Re: Introducing myself - long (sorry!)

[Guest guest]

Seph,

First and foremost- Welcome! And congratulations on your new baby!!

I think almost all of us here, can relate in some way to what you're

feeling. The way I describe it in hindsight, is that I had to literally GRIEVE

for

the child of my imagination- that baby I dreamed of, all the things that I

day dreamed about, etc... It was a very real grieving process! I don't want

to put down anything your feeling with a bunch of " it'll be ok " s and " don't

worry about it " s...... but maybe, just a.....it's ok to feel the way

you're feeling.

I'm glad you found us....and look forward to getting to know more about you

and your family. And please, feel free to share anything you like here--

we're all at different stages, and come with different insights, but can all

relate!

My son is 15 now--- he was diagnosed at 16 months old.

Angel

Mom of 6

Utah

In a message dated 8/29/2008 7:04:57 P.M. Mountain Daylight Time,

sephh@... writes:

Hi everyone,

My name is Seph, I'm 33 and I'm from Perth, Australia. I am married

to (36) and we have twin daughters through IVF, Jade & Taya who

are 4 and have just had another little baby girl, Sienna, 8 weeks ago

who has been diagnosed with MDS. During my pregnancy I had the tests

and they were all normal. When she was born the doctor took her away

for 'oxygen' (we even knew at the time that was wrong because she

didn't need it), what he was doing was checking her out and giving

her a blood test, he brought her back to my hospital room an hour

later and told us that he thought Sienna might have Downs. Well

straight away I went into denial, I couldn't believe it was possible

that MY child would have downs syndrome, that only happened to other

people. I looked down at Sienna and REALLY looked at her and that's

when the tears started, because I could see it, I could see the slant

in her eyes that my other daughters didn't have, I could see the

roundness in her face, I could just SEE it. For the next three days

waiting for the test results were like hell, I spent them crying,

shaking, having panic attacks, basically I felt like I was losing my

mind, I stared at her for hours on end and I started not to see

anything wrong, then I was sure the doctor was wrong, she just looked

so 'normal'. In the meantime this new little baby was lying there

needing her mummy and although I still breast-fed her and cuddled

her, I just felt so disconnected to her, I had horrible thoughts,

like I wish I'd never gotten pregnant, why couldn't I just go back to

how it was before she was born, how could this of happened to me,

awful, selfish things like that. I couldn't even call her by her name

without feeling like I was going to have a panic attack. I never left

the hospital room because I didn't want anyone to see her and I

didn't want to see anyone else's 'normal' baby. On the third day I

was in a cold sweat all day, I knew I was finding out that day and I

was dreading it, I didn't want to know, I didn't want it to be real.

We had a room full of people (visitors) and I knew that if the doctor

came in and told everyone to leave then it was bad news and if it was

good news he would just say it in front of everyone. Well, he came

in and told everyone to leave. I fell to the floor and sobbed. It

was the saddest, scariest moment of my life. He told and

myself that Sienna had mosaic downs, that in terms of DS we should be

happy, that this was a good outcome, I just looked at him with

disbelief! how could I be happy? how could this be a good outcome?

We took her home 4 days later, somber and sad, not happy and

celebrating like we'd planned.

It has been 8 weeks and some things have changed for me since then.

The first and most important thing is that I have fallen deeply and

madly in love with this little girl, she brings me peace and and

calms me when I am feeling so scared and sad, which I have to say is

most of the time. My other two daughters are madly in love with

their baby sister and smother her with love. (who bonded with

Sienna straight away at the hospital) is madly in love with her. She

is totally surrounded by love. But I am still so desperately sad

and I am horribly frightened. I am so scared for what this means for

Sienna's future. My dreams for her feel lost - school, job,

marriage, children, independence - will she have any of this? why has

this beautiful little girl been cheated of these things? it is so

unfair for her. I hate that this has happened. I feel like someone

is screaming in my head 24 hours, I can't turn my mind off, just

thinking about it all day and all night. I search Sienna for 'signs'

and get so frustrated because I can't see any, she just looks like my

other daughters did when they were babies, she is strong, she has no

physical outward symptoms, her heart is fine - all these things

confuse me - does this mean she doesn't have it as bad? or does it

mean nothing like that? I think, maybe they made a mistake, but then

I know a blood test doesn't lie. I am terrified I am setting myself

up for heartbreak by thinking she is doing so well, when she is only

8 weeks old and it could all go wrong very quickly.

So that is where I am at the moment, sorry if I sound so grim, I so

badly want it all to feel 'OK' and I want to accept it and move on to

different things, like what can I do for her now, what can I learn to

help her. Contacting this group and writing this down is my first

step I have taken to accepting this as a real thing in my life, I am

hoping it is step in the right direction.

Thank you for taking the time to read my story and I look forward to

meeting you all and getting to know you.

Seph

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[Guest guest]

Seph -

I felt the same way when I heard the news - MY DREAMS for my daughter had

gone down the toilet! I wanted her to get married, have children, be a Math

wiz. I was going to make sure my daughter was NOT afraid of math and

understood all her math. After I got the diagnosis, I was devastated. Then

she got sick and was in the hospital for 2 weeks barely clinging to life. I

wrote earlier about how I felt. Now I feel different, and some of it is

because of IMDSA (which was not around when got her diagnosis). At

the time this list wasn't around, there was nothing more than a few

paragraphs available on the web, after I got home from the hospital Bree

started a little e-list and then Bree made it a Yahoo group then more and

more people joined and we held elections and Kristy became president and got

IMDSA started and I met some WONDERFUL people on-line and in person.

People who are showing me that people with MDS do find love and get

married. People who are showing me that People with MDS can have children

and be good parents. People who are giving me the encouragement to dream

big for my daughter. Right now, in her IEP it states that would like

to be a nurse and I think she will be a wonderful nurse, she has so much

empathy and caring for others. She loves babies and is always talking about

getting married and having a child. I am NOT going to squash that dream for

her.

