I recently ran into an old friend at a restaurant. She was celebrating her birthday with her friends and I gave her a celebratory hug. She simply replied that she was just relieved that she was still in her 20’s. It got me thinking…how do I feel about being in my 30’s? How do I feel about aging? How do I feel that my friend basically dreads being my age? Legitimately my stress with aging is disappearing by the hour. Read More
Hi everyone…I feel like it has been a while since I introduced myself…like really introduced myself. Do you even know who I am? How did you find me?
You know how they say grief is like the ocean? I have hit that point in the waves where I want to run away with my family. I literally day dream about selling all of our valuables and our home and moving to a remote tropical island and living off the land with Steve and my kids. A place where shoes and brushing your hair is completely optional. To get away from the heaviness of the world. Don’t panic, I won’t, because the logical side of me is still very much intact. But, part of me wishes I were that brave because my family feels closest to Hayes near the ocean. It feels like home. Read More
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.