Re: A bad day

[Guest guest]

Big hugs for you!!!!

You're feeling this way because, I'm guessing, you're starting to greive

his loss. Yes it's great to finally have a definitive answer about his loss,

but at the same time it's not what you really want to hear.

Things could be worse, but that's no reason to not feel like you do. I

know that your audi's have mentioned that their hearing loss may be progressive,

and that it seems that you may have proof of that, but their loss may not

progress to being completly deaf. It may only go to severe, it may go to

somewhere in profound, but it may not. No one knows what the future holds. I

always like to prepare myself for the worse, but hope for the best.

About dance class. I've watched that same thing happen in 's class

and I've always thought " there is , doing her own thing...I bet she never

heard the directions " . and yes, usually no one corrects her. What I've come to

learn is that there are other kids doing the same things that can hear. If

isn't that interested in what you have to say....she isn't going to pay

attention unless you make her. Last year and the year before that, her dance

class had 16-20 kids in it. This year, her class has 5 kids. I can tell you I

see a big difference. Not because she can hear any better, but the teacher has

time for more individual attention, which in turn makes pay attention a

little more. Of course it does come with a price. likes being the

center of attention and in a small class she sure does try to get away with it.

I'm going to guess you feel isolated because it sounds like you aren't getting

the support you need at home. I too am married to a " what are you going to do

about it " man (his favorite phase). It's hard when all I want to do is talk

about a situation regarding and he seems to not care. I know that he

does, but he really has no idea how to " fix " things that involve her so he just

exits the situation. It's frustrating as hell. I'm lucky that I have a friend

I can call who helps me sort out things. And when she doesn't understand it, I

come here ;o)

Don't be afraid to post your feelings. If anything I think they would help

new parents. It's normal to have bad days and feel like you do. But if none of

us ever talk about it, then you never know that everyone else has them. This

may be a poor compairson, but it makes the point. Shortly after my father died,

I dealt with a bout of depression that needed meds. I never spoke about this to

my family until a few years later. When I did, I discovered that we all had

gone throught the same thing, just never told each other....I guess out of

shame?. The sad thing is that if we had talked about it, maybe we could have

all helped each other, instead of suffering in silence. So what I'm saying is

that if the parents who have already been here for a few years are having bad

days, it might be easier for the newer parents to deal with those bad days

because it's something we all go through.

Gosh I hope that makes sense. My " dear " husband keeps talking to me while I'm

trying to type this and I've been up far too long today getting things ready for

's birthday. I also hope that I don't offened anyone. I'm always afraid

that I'm going to word something the wrong way. Gee, can you tell I'm over

tired...I'm always quite chatty when I'm over tired.

Debbie, mom to , 7 today, moderate SNHL and , 3 hearing

saraandchadd saraandchadd@...> wrote:

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In a message dated 6/17/2006 11:56:03 P.M. Eastern Daylight Time,

saraandchadd@... writes:

And who can blame them? I mean - seriously - I don't even feel like door

housework somedays!!! I can't even imagine having to work so hard just to hear.

Maybe I shouldn't be posting this - I don't want to scare the new parents

off. But I'm just feeling down about it. ...

I just feel like this is it. The end of something and the begining of

something completely different. It just feels so final for some reason. At

least

through all the testing I still had hope - that it wasn't both kids. That it

wasn't us. That it was just some freak thing that happened to Hannah. And now I

don't have that wondering. This is it. ...

And I am scared out of my mind about the future....

And to make it even more frustrating is that my husband has his same

old " roll with the punches " attitude. I swear NOTHING gets to this

guy - and here I am in tears. Why does it seem like it has changed

nothing for him yet I feel like it has changed my entire life?

Now you're not going to believe me, but I could have written this email

years ago with only slight changes. And I doubt you're going to scare off new

parents. What you're doing is putting words to some their own thoughts and

letting them know that they're not alone or crazy.

All these emotions and fears and worries are just plain normal. I refer to

it as the roller-coaster ride I was on for the first year or two after Ian's

diagnosis. After a little while, everything seemed to level out, but I could

still be reduced to tears by the stupidest of things. The grief and anger and

worries does even out and pass after a while, but it takes its own time. You

need to give yourself permission to feel all of it and know that it is ALL

valid.

It feels final because it is, something is ending and something new is

beginning. A transition point. Right now it feels like a really BIG something

and

very significant. Remember that you're losing something too, it's not just

your kids. For me it was an idea of how my son should be -- of how all kids

should be. It felt to me like I had dreams dying. You're grieving a loss, so be

kind and patient with yourself -- and your hubby.

If you're like me, you're watching your kids and wondering about what

they're going to lose out on. That's incredibly normal. And if you're like me,

when

you see those things, they're going to hit you like a knife. For instance,

Ian had perfect pitch and as his hearing deteriorated, I watched that gift

disappear. Perhaps that's why he can still sing as well as he does, who knows.

But he won't sing in the chorus or church choir, he's too shy to hit the notes

off-key and work to find them. So he sings only at home, with great gusto.

Sometimes it is so off-key it is painful, and other times -- I swear my brother

is singing in the other room.

Again, being scared about the future is normal too. I use to stand in Ian's

doorway and cry as I watched him sleep, wondering just what was going to

become of our little guy. I knew in my head that he was going to be okay -- I

knew

we'd make sure of that. But my heart was just breaking because I knew it was

going to be SO hard for him. That passed with time, as I got to see him

functioning successfully and realizing that he was still the same Ian.

Now, as for your husband, if he is anything like mine, the reason he is

being so cavalier about all this is because you're not. Mine was trying to be

my

rock and take care of his end of things while I was the more emotional one.

We have our standard roles even if we don't recognize them and we fall into

them in times of extreme stress. He really was just being himself -- the

strong silent type which really is his personality. His quiet, self-assured

personality is what drew me to him, and it was exactly what drove me nuts for a

while.

We grieve differently. It's as simple as that. It looked to me like he was

in denial, that he wasn't taking it at all seriously. He was, just in his own

way. I tend to focus in on the small details and he always takes the broader

picture view of like. There were times when I threatened to beat him with his

" broader picture " if only it was a real picture frame. (grin) We're just

plain different.

If you want proof that my hubby gets it, come on over and we'll rent Mr.

Holland's Opus. You'll see my big old bear of a husband cry at the kitchen

scene

where the wife screams that all she wants is to be able to talk with their

deaf son. A small scene in a long movie, but it will reduce my furry beastie to

tears every time.

I am sure that your husband gets it, just like mine got it. Remember that he

is refocusing his dreams and expectations, just like you are doing. I know it

was hard for my husband, because there's that cliche about a man and his son

-- except it's very real, that bond, those expectations. There were so many

things he'd hoped to share with his son and part of his adjustment was

realizing that he'd might have to let some go and make new dreams.

I can say all this now, because it's been 8 years. But at the time, I was

incredibly frustrated and angry with the man. I had no idea what he was going

through and from his demeanor, it looked like every day was just like the last

for him. It wasn't, but I was too caught up in my grief process to recognize

his.

It was hard on us both in very different ways. Try and remember that there

are reasons you chose each other in the first place, and those still exist. If

this anger and frustration don't pass in a reasonable amount of time, I

recommend a little counseling. We've made it to the 24 year mark with a little

help at the right times. And like I said, the very traits that made me adore him

in the first place, were the ones that had me contemplating murder later on

(grin). You're both adjusting, so give yourselves time to get there. You'll

do it at different speeds and in different ways, but you'll both get there.

Best -- Jill

(who sounds like a silly cheerleader or like she swallowed a self-help book,

LOL)

[Guest guest]

In a message dated 6/17/2006 11:56:03 P.M. Eastern Daylight Time,

saraandchadd@... writes:

And who can blame them? I mean - seriously - I don't even feel like door

housework somedays!!! I can't even imagine having to work so hard just to hear.

Maybe I shouldn't be posting this - I don't want to scare the new parents

off. But I'm just feeling down about it. ...

I just feel like this is it. The end of something and the begining of

something completely different. It just feels so final for some reason. At

least

through all the testing I still had hope - that it wasn't both kids. That it

wasn't us. That it was just some freak thing that happened to Hannah. And now I

don't have that wondering. This is it. ...

And I am scared out of my mind about the future....

And to make it even more frustrating is that my husband has his same

old " roll with the punches " attitude. I swear NOTHING gets to this

guy - and here I am in tears. Why does it seem like it has changed

nothing for him yet I feel like it has changed my entire life?

Now you're not going to believe me, but I could have written this email

years ago with only slight changes. And I doubt you're going to scare off new

parents. What you're doing is putting words to some their own thoughts and

letting them know that they're not alone or crazy.

All these emotions and fears and worries are just plain normal. I refer to

it as the roller-coaster ride I was on for the first year or two after Ian's

diagnosis. After a little while, everything seemed to level out, but I could

still be reduced to tears by the stupidest of things. The grief and anger and

worries does even out and pass after a while, but it takes its own time. You

need to give yourself permission to feel all of it and know that it is ALL

valid.

It feels final because it is, something is ending and something new is

beginning. A transition point. Right now it feels like a really BIG something

and

very significant. Remember that you're losing something too, it's not just

your kids. For me it was an idea of how my son should be -- of how all kids

should be. It felt to me like I had dreams dying. You're grieving a loss, so be

kind and patient with yourself -- and your hubby.

If you're like me, you're watching your kids and wondering about what

they're going to lose out on. That's incredibly normal. And if you're like me,

when

you see those things, they're going to hit you like a knife. For instance,

Ian had perfect pitch and as his hearing deteriorated, I watched that gift

disappear. Perhaps that's why he can still sing as well as he does, who knows.

But he won't sing in the chorus or church choir, he's too shy to hit the notes

off-key and work to find them. So he sings only at home, with great gusto.

Sometimes it is so off-key it is painful, and other times -- I swear my brother

is singing in the other room.

Again, being scared about the future is normal too. I use to stand in Ian's

doorway and cry as I watched him sleep, wondering just what was going to

become of our little guy. I knew in my head that he was going to be okay -- I

knew

we'd make sure of that. But my heart was just breaking because I knew it was

going to be SO hard for him. That passed with time, as I got to see him

functioning successfully and realizing that he was still the same Ian.

Now, as for your husband, if he is anything like mine, the reason he is

being so cavalier about all this is because you're not. Mine was trying to be

my

rock and take care of his end of things while I was the more emotional one.

We have our standard roles even if we don't recognize them and we fall into

them in times of extreme stress. He really was just being himself -- the

strong silent type which really is his personality. His quiet, self-assured

personality is what drew me to him, and it was exactly what drove me nuts for a

while.

We grieve differently. It's as simple as that. It looked to me like he was

in denial, that he wasn't taking it at all seriously. He was, just in his own

way. I tend to focus in on the small details and he always takes the broader

picture view of like. There were times when I threatened to beat him with his

" broader picture " if only it was a real picture frame. (grin) We're just

plain different.

If you want proof that my hubby gets it, come on over and we'll rent Mr.

Holland's Opus. You'll see my big old bear of a husband cry at the kitchen

scene

where the wife screams that all she wants is to be able to talk with their

deaf son. A small scene in a long movie, but it will reduce my furry beastie to

tears every time.

I am sure that your husband gets it, just like mine got it. Remember that he

is refocusing his dreams and expectations, just like you are doing. I know it

was hard for my husband, because there's that cliche about a man and his son

-- except it's very real, that bond, those expectations. There were so many

things he'd hoped to share with his son and part of his adjustment was

realizing that he'd might have to let some go and make new dreams.

