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I still struggle to find the words not only to describe but to comprehend the unspeakable loss of Evan Kamida. I first “met” his mother, Vicki Forman, just over a year ago when I found her essay, The Mother at the Swings, through Mom-NOS; it was Vicki’s first essay at Literary Mama. Her words struck a chord with me and I wanted to find out more; I was instantly drawn into the stories she shared of her family and, especially, her beautiful son, Evan.

Vicki’s story touched me on so many levels; some of the parallels between our sons’ situations made me feel an instant kinship with her and a deep, abiding affection and admiration for Evan. Like my own son, Evan overcame some incredible odds to share his spirit with the world.

I found myself often looking to Vicki and Evan for some insights about how to handle something with my own son. Sometimes, I simply turned to them for inspiration when things seemed tough. With each post, each email exchange with Vicki, or each beautifully crafted column she would write for Literary Mama —I became enthralled. I felt a closeness to Vicki —we have some commonalities in our past, but I fell in love with her beautiful boy.

Each day, thanks to Vicki and Evan, I try in some small way to remember that the “other” moms —the ones who may be watching in the grocery line as my son begins to bark like a puppy and clap his feet in a rhythm opposite from his hands —may not be judging us. Rather, they may simply be curious but afraid to ask; we special needs moms can be a bit on the tetchy side if you catch us unawares.

Each day, I will remember the indomitable spirit of Evan Kamida and I will draw strength from the pain and uncertainty; it is what Vicki and her family would would want us to do. To do anything less would diminish the memory of Evan and all that he gave us in his too-brief life.

Today, at 11:00 a.m. Pacific time, I will light a candle in honor of Evan’s bright and beautiful spirit, I hope you will join me in honoring and celebrating his life and gifts.

********************************************************

If you’d like to express your support of Vicki and her family in a more visible way —or if words simply elude you right now, I hope you’ll contribute to our photo tribute on Flickr. Just take a picture of flowers at the swings and post your own.

Evan loved to swing; I imagine he is soaring now.

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There are no words

In loving memory
Evan Kamida
July 30, 2000 – July 24, 2008


High Flight
by John Gillespie Magee, Jr.

Oh, I have slipped the surly bonds of earth,
And danced the skies on laughter-silvered wings;
Sunward I’ve climbed, and joined the tumbling mirth
Of sun-split clouds…and done a hundred things
You have not dreamed of…wheeled and soared and swung
High in the sunlit silence. Hov’ring there,
I’ve chased the shouting wind along, and flung
My eager craft through footless halls of air.
Up, up, the long, delirious burning blue
I’ve topped the windswept heights with easy grace
Where never lark, nor even eagle flew.
And while with silent, lifting mind I’ve trod
The high untrespassed sanctity of space
…put out my hand, and touched the face of God.
*********************************************
ETA:
Services for Evan have been scheduled as follows:

Public viewing: Monday, July 28th 5 -7 pm
Memorial: Tuesday, July 29th 11 am
Cabot & Sons Mortuary
27 Chestnut St
Pasadena, CA 91103
(626) 793-7159

In lieu of flowers, please send contributions 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

Please spread the word.
To express your condolences please go here. (Comments now closed on this blog post.)

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Don’t lose your way
With each passing day
You’ve come so far
Don’t throw it away
Live believing
Dreams are for weaving
Wonders are waiting to start
Live your story
Faith, hope & glory
Hold to the truth in your heart

If we hold on together
I know our dreams will never die
Dreams see us through to forever
Where clouds roll by
For you and I

Souls in the wind
Must learn how to bend
Seek out a star
Hold on to the end
Valley, mountain
There is a fountain
Washes our tears all away
Words are swaying
Someone is praying
Please let us come home to stay

If we hold on together
I know our dreams will never die
Dreams see us through to forever
Where clouds roll by
For you and I

When we are out there in the dark
We’ll dream about the sun
In the dark we’ll feel the light
Warm our hearts, everyone
If we hold on together
I know our dreams will never die
Dreams see us through to forever
As high as souls can fly
The clouds roll by
For you and I

If We Hold On Together ~ James Horner (recorded by Diana Ross)

To the friends of my heart, let’s hold on to one another in the darkeness as well as the light.

