Re: Interesting Conversation

[Guest guest]

Yuka -

What a fascinating and powerful discussion. I look forward to those talks

with Aubrie some day. The things our kids face make them such amazing

people. Or is amazing part of CHARGE? As asked me as we approached

the CHARGE conference hotel -- why are all CHARGE families so nice? Does

CHARGE only happen to nice families?

Michele W

Aubrie's mom 6 yrs and 13 yrs

[Guest guest]

Vicky-

All those feelings you are having are so " normal " . Please know you are not

alone. At 17 months, Aubrie was much like . I remember the first walk

we took (she was less than a year old) in the stroller to some kind of

festival at the hospital. She vomited and had a huge attack -- severe GER

then. The EMTs were alarmed and wondering how they could help. I knew how

to handle it, she was fine, but I was so frustrated. We'd tried something

so simple and it had failed miserably.

But now she is so much better! So wonderful! For me, it was awful not

knowing what to dare to dream for or to expect. Then I " met " (thru

her mom online)and Kay and Patty at the conference. When I could see

possibilities in real life, then I could dare to dream. Now there is

nothing I don't dream for her.

Yesterday, we saw Polar Express together. It was so special. She can't be

quiet in the theatre, but her expressions and responses to the movie were

precious.

Michele W

Aubrie's mom 6 yrs

[Guest guest]

Vicky, Michele, and Yuka,

Again I am touched by eloquent posts. People would ask me before I

got preg with Sara if we were going to try for a girl (we have two

young boys)- and my answer was emphatically NO- I was just catching

my breath, and getting my groove back so to speak. When I found out

I was pregnant I was worried about losing myself again- but I

prepared the best I could, didnt gain much weight this time and

convinced myself that the third time around would be a breeze! In

the delivery room wearing pearls & make up- (dont laugh, I was

induced- and celebrating the fact we were finally having a girl) my

fragile, petty world came crashing down. All these ridiculous things

I worried so much about have no meaning now. So on one hand I see

clearer what really matters and thats a blessing. But its also very

confusing because I feel like I am trying to recreate who I am. I

accept that may be a long process- maybe even neverending? I'm not

very graceful yet with all these overwhelming feelings- but talking

about them helps me forge a better path. I have already suprised

myself with the things I have accepted, learned, and celebrated. In

the past few weeks Sara has begun to engage US in play- flirting,

and even attempting to roll around to get closer to her brothers on

the floor. I probably dont need to express here what joy that

brings to us- because you already get that ... I never would have if

Sara had been born any other way! I dont really know yet what kind

of mom I will be to Sara. Right now I'm just going through the

motions, doing my best to stay on top of things as they arise- but I

sure dont take a moment of joy for granted anymore- it is too

precious. Sara has been grinning at me when I raise my voice to her

rowdy brothers- maybe because she is hearing me better that way- but

I am quickly reminded to count my blessings- three specifically: two

loud wrestling boys and one scrumptious baby girl!

Mark mom to Sara 8 months, Grant 4, 3

In CHARGE , momonamission@k... wrote:

> Vicky-

> All those feelings you are having are so " normal " . Please know

you are not

> alone. At 17 months, Aubrie was much like . I remember the

first walk

> we took (she was less than a year old) in the stroller to some

kind of

> festival at the hospital. She vomited and had a huge attack --

severe GER

> then. The EMTs were alarmed and wondering how they could help. I

knew how

> to handle it, she was fine, but I was so frustrated. We'd tried

something

> so simple and it had failed miserably.

>

> But now she is so much better! So wonderful! For me, it was

awful not

> knowing what to dare to dream for or to expect. Then I " met "

(thru

> her mom online)and Kay and Patty at the conference. When I

could see

> possibilities in real life, then I could dare to dream. Now there

is

> nothing I don't dream for her.

>

> Yesterday, we saw Polar Express together. It was so special. She

can't be

> quiet in the theatre, but her expressions and responses to the

movie were

> precious.

>

> Michele W

> Aubrie's mom 6 yrs

[Guest guest]

-

Absolutely!! We are the only people I know who rejoiced together when our

kids began sibling rivalry!! We'd never expected Aubrie to speak so the

first time she said, " He's boddering me! " , we just smiled to each other!

It's so luscious!

That part about recreating yourself-- I felt that too. I used to be

involved in every committee and organization. I was a teacher. I had many

identities. Suddenly, I was just Aubrie's struggling mom. And I couldn't

imagine every having my " self " back. At one point, Aubrie was 3, I think,

and in school half days. Our mayor asked me to serve on the park board. I

was so thrilled that someone thought I was competent and valuable. But I

could not keep up with monthly meetings! And I hated politics. So I had to

resign-- and resign myself to the fact that I just wasn't able to make any

commitments yet.

Still-- I am struggling to accept that I can't do the things that other

people do. Aubrie takes up a huge chunk of my time and energy. That has to

come from somewhere. So it can come from housecleaning time, social time,

committee time, something. I still say " yes " to things and have to back out

when I realize that I just can't do it even though I'd like to.

As it turned out, I started my own business painting glassware items and

designing beaded jewelry. Before Aubrie, I dreamed of exploring my artistic

side maybe in my golden years. But it's something that satisfies several

needs in me while allowing me to adjust my schedule and workload to meet the

needs of my family. So reevaluating who I was turned out to be a good thing

that I never would have taken the risk for otherwise.

If you remain open to the possibilities, this new path can take you great

places. It's very hard to be accepting and calm through it all because it's

huge change and scary parenting sometimes. But I can tell that you have the

inner " whatever " to do it.

