Jul 072012

During my first ultrasound with Chase, the whole family surrounded me on the exam table. Craig held my sweaty hand and Bubba and Tisha stood at my head. The dark room was very, very quiet. The ultrasound technician, who had been bubbly upon our arrival, turned stoic and rigid while she took pictures of my baby. What’s wrong? What’s wrong? WHAT’S WRONG? I repeated.

There are a few issues, she said. Sit tight. I’ll be back with the doctor in a moment.

We all stood silently. Helpless. Waiting for The News.

I thought the doctor would come back and tell me my baby was going to die. I looked at no one, not Craig, not my mom, not Bubba. I stared and willed the little thing on the screen to LIVE.

The doctor came in, brows furrowed and silent. I felt like he was mad at me. Or my baby. Or both of us, for causing whatever sort of trouble we were already causing.  Right away, I wanted to tell him to kiss both of our asses.

He began: The problems here are his brain and his heart. He’s a boy. You have a boy.

A boy. I have a boy.

And Oh! Just his brain and his HEART, you say? Thank God. How’s his left toe? That look okay, doc?

He has a large cyst on his brain, and a bright spot, called an echogenic focus, on his heart. His neck is also measuring thicker than is typical.

Bubba left the room. We all thought that next, the doctor would tell us it was over. His neck. His brain. His heart.

The doctor spent another ten silent minutes scrutinizing my boy. I spent those minutes scrutinizing the doctor. I really didn’t like the looks of him.

He asked me to get dressed and told me he’d be back in few minutes.

Please make it one minute, I said. I dress fast.

He came back in a few minutes. I steeled my heart.

He said, “Any of these three – the cyst, the bright spot, the neck measurements –  any of them on their own are markers for Down Syndrome. Together, they lead us to believe that your child very likely has Down Syndrome.  Since you decided against the triple screen test, we won’t know for sure without an amnio. You’ll have ultrasounds every two weeks from now on so we can watch his progress.”

My family – we smiled at each other. We breathed one collective, THANK YOU, JESUS breath. Our baby was not going to die. Our baby was going to have Down Syndrome.

Down Syndrome. Of course, I thought. Of course.

I am love-struck by babies and children with Down Syndrome. Always have been – since my sister and I volunteered with Bubba at the Special Olympics in elementary school and I witnessed their ridiculous determination, joy, and kindness. Other worldly, I always thought. Other worldly. Then when I started teaching, I met a little one named Kerry who made all of her teachers wonder what the hell was wrong with everyone else.  Her determination and joy inspired me to try harder and look harder. I became confused about why I wasn’t more joyful when there was clearly so much to be joyful about.

The first time we went to our new church here in Ashburn, we felt nervous. But as soon as we walked in the door, a twelve year old lovie in a hot pink/animal print dress with black ballet shoes walked right up to me, held out her hand, looked me directly in the eye and said, “Are you new? Welcome to my church. I’m Lucy. You will love it here.” Then she took me by my hand and didn’t let go until we were comfortable and seated, right up front.

There is a lot to DO at a church, and folks are busy. Not Lucy. Lucy of the hot pink dress and ballet slippers and Down Syndrome. Lucy was looking. Lucy noticed the folks who needed noticing. Lucy knows what church is about.

Lucy stands right up front during church and when the band plays, Lucy dances and sings. Not like you or I dance and sing, a little wiggle, not enough movement to cause a stir. Lucy dances like one who is actually WORSHIPPING an all loving God and father might dance for him. Without inhibition, without fear, without insecurity. With joy and passion and abandon that makes me wonder what she knows that I don’t know. Instead of watching the band, I watch Lucy, and that has become one of the most inspirational parts of church for me. Watching Lucy dance.

When they told us our boy had Down Syndrome, relief rained down on me like a summer shower that arrives out of nowhere and breaks the heat.

Of course my baby has Down Syndrome, I thought to myself. It makes sense.

Because I’m special.

Now here’s the truth- and it’s funny because I’d NEVER say this out loud to anyone, but I’ll write it to thousands of people. No matter what happens to me- secretly I believe it’s because I’m special. Special needs baby- YEP- I’m special! Lyme Disease? Well, sure. I’m special. Book deal? Well – duh- special. More diseases?? Is there no end to my special-ness?

CLEARLY- this is a ridiculous, ego-maniacal way to live but I can’t imagine making it through life any other way. I stand by my approach.

