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Losing my son

fortressofdoors.com

311–320 of 434 posts

Re: Losing my son

#311
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

Re: Losing my son

#312
post #193

Earlier quoted context omitted.

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.”.

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.

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.

Re: Losing my son

#313

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…

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.

Re: Losing my son

#314
post #114

[flagged]

Seconded. For reference, I have experience with this kind of scenario first hand (helping care, and living with, somebody with dementia combined with complete immobility and many other things making the quality of life for absolutely everybody involved worse). I hope that with time we become more comfortable with euthanasia, most of us in the scenario found it to be the right choice, but society goes against it.

I also have first-hand experience with this scenario (shared here: https://news.ycombinator.com/item?id=39043885) and if we had followed that line of thinking we would have unnecessarily lost a valuable life. It turns out that, just like our judges and juries convict innocent people in our justice system, our doctors can give terminal or non-improving prognoses to people who will, to a meaningful extent, recover.

Re: Losing my son

#315

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…

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…

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.

Re: Losing my son

#316

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…

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.

Re: Losing my son

#317
post #265
post #101

Earlier quoted context omitted.

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…

> 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…

What a helpful post!

Re: Losing my son

#318
post #265
post #101

Earlier quoted context omitted.

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…

> 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…

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.

Re: Losing my son

#319

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…

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 an…

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.

Re: Losing my son

#320

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 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.

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