A Mother Speaks Out On Down Syndrome: “There’s Nothing Down About It!”

While I was pregnant I would sit on my bed and look at Riley’s name printed on the wall. I felt that something was a little off. Nothing was wrong, but something wasn’t right. How neat it was that I knew she was special before I even met her…

Meet Riley!

Jennifer peaks her head into the living room where her three daughters are playing house. Sarah and Jaimee giggle as they push their little six month old sister, Riley, around in a carriage that is supposed to be for their baby dolls. Riley simply smiles at all the attention. “Mom, come look at Riley!” they suddenly exclaim, “she is smiling!” From the doorway, Jennifer can’t help but smile herself at the scene. In her eyes it is nothing less than picture perfect. Her children are right where they should be… with her. But, if some people had it their way Riley wouldn’t be here. Why? She has Down- Syndrome; Trisomy 21 to be exact. Which somehow labels her as less deserving of life by many in today’s society.  What a loss for them. They have no idea of the joy that comes from having a child with “special needs”, but Jennifer does.

This is her story…

We tried for nine months straight, after just having a miscarriage two months prior. Then, it happened. I knew I was pregnant because of the dreams I was having. I’m a very vivid dreamer and I find out many things in my dreams. On December 23, 2010 at 12:30 AM, I got out of bed to use the bathroom. I then decided to take a pregnancy test, because I was a few days late.                  It was such a methodical routine: pee cup, pee, dip, wait, negative, smile, try again. Nine months of that routine resulted in thirty tests bought in that time span. Yea, I tested a lot! This time was different, though. Even though there was a faint line, I threw it out because I had had so many negatives in the past. I had grown accustomed to being disappointed. Then, I thought, “Let’s take a look at that again.. just in case”. I can still see my hand reaching back into the garbage can to retrieve it. There it was. Positive. I couldn’t believe my eyes. I stood in the bathroom looking at it from every angle for at least fifteen minutes. I kept saying to myself, “It doesn’t matter how faint a line is. A line is a line!” Best Christmas present ever!

Fast forward to my fourteenth week of pregnancy where an ultrasound detected my placenta was low and they needed to watch it. If it didn’t move I was told I would have to have a c-section. As they were monitoring my placenta monthly they found “soft markers”, which can be an indication that the baby could be born with Down- Syndrome. (Both non Down- Syndrome and Down -Syndrome babies can have these markers). Immediately, I responded with, “They are going to go away.” And they did.

After my doctor informed me I had those markers, I had blood work done to see if I was “high risk” for Downs. It turned out I was, so the doctor took the liberty of informing me that I still had time to kill her. Are you kidding me?! I’m twenty-two weeks along and I have THE RIGHT to kill my baby? Who gives me that right? Needless to say I couldn’t even find words to say back to him at first; then I almost vomited. My response is what you can imagine if you know me. To this day it makes me sick that I had the choice to end my child’s life because she might have Down- Syndrome. I shouldn’t have that right no matter what the case is. 

Along the way people would tell me that I needed to read about Down Syndrome and all the “bad things” that go along with it, to prepare myself. NO! I was prepared. Negativity was NOT in my plan for Riley. 

On Monday, August 15th, 2011, I was thirty-six weeks and six days along when an ultrasound detected that my amniotic fluid was pretty low. Riley was likely to come that day! I told my husband, Brett, who was still at work, to wait for my call just in case they decided it was not time yet. 

But, no, it was happening! I called Brett and the nurse prepped me for the surgery.

The trip to the OR seemed like it took forever, but we finally got there. Instantly, about five different people started working on me at once. (The spinal was WAY different than the two epidurals I had with my other two girls). I was strapped and drugged when Brett came in. Slice, cut, pull and she was here!!!

I do not remember being wheeled back to my recovery room because I was so heavily drugged. I DO remember, though, my poor husband coming into the room crying. The NICU head doctor had just informed him Riley had Downs. Brett had forgotten that I was at “high risk”. Apparently, he was admiring Riley through the glass as they were bathing her. The doctor came up to Brett and said “ You’re aware of her condition right?”  I was so upset the doctor did this to my husband. That’s how you tell someone? In an abrupt and cold manner, while they are not with their spouse? I remember being mad and certainly distressed for Brett’s sake, but I told him he had to try to stop crying. Our two young daughters were going to be coming in and I didn’t want to worry them. Yet amidst all of this confusion, I just sat there smiling. As I looked down at my precious baby I couldn’t see anything different about her at all. She was perfect from head to toe. Then, they took her from me.