And so Craig and I prepared for a baby with Down Syndrome. We rejected the amniocentesis because we were scared it might hurt our boy. We read and read and read. Well, I read and read and read and told Craig the important parts. We interviewed pediatricians that we knew were good with babies who had Down Syndrome and chose the one who stopped us during our interview and said, “You know, I don’t have a single family who wouldn’t tell you that their child with Down Syndrome changed their family in the best possible ways. These children, they turn your life upside down in all the most important ways. And most of us don’t get life changing opportunities like that. There are challenges -yes- but those challenges will shrink compared to the enormity of the new life you’ll have. The new perspective you’ll have. You are a lucky couple.”

Lucky is one word to use. SPECIAL is another.

I went into labor one night at ten and started screaming for drugs upon the first contraction. Then I took a shower, applied my makeup and blew my hair dry. Then I straightened it and curled it. I wanted to be pretty when Chase saw me for the first time. I continued to scream for drugs while primping and throughout the entire car ride to the hospital. When we walked through the doors of the hospital I lied down on the filthy floor and said I wasn’t moving until they brought a wheelchair and an epidural. Craig looked at the receptionist and shrugged his shoulders. “She’s been like this the whole time,” he said. “The whole night?” The lady asked. “No, the whole pregnancy,” Craig said.

I don’t believe in suffering silently.

They wheeled me away and gave me the epidural. I was lovely after that, just a lovely patient really.

Quickly, everything became a blur. My mom and dad slipped in and out of the room. Sister ran in with my black boots with red laces. There was pushing.  Lots of extra nurses around. Then a whole bunch of pressure and a whooooosh and my doctor was holding a chubby bluish man. The nurses swept him away. I was terrified. Why isn’t he crying? WHY ISNT HE CRYING? He started to cry. I did, too. They put him in my arms.  My baby was alive. I was holding my baby. I looked at him and I loved him.  I understood him to have Down Syndrome. I knew to look for slanted eyes, pinned down ears and an extra thick neck. Chase had all three. He was beautiful.  I held him and nursed him and cried and laughed and couldn’t believe any of it was really happening.

My mother in law, a nurse, came into the room and I passed him to her. She looked at him carefully and I watched her flip him over to look at his neck. “He has Down Syndrome, right?” I asked. “I don’t know,” she said.

An hour later the pediatrician arrived. It wasn’t OUR pediatrician, who knew everything about us, it was the on-call doctor from the practice and it was clear that he hadn’t read our file. He swept Chase away and told us he’d check him over and be right back.

I didn’t like that he took my baby away. Not at all. I told Craig to go with him. Go with him, I said. I was advocating. Right away. I’d read all about it.

Craig and the doctor came back. The doctor placed Chase in my arms and said something about good hearing and eyes and then said, “He’s perfectly healthy. Congratulations, mom. We’ll see you in the office in a few days.”

I was confused. As the doctor was leaving the room, I called after him. “Excuse me,” I said.  “Does Chase have Down Syndrome?”

The doctor turned around and looked at me quizzically. “No, ma’am. He does not have Down Syndrome. I usually lead with that.”

I felt that summer rain of relief and also that pit in my stomach that signifies loss. I did not get the baby I was expecting. It’s strange to mentally and emotionally replace the baby you expected for the one you are holding.

Ten years later, I still wonder, what was all that about? 

I felt like telling this story today because children with Down Syndrome have been on my mind and in my heart for a long, long while.  When we are out and we see a family with a child with Down Syndrome I stare a little, and Craig gets annoyed. I can’t help it.  I know that these kiddos have something important to teach the rest of us. We who are so busy getting important things done and they who seem to know for certain what really is important and what is not.  I think they are Little Teachers, if we have eyes to see and time to wait.

Anyway- what do I know?  Not much.

But if there are any Monkees out there who have children with Down Syndrome –  I just wanted to tell you this morning that I am LOVE – STRUCK by your children.

I think they offer something to the world that the world needs more than anything else. Attention to detail.  Senseless joy. Acceptance and love for all. I think that they, and you, are special.

If you haven’t yet…please check out Kelle Hampton’s blog and meet little Nella. I don’t know Kelle, but I just finished her book, Bloom. Kelle takes the brutal out of brutiful.  She just leaves beauty. Sometimes I need that.


