RE: Effect of family birth after my daughter's dramatic birth

[Guest guest]

I understand completely. One of my friends, who is due in May, constantly

complains about her pregnancy. She says she hopes for a preemie just so she

can be done with it. I was floored! My twins were 7 1/2 weeks early! I tried

my hardest to take them to full term! Twins mind you...I was very

uncomfortable! It maddens me to here things like that come out of her mouth.

But, even more painful are the comments of " Gosh, I just hope I don't get

anything like you have " ....like it's contagious! I know what she means, but

some tactfulness would be nice.

Anyhow, I want to thank each and ever one of you for allowing me to speak so

freely. I actually cut and pasted some of these posts about the effects of a

dramatic birth, and sent it off to my (sometimes tactless) friend. I think

it will give her a good understanding of why I am so disassociated with

things like baby showers and visiting new babies in the hospital. I told her

how thankful I am to have my support group in all of you. You have no idea

how much peace I have encountered in my chaotic world over the last few

weeks. I should have joined a long time ago! You mothers are soldiers to

those of us who feel like they are weak. And, you CHARGErs, who speak to us,

are so inspiring. I look forward to Ellen's sunny posts. Chantelle, you are

a fighter, and I'm so proud to see how you take care of things (congrats on

your disability service funding!). Chip, you a have a good head on your

shoulders...you'll find yourself the perfect job! , you are such a

smart lady, it is so inspiring. When I read about you all, it reminds me

that everything is going to be okay. So, thanks to EACH and EVERY one of

you!

, mommy to Meagan (CHaRgE) and 17 months, and big brother

3 1/2 years, married to the best daddy in the world for 9 years

-- Re: Effect of family birth after my daughter's dramatic

> birth

>

>

>

> Yes! It hit me when I had to go back to by OBGYN for a check up (his

> office

> is in the same hospital I gave birth). I was leaving and witnessed a

> family

> going home with their new baby. Wow, did that hurt!!!!!!!!!! And, it

> will

> continue to happen again and again, but should be less painful.

>

> It's good that you had that cry! It's healthy! This is such a roller

> coaster and will continue to have ups and downs for many, many years.

>

> Bernie Hill, Mom of Amber 9 and cHARGE 6

>

> wrote:

> Not sure if other's have experienced this, but the other night, I got

> a call that my cousin was in labor with her baby. She has asked me to

> be the Godparent for her little girl, and I had all along planned to

> be at the hospital for the birth (my family is large, and we all sit

> vigil while someone is having a new family member!) At any rate, I

> was on my way to the hospital (alone) and all of a sudden just started

> crying such a deep emotional cry--I honestly was surprised at myself.

> I think I must have been grieving the happy birth process that I

> didn't have with Carmen, who was born so tiny, not breathing, and gray

> in color. I don't think I've really ever cried out since her birth,

> as I'm very action oriented and have been so focused on all of her

> needs. The reaction I had to my cousin's birth process really hit me

> hard--it was like I finally realized how sad I was that I didn't have

> a joyous moment for my daughter when she arrived. I think it provided

> some closure, really. Anyone else have this happen?

>

> B. mom to Zachary 4.5 years and Carmen 20 months (CHARGE)

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group 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 web site at http://www.chargesyndrome.org

>

> 8th International

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

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

>

>

>

>

[Guest guest]

I understand completely. One of my friends, who is due in May, constantly

complains about her pregnancy. She says she hopes for a preemie just so she

can be done with it. I was floored! My twins were 7 1/2 weeks early! I tried

my hardest to take them to full term! Twins mind you...I was very

uncomfortable! It maddens me to here things like that come out of her mouth.

But, even more painful are the comments of " Gosh, I just hope I don't get

anything like you have " ....like it's contagious! I know what she means, but

some tactfulness would be nice.

Anyhow, I want to thank each and ever one of you for allowing me to speak so

freely. I actually cut and pasted some of these posts about the effects of a

dramatic birth, and sent it off to my (sometimes tactless) friend. I think

it will give her a good understanding of why I am so disassociated with

things like baby showers and visiting new babies in the hospital. I told her

how thankful I am to have my support group in all of you. You have no idea

how much peace I have encountered in my chaotic world over the last few

weeks. I should have joined a long time ago! You mothers are soldiers to

those of us who feel like they are weak. And, you CHARGErs, who speak to us,

are so inspiring. I look forward to Ellen's sunny posts. Chantelle, you are

a fighter, and I'm so proud to see how you take care of things (congrats on

your disability service funding!). Chip, you a have a good head on your

shoulders...you'll find yourself the perfect job! , you are such a

smart lady, it is so inspiring. When I read about you all, it reminds me

that everything is going to be okay. So, thanks to EACH and EVERY one of

you!

