As I sit here in your hospital room watching you sleep I am overwhelmed with emotions.
Being your mom has left me in a state of wonder most moments and my heart bursting with love every precious minute.
I have to remember to take deep breaths to help the tightness and pain in my chest go away. I close my eyes and inhale for a count of eight and let out a prolonged sigh. I am desperately searching for peace in the decisions I have to make for you. I pray that God, my gut and the thousands of questions that I have asked your doctors and medical experience have guided us into a plan that allows you to live a curiosity filled life. A life full of vigor and desire to explore and discover more natural beauty and less pain. You have endured enough pain in your 10 months on earth than anyone should have to struggle through in their lifetime.
As I write this we are going on day 121 in the pediatric intensive care unit. This hospital room has become our new home.
I am getting used to it, in the same way a prisoner gets comfortable in his cell over time, I suppose. Most days I am on the verge of tears. I used to try to hold them back, now I open the flood gates and let the waterworks flow like an undammed river. I accept the excruciating reality of raising a chronically and critically ill child. I settle for acceptance since it’s the only way to navigate this dark maze. I wish acceptance offered some sort of relief but it doesn’t. Knowing that I have your best interest in mind is the only way I can bring myself to sign your surgical consent forms.
There is no roadmap on making life and death decisions for your sick child; all we can do is our best.
I am faced with two options—another open-heart heart surgery now or take you home with a surgically implanted feeding tube to help you grow and wait a few months for the heart surgery. I talk about these “options” like I actually have a choice in the matter. I can’t help but notice both conditions have the word “failure” in them, but we will continue to fight this battle. I have opted to prolong your next heart surgery, although I know ultimately there is no escaping this untamed beast. Neither you nor I are ready to go through another open-heart surgery right now—our family still needs to recover from the last one, and I don’t mean on a physical level. The choice to wait is anchored in hope. Hope that getting us home will be healthy for our hearts.
Truthfully, there is a chance you may not make it through another heart surgery. This is something I cry about daily. I may be “the adult,” sweet baby, but I am still a kid at heart when it comes to believing that every child should have a chance to play and be free of worry and fear. Although you keep fighting the battle every day, it’s time for you to rest and go home. Even the greatest warriors need a break from the battlefield. Let us take this on for you, sweet Kane. Let us take on the fight and go to war for you, but not quite yet. For now, let’s just go home and be a family for a little while.
The chaplain at the hospital asked me, “What about you mom, what are your dreams in life?” I sat with this question for hours. I realized through this crisis I stopped dreaming or having life goals. Every day has been about survival not dreams; I wouldn’t dare dream because it would break my heart too much.
But as I sit here pondering the question, thoughts and dreams start running through my mind like wild horses. I dream about untethering you from the wires and taking you to the swimming pool, letting you playfully splash and babble at the top of your lungs. I dream about taking you to the beach and dipping your little, soft baby toes in the warm, white sand. I dream about flying a kite with you at the park and watching you stare at its beautiful colors while you feel the wind tickling your face as you run through the grass. I dream about sitting outside on a park bench listening to the birds whistle and sing while watching your reaction to the squirrels sprinting by to pick up the cracker crumbs you drop on the ground. I dream about taking you to your first baseball game and introducing you to the dancing mascot. I even dream about taking you to Whole Foods where you throw the inevitable fit in the middle of the store and me being that embarrassed mom.
Ironically, it’s hard to believe such a simple question we are asked so frequently as children, unraveled so many dreams and desires that I kept locked away in the corner of my mind.
Being a parent is such a privilege no matter how painful it can be sometimes.
I came to the realization that parents of sick kids need a chance to have dreams and experience life’s simple pleasures with their kids like walking barefoot through the tall grass and chasing after butterflies. We are immersed in living our worst nightmares most hours of the day and at least in our dreams we can escape our traumas and taste the sweet freedom and joy that comes with being a family.
Sweet baby Kane, I dream about introducing you to the sky again, letting you watch the shape of the clouds instead of the monitors at the hospital. I dream about the day that you have baby fat and I no longer see your ribs poking out. I dream about celebrating your first birthday party with your entire cheering section of family and friends. I dream about the day that we can relax together and breathe deep and free again. I dream about road schooling you out in the free world without the burden of medical equipment trailing us.
So as I sit here waiting for you to wake up from your nap, I pray that you dream of these things too and we have the chance to turn our dreams into a reality, if only for a brief period of borrowed time.
Author: Lindsay Bartels
Image: Author’s own
Editors: Katarina Tavčar; Catherine Monkman