Noah’s Birth Story: How Down Syndrome Changed Our Lives…For The Better

Everything Was About To Change. Forever.

I’ll never forget the day I was sitting at our kitchen table talking on the phone to a friend when my wife comes running into the room, and saying,

“Rick….get off the phone.”

I quickly hung up the phone thinking something was wrong. No sooner than I can say “What’s wrong?” my wife shows me this plastic stick with two lines on it.

These two lines were going to change our life.

Forever.

This changed every thing.

We were having a baby…!

I was in disbelief! I was in shock! I was happy, joyful, excite….but most of all in love with this baby that was already growing at a rapid pace inside my wife’s tummy!

I couldn’t wait for this day to happen.

But it was happening….

….we were going to be parents…!!!

The Wait

The next ten months seemed to last forever. I couldn’t stop thinking about how much fun it was going to be to raise a child, especially with my wonderful wife.

My best friend, and my wife!

Abbie and I spent much of that ten months creating “Noah” in our minds.

As soon as we found out we were having a boy, we knew just what he would look like, act like, talk like, and dress like.

Oh, when it came down to Mac, or PC…he was defiantly going to be a Mac kind of guy.

We even picked out his name. Noah David Smith

I absolutely loved going to Abbie’s OBGYN appointments. I LOVED getting to see Noah on the screen as they preformed ultrasounds. I watched him grow from the size of a pea, to a grape, to a peach, to a watermelon.

I remember hearing his heart beat for the first time. Wow! (I cried like a baby.)

growing…Growing…GROWING

I couldn’t believe this was real. I couldn’t believe my wife was carrying around another human life inside of her. I couldn’t believe I was going to be a dad.

We had a blast the next ten preparing for Noah’s arrival. Baby showers, parties, getting the nursery ready, (We even painted it ourselves!) reading the mommy bargain books, and of course picking out the cutest new-born outfits on the planet!

I seriously don’t have a clue how I got anything done during those ten months. The excitement of becoming a parent was like a child waiting for santa the night before Christmas….over. and over, and over again. Each night wondering if this could be the night he arrives!

On December 14, 2010 we went into the OBGYN for a check up, and found out my wife’s blood pressure was a little high. Noah was 36 weeks old at this point, and the OBGYN said she wanted us to come in first thing the next morning to induce labor.

Wow…! I couldn’t believe it. We were really going to be parents! This was happening.

After the appointment we drove around for a bit running last-minute errands, and I don’t remember if it was that day, or perhaps a few days before…but I remember telling my wife,

“You know sometimes when couples at church get up on stage and share a really sad story about something that happened to their child, and everyone in the audience is crying and stuff. And you feel sad for them, but in your mind you are thinking about how glad you are that happened to them and not you…I don’t think I could handle something that.

Sometimes I get scared and I think that God is going do something like that to me since I’m a communicator. Ya know? I sure hope not though, I really don’t think I could handle it. I’m so glad everything is fine with Noah. We are so blessed that all of his sonograms and everything are perfect. I can’t wait to meet this kid.”

We went to one of our favorite local mexican restaurants, Posados, and had one last meal as a “child-less” (no-child-out-of-the-womb) couple. We had no idea that last meal was actually the last meal for our life as we knew it. Because in less than 24 hours our world was going to be turned upside down.

Our entire life would be changed by the time we had our next dinner.

As we dined on ten-dollar enchiladas, our little Noah was just hanging out in his mother’s womb waiting to come out and meet us. We spent the next hour eating, talking, laughing, asking each other questions. We were so excited.

We walked away full.

After dinner I was so excited I didn’t want to go home and try to go to sleep. So to kill time we went to Target and just walked around until they closed. Once we got home I’m pretty sure I stayed up the entire night thinking about how awesome it was going to be to finally get to meet our little Noah!

The day we had been waiting for was finally here!

The Long Wait

We woke up that morning and stopped by Chick-Fil-A. Abbie couldn’t eat, but I could..and I was starving. (I know, I”m a horrible husband.) We arrived at the hospital around 6:15 in the morning and got all checked in. I was so nervous. I was so excited. I couldn’t stop thinking about what Noah was going to be like. What the labor was going to be like. If I was going to faint once Abbie started to go into labor. (I seriously thought I might. I have a weak stomach for stuff like that.)

Our entire life was about to change.

We finally made our way back to the pre-labor room where they induced Abbie.

There was a very uncomfortable couch in our room which I claimed as my home base for the day. We spent the next twelve hours napping, reading, watching daytime talk shows on the tv, (is it just me, or does it seem like every hospital room in America plays Montel Williams and Maury Povich on repeat all day long?) and playing some games on the iPad.

