Re: Why am I so sad!!!

[Guest guest]

Lesley,

Happy Birthday to Miss Amelie.

Why are you so sad? Because your daughter has suffered and you couldn't stop

it. Sure you made things better but you couldn't stop it and you couldn't

fix it to make it all just go away. It's not your fault. You've done the best

you could so far. Do you have more to give? You bet. Don't question that,

it just happens.

Why are you in pain? Because you realize that life is fleeting and so very

precious. Because you realize how terribly much you love all your children.

But you have lost a part of your ignorance of what it is like to be on the edge

and worse yet, for Amelie to live on the edge.

The moment Patty was born I too knew something was wrong with her. I cried.

I couldn't help it. I felt she was born too soon and it was my fault to let

her " out. " She was full term but it was just a feeling. When I think of her

birth I remember the fear. When I think of Kris I remember looking to the

future of years and years of joy. With Patty we had to look at moment to

moment,

day to day, and then now out of nowhere here we are. She's 21! It's ok to

not be totally overjoyed with her birth. That is just reality.

Why are you afraid? Because you want answers. You want to know what life

will be like for Amelie, your other children and for you. But you won't get

those answers until you live it. Don't question too much. Our lives are

different but they are not horrible. They're just different. Actually I think

they

are more wonderful than " normal " lives. So just live it.

Why do you cry?

Because finally you know what love is. True, beautiful, precious, but

delicate love.

To know and to give this love for a moment, a year, a lifetime, forever is a

precious gift that has been given to you. It is intense. Few understand the

depth of loving a child so much you would give your life for them just so they

can breathe, swallow, smile, or just be. You have given up yourself for your

child. You've done it for a year now and you're afraid of tomorrow. But

tomorrow comes. Love her today. Love all your children and your husband today.

Then, well, tomorow and the rest just leads on in. Will you have the

strength to continue on to be the best mom to your daughter and all your

children.

Yes. So be happy with the right here and now. Then be proud to look back and

feel all the emotions both good and bad. It's human.

Will you always feel this way? To be honest those feelings remain at the

surface of your skin forever. But not as horribly intense. It is better though

than you can ever imagine right now. Life is beautiful most of the time. And

yes, all of it is totally normal.

So why are you sad? BECAUSE YOU ARE MORE THAN JOYFUL and few understand your

joy!

Happy Birthday to Amelie. " It was a very good year. "

Oh and by the way, what in the world do you mean by squashing babies in teeny

cupboards?

Bonnie, mom to a 23, Patty CHARGE 21, and wife to

[Guest guest]

Lesley,

I'm sorry you're feeling down; it has been a tumultuous year for you and your

family to say the very least. The enormity of it all might just be hitting home

after " surviving " the first year. Things do get better from all I've ever read

on the list (and experienced in person). Do you think maybe school might be a

bit much for you right now? Is there a way you could postpone it until Amelie

is more stable and therefore, the rest of the world is more stable? I worry

that you might be over-extending yourself (I can't believe that I am giving this

lecture to someone else; I hear it all the time). But, it's true, you may find

that giving up a few other things for now to concentrate your energies into

fewer things may help. Just a thought!

Lots of love to you AND AMELIE on her very first birthday!

Love,

Weir

Home: lisaweir@...

Work: lisa.weir@...

Phone:

Web: http://ca.geocities.com/weirfamilyrogers

[Guest guest]

Lesley,

I am so sorry that this has been such a sad day for you. I know you were

looking forward to cheer and thrill at your little bunnie's special day. I

don't have any words of wisdom (I have no children) as I am sure others will. I

can only say that you and your family are heavy in my mind and I hope that

helps.

pam (Boston, MA, USA)

[Guest guest]

Lesley,

I imagine you have heard from others already, but want to send my cyber hugs

your way as well.

Everything you describe to me sounds like GRIEF and that is normal. Yes,

you celebrate that she is alive and for that you are grateful. That does

not mean you do not still grieve the loss of the " perfect " birth, the happy

smiles, the congratulations, visits, and well wishes of friends, spending

time getting to know your baby with Darren and imagining her bright future

as the most perfect baby in all the world. Yes, I know reading this will

make you cry again, but I think that is okay. The work of grief does not go

away by ignoring it and pretending (to ourselves) that all is well when our

bodies physically tell us that is not how we feel. Letting out the pain,

makes way for more good to come in.

The good news is, I do not think the grief on her birthday will ever be this

intense again. Our bodies are nice to us that way. Added to the day of her

birth you have had one HELL of a year and an " anniversary " of a loss on top

of it all is a bit much.

With all you have been through, you have no indication that for Amelie year

two will be better, although we all reassure you it will be. Instead you

see our current struggles and worry that there will always be something and

your life will never be normal again. This is part of feeling the grief and

sadness when it is hard to see the next blue sky. And yet you will. A day

will come when it is the turn around day for Amelie and before you know it

you will realize it has been months without the hospital and that she is

crawling and on and on. With each milestone no matter how big or small you

will be awed by her at mastering it. Yes, you may feel some bittersweet

regret that it might have been different, but I believe that joy will

prevail for all of you.

On the other hand, counseling is never a bad thing. Having someone to speak

your feelings and thoughts to that is not your family can be a huge help.

If you can manage it, do it.

Finally, there are times that grief, especially complicated by the other

stressors you have experienced can trigger clinical depression. If you find

it difficult to function on a routine basis; cannot enjoy moments with the

girls, cannot think to do your university work, sleep all the time or can't

sleep well...; then you may want to see a doctor to see if you need help

from a medication to stabilize your body.

Hoping it is just grief for the day.

(On a funny(?) note. Saturday was 2 years since my dad died. I went to

Phoenix to be with my mom for the weekend and my 15yo decided not to go -

usually she loves to. When I came home I told her she missed a great

Grandma dinner (which she loves), but she may not have missed the tears.