, mommy to Meagan (CHaRgE) and 17 months, and big brother

3 1/2 years, married to the best daddy in the world for 9 years

-- Re: Effect of family birth after my daughter's dramatic

> birth

>

>

>

> Yes! It hit me when I had to go back to by OBGYN for a check up (his

> office

> is in the same hospital I gave birth). I was leaving and witnessed a

> family

> going home with their new baby. Wow, did that hurt!!!!!!!!!! And, it

> will

> continue to happen again and again, but should be less painful.

>

> It's good that you had that cry! It's healthy! This is such a roller

> coaster and will continue to have ups and downs for many, many years.

>

> Bernie Hill, Mom of Amber 9 and cHARGE 6

>

> wrote:

> Not sure if other's have experienced this, but the other night, I got

> a call that my cousin was in labor with her baby. She has asked me to

> be the Godparent for her little girl, and I had all along planned to

> be at the hospital for the birth (my family is large, and we all sit

> vigil while someone is having a new family member!) At any rate, I

> was on my way to the hospital (alone) and all of a sudden just started

> crying such a deep emotional cry--I honestly was surprised at myself.

> I think I must have been grieving the happy birth process that I

> didn't have with Carmen, who was born so tiny, not breathing, and gray

> in color. I don't think I've really ever cried out since her birth,

> as I'm very action oriented and have been so focused on all of her

> needs. The reaction I had to my cousin's birth process really hit me

> hard--it was like I finally realized how sad I was that I didn't have

> a joyous moment for my daughter when she arrived. I think it provided

> some closure, really. Anyone else have this happen?

>

> B. mom to Zachary 4.5 years and Carmen 20 months (CHARGE)

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group 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 web site at http://www.chargesyndrome.org

>

> 8th International

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

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

>

>

>

>

[Guest guest]

Me too ,

I found it awful on Amelies first birthday, the pain was unbearable,

I just kept wishing that day would end, kept taking me back to the

sadness whilst women around me were celebrating, I felt huge relief

when I posted on the listserv and the floods of 'this is normal'

came in it stopped me from going mad. I am dreading her next one and

its yonks away, but maybe each one will get a little easier.

hugs Lesley x

> > Not sure if other's have experienced this, but the other night,

I got

> > a call that my cousin was in labor with her baby. She has asked

me to

> > be the Godparent for her little girl, and I had all along

planned to

> > be at the hospital for the birth (my family is large, and we all

sit

> > vigil while someone is having a new family member!) At any

rate, I

> > was on my way to the hospital (alone) and all of a sudden just

started

> > crying such a deep emotional cry--I honestly was surprised at

myself.

> > I think I must have been grieving the happy birth process that I

> > didn't have with Carmen, who was born so tiny, not breathing,

and gray

> > in color. I don't think I've really ever cried out since her

birth,

> > as I'm very action oriented and have been so focused on all of

her

> > needs. The reaction I had to my cousin's birth process really

hit me

> > hard--it was like I finally realized how sad I was that I didn't

have

> > a joyous moment for my daughter when she arrived. I think it

provided

> > some closure, really. Anyone else have this happen?

> >

> > B. mom to Zachary 4.5 years and Carmen 20 months

(CHARGE)

> >

> >

> >

> >

> >

> >

> > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > http://www.imagestation.com/album/?id=2117043995

> >

> > Membership of this email support group 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 web site at http://www.chargesyndrome.org

> >

> > 8th International

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

available at

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

> >

> >

> >

> >

[Guest guest]

Me too ,

I found it awful on Amelies first birthday, the pain was unbearable,

I just kept wishing that day would end, kept taking me back to the

sadness whilst women around me were celebrating, I felt huge relief

when I posted on the listserv and the floods of 'this is normal'

came in it stopped me from going mad. I am dreading her next one and

its yonks away, but maybe each one will get a little easier.

hugs Lesley x

> > Not sure if other's have experienced this, but the other night,

I got

> > a call that my cousin was in labor with her baby. She has asked

me to

> > be the Godparent for her little girl, and I had all along

planned to

> > be at the hospital for the birth (my family is large, and we all

sit

> > vigil while someone is having a new family member!) At any

rate, I

> > was on my way to the hospital (alone) and all of a sudden just

started

> > crying such a deep emotional cry--I honestly was surprised at

myself.

