Re: Holiday Ups and Downs

[Guest guest]

, first of all, I understand very much how you feel. My daughter is 18 and

I go through those type of emotions from time to time. I think it is related to

my grief of Caitlin not being able to share in the same world I live in. I hope

you can remember that it is OK to be down. There is no need to kick yourself my

dear.... you have plenty of company. If someone tells you they never get down

about things like this, they are in denial.

As far as being lost when is gone, that is normal as well. At your

daughter's age, so much physical, emotional and mental being goes to her (and

possibly your spouse) leaving you without much of a reserve. Keep taking time

for yourself and you will figure out how to not be so lost and how to keep a

reserve of energy for yourself. One thing I had to learn is not plan work while

my kids were gone and to make this " Jillana " time. Plan something you know won't

be a trigger for the grief involved for you with right now. I plan things

like sitting at and Noble with a great cup of coffee and looking up books

I have wanted to look at. Poetry is a big one for me. Love the stuff and there

is never enough silence in the house to actually deliberate over the prose. What

did you like to do B.C. (Before Children)? Thinking back to those times made it

easier for me to think of things to nurture myself. Do you like to take photos?

Doesn't matter if you are good at it or

not but make sure you take " " time and try to not make it all about being

a Mom. You will be so much healthier and sane for it.

As far as the Holiday experience, it sounds like you try to make sure it matters

to her. I include her in ornament shopping and in the smells of the Holidays. I

walked about a Christmas tree lot letting Caitlin feel and experience the

trees... I think Caitlin can't smell but include those. I have learned in my

many years of life with Caitlin that it isn't about the traditions as much as

the experience. Each holiday is a 'once in a lifetime' experience and so we

chose to focus on that.I take my girl to see signing Santa every year. People

think it is age inappropriate but I sat on Santa's lap too and thought it was a

hoot and a half. I even purchased a picture to have as a memento of my

playfulness. If I can't give her everything I had, I will do my best to give her

everything I can to make her life as meaningful as my family memories to me.

I am thankful as well for all we have in our daughter. I have learned much from

being there for her and helping her along the path that is her life that in

while walking with her a step and a half behind, I learned more about the path

for mine.

I applaud you for your honesty and candor. It makes me feel right at home here.

Jillana

Cleverly Disguised As A Responsible Adult.

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

Check out the all-new Yahoo! Mail beta - Fire up a more powerful email and get

things done faster.

[Guest guest]

yeah i no how hard it must b for people with deaf blind children like katie

but there r people worse than her shes come so far we all have it must b

hard for people whos kids didnt make it yeah i no how it must b but one day

she may learn how wonderful it really is sometimes jsut the stories r great

for people and songs i love the songs lol

>

> Hi everyone,

>

> Can I cry on your shoulders for a minute? The holiday season is starting,

> and I seem to have such a rough time from Thanksgiving to 's birthday

> (mid-January). It's getting better year to year--and I try so hard to stay

> positive--but then, darn it, those " blues " start to creep back in again some

> days and I could just kick myself!

>

> is at my parents this weekend, which I'm sure is part of the reason

> I'm down. As much as I feel so grateful that my parents as so good with

> and gladly offer to watch her for us occasionally, I feel so lost when

> she is gone. I know we need a break once in a while, and I always make plans

> for all these things I'll do while she's gone, but then I end up just lost

> when she's away.

>

> I did manage to do some Christmas shopping, but then I found myself

> getting down when I saw all the toys in the stores--things that has no

> interest in, or doesn't understand. I did find her some books I think she'll

> like, and found some neat things at an educational store that I know will

> interest her. But it's hard not to look at all the dolls, games, etc. that

> fill the stores. I try to just avoid the whole area if I can.

>

> I put up the Christmas tree today, but again found myself down. I kept

> thinking about what Christmas used to be like for me when I was a child--how

> I loved the tree when it was lit up, leaving milk and cookies for Santa,

> getting up early Christmas morning to see what Santa left...and how

> doesn't really have an interest in or understand or experience any of this.

