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12-04-2012 at 9:49 AM
papillonlo...
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Anyone expecting a ds baby?

I am devastated and have 4 months to go before I deliver. How are you coping? I feel like I'm going deeper and deeper into depression.

 
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12-04-2012 at 9:56 AM
Mr&MrsMTA
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If you dont mind me asking....what tests did you take to discover the baby was DS. I am too early along, but DS and autism run in my DH side well his one sister mainly. So DH and I are going to be looking/testing very closely and then make a decision on what we would like to do.
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12-04-2012 at 9:56 AM
tmsgrl
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You are doing the right thing by reaching out on here.  There is also a Special Needs board that might give you some comfort.
 
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12-04-2012 at 9:58 AM
MotherMayE...
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papillonlover:

I am devastated and have 4 months to go before I deliver. How are you coping? I feel like I'm going deeper and deeper into depression.

 

I have seen other DS mom's to be on TB and they seem like the most awesome women ever. I have even followed links back to a few of their blogs and just found more awesomeness. There seems to be a nice network of blogging DS mom's. I am sure one will pop up and give you some great info and support. Before I found TB, I was a regular reader at Kelle Hampton's blog (start here: http://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html) but I admit that she's not really put the effort in lately to deliver the same kind of thoughtful posts that used to draw me back again and again. I wish I had more for you, but I am not a DS mom.


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12-04-2012 at 10:02 AM
papillonlo...
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I had the materinty 21 test. I opted out of the amnio but the cardiologist told me he's also confident the baby has ds.
 
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12-04-2012 at 10:09 AM
asibilrud
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My baby has a calcium deposit in his heart and I was told it was a soft marker for DS. While waiting for my results, I would have people tell me "its God's will" "God chose you" and "you will love him just the same."

My results ended up coming back negative so I can only empathize with you, but just know that you are human and have human thoughts. When people would offer their "words of encouragement" it always made me feel worse for having real human emotions. 

I can only imagine that it is a difficult time for you. Find comfort in your SO and family and don't keep things bottled up. I think you would greatly benefit from talking to a counselor. My first cousin has severe downs and my aunt has told me before that when he was born, she didn't even love him. Since then, she has opened her own "boarding school" for severe DS cases and rallies for funding for DS research. 

He is now 28 years old and is such an important aspect of our family. He cracks us up and is truly the most loving and sincere person I have EVER met in my whole life. I hope you find peace in this trying time. 

 
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12-04-2012 at 10:10 AM
asibilrud
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Mr&MrsMTA:
If you dont mind me asking....what tests did you take to discover the baby was DS. I am too early along, but DS and autism run in my DH side well his one sister mainly. So DH and I are going to be looking/testing very closely and then make a decision on what we would like to do.

MaterniT21 is not dangerous for baby because it only takes a sample of the mother's blood and its 99.6% accurate

 
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12-04-2012 at 10:35 AM
Ashleymari...
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This baby will be your child, you will love them none the less. You would be surprised what the human heart is capable of. If you do not mind me asking how old are you?
 
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12-04-2012 at 10:38 AM
kchoi
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my oldest son has Ds and what you're feeling is completely normal.  hopefully seeing the baby and holding the baby in your arms will help ease your pain and loss of that typical child you always envisioned.  i'd look for a local Down syndrome support group.  they have got a wealth of information and can most likely link you up with a few other expectant moms in your area.  you can also see if you can meet with parents who are already parents to children with Ds.  hang in there it gets better!!!
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12-04-2012 at 11:13 AM
papillonlo...
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34. My husband is 30.
 
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12-04-2012 at 11:55 AM
jane.says
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I am so sorry you're feeling this way and going through this. I will second another person's recommendation of this blog post and overall blog:

http://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html

I have been reading her blog since her daughter was born and find her to be an incredibly inspiring woman. I hope you're able to find some peace as you prepare for the birth of your baby.
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12-04-2012 at 11:58 AM
flerlgirl
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I am not, but my SIL has a 7-year-old with DS. While I wouldn't say her life has been easy, my niece is so full of joy and life that I wouldn't change a single thing about her. She loves people, loves hugs, loves to give presents, and loves to help Mommy. I would absolutely look into support groups and find fellow moms who are going through the same thing. I'd be glad to PM you my SIL's number if you want to talk to her about what she went through. 
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12-04-2012 at 12:03 PM
magnoliabl...
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My cousin's son has DS and they didn't know he had it until he was born. It was quite the shock to her and cried when they told her.

