Re: Guilt-- our lovely companion

June 30, 2006

Oh goodness - I remember back in the day when first Tom was diagnosed

with his hearing loss, then 3 months later Sam and about my third

thought (after " I can't believe both my kids are deaf " and " How will I

ever afford/manage two sets of hearing aids? " ) was " I did this to you! "

and I felt so sad... I was told by many that " you can't feel that way "

which then made me feel guilty for feeling guilty! I then realized I

needed to accept the fact and move ahead with things. I actually did

talk with the EAP folks at work (employee assistance = shrinks!) which

was very helpful.

I really try to live in the present. Of course I feel right now that I

wish now that Tom had gotten his implant sooner than he did seeing his

fabulous progress but then I slap myself and think " but we didn't and

look how well he's doing still " and maybe it makes me appreciate what we

do have. I try very hard to not look back, unless it's helpful for me

to learn...

I think our job is parents is to feel guilty! LOL

Barbara

Parentsofdeafhoh@... wrote:

> Hi all,

> I'm working on an article that covers Mommy Guilt (and Daddy Guilt too!) and

> how we deal with it as we raise our deaf/hh kiddos.

>

> One mom defined guilt as the feeling of " I should do more. "

>

> So what brings guilt into your life? How do you deal with it?

>

> Putz

> Illinois Families for Hands & Voices

> _www.handsandvoices.org_ (http://www.handsandvoices.org/)

> _www.ilhandsandvoices.org_ (http://www.ilhandsandvoices.org/)

> Email: support@...

>

June 30, 2006

GUILT - oh that lovely word; the word that hits every single one of us

terribly in one way or another.

I feel guilt every day. I sit and talk with my daughter about her hearing

and her fears and concerns and I just want to burst into tears. I feel

guilty because I've not been properly informed as to the things we should

have been doing all this time. I feel guilty because the audiologist we are

using didn't do her job to better my daughter's hearing ability. I feel

guilty because I have to go to work every day and not be with her and help

her in the cruel world of hearing. I feel guilty that kids tease her at

camp and the counselors don't do a thing about it. Then the guilt begins to

swell even more because she is there because I have to work.

Guilt is an ongoing part of my world. How do I deal with it? I've not done

a very good job of that. I try so hard to keep a positive outlook on life

in general and think wow, technology has flourished over the years and I

thank God that we live in world we do now to where she has the aids to help

her. I've not yet figured out how to deal with the guilt and anger that

I've experienced. All I can say is some day it will get better.

Diane

Guilt-- our lovely companion

> Hi all,

> I'm working on an article that covers Mommy Guilt (and Daddy Guilt too!)

and

> how we deal with it as we raise our deaf/hh kiddos.

>

> One mom defined guilt as the feeling of " I should do more. "

>

> So what brings guilt into your life? How do you deal with it?

>

> Putz

> Illinois Families for Hands & Voices

> _www.handsandvoices.org_ (http://www.handsandvoices.org/)

> _www.ilhandsandvoices.org_ (http://www.ilhandsandvoices.org/)

> Email: support@...

>

June 30, 2006

In a message dated 6/30/2006 5:21:27 P.M. Eastern Daylight Time,

catgb2004@... writes:

Guilt was also: when my newborn twins were crying

once, and after being alone with them for 11 hours (common), I felt

more like jumping out the window than rocking them.

I think we all have one of those moments during our kids' infancy!

Late one night, when Ian had been crying for about 6 hours straight, my

husband came downstairs to find me with my head stuck into the sink, running

cold

water over face and head. He looked very confused and asked me what I was

doing (it was winter). My answer was that I was avoiding throwing our newborn

against the living room wall. I suddenly had complete understanding of how

shaken baby syndrome occurs. I had to put him down and walk away because I

thought my head was going to explode. I had turned Ian to face me and just

screamed back at him a half inch from his face. Ian looked startled for about a

half

a second and then starting crying again.

