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, June 30, 2010

Life, Pain and Heartache...

A letter from a dear friend......



Just can't seem to break this sadness........

I feel as if someone has stolen my smile.


From Samantha:

Your smile is with Hunter right now...it will find it's way back when Ryder arrives, but it will not be as whole. It is just a different smile than you once had.

Scarlett sleeps better at night knowing Angel Hunter is with her. I know it means shit...and the loss of Hunter is a pure tragedy. No words can make you smile, but know every day I think about Hunter and his little soul reminds me to be loving to my children no matter how tired I am...no matter how many times I get up in the night with my girls and would prefer not to...he reminds me to just love them and cuddle them every chance I get. Because of you, Zen and Hunter - I am a better mom. And because of Hunter...his little brother Ryder is going to be loved more every day than most kids will ever be loved.

Lenore you have changed peoples lives in amazing ways. I imagine it does not take any sadness away or make you feel better, but without your strength and courage to share your hurt, your sadness...lots of parents in this world would be taking their kids for granted. People are fighting hard in Hunter's memory to find a cure for his type of cancer. This is all because of YOU. I hope that you can find it in you to smile at yourself and tell yourself how truly amazing you are.

I want to thank you for all you do to make me appreciate my life and the blessing my girls are.

Sending you lots of love and strength.

Lots of Love from Colorado

****************************


From Me:


Your message broke me into pieces. I am so, so sad and what you said in the beginning is unfortunately true......and it made me realize, again, what I'm up against for the rest of my life. I will never smile that way again. I know I'll smile and I know life will get better, but it will never be as wonderful as it was......it just can't be. Our son died. Our lil' love was taken from us.....and taken from us in an extremely horrific way. Some of the most crushing days are the days that I remember Hunter's last 3 weeks, or watch Hunter's last video. I'm traumatized. The fact that Zen and I had to do our best to enjoy Hunter for as long and as much as we possibly could, while he laid there and died right before our eyes is just so brutal. As a mother and father.......it's our own personal hell. Watching our beautiful and innocent child die is beyond mental repair.

His little body just deteriorated towards the end and he tried so hard for so long.....it's just not fair. Once he had his final relapse and we knew he was going to die, we tried to get him out and show him as much as we could for as long as we were going to have. I will forever remember taking him to the Portland Zoo - a place where kids are supposed to have fun and run around and see the animals. Well Hunter's visit was a little different. It was one of his last "hurrah's". He was not having a good day and seemed to be in some discomfort and was doped up on versed and oxycodone, and it was hard to know how much of the zoo he was actually enjoying. We strolled him around and showed him every single wonderful animal there was to see. Sometimes he laughed, sometimes he just sat there and stared and sometimes it seemed like he just didn't care. To take him around in this surrounding while other children were running around and playing and enjoying themselves to no end was so hard for Zen and I. Not to mention all the kids were staring at Hunter because of his "nose hose" and were wondering why HE wasn't up and running around like them - wondering if he was "sick". Little did they know that he was going to be dead two weeks later. That alone sticks a dagger in my heart like no other. Every time we drive by the zoo, which is often, I feel sick to my stomach and my heart painfully breaks. Such a terrible reminder of what our family had to go through.......and witness.......and endure. Zen and I have said that as soon as Ryder is born and can open his eyes and take things in........we're taking him to the zoo. We need to have another memory to associate it with - but the zoo, unfortunately, will never be the same for us. For the rest of our lives. And the same goes for Disneyland. The weekend we were supposed to go to Disneyland, was the last weekend that Hunter was alive. He never made it. He never got to see Disneyland. He wasn't supposed to die that quickly. I feel as if I now hate Disneyland and hate thinking about it or hearing about it, just because of the terribly sad thoughts that soon follow.

And the list goes on and on.....

