Re: [MDS]

[Guest guest]

,

Congratulations on the birth of Arianna! What a lovely choice of

names. It sounds like you are doing well with a lively crew of dear ones in

your care. May God bless you and your family with much love, health, and

happiness! Take care!

Many Blessings,

Barb Martz

Mom to Jonas (MDS) 2 & 7

>

> Price

> Hi I wanted to tell everyone I have had the baby I was extecting on dec 10

3

> weeks early.She is four weeks old Her name is Arianna Leona Price.Emerson

> has stayed true to his good disposistion inspite of my fears he would

> dislike not being the littlest any more.Emerson amazed us by how well he

> tested with the pt and the ot completely knocking all of are socks off.He

> was the big flirter and had both females singing his praises.The pt and he

> had a disagreement because M wanted to slide down the steps on his rear

and

> she insisted he walk.Our two and a half year old charmer of course kissed

> her to make up for it when he was over being upset with her.He loves his

> sister.I am Emersons mom age two 's mom age nine 's mom age

8

> who has ADHD Im okay not to over whelmed I have been busy and fussed alot

> about if our baby is gaining the proper amount of weight or not.She was

six

> four and took a little too long to reach her birth weigth.Now that she is

> nursing and needing less bottles she is doing much better.I had very

little

> time to do this or read and have not kept up for at least two

months.Thanks

> barb and Pam and all of you I think I got to read what I needed most.

>

>

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

today? http://www.mosaicdownsyndrome.com

> *************************************************

> MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus

> *************************************************

>

[Guest guest]

To ,Angel and the rest of the group-

I totally appreciate were you are coming from - I know

that if showed any signs or had any delays, I

would be on my " soap box " and telling everyone. And

let me tell you, in the beginning I was. I was

actually interviewed locally regarding his condition-

We had big plans - to share our story with the

world...The Oprah show was my goal. But my motherly

instinct has taken over and I need to protect my son.

Maybe you misunderstood me - his aunts and uncles,

grammy and grampas, and our closest adult friends do

know about the MDS. And our bosses - there were so

many days we had to take out of work while I was

pregnant for the level 2 ultrasounds and such- but our

neighbors dont know, the kids dont know and he doesnt

know. Our doctors tell us that is a very rare

case - not only does he have the rare from of DS- (MDS)

but the only reason why we know is because of the

amnio. 99% of the parents who get those results from an

amnio choose to abort. He shows no signs at all and

appears to be " normal " in every realm. So whats a

mother to do -label him forever because of a test

result before birth - or label him for who he is today

and how he acts today. I just hope that all of you are

not offended by our not sharing his MDS with

everyone...WE ARE NOT ASHAMED and we do not think

is any better than any other child afflicted with MDS.

We struggle daily with the MDS label and when the time

is right he will be told. Just imagine how would

feel if he did know - It sets him apart from the

" normal " kids but because he has no signs or delays he

doesnt fit in with the " MDS " kids either. I wouldn't

want him to struggle with the void we feel - it's very

difficult not to fit in. As crazy as it sounds,

sometimes we think it would be easier if he did have

delays or signs - at least then we could have some

peace about the diagnosis. Anyways, let me assure you

that our intentions are not to offend anyone. I just

wanted to bring to light our experience.

Ellen Kugel