DownSyn Forum

Rileysmum · Posted: January 12 2012, 5:54 PM Post subject: new ds mum

Hi eveybody. I became Rileys mum 6 wks ago. I had her for three days and then she was diagnosed with Down Syndrome. I was devastated. She is beautiful and just an angel baby- but I feel as if my perfect life has been turned upside down. Everyday I feel guilty having these feelings as she has no idea the turmoil she has created. dON'T GET ME WRONG - I love my baby sooo much - just still in shock. I need to enjoy her all the time - not keep thinking the worse. I think I may need counselling.

She is feeding, sleeping and just being a beautiful baby soooo well. She's an expert at it.

I just get so overwhelmed thinking about her future. I also have a four year old daughter who is so amazingly smart and I hope that Riley won't feel inadequete as she gets older.

I can't stop my thoughts! Please help me...xxx (I'm from Australia but when I found this site was immediately drAWN TO IT..)

_________________
salxxxxx

mary c · Posted: January 12 2012, 6:33 PM Post subject:

What you are feeling is perfectly normal. You were expecting one baby and you got another. You need to grieve for the baby you thought you were getting. Luckily Riley will make it easy for you to love her. We have all been exactly where you are right now and I will tell you it will get easier. For now, congratulations--you don't yet know what an absolute treasure you have received!

If you want to read how we went through the same thing, go to our family website, www.annasamigos.com and click on Anna's story on the left side. Feel free to come here often, vent, cry, and laugh. We are here for you.

_________________
Mary
Mom to Libby 6/92, Alex 9/93, Anna (DS)12/12/03

Please support the Down Syndrome Research and Treatment Foundation http://i139.photobucket.com/albums/q284/maryc_010/a13-1.jpg[/img]

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[IMG]

mellysmom · Posted: January 12 2012, 7:30 PM Post subject:

Very normal. It's a blow , that's for sure. We found out the night Melissa was born that she had DS and it felt like I was whacked over the head with a two by four. Just like Maryc said, You have to grieve the child you thought you were going to have. It doesn't mean you don't love the child you do have. You can love her and still feel sad . Don't let the sadness get the best of you or make you feel guilty. It's NORMAL and it will pass. I was / am madly in love with Melissa, but I struggled with the DS for quite awhile.

When Melissa was a baby, I swear the word Down Syndrome raced through my mind like a hamster on his wheel. That completely overwhelming feeling will subside. Smile

Your life will feel normal once again. It just takes time and there is no set time to come to terms with this. Some people accept it right away. Most of us take a little longer. Either way is okay, just as long as you keep loving your baby and keep loving ON your baby.

It's also normal to be afraid. Most of us are afraid of the unknown, that's all. Take it one day at a time.

She will steal your heart. You will love her with a fierceness you never knew you had . My other three children often accuse me of having favorites and Melissa is the fav. Smile

Hugs to you and Congratulations! Riley will be a Joy and a blessing. Smile

Michelle

Chirsty(lilly'smommy) · Posted: January 12 2012, 10:01 PM Post subject:

I've learned there are different kinds of "smart". Sometimes, my daughter (with DS) makes me feel kinda dumb! You'll be amazed.

_________________

Christy,
Wife to Bryan
Mom to Lilly (DS) 2/07, Savanna 8/10

lespring · Posted: January 12 2012, 11:12 PM Post subject:

Welcome to Downsyn! I know it's not the place you wanted to be. You just found yourself member of a club you didn't apply for. We've all been given that same notice, and wanted to hand it back. Shock...yes we know that shock well.

There really isn't anything any of us can say to make it all better. It will take time. Time is what you need, and you have a lot of it ahead of you. There will be good days and bad days. I promise....I really do....that one day you'll wake up and realize that "Down syndrome" was not your first thought when you woke up, or the last thing you thought of as you fell asleep. There will be a time when it no longer feel like it consumes your life.

Here's a link to a blog post I wrote, for new parents, about what I wish I knew then what I know now.

http://gardenofeagan.blogspot.com/2010/10/message-for-new-parents.html

_________________
~Leah~

My mom's blog
http://gardenofeagan.blogspot.com/

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Rob 26, Noah 25, Tyler 23, Bryon 23, Angela 16 (DS), Axel 12 (DS, adopted from Serbia 12/2012, AAI w/fusion) Asher 7 (DS adopted from Serbia 12/2011, AAI non-fusion)

TheBradyBunch · Posted: January 12 2012, 11:25 PM Post subject:

lespring wrote:

Welcome to Downsyn! I know it's not the place you wanted to be. You just found yourself member of a club you didn't apply for. We've all been given that same notice, and wanted to hand it back. Shock...yes we know that shock well.

OMG, I couldn't have said that better myself.

Welcome to downsyn.

It's totally normal to feel what you are feeling. You can't help how you feel, so don't feel guilty, because the guilt can consume you. Just take one day at a time. Ask us any questions, we'll do our best to answer them. The hurt goes away in time.