> > I think I must have been grieving the happy birth process that I

> > didn't have with Carmen, who was born so tiny, not breathing,

and gray

> > in color. I don't think I've really ever cried out since her

birth,

> > as I'm very action oriented and have been so focused on all of

her

> > needs. The reaction I had to my cousin's birth process really

hit me

> > hard--it was like I finally realized how sad I was that I didn't

have

> > a joyous moment for my daughter when she arrived. I think it

provided

> > some closure, really. Anyone else have this happen?

> >

> > B. mom to Zachary 4.5 years and Carmen 20 months

(CHARGE)

> >

> >

> >

> >

> >

> >

> > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > http://www.imagestation.com/album/?id=2117043995

> >

> > Membership of this email support group 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 web site at http://www.chargesyndrome.org

> >

> > 8th International

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

available at

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

> >

> >

> >

> >

[Guest guest]

Me too ,

I found it awful on Amelies first birthday, the pain was unbearable,

I just kept wishing that day would end, kept taking me back to the

sadness whilst women around me were celebrating, I felt huge relief

when I posted on the listserv and the floods of 'this is normal'

came in it stopped me from going mad. I am dreading her next one and

its yonks away, but maybe each one will get a little easier.

hugs Lesley x

> > Not sure if other's have experienced this, but the other night,

I got

> > a call that my cousin was in labor with her baby. She has asked

me to

> > be the Godparent for her little girl, and I had all along

planned to

> > be at the hospital for the birth (my family is large, and we all

sit

> > vigil while someone is having a new family member!) At any

rate, I

> > was on my way to the hospital (alone) and all of a sudden just

started

> > crying such a deep emotional cry--I honestly was surprised at

myself.

> > I think I must have been grieving the happy birth process that I

> > didn't have with Carmen, who was born so tiny, not breathing,

and gray

> > in color. I don't think I've really ever cried out since her

birth,

> > as I'm very action oriented and have been so focused on all of

her

> > needs. The reaction I had to my cousin's birth process really

hit me

> > hard--it was like I finally realized how sad I was that I didn't

have

> > a joyous moment for my daughter when she arrived. I think it

provided

> > some closure, really. Anyone else have this happen?

> >

> > B. mom to Zachary 4.5 years and Carmen 20 months

(CHARGE)

> >

> >

> >

> >

> >

> >

> > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > http://www.imagestation.com/album/?id=2117043995

> >

> > Membership of this email support group 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 web site at http://www.chargesyndrome.org

> >

> > 8th International

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

available at

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

> >

> >

> >

> >

[Guest guest]

-

What you're feeling is so very normal! For us, I had Aubrie at age 38 or so

-- so not lots of friends babies coming after. But still there are those

moments. It's less intense and much less frequent now.

One time that sticks with me -- We had just found out as quite a shock that

Aubrie would need bilateral hip reconstruction -- a very big deal -- body

cast for 6-8 weeks -- blah blah. Then she went to a friend's daughter's

birthday party. Aubrie was in Kindergarten and this other girl was in first

grade. Well, you know how first grade girls can be. And Aubrie was

absolutely not like that at all and never will be because her nature is just

so naïve and pure. Anyway, the adults were asked to each take a lane and

help the kids bowl. I set myself up with a group and within minutes

realized I just couldn't. I was seething with anger at all these kids who

could walk -- how dare they! I had to leave. Thank goodness these were

good enough friends who understood without question.

Those moments of anger or sadness creep up unexpectedly. We have to accept

and honor them when they come and know that they will pass.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Me too!

" What I am finding more difficult for me now though is when I talk with

friends who are pregnant and they complain about their weight gain or their

aches and pains. I want to scream...ARE YOU KIDDING ME? But I try to be there

in the moment for them and rejoice in their " normal pregnancy " ...but I just feel

they are so naive and I just wish they would acknowledge what I endured. Does

that make sense? It's as though they don't think " this " could happen to them. "

But then I think back and remember when I was at the same place in my

pregnancy--complaining about the same things (I even went to the chiropracter

for my back pain). I was so naieve. But knowing then what I know now, would it

have done any good? I don't think so.

