A Family's Story about Courage, Bravery and the Defining Moments of LOVE
Our sweet, lil' baby love lost his battle to AML Leukemia on March 8, 2010. We fought long, hard and very aggressively for 2.5 years, only to have his cancer come back for the fourth time to finally take his life. He was only 3 years old.
This entire blog is about Hunter's amazing journey. It's about his life and his love......his determination and his courage.......his absolutely, brilliant personality, and the affect he's had on people all over the world.
He's left an unimaginable footprint on this earth and has changed the lives of thousands of individuals. People who didn't realize how precious life was, now live it with extreme gratefulness. People who took every minute they get to spend with their children for granted, now savor every last second. And people who weren't quite sure what love is all about, now love deeper, love stronger and love with every ounce of their soul.
People all around the world have shared their love, their well wishes, their prayers and their inspiration, and we could have NEVER achieved as much as we did without them. We are humbled by their generosity & their true friendships & are forever grateful for every last person that has come into our lives through our experience with Hunter. He was our precious baby love who we loved and cherished with all our hearts and we are forever crushed and terribly, broken-hearted.
Dance in the clouds baby cakes. Mom & dad are watching proudly & you will remain so very close to our hearts for all of eternity.
A few months ago we were asked to write a song. This is not an unusual request, but it was the most difficult song we have ever written. It wasn’t just any song. It was a Song for Hunter.
Hunter was a little boy who lost his battle with AML Leukemia on March 8th 2010. He was kind, brave and hilariously funny. He was only 3 1/2 years old. We never met Hunter, but we discovered his story through a friend of ours who introduced us to his parents’ blog that documented his journey. Reading about his courage and looking into his eyes though pictures, we realized that we had to do something. “Something” became a song in his honor.
We first decided to write a song as a gift to his parents. But then we realized that we could do something bigger. We could help other children and their families who are battling this disease. So we decided to write a song that honored Hunter while raising money for leukemia research through the Healing Hunter Foundation. (www.healinghunter.com)
Now we had a goal, but that didn’t make it any easier. How we could possibly write something meaningful enough to honor such an amazing boy? A very tall order indeed. After many weeks and many unfinished songs in the garbage, we finally found our inspiration.
Inspiration came in the from of a little home video of Hunter and his parents at the beach, enjoying the sun, the breeze, and the crashing waves. Hunter was so happy, and his infectious smile and giggle brought us all the more close to him. How do we honor Hunter? The answer was simple…celebrate his life.
And so, a “Day At The Sea” was born. It took us nearly 4 months to compose, record (including recording an amazing children choir), produce and mix the final version.
We truly hope you enjoy the song and help us spread the word to raise money for much needed research.
100% of the proceeds go into the Healing Hunter Fund where they will be appropriately dispersed to the research efforts towards AML Leukemia, families touched by pediatric cancer, as well as to the organizations that so graciously helped, supported and encouraged us during Hunter's fight. We could not have done it without them and they will be forever appreciated.
Do you remember? how the sun tried in vain to warm the day?
And how the salt wind put a tangle in your hair, your jet black hair. We were the only ones there
But as sure as gulls danced in the sky, We saw your toothy smile and your laughing eyes Day at the sea and your love was a wave crashing through my memory.
Do you remember the shape of wind-filled sails, castles built with pails. Do you remember, the wind on the saw-grass hill or how the world refused to stay sad, or still.
But as sure as gulls danced in the sky, We saw your toothy smile and your laughing eyes Day at the Sea your love was a wave crashing through my memory.
Day at the sea, crashing through my memory. your love was a wave
ALEXIS HARTE: In addition to touring nationally and internationally (sharing bills with Cat Power, Taj Mahal, Ritchie Havens, Dar Williams and more), Alexis has had countless tracks placed in national television shows (ABC, PBS, WB, FOX, UPN). Alexis recently signed a multi-year music co-publishing deal with Lionsgate Entertainment. (www.alexisharte.com)
SIMONE BENYACAR: In the last few years he has composed original music scores for advertising campaigns such as The Lord Of The Rings: The Two Towers, Harry Potter and The Goblet of Fire, Sin City, Apocalypto, Harry Potter And The Order Of The Phoenix, and video games campaigns like Halo 2, and Call Of Duty II.
Zen and I share lots of laughs together. Laughter is a huge part of our lives, and without it, our world right now would be a much, much darker place. Almost like a silent hell. But I will have to say - that as much as we laugh..........we also cry. And cry hard and for long periods of time. Right now there seems to be a tolerable balance - but we are hoping for and will happily welcome the days when the crying is less and the laughter is more.
As our days continue without Hunter.....so many memories enter into and out of our minds - constantly. He's all we think about, still, and we are trying to desperately sort through these memories to figure out which ones bring us peace and which ones bring us an overwhelming sadness. However, in the end, it seems as if all of them still bring us to our never ending flow of tears.
