Monday, March 2, 2020

Ushers ... a New Journey

So it's been years since I've posted. Too many years. Aiden, my blue eyed baby above, was doing great, everything was right on track. Until the day. Until the day we noticed he was struggling seeing at night. Until the day that OT appointment after OT appointment didn't seem to make a difference. At this point he was in fourth grade, the same grade I taught, the same school I taught in. I watched him closely at recess and saw he wasn't keeping up. I'd been asking all my colleagues for the past three years how he's been. "He does his own thing." "He keeps up." is what I heard so I let it go. Yet in my momma heart, I knew there was something just not right. It took TWO Halloweens for me to realize he was not keeping up and had a difficulty with it. After the second Halloween, and a friend's Halloween birthday party, where my son chose to stay in the light, versus play tag in the dark, that I chose to pursue a neurologist appt. I made an appt with his primary care physician, who made us see his cochlear implant specialist first. From there we had to see a pediatric ophthalmologist. It was here my world came crashing down once again. I wasn't even prepared, nor did I ever think this possibility to be true. He mentioned the word Ushers and that we'd have to get further testing. He saw something I never thought possible for my boy. I knew the word, but at the time that wasn't our world. No way could that be our world. As far as I've always  been told, Aiden has EVA (Enlarged Vestibular Aqueducts) which took his hearing and effected his balance. Ushers?!?! NO!!!

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.

17 comments:

Terri Harding said...

Tammy, I was just looking back at my last blog entry (in 2014!) and thinking SO MUCH has happened, I need to start posting again! And then I ran across your update. I LOVE YOU and YOU ARE AMAZING and AIDEN IS AMAZEBALLS and SKYLAR IS ROCKING HER COCHLEAR IMPLANT. Those are my thoughts for today :-)
Thank you for inspiring me to find time to post again! There is a story inside me that needs to be written. I love reading your posts and emails, and connecting on phone calls. I'm here!
xoxoxoxo Terri

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