ALD girl
12-27-2005, 11:15 PM
Love and Society
"Love, love changes everything, hands and faces earth and sky. Love, love, changes everything, how you live and how you die." "Andrew Lloyd Weber, Aspects of Love 1990.
When most people think of love they think of the love between a husband and a wife, or a girl-friend and a boy-friend. However, that is as far as it goes. In today's fast-paced get it done yesterday society, their is no room for love, sure we say that we love each other, but we really don't understand what it is to love. That is the reason that many children are ignored, especially those who are severely disabled. No one really takes the time to love and care for their emotional needs. While physically, they are protected from things such as serious chest infections, and stiffening of the joints, emotionally they are suffering just as bad if not worse then they are physically. The people who care about them get it worse, they are told they are selfish, and they are told that they are bleeding hearts. They are told that they don't care about there families, and that they live in there own world. It is comments like these that make people like these do that even more to proof that they do care about others. The reason why I know all this is because I loved a child who was severely disabled. Her name was Jessica, and the name of her disability was ALD.
From the start, Jessica was brought in to a world where no one wanted her, Born to a mentally unstable mother, and a father who attempted to rape her, It seemed that this child was going nowhere fast. To add to this, Jessica was born premature, and as a result of this she was blind, and also had a serious heart defect that required a valve that normally closes after birth to be surgically closed. If the operation hadn't been performed Jessica would have died from a large amount of blood loss. At the age of 8 she was sent to live with her maternal grandparents, a daycare worker and a bible banging insurance salesman, who treated her a little better then her biological parents did. In there care she wasn't raped, and she seemed to be thriving. However, in November of 2002, Jessica began to change. At school she became withdrawn, and at home she would have violent outbursts. Her grandparents threatened to send her back to her father, because they didn't have time to deal with her games. Although she tried to explain to them that what was happening to her was real and no game, they just continued to keep on living as if nothing was wrong. They thought that if they just ignored it, that it would go away. That was how her family dealt with problems. They felt that if they just ignored it, and allowed her to play her game, that she would get tired of it, and move on.
In the final week of November, Jessica was finally taken to a doctor who ran several tests on her. When it was revealed that everything was normal, Jessica was taken home and punished for making her grandparents miss work just so they could hear that there was nothing wrong with their granddaughter. However, on December 7, 2002, Jessica started spitting up large amounts of blood. Concerned about what may be going on, she was rushed to the hospital, where once again the same tests were done. This time, instead of the normal results that the last set of tests had given, this set showed that Jessica had some kind of metabolic disorder. Two days later on December 9, 2002 Jessica was given the diagnoses of adrenoleukodystrophy, a disorder so rare the doctor who diagnosed her had to look it up.
The disease usually starts between the ages of 4 and 12. The children who have it our normal at birth and usually don't start showing symptoms until the times that I had previously listed. Most of the time the disease starts out with changes in mood and personality as it did with Jessica.
The disease is divided up in to 4 stages. Stage 1 is characterized by behavioral changes that either take the form of violent outbursts, or depression. The child then starts having problems with both short and long-term memory, and may get disoriented in what were once familiar areas. Also during this time, the child develops a darkening of the skin, and may also start to have problems with bowel and bladder control, that as the disease progresses worsens. During stage 2, the child starts to have problems with walking, and speech becomes difficult to understand. The child also starts to have seizures, as well as problems seeing, and his or her hearing may start to be affected. Swallowing also becomes difficult, and a feeding tube becomes necessary to maintain nutrition. As speech and walking worsen, the child relies more and more on others to care for their needs. Eventually, the child is wheelchair bound and unable to speak. At this stage he or she is still able to smile and may still have limited movement in his or her hands. Towards the end of stage 2, the child begins to develop stiffening of the joints, and the spine begins to curve. The child is now bed ridden, and blind, and is also considered demented. During stage 3, disability worsens, and the child is now at a higher risk of developing pneumonia or some other chest infection. To prevent this, the child must be suctioned out regularly to keep any saliva from becoming trapped in the lungs. The child also stops making vocalizations, and also starts to have muscle spasms that can last anywhere from a few minutes to a few hours. The seizures that presented early on in the disease also worsen requiring the child to be sedated most of the time depending on the parents wish. Breathing also becomes difficult, and the child may be placed on part-time ventilatory assistance. Eventually, this to becomes full-time and the child lapses in to a coma. During stage 4, the child is comatose with no voluntary movement. Seizures also increase to the point where they are constant. The child then develops high fevers, and goes in to septic shock. It is septic shock that causes death for most of these children. While most of the children die from septic shock, cause of death is usually related to a condition called cerebral hyperpyrexia, a condition where the child develops a high fever as a result of pressure on the brain.
