Re: We just found out last night

[Guest guest]

Mark and ,

Congratulations on the birth of your daughter!! You have joined a great group

of people. We all have children ranging in ages. My daughter, is 10

years old and an absolutely wonderful child (that is the mom in me bragging!!!)

I know that what you are experiencing may seem like an awful lot right now but

believe me it does get easier especially with that first smile and the first

time she calls you mom and dad.

Take care and I wish you all the best. Please don't hesitate to ask questions

of this group. Amongst all of us, I think we have been through it all.

(mom to MDS 10.5 and Hannah 3.5)

[Guest guest]

Hi Mark and :

I'd like to welcome you the group and say congratulations on the birth of

your baby girl. I know right now you may not feel like celebrating and this

on-line support group is probably the last place you thought you'd find

yourself. Allow yourself to feel the sadness and grief you are experiencing,

but know that these feelings will pass. You will be able to feel joy and

happiness when you look at your little girl and realize that she has a very

bright future ahead of her.

This may not be the path you were expecting to take with your baby, but you

will find that the reality of living with mosaic down syndrome is never as

bad as what you may imagine. Life will go back to normal and while your baby

girl may need early intervention services to help her reach her fullest

potential, know that she will learn to walk and talk and play just like any

other child. She will go to school and have friends. Treat her the way you

would any other baby. Yes there will be challenges along the way, but if

you love and support her and expect great things from her, she won't

disappoint you.

This is a great group of parents that are always willing to answer questions,

share their experiences, give advice, or just listen if you need to vent.

Also feel free to

e-mail me personally if I can answer any questions for you. I have a 7 year

old daughter named , who is in the second grade, goes to dancing

school and gymanstics, is a Brownie girl scout and also wants to join a

soccer team except there is no more room in her busy schedule.

Again, I congratulate you on the birth of your baby girl and I look forward

to hearing more from you.

ann (Mom to , mds 7 yrs old and 11)

[Guest guest]

> Hi everyone,

> I'm not sure if my first intro got through so here is another. My

wife and I recieved the news last night that our week old baby girl

tested positive for MDS. We cried a lot last night. Today we are

reaching out for information and support. We love our baby girl very

much and want to learn everything we can to best care for and support

her. We are first time parents and were ill prepared for this. I

don't know what else to say. I think we are still in shock. Thank you

soo much for this listgroup! We need all the info and support we can

get.

>

> Mark and Flaherty<br clear=all><hr>Get your FREE download

of MSN Explorer at <a

href= " http://explorer.msn.com " >http://explorer.msn.com</a><br></p>

Mark and ,

Welcome to the group. I know exactly how you must be feeling my

husband and I were really upset to find out that our little girl had

MDS when she was 2 weeks old (she is our only child). I felt that I

had been robbed of my perfect little girl and I cried for days.

is now 5 and I now know she really is my perfect little girl and I'm

so glad she's mine. I know it will be difficult for you both but

believe me it will get better soon and you are loving parents so

you're half way there. Have you read the MDS website, it is quite

informative? Have you a name for you little girl yet?

Hang in there! LOL

Gail.

Have you a

[Guest guest]

Dear Mark,

I am sure you are experiencing alot of conflicting emotions right now. You have a new baby, that's great! You do not have a perfect baby, you are grieving that loss. I do want you to know that your baby is more normal than not and that she will accomplish much. She will bring you great joy. For everyone the adjustment time is different. I needed 3 months to bond with my daughter before looking into what mds was all about and what, if anything, needed to be done for her. After 3 months, I decided that since I nor anyone else could predict how well she would develop, to get her and myself involved in an early intervention program. This helped keep her on a "normal" developmental time table. From there it was kindergarten and now we are in the elementary years. She is in a regular class and is doing well. I also have her on an accelerated learning program and she is keeping up with her peers because of the program. There is such a broad range of ability with children who have mds. From what I've read on this listserve, they are doing great, (they also have great parents). There seems to be a common delay though, mostly mild. That delay is in the area of speech acquisition. Talk to her, read to her, sing to her and there is also a program that many parents have used which is called Love and Learning. You can find it at www.loveandlearning.com Also, only because my daughter has benefited from the accelerated learning program and I wish I had known about the organization that provided her with the program, I must mention the NACD. They are a neuroeducational organization that evaluates your child and designs a tailor-made neurodevelopmental program then trains the parent on how to implement the program. Parents who have had their children on the program since birth have seen the greatest results. Many of the young adults who have full blown Downs Syndrome have their highschool diploma and are working on their college degree. Enough of that promo. Just know that there are alot of resources out there and alot of wonderful support on this listserve! Take one day at a time. That's all the grace God gives us, is for the moment. You are in our prayers. Please be encouraged, your daughter is precious.

