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FOREVER 9

Today is Ryan Mott’s birthday. He should be turning 10 but last year he lost his battle to cancer. Ryan had something called DIPG. Diffuse intrinsic pontine gliomas (DIPG) are highly aggressive and difficult to treat brain tumors found at the base of the brain. They are glial tumors, meaning they arise from the brain’s glial tissue—tissue made up of cells that help support and protect the brain’s neurons. DIPG is typically terminal at diagnosis.

For a moment, let’s think about that. Hearing the words. “Your child has cancer” is devastating enough but adding to that a terminal diagnosis, well that is just worse than devastating. Ryan’s parents were told they had 1 year with him and that didn’t seem enough but then they didn’t even get that. Ryan battled for 8 months. 8 months. Imagine only having your child from now until October. Now imagine what the first birthday would feel like without that child.

I have 9 year old twins. When I look at them on a day like today knowing that Michelle and Lynn can’t hold their son and celebrate his day, I feel physically ill. My stomach clenches and I shut off that part of my brain because I don’t want to think about what it must be like to be Ryan’s parents. It hurts too much to imagine my life without my children. But for them, there is no imagining. It is reality. It is their existence. Every single day without their child.

What can we do? So little to change his story but we can help change the story of his family by remembering Ryan and letting them know he mattered and will not be forgotten.

Happy Happy Birthday, Ryan. You are loved beyond measure, always in our thoughts, still part of our community and will never be forgotten. And not that I need to say it, because you already know it by how she fought for you through your journey and helped you make lots of special memories, but your mama loves you to the moon and back & that will never change.