Re: Grief

[Guest guest]

I too have been exactly where you are...child critically ill for years, feeding

tube, nissen, open heart surgery at 6, massive developmental delays, language

delays and their associated behavioral problems, progressive hearing loss,

anaphylactic food allergies to everything, environmental, etc., depression from

so much trauma at so young an age. What do I do...I cry, and cry and cry and

occasionally throw things; write lots of emails; call my mother; create/write

support groups; seek counseling; file complaints; testify in Senate hearings;

flounder around and feel totally lost; never sleep; call every world reknowned

medical expert/ audiologist/ engineer who might have an answer to help my child;

have anxiety/panic attacks; wake up at night running to find the box underground

that my child has been buried in because I must find the answer and find them

before it's too late and they die...and then realize that it's a dream

reflecting my panic over not having the answers, or not get

ting them fast enough; suffer from stress related illnesses. I give up and

wonder whether life is worth staying alive for and I get angry with God because

it's not fair for someone so innocent to have been through so much pain and that

that pain has been made so much worse by employees of the school system who were

incompetent, apathetic and downright evil who have both unintentionally and

intentionally caused so much unnecessary additional pain to my child and to us,

his parents.When I'm in the pits and feel like I can't live this kind of life

anymore, a little light dawns and offers me a path to take and I pick myself up,

realize that life IS worth living, I pray to a higher power, I try to breath

away the chest pains from the panic attacks, take extra vitamin B's to stay

calm, and start documenting, writing, calling people who can make things change.

Then I'm energized again...still exhausted but ready to battle. I take

leadership roles in hearing loss organizations, advocat

e for other children with hearing loss/developmental delays and spend ALOT of

time trying to locate the top specialists I need to help my son and us. I

research the internet constantly for information on hearing loss, the latest

technology, philosophy's in education, how the technology works.

But the biggest way I handle it is to try to find something special to do with

my family to forget about it and to set up opportunities for my son to forget

his hearing loss. We began to take our son to the Opera the minute he could read

well enough to read the subtitles...luckily, god gave him the gift of reading

before age 2. We started attending Japanese Anime conventions and getting into

anime because all of their movies/dvds were subtitled and hearing didn't matter

because the dialogue was in Japanese anyway. We offered him drum lessons, music

he could hear.

We also have a diabetic daughter who developed diabetes during the time that

had emergency open heart surgery and was recuperating. He was always the

focus of our life problems until that happened. She became so sick while going

to Cue Camp with him while he was still recuperating from open heart surgery,

that she was vomiting and in ketosis before we realized how sick she was. For

the last 9 years, her needs and extreme problems have overridden many of his

medical and hearing loss needs. She's now away from home as she's 21 and we

have refocused on our son's needs again, but we were always juggling. Our

marriage has managed to survive somehow.. And our kids have survived to date.

I still have alot of reasons to cry, but now, more reasons to laugh.

I look at my son, see how far he has come and how far he still has to go, but I

listen to my mother who has always said that he WILL make it, maybe just a

little later than others. She has always said, that everything will come AT HIS

OWN TIME. And it always has! There are days when he comes home completely

demoralized about his inability to socialize due to his hearing loss and suffers

so greatly from the frustrations of being an auditory learner in a hearing

world. He gets angry at his life and his massive allergies. Depending on my

mood, I either give him a pep talk or I get upset with him and cry...trying to

keep it for when he doesn't see, but sometimes letting him see because he needs

to know I care. Either way, I end up making him fell better with his lot in

life and he smiles, that deep, loving, content smile of his. Then he comes home

telling me that his marching band where he is a key drummer, just won first

place, that kids in his class said he was the nicest, tha

t teachers complimented him for his knowledge and hard work, that he and his

band are going to record a cd this weekend, that he's going to try out for the

Baltimore Ravens marching band, and he's beaming...my husband and I are

beaming....we call my parents, and they are beaming...We watch him play in a

concert, play in a parade, play the guitar, play the drums, get A's in a college

level Japanese class at age 12/13, and we smile and know it will be okay.

It's a yoyo kind of life. People say, " Gee, I don't know how you do it! You

must be so strong! I couldn't handle this like you do! " Well, what they don't

realize is that you either survive and fight or you give up. You don't have any

choice but to fight as you love your child more than anything in the world. So

you pick yourself up and keep going..no matter what. You'll do lots of stuff

wrong, but most often, you'll do more that's right. Maybe not perfect, but

still much better than doing nothing.

