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Losing my son

fortressofdoors.com

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Re: Losing my son

#281

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 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.

Re: Losing my son

#282

[flagged]

As an athiest myself, is this really the thread to be attacking people on? OP meant what they said kindly and with the intent of helping based on their own world view. I have no issue respecting that and the intent it was made in, why do you?

Is a thread about losing a child really the correct forum to be attacking someone on about faith especially when the original blog post is from someone of faith?

I am not attacking you, just urging you to be aware of your surroundings. I will not respond to any further comments in this thread as I don't want to detract from what its really about.

I wish you well.

Re: Losing my son

#283
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.

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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.

Re: Losing my son

#285

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 problem…

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

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Re: Losing my son

#286

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 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.

Re: Losing my son

#287
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$/€.

Re: Losing my son

#288

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…

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.

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