Thursday, January 12, 2012

reflection... six years later.

Six years ago this week, our baby girl entered the world. As she laid on my chest shortly after delivery, I looked down at her and vulnerably stated, "I don't think she is supposed to be this color." Indeed... she was having serious problems breathing and was taken to the Neonatal Intensive Care Unit.

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shortly after delivery (don't mind the blood and gore)

Traumatized from having my baby girl whisked out of the delivery room... I don't remember much. Although, I do remember a nurse wheeling me into the NICU to see my daughter. As I peeked over her isolette and saw her swollen little eyes... I knew in my heart that she had Down syndrome.

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shortly after being stabilized in the nicu

At the time, I didn't voice my concerns to anyone... not even my husband. I think I thought that if I didn't talk about it... then perhaps it wasn't a reality. Eventually the doctors voiced their concerns... and they were the same as mine. We truly didn't know what having a child with Down syndrome meant for our family.

Looking back... I'm kind of sad that I was never educated. I really didn't know a thing about Down syndrome... or disabilities, in general. I didn't know anybody that had Down syndrome and I had nothing to look forward to. Our doctors were not the most supportive and the brochures that we were given regarding our daughter's diagnosis were less than promising. I felt more than alone.

This is why we educate and advocate however and whenever we can. We live our life... Down syndrome or not. We put ourselves out there and try to show the world that Down syndrome ain't so bad. Down syndrome is not a death sentence... hell, it isn't even debilitating. It is true love. It is sheer joy. It is acceptance of differences and embracing the same. 

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summer 2011

We have always said that if just one person is touched by our girls... then our job is done. But our prayer is that we go beyond that... I think we already have and we will continue to do so.


Six years ago this week, I sat in a booth at Chuck E Cheese with tears streaming down my face. We were there trying to have some semblance of a celebration for Mason's second birthday... the same day that we were to bring our daughter home from the hospital... seven days after her birth.

As I sat there, I couldn't help but watch the children run, laugh and play... all the while trying to hold back my tears... which was nearly impossible. I wondered how Payton would fit in to a scene like Chuck E Cheese. Would she even be interested in something like that? And if so, would the other children play with her... or would they stare and shy away from her? My heart broke all over again that day.

We often say... if only we knew then what we know now. Payton is just one of the kids. She plays, runs, climbs. She enjoys the same activities that all children do... and she does them just the same. She has play dates with her friends. She gets invited to birthday parties... and she has some pretty amazing parties of her own. She plays tball, she is in girl scouts and she is even on a cheerleading squad for a local basketball program.

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summer 2011

While Payton might not have all the social norms down pat... she has fun and she loves what she does. We could care less how far she hits the ball, how many words to a cheer she knows or even how many moves she misses. She is happy to be with her peers... doing what girls do. We are so proud of her and her happy-go-lucky self.


Six years ago this week, we wondered what school would look like for our daughter. Would Payton be educated with her peers? What would her learning look like? Would she have friends? Would the other kids make fun of her?

I have to say... we are so blessed with our team at school. Payton is included in a regular kindergarten classroom 100% of the time, with some push-in support. She is doing amazingly well... and a big part of that is her peer support. Yes, she has friends. No, they don't make fun of her. They are proud of her and they help her along however they can.

The other day I walked into her classroom, and one little girl ran up to me, "Payton passed her test today!" She was so proud of her... as was I. The kids understand that Payton needs more support than they do... they understand that it takes her a little longer to learn the things they do. It is good... we are in a great place and it makes my heart happy. One of my DS momma friends once joked that her daughter is like the mayor of the school... ohmygosh, so true. When you walk down the hall with Payton, every.single.kid... "Hi Payton B, Hi Payton B, Hi Payton B." Love.

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payton and some of her classmates

Here is where I will say that inclusion is hard work. I had to push a bit to make this happen, but we are so lucky to have a team that was willing to try... and willing to be educated about how to make this work for Payton. And I think she is showing them over and over again that she can do this. Inclusion can be successful, you just have to know how to make it work. You need to support your teacher and be present in the classroom. You need to network with the other parents and help them to understand Down syndrome, so they can relay that to their children. And so far... it is working.

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Man, I love that chick so much... she has changed my life forever. I was bawling the other day just thinking of how far she has come and how thankful I am for the blessings in our life. I'm not sure how many years I have cut off my life worrying about both of my girls... many of those worries unnecessary in hindsight, but when you don't know what you don't know... you worry.

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Six years later, I hope we have shown in some way that life is good having Down syndrome in it.

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118 comments:

  1. Very well said Bethany! I couldn't agree more with everything you have said and have felt those same feelings! Ethan is still in preschool and I wonder what kindergarten will be like and how hard will I have to push but I always worry!

    Nicole

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  2. You inspire me. I can only pray that I can be the kind of mother to my girls that you are to yours. Thank you for sharing such personal feelings.  I sit and bawl as I read what you write because I do share those same fears and emotions that you did/do. And it doesn't matter how many people tell me I don't need to worry. I always will. Having a child with Down syndrome does change your life but I have to agree it is a wonderful change.

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  3. This was a beautifully written post and I appreciated so much your sincerity in it. I love that you shared too how well Payton is doing! Way to go "Payton B"! :)

    Your comment about a friend telling you her daughter was the "mayor of the school" reminding me of a conversation I had once with an upper-grader at my daughter's school, when she was in Kinder. This little girl came up to me without any reservations, said hello to Chloe with the biggest smile on her face, and the preceded to tell me -- "We never had a famous person at our school, until Chloe Hartsfield came here!". That one melted my heart because I knew my girl was accepted and loved -- even when she wasn't under the shelter of her Mommy & Daddy. 

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  4. You leave me speechless, Bethany. I remember the pain in my heart back then. But, I can't hide the joy in my heart today! We are blessed! Thank you for sharing!

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  5. Aww thank you so much!! You are right, it is easy to say not to worry, but we are made to worry I think. LOL. I try not to worry as much, the more I realize I worry for unfounded reasons. :)

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  6. I love this!!! BIG smile :)

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  7. Your family has a wonderful story. Thank you for sharing.

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  8. Love!  Your daughter is just too adorable and amazing...thanks for sharing your story!  I think Kayla and Payton would be great friends...they are both mayors of their schools!  :)

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  9. Tales like this shove my fears into the corner even further than the day that Lyla surprised us 21 months ago.  Isn't it amazing how far your emotions can grow from Day 1?  And I have to admit, Payton's first picture takes your breath away.  I am so thankful that color was short-lived.  You look much better in cherub creamy pink girlfriend!

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  10. I love love your beautiful family, well reading and looking at it! It's awesome, thanks for sharing and being such a great, positive influence!

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  11. Such a great post...LOVED it all!!!!   I felt the same way you did when I had Avery..i had no idea what was in store for us bc neither me or my husband had any idea what down syndrome meant and we didnt know what it was either....we didnt know anybody that had down syndrome..if only we knew then what we know now..would of changed alot

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  12. This post brought tears to my eyes. While the "disorder" might be different, the feelings and outcome are the same! It's amazing to look back and see how far we have all come. Hugs! What a beautiful little girl she truly is!

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  13. Christie ChapmancarterJanuary 14, 2012 at 12:42 PM

    I love following your blog!  I now have 3 boys, and my worries are all the same.  I don't worry about the "xtra" chromosome now!   Your blog motivates and excites me of what I get to look forward to as my boys grow!  Thanks

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  14. I love following your blog!  I now have 3 boys, and my worries are all the same.  I don't worry about the "xtra" chromosome now!   Your blog motivates and excites me of what I get to look forward to as my boys grow!  Thanks

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  15. I LOVE this post!!!!  I so wish that I had found this when my daughter was first born because I had so many fears that were completely ridiculous now looking back, but as you said...when you don't know you worry.

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  16. such a beautiful post, Bethany!! tears streaming down my face - love everything about this post!!!

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  17. Hello! I "know" you from a forum a few years back and the inclusion group on facebook. My Noah and your daughter have the EXACT same birthday! So fun to see how well your daughter is doing. I really have enjoyed looking through your blog. :) Thanks for sharing!

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  18. What advice would you all give to a mom with a prenatal diagnosis of Downs? We have 2 kids and a baby due in August that the docs suspect has Downs. We will confirm with amnio in 1 week. We go back and forth. Keep the baby, don't keep the baby. The medical community is more than willing to hand out info. on abortion. The docs tell you all the horrible ways your life will be affected if we choose to keep the pregnancy going. It's scary. My husband and I wonder how we'll parent a special needs child. How will our kids and family be affected? How in the world will we be able to afford the medical bills without giving up what we've worked so hard for? What if we can't handle this? The unknown is scary. The push for abortion is scary. We planned this baby. We wanted this baby, our last and only 'planned' child. How does anyone ever make this decision if they aren't 'Pro-Life'? I feel like mothers with 'high functioning' Downs children are the ones to speak out in a positive light. I feel the others are silent...or...maybe I'm so scared that this is all I see. Any advice you ladies can give would be appreciated.

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    1. Dear Anonymous~
      I am called mom by five kiddos....my two youngest have Down syndrome, and the youngest of the two, we adopted at birth from a twenty year old precious single momma who didn't think she could raise little Charlie. Hope and Charlie are not considered high functioning in the Down syndrome community, but I am not silent about them. You can learn all about them on my blog: http://www.the30dayjourneyforhope.blogspot.com/ if you want to take a quick peek. I can tell you, and this is 100% truth, Hope and Charlie are the light of our lives. Our older children would not trade them for anything---our 17 year old athletic son runs off of the football field after a game to pull them out to play with him....while our two thirteen year old daughters sing songs and dance with them just to hear them giggle. As a mom, I have watched as their hearts have become more and more tender....as their compassion has grown to levels I could never have imagined....we all love deeper. I think all moms who have children who have that extra something special would willingly admit to being able to relate to your fear of the unknown. But this is an opportunity for you to put faith into action and believe that this sweet baby you have planned for and longed for has been created especially for your family...your entire family! The gift you are carrying cannot be expressed with words; you have to experience it to understand it. My prayers are with you friend.

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    2. We too were once in your shoes 3 1/2 years ago with a prenatal dx... Scared, given the unknown, the decision of an abortion... I felt like we were in the darkest moments of our lives. We too planned this pregnancy , have two other children and didn't know anything about DS or special needs? I can tell you with time.. We were soon so excited to meet our little man. We too confirmed with an amniocentesis. He is such a blessing to our family. Yes it is unknown how everything will turn out but so is life in general! I would be more than willing to give my email info to u if you have any questions? I think having a baby in today's society is so different with all the resources available to our little ones and the acceptance is amazing! We have had nothing but positiveness with our little guy! I thank god everyday for him! Will be saying prayers for you and your family at this time.

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    3. Anon - All you have to do is read through this blog or...

      (darn it, no blog roll. Don't google. Who has a current list?!?)

      ... or any of the other Ds blogs out there to find nothing but love & joy. Yes, sometimes it's hard. Raising ANY child is hard, you just have a slightly diff set of concerns & maybe a few more MD appts.

      We found out my daughter had Ds prenatally. I am left wing, pro-choice, not even a wee bit religious but my first son was stillborn @ 37 wks and there is nothing worse. NOTHING WORSE than losing a wanted child.

      And by the way, your doctors suck. Sorry but no one should "push" that decision onto an emotional mama. A thorough review of your options should include adoption (there is a WAITING list here in the US for kids w/Ds) and *current* info on what life looks like for people with Ds (not some image from the 1950s).

