RE: Support

[Guest guest]

Not to belittle your feelings in anyway...but I think every one of us here

understands what you're feeling and going through to some degree. Many of us

didn't know as early as you, my son was 16 mos old, and delayed in several

areas, and I couldn't get anyone to hear me... finally was diagnosed

" accidentally " when I took him to MY genetics appt with me. But even then...

you

have to " grieve " the loss of that baby you imagined...the life you imagined

for them, and comes to terms with the realities of the child you do have.

You have to do what you feel comfortable with. I remember feeling obligated

to explain it to strangers, every time he behaved " strangely " or

" differently " ...and one day I was just so angry with myself for doing that... I

realized

I don't " owe " anyone an explanation!

I'm in the " completely open " camp... MDS is rare, and most people have never

heard of it, and I love now to explain it to people...to spread the word

about it...but its completely understandable that you feel fragile right now,

and that is completely normal, so don't ever feel badly about that...it sounds

like you're coming to terms with everything very well.

We're all here for you!

~~Angel~~

Mom to 12 Mosaic Down Syndrome/Hirschsprung's Disease

Lance 16, Tyler 13, 10, Jaeda 9

and Shayne 3

[Guest guest]

Every feeling/emotion you are experiencing right now is valid. You feel

what you feel and you are coping in the way(s) you know how. God has given

you a beautiful, wonderful gift. I agree with the person who said you will

first grieve for the child you didn't have -- the one you " expected " to

have. Then, you will be able to enjoy the child you do have. Hang in

there.

Support

My name is , mother of Trey, 6 weeks today, diagnosed with MDS. I

also have a seven year old daughter. I need some support, and advice

from those of you who are more experienced with MDS than I am. What do

you say to people who asked about your baby whwn he was a newborn? Did

you tell everyone about his condition? If so, what did you say? I am

getting ready to go back to work and will be faced with many questions,

all in good faith. However, I do not know if I am emotianally ready to

start answering questions. I was not aware that my baby was going to

be born with MDS.It has been very hard for me these past few weeks, and

with my family's support and God I have been able to move on and

embrace my child whom I am absolutely crazy about. Please help, I need

some advice.

Become a member of IMDSA today at http://www.imdsa.com

<http://www.imdsa.com>

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

Contact IMDSA Today at:

IMDSA~PO Box 1052~lin,TX~77856~USA~1-

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

[Guest guest]

,

My son is 9 months so I just recently experienced your anxiety. It's

okay to cry. I remember doing A LOT of crying. And then I wiped my

eyes, took in a deep breath and moved on. I opened up every book and

website I could find on DS, met with several families with DS children

and the best thing of all . . . I joined this support group.

I agree with Angel when it comes to talking about MDS. I love

explaining to people what my son has. I consider him a blessing. He's

rare and I have him. Like my husband said " Everybody gets to raise a

" normal " child. We get to raise a " special " child. How many can say

that! " I was very honest with all of our family and friends. It wasn't

hard for all of them to fall in love with him. After you hold him for

two minutes, your whooped. He has a smile that can warm the coldest

hearts. Everytime we walk into a room, someone is fighting to hold him.

After you're done grieving, you sit back and realize everything is okay.

Just last night, both my boys were sitting in the front room rolling the

ball back to one another and laughing. I smiled and grabbed my camera.

I just had to take a picture of both my normal boys doing normal boy

things.

There is light at the end of the tunnel. Hang in there.

Krysten

mom to 9 months (MDS)

and 2-1/2

Support

My name is , mother of Trey, 6 weeks today, diagnosed with MDS. I

also have a seven year old daughter. I need some support, and advice

from those of you who are more experienced with MDS than I am. What do

you say to people who asked about your baby whwn he was a newborn? Did

you tell everyone about his condition? If so, what did you say? I am

getting ready to go back to work and will be faced with many questions,

all in good faith. However, I do not know if I am emotianally ready to

start answering questions. I was not aware that my baby was going to

be born with MDS.It has been very hard for me these past few weeks, and

with my family's support and God I have been able to move on and

embrace my child whom I am absolutely crazy about. Please help, I need

some advice.

