Sunday, September 17, 2023Tonight's picture was taken in September of 2008. That week we visited New York City, to take Mattie to a renowned cancer center to be evaluated. That particular evening our former neighbors in Washington, DC invited us and my lifetime friend Karen (pictured here) over to their home for dinner. They were a NYC support team. Today is Karen's birthday, so it seems fitting to post this photo of the three of us. At that moment in time, we had hope that perhaps we could attack Mattie's cancer and give him a chance at life.
Quote of the day: Grief can't be shared. Everyone carries it alone; his own burden in his own way. ~ Anne Morrow Lindbergh
On September 29, I have been asked to speak at a webinar on Legacy Making. The webinar is being hosted by the International Psycho-oncology Society. I am going to be discussing my own personal views on the topic and how it relates to us building Mattie's legacy! So what does legacy actually mean? Well the Oxford Dictionary says that legacy is "the long-lasting impact of particular events, actions, etc. that took place in the past, or of a person’s life."
For the past two to three weeks, I have been giving this topic of legacy making A LOT of thought. This is a buzz word that rubs me the wrong way. Specifically because of my history with it. When Mattie was dying, we did not work with anyone on the clinical team to capture Mattie's thoughts, reflections, or how he wanted to be remembered. He was 7, I don't think Mattie would have put up with such clinical exercises, and furthermore, I am NOT sure we were mentally prepared for Mattie's death. Having a discussion about legacy making would have set me off.
Moving forward. After Mattie died, Peter and I were invited to a palliative care conference to talk about bereavement and our journey with Mattie. Before our panel presentation there was a session on legacy making. The social workers discussed the topic and the clinical resources they use to help families capture a child's legacy (while the child is facing a terminal diagnosis, and in end of life care). The social workers showed examples of remembrance books created by the child, a listing of activities of how the child wished to be remembered, a listing of what friend should get what toy, etc! As Peter and I were listening to this, all that was going through our minds was.... WE DIDN'T DO THIS! WE DON'T HAVE ANY OF THIS and WE FAILED! Literally we were dejected and troubled and frankly now over a decade later, I can still recall that moment in time like it were yesterday.
The problem with all of this was the rigid interpretation of legacy! To this group of clinicians, legacy meant something that is captured from the person who is dying which is then passed down to those left behind. It is a very purposeful and intentional task. I can see this working for a teen, young adult, or adult, but how does such a process work with a young child? I think it doesn't! In fact, I would say that legacy making must be done by the ones LEFT BEHIND, those of us still living and trying to make sense out of a traumatic loss!
On of my presentation slides for the webinar is this one! Notice I show two images. One is a person handing over a legacy to most likely a person left behind. The other image has been my interpretation of legacy.... which is creating a life story together.
When I shared this slide with the leader of the webinar, she encouraged me to replace the "or" in this or that with an "and."
I absolutely understood her perspective, but for me, who lost a seven year old child, it wasn't "this and that," it will always be "this or that." I feel strongly about this because I did not have someone on Mattie's healthcare team working with us to capture Mattie's feelings and thoughts before he died. Again in all fairness to them, I think they were traumatized too with the rapid pace Mattie was dying. We went from fighting the illness one minute, to end of life care the next. Now 14 years later, I no longer blame anyone other than the situation. But without having Mattie's thoughts, words, and feelings, we had to come up with how to memorialize Mattie on our own.
Mattie did a lot of creating in his lifetime and I do think Mattie’s artwork is legacy work! But it most definitely wasn’t created to be of such. Which is why I challenge people to think about legacy making as a journey we are on together, building a life story when the child is alive. Rather than purposefully setting out to create or reflect on things that will mean something to us when our child is dead! That is contrived, especially with a young child who is dying.
From my perspective we didn’t go into any activity with the mindset that we were building legacy! We were building our life story together and helping Mattie deal and cope with a horrible diagnosis and treatment! At the end of the day, it was Peter and me who looked back at all our times together and realized Mattie didn’t need to record his wishes or even say them to us. We didn’t fail. Instead our road map is found within his art pieces, his Lego structures we built together, and sharing our lives as a family. Those memories serve as the foundation of his legacy.
In a way legacy making and end of life care are one in the same to many people. But are they? I think a similar analogy is with palliative care, which gets lumped into end of life care. The only people who truly appreciate the differences between these two fields are those educated in them and those truly practicing the specialty of palliative care. In some ways I feel like clinicians want to check the box and say "yes" I helped the family with legacy making, but in all reality, legacy making may look different for each child and each family. So being prescriptive with tasks and activities around this may not be helpful!
There needs to be a mindset CHANGE! As families work with children, they are capturing their daily thoughts and feelings, but NOT as something tangible for end of life and a legacy. Certainly, it could be appreciated that way if the child does die, but given that none of us holds a crystal ball, we can't determine who is going to survive and who will not. Therefore, capturing stories, living one's life to the fullest, is the best way possible to build legacy. In looking at how Mattie led his life, we then uncovered his legacy. To me legacy making (for at least a dying child) is about the LIVING and isn't necessarily beneficial for the dying child. Mattie's legacy I believe wouldn't mean that much to him, from his 7-year-old perspective, but as his mom, it means a WHOLE LOT to me.
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