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LESSONS LEARNED FROM THE SIDELINES

This time 6 years ago is a bit blurry for me. I know David’s parents and family likely remember every date and every decision. I don’t. I remember my experience, the only way I can, through my perspective. I knew in some ways the magnitude of what was happening but I didn’t realize it would be life altering for so many including me. For those who don’t know, at this time 6 years ago, David Pearson was in hospice after 20 months battling GBM. It was the first time, as an organization, we had been faced with this and for me, as an individual, it was my first glimpse into loss of this magnitude.

David was what one would call an old soul. He had a level of compassion not typically seen in people and an ability to ease other’s worries and discomfort. He found the words to make people feel special and let them know they mattered. He was just plain old good. I didn’t know him well though, but what I did know, I have carried with me for these years to inspire and remind me of the importance of the work we do at FGP.

Without realizing it, I was learning things every day from David and his illness as I watched from the sidelines as the family’s “Lead Volunteer’. So many of the things I was learning, I knew nothing of prior to those days in 2012. So many of the things, emotions and experiences were firsts that would help in the shaping of FGP and me. I was thrust into situations with no knowledge or training  just human experience that led me to behave, learn and act in certain ways. I am sure I did things wrong or said the wrong thing more than once but each step I took was one more toward understanding what comes with child loss.

As you might imagine, these experiences changed me and I find each time we learn an FGP child is going to die, I use the tools I gathered in those days to help these families. I also have found I  follow a pattern of how I process this news and that it  always includes anger, sadness, more anger, a call to my co-founder and friend, Stephanie and then action followed by time to reflect and work on self care and processing grief. As I reflect on this day, the eve of the “crapiversary” of David’s death, as a friend refers to anniversaries of loss, I am surprised by how much I learned in those early days of FGP . Today I am sharing them here in hopes of informing or moving someone, but also paying tribute to David and acknowledging that many of us are better for knowing him:

1. A person facing a terminal diagnosis will leave you with lessons to be used forever.
2. Not only does a child have to meet very specific criteria to be eligible for a clinical trial but children get removed from pediatric cancer trials if their body doesn’t respond in the way that is expected.
3. Pediatric cancer treatment isn’t cut and dry. Often parents are searching for something to do because no one really knows what treatment, if any, will work. And often, they don’t work.
4. Showing up and being present is more important in difficult moments than anything else.
5. Often sitting quietly beside someone who is hurting is one of the most valuable things we can do. It is our words that get us in trouble not our presence.
6. We all think we know how people “should” do things but we all go through our day to day using our experiences, knowledge and heart doing the best we can with the situation we are handed. None of us does it right, we just do it right for us.
7. A child’s funeral is raw and brutal and hard.
8. Putting your own emotions aside and doing things outside your comfort zone (like children’s funerals) can make a difference for a grieving family.
9. Photographs are a valuable gift for the bereaved. Share them, buy them, enlarge them!
10. Grief is different for everyone.
11. In situations where a community feels out of control because of a loss, providing ways for people to participate and help, creates and outlet to work on healing.
12. The grief that comes from the death of a child is different than any other grief.
13. We can grieve a death of someone we don’t know well.
14. People will show up in unexpected ways when you need them most.
15. We will never have an exact understanding of what any other person is experiencing.
16. People will choose the resources and supports they most need not the ones you might suggest.
17. Holding space for someone who is facing this sort of loss is a powerful human experience but so is knowing others are holding space for you.
18. And lastly, we cannot change the diagnosis, we cannot change the outcome but we can ease the pain in their hearts and stay with them.

David continues to be remembered and missed. I will forever be thankful for my few brief encounters with this amazing young man that started me down a path filled with rewards. Tomorrow, May 11, 2018 marks 6 years since David left this earth, but the love felt for him remains. If you knew him, share a story, reach out to his parents or Austin or other family or friends and let them know you still think of David, or share a photo that they have never seen or may want to see again, or simply say his name.  He mattered.

Please note, that I know the depth of my experience will never be what it was for his family, but I hope my perspective may help someone else and believe it worthy of sharing.