Sincerely,

Ellen Maulding, mom to Bekah,(mds) and three sibs

We just found out last night

Hi everyone,

I'm not sure if my first intro got through so here is another. My wife and I recieved the news last night that our week old baby girl tested positive for MDS. We cried a lot last night. Today we are reaching out for information and support. We love our baby girl very much and want to learn everything we can to best care for and support her. We are first time parents and were ill prepared for this. I don't know what else to say. I think we are still in shock. Thank you soo much for this listgroup! We need all the info and support we can get.

Mark and FlahertyWon't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com*************************************************NEW MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus*************************************************

[Guest guest]

Welcome Mark and -

You have stumbled into a pretty great supportive group of people. I

remember when I first found out- there was a lot of crying, a whole lot of

denial and some anger. But you know what - is an angel (and a

little devil) She makes my day - when I come home from work and she comes

running to me yelling MAMA! with the biggest smile on her face.

Darlene - Mom to , 2, MDS and 4.

We just found out last night

Hi everyone,

I'm not sure if my first intro got through so here is another. My wife and I

recieved the news last night that our week old baby girl tested positive for

MDS. We cried a lot last night. Today we are reaching out for information

and support. We love our baby girl very much and want to learn everything we

can to best care for and support her. We are first time parents and were ill

prepared for this. I don't know what else to say. I think we are still in

shock. Thank you soo much for this listgroup! We need all the info and

support we can get.

Mark and Flaherty

[Guest guest]

Thanks Gail. Her name is Grace Ellen Flaherty and we love her so much. Thanks for sharing your experience. I can really relate. It gives us so much hope to hear how other parents felt like we do now, when they first found out, but how they have adapted and overcome. Truely, it brings me to tears. Mark and Mel Re: We just found out last night > Hi everyone,> I'm not sure if my first intro got through so here is another. Mywife and I recieved the news last night that our week old baby girltested positive for MDS. We cried a lot last night. Today we arereaching out for information and support. We love our baby girl verymuch and want to learn everything we can to best care for and supporther. We are first time parents and were ill prepared for this. Idon't know what else to say. I think we are still in shock. Thank yousoo much for this listgroup! We need all the info and support we canget.>> Mark and Flaherty<br clear=all><hr>Get your FREE downloadof MSN Explorer at <ahref="http://explorer.msn.com">http://explorer.msn.com</a><br></p>Mark and ,Welcome to the group. I know exactly how you must be feeling myhusband and I were really upset to find out that our little girl hadMDS when she was 2 weeks old (she is our only child). I felt that Ihad been robbed of my perfect little girl and I cried for days. is now 5 and I now know she really is my perfect little girl and I'mso glad she's mine. I know it will be difficult for you both butbelieve me it will get better soon and you are loving parents soyou're half way there. Have you read the MDS website, it is quiteinformative? Have you a name for you little girl yet?Hang in there! LOLGail.Have you aWon't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com*************************************************NEW MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus*************************************************

[Guest guest]

Thank you, Darlene. Much appreciated. Mark and Flaherty parents of Grace, 1 week, MDS RE: We just found out last night Welcome Mark and -You have stumbled into a pretty great supportive group of people. Iremember when I first found out- there was a lot of crying, a whole lot ofdenial and some anger. But you know what - is an angel (and alittle devil) She makes my day - when I come home from work and she comesrunning to me yelling MAMA! with the biggest smile on her face.Darlene - Mom to , 2, MDS and 4.-----Original Message-----From: Mark Flaherty Sent: Wednesday, May 16, 2001 3:22 PMTo: MosaicDS Subject: We just found out last nightHi everyone,I'm not sure if my first intro got through so here is another. My wife and Irecieved the news last night that our week old baby girl tested positive forMDS. We cried a lot last night. Today we are reaching out for informationand support. We love our baby girl very much and want to learn everything wecan to best care for and support her. We are first time parents and were illprepared for this. I don't know what else to say. I think we are still inshock. Thank you soo much for this listgroup! We need all the info andsupport we can get.Mark and Flaherty

