Re: from the heart stuff

[Guest guest]

Gail,

You are definately not alone! I have those feelings frequently. My twins are

two and I think about the " what is going to happens " alot, but I have to

tell myself that things will be worked out as we go, and as they grow so

will we. I'm just thankful they start as babies and not teenagers!!! I'm

glad that you were able to express your feelings as I can never seem to do

so. Hang in there. Hugs to you!

Kim mom to Abigail and ds - 2yrs and Mikayla - 4yrs

from the heart stuff

> From: GVanHouten <rjvh@...>

>

> If you all read this, thanks! But I feel I must get my " real " thoughts

> and feelings out, not ment to offend anyone, but you can all let me know

> what you think.

> It's like this, first of all I feel I get this " emotional " this time

> every month{PMS I guess}It's like i dare to entertain my true feelings!

> " I didn't want a child with Ds, I am still in shock, sad, bummed! It

> hasn't gone away! I am feeling a little better since almost 9 months

> ago.I'm also in denial, when I hear what other parents challenges are

> with their older children, I feel sad for them, but then say in my head,

> that won't be Tara! How will grow up, knowing that's his twin? A

> sister who has mental retardation? Will he think he does too? Will his

> " friends " think that too when he brings them home and they meet Tara?

> How about Bobby and Jillian? Will peers make fun of them because of

> their baby sister? Husband and I planned to room Jillain and Tara

> together eventually, will that happen? Should we, will Tara grow to be a

> pain or embarrasment for Jillian when she brings her girlfriends home?

> {I'm really crying now}Sometimes I hold eric and put him to bed and

> think, we only wanted one more child, but we need to go on fertility

> drugs{for all my kids} and insemination to get pregnant, it worked first

> cycle. we had to adjust to twins, now to this! I have'nt live a princess

> life, I consider myself to be pretty resilient, but this is really

> testing me. a neighbor recently sipped and said " thank god this didn't

> happen to us!{she also has boy/girl twins} I was numb

> I know my friends from my town really love me and my family, they were

> just as shocked and saddened, and were really there for me and husband

> and my kids , they took my older tow out to the pool all summer, BUT I

> know they also feel sorry for me/us, and glad this didn't happen to tham

> either.I hate that pitty thing. On the one hand I on purpose stay

> involved in our church and community and friends, I want Tara out there,

> I want her{and she is right now by most people}excepted, she will to

> grow up with my friends children, and go to the puplic schools. But man

> this is bumming me out. BUT I love her soo much!

> But I sometimes can't understand when parents say how blessed they are,

> how wonderful their child is. Am I not there yet? In some place where

> all these other parents are? I want to be, I want to except her 100%,

> how can I expect my children to, or others if I don't? Am I missing

> somthing screw in my brain?

> Ok this is long enough, sorry , but I needed to do this, know one else

> would understand these mixed emotions, IF you all do???????

> thanks Gail

> don't feel like such a good mom today?

>

> > http://DSyndrome.com/Multiples

>

[Guest guest]

Gail, I guess this is " weepy tuesday " for the both of

us. Sometimes we are entitled. Your feelings are

ones that we've all experienced, and as you read from

my post, will continue to experience. The only words

of wisdom I can offer you is, this too shall pass, and

yes, you ARE a good mom, you wouldn't be if you didn't

have these feelings and acknowledge them. I guess we

never truly get OVER it, but it just gets a little

easier with time. ((({{{HUGS}}})))

Judi-who's a little blue today too,

but feels better after sending her post.

__________________________________________________

[Guest guest]

Hi Gail,

I guess I really don't know what to say to you except that you're not alone

and that I feel the same way quite often about a (DS). When I feel like

this I try to turn my thoughts to God and ask for his guidance, strength,

and support.

The last 16 months have not been easy for my husband and I. Also, for my

family. They saw what we have gone through with a.

Recently, my older brother had gotten married in July. He had married a

woman from Russia (a internet romance) and she had gotten pregnant right

away and found out that their baby boy had DS and some other defect that my

brother did not want to go into detail with us on, so they ended up having

the labor induced at 4 1/2 months and aborting it. Even though most other

family members were against it. Well, it's to late now, but I think my

brother really regrets doing that. He said that he held the baby and it

looked normal. His new wife didn't seem to want anything to do with it. I

don't think there marriage will last.