She laughed and said, " That is why I decided not to go. I'm not too into

tear fests. " I had to laugh, because she was right. Saturday was a tear

fest, not in a heart breaking grief way, but in a day of remembering and

honoring him and of course my brother who died 3 months before Dad, combined

with my own new grief on a new Tyler issue. It was a heck of a day, but

necessary in order to get on with living.

Kim L

> Dear All

>

> I have got to get through loads of posts tonight. i need to do this

> one first before Darren gets back from the hospital!!

>

> Today was supposed to be the most special day of the year, for us

> all really, especially after the 16th Dec, to have her still here

> and looking good was all and more than we could have dreamed of.

>

> SO WHY HAVE I SPENT ALL DAY SECRETLY CRYING, AND AT EVERY

> OPPORTUNITY.

>

> I feel that all my other childrens birthdays always take me back to

> that day in hospital that very moment they come into the world, all

> the precious little things you will never forget, the weight the

> time, the head circumference, the first feed,every year one of them

> gets older i am so happy and that day floods back with millions of

> happy memories. And I have a huge feeling of wow i did that I gave

> birth and grew and nutured her,

>

> TODAY HAS BEEN AWFUL, I HAVE HAD TO HIDE MY FEELINGS FROM MY KIDS

> AND DAZ.

>

> We took the girls at 6am to the ward to do balloons and banners

> before school then i stayed with her alone whilst Daz got them back,

> then he came back so i could get to college, then i went back so he

> could have a break and so on.

>

> But all day I kept thinking back to her birth i could not muster any

> happyness just sadness, pity, sorrow, I knew the instance she was

> born something wasnt right, but they all kept reasurring me, a

> mother knows these things , intuition, i had carried three others, I

> feel robbed of this day, because we all cried this day all day, so I

> can not visualise any smiles from Darren or the girls just pain

> etched on faces, and then I declined to see visitors for two whole

> weeks, because every day went from bad to worse.

>

> I just want this day over quickly, even all your lovely bithday

> wishes made me feel sad, is this the norm???

>

> Will every birthday feel like this one???

>

> I dont think this evening has helped, last year I enrolled for a

> counselling course to strengthen my University application and it

> was the first lecture tonight, and that left me feeling sad as well,

> I dont know about learning to counsel i think I need some myself!!

>

> Right thats this one out the way I have to get normal Daz due home

> soon, and we can not sleep at the heart ward she is on they said

> they dont have the room, because they have squashed two babies in

> the most teeniest cupboard!!!!

>

> Lesley x

>

>

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or email

> info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Lesley,

You have every right to cry once in awhile. I know we as mothers

feel like we have to be strong and always there for our childern. We

keep it bottled up for so long it finally comes out on days like

today. I dont know if you will feel like this with every birthday

because Eva has not had her 1st one yet so I do not know but I know

with everyday you have that little girl with you, you will be so

happy and proud you have with you.

Hugs,

Crystal and Eva (8 month charger)

>

> Dear All

>

> I have got to get through loads of posts tonight. i need to do

this

> one first before Darren gets back from the hospital!!

>

> Today was supposed to be the most special day of the year, for us

> all really, especially after the 16th Dec, to have her still here

> and looking good was all and more than we could have dreamed of.

>

> SO WHY HAVE I SPENT ALL DAY SECRETLY CRYING, AND AT EVERY

> OPPORTUNITY.

>

> I feel that all my other childrens birthdays always take me back

to

> that day in hospital that very moment they come into the world,

all

> the precious little things you will never forget, the weight the

> time, the head circumference, the first feed,every year one of

them

> gets older i am so happy and that day floods back with millions of

> happy memories. And I have a huge feeling of wow i did that I gave

> birth and grew and nutured her,

>

> TODAY HAS BEEN AWFUL, I HAVE HAD TO HIDE MY FEELINGS FROM MY KIDS

> AND DAZ.

>

> We took the girls at 6am to the ward to do balloons and banners

> before school then i stayed with her alone whilst Daz got them

back,

> then he came back so i could get to college, then i went back so

he

> could have a break and so on.

>

> But all day I kept thinking back to her birth i could not muster

any

> happyness just sadness, pity, sorrow, I knew the instance she was

> born something wasnt right, but they all kept reasurring me, a

> mother knows these things , intuition, i had carried three others,

I

> feel robbed of this day, because we all cried this day all day, so

I

> can not visualise any smiles from Darren or the girls just pain

> etched on faces, and then I declined to see visitors for two whole

> weeks, because every day went from bad to worse.

>

> I just want this day over quickly, even all your lovely bithday

> wishes made me feel sad, is this the norm???

>

> Will every birthday feel like this one???

>

> I dont think this evening has helped, last year I enrolled for a

> counselling course to strengthen my University application and it

> was the first lecture tonight, and that left me feeling sad as

well,

> I dont know about learning to counsel i think I need some myself!!

>

> Right thats this one out the way I have to get normal Daz due home

> soon, and we can not sleep at the heart ward she is on they said

> they dont have the room, because they have squashed two babies in

> the most teeniest cupboard!!!!

>

> Lesley x

>

[Guest guest]

Oh, Lesley, you remind me of things in the past. Our is now 21. Yes,

her birthday has remained hard all of these years. I don't know why but

that's the way I have always felt. Perhaps it's because Andy's and my

parents died in the same month was born (different years, but the

anniversaries still come). As years have gone by, I think I've found that the

b-day itself is the problem but that celebration is now coming naturally (my

b-day is one day before K's).

I think the crying is something you might find comforting in time. As much

as I hate the pain, it is still somehow reassuring to know that our precious

child caused angst but tremendous joy as well. This took time.

