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"Resilience is found when you overcome the ego and let go, surrendering to a greater plan."

By Alison Fiorini

My life was great. I came from a loving home; my parents were Italian immigrants who worked hard and set a strong foundation for my sisters and me to live by. It is fair to say I grew up safe, content, and well travelled and also fair to say that I had a rather uneventful life—I was never a rule breaker. I went to school and obtained a university degree. I dated and married the only love of my life, who lived in the neighbourhood and shared the same goals and aspirations. Luciano Fiorini and I started our fairy-tale life together in July 2002; he was a good father who put his family first always. Lucas came into the world in January 2004, his sister, Jordana, in October 2005, and their tenacious little brother, Laurence, in 2008. All was good in the world, and we were blessed with great children who all thrived in school, excelled at sports, and were the joys of both sets of grandparents. We were financially comfortable, and our troubles, whatever they may have been, would not even be considered a worry today.

I was glad the first man to take her to Paris was her father because the first visit to the City of Love should be gifted by a man who would never break her heart. 

We took the children on their first European adventure in July 2015. We went to Capri and Rome and Paris. Paris was not originally on the itinerary, but our daughter, Jordana, longed to see the Eiffel Tower, and my husband wanted to make that wish come true. I told her I was glad the first man to take her to Paris was her father because the first visit to the City of Love should be gifted by a man who would never break her heart. Her only cherished souvenir from the entire trip was that seven-euro ticket stub to the Eiffel Tower.

I had never heard of DIPG before, and while the earth was being ripped from below me I struggled to remain positive.

Shortly after we returned, half of Jordana's face became paralysed. We went to the Hospital for Sick Children (SickKids) in Toronto on three separate visits and came back with the same diagnosis of Bell’s palsy. It didn't sit well with me. Her first week of school, my vivacious daughter became clingy and nervous; her speech was slurred, and when we looked at each other, our eyes both expressed an unknown fear. I took her back to the hospital on a Saturday morning after she had vomited. I told the boys, “See you later,” but the emergency visit turned into a full day and night, and an MRI concluded that Jordana had an inoperable tumour in her brain stem known as diffuse intrinsic pontine glioma (DIPG). I had never heard of DIPG before, and while the earth was being ripped from below me I struggled to remain positive. I refused to google what the doctor’s eyes already told me.

Jordana went in for a biopsy, and she was one of the less than 2 percent of patients who hemorrhage during this routine operation. She went straight into ICU for weeks to follow. We were a perfectly happy family one day and living the worst human nightmare the next. They were an impossible four months, but Jordana eventually woke up in the ICU, much to her medical team’s surprise. I think it was a gift from God to have that quality time with her. She was unable to eat for the rest of her life, but she fought during physiotherapy to regain her physical strength. She gave us all the courage that would sustain us then and sustains us now. I wanted to jump from the eighth-floor window, but how could I give up when my daughter gave me every reason to go on? I saw God's will and determination when I would stare at her while she slept. I stayed with her in hospital many sleepless nights, seeking answers nobody could give me.

In the capsuled time you are here you must live understanding the privilege it is to be alive and not take the gift for granted. 

Jordana gained her wings on January 22, 2016. Even in death, we have never said good-bye to her, for in the broken happy-ever-afters is where you find God. Whatever your faith is, I hope you have some. The smallest seed of faith can carry you. It is only through faith that there is something bigger, something greater that lets you fully understand the true power of human life. Everyone must live and die their own true story. In the capsuled time you are here you must live understanding the privilege it is to be alive and not take the gift for granted. You must develop ways to harness that God-given strength. Your ego is there to protect you, but it is not what makes you resilient; in fact, it can counteract your strength if you allow it to lead you. Resilience is found when you overcome the ego and let go, surrendering to a greater plan. Resilience and strength come from change and overcoming what you haven’t already faced.

To help us to build on and maintain our resilience, we developed a movement called Jordana's Rainbows. Jordana loved rainbows since she was able to draw and talk; if you knew Jordana you knew her love for rainbows. We wanted the people who would come to know her, in her eternal life, to always identify with her through this symbol. Jordana's Rainbows has connected me to other parents with children who currently suffer from or who have gained their wings from DIPG. They seek comfort from Jordana's story and our family’s ability to find faith and strength. These families have in turn helped us to be strong too.

Our sons continue to help us raise awareness, and our angel number twenty-two—from the day Jordana gained her wings—has become a special sign of guidance and support for us. Rainbows have special meaning too. It is no coincidence that when Laurence celebrated his First Holy Communion only months after Jordana passed in May 2016, he had to read about Noah's ark. God gave Noah a rainbow as a promise for eternal life. We hold this scripture close to our hearts, and in times where we lose sight of our mortality we refer to this passage and know that Jordana was a gift from God helping us to help others. Jordana is our eternal rainbow.

Grief & Loss Building resilience Children Collective resilience Finding meaning Loss of child Cancer DIPG
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