I can say all this now, because it's been 8 years. But at the time, I was

incredibly frustrated and angry with the man. I had no idea what he was going

through and from his demeanor, it looked like every day was just like the last

for him. It wasn't, but I was too caught up in my grief process to recognize

his.

It was hard on us both in very different ways. Try and remember that there

are reasons you chose each other in the first place, and those still exist. If

this anger and frustration don't pass in a reasonable amount of time, I

recommend a little counseling. We've made it to the 24 year mark with a little

help at the right times. And like I said, the very traits that made me adore him

in the first place, were the ones that had me contemplating murder later on

(grin). You're both adjusting, so give yourselves time to get there. You'll

do it at different speeds and in different ways, but you'll both get there.

Best -- Jill

(who sounds like a silly cheerleader or like she swallowed a self-help book,

LOL)

[Guest guest]

In a message dated 6/17/2006 11:56:03 P.M. Eastern Daylight Time,

saraandchadd@... writes:

And who can blame them? I mean - seriously - I don't even feel like door

housework somedays!!! I can't even imagine having to work so hard just to hear.

Maybe I shouldn't be posting this - I don't want to scare the new parents

off. But I'm just feeling down about it. ...

I just feel like this is it. The end of something and the begining of

something completely different. It just feels so final for some reason. At

least

through all the testing I still had hope - that it wasn't both kids. That it

wasn't us. That it was just some freak thing that happened to Hannah. And now I

don't have that wondering. This is it. ...

And I am scared out of my mind about the future....

And to make it even more frustrating is that my husband has his same

old " roll with the punches " attitude. I swear NOTHING gets to this

guy - and here I am in tears. Why does it seem like it has changed

nothing for him yet I feel like it has changed my entire life?

Now you're not going to believe me, but I could have written this email

years ago with only slight changes. And I doubt you're going to scare off new

parents. What you're doing is putting words to some their own thoughts and

letting them know that they're not alone or crazy.

All these emotions and fears and worries are just plain normal. I refer to

it as the roller-coaster ride I was on for the first year or two after Ian's

diagnosis. After a little while, everything seemed to level out, but I could

still be reduced to tears by the stupidest of things. The grief and anger and

worries does even out and pass after a while, but it takes its own time. You

need to give yourself permission to feel all of it and know that it is ALL

valid.

It feels final because it is, something is ending and something new is

beginning. A transition point. Right now it feels like a really BIG something

and

very significant. Remember that you're losing something too, it's not just

your kids. For me it was an idea of how my son should be -- of how all kids

should be. It felt to me like I had dreams dying. You're grieving a loss, so be

kind and patient with yourself -- and your hubby.

If you're like me, you're watching your kids and wondering about what

they're going to lose out on. That's incredibly normal. And if you're like me,

when

you see those things, they're going to hit you like a knife. For instance,

Ian had perfect pitch and as his hearing deteriorated, I watched that gift

disappear. Perhaps that's why he can still sing as well as he does, who knows.

But he won't sing in the chorus or church choir, he's too shy to hit the notes

off-key and work to find them. So he sings only at home, with great gusto.

Sometimes it is so off-key it is painful, and other times -- I swear my brother

is singing in the other room.

Again, being scared about the future is normal too. I use to stand in Ian's

doorway and cry as I watched him sleep, wondering just what was going to

become of our little guy. I knew in my head that he was going to be okay -- I

knew

we'd make sure of that. But my heart was just breaking because I knew it was

going to be SO hard for him. That passed with time, as I got to see him

functioning successfully and realizing that he was still the same Ian.

Now, as for your husband, if he is anything like mine, the reason he is

being so cavalier about all this is because you're not. Mine was trying to be

my

rock and take care of his end of things while I was the more emotional one.

We have our standard roles even if we don't recognize them and we fall into

them in times of extreme stress. He really was just being himself -- the

strong silent type which really is his personality. His quiet, self-assured

personality is what drew me to him, and it was exactly what drove me nuts for a

while.

We grieve differently. It's as simple as that. It looked to me like he was

in denial, that he wasn't taking it at all seriously. He was, just in his own

way. I tend to focus in on the small details and he always takes the broader

picture view of like. There were times when I threatened to beat him with his

" broader picture " if only it was a real picture frame. (grin) We're just

plain different.

If you want proof that my hubby gets it, come on over and we'll rent Mr.

Holland's Opus. You'll see my big old bear of a husband cry at the kitchen

scene

where the wife screams that all she wants is to be able to talk with their

deaf son. A small scene in a long movie, but it will reduce my furry beastie to

tears every time.

I am sure that your husband gets it, just like mine got it. Remember that he

is refocusing his dreams and expectations, just like you are doing. I know it

was hard for my husband, because there's that cliche about a man and his son

-- except it's very real, that bond, those expectations. There were so many

things he'd hoped to share with his son and part of his adjustment was

realizing that he'd might have to let some go and make new dreams.

I can say all this now, because it's been 8 years. But at the time, I was

incredibly frustrated and angry with the man. I had no idea what he was going

through and from his demeanor, it looked like every day was just like the last

for him. It wasn't, but I was too caught up in my grief process to recognize

his.

It was hard on us both in very different ways. Try and remember that there

are reasons you chose each other in the first place, and those still exist. If

this anger and frustration don't pass in a reasonable amount of time, I

recommend a little counseling. We've made it to the 24 year mark with a little

help at the right times. And like I said, the very traits that made me adore him

in the first place, were the ones that had me contemplating murder later on

(grin). You're both adjusting, so give yourselves time to get there. You'll

do it at different speeds and in different ways, but you'll both get there.

Best -- Jill

(who sounds like a silly cheerleader or like she swallowed a self-help book,

LOL)

[Guest guest]

i understand completely how you feel and i'll be praying for ya'.

things will get back to normal for you (a new normal). TRY not to

worry as much cuz you know . . . worrying doesn't help a thing (quoting

MY hubby here to make ya chuckle) = )

>

> i don't know why I'm feeling this way today about the whole

> situation. I know that things could be so much worse and I feel

> guilty for feeling down about their hearing loss.

>

> I hate the fact that what hearing they do have will most probably be

> gone at some point in their life. That something they have been

> given and will use will be taken away from them. Maybe we're lucky

> to know that this will most probably happen - maybe I can teach them

> to appreciate the sounds of life - the birds and cars, the ocean,

> telling them I love them - before it is all gone.

>

> I feel cheated out of some things in life. We went to my daughters

> dance class today and it was painfully obvious that she just

> couldn't hear the instructor. And to make matters worse, the

> instructor wasn't even correcting her. I made me feel like she was

> thinking " oh well - she can't hear me anyway - there is no point " .

> It broke my heart. For the first time it made me see that there ARE

> difficulties related to their hearing loss. I don't say limitations

> because I don't ever want them to feel that they are limited - but

> it hurts to feel that some things might be out of their grasp simply

> because they may not want to put the extra effort in to it.

>

> And who can blame them? I mean - seriously - I don't even feel like

> door housework somedays!!! I can't even imagine having to work so

> hard just to hear. Maybe I shouldn't be posting this - I don't want

> to scare the new parents off. But I'm just feeling down about it.

>

> There was an article in this weeks Time magazine with some reporter

> from CNN (why can't I remember his name right now! And he's my

> favorite reporter!) about what it was like growing up with a famous

> mother. He said something along the lines of " the best thing about

> my childhood was having to sit around the dinner table with my

> family. I realized that they were just as unhappy as everyone

> else. " So I know that " everyone " has a bump in the road too. So

> why do I feel so isolated sometimes?

>

> We go Monday to get Jakes hearing aids. I've already seen them, but

> jeez I'm afraid. I just feel like this is it. The end of something

> and the begining of something completely different. It just feels

> so final for some reason. At least through all the testing I still

> had hope - that it wasn't both kids. That it wasn't us. That it

> was just some freak thing that happened to Hannah. And now I don't

> have that wondering. This is it.

>

> And I am scared out of my mind about the future. I know it looks

> bright for them - new technology, futhur aiding if they need - just

> more things for them.

>

> And to make it even more frustrating is that my husband has his same

> old " roll with the punches " attitude. I swear NOTHING gets to this

> guy - and here I am in tears. Why does it seem like it has changed

> nothing for him yet I feel like it has changed my entire life?

>

> ...........I dont know - just writing it all out.

>

>

>

--

Robin Tomlinson

thetomlinsons@...

[Guest guest]

> i don't know why I'm feeling this way today about the whole

> situation. I know that things could be so much worse and I feel

> guilty for feeling down about their hearing loss.

Sara, You are feeling the exact same way I do. Some days you will

accept it better than others. I have ups and down.

> I hate the fact that what hearing they do have will most probably be

> gone at some point in their life. That something they have been

> given and will use will be taken away from them. Maybe we're lucky

> to know that this will most probably happen - maybe I can teach them

> to appreciate the sounds of life - the birds and cars, the ocean,

> telling them I love them - before it is all gone.

I think we love our kids so much that we want all to be well with them

and it just isnt fair they have to deal with a hearing loss. So often

I have thought ... I wish I could take it all away for them and deal

with it myself instead of them having to. Reading the above paragraph

brings tears to my eyes. I just want to go outside, hold my son and

listen to the sounds. But of course, he is 10 and busy playing and

would want no part of that.

> I feel cheated out of some things in life. We went to my daughters

> dance class today and it was painfully obvious that she just

> couldn't hear the instructor. And to make matters worse, the

> instructor wasn't even correcting her. I made me feel like she was

> thinking " oh well - she can't hear me anyway - there is no point " .

> It broke my heart. For the first time it made me see that there ARE

> difficulties related to their hearing loss. I don't say limitations

> because I don't ever want them to feel that they are limited - but

> it hurts to feel that some things might be out of their grasp simply

> because they may not want to put the extra effort in to it.

I have felt that way often. plays soccer and basketball and

just last week was in basketball camp. Something happened to his

hearing aids (moisture got them I believe) so he didnt have them

during camp. On the first day he did and he seemed so active and

interested in listening. After that when he didnt have them, I could

tell he was just tuning out the world. And, I cant blame him. It has

to frustrate him, although he seems to take it all in stride. Me on

the other hand, sitting in the stands with tears in my eyes for him.

> And who can blame them? I mean - seriously - I don't even feel like

> door housework somedays!!! I can't even imagine having to work so

> hard just to hear. Maybe I shouldn't be posting this - I don't want

> to scare the new parents off. But I'm just feeling down about it.

I dont think you will scare off the new parents. If anything, I think

this will help them that they arent the only ones having the feelings

you are having. We all do. Some deal with it better than others.

> There was an article in this weeks Time magazine with some reporter

> from CNN (why can't I remember his name right now! And he's my

> favorite reporter!) about what it was like growing up with a famous

> mother. He said something along the lines of " the best thing about

> my childhood was having to sit around the dinner table with my

> family. I realized that they were just as unhappy as everyone

> else. " So I know that " everyone " has a bump in the road too. So

> why do I feel so isolated sometimes?

>

> We go Monday to get Jakes hearing aids. I've already seen them, but

> jeez I'm afraid. I just feel like this is it. The end of something

> and the begining of something completely different. It just feels

> so final for some reason. At least through all the testing I still

> had hope - that it wasn't both kids. That it wasn't us. That it

> was just some freak thing that happened to Hannah. And now I don't

> have that wondering. This is it.

