12 Things I Wish I Knew When I Found Out Our Son Had Down Syndrome

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Today is Noah’s first birthday! Wow…! It’s hard to believe it’s been a year since our son was born. It’s true what they say, time really does fly…and even more so when your a parent it seems.

Since Noah’s first birthday falls on a weekday, we decided to wait and have his official birthday party on Saturday to make it easier on Noah’s friends and family to come. (No one likes rushing to a child’s birthday party as soon as they get off work.) But as you can tell from the pictures and today’s video he certainly enjoyed his pre-birthday party! Not to mention he’s already had a pre-pre-birthday party! Does this kid know how to party or what?

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Our next post will be all about Noah’s first birthday party (and the awesome penguin themed party my wife planned) so today I thought I’d share a few thoughts about raising a child with Down syndrome a year into our journey.

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It’s been one fun year!

The day that changed our life.

It’s hard to believe it’s been a year since our wonderful pediatrician came into that cold hospital room where we were waiting with excitement to see our little boy and told the news that would forever change our life:

“Your son has features that are consistent with Trisomy 21.”

In other words; Your son has Down syndrome.

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We love this little boy!

If you’ve read Noah’s birth story, you know that our son’s Down syndrome diagnosis was a total surprise to us. We had no idea our son had Down syndrome until a few hours after he was born. We thought everything was perfectly normal and they were just giving him the world’s longest bath as we waited for the nurse to bring him to us. It turns out they were actually just trying to reach our pediatrician (it was after-hours) and wait for her to arrive at the hospital so she could be the one to break the news to us; which I describe in more detail here.

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I’ll never in my life forget those few minutes when our pediatrician told us Noah had Down syndrome. It was like everything went in slow motion. I couldn’t speak (and if you know me, you know that’s a rare occurrence for me.) I didn’t do what to think. What to do. What that meant for our son. For our family. For our life. I was scared. In fact it was one of the scariest moments of my entire life. (Little did I know things were about to get a lot more scarier.)

A crash course in parenting…and Down syndrome.

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I think he enjoys birthday cake….

There are so many thoughts going through my mind as I write this post one year later. So many things I want to say, but again I find myself sort of at a loss for words. I’m overcome with emotion as I reflect on the last year and how our life has changed (in a good way) because of our son Noah. We had a few scares over the last year, learned more about Down syndrome in the last year than most people learn in their life time, and most of all; we’ve had a blast being first time parents! I mean seriously, I knew I was gong to enjoy being a father, but this is ridiculous. I absolutely love it!

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And as for all of those parenting fears I had when Noah was born; they’re long gone. Noah having Down syndrome has just sort of faded into the background of our family. It’s our normal. Noah having Down syndrome is the same as me having green eyes, or two hands. It’s just him. No biggy. In fact the only time I really think about it is when we have to go in for a CBC, those still scare me…but that’s another post for another day. :)

There is no parenting time machine

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I love that little hand.

I’ve mentioned before there is no such thing as a parenting time machine so I can’t go back in time in tell myself things I wish I knew at the time. It’s impossible. However, maybe I can be that time machine for someone else.

Today on our son’s first birthday I’d like to share a few things I wish I could go back in time and tell myself when we first learned of our son’s Down syndrome diagnosis. If you’re a new parent of a child born with Down syndrome consider this your parenting time machine and that these words are coming from your future self. :) (I’m so strange….)

If you are a new parent I’d also encourage you to check out this post with over 300 suggestions of what to say to someone who has just received a Down syndrome diagnosis; it’s jammed packed with encouragement from other parents raising a child with Down syndrome.

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A quick disclaimer: When Noah was born everything I knew about Down syndrome I learned from watching TV, seriously. So remember that these statements are from the perspective of a total rookie to the Down syndrome world. Like I mentioned before I know much more now than a year ago. :) Also I was going to go into detail on each of these statements, but the post is already pretty long as is. If you have any questions on what I meant by any of them please be sure to leave a comment and I’ll elaborate.

12 Things I wish I knew the day our son received a Down syndrome diagnosis

1. Noah being born with Down syndrome doesn’t mean he’s sick or unhealthy.

2. Noah’s not going to be a vegetable. In fact, far from it.

3. Noah’s going to laugh and play just like every other kid.

4. Noah shares more things in common with a child without Down syndrome than differences.

5. In a few weeks your son having Down syndrome won’t be a big deal.

6. You’re going to have the ability to make a huge impact in the world.

7. Your going to have so much fun with your son. In fact, you’re going to have even more fun than you ever imagined!

8. You aren’t alone.

9. Your didn’t just exchange a happy story for a sad one.

10. Other people’s stories aren’t your stories.

11. Stay off internet.

12. You and your family are going to be just fine.

Whew….that’s a mouth full, huh? (See, I told you I’m not normally short on words!) :)

There are so many more things I could say about each of those statements, but I think you get the idea.

If I could just say one thing…

In fact, if I could go back in time and just tell myself one thing when I first learned Noah had Down syndrome (which would pretty much just be a summary of all of the above) it would be:

Rick, things are going to be just fine, trust me. This next year is going to be the best year of your life. I know it doesn’t feel that way now, but trust me on this one!

And today, one year later, on my son’s first birthday, I can confirm 100% that the above statement is true. This year truly has been the best year of my life. There are no words to describe how much I love my son and how much joy he brings to our life.