Sometimes Life is great and sometimes Life seems to be full of hard lessons.

I guess now I'm kind of getting my emotions out here. Sorry!

- Mom to a (DS) and Cory 16 months

from the heart stuff

> From: GVanHouten <rjvh@...>

>

> If you all read this, thanks! But I feel I must get my " real " thoughts

> and feelings out, not ment to offend anyone, but you can all let me know

> what you think.

> It's like this, first of all I feel I get this " emotional " this time

> every month{PMS I guess}It's like i dare to entertain my true feelings!

> " I didn't want a child with Ds, I am still in shock, sad, bummed! It

> hasn't gone away! I am feeling a little better since almost 9 months

> ago.I'm also in denial, when I hear what other parents challenges are

> with their older children, I feel sad for them, but then say in my head,

> that won't be Tara! How will grow up, knowing that's his twin? A

> sister who has mental retardation? Will he think he does too? Will his

> " friends " think that too when he brings them home and they meet Tara?

> How about Bobby and Jillian? Will peers make fun of them because of

> their baby sister? Husband and I planned to room Jillain and Tara

> together eventually, will that happen? Should we, will Tara grow to be a

> pain or embarrasment for Jillian when she brings her girlfriends home?

> {I'm really crying now}Sometimes I hold eric and put him to bed and

> think, we only wanted one more child, but we need to go on fertility

> drugs{for all my kids} and insemination to get pregnant, it worked first

> cycle. we had to adjust to twins, now to this! I have'nt live a princess

> life, I consider myself to be pretty resilient, but this is really

> testing me. a neighbor recently sipped and said " thank god this didn't

> happen to us!{she also has boy/girl twins} I was numb

> I know my friends from my town really love me and my family, they were

> just as shocked and saddened, and were really there for me and husband

> and my kids , they took my older tow out to the pool all summer, BUT I

> know they also feel sorry for me/us, and glad this didn't happen to tham

> either.I hate that pitty thing. On the one hand I on purpose stay

> involved in our church and community and friends, I want Tara out there,

> I want her{and she is right now by most people}excepted, she will to

> grow up with my friends children, and go to the puplic schools. But man

> this is bumming me out. BUT I love her soo much!

> But I sometimes can't understand when parents say how blessed they are,

> how wonderful their child is. Am I not there yet? In some place where

> all these other parents are? I want to be, I want to except her 100%,

> how can I expect my children to, or others if I don't? Am I missing

> somthing screw in my brain?

> Ok this is long enough, sorry , but I needed to do this, know one else

> would understand these mixed emotions, IF you all do???????

> thanks Gail

> don't feel like such a good mom today?

>

> > http://DSyndrome.com/Multiples

>

[Guest guest]

Gail,

You are only human. When I get really bummed,

which can be quite frequently, I think of someone else

in a worse situation. There is a family that I work

with in my town, who had her second child back in

June. He wasn't born without any eyes. Her first child

was born with glaucoma in one eye and without the

other eye. He also has a diagnosis of perhaps severe

autism. She told me oneday, that she was robbed of

taking her kids to Disney World because they couldn't

see the lights, etc. Thank God Landon will be able to

enjoy all those things.When she said that to me, I

literally had to fight back the tears, partly for her

and partly for myself(guilty) because of how I feel

sometimes. I also worked with a family who had

fraternal girl/boy twins and both of them had a rare

disease of ataxia telangectasia. They would gradually

lose motor skills by age five, progressively lose

sight, speech becomes slurred and eventually they

are in wheelchair full time by the age or prior to the

age of ten. Death usually happens by their early or

late teens. The little girl died a couple of months

ago at the age of 12. Her brother is pretty much in

the last stages. This mom is going to have to go

through this twice and explain to her little boy the

reasons of his sister's death. When I think of these

two families and the crisis that they are

encountering, I thank God for Landon only having DS. I

didn't meant to add to the depression, I just wanted

to let yall know how I try to cope. The good days are

far more than they were 6 months ago Gail. ((((((Hugs

to you too)))))))))))))). - mom

to Landon (ds) and Ashton 18months

GVanHouten

<rjvh@...> wrote:

> If you all read this, thanks! But I feel I must get

> my " real " thoughts

> and feelings out, not ment to offend anyone, but you

> can all let me know

> what you think.

