Why are we so afraid of Down syndrome?

The grandfatherly man smiled at Kate from the cart in front of us at the grocery store.

“Well, you’re just beautiful,” he gushed.

Kate did what she usually does (if she’s had a nap) and flirted back. Her toothy smile took over her cheeks and her almond eyes turned into half-moon slivers bright enough to light up the night sky.

The man chuckled.

She giggled back.

Kate’s 17-month-old little sister snuggled into her arm in the bed of the cart and Kate wrapped her chubby little hands around her shoulders.

It was a picture-worthy moment — an image as adorable as the cuddly kittens in baskets and chunky babies in cornucopias that we see on calendars in shopping malls.

Was that what I was afraid of the day she was born?

On the car ride home, her favorite song came on the toddler station of Pandora radio. She squealed with glee and threw her hands up in the air like a college kid at an outdoor concert. She danced and did the hand motions all the way home — and at the end of the song, she gave a generous applause with enthusiastic hand-clapping. She’s famous for her generous applause. She’s famous for her enthusiasm in general.

Was that what I was afraid of the day she was born?

Well, of course not.

What I was afraid of was the what-if’s and could-be’s. The statistics and stereotypes. The dismal tone in the doctor’s voice when he delivered the news: “There’s no good way to say this, so I’ll just say it: your daughter has Down syndrome.”

The fear and tears in the eyes of those around me.

I was afraid of the “increased risks” of XYZ — the unsure future — the tests that needed to be run.

I was afraid of her absence when they whisked her away from me to poke and prod and scan and observe — I was afraid of what her future looked like, what our future looked like. And those things are worthy of fear! Any time a world so unknown presents itself at your doorstep, uninvited, fear — devastation, even — is a natural reaction.

But I can’t help but think there’s something more to it.

Because here’s the thing: the number one reason I was so afraid of Down syndrome when Kate was born is because I had never been exposed to it.

I had never seen a family who thrived with a child with Down syndrome. I had never heard the stories of the blessings and the gratitude — the grocery store flirting and the backseat car dancing. And perhaps if I had — then the other stuff? Sure, it would still be scary. But devastating? I’m not so sure.

I’m in my 4th pregnancy now and this one has been especially interesting. I am in a new city — with a new doctor. A wonderful doctor, by all accounts. She knows little about our family — but she does know my pregnancy history, including the fact that my second-born has Down syndrome. But often, I leave my appointments and say to myself, “No wonder people are so afraid of Down syndrome.”

Prenatal tests are pushed with urgency as preventative measures like Tdap vaccines and flu shots. I was asked four visits in a row if I was “sure” I didn’t want prenatal testing: after all, I could be having a baby who has Down syndrome. 

Now I’m not villainizing the tests themselves — many parents do want to avoid a delivery-day surprise of a Down syndrome diagnosis — but it’s bigger than a blood test. It’s the tone. The urgency. The context of conversation. It’s the whisper in language with what could — God forbid — be a positive test result. It’s what lies in the literature that’s handed out on the first day and in the nurses’ voices when they found out I have a “history” of having a child with Down syndrome.

It’s fear.

And it’s contagious.

And it’s the difference between doctors delivering the news as a multifaceted diagnosis rather than a death sentence.

Now I’m not naive, I don’t expect doctors and new parents to feel like they’ve won the lottery (as I often do now). Anytime there are risk factors for your child’s health, there is cause for concern.

But I do feel like the technology for detecting Down syndrome is far more advanced than our understanding of what it means to have Down syndrome — or raise a child with Down syndrome. And for the sake of objective reporting and compassionate care, we should all strive to understand the bigger picture.

There is a reason that the abortion rate for Down syndrome is soaring — while the vast number of parents who have a child with Down syndrome feel incredible gratitude. There is a bridge that’s broken between understanding human genetics and understanding the human spirit. There is a missing piece that so often causes misplaced fear.

Why are we so afraid of Down syndrome?

Because we’re often only told a small part of what is truly a big, beautiful love story.

AngelKate7

124 Comments

  1. This article took me back to the first days of knowing about my daughter, the fear, the guilt, the sadness. That was 36 years ago and its hard to remember that “fear” of the unknown. Beth has grown into a lovely young woman full of joy and love for everyone. Beth works at the local grocery store and goes to adult education every day. Her life is full of love and support and being her mother has been so much easier than I thought it would be.

    Thanks for sharing,
    Audrey Peaty Swisher

    • Suzanne

      This was so well written! After having a son with Down syndrome, if asked, I would never recommend having the tests that can tell if the baby has Down syndrome. If I had known, I would have been so sad during my pregnancy because I knew nothing about Down syndrome except a few images of low functioning people.
      Holding Sam in my arms and receiving the news AFTER I had totally fallen in love with him.. and learning immediately about positive supports for infants and beyond that were available, my husband and I knew we would be okay.

      I cannot express how BLESSED we are to have Sam in our lives. He is So FUN and So LOVING!!! He is Fantastic!!! I want as many people as possible to know him so their lives can be enriched. And, if someone chooses to have the prenatal genetic testing done, they will Choose LIFE for their child after knowing Sam and other people and families with wonderful lives who happen to have an extra chromosome.

    • Terri McIntee Larenas

      Great article. Yes when I tell people about our journey it has always come from about changing other people’s attitudes. My son is 22 now and has taught me every day about being courageous, loving, accepting, unpredictable, about self determination and above all about unconditional love. He added to my life the pieces I needed to feel whole and hopefully make me a better person.
      I remember telling the doctor when he asked about taking pretests – “you get what you get” – how true…….I was ready for this 22 years ago and I grateful 22 years later!

  2. Bonnie

    Thank you for your lovely words about Beth. She certainly is beautiful. The man in the grocery store got it right. My little girl with Ds is 13 now, and I too wonder why is everyone so scared. Blessings to you and your family.

  3. ashley

    Kate is truly such a gift to your family and to the world. And we are lucky that you share her with us. After getting to know and falling in love with people who have Down syndrome, it IS hard to imagine what people are so afraid of. I have to agree you did win the lottery when it comes to having Kate in your home. I hope I get to see her (and you!) and give her a squeeze sometime soon.

    Much Love,
    Ash

  4. Maria

    Hi, Lauren!

    This is such a wonderful post as all your other posts that I have been lucky to read. Thank you for making us see and understand the big picture. You are right, we fear what we do not know. Blessings to you and your family!

  5. Jennifer Taylor

    How well stated! Preston is our joy and one of the best parts of our lives! A world without him in it would be a much less happy place! I really think doctors need some training and exposure to DS families. Our lives are filled with happiness and love!

  6. Debbie Leggens

    Lauren this hit the nail on the head. My son, Scott, was born 30 years ago. I too remember the fear like it was just yesterday. Three months after he was born my husband’s sister gave birth to a son with Down Syndrome too. We hit the jackpot twice! Scott and Timmy absolutely love each other and love and accept the rest of us with NO reservations. Scott wakes up every morning with a smile on his face and sings. There is NOTHING like a hug from Scott and Timmy. We are now on the path to the guys moving on with their lives. We will be getting them a home of their own and letting go. This is hard for me because I have to let go, not because of the fears I had about his future when he was first born. I feel so blessed to have him in my life.

  7. Lisa Shaull

    Great article! We have adopted a daughter with DS she was 2 when we got her. She is nearly 12 now. She has changed our lives in so many ways. She loves life so much. We can all learn from her. We named her Jasmin Angel because she was like a precious Angel when she came to us. So many people need to get to know kids with DS they will change your life.

  8. You have beautifully encapsulated the pressures surrounding antenatal testing and Down Syndrome – and brought so much flooding back.
    What’s to be scared of? Well, you might have a bit kore fun with your child than you originally thought…!
    Thank you for sharing.

  9. Karla

    Thank you for sharing. You said it exactly right, there is a bridge broken. When I was pregnant with my daughter 24 years ago, I remember being asked if I wanted “the test.” I said “no, it wouldn’t change anything anyway,” and that was the end of it, I was never asked again. So, yes, we were surprised when Meghan was born with Ds but more because she was a girl (the first one in our extended family after a string of five boys). She now goes to a day training program and lives in an apartment with a roommate (and some support staff time). When recapping her day, she often says, “this was the best day ever!” and she means it.

  10. Terry

    Lauren,

    What you wrote about – how few of us have ever been exposed to a family thriving with a child with DS, and how that lack of knowledge drives every part of testing and diagnosis – is so very true.

