Today has been one of those days I would not want to ever repeat. My stress level is absolutely through the roof.
When Emmett wouldn’t respond to us yesterday, that was the longest 45 minutes I’ve experienced in a really long time. When the episode resolved itself, and he was back-for lack of a better word-the fear didn’t resolve.
When we called the doctor and explained what happened, it sounded seizure related. That was something I could process. Don’t get me wrong, I would never wish seizures on any of my kids, ever. At that moment, seizures made sense to everyone involved and it explained the otherwise unexplainable.
It’s not like anyone knew for sure what was happening but it was better to be safe than sorry and with Gavin’s history and current seizure activity, no one wanted to take any chances.
After visiting with the neurologist today, we decided that it likely wasn’t a seizure. What it actually was….well we don’t know.
I know that’s really good news, at least in the rational sense. However, hearing that didn’t provide me with comfort, as one might think.
What I’m going to tell you now is my absolute deepest fear and I rarely ever talk about it. You may have heard me joke about being terrified of the dentist, which I totally am, but that’s not my worst fear. I know that this won’t make sense to many people because they have not experienced what I am about to share but I also know that some of you will know exactly what I’m talking about.
When Gavin was little, he developed typically. He hit his milestones and no one was worried about anything. One day, we put him to bed Gavin and he woke up a complete stranger.
I realize that sounds dramatic and maybe some of you are rolling your eyes, but that what it honestly felt like. It felt that quick and it felt that sudden. I don’t know any other way to describe it. It literally felt like Gavin had died. The child we had known for so long was gone. He was disconnected and mechanical. The light in his eyes had gone out.
The rest of the story doesn’t really matter at this junction. What matters is the absolute, gut wrenching, heartbreaking and otherwise indescribable pain we felt at that the loss. The grief was very, very real, even though he was still physically there with us.
My biggest fear is that Emmett will go down the same road.
When we lost Gavin, he was Emmett‘s age. Not a day goes by that I’m not acutely aware of that. Rational or not, I’m terrified that each day I have with Emmett, could be the last day before the switch gets flipped.
It’s so hard to explain what it’s like to lose a child and yet still have them at the same time. I suppose that’s my cross to bare but I’m not strong enough to go through that again. I can’t even begin to imagine losing my sweet Emmett John in that same way.
When Emmett wouldn’t respond for 45 minutes yesterday, I thought the switch had flipped and I had lost him. It was the longest 45 minutes of my life.
When they thought it was a seizure, I clung to that like a safety blanket. I thought, we can deal with seizures because we still had Emmett and he would still be Emmett. I know how that sounds but when you are facing your worst fear, things change and rationality goes out the window.
When we met with the neurologist today and it turned out that what happened to Emmett likely was not seizure related, it was bittersweet.
We still don’t know what happened to him yesterday. With the backwards trend Emmett has been taking lately, I’m terrified that something is wrong. Emmett has been slipping into old behaviors a lot lately. Maybe I sound crazy but it’s my reality and I suppose that’s all that matters.
Every night before I go to bed, I always ask for just one more day. I know that I sound paranoid and I guess it would be fair to say I am, but I’m a father that had his oldest son taken away by a regressive form of Autism. Once you experience that, your due a little paranoia… On the other side of the coin, it also teaches you to never take anything for granted because you never know when what matters most, could be taken away.
**Thanks for reading**
-Lost and Tired
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Posted from WordPress for Android so please forgive any typos as auto-correct and I don’t see eye to eye. 🙂