Re: Do you have Joy raising your DS child?

[Guest guest]

Carin,

Hang in there. My son, Jimmy, also had a very rough road medically in the

beginning, with heart surgeries, a tracheostomy, and repeated pneumonias. Our

lives were full of doctor's appointments, medical treatments, staff in an out of

our house constantly, and trying to do right by our other children. Life with

small kids is hectic enough - life with sick small kids is another world

altogether. When I looked at Jimmy as a baby, I saw a long list of " to do

items " .....

I'll never forget the day, though, when he was 2 1/2. I was sitting in a rocker

up in his room rocking him to sleep for his afternoon nap. I was looking down

at his little face as he passed from wakefulness to sleep, and all of a sudden,

it felt like my heart would burst with love for him. I'm not sure why it

happened that day, but I realized what a treasure he was and how proud I was of

the medical difficulties he had overcome and all that he had accomplished, none

of it easy for him. Since that day, I have delighted in him. He makes me so

proud, some days I just can't stop grinning. He's now a young man of almost 21,

ready to enter the adult world. He's come further than anyone can ever

believe....and I know he will go on surprising us.

So, like I said, hang in there! The best is yet to come!

[Guest guest]

My husband died shortly after was born, so there was very little joy

in my life until I worked through my grief. Since then, most of the joy in

my life has been due to . Her presence makes everyone happy. She has

made serving others her mission in life.

Granny

On Wednesday, January 11, 2012, gratitudehomeschool <

gratitudehomeschool@...> wrote:

>

>

> Do you have Joy raising your DS child? Have you had it from the

beginning? Did it take awhile to come; if so how long? If you don't have

it, do you feel guilty for not having it (I do)?

>

> I have had so much JOY raising my first three children.

> I have had little, to no Joy, raising my youngest with DS. The start of

life with heart surgeries, and knowing that her heart still isn't right,

etc. hasn't helped. There has been a lot of sorrow surrounding her. She is

monitored, every 6 months, for the moment when congestive heart failure

returns. It isn't just the surgeries though. There are many very difficult

parts of life that I am able to deal with on an emotional level;

disabilities isn't one of them. It has always been my greatest challenge

emotionally.

>

> So if you have joy, would you care to share when it came about and how

you found it with the challenges of DS.

>

> God Bless.

>

> In Christ,

> Carin

>

>

--

*Not for ourselves, but for the world were we born.*

[Guest guest]

I am sorry that you lost your husband Granny. does sound like a joy.

I thought perhaps I should add that my children are 8, 6, 4, & 2. It is our 2

year old that has DS.

> >

> >

> > Do you have Joy raising your DS child? Have you had it from the

> beginning? Did it take awhile to come; if so how long? If you don't have

> it, do you feel guilty for not having it (I do)?

> >

> > I have had so much JOY raising my first three children.

> > I have had little, to no Joy, raising my youngest with DS. The start of

> life with heart surgeries, and knowing that her heart still isn't right,

> etc. hasn't helped. There has been a lot of sorrow surrounding her. She is

> monitored, every 6 months, for the moment when congestive heart failure

> returns. It isn't just the surgeries though. There are many very difficult

> parts of life that I am able to deal with on an emotional level;

> disabilities isn't one of them. It has always been my greatest challenge

> emotionally.

> >

> > So if you have joy, would you care to share when it came about and how

> you found it with the challenges of DS.

> >

> > God Bless.

> >

> > In Christ,

> > Carin

> >

> >

>

> --

> *Not for ourselves, but for the world were we born.*

>

>

>

[Guest guest]

I think I gained so much joy from the fact that everything did

was so much more difficult for her than her older sister, so the

victories were so much sweeter. When walked, it was a great few

days as we were excited for this milestone, when finally

walked, I think we (and our friends/family) were beaming for weeks as we

watched her walk her cute little determined walk. But there were/are

many little day to day things that bring me joy with . She

takes the time to come in and wake me up with a gentle hug and kiss.

She is sensitive to her friend's/sister's feelings, and it brings me joy

to watch her ask " are you OK? " to another child. Telling her to stop

talking because she needs to let someone else have a turn brings me

great joy, since no one knew what her verbal skills would be like....

now she's a regular chatterbox.

