This one is tough. Loose ends that open up the mind to imagination.
We got a message from Heather at St Jude a few weeks back. Heather is the head of the “Child-Life/Teen-Life” department at St. Jude. Kids of all ages have time with their peers in Heather’s department to bond over weekly activities. Summer made some great friends and I cannot stress how important this service was for our journey at St. Jude.
Heather’s message said that she had found another project that Summer had been working on before she left. She wanted to know if we wanted it. We had no idea what it was, but of course we did! Last week the box arrived. It actually arrived before my work trip that Angela was joining me on. Angela asked me if she should open it and cry now. Or later? She opted for later and the box sat for a few days until we got home this weekend.
Once opened, we found a creative art piece that Summer that appeared 99% finished and a card from Heather. The art piece is a picture that is very familiar to me. It’s Summer’s MRI profile with the image of the tumor in the back of her skull… While imaged to the depth of her eyeballs and what looks to be an “open” mouth area. It’s all exaggerated and weird, but she really did like using this image. I think there was a bit of “freak factor” that amused Summer and she used this to make others uncomfortable.
She had a Magic (card game) card made with this image and it had a quote at the bottom that said “It just be like that sometimes”. You might think she was taking this very lightly… But I know this was her using humor to fight off the terror. She was definitely scared but you were hard-pressed to find her feeling sorry for herself.
The point in fact is this image as it’s reused with the words “Progress” “Fight” and “Struggle”.
The project is about 8″ by 8″ and is beautifully covered in a heavy layer of epoxy resin. She had been using resin a lot after convincing Heather to get the materials needed for making jewelry and other “plasticy” bits. Some of her last group projects had some amazing resin-covered pictures put together in collaboration. They really stepped up the level of what the “kids” were doing on the art wall at the hospital.
Progress, Fight, and Struggle tell me that this was being worked on as she was finishing treatment. While it’s not wildly optimistic, it’s all about putting in the hard work to get through her treatment. She was fighting. Struggle? She, more than anyone I know, knew what this word meant.
Progress was happening with every day we chipped off while going through the treatment regimen.
Part of me wonders if this piece had any value to her after her terminal diagnosis. We were on a fast track back home after the last MRI showed additional tumors growing in her spine. I think we were there for hours, not days, after the “Panera Bread” incident. Did she look at this project again? Did she remember it was still in the Child Life room? Did she want to leave this behind?
While I knew the odds as well as Summer… All of the treatment was supposed to lead to a happy ending. If you knew that it was not going to work… You certainly would not go through the hells that she succumbed to from June 2022 to May of 2023.
This part probably deserves another post… But… Its a blog. Deal with it.
When my Dad was in a car accident and eventually passed… I can recall a major memory from that night. Don and I were taken to my Grandpa Dan’s house in rural Fairbury. It was late and I remember sitting in their living room wondering what was going on. The TV was turned on and I believe it was a late-night talk show was casting a glow in the room. Grandma Shirley was there, sitting in the attached kitchen and I remember asking for a “Twinkie”. We didn’t get those at home, but I knew she had them. Grandma brought me the whole box and said I could have all the Twinkies I wanted.
Of course, I didn’t know what was happening to my Dad and I had no idea that my family was scrambling at the wreck site near Gibson City and hospital as he left this world.
My very small worldview was being satiated with a Hostess snack cake.
Right now we have complete chaos in the house. The kid’s bathroom and shower were done earlier in hopes of helping Summer while home. In a dose of “satiation”, we pulled the trigger on doing the master bathroom renovation as well after the “Summer Shower” was completed. (Even though Summer is not here to use it.)
This was not out of the blue. We had Gabbert give us an estimate on the project 3 years ago and Baldovin more recently. Dustin at Ekhoff has worked with us before and he was very aware of our situation with Summer. His crew was working super fast to get the shower done in the kid’s bathroom and (I believe from what I saw) gave us a great deal on the project.
Angela said she wanted our bathroom fixed while they were here. I was indifferent. I remember talking to my mom while we were dealing with the funeral or hospice. Mom said, “Let her get the bathroom”. It really felt like that moment as a kid in Fairbury. Have the whole box.
Is that a stretch for an analogy? Different times in our lives call for different Twinkies.
Fortunately or unfortunately, it’s kept our normally quiet farm and house busy.
We got the package with Summer’s art creation from St. Jude and I have had a few melancholy moments this week. There is no place to hide at work. And with construction guys at our house on and off since the visitation, there is no place to hide at home.
Maybe that’s good? It’s definitely kept me from calling into work, sitting at home, and feeling sorry for myself.