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I love this kid!

I love every second of being this little boy’s dad!

 

What’s one thing you wish you could travel back in time in tell yourself when you first had your child? (Regardless of if they were born with Down syndrome or not.) Please take a second to leave a comment and let us know. Don’t forget your comment could be just the thing that someone else needs to hear!

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About Rick Smith

Hi, I'm Noah's Dad and I'm passionate about giving the world a window into our life as we raise our son who was born with Down syndrome. I also enjoy connecting with other families, so let's stay connected.

Comments

  1. i have been following noah’s story for a while now, he is such a happy boy and absolutely gorgeous! … i didnt know my daughter had ds untill she was born (infact she was 1 day old when they told me!) and i was on my own, they didnt call my family first or anything … but now she has just turned 1 and i wouldnt change her for the world! it has been the best year of my life, yea i still cry but who doesn’t ? x

    • Billie Eagan says:

      Happy 1st Birthday Noah

    • Nicola,

      Congrats on your little baby girl! What is her name? And where are you guys from?

      Thanks for saying hello by the way! :)

    • Pam Mighaccio says:

      My son with DS is now 35 and happily married to the love of his life. They have a condo about ten minutes from us. Their condo is within walking distance of lots of fast food & good restaurants, shopping centers and movie theatres.

      Let me go back to the beginning. Mike was a total surprise all the way around! Originally I was told I could never have children, adjusted to that; found out I was pregnant and adjusted to that; then had Mike and that was a real shocker. But, when I looked into that cute little face, I was a goner and knew that we would do the best we could to help him become as independent as possible.

      We do have a wonderful parent support/education group here, Exceptional Parents, Utl. which was a life saver! As Mike got older, we almost forgot about the DS and concentrated on the little boy he was. Now, he is grown up and a very thoughtful young man. He has taught us so much about love and acceptance, I wouldn’t trade this for anything in the world!

  2. Happy Birthday Noah xx

  3. Happy b day noah
    ok so I know its almost his seconed b day man time flies so fast

  4. I think I felt like the idea I had in my mind of what being a parent was like would TOTALLY change. There are some differences, extra therapists and doctor’s appointments, but 99% of the time it’s exactly how I pictured being a Mom. In fact, some times are even better! Lila being born with DS 7 months ago has taught me to find joy in life’s unexpected journeys.

    • I couldn’t have said it any better myself. :)

      Do you guys have any other children?

      • Sharon Freedman says:

        I worked with a girl who was down syndrome she was totally amazing lovable funny ticked off her work list i learned so much from here it was a beautiful experience and i have such a loving feeling for Noah! I love following the story.

  5. Happy birthday, Noah!!

  6. Susan Karalias says:

    Hi Noah’s Dad!

    Love your facebook page/blog!! You are amazing:) Just wanted to say that I do not have a child with ds, but I am lucky enough to work with children with ds (I am an Early Intervention specialist for hearing/sign language/speech). My husband’s cousin gave birth to her son with ds 9 years ago. It was a complete surprise just like your darling little Noah. It was total devastation for the Mom, Dad and entire family (except me). I told the mom exactly what you said……”I know you don’t feel it or see it now, but everything is going to be fine and you are going to love that little boy like MAD”. To this day, his Mom still talks about it, apologizes for her initial reaction and says the love she has for him is ginormous!!!!!

    Just wanted to share……………Susan from Boston:)

  7. Hi Rick,

    Happy first birthday Noah! I am so happy to share this special day with you. My son, Nolan, is 22 years old. I remember his first birthday and the many milestones achieved since then. You have given some very important thoughts regarding the initial journey of your son’s life. I would like to add a few additional things that have helped us along the way.
    1. Embrace the gifts that your son or daughter possesses. Each of us have been put on this earth for a reason. Look at what the areas of interest are in your child and find teachers, coaches, friends that can help you in developing those gifts.
    2. Prepare now for what lies ahead for his educational years. YOU are your child’s advocate. Speak out for what you know is best for your child.
    3. Dream big, but don’t forget to tweak. Perhaps you son or daughter might not make it on the varsity basketball team that you initially thought they could achieve, but with a few tweaks, you may find that your son/daughter will be a leader in the special olympics games.

    This past year my son graduated with his high school class. Seeing him walk across the stage to get his diploma was a reminder that we are only on the beginning chapter of his incredible future.

    Nolan has started his own business making jalapeno jam. He is known as the Jam Man around our community. Tomorrow he will begin his production in a commercial kitchen. He grows his own peppers and crafts each batch of jam. He listens to Bob Marley as he cuts, mixes and makes his jam. I wish the same success to our trisomy brothers and sisters. If I can ever be of help to anyone who is looking for assistance with transitioning or the ard process, I would be happy to do so.

    • Jennifer says:

      As a new mommy to a precious 8 week old with Down Syndrome, I love stories like this! They are so full of hope and strength and encouragement! Thank you for sharing!

    • Leigh Ann says:

      What a wonderful testimony of the power of one life to do something fantastic! Thanks for sharing!

