It is only possible to live happily ever after on a day -to -day basis.
When our firstborn daughter, 3-month- old Nora, was diagnosed with a rare seizure disorder, developmental delays and other complex medical concerns, her future and our family’s future, felt uncertain and bleak. The bracelet I wore on my wrist, as I held Nora’s hand in the PICU, had the words “and she lived happily ever after” inscribed on the inside. It was a recent birthday gift from my Grandmother. As we listened to many doctors talk over Nora’s PICU bedside, we were overwhelmed by the many unknown possibilities for her future. Over the weeks following Nora’s diagnosis, medical voices kept talking and were joined by the voices of early intervention specialists, therapists and educators. As the voices kept talking, the words “and she lived happily ever after” became our comfort, our hope that somehow, life and happiness can and will exist for Nora, for our family. As whimsical and hopeful as these words sound, they became our battle cry during failed treatments, devastating diagnoses and as we wrestled with our own brokenness.
I started this blog in the early days of Nora’s seizure diagnosis as a way to share our journey with others, to ask for prayer and positive vibes when treatments were failing, to celebrate seasons of health and to teach, share, and process pieces of our lives in a way that allowed our family and friends to walk along with us, to understand and to learn about our lives without ever having to open the floodgates that held our broken pieces. As we shared our story, we connected with many wonderful people who felt drawn to walk with us on this journey. We began to hear stories from people we didn’t even know about their own unexpected challenges– their seasons of brokenness and endurance.
This inspired me to keep writing and sharing, to join the conversation around the possibilities life has to offer even as we encounter life’s unexpected challenges. We believe that even in the fog of unknowns, and heartbreak, there is the possibility of days well lived, and the possibility of our own happily ever after right here. Right now.
Today, Nora lives with a slew of health challenges: daily or twice daily seizures, multiple medications and their side effects, fragile lungs, and an immune system that leaves her more vulnerable to what would otherwise be mild illnesses. Most of these health issues classify Nora under a rare disease called Aicardi syndrome. Nora lives with Aicardi syndrome, but she never lets us forget the “lives” part of that description. She loves her family (this includes her little brother Everett and her Labrador Tahoe), her beautiful village, preschool, music and books. Nora also loves to dance (especially with her friend Grace. to see and learn more about Nora and dance check out “Grace and Nora’s World” or “The Decision to Dance”). Nora lives. And despite the challenges she encounters on a day to day basis- we see her fight to live well and to embrace each day and its possibilities.
The reality of Nora’s diagnosis means we don’t know what tomorrow holds, or how many tomorrows we have, but we see today as an opportunity to be intentional, to focus on celebration, connection, warmth, kindness, laughter, gratitude, love– anything and everything that makes us glad we are alive– that makes our hearts sing, turn toward heaven and say thank you. We love to celebrate; we love to have fun. But, we also choose to be realistic about the challenges Nora faces and the challenges we are encountering as a family along this journey. We choose to acknowledge and share about our family’s seasons of endurance, our difficulty accepting what tomorrow might hold and our struggles as parents of a medically complex 3-year- old and a typically developing, bright -eyed, 1 year old little boy.
We hope you will come along, to enjoy our day to day, the real talks, hard moments and and the joyful ones. We hope you will join the conversation, consider new possibilities and find inspiration in your own story. It is our hope and prayer that you might find here the courage to see and share pieces of your own happily ever after. It is a beautiful life, God is good, we have so much to be thankful for. I’m glad you joined us today for our messy, bright, day- to -day happily ever after.