My hubby had been great about helping with Ian, but I'd sent him off to bed

since he had work the next morning. Guess my scream had been the clue that I

was actually loosing it, huh? (sigh)

He took the baby, laid him along his forearm and walked around the room

steadily drumming his large fingers against the baby's back. Ian was asleep

within 5 minutes. I wasn't sure if I wanted to kill or kiss the man, and told

him

so. Larry laughed and told me I'd tired Ian out for him. So diplomatic, LOL

Best -- Jill

June 30, 2006

Guilt comes from my appearant lack of society-defined idealistic

maternal responses to my kids' actions! Like when I used to think it

was funny when my daughter couldn't locate where I was calling her

from (before I knew of her hearing loss)...then I found out why. Also

I am feeling guilty that maybe I did something wrong in my pregnancy

since they haven't been able to find the root cause of my twins'

hearing loss yet. {Guilt was also: when my newborn twins were crying

once, and after being alone with them for 11 hours (common), I felt

more like jumping out the window than rocking them. But that's more

of a twin issue and where more of my guilt comes from actually.}

I talk to other women and realize I am not alone. I respond

publically with these stories and it makes me feel better. That's how

I deal.

Cathy

>

> Hi all,

> I'm working on an article that covers Mommy Guilt (and Daddy Guilt

too!) and

> how we deal with it as we raise our deaf/hh kiddos.

>

> One mom defined guilt as the feeling of " I should do more. "

>

> So what brings guilt into your life? How do you deal with it?

>

> Putz

> Illinois Families for Hands & Voices

> _www.handsandvoices.org_ (http://www.handsandvoices.org/)

> _www.ilhandsandvoices.org_ (http://www.ilhandsandvoices.org/)

> Email: support@...

>

June 30, 2006

Thanks for asking, I am sure this is a loaded topic.

Guilt. I wish I could say that I always feel I did the best I could have at the

time, but emotionally the guilt creeps up and before I know it I feel awful.

I feel guilty that I didn't catch this hearing loss for 5 whole years. I told

people, and they didn't listen to me, so I thought I mist be crazy. After all

they are the " experts " , right? Never again will I leave such major decisions to

someone else. I feel so guilty that if I had only known the hearing loss

earlier, then when Bobby had his last surgery I could have bypassed the meds for

the renal failure and gone right to dialysis, which we had to do anyway, and

maybe saved some more of his hearing. I bet it (his hearing) was pretty decent

before that last surgery.

I feel guilty that I am not the kind of person who just stands up to others

easily, and instead I become easily intimidated and back down. I am learning as

I go along, but authority scares me (from childhood) so it is extremely

difficult to go through all the conflicts confrontations I have to go through to

get the services I know he needs. I will get there, even if it is all by email

and in writing, so that I don't have to directly confront these idiots. (Oops,

did I say that?) actually, that is one of the gifts of having a special needs

son, I HAVE to learn to grow up and say my truth even everyone doesn't wind up

loving me for it. They'll all be gone someday, but I'll always be Bobby's

mother.

I feel guilty that I get so impatient with Bobby when he needs me to repeat ad

nauseum, that I have to stop all that I am doing to really listen to him when he

talks, that he takes so long to write because his fine motor skills are so poor,

and that basically it is a lot of work to be with him at times. God, I want to

want to be with him, but sometimes I just have to get away and let someone else

deal with it all. It scares me to see how much slower he is than my other three

kids and sometimes I just can't have it in my face for very long.

But having a son who was so critical and near death so many times also has given

me a different perspective in that even though I know things could have been

done differently, this is " just " a hearing loss and he is walking, talking,

breathing on his own, no more G tube (He just wolfed down an ice cream cone at

the local dairy which was, only 3 years ago, totally impossible) so things could

be a lot worse. He's alive. I'll work on the rest because underneath it all, I

feel so fortunate that I have any of these issues to work on at all.

So, forget the guilt, I say let's have a party!

Trish

June 30, 2006

asked:

So what brings guilt into your life? How do you deal with it?

**

Oh, there's so many things. :-)

The fact that we didn't know that had no hearing in one ear for 5.5

years still just tears me up - and it probably shouldn't, but those feeling

usually come back whenever someone incredulously asks something along the

lines of: " But how couldn't you know? "

Now the guilt comes from wondering if I'm balancing the need to educate

caregivers and teachers about what skills they'll need to deal with

with the need to make sure that they see him as a kid with a hearing

impairment (as opposed to a hearing impairment with a kid). And then

there's the ever-present wondering of whether we're doing the right thing

with *anything* that we're doing as parents for him (and for his brother).

