Checking in... sorry for being AWOL
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Thread Starter
Join Date: Mar 2011
Location: USA
Posts: 3,095
Checking in... sorry for being AWOL
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 girl not much older than DD10 and a good friend of my kids and the daughter of a woman who was one of the ONLY local friends who's been there for me with all the crap from xAH) 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. Brilliant, compassionate, kind, loving, artist, musician, amazing girl. 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 girl not much older than DD10 and a good friend of my kids and the daughter of a woman who was one of the ONLY local friends who's been there for me with all the crap from xAH) 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. Brilliant, compassionate, kind, loving, artist, musician, amazing girl. 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: Aug 2011
Location: Pa
Posts: 4,872
Hey there, you need ((((hugs))))) right now for you and your daughter. I am so sorry that you are going through all of this right now. I can't even begin to imagine how you and your daughter are feeling right now.
Here for you,
amy
Here for you,
amy
Member
Join Date: Aug 2011
Location: Pa
Posts: 4,872
WTBH, I want you to know, I think I kind of went into shock when I read that. I didn't know what to say to you. I can't imagine the shock you and your daughter are in. Just let us know what kind of support you need.
I know you have to wait for all of the tests results. That's a given. It's just the worrying and all that stuff in between where you are really not exactly sure what is going on.
You have a lot of friends and family here, lean on us. If you need to talk, then talk, if you are worrying, or anxious, do it here.
(((((((((((hugs))))))))))))
amy
I know you have to wait for all of the tests results. That's a given. It's just the worrying and all that stuff in between where you are really not exactly sure what is going on.
You have a lot of friends and family here, lean on us. If you need to talk, then talk, if you are worrying, or anxious, do it here.
(((((((((((hugs))))))))))))
amy
Member
Join Date: May 2010
Location: USA
Posts: 13,560
Oh my goodness. That is terrible. I am so sorry for the loss in your life. I am also so sorry for your DD. Big, strong hugs to you both.
Thank you for updating. Please remember that you are not alone. We are here for you every step of the way!
Thank you for updating. Please remember that you are not alone. We are here for you every step of the way!
Member
Join Date: Jul 2004
Location: Starting over all over again
Posts: 4,426
omg WTBH, that is _huge_. I can't even imagine how incredibly stressed out and worried you must be. We are all here for you.
Don't you worry about updating us or anything like that. Take care of you and your girl _first_ and we will just hang out and wait for you to update us when you happen to get around to it.
... and if anybody on SR give you the slightest bit of attitude you just let me know. SR is supposed to be supportive of you, and that is to be done with kindness and compassion.
Mike
Moderator, SR.
Don't you worry about updating us or anything like that. Take care of you and your girl _first_ and we will just hang out and wait for you to update us when you happen to get around to it.
... and if anybody on SR give you the slightest bit of attitude you just let me know. SR is supposed to be supportive of you, and that is to be done with kindness and compassion.
Mike
Moderator, SR.
Sober since 10th April 2012
Join Date: Apr 2012
Location: Perth, Western Australia
Posts: 6,047
WTBH sending you good wishes and hopes, as well as admiration for holding it all together. Health problems plus the loss of a young friend are hard to bear, but I'm sure your have the strength to move on to happier times. They will come.
Member
Thread Starter
Join Date: Mar 2011
Location: USA
Posts: 3,095
Got a call this am that there is a "shadow" on the last MRI and we have to return to the hospital.
I just fell apart. At work. Trying to compose myself in my office... Not feeling super successful.
DD is at move up day for her transition to middle school today- and I have to go get her from it early and take her for another MRI.
I just fell apart. At work. Trying to compose myself in my office... Not feeling super successful.
DD is at move up day for her transition to middle school today- and I have to go get her from it early and take her for another MRI.
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