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I would tell them that probably all of us have felt the exact same way when

we received the diagnosis. You are entitled to your feelings of devastation,

grief, anger, fear etc. However I would also tell them that these feelings

will eventually go away when you start living life with your child. The

reality of having a child with MDS is never as bad as anything you have

imagined.

Your child will amaze you with all the things they will be able to

accomplish. You will feel the greatest pride in their accomplishments and the

greatest joys in watching them grow up.

The diagnosis will always be there and there will be issues to deal with as

your child grows, but it will not be all absorbing. MDS becomes a part of

you and your child's life, but it becomes a very small part. You will not

think daily about the fact that your child has MDS.

You are never alone. There is so much support available and this e-group is

the best support you could possible find. I wish it was around when I

received my daughter's diagnosis. It would have made my pregnancy a whole lot

easier.

The future of any child is uncertain. Don't worry about what tomorrow will

bring for your child, enjoy life with them today.

ann (Mom to 12 yrs old, mds)

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I'd say they are not alone. Especially if they have found IMDSA and the

e-group, they are most definitely not alone. They can go on. They must

go on, they WILL go on -- in most cases there are other children --

THEIR children -- who are counting on them.

, who was diagnosed when she was 16 months old.... is now

approaching her 16th birthday. She wears orthotics in her shoes because

her ankles are woefully weak. She has always had an issue with weight

and probably always will. Her social skills ranges from 4th grade to

10th grade... depending on her mood, her level of nervousness and quite

frankly how much sleep she's had. I have been a part of her life... and

more importantly, she has been a part of MY life since she was 5 years

old.

She is in mainstreamed high school classes. She does not receive any

additional services at this time, despite being fully entitled to it

and having received it in the past. She works on the yearbook (second

year) and has recently joined the forensics team.

In her first year of high school, she earned her academic letter and

she now has her letter jacket and wears it proudly. She wants to be a

performer (singer) but knows if that doesn't work out she needs a

second choice and wants to be a journalist. was about 12 or 13

when she learned she has MDS.

Devastated? Yeah, you COULD look at it that way. You could think your

child, your little baby will not have a very good life. Your world may

SEEM to be crashing down around you, but your child, your little baby

doesn't know any of that. In fact, I think most parents of MDS children

would say their child is generally happy (I must say, when got

her first period and since, she has been a little more " moody " but I

don't htink that's any different than any other teenage girl....her

younger sister is 13.5 and please... PLEASE! Dear God! Please! Let that

girl get her first period soon! She's making seem like a dream

in comparison).

So, what would I say? Well, as you may have guessed, I'd say 'suck it

up and be a parent.' No one grows up wishing to have a child with any

problems. But it happens. Its not your fault. Shit happens. Deal with

it. You have a gift from God. Cherish your children.

:::: stepping down ::::

Alright, who put this soapbox in here?!?

;-)

stepdad to (15.75 MDS), Jordan (13.5) and Sydney (11.6)

--- Kristy Colvin wrote:

> If a new parent came to you and told you their child was just

> diagnosed with MDS and they were absolutely devastated. What would

> you say?

>

> If the parent said they felt like their world was crashing down on

> them. What would you say?

>

> If the parent said all they ever think about is this dx and that it

> was taking over their life. What would you say?

>

> If the parent said they couldn't go on. What would you say?

>

> If the parent said they felt like they were all alone. What would

> you say?

>

> There are many parents on this board that may feel this way right

> now. Please answer these questions if you can. Your answers may make

> a huge difference to these parents and really help them understand

> what it is like to have a child with MDS.

>

> thank you

> kristy

>

>

>

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I can't say it any better or more eloquently than did, but I agree

with him whole heartedly.

Darlene

>

> I'd say they are not alone. Especially if they have found IMDSA and the

> e-group, they are most definitely not alone. They can go on. They must

> go on, they WILL go on -- in most cases there are other children --

> THEIR children -- who are counting on them.

>

> , who was diagnosed when she was 16 months old.... is now

> approaching her 16th birthday. She wears orthotics in her shoes because

> her ankles are woefully weak. She has always had an issue with weight

> and probably always will. Her social skills ranges from 4th grade to

> 10th grade... depending on her mood, her level of nervousness and quite

> frankly how much sleep she's had. I have been a part of her life... and

> more importantly, she has been a part of MY life since she was 5 years

> old.

>

> She is in mainstreamed high school classes. She does not receive any

> additional services at this time, despite being fully entitled to it

> and having received it in the past. She works on the yearbook (second

> year) and has recently joined the forensics team.