Sweet peace, little man. Sweet peace.

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It’s not my story to tell but one of our own needs some serious prayers tonight as her little boy is going through emergency surgery. Please just say a prayer for the little boy who’s in surgery right now. God will know who you mean, I’m sure of it.

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Tonight it feels like I can’t catch a break even if I used a net.

My wunderkind is down again. A dear friend emailed me yesterday “apparently no one told Nik he has special needs.” Apparently no one told him he was sick, either.

Today was a bumpy day after a bumpy night in a string of bumpy nights. Then the wheels fell off the bus. Nik broke out in a very fine, pinpoint raised red rash on his back, his feet and ankles, his arms, under his arms…

What’s a mother to do when her child is on so freaking many meds and has multiple medical diagnoses? It could be from the antibiotic —unlikely as he’s taken this one many times with no side effects, but you never know. It could be —waaaay scarier —a rash caused by one of his seizure meds. We talked to our awesome neurologist this evening (he even gave us his cell phone number!) and he told us to stop the medication entirely. Not something that is normally recommended with this kind of med but he wanted to err on the side of caution as the alternative could be, um, potentially permanent.

Then again, it could be something viral like roseola. Or, possibly, something else entirely.

Yeah, Niksdad and I really relish the idea of spending a sunny, beautiful Saturday traveling to the hospital to have someone that doesn’t know anything about Nik tell us, “Um, well, we’re not really sure…” Yet, we have to cover all the bases —just in case. Nik’s fooled us in the past and it hasn’t been fun.

There’s a little more to the story but I don’t have the mental energy to try to tell it. Something about the increase in all the icky “mysterious pain” behaviors and the angst of watching my son struggle so. I tried to tell him tonight, as he cried and pulled me to him —clinging to me like a monkey —that his Daddy and I are trying really hard to make it all better. I think he understands that; I hope he does. My heart aches and I am frustrated.

Can’t we just deal with one stinkin’ thing at a time? ARGH!

And have I mentioned that I’d sooo much rather be at BlogHer with Susan, Kristina, Vicki, Jennifer, Kristen, Jordan, Stimey, and a bajillion other potential blogging friends? Or DisneyLand with my pal, Drama Mama, and her awesome girls?

*sigh*

(Thanks in advance for the prayers and warm thoughts.)

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In the interest of full disclosure —and trying to be a responsible parent and blogger— I do need to clarify something about yesterday’s post.

What Niksdad and I chose to do in taking Nik swimming was not wise and definitely not recommended practice. In fact, someone —whose opinion I value and who has professional experience with things of this nature— did contact me offline to remind me why it is generally not a good idea to take a child swimming after they’ve been sedated. This person reminded me of the lower muscle tone often found in autistics and the sometimes barely noticeable muscle weakness and sedation which can continue to have an effect up to 24 hours later.

I am not posting this information for the purpose of self-flagellation; at the time we made the decision it did seem like Nik was fine and we were extremely cautious with him. He never left our grasp and we didn’t let him get too rambunctious; we focused more on the pressure of the water and its soothing sensory effects.

However, my blog friend’s very sage advice also reminded me that anything can happen in an instant. I like to think that I am careful and diligent but you just never know what can happen.

So, the next time I want to take Nik swimming after sedation, maybe I’ll just sit in the bath tub with him. He’s too precious to risk.

And to my “meddling” friend (you know who you are)… thank you for caring enough to contact me. Friends don’t let friends parent irresponsibly.

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For Drama Mama…because I love you. You touch so many lives with your fabulousness, your insights and emotions, and your incredible girls.

If I were there in person to give you a dozen long-stemmed roses after the encore…but I’m not. So instead, I give you this moment of lightheartedness to carry you through the day.

Break a leg, darlin’!

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