My SIL is 17 weeks pregnant and she found out today

[malta blue]

that her baby has Down Syndrome.

Is there a forum here that I can refer her to, or does anyone have any links at hand that I can send her?

Thanks DUers

[La Lioness Priyanka]

1. oh no!

:HUG:

[malta blue]

6. She is very sad right now...I don't know what to say

to her.:hug:

[CaliforniaPeggy]

2. My dear malta blue...

Oh, I'm so sorry to hear that...

I cannot help with resources or links...

You could PM LaraMN...her youngest son has Down's Syndrome...



:hug:

[malta blue]

8. Thanks Peggy ...

LaraMN is already on my radar for later.

:hug:

[Midlodemocrat]

3. Welcome to Holland

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 guidebooks and make your wonderful plans.
The Coliseum. The Michelangelo David. The gondolas in Venice.
You 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 different 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 have been there for a while and 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 the wonderful time they had there.
And for the rest of your life, you will say
"Yes, that is where I was supposed to go.
That is what I had planned."

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



by Emily Perl Kingsley,
author of the television movie "Kids Like These" (1987)
and many other children's shows and stories.
She is the mother of a child with Down Syndrome.

[redqueen]

9. that's lovely

[malta blue]

10. Beautiful Midlo.

I sent it to her...it seemed awkward to send but once she gets through the tears I am sure it will bring her some food for thought.
~MB

[Midlodemocrat]

14. When I had BabyMidlo, I was certain when I looked at her that

she had Down Syndrome. It was such a difficult pregnancy and there were some subtle things that just convinced me that she did.

My pediatrician told me that she didn't, but even if she had, it was just a matter of changing your expectations, it's not lifelong sorrow once the baby arrives.

LaraMN knew that Jack had Down Syndrome. My friends knew that Nadilee did. They chose not to terminate and I can't speak for Lara, but I know my friend Jennifer has never regetted it. I sincerely think Lara doesn't either.

[Critters2]

22. That's beautiful!! I'm saving it....for parishioners in these circumstances

and for myself, when I get sad about how life didn't turn out.

Thanks so much for sharing this wisdom!

Critters
in her own private Holland

[lizziegrace]

4. Also

LiberalSailor's son has Down's as well.

:hug:

[malta blue]

11. Check - thanks lizziegrace

I think I knew that but had forgetten.
:hug:

[Midlodemocrat]

5. NADS.org is the National Association for Down Syndrome

Fantastic resource with great information.

[malta blue]

12. Again Midlo - thank you! nt

[Kali]

7. Do you want info on Downs children, or terminating pregnancies?

[malta blue]

13. I am not sure what she is thinking right now....

I would think information on children, but perhaps termination may be an option she is considering.:shrug:

[Kali]

29. kinda seemed like everybody was jumping to one conclusion

where as the whole point of testing was to give full info and options so it occurred to me that that might not be what you were asking.

[ThomCat]

15. Wow. I hope you find some good resources for them.

Good vibes. :hug:

[malta blue]

16. Thanks my friend...

WOW - when it rains in life, it really POURS!

How are you doing today, BTW?:hug:

[ThomCat]

20. I'm not sure yet.

Something is happening and I'm getting antsy. I'm a bit nervous and uncomfortable today. :shrug:

But until my body decided whether or not it's going to beat me up, I'm doing my best to hang in there. :)

[lizziegrace]

21. ...

:(


:hug:

[malta blue]

24. ThomCat

:hug:

I hope you are okay

[VenusRising]

17. I don't have any information, but I DO have vibes and

good thoughts coming her way.

:hug: for you too, malta blue!

[malta blue]

25. Thank you...

:hug:

[skygazer]

18. That's got to be a shock

I don't have any resources but I wish her well. And I will say that one of my favorite co-workers is a young man with Down Syndrome - he is a wonderful guy with a lot of friends and a great family and a fulfilling life.

I like the "Holland" poem - I think it describes my friend well. The world - and certainly my store - would be a lesser place without him.

[malta blue]

26. I will tell MrMB to remind her of individuals

like your co-worker.