> I know all this is superficial and isn't the " real " meaning of Christmas,

> but it's still sometimes painful to miss out on all this with your child.

>

> Don't get me wrong--I am SO thankful for everything we've got with ,

> and I remind myself of this every time I start to feel down like this. She's

> such a fun and beautiful child, and we are so lucky that she's healthy,

> happy, and making great progress. We have learned to appreciate what we have

> and not mourn for the things we don't have. But occasionally, like this

> weekend, those " normal " things sneak through and get the best of me.

>

> Sorry to ramble--I just needed to let all this out to people I knew would

> understand. Thanks for listening.

>

> , mom to (4)

> http://kauffmanlak.blogspot.com/

>

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

> Check out the all-new Yahoo! Mail beta - Fire up a more powerful email and

> get things done faster.

>

>

[Guest guest]

,

Our is now 22, and your post brought back endless memories of

past holidays. In her early and even later years, she was always sick for

Christmas and had little or no interest in presents or festivities. I don't

know when that changed --- but it was just a few years ago. We've always

decorated the tree as a family, and was certainly always with us, but

now she's TOTALLY with us. She sips her dinner ginger ale in a wine

glass. She eagerly opens presents now, though she doesn't always

warm up to them until months have gone by.

I, too, still mourn for a " normal " holiday, but please trust me that things

get better and better. Hopefully, it won't take your as long as it did

ours. There was never an interest in Santa Claus, for example, for the

reading of The Night Before Christmas remains a tradition for us, and

now curls up between and me for it.

So, I know where you are and suspect that you have much to anticipate

in the future - and it will probably hit when least expected!

Hugs - Martha

Perhaps you shouldn't give up on dolls. has been feeding hers for

ages now and tells me when they're crying. It just took awhile. The dolls

had a lonely time on her chest of drawers for many years.

[Guest guest]

Thank you, for, describing how I feel too. And thank you,

Jillana, for letting me know I am not the only one hanging out at

and Noble for that reason. :-)

From an adult who's still perfecting the clever disguise,

Janay

Rasha's Mom

>

> , first of all, I understand very much how you feel. My

daughter is 18 and I go through those type of emotions from time to

time. I think it is related to my grief of Caitlin not being able to

share in the same world I live in. I hope you can remember that it

is OK to be down. There is no need to kick yourself my dear.... you

have plenty of company. If someone tells you they never get down

about things like this, they are in denial.

> As far as being lost when is gone, that is normal as well.

At your daughter's age, so much physical, emotional and mental being

goes to her (and possibly your spouse) leaving you without much of a

reserve. Keep taking time for yourself and you will figure out how

to not be so lost and how to keep a reserve of energy for yourself.

One thing I had to learn is not plan work while my kids were gone

and to make this " Jillana " time. Plan something you know won't be a

trigger for the grief involved for you with right now. I plan

things like sitting at and Noble with a great cup of coffee

and looking up books I have wanted to look at. Poetry is a big one

for me. Love the stuff and there is never enough silence in the

house to actually deliberate over the prose. What did you like to do

B.C. (Before Children)? Thinking back to those times made it easier

for me to think of things to nurture myself. Do you like to take

photos? Doesn't matter if you are good at it or

> not but make sure you take " " time and try to not make it

all about being a Mom. You will be so much healthier and sane for it.

> As far as the Holiday experience, it sounds like you try to make

sure it matters to her. I include her in ornament shopping and in

the smells of the Holidays. I walked about a Christmas tree lot

letting Caitlin feel and experience the trees... I think Caitlin

can't smell but include those. I have learned in my many years of

life with Caitlin that it isn't about the traditions as much as the

experience. Each holiday is a 'once in a lifetime' experience and so

we chose to focus on that.I take my girl to see signing Santa every

year. People think it is age inappropriate but I sat on Santa's lap

too and thought it was a hoot and a half. I even purchased a picture

to have as a memento of my playfulness. If I can't give her

everything I had, I will do my best to give her everything I can to

make her life as meaningful as my family memories to me.