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    4. I, too, was in your situation four years ago. We found out when I was 12 weeks pregnant that our son would have Down syndrome. Mason is now 3 1/2 years old and I cannot imagine our life or our family without him. We were scared, shocked and confused when we found out. We knew nothing about Down syndrome. Like you, the genetic counselors only told us the bad things that *could* be wrong with our child. They didn't tell us that he would give the best and most authentic hugs ever. They didn't tell us his smile would light up a room. They didn't tell us that having Mason to look after would make our then 2 year old son the most caring, nurturing and encouraging child you could ever imagine. They didn't tell us that Mason would teach my impatient self how to be patient. They didn't tell us that our friends and family would thank us for helping them learn about acceptance. The genetic counselors don't tell you any of that. The other way that I looked at it was this ... no child comes with a guarantee. Brian and I have said on many occasion that given all of the things that can happen to a child ... Down syndrome is nothing. We'd take that extra chromosome any day. I ramble - but I can feel your worry and your pain because I felt it too. Just know that if your child does have Down syndrome and you welcome him or her into your family, you could never be sorry. Feel free to check out our blog at http://lochheadfamily.blogspot.com/. It's not nearly as "put together" as Bethany's ... but it's all I got!

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    5. Anonymous, I was once in your shoes 5 1/2 years ago. My husband and I walked into my OB/GYN's office to find out the sex and we walked out with the possibility of DS. Later that same day, we went for an amnio (the amnio wasn't going to change my mind about keeping my daughter, I'm just a "wanna know everything I can" kinda girl. Within 2 weeks I got a call at work confirming the diagnosis. It rocked my world. I never even wanted children!! I thought everything you are thinking and then some. I couldn't sleep, couldn't eat, had to take time off of work, cried every day and asked God, "out of all the people in the world why me?? I don't have a maternal bone in my body!" Then after about 2 weeks of feeling sorry for myself, my husband and I got educated. What once was a dreaded pregnancy turned out to a mommy and daddy anxiously awaiting the birth of their daughter....in a good way. She makes me a better person, so much so we are in the process of adopting our 3rd child with DS. Our 2nd child also has DS, so I consider myself triple blessed. And I'm not a momma with a "high functioning" child with DS, my daughter also has autism. These are all labels and there are no guarantees with any child...but I will tell you this, you will never ever witness the pure joy and love that these children can bring to a family. I have NEVER EVER heard a family say they regretted having their child (and I know a lot of families), but I do know of moms that regret NOT having their child. If you would like to stop by and see my little angels feel free....http://the21stchromosomeablessingindesguise.blogspot.com/ Praying for you and just to let you know, there is a HUMUNGOUS community that is here for you in any way and will be here to celebrate you and your child...

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    6. I can imagine your fears and anxiousness and its okay to express them, I am happy you have. I have an 8 1/2 year old daughter with down syndrome. My story is a bit different than most. We had a healthy baby girl, took her home 2 days after birth, loved her to pieces, took care of her, watched her grow..as we did with our older two kids. We didn't find out she had down syndrome until she was 6 months old. So, I never had any fears or anxiety over a diagnosis we never received, she was a "typical" child, just like my other kids. I had 6 months of loving this little girl, I took care of her, we met all of her needs..AND we had no idea she had down syndrome. So, do I think you can handle it, absolutely. Kennedy is no different than my other children. She loves music, she loves to sing, she loves iCarly and Big Tim Rush, she can be stubborn, crabby at times...just like my other kids. We don't treat her any differently. She completed our family:) Kennedy did have a heart issue and subsequently heart surgery and was up and at em 5 days later...this is the only medical issue she has had, I can honestly say, she is the healthiest of all my kids.
      Kennedy is a huge blessing to all of us, she loves unconditionally. She has taught me more in these 8 years than I have learned in my 43 on this earth. Because of her, I am more patient, more understanding,...I thank god for her each and every day.
      I understand you are torn, I know the fear of the unknown.....you can email me privately if you'd like, I really hope you consider it...there are no judgements here, just a shoulder and an ear.
      Bethcarmichael@verizon.net

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    7. We also had a prenatal dx @ 20 weeks. We were scared of so much! I never considered abortion, its just not for me. I bawled many many times about DS. The day she was born i fell head over heals in love. She is spectacular in every sense of the word...i have never since cried about Down Syndrome...not one time. She is now one. Her brother and sister are wrapped around her tiny pinkie as is her Daddy, family, and our community of 5000. I have no idea what level of function she will have but honestly it doesnt matter...she's mine and I love her. Besides nothing in life is certain...any one of my kids could get hurt or injured and be worse off medically. Please visit my blog or email me to chat...would love to talk more! Housethatjadebuilt.blogspot.com

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    8. I can tell you from the bottom of my heart that you will NEVER regret having this baby! This child is a blessing and made for you. My daughter is almost three and she is amazing! Because of her I get to be an amazing Mom. You have already proven you want this child by reaching out for advice, the same thing you will do when he or she is born. In a short time the fog will clear, life will return to a new normal and you will be thankful you are holding your child. DS is scary but in a short time you will be too strong to let a DS diagnosis define your child or family. Many thoughts and prayers to your family.

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    9. Anon,

      I can only imagine what you and your family must be going through right now and I am happy that you thought to comment on this blog. My Ellie is 2.5 years old and has Down syndrome. We found out just hours after she was born and it was a big shock to us. She is doing new things everyday and has tons of friends. Yes, at 2 yo she has tons of friends. We are in a playgroup with "typical" kids and they all love her to bits and call her "Ellie Bear". Of course sometimes times are difficult (again she is 2yo so she has her little tantrums), but it is like that with all kids. Ellie does go to some therapies and she does go to some specialists for issues like ear infections and reflux, but she is generally very healthy and is treated just like any other kid. On a side note, my aunt has Down syndrome. She is 53 years old and the youngest of 5. My grandparents treated her the same as all of their other children and everyone has turned out "just fine" as my dad says. My dad says he is a better person because of her as do my aunts and uncle.

      I recommend visiting www.downsyndromepregnancy.org and visiting the down syndrome board on Baby Center. Dr. Brian Skotko has done extensive research on the quality of life of those with Down syndrome as well as the affect Ds has had on their families and siblings. You can visit his website www.brianskotko.com to see these publications. There are a lot of great mom blogs out there that can give you a snapshot of daily life. You can also check out my blog at http://www.ellietheurer.blogspot.com

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    10. I know you are scared, worried and sad at the thought of having a baby with Down Syndrome. We ALL felt the same way! We ALL thought that this was the most horrible news we could ever get and had the same fears as you. I kept thinking--I didn't sign on for THIS!! Now, I have 3 children--Tommy is 8, Abby, who has DS is 5 and Aleah is 4. I did know that Abby would have DS at week 17 from an amnio. It was awful waiting to find out the news. I did not question whether or not we would keep Abby, but I certainly don't blame you or anyone else for contemplating that. But I guarantee that if you go ahead and keep this precious baby, you will one day be writing a blog to help convince people how truly awesome it is to raise a child with DS. You will tell of your struggles in order to help people choose life for their baby. I can hear your heart in your message---and your heart is telling you to keep this baby. Listen to your heart and know that there is a whole HUGE community out there to support and help you through this--you are not alone in any of this. I have met the most wonderful people and families whom I would not have met if it weren't for Abby. You will not have one single regret if you choose to keep this baby-I can promise you that. High functioning or low functioning--he/she will be YOUR child and you will love him/her from the bottom of your heart. You will not see high functioning or low functioning--you will see your precious child. You are very brave to post on here looking for advice...that tells me that you just need some reassurance that it will all be okay--here it is--I promise you--it will all be okay....

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    11. Dear Anonymous,

      When my youngest Rye was born, we actually had no clue he would have DS. When I was told he may have ds, I personally went through many emotions in those first few days. Worry that I couldn't be his mom, fear that he wouldn't make it, terrified at all we would be going through. Once I was released to go to the children's hospital to be with my son, I spoke with the drs, he was born with a heart condition (like his older brother), they all told me all these things that could go wrong with my child. I then went to the hospital library and got every piece of information I could on what we were facing. It was scary and i was terrified, but then I sent off an e-mail to one of my closest friends, when I asked him if he thought I could do this, his response was 'of course you can, because no matter what the challenge he's still your child. You will love him and work with him and face off against anyone or anything that threatens him because no matter what it is, when you mess with a child you find that momma bear' I laughed and cried but it was what I needed to hear. I never once thought of giving him up, never doubted that I would keep him, it was just fear.. I'm so very glad I got that piece of advice :) Rye is now a happy and feisty 5 yr old, who keeps us hopping and has a personality that makes everyone love him.. Nothing can keep him down, even if he's sick.. He loves with everything in him and will give hugs to everyone in site, if he sees someone sad he will smile and say hi.. He is the biggest blessing I could ever have received in my life.. Every DS kiddo I have ever met is sweet and loving and amazing.. some are high functioning, some are not and they are still amazing and smart and affectionate.. i'm not saying you won't have struggles, we have but you get through them day by day.. you find a support system that helps you through it... I have over 750+ families with DS kids on my facebook, you will def not be alone in this journey.. The other Ds moms are all ways there, commenting , sharing stories, sadness, triumphs, offering wisdom, comfort and support.. They have made all the difference in our lives and I love each one dearly :) I hope reading all the positive stories help you along your journey... feel free to contact me on FB or e-mail (sweettexascharm@aol.com)

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    12. I'm not sure what to say. My advise would be to NOT have an abortion. But, that is easy for me to say right? I am not in your shoes, and honestly never have been. Five and a half years ago I gave birth to Ella Grace, while I was in recovery from my C-section the pediatrician came in and informed me that they were going to test Ella for Down syndrome. In that instant my whole world crumbled. What would happen to my 2 1/2 year old son? This life would not be fair to him, he shouldn't have to be burdened with having a sister that is different. And me? I did NOT want this life, I didn't want doctors and therapy and a child who would be SO different from my "perfect" son that I just had no clue how I could raise her. And what about this poor little baby, Ella? This is NOT the life I wanted for my daughter, she would never lead a normal life, would she even have friends, could I love her like I love my son??? Of course the tests came back that proved that Ella does have Down syndrome. I went into a dark depression, several times a day I said "I want my old life back." But all along there was this sweet little baby. A healthy baby. A baby who looked to me for food, for love, and for everything that any baby wants. Slowly my perspective began to change. Here I am 5 1/2 years down the road with one AMAZING little girl. Ella is in her 3rd year of preschool with "typical" kids. She plays soccer, t-ball, and is in Girl Scouts. The kid has more friends than I can name. Sure she has to work harder at some things than other kids do, but she is strong willed and determined to not let anything hold her back! My son, that I was so worried about, loves his sister more than anything in the world and is her biggest cheerleader. He loves to talk to his friends about Ella, including telling them that she has Down syndrome, because he is so proud of her. And me, I am living the life I was meant to live and raising the kids I was meant to have. Ella is everything I never knew that I wanted in a daughter. My life is so much richer and yet suprisingly, boringly normal! I do not envy you having to make this decision and wish you all the best!!

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    13. Anon - we adopted a baby boy with Down syndrome after having a completely "normal" daughter. I don't regret it for a minute! Seriously give your baby a chance to show you the love. My almost three yr old doesn't speak. But he will. Maybe he's not high functioning to many. But to me - he is perfect! And he will speak, eventually. It's hard to explain, but I don't feel he is behind in things, he is just progressing at a slower pace. I wouldn't have expected my daughter to read a book before she knew her abc's. It's the same with Max. First he rolled over, then sat up, then crawled, then walked. He'll get there. Don't think about all the what if's -they'll make you crazy :) One day at a time. Your baby will need love, and milk, and diaper changes, just like your other kiddos! But in return, they'll give the most amazing joys ever. The highs will be higher when they reach a milestone. You'll never regret keeping this baby just as we will never regret we chose to adopt Max. AND, we have an amazing community of support. I don't live anywhere near Bethany, but I can come to her blog or facebook and ask her a question anytime. And in my local community, we have many friends who support us, with and without kiddos with Ds. It's amazing, really! If you decide you cannot handle this in your life, please choose adoption. There are thousands of families seeking to adopt a baby with Ds domestically like we did! Best of luck to you!

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    14. I have four children and my youngest has Down Syndrome. She was a surprise pregnancy and surprise diagnosis at birth. She has been such a blessing to me and my whole family. I really believe my older children and myself are much better people because of her. And I wouldn't change one thing about her! She made us who we were meant to be. You just have to take it one day at a time just like with any child..and you get an extra snuggly baby to cuddle and love!