“She’s not eating”, they told me. Well no kidding! She was just born, tired and wanted her MOTHER. I kept begging the nurse to tell the doctor to bring her back to me so I can feed her. The doctor who knocked my husband through the floor would not bring me my child. That darn spinal took hours to wear off, so I couldn’t drag myself down there to get her myself. I had delivered Riley at 5:25 PM and it wasn’t until after 2:00 am that a nurse took compassion on me and brought me Riley.

At 10:00 AM they heard a murmur in Riley’s heart and said it could be a hole. They stood there telling me how Downs children are known to have heart defects. (blah blah blah) “ Not listening, I’m not listening ”After crying for about 45 seconds I pulled myself together and told them she is going to be just fine. Well, later that day around 6:00 PM I was informed that the tests showed a normal murmur. Her heart was fine.

The next morning they took her from me again. This time she was admitted to the NICU, because she hadn’t truly pooped yet. My mother-in-law was with me at the time and we walked down to the NICU together to see what was going on.  Once again they began telling me how some infants born with Down- Syndrome have bowl problems and that she may need an operation if she didn’t poop soon. If this operation had to take place, it would be weeks before we could really start to feed her. After hearing this, my tears started to flow. Yet, I refused to believe what they were telling me. “I can’t hear you” I said to myself, “It’s all rainbows and butterflies”. I looked up at them and said that she was not going to need an operation.  Two hours later, she pooped! Riley still needed to stay in the NICU until we went home with her, but I was able to start feeding her about twelve hours later. 

The next few days were a blur. They were filled with countless hours spend in the NICU trying to get Riley to drink some breast milk so she could go home. I remember the nervous looks on everyone’s faces during those days; but I just smiled and knew that all would be fine. I was so excited to have a child with Downs, and I made sure everyone knew it!

I told doctors, nurses, friends and random people who I passed in the hospital. Didn’t matter if they wanted to listen or not, I told them anyway! You should have seen all the doctors’ faces when I would talk to them. It was like I was consoling THEM! It was great! They didn’t know how to react to me. Everything they had to say about Down- Syndrome was negative. So, with every one of their negatives I came back with at least 3 positives. It felt so empowering. I was like a rainbow on steroids!

After six days, Riley was finally able to come home. I will never forget where I was when I got the call.  If anybody was to ask me if I have ever won anything, my answer would be yes. I won the lottery the day Riley was able to come home. Having to leave the hospital without my baby was the hardest thing I ever had to do in my entire life. 

As we were being discharged a doctor told us that they had received the chromosome blood work back. With this scared look on his face he confirmed that Riley did in fact have Trisomy 21. My immediate reaction was a great big “YES!” with a fist pull down through the air. I can still see the doctor’s face. At first he thought I was confused and misunderstood him. Oh no, he was the one confused, not me. He and my husband both looked at me a little funny, but hey I’m used to that.

Riley is now six months old and she is the happiest baby I have ever known. She has defied all the books and the people that said she would be “delayed”. My daughter is right on track. She does physical therapy, speech therapy and a little massage therapy throughout the week. (Her physical therapist is continuously amazed by her and can’t believe she has Down-Syndrome)  Riley loves music, swinging in her swing and being talked to.  But, she absolutely detests baths! She also has two awesome big sisters who take such good care of her.  I couldn’t be a more proud mother.

So, if you are blessed to have been chosen to have a baby with “UP” Syndrome, or you know someone who has… SMILE! It’s the best thing that will ever happen to you. It’s a shame that our society and doctors are blind to this. Oh well, Riley will open their eyes!

Jennifer has started a support group on Facebook for all those who have been touched by children with “UP” Syndrome. Check it out and join the movement!

75 thoughts on “A Mother Speaks Out On Down Syndrome: “There’s Nothing Down About It!”

  1. This is article is absolutely beautiful. I do not have kids but I am blessed to work with special needs preschoolers all with different “disabilities”. I have one little “Up” sydrome girl. She is so sweet. Yesterday, while waiting for her mother to arrive to pick her up after school we looked at different books together. I wasn’t expecting her to come sit down beside me. She just did. She had a big smile on her face as she flipped through her book. She kept going back to one page in the book. It was a disney book and the page she kept going to had the Native Americans from Peter Pan on it. I live and work on an Indian Resevation. Though the picture was a cartoon and were dressed in ways Natives do not dress anymore, I am certain she could tell that the pictures were depicting people like her. She just kept smiling and pointing and every time I looked away she would tap me to get my attention again. I haven’t been working with her for long but her smile and her sweetness has already captured my heart.

