lost to me

From time to time, and more often than I’d like—though simultaneously cherishing the feeling—I am confronted head-on with my loss, the loss of what could have been but will never be.

Sometimes simple moments appear and move past me, like the toothless little girl, skipping in rubber boots with her father saying to him, “it’s not mud, it’s watery dirt.” Other times it’s a young toddler sitting happy and confident, bobbing on his father’s shoulders. Still others might be crisp college-bound kids with skinny necks, neatly dressed, strolling slowly arm in arm with their parents down a tree-lined campus path.

These images, and untold others that I encounter every day, are reminders of what I will likely never experience with Calvin. In the beginning, seeing them was difficult to bear and I’d run for cover, sheltering painful sobs in my sleeve. Then I gradually realized, over many years, that life wasn’t going to stop for me. It would keep going on around me whether I liked it or not. Babies would be born, they’d learn to crawl, to speak, to ride bikes, to read, to one day have sweethearts, and so on. These are things to celebrate even if it isn’t my child who’ll be doing them, I say to myself. My brain now acknowledges this, though my heart has had trouble keeping up.

A young man I met briefly a few years ago, a former student of Michael’s, has reacquainted himself with us after my invitation to help me on a project. He came up from New York and spent a low-key weekend getting to know Calvin and hanging out with us in our home. He was simply a delight, courteous and thoughtful.

When the weekend was over, as I drove him to the airport, I embellished emotionally on Calvin’s birth and epilepsy. At the drop-off curb, I got out and hugged my new friend farewell. I was sad to see him go. As I drove away, a sting of sorrow, intertwined with a warm happy glow, twisted and tightened around my heart. I realized that this young man, who a handful of years ago was just a boy, was young enough to be my son. What a wonderful son he must be, I thought. My mind flooded with so many images of things lost to me because of Calvin’s circumstance, images that layered at first like a collage and then became a sorry stack of one faded snapshot after another in a chain link reaction of loss over time.

But then, I thought of him again, the young fellow, and how he has become a part of my life, if only for a moment. I feel so lucky for my fondness of him and for the mere fact of our meeting to exchange ideas and emotions. My loss has taught me to take nothing for granted and to see, with utter clarity, the gifts bestowed onto me by others. Perhaps what has been my greatest loss—Calvin’s lack of thriving development and well-being—will be in some weird and wonderful ways also my gain.

Though if I were asked, I’d always choose a healthy Calvin who could make some other mother feel the same way that my new friend has kindly made me feel.

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Give to cure epilepsy: http://www.calvinscure.com

Originally published 2.21.2011

May 2006 just hours before one of Calvin's first few seizures


  1. Christy I stumbled upon your blog when looking for an emotional story for a graduate nursing project I am working on. We are creating a power point, for private class use, focusing on staff in-service on epilepsy. I was looking to gain your approval to use your header photo and a small bit of your story in this presentation. This presentation will only bee seen by the instructor of the class and the other members of my group. If you are ok with this could you please email Jaimi at rnjameleon@gmail.com?

  2. I am so glad you have the capacity to see and relish this enriching experience despite, no, BECAUSE OF your loss. It makes things MORE THAN they would have been, and to realize it is a gift. I am again in awe of you, Christy.