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.

Friday, September 10, 2010

My darkest moments......

This post is probably going to be extremely hard to read. I am expecting it's going to be extremely hard to write. But I am feeling the need to share a few things......I am sharing some of my burden and I am sharing some of my pain.

In my last post, I had made the comment about my sparkle being gone. I got an overwhelming amount of responses from so many people sharing advice, stories, and similar situations. Thank you all so much for taking the time to write me. Everything everyone wrote caused me to think a good bit about what we've been through and how we are processing our life, our love, our loss, and our amazing Hunter who has now been gone for 6 months.

I know where my sparkle is.............I've realized what's happened. I'm traumatized. I'm still numb. I'm truly still so, so sad and broken over what happened to us - over what happened to Hunter, and everything that we had to endure and witness. My eyes have seen things that would drive any mother to insanity. I think the absolute most horrifying thing that can happen to a mother or a father is to witness their child suffer. For those that had the courage to read the post from Hunter's last day - The Death of a Superhero - you got a taste of what his last 3 days of life were like. A small taste of our suffering. I didn't write or express everything that I wanted to share. I am not sure I would have been capable at that time. So it all seems to be coming to the surface now.

Many people have offered to take away our pain if that was something that they could do. Another handful of people have said, "I just can't imagine what your days are like". And I'm sure a good bit of people who follow our life and have chosen to come along on our journey with us have never lost a child. Well, right now, I am going to take you there - only because I need to get this out. I am feeling the need to release these demons that I feel have stolen my sparkle.

Our life has been ripped apart. Our souls have been tortured. And our spirits have been crushed.

Our dreams have been shattered. Our hope has been smashed. And our hearts have been brutally beaten into the ground.

Not only did Hunter die, but we had to watch him die. And not only did we have to watch him die.........we knew it was coming. It was so surreal. Think about what your mind would do with someone coming up to you and saying that your most cherished love in your entire life was going to die. Not sure when, don't know how much time you have - but it's coming, probably sometime soon. Think about that the next time your child looks you in the face and smiles. And then think about the thoughts entering into your mind that your child will soon be dead. And I don't mean to express that in a cruel way - but I am trying to get your mind to experience a little of what that moment was like for us when they informed us of Hunter's last and final relapse. Hunter was going to die. And there wasn't one single thing we could do about it to change that dreadful ending. Every last bit of love and hope that we poured into our last 3 years of life was not going to pay off. We lost. And now we had to look our son in the eyes and keep on smiling and help him live out his last few days as courageously and as enjoyable as we could. When we, ourselves, felt as if we were dying. We had to laugh and play and make him feel as if everything was alright so that he could die without being afraid or sad. Hunter didn't even know what death was - he had no idea what was coming.

This was Valentines Day. It was two days after we were told that Hunter's cancer had returned and he was going to die. This was the last day he had the strength and the energy to run around the house and play. We had SUCH a good time that day. We played chase for hours.

This was Hunter 3 weeks later. The day he died.

So other than the trauma of actually watching my child die, here are a couple other things that I fight with every still moment, every quite day and every aching beat of my heart.

Look at this beautiful, happy, smiling face. These photos melt my heart. We did a Hunter photo shoot that day and he was so much fun to play with and photograph.

Now take that face and picture him laying on his side, his chest caving in so deep just to catch a breath, his eyes rolling back into his head and him not being conscious. That's the image I have of Hunter the morning we woke up the day he died. That's what I woke up to......my little man dying. That's the first image that get's stuck in my head when I am being tortured. I will never forget what he looked like. I will never forget how hard his lil' body was working......just to breathe.

I honestly didn't think we were that close to his death, because just a few hours before that, at around 4am, he woke up and was asking me for Henry. He wanted his toy train Henry and we didn't have him with us. Henry was at home. He just kept asking for him......."mom.....Henwy.....Henwy, Henwy mom.......mom, Henwy". I was so upset that I couldn't give him the only one thing he was asking for that would have made him smile and drift back off to sleep. The sound of Hunter's voice asking me for Henry, (or Henwy as he would pronounce it), over and over and over again is another thing that gets me and gets stuck in my head when my mind is being tortured. His voice is so clear.

