DownSyn Forum

AliMama · Posted: September 10 2009, 12:45 AM Post subject: New moms of babies with DS

I am a new mom to a baby girl who was born with DS and a heart defect. I have not met any other parents of young babies with DS, so I am interested in connecting with other moms/dads who are dealing with similar issues. I continue to struggle with my feelings about my daughter's DS every day--it's hard. Feel free to post here or send a pm.

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Maresa,
Mom to Alisa (10-29-2008) DS, complete AV canal repair on 3-6-2009

~Ben'smum~ · Posted: September 10 2009, 7:58 AM Post subject:

Hi I'm also a mum to a ds baby, Ben is almost 6 months old. He doesn't have any health problems thankfully. Its hard sometimes to accept the ds but I'm here now and what possibly helped me is the fact that I work with people with learning disabilities and I know they have "normal" lives to a point. Some of them have better social lives than me!! Laughing

It'll take time, but you too will get there and you'll love it. Very Happy

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Karen- Mum to the world's cutest baby!! Very Happy

Ben

JanetG · Posted: September 10 2009, 8:22 AM Post subject:

Hello and welcome to downsyn! Where in IL are you?? I know it's hard, but give yourself time... When I first came here, everyone told me, "you'll get there". I didn't believe them, but here I am, 18 months into this journey, and somewhere along the way, I made it.. Not to say I don't have a bad day every now and then - we all do, but they will become fewer and farther between, you'll see.... Hang in there, come here often to see all the beautiful kids, and feel free to vent whenever you need to... HUGS!

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Janet (47)
Joshua (angel) '85 (1 day old)
Sarah-age 25
Jaret-age 8
Jacey-born 2/22/08 (dx w/ Ds 9/10/07)

Googsmom · Posted: September 10 2009, 9:08 AM Post subject:

Welcome to Downsyn {{{{{HUGS}}}}

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Jennifer, Momma to The Brookster 4 yrs old

www.specialneedsinmolalla.blogspot.com
www.foundalongthejourneythroughholland.blogspot.com

Momof6 · Posted: September 10 2009, 9:28 AM Post subject:

Congrats and Welcome to DownSyn.

We all have been in your shoes with the emotion about DS and know just how you are feeling. It's hard at times. I'm glad you found this wonderful family of people to share your thoughts and fears with. This is the only place I can come to and not feel so alone, and you will feel the same. We're all here to help. Can't wait to hear more about your beautiful daughter.

My Austin isn't much older that your Alisa. He'll be a year Monday the 21st.

_________________
~Christine~
Mom of 6
Brandon ADD/ADHD 19, Chelsea 16, Connor 14, Logan 9, Cody 6 & Austin 4 ( DS & Hirschsprungs pull through 12/8/08 ) diagnosis 10/28/10 Colonic Neuropathy, 12/16/11 dx with seizure disorder, neurogentic bladder...Monti Cath 11/9/12
http://www.caringbridge.org/visit/austinpaquin

I think I can, I think I can.
Climb the highest hills in all the land.
(If you think you can, you can.)
He could and he did !

I say CHEESE !

erikatx · Posted: September 10 2009, 9:34 AM Post subject:

My son is 3 weeks old... with DS. No health issues so far.

we are all different and we all heal differently. It does take time... I cried for about a week... until I came to terms with it. For others it might take longer.
Also, I put a lot of it in God's hands. Take one day at a time. Dont think so much about tomorrow, next month, next year... 10 yrs from now...

Like my doctor told us, if we lived each day depressed about it, and something was to happen tomorrow, we would regret that we didnt enjoy each day with our child.

And those have been things that have helped so far...

I dont love his DS, but I accept it. for me to deny it, it would only set me back.

you'll get there!

erika

~EloisesMummy~ · Posted: September 10 2009, 10:46 AM Post subject:

Hi There,

This is my first post here... Very Happy

I'm Anna I'm Mummy to Scarlett who's 3 and Eloise who's 4 weeks old: Eloise has DS.

We didn't find out prenatally but had a high risk screen of 1:110 at 16 weeks. We put it out of our mind until she was born - as soon as they handed her to me I knew.

Eloise is fantastic.

The first week was tough - finding out what couald be and what was wrong with E. SHe was biopsied for Hirshprungs which came back -ve but she does have an ASD.

I'm really very proud of myself, my husband, my family and all my friends who have all started to come to terms with the diagnosos and been SO supportive.

Eloise is just a normal baby at the moment who happens to have a hole in her heart and three number 21 chromosomes!

I'm here to chat - look forward to getting to know everyone.
anna xx

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I'm Anna (35) wife to Andy and Mummy to Scarlett aged 3 and baby Eloise who was born 10 August 2009.

McKaylasmom · Posted: September 10 2009, 11:00 AM Post subject:

Hi welcome. Yes, we have all been in your shoes, I would stop people in the stores when ever I saw another child with DS the first year she was born. You have found a great site to come ask your questions and meet other parents going through the same thing.

