074 – Pastor Cory Estby Adopted Two Brothers Who Both Have Duchenne Muscular Dystrophy

Transcript:

Dad to Dad 74 – Pastor Cory Estby Adopted Two Brothers Who Both Have Duchenne Muscular Dystrophy

Cory Estby: Adoption is a wonderful Avenue of love and fulfillment fulfillment for a father of summit for a mother for summit, for the child who is granted safety and love. It is a leap of faith. You don’t know. What the future will hold, but to trust.

Tom Couch: That’s special father Cory Etsby, the pastor at Zion Lutheran church in Grant Park, Illinois, Corey, and his wife, Christina have four children, including two adopted brothers who both have Duchenne muscular dystrophy.

We’ll hear the fascinating story about how these two young boys became a part of the Etsby family. On this dad to dad podcast. Here’s our hosts, David Hirsch.

David Hirsch: Hi, and thanks for listening to the dad to dad podcast, fathers, mentoring, fathers of children with special needs presented by the Special Fathers Network.

Tom Couch: The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs through our personalized matching process, new fathers with special needs children connect with mentor fathers in a similar situation. It’s a great way for dads to support dads to find out more, go to 21stcenturydads.org

David Hirsch: And if you’re a dad looking for help or would like to offer help, we’d be honored to have you join our closed Facebook group. Please go to facebook.com groups and search dad to dad.

Tom Couch: And now let’s listen in on this conversation between Corey Etsby and David Hirsch.

David Hirsch: I’m thrilled to be talking today with my friend Corey Etsby of Grant Park, Illinois, who is a father of four and pastor at Zion Lutheran church.

Corey, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Cory Estby: It’s my pleasure. Glad to be here.

David Hirsch: You and your wife, Christina had been married for 20 years and other proud parents of four children, Gabriel 16, Kaley 14, Samuel five, and just saw for both the Samuel and just saw.

Are adopted and have Duchenne muscular dystrophy. Let’s start with some background. Where did you grow up? Tell me something about your family.

Cory Estby: So a Midwest boy, I suppose you might say a Southwest Minnesota birth Pipestone, and, uh, only there for six months. Uh, as we move then to the middle of Missouri, a three month stint out in California.

Before moving to Colby, Wisconsin for four years through my kindergarten age and onto Aberdeen, South Dakota, which in my mind is probably the most formative reference of growing up eight years in South Dakota through elementary and the junior high before moving to central Indiana. Muncie area, stay there for high school, remain there for college and on we go.

David Hirsch: So you moved around a lot. It’s very obvious. I’m sorta curious. No. What did your dad do that? Might’ve prompted all that moving around.

Cory Estby: Sure. So my father is a, a 1974 graduate of Concordia university in Seward, Nebraska in a church work program. He was a director of Christian education. It’s a within our church body for the last 60 years and not ordained.

So a lay commissioned position to work with churches. On youth programs on education, kind of a support for the pastor within the congregation. And so he was working with churches, working with schools, connected to the churches we moved to as the work and call permitted. Okay.

David Hirsch: Who did he actually work for?

Cory Estby: So he worked for the church Eve’s church there. So our Synod Lutheran church, Missouri Senate has about 6,000 congregations. Each congregation is able to call their workers as they see fit. So one time it was Emmanuel Lutheran in Kansas injection city as well. Um, so each church called him to serve in that position.

David Hirsch: And is he still alive?

Cory Estby: He is. How old is he? So he just turned 70. He retired two years ago after 45 years in the ministry, we might say, although a half of that was as a DCE, the other half, he actually returned to school. Uh, when he was in his forties to become a pastor to become ordained after going through seminary.

And he was working in campus ministry at the time. So working with college students, it was kind of a transient congregation of sorts. You’ve had them for three or four years and off they go

David Hirsch: every once in a while you get a dividend, somebody will come back and say, if it wasn’t for you.

Cory Estby: Exactly. And so, uh, I just remember his work.

Those students kind of became part of our family at times. He was. Dedicated to them and his ministry.

David Hirsch: Did you have any siblings growing up?

Cory Estby: I did. So I have two older brothers, Daniel who just turned 48, another brother. Paul is 45. So two older brothers that, that certainly, I just remember wrestling matches and it was always two on one, but it was never the same too.

So.

David Hirsch: So you’re pretty close to your brother. So we are

Cory Estby: that’s excellent distance wise. Uh, that that’s changed in, in, in our family perspective. My oldest brother is now in North Carolina. That stand out with wife and two girls, middle brother. Paul is in the twin cities area. And no, because Minnesota is, he works for the Guthrie theater, with a wife and two girls.

