Presvytera Melanie DiStefano: Welcome to Family Matters: Fully Human Edition. This is Melanie DiStefano. My guest today has a bachelor’s in business and a master’s in business. He worked in the industrial supply industry for twelve years before going to seminary. He graduated from Holy Cross Greek Orthodox School of Theology in 2005 and has served as a parish priest for almost 17 years. He met his presvytera at Holy Cross; they married in 2003. He has one son, Michael, who was born in 2004. He enjoys reading, fly-fishing, and playing guitar. And he is also my husband, Fr. Joseph DiStefano.

Fr. Joseph DiStefano: Hello!

Presv. Melanie: Welcome, honey.

Fr. Joseph: Good to be here!

Presv. Melanie: We thought for Valentine’s Day, we would do a couples edition, knowing that couples can experience a little bit of strain when there are extra needs that one or more family members has. So we’re just going to talk about some things and see where it goes, not that we have answers—we’ve learned some lessons along the way; we still make lots of mistakes—but maybe something we share could be helpful to other people.

What was the first memory you have of a person with a disability?

Fr. Joseph: Well, two things come to mind. One of them I remember, and the other one I don’t remember. The first experience that I had with someone with disabilities—I was very young, perhaps a toddler, and my mother and I were walking into a store, and there was a man walking into the store ahead of us with crutches, and had a leg amputated. And I was so intrigued by that. I don’t believe by that point I’d ever seen anyone with a limb amputated. So apparently I walked up to him and was crawling around underneath him, trying to find where the leg was and asking questions, and of course my mother was just mortified with embarrassment. I don’t remember that, but she tells that story all the time.

The first memory that I have, though—I’m from Canton, Ohio, and in Canton there is of course the Football Hall of Fame, and every year there was a hall of fame parade, and we would always go; from my earliest memories I went to that parade. And one year, standing next to us was a young man who had Down Syndrome, and he is also someone who had six fingers. I was so captivated by this person throughout the whole parade, just in his comments, just the way he was and acted, not scared by just intrigued by him. And of course I kept staring at his hands: not often you see someone with six fingers. So those are the first, earliest memories that I have. How about you?

Presv. Melanie: The earliest memory I have of somebody with a disability is I used to go to Hills Shopping Center with my mother, and there was an older gentleman who played the accordion at the entrance of Hills, and he was blind. He was like a permanent fixture there all through my childhood, and when I was a teenager and I realized he had passed away and was no longer there, I actually mourned because he became this blessed presence in a way. I was a little bit afraid of him when I was little, because I didn’t really understand: Why can’t he see me? But a lot of little children would talk to him, and he would talk to them. He would play music for everyone. I just— He was part of my childhood, so I remember that.

And I also did have a memory of a friend who a relative who had Down Syndrome who was our age, and I was really afraid of her, to be honest, because her behavior was a little different. She was a little wild, a little aggressive, but playful: not aggressive in a harmful way, just played kind of wildly. So I remember being a little timid around her.

And the reason I wanted to talk about this is because when we first found out that Michael, our son Michael, had Down Syndrome, it was in the first ultrasound we had during the second trimester that revealed some indicators of Down Syndrome. And when the person who was the liaison, the family liaison for the hospital, was talking to us about it, we were kind of waiting for her to talk, and we looked at each other and we smiled.

Fr. Joseph: Yeah. Yeah, we did. I was okay with that. For some reason, from that earliest experience that I had with that man standing next to us, I’ve always had a soft spot for people, especially with Down Syndrome, people with disabilities. And so when we heard the news, that our son was going to have Down Syndrome, I couldn’t help but smile.

Presv. Melanie: We did, and we just knew… And when we smiled at each other—this is how I remember it—you said, “I’ve always liked people with Down Syndrome,” and I said, “I’ve always been scared of them.” [Laughter] And so that was a truth of the matter. And, lo and behold, we have Michael.

What do you think have been some of the most difficult challenges as we raise Michael?

Fr. Joseph: Yeah, the things that come to mind first, one challenge would be we really need to support our spouses so that they don’t become overwhelmed, that care for children with disabilities. There’s a lot of care, and traditional roles in the house—doing dishes, doing laundry, and all that kind of stuff… I’m not saying I’m good at these, but I recognize that there is a need to support Melanie, so the work gets done and she doesn’t feel overwhelmed. So that’s one challenge.