Im somewhat new on this board and I dont know how old Jake is but I

felt the same way when we were picking up s hearing aids. But I

also remember when he put them on and our Audiologist told us to walk

around down the hall and outside a bit to see how he done with them.

As soon as we walked out of the office and down the hall he started

saying, " Mom, your shoes are so loud " . I had flip-flops on. I asked

him if he had never heard that before and he said no. Then he started

talking about hearing the air conditioner running...something we hear

daily but take for granted and ignore. He was smiling from ear to ear

the whole time. Me...again with tears in my eyes...was happy for him

but at the same time, still sad inside. The smile and look on his

face though is something I will never forget.

> And I am scared out of my mind about the future. I know it looks

> bright for them - new technology, futhur aiding if they need - just

> more things for them.

> And to make it even more frustrating is that my husband has his same

> old " roll with the punches " attitude. I swear NOTHING gets to this

> guy - and here I am in tears. Why does it seem like it has changed

> nothing for him yet I feel like it has changed my entire life?

My hubby is the same way. He says there is no point in worrying about

it daily and bringing yourself down because there isnt anything we can

do about it. We just accept it, do what we can for him and go on.

But it is so hard. It is in my thoughts constantly. Like I said

before, some days are better than others. I try to tell myself to

just accept it, that things could be worse. There are much more

things out there that could be wrong. Far worse than a hearing loss.

But I still wonder...why him ???? I also have a 5 year old that is

EXTREMELY allergic to peanuts. I never knew how many products had

peanut warnings until I began to look. When I am not thinking about

, my 10 year old, I am thinking about Chad. What happens when he

starts dating and kisses a girl that has just ate a Snickers? Im not

real good at handling things. I guess I am somewhat of a worry-wart.

So I have to wonder why Ive been dealt this hand. Ya know?

> ...........I dont know - just writing it all out.

Sometimes it just helps to write it (type it). Ive always heard that

keeping a journal is good to help clear the mind. In a way, venting

on here is the same.

Tammy

[Guest guest]

> i don't know why I'm feeling this way today about the whole

> situation. I know that things could be so much worse and I feel

> guilty for feeling down about their hearing loss.

Sara, You are feeling the exact same way I do. Some days you will

accept it better than others. I have ups and down.

> I hate the fact that what hearing they do have will most probably be

> gone at some point in their life. That something they have been

> given and will use will be taken away from them. Maybe we're lucky

> to know that this will most probably happen - maybe I can teach them

> to appreciate the sounds of life - the birds and cars, the ocean,

> telling them I love them - before it is all gone.

I think we love our kids so much that we want all to be well with them

and it just isnt fair they have to deal with a hearing loss. So often

I have thought ... I wish I could take it all away for them and deal

with it myself instead of them having to. Reading the above paragraph

brings tears to my eyes. I just want to go outside, hold my son and

listen to the sounds. But of course, he is 10 and busy playing and

would want no part of that.

> I feel cheated out of some things in life. We went to my daughters

> dance class today and it was painfully obvious that she just

> couldn't hear the instructor. And to make matters worse, the

> instructor wasn't even correcting her. I made me feel like she was

> thinking " oh well - she can't hear me anyway - there is no point " .

> It broke my heart. For the first time it made me see that there ARE

> difficulties related to their hearing loss. I don't say limitations

> because I don't ever want them to feel that they are limited - but

> it hurts to feel that some things might be out of their grasp simply

> because they may not want to put the extra effort in to it.

I have felt that way often. plays soccer and basketball and

just last week was in basketball camp. Something happened to his

hearing aids (moisture got them I believe) so he didnt have them

during camp. On the first day he did and he seemed so active and

interested in listening. After that when he didnt have them, I could

tell he was just tuning out the world. And, I cant blame him. It has

to frustrate him, although he seems to take it all in stride. Me on

the other hand, sitting in the stands with tears in my eyes for him.

> And who can blame them? I mean - seriously - I don't even feel like

> door housework somedays!!! I can't even imagine having to work so

> hard just to hear. Maybe I shouldn't be posting this - I don't want

> to scare the new parents off. But I'm just feeling down about it.

I dont think you will scare off the new parents. If anything, I think

this will help them that they arent the only ones having the feelings

you are having. We all do. Some deal with it better than others.

> There was an article in this weeks Time magazine with some reporter

> from CNN (why can't I remember his name right now! And he's my

> favorite reporter!) about what it was like growing up with a famous

> mother. He said something along the lines of " the best thing about

> my childhood was having to sit around the dinner table with my

> family. I realized that they were just as unhappy as everyone

> else. " So I know that " everyone " has a bump in the road too. So

> why do I feel so isolated sometimes?

>

> We go Monday to get Jakes hearing aids. I've already seen them, but

> jeez I'm afraid. I just feel like this is it. The end of something

> and the begining of something completely different. It just feels

> so final for some reason. At least through all the testing I still

> had hope - that it wasn't both kids. That it wasn't us. That it

> was just some freak thing that happened to Hannah. And now I don't

> have that wondering. This is it.

Im somewhat new on this board and I dont know how old Jake is but I

felt the same way when we were picking up s hearing aids. But I

also remember when he put them on and our Audiologist told us to walk

around down the hall and outside a bit to see how he done with them.

As soon as we walked out of the office and down the hall he started

saying, " Mom, your shoes are so loud " . I had flip-flops on. I asked

him if he had never heard that before and he said no. Then he started

talking about hearing the air conditioner running...something we hear

daily but take for granted and ignore. He was smiling from ear to ear

the whole time. Me...again with tears in my eyes...was happy for him

but at the same time, still sad inside. The smile and look on his

face though is something I will never forget.

> And I am scared out of my mind about the future. I know it looks

> bright for them - new technology, futhur aiding if they need - just

> more things for them.

> And to make it even more frustrating is that my husband has his same

> old " roll with the punches " attitude. I swear NOTHING gets to this

> guy - and here I am in tears. Why does it seem like it has changed

> nothing for him yet I feel like it has changed my entire life?

My hubby is the same way. He says there is no point in worrying about

it daily and bringing yourself down because there isnt anything we can

do about it. We just accept it, do what we can for him and go on.

But it is so hard. It is in my thoughts constantly. Like I said

before, some days are better than others. I try to tell myself to

just accept it, that things could be worse. There are much more

things out there that could be wrong. Far worse than a hearing loss.

But I still wonder...why him ???? I also have a 5 year old that is

EXTREMELY allergic to peanuts. I never knew how many products had

peanut warnings until I began to look. When I am not thinking about

, my 10 year old, I am thinking about Chad. What happens when he

starts dating and kisses a girl that has just ate a Snickers? Im not

real good at handling things. I guess I am somewhat of a worry-wart.

So I have to wonder why Ive been dealt this hand. Ya know?

> ...........I dont know - just writing it all out.

Sometimes it just helps to write it (type it). Ive always heard that

keeping a journal is good to help clear the mind. In a way, venting

on here is the same.

Tammy

[Guest guest]

> i don't know why I'm feeling this way today about the whole

> situation. I know that things could be so much worse and I feel

> guilty for feeling down about their hearing loss.

Sara, You are feeling the exact same way I do. Some days you will

accept it better than others. I have ups and down.

> I hate the fact that what hearing they do have will most probably be

> gone at some point in their life. That something they have been

> given and will use will be taken away from them. Maybe we're lucky

> to know that this will most probably happen - maybe I can teach them

> to appreciate the sounds of life - the birds and cars, the ocean,

> telling them I love them - before it is all gone.

I think we love our kids so much that we want all to be well with them

and it just isnt fair they have to deal with a hearing loss. So often

I have thought ... I wish I could take it all away for them and deal

with it myself instead of them having to. Reading the above paragraph

brings tears to my eyes. I just want to go outside, hold my son and

listen to the sounds. But of course, he is 10 and busy playing and

would want no part of that.

> I feel cheated out of some things in life. We went to my daughters

> dance class today and it was painfully obvious that she just

> couldn't hear the instructor. And to make matters worse, the

> instructor wasn't even correcting her. I made me feel like she was

> thinking " oh well - she can't hear me anyway - there is no point " .

> It broke my heart. For the first time it made me see that there ARE

> difficulties related to their hearing loss. I don't say limitations

> because I don't ever want them to feel that they are limited - but

> it hurts to feel that some things might be out of their grasp simply

> because they may not want to put the extra effort in to it.

I have felt that way often. plays soccer and basketball and

just last week was in basketball camp. Something happened to his

hearing aids (moisture got them I believe) so he didnt have them

during camp. On the first day he did and he seemed so active and

interested in listening. After that when he didnt have them, I could

tell he was just tuning out the world. And, I cant blame him. It has

to frustrate him, although he seems to take it all in stride. Me on

the other hand, sitting in the stands with tears in my eyes for him.

> And who can blame them? I mean - seriously - I don't even feel like

> door housework somedays!!! I can't even imagine having to work so

> hard just to hear. Maybe I shouldn't be posting this - I don't want

> to scare the new parents off. But I'm just feeling down about it.

I dont think you will scare off the new parents. If anything, I think

this will help them that they arent the only ones having the feelings

you are having. We all do. Some deal with it better than others.

> There was an article in this weeks Time magazine with some reporter

> from CNN (why can't I remember his name right now! And he's my

> favorite reporter!) about what it was like growing up with a famous

> mother. He said something along the lines of " the best thing about

> my childhood was having to sit around the dinner table with my

> family. I realized that they were just as unhappy as everyone

> else. " So I know that " everyone " has a bump in the road too. So

> why do I feel so isolated sometimes?

>

> We go Monday to get Jakes hearing aids. I've already seen them, but

> jeez I'm afraid. I just feel like this is it. The end of something

> and the begining of something completely different. It just feels

> so final for some reason. At least through all the testing I still

> had hope - that it wasn't both kids. That it wasn't us. That it

> was just some freak thing that happened to Hannah. And now I don't

> have that wondering. This is it.

Im somewhat new on this board and I dont know how old Jake is but I

felt the same way when we were picking up s hearing aids. But I

also remember when he put them on and our Audiologist told us to walk

around down the hall and outside a bit to see how he done with them.

As soon as we walked out of the office and down the hall he started

saying, " Mom, your shoes are so loud " . I had flip-flops on. I asked

him if he had never heard that before and he said no. Then he started

talking about hearing the air conditioner running...something we hear

daily but take for granted and ignore. He was smiling from ear to ear

the whole time. Me...again with tears in my eyes...was happy for him

but at the same time, still sad inside. The smile and look on his

face though is something I will never forget.

> And I am scared out of my mind about the future. I know it looks

> bright for them - new technology, futhur aiding if they need - just

> more things for them.

> And to make it even more frustrating is that my husband has his same

> old " roll with the punches " attitude. I swear NOTHING gets to this

> guy - and here I am in tears. Why does it seem like it has changed

> nothing for him yet I feel like it has changed my entire life?

My hubby is the same way. He says there is no point in worrying about

it daily and bringing yourself down because there isnt anything we can

do about it. We just accept it, do what we can for him and go on.

But it is so hard. It is in my thoughts constantly. Like I said

before, some days are better than others. I try to tell myself to

just accept it, that things could be worse. There are much more

things out there that could be wrong. Far worse than a hearing loss.

