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Forum
-> Children's Health
amother
Seafoam
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Fri, Sep 14 2018, 4:44 am
Please, I need chizuk. I know it will be ok and this is the gift Hashem gave us but right now I’m alone in the hospital room with her, crying and trying to process this. I need your help and support.
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singleagain
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Fri, Sep 14 2018, 4:48 am
I have no personal experience, no words of chizzuk, but as a practical matter, if your in NYC call Ohel's Bais Ezra. This is exactly the population they help. They have so many wonderful services and programs.
https://www.ohelfamily.org/?q=.....rview
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happyone
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Fri, Sep 14 2018, 4:50 am
Hashem should give you the koach you need. If you are in the tri state area, please reach out to Rabbi Boruch Rabinowitz. Hes a tremendous source of support! Hugs and more hugs. Please join the special needs forum when you are ready.
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momX4
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Fri, Sep 14 2018, 4:51 am
This baby should be a source of nachas and brocha for your family.
There is alot of help out there. Please take advantage of it.
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Jeanette
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Fri, Sep 14 2018, 4:53 am
Mazel tov! I have a daughter with DS and she is the biggest joy and bracha to our family.
In the hospital they will set you up with an appointment with early intervention to get services for your child right away.
HASC has amazing family support services in Brooklyn.
If you are on Facebook look up "Jewish parents of children with DS." It's an incredibly supportive group.
I know it's a real journey ahead but you are in for joy and nachas you never knew was possible. Feel free to PM if you need more support.
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Iymnok
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Fri, Sep 14 2018, 4:54 am
Children with Down’s syndrome are some of the happiest and most loving kids I’ve met.
Does she have other health issues?
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amother
Bisque
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Fri, Sep 14 2018, 5:10 am
God bless you both, you should have lots of nachat from her.
When you start to worry, make an effort to use your head less and your heart more.
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amother
Lilac
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Fri, Sep 14 2018, 5:17 am
I can't speak from experience as a mother as I don't have children yet. I remember my mother telling me as she got older how difficult it seemed at the beginning and that it's important to develop a support system of family, friends, and- if need be- those in a similar situation. It's a matter of personal preference as some people are exceptionally private and don't need an outside support group.
As a sister of a child with Down syndrome (she's actually already an adult as she's in her twenties-- YIKES!!!), I can tell you what an incredible blessing she has been in my life. A lot of who I am as a person today is because of her influence in my life. It's not always easy though-- my husband is still awkward and uncomfortable around her. Some people seem to have a natural knack, and others don't. I'm giving it time... but know that I can't imagine my life without her.
Be prepared for the stares and comments though. Some well intentioned but ill speaking people may surprise you with their insensitivity and you'll be vulnerable to it.
Wishing you- and your little one- all the very best!
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amother
Lemon
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Fri, Sep 14 2018, 5:33 am
I grew up with an aunt with ds. We live her to pieces. She is pure love and kindness and joy.
She was smart, went to a mainstream school, later had a job and proforma well.
(My husbands first cousin too!)
Dress her/him up cute and treat him/her like a normal baby! My grandmother always dressed her in the cutest clothes. She was always the most put together kid on school photos. And she has lots of friends. The BIGGEST birthday parties every year . No kidding.
A while ago, I found out that my parents had put their baby, my younger sister with ds up for adoption some 26 years ago.
I can tell you, I am still resentful. I feel cheated out of the experience. I was very close to my aunt growing up and would have loved to grow up with my sister.
My aunt is very old and in a home at this point with dimentia. She is fed, clothed, warm, treated nicely with respect, safe and so so happy. The only times she cried was when her parents and sibling passed and she missed them. She is "chronically" happy and makes everyone around her happy.
Children with ds, have the ability to bring pure unadulterated joy into this world.
May this baby bring you and your family lots of nachas and joy.
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Kiwi13
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Fri, Sep 14 2018, 5:35 am
Mazal tov on your new daughter! I hope she and you are doing well. I have no personal experience with this, but I just want to say I hear your pain and that your conflicted feelings are normal and there is nothing to be ashamed of for feeling both blessed and anxious or disappointed or whatever else you are feeling. Don’t judge yourself for any of your feelings. You love your daughter and want what’s best for her, and I imagine you’re scared about what this means about the challenges that lie ahead in her future. It’s okay and good to accept yourself and your feelings, especially as you begin to accept your current situation. Mazal tov again. Even within the pain, I’m davening for you to feel the joy and light of your new baby.
