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
I get asked often about what it felt like to have 3 babies squished into my stomach. I can assure you, they were definitely squished in there. Well, two of them were squished, Hayes was as comfortable as can be. He was casually sprawled out under my rib cage while Heath and Reese packed themselves into the depths of my belly, pushing themselves head down battling for first entrance into the world. Hayes was always relaxed and happy with where he was. When I went into labor, it wasn’t a surprise when Hayes was the last to be born…the baby of the bunch. 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
It was around 11:30 on Sunday night when I started to feel that all too familiar sting…the cyclical sting that comes on those special days and anniversaries. I realized that exactly 3 years before that very moment I had been getting prepped for my cesarean. I had unexpectedly gone into labor at 31 weeks 5 days with the triplets and my OB saw that my babies were coming whether I was ready or not. 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
The past few weeks, I lay my babies down for their daily naps and inevitably, they end up talking to each other under their doors across the halls. At first it is really sweet and then all hell breaks loose and Heath is kicking the door….laying on his back, pounding the door with his feet. Yesterday was another one of those days and I found myself feeling more and more angry with each loud kick of his door….sometimes I just need a break from my kids, I will be honest! So needless to say I was frustrated. Read More
It is so interesting reading everyone’s New Years resolution posts about a desire to simplify. A desire to purge their homes and lives of unnecessary things. That has been my life for as long as I can remember. I was always taking things to Goodwill and felt zero attachment to inanimate objects and things. I lived the simple life & put all of my attention into decluttering, reorganizing and simplifying. And then Hayes got sick.
Now, I can’t get rid of anything. I am now the lady on “Hoarders” that can’t get rid of a pencil because someone she loves looked at it once. For reals, I am that lady! I can’t get rid of anything. I have closets of baby toys, clothes, blankets, medical supplies, used binkies and even hundreds of blurry Hayes pictures on my phone that I refuse to let go of because they remind me of Hayes. I will look at a shirt and think, “I can’t get rid of this….it has been over a year since I wore it, but I remember I was wearing it when Hayes got done with surgery. I held him in this shirt!”
While I completely recognize that there is no rationalizing this, I am at a stage of my grieving process where unorganization and fear of getting rid of something important is at the forefront. I worry so much that getting rid of that shirt I wore is like getting rid of him. I hold onto anything that even remotely ties itself to Hayes. Anything that ties me to Hayes. The very thought of losing these sends me into a panic.
I was really starting to wonder if this was the new me. But as I was laying in bed tonight, I was scrolling through Pinterest and a “Stages of Grief” diagram showed up in my feed. I looked through it and realized I am at one of the stages. Ugh! I am in a “stage”.
As much as I am annoyed by this current stage, I continue to embrace the emotions that come and go. I definitely feel a patience with myself that I haven’t had in the past. I hope to get to the point where I can just hoard the emotions and not the things. Hayes is in my heart anyway….not in that sweatshirt I wore almost a year and a half ago.
I also recognize that this diagram is not a one size fits all. I have found comfort in reaching out and watching others in their own loss journey. I met Carlie when Hayes was in his second round of treatment. I spotted her and her husband across the hall with their newly diagnosed little boy that looked exactly the same age as Hayes. As it turned out, Cohen was the same age and Carlie and I bonded over our similar situations. I cheered with her when Cohen did well, my heart broke when she received bad news and I was completely devestated when she also lost her little boy to this terrible disease and as a result becoming a sister in this unchartered territory.
Carlie is a women’s nurse practitioner and certified midwife that shares her journey on her blog, Carlie the Midwife. She gives incredible advise and shines a light on her own loss and women’s health and laces it all with well timed humor. I adore her! Her post on grieving the loss of a loved one felt like it was a page ripped from my own heart. Feeling grateful that I don’t have to venture into loss alone.
Read more about Carlie:
When our oldest, Bo was 2 years old, I remember him getting a whole bunch of hand me down clothes from his older cousins. We were poor college students so getting “new” clothes was really exciting. In the bag of clothes was a pair of toddler, khaki cargo shorts. Perfect fit for my buddy. I vividly remember him reaching his chubby little fingers into the pocket of those pants and discovering a little boy treasure. He pulled out the teeniest, little 1/4 inch monkey figurine from his pocket and beamed with pride as he studied it. I laughed that something so tiny had survived the trip….like a baton pass that Bo was accepting.
I knew that little guy was going to be lost in no time. How could something so small survive? Especially when we lose large toys on the hour. Well, throughout the years, through many moves, from different states, houses and children, that little monkey mascot continues to pop up. Just yesterday as I was cleaning out the toy box I found that little guy for the thousandth time. I took a picture of him, sent it to Steve and threw him right back into the pit of toys to get lost for another few years. That monkey continues to surprise me. When I saw that little figurine, it got me thinking.
As I head into a new year, I obviously do a lot of reflecting as I am sure most people do. I try to set goals, but, the new year to a grieving mother means another year of missing her child. And I do miss Hayes so so much! It doesn’t get easier and it hasn’t gotten less painful. The hard moments have become less frequent, but when they hit, they are more intense than ever before. Did I mention that I miss him?! So how do I push for any goals when I am consumed by missing my boy?
I was reading an article written by another cancer mom. She is in the heart of her child’s battle and she angrily expressed that she was not going to advocate for the government to fund “More than 4” because it doesn’t work. She was extremely bitter, and part of me totally relates to that. But another part of me realizes that I can’t let bitterness win. I have a lot to be angry about, but I have so much to be grateful for. I also am not in the heat of the battle of childhood cancer so I can view the fight with renewed strength and determination. From a new perspective of someone that has been there.
I have lost a child. I can choose to collapse and never stand up again or I can declare war on the enemy that took my child…CANCER. Because of my new perspective, I can be their voice. The voice of thousands of mothers and fathers that can’t leave their child’s hospital room for fear of something happening if they leave the room to go and get a bite to eat. The voice of the thousands of parents that have the secret, never uttered fear of “what if’s” that could happen to their child running through their head. The voice of parents that don’t want their spouses or children to see them cry so they save their silent tears for the hospital shower. And the voice of thousands of parents that are told they are so strong but they feel shattered and broken inside. I will be their voice!
So, with all of that being said, what is my New Years resolution and what does that random, tiny little monkey have to do with anything? I am an advocate. I am a soldier. I have no other choice now because this is what helps me feel that Hayes did not pass in vain. Will signing that petition for “More than 4” make a difference? Will flying to DC and talking to members of congress change anything? Honestly, I don’t know, but I have to try, because I am the voice of those thousands! And more than anything, I am the voice of my angel warrior Hayes. I refuse to allow him to be silenced! For all of them, this year is for you and probably next year and the year after that until all of this changes. I will not be stopped. I hope I continue to surprise people. Like that little guy, I may be one small person, but I am not going anywhere.
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.