Monday, July 21, 2008


My dear friend Jody called me yesterday with an update about her daughter Lueza who has been in pediatric intensive care for over a week. Lueza has severe cerebral palsy and is susceptible to pneumonia -- and it's difficult for her to get well. Despite being locked into a body that doesn't function well or at all right now, her heart beats strong and she has managed to smile through the tubes and masks and twisted position where she lies in a hospital bed. Jody and her husband have to make a horrific decision whether to put a trach in Lueza and it might be the only thing that'll save her. Jody called me and said, "In thirteen years, I've always known at a gut level what to do for Lueza. I have always known what's right for her. I don't know what to do." I'm not sure what I said but I know I just listened to her explain the situation and I was mainly conscious of listening -- wanting to interrupt and ask questions but trying really hard to just listen. I don't have an opinion, here, I wanted to say and finally felt relieved when she asked me whether I would throw the I Ching with her. Over the phone.

I recently had an article published in the magazine "Spirituality and Health," and in the article discussed when I had actually consulted this ancient oracle. Lest you think I'm insane, the edition that I have is introduced by none other than Carl Jung which sort of gives it validity. But with anything esoteric, I tend toward belief, and the notion of synchronicity, which the I Ching illustrates, is pretty powerful.

Back to Jody. I have three special pennies that I keep for throwing, and I only throw the I Ching for serious decision-making. Jody said she does as well. I won't go into what question we asked and what answer we received. This is all about life and death and the quality of life and what makes a life and what makes a life worthwhile.

Today, another friend with a daughter the same age as Sophie also called. Her daughter, like Sophie, has a severe seizure disorder that is uncontrolled by medication. Unlike Sophie, though, Morgan's seizures make her turn blue and she is often resuscitated by her overnight nurse. This has gone on for over thirteen years and during those years, Morgan's development has been severely compromised. When I told Susan about Jody's daughter and the difficult decisions she faces, Susan replied with her own horror story. It seems that the neurologist they take Morgan to recently asked them what her quality of life was like in the day. I think it went sort of like this:

"If you need the nurses at night to basically save Morgan, what sort of life are you saving?"

I felt ice rise from my stomach to my throat. The beginnings of anger at a physician's audacity. Strangely, though, this wasn't Susan's concern. She spent the next ten minutes or so railing about just how poor Morgan's "quality of life" really was -- she doesn't smile or get excited about anything; her cognitive abilities are unknown and her social life is increasingly constrained. Morgan is thirteen years old and has been included in a general education classroom for years. Susan said that this is the first year of middle school, and Morgan has no friends for the first time. It seems that adolescents find it harder to befriend her. No surprise. Why my icey reaction? I think, perhaps, that it has to do with the projection of what quality of life is. I tried to explain to her that barring real, physical suffering, who was to say what Morgan thought of her own life. Does normal cognition presuppose validity? Who are we to project our notions of what is normal, what is valid, what is human?

This is the sort of impossible conundrum that we parents of special needs children face. What makes a life?

I like to think that Sophie is world unto herself. In the same way that my "typical" children are. I realize that there might be some sort of denial going on, but who is to say what makes a life worthwhile? She is alive and that is good and beautiful. As parents of special needs children we live with the sinking feeling that we might outlive them. And that is supposed to be better than the alternative. There is no way to properly feel this, think about this, live with this. We just do our best.

So, those were the two conversations I had in less than 24 hours. There was no one to tell about them -- we keep to ourselves because who, really would understand?

1 comment:

  1. Because I live in the "Jack and Henry" and "Belle and Oliver" world, I have never really known of the day to day struggles you have as a mom of a young girl like Sophie. I don't understand. I will never really know. But your writing helps. And it, at the very least, reminds me of life, the goodness of it, and the blessings that surround us, no matter how big or small. And it reminds of me of Sophie. And of her beautiful, strong mother fighting for her, every single second of every long, exhausting, blessed, day.

    Thanks for sharing, Elizabeth.xo



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