It was the fall of 2001. We had graduated, gone on our senior trips and were both now living in Logan, Utah. A small town an hour and a half north of our hometowns. We both decided to live in the dorms. Steve was living with two of his buddies from high school and I was living with 5 random girls that I had never met before. We lived a short walk away from each other and needless to say, we were making that short walk multiple times a day! Read More
I remember when my giant of a man child, Bo was a baby. He was the first of my six kids and basically my “trial & error” child. He came out literally 10 pounds, not the figurative, “Yeah, my baby was huge. He was practically 10 pounds”. No, he was literally 10 pounds 0 ounces…to put that into perspective, he was 3X bigger than Reese was when she was born. He was so big that my siblings called him “Uncle Bo”. He was my stay puffed marshmallow man! As a result, Bo was hungry 126% of the time. Read More
I have something to admit. Remember a few weeks ago when I said I had gained the courage to take Hayes’ crib down finally? Well, I have a confession, I just moved his crib to the opposite side of the room. I couldn’t bare to take it down so I just moved it in front of Heath’s closet. I literally had to shove it out of the way every time I needed to get clothes for Heath. So at least twice a day. But, I just couldn’t do it. The thought of taking it down felt like letting go of my baby. The guilt has been overwhelming. 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.
A little over a year ago, we had just finished treatment for Hayes. It was August of 2016 and we were finally together as a “normal” family that was recovering from 8 months of separation and treatment. We were desperate for normalcy, our kids were desperate for joy. I remember it was a Sunday afternoon when Steve came down the stairs with a huge smile and an idea. He was holding an old pair of childrens lederhosen from my childhood and said he wanted to dress up the babies. We put Heath in the outfit first and it hit me, he looked like he was straight out of the movie, The Sound of Music, and a vision was born….Baby Dress Ups!
Every Sunday, we would come up with a new theme and dress up the babies. The kids began to smile again and it was like we were healing with laughter. It was something we looked forward to every week. I had no idea that these pictures would become so much a part of our lives and I was even more shocked when Huffington Post Canada picked up our story. I hope that our makeshift, home made costumes will be something that brings a little smile to our hearts forever…priceless memories that will forever be documented for generations. Once again, a reminder that joy is found in the simple moments in life.
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.
In the past 2 weeks, at least a part of our family has been in Idaho, Nevada, Arizona, California and now Colorado. We have gotten Brave in our adventures and we have figured out things that work for us when it comes to managing toddlers strapped in a car seat for hours on end. I love that we have become more adventurous, but like anyone, we have moments where we want to pull our hair out. These items at least help buy us a few minutes here and there of quiet. I throw in a lot of technology, but I am a big believer in “Why Not?” When you all have to survive in the same stinky and cramped place! I load up our iPads and pretty much encourage my kids to watch endlessly! 😂
This portable charger is an absolute must. Pretty much your road trip life is over without one! I love this one because of the built in cables. We actually have 3 because we use them constantly…. now that I actually put it down into words, I am kind of embarrassed with our love of technology.
Ok, so these next two items are random and weird, I know. Just have an endless supply of both on hand for your toddler and I swear you will thank me later!
This last item is obvious, but the reason I like having one is because I absolutely despise feeling claustrophobic in a messy car. I like that the kids have. Place to throw away all their garbage. Plus this one comes with bags!
Only because I can’t seem to stay home for more than a few days at a time, I would love to know what I am missing! What are your secret weapons for traveling?
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!