What will pick you up the best right now is to take Jill's great advice.

Immediately write the school that you will hire your own audiologist to come in

and provide the inservice training and support and then bill them.

Simultaneously, make arrangements to do so if there is any way you can afford

it. As she said, you are not qualified to do the inservice and don't need the

extra stress. It's a really easy thing to do for someone who is experienced in

the field. I used a similar strategy when the County refused to provide a CART

reporter for on a school field trip and when Towson University refused to

provide a CART reporter for a special drumming clinic they were sponsoring. It

was going to cost me $800 each for a day's worth, but I already had contracted

with them and advised them that I would file a complaint under IDEA and under

the Americans with Disaiblities Act AND the Rehab Act of 1973, they both caved

immediately and had a CART reporter hired within an hour. It

would have been a strain financially, but I would have recouped the monies from

them ultimately either through the complaint process or through litigation. I

would find out who the attorneys for the Special Education Department are, and

immediately fax them such a letter.

Hang in there! I'm battling Verizon trying to get new cel phones activated to

no avail after they cancelled our old ones when they shouldn't have, and of

course there's a tremendous glitch...while I'm on a mandatory hold I can't hang

up on, I see on the caller ID that the school is calling me, my husband is

calling me frantically and I don't know what's wrong...the school can't figure

out who was calling me and my husband is off in an area where I can't reach him

again. Arrghh. So, as you see, life goes on as usual and I don't have any time

to dwell right now on hearing loss and its implications.

-------------- Original message --------------

Ok, so when it finally hits you that your kid can't hear like the others, and

that it is so much work for him to understand anything you say, that he hears

" music park " instead of " amusement park " , and " honkey bars " instead of " monkey

bars " , that he doesn't know what an orange is or that all this time you've been

talking too fast for him to keep up with the conversation, when it finally hits

big time that this is permanent and isn't easy, what do you do with the

feelings? Sit here and cry? I just never had time to grieve about his heart; it

was either deal with it or he'd die, and after all that we had gone through with

that, we were just so happy to have him alive. But this is so different. I don't

know what else to say. What do you do with the grief? What did you guys do with

it and how did you get through to the other side?

Trish

Visit Trish and Bobby's Marathon website at

http://www.firstgiving.com/bobbymarathon

[Guest guest]

>

<< I don't know what else to say. What do you do with the grief? What

did you guys do with it and how did you get through to the other side?>>

Hi, Trish.

I've not been posting very often but I saw this and just wanted to

reach out to you. In the beginning (2.5 years ago), I was just

frantically trying to learn everything I could so that I didn't have

time to cry or to really realize what this meant for Emmett or our

family. I didn't realize I was grieving because I was just doing what

I've always done ... being efficient, learning what I could, being

strong.

Eventually, I made my way to a counselor and that helped tremendously.

Do I still feel guilty? Yes. Do I still cry? Yes. But I don't do either

of those things on a daily basis anymore. I'm still sad about it and

I've allowed myself some really good cries. When I have those days, I

make sure I hold it together in front of my kids. Our daughter grieves

every now and then too, but we all realize that Emmett doesn't know

what typical hearing is so it doesn't phase him in the least that he

has to keep asking people to repeat themselves. We're grieving for what

we think he doesn't have.

I realize now that I have to grieve from time to time because it is sad

to watch him struggling. But he's a strong kid and really resiliant,

like all kids who face adversity. He's going to be just fine.

Also, I read some Luterman, the titles of his books I cannot

remember at the moment. But the man just gets it like no one else seems

to except for other parents of D/HOH kids. My husband and I saw him

speak last year. It was really wonderful for both of us.

Feel like I'm rambling ... it will get better. Do what it is you need

to do for you. You need to take care of yourself in order to take care

of your kids. But have your grief. That's the most important thing I've

learned from the Luterman books ... it's OK to be sad and to think

sometimes that this just sucks (pardon the language).