Become a member of IMDSA today at http://www.imdsa.com

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

Contact IMDSA Today at:

IMDSA~PO Box 1052~lin,TX~77856~USA~1-

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

[Guest guest]

Hi ,

First of all - congratulations on the new addition to your family.

As far as what to tell everyone, I think you should do what ever makes you

comfortable. You can tell everyone or you don't have to tell anyone. I don't

think you should feel obligated to do things either way. My grandson Adam was

diagnosed at one day old. My daughters decision was to only tell the immediate

family. Adam is three now and she has basicly stuck to that. She has included

a few of her close friends and a few of my close friends know but that is about

it. Adam doesn't really have any noticable features of DS so if we don't tell

anyone, they don't know. Above all, do what make you feel comfortable. Some

people need to talk about things (like me) and some people feel better keeping

things close to home (like my daughter). Mostly, make sure you enjoy your very

special new son.

Donna - gram to Adam 3 mds and Skylar almost 3

lindacarr06 wrote:

My name is , mother of Trey, 6 weeks today, diagnosed with MDS. I

also have a seven year old daughter. I need some support, and advice

from those of you who are more experienced with MDS than I am. What do

you say to people who asked about your baby whwn he was a newborn? Did

you tell everyone about his condition? If so, what did you say? I am

getting ready to go back to work and will be faced with many questions,

all in good faith. However, I do not know if I am emotianally ready to

start answering questions. I was not aware that my baby was going to

be born with MDS.It has been very hard for me these past few weeks, and

with my family's support and God I have been able to move on and

embrace my child whom I am absolutely crazy about. Please help, I need

some advice.

Become a member of IMDSA today at http://www.imdsa.com

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

Contact IMDSA Today at:

IMDSA~PO Box 1052~lin,TX~77856~USA~1-

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

[Guest guest]

Hi ,

First of all, congratulations on your new baby! I'm sure you are going through

tons of emotions right now...been there, done that. It does get better. The

question of if you should tell is really individual. WE told all our family,and

our church family too. Other than that, we didn't spread it around. Mahrya is

now 8 years old and going into 3rd grade in the fall. She has done quite well,

meeting all her developmental milestone on time, such as crawling by 8 months,

walking at 13 months ect. She does have delays, but these do not define who she

is. In school at this point she is reading at grade level, can add and subtract

using the " touch math " method and is loved by everyone in the school, faculty

and students alike. I tell you all these things so you can see that this is not

a horrid thing and many of these kids do quite well. Of course some kids do not

develop as fast, and others are ahead of my daughter. Much like all kids,

everyone has thier strenghths and

weaknesses. Have you gotten in touch with an early childhood intervention

group? We started therepy when Mahrya was 6 weeks old. For us it was mostly

monitering her and giving suggestions to us to help her keep developing on

target. We found it very helpful to have this help. Enjoy your baby, treat him

as you would any other child and don't expect less of him. We accept Mahrya's

limitations, but never underestimate what you child will do. Ask any questions

here as someone has been bound to deal with what you are wondering about.

Luanne mom to Mahrya 8 mds, Ben 10, Alan 17, Sandy 19, Steve 21, Dan 22

lindacarr06 wrote:

My name is , mother of Trey, 6 weeks today, diagnosed with MDS. I

also have a seven year old daughter. I need some support, and advice

from those of you who are more experienced with MDS than I am. What do

you say to people who asked about your baby whwn he was a newborn? Did

you tell everyone about his condition? If so, what did you say? I am

getting ready to go back to work and will be faced with many questions,

all in good faith. However, I do not know if I am emotianally ready to

start answering questions. I was not aware that my baby was going to

be born with MDS.It has been very hard for me these past few weeks, and

with my family's support and God I have been able to move on and

embrace my child whom I am absolutely crazy about. Please help, I need

some advice.

Become a member of IMDSA today at http://www.imdsa.com

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

Contact IMDSA Today at:

IMDSA~PO Box 1052~lin,TX~77856~USA~1-

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

[Guest guest]

Congratulations on your new little one!!! How exciting to have another child.