Doctors told Jessica's grandparents that most children with ALD die within 1-10 years of diagnoses. They were told to take her home, to give her anything she asked for, and to let the disease run its course. Over the next few months, I stood by and watched as Jessica got sicker and sicker. By march of 2003, she was barely able to feed herself, and speaking to her was often very heartbreaking. It started off with her not being able to find the right words, and from there, it got to the point to where the only way for me to understand her was to have her repeat herself more then once before I finally understood what she wanted.
Her family wasn't coping with this change well at all. If Jessica as much as slurred a word while in there presence, she would be severely punished. If she so much as fell she would be told to suck it up and to just go on with life. But, there came a time when her problems couldn't be hidden, there came a time when Jessica was in a wheelchair, and was no longer able to speak. It was at this point, that her family finally started to accept that this child was dying, and that denying it wasn't going to make it go away. Although they were now caring for her many medical needs, which by August of 2003 included a feeding tube, emotionally it was another story. The sicker she got, the less they cared about how she was feeling emotionally. It was as though she was nothing but a biochemical mess that didn't have feelings, and who was incapable of showing affection or of receiving it. It was for this reason that I used to comfort her when I felt she needed it. Since her family wasn't going to show her love, I took it upon myself to be not only her friend but her mother, as well as a shoulder to cry on for her family. Because I was so many things for her family, as well for her, I started to neglect my family. I didn't mean to do this but at the time, I felt that she needed me more then my family did. Looking back on it though, I realize that I was ignoring my family all because of a child that I barely knew, and that I would physically never meet. I considered her needs more important then my families needs, and it is this reason why they called me selfish. All because I was giving my love to one of societies outcasts. It wasn't only the age difference that wasn't acceptable it was the fact that she had a severe disability. I didn't care about any of that though, all I wanted was to make her feel as happy as possible as I could during her final months.
I would spend hours on the phone with her, singing speaking and doing all I could to let her know that I cared. One of her favorite songs was called Lorenzo. It told the story of a little boy named Lorenzo, who like her had ALD. Unlike her he had lived much longer then he was expected to. I don't think she understood the lyrics, but I think that she and Lorenzo shared a connection because of the fact that both of them were dealing with the same disease. Other things that calmed her down were the songs of Miriam Makeba, a Xhosa folksinger, and Maddy prior, a British folksinger. The songs of these artests transported her to another time, and in some cases to other places in the world and away from her current problems.
