Each month, the Children’s Brain Tumor Tissue Consortium highlights the stories and contributions of families, foundations, and researchers to find cures for pediatric brain tumors. If you would like to share your story as a guest blogger, please email email@example.com
By Jaclyn Savery, Grayson Saves Foundation
The leaves are changing from that surreal green of summer to the darker hues of fall. The air, which once dripped of a humidity so thick it literally clung to your lungs, has lost its grip and has become thinner. The sun is kinder, the winds a bit more refreshing, and at the risk of being utterly cliche, you can almost smell the pumpkin in the air. It was, up until five years ago, my favorite time of year.
A few weeks ago, on a particularly gorgeous east coast morning, that you can only truly appreciate after surviving a brutally hot summer, I took a long, destination-less walk with a dear friend. The baby napped in her jogger as we took turns pushing her along the path. We talked, as we often do, in great abstract, existential ways. Somehow we found ourselves upon the topic of what happens, “After.” After the proverbial storm. After the category five hurricane smashes into land and destroys even the strongest of buildings. After the flood waters recede and you rediscover the remains of the house you painstakingly built. After the Red Cross leaves and Disaster Relief slowly vacates the damaged areas. What happens then.
This moment I am in right now; this time of relative quiet, is the moment when I have to see the price that has been paid. When I have to face, without distraction or assistance, the truth of what has happened and the reality of what remains. While we walked, I found myself rambling, my mind emptying itself of truths I didn’t even know I knew, with each step we took. There is a lot of talk, a great deal of quotations that litter my pinterest board, all dancing around the topic of who you are after a personal tragedy. I have pinned thousands of quotes, done countless mediations, clocked hundreds of dollars worth of therapy session, but honestly nothing can truly capture the reality of this moment. The moment when I find myself putting down the shield,the armor, and my fists of rage and actually looking at what remains from the last three years.
I feel vulnerable as I stand here, having to stand before the life that was forged out of crisis. I am not the woman I was five years ago. I am not the mother, nor the wife I once was. I am far cry from the daughter or sister I may have been on October 31, 2012. I am a horrible friend, when I am compared to the friend I was the day before life slapped me across the face over and over again. I forget things; I forget a lot of things. I forget birthdays and anniversaries. I forget to call and ask how your day was. I forget to offer playdates and rides home from events. I forget. I simply forget, when once upon a time, I remembered. I have run out of words. I feel like sometimes all I have to talk about is myself and so I sometimes choose to simply not talk. I get tired of the seemingly endless demand of attention my life requires, so I retract. I have lost friends. Good friends whom I thought would be here, but for whatever reason are no longer. It takes a very patient and empathetic person to stand besides someone’s pain for years upon years.
Loud noses scare me. The phone ringing scares me. I wake up from a deep sleep drenched in sweat and crying. I can’t focus in large crowds and sometimes I get lost in small groups. Certain stretches of 95N and 95S find me clutching the steering wheel so tightly my knuckles turn white. A certain back road, not far my home, causes me to hold my breath as I drive past; it is the exact location I was in when I learned that cancer had taken one of our dearest chemo friends. I turn into a complete mess with just the slightest hint of the smell of CHOP’s surgical waiting area. Smells, rooms, even certain clothes make me want to cower. In a corner of my closet is the sweater I wore the day Grayson was diagnosed. I can’t seem to get rid of it, but I can never wear it again. In the same breath, the same outfit I was wearing when Grayson suffered his lawnmower accident remains in a hospital bag in the dark of my closet. I am a strong woman, but little plastic bags containing fabric bring me to tears.
I have missed moments of Aydan’s life I will never get back. His entire third and fourth years of life are a relative blur to me. It pains me as a mother to have to even admit that. Those years of his life are a foggy patch of history I can piece back together only because of pictures I had taken. I worry about Aydan endlessly. I wonder what memories he carries. He is a quiet soul. A deep thinker, cautious, and reserved. He is also a wild bohemian, minecraft connoisseur, saucy and vivacious eight year old, but he has seen, heard and lived through things no eight year old should have to carry. So I worry about the scars that litter his heart and soul and how they will make themselves known in the years to come.
I look at Grayson and I worry with every single eye twitch, aching limb, or gait disturbance that his tumor is waking up. I often cry in the shower when I realize that while I can remember a time “before,” he does not. Grayson has no memories of his life before he was diagnosed with a brain tumor. He has not one childhood memory of his life prior. In a way that I simply cannot put into words, this causes my heart to break.
I think about Emersyn and how I want nothing more than to keep her in this little bubble of perfection in which brain tumors don’t exist. I want to keep her in that place for as long as I possibly can, but I also know that in the end, she will have to know. At the time she is learning about colors and ABC’s, I will have to tell this perfect little being what cancer means, just as I did her brothers before her. There is something dark and sinister about that fact and it causes an anger to grow inside me.
I have imaginary red circles around dates in the calendar, dates I alone understand the importance of. My brain is a minefield of dates in which the world fell apart, but yet, evidently we survived. We survived and have found ourselves at the other end of the tunnel. We survived. The “disaster relief” has disbanded. The meal train of dinners that fed my family for months upon months, has ceased. Bottles of wine no longer magically appear at my doorway from “wine fairies.” Gas cards and WAWA gift certificates to help offset the cost of driving back and forth from CHOP no longer find their way into our mailbox. I no longer spend more time with oncology nurses and staff than I do my friends. Grayson’s port is gone and only a scar remains to remind me that it was ever even there. I like to think that my parents no longer have tiny heart attacks every time my number shows up on their caller ID. I pack school lunches now, instead of hospital bags. My calendar is filled with reminders to return library books instead of appointments with oncologists and chemotherapy times. We have playdates in the park now.
So, here I am and no, I am not the same person I was. I carry a suitcase of memories/nightmares that I have to, in time, come to peace with. But, as I stand here, more than five years from the date of Grayson’s diagnosis, surveying what remains and at what cost, I see only this: We are whole. I am no less than I was that late afternoon when we first learned of Grayson’s tumor. These beautiful children that I have been blessed to mother, they are whole. They know they are loved and cherished. They know laughter, they know happiness and they feel the strength of what it means to be a family. My husband, he is whole. We are whole and in the depths of my heart, I know that now, in this season of fall, it is a time to heal, begin to move forward…and to let go.
Letting go of all the what if’s, the maybe’s and the blame. Letting go of the hesitation to live again. Letting go of the anger at the hand that my family was dealt. Letting Grayson go and live his life without my shadow. Letting go of Halloween 2012 and embracing Halloween 2017 instead of merely surviving it. Letting go of fear and accepting our life for what it is right now. Letting go of the chains his diagnosis bound us by and adjusting the way we carry its reality.