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Caterina Scorsone on Down syndrome and why it’s all about difference, not disability

Actress Caterina Scorsone is best known for her role as the passionate and rebellious Dr. Amelia Shepherd on the iconic series, Grey's Anatomy. Beyond her life on set, however, Caterina is also the mother to two girls, 6-year old Eliza and 2-year old Paloma.

Paloma was born with Down syndrome—a chromosomal condition associated with intellectual and developmental delays. And since Paloma's birth in 2016, Caterina has become a prominent voice on social media for raising awareness about the condition. In 2018, Caterina made multiple headlines for her Instagram post during Down Syndrome Awareness Month.

In this episode, Liz and Caterina talk about how Caterina processed her daughter's condition, and learned to embrace her daughter's differences rather than view them as "disabilities".


Liz: Caterina welcome to the Motherly podcast.

Caterina: Thank you. I'm excited to be here.

Liz: So something I love asking all fellow mothers is what was your view of motherhood before you became a mother yourself?

Caterina: Interesting. I came from a very large family. There were five of us. My mom was kind of a brilliant. She is an anthropologist and speaks many languages and that was kind of her gift to us. She was always giving us books and teaching us about things and having us ask questions. And so I think I guess what I absorbed was that the mother was somebody who like gathered wisdom and information and passed it to their children and was available for like questions. And so I think that was kind of the unconscious thing that I observed about motherhood but then as I got closer to it, I guess it became. I wasn't like somebody who grew up thinking, "Oh I need to be a mother." I guess it was assumed but it wasn't like a preoccupation of mine. And then I think as I got closer to the time where I would be a mom, I got interested in midwifery and kind of the politics surrounding western medicine and women. And so I became a doula and I went and studied with Ina May Gaskin on the farm in Tennessee. And I came out to L.A. intending to apprentice and become a midwife. And so I think motherhood for me was like I didn't really think about the children as much as I thought about like the politics of it.

Liz: Empower too, wow. That's amazing. What happened in that time from Ina May to potentially becoming a doula to going to pretend medicine and Hollywood.

Caterina: Interesting because I had been studying like the ways in which western medicine is sometimes not so kind to mothers.

Liz: Yeah so tell me about that. How did that transition happen professionally?

Caterina: I had been an actor as a young person. I kind of stumbled into it as a kid. My friend was doing it and I was like curious about it and my sister wanted to do it and so I ended up on the Canadian iteration of Mr. Roger's Neighborhood. And so I just started doing that and my parents are both in; my father is a social worker and he runs homeless shelters and so I knew that if I wanted to go to college I would probably have to pay for it myself. And so acting really was a way for me to finance my education. And so I was doing it from about age nine until (well eight) until I was about nineteen and then I was over it and I kind of quit for a while and I went to college and had this journey through midwifery. And then a friend who had cast me in a show back when I was a teenager, wrote a pilot and cast me in it. And I was like, "Great. I'm starting to have more student debt." And so I did the pilot and then that turned into three years as the lead of a show. And that was a lot. But I was also finishing up my B.A. at the time and I think I was coming to a more mature understanding of how important the arts are and how important narrative is to developing one's identity as a person.

Liz: So you talk about how you're really kind of revered your mother and you had the sense of motherhood as wisdom even though it wasn't something you always focused on. When did you get to the point in your life where you realized you wanted to become a mom?

Caterina: I met my super-hot husband.

Liz: I understand.

Caterina: My husband and I met and it was like a thunderbolt, like we fell in love at first sight. We were engaged like a year to the day we met and then we got married. And then we moved into a house that had another room and we were like, "Well. You gotta put a baby in that room." And so it was very much like an evolutionary impulse to procreate. And so.

Liz: How did becoming a mom for that first time with your daughter Eliza transform you personally and also how did it transform your career seven years ago when you had your first daughter?

