Part 2: Effect of family birth after my daughter's dramatic birth

March 17, 2006

Thanks everyone for sharing what you experienced in relation to other

babies being born by friends and family. It really has been helpful

for me to understand my feelings. I do feel compelled to share what

happened last night in relation to the birth of this same sweet little

baby, Mia.

I went to the hospital to take the new parents dinner. Mia, the new

baby has been put in the NICU for monitoring because her breathing is

a bit fast. So, everyone is very worried that something could be

wrong. Well, the grandmother of Mia, the dad's mother (not my family

member) got up and came to me as I'm holding this bag of food and

said, " You know why Kristy is so upset don't you? It's because of

Carmen. " and I felt such a sadness that Carmen was Kristy's first

thought--that perhaps her condition exaggerated the concern, and I

said, " Oh, well you know, Carmen's situation is very rare, and I'm

sure things will be fine " or something like that and then the

grandmother said, " Well, Kristy worried about it her entire

pregnancy. " Well, the tears started pouring down my face before I

knew what hit me. I just said I had to go and I left sobbing. I got

in the car and felt so sad that the thought surrounding Mia's possible

issue might be that she could be like my little Carmen--like Carmen is

such a dreaded thought to have. Intellectually I understand their

feelings, but as Carmen's mom: I LOVE my little girl, and see her as

an angel and a gift--a sweet strong soul with VALUE in the world, and

it just devastated me that she would be thought of in this way.

I would never tell my cousin that this happened, and I don't believe

this woman meant to hurt my feelings, but I think she was just

ignorant as to how her comments would feel to " Carmen's mom " . It felt

so personal. I came home and hugged my girl, and she initiated

practicing her walking again (so determined!) and I said, " Carmen, I

am lucky to have you and I am so blessed. Thank you for being in my

life, my little brave angel!!! " And I cried and cried some more!

Thanks to all of you--without this list I would feel so alone. You

understand that while we can be sad for our kids that they've had to

endure what they have, we LOVE them and would never want them out of

our worlds. Thank you, thank you!

B, proud and fortunate mom to Zachary 4.5 years and Carmen 20

months (CHARGE)

>

> Dear -

>

> I have had this happen to me several times since 's birth -

each time

> unexpected, each time more intense than the last. For me, I see it as

> unprocessed grief - grief that I didn't allow myself time for

because it is

> how I managed to deal with things that needed taking care of at the

time -

> or grief that I had accepted certain qualifications to my CHARGE

son's life,

> and then to have them surpassed beyond my wildest dreams. Or dreams that

> came true that I never knew I had not allowed myself to dare

dream... and

> the grief that goes with that.

>

> Bless and love your heart for all it does to make this time whole....to

> accept what is and to make good of it, no matter what.

>

> love and hugs-

>

> yuka

>

> Effect of family birth after my daughter's

dramatic birth

>

> > 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)

>

March 17, 2006

It's amazing the things that come out of peoples mouth. My husbands

cousin just had a miscarriage and she's going around telling people

" the reason for the miscarriage is cause there was something

genetically wrong with the fetus, so it's a good thing " . Meaning,

what happened with Alissa was probably what would have happened to

the baby she miscarried so it's a good thing for the miscarriage. I

think it's utterly discusting and rude. I've had another person

say " wow, you've had two boys and the only girl you have is has all

these problems.!! " Who cares!!! Alissa is my little princess.! Can

you believe how ignorant these people are ! I'm always trying to

find a good come back to ignorant comments ! Some times people need

to be put in there place. Any suggestions?

> >

> > Dear -

> >

> > I have had this happen to me several times since 's birth -

> each time

> > unexpected, each time more intense than the last. For me, I see

it as

> > unprocessed grief - grief that I didn't allow myself time for

> because it is

> > how I managed to deal with things that needed taking care of at

the

> time -

> > or grief that I had accepted certain qualifications to my CHARGE

> son's life,

> > and then to have them surpassed beyond my wildest dreams. Or

dreams that

> > came true that I never knew I had not allowed myself to dare

> dream... and

> > the grief that goes with that.