[Guest guest]

Thank you so much for the support! I can't seem to read without crying. Thank you so much. Re: We just found out last night Hi Mark and :I'd like to welcome you the group and say congratulations on the birth ofyour baby girl. I know right now you may not feel like celebrating and thison-line support group is probably the last place you thought you'd findyourself. Allow yourself to feel the sadness and grief you are experiencing,but know that these feelings will pass. You will be able to feel joy andhappiness when you look at your little girl and realize that she has a verybright future ahead of her.This may not be the path you were expecting to take with your baby, but youwill find that the reality of living with mosaic down syndrome is never asbad as what you may imagine. Life will go back to normal and while your babygirl may need early intervention services to help her reach her fullestpotential, know that she will learn to walk and talk and play just like anyother child. She will go to school and have friends. Treat her the way youwould any other baby. Yes there will be challenges along the way, but ifyou love and support her and expect great things from her, she won'tdisappoint you.This is a great group of parents that are always willing to answer questions,share their experiences, give advice, or just listen if you need to vent.Also feel free toe-mail me personally if I can answer any questions for you. I have a 7 yearold daughter named , who is in the second grade, goes to dancingschool and gymanstics, is a Brownie girl scout and also wants to join asoccer team except there is no more room in her busy schedule.Again, I congratulate you on the birth of your baby girl and I look forwardto hearing more from you.ann (Mom to , mds 7 yrs old and 11)Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com*************************************************NEW MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus*************************************************

[Guest guest]

Mark and :

Congrats on your beautiful little girl! I know how angry, confused and

sad you may be feeling. Let me tell you first off, it is NOT your

fault!! It took me a long time to stop blaming myself for something I

couldn't have prevented, but it was like going through the steps of

grieving someone in death. First I denied it, then I was angry, then I

felt guilty, I felt I was being punished for being greedy because I

already had 2 boys, but I wanted a girl too. Then I finally accepted it.

Once we found out, I dove into research. I think knowledge is power.

You will find alot of support here. Give yourself time to grieve the

loss of a " perfect " (like any of us is perfect?) child, the loss of your

hopes, but not your dreams. Your expectations may change, but you'll

have new ones.

Sierra is our ray of sunshine, our little miracle baby. She has faced

numerous medical issues, related to her heart, but we wouldn't trade her

for anything. You will learn to love life more, enjoy the simplier

things, be content with small steps, learn to really live. Enjoy your

beautiful angel for who she is and set your hopes high. She will learn

to sit, roll over, stand, walk and more at her own pace, when she is good

and ready; but she will do it. And the sense of pride you will all feel

when she does is immeasurable!! I cannot tell you how attached I am to

my little girl, how much happiness she brings into the room, how she

lights up the place with her smile, her genuine happiness and love. Yes,

she is a great deal of work; but then again, hard work will pay off in

the long run. Aim high and reach for the skies! You'll get there, one

day at a time. Take care,

Kris mom to Sierra 28 mos. and

[Guest guest]

When we found out my son had DS/MDS, we thought our world was ending. I really wasn't sure I could ever be happy again. God is much wiser than us. has brought us boundless joy. He is 17 months old now. I wouldn't trade him for anything. We have three children, two typically abled and one with DS/MDS. is a tremendous blessing to all of us. You will find your Grace to be very aptly named, as she will be a constant reminder of God's grace and love for all of us. So hang in there. You'll get to this point, too. But it's perfectly normal to go through phases of grief, anger, not wanting your child, etc. Your love for her will get you through that and you'll emerge happier, better people than ever before. God bless you.

Beth

We just found out last night

Hi everyone,

I'm not sure if my first intro got through so here is another. My wife and I recieved the news last night that our week old baby girl tested positive for MDS. We cried a lot last night. Today we are reaching out for information and support. We love our baby girl very much and want to learn everything we can to best care for and support her. We are first time parents and were ill prepared for this. I don't know what else to say. I think we are still in shock. Thank you soo much for this listgroup! We need all the info and support we can get.

