A Rainbow in the Clouds

Frankie Willow Fitzgerald: A rainbow in the clouds

It has taken five months to summon the courage to share this news publicly. 

On October 16th, 2022 our daughter Frankie Willow Fitzgerald, passed away in our home. Frankie shone brightly for her short time with us in human form and we do not doubt that she will continue sparkling for many lifetimes. Frankie lived whole-heartedly up until her final breath and now continues on her journey as a vibrant, wild, and free spirit. She was nine years old. 

Frankie’s time in this life was cut short due to Diffuse Intrinsic Pontine Glioma (DIPG), an aggressive and incurable brain tumour. You can read more about DIPG, its side effects and devastating consequences here.

Frankie lived with DIPG for over eight years. The initial diagnosis turned our life upside down. We were told she would not live more than twelve months. Rather than pursue conventional treatment, which is ineffective and comes with adverse side-effects, Frankie guided us to live fully in each moment. She gave us the gift of a present and wonder-filled life. Free and unshackled from external expectations. 

Every single day for the last eight years, we never lost sight of the fact that at any moment the tumour could change for the worse. As a family we tried our best to live fully every day, knowing that the trajectory of Frankie’s life could be altered at any point. It eventually did. 

In September 2022, following a rapid deterioration in Frankie’s physical condition and with no hope of a cure, we chose to care for her in our home, Frankie’s sanctuary by the sea. We did our best to fill every moment with as much joy as possible while assuming the immense responsibility of caring for our dying daughter. We are beyond grateful for the support network which enabled this to happen. Frankie lived her final two weeks looking over the ocean and taking daily walks to her Magic Beach and Magic Tree. In her final days, she was able to feel the cool ocean on her body which brought her great joy. 

Leanne and I held Frankie with all our love and strength during her agonizing final breaths. It was the most gut-wrenching, heart-aching experience of our lives. Traumatic for all, but with a sense of peace. Frankie was a warrior to the end. 

The days don’t (yet) get any easier. We don’t wish them to or expect them to. We have lost one of our core reasons for being. Since Frankie left us, Leanne, Beau and I have felt every feeling imaginable - emptiness, numbness and deep sadness that we have lost our shining light. We feel unbounded love, gratitude, and wonder to have been graced with Frankie’s presence for ten wondrous years. We feel peace that Frankie has been set free of her physical and emotional suffering while mourning the extraordinary life ahead of her. 

To be in Frankie’s presence was a tremendous gift. Her smile beamed. Her eyes twinkled. She was radiant, energetic, overflowing with love for all beings, wholly and equally. She cared and protected all. She healed, nurtured, nourished. She inspired.

We will forever yearn for Frankie’s hugs, kisses and holding her hand. We will hold her in our hearts for the rest of our days. Frankie made us all better by being in her presence. As her parents we are privileged to be her students. She taught us to be alive, not afraid. She taught us to postpone nothing and to express ourselves fully in each moment. She guided us to take notice of everything - immense and tiny. 

Every morning we will wake with the expectation that she will cartwheel out of her room ready to embrace the day ahead as she always did. 

We’ve come to experientially appreciate the core truth that life is an unfolding paradox. The unity of opposites. To love a child is one of life’s most profound gifts, and to lose a child is one of life’s most profound tragedies. Our hearts are full to have shared such an amazing life with Frankie, while our hearts are broken that we don’t get to continue to walk by her side. Without love there is no loss. Without the dark, there is no light. It is all life.

We hope to absorb just a tiny fraction of Frankie’s warrior spirit. Her fearlessness. Her passionate, loving, free and wild presence. 

To be Frankie’s parents is the greatest gift. She taught us more than we will ever know and will continue to do so for the rest of our lives. She will forever be a part of us.

We are committed to living each day as she showed us how while making meaning of the infinite gifts she bestowed on us. 

Frankie showed us how to be the best we can be. 

With love and wonder,

Dan, Leanne, Frankie and Beau