Presvytera Melanie DiStefano: Welcome to Family Matters: Fully Human edition. My name is Presvytera Melanie DiStefano, and joining me today are Matt and Louise Heusel.

Mr. Matt Heusel: Hello!

Presv. Melanie: Hi, Matt! Hi, Louise!

Ms. Louise Heusel: Hello!

Mr. Heusel: How are you, Presvytera?

Presv. Melanie: We’re well! I’m doing well today, thank you. I hope you guys are, too.

Mr. Heusel: Great.

Presv. Melanie: I’m just going to read a little bit about you for our listeners to learn a little bit about your background. So Matt is a middle school language arts teacher and a musician, and Louise is a physical therapist. They have three daughters: Helen, who is 14; Hannah, who will be 12 soon; and Emilia, who is nine. They are part of the St. John the Divine Orthodox Church family in Wheeling, West Virginia. Louise has been a member of St. John since birth and celebrated every sacrament, from baptism to marriage and to the baptisms of her children in this parish. Matt was Catholic when they married, and converted to Orthodoxy two years ago. So, welcome, Heusels! So good to be with you today.

Mr. Heusel: Thank you for having us, Presvytera. It’s our pleasure.

Presv. Melanie: We want to learn more about your family, because this is a podcast about families who have a member that has a disability. Particularly, we want to learn more about your daughter, Emilia, and her story, and your collective story as a family. If you could share a little bit about when you first learned about Emilia having Down Syndrome, or just share whatever you feel on your heart to share.

Ms. Heusel: So we didn’t know that Emilia had Down Syndrome officially until she was born. I was of advanced maternal age; I was 37 when I gave birth to Emilia. During my pregnancy, my OB wanted me to have the bloodwork done to determine whether or not she would have any kind of genetic disorder. I kind of put it off. They kept pressuring me to have it done, because it didn’t really matter to us whether or not she had any issue. But I had the bloodwork done late, like 26 weeks, something like that, and it came back that she possibly could have a problem. So then my OB pressured us to go to Pittsburgh—we live in Wheeling, so it’s about an hour away to go to Pittsburgh—to have some more testing done, to have a 3-D ultrasound and some genetic testing done. So we did go up and have that. That testing came back negative for any problems, but my OB was very determined for me to have an abortion. So he didn’t feel that we should have delivered to have this baby, so from 26 weeks until we delivered Emilia, every appointment, he was trying to pressure me—Matt didn’t go to my appointments with me, but I would go alone—and he would try to pressure me into having an abortion.

Presv. Melanie: Oh my gosh!

Ms. Heusel: We know that someone who went to him had a late-term abortion because of a similar situation. They were of advanced maternal age, and a testing came back for possible Down Syndrome. Now, I’m a physical therapist, so I have some knowledge of what Down Syndrome entails, and I knew that lots of kids who are born with Down Syndrome who are perfectly happy, healthy, wonderful children. And we don’t believe—Matt and I don’t believe in abortion anyways.

Presv. Melanie: So let me just ask you this question, because here I’m thinking if I’m going to my OB appointments and every time my doctor is pressuring me, what would that do to someone emotionally? What kind of emotions bring up in you when that would happen?

Ms. Heusel: I was a mess.

Mr. Heusel: And we were just a little annoyed about the whole deal, and kind of angry about it because—

Ms. Heusel: Well, it raised my blood pressure. I never had a problem—I have two other children, and I never had a problem during pregnancy with high blood pressure. It caused me to have… Because I would dread going to the appointments, I would dread being there, because I repeatedly told him that there was no reason… I would never have an abortion, especially… I mean, I would never have an abortion at any point in time of the pregnancy, but at that point, even at my last visit with him, 34 weeks, he was still trying to pressure us, pressure me into having a late-term abortion. He was telling me that she was going to be born with all kinds of medical problems. He actually stated that she would be a drain on society and that I was being selfish to bring her into the world.