However, he has turned out to be the love of her life, and everyone else's. She and her husband were told that if they ever had another child, they had a 50/50 chance of having another DS child. Guess what? They chose to have another baby. They said they were SO in love with their ds child, that having another would only be a blessing (if that was the case). They now have 2 beautiful sons- own with down's, one without.

Find some support groups and go talk to a counselor. Your feelings are perfectly normal!

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12-04-2012 at 12:03 PM
sourpatchk...
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We aren't doing testing so I wouldn't know if we are or not, but kellehampton.com is a good read and very popular.

Also, my interwebz friend has a baby with DS. I remember when she found out and how devastated she was - this is her blog, you can start here: http://fortysevenblog.wordpress.com/2012/08/03/hello-world/

I'm sure if you contacted her she would be able to talk to you about what you are going through and really be a help to you.
Braden (7.25.10) & Nolan (EDD 5.11.13)  
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12-04-2012 at 12:54 PM
Halen0804
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I can only empathize (sp?) with you, but I agree with the PP's who said you are doing exactly what you need to be doing by reaching out for support.  You have a right to feel whatever you feel, but it's great that you are trying to find a way to deal with your feelings of unhappiness.  I wish I could offer more than words of encouragement or support. 
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12-04-2012 at 1:07 PM
soontobeah...
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Hi! You probably don't want to hear this right now, but Welcome to the club!! I have a daughter who is 3 who had Ds.

There is a wonderful support group over on babycenter.com for Ds pregnancy and the Ds board is wonderful too! I belong to both groups and there are some awesome moms and dads over there.

I can promise you life seems like it will be so hard right now but after your baby is here and in your arms and you get to know him you will wonder why you were ever sad about it. I know b/c that is what happened to me and EVERY single parent of a child with Ds I have met!!

Remember he is still the baby you wanted and loved before you got the diagnosis, now he is just sporting something extra!
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12-04-2012 at 1:27 PM
watermelle...
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Mr&MrsMTA:
If you dont mind me asking....what tests did you take to discover the baby was DS. I am too early along, but DS and autism run in my DH side well his one sister mainly. So DH and I are going to be looking/testing very closely and then make a decision on what we would like to do.

there is no way to know until the baby is born and older if he/she will have autism
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12-04-2012 at 1:55 PM
mrsmcdonal...
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While finding out your LO has Down's is difficult, luckily, it's not the end of the world. I think it's natural to have a lot of feelings about it, as you adjust to becoming a special needs mom. There are a lot of supports available - they key is reaching out for them. The National Down Syndrome Society might be a good place to start - it's the national organization, and they might be able to link you to local supports. I'm sure Chicago has a lot available.

My godson has Down's - he's 12 years old now. While there were some challenges, there isn't anything that his parents would change about him. He goes to regular school, has friends, does soccer and other sports. He is one of the most lovable, funny, friendly, sweet kids you could ever meet.

A friend found out her LO has Down's after she delivered. Here is a link to her blog:

 http://www.carriewithchildren.com/2012/10/down-syndrome-myths-truths.html

Her DD is a true joy - she can light up a room with her personality.

Good luck. 
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12-04-2012 at 3:04 PM
Ballet513
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WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
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12-04-2012 at 3:55 PM
JuliaSugar...
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I would definitely second PP's suggestion of contacting your local Down Syndrome Guild- they will have great resources and can hopefully help you meet other parents who have been through what you are going through.

 Another blog I think is great is Our Unexpected Journey: http://wwwourunexpectedjourney.blogspot.com/

 Last, be kind to yourself and let yourself feel whatever it is you are feeling. 

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12-04-2012 at 4:46 PM
spoilme1
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I don't have much exp. myself (my BIL has a severe mental disability and he is a joy in our family) with this but I just wanted to share my friend's blog with you. Her and her husband are very young (in their early 20s) and their baby girl was born with Ds in Sept. Her story just brings tears to my eyes and her strength is inspiring to me. 

http://ournormalredefined.blogspot.com/2012_10_01_archive.html

I hope her story brings you some comfort. I wish you the very best in this difficult situation.
 
