Daily Archives: May 19, 2016

The New Normal

I just changed my 7 year olds “diaper” as she laid there unconscious and unresponsive. In my head I had visions of a child upset that it was bedtime. Saying, “Please mommy, one more story”. Wanting to sleep with her big sisters, just to get out of being in her own bed. Saying, “Goodnight mommy-sita.” Or Pew Pewing her daddy. Those days are gone. Months ago. Finding joy in anything is impossible for #KatherineTheBrave. It’s still hard to fathom that.
Tonight she would not respond to our attempts to wake her up, and she could not take down her pills or oils. For goodness sakes, she couldn’t even hold her own head up. I looked at David, he looked at me, “It might be time for a nasal tube.” His response was some sort of denial. Who can blame him… I’ve denied it for several weeks myself. She so much more aware at times, and others she’s just so out of it. It’s hard to balance anything when it’s always changing and so up in the air. Humans want structure. We crave routine. Cancer will cure you of your need for it, I assure you. I’m just so bummed about the recent decline. We need more time.

This nighttime delirium is common for Katherine lately though. Night times are harder for her. After a day full of anxieties over anything and everything you could imagine, she is just done. She fears the night. She fears it so much that she asks for it from the moment she wakes up, until the moment she goes to bed. Just so it could be done with and she won’t have to worry about it anymore. Almost like she wants to face it head on. After all of that stress, all day, she knocks out early and wakes up around 3 AM wondering what the heck happened. Scared. This is a routine. A new routine.

Well, I hope she wakes up at 3 AM again this time. That means she is still aware. We can take her in our arms and move her into our bed. Hug her. Tuck her in. Snuggle. And fall back to sleep. This means we get another day, because sadly, and according to the “rule book” on #DIPG, one day she won’t wake up this way. The way we now call “normal”. She will appear comatose, but she will continue to be aware cognitively. She will wonder why she can’t see, hear or feel us. She won’t be able to communicate this to us, nor will we be able to comfort her in any way. This child we are supposed to protect will suffer worse than any of us could imagine. She will get a punishment worse than any judge and jury could ever possibly hand down onto the hardest of criminals. And all because she’s a child, and not an adult, and because her cancer is deemed rare, and not valuable enough to invest in financially.

This is Diffuse Intrinsic Pontine Glioma. This is why we are angry. And this is why we will continue to fight.