My heart has felt so heavy lately. It’s almost hard to differentiate anymore because it ALWAYS feels heavy. But lately, it’s this pulling and tugging from recent events and news and stories shared among the childhood cancer community that is coupled with my own difficulties wrapping my brain around the fact that our own story was rapidly unraveling this very moment 18 months ago…I just didn’t know it yet. 18 months ago this very day, I felt fairly confident that I would be walking back into the fight with my family – hand in hand into the fire. But if you asked me 18 months ago this very moment if I thought that Kate might die, I would’ve laughed at you. MY girl? No. 18 months ago I was about to be proven oh so very, very wrong.
One of the UP sides of being so heavily involved in the lives and stories of other children with cancer is that you get the privilege of falling in love with them….you get to feel the hopes and joys in their parents’ eyes and celebrate their successes with them. You get to witness strength and bravery that legends are made from.
Witness a child battling cancer and I promise you will be changed forever.
But the DOWN side is that you also open yourself up to the heartbreak that comes as a direct result of that very same love. I hold my breath with every relapse. I pray with every procedure and scan. I cry with every loss. (I really do. I cry each and every time and I say a prayer to my Kate that always ends with me telling her a little bit about the child and what they loved so they can quickly be found. I ask her for two things, always. I ask that she find them and hug them as soon as possible and that she teach them a little bit about what she’s learned.)
It can be really discouraging here in the world of social media; I never know what posts are going to strike a chord with someone. It can be disheartening to share a story about what feels like “nothing” and receive hundreds of likes & comments. Then, I share a photo of a brave child and so desperately want the viewer to know and see what I do. That post then only gets a handful of comments. I get it. I understand. It’s hard. (I really do.)
But I promised.
You see, I didn’t just promise Kate that I would tell her story. I didn’t just promise to share HER life and love with the world. Every one of these children deserves for their stories to be shared and every single one of them deserved or deserves the opportunity of a future. Many of them were robbed of that and I will NOT let that be forgotten.
Today, darling Bailey Lynn has been in heaven for two years. She was diagnosed with high risk, stage 4 neuroblastoma. Bailey, your beautiful eyes will always be what I think of when I remember you.
Today, little Simone Jolie would be four years old. She celebrates her birthday in heaven, having lived only 26 months here on earth. Simone, I wish I had gotten a chance to know you in life. Your joy radiated and your family loves and misses you so much.
Today, beautiful Lilian Harper would be five years old. She was diagnosed with ALL on her third birthday and passed away before her fourth. I know she and Kate are thick as thieves in heaven. Lily, you remind me so much of my Kate…wise beyond your years. I wish I’d known you here, too, sweet girl.
Parker LeAnn joined the angels in heaven at the age of nine just yesterday. Parker battled DIPG for over 500 days. I know heaven turned purpl
e and threw the biggest dance party when she arrived last night. Parker, your story touched me deeply and I just prayed and hoped YOURS would be the story to change it all.
Sweet Vara James started treatment for her relapse yesterday and she’s already feeling crummy. SVJ, every hope and prayer I have is with you and your family inside the Bat Cave, darling girl. We love you.
We love you. ALL of you.