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.
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
Thanks so much for the kind words! Where are you guys from? Also are you on our facebook page? (http://facebook.com/noahsdadcom/) we enjoy seeing photos, so feel free to post a photo of Austin to the page when you get a chance. 🙂
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
Oops. meant my own blog (I sound like a pirate lol!)
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
Dear Brother,
This is Rubel Taha Father Please send me some tips my baby down syndrome and i accept my baby happily please send me
my mail address is rafiqulislam3600@gmail.com, My cell no: 01754393804
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!
It’s so kind of you to offer Ham za ‘ s mom such helpful information.
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
Ok Pearson
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.
The world is a better place with you 3 in it…Many Blessings!!
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…
Thanks for the kind words. Do you have any children?
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.
Thanks for the kind word. How did it go with your friends? How is their daughter?
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!
I know how it feels to receive “sympathy” when there is nothing wrong. Our 3.5 year old son is speech delayed. He tests @ about 1-2 years.When strangers in public try to talk to him and can’t get a response that they understand, they will look confused. So I just say something like,”He is speech delayed. He understands you, but he has a hard time expressing himself. And then, “say hello and wave, son!” Immediately the oh-poor-you looks come and the tone of the conversation changes. Each time I think to myself, “don’t pity us, our child is perfect.” And he is perfect-in our eyes. He is our dear, sweet, precious son. We wouldn’t change a thing about him. He is exactly who God chose for us. And we could not be more fortunate. Just as Noah is who God chose for you. He is perfect. You (and he) could not be more fortunate. May God bless you & keep you.
Hi Lisa,
as a mom of 4-month-old baby with that extra chromosome, i want to copy and paste your sentences about how people react or fail to react when they hear the “news” … “oh-poor-you looks” ….
And Noah & family,
yes i read in tears, just washed my face and came back to write this comment:) Our experience was a little different, but feelings are similar.
It takes a while but when you realize “He is exactly who God chose for us.” as Lisa said , all is well, all is happy
Beautiful!
I love your strength and courage!!I have 5 children, all healthy and none with downs. But I know without a doubt I would love them no matter what!!Thank you for sharing your amazing story!!God Bless!
Great story! Took be back to the birth of my son almost 16 years ago.
I can not wait to start receiving your daily emails. Noah is the cutest baby and has an amazing life ahead of him. Thank you for sharing your journey with us.
He really is one of the most beautiful newborns I have ever seen!!!! May your inspiring story bring hope joy and love to parents everywhere!
We are waiting on test results that our 9 month old twins may have mosiac downs syndrome thank you for your story
What a beautiful witness! Thank you so much!
I cried and cried when reading your story. We just had a baby daughter…she was born low weight but other than that fine with everything else. Your story is very positive and encouraging to all of us. Every baby is the most beautiful angel in their parents’ eyes, and they do bring sunshine and magic to our life! Wish Noah and your family the best!
Thanks so much, and congratulations on the birth of your child! 🙂
Your story is heartwarming. Thank you for sharing your lives & love for your child with us. I had two cousins who were a bit older than I, both had Downs Syndrome. They were both raised at home just like their siblings. They were not treated any differently than the other children in the household. Both were blessed with incredible loving families. Their family physicans had advised that both children be raised in an institution. Both families rejected that advice. The education system did treat them somewhat differently though. It was 60 to 70 years ago; I just turned 50 this year, wow time flys by. My first job as a freshman in college was working with children that had physical & developmental delays. These children were wards of the state of NY. I met such beautiful, loving, and caring people at that job. Children who had so much love to offer, and the staff who tenderly cared for them. So many of the children had be given up at birth by parents that were so overwhelmed at the thought of how to deal with the fact that their child was different, without any understanding of the joy these children could bring into thier lives if only given the chance. Thank you so much for sharing your joy and love, and letting the world know that Downs Syndrome is ok.
It is also so important that the medical profession as a whole starts to look & think differently about special needs children.
There are so many children, who have so much love to offer, waiting for parents with the courage to love them. Adoption of a child with Downs Syndrome, or any of many special needs children is a blessing to a child & the family who takes them into their hearts & home.
From the heart, Grace
This is the 2nd time I am reading this post again.. your sharing really touched my heart and tears filled my eyes everytime I read it.. It felt so close to how my husband and I felt, when we knew our little Shannon (now 4 months old) was diagnosed with Down Syndrome… My little Shannon is an adorable baby girl 🙂 and as parents, we are very, very, very proud of her. I love reading your blog (picking up some tips on how to train my little girl with DS).. it is inspiring, and Noah is AMAZING..! Down Syndrome is OK !! Cheers !
Thanks so much for your kind word! How is your daughter doing? Are you guys on our Facebook page? If so, be sure to post a picture. We all enjoy seeing photos. 🙂
My daughter is progressing well, thank you 🙂 She is undergoing physical therapy session once a month in our local community hospital, so we are actually we doing physical therapy session at home.. (by ourselves, actually)… it’s nice to look at your daily one minute video on the physical therapy session to get more ideas on training her.. we also have the recommended book that you mentioned, which is a good book to train her on gross motor skills development. Yes I am on your facebook page!
Hi, your story was amazing and made me tear up like crazy… U guys are just awesome parents and have a super awesome baby – Noah is a very lucky little boy to have such fantastic parents – May the Lord Bless Ur family a million fold.
Do u recollect what was Noah’s NT measurement like in the 12th week scan? I am pregnant and in my 17th week and was wondering whether the NT measurement showed any likelihood of DS? Love U both and Noah and a Big God Bless – Hoping to hear from you soon!
We did not have an US at that time, we had one at 18-19 weeks and at that time there was no concerns or markers seen for down syndrome. We refused the blood screening. Increased nuchal translucency is a marker for Down syndrome though, but not a guarantee of anything 🙂 congrats on your baby!! Were there concerns with your baby on the US?
My prenatal test came back postive for DS at 18 weeks.I had an ultrasound with a perinatologist, and they suggested I have an amnio. I declined it, because I didn’t want to have a miscarriage. I was in the military, and the Dr’s told me I could go to San Francisco for an abortion, because amnio was not 100%, and they couldn’t “be sure” until he was born. I was sure-sure I had been an infertility patient who was now pregnant, and sure I was going to have a baby boy. He’s going to be 15 in a month, and was born without DS. It never occurred to me that anyone would be “double checking”once he was born, until I just read this story, and read that they didn’t bring your son to you right away. They kept my son for approximately 3 hours, and I’ve always assumed that was normal.I know the nurses were commenting on his cone head, because my parent’s mention it all the time. Kind of chaps my hide to think they might have been doing tests on him, and I think I’m going to go pull his inpatient record right now to check!
Thank You for sharing:) My son is 5 and has Down Syndrome, I am a single mother, I will never forget the night he was born, and how after he came out of me the room went silent… I asked the nurses several times if he was ok and no one answered me…Obviously I found out later why, and like you said it’s a birth not a funeral, they could have said “yes hes beautiful” cause he sure was!…I had a similar experience of you guys with the initial shock and confusion, but the second I held him and looked in his eyes ( and he opened his eyes and looked directly at me) I knew we were going to be just fine… He has recently also been diagnosed with autism, and we have good days and bad days, but he is such an amazing child and he is worth the joy and the struggle…I will fight for him every step of the way and I am looking forward to all the progress that I know in my heart he will make! It always feels good to read about the experiences of others living the same adventure:)
I want to thank you for writing, my nephew was born with Down Syndrome. I live in the UK and my sister and her husband live in Australia. I spent weeks after she told me his diagnosis trying to empathise, find words for what they must have experienced during that time. A shock, a complete “u-turn”, all those uncomfortable feelings mixed up with joy and wonder, you expressed it so well and I feel conforted to know that in some part I empathised well (although i dont know how seeing as it wasnt me and I ws 12,000 miles away!)
Oliver is 10 months old and we havent met yet, they are coming to the UK in 4 months time and I simply cant wait.
I just wanted to say thank you for posting this. Its important to me that people understand that there is nothing wrong with having down syndrome. Im 16 and have a 7 year old brother with DS. He honestly is one of the greatest people i know:) Thanks again for sharing your story<3
Wow. Thanks for sharing. I have a new baby brother, Jasper, who has down syndrome. His now 1.5hrs old. A beautiful little boy. My two older brothers and I are the happiest siblings. He completes our family.
Just a beautiful story, thank you so much for sharing! Noah was meant to be your baby. You are wonderful parents, and I am so happy that you have Noah and that he has you. Thank you for teaching me about your love for him 🙂
Your story is a beautiful one, of the love we all have for our children and the day they are born. My daughter and son in law, who also live in Dallas have just found out at 20 weeks, their son will be born late August and will be a baby with Down Syndrome. They have decided that he will be perfect, just different than what they were expecting. They and all his extended family are excited for his debut in just a few months. We are nervous, of course, but none the less know he will be a blessing. Thank you for being so open and honest. We found you, just when we needed you.
I work with special needs children’s at Church. The class is called explores.
They’re truly a Gift from God!!
Noah is a cutie.
I love reading all about Noah! He is so beautiful.
I have been in the field of disabilities almost all of my adult life. I am now a Vocational Evaluator for high school students with disabilities. I have always had a special place in my heart for children with DS. When my daughter was young, I gently taught her to respect all individuals, especially this with disabilities. One day she came to me and said, “i hope you never have a baby with Down’s Syndrome!” I was shocked that she would say something like that! Didn’t I teach her well enough? When I asked her why she said that, she answered, “Because you would love it more than me!” She is wonderful and sensitive to all human beings, even those without a disability! 🙂
A Special Mother is Born
A Special Mother is Born (my story, one of 34 such stories in my book “A Special Mother is Born” available on Amazon.
by Leticia Velasquez
“God would
never send us a special child,” I mused, caressing my pregnant belly, “our
marriage isn’t strong enough.” I was deliriously happy to be pregnant at
39, for three of my five pregnancies had ended in miscarriage, and my younger
daughter, Isabella, was an independent four year old. Last summer, I had
returned from a homeschool conference with an aching heart, longing for a
translucent-skinned newborn nuzzling my neck.
When my
pregnancy lasted past my danger zone, I was ecstatic, and refused the triple
screen blood test. “There’s nothing you can tell me that will make me end
my baby’s life,” I told my doctor, putting the subject of prenatal diagnosis to
rest. Or so I thought. Five months along, I was attending Sunday Mass,
absent-mindedly watching the
parishioners with Down syndrome from a local group home
when, from out of the blue, I
heard an internal voice. “You’re going to have a
child with Down syndrome,” the voice
said.
Astounded,
I tried to dismiss it as a hormonal fixation, until, in line for Communion, the
voice spoke again. “I want you to accept this child as a gift from My
Hand, when you receive Me.”
Now I knew
there was no escape. Jesus had a call for my life. How would I respond?
I choked, “Yes, Lord, as long as you bring my husband along for the
ride.” I received His Body in tears.
My
husband, Francisco, was floored, thinking that I had finally gone over the
edge. I also began to doubt the message, since there had been so many
normal sonograms. “And besides, Lord, I’ve seen these mothers of special
children. They’re saints. You could NEVER compare my impetuous
personality with theirs.” That, I decided, was the clincher. God
gave special children to saintly women. I was safe.
Never tell God what He is capable of doing. During
the remaining months, I struggled with self-pity, and even, for one instant,
regretted my pregnancy. Two days after the incident at Mass, Fr. Frank
Pavone’s EWTN Show “Defending Life” featured a pair of sisters, the younger of
whom had Down syndrome. Her older sister described her as a blessing for the
family: She worked all day, attended daily Mass, prayed the Rosary, and
whenever there was a family conflict, she was the one who brought about a
reconciliation. She ended the show singing a love song she had composed for
Jesus. I saw this as a confirmation that I had indeed heard from Jesus at Mass,
and that His grace was molding my heart.
The time came for little Christina Maria’s arrival.
At her birth, the delivery room fell deathly silent. Alarmed, I glanced
over at the pink, wriggling baby in the isolette, and asked “What’s the
problem?” The doctor didn’t respond. Francisco tried to tell me in
Spanish that Christina was a “mongolita” (Spanish for Mongoloid), but I didn’t
understand. So, on the way to my room, the nurses circled my gurney and
said, “We regret to tell you that this child has symptoms consistent with Down
syndrome.”
I was ready with my response. “This child will never take
drugs, go Goth, or shoot up a
schoolroom. She’ll learn the Faith and keep it her
whole life. She’s my best chance at
getting a daughter to Heaven, and I consider her a special
blessing from God.” My
answer came from a book, Pregnancy Diary, by Mary
Arnold, which I had read regularly for inspiration.
But words are cheap. What cost me dearly was watching
the other newborns in the nursery and comparing Christina’s weakness to their
vitality. I resented the happy chatter of the other Moms in the ward.
I was haunted by dark thoughts, and self-pity took hold of me.
Just then, the phone calls began. My mother and
homeschooling friends had summoned support from around the country, and I was
encircled in love. I spoke with a mother from my parish who answered many
of my anxious questions and told me what it was like to raise her youngest
daughter with Down syndrome. Another friend, the mother of 11, sent an
Elizabeth Ministry package for special babies, with a CD and book set titled,
Sometimes Miracles Hide, Stirring Letters from Those Who Discovered God’s
Blessings in a Special Child, by Bruce Carroll. That package was a
constant companion, reminding me that regardless of how inadequate I felt, God
had, indeed, chosen me to mother Christina, and that she would be my means of
attaining holiness down the road. God’s favorite road, the Via Dolorosa.
On Mother’s Day, the day of Christina’s Baptism, we shared
that song with the over 100 guests who crowded the church. My heart
swelled with gratitude to God for choosing my family to raise
Christina. And when her godmother asked what she should pray for, I didn’t
ask for a cure from Down syndrome. I was beginning to understand that her
“condition” was a blessing, not a curse. Perhaps, as Fr. McCartney had said,
Christina
pities us for not having the purity of heart to see what
she sees.