Not to say that she's not a teenager! That is not so joyful, especially

with all I am around all the time. But it also brings me a smile when

yells at her sister who is making irritating pencil tapping

noises at the table while they are doing homework, then runs crying down

the hall and slams the door yelling " you are so mean " and then later

will be back at the table and say " it's OK, I'm so over that. " ... I

appreciate this typical teen behavior in her because 10 years ago, I had

no idea of what her teen years would be like.

I think for us, not focusing on what she can't do, or won't be able to

do has been a huge blessing. It's just my personality, and it's been

pretty easy to not focus on the negatives of DS. has been

fairly healthy, so we have not had excessive medical issues to deal with

(more than her sisters for certain, but less than many kids with DS) and

I imagine that does make a difference. Yes, there are time when they

smack you in the face and you have to deal with them, not just as a

" kid " issue, but a " DS " issue. I stress about IEP meetings, and fight

for school administrators on her behalf, but these things don't diminish

they joy that she brings to our family... just like all our kids, we do

what we need to do so that their unique needs are met... 's are

just a little different. I know many parents of children with

disabilities who are able to live their lives this way, and are truly

blessed, and feel the joy of parenting their child with a disability.

But, this doesn't happen for everyone, especially not immediately.

Our philosophy has always been " child first, DS second. " As much as

humanly possible, we treat like our other children, doing what

we have to do to accomodate the DS. But, we have found that with our

high expectations for her, her ability to be successful at school,

included in the community (for example at church, Girl Scouts, etc.) she

has risen to the occasion most of the time. We don't ignore the DS, but

it's certainly not a focus. That's harder when they are younger, since

life revolves around milestones in baby book (and our kids generally not

meeting them), doctor's visits (and hearing what the next test or

procedure that needs to be done), and sometimes even friends/family who

act different/unsupportive because they don't know what to do/say. But,

it seems like once they are walking and communicating, things get much

easier.

I hope you find hope in people's responses!

, mom to (16), (almost 14, DS) and Sammy (12),

plus our newest addition to the household, nephew (18)

On 1/11/2012 10:09 AM, gratitudehomeschool wrote:

>

> Do you have Joy raising your DS child? Have you had it from the

> beginning? Did it take awhile to come; if so how long? If you don't

> have it, do you feel guilty for not having it (I do)?

>

> I have had so much JOY raising my first three children.

> I have had little, to no Joy, raising my youngest with DS. The start

> of life with heart surgeries, and knowing that her heart still isn't

> right, etc. hasn't helped. There has been a lot of sorrow surrounding

> her. She is monitored, every 6 months, for the moment when congestive

> heart failure returns. It isn't just the surgeries though. There are

> many very difficult parts of life that I am able to deal with on an

> emotional level; disabilities isn't one of them. It has always been my

> greatest challenge emotionally.

>

> So if you have joy, would you care to share when it came about and how

> you found it with the challenges of DS.

>

> God Bless.

>

> In Christ,

> Carin

>

>

[Guest guest]

Carin,

The way that I find joy along with all of the challenges is in my belief in

God. I KNOW that has a very special purpose and that he is on this

earth to help teach others about love and acceptance. (Including us!) So,

when things are hard, I remember that and see every single thing he does and

think, how am " I " doing?? We chose to find the " good " side of everything.

When the school complained that he always had his tongue out while working,

we said, " that's awesome! Maybe he will be like Jordan some

day....since he would do that while he was concentrating on making his

million dollar dunk shots " . (then we went to work on figuring out how to

help him keep it in) And, when the school system was complaining that he

was getting out of his seat belt on the bus, we were so excited that he had

reached that level of " independence " . (and then we went to work on safety)