    We had a prenatal diagnosis with our twins, identical girls with DS, during a course of twin and heart issues 2 years ago. Our lives are so much more, in every way, and we could not imagine a different life. At the time, we could not imagine what our lives would be like and how this could impact our family, and the feedback we received was negative. I am so grateful for the presence of the internet, of Down syndrome pregnancy, of social media for letting us think of the possibility of how good our life could be.
    Terry

  11. Sarah

    This article is deeply problematic. Have you talked to women who have terminated due to a positive prenatal DS diagnosis?

    I did and I was not “afraid” of DS nor was there was gap between my information and my choice. Our daughter had t21, severe brains and heart issues. DS not a silly extra little chromosome like hair color. It changed her heart structure, her brain structure. She would never be independent and I have family with DS and i have seen firsthand the mental and medical struggles. I have watched the decline due to Alzheimer’s that affects DS individuals. And the wearying care that seems oddly absent from blogs. Although one has to question why so many DS blogs are about children and not adults.

    Prenatal testing gives nothing more than options. It is not fear that is causing women to terminate. It accepting the situation and making the best choice for a family. That you chose differently is simply one story and it has very little to do with another woman’s life story.

    • Dear Sarah,
      I am the [adoptive] mother of Nathan with Ds, who is now 31. My ex-husband is related to the birth mom. Thirty one years ago a close family member heard 2 doctors in the hallway outside birth mom’s room; one said who will tell and who will mop up?
      Nathan has come much farther than I could have imagined. He has been held back by individuals with prejudices, or who won’t allow themselves to see his worth. And he has advanced by my pushing and prodding. Nate has a love of the Internet, despite being mostly a non-reader, he figured out YouTube, and how to watch his shows there. He is Uncle Nate to 2 nephews and proud of it.
      His independence was curtailed a bit due to my husband’s decision to leave our marriage/home. Yet it was Nathan who came in to my bedroom in the first month after the shock – to tell me; Calm down, Mom. This from a son who cannot articulate clearly. That sentence/sentiment came through loud & clear.
      Folks w/Downs show us to see how each human being has strengths and weaknesses, abilities and lack of some abilities. Nathan is an amazing needle point artist! He has sold his work! He wakes up loving each day, cooks his own meals, cleans his rooms, even occasionally tries to take care of me.
      Each woman who is a mother, potential mother, has her own story, as you put it. The glory and wonder is when a story touches our hearts or our experiences, or our desires- and helps us to see things in a new light.

    • Carey

      Sarah I am so sorry you feel this way. An in utero dx is just that, nothing more. There is no way they could predict your childs’ independence. No way. I have a friend who was told her son with Ds would be born w/ severe heart problems & a multitude of other health problems, but they continued with the pregnancy. Doctors gave them little hope that he would be born alive, but now he’s an active, smart and handsome 3 year old. And my daughter, now 8, reads alongside her peers, writes more legibly than her 10 year old brother & is the light of any room she enters. I am truly truly sorry for your loss. I couldn’t imagine life without my daughter.

    • Sarah

      I am so sorry you choose to end your child’s life with so much unknown. We too had prenatal DS with heart defects. Turns out the heart defects were only 2 little holes that closed by the time he was one. My 6 year old is the joy of my life – of course it’s extra work – but that extra work has an extra payoff.

    • I am so sorry for your loss. I have no experience of Down’s personally except that we declined pre natal testing on the basis that our much loved child was a gift from God and we would welcome whatever child He sent us. I do have experience of Alzheimers though as my father suffers. Its a terrible cruel disease that brings pain and suffering to everyone who loves the sufferer but it has brought our family closer than we would ever have been otherwise. I cannot but be sad that you would think a life valueless on the basis of either of these issues. We all have the potential to be victim of a life threatening disease like Alzheimers or cancer but that does not render life valueless. I treasure every day with my Father as does my Mum – they have been married 57 years and cannot bear the thought of parting

    • Megan

      Lauren-

      Clearly you do not have MUCH knowledge on DS. Blogs are obviously more about children because we are advocating for our little ones to show that even through the struggles whether their mental capabilities or physical struggles, we would never change a thing about them or our lives. There is much more research today, more knowledge and SO many options to help our children live wonderful lives. In the later years, there weren’t as many options. Not much was known about caring for someone with Down syndrome. It is a completely different world today. As a mother to a baby boy with a prenatal diagnosis I am proud to say that I kept my son regardless of the “statistics” against him. Most of us put our special needs children on pedestals because regardless of how rough it can be- our little ones have made us appreciate life with a different lens. A lens that sees life in a beautiful way where every child deserves a chance. We advocate our children to help recieve respect for ALL individuals with DS. Please educate yourself before making judgements, obviously you know way to little.

    • Melonie

      Sarah,
      I am very sorry for your loss, too. This has been very painful for you, I’m sure.
      However, there’s no need to be defensive about your choice by being negative about others and their choices, their outcomes and their attitudes about their outcomes. We are trying to educate.
      Some Ds children do suffer moderate to severe problems at birth, but even a “normal” baby has so much unknown about them, their health, their future and fate. We assume the best for a “normal” baby, but any of us can be faced with unexpected challenges that no pre-natal test can predict. We will all die eventually. Those of us who are lucky enough to live to old age will likely lose our independence to some extent and we might even eventually experience the very same health challenges that an individual with Down’s might have. None of this makes one life less valuable than another.
      Suffering is part of life.
      Joy is a much better part of life.
      From what I have seen, heard, read, and experienced, the people of this world with Downs seem to have a lot of joy in their life. Perhaps even more than the rest of us. They need us and we certainly need them. It is my belief that these relationships are an essential part of life and bring much meaning to life.

    • Doris

      I am the mother of six ranging from 52 to a 32 year old charmer who has Down syndrome and Autism. Like many mothers of kids with disabilities, I became a single & sole-support mother shortly after I gave birth to a baby with many medical problems. The first 7 years were a hell I struggled through with God as my my only support. Today he is the sunshine in my life but, like Sarah, I too am uncomfortable with the way all people who have Downs are portrayed as sweet, affectionate, capable, etc… because just because my son does happen to be a sweet & affectionate person does not mean that I don’t know some people who have Downs who certainly are nasty, spoiled, aggressive, behaviour problems. Like everyone else on earth .. people with Downs are INDIVIDUALS with differences.. and I get tired of articles that paint them like pets that every family should get! Maybe you don’t see blogs from parents of adults because we are busy confronting new challenges that the blogging parents of the little ones haven’t yet met. My son has areas of strengths (like reading, acting, playing piano, travelling public transit) but he is also like a 6 year old, has speech & communication problems and will never live independently. I expect the Alzheimer’s that is so prevalent in DS and, like all aging parents, worry about where and how my child will live when I die. I know some adults who have DS who have never walked or talked and sit in diapers and helmets, seemingly unaware of anything, so I consider myself blessed. Prenatal testing gives a woman options and I will always defend a mother’s right to make the best choice for her circumstances and her family. Thank you for stating your truth Sarah <3 {{{hugs}}}

  12. Renee

    Wow, I’m not sure if you were trying to make me cry but you did. Today is my Lauren’s 15th birthday. She has two other sisters 9 & 6. She is amazing and 15 years ago I received a lot of the bad information and sadness. My OB was not one of them. He even went so far as to have us meet a young man he delivered 16 years before.
    I wish someone would have told me all the good things. She has changed me in all the good ways. I’m a better mother and she has blessed me beyond what I deserve.

    Thank you for writing this. Very well said. Kate is simply beautiful.

  13. Renee

    Also my daughter had heart problems at birth and had surgery. The brain problems you speak of, well, she reads, plays piano, works an IPad and IPhone better than I do. We are going to One direction in August. Her favorite band.
    My uncle was born a perfect health baby. At 20 he became mentally ill and is now
    Confined to a wheel chair because his leg was amputated.

    We are never promised perfection.

  14. dave

    Thanks you so much for this…you made me cry! My son is 5 and has downes. I couldn’t imagine what my world would be like if I didn’t wake up beside him each day!

  15. I´m a mother from Germany an my Little Jolina (4) has Downn Syndrome, too.
    An I have a Blog, too, to show the world You don´t have to be afraid
    Martina

  16. Bev Veitch

    Lauren, beautiful story about your Kate. Renee, I can really relate to you, my Katie is 15 yrs old. We were lucky that she didn’t have heart issues, and I have no idea of ‘brain issues’ that Sarah speaks of. Our Katie has the biggest smile and she’s a special olympic swimmer and rhythmic gymnist. She reads, loves music, dancing and will be going to the One Direction concert in August too (Christmas present). She adores school, her sister and her dogs……she adds so much sunshine to our lives, I couldn’t imagine life without her.