Carry On, Warrior
Author of the New York Times Bestselling Memoir CARRY ON, WARRIOR
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  223 Responses to “Birth Story”

  1. […] Attached was a post about a well known mommy blogger, Glennon.  You can read the splendid story here.    She spoke of how she was pregnant and the Dr. almost assured her that her baby would be born […]

  2. This also happened to us. I was on a roller coaster of mixed emotions for five months bc we also opted not to have an amnio. My son was born and I too waited to hear the news. He did not have Down Syndrome. Another roller coaster of emotion. <3

  3. My third pregnancy was the same as yours. At the ultrasound our baby boy had several markers indicating he also had Ds. We of course were prepared to love our son no matter what. I have a cousin with Ds so I am a little familiar with their loving personality and love for life and ability to laugh at the simplest things. That was the first thing I believe I asked when he was born, if he was healthy and if he did indeed has Ds. He didn’t and I do have to say my husband and I both were a little disappointed. We were so prepared to love him just as much as our other children we were blessed. All kids are a blessing.

  4. I have been blessed to know several people with Down’s Syndrome. They are all unique, to be sure, but there is something…

    I hope many can read your uplifting post. It is certainly, an unusual perspective.

  5. Thank you so much for your story. One special boy has woven his way into my heart and the heart of my children in such an incredible way. The friendship my son shares with him is so precious and beautiful. It slows my son down to see the world. I’m grateful every time we are with him for the gift of being present and in awe of the world.

  6. i have a 20 month old who has Ds. It was a surprise diagnosis. While I still struggle with his “lot in life”, it had gotten easier. Thank you for your story. I needed to hear it! My guy really is special….and not because he has special needs! :)

  7. You REALLY need to look up the definition of enormity.

  8. What a beautiful testimony! I work with special needs children and am also an adoptive mom. Please look to some of the many international adoption waiting lists. America World Adoption is a reputable agency I would recommend. Down syndrome babies overseas are often denied basic medical care and nutrition as they aren’t seen as human. We NEED more special people like you to step up and fight, literally, for the lives of these children. Many who will not live past the age of 5 due to harsh conditions in institutions. Perhaps the reason Chase was not, was so that you would have the room and ability to care for your son or daughter waiting for you now??? Blessings….

  9. It was nice to read your story, my mom had the same experience with my little brother. My parents were told he had down syndrome and spina bifida after ultrasounds. The doctors pushed them to terminate. My mom had the same belief, that God had chosen her to raise a special needs baby and that she was special. She switched doctors and after another ultrasound and review of the previous images they said he was completely healthy. We know based on the recorded ultrasounds and printed pictures that he did have signs of abnormalities, and then was healed. He was born 20 years ago as a perfectly healthy baby, my mom felt the disappointment also because he wouldn’t forever be her baby.

  10. Why can’t all humans be like you, Glennon? You are a beautiful person, thank you for sharing your brutiful life. You make me strive to be a better person. Thank you for that, I could use it.

  11. That’s my daughter in that photo! She just turned five on March 2! Her name is Vada Annette. 😉 I absolutley love that you chose her photo out of all of the random ones available on the Internet. We got a ton of grief about this saying on her photo, like how do we know what she’s going to be like she she’s der, maybe she will doubt us. It was silly and kind of petty in my opinion but to me, the saying was spot on for the type of little person who she was then and continues to be. She is strength in every form and she pushes through to succeed, even when her successes don’t measure up to what society says they should, and she doesn’t doubt us, she has confidence in us which make us all strive to be better. This saying, is an example of her character since the day she came into this world. Thanks for sharing it again. Blessings.

  12. When I was pregnant with my first born, Daniel, I read the book “Expecting Adam” by Martha Beck. I was in awe of her, inspired by her, and ready to take on the world. I knew after reading Martha’s story that I could handle anything that motherhood threw my way. Martha was my hero and Adam was my guide. Three years after my son Daniel was born, we learned that he had autism. My world turned upside down. In those first moments, days, and even 13 years later, I remember Martha’s inspirational story of being pregnant with and raising a son with down syndrome and remind myself that I can handle anything that motherhood throws my way. It’s hard, brutiful, AND beautiful. Thank you, Glennon and thank you Martha.

  13. This blog is fantastic. As a genetic counselor, I encourage you to keep on sharing this, as you have been doing, as it is surely speaking to countless others who are going through or will go through a similar journey. Perhaps not with the same outcome in the delivery room, but the adjustment and peace you speak of prior to Chase’s arrival is so inspiring. And, so awesome that you had the opportunity to meet with a pediatrician who met you where YOU were at on YOUR journey. Love it, all of it.

