How An Unexpected Diagnosis Unveiled A Beautiful Treasure | Global Down Syndrome Foundation
Caterina Scorson and family

How An Unexpected Diagnosis Unveiled A Beautiful Treasure

Caterina Scorson and family

Caterina Scorsone and family (photo by Rebecca Couresy)

Actress, advocate, and mother of 3, Caterina Scorsone shares how having a child with Down syndrome challenged her to open her mind. What she discovered changed her life.

Best known for her role as Dr. Amelia Shepherd on ABC’s Grey’s Anatomy, award-winning actress Caterina Scorsone has spent her career playing different characters by learning how to empathize and connect with people, a skill she developed as a child actor in Canada. In November of 2016, Caterina received unexpected news and she had to prepare for her most challenging role yet: mother to a child with Down syndrome.

When Caterina learned that her daughter, Paloma, “Pippa,” had Down syndrome, she recalls feeling scared and intimidated by the diagnosis. “I have always been the type of person who tackles challenges with careful planning and thoughtful preparation, and this, I was completely unprepared for,” Caterina explains. “And that caused me so much anxiety and worry. What type of mother did that make me, not knowing how to care for my own child?”

Honing her years of practice studying how people think, feel, and act, Caterina realized she had all the tools she needed to be a good mother to Pippa. “No one is ready for a Down syndrome diagnosis for their child, but they become ready one way or another, because they have to.

“Pippa has taught me how to be a better mother to all my children, and to be a better person in general. A better friend, sister, daughter, colleague,” says Caterina, who is using her public platform to share her parenting experiences with the world.

A rising advocate in the Down syndrome community, Caterina hopes to spread awareness to society and serve as a source of information and support for families.

Caterina Scorsone with her family

Caterina Scorsone with her family (photo by Rebecca Couresy)

Motherhood

Today, Caterina is a mother to three beautiful children: Eliza (9), Paloma aka “Pippa” (4), and Lucinda aka “Lucky” (19 months). She says that while they are all very different from each other, the thing all her children have in common is their very distinct and strong personalities. The proud mother describes Eliza as the problem-solver and creative thinker, Pippa as insightful and determined, and Lucky as fun-loving and strong.

Caterina shares how her ever-changing and ever-growing journey as a parent has continued to challenge her and teach her important lessons.

“When I was pregnant with my first, Eliza, I was so excited and ready to be a mom. I wanted to make sure I was the best mom I could be, so I read all the books and articles I could find on parenting. It was like preparing for a role. By the time Eliza was born, I felt really prepared.

“Three years later, when Pippa was born, the whole game changed. When we received her Down syndrome diagnosis, I was scared. I was intimidated by my lack of knowledge and skill in this area. I didn’t know what her needs would be or how I would meet them. I worried about what the future would hold for her.”

Searching for support and information, Caterina was frustrated by the lack of resources available to new parents of children with Down syndrome. She recalls how, at first, she allowed her frustration to take over, and her mind became overwhelmed with thoughts of fear, worry, and doubt. “My mind was stuck in the future, worrying about all the what-ifs, that I was missing the what-is right in front of me,” Caterina explains.

Caterina realized she needed to put her worries aside and move her focus to the real priority – which was to be there for her children. Shifting her focus to Eliza and Pippa, Caterina’s worries transformed into curiosity. She observed how the two interacted with each other and how both were developing and growing, in their own ways, at their own speed.

Caterina describes Pippa as very determined, insightful, sensitive, fun, and honest. “One of the most beautiful things about Pippa is how connected she is to her experience. If she wants to do something, she is very excited to do it and thoroughly enjoys it. And if she doesn’t want to do something, she is very connected to her gut and knows what she doesn’t want. Pippa’s self-acceptance frees her limiting beliefs, like worry about other people’s expectations of her.

“Once I embraced the diagnosis, I was able to appreciate what it invited into our lives, which was a beautiful shift in perspective that enhanced our whole way of living. Pippa has forced me to leave behind preconceptions about who people are and what they should or should not be like. It allowed me to see every person I encounter as completely unique, no longer subjected to some sort of list of standards that people are either succeeding or failing to live up to. I had to radically reconsider everyone’s individuality, including my own.”

In December of 2019, when Caterina had her third daughter, Lucinda, “Lucky,” she felt more prepared than ever before. Caterina knew this newfound life perspective would instill important values in all her kids and that she could handle any challenge that comes their way with grace. Similar to the creative environment she grew up in, Caterina says the family enjoys lots of dressing up and dance parties together in their home.

Pippa scorsone daugther to Caterina Scorsone

Pippa Scorsone daugther to Caterina Scorsone (photo by Rebecca Couresy)

Giving Back

“When Caterina took to Instagram to announce Pippa’s birth and diagnosis with excitement, we could tell right away that she was one of us and that she would be a powerful voice in the Down syndrome community,” says GLOBAL President and CEO, Michelle Sie Whitten. “After developing a relationship with her over the next several years, and learning about her passion for our research, we proudly selected Caterina as the recipient of our 2020 Quincy Jones Exceptional Advocacy Award, GLOBAL’s most prestigious honor.”

Due to COVID-19 restrictions, Caterina accepted the award virtually at the 2020 Be Beautiful Be Yourself Fashion Show. Caterina was proud to be a co-awardee with Spanish model Marián Ávila, who is dedicated to getting people with Down syndrome more represented in the media. “Marián is such a beautiful person inside and out. After the show, she even mailed me a box of ‘Congratulations’ chocolates! It was such a personal, sweet touch,” Caterina remembers.

As a GLOBAL advocate and spokesperson, Caterina aims to use her public platform to raise awareness about Down syndrome and help new parents navigate the diagnosis. “I want to help new parents feel less scared and more excited about their child’s future, knowing that they have support,” she says.  “My hope is that as a culture and a society, that we can learn to lead with the person, not the diagnosis. That we can recognize the humanity in each one of us. The Global Down Syndrome Foundation embodies that vision.”

One of the elements of GLOBAL’s work that Caterina feels most passionate about is the breakthrough research. “GLOBAL’s research arm, the Crnic Institute, published a groundbreaking study on how the overactive immune system in people with Down syndrome is part of a different disease spectrum, which opens up so many opportunities for research,” Caterina explains. “It’s really hard as a parent to make sound medical decisions for your child when the information that your doctor has is often not complete based on the genetic makeup of our kids with Down syndrome. It’s priceless to have the full picture of information.”

Caterina encourages families who are interested in advocacy to read about the important breakthroughs in research on GLOBAL’s website and to join them in their fight for increased federal funding for Down syndrome research.

Pippa Scorsone daugher of Caterina Scorsone

Pippa Scorsone daugher of Caterina Scorsone (photo by Rebecca Couresy)

“Down syndrome is just one aspect of the deep and multi-faceted human beings that have the condition,” Caterina continues. “I’ve found that the key to being a good parent, and a good person, is in curiosity. Be curious about your children and who they are. Be curious about yourself. Be curious about what scares you. Lead with the search for knowledge and understanding, rather than judgement, and you will be surprised by how much you will continuously learn about the world.”

To learn more about Caterina and to watch her inspiring Quincy Jones Award speech, visit www.bebeautifulbeyourself.org/caterina-scorsone

To access GLOBAL’s informative resources on research and medical care, visit www.globaldownsyndrome.org/about-down-syndrome/resources


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