And then here we are in the Chicago land area, wife, four children. And then we talk with my father and mother. They’re in junction city, Kansas hours away in which, uh, the opportunity to see them, you know, once or twice a year, invitation for them to come visit us as well. So we do what we can.

David Hirsch: That’s awesome.

Well, thanks for sharing. So I’m wondering how you’d describe your relationship with your dad.

Cory Estby: It’s it’s a respected relationship. You know, I saw my father. Giving of himself and not only for a wife and three boys as we were growing up, but also dedicated himself to the church that he was serving a godly man of the word, a giver of his time, a listener and not, not a problem solver, but a Walker along in the faith and see expressed that godliness to us.

I learned from him what it meant to love, what it meant to sacrifice, what it meant to give and even perceived as head of household within the family, allowing the other members to be represented. And he cared. He allowed us to grow with that.

David Hirsch: It doesn’t sound like it was a do. As I say, not as I do type of environment,

Cory Estby: it was definitely a modeled environment that he did.

He lived it, he was helpful around the house. He was a great maintenance technician that unfortunately it didn’t come off under these handguns, but he was just, he loved to run, to do things around the house. He was a tinkerer, mechanics, electrical cars, uh, lawn care, landscaping, all of that. He just loved to just.

Do it and I got to see it. So

David Hirsch: it was more of a role modeling.

Cory Estby: Okay.

David Hirsch: So are there any important lessons or takeaways that come to mind if you said one or two things that might sort of capture the essence of your relationship with your dad

Cory Estby: from a foundational perspective, it’s love God and love those whom God has placed in your life.

Go love. God, love your neighbor, but every day brings up it’s new challenges every day brings up it’s opportunities. And so if you’re a faithful in that day, Gotta be pleased with that.

David Hirsch: Excellent. So let’s switch gears and talk about your grandpa’s on your dad’s side to begin with. And then on your mom’s side, I’m sure

Cory Estby: grandparents on the paternal side, which isn’t Oscar and Marcella, uh, they.

They raised their family initially in Rochester, Minnesota kind of Midwest area. But, um, when my father was young, they moved out to long beach, California, the LA area. And so I get to hear stories of, uh, watching Disney come into play know going into on the first day and things like that. Grandpa died in 1989.

I was the same year that my oldest brother graduated from high school. No, I’ll go back to my father a little bit here because he had a very difficult decision to make. Does he stay for his oldest son’s graduation? Does he go back upon who you’re now of his father’s death to see him process that in that time I wasn’t aware I was 13 years old and probably didn’t care.

Didn’t know the ramifications of it, but that decision for him and my mother to decide where does he go? He stayed, he stayed for the graduation. He. Recognize this family that was here, uh, that he was a part of and made it to be here for support. He could handle the other family. Which he did. Wow.

David Hirsch: That is a pretty heavy decision to make, you know, it’s not a right or wrong decision, right.

Because it’s more of a, it’s not even an ethical decision, but it’s a conundrum. Right? Know, there’s these two celebrations, right. One is for a child of yours and one has to pay respect to your. Your father,

Cory Estby: correct? Correct. And I do remember my they’re referencing early on that it’s him growing up in California and then coming back to Midwest for university days, he knew he’d be raising his family in the Midwest.

Just the way it was California. I dunno if it was just too busy to hubbub. I don’t know. I didn’t get into that, but yeah. Uh, yeah, for, for his commitment to the family where he was, that hadn’t been established. Okay,

David Hirsch: well, that was Oscar. And then on your mom’s side.

Cory Estby: Yeah. So Ralph and Francis, uh, Hess, grandpa Hess, we called him, he was just a hands-on worker farmer later in life became kind of working at a welding shop with his hands and just remember his.

The hands that just showed their effort of the day. Like our hands. No, they were certainly were not lotiony smooth or anything like that. I mean, yeah. These were just large worker hands that showed the date’s efforts. He showed his love. And I guess I meant to say unique ways. It wasn’t overly affectionate that I recall and yet provided.

I think that’s the best way to simply put it.

David Hirsch: Okay. So did you get to know him very well?

Cory Estby: That was the place we usually went to too on holidays and vacations. We were usually close enough to that side of the family that I just remember those occasions, Pipestone, Minnesota. So I never six children in the family.

So five other uncles and aunts and lots of cousins around that were our age and such. So that was a family connection.

David Hirsch: Okay, so a little bit closer to your mom’s side of the family as a result of proximity versus your dad’s side out in California, correct. That’s awesome. Thank you for sharing. Uh, you did mention that too.

Uh, went to high school in Muncie, went to ball, state university, which is a monsoon.

Cory Estby: Correct.

