It has been awhile. And I'd like to say that is because I haven't needed to write, but I would be lying. I've started a new blog about ten different times since I last posted. But my words come from my heart when I write, and my heart has been jumbled.
The last half of 2015 and all of 2016 just sucked. Looking back, I truly think this period has been the worst of this entire journey. And I don't say this lightly, seeing as I've watched my child die and be brought back to life, I've watched her suffer through drug withdrawal similar to what a heroin user has to endure, I've watched her have to learn to walk, talk, and eat again, I've watched her fight for her life while on life support, I've watched her climb back from the edge multiple times.
But as much as all of that hurt me to watch, hurt me to wonder, hurt me to endure...she didn't know. She was young, she was drugged, she doesn't remember. For several years after the dying episode, which took so many drugs to keep her calm and sedated for 6 more days, she would cry out in her sleep, "Let me wake up! I want to wake up!" But consciously, she remembered nothing, she remembers nothing. However, I can assure you that it is forever etched into my brain, every minute of it.
But now. Now she is 14. She is aware. Of everything that she has endured, of the unfairness of it all, of how different her life is from her peers. Emergency brain surgery, the recovery from hell. And I mean the depths of hell. 37% lung function, spinal fusion with a brain still trying to heal. An infection, a second spinal surgery, IV antibiotics, oral antibiotics for almost a year. And still no improvement in lung function. Constant back pain.
You all know what it is like when you have an infection. You're tired, worn out. It takes all you have for your body to fight the infection. Some of you know what it is like to not be able to breathe well, whether from a lung infection, asthma, etc. You're tired, worn out. It takes all you have for your body to focus on breathing. And some of you know what it is like to live in constant pain (I know this one myself). You're tired, worn out. It takes all you have for your body to function through the pain.
Now. Imagine. All. Three. At. Once. Every single day of your life. Throw in that your brain still needs a lost of rest itself. And still having to live life - go to school, do homework, have a social life. I honestly don't know how she does it. There are days that my pain keeps me on the couch. On a normal day, my body is often so worn out by 5pm that it is hard to even walk to the mailbox or let the pups out. She is often right beside me, but she handles it far better than I ever will.
All the physical stuff aside, there is another huge component that I don't want to be overlooked. The emotional and mental well-being of those affected. I can say this with extreme confidence from the last year a half, from both my perspective and Kennedy's - MEDICAL PTSD IS REAL. For Kennedy, this manifests in needing to sit beside me every night on the couch. She has a hard time when she's home and I'm not, even if others are with her. For a long while, she had a hard time being away from home at all; thankfully her awesome friends and their parents helped get her over this hurdle. Doctor appointments are anxiety-producing because she's just waiting for the next piece of bad news (like the surgery she must have at the end of this month). She doesn't like to talk about any of it, hates reminders about what she's been through recently.
For me, it manifests in different ways. Depression, flashbacks, tears, panic attacks, nightmares. Living through it all was just survival. Thinking back and remembering provides a perspective that isn't always positive. Watching her fight her own PTSD demons breaks my heart. It doesn't help that I lost my four-legged therapist in the middle of all the chaos.
But if anything, we are survivors. We roll out of bed each day and live life. We declared 2017 our year, and although she already has a surgery on the books, we hope that it will be one that points us in the right direction. If nothing else, getting back underwater in February with our scuba angels was nothing but amazing for her. I truly think she finds peace 60 feet down. And the promise of even better diving on the horizon is helping her look ahead, instead of getting stuck on the here and now.
So yes, my heart has been jumbled. Words have been hard. Memories even harder. Life still isn't easy, although we're all hoping that really is light at the end of the tunnel that we're seeing.
