Charge

August 30, 2006

I am still trying to make sense of the Charge diagnosis. It seems like

such a complex condition, involving so many different parts of the body

and organs. They tell you MOST children will also be mentally retarted.

Some will develop seizures and cerebral palsy. I am wondering if this

is really true. I am curious how many of you out there have found this

to be true and how many Charge children actually have brain

abnormalities, and conditions such as polymicrogyria or lissencephaly.

Liz

August 30, 2006

Thank you , you are right.

You know what is funny, my little grandaughter, Meagan, 7 years old,

's sister, she stops everyone, nurse, whoever, every time we are

out with , and she asks " Will my brother be OK?? " She is like a broken

record! She is still doing this, but not as much. The first night, the day

he was born and he was in the NICU, and mommy was also in the hospital

recovering from C.Cection, I brought her home with me, she cried and cried

and I hugged her, and I cried too. She is only 7 but she knew that something

was very wrong. Now that is home, she is doing much better. She

understands he has " problems " but he will be OK!

Grandma Liz

-- Re: Charge

Liz, It is overwhelming to read the information on CHARGE Syndrome

out on the internet. The only information I rely on is the

information I receive right here from actual parents of children

with CHARGE--and of course, the adults with CHARGE that belong to

this list. I too very much wanted to know what aspects of CHARGE

would affect my daughter. The reality is, we won't know until our

children grow and develop. We just have to take one day at a time

and try to be proactive based on things we know might happen. I've

reititerated this story before, but I feel compelled to share it to

you--as I don't know if you've heard it. During the early days of

the birth of my daughter I begged anyone who would listen to me to

tell me what my daughter would be like. I actually asked a doctor

who was passing by, " Will my daughter be normal " ? All he said to me

was this: " Love your baby " . And you know what? In the end, that's

all we can do--LOVE our children. There are children who have no

medical issues but have no love, and they end up having problems.

If we follow through on the best medical advice we can get, and LOVE

our babies, in the end, they are here for our care--they are the

light of our world--and it will be OKAY!!! We won't get all the

answers at once, but what our children have, is what they have. We

can't go back in time, but we can plan for a great future. I have

never met a child with CHARGE who has been mentally retarded. When

I went to the CHARGE conference in Miami I talked with adult women

with CHARGE who gave me all the hope in the world that my daughter

would grow up and be my little shopping buddy, and that we would be

the best of friends. I worry--for sure I worry--but most of all, I

LOVE my baby

God Bless and stay strong! B, mom to Zachary 5 years and

Carmen 2 years (CHARGE)

>

> Mental Retardation---- UOHHHHGGGHHH ugly word, erase that from your

> vocabulary lol please!

>

> I dont think anyone of the chargers have mental retardation

actualy. Some

> may be developmenaly delayed due to vision and hearing, but they

are still

> very BRIGHT kids

>

> Chantelle (27 year old CHARGEr IN college no less)

>

> --

> My spelling's kinda wobbly. It's good spelling but the letters

wobble and

> end up in the wrong places. - Winnie the Pooh

>

August 30, 2006

Liz,

I second what ina has said. I remember the day Evan was given the CHARGE

diagnosis. Evan's attending neonatologist had printed out some sort of " Fact

Sheet " on CHARGE--which was basically a list of all the associated problems. I

started to read the list, and started crying. It was very overwhelming to see

right there in black and white all the things that " could " be wrong. But no two

kids with CHARGE will have exactly the same presentation. In terms of the

mental retardation (or developmental delay, to be more PC), I have also read

that earlier studies over-estimated the percentage of kiddos with this. Often,

it was just a communication issue--input affected by vision, hearing, balance

problems and output complicated by facial palsy and balance problems. If you

can over-come these hurdles to communicating, the person inside has normal

intelligence.

I think it is a normal part of grieving and healing to question the diagnosis,

to be angry at it. It's hard to think of all the problems your grandson may

have all at once--I know had I been presented with a list of Evan's problems

that we know about now on the day he was born, I would have had a mental

breakdown long ago. Looking at the percentages for each of the complications is

sobering, but none of them are 100%. I've gotten myself through many a day

thinking, " Well, maybe Evan will be one of the 10% or 15% that doesn't have

that. " It may not be true or even realistic to think that way, but allowing

myself that measured amount of denial has been absolutely essential to coping in

the long run.

One of the hardest things for me to be patient about is waiting to see if Evan

has any cognative impairments. It's difficult to evaluate when they are really

young, because infants don't do anything that involves cognition until later.