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    15. Anonymous, I find it so difficult to answer your questions in a short comment. I compiled my own struggle, so similar to your own in an ebook called Dreams Change on Amazon: http://www.amazon.com/Dreams-Change-ebook/dp/B006Z2RBE0/ref=sr_1_1?ie=UTF8&qid=1330480559&sr=8-1

      If you send me your email address (dsmith0806@gmail.com) I would be more than happy to send you a free copy. It is the type of honesty that I wished that I could have read when I was in your shoes.

      It's not an easy thing that you're facing, and it's wonderful that you're seeking out answers here from other women who have been there....and Congratulations on your pregnancy!

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    16. My sister is Annie, she posted above. I remember when she told us Ollie might have DS. I remember how hard I prayed that it was not the case. I remember how hard I cried the day she was born and the diagnosis was confirmed. I didn't cry hard because she was perfect and amazing, i cried hard because I hated the life I thought she would have....I thought it would be full of hardships and struggles and that she and her siblings would never know a "normal" life. I can say, in all honesty, this is not the case. I see how loved she is, how those around Ollie have grown better because of her. She has been a blessing, and not a hardship. She has enriched our lives, not ruined them. She is seriously so great! As far as parenting a special needs child, you already know how to parent and this is another baby...i have no doubt you can do it and you will love this baby just as much as your other children. You will only see that perfect baby, not his/her imperfect genome. It took me a while, but I realized that DS was a diagnosis and that Ollie is, and will be, so much more than that. She is not to be feared, but to be loved. I hope that you know, you have a support system MUCH larger than just the people you know in your day to day life. My family's world has been expanded beyond belief and the DS community will welcome you with open arms and be there for you as much as you will allow. If your doctors are not supportive, please, please take my advice (as a doctor) and find different physicians that are. Being pregnant and due in August also, I understand exactly where you are at in this pregnancy and I ( and I know my sister without a doubt) offer you whatever help and support I can give as you make this difficult decision.

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    17. Dear Anon,
      I commend you for seeking out the "other" side of the story before making your decision. You don't have a definite diagnosis yet so stay positive but if the results should come back with the diagnosis of down syndrome there is support out here for you. I am thankful I wasn't put in your shoes being inundated with all of the negative yet I can't help but wonder if knowing before would have been so much better. My fifth child and only daughter was born with down syndrome 2 years ago and it was devastating and her "birth" day that should have been joyous and amazing was one of shock and disbelief and we were scared to death. The unknown was the worst part. I had absolutely no idea, no experience with anyone with a disability let alone down syndrome. But little by little she kept doing things all babies do, she ate, she slept, she pooped just like she was "supposed" to. I certainly said we can't parent a child with special needs but you know what you are now a parent of a child potentially with special needs and you will be SO much more capable than you know, you will surprise yourself with the amount of love for this child (I know because you are here seeking out help, you are already advocating for your child, you know deep down these doctors are wrong, this is not going to ruin your life). You love this child. The hardest part for me was accepting that this happened to ME and I won't lie I had a very hard time but as time passed and I could see how much my boys loved her and how happy they were she was here and how they were so proud of her. Almost every day one of them tell me how much they love her, that she is so pretty, that she is so smart. I can not even imagine if I had denied them this, I know their lives have and will continue to be enriched because of her. My life has changed in every way all for the better! This can be good, this can be a blessing if we let it. We have to let it that is the key. The world tells us they are not worthy but really what does this world know? I was determined not to let our family be defined by down syndrome. Kate is every bit a part of our family and treated as such with the same expectations and you know what she has met them. She brings me such happiness, she is every bit the daughter I thought I wanted. She loves baby dolls, necklaces, books, strollers and tea sets. I absolutely can't imagine my life without her. As they grow and things begin to unfold you will be further and further along in your acceptance and you will be capable of facing and handling the situation when it comes, in fact you will be fierce about finding the best solution possible. You will be surprised. Just take it one day at a time and when this baby comes you will be excited and joyous for it's birth (unlike myself which is what I regret most) and I wish you all the best and you are not alone.

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    18. With regard to making a choice whether you're pro-life or pro-choice, I can direct you to http://jaimeharman.blogspot.com/. She's very much pro-choice, but she and her partner made the decision to keep their baby. She's a wonderful mom of a beautiful child.

      I also had a prenatal diagnosis. I was only 11 weeks pregnant when we found out. We could have made another decision, but we already loved this baby so stinkin' much. And I'm saying this as someone opposed to termination, but political views don't hold as much sway when you're looking at your own life. I still believe what I believe with all my heart, but the biggest reason we kept Ellie is just LOVE. We love her. We loved her before she was even conceived. And she's ours.

      Our financial situation hasn't changed. She gets Medicaid as supplemental insurance, but that was not the case until she was about six months old. She makes us happy. She makes other people happy.

      So many have already spoken out, I'll keep it brief. Love. That's the answer, and the how you do it, and the why you do it. Not one of these women is super mom.

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    19. Extensive blog roll here --->

      http://reallifedownsyndrome-resources.blogspot.com/2010/02/families.html

      :)

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    20. My daughter, Lydia, was a miracle. I had been told several times by several different doctors that I would never be able to conceive and carry a baby to term again. I held tightly to my dreams and for two years was heart broken every month to find myself NOT pregnant. In April of 2010, I told my husband that I was giving up. We obviously weren't going to have a baby. In May, I was pregnant. :)
      Due to medications I took almost 2 years prior (for medically induced menopause), my progesterone levels were super low. With those numbers being out of whack and the persistent cramping I was having,my family doctor told me to prepare myself to lose the baby. I sobbed in that exam room and begged him to save my baby. I wanted this baby so very much and sincerely felt that if I lost her, I would never have another chance.
      So began 6 weeks of Hell. Worth it the first time I saw her face. :)
      Then the rug got swept from under our feet. We found Lydia's heart defect during our 22 week ultrasound and immediately had an amnio. The results came back a few days later that my dream baby, the baby I had fought so hard to save, had Down Syndrome.
      I fully admit that I fell apart for a while. I didn't know what it meant truly..other than some vague notion. Every doctor we talked to had nothing but bad news. Discouraging. I thought I couldn't do this. I thought I could never survive open heart surgery. I thought that every dream I had for my baby girl died with those two little words. I was PO'ed at God. What kind of a sick joke was He playing on me anyway?? What did I do to deserve this???
      We stayed the course because I gotta tell you that despite a thousand fears and doubts, I already loved my baby girl enough that they didn't matter.........
      I have found that I am much stronger than I ever gave myself credit for. Lydia made me stronger. The dreams that I thought died are now blooming. Lydia made me believe. I am the perfect mom for her. Lydia made me want to be better than I was before. She's taught me faith, she's shown me what a little grace, a pinch of sass and a whole lot of determination can accomplish. She brings me more joy than I could even begin to explain. I honestly never thought it was possible to love anyone this much. Or to feel so lucky, so blessed. I'm so undeserving.
      You aren't alone. We've all walked this path too.....

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    21. Abbie ... thank you for that! ^^^^

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    22. Anonymous- I was in your shoes almost six years ago. We found out at the nuchal translucency that we had a 1 in 5 chance of having a baby with DS. We had an amnio at 16 weeks and got the results that our baby girl did indeed have Down Syndrome. The pressure to abort was incredible. I have been where you are. I know how scary and overwhelming it feels. The scariest part was the unknown.

      I reached out to online communities and found amazing support. I also started doing research and met some people with Down Syndrome. The more I learned the less scary it was.

      That little girl, Lila, is now 5 years old. She is amazing and fills our house with love and joy. She is funny, feisty, determined and smart. We are so proud of her and all of her accomplishments. We are also in the process of adopting another little girl with DS. She is 1 and her name is Lexi. I can honestly say I am happier than I have ever been, and I would not trade my life for anything in the world.

      Our community is here for you and your family.

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    23. I wish you prayers of peace and a sturdy mind to understand what you are really thinking about here. You planned this baby and it was made out of love. From the moment of conception, your child had Down syndrome. It is nothing you did or didn't do. I truly hope and wish you keep this baby. It breaks my heart to think otherwise. Shame on the medical field for pushing abortion. They know nothing about HAVING and RAISING a child with Down syndrome. My son is now 3 1/2 and a joy to my life. Yes, his diagnosis was a surprise. Yes, I was scared. Yes, I cried. Yes, I wondered selfishly how MY life would change. Yes, things are sometimes difficult. Yes, it takes longer for him to learn what comes easy for others. It's funny though. None of that matters! My son brings so much MORE joy and happiness to my life than it ever would have without him. And his younger brother adores him and does not in the least bit have a harder life because he has a brother with special needs. What I ask is that you try and think about the possibilities of this new path, the great people you will meet, the joy you will find in the little things, the realization that perfection is just an image that doesn't really exist, that you can't predict the future for ANY child that comes into this world but most importantly, the love that he/she will bring to your family and the love you will feel for this child will far surpass anything you can imagine. This is happening for a reason. I will pray for you and I am not a religious person.

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    24. Hey, Anon. I was in a similar situation a bit more than 4 years ago. We had many indications that our child would probably have Down syndrome. Eventually we had an amnio after we found out that he would need surgery shortly after birth. Our little guy has had multiple health issues (some related to Down syndrome, some not) and I will say that his health issues have affected our lives much more than the Down syndrome.

      Having this kid is one of the best things to ever happen to me. He basically is my heart outside my body. I never knew the depth of my selfishness before him. And my other kids are becoming more selfless due to him too. Before him, I didn't realize how much I idolized education and obedience to a social norm.

      I'd like to encourage you to make your decision before you have the amnio, because if you are (blessed with) given the Down syndrome diagnosis, you will likely be too emotional to make a balanced decision. When we got our son's diagnosis, I remember telling my husband that I'm glad we already knew what we were planning to do with the information. The days after the diagnosis were some of the darkest days/weeks of my life. Eventually I reached a place of connecting with my baby, but for a while it just felt like I was expecting a diagnosis.

      So, how do you manage this as a family? You just do. I'm not Superwoman. I don't have a degree in special ed... I'm not a therapist... I'm not a very patient person... etc.
      As parents we do what we have to do for our kids, Down syndrome or not.

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    25. Hi Anon, THANK YOU for seeking answers before making any major decisions. A well researched decision is better than a reactionary one!

      Disclaimer: Regarding "Pro-Life"/religion/politics, I believe in a God but am not Christian. I have no religious affiliation. My personal morals would never allow me to have an abortion. Yet, I understand the legal reasons women are able to choose. I don't presume to know how my idea of God will make ultimate decisions about anyone's soul.

      My story (as short as I can make it) I did not have a prenatal diagnosis. I was told within minutes of Trent's birth that he showed signs of Ds. I was devastated. The only experience I had with Ds was from a small Louisian town where I lived for most of my life. There were no children, just adults that lived in a home. They had not received the benefits of Early Intervention. When I saw them with nurses at stores, I was frightened. That image came to me immediately after I was told about Trent. I grieved very hard at first!

      It was hard at first. Trent had open heart surgery at 2 months old. Then he developed severe protein allergies and could only tolerate a very special formula. He got pneumonia often & was hospitalized 4 times after the heart surgery. But I fell in love with him just like I did with my older children. I realized that I didn't care if he had Ds or any other syndrome, I just wanted my baby to live and be with me. I wanted him so badly I would ache to hold him.

      Trent is three now. Life is different because of his special needs but not much.

      He is typically developing in these ways: He throws fits just like a toddler. He says "mine" to other kids and doesn't always want to share. He likes to wrestle with his brother. He likes being chased outside. He doesn't always listen. He tries to play with his older brother & sister when they have friends over. He gets mad when they want him out of their rooms. He is really stinking cute. He loves McDonald's french fries like most toddlers. He takes off his shocks & shoes all the time!