Unfortunately, she HATES math. But her mom is going to be a high school

math teacher and she is going to learn to love it whether she likes it or

not. I am not saying it is going to be easy but there are people here who

have been through it all, I made many mistakes and I would do it so

differently if I could do it again - I did not realize how important speech

was, or coloring, or many other things. But I did do many things right too

- I listened to my daughter and when she told me her heart hurt, I took her

to a cardiologist and low and behold at 8 years old they found a hole in her

heart (that was there since she was a baby). And I saw that as a baby she

was vomiting up food that we had weeks ago and I insisted she get the Barium

even though the doctors did not want to. And I joined Communicating

Partners which showed me the right way to get my daughter to talk. And I

went to the IMDSA conference and was able to network with other parents and

meet them face-to-face and talk about MDS. And I fought the school who

wanted to write her off as MR and put her in a life skills class instead of

teaching her reading and math. Read all the emails and you will find little

tidbits of knowledge to help you along. I know I do.

Darlene - Mom to (11) and (9)

P.S. - we have some lovely people in Australia

On Fri, Aug 29, 2008 at 9:10 PM, Persephone Mackinnon wrote:

> Hi everyone,

>

> My name is Seph, I'm 33 and I'm from Perth, Australia. I am married

> to (36) and we have twin daughters through IVF, Jade & Taya who

> are 4 and have just had another little baby girl, Sienna, 8 weeks ago

> who has been diagnosed with MDS. During my pregnancy I had the tests

> and they were all normal. When she was born the doctor took her away

> for 'oxygen' (we even knew at the time that was wrong because she

> didn't need it), what he was doing was checking her out and giving

> her a blood test, he brought her back to my hospital room an hour

> later and told us that he thought Sienna might have Downs. Well

> straight away I went into denial, I couldn't believe it was possible

> that MY child would have downs syndrome, that only happened to other

> people. I looked down at Sienna and REALLY looked at her and that's

> when the tears started, because I could see it, I could see the slant

> in her eyes that my other daughters didn't have, I could see the

> roundness in her face, I could just SEE it. For the next three days

> waiting for the test results were like hell, I spent them crying,

> shaking, having panic attacks, basically I felt like I was losing my

> mind, I stared at her for hours on end and I started not to see

> anything wrong, then I was sure the doctor was wrong, she just looked

> so 'normal'. In the meantime this new little baby was lying there

> needing her mummy and although I still breast-fed her and cuddled

> her, I just felt so disconnected to her, I had horrible thoughts,

> like I wish I'd never gotten pregnant, why couldn't I just go back to

> how it was before she was born, how could this of happened to me,

> awful, selfish things like that. I couldn't even call her by her name

> without feeling like I was going to have a panic attack. I never left

> the hospital room because I didn't want anyone to see her and I

> didn't want to see anyone else's 'normal' baby. On the third day I

> was in a cold sweat all day, I knew I was finding out that day and I

> was dreading it, I didn't want to know, I didn't want it to be real.

> We had a room full of people (visitors) and I knew that if the doctor

> came in and told everyone to leave then it was bad news and if it was

> good news he would just say it in front of everyone. Well, he came

> in and told everyone to leave. I fell to the floor and sobbed. It

> was the saddest, scariest moment of my life. He told and

> myself that Sienna had mosaic downs, that in terms of DS we should be

> happy, that this was a good outcome, I just looked at him with

> disbelief! how could I be happy? how could this be a good outcome?

> We took her home 4 days later, somber and sad, not happy and

> celebrating like we'd planned.

>

> It has been 8 weeks and some things have changed for me since then.

> The first and most important thing is that I have fallen deeply and

> madly in love with this little girl, she brings me peace and and

> calms me when I am feeling so scared and sad, which I have to say is

> most of the time. My other two daughters are madly in love with

> their baby sister and smother her with love. (who bonded with

> Sienna straight away at the hospital) is madly in love with her. She

> is totally surrounded by love. But I am still so desperately sad

> and I am horribly frightened. I am so scared for what this means for

> Sienna's future. My dreams for her feel lost - school, job,

> marriage, children, independence - will she have any of this? why has

> this beautiful little girl been cheated of these things? it is so

> unfair for her. I hate that this has happened. I feel like someone

> is screaming in my head 24 hours, I can't turn my mind off, just

> thinking about it all day and all night. I search Sienna for 'signs'

> and get so frustrated because I can't see any, she just looks like my

> other daughters did when they were babies, she is strong, she has no

> physical outward symptoms, her heart is fine - all these things

> confuse me - does this mean she doesn't have it as bad? or does it

> mean nothing like that? I think, maybe they made a mistake, but then

> I know a blood test doesn't lie. I am terrified I am setting myself

> up for heartbreak by thinking she is doing so well, when she is only

> 8 weeks old and it could all go wrong very quickly.

>

> So that is where I am at the moment, sorry if I sound so grim, I so

> badly want it all to feel 'OK' and I want to accept it and move on to

> different things, like what can I do for her now, what can I learn to

> help her. Contacting this group and writing this down is my first

> step I have taken to accepting this as a real thing in my life, I am

> hoping it is step in the right direction.

>

> Thank you for taking the time to read my story and I look forward to

> meeting you all and getting to know you.

>

> Seph

>

>

[Guest guest]

Hi Seph,

First of all I remembered feeling scared when my son was born. I

fell in love with him right away, however, I remember crying too! Because I

did not know what the future held for my son. I remember a social worker

came and spoke with me the day I was leaving the hospital. And I told her

I was afraid for the future for my son and I loved him so much. Her name

was Maureen and her exact words to me were mom to mom know one knows what

the future holds for any of our children! And that for me was the first

step that I knew I was going to give my son every possibility to

help him succeed in this world! Today all the promises of tomorrow await

our children! It is not like a long time ago. They go to school, have

friends, learn to do what other children do at their own PACE. And many of

them go on to secondary schools, colleges, learn to drive, work and yes even

marry !! The key is early intervention!! Speech, OT and PT at a early

age!

You and your family have been given a gift!! Your baby girl will love you

and bring you so much joy! Celebrate this life that has been given to you!

All of us were once in your place. I think it is the not knowing and the

what ifs. Life is full of the what ifs! Just don't dwell on them and you

will be all right.

Take care,

mom to 13, almost 11, 8 and 5 and 9

months mDs

From: MosaicDS [mailto:MosaicDS ] On Behalf

Of Persephone Mackinnon

Sent: Friday, August 29, 2008 9:11 PM

To: MosaicDS

Subject: Introducing myself - long (sorry!)