In September of 2004, Jessica died after fighting a year and a half battle against ALD. A few days before her death, she developed a high fever, and was vomitting. I knew she was dying but I didn't want to believe it. When she died she would have been 3 weeks away from her 14th birthday. I remember the last thing I said to her, just a few hours before she died. I told her that I loved her, in that even though her life was cut short because of ALD, she wouldn't be dying in vane, she would be dying for the many other children who would gain something from her loss. Her death left a void in my life that to this day has not been filled. That was how much I cared for her. She wasn't just a person I met over the internet. She was a person made of flesh and blood, who had feelings, and who wanted society to treat her as a person, despite her severe disability. Society treated her like she was less then a person, it treated her like she was nothing. It treated her like she was a peace of trash that no one wanted. Because I loved her as a friend I was made to feel guilty for feeling the way I did. I knew that everyone just wanted me to do what they did. They threw her away because she would never amount to anything. She would never go to high school or college, she would never marry or have a family. Therefore, what was the use of keeping her alive if she was never going to be a productive member in society. My parents often said that keeping her alive was a waste of taxpayers money. They thought that because she was so sick, that she would be better off dead, rather then languishing in a comatose state. I didn't feel that way, I loved her and didn't want to see her suffer. I wanted to help her to live, I didn't want her to die a slow and painful death, which is what wound up happening to her.
A few weeks after Jessica's death, I started to think about ways that I could help other children and families who were also dealing with leukodystrophy. I knew that I couldn't make it go away, but I could at least show them that they were not alone, and that they didn't have to go through the pain of this horrible disease by themselves. That was where the idea for an organization called the KWLDA or Kids with Leukodystrophy association came from. My love for Jessica lead me to do things for other children that were like her also suffering from this disease. I felt that this was another way to not only help me cope with my grief, but to show others that I'm not as selfish as they would like to believe. However, you can't force people to see what you want them to see, if they think your a selfish pig, and a ssoiled brat, then nothing you say or do would change there way of thinking. That was the reaction of not only my parents, but other people as well, when I told them about the organization. Other people didn't like it because in there eyes, I was only doing it to make people feel sorry for me, but I said before, they didn't aproof of the relationship so anything that dealt with leukodystrophy in their eyes was bad, and therefore was forbidden to be discussed.
As you can see, my love for Jessica changed my life. On my list of important people, she ranks up there among the likes of Biko, Silkwood and all the others who died for a cause. Jessica may not have died for a cause as important as freedom or workers rites, but her death was not in vane. Doctors will learn more about this horrible disease, and perhapse her death will prevent someone elses child from suffering so needlessly. But only time will tell if anything like that will ever happen.
"Love, love changes everything, hands and faces earth and sky. Love, love, changes everything, how you live and how you die." "Andrew Lloyd Weber, Aspects of Love 1990.
When most people think of love they think of the love between a husband and a wife, or a girl-friend and a boy-friend. However, that is as far as it goes. In today's fast-paced get it done yesterday society, their is no room for love, sure we say that we love each other, but we really don't understand what it is to love. That is the reason that many children are ignored, especially those who are severely disabled. No one really takes the time to love and care for their emotional needs. While physically, they are protected from things such as serious chest infections, and stiffening of the joints, emotionally they are suffering just as bad if not worse then they are physically. The people who care about them get it worse, they are told they are selfish, and they are told that they are bleeding hearts. They are told that they don't care about there families, and that they live in there own world. It is comments like these that make people like these do that even more to proof that they do care about others. The reason why I know all this is because I loved a child who was severely disabled. Her name was Jessica, and the name of her disability was ALD.
From the start, Jessica was brought in to a world where no one wanted her, Born to a mentally unstable mother, and a father who attempted to rape her, It seemed that this child was going nowhere fast. To add to this, Jessica was born premature, and as a result of this she was blind, and also had a serious heart defect that required a valve that normally closes after birth to be surgically closed. If the operation hadn't been performed Jessica would have died from a large amount of blood loss. At the age of 8 she was sent to live with her maternal grandparents, a daycare worker and a bible banging insurance salesman, who treated her a little better then her biological parents did. In there care she wasn't raped, and she seemed to be thriving. However, in November of 2002, Jessica began to change. At school she became withdrawn, and at home she would have violent outbursts. Her grandparents threatened to send her back to her father, because they didn't have time to deal with her games. Although she tried to explain to them that what was happening to her was real and no game, they just continued to keep on living as if nothing was wrong. They thought that if they just ignored it, that it would go away. That was how her family dealt with problems. They felt that if they just ignored it, and allowed her to play her game, that she would get tired of it, and move on.