  14. Loved this post – well I love everything you write. Do you live in Virginia? I’m sure that’s not the only Ashburn on earth but I just wondered. :-)

  15. Every. Time. Will there ever be a blog of yours that I won’t learn about love and grace? G, I know you are so busy. The busiest. The busiestest. When my friend Amy was pregnant I wrote to you to let you know she was a single mom / NC teacher carrying twins, one with Down Syndrome and health issues. I completely understand that others grabbed Momastery’s attention (see “busiestest”, above). But this entry makes me think you still should get to know Amy, Patrick, and, most of all, Arlo. Arlo has been in the hospital all of his short/long 6 months, has had multiple surgeries, many scares….and just smiled for the first time. Amy has miraculously found time to document her journey on her heartwarming/breaking blog “www.babyhappypants.com”. I understand if you can’t, or if it takes awhile. But I do hope you can. :) Thanks again for the gift of your posts.

  16. My fifth baby was born with Down Syndrome. She died as a baby, and every time I see a family with a child who has DS, I want to follow them home. I know there can be myriad problems/health issues in people with DS, and I wouldn’t wish that upon anyone. But every day I miss our little girl, exactly how she was, and wish that we could have her and her DS in our lives.

  17. OMGosh! I loved your sweet story and when I got to the end and also read similar “false positive” stories, it just made me sad for the parents who elected to terminate a pregnancy based on that “your baby has Down Syndrome” diagnosis. I wish everyone had your attitude, but in this imperfect world, sadly not.

  18. I got a phone call a few days after my ultrasound (where the only thing said was that I was not as far along as we initially thought, my little guy was only about 14-15wks, not 19,) and the nurse (I was seeing a lot of different midwives, Drs, and nurses – it’s how my group worked) said “your bloodwork came back positive for Down Syndrome.”

    I will never forget that phone call… I was standing in my kitchen making dinner for my in-laws, who were visiting to join us for the ultrasound. I said, ” but… I just had my first ultrasound and the only thing they said was that he was too small to be 19 weeks, he’s more like 14 weeks!” And she said to me “oh, well forget I said anything, then. The timing will throw the bloodwork off.” I cried. A lot. My in-laws prayed over me and Zane. (Bless them!) Needless to say, I did NOT forget what she said. Not even a little. And the very next time I went in, the Dr. I saw tried to talk to me about my “options” and whether I wanted more testing done.

    I straight up mama-bear style yelled at her. To stop assuming based on tests that were done too early. That I did some homework and I now know “positive for Down Syndrome” means only that markers are present, not that it is certain. That it didn’t matter to us if he DID have it – we would not be doing any more testing and that was that. I elected to not see that particular Dr. or nurse again for the duration of my pregnancy.

    Zane was born May 2, 2012. He does not have Down Syndrome.

  19. This was a great story and almost the same I could have written myself. We were told my oldest daughter had a high chance of having Ds. She didn’t… And I too think about how things would be different for us.

  20. “I usually lead with that.” That’s a pretty good line for the on-call doc! :)

    Love this story. Thanks for sharing.

  21. I absolutely loved reading this. 5 months ago I had my baby daughter Ariel who was diagnosed with Down Syndrome at birth. Already our lives have been changed in the most positive way. There certainly is some kind of magic that comes with these special children. I love you attitude it made my day x

  22. I cried while reading your post. And then I cried reading some of these comments. I have a 28 year old son who has DS. I love him with all of my heart. His presence has defined our family…the way we live our lives. I don’t feel any more special or chosen than anyone else. All parents who try hard and pray hard and give much and work for and want the best for their children…are all pretty special in my eyes. But I love your philosophy, and I am thankful for people out there who think like you. Like me.

    I was also deeply touched by the comments made by those who are sisters to a brother with DS. We have 3 boys and a daughter. Our daughter’s heart is particularly tender toward her brother, and it is a precious thing to watch.

    Thank you so much for writing this. Oh, how I pray for more like you in this world…

  23. […] Down syndrome, but together, it meant that the baby would most likely have Down syndrome. Glennon writes on her blog of this […]

  24. Amazing story. So glad that you shared. My son with a multitude of disabilities (including seizures and ID) has begged us to get him a baby sister or brother with Down’s Syndrome. He knows and loves Jesus and believes that they are angels. I am so thankful that he sees the beauty in everyone and knows all people have value. This is one of my fav things about my boy.