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12-04-2012 at 7:25 PM
daylights1
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It must be really difficult to find out that your child will be born with a disability.  I don't have any experience.  I do know that the moms on the special needs board are amazing.  

Also, here is a beautiful video that I love made by Josh a 19-y-o with DS and his sister Grace.  

https://www.youtube.com/watch?v=DbzZOI2-iho  
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12-04-2012 at 7:56 PM
MotherMayE...
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magnoliablossom00:
She and her husband were told that if they ever had another child, they had a 50/50 chance of having another DS child.

 

This is not true.

In general, for women under 35 who have had one child with Down syndrome, the chance of having another baby with Down syndrome is 1 percent. 

 
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12-04-2012 at 8:49 PM
pandabear1...
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I dont have experience with DS but my DD1 was born with a brain malformation. Shes a year old and I still struggle and am still grieving and accepting it. It will be a long road but you will later see that you would not change a thing about them. I found out too when I was pregnant and it ruined my pregnancy. I was so depressed because I had no idea what would happen to her and if she would survive delivery. The unknown is the scariest. Once he/she is here it wont even matter anymore. You wont see them as having a diagnosis you will just see your beautiful baby. I agree with talking to the SN board and there are several support groups on FB, diagnosis specific and general. Here is a good read about two adopted DS kids http://pudgeandzippy.blogspot.com/
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12-04-2012 at 10:28 PM
reason00
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A couple of months back I took my son for a ride on the train. Upon arriving at a  stop, along came this little boy and his mom.

He had down's syndrome. 

He almost made me cry. Not because of his inability, but because he was so lovely. So cute. So sweet. He, too, deserves a chance at life, and he had a wonderful mom.

I'm sure it's not easy to come to terms with this, but this child will need you and love you unconditionally like any other. You will get smiles, and hugs, and kisses, and birthday cards like any other mom.

Good luck.

 
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12-07-2012 at 8:08 AM
goldenleav...
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It's okay to be sad! Getting a prenatal diagnosis is hard you don't have a baby to reassure you that everything will be okay.

My daughter is almost 10 months old and has Down syndrome. We found out at 18 weeks. She is simply amazing and I wouldn't change a single thing about her! I'd wager that you will eventually feel the same way but allow yourself time to get there.

Hugs! I have a blog, as do many other DS moms. Www.meetinglauren.blogspot.com
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12-07-2012 at 2:24 PM
soontobeah...
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I second checking out http://pudgeandzippy.blogspot.com/ . This is one of the funniest blogs I have read. EVERY time I read this blog I get a good laugh, she is a great writer and those 2 are just so cute!
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12-19-2012 at 11:59 AM
nyki06
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We do not have a ds baby but my daughter (who is now almost 2) was born with something called hip dysplasia. It's not as severe of a disability and can eventually be fixed, but finding out that your little baby isn't "perfect" is a really hard thing to cope with. While it seemed like everyone else was enjoying their baby's first year of life my daughter was in a brace 24/7 and couldn't even have baths (just sponge baths). We would go out and people in the stores would say things like "What happened to her?" in a tone like I wasn't watching her and she got hurt. We were constantly at the doctor and now she is out of the brace but we are awaiting an unavoidable surgery within the next two years that will require a body cast. 

 While I was going through the thick of her hip dysplasia stuff my husband and I decided to look into foster care/adoption. Once we were faced with the fact that there are bad parents out there it made me appreciate SO much more that my daughter was born into our family where she would have someone to take her to doctors appointments, get her the treatment she needs, and make sure that she is loved through the process. If it wasn't her and was one of the kids who's parents were on drugs or were just neglectful they wouldn't have access to the things that she does, so in a way I became glad that it was my kid who ended up with it and not someone else. My point is that it sounds like your child is so lucky to have you. To have someone who will take care of them, take them to dr's appointments, deal with the special things that they need that the other kids don't, etc. I promise you will find so much joy even in the midst of what will possibly feel like constant chaos. If you have sad days where you have to live in the reality of your child being different, know that that's normal and it is definitely a grieving process.  I would suggest finding a support system of other parents with kids with disabilities. I'm in one on facebook and it's really helpful. 

Good luck with everything!  
Zoe Jane- 2 years Marley Virginia 4-2-13 
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