  8. If I had one thing I could go back in time and tell myself it would be to relax and not care what people would have to say about me adopting 3 children at one time who are all of different races yet born from the same mom (a hooker). I regret feeling like adopted children were my 2nd choice (I had complete infertility) and I regret not giving my friends and family more credit for how they might respond. Somehow I feared they would see my adopted, multi racial children as misfits. But I was so totally wrong!!! Every where we go my kids are loved and excepted as my own and race never comes up. I realize now it was just fear and selfish pride that got in my way. I’m so glad my husband was wise enough to push forward in bringing them home. I don’t know what I would do without them!!

  9. Lisa Morgan says:

    I wish I had a crystal ball back then as now I know I needn’t have worried about a thing my girl is doing great amazing all she meets brightens up evey room with her infectious smile and amazingly big heart she has taught me the meaning of life and has made our family complete!

  10. My son was born 15 months ago with DS. Weighing in at 3lbs and with a condition me and my wife knew nothing about….it took us a long time to begin coming to terms with everything. At one of our darkest times, whilst he was still in the ICU, I told her that Adam was going to face his challenges, but our boy was gonna change so many people’s lives, in so many ways. True to form a year down the line, everyone who knows him, remembers him, and loves him. They also understand a little more about themselves as a result. He is a remarkable individual little boy, and I am very, very proud of him.

  11. Cheryl Strauss says:

    Happy 1st Birthday Noah!

  12. Happy birthday, Noah! It looks like your really enjoyed your cake. . . Rick, we have a very similar birthday story. They kept Ellie away from me saying that they were really backed up on giving her a bath. There were only 3 babies in the nursery. Uh huh.

  13. katy christie says:

    Happy Birthday Noah! I continue to be inspired by your blog. My son Matthew who has DS turned 8 months yesterday and celebrated by saying mama for the first time :-) loving motherhood. Yes there are bad days but what mum can’t say that x

  14. diane stephenson says:

    im so glad i came across ur story noah is adorable i can relate to ur story i have a great grandbaby who is down syndrome we had no clue before he was born the first couple of years were rough but landon just turned four and is doing so well he lives with me and his pa paw and cannot tell u what a blessing he has been to us hope u enjoy noah and r as thankful for him as we r!!!

  15. Happy Happy birthday Noah and Rick thanks for sharing your families story with us

  16. maddison jacobs says:

    i LOVE LOVE LOVE that video he is so cute n yes he knows how to party love the pics of him smiling he is such a ham for the camera happy birthday noah .

  17. mary imhof says:

    i have a 23 year old daughter with down symdrome. i was asked if i was gonna keep it when she was born. dont ever let down syndrome define your child. they can do anything they want to do.

    • Wow, my baby is only 2 and we were asked the same thing. Of course I was keeping him hes MY BABY was my reply.

  18. patricia says:

    our children are amazing!!they are beautiful like angel and i agree with the 12 things..HAPPY B-DAY Noah from me and rhe italian Noah!!

  19. Happy birthday, Noah! Hugs!

  20. Happy 1st Birthday Noah! Our son Gavin will turn one on Tuesday and we too will be celebrating his big day on Saturday. As I reflect on this past year as well, I feel blessed to haven been given such an amazing gift. Thank you for shaing your story and giving so much hope to others.

  21. Happy Birthday Noah!

  22. melanie says:

    My daughter was told with my granddaughter while she was pregnant the babies heart looked like it could a child with downs syndrome. She was worried and devistated. Having grown up with a cousin who was retarded from lack of oxygen at birth, not downs syndrome, I was not fearful. I knew if this child had this syndrome it was not a bad thing. What I told her is we will all love this child for who it will be. That if the baby turns out to have downs syndrome, it only meant we would all be showered with so much unconditional love, because they are very loving. And how can being a happier than normal, more loving and affectionate human being be a negative thing? We love our children unconditionally, if God sees it to send us a special child to brighten our lives, we then will be the lucky ones.

    Our Mia did not have downs syndrome and is a typical “mine monster” at 2, not wanting to share anything with her baby brother.

    I still believe your child, all children with special labels are special to our hearts and can bring so much joy to our lives. I think back and I know from being raised with my cousin, she had so my love to offer and the lucky ones were the ones she showered it on. Some people back then were so uneducated and rude for they thought different was not a blessing now could not see how special Taci truly was. I feel sorry for those people.

    Bless you and your family. For you have seen the joy in this special child God saw you needed! And Happy Birthday Noah!!!

  23. Kyle Anne Uniss says:

    Rick,
    I have a beautiful seven old with DS and my experience was so similar to yours. We had no idea until she was born, we went through a few hours of shock and then seven years of AWE! She has been the light of our life and a wonder, and, after about six month, I wondered what all of the worry was about (that first day). Noah is beautiful and happy. Congrats!!!

  24. Diane Husar says:

    I just love your #9 comment…there is so much joy in raising a child, and the Ds doesn’t change that fact. We are almost celebrating year 5, and it just keeps getting better. Thanks for making the world more aware…you are doing a wonderful job of it.

  25. #11 is so true, it isn’t even funny. And even though I know that, I still do it anyway lol :P

  26. Julie Walker says:

    Happy Birthday Noah! If there was one thing I wish I would have known 3 years ago, when our little James was born, it would be that it really will be OK!! It’s not the end of the world. ( like I thought it was) & that our little guy is the best thing that has happened to our family. God does in fact know what’s best for us. (& I would insist on getting an Echo done on his heart BEFORE they sent us home! It would have saved us from almost losing him at 8 weeks old)

  27. Bethany says:

    I just finished 2 books, Expecting Adam(a woman’s story of expecting her son with DS) and Reflections from a Different Journey(essays by adults with disabilities). I learned from the first that I am glad I didn’t know that Colton had DS before he was born. Even after grieving, it doesn’t take long to figure out that you love your baby more than you could ever imagine. I would have worried more knowing. I definitely recommend the 2nd book to anyone. These extraordinary individuals have a lot to teach all of us about how to treat others.. and a few have great ideas of ways to deal with people who aren’t quite kind. (if someone stares, stare back, and then say hi!)

