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.
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 woke up yesterday morning feeling complete. For a moment I sat in that in between time where I didn’t know what was reality and what was a dream. I didn’t feel any rush to wake up because I was in pure bliss, holding my sweet baby boy again. In my dream I was sitting in that all too familiar Hospital room at primary children’s, holding my angel Hayesey, but in my dream he wasn’t an angel, he was very much here and fighting still.
I first found Sarah a few months after losing my sweet Hayes. It was through her social media, @AliceAndAfter, that I was able to hear about her story and her beautiful Alice. I immediately reached out to her, my heart shattered for her and I felt immense love for this person I had never physically met. We shared a similar experience that drew me to her. Losing a child is the worst thing you can have in common with someone, but it is also a beautiful connection. A thread that connects people that understand each other in a way that is deeper than other relationships. Although we lost our babies so very differently, I still feel that invisible thread with her, that pull that says, “I get it, my friend.” Meeting Sarah has given me hope and she has helped remind me that we can still have happiness through the pain and darkness. She is a shining example of finding love and light through loss. Here is her advice for still having a reason to hope.
There is no darkness more potent than that which surrounds you after losing a child. Completely blinded, it’s nearly impossible to navigate the unfamiliar terrain around you. Unavoidably, you will stumble, and you will fall, but you don’t have to be lost forever in the blackness of grief. So how can we adjust? How can we see again and move forward to have productive, purposeful lives? How can we find joy in our newly obscure surroundings? It has been proposed by many theologians, scientists and philosophers that darkness is simply the absence of light. That darkness is not an opposing force to light, but rather, the absence thereof and thus simply a void that immediately surrenders to its counterpart.
This may be true in science, but in grief, darkness is all too real. It will fight back. It relentlessly fixates on your soul, and must be deliberately and consistently evicted. To me it holds true that the only thing equipped to dispel that entrenched dimness in our souls, is light.
So how can we adjust? How can we see again and move forward to have productive, purposeful lives? How can we find joy in our newly obscure surroundings?
1.) Small bits of light can illuminate large spaces- I remember the day my daughter Alice passed away, I was completely shattered. Her death was abrupt, and unexpected. There was no warning, and there was no goodbye. She was taken from me and took with her more of my heart than I could operate without. I couldn’t see the path before me. I was completely blinded by my grief. I couldn’t imagine it. How I could endure this impossible trial before me, while also being engulfed by darkness? The answer is, I couldn’t.
I wasn’t prepared to invite large amounts of light in, but I found bits and pieces I could appreciate. I would allow in just enough to light my path. I thought about how my husband and I spent the last few days of her life home. I marveled at how my husband was on a break from school, allowing him to appreciate her last few weeks with us. I wept in the arms of my family members and noticed when they wept in return. I felt like I was walking along the edge of a cliff with only my cell phone light to guide me, but at the time it was enough to help me not fall.
3.) Allow those who know the path to guide and inspire you- The moment I realized Alice had passed away, I knew I needed to talk to my sister. I needed her wisdom and her comfort. She raced down to my home in the severe snowstorm on that January morning and held me in her arms. I took great comfort in having her near. We had always been close, but our bond had been renewed and solidified that morning because now we had both lost our oldest children, our first daughters. She also gave me hope because although she still carried her grief with her, she also had a functional life which included genuine happiness. Her rainbow baby Norah brought her immense joy that I knew I would be able to find again someday, somehow. Her circumstances were vastly different than mine, but she knew how to navigate the road on which I had never walked. She truly guided me through intense terrain that I wouldn’t have been able to handle on my own.
I also immediately joined a Facebook group called Utah SIDS Parents. I had never met these women, but they ran to my aid. They took me by the hand, and led me down the path. At times, I think they carried me. I didn’t know these women, but I could tell they were anxious and willing to help. I was afraid to open up to them. They were strangers. But I took a risk and I shared with them my darkest moments. They sympathized in a way no one else could have. It allowed me to reframe my thinking. Losing Alice thrust me into a bleak position. Even though I couldn’t see others beside me on the dark path, I was not there alone. There were other mothers finding their way alongside me.
3.) Allow the darkness its time- Just as the Earth has a night and a day, I believe that our souls also benefit from the separation, and the allotted time for each. There are moments I choose to fight the darkness in my mind with light, but there are times when I allow it to be heard. I often find if I literally schedule a time to feel the depths of my sorrow, they become less haunting in unwanted moments because I have allowed them a release. I admit, there are still times when the darkness overcomes me no matter how hard I try to suppress it. This isn’t a failure. The sun does not always shine. Allow yourself to feel what you need to, when you need to, and when it passes, try to invite the happiness.
With that said, allow yourself time to feel joy. The Earth’s brightness at noon does not discredit the darkness of the night. Your happiness will not void your grief. Embrace joy when it comes even if it is in strange or unexpected moments. Your child would want you to experience joy, and all children relish in joy. They would want your life to be filled with light and laughter and not be governed by sorrow and hardship.
4.) Take it slow- Any living creature immersed in an environment void of light becomes averse to the brightness. If you expose them to too much, too quickly, they will be blinded or they will flee. I’ve experienced this so many times in the summer when emerging from my dark basement to the outdoors. The dramatic juxtaposition of luminosity doesn’t enhance my ability to see, it inhibits it. Don’t try to force yourself to enjoy the sunniest, brightest of days, when you are just emerging from the darkest abyss. Just as your eyes need time to adjust, so does your psyche.
Losing a child is an indescribable, horrific experience. I wish it didn’t happen to anyone, but since it does, let’s help each other along the way. The road is dark, but the only way is through so invite small pieces of light to illuminate your way, allow those who know the path to guide and inspire you. Always allow yourself to time for the light and the darkness. Remember this is not a race. The depth of your sorrow will be the depth of your love, and therefore healing will take time. Be patient enough to let yourself take it slow. You will make it through, but only if you bring along with you, a light.