things along. (I didn't do
| that with my mom because she expressly told me that she didn't
| want euthanasia.)
|
| But, when someone is in that state, is speeding along the
| inevitable really euthanasia? My mom was find with painkillers,
| even if they shortened her life by a few hours. I understand that
| the living need more time. (I wish I had more time with my mom.)
| gwbennett wrote:
| Thank you for sharing your unfathomable journey. It may sound
| cliche, but my thoughts and prayers will be with you, your son,
| and your family!
| hasoleju wrote:
| I read the article and browsed a lot of comments. I did not
| expect to read such an article when I opened the site today.
|
| The article and a lot of comments really touched me. I gained a
| completely new perspective. Reading about the feeling of loosing
| a child automatically sparks the imagination about my one
| feelings about such a tragedy. Only thinking about it is somehow
| horrible. It really puts every other daily concern about the
| children and every dispute one might have with them into
| perspective.
|
| Thanks everyone for sharing your thoughts and stories. I am
| moved.
| royaltjames wrote:
| How utterly soulcrushing. Reading this I realized at once that
| both I want to be loving unconditionally to my kids like you and
| also my parents would never do this for me.
|
| You and your family sound like beautiful people, and I hope you
| can be kind to yourself no matter what happens.
|
| When timing is more appropriate, I'm curious to hear more in-
| depth about how to cling relentlessly to joy.
| keeganpoppen wrote:
| wow, that was very powerful, and i didnt make it very far before
| being completely overwhelmed with emotion. but i am very grateful
| for this insight into human nature that can only come from the
| extremes of human experience.
| zirgs wrote:
| Isn't Michael Schumacher also in a similar condition for more
| than a decade now?
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