Hello all,

I'm new here. I had my daughter on August 7th of this year. I had a really great pregnancy with no problems. Three ultrasounds that looked great and everything measuring as it should. Week 39 I went for my weekly check up and told the doctor that day at work that I had been a bit dizzy and had a headache. She wanted me monitored for a bit and another ultrasound done just to check things out and make sure they were still ok. My last ultrasound was at 36 weeks. They did one and she had fluid in her left lung. Since I was full term and had started early labor they decided to induce, only the petocin made my daughters heart rate drop. So emergency c section. It was all extremely terrifying. By the way this is my first child. While I was open on the table the doctor from the nicu said she looked like she has downs. I had to have someone repeat it. I was shocked. Anyway she was in the nicu for 12 days. It's been almost six weeks and I still have really hard days about her having Down syndrome. Days that I cry on and off. I can't even respond to the Down syndrome association woman who tries to contact me. I want nothing to do with her and her "it's a blessing" stuff. I need real talk. Such as I love my daughter and wouldn't trade her for anything but some days I go into my room and cry for a few minutes because I get sad about what she could possibly not have or things she could possibly not be able to do. I cry because I think, what if it's not very severe and she realizes she's different and gets sad about being different? What if we are watching a movie later on in life about prom and she thinks to herself I'm never gonna be able to go to my high school prom or possibly not get married. No kids. What if she is severe and she never gets to be independent? Things like that run through my head and I feel so bad for her. I feel guilty because I wanted her so bad, I brought her into this world where life will be hard for her. I'm tired of people sending me stories about how one girl with a sister with Downs let her walk down the aisle with her for her wedding. That doesn't uplift me! That makes me sad! I want my daughter to do it for herself if that's what she wants. I just need help and I can't talk to my friends because they all have kids that aren't special needs. No one really gets me. Thanks

First of all congratulations on your daughter! Becoming a mommy for the first time is wonderful, terrifying, exhausting, emotional and memorable....no matter what. Welcome to the ride!
Second, it's ok to feel however you feel. You're allows to be disappointed and sad and angry and guilt ridden all while loving your baby girl. We have ALL been there. Not one of us started this journey with nothing but happiness. It's harder for some to accept than others but no matter what we all went through a definite adjustment phase. My daughter is 9 now. I had all of the same fears you do. Today she is in fourth grade. She has friends and loves to play with her doll house, color, play outside with her younger siblings and rides the bus to and from school. Our life is harder in a lot of ways due to having natalie BUT it is our normal and has been for so long that it's no longer something that we even think about. We know HER so life being adjusted to her just comes naturally. You can't predict where your girl will be but many of our kids go to school, prom, sleep overs, join teams, have friends and enjoy most of the things typical children do. If the time comes that she realizes she's different please trust me that you will know what to do to help her. That's not something you need to even worry about right now. Today your job is to hold her. Love her. Sniff in her sweet newborn smell. Take her to the store with you. Go for walks. Lay on blankets. Snuggle in bed. She's a baby before anything else and no matter what is about her that makes her different from what you expected, to her she has and always was just as she is. She doesn't know any different than to just be her. It's us as parents that have our hopes and dreams intertwined with their lives. She loves her mama and today that's all that needs to be worried about. The rest will come in increments and you'll be more than able to deal with them as they come. My name is Lori Arnold Free if you'd like to look me up on Fb. You're not alone I promise. ❤️

_________________
Lori
DH and I are 34

June 19, 2008~ Alyssa

Natalie's web page
Natalie's video montage
Alyssa's web page
My photography website