Another one is just making the right decisions that center around the well-being of our child. There’s a challenge to that because we don’t know what’s best a lot of times, and we’re always sort of guessing. Our particular son, Michael, is not verbal, and we don’t always know, so we have to make right decisions, and a lot of times you’re just left praying. We talk to each other and others and do the best we can, with hope in God that if we’re on the wrong path he’s going to correct it.

The other thing, or the last thing I think I would say is that we all have expectations for children, of when they grow up, whether they’re going to play sports or what have you, go to our alma mater for college. And those expectations can really be problematic. You have to battle those when you have a child with disabilities, and just love and accept them for what they are and the special gifts that they have. And there is a process where you sort of mourn some expectations, and some of them are just, you know, not applicable, and you have to sort of learn to let them go.

Presv. Melanie: I think the expectation thing was probably hard for me, especially in the early years, because you’re just always hoping for those milestones, and then you get kind of disappointed if they don’t come in the timeline that they’re supposed to. That’s so long ago; now there’s an acceptance, and there’s… But it’s taken a while for us to just accept that Michael may never do certain things. Unless there’s a miracle, he’s not going to speak. So there’s an acceptance, and it’s okay, but those early years were hard. I think that was challenging.

I think it’s put a challenge on our marriage, because we haven’t been able to do things together like typical couples would be able to do. Because of some of Michael’s needs being intensive—he has medical issues as well: he has autism, he has sensory issues—so going to places together, it became very quickly apparent that that was not a good option! [Laughter] Family time with any kind of over-stimulation was melt-down after melt-down. When we learned he had autism, it was like: Okay, now we know why, but we still had to cater to that. And so there was a lot of isolation and staying home.

So a lot of things we do, we do separately. For instance, we can’t go to a wedding together. You would go yourself if it was someone in our parish. Once in a while, I would be able to get help from my parents to come in and watch Michael, or a sitter, but because of Michael’s extensive needs, it’s not just like hiring any babysitter: there’s these health issues. So, yeah, those things were challenging and have been, but, once again, we’ve kind of learned to accept them over time, and we just sort of divide and conquer. When Michael’s in school, for instance, we would have lunch together or go to coffee together: try to do things to have some couple time when we could.

How do you think the challenges that you mentioned have helped us grow closer in oneness in Christ?

Fr. Joseph: Well, all the things we’ve been talking about involve self-sacrifice. In our faith we call that kenosis; that’s the self-emptying kind of love that Christ has showed the world and each of us. And so, as we sacrifice ourselves and our expectations and dreams and all that other stuff, and our time, we are able to put on the kind of love that Christ gives us. We grow in his likeness.

I think also, too, it’s a team effort, and if the goal is to grow in Christ, then you see more things in your marriage in that light as opportunities to do that.

Presv. Melanie: Oh, yeah, definitely. It helps you sacrifice your own will for the good of the whole. The other thing I think it’s helped me do is to go deeper. We might not have typical experiences, but I think our relationship has grown deeper. I think because of the hard stuff, we’ve had to go to counseling sometimes to get help and guidance. Bishop John was one person that helped us, and to seek counsel from confession. So we had to go deeper. And I don’t know if we had a typically-developing family with all the activity that comes with that. If we had really addressed those issues, I don’t know if they would have come up.

Fr. Joseph: Yeah, I think any family, when you’re raising children, a lot of the things we struggle with as parents come boiling to the surface, and you have to talk to somebody about them and they have to be addressed. So definitely in our case, that’s what happened. You have to find people in your life, too, that you can talk to, whether it be a counselor, your priest, or someone—another parent of children with disabilities who understand. A lot of times when you try to talk to your friends who have children, there’s certainly shared experiences, things that are common to families in parenthood that we can all relate to; sometimes, though, particular things that I need to talk about and get off my chest were not quite understood by others. So we do need to find somebody, who, you know…

Presv. Melanie: Gets it.

Fr. Joseph: Yeah, who gets it.

Presv. Melanie: In what ways have you had to modify your expectations as a father, as a spouse, even as a priest, because of our family’s unique needs?

