The first time Lily was sedated was on May 16, 2007. It was the evening. We had been at CHOP all day; received a brain tumor diagnosis; were given a surgery time; and Lily was hooked up to an IV cocktail of drugs made to control the hydrocephalus in her brain.

Hot packs. IV team. All pre-sedation.
The sedation has always been one of the most horrible things to me. Lily has been sedated close to 60 times for radiation and MRIs and surgeries and other procedures you don't want to know about. I begin worrying that she will never wake up--the old lady in my head starts listing imaginary people who have not woken up from a procedure. Despite the doctors request, I cannot stop rubbing Lily's back--I really don't want her asleep. I just want to leave and run to Mexico or Canada, because if I make it across the border, they can't keep us locked in this hell, right?

Sedation takes away Lily's control. It takes away my control--the mother who worried about naps and bedtimes and sleep schedules. Suddenly, a mix of sedatives--names I can list like those of my first cousins--are in charge.

Lily used to wake up angry. Even as a baby, her body would be fired with rage. She hated the loss of control--the drugs make her demeanor twisted.

It was as if she was fighting off a demon. I loved to see her fight away the sedation and fight away the brain tumor. It was actually what I wanted to do; but didn't: thrash and yell and scream. The louder she was the sooner we were allowed to leave; the sooner we could escape.

Now, Lily sleeps after sedation. They give her more drugs. We've learned to let her sleep it off longer. It means we stay trapped in purgatory for a little while longer. It means she wakes up a little less angry.

But, no matter how long she sleeps. Lily always wakes up. It is the waking-up that I have to cling to. It is the always that I have to hold on to.

Tomorrow, Lily will wake up; like she always does and we will escape, again.


  1. Loving your blog, Trish. This post was so touching and honest. Thanks for sharing your stories!


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