Re: Friend very sad about ds child

[Guest guest]

Hypermobility Syndrome and it can be very painful and does result in a lot more

injuries to my joints.

Hugs

Beth

http://www.tracheostomy.com/trachkids/kids2/brittany.htm

I am the " special needs " child. I am your teacher. If you allow me, I will teach

you what is really important in life. I will give you and teach you

unconditional love. I gift you with my innocent trust and my total dependency. I

teach you about how precious this life is and about not taking things for

granted. I teach you about forgetting your own needs and desires and dreams. I

teach you giving. Most of all, I teach you hope and faith. ~Author Unknown~

[Guest guest]

In a message dated 5/8/2005 6:01:04 PM Central Standard Time,

CMancari@... writes:

I will admit there are times when I feel sad about

Nick's having Down Syndrome but they don't linger. Those times come when I

see

other kids his age doing things Nick currently can't do. Those times come

occasionally when I tried to envision what future Nick might have; of

course, I

try to remind myself that no matter what future I foresee for any of my

children there are no guarantees. Because of Nick, and his diagnosis, I

believe I

have accepted and truly embraced the ability to pray for what God wants for

my child. Having a relationship with God, I know, from reading his word,

that

HIS plans for each of us is to prosper us and not to harm us. By accepting

that for my children, I know that no matter what things will work out for

God's glory. Perhaps, if your friend has a relationship with God that can

be

pointed out to her and she can accept that all will work out.

Cari

HI

Im a bit late responding to this thread but I have to admit I still struggle

with issues concerning Sara, not the dx of DS but the dx of Epilepsy. I'll

find myself teary and angry that with all of the struggles Sara's faces that

she now has to deal with this too. Epilepsy is not just seizures ............

its the inability to control them, the lack of independence she now has and

side effects of the medicine. Some times I wonder if I'll ever get to a

comfort zone with this dx ................ but as you stated Cari my faith is

the

only comfort zone I have, knowing that this is in the Lords hands and I'm the

tool he's given Sara. Truthfully the only support I have is , who shares

this same dx with her son. Im praying once we get to Nashville the Drs.

there will be more supportive.

Ive learned in life we all move in different speeds, it takes some of us

longer to accept what we are given and I am not one who gives up hope that a

parent will come to terms with an issue .............. If I did others would

give up on me I do hope this parent will have something or someone touch her

life and she will see .................. my Mom told me a long time ago " The

deaf cannot hear but they can see " I use this a lot when dealing with people

who cannot hear me or understand me, eventually with my walk they will see

Kathy mom to Sara 13

¸...¸ ___/ /\ \___ ¸...¸

,·´º o`·, /__/ _/\_ \__\ ,·´º o`·,

```)¨(´´´ | | | | | | | | | ```)¨(´´´

¸,.-·²°´ ¸,.-·~·~·-.,¸ `°²·-.¸

As for me and my house, we will serve the Lord.

Josh. 24:15

[Guest guest]

In a message dated 5/8/2005 6:01:04 PM Central Standard Time,

CMancari@... writes:

I will admit there are times when I feel sad about

Nick's having Down Syndrome but they don't linger. Those times come when I

see

other kids his age doing things Nick currently can't do. Those times come

occasionally when I tried to envision what future Nick might have; of

course, I

try to remind myself that no matter what future I foresee for any of my

children there are no guarantees. Because of Nick, and his diagnosis, I

believe I

have accepted and truly embraced the ability to pray for what God wants for

my child. Having a relationship with God, I know, from reading his word,

that

HIS plans for each of us is to prosper us and not to harm us. By accepting

that for my children, I know that no matter what things will work out for

God's glory. Perhaps, if your friend has a relationship with God that can

be

pointed out to her and she can accept that all will work out.

Cari

HI

Im a bit late responding to this thread but I have to admit I still struggle

with issues concerning Sara, not the dx of DS but the dx of Epilepsy. I'll

find myself teary and angry that with all of the struggles Sara's faces that

she now has to deal with this too. Epilepsy is not just seizures ............

its the inability to control them, the lack of independence she now has and

side effects of the medicine. Some times I wonder if I'll ever get to a

comfort zone with this dx ................ but as you stated Cari my faith is

the

only comfort zone I have, knowing that this is in the Lords hands and I'm the

tool he's given Sara. Truthfully the only support I have is , who shares

this same dx with her son. Im praying once we get to Nashville the Drs.

there will be more supportive.

Ive learned in life we all move in different speeds, it takes some of us

longer to accept what we are given and I am not one who gives up hope that a

parent will come to terms with an issue .............. If I did others would

give up on me I do hope this parent will have something or someone touch her

life and she will see .................. my Mom told me a long time ago " The

deaf cannot hear but they can see " I use this a lot when dealing with people

who cannot hear me or understand me, eventually with my walk they will see

Kathy mom to Sara 13

¸...¸ ___/ /\ \___ ¸...¸

,·´º o`·, /__/ _/\_ \__\ ,·´º o`·,

