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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.

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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.
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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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Wishing my dearest Drama Mama a very happy, happy birthday!

I tried to get the video of your recent party to add here but…funny…it was missing! I hope you enjoy this instead. (It’s “family friendly” but very funny!)

Here’s a loving wish for an awesome day for an awesome lady.

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…otherwise known as an update on Nik’s friend N and his family.

I am happy to report that N’s mother, M, has shaken off the deer-in-the-headlights demeanor which was in full force on Saturday night. Apparently, my mentioning that there was still no speech therapist at her son’s school —Nik’s old school —was the first she had been informed of the fact. It took a few days for her to digest the information, formulate a plan, and take action.

While she was simmering, stewing, and plotting her moves, I took the liberty of speaking to Miss K, the speech therapist at the place where Nik has his OT, PT, and playgroup; she is the former school SLP who knows N very well. She was quite disturbed to hear that the school administration hadn’t at least informed the families that there was no SLP or made any arrangements for per diem coverage or anything. She told me to tell M that she should contact the school principal and ask him to arrange compensatory services immediately.

I called M today to pass along this information; my timing couldn’t have been better! M was, in fact, on her way to the school to corner the highly elusive principal. It seems she’s been getting the runaround about an appointment and had enough. Can’t say I blame her; Niksdad and my experience with the “new” principal left a bad taste in our mouths and I have heard from multiple sources both inside and outside the school that he has shown his true colors as a “master manipulator” and politician who doesn’t spend much time actually in the trenches of the classrooms and satellite sites. We’re not talking a large operation here, folks; there are four sites total and fewer than one hundred students involved. It makes me sad and angry but there is little I can do about it except file away the knowledge for future dealings with him, if necessary.

Anyway, M was on her way to the school and ready to spit nails in the form of going to the school board, filing grievances, etc. The only fly in the ointment as far as she could see was the fact that she had her daughter, S, with he and was concerned about how to stay focused on the issues at hand. Turns out her husband had to attend a chemical warfare training in preparation for his upcoming deployment; just hearing the phrase “chemical warfare” made my heart skip a beat —not in a good way. I immediately offered to take S for her; I didn’t know what it would look like or how Nik would handle it but I knew I needed to do that for her —and for N.

So for a couple hours early this afternoon I got a small taste of what it would be like to have two kids in the house! Now, I know that when you have a second child there is all sorts of adjusting that happens gradually; I’ve not yet heard of any child emerging from the womb already walking, climbing, and eating Cheerios or Goldfish crackers! None the less, it was a fascinating and daunting experience for me.

Nik was in his chair having his lunchtime tube feeding when they arrived. S was content to sit on the floor and play with Nik’s toys while Mary Poppins played in the background. Nik, by and large, wasn’t terribly interested in what this pint-sized carrot top was up to —until she climbed aboard his beloved musical scooter. Um, I guess I need to work a bit on his sharing skills; he responded by shaking his head and saying a very emphatic “NG-NG-NG-NG-NG!” and having a near meltdown over it. S, is apparently well-versed in the art of tormenting her older sibling and merely giggled as she rode away. Poor Nik.

(Disclaimer: I do have to acknowledge that S graciously shared her Cheerios with Nik more than once. Thus proving she has mastered the art of negotiation using her feminine wiles!)

But he got his own in kind once his lunch was done and he was out of his seat; he kept taking S’s beloved pink sippy cup. Being the pampered girly girl she is, S responded by shrieking, tears, and a quivering lip as she raised her arms to me to pick her up. Yes, she walks all over her docile big brother, N, but she’d never last a day with Nik! Nik wanted to clap her hands together and she got scared. She pulled the same shrieking, “Save me!” behavior. She’s adorable but, man, she needs to get a bit tougher!

(Yes, I admit it, I am grateful for my rough and tumble son —even when he discovers fishing in the toilet as a new way to entertain himself while Mommy is at the gym and Daddy is trying to study! Of course, perhaps my daughter would be just as rough and tumble, too? A point not worth pondering as it will never come to pass. Truly, it won’t —we’ve taken care of that!))

When M returned from her meeting, she was fairly pleased with the way things went. She received promises of immediate action and authorization for compensatory speech services (as well as some other things they discussed having to do with the physical conditions of the bathroom in her son’s classroom). I told her to make sure she puts everything in writing and to not trust blindly that school will do what the principal says will be done without committing it to the record. (What can I say? I am a tad jaded after our experience with the same school and same principal!)

So there you have the update on N and his family. By the way, M asked me to pass along her thanks for the prayers and good thoughts for both the school situation and for her husband’s upcoming deployment.

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Last night, we went to a birthday party for one of Nik’s old school mates, N, who just turned seven. It was a pizza, cake and ice cream kind of party; the first party Nik has ever been to outside of school which didn’t center on a holiday or being with extended family. We didn’t know who was going to be there or what to expect; we prepared for the worst in terms of Nik’s ability to handle a potentially overwhelming situation.

