Calling it Like it Is
Elizabeth Aquino | Monday, September 21, 2009 at 1:47PM Last week, I had the great opportunity of hearing one of my favorite writers, Lorrie Moore, read from her new novel. Moore hasn't published a new book in eleven years, not since Birds of America, a collection of short stories that you must read, if you haven't already. I came to Lorrie Moore through the New Yorker magazine when I read her short story "People Like That Are the Only People Here: Canonical Babbling in Peed Onk." This was many years ago, when my daughter Sophie, who is now fourteen years old, had been diagnosed with infantile spasms, a rare and devastating type seizure disorder. The short story is bitter, funny and moving and spoke to me specifically because bitter, funny and moving is what sustains me. I ripped the pages out of the magazine and folded them up and put them into my purse. I carried them around with me until they were worn thin and creased from being opened and folded so many times. It's a story, a piece of fiction, that describes the diagnosis and treatment of a small boy with cancer and the reactions to this horrible thing by his mother and father. I remember feeling awe that Moore was able to so perfectly channel the feelings of a mother whose world has been turned upside-down by her child's diagnosis.
At some point in the story, the baby is out of surgery and recovering in the pediatric cancer ward. The little boy lies in his crib, connected to tubes and wires, and his mother, shell-shocked and aghast writes that she only feels comforted by her own friends who acknowledge the pain and horror of the situation. She writes, "Like true friends, they take no hardy or elegant stance loosely choreographed from some broad perspective. They get right in there and mutter, "Jesus Christ!" and shake their heads." Her husband's family, on the other hand, while well-meaning, try to console her with platitudes and positive remarks. I have found that I, too, am sustained by those who affirm my situation caring for a severely disabled child as the difficult situation that it is. While I am very much aware that I am privileged in many ways -- with a support system, with love and friends and good medical care, the anguish and despair that I feel, often, isn't always mitigated by those things. And when people say, "Things could be worse," or try in some fashion to lighten the load with cheerful admonitions, I feel inadequate, that I am somehow unable to cope properly. Because, as many of you know, having a child with a severe disability is a constant balancing act, a tipping and toeing on an awfully thin line. I must balance despair and hope, and acceptance and surrender, an incessant tipping and toeing that really almost never lets up. When someone comes along and affirms this difficulty, well, it sustains me.
I went to a yoga class today, knowing that I needed to post something on Hopeful Parents. And, frankly, I have little hope these days. It's all I can do, actually, to even get to a yoga class, and as I drove over to the studio I felt lonely and isolated. I don't really know anyone at my yoga studio. I practice kundalini yoga which seems, in many respects, "alternative" yoga. But today, when I sat down on my mat and waited for the teacher, a beautiful woman sat next to me and introduced herself. It turned out that we had met many years before at our children's preschool. When she asked me about my daughter I told her a bit about our struggles but didn't go too much into it because, well, why would I? In any case, at some point in the conversation, this woman said to me, with tears in her eyes, "Oh. That just sounds so brutal."
And that's when I had hope, again. Her quiet acknowledgement of my pain filled me with hope. I can do it, is what I thought. It's going to be all right.
We landed up talking for twenty minutes after class, too, right in the parking lot. I learned that she had grown up with a father who suffered from multiple sclerosis and who died when he was only 56 years old. We spoke about being a witness to suffering and we spoke about perspective. We reminded each other of what it means to be a mother, of how little control we have and how big and unique our children's personalities and paths are.
Thank you, Lucy, for bringing me hope today. For offering your arm as I teetered and for seeing, with me, the depths, over which I balance.
Reader Comments (13)
I love you, Elizabeth because you are honest.
This is simply a beautiful piece of writing. I nodded in agreement with many of your sentiments and have only two friends who are able to acknowledge the brutality of it all, God bless them. It's the only thing that helps.
Thanks elizabeth for the honesty and for the reminder, i had a moment like that early last year and it made such a difference to me as well
It is brutal, it is unfair and it is like water over a stone, that and much more. I don't have a child with special needs, but I have worked with children with very special needs. I know with empathic knowledge, arrogant as this may sound, what it is like to see your dreams go up in a hell of seizures, spit and misery that one cannot believe is inflicted on a child, less yet to see it day in and day out knowing that you are prisoners in a maze without exit. It is the unmitigated wondering why? why she/he? why us? why me? I have held parents so at the end of their rope that I feared for their sanity and their equilibrium and yet they, as all the parents I have met in this situation, pulled themselves from that unfathomable chasm and went on with their everyday life, paying bills, going to the market, answering the phone, balancing their five hundred pound world on a teaspoon for the sake of the child and the other children in the family. I was a part time witness to that, and my heart broke every time I crossed that gate.
So yes, it is brutal and then some. But to me what is even more brutal is the collective indifference of the communities that continue to ignore the desperate need for relief. Where are the relief caregivers?
Why are our tax dollars spent in ways that perhaps someone standing on his/her head and reading backwards could only begin to make sense of, while more and more states are cutting the miserly sum we allocate to help those who need it the most here? I am sorry Elizabeth, I didn't mean to rant on your post. But after all I have seen and learned it matters little to me that I don't have a child with special needs to speak for or that I am not the parent of a child with special needs to speak about this. I don't feel sorry for you or any other parent, I feel a deep and abiding sense of respect and admiration. I am not sure I could do what you do. Honestly. I don't know I would have the courage to endure what you all go through day in and day out. I have seen hell as a visitor and I cannot begin to comprehend how you all can live there and stay sane. Maybe that is one reason why I am so proud of you and of what you do, and why I do love you.
Yep. Validation. We all need it. The pat "God doesn't give you more than you can handle" stuff is not helpful when you are at the end of your rope. Sometimes we just need a nod of acknowledgement.
I'm climbing Mt. Everest here. Thanks for noticing.
I'm so tired of being told how strong I am. I'm not strong. I cry everyday and pray every night that things will get better.
Like Deb, I'm also tired of being told how strong I am. I am no less vulnerable than anyone else. It has often been very painful, and we benefit so much more from the acknowledgment of that than pat responses. Thanks for eloquently putting this feeling into words.
Yes! The most meaningful words I heard after Oscar was born were "I'm sorry about your baby". All the platitudes just left me cold and angry. The burden is lighter, and hope creeps in, when the heartbreak and hard work are acknowledged.
It's all beautiful, but that last sentence of gratitude to Lucy was exquisite.
Such a beautiful post. Tears in my eyes (ok, crying my eyes out). Simple acknowledgment of the reality of a situation is so powerful.
Elizabeth,
I'm getting caught up with your blog this afternoon, and it's wonderful to hear your voice. I like hearing you tell it like it is.
Thank you for showing the compass you hold in your hand. I feel certain I will need to know how to read that compass - if not today, then tomorrow.
I'm thankful that you go to yoga...and thankful that, just when you needed it, compassion and inspiration showed up in the same person. It's wonderful that the universe, God, Holy Spirit - whatever you want to call the Power of Love - shows itself! This gives me hope, too.
Real community is a gift. Your honesty & humor are gifts to me, and you are part of my "community." Thank you!
What an inspiring post. The way you carried those torn pages around, the way that old acquaintance acknowledged your pain. Many thanks for sharing.
Greetings from London.