When I got a phone call from his school saying that he had copied a regular

ed kid and had flipped the bird on the playground, we chose to be really

excited that he finally used his finger in isolation! (then we went to

work on teaching him that was not appropriate) Of course, some of this is

just a way to cope with living under a microscope with a child who has a

disability, but it really does help. When I go in his room for the 500th

day that we have had the SAME list of his morning routine and he is sitting

on the floor writing Beiber on ANOTHER piece of paper to hang on his

wall, I chose to find the humor amidst the frustration of him not getting

done what he KNOWS he needs to do. So, we could pretty much wallpaper our

wall with these papers (or posters as he calls them...lol) So in this I

chose to find the positive that when I ask him to show me on his list where

it says, " make more posters " , he laughs, and tells me, " silly, mom! " . These

are the joys that we find along with the frustration that I will be late to

work, or he may miss the bus. (but we keep on plugging along in the

" morning to do list " and it is SLOWLY, but surely coming along) When they

thought he had Leukemia, we chose to bring our family in closer and really

appreciate every second. (Then we praised God when he was ok) When he was

having seizures, we tried to see what we could learn from that too. It may

sound silly, but it really puts a different spin on it. May not work for

everyone, but for us it does.

So, Do we have joy in raising our child with DS? Yes, every single

day!!!!!!!!!!!! BUT, it sometimes takes a spin to make it happen

I wish you the best of luck and we are here as a list to support you as you

go through your trials. We all have them at one time or another. Vent any

time.

Take care,

Kym...mom to 5 including (14 w/ DS)

Do you have Joy raising your DS child?

> Do you have Joy raising your DS child? Have you had it from the

> beginning? Did it take awhile to come; if so how long? If you don't have

> it, do you feel guilty for not having it (I do)?

>

> I have had so much JOY raising my first three children.

> I have had little, to no Joy, raising my youngest with DS. The start of

> life with heart surgeries, and knowing that her heart still isn't right,

> etc. hasn't helped. There has been a lot of sorrow surrounding her. She

> is monitored, every 6 months, for the moment when congestive heart failure

> returns. It isn't just the surgeries though. There are many very

> difficult parts of life that I am able to deal with on an emotional level;

> disabilities isn't one of them. It has always been my greatest challenge

> emotionally.

>

> So if you have joy, would you care to share when it came about and how you

> found it with the challenges of DS.

>

> God Bless.

>

> In Christ,

> Carin

>

>

>

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

>

> Click reply to all for messages to go to the list. Just hit reply for

> messages to go to the sender of the message.

[Guest guest]

Yesterday I walked out of the doctor's office in tears... Hannah was in for

another anti-biotic and I was filling out a mile high stack of forms

because we just moved and this was the first time at the new doc. As I FINALLY

finished the last signature and said, " well, THAT'S done. " Hannah followed

up with a quick " You did it?? You SOLVED it?? You are a clever, clever

woman. "

I almost peed myself.

Yes, there will be joy.

Connie

In a message dated 1/11/2012 1:09:23 P.M. Eastern Standard Time,

gratitudehomeschool@... writes:

Do you have Joy raising your DS child? Have you had it from the

beginning? Did it take awhile to come; if so how long? If you don't have it,

do

you feel guilty for not having it (I do)?

I have had so much JOY raising my first three children.

I have had little, to no Joy, raising my youngest with DS. The start of

life with heart surgeries, and knowing that her heart still isn't right,

etc. hasn't helped. There has been a lot of sorrow surrounding her. She is

monitored, every 6 months, for the moment when congestive heart failure

returns. It isn't just the surgeries though. There are many very difficult

parts of life that I am able to deal with on an emotional level; disabilities

isn't one of them. It has always been my greatest challenge emotionally.

So if you have joy, would you care to share when it came about and how you

found it with the challenges of DS.

God Bless.

In Christ,

Carin

[Guest guest]

This may end up long...

 

When I was pregnant with my first child, I remember being terrified of the

" triple screen " testing, Down syndrome to be exact.  I didn't even know

anything about Ds, but I was afraid of it.  I passed the test and my child was

born normal.

Second child, same thing.  I was so nervous about that dang test, but I passed

it and he was born perfectly fine.

, her pregnancy was a little bit harder, so when I took and passed that

test, I literally thought to myself, Whew, I'll never have to take that test

again and worry about Down syndrome.  And what do you know?  She was born with

Down syndrome.  God is funny like that.

