Fr. Alex Goussetis: Welcome to Family Matters. My name is Fr. Alex Goussetis, and today I’m speaking with Presvytera Melanie DiStefano. We’re introducing an offshoot to this podcast series that we are titling, “Family Matters: Fully Human Edition.”
But first, let’s revisit some background material. Presvytera Melanie joined the Center for Family Care as Resource Developer in 2019. She graduated from Youngstown State University with a bachelor’s of chemical engineering and from Holy Cross Greek Orthodox School of Theology with an MDiv in 2003. Married to Fr. Joseph DiStefano for nearly 18 years, they have one teenage son, Michael Seraphim. Together they serve St. Nicholas Greek Orthodox Church in Youngstown, Ohio.
Michael has multiple special needs that impact his health and his level of independence. One of her goals is to reach out to other families who are facing similar parenting challenges in order to provide faith-based perspectives, resources, and overall encouragement in their unique walk with Christ. Presvytera, you have a personal connection to leading the Fully Human ministry through your son, Michael. Why don’t you tell us a little bit about your journey?
Presvytera Melanie DiStefano: Yes, thank you, Fr. Alex. I’m always happy to talk about Michael. Our Michael is almost 17 years old now, and it’s been a roller-coaster ride of emotions and challenges and blessings and gifts. Having Michael has been the greatest teaching experience or learning experience of my life. Michael has medical issues and health issues. He was a premature baby, very premature at 28 weeks, and has Trisomy 21, or Down Syndrome, and autism. At one point, one doctor even diagnosed him with tens of diagnoses, so it can be overwhelming, and I think what’s beautiful about our life in Christ is that it’s so focused on Christ that any challenge we have is brought before him. And it’s not that we always handle them well or know what to do.
And I think part of why I am anxious to get this podcast going is because I know how I felt when Michael was initially diagnosed with autism. I mean, we had already known about the Down Syndrome and his other health issues, but it was sort of the breaking point, and I wanted to know: What did my Church say about this? And theologically, how do we look at this? And I think we’ve been blessed, as a priest family, we’ve been welcomed because we’re the priest’s family, so I haven’t experienced as much maybe exclusion, intentional exclusion, as other families might. But there is an isolation that comes with special needs, just because of the nature of them: the health issues, sensory issues, that just make being part of a community, in a full way, with all the experiences of community life, difficult.
So that isolation can be very challenging for families, and I wanted to reach out more in this ministry to other families going through similar experiences.
Fr. Alex: You and Fr. Joseph are both theologically trained. Faith is obviously important to both of you. How would you say that faith informs you regarding the raising of Michael and how your faith has been deepened as a result?
Presv. Melanie: I think the way it informs us is that we take all of our questions to the Lord. I pray for God to reveal to me ways to help Michael, how to improve his life, what medical models do I follow, and where do I go with his diet—just over any detail, I pray about it and I ask Christ to lead me, and Father does as well. We pray for guidance; we pray for patience when we don’t understand Michael’s behavior. So I think just… it makes us more dependent—I guess we realize more our dependence on God because of our special situation. I think if I had a child that didn’t have cognitive issues, I might not be as inclined to look more reflectively at my lack of patience or that kind of thing. So it’s deepened my faith, too, because I’ve been forced to confront things about myself that I’m not proud of, because they’ve kind of risen up in our experiences with Michael.
And because we know that we need God, because so much of his care is complex and it’s hard to sort through, it’s a daily question to God to just guide us and help us to give Michael the best life possible.
Fr. Alex: You mentioned a moment ago about the church community supporting you as the priest’s family and so forth. In a general way, how do you feel the church communities that you’ve served have supported you, and maybe where are some of the gaps in support from the church over the years?
Presv. Melanie: So I just… Every church community we’ve been a part of have been very supportive and welcoming to us and to Michael, loving, embracing. I think maybe, just in my own experience, the gaps are that maybe church communities don’t know how always to include people who have a disability, especially cognitive. Sunday school can be, you know… Michael’s left out of Sunday school programs, not because of intentional exclusion; just because it’s really hard for Sunday school teachers who are just trying to do the best lesson they can to figure out how to be inclusive sometimes. And also on my own part. I just probably didn’t give Michael enough of a chance at certain times to include him more. But sometimes it’s just the forgetfulness or maybe not knowing if… would Michael like to be in a dance troupe? That would have been a nice question to hear at one of our communities. It would be nice to be approached, because sometimes I don’t want to put that on another person, although I would always be there to help. It would be nice to be asked: Does Michael want to be in a dance troupe? We can have him wave the Greek flag. Things like that. So maybe that is where I see, maybe a little bit [of] reluctance in trying to be more assertive in inclusion.