```)¨(´´´ | | | | | | | | | ```)¨(´´´

¸,.-·²°´ ¸,.-·~·~·-.,¸ `°²·-.¸

As for me and my house, we will serve the Lord.

Josh. 24:15

[Guest guest]

In a message dated 5/15/2005 9:16:27 PM Central Standard Time,

cindysue@... writes:

Kathy - it's ironic that you are hanging onto something your mother said.

My mom said before she died when was 7 weeks old, " It will be ok,

just wait and see " . I hang onto that like you would not believe! Oh

yes --you would .

ROTFLOL Can you imagine what line our kids will hang on to lol

................. betting the line " DO IT, Im to tired to argue " will be the one

that

sticks lol

Kathy mom to Sara 13 ............... not as witty as my mom

¸...¸ ___/ /\ \___ ¸...¸

,·´º o`·, /__/ _/\_ \__\ ,·´º o`·,

```)¨(´´´ | | | | | | | | | ```)¨(´´´

¸,.-·²°´ ¸,.-·~·~·-.,¸ `°²·-.¸

As for me and my house, we will serve the Lord.

Josh. 24:15

[Guest guest]

In a message dated 5/15/2005 9:16:27 PM Central Standard Time,

cindysue@... writes:

Kathy - it's ironic that you are hanging onto something your mother said.

My mom said before she died when was 7 weeks old, " It will be ok,

just wait and see " . I hang onto that like you would not believe! Oh

yes --you would .

ROTFLOL Can you imagine what line our kids will hang on to lol

................. betting the line " DO IT, Im to tired to argue " will be the one

that

sticks lol

Kathy mom to Sara 13 ............... not as witty as my mom

¸...¸ ___/ /\ \___ ¸...¸

,·´º o`·, /__/ _/\_ \__\ ,·´º o`·,

```)¨(´´´ | | | | | | | | | ```)¨(´´´

¸,.-·²°´ ¸,.-·~·~·-.,¸ `°²·-.¸

As for me and my house, we will serve the Lord.

Josh. 24:15

[Guest guest]

Im a bit late responding to this thread but I have to admit I still

struggle

with issues concerning Sara, not the dx of DS but the dx of Epilepsy. I'll

find myself teary and angry that with all of the struggles Sara's faces

that

she now has to deal with this too. Epilepsy is not just seizures

.............

its the inability to control them, the lack of independence she now has and

side effects of the medicine.

It's funny how we accept things. To me (with the exception of the first

seizure which was horrific), I accepted that pretty well but my heart breaks

when he does have a seizure. The only thing I struggle with is the

behaviors - and only when they are really severe (thank god, not for

months!). I can handle the normal DS related behaviors - but not he

physical aggression directed towards me. I can't imagine what he is feeling

and thinking when he gets that Chucky look on his face. We've come such a

long way in the past few months.

As soon as I can schedule some time in, I'm going to see if 's friend

Burch will go to the mall with us. has never had a friend over and

he just loves Burch and andria (different story...she is his crush).

can be motivated by his friends. His teacher does this all the time

and I've used " Let's see if Burch is shopping " to get out of the car

when he won't budge (and it works!). If does go to the mall and

does ok with me, that will be HUGE progress.

Kathy - it's ironic that you are hanging onto something your mother said.

My mom said before she died when was 7 weeks old, " It will be ok,

just wait and see " . I hang onto that like you would not believe! Oh

yes --you would .

must be passing gas - he just shouted " Mommy fart " - trying to put

the blame on me....lol!

