I wish Joe could talk.
I wish it so much it aches.
Some times he can say "Muh" for Mom, or "luh" for light, or "eh" for egg. He was sitting next to me when I heard him clearly say "Mom" for the first and only time in his life. My eyes lit up and I repeated it back to him and he could only manage "muh" again after that.
He's frustrated, too.
The trouble about being non-verbal is that when things are wrong, it is hard to get someone to understand that something is happening. I worry about this a lot.
Joe always has massive amounts of ear-junk. Orange, brown waxy stuff that piles up in his ears, everyday. So, I clean his ears everyday. This week I found green-ish brown stuff that filled his ear canal and looked shiny. We head straight to the pediatrician. Double ear infection.
I know what this probably means. It (probably) means his ear tubes have fallen out, and it means surgery on his ears, again to put new tubes in. I don't like surgery.
Once, when Joe needed a CT scan, they were not prepared to put him under full anesthesia, so after a few false starts and a lot of waiting around, the full team assembled and Joe was put under. They had me help hold him. I felt him go from fighting like a wild man to completely limp in seconds.
When he woke up, he coughed out a 4" plastic hook used to hold his airway open. Both of us were ready to leave. And that was only a CT scan.
Am I ready for surgery again? No, not at all. But I will get up and call his ENT and make it happen, because that is just what you do. One foot in front of the other, one day at a time.
But, oh, I ache.
Oh, Icie! That's so sad! And so hard. I don't think I've had anything to compare to it - just normal kid frustrations and sicknesses and such. Ethan is looking like he might be developing a lazy eye, and we might need to have him wear a patch for a while or something, but that's really not that big a deal in comparison. You are so awesome for taking dealing with all that stress and worry. We love you! (Also, I know you're probably looking for sympathy, not advice, but have you done any signing with Joe? I can't remember whether I've seen that on your blog or not. We've loved baby signing. It's the awesomest.)
ReplyDeleteBaby signing is pretty awesome! Learning full-blown ASL is a bit daunting...
ReplyDeleteHooray for Pirate Ethan! I hope he's okay.
Things around Joe are stressful, and sometimes I am sad about it, but I think a lot mothers have mother ache for their kids, for lots of different reasons. I wish there were clearer answers and maybe sign posts that I am heading in the right direction!