Francisco still had to journey towards accepting
Christina’s diagnosis. When she was first born, he had difficulty holding her
and said she looked like “an alien.” He even considered leaving our family over
the shame he felt at having a handicapped daughter. He asked if we could avoid
having mail with the words “Down syndrome” arrive at the house. I was
devastated. Thankfully, two men—my father and a friend from a prayer group—took
it upon themselves to approach Francisco quietly and remind him that he, too,
had been chosen by Our Lord to raise Christina. He began to hold her, and
little by little, she wound her way into his heart. The next step involved
taking Christina out in public. I worked on Saturdays, leaving him home with
three girls, and soon, he began to take them on walks and bike rides to the
beach. We attended a Spanish language parent support group at a local church,
and the example of macho Latino dads publicly sporting their children with Down
syndrome on their shoulders, worked to overcome the sense of shame and
hopelessness he learned as a child in Latin America.
Now, Christina is the apple of his eye, and they are inseparable. I watch and
smile as, hand in hand, they pick corn in the garden, or examine a dragonfly in
the river, then practice skipping stones.
I gave birth to my son Colin on Sept 13/11…he was born with DS. He had a very complicated life. He also had CF. A first for the hospital we were at. The two genetic issues were too much for my boy who was plagued with intestinal issues. To make a long story short, 9 surgeries, countless blood transfusions and never ending infections, Colin passed away on Jan 28/12 with his family at his side. I was directed to your site by a friend and have found it to help me on tough days. Seeing your sweet little man lifts my spirits…even if only for a few minutes. Thank you for sharing him….you really are helping people in more ways than you know. Tiffany Wilson
This is such a beautiful, heartfelt story of unconditional love. Thanks for sharing.
Thank you very much.
I have read this story over and over it is such a wonderful story, Noah is truly a blessing as is my great grandson Hunter. Thank you for this loving story , :Happy time!:)
Thanks so much for the kind words. You are such a great, loving, grandmother. I’m glad our paths crossed. 🙂
Hi my name is Meagan and I have a 9 month old beautiful baby boy named Colson. Prior to his birth I did not know he was going to have down syndrome. The doctor came in about an hour after he was born and told us she believed he had down syndrome. I was devastated. My husband was ok with it from the beginning. While waiting 48 hours to find out the blood results, I realized it did not matter what the results were. Back in May 2010, I was 38 weeks pregnant with my second daughter, Sarah Grace, and I lost her. I went to the hospital one morning thinking I was in labor and found out she had no heartbeat. That was the worst day of my life. So when Colson arrived I was blessed to have finally have my baby. While waiting for the results, I was scared. I was scared mainly for what the future would hold. But when I received the call letting me know had ds, I was just grateful he was here and healthy. He has no health problems and his doctor and therapists say he is doing great. He is the sweetest baby and my husband and I spoil him crazy. My daughter and stepdaughter are great with him and he loves them so much. I do not know what the future holds but Colson has changed my life in such a wonderful way and I am so blessed to have him:)
Wow! What a great story. It is like I am in the delivery room with your family. Thank God you are a communicator and we live in a day where your story, and all of us families with extra special little ones, can be shared with so many. May God continue to bless your family.
What a wonderful story, My name is Lisa I live in Essex, United Kingdom with my husband and 4 children, I am 17 weeks pregnant and found out via a cvs at 12 weeks that our daughter has Down Syndrome, at first it hit us like a ton of bricks and everyone around us was telling us how sorry they were including the professionals, and giving us all the options available to us. (Deep down the last thing I was thinking of was a termination, we had already suffered 3 miscarriages in the previous year and unless the condition the baby had was life threatening I wasn’t even going to entertain the thought). After the initial shock I made it my mission to find out all that I could about trisomy 21 in order to prepare myself and my family for what was to come and so far, thanks to your website and the Down Syndrome Society website I’m feeling really positive, excited and can’t wait to meet my new baby daughter.
The older children have been told of the condition and as far as they are concerned she is going to be there little baby sister and nobody is going to change that.
I’ve still got a long way to go before the birth and my calendar is full of ultrasound, consultant and midwife appointments, in a way it’s preparing us for the extra appointments little one is going to have when she’s born, I tell everyone when they ask me about the baby that she has Down Syndrome as I refuse to see it as a negative but a positive. Things happen in this life for a reason and I think the reason this has happened is to make mine and my family’s life so much more rewarding and richer. Lisa xx
What a truly inspirational story, it really touched me. I live in a part of the world where the expected course of action when you find out you’re carrying a child with DS is to terminate the pregnancy. This has always struck me as incredibly sad (and, to be honest, incredibly odd). What it is about children with DS that make their parents chose not to give birth to them, I will never understand. The next time I discuss the issue with anyone, I will make sure to refer to this account of unconditional parental love. Thank you for sharing it. God bless.
I just wanted to say that you said everything that I felt to.We also have a son that has Down Syndrome.He is 5years old and he has a sister that is fine and she is 11 years old and she has always felt that her little brother was hers. We didn’t find out until he was 3weeks old that he had downs.It was also heart breaking for us cause we didn’t know.I just wanted to have a little boy for my husband so he could teach it football and wrestleing. Which now Dalton wont be able to do any contact sports because he has Atlantoaxial Instability it has to do with you neck ,the axis in his neck allow it to move fuerther than ours.But he is te light of our lives and we would never want himn any other way.I belive god gave him to us for a reason and he would never give us anything that he thought we could not handle. So thank you for letting us get to hnow your son .God Bless you both and Noaha. Stephanie
Hola Soy Mama de un bebe son SD, el tiene 3 años de edad, se llama Jesús, es un hermoso, su historia me conmovió no puede evitar llorar, creo que los sentimientos fueron los mismo, yo me puse triste, mi esposo no el acepto el diagnostico en cuanto lo supo, hoy en día Jesús en un niño super amado y aceptado por toda la familia y la guardería. a el le encanta bailar, cantar, jugar a la pelota, colorear, clasifica colores, reconoce animales. ahí vamos trabajando fuerte con el.
Gracias por compartir su historia, tienen un bebe hermoso, esos ojos de OMG! 🙂
Thank you thank you Thank you for posting this beautiful story about Noah! My husband and I had a very similar experience when our 2nd child, our son Dylan, was born 8 years ago with a very serious congenital heart defect that we knew nothing about until he almost died at birth. At 5 days old he underwent a 9 hour open heart surgery to repair it. We know exactly how you felt; the shock, the pain, the fear, and finally the acceptance and the joy of having a beautiful baby boy. We see a cardiologist once a year and there are a few minor problems we need to monitor but overall he is a healthy, loving kid and we’ve decided that God gives us (you and Abbie and all of the other parents who have posted to your story) these special children because He knows that we will give them the unconditional love they deserve and be able to see to their special needs as well. Bless all of you and your children!
Bless you Rick and Abbie for embracing this beautiful gift that God has entrusted to you, your beautiful son Noah. Thank you for sharing your heart warming story with us. I pray for happiness for your sweet little family, may you always know joy!
Thank you so much for your kind words.
Do you have any children?
I loved reading your story, although mine was a bit different (still being stitched up when a Dr came over and stated “eyes, toes, ear” HU? Then we had our little Liam from then on out, we never felt sad but I love your statement of “it’s not a funeral” everyone does act so negative maybe just naive I know I was but not for one moment were we sad, our only fear has always been “I hope we can live up to Liam’s expectations”.
Liam just turned 3 on 4/9/12 he’s the best gift to a family with 4 other kids who also think he’s the most adorable boy:) Keep your blogging, I love that you’re doing this for all the people out there with DS and those who think the know what it is, they tend to be very wrong.
I don’t know why it took me so long to find your blog, but better late than never. This is a wonderful story, though my heart ached for you and Abbie going through all those hours of not being able to bond with your beautiful baby – that seems like a clumsy call by the professionals involved.
But what an inspiring story! Whe our 8th child was born with Down syndrome 20 years ago, I knew when I saw him and I just remember being overcome by joy, knowing that we were at the beginning of an incredible journey. That’s not because of my but somehow God had prepared my heart – we had babysat for a little girl with Down syndrome from our church (her father had left her mom when she was born).
Jonny’s sister was born 54 weeks later, probably the best thing that could have happened for him as they grew up like twins. Then we adopted a baby with Down syndrome, and twice since then people have asked us to adopt, so we have four young men with Down syndrome now – 20, 16, 15 and 12.
Which is why I especially want to thank you for telling your story. Anything that shows the world that Down syndrome is not a curse or something to be afraid of – anything that saves the lives of these children – helps all of us! So bless you!
btw, Jonny was Homecoming King in his senior year – a phenomenon that is very common across our big-hearted country. Lots of love to go around when our kids are thrown into the mix!
I am inspired about your adoptions. You are sure blessed to have such a wonderfully large family. I am an adoptive mom of a beautiful 2.5 year old daughter, and we’ve been approached to adopt a 6 month old baby boy with DS. God is giving us peace, but we are moving forward – gaining more information – with fear and trembling. Thank you for this encouraging post.
I got the same response from (my) Noah’s doctors…that Down Syndrome wasn’t ok. I was told everything he WOULDN’T do (which of course he had accomplished). He’s 7 and the greatest thing that ever happened to me. I feel so incredibly blessed to be his mom 🙂
Thank you so much for sharing your story. Noah’s story. Three months ago my husband and I had the most gorgeous baby boy. Our story is just like yours. I sat here and cried while reading this because I know exactly how you felt. We are so excited to be his parents. He is a rock star and we can’t wait to see what God has in store for him.
I absolutely loved your detailed story of Noah’s entrance into this world. I am a nurse and I am back in school doing a team project on Down Syndrome in order to develop a brochure to share information about children born with Down Syndrome. Thank you; please kiss Noah for me:-)
I know exactly what you both went through. My story was a little different. However my daughter was diagnosed with a rare chromosome disorder called monosomy 21 mosaism. This story had me in tears… Only because I felt the same way. Your son is sooo precious. Take care. Nicole
Your story is beautiful, my sister and I are very close but your story gave me a true inside of what she went through with her delivery. my nephew Christian galvan Coover was born with down syndrome nov 14 2011 and passed away jan 11 2012 he was loved dearly by our family and missed dearly. I love how your goal is to inform and help people going through similar situations. my sister and I now volunteer at ds association functions and camps.
Thanks for your wonderful sharing. Noah is very smart and really a wonderful gift from God. He will be the light in this world and bring blessings to others.
You guys are just amazing. What a lovely little boy you have, and what wonderful, loving, and genuine parents Noah has! Be blessed you three, I’ll be promoting your story to everyone I know.
x
hi, my name is karen mancillas and i have a 12 year old daughter with down syndrome. she is a hand full, i know god watches over her and loves her. she is a blessing, we can all learn so much from children like ours. its okay to be different and love unconditionaly.
Indeed! Where are you guys from?
Thank you for sharing Noah’s birth story. It is so very similar to the story of my son Van’s birth. We, like you, did not know about the Down Syndrome until he was born. We had the same thing happen where we weren’t able to hold him for such a long time after he was born. And yes, about people being somewhat negative… our Ob/gyn also told us “sorry” and didn’t want to give us any eye contact. (Maybe he felt it as a personal failure?) The hospital’s neonatologist even met with us before we checked out of the hospital to tell us that we didn’t have to take him home, that there were institutions we could put him in. When we immediately said NO he said that’s the answer thought we would give, but he was supposedly obligated to give us the option. Anyway, you described the mixed emotions so well… on the one hand you have some feelings of grief, and yet how can you feel anything but pure love and bliss when you hold your precious baby? My daughter was two at the time and was a little confused at all the crying at a time when she was so excited to have a baby brother. I told her about his Down Syndrome, just basically explaining that he may take longer than other kids to learn certain things. She looked at me a little concerned and said “will he be able to laugh and play with me?” I said, well yes. She asked “will he be able to hug and love me?” I said, well yes. And with that, she looked visibly relieved, said “oh good” and went back to being totally enthusiastic and joyful about her new baby brother. She taught ME so well that day. Van is 26 years old now, and there has not been ONE MOMENT that I did not believe that we are one of the luckiest, most blessed families. And what a BEAUTIFUL family you have too, he is an absolutely beautiful child! God has blessed you with this wonderful person, Noah, and it seems that Noah has also chosen some very special parents. Wow, I feel so incredibly touched by your story!
what a gorgeous boy you have and what wonderful parents he has! i have two boys (2 and 4) and they are so much fun — and so much work! they don’t have down syndrome but it wouldn’t matter if they did. all children — all people — are different and have challenges in areas of their personalities, their lives. noah is so cute — you both are very lucky. a great story you wrote! as a mom and a wife, i really enjoyed reading it. have fun with your boy! take care.
I love your story I’m so glad I came across it! I found out 1month ago, through amnio that my baby will have Downsyndrome. I’m still upset about it but how you guys are with Noah is so awesome. He is so loved! It really shows me to be strong, your accualy truly blessed God won’t give us more more then we can’t handle. Its so funny that i found this page because when i was younger i couldn’t wait to have a babyboy and name him Noah. Here I’m pregnant now and its a boy Im naming him Noah Then i came across this website i was like OMg LOL.
God bless (;
Congrats on your Noah!!! It is the best name. I know it is a struggle dealing with a diagnosis but we are here to support you!!! When are you due? Is his heart looking ok on ultrasound? Is this your first baby? I am assuming yes. Let us know if you have questions.