    • Renee

      Bev,
      I am not sure what brain problems exist. Yes, she will never be a rocket scientist but look at those people out there with Down Syndrome owning businesses, attending college, getting married and more. I have no limitations on Lauren. She will be what she is meant to be. I am just so darn happy that I didn’t listen to the nurse that said to me “how dare you keep a child with Down Syndrome”…I almost kicked her out of my house literally.
      Our doctor was different. He told me of all the great things that could become of our little girl. Actually all of her doctors love her! It’s scary but what isn’t in life.
      As for dementia and Alzheimer’s; Again any of us can come up with this. My husband has a TBI from combat and he is now at a greater risk.

      Seriously all I can think about is what people miss out on that chose to live in fear and make choices based on bad medical advice and opinions of others.

      There are fewer adult blogs about Down Syndrome because many of them have older parents and they don’t blog. I have a blog and Lauren’s 15. I will be around as long as I can shouting from the rooftops that she is simply perfect.

      Oh and here’s some GREAT news! Today we had the yearly cardiac check up. Next visit 1.5 years!! She had open heart surgery at 4 months old. I was told it was one of the worst kinds to have yet here she is, healthy and happy. Praise God!!

      • I had a prenatal diagnosis when I was pregnant with my youngest, Karrie, now 17. I used the 2 months I had this information to prepare myself and educate myself.
        Karrie just signed a modeling contract. She is on the honor roll, taking classes at our local high school. Does she need some help? Of course. Is she independent? She does laundry, cooks simple meals, and helps with cleaning the house. She passed classroom part of Driver’s Ed with an A. She volunteers at the local YMCA, helping small kids. She even won a partial college scholarship since she has volunteered so much!
        But more than anything, Karrie is my daughter. She is perfect to me! I simply can’t imagine my life without her smile! You can see a picture of her on her facebook page, Karrie Brown, Modeling the Future. Not trying to plug her here, but simply pointing out we should never assume the capabilities of anyone!!!

    • Renee

      PS…you aren’t going to One Direction in Houston are you? Tell Katie to watch out because Lauren LOVES Harry..haha

  17. Bev Veitch

    Forgot to add…..I’m the technically challenged one, not Katie, she’s always on the computer (You tube mostly watching videos), plays wii games (and often beats us) and loves her ipod. She wants a cell phone, but we haven’t given into that one yet.

  18. Hi there, Great article, brilliantly written. I am a little further along this wonderful journey – my son is 17. You may possibly have come across his FB page at http://www.facebook.com/OliverHellowellPhotographer My son had lots of issues and extremely poor ‘predictions’ in his early years but fortunately he had a mum who just kept thinking “yeah right well we’ll see about THAT!” Despite his “particularly and extremely poor muscle tone” and his “additional verbal dyspraxia on top of the speech and language difficulties he has because of his Down Syndrome” – my son is a skateboarder! And dreams of being a professional wildlife and landscape photographer – and has been interviewed on the radio on several times – and perfectly understood. He has brought me the kind of joy some other parents can only try and imagine. His life is not without challenge but I have a daughter 8yrs older than him and I can assure you a perfectly ‘ordinary’ teenage daughter brings with her enormous challenges too!! I set up and founded an organisation which now employs 12 people and supports over 500 families across a large region of the UK and am fortunate enough to have known hundreds of children with DS – and all the joy, variety and fun that has entailed! How lucky am I! It’s all about value isn’t it. Why are our children not seen just as valuable as an ordinary child? I gave a friend who has a son the same age as Oliver and who doesn’t have DS. He has dropped out if college, lost his part time job, got in with wrong crowd, been violent towards his mother and she’s pretty sure he’s on drugs. She’s worried to death about him. My son brings joy and pride to my every day, and leaves the lady at the supermarket checkout smiling at his chat and antics whenever we see her. When these two babies were born, it is the other child which would have been seen as the more valuable and more promising and worthy of joy, whilst mine was viewed as a disappointment, a burden, and a great sadness. WHY?! It’s just not right is it! But you and I my dear, we are lucky. We are almost ‘superior’ (!) to all those people out there who just don’t know – they don’t know the secret! The fact that actually our children and young people bring us a deep unconditional happiness which I find myself unable to describe – I think you probably have to have felt it to know. And we know you and I… Don’t we!! :) Lots of love! I shall be sharing your article on our organisations facebook page at http://www.facebook.com/UpsandDownsSouthwest Best wishes to you and your family from me and mine, Wendy xx

  19. LaWana

    We found out at birth our son has Down syndrome. It was all very overwhelming. The fear for his health, his heart, his breathing, the blood platelette count being low, not eating on his own. Then all the information being thrown at us all at once ( like we were expected to remember all of it ). Threw all of that it only took one little thought to help us put aside our fears and uncertainties. This is our son, not a diagnoses. We will being celebrating his 5th birthday next month. And we could not be more proud of him and the progress he has made to this point.

  20. What a beautiful article, it almost brought tears to my eyes (the pregnancy hormones are in full gear!) I am 15 weeks pregnant and decided to fore go any down syndrome testing because me and my husband don’t care either way, finding out early if our child had down syndrome would make no difference to us. I think before working with children with disabilities my stance would have been a little different. But if you’ve never been around it, you just don’t know, that there is NOTHING to be afraid of. I started volunteering at a children’s hospital about a year ago, my friend started a dance program for children with all types of disabilities. It has been the most rewarding thing I’ve ever done. Those kids are happier and more full of life than most kids I’ve ever seen, it totally changed my outlook on life. Stories like this just renew my faith in knowing that I will absolutely love any baby that god gives me!

    Here is a link to our Christmas performance the kids put on, they’re just awesome!
    http://inside.akronchildrens.org/2013/12/18/dance-unlimited-presents-believe-in-the-magic-of-christmas-photo-gallery/

  21. Eileen Gillooly

    I will never forget the day our granddaughter was born. I knew the moment that I saw her that she was a Down’s baby. Of course we had no way right then to know how healthy she might be so it was a bit frightening but I made up my mind right then and there that no matter how short her life might be she’d darn sure know that she was loved. I parked myself in my daughter’s hospital room to help her since she’d had a C-Section. I rocked and cuddled sweet Victoria for hours on end. Then her pediatrician walked in and began to talk about her being a “Mongoloid”. I couldn’t believe that in the 90’s a physician could be so crass. I told him that it was OK because to us she was perfect. He turned and scowled at me and very harshly said ‘NO, she is NOT perfect, she will never be perfect”. Yes, my daughter changed doctors but to this day it still makes me angry. Victoria is a teenager now , full of life and love and she has been the joy of our lives. And yes, she IS perfect because she is who she is and as the saying goes “God don’t make no junk”.

  22. Kelli

    Lauren,
    All this is so true. My son Taylor is 18 yrs old now and he is a ray of sunshine!
    When I first went to the dr. they also asked if I would like to be tested, I replied no because it wouldn’t change my mind whether or not to keep my baby. A month later I found out I was having twins.. My 2nd set. This set was boys so thru my pregnancy I would imagine how close they would be, having each other to play with ect…
    I had the boys 2 1/2 months early. Both boys had a very hard time. Only Taylor was born with D.S. , also severe brain damage. The dr. Came in and told me I should give him up because he would never amount to NOTHING!
    I won’t repeat what I replied…
    Grant I was scared, but it wasn’t being scared of having a child with D.S… I was scared if I would be a good enough mother for him. Over the years he has taught me so much! My love for him is like no other… His smile brightens my life. Sure it’s been hard from time to time, but all kids are. Maybe he doesn’t learn on the same level as my other children but when he does learn something new it’s amazing. I am blessed and very proud he is my son.

  23. Molly

    Lauren,

    Beautifully written piece. I have 3 youngish adult children (early to mid 20’s) and then was blessed in 2012 with my Piper Bean. She also has T21 and is just about as perfect as they come. You are so correct about the disconnect between human genetics and the human spirit.

    I believe the majority of doctors don’t have a real understanding about the lives of those with T21. They have outdated, fear based information to share. I also believe they operate out of fear themselves. They do not want to be blamed for the diagnosis. I had a prenatal diagnosis, but not much information from my doctor. The NICU nurses were wonderful and several recommend the man who is now our pediatrician. He has a son with physical and mental disabilities. His picture wall is filled with children who happen to have T21, cerebral palsy, and other issues.