David Hirsch: What, uh, were you thinking when you graduated, what was your degree in

Cory Estby: Yorktown? High school was a County school around Muncie where I attended for high school. I wished to enter. Music performance as a vocalist within the first year recognized vocally, there were as a lot of other wonderful talents there.

So I moved into education. So my undergraduate was in music education kindergarten through 12th grade music. And I did that for two years.

David Hirsch: And then a one. Did somebody already come into play?

Cory Estby: Yeah, it was after those two years, but on the seminary, I went not planned initially. I loved music. I loved teaching after my first year of teaching the administrator, the principal called me and was office and said, SP what do you think about administration said like principal, you mean.

Yeah, we need, we need guys like you. I said, well, I don’t know. I tried the classroom, not sure what it all entails. And so I did start to explore for master’s work. And in the midst of that exploration things just started coming together. As information on Concordia, theological seminary came to the house, exploring their work, and it all just pieced together remnants of church members where we were attending Warsaw, Indiana of.

Members who would say in the midst of choir rehearsal, make a great pastor someday, lo and behold, after a year and a half of teaching, I mentioned it to my wife and said, I’m thinking about the seminary to become a pastor, not knowing what the response would be from my wife, Christina, we’ve been here for a year and a half at that point.

Great. When are we moving? When are we going? John just dropped. I couldn’t believe it. She’s like, well, I knew it was coming. I was waiting for it. I tell my inlaws in Indianapolis, our plan, they both said wonderful. We assumed that was going to happen. I tell my parents in Kansas thinking of going to a, to Fort Wayne, where my father had attended years before.

Yeah. We kind of knew that it was going to be and all around me, they had the story, they knew the picture. And ultimately in time, I finally realized this. It sounds like you were the last one. I

David Hirsch: know

Cory Estby: that’s sometimes how it happens, how many times the case.

David Hirsch: That’s a wonderful story. Thank you for sharing.

So I’m sort of curious to know, how did you and Christina meet.

Cory Estby: Yeah. So ball, state university, third day of college. I was a welcome third, third day of college. Yeah. So we had already started classes, but, uh, uh, first week of, of campus, we had a welcome picnic and my father was serving as a DCE at the time in campus ministry.

He organized the welcome picnic for students. Christina grew up in Indianapolis for all of her 18 years and came to ball state, which was an hour North of Indianapolis and Muncie. I was a local home town guy living at home. Living in the church. My dad was a campus. Pastor met her at the picnic and I have to humbly say she had eyes for me.

I didn’t have eyes for her. Uh, I thought I was a good Frisbee thrower as well, ended up throwing a Frisbee and hitting a roommate in the head. So that’s another story. Um, but, uh, no. So she, you actually pursued me or at least talked amongst her girlfriends of, Hey, is that Corey? Took me about six months last to know last to figure out, I think this is the case.

Again, patterns here after six months, we did start dating. She’s a wonderful pianist, a great organist as well. I did have to secure her as my vocal accompanist for my private lessons first, before I asked her out, not quite knowing how that would turn out, but no, we dated all throughout college. She was in the speech pathology program at ball state.

Yeah, for her internships became a speech therapist. And for those two years after we married in 1999, she was working in Warsaw, Indiana, and five schools within the district Warsaw. I was traveling with those 30 miles down to Wabash and music teacher in both of our minds. We were going to conclude our studies before, although very early on, we were very confident with each other and that grew in love with each other.

David Hirsch: That’s great. Well, thank you for sharing. You’re the pastor. At Zion Lutheran church here in grant park, Illinois, which is not to be confused with grant park Chicago.

Cory Estby: That is correct. That is correct. So grant park, Illinois is a small community of about. 1200 baby can’t even add, you know, 40 miles straight South of Chicago and South of IAT.

So Southern Illinois as many, uh, often reference

David Hirsch: maybe towards central

Cory Estby: Illinois that way, but, uh, I’ve served Zion Lutheran church for the last 14 years as their pastor, a sole pastor. Coming out of seminary. It’s a four year master’s program. So you do two years of schooling. You have a one year internship.

What we call the fit courage in which they send you elsewhere to serve under a pastor, as a supervisor, as you’re learning to work within the church. And you’ll come back for a fourth year of residential studies at the seminary. So after those four years are completed, you’re examined and a congregation is going to call you as a student to be their pastor.

And so this ordination of brother pastors who, uh, are given the bulls and such, I was called to serve. I have Lutheran church in the summer of 2005, straight out of seminary. It’s an exciting time. Cause you don’t know where you’re going to go at the time. My wife, Christina and I had one child Gava was born our second year of seminary.

So he went up to Colorado with us. Boulder, Colorado was our victory assignment. And so my wife and Gabriel, fourth year, we were blessed with a daughter Kaylee. And so here we have a two and a half year old and a six month old sighted to note them. They didn’t care. We were excited to know where we were going to go.