I tried to sleep as much as I could because 1.) I had zero sleep the night before, and 2.) It helped me pass the time. When I was sleeping I couldn’t keep track of time. I just slept. (Which was awesome considering how the minutes oozed by like hours.)

Doctors and nurses came in all throughout the day to check on Abbie, and each time that door opened I sprung up from coach like publishers clearing house was knocking on my door, hoping they would say, “It’s time.” But, they didn’t. They just kept saying, “Ok…he isn’t ready to come out yet. We’ll come back in and check on you in a little bit.”

One of my greatest weaknesses is that I’m not a patient person, (I’m working on it.

Be we had to wait……
and wait…….
and wait…….
It was excruciating to me. I just wanted to meet this little guy!

The Wait Was Over

After 12 hours of labor (and waiting!) our OBGYN came in and said that we had options; 1) Keep trying for another twelve hours, (or longer) or 2) perform a C-section.

Abbie

After 12 hours of labor, and not knowing for certain if another 12 hours would result in a baby boy, we opted for option number two. From that point forward I feel like my entire life has been in fast forward. Before I could even pack up my iPad my wife was wheeled back to the delivery room, and I was dressed in a pair of light blue scrubs.

There was about five minutes where my life felt as if it was in super slow motion. It was when my wife was out of the room, and I was all-alone in the room where we had been all day. I prayed. I paced. I jumped up and down with excitement. I prayed. I paced. Over and over again.

I couldn’t believe my wife and I were finally about to meet this little boy we had waited so long to meet.

Killing time while waiting for the nurse to come and me!

After what seemed like an entirety a nurse came and got me and brought me back to where they were performing the C-section. Thankfully they had a curtain up that allowed me to only to see my beautiful wife’s face. Which was fine by me.

I remember wondering all my life what it would be like in that room. I wondered what I would feel like. If I would break down and weep with joy. If my wife was going to be like the wives in all the movies I had always seen where the wife’s are screaming and cursing the entire time.

I wondered if my wife was going to be in extreme pain. And of course, I wondered if I would faint.

It was nothing like I expected. My wife looked great. No one was screaming. The doctor and nurses were talking to about my thoughts on social media and teenagers while they were pulling Noah out of Abbie. It was surreal.

I grabbed Abbie’s hand and repeated a conversation that went something like this: “Are you ok? Do you feel anything? Is everything ok? I love you. Can you believe we’re about to have a baby? Wow. This is crazy. I love you.”

In what seemed like about five minutes, the doctor said, “Oh, wow there he is!” and then “Wow…! Look at those cheeks.” I was so nervous, and so excited. My heart was racing a million miles a second. I wanted to see him, for myself.

Then she said, “Would you like to see him?” I said, “YES! YES! YES!” Then my heart froze. Seriously. She palmed his little head like a basketball, and lifted him above the sheet, and at 6:15 on December 15, 2010, I saw our beautiful son, Noah David Smith, for the first time.

My heart froze.

It was love at first sight!

I seriously thought I was going to pass out; right there in the hospital!  He was amazing. He was our little boy. He was so beautiful. I wept tears of joys. He was the most beautiful person I had ever seen.

I remember thinking,

“Wow…how in the world could I help make a baby that beautiful!”

I was star-struck.

I was seriously in awe.

That little boy had my entire heart. I was  in love with him the second saw those 2 lines on that plastic stick, but seeing him for the first time, looking into those big beautiful blue eyes of his for the first time, was more than I could handle.

It was overwhelming.

I simple could not believe our boy was here. (I remember thinking; Wow…shouldn’t she be more careful with him? I had always been told you had to hold a baby very, very gently. Turns out they are a lot tougher then I thought.) 🙂

He

I watched like a hawk as the army of medical professionals cleaned him up.  I couldn’t take my eyes off of him. The doctors and nurses were whispering to each other, which I assumed was standard end-of-delivery-water-cooler-talk. (I’d learn very soon what all that whispering was about.)

I took pictures, and reported back to my wife everything I saw. (She was pretty out of it at this point.) I seriously looked like the paparazzi with all the pictures I was snapping. In fact, I think I may have actually strained my finger from pressing the shutter on my camera so many times!

Doesn’t she look good for just having a baby?

After a few minutes one of the nurses came over and handed me our son. I got to hold our little tiny adorable baby Noah for the very first time! He was all wrapped up in this little blue blanket and cute hat.

I couldn’t believe I was holding my boy.

My own flesh and blood.

It was overwhelming.

We held him. Kissed him. Abbie had a second to look at him as she was going in and out of sleep.

This was one of the happiest days of our life!