> It's like this, first of all I feel I get this

> " emotional " this time

> every month{PMS I guess}It's like i dare to

> entertain my true feelings!

> " I didn't want a child with Ds, I am still in shock,

> sad, bummed! It

> hasn't gone away! I am feeling a little better since

> almost 9 months

> ago.I'm also in denial, when I hear what other

> parents challenges are

> with their older children, I feel sad for them, but

> then say in my head,

> that won't be Tara! How will grow up, knowing

> that's his twin? A

> sister who has mental retardation? Will he think he

> does too? Will his

> " friends " think that too when he brings them home

> and they meet Tara?

> How about Bobby and Jillian? Will peers make fun of

> them because of

> their baby sister? Husband and I planned to room

> Jillain and Tara

> together eventually, will that happen? Should we,

> will Tara grow to be a

> pain or embarrasment for Jillian when she brings her

> girlfriends home?

> {I'm really crying now}Sometimes I hold eric and put

> him to bed and

> think, we only wanted one more child, but we need to

> go on fertility

> drugs{for all my kids} and insemination to get

> pregnant, it worked first

> cycle. we had to adjust to twins, now to this! I

> have'nt live a princess

> life, I consider myself to be pretty resilient, but

> this is really

> testing me. a neighbor recently sipped and said "

> thank god this didn't

> happen to us!{she also has boy/girl twins} I was

> numb

> I know my friends from my town really love me and my

> family, they were

> just as shocked and saddened, and were really there

> for me and husband

> and my kids , they took my older tow out to the pool

> all summer, BUT I

> know they also feel sorry for me/us, and glad this

> didn't happen to tham

> either.I hate that pitty thing. On the one hand I on

> purpose stay

> involved in our church and community and friends, I

> want Tara out there,

> I want her{and she is right now by most

> people}excepted, she will to

> grow up with my friends children, and go to the

> puplic schools. But man

> this is bumming me out. BUT I love her soo much!

> But I sometimes can't understand when parents say

> how blessed they are,

> how wonderful their child is. Am I not there yet? In

> some place where

> all these other parents are? I want to be, I want to

> except her 100%,

> how can I expect my children to, or others if I

> don't? Am I missing

> somthing screw in my brain?

> Ok this is long enough, sorry , but I needed to do

> this, know one else

> would understand these mixed emotions, IF you all

> do???????

> thanks Gail

> don't feel like such a good mom today?

>

>

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

> http://DSyndrome.com/Multiples

>

<HR>

<html>

>

__________________________________________________

[Guest guest]

Hi Gail, , everyone;

...I can't believe what you had to watch your brother do/go

through....how terrible. Five months after was born, 's (my

husband) first cousin had a baby boy (6 weeks premature......was in a car

accident) and this baby boy has down syndrome as well, its kinda weird that

ds has never been in either of our families and then it happened two times

within 5 months of each other.....this really doesn't have anything to do

with the posts lately but I just felt like telling everyone about that.

Gail, I know all the feeling that you have all too well and I think

part of the problem for me is having a husband that hasn't been very

supportive of the whole situation. Its hard to keep positive when your

significant other isn't. I wonder the things that you do too. Will Nicala

be made fun of because of ? Especially because not only are they

siblings BUT they are twins. Should I separate them in school right away?

Keep them together? My husband wants to separate them and I am undecided.