One thing I think of that helps me is that these other " girls " are just very

delicate. There is nothing wrong with being delicate, but if you are too

delicate you may not be strong enough to handle a birth or a baby who is not

your average " run-of-the mill. " We have the strong maternal " grit " that enables

us to handle the unexpected (pregnancy, birth, hospitalizations, unusual health

appliances, homes that seem more like hospitals with equipment & staff,

never-ending doctors appointments, and on and on...) with grace and dignity and

compassion. Not everyone could do that!

(mom to Evan 8 mos)

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

Yahoo! Mail

Bring photos to life! New PhotoMail makes sharing a breeze.

[Guest guest]

Oh those days of being " delicate " are now long aren't they?

If you had ever told me I would get divorced, move across country, spend a month

on bed rest in the hospital and then give birth to a baby with a million health

conditions...I would have thought there is ABSOLUTELY no way I will survive.

But here I am alive and kicking...a bit tired and sad on some days, but overall

doing ok. And actually on some days I am quite delighted...so happy to be Max's

mom and so proud of all that he has accomplished in such a short period of time.

I remember thinking in the first few months (I feel quite guilty admitting

this now) that Max and I were destined to live a lonely, miserable life...no one

would want to marry me with all my baggage and Max would never have a good daddy

(his " bio " dad is really involved). But now I am feeling more and more like who

wouldn't want to marry me...look at this amazing kiddo I have!!! He isn't going

to deter a good man, he will attract one!!!

It's amazing what life puts before us and how we learn to overcome and

survive. Now my worry is I not only want to survive, I want Max and I to

thrive.

But boy are there days that I just want to shake people and say DON'T YOU GET

IT???? You are soooo blessed to have a normal pregnancy, so blessed to be

happily married, so blessed to have a " normal " healthy child. Many people live

in a very sheltered world and they simply don't want to believe that " tragedy "

can happen to them too...it is random and unknown but it is part of life. Our

job is to help each other through it....

Key Storrs wrote:

Me too!

" What I am finding more difficult for me now though is when I talk with

friends who are pregnant and they complain about their weight gain or their

aches and pains. I want to scream...ARE YOU KIDDING ME? But I try to be there

in the moment for them and rejoice in their " normal pregnancy " ...but I just feel

they are so naive and I just wish they would acknowledge what I endured. Does

that make sense? It's as though they don't think " this " could happen to them. "

But then I think back and remember when I was at the same place in my

pregnancy--complaining about the same things (I even went to the chiropracter

for my back pain). I was so naieve. But knowing then what I know now, would it

have done any good? I don't think so.

One thing I think of that helps me is that these other " girls " are just very

delicate. There is nothing wrong with being delicate, but if you are too

delicate you may not be strong enough to handle a birth or a baby who is not

your average " run-of-the mill. " We have the strong maternal " grit " that enables

us to handle the unexpected (pregnancy, birth, hospitalizations, unusual health

appliances, homes that seem more like hospitals with equipment & staff,

never-ending doctors appointments, and on and on...) with grace and dignity and

compassion. Not everyone could do that!

(mom to Evan 8 mos)

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

Yahoo! Mail

Bring photos to life! New PhotoMail makes sharing a breeze.

[Guest guest]

Oh those days of being " delicate " are now long aren't they?

If you had ever told me I would get divorced, move across country, spend a month

on bed rest in the hospital and then give birth to a baby with a million health

conditions...I would have thought there is ABSOLUTELY no way I will survive.

But here I am alive and kicking...a bit tired and sad on some days, but overall

doing ok. And actually on some days I am quite delighted...so happy to be Max's

mom and so proud of all that he has accomplished in such a short period of time.

I remember thinking in the first few months (I feel quite guilty admitting

this now) that Max and I were destined to live a lonely, miserable life...no one

would want to marry me with all my baggage and Max would never have a good daddy

(his " bio " dad is really involved). But now I am feeling more and more like who

wouldn't want to marry me...look at this amazing kiddo I have!!! He isn't going

to deter a good man, he will attract one!!!

It's amazing what life puts before us and how we learn to overcome and

survive. Now my worry is I not only want to survive, I want Max and I to

thrive.