Hi I was 43 when had my 13year old daughter born with down syndrom and I decline the amnio test. when she was born I felt in love right away she was my third child and first girl you can imagine I was always looking for a girl. the doctor give me the news and I said Ok she then say Do you know what is Down Syndrom? and that I can go ahead and cry I said I now what down syndrom is but is the first time I see a baby. I see no disability nothing wrong with Isabella other that being a precious little girl . It was Friday and I was going to be released but she had to stay in the hospital for more test. I did not want to leave her so I asked if the test coul be done that same day so I can take her home with me so they called a child cardiologist from San jose Ca who was so kind to drive to Watsonville were we were he say she looked Ok and felt I was able to care for her better then the hospital staff I guest He was able to see my love for her . Since that day to present I have treated her no different then her brothers I have had high espectations and she has always surpass them I help my son run a Bed & Breakfast in Santa Cruz and can assure you she is my right hand if someone will run this place one day is Isabella . she is blessed with two older brothers and one younger brother who has tought her so much. one thing I recomend is give him your love as now and when you hold him in your arms transmit your love to him and feel proud do not be enbarresed if someone looks at him introduce him and mention how proud you are of your son educate those curious people . any how if you ever in this area I would love to meet your little Noah. May God give him health and love to succed in life. Maria
Your family and your story are nothing short of amazing and beautiful. Thank you for sharing with such raw honesty and emotion. The story of your ADORABLE son’s birth is quite similar to our son, Carter’s. He is almost 11 months old and we too learned he had Down Syndrome shortly after birth. I believe wihtout a doubt that we our the lucky ones… we have been given this special gift that allows us to see the world in a light that most cannot understand… It’s a beautiful view! Thank you for sharing your story and working toward world awareness that Down Syndrome is more than okay… its awesome! 🙂
When my son was born, me and my wife had no clue until the age of 2 we are parents to a special child as well. My son who is 4 now is in the spectrum. We love him so much, and I don’t find any disability in him like other claim, for me he will always remain the most loveable child in the universe, I too like you celebrate his birth and so blessed to have him in our lives. There is not a moment I stayed in self pity, rather so happy that god has given him to us and he is part of our life now. Your story is touching and I always get your facebook updates, thanks for sharing your life with us you have splendid in your writing style wish I could pour out my emotions in words and do justice to it like you do.
Thank you for sharing this beautiful story!!! The world is hungry to know how every person is a precious, precious child of God! Congratulations to you both!
What a joy!
My husband and I had been praying for a baby; trusting in God to provide us with a baby to love after a devastating miscarriage and several months of trying unsuccessfully to get pregnant. I will never forget that Wednesday morning in September when I took a pregnancy test. After my alarm went off, I went immediately to the restroom, got back into bed and prayed over the results with my Brian, my husband. After a very long two minutes, he went to the bathroom to read the results; his face aglow as he proclaimed the news of a baby on the way! Oh what joy! We held each other and cried, overwhelmed at the faithfulness of our Father to answer our prayers.
Over the next few weeks, we shared our incredible news with excited family and friends. Everyone celebrated the arrival of Baby Bell with us!
In December, I received a call from my doctor with the results of our quad screen. Usually I talk to his nurse; however, this time, it was him on the phone. He prefaced the results with an uncharacteristically muted tone, and I knew the results were not what we had prayed for. He skipped the usual small talk and asking about my family and dissing on Alabama football (he is an AVID Mississippi State fan); things we usually discuss at my appointments, and got straight to business. He began, “Often these results are not accurate; in fact, many times they offer a false positive. However, I want to tell you, according to your blood test, your child has a 1 in 6 chance of being born with Down Syndrome.” I have no idea what he said after that. The words resounded in my head. My whole being was consumed with this news. My husband was not home, so I sat in my dark, quiet home and cried. Cried for the unknown. Cried for my hopes and dreams for my baby. Cried for my baby girl or boy and the cruelty of the world towards people with special needs. Cried, and pleaded with God. Cried out in prayer, because that was all I could do.
We were referred to a specialist for a Comprehensive Level II ultrasound to check for physical markers of Down Syndrome. Our eyes were glued to the monitor as the specialist checked for a fold in the neck, absence of a nasal bone, length of femur, echogenic intracardiac focus (bright spot on the heart), among others. In the midst of those findings, we learned that our Baby Bell is a Baby BOY Bell! I have never seen my husband smile so proudly, as the doctor highlighted the very obvious male anatomy. “That’s my boy!” “That’s my boy!” exclaimed the delighted daddy to be. Of the major markers, our son had one present: an echogenic intracardiac focus. (This, we also learned is very common in babies born with and without Down Syndrome – not a very reliable marker). None of the others were found as they scanned our little boy’s body and watched him wriggle and squirm and suck his thumb for his mama and daddy to see. Oh how our hearts were filled with joy at the realization of our baby’s gender, perfection of his little body, and decreased chance of our son being born with Down Syndrome.
With those results, we threw out the possible diagnosis and chose instead to focus on the upcoming arrival of our baby boy. We had a blast pondering the best name to suit our little blessing; choosing William Baker: William, after my husband’s father, and Baker after my father – two men who have so positively influenced our lives. We sent puzzles with his name to friends and family members living out of town, inviting them to put the pieces together to figure out his oh-so-perfect name!
The rest of the pregnancy was filled with joy as we were showered with love and gifts to prepare for our little one’s arrival. We had frequent ultrasounds to monitor the spot on his heart; which suited us just fine! We loved watching our Baker Bell flourish into a beautiful baby on the monitor in the room we became so comfortable in. Then, to our surprise, on Friday morning, May 11, contractions began. Not the Braxton Hicks I had come to live with, real contractions! I denied the onset of labor, as I was only 36 weeks and 4 days. It wasn’t time! I hadn’t nested! I had left my desk at work in shambles! None of that mattered; God had planned for us to meet our baby boy on May 11.
It was a long day, it was a good day; second to saying “I do” to my husband, it was the best day! Labor progressed slowly, but at 11:30 that night, the doctor uttered the words we’d been anticipating, “Let’s have us a baby!” We called our family back in to pray together. We prayed for Dr. Chaney, who we have grown to love and regard as a part of our family. (A little side note: Dr. Chaney wasn’t even on call that Friday night; but had taken such an interest in our sweet baby boy, he proclaimed only weeks earlier that he would deliver him, no matter what, and he did.) We prayed for the nurses and for the health and safety of both our baby and me as we were approaching the final moments of pregnancy. We said our goodbyes, and gave hugs and kisses for the last time before becoming a family of three.
Our family walked out at 11:40, I started pushing at 11:45, and our Baker Bell arrived at 11:46. And what a sweet arrival it was! Love at first sight! My heart grew so full as we locked eyes and he was placed on my chest. Oh, he was beautiful, and he was ours. After some time as a family of three, the nurses took him away to meet the anxious grandparents, aunts, and uncles eagerly awaiting his arrival, and then to the nursery for some obligatory tests.
The next few hours were a blur. Nurses coming in and out to check my vital signs. Hushed whispers of suspicions of Down Syndrome. Family hovering, too excited to leave. Us exhausted after a long day of labor.
They kept Baker in the nursery for so long. He finally made his way back to us at four o’clock in the morning, to say a brief good bye before being taken to the NICU. When we saw him the next morning, he was just as beautiful as I remembered; his tiny body was covered in cords, tubes protruding from his nose and mouth. My heart ached to hold my baby boy. I celebrated my first Mother’s Day sitting by his side, stroking his sweet angel hands; unable to hold him or see his eyes because of the bili lights for severe jaundice. On that day, our suspicions were confirmed. We received the results of Baker’s chromosome analysis, showing that Baker had been born with Down Syndrome.
We shared the news of our baby boy’s diagnosis and comforted them with these words: “We celebrate his health, as many babies with Down Syndrome are born with serious health complications. Praise be to God that our baby’s heart and other major organs function beautifully.
While the results of this test were somewhat of a surprise to us, they don’t surprise our Heavenly Father. Just as He knows the number of hairs on our baby’s head, he knows the number of chromosomes in his body. He knows our baby boy, and He knows us. This is part of His perfect plan for our lives. Psalms 139:13-14 says, “For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” He is wonderfully made by our Father, who does not make mistakes. Brian and I were chosen, specially, to be Baker Bell’s mommy and daddy, and for that, we say, “Rejoice!” What an incredible honor for us to be chosen to love and care for this sweet baby boy.
Please don’t be sad for us, as we are not saddened by this at all. This is the child for whom we have prayed so diligently. 1 Samuel 1:27-8 “I prayed for this child, and the Lord has granted me what I asked of him. So now I give him to the Lord. For his whole life he will be given over to the Lord.” He needs not be labeled by a disability, rather, the only label he needs is, “ours.” We love our baby boy more than we could have ever imagined. He is strong. He is beautiful. He is loved.
I cannot wait for you to meet our little Baker Bell! He has stolen many a nurse’s heart all over this hospital. They all sneak into the NICU on their break for a glimpse of our little man. I warn you, it’s love at first sight! Unspeakable joy! His little expressions keep us snapping our camera and claiming, “That one’s my favorite,” only to have a new favorite in the next minute.”
After nine long days in the NICU, we are home now, and we are more smitten today than we were yesterday or the day before. He is our love! We are still working to alleviate his bilirubin levels, with frequent trips to the hospital for blood work and labs. No mommy should have to see her baby be pricked on and prodded to this extent.
We are human, and I will admit to moments of weakness; but the strength our God has given us overcomes. We are thankful for our gift, our precious blessing in the form of a bitty baby boy named Baker Bell. I am looking forward to learning and growing on this journey with him.
Our son has Down Syndrome and is 43 years old. He lives with 2 other guys in a staffed home.
He lived with us until he graduated from high school. I talk to Dean every day and he talks with me. Dean has changed me more than anything that has happened in my life. The possibilities are wonderful now for your son.
Thanks so much for the kind words, and for sharing this. You sound like an awesome mommy! 🙂
Where are you guys from?
We live in Pueblo, Colorado.
Thank you for sharing your story. It is so similar to ours. We were told by the NICU Dr on duty at the time that our Colton has DS. He was so matter of fact about it and somewhat apologetic. I’ve been feeling lately that there needs to be a change in how the medical community views the diagnosis of DS. While parents of DS kids do face more medical issues, more work in helping their kiddos develop, and other potential hardships, I don’t think we could love them any less. They are definitely worthy of celebration, not mourning.
And now we are part of the surprising journey discovering God’s hidden treasures! Sending our love and understanding- Our Bethany is 11 and the best gift we never knew we needed or wanted. While the physical/mental challenges are “sad” sometimes, it’ no different with any of our other 6 children- We all have challenges and limited abilitites- we just have to find the gifts God gave us and use those to shine our light! Children with downs syndrome seem to have a pretty bright light compared to most people I know! hugs!
I came across your website by accident and I am glad that I found it! What a wonderful story and I am so happy that you are doing this. I firmly believe that every child is born special regardless of genetic imperfections, and I never understood why someone is given the option to abort if there child has DS. My son was born at 29weeks spent 4 months in the NICU. He is very medically complicated, but he is th most loving, adorable, ornery kid I know. Even though our life is driven my doctor appts, therapy, and such… I wouldn’t changed it for anything.
Thank you for showing the positive side of having a special needs child. Thank you for giving us a voice and thank you for your optimism. Life is not guaranteed let alone easy, but God rewards us through our trials and tribulations.
Yours is an amazing story and I can honestly say I truly understand all the feelings you went through. Although my beautiful princess was diagnosed with Down Syndrome at 12 weeks my husband and I went through all the same emotions, fears and anxieties as you did. She is three months old now and have celebrated her since the day she was concieved with a minor bump in the road. Unfortunately she does have two major heart conditions but we we deal with the issues of those as they arise and look forward to her surgery being over in a couple of months. I will be following your story and laughing and crying right along with you.
i got to meet Noah at march for babies he hugged me after we took a picture i smiled as soon as i got home i squeezed my lil brother that kid made me realize God can do miricales that night i got saved and gave my life to the lord i want to pearsonally thank you guys for changing my life and especially little noah!!!!!!!!
I’m 35 weeks pregnant with a baby doctors suspect has downs. He has very short femur. He is my fifth child and I can’t wait to meet him. Already we have had a mixed response from family and friends, we like the positive ones best. I’ve found people who know someone with downs are positive it’s only ones who don’t know these people are special and like angels that make negative remarks. I’m scared in case my son is ill when he is born but excited about having a downs baby. God bless you and your family xx
Congrats on your baby!!! How lucky is he to have so many older siblings 🙂 you will definitely get mixed responses however once they meet our little man he will melt their hearts 🙂 hopefully he will do great once he is born 🙂
Hi i feel all in your story …what an amazing journey my son macauley is now 13 and downs syndrome hes the most amazing son ever hes my sunshine when it rains ….so full of smiles laughter and love …..lifes little pleasure and i wouldnt change him for a moment xx
well i have just read your beautiful story and i was in tears sad at firt then VERY HAPPY ones you have been blessed with a beautiful baby boy .
We were blesed with our Kate who we adopted 20 years ago and she has brought us so much happiness she is very sight inpaired and is very learning delayed but that doesnt bother her or us she trys her hardest and always seems to be smiling we love her to bits we wish you lots of happiness with your little Noah you are in for an amazing years ahead of you
l
love Pat Allen and Kate Ridings x x x
Hi there! My husband and I just found out in the last week that our baby girl, due in September, has Down syndrome. I am so happy to have stumbled across your blog while doing research. It is so comforting to hear parents who had some of the same feelings and concerns as we did (do). Thanks for being honest!
Congrats on your new addition!!! I don’t know what it is like to find out prenatally that your child has Down syndrome but I do know the diagnosis can make you have a lot of emotions both good and bad. We are here to encourage you and support you!! Your local group should be able to get you in contact with parents if you are interested in that. If you have questions let us know 🙂
I cried while reading your beautiful story. I remember feeling exactly the same feelings of excitement and joy when I found out I was pregnant and when he was born I loved him from the first minute I saw him. I knew that I would do absolutely anything in my power to keep him safe. Our story is so similar to yours except it took the nurses 2 days to suspect DS. When it was first mentioned it felt like the worst news ever. Those first few days were some of the darkest days of my life. I remember holding him and crying and wishing the diagnosis would just go away and that they made a mistake. But it didn’t go away and we decided one day to stop crying. We had a beautiful little boy who we loved with all our hearts. It didn’t change anything. Thankyou for sharing your beautiful story!! I loved reading it!
What an inspiring story. Thank you for sharing this. Our York just turned 21 and we could not ask God for a greater gift. He has thought us patience and he has a peacefulness around him that brings calm and tranquillity in the house.
Thank you for sharing your story. I am a single mother of a 15 month old baby boy with Trisomy 21. He was diagnosed at 19 weeks. At the time I was in what I thought was a loving relationship with a man I planned to be with forever. He had worked for the Special Olympics for 3 years and was extremely adamant that I discontinue the pregnancy. The doctors seemed to be trying to push me in that direction as well.