> I am thankful as well for all we have in our daughter. I have

learned much from being there for her and helping her along the path

that is her life that in while walking with her a step and a half

behind, I learned more about the path for mine.

> I applaud you for your honesty and candor. It makes me feel right

at home here.

>

> Jillana

>

>

> Cleverly Disguised As A Responsible Adult.

>

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

> Check out the all-new Yahoo! Mail beta - Fire up a more powerful

email and get things done faster.

>

>

[Guest guest]

Thanks, Jillana, Ellen, and Martha, for your replies. I love your stories and

can just picture Caitlin touching the Christmas trees and her (and mom!) sitting

on Santa's lap, and Ellen enjoying the Christmas songs, and L. opening

gifts and curling up between sister and mom for Twas the Night Before Christmas.

Those visions bring tears to my eyes and a smile to my face. They give me hope.

I hope all of you have a wonderful holiday season! Thanks again for lifting

me up when I needed it.

, mom to (4)

http://kauffmanlak.blogspot.com/

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

Everyone is raving about the all-new Yahoo! Mail beta.

[Guest guest]

,

I think we have all been there or are there. I have such a hard time

trying to figure out what will be good for Eva and what is just a

waste of time. I also have a friend who has a son 2 weeks younger

then Eva doing things she is not even close to doing!!! It breaks my

heart.

I cry just looking at her someday, mostly because I am so happy to

have her but I wish she could do so much more. Or we got for

Christmas photos and the photographer looks at you like " you have a

19 month old who can't sit what is wrong with you?? "

I use to be a photographer and I would never do that I worked with

them and did the best we could together.

I make myself feel better by trying to figure out what I can do for

these kids when I open my photo studio (which by the way I will be

doing in the next few years my dad is going to work with me).

We are all here for you and each other hang in there you will get

that moment where you will have so much to pick out for her you

won't know what to do.

Cry on our shoulders whenever you want!!!!

Hugs,

Crystal mom to (10), (3), and Eva (19 month old CHARGEr)

wife to Dan in Illinois

>

> Hi everyone,

>

> Can I cry on your shoulders for a minute? The holiday season is

starting, and I seem to have such a rough time from Thanksgiving to

's birthday (mid-January). It's getting better year to year--

and I try so hard to stay positive--but then, darn it, those " blues "

start to creep back in again some days and I could just kick myself!

>

> is at my parents this weekend, which I'm sure is part of

the reason I'm down. As much as I feel so grateful that my parents

as so good with and gladly offer to watch her for us

occasionally, I feel so lost when she is gone. I know we need a

break once in a while, and I always make plans for all these things

I'll do while she's gone, but then I end up just lost when she's

away.

>

> I did manage to do some Christmas shopping, but then I found

myself getting down when I saw all the toys in the stores--things

that has no interest in, or doesn't understand. I did find

her some books I think she'll like, and found some neat things at an

educational store that I know will interest her. But it's hard not

to look at all the dolls, games, etc. that fill the stores. I try

to just avoid the whole area if I can.

>

> I put up the Christmas tree today, but again found myself down.

I kept thinking about what Christmas used to be like for me when I

was a child--how I loved the tree when it was lit up, leaving milk

and cookies for Santa, getting up early Christmas morning to see

what Santa left...and how doesn't really have an interest in

or understand or experience any of this. I know all this is

superficial and isn't the " real " meaning of Christmas, but it's

still sometimes painful to miss out on all this with your child.

>

> Don't get me wrong--I am SO thankful for everything we've got

with , and I remind myself of this every time I start to feel

down like this. She's such a fun and beautiful child, and we are so

lucky that she's healthy, happy, and making great progress. We have

learned to appreciate what we have and not mourn for the things we

don't have. But occasionally, like this weekend, those " normal "

things sneak through and get the best of me.

>

> Sorry to ramble--I just needed to let all this out to people I

knew would understand. Thanks for listening.

