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.
I had cried like I didn’t know was humanly possible. I had been sad before, but this was complete heart break, complete devastation, and complete darkness, with no hope. My sweet baby laid sedated in the crib next to the recliner we sat in. Peacefully sleeping the night away in bed #28, in the glass room we were closed away in. He slept more calmly than I had seen him do in months and ironically he was completely unaware of the horror that had been discovered in his teeny head just hours before. I laid in Steve’s lap and we held each other the whole night, freely crying and weeping in each other’s arms. We were in the PICU, surrounded by families and parents going through their own devastations. Read More
We made it to Newport Beach. We weren’t planning this trip, but that is how life works now, we do things on a whim and live in the moment. The drive was surprisingly not difficult. But, there was an obvious missing piece as we made the identical trek we did 7 short months ago. How do I live in a world where he isn’t here? How is it that 7 months ago he was a shining light and the peace maker in our family? He was the epitome of joy! He is still our joy, but this missing piece, this hole in our hearts is so unfair and painful.
We are making all the same stops, retracing our steps. Today we stopped at the lighthouse park where Hayes went down the slide over and over again with the help of Steve and said “one, two” over and over again as he slid his froggy legs down the slide. Seeing that slide made my stomach drop. When we were here, we had no idea that our world was about to change forever on the drive home. We watched as Hayes experienced sand in his fingers and his toes. He even ate a few grains of sand and I loved it, because that is what babies do….he was experiencing life as a normal cancer free baby. It is surreal. I was so naive. I sat on the beach and felt fresh heart break. I looked to the side, and there, sitting in the sand next to our family was a bright green ball, lying unclaimed in the sand next to us. A #HayesHint, a love note from our baby. He was there.
It was then time to go to that all too familiar swing at Balboa Pier. As we walked up to the park with the swing I found myself questioning if we did everything we could for our baby. I know we did, but there was this little doubt that kept creeping in as I remembered how perfect and healthy he was when we were here. Cancer was a bump in the road, we had made it through mostly unscathed. We were the lucky ones. Tears burned my eyes and heart break squeezed my chest as memories slid through my mind of a day when life was more than anything we had hoped for. How quickly life changes! Being there was spiritual, though. I felt him close. What are the chances that his swing was empty, slightly swaying in the ocean breeze? He was there! We all held each other and cried. I reminded Bo that our hearts were remembering the love we have for him and that is why it hurts so much.
But the most amazing thing is, I feel like Hayes pushes us to do everything we do. In May, The HayesTough Foundation raised money for a brain tumor family. We found a beautiful family in Southern California whose baby girl has the same exact cancer Hayes had. She is midway through treatment and in the throws of the sicknesses that are all too familiar. We weren’t supposed to be down here, but things fell into place and now we are able to go visit them in person and give them the check from #HayesArmy in honor of Hayes….little miracles reminding us that Hayes still has a mission.
On top of that, we had no intention of taking our kids to Disneyland. We did it with Hayes in November and part of me wondered if it would be too hard and too sad of a reminder of a life that is gone now. But then Hayes acted again. A follower that we have never met sent us tickets to Disneyland as a gift. He paid for our entire family to go enjoy ourselves again. What an incredibly kind gesture. One that I cannot begin to express gratitude for. There really are amazing people in the world that are truly being a part of the good. All of which have been #HayesInspired. I have no doubt, Hayes had his hand in this.
The world is not the same without my boy physically here, but he still lives. He is still leaving his mark. I see it around every corner. In the messages I get from you all. In the hints he leaves me everywhere. In the good that is coming from his legacy! Hayes still lives and I am honored to be his mom as we retrace the steps that remind me of him. One step at a time.
It was less than a year ago, I put together this video to help raise awareness for childhood cancer. Hayes had just rung the chemo bell and our whole life shined brightly ahead on the horizon. I was incredibly optimistic. In fact, I felt guilty because my sweet baby was doing so well when so many kids were not. That is why I made this. I wanted to do anything I could to help the other kids still fighting. Now my baby is in heaven and I still feel that fight. Brain Tumor Awareness Month is quickly coming to a close. I hope I helped make you aware. I hope I taught you that childhood cancer is a common, ignored epidemic. I will keep fighting and I will try to maintain that optimism that I had when I made this video. It will be a much less naive optimism, but I will continue to hope for the kids that still fight. Thank you to everyone that has donated and helped in our fight! We couldn’t do it without you! #hayesarmy www.hayestough.org