Archive for the ‘grief’ Category

In memory of Evan 20090724
In loving memory
Evan David Kamida
July 30, 2000 – July 24, 2008

In honor of Evan and the gifts he brought to this world in his too short life.


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Bogey Men

I stand watch over my fitfully sleeping son; he writhes and cries out in anguished tones though his body is not consciously awake. His eyes flit open for a moment, resting upon my hands perched on the crib rail. With a wail, he reaches out to hold my hands, pulling them to his head. He sandwiches his head between my palms, wordlessly asking me to apply pressure to make his pain go away, to make it all better.

I stand thus for nearly thirty minutes —shushing and stroking his head gently with my thumbs. The height of the crib and his position —farthest away from where I am standing —make the effort excruciating for me. My arms begin to ache and my lower back throbs in protest of this ergonomic torture.

The feel of Nik’s delicate, long fingers clasped around mine reminds me of how lucky I am to feel this physical pain. I am here to ward off the bogey men which plague his sleep; he is here, clinging fiercely to his mama —his need and his trust writ large in his now open eyes which meet mine in the dim light from the streetlamp outside.

He is here.

I weep with gratitude and guilt.

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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.
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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Today I feel like crying —for no reason, for every reason. For joy, for grief long past, for frustration, for my son, for my life. I’m sure it’s a combination of factors such as sleep deprivation and hormones (gotta love PMS), but the feeling is so overwhelming that I am afraid to give in to it; I am afraid that once I start I will be unable to stop. I want to wallow but I cannot go there today. Nik needs me to not go there today. Still, I cannot shake the feeling. Maybe I need to let it out to move on.

I have read and re-read Jennifer’s post on ParentDish about her twins, Bennett and Avery. It is a beautiful post about their brotherly bond and the ways they are changing as they grow. It is also evocative of the anxiety which ensues upon coming home from the NICU with more than one vulnerable baby. It is, truly, a wonderful post. I hated it.

It made me cry —hard. Not from the beauty of Jennifer’s words or the images of her boys falling asleep, limbs tangled together. For me, it was like ripping a scab off of a wound I have buried so deep within my soul that I had nearly forgotten its existence. Nik had a twin.

Somewhere in the transition from my first to my second trimester, Nik’s twin simply vanished. Gone as if it had never existed yet I have the ultrasound pictures to prove that it had been very, very real. I was crushed. Niksdad and I had tried for so long to achieve a successful pregnancy —riding the roller coaster of infertility treatments and multiple early-term miscarriages —that we had nearly given up on our dream of our “prefect” family of four. While we hadn’t intended to have two at one time, we had just started to get used to the idea of our “red-headed twin boys” which is what we were sure we were going to end up with.

I remember crying on the way home from the doctor’s office. Niksdad gently held my hand and whispered that maybe we could try for another one after “Poindexter” was born. But I knew in my heart that we wouldn’t; I was turning 40 in just a few weeks and I had already had a difficult first trimester out of work on limited-activity disability which might as well have been complete bed rest. What should have been a period of joyful anticipation for us was, instead, a time of intense anxiety and hyper-vigilance. I packed away my tears and pain over the loss and tucked it in the back of my heart. The baby living and growing inside of me needed my energy now. Grief would have to wait for another day.

As fate would decree, that day would have to wait for a very long time. Nik was born three months early but measured as if he had been four months premature. We hadn’t known until during my delivery that I have an anatomical anomaly — a septate uterus. A thin, membranous wall divides my uterus in two; the “wall” has no blood supply. Apparently, the placenta had attached itself to this membrane as well as to the uterine wall. The result is that Nik had less than optimal blood supply throughout my pregnancy. The doctors suggest that this is the reason for Nik’s prematurity and extremely low birth weight as well as the reason his twin vanished. No one can say with absolute certainty though.

With Nik’s very premature arrival and the resulting changes in our lives —on the order of some very significant magnitude —I’ve just never stopped to look back. The intensity of the early months in the NICU and the fears of whether our dearly wanted child would even live consumed our every waking thought. I couldn’t spare a jot of energy for anything or anyone beyond my husband and our son. I’m not sure Niksdad would even want another one after all we have been through with Nik; it has been like the tempering of steel in a very hot fire. The heat is exhausting and the fear of being burned is too great.

Bit by bit, I am coming up for air and discovering that life still exists in the “outside” world though it seems just barely on some days. My not-so-baby boy still needs me, perhaps now more than ever. He needs me to help him navigate his way through his day to day world, to guide the hands and hearts of those who teach and work with him, to stand firm in the face of ignorance, pettiness, prejudice, and a tightwad school system.

