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.
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.
The cold hard truth about the fight against childhood cancer is that when a child gets cancer, the whole family gets cancer. Looking back, I can’t begin to explain how amazing it is that we made it through. We are wounded and heart broken, forever changed, but we have lived to tell our experiences. I am always told how strong I am, but honestly, I couldn’t have made it through without Steve. To so many of the dad’s fighting for their children, I know it feels like they have been forgotten. They don’t get enough support for the pain they also experience. Steve is a warrior and he experienced the cancer fight in a different way than I did. Here is Steve’s perspective….Hayes’ cancer journey through Steve’s eyes! I am so proud of him and forever honored he is mine.
A Dad’s job is to solve the issue, take away the pain. For the first time in my life I was unable to do that for one of my kids. In fact, for the first time in my life I was unable to just fix it. I feel like I have always been able to succeed at whatever I have put my mind to. Whether it was with sports, with my career, or parenting, I have had the ability to overcome any obstacle. But not cancer. I felt helpless when I sat with Hayes. It was the hardest thing I have ever had to do. I would sit and watch him go through the pain of the side effects, with fevers of over 103 degrees and my hands were completely tied. I couldn’t just take it away. Hayes and I shared some incredible moments together, some of which I have never shared with any of my children. I think Hayes understood that I craved the need to help him, but he also sensed that I was doing everything in my power to help him.
Life was exhausting. I stayed home with the kids while Savanna stayed overnight at the hospital. Those were loneliest nights of my life sleeping in my bed by myself without my wife and one of my children. I usually couldn’t sleep until around 1:00 am. I had nobody to talk to or decompress with, so falling asleep was always so hard for me. I would wake up at 6:00 am so that I could shower and get dressed before the babies woke up. They typically woke up around 6:45. I would get them up, change their clothes and feed them while the older 3 kids got ready for school. I made sure the kids were ready, dressed and fed before 8:15 am. My Mom would come over to watch the babies at 8:30 while I left for the office. My drives consisted of a lot of tears during my 10 minute commute. They were tears of complete exhaustion, both physical exhaustion and mental exhaustion. I would then have appointments til around 3:45 and head straight to the hospital to be with Hayes. I craved those moments of hanging out with Hayes until around 10:00 at night. When I was in the room with Hayes nothing else mattered. It was my own little world with just me and him. This is where we bonded. We talked, we played, we laughed. We laughed a lot. I would feed him fries and roast beef sandwiches while we watched his favorite television shows on repeat. Despite barely being able to keep my eyes opened from my full schedule, these were the best days of my life and I miss them. I miss those days. I crave those days.
I still find myself finding things to do at home after work so that I can fill that void. It’s amazing how slow 4 hours goes by after I get home from the office. There’s not a day that goes by that I don’t wish I was up at the hospital with Hayes. I know that sounds weird, but I miss that daily grind. In some ways, that daily grind kept my mind occupied. It allowed me to concentrate and admittedly, even though I was in basic survival mode, it kept me fighting. It allowed me to feel as though I was “solving” the problem, despite not being able to take his cancer away. It was the only way I could feel “accomplished” as a Dad, because the guilt of not being able to solve the problem was extremely heavy.
I have now had to re-route my fight to keeping Hayes legacy alive and honoring him. I have also had to learn to occupy my mind and energy through the various kid’s activities, coaching football, writing my book, and running my usual 2 miles every morning.
I have mentioned it before, but there is a cancer club…a club I wouldn’t wish on anyone, but it exists, nonetheless. Whenever I find another cancer warrior mom, I try to reach out and send her a letter. It always starts out with this same line, “Welcome to the club…I am so sorry you are now a member. I know you don’t want to be here and I know you are heartbroken. I have been there. Still, I promise you that you’ll one day be proud of the journey you are on. You’ll celebrate and grieve alongside those who are a part of this same club, for you are now parents of a child with cancer. You are never alone. You have an army behind you!”
I reached out to one of these moms recently to get her story. I wanted to get a different perspective, outside of my little Hayes. I asked her to write about her experience and I just cannot begin to say how much I relate. I wish I didn’t…frankly, I wish no one did! But we do, and it is important not to turn away because all of these stories deserve to be heard. All of these children matter. I feel honored to share the story of Brendan Peck from the beautiful perspective of his mom, Kerry Peck.