 

It took me 3 weeks to even say Down syndrome.  All I knew was that a person

with Ds only lived to be 30 and they were very mentally challenged.  Actually,

I knew NOTHING, but this is what I thought for those first 3 weeks.  was

not born with any health issues, except a blocked tear duct.  Once the shock

wore off, I started researching and learning about Ds.  The first time we went

to sign papers for to receive therapy, the woman there told me I could put

her in an institution...it was 2001!!  I was floored and told her she couldn't

have my baby.  And that's when it hit me, she was my BABY first.  I decided

right then that I was going to treat her like I would if she didn't have Ds...I

was going to raise her the same way I was raising her brothers.

 

I cried alot of tears.  Not all tears of sadness, though.  is a

beautiful little girl and she made me reach inside myself, way deep inside, into

places I didn't even know existed.  She made me laugh, she tried really hard

(most of the time) and she depended on me, more so than her brothers.  I

remember I got a letter from the National Down syndrome Congress, and I sat at

the kitchen table and cried for about 30 mintues...I was so mad that they had

sent me a letter...it felt like a mean reminder that my daughter was different,

and I was MAD!  I can laugh about it now, but I was really upset at the time.

 

Now that she is 10, she can be a smart mouthed little twerp...and I think to

myself, what the heck was I thinking teaching her how to talk????  One time,

she asked me if she could have a baked potato, and I told her no.  About 20

minutes later, I could smell a baked potato and I realized she has put one in

the microwave and cooked it herself.  Now, I was SO HAPPY that she had figured

out how to make that potato, but she got into trouble for not listening.  But

don't think for one minute I wasn't doing a secret happy dance!

 

So, yes, there is joy.  Sometimes you have to look hard to find it.  I agree

with another poster, I look for the good things, even in a bad situation.  My

worst fear is am I doing enough for ?  Am I missing something?  Could I

be doing more for her?  I have seen people stare at her and I have had her

called a retard to my face...those moments are horrific.  But those moments

make me a better mom.

 

I also want you to know that I suffer from major depression, and even though I

am in treatment, there are times when I am overwhelmed with 's

diagnosis...and have felt the way you do.  I have felt guilty for feeling upset

or mad that she has Ds.  It's not fair!  But those are my issues, not

's.  I am only 10 years in and I learn new things ALL THE TIME!  I have a

family member who has adopted 4 children.  One of them, when he was born, had

some issues with his bottom; his little anus was not where it was supposed to be

and my cousin was terrified...I remember her mother saying to her " are you sure

you want to adopt a child with special needs? " ...I was floored, and I called her

and told her, you know what?  Things can be so much worse...I've seen lots of

different disabilities in my 10 years as 's mom and I'll take Down syndrome

any day.

 

If you need someone to talk to about feeling guilty, let me know.  I

understand, I have been there.  Make sure you are taking care of yourself, too!

Graham

Kay Independent Sr. Beauty Consultant

832-816-7992

www.marykay.com/jendmoyers

________________________________

From: gratitudehomeschool <gratitudehomeschool@...>

Sent: Wednesday, January 11, 2012 12:09 PM

Subject: Do you have Joy raising your DS child?

 

Do you have Joy raising your DS child? Have you had it from the beginning? Did

it take awhile to come; if so how long? If you don't have it, do you feel

guilty for not having it (I do)?

I have had so much JOY raising my first three children.

I have had little, to no Joy, raising my youngest with DS. The start of life

with heart surgeries, and knowing that her heart still isn't right, etc. hasn't

helped. There has been a lot of sorrow surrounding her. She is monitored,

every 6 months, for the moment when congestive heart failure returns. It isn't

just the surgeries though. There are many very difficult parts of life that I

am able to deal with on an emotional level; disabilities isn't one of them. It

has always been my greatest challenge emotionally.

So if you have joy, would you care to share when it came about and how you found

it with the challenges of DS.

God Bless.

In Christ,

Carin

[Guest guest]

Carin, I want to let you know that whatever you are feeling is OK. You have 4

children under 10 and that is tough without the extra challenges associated with

DS. I went through serious post-partum depression after my 2 nd typical child

and NEVER fully recovered. I have been taking anti- depressants since. When Sam

was born, we did not know he had DS. I did not have the triple screen or amnio.