Hunter's Memorial Celebrarion was full of these tears, but it was also full of an immeasurable amount of love, everlasting hope, and an abundance of inspiration. Arms were wrapped so tightly around us that day and the friendships and bonds that were shared brings the tiniest bit of light into Hunter's sad departure. The last thing we ever wanted to do is say goodbye to our lil' love. So you can imagine the pain and the extremely intense feelings that were all brought to the surface in an attempt to release our sweet, precious, baby boy out of our arms and into the sky.
This was the opening performance at Hunter's Tribute. Ava's voice is truly phenomenal and she set the tone for a lovely and extremely heartfelt celebration.
Ava Gaudet & Lucy Graves - This Woman's Work
The following are Hunter's video slideshows that played during his celebration. This gives everyone a sense of how sweet and loving and endearing our amazing child was. He throws down wonderful belly giggles, insanely talented dance moves and a special love and kindness that is so terribly missed. We miss his winks, we miss him blowing us kisses, we miss his sweet smiles......we miss everything.......and always will.
Zen and I both had some words to share......but believe me......it was extremely difficult. It was almost as if once we said our goodbye - it became final. We got up on the platform, hand in hand, and thank goodness for that - because just knowing Zen was right behind me to catch me if I were to fall, gave me much comfort and handfuls of strength and courage. We are sincerely committed and forever devoted to each others healing - knowing what a long journey we have before us. To share the life that we've both now lived has bonded us together immensely, and in my heart, I know we will never part.
Here are the few words that I managed to express......saying sweet dreams to my lil' love was one of the hardest things I've ever had to do.
I have been trying to put this horrible emptiness into words and I'm failing terribly to come up with the right way to express the gut wrenching pain and intense feelings of loneliness and mental anguish that Zen and I are experiencing. I feel as if we've been violently thrown off a mountain top and we continue to fall without ever hitting the ground. So the sick and frightened and soul battering feeling in our hearts and in our stomachs just sits there all day long as we continue to fall further into the depths of our sorrow...........and we are assuming and have rightfully been told that this feeling never goes away........it just slightly dulls from time to time.
We've lost our child. We've lost the bright and beautiful sunshine in our lives, the never ending happiness in our smiles, and the irreplaceable joy in our days. We are still stunned and still in disbelief that this was Hunter's ending. So very hard to comprehend.
Here is Zen's beautiful tribute to Hunter while also giving thanks to all those that have experienced our journey and cheered us on and encouraged us along the way. The road we've been walking the last 2 1/2 years is one we haven't wanted to walk alone.........and we are forever grateful for all those that have endured this heartbreaking time in our lives and have held on to us for dear life.
This is the photo slideshow that continually played at Hunter's Memorial Celebration. His face still continues to shine a light every time it hits the screen. (If the slideshow has already stopped playing by the time you make it down to this link, just refresh your screen and hit the "play" button at the bottom of the image if it doesn't start automatically).
Here is a slideshow of Hunter's Memorial Celebration. The entire day was filled with amazing amounts of love and an overwhelming amount of compassion.
Not to mention the cake Rocked the house!
This is the video of Hunter's Balloon Release. We thought he'd appreciate Lightening McQueen and Mater coming up for a visit.
We sent them off with lots of smooches and buckets of love and warmth to sprinkle over him once they arrived.
So our tribute to Hunter was, sincerely, a stellar day. It was truly unforgettable and will be held in the hearts of many as a wonderful and extremely well deserved celebration. The sun was shining and the tears were abundant, but the laughter and the love and the forever appreciation of his life, rose above all else.
Like I said in my speech, Hunter will go down in the books as a wonderful, wonderful tragedy. He lives on and will continue to light the flames in our courageous spirits, our magnificent and brave attitudes, our fearless approaches to life and adversity and in our warm and loving souls. As his parents, we couldn't be more proud of what he accomplished, the love and affection that he expressed, the laughter that he shared and the never ending flow of happiness that will continue to embrace us until the day we die.
"Rest in peace baby love. We will forever cherish you. You are truly a treasure and we will carry your beautiful spirit with us everywhere we go".
A few speeches from some of our amazing friends that have stood by our side every moment of every day.....laughing, crying, sharing and lovingly supporting.
Many, many thanks to all of the lovely guests that attended Hunter's celebration who graced us with their presence and showered us with love. Your kind words, generous feelings and heartfelt emotions that you shared with us got us through our day and will forever continue to do so.........thank you for following our journey and holding us so near and dear to your hearts. We truly feel the love.......all around us......always.
A huge and loving "thank you" to Wendy of Wendy Parker Events who coordinated an amazing event. Hunter's celebration was truly memorable and will rest so sweetly in our hearts for the rest of our lives.
Another very full of love "thank you" to Allyson and the entire Bob Gail Special Events family. They were essential in making the event as beautiful as it was.
