We are lucky

my wife has a friend who’s daughter has chronic chrones disease and other things, she is very ill. she has had it all her life, she suffers terribly it is very sad…she is 21 now.
a week ago she was in hospital on a ventilator, her body had taken a downward spiral…( this has happened many times ).
she does not have or has ever had a normal life…she is on disability.
she has tried to work on numerous occasoins, but then got very ill.
so we are lucky…there are worse fates.
take care


At my kid sis’s pool there are some kids from the children’s hospital who come for swim lessons and physical therapy and I’ve meet some amazing kids who have it so much worse then I do. There are a few with mental illness on top of physical illness.

My “self-pity” faded quickly when I started seeing these kids. One little girl I often see with M.S. on top of Autism with other SZ like symptoms… only 8. She’s stronger then I’ll ever be.


My older sister had spina bifida. She was paralyzed from the waist down, and used leg braces and a wheelchair. She had many surgeries during her brief life, and used to get blisters really easily. She died when she was nine and I was seven. That was devastating to me. I’ve often wondered what would have happened to her had she lived into adulthood. How could she drive a car, for example. Maybe there are specially made cars, where you can drive with only your hands, I don’t know. She wouldn’t have been able to get married. I was jealous of her when we were growing up, because of all the extra attention she got from everyone. But I didn’t really realize then how tough her life was, and would have been had she grown to adulthood. People are sympathetic to cute handicapped kids, but not so much adults. I’ve also been jealous of her because she died so early. I’ve often wished that I could have died early, so as to spare me from all of my suffering, including my grief over the fact that she died. We were best friends.

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i am so sorry you lost your sister that is very sad .to be best friends and to lose them i can’t even imagine what that would be like.
but i feel people come in to our lives for a reason even if it is for only a brief time.
i have heard it said that children that leave us early, are old souls who teach us valuable lessons, such as love and strength.
take care

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We do have it lucky. With the correct treatment many of us can have a pretty good quality of life.


Thank you for your compassion @darksith. That makes sense, what you said about children who leave us early being old souls who teach us valuable lessons. She did have a lot of love and strength.