Caterina: Right. Well I was very, very lucky because I was already in Shondaland when I had my first daughter. And so the whole reception of the news that I was pregnant was different than what we had heard about as like younger actresses. You know I told Shonda and she celebrated with me in her office. And there was absolutely no like, "Oh how are we going to handle this?" She was so excited and they knew that they would either incorporate it into a story or they'd write around it and that this was not a problem. We have like wardrobe people who can like add an extra panel to your lab coat. Like and so she just totally took it in stride which was so reassuring 'cause I think yeah growing up in the industry there was this rumor that you had to choose between your kind of creative outlet and your professional life and your financial life and motherhood. And. And that was absolutely not the case in Shonda Land. You know we're very lucky that we're in a financial situation in this job where we can afford to kind of bring someone to set with us. But like I had Eliza in my trailer and I got to breastfeed her for years because someone would be with here in the trailer and I'd shoot and work and then when it was time I'd come back to the trailer and nurse.

Liz: That's the dream.

Caterina: Yeah. It was amazing and it didn't cost extra money to the production

Liz: You describe your mother as this like example of motherly wisdom in your life and then you describe having your first child and being totally embraced at work And all of that happened and somewhere along the way then you find out you're having a second child. And I want to hear more about the story of Paloma, and when you found out of her Down syndrome diagnosis.

Caterina: Right. So I guess. the profound thing that happened when we found out about Paloma's diagnosis is that my whole concept of what motherhood was had to shift. So when I had Eliza I. I think what I unconsciously thought about my job as a mother was that I was supposed to equip her to survive in a competitive world. And my job was to make sure that she was educated and that she was able and that she had all of the skills that she needed to. I thought that was my job. And so then when Pippa was born and I realized that she had Down Syndrome so she was going to have some physical differences and some cognitive differences, and I didn't know. I mean there's a huge range of abilities within the Down Syndrome community. But I didn't know what her capacity would be. Her cognitive capacity, her physical capacity. And I. And it really did send me into a tailspin of like, "I. I don't know what I'm supposed to do. I don't know what. What I am as a mother. How do I mother this child? If my job is not to equip her to compete." You know and. And. And you know dominate socially or educationally or physically or economically. If I'm not just supposed to be helping her do that, what am I? What? What is a mother? What am I? What is my job? And. And everything got really, really. First it was like you know at tempest in a teacup and then it got really still and simple. And I. I remember one day at the very beginning before I kind of understood anything or knew a lot about the journey, just this kind of simple voice came to me where I was like, "I don't know what to do. I don't know what to do. Oh. I'm supposed to keep her safe and I'm supposed to make her feel loved." And suddenly my understanding of my job as a mother completely distilled and opened up and all of the kind of frenzy and chaos of thinking that I was supposed to be doing something in particular to somehow manipulate or control the worlds of my children fell away and I understood that even my parenting of Eliza had been kind of off track. And that. That she was going to unfold in exactly the way she was going to unfold and Paloma was going to unfold in exactly the way she was going to unfold and it was not my job to. To control that path or to stack the deck in any way. I'm here to be a container for them and to. To keep them safe as they're developing and as their curiosity about their unfolding is happening and. And I. And I'm here to love them. And so it. It. It massively shifted my perspective on motherhood.

Liz: That. That's incredibly powerful and I. I wonder if you could help us kind of be with you in that time when you first found out that your daughter had Down Syndrome. What did it feel like to go from that shift in your own identity from being one kind of mother to being on a different journey?

Caterina: Right. Let's see. I mean I think the initial thing for me was my husband and I had talked about Down Syndrome a lot actually. He's a really interesting and dynamic person and for some reason ever since high school he had kind of vaguely thought he might have a child with Down Syndrome which is a very weird thing to think as a high school student. But he seems to. He's got a very kind of intuitive soul I think and. And so we talked a lot about it and how you know it is a cognitive and a physical difference but. But that it's a beautiful diversity. We had kind of been very you know philosophically fine with it. But then of course when you have a kid with Down Syndrome you're like, "Ah. I don't know what to do. I haven't seen this modeled." I know the developmental stages for Eliza. I know that at one she walked and when she got her teeth. You know I know what that looks like and I know where you go to preschool when you have 46 chromosomes. But suddenly having a kid with 47 chromosomes you just feel completely out of your depth. Or not everyone. I did. I'll speak for me. I felt out of my depth. I felt scared and ill equipped and isolated. And. And I think there's so much misinformation on the internet and even in like You Have a Child with Down Syndrome books. Like you get them and it's so weird. It's like a list of all of the possible things that could go wrong in the life of your kid. It's like, they might have hearing problems. It's possible they might have vision problems. And it goes through this like gauntlet of like fears Which if you were to apply that to any child, if you sent them a book when their baby was born it was like your child may be an alcoholic. They could cheat on their taxes or go to jail. You know you'd be like, "Oh my God! This is terrible!" and so a lot of that early experience is informed by the level of fear and apprehension that the people around you have about the particularities of your child. And so initially like the internet was off limits. Those books were off limits. The book that I loved and that. That. That completely soothed and educated my heart was one called Expecting Adam by Martha Beck

