My younger sister is a quadriplegic and has cerebral palsy. She was born with this condition, although, my parents believe that it was caused by the doctors and hospital during the birth process. The doctors needed to help Dee out with forceps and Mom has always felt that this is what caused her injury. They even got a settlement from them to this effect. My parents knew right away that Dee was going to be different. She has always been a glowing spirit and the light of my life. She is just one of those people who you know understands the world, even though she can't really express it. It is difficult to explain unless you looked into her eyes, then I know you would see it too.
It is hard to believe that my parents lived a relatively normal existence before Dee, as all of my memories of growing up are all around Dee. She grew up in the home with my parents, my older sister and me. We all helped with her care and mom did most of the work. I think my Dad loved Dee; he just wasn't the caregiver type. Mom lifted, bathed, pushed, played with and changed my sister. She always says that Dee has a more quiet spirit then my other sister and I. Dee has never spoken a word and has been wheelchair bound her whole life.
Recently, we have gotten her approval for a board that she can push the keys and it will allow her to tell us what she wants. I feel sad that all this time that she has been on this earth; she has never been able to express her love, desires, dislikes and feelings. Assistive technology is amazing, she can't communicate everything on this board, but she can definitely communicate more which is really exciting especially for my mom.
I try to stay close by to my family to help them out. I know that my mom is thinking about putting Dee into an adult home. It scares me a little to think about someone other than family taking care of her, but I know that my mom has had to be caregiver for so long, that she has had no opportunity to experience life. I am also realizing that as Mom gets older she is less capable of taking care of my sister's every need. It may be the best way to transition Dee before something happens to one of my parents. I am already assigned to be my sister's caregiver if anything happens to my parents. It scares me a little to think about how that would change my life, but I love my sister and my parents and would do anything for them.
I know that my older sister will help me take care of Dee, but she has more on her plate than she can handle right now, and quite honestly, she already has 2 little boys that she is raising on her own. I could never consider burdening her with the care of my younger sister as well.
I often wonder what her life could have been if it weren't for her cerebral palsy. Most of us have burdens that we carry with us that no one can see. For Dee, her obstacles are worn on the exterior. Maybe, in some ways that is better. People definitely show her more compassion than they show other people. We should probably treat all people as if they have a handicap. Everyone truly is handicapped in some way, don't you think?