And so we have a call service on one of the nights as our studies are concluding and they say your name, they say the church and where the location is, and that’s where you’re assigned. It sounds like a centerfold

David Hirsch: draft or something,

Cory Estby: but on a different scale. Yeah. Yeah. There’s a, a buzz. Yeah. And an excitement.

I recall. No. Wives would bring them. My wife did not, but wives would bring their maps with them so they could immediately kind of check out. But here’s I Lutheran church grant park. The only grant park I do know is downtown Chicago. And I knew in my paperwork, I had requested no urban downtown environment, but, uh, the old, uh, blessing here, serving the congregation

David Hirsch: just as a quick background, uh, Zion Lutheran has a greater presence than just sign them threatened in grant park.

How many different parishes or

Cory Estby: locations do you have? Lutheran church is a congregation in grand park, uh, on the outskirts of the community, 147 year history of serving the people in that area. But it’s one congregation of many that are walking together. We have a circuit of congregations that is in the community surrounding us, you know, eight to 10 congregations and pastors that are my brothers of serving in the ministry.

The whole district of Northern Illinois has about 200 plus congregations that walk together. And then on the larger scale within the Lutheran church, Missouri Synod, nearly 6,000 congregations that are walking together in confession, in faith. But, um, one of the parishes nearby st. Paul’s Lutheran church in Beecher, about five miles to the North, their pastor received, and he accepted a call to Nebraska for the summer this year.

And so they became vacant. They did not have a pastor that was serving them and they then inquired if I would, uh, come and assist them in that regard. And so for this interim, as they are seeking to call another shepherd for them, I am serving st. Paul’s and Beecher. I’d also designed grandpa, which stretches my time at moments.

And yet it’s a wonderful blessing to get to meet some others that you don’t always get to see.

David Hirsch: That’s fabulous. Well, thank you for sharing. So let’s switch gears and talk about special needs on a personal basis. And then we’ll all talk about special needs beyond before you adopted Samuel. I’m wondering if you or Christina had any connection to the special needs community.

Cory Estby: So a very limited connection to the special needs community. My wife is a speech pathologist. She certainly had some clients and children that were needing services on the gamut of. Of special needs in my music teaching for those two years, there was a, his special needs class that during my prep period from music, I sought to meet with them only.

Usually they were integrated into the classroom for music. And so they were participating with all of their other peers, but, uh, I wanted to have their opportunity, which they could do some other special things. And so we usually met in the gym and, uh, a lot of them. At autism on the spectrum, as you know, early two thousands, some of that language was being formulated and determining about it.

But, um, that was my exposure to it. Our two oldest Gable and Kaylee, biological children, and then Samuel child who was adopted our, our adoption. Process really started early on in our marriage, as we had conversations about wanting family. And this is not anymore. You’re older to a fourth, correct? Yeah.

Early on, we had the, the idea of adoption in our minds. Not certain how our Lord would bless us in the family. Married in the summer of 1999 about here and a half later, my wife, Christina, we suffered a stillbirth, lost a child. Caitlyn shell was the name that we had selected for this beautiful, beautiful child.

And then she was given that name with the Lord now. It was a time of loneliness. My first year of seminary was singing in a choir. I remember being out East coast, actually touring in some congregations, my wife was pregnant and she called and said, I’m going to the hospital. And my mother happened to be in town with her.

At the time. So she was 19 weeks alone, lost a child at 20 weeks in that, that range. And, um, so I was out East. I wasn’t there, it was, uh, as a new father at the time, devastated to hear word, wanting to be back with my wife, suddenly just support her. By God’s grace, uh, an individual who had attended the concert that night, that we were at a worship service in Pennsylvania, uh, offered airline miles to find me back that next morning and get me back as soon as possible.

So that could be there. Oh, we’ve been lost the child that day, January 3rd. It’s amazing how updates just kind of remembered. Certainly. But, uh, as we learn, as we grow, as we mourned, as we, uh, lived and loved, we were blessed. Gabriel. Kate was born in January of 2003, not an easy pregnancy. Certainly we call it.

So it’s high risk. I recall when he was born 48 hours later, he’s in the neonatal intensive care. Oh, well he was born with a group B strep virus. He wasn’t regularly in this temperature. Very well. But it was a lactation consultant who actually identified issues. It broken collarbones from, from birth, uh, not regularly, this temperature wasn’t feeding well.