They took Noah out to weigh him, and I asked if I could come with them and take a picture of Noah on the scale. As the nurse and I wheeled Noah down the hallway to the nursery, we passed the waiting room where our family had been waiting. They all ran out to grab a quick glimpse of our beautiful little boy.

The nurse took my camera and snapped a few pictures of Noah on the scale, and said she would have Noah up in our room with us in about an hour!

Wow! I couldn’t wait.

You gotta love those chubby little cheeks!

I took my father and mother in law in one at a time in to see their daughter in the post-op room. They were so happy to see her.  I was busy using my cell phone to take pictures of the LCD screen of my DSLR camera so I could text Noah’s first picture out to all of my friends. (And of course tweet and Facebook them as well!)

I wanted to get this little guy

As my wife’s medicine was wearing off she was shaking and acting funny, and it scared me. But within an hour she was back to normal. The nurses were huddled up in our post-op room whispering with more water-cooler talk, and finally our OBGYN came in. She said

…everything went well, Noah was beautiful, and that Abbie would be back to normal shortly.

We were then asked about five times what the name of our pediatrician was. They said they just wanted to make sure they had it right. Again, that seemed normal to me. No biggy.

They wheeled Abbie past the nursery (very, very quickly) so she could look her little boy again, on the way to her hospital room.

On the way to our room. (Our night was just starting.)

Normally the nurse in the newborn nursery will hold the baby to the window for a few minutes so the new mom can spend some time looking at their sweet little baby before going to her recovery room.  In our case Noah stayed lying down and they rushed Abbie past the newborn nursery windows very quickly.

This was our first time to have a child, so just figured it was par for the course.

Finally we were in our room surrounded by parents, presents. and friends. We were so happy and blessed that everything had gone off without a hitch. It was like a mini-party in our room. It was so exciting. We couldn’t wait to see our boy again!!!

We were starstruck!

I kept going back and forth to the nursery to stare at our little baby. I couldn’t take my eyes off of him. He was stunning. Everyone was crammed into our little hospital  room just waiting for little baby Noah to make his grand entrance.  Cue the balloons, bubble gum cigars, and sparking apple cider….it was about to be a party!

Little did we know that our entire life was about to change.

Forever.

The Fifteen Minutes That Changed Our Life. Forever.

After an hour had gone by and our son still hadn’t been brought into our room I started to become very impatient.

After two hours of waiting my wife called the nurses station and was told everything was ok, and they would be bringing Noah in soon.

It was a Wednesday night, and the hospital seemed busy so I thought nothing of it. We waited another hour, and still no Noah. By this point friends that had stopped by had left, Abbie was completely exhausted, and all we wanted to do was hold our little boy.

At a few minutes past ten pm our pediatrician  (who was a friend and former co-worker of my wife’s during her medical residency) walked through the door, sat down, hugged Abbie, and asked me if I wanted to come over and sit near Abbie.

I was sitting next to my mom on the couch, exhausted, and just wanted to see our precious little boy. I figured your pediatrician coming in at ten o’clock was normal, especially since she was also a personal friend of my wife’s. So I jokingly said,

“Nah. I’m ok. I’ve been sitting next to her all day!”

After all, all she was going to do was tell us congratulations and talk “doctor talk” with my wife, there wasn’t any need for me come sit by my wife. She was fine. And I was very comfortable on the couch with my mother.   (The couch I was on was only about four feet away from her, so it wasn’t like I couldn’t hear what was being said.)  Our pediatrician looked at me, and sounding a bit taken back that I didn’t come join her on my wife’s hospital bed said,

“Ok.”

There is nothing I could have ever done to be prepared for the words that would come out of her mouth in next 180 seconds….

“First, I want to tell that your son is adorable.”

(I later learned that this is doctor talk for “I’m about to tell you something that’s going to feel like getting punch directly in your soul.)  She said had just spent some time with our son and he was

so great….

had the cutest little checks….

and…low tone…

something about his eyes……

and the shape ears…

and his toes….

and then she said these 10 words that would change the entire direction of our life;

“…and you’re aware those features are consistent with Trisomy 21….”

and something….something…something…

“Down Syndrome…”

The  next 3 things seriously summed to happen at the exact same moment….

My wife starts to cry.

Our pediatrician starts to hug her.

I jumped up off the couch and in the 1/2 of a second that it took me to get to her bed from the couch was trying to figure out what just happened.

TIME FREEZES

I had never in my life heard the phrase “Trisomy 21.” I was so confused.  Why was my wife crying?  Why did our pediatrician have my wife in a bear hugh?