But I still wonder...why him ???? I also have a 5 year old that is

EXTREMELY allergic to peanuts. I never knew how many products had

peanut warnings until I began to look. When I am not thinking about

, my 10 year old, I am thinking about Chad. What happens when he

starts dating and kisses a girl that has just ate a Snickers? Im not

real good at handling things. I guess I am somewhat of a worry-wart.

So I have to wonder why Ive been dealt this hand. Ya know?

> ...........I dont know - just writing it all out.

Sometimes it just helps to write it (type it). Ive always heard that

keeping a journal is good to help clear the mind. In a way, venting

on here is the same.

Tammy

[Guest guest]

Sara,

I have to reply. We have only known about my son Bobby's hearing loss since

Oct, though he has probably had the loss since he was 3 months old. I was

so excited, in a kind of warped way, when he got his first hearing aid,

because I thought, " OK, NOW we finally have an answer to all of this trouble

in school. NOW we finally have an answer to why he asks " WHY all the time.

Now I FINALLY have some solid ground to stand on when I say he needs extra

help. And FINALLY I know that I am not crazy, telling the school that he's

been saying " What? " to me ever since he could say the word. " But I will

tell you, it didn't hit me until about a month ago, when I started finding

out the ramifications of losing hearing as such a young age, and getting

diagnosed so late (almost 6 yrs old) that I began to realize this wasn't

such a wonderful thing to have discovered. In fact, most days it really

stinks. Bobby doesn't seem to know any better, but I think it'll get a lot

harder as he gets older and maybe it is not so " cool " to have hearing aids.

But as far as my world? It got tossed upside down. I feel embarrassed when

I wear the FM in stores and in public places, and everyone stares. And then

I feel guilty that I am embarrassed when my poor son has these two neon

signs dangling from his ears that he is different. In the car I'm OK. I

feel so sad when I have to bend down and get in his face for him to really

hear what I just said. When we were in the booth yesterday, and they tested

his new hearing aid, and he finally heard a tone that I couldn't hear myself

(up until now I sat there hearing all kinds of tones and he would sit there

oblivious because he didn't hear them at all.) I felt a tear drip down my

face from hope and joy that he could finally hear something that I couldn't.

About a minute later, the gave him a tone that he really should have heard,

did it several times, and he didn't get it, so the AV therapist had to model

for him that he should stack a peg when he heard the sound. She put the peg

up to her ear, the tone went off, and she said, " Oh, there it is, I hear

it! " and put the peg on the board. Then they did the tone again for Bobby,

he heard it this time, and put the peg on the board. Later I asked her why

she had to model it for him, he's done this a thousand times, and she said,

" Because that's a tone he's never heard before, he went all these years

without any amplification, and he probably didn't recognize it as a sound

that he should listen to. " I started crying. Gosh, he doesn't even know

what to do with them once he can hear them...because he is so unfamiliar

with certain tones. It just struck me like a ton of bricks.

They asked him to identify what two objects belong together out of three, by

just listening. The three objects were something like, cat, horse and lamp.

It was so hard for him to take those three words, remember them, manipulate

them into some kind of category, and pick the one that didn't belong...it

was so much work. Again, I was filled with fear about the future, as well

as sadness that he has to work so hard at something that would come so

easily to a regular kid with normal hearing entering kindergarten.

I thought I cried all the tears I had when I found out at birth he has a

heart defect. Then he went through the first open heart surgery, came

through it OK, and I said, " This isn't so bad, I can deal with this. " The

second, third and fourth surgeries almost killed him, and it kind of put it

all in perspective for me then. I remember one night in ICU when they were

having so much trouble keeping him alive, worked on his for 3 hours because

his BP kept plummeting, I said, " I don't care how he comes home, I don't

care if he comes home on a respirator, I don't care if he can't even walk

again, I don't care if he can't ever say my name, just please God, make him

come home. " I guess I got my wish...he " limped " out of the hospital, but he

did come home. So on a daily basis I have to remind myself that he is

alive, and this isn't his heart, and that we'll work through this other

hearing stuff a day at time. As long as I get to hold his warm cuddly body

at the end of the day, everything else will fall into place.

Sometimes you just have to remember that it could be a lot worse. And

believe me, I don't say that to downplay your grief, it really stinks some

days, and I wish no child ever had to work this hard just to hear, but it

really could be a lot worse. He'll learn to make the best of his disability

and so will you.

We'll be here for you, and you'll learn more than you ever could have

imagined about hearing loss and how to be your son's advocate. None of us

signed up for this job, I certainly didn't ask for a son who was born with

half a heart, but here he is and he is my hero.

Hugs,

Trish, mom to Bobby, almost 6 yrs old, single ventricle heart defect,

formerly Gtube fed for 4 years because of an oral aversion he developed

after he spent 3 months in ICU, formerly oxygen dependent, global delays

from so much time in the hospital, went into renal (kidney) failure X2 from

the surgeries, formerly was on dialysis until his kidneys recovered,

survivor of countless systemic infections which almost killed him, survivor

of systemic yeast infection which is usually fatal, oh, and while I'm at it,

my water broke in at 22 wks gestation and they said he'd never make it to

term, highly recommended terminating the pregnancy, he made it to term after

my sac repaired itself a week later and I never leaked again, and who is now

diagnosed with a mod/severe hearing loss in one ear and high freq loss in

the other because of the ototoxic meds they gave him in ICU to save his

life. But like I said, he's alive and everything else is a perk. It's all

perspective.

" i don't know why I'm feeling this way today about the whole

situation. I know that things could be so much worse and I feel

guilty for feeling down about their hearing loss. "

[Guest guest]

Sara,

I have to reply. We have only known about my son Bobby's hearing loss since

Oct, though he has probably had the loss since he was 3 months old. I was

so excited, in a kind of warped way, when he got his first hearing aid,

because I thought, " OK, NOW we finally have an answer to all of this trouble

in school. NOW we finally have an answer to why he asks " WHY all the time.

Now I FINALLY have some solid ground to stand on when I say he needs extra

help. And FINALLY I know that I am not crazy, telling the school that he's

been saying " What? " to me ever since he could say the word. " But I will

tell you, it didn't hit me until about a month ago, when I started finding

out the ramifications of losing hearing as such a young age, and getting

diagnosed so late (almost 6 yrs old) that I began to realize this wasn't

such a wonderful thing to have discovered. In fact, most days it really

stinks. Bobby doesn't seem to know any better, but I think it'll get a lot

harder as he gets older and maybe it is not so " cool " to have hearing aids.

But as far as my world? It got tossed upside down. I feel embarrassed when

I wear the FM in stores and in public places, and everyone stares. And then

I feel guilty that I am embarrassed when my poor son has these two neon

signs dangling from his ears that he is different. In the car I'm OK. I

feel so sad when I have to bend down and get in his face for him to really

hear what I just said. When we were in the booth yesterday, and they tested

his new hearing aid, and he finally heard a tone that I couldn't hear myself

(up until now I sat there hearing all kinds of tones and he would sit there

oblivious because he didn't hear them at all.) I felt a tear drip down my

face from hope and joy that he could finally hear something that I couldn't.

About a minute later, the gave him a tone that he really should have heard,

did it several times, and he didn't get it, so the AV therapist had to model

for him that he should stack a peg when he heard the sound. She put the peg

up to her ear, the tone went off, and she said, " Oh, there it is, I hear

it! " and put the peg on the board. Then they did the tone again for Bobby,

he heard it this time, and put the peg on the board. Later I asked her why

she had to model it for him, he's done this a thousand times, and she said,

" Because that's a tone he's never heard before, he went all these years

without any amplification, and he probably didn't recognize it as a sound

that he should listen to. " I started crying. Gosh, he doesn't even know

what to do with them once he can hear them...because he is so unfamiliar

with certain tones. It just struck me like a ton of bricks.

They asked him to identify what two objects belong together out of three, by

just listening. The three objects were something like, cat, horse and lamp.

It was so hard for him to take those three words, remember them, manipulate

them into some kind of category, and pick the one that didn't belong...it

was so much work. Again, I was filled with fear about the future, as well

as sadness that he has to work so hard at something that would come so

easily to a regular kid with normal hearing entering kindergarten.

I thought I cried all the tears I had when I found out at birth he has a

heart defect. Then he went through the first open heart surgery, came

through it OK, and I said, " This isn't so bad, I can deal with this. " The

second, third and fourth surgeries almost killed him, and it kind of put it

all in perspective for me then. I remember one night in ICU when they were

having so much trouble keeping him alive, worked on his for 3 hours because

his BP kept plummeting, I said, " I don't care how he comes home, I don't

care if he comes home on a respirator, I don't care if he can't even walk

again, I don't care if he can't ever say my name, just please God, make him

come home. " I guess I got my wish...he " limped " out of the hospital, but he

did come home. So on a daily basis I have to remind myself that he is

alive, and this isn't his heart, and that we'll work through this other

hearing stuff a day at time. As long as I get to hold his warm cuddly body

at the end of the day, everything else will fall into place.

Sometimes you just have to remember that it could be a lot worse. And

believe me, I don't say that to downplay your grief, it really stinks some

days, and I wish no child ever had to work this hard just to hear, but it

really could be a lot worse. He'll learn to make the best of his disability

and so will you.

We'll be here for you, and you'll learn more than you ever could have

imagined about hearing loss and how to be your son's advocate. None of us

signed up for this job, I certainly didn't ask for a son who was born with

half a heart, but here he is and he is my hero.

Hugs,

Trish, mom to Bobby, almost 6 yrs old, single ventricle heart defect,

formerly Gtube fed for 4 years because of an oral aversion he developed

after he spent 3 months in ICU, formerly oxygen dependent, global delays

from so much time in the hospital, went into renal (kidney) failure X2 from

the surgeries, formerly was on dialysis until his kidneys recovered,

survivor of countless systemic infections which almost killed him, survivor

of systemic yeast infection which is usually fatal, oh, and while I'm at it,

my water broke in at 22 wks gestation and they said he'd never make it to

term, highly recommended terminating the pregnancy, he made it to term after

my sac repaired itself a week later and I never leaked again, and who is now

diagnosed with a mod/severe hearing loss in one ear and high freq loss in

the other because of the ototoxic meds they gave him in ICU to save his

life. But like I said, he's alive and everything else is a perk. It's all

perspective.

" i don't know why I'm feeling this way today about the whole

situation. I know that things could be so much worse and I feel

guilty for feeling down about their hearing loss. "

[Guest guest]

Sara,

I have to reply. We have only known about my son Bobby's hearing loss since

Oct, though he has probably had the loss since he was 3 months old. I was

so excited, in a kind of warped way, when he got his first hearing aid,

because I thought, " OK, NOW we finally have an answer to all of this trouble

in school. NOW we finally have an answer to why he asks " WHY all the time.

Now I FINALLY have some solid ground to stand on when I say he needs extra

help. And FINALLY I know that I am not crazy, telling the school that he's

been saying " What? " to me ever since he could say the word. " But I will

tell you, it didn't hit me until about a month ago, when I started finding

out the ramifications of losing hearing as such a young age, and getting

diagnosed so late (almost 6 yrs old) that I began to realize this wasn't

such a wonderful thing to have discovered. In fact, most days it really

stinks. Bobby doesn't seem to know any better, but I think it'll get a lot

harder as he gets older and maybe it is not so " cool " to have hearing aids.