Hi everyone,

My name is Seph, I'm 33 and I'm from Perth, Australia. I am married

to (36) and we have twin daughters through IVF, Jade & Taya who

are 4 and have just had another little baby girl, Sienna, 8 weeks ago

who has been diagnosed with MDS. During my pregnancy I had the tests

and they were all normal. When she was born the doctor took her away

for 'oxygen' (we even knew at the time that was wrong because she

didn't need it), what he was doing was checking her out and giving

her a blood test, he brought her back to my hospital room an hour

later and told us that he thought Sienna might have Downs. Well

straight away I went into denial, I couldn't believe it was possible

that MY child would have downs syndrome, that only happened to other

people. I looked down at Sienna and REALLY looked at her and that's

when the tears started, because I could see it, I could see the slant

in her eyes that my other daughters didn't have, I could see the

roundness in her face, I could just SEE it. For the next three days

waiting for the test results were like hell, I spent them crying,

shaking, having panic attacks, basically I felt like I was losing my

mind, I stared at her for hours on end and I started not to see

anything wrong, then I was sure the doctor was wrong, she just looked

so 'normal'. In the meantime this new little baby was lying there

needing her mummy and although I still breast-fed her and cuddled

her, I just felt so disconnected to her, I had horrible thoughts,

like I wish I'd never gotten pregnant, why couldn't I just go back to

how it was before she was born, how could this of happened to me,

awful, selfish things like that. I couldn't even call her by her name

without feeling like I was going to have a panic attack. I never left

the hospital room because I didn't want anyone to see her and I

didn't want to see anyone else's 'normal' baby. On the third day I

was in a cold sweat all day, I knew I was finding out that day and I

was dreading it, I didn't want to know, I didn't want it to be real.

We had a room full of people (visitors) and I knew that if the doctor

came in and told everyone to leave then it was bad news and if it was

good news he would just say it in front of everyone. Well, he came

in and told everyone to leave. I fell to the floor and sobbed. It

was the saddest, scariest moment of my life. He told and

myself that Sienna had mosaic downs, that in terms of DS we should be

happy, that this was a good outcome, I just looked at him with

disbelief! how could I be happy? how could this be a good outcome?

We took her home 4 days later, somber and sad, not happy and

celebrating like we'd planned.

It has been 8 weeks and some things have changed for me since then.

The first and most important thing is that I have fallen deeply and

madly in love with this little girl, she brings me peace and and

calms me when I am feeling so scared and sad, which I have to say is

most of the time. My other two daughters are madly in love with

their baby sister and smother her with love. (who bonded with

Sienna straight away at the hospital) is madly in love with her. She

is totally surrounded by love. But I am still so desperately sad

and I am horribly frightened. I am so scared for what this means for

Sienna's future. My dreams for her feel lost - school, job,

marriage, children, independence - will she have any of this? why has

this beautiful little girl been cheated of these things? it is so

unfair for her. I hate that this has happened. I feel like someone

is screaming in my head 24 hours, I can't turn my mind off, just

thinking about it all day and all night. I search Sienna for 'signs'

and get so frustrated because I can't see any, she just looks like my

other daughters did when they were babies, she is strong, she has no

physical outward symptoms, her heart is fine - all these things

confuse me - does this mean she doesn't have it as bad? or does it

mean nothing like that? I think, maybe they made a mistake, but then

I know a blood test doesn't lie. I am terrified I am setting myself

up for heartbreak by thinking she is doing so well, when she is only

8 weeks old and it could all go wrong very quickly.

So that is where I am at the moment, sorry if I sound so grim, I so

badly want it all to feel 'OK' and I want to accept it and move on to

different things, like what can I do for her now, what can I learn to

help her. Contacting this group and writing this down is my first

step I have taken to accepting this as a real thing in my life, I am

hoping it is step in the right direction.

Thank you for taking the time to read my story and I look forward to

meeting you all and getting to know you.

Seph

[Guest guest]

Hi Seph

You will find, as you hear everyone's story here, that you are not alone in

your feelings. Every single one of us went through these emotions at one point

or another and even know how you begin to feel guilty for feeling sad about the

diagnosis.

It is obvious that you love Sienna and your other daughters too. So try not to

feel bad about these feelings you are having. You are totally going in the right

direction! You have written down your feelings and told them all to us! As you

said, this is your first step to moving forward. I think that is fantastic!

I want to tell you about my son, Tim who is now 22 yrs old.

Tim was not diagnosed until he was 2 1/2 yrs old. More babies are being

diagnosed now than they were before, but because mosaic Down syndrome is so

diverse, each individual has their own symptoms and some look like they have

Down syndrome and others don't. This has nothing to do with how much they will

have delays. It is just a matter of if the cells are located in the area that

cause the physical characteristics or not.

Tim had a speech delay and this is what led us to the diagnosis. He was

talking, but just not in sentences and it was hard to understand him.

When the doctors told me that they suspected he had MDS, I had so many

emotions I didn't know what to think or how to feel. I was scared, worried, sad,

confused, angry, and relieved because I finally had an answer to his delay, all

at the same time.

I had to wait 6 long weeks before I got the results back. I honestly can not

tell you much about those six weeks. I remember sitting on the edge of my bed

one day and just staring at the wall. I was in complete shock. I fed my kids and

made sure they were taken care of in every way, but other than that, I think I

just stared. I didn't want to talk about it to anyone. I just waited.

Finally 6 wks later I got his diagnosis and realized that it had not changed

anything about Tim just by knowing. As I sat in the hospital room and as they

told me the diagnosis, Tim was happily playing on the floor with his older

brother Arron. I had promised them that I would take them to Mcs after the

appointment if they were good. (firm believer in bribery!) After they told me

the diagnosis, and we were walking down the hall, Tim said " donalds " meaning

Mcs. He knew that after that appointment he was getting french fries and a

happy meal and he could play on the playground. The diagnosis had not changed

who he was. He was still " Timmy " (what we called him then) and he wanted his

promised fun!

For me, I realize I have a little different advantage. I was able to get to

know Tim for himself without the diagnosis first. But even after the diagnosis,

I still struggled for a while and worried about his future.

Eventually, I realized that I didn't know what any of my children's futures

would hold. There was no way for me to know what any of my sons would be growing

up. From then, I decided that I would raise them the best that I could and help

them when they needed help.

I worked hard those first few years to get Tim's speech up to par. Within 9

months he had an unlimited vocabulary and was making many 3-4 word sentences. By

the time he was in 3rd grade he no longer needed speech therapy and has been

talking fine ever since.