(Most of you already know, but for those of you that don't, Henry is the toy train that I now sleep with every single night. It stays clutched in my hand and close to my heart and will forever remind me of Hunter's sweet voice. If he ever chooses to visit me in my dreams again - he'll see Henry).

When I woke up that morning and saw Hunter in the state he was in I immediately woke up Zen. We had pushed two hospital beds together so that we could all sleep close to each other, so Zen was easily woken up and was pretty quick to take in the situation. He grabbed Hunter and tried to wake him up and get some sort of response out of him and he got nothing......Hunter wasn't gone yet, but he wasn't responding either. My sweet, sweet love wouldn't wake up. Zen tried everything and nothing was working. I immediately starting sobbing and we called in the nurse. We were basically told that his body was starting to shut down and that today might be the day that Hunter dies.

Instant panic. Instant memories coming crashing down. Instant pain.

What did they mean, "today might be the day".......we thought we'd have a few more weeks if not months with him. It had only been 3 weeks. The cancer wasn't supposed to kill him that quickly. I wasn't ready for that day. I never wanted that day to come........ever. I so desperately wanted this all to be a bad dream. What on earth did we do to deserve THIS?

This is another photograph of Hunter that just steals my heart.

Now take that photograph in and his sweet, loving face and think about holding him as he takes his last breath and dies in your arms. The moment that the nurse told us that she no longer heard a heartbeat will be another moment that I will never, ever, ever forget. Hunter was gone. We would no longer hear his voice. We would no longer hear his giggle. We would no longer see him smile. We would no longer feel his touch. He's gone. His body was right there in front of us......but his beautiful and glowing spirit was gone. Zen was holding his tiny, limp body in his arms and we cried so hard. We cried and cried and cried. Hunter was dead.

I then gave Hunter his last bath. I took my child, who was no longer breathing, and bathed him. It was at this time that my eyes fully took in all of his scars and all of his wounds from all of his procedures over the last few years. He had so many biopsies and needle pokes and pic lines and surgeries. Serious battle wounds from a brutal fight with cancer. So many scars, TOO many scars, for a little boy who was only 3 1/2 years old.

A few more beautiful photos of Hunter.

Now picture laying this amazing lil' love into a body bag. An itsy, bitsy lil' body bag made for a child. I still remember my eyes taking forever to adjust and fully take in what was about to happen. Zen had Hunter in his arms. He carried him out of the hospital instead of letting them put him on a stretcher. Hunter's nose was bleeding and I kept having to wipe the blood with a soft tissue to prevent it from running down his face. It was such a horrific feeling of sadness and loss. The coroner's van was waiting at curbside to take him away. Zen gently laid him in the bag and sobbed over his lil' body. I wouldn't let them zip the bag all the way up.....my heart couldn't take it. We laid his Lightning McQueen blanket in there with him and one of his other special blankets and told him we loved him over and over and over and smooched his face for what seemed like hours.

Hunter died at 11pm on the night of March 8th and we held his precious body until 5am that next morning. By the time the coroner came, he was so stiff and so cold..........but he was still my child and I didn't want the last time I ever held him to end. I didn't want to let him go......I didn't care how cold and stiff he was......I just wanted him with me. And now we were about to turn him over to complete strangers and just let them drive off with him. He's never been away from mom and dad. He's never been alone.

Our last moments with our son were shared with 2 security guards and a coroner. The security guards were there to walk us out and to stop traffic and pedestrians as we said our goodbyes. People stopped dead in their tracks as they witnessed what was happening. So many hearts were bleeding for us in those moments. Such a pure tragedy.

I remember collapsing and vomiting and leaving the hospital with an empty stroller. The first and only time we had ever left the hospital without Hunter. I painfully sobbed the entire way home and kept apologizing to Zen because I couldn't stop. The pain ran so deep and was literally taking my breath away. Zen's vibe and energy was that of a raging bull. He was angry. He was so, so sad and so incredibly angry that his son was gone......I thought he was going to explode and crumble into a million pieces.