Presv. Melanie: Oh! Just hearing that… I’m finding it very difficult to not get emotional, to not get angry. Obviously there was something going on inside of that person that they were so bent on pressuring you to…

Ms. Heusel: Well, and he pressured other people. We know that he pressured other people, and they weren’t as knowledgable or convicted with their faith, and they went ahead and had these late-term abortions.

Mr. Heusel: Well, but you know the thing is, then we learned some of this stuff later on, and it was like… We felt so bad for these other folks that were pressured as well.

Ms. Heusel: Well, I mean, I will tell you that… And then we had a really bad birth experience with this doctor. Once we had Emilia, she was born, they placed Emilia on my chest, and then the entire group that was in the room—so, several nurses, the doctor—

Mr. Heusel: The doctor’s assistant.

Ms. Heusel: The pediatrician…

Mr. Heusel: The young physician that delivered. He was like an understudy.

Ms. Heusel: They went into a group, like a huddle—they looked like they were in a football huddle—away from us and were whispering about the situation, and then all of them left the room and did not come back—Emilia wasn’t even bathed yet—did not come back for two hours.

Mr. Heusel: Presvytera, I changed my wife’s sheets in our hospital room. I went out. They all left, and they acted like it was a tragedy.

Presv. Melanie: Oh my gosh!

Mr. Heusel: The thing that was crazy— And I was… I was sort of overjoyed the whole time, because I just felt like the Lord had said, “Matt, I’m going to hook you up.” And with Emilia, I just felt instant connection. It was just something deep, and they acted like it was a tragedy.

Ms. Heusel: Like she was stillborn.

Mr. Heusel: And my poor wife is lying there. I went to their closets and they watched me. I got out the stuff and changed my wife’s bed and helped her.

Ms. Heusel: He helped me to shower; he helped me clean up. We washed Emilia and got her cleaned up.

Presv. Melanie: Oh my goodness.

Ms. Heusel: My sister was there also, and she helped, but they didn’t come back for hours. They treated… And they moved us to a different room, because they moved us away from the other parents that had babies.

Presv. Melanie: Whoa.

Ms. Heusel: It was a pretty harrowing experience. And then the nurses and staff that were coming in, giving us information about Down Syndrome, it was like information from the 1950s. It was so… And you know how you are after you’ve had a baby: You’ve lost a lot of blood, you’re not in your right mind…

Mr. Heusel: Louise was worried, upset…

Ms. Heusel: I was just… They took her. She was nursing really well at first, and then they took her away from me for about eight hours the second day, and when they brought her back she was jaundiced. And then they released us from the hospital with her being jaundiced. Luckily, we have amazing pediatricians, and we went to the pediatrician not the next day but the following day, and they readmitted us to a different hospital. We went to a different hospital, and they were wonderful with us there, really wonderful. And she bounced right back. It took me a long time to get her back to nursing, which I blame the hospital for that, because you know when you get the nipple confusion between the breastfeeding and the bottle—it’s certainly easier to eat with the bottle than it is to nurse—but she did go back to nursing, and she’s an amazing little girl. She was a fighter.

I was working for that hospital at the time, and so when I came back to work after maternity leave, I called up the person that was in charge of patient complaints, who happened to have been a patient of mine, so I knew her very well. And I said, “I need to tell you about my experience in the hospital. This can never happen to another person again.”

Mr. Heusel: She lit them up, didn’t you, hon?

Ms. Heusel: Oh yeah. [Laughter] I was calm, though, then. It had been twelve weeks, so I was a little calmer. I’m glad I didn’t do it right away, because I would have not been able to say it the right way. I just told them about the staff needed to be retrained, that doctor should not be delivering babies, or he needs to learn the right way to treat people. I told them that he was pressuring me to have an abortion. And he no longer delivers babies.

Presv. Melanie: Wow.

Ms. Heusel: He’s still an OB. It wasn’t taken away from him or anything like that, and I know that the entire staff was retrained.

Presv. Melanie: Well, thank God you spoke up. I just have to ask, I’m wondering, when he was pressuring you during the time, were there few options to you to go? Could have you changed OBs? Why did you stay with him?