Your daughter won't feel inadequate, Noah is pretty unaware that he is "different" than his siblings, and his siblings treat him like they would any annoying little brother...as just that!

If you ever just need to vent, or cry, or share frustrations, we are here for you.

It gets better. I don't know if the bad days ever go away, I still have them sometimes, but they are few and far between.

_________________
Mom to: Nicholas (May/02), Nathan (April/04), Charlene (June/06), Noah (DS, ASD) (May/07), Jesse Lynn (July/08 ), Tessa (Apr/10), Kaitlyn (Jun/12)

"Sometimes the things we can't change end up changing us"

beckysmum · Posted: January 13 2012, 3:29 AM Post subject:

Hi all the other posts have said it but just so you know its completely true i will say it again , your feelings are normal and it does get better , my girl just turned one so i remember those feelings well and i now feel no shame about how I felt , ds is a journey for us pareents and those feelings aare a part of it , xxxxx

_________________
Claire & Chris , Mum and Dad to Bethany 05/03/1998 Calum 03/09/2004 Rebekah DS 13/01/2011

LinMac · Posted: January 13 2012, 4:34 AM Post subject:

Sal....A big welcome to downsyn!

_________________
Linda & John
mom to Hannah Kate (Age 14 ), Robert (Aged 8 - DS)

First day at school

thatfield · Posted: January 13 2012, 8:37 AM Post subject:

Welcome, I can't comment on the diagnosis feeling as mine is adopted. But I can tell you that she is the absolute joy of our life . she is a social butterfly. Everyone at her public school loves her . She is involved in all the stuff "typical" kids are and she loves being right in the middle of everything.
Your little one will amaze you and you will fall more in love everyday. give yourself a chance to catch up. Get all the help and info from all the great people here. this site has given me so many resources and help the last few years. It has been invaluable for me.
congratulations on your new little one.

_________________
teresa,
mom to chelsey 6-9-84 collin 2-17-95, Caty 2-14-98, clay 8-3-99, chloe ds 1-21-03, caycie 9-28-04, Caden 4-9-07, mammy to Mason 11-30-06, new grandbaby due 8-27-10

Emdad · Posted: January 13 2012, 11:25 AM Post subject:

Welcome!
I can't add a whole lot more to what's already been said. Yes, your "perfect life" has been turned upside down," but, guess what? - you've unwittingly entered a new life where concepts like 'perfection' stretch and grow and you will find beauty, truth, and love in places that you probably didn't know even existed.
This is not easy. Leah's absolutely right - it takes time. Realizing this can allow you to 'allow yourself' to experience what you need to.
It may not all be alright, but you can gain perspective on how you and your family fit into a wider world where I've realized that most people are dealing with some adversity - even if it's their own ignorance Wink

- and we all need compassion and understanding to get through this life together.
Welcome, again. We understand. These Moms are the greatest. You are now, too!

Tigger · Posted: January 13 2012, 9:23 PM Post subject:

Hi and Welcome!!! I am an Aussie too - from NSW Very Happy

I think all of us felt like we had been hit with a brick when we got the diagnosis. It is completely normal to have all sorts of feelings and thoughts including grieving for loss of expectations.

Everyone has to work through these in their own way but I do want to encourage you that having a child with DS has been a lot more positive than I expected. Talitha is 6 now and her siblings have adored her from day 1. She is starting school this year and I am overwhelmed because when she was born I couldn't even think about what would happen with schooling and stuff. She is going to the same school as our 10 year old foster child and I think she will do fine there. She loved orientation and is really happy with her teacher, plus she is there with quite a few kids from her preschool who already are her friends Very Happy

Feel free to PM me (send a Private Message) and I will give you my contact details if you want. There are quite a few of us Aussies on here and around the traps Very Happy

_________________
Karyn
Mum to Nikki (Jul 89), Stefanie (Sep 96), Joel [June 98] and Talitha (DS) (Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14

Rileysmum

Hey all!
I just read all your posts and you have all made me feel so much better!

I know everything will be ok and even though I felt like my world had been turned upside down - I just have to look at my gorgeous little girl and know she has been given to me as a true gift. I just adore her.

My partner aactually said last nite that he is looking forward to our future as her parents and he cant wait to see her grow and learn.

Thanks again - I will be in constant contact as this one post has already gotten such wonderfully positive replies.

You all don't know how much this means to me.

Sal xxxxx

_________________
salxxxxx

jtkkmom · Posted: January 14 2012, 12:08 PM Post subject:

HUGS. Many moms struggle like this in the beginning, but I will be very surprised if you don't look back in a year or so with totally different outlook.

