Beyond Grief: The Power of Lily’s Legacy

This blog is difficult to write.

I have been a Breakfast Club blogger since 2014. I have shared my thoughts about the impact of our work, the future of our field, and the evolution of our leaders. Every time, I give my heart and passion into every word and hope that it will inspire others. This process has come easy for me until one life-changing moment in 2016.

The 2016 BOOST Conference had just wrapped up. Minutes after the conference closing, I found myself surrounded by the BOOST Leadership Team (BLT) at our celebratory debrief. As we were going around and sharing our conference ‘glows’ I received a text from my sister-in-law. My 6-year old niece, Lily, had a tumor the size of her fist on her brain and she had to go immediately into brain surgery. The worse this kid had given us was eczema; this seemed surreal, confusing, and felt like a punch in the gut.

My world stopped. I barely remember what happened next, only muffled sounds and voices from the BLT.

I shared with the group and immediately was showered with love and space to feel as angry and sad as I wanted. Needless to say, from that point on Lily’s journey was uphill. She went through various tumor-removing surgeries that year, on her brain and also her spine. Every time, this little girl bounced back, surprising us as well as the doctors with astonishing recoveries. However, the cancer was aggressive and kept spreading, but it didn’t keep her smile, laughter, and resiliency from shining bright. I remember her playing, jumping, and climbing with my daughter, her best friend, Harper Rose, in the hospital’s playground at Children’s Hospital Los Angeles, just two days before she physically left us on December 4, 2016.

I had never experienced such a loss. I’ve lost dear family members whom I loved very much, but this pain was different. I was angry, surprised, sad, and confused all at the same time. I told myself, “Lily’s death was unfair! She didn’t even have the change to live her legacy!” I spent part of 2017 in a fog, the world didn’t make sense anymore. We experienced a lot of ‘firsts’ without Lily, holidays, birthdays, vacations, first days of school…the list went on and it felt endless.

In May 2017, my son Jude Benito was born. His arrival brought light to our grieving family and community. Yet, we were sad that he would only know of his cousin Lily through pictures, videos, and stories.

It is now mid-2018, and I’m ready to share Lily’s story. Regardless of the nasty scar that I have in my heart from Lily’s passing, it doesn’t compare to the overwhelming inspiration I receive from her on a daily basis. Lily has taught me many lessons in the past two years.

Here are three that I thought were relevant to our work with youth, families, and communities.

1.     Unconditional love can help us see beyond our eyesight. This we do everyday, we love. Aside from the operational and technical aspects of our work, we accomplish so much more. We see our kids for the magical beings that they are despite their circumstances. This allows us to set exceptional expectations for them, because we see their worth and their capacity, their resilience and their grit. When see past the circumstances they have inherited, we see gold!

2.     We can choose to have zero tolerance for BS. When we choose to live a values-based life, our voices get louder and clearer. Often times, we stay quiet and don’t ‘rock the boat’. Our youth and children cannot afford that we stay quiet about the injustices that plague our communities and their education. It is our responsibility to think differently, innovate our programs, design a culture of care, today, because we may not be here tomorrow. Anything that impedes you from doing the above is BS and we have no time for it. We have REAL work to do!

3.     Everyone has a legacy. Upon Lily’s passing, I was angered with the belief that she didn’t get to live her legacy. Yet, she has and continues to teach me great lessons daily. She lives on. The children and youth we serve have a legacy now, and it is our job to help them live it out each day for as long as we can. Each day they realize the power of their legacy is a day that the world has changed for the better.

Thank you Breakfast Club for allowing me to be vulnerable and share Lily’s story and keep her legacy alive. Aside from the continuous love of my tribe, which includes the amazing 2016 and 2017 BLTs, I continue to reach out to The New Hope Grief Community for support, education, and resources for my journey with loss and grief. They also provide parent workshops and school-based grief support.

If you want to learn more about Lily and donate to pediatric brain cancer research click here: Support Lily Love – Help Fight Pediatric Brain Cancer

Much love.

For breakfast, I had whole milk plain yogurt and an organic honey crisp apple. 

Author: @csecada