Re: Thanks to all and some more advice

[Guest guest]

Nikki,

My son was dx at birth also with hearing loss. Like Colleen, I had an

extemely hard time in the beginning. And until I got in touch with other

parents that are going thru the same thing, I had little hope for my son and

my family. I am so thankful for the calls I recieved in the first few weeks

of 's life, like Colleen the people that called me were complete

strangers and I will be ever so grateful to them.

It does take a while to realise that your child is " just like everyone else,

the only difference is their ears don't work as well " ,

If this new mom, needs more people to talk to, I would be happy to call her

myself. If I can help another Mom, the way I was helped I will feel like I

have done my lifes' work here on earth.

Please Email Privately if you want my phone number.

Thanks,

Debbie

14 Months

----Original Message Follows----

Reply-To: Listen-Uponelist

To: Listen-Uponelist

Subject: Re: Thanks to all and some more advice

Date: Tue, 26 Oct 1999 18:14:45 -0400

Nikki,

Hello! My daughter le was diagnosed at birth, and I had a horrible

time in the beginning making the first move to call someone. I was very

involved in reading

all I could on hearing loss, and getting early intervention services

started, and finding as many list serves as I could so I could lurk and get

as much information as

possible. In the beginning felt so stupid to ask questions, but I really

wish I made the calls to people and talked to someone that has been in my

shoes. le has

special needs besides hearing loss and I beat myself up daily. What did I

do wrong. Its been a long 13 months but I will never feel stupid asking

another question

when it comes to my children. The people on this list serve, and the

people that have touched my life, have never once made me feel stupid

asking a question. And I

really wish I would have asked many questions sooner, but was scared to do

so. It wasn't until someone called me that had a child that was visually

impaired in both

eyes,( my daughter only has one eye affected) that I realized that I did

nothing wrong. This complete stranger called me long distance and talked for

over two hours,

gave me so much faith and uplifted me in a way I will never forget. She put

me in contact with people that she knew that had children with hearing loss,

since we are

fairly at it. By the end of the night I talked to 3 or 4 people which I

never knew before, but made me feel so much better. And if this person did

not call me on her

own, I probably would not of called her. I didn't want to bother her, I

know how much time is involved in dealing with a special needs child and

having a 5 year at

home, I always use to feel like I was bothering people. le's cornea

specialist constantly said call so and so she was in speech therapy, and she

has a child with

special needs and she is more than happy to talk to people that are down and

out like you are. She said you would feel better, but I never did. And I

really thank god

she called me. Because she has given me so many people and contacts to talk

too. So I would strongly suggest you calling this person, I am sure she is

just scared and

doesn't want to feel stupid. But at that same time really needs to know,

she is not alone. It takes a long time before you start to see your hard

work pay off.

le now gives us the faith we need to keep going. But when your new to

this adjustment and change you don't see that. You feel so alone. I would

say from my

experiences with how I was, I would say she would most definitely appreciate

your call and she will feel so much better. I would of felt so much better

if I asked the

questions I wanted to ask instead of just lurking every night on the

computer. But it took me honestly a good 6 months or so before I felt like

okay here I go, I am

going to post something, (this was another list I was on.)

Sorry it's so long.

Take care

Colleen

NPrisk@... wrote:

> From: NPrisk@...

>

> Thanks to all who wrote with tips on how to help Adam get ready for

surgery.

> We can visit the hospital and get a short tour the day before the surgery

so

> hopefully that will help him and me a little.

> I have a question to ask. There is a little baby in our community who

was

> diagnosed at birth with a hearing loss they are now finding out it is

severe

> to profound. My husband knows the father of the baby casually through

some

> fire department activities that they are both involved in. Many of our

> friends also know this couple. They have given them our phone number

and

> our audiologist has also told them to contact us (with our permission she

has

> given them our number and some basic information on Adam). Yesterday a

> mutual friend told me the Mom is having an awful time with feeling guilty

and

> blaming herself for her son's hearing loss. She asked if I wouldn't

consider

> calling her. That perhaps she is just too overwhelmed to make the first

move

> to discuss this with someone. I do know her name and number. My

question is

> should I call her or wait until she is ready to talk to someone? I only

to

> well remember those awful first months and the guilt. It was as if I was

> mourning for the loss of what I had hoped and dreamed for my son. I now

> understand the only thing Adam can't do is hear. What do you veteran

parents

> think? Any ideas would be appreciated.

> Take care,

> Nikki

>

> > 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.

------------------------------------------------------------------------

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.

<< text3.html >>

[Guest guest]

>mourning for the loss of what I had hoped and dreamed for my son. I now

>understand the only thing Adam can't do is hear. What do you veteran

parents

>think? Any ideas would be appreciated.

>Take care,

>Nikki

Call her. She is too overwhelmed. If you reach out to her she might be

able to know that it is normal to grieve her loss and blame herself but

there are lots worse things than not being able to hear.

Barb

[Guest guest]

Nikki,

Hello! My daughter le was diagnosed at birth, and I had a horrible time

in the beginning making the first move to call someone. I was very involved in

reading

all I could on hearing loss, and getting early intervention services started,

and finding as many list serves as I could so I could lurk and get as much

information as

possible. In the beginning felt so stupid to ask questions, but I really wish I

made the calls to people and talked to someone that has been in my shoes.

le has

special needs besides hearing loss and I beat myself up daily. What did I do

wrong. Its been a long 13 months but I will never feel stupid asking another

question

when it comes to my children. The people on this list serve, and the people

that have touched my life, have never once made me feel stupid asking a

question. And I

really wish I would have asked many questions sooner, but was scared to do so.