Most (well, all) of the physical skills Evan has been behind with. And he is

behind in communication because of his hearing loss. But socially, emotionally,

and cognitively so far he has been right on. He was able to perform a

subjective test of his hearing this last week--behaviorally, a child has to be

8-12 months to even understand the concept of the test. He is 13 months and he

" got it " after 3 tries (the normal # it takes most kids to understand what they

need to do).

If you haven't already, I would encourage you to seek out other parents and

grandparents of special needs kids that you can talk to face to face. The

hospital social worker can provide you information about a local parent to

parent group. Although the kids will have differrent diagnosis, there are still

enough commonalities to talk about. My husband and I have found this an

invaluable resource.

(mom to Evan, 13 months)

ina Multhaupt wrote:

Hi, Liz.

Good news here... in the recent research, it is no

longer true to say that MOST kids with CHARGE will

develop mental retardation. There seems to be a

higher chance at developing seizures, but there are

many kids with CHARGE who never develop seizures. I

have not read about a large correlation between CP and

CHARGE. The thing is, there is SO MUCH VARIATION in

how CHARGE presents itself.

TO me, it is " easiest " to deal with Vinny's diagnosis

by reminding myself that the one thing for sure all

kids with CHARGE have in common is variation in

symptoms. There is where I found my hope... he may

not develop seizures, he may not have mental

retardation, he MAY learn how to walk and talk and

eat... The hardest part is waiting to see what the

future holds for him. Only HE will be able to show us

what he is capable of and it will happen on his own

timeline. Frustrating and anxiety-producing?

Absolutely. However, I can fear the worst or I can

hope for the best. I choose- for Vinny's sake- hope

for the best. He will write his own story of CHARGE

and he will tell us his story as time moves on. We

just have to sit patiently and wait, doing all we can

for him in the meantime. It surely is a testament to

one's patience, but if that is what he needs from us

then that is what we give him.

Hang in there and give yourself a hug from me,

ina, mom to Luca (3) & Vinny (14 months w/ cHARgE)

--- liz_dolz wrote:

> I am still trying to make sense of the Charge

> diagnosis. It seems like

> such a complex condition, involving so many

> different parts of the body

> and organs. They tell you MOST children will also be

> mentally retarted.

> Some will develop seizures and cerebral palsy. I am

> wondering if this

> is really true. I am curious how many of you out

> there have found this

> to be true and how many Charge children actually

> have brain

> abnormalities, and conditions such as polymicrogyria

> or lissencephaly.

>

> Liz

>

__________________________________________________

August 30, 2006

Liz, What a sweet story. God Bless her sweet little heart. When my

daughter came home, she had a trach and my son would go around with

a stick putting it up to his stuffed animals' necks to " help them

breath " . He was 3 at the time. Now he is five and when Carmen's

trach came out, he was sooo excited--he told everyone " Guess what?

Carmen's trach is out! " He even told me that whenever he threw a

penny in the fountain that he always wished that Carmen's trach

would come out. The siblings of our little CHARGE kids are

certainly courageous, too. I am proud of my son's sensitivity

towards his baby sister--as I'm sure you are proud of Meagan. I

have no doubt she is an excellent big Sister!

B.

> >

> > Mental Retardation---- UOHHHHGGGHHH ugly word, erase that from

your

> > vocabulary lol please!

> >

> > I dont think anyone of the chargers have mental retardation

> actualy. Some

> > may be developmenaly delayed due to vision and hearing, but they

> are still

> > very BRIGHT kids

> >

> > Chantelle (27 year old CHARGEr IN college no less)

> >

> > --

> > My spelling's kinda wobbly. It's good spelling but the letters

> wobble and

> > end up in the wrong places. - Winnie the Pooh

> >

August 30, 2006

Liz,

I too in the beginning was told the my 's brain was abnormal...they

told me he would be profoundly retarded...not walk ....not talk or make any

contribution to society....We were at Yale ...can you believe that the doctors

would say those things??I was appalled...how could you know for a fact that my

precious little boy would not do any of those things? I was determined to take

into consideration all the possibilities of CHARGE but not let it dictate 's

path. My does walk...most of the time runs,he does talk all day right from

the moment his feet hit the floor in the morning until his eye close to sleep.