My husband was devastated by the heart issues but that served to help him

overcome HIS fear.

Sam brings us joy. In the form of laughter, hamming it up fir the camera and

always surprising us with his cleverness. He spoke early, but preferred to point

and sign. He did not walk until after his 3rd birthday and at 6 it is still a

challenge to walk more than 20 yards with him. He steals my iPhone and plays you

tube videos, he want an iPad (to play games) and hates to stop playing to do

anything else like go to school. It took a very long time to meet many

milestones but it is fascinating to actually SEE a person learning step by step.

First you must forgive yourself, stop beating up on yourself and know that you

need to grieve for the life you expected for this child. That is normal. It is

also normal to look at other kids your child's age and feel a twang of sadness.

Sorry this is so long , we all understand where you coming from.

If you would like to talk sometime you may call me. I live Oregon, USA.

I will private message you my phone number.

Barb Rizk, mom to (14),(12) and Sam(6ds).

Sent from my iPhone

Barb Rizk

On Jan 11, 2012, at 10:09 AM, " gratitudehomeschool "

<gratitudehomeschool@...> wrote:

> Do you have Joy raising your DS child? Have you had it from the beginning?

Did it take awhile to come; if so how long? If you don't have it, do you feel

guilty for not having it (I do)?

>

> I have had so much JOY raising my first three children.

> I have had little, to no Joy, raising my youngest with DS. The start of life

with heart surgeries, and knowing that her heart still isn't right, etc. hasn't

helped. There has been a lot of sorrow surrounding her. She is monitored, every

6 months, for the moment when congestive heart failure returns. It isn't just

the surgeries though. There are many very difficult parts of life that I am able

to deal with on an emotional level; disabilities isn't one of them. It has

always been my greatest challenge emotionally.

>

> So if you have joy, would you care to share when it came about and how you

found it with the challenges of DS.

>

> God Bless.

>

> In Christ,

> Carin

>

>

[Guest guest]

First off I want to say upfront that how you are feeling is OK. Everyone is

different, everyone deals differently. None of us are here to judge. You

did ask a question and I want to answer it but I don't want *my* answer

with *my* life to make you feel like I am judging or that I, in any way,

think you should feel the same. I am totally passionate about and

honestly I feel that she is THE best thing to ever have happened to me. :-)

When was born, my oldest of 6 was 18 and had just started

college, my youngest was 5. We were a homeschooling family. was

born with 2 major heart defects - tetrology of Fallot and AVcanal. They

gave her a 50/50 chance of survival til she was big enough for her repair.

We had to keep our kids home and away from ALL their friends for til she

was 10 months old and had her repair. To say her medical issues were an

upheaval is a vast understatement. I would go to the Dr and not come home

for an entire week. We were rushed out of here at a moments notice and life

flighted more than a few times.. .I have been on the chopper twice, she, 4

times. She 'died' in my arms here at home in front of all my kids. I was

totally unable to dial 911. At the moment, when I thought she was gone, I

fell into the deepest darkest hole imaginable. I decided then and there

that she was going no where.... and I started begging her to stay and that

God would let her stay.

From that moment forward I realized what a precious gift I had and that I

had better enjoy it cause at any moment it could be taken from me. And

still could. She is repaired but her combo has caused kids to simply die in

their sleep or drop over due to faulty electrical issues caused by her

repair. That is never far from my mind. She is also supposed to be needing

a new pulmonary valve- sometime! She has avoided that one so far and they

tell me it's because she is in such great shape. ( I don't let her sit much

I keep her up and active)

It has been a very long road medically. She has had so many battles I do

not want to take the time to write them all or even to relive them! You

would NEVER know it by looking at now that she has come so close to death

so many times!! We still have our rocky moments with those things, but

NOTHING like it was.

So now to the part I WANT to tell you!! This little girl IS pure JOY.

Everywhere she goes, she leaves people smiling. I always joke that her goal

in life in life is to say HI to every single human being on the planet

because no matter where we go she makes fast friends. She has a knack for

picking the most dejected needy person and making them smile. I can not

tell you how many trips to the grocery store have ended with me in tears

with witnessing her kindness and the way she spreads joy to others.

