We lost our precious lil' love to AML Leukemia on March 8, 2010. As an incredibly strong family unit, we fought this horrid disease for 2 1/2 years........only for it to come back a fourth time to finally claim Hunter's life. Zen and I are truly devastated and the beautiful light that used to brighten our days and enhance our souls, no longer exists. Our hearts are truly and forever broken. We have a long journey ahead of us, but we are committed and devoted to surviving and living our life embracing Hunter's amazing spirit. With tremendous honor, we will carry on his legacy of love, his legacy of courage and his remarkable ambition to live strong, live fearlessly and live with passion.

You will remain forever in our hearts baby love. We carry you with us every moment of every hour of every day.

Wednesday, March 12, 2014

Grief...it's whats for breakfast, (with a side of something spectacular)

Definition of grief - Deep mental anguish, keen mental suffering, distress over affliction or loss, sharp sorrow.

hmmmmm...that just doesn't sound all that appetizing.  At least not to me.

However, since I've lost Hunter......it's whats served for breakfast every single morning of my brutally-altered life.

That's a pretty powerful state of emotion & existence to wake up to and choke down every single day.

So I've decided this...

I've decided to take what's been served to me, (this lovely grief-breakfast of mine), and on any given day I'm going to fry it up, boil it up, poach it up tenderly...scramble it up, take it deviled, or maybe even on some days - drink it down raw.

And however I choose to drink it, choke it or gobble it down, I'm just going to make sure that it's something I can stomach.  And then on top of that, I'm going to try to make the choking and gobbling down as pleasant and as enjoyable as possible.  And then once I'm finished with that,  I'm going to add that side of spectacular.

And that side of spectacular for me is Hunter.  It's his contagious giggle, it's his signature wiggle, it's his ever lasting inspiration.  It's his marvelous coolness, his delightful love, and his rock star personality. It's his legacy. It's his amazing life, it's his magnificent soul, it's his undying spirit.

It's him.  And to me, he's as spectacular as it gets.

And that somehow allows me to stomach as much grief as I can take. And as you can imagine, the plate can be pretty enormous sometimes.

I'm grateful that grief changes...every day is different.  And I know deep down inside, in my heart and in my mind,  I truly have the ultimate power to work with it.  I can morph it into different ways to consume it that make it most agreeable for me and my state of mind.  On some days I can choose not to have any and on some days...it's just essential.  I don't fight it, that seems a bit too exhausting.  At times I do welcome it, simply because a painful ache can feel like home.  However,  I definitely don't like it - sincerely not a fan, but I do consider it my life-long friend......since we will be together until the end.

Grief stares me in the face every. single. day.

I lost my lil' love.

I lost a huge piece of my life.

I lost a tremendously huge piece of my heart.

I lost my child.  And he was a Rock Star.

So because grief stares me in the face every single day.

My lil' man is going to rock-it-out and brilliantly dance-it-up on my heart every. single. day.

Griefs got nothing on me except acknowledgement.  I respect it, I understand it, I'm going through it. But it won't take anything more from me then what's already been taken, it won't define me and it definitely won't defeat me.

I will never run away from it...seems a bit too far and never-ending.  So since it's so close, guess I'll just just put my head up and run straight towards it.  I will always welcome the challenge.

And now that I have this extremely powerful Angel wiggling and dancing and giggling on my shoulder...I feel slightly unstoppable, in a very "Hunteresque" kind of way ;)

Oh and back to my delicious grief-breakfast......I'm pretty sure I prefer sunny side-up, almost always, and I actually prefer to take whatever else I don't want and choke it down or gobble it down with a spectactular smile.  It's the only way to go.

Our Journey

Saturday, September 15, 2012

Sweet dreams are made up of lil’ loves…

It’s been months since I’ve had the sweet, sweet pleasure of seeing Hunter in my dreams. I’ve been waiting and waiting and waiting…and waiting. Still keeping “Henwy” the train under my pillow, 2 ½ years later, thinking Hunter would come back for him at some point. Still squeezing Lighting McQueen tight before I sleep, thinking he’d want to come and get a squeeze in himself. Still smooching his sweet face every night, trapped in a photograph, thinking he’d want to come and smooch me back. But he’s nowhere to be found. No signs, no whispers, no tickles…no giggles.

Until the other night. And it was oh so brief. Went by in what seems like the blink of an eye. But I saw and held and cherished my lil’ love for as long as that brief moment existed.