And so the testing began, he spent two weeks in the hospital and so he came to learn and love the nurses and the care that’s provided for. Can say special needs, but in that realm, certainly it was a special time of care and what they were able to do in caring for him. Uh, as it turned out, uh, our oldest, uh, Gabriel, he has a hearing loss, two hearing AIDS, both ears audiology, and a kind of an undiagnosed symptomatic thing of progression.

That was our first exposure kind of with special needs. As at the age of four, you had hearing AIDS. And for the last 12 years, he’s had those hearing AIDS. Kaley came around in December of 2004. And again, a bit of a high risk pregnancy. There’s always concern and wonderment, but, uh, overall very. Normal pregnancy, normal birth joy.

I have a son and a daughter. And, um, check the box on one of these. Sometimes that’s the assumption. Oh, you got, you got one of each are done in our minds that no, we, I don’t think we were. And that led us then into foster care into the adoption. We were licensed through Catholic charities, Joliet state for foster care.

Uh, geographically, it was posed a little bit of a predicament as they try to keep children in their geographic regions. We’re in the country. Aren’t a whole lot of children that were in need within our rural environment, but we did have some placements that were kind of second and third homes in which they needed further care.

And so we did have the few foster placements in the course of time, probably over maybe two years. Then my wife had an opportunity to, to become a preschool teacher at a local different school. We decided to hit the pause button on the foster care live as our family contentment and in her room work. And I work as well.

And after two years we were, we were all feet into adoption, working with an agency, getting our profile together, getting our name out there, and that whole adoption process from. That point went almost three and a half years before Samuel emerged into a conversation in our lives. Rough road, tough times at times, financially, at times emotionally, we were matched with several birth mothers and on different circumstances.

One of our birth mothers, herself experienced a stillbirth and we were able to kind of. Walk along with her a little bit, and that’s a morning, obviously morning for us as well. And as we have been matched, but still for the course of that time failed birth matches. And, um, we were close to being done. We had said that April of 2014, as we’ve been on the path for four years of adoption, or as foster care before that, we kind of maybe felt a little jagged with our family.

No. We had watched her to Gabriel and Kaylee grow and where we leaving them out, had we not focused on them as we were seeking adoption and such, those were the questions and concerns that we had and finally said, okay, we’re going to be stopping after this contract ends with our profile and such. Was February of 2014, then that we received a call friend of a friend, Leah called us up and said, Hey, I’m down in the Peoria area.

I’ve got a friend, who’s a social worker and they’re talking about this baby boy, uh, seeking a home. Can I share your information? Or can I give you information said we’re always open you’re through any opportunity. Um, baby boy, Oscar, as he was called at the time had been born in December. Of 2013, birth mother was a carrier.

She knew she was a carrier for the Duchenne muscular dystrophy, a 50 50 chance that boys are contracting that and showing symptoms, Samuel, as we now call him, was matched with another family because of this special needs genetic testing that occurred and the diagnosis they chose to go in different rounds.

And so Samuel was. Seeking a home. We drove on down a couple hours, visited with him very quickly. The paperwork came together. Yeah. So

David Hirsch: you went in with both eyes open knowing what the diagnosis was.

Cory Estby: We did. So we, it was a 24 hour period of educating ourselves. That long. Well, it seemed that way, day and night.

I have a lot of prayer, but first how to say it, spell that Duchenne muscular dystrophy. I must say my awareness was simply Jerry’s kids, labor day telethons, you hear muscular dystrophy and they immediately that’s the attention drawn, which is a wonderful awareness. We learned a lot about Duchenne in that time and we’re continuing to learn a lot more as days go along.

But what did it entail? What would the progression be of the disease? How would it affect our day to day lives? Very easily could have walked away from it as well. But I think our time of those failed matches and such preparedness Protestant, a position to say, yeah, let’s dive in.

David Hirsch: Yeah. Well, it’s, um, that’s remarkable.

That’s a remarkable story. And maybe the difficulty that you experienced. Not so much with foster care, but the adoption process starting and failing, starting and failing, starting and failing, you know, did actually prepare you right. To make a, not a hasty decision, but be able to make that type of decision in a way that you might not have been prepared for had that same situation been presented to you four years earlier,

Cory Estby: correct?

Correct. And I think with adoption, how was the ideals. So is the ideals of boy or girl young or old, you know, what fits within the family from our perspective. And yet just boundaries. Just, they get stretched in love as we grow to recognize. Oh, it’s okay. It goes beyond our selfish desires of what we would perceive things to be, but rather, uh, an open home to provide.

A child with that, that permanent home.

David Hirsch: Yeah. Well, it’s not just opening your home, but literally opening up your hearts and creating a space, which is really powerful. So thank you for sharing. One of the things I remember you telling me in a previous conversation is that, uh, you were pretty tight lipped about sharing the diagnosis with family, friends, congregants for that matter, what was going on in your minds.