My mind was racing and reliving every last day of the last 3 years of our life.

I remembered feeling so happy in the hospital room in January when we thought he was cancer free and that we were only dealing with Graft vs. Host. Hunter was starting to feel better again and truly display his fantastic personality by acting like the lil' champion that he was......always.

I remembered the amount of pain medication he was on to keep him comfortable his last three days. At some points over that weekend he was on Morphine, Oxycodone, Versed, Tylenol and Methadone...........ALL AT ONE TIME. Towards the end, when he was still experiencing fevers of 103 to 104, they had to put the tylenol in his lil' rump because his body could no longer process it through his mouth.

I then remembered how many times over the last 3 years Hunter's temperature was 103-104. There were so many days that our poor lil' love was on fire. Towards the end......it was just normal for him.

I remembered having to give him 27 doses of a huge variety of medications after his Bone Marrow Transplant just to keep him alive.

I remember watching the cancer take over his entire body. After beating it away for over 2 years it came back so fast and took him over so quickly. It took his ability to walk. It took his ability to play. It took his energy.......it took his life. It took everything.....piece by piece by piece.

I remember it all.........

This is Hunter's last video, about 6 hours before he died..........it just absolutely crushes me. I will always remember this - it's embedded in my mind....it's embedded in my heart. He's saying mom and dad over and over as he shows us his cars and gives us his last wiggle......his last words....his last smile. Zen had made the comment last night as we were watching this and sobbing that even as he was dying......he was still happy. He wasn't it any pain and as far as he knew - this was just another normal day in the life of Hunter and he was just going off to sleep. And Zen and I remain truly devastated that he never woke up.

Zen and I consider ourselves to be pretty strong individuals - mentally, emotionally and spiritually. We fought Hunter's battle, by his side, without leaving him for a moment - and fought with him to the bitter end. We would have never given up. Hunter would have never given up. And we will treasure every last day we had with him and always wish we had more.

We tried grief therapy at the beginning and it didn't seem that productive for us. We went together and then went separately and it's almost as if we felt worse when we left our sessions. Our poor therapist at the time started off by asking us about Hunter and wanted us to tell her about him. We both began and shared each others words and we painfully described what a wonderful child he was and how full of love he was and how much he enjoyed being alive. She handed us some tissues as we continued to cry our eyes out. We went on and on about this amazing child who we no longer have and how terribly sad and broken we are.......and by the end of our story of what the last 3 years of our life has been like and talking about the love that we have forever lost........we had to hand the tissues back because our therapist was then in tears. It's truly SUCH a sad, sad heart breaking story. And other than being brainwashed.......our life and those brutal memories and images will never leave my mind.

Hunter's last days of suffering, which ultimately ended in his death have diminished my sparkle. This is my personal hell and those moments that absolutely wreck me and bring me to my knees are the moments that I constantly need to remember to forget, yet never forget to remember. Zen and I will never recover. We loved him more than anything. We love him more than ourselves. It was the truest and purest form of love we have ever experienced. And we ache every moment of every day that we are without it. The overwhelming emptiness and void that we feel is truly indescribable and will never, ever, ever go away. We will carry it with us to the grave.

We are now searching for the light. The bright and splendid light of Hunter's wonderful existence. Hoping to light up our souls, hoping to light up our spirits, hoping to light up our lives. It is there.......it's just buried so incredibly deep within our sorrows right now that is, unfortunately, many layers thick. But we won't give up and we won't give in. We will continue to stand strong together and hold each other tight and forever remember the love that we lost, the love that we experienced and the love filled lives that we have lived.