    Our daughter lights up our lives in ways no one else does. She is a celebration.

  24. Jaclyn

    I remember when I was pregnant with #3, my doctor told me that some markers for Down Syndrome had showed up on my routine ultrasound. She asked if I wanted an amnio to find out for sure. I said I didn’t want any tests that might be dangerous for my baby, but I consented to a level 2 ultrasound, to avoid that delivery-day surprise. I cried when I left that appointment, and that unsettled feeling lasted about 4 hours. Then it was suddenly and completely replaced by peace. I knew if my baby had Down Syndrome she might have health complications. I knew she might have a hard time with breastfeeding, and I wanted to research the best kind of pump to buy. But that was it – once that peace settled into my heart, those were my only “concerns”. When I found out that my little one didn’t have Down Syndrome after all, I admit to a twinge of sadness – if God is going to make these beautiful souls and send them into the world, why not send one to someone ready, willing, and WANTING to love them?

  25. Kate

    Thank you for sharing this! As a mom that has a 3week old baby girl that was just diagnosed with DS, I need to hear from parents a few years down the road. My greatest fears and sadness come from a future I can’t picture. I thank my Heavenly Father everyday that I didn’t take the Quad screen tests.

    • Renee

      Oh Kate you just wait! You can picture all kinds of things and I believe in 15 years things will be better for your little girl. So many ahead of me fought to change the way our beautiful children are treated. I wish I could share a picture of Lauren here for you at 3 weeks and today as she turned 15. She is a HOOT!
      I still have fears and questions but oh my goodness I have the best kids ever. Her sisters adore her and she is the life of every place she goes. People always stare at us because we are loud, proud and a happy family.

      Your daughter will do what you expect of her. I always said Lauren would read, run, ride a bike, walk, have friends, fall in love, play the piano, and make me crazy. She is a typical teenage girl and does ALL of those things.

      Congratulations on the birth of your BEAUTIFUL daughter!!

      Renee’

      • Susan Holcombe

        Kate, you are in store for lots of laughter and a depth of love that will make your friends jealous. :) Provide every experience you can for your child. Expose her to everything and let her try everything she wants to try. Be consistent because she will try you, she will be a manipulative stinker on occasion, but this will just show you how smart she is! Don’t believe anyone who tells you what they think she will not be able to do. And lastly, know that the more you let her do for herself the more independent she will become. You are a very lucky mommy!

    • Emma

      My Francesca has just turned three and I was told the day after she was born she had DS. I sobbed for an hour, because as many people have said, I had no exposure to Downs Syndrome and only knew of the stereotype and I was scared to death. But her paediatrician came and spoke to us and told us what we could possibly expect, and I walked away happier. Now she loves to sing and dance and she claps herself and others every time something makes her laugh or smile. She is a complete joy and blessing and I count myself as one of the lucky ones to have known such joy in my life.

  26. Dianne

    I was 35 when I got pregnant with our second child. This was 1986, amnio was still considered a somewhat new procedure but was recommended for women 35 & older. I told my doctor I didn’t want it. It was risky and wouldn’t make any difference because our baby was made with love and we would accept whatever God gave us. When we were growing up, special needs children weren’t accepted in schools, they were either put in institutions or kept at home with little or no training. I had never met a child with Down syndrome & neither had my husband. When he was born we were told we should probably put him in an institution because there were so many negatives to having a ‘retarded’ child. My obgyn wanted me to have my tubes tied right away because I shouldn’t have any more children who might possibly be defective. This was in the days before computers were readily available and the internet wasn’t there. The only information I could get was from old books in the library. We took our little boy home and loved him. He is now 27, works at Goodwill, does his own laundry, cleans his own room, does chores around the house, does some simple cooking, walks to the stores to buy Christmas presents by himself, has a wonderful sense of humor, loves to sing and dance, played on the regular basketball & football teams in middle school, bowls, swims, has rapelled up several cliffs, plays softball, basketball & bowling in Special Olympics, helped me take care of my husband who had Parkinson’s, and is a joy to everyone who meets him. He even inspired a friend to adopt a child with Down syndrome. Would my life be different if I had known ahead of time? Yes, I would have worried throughout the pregnancy but I still would have given birth to him. Now there is so much more information for prospective parents. Life expectancy for Down syndrome is longer because medical knowledge has improved. People now understand that an education is possible and needed for special needs children. People with special needs have so much they can contribute to the world. I’m very happy to be the mom of a Down syndrome man.

    • Leslie

      I had my twins also in 1986 and other than being twins, there were no “warning’ signs about any issues with my babies. I was 39 weeks and 5 days when I was blissfully relieved of carrying these chunky monkeys!!! lol I was only 26 and had a 3 yr old son. I had a miscarriage the year before the twins and I knew this would be my last pregnancy. I asked God for one thing, a girl. I got my girl but I also got the most amazing gift in my son, Rudy. He is my DS kiddo and an amazing human being. I also have a blog on WordPress and Rudy is most definitely one of my “subjects” but the thing is, I also have a life. I am so very blessed that Rudy (aka Rudman!!!) has been fairly healthy although we have had some close calls in his life but its a reality of his life. Its a reality of my life for that matter.

      Rudy has lived in a group home for most of his adult life because of my health. He comes regularly on the weekends but he always tells me when he’s ready to go “home”. lol He is a macdaddy dancer, can recite and act out every movie he’s ever seen, remembers locations of things and directions to places that really amazes me and he is an absolutely amazing artist.

      But I do have to agree with Sarah on one point… there are not a lot of blogs about adult DS persons. And I will freely admit it is not always flowers and butterflies… Rudy has had almost died a few times and contrary to popular belief, he ain’t always happy!!! That drives me nuts when people will say “Oh they are always so sweet, loving and happy..” no they are not! They are human beings just like everyone else and have tempers, moods, bad days and dislikes. But I would take every “bad” day Rudy has ever had for one of his hugs or his “I like you Mom”. (translation I love you Mom).

      I am now and have always been a huge advocate and willingly talk to anyone who has questions or concerns. Rudy’s twin sister just recently gave birth to twins, also at the age of 26. There was a “marker” on one of them for DS but she didn’t care. This has been part of her entire life and she wasn’t worried for one moment. Both girls are fine but would have been perfect either way. And I might add, Rudy is everyone of my 9 grandkids favorite “Uncle Rudy”.

      I also had an ignorant doctor tell me to institutionalize Rudy. I didn’t carry this kid for 9 months to throw him away. Please don’t take that the wrong way. Everyone makes their own choices and I do not judge EVER… this was my choice. I just could not let this beautiful baby boy who looked so much like his older brother, leave my side for a moment. There has not been one day in 27 years that I have regretted my decision.

      Peace and love to you all. If you ever want an honest and open discussion, I am always here. :)

      • Judi

        Leslie!!! Where have you been? Do you remember meeting me and my twins in Dallas??? You have been on my mind lately. I’m so glad I saw this blogpost!!!

  27. Babs

    What a lovely daughter! I feel exactly the same. My third child has down syndrome and we also didn’t run any tests when I was pregnant of our fourth child. If more people knew what down syndrome was about, these tests wouldn’t be necessary. And sometimes it is a challenge to bring up a child with down syndrome, but I enjoy every single minute of it.

  28. Cliff

    It’s true you are given a very one sided negative approach without any of the good stuff that you live through with all kids. I have 3 kids one with T21 but don’t expect any of them not to have fun and achieve.

  29. Sherri Walton

    Wow, it was like reading what I thought/felt when I found out my daughter had Down syndrome. It was the fear of all the unknowns, PLUS I/we had never been exposed to people with Down syndrome or families with children with Down syndrome.

    Quite frankly, I had only met one person with it and this was back in the early 80’s and it was a distant relative of someone in our family, and this woman was born in the 50’s and that was way before anyone really tried to educate or teach people with Down syndrome. So, this woman was what I had thought, at the time, to be a “typical” or better yet, stereotypical person with Down syndrome. Have that memory in the back of my head scared me to death.

    Let alone if you do research it on the internet, look out, it’s all statistics and the health horror stories. Very few and far between cute, shopping cart flirting and back seat singing and dancing. I wish there had been more of those when I was looking for information and maybe my first few weeks wouldn’t have been as scary and lonesome. The guilt I had inside about my own fear, or ignorance more likely, ate away at me.

    Now, my daughter is like most of your typical kids. She plays, sometimes a little rougher, with our older kids and tries to play and mother her two younger nephews. She’s outgoing, friendly, flirty when she wants to be, but she’ll put you in a headlock like the best of the WWE superstars if she deems it necessary…ha-ha.