So I know that these are the mental challenges that we have to face and not acknowledge on a daily basis. And I know that it's better to focus on the good and not so much on the sad. But, for us, everything is still sad. Seeing him smiling in photos, makes us sad. Seeing him having a good time dancing, makes us sad. And seeing photos of us together as a family, living life and enjoying EVERYTHING, no matter what we were up against.......makes us sad. We miss him so much and when we start to think about him and what a wonderful child he truly was - our walls come tumbling down and the tears flow like a raging river........and just don't seem to stop.

You finished your message with a lot of wonderful points. And I am so aware of those things and are forever appreciative for what Hunter has brought into this world. I refer to his life as a wonderful, wonderful tragedy. I am so thrilled and couldn't be more proud of how he affected people and their perspectives and the way they now chose to live life. I am honored to have a son that has inspired as many people as he has - he has lit a flame in many peoples hearts and in many peoples souls. And I am forever grateful that he is bringing an awareness to other parents so that they DON'T take anything for granted and DO love their children more, and fully appreciate what true treasures they are and to embrace that with every last morsel in their bodies. And I also couldn't be happier about the fundraising and research efforts and the number of people that are running for Hunter and all the other lil' soldiers out there that have lost the battle, are still fighting or are about to suit up to begin the fight. He continues to challenge people and motivate people and make people give it their all.......for much longer than they ever thought they could. His story brings it close to home for many, many people........and I love that. I love that he is still making a difference and will do so for a long, long time.

But I am torn that it was at the expense of my child.

Ryder's birth will bring a much needed joy into our lives. Another child to live for and care for and love beyond belief. But I feel as if I will be forever sad that we now only have one son.......and not two. I will be forever sad that Hunter and Ryder will not be growing up in this world together, with us, living life, discovering life and loving life.

There will be ups and downs for the rest of our days. We'll have good days and bad days for the rest of our lives. And in the very end......I still want Hunter back and wish so desperately that he was still here with us, in my arms.....I miss his love. I miss his smile. I miss his affection. I miss his love for life. I miss my lil' man.

Samantha, thank you for always being so open and honest with me and for encouraging me to find my smile. Thank you for everything you've done for my family. Thank you for sharing Hunter with your girls. Thank you for your loving friendship. And thank you for your amazing heart. You've been traveling this journey with us for quite some time now and I am very happy to have you by my side.

I'm looking forward to finding some sort of smile that will soon rest upon my face and unburden me from such sadness.

With so much love and heartfelt appreciation, Lenore


Our trip to the Zoo


















29 comments:

  1. I can't imagine the hell you and Zen live with each day, and I wish I had more than words to throw into your deep well of grief. There are no human words to comfort such an inhumanly cruel wound.

    All I can do is what I have done since I first read about your beautiful family: send love, prayers and positive thoughts your way, and let you know you are being thought of.

    juanita

    P.S.
    I know you must be sick of hearing how brave and loving you are. I bet you and Zen would have been just fine if the universe had nominated you for a 'boring' life without cancer and the horrendous experiences you endured with Hunter. I'm sorry I can't do more than resort to cliches when I post here.

    ReplyDelete
  2. Hey Lenore,

    I have wanted to say to you what your friend has said for so long BUT I knew that if I were in your shoes I would feel the same way "why at the expense of my son". Who wouldn't feel that way. I know that this will not make you feel ANY better becase it would not make me feel any better but your son is in my thoughts EVERY SINGLE DAY.

    The other day Jack had a stomach virus. I was up to my nose in disgusting laundry, my boss was breathing down my neck about something, my husband was working late AGAIN and there I was feeling so angry and frustrated and there was Jack - Crying and full of puke. I cry as I say this but I thought of you. I thought to myself "Lenore would trade anything to her whole world to be in my shoes right now regardless of how overwhelmed she was". I picked up my son and held him. I shoved the gross laundry to the hallway and held Jack until he was back to sleep.

    Lenore I am so sorry and I know I say that often but truly I am. Your story has broken my heart more than any story about a stranger has in the past. Hunter's outcome was NOT fair.