I had spent the last 4 hours before bed searching for original images for Mike Gillette, who is producing the amazing documentary, TheTruth365. I revisited images that used to keep me up at night…images that hurt. Images that are too dreadful to take in and fully process…without leaving me mentally damaged for hours or days on end. Zen was on an all night shift – so there I sat, all alone, curled up on the couch…remembering our sweet lil’ love. It was an excruciating process. My heart was beating so fast at times…causing pain and a severe ache throughout my entire being. But I wanted…and very much needed, to go there. I wanted to be taken away to the life we once lived. I wanted to breath in Hunter and all of his charm and amazing energy and gentle expressions. I wanted to consume his sweet soul and every little, last morsel of goodness I could bear to witness. I watched a good bit of his videos and looked at hundreds of images of him and our time spent together, and felt this incredibly heavy desire to just jump back into this life and live there forever.

Looking back through our life with grief-aged eyes, I literally saw the cancer, hardheartedly, take my lil’ love away. I saw his lil’ light slowly flickering towards the end, until his light was out. I saw my glimmer of hope that used to be so powerful and bright, and kept me strong for years of his intense battle, slowly fade away.

I saw his strength, I saw his courage, I saw his innocence. I saw the love. The never-ending true love that he gave us. And the never-ending true love that we so willingly and wholeheartedly gave back.

I saw the cancer. I saw the beast that gave us no mercy…the monster that haunts me in my nightmares. I saw this incredible force that, uninvitedly, enters my thoughts…without warning, without gentleness, without grace.

I saw sweet and palpable affection. I saw terror. I saw pure enjoyment and delight. I saw sadness. I saw tenderness and a passion for life and love. I saw pain.

I never once, however, saw anger. Anger that you’d think would have built up so intensely and so fiercely and so profoundly, that it would have caused us to self-implode.  I am extremely grateful that we, knowingly, compartmentalized that emotion onto the shelf of wasted time. Time that, unbeknownst to us, was going to be so incredibly limited.

I’m grateful that we spent our time laughing and playing and loving as if nothing in our life was ever wrong. I’m grateful that we lived each day with an abundance of joy and appreciated the time we were granted, and considered each and every moment an absolute true blessing. I’m grateful that we spent our time embracing his beautiful presence, as if he was never going to die.

Thank you Mike and TheTruth365, for triggering the thoughts that brought my lil’ love back to me - even if it was for just a brief moment. It was a moment that I’ve needed…a moment that I’ve been longing for, and a moment that has given me a little boost of strength to continue to move forward.  A moment that is now forever embedded in my memory that I can access whenever I need my sweet lil’ Hunter embrace.

I am forever grateful for any time I now get to spend with our amazing lil’ love…who is now, eternally, in my sweet, sweet dreams. Cheers

Hunter Zen, featured in TheTRUTH365
A documentary and social media campaign
that gives a voice to kids fighting cancer.

Lenore, Zen and Hunter Featured in Day 2 of The Truth 365's
Social Media Campaign.

Monday, January 24, 2011

The Nuts & Bolts.......and Truths

Hunter's Ashes

When I think about my life and the path that it has taken so far....I'm quite surprised. I never thought I'd be the tortured poet....writing and divulging and painfully expressing all of my agony and sadness.......trapped..... and now somewhat bi-polar.......and yet, here I am.


This last year has been the most difficult year of my life. I've never been one to throw in the towel and call it quits or walk away with my tail between my legs - but the last 12 months have been excruciatingly painful and overwhelmingly sad for me. I've crumbled to the floor and sat in a pool of tears time and time and time again. Everything about my being has been slightly altered and it seems as if my body remains a jumbled up puzzle that is forever missing a piece.

My mind is definitely not the same. Seems to be more spacey.....still very hard to focus sometimes. Painful, disbelief of what we've lost continues to settle in more and more every day that passes. It's weird how sometimes it feels as if my memories are all just a dream. So foggy, yet really, really, REALLY clear. All the nights in the hospital and in the ER, all the procedures, all the excitement when traces of the cancer were gone, and then all of the terrible, crushing, gut-wrenching blows each time the cancer returned. Three times we got rid of it, and three times it came back. Such an intense journey......such a traumatizing journey. I continue to miss him so much..........so, so much. Sincerely. I can't even put into words right now exactly how incredibly huge our loss is felt.

Hunter is forever the "boy out of reach" for me now. Constantly drifting off - further and further away. And now, I am feeling as if every day is a constant struggle and fight to keep him close.