Mark and FlahertyWon't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com*************************************************NEW MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus*************************************************

[Guest guest]

Dear Mark & , You have found a great place to start looking for information. This group is full of caring and terrific people who can understand when not many others really can. Our son Jonas is now 6 months old. He was 10 days old when we found out he had Down's Syndrome, and 13 days old when we found out it was the Mosaic form. We cried so hard on the evening that we found out that I felt like I was going to burst a blood vessel in my head. I fell asleep crying and woke up in the morning with tears running down my cheeks. Most of my family , parents, brothers, sisters, & friends had nights just about as bad as we did. In the morning I could not wait to get to the Neonatal Intensive Care Unit (Jonas was a preemie) so that I could get my hands on my beautiful child. We had found out in the late evening at home over the phone. The hospital was 60 miles away, and we were too upset to go that night. Once I got to the hospital I practically ran to my child. I could not "scrub in" fast enough, and the minute I was able to hold our perfect miracle in my arms I knew that everything was going to be alright. It has been a really fast 6 1/2 months since he was born. He is perfect and wonderful to us and we feel more blessed with each passing day. We don't know what the future will bring, but we know that it will be filled with love. So far, Jonas is right on with all developmental milestones. He has a heart problem which is only getting better with time and may eventually lead to surgery but it is not necessary right now because he is doing 10 times better than they expected him to do. As I sat in that NICU holding my son that first day we found out, I thought of the verse in Psalm 30:5 "Weeping may endure for a night but joy cometh in the morning". Joy surely did reenter our hearts that morning and it never left again. Keep loving your beautiful girl with all your heart. She came to your lives against the odds for a reason. Time will tell you what that reason is. Hang in there, and let us know how you are both doing. You are all in my prayers tonight! Kisses to your baby girl, what is her name? Barb Martz Mom to Jonas (MDS) 6 1/2 m.o. & 6y.o. We just found out last night Hi everyone, I'm not sure if my first intro got through so here is another. My wife and I recieved the news last night that our week old baby girl tested positive for MDS. We cried a lot last night. Today we are reaching out for information and support. We love our baby girl very much and want to learn everything we can to best care for and support her. We are first time parents and were ill prepared for this. I don't know what else to say. I think we are still in shock. Thank you soo much for this listgroup! We need all the info and support we can get. Mark and FlahertyWon't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com*************************************************NEW MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus*************************************************

[Guest guest]

Thank you . Dad to Grace, mds 1 week Re: We just found out last night Mark and :Congrats on your beautiful little girl! I know how angry, confused andsad you may be feeling. Let me tell you first off, it is NOT yourfault!! It took me a long time to stop blaming myself for something Icouldn't have prevented, but it was like going through the steps ofgrieving someone in death. First I denied it, then I was angry, then Ifelt guilty, I felt I was being punished for being greedy because Ialready had 2 boys, but I wanted a girl too. Then I finally accepted it.Once we found out, I dove into research. I think knowledge is power.You will find alot of support here. Give yourself time to grieve theloss of a "perfect" (like any of us is perfect?) child, the loss of yourhopes, but not your dreams. Your expectations may change, but you'llhave new ones.Sierra is our ray of sunshine, our little miracle baby. She has facednumerous medical issues, related to her heart, but we wouldn't trade herfor anything. You will learn to love life more, enjoy the simplierthings, be content with small steps, learn to really live. Enjoy yourbeautiful angel for who she is and set your hopes high. She will learnto sit, roll over, stand, walk and more at her own pace, when she is goodand ready; but she will do it. And the sense of pride you will all feelwhen she does is immeasurable!! I cannot tell you how attached I am tomy little girl, how much happiness she brings into the room, how shelights up the place with her smile, her genuine happiness and love. Yes,she is a great deal of work; but then again, hard work will pay off inthe long run. Aim high and reach for the skies! You'll get there, oneday at a time. Take care,Kris mom to Sierra 28 mos. and Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com*************************************************NEW MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus*************************************************

[Guest guest]