  25. Our youngest little bittle was an “at-birth” diagnosis of Down syndrome. Oh how we cried and cried. I look back at the night of his birth and think about how scared we felt; silly us, but our feelings were real and totally okay. Our sweet little love is such a gift from above . At our local Buddy Walk I saw a t-shirt that read, “If Down syndrome was contagious, then the whole world would be love drunk.” Yep, that’s about right. XO

  26. Glennon,
    I felt my heart fill up inch by inch until it overflowed reading this tonight. Our second son, has down syndrome, and although we are still fairly new to this all, I can say without a doubt that he is such an amazing little guy. Easy, always smiling, and has just changed me to the core. Made me a better mama, friend, and person. Thanks for sharing tonight. oxoxoxo

  27. Only a year ago I buried my sweet older brother with Down’s Syndrome. He was 64 years old. 64 YEARS OLD! And he was mine. Our mom and dad died long ago and he was mine. And we barged thru life together. He introduced me as his “son” to strangers in the grocery (I’m his sister.) He always, always believed in Santa even after my own children stopped believing. And he loved me more and better than ANYONE else ever did or could. I never aged in his eyes. He told me I was pretty every time he saw me.He loved fish sandwiches and chocolate cake and ice cream and Batman and the Panthers…and me. In the end he bore the ravages of illness and aging with such grace that it broke my heart that I wasn’t even half as brave as he was. And his last words to me were…”I yuh (love) you.” Priceless.

    • So beautiful. Tears in my eyes for how lovely he must have been.

    • very sweet of you to share…you have the most sweetest brother ever!!! my little baby has DS and I love how he smiles at me every time he sees me …send you a HUG :)
      have a BEAUTIFUL day

    • I, too, am a sister caring for a brother with Down’s. He’s 61, and Alzheimer’s has reared it’s ugly head. He was diagnosed with that 7 years ago, and it’s so sad to watch that sweet boy leave us. Such a bright personality he always had, and so much independence! Now, he’s more childlike than I remember him being, but he’s still as loving as ever. I think the thing I will carry with me forever is knowing how much love a person can have inside if they just get other stuff out of their way. Buddy loves, and Buddy forgives. I feel blessed that God has let me have him to care for in these years, and I pray I’m open to the lessons there are for me to learn.

    • I sobbed reading this, what a beautiful legacy to your brother. You have at once filled and emptied my heart in awe of such Godly love!

  28. You are totally right :)

    We adopted our little ray of Sunshine 6 weeks ago and she just happens to have Down syndrome. Since then, our lives have been full of her joy and we feel so blessed. My 10 year old said it best… “Mom, we are so lucky to have someone in our family who makes us happy all the time.” That’s right buddy, she is a rock star.


  29. (I had to chuckle at the end…You NOW know Kelle (and her beautiful family) and get to bask in her beauty whenever your introverted self feels like it. I love that for you, Glennon)

  30. I’m nearly done with a fairly short book called ‘Living Gently in a Violent World’ by Stanley Hauerwas & Jean Vanier (founder of L’Arche communities) and you are definitely on the mark, G, about how much we can learn and *need* to learn from not only those with DS, but all those with any sort of disability. It’s a fascinating and compelling book that I am so glad to have read. I continue to have hope for this broken and divided world, especially with voices like yours sharing authentically and lovingly out to the masses.

  31. My children don’t have Down Syndrome, but I love this story and I love you. As usual, when reading your work, I cried and I laughed. You help me to remember the important things. Thanks.

  32. I swear you must be my sister or something.

  33. I am stunned. Truly. What an amazingly, beautiful and honest story. What you felt is what the majority of us DS parents felt when our children were born…except they had Down syndrome… You REALLY are special. You really gave me hope with this story, and hope for mankind as a whole. Thanks so much for sharing :)

  34. […] Although there are some spectacular people out there who get it even before becoming a parent. My friend Danielle shared with me an insightful post from a mom who was told her unborn child had multiple markers for DS during an ultrasound. She, unlike most in her shoes, celebrated immediately; knew it was meant to be because she was special. And then her child was born without DS and she was a little bit let down. Wasn’t what she was expecting. What a beautiful story. The complete opposite of most of our stories. The devastation most feel when they receive a diagnosis. But here’s a mom who doesn’t have a child with Down Syndrome, and I thought, “Wow, she really gets it!”  You can read her post about it here…. http://momastery.com/blog/2012/07/07/birth-story/ […]

  35. My girl has Down syndrome and I always love reading DS birth stories… Can I tell you I was PISSED OFF for you when I got to the ending of your story?!!

    Thanks for posting and I’m truly sorry your kid doesn’t have Down syndrome.


  36. Thanks for the post, G. It reminded me of a George Will article I read in the spring that I thought you might enjoy…

  37. My story is the opposite as all the lower level testing came out fine and we got a surprise at birth. I would not change a thing. I love my son so much and although we have a lot more appts and I worry more about him he makes my heart burst with love every day!