  28. As a mom of a 13 month old boy with DS…I would say it may be scary now but it will get better and you will love this child like no other…Luckily my son didn’t have a heart condition but he did have other issues and DS was the last thing I was thinking about. Our children are the sweetest most loving children. I couldn’t imagine my life without him.

  29. Beth Pruitt says:

    Happy Birthday to Noah and God Bless You and Your Family! People need to hear your words of encouragement. I have a 14yr old son w/DS. Although we knew before he was born, hearing the news that our child had DS was extremely scary. It was a different future than what we would have planned for our family, but now I can’t imagine anything different. It is our normal and life is good. Daniel is a precious gift, just like every child is to their parents. The one thing that I have thought about so many times, is that w/the news of his DS – they also offered us the option to terminate the pregnancy. I am so thankful that was never an option for us, but I’ve thought so many times of all we would have missed, had we chosen that and how so many people would be tempted to b/c DS is scary. You wonder if you can raise a child w/DS – if it’s wise to even try……..Best of everything to Noah and your family!

  30. I recently had a son with ds, just like u it was a total shock, being told that day I felt like I’d lost my little Jacob and was bewildered by thoughts of how our future would be .. But now just 3 weeks on I know it’s gonna be ok and reading your posts has helped me so much, I have the most gorgeous son and thinking back his blood results could have come bk with something a lot worse, even a terminal illness so yes, tday 3 weeks on I’m so glad I have him ds or not

  31. Rick, I love reading your blog about little Noah and your parenting journey. While I don’t have any children with DS, my younger sister has Down’s and is one of my absolute favorite people! She’s now 23 and very hard-working and independent. While she can be a bit of a stinker at times ;), she’s got a huge heart and is so full of joy. She’s my only sibling, so DS is pretty “normal” in our family too. I love reading stories like yours where families are able to embrace the “special” qualities of an individual with DS. Besides, we’re all a little special in our own way, aren’t we? :) Noah is very blessed to have such loving parents. I look forward to following along as your little guy grows up! And Happy Birthday, Noah! :)

  32. First I want to say Happy Birthday to Noah. Being a dad with a son who has D.S. I wish was like you when my son was born. I didn’t show it ( i think ) but i was so scared, stressed. But put on a strong front telling everyone its okay he’s going to be just fine, which by the way he totally is. I think between his mother & I we missed out on so much worring about silly little things, protecting him from situations thinking it was best for him. Boy were we wrong, he needs a guiding hand just like every other little boy or girl. Bryce lights up a room when he enters it. Its been a long road, Bryce never sat up by him self until nearly a year old, now he’s five going into grade one next year, mind you he has an awesome T.A. that works directly with Bryce when at school. Guess i,m kind of just rambling here, what i,m trying to say is I think your a great dad & know Noah has only just begun to brighten your life. Keep up the good work.

    • Thanks for saying hello, and for the kind words. I really enjoy seeing other dads who are leading and loving their family well.

      Your son sounds like an awesome little guy. Where are you guys from by the way?

  33. Oh my goodness,he is so cute! I just want to hug him. I know when I found out about Levi having down syndrome I was pregnant and so scared of the unknown. The specialist were not helping either. Levi also had ventriculomegaly. Which is fluid on the brain. They made sure to give us all the terrible things that could happen. They were so wrong. God knew what a blessing Levi was going to be to us. By the time he was born the fluid was within normal limits. Levi is amazing.

  34. My husband and I had a prenatal diagnosis of Down syndrome, so we went through most of the emotional distress before Max’s birth. Even though I had accepted the diagnosis before he came to us, I had no idea that Max would be as close to perfect as any child could ever be. I will never wish his Down syndrome away. He is more than I could have ever hoped for.

  35. Stay off the internet! Unless it is your blog :) My brother of 44 years is such a blessing. Happy Bday Noah.

    • Your brother sounds awesome! I was laughing when I wrote the “stay off the internet” part since ummmm yah, this is a blog.

      But I was really referring to all of the websites / message boards out there about Down syndrome. You can drive yourself crazy reading a million different opinions. At some point you’ve got to shut the computer down and go enjoy time with your family. (I’m trying to learn to do this more and more.)