You have found the right spot for asking many questions reagrding MDS. It is

fine to be overwhelmed, we all have been. First, and foremost, enjoy your

newest blessing. He is a special gift given to you. You are doing good by

finding out as much as you can to be prepared to answer as many questions that

are given to you and that you have yourself.

If you are also interested, you can join IMDSA, International Mosaic Down

Syndrome Association, by going to http://imdsa.com The membership area is

located in the information area. By being a member, you will recieve our

quartlerly newsletter, discounts to IMDSA sponsored events and items, such as

our Access to Care books, which describe the special services offered in your

particular state, and access to our online chats with various experts. If you

have any further questions, please feel free to contact me at

gungoggie@...

Sincerely,

Irene Gunnels

IMDSA Membership Chairperson

lindacarr06 wrote:

My name is , mother of Trey, 6 weeks today, diagnosed with MDS. I

also have a seven year old daughter. I need some support, and advice

from those of you who are more experienced with MDS than I am. What do

you say to people who asked about your baby whwn he was a newborn? Did

you tell everyone about his condition? If so, what did you say? I am

getting ready to go back to work and will be faced with many questions,

all in good faith. However, I do not know if I am emotianally ready to

start answering questions. I was not aware that my baby was going to

be born with MDS.It has been very hard for me these past few weeks, and

with my family's support and God I have been able to move on and

embrace my child whom I am absolutely crazy about. Please help, I need

some advice.

Become a member of IMDSA today at http://www.imdsa.com

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

Contact IMDSA Today at:

IMDSA~PO Box 1052~lin,TX~77856~USA~1-

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

[Guest guest]

...you have discovered a wonderful resource with this group.

congratulations on your wonderful baby!!. Feel all the emotions..that is

normal...it is so ok to cry. But then, as my 17 year old son said.. " I don't

know why we cried? " Sydney is now 28 months and we were told when she was about

four hours old. It was like we had been hit by a bulldozer..and almost

immediately I began to think..My God..I have to help her to be the best that she

can...and also I had to find out " What the heck is Mosaic Down Sydnrome? " In

the whole huge scope of things, not many know about it never mind even heard of

it. None of Sydney's therapists have ever encountered it and some have been

therapists for 25 years!. The doctors have very little info so it is up to us

moms, dads, grandparents, etc to dig a delve and teach others of this amazing

task we have been given.

I can tell you this....I have thoroughly embraced my little angel and I can not

imagine my life without her. In fact, I think my life might even border dull if

she had not graced us with her presence.

We told our closests friends and family and those that we thought would not

judge her. Every single person she has touched adores her. She has a charm and

warmth not encountered often. She also knows what to do to makes us all laugh.

Her playgroup director says she keeps everyone in stitches.

I remeber those days of not knowing what to expect or think. But I did have

tremendouse faith that things would be ok. When she was born and my friend who

is a cardiac intensive care pediatric nurse at Boston Children's Hospital was

told by me through tears and gulps of her condition. She embraced me and said

" ..she will be just fine..you will see. " She was so right. My friends

all told us that she picked the right parents. They seemed to know something we

did not. We know it now though.

It is all this gray area that creates your fears. Lean on us and ask tons of

questions. You will be very surprised by the answers. I really believe these

kids are sent to us to teach how to truly and purely love.

God Bless you, your little one and your family.

Barrette CN

lindacarr06 wrote:

My name is , mother of Trey, 6 weeks today, diagnosed with MDS. I

also have a seven year old daughter. I need some support, and advice

from those of you who are more experienced with MDS than I am. What do

you say to people who asked about your baby whwn he was a newborn? Did

you tell everyone about his condition? If so, what did you say? I am

getting ready to go back to work and will be faced with many questions,

all in good faith. However, I do not know if I am emotianally ready to

start answering questions. I was not aware that my baby was going to

be born with MDS.It has been very hard for me these past few weeks, and

with my family's support and God I have been able to move on and

embrace my child whom I am absolutely crazy about. Please help, I need

some advice.