>

> In her first year of high school, she earned her academic letter and

> she now has her letter jacket and wears it proudly. She wants to be a

> performer (singer) but knows if that doesn't work out she needs a

> second choice and wants to be a journalist. was about 12 or 13

> when she learned she has MDS.

>

> Devastated? Yeah, you COULD look at it that way. You could think your

> child, your little baby will not have a very good life. Your world may

> SEEM to be crashing down around you, but your child, your little baby

> doesn't know any of that. In fact, I think most parents of MDS children

> would say their child is generally happy (I must say, when got

> her first period and since, she has been a little more " moody " but I

> don't htink that's any different than any other teenage girl....her

> younger sister is 13.5 and please... PLEASE! Dear God! Please! Let that

> girl get her first period soon! She's making seem like a dream

> in comparison).

>

> So, what would I say? Well, as you may have guessed, I'd say 'suck it

> up and be a parent.' No one grows up wishing to have a child with any

> problems. But it happens. Its not your fault. Shit happens. Deal with

> it. You have a gift from God. Cherish your children.

>

> :::: stepping down ::::

>

> Alright, who put this soapbox in here?!?

>

> ;-)

>

>

>

> stepdad to (15.75 MDS), Jordan (13.5) and Sydney (11.6)

>

> --- Kristy Colvin wrote:

>

> > If a new parent came to you and told you their child was just

> > diagnosed with MDS and they were absolutely devastated. What would

> > you say?

> >

> > If the parent said they felt like their world was crashing down on

> > them. What would you say?

> >

> > If the parent said all they ever think about is this dx and that it

> > was taking over their life. What would you say?

> >

> > If the parent said they couldn't go on. What would you say?

> >

> > If the parent said they felt like they were all alone. What would

> > you say?

> >

> > There are many parents on this board that may feel this way right

> > now. Please answer these questions if you can. Your answers may make

> > a huge difference to these parents and really help them understand

> > what it is like to have a child with MDS.

> >

> > thank you

> > kristy

> >

> >

> >

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I would definitely say they are not alone. At one point I do remember

feeling upset in the hospital thinking what would 's future be? The

next day for what ever reason I new everything was going to be alright once

I got out of the hospital. I remember my high school health teacher telling

us.... that it is one extra chromosome, and people with Down syndrome can do

anything just like the rest of us. I also new that he was going to have Down

syndrome, I had a level two sono that showed nothing, but I new..... When

he was born there was something just a little bit different about him and I

new...My friend who is my OB/GYN said I think he has Ds, but I am not sure.

She also said god doesn't give you anything we can't handle, and I

remember being upset and saying I know. I said do you know what

mean's and she said no. I said it mean's a gift from god.

I have never looked backed since then, is truly a gift and I would

not be afraid to have another child if my husband wanted more children. I

was given this little life and I could make him shine. And that is what I

am doing. I would also say that...children born now with Ds could not have

been born at a better time! We have come along way but...will still have

along way to go, and it is up to you the parent to let your little one shy.

All the promises of tomorrow are there's.

mom to 10, 8, 5 and 3 MDs

What would you say?

> If a new parent came to you and told you their child was just diagnosed

> with MDS and they were absolutely devastated. What would you say?

>

> If the parent said they felt like their world was crashing down on them.

> What would you say?

>

> If the parent said all they ever think about is this dx and that it was

> taking over their life. What would you say?

>

> If the parent said they couldn't go on. What would you say?

>

> If the parent said they felt like they were all alone. What would you

> say?

>

> There are many parents on this board that may feel this way right now.

> Please answer these questions if you can. Your answers may make a huge

> difference to these parents and really help them understand what it is

> like to have a child with MDS.

>

> thank you

> kristy

>

>

>

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corretion, I ment to say shine.

What would you say?

>

>

>> If a new parent came to you and told you their child was just diagnosed

>> with MDS and they were absolutely devastated. What would you say?

>>

>> If the parent said they felt like their world was crashing down on

>> them.

>> What would you say?

>>

>> If the parent said all they ever think about is this dx and that it was

>> taking over their life. What would you say?

>>

>> If the parent said they couldn't go on. What would you say?

>>

>> If the parent said they felt like they were all alone. What would you

>> say?

>>

>> There are many parents on this board that may feel this way right now.

>> Please answer these questions if you can. Your answers may make a huge

>> difference to these parents and really help them understand what it is

>> like to have a child with MDS.

>>

>> thank you

>> kristy

>>

>>

>>

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If a new parent came to you and told you their child was just diagnosed with MDS

and they were absolutely devastated. What would you say?

