Re: Emotions

[Guest guest]

Dear Deborah:

I think all of us have had those feelings before. I especially had them when I

was pregnant and hadn't met Ben yet. It is still pretty early to worry so much

about speech delay. That sign language is a tool so don't be afraid that if he

uses it he will have problems. The main thing I am concerned with right now is

making sure Ben is hearing properly. We have been checking tympanograms and his

have been flat. He is scheduled for tubes on Monday.

Keep the faith, it is hard and sometimes we prepare ourselves for the worst and

hope for the best. You will be amazed at the things you child will do.

Good luck.

Thanks for the tip on the thickened liquids, I'll try it. We are at that stage

now.

Carol

Mom to Ben 14mos and 4 siblings

[Guest guest]

Her father describes her as " nothing short of a miracle. " His

> expectations for her? " I never allowed myself expectations, "

>he

> says, " but I also never had limitations, and I think that is

>key. I

> felt there was no limit on what she could accomplish. " Her

> greatest achievement? " Who she is. "

>

> " My goal is to change the way people think

>about us, " she

> says. " I do have special needs, but I have special

>abilities. I

> just want to be seen as who I am. "

Thanks to Dan for the wonderful article.

Deborah,

As I read your words, I could definitely sense the intensity of your

emotions. And like everyone else who has responded, I have also had them. I

feel very fortunate to be able to say that my own " grieving period " was

brief although there are times when I revisit the feelings,like when Maggie

started preschool and would just sort of watch the other children instead of

jumping in and playing like the others. (She's doing great now!) For a long

time, I would sometimes look at Maggie and the words " down syndrome " would

flash in my mind.

I think that it is really important to allow ourselves to experience

these emotions and not beat ourselves up for having them, but at the same

time be on guard against self-pity which sort of pulls us in and prevents us

from moving to a point where we accept our children's diagnosis and

celebrate them for being who, what and how they are.

Reading Dan's article reminded me of some of the things that I focus on

to keep things in perspective for me, especially the 2 parts that I clipped.

I also thought about what you're going through with Shane and the video. I

was thinking how lucky our kids are to have the opportunity to learn sign

language compared to someone like myself who tried, but never could learn

French or Spanish or sign language either. If you stop to think about it,

like Ashely says, our kids have " special abilities " as a result of and

independent of their " disabilities. " I find it works for me to focus on this

aspect of D.S. and to see it as an opportunity rather than a handicap. This

is pretty hard, though, because society constantly bombards us with

unrealistic notions of perfection and devalues the rest of us, especially

our children, who don't measure up.>

> Another thing that kind of puts things in perspective is something

>that I read in on this list back in December. It was a story about 2

>children who were born early in the last century-- one was born with D.S.

>and the other was born " normal and healthy. " The latter children grew up to

>be Adolf Hitler. For me, the point, is that the future is an unknown for

>all children, even those who appear to have a lot going for them. Having a

>child with D.S. keeps us in touch with that reality. As parents, I believe

>that we have to do our best to love and teach our children. Beyond that, we

>must hope and trust powers greater than ourselves.

Gosh, I've probably said way to much and I hope I haven't said the

wrong thing, but I feel really passionate about this. Take care and God

Bless you and your family.

Carla Duffy

MO Maggie 3 3/4 (mds)

______________________________________________________

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[Guest guest]

Deborah -

Since is only 13 months I can not say if it ever goes away, but I can

say I have cried more in the last 11 months (she was diagnosed at 2 months)

than I have ever in my life. I cry for the hardships ahead, I cry for the

ignorance that she will have to suffer through, I cry for her future - Will

she be happy? Will she be a contributing member of society or need to be

taken care of all her life? Will she marry? Will she have children? Will

there be the technology to allow her to have " normal " children or will she

need donor eggs or will she want to have children with DS or MDS? So many

unknowns - I think I cry more for the unknowns than anything else.

However I have a beautiful daughter and the ability to focus on the good in

her life. I am lucky that I have tunnel vision, I can concentrate on the

day to day and all the wonderful things that happen every day. I can take

any little sign and see it as a ray of hope that she will have very mild

mds. I have to not think about the big picture - because when I do - I lose

it. Maybe when it is clear how much she will be affected (in 6 to 10 years)

I will be able to deal with it better. But I think by then you and I will

know what wonderful people Shane and are and we will have learned to

deal with heartbreaks and hardships. For now just concentrate on the

hopeful.

That is what is wonderful about this list - it gives me hope - there are

children who are mild and those who are severe but all the children are

dealing with MDS and thriving.

Darlene - Mom to (13 months MDS) and 3

Emotions

I don't post here too often, but read all the time.

I appreciate so much the encouraging words from

everyone, and am grateful for the insight from those

who have older children, since my Shane is just

8 months old. It helps to know things we might

be experiencing in the future.

But I want to ask something to see if its just me,

or if anyone else experiences this.

Shane hasn't started with a speech therapist yet

(should be within the next month or so), but one

of my other therapists recently gave me a tape to

watch about total communication -- speaking the words

along with a form of signing. I was OK watching

it when the narrator was just talking about it,

but when it came to the part where the narrator

was actually sitting with a young child with Downs

and talking/signing with them, and showing the

child how to sign, I just burst into tears. I

ended up turning the tape off, and I haven't looked

at it since. I think seeing it in action really

touched my heart. I felt sorry for the little girl on

the tape, I felt sorry for my son that he'll

have to go through that to communicate, and I

felt sorry for myself to have to learn it. Hope

that doesn't make me sound too bad.

