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

Just something I noticed as I sit here trying to work.....

I've noticed that there is a natural state of sadness that rests upon my face whenever I am not fully occupied or engaged in any other activity. This has become my present "being" and it's now been this way for 3 1/2 months. Such a drastic change from what my life was like before.

I am still often in a daze and whenever I have a chance to glance off and think about Hunter or my life......my mind seems to take full advantage. It's still hard for me to focus on other people and their interests. It's still hard for me to look at other children and not wonder about Hunter and how he would have been at age 4 or 6 or 10.......or graduating from High School. It's still hard for me to fully accept what has happened and that I am a mother who has lost a child. Almost everything is.......still hard.

I'm hoping that if I were to "fast forward" and see my life a year from now.....my natural state that rests upon my face will be replaced with one that is full of hope, full of life and full of some level of happiness that we'll be able to achieve. This new child that we are about to give birth to will in fact deliver many of those things. This new love is saving Zen and I from ultimate destruction.

......an exceptional Father

Hunter's handprint his last day here on earth.

A link to Zen's Father's Day post from last year.....

wow.....our lives have totally changed.

A Tribute to Zen

Honestly, after reading 'A Tribute to Zen', there isn't much I can say about Zen, that I haven't already said over the last few years. I absolutely adore him as a father, and so did Hunter. I still remember when Zen would ask Hunter, "who LOVES you", and Hunter would very happily shout out......."DAD!" Then Zen would say, "who ELSE LOVES you", and Hunter would shout out with such excitement, "MOM!" I LOVED hearing that. I LOVED that he knew what love was, and I just get absolutely tickled that he knew who it was that so deeply loved him. We must have told him 100 times a day. He could tell by the way we spoke to him, he could tell by the way we snuggled with him and he could tell by the way we cared for him. He was always held with such gentle, yet strong, arms and we tried to never let him down and always let him know how very important he was to us.

We fought like hell for that kid.....and he was right there by our sides fighting with us - often times leading the fight. Some people have said to us that 'the apple doesn't fall far from the tree', and that Hunter got his strength and his courage and his remarkable calmness from us. I believe that. But he was also a very unique child and on several occasions, we got our strength and our courage and our calmness from him. His desire and his will to live kept us going for countless days. He inspired us on a daily basis, just by looking at us and smiling.....especially during those times when he was restricted to his bed, hooked up to lots of tubes and machines, while chemo, or red blood cells or antibiotics dripped into his body. His spirit was always glowing and his love and respect for us was always apparent. He truly was an old soul that understood life, love and emotions way beyond his years.

Zen taught Hunter many things, just with his actions alone. He always stood strong, he always represented bravery and he constantly showed his emotions and never let a day go by where Hunter wasn't fully aware of how much Zen loved him. He was there for every procedure, every scan, every chemo treatment and every other time we ever needed him to be there. He was ALWAYS there. There and present and extremely aware of what was going on so that he could assist in making the best decisions for Hunter in the next battles we would have to face. He never let us down and was such a solid force when it came to holding our family together and keeping things moving in a positive direction.

He was an exceptional father to Hunter and he's going to be an even more exceptional father to Ryder. He is now empowered with so much more love, so much more compassion and so much more understanding and appreciation for the true blessing of fatherhood. He is as eagerly awaiting Ryder's arrival as much as I am, and I can't wait to see him raise another warrior. I'm sure he will let Ryder know how proud he was of Hunter and all of his amazing accomplishments. He will pass along what a brave champion he truly was and hope that he grows up cherishing his little soul, just as we do. Ryder will be his own little being......and with the combination of influence and guidance and leadership from Zen, an overabundance of love and affection from me, and a perfect little angel sitting on his shoulder.....he's bound to be a phenomenal child.

Zen, once again, I am in complete awe of you and all that you represent. I couldn't be more honored to be your wife and to travel these rocky roads of life with you by my side. Every challenge we have had to overcome and every challenge we have in the days to come seems that much easier having you as my life partner......standing strong, standing brave and standing with an amazing amount of love. Love for me, love for your children and love for our family. I am much stronger with you in my life, just as you are much stronger with me. Together we will take on this life and whatever comes our way, and I know we will always try to champion our way to the top. And I know that if we have to go down.......I know we will always go down fighting. The only way to go.

Happy Father's Day my love.

A perfect example of Zen keeping Hunter calm during his VERY FIRST cat scan at Children's Hospital in LA. Hunter was only 14 months at the time and had no idea what the heck was going on. He followed his fathers lead and just did what he had to do.

My favorite moments of Zen and Hunter

I love my boys.

Stepping Stones

.....made of glass.....

So today is the year anniversary of Hunter's Bone Marrow Transplant. The transplant that was supposed to save his life.

This was supposed to be our 1 year mark, a celebration - Hunter's "2nd birthday". This was supposed to be when we were going to be able to worry less about a cancer relapse, and worry more about the normal things of a 3 year old child - "normal" worries that we would have welcomed with pleasure. This was supposed to be the time when Hunter should almost be back to normal after healing from what his little body just went through over the last 12 months. This day was supposed to be many things.......