>

>

> , mom to (4)

> http://kauffmanlak.blogspot.com/

>

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

> Check out the all-new Yahoo! Mail beta - Fire up a more powerful

email and get things done faster.

>

>

[Guest guest]

I'm glad I'm not alone in feeling this way, Janay. Not that I'd

wish this feeling on anyone! But I'm glad to have the company and

understanding of people who are/have been there.

Let me know if you figure out the secret to perfecting that

disguise! Most days I'm pretty good at it, but once in a while my

mask slips. :-)

> >

> > , first of all, I understand very much how you feel. My

> daughter is 18 and I go through those type of emotions from time

to

> time. I think it is related to my grief of Caitlin not being able

to

> share in the same world I live in. I hope you can remember that it

> is OK to be down. There is no need to kick yourself my dear....

you

> have plenty of company. If someone tells you they never get down

> about things like this, they are in denial.

> > As far as being lost when is gone, that is normal as well.

> At your daughter's age, so much physical, emotional and mental

being

> goes to her (and possibly your spouse) leaving you without much of

a

> reserve. Keep taking time for yourself and you will figure out how

> to not be so lost and how to keep a reserve of energy for

yourself.

> One thing I had to learn is not plan work while my kids were gone

> and to make this " Jillana " time. Plan something you know won't be

a

> trigger for the grief involved for you with right now. I

plan

> things like sitting at and Noble with a great cup of coffee

> and looking up books I have wanted to look at. Poetry is a big one

> for me. Love the stuff and there is never enough silence in the

> house to actually deliberate over the prose. What did you like to

do

> B.C. (Before Children)? Thinking back to those times made it

easier

> for me to think of things to nurture myself. Do you like to take

> photos? Doesn't matter if you are good at it or

> > not but make sure you take " " time and try to not make it

> all about being a Mom. You will be so much healthier and sane for

it.

> > As far as the Holiday experience, it sounds like you try to make

> sure it matters to her. I include her in ornament shopping and in

> the smells of the Holidays. I walked about a Christmas tree lot

> letting Caitlin feel and experience the trees... I think Caitlin

> can't smell but include those. I have learned in my many years of

> life with Caitlin that it isn't about the traditions as much as

the

> experience. Each holiday is a 'once in a lifetime' experience and

so

> we chose to focus on that.I take my girl to see signing Santa

every

> year. People think it is age inappropriate but I sat on Santa's

lap

> too and thought it was a hoot and a half. I even purchased a

picture

> to have as a memento of my playfulness. If I can't give her

> everything I had, I will do my best to give her everything I can

to

> make her life as meaningful as my family memories to me.

> > I am thankful as well for all we have in our daughter. I have

> learned much from being there for her and helping her along the

path

> that is her life that in while walking with her a step and a half

> behind, I learned more about the path for mine.

> > I applaud you for your honesty and candor. It makes me feel

right

> at home here.

> >

> > Jillana

> >

> >

> > Cleverly Disguised As A Responsible Adult.

> >

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

> > Check out the all-new Yahoo! Mail beta - Fire up a more powerful

> email and get things done faster.

> >

> >

[Guest guest]

I'm glad I'm not alone in feeling this way, Janay. Not that I'd

wish this feeling on anyone! But I'm glad to have the company and

understanding of people who are/have been there.

Let me know if you figure out the secret to perfecting that

disguise! Most days I'm pretty good at it, but once in a while my

mask slips. :-)

> >

> > , first of all, I understand very much how you feel. My

> daughter is 18 and I go through those type of emotions from time

to

> time. I think it is related to my grief of Caitlin not being able

to

> share in the same world I live in. I hope you can remember that it

> is OK to be down. There is no need to kick yourself my dear....

you

> have plenty of company. If someone tells you they never get down

> about things like this, they are in denial.

> > As far as being lost when is gone, that is normal as well.

