Be a Warrior! Help us Fight DIPG!



I’ve been told I’m not coping well. I’ve been told it should be easier by now. I’ve been told take some medication so you can learn to live again. I’ve been told so many useless, unhelpful things. Things I never once asked for. But I do have a request. I DON’T want your opinion how I am coping or handling this grief. I DON’T want you telling me how a person you know is doing SO much better than I am at this stage. I DON’T want you sharing how you dealt with your grief when your elderly mother or pet died. IT IS NOT THE SAME!!!! I DON’T want to hear any of it!


What I do want is for you to be accepting of my grief. Yes, I understand it makes you uncomfortable as it makes me uncomfortable to be so exposed. I want you to just BE with me. No judgement, no “fixing”, and sometimes no words. I want to know I have a friend in you that accepts me for me, and all that has happened. I want you to try, no matter how difficult it is on your heart, and think how you would feel if your child was ripped from you. I want you to understand how difficult it is day to day to rise out of bed for mundane tasks. I want you to know some days are good while others are a major struggle.


You should also know I cry often alone in bed while my husband is asleep. Struggling to keep quiet so I don’t wake him. Other times I sit on the couch in the dark straining to hear my son’s voice call me again, Momma. At times when I don’t sleep, I sit on the floor square to the television, watching old home movies. Laughing, crying, remembering, memorizing. What you don’t know is that I put on a smile when I am around you. That fake smile is full when I am at work with my patients, even though my mind is swirling with thoughts of my son. Sometimes someone will say one word or I will notice something and it will instantly bring me back to a specific memory. It literally is jarring and difficult to move to the current.


Then there are the certain days through the year that really debilitate me. The day my son should celebrate his birthday. The day he died. The day we buried him. And the day like today; the day he was diagnosed with brain cancer. I refuse to fake it on such a mind numbing day. Don’t worry, I did you a favour by giving my shift away so you didn’t have to “deal” with my emotions. Instead I will go to my sons graveside and ask him for forgiveness.  Yes, I ask my baby boy for forgiveness because I didn’t protect him like I promised I would. I didn’t save him like a mother should. It is a guilt I will live with my entire life, so please don’t tell me not to feel this way. It won’t change how my heart feels.


I just want to know you are there for me. To know you are not judging. To know you don’t understand but you have tried and it scares you to your core. To know you will support me. To know that you love me. Know that I love and appreciate you.


Waiting to see the ophthalmologist 2014



DIPG Warriors

Children that are fighting or lost the battle against DIPG.

Meet All DIPG Warriors