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Windy

Edensmama · Posted: September 10 2009, 12:56 PM Post subject:

Welcome Maresa! I'm glad you found us. When I first found out about Eden's DS I was completely devastated. I never cried so hard in my life and just felt I would never be happy again. She is 17 months old now and is our absolute pride and joy. I just can't imagine loving her any more than I do. I still have my moments but I promise it isn't going to be what you're fearing. Our life is beautiful and so much more "normal" than I could have hoped. Please come here and let the wonderful people on this site encourage and support you. It has been a God-send for me on so many occasions.

I am in Illinois too! If you're anywhere near Chicago, PM me and I'd love to meet you and your beautiful Ali some time.

_________________
Nathalie
Mom to Eden (DS) 4-13-08
Wife to Luciano (the best daddy in the world) since 10-8-2005
www.caringbridge.org/visit/edensalem

Asa's Momma · Posted: September 10 2009, 1:38 PM Post subject:

Welcome to all and to your absolutely gorgeous babies! Yes, it is a tough hill to climb but once you reach the top, man the view is incredible!

AN ESSAY FOR NEW PARENTS – by Jackie Henry

Down syndrome - the words, Down syndrome. You spell them out in your head; you’ve heard them before yet it’s the first time you have really listened to them. They have a new meaning now, and that meaning is life changing, but a change you will embrace, encourage and cherish forever…

My name is Jackie and I am the Mother of a wonderful little boy named Asa. Asa is chromosomally enhanced, I think of him as bionic. He’s got extra good stuff, much like Spiderman or Captain Courageous.

When Asa was born, we did not know that he would be a Super Hero. It was not until a week after his birth that we found out about his special powers. We were awe struck to say the least, but I was always taught to embrace life and make it what you want it to be. So, after many tears and those dreams of another time and another place, we started to put the pieces together for our Super Hero life.

Our journey with Down syndrome begins; there are those words again!

Today is the present:
I can’t say life is any different then an episode of Leave it to Beaver or the Cosby Show. We are who we are, and we do what we have to do – we live life. Ace (that’s his Super Hero name) was an ordinary baby and is an ordinary boy. We laugh (a lot), play (a lot), eat ice cream and love to swim. We give our dogs kisses and pull their ears, tell Mommy “no” and fight with her when we try to get dressed. His special powers grow by leaps and bounds every day! It’s just amazing…

The future is theirs:
And the world is a different place then it was 10 years ago. Our Super Heroes will have so many opportunities to strive and succeed, be included and live long healthy happy lives. They will grow up and have best friends that they jump in mud puddles with and ride bikes, go on double dates and have their first kiss. They will sing in the chorus or play in the band, be a football player and drive a racecar, or be a little princess that turns into a diva. They will be boys and girls, men and woman, who will touch the lives of everyone they meet and know. The feeling is indescribable, it is awe-inspiring and you are so lucky to have a Super Hero of your own.

Enjoy your journey – you will be amazed.

_________________

[/url]
"Life is What You Make it..."
www.henryfamily-lifeiswhatumakeit.blogspot.com

Jackie, Brian, Asa and Gracyn

happymom · Posted: September 10 2009, 1:40 PM Post subject:

Wow! some of you only cried for a week. Not me, I cried longer than that. I still cry every once in a while. But I have so many more GREAT moments that make me appreciate this wonderful son I have.He brings so much joy into our lives, it is hard to explain. Not that the others kids don't but this child has something extra (besides a chromosome lol).

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Married ,Mommy to 8
girl 26 married with dd,boy & baby boy 1/17/11, boy25 married with, boy, & baby boy 4/6/11, boy 22, girl 20 maried 5/3/11,girl 17, boy 14, boy 12, Netanel 6 with DS

earlyam · Posted: September 11 2009, 3:40 AM Post subject:

Welcome and congratulations on the birth of your little girl. My little boy Ethan is 21 months and was diagnosed after he was born and apart from a few hospital stays for chest infections is pretty healthy and a very active little man Laughing

As other posters have said those early days can be difficult and overwhelming emotionally but I find I gain a lot of strength from this forum, either through posting or even just 'lurking' sometimes. It's just comforting to know that other parents are thinking and feeling the way that you do.

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Jo, Mum to Georgia 11/11/03 ( BIG High School Musical fan) and Ethan 16/12/07 (DS)

LiamsMom · Posted: September 11 2009, 1:00 PM Post subject:

Congratulations on your new baby girl and welcome. The first few months are tough, but it gets better. I have a 10 month old boy with down syndrome. He had no heart problems and is feeding and growing. I don't know what the future holds but i know that i love my little boy and he has been a really good baby, his smile just melts my heart. I found comfort just being with my baby. This forum is great as well and many people share their lives and experience through blogging which i found very helpful just to see how normal life really was. Look forward to seeing more pics and hearing about your experiences and family.

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Kathleen

Mom to peanut (2006), llittle man (11/08 (T21), and twin girls (christmas 2010)

AliMama · Posted: September 13 2009, 11:44 AM Post subject:

Thanks for all the kind words. I'm so happy I found this site--I don't feel so alone anymore. I look forward to getting to know you all better--

_________________
Maresa,
Mom to Alisa (10-29-2008) DS, complete AV canal repair on 3-6-2009