Katherine should be starting school on Monday. What would have been 2nd grade for our baby. A new teacher to smile at. New books to open and take in. New clothes to wear and be proud of. New friends to invite to sleepovers. New beginnings.
Katherine died on June 6th of an incurable brain cancer called #DIPG. Children diagnosed with this cancer live on average from 5 weeks to 9 months. Katherine fought her hardest for 12 long months. There is no cure and no child has ever survived this cancer. Those who live longer are grasping for more time, living in fear of every new MRI or symptom thats noticed. They know the statistics. We did too. Our government gives practically pennies to research a cure for this cancer. We have to fundraiser for drugs that make what little is left of their life, peaceful. They left Katherine to die. They left us to watch her die. The numbers of diagnosis’ are increasing. Yet there is still no cause for alarm. No ones coming to ask for more details about our lives. About our dead child. No ones investigating and adding details to some database labeled DIPG, investigating clusters, and increasing patterns.
Maybe it’s because they don’t feel my loss. They won’t be there to watch me fall apart and suffer in my own mind. They don’t know that my thoughts are toxic this evening. Angry. Bitter. Maybe that’s best… I’m not sure I could avoid physically expressing it to them…
I’ll remain here. Struggling to be. Anything. Missing my baby. Watching the kids go to school. Laughing. Living. Being. Missing her. I miss you baby. I am so sorry. I’m so damn sorry.
Our child was our home.
She kept this space alive with her energy.
She inspired us to live in the moment, right here.
She allowed us to love her.
She completed what was us.
It was meant to be, this home.
She made the sounds that filled our quiet places.
She was the creator of our cool breezes and sunshine.
That child is gone.
Our child is no longer here.
Our home is gone.
We struggle to live every moment.
Our home brings comfort, no more.
We fear the quiet places and cool breezes it once brought.
We hide from the signs of what was.
Now we struggle to be, anything.
Our home was our child.