First of all congratulations on your daughter! Becoming a mommy for the first time is wonderful, terrifying, exhausting, emotional and memorable....no matter what. Welcome to the ride!
Second, it's ok to feel however you feel. You're allows to be disappointed and sad and angry and guilt ridden all while loving your baby girl. We have ALL been there. Not one of us started this journey with nothing but happiness. It's harder for some to accept than others but no matter what we all went through a definite adjustment phase. My daughter is 9 now. I had all of the same fears you do. Today she is in fourth grade. She has friends and loves to play with her doll house, color, play outside with her younger siblings and rides the bus to and from school. Our life is harder in a lot of ways due to having natalie BUT it is our normal and has been for so long that it's no longer something that we even think about. We know HER so life being adjusted to her just comes naturally. You can't predict where your girl will be but many of our kids go to school, prom, sleep overs, join teams, have friends and enjoy most of the things typical children do. If the time comes that she realizes she's different please trust me that you will know what to do to help her. That's not something you need to even worry about right now. Today your job is to hold her. Love her. Sniff in her sweet newborn smell. Take her to the store with you. Go for walks. Lay on blankets. Snuggle in bed. She's a baby before anything else and no matter what is about her that makes her different from what you expected, to her she has and always was just as she is. She doesn't know any different than to just be her. It's us as parents that have our hopes and dreams intertwined with their lives. She loves her mama and today that's all that needs to be worried about. The rest will come in increments and you'll be more than able to deal with them as they come. My name is Lori Arnold Free if you'd like to look me up on Fb. You're not alone I promise. ❤️

_________________
Lori
DH and I are 34

June 19, 2008~ Alyssa

Natalie's web page
Natalie's video montage
Alyssa's web page
My photography website

Hi. Sorry no-one answered straight away. I want to say congratulations on the birth of your beautiful daughter. What you are experiencing is completely normal. We all went through stages of grieving the "normal" child we were expecting and fear at what our child would have to deal with. My daughter with DS is 9 almost 10 and has continually surprised me. Yes, it has taken her longer to achieve her milestones but she has gotten there. She is in a mainstream school, has lots of friends, is reading and writing and learning maths. She has an aide part-time. She is very much like any other 9 year old. She is addicted to Minecraft having taught herself how to play it. She is a expert with all the technology in the house, she loves playing with barbies and with her dog who she looks after. She had some challenges early on - heart surgery and tube feeding but eats really well now and makes me breakfast in bed when I sleep in. She makes a really good coffee with our coffee machine so maybe a career as a barista is an option.

I am telling you this because you will find that, although life won't be what you expected, you will move on from the grief you are experiencing now and life will get better. This place is a great place to come to and there are many groups on Facebook too. The DS community is very supportive and helpful. Welcome!!

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

"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

I'm sorry I didn't see your message earlier. This is a very supportive site and those first weeks and months are hard.
Congratulations on the birth of your beautiful baby - she is, first and foremost, a baby daughter just like any other. She will enjoy snuggling and being close to you. She will smile and play and she will associate you with milk and love however you feed her. Really, babies with Down's are not so different.
Some have medical issues, which is an extra challenge. But so do some babies without Down's, and at any point in life - it all comes with being a parent and we all just get on with enjoying, loving and supporting our children as best we can.
Your feelings of grief and fear are completely normal, and may last longer than you expect - however much you love your daughter. My little boy has just turned 6yrs and I still get that sudden realisation anew from time to time when I look at him, but those times are far less often now. I just feel proud of him.
My little boy has more severe difficulties than most, so I understand what you say about people telling you what your child might one day be able to do. Lots of adults with Down's form relationships and marry. I don't know that my son will be able to - no one knows at first. My first question when we got the DS diagnosis was, 'how severe is it?'. No one could tell us. It takes time to know. Best case isn't a realistic picture for Jacob but we love him and will do our best to help him to enjoy life even though he will one day need supported living arrangements.
Give it time - you don't need to find out now whatever it is you might want to know when your child is 18.
We have chosen not to get involved with our local DS Association but I can see that when Jacob is a teenager it might be good for his social life to be involved. You don't need to embrace everything at once. Some things will be there to help your child in the future, not necessarily you now.
The most important thing I want to say is that your baby already is her own person. I bet you have already got to know her own unique personality.
Down's Syndrome affects physical appearance and learning ability (sometimes some medical conditions). It does NOT affect personality, character, sense of humour, ability to give and receive affection, interests & hobbies, and so on. In the end, people with Down's are good at the things which matter, which really isn't looks and IQ.
My experience is that Jacob doesn't feel sad about past events, or anxious about future events - he lives very much in the moment. People pay a lot in therapy for that skill!
I hope you enjoy your baby - there are people here and elsewhere to support you on your journey.

Rachel xxx

_________________
Rachel
Mum to Thomas 05, Luke 07, Jacob DS 09. Married to Stephen.