Re: So They Think They Know You

[Guest guest]

- It's good to hear you take the time to write a long post. You are in your

source of support at this website. When you hit bottom in life, you see a

mixture of reactions. It's like a barometer of measuring who your true friends

are. In the hospital you will always see someone in a worse case scenario that

helps you be grateful that things are not worse. My daughter lived in a

children's hospital over 9 years ago for 5 months. Some people will make tacky

comments and others will surprise you with words of wisdom and support. On these

web sites, you will learn more than from the doctors and will find little clues

to help you on your journey. Our life is a tapestry and only in time can you

look back to see the beauty in many situations. A good book to read is " When

Pregnancy isn't Perfect " It gives you the perspective that it isn't a fairytale

and sometimes things that we don't anticipate happen. I'll be praying for you.

Sue

Gilbert <jem_gilbert@...> wrote:

Hi everyone,

It's been a while since I've posted anything and I'm so sorry for that. It's so

crazy to find time these days; it's so crazy period. I'd like to thank everyone

again for all of your help and prayers and donations given to the IHMA so that

they could activate the PLDAF on our behalf. We were so very fortunate to find

people out there like all of you, complete strangers who've become a permanent,

extended family. There will never be words enough to express the gratitude I

feel to all of you... the only way that I can truly honor your help and Lief is

to work even harder to ensure that this sort of thing does not happen to others.

It is so very important that we safeguard and preserve the rights of our loved

ones and families and our abilities to access the treatments needed for them.

Update on Lief:

Well, she's still in the hospital. She was supposed to come home several days

ago but one of the valves on her home ventilator malfuctioned and here we are.

Since she's not brain dead :-) you can just say she didn't respond to happily to

that...elevated body temp, bp, heart rate, hyperventilation, the works.

Thankfully she was in the hospital when all went down so they were able to react

quickly. She's doing much better now but we're waiting for the DME to provide a

ventilator that the doctors believe will be appropriate for her. End tidal CO2

monitoring would be nice as well...since she clearly needs it!!! Have you ever

had the sensation of having to fight for a drink of water when you're completely

dehydrated and clearly in need of that drink of water? That's what it's like

getting a CO2 monitor here. So I've decided to abandon logic and just kick and

wail and stomp my feet. What? Bet you thought I'd been doing that all along

huh ;-)))

So now, I'm hoping to get her home in time for Christmas. This time, I'll take

pictures as soon as she comes through the door then way I'll be able to prove to

myself that she's at home.

Lief was born at 10:25am 16 weeks ago today. Minus 12 hours, her and I have

been in the hospital for 16 weeks. For several weeks now, many people have been

telling me to write everything down...as if I wasn't writing a lot in the first

place. Could I possibly write more letters...that's probably a thought that ran

through the mind of PGH's CEO daily! Poor guy...I've paused to feel sorry for

him for a nanosecond.

So today, after another stressful argument...arguments with loved ones who

simply just don't get me...I decided that I just need to accept that people

aren't going to. Most of you out there know exactly what I mean. You hear the

most outrageous things from people you though knew you. In your ears, the words

are outrageous but from their mouths, all seems perfectly normal and rational.

So I decided to do what everyone does when they have some ridiculous life

drama...write a book or more accurately, a manual. Perhaps not so much a How To

Guide but perhaps (for my numerous critics), A How Not To Guide.

Chapter One - So You Think You Know

Today I started thinking about my life a year ago. Where I was...What I was

doing...Who I was with... The only constant at this point is that whereever I

was, Oliver was there. Baby was not even in anyone's imagination at that point

and then a few weeks later, Surprise, we're Pregnant! So you think that that

would be shock enough and many of my former classmates are probably still

scratching their collective heads over that one but hey, there she was on the

ultrasound. Oh so we were told since we couldn't see didly squat!

So you're going along with your oh so normal, rational life with your oh so

normal, rational friends, money, lifestyle and then you go to sleep one night

and wake up outside of Planet Earth. Where the hell are you? Well, while you

were sleeping, you were abducted by aliens and taken to a far and distant planet

familiarly known as Welcome, You are the Parent of a Brain-Injured Child. Know

what the heck do you do...

Well, you can be angry, sad, enraged, depressed, pissed off...gee, do I seem

angry but let's face it, you're not going to have time to have feelings. So

let's move on. You can spend hours trying to get information, talk to doctors,

argue with doctors, strangle the doctors, check the parking lots to see what

sort of cars they drive and then lurk through the hospital wings with a baseball

bat augtographed by some famous home-run hitting baseball guy but you're going

to get tired at 3am so don't bother! Then you can spend countless more hours

trying to get your family members, loved ones, friends, partners to understand

how you feel, what you want, how to help you, blah, blah, blah... Do you still

have energy left?

