I have been doing so much thinking lately about the many tragic childhood losses I have witnessed as a result of brain tumors. After seeing my dear friends lose their 3 year old son Crosby to an undetected brain tumor, I felt incredibly defeated. Almost like all of a sudden I was putting up my hands in defeat….waving the white flag to cancer. I was talking to my mom on the phone and in confounded tears I admitted that I don’t know if it is possible to “stop” or “cure” or “early detect” brain tumors.
Today is May 1….the first day of Brain tumor awareness month. While I don’t intend to celebrate brain tumors, I don’t want to harp on depressing facts. We know brain tumors are depressing and devastating and I will share facts, but my goal is also to show that there is always hope and there is always a silver lining in this journey of life. During the month of May, every penny donated to the HayesTough Foundation will be donated to a brain tumor warriors family. Let’s spread kindness! Let’s spread hope!
My sweet friend Bianca Merkley is an incredibly talented singing artist and she has graciously given her talents to this cause. Her song “HOPE” is available on Bandcamp. You can download the song and choose the amount you want to donate. Whether it is 50 cents or more, every penny goes to a family in need. What I love about this song is that it’s intended to provide hope in all times of trial. Whether it is financially difficult times, marital troubles, miscarriage or cancer…we all have a story, and we can all use hope.
So gift this song to someone that needs that silver lining or gift this to your mom for Mother’s Day! Or gift a HayesTough shirt to someone that loves awesome shirts 😉! Let’s raise more money than we have before! And let’s gift hope to a family in need! We are #hayesarmy.
Link to purchase Bianca’s song.
Link to Donate.
Link to buy HayesTough merchandise.
I remember this one particular evening during treatment. I went to the Ronald McDonald Room, a large room on the 3rd floor of Primary Children’s Hospital where food is donated by organizations and restaurants for parents of sick children. Hayes had gone to bed and dinner was being served. I made my way down there so that I could have something besides cafeteria food. You walk into this place and no one is smiling…it is SO depressing. But I was desperate for some non-hospital food so I got my dinner plate and made my way to a long table with 3 other parents sullenly sitting in silence. Read More
I remember the day Hayes was given an official diagnosis so well. I was upstairs in my closet getting dressed when my phone rang. Read More
It was two years ago, right before the 5K and the babies first birthday. We were finishing up Hayes’ second round of chemo and I was still feeling naively optimistic. All I cared about was getting out of the hospital for the 5K and celebrating the babies. Hayes was sleeping in his hospital crib and I was sitting on the fold out plastic couch in my daily “uniform”….sweats. We were in the corner room of the cancer unit. There was a double door to get into our room and you couldn’t hear a sound. We were completely closed off from the world in our little corner that overlooked the Salt Lake Valley. Read More
I recently read the beginnings of a memoir by a 46 year old man that was diagnosed with endocrine cancer. As different as my situation is, I related so much to the cancer experience of this man. The journey from symptoms to discovery to diagnosis….I have walked that path. But as a mother as opposed to the patient, our paths diverged. As I read him describe his “painful” chemo cocktail of etoposide and cisplatin for 3-4 months, tears began to burn my eyes. Not only did Hayes have those exact “painful” chemo drugs, but he also had 8 more chemos over the course of his 8 Month protocol. My sweet 10 Month Old Baby was exposed to those same drugs and more. It was our only option, but as parents you do anything. You do anything to keep them safe and comfortable while at the same time, knowingly giving them poisons that nearly kill them, day after day. But that is our only hope. It is the only weapon we have to fight the monster that is just as relentless as we are.
Looking back over the battle we had, I realize that during that fight, I really didn’t recognize the magnitude of what we were facing. I was devastated and scared, but every day I clung to the hope that chemo would fix my baby. Having hope was the only thing I had control over and I unceasingly held onto it.
I remember so vividly what I was doing a year ago today. It was Halloween of 2016 and Hayes was Home. I woke up early, got my kids in their costumes and excitedly dressed my 3 babies in their themed carnival costumes. Life was beginning to “normalize” and I had nearly let go of all the fear of cancer I had accumulated over the past 8 months. Although Cancer was in the rear view mirror, a deep, hidden part of me knew I was forcing it away; running from the monster that would forever stalk us. But, I ignored it and I have no regrets about my denial…it allowed me to feel peace and happiness and joy which my family so desperately deserved. Life was blissfully naive for a few short months.