Hugs to you.

johanna

[Guest guest]

>

> Ok, so when it finally hits you that your kid can't hear like the

others, and that it is so much work for him to understand anything

you say, that he hears " music park " instead of " amusement park " ,

and " honkey bars " instead of " monkey bars " , that he doesn't know what

an orange is or that all this time you've been talking too fast for

him to keep up with the conversation, when it finally hits big time

that this is permanent and isn't easy, what do you do with the

feelings? Sit here and cry? I just never had time to grieve about

his heart; it was either deal with it or he'd die, and after all that

we had gone through with that, we were just so happy to have him

alive. But this is so different. I don't know what else to say.

What do you do with the grief? What did you guys do with it and how

did you get through to the other side?

>

> Trish

>

> Visit Trish and Bobby's Marathon website at

> http://www.firstgiving.com/bobbymarathon

>

>

>

[Guest guest]

Honestly - I don't know what I did. Ask anyone on here - I was a mess in the

begining. It sucked and was frustrating and I just didn't know what to do with

all the information. In fact, I didn't even want all the information!!! But

now - I'm at a better place. How I got here? No idea. Time maybe? But it does

get easier and those feelings of grief do go away. The hearing loss isn't so

much our entire life anymore. It has kind of fallen to the background. I don't

focus on it so much. I know its there but it just seems natural now.

Trish Whitehouse chester2001@...> wrote:

Ok, so when it finally hits you that your kid can't hear like the others, and

that it is so much work for him to understand anything you say, that he hears

" music park " instead of " amusement park " , and " honkey bars " instead of " monkey

bars " , that he doesn't know what an orange is or that all this time you've been

talking too fast for him to keep up with the conversation, when it finally hits

big time that this is permanent and isn't easy, what do you do with the

feelings? Sit here and cry? I just never had time to grieve about his heart; it

was either deal with it or he'd die, and after all that we had gone through with

that, we were just so happy to have him alive. But this is so different. I don't

know what else to say. What do you do with the grief? What did you guys do with

it and how did you get through to the other side?

Trish

Visit Trish and Bobby's Marathon website at

http://www.firstgiving.com/bobbymarathon

[Guest guest]

I cried myself to sleep the first night after we found out that it was

‘true’...then we moved on. It is tough, not doubt about it. But these kids

will amaze you with their perseverance and willingness to get on with their

lives. I always remember what ’s first teacher told her classmates

when they questioned the hearing aides...She asked them, “Why do I wear

glasses?”...answer “to help you see”...”Then why does wear hearing

aides? They help her hear”...

Jan

Mom to (12 – moderate in one ear, severe in the other – aided – and

doing her first ‘read through’ tonight for a community play)... (15

– hates homework and would rather be riding her horse)...and (18 –

enjoying her freshman year of college WAY TOO MUCH – you know there are boys

there don’t you?)

_____

From: Listen-Up [mailto:Listen-Up ] On Behalf

Of Trish Whitehouse

Sent: Wednesday, September 13, 2006 9:28 AM

To: Listen-Up

Subject: Grief

Ok, so when it finally hits you that your kid can't hear like the others,

and that it is so much work for him to understand anything you say, that he

hears " music park " instead of " amusement park " , and " honkey bars " instead of

" monkey bars " , that he doesn't know what an orange is or that all this time

you've been talking too fast for him to keep up with the conversation, when

it finally hits big time that this is permanent and isn't easy, what do you

do with the feelings? Sit here and cry? I just never had time to grieve

about his heart; it was either deal with it or he'd die, and after all that

we had gone through with that, we were just so happy to have him alive. But

this is so different. I don't know what else to say. What do you do with the

grief? What did you guys do with it and how did you get through to the other

side?

Trish

Visit Trish and Bobby's Marathon website at

HYPERLINK

" http://www.firstgiving.com/bobbymarathonhttp://www.firstgiv-ing.com/bobbym

ar-athon

[Guest guest]

I think we were relieved when we found out...it explained so much of

's speech delay, singing songs, etc...Now, 6 months into HA's he has

favorite songs on the radio he sings along with and actually makes up

songs for just about everything...and uses new words every day and has

become a much cooler kid...yea I feel guilty sometimes that we didn't

figure it out sooner...I just thought he was ignoring me...but his late

speech was justified b/c he wasn't around other kids...and as soon as he

was (and started reading lips) he started talking...and growing the

vocab...

But in the end, we know what the deal is now and give him every

opportunity to improve on the skills he has and develop new ones...