We were told when he got the transplant that there was a 90% chance that the cancer was going to return. Because his cancer had already viciously attacked him 3 previous times - the odds were obviously against us. However, if we learned one thing from this dreadful disease, there is no rhyme or reason as to who makes it and who doesn't. Some kids are only given a 1% chance or survival and somehow they make it. Some kids are given a 5% chance of survival.......and somehow they make it. Some kids are given a 50% chance of survival and somehow, they don't make it. So how were we to know. We didn't. So the last thing I ever wanted to believe was that Hunter was not going to make it. In my mind - he was a fighter, his body was perfect and his organs withstood all of the toxins that were thrown his way. He was amazing throughout the entire process. He championed his way through everything. HE was supposed to make it. I'm slightly angry about that outcome.

This is the one time in my life that I can say I sincerely want to beat the shit out of something. I've often thought that if cancer had a face, I'd rip it off and torture it for the rest of my life.......with a smile - and not think twice about it. I guess this is the tormented side of me rearing it's ugly head. The defeated side. The side that should be addressed, but not given any more time than needed. I would never let this side take over and rule my days or my mind. But it's nice to know it exists.

A couple of times over the last 3 months, since Hunter has passed, I have said that our life sucks. Zen is VERY quick to correct me and say that, "our life does not suck, just this particular time in our life and the ending of our experience sucks. But our lives are amazing and we need to always remember that". So I do. What Hunter brought into our lives is unforgettable. The love, the laughter, the undying compassion and understanding. The bonding, the togetherness, the true sense of family and the overwhelming amounts of strength that we were able to witness. The strength we witnessed in ourselves and in each other, the strength we witnessed in our families and the strength we witnessed in our friends, as well as strangers. It all kept us strong and in many instances, made us feel indestructible. The times when we needed to feel love, we felt it. The times when we needed to feel powerful, we felt it. And the times when we needed to feel the victory, the victory was felt by many. They say there is strength in numbers.....and I firmly believe that. So many of us fought Hunter's battle with him - endured his suffering, endured his pain and endured his defeats. And, our army always stood strong.......til the very end, and I'm forever grateful and extremely proud of that.

These stepping stones made of glass are now our hurdles. We could chose to step on these glass stones on so many days for the rest of our lives. So many days to remember that cause significant bleeding. The day Hunter was originally diagnosed with cancer was a day we'll never forget, Mother's Day, Father's Day, his Transplant Day, the 4 different days that he relapsed, which one was on my birthday, the day he was born.............the day he died. And there are many others that I just don't have the energy to list. We could "sad" day ourselves to death. I don't think Zen and I are too interested in living out our lives this way. Doesn't leave room for much laughter. And if there is one thing that Hunter made us appreciate it's how good it feels to laugh. I don't think we would ever give that up. And we certainly won't surrender to sadness. So we'll slowly start turning these glass stones into solid rocks and step on them with Hunter's confidence, step on them with Hunter's courage and step on them with Hunter's passion and desire to always fight and live strong.

The lessons we've learned and the ways in which we have grown are only gained by experience. We constantly need to focus on the treasures that Hunter brought us. Each and every day we had with him was a gift. A gift like no other. And he was the most brilliant package with the most unbelievable bow. A package that I will hold deep in my heart on every "sad" day that there is to come. I will continue to treasure his love, treasure his life and treasure his spirit.

Zen's Thank You Tribute to Hunter at his Memorial Celebration:

To our son,

Thank you for being so courageous and strong. You endured more pain in three years than most people do in a lifetime. And yet your charisma, love for life and your spirt - never stopped shining.

Thank you for trusting and loving your parents so much. Lenore and I had to make some very hard decisions and every time we doubted ourselves for putting you through more pain - your ferocity for life told us to keep fighting. You gave us your courage and we were able to do what we had to do.

Thank you for always smiling and laughing. You gave us your energy and special light at every opportunity. At times that was all we had. We cherished every little laugh. We loved every smile. We absorbed and celebrated every moment we had with you. Thank you for giving and giving and giving.

Thank you for always dancing. The Leukemia took away much of your ability to walk, talk and even move on some occasions - but even when you were too sick to move you body, your found a way to move your soul. We called it the eyeball dance and you were always willing to perform. Your dancing, your love for music and your awesome rhythm made even the darkest of days beam with light.

Thank you for being our son. You have made the world a better place. You have made those that have read and endured your story better people. You have taught parents around the world to hug their children a little tighter. You made your mom and dad better parents. You will always be cherished and never forgotten.

"Dance in the clouds sweet baby love. Mom and dad love you so, so much and you will remain forever in our hearts".

Hunter on Versed about to go in for one of his Spinal Taps. This was before his transplant and was a check to see if he is in remission. If you look closely, you'll see a little wiggle towards the end!

Hunter's Eyeball Wiggle and Dance after his Cat Scan. This was about 7 months after his transplant.




Hunter's FAMOUS Countertop Jam.

.......time passes by.....

It's been 3 months since Hunter has passed. Feels like years. Sometimes I feel as if I never had a child and it was all just a dream. A wonderful, heartfelt, life changing dream.........that forever ends as a nightmare.