But boy are there days that I just want to shake people and say DON'T YOU GET

IT???? You are soooo blessed to have a normal pregnancy, so blessed to be

happily married, so blessed to have a " normal " healthy child. Many people live

in a very sheltered world and they simply don't want to believe that " tragedy "

can happen to them too...it is random and unknown but it is part of life. Our

job is to help each other through it....

Key Storrs wrote:

Me too!

" What I am finding more difficult for me now though is when I talk with

friends who are pregnant and they complain about their weight gain or their

aches and pains. I want to scream...ARE YOU KIDDING ME? But I try to be there

in the moment for them and rejoice in their " normal pregnancy " ...but I just feel

they are so naive and I just wish they would acknowledge what I endured. Does

that make sense? It's as though they don't think " this " could happen to them. "

But then I think back and remember when I was at the same place in my

pregnancy--complaining about the same things (I even went to the chiropracter

for my back pain). I was so naieve. But knowing then what I know now, would it

have done any good? I don't think so.

One thing I think of that helps me is that these other " girls " are just very

delicate. There is nothing wrong with being delicate, but if you are too

delicate you may not be strong enough to handle a birth or a baby who is not

your average " run-of-the mill. " We have the strong maternal " grit " that enables

us to handle the unexpected (pregnancy, birth, hospitalizations, unusual health

appliances, homes that seem more like hospitals with equipment & staff,

never-ending doctors appointments, and on and on...) with grace and dignity and

compassion. Not everyone could do that!

(mom to Evan 8 mos)

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

Yahoo! Mail

Bring photos to life! New PhotoMail makes sharing a breeze.

[Guest guest]

What bothers me is, sometimes they will say I want a girl, I don't want a boy(

and vise/ versa) and I would think I just want a baby that is healthy and that

is able to go home with me.

But people don't always realize what a tremendous gift that they have been

given, and say things out of ignorance without recognizing that CHARGE and

birth defects and other syndromes, can happen to any of us and we have no

control over these things. However we do have control of how we handle these

situations when they do happen, and I have to say most parents with a special

needs child handle it with tremendous grace and dignity--- if only the rest

could do the same.

Note: forwarded message attached.

n-mom to 3yrs. CHARGE ,Zach 10yrs. Jordan 7 yrs, Candace 2yrs and

wife toLester for 11 yrs.

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

Yahoo! Mail

Use Photomail to share photos without annoying attachments.

[Guest guest]

What bothers me is, sometimes they will say I want a girl, I don't want a boy(

and vise/ versa) and I would think I just want a baby that is healthy and that

is able to go home with me.

But people don't always realize what a tremendous gift that they have been

given, and say things out of ignorance without recognizing that CHARGE and

birth defects and other syndromes, can happen to any of us and we have no

control over these things. However we do have control of how we handle these

situations when they do happen, and I have to say most parents with a special

needs child handle it with tremendous grace and dignity--- if only the rest

could do the same.

Note: forwarded message attached.

n-mom to 3yrs. CHARGE ,Zach 10yrs. Jordan 7 yrs, Candace 2yrs and

wife toLester for 11 yrs.

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

Yahoo! Mail

Use Photomail to share photos without annoying attachments.

[Guest guest]

Amy,

I would imagine they cannot ALLOW themselves to acknowledge that it is

possible that it can happen to them.

It would be great if they would acknowledge what you have been

through, but I would bet that most don't have a clue on " what to say "

that helps, and does not inadvertently offend.

On Max's little cousin - this will be an ongoing sense of loss for

you. Every family get together, every birthday - he will forever be

doing what Max " should " have been doing.

Do not let it overshadow your celebration of what Max is doing. Max

is such a miracle. I know you will feel the miracle in all of his

milestones - make sure you are open with the family, so they can

celebrate them too. It will help them be comfortable celebrating each

child where they are at. Your twin needs to be comfortable sharing

her joys as do you, and you need to be comfortable sharing your

concerns and griefs as does she. they will be different, but no less

valid! Hugs,

Kim

....but I just feel they are so naive and I just wish they would

acknowledge what I endured. Does that make sense? It's as though

they don't think " this " could happen to them.