For me, the best way to deal is to find other parents in the same boat as we

are, which is why I'm so thankful that I stumbled onto this group. Seeing

someone write a post that sounds like it could have come out of my own

keyboard is cathartic in a way - it lets you know that you're not alone.

Kris

Mom to (almost 8, Profound/Complete SNL, Left Ear) and Ethan (6,

hearing)

July 3, 2006

In a message dated 6/30/2006 9:57:44 P.M. Central Standard Time,

eskilvr@... writes:

The fact that we didn't know that had no hearing in one ear for 5.5

years still just tears me up - and it probably shouldn't, but those feeling

usually come back whenever someone incredulously asks something along the

lines of: " But how couldn't you know? "

Kris,

I've gone through this. We took a long time to get diagnosed and

totally missed the boat with even though he lost his hearing the same

time

that did. was older (4 years old) and was able to tell us she

couldn't hear and just got lost in the shuffle when we were dealing

with her. It took him over two years to catch up on speech and language and I

beat myself up for a good two years. I've somehow learned to let it all go

and just enjoy the kids as they are today. An occasional margarita helps.

July 3, 2006

In a message dated 6/30/2006 4:21:27 P.M. Central Standard Time,

catgb2004@... writes:

Also

I am feeling guilty that maybe I did something wrong in my pregnancy

since they haven't been able to find the root cause of my twins'

hearing loss yet.

Cathy,

This seems to be the most common response that I've come across-- we women

sure blame ourselves a lot!

July 3, 2006

In a message dated 7/3/2006 9:58:23 A.M. Pacific Daylight Time,

bkmackellar@... writes:

Guilt? I signed the consent form for the protocol that caused Elias's

hearing loss. It said right on the paperwork that hearing loss is a major

aftereffect of the treatment, and the oncologist carefully repeated that

information to us. Do I feel guilty? NO! On that day, Dec 23, 2003, Elias

was endstage, with probably only a few more days left. Today, July 3 2006,

he is still with us, and is downstairs running around with some Legos.

You are going to make me cry!! That is exactly what I tell myself when I am

starting to feel that " its my fault " pull... would I rather have a very ill

or dead baby or one that may not hear perfectly? Definitely take my healthy

happy baby that needs hearing aids any day over losing him!

Shanna

July 3, 2006

In a message dated 7/3/2006 9:52:24 A.M. Eastern Daylight Time,

cherwolmo@... writes:

My parents didn't discover I had almost no hearing in one ear till a

few months after I turned 5 at the Kindergarten hearing screening.

And Ian faked his way through the school screening because the nurse looked

up every time she played a tone, so he just raised his hand -- always his left

one. So the nurse simply thought he was being stubborn about which hand to

raise, never realizing he didn't hear the tones in his right hear.

No one has ever asked me " how could you not know " because Ian speaks so

clearly, the assumption is that his loss is less than it really is. In fact,

family members have accused me of trying to make it out to be worse than it

really is. Which actually helped me with the mommy-guilt, because it reinforced

the fact that so many other people (including doctors) missed it, not just me.

Jill

July 3, 2006

>

> In a message dated 6/30/2006 9:57:44 P.M. Central Standard Time,

> eskilvr@... writes:

>

> The fact that we didn't know that had no hearing in one ear

for 5.5

> years still just tears me up - and it probably shouldn't, but those

feeling

> usually come back whenever someone incredulously asks something

along the

> lines of: " But how couldn't you know? "

>

My parents didn't discover I had almost no hearing in one ear till a

few months after I turned 5 at the Kindergarten hearing screening. I

think around 5 years or so is the average age that parents find out

about a unilateral loss.

July 3, 2006

Guilt? I signed the consent form for the protocol that caused Elias's

hearing loss. It said right on the paperwork that hearing loss is a major

aftereffect of the treatment, and the oncologist carefully repeated that

information to us. Do I feel guilty? NO! On that day, Dec 23, 2003, Elias

was endstage, with probably only a few more days left. Today, July 3 2006,

he is still with us, and is downstairs running around with some Legos.

Bonnie

>

> So, forget the guilt, I say let's have a party!

>

> Trish

>

> [

>

July 3, 2006

Trish,

I read this part of your post and remembered a line from a poem that Erma

Bombeck had written about being the mother of a special needs child. " If she

can't separate herself from the child occasionally, she will never survive " .