I had just heard her say less then four minutes ago that our little boy was adorable..and that everything was fine. What was in the world was going on?

I’ll never forget the next few minutes of my life. It’s like those moments are burned into my mind.  I can close my eyes and it’s like I’m standing right there….

I kneeled down on the floor of that small hospital room beside my wife’s hospital bed, grasped my sobbing wife’s hand, looked at my wife’s beautiful face, looked at our pediatrician, and…shakingly, fearfully, quietly, barely whimpered these words,

“So our son has Down Syndrome?”

To which she quietly answered:

“Yes.”

I immediately clung to my wife and we wept like we’ve never wept before.  It was seriously like time had just frozen.

I caught a glimpse of my mother in law look at my father in law as I was clinging to my wife and I saw them look at each other with a “what in the world is going on” look. And he was trying to figure it out also. They didn’t hear what the pediatrician said.  It all happened in less than three minutes. No knew what was happening. My mother in little brother were also wondering what was happening.

They were confused. And so was I.

Our family excused their self from the room, and we sat there with our pediatrician on that small hospital bed in silence. There were no words for the next few minutes. Only sobbing.

Uncontrollably sobbing.

I felt like someone had sucker punched me directly in the heart.  What just happened?  Where were the balloons? Where was the celebration? Where was my son.  I had no idea what just happened to me. It was like the wind was knocked out of me…times a million.

Our pediatrician sat there with us for a little while longer, and told us a few things about what to expect, and what the next steps were. She had thought Abbie had already known, which was why she was  surprised that I didn’t come sit by my wife when she had asked me to, and also why she didn’t ask for our family to be excused before giving us the Down syndrome diagnosis.

She went on to say she had listened to his heart (which is a major medical concern for a baby born with Down Syndrome) and didn’t hear anything wrong with it.

Finally, she asked if we had any other questions (we had a million, but what we really wanted to do is just see our little boy.) and told us they would be brining Noah in to see us = shortly.

It is interesting to note that we later learned that this was the reason they rushed Abbie to her room without getting to get a good look at her baby in the nursery, and hadn’t brought him to the room yet. Since my wife is a pediatrician they didn’t want her to self diagnose her own baby.

All of the whispering in the post-op room was the hospital staff trying to figure out how to contact our pediatrician this late on a Wednesday evening.  So all of the time we were waiting for them to “clean up” Noah, we were actually waiting for our pediatrician to arrive at the hospital to tell us Noah was born with Down syndrome.

They wanted us to see the pediatrician, and for her to tell us Noah was born with Down syndrome, before we saw our son up close and personal.

Our pediatrician hugged Abbie once last time, slowly got up off the bed, hugged me and walked out the door. That little metal “click” as the heavy hospital door closed shut behind her sound sounded louder than ever before.

And there we sat.

Alone.

Scared.

Worried.

Confused.

Anxious.

Frightened.

Sobbing.

We held each other and wept. Harder then we had every wept about anything ever before. We didn’t say anything. We didn’t know what to say. We just wept.  There were no words to say.

To be honest, in that moment I really had no idea what I was weeping about. After all we had just had a baby. This was a birth. Not a funeral. No one had died.

There were supposed to be bubble gum cigars, streamers, balloons, laughing. Not sobbing. Sobbing is the very last thing you’re supposed to do when your child is born.

At least that’s what always happened in the movies.

But this wasn’t a movie. This was our life. And it had just been turned upside down.

A few minutes later our family came back in and we all hugged each other. I remember stepping out into the hall way with my father in law (my father had passed away a few years prior) grabbing him, and the two of us just weeping together. Loudly.

I had only seen my father-in-law tear up a few times before. It was always when my wife (his daughter) had to leave their house (out-of-state) after a vacation or holiday to head back home. This crying sounded nothing like that crying. This crying came from somewhere deeper. There are no words to describe how it sounded, and I hope I never have to hear a sound like that again. It was two men weeping from the depths of their soul. Again, I’m not even really sure why.  But there in that hospital hallway, for what seemed for hours, two grown men held each other and wept. Like we had never wept before.

We all finally calmed down and started to catch our breath. (It’s amazing how the entire direction and course of your life can change in a matter of minutes.) After about fifteen minutes had passed the sound of the metal lock opening on that large wooden hospital door sounded louder than it ever had before. (For the 2nd time!)

And through that door walked a nurse pushing a small, rolling, clear plastic crib with our son quietly (and cutely) resting inside. He only wanted one thing at this point in his life. And it wasn’t an iPad, a new rattle, or the cutest new onesy.

It was his mommy and daddy. And Love. A whole lot of love.

Wow. There he was. Unbelievable.

And he was about to get a lot of it.