---

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[Guest guest]

Im a bit late responding to this thread but I have to admit I still

struggle

with issues concerning Sara, not the dx of DS but the dx of Epilepsy. I'll

find myself teary and angry that with all of the struggles Sara's faces

that

she now has to deal with this too. Epilepsy is not just seizures

.............

its the inability to control them, the lack of independence she now has and

side effects of the medicine.

It's funny how we accept things. To me (with the exception of the first

seizure which was horrific), I accepted that pretty well but my heart breaks

when he does have a seizure. The only thing I struggle with is the

behaviors - and only when they are really severe (thank god, not for

months!). I can handle the normal DS related behaviors - but not he

physical aggression directed towards me. I can't imagine what he is feeling

and thinking when he gets that Chucky look on his face. We've come such a

long way in the past few months.

As soon as I can schedule some time in, I'm going to see if 's friend

Burch will go to the mall with us. has never had a friend over and

he just loves Burch and andria (different story...she is his crush).

can be motivated by his friends. His teacher does this all the time

and I've used " Let's see if Burch is shopping " to get out of the car

when he won't budge (and it works!). If does go to the mall and

does ok with me, that will be HUGE progress.

Kathy - it's ironic that you are hanging onto something your mother said.

My mom said before she died when was 7 weeks old, " It will be ok,

just wait and see " . I hang onto that like you would not believe! Oh

yes --you would .

must be passing gas - he just shouted " Mommy fart " - trying to put

the blame on me....lol!

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.859 / Virus Database: 585 - Release Date: 2/16/2005

[Guest guest]

must be passing gas - he just shouted " Mommy fart " - trying to put

the blame on me....lol!

Now is that a 'male' thing or a 'DS' thing - Trent will always blame

someone else -

many years ago, around Christmas time when the shops are busy, the four kids

and I were in K-mart in line waiting to be served - when Trent, farted

extremely loudly and very quickly in a loud voice blamed - who at the

time would have been about 16 - we all cracked up laughing including

although his face was extremely red from embarrassment.

In all situations I look for the positive - Trent communicated along with

showing a good sense of humour!

Keep smiling

Jan, mother of Trent 20yo w/DS from the LandDownUnder

[Guest guest]

must be passing gas - he just shouted " Mommy fart " - trying to put

the blame on me....lol!

Now is that a 'male' thing or a 'DS' thing - Trent will always blame

someone else -

many years ago, around Christmas time when the shops are busy, the four kids

and I were in K-mart in line waiting to be served - when Trent, farted

extremely loudly and very quickly in a loud voice blamed - who at the

time would have been about 16 - we all cracked up laughing including

although his face was extremely red from embarrassment.

In all situations I look for the positive - Trent communicated along with

showing a good sense of humour!

Keep smiling

Jan, mother of Trent 20yo w/DS from the LandDownUnder

[Guest guest]

ROTFLOL Can you imagine what line our kids will hang on to lol

................. betting the line " DO IT, Im to tired to argue " will be the one

that

sticks lol

Kathy mom to Sara 13 ............... not as witty as my mom

¸...¸ ___/ /\ \___ ¸...¸

,·´º o`·, /__/ _/\_ \__\ ,·´º o`·,

```)¨(´´´ | | | | | | | | | ```)¨(´´´

¸,.-·²°´ ¸,.-·~·~·-.,¸ `°²·-.¸

As for me and my house, we will serve the Lord.

Josh. 24:15

We already have one.......................

" Don't even think about it! "

is usually saying this to her sister!

Sharon

[Guest guest]

ROTFLOL Can you imagine what line our kids will hang on to lol

................. betting the line " DO IT, Im to tired to argue " will be the one

that

sticks lol

Kathy mom to Sara 13 ............... not as witty as my mom

¸...¸ ___/ /\ \___ ¸...¸

,·´º o`·, /__/ _/\_ \__\ ,·´º o`·,

```)¨(´´´ | | | | | | | | | ```)¨(´´´

¸,.-·²°´ ¸,.-·~·~·-.,¸ `°²·-.¸

As for me and my house, we will serve the Lord.

Josh. 24:15

We already have one.......................

" Don't even think about it! "

is usually saying this to her sister!