Armed with a small, soothing musical toy to which Nik has lately gravitated, chewy tubes, goldfish crackers — and a ready excuse to make a hasty exit with a small boy who had not napped — we set of to explore this new horizon. While I can’t say it was a perfect evening, it wasn’t anywhere near the disaster we had prepared ourselves to face. Other than an early incident of Nik, um, “watering the floor” when we changed his pull-up, there were no tantrums, no wild racing around the room in search of things to throw, no episodes of head banging.

In fact, Nik was quite content to play with the large number of developmentally appropriate toys which belonged to N’s little sister, S. Nik spent a great deal of time playing with a shape sorter (his favorite non-musical toy, I think), some small cars, blocks, and pushing around S’s little shopping cart. Ever the inquisitive clown, Nik tried to get into the shopping cart with less than stellar results; one must give him credit for knowing when to give up the fight.

The gathering was an eclectic mix of adults and children —mostly co-workers of M’s husband, who is in the Air Force, and their children ranging in ages from 16 months to 10 years old. Things were very low key; the kids all played with whatever toys they wanted to while the adults socialized. Being the only non-military family there, we felt a tad awkward at first but Nik took care of that by grabbing the hands of whomever was closest to him to clap; like his Nanny, Nik’s never met a stranger he didn’t like. Every so often he would disappear up the stairs and one of us would have to chase him to keep him out of mischief.

Nik and N were in school together a year ago. In fact, the last time I saw N and his family we had not yet pulled Nik from school. Nik was on the verge of walking and N was in the process of getting his Dynavox. It was an exciting time for both our families.

I was eager to see N’s family again; his mother had been one of the only mothers to reach out to me when Nik started school. Her friendship made the struggles of adjusting a little bit easier. I was anxious to see N in action with his cool Dynavox —the one his mother jumped through hoops to make happen over the summer —and to hear about the progress N has made in his new placement in a smaller class —roughly a third of the size of the preschool class he had shared with Nik. I was excited about showing off all the changes and progress in Nik, too.

Nothing was as I expected; I came away feeling very sad for M and her son. It turns out that the school has not only not hired a new speech therapist to replace the one that left in the beginning of September (after taking off the entire summer, too), but they had not told any of the parents about it. Poor M was nearly in tears when I asked about N’s Dynavox and how it was going. It seems that no one is using it at school and there is no consistency from school to home so N has regressed to randomly touching buttons to hear the sounds and has not made progress toward developing any meaningful way of communicating.

Niksdad and I both started to give M some coaching about what she could or should do but I could see that she was just too overwhelmed to take it in. In addition to her sweet son, N, she has a spitfire little girl of 16 months old who runs her ragged. On top of that, she is a military wife —which is only relevant because her husband is being deployed to Iraq in less than three weeks. He will be gone for six months as he coordinates and runs transport operations for daily troop movements. To say M is anxious and hanging by a thread right now would not be an understatement.

I feel so bad for her and want to try to help in some way. All I can offer her is compassionate understanding and information. I truly think that N is somewhere on the spectrum. (As many of us often remark, “We recognize our people.”) He is sweet and docile, completely non-verbal, perseverates to the extreme over any and all wheeled transportation —to the point of nearly being hit by a car on several occasions because he was so absorbed in watching it that he walked into the street to get closer —and he has significant oral motor issues with lip closure, drooling, and tongue thrusting. His gait is incredibly uneven —it has actually been described to me as a “Frankenstein walk.” I say I think he is on the spectrum because he has not been diagnosed with anything like cerebral palsy or any genetic disorders.

Yet N has never been evaluated for autism, let alone diagnosed, by either medical or educational professionals. This is, to me, the greatest travesty. Here is a child who can program his neighbor’s television remote to translate into French but who cannot communicate in a way anyone else —including his parents —can understand. Who clearly understands what is being said to him and responds more or less appropriately, yet no one at school has ever suggested that he be evaluated for anything beyond his current classification of “developmental delay.” I suppose I shouldn’t be too surprised; if he is placed into an autism program the school loses the funding they get for warehousing him five days a week.

On some level, I think, M knows this, too. N’s IEP is coming up next month and she hasn’t the faintest clue about what is in his IEP and how to advocate for what he needs. I think she is afraid to look too closely because she doesn’t want to see what is right in front of her. M did say she really wants to get N out of his current school; since they moved he is eligible to go to a different school in another district. I urged her to lobby for the change of placement immediately.

I feel so sad for N and his family who don’t know what to do for him. And I feel such a profound sense of relief and comfort with the choices Niksdad and I have made for Nik. There but for the grace of God…

Knowledge IS power.

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