Fr. Joseph: This is something that I say all the time, and I keep telling myself, and Melanie at times, the important thing is to get to heaven. And so we’re on a journey towards the kingdom, and we have to keep that in mind. All parents do, of course, but when you’re dealing with battling expectations, it’s enough for us to be a family in Christ, growing in Christ, and on our way to the kingdom. That’s plenty, and so we can’t put more on ourselves and stress ourselves out.

I’ve learned, too, I can’t put the kind of time into the priesthood, my profession, I guess, that I would like. I’ve had to scale things down a bit, not only in terms of the amount of work or ministries that I take up, but also even the size of the parish. We’ve had to downsize. We started out in one of the largest parishes in our metropolis, and that just was not working. I was never home, and, Melanie, you were at home by yourself…

Presv. Melanie: All the time.

Fr. Joseph: ...all the time, and it just was not working. And so I’ve had to downsize to go to a parish that I could care for pastorally and still have enough time to help here.

Presv. Melanie: And we’ve been blessed to have opportunities to go to small parishes since that first assignment, so that our family life can have some attention. And a lot of families have a spouse that’s out of the home a lot, but with these particular needs, to have a smaller parish has helped us to at least have that family time, because we can’t do a lot of things outside of the home because of Michael’s sensory issues and because of all of his extra medical issues.

Fr. Joseph: I think one more thing that I’ve had to modify is that I really just need to find meaningful experiences for us as a family, and for myself, and for myself and my son: just when I have daddy time with Michael. If you can’t throw the football, what can you do that’s meaningful for both of us? And I learned when we were serving one particular parish, St. Spyridon in Monessen, Pennsylvania, that had wonderful grounds. We lived in a rectory, and there was a large campus, if you will, and Michael and I would take walks. And one thing he liked to do was pick dandelions. He would sit there and play with the dandelions, and I would go hunting around the fields to get dandelions for him, and we would spend the afternoon that way, and it was wonderful. And so that’s something we could do together that we both enjoyed, and so I just learned to take my cues from Michael—learning, I’ll say.

Presv. Melanie: I’ve definitely had to modify expectations as a mom in the relationship area. I wanted to bond with my child in a certain way, and he had an early stay in the NICU, and that was extremely painful. The first early months of his life, wanting to be with your baby, wanting to nurture your baby, wanting to feed your baby. I mean, there’s so many things we had to let go of in that area.

As a spouse, definitely, and as a priest’s wife, I had this vision of what our life would be like, serving a church, and that our family would do everything together with the church. So we would be at every service, we would do every family activity with the church—and that has just been blown out of the water.

Fr. Joseph: And we would go on missions together.

Presv. Melanie: Yeah, on mission trips. Those were things that I wanted as a family to have those experiences together. And, you know, Michael just— It’s not— He can’t do those things because of his needs; they’re intensive. And so, yeah, that’s been hard, because I want to be at every church service. I want to pray there. I want to enjoy outings with the JOY, the HOPE, the GOYA, all of those things, as a family, and that doesn’t always happen. We have to pick the short outings that we can handle according to Michael’s needs and according to our patience and our ability to handle it all. And even church services like Holy Week, I can’t come all the time at night, because Michael has a hard time. So there’s been some sacrifice, but there was a time that that was very difficult and very painful, and then now there’s this acceptance, that that’s just how things are, and it’s okay. And God is with us even if I can’t be everywhere present. [Laughter] It’s still a beautiful life; it really is, and I’m grateful for it.

Who and what has helped you get through some of the most difficult losses of your dreams or expectation?

Fr. Joseph: For me, it’s just faith counseling and communication. The active spiritual life in the Church, not only personal prayer and reading, but going to confession, going to services, getting that shot of grace that we need through the sacraments. Counseling, not only spiritual counseling from a father confessor, but also clinical, professional counseling. I’ve gone in at various times, rough patches, you could say. I’ve always taken advantage of that kind of counseling. It’s helped to get me through. And I was a really terrible communicator early on in our marriage, and I’m becoming better. It’s just a skill, I guess, I’m still working on, but I should just be able to tell Melanie or whomever what’s going on inside, the internal struggles; that’s helping.