I would tell them I know exactly how they feel. Point them to this website and

let them cry - until they were done crying. Then I would introduce them to my

son Caden who has MDS and so far has had no developmental delays and is a happy

fun-loving 2 year old who NEVER stops talking. By the way he can also be quite

a little devil.

If the parent said they felt like their world was crashing down on them.

What would you say?

My husband and I were " lucky " when we found out Caden had MDS. Before we

knew about the MDS he only had a 20% chance to live and if he did we were going

to be spending the next 9 - 18 mos. in the hospital so he could have Chemo.

With the diagnosis of MDS he didn't have to have chemo and he was out of the

hospital in 5 days. I think God made our world come crashing down on us so when

we were told about the MDS it wasn't the worst thing that could happen. It

truly is not the worst thing that can happen, not having your child at all is

the worst thing that can happen.

If the parent said all they ever think about is this dx and that it was

taking over their life. What would you say?

I have a 5 year old little girl who doesn't have MDS and do I worry about what

the future holds for her - no, I just enjoy her. When I found myself constantly

looking into Caden's future and worrying about it, I reminded myself of that and

I slowly learned to enjoy each moment.

If the parent said they couldn't go on. What would you say?

It is scarey, but if you surround yourself with people who will love and

support you and your child you can go on and you will be a happier person

because you have this little person who needs you. One of our radio stations in

town is having a telethon for Gillette's Childrens Hospital. It mainly takes

care of children with special needs from cerebal palsy, car accidents, etc.

They have the parents or the kids tell their story and one parent was speaking

about her daughter that was diagnosised with a rare disease and has had 60

surgeries so far in her life. The thing that really caught me was she said that

when her daughter was diagnosed as a baby she had to grieve, for the child she

had dreamed she would be and once she grieved she was able to enjoy all that her

child was. We all have visions of what are children will do in their lives - we

hope and dream certain things and when the dream is shattered we must grieve

that dream. But remember you may have to grieve those same dreams with a child

that does not have MDS. It does take time so you need to be patient with

yourself.

If the parent said they felt like they were all alone. What would you say?

We are all alone at times in our lives. When we feel alone we need to reach

out to people - because in reality we are not alone. That is what this group is

for so none of us has to feel alone.

- mom to Ella (5) and Caden (2.5 - MDS)

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This is beautiful

Hauschildt wrote: If a new parent came to you

and told you their child was just diagnosed with MDS and they were absolutely

devastated. What would you say?

I would tell them I know exactly how they feel. Point them to this website and

let them cry - until they were done crying. Then I would introduce them to my

son Caden who has MDS and so far has had no developmental delays and is a happy

fun-loving 2 year old who NEVER stops talking. By the way he can also be quite a

little devil.

If the parent said they felt like their world was crashing down on them. What

would you say?

My husband and I were " lucky " when we found out Caden had MDS. Before we knew

about the MDS he only had a 20% chance to live and if he did we were going to be

spending the next 9 - 18 mos. in the hospital so he could have Chemo. With the

diagnosis of MDS he didn't have to have chemo and he was out of the hospital in

5 days. I think God made our world come crashing down on us so when we were told

about the MDS it wasn't the worst thing that could happen. It truly is not the

worst thing that can happen, not having your child at all is the worst thing

that can happen.

If the parent said all they ever think about is this dx and that it was taking

over their life. What would you say?

I have a 5 year old little girl who doesn't have MDS and do I worry about what

the future holds for her - no, I just enjoy her. When I found myself constantly

looking into Caden's future and worrying about it, I reminded myself of that and

I slowly learned to enjoy each moment.

If the parent said they couldn't go on. What would you say?

It is scarey, but if you surround yourself with people who will love and support

you and your child you can go on and you will be a happier person because you

have this little person who needs you. One of our radio stations in town is

having a telethon for Gillette's Childrens Hospital. It mainly takes care of

children with special needs from cerebal palsy, car accidents, etc. They have

the parents or the kids tell their story and one parent was speaking about her

daughter that was diagnosised with a rare disease and has had 60 surgeries so

far in her life. The thing that really caught me was she said that when her

daughter was diagnosed as a baby she had to grieve, for the child she had

dreamed she would be and once she grieved she was able to enjoy all that her

child was. We all have visions of what are children will do in their lives - we

hope and dream certain things and when the dream is shattered we must grieve

that dream. But remember you may have to grieve those same dreams

with a child that does not have MDS. It does take time so you need to be

patient with yourself.

If the parent said they felt like they were all alone. What would you say?

We are all alone at times in our lives. When we feel alone we need to reach out

to people - because in reality we are not alone. That is what this group is for

so none of us has to feel alone.