    So, thank you for your post. It sums up a lot of how I felt and it would have been nice to have had something like that to read and validate my own feelings.

  30. Craig

    Great testimonial. It reminds me of many years ago when a close friend of mine was pregnant later in life. She told me that her and her husband had fears of the child possibly being affected with Downs. Being a teacher in a program with some Downs students and a Special Olympics coach, I told her she needed to visit my room…see how full of life my students were, see their accomplishments and to see them in action as teenagers…to learn that they had a LIFE! After our talk, she and her husband decided that they were not going to test and they were going to welcome their child. They had the baby, who is now an active teenager. Downs or not? It doesn’t matter.

  31. I really loved this post, Lauren. Thank you for sharing your story and your beautiful Kate with us. Despite the initial fear, I too feel like I won the lottery x

  32. Cynthia

    Our son is now nearly 23. He is and has been so accepted that when his nephew (who is actually a year older) married, he forgot to mention to his new wife that “Uncle Pat” has Down syndrome! She adjusted very well!
    As for the scare stories, when my daughter was pregnant with her second child, a nurse told her because her brother has Down syndrome, her child would be more likely to have it, too. Talk about ignorance in someone who should have known better!

  33. Robert

    Recognizing that people fear it because they don’t see it is why I was excited to learn about Best Buddies. It’s goal is to get people in contact with kids with Downs or other developmental disabilities. Then they recognize just who is spoken of when talking about those with Downs Syndrome.

  34. Gabrielle

    Lauren, I really enjoyed your post. I too felt many of the same emotions that you talk about when I got the diagnosis for my daughter Emmie, who is now 4 years old. She has brought joy in my life like no one else could ever do. It really warms my heart to see all these positive posts that were written.

    Kate, Congratulations! I still worry about the future sometimes….. but who doesn’t worry about their kids? No one knows what the future holds for anyone, but I do know that God blessed you the day your daughter was born. Do not set any limits, and she will amaze you :)

  35. Yes, and thank you for this well-written essay. I’m so glad to have read this. As a society, we are moving from hiding people with DS in institutions (common in my childhood) to everyone knowing someone with, related to or friends with someone with DS. We are in the midst of a DS civil rights movement.

  36. My son does not have Down Syndrome (he has multiple birth defects and disabilities)…but I feel like this blog could apply to a child with almost any “condition” that is detected (or not) before birth…thank you for writing it!

  37. Melissa

    Could not be any more blessed with being Adalines mommy she is a 15 mth old with DS. She is Baby A in a set of twins her sister is normal. Adaline had a rough start she had a good deal of complications & 4 heart defects, but is doing great now!! Everything she does is a milestone & I enjoy her so much. With the health issues are you telling me if you was to have a complication you would just want to terminate yourself?? Even normal ppl have problems sometimes. I think DS child/Adults teach us something!! We all need to learn how to enjoy life just a little more!! It’s a true blessing to have/or know someone with DS..

  38. Susan Holcombe

    As the mother of a handsome, witty, athletic, intuitive, responsible, and compassionate 20 year old son with Down syndrome, I am also truly blessed. I can honestly say the moment I was told my 1 hour-old baby had DS, I thanked God for choosing me to love and nurture this child. I vowed to give him the best life possible. The result? I have been loved and nurtured! He has become a very nice young man and now he is heading to college! The possibilities are now endless!

  39. I DID have an amniocentesis when I got pregnant with Patrick…because I wanted to be able to say to my petrified family, No, it doesn’t have DS, relax…or Yes, it does have DS…so we know we can handle it…relax. This was AFTER knowing Ruby had tetralogy of fallot heart defect which she had surgically repaired at 3 AFTER being successfully treated for Acute Myeloid Leukemia which she developed at 18 months old. WE had this…but our family would have been tortured with worry during my whole pregnancy. I avoided them for the 5 months it took to get my amnio… just to put them at rest. And WOOHOO…it didn’t have DS…and it was a boy. Much rejoicing! But he DID have a developmental delay of unknown origin, which we didn’t discover til he was 3. Life is a crap shoot. Roll with it baby!
    Thank you for this very well written article!

  40. Charlotte Taylor

    Just wanted to say thank you for sharing your story. Afraid is the word that people use so often, and I know that comes from lack of knowing. Twenty years ago, we had the pleasure of having a wonderful little boy named Brett be a fellow student in my sons kindergarten class. It was the first year the school had inclusion, allowing Brett, a child with DS to study with his aged peers. I watched as the rest of the children learned to help him, include him and to be protective of him, all on their own. One day his mother and I were volunteering in class and I told her how much we loved having Brett in class and how appreciative I was of the gift that he had given the rest of the children, a real life understanding of unconditional acceptance and caring. She started to cry and I felt horrible thinking I’d hurt her feelings in some way, and as I tried to apologize, she assured it was the opposite. She said it was the first time anyone had told her that they were appreciative and happy to have her son and how hard she’d had to fight to have him included! I will never forget that moment, and I know that my son is a more caring and understanding man now because of Brett. I understand when you say, what was I afraid of…because knowing allows you to accept the beautiful gift that a child such as your Kate or Brett really is! I wish your family many happy, healthy and loving years to come!

  41. Ashlee

    My sweet little girl was born one month ago today and while my husband suspected from the moment he saw her, it was confirmed within the hour that the pediatrician on call felt she showed signs of having DS. Thankfully through our whole process each physician and nurse we have had have shown us nothing but kindness and compassion in their communication with us. Our own pediatrician even got emotional the first time she spoke with us and met our Brighton. I am so thankful that our journey has begun on such a hopeful and encouraging note, especially in light of so many who were not show the same consideration!

  42. leah dolmage

    This is so important to speak about, thank you. Luckily for me and everyone who knows me, I was born into a family with my older Matthew brother, who was amazing and funny and a brilliant musician with perfect pitch who was vehemently stubborn and never felt the need to apologize for himself and his talents and his unique way of being, moving and communicating in the world. I learned to crawl in his mirror image, pulling myself on my left elbow. When my grandmother asked me when i was young about getting married and having kids (i hadn’t really thought of it, i imagined i would live with friends and family in connected apartments with a courtyard and our own swingset and swimming pool and forest and a lots of rescued animals) – my answer to her, maybe i will have 3 kids, one boy* one girl* and one baby with a disability. This said to the waspy narcissistic grandmother who I didn’t know it at the time, had abandoned her own newborn, born apparently with down syndrome, Uncle Robert, to a short and tortured life denied of all joy and pleasant sensation and the love of his siblings and community, which ultimately ended at the tender age of 8 due to untreated pnemonia in a state run institution called a “hospital school” in Orillia Ontario, the first one built in this province, and focus of a recently settled class action lawsuit. I haven’t grown up to be straight nor particularly interested in marriage. I have those friends as family around me and feel truly blessed. I am almost 38 now and don’t have kids of my own – lots of precious little people in my life though. I am open to a variety of possibilities, and following Matthew’s lead I really don’t think I’ll have regrets if my choices and priorities and opportunities lead me down a different path – but when people ask me “why don’t you have kids?’ me and my beautiful fierce femmegimp feminist pornstar academic friend (people don’t seem to ask her “the question” as much though – something about assuming disabled people aren’t going to or shouldn’t be parents…) have a great response we have come up with – we say, “well, that’d be cool yeah, but I figure the longer I wait, the better chance I have of having a baby with down syndrome *big smile*!” I can’t and dont want to even imagine who I would be or my life without Matthew, even though he died almost 10 years ago, at the age of 29, with a smile on his face and countless hopes and dreams both fulfilled and those in waiting, he lived a full life and he lived life to the fullest – due to his own inner strength and my parents dedication to tirelessly advocating for him so that he could learn to read and type and sign and go to school with us and graduate and have direct funding so he could continue to work and volunteer and work out at the y and meet people and make us laugh and be the best company you could ever ask for, and did i mention the music? So what if he yelled in movies – we were together. If you knew how to love him you learned how to defend him against an often hostile or unwelcoming staring public. That strength and dedication lead to the difference between there being close to 300 or so people at his funeral, compared to what it might have been, and compared to Robert’s especially. So this is for all our loved ones, those who came before us and those who are yet to come.
    *gender is not just limited to only 2 options nor always apparent at birth or in accordance with physiology, and i believe it is important for parents to listen to their kids and who they say they are and be open to privde the widest range of possible choices for who they want to be and whatever they are interested in to support them to pursue it, ultimately to do what will make them and the people they care about happiest. Life is not easy, but it sure can be different! And difference, people, is what makes us human. Let’s start cleaning up this mess we have made of things.