Tim only needed a little extra help in school but he did fine with his

learning. Sometimes it would take him a little bit longer to get things done,

but he also has ADHD so this may have been his main problem.

When he was 12 he began writing short stories and the first one he showed us,

we thought he had copied out of a book because it was so good!

When he was 13 he exceeded our state standards in reading and was reading

above a college level. Tim LOVES to read!

In his last year of high school, he was taking a computer graphics class and

because he was messing around, he made a bad grade on one of his tests. He

didn't want me to know about the grade (typical teenager!) so he hacked into the

school districts computer system and changed his grade! They wouldn't have even

known about it but because the teacher knew the grade she gave him was much

lower than what he put, they had caught him in the act!

LOL Not something that is a great moment of pride for my son, but hey! He was

smart enough to hack the whole districts computer system and they didn't know

how he did it!

No one knows what the future holds for any of our children.

Today my eldest son, Arron was in a horrible car accident. He rear ended a

car, drove over a fire hydrant and landed crashed into a telephone pole. He does

not remember any of it and he woke up several minutes after the accident.

Thankfully, other than a concussion and amnesia (that is also happening after

the accident) he is going to be ok. However, when he was born I didn't think

" what happens if he has a horrible accident when he is 26? " I think we worry

about our children's futures only because of what society paints for children

with Down syndrome and mosaic Down syndrome. The futures of our children are

much more promising today than they were even 20 years ago!

Today, we have several young ladies in our membership who have mosaic Down

syndrome and are married and have children of their own. Last year, at our 2007

conference, we had Bishop speak during our banquet. She has mosaic Down

syndrome, is married to her husband Adam who is blind, and they own a

restaurant. They have a 3 yr old little girl and just last week I was told they

are expecting their second child!

Those are the stories that help you get through those times when you are

thinking this is hopeless. Take one day at a time and just enjoy Sienna today.

Kristy

Mom to Arron 26, 23, Tim 22 MDS, Stevan 21 and Garrett 12

Persephone Mackinnon wrote:

Hi everyone,

My name is Seph, I'm 33 and I'm from Perth, Australia. I am married

to (36) and we have twin daughters through IVF, Jade & Taya who

are 4 and have just had another little baby girl, Sienna, 8 weeks ago

who has been diagnosed with MDS. During my pregnancy I had the tests

and they were all normal. When she was born the doctor took her away

for 'oxygen' (we even knew at the time that was wrong because she

didn't need it), what he was doing was checking her out and giving

her a blood test, he brought her back to my hospital room an hour

later and told us that he thought Sienna might have Downs. Well

straight away I went into denial, I couldn't believe it was possible

that MY child would have downs syndrome, that only happened to other

people. I looked down at Sienna and REALLY looked at her and that's

when the tears started, because I could see it, I could see the slant

in her eyes that my other daughters didn't have, I could see the

roundness in her face, I could just SEE it. For the next three days

waiting for the test results were like hell, I spent them crying,

shaking, having panic attacks, basically I felt like I was losing my

mind, I stared at her for hours on end and I started not to see

anything wrong, then I was sure the doctor was wrong, she just looked

so 'normal'. In the meantime this new little baby was lying there

needing her mummy and although I still breast-fed her and cuddled

her, I just felt so disconnected to her, I had horrible thoughts,

like I wish I'd never gotten pregnant, why couldn't I just go back to

how it was before she was born, how could this of happened to me,

awful, selfish things like that. I couldn't even call her by her name

without feeling like I was going to have a panic attack. I never left

the hospital room because I didn't want anyone to see her and I

didn't want to see anyone else's 'normal' baby. On the third day I

was in a cold sweat all day, I knew I was finding out that day and I

was dreading it, I didn't want to know, I didn't want it to be real.

We had a room full of people (visitors) and I knew that if the doctor

came in and told everyone to leave then it was bad news and if it was

good news he would just say it in front of everyone. Well, he came

in and told everyone to leave. I fell to the floor and sobbed. It

was the saddest, scariest moment of my life. He told and

myself that Sienna had mosaic downs, that in terms of DS we should be

happy, that this was a good outcome, I just looked at him with

disbelief! how could I be happy? how could this be a good outcome?

We took her home 4 days later, somber and sad, not happy and

celebrating like we'd planned.

It has been 8 weeks and some things have changed for me since then.

The first and most important thing is that I have fallen deeply and

madly in love with this little girl, she brings me peace and and

calms me when I am feeling so scared and sad, which I have to say is

most of the time. My other two daughters are madly in love with

their baby sister and smother her with love. (who bonded with

Sienna straight away at the hospital) is madly in love with her. She

is totally surrounded by love. But I am still so desperately sad

and I am horribly frightened. I am so scared for what this means for

Sienna's future. My dreams for her feel lost - school, job,

marriage, children, independence - will she have any of this? why has

this beautiful little girl been cheated of these things? it is so

unfair for her. I hate that this has happened. I feel like someone

is screaming in my head 24 hours, I can't turn my mind off, just

thinking about it all day and all night. I search Sienna for 'signs'

and get so frustrated because I can't see any, she just looks like my

other daughters did when they were babies, she is strong, she has no

physical outward symptoms, her heart is fine - all these things

confuse me - does this mean she doesn't have it as bad? or does it

mean nothing like that? I think, maybe they made a mistake, but then

I know a blood test doesn't lie. I am terrified I am setting myself

up for heartbreak by thinking she is doing so well, when she is only

8 weeks old and it could all go wrong very quickly.

So that is where I am at the moment, sorry if I sound so grim, I so

badly want it all to feel 'OK' and I want to accept it and move on to

different things, like what can I do for her now, what can I learn to

help her. Contacting this group and writing this down is my first

step I have taken to accepting this as a real thing in my life, I am

hoping it is step in the right direction.

Thank you for taking the time to read my story and I look forward to

meeting you all and getting to know you.

Seph

Kristy Colvin

IMDSA President

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

International Mosaic Down Syndrome Association

PH:

Toll Free: 1-888-MDS-LINK

http://www.imdsa.org

http://www.mosaicmoments.today.com

[Guest guest]

Well certainly has himself surrounded by females!  Congratulations on your

baby girl!