I often think that I should use the twins " due date (March 5) " for 's

b-day and the " actual birth date (Dec 8) " for Nicala. We had to help

(push him along) but its been quite the opposite. is such a

demanding child I find no time in the day to spend with the twins and my

heart just aches when I see all the things that can do and

can't when she is two years younger then him. I have been kinda down these

past few days and that is because I am realizing that is surpassing

(mostly in the communication area) and I guess I didn't believe that

it would happen this soon. There are still some things that can do

and can't but I am fearing that it won't be long before that isn't

the case anymore. I also keep telling myself that will be better off

then older children with ds because of all the early intervention that is

available now and wasn't before BUT what really are we doing for our

children that any other parent (such as ...Rudy,ds) didn't do? I find

alot of the therapists recommendations are things that any parent would do

naturally out of love for their child. I think that will be better

off then an older person with ds that was institutionalized but that would

be the case of any child, with or without ds. I unlike most on this list do

NOT cry, that is my way of coping, I don't cry. I can't remember the last

time I have cried and the only significant time that I remember crying is

when I was first told of having ds. I guess that maybe I feel that

if I start to cry I will never stop, so I put up my wall and don't cry. I

deal with my feeling by getting pissed off at the medical/education

profession (and setting them straight) researching, researching and

researching, trying to make it thru my days of non-stop crying from

without ending up in the looney bin and hoping that I am doing everything

that I can for . I get very upset if I feel that I have missed out on

something I could of and should have been doing with . is only

three years old now and I feel like there has been so many things that I

should have been doing with him but didn't. What if I had done all that I

should have done, would he be higher functioning? I wish I had know

prenatally that has ds. I wish I had the time that I don't to work

with him. Also, any of the " success " stories that I hear of come from

families that have alot of $. We don't have alot of $ and I feel that it is

unfair that you have to have alot of $ to ensure the success of your child.

The other thing that I notice about the success stories are that the child

with ds usually only has 1 other sibiling, hense the parents have more time

to dedicate to the ds child. Well, I could go on forever BUT will stop now.

Gail, your still in " cure mode " and in some ways still am I. I know you are

looking for answers, some which probably arn't out there, some are. I

believe that NuTriVene-D does have some benefits, but have questioned it at

times (that is why I discontinued its use for a year). Just yesterday, I

ordered a new supply. I believe that NuTriVene-D is better then the other

nutritional suppliments that are offered ( " Hap Caps " , " the U series " ,

" MSBplus " ). There are other alternative therapies out there that I have

tried and some that I would try if I had the money. Out of all the

" alternative therapies " that I have tried the nutritional suppliments are

the ones that I have seen the least results with but after doing alot of

research on the subject I feel that I don't want to miss out on the benefits

even though they may not be incredibly noticable. Ok, there I go again; I

said I was going to stop and I will.

, mom to Nicala and ,ds (3) and (1 & forever unhappy)

[Guest guest]

Ahhh Gail.... honey I wish I was there to give you a huge hug and let you

know it will be ok. Reality is though, it just aint gonna be perfect. But

then again what is? My " babies " are 13 now. Funny age 13. You know what

though? Its ok. I can honestly say Rudy has made it just fine. He has

loads of friends and all of his twin's friends play with him and include him

in parties etc. Of course she has some things she does by herself but all

in all, she includes Rudy in alot, we all do. I have found that people pity

those who pity themselves. I have so many friends and relatives who I think

would rather come to see Rudy than any of the rest of us!! How rude huh?

But thats cool. Rudy is a natural born ham!! He does not realize he has

limitations only rules. I also have to share with you that I went to my

daughter's Christmas choir recital last nite and one of the featured singers

was a 14 yr old boy with DS. He started the recital. Yes I cried, but they

were tears of joy that this young man's parents also have taught him he has

no limitations. And yes, Gail, I am one of the ones who feels blessed but I

also feel you will get there too. Chin up and hug the baby!!

mom to Rudy (ds) & 13, TJ 16

[Guest guest]

Hi Gail

You are far from being a bad Mom! You're a great Mom! We all do the best

we can and sometimes we all doubt our abilites to cope with what has been

given to us. on (nearly 8) and (6 1/2) adore their sisters

and understand fully what DS is. All their friends think its cool that we

use sign language and love coming to our house to play. I really believe it

will always be that way and on and choose to be friends with

the nice kids and say " bye bye " to the kids who aren't so kind! Isn't that

neat! My time too is no longer wasted on people who, I have discovered

since having Ems and Nickers, didn't really care for us at all. Like I said

to Judi - I have had my fair share of blue days to and will continue to I

guess. Early on after Nicki I felt I needed to go onto Prozac which I am no

longer on but I so low in a pit, I couldn't see light!

I hope you feel better soon and take some Evening Primrose Oil, it's great

for PMT!

