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.



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.

Wow.

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.


22 comments:

  1. julie serafina pardeeMarch 31, 2011 at 3:27 PM

    Thank you for sharing your truth with us. I hope you have lots of support from families that share your unique pain. None of us will ever understand. I'm so sorry all the time for you. Thank you for showing up in the world every day and choosing to live, whether it's crying or being angry or being happy.

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  2. Lenore... I love getting to know Hunter through your posts, I think it's desperately unfair that he's not still here to know in person.

    You are in my thoughts and I send you love- every time I see your family's names.

    Wendy

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  3. oh love, so tough. It is weird to me that he has passed, so I can't imagine what you and Zen go through. He feels so alive to me. I still think of that movie, Heaven Can Wait, where the angel took him to early. xo

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  4. Annie Whinery - Read this again tonight. So broken-hearted. Just words I know. But I honestly have sobbed at night as I pray for you and Zen and baby Ryder. Pediatric oncology was a calling for me even before I became a nurse. When I lost a patient as a nursing student I realized I simply could NOT do it on a daily basis. Not because of the children, but because of the parents. That loss. That emptiness. That eternal ache for your angel baby. I still pray for you all. And I still cry for you too♥

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  5. Linda Fernandes Bryce - ditto!! :******

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  6. Katie Cortes - Thank you so much for sharing Hunter with us... I wish I could have met him. He was and is an amazing little soul. You know, I lost a baby almost two years ago, to miscarriage at 3 1/2 months - and haven't been able to conceive again since. I often wonder who that child would have been. I know my pain doesn't equate to yours, because you knew that beautiful soul for three years... But I think losing a child is just the most horrendous thing a human can endure. I gain so much strength from you and Zen - to see how you have coped. I love how you always surround yourself with memories of Hunter. I bet Ryder will grow up feeling as though he knows Hunter. Thank you again... You are both such beautiful, strong people! I know that sparkle known as Hunter lives on not only because he was such an amazing child, but because of you.

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  7. Lisa Fields - What a blessing to receive your truth and love, faith, trust, and presence. You are ALL an inspiration.

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  8. Kelly Roberts - Lenore, your strength, even in your weakest moments is amazing. Thank you for being so real and vulnerable. For giving all of us a reason to remember we have much to be thankful for. It's easy to assume, from my distance, that you're adapting to your new reality...what a foolish thought. I'm so sorry to have made that heartless assumption. I will continue to pray for you (for Katie C. too). It may not seem like much "consolation" but I want you to know that your story ministers to my heart. It keeps me from my own dispair (which I have no right to feel). It puts my meager problems and losses into perspective and, when I slip into my own state of sorrow it gently whispers "shame on you." Your story reminds me that what truly matters, I still have. And what I've lost, never truly mattered.

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  9. Iris Wellman - I am coming upon 4 years since my son stepped into eternity--thank you for your honesty in expressing your feelings and heart--loving you and praying for you and your family

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  10. Kelly Roberts - For anyone interested: There is a great, new book out called "Heaven is for real." About a 3 year old boy who had a near-death experience and discribes heaven. He discribes sitting in the lap of Jesus, how much God loves the children, and how he met his older, nameless sister (she was miscarried before he was born. The parents didn't know her sex, and only had a boy's name picked out). He also met his great grandpa (who died before he was born). For me, it validates the reality of Heaven, and reminds me that it truly is a "better place." Typically, I am doubtful of this type of story, but this book is different...

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  11. Mara Posa Tripi - Kelly..I just finished that book.......loved it..I have always believed that this is a "dress rehearsal"...

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  12. Kelly Roberts - Mara, Me too! I went to the website to see (in color) the picture of Jesus painted by that 8-yr old girl. His eyes are mesmerizing. It was a wonderful thought that perhaps, I was seeing the eyes that have lovingly watched over me all these years.

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  13. Linda Fernandes Bryce - On one hand...i love it when you post on Paincation....on the other..I know it is going to take me down a sad road when i read it! And of course....I HAVE to read it! I will forever want to know how you and Zen are! I still to this day can not believe Hunter is gone....and watching the videos of him make me laugh and cry all at the same time. You are truly an amazing person Lenore....the ability to share what you are feeling with this world....a world who needs to be reminded of how we should do NOTHING bigger than love one another as if it were our last day here! I pray for you and Zen..and for the healing you need....knowing that it will happen ever so slowly and ever so painfully! The journey that you travel each day is a reminder to me to be grateful for what I have in my life. I thank you for the time and effort you put into making sure we all know how important a little life can be! XoXo

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  14. Eva Wright Mania - I agree with Linda's post. I have read and watched everything and I will always carry a special place in my heart for you and your beautiful family. Ryder's giggles at the end just make me smile. XO My daughter loves the video of Hunter dancing on the counter :) Thank You for sharing

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  15. Amanda Holley Jones - Sending you a virtual hug and prayers for your pain. Your strength and bravery thru this journey continues to amaze me and so many others. On the days when you feel like you can't take the pain for another moment, remember there is strength in numbers and you have so many people standing behind you. I will pray for you and your family to have comfort and feel peace thru a situation that is so very unfair.

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  16. Lynette Cardinalli - I don't have the words...I have never experienced pain so torturing. I can only imagine. When I read the blog, Lenore, I can't stop crying. I am so extremely happy that you have Ryder to carry you through..to remind you of good days to come. Zen and you have such a love that is going to carry you, well into your 80's, to the highest mountains. Kiss that sweet little Ryder for me. He is such a doll. Love and kisses, Lynette

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  17. Mara Posa Tripi ♥ Lenore. I have no words to comfort you....just know we are here to "listen" to you....such a heartache...How does one mend a broken heart....of that magnitude.....sigh.

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  18. Emily Perry-Tresser - I am just so speechless, and processing your beautiful , yet so painful honesty. There are just so many dichotomies that you have to deal with on a daily basis. I know there is nothing I can say, or do, but I do know I truly love you and Zen. And that's all I feel, I can say right now. And..I guess, Thank you for posting this. Thank you

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  19. Tami Sullivan - there just are no words......i hurt for you.

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  20. Just found your blog. I'm in a world of hurt these days missing my sweet 2yr old son. He fought and suffered so much during his last 18 months - AML and a stem cell transplant. In just one month it will have been a year since he was ripped away from our lives.

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  21. To Collin's Dad - I am so, so, so sorry for your loss. My heart aches with you and I wish you some sense of peace in the days ahead. Sending you and your family very sweet smiles and much love.

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  22. Lenore, I thought of you on Mother's day and sent many healing and loving thoughts your way.

    I wish I could do more.

    I googled your blog name because I wanted to send some love your way and came upon the video of you and Zen listening to Hunter's Day at the Sea song. There is so much there....the profound loss, the way you and Zen turn to one another (literally; the physical evidence of how you lean on each other emotionally/spiritually is there), the joy of Hunter's life, the way little Ryder was mesmerized by his brother's video...

    I just wanted you to know that there are many people out there who remember your boy (who could forget Hunter?) and who pray for your family. You and Zen truly inspire me to be a better wife and to be grateful for every day.

    Hugs, love and peace to you all.

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