Let me introduce myself.  My name is Donna and I am one of the grandmothers of

the group.  My grandson, Adam, is 6 and has mds.  My daughter was only 19 and a

single mom when he was born.  I remember her feeling a lot like you described

when he was born.  It was almost the same.  They were doing all kind of blood

test on him and I knew something wasn't right, but I kept it to myself because I

didn't want to scare her.  The next day, the doctor came in and tried to clear

the room but my daughter wouldn't let us leave (me and her sister also pregnant

at the time).  She gave us the news that there was a possibility of DS and both

of my daughters started crying (there were a lot of unbalanced hormones in that

room).  It was two days later when we found out it was MDS.  This seems like it

was so long ago.  Now Adam just acts like a dare devil 6 year old boy.  He has a

speech delay and had some feeding issues that we have overcome.  He is

reading, writing and can outplay anyone I know at Nintendo.  He is the greatest

thing that has ever happened to me.  He is the only boy in our family, so that

is different.  This is a wonderful group.  As you read the post, you will see

all of the amazing things the kids can accomplish.  We have ballerinas,

swimmers, gymnists and even a world famous Cricket player.

My advice to you would be to give yourself time.  Your daughter is only 8 weeks

old and being a new mom is hard enough without all of this extra stuff.  Your

not on a terrible journey, just a different one than you were expecting.  Don't

give up the dreams that you have for your daughter.  She will surprise you with

all of the wonderful things she will accomplish and we will be waiting to hear

about all of them.

Donna Spudic - gram to Adam (6) mds, Skylar (6) and Mia (22mo.)

Membership Officer

 

 

 

Subject: Introducing myself - long (sorry!)

To: MosaicDS

Date: Friday, August 29, 2008, 9:10 PM

Hi everyone,

My name is Seph, I'm 33 and I'm from Perth, Australia. I am married

to (36) and we have twin daughters through IVF, Jade & Taya who

are 4 and have just had another little baby girl, Sienna, 8 weeks ago

who has been diagnosed with MDS. During my pregnancy I had the tests

and they were all normal. When she was born the doctor took her away

for 'oxygen' (we even knew at the time that was wrong because she

didn't need it), what he was doing was checking her out and giving

her a blood test, he brought her back to my hospital room an hour

later and told us that he thought Sienna might have Downs. Well

straight away I went into denial, I couldn't believe it was possible

that MY child would have downs syndrome, that only happened to other

people. I looked down at Sienna and REALLY looked at her and that's

when the tears started, because I could see it, I could see the slant

in her eyes that my other daughters didn't have, I could see the

roundness in her face, I could just SEE it. For the next three days

waiting for the test results were like hell, I spent them crying,

shaking, having panic attacks, basically I felt like I was losing my

mind, I stared at her for hours on end and I started not to see

anything wrong, then I was sure the doctor was wrong, she just looked

so 'normal'. In the meantime this new little baby was lying there

needing her mummy and although I still breast-fed her and cuddled

her, I just felt so disconnected to her, I had horrible thoughts,

like I wish I'd never gotten pregnant, why couldn't I just go back to

how it was before she was born, how could this of happened to me,

awful, selfish things like that. I couldn't even call her by her name

without feeling like I was going to have a panic attack. I never left

the hospital room because I didn't want anyone to see her and I

didn't want to see anyone else's 'normal' baby. On the third day I

was in a cold sweat all day, I knew I was finding out that day and I

was dreading it, I didn't want to know, I didn't want it to be real.

We had a room full of people (visitors) and I knew that if the doctor

came in and told everyone to leave then it was bad news and if it was

good news he would just say it in front of everyone. Well, he came

in and told everyone to leave. I fell to the floor and sobbed. It

was the saddest, scariest moment of my life. He told and

myself that Sienna had mosaic downs, that in terms of DS we should be

happy, that this was a good outcome, I just looked at him with

disbelief! how could I be happy? how could this be a good outcome?

We took her home 4 days later, somber and sad, not happy and

celebrating like we'd planned.

It has been 8 weeks and some things have changed for me since then.

The first and most important thing is that I have fallen deeply and

madly in love with this little girl, she brings me peace and and

calms me when I am feeling so scared and sad, which I have to say is

most of the time. My other two daughters are madly in love with

their baby sister and smother her with love. (who bonded with

Sienna straight away at the hospital) is madly in love with her. She

is totally surrounded by love. But I am still so desperately sad

and I am horribly frightened. I am so scared for what this means for

Sienna's future. My dreams for her feel lost - school, job,

marriage, children, independence - will she have any of this? why has

this beautiful little girl been cheated of these things? it is so

unfair for her. I hate that this has happened. I feel like someone

is screaming in my head 24 hours, I can't turn my mind off, just

thinking about it all day and all night. I search Sienna for 'signs'

and get so frustrated because I can't see any, she just looks like my

other daughters did when they were babies, she is strong, she has no

physical outward symptoms, her heart is fine - all these things

confuse me - does this mean she doesn't have it as bad? or does it

mean nothing like that? I think, maybe they made a mistake, but then

I know a blood test doesn't lie. I am terrified I am setting myself

up for heartbreak by thinking she is doing so well, when she is only

8 weeks old and it could all go wrong very quickly.

So that is where I am at the moment, sorry if I sound so grim, I so

badly want it all to feel 'OK' and I want to accept it and move on to

different things, like what can I do for her now, what can I learn to

help her. Contacting this group and writing this down is my first

step I have taken to accepting this as a real thing in my life, I am

hoping it is step in the right direction.

Thank you for taking the time to read my story and I look forward to

meeting you all and getting to know you.

Seph

[Guest guest]

Wow, Seph, that was awesome. Thanks for making it so " long " - and so real!

We have all been where you describe in one way or another, and lots of times,

even those of us who have been along this way for a very long time, still

travel back and forth from the acceptance to the sadness or the anger.

I want to comment on just one part of what you write, the part about the

future dreams you think are lost. I have six grown children. As for the five

" typical " kids? (I would never call them " normal. " ) Well, I there's a lot about

the way their lives have turned out that I wouldn't have included in my

dreams for them, including one who won't ever be able to become a father.

But the one with MDs has far surpassed any dreams we had for her future. In

fact, I couldn't get to yesterday's e-mail until just now because her fiance

is in town and we were looking at the ballroom where they'll have their

wedding reception next year. We were accompanied by the reporter who spent

much of

today interviewing the happy couple for a story on their engagement.

