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
Earlier last year, in February 2017, I woke up to a direct message in my Instagram mailbox. I get lots of messages and I really try to respond to each one because so many are from parents of newly diagnosed children and I want to help them as much as I can. Waking up to a new message was not unusual, but seeing who it was from was definitely shocking. It was a message from Rachel Parcell. In the Instagram world, Rachel is a big deal! I had been following her for a very long time. Here is what it said: Read More
The trip had been in the works for 2 years. Although we were dreading leaving our kids, we have had so many amazing experiences in Europe, so to say we were looking forward to our 15 days in Spain is an understatement. Steve speaks Spanish so we were so excited to completely dive into the culture! The trip was set to start in Barcelona for three days. Read More
I remember one night two years ago up at Primary Children’s Hospital. I had spent the day in a dark hospital room while Hayes slept on and off with intermittent showings of Baby Einstein’s on the TV. I played peek a boo with Hayes and then watched as he drifted off to sleep. It was usually when he fell asleep that I began to notice that I was starving. It was about 7:30 and I vividly remember asking the nurse to keep an eye on him while I ran to grab food at the cafeteria.
It was my break for the day so I usually “enjoyed” myself by getting a Coke Zero from the soda machine and even splurged on some cafeteria sushi. You know, the real fancy sushi with the plastic green grass? Yep, I was a high roller sometimes.
On this night, I had just made my purchase and was walking slowly up the stairs to the 4th floor when my phone rang. The caller I.D. said “Primary Children’s Oncology”…I assumed it was an automated call from the oncology clinic so I denied the call and kept making my way up. All of a sudden, over the loud speaker I heard, “Will the parent of Hayes Tate please immediately make their way to his room.” I had NEVER heard this before, for any parent let alone myself. I was in a panic and ran the last set of stairs two at a time. I used my keycard to get into the unit and ran towards Hayes room.
Doctors and nurses were overflowing out his door with anxious looks on their faces. I pushed my way in and Hayes lay right where I had just played peek a boo with him 20 minutes before but now his eyes were closed and blood poured from his nose. How did this happen so quickly?!? I held his hands and nuzzled into his face with my wet cheek pressed into his. He didn’t respond. I whispered “My sweet baby boy…” over and over again as tears streamed. I listened to the doctors as they explained to me that Hayes had been unresponsive and they had called a “Code Blue”.
The next step was for Hayes to have a CT scan to rule out a brain bleed. The blessing came within an hour and the news that Hayes did not have a brain bleed but rather low platelets and an extreme loss of blood was actually a relief. Hayes had scary situations all of the time, daily and sometimes hourly, so this roller coaster of heart break was all too familiar. The blood loss and platelet transfusion were just the teeniest of bumps in the road.
We were back in his hospital room and I sat rocking him in the green pleather chair. As I held him, I cried that night at what could have been. To be honest, it still takes me right to the edge of tears. The irony is that the “what if” has already happened, but it is just a reminder that I lived that fear.
As I held him, the hum of CNN played on the TV. My mind focused and I realized what the political panel was debating. They were arguing the presidential candidates. Who would be the most honest? Who had said what in their past? Who would cut taxes?…..I wanted to throw up, I was so angry. Here these 5 people were, passionately arguing over something that really, in the grand scheme of things didn’t matter, and I had almost lost my baby boy the hour earlier.
The cancer unit is this other world. You have to go through two sets of double doors and every room is pressurized to insure that no germs can get in. It is truly the most locked down area of the hospital because these little bodies are so vulnerable and susceptible to sickness. Because of this, it is incredibly isolating and lonely. You really don’t know what the weather is outside let alone the political climate. So listening to the news that night completely disgusted me. That people were worrying about things that didn’t matter just killed me inside. How was childhood cancer not the subject of their disgust?!
It probably isn’t completely logical. I understand that childhood cancer isn’t everyone’s agenda, but during that 331 day fight, it was all I knew. It was all I could wrap my passion around. I lived the world of childhood cancer. Still, to this day, I have a hard time empathizing with political and social issues and debates. For me, none of that stuff matters. My fight is childhood cancer. It will be until there is a change. This is my forever fight, my forever “Code Blue”.
