I don’t recall if it was something I was taught as a child, or a mantra I created on my own, but I’ve always had an inner instinct to practice gratitude daily, as often as possible, with an underlying, “It could be worse” conviction.
Throughout my years as a spiritual seeker, putting things into perspective was something that I learned and loved applying to my life, early on. Our van got a flat tire before a trip or appointment, maybe it was because we could have been hurt in an accident if it weren’t; somebody that I trusted betrayed me and there is a falling out, maybe this is an opportunity to find new, more authentic and reliable people; my attempt at a cookie recipe failed to hold together, it became a granola recipe or cookie bar and I’ve learned something; my daughter is severely underdeveloped and has lost her little bit of language, there was nothing but persistent questions. Why? When? What did I do? What happened? What is life going to be now? Where did she go?
My once solid self, unperturbed by the woes of every day life was suddenly thrown off balance and my nearly perfect life (as I knew and loved it) was taken out from under my feet.
I was afraid and I felt so alone. The child before me seemed a different now. The fact that this diagnosis confirmed what we knew to be off or atypical was not comforting, it was frightening. The worst part was not that anything significantly changed at all for her or for us as a family under our roof, but the judgement and pressure that came from others. I had already had so many questions myself, all of the why, what, when questions had been swirling within me for months but now to try and explain to others about her and to get heaps and heaps of advice, from family members, to professionals, to strangers, stealing me away from my once strong mother’s intuition was debilitating.
Sometimes, I feel that to go back and reminisce on those days and try and truly articulate, to put into words the feelings and thoughts of that time, is simply impossible. No one could understand it unless they have lived it. Grief, shame, guilt, regret, self-criticism, fear, isolation, all unwanted guests of consciousness visit simultaneously and it feels as though they don’t ever intend to leave.
I would like to tell you it gets better. That you find a light at an eventual end and those undesired, uninvited visitors realize their barbaric behavior and leave, but it isn’t exactly true. We simply learn to live with them. We sit with them, we find ourselves listening to them (more often than we’d like to, or even like to admit that we do). We try and learn from them, but even though they may become tolerable, they are never pleasant and it is a life-long battle to win the upper hand over them, reclaim our dignity and keep the home space of our consciousness’ clean.
I will tell you that gratitude is essential in this war within ourselves. The well-worn mantra, “It could always be worse”, still helps in our perspective of reality. It helps, but yet it feels like a melancholy game where we compare ourselves and our lives to others and make ourselves the victor. As compassionately-birthed beings we rise as special needs parents who don’t really care to use the mantra much because we see that everyone struggles. We see the unfairness in making a judgement on another, for we have learned to see more clearly and we see that every one of us is fighting a battle, special needs parent or not. We become more human as we have sacrificed a fundamental part of our being to the pain of letting go of so many things we had wished, hoped, dreamed and had seen for our lives. Our childlike visions of marriage and family life are tainted with our reality and as harsh as that sounds, it is true for so very many of us.
We still live with fear, guilt, shame, self-criticism, embarrassment, grief, regret, isolation, and maybe even denial. We are broken in spirit but we are still standing. We are crippled in soul but we still put one foot in front of the other. We are beyond tired physically, emotionally, mentally and spiritually but we get up and fight, not only our daily battles with and for our child(ren) but also within ourselves.
Amidst everything we have gone through since our daughter was diagnosed five years ago, all of the questions, comments, stares, appointments, opinions, fighting with government officials over what is right for our child and regaining and returning to my intuition as her mother, I still practice gratitude. Ten years later from when I had made it a conscious part of my life and spirituality, my practice has become so much more meaningful.
It is easy to be grateful when things are relatively fine in life. When you make goals for yourself and you meet them. When you can focus on your every day tasks without much exertion or exhaustion. When you can keep finances balanced. When you watch your children meet milestones, make friends and celebrate birthdays and holidays with family and friends.
It is when you find yourself torn from yourself and the life you had planned, separated from your child and alienated from society, friends and family by a label, by behaviors and words, (or lack thereof), that you learn what gratitude really is.
Gratitude is not so much feel good quotes and phrases, it is not affirmations or intentions. It is not found in a self-played comparison game. It is a living and breathing way of being that holds you together in every moment. It is looking into your child’s eyes and knowing and understanding its true definition. Because without it, you just might fall apart.