Then at church on Sunday, a man and his 10 year

old son who has Downs sang a duet together, and

I cried through that too.

Sometimes I can just look down into my precious

little boy's face and cry -- for the hardships

he has ahead for him, for the unkind way other

children might treat him......

I tend to be an emotional person, but I was

wondering if this type of thing happens to anyone

else, and if it does, does it ever go away ??

Sorry this was so long....

- Deborah (mommy to Logan, 2.5 and and Shane, 8 months)

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Won't you please consider adding your personal story on the MDS website

today? http://www.mosaicdownsyndrome.com And please don't forget to check

the message board frequently...it's a great way to meet others who are

affected by MDS, who are not on our mailing list!

http://www.insidetheweb.com/mbs.cgi/mb778401

[Guest guest]

Dear Deborah,

I am soo glad you wrote. When my daughter was first

born and I was still in the maternity ward, I was taking a shower and I just

burst out and cried like I've never cried before. I asked God why over and

over again. My husband had left to get some things from home and I felt so

alone. After I woke up the next morning I went to the mirror in the

bathroom and I could have swore I had Downs! My brain was really playing

tricks on me. I asked my husband If I looked liked I had Downs and he

reasured me over and over that I didn't. I really thought I did. After we

took our daughter home, There was a grieving time of the loss of a perfect

child yet it was bittersweet because we gained a little girl. The emotions

ran the gammet and for months and months it was an emotional roller coaster.

There were extreme highs stemming from her accomplishments coupled with

extreme lows from the delays of those accomplishments. Emotions are a very

tricky thing, but you have to let youself feel them and also work through

them. I had long talks with God and my husband. I realized That my emtions

were normal and that many other people who had had children with Downs had

faced the same emotions. One time I visited a friend who had just had a

daughter who had Downs and I asked her if she went through any grieving, she

said well no, not until I was sitting on my living room couch and I was

looking at a jack-o-lantern face on a pumpkin, and then I just burst out

into tears! That triggered something in her. People feel different emotions

at different times.

Now that my daughter is 8 years old, It's not so bad

in the emotions department. The only time I feel sad is when there are alot

of stresses going on. It doesn't even have to do anything with her. I know

that way down deep, I'll always feel sad , BUT, There have been so many

joys! Life is a real adventure when you have a child who has Downs! Their

accomplishments are not just a big deal, they are a party! My daughter is in

regular 2nd grade. She loves going to jazz class after school on Mondays.

She has normal friends in the neighborhood to play with. Life is more normal

than not. Please remember this; give your child every opportunity to do the

normal and fun things in life.Never say she " can't " until she proves that

she can't. Bekah has suprized us so much! Also do everything you can right

now to increase those neural synaptic connections. The more stimulation the

better! When Bekah was three mos. old, I went to home Depot and bought those

self adhesive mirrors and filled up a bottom corner of her room. Bought a

mat, a big big rubber ball, fun learning things and decorated the walls in

posters and the alphabet. We spent an hour a day in there having fun and

learning! Make your child your project ( as all of mine are) Expect htose

emotions every now and then, it's OK and perfectly normal to stuggle. I

still do. My husband says It's made me more sensitive to others and their

struggles. I'm not as judgemental. That's a good thing. And their are alot

of good things to look forward to with your child! Feel free to write again.

Sincerely,

Ellen Maulding

Emotions

>

>

> I don't post here too often, but read all the time.

> I appreciate so much the encouraging words from

> everyone, and am grateful for the insight from those

> who have older children, since my Shane is just

> 8 months old. It helps to know things we might

> be experiencing in the future.

>

> But I want to ask something to see if its just me,

> or if anyone else experiences this.

>

> Shane hasn't started with a speech therapist yet

> (should be within the next month or so), but one

> of my other therapists recently gave me a tape to

> watch about total communication -- speaking the words

> along with a form of signing. I was OK watching

> it when the narrator was just talking about it,

> but when it came to the part where the narrator

> was actually sitting with a young child with Downs

> and talking/signing with them, and showing the

> child how to sign, I just burst into tears. I

> ended up turning the tape off, and I haven't looked

> at it since. I think seeing it in action really

> touched my heart. I felt sorry for the little girl on

> the tape, I felt sorry for my son that he'll

> have to go through that to communicate, and I

> felt sorry for myself to have to learn it. Hope

> that doesn't make me sound too bad.

>

> Then at church on Sunday, a man and his 10 year

> old son who has Downs sang a duet together, and

> I cried through that too.

>

> Sometimes I can just look down into my precious

> little boy's face and cry -- for the hardships

> he has ahead for him, for the unkind way other

> children might treat him......

>

> I tend to be an emotional person, but I was

> wondering if this type of thing happens to anyone

> else, and if it does, does it ever go away ??

>

> Sorry this was so long....

>

> - Deborah (mommy to Logan, 2.5 and and Shane, 8 months)

>

>

>

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

> GET A NEXTCARD VISA, in 30 seconds! Get rates

> as low as 0.0% Intro APR and no hidden fees.

> Apply NOW!