On top of that, my mind is constantly racing to figure out how to process what's happened.....Hunter's life......his death...my life.........our life. I am always trying to find a way to process it in a way that I'll accept it - so that it's bearable. So that we can continue to live through this and not be so horribly, horribly devastated. But I keep coming back to the realization that nothing takes away that deep, heavy, sick to my stomach feeling of loss and sadness of missing him. No matter how I think about it.....I remain forever crushed.

Our days and nights are all different. Some days, Zen and I, race off to bed because we are so ready for the day that we are having to be over, and we just want it to end. And then other days, we feel as if we are dreading the moment our heads hit our pillows and we are laying there in the stillness and silence....desperately trying to fall asleep........fighting our thoughts, fighting our memories. Our minds are just going and going and going. And sometimes, sad thoughts can just start to spiral out of control.

We go in and out of depression. Sometimes it lasts for a day or so....sometimes hours....sometimes moments.....sometimes WEEKS. I've mentioned before how Zen and I are pretty good about noticing when one of us is sinking off into a puddle of doom.....we still continue to rescue each other often, and thank goodness for that. Our worlds would be so much sadder without someone there to help from ultimate self destruction.

Zen and I on his 40th birthday this year.

It's a known statistic that couples don't do so well after the death of a child. Most end up in separations. I couldn't imagine that. I couldn't imagine being without Zen. What in the world? He's the only other person on this earth that went through and endured every last bit of torture and heartache and pain that I went through....he knows the entire journey step by step and word for word. That brings me such an amazing amount of comfort. To be dealing with this alone or to be with someone who did not know that wonderful lil' boy the way I did, who didn't know all of his words and funnies and mannerisms, who wasn't thinking about him as often as I was........imitating him......remembering him......loving him.....would seem just horrible to me. We're in this together til the very, very, VERY end. Not to mention that when I'm 80 and I finally go crazy and die from a broken heart.....he'll fully understand why....his heart is just as broken and he's probably close behind.

I seem to be watching Hunter's videos more. I am wanting and needing to remember every single last bit of his lil' being....his amazing personality. He is just mesmerizing to me. Such a joy. Such a beautiful and complete joy. Just typing that and really remembering what it was like to have his sweet love in my arms just made my insides collapse. I still get that sinking, overwhelming, heart-wrenching, awakening when I allow myself to fully think about and embrace my memories.

I just found this video again. It was after Hunter's final relapse and the cancer was taking over his body. He had been very weak and seemed to be pretty tired, but somehow he got up enough energy to give it a go. It was soooo nice to see. Such a fantastic lil' dude. Always so sweet.

I find myself being very aware of our sadness schedule - together, as well as individually. I woke up sad one morning and came down to make coffee....something got Hunter in my head and I started tearing up immediately. Zen woke up in what seemed to be a good mood. So as soon as I heard him come whistling down the stairs, I immediately hid my face towards the wall and scooted off to the bathroom. I didn't want to influence his mood in any way whatsoever. Genuinely happy and sad free moments are truly appreciated now around here. They don't come around as often as we'd like. Or at least not as naturally as they once used to. So I wanted Zen to enjoy that moment and all the ones that followed. But, by the end of the day....I felt as if I was going to burst. Sadness had just been building and building all day long. We had gone out and I was sitting in the passenger seat of our car just clenching my jaw trying not to cry. Zen took one look at me and said, "Hey, how's it going over there". That's all that needed to be asked. Couldn't hide a thing. Instant crumble. We both went down in flames.

We are doing our best to remember Hunter in the most positive way possible.....but it's just too difficult still to do without massive amounts of sadness falling in on us. I feel as if he's this magnificent sparkle that guides my days and nights, yet his sparkle is always clouded by a constant flow of tears. I cannot, for the life of me, believe that it's been a year without him. It puts a year into a totally different perspective for me. A year is nothing. I feel as if we haven't even BEGUN to scratch the surface of mending our broken hearts........................not. even. close.

So far, he's now been in my dreams 10 times. Ten nights out of 365.......seems so strange to me. As I've probably said before, I guess I should feel appreciative that I've seen him at all. He was just in my dream last night for just a second. I walked into a room and there was a little boy sitting with his back to me. He turned and looked at me and that's when I saw his face and realized that it was Hunter..........and then he was gone. The 9th dream was Hunter and I by the ocean. We went to go play in the sand and get our feet wet, and as soon as we got to the waves, a bear came up from underneath the water and slowly followed us as we searched for safety. We found some other people that allowed us to come inside, but the bear remained close behind. We hid behind a wall that closed in on us and the bear couldn't reach out far enough to grab him. He was after Hunter..........and that's all he wanted.