A very loving and appreciative "thank you" to Marc and Diana Brown for opening up their beautiful home and hosting Hunter's celebration.
Sincere appreciation and love to AJ from Argentum Photo Lab. He printed and mounted all of Hunter's images that were on display. His smile and enthusiasm for life was felt in every room.
A very heartfelt "thank you" to Tom Galassi for photographing and capturing the event so wonderfully. We love you and your beautiful family dearly. Thank you for everything you've done for us and for every single smile you guys delivered to Hunter's face. He loved that train table and played with that til the very end.....such a wonderful and special gift.
Buckets of love and appreciation to Chaz Dean who arranged for the Della Reese UP Choir to perform. Wow. Truly stunning. Thank you so much for such a lovely performance.
Lots and lots and LOTS of love to Daphne for the delicious food from The Point, Erin for the"Hunter" Balms, which are ALWAYS a huge hit, Jodi for the teas, Alicia for the sodas, Maury for the yummy wine and Ric for the beautiful sounds of music you played.....I could have listened to you all day......it was lovely.
And lastly, thank you to our families. Thank you for your love, your compassion, your kindness, your generosity and for standing by our sides for the last 2 1/2 years. You are all so very important to us and to Hunter and you helped us in so many ways. A forever "thank you" full of such love and devotion from us to you.
The extremely painful and heartfelt emotions that have overtaken my body are beyond human tolerance. These last 3 weeks have been pretty unbearable and quite surreal and I’m so, so devastated, and just can’t seem to find any peace yet in our tragic ending.I hate it.I hate that he’s gone.I hate that I can’t touch his soft skin and smother him with love and sunshine all day long.I have all this love that used to go to Hunter and now it’s just building up in my body causing an immeasurable amount of pain because he’s not here to give it to…………he’s so far away from me.I feel like he’s out there all alone………wondering where mom and dad are.Wondering why we are not by is side, right next to him – where we’ve always been.Wondering why he’s been taken from us, when he did nothing wrong, in fact he did everything right.We’re supposed to be together, living this life out the way we had all imagined.We were supposed to be rewarded for all of our hard work and dedication.That’s how it works.You give it your all, play from your heart, fight with everything you’ve got…….and you accomplish great things.Our victory has been brutally taken from us and we are laying here defeated with our mouths agape……….wondering why this happened to us. Wondering why this happened to Hunter. Life used to be a little easier.And granted we were dealt a tough hand………but we were making it.We had Hunter, we had him with us, we were keeping him alive……….and that’s truly ALL that mattered.That’s all we cared about. Life, all of a sudden, has become overwhelmingly sad and extremely more difficult to live.
Hunter’s love was truly magnificent.I crave it every morning I open my eyes.I lay in our bed for what seems like hours just hoping and wishing he was still there laying next to us.We absolutely adored him.He was a true delight in every sense of the word and his vibrant energy is so terribly missed.Our house is sad and lonely and his presence, strangely enough, is felt everywhere…….yet he’s no where to be found.He’s unreachable.He’s only been gone three weeks and I feel as if it’s been a lifetime since I’ve held him and giggled with him and cuddled with him, sharing sweet and precious moments; moments that have now been stopped dead in their tracks.
This is one of my favorite videos of Hunter. He was so full of life this day. It was my birthday and he was just so tickled to help me blow out the candles. We did it over and over and over. I can't watch this video yet without getting extremely sad and angry for what we've lost. He's our sweet baby love and deserved a much better life than the one he was given.
More loving memories
Below are a couple of shots of Hunter's last amazing day. We were certain that he was healing because he was just so happy and active and enjoyed his day at the beach so very much. He struck a fever the day we got home and we were admitted into the hospital and 2 days later.......we were told that his cancer had returned for the fourth and final time. Complete shock and devastation. Just didn't seem possible.
I feel as if my whole being right now is made up of glass and at any moment, with the right dreadful combination of thoughts, I could shatter into a million pieces and I won’t have the strength or desire to put myself back together.I won’t even know where all the pieces go since my heart and mind are so tangled and torn up inside.I feel as if I am constantly running from the memories of Hunter’s last three days alive because they are so painful to remember as a mother and every time I think of them – a terrible, terrible heartache and sadness take over my whole body and I start to drown in my deepest, darkest fears.Fears that are now my reality.Because of this, I can’t be left alone too long with my own thoughts.They take me over and get a pretty powerful grasp on me………one that only Zen has been able to pull me out of.
I remember thinking and feeling and hoping that truly someday – everything was going to be alright.Now I know for sure that all of our days ahead will never truly be “alright”.We will never be “completely” happy knowing what was taken from us, knowing what we are missing out on……….knowing what Hunter went through just to be granted the chance to live.And then death comes along and just rips his life right out of our hands as if all of our efforts were for nothing.
I just can’t believe that this in now the life we’ve been left to live.