>

>

>

> Sefcik wrote:

> Thank you all for admiting those feelings it really does help to know that

> you are not alone and there are so many other people out there with similar

> stories. I was shopping for a birthday present for one of my other children

> shortly after was born and the person that was ringing up my purchase

> was far along in her pregnancy. Before I had 2 healthy children so

> when I was pregnant with him it didn't ever even cross my mind that anything

> could happen to the third child. So I feel like I was completely

> blindsighted and with that moment still so fresh.. For some reason I was in

> shock that someone could bring a child into the world with all of the risks

> that could happen to the child. I felt like I needed to tell her that there

> is a possibility that her child might be sick (like I was trying to prepare

> her or something). Today I understand how irrational those thoughts are but

> at the time they were so powerful!

> Thanks all for letting me share. Hope that this helps someone else.

> - Mom to (10) Dylan (3) and (7mo CHaRGE)

>

>

> >

> > .

> >

> > Yes I have had that reaction a few times. Sometimes I can't help but be

> > jealous when other children are sent home from the hospital. The ugly " why

> > can't that be us " thought passes through my head each time.

> >

> > HOWEVER, I try to console myself with the positives. Cedie has been a

> > blessing to us. I would not trade her, even with all of her issues, for

> > anything. This whole experience with her has brought my family together in

> > a

> > way that would not have been the same had she been " normal "

> >

> >

> >

> > Bernie,

> >

> > That OBGYN check up was rough for me too. The day I went there were 4 new

> > moms with their newborns there for their post partum check up. I was so

> > upset that I couldn't have Cedie there to show off! I cried 4 times during

> > the hour or so that I was there. It was awful

> >

> >

> >

> > _____

> >

> > From: CHARGE [mailto:CHARGE ] On Behalf Of

> > Bernadine Hill

> > Sent: Thursday, March 16, 2006 1:31 PM

> > To: CHARGE

> > Subject: Re: Effect of family birth after my daughter's dramatic

> > birth

> >

> >

> >

> > Yes! It hit me when I had to go back to by OBGYN for a check up (his

> > office

> > is in the same hospital I gave birth). I was leaving and witnessed a

> > family

> > going home with their new baby. Wow, did that hurt!!!!!!!!!! And, it

> > will

> > continue to happen again and again, but should be less painful.

> >

> > It's good that you had that cry! It's healthy! This is such a roller

> > coaster and will continue to have ups and downs for many, many years.

> >

> > Bernie Hill, Mom of Amber 9 and cHARGE 6

> >

> > wrote:

> > Not sure if other's have experienced this, but the other night, I got

> > a call that my cousin was in labor with her baby. She has asked me to

> > be the Godparent for her little girl, and I had all along planned to

> > be at the hospital for the birth (my family is large, and we all sit

> > vigil while someone is having a new family member!) At any rate, I

> > was on my way to the hospital (alone) and all of a sudden just started

> > crying such a deep emotional cry--I honestly was surprised at myself.

> > I think I must have been grieving the happy birth process that I

> > didn't have with Carmen, who was born so tiny, not breathing, and gray

> > in color. I don't think I've really ever cried out since her birth,

> > as I'm very action oriented and have been so focused on all of her

> > needs. The reaction I had to my cousin's birth process really hit me

> > hard--it was like I finally realized how sad I was that I didn't have

> > a joyous moment for my daughter when she arrived. I think it provided

> > some closure, really. Anyone else have this happen?

> >

> > B. mom to Zachary 4.5 years and Carmen 20 months (CHARGE)

> >

> >

> >

> >

> >

> >

> > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > http://www.imagestation.com/album/?id=2117043995

> >

> > Membership of this email support group 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 web site at http://www.chargesyndrome.org

> >

> > 8th International

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

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

> >

> >

> >

> >

[Guest guest]

Hi ,

When I gave birth to nearly 10 years ago, all seemed to be

going well, yet something about the whole pregnancy was just not

happy. He was born breech, but was sent home without us knowing that

he had CHARGE. I did not bond with him at all...he was simply a baby

I was taking care of. One day after a nap he stopped breathing and

we rushed him to the hospital. It was at that time that it finally

hit me that this was my baby and I was very emotional. That was the

day our bonding began, nearly 6 weeks after his birth. I felt like a

horrible person for not having bonded with him earlier on. I was

very angry in the beginning and jealous of others, but I went on to

have two more healthy children and I now console myself in the love

that gets from everyone, from the neighbors to his bus

driver to all of the staff and children in school. He has always

been a " celebrity " in school because of his friendly demeanor. When

I go to visit his school, people greet him in the hallway, sometimes

even when we are shopping on the weekend, people in the stores will

say hi because they work at the school or they are students in his

school. Children are drawn to him and always want to help or do

things for him.

