alizesmom
Dreaming of Disney.
- Joined
- Jun 17, 2007
I'm feeling very sorry for myself. There are so many times I want to scream “I have it worse than most people “. Not true, of course, but it sure feels that way. After all, I have a roof over my head, food to eat and I can afford Disney.
On the negative side, I’m married to a newly recovering alcoholic who still is emotionally labile. We’ve been married almost 40 years. We have had 8 children, 4 birth and 4 adopted. Our adopted children have all been medically fragile and we lost one son at age 6 and another son at age 9.
Our 11 yr old son was a shaken baby and functions as a very young infant. He is total care, blind, has seizures and recently started having adrenal insufficiency when sick. He also has a tracheotomy and uses a ventilator at night. Our 12 yr old daughter has an undiscovered genetic problem with multiple medical issues. She also uses a ventilator at night. Neither child can eat by mouth.
The worst is our daughter’s autism which is most often characterized by punching herself in the face and/or aggressive behavior. We have been punched, pinched, kicked and head butted not to mention a lot of hair pulling. She also asks the same thing over and over (using some rudimentary sign language) and this can go on for hours. She seems to find sleep to be optional despite medication. Recently she went 4 days without sleep.
We’re supposed to have nurses at night so we can sleep but in the last 6 months staffing has been poor and we have to stay up.
In the pst few years one granddaughter was diagnosed with leukemia and her little brother was diagnosed with juvenile diabetes. I’ve been recently diagnosed with arthritis.
I’m tired, I’ve ended up isolated as family and friends feel unable to cope with our continued drama and I’m sick of answering the question “how are you?” With a smile and the word fine.
Thanks for listening to my complaining.
On the negative side, I’m married to a newly recovering alcoholic who still is emotionally labile. We’ve been married almost 40 years. We have had 8 children, 4 birth and 4 adopted. Our adopted children have all been medically fragile and we lost one son at age 6 and another son at age 9.
Our 11 yr old son was a shaken baby and functions as a very young infant. He is total care, blind, has seizures and recently started having adrenal insufficiency when sick. He also has a tracheotomy and uses a ventilator at night. Our 12 yr old daughter has an undiscovered genetic problem with multiple medical issues. She also uses a ventilator at night. Neither child can eat by mouth.
The worst is our daughter’s autism which is most often characterized by punching herself in the face and/or aggressive behavior. We have been punched, pinched, kicked and head butted not to mention a lot of hair pulling. She also asks the same thing over and over (using some rudimentary sign language) and this can go on for hours. She seems to find sleep to be optional despite medication. Recently she went 4 days without sleep.
We’re supposed to have nurses at night so we can sleep but in the last 6 months staffing has been poor and we have to stay up.
In the pst few years one granddaughter was diagnosed with leukemia and her little brother was diagnosed with juvenile diabetes. I’ve been recently diagnosed with arthritis.
I’m tired, I’ve ended up isolated as family and friends feel unable to cope with our continued drama and I’m sick of answering the question “how are you?” With a smile and the word fine.
Thanks for listening to my complaining.
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