To give you an idea of where this is coming from, Dr. Muenzer told me that if this IT drug had already been proven safe and effective, he would treat Trey with it. He thinks it would benefit Trey. So now I’m entertaining the possibility that Trey does need and will at some point qualify for this trial. But if I get to this point in thinking, it means I’m also entertaining the possibility that Trey has progressive brain disease. Which means death, and a long, awful road there while you watch your child’s skills and development and personality dim like a light, and eventually go out, while at the same time you’re exhausted and frustrated because they don’t sleep and are very aggressive.
For 4.5 years, I’ve been holding onto hope that Trey’s brain will not be affected. But now, even though Trey’s cognitive tests are not all that different than last year’s, we are one year ahead. And apparently that puts Trey in the grey area. And if I recall from our visits to Dr. Escolar, kids who are in the grey area eventually decline.
One more note before I begin my post: I have been through this before, with Trey’s initial diagnosis and repeatedly since, with each round of cognitive tests, appointments, and surgeries, so I will get through this. Also, if you’re one of those cheery people who doesn’t like to wade into the deep end, you should probably stop here. Because this is what goes through my mind at night, when there are no distractions, when I’m having trouble holding onto hope. This is despair.
Aside from my other 2 children’s lives, I would give anything for Trey’s brain to be okay. To not have progressive brain disease. My life, Ryan’s life. But nothing I can do will change our reality. So how can I go on? The sad reality, after having lived it and watched others live it, is that I don’t have a choice. Unless I ended my own life, I’m going to keep living. And because I have 3 children I would die for, I won’t end my own life. So now I have to figure out how to live. Again. And instead of sleeping at night, that’s what I do. Try to figure out how to live. Because sometimes, I wish I wasn’t here. Or I wish Trey and I weren’t here. That would be easier. But then I love my kids too much to go beyond a fleeting thought of that.
So how to live. Yoga, yes. Think about me and figure out what I want to live for, yes. But what if what I want, all I want, is for my kid to live? Then what? How am I supposed to live while I watch my child die? That’s not even humane. Sounds like the worst type of prolonged torture that exists. And I’m having to entertain that reality as my life. So where do I go from there?
My friend whose son also has Hunter’s told me that she can remember the last time she was happy. It was last summer. She had just graduated from school, her son had just turned one, and she was skipping around her parents’ house. Her son was diagnosed that fall. She told me she doesn’t think she’ll ever skip again…
I want to figure out how to skip again, just so I can take her skipping with me. What kind of life is it if you never want to skip again?
You know who gets me through? Jen, Jamie, Lisa, Carolyn, Marie, Amy, Brooke, Robb. Because they know. They have faced it and know the fear and pain in my heart.
And I honestly don’t know how we get through. Actually I do. Because we don’t have a choice. So we hold onto each other and grasp for straws and try to figure out what the point of all this is. And when one of us is here, where I am now, we lift each other up and hold onto each other and don’t let go until we’ve figured out how to get up and keep living.
Thank you to the moms who are keeping me from drowning. And thank you to Ryan. Who has held me in the middle of the night when I have no idea how I’m going to go on.
