When I hear you breathing like that it makes me feel like I’m getting the wind knocked out of me over and over again. I can’t go back to sleep when I hear it and then I just lay in bed questioning what I could have done differently. It’s a vicious cycle and it’s not healthy…I know. This morning when I heard the alarming sound of your labored breathing I didn’t jump out of bed like I did last time. Instead I sat up, looked around and questioned if what I was hearing was real. It wasn’t till I laid my head back down that I heard it again, and then again when I turned over. I hear it, I really do. It scares me every single time. It’s goes just as fast as it comes. The moment someone else wakes up, it’s gone.
It’s the sounds that hits the triggers the rewind button in my head and makes me think about what I could have done differently. Why I thought that, that seizure was like every other seizure you’ve ever had. Why I thought it would run its course and then stop like the three that came before it. THREE! Why did the 4th seizure have to be so different!
When you were a baby I joined a handful of groups online based on your diagnosis’s. I read and researched everything about Schizencephaly that was available, which isn’t much, but I remember feeling very alone for a number of reasons. I wasn’t sure if it was postpartum or straight up depression. I told my doctor and we agreed it was more likely depression mixed with anxiety. It was the stories and posts about young children who seemed to be in and out of hospitals and passing on that kept me on edge and made me slightly paranoid, or become a “helicopter” mom, as others would say. At one point your dad told me I needed to stop reading it, but then I became a little braver. I asked one of your doctors why kids with Schizencephaly seem to die young and why the literature online says it’s rare for kids like you to live to experience double digit years. I can still recall that conversation as if it were last week. I relied and believed in that discussion.
The doctor explained that kids with Schizencephaly could have average life spans and that it was not likely Schizencephaly that would end up being the cause of death, but instead something that is might be related to it.
I took those words as a home run. I thought we were safe. I never once thought that when she mentioned a “related” factor that, that could mean epilepsy. Never! That is what I didn’t hear. I’ve know people who have had seizures my entire life. They have great lives and like any other disability, it’s just a part of life. I rolled around believing that as long as I continued to take excellent care of you I would one day see you graduate from high school, send you off to college and watch you live out your dreams.
Why in the world was I so oblivious? ME…of all people!
The sound of your labored breathing takes me back to that seizure, the vomit and those strange hiccups. It’s the noise that makes it hard to sleep, hard to get up and most difficult to explain.
10 weeks and I still feel as empty as I did the first day.
I miss you.