      Trent is atypical in these ways: He tests at an almost 2 year old level in some areas. Other areas a bit higher. He has about 50 words and 20 signs. He cuddles way more than most three year olds...more than likely his need for deep pressure but I'm not complaining. He was very sick at first, he has a scar on his chest, he goes to a school program that he wouldn't go to otherwise. He still can't have cows milk (other children without Ds have this too), he makes some weird faces & sometimes does weird stuff like licking everything, his tongue sticks out but we are working on that, he has low muscle tone which means he can appear floppy, he is relatively short & light, he sees a speech & occupational therapist once ever two weeks alternating (for an hour)...I take him to those appointments. At the pre-K for special needs, he gets speech, OT, and PT. He has some sensory needs (deep pressure, swinging motion, and depth perception.)

      Trent's physical skills have really taken off...he runs, jumps, climbs, and dances like a madman!

      Other ways our life has changed: I have tons of new friends in the Ds community. I'm on the board of our local Ds society. I'm getting my masters in speech therapy. I currently work for the state's Early Intervention Program but that was not my original plan before Trent! I wanted to do mental health counseling for adults, but Trent's birth changed my passion.

      To sum it all up: Trent is my "sunshine." I adore everything about him...even the atypical special needs. I would not change him.

      Whatever happens for you & your family, I wish you peace.
      One more thing,there are waiting lists for children with Ds to be adopted. Most of the parents on the list? Already have a child with Ds. That should tell you something. We know a secret about the value of people with Ds.

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    26. Hi! I know you're scared and confused, and I pray that God will give you peace and discernment. He has already put you in touch with Bethany, and through her with an awesome community of Ds parents.

      I have two children with Down syndrome. Our son, Mason, is 6 years old and is the youngest of our 4 biological children. Our pregnancy was a surprise, as was the news that he had Down syndrome. He has an IQ of 45. He's amazing. He's not high-functioning; 45 is considered "moderately delayed". He can run and jump and play. He's not potty trained. His verbal skills are pretty good-- he can't tell you long stories, but he can keep up a conversation. He gives unbelievable hugs and kisses. He has "Where the Wild Things Are" memorized. His smile lights up the entire county. He has a wicked sense of humor. He has blessed us so much that we, like Bethany, adopted a little girl with Down syndrome from Eastern Europe. Our Junie has been home for 4 months now, and is adjusting really, really well.

      By contrast, our 8 year old daughter has a peanut allergy. There was no prenatal test for peanut allergy; when she was a year old, I gave her a schmear of PB on toast, and she broke out in welts all over her body. It has been life-altering.

      Down syndrome is a cake walk. It's an adventure, a blessing. It makes me appreciate life more. My kids w/ Ds are rock stars--- everyone knows them, everyone loves them. My kid with a peanut allergy can't go for playdates unless I can stay with her. She has to watch the other kids eat cake at birthday parties. She can't go in the play equipment at McDonald's, in case another child ate the sundae with peanuts and then touched the inside of the slide. She's never been in a Chinese restaurant.

      Peanut allergy stinks. Down syndrome makes us laugh.

      Peanut allergy makes us cry and scream and go crazy reading microscopic-lettered ingredient labels in dimly-lit grocery store aisles. It makes me have to say, "I really, truly appreciate that you checked every label and washed all your dishes twice in hot water before you spent 16 hours making those really amazing cupcakes that look like turkeys for the Thanksgiving banquet, but I can't let my daughter eat them because it only... takes... one... molecule..." Down syndrome makes us do the Bunny Hop through the living room on our way to brush our teeth.

      There is no easy button. There are no guarantees. I think guarantees are overrated. Dare to accept that this could be the beginning of a beautiful adventure God has written for your life. You'll be blessed.

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    27. Anonymous....

      I understand your fears completely... Our geneticist pushed for us to have an abortion. I have a 23 year old and a 15 year old and now an almost 3 year old little guy named Gabriel (yes after the angel) who has Down syndrome. I had him at 40 and BEFORE I had him, I was positive I could not do it... That We could not do it... I was absolutely devastated and fearful. I detached myself from my baby... Who a week prior to his prenatal diagnosis I loved and wanted.... I go to a place here in Southern Calif called ICEC and it is funded through Regional Center of Orange County. It has been a blessing. I have friends whose children are now signing and walking with this program who were "lower" functioning..... and there are SO many places, and people out there who support us, who are the same.... who understand. You can do this... and it will be hard. It will be filled with what if's, but what out weighs all of it is the absolute blessing and joy you will have from being a mother to one of these special children... I promise you... You can do it.

      Please read my blog and particularly this post: http://zebrapumps.blogspot.com/2011/01/world-did-not-endmy-pregnancy-story.html

      And I will post my number here publicly for you and anyone to call for questions and support. 714-610-3215 and my email cfcakes@yahoo.com.

      YOU CAN DO THIS.....

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    28. Dear Anonymous,
      a little over 4 years ago I found out I was pregnant. We had two biological children, had adopted two foster children and were in the process of adopting their baby brother. Our family had grown from two children to five in just over a year. We were not planning on this pregnancy.

      I was 41 at the time so I had some of the special, old mom tests. Our chances of our baby girl having DS was 1 in 4 after the first test. The next one we went to 1 in 2 or 50/50. We decided to have an amnio to find out whose life we should celebrate.

      Knowing our Jillian would be born with DS really helped. My big advise, don't read the studies that are on line. They are scary and inaccurate. Meet with local families, read blogs by those of us who have been blessed by an extra chromosome. You will find a totally opposite side of the story.

      What I didn't realize is, the fact that she is a "Schulze" is much more evident than I thought. Jillian learns in the same manner as my oldest does. She reacts to things the same way her sister does. The Down Syndrome, is only a part of her. In the same manner as eczema and far sightedness are only a part of my other children.

      Yes, the "special needs" takes special time and care. Jillian's special abilities have blessed our family tremendously. I am extremely excited for you and your family! Take the time, risk it all, do what only 1 out of 10 women do and keep your baby. I promise, you will not regret it.

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    29. Hi, there, My daughter, youngest of 6 kids has Down Sydrome, she has had her trials, medically, thers always a chance there will be issues with any child. I heard a quote a few times and I immediately thought of it when I read your story. It is simply " I never knew I wanted a child with Down Syndrome until I had one" welcome to holland Anon, it's going to be an amazing beautifully life, I think you know what you want to do, Bethany can connect you to a wonderfull huge worl on FB of support. :)

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  19. Life is good! I love reading your posts! I love our life with our daughter who has Down syndrome and can't wait to jump at the oppurtunity to adopt a baby with DS.

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  20. I couldn't read the whole comment asking for advice before giving some. At twenty weeks into my last pregnancy we found out that our daughter had Down syndrome along with other medical issue. We choose life because in my heart there was never a decision that needed to be made. Yes I was scared. Yea I was nervous and yes I grieved what I thought I had lost. But then my daughter was born and instantly I realized I never lost anything. I had gained a miracle. A gift from God. My daughter is only a blessing. She has brought so much joy into everyone's lives. She has made me a better person. She is like anyone else and like anyone else she deserved to live. I have never had an abortion but I would be willing to bet that you will never recover from it if that's what you choose to do. The "what if's" will haunt you, I'm sure. If your test comes back positive that your baby has Down syndrome I pray that you see the whole picture. This will be a blessing. Your child will Schubert so much. He or she will have dreams and goals and a beauty that will shine. Your child may not be born yet but that baby in your womb IS your child.

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  21. Anonymous- the unknown is always scary, but nothing in life is really known. you just have to follow your heart. it sounds like this baby is very loved and wanted and that will NOT change at birth! you will have your ups and downs with every child you bring into your family and this baby is no different. Trust me- once you see your baby, all those fears will fade away and you will fall in love with the wonderful child created by you and your husband. My child with Ds is our middle child and he is my heart! i can't imagine life without him. You CAN do this! The financial impact is not greater than any other child. Our son with ds is "less expensive" than our genetically typical son with asthma. Would you abort a kid with asthma if the drs told you the meds run $300 a month? Not likely. You make sacrifices to be a parent no matter what child you have.

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  22. Anaonymous-I think you have to ask yourself, can you live with the decision to end the life inside of you, whether you are pro life or not? If not, and you still can't imagine raising a child who has Down syndrome, there is a list of 200 families waiting to adopt a child with Ds. I assure you, if you decided to give your baby up for a adoption, he/she will be scooped up in less than 24 hours. Many people know how amazing this experience is, and wait for moms who are willing to share the greatest gift of the life of their child with them, so they can have the joy of this experience. If you would consider adoption, you will give the greatest gift to parents who are right now waiting for a baby with Down syndrome. You will live the art of giving from the deepest place in your heart, and the art of giving a child a chance. If you chose to have the baby, you will learn that your baby is amazing, and has so much to teach you and the world, and this experience is not as scary as doctors and others tell you it is. You will learn a love you never knew existed. Your children will learn how to give in a way you never saw them give before, with love, and zest and compassion. It is not as different from any other sibling relationship as people think. If you chose abortion, you will learn how it feels to take the life of your child. Life is all about lessons. You need to figure out which lesson you want to learn from, because no matter what you decide, you will learn one.

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  23. Oops, Anonymous, I meant to sign my anonymous.

    You are in my prayers.
    Diane

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  24. What a beautifully written blog!! Thank you for sharing. To Anonymous - I found out I was pregnant when my divorce was just starting. I then discovered the baby would have DS. I am raising my 3 boys as a single mom, and we have been so blessed. I had a conversation with the older 2 boys a week ago, Ty is now 5. Mom: Sam & Jake - What would you say if someone told you they were sorry that Ty has Down syndrome? Jake: "Why are you sorry? There is nothing to be sorry about. It's ok." Mom: Why is it ok? "He isn't like us, he is special, and he's the one that always makes us smile when we're crying." Sam: "It's IMPOSSIBLE to be sad or depressed or crying around Ty because he always does something funny to make you laugh. Ty is never really angry, he just yells at us. Ty is very special, he is the greatest gift our family could ever receive." Jake: "Ty is the the greatest brother you could ever have." Both boys: "Everyone should have a brother, JUST LIKE TY!! I wouldn't have it any other way!!!

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  25. Dear Anonymous, we found out prenatally that our first born son had Down syndrome as well as a major heart defect and both kidneys were enlarged and blocked. We were shocked and scared and cried a lot for a few days but then we accepted the child God was giving us and didn't look back. He is now 6 years old, heart and kidneys repaired....our joy boy! He is the best thing that ever happened to our family and is dearly loved by so many. He inspired me to create a website full of adorable faces and positive info....please check it out and feel free to contact me anytime. www.alifeworthliving.us

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  26. Oh, I forgot the most important thing... HAPPY BIRTHDAY PAYTON!!!

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  27. I forgot to mention that if you do visit my blog http://www.ellietheurer.blogspot.com in the upper toolbar there is a link that says "inspiring blogs".

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  28. Beautiful post! My little guy is 2, and he has a wonderful big sister, who is 4. My life has changed so much for the better in the short time he's been in my life. I can't imagine things any other way. Sure, things can be challanging sometimes- but what good things aren't worth fighting for? When pondering having another child a friend shared with me "no one ever regrets the child they have, but many do regret a child they don't have." So true.

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  29. Our first born has down syndrome. He is amazing and such a joy! Any child is a blessing, but kids with DS are an extra helping of that blessing. I understand the fears of the anonymous poster, but I hope that this blog and blogs like it help her understand. We had so many fears when he was first born, but if I had only known then how it was actually going to be, I wouldnt have cried or worried at all.

    When I had my son at the age of 22 I struggled with how "unfair" it was for us to have a child with DS at such a young age, and now I still think its unfair. Its so unfair to all of the people who go through life never knowing the love and joy and amazing experience it is to have a child with DS. We are so blessed to have one son with DS and one son without. I can guarantee you that you will never regret having this child, but would you regret killing him/her?