Having another child is simply not an option that Niksdad and I feel we could responsibly, or in good conscience choose; I have been told by my doctor that I would be on complete bed rest and face a pretty high chance of having another premature, medically vulnerable child. While I wouldn’t have terminated my pregnancy had I known what was coming with Nik, I would not knowingly risk a second; it wouldn’t be fair to anyone involved. So I don’t think about the twin that vanished or the idea of having another child anymore —when I can help it.

Still, there are quiet moments when I am caught unaware by an invasive sadness; sometimes, it sneaks up on me as I watch Nik playing —especially if he seems bored. It is sadness for what might have been. Not Nik as a “normal” healthy toddler without disability or challenge. I can no more alter my son, nor would I want to anymore, than I can call down the moon. Instead, I am filled with regret and longing for the brother or sister Nik will never know. For the sibling who could have—might have— taken the lead and taught him things, shown him things, played games, or shared secrets and tangled limbs as they fell asleep in the dark. For the brother or sister who would also learn from Nik —about strength and dignity and courage. About loving fiercely and unconditionally. About grace and acceptance.

If it is true that God only gives you what you can handle, then I must be grateful for the gift of Nik and God’s confidence in me. Frankly, there are days I doubt my ability to give Nik what he needs and I am convinced that God got it wrong. Still, there are days I wonder why God chose only one for me. Blessings and lessons come in unexpected ways.

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This has been a weekend of extremes for me. Extreme heat on Friday, extreme rain today; preschool graduation on Friday, high school graduation on Saturday. I’ve been elated and proud and I’ve been sad and fearful. Funny, the weather almost mirrors my mood swing —or is it the other way around? Is it the weather driving my mood swing instead? Whichever it is, I feel like a human yo-yo.

Nik’s preschool class graduation ceremony was on Friday morning. No, Nik wasn’t graduating; we have at least one, possibly two, more years to go. But, I wanted to go see what it was all about. I am so glad I did. It was a wonderful ceremony full of music and dancing and celebration. Five children graduated to go on to Kindergarten in the fall. Some will go to whatever school is closest to their home; others, kids like my son, will go to a satellite program at another school in our district. There, they will be integrated wherever and whenever possible into general education programs. I have mixed feelings about it but don’t know enough information to really dissect it yet.

What I wanted to share from Friday’s ceremony was the profound sense of pride I felt for each of the kids. Most especially, though, for the differently-abled kids; in the year Nik has been at school, I have seen some tremendous changes in each of them. Each one of them has brought something special to Nik as well —a shared love of music, a gift of friendship and affection in spite of Nik’s lack of reciprocity. A special connection that only they and Nik may understand it exists nonetheless and I saw it in action on Friday.

I watched my little boy —so often lost in some feeling or thought or sensation which totally captivates his attention— clap and “sing” and dance (with assistance) and smile like there was no tomorrow. Yes, of course, music is a magical facilitator for Nik, but there was a connection with those kids that I haven’t seen before. Nik even has learned how to use a “Big Mac” button during a particular song which helps him learn his name. I don’t know if he actually knows his name yet but he sure knows when in the song to hit the button! I don’t mind confessing —I cried. A lot. Tears of joy and hope.

Fast forward to Saturday. My eldest niece, J, graduated from high school. How could this be? Wasn’t it just yesterday that she was my little lovey-lamb and I was her live-in nanny? I remember so vividly that period of now seemingly-ancient history when she was a gurgling baby then a curious toddler. I had the pleasure of living with my other sister (#2; I am the youngest of 3) and her husband and helping them out. They had both started new careers in the hospitality industry and were working crazy hours. I had just dropped out of grad school and was looking for a change, a new start and a chance to figure out who I was.

Helping to raise J for a full year changed my life. I knew, from then on, that I wanted to be a mother. A singer, yes, and perhaps a writer, too. But a mother —that was my ideal. I don’t think I ever told anyone for fear they would call me stupid or old-fashioned. Little did I know then what a supremely wonderful and important job it is.

Nik, Niksdad, and I sat in the bleachers, sweating under the warm June sun. It felt like a slice of small-town Americana brought to life. The ROTC color guard marching the flags onto the field, the slightly out of tune band playing the Star Spangled Banner, the sight of those fresh-faced young men and women in their crisp caps and gowns. It all brought tears to my eyes. I let them fall. I felt proud of this lovely young woman —my little “lovey-lamb” — all grown up and ready to take on the world. She’s turned out to be such an amazing person; I can’t wait to see the shape her life takes on as she grows and matures.