As for making a contribution to society...He does OK there....He volunteers his

time a visits with patients having surgery at my mother's department....he walks

our neighbors little boy to preschool...he loves to speak publicly......he has

MC'd a few raffles...We visit the folks at the assisted living and let lets them

read to him...he plays bingo

too...In the beginning the doctors did not know what to say...I have to say

perhaps making the statements they made offered me an opportunity to prove them

wrong ....it would have been horrible if I was told he would be perfectly normal

and had all the issues arise...

The best we can do is love our children and use the issues of CHARGE as

guidelines not definites...

Currently is in typical third grade in our local school...He has hearing

and vision issues...a few minor medical issues.....He is happy and funny...He

has several friends. And he even has a girlfriend!!!!! She invited him over

several times to swim in her pool

Ellen mom to almost 9

August 30, 2006

Wow, this is great. I love hearing this. This is why I am giving my son and

daughter IL a computer, so they can be in touch with and people like you,

mothers and fathers of children with Charge that really know what is going

on! I am going to see them tomorrow and we will have it up and running so

they can join this group too.

Thanks so much for your encouraging stories!

-- Re: Charge

Liz,

I too in the beginning was told the my 's brain was abnormal..

they told me he would be profoundly retarded...not walk ....not talk or make

any contribution to society....We were at Yale ...can you believe that the

doctors would say those things??I was appalled...how could you know for a

fact that my precious little boy would not do any of those things? I was

determined to take into consideration all the possibilities of CHARGE but

not let it dictate 's path. My does walk...most of the time runs

he does talk all day right from the moment his feet hit the floor in the

morning until his eye close to sleep. As for making a contribution to

society...He does OK there....He volunteers his time a visits with patients

having surgery at my mother's department....he walks our neighbors little

boy to preschool...he loves to speak publicly......he has MC'd a few raffles

...We visit the folks at the assisted living and let lets them read to him..

he plays bingo

too...In the beginning the doctors did not know what to say...I have to

say perhaps making the statements they made offered me an opportunity to

prove them wrong ....it would have been horrible if I was told he would be

perfectly normal and had all the issues arise...

The best we can do is love our children and use the issues of CHARGE as

guidelines not definites...

Currently is in typical third grade in our local school...He has

hearing and vision issues...a few minor medical issues.....He is happy and

funny...He has several friends. And he even has a girlfriend!!!!! She

invited him over several times to swim in her pool

Ellen mom to almost 9

August 30, 2006

ina,and everyone who responded to Liz

I loved what you all said, so very nicely expressed, so special. Where

would the world be without hopeful expectation. I was thinking last night-I

wonder if my posts even seem real to some. Yet Di was acutely medically

complicated; with our share of difficult challenges through the years, and

some

toughies today, and there will be more coming to be sure. But along with them

were all the positive, fun things I've mentioned. Every time after I send a

" keep the faith " post, I think " you dolt!-They feel afraid and overwhelmed, and

so have I, and instead of sympathy, there went Miss Pollyanna again! " But I

just can't help myself-I don't try-it just happens. It's become my natural

response to that pain-whether its mine or yours.

Nobody can say for sure what the future will hold and sometimes hopeful

expectation is all we can hold on to. I just hope it doesn't convey disrespect

for anyone's burdened heart.

Working and living with and through that journey is often the greatest

challenge and greatest learning experience we have upon us. We learn to make

it

through so we can help them make it through. I don't mean to not honor

anyone's grieving process, or the utter exhaustion from fighting the good

fight. I

believe its an inescapable aspect of Charge, which means its irrefutably ours

to deal with. I guess its my way of trying to wipe away your tears.

Love to all,

in Ma. (, 21 yrs)

August 30, 2006

Liz,

My daughter is 11. She has had 37 operations. She arrested after open

heart surgery at the age of 1 year, losing oxygen. Had this not happened, I

think she would be much further ahead. We were told when she was born that we

would be better off " letting her go " . She would be defablind, probably not

walk or talk. etc. I think a lot of her delays are due to the arrest. If you

look up retardation, it is for something to stop growing. Our CHARGE children

are amazing. My daughter continues to amaze me every day. When we go back

to see some of her doctors at the hospital, we have heard things like " I

guess we just dont know " . SHe is still not walking on her own, but i do feel

this is from the arrest, not CHARGE. They put her on seizure medication when

she was little, b/c they thought she was seizing, I too never saw one, we

weaned her off, and 10 years later we have not seen one.

I think the Doctors tell you the worst to cover their butts incase things do

not go well. You will get to know lots of parents on this list serve and

hopefully you will join us at a conference, you will be amazed. The first few

years are very tough, but it does get better.

