Re: Job hunting continues... part 2.0

November 28, 2003

Chantelle: (Interesting comment) because for example at the DbI conference, it

was said how " well " you function considering the sensory deficits...more to my

point I continue to make about the effects of sensory loss. Sorry TIMS isn't

working out. There is a girl who is deaf here, and does well in the busy time

just pouring the coffee (work as a team). Perhaps they can improve on the

amplification of the drive through? We practice job skills which students could

transfer to own business in home community, such as computer key cleaning;

paper shredding; copy, collate and/or mail service; or how about making things

to sell: dog biscuts, pet bandanas, cat toys; candles; stress pouches for exam

time with lavender in them....???

Ann Gloyn, Specialist Teacher

Job hunting continues... part 2.0

Anyone need someone to work for them. I need work. this Tim Hortons

thing isnt working out. My hearing and vision seems to be impacting me

more then I origanaly realized.

Chantelle

635 Millgrove SideRd

Waterdown, Ontario

L0R 2h2

Canada

November 28, 2003

Hello Everyone:

I am the new grandma of our little " " ...he is four months

old and this has been the hardest four months I have ever lived.

I have had 12 children of my own, and to see my daughter have this little

boy with Charge has been devastating, to say the least.

Of course non of us new what Charge was when was born, but slowly

we are learning all about the symptoms. We have not had home for any

length of time, so we have watched him grow up in the hospital. He is a real

joy to us, he now smiles and " we " believe he knows us.

If anyone can give me some words of encouragement I would greatly enjoy

them, are there any other " Grandma's " out there that might like to write to me?

Grandma of " "

Wimmer

November 28, 2003

Welcome . I am not a grandma, I am a mom of a 16 year old Charger,

so all I can say is, like any medical diagnosis, truth is power. By this I

mean, knowing what the dx is is the first step in knowledge about the

syndrome, which is the key to accepting it. Know that it gets better in

time, the beginning is the scariest, most depressing time that truly sucks,

and your heart aches for the little child, the burdened parents and your

dreams for how " it should have been " . BUT... we have all found that

Chargers are the most resilient and CHARMING little people you can ever hope

to meet, and their accomplishments mean more than a " typical kid " 's

accomplishments, because of the obstacles they overcome. You will find a

wealth of loving families here on the elist; good job in finding us so fast!

Feel free to vent, question and share here any time of day or night! To

give you a little encouragement, my son is now 16, is a sophomore in high

school, plays golf, is a gourmet eater, and is taking flying lessons; last

week he took off, flew to another city and landed IN THE DARK all by himself

(instructor in plane) and was so thrilled with seeing the runway lights,

solid landing etc. His quote was, " Mom, when I'm up there flying, I feel

like I'm in God's hands. " SO as you can see, it gets A LOT better~ hang

in there and let love be your guide. Love, Barbra Mousouris in Santa

Barbara, California

-- Re: Job hunting continues... part 2.0

Hello Everyone:

I am the new grandma of our little " " ...he is four months

old and this has been the hardest four months I have ever lived.

I have had 12 children of my own, and to see my daughter have this little

boy with Charge has been devastating, to say the least.

Of course non of us new what Charge was when was born, but slowly

we are learning all about the symptoms. We have not had home for any

length of time, so we have watched him grow up in the hospital. He is a real

joy to us, he now smiles and " we " believe he knows us.

If anyone can give me some words of encouragement I would greatly enjoy

them, are there any other " Grandma's " out there that might like to write to

me?

Grandma of " "

Wimmer

November 28, 2003

,

I am not a grandmother either but I agree with Barbara, " Chargers are the

most resilient and CHARMING little people you can ever hope

to meet, and their accomplishments mean more than a " typical kid " 's

accomplishments, because of the obstacles they overcome. You will find a

wealth of loving families here on the elist; "

Our daugher is 19 and freshman is college.

Her first weeks and years were frightening and life threating to say the least.

She has survived 27 surgeries and is doing very well. Hang in there and love

unconditionally. Welcome to the " CHARGE family " >

Lynn

Ohio

Mom to Tom24, cHARGE 19, and wife to Doug.

