Okay, this blog is all about Ethan. But I'm carving out a little me time here. I guess I'm hoping this will be a bit cathartic.
We've been on a roller coaster ride for 18 months and counting. I've been getting through all sorts of emotions with relative ease and it's probably because Ethan is a really positive distraction from those feelings.
I think most days, I just keep my head above water by focusing on the schedule and keeping Ethan happy. I don't dwell on stuff that I find scary or depressing, because it scares and depresses me. He has so many pressing needs right here in the present that it's a waste to spend much time worrying about the future.
But the fact that he may have apraxia of speech has hit me like a ton of bricks. I don't know much about it, but what I do know scares me out of wanting to learn more. Apraxia is a neurological disorder, which in and of itself is disarming. It's a condition that makes it difficult or impossible to speak. Like autism and many other disorders, there is a wide spectrum of what is possible, from mild to severe. I was hoping that Ethan could be "neuro-typical" (a term borrowed from this blog), even though we have been prepared that might not be the case. CMV is truly heinous.
Why is this apraxia thing suddenly more concerning to me than the fact that his eyes aren't working right and he'll likely need surgery? I guess because it's a corrective surgery and he's already been through major surgery, so I'm not as upset by something that is routine and seen as an outpatient thing. But not being able to talk? Come on. That's heart-breaking.
Mom reminds me that he's gotten through so much already, so he'll get through this. No cerebral palsy, no more torticollis, no more apnea, and hopefully someday, no more acid reflux, and a pair of eyes that look straight ahead.
I'm normally just so grateful and optimistic, but not today.