I guess I've come to the conclusion that our pain and joy are just mixed

together. It doesn't help much, but I can smile a lot now. I hope I've made

at least a bit of sense.

Martha - sent with much, much feeling.

[Guest guest]

:):)i rekcon you tears could be course shes made it to one!!!!!!1 course

even i didnt think she would by some of your posts dont mean to be negative

but tahts the truth of it all i just didnt think it was posible i knwo i

hoped would be but still there are times on this list when i think that it

might not happen and thats just the sad truth of it all hugs ellen

>

> Oh, Lesley, you remind me of things in the past. Our is now 21.

> Yes,

> her birthday has remained hard all of these years. I don't know why but

> that's the way I have always felt. Perhaps it's because Andy's and my

> parents died in the same month was born (different years, but the

> anniversaries still come). As years have gone by, I think I've found that

> the

> b-day itself is the problem but that celebration is now coming naturally

> (my

> b-day is one day before K's).

> I think the crying is something you might find comforting in time. As

> much

> as I hate the pain, it is still somehow reassuring to know that our

> precious

> child caused angst but tremendous joy as well. This took time.

> I guess I've come to the conclusion that our pain and joy are just mixed

> together. It doesn't help much, but I can smile a lot now. I hope I've

> made

> at least a bit of sense.

> Martha - sent with much, much feeling.

>

>

>

>

[Guest guest]

Dear Kim

A touching and very accurate account of how I feel and also how you

and others have grief throughout life your dad and brother for

example, my dad died when I was 16 of cancer of the oesophagus, and

i cry every year on that day but like you say a necssary process

that makes me feel so much better when I have done that day.

I think yesterday was too much, I am fine today and feel relieved

its over, today I am off college and will make sure the rest of the

day is with Amelie. I know i will be buzzing by tonight.

I am relieved also that you all feel i will get to enjoy her

birthdays thats reassuring because you all must have felt like this

on the first one, but because your chargers are older you clearly

have lots of great days with them, and this is what I am so

desperate for.

It will come soon i hope.

thanks so much and yes im crying as i type!!

Love Lesleyx

>

> > Dear All

> >

> > I have got to get through loads of posts tonight. i need to do

this

> > one first before Darren gets back from the hospital!!

> >

> > Today was supposed to be the most special day of the year, for us

> > all really, especially after the 16th Dec, to have her still here

> > and looking good was all and more than we could have dreamed of.

> >

> > SO WHY HAVE I SPENT ALL DAY SECRETLY CRYING, AND AT EVERY

> > OPPORTUNITY.

> >

> > I feel that all my other childrens birthdays always take me back

to

> > that day in hospital that very moment they come into the world,

all

> > the precious little things you will never forget, the weight the

> > time, the head circumference, the first feed,every year one of

them

> > gets older i am so happy and that day floods back with millions

of

> > happy memories. And I have a huge feeling of wow i did that I

gave

> > birth and grew and nutured her,

> >

> > TODAY HAS BEEN AWFUL, I HAVE HAD TO HIDE MY FEELINGS FROM MY KIDS

> > AND DAZ.

> >

> > We took the girls at 6am to the ward to do balloons and banners

> > before school then i stayed with her alone whilst Daz got them

back,

> > then he came back so i could get to college, then i went back so

he

> > could have a break and so on.

> >

> > But all day I kept thinking back to her birth i could not muster

any

> > happyness just sadness, pity, sorrow, I knew the instance she was

> > born something wasnt right, but they all kept reasurring me, a

> > mother knows these things , intuition, i had carried three

others, I

> > feel robbed of this day, because we all cried this day all day,

so I

> > can not visualise any smiles from Darren or the girls just pain

> > etched on faces, and then I declined to see visitors for two

whole

> > weeks, because every day went from bad to worse.

> >

> > I just want this day over quickly, even all your lovely bithday

> > wishes made me feel sad, is this the norm???

> >

> > Will every birthday feel like this one???

> >

> > I dont think this evening has helped, last year I enrolled for a

> > counselling course to strengthen my University application and it

> > was the first lecture tonight, and that left me feeling sad as

well,

> > I dont know about learning to counsel i think I need some

myself!!

> >

> > Right thats this one out the way I have to get normal Daz due

home

> > soon, and we can not sleep at the heart ward she is on they said

> > they dont have the room, because they have squashed two babies in

> > the most teeniest cupboard!!!!

> >

> > Lesley x

> >

> >

> >

> >

> >

> > Membership of this email support groups does not constitute

membership in the

> > CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> > For information about the CHARGE Syndrome

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

> > please contact marion@c... or visit

> > the web site at http://www.chargesyndrome.org - for CHARGE

Syndrome Canada

> > information and membership, please visit

http://www.chargesyndrome.ca or email

> > info@c... .

> > 8th International

> > CHARGE Syndrome Conference, July, 2007. Information will be

available at

> > www.chargesyndrome.org or by calling 1-.

> >

[Guest guest]

Hi Lesley,

I think Kim and Bonnie's replies hit the nail on the head for me. Sadly I

can't write anything half as sophisticated or emotive!

However I wanted to tell you that I hated 's first birthday for all the

reasons they mentioned, and it really was quite a horrible day (in the inner

turmoil of my mind at least!) We held a party 2 days before and had about

100 people, it was ok...it passed in a bit of a blur to be honest..just

making sure everyone was happy and had drinks etc...and slept throught

the whole party in his buggy.

Then when his actual brithday came 2 days later I was in the most foul,

depressed, miserable mood. And it was compounded by the feeling that I

SHOULD be feeling happy, joyous etc..and because I wasn't I also feel huge

guilt. I mean what kind of mum doesn't feel like celebrating her own babies

b'day?! So it was entirely totally dreadful. Even the next week or so

(probably longer) I felt on a real downer, cheated of the blissful first

year as Mum which was had been expecting. I was p*ssed right off and angry

again, and in a bitter fed up mood! It wasn't pleasant!

