The story of the purple scarf is not my story. I found it in one of Lori’s notebooks. The story started and stopped many times throughout the notebook. In between, there were lists for grocery shopping, questions for doctors, information about clinical trials, random sketches and much more. She titled this story, not me. I simply found all of the pages that went together to tell it.
The Purple Scarf
We walked downstairs together, holding hands, ready to start our day. I felt pretty good and was listening to her as she talked away. I went to the kitchen to find something for breakfast and she went into the family room. I mixed the milk in with the oatmeal and glanced at her in the other room. She was playing with something near the couch. I called to her.
She didn’t come right away, so I walked over to see what she was doing. That’s when I first saw the Purple Scarf. I asked her where she got it from and she motioned to a spot on the couch. It was a silky scarf, vibrant shades of purple. It didn’t look new and it didn’t look old, but what I did know was that it was not mine.
Throughout the day, Lilly played with the scarf. She wore it like a cape, she wrapped up her dolls like a blanket and she carried it wherever we went. We played dress up with it and I helped turn the scarf into a dress. When it was time to go out for the day, I pulled out a backpack and started to load up the essentials and when finished, I put the scarf in there too.
Days went by and the routine stayed much the same. When I was tired, I retreated to my husbands chair. She climbed up on my lap and laid her head on my chest. We read all of her favorite books and I showed her how to draw the most beautiful flowers.
Yesterday, Kim stopped by with Kara. The girls ran off to play while we talked. We talked about the kids and Kim had just finished telling me how Kara doesn’t really play with dolls, when the girls came running in. Kara was holding an American Girl doll all dressed up. We looked at each other and laughed. Lilly was holding her blue stuffed animal. It was wrapped up tight with the purple scarf. I told Kim about the scarf and she too had no answers for where it came from.
Weeks have gone by and I’m ready to go back for treatment. I packed up my things into my backpack. The most difficult days of the month lie ahead. Lilly joined me in the bedroom and when she walked in, she was carrying the purple scarf. She brought it to me and we sat down on the side of the bed. I tied a couple of knots in the scarf and showed her how to twirl it. She caught on quickly and she smiled from ear to ear. The spinning colors lit up the room. When she stopped, she hopped over to my backpack and placed the scarf inside.
I did not go home from treatment that day. Some complications to the medications earned me a few days in the hospital. I knew things were not getting better and I needed to prepare myself for the months to come. Inside my backpack, I pulled out a notebook, a beautiful design on the front, given to me by my Mother In Law. I started to draw the first thing that came to mind. A little girl, standing and twirling a purple scarf.
When I was diagnosed with the reoccurrence, I knew the fight would be challenging. Each trip to the doctor or the hospital became more difficult. And each time, my backpack grew heavier as I was filling it with my life. But now I knew that in order to continue to fight, I needed to lighten the load. My backpack was filled to the brim with my life’s journey. However, the journey I was now on needed to be different.
I opened the backpack and removed all of the files from work. I left them on my desk at home and immediately, the bag seemed lighter. I pulled out one notebook and found that most of it had already been filled with medical information, clinical trials, test results and questions for doctors. I needed a new notebook. Lilly and I got into the car and headed for Target. I looked in my mirror at her and she was playing with the purple scarf. In my own reflection in the mirror I could see on my head, my own scarf. When we arrived at the store, I helped her wrap it around her hair like mine.
We both bought notebooks that day. And that night, we sat in Matt’s recliner drawing together. After she went to bed, I pulled out my notebook and started to write a list of all the things I had going on in my life. One by one, I crossed off the items that were weighing me down, the ones that filled up my backpack making it too much to carry. I needed to have the same warrior mentality I had the first time. I needed a plan. So I created a road map of action.
I sit now after the exhaustion of tearing through the backpack and reading over the road map that I planned out. You read it over and over again. Then you realize that the map you planned out will not take you to where you need to go so once again, you have no map at all. You muster the strength to go through the backpack again, which feels heavier than before and continue on.
I must have fallen asleep in the chair because next thing I knew, Matt was asking me if I needed anything and Lilly was standing next to me. Morning had arrived with a new day. Lilly already had breakfast and Matt had brought in her notebook and crayons. She happily sat at the table near me drawing more flowers.
As your days go by and the treatments come and go, you realize that you can no longer carry the weight of your backpack. So you find a nice place to sit and cool off. You slowly open up the pack and start to take out what’s inside. You know you can’t continue on with everything in your pack, it’s just too heavy now, so you begin to see what items you can let go of.