  43. Andrea

    So beautiful to read your story. My heart soars hearing the beautiful love….. Kids born with DS are a beautiful gift and a love that just warms my heart and makes me smile…..may your story continue to support others, give them comfort of the unknown. Thank you for sharing!

  44. Sara

    Hi your story has been so beautifully written and the few words that have stuck in my head are it feels like you have won the lottery.that is exactly how I feel about my 2 year old son Jorge.his special extra chromosome was a surprise but the best one ever.he was born with TAM so anti of a worrying time at first aswell as a hole in his heart.his big sister was born with only half a working heart and has had 3 open heart ops already so I truly believe Jorge was sent to us for a reason.
    I describe him as having our own sunshine in the house everyday.he has changed all my families lives for the better :-)))

  45. Susan

    Thanks for your wonderful glimpse of life with your sweet girl!

    I’m 52, when I was growing up, every church my family belonged to had at least one youngster with down syndrome in it.(one of whom is now about 50 and worthy of his own wonderful stories blog…) Even though it was the “old days” and there wasn’t all the helps/supports available for their parents, it was good to know them. I also grew up knowing folk who were told to institutionalize other special needs kids at birth, and did.

    At 41 I met and married a widower with a son who had Tri21. Sometimes I get frustrated with the natural inclination in the DS community to want to brag on how high their kids have achieved, as if this is what makes them them and what gives them worth. We are not worth more because of our degrees or good looks or accomplishments, they are simply part of who we are, or a reflection of our interests. And like the other mom above who mentioned this, “they” are not all smiled and giggles. “They” are real people, with good and bad qualities.

    We don’t not end our other pregnancies for fear the person we birth might not go to college or might not marry, or may live at home longer. Why would that be a reason to end one with DS? That said, I know why most of us focus on the positive (as we do with ALL our children) and in part that is because people do need to know all that is good and normal and fun and delightful and possible!

    I came into my step son’s life when he was 16, he turns 27 this week. I can’t tell you the folk who have said things “your husband sure has his hands full with that one.” while I do a double take wondering what in the world she is talking about? looking over at son happily working the room. I’ve had the occasional person suggest I was some kind of “hero” to take this on. I tell them I’m blessed our Son took ME on and let me be his “Mama Lucy”

    Our son isn’t advanced, he’s on the lower end of the DS spectrum. Testable IQ of about 47. He had heart surgury as a baby and did fine, so he did come with a “broken heart.” He has no lingering effects from it.

    His lower verbal functioning and inability to read? Some of it may be the result of a rural upbringing without much by way of programs available. He doesn’t know he can’t read. In fact, he takes his bible (dad’s a pastor) and sits on his bed an hour at a time flipping pages. If we tell him it’s time to do something else, he love to look up and scold us “shh…reading bible.” with a wave for us to close the door….He’s had some jobs and was well received by those he worked with.

    I do think had he been born today, he might have gone a little further, he might have benefited from signing as he is not very verbal. You know why it saddens me that he didn’t get that? Because I/WE miss out on knowing him via communication and he misses the joy of it. That’s all! Not because it changes his worth.

    Even at the lower end…He bathes and takes care of ALL of his grooming needs himself, he does his own laundry, he keeps a better room (a bit OCD so) than any teen or young adult male I know, who am I kidding he keeps his room better than I do mine! He has decent table manners. Sure he has also sung a song about how much he lOVES his napkin when I replaced cheaper one’s with nicer chinet one’s….”I looooovveee my napkin” he sang, holding it to his cheek” The guy knows quality! Just today when I put on a new nightgown ( I keep the old one’s over long, they are softer) He gave me a big thumbs up and said “nice dress”….man have I let myself go or what?

    He’s very visual and intuitive, he knows if someone needs a hug, or a kind word. He knows that he isn’t to hug everyone (not everyone appreciates such) and knows to shake hands or fist bump or wave. He can dance like a pro, he makes up songs on his guitar, he is a proud uncle, he’s great with babies, who else will sit on the floor with a 2 year old happily holding their plastic farm animals for them?

    He’d love to get married but until I can find a mama and dad who want to do an alternating year “letting the young couple live with them” deal, I think it’s gonna be always a best man and never a groom for him. This is a lower functioning young man…”THIS” is what and who “they” are afraid of. He lights up a room, he makes us laugh and laugh with his sense of humor. When he left his last school other program participants wept at their loss. We live in a big city and out and about we meet other’s because of him, he connects with others easily! We have Noah stories by the mile. He has 3 older siblings, I got the best one living in my house! And he’s made them all better people because of his role in their lives. The world is and will be so much poorer for the death of 95 percent of those with down syndrome in the womb. We the “perfect” (HA-NOT) need the “imperfect” (imperfectly wonderful) among us.

    Yes, he also perks his ears up when he hears the word “retarded” even if it’s just used clinically. He knows what it is to be laughed at, to feel left out and hardest of all, I believe he has a sense that his younger sibs have passed him by in intellect and lifestyle. But he moves on, he doesn’t obsess. He has a job and a life…and that is to be himself!

    Okay, so maybe like the prior poster, they aren’t afraid, they just believe they aren’t up for whatever comes with DS 21. Well I am told by those in the know, that there are many families who will gladly adopt children with DS. So I cannot imagine why abortion would be the answer.

    Keep enjoying your girl, and as she ages let her decide if she wants to be a superstar for the “cause of DS” or if she already IS one, for being her!

    Susan

  46. My daughter has a learning disability and in order to have her socialise more we signed her up for a 10-pin bowling team catering to (and I hate this word) bowlers with disabilities.

    I’ve become secretary of the club and absolutely LOVE Saturday mornings at the alley, high-fiving the spares and strikes, cheering the turkeys (that’s three strikes in a row, not a derogatory term) and enjoying the fun. Probably a dozen of the bowlers have DS. And honestly, they are the kindest, most honest people I know. I’m proud to call them my friends, and love sharing their successes.

    You wrote a great piece. I think I’ll share it with my friends…

  47. Nadia Rabaioli

    thanks for sharing this wonderful report, I have my second son with ds, he is the greatest gift we got in our life…prejudices have to be fought, about ds…greetings from Italy

  48. Joyce

    I grew up with a cousin with DS. He was born in the late 40’s before there were any “opporttunities ” for such children. Most were institutionalized. He was an only child but lived at home as long as his father was alive and his mother able to care for him. A nearby teacher taught him a lot that he would not have gotten otherwise. He was an absolute artist with an Etch a Sketch. After his parents were gone he lived in a group home where he was a great favorite with the women who lived there! He lived to be in his 60’s and had a wonderful life. Unfortunately, due to his exuberantly loving nature my mother was a bit afraid for her two little girls and some of that fear was passed on to me. Thankfully I understood that it was due to the lack of information at the time, 50s and 60s , and have come to understand DS people for what they are – warm and loving. It would not be the end of the world by any means if one of my grandchildren were to be born with DS. We already have grandchildren with CHD, ASD, ADD, ODD, etc. It seems that today everyone has a label! We love then all.

  49. Matt Ricketts

    Great story!

    A family member recently delivered a down syndrome daughter, and this puts a lot into perspective.

    Matt

  50. Liz

    I Loved this!! Thank you soo much for saying all of these things! My son Max is only 10 months old and he has already made me laugh and smile soo many more times than I have cried about the shock of being told my son would have Down Syndrome. I am a Nurse Practitioner and prior to that was a Pediatric Nurse where I took care of children with Down Syndrome..yet when I heard the diagnosis last year I was still scared…I blame the doctors and nurses I encountered who were soo quick to give me excuses I could tell my family/friends as to why I had terminated my pregnancy..BUT..I had not even made my decision yet!! I was soo angry with the entire system and disappointed since I too am a member of that field! My husband an I quickly met up with our local school ACDS and they really helped to alleviate any of our fears and we are soooo happy with the decision we made to keep our precious angel!!