> At your daughter's age, so much physical, emotional and mental

being

> goes to her (and possibly your spouse) leaving you without much of

a

> reserve. Keep taking time for yourself and you will figure out how

> to not be so lost and how to keep a reserve of energy for

yourself.

> One thing I had to learn is not plan work while my kids were gone

> and to make this " Jillana " time. Plan something you know won't be

a

> trigger for the grief involved for you with right now. I

plan

> things like sitting at and Noble with a great cup of coffee

> and looking up books I have wanted to look at. Poetry is a big one

> for me. Love the stuff and there is never enough silence in the

> house to actually deliberate over the prose. What did you like to

do

> B.C. (Before Children)? Thinking back to those times made it

easier

> for me to think of things to nurture myself. Do you like to take

> photos? Doesn't matter if you are good at it or

> > not but make sure you take " " time and try to not make it

> all about being a Mom. You will be so much healthier and sane for

it.

> > As far as the Holiday experience, it sounds like you try to make

> sure it matters to her. I include her in ornament shopping and in

> the smells of the Holidays. I walked about a Christmas tree lot

> letting Caitlin feel and experience the trees... I think Caitlin

> can't smell but include those. I have learned in my many years of

> life with Caitlin that it isn't about the traditions as much as

the

> experience. Each holiday is a 'once in a lifetime' experience and

so

> we chose to focus on that.I take my girl to see signing Santa

every

> year. People think it is age inappropriate but I sat on Santa's

lap

> too and thought it was a hoot and a half. I even purchased a

picture

> to have as a memento of my playfulness. If I can't give her

> everything I had, I will do my best to give her everything I can

to

> make her life as meaningful as my family memories to me.

> > I am thankful as well for all we have in our daughter. I have

> learned much from being there for her and helping her along the

path

> that is her life that in while walking with her a step and a half

> behind, I learned more about the path for mine.

> > I applaud you for your honesty and candor. It makes me feel

right

> at home here.

> >

> > Jillana

> >

> >

> > Cleverly Disguised As A Responsible Adult.

> >

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

> > Check out the all-new Yahoo! Mail beta - Fire up a more powerful

> email and get things done faster.

> >

> >

[Guest guest]

Thanks, Crystal. I know what you mean about the Christmas

photographs, too. We've given up on taking those professionally

because we can't find anyone who has the patience and understanding

to know how to work well with . We just take them ourselves--

which is fine. I applaud you for planning to open a photography

studio to serve people with special needs. I had actually tossed

around that idea myself for people here in Cincinnati--but I know

nothing about photography! :-)

Seeing the pictures you've taken of Eva, , and , your

studio will be a great success!

> >

> > Hi everyone,

> >

> > Can I cry on your shoulders for a minute? The holiday season

is

> starting, and I seem to have such a rough time from Thanksgiving

to

> 's birthday (mid-January). It's getting better year to year--

> and I try so hard to stay positive--but then, darn it,

those " blues "

> start to creep back in again some days and I could just kick

myself!

> >

> > is at my parents this weekend, which I'm sure is part of

> the reason I'm down. As much as I feel so grateful that my

parents

> as so good with and gladly offer to watch her for us

> occasionally, I feel so lost when she is gone. I know we need a

> break once in a while, and I always make plans for all these

things

> I'll do while she's gone, but then I end up just lost when she's

> away.

> >

> > I did manage to do some Christmas shopping, but then I found

> myself getting down when I saw all the toys in the stores--things

> that has no interest in, or doesn't understand. I did find

> her some books I think she'll like, and found some neat things at

an

> educational store that I know will interest her. But it's hard

not

> to look at all the dolls, games, etc. that fill the stores. I try

> to just avoid the whole area if I can.

> >

> > I put up the Christmas tree today, but again found myself

down.

> I kept thinking about what Christmas used to be like for me when I

> was a child--how I loved the tree when it was lit up, leaving milk

> and cookies for Santa, getting up early Christmas morning to see

> what Santa left...and how doesn't really have an interest in

> or understand or experience any of this. I know all this is

> superficial and isn't the " real " meaning of Christmas, but it's

> still sometimes painful to miss out on all this with your child.