Never Say Never
I must be a slow learner. All my life, it seems, I’ve made statements that have come back to haunt me. Comments like, “I’d never marry an attorney!” and thoughts like, “If I had that many little children, they wouldn’t look like homeless waifs!” (Yes, I arrogantly thought that after seeing a bunch of runny nosed, PJ-clad kids dropped off to be tended while their mom scurried off to a doctors appointment.) Well, I should have known better. I did end up marrying an attorney. (Although, in my defense, he decided to attend law school after we were married.) And I did have nine beautiful, runny-nosed, PJ- clad children who grew up happily running around looking like homeless waifs. You think I would have learned to never say “never.”
In October 2015, our 11- year- old son, Brendan, suddenly lost the vision in his left eye. During the previous week he had suffered a few severe headaches and had even thrown up suddenly one day without any apparent reason. A doctor’s visit, a quick check by the eye doctor, and a rush MRI found an aggressive tumor filling his sinus, pushing through his cribriform plate, pressing on his optic nerve, and getting dangerously close to his brain. Thus began the demolition of all of the “I could NEVER. . .” thoughts I had ever had, starting with, “I’m glad we’ll never have to deal with cancer.”
Everything I ever thought I could never handle stared me in the face during the next 10 months. I watched my child go through two major sinus surgeries, one eye surgery, one craniotomy (brain surgery to remove cancer from the dura,) and a neck dissection to remove strings of cancerous lymph nodes from his neck. I watched him suffer through two bouts of excruciatingly painful meningitis. I suffered with him as he endured five recurrences of C. diff infections, two LifeFlights, five rounds of chemo, six+ weeks of radiation treatments, and one seizure. (Yes, I may have made a comment that sounded something like, “Well, I’ve learned I can handle a lot of things, but I could never handle a seizure.”)
After I found out we could both live through seizures (not to mention brain surgery), I think I learned enough to keep my mouth shut. I never voiced another “never.” But there was still just one, terrifying, unspoken “never” shoved into the darkest, farthest corner of my brain. I knew I’d never say it, and even thinking it felt like a betrayal of faith. But occasionally, unbidden, the thought crept out of the darkness and tried to be heard. “What if my son died? Could I handle that?“ I didn’t want to answer that question. I didn’t even want to ponder it. I never wanted to find out if I had that kind of fortitude. So back that thought would go — banished from the conscious realm once again.
Six months later, when Brendan went from being declared “cancer-free” to being re-diagnosed with metastasized bone cancer, I knew I finally had to face the ultimate “Never Say Never” question. Ready or not, I was about to find out what I was truly made of — and what I truly believed. I found that death staring you in the face shakes you to your inner core. It sifts out all the unnecessary things in your life and leaves only the things that matter most. I never said out loud that losing a child was the one thing I could never do, but I wasn’t sure how anyone survived something that trying. As I finally had to face the worst “I could never” question, I opened my eyes and my heart to see how other mothers had survived.
I returned to stories I had learned about my family. I knew that all of my grandmothers and great-grandmothers had lost a child, some more than one. A farming accident, a blood infection, cystic fibrosis, pneumonia, and typhoid were just some of the things that had taken their children’s lives. I saw how they continued to live and love despite their broken hearts. As a child I had only seen them as “old.” Now, I was looking at them as one mother to another. I’m grateful these grandmothers shared their experiences so I could learn that even the death of a child is survivable.
Then, I began looking more closely at mothers around me. As I looked, I saw mothers everywhere that had endured, survived, and even thrived through all the “I could never. . .” scenarios I could ever imagine. They seemed so strong. I watched as they moved forward through their pain with faith — promoting causes, helping other families, and sharing what they learned from their experiences. And I saw love and empathy. Lots and lots of it.
How did I survive the death of my son? My beautiful, precious child? I don’t know. I’m not sure you ever do. Most of the time it’s just a matter of putting one foot in front of the other. Some days I wish there was some way to get rid of the terrible hurt in my heart. Other days I’m so full of gratitude for life and being able to live it with family that I can’t contain all the joy. But every day I’m grateful I had Brendan in my life and that he taught me courage and faith in the face of challenges. And I’m always grateful that he and others showed me the way past “never.”
Of all I have learned, I found that you do what you have to do, and you can always do more than you think you can. The saying is true, “You never know how strong you are until being strong is the only choice you have.” And, of course, I’ve learned to never say “never.”