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amother
Pewter
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Fri, Sep 14 2018, 5:50 am
please reach out to people who have been there, done that in real life. They can be there for you.
Aviva Werner has a blog. She has a child with down syndrome and actually is fostering another child with Down syndrome. She talks about it a lot, you might want to read up on it to give you some chizuk.
I know someone who had a child with down syndrome and she said it was really tough at the beginning, she never would have chosen it but now that she has him he has brought so much joy in to her life.
All your feelings are completely normal, let yourself cry, let yourself process. It's a different reality then you expected. Hopefully the hospital has some resources for you as well.
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amother
Denim
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Fri, Sep 14 2018, 6:07 am
I was in your position just a few months ago. It's not easy. Be gentle and patient with yourself and take it one day at a time. It's ok to allow yourself to just be and take it as it comes. Your baby may be different than you expected but she is precious and beautiful and allow yourself to love her. Mine is just a couple months old now and is the cutest most precious thing! Iyh yours will be too!! For me, focusing on the now and enjoying her as she is helps. I try to think shorter term and will face the challenges as they happen, I find it less overwhelming that way. It's far from easy and that's ok. Lots of hugs!!
(Feel free to reach out to contact me if it would be a help. Now or any time down the line...)
Last edited by amother on Wed, Nov 11 2020, 2:53 pm; edited 1 time in total
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Chayalle
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Fri, Sep 14 2018, 6:18 am
I have no personal experience, but just want to offer you my full support OP. Mazal Tov! May your baby bring you much joy and bracha.
I have a neighbor whose son has DS. I think he's about 7 or 8 years old (I'm new to the neighborhood, so still getting to know people and their ages.) He's pure sunshine and absolutely adorable. He just lights up every room he walks into, he adores his siblings and they love him back. He's everyone's best friend.
I'm sure it's not easy but I wish you the same light in your life. Hashem should give you Koach for whatever lies ahead. May she bring you much Nachas, and may Hashem bentch you in every way possible.
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flowerpower
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Fri, Sep 14 2018, 6:20 am
It seems like you got some good advice here...
Mazel tov! May you see a lot of naches from your baby!!!! Take time to process it......it’s okay if it doesn’t happen right away. How is your hubby handling it? Is he supportive at all?
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FranticFrummie
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Fri, Sep 14 2018, 6:28 am
I second getting in touch with Aviva Werner. She is so warm and down to earth! She sees only the milestones and possibilities, and doesn't focus on what her children can't do.
When you have time to catch your breath, this is a really good website to follow. https://themighty.com/topic/down-syndrome/
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thunderstorm
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Fri, Sep 14 2018, 6:30 am
OP Mazal Tov! I don't have personal experience but my mother teaches a classroom of mostly kids with DS and they bring pure joy to anyone around them. I have encountered more than once where my mother received a phone call and she was sitting on the phone shmoozing for a long time. When she got off I asked her who that was and she said it was one of her students checking up on her to see how her summer was going and calling to tell her she misses her. Such pure sweetness and love pours out of these children .
Also the person in charge of our shul adopted a son and daughter with Downs. My kids love going to shul just to spend time with them. There is a powerful magnetic pull that they have to everyone. They just make everyone happy and I'm sure your baby will ultimately bring you much joy and happiness as well. Of course this was not what you expected so it's normal to feel pain and shock. HaShem should help you through those feelings and bring you to the point of experiencing your baby's daily sunshine.
Awhile ago I came across an Instagram account of a frum mother who has a son named Yoni with Downs and now is fostering a daughter named Goldi ,with Downs. They are the most adorable kids ever. The name of the account is "The Upside of Goni" . They are a true inspiration, maybe you can get in touch with their mother for resources and chizuk. I think just going through video clips and messages on that account will provide you with chizuk as well.
May you and your family be zoche to reap much nachas from your baby and may you have an easy time raising her .
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nosher1
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Fri, Sep 14 2018, 6:36 am
Mazel Tov. I am the mother of an adorable little boy with down syndrome. Baruch Hashem today there are a tremendous amount of resources to help us. Where do you live? We can help connect you to others who will hold your hand and help you.
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amother
Saddlebrown
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Fri, Sep 14 2018, 6:37 am
Mazel tov! I have no experience as a mother but as a sister of a little cutie (8) with DS - she literally changed our lives! she makes us all - everyone who has what to do with her - into better people with better middos. And she is so loving - you can't stop hugging her when you see her:) I'm not saying it's easy but it gets easier and you can really see the rewards daily.
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