But as far as my world? It got tossed upside down. I feel embarrassed when

I wear the FM in stores and in public places, and everyone stares. And then

I feel guilty that I am embarrassed when my poor son has these two neon

signs dangling from his ears that he is different. In the car I'm OK. I

feel so sad when I have to bend down and get in his face for him to really

hear what I just said. When we were in the booth yesterday, and they tested

his new hearing aid, and he finally heard a tone that I couldn't hear myself

(up until now I sat there hearing all kinds of tones and he would sit there

oblivious because he didn't hear them at all.) I felt a tear drip down my

face from hope and joy that he could finally hear something that I couldn't.

About a minute later, the gave him a tone that he really should have heard,

did it several times, and he didn't get it, so the AV therapist had to model

for him that he should stack a peg when he heard the sound. She put the peg

up to her ear, the tone went off, and she said, " Oh, there it is, I hear

it! " and put the peg on the board. Then they did the tone again for Bobby,

he heard it this time, and put the peg on the board. Later I asked her why

she had to model it for him, he's done this a thousand times, and she said,

" Because that's a tone he's never heard before, he went all these years

without any amplification, and he probably didn't recognize it as a sound

that he should listen to. " I started crying. Gosh, he doesn't even know

what to do with them once he can hear them...because he is so unfamiliar

with certain tones. It just struck me like a ton of bricks.

They asked him to identify what two objects belong together out of three, by

just listening. The three objects were something like, cat, horse and lamp.

It was so hard for him to take those three words, remember them, manipulate

them into some kind of category, and pick the one that didn't belong...it

was so much work. Again, I was filled with fear about the future, as well

as sadness that he has to work so hard at something that would come so

easily to a regular kid with normal hearing entering kindergarten.

I thought I cried all the tears I had when I found out at birth he has a

heart defect. Then he went through the first open heart surgery, came

through it OK, and I said, " This isn't so bad, I can deal with this. " The

second, third and fourth surgeries almost killed him, and it kind of put it

all in perspective for me then. I remember one night in ICU when they were

having so much trouble keeping him alive, worked on his for 3 hours because

his BP kept plummeting, I said, " I don't care how he comes home, I don't

care if he comes home on a respirator, I don't care if he can't even walk

again, I don't care if he can't ever say my name, just please God, make him

come home. " I guess I got my wish...he " limped " out of the hospital, but he

did come home. So on a daily basis I have to remind myself that he is

alive, and this isn't his heart, and that we'll work through this other

hearing stuff a day at time. As long as I get to hold his warm cuddly body

at the end of the day, everything else will fall into place.

Sometimes you just have to remember that it could be a lot worse. And

believe me, I don't say that to downplay your grief, it really stinks some

days, and I wish no child ever had to work this hard just to hear, but it

really could be a lot worse. He'll learn to make the best of his disability

and so will you.

We'll be here for you, and you'll learn more than you ever could have

imagined about hearing loss and how to be your son's advocate. None of us

signed up for this job, I certainly didn't ask for a son who was born with

half a heart, but here he is and he is my hero.

Hugs,

Trish, mom to Bobby, almost 6 yrs old, single ventricle heart defect,

formerly Gtube fed for 4 years because of an oral aversion he developed

after he spent 3 months in ICU, formerly oxygen dependent, global delays

from so much time in the hospital, went into renal (kidney) failure X2 from

the surgeries, formerly was on dialysis until his kidneys recovered,

survivor of countless systemic infections which almost killed him, survivor

of systemic yeast infection which is usually fatal, oh, and while I'm at it,

my water broke in at 22 wks gestation and they said he'd never make it to

term, highly recommended terminating the pregnancy, he made it to term after

my sac repaired itself a week later and I never leaked again, and who is now

diagnosed with a mod/severe hearing loss in one ear and high freq loss in

the other because of the ototoxic meds they gave him in ICU to save his

life. But like I said, he's alive and everything else is a perk. It's all

perspective.

" i don't know why I'm feeling this way today about the whole

situation. I know that things could be so much worse and I feel

guilty for feeling down about their hearing loss. "

[Guest guest]

I'm reading along, really feeling the pain that everyone is

expressing, and thinking about how at 14 Maggie is so worried about

how the hearing aids look that she'd rather have them invisible than

be able to hear .... Then I read Jill's description of watching Mr.

Holland's Opus with her " furry beastie " - my husband is also super

sensitive and cries at this part of the movie. And the part where he

has the loudspeakers and the signed song... But then I was ROFL

because at our house, we too have a " furry beastie " but he lives in

the back yard and is a black golden retriever! He nutted up at the

groomer this week when we were getting his annual summer

transformation (to look like a lab) and they only got about 40% of him

shaved before he went nuts. And it is a pretty raggedy looking 40%.

We felt so sorry for him that we haven't taken him to the vet to be

sedated and get the shaving job finished. So all weekend I've been

petting him and saying " You poor furry beastie!! " So I'm laughing and

crying at the same time!

[Guest guest]

I'm reading along, really feeling the pain that everyone is

expressing, and thinking about how at 14 Maggie is so worried about

how the hearing aids look that she'd rather have them invisible than

be able to hear .... Then I read Jill's description of watching Mr.

Holland's Opus with her " furry beastie " - my husband is also super

sensitive and cries at this part of the movie. And the part where he

has the loudspeakers and the signed song... But then I was ROFL

because at our house, we too have a " furry beastie " but he lives in

the back yard and is a black golden retriever! He nutted up at the

groomer this week when we were getting his annual summer

transformation (to look like a lab) and they only got about 40% of him

shaved before he went nuts. And it is a pretty raggedy looking 40%.

We felt so sorry for him that we haven't taken him to the vet to be

sedated and get the shaving job finished. So all weekend I've been

petting him and saying " You poor furry beastie!! " So I'm laughing and

crying at the same time!

[Guest guest]

Thank you everyone - its good to hear that I'm not some big dweeb sitting here

crying because my son has a hearing loss!!! That its all normal. Deep down I

" know " its all normal. But then it feels like this is all I feel some days.

When we found out about Hannah at 4 I really was OK with it. It explained so

much about her. It felt like a relief. But with Jake, ugh - I don't know - it

makes me angry. Why do both have to be HOH? Someways I'm " happy " because

Hannah will no longer be the only one - but then I feel sick to my stomach that

I'm happy about it.

We'll see how tomorrow goes. I don't know what to expect. Hannah was 4 and I

could talk to her about it - make her understand. But jake is only 14 months.

I can't talk to him about it. And I know the first time he points and grunts at

his ears I'm going to break down in tears!!!!

On a good note - I found a TOD that lives around the corner from me!! She use

to work at Chinchuba Institute - the former deaf school in N.O. (I think it has

closed down now??) and she's willing to teach us sign and work with us - for

free!!! So that is a positive note - I guess I'll work on focusing on that.

I really am not some big lush all the time - I swear I'm not - but these kids

just do me in!!!!

__________________________________________________

[Guest guest]

Thank you everyone - its good to hear that I'm not some big dweeb sitting here

crying because my son has a hearing loss!!! That its all normal. Deep down I

" know " its all normal. But then it feels like this is all I feel some days.

When we found out about Hannah at 4 I really was OK with it. It explained so

much about her. It felt like a relief. But with Jake, ugh - I don't know - it

makes me angry. Why do both have to be HOH? Someways I'm " happy " because

Hannah will no longer be the only one - but then I feel sick to my stomach that

I'm happy about it.

We'll see how tomorrow goes. I don't know what to expect. Hannah was 4 and I

could talk to her about it - make her understand. But jake is only 14 months.

I can't talk to him about it. And I know the first time he points and grunts at

his ears I'm going to break down in tears!!!!

On a good note - I found a TOD that lives around the corner from me!! She use

to work at Chinchuba Institute - the former deaf school in N.O. (I think it has

closed down now??) and she's willing to teach us sign and work with us - for

free!!! So that is a positive note - I guess I'll work on focusing on that.

I really am not some big lush all the time - I swear I'm not - but these kids

just do me in!!!!

__________________________________________________

[Guest guest]

Thank you everyone - its good to hear that I'm not some big dweeb sitting here

crying because my son has a hearing loss!!! That its all normal. Deep down I

" know " its all normal. But then it feels like this is all I feel some days.

When we found out about Hannah at 4 I really was OK with it. It explained so

much about her. It felt like a relief. But with Jake, ugh - I don't know - it

makes me angry. Why do both have to be HOH? Someways I'm " happy " because

Hannah will no longer be the only one - but then I feel sick to my stomach that

I'm happy about it.

We'll see how tomorrow goes. I don't know what to expect. Hannah was 4 and I

could talk to her about it - make her understand. But jake is only 14 months.

I can't talk to him about it. And I know the first time he points and grunts at

his ears I'm going to break down in tears!!!!

On a good note - I found a TOD that lives around the corner from me!! She use

to work at Chinchuba Institute - the former deaf school in N.O. (I think it has

closed down now??) and she's willing to teach us sign and work with us - for

free!!! So that is a positive note - I guess I'll work on focusing on that.

I really am not some big lush all the time - I swear I'm not - but these kids

just do me in!!!!

__________________________________________________

[Guest guest]

I am a little late to this, but I wanted to let you know. I have so been

there. It was horrific waiting for 10 months to finally get a diagnosis for

my daughter only to find out it was the worst diagnosis possible - profound

SNHL. I remember walking around in a fog for a few days.

I had a birthday party to go to for a very close friend's little boy. I just

couldn't. I could. not. be around all of those 'normal' hearing children. I

think I spent a week crying during Allie's nap time or at bed time. I

unplugged the phone for a few days after we got the diagnosis. After a well

meaning friend said - well I know you have to be RELIEVED. you finally have

an answer. I started holding on to the motto: This too shall pass. I held

on to that like a life raft. While navigating hearing aids and dealing with

people in the grocery store commenting on how sad it was that my beautiful

daughter had hearing aids.

I have been there. I know it doesn't make you feel any better. But I just

wanted to say, I have been on the bus you are on. It is a long bumpy ride.

Some days are better than others. There will always be days we wish our

kids had normal hearing.

I had one today while at the pool with Allie. It was tough watching her try

to read lips to play with 2 other little girls at the pool. But, she was

happy and had a blast. She talks quite well with her Implants off and while

waiting in line for a snow cone she pointed out that the very large man in

front of us 'had a lot of junk in his trunk' sigh That was fun to

explain.

I am kind of rambling but, this is the best I can do for a hug.

Take care and know that we are all here for you if you need to talk.

Angie in KS

mom to Allie 4 yrs bilateral N24

>

> Thank you everyone - its good to hear that I'm not some big dweeb

> sitting here crying because my son has a hearing loss!!! That its all

> normal. Deep down I " know " its all normal. But then it feels like this is

> all I feel some days.

>

> When we found out about Hannah at 4 I really was OK with it. It explained

> so much about her. It felt like a relief. But with Jake, ugh - I don't know

> - it makes me angry. Why do both have to be HOH? Someways I'm " happy "

> because Hannah will no longer be the only one - but then I feel sick to my

> stomach that I'm happy about it.

>

> We'll see how tomorrow goes. I don't know what to expect. Hannah was 4 and

> I could talk to her about it - make her understand. But jake is only 14

> months. I can't talk to him about it. And I know the first time he points

> and grunts at his ears I'm going to break down in tears!!!!

>

> On a good note - I found a TOD that lives around the corner from me!! She

> use to work at Chinchuba Institute - the former deaf school in N.O. (I

> think it has closed down now??) and she's willing to teach us sign and work

> with us - for free!!! So that is a positive note - I guess I'll work on

> focusing on that.