  51. KiKi

    I was fortunate enough to grow up with my Aunt Valerie who had Down Syndrome. She was the youngest of 12 children who grew up in the Steel Town of Braddock, Pennsylvania. She was vehemently protected by her older brothers and sisters at a time when someone who had Down Syndrome was not usually accepted all that easily. She had a wonderful life and brought so much joy, fun and happiness to all of our lives. She was stubborn, sweet, precocious, funny and very strong-willed. Some would say our grandma spoiled her “just a smidge.” But what me, my siblings and my cousins learned from having such a great person and soul in our lives was that she was just Aunt Val .. Not Aunt Val with Down Syndrome. And I do think that we all took that into our adulthood and I have always thought that was one of the greatest lessons we could have been taught. And I know for certain that is what I have taught my girls.
    This past year my 6 yr old entered Kindergarten and she spoke numerous times about Jessica. About what they play, and how they love puppies and how nice she was and she likes to draw just like her. We received her class picture and she pointed out Jess. Jess has Down Syndrome. She told me “That’s my friend Jessica – she is in some of my classes, but sometimes she goes in another room .. Don’t you love her pink glasses, Mommy?” And that was it. Her friend Jessica.

    • Alison Garner

      How wonderful that you have taught your children well. I know that having a son with Down syndrome has enriched my immediate and extended family. He has been a source of joy to those he associates with, and he gives other people an opportunity to serve and to be kind. What a blessing!

  52. sofija

    Thank you for sharing your story. I just had a baby #4 (9weeks) and she was diagnosed with the ds. My first test came 1 in 46, I refused amnyo, the following tests were negative. But here we are. And she was born. I wouldn’t have changed a thing. I think it is all labels that we put. I haven’t told many people yet but when they don’t know they take her as she is perfect. She is perfect. What I am saying is that people put lables from knowing/unknowing and start framing to that. I know our life will be full of challenges but I have them too with my other kids. Thanks. Sophia

  53. Jen

    My daugher with DS is 6. She is adored by our family and friends, most of whom don’t have any other experience with a person with DS. And you know what, she’s just one of the family. We love her and the color that she brings to our big, messy, beautiful picture.

  54. Steve Campbell

    Great story, Lauren. I don’t have a Down’s Syndrom child, and I don’t have children. But I love children, and I always wanted one. I have a soft heart for children, but especially DS children, anyone with DS, or any other condition that attracts uncomfortable stares. I notice that DS children are always smiling, and I love to smile back and engage them. They truly must be a gift to have in your life. Thank you for shedding more light on and making me more aware. Your daughter is a cutie.

  55. Amanda Bary

    I absolutely LOVE this article. How often does our fear of unknown ruin the potential of all that path has to offer :)

  56. Fear robs so many of so much. Mostly of opportunity and the exhilaration of overcoming our own fears and discovering more about ourselves. The world is a much better place with people who have Down syndrome. It is a sadness that so many rob themselves of the opportunity. Great article.

  57. beryl hawk

    A very good friend of mine has a sister who has Downs Syndrome once told me every child brings happiness to this world but Joan (her sister) has brought so much more, love and happiness. She is a blessing. So, so true

  58. I “happened” upon your site, and this beautiful post. My fathers youngest sister had Down’s and she was the the family favourite! Nine boys and 2 other girls ahead of her, Betty was the sweetest of them all. I learned from early on what absolute love looks like. Wishing you many continued blessings.

  59. Janice

    Your article is about Down Syndrome, but could relate to any “unknown” of birth. People are afraid when a condition, disease, or “abnormality” exists. As if we know what each life will turn out like. Sometimes these conditions are not even known at birth; they can be invisible, like a heart condition or hearing loss. Those delivering the news may not have had the experience of saying that a newborn is not the “perfect 10 fingers and 10 toes and health” that people hope for/dream of when they think of their new baby. The doctor that delivered my child never came to see us. Yes, there are challenges to face, but is this and other medical diagnoses just a fear of the unknown? I sought and found a support group for military parents, and eventually became a visitor called by the nicu to offer encouragement and resources. That was almost 25 years ago, and no one could predict what my child has become or has brought to my life.

  60. helen edwards

    my aunt who is 53 this yr & has d.s has always been the shining star in our family her social skills outshine her academic skills although she can read ,write & remember things most of us can,t! , as my mums youngest sister & with there just being a yr between her & my eldest sister we have all been brought up together & we have shared some gr8 memories , 53 years ago the doctor told my 44 yr old grandmother & 53 yr old grandfather that she would never walk or talk & the future was very bleak & they could put her in a home if they couldn,t care 4 her, to which my lovely grandad replied “over my dead body!” if only those doctors could have seen into the future & saw the fun loving girl who loves the karaoke especially singing 2 elvis , standing up in front of a packed pub & signing to robbie williams “angels” which brought a tear 2 alot of peoples eyes, to all the new & existing parents/family of d.s children never say never & always look to the future with a positve attitude how ever hard your day is ( i know as a parent of a disabled child) life isn,t always the easy ride most people have but the love & affection we get is priceless xx

  61. Kim Stokes

    LOVE this post! LOVE your attitude and perspective! I’ve got a 9 yr. old son with DS and he’s the LOVE of my life!! He’s brought SO MANY lessons to our lives!

    I wanted to share with you a website that has made a HUGE difference in our world. Hop-future.org. It talks about the Neurodevelopmental Approach to learning. It has made my son’s life so very “typical.” He is in 3rd grade in a general ed classroom. We just got done working on his spelling words for tomorrow’s test: won, one, two, to, too, they’re, their, there, etc. He’s rocking them – and their definitions. Not to mention the sight words: probably, tried, order. This list is the list for ALL the kids in his general ed. 3rd grade class. We’ve been doing the ND program since he was 1. He was reading sight words late in his 2nd year. Of life — not school! He’s reading at or above grade level. This program is a LOT of work but it works wonders for our kids and other kids with learning differences! I would love for you to contact me if you have any questions…I love to talk about this stuff!! Keep on writing your heart…it will be so fun to look back on these days and see how much your sweet Kate has changed your life!! Thanks for sharing her with others!

    • Sarah Davis

      Kim,

      I would like the ability to contact you about hope-future.org. My son with Ds is also 9 and in 2nd grade. This method of teaching is new to me but I look forward to learning about it. Would you be willing to share your email address with me?

      Thank you!
      Sarah

  62. Deborah

    Very touching and profound. This should be shared to everyone! It took me straight back 18 years ago, and losing myself in grief and sadness for the first 24 hours…essentially rejecting my own son, until I slapped some sense into myself and started fighting for my boy! Heavens knows the hospital, nurses, doctors sure weren’t! What an overwhelming adventure these 18 years have been. Lots of scary times with multiple heart surgeries and all…but when I look at him, I wouldn’t trade a thing…if it meant having to give him up. Thank you God for showing us the meaning of true love!

  63. michelle best

    weIl have a 23 yr old child with downs and Im a nurse…but I needed someone to just tell me he will be okay…Fear described my initial reaction..but nobody reassured me..They knew I was a nurse but when its your child I needed just to have someone hold my hand, but they never did.. I was going through a bad divorce at the same time…but Ive GOD never leaves us..and he helped me through it all so I Feel very blessed to have my son who is my little angel

  64. Susan

    This story brought tears to my eyes…because of the beauty and because my husband and I no longer have a child with DS. We lost our precious Keira several months ago to a very severe case of Influenza B. she was born a fraternal twin with almost no health conditions and seemed to be thriving better than her “normal” twin sister. Our entire family feels such a deep loss without Keira. She was the most loving person I have ever known. Anybody who knew her thought they were her favorite person! I would give anything to have her back, and have said many times that I wouldn’t have cared if they both had had DS. (Even though fear was my strongest emotion when they were born) God bless you, your family, and your message!

  65. Amy

    I love what you have written here. Many of us don’t understand and you help educate us. Prenatal testing is very stressful on a pregnant woman. I remember being 36 when I was pregnant with my daughter. Because I was over 35, they tested me so much, I was terrified. The Doctors gave me 7 sonograms and led me to believe something was very wrong. The tech at my last sonogram finally spoke up. There is nothing wrong with your baby and I don’t know why you are here again. The Doctors scared me so much, it ruined the experience of being pregnant for me. I have a healthy daughter, who is now 7. Sometimes I think the medical profession is too involved and take things too far. I am happy for you and sounds like you enjoy your kids. Cheers!