Here is the link to the whole poem

http://www.our-kids.org/Archives/Special_mother.html, but beware, it may make

you cry.

I too wanted to spend all sorts of time with , thinking that if I was

away from her that she wouldn't be getting all that I could give her language

wise. But I was burning myself out because at the same time I had a newborn to

deal with. If I left, even to go to the store alone, I felt guilty for wanting

that time alone. This poem was forwarded to me from someone on another list,

but it was like it was talking to just me. After that I realized that it was ok

to take time to be by myself. That I could go and visit with friends and not

feel that I was failing .

Being a mother is hard and demanding enough, but when there are additional

things to worry about, it makes it that much more difficult.

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

Trish Whitehouse chester2001@...> wrote:

God, I want to want to be with him, but sometimes I just have to get away and

let someone else deal with it all.

Some men see things as they are and ask why. Others dream things that never were

and ask why not. G.B Shaw

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

Want to be your own boss? Learn how on Yahoo! Small Business.

July 3, 2006

In a message dated 7/3/2006 6:31:06 P.M. Eastern Daylight Time,

saraandchadd@... writes:

So maybe I shouldn't have answered this question - because I haven't quiet

figured it all out yet.....

But how do I deal? I don't - hence, the guilt.

But you are dealing. Slowly putting it together a day at a time.

I loved your post. I could have written something very similar at one point

and reading it made me smile and tear up as well.

At times I've been convinced that I did something very bad in a past life

and the fates are having a great laugh at my expense. And at other times, when I

look at the " almost was " and " could have been " things, I think we must have

a guardian angel hanging around someplace very close. Which one it was

depended on what kind of day i was having.

And I don't think you should feel guilty for writing that or for hitting the

send button. I think that there are a lot of people here (and elsewhere) who

could have easily written this at some point and reading your post helps

other realize they're not crazy or alone in this. And by just acknowledging

that

all that is happening to/within you, you're dealing with it.

How's that for an annoyingly pollyanna-ish pep talk? LOL

I send you big hugs.

Jill

July 3, 2006

While listening to an Audiology professor lecture on in my Auditory

dysfunction class he breezed over that 50% of children with hearing loss

have no known cause for their loss.

50%. I went home that day and stuck it on my fridge. Just my own reminder to

stop wondering what I did wrong while making my baby. It took a while to let

go of that. The 50% note is still on my fridge....

Angie

>

> Trish,

> I read this part of your post and remembered a line from a poem that Erma

> Bombeck had written about being the mother of a special needs child. " If she

> can't separate herself from the child occasionally, she will never survive " .

> Here is the link to the whole poem

> http://www.our-kids.org/Archives/Special_mother.html, but beware, it may

> make you cry.

>

> I too wanted to spend all sorts of time with , thinking that if I

> was away from her that she wouldn't be getting all that I could give her

> language wise. But I was burning myself out because at the same time I had a

> newborn to deal with. If I left, even to go to the store alone, I felt

> guilty for wanting that time alone. This poem was forwarded to me from

> someone on another list, but it was like it was talking to just me. After

> that I realized that it was ok to take time to be by myself. That I could go

> and visit with friends and not feel that I was failing .

>

> Being a mother is hard and demanding enough, but when there are additional

> things to worry about, it makes it that much more difficult.

>

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

>

> Trish Whitehouse chester2001@... >

> wrote:

> God, I want to want to be with him, but sometimes I just have to get away

> and let someone else deal with it all.

>

> Some men see things as they are and ask why. Others dream things that

> never were and ask why not. G.B Shaw

>

> ---------------------------------

> Want to be your own boss? Learn how on Yahoo! Small Business.

>

July 3, 2006

Sheesh - how can I explain my guilt when I don't understand it myself.

With Hannah I feel guilty every day of my life. I feel guilty that I didn't

see the signs before she was four. I feel guilty that I didn't listen the first

time someone saw it too. I feel guilty that I didn't stand up to those that

didn't see it. I'm angry and hurt and sad and pissed off at the world, at

myself, and sometimes at her. I don't understand why me...but it isn't

me....its her. Then I feel guilty on a whole different level...for being sad

for myself. I'm angry at the world because they don't get it, they don't see

her for who she truely is. They see her as broken or impaired, they see her

aids and not her face, they see her delayed speech and not the joke she is

telling. Then...I feel guilty....because sometimes I see only those things too.