I feel like my life is mostly in black and white now. I still smile, my kids still smile and there is laughter. But, that rich deep feeling of life that is seen through saturated color is not felt very often anymore. I sat through my kids Halloween parade today and watched as my kids marched through the halls of their elementary school, proudly showing off their costumes and my babies danced to the Halloween music playing over the loud speaker. I smiled as the scenes unfolded before me, but then it hit, it always does, that Hayes should be here and the magic of another holiday vanishes. It is painful. Steve and I always smile for our kids, but deep down, we want to hide. Sleep away the winter that brings with it all the painful reminders of our sweet angel boy.
I don’t like to focus on the pain, I really don’t, but this is also our story. Life isn’t easy, unfortunately. But, in a strange juxtaposition, what gets me through these hard days is hope. Hope for a brighter future, hope for a happy tomorrow & most of all, hope that I will see my Hayesey again. Hope is what got me through that original fight and ironically, it gets me through my days without him now. I will continue to slap that smile on my face with a hope that one day it won’t be so forced. With hope that one day I will be able to have a life where Hayes is simply a warm, happy memory and not a painful reminder of loss in my heart. Until then, I hope.
There is no question that in the moment Hayes took his last breath, a part of me changed. It felt like a part of me died, and they had forgotten to bury me. To be honest, so much of grief is just surviving. Day to day, hour to hour, Minute to minute and moment to moment. I have a lot of moments left to survive in my life. Read More
I woke up yesterday morning feeling complete. For a moment I sat in that in between time where I didn’t know what was reality and what was a dream. I didn’t feel any rush to wake up because I was in pure bliss, holding my sweet baby boy again. In my dream I was sitting in that all too familiar Hospital room at primary children’s, holding my angel Hayesey, but in my dream he wasn’t an angel, he was very much here and fighting still.
I remember so clearly, I was 12 years old when a dear family friend’s 9 month old baby was diagnosed with a brain tumor. As a child, I did not understand the devastation of the news. I assumed she could get help from the doctor, maybe have a surgery and all would be well. When this sweet girl passed away 9 short months later, I was so sad for the family. They had 4 other children and I remember thinking, “Well at least they have other kids at home to make them happy.” Throughout the years, this family slowly closed themselves away from the world. We no longer saw them as often and the friendship fizzled because the family moved away.
I remember being confused by the way they handled the death of their child. “Why are they so devastated if they have 4 other children to fill the void? I know what it is like to lose someone I love, I lost my Grandma. It is sad, but I am fine now. Plus, their little girl really must have been special and had an important mission to fulfill, because God needed her close to Him.”
As the years went by, I can say that my viewpoint and understanding of their reaction really didn’t change much. I always knew it must be devestating, but I couldn’t comprehend what it must feel like to lose a child.
Heartbreakingly, I now understand that very pain and I wish with everything I am that I didn’t know this devastation. I remember when I came to the realization that I was losing my Hayes, I finally understood that family. Everyone handles grief differently, and in all honesty, I completely understand every single emotion they had felt. Their way of grieving was anger and depression and I have felt both of those and still do often. It comes in waves. Some days I feel grateful for my life and other days, I can’t lift my head off of my pillow and cry the day away. It changes day to day and moment to moment. I respect every emotion because that is my love for Hayes making its way to the surface.
I recently had someone ask me what they should say to a friend that had lost their daughter in a tragic accident. I told her to just let them know you are so sorry for their loss. If you don’t completely understand their pain, do not try to make them feel like you understand by telling them about losing a grandparent or an uncle. It isn’t the same. It is sad, but it isn’t the same. When people reach out to me and tell me they understand because they lost a grandparent, I immediately feel hurt. I have lost grandparents also….it does not even come close to touching the gaping hole that I now feel in my heart. Losing a child is a pain that is unequivocal to any kind of possible pain because this being that grew inside of my body, was connected with my soul on a deeper level than anyone ever and now, that person is no longer there for me to hold, to smell, to touch and to see. This huge part of me is ripped open. My baby didn’t get to do all of those things that my grandparents and your grandparents got to do. Hayes’ life was mercilessly cut far too short. It is not the same!