  38. Thanks, Glennon. I just got the call from my doctor that the Nugold translucency test came back positive. She’s trying to pressure me into genetic counseling and more tests and I just don’t want it. I want my baby however he or she comes out. I had read this post before and it was the first hit that came up on my google search today. Thanks for bringing me some comfort this morning.

  39. hola, i came from the IDSC FB, and i just want to say thank you for writting this. I cried, I laughted, I felt butterflies.
    Im from Mexico, Im to two kids with down syndrome (one bio, one from the heart) and this was just a beautiful well-written story

  40. A sweet friend of mine shared this with me. She knew your story would resonate with me on many levels. Thank you for sharing your positive perspective on expecting an angel with DS. I pray that other families who receive an early diagnosis will happen upon this post and go about their preparations with as much positivity as you did, regardless of the outcome. Too many don’t have enough understanding or awareness about just how blessed they would be to welcome an “extra special” little one into their family.
    I was especially excited to see some of the comments from other mamas out there with littles with DS. I am going to have to check out their blogs, too. (And after reading this post I poked around the rest of your site and loved your open and honest bio and positive community philosophy.) It’s nice to meet you. Hehe.

  41. I cried all the way through this post. I love it. YOU GET IT. My youngest baby boy does have Down syndrome and I didn’t have much experience with Down syndrome when we got his diagnosis during my pregnancy. I was scared. It didn’t seem like it was a good thing. Many doctors don’t help you see that it is not all doom and gloom. Most approach it as your first doctor did- with a tone and manner that makes you believe your baby won’t even live. My little Elijah is 2 years old now and he shows me what real LIVING is, each and every day. I never approached life’s circumstances as if I was special for receiving the challenges, but I kind of think I am now. Special, because I got a gift in the form of an extra chromosome that puts life into perspective for me.

    I already loved your words and your blog, but now you have an even more special place in my heart. Thank you.

  42. What a beautiful post. Thank you so much for this. I came over here from Living in Yellow and I am so glad I did. Can’t wait to keep reading!

  43. Sitting here with my first born, Cade, as I read this. He’s almost 12 now, and his arrival rescued me from a version of “whole” that was clearly misguided. Here’s a tribute my husband wrote for his 11th bday…


    Thanks for your vulnerability,
    Rebekah Lyons

    • I loved this. I am the 8%. Due in September. Those tests aren’t always right but I refuse to put our little blessing in any danger by doing an amnio. The Dr’s are not helpful and almost try to lead you to abortion. It is just sick. I finally said “we will know one day in September and that’s all that matters.” He will be so loved and is a true blessing from god. Our 4th pregnancy but our second child.

  44. I just found you. And I love you. That’s all.

  45. […] in I’m thinking and praying about the downs children who I met, so happy in foster care with their foster mother, and being put on the list for […]

  46. Hi,
    A friend of mine shared this post with me and I just want to tell you how amazing it is to read it. I have a child with DS. I adopted her four years ago and while it was never my intention to adopt a child with DS it was God’s perfect plan and I’m so grateful. I often tell people that if only they knew, they’d wish for a child with DS. most people don’t get it, its refreshing and encouraging reading your story and knowing, that even though you don’t have a child with DS (yet at least;) you get it. They are not a mistake, they are God’s perfect creations and a gift to those of us who know them. Thanks again.

  47. […] that working with students with special needs has forever changed the way I see the world.  I love this post from Momastery and the story about Lucy.  So true to what I experienced with many of the […]

  48. I was so freaked out by this post because I couldn’t believe we had the same story! Only my baby does have Down syndrome! She was born this past December and so amazing.

