By Natalie Roberts-Mazzeo
This one is for all the mothers out there raising a beautiful child with a diagnosis, disability or additional need. Whose motherhood journey changed in monumental ways, the moment you received your beautiful child’s diagnosis.
At the end of the day, we can endure much more than we think we can. – Frida Kahlo
Since my daughter’s life-changing diagnosis, we have been on a quest for healing and miracles. Our family life has shifted in ways we could never have imagined. We have discovered new depths of understanding, a greater appreciation of life and the grace of grief.
Our dreams of parenthood didn’t quite go to plan. After my daughter suffered a stroke, I was struck with the same gut-wrenching question on high ration through my mind: Why? Why her? Why me? Why us?
As I walked out of the hospital, tears flowing down my cheeks, I looked up to the sky completely overwhelmed with fear and worry. I was terrified of what this may mean for her quality of life, future and everything in between.
Yet through all the worry, there was a tiny flicker of hope, enough to stop me in my tracks and pause, literally, as I noticed a huge rainbow shining brilliantly against the dark grey sky. In that exact moment I made a sacred contract with the universe. I vowed never to give up.
I hugged Chiara’s little 5-month-old body even closer to mine, and we turned our back to the hospital and our faces to the light of the rainbow ahead.
Fast forward to today, five years on, we have adjusted and assimilated to our new normal. This little girl has cracked my heart wide open and I am living in dimensions I never thought possible.
I’m more connected to my purpose, to others and what a blessing it is.
I have been seeking so many answers since my daughter was diagnosed, you know the kind – the big WHY.
One night, we were sitting around the open fire. I felt so deeply comforted and captivated by it: the warmth, the golden glow, the smell and the sounds. Open fires bring a faint sense that connects us all to our tribal ancestors, who also gathered around open-fire’s sharing stories, poetry, music and dance, since the time immemorial.
What is our story?
What would we share around the open fire, underneath the star-filled skies?
It would encapsulate stories around adventure, grace, hope, compassion, grief, love, fear and bravery. A melting pot of so many emotions and experiences.
Our daughter is five years old and as the gap between her milestones widens, the space between her expected-life span shortens. As time unfolds we are faced with the continued loss of her abilities and milestones which bring with it a great deal of grief.
It’s fair to say that parents of special needs children experience moments of grief, but it’s only part of the story, and nowhere close to the wonder and miracles that unfold along the journey. However, one thing is for sure, when the grief hits, it can take you out at the knees.
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