      :)

  36. Rebekah Bateman says:

    Hi Rick,
    I wanted to share my unique “everything is going to be alright” moment. We received the news that we were having a boy (Yay!) and that there is an 80% chance he has Down syndrome (numb) at the same time – May 28, 2010. Sitting on the end of the ultrasound table, my husband in a chair beside me and listening to the “high risk” doctor talk about “soft markers” and something about his heart and just feeling more and more like I was drifting into a dream. My only conscious thought was “don’t cry, if you start you may never stop!” I vaguely remember saying ok every now and then and after a while they moved us to a consultation room and another doctor came in to ask us if we have any questions. I barely remember that conversation, still trying not to cry (but crying a little) and I had a million questions but could not figure out exactly what they were. Following this, there were days of sadness and fear, then research and less fear, and then during our next ultrasound (June 17, 2010) our son told us that everything would be ok. I wish I could post the picture, we were looking at the screen and clear as can be you could see his little arm from shoulder to hand. It was slightly bent, like in an arm wrestling pose, and he was giving us a solid thumb’s up (fingers bent thumb extended)! I felt immediate ease within and I knew no matter what happened our little guy was just fine!! He is now 20 months old and aside from the extra medical care needed (there was heart surgery, he is still on oxygen and currently has to be fed by a G-tube but we are confident that these are temporary issues) he is absolutely perfect! The fact that he has DS is just part of what makes him the truly exceptional little boy that he is – the boy we love with all that we are!
    Rebekah

  37. Rebekah Bateman says:

    Oh…and Thank You…I love the updates and especially the pictures of Noah! He is gorgeous!!! You are doing a wonderful service to the world sharing all of Noah’s abilities and the joy he brings you every day!

  38. Donna Langley says:

    How fun to see these pictures! Our son (who also has DS) is 4 months old, and it’s crazy how much your son Noah looks like our son. Very similar facial expressions, particularly the smiles!

  39. Enjoyed reading your post! This is my first time, but I am sure I will be back. The best advise I was given was from my Dad when my daughter was three or four months old (she just turned one). I was worrying over lots of things that I had read on the internet about Down Syndrome and relaying them to my dad. He asked if there were any problems right now. I said, “No”, he then said, “Just enjoy your sweet baby, like you have done with all the others!” I ran with it!! It was liberating for me… and now we have a blast just having fun with our sweet baby… who really isn’t a baby anymore. :-)

  40. Happy Birthday, Noah. What a beautiful little boy! My daughter was born with Down Syndrome and the typical heart condition 28 yrs. ago. She was my sixth child. I knew very little except for seeing one occasionally at the grocery store. I had no idea what a different world I would be introduced to. And what a wonderful world it is. Many kind people would go out of their way to interact with her and still do to this day. Her having DS made us that much more excited with each new accomplishment, which are many. We have learned so much through these years. Two of my other children now work with special needs individuals because of her influence. I wish I could have told myself that things would be okay-more than okay that day when the pediatrician came in almost apologetically to break the news. It has been a real learning experience for everyone who has come in contact with her. What an amazing ride.

  41. Jillian R says:

    This is the first time to your blog, but it won’t be my last! Congratulations.
    This post made me want to have another child.
    Speaking of which, if I could go back in time, I would have this to say:
    “Don’t be afraid. It will be tough, you will do it alone, but you will be the best parent for him and you will love him more than anything else in the world.”
    I’m going to go look at baby pictures and sniffle.

  42. jessika hanzalik says:

    All i can say is thank you. Thank you for your website. When a doctor told me about it…i said i didnt need it. But your page has made me so excited about falling in love with our Natalie. We also didnt know she was down syndrome. I cant imagine life without her. She is 2 months old and pretty darn healthy. She has gotten the heart of her 13 year old sister and has her 3 year old brother’s full attention. With tears in my eyes..thank you.

  43. Well,it’s a wonderful story,the same as mine.I have 3 childrens,my littele one,Reem has a D.S and she turn one year on 06/29.I love her more than anything.Especially right now,she is with my familly oversea….

  44. pavlina barbarisi says:

    Thanks Noah’s dad for sharing your story. Our daughter turns 3 next month and so much of what you say rings a bell, not least the hand comment. My husband often kisses her little hands and says, can a little hand be more perfect than this, this is how all hands should be!! We love her hands, and we adore her! best wishes to your family and your lovely little boy!

  45. Kendra lundsay says:

    Hi Rick,
    My name is Kendra. I want to thank you for sharing these wonderful moments with people like myself who might not understand exactly what all DS entails for parents.
    I have a 6 month old son who was born 4 weeks early, but other than that has been blessed to be a happy and healthy baby. However when I was pregnant around my 12-14 week at my second OB appt, my doctor asked me if I wanted to have tests run to see if my child could possibly have the chromosomal abnormalities of a child with DS… I, myself, was floored. I couldn’t imagine testing for something that was what he considered to be “abnormal”. I looked him in his eyes and said calmly please do not ever ask me that question again. He proceeded to let me know that they test for those “abnormalities” so that someone in my position could be prepared. After he finished I told him know that God gives people children with “special ABialities” because they will be with someone that can “handle” that situation.
    Noah is so very precious and God blessed your family with such a wonderful happy an healthy child!
    Congratulations to you and your wife, and again thank you for sharing your wonderful life with all of us.

  46. Catherine Sims says:

    I am almost 13 years down this road now and enjoyed your list
    Of what you wished you knew. There a few more surprises for you I think and here are some of my list from where I am now.
    I dont need or want to be like other kids. He is who he is and that is just his wonderful self.
    Don’t spend all your time worrying even about the CBC because it might never and often doesn’t happen. Worrying takes away from the fun and joy and times goes too quickly.
    I don’t see it as a profound journey and I don’t know if I make a huge impact. Really we are just a family living our lives each in our own special way. Not really here primarily to teach or anything like that more to live our lives to the full and if lessons are learned all round that’s great too.
    Sam does not have to be the best kid with down syndrome he just has to be himself.
    Down syndrome has always been the least of our worries.
    I get more hugs in one day than most people will get in a lifetime.
    Take each day as it comes learn from the past but don’t live in it and shape the future you want as much as possible. Take control but remember to let go a little or in my case a lot too sometimes,

  47. Margaret P. says:

    All that BS about “God’s special gift” makes me want to barf. You make it sound as if the world would be a whole lot better if every child was born with Down syndrome. And have you really convinced yourselves that you are better off for having your son born with this? What kind of god would go out of his way to create a child with this condition?

