Saturday, July 26, 2008

These strangers, these friends, this family

It has been a very sad week.

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
22-474 MDCC
10833 Le Conte Avenue
Los Angeles, CA 90095-1752


Delilah said...

Simply beautiful.

Steph said...

What a beautiful post.

Niksmom said...

Oh, M! If only I could write half as eloquently as you! Thank you for giving voice to what so many of us have been feeling inside and expressing to one another in emails behind the scenes.

I shared a similar thought with my husband last night about how deeply others would be affected (effected? I always get them wrong!) if this were our family instead.

Our children teach us so much about the goodness of humanity if we but allow ourselves to be that vulnerable. I treasure the gifts Evan brought to those around him and the way Vicki chose to share them with us.

As much as I have come to love you and Bud, too.

It just feels right to be curled up in the corner of the sofa in your virtual living room--tea in hand, and share our grief as the strange sort of strangers/family we have become.

Cindy Ericsson said...

I think the way you have shared your grief honors this dear child and his family. Love doesn't stop, even in the midst of separation, death, or grief.

KAL said...

So lovely, so true.

Maddy said...

Thank you. Bless them.

Ange said...

very true, and stated so beautifully.

gretchen said...

As usual, you speak for me too.

I have realized how the act of writing opens us up to one another. I am often more open and honest with my internet friends (maybe I will call them internet family) than with my co-workers and neighbors. That openness leaves us vulnerable.

Selfishly, I hope that Vicki will continue to share her journey with us so that we can continue to learn from her.

for what it's worth said...

Very beautifully written. I think it is true that through our writing, our expression of ourselves and our emotions, lives and losses that we are oft time more akin to those we may not have met, than others we may share our physical lives with.
I read a bit about this remarkable lad, and I too, a complete stranger am touched by the sorrow that his family is feeling, but moreso that the community that surrounds his family are feeling.
And if the credo of 'strength comes in numbers' is in fact true, then this family is loved and supported by throngs of amazing people who will see them through many a dark night and sorrowful day.
They are blessed to have you all.
Thank you for writing this piece and for making some of us on the outside aware of an amazing little man and his amazing mother, father and sister.

Drama Mama said...

How do you do it? How do you say exactly what I feel? Thank you for putting this into words. Thank you.

kyra said...

beautiful. yes. i feel the same. the same.

Stimey said...

I know just what you mean. This community we have here is more than just that of a writer to readers. Although I do not know most of my virtual community, I love them. And their successes and failures and loves and losses have a huge effect on me. This type of writing brings us close together and that is a very powerful thing.

mommy~dearest said...

My heart goes out to Evan's family, and to you.

Yes, there is a strong bond that we feel with our blogging friends- they're a part of our lives through the experiences we write about. I feel very close (though never have met) to a handful of writers/bloggers- Ugh- it's just not coming out as eloquently as you put it!

You know what I mean. :)

SpooWriter said...

I think it is your story to tell...because what you're telling is how Evan affected you, which obviously is different than how Evan affected his family.

But different doesn't necessarily mean less.

Also, I think talking about it like this, when Vicki can come back and look whenever she feels she is able, will be a comfort for her when she is ready.

I remember feeling very...weird...when my dad died. People expressed sympathy, and I knew they meant it, but I never had a chance to process it and come back with a response other than a pat "thank you."

Putting it in writing like this gives her that time -- to process and to reply, or not.

Hope that made sounded better in my head.

Thank you for the lovely comment, by the way. I've been trying to comment more, and this seems to have spurred me on.

@niksmom: Grammar is one of my "things" -- you got "affected" right. :-)

aspietalk said...

i read what you write with great... not quite eagerness, but i always know it will be not just well-written, but you fill me with much admiration, for what you describe. as far as the difference between online relationships and "real" life...

interesting thing about that. for me, for instance, having asperger's, i function beautifully online but am a disaster in person. so i tend to communicate with the people i care about largely thru email and our respective websites. so i don't feel quite as much a difference between online communication and RL as possibly others might.

also, i just handcrafted a present for another mother i know who has a son with asperger's, around the same age as bud. i've never met her son before, though i have met the mother. he fell so in love with the gift, his mother wrote me and said how much she loved it, and how much her son loved it... i dunno, that's kind of between virtual reality and the "real" world, is it not? few things in life are black and white, though if things are rough any human is going to want to cling to a black and white polarity.

given you keep your name and website anonymous, i could never communicate with you in person, or send you something, etc, whatever "real" people would do, and so this is largely a one-way communication, me, and many others, reading what you write. but i would be highly surprised, if you were ever to post a real-life call for help, asking for people to come to your aid... i would be highly surprised if you wouldn't have a crowd of real life people at your door, people who counted, people who really cared, and some of those people just very well develop into a real life support network. not that you need it, but we are real. =)

Anonymous said...

Lovely! Simply Beautiful!


Robin said...

Your beautiful words brought tears to my eyes. I wish that they hadn't been my first meeting of this special boy. I feel a loss in a place I never knew existed, but I am richer for letting him touch me, even if only after he was gone.

storkdok said...

Beautifully put.

La La said...

Yes and Amen. I grieve, too. This is definitely an experience of "weeping with those who weep," but it also an experience of loving deeply as you so eloquently wrote.

Thank you for this.

kristi said...

I am so sorry for their loss of a precious little boy.

I believe our kids are God's angels that he left here for us to learn to love a little deeper.

pixiemama said...

Thank you for writing this. I have never met you, never even said "hello," yet I feel a connection to you through your stories of Bud. It's true. We are a real family, even if we have never met, never spoken in person. We come to our computers to share our best and worst, knowing - not just hoping, knowing! - that people care.

Special Needs Mama said...

I am so honored to read this, and so grateful for your love. Thank you.

Janice said...

yes - it is strange, but powerful these relationships we form online. we are grieving for this family too.

Ginger Taylor said...

"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 read this and thought... 'oh my god... she's right!' We totally feel that way!

I can't even count how many times I have heard my husband tell this story about Bud in the last couple of years. We have had a huge crush on him ever since we read it and the story is one of Scott's standbys. As if Bud is a child we hang out with on weekends.

It just reinforces what powerful children these are, in all their innocent, vulnerable beauty.

Osh said...

beautiful post...

telemommie said...

I was so stunned to read this sad post. I can't imagine the world without my daughter. Some of Vicki Forman's writing has shaped the way I interact with other parents and teachers. I am so sad for this family.

I wanted to comment that I do cheer Bud on and I am so excited when great things happen to him, but I'm equally rooting for you. You are a peer and a role model that is hard to find in the non-virtual world.

Melissa said...

Absolutely beautiful.

Jordan said...

This is absolutely gorgeous and, yes, what you said. I was shocked as well, to find myself grieving openly for Evan, a child I had never met in person, and even more so to find myself leaving my family in northern CA to fly down there to be with Evan's family. Although I attempted to write about it last week, it is difficult to put into words how much it is possible to care about people we've never met. I think the support everyone has given Vicki and her family has lifted us all.

Sustenance Scout said...

Lovely, insightful writing. Even weeks later, it helps. Thanks, K.