I feel guilty when I get fed up with having to raise my voice to her, when she

asks me for the hundreth time " what? " . I feel guilty for not being selfless and

patient. I feel guilty for feeling like I'm not doing

enough - that I'm missing opportunities, that she'll suffer....because of me.

I feel guilty because my first thoughts are all the things that she " won't do "

and not all the things she will. Then I feel guilty for thinking she's limited

and blame myself even more because those feelings will only negatively affect

her - not me.

When it comes to Jake....I still feel guilty for feeling all those

things...but not because I feel them about him....but because I still feel them

about hannah. I look at him and I hate myself for all the things I feel like

I'm doing for him that I didn't do for Hannah. I look at him and I feel guilt

for feeling more open to his hearing impairment even though those emotions are

still raw when it comes to Hannah. THEN I feel guilty for feeling like I'm

treating them both differently. I feel guilty when I look at him and all I

think is wow - they're really noticable - maybe I should grow his hair long?

And then on most days I look around me and feel guilty for feeling guilty. I

give myself the old pep talk about how wonderful they are and how lucky I am to

be given them. Then hannah says " what? " and I want to bang my head through the

windshield and then again I feel guilty for not having that patience.

At night when I put them to bed and check on them for the 20th time that night

I feel guilty for once again failing at the day. Once again not conquering

those feelings of " guilt " , once again not being patient and selfless, once again

just not doing the right thing.

So maybe I shouldn't have answered this question - because I haven't quiet

figured it all out yet.....

But how do I deal? I don't - hence, the guilt.

How has it changed me? Man I look back to who I was 6 years ago and am

shocked by how completely different of a person I am. And lets face it - I'm

pretty shocked that I'm an adult! Oh and then of course....here comes the

guilt.....I feel guilty because I think back to those depressing moments when I

was 16 or 17 and my boyfriend broke up with me and I though " life sucks " or when

my mother wouldn't let me use the car and I thought " ugh, does it get any

worse " . AND THEN I feel guilt because I think karma sure does have one heck of

a bite and my rump hurts. Did i do this? Did my thoughts change my future?

Because not getting the car or a boyfriend breaking up with her will most

probably be very far down on the list of hannah and jakes's " this sucks "

moments. Am i being taught a lesson?

Life is all about learning right? the experience. So what the heck am I

suppose to bring away from this? Because if some " higher being " did this to

teach me a lesson.....well that is just mean because in the long run it won't

hurt me, it will hurt them. Oh jeez....there I go again. Feeling guilty

because I think they are " hurting " . Aren't i suppose to only think positive

thoughts about this? They can be anything or anyone they want to be? They do

whatever they wish? Right?

If i had to draw a picture of guilt it would be a shell of myself with my

insides in bright red and orange - all mixed and jumbled. And my body would be

contorted in a cirlcle, flying high up in the sky. Because that's what guilt

is. It doesn't make sense, it isn't rational, its a never ending cycle of

feeling guilty for feeling guilty. And when you try to explain it you feel like

you've been taking some serious drugs or something because you sound all jumbled

and don't make much sense. And then you think that you are alone. The world is

still beneath you, where everyone has a handle on their thoughts - but you're

the only one.

Guilt sucks and I swear it is the most evil thing about being a mother of a

" SN " child. I could deal with all of their issues a thousand times over. I

could deal with not having " me " time. But I simply can not deal with feeling

guilty about wanting " me " time, or for feeling like sometimes I wish things

weren't this way.

Crap - I feel guilty just for writing this.

__________________________________________________

July 3, 2006

Sara,

I feel guilty a lot for many things. It is a very aggravating emotion. I

felt guilt over Sydney's hearing loss and not noticing it for 3 1/2 yrs.,

but I felt guilt long before Sydney ever entered my world. I feel guilty

when I don't go see my grandmother enough. I feel guilty that I have more

material wealth than my siblings. I feel guilty that I have a nice kitchen

and other things my mother would so love to have. I feel guilty when we

don't buy certain things for the kids, I feel guilty when we do buy the

things . . . I wonder often if I'm a good enough wife, mother, daughter,

granddaughter, sister, aunt, friend, person . . .