    My cousin has ds and while he is a lovable kid, let’s face it, if he had the choice he’d rather not have been born this way.

    • Hi Margaret,

      Thanks so much for your comment, and your transparency. I’m with you, I actually don’t like (or use) the term “God’s special gift.” (Not sure who you were quoting there.)

      I think all people are “gifts” from God, created in His image. As far as “better off” because our son has “this” … I’m not sure what you mean by that. Our family is “better” because of our son, yes. As you can see in our posts we have a blast with him. He makes our life more fun, there is no doubt about it.

      Has your cousin told you that he wished he had not been born with 3 copies of his 21st Chromosome, or is that your assumption? There was a study published last year that says that 99% of people born with Down syndrome are happy with who they are, so it seems that almost everyone with Down syndrome wouldn’t change who they are. http://www.lifesitenews.com/news/99-of-people-with-down-syndrome-say-they-are-happy-so-why-are-most-downs-ba/

      When you ask “what kind of god would go out of his way to create a child with this condition” I’m also not sure what you mean. He is the same God that created you when He didn’t have to. He loves people. All kinds of people. People with blue eyes. People with green eyes. People with black skin. People with Down syndrome. People who like to come to blogs and leave comments. People who like to come to blogs and leave no comments. He loves us all the same.

      Pretty awesome in my book. :-)

    • Your comment Margaret wants to make me barf. Seriously? Every child is a gift regardless of what they look like, their health, their abilities, etc. You make it sound like if a child has a challenge, they aren’t as valuable as a child that does not have a challenge. I don’t think this couple is saying they are better off. I think they are being open about their journey of acceptance and faith and that’s a beautiful thing because at the end of the day, they are just as blessed with this child as they would be with any other yet many don’t feel the same way. Many people would immediately abort a child whose prenatal tests indicate they “could” have DS…I say “could” because screenings are not infallible. What does that say about those “parents”?? Even if the tests are correct, why would anybody think babies with DS don’t deserve the same opportunity at life and love as any other child? I have no doubt that Noah has blessed everyone he has touched and there are people who would not be the same having never been touched by him. I’m so glad Noah was blessed with the parents he was…ones who have plenty of love and faith to share with him and with us because of it. I have no doubt Noah’s future is going to be full of endless opportunities because he has parents who don’t see him as anything other than their beautiful gift they love and are thankful for, no differently than I am for my children. The world will be your oyster Noah…you just keep sharing those beautiful baby blues and that infectious smile of yours!! I wish I could meet you because I would have lots and lots of hugs for your adorable little self!! <3

  48. Hey Rick,
    you are such an inspiration of positivity and love! I had my first son 7 months ago… and I feel like everything new is scary and crazy (hello! I can’t even give him food without freaking out that he’s choking!) I am sure it was hard to hear that Noah had DS, especially when you weren’t prepared for dealing with it. But EVERYTHING gets better once you see how beautiful, fun and normal your child is. Noah is so adorable and I am so glad he got such an awesome dad! Happy birthday to your little man!

  49. What a wonderful testimony of parents persistence, dedication and LOVE to their son! Some people think that down syndrome is a disease. Well done to baby Noah and his parents!

  50. Matilda says:

    I just wanted to express how much this blog has helped me. I am 13 weeks pregnant with my first baby and recently had a prenatal screening. My results came back fairly high for our baby having down syndrome (1:225) given I have just turned 27. I was so saddened getting this result but reading your blog has made me realise that if our baby has downs sydrome it will be just as amazing as if he/she doesn’t.

    • Congrats on being pregnant!!! I hope you are starting to feel better, the first trimester was exhausting for me. I am glad in are seeking out information on Down syndrome and finding positive information :). I think that it is important to remember that your test is not positive or negative just giving you a percentage (which in your case is much less than 1%) so I would continue to enjoy your pregnancy and try not to worry too much :) keep us updated!!

  51. Jonathan S. says:

    So happy to see how much of a blessing Noah is to everyone! My son Cayden has down syndrome and he turned 5 back in Feb. He has had speech and physical therapy since day one. He is now entering his 3rd year in developmental preschool. He is able to communicate with sign language and speech. He is the happiest kid I know and reminds me daily how much God has blessed us. I wouldn’t change a thing. He truly is perfect in my eyes and has been able to teach myself and many others that if you invest in your child that can overcome anything. Cayden will be 6 years old when he enters kindergarten and be able to go into the classroom just like every other kid. There is nothing your child cannot do it just takes time and dedication to teach them and invest in their future.

    • So glad that your school experience has been good. It is one of my future fears as you hear both good and bad things. I am so excited that your son will be mainstreamed and likely do awesome based on what you are saying :)

  52. Hi Rick
    I know I’ a bit late (only just discovered your blog) but Happy Birthday Noah! My
    Iittle boy is 6 months now and is totally ace! Such a tough fella, gone through surgery twice and is now ok. He is a complete flirt and his Dad is quite jealous of his ability to attract women! Thank you for writing this blog, it has made me smile.

