Re: Grieving

[Guest guest]

In a message dated 5/6/2005 12:45:34 P.M. Eastern Daylight Time,

momnaudrey@... writes:

Also don't put another worry on yourself

because someone just told you that you didn't grieve correctly. You don't

need

yet another thing to figure out how to do!!

Well said.

Jill

[Guest guest]

Hi -

I can relate! You know I think I am just coming out of the anger

stage--although it may not seem so after this post:)

So much of what you wrote about feeling overwhelmed by not living up

to the ped audi standards of what you " should " be doing --i.e.,

keeping aids on, JTC course stuff, is so normal. In fact, I think

that some of the information/instructions given just don't work all

that well when dealing with very young children.

As an example, my daughter's hearing loss was identified at birth.

After meeting with an audi at the House Ear Inst. in LA, we were

given the standard Ped. Audi schpeel about how our daughter needed

to wear her BTEs during her waking hours--so simple right? Wrong!

The majority of parents with young kids I have spoken with share the

same story about how impossible it is to keep the aids on --even a

baby (e.g., my daughter was able to yank off her aids in seconds

flat at 4 1/2 months). I think there is a disconnect between the

ped audi profession and the reality of aiding small children. Today,

with more and more kids being aided early, I feel very strongly that

more needs to be done to tailor the current " One Size Fits All

Approach " in ped audi.

While the sadness part of grief seems to come and go, letting go of

the guilt part takes time. It seems to me you are on top of your

child's hearing loss and doing everything you can do. I have yet to

meet the perfect parent, which I think does not exist except in our

collective imaginations.

Best,

jennifer

> Hello:

> I have a question about Grief. Today I was in a Parent Support

Group session at our EI program and we were just talking about our

day and I started crying talking about the gap between the type of

parent I would like to be (i.e., hearing aids in all the time,

completed the Tracey course, giving my hearing child equal

attention, using more signs and verbal techniques, etc.) and the

parent I actually am (lucky if my son will keep his aids in for more

than 5 minutes without pulling them apart, etc.) The facilitator,

who is also a therapist responded that she feels that I still

haven't grieved the my son's hearing loss. After thinking about

this, I think that she may be right -- but I have no idea what to do

about that.

> Did any of you have a hard time grieving -- and how did you

finally do it? I've heard from people that the grieving comes back

sometimes when they have a tough situation with their kid.

> Thanks,

>

>

>

[Guest guest]

Grief is a tricky thing to nail down when you are talking about your

child's hearing loss. I think it comes at you in waves over time. I

don't really think anyone can fully grieve a child's loss when you

find out because there is still so much you don't know about it all.

You can grieve the loss it's self but the full scope of what it means

for you and your child really isn't discovered until you start down

the path.

I remember after I found out about my daughters profound loss. We were

having a yard sale that next week so I had some old ceramic plates in

the garage. I broke almost the entire box of plates one by one against

the side of the house. I was just mad. I was mad at everyone. I was

mad at myself for not making my baby well enough while she was in my

stomach, I was mad at my husband for not really being there and

denying she had a hearing loss. I was mad at every professional who

had ever said she was fine. And I was mad about what this meant for

her. And I was mad about what this meant for my life. It was such a

huge mess to clean up all of those plates all in my lawn..

I remember watching her sleep at night in her crib and just crying

while she slept. And then I would cry because I knew she couldn't

hear me crying..

That is how I grieved. Grief isn't something you can make yourself do.

But you can be open to grief when it finds you.

My point is. Every one grieves things differently. It comes to you

slowly over time. I was so excited after my daughter got her CI

because she could finally hear me. Only to have every person in the

grocery store - or so it seems say. what is that?ohh she cannot hear?

oh that poor darling child! That got to me.

Now I know that Allie's deafness is part of her, But it is a small

part of the whole. It doesn't mean some days I don't get overwhelmed

with 2 CI's and batteries and speech appts and preschool and doing

vocab at home and AV drills. I don't always get the things done in

the course of the day I want to do. I sometimes slip and forget to put

her CI's in the dry and store at night. I used to really feel guilty

about that but I am human. Allie is making progress and she is happy.

At the end of the day I feel good about where she is with her speech

and I feel good about what I am doing for her as a Mom. Am I done

grieving her loss. I doubt it. Just last week I listened to her sing

all of twinkle twinkle little star, and I just lost it.

I don't really know if any of this is helpful to you. But I do know

how you are feeling

Angie in Vegas

Allie 3 yrs profound SNHL

N24 12mo, 32 mo bilateral

> Hello:

> I have a question about Grief. Today I was in a Parent Support Group

> session at our EI program and we were just talking about our day and I

> started crying talking about the gap between the type of parent I would like

> to be (i.e., hearing aids in all the time, completed the Tracey course,

> giving my hearing child equal attention, using more signs and verbal

> techniques, etc.) and the parent I actually am (lucky if my son will keep

> his aids in for more than 5 minutes without pulling them apart, etc.) The

> facilitator, who is also a therapist responded that she feels that I still

> haven't grieved the my son's hearing loss. After thinking about this, I

> think that she may be right -- but I have no idea what to do about that.

> Did any of you have a hard time grieving -- and how did you finally do it?

> I've heard from people that the grieving comes back sometimes when they have

> a tough situation with their kid.

> Thanks,

>

>

>

[Guest guest]

,

I think everyone has given you great advice already.

For me, I feel like the grieving goes on to some degree all the time, and

becomes worse when you go through a transition or get out of your comfort

zone or routine - those are the times when you're forced to see your

child in a different light: different school, new friend, standardized

test, a younger child doing more than yours, etc. I struggle most with

the unknown, as our daughter's condition does not have a definite

prognosis (in addition to her hearing loss, she has microcephally - small

head - which is responsible for her delays). I always say " I don't care

how long it takes her to learn stuff, I just want someone to assure me

that she will! " . No one has stepped up to make that assurance yet - go

figure. So, some days she strings together a 7-word sentence

spontaneously or climbs the ladder at the park without falling, and I am

hopeful ... other days she refuses to use the potty or can't keep up with

our neighbor's 1 1/2 year old!, and I'm less hopeful. I cry sometimes,

but we have a lot of laughs too. I wish I could just grieve and then be

done with the whole mess, but I'm still waiting ...

Hope it helps to know that others are feeling the same as you ...

, in CO - mom to:

(5.11) - hearing, typical - can't wait to start 1st grade!

Kate (3.11) - mod/sev HAs+FM, delayed, microcephally - trying to say

" helicopter "