Presv. Melanie: Yeah, I think sometimes early on we were even afraid to share what some of our pain was, because of not wanting to put more stress on one another. So definitely confession has been a life-saver for me, too, and counseling, through some of the difficult challenges. And just being able to share things with you helps. It was so much harder when we weren’t able to share with one another. That was just extra pain on top of the already painful loss—loss of a dream, perhaps, and then not being able to share or communicate that with your spouse is really hard. So I’m grateful now that we can be honest about these things and say, “Okay, this hurts me. I wish we had this, but, in Christ, I know our family’s exactly where he wants us to be and just how he wants us to grow.”

Fr. Joseph: Yeah, that’s kind of the self-imposed guilt that I had to struggle with. I always felt like I was letting Melanie down when I would be honest about failed expectations and dreams and so forth, but, you know, honesty has been one of the best vehicles for growth for us.

Presv. Melanie: Maybe in some ways you felt that because it did hurt me? I was kind of protective of Michael. I mistook my own feelings of loss and your feelings of loss as not caring, or not loving him enough. That doesn’t mean you don’t love your child with all your heart; it just means that there are certain things that you had envisioned that you’re grieving, because they didn’t come to be, but then another gift takes its place. So I think being able to be comfortable with that, that of course we love our child, but if we don’t face those griefs, then they just get worse, or they come out in different ways. They need to be— They’re like wounds that need to be tended.

Fr. Joseph: And they will manifest themselves. [Laughter]

Presv. Melanie: Yes, yes!

Fr. Joseph: You’re not going to hide from them. They’ll come up.

Presv. Melanie: Yeah, they’ll come out. What advice would you give young husbands, young fathers, who are facing similar challenges in their family life?

Fr. Joseph: All right, I have a couple things. I’ll say four. The first one is: You cannot be the kind of father that you either want to be or need to be without Jesus Christ and an active spiritual life within the Church. You just can’t do it. We necessarily need him to be the people—the man, the father—that he created us to be. So that’s the first one.

The second one: we keep talking about expectations and how dangerous they are, and so you have to be careful of them. And there’s a certain balance: we need to push our children to grow and explore and broaden their horizons; at the same time, though, we have to let them be themselves and not get frustrated and angry with them. And the frustration and the anger is something we need to be careful on, perhaps as men especially. And so we need to pray to God to help us find the correct balance, and we need to just be gentle always. Gentle. Most of the regrets that I have is, because out of frustration, I would yell at Michael or yell at Melanie or… I was not a gentle person.

And I can’t be that man without Christ’s help, so we have to remember to pray in the moment. Do our cross, ask God for his help. It serves two purposes. It gives us a certain amount of buffer space that we need to calm down a little bit, and calling on the name of Jesus provides the help we need, and it’s also—his name is terrifying to the enemies that could be tempting us. Be gentle always, and pray.

And the last one is: talk. Talk to someone. You need to be able to find someone in your life, not only your spouse, but even outside your marriage, that you can be honest about your grieving over losses, and you need to be able to blow off steam, and you need to be able to talk about your worries and fears. I don’t want to play to stereotypes or generalize here. I’ve found myself I struggle with those. I don’t know if all men do it, but I certainly did. So those are my four things.

Presv. Melanie: Okay. I think balance is really hard and tricky, and every family’s different, but it’s key. So it’s balance of parenting style, balance of how much time is devoted to certain activities, certain schooling, certain therapies, versus just being together, just resting in each other’s presence. Also, something that I’m just learning: I grew up with a very loving family, loving parents, but they love their children first. They just put their children first.

However, I’ve been taught that in the hierarchy of the experience in the Church, we’re baptized first, so connected to Christ; then we have the sacrament of marriage, so then it’s our spouse. So God is first in our life, then our spouse, and then, following that come the children. So this—I still don’t know how to balance that. I don’t know if I even still believe it, because I’m just learning it! [Laughter] I want to throw that out there, though, for young mothers and young wives. Just because you have children, you love them with this love that you could never have imagined possible, it doesn’t mean the husband doesn’t need you, too. And same for the husband with the wife. As much as you love your child, that wife needs your love and attention. So just even though most of your time, if you’re a caregiver, has to be caring for the child—so I’m not saying you take away that time; what I’m saying is don’t forget about your spouse and how much they love you and they need you, too. They need your love.

