Each month, the Children’s Brain Tumor Tissue Consortium highlights the stories and contributions of patient families, clinicians and researchers in “Collaborative Corner” to find cures for pediatric brain tumors. If you would like to share your story as a guest blogger, please email firstname.lastname@example.org
By Kristen Gillette, Founder/Executive Director, The Kortney Rose Foundation
From November 28, 2018
I was discussing what to write for this blog post with my husband Rich. His comment helped to define its contents. He said in Kortney’s memory he often parallels her happy, playful spirit and her love of roller coasters with this saying, “Life is a roller coaster. It has its ups and down. I believe, like Kortney, that the goal of living each day is to have fun.” Right after Kortney was diagnosed we went to a doctor in New York City who told us the horrible prognosis and suggested our next course of action. The magnitude of what he told us was incomprehensible and on the hour and a half train ride home I had trouble not crying. I didn’t want to cry in front of Kortney and her sister, Kasey, but my eyes kept leaking. In true Kortney fashion, she said to me, “Mom, stop crying you’re making me sad. When I’m sad I just think of things that make me happy. Mom, think happy thoughts.” This helped to quell the onslaught of tears for a short period of time. Kortney’s spirit is what carried us through the many dark days and even today when I feel bad, her words inspire me, “Mom think happy thoughts!”
November is a time for family gatherings around Thanksgiving and the official kick off of the holiday season. For our family it has an added meaning since Kortney’s birthday was November 27. At least it was for 9 years. Two weeks after Kortney’s 9th birthday she was diagnosed with a Diffuse Intrinsic Pontine Glioma (DIPG) that would take her life, a little over 4 months later. For many years after losing Kortney, dates were monumental to me and held so much significance, especially her birthday. I know all families that have lost a child can unfortunately relate to this. On November 27th, Kortney would’ve turned 22 years old. This is unfathomable to me since she died at age 9. My other daughter is 25 and while that too is unbelievable, we watched her grow and change into the woman she is today. Not having that opportunity with Kortney makes it harder to believe that she would be 22.
When we lost Kortney we didn’t know anyone else who had lost a child. We were introduced to a father that had lost a son three years prior from a heart issue. As the only person I knew who had lost a child at a young age, he was my frame of reference. While speaking with the father only a couple of months after Kortney’s death, I asked him, “Does “it” got better three years after losing a child?” His response was, “No.” I almost dropped the phone, fell on the floor and began to cry, but I held it together at least until the call was over. As soon as I hung up I started to cry. It was devastating for me to hear that after three years I may not feel any better than I did then, only a couple of months after losing Kortney. I just needed a shred of hope and actually wished he had lied to me. I know better now that everyone grieves differently. That interaction helped to formulate how I would handle a similar situation if confronted it in the future. At that early stage, and after his comment I didn’t know if I would ever feel better but I knew if a newly grieving parent were to ask me this question somewhere down the line, I would want to give them some hope, even if I had to lie to do it. For me, time has lessened the pain, dates don’t cause me immobility and sadness in the same way as they used to, and our life has returned to as normal is it can be.
If a newly grieving parent is reading this I know you may not feel like you will ever be happy again. I thought the same thing, but for me it has happened and there isn’t the need to lie about it. I can honestly say our family is able to experience joy again. I’m not a religious person, and am generally a skeptic, but in the past year or so I’ve come to admit that perhaps Kortney was put on this earth to make her mark and inspire my leap into fundraising for pediatric brain tumor research. Fundraising was not something I liked, nor thought I would do as a job, but life sure can change things. Working through The Kortney Rose Foundation to raise funds to support collaborative research to accelerate findings for kids with brain tumors, has provided something positive for me to focus on. I’m grateful for all of the passionate researchers, clinicians, staff, foundation members, donors and families I’ve met along the way in these past 12 years. I’m confident our donations are making a difference and look forward to seeing some positive outcomes in my life time.
Wising everyone a very healthy and happy holidays season.
Kristen Gillette (Kortney’s Mom) Founder/Executive Director The Kortney Rose Foundation