Let The Heart Stealing Begin

I later learned that my wife had told herself that no matter what, she would be smiling (not crying) the first time she held her baby.

I

And as hard as I’m sure it was for her, she made good on that promise. I’ll never forget the second they handed my wife our sweet son Noah. I have never been so proud to be her husband. It sounds weird, but I could see the love in her heart on her face. Despite all that had just happened in the last few minutes, she was so happy. She loved this kid so much. I loved that kid so much.  And I loved her so much.  I loved our family.

There is nothing in the world that compares to the feeling a parent has the first time they hold their new-born baby. It’s indescribable. But it’s awesome.

This little boy had our hearts.

I could write forever about that first night, but I think you probably have an idea of how it went. We loved on our son. We loved on each other. We hugged a lot. We wept a lot. And we prayed a lot.

The Morning After

The next morning our OBGYN came in and said,

“I’m so sorry. I went home last night and looked over everything to see if I somehow missed something.”

(I was thinking to myself, 1.) “What is there to be ‘sorry’ about? We just had a baby!” 2.) Even if you ‘missed’ something it wouldn’t have changed anything. We love this baby so much!”)

For some strange reason the OBGYN wouldn’t look my wife or I in the face. It was bizarre. Like she was embarrassed. It was a very awkward visit. Then she asked my wife if she’d like some antidepressants. My wife said, “Ummm….No. I don’t think I’m depressed. I think everything I’m feeling is normal.” The OBGY said ok and that she would note in her chart that she could have them if she wanted them…..Which prompted the nurses to awkwardly whisper to my wife all throughout the day, “Would you like your medicine?” We both sort of laughed it off.

I just couldn’t get over how “un-positive ” everyone was. I just kept thinking to myself how strange it was that God just allowed us to have a this beautiful baby boy, yet everyone was acting so sad.

This was a birth, not a funeral.

And from that day forward we knew we’d always celebrate his birth.

Will you help us share the story that Down syndrome is ok?

We are doing something really unique by telling the story of our son’s life via one-minute, daily videos. We believe that he has a story worth sharing, and we hope you’ll help us share his story; the story that all children (regardless of a disability) are so worth loving.

The story that Down syndrome ok.

Please be sure to connect with us (and thousands of other amazing families) on Noah’s Dad Facebook page, and follow Noah’s Dad on Twitter.  I really believe that together we can help show the world it’s time to view children like our son Noah as just as worthy of love as every other person on this planet.  Will you please take a second to help us do that?

Be sure to enter your email in the box below to receive all of our updates. We look forward to sharing our story with you.

View Comments

  • I just wanted to thank you for sharing this beautiful story! I am a mother of a son who is 18 (Austin) whom also is Down Syndrome. I can't begin to tell you how blessed we are to have such an amazing son! Your story was so similar to ours that I just wept the entire time I read it..Thank you again for sharing your experience!
    Michele

      • Hi: My son Hamza with DS is 2 1/2 months old. He was diagnosed after birth. I have four kids. Hamza is the fourth one. My pregnancy and delivery were great, better than before. Every time my doctor used to tel me that everything is going on well. On my first visit she said that the baby movements are fast which shows baby is very healthy. Scan were also good. After first two scans my doctor told me that she is shifting to the other branch of the hospital so I must go to some other doctor of the hospital. I went to another doctor( my previous doctor spoke to her about me) When I went to her she was confused and told me the dr. has already spoken to her about me. After that everything was suspicious going on, I realize it now. That dr. still in the same hospital, not shifted. After the delivery I was discharged with no diagnosis. My baby was unable to pass stool and was vomitting on 5th day when I went to the hospital the dr. asked me" Nobody told u about your baby" I asked" What?" He said that the baby has down syndrome. I was shock. Killed....... dead. I knew a little about it but it was very scary whatever I know.From that day I am searching the net which increased my stress. Then I started reading parents and down syndrome success stories to get peace of mind. There is no parent support group in my area. So through one of my friend I am connected to another fiend in UK. I live in UAE. I have read ur story many times. I have cried a lot...a lot....a lot. Since taht day I have cried many times.and getting courage from sites like ur site. My son will be having a surgery soon. He is having herschprung disease. The surgeon is hopeful that it will be minor. I am giving him rectal wash every day. However he is doing great. Sometimes I forget that he has DS. He feeds well. Has a good grip . Holds my hand tightly. When we talk to him, he resonses.Talks in baby language. Now a days he is gaining good head control. I am following therapies sessions of Noah because there is no help like this in my country. My request to you is kindly put therapies in order like First month , second month and third month therapies and so on . It will be a great help for parents like us who are getting knowledge from your web site. What you people are doing its a charity, not for a day but charity forever. Thanks

        • I just wanted you to know that your comment has inspired me to create me own blog - a place where I can share everything we have learned in the past year with others who may not have access to the support groups and therapists that we do - and just to share everything I have researched and experienced myself. If you get a chance, please check it out at http://www.journeytoluke.wordpress.com.