Cory Estby: Yeah, I appreciate you asking the question because I still reflect back on what’s kind of going through our minds. Um, I think we were scared. I think we didn’t have all the answers. If questions were asked, we didn’t want to be put in a position of saying, I don’t know, although now I’m much more comfortable to say, I don’t know.

We shared, we, we, we knew that the diagnosis. We allowed those around us and even the congregation to rejoice in the adoption journey a year before Samuel came home in February of 2014, the year before was one of our failed matches. And we were in Ohio for the time little girl had been born. We were at the hospital, held that child, the mother.

Decided to change her mind on the adoption plan and keep that child, we came home, certainly sorrowful the congregation sorrowed as well with us, but it was one year exactly to the date that Samuel then came into our home. We wanted to rejoice in that adoption. One of the congregation that I serve to be a part of that.

There is a child of God welcomed into the family as he was baptized shortly thereafter. But, um, knowing the diagnosis. Yeah, family and close friends, some of the leadership in the congregation was alerted to it. But with Duchenne, it’s kind of a hidden disease for several years. Um, families, uh, a diagnosis of boys with Duchenne.

It’s usually three year, four year, five years old, where this diagnosis then comes out as the progression of the disease begins to exhibit itself.

David Hirsch: So many parents wouldn’t even know that it’s there. Correct? Right. It’s just gonna present itself. Three years, four years or whatever,

Cory Estby: correct. Yeah. And you start to see some of the symptoms, some of the delays, and then some of the walking corrections and it takes medical teams time, even eliminate other possibilities before queuing in the Duchenne.

If there’s not a family history. In this case, the birth mother did have the family history. Then what went the genetic testing we knew. And so we were then watchful in regards to what this person, the question would be then in. January of 2017 is when we really brought it to the attention as a whole, to the congregation.

We wanted them to be alerted to it and an awareness in regards to it.

David Hirsch: Well, um, I’m wondering, because you knew of the diagnosis from the time that you adopted Samuel, if there was anything you were able to do from a early intervention that my. Have helped knowing what the situation was versus, you know, learning about it in a years down the road.

Cory Estby: Well, with Duchenne muscular dystrophy, there is no cure, but thanks be to God. There are a variety of pharmaceutical companies and researchers that are looking into it from a variety of aspects from the physical nature of the body. Samuel was enrolled in an early clinical trial up at Northwestern hospital here in Chicago for early steroid use.

Began use of prednisone early on in the, in the high dosage about to see what its impact would be on the ADI and on the persona and, uh, assisting in muscle growth at the time, even though in the background, it’s deteriorating the disease and then stepped into some physical therapy opportunities, stretching, and balance.

And then. You know, walking and stairs and things like that. Those two became the key components of kind of his early treatments. He has an appointment annually with neurologist. Of course we did some background cardiology work. We did some pulmonary background basis as well. The Duchenne is a whole body disease.

And so when we just think. Muscle deterioration. Yes. The most obvious one is the mobility concerns in terms of tags and things

David Hirsch: that you’ve got the heart too.

Cory Estby: Everything is muscle. And so your heart muscle, you know, in the teenage years becomes effected your ability to have the diaphragm muscle and expansion of lungs and breathing.

Ventilation becomes a concern. Obviously the mobility is it’s a concern. You needing, you know, with the jaw muscles and things like that, uh, components, the whole body impacted that becomes the progression of the disease.

David Hirsch: So where is he at age five now, as far as what he’s able to do or not do, uh, relative to a typical child would be five years old

Cory Estby: in comparison.

We see a little difference outside with running with, uh, his movements, adapting the hips and visibly, probably the only component is his calf muscles. They’re enlarged, remember comments of some people saying, Oh, he’s going to be a football player when he grows up because they’re seeing those large calf muscles.

Well, they’re not muscles, maybe not a bit of a fibrosis that’s happening there. Um, and so, you know, they are large. Um, but other aspects, most walking up to him, Aren’t going to want to see it at this point.

David Hirsch: Okay. Well, I’m just hoping that with the situation that you’ve described, that the progression is as slow as it could possibly be, and that he lives as typical a life and experiences possible.

And with. Love and commitment that you and Christina are making. And those around you, he’s in as good a place as he could possibly be.

Cory Estby: And we seek to do all that we can, you know, for him as, as our child, um, whether it’s medical care, uh, the physical therapy opportunities for research to find a cure we’re willing, but also knowing that yes, we’re prepared for the progression that will come and a boys with Duchenne.

Either teenage years are seeking independence and yet do have that dependent sense. They’re into their twenties, some Duchenne boys with, into their thirties, a few into their forties, but we do know that the life is shorter.