Her love of life and people is totally contagious. You can NOT be depressed

in her presence. She simply will not have it.

This is not to say that there have not been challenges..... and we are

about to enter the teen years that bring with it a whole new set of

challenges. But I have come to LOVE learning this new things. I LOVED

teaching her to read.... I do love to teach, hence the homeschooling , and

she is by far THE most rewarding kid to teach! When she gets it... oh my

gosh, that joy is beyond all the struggles to get there.

I think in order to have joy, I had to let go of what *I* wanted, what *I*

envisioned that 'perfect' child to be, what *I* thought should be happening

etc and instead concentrate on what SHE was doing, not what she was not. I

taught myself how to teach her and proceeded to teach her the next thing.

We all do not baby her. If she is a brat ( and trust me, she is TOTALLY

capable, not only that, but she can trick every adult into getting them to

let her off the hook or to do things FOR her. She is so blasted smart that

way) we punish her. We do not let her get away with anything that the other

kids were not allowed to get away with. Her sibs tease her, they yell at

her when she gets in their room, they also love and encourage her. Take her

with them when they do things. In short, she is given the same treatment as

anyone else. They DO NOT help her a lot. They will walk right past her if

she if she is sitting there begging them to do something for her. OTH- if

she truly needs help though, they are the first to come to her aide.

I think the hardest thing has been to get people to allow her to stand on

her own and not be stepping in o to help, or let her get away with stuff.

Perfect example- she is on a typical cheer team and they were cheering for

a football game. I had no cash and I really did not want her eating candy,

but she was INSISTENT that she go buy some at the concession stand...I am

thinking great life lesson here and let her march her little self up there,

wait in line knowing that when she got there and had NO MONEY they would

turn her away... ( remember we are entering the teen years and we know how

well teens listen to parents) well.. WRONG!!! Everyone in town knows her

and guess what.. THEY GAVE HER THE BLASTED CANDY! LOL I know they think

they are being kind, but in all honesty, letting her get her own way all

the time is bad, very bad., And I know it's hard esp when the poor kid HAS

had a lot of pain and suffering with her medical issues. But it will make

for a child who is impossible to live with who is a spoiled brat who always

think they should get their way.

We travel a lot and I am always trying to get her to pack her stuff and not

try to carry everything with her on the plane etc.... cause guess who ends

up taking care of it or carrying it somehow?? me. So lately I have been

letting her drag her own stuff and trying to manage her over stuffed

suitcases etc so she understands what a pain it is. I will walk a bit a

head of her only to turn around and find that she has talked some perfect

stranger into happily helping her. :-) I have to say, that you really can't

help but laugh at the charmed life the kid lives at times like that. The

flippen world is her oyster and she has total command over it. I can't help

but stand in awe of her and that does bring me joy.

I don't know if any of this rambling has helped or made things worse or

simply is....

Here are some youtubes of her if care to check out how healthy a really,

really sick kid can turn out to be. I am also on facebook where I do a

much better job of keeping people updated.

I need to put some new ones up- like her SOLO cheer performance that left

everyone in tears... but this is my FAVORITE video... just came home from

shopping and she bought this Hannah costume and my son, was putting the

music on for her, just cause he knows she loved it.. and my gosh, she just

broke out in this spontaneous dance which he caught on video!!

http://www.youtube.com/watch?v=7-PMdY2AWco & feature=g-upl & context=G25ad0b3AUAAAAA\

AAIAA

talk about joy!!! Not only just her, but my son's joy in watching and

catching in on video....

Carol

Mom to , 10!!!!

*Club Layton* <http://clublayton.blogspot.com/>

Where games are played, and friends are made!

*A big THANK you to :*

Layton Athletics <http://laytonathletics.com/>

5402 Austin Court

Ringwood, IL 60072-9404

(815) 728-9700

*for their generous *donation* of their building for our activities!!*

On Wed, Jan 11, 2012 at 12:09 PM, gratitudehomeschool <

gratitudehomeschool@...> wrote:

> **

>

>

> Do you have Joy raising your DS child? Have you had it from the beginning?