          Also, you can check out the Jerome Lejeune Foundation online. I contacted the US President to share our prenatal story for their Stories of Love and Hope and he shared with me the following: We are in the process of opening a clinic in Dubai to help families who have children with Down syndrome. The birth incidence in the Emirates is about 1 in 350 or twice that of the US.

          http://lejeuneusa.org/Stories_of_Love_and_Hope#.VK8bBKZWhOV

        • Naziakhalid,
          My son also was born with Hirschsprung disease. I don't know anyone personally who has a child with this disease nor do I hear of it except on the net. I hope your son was able to have surgery and that he is doing well.

        • Hello my name is Cassandra and u was reading your story and mine is simaler to yours only thing is my son was 8 months before I was told he had down syndrome I would constantly ask his doc questions concerning his soft spot and why it wasn't closing up and she would tell me he was fine and that it takes some time to close up.also my son is a twin which he's twin sis is fine. So here I am 8 months in with no answers about why my son wasn't sitting up are anything I went from webpage to webpage searching until one day I recieved a call and that's when I got the news my son has trisomy 21 I had to leave work now my son is 1 years old and he's doing fine I enjoy reading stories of other parents that have kids with Down syndrome it gives me hope and peace thank you guys for taking out the time to tell your stories

        • @Nazia, I just read your story and is very much similar to ours. I am Canada right now and my son is 2 1/2 years old. Me and my wife were thinking to move to UAE for long time. I lost my job in recent downturn so finally deciding to move to UAE. Now Just need your first hand advice and suggestion as to what opportunities will be there for my son regarding schooling? Will it be a good to move there?
          thanks.

        • Hi nazia my name is Fatima I live in England I have 13 months week old daughter with ds It's not end of the world she great blessing for me I have 2boys 4years and 6years they love her she try to walk She say few words daddy she call I pad paa she try to play on I pad she really alert when she born I was really worried and upset but she doing really well plus she having Islamic healing. Just don't worry keep praying for your little one and love him spend lot of time with him reading books taking him out

      • Hi you guys what an amaizing and uplifting story. Your little boy is beautiful. Your story brought back some very strong emotions as my husband and myself wemt through the same experience 12yrs ago when our beautiful baby girl arrived into the world. She is a briliant kid and such a hard worker in and out of school. Sometimes i worry for her thats why it is so good to hear a positive story like yours as you say to spread the word about how wonderful and special our extraordanary kids are

      • hey Noah's dad. I know this is late and all but we figured out my mom's ultrasound came back with shiny dots on my un-born brothers heart. It can be a sign for Down syndrome but we don't know yet. I'm 12 going on 13 and I'm worried I won't love him as much as I need to and I feel really upset even though there is no positive that he has it yet and advice?

        • I really think you WILL love him, not because he has or doesn't have Down Syndrome, but because he is your brother and you are the big Sister <3 .

      • Thank you for sharing Rick! Your experience is identical to ours 4 months ago with our son Tui. We wouldn’t change Tui in any way shape or form, he is my life, heart and soul from the moment I saw him but we felt the same way with medical staff acting so negative. We couldn’t wait to take our Tui home and get away from the sob sympathy we were getting which was the complete opposite to how we felt about our beautiful baby boy. No regrets and wouldn’t change a thing if I was given to opportunity to :-)

    • Wow, I really take my hat off to you, its sad bought tears to my eyes, i'm 8months far and honestly love my baby boy to bits, but in many ways I don't know how you do it, it must be so scary. How do you cope with something like that? I am truly inspired by this he is so adorable

    • Moreover I want to say your family is the world's most beautiful family and Noah is such a lovely kid I have ever seen. Here is my Hamza with his elder brothers.