I also told my friend to please not tell these sweet parents that their child is in a better place. When you lose a child, it is impossible to imagine that there can possibly be a better place than a mother and fathers loving embrace. I believe in God, I know He has my sweet boy in His arms, but I have a belief in my heart that my Father in Heaven is devestated for me because He knows the pain of losing a child. He knows the pain in my soul. He knows my Hayes should be in my arms.
The last thing I told her not to tell this family was that they were stronger than her. That she could never handle the loss of a child. What other choice does a parent have? When you say they are stronger than you, in that moment, they feel like people don’t realize how much they actually love their child. When someone tells me I am stronger than they would be, I feel guilt. I question my strength. Just because I smile doesn’t mean I don’t cry. Just because I laugh doesn’t mean I don’t wail in heart break. And just because I get out of bed each day does not mean I am moving on. Grief is different for every single person. There is no right or wrong way to react. “Grief is the last act of love we have to give those we loved. Where there is deep grief, there was deep love.”
I guess what I am getting at is that it is easy to judge when you don’t completely understand. I have been there. All a family wants to know is that their child is still loved because that child still exists. Their child will not be forgotten and Hayes will not be forgotten! Thank you for understanding and allowing me to express every emotion I feel. I am grateful for you. This journey is easier because you all have lifted me and carried me through the pain.
My stomach had been a bundle of nerves in anticipation of these moments. I was nervous. This place was a place where 7 months before, life had been beautifully perfect. Our kids had played in the sand, the babies had climbed on the playground and Hayes had swung in the swing, tube free and cancer free for a moment. Our lives had culminated to that day on the beach with Hayes and pure bliss and the true meaning of life was felt. I was nervous. What if we never feel that again? How can we possibly feel that ever again without Hayes?
We walked up to the beach, the one that now belongs to Hayes. The beach is on Balboa and there is a playground right on the sand. A row of swings is lined up along the side and during the day, it is usually hard to find an empty swing. This day was no different. All of the swings were packed with parents pushing their happy kids. But, there, in the center, was Hayes’ swing, sitting empty and lightly rocking in the beach breeze. He was waiting for us. His soul had pulled us back.
It was a quiet, peaceful feeling. A part of our family will always be there. We cried, we hugged and we talked about our sweet boy. Bo was touched more than I had expected. Our older children seem fine but sometimes it hits them and thankfully, they let it out. Bo cried in my arms and was my little boy for a minute.
One of the reasons we started the foundation is because we want other families to experience the joy we felt in California. The Make-A-Wish foundation is so amazing and does so much good for the world. But, a little known fact is that they don’t grant wishes for children under the age of 3. But cancer affects the whole family, so a huge group is neglected and forgotten. We hope to fill that gap. We have been able to help several families already.
The next day, after the beach, we had arranged to meet a family I had found on social media. The Ellis family has a little 16 month old baby girl that has Choroid Plexus Carcinoma which is exactly what Hayes had. She is being treated at the Children’s Hospital of LA. We arranged to visit them and it meant so much to us that they welcomed us into their lives for a moment. We had raised money for them during the month of May, brain tumor awareness month. Gifting them a check and telling them to make memories with their children made all those painful, fresh wounds worth it. Hayes wanted this! I feel like Hayes directs us to those kids and families that need us. He has the wheel, I am just sitting there while he directs me!
That day I received a message in my inbox. A follower I do not know reached out to me and asked me if he could gift our family tickets to Disneyland. To be honest, we hadn’t planned on returning to Disneyland anytime soon. It was still too fresh, but once again, it wasn’t up to me. I truly felt like Hayes was giving us the go ahead. He wanted us to return. The next day we went and it felt like one HayesHint after another. A Mickey sticker on the cement, Mickey ears found unclaimed for Mia, a tiny Mickey Mouse bead on the ground, walking into a shop and seeing a Disney “H” on the ground, getting the green car on our first ride, seeing two separate sets of triplets, and lastly, seeing a butterfly land on the Mickey Mouse hat of the man in line in front of us. While all of these may seem small, I felt like it was our sweet Hayes, encouraging us every step of the way. Love that boy so much for the joy he continues to give us.
Newport was so perfect. It will continue to be a Mecca that we return to every year, in honor of our Hayesey. Our plan is to return every November, a yearly trek to honor our boy and recognize the happiness he gave and continues to give us. How lucky are we that he is ours?! We know him, we love him and we now live for him. I feel hopeful that although he isn’t here, he will continue to give us opportunities for bliss, memories and hints. Those are the truly meaningful moments of life!