This video rips my heart out. It's Hunter's last video, Hunter's last words and Hunter's last wiggle. This is the day he died. When we woke that morning, he was basically suffocating and was unable to breath on his own. The leukemia had invaded his lungs and was taking over his entire body. We immediately hooked him up to his oxygen mask and pleaded for him to hang on. The doctors told us, based on his breathing pattern and the fact that he wasn't responding to anything, that his last breaths could possibly be sooner than later. We talked to him for hours as we held him close and tight in our arms, begging for him not to go, even though we knew it was clearly time. All of a sudden he woke and gave us his one last wiggle and one last smile. We got to hear his sweet voice say mom and dad one last time, he showed us his cars, asked for some juice and his cozy blanket.............and then he went to sleep.......and never woke up.
HUNTER'S LAST VIDEO
Hunter’s cancer actually showed it’s face in my dream the other night.It’s the first time it’s made an appearance and the first time I was actually able to recognize it.I’ve seen shadows of it before……but never it’s face.I was terrified.It was creeping around a crowded room……unexpected and uninvited.Possibly looking for me to wickedly laugh in my face, possibly looking for me to just let me know we’ve lost and to boast it’s victory.Possibly looking for me to let me know that once it gets it’s hands on something……….it’s not letting go until it gets it.My dreams are usually very vivid and real and I always wake up remembering them.I use to think that was a good thing when my dreams used to be joyful.However, I could have done without that one and the many others that now seem to haunt my nights.In my dreams now, Hunter is always dead or passing and I am unable do anything except sit there and hopelessly and helplessly watch it…………...not strong enough to kill what’s attacking him.Not powerful enough to take it down to it’s knees.Not ferocious enough to let it know that what’s mine is mine and I will guard it with my life.But unfortunately, in this terrible dream, my hands went numb, my legs went limp and I was unable to move……….paralyzed with fear, knowing it’s going to take and take and take from me what is not rightfully his.
I am looking forward to when dreams like this stop.It’s tough enough to deal with what I have to deal with when my eyes are open.Please let me get some sort of peaceful rest when my eyes are shut.I’m exhausted and feel as if I haven’t slept for the last 2 ½ years.I want the nightmares to go away.I want to see Hunter in my dreams alive and well………happy, smiling, giggling………enjoying the life he was supposed to live.That’s all I have left now……are my dreams.
The pendant I now wear every day I wake. It's got a little piece of Hunter's soul and an over abundance of love from the bond the 3 of us created. I wear it close to my heart
and will forever keep him with me.
Zen and I are in constant pain and some days just seem like a thick and murky fog.Even when the sun is shining……it feels like it’s raining.And on days when it seems like we are not crying on the outside……we are crying on the inside.It’s a mental battle like one we’ve never fought.Some days we feel like we are winning……..other days we are clearly losing.
So here we are again – having to rise above yet another challenge that’s basically been harshly thrown in our face…….unwanted, undeserving……and now having to combat it with one less warrior.It’s amazing how deep we have to continue to dig just to survive in this life.It looks as if our true colors are going to have to shine again, and Zen and I will, once again, see what we are made of.
I guess this is where Hunter will deliver us strength and courage and determination.I guess this is where we look adversity in the face with a smile and let it know we won’t go down easy, just as Hunter did.I guess this is where we do our best to survive……..the only way we know how. ….with love and compassion and an understanding that life has dealt us a blow beyond belief…….a brutal and horrific blow which will beat us down and last our entire life.We’ve now been burdened with the sadness of grief.We’ve now been burdened with the sadness of losing our only child.We’ve now been burdened with a lost love………that can never ever, ever be replaced or forgotten.And now we have to survive.We not only have to find a way to live without Hunter, but we have to find a way to live WITH Hunter.We have to find a way to live with his memories and his laughter and the joy he brought us.We have to find a way to cherish his being in a very positive and productive manner, even though what happened to him is so terribly tragic and will deliver a forever sadness that we’ll never be able to shake.We have to lock up those memories of his last 3 days and not ignore them, but only access them when we feel the strength and power to do so.We can’t allow those 3 days to consume all of our precious memories. Amazing memories that we'll hold close in our hearts and minds every waking moment.
A wonderful photo montage created by a dear friend.
Zen and I are closer now then we’ve ever been.He’s truly my best and most cherished friend.Our love has only gotten deeper and now exists on so many more levels.The intensity I feel when he embraces me is sometimes overpowering.I truly feel Hunter between us and it’s when I feel his presence the strongest.His brilliant smile and effervescent energy lit up our life and that’s what we are allowing to carry us through our darkest days.We created Hunter and we are now living this life walking the same path…..without him, with him, loving him, embracing him, cherishing him and remembering him for the wondrous soul he was.
