


Saturday, November 20, 2010

Life.......as we know it

I started writing this blog and it immediately started with thoughts in my head about Hunter. I, just now, decided to tell you about Ryder first. I don't want Hunter's absence to overshadow the amazing feelings of pure joy that Ryder has brought into our life.

Ryder is a rockstar. He lights up every single one of our days and happily carries us through to the next one. He's finally passed the stage of the "blank look" and throws down smiles constantly, especially when we get super close to his face and smile back. Which, believe me, we are in his face OFTEN, (I'm sure we look like big bobble heads to him that are endlessly craving his attention). But I don't think he's on overload yet, and so far, he doesn't seem to mind. He's a fantastic eater, in fact he eats and eats and eats and eats. I feed him and then smile, feed him and smile. We play with toys, he swings in his swing, bounces in his bouncer and we read books - usually Dr. Seuss - mostly because they make me happy and take me away to a special imaginary place. Hunter and I also read a lot of Dr. Seuss together. So good feelings all the way around.

I sing to Ryder often. This one gets sung to him a lot.......he always smiles.

"You are my sunshine.....my only sunshine,
You make me happy, when skies are gray,
You'll never know dear.....how much I love you,
Please don't take my sunshine away".

I mean every word of it.

He's a super happy baby and thank goodness for that - I honestly was a bit concerned being as sad as I was while he was in my belly. I feel like when Hunter was in my belly he heard nothing but laughter and good times and wonderful events going on in the outside world. Ryder, on the other hand, heard lots of tears and lots of silence. I did a lot of crying or thinking or writing............big difference.

When we first started introducing "big boy" toys to him, I was very careful. I didn't want to influence his choices by presenting Lightning McQueen to him first. Soooooooo, I put Lightning in front of him, as well as Elmo, so that he could make his own decision as to which one he preferred most. I am VERY thrilled to report that he went for Lightning McQueen. So SaaaaaaaWEET. That brought a HUGE smile to my face that day and made me think that Hunter would be very proud of his lil' brothers choice in toys.

He also seems to enjoy Lightning and Mater on the big screen. He gets a dose or two of these cool guys while I'm cooking.

Ryder is his own lil' being......but he does seem to have a few "Hunterisms". He's extremely observant and notices everything - especially what's in my hands. That's a HUGE reminder of Hunter. Whenever ANYONE came into the room, Hunter ALWAYS checked out what you came in with........he would check for medicine, needles, nose hoses.....he was no dummy and always made sure he knew what you were about to do. Like Hunter, Ryder also looks you in the eye with what seems like a very old soul. He seems so grown up and he's only 4 months old. He's got Hunter's nose and Hunter's voluptuous lips - which I just absolutely LOVE. And he sits and sleeps often with his arm behind his head and his legs crossed, which is just FANTASTIC. Hunter ALWAYS had his arms behind his head and his legs crossed. Two Mr. Coolios for sure.



Ryder is much more pale skinned that Hunter was - but then Hunter also got darker with the addition of chemo, chemo, radiation, chemo and more chemo. But initially, he was still more of a golden color........Ryder is as pale as a ghost.

Oh and he loooooooooves his "Hunter" blankets. We never went ANYWHERE without a few of these for Hunter. It was his special kind of blanket and it always brought him so much comfort. We now use them all the time for Ryder and he seems to love them just as much.



I know that when Ryder was first born, Zen and I both, honestly wanted to see Hunter come popping back out........we were so hoping that he somehow got back into my belly and was going to have a chance to come out in a brand new body with absolutely perfect blood. We obviously knew that this truly was not going to be the case - but we so desperately wanted to see Hunter again and let him have another chance at life. It's amazing how much we want him back home......safe and sound......away from all evils.

Hunter at 6 months. Healthy as can be........

So all in all, regarding our mental and emotional state of mind - it basically still hurts like hell and has affected us deeper than we ever imagined. We still get hit pretty hard, on a daily basis, with what continues to be our reality.

When we see videos or photos of Hunter, which is often............wow - the sadness that beats us down is pretty much indescribable. So many emotions at once. Intense heartache. An overwhelming feeling of loss. Love........deep, pure love. Happiness, enjoyment and appreciation for what he was......and the wonderful way in which he always carried himself. Sadness. A very powerful and heavy burden of sadness. It always ends in sadness. We miss our lil' love like crazy.