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  30. Please keep your child!! My son is the best!!! I adore him and so many love, love, love him!M these children are unconditional love and a gift!!!M
    Anne
    Mom to Joshua, 6 with DS

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  31. Hello, Anonynous. I am glad that you stepped out and commented here. Our son is 3 1/2 and we did not have a prenatal Dx with him. I am a bit different than some of the other mamas here as in I was never sad or mad or went through a greiving process. We wanted to grow our family and our boy is who God sent us (speaking from a spiritual standpoint). I am always heartbroken for the mamas that have to go through the greiving process. It is, in my opinion, not necessary. You will see that, when your own baby slips into the world. Our kids are just like other kiddos. They want the same thing. They do the same things. Life doesn't come with a guarentee. Any child that you could have could be born with various different things going on with them that cannot possibly be Dx'd prenatally. And in my experience, siblings don't care that their sibling has Ds. That person is just their sibling, just like mom and dad are just mom and dad. I could go on and on about the joy we have every day with our boy. He is a wonderful addition to our family. And as Bethany said about her girl being "the mayor"... I can tell you that we have also experienced the same. Every day when I go to pick up our guy from preschool some mama has a story about their little one going home and talking non stop about what my guy. And they are all positive stories. I think he is the most popular guy in his class. And that is a mainstreamed class too. They all love him and don't care that he needs a little extra sometimes, because he gives a little extra too. I know that you will never regret having your child. Congratulations, by the way!

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  32. I love reading all of these posts. Unlike many of you, I didn't know about my son's diagnosis. Drew is now 2 years old and we are experiencing the WONDERFUL, terrible two's. He was born on Christmas Eve 2009 on what I thought was going to be a wonderful day with family. Let's just say that the day didn't go as planned and the next 23 days of my life, is a time/experience I will never forget but that have helped me to love my son even more. We had some complications at birth that were unrelated to DS, and therefore he was in the NICU for 23 days. I was unable to hold my precious baby boy until he was 13 days old. I could tell by his little eyes, that he had DS all while the doctors told us that they had to run tests and check the possibilities. I thought my world had come to an end when we got the final results. All I could think of was that my then 3 year old daughter would not be able to grow up with a "normal" childhood because her brother would have problems. I tried my best not to cry because I felt I had to be strong for my husband, who had never had any dealing with people with special needs. (This is what I do for a living as I am a social worker, but I always worked with other peoples families, not my children.) All kinds of people came to us in the days we spent at the hospital with our son. They provided us with LOTS of info about adoption, because it was obviously too late for abortion. Fast forward 2 year... I won't lie to you, it has been a rough journey but we as a family are helping Drew to be all that he can be and to achieve all the goals we have for him and that he will someday have for himself. I'm not sure what state you are located, but there are all kinds of programs for people with DS, that will pay for most or all of your child's medial bills. As a parent with an older child it can be hard watching your baby not reach the milestones at the same time as your other child did. They all come with time, but it's when your child is ready. Like I said before, Drew is 2, he has just learned to pull up to a stand but is not walking at this time. He only sits by himself occasionally, and it isn't for long periods of time. He still can't eat regular food, as he has difficulty with feeding and still requires stage 3 baby food. He never learned to actually crawl, he pulls himself around the floor with his arms, and pushes with his feet. He can only say about 6-7 words, but he tries so hard to talk. He is in physical and speech therapy. He used to received developmental therapy, but he refused to work with that therapist and she was the only one available in our area who specialized in that area. Our journey up to this point has been a struggle at times, but it is worth it. My son is sweet, outgoing, opinionated, fun loving, and will try anything. He is more like my daughter than he is different as he is very social, high tempered, and wants his way all the time. I worried that they would have nothing in common and she would wish she didn't have a sibling. Drew loves her more than anything (including mommy and daddy) and she is the one that motivates him to do more things. You will never know another love like the unconditional love that a child with special needs gives to you. They are innocent, and when you look into their faces you can see in their eyes and smile that they love you so much just for being you, not for what you can give them.

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  33. Dear Anonymous- Since I see all the responses from mommies with DS, I thought maybe you would like to see a response from someone who doesn't have any DS children:
    I honestly don't really know anyone aside from Bethany B. personally who have DS children! But I see the joy Bethany's girls bring to her life and I can ONLY imagine how rewarded she must feel at the end of each and every day!!! I do have 3 "normal" children but during my 2nd pregnancy, at 21 yrs old, I had a test come back abnormal and was told my son could possibly have DS. The doctors talked to me about my "options" but I didn't hear anything they had say at that moment. The ONLY test I chose to have done was a special ultrasound consisting of different measurements...because in my mind if GOD wanted me to have a special child there was NOTHING I could do about it. HE was giving me a special child for a reason and afterall only HE had all the answers!! :)
    I have been blessed with the opportunity to interact with Bethany's girls firsthand (unfortunately it's not more often), see some of the things they do- THAT IS THE SAME THINGS AS "NORMAL" CHILDREN DO. I have seen her daughter Payton throw a fit, but believe me my daughters temper tantrums are WORSE, by far....pssst and she is 5 years older than Payton without DS! And Bethany's son Mason adores his sisters- unlike my boys who "hate" their sister.
    So you see, DS children can bring you just as much joy as "normal" children if not more. I read in one of the comments that one ladies DS child taught "her impatient self, patients" You are NOT alone as you can see from the mass of responses- there are lots of mommies with DS children out there. And if I know Bethany, you guys would remain LIFE LONG FRIENDS. I wish you luck in your decision making- I'm sure once you find the right support system things won't seem so hard!!!

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  34. Dear Anonymous- Our hearts all go out to you..as we were in your shoes also! out little one just turned 6. She is a true miracle in so many ways- and her and her brother are the lights of our lives. We found out at 22 weeks- and she was born 8 weeks later. ( u can see her profile pic on my facebook page- My name is Johannah Bruns Back- which shows her meeting the Fresh Beat Band last weekend...she has a big crush on Twist) My only advice to you is research, read, investigate and even go to your local DS chapter. Some parents may be willing to let you meet their babies and answer any questions that you may have. There is also a really good movie- Monica and David...its a tear jerker but an awesome movie. Prayers said for you and your family. Follow your heart....<3

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  35. Dear Anonymous,

    Oh, bless you. I too found out prenatally. To say I was devastated would be an understatement. I was crushed, terrified and felt entirely picked on by God. This was the child I had prayed, begged and pleaded for; our last child (we already had three kiddos). I poured over blogs, you tube and felt such joy when I would see a family that had a 'high functioning' child with DS only to be later crushed when I would see the latter.

    It wasn't overnight but little by little, day after day I felt like this was something I could handle. That I wouldn't start wearing sensible shoes and high waisted Lee jeans. We would still be us.

    Months passed and I would see how much the DS community that I reached out to and man. . .they gave me so much love and hope. I will forever be grateful to and for all these people. Bethany is amazing. This community is amazing, they showed me that I would FREAKING LOVE this new direction my life was about to take.

    You probably won't be able to believe me yet, I know I didn't but,. . .you will have so much joy. Jack is now five months old. I remember Bethany saying that she grew to love the physical differences, the beautiful stubby fingers, quirks like that. Girlfriend was so right. This isn't a door closing for you anonymous; this is an opportunity to blow open the whole freaking wall and see what love really is.

    Have faith in yourself, you can do it and to be honest: it really just isn't that hard.

    **if you would like to see Jack and read a bit about my journey of finding out and the grief/acceptance/pure joy I went through I blogged about it a bunch here. www.texasmeads.blogspot.com

    Sending you much love.

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  36. Hi there. I have a little girl, 18 month, with Down Syndrome. And let me tell you,she is a light of my life, she makes me happy and proud. There is going to be hard times, especially when medical things will come, but it will make you love your baby even more. I have 6 other children, ages 17-5, and they love her like there is no tomorrow. I will not change her extra chromosome for anything, and if I was given a choice to have a typical child or a child with DS I would take a child with DS. There is something very special in them. Please, give your baby a chance to live and love. If you are a facebook user, there are a few groups where you can find support. And if nothing else, I know there are people who are looking to adopt a baby with DS. Best of wishes.

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  37. Anonymous

    If you find out that your baby does have Down Syndrome, it will not be the end of the world!! I'm not making lite of it at all, my heart knows what that is like. When my son was born we found out three days later that he would be tested for DS. When it was positive it was like the baby we had and thought was perfect like our daughters, had died! We grieved that child that we lost and we were lost at what to do. Skip ahead thirty two years because that's his age now. I do still tuck him in at night and kiss him and tell him how much I love him! He is the joy of our whole family and everybody loves, loves, loves him! He is not high functioning really, but he is just himself! After a while you don't see them for anything except who they are as a person, not as a person who has DS. We have said many, many times through the years that we are so glad God chose us to be his family...because we would NOT want anybody else to have him! He is a blessing to our family and so many others. There were battles and tears along the way, but that is true of our other children too. Don't abort a child that has more to give you than you will ever give him.

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  38. First of all, congratulations! Babies are a blessing...ALL babies. As a mother, I understand your worries & concern for your family. Having a child with DS will change your lives forever.....and let me assure you that you will be SO glad it did! Your family, specifically your other children, will learn life lessons that they may never have had the opportunity otherwise. It will make them more understanding, more loving, more accepting, and overall better people as they grow older. I cannot express to you how incredibly strong the bond will be that your children will form with each other.

    Doctors say scary stuff. But they are ignorant to the abilities of these children. Put your mind at ease by knowing that this baby will be FAR more LIKE your other children than different. He/she may take a bit longer to achieve some milestones but they WILL be reached. I'm sure your other children didn't walk or crawl or even feed themselves at exaclty the same age either. It will be no different with this baby. Probably will be a few more doctor appointments but sweetie...we are "Supermoms" and you will handle this just like anything else life throws at you.

    When we first heard of my son's diagnosis, I cried for days. I just wanted a little boy that I could watch play baseball and ride a bike and make lots of friends. He's almost 5 now and I get to watch him play tball EVERY Saturday morning. He skinns his little knees up riding that bike but much unlike my daughter, he brushes his hands off & gets right back on. And don't you worry about him making friends. EVERYONE on Grayson's team & every other team want to high-5 him at home plate. =) The point I'm trying to make is that this baby, no matter the diagnosis or what the doctors tell you, WILL have far more similarities to every other baby than differences.

    You worry because you don't know what the future holds but the same is true despite the possible diagnosis you've been given. A friend of mine had no way of knowing that her 7 yr old would be injured in an accident & spend the rest of his life in a wheelchair but she would never abandon him because of his differences, just as you wouldn't either of your children. Life will throw you curve balls. You just learn to swing & knock it out of the park! ;)

    Let me add that the "high functioning" moms are the ones encouraging you because we're all there is sweetheart. :) "Low functioning" children with DS were outgrown when the world started shining light on our children and realized that they were far more capable of doing things than the world of doctors originally thought. 20 years ago doctors were advising mothers to institutionalize their babies. Children thrive from their environments. So when moms started raising their children at home, in a normal environment with main stream children, they began to show the world how alike they really were.

    My son doesn't speak clearly but it certainly doesn't keep him from communicating. He is the most amazing little boy I have ever laid eyes on! I have learned much more from him that he will ever learn from me. I hope you will experience the same joy!

    ~hugs~ from NC

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  39. Anonymous, I'd be happy to send you a copy of the book "Gifts". I have extra copies. I think you will find it very comforting. If you want email me your address and I can mail it tomorrow. catherinelfinn@ygmail.com

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  40. when rachel was born, i already knew in my heart she had ds. I refused amnio test cos i didnt want to make that decision. I decided what will be will be. Sure enough she had ds. First couple of days (I had a c section cos of my own health issues) I spent in hospital thinking god ive given birth to a monkey, and wondering whether or not my husband would stick around. I even considered telling the hospital i didnt want her. Then I gave myself a talking to. Im an adult I said, you made this baby, I said, and you deal with it. Then I picked rachel up and looked at her and she opened her eyes and bang i was a gonner. The amount of love that comes from that child, its like a bottomless pit. Sure physically its a bit harder, but the rewards omg, everytime she progresses, does something that in a so called normal kid is just part of growing, the smile on her face, the thrill in my heart. Its like winning the Oscars everyday and the thrills just keep getting more and more. Today she let me cut her fingernails without struggling and we even put polish on them, She thought it was great and i got that many hugs and kisses. So what if you cant afford the biggest and bestest stuff out. Isnt the love of your child which binds the whole family together and educates the other kids about self sacrifice, love and cherishing that much more important. And no rachel is not high functioning. She has ds, autism, very low muscle tone and at 12 is still in nappies as she is incontinent. Would I change her? Nope

    hugs from New Zealand

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  41. I never knew I wanted a child with Down syndrome until I had one. In fact, I thought that I didn't want one. I didn't know what I was missing out on. I wouldn't change one thing about my son. He is the biggest joy I have ever known and amazes me everyday. He makes me realize what is really important in life, I love him so much that my heart swells with so much love I don't even know how it's possible.
    x

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  42. Dear Anon:

    I am a single mom with an eight year old girl who has Down syndrome. I have tears streaming down my eyes as I type this. What you need to know is that every fear is normal and let someone listen to every single one of them. I will give you my story if and when you want to hear it.

