Support pediatric cancer research by participating in these great 5K Run/Walks on Saturday, October 3rd. The Jared Coones Memorial Pumpkin 5K Run/Walk and the Natalie’s A.R.T. Foundation 5K and Family Fun Run are both great events for the family. Make sure to register today!
Jared Coones Memorial Pumpkin 5K Run/Walk
The Jared Coones Memorial Pumpkin 5K Run/Walk is held at Black Bob Elementary in Olathe, where Jared went to school. Jared lost his battle to Leukemia when he was ten years old. Eight years later, Jared’s Mom, Jayne, lost her battle to breast cancer. Jared’s Dad, Tom Coones started the Pumpkin Run in memory of Jared and Jayne. Over the last 17 years, Tom has raised hundreds of thousands of dollars for pediatric cancer research, Children’s Mercy, Ronald McDonald’s House and other beneficiares. At last year’s Pumpkin Run, Tom presented Kelly, Kyle, and Evie with the Jayne Coones Hope Award and the Pumpkin Run was a silver level sponsor of Allie’s Sale.
Jared Coones Memorial Pumpkin 5K Run/Walk
October 3, 2015 – 8:00 AM
Black Bob Elementary
14701 Brougham Dr
Olathe, KS 66062
Natalie’s A.R.T. Foundation 5K and Family Fun Run
The Natalie’s A.R.T. Foundation 5K and Family Fun Run at the South Creek Office Park in Overland Park. Natalie was a vibrant nine year old girl who passed away from DIPG in May of 2013 after a short 8-month battle. DIPG is a sister tumor to Allie’s gliomatosis cerebri, and Natalie and Allie only lived a mile apart from each other. Natalie’s parents, Steve and Ashley, started Natalie’s A.R.T. Foundation and the 5K as a way to honor and remember Natalie. Their mission is to raise awareness, fund research and improve the treatment experience for children battling cancer. Their beneficiaries include St. Jude’s Children’s Research Hospital and The Cure Starts Now. Allie will be one of the children honored at this year’s 5K and Family Fun Run.
Natalie’s A.R.T. Foundation 5K and Family Fun Run
October 3, 2015 – 8:00 AM
South Creek Office Park
7200 W 132nd St
Overland Park KS, 66213
We hope you have the chance to get out and enjoy the nice fall weather by participating in one of the two wonderful walks that benefit pediatric cancer research.
I struggle to be a grateful person overall even though I have been the recipient of so much kindness over the past two years. There have been so many incredible ways that family and friends have given me strength and love during such a tragic time. I have also been the recipient of kindness from strangers too. Most notably was the gift of the beautifully crafted Little Owl door that was featured in the documentary, The Gnomist. Such a precious gift and one that I will never figure out how to repay. It continues to provide hope and healing, and I will always treasure it.
But this post is not about that incredible act of kindness either. It’s about the simple act that someone can either make or break your day with. I traveled to Scottsdale in April where I was meeting some girlfriends for the weekend. I was really looking forward to leaving my reality and enjoying some sunshine. I exited the plane and headed down the huge escalator to the ground level at the Phoenix Sky Harbor airport. I had my carry-on bag with me. As I descended on the escalator, my bag was not securely positioned on the step. My bag fell and went flying down the 90 foot escalator like a torpedo. I looked ahead and saw a couple in their sixties towards the bottom of the escalator. Images of injuries and lawsuits flashed in my head. I panicked. I emitted some type of sound that was like an “AghhhughhOhhhhnoooo.” I ran down the moving steps chasing my bag that was way out of reach. My outburst caused them to turn around, and they zeroed in on the bag that was headed their way.
That’s where the kindness came in. The man yelled up to me, “I’ll catch it!” and he stuck out his foot to prevent my bag from crashing into them. He caught it and held it for me. I was mortified as I ran down to meet my bag. Embarrassed, I apologized and then they actually thanked me for giving them a heads up. They made me feel like it was no big deal. They didn’t tell me to be more careful, and they didn’t make me feel worse by telling me that they could have been hurt. We said goodbye and went our separate ways. I was still embarrassed as I walked outside towards the taxi stand, but I wasn’t in tears. I surely would have been if I had been yelled at by strangers in the airport. I’m teetering on a cliff these days, and I only need a hint of anger to let out the emotional baggage that I’ve carried since Allie’s death. But instead of my eyes filling with tears, I had a good story to laugh at that night with my friends. A story about the kindness of strangers mixed with my usual antics of pretending (and failing) to be an adult.
Last week, I was at Evie’s school for a muffins with parents event in the morning before I headed to work. I don’t eat breakfast and Evie doesn’t drink coffee, so we parted ways upon entering the cafeteria to our respective lines. I was standing behind a dad in the coffee line that I didn’t know. He poured his coffee from one of those large cardboard boxes from Starbucks. As he went to set it down, he knocked over his coffee cup all over my jeans and onto the floor. Not an ideal way to start the morning. But as that coffee came pouring down my leg, all I could see was my bag shooting down that escalator. He apologized, and I tried to emulate the strangers at the airport. I told him it was no big deal, and I went to get paper towels from the bathroom to help him clean it up.
I went to work that day carrying the scent of coffee (which is a smell I love), and I felt truly grateful for remembering the lesson I learned from the baggage incident at PHX. Those kind strangers taught me a lot in that one moment, and that’s one piece of baggage that I hope I can always hold onto.
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 read a lot. I love to consume information, and I’m always reading 10 things about this or 15 ways to do this. Well I read somewhere about the habits of miserable people, and there was one thing on the list that really stood out for me. The list stated that miserable people glorify or vilify the past. They blame their past, and they glorify a missed chance for a better life. They obsess about the would haves or the should haves rather than being present. I have played this game endlessly since Allie died. It starts with the question, “What if Allie hadn’t died from cancer?” It ends with, “Was I not supposed to have had children?” It’s a game of pure torture, and it has made me miserable.
Near the end of 2014, I had breakfast with a friend that also lives with the terrible pain of having a child die. During our conversation, she mentioned that someone told her, “I am glad to see you are moving forward, not moving on.” I have given this a lot of thought over the past month, and that is what I am striving for in 2015. I am unable to move on, and no one should expect a grieving parent to move on. It’s not something you get over. Allie is my daughter, and I will always be her mom. I refuse to move on from that and the bond that Al and I share is forever. However, I do have to move forward. If I live in the past or think about the what ifs, I am torturing myself and doing a huge disservice to Evie and everyone else that I love. I cannot be stuck.
I know a lot of people choose one word to center their year around rather than making a resolution for the new year. I decided to do this for the first time in 2015, and the word I chose was forward. I wrote it on a post-it note and stuck it to my computer monitor at work. The word was chosen to help me in respect to my past, my grief, and my pain. Here I am, three weeks in, and I can’t say that has already been accomplished. But, I have found that my word has helped me in places where I didn’t think I needed help. Work has been my sanctuary since Allie died. It’s a place where I can focus on a task and not think about my pain. But now that I see that post-it daily on my monitor at work, it has helped me to embrace new ideas in the workplace. It has also stopped me from playing my what if game of mental torture, and I haven’t made anything worse in my life.
I was having trouble figuring out how to end this post when I saw this fitting quote by Martin Luther King, Jr., today, on MLK Day.
“If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.”
I am a long way from flying, running, or even walking. I am starting with a crawl, but at least it’s headed in the right direction. And, as I crawl forward from this dark place, I carry Allie in my heart.
You are always with me, Al, and there is nothing miserable about that.