We will continue to carry on Hunter’s legacy.We will continue to place his footprints on the hearts of all who hear about him.We will continue to change the lives of many more people walking this earth who weren’t quite sure what life and love are all about.He’s changed the lives of many.He’s made people better parents.He’s opened up the doors of love to so many children.He’s made people appreciate and embrace being alive.
We are now 5 months pregnant with our next son and are torn between anxiously awaiting his arrival and making sure enough time passes for us to truly have laid Hunter to rest.We’ll think of him every day for the rest of our existence.It would be impossible not to.He’s our inspiration, he’s our love, he’s our brightest star that is now shining on us every moment he’s in our thoughts.Our weakness and vulnerability will soon turn into strength.Our sadness and heartache will soon turn into courage and our pain and suffering will soon turn into the utmost determination to continue to live our life to the fullest, realizing how truly blessed we were to have Hunter in our life.He’s taught us and several others how to love stronger, love deeper and love with every ounce of your soul.It delivers an unimaginable beauty that will enhance us for the rest of our lives.
One of my favorite Dr. Seuss quotes that was posted recently,
”Don’t be sad it’s over, be happy that it happened”.
A beautiful video tribute created by another amazing friend
Our world as we know it has caved in..........caved in deep.......we are in a tunnel of darkness and it seems as if the healing white light is way out of our reach. In fact, it seems as if we'll never reach it.....it's going to be a slow motion chase that feels as if it will last forever. Our everlasting sorrow over these last few days has led us to believe that the days ahead of us look extremely painful, overwhelmingly fragile and completely unlivable.
It wasn't supposed to happen this fast. We've clearly been blind sided by an evil that wasn't supposed to return. His life wasn't supposed to be taken in such a short amount of time. We knew the end was near.........but we didn't think it was breathing down our necks. We thought we'd have 1 to 6 months...........we were only given 3 weeks.
I am not quite sure how or where to begin.........I don't know what is going to be too harsh to post. I don't how how much everyone can handle. It will truly damage your heart, it will definitely stick a dagger in your soul and it will forever change the way love and heartache rests in your minds.
We witnessed our child dying.
We saw and heard Hunter's last breaths.
He was in our arms when his body went limp and his life force was taken. We've lost our little love..........forever.
We begged and pleaded for him to hang on. I kept begging Zen to keep putting the oxygen mask back on his face. But he was already gone. I just kept thinking "c'mon baby, just breathe, c'mon love.........just a couple more breaths before you leave us........we just want one more smile, or one more giggle, just open your eyes......we just want to hear your voice.............one last time. Please don't go yet.......please don't go...".
And all of a sudden - our time was up.
Zen and I have seen things in the last 6 days that no parent should ever have to lay their eyes upon. Brutal images are burned into our heads and our wonderful memories with Hunter now seem to be sprinkled with the devils dust. What happened to Hunter was very cruel. It's twisted, it's gut wrenching and it's truly just to unbearable to face.
Hunter was taken by the angels at 11:25 pm on Monday, March 8th. They spread their wings, swooped down, lifted him up and carried him off. His beautiful soul was gone, his amazing and contagious giggle was no longer heard, his sweet and innocent being was no longer present and his heart that was so full of love and graciousness..........was no longer beating.
The coroner was ready to take him as soon as he passed - but we weren't quite ready to let him go just yet. We had a few more things to say to him, we had a few more snuggles to get in and we had lots more smooches to lay upon his precious little body.
We laid with him, we whispered wonderful and encouraging and extremely thankful blessings into his ear. We let him know what an amazing child he was and that mom and dad are standing proudly by his side, cheering him on, wishing him the best and most deserved journey that he was so unfairly cheated out of here on this earth.
We bathed his lifeless body and dressed him in his Iron Hunter Tee. We rocked him and comforted him and let him know that he will do nothing but rise above and put on stellar performances in his next life...........where his body will be healthy, vibrant and free and clear of all horrid diseases.
The coroner arrived at 5:30am to take him away. The moment we had feared so intensely the last two 1/2 years of our life had finally arrived. We still weren't ready to have him depart from our life. It was amazing how I still wanted to fight for the right to keep him with us.......I didn't want to accept that the fight was over. We lost. And we are now another set of parents that are leaving the children's hospital, after a battle that lasted years.............without their child.
We were slowly escorted out, along with security, as we carried his body outside to be laid on the stretcher. Our hearts and minds couldn't really take in the reality that was playing out right before our eyes. We were about to lay our precious love into a body bag.
It's an image that we will never forget.
It's an image that I can't shake and it's a memory I didn't ever want. To carry the weight of that visual seems to bury me in a mound of sand until I am paralyzed and then it suffocates me to where I am constantly trying to catch my breath...........wanting so desperately to forget it. Our reality right now is truly devastating and it hurts so bad.........so bad.
On the walk back to the empty hospital room - my legs wouldn't take any more steps and my body just gave in...........Zen caught me on my way down and we sobbed our most painful and hurtful tears and then he held me tight all the way back to the room. I vomited, we sobbed some more, we packed up our things and we left the room where our little love died.