Michele W

Aubrie's mom 6 yrs and 13 yrs

[Guest guest]

,

Youre still teaching! and maybe this is your " committee " - thanks

with love, Mark

-- In CHARGE , momonamission@k... wrote:

> -

> Absolutely!! We are the only people I know who rejoiced together

when our

> kids began sibling rivalry!! We'd never expected Aubrie to speak

so the

> first time she said, " He's boddering me! " , we just smiled to each

other!

> It's so luscious!

>

> That part about recreating yourself-- I felt that too. I used to

be

> involved in every committee and organization. I was a teacher. I

had many

> identities. Suddenly, I was just Aubrie's struggling mom. And I

couldn't

> imagine every having my " self " back. At one point, Aubrie was 3,

I think,

> and in school half days. Our mayor asked me to serve on the park

board. I

> was so thrilled that someone thought I was competent and

valuable. But I

> could not keep up with monthly meetings! And I hated politics.

So I had to

> resign-- and resign myself to the fact that I just wasn't able to

make any

> commitments yet.

>

> Still-- I am struggling to accept that I can't do the things that

other

> people do. Aubrie takes up a huge chunk of my time and energy.

That has to

> come from somewhere. So it can come from housecleaning time,

social time,

> committee time, something. I still say " yes " to things and have

to back out

> when I realize that I just can't do it even though I'd like to.

>

> As it turned out, I started my own business painting glassware

items and

> designing beaded jewelry. Before Aubrie, I dreamed of exploring

my artistic

> side maybe in my golden years. But it's something that satisfies

several

> needs in me while allowing me to adjust my schedule and workload

to meet the

> needs of my family. So reevaluating who I was turned out to be a

good thing

> that I never would have taken the risk for otherwise.

>

> If you remain open to the possibilities, this new path can take

you great

> places. It's very hard to be accepting and calm through it all

because it's

> huge change and scary parenting sometimes. But I can tell that

you have the

> inner " whatever " to do it.

>

> Michele W

> Aubrie's mom 6 yrs and 13 yrs

[Guest guest]

you have a very grown up young man!!

maria

Interesting Conversation

>

> and I were at Children's Hospital waiting to see the

Endocrinologist. It was a 2:45 appointment, but she is always so busy - we

know we will be waiting two or three hours. Add to that the 50 miles of

travel each way, and then the lab work and x-rays afterwards, and it is

usually a six or seven hour day for us. I always look forward to this long

uninterrupted time together in non-distracting environments to hear what my

precious 15 year old Charger is thinking.

>

> Here is what I learned yesterday:

>

> He is hoping for science to develop the ability to correct gene mutations

in utero. I did point out to him the difficulty that most people don't even

know they are pregnant when most of the embryo has taken its form. He

countered with in his case he would know his children might be chargers, so

they could be on the alert from the beginning.

>

> That brought us to the discussion of him fathering children. He knows it

might not be biologically possible - though he hopes science will help with

that to if need be. I said, when that time comes fathering ones own

children is a strong drive in every man, however, his decision is unique and

highly personal. We talked about a deaf family we know (otherwise medically

unremarkable, and very high functioning in society - socially, academically

and economically). The parents are both deaf. They knew any children they

have would be deaf. They have three children. Sometimes, strangers asking

the family these questions will blurt out " How could you have these children

knowing they would be deaf? " They have been accused of being selfish. Of

taking (financial) advantage of the system. It has been suggested that

since they willingly and knowingly brought these children into the world,

they should be financially responsible to provide the school aides and other

services. To

> this family being deaf is normal. I saw clearly yesterday that for

having Charge is normal. If he is able to, he would like very much to

exercise the option of fathering his own children.

>

> We talked about prenatal testing and abortion and a previous thread where

expressed eloquently that he would not have wished to be terminated if

identified prenatally. shared the same sentiment with gratitude.

>

> We talked about children he has known with Down's Syndrome and the

prenatal tests available for that and how parents who choose to terminate

that pregnancy do so with the best of intentions and are in no way condemned

or ostracized.

>

> I talked about how before I had him I felt like prenatal testing was like

running a " rough draft " - and it might give us a chance to correct and redo.

We talked about how some people cannot bear the thought of bringing in

potential suffering. We talked about how some unremarkable pregnancies are

terminated. We talked about the choice to bear.

>

> We talked about how after was born we had prenatal testing in our

subsequent two pregnancies - but it was to be informed and prepared. For

example, if our AlphaFetalProtien came back abnormal, we would not have put

the pregnancy at risk with an amniocentesis, because we would not have

elected to terminate the pregnancy if the child had Down's Syndrome.

>

> All very very thought provoking.

>

> I was moved by the depth of his understanding and maturity, and made more

vulnerable to realize better all the challenges he still faces unique to all

his peer group.......

>

> Yuka

>

>

[Guest guest]

-

Thanks -- that makes me feel a bit better, actually!

Michele W

[Guest guest]

kim -

Same here -- my life path looks like a Family Circus cartoon. It's been

interesting. It's rewarding. And I look foward to what's ahead -- even

though I don't even try to imagine what it is cuz nothing so far has gone as

planned. I'm not sure my husband totally embraces all of the new me, but

he's hanging in there. I think he doesn't always know what to do with me!

But I know he loves me and he's stuck with me so far so I expect him to

stick with whatever comes as well. I'm lucky to have a stable rock to hold

our family down.

You're an amazing lady -- I'm thankful to know you.

Michele W

[Guest guest]

Michele,

Its the truth!

(Sorry, Ive been giving you an extra " L " in all my posts!)

Mark

> -

> Thanks -- that makes me feel a bit better, actually!

>

> Michele W