  1. Lenore, I am just sobbing as I read this. You are exactly right. I CANNOT imagine what your life is like on a daily basis. I CANNOT begin to imagine how I would survive if someone told me I was going to have to say goodbye to one of my boys. On September 8th it would have been the 21st birthday of my cousin. He was killed in a freak accident when he was 12 as his dad stood outside and watched it happen. His 8 year old brother was also in the accident but survived. Their family was/is also very strong in their faith. The father went through hating God and turning his back on his faith for a long time. The mother never strayed from her faith. On E's birthday this year she asked that we all post happy memories of E on Facebook. When he was born he had 2 clubbed feet. He endured many surgeries and braces on his legs, physical therapy and pain for a long time. I took care of him at his daycare when he was going through some of that. I remember after nap time he would crawl up into my lap and snuggle. Then I would help him put on his braces to he could go outside and play. I cried as I posted my memory. Then I cried harder wondering how she could remember the happy memories over the sad ones that were spent during his last hours in the hospital. Shortly after his death I asked her how she got out of bed every day. Did it get easier? Did the bad memories fade? Sadly, she said no to all of my questions. She told me that she had many many many dark days with horrible memories. And even now she says it's not "easier". "You just learn to live with the pain". What a horrible realization to come to (I thought as she said that). You learn to cope better as the time passes she said to me. I know it is of no comfort to you to know that other parents share your pain and grief. After all, I know you would NEVER want anyone to know what you are going through. But all the same I just wanted you to know that there ARE other parents who are where you are. Parents who are 9 years ahead of where you are, and parents who have not yet but will soon be where you are. And there are angels of babies and children who also have memories. Memories of wonderful and loving parents who never left them. Memories of always feeling loved. No memories of pain or suffering because you took those memories to bear for them. I hope you feel the hugs and tears I am crying for you and Zen tonight.

  2. Lenore - I don't know what to say. All of what I do say will probably be insufficient. But, I can't imagine your pain. I don't even know you and I am so angry and sad that your family had to go through this and will continue to go through this. You ARE strong and I can't imagine that what you are going through right now is completely normal. I'm so glad you are writing and sharing. It will help the healing eventually. You WILL sparkle again. There is no rush. Mourn and grieve as long as you need to. I have no doubt that you have it in you to sparkle again when you are ready and your family will be there for you. Love to you. Faye

  3. Angelique Elser - My son is now 3 1/2, and reading this brought me to tears. I am so sorry for your loss. I remember having some similar thoughts to yours about leaving my sister at the hospital after she died. It felt awful walking out, choking back tears and knowing I'd never see her again. That was 5 1/2 years ago. I am so sorry that your loss was a child.

  4. Linda Fernandes Bryce - my heart simply aches....after reading your post and watching little hunters last video....i was soooo incredibly sick to my stomach....i had heart palipatations....and was struggling to get a breath! When i was able to come back to the computer...the song "This Ones For You" by Barry Manilo was on...soooo fitting at this moment! I dont know how to tell you to get through this lenore....but know that i pray for you and zen endlessly....i pray that peace will find you...that your sparkling smile returns...that you will someday have a moment where you do not feel like sobing...that someday the pictures and sounds in your head will lessen....and you will be able to go on in this life God has designed for you. I am eternaly grateful that He has blessed you with Ryder! I am eternaly grateful that God has blessed my life with and your stories...even as painful as they are...i am so sorry for your hurting heart! you are loved

  5. Katie Drake - Can hardly bare to read your blog. I have imagined this scenario as we were told clearly it WOULD happen. I am so so sorry and sad that you had to experience this for real and still cannot fathom that Hunter is gone. It's not fair. It doesn't make sense. It hurts to the core. Sending you love. Katie

  6. Shannon Boothe Ruiz - You've been through so much. I can't begin to imagine your life and heart ache. I don't have words but wanted to let you know I support you and your feeling always. Your sparkle will not forsake you. It will come back someday and we'll all be with you until it does.

  7. Amy Green Zimmerman - Lenore,
    You, Zen and little Ryder are forever in prayers. Your post today was honest/real. Oh, how I pray that peace will come to you soon. I pray that writing this out will bring healing for you. Praying for that sparkle!

