Celebrating World Down Syndrome Day with Paige Zurfluh

This Thursday, March 21, people all over the globe will celebrate World Down Syndrome Day. Observed by the United Nations since 2012, World Down Syndrome Day is a global day of celebration and awareness that serves the purpose of advocating for the rights of people with Down syndrome. Each year in the United States, about 6,000 babies are born with trisomy 21 (Down syndrome). Despite many individuals with Down syndrome being perfectly capable of living a healthy and independent life, they face discrimination and exclusion from a society that perpetuates many misconceptions about their abilities. World Down Syndrome Day is a day to shine the spotlight on individuals with Down syndrome, and is a call-to-action to celebrate diversity and promote inclusion. 

Meet Paige Zurfluh, a Washington state mom also known as @paigeandbabes, who has built a following on Instagram through candid and authentic glimpses into her life. Her youngest son, Aspen, has Down syndrome, and Paige’s nearly 14k followers love seeing her little boy grow and thrive. In honor of World Down Syndrome Day, we’re sharing a very special Q&A we did with Paige, where she speaks about all things motherhood, what it was like to navigate a Down syndrome diagnosis, and, of course, her precious Aspen.

Q: Can you tell us a little bit about yourself and your family?

PZ: My name is Paige. I am 24 years old and a stay-at-home mom for my two (almost three) beautiful children. My children are Beckett (age 7) and Aspen (age 2), and we are expecting our first daughter this March! I had Beckett while I was a senior in high school, and shortly thereafter, I met my now-husband, Dylan. We got married in 2021 and were expecting our son Aspen later that year, but little did we know he would bless our family with an extra 21st chromosome! We are like any other typical family, we love spending time with each other, going on new adventures, and creating lasting memories as a family.

Q: What was it like to receive Aspen’s Down syndrome diagnosis?

PZ: Initially, we found out during my pregnancy, through the 20 week anatomy scan, that Aspen was presenting some soft markers indicating he could potentially have Down Syndrome. Because we were so young, we thought there was little to no chance that these markers were indicative of that. But, for better knowledge, our MFM recommended we do genetic blood screening. While we waited for the Maternit21 NIPT to come back, I requested a second ultrasound to confirm their original findings. During the second scan, they also discovered he had a heart defect called an AV canal defect or AVSD. This congenital heart defect is commonly associated with individuals who have Down Syndrome. Shortly thereafter, we got our genetic testing results that screened positive for Down Syndrome. At this point, we knew that there was a very good chance our son would be born with Down Syndrome, due to all of the markers. This hit us heavily, as we had little knowledge of what this diagnosis meant and how it would affect ours and our sons’ lives. Throughout the rest of my pregnancy, we held on to the slight possibility, though small, that they were fluke results (as the genetic screening and ultrasound findings were not diagnostic) and that we would have a typical child. During the remainder of my pregnancy, I obsessed over researching and finding out as much information as I could about Down Syndrome and pregnancy. I feared the chances of his official diagnosis, due to the stigma around having a child with a genetic disability. But when Aspen was born and we received our definitive answer, it was like a weight was lifted off our shoulders. We were so at peace and ready to embrace our sweet baby. To this day, I would never change his diagnosis. It’s a part of what makes him who he is.

Q: What has been the most surprising thing about parenting a child with Down syndrome?

PZ: The most surprising thing to us thus far has been that he really is just a toddler! He does all the things toddlers like to do, like plays with balls and cars, and he loves to be tickled and rough house, splash in the bath, dance to music, and watch kids’ shows. Aspen’s personality is huge–he’s hilarious and so silly. He gets mischievous, and gets upset when he doesn't get what he wants. He has his own preferences and opinions, like any person would! Although he has different challenges compared to his typical counterpart because he has Down Syndrome, he is a kid first. Initially, we got so caught up in the diagnosis, when in fact, it’s just a small piece of the many factors that make up who Aspen is.

Q: What have been the greatest challenges since Aspen’s diagnosis? Alternatively, what has warmed your heart the most?