But as much as I felt sad, scared and anxious about having a baby with Down Syndrome (something I knew practically nothing about outside of Corky on Life Goes On) I knew terminating a pregnancy that far along was not an option. That was my baby and I already loved him.
After a few weeks, or months of ups and downs, highs and lows, there came a peace over me and I stopped thinking about the diagnosis, although his father didn’t. He pulled further and further away from me; stopped going to doctor visits and the like. I had pre-term labor twice and in both instances was scared to death of losing my baby. However, the doctors always made sure to “confirm” that my baby had Trisomy 21. I heard it at every visit. In every conversation. They talked to me about adoption. I have a now 16 year-old daughter. How would I ever explain to her that I gave away her brother because he wasn’t “normal?”
I was told horrible things..he would never live independently, I would have to tend to him forever, working would be hard, etc., etc. His own father even told me “you don’t want a baby with Down Syndrome.” It was a very miserable existence.
The morning my water broke was just as exciting as it was with my first child! I admit that I had convinced myself that the doctors were wrong and that my baby would be just fine. So, I happily went into Labor & Delivery to have my baby. I called his father several times…his paternal grandmother, everybody. He never showed up. I delivered my son in the company of my daughter, my mother and 2 of my 3 sisters.
As soon as Tristan was born, I knew the doctors were right. He very obviously had Down Syndrome. I cried. My daughter cried. My mother cried. We felt such sadness, even though I had no idea what it would all mean. He was crying when they first showed him to me..and when they laid him on my chest, he immediately stopped and was comforted. It was then, in that moment that it no longer mattered to me what his label was on paper. He was my baby. He was gorgeous. And he loved his mommy. And I loved him.
He also was born with a normal heart. He did stay in NICU for 8 days because of low blood sugar. Those were the hardest 8 days of my life. Having to leave him in the hospital overnight, but I spent all of my days there with him until he came home. His father came to visit 3 times. He was very angry with me that I chose to have this baby. We haven’t seen him since.
While I was pregnant, I would read testimonials of other parents of children with Down Syndrome who always talked about how loving their children were, and I remember thinking they were just trying to comfort themselves. Shame on me. I now understand EXACTLY why they say that.
Tristan loves hugging and kissing, and laughing…he’s funny, silly and a go-getter! We have our share of difficulties, or I should say, he does. I dare not claim his difficulties for myself, nor his triumphs..and he’s had many! But I wouldn’t change my life for a second. I would make the same decision all over again. He has changed my life forever, but through him I am learning patience, humility and courage. I adore my baby…both of them!
It was so wonderful to happen upon this site and all the beautiful stories. So funny how God gives us the exact thing we believe we cannot handle, but shows us we can. 12 years ago we were told that they believed our son Nicholas would be born with DS. The numerous people here in the Santa Cruz and Bay Area is an inspiration. From the numerous people I have met born with DS, I see all the things they CAN do….not what they can’t, and am always amazed at what they teach me. We are blessed with a wonderful family that was so matter-of-fact about his DS, but full of joy with a new baby boy.
Thank you for the beautiful story of Noah. We just had an unexpected Down’s grandbaby yesterday and it’s so funny how a mourning process for the baby we expected to have had to happen while feeling joyful that the grandbaby was FINALLY here and healthy. A very strange paradigm.
The doctors are still saying they “think” instead of he “is” so I don’t think the parents have accepted it yet, not until the tests come back.
Thank you for sharing your story. I cried through the entire touching story. It brought back memories of the day my granddaughter, Abby was born. Our story is very similar to yours. Amy is my only child. When she announced she was pregnant, at 26, our families were estatic! Stuart, her fiancee was an only child also, so we were so excited to add to our family. We discovered Abby’s sex through an ultrasound, and spent the entire pregnancy preparing for a precious baby girl. My mom, dad, stepdad, two brothers, nephew, and Stuart’s mom and her partner were as excited as Amy and Stuart. Amy started to loose ambiotic fluid, so she was scheduled to have labor induced on December 14th, her 26th birthday. The entire brood was at the hospital at 5:30 am, We took turns in the labor room holding Amy’s hand, encouraging her, waiting. After 6 hours, Abby’s neck became entangled in the umbilical cord and they performed an emergency C-Section. Stuart went in with Amy & all seemed to go well – he sent us a picture of him holding Abby next to Amy from his phone, The entire group proceded to the glass walls of the nursery & caught our first glimpse of our beautiful little angel. We then went to Amy’s room and waited and waited. Like you, no one told us what was going on. When we asked, they told us they were cleaning her up and running tests – this was all normal. After 2 hours, everyone was so tired, they all left except my husband and I, and Amy & Stuart of course. Amy started to not feel well and asked me to stay – she is and always will be a mommy’s girl when she is sick. After 3 hours, they wheeled Abigail in & I asked the nurse if I could hold her. She smiled and nodded. I picked her up and cuddled for a little while – just amazed that my baby now had her own baby – so many emotions – so much love. After a little bit, my loving husband Larry said that Grandpa had to have his turn. When I went to hand her off – she turned blue and made a horrble gashping sound. That’s when I noticed that the nurse had never left the room. She grabbed Abby and put her in the wheeled cart and ran – said not to panick – someone would be in shortly. Don’t panic???? Was she kidding??? Luckily only seconds passed before a nurse came in an explained that they wanted to wait for the doctor to arrive to fully explain things – that Abby had a weak esophagus and when she tried to suck, her throat would close. She said some newborns suffer from this – with proper treatment, it is not deadly. She said that the doctor would be in shortly to fully explain it. She then sat down and stayed with us. The doctor came in after that and had a talk. He explained that Abby had Trisomy 21. She had 2 holes in her heart and very weak esophageal muscles. He was very patient and answered our many questions. He explained they were going to keep her in the neonatal ICU for a while – they were going to monitor the heart. She was becoming jaundiced, so they wanted her under a lamp. He explained that they did not want to do surgery this early, and that they hoped the holes in the heart would close on their own. He was going to send a social worker in the morning to give us information that would be helpful. The entire staff was wonderful. Amy developed a fever that night, an infection had set in from the C-Section. She was heartbroken because they would not let her in the ICU. Between the families, we took turns every two hours visiting Abby – rubbing her skin through the arm holes in the incubator…all we prayed for was the heart and esophagus problems to heal. In two week, the smallest hole had closed completely and the larger hole had shrunk. Abby came home!!! She was able to drink from a bottle without choking. She was perfect! We did research on Down Syndrome but nothing could have prepared us for the blessing Abby has become. She is now 7 years old and in first grade. She amazes us with her courage and unconditional love. You cannot spend 5 minutes with Abby and not smile. We are truly blessed.
‘I know of no more encouraging fact than the unquestioned ability of a man to elevate his life by conscious endeavor.'(Henry David Thoreau)
The thing of importance is he come to us with the lord’s will.
In disguised blessing, he can fly the sky with his one wings.
we have to understand he is not different you and me.
he can stand himself although there are many stormy winds.
But if there is yin, also yang .
i sincerely hope he will be brave man in family’s warmth.
I actually found your site through a search (exersaucer vs. jumper) and I’m so glad that I did! This is the most amazingly beautiful birth story i have ever read. Noah is so incredibly lucky to have such wonderful, inspiring and loving parents. So happy for all of you!
I love seeing pictures of sweet Noah and feeling the love in every word/video that you post! I am a sister of a soon to be 21 year old Down Syndrome young man who is also a cancer survivor among other things. He has definitely changed all of our lives for the better and countless others that he has come into contact with. He is truly my hero! God bless!
You are a very brave man. May Allah help you and your wife to raise a healthy, happiness deserving child.
We will be praying for you all!
Thank you for posting your story! I am 5 1/2 months pregnant and our little man, Bobby, has Down Syndrome. We learned about his condition 3 months ago. I feel so blessed to know in advance and be able to find such amazing resources like this to help us prepare for his arrival. I can’t wait to have this squirming little one in my arms and share him with the world. Thank you for all you are doing!
Thank you, thank you, thank you!!! I weeped while I was reading your story. Thank God my kids were asleep. It took me back 6.5 years, when I had my little boy, Masih (meaning Messiah). I was a midwife myself and had similar reactions from colleagues and the hospital staff. The more bitter part of my story is that he was born in Iran and the reactions were quite different there. he was born with imperforated anus and they had told his dad to “Not consent to surgery so he would die in a few days!!!!! It gives me shivers every time i think about it! Of course, we did the surgery and thank God, he is now a happy, beautiful, lively little boy going to first grade tomorrow!!! We are now living in Canada and can’t be more grateful!!!!
Thanks again for sharing your story. Sending lots of blessings towards your family!!!
Love
Shahrzad
P.S. How can I post his picture?
thanks for sharing your story , I believe its encouraging enough. I had son , 4 months old now , he has trisomy 21. I am from Africa I and need to know how to manage at this age ..how to about the therapy . I solicit your advise
Hello there, I just wanted to say how inspired I am by you both as parents and it makes my heart smile how amazing your little boy is. My son Matthew was born in August 2012. He was born with Down Syndrome and we were shocked to say the least by the diagnosis. Reading your story was almost like reading my own version of events!! It’s been a truly wonderful last 13 months and I cannot imaginemy life without him. He is the most well behaved, laid back little guy ever and is so cute and cuddly. He is doing really well. I eenjoy coming on to this website and seeing what Noah is up to on Facebook. It’s so good to see how far Noah has came because this is something I was concerned about with Matthew. I know everyone is different but this gives me hope that my little boy will be like your little boy. Absolutely amazing!!! He is already wonderful but it’s just good to see what Noah is up to so I have hope that Matthew can also do the same things. Thank you for this wonderful gift you have given us all as parents of a child with Down Syndrome 🙂
Hi,
My wife found your site and sent me the link to this article.
My wife is 7 months pregnant with our 3rd child and we were told a couple of months ago that he has Down Syndrome.
We are British, so we are fortunate that we have excellent healthcare free of charge which is one less worry for us but we are still quite nervous about what will happen when he is born.
Despite all the advice and help we have been given so far it still feels like we are heading out into the unknown so I would like to thank you for creating this website for all of us who have been blessed with the opportunity to raise such a special child.
God bless and thank you again.
ps He won’t be a Mac or PC, he’ll be a “Debian Linux on EVERY device” boy. 🙂
Thought you would like to know that we’re not on our own babe:) Downs or any other condition does not discriminate, it can happen to anyone from any background, whatever religion or walk of life. These things teach us humility and understanding and tolerance towards others despite our differences. Natalie( Shi’a’s wife 🙂 )
Shi’a, You are so right…..you are headed into the unknown! However, my feeling is that no child comes with a guarantee, they are all different, and each of them is “unknown”. My daughter, who happens to have Down Syndrome and brown hair, is now 36 years old. I wouldn’t trade her for anything!! It is a much better world today for people with Down Syndrome; I have seen many good changes over the years. The BEST advice I ever got was from the pediatrician who told me “take her home and raise her just like your other kids”. At the time, I thought he was probably a little unbalanced!! In hindsight, that was the best thing anyone told us – she is a huge part of the family, and at times I forget the DS.
Congratulations on the new baby!!
I loved reading your story! We had a similar thing happen, our beautiful 3 month old son Benjamyn was born with downs (surprise!). He’s is the best thing that has happens to us he is the love of our lives!!!
Our story is very similar to yours. Katy arrived EARLY in the morning. We had no clue of the journey our life would take. We had one child already, a ‘typical’ daughter only 14 months older than Katy, who was whisked away at birth because of low oxygen. She was fine within a couple of hours, so when they took Katy we weren’t worried. No one said anything, but everyone got really quiet. A couple of hours later our pediatrician came in and told us how Katy had Down syndrome (and another complication with her bilirubin and her red blood cell count). We were stunned. We cried. But within a day we were a team, realizing that we were blessed. There were many other realizations and aha moments in the future, but Katy is now nine and is ‘awesome’ as she would say.
Adorable
He is a Precious Gift From God, My Nephew Has Downs And Is 22 years old. They Are The Happiest Loveing children In The World. Loved your Story
When my daughter was born, by C-section after a long labour in which she had disengaged, turned breach and then gone into distress, I was thrilled to have a healthy baby. Yes, she looked like a gorilla – it had been a 44 week gestation – her skin was peeling off her, she was covered in fetal matter and was covered in scratches where her fingernails were so long she had shredded herself, but she was alive and healthy and big – 9lb 4oz and I was just so pleased to have her with me.
She was barely 12 hours old when my pediatrician came and asked me if I had noticed taht she was a floppy baby, but to be honest, I hadn’t. Mt elder daughter was 2 years old and I had forgotten what it was like to hold a new born. Helen was ugly, but she had a fantastic suck and was eating for England. The doctor told me that he thought that Helen has a chromosomal abnormality. I immediately thought of Down’s Syndrome, which was the only chromosomal abnormality I knew of but dismissed it as I was only 28 and only older mothers have babies with Down’s right?
It took ten days to confirm the diagnosis, and both my GP and mt pediatrician came to tell me together which was really good of them, but it was still a shock, because I was in denial. Yes, Helen was floppy, and she didn’t use her arms much, but she was eating and sleeping well and I loved her and couldn’t see anything wrong with her.
I did have a little cry, and my 2 year old climbed onto my lap and said “It’ll be alright Mummy.”
It hasn’t been easy. My twin sister had a perfectly “normal” daughter 5 months later and when I got the news, I just howled and selfishly thought that it wasn’t fair. It took me ten months to realise that I wouldn’t change Helen for the world – she was perfect, and still is.
She is now 19 years old, beautiful, charming and a joy to me and to her 2 sisters who are 21 and 17. All three of them make my life complete, and I wouldn’t be without any of them.
Good luck with your forthcoming son – I am sure Noah will be a wonderful big brother – Helen was a wonderful big sister!
Kate
Dear Noah’s Dad
I think that this is a wonderful page for good up-to-date information and encouragement about Down Syndrome. My uncle recently had his 54th birthday, and he has DS.