In the final week of November, Jessica was finally taken to a doctor who ran several tests on her. When it was revealed that everything was normal, Jessica was taken home and punished for making her grandparents miss work just so they could hear that there was nothing wrong with their granddaughter. However, on December 7, 2002, Jessica started spitting up large amounts of blood. Concerned about what may be going on, she was rushed to the hospital, where once again the same tests were done. This time, instead of the normal results that the last set of tests had given, this set showed that Jessica had some kind of metabolic disorder. Two days later on December 9, 2002 Jessica was given the diagnoses of adrenoleukodystrophy, a disorder so rare the doctor who diagnosed her had to look it up.
The disease usually starts between the ages of 4 and 12. The children who have it our normal at birth and usually don't start showing symptoms until the times that I had previously listed. Most of the time the disease starts out with changes in mood and personality as it did with Jessica.
The disease is divided up in to 4 stages. Stage 1 is characterized by behavioral changes that either take the form of violent outbursts, or depression. The child then starts having problems with both short and long-term memory, and may get disoriented in what were once familiar areas. Also during this time, the child develops a darkening of the skin, and may also start to have problems with bowel and bladder control, that as the disease progresses worsens. During stage 2, the child starts to have problems with walking, and speech becomes difficult to understand. The child also starts to have seizures, as well as problems seeing, and his or her hearing may start to be affected. Swallowing also becomes difficult, and a feeding tube becomes necessary to maintain nutrition. As speech and walking worsen, the child relies more and more on others to care for their needs. Eventually, the child is wheelchair bound and unable to speak. At this stage he or she is still able to smile and may still have limited movement in his or her hands. Towards the end of stage 2, the child begins to develop stiffening of the joints, and the spine begins to curve. The child is now bed ridden, and blind, and is also considered demented. During stage 3, disability worsens, and the child is now at a higher risk of developing pneumonia or some other chest infection. To prevent this, the child must be suctioned out regularly to keep any saliva from becoming trapped in the lungs. The child also stops making vocalizations, and also starts to have muscle spasms that can last anywhere from a few minutes to a few hours. The seizures that presented early on in the disease also worsen requiring the child to be sedated most of the time depending on the parents wish. Breathing also becomes difficult, and the child may be placed on part-time ventilatory assistance. Eventually, this to becomes full-time and the child lapses in to a coma. During stage 4, the child is comatose with no voluntary movement. Seizures also increase to the point where they are constant. The child then develops high fevers, and goes in to septic shock. It is septic shock that causes death for most of these children. While most of the children die from septic shock, cause of death is usually related to a condition called cerebral hyperpyrexia, a condition where the child develops a high fever as a result of pressure on the brain.
Doctors told Jessica's grandparents that most children with ALD die within 1-10 years of diagnoses. They were told to take her home, to give her anything she asked for, and to let the disease run its course. Over the next few months, I stood by and watched as Jessica got sicker and sicker. By march of 2003, she was barely able to feed herself, and speaking to her was often very heartbreaking. It started off with her not being able to find the right words, and from there, it got to the point to where the only way for me to understand her was to have her repeat herself more then once before I finally understood what she wanted.
Her family wasn't coping with this change well at all. If Jessica as much as slurred a word while in there presence, she would be severely punished. If she so much as fell she would be told to suck it up and to just go on with life. But, there came a time when her problems couldn't be hidden, there came a time when Jessica was in a wheelchair, and was no longer able to speak. It was at this point, that her family finally started to accept that this child was dying, and that denying it wasn't going to make it go away. Although they were now caring for her many medical needs, which by August of 2003 included a feeding tube, emotionally it was another story. The sicker she got, the less they cared about how she was feeling emotionally. It was as though she was nothing but a biochemical mess that didn't have feelings, and who was incapable of showing affection or of receiving it. It was for this reason that I used to comfort her when I felt she needed it. Since her family wasn't going to show her love, I took it upon myself to be not only her friend but her mother, as well as a shoulder to cry on for her family. Because I was so many things for her family, as well for her, I started to neglect my family. I didn't mean to do this but at the time, I felt that she needed me more then my family did. Looking back on it though, I realize that I was ignoring my family all because of a child that I barely knew, and that I would physically never meet. I considered her needs more important then my families needs, and it is this reason why they called me selfish. All because I was giving my love to one of societies outcasts. It wasn't only the age difference that wasn't acceptable it was the fact that she had a severe disability. I didn't care about any of that though, all I wanted was to make her feel as happy as possible as I could during her final months.