> Did it take awhile to come; if so how long? If you don't have it, do you

> feel guilty for not having it (I do)?

>

> I have had so much JOY raising my first three children.

> I have had little, to no Joy, raising my youngest with DS. The start of

> life with heart surgeries, and knowing that her heart still isn't right,

> etc. hasn't helped. There has been a lot of sorrow surrounding her. She is

> monitored, every 6 months, for the moment when congestive heart failure

> returns. It isn't just the surgeries though. There are many very difficult

> parts of life that I am able to deal with on an emotional level;

> disabilities isn't one of them. It has always been my greatest challenge

> emotionally.

>

> So if you have joy, would you care to share when it came about and how you

> found it with the challenges of DS.

>

> God Bless.

>

> In Christ,

> Carin

>

>

>

[Guest guest]

That is pure joy!

Getting my girl out the door to school on time is a daily chore - I am not

kidding. I asked her 3 or 4 times to meet me in the bathroom in order to get her

teeth brushed. I finally found her picking out a different shirt to wear than

the one we already agreed on. I fussed it at her and started moving her toward

the bathroom, at which point she said, " Was my idea a bad idea? " I, too, had

to laugh...and get over my previous frustration.

Eleanor

On Jan 11, 2012, at 5:35 PM, kindafunny@... wrote:

> Yesterday I walked out of the doctor's office in tears... Hannah was in for

> another anti-biotic and I was filling out a mile high stack of forms

> because we just moved and this was the first time at the new doc. As I FINALLY

> finished the last signature and said, " well, THAT'S done. " Hannah followed

> up with a quick " You did it?? You SOLVED it?? You are a clever, clever

> woman. "

>

> I almost peed myself.

>

> Yes, there will be joy.

>

> Connie

>

>

> In a message dated 1/11/2012 1:09:23 P.M. Eastern Standard Time,

> gratitudehomeschool@... writes:

>

> Do you have Joy raising your DS child? Have you had it from the

> beginning? Did it take awhile to come; if so how long? If you don't have it,

do

> you feel guilty for not having it (I do)?

>

> I have had so much JOY raising my first three children.

> I have had little, to no Joy, raising my youngest with DS. The start of

> life with heart surgeries, and knowing that her heart still isn't right,

> etc. hasn't helped. There has been a lot of sorrow surrounding her. She is

> monitored, every 6 months, for the moment when congestive heart failure

> returns. It isn't just the surgeries though. There are many very difficult

> parts of life that I am able to deal with on an emotional level; disabilities

> isn't one of them. It has always been my greatest challenge emotionally.

>

> So if you have joy, would you care to share when it came about and how you

> found it with the challenges of DS.

>

> God Bless.

>

> In Christ,

> Carin

>

>

[Guest guest]

I want to piggy back a little bit off of 's lovely words.

A few weeks ago I drove to high school. (We are having a little trouble

with a couple of kids who aren't crazy about my fabulous kid - OMGOSH) Anyway, I

get out of the car to walk her in and notice 6 or 8 boys, dressed rather

slovenly, eyeing her. They are walking away from the school, down a small hill

toward the area we always called " the smoke hole. " I presume they're heading off

for a last cig before school starts. I move my body to be closer to her in case

I need to shield her from some ugly thing one of them might yell out.

looks over to where they're walking and cheerfully yells, " Hi skippers! " (She

thinks they're skipping school - and is probably right.) The boys grin at her

and all wave and yell, " Hi . " My heart just about exploded. I was so

tickled. And it made me look at my own attitude....

Eleanor

On Jan 11, 2012, at 11:47 PM, Moyers wrote:

> This may end up long...

>

> When I was pregnant with my first child, I remember being terrified of the

" triple screen " testing, Down syndrome to be exact. I didn't even know anything

about Ds, but I was afraid of it. I passed the test and my child was born

normal.

> Second child, same thing. I was so nervous about that dang test, but I passed

it and he was born perfectly fine.

