September is Childhood Cancer Awareness Month. This month we will feature guest blogs, from several parents who have heard the horrible phrase, "Your child has a brain tumor." Those few little words have a lifetime impact. It changes who you are, and how your view the world. We have to make it ok. We have to find peace, in this awful world of chemotherapy, radiation and surgeries, and all of the complications that come with it. It's not the life we chose, but we chose to LIVE, every day.
Our first guest blogger is Jackie Savery. Her son Grayson was diagnosed when he was just 2 years old. He just started kindergarten, this year and has an unstoppable spirit. Once you read Jackie's words, you will understand where he gets that from.
I don’t often let myself think of the "what if’s” and the “maybe’s.” I don’t allow myself much time to wonder about what could have been or how it should have been. It’s counterintuitive and well, honestly, I don’t have much in the way of free time to allow myself the luxury of a wondering mind. But tonight…tonight being one of the last of the dog days of summer, I find myself sitting here, the kids all asleep and the house quiet, and I feel a strange sense of sadness and peace all wrapped up into one somewhat lumpy package (that may or may not be wrapped with a lopsided and crooked bow.) A package of emotions and memories and so many feelings that it is about to burst open at the seams. It’s a package that was probably painstakingly wrapped and lovingly dropped off at the post office, only to be thrown into a mail truck that went through a typhoon, two hurricanes, and perhaps a volcanic explosion.
In fact, the more I think about it, the more I am beginning to think that maybe the life of a family, post brain tumor diagnosis, can best be described in such a way. My family used to be a pretty, little box. A neat and tidy ribbon was perched on top and inside, ahhhh, inside you just knew that something amazing was hidden. We had it all. Literally and figuratively. On October 31, 2012, I woke up and my family was still a pretty, blue box firmly held together with a starched white ribbon. I had two gorgeous, healthy children, a loving husband, a great family, and amazing friends. We had just moved into our dream home and we had hoped to try for another baby in November; life was just dreamy. So when Grayson, my 2 year old, started to complain that his bed was spinning and that the house was turning in circles, I will be honest and say that the very naive and innocent part of me thought, “It can’t be anything too bad! Bad things don’t happen to good people.”
I knew though, when an MRI was ordered to determine the cause of his vertigo, that something was wrong. Big wrong. I knew it the moment they sedated my child and told me that it would be only be forty-five minutes. I knew that something was very wrong when, after almost two hours in the waiting room, a doctor sat down across from me and took my hands in hers and said that they had found something inside my two year olds brain and perhaps my husband and I would be more comfortable in a private waiting area. I heard the doctors. I did. I heard and I saw them. I can tell you what they were wearing and what color eyes they had. I heard what they were saying, but I just couldn’t help but feel as if they had the wrong child. I heard them speaking, their voices droning on about the location of the tumor and how it was remarkable that he was still so highly functioning. Yet, despite my very logical personality, all I could think was, “They have the wrong kid, they cannot be talking about my child. Grayson can’t be ‘sick'. He looks like the poster boy of healthfulness.” I think I lived in the LaLa Land of Delusion for exactly four days, until a repeat MRI at The Children’s Hospital of Philadelphia was ordered and scary appointments with neurosurgery and neuro-oncology were made. My delusional bubble burst the second I pushed the number four button on the elevator that was designated for oncology and the doors opened up to a waiting room of mom’s who all looked just like me; shell shocked and tired, but fierce and determined to prove all the doctors, blood results, and MRI reports wrong. My naive and innocent heart deflated a little that day. I remember the sound of my sobs on the hour long drive that evening, as the words, “Grayson’s tumor is inoperable, life-threatening and radiation will most likely not be an option. He will need 15 months of weekly chemotherapy,” ricocheted off the walls of my brain.
Things moved quickly then, in hyper-speed, so that I didn’t even have time to process what exactly had just happened. Ten-hour craniotomies, learning how to shower and do our laundry when we lived in the fishbowl of PICU, surgical complications, hydrocephalus, endless returns to the operating room, crash courses in the anatomy of the brain, waivers in which we signed consent for our child to be poisoned, in an effort for him to live. Making playdates in the PICU playroom, instead of on the playground. My marriage become a tag-team relay in which we divided and conquered; my husband staying home with our other son, while I stayed at the hospital with Grayson, and then swapping out duties, when living under hospital lock-down became too much. We found ourselves navigating the world of medical insurance and tiptoeing our way through the minefield of questions the boys would ask; “What is a tumor?” “Is Grayson going to die?” “Why can’t I go to school?” We became shadows of what we once were. Shadows of who we thought we would be. The pretty little box of “us” was hollow and empty; we were on autopilot. It was the darkest and bleakest moments of my life.
It was also the closest I have ever felt to God, to understanding just how deep and selfless unconditional love is, and to true unadulterated beauty. I am aware of how contrasting the last two sentences are. Yet, I have found, through surviving (thus far) the storm of pediatric cancer, that there is true beauty and grace in the darkest and coldest months and that, the bleaker Grayson’s prognosis became, the tighter the ring of support and love around my family was. The darker the day, the clearer I was able to see. That’s the thing, when you go through the fires of hell, everything except that which is the most vital and imperative, just burns away. There is such beauty in that and in what remains; a torn and tattered box of a family that one would think was beyond repair.
The family we became, post diagnosis, the sad story you read above, make us appear broken and torn to those who look in from the outside, but to me, and to those who see us from the inside out, the scars and battle wounds are what make us even more beautiful, stronger, and resilient. We are a family who lives in the moment, because we are acutely aware of the fleeting nature of tomorrow. I am mother who is fiercer, more educated, and more confident than my slender stature and polite smile may suggest. I have no doubt in my mind the depths I will go for my children, or how deep my love for them is. My husband has already proven, in his mid-thirties, to be a man of faith and soundness, upon which our family supports itself. Our marriage, in all its ragged edges and potholes, has proven to be a soft spot to land and a security blanket in which I, in my moments of weakness, seek to find myself wrapped up in. The superfluous relationships that once, like weeds, littered our lives, were plucked away, so that all that remains are those that are deeply rooted and perennial. There is no room for facades. There is no leeway for anything ingenuous or less than honest. There is freedom in living a life in which there are no pretenses
Grayson’s diagnosis was the worst thing that has ever happened to my family, but in so many ways was the catalyst for the very best things that came to be. The last three years and all the memories that litter it: the PTSD, the tears, the angst, the rage, fury, blame, guilt and anger. The countless hours holding my child during chemotherapy, the vomit, the endless medication administered, the pain of pinning my son down to have his port accessed, the feeling of helplessness as I handed my sedated child to surgeon after surgeon. This never ending cycle of grief, that I find myself so dizzy from riding, is one that I would never wish upon my worst enemy, but if given the choice, I wouldn’t ask for a different life. If God stood before me and presented me with two options, one being a perfectly wrapped box and the other this; this horribly abused, terribly torn apart and water logged gift, I would choose, time after time, this lopsided and broken family.
Clarity is elusive and the gift of clarity is one that comes with a great price. I fear that so many of us live a lifetime before we know what truly matters in this trip around the sun, before we are content with what we see before us. I cannot even tell you how calming it is to know that, when holding my children, I am holding all that matters. All that will ever matter. There is a peace in clutching your husband’s hand and knowing that there is no one in the world that you would rather walk through hell with. I mourn the loss of our innocence. I grieve the family we were. I wish I could have dreamed a different childhood for my children, but this dilapidated, war-torn, shrapnel shredded, mess of a box before me holds a gift more precious and priceless than anything I could ever imagined three years ago, before brain tumors, cancer, and the mess of the world infiltrated our lives.