Become a member of IMDSA today at http://www.imdsa.com

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

Contact IMDSA Today at:

IMDSA~PO Box 1052~lin,TX~77856~USA~1-

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

[Guest guest]

Luanne, Thank you for your support, personal experiences, and for really lifting

my spirits. Although I am aware all children develop at different levels it is

good to hear the positive experiences and milestones your daughter has

surpassed. Can you tell me what her percentage of down and normal cells was?

In addition, although the first weeks were rough, with God's help everyday is

getting easier for me. It is an amazing feeling to see my son look at me- he

truly is a blessing and I love him very much.

Luanne Eckert wrote:

Hi ,

First of all, congratulations on your new baby! I'm sure you are going through

tons of emotions right now...been there, done that. It does get better. The

question of if you should tell is really individual. WE told all our family,and

our church family too. Other than that, we didn't spread it around. Mahrya is

now 8 years old and going into 3rd grade in the fall. She has done quite well,

meeting all her developmental milestone on time, such as crawling by 8 months,

walking at 13 months ect. She does have delays, but these do not define who she

is. In school at this point she is reading at grade level, can add and subtract

using the " touch math " method and is loved by everyone in the school, faculty

and students alike. I tell you all these things so you can see that this is not

a horrid thing and many of these kids do quite well. Of course some kids do not

develop as fast, and others are ahead of my daughter. Much like all kids,

everyone has thier strenghths and

weaknesses. Have you gotten in touch with an early childhood intervention

group? We started therepy when Mahrya was 6 weeks old. For us it was mostly

monitering her and giving suggestions to us to help her keep developing on

target. We found it very helpful to have this help. Enjoy your baby, treat him

as you would any other child and don't expect less of him. We accept Mahrya's

limitations, but never underestimate what you child will do. Ask any questions

here as someone has been bound to deal with what you are wondering about.

Luanne mom to Mahrya 8 mds, Ben 10, Alan 17, Sandy 19, Steve 21, Dan 22

lindacarr06 wrote:

My name is , mother of Trey, 6 weeks today, diagnosed with MDS. I

also have a seven year old daughter. I need some support, and advice

from those of you who are more experienced with MDS than I am. What do

you say to people who asked about your baby whwn he was a newborn? Did

you tell everyone about his condition? If so, what did you say? I am

getting ready to go back to work and will be faced with many questions,

all in good faith. However, I do not know if I am emotianally ready to

start answering questions. I was not aware that my baby was going to

be born with MDS.It has been very hard for me these past few weeks, and

with my family's support and God I have been able to move on and

embrace my child whom I am absolutely crazy about. Please help, I need

some advice.

Become a member of IMDSA today at http://www.imdsa.com

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

Contact IMDSA Today at:

IMDSA~PO Box 1052~lin,TX~77856~USA~1-

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

[Guest guest]

,

Mahrya was diagnosed at about 2 weeks old through a blood test which showed 30%

of her blood cells had the extra chromosome and 70 were normal. Please keep in

mind though that blood percentages can not tell you how your child will do. The

percentage can be different from tissue to tissue in the body. When we had he

cheek swap done looking at skin cells it did give us the same percentage. There

are some people in this group that have higher percentages than Mahrya and do

better accademically. But we are very pleased with her progress as she

continues to grow and learn. She is above all a very sweet girl, with a very

active imagination who is forever talking about marrying prince charming and

going to the ball. My husband is a Lutheran pastor, so we get invited to a lot

of wedding receptions and Mahrya absolutely loves to go and dance all night

long. She's a pretty good dancer too! Well, it is another HOT day here in WI

and the kids are begging to go to the beach. Mahrya is

learning to swim on her own this summer, so we go to the beach as often as

possible.

Luanne

Carrillo wrote:

Luanne, Thank you for your support, personal experiences, and for really lifting

my spirits. Although I am aware all children develop at different levels it is

good to hear the positive experiences and milestones your daughter has

surpassed. Can you tell me what her percentage of down and normal cells was?

In addition, although the first weeks were rough, with God's help everyday is

getting easier for me. It is an amazing feeling to see my son look at me- he

truly is a blessing and I love him very much.

__________________________________________________