Cathie, mom to 11 yr CHARGEr

August 31, 2006

ina-

That was so beautifully said. May I share at CHARGE trainings?

Michele W

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

ina Multhaupt

Sent: Wednesday, August 30, 2006 1:38 PM

To: CHARGE

Subject: Re: Charge

Hi, Liz.

Good news here... in the recent research, it is no

longer true to say that MOST kids with CHARGE will

develop mental retardation. There seems to be a

higher chance at developing seizures, but there are

many kids with CHARGE who never develop seizures. I

have not read about a large correlation between CP and

CHARGE. The thing is, there is SO MUCH VARIATION in

how CHARGE presents itself.

TO me, it is " easiest " to deal with Vinny's diagnosis

by reminding myself that the one thing for sure all

kids with CHARGE have in common is variation in

symptoms. There is where I found my hope... he may

not develop seizures, he may not have mental

retardation, he MAY learn how to walk and talk and

eat... The hardest part is waiting to see what the

future holds for him. Only HE will be able to show us

what he is capable of and it will happen on his own

timeline. Frustrating and anxiety-producing?

Absolutely. However, I can fear the worst or I can

hope for the best. I choose- for Vinny's sake- hope

for the best. He will write his own story of CHARGE

and he will tell us his story as time moves on. We

just have to sit patiently and wait, doing all we can

for him in the meantime. It surely is a testament to

one's patience, but if that is what he needs from us

then that is what we give him.

Hang in there and give yourself a hug from me,

ina, mom to Luca (3) & Vinny (14 months w/ cHARgE)

--- liz_dolz <liz_dolz (AT) yahoo (DOT) <mailto:liz_dolz%40yahoo.com> com> wrote:

> I am still trying to make sense of the Charge

> diagnosis. It seems like

> such a complex condition, involving so many

> different parts of the body

> and organs. They tell you MOST children will also be

> mentally retarted.

> Some will develop seizures and cerebral palsy. I am

> wondering if this

> is really true. I am curious how many of you out

> there have found this

> to be true and how many Charge children actually

> have brain

> abnormalities, and conditions such as polymicrogyria

> or lissencephaly.

>

> Liz

>

__________________________________________________

August 31, 2006

I remember one of 's developmental assessments stated she had

" non-permanent developmental delays " . I asked what they meant and the

assessment team said that means she is behind but has every probability to

catch up later. And she really has! Whenever I think about her not ding

something other kids do, I just remind myself that it is " non-permanent " !

Friends in CHARGE,

Marilyn Ogan

Mom of (14 yrs, CHARGE+ JRA)

Mom of Ken (17 yrs, Asperger's)

Wife of Rick

oganm@...

Re: Charge

Liz, I look at the word " retardation " as really a delay--like growth

retardation is really a delay in growth. No doubt, plenty of CHARGE

kids have delayed growth and development, but they catch up

eventually. The first 2 years are tough for sure. Things get

better, I promise!

B.

August 31, 2006

Hi Liz,

My son doesn't have any brain abnormalities or the other things you

mentioned. He has had 3 seizures and we still aren't sure if they really

were since I didn't witness them. He is 9. He started walking at 2.5,

signing until 4 years old and then decided to speak clearly, which is

amazing in itself since he is deaf. He is very intelligent and has a great

sense of humor. Most of the kids I know DO NOT have retardation, but do

have physical delays from hospitalizations due to lots of medical

procedures. To date my son has had 23 operations. For all he has been

through he must be pretty smart to be functioning almost on grade level.

When we first got the diagnosis I was told my son would be deaf, blind and

retarded. He is deaf, not blind but has vision issues. He runs, jumps,

bowls, plays soccer, rides a horse, swims and has a one very good friend. He

does need to work on his socialization. The one thing I love about him is

that he is VERY honest, to everyone, which is also a bad thing. He also

deals with OCD and an anxiety/mood disorder.

However, " They " , the doctors, were totally wrong about his prognosis. He

just had surgery the other day and the surgeon starts telling me how all of

the doctors in the hospital are just amazed at his progress, since they know

where he started and where he is now. His ENT saved his life as a baby and

every time he sees him he says makes his heart skip beats. They

never thought he would leave the hospital, and here he is having

conversations with the doctors.

Yes CHARGE is very complex, but you need to look at your kid as a kid and

let him/her develop and with maturity you will see great things happen that

will surprise you greatly.