I personally don't believe in karma and God punishing us for our younger

life. Even if I did, I wouldn't understand it because I was a pretty darn

good kid, and I don't remember complaining about anything.

You aren't the oldest born, are you? I think a lot of us firstborns

especially feel SO responsible for everything, and guilt comes with that.

Just wondering.

I wish I knew some magic words to tell you that would help. You are

definitely not alone, though, lady. Heck no! There are lots of us

guilt-wallowers out there. We just need to pray, stay busy, immerse

ourselves in positive things, hang out with upbeat people, spend lots of fun

time with our kids . . . and go to bed feeling good that something went

better that day. We are all imperfect humans, and it's tough feeling

" normal " . . . but other people are at home wondering if they're normal,

too. We don't know what goes on behind closed doors and in others' minds,

but I'm sure we're all very similar.

Smile! Hugs,

Robin in NC

>

> Sheesh - how can I explain my guilt when I don't understand it myself.

>

> With Hannah I feel guilty every day of my life. I feel guilty that I

> didn't see the signs before she was four. I feel guilty that I didn't listen

> the first time someone saw it too. I feel guilty that I didn't stand up to

> those that didn't see it. I'm angry and hurt and sad and pissed off at the

> world, at myself, and sometimes at her. I don't understand why me...but it

> isn't me....its her. Then I feel guilty on a whole different level...for

> being sad for myself. I'm angry at the world because they don't get it, they

> don't see her for who she truely is. They see her as broken or impaired,

> they see her aids and not her face, they see her delayed speech and not the

> joke she is telling. Then...I feel guilty....because sometimes I see only

> those things too. I feel guilty when I get fed up with having to raise my

> voice to her, when she asks me for the hundreth time " what? " . I feel guilty

> for not being selfless and patient. I feel guilty for feeling like I'm not

> doing

> enough - that I'm missing opportunities, that she'll suffer....because of

> me. I feel guilty because my first thoughts are all the things that she

> " won't do " and not all the things she will. Then I feel guilty for thinking

> she's limited and blame myself even more because those feelings will only

> negatively affect her - not me.

>

> When it comes to Jake....I still feel guilty for feeling all those

> things...but not because I feel them about him....but because I still feel

> them about hannah. I look at him and I hate myself for all the things I feel

> like I'm doing for him that I didn't do for Hannah. I look at him and I feel

> guilt for feeling more open to his hearing impairment even though those

> emotions are still raw when it comes to Hannah. THEN I feel guilty for

> feeling like I'm treating them both differently. I feel guilty when I look

> at him and all I think is wow - they're really noticable - maybe I should

> grow his hair long?

>

> And then on most days I look around me and feel guilty for feeling guilty.

> I give myself the old pep talk about how wonderful they are and how lucky I

> am to be given them. Then hannah says " what? " and I want to bang my head

> through the windshield and then again I feel guilty for not having that

> patience.

>

> At night when I put them to bed and check on them for the 20th time that

> night I feel guilty for once again failing at the day. Once again not

> conquering those feelings of " guilt " , once again not being patient and

> selfless, once again just not doing the right thing.

>

> So maybe I shouldn't have answered this question - because I haven't quiet

> figured it all out yet.....

>

> But how do I deal? I don't - hence, the guilt.

>

> How has it changed me? Man I look back to who I was 6 years ago and am

> shocked by how completely different of a person I am. And lets face it - I'm

> pretty shocked that I'm an adult! Oh and then of course....here comes the

> guilt.....I feel guilty because I think back to those depressing moments

> when I was 16 or 17 and my boyfriend broke up with me and I though " life

> sucks " or when my mother wouldn't let me use the car and I thought " ugh,

> does it get any worse " . AND THEN I feel guilt because I think karma sure

> does have one heck of a bite and my rump hurts. Did i do this? Did my

> thoughts change my future? Because not getting the car or a boyfriend

> breaking up with her will most probably be very far down on the list of

> hannah and jakes's " this sucks " moments. Am i being taught a lesson?

>

> Life is all about learning right? the experience. So what the heck am I

> suppose to bring away from this? Because if some " higher being " did this to

> teach me a lesson.....well that is just mean because in the long run it

> won't hurt me, it will hurt them. Oh jeez....there I go again. Feeling

> guilty because I think they are " hurting " . Aren't i suppose to only think

> positive thoughts about this? They can be anything or anyone they want to

> be? They do whatever they wish? Right?

