Susie's Story
A Place Where Grief No Longer Speaks Louder than Love
For much of my life, I carried two heartbreaks, the first was my own; the second was my mother's.
I do not remember the day I was born, but I grew up knowing the story of it. My mother once described my birth as the saddest day of her life. She spoke of fear, shock, uncertainty, and the overwhelming grief that came with learning that her daughter would face challenges neither of us could yet understand.
As a child, I heard those words differently than they were intended. I did not hear a mother's grief for the suffering her child might endure. I heard that I was the cause of her sadness and so, before I was old enough to understand medicine or disability, I began carrying guilt.
My mother was my safe place, my protector, my advocate, the person who sat beside hospital beds and fought battles I was too young to comprehend. Yet because I loved her so deeply, I absorbed her pain as if it belonged to me.
While she grieved for the daughter she feared might suffer, I grieved for the mother I believed deserved better. Neither of us knew how much pain the other was carrying.
I became the child who coped, the child who managed. At school, I felt different in ways that were impossible to hide. I often felt as though I existed just outside the world everyone else belonged to.
At times, life felt so overwhelming that I struggled to imagine a future at all.
There were moments when I believed planning a funeral was more realistic than dreaming of a future.
Yet even in those darkest moments, my mother never stopped loving me and I never stopped loving her. She looked at me and wished she could take away my suffering. I looked at her and wished I could take away hers. For years we stood on opposite sides of the same pain, each believing we had somehow failed the other.
Time has a way of teaching truths that trauma hides. Slowly, diagnoses arrived, not all at once, not neatly but in pieces. What had once been unexplained began to make sense, conditions that seemed unrelated revealed connections. Eventually, the discovery of TRIO syndrome provided answers that VACTERL alone never could.
For the first time, many of the mysteries of my life had explanations and with explanation came something unexpected; compassion.
I began to understand that my Mum had not been grieving because I was a disappointment. She had been grieving because she loved me.
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She had looked at her tiny daughter and wished she could spare her every hardship. Her sadness had never been about who I was. It had been about what she feared I might endure.
At the same time, I began offering myself the kindness, I stopped asking what was wrong with me, I stopped seeing myself as defective.
When I look back, I no longer see a mother whose life was ruined by my birth.
I see a mother who loved her daughter enough to carry unimaginable fear, when my mother looks at me, I hope she no longer sees the fragile child she worried she might lose.
I hope she sees the woman who survived, the woman who built a life, the woman who learned to love herself. Most importantly, I hope she knows that none of this was ever her fault.
Today, there is acceptance. We were simply two people trying to navigate something neither of us had chosen. Together we arrived somewhere neither of us could have imagined all those years ago.
A place of peace, a place where we can look at one another and see not tragedy, but resilience.
In the end the story was always about love, a love that survived fear, a love that survived guilt, a love that survived uncertainty.