Anyway, fast forward to B'day number 2. (This was last October). This time I

prepared to feel " mixed " feelings marking this anniversary of so much

despair. Once again we held a family party but on a much smaller scale -

jsut 12 of us at home. It was a nice day! I truly enjoyed it. Then 2 days

later on jacob's real 2nd Birthday we didn't mark it. I went to work as

usual (it was one of my 2 regular days in the office), people thought it was

a little strange " you're working on 's birthday?! " again I felt a

little low but no tears, nowhere near the feeling of grief! By going gently

on myself now, I feel by the time is actually aware it is his birthday

I will be able to happily celebrate it with him with no reservations.

So a massive hug to you.....and Amelie.

And as everyone says it does get better.....and better...and better!

Love is (Mum to 2)

>

> Dear All

>

> I have got to get through loads of posts tonight. i need to do this

> one first before Darren gets back from the hospital!!

>

> Today was supposed to be the most special day of the year, for us

> all really, especially after the 16th Dec, to have her still here

> and looking good was all and more than we could have dreamed of.

>

> SO WHY HAVE I SPENT ALL DAY SECRETLY CRYING, AND AT EVERY

> OPPORTUNITY.

>

> I feel that all my other childrens birthdays always take me back to

> that day in hospital that very moment they come into the world, all

> the precious little things you will never forget, the weight the

> time, the head circumference, the first feed,every year one of them

> gets older i am so happy and that day floods back with millions of

> happy memories. And I have a huge feeling of wow i did that I gave

> birth and grew and nutured her,

>

> TODAY HAS BEEN AWFUL, I HAVE HAD TO HIDE MY FEELINGS FROM MY KIDS

> AND DAZ.

>

> We took the girls at 6am to the ward to do balloons and banners

> before school then i stayed with her alone whilst Daz got them back,

> then he came back so i could get to college, then i went back so he

> could have a break and so on.

>

> But all day I kept thinking back to her birth i could not muster any

> happyness just sadness, pity, sorrow, I knew the instance she was

> born something wasnt right, but they all kept reasurring me, a

> mother knows these things , intuition, i had carried three others, I

> feel robbed of this day, because we all cried this day all day, so I

> can not visualise any smiles from Darren or the girls just pain

> etched on faces, and then I declined to see visitors for two whole

> weeks, because every day went from bad to worse.

>

> I just want this day over quickly, even all your lovely bithday

> wishes made me feel sad, is this the norm???

>

> Will every birthday feel like this one???

>

> I dont think this evening has helped, last year I enrolled for a

> counselling course to strengthen my University application and it

> was the first lecture tonight, and that left me feeling sad as well,

> I dont know about learning to counsel i think I need some myself!!

>

> Right thats this one out the way I have to get normal Daz due home

> soon, and we can not sleep at the heart ward she is on they said

> they dont have the room, because they have squashed two babies in

> the most teeniest cupboard!!!!

>

> Lesley x

>

>

>

>

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or

> email info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Dearest Bonnie

Wonderful words of wisdom, I am crying all the posts this morning

are positive and most important, I no longer feel worried about

yesterday and the sadness and crying, your right look at Patty!

I called the ward room a teeny cupboard ( do you not have cupboards)

because thats how small it is, were like sardines in a tin can!!

does that give you a better picture?

I hope youve heard of sardines!!

I wish i was as strong as you guys on here, I will get there Im

sure, i just want her home for long enough to relax swallow my own

food with out it going down in lumps all the time!! thats the only

way to describe every day here!

Love Lesley

>

> Lesley,

>

> Happy Birthday to Miss Amelie.

>

> Why are you so sad? Because your daughter has suffered and you

couldn't stop

> it. Sure you made things better but you couldn't stop it and you

couldn't

> fix it to make it all just go away. It's not your fault. You've

done the best

> you could so far. Do you have more to give? You bet. Don't

question that,

> it just happens.

>

> Why are you in pain? Because you realize that life is fleeting

and so very

> precious. Because you realize how terribly much you love all your

children.

> But you have lost a part of your ignorance of what it is like to

be on the edge

> and worse yet, for Amelie to live on the edge.

>

> The moment Patty was born I too knew something was wrong with

her. I cried.

> I couldn't help it. I felt she was born too soon and it was my

fault to let

> her " out. " She was full term but it was just a feeling. When I

think of her

> birth I remember the fear. When I think of Kris I remember

looking to the

> future of years and years of joy. With Patty we had to look at

moment to moment,

> day to day, and then now out of nowhere here we are. She's 21!

It's ok to

> not be totally overjoyed with her birth. That is just reality.

>

> Why are you afraid? Because you want answers. You want to know

what life

> will be like for Amelie, your other children and for you. But you

won't get

> those answers until you live it. Don't question too much. Our

lives are

> different but they are not horrible. They're just different.

Actually I think they

> are more wonderful than " normal " lives. So just live it.

>

> Why do you cry?

>

> Because finally you know what love is. True, beautiful, precious,

but

> delicate love.

>

> To know and to give this love for a moment, a year, a lifetime,

forever is a

> precious gift that has been given to you. It is intense. Few

understand the

> depth of loving a child so much you would give your life for them

just so they

> can breathe, swallow, smile, or just be. You have given up

yourself for your

> child. You've done it for a year now and you're afraid of

tomorrow. But

> tomorrow comes. Love her today. Love all your children and your

husband today.

> Then, well, tomorow and the rest just leads on in. Will you have

the

> strength to continue on to be the best mom to your daughter and

all your children.