> >

> > Bless and love your heart for all it does to make this time

whole....to

> > accept what is and to make good of it, no matter what.

> >

> > love and hugs-

> >

> > yuka

> >

> > Effect of family birth after my daughter's

> dramatic birth

> >

> > > 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)

> >

>

March 17, 2006

,

You are an awesome mother and Carmen is blessed to have you as her mother.

Don't you just love the timing of her doing her special things just

when you needed it.

Kim

I felt such a sadness that Carmen was Kristy's first

> thought--that perhaps her condition exaggerated the concern, and I

> said, " Oh, well you know, Carmen's situation is very rare, and I'm

> sure things will be fine " or something like that and then the

> grandmother said, " Well, Kristy worried about it her entire

> pregnancy. "

March 17, 2006

,

You are an awesome mother and Carmen is blessed to have you as her mother.

Don't you just love the timing of her doing her special things just

when you needed it.

Kim

I felt such a sadness that Carmen was Kristy's first

> thought--that perhaps her condition exaggerated the concern, and I

> said, " Oh, well you know, Carmen's situation is very rare, and I'm

> sure things will be fine " or something like that and then the

> grandmother said, " Well, Kristy worried about it her entire

> pregnancy. "

March 18, 2006

Chantelle-

None of us can say we know how you feel. But the way you explain it, I can

understand. I mean, your logic makes sense. I can imagine myself in your

same place. Imagining isn't the same as really getting it-- but it's as

close as I can get. Believe me, if I could get inside your head or Aubrie's

and really know what it is to be you, I'd do it in a heartbeat. Hearing

your explanation is the closest I can get until Aubrie is old enough to tell

me her own thoughts.

I don't know how it would feel to be the person who is so " complicated " .

Gosh. That's just huge. I know everyone feels inadequate and different

sometimes. We parents also feel outside the norm -- different from all the

other parents. Again, I know it's not at all the same, it's simply all I

have to go on.

I don't know if it helps, but we do care. And we want to understand. And

we wish we could wave a magic wand and make CHARGE go away. Since we can't,

we're all here to share the struggles together. I hope that helps in some

small way.

Michele W

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

March 18, 2006

Chantelle-

None of us can say we know how you feel. But the way you explain it, I can

understand. I mean, your logic makes sense. I can imagine myself in your

same place. Imagining isn't the same as really getting it-- but it's as

close as I can get. Believe me, if I could get inside your head or Aubrie's

and really know what it is to be you, I'd do it in a heartbeat. Hearing

your explanation is the closest I can get until Aubrie is old enough to tell

me her own thoughts.

I don't know how it would feel to be the person who is so " complicated " .

Gosh. That's just huge. I know everyone feels inadequate and different

sometimes. We parents also feel outside the norm -- different from all the

other parents. Again, I know it's not at all the same, it's simply all I

have to go on.

I don't know if it helps, but we do care. And we want to understand. And

we wish we could wave a magic wand and make CHARGE go away. Since we can't,

we're all here to share the struggles together. I hope that helps in some

small way.

Michele W

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

March 18, 2006

Your absolutley right! I often just think to myself " these people

just don't get the true meaning of life,.... it's to love one

another....with or without dissabilities. It's the little things

that are important " . Its funny but ever since I had Alissa, my

relationships with friends and family has dramatically changed with

both family and friends. People are worried about not getting there

hair done or the garbage guy not picking up all there garbage.... who

cares !!! Enjoy each day with your families cause life is too

short!

>

> Sometimes people just don't " get it " . It's hard sometimes, but I

just try

> and remember that they just really have no way to really ever

understand

> what we've been through or how unbelievably amazing our children

are. I

> kind of feel sorry for them in a way - they may never know the love

or

> enlightenment we have experienced by having these wonderful kids in

our

> lives.

>

> Weir

> kawfolks@...

> http://ca.geocities.com/weirfamily@...

>

March 18, 2006