      • Hi,

        This is a reply to Hamza's mother who posted in August 2014. First of all, you have a beautiful family! Secondly, I am so sorry that you have had difficulty finding support and resources for him in your country. Our son Luke is 10 months old, and we are fortunate that he is healthy. He just had a small hole in his heart and diastasis recti. We are fortunate to have great resources and therapy. I'm guessing hamza is around 6 months now? For eating, I would try baby led weaning (no purees) if you aren't doing that already. It's a great motivator to develop good eating habits and work on fine motor skills. Also, the book that is mentioned on this site is a great resource and gives ideas on therapy. At 6 months, you can work on tummy time and help hamza reach for toys. If hamza isn't reaching much, try supporting his neck and shoulders by using a boppy pillow or similar. Tummy time is good for all babies and you can probably start working on Hamza's core. One way is to hold him gently in a sitting up position (only if he can hold his head up well) and bounce him on a yoga ball or your knee. Then gently lean him back or to the side and slowly and gently pull him back up when he engages his stomach muscles. Also when hamza is pushing up strong on his arms while on his tummy, you can work on him reaching for toys while on his tummy. And you can work on pivoting (slowly moving him bit by bit in a 360 degree direction one way and then the other). Most everything you do, you will want to do for each side and each direction. The book Gross Motor Skills for Children with Down Syndrome is highly recommended and will be very helpful I think for you. Anyway, good luck with everything! If you need anything or have questions, feel free to post back or share your email. Also, there are some yahoo groups you can join and you can post questions on there as well. Good luck!

    • I am sorry they your little son they is not feeling very good. I am pray they your and husband and baby life turn of around to a better place

    • I have a young lady who was born with Downs Syndrome 23 years ago and she is a pleasure, best wishes to you and Nothing xx

  • BEAUTIFUL... my niece Scarlett will be 2 in june, she's the sweetest, goofiest, most adorable little angel I've ever met. I wouldn't change a thing about her. She's had heart complications, an had open heart surgery at 7 months, but is currently doing extremely well, as I hope she will be for years to come. Thank you for sharing. Your baby boy is beautiful.

  • Hi!  I have a 9 year old son with DS, which I knew he had prior to his arrival...mainly because I was almost 42 when I had him.  Prior to my becoming pregnant, I was relatively unaware about many aspects of DS.  One fact that surprised me is that  80
    % of all DS births occur to women who are under the age of 35...the percentage of births to older women is much smaller, which makes it a higher likelihood within that total number. 

    What has been my biggest blessing is that I had my child at a point in history when I had access to numerous resources created by positive parents and organizations.  It took time to get to that point and every story helps.  Yes, in some ways my story was similar...I just made myself go through it much sooner.  When I was 6 months along, I met with a mom (normal 7 yr old, baby twins, normal girl and boy with DS) who advised me to not read too much...that people would be there to help me to just deal with whatever comes up and to remember that it's a baby just like any other.

    I know kids with DS exhibit a wide range of possible challenges...but people actually have more of an idea what to expect when compared to what the supposedly normal part of the population can throw at society.  Naturally  there are parents who will tend to have high hopes for their normal kids...and those that don't, or can't due to financial issues, or are indifferent.  Many people feel hindered or worthless without any obvious defects.  Having my son has given me food for thought about matters beyond his condition.

    It is important to form some connections and look at what people are doing within their communities and what else may be needed.  People who have special circumstances in life have more of an desire for a solution that will help others in a similar situation...be it a single parent, dealing with an elderly and/or disabled family member or friend, surviving on a low income, finding safe childcare...issues I have personally experienced that make me feel limited and on my own.

    You are way ahead of the game if you have an intact relationship, the child was planned for, created within a loving marriage and you have extended family to help.  I had my son in far less ideal circumstances yet found many people who affirmed his worth when others closer to me have been a bit negative.  However, those who have their act together and/or have a living situation that suits them tend to not associate with or think of ways to help anyone who doesn't...with or without a special needs child. 

    I've found that most day cares only want your kid if the child is within the normal milestones (such as potty trained), the school system for special needs may not offer a full day or transportation, jobs might not be available and there are waiting lists for child care funding even if you are not already on a list to get your kid into a day care.  If you find some place, then you are wondering how well your kid is being cared for while with someone else.  I had to also think of the safety of the other children because my son could throw larger objects...another issue not exclusive to a kid like him.

    I know this is a long post and I will stop shortly. I know great strides have been made in what the disabled are offered yet there is so much more to attain.  What I hope to do soon is share a vision for what I think are possible alternatives to the challenges I have encountered...perhaps on this blog and elsewhere...and get some feedback and/or inspiration from what others are doing...and share what I have discovered, like a place called Clayworks(@dsgp:twitter.org)...located in on Main Street McPherson, KS.

    Clayworks is just one example of a positive solution in action.  I look at how the world is set up and think that people could do more to carve out a niche that can serve many needs and put the emphasis on showing how we can help ourselves because we are helping others at the same time.

    • I really enjoyed reading your story of Noah's birth and the raw emotion you shared. My friemd went through your experience of not knowing a head of time and I remember not knowing what to say to comfort her I think 13 yrs ago now. She has raised a fine young man and she is so dedicated right from the beginning.