Oh you can do what I didn't do... Wake up and accept, you're on a different

planet now. From time to time you'll remember the old planet, when you have a

few seconds to that is and that will make you sad when you have time to have

feelings, but for the most part...You will need to just get on with it and

accept that going forward, to all those normal, rational folks, You've now grown

10 heads with Medussa like hair. You'll look that way too after a few sleepless

nights, missed showers and the constant racing against the neurological

deterioration hands of time. So the first step and chapter one, will be

dedicated to Acceptance. This is not the 7 stages of grieving - you will not

have time to grieve. So just jump to Acceptance and let's be on with it.

If you never had a sense of humor, Run do not walk to the store and buy a

lifetime supply. You will desperately need it and this will be the last time

that you'll have money.

Over the next few days, weeks, months and however long it takes, I will be

working on trying to help those of you out there like myself and the countless

others that we have yet to hear of...navigate our dismal parts on this new

planet. There's hope out there in the form of HBOT, nutrients, intensive PT,

OT, RT, etc and lots of other modalities whose potential have yet to be realized

and tapped. Our problem...Money. So as it there's not enough to deal with

already, we'll also be playing the lottery in every state in every country and

whatever else it takes to raise money to help all those out there who need it.

Let's accept something else; we're going to disagree on numerous things but we

are going to have to and should work together because it is for the benefit of

each and every single one of us. There are many of you out here with years of

experience, in-depth and unparalleled insight and knowledge and just sheer guts

and tenacity - I'm pleading for all of us to combine our

unique talents and use them for the betterment of " our " good.

Over the past weeks - people who love and want to help Lief and I have told me

the following: I'm in denial; I'm selfish; I should pull the plug if I really

love my daughter; I'm being cruel, put her in a nursing home, move on with your

life, life goes on, why don't you just have another child and it goes on and on.

My initial reaction is to want to slap them. Then I remember that I'm confined

and bound to societal laws and I wind up biting my tongue instead. Most of you

probably didn't think I knew how to bite my tongue :-) You'd be truly amazed

what a human being can do for his or her child. Not those of you on this list

because you do it every day, every minute of your lives - but those back on that

normal, rational planet we all once inhabited. So They Think That They Know -

No matter how well they knew us, loved us, whatever - they stopped the night we

got abducted.

Sorry if this sounds really hokey - I'm going on too little sleep and an now

wondering if I can invest in hospital real estate, plant some flowers, hook up a

clothes drying line - maybe all the bacteria finally found a way to penetrate my

membranes. So I'm off back to the hospital to hang out with Lief till she comes

home. I'll be doing my best to get caught up on emails and get back to research

and the tasks at hand...

Thank you all again for everything and most importantly - for being here!

With Love, respect and gratitude,

Chapter Two...Julius Caesar

Mom to Lief Tynnesen Judit Takacs (severe HIE, comatose, vent-dependent)

www.babiesonline.com/babies/l/lieffund

My Lief Miracle

__________________________________________________

[Guest guest]

~

Thank you for your post. I always thought that whe as you

said " you get abducted " that family members would become the support

source. I have never thought any diffrent till my 'supportive

family' began to hate the fact that i had feelings (heavens forbide

i cried one of the times my son faced death) or that I want to stand

and fight for my child in every way possible. At that time i started

to realize that i am the only one i need to be strong for and help

my child and children through what may be ahead.

I also thought it was just my family acting odd. Your post

helped me in many ways THANK YOU again for sharing with us.

You are an awesome mom! I wish that there were more moms like

you after the abduction takes place.

Give Lief loves from our family as we think about her daily and

she is in our prayers.

~cami

>

> Hi everyone,

>

>> So today, after another stressful argument...arguments with loved

ones who simply just don't get me...I decided that I just need to

accept that people aren't going to. Most of you out there know

exactly what I mean. You hear the most outrageous things from

people you though knew you. In your ears, the words are outrageous

but from their mouths, all seems perfectly normal and rational. So

I decided to do what everyone does when they have some ridiculous

life drama...write a book or more accurately, a manual. Perhaps not

so much a How To Guide but perhaps (for my numerous critics), A How

Not To Guide.

> Over the past weeks - people who love and want to help Lief and I

have told me the following: I'm in denial; I'm selfish; I should

pull the plug if I really love my daughter; I'm being cruel, put her

in a nursing home, move on with your life, life goes on, why don't

you just have another child and it goes on and on. My initial

reaction is to want to slap them. Then I remember that I'm confined

and bound to societal laws and I wind up biting my tongue instead.