> http://click./1/975/1/_/581564/_/953062801/

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

>

> Won't you please consider adding your personal story on the MDS website

today? http://www.mosaicdownsyndrome.com And please don't forget to check

the message board frequently...it's a great way to meet others who are

affected by MDS, who are not on our mailing list!

http://www.insidetheweb.com/mbs.cgi/mb778401

[Guest guest]

Deborah,

I recently sat in a crowded restaraunt down the street from my office

bawling like a small child. I was reading an article from the Boston Globe

called " an everyday courage " about Wolfe, a young woman from the

Boston area with Down syndrome. I eventually had to put the article away so

that I could stop crying. The article describes how she and her parents

never accepted the limitations people commonly assume come with DS. She

always worked as hard as she could and never let her disability slow her

down. She graduated high school, made the honor role multiple times, was

the only student with special needs ever selected to speak to the

graduating class, she received a standing ovation from her classmates when

she finished her speach (oh no... here I go again....). She went on to be

accepted to a special program at a college here in the Boston area

(special, but challenging), she lives by herself, and when she visits her

parents back in CT she always travels alone by bus. She works part time in

a clerical position at a prestigious hospital and she also works as an

actress - she recently appeared on an NBC show. Her story is extremely

inspiring and shows that our kids, with a lot of hard work and

encouragement, can do amazing things. I completely understand your feelings

about signing - but hang in there! It's a stepping stone - you will see

that Shane will be talking in no time. I have also found it to be very

gratifying to see Luca learning some signs and to see his satisfaction in

being able to communicate with us. So, bottom line, I cry all the time :-).

As Luca has grown though (he's three now) I have gotten to a much better,

and more positive place. While there will be people who may be hurtful,

you will discover that many more people are extremely kind and will enjoy

your child almost as much as you do. Really! I am not just saying that.

Luca, unlike most kids with Mosaic DS, has some pretty pronounced delays.

Yet he is loved by so many people and has a very happy life so far (we are

taking it a day at a time :-)). Most kids with Mosaic DS do just fine. I

can only speak from my experience but things definitely get better!

a big hug to your kids,

Dan

father to Luca, 3 Mosaic Translocation DS/PDD, and Sofia, 4 months

PS - I would provide a link to the article on the boston.com site but since

it was from last week they charge a fee for viewing it (I wrote and

complained!)

[Guest guest]

I splurged. I hope you enjoy this (Kleenex recommended)

AN EVERYDAY COURAGE

DESPITE BATTLES PHYSICAL

AND EMOTIONAL, 21-YEAR-OLD

ASHLEY WOLFE REMAINS

IRREPRESSIBLE

Author: By Bella English, GLOBE CORRESPONDENT

Date: 03/09/2000 Page: F1 Section: Living

SOMERVILLE - She received a standing ovation when she

spoke at her high school graduation. She's currently in her

third year at Lesley College in Cambridge. She recently played

a role in the NBC drama, " Third Watch. " Two afternoons a

week, she volunteers at Massachusetts Eye and Ear Infirmary.

She has a new job at Harvard's Fogg Art Museum. She also

has Down syndrome.

When Wolfe was born 21 years ago, her parents knew

at once something was wrong, though " wrong " is not the word

they would choose. and Stanton Wolfe consider their

daughter pretty perfect the way she is. " She just has a little

extra chromosome, " her mother says.

And that is how Wolfe has tried to live her life: putting

that extra chromosome in its place. " Having Down syndrome

is just one little part of me, " she says. On a recent day, she

looks pretty much like any other young person: wearing jeans,

a red shirt, gold star earrings, pouring a cup of tea for a

visitor

in the Union Square apartment she shares with two other

students.

Yes, there are the vision problems, the speech that will slur if

her vigilant attention to enunciation drifts, the gait problems

that come from having one leg shorter than the other, the social

problems that dog those with Down syndrome. But she wants

people to know there's more to her than a medical diagnosis.

" Back in the early ages, " she says, " people with Downs were

called mongoloids and they would institutionalize them. My

parents really wanted me to be mainstreamed. I'm glad. "

It was in the recovery room that the Wolfes learned for certain

their newborn had Down syndrome, a genetic condition that

causes multiple problems, including mental retardation, and

occurs in one of every 800-1,000 live births.

The pediatrician arrived just after and said two things

the Wolfes will never forget: " She's beautiful, " and " Her heart's

perfect. " Many Down babies have serious heart defects. For

's good heart, her parents were grateful.

But there were other folks whose comments cut deeply. " Are

you taking her home? " was a question the parents heard often

those first several hours.

There was never any doubt that would be well loved

and supported. From the start, the Wolfes wanted her to be

mainstreamed, which meant that she was in many regular

classes, where she had her own aide. For other subjects, she

went to the resource room, which offered smaller classes for

slower learners. By the time she graduated from Simsbury

High School outside Hartford, she had made the honor roll

seven times. She had even taken Spanish.

" I had to work extremely hard to do that, " says . " My

parents made me study extremely hard. "

A powerful message

But her crowning achievement thus far came on graduation

night in June 1997. She stood at the podium before 3,000

people and delivered a powerful message of hope called

" Opening Eyes, Opening Minds. " She and several other

students had auditioned in front of a faculty committee; only

three were chosen. " I wrote it, " says , " but I had help

from my parents and speech therapist. "

Principal Dennis Carrithers remembers the speech well. " It was

one of the most beautiful things I've ever seen at any school, "

he says. " She spoke about the things she learned here, the

people who mattered to her. When she finished, people were

on their feet, wiping away tears.