Thank you Barb Her name is Grace Ellen Flaherty. We love her so much. I have to tell you, you people on this list are so inspiring and compassionate. I am in tears right now, as is my wife. I can't thank you enough for the hope and understanding we have been so freely given here. GOD BLESS YOU! We just found out last night Hi everyone, I'm not sure if my first intro got through so here is another. My wife and I recieved the news last night that our week old baby girl tested positive for MDS. We cried a lot last night. Today we are reaching out for information and support. We love our baby girl very much and want to learn everything we can to best care for and support her. We are first time parents and were ill prepared for this. I don't know what else to say. I think we are still in shock. Thank you soo much for this listgroup! We need all the info and support we can get. Mark and FlahertyWon't you please consider adding your personal story on the MDS website today? ! http://www.mosaicdownsyndrome.com*************************************************NEW MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus*************************************************

[Guest guest]

Dear Mark and ,

Let me first begin by congratulating you on the birth of your precious baby girl. I have a 7 1/2 month old baby girl named Kaelah (MDS) so I can understand your shock at the news but be encouraged that this baby will bring you much joy !! I absolutely don't know what I would do without my little one. I have 4 other children ranging from 20yrs to 3 1/2 yrs. She is such a wonderful blessing to me. I also had no clue that Kaelah had MDS while I was carrying her. You will love this list group as there are so many wonderul people to encourage and uplift. I know it has been a tremendous blessing to me. Let us know the particulars : her name, weight, etc and again Congratulations!! God Bless!!

[Guest guest]

Thank you soo much for this listgroup! We need all the info and support we can get.

Mark:

Yes you do need our support and we know exactly what you are going through. That is why we are all here! I know it is hard right now, but I can promise you that time is of the essence here! Your wonderful new baby girl will truly make the difference! When Karlee was born, I remember thinking all kinds of terrible things and how was I to ever pull through it.

As time passed this beautiful child showed me how wonderful life was for me. She has already done more in her short two years than that I had ever expected of her. I think my husband and I were so uneducated about down syndrome that we expected the worst. Now, we just enjoy every minute with her and let her shine, shine, shine! Your little girl will too, I promise!

I remember thinking, will she ever ask for a toy? Will she understand me?

Will she know I'm her Mom? Let me tell you, not only does she know all this, but she asks to go the Walmart! Go figure! Just remember, we are all here!

Good luck!

Beets, (Mommy to Karlee, 2 mds and a wonderful child!)

[Guest guest]

<P><FONT color=darkslateblue face= " Comic Sans MS " >

Dear Mark and ,</FONT></P>

<P><FONT color=darkslateblue face= " Comic Sans

MS " >Congratulations on the birth of your little

angle. & nbsp; I know how hard it is to get the news, I

did not find out that my son has MTDS until he was 2

1/2 years old. & nbsp; As you get to know everyone in

this group you will find a lot of support and good

advice. & nbsp; I wish you lots of luck and plenty of

joy with her. & nbsp; You will find that she is truly an

angle with lots of love to give you, and I think that

that is the best part of being a parent.</FONT></P>

<P><FONT color=darkslateblue face= " Comic Sans

MS " >Debbie</FONT></P>

<P><FONT color=darkslateblue face= " Comic Sans

MS " >Mother of Tyler (4 MTDS) and Troy (6

ADHD)<BR></P></FONT>

<P> & nbsp; <B><I>Mark Flaherty

& lt;maf@... & gt;</I></B> wrote: <BR>

<BLOCKQUOTE style= " BORDER-LEFT: #1010ff 2px solid;

MARGIN-LEFT: 5px; PADDING-LEFT: 5px " ><BR>

<DIV>Hi everyone,</DIV><BR>

<DIV>I'm not sure if my first intro got through so

here is another. My wife and I recieved the news last

night that our week old baby girl tested positive for

MDS. We cried a lot last night. Today we are reaching

out for information and support. We love our baby girl

very much and want to learn everything we can to best

care for and support her. We are first time parents

and were ill prepared for this. I don't know what else

to say. I think we are still in shock. Thank you soo

much for this listgroup! We need all the info and

support we can get.</DIV><BR>

<DIV> & nbsp;</DIV><BR>

<DIV>Mark and Flaherty<BR><BR></DIV><BR><!--

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[Guest guest]

Dear Mark and

Congratulations! There is no greater joy than the birth of a child

and in time you will realize just how wonderful parenthood can be. I

know right now you are going through probably one of the most

difficult times in your life - but through the grace of God you have

you have found a wonderful group of people to support and encourage

you!

