Sharing the Moon

Today, I am aware of the blessing of able-bodied children. I am so keenly aware that I feel guilt mixed with the gratitude that I should be so blessed, when others have such challenges. And yet I suspect my guilt is only more evidence of how little I understand.

I read Elizabeth's post today about Ian Brown's book The Boy in the Moon. She wrote about finishing the book on a cross country flight, then locking herself in the plane's bathroom and weeping. She said the book had changed her life. It was such a powerful piece of writing, this one paragraph post of Elizabeth's, that I immediately ordered the book. But impatient soul that I am, I also searched for a review, so I could learn what the book was about. It is a memoir by the father of a disabled boy, born with a rare disorder that renders him unable to speak or fend for himself in the most basic ways. It is a memoir of devotion and hardship and sacrifice that explores how the need to care for a loved one with a disability can finally deepen us and make us more ethical, more forbearing, more fully loving and committed souls.

Before reading Elizabeth's post, I had put up a list of all the things my daughter had learned how to do at the farm, the one she went to several times a year with her classmates from second grade through eighth. I put the list up because I marveled that my child could do things like milk a cow and weave textiles and wade in a frog pond and build a dam made of sticks in a river and play manhunt in the dark country night, hiding under a farmhouse with no fear of critters. I was thinking how I cannot do any of these things, and I was sitting here missing my children and relishing the ways in which they have grown into themselves, even as they branch outward. There is nothing wrong with the sense of wonder my children evoke in me. There is nothing wrong with admiring the way my son flies over hurdles on a running track and moves through space with the unconscious sinew and grace of a dancer. I know it is natural to enjoy the particular things that my children have learned how to do. There is nothing wrong with a mother's gratitude. Indeed the sin would be not to appreciate the gifts bestowed. And yet.

After reading Elizabeth's post, the list I had put up felt unseemly, so shallow, so lacking in awareness of the immeasurable challenges that other people face. Elizabeth asked me two nights ago how did I think the experience of her sons' leaving for college would be different for her than it was for me, since her daughter Sophie, who has a seizure disorder, would be home with her always. I felt humbled. I realized how much I live in my own small world, entertaining my own small truths. I felt so self-absorbed, and yes, apologetic, because I cannot know how it is for Elizabeth, or for Ian Brown, the father of the boy in the moon, or for any person whose life is dedicated to caring for a loved one who is disabled. And yet I am thankful, too, because Elizabeth's question then and her post today and her joy as she headed home to Sophie helped me glimpse for an instant the vastness of what I don't know. It is only a single bloom of awareness, but it is more than before.