" She's a really strong lesson that we never want to set limits on

people, " Carrithers says, " because we have these wonderful

surprises like . "

That's not to say life has been easy. " It's been a very big

struggle for both me and my parents, " says, sitting at

her kitchen table, her appointment book in front of her. She is

proud of the fact that she is organized, right down to a list of

questions to ask the reporter. ( " When will the story run? What

section? " ) " I have to write everything down, " she says, " or I

might not remember. "

The social issues have been as painful as the physical ones.

" People said, `Does she have potential? Is there a future for

her?' " she recalls. " In school, labels are put on. `Oh, you're a

special ed student.' The normal kids didn't want to be around

us. I had very few friends. "

It's not that other children overtly teased , her mother

says, but neither did they seek her out. " We joined the

Brownies and stuff like that, " Wolfe says, " but I think

she was always unsure of herself around kids her own age. "

When was 7, she underwent several operations for

dislocated hips and spent two years in a cast from her toes to

her waist. " I basically had to learn to walk again, " she says.

Years of physical and speech therapy followed.

When complimented on her speech, she smiles. " Thank you, "

she says. " It took a long time. Every once in a while, I do get

lazy with my speech. I'll have people tell me to please repeat

things. "

Obviously, Wolfe is on the high end of those with

Down syndrome. Her main cognitive problems are with math

and directions, and health issues remain. She is not able to

drive.

To help her with time - she has trouble with clock faces - her

parents bought her a digital watch. " She's always way early,

just to protect herself, " says Wolfe, an actress who

runs a summer arts program at Wesleyan University. Money is

another problem: she simply has difficulty handling it.

describes her limitations this way: " I have a very hard

time with integration. That basically means putting things

together, like walking into a situation and making sense of it. "

`Irrepressible spirit'

One of her mother's favorite pictures is of as a

3-year-old. " She had these long blond pigtails, an eye patch,

glasses and braces on her legs, and she was dancing around

the living room, " says Wolfe. " She has this irrepressible

spirit. Sometimes, she calls me up and cries. I just say, `No, it

isn't fair, Ash.' If you had told me three years ago that she

would be living on her own and balancing her checkbook I

wouldn't have believed it. She has continued to raise the bar

for us. "

Her father describes her as " nothing short of a miracle. " His

expectations for her? " I never allowed myself expectations, " he

says, " but I also never had limitations, and I think that is

key. I

felt there was no limit on what she could accomplish. " Her

greatest achievement? " Who she is. "

That has achieved so much is due in large part to her

family. Stan Wolfe is a facial surgeon who recently went back

to school and earned a master's degree in public health. He is

now oral health director, as well as supervisor of school and

primary health, for the Connecticut Department of Public

Health. Wolfe has worked with multiply-handicapped

kids in the theater. The couple were determined to give

the most normal life they could.

But perhaps their greatest gift was . " , " says

with a smile, " is wonderful. "

is the sister who arrived 3 1/2 years before . A

magna cum laude graduate of Harvard, also lives in

Somerville. One of her earliest memories is being told that her

very special sister had just been born. One of her best

memories is 's graduation speech. " It's one of those

things, " she says, " where you felt bad for the person who had

to go after her. "

" We are very close, " says. " I take the bus to her

house. "

`Shley' is what calls her younger sister. She is

unabashedly proud of her, and has always felt more a little

mother than a big sister. " There's a lot of sadness for me

around not ever having a normal sister relationship, " she

concedes. When she was in college, Wolfe wrote a

story for a student magazine called, " Hero Worship: How

Down Syndrome Challenged the Love Between Two Sisters. "

In it, she recounted the fierceness with which she protected her

sister - and the embarrassment she sometimes felt.

" I'd spent my elementary years terrified that someone would

make fun of me for . I hated myself for feeling even a

little ashamed of her, and dared them to try it, " she wrote. " I

will always have conflicting and confusing emotions of love,

admiration, frustration, and sadness for her. "

Today, Wolfe is the program coordinator for GEAR

UP - Gaining Early Awareness and Readiness for

Undergraduate Programs - which aims to increase the number

of Boston's poor minority youth who go on to college. She

majored in sociology with a focus on urban education and for

five years has taught in the Boston public schools. She has no

doubt that her save-the-world philosophy is due in large part to

.

Lifelong bond

" From a very early age, " she says, " I've been aware of people

who don't have as many choices as others. " Last year, she was

feeling itchy to leave Boston but decided against it. " is

the major reason, " she says. Her parents have never pushed

her to stay.