As for 4 year old being a smarty pants, don't give up on that dream for your new baby girl yet. My 4 year old who has DS is quite the little smarty pants too! Here is a link to a video of her reading a happy new year message:

http://downsyndromeupupupandaway.blogspot.com/2012/01/happy-new-year.html

_________________
Laura - proud mom to my 4 girls

http://downsyndromeupupupandaway.blogspot.com/

http://community.babycenter.com/groups/a6729133/unlimited_potential

AliMama · Posted: January 14 2012, 8:32 PM Post subject:

Welcome to Downsyn and congratulations on your baby girl! Can't wait to see pictures! We didn't know about Ali's DS or her heart condition before her birth, so we were shocked and devastated. It's been a very hard journey for me. Everything you're feeling is normal, even the "bad" stuff, so don't feel guilty. This is a great place for information and support--so glad you found us!

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

Shelley · Posted: January 15 2012, 7:19 AM Post subject:

Hi there - I'm in NSW too - congratulations! That first year can be a bit rough while you adjust to 'the diagnosis' but it is also a wonderful year where you get to know your adorable baby - and realise just how much more like her sibling she is than different...
Can't wait to see some photos - our kids really are rather gorgeous! lol

_________________

Mum to Hannah (ds) and Kit 15/10 /04

www.shamptons.blogspot.com

luvpapa · Posted: January 19 2012, 9:09 AM Post subject:

congratulations on your baby girl!

lucasmom · Posted: January 19 2012, 6:55 PM Post subject:

Welcome!

I am mom to three great kiddos:) My middle child Lucas, who is 5, was born with Down Syndrome. We were shocked to say the least, as all of my prenatal screenings were within normal limits. I was 28 and thought my life was over. 5 months later I found myself pregnant with my daughter. Things happen for a reason, that I know. There will be some challenges along the way. Good times and bad times. I do know that having Lucas has put my life into perspective and showed me what life is all about. I was so self-absorbed with my career, $ making, material things etc before him. I am a different person now, a better person, because of Lucas:)

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Irene, mom to Mark 5, Lucas 4 DS and Ava 3

Adens mummy · Posted: January 21 2012, 9:30 AM Post subject:

Hi I'm from Australia to, QLD here, inland from Rockhampton and Mackay. everyone has covered my thoughts much better than I could. that first year we put ourselves through so much, life gets so much better. our little boy has just runed 6yrs everything has been pretty much perfect this year he is a little active and needing me to step things up for him. he wants to learn and do things at a pace I'm not ready for. I never seen this part coming!.
love and hugs.

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pumpkinator · Posted: January 21 2012, 11:11 PM Post subject:

Congratulations on your new baby and welcome! Your feelings are normal. Take the time to enjoy your baby, the time goes by so quickly.

maziebaby · Posted: January 22 2012, 4:16 PM Post subject:

Congrates!!! Mazie is the youngest of 7 and we didn't know until she was born that she had down syndrome, my first feeling was guilt I keep thinking what have I done to my family and also I/we had already fallen in love with her. I had a wonderful OB that only stressed the positive which really helped. But I can tell you that by her first b-day all I could ask my self was what did I do so right that god in trusted us with such a beautiful and special baby !! it dose get easier we had 6 typical children but Mazie has taught us so much a different way to look at the world ! if your wondering if she will notice the difference between herself and her sister when she gets older I have a granddaughter who is 3 yrs younger than Mazie she is ahead of maize in many ways, but Mazie doesn't even notice they are best buddies. Welcome to this sight there is so much support and Knowledge and what ever your feeling you will find one of us with the same of similar.

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Lisa Wife to Glenn Mom to Johnathan 24 Allison 21 Chad 15 Greta 14 Sarah 12 Jennifer 9 and Mazie 6 (DS/ vsd repair 8/03)

Ally's mum · Posted: January 23 2012, 12:07 AM Post subject:

Big hugs to you and welcome. I am from Australia too and have a 13 yr old daughter with DS. As everyone else has said...what you are feeling is pretty normal and understandable. Keep talking and sharing Smile

My daughter was such an easy baby as well. We had to wake her for feeds :/ Got a shock with child no 2 Smile

seansmom · Posted: January 23 2012, 11:40 AM Post subject:

Welcome! Enjoy the baby years. They are extra cuddly. Take it all one day at a time. You will be surprised at how much joy she will bring you and how much you will grow as a person.

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Kellie Mom to Sean 10 yrs with DS and Carly 14 yrs

Jare Bear · Posted: January 28 2012, 12:06 AM Post subject:

Hi there! My little guy was born the end of November, it was a surprise to us that he had DS as well Smile

. I understand the emotions you are going through, if you want to chat I would be more than happy to! Everyone here is wonderful, as you're already finding out. There is a lot to learn, but also, I've learned already, a lot is the same as with our other kiddos. Just love her, that's the easy part, and the rest will come with time!

_________________
Natalie
Mom to Alyssa '99, Shawn '01, Brayden '04, and Jarom (DS) NOV '11