    Danielle Dumas-Barrani
    810-819-4251

    Use it anytime. I could not imagine my life without Mia

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  43. I'm the 'anonymous' poster :) My name is Nicole. I'm 32. I'm married, have 2 beautiful girls 6 and 5. My husband is wonderful. He's a great daddy. With this baby, we set up a 12 week nuchal translucency test after much debate. Our doctor thinks this is a good test, so we agree. The ultrasound machine turns on and we see this little person. Fully formed,arms, legs, fingers, toes, active, alive. At one point the baby turned it's face to the screen and vigorously opened and closed it's hand if saying 'hello' to us. We saw the baby open and close its mouth and stick out it's tongue. We are 13 weeks 1 day. I watch them measure the baby's neck over and over. I see number that I know are not normal. My husband wonders what's going on...but I know. AND THEN, it happens, this doctor we've never met comes into our cold dark room with her laptop and my chart. She gives us the news in the most cold manner. "This does look like an affected pregnancy" We leave with a 1:200 chance this baby could be 'affected' with some genetic disease. We get our blood test back 2 days later. Our chance is now 1:20 pointing at DS. We are given 'options', most of them included abortion and how 9 out of 10 women diagnosed prenatally before 20 weeks gestation abort their babies with DS. Our minds race. WOW. This must be SO bad that no one wants to do it. The thought of an abortion makes me ill. I can't get the image of that little baby waving at us out of my mind. I call the abortion clinic (We live 2 hours north of Minneapolis, MN) and I am comforted by how they speak of so many women like me doing the same thing when they find out their baby has DS. I'm still sick. I can't eat, sleep, focus, nothing. I cry...at everything. I still do. I try to tell myself that maybe there's a way that I can have an abortion and never remember what had happened...impossible. Again, I go back to that ultrasound. I will NEVER be able to pretend that baby wasn't alive. My mind quickly reverts to the thought of keeping our child and facing life. We are quickly shot down by the medical community. They are SO willing to tell us that it's our choice but it's ok to not keep the baby. I worry about acceptance, our other kids, medical bills, patience...the list goes on. We have a loving family but I'm no super mom. I think I can't handle this new life....my friends and family think I don't give myself enough credit. I wonder what the hell they're thinking. I too wonder what kind of sick joke God may be playing on me. I think "ME! Really? You think I can handle this?" I think about the moment where this baby is born and about bringing that baby home, looking at the baby and thinking to myself "I can't believe I ever thought about NOT keeping you." My heart loves all 6.99cm of that baby. My mind says "You're crazy to think you can handle this" I'm trying to sort my thoughts. My midwife said "Knowledge is Power, So Seek It" and I am. I read this poem called "Welcome to Holland" It resonates with me. If you get a chance to read it, do so. I prayed that I wouldn't feel this baby moving before our amnio., but I do. I feel like this baby is saying, "I'm here. Please love me." I know I can do that. Love my child, that's easy. I'll keep your contact info. and report back in 1 week. Thank You All!!

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    1. Hi sweet Nicole ... thank you for coming back and reading. I have not yet responded to your questions, but I would like to ... and I hope some of what my awesome friends have written here has helped you. This is our community ... it is awesome. I just scrolled through here reading and am so proud of all of these mommas ... and you too. :) You have taken a very important step and that is arming yourself with knowledge ... we are desperate for that when we learn of a diagnosis (or possible diagnosis).

      I think the thing that could kill us all are the what if's. And most, if not all, of us will say -- if only I knew then what I know now. I tried to show that in this blog post above (^^^^) ... but sometimes it is so hard to put it all into words. Truly ... there are what if's with all children, Down syndrome or not -- we just don't really think about it until we are faced with it. You are going through such normal emotions -- please email me if you would like to chat more. I'm happy to call also -- promise, I get what you are feeling, I have been there, and have come out on the other side. My love for my girls makes my heart freakin ache -- never knew I could love like this. It's so good. You will see. ;)

      BTW, I'm from Wisconsin originally and went to college in MN -- a girl after my own heart!!

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    2. Nicole,
      First off, I want to say "Congratulations" on your sweet baby!
      I see that alot of mommies with little ones with Down syndrome have responded to you, but I would like to voice my opinion here a bit since I am not a mommy but a SIBLING to a little one with Down syndrome. My baby sister's name is Laura, and she is almost 2 1/2 years old. I saw that you said that you worry about your other kids. I just want to say that Laura is the best thing that has EVER happened to me! I was 17 when we found out prenatally that she would have Ds, and I was almost 18 when she was born. I am almost 20 now, and she has taught me more in her 2 1/2 years of life than I had ever learned in the almost 18 years before she came into my life! She has made me a better person. I love her more than I ever thought possible to love a child. She haa shown me what true love really is. She has taught me the true meaning of unconditional love. We love our little Laura so much that we have decided to adopt ANOTHER little girl with Down syndrome from Eastern Europe :) I can promise you this....having this baby will not RUIN your childrens' lives, but make their lives 1,000 times better! I will be praying for you, your little one, and your family. Please keep us updated!
      Love from CA,
      Ashley
      P.S. I have a blog that I write letters to my little sister (and the little girl we're adopting), and you can find it at somethingbeautiful1025.blogspot.com

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    3. "My husband and I wonder how we'll parent a special needs child. How will our kids and family be affected?"

      We wondered the same thing. Because we didn't know what we didn't know. And now, I can tell you we parent my girls (they both have DS - younger one is adopted) exactly the same way that we do our (typical) son. For reals - we have the same expectations of all of our kids, extra chromosome or not.

      Your other kids and your family will only improve, promise. The bond that is created by this extra chromosome is insane - within your family and within this awesome community. It's funny, because we are often told how compassionate our (typical) son is. We know no different, but I can only thank Down syndrome for that. My girls are seriously awesome -- I wish I could just pull you forward a wee bit to give you a glimpse of how happy you will be with that baby. Alas, we all have to go through the motions to get there -- you are doing that now. These are the motions that will shape you for the rest of your life.

      "How in the world will we be able to afford the medical bills without giving up what we've worked so hard for?"

      In many states (Minnesota included!!!), there are Medicaid waiver programs. Your child will get Medicaid as a secondary insurance and that picks up everything your primary insurance doesn't pick up. Usually respite and free diapers (after age 3) are included in this. I can hook you up with some friends up in MN if you want more info on this. I believe they are all on the waiver there.

      "What if we can't handle this? The unknown is scary."

      It IS scary. And you will do what you have to do for your baby. Just like we do for all of our children. I just saw this quote today -- it is so true.

      “We cannot change the cards we are dealt, just how we play the hand.” ~Randy Pausch

      "I feel like mothers with 'high functioning' Downs children are the ones to speak out in a positive light. I feel the others are silent...or...maybe I'm so scared that this is all I see."

      I blog, but not because I believe my girls are "high functioning". Because I don't think that. They do very well, but they have struggles too -- and I have talked about some of our struggles here on my blog, apraxia being a big one for my older daughter. I blog to educate others that no matter what the functioning level of a child with Down syndrome, LIFE IS GOOD and it is what you make it. And yes, I push my girls to the extreme, and I push for inclusion, and I educate others around us, and I involve them in things they enjoy (cheer, girl scouts, tball, etc) -- Down syndrome doesn't stop that for us and the steps you will take as a mom will help pave the way for your child. You will be your child's advocate -- you are already doing that. :)

      When Payton was born, all I really wanted to see was what our life COULD look like with her in it. And I was inspired by others ... and I realized our life would be what we make it to be. And it's damn good. It's great! And I believe that my girls inspire others every.single.day.

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    4. Nicole, Hi! It is so very nice to "meet" you!! I am the mom of 4 kiddos 3 boys and my Maggie Jo who is 16 (going on 25!) she is smart, sassy, stubborn, and loves unconditionally!! :) She is in the 10th grade at the high school and is the most populer kid at school!! Mags is very active in Special Olympics and loves going to all events! She loves cheerleading, dancing, singing at the top of her lungs! (Sunday was youth Sunday at church so they were all in the choir she was the ONLY one that could be heard! :) I just hushed and listened to her singing praises!) Maggie loves her life and we love her! I was 27 when she was born, I did not know before she was born that she would have DS, although when I was feeding her during the night I knew that she had DS but just blew it off and didn't say anything the Dr. came in late the next day and said that he thought that she had DS and would test her. I unlike most of the others did know about DS and the hardships that could come along, my first cousin also has DS and Lord let me tell you she is something else! she is spit fire bossy and if you are doing something that she don't like she doesn't mind tellin ya about it! :) She is 40 and going strong! I watched how my Aunt had to fight for the rights that Sonya deserved in the school! Of course it was so different back then but still today there are still times that I have to fight with Maggies school to! But thats just a thing! My girls are the light of my life and don't ever wish that they were not apart of it! Maggie has never been treated like she was any different than my boys, she's been grounded (more times than I can count!) she has chores, she has all kinds of friends she has a boyfriend, oh and she is the Facebook Queen!! :) I hope that you will find comfort in the stories of all of these Mama's on here I know I have cried reading several of them! Maggie did have open heart surgery when she was 4 and had her A/V canal defect fixed but has been a very healthy girl all of her life she has hardly ever had a cold! Now we have had our share of dentist visits, but nothing major! Please if you ever need to talk just send me a message jmrcmama@gmail.com or you can always find me on facebook @ https://www.facebook.com/profile.php?id=1076853431&ref=tn_tnmn#!/profile.php?id=1076853431
      Thank you for taking the time to seek out more info before you decided to do anything! I hope that you will find comfort in these stories, Down Syndrome is NOT a death sentence I would take extra chromesomes anyday! Keep in touch!!
      (((HUGS))))
      Lisa

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    5. Nicole,
      As you can see, the DS community is an amazing one! Most of us don't "plan" on joining such a community when we get pregnant, but in retrospect, it's like getting an invite to some amazing party that few get invited to. I have 3 kids, and I can honestly tell you that our youngest (who has DS) is by far the easiest and most fun to parent! To quote Forrest Gump, "You just never know what you're gonna get." My oldest is a great boy with ADHD. Our middle child is in the autism spectrum and has a few other major issues that go along with that - she causes us the most stress, but we love her to bits. And then there's our youngest - our creative little adventurer. She was a micro-preemie born weighing 2 lbs 7 oz. She started reading at age 3 - younger than our other 2. Nah - I didn't "work with her tirelessly." Nope - I bought a DVD series called Your Baby Can Read off eBay really cheap and let it play in the background while she played. (I'm NO supermom! LOL)

      We wouldn't trade or change our youngest for the world.

      We'd love to have you as a part of our community!
      My blog: http://adasperdown.blogspot.com/ (you'll notice most of the posts are about the middle kid - LOL)

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    6. Hi again Nicole! Thank you for reading all of our stories and coming back! As you can see, when a mom calls for reinforcements, she gets it! We are like a bunch of sisters that have your back at all times. It really is an amazing community. My husband laughs sometimes and says,"You and the other moms don't play" when it comes to our kids.

      Honestly, there is still some ignorance that our kids face. They may get picked on occasionally, but not like it used to be because we, as society, are generally raising kids to be more accepting of all people, including those with different religions, sexual orientations, race, and abilities. We are living in a wonderfully tolerant and accepting time!