No need to dwell--the energy is better spent helping them grow...

Grief

Ok, so when it finally hits you that your kid can't hear like the

others, and that it is so much work for him to understand anything you

say, that he hears " music park " instead of " amusement park " , and " honkey

bars " instead of " monkey bars " , that he doesn't know what an orange is

or that all this time you've been talking too fast for him to keep up

with the conversation, when it finally hits big time that this is

permanent and isn't easy, what do you do with the feelings? Sit here and

cry? I just never had time to grieve about his heart; it was either deal

with it or he'd die, and after all that we had gone through with that,

we were just so happy to have him alive. But this is so different. I

don't know what else to say. What do you do with the grief? What did you

guys do with it and how did you get through to the other side?

Trish

Visit Trish and Bobby's Marathon website at HYPERLINK

" http://www.firstgiving.com/bobbymarathonhttp://www.firstgiv-ing.com/bo

bbym

ar-athon

[Guest guest]

First you deal with things (like I did), but when there's nothing immediate

to deal with, you cry - at least I did. Believe it or not, you've already

taken the best step I ever took by joining an online discussion group of

other parents who understand what you're going through and who can tell you

there is life (and a happy child)after diagnosis. Then you read

Welcome to Holland!

http://www.listen-up.org/edu/holland.htm

Hang in there. JD is now 19 years old (egads, he'll be 20 next month!) and I

don't know how we ever got through it all, but looking forward for him and

his future, the sky's the limit. I've spent my life making sure that doors

are left open for him, and now we're at the point where I'm watching him

decide which doors he's going to go through, and which ones he's going to

close himself. It's been an interesting journey to this point, but I'm sure

proud of him and the young man he's become.

-Kay

Kay

kay@...

The Listen-Up Web

http://www.listen-up.org

[Guest guest]

I don't think you can ever get through to the other side. Things will

always come up that make you wish your child could hear...sometimes you do

put it in the background, or maybe even the majority of the time, but there

are times still even though our daughter turns 8 next week that I still feel

like crying. Sometimes it is when she can't keep up with the conversation

and instead of taking the time to help her understand I just tell her never

mind or it's ok don't worry about it. A few weeks ago it was when she told

us that nobody wanted to play with her on the playground. Over the past

weekend it was when my wife told me that she kept running down the field

with the soccer ball after the referee kept blowing his whistle. I feel

like this is my way of sharing her burden since she probably does not even

know just how different she is yet.

On the other hand she is just about as normal as any other kid in the

world...she talks back, argues with her brother (who is only 2 but that does

not matter to her), and likes to play video games and watch TV. I have to

say one of the biggest things that makes me feel better about her being deaf

is that every time I turn on the news or go to a hospital I see handfuls of

people who are so much worse off and I thank God that the only burden she

has is deafness.

Tim

>

>Reply-To: Listen-Up

>To: Listen-Up

>Subject: Re: Grief

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>

>Honestly - I don't know what I did. Ask anyone on here - I was a mess in

>the begining. It sucked and was frustrating and I just didn't know what to

>do with all the information. In fact, I didn't even want all the

>information!!! But now - I'm at a better place. How I got here? No idea.

>Time maybe? But it does get easier and those feelings of grief do go away.

> The hearing loss isn't so much our entire life anymore. It has kind of

>fallen to the background. I don't focus on it so much. I know its there

>but it just seems natural now.

>

> Trish Whitehouse chester2001@...> wrote:

> Ok, so when it finally hits you that your kid can't hear like the

>others, and that it is so much work for him to understand anything you say,

>that he hears " music park " instead of " amusement park " , and " honkey bars "

>instead of " monkey bars " , that he doesn't know what an orange is or that

>all this time you've been talking too fast for him to keep up with the

>conversation, when it finally hits big time that this is permanent and

>isn't easy, what do you do with the feelings? Sit here and cry? I just

>never had time to grieve about his heart; it was either deal with it or

>he'd die, and after all that we had gone through with that, we were just so

>happy to have him alive. But this is so different. I don't know what else

>to say. What do you do with the grief? What did you guys do with it and how

>did you get through to the other side?

>

>Trish

>

>Visit Trish and Bobby's Marathon website at

>http://www.firstgiving.com/bobbymarathon

>

>

>