I kept Hunter safe. At least in my dream I did. I held him so very tightly in my arms and made sure he knew I wasn't going to let anything bad happen to him........ever. That seems to be all I ever want to do in my dreams is keep him safe. It's as if I always feel the presence of a threatening danger looming above......watching.....waiting. Such a horrible thing to have lurking around.

I still don't do so well in the car. Especially when I am not driving and am just sitting over there in the passenger seat dazing off. We drive into Portland so often and there are just soooooo many memories along the way. Like the signs for the Oregon Zoo..........I still feel as if a steel fist punches me in the stomach every single time I see the sign....such heartbreaking and surreal memories exist for me there. I remember feeling painfully numb, yet having to smile. I remember staring at Hunter's sweet face wondering how much longer we were going to have with him. I remember thinking this was probably going to be his last trip to the zoo......ever. I remember how sad it was for me seeing all the other little boys and girls run around without a care in the world.......and our little boy was about to die - and there was nothing we could do about it. I remember taking Hunter out of the stroller to sit him on the tractor and he was just so sad and was not really much in the mood for the zoo at that particular moment. Just broke our hearts.....they were pretty much splattered all over the ground. I remember Zen and I both crying as we pushed his stroller trying to figure out what he might possibly enjoy next. What could we possibly show him that is going to bring a smile to his face. Finally we found it...........the larakeets. This was the most he laughed all day. He loved these lil' guys.

Hunter is Australia before his first relapse.
He's always thought birds were cool.

This was us at the petting zoo when he was in remission before his transplant. I try my hardest to think of these zoo memories when I see the sign now and not his "final days" zoo memories. These aren't as sad to have fluttering around my head......but, still sad.

I stare up the hill at Doernbechers Children's Hospital every single time we drive past it - reliving so much of our life that is contained within those walls. It's the place where Hunter lived. It's the place where Hunter died. It's also the place that kept him alive for much longer then the cancer wanted......and we are forever grateful for all of the extra days we got to spend with him. We would give anything to be back there......living within those walls........living with Hunter. Holding him, loving him......

I've walked by the room that Hunter died in at the hospital several times now. I always know when I'm walking by it. Sometimes it catches my attention and I'll look at the door and picture him there in the bed. Sometimes I fight and fight and fight for the ability to look away.

I will never, ever forget our last night with Hunter in the hospital. I remember every last detail - every last painfully, crushing detail. I'm not sure how, because I literally felt as if I was losing my mind, and nothing at all was making any sense to me whatsoever.

I hate Disneyland commercials, especially when they finish with their fantastically, happy slogan, "Disneyland, the place where dreams come true". Disneyland, for me, is the place that we never made it to - Hunter died before we could get there. The Make-a-Wish Foundation actually came to deliver our tickets when we showed up for clinic on Friday....Hunter was dead by Monday.

I still sleep with Henry clutched in my hand.....all night long.

I have Hunter's blanket that was left in our bed when we went to the hospital that very last weekend. It's the last blanket he used. It still has his juice stains on it from his night time thirst cravings when he would wake up and say....."joose. joose. mom.....joose peaze". I've used it for my tears several times now and sleep with it under my pillow. I haven't washed it yet and am not sure when I will.

I sometimes wish I hadn't been so naive. I honestly only allowed myself to believe that Hunter was going to survive. We truly did savor every last hour of every day.......down to the very last second. But, I feel as if I would have savored so much more - so much more.

I often look back at my day-timer and am just shocked at what our life was like. Everything revolved around Hunter and his care and trying to keep him alive. Wow. Just amazed. Amazed at the medications he had to take, amazed at all the trips to clinic we had to take......amazed at all the blood draws and transfusions. Amazed at all the dressing changes. Amazed at the number of NG tubes. It was seriously like living in a horrible science fiction movie that we weren't allowed to shut off.

I still frantically write down memories that come to mind. I carry around a notebook with me at all times, I have notes in my iPhone, I have notes on my computer, I have notes on my To-Do lists..........I have notes everywhere. From time to time I print them out and take all the sheets and put them in his folder. I'm hoping our house never goes up in flames. I'd lose so much.

I could go on and on and on and on about how our life has been so dramatically affected with the loss of Hunter, but it seems as if this blog posting is long enough......so I'll give it a rest. Not to mention I'm just plain tired right now of being sad.......time to switch gears.

I will leave you with this bundle of wonderfully pure, heartfelt giggles..........

Hunter's lil' brother.......Ryder Zen. He delivers delightful love and laughter constantly, and I cannot WAIT to tell him all about his fantastically, cool older brother.