Hi. My son, 14, has a serious neuromuscular disease that may end his life early, or not, or...we just never know.
I've resuscitated him myself twice. My ex-husband has done it once. My son has conked out due to an insufficient airway managed by an untrained school employee most recently, and my reaction was... inappropriate. I arrived at school and my son was on the floor, luckily responsive (no damage, apparently, thank God or whoever/whatever is in charge of these things).
I was unable to feel anything once I saw he was okay. I was called while I was at home and the panic I felt... it threw me back to another time my son was ill, double pneumonia, not expected to live due to his very low lung capacity, and my ex called me just to give me an update but he couldn't hear me saying hello, then the line went dead and I thought, "That's it, my son is dead." I fell to the floor. Well, this time I didn't fall to the floor physically but emotionally, something in me finally broke. I feel nothing.
This has happened so many times now, I am numb.
I'm tired. I'm sick of flashbacks coming out of nowhere, usually when I'm trying to go to sleep. I had a lot of sleep disturbance for a while, and my son wakes me at night as well. Since I've been divorced, I share custody so at least I get a week of recovery time.
There is no real support. The psychologist at the children's hospital where my son is followed sticks her head in the door, asks, "Everything ok?" and before I get the chance to say "NO!", she's gone again. I'm sure there are worse things going on than what's happening to my son. He's alive, not in crisis, but surely... I mean, we do not have normal lives. How could a professional think we're all just hunky dory? Just getting by, living in trauma every winter, or on random occasions?
I'm so angry. So sad. I have an enormous amount of stress and I try to keep all the plates in the air, spinning, and I can't do it all the time. I'm quitting the job I have at the moment because it's too much stress. I'll be ok financially, but I just want a job where I can hide and not be beholden to anyone, no stress, I can't take it anymore.
I've resuscitated him myself twice. My ex-husband has done it once. My son has conked out due to an insufficient airway managed by an untrained school employee most recently, and my reaction was... inappropriate. I arrived at school and my son was on the floor, luckily responsive (no damage, apparently, thank God or whoever/whatever is in charge of these things).
I was unable to feel anything once I saw he was okay. I was called while I was at home and the panic I felt... it threw me back to another time my son was ill, double pneumonia, not expected to live due to his very low lung capacity, and my ex called me just to give me an update but he couldn't hear me saying hello, then the line went dead and I thought, "That's it, my son is dead." I fell to the floor. Well, this time I didn't fall to the floor physically but emotionally, something in me finally broke. I feel nothing.
This has happened so many times now, I am numb.
I'm tired. I'm sick of flashbacks coming out of nowhere, usually when I'm trying to go to sleep. I had a lot of sleep disturbance for a while, and my son wakes me at night as well. Since I've been divorced, I share custody so at least I get a week of recovery time.
There is no real support. The psychologist at the children's hospital where my son is followed sticks her head in the door, asks, "Everything ok?" and before I get the chance to say "NO!", she's gone again. I'm sure there are worse things going on than what's happening to my son. He's alive, not in crisis, but surely... I mean, we do not have normal lives. How could a professional think we're all just hunky dory? Just getting by, living in trauma every winter, or on random occasions?
I'm so angry. So sad. I have an enormous amount of stress and I try to keep all the plates in the air, spinning, and I can't do it all the time. I'm quitting the job I have at the moment because it's too much stress. I'll be ok financially, but I just want a job where I can hide and not be beholden to anyone, no stress, I can't take it anymore.