  8. Cheryl Lynne Armenia - I am so terribly sad that you have experienced my worst fear in life. Your story touches me deeply and profoundly. Sobbing as I read this beautifully written (you are a gifted writer) tragedy of the loss of the purest form of love we will ever know. I pray for you to find peace and strength.

  9. Kat Martin Willcox - Lenore, I Love You! I have traveled with you in some small capacity for years and yet I had no idea. I hurt for you and with you, and I remember Hunter constantly. I respect your honesty and willingness to be vulnerable. Thank you for trusting us with your truest of feelings and hurts. I want to be here for you when you need to vent or scream or cry or remember. I love you and Zen and Hunter and baby Ryder.

  10. Hadley Fried i know how you feel. i saw it happen to my boy too. we are sisters in a way no one else is. peace, lenore.

    ps- i'm 100 percent sure i only have half a heart left. but it still works!

  11. Ezekiel Edward Goodwin - Just read your post. Nothing to say but I love you guys. Unreal.

  12. Emily Perry-Tresser - I remember being right next to you when someone asked " Is this your first child?" and I walked off and thought, wow,She and Zen have to carry this insurmountable pain with them at all times, and be ready to shift emotions/answer questions/DEAL with this,etc.

    I just read this blog post. I am processing it. It was difficult to read in some areas. But it is also the reality of your life. And I want you in my life. Your honesty helps me understand a lot. I receive this blog post. I am listening. learning, and loving you, and your family.

  13. Monica Raber Miyashita - I just finished reading your post Lenore, and I would say you are about where I was in your journey through this horrible tragedy almost exactly 6 months after Lydia's death. It was so hard for me for the longest time to get beyond how she died...how horrible it was to watch, and just the "horror" of the whole experience..from diagnosis to treatment to death. I do know that the horror you feel now will lift ever so slightly with each passing day and month...it is not that you ever forget per se the horror of things, but that for the most part, you start to remember more of the good than the bad. That is not to say I don't still have bad days...I do. But the horror of things does fade (in both a good and bad sense, I suppose), over time. Everything you are experiencing is perfectly normal I think, and you are both doing the right thing in not pretending those feelings don't exist...I firmly believe you must journey through and not around them. Hang in there....this cloud that currently hangs over you will start to lift. God Bless...and many good thoughts and prayers headed your way.

  14. Heather Pace - I cannot imagine your pain...those are the greatest fear of any parent and I am so, so, sorry that you have to experience this every day. Thank you for sharing so openly....my heart is broken for you and yet I know it does not even begin to compare to the ache you carry always. I have no words that seem fitting, but I keep you in my prayers. ♥

  15. Heather Hotvedt Bryce - I am speechless.....So candid, so deep so incredibly heartbreaking. Because you have been so honest and open so many love Angel Hunter more than you will ever know. God speed

  16. Raina O'Hare - It is awful... it is awful to imagine, it is awful that you had to go through it, it is awful that it haunts you and has taken away your happiness. But it isn't too awful to share. I think that is one of the worst parts of depression... you feel that the burden is yours alone because your thoughts are too painful to inflict on other people. It would be almost like attacking them... and what is the purpose of making someone else suffer what you are suffering? It is isolating.
    But trust me, anyone who has read your story has already thought those thoughts, imagined those moments, and lived if only for a fleeting moment a tiny part of your pain. It is horrifying, depressing, frustrating... it is truly the worst thing that can happen. But it does help to throw it out there - to point at the elephant in the room that everyone knows is there and say "This... this is the truth... this is as bad as it gets." We can take it. We can't make it go away, but we can acknowledge it, and walk that path with you as many times as you need. Really, it has only been a few months. My hope and prayer is that in time you will find some freedom from this sadness and rekindle your spark. Love & Hugs... Raina

  17. Terry Robertson Ince - Sweet Lenore...

  18. Alexandria Strong Useted - Wrapping my arms around you all, you are amazing. Love you!

  19. Janet Melton Byrum - can you post the day your little man was born? Share it with me please:)

  20. Tami Sullivan - you're right this is a hard post. most of us can only imagine and that scares every parent. my heart hurts for you both and those of you on here who have also lost a child. please don't ever feel like you are burdening anyone with your writing.