" It's been a godsend, " admits Wolfe, who visits her

daughters regularly. She adds: " We have never said to Becca,

`Take out to lunch, take to the movies.' In fact,

I have continually said to her, do not make your life plans

because of . That's our issue, not yours. "

But knows that her life will always be closely linked

to her sister's, and her parents know will always need

some support. " I think I will always feel a great deal of

responsibility for . " says. " And I want to be

around. "

Recently, has suffered from fibromyalgia, a painful

muscular-skeletal disorder, and gastro-intestinal problems.

has had to leave work early to take her for medical

appointments. If it's cold outside, she'll remind to dress

warmly. When felt ostracized by others at Lesley,

was furious, telling her sister, " they're a bunch of

idiots. " Boy advice? Wolfe laughs. " If anything, she

gives me advice. "

has endured the well-meaning but ignorant comments

of friends, such as: " People with Down syndrome are always

so happy and loving. " She likens

life with to a bed of roses. " There are lots of thorns,

lots of upkeep, lots of fertilizing, lots of water. But the roses

still bring a smile to your face. " If she were pregnant,

Wolfe would have the amniocentesis her mother never did. " I'd

want to have the knowledge ahead of time, " she says.

After some initial adjustment problems at Lesley, has

made friends and recently broke up with a boyfriend she met

there. He has multiple disabilities, but not Down syndrome. " It

was a bad match, " says. " He wasn't respecting my

needs. "

Last weekend, she was invited to a birthday party in Natick.

She and a friend - who is in a wheelchair - met at South Station

and went together. " It just blew my mind, " says her mother.

" They figured out the time, schedule, where to meet, where to

go, how much money they needed. "

The two-year certificate earned at Lesley is geared to

people with learning disabilities and other handicaps; she is

only the second Down syndrome student to enroll. She

graduated last May and is now taking part in a transition year

where students learn to live independently, paying their own

bills, cooking their own meals, getting around on their own. An

adviser checks on her and her roommates weekly.

" is verbally quite advanced but cognitively there are

limitations, " says Carol Noveck, coordinator of career services

for Threshold. " She is a wonderful and dynamic example of

what a person with a good self concept, with courage, with

support, with love can dream about. "

Love and hope

One of 's dreams came true recently when she snagged

a guest role on " Third Watch. " She played the part of a

15-year-old handicapped girl whose boyfriend is accused of

raping her. ( " But it was really consensual, " says). Her

mother, who models, acts and teaches drama, helped her get

the part and stayed on the set with her. , a gold medalist

swimmer in the Special Olympics, also gives speeches about

living with Down syndrome.

" My goal is to change the way people think about us, " she

says. " I do have special needs, but I have special abilities. I

just want to be seen as who I am. "

In a booklet she created while at Harvard, Wolfe

compiled photographs from 's life and helped her sister

put words to them. It is called, " A Different Kind of

Knowledge " and is dedicated: " For Shley-shley, who has the

courage to wake up every single day with the knowledge of the

constant challenges and frustrations she will have to face. And

who still gets out of bed. All the love a sister can give. "

At one point, wrote: " I am not too sure about the

future. I just do the best I can do. Maybe have a job, get

married, have kids. Because everyone has to work because we

need money and we need to find love and hope. "

On the last page, there is a picture of holding

tight. concluded: " I talked a lot about how painful it is

that I do have Down syndrome and all of the obsticles [sic]. I

try and not let them take over me. I just can't. "

[Guest guest]

Hi Deborah,

I have felt exactly the way you do when it comes to my daughter .

She is now almost 6 years old and while I don't cry as often as I did when

she was younger I still do cry. Your letter made me cry as did the replies.

Whenever I watch or read or see anyone with a handicap I can still cry.

I get very emotional over my daughter and every new challenge that comes her

way. I think the crying is good it helps me cope when we are faced with

something new. I think there will always be some challenge in her life and

everyday I pray for the strength to deal with whatever comes our way.

She is the sweetest most precious innocent child and I feel as though I have

to protect her yet I know the best thing is to let her experience as much as

I can and hope she will learn to cope and handle things when I am not around.

Take care,

Jeanne (Mom to Nicky 12, le 11, and 5)

[Guest guest]

Hi Dan,

Thank you for sending that story. I did need the kleenex. I just hope that

things get easier for our children in the future. That people will be more

accepting.

Jeanne

[Guest guest]

Dan: Thank you so much for " splurging " on the article! is well know

here in CT, and she spoke at last year's CT DS Congress convention, which,

of course, I missed! But, I heard she did a great job. The CDSC actually

gave her a scholarship for her continuing education, which was the first

time the CDSC had ever done that. Anyway, thanks again, it was a great

article----

Nathalie, mommy to (5 1/2), Naomi (MTDS, almost 3, in a week!), and

Anne (just turned 1 today!)

[Guest guest]

In a message dated 3/14/00 2:41:18 PM Eastern Standard Time,

d-meeter@... writes:

<< I was

wondering if this type of thing happens to anyone

else, and if it does, does it ever go away ?? >>

Hi Deborah:

I know there have been alot of posts regarding this issue and I agree with

what everyone has said. When I received the results of my amnio indicating

that had mds I cried like I've never cried before. I too wondered

if these devastingly painful feelings would ever go away and if I would ever

feel happy again. I can tell you from my experience that there may always be

times or situations that will trigger these feelings in you, but it gets

easier and easier to deal with them. Having the time to get to know your

child also makes it easier to put those feelings aside and to feel joy and

happiness.

While I was still pregnant with I watched an HBO special about the

experience of an 8 year old boy with down syndrome who was being included in

a regular ed. third grade class. After watching that show I fell apart. I

couldn't believe that my child was going to look like that, behave like that,

have all those problems and have to face all those challenges that young boy

had. Having lived with my daughter and seen all that she has accomplished in

6 years, if I saw that tape again today it would have no effect on me. Of

course, something else may come along that triggers those same feelings, but

I never feel the devastation I felt when I first started this journey of life

with an mds child.