I am a 3x gestational surrogate. Whenever I am in the process of getting to know the intended parents, I make it quite clear that I will not abort because of DS diagnosis. Where the parents disagreed, I told them I could not continue.
I have even guided parents to your page to show how much a child with DS can bring so much joy to their lives.
I hope you continue letting us follow your life’s journey with Noah and his brother. Thank you
I love your story, I am a grandmother of 3 yr old DS baby, his name is David Jahziel Salinas and he is the light of our lives…he is the medicine to my heart when sad, he is the ray of sunshine in my gloomy days..I love this kid with all my heart, from here to the moon and beyond.
Blessings to you and your family.
Hello! Thank you so much for this wonderful letter, so well stated. Would it be ok with you if I shared the letter with our own OB/Gyn – and pass it on?
We live in Phoenix, my son is now 11~ so I have been sure how or what to say to my now current OB- but I think she would like this info and would read it.
Would you mind?
You bet! Please share it!! I really appreciate it.
Please come back and comment and let me know how it goes after you share!
Thank you for sharing. We traveled the same road when our Judy Ann was born on April 04, 1998. God bless.
Thanks for your comment. What is your daughter up to these days? Does she have any siblings?
Thank you for sharing you story . While I was reading Noah’s story i had tears in my eyes . But at the end the way you guys handled the situation it made me happy and strong as person. No matter what happen your child is yours and that’s your happiness .
Thanks for the comments and for the encouraging words. We have a blast with this kid! Do you have children of your own? What’s your story?
My sister came across this site and sent it to me. She said your birth story was so similar to mine! I have a 5th old daughter with Down syndrome. But her diagnosis was a total surprise as well. It came with the whole negative speech from the on call pedi and many “I’m so sorry” from my OBGYN. We left the hospital totally freaked out BUT soon we would get much better advice from our new pediatrician, friends and family. Needless to say, here we are 5 years later with our amazing, healthy, daughter, who happens to be very smart and beautiful as well!
Thank you for sharing your story! It’s always nice to know we aren’t alone!
Amanda Watson
Crosby, Texas
Thank you for sharing your stories. My son and his girlfriend are having their first baby and they were told that Zachary Dean (his name) has Downs. At first, they were upset but now are every excited about his coming birth. They have told family and friends. Knowing ahead of time has given the time to digest the information and prepare. Shelly visits your website frequently. She is an ICU nurse and very smart. Zachary is due in January and we are praying for an uncomplicated delivery. Thank you so much for your stories, as grandma to be I have a better understanding of what their lives will be. Noah is adorable. I can tell you are a proud father. Best wishes for you, your wife and Noah. Keep the stories coming. Signed Proud Grandma
Thank you so much for sharing your story. Five years ago Sunday (11/3/2008) my husband and I received the news that our daughter Emersen was born with Down Syndrome. She was born 10/20/2008. We had no prenatal testing done as we would have never done anything different based on any test results. We knew we would love our child no matter what. Still, the thought of her being born with DS never crossed our minds. When she was born, our pediatrician said he was concerned about her ear that was misshapen and that she had a protruding tongue. My husband and I really never had any experience with someone with DS so that never occurred to us and our doctor never mentioned those words. He wanted to perform genetic testing. Two weeks passed and then we were called into the pediatrician’s office. He told us our daughter had Down Syndrome. Like you stated, “time froze”. I was numb. After those two words were mentioned I heard nothing of what our doctor said. In fact, we had to return a week later so that he could repeat what he said the week before. We love Emersen so much and wouldn’t change a thing about her. I would have preferred to know prenataly now looking back as we would have had time to prepare mentally and adjust. She brings such joy to our family and her big brother Tyler who is 9 is her hero and she just adores him! Thank you for sharing your son’s story and for letting me share ours.
Claire Huerta
Round Rock, Texas
Our first child was whisked away to be put in an oxygen tent right after birth, so I only got to see him 24 hours later. Our second child was put in my arms after they swaddled him; I sure wasn’t expecting to be able to hold him so soon! I was under sedation for the birth of our daughter (emergency c-section), so did not get to see her for the first day – and then I could only touch her through the incubator in NICU.
Noah is an adorable little boy and he is very blessed to have such loving, attentive parents. I have one of the most beautiful, loving little granddaughters ever! Her name is Mariah, she will be 6 in December, and she is our little blessing from God! We all feel very blessed to have her in our lives. My daughter and son in-law, Nicki and Jake, knew early in the pregnancy that Mariah was Down syndrome. They took such a positive approach to the arrival of their special baby girl! They prepared themselves with KNOWLEDGE, of what to expect, and when our precious baby arrived, we were ready and excited to welcome this gift into our family! Our biggest concern was that she was born premature, but even then, she was such a fighter. We have a support group, Supporting Down Syndrome Arizona, and they are absolutely amazing!!! Nicki and Jake are fantastic parents and I truly believe God chooses special parents and families to be gifted with a special needs child! Mariah and all my grandchildren have filled my life with the most happiness possible!
Hey,
just read this story and you made me cry. Don’t really know a person having the down-syndrom, but made an internship in a kindergarten for deaf people and there was a little boy having the down-syndrom. he was amazing and made me smile. i think you are a great dad and love what you are doing with this website.
and please excuse my english. i’m from germany, berlin and only learnt it in school.
best wishes
Loni
I have heard of your blog many times from various people, and it’s wonderful. Thank you for sharing Noah’s birth story-it’s beautiful. I found out that my daughter had DS while I was pregnant, so I had time to prepare. Still, the day I found out was similar to your experience, and it was the hardest day of my life. Today my beautiful Ainsley turned 1 and she is beautiful and the apple of my eye-I can’t imagine not having her in my life!
I am seeing this blog today only. Your lovely face and smile made me cry. You are so cute and lovely. God bless you my baby. You are just like my daughter Sruti having DS and 6 yrs old.
She is beautiful and smart looking
Congratulations on your family and the wonderful journey you are on. My son has DS and he is 36yo. I have 5 boys and he has brought so much joy to our lives. I started in PT,ST and OT when he was 2weeks old. Today he works, volunteers at the hospital where I work, golfs, swims, and loves to cook. He was main streamed into regular classes in middle school and high school EVERYONE loved him. We did not experience any negative attitudes at school. My advise to all new parents that God give the prev. of having a child with DS is to NOT hold them back, let them thrive in the world around them, let them go to camp when they get old enough they need to learn social skills. Wesley (my son) is very advanced and I pray that for your son.
I have been following you on Facebook and have interacted with you on your page. I think this was a wonderful idea to post this story. I just got through reading a post from a mom to be who had just found out that she was going to have a baby with Down syndrome through prenatal testing. She was asking people for help. She was feeling scared and sad and was asking for help. I also found out that my child was going to be born with Down’s through prenatal testing and felt a lot of the same feelings at first but it only pushed me to find out as much as I possibly could ahead of time about what my child’s life might be like. I read books, watched videos and talked to other parents. I got the same reaction from the nurses in the delivery room until my doctor told them that I was aware of the diagnosis. It hit me when I read the part where you said the part about your son’s cheeks because that was the first thing I said when I saw my son was “look at those cheeks”.
I did my crying ahead of time and hit the ground running from the day he was born trying to give him all the love he deserved and all the help I could give him. I had a great health plan who had Early Intervention in place before he was even born. I had a great husband, like yourself, who was there by my side to help along the way who loved our son with all the love he had to give. It can be a tough road sometimes but it is well worth it. Just the smiles alone make you feel like it was all worthwhile. My son is now 17 years old and he is a wonderful human being. So many people tell me how much they just love my son. They just think that he is such a great kid and he is most of the time. Of course he is a teenager and he is going through puberty right now so things are a little tough once in a while, but he has brought us so much joy. He had some, i feel minor, medical issues compared to some of the other kids with DS, such as being born with cataracts, he had them removed when he was 3c and 4 months old, wore contacts until he was about 7 y.o. when had corrective surgery for a lazy eye and because of some scar tissue preferred to wear glasses. He also had a small whole in his heart when he was born but that closed up as well. I feel that we have been so fortunate to have Ricky in our lives!
Thank you for sharing as I am sure that your story about Noah from birth and ongoing will help a lot of parents who are not sure what having a child with DS is like. God Bless you and Noah!
Hi, when Tom was born, in 2011, it was not clear at all that he had Down syndrome..we knew it just three days afterm that there was this doubt..before we were told just that some values in the blood test were not regular, and I thought I had an infection during pregnancy..so when a doctor told us, three days after, that they wanted to make a cromosomic test, I had a relief, at least I knew what was the problem..on May 13th we had the answer, it was the day the Pope Woitila had an attack, in 1981 and my husband prayed him a lot, because Tom went to hospital Gaslini the evening before Pope holy Day, may 1st..sorry for my bad English…Tom is healty, lively and I pray Always that he will have very good luck ..I breastfed him 32 months, I have just stopped because I thought to be pregnant again, but it wasn’t so…we have to be full of hope!!!
I love your story and an so glad you shared this, your little boy is beautiful and very inspiring to me to look to the future, i am 19 and had my little boy on the 20th december 2013, me and my boyfriend also had no idea that our baby had downs syndrome until a week after he was born, i was in complete and utter shock but my boyfriend and family have been amazing and i now realise when i look into my beautiful boys big blue eyes that i have been blessed with such a inspiring life changing gift! Thankyou for your story and your website is amazing to so many people, enjoy your son every minute if everyday xxxx
Hi … I saw your article in Citizen. We have a 3 year old daughter with Down Syndrome 🙂 I work for Virginia Commonwealth University doing video for “Partnership for People with Disabilities.” I’ve done a couple videos interviewing people with DS. One is a young man Zak, who has is in a new program at VCU called “ACE-IT in College” … they accept people with intellectual disabilities and provide student coaches to help support them. The second video is of a young women who’s family started a bakery for her. She does a lot of the baking, making recipes from scratch. Very impressive. I thought I would share these based on what you said in the article, there’s never been a better time to be born with DS 🙂
ES HERMOSO, QUE SE UNAN Y COMPARTAN EXPERIENCIAS, YO TODOS LOS DÍAS COMPARTO EN MI FACEBOOK LAS FOTOS DE NOAH Y DE OTROS CHIQUITOS, FELICITO A LOS PAPAS DE NOAH POR EL AMOR, ENTEREZA, POR SER FUERTES Y ACEPTARLO COMO ES, UN NIÑO DULCE Y CARIÑOSO, QUE TARDARÁ UN POQUITITO MAS EN APRENDER LAS COSAS PERO CON SUS PADRES QUE LO ESTIMULAN TANTO SERÁ UN GENIO. LES DESEO MUCHA SUERTE; SE QUE EL FEBRERO 24 NACERÁ SU SEGUNDO BEBÉ, MUCHA SUERTE!!! ESTARÉ ALERTA A LAS FOTOS, Y ESTOY SEGURA QUE NOAH SERÁ UN EXCELENTE HERMANITO MAYOR, LOS AMO, APRENDÍ A QUERERLOS A TRAVÉS DE LAS FOTOS, CUIDENSE MUCHO, BESO A NOAH!!!! <3
I just loved reading your story and how you handled being new parents of a down syndrome child. My mother gave birth to my brother in 1960, just 3 years before I was born. She had 5 children and Gary was # 3. They told her back then that he would not make it past 7 yrs old, he would never walk or talk. They weren’t sure what his condition was back then, just some form of mental retardation. For yrs they thought that it was the 16th chromosome missing or attached to another one. He was documented in John Hopkins and about 15 plus yrs ago, they contacted mom to tell her he had Trisomy 10Q. They tried to get her to put him in a “home”, but she would have none of that. She enrolled him in Special Ed, Speech Therapy and Special Olympics. He had the love of a mother and siblings that wouldn’t hold him back from learning. He taught himself how to tell time, read a calander and knew all of our Bdays and what day it fell on for that year. He learned to ride a bike and rode all over the neighborhood making friends. He loved to help people with their garbage cans, taking them out and putting them up once the garbage man came. He was subjected to being made fun of as a kid by others that I consider “ignorant”. After graduating from Special Ed, he went on to work at a workshop for Special Ed individuals until he started having ongoing health issues with asthma and his heart condition. Our mom passed away 3 yrs ago, and we really thought that as close as he was to her, that he just wouldn’t make it very long. He made it until Jan 17 of this year, he was 53 yrs old. His heart issues were going to become more frequent the Dr would say. His primary Dr would comment each time that I took him in after our mom passed what a great job she did and us as a family in taking care of him, as he was in his 50’s. I always knew that we were blessed by God to have Gary in our family and to have his love for each of us was so special. He taught us so many things, mostly compassion for others different from us. He was sick and in the hospital 3 times recently and the last time, his lungs just would not clear up and was facing going on a ventilator. We knew we couldn’t do that to him and that it was time for us to give him back to God and be reunited with our mom in heaven. After his passing, my cousin had seen a post on facebook from a neighbor that had lived in the neighborhood during the 40 yrs that Gary lived there. She wrote about how sad she was to hear of his passing and how he touched her life. From there so many others commented also on what Gary meant to them and how they would miss him. It was beyond heartwarming to us as a family to read what all they said about our “Special” brother. Also, friends of ours that knew of Gary, but really didn’t know him or weren’t around him much, have all said that they will see and hear things differently now having seen what an impact Gary, with such a simple life, had on so many people. We were always taught to not say the “R” word, but that these kids are “special” and that is exactly what they are and if you are lucky to have had the love of one, you are a better person for it. God Bless and keep raising awareness.
Thank you for sharing! So many stories I have read tell of the doctors telling the parents about the DS almost immediately after birth and in our case it was the elephant in the room that NO ONE would mention. The doctors were actually quite sheepish about even alluding to it. I knew the second I saw my son that he had DS and I wasn’t sure why the doctors wouldn’t say anything. We were very blessed to have our specialist come see us a week later and congratulate us because he knew first hand how special having a child with DS was. Thank you so much for giving such a positive look into the world of DS!