>

> I really am not some big lush all the time - I swear I'm not - but these

> kids just do me in!!!!

>

> __________________________________________________

>

[Guest guest]

Hello Trish and Sara,

I just had to respond to your emails. My daughter Alyanna is 7 years and she's

HOH. We discovered her diagnosis when she was 2. I can relate to your feelings

and is just like Trish said " It can be worse " . Till this day I feel so bad for

my daughter because I can see that she tries so hard to hear and to explain what

she is trying to say. There are definetly better days than others but the good

days overcome the bad ones. Just yesterday I got frustrated because Alyanna was

playing with the kids from the neighborhood and I over heard them making fun of

her speech. I quickly grabbed her, explain to the kids why they shouldn't do

that and took her home. Instead of her getting mad I was the one crying. She

then came up to me and told me she knows how to defend herself and she is a big

girl (but in a cute way). That broke my heart even more. Sometimes as parents we

think our kids don't know what's going on (especially D/HOH kids) but they do.

They learn to deal with issues in

this wold before we do. My daughter is the one that keeps my head up, holds my

hand tight and helps to keep walking.

I read all the emails but alot of the times I don't have much time to write

back. Reading your emails my heart went to you guys. Believe me when I say these

kids are so strong and smart, and when they do feel down they have already

taught us to be strong so we'll be there to help them up.

Blessings,

in FL

Alyanna 7, HOH

4 & 1, Hearing

Trish Whitehouse chester2001@...> wrote:

Sara,

I have to reply. We have only known about my son Bobby's hearing loss since

Oct, though he has probably had the loss since he was 3 months old. I was

so excited, in a kind of warped way, when he got his first hearing aid,

because I thought, " OK, NOW we finally have an answer to all of this trouble

in school. NOW we finally have an answer to why he asks " WHY all the time.

Now I FINALLY have some solid ground to stand on when I say he needs extra

help. And FINALLY I know that I am not crazy, telling the school that he's

been saying " What? " to me ever since he could say the word. " But I will

tell you, it didn't hit me until about a month ago, when I started finding

out the ramifications of losing hearing as such a young age, and getting

diagnosed so late (almost 6 yrs old) that I began to realize this wasn't

such a wonderful thing to have discovered. In fact, most days it really

stinks. Bobby doesn't seem to know any better, but I think it'll get a lot

harder as he gets older and maybe it is not so " cool " to have hearing aids.

But as far as my world? It got tossed upside down. I feel embarrassed when

I wear the FM in stores and in public places, and everyone stares. And then

I feel guilty that I am embarrassed when my poor son has these two neon

signs dangling from his ears that he is different. In the car I'm OK. I

feel so sad when I have to bend down and get in his face for him to really

hear what I just said. When we were in the booth yesterday, and they tested

his new hearing aid, and he finally heard a tone that I couldn't hear myself

(up until now I sat there hearing all kinds of tones and he would sit there

oblivious because he didn't hear them at all.) I felt a tear drip down my

face from hope and joy that he could finally hear something that I couldn't.

About a minute later, the gave him a tone that he really should have heard,

did it several times, and he didn't get it, so the AV therapist had to model

for him that he should stack a peg when he heard the sound. She put the peg

up to her ear, the tone went off, and she said, " Oh, there it is, I hear

it! " and put the peg on the board. Then they did the tone again for Bobby,

he heard it this time, and put the peg on the board. Later I asked her why

she had to model it for him, he's done this a thousand times, and she said,

" Because that's a tone he's never heard before, he went all these years

without any amplification, and he probably didn't recognize it as a sound

that he should listen to. " I started crying. Gosh, he doesn't even know

what to do with them once he can hear them...because he is so unfamiliar

with certain tones. It just struck me like a ton of bricks.

They asked him to identify what two objects belong together out of three, by

just listening. The three objects were something like, cat, horse and lamp.

It was so hard for him to take those three words, remember them, manipulate

them into some kind of category, and pick the one that didn't belong...it

was so much work. Again, I was filled with fear about the future, as well

as sadness that he has to work so hard at something that would come so

easily to a regular kid with normal hearing entering kindergarten.

I thought I cried all the tears I had when I found out at birth he has a

heart defect. Then he went through the first open heart surgery, came

through it OK, and I said, " This isn't so bad, I can deal with this. " The

second, third and fourth surgeries almost killed him, and it kind of put it

all in perspective for me then. I remember one night in ICU when they were

having so much trouble keeping him alive, worked on his for 3 hours because

his BP kept plummeting, I said, " I don't care how he comes home, I don't

care if he comes home on a respirator, I don't care if he can't even walk

again, I don't care if he can't ever say my name, just please God, make him

come home. " I guess I got my wish...he " limped " out of the hospital, but he

did come home. So on a daily basis I have to remind myself that he is

alive, and this isn't his heart, and that we'll work through this other

hearing stuff a day at time. As long as I get to hold his warm cuddly body

at the end of the day, everything else will fall into place.

Sometimes you just have to remember that it could be a lot worse. And

believe me, I don't say that to downplay your grief, it really stinks some

days, and I wish no child ever had to work this hard just to hear, but it

really could be a lot worse. He'll learn to make the best of his disability

and so will you.

We'll be here for you, and you'll learn more than you ever could have

imagined about hearing loss and how to be your son's advocate. None of us

signed up for this job, I certainly didn't ask for a son who was born with

half a heart, but here he is and he is my hero.

Hugs,

Trish, mom to Bobby, almost 6 yrs old, single ventricle heart defect,

formerly Gtube fed for 4 years because of an oral aversion he developed

after he spent 3 months in ICU, formerly oxygen dependent, global delays

from so much time in the hospital, went into renal (kidney) failure X2 from

the surgeries, formerly was on dialysis until his kidneys recovered,

survivor of countless systemic infections which almost killed him, survivor

of systemic yeast infection which is usually fatal, oh, and while I'm at it,

my water broke in at 22 wks gestation and they said he'd never make it to

term, highly recommended terminating the pregnancy, he made it to term after

my sac repaired itself a week later and I never leaked again, and who is now

diagnosed with a mod/severe hearing loss in one ear and high freq loss in

the other because of the ototoxic meds they gave him in ICU to save his

life. But like I said, he's alive and everything else is a perk. It's all

perspective.

" i don't know why I'm feeling this way today about the whole

situation. I know that things could be so much worse and I feel

guilty for feeling down about their hearing loss. "

---------------------------------

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates

starting at 1¢/min.

[Guest guest]

Hello Trish and Sara,

I just had to respond to your emails. My daughter Alyanna is 7 years and she's

HOH. We discovered her diagnosis when she was 2. I can relate to your feelings

and is just like Trish said " It can be worse " . Till this day I feel so bad for

my daughter because I can see that she tries so hard to hear and to explain what

she is trying to say. There are definetly better days than others but the good

days overcome the bad ones. Just yesterday I got frustrated because Alyanna was

playing with the kids from the neighborhood and I over heard them making fun of

her speech. I quickly grabbed her, explain to the kids why they shouldn't do

that and took her home. Instead of her getting mad I was the one crying. She

then came up to me and told me she knows how to defend herself and she is a big

girl (but in a cute way). That broke my heart even more. Sometimes as parents we

think our kids don't know what's going on (especially D/HOH kids) but they do.

They learn to deal with issues in

this wold before we do. My daughter is the one that keeps my head up, holds my

hand tight and helps to keep walking.

I read all the emails but alot of the times I don't have much time to write

back. Reading your emails my heart went to you guys. Believe me when I say these

kids are so strong and smart, and when they do feel down they have already

taught us to be strong so we'll be there to help them up.

Blessings,

in FL

Alyanna 7, HOH

4 & 1, Hearing

Trish Whitehouse chester2001@...> wrote:

Sara,

I have to reply. We have only known about my son Bobby's hearing loss since

Oct, though he has probably had the loss since he was 3 months old. I was

so excited, in a kind of warped way, when he got his first hearing aid,

because I thought, " OK, NOW we finally have an answer to all of this trouble

in school. NOW we finally have an answer to why he asks " WHY all the time.

Now I FINALLY have some solid ground to stand on when I say he needs extra

help. And FINALLY I know that I am not crazy, telling the school that he's

been saying " What? " to me ever since he could say the word. " But I will

tell you, it didn't hit me until about a month ago, when I started finding

out the ramifications of losing hearing as such a young age, and getting

diagnosed so late (almost 6 yrs old) that I began to realize this wasn't

such a wonderful thing to have discovered. In fact, most days it really

stinks. Bobby doesn't seem to know any better, but I think it'll get a lot

harder as he gets older and maybe it is not so " cool " to have hearing aids.

But as far as my world? It got tossed upside down. I feel embarrassed when

I wear the FM in stores and in public places, and everyone stares. And then

I feel guilty that I am embarrassed when my poor son has these two neon

signs dangling from his ears that he is different. In the car I'm OK. I

feel so sad when I have to bend down and get in his face for him to really

hear what I just said. When we were in the booth yesterday, and they tested

his new hearing aid, and he finally heard a tone that I couldn't hear myself

(up until now I sat there hearing all kinds of tones and he would sit there

oblivious because he didn't hear them at all.) I felt a tear drip down my

face from hope and joy that he could finally hear something that I couldn't.

About a minute later, the gave him a tone that he really should have heard,

did it several times, and he didn't get it, so the AV therapist had to model

for him that he should stack a peg when he heard the sound. She put the peg

up to her ear, the tone went off, and she said, " Oh, there it is, I hear

it! " and put the peg on the board. Then they did the tone again for Bobby,

he heard it this time, and put the peg on the board. Later I asked her why

she had to model it for him, he's done this a thousand times, and she said,

" Because that's a tone he's never heard before, he went all these years

without any amplification, and he probably didn't recognize it as a sound

that he should listen to. " I started crying. Gosh, he doesn't even know

what to do with them once he can hear them...because he is so unfamiliar

with certain tones. It just struck me like a ton of bricks.

They asked him to identify what two objects belong together out of three, by

just listening. The three objects were something like, cat, horse and lamp.

It was so hard for him to take those three words, remember them, manipulate

them into some kind of category, and pick the one that didn't belong...it

was so much work. Again, I was filled with fear about the future, as well

as sadness that he has to work so hard at something that would come so

easily to a regular kid with normal hearing entering kindergarten.

I thought I cried all the tears I had when I found out at birth he has a

heart defect. Then he went through the first open heart surgery, came

through it OK, and I said, " This isn't so bad, I can deal with this. " The

second, third and fourth surgeries almost killed him, and it kind of put it

all in perspective for me then. I remember one night in ICU when they were

having so much trouble keeping him alive, worked on his for 3 hours because

his BP kept plummeting, I said, " I don't care how he comes home, I don't

care if he comes home on a respirator, I don't care if he can't even walk

again, I don't care if he can't ever say my name, just please God, make him

come home. " I guess I got my wish...he " limped " out of the hospital, but he

did come home. So on a daily basis I have to remind myself that he is

alive, and this isn't his heart, and that we'll work through this other

hearing stuff a day at time. As long as I get to hold his warm cuddly body

at the end of the day, everything else will fall into place.

Sometimes you just have to remember that it could be a lot worse. And

believe me, I don't say that to downplay your grief, it really stinks some

days, and I wish no child ever had to work this hard just to hear, but it

really could be a lot worse. He'll learn to make the best of his disability

and so will you.