Debbie Matasker

Charge

I am still trying to make sense of the Charge diagnosis. It seems like

such a complex condition, involving so many different parts of the body

and organs. They tell you MOST children will also be mentally retarted.

Some will develop seizures and cerebral palsy. I am wondering if this

is really true. I am curious how many of you out there have found this

to be true and how many Charge children actually have brain

abnormalities, and conditions such as polymicrogyria or lissencephaly.

Liz

August 31, 2006

,

I love your hopeful and optimistic posts. They keep

me going when we (my family) are not feeling

particularly optimistic on a given day. I love to

hear that is doing great. It helps me to

realize Vinny might be that kid one day, too. Twenty

years from now, I hope to be the one to tell others

that things will get better and that my son is doing

so great... check that- I hope VINNY is the one

posting messages to new parents telling them that

things can turn out great. Your posts, and all of the

adults with CHARGE who post, help me to see that there

is a brighter side to the first few, dark and scary

years.

ina, mom to Luca (3) & Vinny (14 months w/ cHARgE)

--- mdlinda@... wrote:

> ina,and everyone who responded to Liz

> I loved what you all said, so very nicely expressed,

> so special. Where

> would the world be without hopeful expectation. I

> was thinking last night-I

> wonder if my posts even seem real to some. Yet Di

> was acutely medically

> complicated; with our share of difficult challenges

> through the years, and some

> toughies today, and there will be more coming to be

> sure. But along with them

> were all the positive, fun things I've mentioned.

> Every time after I send a

> " keep the faith " post, I think " you dolt!-They feel

> afraid and overwhelmed, and

> so have I, and instead of sympathy, there went Miss

> Pollyanna again! " But I

> just can't help myself-I don't try-it just happens.

> It's become my natural

> response to that pain-whether its mine or yours.

> Nobody can say for sure what the future will hold

> and sometimes hopeful

> expectation is all we can hold on to. I just hope

> it doesn't convey disrespect

> for anyone's burdened heart.

> Working and living with and through that journey is

> often the greatest

> challenge and greatest learning experience we have

> upon us. We learn to make it

> through so we can help them make it through. I don't

> mean to not honor

> anyone's grieving process, or the utter exhaustion

> from fighting the good fight. I

> believe its an inescapable aspect of Charge, which

> means its irrefutably ours

> to deal with. I guess its my way of trying to wipe

> away your tears.

> Love to all,

> in Ma. (, 21 yrs)

>

> [Non-text portions of this message have been

> removed]

>

__________________________________________________

August 31, 2006

Michele,

Absolutely.

ina

--- Michele Westmaas

wrote:

> ina-

>

> That was so beautifully said. May I share at CHARGE

> trainings?

>

> Michele W

>

> _____

>

> From: CHARGE

> [mailto:CHARGE ] On Behalf Of

> ina Multhaupt

> Sent: Wednesday, August 30, 2006 1:38 PM

> To: CHARGE

> Subject: Re: Charge

>

> Hi, Liz.

>

> Good news here... in the recent research, it is no

> longer true to say that MOST kids with CHARGE will

> develop mental retardation. There seems to be a

> higher chance at developing seizures, but there are

> many kids with CHARGE who never develop seizures. I

> have not read about a large correlation between CP

> and

> CHARGE. The thing is, there is SO MUCH VARIATION in

> how CHARGE presents itself.

>

> TO me, it is " easiest " to deal with Vinny's

> diagnosis

> by reminding myself that the one thing for sure all

> kids with CHARGE have in common is variation in

> symptoms. There is where I found my hope... he may

> not develop seizures, he may not have mental

> retardation, he MAY learn how to walk and talk and

> eat... The hardest part is waiting to see what the

> future holds for him. Only HE will be able to show

> us

> what he is capable of and it will happen on his own

> timeline. Frustrating and anxiety-producing?

> Absolutely. However, I can fear the worst or I can

> hope for the best. I choose- for Vinny's sake- hope

> for the best. He will write his own story of CHARGE

> and he will tell us his story as time moves on. We

> just have to sit patiently and wait, doing all we

> can

> for him in the meantime. It surely is a testament to

> one's patience, but if that is what he needs from us

> then that is what we give him.