> Yes. So be happy with the right here and now. Then be proud to

look back and

> feel all the emotions both good and bad. It's human.

>

> Will you always feel this way? To be honest those feelings remain

at the

> surface of your skin forever. But not as horribly intense. It is

better though

> than you can ever imagine right now. Life is beautiful most of

the time. And

> yes, all of it is totally normal.

>

> So why are you sad? BECAUSE YOU ARE MORE THAN JOYFUL and few

understand your

> joy!

>

> Happy Birthday to Amelie. " It was a very good year. "

>

>

> Oh and by the way, what in the world do you mean by squashing

babies in teeny

> cupboards?

>

>

> Bonnie, mom to a 23, Patty CHARGE 21, and wife to

>

>

>

[Guest guest]

Dearest Ellen

I know why Amelie made it to 1, it was all the hugs and cuddles you

all send her, and the prayers and support, especially yours!!!

I tell everyone in the medical field when they are surprised shes

still her, is due to her extended charge family all around the

world, a fact we are so proud to be part of, and i make sure

everyone i come into contact with knows this fact!

LOts of love lol

Lesley

> >

> > Oh, Lesley, you remind me of things in the past. Our is

now 21.

> > Yes,

> > her birthday has remained hard all of these years. I don't know

why but

> > that's the way I have always felt. Perhaps it's because Andy's

and my

> > parents died in the same month was born (different years,

but the

> > anniversaries still come). As years have gone by, I think I've

found that

> > the

> > b-day itself is the problem but that celebration is now coming

naturally

> > (my

> > b-day is one day before K's).

> > I think the crying is something you might find comforting in

time. As

> > much

> > as I hate the pain, it is still somehow reassuring to know that

our

> > precious

> > child caused angst but tremendous joy as well. This took time.

> > I guess I've come to the conclusion that our pain and joy are

just mixed

> > together. It doesn't help much, but I can smile a lot now. I

hope I've

> > made

> > at least a bit of sense.

> > Martha - sent with much, much feeling.

> >

> >

> >

> >

[Guest guest]

well this is true we do all have so much support we all have gone through

the same things at one time or another note to bonnie and kim and linda ive

got soem thoughts on transitioning but it will have to wait course theres a

storm brewing jsut here migth post thoughts tomorrwo but anyway storm or no

storm ever singleperson in this group is in my heart love you all xxxxxxxx

>

> Dearest Ellen

>

> I know why Amelie made it to 1, it was all the hugs and cuddles you

> all send her, and the prayers and support, especially yours!!!

>

> I tell everyone in the medical field when they are surprised shes

> still her, is due to her extended charge family all around the

> world, a fact we are so proud to be part of, and i make sure

> everyone i come into contact with knows this fact!

>

> LOts of love lol

> Lesley

>

>

> > >

> > > Oh, Lesley, you remind me of things in the past. Our is

> now 21.

> > > Yes,

> > > her birthday has remained hard all of these years. I don't know

> why but

> > > that's the way I have always felt. Perhaps it's because Andy's

> and my

> > > parents died in the same month was born (different years,

> but the

> > > anniversaries still come). As years have gone by, I think I've

> found that

> > > the

> > > b-day itself is the problem but that celebration is now coming

> naturally

> > > (my

> > > b-day is one day before K's).

> > > I think the crying is something you might find comforting in

> time. As

> > > much

> > > as I hate the pain, it is still somehow reassuring to know that

> our

> > > precious

> > > child caused angst but tremendous joy as well. This took time.

> > > I guess I've come to the conclusion that our pain and joy are

> just mixed

> > > together. It doesn't help much, but I can smile a lot now. I

> hope I've

> > > made

> > > at least a bit of sense.

> > > Martha - sent with much, much feeling.

> > >

> > >

> > >

> > >

[Guest guest]

i realy hope the storm gets to our dams oh well

>

> well this is true we do all have so much support we all have gone through

> the same things at one time or another note to bonnie and kim and linda ive

> got soem thoughts on transitioning but it will have to wait course theres a

> storm brewing jsut here migth post thoughts tomorrwo but anyway storm or no

> storm ever singleperson in this group is in my heart love you all xxxxxxxx

>

>

> >

> > Dearest Ellen

> >

> > I know why Amelie made it to 1, it was all the hugs and cuddles you

> > all send her, and the prayers and support, especially yours!!!

> >

> > I tell everyone in the medical field when they are surprised shes

> > still her, is due to her extended charge family all around the

> > world, a fact we are so proud to be part of, and i make sure

> > everyone i come into contact with knows this fact!

> >

> > LOts of love lol

> > Lesley

> >

> >

> > > >

> > > > Oh, Lesley, you remind me of things in the past. Our is

> > now 21.

> > > > Yes,

> > > > her birthday has remained hard all of these years. I don't know

> > why but

> > > > that's the way I have always felt. Perhaps it's because Andy's

> > and my

> > > > parents died in the same month was born (different years,

> > but the

> > > > anniversaries still come). As years have gone by, I think I've

> > found that

> > > > the

> > > > b-day itself is the problem but that celebration is now coming

> > naturally

> > > > (my

> > > > b-day is one day before K's).

> > > > I think the crying is something you might find comforting in

> > time. As

> > > > much

> > > > as I hate the pain, it is still somehow reassuring to know that

> > our

> > > > precious

> > > > child caused angst but tremendous joy as well. This took time.

> > > > I guess I've come to the conclusion that our pain and joy are

> > just mixed

> > > > together. It doesn't help much, but I can smile a lot now. I

> > hope I've

> > > > made

> > > > at least a bit of sense.

> > > > Martha - sent with much, much feeling.

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Oh, Lesley, I feel bad for you, but you're not alone! I cried off and on all

day on 's first birthday. We had this nice party for her at our house with

family and friends, and while I felt I should have been so happy, I was so sad!

