I got the news on Thursday that Vicki Forman's son Evan died very suddenly and unexpectedly, and I have been reeling since the moment I hung up the phone. I recognize the feeling, because it's one I've had before. I am grieving.
In many ways, I hesitate to put the word in writing, because as soon as I do I think "Who are you to grieve? Vicki and Cliff have lost a son. They are grieving. You are an intruder in their grief."
And yet, I feel it. I carry it: the heavy ache of grief. So I give myself some space for it. I think, "Okay, grieve if you must. But grieve quietly. Grieve privately. This is not your story to tell."
But here I am - writing, because it is what I do, how I make sense, who I am.
I've realized something in this grief: I've realized that I loved Evan. I didn't just read about him, know about him, and grow fond of him. Though I never touched his skin, never heard him sing, and never saw him swing his cane, I loved him with a fierceness that shocks me.
This realization leads me to another: there are many children - so many children - whom, through blogging, I have come to love with this same intensity, this same ferocity, this same wholeness of self. And I am suddenly, painfully, acutely aware of the number of people whom I might not recognize on the street, but who have become woven tightly into my life and into my heart. That awareness frightens me.
It's frightening to know so suddenly and with such absolute certainty that I am this vulnerable, that there are this many people who could trigger this sort of pain and grief in my heart - that there are so many stranger/friends who have become a part of my family.
And then, there's another awareness, another realization, that sidles in to coexist with the fear, as my brain follows these thoughts toward a logical conclusion: If I feel this way about these children, I think, then there must be some stranger/friends out there who feel the very same way about Bud.
I never really understood that until now. I knew people were cheering us on. I knew people recognized Bud's charm and wit and engaging personality - but now, as I grieve the loss of Evan, I recognize that for some of you, your connection to Bud - to us - is something entirely different. Now, suddenly, coexisting with the vulnerability, there is strength; with the fear, there is assurance; with the grief, there is joy.
I am reminded of something that Vicki wrote last year:
Many of my friends who have children with special needs will testify to the profound need we sense for that child to be on this planet, teaching us about love. I have felt that with Evan, and I've seen that with others. These children show us how to open our hearts in ways we never knew were possible. Perhaps that makes our hearts stronger, braver, or kinder. Or perhaps our hearts are simply, by virtue of being open, wider and more expansive.
But inside this wider space we have discovered that amidst the love there is also the heartache, and within the heartache, the joy. The will to live and the will to love.
And I am reminded of Evan, a little boy with an enormous spirit. A boy I loved.
And so I grieve, openly, out loud and in writing. I grieve with love and with heartache, and I struggle to search for the joy hidden within it.
And somehow, my stranger/friends - somehow I have a feeling that maybe you do, too.
Contributions in memory of Evan Kamida may be made to:
The Pediatric Epilepsy Fund at UCLA
Division of Pediatric Neurology
Mattel Children’s Hospital at UCLA
David Geffen School of Medicine at UCLA
10833 Le Conte Avenue
Los Angeles, CA 90095-1752