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


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?


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.


It’s been one fun year!

The day that changed our life.

As I mentioned above, 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.


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.


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!) I didn’t know 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.


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 find myself 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!


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


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 and 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.


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. You’re 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. You 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.


I love this kid!

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


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