    Peace, Love and Hugs
    Your Stranger Friend
    Kayla

    ReplyDelete
  3. Julie Serafina Pardee - I really love these letters. Especially when your friend said your smile was with Hunter, and when it comes back it will be different. There is an innocence lost. And a tragic wisdom gained. I was at the zoo the other day with my boys and thought of your zoo trip. I remember looking at your picture of Hunter with the Lorakeets and the whole time we were with the lorakeets I was thinking of that picture. I remember how enthusiastic you and Zen looked and how even tho Hunter wasn't able to be present, he was able to look at his loving parents and take in the joy that he couldn't.

    ReplyDelete
  4. Tami Sullivan - I think of you guys when we're at the zoo too! And when I see mcqueen or mater :)

    Tami Sullivan - I wish I would've fully read your blog about the zoo before I said that. I just think about you all so often.

    ReplyDelete
  5. Elleigh Ronen ♥

    ReplyDelete
  6. Deborah Heap - xxxxxxxxx

    ReplyDelete
  7. Marla Mosher - xoxoxoxoxo

    ReplyDelete
  8. Juanita - your cliches are just fine. I love hearing from you. Thank you so much for sending your love and prayers and positive thoughts. They are always welcomed. XoXo

    ReplyDelete
  9. Kayla - thank you for thinking of our lil' love every single day. That makes two of us!!! And probably many, many more. He still delivers sunshine and tears........but I'll take what I can get to feel him around me.

    I hope Jack is feeling better. And yes.....I would trade anything.... Sending extra love and hugs your way. XoXo

    ReplyDelete
  10. Julie.......that was the most enjoyable time Hunter had the whole time we were at the zoo. We have a fantastic video of him actually giggling and it's when one of the larakeets actually gave him a little pecking kiss. He asked to watch that video several times his last 3 weeks. He just loved it. It was so incredibly hard to smile and enjoy ourselves that day - but we did the best we could. What a sweet lil' love he was.

    ReplyDelete
  11. Hilde Burm - It's heartbreaking to know you will never smile like before Lenore, I understand you so good, this happened with me also and the smile will be never the same any more ... for sure Ryder brings again a lot of happiness in your life and in the life of Zen . x x x

    ReplyDelete
  12. I miss hearing from you Hilde.......you hold such a sweet place in my heart. Thank you for being by our side and for traveling our journey with us for as long as you have. My heart goes out to you as well and I think of you often. Sending you so much love and many kisses.....always.

    ReplyDelete
  13. Kelly Roberts - When my mother gave birth to her 6th child a woman asked her if she really thought she had enough love for "all those kids." My mother said "Each child brings their own joy and love." I believe this- we don't "manufacture" love- it comes from God, for each child. Until that child is ours, we don't need the extra. Hunter brought his own joy and love, and they were in your smile. When baby Ryder comes, he will bring his own, and your smile will be full again. Not full of the same but new and unique- yet just as fulfilling and beautiful. And if there is a hint of sorrow, there is beauty in that as well. God bless you Lenore and Zen and baby Ryder.

    ReplyDelete
  14. WOW Kelly.....6 KIDS - how WONDERFUL.

    I know Ryder will bring such an amazing smile to my face. I would never want to not share that with him and his life and influence his lil' being. It made a big difference in Hunter's life. ...most definitely. So I guess I will buck up and do my best and share all the love and smiles that have been bottled up in me for the last few months. And I can only hope for a beautiful sorrow to peacefully rest within me when it comes to the surface. Thanks for being such a sweetheart and for sharing your stories. I love hearing them. XoXo

    ReplyDelete
  15. Sending you love and hugs Tami........thank you for continuing to walk our path with us and for sharing your heart. It's so much appreciated. XoXoXo

    ReplyDelete
  16. Anna Perry - Oh Hunter, how I wish I could have met you in person, but have come to know you through your parents eyes and their limitless love for you. May you send many blessings their way.....you will remain forever in my heart.... never forgotten,most cherished, always loved.

