Each day I lay on a small mat, on a hard floor, and I listen quietly to my breath. For the past two months, I have taken time away from the chatter, the blogging, the chaos of social media, and the turmoil and trauma of raising a child that is both medically fragile and developmentally delayed. A puff of scented mist fills the air, and a warm and cheerful scent of citrus fills the room. Slowly I listen to my breath as my stomach and chest rise and fall. I sink deeper into a quiet place where my brain is quiet. Not a peep in my brain. The hamster that is frequently churning in my mind is quiet, and I am silent with only myself. I close my eyes, and I only hear the soft breaths of others in the room with me. Each person is in their place, their world, and with their breath. For 60 minutes a day, I find a place where there is no one but me and my breath. My soul, my spirit, and my heart become unified in the breath. Outside chatter and noise cease to exist, and I remind myself that self-healing comes in many forms.
Four years of my life have been spent on the front lines of parenting a medically fragile child. The child I raise doesn’t have the same life as a typical child. Each day we are playing Russian Roulette with several illnesses, and we hope and pray the treatment we have works. There have been moments when I have been punched in the face with phrases like No cure, Life-threatening, Life-limiting, prognosis unknown, no known umbrella diagnosis, open heart surgery, potential neurosurgery, feeding disorder, apraxia of speech, global dyspraxia, and g-tube placement. Many of the days were spent in a blur. Not once was I ever-present in what we endured. My nights were restless, and I would barely close my eyes before it took to wake. Days were spent in therapy, at the doctor, calling insurance, working with social workers, nurses, and hoping he isn’t forgotten about in his IEP at school.
Four years of his life, I have been a mother that has been on edge. My temper has been short. My jealousy and envy for normal parents and normal children fueled my rage. Looking into the future was impossible because I didn’t know how long he would be here. There was no crystal ball given to me on how to raise a child that was so complex. Doctors often would gaze at me with puzzled eyes, and I would get sad and sympathetic looks from friends and families. I was tired of feeling like I was constantly on someone’s radar for “what else is going wrong in V’s life today.” Several years in and the diagnosis have not stopped coming. In fact, we have added diagnosis, doctors, and therapists along the way. There are so many comments that are well intended but poorly received. I don’t mean to take it personally, but I do. My life has never been about being average. Before motherhood, I was an overachiever, and after I had my child, I felt like a failure.
Nothing I can do can fix any of what I am facing. As a mother that is my job to “fix” or make things better. I can’t make any of this better. Instead, I dove into a world of “Palliative” care. A term coined for adults in nursing homes or people battling cancer. It was not a word I wanted associated with my son. At the ripe age of 4 years old, we were told, “He won’t ever get better. We need to move to accepting where he is at and improving his quality of life.” A wheelchair was ordered, disability placards were given, therapists were recommended to help with behavior, and we were continuing to drown more and more into an abyss of his disease.
It as clear then, there was no longer an option of being stuck in anger, resentment, frustration, and grief. I could not wade in the tides and waves of pain, and I took a step to heal my mind, spirit, and heart. My first day on the mat felt awkward and weird. Listening to other people breathe, slipping on my mat, and falling in and out of poses made me feel self-conscious. In the end, as I laid in my final resting pose, my head was quiet. For the first time in an extended period, I heard only my breath. When I got home that night, I laid my head on my pillow and drifted off to one of the most solid nights of sleep I had in years.
My husband noticed a change in me immediately. He said I was relaxed, easier going, and less stressed by everyday nuances. I was getting in fewer arguments with people I loved, and I was finding myself less angry at people that had normal children. Acceptance started to grow in my heart, and I watched my spirit blossom into the mother I was supposed to be. When dark or anxiety ridden thoughts entered my mind, I could control them by focusing on my breath. I could pause my day and breathe to remind myself that I could be in control not of my surroundings but my thoughts. Instead of focusing on what I could not control about my son and his diagnosis, I could control my reactions, my words and how I allowed my anxiety to fuel my days. Sixty minutes a day was all it took to take me a place from utter darkness to having a soul that is light and happy. I see the possibility in every single day now. No longer do I wake up hindered by exhaustion or filled with grief. I know that for sixty minutes each day I will heal, become connected to my spirit, and I will learn to live in the present. In truth, the present is all we truly have.