Wtbh
Member
Join Date: Mar 2011
Location: USA
Posts: 3,095
Hey- have meant to check in with all of you but life sort of got in the way...
Absolutely nothing terrible has happened with xAH, but sadly a lot of terrible has happened with my girls...
My oldest has experienced nearly complete hearing loss, suddenly, inexplicably and we've been at the hospital a lot with there being a lot of testing and exploring to be sure there isn't a tumor- which has not yet been totally ruled out.
A lot of hurry up and wait stuff with testing...
The definites that we know are that there's permanent nerve damage to a nerve that reacts like a reflex in a knee might-- it responds to stimuli or sound and reacts and allows noise to travel into the ear/brain (however the hell hearing works).
The nerve in one side is shot-- totally gone. And it's barely functional in the other side.
So, hearing aides will be a given.
All of this is of course fine, because really, all I care about is knowing that there is not something INTERNAL causing this which testing today hopefully ruled out (waiting on Radiologist to read the MRI scans and get the official verdict is a good exercise is patience).
At quite literally the same time that this has happened, a family friend died suddenly (a teenager) from an undetected brain tumor. She was fine one moment and literally in a coma on life support within 6 hours. Not a single symptom. Rare, horrid fluke. The kind of thing that no one thinks could ever happen. But it does. And it did. And it happened to a girl who spent a lot of time at my home with my own kids over the last many years....
So, my DD and I myself too, can not help but go to worst case scenario considering that she is having all this brain testing done and scanning etc...
So, I have been managing to keep it together, go to work, ignore xAH's antics and function somehow, but staying laser focussed on whatever is in front of me in the moment.
I have thought many times of getting on here and updating you all, but I truly was not sure that I could handle, emotionally, sharing this all and thinking too deeply about it.
Today, interestingly, I fell apart. I just could not hold it all together alone anymore and I fell apart into a puddle of tears at an IEP meeting for my DD because I was trying to explain the testing that is happening and the lack of info I have, and I just could not hold it in...
So, it's good that I logged in here tonight bc clearly I don't do well being an island all of the time and I do need to let it out sometimes it seems.
In all likelihood, all will be ok. She will need hearing aides but that's not death sentence and as hard as it is for an almost middle schooler to be adjusting to all of this, she is keenly aware that her friend lost her life and that losing her hearing is a better outcome than her friend had so she (DD) is unhappy about this as she has every right to be, but her friends death is a perspective shaping event which maybe someday I'll be able to think of as a good thing instead of a horrific tragedy...
So, I wish to be honest, that I could say I have been AWOL due to xAHs craziness...
That would be preferable...
But instead, it's a lot of grief and sadness over here about all of this stuff...
Absolutely nothing terrible has happened with xAH, but sadly a lot of terrible has happened with my girls...
My oldest has experienced nearly complete hearing loss, suddenly, inexplicably and we've been at the hospital a lot with there being a lot of testing and exploring to be sure there isn't a tumor- which has not yet been totally ruled out.
A lot of hurry up and wait stuff with testing...
The definites that we know are that there's permanent nerve damage to a nerve that reacts like a reflex in a knee might-- it responds to stimuli or sound and reacts and allows noise to travel into the ear/brain (however the hell hearing works).
The nerve in one side is shot-- totally gone. And it's barely functional in the other side.
So, hearing aides will be a given.
All of this is of course fine, because really, all I care about is knowing that there is not something INTERNAL causing this which testing today hopefully ruled out (waiting on Radiologist to read the MRI scans and get the official verdict is a good exercise is patience).
At quite literally the same time that this has happened, a family friend died suddenly (a teenager) from an undetected brain tumor. She was fine one moment and literally in a coma on life support within 6 hours. Not a single symptom. Rare, horrid fluke. The kind of thing that no one thinks could ever happen. But it does. And it did. And it happened to a girl who spent a lot of time at my home with my own kids over the last many years....
So, my DD and I myself too, can not help but go to worst case scenario considering that she is having all this brain testing done and scanning etc...
So, I have been managing to keep it together, go to work, ignore xAH's antics and function somehow, but staying laser focussed on whatever is in front of me in the moment.
I have thought many times of getting on here and updating you all, but I truly was not sure that I could handle, emotionally, sharing this all and thinking too deeply about it.
Today, interestingly, I fell apart. I just could not hold it all together alone anymore and I fell apart into a puddle of tears at an IEP meeting for my DD because I was trying to explain the testing that is happening and the lack of info I have, and I just could not hold it in...
So, it's good that I logged in here tonight bc clearly I don't do well being an island all of the time and I do need to let it out sometimes it seems.
In all likelihood, all will be ok. She will need hearing aides but that's not death sentence and as hard as it is for an almost middle schooler to be adjusting to all of this, she is keenly aware that her friend lost her life and that losing her hearing is a better outcome than her friend had so she (DD) is unhappy about this as she has every right to be, but her friends death is a perspective shaping event which maybe someday I'll be able to think of as a good thing instead of a horrific tragedy...
So, I wish to be honest, that I could say I have been AWOL due to xAHs craziness...
That would be preferable...
But instead, it's a lot of grief and sadness over here about all of this stuff...
Member
Join Date: Apr 2010
Location: Alaska
Posts: 2,913
I'm so sorry about all of the sad and hard stuff going on, WTBH. Sending hugs and wishing you continued strength.
My oldest nephew lost his hearing when he was in grade school (he's going on to be a Senior in HS next year). They have no idea why it happened. He had hearing aids for a bit and then the hearing loss got worse so those stopped working well for him. It was scary going through it as his aunt, I can only imagine what it was like for him and his parents.
In Jr High, he got cochlear implants for both ears. He says it was weird learning to hear with the implants, it sounded different, but kind of cool at the same time, a little like R2D2 while they were making adjustments. Both with the hearing aids and the implants, he loves being able to turn off when he's just done listening to someone. And he's always right up front about it: looks you straight in the eye, reaches up and flips them off. He's said a couple times that his ears may not work like everyone else's, but that doesn't mean there aren't things he likes about it. He tends to turn them off when he's doing homework or working something out and needs to focus.
Sending more big, big hugs, WTBH. Glad you've reached out for support and I wish I could offer more than just words on a screen. That's a lot of heavy things going on and really hard to handle on your own. (((((hugs)))))
My oldest nephew lost his hearing when he was in grade school (he's going on to be a Senior in HS next year). They have no idea why it happened. He had hearing aids for a bit and then the hearing loss got worse so those stopped working well for him. It was scary going through it as his aunt, I can only imagine what it was like for him and his parents.
In Jr High, he got cochlear implants for both ears. He says it was weird learning to hear with the implants, it sounded different, but kind of cool at the same time, a little like R2D2 while they were making adjustments. Both with the hearing aids and the implants, he loves being able to turn off when he's just done listening to someone. And he's always right up front about it: looks you straight in the eye, reaches up and flips them off. He's said a couple times that his ears may not work like everyone else's, but that doesn't mean there aren't things he likes about it. He tends to turn them off when he's doing homework or working something out and needs to focus.
Sending more big, big hugs, WTBH. Glad you've reached out for support and I wish I could offer more than just words on a screen. That's a lot of heavy things going on and really hard to handle on your own. (((((hugs)))))
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