As I sit here and read your beautiful story and I often wonder why does it seem so terrible to cry. Crying is human, it is natural and they are not always tears of sadness but that of joy. I wish you and your family many years of happiness and I thank you for sharing your story with all of us. One of my best friends son has DS and he has saved me in so many ways. He has brought more joy to my life and hers it is unimaginable. He has taught me so many things and I would not change a thing about him. He is my blessed bouncing baby boy and will be my son’s best friend and I could not be happier. Thank you again! Carrie
Thank you so much for sharing your story 🙂 my daughter also has Down syndrome and like you guys my husband and I found out she had DS when she was born she had heart problems which caused us to stay at Baylor for about a month she had to be on oxygen untill she could breathe on her own after we got out of the hospital we were then sent to childrens medical center so they could see what was going on in her heart and turns out that she had a big hole in her heart and her doctor said she need open heart surgery ASAP and at only just 2 months but thankfully her surgery went well and she hasent had any health issues since then 🙂 now she’s 2 years old and walking around the house!
Tfs!! Noah is so handsome! God has truly blessed your family and him! I have a 5 yr old with downs and she just amazes me everyday!!! She has been through so much currently battling leukemia and fighting strong! Noah’s birth story is soo similar to my V’s ( the doctors and nurses reaction to an Angel being born) however, my V had heart and intestinal issues. She’s had a pull through at 5 days old (Hirschsprung’s disease) an open heart surgery at 5 months old (she had a VSD closure) and now is in maintenance from her battle with cancer (ALL -leukemia). My V chose us as her parents and I am ever so grateful for every day she is with us! I pray to God that he continues to give her strength and me patience because as we all know kids can be a handful especially little ones that love exploring! May God Bless!!
I will pray for your daughter as well as Noah and all the other people and children with difficulties. By he way your daughter is adorable.
I will pray for your little Noah, thank you for sharing your story, It was amazing. I hope that Noah is doing well. He is absolutely adorable. I know that it must be difficult but I also know that your family can get through it. May God bless you and your family.
What a beautiful birth story! Hooray for Noah!
I enjoyed reading your story. Noah is such a beautiful little boy.
My story is a little different from yours as we are the grandparents raising our DS/autistic grandson (Logan).We were already raising Logan’s half brother who is ADHD ODD, and deaf in one ear. He displays the symptoms of fetal alcohol syndrome although I am told he is to tall for that but he has his problems also and I told our daughter that we could not raise another child. I was in the delivery room when Logan was born and he was the cutest little guy and seemed perfectly fine to me. Later that night my daughter called me and said that the doctors had talked to her that Logan was Down syndrome. It took me by surprise and I thought for a moment and told her she could not send him back and we would just have to take one day at a time. We’ll needless to say she left the hospital and Logan had to stay in PCU for a week. He was having trouble sucking and he had a small hole in his heart valve. I would go to the hospital every evening after work and feed him, talk to the doctors, watch the ultrasound of his heart and just love on him as much as I could. My daughter never came to the hospital until it was time for him to go home and they would not release him unless she stayed for 8 hours and learn to feed him etc. the next morning she took him home and was maybe home an hour and calls me to come get him. “She stated she did not like him or want him and for us to come get him. She met my husband at the door with diaper bag in hand and handed him to my husband and closed the door. We have had Logan since. He is now 7 years old and holds such a special place in our hearts. It has not been easy by far. We both lost our jobs soon after Logan was born that we had worked at for over 30 years, but I would not trade raising these two boys for anything.
Logan is autistic and non verbal also and that is the hardest part I think. When he is upset and not knowing what is wrong breaks my heart. Therapy is working on getting a communication tablet and I think that will help so much.
All I can say is God sends these special little people to us for a reason and we have to do all we can to help them be the best they can.
I look forward to seeing your daily video. I try and follow so many of the sites on DS. It is good to see comments and all.
Hi.
This is one of the most beautiful things i have ever read. I didn’t want to get to the end! Enjoyed it so much. You have a lovely family and blessed with two gorgeous children. I love reading everything you put on FB and Twitter. Thank you so much for sharing your pictures, comments, thoughts, etc. Please keep it coming!
Thank you again.
My son is 6 years old SD, ano it was ver difficult for me too 🙂
Congratulations on your handsome boy:-)
Thank you very much for sharing this beautifull story, i have been following you and enjoying each one of your pictures and i could say i love NOAH very much, i can see that he is such a nice, kind and sweet kid, for me they are very special little person that God send to our live to learn from them.
Congratulations, because i can see you are such a great parents, i admire you two very much, you have done a great job with NOAH, you look like a very happy family, God bless all of you.
Please forgive my English, but i really want to let you know how i feel about you, Noah and the little newborn baby.
God bless your family, h, k & blessings from me.
I am sending you a picture of my dear niece Isabel, she is 7 years old, sweet girl and very inteligent too, she can speak and understand English, Spanish and sign language very good, she is the best gift God have gave us, she has a 4 years old sister and she have learned very much from her, Ma. José has been a great helper for Isabel and they love each other very much.
I loved this story! truly touched my heart! my son rico was born 7/16/2012 (he was our second) and, like your son, he was diagnosed after birth. we didnt find out until our 2nd day in the hospital. i remember being really mad at my OB, mad at myself, until one day a friend asked me “what would it have changed knowing sooner than later? would you have aborted him?” which of course i said no. but they already knew that i wouldnt (it was difficult for my husband and i to conceive). they just wanted us to realize it wouldnt have changed anything, and they were right, and i wouldnt have wanted to change anything. his extra chromosome makes him extra special, he is perfect and normal and the blessing we waited for (especially to my older daughter who thinks the world of him and is his biggest supporter). thanks for the inspirational story, wish i had read it sooner!
Hello Noah’s Dad and Mom too,
Nothing makes me cry more than a story that reminds me of the feelings I had when my son was diagnosed with Downs when I was 19 weeks pregnant. I had also planned my son’s life out for him and had to say goodbye to the child I had created in my mind. It’s unfortunate that as imperfect humans we can’t see the beauty in something different until we see it, hold it, feel it for ourselves. It would have spared me weeks of fear and panic; I love my son more and more everyday and though he can be hard to handle some days, I wouldn’t trade him for the world. Thanks for sharing your story with us, it’s always nice to know we are not alone. Oh, and I hate to say but I think my son may be slightly cuter than yours…LOL!!
I grew up with my younger half-sister born in 1962 that had severe DS.
She’s now 50 yrs old.
My own daughter (now 28) was born in 1985 and has ADHD, LD, ED, and some speech problems.
When she was a toddler, I was going to have a T-shirt made that says:
My dad says:
I AM special
check my FaceBook page for more info
Here’s some samples of a Burt Lancaster / Judy Garland movie from 1962
“A Child is Waiting”
Produced by Stanley Kramer
Directed by John Cassevettes
my PDF notes about the movie:
https://www.dropbox.com/s/5j9lirq69l8urqq/A%20Child%20is%20Waiting.pdf
> Play all
OR at least watch sample # 8
http://www.youtube.com/playlist?list=PLy61IjRsUuJvoizW3jIE1QB54Ov2poif_&index=1
.for some of us . . .
EVERY DAY is Special Education awareness day
I’m on my phone so this will be shorter than normal but we have similar stories! Isaiah is now 3 months and we’d LOVE to connect with you. He’s the light of our lives and his surprise birth diagnosis has changed our lives only for the better. You can read a bit abt us here:
http://sports.yahoo.com/news/caddy-shock–isaiah-tesori-and-his-journey-to-augusta-002912240.html#
And here:
http://www.pgatour.com/news/2014/04/01/paul-tesori-michelle-isaiah-baby-down-syndrome.html
As well as on our website. I would love for us to connect and help share our sons with the world.
God bless,
Michelle & Paul Tesori
Jeremiah 1:5
What a beautiful story!! Congratulations on making such a beautiful baby!! 4 weeks ago I(23) have birth to Luca, who was diagnosed with DS. My nurse made us aware of it as soon as he came out of me. She told us that he has some features that are associated with trisomy 21. I guess we were so tired that we did t really think about it. He looked completely normal to is. It wasn’t until the day we were leaving the hospital, they took him to the NICU because of jaundice. He was only 5 lb 7oz when he was born at 37 weeks.
I cried at the NICU where the AHole dr was explaining his DS symptoms to his “students” with his back facing to us…this was out first time actually hearing about it that it’s determined…I flipped out on him for being so rude and inconsiderate. Besides that everyone in te hospital were very nice and positive and constantly telling us what a beautiful and good boy he was.
The first night leaving Luca in the NICU, we were driving home and listening to Joel osteen for some support and good mood…we broke down in tears, my husband and I. I’ve never seen him cry. We didn’t undestand why us! We were so upset with life and God at that point. WHY US?! WHY LUCA?! I was (and am now continuing) chemo for Hodgkin’s Lymphoma, one thing after another.
But now, especially after hearing stories like yours and many others, we are content, and stronger and more positive.
We asked God for a beautiful healthy baby, and that’s what we got in the end:)
Thank you again! Enjoy your baby as we’re enjoying ours:) and thank you!!!!
Hi I just wanted to say thank you for sharing your story. I found myself shaking my head in agreement to what you guys had gone thru. My son Ezekiel (Baby Zeke or Eze) was born December 15, 2014 at 3:55 am. He too has DS and is my warrior who was born 6 weeks early at 4lb 10oz. My son is my joy n rock. I’m still learning so much about DS and I’m grateful for parents like you and your wife who share there experience. Baby Zeke has gone thru so much n he is a fighter. We too had the swallow study done, my boy had a surgery done a day after being born (had an obstruction in his intestine) he had defect in his heart, a short right femer, etc I know God has been tugging at my heart to do something about this, I’m
Just not sure where to start. Anyway I can go on n on about Zeke here is a photo. I noticed you guys were just in SA and I’m visiting family in Laredo but heading back to Chicago soon. I hope we can connect n offer me advice and wisdom. Thank you and be blessed
Hi I have a four month old girl named Ariel. She was diagnosed with DS at birth also. So glad I have found this site (I have subscribed). I am inspired as I also am blogging about my journey. Cant wait to look through all the videos. Well done! Noah is absolutely gorgeous. 🙂
What a awesome story
i never thought i will have a special baby with down syndrome, i keep on crying for the next 3 days and my lovely husband reminds me to the God, pray and pray, and He will leads the way.
I am Pauiine im 49 yrs old and have followed Noah since he was born and you started posting about his life etc. he is so special to me hes the son I never had I myself have Spina Bifida with Hydrocephalus basically I cant walk so am wheelchair bound and I took a shining to Noah from the first day I saw his pics on your page n followed every step he is so cute so funny so clever and he will achieve all his goals in life in his own time and excel himself to be the best he can I have no doubt in that
I used to work with children with all sorts of disabilities and Id go home of an evening knowing id done the best I could to make even just one child happy.
ITS A PURE PLEASURE TO KNOW OF NOAH N JAXTEN AND THE FAMILY STORY I HOPE WE CAN BE FREINDS FOR A LONG TIME TO COME PLS TELL NOAH I SAID HI ALL THE WAY FROM THE UK X
What a beautiful story and handsome little boy! I follow you guys on fb and look forward to the daily updates. My pregnancy was one filed with many unknowns with my second baby (Tripp). At 20 weeks, we were told he had hydrocephalus and within 2 weeks all tests and scans showed that it was severe. We were advised to maybe just try again. We opted for a second opinion and without questioning us as to whether termination was a choice, our new drs told us that they would do everything to “fix” our baby!!! He is now about to be 3 and is doing great!!! He has taught me so much more about life than we could have ever learned without him! Thank you for sharing Noah with us and the entire world. He is truly a gift from God!!!!
Summer I am a 49 y4 old lady with spina bifida and hydrocephalus if u wanna chat just add me on facebook and lets chat I could have answers about things ur unsure of with hydrocephalus n it would be nice to make a new friend thanks to Noah n his dads page
love Noah n Jaxten I think Noah is amazing I follow him constantly to see him grow n progress plus hes adoreable as is Jaxten
2nd attempt to post photo!
Got it! So adorable Where are you guys from?
Thanks!!! We live in GA!
Dear
Today i read your story about your son Noah and it took me back 25 years when i gave birth to my eldest son Nafaa( Noofi).I am a pediatrician also and during delivery they didn’t show him to me and they kept asking about the pediatrician to come for checking him. But the difference between your story and mine that my pediatrician was so bad in telling me and my husband the truth and he told that he will not survive for a long time .from that moment i changed this pediatrician ( who were one of the teachers in my medical school). Now Noofi is 25 years old and i have another two kids,Sarah 24 ( she will start the medic school in August ) and Joseph 22, in premedical school. Noofi now attends vocational school ,learning to speak English as our original language is Arabic and we just moved to live in USA.Today we receive a call from a restaurant manager who ask us to hire Noofi in a part time job.He is a lovely young man talented in drawing, love playing music, doing construction with Lego and even he is short 4 9 but a good basketball player.
He is the blessing of our family. Every day I thank god for everything and pray for that pediatrician .God bless you and your family and bless you all.
One day I saw a cute baby, about 9 mos. old, smiling at my in the grocery store and I commented to the mom on what a cute baby she had. She gave me an odd look and replied, “he has Down syndrome, you know?” I replied, “I can see that. What a sweetheart, such beautiful eyes and happy smile, congratulations, he’s beautiful.” She looked a bit confused and thanked me. I felt so sad that I might have been the first person to not let the baby’s Down syndrome frame my comments in a negative light. I love how you have made the decision to celebrate your child!
Good morning. I was on the computer looking for some positive stories regarding Down Syndrome. My daughter, Shannon, is due to have her baby any day now. She is 25 years old, and was told only two weeks ago, that her baby has DS. She was devastated to say the least. So much, that she considered adoption. All through her pregnancy, she was having ultrasounds. In the beginning, she started spotting, so they did an ultrasound. That was at about three months. She was then told that the baby had small bones. She even went to U of M hospital to be checked. No one said anything about DS. They just said, his femur, and tibia was short. Only when the midwives, who she wanted to deliver Landon, said, you need to go see a high risk doctor. Dr. Mason was the one to discover that Landon had DS. Of course, no one expected those two words. Shannon is having a hard time with this. She cries all the time. She is reading so much medical things that can happen to her baby boy, that it is not helping her at all. I told her to start reading memoirs of people who have DS children, and that that probably would help her. I am going to have her read your story, which moved me so much, in hopes that it will help her. I pray everyday that Landon does not have severe DS. I believe this to, will change Shannon’s life for the better. Thank you so much for sharing your story. God Bless your family.
