Things I Wish I Knew When I Learned My Baby Had Down Syndrome By Rachael Lampa

Life is going to change, but not in the way you think.

Ok, where should I start? What do I wish I knew when I learned my baby had Down Syndrome? That there was a whole world of new best friends waiting with open arms to answer all of my weird questions? The drastic increase in volume and duration of hugging in my future? Or how my phone would be glitching because of how many photos and videos I am getting of my cutie? Or how about how I get to see my cool kid, 8-year-old son, Jackson, fight his way through the crowd of kids at school pickup to come kiss his little bro everyday? That little bro’s name is Leo. He’s 2, he’s a lover of music, throwing balls, twerking (aka “Bumshuffling” from Bluey), he’s got great hair, and he was born with Down Syndrome. Leo the Lion.  

I think if I had to organize my thoughts on all of this, I would say it like this: Life is going to change drastically, but not in the way you think it’s going to. I thought maybe a specific part of our lives would change, but it has changed it in a million ways. Not only do I see people with disabilities in a different way, I see everyone in a different way, and most surprisingly, I see myself in a different way. 

Before babies, I was a touring singer who traveled the world. Always on the go, always trying to be involved in the next, new, fun thing. I felt like as long as I was out in the world achieving (what I thought was success), I had purpose and meaning in my life. And then in September of 2016, incommmming - my first son was born! My little soulmate, Jackson (46 chromosomes). And I’ll just say it, that shift was SO HARD. I had no idea who I was if I wasn’t DOing in the way I always had. I had to learn how to BE. This is where my journey towards Leo (47 chromosomes) and- through him- to myself, began.  

When I first saw Leo’s face, full smile, full impressive tongue extension, not one ounce of me wondered about his success or what he would achieve in his future. I wasn’t thinking about his physical limitations or what he would have trouble doing. All I could see was Love. He came to earth with a priority and that was to make everything other than love fade into the background. He tells us he loves us in his slowed down pace of life, in how he waits for our eye contact, in his inclination to hug before we do ANYTHING, his immediate joy towards anybody new. If he hears anything resembling music, even the hammer pounding on the construction site next door, he’s dancing. He’s got a mean side-eye that immediately changes to a smile the second he gets you to play along. He reminds us again and again and again what the most important thing in the room is: It’s each other, it’s connection. His instincts push against all of my bad habits. His instincts are to just BE. And I love him, and he is worthy of that love no matter what he does in life- which is going to be limitless because he has superpowers ;). 

I have learned so much through Leo about how I see others, Down Syndrome or not. About the way we need to show up for others, with this same amount of original love- before we know what they “do”. And maybe we can even pull off the miraculous and love ourselves like this. I know he’s taught that to me and continues to do so daily. I think the world is starving for more of this unique and wonderful brand of healing. I’m just so grateful this love lives in my house and I wouldn’t trade it for anything. 

• Sometimes organisations will come introduce themselves to you while you’re in the hospital and sometimes you might fall asleep while they are talking to you. This is ok and acceptable behavior. 
• Some of your initial meetings with doctors, therapists, and aid organisations will be confusing. Feel free to use words like, “I have no idea what I’m doing” and “Can you repeat that entire thing again?” 
• Follow uplifting and encouraging accounts on social media of fellow parents of kids with Down Syndrome. 
• Check in with the siblings, no questions are off limits. After we told Jackson that Leo had Down Syndrome, he was so relieved. He said that he had always wondered if he was sick or something and was so happy that it was just Down Syndrome.
• Early sign language is SO helpful. 
• Close physical contact is so powerful. Leo loves to be held close and tight. The perfect way to do this is in an Ergobaby carrier of choice! 

While baby carriers are fantastic for mobility and closeness, depending on the adventure of choice you might want to be a stroller along too.

There are a LOT of baby stroller options on the market. So we understand how confusing it can be to choose the one that’s right for your family. Not only are there a variety of brands, but a variety of strollers that serve different purposes.

There are a few types of strollers on the market: 

• Full-sized stroller: This is typically the stroller parents thing of buying for all its versatility.
• Lightweight or umbrella stroller:These compact strollers are perfect for on-the-go adventures.
• Jogging stroller: Designed for parents who want to combine fitness with outdoor adventures.
• Double stroller: Designed for parents with multiple kids, especially twins.
• Car seat carrier: These strollers connect to a specific car seat. We don't typically recommend these as they can be unsafe for baby and uncomfortable for parents who are pushing.

Learn more about the types of strollers and which one would be best for you.