Caterina: And it kind of like reorients your vision and it kind of shows you that like okay this is a totally different journey but like there's something mystically special about this journey and. And you can relax. You can actually be curious and present and like tenderly open to this really special and unique path that has been given to you and you can embrace it in a way that is like wow. This is like one in seven hundred people get to experience this and I'm one of them. And you can. You have a choice about whether you want to open to that and find the richness and find the depth there and then find the other moms and that was huge. I think one of my first phone calls was to Amy Brenneman who was on Private Practice with me and she and her husband Brad have a beautiful daughter named Charlotte who has a chromosomal variation. And. And so I called her and I you know brought all of my scared feelings to her and like wept with her and grieved with her and I was like, "I don't know. I don't know how to do this. How do I do this?" And she was like "This is how you do it. You do it just like you would do with any other child. You learn who they are you know and you learn what they need.

Liz: So one of the things that I notice in the way that you talk about Down Syndrome is you talk about it as a cognitive or physical difference.

Caterina: Yeah.

Liz: And not as a disability.

Caterina: Right.

Liz: Why is using that kind of language matter so much to you?

Caterina: Because I think. that our culture is really stuck in a vertical hierarchical idea of better and worse. That the whole orientation of our culture is that there is a normative and it's usually white and male and cisgendered and then there's how close you can get to that. And so I think that one of the things that we have the opportunity to do as a culture is to experience our connection with everyone and our own beauty and our own perfection by shifting that vertical perception to a horizontal one; where we don't see oh those people are the best, these people are somewhere kind of in the upper middle, then we've got lower middle and then we've got, "Oh gosh I'm glad I'm not them." And we shift it to a horizontal view of like, "Oh wow. We're all doing our thing." And everybody's this kind of gorgeous unique person. I mean if you look at like nature you wouldn't be like, "Oh that flower's a good flower and that flower is kind of medium and that one's super unfortunate." You know what I mean? I think when it comes to our differences we talk a lot about you know ethnicity and skin color and gender and sexual orientation. We don't talk a lot about our cognitive differences and. And. And those cognitive differences allow for colors you know what I mean. My daughter, she sees. She learns visually better than she learns through auditory learning. And so she speaks sign language because that's easier for her to learn first. But that's beautiful. There are things that I've learned in sign language, signs that have kind of opened up a whole way of looking at a word that I wouldn't have had if I was only using verbal language. So. So. So yeah. I see it as. I see what she has as a difference. She does things differently and it's just as perfect for her. Her chromosomes are unfolding exactly as they were supposed to just as mine are.

Liz: You've talked about how this experience has changed you as a mother and I'm curious if you can kind of share what you've seen between Eliza and Pippa as sisters. What does Eliza understand and how do you see their sister relationship?

Caterina: I see them actually as a really typical sibling relationship. I think that is one thing that comes up, I think a lot of parents are like, "We have a second child with Down Syndrome. What is this going to mean for my first child? How will their lives be affected negatively?" I think that is a fear that comes up for everybody because of what we've seen in the media All Eliza really thinks is that Pippa's lucky because she gets to be a baby for longer, is what she says. Because Pippa develops a little bit more slowly. And that also I didn't understand. When I was like, "Oh she'll have slower development" I was just thinking cognitive. The fact is Pippa has like two teeth on the bottom and like four molars. She does not have a full mouth of teeth yet and it's because literally everything in her development is happening slower because of the enzymatic you know things that are going on with the extra chromosome. She's developing slower. but she's still developing. She's still hitting all of the milestones. It's just happening at a different rate. And so that was an easy way to help Eliza to understand what was happening, that. That. You know that she was going to be a baby for a little bit longer. And. And Eliza just thinks that she's really lucky 'cause she still gets to be carried and. and she's all about that. And now that Pippa's kind of up and moving around and. And. And signing and talking a little bit, now they're starting to have a fun dynamic and Eliza really likes to play Harry Potter with her. And Pippa plays the role of Hedwig and she can definitely say, "Whoo, whoo, whoo." And Eliza thinks that's hilarious.