> >

> > Don't get me wrong--I am SO thankful for everything we've got

> with , and I remind myself of this every time I start to feel

> down like this. She's such a fun and beautiful child, and we are

so

> lucky that she's healthy, happy, and making great progress. We

have

> learned to appreciate what we have and not mourn for the things we

> don't have. But occasionally, like this weekend, those " normal "

> things sneak through and get the best of me.

> >

> > Sorry to ramble--I just needed to let all this out to people I

> knew would understand. Thanks for listening.

> >

> >

> > , mom to (4)

> > http://kauffmanlak.blogspot.com/

> >

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

> > Check out the all-new Yahoo! Mail beta - Fire up a more powerful

> email and get things done faster.

> >

> >

[Guest guest]

,

SOmetimes those moments just sneak in amongst all the wonderful other things

our kids do. They're inevitable, and fortunately for us, don't last

forever. You just find new/other/different things that bring her joy and

embrace her uniqueness as much as possible.

Hugs,

www.chargesyndrome.info

>

> I'm glad I'm not alone in feeling this way, Janay. Not that I'd

> wish this feeling on anyone! But I'm glad to have the company and

> understanding of people who are/have been there.

>

> Let me know if you figure out the secret to perfecting that

> disguise! Most days I'm pretty good at it, but once in a while my

> mask slips. :-)

>

>

> > >

> > > , first of all, I understand very much how you feel. My

> > daughter is 18 and I go through those type of emotions from time

> to

> > time. I think it is related to my grief of Caitlin not being able

> to

> > share in the same world I live in. I hope you can remember that it

> > is OK to be down. There is no need to kick yourself my dear....

> you

> > have plenty of company. If someone tells you they never get down

> > about things like this, they are in denial.

> > > As far as being lost when is gone, that is normal as well.

> > At your daughter's age, so much physical, emotional and mental

> being

> > goes to her (and possibly your spouse) leaving you without much of

> a

> > reserve. Keep taking time for yourself and you will figure out how

> > to not be so lost and how to keep a reserve of energy for

> yourself.

> > One thing I had to learn is not plan work while my kids were gone

> > and to make this " Jillana " time. Plan something you know won't be

> a

> > trigger for the grief involved for you with right now. I

> plan

> > things like sitting at and Noble with a great cup of coffee

> > and looking up books I have wanted to look at. Poetry is a big one

> > for me. Love the stuff and there is never enough silence in the

> > house to actually deliberate over the prose. What did you like to

> do

> > B.C. (Before Children)? Thinking back to those times made it

> easier

> > for me to think of things to nurture myself. Do you like to take

> > photos? Doesn't matter if you are good at it or

> > > not but make sure you take " " time and try to not make it

> > all about being a Mom. You will be so much healthier and sane for

> it.

> > > As far as the Holiday experience, it sounds like you try to make

> > sure it matters to her. I include her in ornament shopping and in

> > the smells of the Holidays. I walked about a Christmas tree lot

> > letting Caitlin feel and experience the trees... I think Caitlin

> > can't smell but include those. I have learned in my many years of

> > life with Caitlin that it isn't about the traditions as much as

> the

> > experience. Each holiday is a 'once in a lifetime' experience and

> so

> > we chose to focus on that.I take my girl to see signing Santa

> every

> > year. People think it is age inappropriate but I sat on Santa's

> lap

> > too and thought it was a hoot and a half. I even purchased a

> picture

> > to have as a memento of my playfulness. If I can't give her

> > everything I had, I will do my best to give her everything I can

> to

> > make her life as meaningful as my family memories to me.

> > > I am thankful as well for all we have in our daughter. I have

> > learned much from being there for her and helping her along the

> path

> > that is her life that in while walking with her a step and a half

> > behind, I learned more about the path for mine.

> > > I applaud you for your honesty and candor. It makes me feel

> right

> > at home here.