>

> Hang in there and give yourself a hug from me,

> ina, mom to Luca (3) & Vinny (14 months w/

> cHARgE)

> --- liz_dolz <liz_dolz (AT) yahoo (DOT)

> <mailto:liz_dolz%40yahoo.com> com> wrote:

>

> > I am still trying to make sense of the Charge

> > diagnosis. It seems like

> > such a complex condition, involving so many

> > different parts of the body

> > and organs. They tell you MOST children will also

> be

> > mentally retarted.

> > Some will develop seizures and cerebral palsy. I

> am

> > wondering if this

> > is really true. I am curious how many of you out

> > there have found this

> > to be true and how many Charge children actually

> > have brain

> > abnormalities, and conditions such as

> polymicrogyria

> > or lissencephaly.

> >

> > Liz

> >

>

> __________________________________________________

>

August 31, 2006

,

As I was reading what you wrote, I realized how much I have changed

in such a short time. I still need to hope for Rasha or I would

never push to see her capabilities. But what you said is right. I

look at what you say and realize the only way to truly heal is to

change your perceptions and expectations of success and failure and

what you want and expect for your kids. The reality is that you have

to accept people for who they are no matter who they are in your

life-your child, your spouse or your best friend. If you don't

you'll never be at peace or happy and neither will they.

You know, if people never changed I still wouldn't eat broccoli and

I'd miss my favorite dish at the Chinese buffet! :-)

Janay

>

> ina,and everyone who responded to Liz

> I loved what you all said, so very nicely expressed, so special.

Where

> would the world be without hopeful expectation. I was thinking

last night-I

> wonder if my posts even seem real to some. Yet Di was acutely

medically

> complicated; with our share of difficult challenges through the

years, and some

> toughies today, and there will be more coming to be sure. But

along with them

> were all the positive, fun things I've mentioned. Every time

after I send a

> " keep the faith " post, I think " you dolt!-They feel afraid and

overwhelmed, and

> so have I, and instead of sympathy, there went Miss Pollyanna

again! " But I

> just can't help myself-I don't try-it just happens. It's become

my natural

> response to that pain-whether its mine or yours.

> Nobody can say for sure what the future will hold and sometimes

hopeful

> expectation is all we can hold on to. I just hope it doesn't

convey disrespect

> for anyone's burdened heart.

> Working and living with and through that journey is often the

greatest

> challenge and greatest learning experience we have upon us. We

learn to make it

> through so we can help them make it through. I don't mean to not

honor

> anyone's grieving process, or the utter exhaustion from fighting

the good fight. I

> believe its an inescapable aspect of Charge, which means its

irrefutably ours

> to deal with. I guess its my way of trying to wipe away your

tears.

> Love to all,

> in Ma. (, 21 yrs)

>

August 31, 2006

lis i have to say i agree with debbie and te toers she i try to label my

self as a 21 year old charger with soe issues taht u could call

devolopmeantla if you want to but they arent retarardation sure my growth is

retarded i admit it is but my other issues i may have are just that of any

person who has spent as much time as i have in hosptial and around people

like me i am iproving but i if you saw me a few years ago when i first

gjoined this group which was acutaly nearly two ears ago my social skills

well i was good but i was more likely to be upset at stuff now i still do

that but i am better than i used to be there is room for improvement yes

there is with all of us chargers but it doesnt mean that we are that bad and

as for what the drs say i believe cathy is right soem of my drs have acutaly

said well id like to say tis could hapen but in reality you will find this

might be the most likely option acutaly my main tummy dr says that hes liek

now its possible you will be off pump but most likely not now i just wish

all drs cold talk like him LOL

>

> ,

>

> As I was reading what you wrote, I realized how much I have changed

> in such a short time. I still need to hope for Rasha or I would

> never push to see her capabilities. But what you said is right. I

> look at what you say and realize the only way to truly heal is to

> change your perceptions and expectations of success and failure and

> what you want and expect for your kids. The reality is that you have

> to accept people for who they are no matter who they are in your

> life-your child, your spouse or your best friend. If you don't

> you'll never be at peace or happy and neither will they.

>

> You know, if people never changed I still wouldn't eat broccoli and

> I'd miss my favorite dish at the Chinese buffet! :-)

>

> Janay

>

> >

> > ina,and everyone who responded to Liz

> > I loved what you all said, so very nicely expressed, so special.