I tried my best to put on a show for family and friends, but I would have to

keep excusing myself to go take a cry and pull myself together again. You know,

though, I don't think it was a cry of sadness over 's life or CHARGE or

anything like that--I think it was more the enormity of just looking back over

that past year and everything finally just hitting me in the face! I honestly

hadn't had time to even think about all we had been through in that past year,

and it all just came rushing in on that day.

You know, another CHARGE mom and I were just talking earlier this week about

how birthdays are still melancholy events for us each year. It's a time for

celebrating our kids' achievements and accomplishments, but it's also one of

those times when it makes you think about the challenges they've faced and that

still lie ahead. The one thing I can tell you is, though, that it does get

better with each passing year--or at least it has for me. As time passes and

Amelie gets past the medically fragile stage and starts making strides, you will

celebrate her accomplishments more and more and fret less over the future,

knowing that she will do things in her own time and will amaze you in her own

way.

I'm sorry the day wasn't better for you. Maybe a nice celebration once she

gets home from the hospital will help rekindle the birthday spirit for you!

Hugs to you,

, mom to (4 next week!)

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

Yahoo! Photos – Showcase holiday pictures in hardcover

Photo Books. You design it and we’ll bind it!

[Guest guest]

Ellen,

You are right that sometimes things seem hopeless to us as well when we read

posts, but that doesn't take in that fighting spirit of CHARGE and how you

all seem to bounce back time and time again, until those days are a distant

memory. Look how well Max is doing, with his premie lungs to complicate

things, and now he is home with his mommy doing great. JD is doing well and

before we know it Amelie will be home with Lesley and Darren and then she

will be a 20yo typing on the list. (Smile)

Kim

> :):)i rekcon you tears could be course shes made it to one!!!!!!1 course

> even i didnt think she would by some of your posts dont mean to be negative

> but tahts the truth of it all i just didnt think it was posible i knwo i

> hoped would be but still there are times on this list when i think that it

> might not happen and thats just the sad truth of it all hugs ellen

>

>

>>

>> Oh, Lesley, you remind me of things in the past. Our is now 21.

>> Yes,

>> her birthday has remained hard all of these years. I don't know why but

>> that's the way I have always felt. Perhaps it's because Andy's and my

>> parents died in the same month was born (different years, but the

>> anniversaries still come). As years have gone by, I think I've found that

>> the

>> b-day itself is the problem but that celebration is now coming naturally

>> (my

>> b-day is one day before K's).

>> I think the crying is something you might find comforting in time. As

>> much

>> as I hate the pain, it is still somehow reassuring to know that our

>> precious

>> child caused angst but tremendous joy as well. This took time.

>> I guess I've come to the conclusion that our pain and joy are just mixed

>> together. It doesn't help much, but I can smile a lot now. I hope I've

>> made

>> at least a bit of sense.

>> Martha - sent with much, much feeling.

>>

>>

>>

>>

[Guest guest]

Lesley-

I read but didn't have time to post last night. Of course, everyone took

all my words! I had tears as I read all the replies to you. You see, those

feelings and tears do lie just under the surface. They crop up less and

less. Sometimes I can predict when they'll come. Other times, I am caught

off guard. But I am better able to manage it over time. I know the grief

is there. I know it will come and go. So when it does come, I can be

comfortable in knowing it won't stay. Does that make sense?

There is no way to separate the grief from the joy. When I look at Aubrie

or think of her, even in the best times, I can't forget all the crud

surrounding us. All of the good stuff happens in the midst of or in spite

of all the bad stuff. It's not a pity feeling. It's a sadness -- a wish

that things could be different. But at the same time, I wouldn't want it to

be different because CHARGE has made her who she is and me who I am and our

family what it is. Very complex and intertwined feelings of joy and pain.

I loved your comment about the extended CHARGE family. That's huge for me.

And so hard to explain to outsiders. Knowing that we have this whole family

sharing this journey makes it so incredibly easier. Just as our " real "

family can make our lives better by sharing it with us and supporting us,

our CHARGE family makes a difference just by being here. When you can go to

a conference and feel that support in real life and put faces to the names,

it's all the better.

There will come a time when you will be able to swallow your food without it

being a lump. I promise. I am thinking that you need Amelie to be home and

thriving before that can happen. For most of us, our kids were home and

beginning the journey of real childhood/infanthood by their 1st birthday.

So we were able to celebrate being over the hospitalization hurdle and

moving on. You haven't reached that celebration yet. But it will come.

And when you see Amelie becoming a baby instead of a patient (I love how

Max's mom said that!), things will begin to change.

I remember when I began seeing Aubrie as a kid rather than a whatever... In

the beginning, at her therapy sessions etc I was looking at her from a

therapy point of view -- watching how she performed, what we needed to work

on, always analytical. Then, at some point, and I can remember this moment

vividly, we were doing OT. I could only see how adorable she was, how much

fun she was having, how hard she was trying... and couldn't take my " mommy "

hat off and put the " therapy " hat on. The OT said to me that it was how it

should be. She would do the analytical, therapist work and I should be the

mom. So she allowed it, encouraged it, and celebrated it with me rather

than making me feel guilt for not doing enough or not trying hard enough or

whatever. It was a powerful moment for me.

At some point, you will be able to embrace being Amelie's mama rather than

some kind of nurse. She will change from being a bundle of medical issues

(which is how I saw Aubrie as an infant) to being your baby full-time.

I gotta go get my day started. I think we could all go on and on about

this. It's so raw for all of us no matter how far down the road. Those

intense feelings surrounding our kids are huge and complex and no one gets

it except other parents of kids with challenges. No matter how many times I

share it, I am never done. You know, some issues I need to talk over and

then I can put them to rest. This one never rests.