Ms. Heusel: It would have been really hard to change OBs. There’s not that many in the area.

Mr. Heusel: Due to health insurance.

Ms. Heusel: And I would have had to switch hospitals. I think there was only one other OB at that hospital. But it would have been hard to switch. We had debated on switching out of Wheeling, well, out of the valley, and going to Pittsburgh. My sister lives in Pittsburgh, and she had talked to her OB about whether or not I could come up there and deliver. It just would have been a huge expense, because it would have been out of pocket.

Mr. Heusel: We wouldn’t have been covered with our insurance, yeah.

Presv. Melanie: Got it. Okay, makes sense. So, unfortunately this happens to families all the time. I have a similar story, but I didn’t feel as intensely pressured as you were. I remember the reaction when we found out at our first ultrasound that Michael had—possibly had Down Syndrome because of some of the markers on the ultrasound and because he had an AV canal defect in his heart, and that was very common in people with Down Syndrome. So immediately there was a tragedy kind of feeling to the way the medical practitioners reacted. The directive came to us: “You must make a decision. You have to make a decision now.” We knew what that meant.

They were apologizing as if we had experienced a tragedy, and of course I felt sadness for my child having health issues, there’s no question, but part of what hurts me in this situation is that the medical people are the people that we look to for advice when we’re in these situations, and if someone doesn’t have the same convictions or doesn’t realize that this life with your child can be so blessed and beautiful doesn’t even give it a chance, they’re looking at this doctor as the person with the answers, and could be very easily misled.

Mr. Heusel: Absolutely.

Presv. Melanie: Oh my goodness. I’m sorry that you had to go through so much with that. But I love how you said, Matt, that you were overjoyed. In spite of all of that, you still felt joy.

Mr. Heusel: I just felt… The first time when they said that 2-5% chance, for some reason I knew that Emilia was going to have Down Syndrome; I just felt, for sure. I just felt such peace and joy about it. We have had a connection, Emilia and I, pretty strong, ever since her birth. One thing that came to mind early for me was I felt like my many shortcomings as a husband and parent, and father, and one thing that is cool about Emilia is that her big sisters look out for her. The fact that… I guess you can teach your kids empathy through how you act and how you treat others, but also it’s this sweet little lady that her big sisters look out for. It’s like the Lord built in several little dynamics there that take a lot. [Laughter] It doesn’t matter what crappy job I do. Just Emilia in and of herself is such a blessing that it lessens some outside influences and things that you would perhaps be worried about or if you’re doing the right thing. It’s sort of all in together, and it’s just sort of an overall blessing of child and parent raising.

Presv. Melanie: That’s beautiful. Thank you for sharing that. When a situation in a family arises, it naturally bears that fruit, of creating empathy.

Mr. Heusel: For sure.

Presv. Melanie: That shared experience with one another. It’s one of the gifts, for sure. So I don’t know, do you want to talk any more about—I know you’re passionate about exposing problems in the medical system. You can talk more about that if you like, or we can move on to more personal issues related to your family.

Ms. Heusel: I think that we are very fortunate that we had a very negative beginning experience, but following that we have really unbelievably wonderful pediatricians who marvel at Emilia. They’re just always like: “She just speaks so well! She’s working hard.” So I would say that we haven’t had many problems after that initial experience. I know that I walked into our two-week appointment and I said, “So when do we start birth-to-three?” And they said, “Well, usually we sign people up around three months,” and I said, “No, it’s called birth-to-three,” so she started with speech therapy, but we were working on feeding stuff at three weeks. She had a PT, even though I’m a physical therapist; she had a pediatric… I work with old people! [Laughter] Babies are not my forte.

Mr. Heusel: You would think that I could get some physical therapy, but, no, Presvytera.

Ms. Heusel: Oh, I’ve given you plenty of physical therapy!

Mr. Heusel: Ten minutes total!

Ms. Heusel: That is not true. But that little piece of a negative experience really has not been the majority of our experience.

