All this time I have been told over and over again: "Put her away." "Put her in a home; she's much better off there where others can take care of her." "She's much too disabled to even comprehend anything; your family doesn't deserve this heartache."
Well, most people might do that, but I am NOT like most people. I am a MOTHER, and Jacqueline (Jacki) is my daughter. She deserves to be home; she gets much better care here than if I were to leave her in the care of complete strangers. And she's much healthier too, besides.
Jacki was born 13 years ago. Unfortunately, my pregnancy was problematic. Jacki was forced to be delivered several months early; it was apparent at the time of her birth that something was seriously wrong. She wasn't responding well to tests and doctors later confirmed the worst: Jacki was born with significant brain damage. She would probably be severely disabled for the rest of her life.
It was a very hard time, but I eventually got over my grief. While I am still sad that Jacki has never known a normal childhood, I am still her mother and Jacki is still my child. I refuse to give her up: I have come to love her so much!
At the age of 13, Jacki is unable to walk, talk, feed herself (she is fed by way of a tube surgically implnted into her belly; I "feed" her five times a day by pouring liquid nutritional suppliments into this tube; she gets her medications the same way), and is not toilet-trained (she wears adult-sized diapers). She can see and hear but not do much of anything else.
Jacki will never know what it is to go to school, go on a date, experience her first kiss, have a boyfriend, go to college, drive a car, get married, or start a family. She is just too disabled to be able to function normally. Jacki will always need the care and attention from others; I am her primary caregiver (and I wouldn't have it any other way!).
Besides Jacki, I also have a son, Donald (Donnie), who is 9. He is a wonderful "big" brother to his sister, although, in truth, she is the "older" child. Donnie has become her fiercest supporter and will fight anybody if they even make one unkind comment about her or stare at her. He loves helping me out with her diaper changes, her bath time, and feeding her; he loves singing to her and reading to her. Donnie is Jacki's best friend in addition to being her "big" brother.
The love they have for each other is heartwarming to see, not only by us, but by others.
I wish more people could be as accepting of my special daughter as Donnie (and the rest of us) are! The world would certainly be a much better place if they were!
Well, it is time to give Jacki her 4:00 medications and then get her "supper" ready, so I'd best go. I will write in here again another time with another update; this won't be the last you will have heard from me! God bless and take care!
~Melanie Doplowitz, Peoria, Illinois.