- mom to Ella (5) and Caden (2.5 - MDS)

----------

No virus found in this outgoing message.

Checked by AVG Free Edition.

Version: 7.1.375 / Virus Database: 268.1.1/273 - Release Date: 3/2/2006

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This is beautiful

Hauschildt wrote: If a new parent came to you

and told you their child was just diagnosed with MDS and they were absolutely

devastated. What would you say?

I would tell them I know exactly how they feel. Point them to this website and

let them cry - until they were done crying. Then I would introduce them to my

son Caden who has MDS and so far has had no developmental delays and is a happy

fun-loving 2 year old who NEVER stops talking. By the way he can also be quite a

little devil.

If the parent said they felt like their world was crashing down on them. What

would you say?

My husband and I were " lucky " when we found out Caden had MDS. Before we knew

about the MDS he only had a 20% chance to live and if he did we were going to be

spending the next 9 - 18 mos. in the hospital so he could have Chemo. With the

diagnosis of MDS he didn't have to have chemo and he was out of the hospital in

5 days. I think God made our world come crashing down on us so when we were told

about the MDS it wasn't the worst thing that could happen. It truly is not the

worst thing that can happen, not having your child at all is the worst thing

that can happen.

If the parent said all they ever think about is this dx and that it was taking

over their life. What would you say?

I have a 5 year old little girl who doesn't have MDS and do I worry about what

the future holds for her - no, I just enjoy her. When I found myself constantly

looking into Caden's future and worrying about it, I reminded myself of that and

I slowly learned to enjoy each moment.

If the parent said they couldn't go on. What would you say?

It is scarey, but if you surround yourself with people who will love and support

you and your child you can go on and you will be a happier person because you

have this little person who needs you. One of our radio stations in town is

having a telethon for Gillette's Childrens Hospital. It mainly takes care of

children with special needs from cerebal palsy, car accidents, etc. They have

the parents or the kids tell their story and one parent was speaking about her

daughter that was diagnosised with a rare disease and has had 60 surgeries so

far in her life. The thing that really caught me was she said that when her

daughter was diagnosed as a baby she had to grieve, for the child she had

dreamed she would be and once she grieved she was able to enjoy all that her

child was. We all have visions of what are children will do in their lives - we

hope and dream certain things and when the dream is shattered we must grieve

that dream. But remember you may have to grieve those same dreams

with a child that does not have MDS. It does take time so you need to be

patient with yourself.

If the parent said they felt like they were all alone. What would you say?

We are all alone at times in our lives. When we feel alone we need to reach out

to people - because in reality we are not alone. That is what this group is for

so none of us has to feel alone.

- mom to Ella (5) and Caden (2.5 - MDS)

----------

No virus found in this outgoing message.

Checked by AVG Free Edition.

Version: 7.1.375 / Virus Database: 268.1.1/273 - Release Date: 3/2/2006

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If a new parent came to you and told you their child was just diagnosed

with MDS and they were absolutely devastated. What would you say?

I would say that God picks special people to be the parents of these amazing

children. We were devastated too when we got the news. But if you can just

hold on long enough to get past the initial shock, you will find that a

wonderful little person has entered your life.

If the parent said they felt like their world was crashing down on

them. What would you say?

I would tell them that every time I felt the world crashing down, I found a

wonderful group of people to turn to. There is always someone here who has

experienced the same things that we are going through and if they don't have a

solution to the problem, they at least have a lot of encouraging words.

If the parent said all they ever think about is this dx and that it

was taking over their life. What would you say?

It was all I ever thought about at first too. Then I realized that I don't

have a Mosiac Down Syndrome grandson, I have a wonderful grandson who just

happens to have MDS. I would say, educate yourself. That is the best way to

get rid of the fear of the unknown.

If the parent said they couldn't go on. What would you say?

God chose you because he knew you were strong enough to handle this. When you

feel like you can't go on - and we all do sometimes - lean on us.

If the parent said they felt like they were all alone. What would you

say?

As long as this web site is active - you will never be alone.

Kristy Colvin wrote:

If a new parent came to you and told you their child was just diagnosed with

MDS and they were absolutely devastated. What would you say?

If the parent said they felt like their world was crashing down on them. What

would you say?

If the parent said all they ever think about is this dx and that it was taking

over their life. What would you say?

If the parent said they couldn't go on. What would you say?

If the parent said they felt like they were all alone. What would you say?

There are many parents on this board that may feel this way right now. Please

answer these questions if you can. Your answers may make a huge difference to

these parents and really help them understand what it is like to have a child

with MDS.

thank you

kristy

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