    • I was enthralled with your story, because I had a very similar experience only with a different ending. After an emergency c-section, my baby boy was whisked away by the doctor (with my husband in hot pursuit). I didn’t see either of them for a couple of hours as I lay in recovery trying to keep myself sane and not knowing what was happening. Finally, they wheeled me into an isloation room and the nurse said they were bringing the baby to me. I wondered why they thought we needed privacy, but didn’t question it. As I waited (half frozen from the wicked air conditioning and thin sheets), my husband and doctor finally arrived. The doctor looked solemn and and my husband had tears in his eyes, he held our boy who was not moving or making a sound. Time stopped, or rather came to a screeching halt, as it finally dawned on me, “Oh my god” – they brought me in here to say good bye to my baby, he isn’t going to make it! My husband laid him down on my chest, and I stared at the doctor waiting for him to speak…my heart was pounding…then all I remember is that the doctor said something like “your son appears to have the markers for Down syndrome and we will have to do some testing….” I burst into tears and everyone tried to console me…I couldn’t barely speak to let them know I wasn’t crying with sadness or grief but joy and relief! I thought my boy was going to die! Hallelujah! Down syndrome we can handle! One of the things that drew me to my husband in the first place was his love of children and adults with Down syndrome and other unique challenges. This made SO much sense. We ended up consoling the health care workers around us as they waited for us to have some kind of break down. It never came. I did not want a single person near my boy who didn’t share our joy at his birth – I wanted him to be born knowing that he was welcomed and loved without fear/regret/sadness. And when I thought back to my appointments with the OBGYN and all those other families sitting around us in the waiting room (here’s my egomaniacal moment), I knew that we were chosen and our baby was given to us as a special gift. Today, my boy is 7 and while I’d love to say he’s happy and joyful, innocent and full of wonder all of the time – he is also fiesty, incredibly strong willed, a keen manipulator, and frequently cranky – he’s the perfect combination of his mother, father and one little extra chromosome and we wouldn’t change a thing.

      • AWE! I was reading and so scared for you that you were about to experience the loss of your baby.
        Definitely happy tears from me, for you!! Thank you so much for sharing :)

  49. I have a child who has Down syndrome, and while I appreciate what you are trying to do, this kind of stereotype bothers me. Yes, my kid is happy a lot of the time, and she wears her heart on her sleeve, but she is still a full-fledged person with a full range of emotions. Saying “oh they are so happy!” is not fair. It turns her into a one-dimensional person, and people with DS do not need any more of that. And “Little Teachers”? Yes, she has changed my life, but I would not put that kind of burden on her. Being inspirational is a lot of pressure, I think.

    You should read this article. http://www.xojane.com/family-drama/down-syndrome-with-alzheimers

    • Hi Cate,
      I also have a son with Down syndrome and after reading your comment, had to go back and re-read Glennon’s post. The thing is, she never says, “Kids with Down syndrome are always happy” In fact, she cites the fact that her experience has been with their determination and the way in which she has witnessed them expressing joy. These traits don’t seem to boil our kids down to having no other emotions. In fact, after reading this, I felt that she “gets it”.
      Any way- I am with you on not wanting our kids to be seen as a stereotype, but I just didn’t hear her trying to do that in the story she shared. We need to definitely be advocates for our kids, but I also think it’s important to choose our battles. To be discerning. I trust that you felt you needed to do that here, but I guess that I wanted to comment to say that I don’t agree.

      As another parent of a child with Down syndrome, I don’t agree.

    • Hi Cate,
      I really agree with your point of view, and I laughed out loud reading the article that you shared a link to. Thank you so much for sharing your view point. It is so easy to stereotype and in doing so limit people from seeing our kids as full people, with all ranges of personalities, both good and bad.

  50. Beautiful story. Our family would not trade our 4year old Ella Grace for any typical kid in the world! She is the glue to our family.

  51. What a birth story! The funny thing is, partway through it I had to look at your bio cause I was thinking “I’ve been to this blog before, and I don’t remember her having a child with DS…is she pregnant or have another baby since I last visited?!” LOL, then I got to the end of your post and got it :) I have a 9 month old with DS, and my prenatal reaction was not as positive as yours, but now that she’s here, she’s definitely added a lot of joy to our family! Thanks for your positive words. I love your writing style and humor :)

  52. This happened to me. I also declined triple serum screening. I was also told about a nuchal fold, heart defect, short legs. But I did have the amnio, not because I would ever terminate, but because I’m a knowledge junkie. I had to know for sure.

    Liam didn’t have Down Syndrome, but he has ten different heart defects, has nearly died three different times, the first time while still in my birth canal.

    I never thought I was special. I never thought I was cursed. I have always thought I was blessed to be given a miracle to foster. Having a special needs baby didn’t make me special. Going thousands of miles to save his life, changing the world by starting two nonprofits, and helping others through my ongoing advocacy are simply my ways of telling God thank you for choosing me to be Liam’s mom. Now I think all moms like me are special, not because of who we were or who we are, but because we were chosen to guide these kids through so much struggle and pain and help them embrace the life they fight so hard for.

    Half of all Down Syndrome babies have a heart defect. One in one hundred babies in the general population have a heart defect. We are everywhere and still invisible with the most common birth defect that kills more children every year than all forms of pediatric cancer combined. Heart defects shouldn’t be a secret just because we can’t see them. Just sayin’ because that’s my job as Liam’s mom.