We'll be here for you, and you'll learn more than you ever could have

imagined about hearing loss and how to be your son's advocate. None of us

signed up for this job, I certainly didn't ask for a son who was born with

half a heart, but here he is and he is my hero.

Hugs,

Trish, mom to Bobby, almost 6 yrs old, single ventricle heart defect,

formerly Gtube fed for 4 years because of an oral aversion he developed

after he spent 3 months in ICU, formerly oxygen dependent, global delays

from so much time in the hospital, went into renal (kidney) failure X2 from

the surgeries, formerly was on dialysis until his kidneys recovered,

survivor of countless systemic infections which almost killed him, survivor

of systemic yeast infection which is usually fatal, oh, and while I'm at it,

my water broke in at 22 wks gestation and they said he'd never make it to

term, highly recommended terminating the pregnancy, he made it to term after

my sac repaired itself a week later and I never leaked again, and who is now

diagnosed with a mod/severe hearing loss in one ear and high freq loss in

the other because of the ototoxic meds they gave him in ICU to save his

life. But like I said, he's alive and everything else is a perk. It's all

perspective.

" i don't know why I'm feeling this way today about the whole

situation. I know that things could be so much worse and I feel

guilty for feeling down about their hearing loss. "

---------------------------------

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates

starting at 1¢/min.

[Guest guest]

Hello Trish and Sara,

I just had to respond to your emails. My daughter Alyanna is 7 years and she's

HOH. We discovered her diagnosis when she was 2. I can relate to your feelings

and is just like Trish said " It can be worse " . Till this day I feel so bad for

my daughter because I can see that she tries so hard to hear and to explain what

she is trying to say. There are definetly better days than others but the good

days overcome the bad ones. Just yesterday I got frustrated because Alyanna was

playing with the kids from the neighborhood and I over heard them making fun of

her speech. I quickly grabbed her, explain to the kids why they shouldn't do

that and took her home. Instead of her getting mad I was the one crying. She

then came up to me and told me she knows how to defend herself and she is a big

girl (but in a cute way). That broke my heart even more. Sometimes as parents we

think our kids don't know what's going on (especially D/HOH kids) but they do.

They learn to deal with issues in

this wold before we do. My daughter is the one that keeps my head up, holds my

hand tight and helps to keep walking.

I read all the emails but alot of the times I don't have much time to write

back. Reading your emails my heart went to you guys. Believe me when I say these

kids are so strong and smart, and when they do feel down they have already

taught us to be strong so we'll be there to help them up.

Blessings,

in FL

Alyanna 7, HOH

4 & 1, Hearing

Trish Whitehouse chester2001@...> wrote:

Sara,

I have to reply. We have only known about my son Bobby's hearing loss since

Oct, though he has probably had the loss since he was 3 months old. I was

so excited, in a kind of warped way, when he got his first hearing aid,

because I thought, " OK, NOW we finally have an answer to all of this trouble

in school. NOW we finally have an answer to why he asks " WHY all the time.

Now I FINALLY have some solid ground to stand on when I say he needs extra

help. And FINALLY I know that I am not crazy, telling the school that he's

been saying " What? " to me ever since he could say the word. " But I will

tell you, it didn't hit me until about a month ago, when I started finding

out the ramifications of losing hearing as such a young age, and getting

diagnosed so late (almost 6 yrs old) that I began to realize this wasn't

such a wonderful thing to have discovered. In fact, most days it really

stinks. Bobby doesn't seem to know any better, but I think it'll get a lot

harder as he gets older and maybe it is not so " cool " to have hearing aids.

But as far as my world? It got tossed upside down. I feel embarrassed when

I wear the FM in stores and in public places, and everyone stares. And then

I feel guilty that I am embarrassed when my poor son has these two neon

signs dangling from his ears that he is different. In the car I'm OK. I

feel so sad when I have to bend down and get in his face for him to really

hear what I just said. When we were in the booth yesterday, and they tested

his new hearing aid, and he finally heard a tone that I couldn't hear myself

(up until now I sat there hearing all kinds of tones and he would sit there

oblivious because he didn't hear them at all.) I felt a tear drip down my

face from hope and joy that he could finally hear something that I couldn't.

About a minute later, the gave him a tone that he really should have heard,

did it several times, and he didn't get it, so the AV therapist had to model

for him that he should stack a peg when he heard the sound. She put the peg

up to her ear, the tone went off, and she said, " Oh, there it is, I hear

it! " and put the peg on the board. Then they did the tone again for Bobby,

he heard it this time, and put the peg on the board. Later I asked her why

she had to model it for him, he's done this a thousand times, and she said,

" Because that's a tone he's never heard before, he went all these years

without any amplification, and he probably didn't recognize it as a sound

that he should listen to. " I started crying. Gosh, he doesn't even know

what to do with them once he can hear them...because he is so unfamiliar

with certain tones. It just struck me like a ton of bricks.

They asked him to identify what two objects belong together out of three, by

just listening. The three objects were something like, cat, horse and lamp.

It was so hard for him to take those three words, remember them, manipulate

them into some kind of category, and pick the one that didn't belong...it

was so much work. Again, I was filled with fear about the future, as well

as sadness that he has to work so hard at something that would come so

easily to a regular kid with normal hearing entering kindergarten.

I thought I cried all the tears I had when I found out at birth he has a

heart defect. Then he went through the first open heart surgery, came

through it OK, and I said, " This isn't so bad, I can deal with this. " The

second, third and fourth surgeries almost killed him, and it kind of put it

all in perspective for me then. I remember one night in ICU when they were

having so much trouble keeping him alive, worked on his for 3 hours because

his BP kept plummeting, I said, " I don't care how he comes home, I don't

care if he comes home on a respirator, I don't care if he can't even walk

again, I don't care if he can't ever say my name, just please God, make him

come home. " I guess I got my wish...he " limped " out of the hospital, but he

did come home. So on a daily basis I have to remind myself that he is

alive, and this isn't his heart, and that we'll work through this other

hearing stuff a day at time. As long as I get to hold his warm cuddly body

at the end of the day, everything else will fall into place.

Sometimes you just have to remember that it could be a lot worse. And

believe me, I don't say that to downplay your grief, it really stinks some

days, and I wish no child ever had to work this hard just to hear, but it

really could be a lot worse. He'll learn to make the best of his disability

and so will you.

We'll be here for you, and you'll learn more than you ever could have

imagined about hearing loss and how to be your son's advocate. None of us

signed up for this job, I certainly didn't ask for a son who was born with

half a heart, but here he is and he is my hero.

Hugs,

Trish, mom to Bobby, almost 6 yrs old, single ventricle heart defect,

formerly Gtube fed for 4 years because of an oral aversion he developed

after he spent 3 months in ICU, formerly oxygen dependent, global delays

from so much time in the hospital, went into renal (kidney) failure X2 from

the surgeries, formerly was on dialysis until his kidneys recovered,

survivor of countless systemic infections which almost killed him, survivor

of systemic yeast infection which is usually fatal, oh, and while I'm at it,

my water broke in at 22 wks gestation and they said he'd never make it to

term, highly recommended terminating the pregnancy, he made it to term after

my sac repaired itself a week later and I never leaked again, and who is now

diagnosed with a mod/severe hearing loss in one ear and high freq loss in

the other because of the ototoxic meds they gave him in ICU to save his

life. But like I said, he's alive and everything else is a perk. It's all

perspective.

" i don't know why I'm feeling this way today about the whole

situation. I know that things could be so much worse and I feel

guilty for feeling down about their hearing loss. "

---------------------------------

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates

starting at 1¢/min.

[Guest guest]

Good Morning,

I read your post this morning and it just took my back to the days when we

started our journey. I know there is little anyone else can say to make the

pain go away. I hated when people said things like " it could be worse " , or "

at least their not (some other disability) " etc. I wanted and needed time to

grieve. I was 5 month pregnant the day we found out that was profoundly

hearing impaired. Those moments will be embedded into the fiber of my life

forever. When Holly was born she too was diagnosed with a hearing loss, and

although I thought I was more prepared, because I had a little bit of education

by that point, I wasn't.

The girls are now 12 and 13 years old. The other day we did an interview

for our local paper, about making the high school cheerleading team. As I

was sharing some of our story with the reporter, I realized something amazing.

There was a time when we ate, breathed, slept, dreamed, lived hearing loss, but

that time is gone now. We just live. For all the moments I was sad that both

the girls had a hearing loss, I now know that they where a gift to each other.

They each have supported each other, and have always been great friends. The

girls have both played softball, and been on the swim team, and several cheer

teams, dance, and gymnastics. I stood by them for all of those, either as team

mom, assistant coach, or head coach, in a role as guess as their language

facilitators. On the day I dropped off for try-outs, I cried all the way

home I think because I couldn't be there. I didn't know if she would be ok, if

she would get all the directions, instructions, fit in ect. And on her very

own, she made the team.

I know today that we have been so blessed. The girls have taught their

siblings to be kind and excepting people. The girls have given me such

strength, to know no challenge is to big. I learn something from them everyday,

and in that I learn there is no battle to big to fight if you want it bad

enough. Every moment behind us that seemed so hard, and sad at the time, is a

moment now, that has put the whole puzzle together. God bless you in this time.

AB 8/99

Holly AB 12/99

A bad day

i don't know why I'm feeling this way today about the whole

situation. I know that things could be so much worse and I feel

guilty for feeling down about their hearing loss.

I hate the fact that what hearing they do have will most probably be

gone at some point in their life. That something they have been

given and will use will be taken away from them. Maybe we're lucky

to know that this will most probably happen - maybe I can teach them

to appreciate the sounds of life - the birds and cars, the ocean,

telling them I love them - before it is all gone.

I feel cheated out of some things in life. We went to my daughters

dance class today and it was painfully obvious that she just

couldn't hear the instructor. And to make matters worse, the

instructor wasn't even correcting her. I made me feel like she was

thinking " oh well - she can't hear me anyway - there is no point " .

It broke my heart. For the first time it made me see that there ARE

difficulties related to their hearing loss. I don't say limitations

because I don't ever want them to feel that they are limited - but

it hurts to feel that some things might be out of their grasp simply

because they may not want to put the extra effort in to it.

And who can blame them? I mean - seriously - I don't even feel like

door housework somedays!!! I can't even imagine having to work so

hard just to hear. Maybe I shouldn't be posting this - I don't want

to scare the new parents off. But I'm just feeling down about it.

There was an article in this weeks Time magazine with some reporter

from CNN (why can't I remember his name right now! And he's my

favorite reporter!) about what it was like growing up with a famous

mother. He said something along the lines of " the best thing about

my childhood was having to sit around the dinner table with my

family. I realized that they were just as unhappy as everyone

else. " So I know that " everyone " has a bump in the road too. So

why do I feel so isolated sometimes?

We go Monday to get Jakes hearing aids. I've already seen them, but

jeez I'm afraid. I just feel like this is it. The end of something

and the begining of something completely different. It just feels

so final for some reason. At least through all the testing I still

had hope - that it wasn't both kids. That it wasn't us. That it

was just some freak thing that happened to Hannah. And now I don't

have that wondering. This is it.

And I am scared out of my mind about the future. I know it looks

bright for them - new technology, futhur aiding if they need - just

more things for them.

And to make it even more frustrating is that my husband has his same

old " roll with the punches " attitude. I swear NOTHING gets to this

guy - and here I am in tears. Why does it seem like it has changed

nothing for him yet I feel like it has changed my entire life?

