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.
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.