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
Let me preempt this by saying that I know I have issues. I am sure after you read this, you will probably agree with my personal assessment. Since Hayes passed away, I feel like I have become incredibly in touch with my own emotions. I am a bundle of lots of different feelings from one moment to the next. But, for someone that is so aware of my own emotions, I feel like I have become extremely detached from most everyone else’s. I almost feel like I have lost a slight bit of empathy in my life. Odd I know! I am actually embarrassed to admit it.
I remember when Hayes was fighting so hard in his bed at the hospital when the presidential debates were going on. Ugh, politics I know…but bear with me. I remember how scared everyone was. How deeply entrenched people were in the presidential candidates and I was sitting in the cancer unit with my sick baby boy, surrounded by rooms of sick children fighting like hell for their lives. I remember being so jealous of people, where politics was all they had to stress about in life.
Now, fast forward a year later and here we are in childhood cancer awareness month, in the heart of my daily rants about my complete disgust for the monster that is childhood cancer. I miss my baby boy so much, it is gut wrenching. Then Hurricane Harvey hits. I know it is a tragedy. People have lost everything…but really, have they? I was watching an interview with a family that was crying about the loss of their house and all of their possessions. They said this as their 2 year old and 4 year old played on the hotel room floor in front of them. The father bent down and rubbed his daughters head as the mother sobbed. In my skewed grief and I guess bitterness, watching him rub his sweet girls hair, I thought to myself, “You get to ruffle your daughters hair. I would trade you in a second! If I could have all 6 of my children here in my arms, but the trade off was that I didn’t have a house, I would take that deal in point two seconds.”
Now logically, I understand that they have a right to their heart ache and their own feelings of loss. It has got to be so hard and so frightening. But at the end of the day, they have their family. They have each of their healthy children. That is ALL that matters in the end because at the end of this life, you can’t take your house or your possessions with you. Up at the cancer unit of every Childrens hospital is a version of Hurricane Harvey that is killing children every day, but the horror isn’t being seen. It deserves its own state of emergency.
For those that came to my blog for my usual sweet posts, I am sorry to be so angry today. But this is grief, it ebbs and flows with everything I see and experience. Sometimes it doesn’t make sense…maybe I am actually totally crazy. I wouldn’t rule that out. In a strange bizarre way, I feel like this is my way of keeping Hayes alive and remembered. But, regardless, thanks for listening to me on my own little soapbox corner of the internet every day. It probably gets old. I can’t stop. I have walked the path that has shattered my heart. A path that few completely understand. I will forever be scooping up the broken pieces. I will forever be holding my own little telethon and relief efforts, for the hurricane that is childhood cancer. Rant over….oh wait, we all know that isn’t true, I have days and years of rants ahead of me until this disease is stopped.
I have been open from day one and I will continue to be open. The reality of my new world of grief is that I shift from sadness to doing ok to anger to everything in between. The past few days I have been angry. I sometimes feel like life has moved on without us. We are in this bubble of our home and I have zero intentions of leaving. I can’t bear the thought of going out into the outside world, where stresses are things I would give anything for. I lost my baby…8 months today. I ache for him.
Sometimes I feel like this can’t be real. This was not how I imagined my life would be. I was going to raise my six kids and stress about naptimes, carpools and school lunches. Was he ever actually here? Or was he the best dream of all time and now I have to live each day wishing for sleep hoping for that dream to return. He was here right?
I guess it gets strange in my mind because the world moves on and I have to learn how. How? I have found ways to distract myself, to slowly close up my broken heart. The foundation has become a bandaid that I am so incredibly grateful for, but I know deep down, it is just a bandaid. I am still broken inside and most likely, I always will be. I have to learn to live broken, I guess.
I have this feeling that Hayes is busy. He hardly misses me because he is discovering everything he missed. It has been 8 months but to him, I hope it feels like 8 seconds. I hope he feels no sadness for me because all I want is for him to experience joy…pure unpained, cancer-free, toddler joy. Ugh!! I miss him so much.
I have to keep reminding myself that this pain, this is life. Life is a mash up of earth shattering lows and the highest of highs. I am so lucky to have known those highs…when all 8 of us slept under the same roof. When we drove to California and Disneyland. When we would get Hayes out of bed at 10pm to play with us in our room. I have known a perfect life. I will forever have that to be grateful for. It is ok to be mad sometimes…that is just how I feel today. Sad and mad and heartbroken and grateful. I am a sad but I am a lucky one.
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!
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.