Hugs-

Michele W

Aubrie's mom

[Guest guest]

Kim,

" Letting out the pain,

makes way for more good to come in. " Oh how I love that one. Nice job but I

was expecting nothing less from you.

I missed something here. What is new with Tyler?

Bonnie, mom to a 23, Patty CHARGE 21, and wife to

[Guest guest]

dearest Ellen

I hope if the storms come you are inside nice and cosy and safe,

with lots of hot chocolate and muffins, yummmmmy

Lol

Lesley xxx

> > > > >

> > > > > Oh, Lesley, you remind me of things in the past. Our

is

> > > now 21.

> > > > > Yes,

> > > > > her birthday has remained hard all of these years. I don't

know

> > > why but

> > > > > that's the way I have always felt. Perhaps it's because

Andy's

> > > and my

> > > > > parents died in the same month was born (different

years,

> > > but the

> > > > > anniversaries still come). As years have gone by, I think

I've

> > > found that

> > > > > the

> > > > > b-day itself is the problem but that celebration is now

coming

> > > naturally

> > > > > (my

> > > > > b-day is one day before K's).

> > > > > I think the crying is something you might find comforting

in

> > > time. As

> > > > > much

> > > > > as I hate the pain, it is still somehow reassuring to know

that

> > > our

> > > > > precious

> > > > > child caused angst but tremendous joy as well. This took

time.

> > > > > I guess I've come to the conclusion that our pain and joy

are

> > > just mixed

> > > > > together. It doesn't help much, but I can smile a lot

now. I

> > > hope I've

> > > > > made

> > > > > at least a bit of sense.

> > > > > Martha - sent with much, much feeling.

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

Your sadness is appropraite to me now. LIfe is really hard at times. I had

a really bad day agian today. may need spien surgery this would be

surgery # 36. She is 10. we went to the orthopedic for a f/u visit today and

was blindsided by this spine issue. I was by myself with her, (not knowing

it was more than a f/u, my husband did not take off from work. I received

comfort from a nother family that was waiting to be have casts made for their

son. They told me she is beautiful and that she has made it though so much

that this is a sign of how strong erika is. She is, but at tiems i feel how

much mroe can any of us take. I am tired, so very tired, i am burnt out and

sad. is happy and beautiful, but life is really rough at times. I do

beleive our children are special, very special and they are given to us for a

reason, not everyone could do for our children what we do, they were chosen for

us and we were chosen for them.

I cried all the way home today, but tomorrow will be a new day and i will

wake up and get back at it.

Good luck and stay strong, we are all here for each other and this helps.

cathie, mom to erika 10 CHARGEr

[Guest guest]

I feel so good knowing that lots of mums had that same awful day,

now I feel really normal and back to my usual chatty self,

I posted you yesterday but I cant see it so if its there ignore this

next bit,

I noticed will be 4 next week, whats the date, My birthday is

the 23rd Jan and Amelie was due on my birthday, but i insisted on a

section because of poor foetal movements.

It seems to me that all the best girlies are born aquarians- sorry

to everyone not in this catagory, you cant help mother nature and

your due dates, we are simply super, what more can I say, the best

birthday for me this year would be to get Amelie home before then

and we can party together, especially after her performance last

year, I'l smack her bottom when shes older!!

Love Lesley & Amelie and all the Aquarian girlies out there xxxx

>

> Oh, Lesley, I feel bad for you, but you're not alone! I cried off

and on all day on 's first birthday. We had this nice party

for her at our house with family and friends, and while I felt I

should have been so happy, I was so sad! I tried my best to put on

a show for family and friends, but I would have to keep excusing

myself to go take a cry and pull myself together again. You know,

though, I don't think it was a cry of sadness over 's life or

CHARGE or anything like that--I think it was more the enormity of

just looking back over that past year and everything finally just

hitting me in the face! I honestly hadn't had time to even think

about all we had been through in that past year, and it all just

came rushing in on that day.

>

> You know, another CHARGE mom and I were just talking earlier

this week about how birthdays are still melancholy events for us

each year. It's a time for celebrating our kids' achievements and

accomplishments, but it's also one of those times when it makes you

think about the challenges they've faced and that still lie ahead.

The one thing I can tell you is, though, that it does get better

with each passing year--or at least it has for me. As time passes

and Amelie gets past the medically fragile stage and starts making

strides, you will celebrate her accomplishments more and more and

fret less over the future, knowing that she will do things in her

own time and will amaze you in her own way.

>

> I'm sorry the day wasn't better for you. Maybe a nice

celebration once she gets home from the hospital will help rekindle

the birthday spirit for you!

>

> Hugs to you,

> , mom to (4 next week!)

>

>

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

> Yahoo! Photos – Showcase holiday pictures in hardcover

> Photo Books. You design it and we'll bind it!

>

>

[Guest guest]

I will make sure Amelie will be active on the list, and hopefully

Ellen you will be old enough to share other stages of charge to help

her through her first period!! you know us mums its a topic i dont

fancy, but your so open and caring I will let you help me with this

one!!

Love lol

Lesley

> >>

> >> Oh, Lesley, you remind me of things in the past. Our is

now 21.

> >> Yes,

> >> her birthday has remained hard all of these years. I don't know

why but

> >> that's the way I have always felt. Perhaps it's because Andy's

and my

> >> parents died in the same month was born (different years,

but the

> >> anniversaries still come). As years have gone by, I think I've

found that

> >> the

> >> b-day itself is the problem but that celebration is now coming

naturally

> >> (my

> >> b-day is one day before K's).

> >> I think the crying is something you might find comforting in

time. As

> >> much

> >> as I hate the pain, it is still somehow reassuring to know that

our

> >> precious

> >> child caused angst but tremendous joy as well. This took time.