    Amanda Rose Adams
    author Heart Warriors, A Family Faces Congenital Heart Disease

  53. Glennon, this post was beautiful!!!! We are expecting our first and kind of got pressured into the NuGold translucency test during our first visit to the doctor. As if knowing our baby had a birth defect would change things. It really bugged me that the doctor just assumed we would care, that we would perhaps make different decisions about going forward with pregnancy if we learned our baby wasn’t “perfect.” There’s a nine-year-old girl named Nancy at our church who has Down’s Syndrome. She is unquestionably difficult to contain and her parents appear tired and worn–more so than the average parent. But Nancy radiates an undeniable innocence that the world so desperately needs. It breaks my heart that so many people view children as objects and adornments, seeking ones that are perfect. Children are divine creations of our Heavenly Father. I don’t think there is a “normal” in God’s eyes. He loves each and every one of us individually. It was so refreshing to read your perspective on Down’s Syndrome children. I loved it.

  54. Anne Lamott has a wonderful section in one of her books where she says that she thinks of some people, including children with Down’s Syndrome as God’s spies. They are sent to see how we will treat others. I thought that was lovely!

  55. I have always been drawn to kids with DS too! I thought I was the only one out there. I have to keep myself from looking at them too much when I run into them in public, as I’m sure their parents will think I’m gawking at the “abnormal” child. But it is just that I am so drawn to their joy and sweetness. I just want to hang around them a bit and enjoy that joy they seem to spread wherever they go. They truly are “special.”

  56. I am love struck too, I have the most wonderful little girl in the whole world (who happens to have down syndrome) Thank you for sharing your story, I loved it! I started a blog a super long time ago and haven’t updated it in forever but it called “It gets better, I have proof.” You can see our little Maddie and how adorable she is!!

  57. Oh, I loved this. Loved it even more because I just realized you live in my town. And because my daughter has Down syndrome (although she’s not called Lucy) and is likely close in age to one of your girls. Eh, who knows? Maybe they’re in the same school! Beautiful post. Thank you.

  58. Lovely Glennon, you are a beacon. There is never a moment when someone is touched by your words.

    Thank you for attaching little Nella’s story. What an emotionally wrenching, amazing story of love.

  59. when we were preg w/ our 2nd (our only hospital baby, the other 3 were born at home…yeah, i’m one of those crazy women LOL) the ob we saw REALLY wanted us to do all kinds of genetic screening and see a prenatal geneticist (i think that’s what they’re called) because i have a niece w/ a genetic disorder, my hubby has a cousin w/ Ds, and there are a few other genetic things flying around our family trees…both hubby and i looked him in the eye and essentially told him straight up no because no matter what kind of baby we got we’d love the baby all the same, she (as w/ the the others) is perfectly fine, but even if she’d not been we’d still love her just as we do now…it breaks my heart to hear the stories of how many babies are not brought into the world because of a perceived problem, each and every child is a blessing, each brings their own “bag” of issues (mine struggle w/ reading and can barely sit still for more than 30 seconds unless they’re zoned into the boob tube) but the joy each of them brings is worth all the troubles along the way! 😀

  60. I am new to the blog but I love everything that I have read so far! I found this post through a friend because we have a four year old son with DS, named Sam. I appreciated your birth story, I loved the twist:), it was such a refreshing thing to hear someone want a child with special needs. I am so thankful that Sam has brought us into the special needs community and we hope to adopt another little guy with DS soon through Reece’s Rainbow. If you want to see how adorable my Sam and other kids are hop over to my blog. http://www.thebaxternews.blogspot.com. He is worth it:) Excited to visit your blog more, I am in love with the Monkee see Monkee vision!!

  61. I saw a bumper sticker one day that said “My kid has more chromosomes than your honor student!”

    Isn’t that WONDERFUL?

  62. Glennon, I haven’t commented in awhile… I knew a little bit of your story but not all. Thank you for sharing… and thank you for loving our loves with Down syndrome with such a pure heart… because you are “special” you still get to have a “Down syndrome birth story”~ just Glennon-ized ;). xoxo

  63. I just wanted you to know that I was not offended by your post and I do have a son with Down syndrome. I had never EVER heard of someone being disappointing that their child wasn’t born with Down syndrome, like they had thought. That is why I appreciate this post and thanked you for writing it. With a 90% termination rate and more prenatal testing coming out, is so nice to hear positive things said about individuals with Down syndrome, so thank you……….again.

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