Institutionalization: "Isn't there some place you could put her?"
Without a doubt, the worst thing anyone has ever said to me concerning my special needs daughter is, "Isn't there some place you could put her so you can have a better, more normal life?"
Isn't that just what every mother of a child with disabilities wants to hear?
Now, don't get me wrong. I am most definitely not judging anyone who has made the heart wrenching decision to place their disabled loved one into a residential care facility. I am certain that you did not come to that decision lightly or out of selfishness. Sometimes, for what ever reason, there is just no other option and sometimes that is what our loved one wishes.
If I am to be totally honest, it's not like the thought has never crossed my mind. Sadly, my daughter has been watching all her brothers and sisters one by one grow up, go to college, move out into their own apartments, get married, and begin their own families. Perhaps she too will one day want to move out into her own (supervised) place, but that will be her choice.
Someday my husband and I will grow old and frail and then we will die. Then our daughter will need a safe, supervised environment in which to live where others will take over caring for her needs. But every day I pray that my body will stay strong enough to live just one more day than my daughter so that she will never need to live some place else.
What my ears really hear when someone utters these four simple words. "Put her some place" is someone telling me to get rid of my difficult kid, throw her out like the trash, and abandon her because she happened to have the misfortune of getting brain cancer and a brain injury. This has negatively affected her behavior and is, according to you, preventing me from having the better, more normal life that I deserve.
You want me to throw away my sweet, precious, fragile, delicate, beautiful, and loved beyond belief daughter, the very same daughter whose life that not too long ago we were all praying for to be spared, because sometimes she can be difficult, annoying, aggressive, and violent and well- we all know that this is downright inconvenient!
My life has been so intimately intertwined with my daughter's that I sometimes wonder if we could actually live without each other! We sort of have a symbiotic relationship! At this point I really don't know how I would survive without my life being consumed by the every day tasks of caring for her needs and ensuring that she's safe, happy, and healthy. I think I would probably lay down and die of a broken heart if she were not here for me to take care of anymore.
If my special needs daughter lived somewhere else my life would not be better. I would be consumed with grief and guilt if I "put her some place." I would constantly worry and wonder if she was safe and happy and if I had made the right decision. I would forever wonder if she felt abandoned by me. The worrying and wondering would be agonizing for me. It would consume my every moment.
Putting my daughter some place would not make my life better. Putting my daughter some place would destroy my life!