I blog a bit and follow numerous fellow cyberspace friends'
blogs, I lurk on chat groups for parents of the disabled and comment when useful, I read much online. Despite our levity, our moments of being morose, our sense of compassion and unity, we all suffer in a way distinct from the common person, the "normal" ones.
blogs, I lurk on chat groups for parents of the disabled and comment when useful, I read much online. Despite our levity, our moments of being morose, our sense of compassion and unity, we all suffer in a way distinct from the common person, the "normal" ones.
What I have learned or what my reality has created, is the belief that there are three circles of suffering in a place between heaven and hell, a limbo of sorts. I call it a limbo because both the children with disability and their parents exist in a place between the vision of joy and the view of dread...a place between living and dying.
To me, there appear to be three layers in this inferno (perhaps more), types of human conditions in which parents and children of the disabled reside.
First, and perhaps the optimum circle, includes parents with severely disabled children who have the resources to thrive. Often they blog, they exude hope, they see humor in a humorless world. Often they are able to care for their children at home with some assistance and above all, they are able to mobilize the resources to explore all the alternative therapies which benefit the children. In most cases, their family unit is stable, although they also suffer from the disappearing friends and family syndrome. They reside in the circle closest to Paradiso.
Second, distant from the former circle, exist a group of parents of severely disabled children who can't maintain the level of sanity provided by blogging. They survive in the chat groups and support groups for parents of disabled children. They have few resources, many times without a significant other (usually because the Man can't cope), and cannot speak strongly enough to navigate the support systems. They are allotted few hours of respite or assistance, beg on the support groups for an extra mic key set or trach setup, are denied school and health services without the ability or knowledge to appeal. They have no access to alternative therapies and constantly plead for even the most minuscule of resources. They live on the verge, give more than their all, and relentlessly love their children. They exist in the belly of limbo.
Third, and farthest removed from Paradiso and teetering on the edge of Inferno, are parents of disabled kids who simply could not do it. You find them neither blogging nor on chat groups. They cannot even support themselves let alone their children. They have nothing: no resources, no energy, battered by life, little education and do not survive. They place their children in institutions, in pediatric nursing homes or other care facilities. The energy to visit their children diminishes over time, they are devoid of the lust for life. Children in these situations fail to survive. "Abandon all hope, ye who enter here."
My hearts bleeds for this group, my heart bleeds for the second circle. It is only the first circle that the universe has provided what is needed. I often wonder why society and humanity cannot look at those who have been totally beaten down by life and why humanity cannot provide an equal opportunity to parents and kids at each level of suffering. We bailout banks and insurance companies, subsidize energy conglomerates and pay unconscionable salaries to government bureaucrats, yet deny (as in Massachusetts) dental care for severely disabled adults.
I am thankful that I live in the first circle, I love to philosophize about the nature of disability, alternative treatments, provide verbal support to fellow parents of disabled kids. There is a bigger issue, perhaps as the existentialist, Albert Camus, stated : "I refuse to live in a world where little children suffer and die each day." That's my problem; I have no solution.
Second, distant from the former circle, exist a group of parents of severely disabled children who can't maintain the level of sanity provided by blogging. They survive in the chat groups and support groups for parents of disabled children. They have few resources, many times without a significant other (usually because the Man can't cope), and cannot speak strongly enough to navigate the support systems. They are allotted few hours of respite or assistance, beg on the support groups for an extra mic key set or trach setup, are denied school and health services without the ability or knowledge to appeal. They have no access to alternative therapies and constantly plead for even the most minuscule of resources. They live on the verge, give more than their all, and relentlessly love their children. They exist in the belly of limbo.
Third, and farthest removed from Paradiso and teetering on the edge of Inferno, are parents of disabled kids who simply could not do it. You find them neither blogging nor on chat groups. They cannot even support themselves let alone their children. They have nothing: no resources, no energy, battered by life, little education and do not survive. They place their children in institutions, in pediatric nursing homes or other care facilities. The energy to visit their children diminishes over time, they are devoid of the lust for life. Children in these situations fail to survive. "Abandon all hope, ye who enter here."
My hearts bleeds for this group, my heart bleeds for the second circle. It is only the first circle that the universe has provided what is needed. I often wonder why society and humanity cannot look at those who have been totally beaten down by life and why humanity cannot provide an equal opportunity to parents and kids at each level of suffering. We bailout banks and insurance companies, subsidize energy conglomerates and pay unconscionable salaries to government bureaucrats, yet deny (as in Massachusetts) dental care for severely disabled adults.
I am thankful that I live in the first circle, I love to philosophize about the nature of disability, alternative treatments, provide verbal support to fellow parents of disabled kids. There is a bigger issue, perhaps as the existentialist, Albert Camus, stated : "I refuse to live in a world where little children suffer and die each day." That's my problem; I have no solution.