Presv. Melanie: Thank goodness. The prayer for all of us is to try to uplift that each child is created in the image of God, that each has a special purpose in this life, and each is unique. Unfortunately, society’s holding up certain values that are only reflection of the type of gifts people could have, and when we stomp out any other possibilities, we miss out. I feel that… I’m glad that you both spoke about it, because there are children’s lives that could enrich life in so many ways that aren’t given that chance to do so.

Mr. Heusel: So, Presvytera, I’m sure you see this with your son, but everybody has their qualities, and we all have different qualities, and we all have different shortcomings. Everybody’s the same in that regard.

Presv. Melanie: Exactly. So describe your family. What is life like in the Heusel household?

Ms. Heusel: [Laughter] Hectic, but good. I will say that we are a busy family, although the pandemic really slowed us down. I will say that the first couple months of the pandemic were beautiful for us. It was beautiful to be home. Matt was teaching from home, and I was…

Mr. Heusel: All the gigs got canceled.

Ms. Heusel: All his musician’s gigs got canceled, and the girls were all doing school from home, and I was laid off. So we had six full weeks of the family in the house, and it was wonderful, absolutely wonderful. But for the majority of time we are a busy family, with three girls. One’s starting high school pretty soon—I can’t believe it.

Mr. Heusel: Helen, our oldest.

Ms. Heusel: I would say that the girls work together. Emilia taught, like Matt was saying, Emilia taught our girls empathy. They know that they have to slow down and help Emilia along when she needs help, and they don’t question it; they just do it, because it’s their whole lives they’ve done it.

Mr. Heusel: And they enjoy it, just being with Emilia.

Ms. Heusel: Yeah, Emilia is part of what we do. So for instance, this morning, we’re getting ready for church and trying to get out the door. The sisters all walked out together. They made sure that they were all going together. Then they got in the back seat, and Hannah buckled Emilia into her seat, and then they made sure Emilia had her little activities that she has in church. They’re good about helping to keep her occupied at times in church.

Presv. Melanie: And they just sort of naturally have done that on their own? They’ve figured out ways to help?

Ms. Heusel: They do. We rarely have to tell them to do something. They just do. They just help.

Presv. Melanie: That’s beautiful.

Mr. Heusel: In regards to Emilia, for sure. We have to tell them…

Ms. Heusel: Maybe not making their beds…

Mr. Heusel: [Laughter] Oh yeah, we’ve got to do all that! That’s normal.

Ms. Heusel: Our house is not clean, but that’s okay. It’s lived-in, for sure.

Mr. Heusel: And Emilia… I’ve always just played music. Emilia’s always wanting to rock a mic, and that’s hilarious, because the girls like to sing and things. So she’ll do—my band, the Train Jumpers, she knows all the Train Jumper songs. She’ll sing in key, but the hilarious thing that I like to do lately is I just like to watch, to let Emilia go instead of corralling her all the time like Louise wants to do, like my sweet wife wants me to do. [Laughter]

Ms. Heusel: I don’t want her to be interfering.

Mr. Heusel: I like to be less… I like to not corral as much. So the other night at this big party, she was just going around from table to table, introducing herself to everyone. But I was back. I was keeping an eye on her the whole time. But her new favorite thing to do that drives my wife crazy—but it’s hilarious, Presvytera; you would get a kick out of—so all of our girls that Fr. Demetrios’ daughters…

Ms. Heusel: We have a youth girl choir.

Mr. Heusel: And they do a great job chanting, so chanting at the end, while everyone comes up for a blessing, they’re still chanting, and then they’ll stop, and then the mic is kind of free, and that’s when Emilia will just head for the mic lately. [Laughter] She’s been rocking some Christos anesti on my…

Ms. Heusel: This morning she sang St. Mary of Egypt song, from Gigi Hadid, and she was singing it on the mic. I let her do it, because she wasn’t… It was softly; she wasn’t screaming on the mic. Then I was like: “Okay, you’re done. You’ve had your solo.” [Laughter]

Presv. Melanie: She’s offering her gift, too, and she seizes the moment!