> , her pregnancy was a little bit harder, so when I took and passed that

test, I literally thought to myself, Whew, I'll never have to take that test

again and worry about Down syndrome. And what do you know? She was born with

Down syndrome. God is funny like that.

>

> It took me 3 weeks to even say Down syndrome. All I knew was that a person

with Ds only lived to be 30 and they were very mentally challenged. Actually, I

knew NOTHING, but this is what I thought for those first 3 weeks. was not

born with any health issues, except a blocked tear duct. Once the shock wore

off, I started researching and learning about Ds. The first time we went to

sign papers for to receive therapy, the woman there told me I could put

her in an institution...it was 2001!! I was floored and told her she couldn't

have my baby. And that's when it hit me, she was my BABY first. I decided

right then that I was going to treat her like I would if she didn't have Ds...I

was going to raise her the same way I was raising her brothers.

>

> I cried alot of tears. Not all tears of sadness, though. is a

beautiful little girl and she made me reach inside myself, way deep inside, into

places I didn't even know existed. She made me laugh, she tried really hard

(most of the time) and she depended on me, more so than her brothers. I

remember I got a letter from the National Down syndrome Congress, and I sat at

the kitchen table and cried for about 30 mintues...I was so mad that they had

sent me a letter...it felt like a mean reminder that my daughter was different,

and I was MAD! I can laugh about it now, but I was really upset at the time.

>

> Now that she is 10, she can be a smart mouthed little twerp...and I think to

myself, what the heck was I thinking teaching her how to talk???? One time, she

asked me if she could have a baked potato, and I told her no. About 20 minutes

later, I could smell a baked potato and I realized she has put one in the

microwave and cooked it herself. Now, I was SO HAPPY that she had figured out

how to make that potato, but she got into trouble for not listening. But don't

think for one minute I wasn't doing a secret happy dance!

>

> So, yes, there is joy. Sometimes you have to look hard to find it. I agree

with another poster, I look for the good things, even in a bad situation. My

worst fear is am I doing enough for ? Am I missing something? Could I be

doing more for her? I have seen people stare at her and I have had her called a

retard to my face...those moments are horrific. But those moments make me a

better mom.

>

> I also want you to know that I suffer from major depression, and even though I

am in treatment, there are times when I am overwhelmed with 's

diagnosis...and have felt the way you do. I have felt guilty for feeling upset

or mad that she has Ds. It's not fair! But those are my issues, not 's.

I am only 10 years in and I learn new things ALL THE TIME! I have a family

member who has adopted 4 children. One of them, when he was born, had some

issues with his bottom; his little anus was not where it was supposed to be and

my cousin was terrified...I remember her mother saying to her " are you sure you

want to adopt a child with special needs? " ...I was floored, and I called her and

told her, you know what? Things can be so much worse...I've seen lots of

different disabilities in my 10 years as 's mom and I'll take Down syndrome

any day.

>

> If you need someone to talk to about feeling guilty, let me know. I

understand, I have been there. Make sure you are taking care of yourself, too!

>

> Graham

> Kay Independent Sr. Beauty Consultant

> 832-816-7992

> www.marykay.com/jendmoyers

>

>

> ________________________________

> From: gratitudehomeschool <gratitudehomeschool@...>

>

> Sent: Wednesday, January 11, 2012 12:09 PM

> Subject: Do you have Joy raising your DS child?

>

>

>

>

> Do you have Joy raising your DS child? Have you had it from the beginning? Did

it take awhile to come; if so how long? If you don't have it, do you feel guilty

for not having it (I do)?

>

> I have had so much JOY raising my first three children.

> I have had little, to no Joy, raising my youngest with DS. The start of life

with heart surgeries, and knowing that her heart still isn't right, etc. hasn't

helped. There has been a lot of sorrow surrounding her. She is monitored, every

6 months, for the moment when congestive heart failure returns. It isn't just

the surgeries though. There are many very difficult parts of life that I am able

to deal with on an emotional level; disabilities isn't one of them. It has

always been my greatest challenge emotionally.

>

> So if you have joy, would you care to share when it came about and how you

found it with the challenges of DS.

>

> God Bless.

>

> In Christ,

> Carin

>

>