David Hirsch: Okay. That’s more from a heart muscle standpoint. It’s hard in breathing, right?

Okay. Well, very sobering. Thank you for sharing, but the story doesn’t stop there because, uh, Josiah comes into the picture. And, uh, how did that

Cory Estby: situation transplant? Yeah, so there, there is, there is another, uh, you know, Samuel and Josiah brought Samuel home in February of 2014. Went through the old concluding, you know, closing the adoption through cook County and such everything shuts down.

Our home study is closed. Our adoption attorneys, you know, covered and done. We’re a family. My wife in, um, summer of 2015, about a year after we had Samuel, mostly a closed adoption. We had been sending pictures and letters to the agency to put on file for the birth mother to come see her child that she wished she had.

Not all of our letters and pictures had remained in the file. So since birth mother had signed for Samuel had not been heard from or seen. But my wife, uh, determined Christina determined that, uh, she was going to write a letter to the agency on a day when I was busy at work. She composed that letter. And so I got home and she shared it with me, a very heartwarming letter to the agencies, simply thanking them for bringing Samuel into our lives, work that we did with them.

But also then an awareness of we’d be open. It’d be open to a conversation, uh, for the sibling, if birth mother, as we’ve heard stories of that guard before, or, uh, another it’d be hard yeah. To place a child or a child in need of, of that special care. It would be open to that conversation. We sent that letter.

It was a very short time. I don’t know if it was two weeks or a couple of days, but, uh, um, my wife would certainly be much better in telling that story of episode, but, uh, we’re in the case, I’m home for lunch and my phone rings. It’s the social worker. She was like, I received your letter. Thank you. We’re going to put it in the file.

But at that moment, she had the birth mother in her office, seven months pregnant with a child seeking an adoption plan. And, uh, uh, the social worker received our permission to share obviously our, our file and share that letter with her and our willingness. And, uh, we had then two months. To get everything to back open and back together in the adoption field, uh, to, uh, to welcome this sibling into the home.

Josiah was born in September, September 19th of 2015, 20 months after Samuel full biological sibling, father and mother. And we made it to the hospital about two hours after he was born. And from that point on, uh, took care of him, stayed for those 48 hours in the hospital, handle all the paperwork and red tape and caring for the child.

And on we went and concluding that adoption. So thankful, surprise and blessing upon our family.

David Hirsch: So did. Do you know about any genetic testing at that time or not?

Cory Estby: We did not. Obviously we knew birth mother was a carrier. We knew the prospect’s 50, 50, and didn’t know if it was a boy or girl at that point either.

Didn’t faze us at that moment. Within three minute glance to my wife, we said, yes, we would move forward with the adoption process of birth. Mother was willing to work with us. We then learned to be a boy. We took it upon ourselves. Then at about six months to have genetic testing done wasn’t necessary.

But I think for our own education, we felt it was the best thing to do so that we could also have been medically care. Within our family and prepare for what would be needed. And so we, it was not part of the adoption. It was on our own to have that knowledge. And he also then once tested positive for Duchenne muscular dystrophy.

So both boys have the disease and love within our home. So

David Hirsch: there are five and four.

Cory Estby: Yes.

David Hirsch: So you’d have some anticipation of what the road ahead might look like.

Cory Estby: We do. And yet each child uniquely, it impacts them and uniquely. And so at a different, you know, different timeframe based on how their body is adapting and taking it.

Josiah also is on a, not part of the clinical research trial, but because had done so well with it, that is part of the medical care for Josiah on a high dose weekend prednisone, a steroid. Physical therapy is common. Samuel has a two, one hour sessions each week. Josiah has one, one hour session that may be expanding wonderful pediatric physical therapist that works with the boys, uh, even inquiring into possible Aqua therapy, which of course would lighten the load on the, on the body.

So a future opportunity not to

David Hirsch: focus on the negative, but, um, From your perspective Christina’s perspective, what some of the bigger challenges that you’ve,

Cory Estby: I think an aspect to the whole adoption perspective, that the biggest challenge and probably major deterrent for, for many couples that might be considering adoption is simply a financial challenge.

Uh, it is a lengthy timeframe of preparation and paperwork. You reveal yourself. I won’t use the word exposure, but certainly you have to be very open and people are coming into your home for home studies and, and safety. And you’re checking the water for Wells and, you know, everything has to be safe in the environment.

It takes time and it takes resources. We’ve been blessed with a community that supported us in the midst of it. From, from a disease perspective with the Duchenne. If the challenge is simply recognizing each individual for Sam and Josiah, not seeing them lumping them together, but there different personalities, they’re different behaviors.