  21. Hilde Burm - So hard to read....

  22. Nicola Kosciuk-Galassi - i love you. forever with you in your forever journey. xoxo

  23. You are so very right, NOBODY can imagine your pain. Yesterday my mom and I were talking to my nephew's teammates mom and telling her about my sister and this woman just started crying and said "I can't imagine." My mom just looked her square in the eye and said "you're right, you CAN'T imagine. Well, you can imagine but you CAN'T understand." Nobody can understand what it's like to see your child die from cancer. It's the most horrific thing possible. I was there when my 5 year old nephew was told his mom was going to die, when his dad told him to say goodbye to his mom, that he'd never see her again, that she WASN'T going to get better, that despite her fighting and FULL BELIEF that she was going to get better she was going to die, I was there when he saw his mom for the last time, waved to her as he walked out the hospital door and said "good luck." Nobody can understand your pain, it is your pain and your shattered life that nobody can even come close to comprehending. I have anger towards people who think they can come even close to "getting" it. I think of you and Hunter daily and I can't understand what you are going through.

  24. I've never commented before because seriously... well, it's too much. I watched the video once, in the original post, and I'll never forget it. I don't want to watch it again. I really have no idea what to say to someone who has lived through hell.. and who has to keep on living. It's beyond heartbreaking. It's impossible. And yet it's your life. Thank you for sharing. That's really all I can ever say to you.. thank you, thank you, thank you. Reading your story helps me. It's so raw and honest and painful. It's real. Hunter lives in my heart, although I never met him, I feel I know his spirt through you. I hope telling your and Hunter's story helps you find your light. If I were you, I'd take an SSRI for depression while I was struggling.. but that is me and really, how can I ever say what I would do if.. you WILL find your light again. I believe that to be true, and I know Hunter lives on and has touched many, many lives. I also know that none of that really matters and at the end of day, you must still feel shattered and broken because you watched your baby die. I'm so so sorry. And truly, Thank you for sharing your experience with us. I can only hope that it helps you, too.

  25. Lenore and Zen,

    I don't know what to say that has not already been said. I hate this story and I hate this ending and I hate that this is happening. I hate that you no longer have your little boy to hold, I hate that zen no longer has his little boy to hold, I hate that Ryder will not get to play with his brother.. I hate it all. I hold my 16 month old SO tight because of your story but I wish it was different. I SOB for your son, my heart breaks for your family. Sometimes at night when I let my mind wonder I think of your son and I weep. Everynight when I pray - part of my prayers are that Hunter visits you..

    Lenore I am so very sorry and I know this will not make you feel an ounce better but know that I think of your son every single day... I also think of Ryder and I hope he will be as awesome as his brother!

    Love, Hugs and Kisses
    Your stranger Friend

  26. Codi Kodama Lloyd - You have made yourself stronger through your words & if you haven't realized it by now, you will when you least expect it. If there were any words that I knew would make it better you know that I would be there in a heartbeat to wisper them in your ear. What you need to know is that there are many people out there you have deeply touched with your writings & memories of precious Hunter. You are loved by many & I want to send all the hugs & kisses your way! Keep on letting that sparkle shine through! XOXO

  27. Let me begin by taking a few breaths. I have got to stop reading these at work. I have to keep going to the bathroom to cry. I am so sorry again and again. I wish I could do something to take it all away. If I had known you a few years ago, I would gladly have offered myself in place of Hunter. I am praying like crazy for you guys. You are such wonderful people. I don't even know you, save for a few e-mails and what I've read here, but I can see that you guys are amazing parents and people. May God Bless You and Your Children. <3

  28. Forgive me if I have over stepped here.

  29. I am so Sorry...I cant stop crying.I hope you are cooping well since he left your world

  30. I am So Sorry - I hope that his soul is resting in peace - I can't stop crying , I pray you and Zen are cooping without the rose of your life. I send you a big hug from England.