Scared of the Dark

Bryce is deaf. It's been over a year now. He's making slow progress with his cochlear implant. We love the hope it gives us for him. Bryce has optic atrophy. It's the unknown. We don't know if it will progress or if it will remain unchanged.

A few months ago, he had a follow up and after dilating his eyes, it was determined the optic atrophy has no progressed. We are hopeful this will always be the case.

Still, there are times my heart is pained. I worry for him. Months ago, I took him with me to a signing class. He wanted a drink of water but didn't want to go to the drinking fountain alone. I didn't get it. I followed him into the hallway and realized or had a pretty good guess of why he didn't want to be alone. It was dark on the other side of the drinking fountains. The hallway lights were off. This is the first time I became aware of it. Since then, I've noticed that he won't go down the back hallway or anywhere the lights are not on. Well, he won't go alone. He did this today. He wanted me to go with him. I didn't understand what he wanted and we were watching a movie. I got up and he took my hand to lead me to his room. He wanted his blanket.

We've started a potty chart for him. He loves the color blue. (A great choice if you ask me but I'm a highly biased BYU cougar fan.) The stickers are small but he has to put them close to his face. Even then, I'm not sure he really sees them well. I almost feel like he's asking for blue but relying on me to find it.

It makes my heart heavy when I think on it much so I try not to. I guess I tend to forget but when I had an IEP phone conference today and they read off his label, deaf-blind, it was a stark reminder for me.