>

> If i had to draw a picture of guilt it would be a shell of myself with my

> insides in bright red and orange - all mixed and jumbled. And my body would

> be contorted in a cirlcle, flying high up in the sky. Because that's what

> guilt is. It doesn't make sense, it isn't rational, its a never ending cycle

> of feeling guilty for feeling guilty. And when you try to explain it you

> feel like you've been taking some serious drugs or something because you

> sound all jumbled and don't make much sense. And then you think that you are

> alone. The world is still beneath you, where everyone has a handle on their

> thoughts - but you're the only one.

>

> Guilt sucks and I swear it is the most evil thing about being a mother of

> a " SN " child. I could deal with all of their issues a thousand times over. I

> could deal with not having " me " time. But I simply can not deal with feeling

> guilty about wanting " me " time, or for feeling like sometimes I wish things

> weren't this way.

>

> Crap - I feel guilty just for writing this.

>

> __________________________________________________

>

July 4, 2006

Jill wrote: " I loved your post. I could have written something very similar

at one point and reading it made me smile and tear up as well.

At times I've been convinced that I did something very bad in a past life

and the fates are having a great laugh at my expense. And at other times,

when I

look at the " almost was " and " could have been " things, I think we must have

a guardian angel hanging around someplace very close. Which one it was

depended on what kind of day I was having.

And I don't think you should feel guilty for writing that or for hitting the

send button. I think that there are a lot of people here (and elsewhere) who

could have easily written this at some point and reading your post helps

other realize they're not crazy or alone in this. And by just acknowledging

that

all that is happening to/within you, you're dealing with it. "

I for one, could have written parts of your post, especially the part about

feeling guilty that you lose patience after having to repeat or respond to

" What? " for the zillionth time. I hate when I do this, and I look at

Bobby's eyes and the way he gets discouraged, and I want to kick myself all

the way to the nearest audiologist's office where it is obvious from tests

that he can't hear me. It says it right there on paper, yet I expect him to

hear my normal voice and get inpatient when I turn away from him or talk to

him from another room. So I know how you feel.

As far as the karma, I personally have those days where I think I must have

done something wrong, but mostly now I have taken a different perspective.

When Bobby was born, even before, really because at 22 weeks gestation, my

water broke big time (this was a rupture) and they said it would be a total

miracle if he ever made it to term, he had to fight the odds to stay alive.

At that point of the pregnancy the doctor strongly suggested that I end the

pregnancy and start over again. I just couldn't do it...at 22 wks, he was

already kicking and moving around, I just couldn't do it. So I came home

and totally expected to have to go back to the hospital in labor and have

him born alive for a minute, and then die. They all expected it too. But

it never happened. My water stopped leaking about two days after I

ruptured, and after staying on bedrest for 4 months (try that with 3 other

homeschooled kids...talk about a fun time!), he was born at 36 wks. Then

when I thought I had it made, after all, he is alive, within 6 hours he is

on a respirator and being lifestarred off to a higher level intensity

hospital for critical care. While I am still post op in a different

hospital. 2 days later I get to see him for the first time, 2 days after

that he is wired and tubed in every orifice and open patch of available skin

from open heart surgery. 14 days later, I got to bring him home to his

siblings for the first time. 3 months after that, he has his 2nd and 3rd

open heart surgery and the complications nearly kill him every day for 3

solid months. Each day in ICU I am holding on to my sanity by threads as I

watch my little boy poked, prodded, cup open, X-rayed, NG tubed, chest

tubed, hurt and hurt again. After 3 months, he is still alive and they send

him home to me a " train wreck " (because I am an RN and can " handle it " at

home, I'll do anything to get him out before he gets another infection) , on

continuous O2, continuous feeds via tube, turning purple when he cries, no

voice (paralyzed vocal cord from all the months on the respirator with that

tube jammed down his throat), and the muscle tone of a wet limp dishrag.

