Necessity Is the Mother of Reinvention

“The best way to find yourself, is to lose yourself in the service of others.”  ~Mohandas Gandhi

I’ve known this for some time, could always articulate if you had asked–perhaps not as elegantly as Gandhi but an iteration of it to be sure.

But when you’re in the throes of difficulties, especially difficulties related to a loved one’s health, it is oh-so-easy to forget.

When our now-eight-year-old son Edgar was diagnosed with epilepsy nearly two years ago, my life’s focus pivoted and rested squarely on him and getting him to a point where he could, if it were possible, live seizure-free.  My focus on serving others was, embarrassingly, not even on the back burner.  It was farther away than that, much farther.

I wish I had remembered Gandhi’s words if not for the good they would have inspired me to do for others but for the ultimate good they would have done for me.  But I didn’t.  I could think only of my son.

Enter The Matty Fund, Rhode Island’s only epilepsy resource center.  Led by Richard and Debra Siravo, who lost their beautiful son Matty to epilepsy ten years ago, I stood in awe of what these two heroes among us were able to accomplish in the wake of such profound tragedy, not realizing that I, too, had the potential to make a difference.

Never ones to rest on their laurels, they sought last spring to expand their Discovering My Epilepsy Support Groups throughout Rhode Island and wanted to include Newport County, my particular stomping ground to be exact.

Photo Credit: Newport Daily News and Dave Hansen

Photo Credit: Newport Daily News and Dave Hansen

This Friday our first support group for families affected by epilepsy will be held.  It will be facilitated by Bethany Gilpin, mother to, coincidentally, an eight-year-old boy with epilepsy, and me.


Me, the mother of a child who still fears for her son’s safety, who still, whenever an ambulance goes by wonders if it’s for her son, who is still negotiating medications and trips to the neurologist, a mother who didn’t realize she had something to offer to others because she is still exhaustedly and exhaustively climbing this hill.

I think if you had asked me two years ago if I would have been interested in facilitating a support group for families living with epilepsy, I would have thought about it, understood the benefit of it, but would have concluded it would be best to wait until Edgar’s epilepsy was no longer the visceral daily factor it still is–once he was medication-free, no longer under the regular care of a pediatric neurologist, once he had “outgrown it,” once, to paraphrase Gandhi, I had “found myself.”

But when your child has epilepsy, you can’t sit around waiting to “find yourself.”  After your child’s first seizure, you realize how quickly and unexpectedly life can change; so, rather than waiting to find yourself, I have learned these last few weeks, the best course of action is to keep reinventing yourself and pushing yourself to depths you didn’t know you possessed.

The Siravos do–and in word and deed (and sometimes with a gentle nudge) inspire others to do so as well.  Thank you, Bethany, for joining me on this phase of my journey; and thank you, Richard and Deb, for knowing so, so much . . .


2 thoughts on “Necessity Is the Mother of Reinvention

  1. And the cliche rings, “If you want something done, ask a busy person.”
    Service is in the DNA of every teacher worthy of the word.
    Life is too short to wait for the right time to do anything; when you think, you do.

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