Help for today & Hope for tomorrow
If only someone could understand...
I'm in such a unique situation that I don't even consider therapists or pills. I'm stuck in my life with no way out...
My son was born prematurely at 25 and a half weeks. He has very poor lungs and spent the first 13 months in the ICU where he was never without myself or his mother, only to die during his discharge and be revived, but not quite the same. He's still There but there was significant brain damage, spending another 5 months in the ICU waiting for him to recover and now only able to see him when visiting his rehab facility where he will be for the rest of his life.
Because of where he is being rehabilitated we had to move to be close to him, but as a result the uproot has taken us away from friends and family. It's. So. Isolating.
I spend my days wondering if I'm being selfish keeping him here with us or if he earned his right to be here by staying alive and fighting this long. When born they called him terminal and have him no more than 2 years to live. I'm terrified every time the phone rings that it'll be a doctor calling with bad news.
I love my son. I cherish him. But I can't talk to my wife too much because I don't want to put thoughts of selfishness in her head, I don't want to end my son, nor do I want a life of thinking I opted to do it. We have no friends, we've watched our family fade away, surprisingly a child in a bed can even get stale for blood as well as friends when there isn't tons of progress.
My wife and I can't really go away because vacations put us too far away. For almost 2 years we've spent every day with him at his bedside. We've tried all kinds of things to distract us from our lives, smoking weed, having threesomes, whatever we could think of to try and regain the feeing of being Alive. Feeling something besides blameless anger and frustration. Nothing truly helps. We still feel the absence of our living child everytime we are in our apartment away from him. He is the most precious and beautiful baby with these big fat cheeks.
Maybe I just needed to vent, doesn't really help. But nobody understands, and I just can't keep it bottled up anymore.
My son was born prematurely at 25 and a half weeks. He has very poor lungs and spent the first 13 months in the ICU where he was never without myself or his mother, only to die during his discharge and be revived, but not quite the same. He's still There but there was significant brain damage, spending another 5 months in the ICU waiting for him to recover and now only able to see him when visiting his rehab facility where he will be for the rest of his life.
Because of where he is being rehabilitated we had to move to be close to him, but as a result the uproot has taken us away from friends and family. It's. So. Isolating.
I spend my days wondering if I'm being selfish keeping him here with us or if he earned his right to be here by staying alive and fighting this long. When born they called him terminal and have him no more than 2 years to live. I'm terrified every time the phone rings that it'll be a doctor calling with bad news.
I love my son. I cherish him. But I can't talk to my wife too much because I don't want to put thoughts of selfishness in her head, I don't want to end my son, nor do I want a life of thinking I opted to do it. We have no friends, we've watched our family fade away, surprisingly a child in a bed can even get stale for blood as well as friends when there isn't tons of progress.
My wife and I can't really go away because vacations put us too far away. For almost 2 years we've spent every day with him at his bedside. We've tried all kinds of things to distract us from our lives, smoking weed, having threesomes, whatever we could think of to try and regain the feeing of being Alive. Feeling something besides blameless anger and frustration. Nothing truly helps. We still feel the absence of our living child everytime we are in our apartment away from him. He is the most precious and beautiful baby with these big fat cheeks.
Maybe I just needed to vent, doesn't really help. But nobody understands, and I just can't keep it bottled up anymore.
Replies to This Discussion
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Permalink Reply by Judy Davidson on
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Thank you for sharing your story, James. My communication is key to grief recovery. I am so sorry about what you and your wife are going through regarding your baby boy. I wish I could give you a hug. you would have every right to be mad at God, if you believe in Him. After the losses I went through I have found strength and comfort from Him and reading the bible. I hope yuh can find a local support group. You may not realize it now, but perhaps someday some good can come out of your experience.
Warmly,
Judy
Founding member
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Permalink Reply by James Kreisel on
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Thank you for the kind words and the sentiment, I hope in time to find acceptance or possibly even closure to the situation. Going to work and not showing it, then coming home and not showing it, it's really challenging to not reduce to tears from words. I'm jealous and angry at every happy parent but not contemptuous, I don't wish my situation on everyone. It's just tough, every days tough.
I don't liken myself to the people on here, like yourself, who've experienced one (or several) permanent loss(es), but this life altering tragedy has us as lost and confused as anyone. While I doubt we'll turn to religion I'm sure there's some distraction out there, just haven't found it yet.
But thank you again for reading and commenting, means more than you might think.
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James, I cannot say that I understand because I have never experienced what you are going through. I can tell you this. I have been a peditric home health nurse for 15 years. I have taken care of so many children, some like yours. You are not the only parent to have ever felt these feelings. There is nothing more difficult than having to decide what is best for you child. If you have specific questions or concerns I would be more than happy to try to answer for you. I can be reached through private messaging if you would like.
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