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  2. I have a large family, and two of my relatives (an aunt and an uncle) have Down Syndrome.  I love them both dearly, and they are wonderful people. I just think parents need to understand that there can be complications that come along with Down Syndrome (it’s not all smiles and rainbows) so that they are fully prepared. My aunt has had to have a few surgeries, while my uncle has not. 

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  3. A few years ago I worked at a dialysis clinic, and my blessing was my little girl, a patient who had Downs. She was in her fifties but, due to her ‘delay’ she wore little frilled socks and little girls shoes (she was quite small) and the most adorable little dresses. One year for Valentines day I asked her if she was going to paint her nails, she replied “No, silly, I’m a little girl!” For those of you who don’t know, dialysis requires that two 15 gauge needles be placed in a patient’s arm for about three hours, while their blood is cycled through a machine. It’s a gruesome miracle. Three days a week she came in smiling at me, laughed while the nurses did the pre treatment exam, then calmly put her life in my hands. She knew I was going to ‘poke’ her. She trusted me to do my best to make it hurt as little as possible. Every day that I saw her I was humbled by what a blessing she was to all of us, by simply being alive. I can’t believe that someone would think that to kill a baby that could end up being like her could be better for anyone. 

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  4. She couldn’t be any luckier to have you as a mother and you couldn’t be any luckier to have her as a daughter. This really opened my eyes and your story is beautiful and she is absolutely freakin adorable! I couldn’t help but cheese really big when I saw her picture, I didn’t even know at first that she had “up syndrome” but I am continueing to smile at her, congrats and thank you for sharing your story! I love my daughter so much and would be just the same if she had any disability! 🙂

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    1. Don’t know why it posted my email as my name but my name is Alicia, lol.

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  5. the most beautiful people in the world are labeled with this syndrome. they are the happiest and most positive people you will ever meet. the word “delightful” was created just for them, and they will bless your life beyond measure. oh, that we would all be as loving and giving as they are! this story proves that God gives special people to special people.

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  6. I’m twelve but i have a 2 year old cousin with down syndrome and hes gorgeous, god bless you for caring!

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  7. I work in a children’s hospital and I see many patients with Downs! They always make me smile with their loving, happy demeanors! Usually I get a hug and a thank you and an enormous smile which helps me keep this crazy world in perspective! I can’t imagine someone suggest you kill that baby at all and especially not at 22 wks! Yikes! I’m so happy that she has you for a mother! You’re a blessing! 

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  8. while i was readin this,i started to cry. i cant believe a dr woud tell u that u still time to get rid of her. while i see these pics icant help but smile and also cry, but happy tears for the both of u wonderful girls. i hope more people can bemore like you guys. i wish you the very best and congrats on havin a beautiful baby girl. keep up the GREAT work. i know she will prove everybody wrong.

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  9.  I’m happy that you are happy and doing a great job of mothering this young girl. I am a bit confused by your combative attitude toward the medical personnel, though; you are fortunate that the negative predictions were false, but in many cases this is not so. They were not trying to be cruel, but to give you proper warning so that you would not be crushed if your baby needed an emergency surgery, or had horrible heart complications, etc.

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  10. What a Wonderful story. absolutely brakes my heart that some one would kill their baby because in society’s eyes they aren’t “perfect.” If your a mother or a first time mom, you should think that YOUR baby is perfect, No matter what. I know i could ever kill a baby, downs or not

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  11. Awww, this is absolutely precious! It’s a shame how society says that babies with downs are less valuable. They are some of the most beautiful people I’ve ever met. Thank you for sharing your story!

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  12. Jennifer, we are twins! I am the same way as you! Thank you for sharing your story!!!

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  13. I don’t think a little girl could be cuter. Concerning article I couldn’t agree with you more.

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  14. I know of a adorable, sweet little girl with Downs. When her parents found out she had this ‘condition’ her mother wanted to abort her but the father refused and eventually won out by committing to being the one to take care of her completely (sick of the mother, i know). The parents marriage didn’t last and although the mother was granted custody of her and her older sister, it’s only for the child support money and ‘disability’ payment she has signed her up for. This child has hit every milestone with no delay. 