Matt has been the one to communicate updates with his family and our friends. That alone is a huge weight out of the bag. I have tried to stay in touch with as many people as I can, when I can, but too often, it leaves me drained. So I prefer to focus on my family. It was a beautiful day, so I put down the notebook and Lilly and I went outside. I had started to plant some flowers in the boxes that hang from the railing of the deck a couple weeks ago. I felt pretty good, so Lilly and I went to work.
Lilly loved smelling the flowers. Each one I pulled out of the carton, was carefully inspected by Lilly. I gently lined them in the box and together we spread the dirt around them. After planting them, I brought out my watering can and Lilly had her own small can too. I sat in the chair on the deck to admire the work while Lilly was playing with and blowing bubbles.
Later that day, Amy came to visit and I wanted to ask her about the purple scarf. I couldn’t find it. I asked Lilly and she didn’t know either. I pulled over my backpack which was much lighter these days and looked inside but it wasn’t there either. We looked in Lilly’s room and we looked in my room. We even looked in the car. No sign of the purple scarf.
The next treatment went well. I was home and feeling more like myself. It is strange how sometimes the day of treatment is the day I feel the best. I was upstairs, sitting in Matt’s chair with Lilly next to me. I was going through some pictures and showing Lilly. To my amazement, Lilly recognized almost everyone in the pictures. She identified family and friends and was almost always correct. I sent Matt to Wolf Camera the other day to get all of the pictures off of my camera and printed. While Lilly was looking at the people, I was looking at the pictures I took in our yard. I wanted to choose some of the 5x7’s I was interested in painting and I wanted to figure out a way to best display these in clear covers without them sliding all over. I made a pile of pictures for Matt to go and get enlarged for frames.
I gathered the pictures from Lilly to put back into the envelopes when one of the pictures caught my eye. A picture of Lilly, in the family room. She was smiling big for the camera. In the background, you could see tucked into the corner of the couch, the purple scarf. There were 3 pictures from that moment, all of Lilly standing essentially in the same spot. In all three you could see the couch, but only in one was the purple scarf.
I haven’t been feeling well for several days so my doctor wanted me to go back to the hospital. I pulled out my backpack and looked inside at the few things that were left. I emptied them on to the floor and with a clean bag, I packed some clothes, a notebook, a book, a magazine and some toiletries. I was in the hospital for just over a week. Matt was there every day and night while my Mom watched over Lilly. On Thursday, he brought her to see me. It made my day and gave me the strength to push through the rest of the week. She sat with me on the bed and played with some of the plastic gloves that were kept near the door. Matt blew one up like a balloon and she was enamored with it.
While Lilly and I played, Matt sat quietly reading his book. My energy was low, but with Lilly, I was able to stay engaged. Together we made a wreath out of the supplies I asked Matt to bring. Lilly was so proud of the finished product. She shrieked with excitement to get Matt’s attention to show him. I started to get tired and Matt told Lilly that it was time to go. Lilly was walking around the room, gathering her things. Then she came over to say good-bye. She hopped up again on the bed and with her face close to mine, she pointed at my head and told me she loved my scarf, that it was so pretty. Then she asked if I had another one she could wear. I told her I didn’t, but that didn’t stop her from rummaging through my backpack. Much to her disappointment, she didn’t find a scarf and with that, she was ready to go.
It seemed like a very long time since I had been home. The week in the hospital felt like a month. I was so happy to be back in my own house, sitting in Matt’s chair. I started to think about Lilly and wanted to write her a note. I reached down for my backpack, for the notebook I knew was inside but instead the bag was empty. I looked again and was surprised that it wasn’t there. I mustered up the energy to get out of the chair and looked around the room. The notebook was not there. I started to head for the stairs to call down to Matt to ask if I left it down there, but on my way, I walked past Lilly’s door and peaked inside. She was sound asleep in her bed. I watched her sleeping for just a moment, soaking in the joy. She is so tiny. Her head on the pillow, her stuffed animal next to her. The blankets tucked all around her, I could only see her head and one arm and the blanket that she was holding tight in her hand. As I looked closer, I could see her own notebook laying next to her. So I quietly walked in and carefully picked up the notebook from the bed. As I did, Lilly quietly turned and her other arm came out from the covers and in her hand she was holding the purple scarf.
Although I am tired, the journey continues on. I feel lighter today, my back pack is empty and I begin to feel like I have
If you are feeling like I did, you are wanting more of the story. Unfortunately, that is how the story ended and as much as I hoped there was more of it somewhere else in the notebook, there just wasn’t. I vaguely recall those days and possibly being asked about the purple scarf. The wonderful part of the story for me is the glimpse into the daily lives of Lilly and Lori. I recall many of the things that Lori talked about, but those were from my own view. Now I have Lori's view too. And if you recall hearing about the scarf, or have any additional information to add to this story, please make sure you leave a comment.