My son had Zellweger's too. He had the most severe form of it. He made it to 7 months. Longer than predicted. I like to think it was because of my family making him happy.
Even with all the feeding tubes and all the work taking care of him. I would have chose to have him stay with us like that forever. He was such a source of joy and love in our lives. It's hard to explain, but he was warmth.
A few times in the months before he stopped breathing a few times. A really terrifying experience. Once I thought he had died, he didn't breathe for close to two minutes. I had almost given up when he suddenly took a big deep breath. The same thing repeated a few times every week or so until finally he didn't breathe anymore. I'm just glad he didn't die in his sleep. He died in his mother's arms, my whole family there.
I spent every moment I could with him and I loved him so much. My parents helped so much too. My Dad spent so much time cuddling with him on the couch. My Dad was terminally ill for years but had always been so stubborn that he barely seemed sick. After my son died his health declined fast and he died six months later.
And it hasn't been easy since my son died either. My wife and I almost split a few times. Somehow we're still together, but we're making it work. The sad thing is is, or one of the sad things is she blames herself for his death. It doesn't make sense but there's no talking her out of it. No matter how many times you explain how the genes work and how it's a random unlucky coincidence that we both had the gene. It doesn't matter. In her mind it's her fault that he died and I think she'll always believe that.
Anyways, just a part of my story that I wanted to share. He'll have been two this December I can't believe it. I'm crying typing this. I don't really have a question. I just felt like sharing.
rahgots229 karma
My son had Zellweger's too. He had the most severe form of it. He made it to 7 months. Longer than predicted. I like to think it was because of my family making him happy.
Even with all the feeding tubes and all the work taking care of him. I would have chose to have him stay with us like that forever. He was such a source of joy and love in our lives. It's hard to explain, but he was warmth.
A few times in the months before he stopped breathing a few times. A really terrifying experience. Once I thought he had died, he didn't breathe for close to two minutes. I had almost given up when he suddenly took a big deep breath. The same thing repeated a few times every week or so until finally he didn't breathe anymore. I'm just glad he didn't die in his sleep. He died in his mother's arms, my whole family there.
I spent every moment I could with him and I loved him so much. My parents helped so much too. My Dad spent so much time cuddling with him on the couch. My Dad was terminally ill for years but had always been so stubborn that he barely seemed sick. After my son died his health declined fast and he died six months later.
And it hasn't been easy since my son died either. My wife and I almost split a few times. Somehow we're still together, but we're making it work. The sad thing is is, or one of the sad things is she blames herself for his death. It doesn't make sense but there's no talking her out of it. No matter how many times you explain how the genes work and how it's a random unlucky coincidence that we both had the gene. It doesn't matter. In her mind it's her fault that he died and I think she'll always believe that.
Anyways, just a part of my story that I wanted to share. He'll have been two this December I can't believe it. I'm crying typing this. I don't really have a question. I just felt like sharing.
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