Recently, our family visited another CI family for some fun, football and relaxation. While we were there, Thomas took a spill on the playground equipment by their home. While a bump on the head doesn't mean a whole lot for most kids, for Thomas it could mean that his hearing in his left ear could totally go away. In the blink of an eye, he could go from a mild to moderately-severe loss (depending upon the frequency level) to a profound loss.
I remember when Thomas was first diagnosed. I had so many fears...and now I find myself in a new place. I'm tired of the worry, the fears and the "what-if" thoughts. We know that his EVA/LVAS is physically worse in his left ear even though it is the one "good" hearing ear he has. We know that his hearing could go away today, tomorrow, ten years down the road or decades from now.
This may be hard for some people to understand, but I think that I'm ready for Thomas to lose all of his hearing. I want Thomas to have consistent hearing levels, even if it means that there is no hearing at all. I LING check him twice a day. With each check, I wonder if he didn't respond to "s-s-s" because he couldn't hear me or because he is a typical almost 2 year old, and ignoring his mom because he wants to not because he can't hear me. I'm mentally prepared for his second cochlear implant surgery, healing and activation. When Thomas grows older, I don't want him to have to worry about his hearing going south. I'd like for it to already be a "done deal" and one that he conquered at a young age.
So, these are the question that keep running through my mind lately...Is it so terrible that I wish for Thomas to lose the remainder of his hearing? Am I a bad mother for wanting something that most parents would think is a horrible incident for any child? Am I being selfish for not wanting the worry anymore? Should I do my best to protect him as long as I can...minimizing falls, no airplane rides, etc?
The truth is that I vacillate between wanting his hearing to go away completely and wanting to keep it as long as we can. I know that it truly isn't up to me. It is in God's hands. However, the control freak in me wants to simply know the exact date, time and location of when his hearing will disappear. Is wanting this information too much to ask? As a mom, I think not.
Ushers ... a New Journey
4 years ago
Hey Kat, I have to say that I feel like one of the "lucky ones" or so to speak, who's EVA child was just "severe-profoundly deaf" at birth, no if, ands, or buts about it. I can't imagine going through the roller coaster of emotions everytime my child would hit his head or fall or get on an airplane ... always waiting and wondering. Then again, on the flip side, I truly wish Aiden didn't need a CI on at least one side to get that natural amplification ... even if it was for a short period of time. I don't blame you one bit though. You're a wonderful mom to Thomas (and his sister) and IF the time comes, I know you'll handle it just like you did the first one and fight for what's right for your precious boy. PS - we need a phone date! : )
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