Presvytera Melanie DiStefano: Welcome to Family Matters: Fully Human Edition. My name is Melanie DiStefano, and I am excited to be speaking with two members of the Fully Human steering committee, who are also founders and organizers of a disability family ministry at their home parish. They are Eleni Anast and Abby Vlahos. Here’s a bit of background on each.

Eleni Anast is originally from the Twin Cities in Minnesota, and now resides in Mount Prospect, Illinois, with her husband of 19 years, Philip, and their two children, Christina and Constantine. She’s a member of St. John the Baptist Greek Orthodox Church. Eleni has a bachelor’s degree in biology from the University of Minnesota, a master’s of public health and epidemiology, also from the University of Minnesota, and is currently pursuing her doctorate of public health and leadership from the University of Illinois Chicago. She has been working as an applied public health researcher for over 20 years, and runs a large urban health research institute in Chicago that focuses on better understanding and addressing health inequities.

Eleni co-chaired the Metropolis of Chicago Family Synaxis Ministry for 13 years, serves on the school board of Guardian Angel Orthodox Day School, and most recently helped establish a ministry for families of children with disabilities, the one we’ll be speaking about today, at her parish of St. John the Baptist.

Abby Vlahos and her husband Peter and their three children live in Chicago, Illinois, where they are stewards at St. John the Baptist Greek Orthodox Church in Des Plaines, Illinois. Professionally, Abby is the development director for a Chicago-area non-profit that provides mental health services to children from underserved communities. Personally, she cares deeply about raising her children to have a love for God and neighbor. That effort has led to her involvement in many ministries at her parish, including being part of growing an Orthodox Christian parochial school where her two oldest children attended. In the last five years, the family has been on a new adventure after their youngest child, Cosmas, was diagnosed with a rare genetic syndrome, resulting in significant life-long disabilities.

Eleni and Abby are long-time friends, members of the same Orthodox church, koumbari, and most recently both parents of children with disabilities, in that chronological order. So starting a ministry together for families with a child with disabilities was a very natural next step in their relationship. Welcome, ladies!

Ms. Abby Vlahos: Thank you, Presvytera.

Presv. Melanie: So we talked about how it was a natural next step for you to start this ministry together because of your shared experience and your friendship over the years. Is there anything else you would add to describing why you decided to start it now?

Ms. Eleni Anast: I think it’s something Abby and I had both been thinking about for a while and praying about. My journey in having a child with disabilities started a little bit before Abby’s, so my daughter is ten, and she has an autism diagnosis. First of all, I want to say my daughter participates a lot more fully in the life of the Church. She loves church. She loves being in church. It’s not always easy for her to be there, but it does draw her in. So I really wanted to think about what we could do to make that experience easier for our family.

But then as I started to think about all that, Abby’s own journey with a child with disabilities began, and I began to become more acquainted with some of the other families within our own parish that have children, adult and younger, who have disabilities, and thought that I’m a little bit further along in my journey now, and I think that this is a time where I can give of my talents in this particular way. So all of us are fully children of God, regardless of what our physical or mental disabilities may be. We all have souls that need to be nurtured and nourished. Coming up with opportunities for children to be more involved in church, it provides our children and our adults with disabilities that opportunity to grow in their relationship with God. Also in my experiences, [these] provide so much to the rest of those who are touched by those people.

For me I think it was equally supporting the children, supporting their parents who often are challenged in being able to participate the way they envisioned they would be able to, or have prior to this time participated in the life of the Church and the parish, so supporting those families and being able to do that more seamlessly, but also recognizing that it is to the benefit of the entire parish that we embrace every single member of our community and become more comfortable with people who might present in a different way. Both of those I think were my motivations.

Presv. Melanie: One of the beautiful things I’ve realized is how everybody is fed when everyone’s included. Would you add anything to the whys, Abby?

Ms. Vlahos: I would. I guess my whys may be somewhat like Eleni’s, but a little bit more personal. I think since Cosmas was born—he’s about five now—I’ve just really struggled with just how to connect to parish life, given his needs. And for the 15 years before that, I’d say that our parish was really the center of our family life. We were really literally there seven days a week, for school or sports or fellowship, and of course for services. I’m from a clergy family myself, so that kind of strong connection to the Church is in my DNA, and jumping in to help with whatever’s needed is something that’s given me a great deal of joy and connection.