Fr. Alex: Let’s move into the Fully Human ministry that you have launched within the Center for Family Care. How was it conceived and brought to life?
Presv. Melanie: So after working for the Center for Family Care for about a year and doing some presentations on ministering to families with special needs, and just in general hearing feedback from priests and other professionals who minister, and then looking at social media support groups for Orthodox families with special needs and seeing comments by parents and caregivers, it just became so clear to me that there was a great need for more encouragement, more support, and more work toward meaningful inclusion for all people. I’m in a position now that I can help do a part of that, so when I brought up the issue, because we have a small staff, what we decided as a staff is that we can manage an online sort of food, spiritual food, in the way of every two weeks, based on a saint’s wisdom or scriptural wisdom, that would be specific to people with disabilities or their caregivers, just as a way of encouraging that walk, that special walk with Christ.
Once we introduced it, actually with the help of—I have to give kudos to Mari McMullen, because she came up with a beautiful graphic of four saints who have disabilities, four Orthodox saints that we use in our graphic—and when we introduced this, the feedback was so overwhelming that now we have 14 people on a steering group, and instead of it just being a social media ministry, this is becoming something where we can expand, because we have more resources, and we can expand our efforts, and it’s really encouraging.
Fr. Alex: So now, through this steering committee, it provides a structure, it provides kind of staffing, it provides feedback in a loop for people to kind of share their ideas about this. So this is a very good team that you have in place to help bring about work in this ministry. What are your hopes about what can be accomplished?
Presv. Melanie: Oh boy! I think, hopes… The sky’s the limit, right, when you hope with Christ what can be accomplished. I just hope that we and our efforts are pleasing to the Lord, that we, one, connect the experience of people with disabilities and caregivers to the common human experience for others. So that’s one hope, is that sometimes we’re looked at as different, when we all share a common human experience, and that’s my hope, that that really comes through.
I also hope that it encourages—these ministries help encourage anyone who has a disability. And might I add that I think all of us have some disability, maybe more obvious than others. We define “disability” as something that has an outward significance usually in our minds, but we all have struggles and challenges. So I guess validating that some disabilities need a little more attention or can be a little more challenging. So to help encourage that in the community, in the church communities.
And then help the faithful in our Orthodox communities to better understand, to not fear people with disabilities, and to see us as human and to see our families for the beauty that is within them, to see the gifts. And also, I mean this is really important, we know that, especially as parents and caregivers of people with disabilities, we know that our children have special gifts that might not be… that are just very unique, that might not be common, and when they’re not included in meaningful ways within the wider community, we miss out on those beautiful gifts, and the rest of the community misses out on those beautiful gifts.
Fr. Alex: Absolutely, because, especially the families are a part of the body of Christ, and so they also have much to offer and many ways that they can serve as well. So the response has been very positive so far. You’ve established some leadership, a steering committee, social media support and encouragement. You’re looking to do a monthly podcast that we spoke about, “Family Matters: Fully Human Edition.” What’s the format that you’re looking to do, types of interviews? What can people expect to hear?
Presv. Melanie: So people can expect to hear stories. I think that there may be times that we share resources, we share ideas for church resources, but I’m going to focus on allowing the story to unfold for each person that is interviewed. We have a steering committee of 14 people, and many of them already are willing to be interviewed, and I want each of them to share their stories, because the disabilities are vast in their range, the experiences are very different and unique, and who knows who can be encouraged by hearing each of our stories? And I think that that, just in itself, will be uplifting and help dispel stigma—and there is a lot of stigma and even shame that comes along with some of our cultural ways of looking at disability, and I hope that in these interviews we can help dispel some of that.
Fr. Alex: So there are many individuals and families who are listening right now that are part of special needs families and systems. How can they get involved? How can they give feedback to the type of ministry that you’re launching?
Presv. Melanie: Well, you can contact me at the Center for Family Care. If you go to the GOARCH website, we are under the departments, for family care, and you can find my contact information there. It’s easy as far as email: presmelanie@goarch.org. You can also visit our website, the Center for Family Care website, and Facebook: like us and follow us on Facebook, and share our resources. Every two weeks we share the Fully Human resources and, once we start doing podcasts, we’ll be sharing them as well on social media.
Fr. Alex: Good. Let me just underscore them again. Our website is family.goarch.org. Presvytera Melanie can be reached at presmelanie—p-r-e-s-m-e-l-a-n-i-e@goarch.org. And again, through our Facebook page, there are posts as well. So we look forward to expanding the Family Matters podcast series by launching “Family Matters: Fully Human Edition,” that will be hosted by Presvytera Melanie, so please look for it on Ancient Faith Radio.
Arms Open Wide 