We laid Hunter to rest on Thursday, March 11th. Once again, we felt the need to see him one more time and let him know how much he was loved. Zen and I have never felt a love so fierce and so amazingly rewarding in our entire lives. We've never fought so hard for a love that should have survived.
Hunter was a true fighter. He embraced life every day as if there was nothing to lose and nothing to fear. He had no idea what was coming. He had no idea that death was waiting at the doorstep. We are forever grateful for that. He was such a sweet soul. He was so kind and so funny and so loving. He didn't deserve to live his last days afraid. And we feel extremely fortunate that he didn't. Such a brave and courageous little soul.
Zen and I never knew how amazing love could be until we experienced the love of our child. Our hearts were consumed and full to the rim with love for Hunter. And now it's as if our hearts have died. We are standing here left by ourselves to scrape these badly beaten hearts off the ground and give them new life. And it seems impossible since our strongest life force is no longer with us.
Hunter was the single greatest experience of our lives. We have no regrets. Not one. And despite the brutal challenges and despite the overwhelming amounts of pain and suffering........we graciously and gratefully lived our life for him........and we couldn't have asked for a better king.
Hunter.......our dear, sweet, precious love.......may you rest in peace with an over abundance of love, light and smiles. Know that you've changed the lives of many and have left the most wonderful and inspiring footprint that could have ever been imagined. Mom and dad will never do anything except embrace your wonderful being and carry you with us for all of eternity. You've enhanced our life, you've enhanced our love, you've enhanced our spirits. You've made us whole and you will live on in us forever. With so much love and tenderness, mom and dad.
It's the most horrific torture we've ever had to face and we feel as if we are in a very, very sad hell right now. I, personally, can't seem to get a grasp on the pain. It's so completely unbearable and it's cutting so deep right now........every waking moment I am hurting and aching and in just plain agony. It's like constantly being punched in the stomach with steel fists. Our heads feel as if they've been slammed with a wrecking ball for the last 21 days. And our hearts are being stomped on with absolutely no mercy. I am so, so sad for Hunter. I am devastated and crushed that his beautiful life is brutally ending like this...........I honestly believed he was going to make it. I truly, truly did. I didn't think for a second that he wasn't going to champion his way through this and come out on top with an amazing victory. I am in shock. I am stunned. I am completely numb and I can't seem to think straight on most days. I sit on the floor in the shower and sob and just let the water wash away all my tears. I cry when I am pouring coffee, I cry when I look at his beautiful face, I cry before we go to sleep, and I cry when we wake up. Our life is so sad right now and I don't see how we are expected to recover from this. I feel as if we will be spiritually and emotionally wrecked for years to come, if not for the rest of our life.
We are not sleeping too well. Between handling Hunter's needs, battling our daily sadness and continuing to try to enjoy every moment that he is awake.........sleep doesn't seem to come into play. Whenever we do fall asleep.........Hunter enters all of our dreams. Sometimes he's healthy, most times he's sick. The other night in my sleep, we somehow had his precious little body and soul tucked away tight in one of his Lightning Mcqueen suitcases that he always carries around. We dropped it off a bridge into a beautiful waterfall and the immediate silence was deafening. I screamed and cried and fell to my knees and wanted him back so desperately. It was so completely horrifying and final..........amazingly unbearable and so terribly, terribly tragic.
Hunter, due to round the clock pain meds and just plain being exhausted, seems to sleep a good bit these days, which is what leaves us plenty of time for crying. This last week, he seemed to take a turn for the worse and we've just found out today that he has a pretty severe pneumonia . We've been pumping his body up with herbs and fresh vegetable juices in addition to all his other meds trying desperately to keep his cancer at bay. But it's just too strong. We've managed to get the cancerous cells that have invaded his blood stream down a little - but his body is clearly under attack. He feels his body deteriorating and gets extremely upset when he tries to get up or walk or play. The cancer has taken so much from him...........it's taken so much from US.
Many people who have been through losing a child with cancer have told us to brace ourselves. It's an unbelievable journey and something that we'll carry with us for all of our days to come. The suffering will never be forgotten and the pain will never subside. Zen and I are holding on to each other with everything we've got and are too afraid to let one another go........fearing one of us will fall.........and never get back up.
Many other amazing people have offered to take some of our pain away - if it was at all possible........and I swear to god....I wish they could. Some days the pain and heartache are so incredibly heavy.....I feel as if I can't breathe, let alone get up and try to put one foot in front of the other. My feet feel like bricks.
Hunter is our sunshine. He is our beautiful shining star that beams and brightens every single one of our days. He's our little love that we have held on a pedestal now for 3 years and we are so proud of him and how he's handled what he's had to endure. We're not ready to let go...........we won't ever be.........we don't want to and we are holding on to him right now with all of our might. Sadly enough, whoever it is - is going to have to forcefully, yet gracefully, pry him out of our arms when that dreadful moment comes.
