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Losing my son

fortressofdoors.com

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Re: Losing my son

#341

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 a…

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.

Re: Losing my son

#342

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 a…

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?

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

Re: Losing my son

#343
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.

Re: Losing my son

#344

Earlier quoted context omitted.

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 e…

> Find some things in your life to be grateful for and dwell on them, it is impossible to feel sorrow and gratitude at the same time. Any advice on how to do this one. Recently I have been Noticing how no matter how many Good things I do in a year once they’re over they don’t really bring positive feelings the same way that the bad things pop up and make them selves dwelled upon.

I'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.

Re: Losing my son

#346
post #299
post #114

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What you posted is not only a personal attack but a particularly shameful one. That violates the spirit of this site, especially the first comment guideline, which is first because it is the most important: " Be kind. " ( https://news.ycombinator.com/newsguidelines.html ). To accost somebody experiencing devastating personal loss with a trolley argument, while the person is in shock and grief and barely beginning to…

[flagged]

Re: Losing my son

#347

Earlier quoted context omitted.

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 tremendo…

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

God bless you and your family Don.

Re: Losing my son

#348

Earlier quoted context omitted.

I think you forget the fact that his son has 0 ability for self-preservance. In some cases, we may make things that have no chance to exist on their own, persist, but in this case, what does it serve, but our own selfishness?

Every human being is born with zero ability for self-preservation...

And we help them out for their own sake, so that they can live a life of their own eventually.

Re: Losing my son

#349

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 a…

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.

Re: Losing my son

#350

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.

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.

Around the same timeframe and same outcome. Stay strong. I know exactly how you feel.
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