Their wedding won't look like her older sister's, and neither will their

marriage. But she will have a share of what she wants, even if she can't have it

all. Just like they say in the " We're More Alike Than Different " National

Down Syndrome Congress ads she helped make, you will find that's true for your

baby too.

Hang in there, and don't feel guilty about the " grim " thoughts. There will

be, and it sounds like there already are, many, many more happy ones to

replace them.

Judie, mom to Christi, 29 and others

**************

It's only a deal if it's where you want to go. Find your travel

deal here.

(http://information.travel.aol.com/deals?ncid=aoltrv00050000000047)

[Guest guest]

Dear Seph,

 

Your letter touched my heart.  I think we all know how you were feeling we are

all there at one time.  It is very shocking news when you get this and most will

agree you even go through a grieving process.  Then one day something will

happen and you will put mds into perspective.  I found out my daughter had mds

only by a fluke when she was 10 months old.  I thought it was the worse thing in

the world.  I was devastated.  A few months later I had to take her to the

hospital and there is where I got a real life lesson.  I saw so many children

that were terminally ill.  At that point I realize mds is not the worse thing in

the world.  The worse thing in my would be be a world with out my daughter

Isabella.  All of a sudden mds did not seem all that bad.  I still worry about

her future and strategically try to plan for her, when I am gone.  I use to

associate happiness with success but that is truly not the case.  I am sure we

all know very

successful people and they are not all happy.  We want the best for our

children but what that honestly means is for them to be happy.  I do my best at

trying to make sure Isabella is happy and well adjusted.  Just in case you were

wondering my daughter is 20 months old. She goes up and down the steps, she eats

on her own, plays with her toys.  She does everything any other 20 month old

child would do.  She does have trouble with speech but we are working on that.  

You will see how much joy you get from your child.  I think we get even more

excited than the average parent when our child accomplishing something because

we know it was harder for them.  The thing to remember is they do accomplish!  I

know how you are feeling about mds and thinking about it all of the time.  I do

not dwell on it any more although it is never far from my mind.  I just do not

let it control my life anymore.  Feel free to join in and ask any questions or

provide

any information you might find out.  We are all here to support and learn from

one an other. 

 

Sue

Isabella 20 months mds

Subject: Introducing myself - long (sorry!)

To: MosaicDS

Date: Friday, August 29, 2008, 6:10 PM

Hi everyone,

My name is Seph, I'm 33 and I'm from Perth, Australia. I am married

to (36) and we have twin daughters through IVF, Jade & Taya who

are 4 and have just had another little baby girl, Sienna, 8 weeks ago

who has been diagnosed with MDS. During my pregnancy I had the tests

and they were all normal. When she was born the doctor took her away

for 'oxygen' (we even knew at the time that was wrong because she

didn't need it), what he was doing was checking her out and giving

her a blood test, he brought her back to my hospital room an hour

later and told us that he thought Sienna might have Downs. Well

straight away I went into denial, I couldn't believe it was possible

that MY child would have downs syndrome, that only happened to other

people. I looked down at Sienna and REALLY looked at her and that's

when the tears started, because I could see it, I could see the slant

in her eyes that my other daughters didn't have, I could see the

roundness in her face, I could just SEE it. For the next three days

waiting for the test results were like hell, I spent them crying,

shaking, having panic attacks, basically I felt like I was losing my

mind, I stared at her for hours on end and I started not to see

anything wrong, then I was sure the doctor was wrong, she just looked

so 'normal'. In the meantime this new little baby was lying there

needing her mummy and although I still breast-fed her and cuddled

her, I just felt so disconnected to her, I had horrible thoughts,

like I wish I'd never gotten pregnant, why couldn't I just go back to

how it was before she was born, how could this of happened to me,

awful, selfish things like that. I couldn't even call her by her name

without feeling like I was going to have a panic attack. I never left

the hospital room because I didn't want anyone to see her and I

didn't want to see anyone else's 'normal' baby. On the third day I

was in a cold sweat all day, I knew I was finding out that day and I

was dreading it, I didn't want to know, I didn't want it to be real.

We had a room full of people (visitors) and I knew that if the doctor

came in and told everyone to leave then it was bad news and if it was

good news he would just say it in front of everyone. Well, he came

in and told everyone to leave. I fell to the floor and sobbed. It

was the saddest, scariest moment of my life. He told and

myself that Sienna had mosaic downs, that in terms of DS we should be

happy, that this was a good outcome, I just looked at him with

disbelief! how could I be happy? how could this be a good outcome?

We took her home 4 days later, somber and sad, not happy and

celebrating like we'd planned.

It has been 8 weeks and some things have changed for me since then.

The first and most important thing is that I have fallen deeply and

madly in love with this little girl, she brings me peace and and

calms me when I am feeling so scared and sad, which I have to say is

most of the time. My other two daughters are madly in love with

their baby sister and smother her with love. (who bonded with

Sienna straight away at the hospital) is madly in love with her. She

is totally surrounded by love. But I am still so desperately sad

and I am horribly frightened. I am so scared for what this means for

Sienna's future. My dreams for her feel lost - school, job,

marriage, children, independence - will she have any of this? why has

this beautiful little girl been cheated of these things? it is so

unfair for her. I hate that this has happened. I feel like someone

is screaming in my head 24 hours, I can't turn my mind off, just

thinking about it all day and all night. I search Sienna for 'signs'

and get so frustrated because I can't see any, she just looks like my

other daughters did when they were babies, she is strong, she has no

physical outward symptoms, her heart is fine - all these things

confuse me - does this mean she doesn't have it as bad? or does it

mean nothing like that? I think, maybe they made a mistake, but then

I know a blood test doesn't lie. I am terrified I am setting myself

up for heartbreak by thinking she is doing so well, when she is only

8 weeks old and it could all go wrong very quickly.

So that is where I am at the moment, sorry if I sound so grim, I so

badly want it all to feel 'OK' and I want to accept it and move on to

different things, like what can I do for her now, what can I learn to

help her. Contacting this group and writing this down is my first

step I have taken to accepting this as a real thing in my life, I am

hoping it is step in the right direction.

Thank you for taking the time to read my story and I look forward to

meeting you all and getting to know you.

Seph

[Guest guest]

Hi I felt like I was reading my life story almost owrd for word. My son Truett

is justurning 6 months old. We had a very difficult pregnancy and he is our

third son. He came early 6weeks. And was small for me at 6lbs. I had been to a

OB specialist and had high end sonos every week. we had no clue this was coming.