Most of you probably didn't think I knew how to bite my tongue :-)

You'd be truly amazed what a human being can do for his or her

child. Not those of you on this list because you do it every day,

every minute of your lives - but those back on that normal, rational

planet we all once inhabited. So They Think That They Know - No

matter how well they knew us, loved us, whatever - they stopped the

night we got abducted.

>

>

>

> Mom to Lief Tynnesen Judit Takacs (severe HIE, comatose, vent-

dependent)

> www.babiesonline.com/babies/l/lieffund

> My Lief Miracle

>

>

>

> __________________________________________________

>

[Guest guest]

,

We've been in denial for years. We don't want this, therefore we deny

it. Nor do we " claim it. " When someone asks if Jimmy has cp, we

instead say Jimmy has a brain-injury. We've found that if we say cp

then the other party believes there's no hope--whereas if we say

brain-injury, they continue to believe there's hope (which there

is)(which is what we want).

Regarding your other planet analogy, at some point someone will put

the essay in your hands about expecting to take a journey to Italy

but somehow you wound up in Holland instead. Most of us have seen

that one. The first time it was given to us was by a well-meaning

Early Interventionist who said she felt our pain. I read through it

and asked her what was wrong with Holland, then explained to her that

I was born in Holland (I was).

I would like to share a thought or two. In the last few months I've

come to think of parenting a brain-injured child in a new way, an

unexpected way. I've never believed that God chose Sara and I to

parent Jimmy because somehow we're more special or better parents so

we then get the difficult case. God is the Lord of Life. He doesn't

want anyone to have sickness or disease. His desire is that we seek

Him and in the process we will be cleansed and made whole--body,

mind, and spirit.

That seems impossible, but many parents here have experienced it

nonetheless, to one degree or another. We all want the most degrees

of it as possible. We all want perfect wholeness for our kids. I'm

more convinced now more than ever that this is actually achieveable.

About a year ago Jimmy was invited to a birthday party by Ben, an

older kid who also has a brain-injury. Ben said he was inviting about

ten kids over like himself and set up all kinds of adapted games for

everybody to play, with prizes. Jimmy was having a blast and Ben was

wheeling around checking on everybody to make sure they were enjoying

themselves. I asked him when he was going to play too, and he said he

wasn't, that he just loved watching " all the kids who never get

invited to birthday parties having fun. "

It was a profound experience for me. The Lord of Life commands us to

do unto others as we would have them do unto us, to love our

neighbors as ourselves, and here was this kid who was actually doing

just that on the one day of the year when he would be perfectly

justified thinking only about himself--if he wanted. But he didn't

want that for his birthday. I've since discovered that the hurt kids

instinctively and unselfishly give and help out other hurt kids. They

truly give.

Most parents of hurt kids are like that too. Maybe that's why we're all here.

It is my increasing awareness of my growing unselfishness that's made

me look at all this differently. I'm beginning to think about this in

terms of stewardship. While I'm here in this place, is there

something I can do to make things better for brain-injured children

in the future. Is there something I can do to find joy and peace

anyway in the midst of heartache? What can I learn or glean from

parenting Jimmy that I can pass on? Is there something I can learn

from him that will help me help him better?

Patience? Is it patience that I need more of? If I can become more

patient with others can God empower me more?

One thing I've learned is there is a greater amount of Planet Earth's

insanity that we have to deal with. Brain-injury is a public

business. Everyone's always in your business. The ones who poke the

most always seem to be convinced that they know more about Jimmy and

taking care of Jimmy than we do. From IEP's to doctors to teachers to

relatives to neighbors to anonymous experts in grocery stores and

shopping malls and parking lots.

For example, here is a hospital (a nonperson, not even a human being)

declaring Itself more qualified to parent a child than the mother of

the child. That's insane, but somehow in 2004 AD, that concept gets

enough traction the only way to resolve it is to go before a judge.

Another example. This is excerpted from the newpaper story

(http://www.madison.com/wsj/home/local/index.php?ntid=21506 & ntpid=5)

about Grace Kenitz:

" She's not cured, but there's been a significant improvement, " said

Dr. Yaffe, a pediatric gastroenterologist at Dean Clinic who

installed Grace's abdominal feeding tube years ago. " A hyperbaric

chamber is not yet an approved method of treating her disease.

Conventional medicine does not see (HBOT) as an advantage, but

(Kenitz) would like it to be seen as part of mainstream Western

medicine. It's seen as helping, but we need studies to know whether

this is really effective treatment. "

Now this is from the guy who has personally treated Grace. This is

the guy who knew three or four years ago that there were only four

other cases like Grace in the entire world (out of 9 or 10 billion

people). This is the guy who knew Grace wouldn't live past age two.

