Today’s Topic: My experience in dealing with a loved one that suffered from Lupus
Definition – n. any of various diseases or conditions marked by inflammation of the skin, especially lupus vulgaris or lupus erythematosus. (google)
This definition meant nothing to me. I had no clue what it was or how it affected the body. I just knew that my God-sister had it. I can say that I don’t really know that much more about it today than I did when I lived with and helped take care of my God-sister. All I knew was I once again was being removed from my home due to the abuse and I was asked by the courts where did I want to go my first response was my grandmother but that was quickly shut down because the courts was informed that my biological father and his brothers were on drugs and had access to the house which made it an unsafe environment for me the courts agreed and asked if I had a second choice. I told them I wanted to go to my God mother’s in Erie not aware of the current situation she was dealing with. She said I could come live with her and the courts approved the placement. It is now the beginning of the sixth grade and I am moving in with my God mother. To my surprise I walk in and my God-sister is in a wheelchair, limbs retracted, hole in her throat, tube in her stomach and I’m like what’s wrong with her. I was told she was in a coma yet another situation I wasn’t aware of. From what I was told my God-sister had flew to Erie in the winter to visit someone and had a Lupus flair, she went to the hospital it which time she slid into a coma. I don’t know all the details on how she was brought home to live but what I can talk about is how I lived with her and cared for her. I lived with my Godmother and God-sister my whole middle school years and during this time it became a part of my life to care for not only my God-sister but also my Godmother who wasn’t coping well with how her daughter was. I feel as though God sent me to her at a time she really needed someone there. Although I know how much they loved me I don’t think it was the best place for me. I was coming from an abusive home to have to quickly learn how to care for my God-sister. We had a nurse that would come in the home and help care for my God-sister but most of the time it was up to us and other family members. I learned how to dress her, do her physical therapy, clean her tracheal tube, re-insert her feeding tube, bathe, put her in and out of the bed, care for bedsores, everything she needed. My relationship with my Godmother became more and more stained as the time went on for several reasons; although I knew she loved me I wasn’t feeling it because her drinking and marijuana smoking became an all day thing and she didn’t have time to help me with what I was going through and I began to act out and argue a lot with her. I would come home late, I would stay at church when I wasn’t suppose to, I wouldn’t come straight home from school and ended up losing my virginity while living with her. We would argue so much that my God-sister would cry, cough out her tracheal tube, or pull her feeding tube out of her stomach to get us to stop. When she would do this I would always feel bad and guilty for acting out but I didn’t have anyway to let out what I was going through and I felt that my Godmother felt like I should have just been happy that I wasn’t living at home. What I keep trying to explain to her was I might not be getting beat on but what I was going through with her wasn’t any better. I spent most days caring for my God-sister because when we didn’t have help there my Godmother was in no condition to care for her. I would have to get up in the mornings and care not only my God-sister but change the sheets in the bed before my Godmother woke up because she would be so drunk she would use the bathroom on herself before the nurse would come so I could go to school. My Godmother finally found a rehab that would take my God-sister in North Carolina and when she got ready to take her she told me it would be best if I moved back home with my parents and while they moved to North Carolina I ended back at home yet again. I wasn’t home but a month when I received a call from my Godmother telling me that my God-sister had passed away. She asked my parents if I could go to the funeral and they told her “NO.” No one talked to me or explained to me that it wasn’t my fault that my God-sister died. I lived with the guilt for years thinking if I was there she wouldn’t have died. I thought that I did something wrong. As a result of me not being able to go to the funeral I lost all contact with my Godmother until 2004. Even God reunited us our relationship has been strained. I may talk to her once or twice a year now. When we reconnected I found out all that she went through after my God-sister passed; she received a settlement from the hospital, she lived in Atlanta for some time had opened a club that she ended up losing because of her drinking, she almost died as a result of her drinking and various other things and now she is back in North Carolina still struggling with her sobriety while harboring much anger. I have got to a point of peace in my life and I can’t receive what she is giving out and I chose to love her from a distance. I support her as much as I can while not allowing her to suck me into self pity. I feel that God has us on this earth for more than that and we have a job to do so I’m being obedient to him and when and if she decides to get it together I am here for her. She can’t love me and mine when she don’t love herself!
Many Blessings & Much Love