    It’s a shame that society has labeled these children as defective. 

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  15. What a Testemony!
    My little brother (who is 45 now) has Up n I can remember when he was two years old n took his very First step on his own.
    I had my first fight (met at the school flag poll) bc a girl was making fun of him
    I would take up for him if my mom disiplined him (bc she said even if he’s not exactly like us he still needed to be disiplined 🙁 spare the rod spoil the child)
    N to this day I’m here for him
    I am waiting for things to be finalized, n I will officially be his guardian!!!
    I feel VERY BLESSED to have this opportunity “Rudy” is an amazing brother

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    1. Love your story, I hope your little angel Riley has an Amazing life. She’s def in good hands.
      Thanks Jennifer

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  16. THANK YOU EVERYONE FOR YOUR VERY KIND COMMENTS ABOUT OUR RILEY!!! COME JOIN MY GROUP AND MEET ALL THE WONERFUL MEMBERS!!! BIG HUGE HUGS TO ALL OF YOU!!! <3

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  17. How sweet! What a blessing! “Up” syndrome kids are always so upbeat about things, and they give the most marvelous hugs. It’s so sad that people argue to kill of all of them. Thank you for sharing your family’s story Jennifer!

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  18. Your family’s story is a beautiful and loving testiment to these special children everywhere. Your daughter Riley is so adorable and her smile – so full of joy – has lit UP my day! She has the essence of joy written across her adorable little face and when you can express joy you have everything you need. You can be sure that I’ll never confuse Down with Up again… It’s Up Syndrome for me too now! God Bless you and your family and adorable little Riley and someday they WILL open their eyes:)

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  19. I think that people in genral are beautful and no matter what sort of syndrome we have or don’t have, we can all contribute so much wonder to the world. If only we could all be as happy as Riley.

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  20. This is the sweetest story ever, am I too young to adopt now, but I always have loved kids with down syndrome and hope to be a mother of one some day

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    1. Adopt from the Ukraine!!! Google it! If DS babies are not adopted by the age of FIVE they are sent to live in a mental hospital for the rest of their lives!!!! It’s sick. I want my story published in the Ukraine so these women read it and stop killing and or giving up their DS babies!!!!! I may not be able to change the gov’t over there but I’m hoping to change the women! Then, I’d like build a huge home/facility for all those poor DS people, adults and children, and rescue them from the mental hospitals! This facility will be filled with therapists and teachers an it’s just a happy healthy place to be!!
      🙂

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  21. I am blessed to be the Mamma of a six year old with Trisomy 21.  I wholeheartedly agree with you.  I was just thinking today that with all of the things they warned about her while she was in the NICU…they never “warned” me about the amazing, incredible, wonderful fullness she would add to our lives.  I suspected it and tried to tell them, but they didn’t get it….How could they?  They were sure their was something wrong with her.  I know she IS perfectly designed and a perfect joy.   

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  22. This is so inspiring. I have always been a bit envious of people with downs, because they seem to happy all the time. I remember a group of people with downs came to McDonald’s when I was working and they all came over and were hugging me and saying I was their friend, and their escorts or what-have-you started apologizing and I told them there was no need to apologize. They had all made my day, they really had.  
     I also remember being given the option for an amniocentesis (a procedure to check for downs in early pregnancy) and my doctor said that it’s wrong quite often. So how many babies have been aborted because they were THOUGHT to have downs, let alone the ones that actually did! You are an amazing mom and person! I hope to be half the woman you are! 

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  23. Truly LOVELY piece… My uncle was born with “Up” sydrome, I never got a chance to meet him as he passed away due to other health issues at 7 but from what i was told he was really a ray of sunshine 🙂

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  24. Good for you. She is lovely and lucky to have older syblings to encourage her and love her.

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  25. i love Riley’s smile – its very contagious – i know and can relate to your story because my daughter Anna gave birth to a baby boy with down syndrome  – his name is Joshua Sebastian and we call him Joshie – he is now 1 1/2 yrs old and he is a blessing and brings so much joy to his mommy and daddy and two older siblings.
    we are thankful to God for Joshie just you are thankful for Riley – they are the best thing that can happen to any parent.
    God bless you and your family.

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  26. Wow–keep up the amazing job you are doing!
    As long as mom’s happy, everything will wok out fine!