Our worst nightmares are surfacing. Our hearts and souls and minds and bodies have been tortured beyond belief......and the worst is still yet to come.
Hunter's cancer has returned for a fourth time and we are out of ammunition. His little body has seen every type of chemo, including experimental chemo's and the most potent combinations of other chemo's, and the disease doesn't seem to want to stay away. He has been through 9 rounds of chemo, full body radiation and a bone marrow transplant.........and we are officially at the end of the road. There is nothing left that we can do to save his life.
And because this ferocious cancer won't leave his body, our most beloved and treasured gift in the whole world will soon be taken away from us. Just like that. After 2 1/2 years of battling this horrific, beastly disease - it's finally going to win. Zen and I have never felt so defeated and hopeless and broken in our entire lives. We gave up everything for Hunter and his fight. We stayed positive, we defied all odds, we loved him more than life itself.....and we are still being denied the right to keep our child. I can't even begin to explain what this is doing to us mentally. To know that we only have a limited time left with Hunter and then we will soon have to witness his beautiful spirit and amazing soul slowly leave his body is beyond comprehension. To know that the beast is just waiting at the door......with a grin on his face........and we have no power whatsoever to keep him out.....it's maddening and frightening and so, so, so incredibly heart wrenching and sad. Every single moment that we are not with Hunter, which is only when he is sleeping, we are falling apart. This is truly a tragic ending to such an incredible and heroic fight.
To speak for myself......even though I know Zen is feeling much of the same emotions, I feel completely lost. My hope has been beaten into the ground. I feel as if I no longer believe in miracles and I no longer believe that love conquers all. The wind has been taken out of my sails, the carpet has been forcefully and viciously pulled from underneath me and the brick has officially slammed me in the face - like I've never experienced before. And every five minutes - that brick continues to slam me in the face, harder and harder than the blows before. I feel dark and hollow. I feel a terrible bitterness and an unexplainable anger. I feel wrecked and extremely, emotionally distraught, and I am so, so, so heartbroken.
To know that I will soon no longer be able to hold him, or see his beautiful smiling face or hear his soft, precious voice, or caress his cherished little body is making me go insane. I wanted him with me forever. I wanted to see him grow into the amazing young man he has proven himself to be. I wanted to continue to shower him with love and warmth and tenderness the way we have in the short time that he's been alive. I so, so desperately want to keep him.
He is sleeping right now as I type and I am sitting here sobbing. Every so often, I feel as if it just can't be real......that it's just not happening. That this is just one big misunderstanding and we are, in fact, going to be rewarded for all of the pain and suffering and sadness that we've had to endure over the last 30 months. But, it's real. It's as real and as horrific as it gets. We STILL have him in our life right now and the pain is so completely excruciating. I can't imagine what it's going to be like when he is really gone. I have to grasp onto things now as I walk just to keep from collapsing..............I can't even fathom what's to come.
With all of that said - we are continuing to love on Hunter like never before. We are drowning him in kisses and holding him and squeezing him tight every single second we get. I tickle and smooch his tiny, little toes constantly. I look him deep into his eyes and make sure that he understands when I tell him that mom and dad love him so deeply and that we will ALWAYS be with him, loving him, cherishing him and applauding his amazing and courageous efforts.....wherever he is. We try to get him to smile as many times as we possibly can and are constantly figuring out ways to make his time left the most enjoyable and the most memorable......for all of us.
I guess I should take back the fact that I no longer believe in miracles. The fact that we had Hunter in our life for as long as we did was a miracle in itself. Zen has said several times and I definitely agree........We wouldn't take our time with Hunter back. He has made us better people, he has shown us love that is so deep and so fulfilling and so completely rewarding. He's made us stronger individuals and he's brought immeasurable joy into our lives. Joy that we would have never experienced without him. He has truly made our lives worth living. Zen has also reminded me that this time that we have left with him is a gift. A beautiful, beautiful gift. We know that the end is near and we now get to cherish him with every ounce of our souls.
We have an everlasting love for him that we will carry with us every single moment of every hour of every day. And when Hunter dies........a huge part of Zen and I will die with him. It will be a long time before I can look at his sweet face in photos or watch his videos and not crumble. It will be a long time before his sweet voice in my head will not bring tears to my eyes that will probably flow for days. It will be a long time before I can hear his little footsteps throughout the house and not want to follow them to wherever they lead with hopes that he'll be there smiling and laughing once I reach him. He will go pitter patter on my heart for days and months and years to come, and with each tap I will feel pain. But we've been told before and reminded often that no one cries forever. The amazing amounts of love that we graced upon Hunter and the buckets and buckets of love that I truly believed would conquer Hunter's cancer........will now have to conquer mine and Zen's devastation and pain and give us the strength we will need to press on. Our love is all we have left. Hunter is a legend and is and always will be an inspiration to thousands of people and he will live on in so many peoples hearts. He's a true champion and has shown us all how to live. Live strong, live fearlessly and live with a passion.