Sharon

[Guest guest]

In a message dated 5/16/2005 5:37:29 AM Central Standard Time,

huie@... writes:

We already have one.......................

" Don't even think about it! "

is usually saying this to her sister!

Sharon

HI Sharon

This is what Sara says too lol

My favorite lately is " Focus Mom .... focus " taking her pointer finger

touching her nose and then mine

Ohhhhh I love them

Kathy mom to Sara 13

¸...¸ ___/ /\ \___ ¸...¸

,·´º o`·, /__/ _/\_ \__\ ,·´º o`·,

```)¨(´´´ | | | | | | | | | ```)¨(´´´

¸,.-·²°´ ¸,.-·~·~·-.,¸ `°²·-.¸

As for me and my house, we will serve the Lord.

Josh. 24:15

[Guest guest]

In a message dated 5/16/2005 5:37:29 AM Central Standard Time,

huie@... writes:

We already have one.......................

" Don't even think about it! "

is usually saying this to her sister!

Sharon

HI Sharon

This is what Sara says too lol

My favorite lately is " Focus Mom .... focus " taking her pointer finger

touching her nose and then mine

Ohhhhh I love them

Kathy mom to Sara 13

¸...¸ ___/ /\ \___ ¸...¸

,·´º o`·, /__/ _/\_ \__\ ,·´º o`·,

```)¨(´´´ | | | | | | | | | ```)¨(´´´

¸,.-·²°´ ¸,.-·~·~·-.,¸ `°²·-.¸

As for me and my house, we will serve the Lord.

Josh. 24:15

[Guest guest]

Years ago there was a Blues Clues episode where they talked about frustration

and how to deal with it. They talked about " stop, breathe, and think " . I taped

the episode and watched it with probably hundreds of times. Even now,

when we talk about choices at school, usually related to behavior, she will say

" stop, breathe and think " , with a deeeeeeeeep breath in the middle.

The other day, I was frustrated about something, can't remember now, and she was

behind me saying " All right Mama, stop, breathe and think " (with that very

deeeeeep breath in the middle).

Sharon H.

Mom to , (13, DS) and , (9)

South Carolina

Re: Friend very sad about ds child

In a message dated 5/16/2005 5:37:29 AM Central Standard Time, huie@...

writes:

We already have one.......................

" Don't even think about it! "

is usually saying this to her sister!

Sharon

HI Sharon

This is what Sara says too lol

My favorite lately is " Focus Mom .... focus " taking her pointer finger

touching her nose and then mine

Ohhhhh I love them

Kathy mom to Sara 13

¸...¸ ___/ /\ \___ ¸...¸

,·´º o`·, /__/ _/\_ \__\ ,·´º o`·,

```)¨(´´´ | | | | | | | | | ```)¨(´´´

¸,.-·²°´ ¸,.-·~·~·-.,¸ `°²·-.¸

As for me and my house, we will serve the Lord.

Josh. 24:15

[Guest guest]

Years ago there was a Blues Clues episode where they talked about frustration

and how to deal with it. They talked about " stop, breathe, and think " . I taped

the episode and watched it with probably hundreds of times. Even now,

when we talk about choices at school, usually related to behavior, she will say

" stop, breathe and think " , with a deeeeeeeeep breath in the middle.

The other day, I was frustrated about something, can't remember now, and she was

behind me saying " All right Mama, stop, breathe and think " (with that very

deeeeeep breath in the middle).

Sharon H.

Mom to , (13, DS) and , (9)

South Carolina

Re: Friend very sad about ds child

In a message dated 5/16/2005 5:37:29 AM Central Standard Time, huie@...

writes:

We already have one.......................

" Don't even think about it! "

is usually saying this to her sister!

Sharon

HI Sharon

This is what Sara says too lol

My favorite lately is " Focus Mom .... focus " taking her pointer finger

touching her nose and then mine

Ohhhhh I love them

Kathy mom to Sara 13

¸...¸ ___/ /\ \___ ¸...¸

,·´º o`·, /__/ _/\_ \__\ ,·´º o`·,

```)¨(´´´ | | | | | | | | | ```)¨(´´´

¸,.-·²°´ ¸,.-·~·~·-.,¸ `°²·-.¸

As for me and my house, we will serve the Lord.

Josh. 24:15