Hi,
I am writing a newborn care ebook with lots of how-to videos and pictures and have a section on newborns with disabilities. I was searching online for pictures and found your very touching story. Noah is beautiful and amazing lucky to have you two as parents. I would love to be able to use some of your pictures for my book. Please get in contact with me so we can talk more.
Thanks,
Lauren
Thank you for sharing your story! Every baby is “fearfully and wonderfully made”. At my daughter’s 4 month well-check, the Dr. thought her eyes resembled those of a baby with ds. Has anyone ever heard of a diagnosis this late? Thank you for your time.
wow, this brought me back to 18 yrs ago when my first son was born and we were told about his heart defect. your post had me in tears and smiling and nodding all at the same time. beautiful family!
I loved reading your family’s story. We have a church in our little town called The Church of the Exceptional especially set up for those people with special needs who wish to have a larger peer group to worship with. Everything is set up for their needs and interests. It’s not big but it is a wonderful place. I discovered it when I was first saved and singing in a gospel group. My husband’s father was an ordained minister and felt called to teach there.
I was an instructor in a local organization, Rutherford Life Services, which provided some work and lots of love and activities. These are my guys. My husband and I love them and love being around them. We don’t consider them accidents or mistakes at all. We see that God has created them with unique abilities and gifts that make the world a better place. Consider this. They love unconditionally and without pretense – rare in this world. They could teach us much about creative thought because they naturally think “out of the box”. They remind us to keep the wonder of life and the world around us alive. Many of us loose this ability when we grow to adulthood. They are the most loyal friends you will ever have. They nothing of hypocrisy. What you see is what you get. They never stop trying. They rejoice at everyone’s accomplishments and not just their own. They are great encouragers. When they pray they come to Him as He has asked all of us to come to Him- with the heart and humility of a child who loves and trusts his father.
We were unable to have children of our own and are older in life now. For six years a grown women with special needs lived in our home with us. We love her still and would take nothing for our time with her.
I encourage you and your wife and your two little ones to keep doing what you’re doing. It lets the world know and gives glory to God.
Thank you for sharing your story. My youngest sister has down syndrome she is 48 and has a wonderful life. She has brought are family so much joy. My life would not be the same if she was not apart major part of it. Just remember your son Noah can conquer the world the same as any one else and he will do it with more love and understanding.
Hi Noah’s papa! How is Noah now? Our story is quite similar to urs.we knew about our baby’s diagnoses just after birth. I am from Bangladesh.In our country people thinks Downs as a curse. I don’t know what I will do with my baby boy AFNAN. Your writing is so touchy that I couldn’t hold my tear.my best wishes for you & ur son.
I’ve only just felt able to read your full story of Noah’s birth but have been following you for some time. My daughter Ellie was born with Down Syndrome back in 2003.
The difference with my story is that after years of infertility this was a miracle pregnancy aged 40 and I knew from the 12 week scan there was a 1 in 58 chance of Down Syndrome. I was pushed to have an amnio but refused it, this was my baby and I wouldn’t risk such an invasive test to know for sure. I also knew that I would be encouraged to have a termination, and again there was no way that was going to happen.
Things started going wrong at 20 weeks when I developed gestational diabetes, I got that stable then had to change my doctor to one closer to home ready for the birth. I had to have a medical at the new Dr’s and what they discovered resulted in me being admitted to hospital. In the 4 days since the last check I had developed pre-eclampsia. My daughter was born by emergency C section at just 27 weeks and a tiny 1lb 4oz. She was whisked away to NICU.
I was on many drugs for the pre-eclampsia at that point and a bit out of it, so it wasn’t until a couple of days later that I realised nobody had mentioned Down Syndrome. I asked, they didn’t know, so they ran some tests, and yes, Ellie had Down Syndrome. It made no difference, she was my daughter, not ‘a Down Syndrome baby’. Ellie didn’t need ventilation, she only had a cpap and was a feisty character, pushing her legs out of the covers when she was supposed to like being tucked in. She certainly moved around a lot despite being so small and early. We had lots of kangaroo care cuddles as I learned how to do her cares in NICU.
You may have guessed where this is going….my little girl got very sick really quickly when she was just over 3 weeks old. That evening they told us she was unlikely to survive the night, but she kept on fighting for another 2 days. Sadly we reached a point where it was only the machines keeping her alive and had to let her go. She was just 27 days old.
It was a bowel infection, necrotising enterocolitis that took Ellie, although her death certificate shows Trisomy 21 and prematurity as contributing factors.
11 years on I feel privileged to have had my month with my special little girl. I was pregnant again 2 years later but miscarried at 12 weeks and decided not to try again.
I love reading about Noah and seeing how he is ‘Noah’, not ‘Noah with Down Syndrome’. He is a gorgeous boy sent to special parents who love him for who he is.
You are so blessed….our special children are a true gift from God. I had 5 miscarriages before at the age of 35 I finally gave birth to a BEAUTIFUL full term….baby girl. I had a perfect pregnancy….the happiest time of my life! I gave birth to her and within 12 hours my husband and I were given the news that she had Down Syndrome. I was just fine….God had finally given me the child I had prayed for for such a long time….she was perfect in my eyes. My husband however left and finally 9 hours later he comes back told me he just had a hard time accepting the fact that she wasn’t perfect. He tried but after 4 years he found his happiness with another woman and left Cassandra and I alone….I was scared so scared….I asked myself….Could I do this alone….Could I be strong enough to do all the right things and be all that Cassey needed? Then God told me YES….THIS IS WHY I CHOSE YOU ….. and I have never looked back since. Have I raised her all alone? NO! God has been right by my side and family and friends have picked up the pieces many times. Is Dad still in the picture? Yes he sees her almost every other weekend…..and has learned to love her and accept her for the beautiful….Happy…loving…stubborn person she is!! She is now 17 and a Junior in High School. I couldn’t be more proud!!! Did I raise her without mistakes…no but I know I have done the best I could and loved her with every inch of my being and will love her FOREVER!!! She truly is my gift and blessing from God!!! PTL!!!
Dear Rick,
I came across your site while recently helping a friend research developmental toys for children with special needs. After reading your great article on toys, I decided to also check out the article about Noah’s birth story. I would like to first thank you for sharing your story. My wife and I are also the proud parents of beautiful Down Syndrome child. My daughter, Olivia, was coincidentally born a few days after Noah on December 17, 2010. Unlike you, we beame aware of her condition during the pregnancy. My wife had tested positive for high risk during her initial perinatal exam. At the end of the second trimester, she had an amniocentesis performed and the results came back positive for Down Syndrome. Our post-news experience with the perinatal doctor was dismal, to say the least. I also made the mistake of initially turning to the internet for information. All the first hits I got were nothing but hopelessly, abysmal articles. Fortunately we found the strength within each other to bounce back and enjoyed every minute of the pregnancy anxiously awaiting the arrival of Olivia. Today she is a beautiful, loving, healthy child that brings out the best in us every day. My wife and I are so grateful to have her in our lives.
We love to read/hear stories about other fortunate parents with Down Syndrome children who experience the same joy that we do. Thank you for sharing your story and for providing such good information on your site.
Many happy wishes for you, your wife and Noah.
I am so touched by your story and you are such an inspiration to people taking care of persons living with disability. I am from Kenya and I hope that you dont min d if I tell vpeople about you through my website.
God bless you
OMG! Thank you for sharing Nohad´s story.
We have Santi, our little angel. Yesterday he turned 18th months. He really changed our lifes. He tought us the true love. We feel so blessed to have Santi in our family. We are from Costa Rica, and I I personally am a big fan of Noha. I follow him in facebook all the time…
Thank you again…
The church. at which I am a member, we have 2 young men that are also members that have down syndrome. One is the 16 year old son of our pastor, and the other is the 29 year old of a couple that I love dearly. And to hear the mother testify in church about the 29 year old and how the doctors placed him in her arms telling her not to expect much out of him will bring tears to your eyes and chill bumps on your body. Both of these boys are remarkable! The pastors son plays the piano and sings baratone very well. So please people don’t put limitations on these children. They can do a lot with enough prayers, patiences and love.
Thank you so much for sharing Noah’s story! My mother’s uncle has Down’s Syndrome and he is now in his 60’s! There was a chance that my son could have had it however he didn’t. …more and more people should celebrate the lives of everyone with Down’s…there is no greater love or innocence <3
Hello, I want to tell you a story about a wonderful lady I met @ 20 years ago. She had adopted her niece w/ DS, because the baby’s parents didn’t want her. When the girl was @ 5 years old, my friend to her daughter to meet her birth parents for the first time. The only thing I recall her telling a group of us is that her nephew ( the girl’s brother) who was @ 8 or 9 years old asked her this question, ” If I get sick and my mom and dad don’t want me, will you take me?” My friend could barely keep from crying. And she told her nephew that she would take him if he were to become ill and his parents didn’t want him. Needless to say there wasn’t a dry eye in the group who heard the story.
The effect the birth parent’s decision had on their other child was devastating. I think of the little boy, who is now all grown up, and hope he has found the peace and love he needed.
Hi
I’m not sure how I came across this story. Blog links I guess. But I was so blessed to read your story. Your son is beautiful. And I too believe every life is to be celebrated.
I pray constantly for a cultural shift in this thought process.
Thank you.
Please, please, all of you with various types of brain injured children – there is an intelligent, capable child trapped under the injury. Please check with The Institutes for the Development of Human Potential. Watching your Down Syndrome child graduate from high school and go to college has to be the greatest thing going.They have found that most Down Syndrome children have average to above average intelligence. They do wonders with autism and other types of brain injury too. Please, just check it out, it involves lots of work but it WORKS.
Thank you so much for sharing this. Our baby was born with other medicals concerns. We knew during the pregnancy that something was wrong. We heard three different possible syndromes. It turned out that he did not have a syndrome, only some physical problems, but throughout the pregnancy it made me think a lot about parents whose babies have Down Syndrome. Esp when people made comments that indicated a placement of value by the child’s health etc. thank you so much for sharing what a beautiful gift they are. I
You guys are so lucky. Thanks for sharing this, I am inspired.
Thank you so much for sharing your story. Only blessings to you and your sweet little son!!!
I strongly believe you will have wonderful times with him. I was once visiting for some weeks a friend who was working with DS kids and it was such a lot of fun. A friend of mine (then 32, after having 3 “normal” children) also gave birth to a son with DS. The parents first were shocked, especially the husband, but as you said a birth is no funeral… now little yonathan is already 3 years old and a cute boy and adored by his parents, family and friends.
I learned that there are different DS, and that there are chances if you have the possibilities to stimulate your kid DS kids learn a lot. Last year I looked at the film alphabet. In this film pablo pineda was interviewed (https://www.youtube.com/watch?v=74xGSYUs0YM). He is such an amazing person and he has a lot to teach – like: we ourselves decide between “fear” or “love”.
I see you already made you decision with your little noah – for love.
Much love,
Rose
I LOVED your story!! Brought tears to my eyes!! My son also has down syndrome. I didnt know the whole time i was pregnant and didnt find out till he was six weeks old. But congrats…ur little man is goegeous!! Hes one of a kind. God gave u an angel like he gave me!!
hi im 13 years old and i just read ur story on ur son and its beautiful and it helped me alot on a project im doing i was wondering if i can share this story with my friend on my project
While working on my social work degree as a mature age student, some of the relief work I did with children and youth was with intellectually disabled persons. Those with downs syndrome were always a pleasure to deal with. OK they are just like us and on odd times can have their moments too. Their ability capacity is actually often very good as their demenour. They are very responsive to a loving sensible environment where family encourage them to the max and mindful of their health needs. Their social responsiveness and capacity to fit in society appropriatly is excellent. The only extra costs fit the family are the likelihood that they probably wouldn’t end up living fully independantly, may need some extra attention oi health matters and would need extra effort in facilitating their development, especially early on and steering their positive self concept, constructively managing the odd frustrations over impractical independance desires. Sure the downs syndrome child won’t be one to follow in the parents footsteps or do some of the generational stuff of college, marriage and grandkids or look after oldies later. Hey lots if “normal” kids don’t who do drugs, jail etc..well at least your downs syndrome kid will never hurt you like that and otherwise be a great asset as the person they are. I disagree with the view that generalises about all disabled babies, future later persons as something to welcome. The syndromes that impact in the capacity to socially connect or respond positively to pleasant stimuli, are self absorbed, behaviourally aggressive and reactive are unfortunately a burden that still require humane treatment, compassion, efforts re intervention.
Yet many of their parents are still attached to them, though few would claim not to have aborted them if they knew while pregnant.
Wheras having known persons with downs syndrome, I personally couldn’t see terminating a downs syndrome child at 20 weeks in good nic as a likely option.I even told my son while they had the standard free (it is in Australia)2 step of the 3 stage downs syndrome testing with the final option at 20 weeks if anything looked questionable(free also) as it seemed dubiously pointless. Could his wife kill a 20 week baby just for downs???? Where the testing is done for free, the money spent would be better used in testing for more problematic syndromes. In fact most families with a downs syndome member would affirmatively state they are glad to have them,
that persons a bonus.
Thank you for sharing. I love seeing the updates you post on Noah. He’s such an adorable little man! It’s so refreshing seeing how you love & support Noah, a blessing from God. Noah is very blessed to have such a loving, supportive family such as you and your wife. Every child needs a loving mother and father such as you two are. I was very touched by your story and look forward to continuing to follow Noah! God bless you and your wife and your beautiful family!
Oh thank you thank you thank you thank you thank you thank you. Did I say thank you?
Your story is so beautiful and it makes me so happy because my husband and I went through such a similar experience (you can read about it on our blog). We found out our daughter had Ds a week before she was born. My doctor had to tell me over the phone and she said it to me as if someone had died. At first it felt like someone HAD died. I cried and grieved and felt completely devastated. Now I know how foolish it was to treat the news like a death sentence.