This is the guy who seems more upset that Grace's mom was right, and

he was wrong. This is a guy who still doesn't understand that it's

not a hyperbaric chamber that has changed Grace's DNA so that her

mitochondria is now working--it's oxygen that's been administered at

an atmospheric pressure that's greater than a normal atmospheric

pressure.

If he has another Grace Kenitz in his career, will he put her (or

him) in a hyperbaric chamber--especially since death is imminent and

nothing else will help?

Here's what he says, " It's seen as helping, but we need studies to

know whether this is really effective treatment. "

My usual self responds with 'Studies? Studies? There are five kids on

the entire planet and they'll all be dead in two years. How are you

going to do a study when it'll take you three years just to get it

funded and approved.'

Now I'm thinking, wait a minute. Let's be patient here because Dr

Yaffe's learning too. Maybe what we all need to do is first realize

and then acknowledge who designed and created our DNA, who designed

and created the mitochondria, and who designed and created the system

of the Messenger RNA going from the Mitochondria to the DNA which

then instructs the Mitochondria. It's an incredibly complex yet

circular system.

Yet it's also designed and created by the same Person who also

designed and created oxygen. The same Person who's known all along

that His oxygen given at higher atmospheric pressures will not only

change the way mitochondria works but also the DNA itself. Pretty

amazing. Pretty complex, yet also simple.

Kind of like God himself. To save me he died for me.

Maybe if we all stop a minute and acknowledge that we've been endowed

by our Creator, and keep Him in mind as we struggle through this,

perhaps some of the Holy patience I'm learning from Jimmy--which

helps me to help him--perhaps some of my patience will rub off me and

rub on those around me--even some of these doctors. Then they will

see some of the things I'm seeing/we're seeing/we're

understanding--which will help them to help us to help our kids.

Kind of like another Divinely-designed and Divinely-created perfect

circular system.

But it only works if we take a breath, breathe deeply, and put

patience and forgiveness in place.

Just a thought.

--

Freels

2948 Windfield Circle

Tucker, GA 30084-6714

770-491-6776 (phone)

720-234-5757 (fax)

mailto:dfreels@...

http://www.freelanceforum.org/df

[Guest guest]

My heartfelt thanks to both and for each taking the time

share these thoughts and emotions. They certainly resonate with me

and our situation with .

Dave Snow

> ,

>

> We've been in denial for years. We don't want this, therefore we

deny

> it. Nor do we " claim it. " When someone asks if Jimmy has cp, we

> instead say Jimmy has a brain-injury. We've found that if we say cp

> then the other party believes there's no hope--whereas if we say

> brain-injury, they continue to believe there's hope (which there

> is)(which is what we want).

>

> Regarding your other planet analogy, at some point someone will put

> the essay in your hands about expecting to take a journey to Italy

> but somehow you wound up in Holland instead. Most of us have seen

> that one. The first time it was given to us was by a well-meaning

> Early Interventionist who said she felt our pain. I read through it

> and asked her what was wrong with Holland, then explained to her

that

> I was born in Holland (I was).

>

> I would like to share a thought or two. In the last few months I've

> come to think of parenting a brain-injured child in a new way, an

> unexpected way. I've never believed that God chose Sara and I to

> parent Jimmy because somehow we're more special or better parents

so

> we then get the difficult case. God is the Lord of Life. He doesn't

> want anyone to have sickness or disease. His desire is that we seek

> Him and in the process we will be cleansed and made whole--body,

> mind, and spirit.

>

> That seems impossible, but many parents here have experienced it

> nonetheless, to one degree or another. We all want the most degrees

> of it as possible. We all want perfect wholeness for our kids. I'm

> more convinced now more than ever that this is actually achieveable.

>

> About a year ago Jimmy was invited to a birthday party by Ben, an

> older kid who also has a brain-injury. Ben said he was inviting

about

> ten kids over like himself and set up all kinds of adapted games

for

> everybody to play, with prizes. Jimmy was having a blast and Ben

was

> wheeling around checking on everybody to make sure they were

enjoying

> themselves. I asked him when he was going to play too, and he said

he

> wasn't, that he just loved watching " all the kids who never get

> invited to birthday parties having fun. "

>

> It was a profound experience for me. The Lord of Life commands us

to

> do unto others as we would have them do unto us, to love our

> neighbors as ourselves, and here was this kid who was actually

doing

> just that on the one day of the year when he would be perfectly

> justified thinking only about himself--if he wanted. But he didn't

> want that for his birthday. I've since discovered that the hurt

kids

> instinctively and unselfishly give and help out other hurt kids.