  66. Jo Ann Simons

    Thank you for your resonating words. Almost 35 years later, I am not scared but I do worry. I worry when he doesn’t answer the phone at 11 PM (because he is watching TV at a friends) or when he and his friends are driving in someone’s car to a movie (and it’s raining) or when he is walking back from work in the dark (sometimes he gets approached by strangers or when he takes an iffy short cut (that I have asked him not to). Being scared is just a normal part of parenting and I have learned to let go and let him live the full and rich life that is his. Jon lives in his own home, without roommates or staff, with the supports in place that let him live fully and with risk and dignity

  67. Amanda Caplinger

    Thank you for this. It brought tears to my eyes. As you described everything I have felt, from the pushing of testing, to the devastation you feel from uncertainty. I will say that I wish more people knew the joys a child with DS brings into this world. We did not have any testing done because we knew we’d love our child regardless so it was a surprise to us when she was born. I would not change her for all the world. She has a heart of pure gold and could not imagine my life without her. I try to educate myself and others because my daughter is not a “tragedy” as the world in general seems to view it. I was told she wouldnt or couldnt do so many things. Im proud to say she has made liars of them all! She is truly a gift and my family and I were blessed by God!

  68. Caroline

    Lauren, Our 2nd child was born in October with DS. We didn’t know ahead of time. A friend sent me a link to this post. I am beginning this journey you describe and relate to your emotions. However, I would like to add that I interned in a genetics lab in college and know the science behind all these tests that are available. I don’t look down on someone who gets the tests. If knowing helps them manage, that’s what they need to do. You are correct, there is a missing piece. That missing piece is faith and trust in the Lord. Not that trusting Him makes all the emotions and asking “why” go away but it does make it easier to manage, knowing there is a purpose for this child’s life. Even if that purpose is merely to brighten a person’s day by flirting in the grocery store. Thank you for sharing.

  69. Mary

    Thank you for sharing. I have been thinking thoughts similar to yours lately, but have not been able to express them as well as you. God bless.

  70. Rachel

    Great article, thank you!
    I had no screening tests throughout my 2 pregnancies as we had no further decisions to make, we were having babies and that in itself is a massive miracle.
    All pregnancies are.
    I enjoyed both my pregnancies (my husband says I have a selective memory!) and I know if I knew about our son having Ds I would have worried myself sick.
    I agree with Carey’s statement in that no one can predict the quality or outcome of an individual’s life. Family, attitude and opportunities shape the individual.
    Our son is nearly 11 and loving life, he is learning really well at school (reading & writing) has ups & downs like any other child his age.
    One aspect worries me though, friendships.
    We have made decisions to help this situation along.
    Expectations of our son are high, like with our daughter. He does everything she does, sometimes with help, sometimes without.
    In the past I have enjoyed talking to people (students/hospital staff/child care centre staff) about my views on Ds and sharing my son’s life with them.
    Yes I felt very overwhelmed with my son on occasions, an emotion I cannot remember feeling as strongly with my daughter, but that’s ok, parenting gets like that. I have the most supportive husband and family who are there for my family.
    I have attended seminars on Ds which I have found SO informative, so now I am spreading the word about how VERY important it is for mainstream teaching staff to enrol in these courses.

  71. Michelle

    Our society still, sadly, carries the biases of more difficult times when differences that made life skills difficult were often a death sentence. Now that we have the resources, the knowledge, and the ability to help nearly everyone find a way to live a productive adult life, there is no reason for the bias.

  72. Karen Barry

    I love this blog. My sister-in-law is the eldest of a family of five children. Next sibling after her is Fiona, who has Down’s Syndrome. It’s just the way it is – no why’s or wherefore’s. Fiona has just celebrated her 50th birthday. She has eight nieces – it’s girls all the way here! – who all tumble around her life, as do her brother, sisters, aunts, uncles, and all her friends. Her parents are the rocks around whom everybody swirls. My sister-in-law and her two sisters politely refused Down’s screening when pregnant: there is nothing to be afraid of :)

  73. Wow. I LOVE this! Thank you so much for sharing what so many of us feel. Our oldest child is 27 years old and he has Down Syndrome. We had 3 other children after that. I can SO RELATE to the urgent way pre-natal testing was being presented to me during my last 3 pregnancies. I have a blog that my family urged me to start a couple of years ago…to share about our lives with our son, Joshua…and the rest of our family. I hope that it is encouraging…anyone is welcome to read it. :)

    Thank you, again, for writing this post. Your words blessed me today.

    http://martysmoosetracks.blogspot.com/2013/08/cinderella-complex.html

  74. Maria Woolston

    Kiki,

    I love your story! God bless you and your daughter. I work in a Life Skills Class, and your story made my day!

  75. Jess

    I’m in my second pregnancy, the first in the UK and the second here in NZ. We’ve declined testing both times, and although our reasons are different for not flinging out, my husband and I agree we wouldn’t terminate.

    Interestingly I had no pressure when we said no in the UK, but here (NZ) my midwife said it as very rare to say no, (some of my friends don’t even remember being asked, it was almost a given they would be tested.). The midwife then asked if she could put on the referral form for the scan, that I had declined for ‘spiritual’ reasons. I didn’t care what she wrote but it made me quite sad.

    Lovely post too!

  76. Angela

    Great blog! Thanks for sharing! I have 3 children and refused prenatal testing for all my pregnancies. That was an easy decision for me as I grew up with a sibling with DS. My brother, Matthew, will be 48 next month and is counting the days. Our Mother passed away 3 yrs ago so Matthew lives with me and my children. He loves watching my daughter play basketball and teasing my son about his girlfriends, and misses my other daughter who is living abroad. He loves God, America and group hugs! He does get ornery at times but usually due to his diabetes (insulin dependent) which he has had since age 9. He may not have the highest IQ yet at times he has more common sense than most. He has a trach which he will have for the rest of his life. (He had pneumonia that almost killed him twice and was trached and pegged both times. Scar tissue caused obstruction so trach acts as stent. He is not on O2.) We take him just about everywhere we go. Watching the love and care my parents gave to Matthew and fighting for him when he was hospitalized have helped me become his advocate. I remember one doctor tell me my brother was 44 in a 90 yr old body. I replied that he was a 44 yr old with a mind of a 5 yr old. He loves life! I remember doctors pressuring my Mom to fill out DNR for Matt. Her response was always “how is his heart?” They would respond fine. Before it was discovered that Matt had the obstruction an ENT specialist said that his vocal cords were paralyzed and would have to be cut. That was enough for me! Matthew now has the best doctors! I am so grateful that he still has vocal cords! He doesn’t fall asleep until he prays and asks God to bless everyone, loves to sing “This land is your land…”, and brings up memories that I have forgotten. I am blessed to have Matthew as my brother! I pray that more people refuse the screening test for DS. I hate to imagine a world without Down’s…

  77. Amanda L

    Your post provides wonderful enlightenment on the beauty of life with a child with Down Syndrome, and you are very effective in your aim of taking away the fear of a Down Syndrome diagnosis.

    However, I would urge you to consider that not fearing Down Syndrome should actually be an argument FOR genetic testing. Down Syndrome is the most common chromosomal issue those tests look for, both other, less common abnormalities are also caught by this testing. Chromosomal disorders such as Trisomy 18 and Trisomy 13 can be fatal disorders.

    Like many women, I chose not to test in my first three pregnancies because “it wouldn’t change anything” if my baby had Down Syndromem; “I would love the baby just the same,” is the common refrain. What I learned in the wake of my 20 week ultrasound was that my third child had Trisomy 18, and the degree to which he was affected was incompatible with life. Had I not feared the stigma of testing, and its supposed association with “fear of Down Syndrome,” I might have learned MONTHS earlier that the child I was carrying would never see life outside my womb. The loss of this baby nearly destroyed me, and it may have done so even if I had known at 10 or 12 weeks, but I believe the trauma would have been lessened had I not had 20 weeks to imagine a whole lifetime of loving my son.

    In my fourth pregnancy, I chose to do the Verify blood test, which tests the mother’s blood for evidence of Trisomies 21, 18 and 13, as well as sex-linked abnormalities. It can be performed as early as 10 weeks.

  78. Nancy

    I just received screening test results a couple of weeks ago that my child has >99% chance of DS. I am now 15 weeks pregnant, and while I am still on a bit of an emotional roller coaster, it is stories like yours that give me much hope for a wonderful future in raising this child. Thank you for taking the scariness away and giving me much to smile about. She is beautiful!

  79. Wonderful!! I had prenatal testing and received our diagnosis about mid-way through pregnancy. We prepared ourselves after we found out about soft markers. I was so glad I got the diagnosis early. We were able to prepare and even choose our delivery location based on our son’s special needs.

    I feel like the statistics of pregnancies diagnosed with Down syndrome are terminated because of the women that turn down the testing, knowing it won’t change anything. And I absolutely agree. Receiving news that anything is genetically… abnormal with your child is sobering news. But it does NOT need to be a death sentence or delivered with fear.

    Great article! My son with DS is 2½ years old now and an absolute joy!

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