> Where

> > would the world be without hopeful expectation. I was thinking

> last night-I

> > wonder if my posts even seem real to some. Yet Di was acutely

> medically

> > complicated; with our share of difficult challenges through the

> years, and some

> > toughies today, and there will be more coming to be sure. But

> along with them

> > were all the positive, fun things I've mentioned. Every time

> after I send a

> > " keep the faith " post, I think " you dolt!-They feel afraid and

> overwhelmed, and

> > so have I, and instead of sympathy, there went Miss Pollyanna

> again! " But I

> > just can't help myself-I don't try-it just happens. It's become

> my natural

> > response to that pain-whether its mine or yours.

> > Nobody can say for sure what the future will hold and sometimes

> hopeful

> > expectation is all we can hold on to. I just hope it doesn't

> convey disrespect

> > for anyone's burdened heart.

> > Working and living with and through that journey is often the

> greatest

> > challenge and greatest learning experience we have upon us. We

> learn to make it

> > through so we can help them make it through. I don't mean to not

> honor

> > anyone's grieving process, or the utter exhaustion from fighting

> the good fight. I

> > believe its an inescapable aspect of Charge, which means its

> irrefutably ours

> > to deal with. I guess its my way of trying to wipe away your

> tears.

> > Love to all,

> > in Ma. (, 21 yrs)

> >

August 31, 2006

Liz,

We haven't developed any seizures (but I know some have) and I have never

read that they will develop CP! That's a new one on me. Do me a favour and

ask the next time what study from what journal that is from (about

developing CP) - I'd be interested in reading it.

Thanks,

>

> I am still trying to make sense of the Charge diagnosis. It seems like

> such a complex condition, involving so many different parts of the body

> and organs. They tell you MOST children will also be mentally retarted.

> Some will develop seizures and cerebral palsy. I am wondering if this

> is really true. I am curious how many of you out there have found this

> to be true and how many Charge children actually have brain

> abnormalities, and conditions such as polymicrogyria or lissencephaly.

>

> Liz

>

--

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan

September 1, 2006

I love all of the posts, in fact this thread is a keeper with all of the

encouraging words. I agree with Janay, after reading Liz initial post, it

reminds me of how far I have come. Liz, I think that most of us felt

extrmely overwhelmed in the beginning. In fact I think that it took me a

week to read the information on CHARGE completely as it seemed so disturbing

to me at the time I would have to take breaks in between what seemed like

such a long list of complications. Today I am finally at a position that I

stopped thinking about all of the " what if's " and I am ThOUROUGHLY enjoying

every minute I spend with and watching him develop. At on epoint

someone described life with a special needs child as our lives will always

be " more intersting " than all of the average families.. I don't know why I

love that some much, I look at the more interesting as a positive thing,

like most mothers take for granted all of the little things that their

typical developing children do. But us parents of children with CHARGE

apreciate how much work and effort it takes for these extraordinary children

to accomplish those things. I love all 3 of my children so much they reward

me in there own ways. I have a very special place in my heart for , we

have been through so much with eachother and today I actually look forward

to tomorrow with him and how exciting it will be to watch him learn more.

The rewards that brings are CONSTANT we celebrate EVERYTHING, life is

much more interesting when we get to celebrate what others consider " the

little things " .

About the neurology questions that you had. I really don't have a clue the

mumbo jumbo that they found with 's brain some abnormalities somewhere.

All I really remembered from the visit was that the neurologist explained to

me the advantage that has of being a baby. Let me explain in my own

words, which will probably just confuse everyone.... When an older person

has a stroke and it affects a part of the brain it is difficult to recover,

and this has something to do with their age and that there brain has

developed. But in the babies or children there is a lot of " space " and room

for developing. Some of 's wires are " crossed " . So wire " A " needs to

get to wire " B " . In a normal brain " A " shoots directly to " B " . well if his

wires are crossed " A " may not shoot directly to " B " but because he is young

it can kind of repair itself by " taking another route " . " A " will still get

to " B " but it might have to travel around " C " to get there and take the

longer route... what does that mean for him... I picture it as he will be

delayed because the time and energy and work it will take to get " A " to " C "

but once we establish the route, he's got it and we move on. If you haven't

figured out, I have a very stange way of making sense of things, but this

works so well for me I thought it might help someone else too.

mom to

>

> Liz,

> We haven't developed any seizures (but I know some have) and I have never

> read that they will develop CP! That's a new one on me. Do me a favour and

> ask the next time what study from what journal that is from (about

> developing CP) - I'd be interested in reading it.

> Thanks,

>

> On 8/30/06, liz_dolz <liz_dolz@... <liz_dolz%40yahoo.com>> wrote:

> >

> > I am still trying to make sense of the Charge diagnosis. It seems like

> > such a complex condition, involving so many different parts of the body

> > and organs. They tell you MOST children will also be mentally retarted.

