Single Mother Needs Wheelchair Van For Cerebral Palsy Disabled Daughter
by Ken-Netta Fowlkes
I remember sitting in the window of our two-story row house thinking that Marcus was playing a joke (he was a jokester) on us, and that he was coming back. I was in denial. I didn't want to accept the fact that my twin brother was gone. The day I saw him lying in his casket is when I knew it was real. June 19th the day of our birth was the day we were both put on this earth. There were times when we argued and said things that we did not mean, but there were more times when we worked as one team. I never thought he would leave me so soon. When I realized he was gone my life seemed doomed in one fell stroke. My heart was beating fast and I could not move. I didn't want to face the fact that my twin was gone and he wasn't coming back … then … Fetus heart rate dropping! We are going to have to do an emergency cesarean section. The next thing I remember is lying there with a group of doctors in extremely bright lab coats, standing over top of me with a look of sorrow in their eyes. On the left side of my bed stood my mom with the same pain I saw in her eyes the day my twin brother was brutally murdered. They told me that my baby was on a respirator because she was born with no vitals. They explained to me that it would be unlikely that my baby would make it through the night. Look … she's 10 years old!!! I was devastated. What did I do to deserve this? The doctors suggested that I rest before going to see my Cor-tasia (my baby). They had stopped my heart and put me on a respirator so that they could save my baby. I couldn't rest though. I needed to see my baby and to tell her just how much I love and needed her to stick around. Behind all the tubes, the loud beeping noises, and the nurses over in the corner trying not to look at me for fear of not knowing what to say, was a beautiful baby girl. Cor-tasia was gorgeous! She had caramel colored skin, a head full of jet-black hair and the most beautiful hands that I had ever seen. I couldn't hold her so I reached my hand into the incubator and pleaded with her. I told her that she had to come home to her Sesame Street room. I told her that I had been waiting nine months to see her. I never missed a day seeing my baby. We read a new book every day. Even after I was discharged, I slept in the waiting room. I had promised Cor-tasia that I wasn't going home until she went home. My parents always told me that love means everything, and I knew how to love very well because I had the experience of being loved. I just needed to get my baby home so I could give her all of my love. I wanted to hold, feed and soothe her. I wanted to be her mother. According to Erik Erikson, this is an important stage in a child's life, the oral sensory stage. Touch and visual contact are very important, and my baby had certain needs that I needed to meet. A mother's role according to Erikson is very important during this time in order for a child to develop trust. As the days went on, the tubes began to disappear, and 30 days later I took my baby home. Although I was happy to finally take my baby home, I was scared. I didn't know what to expect. The doctors told me that Cor-tasia did have some brain damage, but they didn't know to what extent. At age six months, Cor-tasia had an MRI. Cor-tasia had cerebral palsy. Now it's not like I didn't know that anything was wrong because she clearly wasn't developing at the typical pace of a six month old, but I never imagined cerebral palsy. I thought she was simply a little behind. I was devastated. What did all this mean? How was I going to teach my daughter to be proud of who she is when I myself couldn't come to grips with it? What if she never walks or talks? Would she begin to compare herself to others as she got older, and develop low self-esteem? "With a strongly self-centered view of the world, children often believe that an illness is punishment for something they did wrong." I know I was looking way ahead, but I was scared. Would my daughter ever go to the prom, have her first boyfriend, get married and have her own family? I went into a deep depression. Although I did a great job at taking care of Cor-tasia, I wasn't taking care of myself. I didn't want to face reality because the reality was that my daughter had cerebral palsy, and that she may never walk or talk. I started losing weight from my already frail body, my skin was very badly broken out, and I spent most of my nights after Cor-tasia went to bed smoking cigarettes, and feeling sorry for myself. I couldn't keep anything in my stomach and therefore went days without eating. Suddenly, one day while changing Cor-tasia, I heard a voice that said, "Stop feeling sorry for yourself; you're just wasting time." I realized that the amount of stress I allow myself to be under depends on how I feel about my daughter's disability. I began reading everything that wasn't nailed down, that pertained to my daughter and her disability. The best chance a child has at securing a level of high self-esteem is to have parents that possess it, model it and want to instill it in their children. My body had experienced what is referred to as Selye's General Adaptation Syndrome. I became alarmed, tried to resist the stressor, and then my body went through exhaustion. It was time for me to get up and play the cards that were dealt to me. I needed to play this hand to the best of my ability. I began to reach out and network. I began surrounding myself with people that shared my pain. People with similar stressors are good with informational and emotional support. In addition, I enrolled and was accepted to the University of Pittsburgh where I graduated four years later with high honors, and just recently received my masters in psychology. Cor-tasia now attends the Children's Institute and receives physical therapy, occupational therapy, speech therapy, as well as conductive education. Cor-tasia is 10 now. All the time I spent asking myself "Why me?" I should have been asking myself why not me. Who am I that I don't have to go through this. It is through "going through" that our character is built, and that we learn. I am thankful to my parents for a wonderful childhood, and although they weren't perfect they gave parenting their all. "What goes right in childhood predicts the future far better than what goes wrong." To say that it was an easy transition to transition from feeling sorry for myself to playing the out of the cards I was dealt would be far from the truth, but I have come a long way. I still get sad sometimes, but God and my baby do not allow me to stay sad very long. I simply keep it moving. I have learned to cherish life, and I use my brother's death to remind me how fortunate I am to have my baby. I think about the things that my daughter "can" do as opposed to what she can't. Cor-tasia is one of the happiest children I have met in my life, and although she is totally dependent upon me, she is a determined little girl. Cor-tasia has cerebral palsy, but she is determined not to let cerebral palsy have her. I love you Tasia! I am currently working part-time as a result of childcare and am in great need of a wheelchair accessible van and a down payment on a ranch style home. As much as it pains me to ask for help, I realize that I am only one person and as long as I am trying, it is ok to ask for help. Please help.
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