It's been 4 years and yet I was caught off guard on Friday. I would like to say this is rare for me, but for some reason this past week, I have been experiencing all sorts of whacked out crazy sensitivities and emotions. Maybe it is the accumulated exhaustion of participating in this journey over the last 4 years? Maybe it is the fact that I prefer to not deal with a lot of my emotions because I tend to write a blog post about how I am feeling in that moment, press post, and then move on. More often than not that way of living has seemed to work best. But then there are those moments, like Friday where three concepts slammed into me at full force despite the fact that I have dealt with them multiple times over the last 4 years.
It became extremely clear to me on Friday that I am not over Sonzee receiving her CDKL5 diagnosis. So for those of you just starting out, 1 year, 2 years, 3 years, 4 years or even more into hearing the string of characters "CDKL5" it is completely normal if you have yet to accept its fate or if today it is just clicking what it might actually mean. As I sat with Sonzee's epileptologist and she answered the same exact questions I have asked every PEMU stay since 2015, on Friday, it clicked. Even if we gain some sort of control of her seizures, which we all agree she most likely won't ever be seizure free nor will she likely ever be 90%, it won't change her background and it won't change the fact that CDKL5 is the reason she is able to do what she can and not able to be typical.
This led me into the 2nd revelation; the one where it becomes clear that even though I don't speak the words and I don't put much faith into it, somewhere in my soul I still believe there is hope for her, because it is during moments where I feel the wall slam into me at 500 miles per hour that I realize the slamming feeling is because I was obviously holding onto some sort of hope. The hope that maybe one of these PEMU stays it will reveal she does not have an abnormal EEG background. The hope that one of these PEMU stays will reveal she isn't seizing unless we notice and hit the red seizure button. The hope that one of these days she will wake up and be typical.
Which led me to the final revelation that we are never going to fix her. We appreciate who she is, we love her the way she is, but honestly, if you told me a specific amount of money would make her be able to become a typical child, I would pay it plus a tip. I do not know why all these 3 items became clear on Friday. I have heard the answers before, I am sure of it, and I do not know why, but for some reason, it all clicked and since then it has been weighing me down like a ton of bricks. I am having an extremely difficult time comprehending that nothing we do for her will ever make her better. No medication is going to stop her seizures, no medication is going to clear up her background, and no medication is going to fix her...but for some reason knowing this we still cycle through medicine cabinet trying to find the answer....and it's been 4 years.