Liz: So. So you talked. You've talked about how the diagnosis really not only kind of transformed your view of motherhood but the way that you described it honestly almost sounds like you found a freedom in motherhood because it almost like opened up this new ground of what your mission was as.

Caterina: Yes.

Liz: I guess I'm curious. Curious how you nurtured yourself through that journey

Caterina: Okay. I'm going to talk about two areas; one was the other moms. So the other moms showed up in an incredible way and I think that it's true, communities often come together through the very thing that the kind of normative society would say is your vulnerability. And it opens up an intimacy and so the moms in the Down Syndrome community are like a magic love army. And they kind of embrace you completely. And so the other moms and really kind of leaning into the. The power of that love and of that connection. And then also I think the change in my perception of motherhood was nurturing to me because I think one of the other things that happened was I saw how I was loving my daughter, my. My first daughter Eliza for her qualities. I thought before Pippa was born that I loved Eliza so much because she was so clever and she was so beautiful and she was so funny and I was like wow, oh my gosh. I'm so overwhelmed with love for her because of all of the wonderful things about her. But all of those things were external qualities. And when Pippa was born and I had to confront that like thought experiment of like, "I don't know. I don't know if she's going to be clever. I don't know if she's going to be funny" which of course she is. And now that I know more about Down Syndrome I'm like, "Oh what a stupid thought I had." But. But I didn't know and it forced me to realize that I was solving my other daughter and everyone, including myself, for absolutely the wrong reason. I was loving people for their external qualities and not for their essence. And so when Pippa was born and I had to learn to love essentially I was able to love Eliza for her essence, Pippa for her essence, my husband for his essence and myself for my essence. And that was the most healing and nourishing gift that I could possibly have been given by this universe.

Liz: So many families to some degree you know experience what yours has like this like totally unexpected diagnosis that just completely transforms not only their identities but like the day to day of their lives look like in a really acute way. So what have you said? Have. Have you had someone in your life go through that after you and. And what do you say to someone facing a new diagnosis for their child?

Catherina: Gosh. I would say I'd go in two directions. One is I'd absolutely create a safe space for them to feel all of the feelings that they're having. I. I definitely don't say, "Oh you're so lucky!" Because they have to grieve a perception that has been you know fed to them culturally our whole lives. Like you really have to kind of you know emulsify and break down that whole world view. And that's painful. And so I try not to be overly cheerful because I want them to feel accompanied in where they're at at that time. And when they feel. When I feel like they're ready for it you know you say things like, "You hit the jackpot." You know and "Oh my gosh, you got chosen for this experience. This is unbelievable and your world is going to open up in ways that you could not have imagined." You know and. And. And. And that might sound mysterious and opaque to someone at first, but people said that to me at the beginning. Other moms said that to me and I was like, "Okay. I don't know but I believe you because you look really sure. You look joyful. You look okay so I believe you." And then looking back you're like, "Oh here I am. This is what. This is the joy that they were talking about." and I just had to give myself the kindness and the tenderness on my way towards that place. And now I get to pay it forward.

Liz: So at Motherly we talk about how motherhood helps to bring out our superpowers. So this idea of we discover things in ourselves after we become mothers that we didn't even know where there. What do you see as your superpower in motherhood?

Caterina: Oh gosh. I mean there's so many levels to this question, that's why I'm pausing. You know I. I. I never could have imagined that I could do the job that I do with having children. I mean it. It felt like it was such a. A full time occupation, mental occupation, emotional occupation, physical occupation and it still is. I think the fact that I can transition from work and come home and be completely present with my kids and witness them in all of their kind of joy and discomfort and really have left work at work, that's been an amazing superpower that I can kind of leave work there.

Liz: Caterina thank you so much for joining us today on the Motherly podcast.

Caterina: Thank you so much for having me. It's been such a pleasure.

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