Usually I find myself needing to hear his voice or wanting to remember his cute lil' personality. We have videos upon videos upon videos. So it's quite easy for me to get very lost in my Hunter world. As soon as his face hits the screen and his wonderful lil' words come out of his mouth.........it's all over. It basically becomes a torture session. It is so incredibly painful to see him and hear him and not be able to touch him or hold him. I am so damn tired of gently touching his cheeks on my cold, flat computer screen.........just trying so desperately to remember the softness of his skin. I want to smooch his lil' face and grab his lil' body and snuggle with it beyond belief. My heart just aches.........painfully aches to the point of wanting to vomit. It's completely surreal. It's the biggest struggle for me to piece together what really happened and what we've lost. I just can't believe that something so amazing and so important to me and so REAL and full of love and beautiful energy.......is just gone. Disappeared into the clear blue skies. My first child.......my lil' bundle of love.......my best lil' buddy......is dead. wow. Just doesn't seem possible for this to really be my life.

It's now been 9 months since we lost him and it seems as if the pain, that we thought was going to become easier, has only intensified. The horrible reality of his death is sinking in more and more every month that passes. We've fully realized what we've lost and it's painfully crushing and so terribly heart breaking. Zen and I were talking after one of our Hunter crying sessions and I had mentioned that losing a child is the worst thing that can ever happen to anyone in their lifetime. He basically made me take that back. He said he doesn't like to think of it that way and we should try to think of it a bit differently. It makes him feel as if there is no recovery..........and that "that's it".......once something like that happens you should just throw in the towel and call it quits because you will never resurface from such devastation. I agreed with him......and would want nothing more than a different outlook on our tragedy. And I definitely don't want to feel as if we are doomed for the rest of our life. However, we are now two totally different people with many, many layers......and the bottom layer of both of our souls is a very thick layer of sadness. We now carry it with us wherever we go. It's there. Sometimes it's possible to hide it behind other emotions and laughter.......but at the end of the day - it's the layer of sadness that we take to bed with us.

Here is a very artistic shot of our tear tissues. This was our collection after watching about 30 minutes of Hunter videos. Each one was used MULTIPLE times. We now keep a handy roll of toilet paper accessible at every main area of the house.

Sooooooo I will now end this posting with the things that I am grateful for............I am grateful for another child, I am grateful for his health. I am grateful for my husband and I am grateful for his love. I am grateful for the 3 1/2 years that we got to spend with Hunter......and I am grateful for his life. I am grateful that we are able to get up and out of bed every morning........and continue living. I am grateful that our hearts still seem to beat........even though they are still terribly broken.

Zen and Ryder in Hollywood

Friday, November 12, 2010

Day at the Sea - Hunter's Song


BUY this song for 99 Cents and help support the FIGHT.

3 Options for purchasing this Cool song:

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Too Cool To Die

Love = Power,
Power = Strength,
Strength = Courage

These children fight like hell,
and they're too cool to die.



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Hunter's Dad on Twitter:


This is the MOST perfect song to celebrate the life and courageous spirit of our lil' love. Created by Simone Benyacar and Alexis Harte, they've truly captured the essence of Hunter, the happiness of his ife and the power of his love.

Please support the FIGHT:

100% of the proceeds go into the Healing Hunter Fund where they will be appropriately dispersed to the research efforts towards AML Leukemia, families touched by cancer, as well as to the organizations that so graciously helped, supported and encouraged us during Hunter's fight. We could not have done it without them and they will be forever appreciated.


How this beautiful Song came about:

A few months ago we were asked to write a song. This is not an unusual request, but it was the most difficult song we have ever written. It wasn't just any song. It was a Song for Hunter.

Hunter was a little boy who lost his battle with AML Leukemia on March 8th 2010. He was kind, brave and hilariously funny. He was only 3 1/2 years old. We never met Hunter, but we discovered his story through a friend of ours who introduced us to his parents' blog that documented his journey. Reading about his courage and looking into his eyes though pictures, we realized that we had to do something. "Something" became a song in his honor.


Now we had a goal, but that didn't make it any easier. How we could possibly write something meaningful enough to honor such an amazing boy? A very tall order indeed. After many weeks and many unfinished songs in the garbage, we finally found our inspiration.


And so, a "Day At The Sea" was born. It took us nearly 4 months to compose, record (including recording an amazing children choir), produce and mix the final version.


Thank You

Alexis Harte
Simone Benyacar

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