Our daughter Phoebe is so amazing and wonderful and smart and funny and more than we could have ever wanted from any child. Her birth and her presence in our lives have been nothing short of a fantastic celebration.
It makes me so happy to hear stories like yours and to read your posts and to be part of this wonderful community of fabulous children and parents.
Thank you again!
Molly
Rick and Abbie, Thank you for sharing your story with all of us. I have loved little Noah since the very first time I saw him on facebook. My sister has Downs and is 29 this year, but hearing it from your side as a parent is different from kine as a sister. We knew ahead of time and we’re able to put things into play before Shannon’s arrival. It’s funny how some people look at them or act around them. It breaks my heart. They are full of soooo much love and they are soooo great. Again, thank you for sharing your story and I look forward to seeing Noah and your family updates everyday.
Beautiful story! I am a mom to a 1 year boy who was also born with DS his name is Nathaniel (which means gift of God) I can relate so much to your story even though at 12 weeks we were told our son would be born with Down syndrome. He has brough so much joy to our lives and has changed it for the better. He is PERFECT just the way he is.
Hi,
I just wanted to let you know that I love your story and thank you for sharing! My son was born healthy besides being jaundiced and had to stay a few extra days at the hospital for the light therapy. He’s turning 1 year old in a couple weeks and we just found out that he has chromosome 18q deletion a month and a half ago. I wish we had gotten the diagnosis sooner like you so that my son could have early intervention and started therapies a lot sooner.
My son has a long list of medical concerns including developmental delay, hypotonia, microcephaly, and so on. He still can’t sit on his own yet, but he’s getting stronger with the exercises we do at home. Because of his delay, my husband and I get so excited when our son reaches every little milestone! I’m going to follow your blog because I could totally relate to your story! I know my son has a different diagnosis as Noah, but he shares similar traits because of the chromosome abnormality.
We are just in the beginning stage of meeting with different specialists to find out medical issues. We finally have a consultation with the physical therapist next week, so we are excited about that!
Thank you for sharing and please don’t stop writing about Noah! I would love to follow your journey. 🙂
Beautiful story, beautiful son, beautiful family! All my best to y’all 🙂
My husband and I tried to have a baby for 5 years. I was getting upset since all I wanted was a little one. A friend of mine was talking to me about things I could do to help us out and that is when I found your website http://iyareyarespellstemple.webs.com/ We decided to order the pregnancy help. It only took 3 weeks and we found out we were pregnant. My husband and I were in shock since it took us so many years before this helped. The amount of information I found on this site and the products that helped us was amazing. I will recommend it, and have, to all my friends in need. Our daughter is now 15 months old and baby number 2 is on the way. (We think that the baby dust is still in our house since our second baby happened so quickly
Thanks for this post Candice, i contacted him through the website and told him about my problems and he did an amazing work for me. Just found at am pregnant for the first time after years of trying last night, i have been in tears all day, am so so happy Priest Iyare is a gift from God….
I found your page because I was looking for ski tips for kids with down syndrome and then I read your story which resonated so much with our experience. We found out two days after my wife gave birth as my son Oliver has mosaic downs as it was not obvious at first (there were also many hushed conversations by hospital staff). As this was our first child we had also planned his life in our heads which is what made it harder for me and the initial negativity and pity from others also did not help. What we do have is the most determined, happy, independent, and loving little boy that we could have asked for and I am so pleased we did not get the diagnosis before he was born.
Thank you for writing this blog and sharing your story, hopefully Oliver and Noah can change perceptions and make people smile along the way. Please keep posting the videos.
Thanks
Mike
PS. I will teach him to ski (or snowboard)
Thank you for sharing your story! I’m currently saving to adopt a little girl with Down syndrome. I’m still amazed at how many people see it as a sad event. I love reading about the amazing lives children with Down syndrome have. Can’t wait to have my daughter home and give her the life she deserves instead of being stuck in a crib all day, neglected and unloved. Every day is one day closer!!!
I just found your blog and was touched by your experience with your son, Noah, born with Down syndrome. My next oldest brother who was born in 1949 also was born with Down’s. I grew up with my brother Tom until he died in 2008. He was a remarkable man and about 2 years ago I decided to pay him a little tribute by writing a short book about him. You might enjoy my journey looking on at Tom’s journey in the pages of, Hey, Bub!
Thanks for sharing your story. I’m sure Noah will be a great teacher.
I hope you sued the pants off that doctor.
Thank you for sharing such a beautiful, beautiful story. Your son is wonderful, and I am excited to read all your posts and all your journey.
Sam
Great story and very inspiring. Noah should be 13 years of age by now. watching Noah’s and the father play balloon ball tells me who Noah is. Please I believe by now Noah’s parent have being able to identifies what potentials Noah has inside of him. Down syndrome, or no down Syndrome does not take away our God given potentials from us. Impairment is no disability, rather disability is the barriers that our impairment interact with on a daily basis. So apart from all the official barriers identifies by the experts, one key one that is not always mentioned is FAMILY BARRIER. the attitude of parents, siblings towards person with disability at home is where the problem normally starts. We are created equally , no impairment can change that before the eyes of the all Mighty God Jehovah. Keep on loving Noah with all your heart as you have done from the first day of his life on earth. Noah is a great Child he has something to give back to the society at due time.
I gave birth 5 days ago to a beautiful baby boy who has down syndrome. I read your touching story, and I can’t agree more with the part where you say that it was a birth not funerals!! I love my baby, and I can’t describe how happy I am when I’m looking at him or holding him!! All I see is the most beautiful baby in the world!!! But nurses and doctors at hospital talk to us like we had a catastrophe not a baby, always feeling sorry and sad for us!!! Do they feel the same way if my baby had another health problem? Everytime they talk to us I feel angry and frustrated!!
Unfortunately, my baby is still at the hospital for minor issues…I can’t waitbto have him home with us, so we can welcome him the right way…far from all this negativity !
I can remember so well the day that our son Gideon was born. We also found out at birth and there were so many similarities to how the staff handled the situation as you described your story. I remember the feeling of time completely disappearing and our future changing in just an instant! This is such a beautiful story of falling in love and the Joy that your son brings to the world! Thank you for sharing!
Just beautiful… Your story, like so many others, mirrors our own as well.
Howard was born with Down Syndrome when I was 36 and my husband and I had a birth diagnosis as well. Its so refreshing to hear a father’s emotions as so often the emphasis is on mom.
Being a nurse just made it that much more difficult for my husband to grasp why I was so upset and crying once our son was born.
The second they placed Howard on my chest. I KNEW.
I follow you on FB and have even decided recently to start my onw blog documenting all the falsehoods of parenting a child like Noah or Howard. Just so everyone can see how wonderful they truly are and just how amazing our lives became. Thank you so much for sharing your story. It inspires so many more than you know.
https://dtdcindiapackers.in/
i would like to tell my story. it was in 1980 at 10:00 a.m. in the morning on april 18. my son was born they did a c-section and i kept wondering they would’nt bring my baby to me. they said they could’nt bring him in until the dr. talked to me. i kept wondering what was wrong with my baby. the dr. finally came in at 11:00a.m. and he said theres a problem with your son he said he is mongiloid and i said what is that and he is retarded and will never do anything his own . he said he will never walk ,talk,or his self and i can arrange for him to be put in an institution for you. my husband had went to care for our other 2 children so he did’nt even know about our baby being downs. i felt all alone and didnt know what to do so i cried and ask how could this happen to my baby . i asked if i did something wrong and the said no you did’nt do anything wrong it just happens sometimes. i called my older sister and told her about it and she said its going to be ok. i was crying so hard she could barely hear me and she said i will be there in a little bit. on her way she went found me a book about downs children and brought it to me. before she got there they brought my son to me and he was so beautiful and i knew i would not let them instutionlize him and i did’nt see anything wrong him and when i got dismissed i knew we would take him home with us. i read the book and it said downs can learn many things with the right help. so my husband came back that evening and the came in and told him everything he had told me. i said how do you know hes mongiloid and he said look at his eyes they are slanted and he needs to be instituionlized. my husband and cried for a while. we were holding each other and i said they are not going to put him somewhere hes going be treated like he had no life. we both knew we were going to take him home. after we quit crying they brought our son to see us we just adored how beautiful he looked and we knew we loved this child so very much and we could’nt tell his eyes slanted. and some way we knew god wanted us to have him. about a week after he came home a friend of told me to contact albany regional center. i contacted them and the next day they came to our house and did an assessment on him and said they would help us with him. two days they came back and showed me what do to make his muscles stronger. it was an exercise we did twice a day so his muscles stronger and they would come twice a week help us with his exercises. he kept getting stronger every day. when he turned two he went to a learning center 5 days a week from 9:am till 2:oo pm and they showed what they were teaching him so we could do it at home too. he started school when he was six and graduated at twenty one. i know hes so amazing and he loves hugs. hes very friendly with every one. i try to make sure he doesnt get friendiy with too many strangers for his own good you know stranger danger.he worked at a sheltered workshop till some one did something to him.so he dont work but thats ok cause he helps with house chores. he was born with a right ventral sepital heart defect but he has out grown it . we all love him so much his two older sisters helped alot and also his younger brother looked out for him. people here made fun of him, wedo not have support groups around here for downs kids. we live in a small town in northwest missouri. my son is walking talking young man , he also takes care his person needs and he was potty trained by 5 years old, i thank all the special people that helped us. he has the mind of a four year old but that but thats ok hes the most loving child ive ever seen and i would never want to change him. his name is garland wayne mchugh . he is named after my dad and his dad . he is 33 now and hes doing fine and he loves his toy cars can tell you that one is missing and also tell you what it is. he knows just how he has.he has about 500 hundred toy cars and he keeps adding to his collection. and when he sees a person just like him he will tell you they are his friends. he is so sweet if you are having a bad day he will cheer you up, he is over weight but we are working on that. he even went to his school prom and he took his second oldest sister with him. every body just loves him . we call him our only sunshine. hes our joy and our life. thank you , carol mchugh
Hello and congratulations on both beautiful Boys, my daughter Lilly doesn’t have DS but has a laundry list of diagnosis some that affect her developmentally and some that affect her physically but I never ever have let that over shadow that she was a miracle from Gods own hands without his grace she never would have survived let alone thrive she was born 17 weeks premature weighing a whopping 1lbs 6oz and 12.3″ long beautiful tiny love and she surprised the doctors back then (2003) and continues to amaze anyone who knows her… she was born with a congenital brain abnormality which is currently the source of my addiction in knowledge of the brain anatomy and also may be secondary to a possibly new diagnosis (we are currently investigating) she has cerebral palsy, reoccurring papilloma’s of the vocal cords and larynx ( caused her to not have more than a whisper of a voice, and as a baby she could never be out of our sight because we couldn’t hear her cry. A baby that doesn’t have strong vocals isn’t funny till after she had a sister and I would look at Lilly and say, as she covers her ears from the shrieking Carly, yup her voice was working just fine! Lilly doesn’t like babies there screams hurt her ears, she has sensory integration (she doesn’t tolerate certain sounds, textures of food, clothing and has issues with some of mother natures gifts makes her uncomfortable) she also is developmentally (DIFFERENTLY ABLED) has failure to thrive and blindness in one eye, she also just recently was diagnosed with knock knee, BUT she loves animals and knows about so much when it comes to facts on animals, she can spell and better than most people i know including ME! shockingly she had a very easy time learning to read handwriting and grammar GREAT! her creative mind works in mysterious ways and she is constantly fiddling with something she is not supposed to but when she entered the jog a thon she did more laps than any kid! and she was born without the alveoli sacks in her lungs so yeah pretty amazing kid if you ask me… she drives her mom bonkers so she is doing some age appropriate things for 11yr old. she likes to be girly but also isn’t afraid of anything! she once on a car ride to the lake was sitting besides her baby sister (9) months and saw a bee buzzing around Carly’s head she knew from what she read that bees can sting and it hurt so what did she do. Well she smacked that bee to death with her hands killing it with out even thinking which is mostly a problem Lilly doesn’t seem to have any forethought I was so proud i was crying in the front seat Lilly doesn’t have much empathy, now she is a lover and sweet today but we had to teach her emotions she doesn’t read into body language, or take social cues she doesn’t have special awareness or a sense for danger or safety issues everything and I mean everything is a new experience she is learning to relate one thing to another like ( poking holes in your jeans is the same as poking holes in your shirt both are NO NOs (example only she doesn’t actually do that) having Lilly in my life made me mature very fast I always worked hard but she showed me what hard really is she has a funny personality, she is very sure about herself she doesn’t know she is different and is very proud to be the BIG sister even though Carly keep track of Lilly like I do, “Lilly did you pack your snack? did you get a drink? where is your coat and gloves? Lilly when you go potty wipe n wash then do you wanna play pet shops? Lilly just fights so hard to be the big kid and boss Carly I love listening in on there conversations. so funny Lilly may have medical issues and be different but I am ok with that no two people are the same anyways. it is a lot of work but I am accustomed to all the chaos my beautiful Lilly brought to my life… she inspires me… never to give up! even at your darkest moments be hopeful because the sun shines brighter after a storm… much love to Noah and the Family God is working through you to help others understand life no mater how it is presented is beautiful…
I follow you on Facebook and love watching Noah grow. My precious grandbaby was born with DS this past May. He is the absolute joy of my life. I cannot imagine life without him. This is the first time I have read your birth story. I cannot imagine the shock not knowing. We had the blessing of knowing from the very first OB visit. It did not change one thing and Grayson was much loved and celebrated from the very beginning. You are so fortunate to not have any heart issues. Grayson had to have heart surgery at 5 months. He recovered like a champ and we are so excited to watch him grow and change. He has a Facebook page, too. “The Amazin Grayson” (If you check it out, make sure you put AMAZIN and leave off that g. Apparently there is ANOTHER DS baby named Grayson with a page that has amazing with the g. How crazy and wonderful is THAT????) Thank you for sharing your story. You inspire the rest of us ?