Mr. Heusel: It’s a joyful moment. If there’s a mic without someone in front of it, man… That’s calling her name right there.

Presv. Melanie: That’s so cute!

Mr. Heusel: I guess she likes it.

Presv. Melanie: So how have you as parents been… maybe an example of ways that you’ve been challenged in raising Emilia? I think a challenge is a blessing, too, but challenges and blessings in your experience as parents?

Ms. Heusel: Well, Emilia can be challenging because any time we take her anywhere, we have to have one hand and two eyes on her at all times, because she will… She’s just impulsive, and she will take off on us at times. She hasn’t done it in a while in church, but we’ve lost her multiple times in church. Like, our building that our church is in is huge, and she used to just take off if we weren’t… If I didn’t have… Like if someone tried to talk to me at coffee hour, I could never do that. Could never talk to anybody at coffee hour. I had to be with her. If I even took my eyes off of her for five minutes, she would go somewhere! And I found her from the attic to the basement, and everywhere in between.

Mr. Heusel: In this huge building.

Ms. Heusel: It’s an over a hundred-year-old building. One time, after vacation church school, I was helping clean up, and I thought she was playing with something near me. She I guess lost interest in it, and she left, and she walked out of the room that we were in, which was the hall, and through the Philoptochos room and through the Sunday school rooms, which is clear on the other side of the building, then behind the church—which she’s never been behind the church before, behind the altar.

Mr. Heusel: Down some steps in the dark.

Ms. Heusel: It was dark.

Mr. Heusel: Then fell.

Ms. Heusel: Then fell down the steps.

Presv. Melanie: Ohh!

Ms. Heusel: And somehow I found her—someone leading me, because why would I even look there? She was fine. She had just skinned her knee a little bit, nothing major, but she… So that is a challenge. That is a challenge, of course, to make sure that I always know where she is and what she’s doing. She’s so much bigger and so much heavier than she was in the past. In the past, I could just carry her wherever I needed to carry her, and now I can’t really. She weighs 80 pounds, and I can’t really carry her any more. She’s way… I’m not very tall, so she’s almost as tall as [I am], so that is a big challenge for me. And especially when we’re in a big group of people…

Presv. Melanie: Yeah, your heart sinks, not knowing is she safe, where could she have gone, and just that. Yeah.

Mr. Heusel: You know, another challenge that’s more of an annoyance. You’re up against the bean-counter mentality of some folks, whether it’s a special education official or a person that’s going to generalize your child based on what they think Down Syndrome is or what they think your child can accomplish, or they’re going to make decisions based upon some kind of black-and-white perceived data that they come up with. That’s more of an annoyance than a challenge.

Ms. Heusel: Well, it’s a challenge. It was a challenge for us this year, because the county decided that they were going to switch Emilia’s school from a school that we love and teachers and a principal that we just find amazing to a different school and put her in a life skills class. They were going to split time between a life skills class, and we had to fight that, of course. She will stay where she’s at, and she’ll still be on an academic path. I just said, “I’m going to teach my child life skills at home. I don’t need you to do that. I need you to teach my child how to read, write, and do arithmetic.” That’s something that we… I think that every child has the ability to learn, and I think that it’s a crime that they want to cut someone off at nine years old and decide that they’re not able to learn and they’re not willing to teach them any more.

Presv. Melanie: Right. As parents we know that we don’t want to put those limitations on our children, and we also have to advocate. It’s hard, and I think that’s been a challenge for me, as someone who doesn’t like to have confrontation, to have to advocate a lot for my child, for what I believe is in his best interest. Like you said, Matt, it’s painful when your child is seen as something on paper, not the human being they are with all their gifts. Sometimes IEP meetings can be painful, because all they do is list the goals and what they have and haven’t accomplished as far as goals, and you’re like: I know my child has gifts; this is not who he is.

Ms. Heusel: That’s not all they are. Basically, they did an IQ test on her this year and placed her very low-functioning range, and they’re going to base everything they’re going to do with her from now on based on that. I just feel like it’s so unfair to our children to even give them an IQ test. We don’t IQ typical children; why do we IQ children who need extra help? Every child has the ability to learn and to grow. Why are we try to pigeon-hole or cause them… or stagnate them?