      I don't know anything about your state, but my state has medicaid for those with special needs. I didn't feel guilty using it because that is what it is there for. To help.

      I promise you that I am nothing special. I was pretty selfish up until my mid-twenties. As with anything, you grow as you go. You become the mom that can handle anything! Just think about the first child you had...did you feel ready to even be a mom? I sure wasn't when my oldest was born...I was 22 years old and he is 11 now. I learned as I went. I was even better for my daughter who is 6 and by the time I had Trent, I was even better. But I still had to become the mom of "a child with Down syndrome" as he grew. I'm still making progress and he is three. We never stop progressing.

      At the risk of sounding corny, you love your baby already....you felt love even before you saw his/her mouth opening and little tongue coming out...that reinforced your love. So let love be your guide...not outdated medical advice, pushy doctors, or even us moms. Just the love in your heart because when has love steered you wrong? Mine never has...it may have given me a bit of pain sometimes but it was never wrong. We obviously all hope you keep your baby, there is no denying that. I also hope you find some peace during this time of contiplation. I'm sorry that you are in pain right now. :(

      If you decide to keep your baby, find doctors that support your decision and rejoice with you. Clear out that negativity. Love and prayers for you Nicole! And virtual hugs.

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    7. One more thing, this is the link to the Down Syndrome Society near you. Contact them. Meet some families face to face. See a baby with Down syndrome. See a toddler. See an adult. See the moms and ask yourself if they are more than you are...do they have something special you don't? I bet they are just like you. :)

      http://www.dsamn.org/contact

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    8. Hi Nicole- I did not reply earlier because I did not feel that I could add more. I will say that I have a son with DS. A lot of people describe their children with DS as "the light of their life". It is amazing how many people spontaneously say that! It is so true. I hope that you get to feel that wonderful life warming love! You and your family will be changed forever in a very positive way! I promise! I did not know that my son had down syndrome until he was born. He was born on a holiday. A nurse at the hospital told me that I must be special because God only gives these babies to special people. I probably gave her the ugliest look I could conjure up! It took 7 days to get the results. I cried before I got them - I knew in my heart. I cried and cried and cried for weeks when I found out. My SIL called me and asked me if I was ok? I said "no!" and hung up! Then I did research. I came upon the poem "Welcome to Holland" (glad you read that) and then I read that babies with DS are just babies. I started to feel better. Then one of my friends arranged a meeting with me and a mom and her son with down syndrome. He was so dang cute and loving and fun. He just made my day! Then I cried because I felt so bad about crying... Now I cry because I am so proud of my son! He is amazing! When he hits a milesotne, WOW! So much more special! We celebrate him! He just turned 4 years old. He works so hard. We started therapy at 6 weeks. I am not mother of the year, but he teaches me. I have learned how to love deeper and he teaches me patience. It is amazing! This is such an amazing journey. I hope you join us! You won't regret it. I know how you feel now, but I promise you will not regret it! I am not saying that it is easy. It is not, but so worth it!

      On another note, my sister lives in MN. I know through her that there are services you can recieve through the state. It typically does not matter what your financial status is, because your baby has DS, you qualify. You will get the help you need! Please feel free to email me or find me on facebook! I pray for you to make the decision you feel in your heart. Jamie Rogers (Imjme4@gmail.com)

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    9. LOL! How is that for not saying much... :)

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    10. You can do it. I was in your shoes... I really was... and 3 years later I am ashamed that I ever considered abortion or adoption. The Medical community is crap. I did not think I could do it. And now my beautiful, vibrant, intelligent, playful and stubborn Gabriel is the best thing I have ever done. Every one absolutely loves him as everyone in your life and who will come into your life will love this baby of yours. It's not a joke... honest. It's a blessing... that baby will teach you so much about life it will amaze you. And your daughters will love this baby fiercely. Trust your mother's heart... not your head. YOU CAN DO THIS... I promise.

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  44. Oh, here is my email address :)

    nicolepete@gmail.com

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  45. Dear Anonymous,

    I too received a prenatal diagnosis and crazy but my ob told me at 12 weeks. We did the Amnio at 16 weeks and it was confirmed. We will all tell you how much our children have changed our lives. I can also say honestly that I had a moment when I too thought about not going through with the pregnancy and I cried and cried and cried. You will have a million emotions. I don't regret one thing I thought or anything we have done. I have a beautiful 3 year old son that I wouldn't trade for the world. I talk to a lot of new moms and I always tell them that there will come a day when you don't cry and then they happen more often then you will no longer cry and yes I know it is hard to believe but there will come a day when you wonder wow why in the world was I ever crying???? I will say that we are very lucky we have a very healthy little boy who is doing great. Some people have a lot on there plate but I have never met a parent who would not tell you that their child with Ds has enriched their lives and I also tell people that I feel like God has opened a window and I truly get to parent the way everyone should get to! I enjoy all the little things and sure don't get upset over the small stuff. Follow your heart!

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  46. Nicole, Ive been where you are...only I was 23 weeks and told I only had a few days to abort by state law. I was pressured to...but I did not. My Elijah is 6 yrs old. I deal with DS BUT, that is not our BIG issue. He is also deaf (genetically) and has Autism. He is getting ready to transition to kindergarten. He is walking, (sometimes signing), he loves Elmo, he loves to go to school, he loves his family, and plays with books. He does not talk, but he is deaf. He does everything they promised me he wouldn't. All of the kids at his school LOVE him. His little sister loves him. We all love him. Thank you for being honest and reaching out for support. We are all here to help you along. Please contact me on FB or by email (elishasword@yahoo.com, Elisha Sword), if you'd like to talk further. Hugs lady...it gets easier.

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  47. I can tell you I have a very cute little six year old with DS and she has done so much for our family see we have three others with autism and having her has changed our lives it helped my oldest get the early intervention that he won't have unless I was told about the EI state program. She also helped her twin who got very early intervention and he is almost typical today because of it. Her younger brother benefits from her great social skills. Doctors will tell you your child may never walk or talk but in the end they don't know it all. Katie doesn't talk yet but she does communicate in ways I never knew she would. No its not an easy journey but I never reget have my little one. I know she was sent to us for a reason. We recently moved across country and you will never believe how many people know her very well here. She get invited to all the birthday parties, we have kids come over all the time to play with her and all the kids are learning sign language just so they can talk to her.

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  48. Nicole thank you so much for seeking out advice and knowledge. Ian is turning four this spring and has made my husband and I and our other two kids better people in ways I never would have imagined. I encourage you to look at the gigi's playhouse website as well as nads. If you really feel in your heart of hearts that you cannot raise this child I hope and pray you will consider adoption.

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  49. NIcole,

    First off, congrats on your baby. I'm Jaime from Jaidin's Journey, the blog that Megan (Team Lando) made reference to.

    I want to say that I have always been very pro-choice in my life, I am also a lesbian. My partner and I decided to have a baby. We tried for 2 months, the first month we were off on timing but it happened the 2nd month. We are beyond excited. At our very first OBGYN appt, they handed us a paper that described what would happen at each appointment. We were reading it over when it got to a point that talked about testing. I had absolutely NO idea that down syndrome was even a consideration for testing, we knew NOTHING about it. After reading that our conversation went something like this:

    Me: If the baby has down syndrome we will abort without a doubt. I highly doubt we could be that unlucky though.

    Jen: Yes, without a doubt, we will abort. I don't want a baby with down syndrome.

    Me: No way.

    Jen: That will never happen anyway.

    Well guess what? About 17 weeks later we found ourselves in the perinatologists office because they had found that our son had echogenic bowes, a marker for down syndrome. We still had that same mindset...Abortion, abortion, abortion.

    Sure as hell, that amnio came back positive for down syndrome. It happened to ME....me, someone who could never be so "unlucky". How?!! We are young, we are in our 20's!!!! We saw that little boy's heartbeat..His arms and legs..We saw everything. We felt him kicking (we received the diagnosis at 22 weeks). We were handed a number to a doctor that performs abortions down here. We went back and forth on what we should do. Mind you, we believed in abortion. But did we believe in abortion of our OWN child? "yes lets just abort"... "No, we can't, this is our baby boy". Ultimately we decided to love our son no matter what! I am thankful everyday of my life that we made this decision. I could not imagine my life not looking into those big beautiful blue eyes of him for that past year.

    The decision is up to you. I promise you that it is not as bad as it seems. It is amazing. Sure, we go to therapy for him but who cares?! I will do whatever for my little man. He doesn't suffer one bit. His only medical issue has been a cold..One single cold in 11 months. We are both FULL TIME students, we have no extra crazy amount of bills that society seems to think goes along with down syndrome..Hell we even have annual passes to Disney world. Yes, my little guy is 11 months but he has been twice, his third time is coming up in 2 weeks.

    Life is NORMAL...LIfe is AMAZING... Life is LIFE..down syndrome or not. The choice is in your hands. Everyone has to do what is best for their own family. If you need to talk, feel free to email me.

    Jaimeharman@gmail.com
    or
    Jaimeharman.blogspot.com

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  50. Hi Nicole,
    I am not sure what normal is but I sit here typing up a midterm exam for a biology class i teach at a local college. I am also entering a purse party that needs to be in by tomorrow night. I set up a photo shoot today...first one this year...exciting Spring is right around the corner. Even better is I spent most of today planning our Disney trip....26 days and counting. But here I am...being drawn back to you and your baby...and my heart cannot ignore.
    My son, Nolan, has Down syndrome and I have a daughter Fiona who is 3...going on 16 LOL. My life is busy. I don't think though I would be doing anything differently if my son didn't have Down syndrome. I always wanted to be a SAHM and that is what I am...with a few side jobs ;)
    Just know...the feelings you are having...we all had them. The good, the bad, the ugly. I had a 99.9% chance my son would be fine...and he is! It's all how you look at it. Yes, he has Down syndrome..but his life is worth living. Here is a montage I would like to share with you. http://www.onetruemedia.com/shared?p=41811d19928d655419aea&skin_id=701&utm_source=otm&utm_medium=text_url
    Know this, we are all thinking of you. We will tonight going to bed...and in the morning when we wake up. We have been there...it hurts...it hurts bad. I think this is why we are so drawn to it bc we don't want you to feel alone. Do not think we are here to blow smoke up your ass like some others might say. Life is not easy...Down syndrome or not. Either path you take won't be easy. Reminds me of one of my favorite quotes by Robert Frost~I took the road less traveled by, and that has made all the difference.
    Another one I think of often is "You must give up the life you planned in order to have the life that is waiting for you." by Joseph Campbell.
    Good night, Nicole. {Hugs}

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  51. oh boy, my youngest is now 7 1/2 and I was faced with the same decision. I am not pro-life either, but I planned for her little life and I wanted every part of her and I am so happy that I made that decision. She has taught me so much and I learn from her everyday. She is surrounded by so many people that care about her and I couldn't be happier that she is in my life. Don't get me wrong, there are tough days and tough weeks, but I have them with my oldest daughter as well. Someone said it well, there are no guarantees in life. Anything could happen at anytime to any one of us rendering us with some sort of issue, long-term illness, disability, etc. and with a little help from this wonderful DS community, you can prepare yourself for what is to come. There are always what ifs and we all have them, but there is more joy in my life with my sweet little girl than anything else. Someone once said that I was given Avery because I was strong enough to handle having a child with special needs, but I firmly believe that as an everyday mom (without a cape) that I simply rose to the challenge...we all did.