But he is alive and I am the happiest mother in the world. I was so

overwhelmed from the 30 doses of meds I have to give him round the clock,

and the feeds, and the therapy appts, etc that I don't even realize what a

horrible situation I am in. People pity me and stare at me everywhere I go,

yet I am on a cloud most days. 4 years later, by what I am sure is an act

of God, I am able to hand him over to an anesthesiologist again for the 10th

time, 4th open heart surgery. I convince myself that it can't happen again,

the odds are in my favor, he'll fly through this one. Post op day #3 at

midnight with about 2 hours of sleep on board for the last 36 hours, he goes

into pulmonary hypertension, can't stabilize his blood pressure, and for

three hours I am sitting across the room listening to a frantic team of

doctors and nurses trying to keep him alive. At times the " beep, beep " of

his heart monitor slow down to a barely audible sound about once every 10

seconds. He is dying and I can't do a thing about it but hold onto him

mentally and tell him he needs to stay here, that I promise that I'll give

him a fun life, that his brother and sisters at home need him, and that he

can leave if he needs to, but I swear, I'll do everything I can to raise him

in a good home with a lot of love. My husband is sitting next to me on the

hospital couch hysterical crying, mumbling something about how scared he is

and how he (Bobby) can't leave us, while he is squeezing my hand so tightly

I can't feel it anymore. Three hours later, the exhausted medical team

leaves the room because he is stable enough to leave their sight for a few

minutes, and I go over to his bed where he is swollen like a stuffed sausage

from all the meds and fluid they gave him, he is back on the respirator, he

is wired and tubed in places I didn't know even fit a tube, and he is barely

alive. Again. It hurts so much to realize what I just went through, what

he just went through, that in my denial I just say we'll be home soon, it is

over and things will get better from here.

That episode temporarily (thank God) destroyed his kidney and liver

function. In the next three days they tried to jump start his kidneys with

a diuretic, (Lasix) but it didn't work and it just sat in his system with no

way to pee it out. Lasix is ototoxic, we later find out. The kidney damage

itself is ototoxic. And the antibiotic they gave him during the surgery

when he was 3 months old was ototoxic. Strike three; there goes his

hearing.

But here's the point, and if you've stayed with me this far you're more of a

trooper than most. I can't look at Bobby without feeling this incredible

feeling of love and gratitude well up inside of me. I don't even know where

it comes from, because I've never felt this with anyone else in my life.

Even when I lose my patience and don't want to repeat what I've said one

more time, I still get this overwhelming feeling of how lucky I am. How

close I was to never having any one particular moment of the millions I have

with him throughout the day because it would have taken a second for things

to have gone drastically different. Instead of Karma working against me, I

feel so blessed to go through is life with this kind of a gift...to treasure

all the moments that are usually just regular things to any other mother,

but to me they are cause for a ticker tape parade in Manhattan. Like eating

a meal. Yesterday he ate an entire microwave pouch of mac and cheese

(they're pretty big helpings) and then went for a taco on top of that. For

a kid who was exclusively tube fed for 4 years, that is something I just

can't help but marvel at. He learned to ride a two wheeler bike just

yesterday...I tell you, I stood in the street wiping the tears from my face

all day watching him. Before this last surgery, he was always so short of

breath, so winded just walking up a flight of stairs, that he couldn't even

talk to me without taking a break first to catch his breath. I constantly

ran up the stairs for him because it would take so much to recover from

climbing the flight. He goes to the lake beach with us every day and swims

like it never bothered him. Yet after the second surgery and those 3 months

in ICU, he had such an aversion to any kind of touch and sensation that when

I tried to put him in a bath, you would have thought I was lowering him into

a tub of hot acid. He'd pull up his legs, scream his silent scream and grab

onto me like a monkey. Now he swims. I'll take it.

My point is that personally, I feel like I have been given a gift that most

people never get to experience in their lives, and I kind of have it with

the other kids, but not as much as I do with Bobby. It affects my every

interaction with him. I get excited about the littlest things, the most

common and mundane events bring me to my knees in admiration and respect for

this little hero of mine. I never imagined that a small child could teach a

46 year old woman so much. It is very humbling.

So I guess that's my sermon for this 4th of July, sorry to get carried away,

but some days even I need to be reminded that these kids are amazing and

stop at nothing. It seems to me that some souls are so evolved that they

don't need to come into this world with a perfect body, or perfect ears, or

perfect organs. They are so much above what the rest of us need that they

learn their own lessons by having to make happiness without all that we

have.

Stepping off the soapbox now and hitting the roads for a run. Because

sometimes everything isn't so rosy and running keeps me sane.

Trish

July 4, 2006