      The post Im responding to is Patrica Pender she was talking about day care...from the moment I saw this website my heart melted and raced at the same time because I have been going around in my head about doing home daycare because I do need to make a little extra income and I want to stay at home and with the blessing of God's GIFT of my grandson this past December from my 17 yr old daughter soon to 18 and engaged now to the father, my heart has been tugging at child care. But not just any child and I cant tell you why but I have been desiring watching a baby or young one with down syndrome for a parent who will have no choice but to go back to work. I worked years ago with a special horse riding program volunteered with handicap children and some children had Down syndrome. What a fun it was going to Special Olympics. I may even have to take some state required classes. I'm not sure yet. I'm really not sure how I would go about accomplishing my goal. Its just something thats been tugging at my heart. I have been working with children on Sundays at church and Parents Day Out subbing when they need help also. Do you think there is a need?

      • My little Maurice, is D/S and is 10yrs old, Nothing matters, he is my son, and his brothers & sisters love him, cause he is their brother.

    • One thing I would ask you not to do is call ur other children "normal" and ur son with DS not normal, use "special" instead cuz I always hated when people said that about my son. I never wanted him to think he wasn't "normal".

  • thank you for sharing this it made me cry n mad at the staff for assuming that you would need depression meds cause you got some news that wasnt expected. this was a birth like you said not a funeral . why didnt someone come in and tell you what was going on that they were waiting on your dr to get there . instead of leaving you hanging that would make me scared soemthing happened . i hate that word sorry why be sorry there is a sweet little baby boy who needs love form his mommy n daddy no matter what . he didnt choose to be here . im so happy that you n abbie have shard your story with us and ihope it helps others who might be in this place one day toshow them that ds kids love n need love just liek all other kids n people , noah is a very sweet lilman whether he has ds or not god knew what he was doing when he created noah and he knew what he was doing when he gave noah to you n abbie to raise. he does nothign that he dont think we cant handle and i think he knew you two would handle this and have a great life .thank you for sharing this storywith us n give sweet noah a hug from me n ryan.

  • Your story of your commitment to each other (before AND after Noah's birth) is so inspiring... My own story is with a prenatal diagnosis via amnio that I still feel I was coerced into getting by the doctor and the genetic counselor once they saw the markers for DS. At that point I had no idea people terminated pregnancies based on this. I was stunned later to find that they wanted me to get an amnio to find out "in time". I was appalled, and ashamed I never realized what they were doing. I knew all I needed to know - heart defect, strong marker for DS. That was all through the ultrasound and if they didn't feed off my fear, I would not have gotten an amnio. Suffice to say the 2nd visit with the genetic counselor I let her know I felt I was better off counseling myself. I could really relate to the feelings of this must be what is "typical" as a first time pregnant woman. So, after week 19 we continued the pregnancy with the knowledge we had a girl (the hard part - I was raised with 5 brothers!) and that she had a heart defect and DS. I researched my tooshie off and I carried husband, friends and family with positivity. My precious Teagan was born 1/4/04 and is now a pint size 8 year old. 22 months later her diva sister was born. Just super girls.

    Your site is famous in the DS community, but I just arrived. Thanks for what you are doing - I say it all the time - it all in the PR. Inclusion is not school based necessarily, it is community. The more the real world is a part of our kids lives, the more kids with DS will go on to be born. We need to change how the medical community approaches this. Your first hours with your son could certainly have been handled better by medical staff. Yes, there is mourning for most of us, but it passes remarkably fast with our long awaited babies in our arms. Best to you, your beautiful wife and to Noah.

  • i LOVE this story! your son is beautiful :) he reminds me so much of my son, gauge. when he was born the news of him having down syndrome was a complete shock to me also and i had no clue until he was born, but as soon as i saw him i fell in love & i continue to fall in love every single day :) God bless!

  • I love your story and I love your beatiful son ....your story give me a chance to think more about the peaple who has down syndrome...

  • You guys are a beautiful family and this story is remarkable.  I am looking to inspire a friend who was just told about their daughter and all I wanna say is thank you.

  • Thank you so much for being so open in sharing your first days with 

    Noah. We just had a baby boy 3 weeks ago born with Down. It was quite a shock to us. He had no idea. Did not even consider the possibility. This is our 3rd child. He was born at home. The first thing Andrey Simon did when I saw him - open his titled eyes and stuck his tongue out. My heart broke. My husband and I went through a lot of same emotions as you did. Now, 3 weeks later, my heart is stolen by this amazing little guy. God is good!  Your blog been very encouraging to me. Love your attitude!