  53. Liz Hird says:

    Hi Rick!!
    I just love your stories about Noah! He is such a cutie!! My son Liam is 6 months old and a twin. He has the best giggles and is a sweet boy. I wish that I could go back and tell myself that everything will be great and that Liam will bring a joy to your life that you never would have imagine. He and his siblings brighten up my days and has encouraged me to take care of myself, so that I can take better care of them. Keep telling your amazing story!! It is soo uplifting! Thanks for that!!

  54. Rick, my son is 13 months old and he looks like your son…. They are very handsome little boy and stole their parents’ hearts…. My husband are still sometimes sad when he thinks about our son has down syndrome…. I don’t know what to do to help him not to think it is sad thing. Both of us really love our son no matter what he got…

  55. Our son Jamie is 4weeks old we had no idea about his ds like yourselves. I just want to say a big thank you for your positivity and fantastic posts they have helped me through this and I am hoping to use your experience and information to enjoy our child to the max without stressing too much about things. This particular post has been absolutely the best thing I have read though.

    happy birthday Noah
    Leanne xxxx

  56. I kinda wrote 6 thoughts I have learned being Pip’s mum…Along the same line- Great advice…
    http://www.happysoulproject.com/2013/06/6-thoughts-for-6-months-as-special.html#.UnRGL_nMB8E

  57. Even writing it seems silly now, but when our son was born (nine years ago!), I was so scared. I had thoughts like “I don’t know how to raise a child with DS. How will I teach him to talk? To walk?”. Getting started being his mom was a bit scarier than with my other kids mainly because he did have ASVD and had a repair at five weeks. After getting past that . . . He truly has been no different, no harder, than any of my other children. He is himself. He has things that came easy to him, things that have been harder. He gets therapy, so does my seven year old for speech. It took him longer to talk. He has days hes really happy and days hes grumpy. He has days where he acts like an angel, and days where he is just as rambunctious as his brothers. He runs, jumps, climbs, sings. . . He has done everything that his brothers and sisters have done, in his own time. I wish I could go back and tell myself to relax, that he would be just fine. I wish I could have shown myself a picture of him now, with his huge smile, trick or treating, all dressed up, and thanking each person for the candy he got. I wish I could have shown myself a glimpse of our daily life now, where the words down syndrome are so rarely spoken, because it just doesnt matter, because he is so perfectly himself and is just one of the gang. The last thing I wish I could have told myself is that there is so much help out there, so many people who have been there, who know just how to help you through any thing your child might need and to help you come to the point where you realize you really don’t need all that much help, because he’s just a kid. I wish I could go back. There was fear where there did not need to be. And truly, if my son didn’t have DS, he wouldn’t be the same person. And I would miss the person he is right now So Much. Thanks for what you’re doing here. You have a gorgeous little boy. Happy Birthday, Noah!!!

  58. valery, mother to extra special baby g says:

    if I could travel back in time, I would have treated my son’s day of birth as the happy, joyous occasion it was supposed to be. (his DS diagnosis was a surprise. as soon as they put him on my chest, though, I knew!). also, I would have stayed off the internet because the “information” out there is depressing and isn’t a handbook on what my child is going to be/do. lastly, I would tell myself that, yeah, my son’s diagnosis sucks, but i will have a love for him that i have never experienced, that i will feel a protective, mama bear urge that i didn’t know i possessed.

  59. Kelly Hatt says:

    I have an 11 year old daughter that had a stroke inutero and has right sidedhemiplegia (a form of cp).If I could go back I would enjoy her more and stay away from all the therapies and doctore 3 times a week!! Kids grow so fast and we have to enjoy every minute that we can!!

  60. John Junior says:

    Hello Rick, I´m from Brazil, and a week before my second daugther, Lorena, was born with DS. Like you, my family and I didn´t have idea about it. We were completely shocked. But yesterday when I read your history, It gave me a lot of strenght to keep my mind clear and ready to do the best job for my little baby. She is still at the hospital (ITC), because she´s only 1.9kg, and also have genetic scoliosis, but until the moment it´s not a big trouble for her. She doesn´t have any kind of heart disease and her metabolism is perfect. So, I apologize for any mistakes on my write, but i need to say thanks a lot!

  61. I just started following you and enjoy reading. My cousin is 11 and has Down Syndrome. I’m extremely close to her.. She calls me her sister. Being 22 years old and read different story’s about Down syndrome is enjoyable. At least the positive ones. My cousin impacted me so much that I am attending eastern Michigan university to become a special ed teacher. :)

  62. Our little Miles turned 6 months old today and every day is has been such a joy! As I read your post, there are so many similarities in our experience. It means the world to hear stories of other families and feel a connection – no matter how far we roam, we are all connected by our special little ones.

    While reading your list, I felt like I could put a check mark next to everything. There is one thing that I would proudly add. As much as we guide, love and support our little ones, it comes back to us a million times over. I’ve learned more from Miles in the 6 months he came into this world than I’ve learned in my entire lifetime. He’s taught me unconditional love, compassion, gratitude and what hard work and encouragement truly means.