............I dont know - just writing it all out.

All messages posted to this list are private and confidential. Each post is the

intellectual property of the author and therefore subject to copyright

restrictions.

[Guest guest]

Good Morning,

I read your post this morning and it just took my back to the days when we

started our journey. I know there is little anyone else can say to make the

pain go away. I hated when people said things like " it could be worse " , or "

at least their not (some other disability) " etc. I wanted and needed time to

grieve. I was 5 month pregnant the day we found out that was profoundly

hearing impaired. Those moments will be embedded into the fiber of my life

forever. When Holly was born she too was diagnosed with a hearing loss, and

although I thought I was more prepared, because I had a little bit of education

by that point, I wasn't.

The girls are now 12 and 13 years old. The other day we did an interview

for our local paper, about making the high school cheerleading team. As I

was sharing some of our story with the reporter, I realized something amazing.

There was a time when we ate, breathed, slept, dreamed, lived hearing loss, but

that time is gone now. We just live. For all the moments I was sad that both

the girls had a hearing loss, I now know that they where a gift to each other.

They each have supported each other, and have always been great friends. The

girls have both played softball, and been on the swim team, and several cheer

teams, dance, and gymnastics. I stood by them for all of those, either as team

mom, assistant coach, or head coach, in a role as guess as their language

facilitators. On the day I dropped off for try-outs, I cried all the way

home I think because I couldn't be there. I didn't know if she would be ok, if

she would get all the directions, instructions, fit in ect. And on her very

own, she made the team.

I know today that we have been so blessed. The girls have taught their

siblings to be kind and excepting people. The girls have given me such

strength, to know no challenge is to big. I learn something from them everyday,

and in that I learn there is no battle to big to fight if you want it bad

enough. Every moment behind us that seemed so hard, and sad at the time, is a

moment now, that has put the whole puzzle together. God bless you in this time.

AB 8/99

Holly AB 12/99

A bad day

i don't know why I'm feeling this way today about the whole

situation. I know that things could be so much worse and I feel

guilty for feeling down about their hearing loss.

I hate the fact that what hearing they do have will most probably be

gone at some point in their life. That something they have been

given and will use will be taken away from them. Maybe we're lucky

to know that this will most probably happen - maybe I can teach them

to appreciate the sounds of life - the birds and cars, the ocean,

telling them I love them - before it is all gone.

I feel cheated out of some things in life. We went to my daughters

dance class today and it was painfully obvious that she just

couldn't hear the instructor. And to make matters worse, the

instructor wasn't even correcting her. I made me feel like she was

thinking " oh well - she can't hear me anyway - there is no point " .

It broke my heart. For the first time it made me see that there ARE

difficulties related to their hearing loss. I don't say limitations

because I don't ever want them to feel that they are limited - but

it hurts to feel that some things might be out of their grasp simply

because they may not want to put the extra effort in to it.

And who can blame them? I mean - seriously - I don't even feel like

door housework somedays!!! I can't even imagine having to work so

hard just to hear. Maybe I shouldn't be posting this - I don't want

to scare the new parents off. But I'm just feeling down about it.

There was an article in this weeks Time magazine with some reporter

from CNN (why can't I remember his name right now! And he's my

favorite reporter!) about what it was like growing up with a famous

mother. He said something along the lines of " the best thing about

my childhood was having to sit around the dinner table with my

family. I realized that they were just as unhappy as everyone

else. " So I know that " everyone " has a bump in the road too. So

why do I feel so isolated sometimes?

We go Monday to get Jakes hearing aids. I've already seen them, but

jeez I'm afraid. I just feel like this is it. The end of something

and the begining of something completely different. It just feels

so final for some reason. At least through all the testing I still

had hope - that it wasn't both kids. That it wasn't us. That it

was just some freak thing that happened to Hannah. And now I don't

have that wondering. This is it.

And I am scared out of my mind about the future. I know it looks

bright for them - new technology, futhur aiding if they need - just

more things for them.

And to make it even more frustrating is that my husband has his same

old " roll with the punches " attitude. I swear NOTHING gets to this

guy - and here I am in tears. Why does it seem like it has changed

nothing for him yet I feel like it has changed my entire life?

............I dont know - just writing it all out.

All messages posted to this list are private and confidential. Each post is the

intellectual property of the author and therefore subject to copyright

restrictions.

[Guest guest]

And the funny thing, I've never wanted to go to Italy. But always wanted to

visit Holland. Who knew I was already there. LOL

Thanks for the link ... I've never read that before.

-- Jill

[Guest guest]

> i don't know why I'm feeling this way today about the whole

> situation.

What you're feeling is perfectly normal. My son also has a progressive loss

and I can't even begin to tell you the tears I've cried over this very

thing.

> I feel

> guilty for feeling down about their hearing loss.

You feel the way you feel - it doesn't matter why you feel that way. What

matters is that you feel that way and I, for one, am here to support you.

Been there, done that, and I share your pain.

> I hate the fact that what hearing they do have will most probably be

> gone at some point in their life.

I well recall the day when JD looked up at me and said when he grew up like

me, his hearing would be normal. It broke my heart to have to tell him that

his hearing was getting worse as time went by, not better, and that when he

was my age, he wouldn't be able to hear, even with his hearing aids. What

really made it bad is that my son LOVES sound and wanted nothing more than

to be able to hear.

> maybe I can teach them

> to appreciate the sounds of life - the birds and cars, the ocean,

> telling them I love them - before it is all gone.

The strangest things can make us break down in tears. I recall once when JD

was about 3 and one of the neighborhood kids had gotten a seashell and was

running around having everyone listen to the sound of the ocean in it. Try

as JD might, he just couldn't hear it. I can't even begin to tell you why at

that moment it was such a big loss that he would never be able to hear such

a sound, but it was - and the tears flowed.

> I feel cheated out of some things in life.

If you haven't read WELCOME TO HOLLAND, do so NOW!

http://www.listen-up.org/edu/holland.htm

It wasn't till after I heard that recited by Warren Estabrooks at a

conference 17 years ago that I was able to look at JD's hearing loss with

new eyes. I've met Warren a few times and correspond with him frequently,

and I thank him regularly for reading that passage and telling him how much

it helped me - So much so that I got permission from it's author, Perl

Kingsley, so that I could put it on my website and share it with all of you.

> I made me feel like she was

> thinking " oh well - she can't hear me anyway - there is no point " .

> It broke my heart.

I quit videotaping the Christmas Programs at JD's public schools. They just

didn't get it. It just broke my heart to see the other kids stand up on the

stage with pride, singing the Christmas songs and JD would just stand there

obviously looking lost. I don't know why it was so important to them to keep

'hush-hush' what songs were going to be sung so I could at least teach JD

the words. Each year he just stood there, wanting to participate, but not

being able to. I still cry whenever I look at those videos. You should have

seen his face the first year he attended a school that did 'get it' and was

allowed to have a copy of the words to the song so he could participate.

THAT would have been worth videotaping, but of course, I didn't take my

camera.

> it hurts to feel that some things might be out of their grasp simply

> because they may not want to put the extra effort in to it.

I'll share with you an analogy I've used through the years with JD, and he

knows it well. Through the years, everything I've done for him has been to

ensure that all the doors along the path that he is going to take through

life are open. I wouldn't let anyone close a door for JD, if a door was to

be closed, it was JD who would close it. It was up to JD if he was going to

go through that door or not, but it was HIS option, nobody elses.

And last month, as he was preparing to cross that stage for his High School

Graduation, brimming with pride, he thanked me for opening the doors for him

so that his future was HIS.

> So

> why do I feel so isolated sometimes?

That's why we're all here. It's so difficult for others to understand what

we go through emotionally - which is why this group is restricted to

" Parents Only " . You don't have to feel guilty about how you feel - the fact

is that you feel that way, and we're here to offer you an understanding

shoulder to either cry on or to support yourself with.

-Kay

Kay

kay@...

The Listen-Up Web

http://www.listen-up.org

[Guest guest]

> i don't know why I'm feeling this way today about the whole

> situation.

What you're feeling is perfectly normal. My son also has a progressive loss

and I can't even begin to tell you the tears I've cried over this very

thing.

> I feel

> guilty for feeling down about their hearing loss.

You feel the way you feel - it doesn't matter why you feel that way. What

matters is that you feel that way and I, for one, am here to support you.

Been there, done that, and I share your pain.

> I hate the fact that what hearing they do have will most probably be

> gone at some point in their life.

I well recall the day when JD looked up at me and said when he grew up like

me, his hearing would be normal. It broke my heart to have to tell him that

his hearing was getting worse as time went by, not better, and that when he

was my age, he wouldn't be able to hear, even with his hearing aids. What

really made it bad is that my son LOVES sound and wanted nothing more than

to be able to hear.

> maybe I can teach them

> to appreciate the sounds of life - the birds and cars, the ocean,

> telling them I love them - before it is all gone.

The strangest things can make us break down in tears. I recall once when JD

was about 3 and one of the neighborhood kids had gotten a seashell and was

running around having everyone listen to the sound of the ocean in it. Try

as JD might, he just couldn't hear it. I can't even begin to tell you why at

that moment it was such a big loss that he would never be able to hear such

a sound, but it was - and the tears flowed.

> I feel cheated out of some things in life.

If you haven't read WELCOME TO HOLLAND, do so NOW!

http://www.listen-up.org/edu/holland.htm

It wasn't till after I heard that recited by Warren Estabrooks at a

conference 17 years ago that I was able to look at JD's hearing loss with

new eyes. I've met Warren a few times and correspond with him frequently,

and I thank him regularly for reading that passage and telling him how much

it helped me - So much so that I got permission from it's author, Perl

Kingsley, so that I could put it on my website and share it with all of you.

> I made me feel like she was

> thinking " oh well - she can't hear me anyway - there is no point " .

> It broke my heart.

I quit videotaping the Christmas Programs at JD's public schools. They just

didn't get it. It just broke my heart to see the other kids stand up on the

stage with pride, singing the Christmas songs and JD would just stand there

obviously looking lost. I don't know why it was so important to them to keep

'hush-hush' what songs were going to be sung so I could at least teach JD

the words. Each year he just stood there, wanting to participate, but not

being able to. I still cry whenever I look at those videos. You should have

seen his face the first year he attended a school that did 'get it' and was

allowed to have a copy of the words to the song so he could participate.

THAT would have been worth videotaping, but of course, I didn't take my

camera.

> it hurts to feel that some things might be out of their grasp simply

> because they may not want to put the extra effort in to it.

I'll share with you an analogy I've used through the years with JD, and he

knows it well. Through the years, everything I've done for him has been to

ensure that all the doors along the path that he is going to take through

life are open. I wouldn't let anyone close a door for JD, if a door was to

be closed, it was JD who would close it. It was up to JD if he was going to

go through that door or not, but it was HIS option, nobody elses.

And last month, as he was preparing to cross that stage for his High School

Graduation, brimming with pride, he thanked me for opening the doors for him

so that his future was HIS.

> So

> why do I feel so isolated sometimes?

That's why we're all here. It's so difficult for others to understand what

we go through emotionally - which is why this group is restricted to

" Parents Only " . You don't have to feel guilty about how you feel - the fact

is that you feel that way, and we're here to offer you an understanding

shoulder to either cry on or to support yourself with.

-Kay

Kay

kay@...

The Listen-Up Web

http://www.listen-up.org