Try to remember also that total communication is just a learning tool. It

doesn't mean that Shane will never speak. was taught to sign along

with the verbal word and children will drop the sign totally once they are

capable of communicating verbally. It's also pretty terrific to have a one

year old that can tell you what they want by signing!!

ann (Mom to , mds 6 yrs old and 10 yrs old)

[Guest guest]

Well put! Carla Duffy!

Re: Emotions

>

>

> Her father describes her as " nothing short of a miracle. " His

> > expectations for her? " I never allowed myself

expectations, "

> >he

> > says, " but I also never had limitations, and I think that

is

> >key. I

> > felt there was no limit on what she could accomplish. " Her

> > greatest achievement? " Who she is. "

> >

> > " My goal is to change the way people think

> >about us, " she

> > says. " I do have special needs, but I have special

> >abilities. I

> > just want to be seen as who I am. "

>

> Thanks to Dan for the wonderful article.

>

> Deborah,

> As I read your words, I could definitely sense the intensity of your

> emotions. And like everyone else who has responded, I have also had them.

I

> feel very fortunate to be able to say that my own " grieving period " was

> brief although there are times when I revisit the feelings,like when

Maggie

> started preschool and would just sort of watch the other children instead

of

> jumping in and playing like the others. (She's doing great now!) For a

long

> time, I would sometimes look at Maggie and the words " down syndrome " would

> flash in my mind.

> I think that it is really important to allow ourselves to experience

> these emotions and not beat ourselves up for having them, but at the same

> time be on guard against self-pity which sort of pulls us in and prevents

us

> from moving to a point where we accept our children's diagnosis and

> celebrate them for being who, what and how they are.

> Reading Dan's article reminded me of some of the things that I focus

on

> to keep things in perspective for me, especially the 2 parts that I

clipped.

> I also thought about what you're going through with Shane and the video. I

> was thinking how lucky our kids are to have the opportunity to learn sign

> language compared to someone like myself who tried, but never could learn

> French or Spanish or sign language either. If you stop to think about it,

> like Ashely says, our kids have " special abilities " as a result of and

> independent of their " disabilities. " I find it works for me to focus on

this

> aspect of D.S. and to see it as an opportunity rather than a handicap.

This

> is pretty hard, though, because society constantly bombards us with

> unrealistic notions of perfection and devalues the rest of us, especially

> our children, who don't measure up.>

> > Another thing that kind of puts things in perspective is something

> >that I read in on this list back in December. It was a story about 2

> >children who were born early in the last century-- one was born with D.S.

> >and the other was born " normal and healthy. " The latter children grew up

to

> >be Adolf Hitler. For me, the point, is that the future is an unknown for

> >all children, even those who appear to have a lot going for them. Having

a

> >child with D.S. keeps us in touch with that reality. As parents, I

believe

> >that we have to do our best to love and teach our children. Beyond that,

we

> >must hope and trust powers greater than ourselves.

> Gosh, I've probably said way to much and I hope I haven't said the

> wrong thing, but I feel really passionate about this. Take care and God

> Bless you and your family.

>

> Carla Duffy

> MO Maggie 3 3/4 (mds)

> ______________________________________________________

> Get Your Private, Free Email at http://www.hotmail.com

>

>

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

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

>

> Won't you please consider adding your personal story on the MDS website

today? http://www.mosaicdownsyndrome.com And please don't forget to check

the message board frequently...it's a great way to meet others who are

affected by MDS, who are not on our mailing list!

http://www.insidetheweb.com/mbs.cgi/mb778401

>

[Guest guest]

Dan:

I've noticed that too. (That people seemed to attracted to him). At first I

thought that I was imagining it, but I'am not it is true. And I believe they

love him almost as much as I do. Pretty neat!

Carol

Mom to Ben 14mos and sibs.

[Guest guest]

Bree:

Amen to this: <In my eyes and heart, she is no different than any other member

of my

family....believe me, there are traces of MDS in everyone in this household!>

Carol

Mom to Ben 14mos.and sibs

[Guest guest]

Dear Deborah,

I was touched by your letter and all those who responded to you. Like

you, I have been diligently reading the e-mails from our MDS " family " , but

not signing on lately. It just seems to me you might want to hear from

someone who has an older MDS child. Our Annie is almost 18 and a junior in

high school. She has brought much joy to our lives and she has developed

almost " normally " . Almost is the key word. Although it is wonderful to have

her exceed most people's expectations, she can't always live up to the

expectations of the " normal " world. Her biggest challenge is social

interaction. She has difficulty accessing social situations and knowing what

to say. All and all, she is a delight. She's very smart in some ways.

She's a whiz at math and memorization. She loves to write poetry. I thought

you might enjoy reading one of them. Bye for now.

(I found two poems I thought you might like)

WHO AM I?

" ME "

I am who I want to be

I love who I am

I want to be free

I am who I want to be

Free as the wind

That will never change

So free it knocks down everything in it's way

I want to be enlightened

Enlightened so much that new stars are formed

I want to be strong-willed

So strong that all other obstacles becomes sand

I want to be a child of God

So taken care of that fear becomes angelic

I want to be loved

So loved that my sprit rises above me and I'll still be alive

And no one can change who I am

[Guest guest]

Hi Deborah, and everyone else!