I don't ever want to erase his existence or run from my memories to avoid the pain, but it's completely surreal to think of everything that has happened over the last 2.5 years and the magnitude of what we have lost. Just doesn't seem possible.

When I think that Hunter is dead - when those particular words actually enter into my mind, it seems too tragic to be real. I don't WANT to believe it. I still don't want to accept it, yet every single day I wake, I am forced to look our reality in the face. And somehow I'm supposed to still find the strength to get out of bed and go on with my day. I find that if I lay in bed too long - I'm taken over by my sadness......so it's best to just get OUT and deal with it. Most mornings the fog settles or clears and I am able to concentrate on other things. But it is definitely a huge effort on my part. I am having to control my mind like never before and it's constantly being challenged or attacked by our past and it's an ongoing battle that I deal with throughout my entire day.

I think the hardest part is not wanting to let go. I want to remember EVERYTHING.......always. All of his little habits, everything that made him giggle, all of the things he enjoyed and everything he expressed. I find myself looking at videos and photographs just to get a glimpse of him and all of his sweetness. However, seeing his sweet face and his charming attitude and his cheerful approach to life just absolutely crushes me. I crumble to no end and my sorrow embraces me with such intensity.....and doesn't seem to let go. It's such a hard blow to my heart, my mind, my gut and my spirit. To think that he will never be in my arms again, at least not in this lifetime, is just so unbearable to believe. My sweet, sweet love.

I am still so, so sad. I still wake up and cry sometimes in the middle of the night. Sometimes I still cry before I go to sleep and sometimes I still cry when I wake up. My heart still feels as if it is broken into a million pieces, slightly mended, but so far from being healed. And my soul still feels empty. My entire being is longing for a child. Longing for the child I had and longing for the next child that I am about to have. I am desperately feeling the need to share my love.

I'm doing my best to survive and work happily towards brighter days, but sometimes brighter days just seem so far away. At least the brighter days that existed when Hunter was still alive.

I've realized that in this lovely healing process, there are things that help me move on and encourage my healing, and there are also things that hold me back. The things that hold me back are the things that I AM able to let go of....and I am trying my hardest to let myself do just that.

The things that come to mind that I am finding seem to bring me down are these.........

I can't listen to sad music. Whenever a sad, sappy songs comes on the radio or on my computer I have to immediately change it. It seems as if every sad song I hear applies to our life or our experience in one way or another. Not very much fun to constantly remember the sad times. So I choose to tune them out.

I can't click on his photos on our blogs or on facebook when they randomly appear when I'm doing updates or postings. I've found that when I do, I get locked into looking at the album they came from and it immediately brings me to tears. It makes me realize again......what's been taken from us. I have to be very selective as to when I allow myself to go there.....it brings me into another world and sometimes I can't find my way back.

I can't stare at the photos that we have up in the house of him for too long, or else I'm stopped dead in my tracks and again........fall into a huge hole of sadness. I have to just blow him a kiss and move on by. I could take them down, but I don't want to and don't think I ever will. I want his presence to remain in our home and I always want to be able to look up and see him whenever I need to see his smile.

I can't be in the car by myself for extended periods of time. My thoughts ALWAYS lead me back to him. I always find myself wanting to look in the back seat and see his smiling face sitting there looking back at me......we shared so many sweet, precious moments. Just in our stares alone.

I can't look over at the couch where he laid for the last 3 weeks of his life. I so desperately want him to appear so that I can run over there and sit next to him and put his tiny little feet in my lap. I would play with his toes all day long and we'd laugh and wiggle and entertain each other 'til we fell asleep.

I can't think of the painful memories of Hunter's last day. At least not yet. Whenever they creep into my head.........it's so terribly horrific and paralyzing........I usually don't resurface after that - it takes me away and buries me - deep, deep down under into a pool of darkness.

*********

However, I have found that what I can do......things that bring me smiles or help me move forward are these:

Making an effort to think happy thoughts. Thinking about all of the wonderful things that we've experienced since we've been blessed with Hunter in our lives. All the love he's brought into this world. All of the emotions he's brought into our life. And all of the the moments he's given us to cherish.

I can think about our future and all of the possibilities that still lay ahead.

I can make sure that Ryder, Hunter's little brother, knows what a hero he was and how strong of a fighter he was and how truly courageous he lived his life......every single day. And hope he lives his life the same way.

I can take deep breaths and continue to realize how fortunate we were to have Hunter in our lives at all.

I can make an effort to continue to find our carefree spirits and not let the devastation of our past inhibit our ability to live life or soak up everything this life has to offer.

I can appreciate the fact that I will be an even better mother to Ryder, now that I have experience and know what a true blessing motherhood really is - not one single moment will be taken for granted or ever overlooked.

I can continue to look at my husband with loving eyes, realizing how lucky we are to have one another. We hold each other up, we keep each other strong, we encourage each others fight. Our fight to survive, our fight to find happiness and our fight to live.

I can continue to hope for better moments, better dreams and better days. They're there.....within reach.......we just have to be patient and they'll come.....I know it. With Hunter's sweet blessing and beautiful spirit - I am hoping they are just right around the corner.

An image I found that brought a sweet smile to my face.