I had a c-section so we where staying in the hospitol longer anyway. On the

first evening the pediatric specialist came in and told use he believed he had

downs I remember arguing with him telling him he looked just like his brothers

did, eyes and all. My husband has Japanese in him a few lines back, I didnt even

know that. So they did a prelimanary blood test and it came back positive I just

broke down and cried and cried for days and weeks. They did sonograms and all of

his organs were fien no defects we were lucky, but at that time I still didnt

feel lucky. We went home and went to our peditrician and he agreed that he didnt

have all of the

caracteristics and we should wait for the chromosome test to confirm downs. So

back on the emotional roller coaster does he have it or not for the next few

weeks. When we went in for our 2 week check up he had lost down to 4 lbs. He was

always to sleepy to nurse enough so we went to the Childrens NICU in Dallas for

another 2 weeks where more tests were done and he is perfectly healthy. But he

was very undernurished and we almost lost him. So I stayed day and night the

staff was great they put me with people to help. The chromosome test came in

positive and by this time I was just ready to have an answer and deal with it.

None of our friends and family could believe it. I was crushed my I believed

that he would never have his own family, quality of life ext. I feared the way

society would treat him more than anything. The " R " word and so on. I started to

read books and then I stressed out about teaching him everything and not missing

a single moment of

learning opportunity. I have since realized he is fine I am fine. We are all

great. What makes the diagnosis so difficult to me was knowing that there was

going to be a learning disability however great or small it was. In our " normal "

children we dont know this at birth so we dont worry about it prematurely and we

dont over analize every little detail and wonder is this normal or downs. I have

learned to just roll with life and to not get so caught up in the " disability "

part because so far I havnt seen one. We are pretty much on schedule for his

develpoment and he is as strong if not stronger than kids his age. It will get

better and you are not a bad person. And trust me that love just grows and grows

and grows.

Subject: Introducing myself - long (sorry!)

To: MosaicDS

Date: Friday, August 29, 2008, 8:10 PM

Hi everyone,

My name is Seph, I'm 33 and I'm from Perth, Australia. I am married

to (36) and we have twin daughters through IVF, Jade & Taya who

are 4 and have just had another little baby girl, Sienna, 8 weeks ago

who has been diagnosed with MDS. During my pregnancy I had the tests

and they were all normal. When she was born the doctor took her away

for 'oxygen' (we even knew at the time that was wrong because she

didn't need it), what he was doing was checking her out and giving

her a blood test, he brought her back to my hospital room an hour

later and told us that he thought Sienna might have Downs. Well

straight away I went into denial, I couldn't believe it was possible

that MY child would have downs syndrome, that only happened to other

people. I looked down at Sienna and REALLY looked at her and that's

when the tears started, because I could see it, I could see the slant

in her eyes that my other daughters didn't have, I could see the

roundness in her face, I could just SEE it. For the next three days

waiting for the test results were like hell, I spent them crying,

shaking, having panic attacks, basically I felt like I was losing my

mind, I stared at her for hours on end and I started not to see

anything wrong, then I was sure the doctor was wrong, she just looked

so 'normal'. In the meantime this new little baby was lying there

needing her mummy and although I still breast-fed her and cuddled

her, I just felt so disconnected to her, I had horrible thoughts,

like I wish I'd never gotten pregnant, why couldn't I just go back to

how it was before she was born, how could this of happened to me,

awful, selfish things like that. I couldn't even call her by her name

without feeling like I was going to have a panic attack. I never left

the hospital room because I didn't want anyone to see her and I

didn't want to see anyone else's 'normal' baby. On the third day I

was in a cold sweat all day, I knew I was finding out that day and I

was dreading it, I didn't want to know, I didn't want it to be real.

We had a room full of people (visitors) and I knew that if the doctor

came in and told everyone to leave then it was bad news and if it was

good news he would just say it in front of everyone. Well, he came

in and told everyone to leave. I fell to the floor and sobbed. It

was the saddest, scariest moment of my life. He told and

myself that Sienna had mosaic downs, that in terms of DS we should be

happy, that this was a good outcome, I just looked at him with

disbelief! how could I be happy? how could this be a good outcome?

We took her home 4 days later, somber and sad, not happy and

celebrating like we'd planned.

It has been 8 weeks and some things have changed for me since then.

The first and most important thing is that I have fallen deeply and

madly in love with this little girl, she brings me peace and and

calms me when I am feeling so scared and sad, which I have to say is

most of the time. My other two daughters are madly in love with

their baby sister and smother her with love. (who bonded with

Sienna straight away at the hospital) is madly in love with her. She

is totally surrounded by love. But I am still so desperately sad

and I am horribly frightened. I am so scared for what this means for

Sienna's future. My dreams for her feel lost - school, job,

marriage, children, independence - will she have any of this? why has

this beautiful little girl been cheated of these things? it is so

unfair for her. I hate that this has happened. I feel like someone

is screaming in my head 24 hours, I can't turn my mind off, just

thinking about it all day and all night. I search Sienna for 'signs'

and get so frustrated because I can't see any, she just looks like my

other daughters did when they were babies, she is strong, she has no

physical outward symptoms, her heart is fine - all these things

confuse me - does this mean she doesn't have it as bad? or does it

mean nothing like that? I think, maybe they made a mistake, but then

I know a blood test doesn't lie. I am terrified I am setting myself

up for heartbreak by thinking she is doing so well, when she is only

8 weeks old and it could all go wrong very quickly.

So that is where I am at the moment, sorry if I sound so grim, I so

badly want it all to feel 'OK' and I want to accept it and move on to

different things, like what can I do for her now, what can I learn to

help her. Contacting this group and writing this down is my first

step I have taken to accepting this as a real thing in my life, I am

hoping it is step in the right direction.

Thank you for taking the time to read my story and I look forward to

meeting you all and getting to know you.

Seph

[Guest guest]

I believe my great nephew has MDS. Your post reminded me when you

mentioned being Japanese; my neice's husband is Korean and I believe

that is why it has been missed or no one has acted on it. His birth

picture looked dead on the money like DS to me (moreso than any of

us). He had congenital heart issues and thru the grapevine, I have

heard of much more health issues he has had. (including the

allergies). I wonder how many times this actually goes unfounded due

to one parent (or more) being oriental; so,they think the

characteristics are normal?? I do not talk to them and so I really do

not know if they have considered MDS testing. In our family, I would

not be surprised if they found it in his blood cells. I wanted to

write to them and suggest the test, but I did not want to be

offensive and I am not sure it would help them at this point or not?