I'm so happy you wrote to the group.....there is so much support in this

group, this is almost worth crying over (happy tears)!

Before I continue, I just want to thank everyone who has shown so much

gratitude lately at having the website and this list. It's very difficult

for me to even rationalize why there was never more on MDS on the internet.

You all warm my heart tremendously, and I want to thank you, from the bottom

of my heart, for acknowledging my accomplishments! It really means a lot to

me! Just knowing that one more family out there has found us, through all

the support venues I have created, just makes my day!

I can feel lots of emotions in the air today, in the group. This is good!

Emotions can be very complex, and most of the time, we cannot even put a

name to them. This seems to make what we're feeling even worse at times.

I've learned that no matter what kind of emotion I'm feeling, I need to go

with the flow....even if it's anger. I have to deal with the emotion and

let it runs its course....this is how I will heal. We're all human, and we

all feel many different kinds of emotions, and it's o.k. to be angry, hurt,

frustrated, elated, sad, etc..., but what we do with them is what's

important.

I refuse to allow myself to go into tomorrow, no matter what. Today is

God's gift to me and what I do with today is my gift back to Him. I don't

need to go to tomorrow, because I know the God of my understanding is

already there. I live for today, one day at a time! I am fortunate enough

that I can stay home with and not have to go out of the home to work.

Why should I spend my precious and quality time with my beautiful daughter,

worrying about something that may never happen? This does not make sense to

me. Yes, I can prepare, but my energies lie in the now.

I know many of you are very concerned about what the future holds for your

child, and this is probably the most scariest part of the whole scenario.

Perhaps I am one of the luckier ones, where my daughter is less affected by

DS, and I have high hopes for her, just like I do with my other children.

In my eyes and heart, she is no different than any other member of my

family....believe me, there are traces of MDS in everyone in this household!

She is perfect, to me and to God. This is all that matters to me.

Yes, I do shed some heart-warming tears on occasion.....but they are happy

and positive tears, because I feel so blessed to have been given the

opportunity to raise this child by God. I hope I'm not sounding preachey

here, cause I'm not.......my spiritual connection to God is VERY strong, and

I don't feel any of the negative emotions that many of you do. Don't get me

wrong please, my world did come crashing in the day was born and my

doctor told me they were going to test her because they think she might have

DS. It was not 8 hours after her birth that all the negative vanished, and

I had the most glorious spiritual moment when they brought to me that

night, the day she was born. I've never felt anything negative since.

I think I've rambled enough here......not sure where I was planning on going

with all of this......I hope I haven't offended anyone, and if I did, I

sincerely apologize. Maybe I just needed to get this all out! Thanks for

listening.

Bree

Mommy to (2 days shy of 8 mos., mds) and 3 siblings

MosaicDS Listowner

National MDS List Facilitator

http://www.mosaicdownsyndrome.com

http://www.insidetheweb.com/mbs.cgi/mb778401 (MDS Message Board)

[Guest guest]

Dear Bree,

Well said and well recieved.

RE: Emotions

>

>

> Hi Deborah, and everyone else!

>

> I'm so happy you wrote to the group.....there is so much support in this

> group, this is almost worth crying over (happy tears)!

>

> Before I continue, I just want to thank everyone who has shown so much

> gratitude lately at having the website and this list. It's very difficult

> for me to even rationalize why there was never more on MDS on the

internet.

> You all warm my heart tremendously, and I want to thank you, from the

bottom

> of my heart, for acknowledging my accomplishments! It really means a lot

to

> me! Just knowing that one more family out there has found us, through all

> the support venues I have created, just makes my day!

>

> I can feel lots of emotions in the air today, in the group. This is good!

> Emotions can be very complex, and most of the time, we cannot even put a

> name to them. This seems to make what we're feeling even worse at times.

> I've learned that no matter what kind of emotion I'm feeling, I need to go

> with the flow....even if it's anger. I have to deal with the emotion and

> let it runs its course....this is how I will heal. We're all human, and

we

> all feel many different kinds of emotions, and it's o.k. to be angry,

hurt,

> frustrated, elated, sad, etc..., but what we do with them is what's

> important.

>

> I refuse to allow myself to go into tomorrow, no matter what. Today is

> God's gift to me and what I do with today is my gift back to Him. I don't

> need to go to tomorrow, because I know the God of my understanding is

> already there. I live for today, one day at a time! I am fortunate

enough

> that I can stay home with and not have to go out of the home to

work.

> Why should I spend my precious and quality time with my beautiful

daughter,

> worrying about something that may never happen? This does not make sense

to

> me. Yes, I can prepare, but my energies lie in the now.

>

> I know many of you are very concerned about what the future holds for your

> child, and this is probably the most scariest part of the whole scenario.

> Perhaps I am one of the luckier ones, where my daughter is less affected

by

> DS, and I have high hopes for her, just like I do with my other children.

> In my eyes and heart, she is no different than any other member of my

> family....believe me, there are traces of MDS in everyone in this

household!

> She is perfect, to me and to God. This is all that matters to me.