Thanks:hi:

[Shine]

19. That's heartbreaking to hear. I'm sorry about this.

Here is a link for an absolutely beautiful book called "Expecting Adam", which tells the autobiographical true story of a couple who discover their unborn child has Downs and their decision to carry him to term. It's one I've also recommended to LaraMN. :hug: It's uplifting, powerful and very deep. :thumbsup:

http://www.amazon.com/Expecting-Adam-Story-Rebirth-Everyday/dp/0425174484

[malta blue]

27. Thank you Shine

:loveya: :hug: :loveya:

I will send her the link.

[Critters2]

23. I'm sorry to hear this, and will keep you SIL and family in my prayers

I've worked with people with Down Syndrome, and, even with the challenges, they can be a great source of joy. They never fully lose the sense of wonder at the world...at least that's been my experience. And I've found them inspiring in that way.


But she will need support and a few of these :hug: :hug:

There are others here with good info about resources.

I wish your family well :hi:

[malta blue]

28. Thanks very much

I know she will need a lot of support from MrMB during this time as she is estranged from their mother.

:hug:

[LaraMN]

30. Hey, sweets...

She probably won't believe it now, but she's a very lucky mom-to-be.
I went through every conceivable emotion after Jack's diagnosis (when I was 18 weeks pregnant.)
It was very difficult for the duration of the pregnancy.

Now, I wouldn't change a thing about him even if I could. That might sound sappy and cliche, but it's true. Having him was probably the best thing that ever happened to me. Midlo is right; I've never regretted having him. I'm not a martyr, our lives aren't "challenging" or "difficult" because of him. He needs some special services, and I'm probably a bit more vigilant about his health than my older two kids, but he's had no major medical problems and was probably the healthiest of all my infants.

He's SO damn funny, and SO damn clever, I don't think I COULD have many regrets, or much sympathy for him. He doesn't need me to.

If she decides to continue the pregnancy, probably the best thing you can do for your SIL is to listen to her, encourage her to network with other families of kids with Downs, and most of all, CELEBRATE her baby. Be excited for his/her impending arrival. Help her enjoy all the things about being pregnant and having a new child that any expectant woman would. Make sure she knows how much her baby is loved and accepted by those who matter. Her baby will be a CHILD, not a condition; it's hard to see past the diagnosis when you don't have a baby to hold yet. Things feel different when the little sprout arrives.

PM me if you want to chat or pass along my email to her. I'd be happy to share my experiences.

[malta blue]

32. Thanks Lara!

I was going to track you down this evening. I will pass your post along to her. MrMB says she is just crying right now. She has had several miscarriages in the past and this news has had a profound impact on her at this point. I will most certainly try and follow all your suggestions as well as pass them along.
:hug:
oh - and Lara...
:yourock:

[LaraMN]

35. Send her my best.

I cried, yelled, kicked things, cursed fate and every conceivable deity, was heartbroken, pissed as hell, and everything imaginable in the days after I found out Jack had Downs. It's all normal and perfectly healthy. The diagnosis is very hard to digest. The thing is- it's a diagnosis; not a window into what your child will *really* be like. No test and no person can tell you that.

:hug:

[Debi]

34. I knew you'd say it better than me!

Debi Jr. is a dream come true (and I know he would not be who he is without the Spina Bifida and MR). I also cannot imagine my life any other way. :hug: You are such a great force in this world!!!

Jack is a luckly little devil :evilgrin:

[Debi]

31. I wish your SIL and your family the best

take a deep breath as this is just a new adventure.

People with disabilities are still great people who can do great things - they love, hurt, give, take just like all the rest of us (I'm not preaching, unfortunately it sounds like it I'm sorry for that).

:hug:

Good luck to all.

[malta blue]

33. Thanks for the reminder Debi!

:hug:

[MsKandice01]

36. Are they positive that the baby has Downs??

Did she have an amnio? The routine Down Syndrome test can give a lot of false positives.

Either way, I would suggest to her that she join a messageboard for women who are pregnant with babies with Downs Syndrome. Just being able to communicate with others in your same situation can be a huge comfort.

Best of luck to her.

[malta blue]

37. I have not spoken with her directly, only MrMB has

to this point.

Thanks :)

[GreenPartyVoter]

38. I will send out mega-vibes their way *hugs*

[rug]

39. You might post at this forum:

http://www.democraticunderground.com/discuss/duboard.php?az=show_topics&forum=250