Be a Warrior! Help us Fight DIPG!

The Day You Died


The day you died was like any other day. The sun rose the same way it did any other day. The warmth of it could be felt beaming down onto you once you stepped outside. Birds woke you with their music and joy. Everyone was either getting up to go to work or waking up on vacation. Children were eating the same breakfast, playing the same games, watching the same shows. Yet, this was not any other day.


The day you died, Valin was sleeping on the couch near your hospital bed, for fear of you leaving without him saying goodbye. Dad was on the floor and I was squished on the love seat next to your bed. We did not want to leave you, for fear of you leaving us. I eventually curled up like a cat at the foot of your bed and had my arms tucked under your sheets. I was gently massaging your feet and up your calves because I knew you enjoyed it with the pain you were having. You hadn’t spoken to us in a few days, including if you were in pain. So I just continued to do certain things, knowing you couldn’t communicate with us. Although I had fought it, I had fallen asleep ensuring my hands stayed on your skin, hoping you knew I was always there with you. I woke up with a start. I had heard crying before my eyes were open. Dad was kneeling next to your bed holding your hand, stroking your hair, eyes staring at you hoping to remember every inch of you. When I shot up, all Dad said through his tears was “his colour.” Your skin was grey, your lips were blue and your breathing shallow and slow.


Stealing a nap together



The day you died was not like any other day to us. We did not see the sun rise. We did not feel the warmth of it or noticed if there were birds chirping outside. We had no sense of time and didn’t even care if anyone was coming or going about their regular day. Not all children were eating and playing and laughing. Two in my own home were going through the unimaginable. My baby boy was dying while his older brother watched in dismay. This day we all surrounded you and continued to remind you that you are loved; how proud we are to call you our son and brother; how you touched us all and that we were all sorry for not being able to protect you.


No photos or celebration happened on this day. No laughter or silly songs were sung. The day you died, the world died with you.


A friend made this to honour Madox.



DIPG Warriors

Children that are fighting or lost the battle against DIPG.

Meet All DIPG Warriors