Although we didn’t know that Cosmas had a genetic syndrome until he was about a year and a half, you could say that he was a pretty high-needs baby, so even pretty early on, as an infant he took a lot of my time and attention. And now at five, he’s a big handful, very active, and services are hard. Honestly, most ministries of the church are just not possible, even things like coffee hour. So I’m still trying to figure out what connection to my church and even my spiritual life looks like going forward. I know all children change, and so of course he will grow and change, but what is certain is that he’ll need full-time care his whole life. So part of this ministry for me is very much figuring out: How do I continue to have a connection to the Church? And, happily, there are others who are trying to do the same thing, and creating new ways of connection can also benefit others. So that’s a big part of why I wanted to also work together with Eleni to start something for families.

Presv. Melanie: Thank you. I think that background will be helpful for a lot of people to know. How have you worked together with your parish priest in structuring this ministry?

Ms. Anast: We are very blessed to have a parish priest who gets it. I wouldn’t say that he personally gets it—he does not have this experience of having a child with a disability—but he’s both Abby’s and my spiritual father and has been part of our life journeys for the past many, many years. He’s very much a part of our family, and I think through that experience, and with others at our parish.

There was a young man at our parish who fell asleep in the Lord about a year ago in his early 20s, and he was autistic and also had some other disabilities. His mother brought him to the church, and she was not shy about doing that. It wasn’t easy for her. She didn’t bring him every single— She had challenges doing that, so it wasn’t that he was always there, but when he was there he was there, and he was engaging with people. Our whole community, I think, began to grow in understanding the importance of being there for people with disabilities and families with disabilities, and especially I would say our parish priest. He was very much a part of that man’s life and his mother’s life, so by the time Abby and I came to this point of saying, “We want to—” We invigorate this ministry because it had started as a ministry for children and their parents, more like a parent-child sort of feel was the way it began about 20 years ago, and this mother was instrumental in starting that ministry. We’d already had that foundation, and then it had been on pause for a while.

So when Abby and I began talking about wanting to restart it and refocus it a bit to be beyond that parent-child relationship and also incorporate people who might be older and have disabilities into the ministry, he was very receptive. I don’t think we had to do much more than say, “We want to do this,” and he was sending us podcasts and all sorts of things that were resources that he was coming across, and of course praying with us and supporting us and beginning to lay those seeds, and then encouraging us to just start, which I think in the end was the push we needed: to just start. He was pushing us to continue to build.

Presv. Melanie: Wow. That is such a blessing! I mean, the first thing I think of is that the mom and the son you spoke of really were pioneers in paving a way. Sometimes that’s really hard for us, to be the trend-setters and to be the ones that are pioneering through when we feel so different with our children, but when we do, look at what it leads to. It leads to this comfort, this understanding, of both the priest and the wider community, and then other people who are experiencing similar issues can feel more comfortable within that community.

Presv. Melanie: Tell us a little bit about the format of your gathering.

Ms. Vlahos: Well, we were definitely inspired by a podcast you did, Presvytera, with the church in Ohio that has—is it the St. Matrona?

Presv. Melanie: St. Matrona Miracles of God Ministry that Presv. Elaine Stavropoulos instituted.

Ms. Vlahos: Yes. I think one of the things that struck both Eleni and [me] was that it was a pretty simple format. It seemed like: Hey! We could do that! It doesn’t have to be rocket science. We can do something that blesses families without, I don’t know, a great deal of planning and preparation. Just get families together simply. Get families together. Eleni mentioned that the ministry, as it had been conceived many years ago, had that parent-and-child feel, and we thought of it a little bit differently, as ministering to parents more.

So the format is about an hour and a half on a Saturday afternoon. The first hour, the children—and the children who come are actually as young as three and as old as 46, so the participants with disabilities are each paired with a volunteer, and they spend time in our— We have a nice gym, and we just hand out some very simple musical instruments, Play-Doh, Legos, balls, parachutes. Basically, it’s self-directed play for the participants, with a volunteer so that they’re safe and engaged as they want to be engaged.

Then during that hour, the parents are able to have uninterrupted—kind of, mostly [Laughter]—time for fellowship in another room, where we… So far we’ve had speakers, we’ve had a priest leading it, or we’ve just had discussion amongst ourselves about a topic. Honestly, it can just be super simple and still be really lovely. I mean, every time I think, “Okay, how’s this going to go?” I’m like: Wow! You know what, we just want to sit around the table and share and have an opportunity to be with like-minded people.

And we do try to keep the topics around… I mean, there is a lot of support for parents with disabilities, or I should say, maybe not so [much] “support.” What I mean is, you can find information you’re looking for, but maybe not from an Orthodox Christian perspective. What is it to have…? What’s different about your spiritual life? How do you stay connected to the Church? How have you grown in your spiritual life? I think we’re keeping the topics around faith, because, really, there is no other place to get that.

And then after that hour, we have about a half an hour where we go into the church and have a paraklesis that is: Be as loud as you want. Move around, run around: just be in church. So that’s the format that we started really at the beginning of 2022, and has served us well so far. I think it’s been a benefit to the families who have participated.