They

> truly give.

>

> Most parents of hurt kids are like that too. Maybe that's why we're

all here.

>

> It is my increasing awareness of my growing unselfishness that's

made

> me look at all this differently. I'm beginning to think about this

in

> terms of stewardship. While I'm here in this place, is there

> something I can do to make things better for brain-injured children

> in the future. Is there something I can do to find joy and peace

> anyway in the midst of heartache? What can I learn or glean from

> parenting Jimmy that I can pass on? Is there something I can learn

> from him that will help me help him better?

>

> Patience? Is it patience that I need more of? If I can become more

> patient with others can God empower me more?

>

> One thing I've learned is there is a greater amount of Planet

Earth's

> insanity that we have to deal with. Brain-injury is a public

> business. Everyone's always in your business. The ones who poke the

> most always seem to be convinced that they know more about Jimmy

and

> taking care of Jimmy than we do. From IEP's to doctors to teachers

to

> relatives to neighbors to anonymous experts in grocery stores and

> shopping malls and parking lots.

>

> For example, here is a hospital (a nonperson, not even a human

being)

> declaring Itself more qualified to parent a child than the mother

of

> the child. That's insane, but somehow in 2004 AD, that concept gets

> enough traction the only way to resolve it is to go before a judge.

>

> Another example. This is excerpted from the newpaper story

> (http://www.madison.com/wsj/home/local/index.php?

ntid=21506 & ntpid=5)

> about Grace Kenitz:

>

> " She's not cured, but there's been a significant improvement, " said

> Dr. Yaffe, a pediatric gastroenterologist at Dean Clinic

who

> installed Grace's abdominal feeding tube years ago. " A hyperbaric

> chamber is not yet an approved method of treating her disease.

> Conventional medicine does not see (HBOT) as an advantage, but

> (Kenitz) would like it to be seen as part of mainstream Western

> medicine. It's seen as helping, but we need studies to know whether

> this is really effective treatment. "

>

> Now this is from the guy who has personally treated Grace. This is

> the guy who knew three or four years ago that there were only four

> other cases like Grace in the entire world (out of 9 or 10 billion

> people). This is the guy who knew Grace wouldn't live past age two.

> This is the guy who seems more upset that Grace's mom was right,

and

> he was wrong. This is a guy who still doesn't understand that it's

> not a hyperbaric chamber that has changed Grace's DNA so that her

> mitochondria is now working--it's oxygen that's been administered

at

> an atmospheric pressure that's greater than a normal atmospheric

> pressure.

>

> If he has another Grace Kenitz in his career, will he put her (or

> him) in a hyperbaric chamber--especially since death is imminent

and

> nothing else will help?

>

> Here's what he says, " It's seen as helping, but we need studies to

> know whether this is really effective treatment. "

>

> My usual self responds with 'Studies? Studies? There are five kids

on

> the entire planet and they'll all be dead in two years. How are you

> going to do a study when it'll take you three years just to get it

> funded and approved.'

>

> Now I'm thinking, wait a minute. Let's be patient here because Dr

> Yaffe's learning too. Maybe what we all need to do is first realize

> and then acknowledge who designed and created our DNA, who designed

> and created the mitochondria, and who designed and created the

system

> of the Messenger RNA going from the Mitochondria to the DNA which

> then instructs the Mitochondria. It's an incredibly complex yet

> circular system.

>

> Yet it's also designed and created by the same Person who also

> designed and created oxygen. The same Person who's known all along

> that His oxygen given at higher atmospheric pressures will not only

> change the way mitochondria works but also the DNA itself. Pretty

> amazing. Pretty complex, yet also simple.

>

> Kind of like God himself. To save me he died for me.

>

> Maybe if we all stop a minute and acknowledge that we've been

endowed

> by our Creator, and keep Him in mind as we struggle through this,

> perhaps some of the Holy patience I'm learning from Jimmy--which

> helps me to help him--perhaps some of my patience will rub off me

and

> rub on those around me--even some of these doctors. Then they will

> see some of the things I'm seeing/we're seeing/we're

> understanding--which will help them to help us to help our kids.

>

> Kind of like another Divinely-designed and Divinely-created perfect

> circular system.

>

> But it only works if we take a breath, breathe deeply, and put

> patience and forgiveness in place.

>

> Just a thought.

>

>

>

> --

>

>

> Freels

> 2948 Windfield Circle

> Tucker, GA 30084-6714

> 770-491-6776 (phone)

> 720-234-5757 (fax)

> mailto:dfreels@m...

>

> http://www.freelanceforum.org/df

>

>