It was only two months ago that my husband and I found out that our

son will be born with MDS. He is expected late June/July. The

emotional turmoil we experienced, the self pity, the hate, the fear -

I can still remember just wanting to push the baby out. If it

weren't for this wonderful group and the MDS website I'm not sure if

we could have handled all the negative feelings. Through their

support, their sharing of news and experiences we came to realize

just how special our son will be. It took a while to mourn the

little boy we thought we were having - but to tell you the truth the

more research I do the more confident I feel and the more we look

forward to having him in our life. I have done a great deal of

research and have discovered some wonderful resources for our son.

There are so many great supportive people out there. It will take

time for you to come to terms with the news but once there - reach

out -and share yourself too! We live in Massachusetts - if you live

close by I'd be more than happy to share with you the wonderful

groups, clinics and resources I have discovered. As parents, we have

all been blessed, you will soon be able to truly believe this-

Best wishes for you and Little Grace

[Guest guest]

I'm not sure if this went so here it is again:

Dear Mark and ,

Congratulations on the birth of your little angle. I know how hard it is to get the news, I did not find out that my son has MTDS until he was 2 1/2 years old. As you get to know everyone in this group you will find a lot of support and good advice. I wish you lots of luck and plenty of joy with her. You will find that she is truly an angle with lots of love to give you, and I think that that is the best part of being a parent.

Debbie

Mother of Tyler (4 MTDS) and Troy (6 ADHD)

[Guest guest]

Hi Mark and , congratulations on the birth of your daughter!

Having learned she has MDS is not a " sentence, " nor has your

life been de-railed onto some dark sidetrack that keeps you from

realizing the hopes and dreams you have for your family. My wife,

Sharon, and I found out several months before our was born that

he had MDS -- and like Misty said in her note, it's just a PS on the

letter of her life. I have wrestled more with my own limitations (and

those of the medical community) than anything with Matt. Looking

back now (he's 6) it's hard to believe how much he's broadened our lives

(and how limited our lives would have remained without him). ly, my

8 year old son is harder to deal with and I worry more about his handling

the future than I do Matt. We didn't so much 'decide' not to treat Matt

differently as he wouldn't let us. Any child you would have comes with

their own set of unique challenges. It's almost like a coin -- the same

characteristic that is a weakness in one situation is a strength in

another.

Sharon and I are both in the medical field and would like to strongly

point out that 1. medicine is an inexact science, and 2. the medical

professionals who have put forth dire, sweeping, definitive statements

and predictions about abilities and quality of life, have always been the

least accurate in our lives. Do your own research because you'll probably

have to educate the specialists (medical or educational) -- and let your

daughter teach you. Please let us know her name and post some

pictures if you

like.

At 02:22 PM 5/16/2001 -0500, you wrote:

Hi everyone,

I'm not sure if my first intro got through so here is another. My wife

and I recieved the news last night that our week old baby girl tested

positive for MDS. We cried a lot last night. Today we are reaching out

for information and support. We love our baby girl very much and want to

learn everything we can to best care for and support her. We are first

time parents and were ill prepared for this. I don't know what else to

say. I think we are still in shock. Thank you soo much for this

listgroup! We need all the info and support we can get.

Mark and Flaherty

Yahoo! Groups

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www.

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

website today?

http://www.mosaicdownsyndrome.com

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[Guest guest]

Mark and ,

Welcome to the group, and welcome to little Grace Ellen! I adore that name!

It was my grandmother's name, and I had chosen the name for a girl with my last pregnancy, but I unfornately miscarried... hmph! My son was diagnosed with MDS when he was 16 months old, quite accidentally too, but at birth he needed surgery for another complication, he also has Hirschsprung's Disease, a bowel disorder, and he couldn't have a bowel movement at all when he was born. I remember the grief I felt as I mourned the happy, healthy child I had imagined for 9 months. It was quite an adjustment! is 8 years old now, and in a special ed. second grade class. As one of the other parents said, gives me less trouble than any of my other kids! ( was my second child of four) He's well mannered, he's content and easy going... he's a joy!

So once again, welcome to the group, and I'm glad you found us! When was diagnosed, there was SOOOO little information to be found about MDS, and absolutely NO support groups for it. This really is a great group!

Congratulations!

Angel

Mom to Tyler 9, 8 (MDS & Hirschsprung's Disease), 6, and Jaeda 5