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?
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!
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.)
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. 🙂
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.
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!
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.
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!
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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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
Happy 1st Birthday Noah
Thanks Billie! :)
Nicola,
Congrats on your little baby girl! What is her name? And where are you guys from?
Thanks for saying hello by the way! :)
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!
Happy Birthday Noah xx
Thanks so much!
Happy b day noah
ok so I know its almost his seconed b day man time flies so fast
@AZ
Thanks for staying so connected to our story, we appreciate you! How's summer going by the way? Are you taking any summer school classes?
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?
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.
Happy birthday, Noah!!
Thanks!
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:)
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.
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!
What a wonderful testimony of the power of one life to do something fantastic! Thanks for sharing!
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!!
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!
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.