    Thank you and especially Noah for sharing your life with us!

  63. Hello Rick- I love your blog and your sweet boy Noah. I have a 1 month old boy named Kasen. He was born with ds and we didn’t know until he was born. He was in the NICU for 2 weeks due to his platelets being critically low, he also has a PDA, had meconium in his lungs and has chronic pulmonary hypertension. I’ve been told that a lot of that is normal in babies with ds? Is that true? He’s doing so much better but still on a very small amount of oxygen. By the way…I have a 7 yr old boy named Noah as well, GREAT NAME!

  64. First, Happy Birthday you beautiful lil man! Second I totally agree with all the things you said, that would have been awsome to know about my son before birth as well, Would have been a heck of a lot better than what I got instead! They gave us little hope for our son, but Im happy to say BOY WERE THEY WRONG! lol I love reading about Noah, thank you so much for the things you post!

  65. I can tell all you new parents that it only gets better! My Janet is now 39, happily living in a group home with her friends, which she LOVES. She’s employed, has a rich social life, and is a delight to be around. She’s thankful for whatever we give her, never demanding more. She enjoys our company (and I’m delighted when she decides she’s had enough of us and sends us home!). When we’re sick, she’s our biggest sympathizer (you should’ve seen her when I got my knees replaced, and when my husband had his heart attack!). She’s enriched our lives immeasureably, and we are so very proud of her and thankful to have her.
    So, for you newer parents, you’ve got a lot of good things to look forward to! Just ignore the unfortunate people who might give you any negative comments.

  66. Your little boy is just so breathtakingly beautiful, just from looking at the pictures, not knowing him personally, you can see that is an extraordinary being.

  67. You have a beautiful family and an awesome story! Ours is one that is quite similar to yours. My son, who will be 2 soon has DS. We had no idea this was until he was 3 months old. I’m not sure why the doctors didn’t know. As for myself, I can honestly say I saw him as nothing but my beatiful baby boy! And still to this day and the rest of our lives will. This journey for me has been amazing! Full of surprises and ups and downs, but would not change one single thing about it. I follow your posts on FB and love to read your adventures! Thank you for sharing.

  68. Bernice says:

    My daughter is now 5 y/o. She is the sweetest girl ever. She had an open heart surgery when she was 5 months old, and after that her life changed for good. I encourage all new parents to see if their kids need any surgery or health treatment, this makes huge difference in their development. Check their ears, hearth, vision, blood issues, etc.
    And as info of my child, there is a group of about 12 men in the club we go, some of them are in their 60’s and 70’s, and every time she sees them, she goes and gives them a hug and a kiss to each of them, ask me if ANY child pays attention to them?? They are delighted and love her very much. Now my daughter is learning to play Tennis, and she loves to watch the tournaments on the tv and imitates the moves.
    Also, she is very curious, social, and playful. She has particularly preference for salty food, orange food, she loves BBQ’s, and corn tostadas.
    And I am sure she will grow up to be a very successful and happy grown-up. Cheers !!

  69. I also have a son with Down’s Syndrome. When he was born he was not expected to live. A few hours after he was born he was flown to Phoenix to an Intensive Care Neonatal Unit. We have had many memories with this child. Some good some bad. It took 6 months before someone could verify he was DS. But he is 40 years old now and he is my best friend. He still lives at home because he has several other problems and I don’t feel comfortable putting him in a group home. He attends a DTA program and has lots of friends and on the weekends we hang out together, whether it is going out to eat or traveling out of town for some sightseeing. I have had 7 children and he is most definitely the center of attention. I wouldn’t trade him for anything. Enjoy your baby because they grow up so quickly. Noah is adorable and there is plenty of potential for our children.

  70. When my little girl was 3 weeks old, she contracted neonatal meningitis. We nearly lost her twice, 2 the point were we were takin her off the ventilatior n expecting her 2 pass away. But she didn’t, she rallied n lived on n sits wih me now a beautiful, funny 4 year old. I love her more than anythin in the world, n apart from global learning delays, she is healthy happy n perfect. I would love 2 go back 2 myself when we were in the amazin facility, Rachel house 4 palliative care, n say ” that hour u just spent discussin ur daughters funeral arrangements wih Jessica’s doctors n ur husband, u don’t need it. U won’t b attendin that funeral. Instead u will attend birthday parties n play dates n spend Xmas mornins gigglin n laughin. Ull also spend almost every nite, starin in2 her beautiful brown eyes, just like u did the nite she was born. Chin up old gal” xxxxxxxxx

  71. #1: for any parent. Your child will bring you massive amounts of joy and love. Your heart will be an overfilled cup every day. Don’t focus on the yearly deficit check list from the school district or doctors. Focus on telling those bean counters the most fun stories you have, then find an extra cup for extra love you have every day with your precious. And don’t throw your precious into a volcano.

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  1. […] mentioned I wish we could go back to when Noah was born and tell ourselves a few things (or maybe 12 things) but there are emotions you have to work through at the beginning, and everyone does that at their […]

  2. […] mentioned I wish we could go back to when Noah was born and tell ourselves a few things (or maybe 12 things) but there are emotions you have to work through at the beginning, and everyone does that at their […]

  3. […] mentioned I wish we could go back to when Noah was born and tell ourselves a few things (or maybe 12 things) but there are emotions you have to work through at the beginning, and everyone does that at their […]

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