I would spend hours on the phone with her, singing speaking and doing all I could to let her know that I cared. One of her favorite songs was called Lorenzo. It told the story of a little boy named Lorenzo, who like her had ALD. Unlike her he had lived much longer then he was expected to. I don't think she understood the lyrics, but I think that she and Lorenzo shared a connection because of the fact that both of them were dealing with the same disease. Other things that calmed her down were the songs of Miriam Makeba, a Xhosa folksinger, and Maddy prior, a British folksinger. The songs of these artests transported her to another time, and in some cases to other places in the world and away from her current problems.
In September of 2004, Jessica died after fighting a year and a half battle against ALD. A few days before her death, she developed a high fever, and was vomitting. I knew she was dying but I didn't want to believe it. When she died she would have been 3 weeks away from her 14th birthday. I remember the last thing I said to her, just a few hours before she died. I told her that I loved her, in that even though her life was cut short because of ALD, she wouldn't be dying in vane, she would be dying for the many other children who would gain something from her loss. Her death left a void in my life that to this day has not been filled. That was how much I cared for her. She wasn't just a person I met over the internet. She was a person made of flesh and blood, who had feelings, and who wanted society to treat her as a person, despite her severe disability. Society treated her like she was less then a person, it treated her like she was nothing. It treated her like she was a peace of trash that no one wanted. Because I loved her as a friend I was made to feel guilty for feeling the way I did. I knew that everyone just wanted me to do what they did. They threw her away because she would never amount to anything. She would never go to high school or college, she would never marry or have a family. Therefore, what was the use of keeping her alive if she was never going to be a productive member in society. My parents often said that keeping her alive was a waste of taxpayers money. They thought that because she was so sick, that she would be better off dead, rather then languishing in a comatose state. I didn't feel that way, I loved her and didn't want to see her suffer. I wanted to help her to live, I didn't want her to die a slow and painful death, which is what wound up happening to her.
A few weeks after Jessica's death, I started to think about ways that I could help other children and families who were also dealing with leukodystrophy. I knew that I couldn't make it go away, but I could at least show them that they were not alone, and that they didn't have to go through the pain of this horrible disease by themselves. That was where the idea for an organization called the KWLDA or Kids with Leukodystrophy association came from. My love for Jessica lead me to do things for other children that were like her also suffering from this disease. I felt that this was another way to not only help me cope with my grief, but to show others that I'm not as selfish as they would like to believe. However, you can't force people to see what you want them to see, if they think your a selfish pig, and a ssoiled brat, then nothing you say or do would change there way of thinking. That was the reaction of not only my parents, but other people as well, when I told them about the organization. Other people didn't like it because in there eyes, I was only doing it to make people feel sorry for me, but I said before, they didn't aproof of the relationship so anything that dealt with leukodystrophy in their eyes was bad, and therefore was forbidden to be discussed.
As you can see, my love for Jessica changed my life. On my list of important people, she ranks up there among the likes of Biko, Silkwood and all the others who died for a cause. Jessica may not have died for a cause as important as freedom or workers rites, but her death was not in vane. Doctors will learn more about this horrible disease, and perhapse her death will prevent someone elses child from suffering so needlessly. But only time will tell if anything like that will ever happen.