Now and then I will see a child his age doing things that he isn't

able to do like run or ride a bike and I feel a moment of sadness,

but I just remember how incredibly special he is to everyone. To be

loved like that by all...I know it makes him feel wonderful. And you

know what? He doesn't feel like he's missing out on anything. He's

happy as a clam. He sees his siblings running around the

house...what does he do? He walks really fast and he's happy that

he's " running " too. He sees his siblings riding bikes..what does he

do? He sits on the bike and does a Fred Flinstone with his feet. And

he yells proudly " Mom! I riding!! " . And all of the kids cheer and he

just eats up the praise.

Gosh, sorry for rambling, but I just want you to know that you are

not alone!!

Hugs!

[Guest guest]

Hi ,

When I gave birth to nearly 10 years ago, all seemed to be

going well, yet something about the whole pregnancy was just not

happy. He was born breech, but was sent home without us knowing that

he had CHARGE. I did not bond with him at all...he was simply a baby

I was taking care of. One day after a nap he stopped breathing and

we rushed him to the hospital. It was at that time that it finally

hit me that this was my baby and I was very emotional. That was the

day our bonding began, nearly 6 weeks after his birth. I felt like a

horrible person for not having bonded with him earlier on. I was

very angry in the beginning and jealous of others, but I went on to

have two more healthy children and I now console myself in the love

that gets from everyone, from the neighbors to his bus

driver to all of the staff and children in school. He has always

been a " celebrity " in school because of his friendly demeanor. When

I go to visit his school, people greet him in the hallway, sometimes

even when we are shopping on the weekend, people in the stores will

say hi because they work at the school or they are students in his

school. Children are drawn to him and always want to help or do

things for him.

Now and then I will see a child his age doing things that he isn't

able to do like run or ride a bike and I feel a moment of sadness,

but I just remember how incredibly special he is to everyone. To be

loved like that by all...I know it makes him feel wonderful. And you

know what? He doesn't feel like he's missing out on anything. He's

happy as a clam. He sees his siblings running around the

house...what does he do? He walks really fast and he's happy that

he's " running " too. He sees his siblings riding bikes..what does he

do? He sits on the bike and does a Fred Flinstone with his feet. And

he yells proudly " Mom! I riding!! " . And all of the kids cheer and he

just eats up the praise.

Gosh, sorry for rambling, but I just want you to know that you are

not alone!!

Hugs!

[Guest guest]

Hi ,

When I gave birth to nearly 10 years ago, all seemed to be

going well, yet something about the whole pregnancy was just not

happy. He was born breech, but was sent home without us knowing that

he had CHARGE. I did not bond with him at all...he was simply a baby

I was taking care of. One day after a nap he stopped breathing and

we rushed him to the hospital. It was at that time that it finally

hit me that this was my baby and I was very emotional. That was the

day our bonding began, nearly 6 weeks after his birth. I felt like a

horrible person for not having bonded with him earlier on. I was

very angry in the beginning and jealous of others, but I went on to

have two more healthy children and I now console myself in the love

that gets from everyone, from the neighbors to his bus

driver to all of the staff and children in school. He has always

been a " celebrity " in school because of his friendly demeanor. When

I go to visit his school, people greet him in the hallway, sometimes

even when we are shopping on the weekend, people in the stores will

say hi because they work at the school or they are students in his

school. Children are drawn to him and always want to help or do

things for him.

Now and then I will see a child his age doing things that he isn't

able to do like run or ride a bike and I feel a moment of sadness,

but I just remember how incredibly special he is to everyone. To be

loved like that by all...I know it makes him feel wonderful. And you

know what? He doesn't feel like he's missing out on anything. He's

happy as a clam. He sees his siblings running around the

house...what does he do? He walks really fast and he's happy that

he's " running " too. He sees his siblings riding bikes..what does he

do? He sits on the bike and does a Fred Flinstone with his feet. And

he yells proudly " Mom! I riding!! " . And all of the kids cheer and he

just eats up the praise.

Gosh, sorry for rambling, but I just want you to know that you are

not alone!!

Hugs!