Re: Job hunting continues... part 2.0

Hello Everyone:

I am the new grandma of our little " " ...he is four months

old and this has been the hardest four months I have ever lived.

I have had 12 children of my own, and to see my daughter have this little

boy with Charge has been devastating, to say the least.

Of course non of us new what Charge was when was born, but slowly

we are learning all about the symptoms. We have not had home for any

length of time, so we have watched him grow up in the hospital. He is a real

joy to us, he now smiles and " we " believe he knows us.

If anyone can give me some words of encouragement I would greatly enjoy

them, are there any other " Grandma's " out there that might like to write to

me?

Grandma of " "

Wimmer

Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter)

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit www

chargesyndrome.ca, or email info@.... Thank you!

November 28, 2003

Dear Lynn:

I just can't believe all the wonderful letters I have received from just

one introduction to your " Charge " group.....

I was most devastated with the news of our little , I thought " this

cannot be " ....My heart poured out to my daughter.... " what does a mother of a

mother of a charge child say to her " ....I tired to be supportive, but in the

still of the night my heart would cry out to my own daughter.

Now four months later, and growing up, we have been blessed....I

am sure our road is long, but together as a family we will make it.

Thank you for your kind words of encouragement.

November 29, 2003

,

You will find support, hope and miracles here. Each child's

story is different but they all succeed in many many ways. Glad you found the

list. It is a long story but I didn't find the list until our was 17. We

were " alone " for years. I had never met another child like ours until last

summer when I went to the conference in Cleveland.

Lynn

Re: Job hunting continues... part 2.0

Dear Lynn:

I just can't believe all the wonderful letters I have received from just

one introduction to your " Charge " group.....

I was most devastated with the news of our little , I thought " this

cannot be " ....My heart poured out to my daughter.... " what does a mother of a

mother of a charge child say to her " ....I tired to be supportive, but in the

still of the night my heart would cry out to my own daughter.

Now four months later, and growing up, we have been blessed....I

am sure our road is long, but together as a family we will make it.

Thank you for your kind words of encouragement.

November 29, 2003

Dear Barbara:

Thank you for responding to my email......... " will we ever get to 16 years

with this child? " ......I am so happy there are success stories for us to

relate to..........of course like the rest of all of you, we had never heard of

" Charge " before.......

With the Grace of God, is surviving.........he is growing up....I

told my daughter if I could look back at all of my children I would say " where

did the time go? " .....

Like I have said to many of you " Mom's " the hardest thing to look at it

my daughter going through this, I know I can go home and " try " to forget this

has happened but she lives everyday of her life now, with the uncertainty of

. I am being supportive, but at times I just go home and

collapse.........I know somewhere we will see God's plan here, and the answers

to our

questions, but this is all so new for us.

Thank you once again, for your kind words and encouragement that we are

not alone.............

November 30, 2003

I just want to say how wonderful I think it is to see so many grandparents

on the list. I can imagine it must be very difficult to watch your son or

daughter as well as your grandchild go through this, but in the end these

children are such a marvel and a joy and everything is such a celebration

when they accomplish something.

Thanks for writing in.

Weir

Mom to Kennedy, 5 yr old CHARGEr, 14, 12 and wife to Graeme

New Brunswick, Canada

Visit our family web site: http://personal.nbnet.nb.ca/gweir

CHARGE Syndrome Canada: http://www.chargesyndrome.ca

Re: Job hunting continues... part 2.0

Dear Lynn:

I just can't believe all the wonderful letters I have received from just

one introduction to your " Charge " group.....

I was most devastated with the news of our little , I thought

" this

cannot be " ....My heart poured out to my daughter.... " what does a mother of

a

mother of a charge child say to her " ....I tired to be supportive, but in

the

still of the night my heart would cry out to my own daughter.

Now four months later, and growing up, we have been

blessed....I

am sure our road is long, but together as a family we will make it.

Thank you for your kind words of encouragement.

November 30, 2003

,

Welcome to you and little ! I am sure you will receive

insight and thoughts from other grandparents on the list.