Let’s talk about ways couples can nurture their marriages, about specifics. How could they nurture marriages even though they have maybe extra responsibility?

Fr. Joseph: Yeah, I think we have expectations there that just need to be jettisoned out the window. We need to talk with each other and find meaningful ways to enrich our marriage, like Melanie said, cuddle time in front of the TV, or taking walks together, going out to lunch together, whatever it is that you two draw strength from, whatever it is that is life-giving for you and your situation, that’s what you need to go for.

And also, like she said, we need to find meaningful ways to say, “I love you.” Obviously hearing it helps. Sometimes, though, when I know she’s really got a lot on her plate, I really push myself, because I hate doing dishes, and I’m not the best bath-giver, but I have to pitch in with those, too. That’s part of the way I show her how I love her. And if she needs anything, man, I’m out the door, to go to the store, to run errands, and all that kind of stuff. And, you know, we also need to find ways, personally, each of us and together, to blow off a little steam, have fun: take a walk, exercise. We’ve got a jigsaw puzzle sitting here in the middle of our table. Those little things that you can do. Mini-retreats, mini-vacations, maybe 15-20 minutes; that does a lot.

Presv. Melanie: Little notes you can leave one another. Texts with hearts, or make a favorite for dinner, or something like that, just to show you’re thinking of them, too, that you care about them, even if most of your attention needs to be in the sphere of raising your children.

Fr. Joseph: Sometimes I just want to hear Melanie’s voice. When I’m at the office or running around, I’ll call. I don’t want much; I just want the connection of her voice. For me, that goes a long way.

Presv. Melanie: Aw, that’s so sweet! I thought you were doing that for me! [Laughter] I thought maybe you were like: “Oh, I’ve been out all day, so I’ll just make sure she’s not too lonely, and I’ll check in on her.’

Fr. Joseph: Well, that too!

Presv. Melanie: Thank you. You’re sweet. What makes you happy about our family life?

Fr. Joseph: Well, it really… Discovery and loving simple things. Going on walks: we have this big, industrial wagon that we pull Michael in, because now he’s a teenager, and we take him for walks. There’s a little park close to us, a couple blocks away. I love taking those walks. At the church, we have— I love spending time together at church.

Presv. Melanie: He loves being in Liturgy.

Fr. Joseph: Yeah.

Presv. Melanie: Yeah, and those weekday Liturgies when it’s just as a family are really special, because he can move around a little bit more, and it’s just very sweet. Sometimes we’ll sing. Once in a while if I have to help chant, I’ll practice hymns with you, and if we’re practicing hymns at the table, he gets so excited, and he comes and he brings his iPad and records us and keeps requesting that we sing the hymns over and over again, because he loves church hymns, so it’s really beautiful.

Fr. Joseph: And sometimes, to get him to laugh, you’ve got to be pretty silly, especially when he’s not feeling the greatest. And, man, have we just explored all new realms of silliness together.

Presv. Melanie: Oh my gosh, we are totally silly.

Fr. Joseph: Which is not— [Laughter] You wouldn’t know us if you saw us, I’ll tell you that.

Presv. Melanie: Yeah, I think silliness is our jam as a family. I like just, at night, when we wind down and we lay on our couch together, all three of us, and do our thing. He’s on his iPad and we’re watching a show, and it’s sweet.

Fr. Joseph: Yeah, we have a love of British television, so we will binge-watch all kinds of British TV shows, and we’ve gone through quite a bit.

Presv. Melanie: So we try to find things that are life-giving to watch together, and we do enjoy that time together. Well, in one word, how would you describe our family? What’s our strength?

Fr. Joseph: Oh! Ah. Meaning! We’ve spent so much time questioning why, the why of things. It’s almost as if God’s been answering it the whole time. We’ve been discovering how blessed we are, how beautiful our life is, how beautiful life is in general. Michael has brought so much to us and has pulled so much out of us, and what a miracle God has done in our lives through this! I don’t know how to sum all that up. “Blessed,” I guess, would be the word, if I have to pick one word?

Presv. Melanie: That’s beautiful. Thank you. I do feel blessed, too.

So I hope you enjoyed hearing a little bit about our family life, and hopefully we served to encourage you or give you some ideas for your own. God bless.

Fr. Joseph: God bless!