>

> Yes, I do shed some heart-warming tears on occasion.....but they are happy

> and positive tears, because I feel so blessed to have been given the

> opportunity to raise this child by God. I hope I'm not sounding preachey

> here, cause I'm not.......my spiritual connection to God is VERY strong,

and

> I don't feel any of the negative emotions that many of you do. Don't get

me

> wrong please, my world did come crashing in the day was born and my

> doctor told me they were going to test her because they think she might

have

> DS. It was not 8 hours after her birth that all the negative vanished,

and

> I had the most glorious spiritual moment when they brought to me

that

> night, the day she was born. I've never felt anything negative since.

>

> I think I've rambled enough here......not sure where I was planning on

going

> with all of this......I hope I haven't offended anyone, and if I did, I

> sincerely apologize. Maybe I just needed to get this all out! Thanks for

> listening.

>

> Bree

> Mommy to (2 days shy of 8 mos., mds) and 3 siblings

> MosaicDS Listowner

> National MDS List Facilitator

> http://www.mosaicdownsyndrome.com

> http://www.insidetheweb.com/mbs.cgi/mb778401 (MDS Message Board)

>

>

>

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

> PERFORM CPR ON YOUR APR!

> Get a NextCard Visa, in 30 seconds! Get rates as low as

> 0.0% Intro or 9.9% Fixed APR and no hidden fees.

> Apply NOW!

> http://click./1/2121/1/_/581564/_/953159196/

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

>

> Won't you please consider adding your personal story on the MDS website

today? http://www.mosaicdownsyndrome.com And please don't forget to check

the message board frequently...it's a great way to meet others who are

affected by MDS, who are not on our mailing list!

http://www.insidetheweb.com/mbs.cgi/mb778401

>

[Guest guest]

Thank you all so much for your kind and encouraging

responses to my post. I can't tell you how much

I appreciated them and how good they made me feel.

I had tears in my eyes writing mine, and I had

tears in my eyes reading yours. It was so encouraging

to hear that others have experienced, and still do

experience, some of the same feelings that I've had.

Shane is such a blessing to us, and we are so thankful

and lucky that God entrusted us with this very precious

gift. I think that sometimes my feelings are affected

by forgetting that Shane is in God's hands, and that

the Lord will help us each day to raise this little boy.

I know this in my heart, but sometimes it doesn't

make it to my head!!

Thank you, Dan, for that wonderful article. It

just proves what we already know -- that we have

wonderful children who are very capable of accomplishing

much!!

Thanks again to all!!

Deborah (mommy to Logan, 2.5 and Shane, MDS, 8 mos, who

blew raspberries almost the entire evening last night!!)

[Guest guest]

You're not alone at all.... I find myself crying at the Mcs drive thru

when I see a woman with Down's working the fries, or in Toys R Us when i see

a young man with Down's stocking the shelves, or during the Oprah Winfrey

intro, where she kisses a man with Down's, or special olympics commercials,

or television programs with people with Down's in them....etc

but I too have been accused of being overly emotional, but of course it's by

my husband, who just doesn't understand the emotions of a woman, or of a

mother.. =)

Angel

[Guest guest]

I think that sometimes my feelings are affected

>by forgetting that Shane is in God's hands, and that

>the Lord will help us each day to raise this little boy.

>I know this in my heart, but sometimes it doesn't

>make it to my head!!

>

Deborah,

This is definitely the hardest one to truly learn. Sometimes, I'm

really good at it and at other times, I just " forget " in my heart. For me

this is so true in all facets of my life, not just when it comes to my

daughter. Thanks for sharing.

Carla Duffy

MO Maggie 3 3/4 (mds)

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

Dear Deborah,

My son is three and I too have felt the same emotions you have. I don't

believe they ever fully go away, but as far as dealing with our fears every

day, I think they get easier. That doesn't mean I don't have a bad day,

cause believe me I do, but I know I have a great support group on this web

site so I am never alone.

's speech therapist and I have discussed total communication and I am

thinking, for , this is the way to go. With our signing (which is VERY

basic) we have eliminated many frustrations that we had due to our inability

to relate to each other. It has actually helped his progess in speech. I

too am very emotional and I thought I would have a difficult time with

signing, but I am looking forward to being able to communicate with my son.

I try to look at it as learning a new language and the many possiblilties it

will bring to my family's life. I have faith that you will pull through this

time just fine and that things will get easier. It would be dishonest, and

we all know this, to say the feelings go away...they never will...but you

have the power to do many positive things with these feelings, possibly

change one person's outlook on Down Syndrome. If we could all change just

one person...think how many people would be enlightened that Down Syndrome is

NOT a death sentence, but merely one of life's MANY challenges. OK, I'm done

preaching...sorry about that friends...I can share my point of view and NOT

get interrupted and that is nonexistent in my house!!!!!!!! Thanks for

putting up with my sermons!!!!

mom to 4 loud and vocal males...well 3 boys and 1 husband

[Guest guest]

Thank you Dan for your letter to Deborah. I did not read the article, but I

cried reading your beautiful words of inspiration. I couldn't have said it

better. Thank you again.

mom to 7, Casey 5 and 3 MDS

[Guest guest]

Dear Dan,

Just read the article...can hardly see right now to type another thank

you... is definitely a role model for everyone. Thanks again for

splurging!!!!

mom to 3 boys, Chris7, Casey 5 and 3 MDS