It wasn't until someone called me that had a child that was visually impaired in

both

eyes,( my daughter only has one eye affected) that I realized that I did nothing

wrong. This complete stranger called me long distance and talked for over two

hours,

gave me so much faith and uplifted me in a way I will never forget. She put me

in contact with people that she knew that had children with hearing loss, since

we are

fairly at it. By the end of the night I talked to 3 or 4 people which I never

knew before, but made me feel so much better. And if this person did not call

me on her

own, I probably would not of called her. I didn't want to bother her, I know

how much time is involved in dealing with a special needs child and having a 5

year at

home, I always use to feel like I was bothering people. le's cornea

specialist constantly said call so and so she was in speech therapy, and she has

a child with

special needs and she is more than happy to talk to people that are down and out

like you are. She said you would feel better, but I never did. And I really

thank god

she called me. Because she has given me so many people and contacts to talk

too. So I would strongly suggest you calling this person, I am sure she is just

scared and

doesn't want to feel stupid. But at that same time really needs to know, she is

not alone. It takes a long time before you start to see your hard work pay off.

le now gives us the faith we need to keep going. But when your new to

this adjustment and change you don't see that. You feel so alone. I would say

from my

experiences with how I was, I would say she would most definitely appreciate

your call and she will feel so much better. I would of felt so much better if I

asked the

questions I wanted to ask instead of just lurking every night on the computer.

But it took me honestly a good 6 months or so before I felt like okay here I go,

I am

going to post something, (this was another list I was on.)

Sorry it's so long.

Take care

Colleen

NPrisk@... wrote:

> From: NPrisk@...

>

> Thanks to all who wrote with tips on how to help Adam get ready for surgery.

> We can visit the hospital and get a short tour the day before the surgery so

> hopefully that will help him and me a little.

> I have a question to ask. There is a little baby in our community who was

> diagnosed at birth with a hearing loss they are now finding out it is severe

> to profound. My husband knows the father of the baby casually through some

> fire department activities that they are both involved in. Many of our

> friends also know this couple. They have given them our phone number and

> our audiologist has also told them to contact us (with our permission she has

> given them our number and some basic information on Adam). Yesterday a

> mutual friend told me the Mom is having an awful time with feeling guilty and

> blaming herself for her son's hearing loss. She asked if I wouldn't consider

> calling her. That perhaps she is just too overwhelmed to make the first move

> to discuss this with someone. I do know her name and number. My question is

> should I call her or wait until she is ready to talk to someone? I only to

> well remember those awful first months and the guilt. It was as if I was

> mourning for the loss of what I had hoped and dreamed for my son. I now

> understand the only thing Adam can't do is hear. What do you veteran parents

> think? Any ideas would be appreciated.

> Take care,

> Nikki

>

> > 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]

I second that, 100 %.

Colleen

brogers wrote:

>

>

> >mourning for the loss of what I had hoped and dreamed for my son. I now

> >understand the only thing Adam can't do is hear. What do you veteran

> parents

> >think? Any ideas would be appreciated.

> >Take care,

> >Nikki

>

> Call her. She is too overwhelmed. If you reach out to her she might be

> able to know that it is normal to grieve her loss and blame herself but

> there are lots worse things than not being able to hear.

>

> Barb

>

> > 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]

At 02:56 PM 10/26/99 -0400, you wrote:

>From: NPrisk@...

>

>Thanks to all who wrote with tips on how to help Adam get ready for surgery.

>We can visit the hospital and get a short tour the day before the surgery so

>hopefully that will help him and me a little.

>I have a question to ask. There is a little baby in our community who was

>diagnosed at birth with a hearing loss they are now finding out it is severe

>to profound. My husband knows the father of the baby casually through some

>fire department activities that they are both involved in. Many of our

>friends also know this couple. They have given them our phone number and

>our audiologist has also told them to contact us (with our permission she has

>given them our number and some basic information on Adam). Yesterday a

>mutual friend told me the Mom is having an awful time with feeling guilty and

>blaming herself for her son's hearing loss. She asked if I wouldn't consider

>calling her. That perhaps she is just too overwhelmed to make the first move

>to discuss this with someone. I do know her name and number. My question is

>should I call her or wait until she is ready to talk to someone?

I also remember it well, and if this one couple we had never met hadn't

called us right away, we may have wasted who knows how much time taking

action. I am forever in their debt for sticking their neck out to make that

call. They invited us over to our house for pizza and beer and to meet

their children. Whether we were ready for it or not didn't really matter in

the long run, it got things started. This was about 10 days after diagnosis.

Chris

<< Christofer deHahn..................Manager, EDA Systems and Test >>

<< Quantum Corporation...........Shrewsbury, Massachusetts, USA >>

[Guest guest]

Debra Rabideau wrote:

>

> If this new mom, needs more people to talk to, I would be happy to call her

> myself. If I can help another Mom, the way I was helped I will feel like I

> have done my lifes' work here on earth.

>

> Please Email Privately if you want my phone number.

>

> Thanks,

> Debbie

> 14 Months

>

> Nikki,

Likewise for me, I would be more than happy to take to her also. I didn't think

of that. But too many in the beginning may also be overwhelming but you could

give her

the option. Just so she know people care and that you cared enough to mention

it too us. Just curious what area do they live in.

Take Care

Colleen.

>