Presv. Melanie: So how often do you meet?

Ms. Anast: We’re trying to do it monthly, and we have done a couple of other things. We’ve also thought about: How could we do a little bit more social event as well? So we did do a picnic in May or June; I don’t remember exactly when. We still had buddies and we still had volunteers supporting, but it was a little bit more family-focused and so had more ample time for fellowship, which was really nice and lovely. We’re hoping to do more of a Nativity—pre-Nativity, but celebration of the Nativity—coming up here. So, about monthly.

Presv. Melanie: My question then: You must have a large parish to have a pool of volunteers to be buddied up with everyone who attends? I’m just wondering how you find the people, because that would be my biggest challenge, I think, if I were trying to do this in my parish.

Ms. Vlahos: That is the most challenging part: recruiting volunteers. We’ve recruited volunteers, not just from our own parish, honestly—through word of mouth we think of people who might have a heart for serving people with disabilities, maybe have that as a career, but most of our volunteers do come from our own parish. They’re as young as middle school and as old as—some senior citizen people have also volunteered: everything in between.

It is challenging. Every month I think, “How are we going to bring this all together?” Thank God, every month it comes together so beautifully. Everyone who volunteers is really… You can just see it’s a beautiful thing for everyone, even if they were a little apprehensive about how it was going to go.

And “disability” is a big tent. You have a person who might not appear disabled all the way to someone who maybe cannot talk, maybe is in a wheelchair. You might feel like: “How am I going to engage?” But it’s pretty amazing how, just by getting in there and trying that you figure it out. And we do try to have people who have special ed backgrounds or therapy backgrounds, so they can help guide or be paired with some of the participants who need more support.

Presv. Melanie: That makes sense. And how do you get the word out? How do you let families know that you’re having it? Have you reached out to neighboring parishes?

Ms. Vlahos: It’s been pretty simple. We’ve shared it on our parish social media; our Philoptochos has helped spread the word. We think of it as a ministry of our own parish, but about half the families are from our parish, and about half are from other—not just other Greek Orthodox parishes, but from other jurisdictions as well. I think it seems to me that the best way of spreading the word is by word of mouth: One family is like: “Hey, I came to this and I go, so come. You’ll know me.”

Presv. Melanie: About how many participants do you have on average? You might have mentioned that.

Ms. Vlahos: We usually get about ten families. All told, with everybody there, it’s more than 50 people, so it does feel like a lot of people, even though it’s about ten families. It feels like a lot. And we’ve had I think about 18 families who have come a couple of times. It usually… Well, our kids are unpredictable, so it doesn’t always work out for families, but that’s about the reach that we’ve had so far, is 18 families participating.

Presv. Melanie: That’s a nice group. So we talked about the challenges. Would you add anything to that, Eleni? Have there been any challenges other than the coordination of volunteers that you’ve come across?

Ms. Anast: I don’t think so at this point. I think I see some opportunities as we move forward. I think we started here, and I think we’ve got a great foundation, and yet I want to make sure our ministry moves on to the inclusion part and making sure that our children and that our families are included in the life of their parish. So that I think is our next step and one that we look forward to taking. But time is a challenge, because I think Abby and I have our own families and children with disabilities, so there’s that piece as well. When you have two people who also have that same challenging life at home, running the ministry, things, as Abby said, come together. It’s amazing how they come together, but it can be a challenge getting there sometimes.

Presv. Melanie: Absolutely.

Ms. Vlahos: I would add, because I think I’ve heard from other Orthodox families who have a child with disabilities, that they say, “Oh, I wish my parish had something,” but really no one’s going to start it except those who care most deeply about it, which is the families of the children with disabilities, who are also the families who have the greatest need for support! So it’s a little bit of a dilemma. I am grateful that I have Eleni to do this with me. I would say that’s for me the key. If I had to do it on my own, it would probably crash and burn because I just couldn’t keep it up, but this way if I am having a hard month, I can lean on Eleni to do a little more, and vice-versa. To me, having a buddy, if you had a small group of people to do it together, I think it’s much more doable.

Presv. Melanie: That’s a great point to make. I think going into this there should be at least two, maybe more, people who are co-chairing such a ministry, because, like you said, there are a lot of stressors in our own families. We need one another’s support, so that makes sense.

Okay, we talked about challenges. What are some of the fruits and the blessings that you’ve seen because of the ministry?

Ms. Anast: We talked about volunteers being a challenge, and it has also been to me one of the most beautiful parts of this ministry, because we’re seeing those relationships forming between the people who are serving as buddies or volunteering and the children and the families who are participating.