> > >

> > > Jillana

> > >

> > >

> > > Cleverly Disguised As A Responsible Adult.

> > >

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

> > > Check out the all-new Yahoo! Mail beta - Fire up a more powerful

> > email and get things done faster.

> > >

> > >

[Guest guest]

Like others have said, you are not alone. I feel much the same and

Wyatt's only 2. This will be his 3rd Christmas and we can only hope

that we'll all be home for it. It'll be our first together as a

family and our youngest sons first Christmas. Wyatt and I are

getting ready to head back up to MN for a dilation of his esophagus

and some ENT work. We leave in just about a week and I'm crossing

my fingers we only need to be there for 2 weeks. That'll get us

home just in time for Christmas. We may even have a tree this

year! We haven't had one in 4 years.

Hang in there. You aren't alone.

Mom to Wyatt 2 (CHARGE) and Toby 9 months

>

> ,

> Our is now 22, and your post brought back endless

memories of

> past holidays. In her early and even later years, she was always

sick for

> Christmas and had little or no interest in presents or

festivities. I don't

> know when that changed --- but it was just a few years ago. We've

always

> decorated the tree as a family, and was certainly always

with us, but

> now she's TOTALLY with us. She sips her dinner ginger ale in a

wine

> glass. She eagerly opens presents now, though she doesn't always

> warm up to them until months have gone by.

> I, too, still mourn for a " normal " holiday, but please trust me

that things

> get better and better. Hopefully, it won't take your as

long as it did

> ours. There was never an interest in Santa Claus, for example,

for the

> reading of The Night Before Christmas remains a tradition for us,

and

> now curls up between and me for it.

> So, I know where you are and suspect that you have much to

anticipate

> in the future - and it will probably hit when least expected!

> Hugs - Martha

> Perhaps you shouldn't give up on dolls. has been feeding

hers for

> ages now and tells me when they're crying. It just took awhile.

The dolls

> had a lonely time on her chest of drawers for many years.

>

>

>

>

[Guest guest]

Wow... I just read the string of posts and suddenly

feel right at home again with this group (though I am

behind over 600 emails!). I think that it is quite

possible that a bunch of us hang out at and

Noble, in our respective states, for a similar reason.

Though I always loved to do that before I had

children, the things I read and how I read them are

just different now.

I find peace knowing I am not alone.

ina, mom to Luca (3) & Vinny (17 months w/ cHARgE)

--- jkhayes95 wrote:

> Thank you, for, describing how I feel too.

> And thank you,

> Jillana, for letting me know I am not the only one

> hanging out at

> and Noble for that reason. :-)

>

> From an adult who's still perfecting the clever

> disguise,

>

> Janay

> Rasha's Mom

>

>

> >

> > , first of all, I understand very much how

> you feel. My

> daughter is 18 and I go through those type of

> emotions from time to

> time. I think it is related to my grief of Caitlin

> not being able to

> share in the same world I live in. I hope you can

> remember that it

> is OK to be down. There is no need to kick yourself

> my dear.... you

> have plenty of company. If someone tells you they

> never get down

> about things like this, they are in denial.

> > As far as being lost when is gone, that is

> normal as well.

> At your daughter's age, so much physical, emotional

> and mental being

> goes to her (and possibly your spouse) leaving you

> without much of a

> reserve. Keep taking time for yourself and you will

> figure out how

> to not be so lost and how to keep a reserve of

> energy for yourself.

> One thing I had to learn is not plan work while my

> kids were gone

> and to make this " Jillana " time. Plan something you

> know won't be a

> trigger for the grief involved for you with

> right now. I plan

> things like sitting at and Noble with a great

> cup of coffee

> and looking up books I have wanted to look at.

> Poetry is a big one

> for me. Love the stuff and there is never enough

> silence in the

> house to actually deliberate over the prose. What

> did you like to do

> B.C. (Before Children)? Thinking back to those times

> made it easier

> for me to think of things to nurture myself. Do you

> like to take

> photos? Doesn't matter if you are good at it or

> > not but make sure you take " " time and try

> to not make it

> all about being a Mom. You will be so much healthier

> and sane for it.