He must be about 4 years old now. It would not hurt the bonding, I

don't think; but I might hurt some feelings. Not sure? (And I would

not want to do that.)

<br>

>

>

> Subject: Introducing myself - long (sorry!)

> To: MosaicDS

> Date: Friday, August 29, 2008, 8:10 PM

>

>

>

>

>

>

> Hi everyone,

>

> My name is Seph, I'm 33 and I'm from Perth, Australia. I am married

> to (36) and we have twin daughters through IVF, Jade & Taya

who

> are 4 and have just had another little baby girl, Sienna, 8 weeks

ago

> who has been diagnosed with MDS. During my pregnancy I had the

tests

> and they were all normal. When she was born the doctor took her

away

> for 'oxygen' (we even knew at the time that was wrong because she

> didn't need it), what he was doing was checking her out and giving

> her a blood test, he brought her back to my hospital room an hour

> later and told us that he thought Sienna might have Downs. Well

> straight away I went into denial, I couldn't believe it was

possible

> that MY child would have downs syndrome, that only happened to

other

> people. I looked down at Sienna and REALLY looked at her and that's

> when the tears started, because I could see it, I could see the

slant

> in her eyes that my other daughters didn't have, I could see the

> roundness in her face, I could just SEE it. For the next three days

> waiting for the test results were like hell, I spent them crying,

> shaking, having panic attacks, basically I felt like I was losing

my

> mind, I stared at her for hours on end and I started not to see

> anything wrong, then I was sure the doctor was wrong, she just

looked

> so 'normal'. In the meantime this new little baby was lying there

> needing her mummy and although I still breast-fed her and cuddled

> her, I just felt so disconnected to her, I had horrible thoughts,

> like I wish I'd never gotten pregnant, why couldn't I just go back

to

> how it was before she was born, how could this of happened to me,

> awful, selfish things like that. I couldn't even call her by her

name

> without feeling like I was going to have a panic attack. I never

left

> the hospital room because I didn't want anyone to see her and I

> didn't want to see anyone else's 'normal' baby. On the third day I

> was in a cold sweat all day, I knew I was finding out that day and

I

> was dreading it, I didn't want to know, I didn't want it to be

real.

> We had a room full of people (visitors) and I knew that if the

doctor

> came in and told everyone to leave then it was bad news and if it

was

> good news he would just say it in front of everyone. Well, he came

> in and told everyone to leave. I fell to the floor and sobbed. It

> was the saddest, scariest moment of my life. He told and

> myself that Sienna had mosaic downs, that in terms of DS we should

be

> happy, that this was a good outcome, I just looked at him with

> disbelief! how could I be happy? how could this be a good outcome?

> We took her home 4 days later, somber and sad, not happy and

> celebrating like we'd planned.

>

> It has been 8 weeks and some things have changed for me since then.

> The first and most important thing is that I have fallen deeply and

> madly in love with this little girl, she brings me peace and and

> calms me when I am feeling so scared and sad, which I have to say

is

> most of the time. My other two daughters are madly in love with

> their baby sister and smother her with love. (who bonded with

> Sienna straight away at the hospital) is madly in love with her.

She

> is totally surrounded by love. But I am still so desperately sad

> and I am horribly frightened. I am so scared for what this means

for

> Sienna's future. My dreams for her feel lost - school, job,

> marriage, children, independence - will she have any of this? why

has

> this beautiful little girl been cheated of these things? it is so

> unfair for her. I hate that this has happened. I feel like someone

> is screaming in my head 24 hours, I can't turn my mind off, just

> thinking about it all day and all night. I search Sienna

for 'signs'

> and get so frustrated because I can't see any, she just looks like

my

> other daughters did when they were babies, she is strong, she has

no

> physical outward symptoms, her heart is fine - all these things

> confuse me - does this mean she doesn't have it as bad? or does it

> mean nothing like that? I think, maybe they made a mistake, but

then

> I know a blood test doesn't lie. I am terrified I am setting myself

> up for heartbreak by thinking she is doing so well, when she is

only

> 8 weeks old and it could all go wrong very quickly.

>

> So that is where I am at the moment, sorry if I sound so grim, I so

> badly want it all to feel 'OK' and I want to accept it and move on

to

> different things, like what can I do for her now, what can I learn

to

> help her. Contacting this group and writing this down is my first

> step I have taken to accepting this as a real thing in my life, I

am

> hoping it is step in the right direction.

>

> Thank you for taking the time to read my story and I look forward

to

> meeting you all and getting to know you.

>

> Seph

>

>

>

>

>

>

>

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[Guest guest]

Hi Seph

Congratulations on the birth of your little girl. Your husband must already be

practicing his " angry face " skills for when future boyfriends knock on your

door.

I just wanted to let you know that what you are feeling is completely normal, as

many other people have already told you. You are grieving at the moment, and

you need to let yourself do this. It's all part of the healing process.

I went through all the same emotions only 10 months ago. I remember being in

the shower in the hospital, letting the water wash over me, thinking it's all a

bad dream and I'm going to wake up soon. I thought there was no way anyone

would trust me to raise a child with a disability. Surely the big guy up there

knows I'm not strong enough. There must be someone else who would be much

better at it than me. Someone much stronger than me.

Well I surprised myself allot in the first 2 weeks after Hunter's diagnosis and

I keep on surprising myself each and every step of the way (so far). No doubt

you'll surprise yourself too Seph. Just give yourself time. Enjoy your

beautiful little girl coz before you know it she'll be just as grown up as your

4 yold's are now.

We live in Melbourne, so please if you need anyone to chat too I'm all ears.

Let me know.

Just to update on Hunter, last time I sent a message he was Dad, dad, dad to

everything, well I'm pleased to report I'm getting Mum, mum mum nearly every day

which makes my eyes twinkle every time he says it. We are also getting lots of

bub, bub bub and ba ba ba. I gave him a whisk and pot today out of the kitchen

and he thought it was the ants pants banging away like it was a drum. I can

feel very expensive and noisy drum lessons coming on in the future ) Bring

it on!!!!

Cheers

Fiona

Mum to Hunter 10 mths (MDS)