The first international gliomatosis cerebri conference was held at the Institut Curie in Paris, France on March 26th and 27th. The conference brought together the top physicians and researchers in the world. Experts from Weill Cornell, Dana-Farber, Memorial Sloan-Kettering, Johns Hopkins, and St. Jude’s gathered along with the families devastated by GC. We united to build a foundation for collaboration and to advance the research for GC. Such a successful meeting filled with positivity, progress, and much hope!
Oh, Valentine’s Day. It’s now one of those days that brings extra sadness to my heart. Six years ago, on 2/14/09, I was given the best gift ever. I found out I was pregnant with my second child. I remember being so excited, and I couldn’t wait for Evie to become a big sister. Allie would be born healthy later that year. Our family was complete, my heart was whole, and I had no idea that tragedy was waiting for us around the corner.
Last Valentine’s Day, I sat around crying looking at Allie’s Valentine’s Day video and pictures from her preschool class party. This year, I had planned to make it through this holiday by trying to focus on Evie and the love that remained in our house instead of the past. So, Kyle and I bought tickets online to take Evie to see Paddington at the movies that night. But that afternoon, Evie was invited to spend the night at a friend’s house. She wanted to go so badly, and I didn’t want my broken heart to keep her from seeing her friend. So we returned the Paddington tickets to the theater and dropped Evie off at her friend’s house.
That left two broken hearted people, Kyle and myself, to find something to do last minute on Valentine’s Day. Dinner reservations weren’t an option this late, but I knew we couldn’t stay home either. We found an alternative cover band playing at a bar close to home and decided it was our best option. I love a good cover band, and it was a bonus that they played music from the 90s. Kyle and I started dating in the late 90s, and the songs from then remind us of a much easier time. The band was called The Disappointments. What a fitting name for what our lives ended up becoming.
Kansas City is small, and it seems like I run into someone I know every time I leave the house. Valentine’s night at the bar was no different. I ran into a guy that works in the same building as me. This is not someone that I know well, but just someone that I say hello to passing in the hall. I introduced him to Kyle, and he started telling us about his recent vacation to Colorado with his daughter. His daughter named Allie. I resisted reminding him that I also had a daughter named Allie. I didn’t tell him that my Allie didn’t make it to Colorado because she was dying of brain cancer when we had planned to go. Valentine’s Day is depressing enough without the details of my story.
Besides my work neighbor, the bar was crowded with many other single people trying to survive Valentine’s Day. I’m sure they were looking at Kyle and I thinking we should be doing something better than hanging out at a bar on Valentine’s Day. I could feel them looking at us wondering why these married people crashed their party. They didn’t come to a bar to see couples together on Valentine’s Day. I wanted to shout and tell them not to judge. I wanted to challenge them to compare their scars with mine. I wanted to scream, “My heart is more broken than yours!”
After a bit, Kyle and I saw a spot open up at the bar and grabbed the open chairs. There, I sat next to a girl about my age, and she looked to be alone. Between the band’s sets, she started talking to me and told me that she had just got dumped a week ago. She was twice divorced, and she was regretting that she always chose the wrong guy. I told her that I married the right guy, but my life still sucked. She nodded, and luckily for both of our sad souls, the band started back up. My new friend said goodbye a little while later. She laughed and told me she was going to meet her married friends to be their fifth wheel on Valentine’s Day.
So that just left Kyle and I to sit there and listen to the band. There, we sat in a bar with our broken hearts listening to The Disappointments on Valentine’s Day. And, while it sounds like an extremely depressing scene from an indy film, it wasn’t. The band was really good. So good that we were both able to forget our shared pain for a little bit. And, for the first time since Allie died, there was a glimpse of the old Kyle and I together. For just a moment, we were not broken and shattered. We were just two kids back in the 90s with no broken hearts or disappointments in sight.
It’s hard to celebrate a day of love when you are miserable. It’s been difficult for me to accept that there’s no cure for the ache in my heart. I will always be missing Allie and wishing she was here. But, sometimes you have to be grateful that there is a moment when the anger and sadness ease. And, when it does, you just might see that you are lucky to have someone to share the disappointments with.
I don’t save many things. I have a fear of hoarding and a good purge has always done wonders for my mood. And, yes, I threw away many things Allie made or colored long ago when I thought she was healthy. I wasn’t going to be that mom that held on to everything and lived in the past. I do have a purple bin with a few of Allie’s projects in the basement that I will always keep. But even after Allie’s death, I don’t sit in the basement looking at her artwork. Even the thought of it makes my anxiety rise. I have to be able to breathe.
I’ve changed a lot over the past year and a half, but I still don’t save everything that Evie creates. Evie loves to write and draw, and she brings home ten things a day. I filter most of it, and it’s almost comical now when Evie sees her latest masterpiece in the recycle bin. She’s not the least bit surprised. It’s almost expected at this point.
But I did save a turkey feather that we created as a family when Evie was in kindergarten. I came across it last month as I was pulling things out of our storage room to prepare for Allie’s Sale. I wasn’t just looking at something that we made two years ago. I was looking at a life that belonged to someone else. A life that I am so jealous of and would give anything to have again.
The assignment was to put things on the turkey feather that we were thankful for as a family. I remember Evie choosing most of the items that went on there…the Nintendo DS, the Elf on the Shelf, and the art supplies. We put pictures of Evie with her friends and family and one of Evie and Allie hugging at the top of the feather.
We put other things that we were thankful for too such as trips, home, food, the earth, school, USA, KU, and science (Kyle’s contribution). Oh, and there’s a picture of our dog, Meeko. Evie’s feather was finished and ready to be turned in when we remembered that we still had a dog. We felt bad that we forgot poor Meeko and stuck him in the middle of the feather as our apology.
There is one word that surprised me when I saw it on the turkey feather. Health. Over the past year and a half, I have kicked myself a million times for taking my healthy girls for granted. But somewhere before being shoved into a world of childhood cancer, we had appreciated our health and stuck it on the feather. It brings me a little relief to see that word on there, but I still know deep down that I was never thankful enough for this gift.
Allie’s contribution is on the feather as well. There is one single owl sticker near the top of that photo of the girls hugging. That is the closest Allie got to having a kindergarten turkey feather. Next year, Allie’s friends will decorate kindergarten turkey feathers with things that they and their families hold dear. But this was it for our family. We didn’t know it at the time, but we would only get to do this once.
Evie’s feather had to be turned in during the early part of November so that it could be displayed on the wall near the kindergarten classroom. Two weeks later, Allie would be asked what she was thankful for in her preschool classroom. She didn’t mention the things that I thought she would. There was no mention of owls. She didn’t mention Ducky, her blankie, or any of her toys either. And sadly, Meeko was forgotten yet again. Allie said she was thankful for three things: “the leaves on trees, my sister, and my family.”
Sorry Meeko, but I can’t imagine a more perfect feather than that.
When talking about what happened to Allie, I choose to say, “I have a daughter that died.” I don’t say, “I lost a daughter.” There is a reason for this. I lost Allie once, but it wasn’t to brain cancer. I lost her at Chuck E. Cheese.
I often wonder how I got to this place. This was not supposed to be my life. September is upon us, and I should be getting Allie ready for her last year of preschool. I should be buying her a backpack and meeting her new teacher. I should be making plans for her 5th birthday party. Or at least that’s what I thought I would be doing. So how in the world did I get here?