In honor of Down Syndrome Awareness Month, we sat down with parents who have embarked on a profound journey with their daughter, Olivia, who was born with Down Syndrome. (You may recognize Olivia’s adorable smile — she’s been a Little Sleepies model for years!)
Olivia’s parents’ candid and heartfelt insights shed light on the early challenges, joys and profound love they've experienced as a family. In this powerful Q&A, they share their perspective on parenting, representation and the importance of embracing differences in our society. Through their story, they remind us that every child, regardless of their unique path, is a source of immense love and inspiration. Plus, they offer valuable advice for parents navigating this path and a message of hope to those just beginning their own journeys.
How would you describe your experience as a parent of a child with Down Syndrome?
We didn't know Olivia had Down Syndrome until after she was born. We spent many hours crying over this unexpected diagnosis. We questioned our ability to parent a child with special needs. We wondered if we would be able to give her everything she needed. We worried about her future. And our future as a family. In the beginning there were a lot of unknowns, we felt lost and scared. We went through the stages of grief and we mourned the loss of the baby we thought we would have. Not that we didn't love our baby, we just needed to accept the unexpected.
I started following different social media accounts of parent's who had children with Down Syndrome. They often referred to the diagnosis as a "blessing," and were just so positive about it. We felt alone with our negative feelings about the diagnosis. I wish more people would talk about how hard those first few days and months are after receiving the diagnosis. Now, talking with other parents, I discovered we weren't alone in our feelings. Of course we love our little girl, but it isn't all "sunshine and rainbows,” the way that others so often sugarcoat it on social media. We have had our fair share of ups and downs and it has been hard to see her struggle.
I had heard of others referring to Down Syndrome as, “the lucky few,” and we wondered what it meant. How could this be "lucky?" But we have come to realize that we, her parents, are the lucky few. The lucky few who get to know and love Olivia, her extra chromosome and all. She lights up every room she enters and she puts a smile on everyone's face. We know she will encounter obstacles, but we also know that she has overcome so much already in just her 5 years. We firmly believe that Olivia can do anything and we do not set limits on her or what she can accomplish. We never assume she can't do something, we just expect that she can and she will! She is our first child so we are really just parenting her the only way we know how. In the beginning, it was hard to see other children Olivia's age reach milestones and not compare her to them. We always wondered if I was doing enough to help her do what her peers were doing. But we realized that Olivia WILL accomplish these milestones, just on her own timeline.
To us, she is just Olivia, not Olivia with Down Syndrome. Down Syndrome is just a diagnosis and it does not define her or what she is capable of. Most days, we don't even realize she is any different than any other child. I wish back then, when we got her diagnosis, we could have seen all of the beautiful moments we would have with Olivia, we could have saved ourselves a lot of tears. We realize now that sometimes the hard moments in life actually lead us to the most amazing ones and now we know there was nothing to cry about because Olivia is such a wonderful part of our family. Yes, there have been challenges along this journey, but the happiness and love that Olivia brings outweighs it all.
We’ve loved watching Olivia grow up through Little Sleepies photoshoots. What was the experience like getting her into modeling?
A friend of ours told us about a local modeling Facebook group and we submitted a photo of Olivia when she was about a year old, not really sure if they'd pick her. But to our surprise, she was chosen to model not just once, but many times! Olivia loves
to model and she has developed a special relationship with the Little Sleepies photographer.
What does Downs' representation mean to Olivia? How often does she see people who look like her in tv, films and ads?
To be honest, Olivia is still too young to realize she has an extra chromosome that sets her apart from others. We like it this way. Down Syndrome is just one small part of who Olivia is and it does not define her. My biggest hope through seeing more inclusive advertising is that people will see past this diagnosis and see OLIVIA. Although she is special, we don't want her to ever think she is less than or different than her peers.
With that said, we are so grateful that there are companies like Little Sleepies who are proud to show diverse models in their advertising because it is so important that other children see that everyone is unique so that they can embrace and see the beauty in differences in their everyday life. When companies like Little Sleepies include children like Olivia in their advertising, they are helping to normalize differences with our children and help them become more inclusive in society.
How do you celebrate Down Syndrome Awareness month? How can we all spread awareness in October and beyond?
We actually don't do anything to celebrate Down Syndrome Awareness Month because we celebrate Olivia every day of the year! She is our special, sweet little girl! We feel that the best way to spread awareness is by teaching your children to embrace each other's differences.
When children like Olivia wave or say hi- say hi back! Invite them to playdates, birthday parties, etc. Just make them (both the parents and the child with Down Syndrome) be and feel included. Olivia does not see differences in others, I think she is made the way God probably wanted everyone created- without hatred and with complete love for all others. We have so much to learn from Olivia and I'm confident she will continue to teach us.
What sources of support have been the most valuable throughout the years? Do you have any recommendations for other parents?
In the beginning, this journey felt very isolating. I tried to stay off the internet for fear that I might find sad information about Down Syndrome. As the years have passed, we have become more comfortable with discussing our journey and reaching out to others. I also work as a NICU nurse and often encounter parents who are experiencing the birth of a baby with Down Syndrome and I'm able to use my experience with Olivia to help them. Our family has been the biggest support for us and Olivia- always cheering her on and being there for us as we embraced an unknown future for her.
Our recommendation for other parents would be to just remember that every child is different, whether they have Down Syndrome or not, so they will accomplish milestones at their own pace. We have learned that Olivia just does things when Olivia is ready. Her stubbornness is one of her best qualities sometimes. Try to talk to others who have been in your shoes with a child with Down Syndrome, because chances are that what you're going through (whether it's a good feeling or a bad one), they have been there too.
To the parents who may be reading this and just got the diagnosis that their child has Down Syndrome, just know that everything will be okay. And even though, like us, you probably never expected to have a child with Down Syndrome, eventually you will feel blessed and "lucky" that you do.
This Down Syndrome Awareness Month, let us celebrate not just the differences that make each of us special but also the shared love and compassion that unites us as a community. May Olivia's journey inspire us all to embrace diversity, foster inclusivity and recognize that every child has the power to teach us about love, resilience and the true meaning of "lucky”!
How do you celebrate Down Syndrome Awareness Month, and what steps can we all take to spread awareness and acceptance throughout the year? We invite you to share your thoughts and stories in the comments below!