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  27. She is super cute. God bless ya’ll. Thankful for people like you and my uncle in this world who give us people like your beautiful daughter and my gorgeous cousin.

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  28. She really is beautiful and you can see even in the pictures how happy she is! I was told around 20-25 weeks with my daughter (who is now ten) that she had markers for down syndrome as well..I was told this by a genetic specialist that went on to tell me that I still also had time to abort. And I thought, REALLY? just because she might not be perfect? WHO IS perfect? I was not married at the time and only 19, but even then, I knew how wrong abortion is in ANY situation. At 38 weeks, I delivered a healthy beautiful baby girl that did not end up having down syndrome…I am still in awe that someone suggested killing her just because of a possible “imperfection” in their eyes. I would have loved her no matter what, down syndrome or not, she wasis perfect and special to me. <3

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  29. I used to work at Disneyland as a Custodian.  There were plenty of occasions where I did something to make a Guest’s day a bit more “magical.”  Even if it were something as simple as replacing an ice cream cone that fell on the ground.  My absolute favorite memory, however, was of a young girl name Chiffon, who had Downs.  I noticed her after Woody and Jessie (from Toy Story) had passed by and overlooked her when they were visiting with other children.  I had never seen anybody ‘hopping mad,’ but she was literally jumping up and down she was so upset.  So I went over and calmed her down and gave her a sticker to get her to smile.  Then, I managed to arrange for her to see Jessie one on one later that day.  Both Chiffon and Jessie were so happy they got to meet!  I’ve never seen a happier child!!  I’ll never forget being able to answer her wish.  Making her day reminds me that there are truly appreciative people still and that memory helps me to continue to try despite all the horrible people in the world.  If only more people had the attitude and outlook on life that people with Downs usually have.  I’ve never met one who wasn’t positive and happy.  Doctors tried to convince my mother to abort me due to medical issues she was having and the fear that I might have some sort of syndrome or disease when I was born.  Thankfully she didn’t listen.  I managed to prove them all wrong.  But even if I did have a disease, I would have still been happy to live.  And my mother would not have loved me any less than my brothers or sister.  Your precious Riley is a gift to be cherished.  She has been blessed to be placed in a loving family who cares for her and sees her as how truly beautiful she is.

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  30. My son has UP Syndrome too and he is perfect! There is nothing down about him!

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    1. That’s awesome Sonia!!!! Join my support group!!! I’d love to meet him!

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  31. THIS ARTICLE MADE ME CRY.PEOPLE REALY DONT KNOW WHAT THEY ARE MISSING. SHE IS THE MOST BEAUTIFUL LITTLE GIRL I HAVE SEEN. I REALLY WISH DOCTORS WOULD REALIZE THAT. THANK YOU SO MUCH FOR SHARING THIS WITH PEOPLE IT REALLY IS AMAZING AND GOD SENT.

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  32. This is one of the most beautiful, heart-touching stories I’ve ever laid eyes on. You are a beautiful woman with a beautiful child, and two other beautiful children. I’m sixteen and my twenty-nine year old cousin, Mica,  has a form of Cerebral Palsy,  and he wasn’t expected to live that long (even if it sounds harsh) I was used to hearing that all my life. When I got older and passionate about school around the sixth grade, I would come to my aunt’s house and teach Mica about what I had learned that day, and taught him about spelling, pronunciation, counting, counting money – heck, I even taught him how to count to 10 in Spanish! I’m glad you’re making these kinds of stories viral, and I wish the best of luck for you and your family 🙂

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  33. How new and exciting for you, Jennifer, to be new mommies of such a beautiful child. I too have a 12yr old daughter with downs.You will be in for a journey of a life time with Riley.You indicated on your last paragraph that Riley has defied the odds of being delayed and your therapist cant believe she has downs… the best advice i can give you is acceptance and awareness. With our children, we can not compare there progress and development in conjunction with a “normal” child the same age, because there will be developmental delays, and medical issues. You will come into contact with AMAZING people in your life from Dr’s, teachers, parents, support groups etc that you will be so blessed to have in your life. Thank you for sharing this post…. We are our children voice.. we are their advocates… it starts with community awareness and letting people know and see how normal our children are from what they are”labeled” to be as. 
    May god Bless you and your family!!! 
    Please find me on Facebook and request me as your friend. 
    I would love for you to see my pictures!! =) 

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