For me, one of the big motivators in wanting my child to be more involved in the life of the Church is of course her salvation and that piece, but also that I want her to have a community around her and I want her to form relationships. While it might be more challenging for her to form relationships, she’s very capable of forming them. So her— If I speak about Christina in particular, one of the things that we have done outside of this ministry to start working towards that more inclusive environment is she has a buddy for Sunday school, and that’s been happening now for a couple of years. Before that, I was with her in the classroom.

But last year I really said, “Well, there’s got to be some young adult, some high schooler, who has an interest in special education or social work or wants to explore that more, who may need some community service hours, so let’s see if we can find a buddy.” Thankfully, we were able to find two. And she’s formed these amazing relationships with her buddies and their families that I think is a blessing that is going to continue in her life. It gives me peace to know that she has this growing network around her in the life of the Church and the parish. I think seeing these children and these adults participating in this ministry, forming these relationships with volunteers and their families, has been definitely a blessing.

Presv. Melanie: Abby?

Ms. Vlahos: Yeah, I can add to that. After our first meeting, I went home and told my husband, “That’s the first time I’ve engaged in a ministry at church in many years, and it feels amazing to be a part of it!” So that was a personal benefit. Every time we meet, a family, another parent says something similar to me. “This was just so beautiful. Thank you so much. This was the first time I’ve sat next to my husband without interruption and talked about really important things in years.” So that’s amazing.

I would agree, too— I said that finding volunteers is a challenge, but it’s also really beautiful. And I think sometimes there aren’t surprisingly that many opportunities for true service in our parishes. I mean, we have a lot of ministries and they’re wonderful and important—it’s important to get our kids together—but… I remember that first meeting, walking past the gym and seeing young people from our parish engaged in service, like truly service—they weren’t there for fun, to be with their friends—was amazing! That— I just was like: Yes! We need more of this. So that, to me, was just one of the best parts of the ministry.

Presv. Melanie: I just wanted to comment on something you said, Eleni, that your next step, the opportunity would be to be more inclusive within the wider church community. I can see this being a very natural springboard into that. So the families and children, both young and old children, become more comfortable with the space, and being there in worship becomes more comfortable for everyone. So then it’s just a natural next step, hopefully, for families to be more engaged in the wider life of the parish. So I hope, I pray that that will lead to that. It seems to have done so in other communities that have done similar types of ministries.

Advice to anyone who wants to start a ministry like this in their parish but does not know where to start?

Ms. Anast: I think: Just start. That’s my advice. I think Abby alluded to this earlier, but we had a lot of conversations where we thought, “Oh, we want to do this,” but we wouldn’t… We would feel overwhelmed by all it could be. We would start thinking about the big dream and what we want our parish to look like in ten years, and it was too much. So just take that small piece—for us it was starting this family ministry piece—and start there, and just start. Figure out what you absolutely need to make that first meeting a reality, and do it. Then I think each step beyond that gets easier and easier as you develop the community around the ministry.

I think another thing that we’ve started to see is that, yes, for Abby and [me] at the beginning, it was a lot more on us, but as time has gone on, people have stepped up and volunteered to do things, like bring the snacks, bring the activity that we’re going to do, bring the craft. So it does become easier once you start building up that community, and then you can start thinking about that next piece you can hopefully move towards.

Presv. Melanie: That positive energy kind of starts to inspire people. Abby, anything to add to that?

Ms. Vlahos: No, I think that was well said.

Presv. Melanie: Okay. In closing, what does it mean to you to be fully human?

Ms. Vlahos: I’ll start. I feel like I’ve had a lot of chance to reflect on that because of being part of the steering committee and getting to talk to that group of wonderful people, both people with disabilities themselves or caregivers of someone with disabilities. And we’ve talked about the name, we’ve talked about the mission, so I really feel like the name implies that goal of full participation for people with disabilities in the life of the Church. And, like any good name, you can also kind of flip it around and look at it in different ways. I guess one of the ways that my mind sort of goes to is also that a person with disabilities shows us what it is to be fully human, reveals to us: “I’m fully human,” and what the life in Christ is as well. So I think it’s a good name that will serve this ministry well.

Ms. Anast: I don’t know that I could say it better than that. I think that to me being fully human means understanding that we are created by God and we are on this earth. We may have different abilities and disabilities and strengths and potentials, but in the end it’s all about that union with our Creator and finding that way and that path towards him. That’s going to look different for every person, but that doesn’t make them any less fully human.

Presv. Melanie: Beautifully said, both of you. It’s been really good to hear your story and just pray that the ministry continues to flourish. Thank you both!

Ms. Anast: Thank you.

Ms. Vlahos: Thank you.