Seeing the expansiveness of the clear, blue skies pierced with rays of sunshine, while the cool, crisp air brushes my cheeks, I breathe in deeply the scents of musty earthiness and smoky wood burning. As I slowly walk the streets of my neighborhood, the autumnal sights, smells and sensations bring refreshment to my body. There is such a stark stillness of stunning beauty and revitalization that bursts forth after long periods of rain. This day beckons me to see how clear, bright, and expansive life can be.
Webster defines expansive as: having a capacity or a tendency to expand, characterized by richness, abundance, or magnificence.
“Expansiveness” was not the word I would have used to describe my everyday life. It was marked by so much loss that only felt restricted, confined, measured, and finite—the language of death, not life.
Yet there was expansive life all around continuing to beckon me to life—to live—not letting death have the final say, but to burst forth from the pain of great loss into a life that is free from the constraints of our society and the systems that continually ask us to play by the rules, stay in the lines and boxes that are meant to tame, diminish, and slowly kill us.
Would I let death and loss continue to keep me dry, hiding, silent, and barely alive?
Or would I allow this death to be the catalyst that births expansiveness in the wholeness of my being? The life I imagined I would have was melted away by the painful fires of the reality of my actual life. And yet these painful, hard realities do not mean there will be no life. They do not define me. They do not get the final say. They are only a part. Despite the hard, suffering loss I live with every day there will still be LIFE. There will still be goodness; hope that out of the death there will be a different kind of life, the one my heart has most longed for. I can taste, smell, hear, see, and touch it each day.
My second son was born with a rare genetic disorder (though I feel he actually may be more “ordered” than most of the world) which causes him to stay trapped in the toddler stage of life even as his body continues to grow. He lives with extremes. Coming with the season of toddlerhood are tantrums—little bodies feeling big and scary emotions in need of a grown-up body to help them regulate and know they are not alone and are loved. When my son is upset and dysregulated, his tantrums are violent towards his body and those around him. He thrashes, hits, spits, bites, screams, and throws his way toward safety, regulation, connection, and calm. These emotionally and physically taxing episodes have been happening every day for the past seven years. They have worn me down. The extreme behaviors of my son have ushered death, disruption, and so much loss into my life. There has been a foggy, thick cloud of despair and hopelessness that has settled over our home, in my life and body. And I have not known how to see past the gloom to the life right in front of me.
I have drowned in the feelings of powerlessness and frustration at the utter helplessness I feel as a mother and over my life. This is true. And yet, what also is just as true is the life that my son brings. His pure, fully embodied, expressively animated excitement over the simplicities of life—blaring music as loud as possible and dancing, walking up to anyone with a dog and asking to pet it, introducing himself to random strangers, going to the grocery store with the enthusiasm of a trip to Disneyland, his fierce hugs—he lives ever-present to the present. He embodies a life lived in the reality of this broken and beautiful world, fully experiencing the range of emotions and dependent on others for help, care, and love, so that he may keep living.
His life that blazes past social “norms” can be intimidating and anxiety-producing for me, his mother, a trauma survivor who has coped through life by being small, hiding, and shutting down, silent and barely alive. He beckons me to live life fully alive—to speak, to be loud, foolish, and free.
I have allowed the hard of this life to define my life as death and lacking goodness. This fog settled for way too long, clouding the life right in front of me. This life with my son is hard. Yes. But hardness does not have to equal death. He has been inviting me to a different kind of life—a wild life—defined by the goodness and glory we bear, which is for all.
Expansive is this life.
Amy Rupple has been on a journey to uncover, connect with, and freely express her most authentic self, buried over many years of heartache. She longs to find meaning, depth, and beauty in the mundane and in the unexpected losses of everyday life in Portland, Oregon. Married to her long-time crush for 15 years, Amy is mama to four wild, lively, tender, disruptive boys. She loves dreaming, imagining, designing, and creating deliciously beautiful food to share with others.
Excellently put Amy!
I don’t doubt having a child with this syndrome is not difficult and has challenged you every day, but If you ever experienced actual death of a loved one I do not think you would call this “death” that the son you were given by God was not what you were expecting. Actual death in real life is something totally different. That is the only part of your story I find hard to relate to. “Expectations” may be a better word. What you imagined & dreamed of, what you “expected” is not your reality, but it is not actual “death”. You have a living, breathing child and three others that are all alive! Rejoice & enjoy them all bc they are alive & gifts from God!! Please, please do not call this “death”!
❤️
Beautifully written! Letting go of my own expectations, hopes and dreams for our kids is a daily battle. Thank you for putting words to that fight, and for fighting to find the beauty in the war.
Thank you for your sharing your profound and sacred story with us Amy. You so beautifully expressed not only the depth of pain and loss but also the incredible beauty and aliveness that you are finding in the midst of it. Your words are deeply inspiring and I’m grateful for your bravery in sharing them. Please keep writing and sharing even when critics try to ‘edit’ you. This world desperately needs your voice and wisdom.
Thank you for being vulnerable and sharing your story Amy. I’m a special Ed teacher and I see the challenges and beauty that these children carry. They challenge us to see life a bit differently, and it’s a beautiful thing. 💕