(((((BIG BEAR HUG FOR YOU)))))

Carolyn

from the heart stuff

> From: GVanHouten <rjvh@...>

>

> If you all read this, thanks! But I feel I must get my " real " thoughts

> and feelings out, not ment to offend anyone, but you can all let me know

> what you think.

> It's like this, first of all I feel I get this " emotional " this time

> every month{PMS I guess}It's like i dare to entertain my true feelings!

> " I didn't want a child with Ds, I am still in shock, sad, bummed! It

> hasn't gone away! I am feeling a little better since almost 9 months

> ago.I'm also in denial, when I hear what other parents challenges are

> with their older children, I feel sad for them, but then say in my head,

> that won't be Tara! How will grow up, knowing that's his twin? A

> sister who has mental retardation? Will he think he does too? Will his

> " friends " think that too when he brings them home and they meet Tara?

> How about Bobby and Jillian? Will peers make fun of them because of

> their baby sister? Husband and I planned to room Jillain and Tara

> together eventually, will that happen? Should we, will Tara grow to be a

> pain or embarrasment for Jillian when she brings her girlfriends home?

> {I'm really crying now}Sometimes I hold eric and put him to bed and

> think, we only wanted one more child, but we need to go on fertility

> drugs{for all my kids} and insemination to get pregnant, it worked first

> cycle. we had to adjust to twins, now to this! I have'nt live a princess

> life, I consider myself to be pretty resilient, but this is really

> testing me. a neighbor recently sipped and said " thank god this didn't

> happen to us!{she also has boy/girl twins} I was numb

> I know my friends from my town really love me and my family, they were

> just as shocked and saddened, and were really there for me and husband

> and my kids , they took my older tow out to the pool all summer, BUT I

> know they also feel sorry for me/us, and glad this didn't happen to tham

> either.I hate that pitty thing. On the one hand I on purpose stay

> involved in our church and community and friends, I want Tara out there,

> I want her{and she is right now by most people}excepted, she will to

> grow up with my friends children, and go to the puplic schools. But man

> this is bumming me out. BUT I love her soo much!

> But I sometimes can't understand when parents say how blessed they are,

> how wonderful their child is. Am I not there yet? In some place where

> all these other parents are? I want to be, I want to except her 100%,

> how can I expect my children to, or others if I don't? Am I missing

> somthing screw in my brain?

> Ok this is long enough, sorry , but I needed to do this, know one else

> would understand these mixed emotions, IF you all do???????

> thanks Gail

> don't feel like such a good mom today?

>

> > http://DSyndrome.com/Multiples

[Guest guest]

Lesfevr21@... wrote:

>

> From: Lesfevr21@...

Gosh , do I sound like an idiot or what? You must think I'm a nut

job{I might be}, BUT, I LOVE to hear stories just like you just told! I

will get thru this, I want to be " there " for all my kids! You're right,

people pity people, who pity themselves, and I WILL NEVER HANG MY HEAD

DOWN! Thanks for sharing your experience, I love to hear/read all about

them, it's important to me!!!!!

Gail mom to Bobby-5 1/2, Jillian-3, and Tara{ds}8months

>

> Ahhh Gail.... honey I wish I was there to give you a huge hug and let you

> know it will be ok. Reality is though, it just aint gonna be perfect. But

> then again what is? My " babies " are 13 now. Funny age 13. You know what

> though? Its ok. I can honestly say Rudy has made it just fine. He has

> loads of friends and all of his twin's friends play with him and include him

> in parties etc. Of course she has some things she does by herself but all

> in all, she includes Rudy in alot, we all do. I have found that people pity

> those who pity themselves. I have so many friends and relatives who I think

> would rather come to see Rudy than any of the rest of us!! How rude huh?

> But thats cool. Rudy is a natural born ham!! He does not realize he has

> limitations only rules. I also have to share with you that I went to my

> daughter's Christmas choir recital last nite and one of the featured singers

> was a 14 yr old boy with DS. He started the recital. Yes I cried, but they

> were tears of joy that this young man's parents also have taught him he has

> no limitations. And yes, Gail, I am one of the ones who feels blessed but I

> also feel you will get there too. Chin up and hug the baby!!

> mom to Rudy (ds) & 13, TJ 16

>

> > http://DSyndrome.com/Multiples