Friday, February 23, 2024

Friday, February 23, 2024

Tonight's picture was taken in February of 2008. Only five months before Mattie was diagnosed with cancer. That weekend, we took Mattie to Roosevelt Island. Which was practically a weekend tradition, regardless of the weather. I tried to save some bread throughout the week, so that Mattie could feed the ducks. He loved watching them and truly was my nature lover.

Quote of the day: Nobody can fully understand the meaning of love unless he’s owned a dog. A dog can show you more honest affection with a flick of his tail than a man can gather through a lifetime of handshakes. ~ Gene Hill

This was Sunny and Indie together on our bed when we lived in the city. We rescued Indie on the July 4th weekend of 2016. Which is why I named her Indie, for Independence day. For several months, Indie had our undivided attention and loved it! Then in September of 2016, we rescued Sunny and he came on the scene! Sunny and Indie got along from day one. Though Indie learned to take a back seat to Sunny and his needs! In those early years, Sunny could easily run up steps and jump up onto our bed. In fact, he was better than an alarm clock, as each morning, he would jump up and start panting for attention! I will never forget the bond between our two fur babies or time we shared together in the city. 

This morning after my usual routine, I drove my dad to his memory care center. I then came home and jumped onto a conference call with a researcher based in Texas. She is a nurse by training, who worked for many years administering chemotherapy to adult patients. We talked about the burnout rates among nurses and how she left bedside care and went back to school for her doctorate. Her research work fascinates me because she helps bereaved parents of children with cancer vocalize their grief and then they work together to create a legacy piece of music. So in essence telling a story of a child's life through a newly created song. I got the opportunity today to hear about her 5 week long research grief group, how this study is being received by parents, and some initial study results. 

But here's the interesting part about all of this..... though I maybe 15 years into my grief journey, I could easily jump back in time to recall that initial first year after Mattie died. What this tells me is that some things are so poignant, so life altering, that they are vividly recorded in my brain. What intrigued me about this researcher's group experience is that it is well moderated and that the participants truly get a lot out of connecting and learning from one another. This is a night and day experience from our own bereavement group experience. 

We joined a grief group about three months after Mattie died. I can still remember what the room looked like, how we were sitting, and who was moderating. The group was an utter disaster. So bad that after the first session, we never went back, and in fact the rest of the group members also declined to continue the process. I admit, talking about issues in front of a group is NOT my natural inclination. I did not even like this modality when I was training in graduate school. I was in my 20s then and less encumbered with the burdens of life. Nonetheless, even then I had trouble being a group participant. I wanted to help the other participants around me, rather than work with them on an equal playing field. I wasn't consciously doing this, but it was the end result. When I get in a group setting, I am more likely to want to listen and help others, than seek the help for myself. 

Therefore in 2009, joining a grief group, must have meant that I felt absolutely lost and was hoping the camaraderie of others walking this horrible journey would be of help. Needless to say it wasn't and not only wasn't it helpful, I would go as far as to say it was detrimental. It made me angry, it further made me feel isolated, and lost. I would have loved to work with the researcher I chatted with today, I have a feeling my group experience would have gone differently. 

We talked about phase two of her study and I was able to share my insights on the direction of this process. After our engaging hour long conversation, she ended the call by saying how impressed she is with Mattie Miracle. Particularly how we have changed the thinking regarding childhood cancer care. I found that very meaningful because as I told her the Psychosocial Standards of Care are Mattie's legacy. They were built on his harrowing cancer journey and the lessons we learned from his care. No amount of time could possibly go by that would ever block out or erase our experiences, the crises that we managed each day, our forever long grief journey, or the love we share with each other. These feelings live within my heart and nothing can touch or ever destroy them.