> >> I guess I've come to the conclusion that our pain and joy are

just mixed

> >> together. It doesn't help much, but I can smile a lot now. I

hope I've

> >> made

> >> at least a bit of sense.

> >> Martha - sent with much, much feeling.

> >>

> >>

> >>

> >>

[Guest guest]

Michele,

As i have probably said to most, i feel so norm right now, yesterday

panic, today a calm, because like youve said its still makes all of

you cry, and you are further down the road, so maybe next year i

will be prepared to embrace a cry and still enjoy the day to an

extent.

As for my extended family, i am noticing more and more, how I need

to speak on here before the people around me at home, my friends and

family do empathise with us, but they will never ever know how it

is, and they just dont get it, and then i get irritated by friends

and family.

My first port of call every am and pm is to check in when I can, it

makes me feel sane, and Darren is also realising how much i need to

be on here, at first I think he thought it was too much, but I need

all of you because, you live the same life too every day, it might

be slightly different, but the level of understanding is paramount.

Thanks for sharing your story

Love lesley x

>

> Lesley-

> I read but didn't have time to post last night. Of course,

everyone took

> all my words! I had tears as I read all the replies to you. You

see, those

> feelings and tears do lie just under the surface. They crop up

less and

> less. Sometimes I can predict when they'll come. Other times, I

am caught

> off guard. But I am better able to manage it over time. I know

the grief

> is there. I know it will come and go. So when it does come, I

can be

> comfortable in knowing it won't stay. Does that make sense?

>

> There is no way to separate the grief from the joy. When I look

at Aubrie

> or think of her, even in the best times, I can't forget all the

crud

> surrounding us. All of the good stuff happens in the midst of or

in spite

> of all the bad stuff. It's not a pity feeling. It's a sadness --

a wish

> that things could be different. But at the same time, I wouldn't

want it to

> be different because CHARGE has made her who she is and me who I

am and our

> family what it is. Very complex and intertwined feelings of joy

and pain.

>

> I loved your comment about the extended CHARGE family. That's

huge for me.

> And so hard to explain to outsiders. Knowing that we have this

whole family

> sharing this journey makes it so incredibly easier. Just as

our " real "

> family can make our lives better by sharing it with us and

supporting us,

> our CHARGE family makes a difference just by being here. When you

can go to

> a conference and feel that support in real life and put faces to

the names,

> it's all the better.

>

> There will come a time when you will be able to swallow your food

without it

> being a lump. I promise. I am thinking that you need Amelie to

be home and

> thriving before that can happen. For most of us, our kids were

home and

> beginning the journey of real childhood/infanthood by their 1st

birthday.

> So we were able to celebrate being over the hospitalization hurdle

and

> moving on. You haven't reached that celebration yet. But it will

come.

> And when you see Amelie becoming a baby instead of a patient (I

love how

> Max's mom said that!), things will begin to change.

>

> I remember when I began seeing Aubrie as a kid rather than a

whatever... In

> the beginning, at her therapy sessions etc I was looking at her

from a

> therapy point of view -- watching how she performed, what we

needed to work

> on, always analytical. Then, at some point, and I can remember

this moment

> vividly, we were doing OT. I could only see how adorable she was,

how much

> fun she was having, how hard she was trying... and couldn't take

my " mommy "

> hat off and put the " therapy " hat on. The OT said to me that it

was how it

> should be. She would do the analytical, therapist work and I

should be the

> mom. So she allowed it, encouraged it, and celebrated it with me

rather

> than making me feel guilt for not doing enough or not trying hard

enough or

> whatever. It was a powerful moment for me.

>

> At some point, you will be able to embrace being Amelie's mama

rather than

> some kind of nurse. She will change from being a bundle of

medical issues

> (which is how I saw Aubrie as an infant) to being your baby full-

time.

>

> I gotta go get my day started. I think we could all go on and on

about

> this. It's so raw for all of us no matter how far down the road.

Those

> intense feelings surrounding our kids are huge and complex and no

one gets

> it except other parents of kids with challenges. No matter how

many times I

> share it, I am never done. You know, some issues I need to talk

over and

> then I can put them to rest. This one never rests.

>

> Hugs-

> Michele W

> Aubrie's mom

>

[Guest guest]

Lesley-

Early on, I was also very impatient with my friends and family who didn't

get it and who worried about mundane things like cleaning closets and broken

fingernails. I've gotten past that as time has gone on. I guess because I

have the luxury of those worries some of the time and because I remember

when my life was mundane too. Anyway- for me, that irritation improved. I

hope it will for you too.

Here's a story. A friend's daughter had her birthday party at the bowling

alley -- picture gobs of 1st graders -- boys and girls on all the lanes.

The parents there were asked to help by manning a lane and helping the kids.

After just a moment of it, I had to get a substitute for myself. We had

just found out about Aubrie's need for hip surgery. So my feelings were

pretty raw. Those kids were annoying me with their little 1st grade ways.

I was mad at all of them just for being able to walk and talk. Luckily, my

friend understood my need to just leave. Aubrie had a great time and had no

clue that her mom was loosing it.

Michele W

[Guest guest]

Cathie-

We were blindsided with Aubrie's hip surgery too. I know that feeling so

well. I'll bet most of us do. There's anxiety with every dr visit. Any

little " check up " can be a brick wall waiting to jump in front us.

I hope the sun is out in your world tomorrow.

Michele W

Aubrie's mom

[Guest guest]

Lesley,

's birthday is next Tuesday, January 17th. I honestly can't believe

she'll be 4! I can't believe it's passed by so quickly.

Here's hoping that little Amelie gets home next week so you and she can have

an all-out proper birthday party!

Love,

, mom to (4 next week)

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

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