> > As far as the Holiday experience, it sounds like

> you try to make

> sure it matters to her. I include her in ornament

> shopping and in

> the smells of the Holidays. I walked about a

> Christmas tree lot

> letting Caitlin feel and experience the trees... I

> think Caitlin

> can't smell but include those. I have learned in my

> many years of

> life with Caitlin that it isn't about the traditions

> as much as the

> experience. Each holiday is a 'once in a lifetime'

> experience and so

> we chose to focus on that.I take my girl to see

> signing Santa every

> year. People think it is age inappropriate but I sat

> on Santa's lap

> too and thought it was a hoot and a half. I even

> purchased a picture

> to have as a memento of my playfulness. If I can't

> give her

> everything I had, I will do my best to give her

> everything I can to

> make her life as meaningful as my family memories to

> me.

> > I am thankful as well for all we have in our

> daughter. I have

> learned much from being there for her and helping

> her along the path

> that is her life that in while walking with her a

> step and a half

> behind, I learned more about the path for mine.

> > I applaud you for your honesty and candor. It

> makes me feel right

> at home here.

> >

> > Jillana

> >

> >

> > Cleverly Disguised As A Responsible Adult.

> >

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

> > Check out the all-new Yahoo! Mail beta - Fire up a

> more powerful

> email and get things done faster.

> >

> > [Non-text portions of this message have been

> removed]

> >

>

>

>

________________________________________________________________________________\

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[Guest guest]

can u give info on nissan or fundaplication please

[Guest guest]

, I can surely sympathize with you! I've had the same feelings

when was younger. However, as the years have gone by, I've

realized that in some ways, sometimes has it better than my

other non-CHARGE kids. When my other children walk down the hall in

school, other children and teachers who don't share classes with them

may walk right past them. When I walk down the school hallways with

, every last person going by says hello to him. Everyone I

speak to tells me that he brightens their day. When we go to doctor's

appointments, the staff and doctors are charmed by him. He feels so

comfortable in his world because he just gets so much love from

everyone. He has become so outgoing! I'm sure you will see the same

things over time. He used to have no interest in things when he was

younger, but we took him everywhere. I know it's hard to see past

today, but I just want you to know that I hear you!! I truly hope you

all enjoy your holidays.

By the way, about photos: We love Picture People! They are great. We

went just a couple of months ago with my niece and nephew. When the

girl was trying to tell where to stand, I told her that he

might not understand her, so she will need to lead him and physically

place him where he needed to stand. She took the cue right away and

was great about it. We've had the clueless photographer before at

JCPenney who couldn't understand why couldn't sit up and one

at Sears who kept yelling " NO! " at him when he started to flap his

arms during a photo shoot. I love Picture People's props and the fact

that you get the whole package back in an hour!!

[Guest guest]

Thanks for your note, . I'm feeling a little better now about the

holidays. I think part of my sadness this past weekend just stemmed from

not being here. I always have a hard time adjusting when she's not here for a

few days. I think our lives are so structured around here when is here,

it's hard for me to jump to unstructured days and know what to do with myself.

Maybe I should use 's calendar system when she's gone! :-)

I think too much when she's gone, too. When she's here, we stay busy and on

the move and just live in the moment. When she's gone, I tend to sometimes

start dwelling too much on the sad thoughts instead of celebrating the joys. I

always need to remind myself that, in 's eyes, she's not missing a

thing--she is happy with the world just the way it is. Anything that I feel is

missing for her is only in MY eyes, because I'm thinking of things in terms of

my perception of the world, not hers.

I love the story of and how everyone loves him at school. The kids

and teachers at 's school are that way with her, too--everyone always says

hi to her and has a smile for her when she's walking down the hall. It's so fun

to watch!

Happy Holidays!

, mom to (4)

http://kauffmanlak.blogspot.com/

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