PZ: Down syndrome comes with so many amazing attributes, but I will never sugarcoat that it also comes with its challenges. The greatest challenge for our family since Aspen’s diagnosis has been navigating what he needs in terms of support. Children with Down syndrome do not come with an instruction manual, and it is certainly not one-size-fits-all. Finding individualized support that works for your child can be extremely challenging, and as a parent to a child with a disability, you really have to find your voice and learn how to advocate for them. But, when you find a doctor willing to listen to your concerns or you finally get your child into the therapy that's going to help them make great strides, it is so rewarding. What has warmed my heart the most is watching Aspen meet milestones he’s worked so incredibly hard for. If there is one thing we’ve learned about Aspen, it’s that he is bound and determined when he gets his mind set on something, and he won’t stop till he gets there! 

Q: How did you explain Aspen’s diagnosis to your older son, Beckett?

PZ: Beckett was four, turning five, when we found out about Aspen’s diagnoses, so finding a way to explain what Down syndrome is without overcomplicating it for him was extremely important. We were given an incredible book called 47 Strings by Becky Carey after Aspen’s official diagnosis, which was a great introduction for Beckett to gain an understanding of his brother's diagnosis on a kid-friendly level. I highly recommend this book to anyone trying to navigate the best way to explain Down Syndrome to younger kids. From there, we’ve always kept an open dialog with Beckett and have just explained things along the way when he expresses curiosities. 

Q: What is your favorite thing about being a mom of two?

PZ: There are so many things I love about being a mom of two, but to put it simply, I just love getting to experience life with them and see the world through their eyes. I’m so honored that I have the opportunity to stay home and create a childhood that I hope they will remember and cherish forever, and hopefully be able to provide the same for their families someday.

Q: If you could go back in time to the day of Aspen’s diagnosis, what would you tell that past version of yourself?

PZ: I would tell myself to go out and seek community and real families of children with Down syndrome. If there is one thing I could tell a new mom or dad with this diagnosis, it is to stay away from Google! There is too much misinformation, outdated representation, and fear mongering! Talking with real people about their real experiences brought me so much more comfort and understanding as to what having a child with Down syndrome would be like. Having known what I know now, I would've stayed far away from the Google search bar. I would also tell myself to take it easy, let go of the fear, and enjoy my pregnancy.

Q: What would you say is the greatest misconception that people have about Down syndrome?

PZ: The greatest misconception, in my opinion, is that people commonly assume having Down syndrome puts limits on their abilities and what they will be able to achieve, and that it defines who they are. Although the hill they climb may be a lot more challenging than the ones you and I face, they are extremely capable humans who can do amazing things. Therapies and support have become vastly more accessible, and because of the availability to these services, individuals with Down syndrome will only continue to prove how incredibly capable they are. Holding the door open for them will only allow more opportunity for them, and the world around them, to grow. 

Q: Who or what has been your greatest support throughout this journey?

PZ: My greatest support has been my family and the Down syndrome community. Having a good support system when navigating so many unknowns has been crucial for us. Alternatively, finding that community of people who also have kids or loved ones with Down syndrome has given our family such a feeling of belonging, and having people who have walked or are currently walking in the same shoes makes this journey feel that much less lonely.

Q: While Down syndrome representation in the media is getting better, there is, of course, still room for improvement. As a parent of a child with Down syndrome, is having adequate representation important to you?

PZ: Having adequate representation is so incredibly important to me, and I think most families consisting of individuals with Down syndrome would agree as well. Familiarizing and normalizing Down syndrome in the media, and just society in general, will help break the stigma surrounding this disability. More and more, we are seeing individuals with Down syndrome acting in movies, being casted for modeling, and starring in reality TV. It has been so heartwarming to see representation in these areas, and I'm excited to see where else representation will go! 

Q: Aside from giving extra cuddles to Aspen, are you planning to celebrate World Down Syndrome Day? If so, how? 

PZ: Of course we will be! We will be rocking our mismatched socks and WDSD T-shirts to show representation for our beautiful community of friends with Down syndrome and spreading the love through our social channels!