> > Some will develop seizures and cerebral palsy. I am wondering if this

> > is really true. I am curious how many of you out there have found this

> > to be true and how many Charge children actually have brain

> > abnormalities, and conditions such as polymicrogyria or lissencephaly.

> >

> > Liz

> >

>

> --

> " It is far better to grasp the universe as it really is than to persist in

> delusion, however satisfying and reassuring. " --Carl Sagan

>

September 1, 2006

erin i love the way you describe things its so beautiful love you ellen

>

> I love all of the posts, in fact this thread is a keeper with all of

> the

> encouraging words. I agree with Janay, after reading Liz initial post, it

> reminds me of how far I have come. Liz, I think that most of us felt

> extrmely overwhelmed in the beginning. In fact I think that it took me a

> week to read the information on CHARGE completely as it seemed so

> disturbing

> to me at the time I would have to take breaks in between what seemed like

> such a long list of complications. Today I am finally at a position that I

> stopped thinking about all of the " what if's " and I am ThOUROUGHLY

> enjoying

> every minute I spend with and watching him develop. At on epoint

> someone described life with a special needs child as our lives will always

> be " more intersting " than all of the average families.. I don't know why I

> love that some much, I look at the more interesting as a positive thing,

> like most mothers take for granted all of the little things that their

> typical developing children do. But us parents of children with CHARGE

> apreciate how much work and effort it takes for these extraordinary

> children

> to accomplish those things. I love all 3 of my children so much they

> reward

> me in there own ways. I have a very special place in my heart for ,

> we

> have been through so much with eachother and today I actually look forward

> to tomorrow with him and how exciting it will be to watch him learn more.

> The rewards that brings are CONSTANT we celebrate EVERYTHING, life

> is

> much more interesting when we get to celebrate what others consider " the

> little things " .

>

> About the neurology questions that you had. I really don't have a clue the

> mumbo jumbo that they found with 's brain some abnormalities

> somewhere.

> All I really remembered from the visit was that the neurologist explained

> to

> me the advantage that has of being a baby. Let me explain in my own

> words, which will probably just confuse everyone.... When an older person

> has a stroke and it affects a part of the brain it is difficult to

> recover,

> and this has something to do with their age and that there brain has

> developed. But in the babies or children there is a lot of " space " and

> room

> for developing. Some of 's wires are " crossed " . So wire " A " needs to

> get to wire " B " . In a normal brain " A " shoots directly to " B " . well if his

> wires are crossed " A " may not shoot directly to " B " but because he is

> young

> it can kind of repair itself by " taking another route " . " A " will still get

> to " B " but it might have to travel around " C " to get there and take the

> longer route... what does that mean for him... I picture it as he will be

> delayed because the time and energy and work it will take to get " A " to

> " C "

> but once we establish the route, he's got it and we move on. If you

> haven't

> figured out, I have a very stange way of making sense of things, but this

> works so well for me I thought it might help someone else too.

> mom to

>

> On 8/31/06, Weir <kawfolks@... <kawfolks%40gmail.com>> wrote:

> >

> > Liz,

> > We haven't developed any seizures (but I know some have) and I have

> never

> > read that they will develop CP! That's a new one on me. Do me a favour

> and

> > ask the next time what study from what journal that is from (about

> > developing CP) - I'd be interested in reading it.

> > Thanks,

> >

> > On 8/30/06, liz_dolz <liz_dolz@...

<liz_dolz%40yahoo.com><liz_dolz%40yahoo.com>> wrote:

> > >

> > > I am still trying to make sense of the Charge diagnosis. It seems like

> > > such a complex condition, involving so many different parts of the

> body

> > > and organs. They tell you MOST children will also be mentally

> retarted.

> > > Some will develop seizures and cerebral palsy. I am wondering if this

> > > is really true. I am curious how many of you out there have found this

> > > to be true and how many Charge children actually have brain

> > > abnormalities, and conditions such as polymicrogyria or lissencephaly.

> > >

> > > Liz

> > >

> >

> > --

> > " It is far better to grasp the universe as it really is than to persist

> in

> > delusion, however satisfying and reassuring. " --Carl Sagan

> >

September 1, 2006

-

I totally get your " rewiring " concept! Love it! It makes good sense to me.

Michele W

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

Sefcik

Sent: Friday, September 01, 2006 3:30 AM