    ReplyDelete
  17. Naoko Kawaguchi - Thank you for sharing the letter. I think that she was brave to write you so honestly and truly, because I did not know what to say, and will not know what to say for the saddest thing. Hunter keeps touching so many hearts because of your willingness to share. There are so many reasons that you are his mother and this is one of them.

    ReplyDelete
  18. Sandy Rowlette Bent-
    Lenore, I can't imagine your pain and how much you are missing Hunter. I hope you can feel my hugs because they are there for you everyday.

    ReplyDelete
  19. I feel them Sandy. For sure. Thank you so much for keeping us in your heart. Helps me feel like I'm not so alone. Also helps me smile on those days when I'm feeling a bit lost. Sending love - XoXo

    ReplyDelete
  20. Deborah Heap -
    Hi Lenore, I think about you so much, I am so in awe of your incredible strength and spirit. Whenever I think I am having a bad day I just think about you and Zen and your beautiful Hunter and it really puts my problems into perspective. Love and hugs from the uk. Debs xxxx

    ReplyDelete
  21. Thanks so much for the love and hugs Deb - means a ton. I'm glad we somehow help you on your bad days! There's always some good each and every day that comes out of our situation. Hunter and his journey was truly a blessing to us and so many other people. Sending love and hugs back!

    ReplyDelete
  22. Lenore,
    You don't know me as I just spotted your post on Jodi's page. Somehow it led me to your blog and the story of your sweet boy Hunter. I read with tears and just wanted to tell you how very sorry I am for your loss. I know that there are no words that can bring measurable comfort in this dark time but let me share a promise that a close friend who also lost her daughter made to me... you will find joy and you will be happy again. Simple yes, but I remember being so afraid that I would never be ok again. Adding you and your husband to our prayers during the missing of Hunter.
    Fondly,
    Trinity

    ReplyDelete
  23. Lenore, Zen, Ryder and ^Hunter^,
    I can totally identify with the bittersweet nature of that trip to the zoo. You were and are such wonderful parents! I remember putting on such a happy, joyous face for Liddy, and it is SO very hard to do, but you and Zen did EVERYTHING to make Hunter's life so wonderful. I can see the joy in his eyes as he watched you and Zen. He was a beautiful,loving boy who will always be in your heart, but you are right...it isn't enough to last a lifetime, even though it has to be.

    Grieving with you and for you,

    All of our love,
    The Miyashitas
    Monica Mark Max and ^Liddy^

    ReplyDelete
  24. Thanks for your comment Monica. My heart feels as if it breaks all over again every single day. It's comforting to know that there is someone else out there that shares this same experience. However, I so wish this was not the case. I wish it never happened to us at all. Somedays I just feel completely overwhelmed over the sadness that now lives on in me. I want to hold him in my arms so badly. Xo

    ReplyDelete
  25. Lenore, thanks for taking the time to respond to my comment :) I continue to hold you, Zen, Rider, Hunter and everyone who is hurting without Hunter in my thoughts and prayers. I wish you could hold him, too.

    xxxxxxx

    juanita

    ReplyDelete
  26. Oh Lenore... I think about you all the time. A few days ago I photographed another child who passed away too quickly and every time I add you and Zen into my prayer list of hurting parents. I cannot wait to hear that Ryder's here! Take care of yourself. Much love and hugs, Wendy

    ReplyDelete
  27. I am hoping all is okay - I haven't seen an update here in a month.

    ReplyDelete
  28. Still praying, still sending the most positive and loving vibes I can, and still thinking of your sweet, sweet Hunter. I hope you're feeling well and look forward to "meeting" little Rider, too.

    juanita

    ReplyDelete
  29. I did see that Ryder was welcomed into the world last Friday - CONGRATULATIONS!

    ReplyDelete