No matter now hard I try to relax, and no matter how calm I am or think I am going into one of these trips, when I am here, I am in this constant state of anxiety. I literally have adrenaline running through my body the majority of day and night while I’m here.
Yesterday I found out a great deal of secondhand information about the trial. After that and for the rest of the day (and much of the night) I spent my time writing down questions and thinking. Do I have more questions, how do I ask this question or that question? Today I woke up at 4am Vancouver time and started thinking again.
Finally, at 11am, we met with Dr. Muenzer. He told me about what’s happened with the trial in the past monthes and what the next monthes will look like. I really like Dr. Muenzer and his team and I’m glad they’re who are in charge of this trial, but it’s still hard. I have little to no control over any of it.
Now I get to try to sleep tonight thinking about the neurocognitive tests tomorrow. If he qualifies, if he doesn’t. Life, death. If he does, will he get in for the next qualifying test before he develops hydrocephalus? If he does, will he get drug before his IQ drops to a point of no return? At least I can face these terrifying questions on the surface. Because, as scary as they are, they’re hopeful. The alternative, not getting into the trial, I can’t go there.
When I’m not in North Carolina I can get busy with other life things. Like homeschooling. Like fundraising. Like parenting. Like taking care of myself. Like hugging and reading and snuggling. But here, here is about life or death. Here is about saving my child’s life. It’s about fighting. It’s about fear. And it’s on me. Ry’s job is about working to support our family. And here, in North Carolina, it’s about supporting me. And he does that well. But me, my job is to ask the right questions, to say the right things, to know when to make the phone call, to have the right information, to talk to the right people. So I can save Trey’s life. So I’ve come to accept that sleep, in North Carolina, is not much of a reality.