Mr. Heusel: But all that being said, Presvytera, we’ve really… We’ve been blessed with some wonderful teachers for Emilia.

Ms. Heusel: We have wonderful teachers.

Mr. Heusel: This great young lady, she’s been a real lady. But anyway, she’s wonderful, and her whole team. There’s been a lot of blessings in there, with those challenges that you just mentioned that are going to continue, of course.

Ms. Heusel: She’s young and she’s fired up, you know what I mean? And she’s a Christian…

Presv. Melanie: I agree. Even though the system can kind of create challenges for our situations, the people who work, the teachers, the educators—I have had so many beautiful people I have been blessed to come to know, because of being Michael’s teacher or therapist. They’re angels. The bureaucratic end of things is kind of hard.

Mr. Heusel: That’s well said.

Presv. Melanie: So you talked a little bit… It sounded like you are all very active in the life of your church community. How do you see Emilia blessing your fellow parishioners’ lives?

Ms. Heusel: She’s the ambassador! [Laughter] She is. She’s never not spoken to somebody. She just walks up to somebody and says, “Hi, my name’s Emilia. What’s your name?” I’ve met so many people that are guests to our parish—they’re just there for the day—because Emilia goes up and talks to them. If she sees somebody who looks a little bit sad, she immediately walks over to them and talks to them, and I think just brings them to someone else. She just always seems to be able to talk to everyone and make people smile. Some of the older folks in our church, she’ll walk them up to receive their blessing at the end of the church.

Mr. Heusel: Trying to grab two pieces of antidoron at the end… Crafty.

Ms. Heusel: [Laughter] I think she’s taking people up to Father at the end of church just so she can get an extra piece, but Father always gives her an extra piece anyways.

Presv. Melanie: [Laughter] Very smart. That’s cute. But it sounds like not only does she like people, but she likes to connect people to one another. That’s really amazing. That’s sweet. So maybe in parting you can offer some words of encouragement or advice for families who are new to this journey, maybe just learning of a diagnosis of Down Syndrome?

Mr. Heusel: I would just say, boy, just feel blessed. Those challenges… For any child, there’s so much worry and there’s so many challenges, and it’s no different having a child with Down Syndrome, but so much other great things. And as you learn about things together, it’s just… I think you find your community and you find your people that are in the same boat as you. It helps you with your faith because we’re just trusting all the while, like anybody would be doing, so I don’t think it’s anything different from anything else. I would just say there’s no differences, just all the good times…

Ms. Heusel: There is difference.

Mr. Heusel: There is difference, but…

Ms. Heusel: It’s a blessing, and it’s not something to be sad about. It’s not… Your child… It’s not the end of your child; it’s the beginning of your child, the diagnosis. It’s not what people fear it is.

Presv. Melanie: So in many ways I think what you both said, there are some unique issues that arise, but at the same time there is an overarching similarity, that maybe the challenges themselves are different for a child with a disability, but, for instance, I know I have challenges with Michael, but my challenges may be different. He’s a teenager, but I don’t have to worry about the circles he’s running around with, if he’s going to get involved in something that’s going to be harmful for him spiritually or physically. I have different concerns for his life. Whereas other parents with teenagers who are typically developing might be more worried about the salvation of the soul, I know he’s safe in that regard. So it kind of evens out in different ways.

Mr. Heusel: That’s what I’m saying. We’re all concerned about our kids, in just different ways. I would say just fully embracing that, and also the fact that if you have a child with Down Syndrome, that’s what the Lord Jesus wants for you. That’s going to be to your benefit.

Presv. Melanie: He knows. He knows what we need, and he knows what can give us a full life.

Ms. Heusel: She’s an amazing little girl with amazing talents, and that’s a wonderful thing. She’s blessed our family, for sure.

Presv. Melanie: Thank you. Thank you both so much. It’s been a real pleasure.