Weir

Mom to Kennedy, 5 yr old CHARGEr, 14, 12 and wife to Graeme

New Brunswick, Canada

Visit our family web site: http://personal.nbnet.nb.ca/gweir

CHARGE Syndrome Canada: http://www.chargesyndrome.ca

Re: Job hunting continues... part 2.0

Hello Everyone:

I am the new grandma of our little " " ...he is four

months

old and this has been the hardest four months I have ever lived.

I have had 12 children of my own, and to see my daughter have this

little

boy with Charge has been devastating, to say the least.

Of course non of us new what Charge was when was born, but

slowly

we are learning all about the symptoms. We have not had home for

any

length of time, so we have watched him grow up in the hospital. He is a

real

joy to us, he now smiles and " we " believe he knows us.

If anyone can give me some words of encouragement I would greatly

enjoy

them, are there any other " Grandma's " out there that might like to write

to me?

Grandma of " "

Wimmer

December 1, 2003

-

My mom felt the same way when my daughter was born. She was suffering two-fold

-- watching her granddaughter hospitalized and watching her daughter struggle as

a mother. I don't know how your is doing. My daughter, Aubrie, is now

6 years old (just had her birthday on Sat.) She had coarctation of the aorta

that required surgery at 8 days old (thoracic heart surgery -- not open heart).

She never figured out how to manage a bottle so had an NGtube for 3 months and

then a Gtube until age 1.5 yrs or so. We didn't know how well she could see or

hear, didn't know if she'd ever eat, she didn't smile at me til about 4 months,

didn't sit up for ages... you get the idea. We were scared to death.

But-- she is now is a regular kindergarten class in our neighborhood school with

a full-time aid. She wears bilateral hearing aids for mild-moderate loss in one

ear and moderate-severe in the other. She got her aids at age 3 yrs. She eats

better than a typical kid -- not picky -- can chomp a chicken leg with the rest

of them. She wears glasses with mild correction but mostly to protect her good

eye. One eye has severe coloboma with very minimal vision. Her balance is a

bit off so she runs, climbs, and plays a bit slower and less competently that

her peers -- but she manages very well. Her speech is difficult to understand

unless you know her, but her language (sentence length, complexity, etc) is

age-level or above. She's learning to read (Tonight, at a gas station

out-of-town, she read the sign and told me it was " freedom " -- and she was

right!! She'd never seen that before!). She's adorable, cuddly, smart, tiny

(only 35-37 lbs)... I never dreamed she's been this far this fast.

At your stage in the game, I was writing to the list asking how life was ever

going to go on. I thought things would never be " ok " again, that I'd never have

a life of my own again, that Aubrie would be a bundle of medical problems

forever... but it didn't turn out that way at all. We still have more doctor

appts than anyone I know, tons of therapists and professionals in her life,

school meetings, etc. But -- I am working, she's thriving, our life is back to

" normal " .

Each of the kids with CHARGE has a different set of symptoms. It's great to see

the kids together, because you can see that they could be siblings in some ways.

However, they each have very different skills and abilities. You won't know

what to expect for for quite some time, but I'm here to tell you that

the sky is the limit. And there is light at the end of the tunnel. Just think

of it as a curvy tunnel. You can't see the light until you get past a few more

curves. But trust that the light at the end will show itself eventually.

Welcome to the list. I hope we can provide the support you and your family

need.

Michele W

mom to Aubrie (6 yrs) CHaRgE and (12 yrs)

Re: Job hunting continues... part 2.0

Hello Everyone:

I am the new grandma of our little " " ...he is four months

old and this has been the hardest four months I have ever lived.

I have had 12 children of my own, and to see my daughter have this little

boy with Charge has been devastating, to say the least.

Of course non of us new what Charge was when was born, but slowly

we are learning all about the symptoms. We have not had home for any

length of time, so we have watched him grow up in the hospital. He is a real

joy to us, he now smiles and " we " believe he knows us.

If anyone can give me some words of encouragement I would greatly enjoy

them, are there any other " Grandma's " out there that might like to write to

me?

Grandma of " "

Wimmer

December 1, 2003