My brutal honesty, Hunter's life on the line and our profound positive perspective is what has lead thousands of people to follow our life, Hunter's journey and our will to keep our most cherished love alive.
Well, I have to say, that by now - I feel as if I've been staring a demon in the face for far too long..........and in my heart, I desperately want it to be over, but, in my mind, I know it will never be over. For anyone..........that's an incredibly tough life pill to swallow.
So once again, I am laying out our life on paper, in hopes of some relief, in hopes of some justification..............in hopes of some further understanding of what a terrible, terrible beast we are having to continue to fight, mentally, emotionally and spiritually.
They say that 60% of our bodies are made up of water. I had no idea that my 60% would be made mostly of tears. Tears of hope, tears of sadness, tears of joy, tears of pain. I will not deny that if I could choose a different path for our son - I would. In a heartbeat. With MY heartbeat. This potentially deadly hand he's been dealt is far from desirable. With that in mind, I feel as if there are tears that need to be acknowledged, tears that need to be embraced, tears that need to be addressed and tears that need to be forgotten.
A Teardrop falls down my face for our life and for our uncertain future with what we feel is the most precious blessing that has ever been bestowed upon us. As I've said before, and have sadly witnessed, happiness can be granted and happiness can be easily taken away.
A Teardrop falls down my face for the cherished, childhood moments that have been stolen from us that can never, ever, ever be replaced.
Many Teardrops fall down my face for the pain we've had to witness Hunter endure in the short time he's been alive. The number of times I've held him in my arms, wondering how much more I could take.........is countless.
Teardrops fall down my face for the mere thought of losing our son, day after day after day after day.
A few Teardrops fall down my face for the fleeting feelings of anger I've felt, for the sadness that has sometimes consumed me and for the fear that sometimes haunts me.
Several Teardrops fall down my face for all the memories of the little warriors, whose faces I still see, as they lost their battle to the beast whose face I've yet had the pleasure to personally mutilate.
Several Teardrops fall down my face for the number of times I wished this wasn't happening to us.
Many Teardrops fall down my face for the many lives that are devastated year after year with a diagnosis of childhood cancer. They have no idea what they are up against and how strong they have to be to fight. It's like watching your child get hit by a speeding train and all you can do is stand there and watch and hold on tight, with hopes that their little bodies will still be standing there once that dreadful train passes.
Some of these Teardrops disappear into thin air because I can't live a life of sadness, a life of anger or a life of regret. I won't. I can't. I've got the true demon to fight and between standing up and facing it and standing up with Hunter.............that takes all my strength. And that's all I'm willing to give.
Some of these Teardrops are swallowed up by the ground to be forever forgotten, because I can't live a life of pain. We've had enough pain over the last two years...........I don't want any more. I can't take any more.
Several of these Teardrops are caught in my hand because they will always be remembered and I carry them with me every single day of my life to appreciate what we've been granted.
Some of these Teardrops land on my heart, some cause bruises, some bring sweet sorrow and some bring a terrible, terrible heartache that is felt a thousand times worse than the most painful heart attack.
Many of these Teardrops fall into my lap where I will continue to hold them dearly and never let them go.
Some of these Teardrops caress my face as they fall and will forever be a sweet hand that is guiding me and allowing me to wake every morning with the hope that someday........everything, truly, will be alright.
And some of these Teardrops remain hidden on my face........for it's the forever sadness that is now a part of my life. A sadness of what has been taken, a sadness of what has been witnessed and a sadness that now has been lived.
These Teardrops, now, seem to outnumber the smiles. But soon, the Teardrops will equal the smiles, and hopefully, someday, the Teardrops will be consumed by the smiles. The sweet smiles of victory, the wonderful smiles of laughter and the loving smiles of life.......however, if and only if we are continued to be blessed with the life of our child. It is a day to day challenge, a day to day struggle and a day to day fight..........and it truly is exhausting and heart-wrenching and I feel as if my soul is constantly being tortured.
We are still dreaming of the day when Hunter wakes up in the morning without crying and actually wakes up happy........the way he used to before he was initially diagnosed with cancer. We are still awaiting the nights when we don't have to check for fevers, check for chills or make him more comfortable because of the tube in his nose or the life lines in his chest. We are still wanting the day to come when we don't have to give him 25 medicines throughout the day, just to keep him alive. And we are anxiously wanting the next three years to pass, so that we can worry less about a relapse.......hoping and praying that we don't see the demon again, whose tried to take Hunter's life from us time and time again. We are looking forward to a life of normalcy.............hopefully that day comes soon.
With all of that being said - I've smiled more in the last two months than I've smiled in the last two years. And those smiles are worth a lifetime of love.