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  52. Nicole, I'm sure I'm not the only one but I wish I could give you a big hug!! We did not know in utero about our precious girl. We knew it was a possibility as out son is carrying the "gene" (he doesn't have DS). We found out shortly after Brooklyn was born that she had DS I was terrified I had another "broken" baby (my son has a rare disease, autism, and sensory processing disorder), to be honest I cried the whole night even as she was being transported to the nicu in Tacoma and I had to stay behind. I fell in love with her from the beginning and even though I was scared I knew she was ours and that the Lord had trusted us with this beautiful angel of his. She is now 6 months old and the light of our lives along with our son. We will be praying for you! You can e-mail me @ sweetsnstuff at rocketmail dot com or add me on fb if you have one <3 <3

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  53. Nicole, congratulations on your beautiful baby! There are so many Momma's ready to support you should you need it. This is a scary time filled with lots of uncertainties. Really, isn't that what parenthood is? We found out our daughter had Down syndrome a few weeks after she was born. Boy, we thought some things I never imagined we were capable of thinking. But you know what, our life rocks! We may have one or two extra appointments now and then, but that is OK. Most of our time is filled with gymnastics, playdates ( with kids who do not have an extra chromosome), trips to the park, family date nights, and many other amazing activities. We love our journey and I am sure you will too. We are all here for you! As you can see, many people will have you in their thoughts! Hang in there! Best, Shannon

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  54. Dear Anonymous, My son Benedict is nearly 8 years old and has Down Syndrome. He has a big sister, Larissa, aged nearly 10 who doesn't have Down Syndrome. After the birth of my son I was frightened, confused, sad. I was "afraid" of Down Syndrome, afraid of not having a "perfect" baby. Okay now we are 8 years later. How is our life? Wonderful, amazing, full of love, funny, loads of laughter, joy ...... no, we aren't straight out of a soap powder commercial. We also have arguments, worries, stress, running the kids here and there for hobbies, trips, friends, yes and speech and physiotherapy ..... those last 2 are for Benedict - Larissa wishes she had them too as they are so much fun. She has come with us sometimes and loves it. So I would say we are a normal family with that extra little something - and that little something is a superstar in the family - Benedict. He is A M A Z I N G !!!!!! Just you wait and see - you know that little wave and that turning towards you and looking at you and that thrill you got ...... well multiply that by billions for you and your husband and other kiddies and that is what you will feel every day just because of your little special baby, just waiting for the chance to show you what life is really all about. I wish you great joy in your pregnancy and the belief and strength to give your baby a chance to love you. Lots of love Clare. Oh yes, my name is Clare Greenhalgh Dierkes on Facebook and please request my friendship as we are all one big family.

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  55. Hello Nicole. Thank you so much for sharing with all of us. My daughter, Lily, will be 4 in May. While Down syndrome is not something we expected, we embrace it. Lily is truly a light in a sometimes dark world. Know that my family will be lifting you up in prayer.

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  56. Hello Nicole! I just wanted to comment and say that one of the most beautiful things that will happen to your family is to watch your two girls love your baby unconditionally. Many times that will help your heart heal to watch them love the new baby with no judgement, just pure love. I loved watching my son accept our daughter. Now I watch our daughter (almost 3) love our new baby. She is an amazing big sister! My kids have such an loving amazing relationship, normal in every aspect. I know that little wave was your baby telling you that everything is going to be ok. I don't have a blog personally but check out a couple of my favorite...http://pudgeandzippy.blogspot.com/ and http://www.kellehampton.com/ both Moms have great blogs. You and your husband can do this!! Love will guide you in raising your child just like it does with your two girls. You are already fighting and advocating for this baby. Keep fighting, praying and loving your baby Momma!!

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  57. Nicole- I posted earlier- and I know that so many parents from around the world are here to support you. I have over 700 friends on FB, and about 500 of them are moms and dads of children with Down Syndrome. There is such a great network of parents- and that is something that I wish I had had just 6 and a half years ago when I was pregnant. We are all praying for you and your family.Please feel free to request me on Fb if you would like also. Johannah Bruns Back.

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  58. I'm just stunned at how many people have responded an emailed me. I felt so alone with my thoughts and fears. I know we don't have a diagnosis yet, but our odds are not good, so I felt I should prepare myself now, rather than waiting until our world was turned upside down again. It's amazing how willing people are to talk to a total stranger, how so many of you can feel my pain, my fear, my sadness, my uncertainty. Today was the first day that I woke up hopeful that life might be alright with this little person whom we wanted so much...no matter how many chromosomes he / she has. I wish you all lived closer as I feel pretty alone up here on Lake Superior (minus the blizzard that's currently dropping 16 inches of snow at my house as I type). There's a Minneapoluc chapter for DS, but that 155 miles away. I feel, after talking with you all and hearing your stories, that the phonecall from the geneticist won't be as painful as I imagined. I'm so glad to have found this site. The other day, a patient said to me, 'You know honey, God only gives these babies to special people and you're a pretty special lady'...I wanted to believe her...and now I think she may be right :)
    Thank You All
    ~Nicole

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    1. I meant to write ' a Minneapolis Chapter for DS but that's 155 miles south of my home'

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    2. How far are you from Hibbing? I have a friend there that has a child with DS.

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    3. And I'm so happy you can feel the love. This community is amazing and mighty. ;)

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    4. I'm in Duluth, so Hibbing is about 80 miles north of me :)

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    5. Oh Nicole, I'm SO HAPPY to read this!!! You will be a wonderful mother to this baby...just as you already are to your other two girls! If you have a facebook, add me: Holly Guillory Fedele. I have a blog as well, but it is new and has very little in it. Still contact the local society because they may have smaller chapters near you or at least can put you in touch with a family near you.

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    6. OH tears running down my face to read your post Nicole!! As Bethany and so many others have shared, our community is nothing short of amazing and strong....we are mommas that are fearless for each other and our kiddos. There's nothing that none of us won't do for one another...so that is the reason for so many people responding to your need for advice. As I said in my comment above somewhere (LOL!), I have never heard any mom ever regret having and keeping their child...everyone always says how much of a blessing their child is to them and their families...

      Once you find out for sure, and even if the test is negative, join FB if you haven't already, and you will be scooped up by hundreds of women (and some dads too) to help you in any way possible and join you on your wonderful journey! You may feel like you are alone now, but there is a cyber community that will become like family...it's a wonderful thing and a privilege to be part of it! Any questions you may have will be answered in seconds...it's better than having a doctor on speed dial! And we all love looking at photos of our kids...and reading about all the milestones. So we're ready when and if you are...

      I'll be praying for you!

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    7. Hey, Nicole. Did you just say you're in Duluth? I've heard there's a pretty big group there. http://www.downupnorth.com/
      Looks like there's a moms night out on Monday, if you're feeling adventurous! :-)
      I haven't met anyone from Duluth (I live in Eden Prairie). But I've also heard that there are about 1,000 at the Step Up for Down Syndrome walk in Duluth (last Sunday in September, the same weekend as the one in St. Paul), so that tells me that there's great community support up there.

      Please let me know if you get down to the Twin Cities. I'd love to show off Micah. He's a hoot and a half... STRUTS into preschool in the morning, thinking he's big man on campus, waving to everyone he passes and saying, "Hi, Miss Katie," etc. He was the first kid in his 3yr old preschool class to know the names of all 20 kids in his class (my SIX year old "typically-developing" kid doesn't know all the kids in his class!). He also entered preschool knowing his upper- and lower-case letters, colors, numbers to 12, and shapes (though rhombus is a bit confusing... he still wants to say diamond... can't blame him!).

      Life has not been "easy" with Micah, but it's been more rewarding than I can put into words. He didn't walk until he was 3 1/2 (I won't go into all of the medical reasons behind that particular delay). He's small (still in 18mo pants at age 4) and he doesn't like to do art AT ALL. But even the grumpiest person will smile when Micah laughs. I can't tell you how many strangers have told me, "He just made my day!"

      If I remember right, your odds are about 1:20? So, odds are against you getting blessed with a child with Down syndrome. But I love how you have been seeking information. At the very least, you've been introduced to a super great group of parents whose strength and courage astound me daily. :-)

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  59. Nicole - I fell upon this blog today, and I am so glad I did. I was in your shoes a little over 2 years ago. We were given a 1 in 5 chance for DS after my first trimeter screening. We decided to go ahead with the amnio at 18 weeks and our daughter's diagnosis was confirmed. I can tell you that waiting to hear the results was actually worse than "the phone call". Yes, I cried and cried a lot. I was scared and angry and worried so much about my older son. I can tell you though that I would not change a thing about my daughter. She is 2 now and walking around and pushing limits, jut like any other 2 year old :) I have seen a side of myself, my husband and my older son that I never thought I would. Every day is not easy, but I can promise you that there is nothing terrible about DS. Wishing you comfort in your waiting time.

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  60. Nicole, you are so right about feeling alone, but there are truly some amazing families that are so willing to share their experiences with you. I found Downsyn.com after my Avery was born with DS and this group (Bethany and many more of these women that responded so far to your posts) really helped me to deal with my thoughts and feelings. I am forever grateful to them for the love and support and now I have started my own support group in my area and I am happy to lend a helping hand to my extended family in their journey. I do have to say one more thing about siblings...I was fearful that this was a heavy load on my oldest daughter and it turns out that having a sister with DS gave her so many things:patience, strength, understanding, acceptance, and a voice. She is Avery's biggest advocate and she loves her little sister dearly. Avery has enriched all of our lives and while I still have the "what-ifs" once in a while it is quickly squelched by all the love and compassion that we have all gained by living with our little sweetheart! So happy to hear that today is a better day for you. It does get better and easier as time passes. Until one day you get ready for bed and realize that you didn't even think about DS that day...it really does happen! Good luck to you!

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  61. christina lejeanMarch 1, 2012 at 3:06 AM

    dear annoymous,my daughter yvette is 32years old and has DS..i didnt find out until she was 5months old..was i disappointed ? yes i was . was i scared of the unknown? yes i was .i had a very traumatic pregnancy and lost yvettes twin about half way through .after i found out about yvette having DS i went into a period of why me ,how will i cope..what will her life be like..yvette isnt as you have said high functioning but she is a very happy young lady and we do all the normal things together going out for meals,going to parties,going to the pub fora drink,taking the dog for a walk etc ect...ok she has never been able to work,read ot write but she has a memory span that i would be proud to have...now the big question to abort or not .imo no you should go ahead with the pregnancy..why you may ask..if you dont you wtll never know the neverending love and pleasure your baby will bring to you..

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  62. christina lejeanMarch 1, 2012 at 3:12 AM

    imeant to say enjoy ur pregnancy ..remember there is a huge community of families out ther with a child/adult who has DS...you are never alone .yvettes aunts,uncles and all my friends love her to bits ..i am on fb and found you through another mum in my network of mums from around the worls..love and hugs from across the pond ..

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  63. Nicole,
    I am so happy after reading your last post. Chills down my body. We are all here for you!

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    1. Thank You :) I got your emails and generous offer. Everyone has been so helpful. I'm still amazed.
      ~Nicole

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  64. Hello Everyone-
    So we had our amnio done on Monday and today is the day we should get our results for T21, T13 and T18. I don't think I've ever been so anxious in my life. If our baby has DS, hopefully I can contact many of you for support. I've already done that with some people. If our baby does not have DS, I may be here inquiring in the future about heart defects as I'm sure some of you have walked that path. There is a chance that our baby may not have anything I mentioned above and in that case, I thank you all for such support. Had I not come here, I may be in a very different place right now. I'm sure you all know how great it feels for another person to just simply say "I know where you are. I've been there and I'm here if you need to talk" It's so much more than words and I can't thank you all enough for being so kind. I'll let everyone know our results once I compose myself enough to share.
    ~Nicole

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    1. Hi Nicole -- thank you so much for the update. I have been wondering when your amnio was. No matter which way the pendulum swings -- the most important thing is that you love your baby. Everything else will fall into place. :)

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    2. Hi Bethany-
      Today the genetic doctor called and said we were all clear for T13, T18 and T21. We certainly were not expecting that but are pleasantly surprised. We will go ahead with heart testing starting in 3 weeks. Again, all of you are amazing women and mothers. You helped me accept what was on our plate and have changed my views about Down Syndrome. I'm so glad there are people like you all in the world to help people like me and others. Blessings and Much Love ~Nicole

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    3. Thank you so much for the update and even more so, for your kind words. Best wishes to you and many prayers for an uneventful pregnancy from here on out! :)

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    4. Nicole, if your little one ends up having a heart defect, many of us have been there, too. We're still here for you! :)

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