Monthly Archives: March 2016

Rings of Hell

will in hospital

I have been beaten, molested, and abandoned; yet what has almost broken me has been watching my son, Will, endure 37 surgeries and invasive medical procedures in 12 years. When you are the mother to a child who is medically fragile, who has a severe intellectual disability, and who doesn’t understand why he is being tortured, but sees you as simultaneously being the one who delivers and holds him down for the torture and then comforts him after—it’s Hell.

There really is no one other word for it. “Hell” is the worst place I can imagine. I spent some time in a few fundamental churches where Hell was so vividly described that I spent years terrified of being consumed by fire and demons, because I had never been baptized. A babysitter and later a step family member had no problem dragging me to their churches, but of course, no one talked to me about the positive promises God offers like forgiveness or faithfulness. I recall begging my mother to get me baptized, because I was so frightened of dying and going to Hell before I could be baptized.

So I designate and assign this surreal experience of month after month watching my child suffer the only descriptor I can conjure: Hell. After each major surgery, people will kindly offer their sympathies, noting the typical clichés we parents of special needs kids are so used to hearing:

  • “I don’t know how you do it.”
  • “It must be so hard.”
  • “I’m praying for you and your family.”

It isn’t “hard,” I say, “it’s Hell.” Of course, this response creates an awkward exchange, because I didn’t reply with the obligatory, “Thank you, Jim and I appreciate that.”

It’s not that I don’t appreciate the sentiment. I do. And, I understand that folks just want me to know that they are thinking of us. And, again, I appreciate it. But, I’m just tired. And, I don’t have the energy to rewind and replay the clichés anymore. We have all said them, and said them to many times to one another.

  • “I don’t know how you do it.”

Well, I don’t have a choice. And many days, I am not sure I can or I will. I wish I had more help.

  • “It must be hard.”

It’s not hard, It’s Hell. Hard connotes something, which can be overcome. This Hell of never ending procedures is the norm for Will’s life and our life. He will always have to endure these procedures and surgeries to stay alive. Part of his living requires constant pain.

  • “I’m praying for you and your family.”

Thank you. Please keep praying or sending good vibes to the Universe or up to Allah, whatever your beliefs. I am now a prayerful person. I did find my God, and he makes more sense to me now. But, I would love for you to come by and offer to help me for even one hour with Will. Come by and visit the hospital room and bring me a much-needed cup of coffee when I’m awake for 39 hours so I can keep him from aspirating and choking. Or, ask me out for a good cry and a glass of wine when it’s all over. Learn more about my world with Will.

You see, we don’t overcome, we simply are forced to find a way to survive in the new ring of Hell we find ourselves in.

Unlike Dante’s Inferno, we don’t move neatly through the nine circles. During those few weeks or few months here and there when Will is stable and life is “normal,” we find ourselves in Limbo, but then once we learn that another procedure or surgery must be performed, we find ourselves in the fifth circle of Anger.

From there, we proceed to the seventh circle of Violence where Will’s body is assaulted. After the violence, we move back again to Anger and then once his recovery improves, we move back to Limbo.

For us, at least according to Dante’s levels, we really only experience three of the circles. Purgatory and paradise aren’t options for us. It’s Hell after all; there is no purgatory or paradise in Hell. Those are out of reach for us.

Please note that being a mom to a child like Will is as joyful as it is challenging, but the chronic medical puncturing? It isn’t ever joyful, and it’s way more than challenging—it’s Hell.   While I would never change who Will is—a beautiful, brilliant, and brave boy who is uniquely and differently abled. I would take away his pain and these procedures. And I don’t know any mother who wouldn’t.

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Rings of Hell

will in hospital

I have been beaten, molested, and abandoned; yet what has almost broken me has been watching my son, Will, endure 37 surgeries and invasive medical procedures in 12 years. When you are the mother to a child who is medically fragile, who has a severe intellectual disability, and who doesn’t understand why he is being tortured, but sees you as simultaneously being the one who delivers and holds him down for the torture and then comforts him after—it’s Hell.

There really is no one other word for it. “Hell” is the worst place I can imagine. I spent some time in a few fundamental churches where Hell was so vividly described that I spent years terrified of being consumed by fire and demons, because I had never been baptized. A babysitter and later a step family member had no problem dragging me to their churches, but of course, no one talked to me about the positive promises God offers like forgiveness or faithfulness. I recall begging my mother to get me baptized, because I was so frightened of dying and going to Hell before I could be baptized.

So I designate and assign this surreal experience of month after month watching my child suffer the only descriptor I can conjure: Hell. After each major surgery or hospitalization, people will kindly offer their sympathies, noting the typical clichés we parents of special needs kids are so used to hearing:

  • “I don’t know how you do it.”
  • “It must be so hard.”
  • “I’m praying for you and your family.”

It isn’t “hard,” I say, “it’s Hell.” Of course, this response creates an awkward exchange, because I didn’t reply with the obligatory, “Thank you, Jim and I appreciate that.”

It’s not that I don’t appreciate the sentiment. I do. And, I understand that folks just want me to know that they are thinking of us. And, again, I appreciate it. But, I’m just tired. And, I don’t have the energy to rewind and replay the clichés anymore. We have all said them, and said them to many times to one another.

  • “I don’t know how you do it.”

Well, I don’t have a choice. And many days, I am not sure I can or I will. I wish I had more help.

  • “It must be hard.”

It’s not hard, It’s Hell. Hard connotes something, which can be overcome. This Hell of never ending procedures is the norm for Will’s life and our life. He will always have to endure these procedures and surgeries to stay alive. Part of his living requires constant pain.

  • “I’m praying for you and your family.”

Thank you. Please keep praying or sending good vibes to the Universe or up to Allah, whatever your beliefs. I am now a prayerful person. I did find my God, and he makes more sense to me now. But, I would love for you to come by and offer to help me for even one hour with Will. Come by and visit the hospital room and bring me a much-needed cup of coffee when I’m awake for 39 hours, so I can keep him from aspirating and choking. Or, ask me out for a good cry and a glass of wine when it’s all over. Learn more about my world with Will.

You see, we don’t overcome, but each time, we are forced to find a way to survive in the new ring of Hell we find ourselves in.

Unlike Dante’s Inferno, we don’t move neatly through the nine circles. During those few weeks or few months here and there when Will is stable and life is “normal,” we find ourselves in Limbo, but then once we learn that another procedure or surgery must be performed, we find ourselves in the fifth circle of Anger.

From there, we proceed to the seventh circle of Violence where Will’s body is assaulted. After the violence, we move back again to Anger and then once his recovery improves, we move back to Limbo.

For us, at least according to Dante’s levels, we really only experience three of the circles. Purgatory and paradise aren’t options for us. It’s Hell after all; there is no purgatory or paradise in Hell. Those are out of reach for us.

Please note that being a mom to a child like Will is as joyful as it is challenging, but the chronic medical puncturing? It isn’t ever joyful, and it’s way more than challenging—it’s Hell.   While I would never change who Will is—a beautiful, brilliant, and brave boy who is uniquely and differently abled. I would take away his pain and these procedures. And I don’t know any mother who wouldn’t.