The speakers, as I imagine they might at any small-town high school graduation ceremony, rambled on. The sound system wasn’t the greatest so it was extremely challenging to hear everything they said. It didn’t really matter as most of it was reminiscences of their years together at school. I allowed my mind to wander to another graduation ceremony —one many years in the future.

I looked at Nik sitting so placidly in his stroller (wheelchair, really) with the pump running to deliver his dinner. He played quietly with his current favorite toy and clapped along with the crowd at most of the appropriate places —using both his hands and feet as he loves to do. (Nik doesn’t do anything in half measures!) He even crowed and squealed a bit, too. I wondered if he made some people around us a little uncomfortable. I got annoyed at myself for even allowing the thought to creep in. I couldn’t help it.

I tried to picture Nik in his cap and gown, walking proudly to the podium to accept his diploma. I couldn’t see it clearly and I panicked in my heart. The tears started to flow quietly and I squeezed Niksdad’s hand tightly. Try as I might to dam the tide of thoughts, they swept me away. I was drowning under my fears. Will Nik graduate on time and through the fruits of his efforts and studies or will he merely be graduated because it is time, because he has aged-out of the system?

My rational mind knows that Nik is only three and a half years old. He is incredibly smart and curious and has responded well to nearly all interventions thus far. I have no logical, reality-based reason to fear for his future. And yet, I do.

I hate the duality of thought and feeling with which I constantly struggle. The exhaustion of trying to stay in the moment, of focusing on the here and now and making sure Nik gets every opportunity possible to discover, express, and reach his greatest potential —whatever that may be. The corollary to that daily reality though is the constant need to look many steps ahead, to constantly think of the future. Am I doing enough to prepare Nik for the day that will come when Niksdad and I are no longer here or no loner able to advocate for him, to teach him, to support him and cheer him on? It is not a place I can linger, this future world of shadows and inevitability; it is too draining, too scary, and too painful to imagine the day I am no longer around to love my miraculous child. I cannot linger yet I can’t stay away. Sitting in the hot June sun, I cry. A lot. Tears of fear and frustration.

My self-indulgent reverie is broken by the sound of the crowd applauding. I feel a small hand brush against my arm, seeking attention. Nik is humming “Itsy Bitsy Spider” which is his favorite song to sing with Mommy; he wants me to play. The request itself is a major milestone. I look into Nik’s innocent face —the face of my future —and bravely smile. I square my shoulders and quietly start to sing.

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There are so many days I look at Nik and think about how far he’s come and how much he’s changed. For some reason, though, there are days when I cannot seem to keep the past in its place and my emotions securely bottled away. The emotions I feel right now so closely echo those not-so-distant memories of months spent in the hospital at Nik’s bedside —watching, praying, hoping. Hoping that “this time” he’d stay off the ventilator or “this time” he wouldn’t need another surgery. The feeling of waiting for the other shoe to drop as Nik racked up diagnoses like so many frequent flier miles,

I suppose, if you are a parent of a child with multiple disabilities or complex medical or educational needs, the feelings are inevitable. But doesn’t there *have to* come a point when you get to take a deep breath and coast for even just a little while? Focusing on the known issues and/or conditions and simply dealing with the day-to-day living with them?

Nik may be sick —again. It may be “nothing”. Nothing —meaning, it is something that requires monitoring and blood tests every six months. Or, it could possibly something that could alter his life pretty significantly. We are waiting for answers which, we hope, are clear and simple and easy to deal with. I hope my gut is wrong this time or that my “mommy radar” has somehow jammed. I am not usually full of doom and gloom but I feel like I need to be prepared for the hammer blow that may come. To protect my battered spirit from another sneak attack.

Meanwhile, I pray —constantly— in spite of the fact that I am not religious. I have to hold on to the belief that there is a supreme deity somewhere with a master plan. Without that anchor, I don’t think I could make it through the dark times. The times when I am filled with such guilt and anguish and rage about my little boy’s immense challenges. The times when I am filled with despair because I cannot change life’s course for him, for us. The times like these past few days watching Nik be poked and prodded and drained of blood and energy from trips to multiple doctors, trips to the lab, and the toll it takes on him for days afterward. Not just the physical toll but the emotional and psychological one which he cannot communicate to me except in his vacant stares when he’s overwhelmed, his cries when he gets tired and frustrated, or his waking in the middle of the night. My little rock, who used to sleep through the nights so soundly, now stirs and cries out and wakes looking for company in the darkness in the middle of the night. Not that he really wants companionship; I think he just needs to know he’s not alone.

I know how he feels.

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