Monday, March 2, 2020
Ushers ... a New Journey
Six months, a drive across the midwest to see one of the best doctors who deals with Ushers, confirmed, my baby has Ushers Syndrome. This is a rare syndrome that affects a very small amount of people out of 100k, and my boy has it. After 10 years of thinking one thing, my son has a true hard diagnosis that'd I'd never imagine.
Tomorrow, Aiden will start learning how to use a white cane. Being the parent I am, I don't know all the answers I probably should, but am just going with what I know to do best next. Yet, I am the parent who needs to know all the answers, yet am still trying to navigate through this new journey, yet still, not knowing if I'm ready for said answers. It still doesn't all make sense to me. I'm so used to being in the know about everything hearing loss, so it makes me feel dumb when it comes to not knowing how to deal with this new journey of my son going blind. It is not fair.
So what's next. I'm trying to find a personal trainer for Aiden. Ushers doesn't only take hearing and sight, it takes their balance. Aiden has Ushers 1B, which is a whole different post. There's so many different posts, but for now, I have to focus on my now almost 12 year old, and how tomorrow he starts his first lesson with the cane. I'm having a much harder time than he is. Again, I just don't get it.
Once again, my son will teach me much more than I could ever teach him. Y'all, this kid is amazeballs.
at 12:15 AM