It's taken me almost two weeks to write it, but my new friend Vicki Forman's (little boy Evan died unexpectedly just before his eighth birthday. If you don't know her, Vicki is an incredible writer and advocate for the special needs community. Her writing is beautiful, inspirational and always honest. Evan was a micro preemie and had several serious disabilities, including seizures and blindness, but he was full of happiness and life and love. I never met him but knew from Vicki's writing that he was an excellent musician, loved swings and had a brilliant smile. I found out that he had died when I logged online after a grueling trip to the east coast. It was around midnight east coast time, and it was the first email that I received from a mutual friend. "My God," was all I could think. And I thought it all night as I lay next to my own special needs daughter. I've been thinking it off and on for two weeks now, marvelling at Vicki's ability to continue to write and even inspire a huge community of parents of special needs children. We are a tribe in many ways, bonded one to another by much that is unspeakable. I know that I look over my shoulder daily, nightly, at the spectre of the unspeakable. I whisper about it to my friends who have children like Sophie and not like Sophie. Evan's death, though, is not about me or about Sophie.
I have two typical children and I know that when I hear of a too-early death, I clutch them closer, grateful that mine are here and now. All parents know this conflict of relief and great understood sorrow. It's different, though, for those of us in the special needs community. When one of us is lost, we all grieve differently. There is no relief. Evan is gone and we perhaps don't know, yet, the sorrow of Vicki and her family, but we are closer to having an inkling. I am hard-pressed to articulate this and fear presumption. I am humbled by this woman and her family and their grace.
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