There tends to be some OCD that comes out and Samuel’s realm of day to day. Very regimented and scheduled. She wants to know what’s next happening. And it’s altered. Sometimes Jeff got a bit of a tantrum on your hands for Josiah, a unique personality as well, distinction, and he loves to be active. I think in our mind, Heinz, the difficulties are knowing the progression of Duchenne that to grief that may come when those movements and activities are slowing down or no longer.

Not sure we realize the full impact of that, but it’s a very close community within Duchenne to support one another. We’ve met families of boys that are in their teenage years and, and throughout that’s our guide, that’s our knowledge. And we can interact with them, hear their experiences and stories learn from them also.

David Hirsch: Yeah. Well, I think that sounds like it would be one of the more challenging aspects because. You can look at the adoption process now with the benefit of hindsight, put it in perspective and you’re differentiating between what the boys’ personalities are and what their needs are, and not just treating them the same, just because they have a similar diagnosis, but the uncertainty of what buys ahead, it seems like it could create some anguish and no, just the anticipation of it.

Um, but instead of pre worrying, your worries and projecting out to age 10 or 15 or 20 or beyond what comes to mind is that you have to be inherit, not, you know, life is a gift and, you know, you don’t want to take anything for granted and that maybe it helps you focus on being present a little bit more than you might be otherwise.

Cory Estby: Correct? Correct. And it is recognizing, you know, that. The joys and challenges of the day living here, living now today’s enough to worry about we’ll wait for tomorrow.

David Hirsch: Yeah, well said. So what impact has Samuel and Josiah’s situation had on their older siblings or the rest of your family? For that matter?

Cory Estby: We have the joy of older siblings that have exhibited so much love and welcome. They were delighted to have the boys haven’t witnessed or seen a rivalry or a, an issue in regards to it. But we did provide of reasons choose to homeschool. And logistically we knew family was important.

David Hirsch: So just to be clear, you’re homeschooling, the older ones

Cory Estby: were homeschooling.

All of them

David Hirsch: got up. Yeah.

Cory Estby: So our two oldest, I did go to a Lutheran parochial school for several years from preschool through elementary, middle of elementary, as the adoptions were happening. With salmon Josiah, we made the transition then to homeschool everyone. Uh, Gabriel is now a junior in high school with us.

Kaylee is a freshman in high school, not with curriculum and working through that. Samuel is a kindergartener kindergarten curriculum. And so my wife, uh, you know, handling a lot of those duties. My fatherly support to Josiah is along for the ride at this point, uh, with crafts coloring and games and play, but he assumed to come with the hard hitting, but, um, it permitted us as a family to be together.

My schedule as a pastor, my wife’s schedule is as a homemaker and care for the children and schooling. We get to see each other at meals. We get to see each other throughout the day.

David Hirsch: Sounds like a lot to homeschool. Right. And, uh, you know, I guess once you get into the curriculums, because it’s not like they’re all the same age that they’re like in a classroom, the curriculum for a junior and high school is a little bit different than a freshmen.

And then way different from what it would be for kindergarten, right?

Cory Estby: Yeah. And, and, and again, it’s who better than parents to know the needs of the child to, to allow them to grow within their strengths. Um, for our oldest son, Gabriel, it’s permitted him to have a part time job in the midst of the day.

It’s permitted him to express an interest within the, uh, uh, cadet program and our local fire department. And so he’s going through training in that aspect. Plus all of his academics that he’s excelling at that was language and science and math, and it’s all there. The components online is a great access as well.

David Hirsch: Okay. That’s got to help bridge the gap just to be able to get online. Well, thank you for sharing. That sounds very ambitious. Um, I don’t know that most parents, women for that matter moms are cut out to be homeschoolers, just. You have to be from my perspective, rather ambitious to tackle that

Cory Estby: it is a commitment and I must commend my wife in regards to her scheduling her organizational skills along with, uh, you know, with my support to, to do what I, there, there are times in which as a father.

I think I need to be more involved and more engaged within that aspect of it. That’s a tough balance times have recognized that fail wish to do more.

David Hirsch: Well, thank you for being so candid. I’m wondering supporting organizations, your family’s relied on. Are there like homeschooling networks, the, you mentioned the Dushane community, but are there others?

Cory Estby: Yeah, so we, the homeschooling community continues to expand, realizing how many are choosing to homeschool that at this time. And so, yes, within our, our own church body we’re Lutheran church, there are homeschooled support groups within the community. We’re interacting with the others who are homeschooling.

But handling the curriculum on our own and other homeschooling co-ops, but we haven’t connected with those per se. Uh, within the Duchenne community parent project, muscular dystrophy, it’s been a great resource of community PPMD jet foundation, shear Duchenne. These are organizations that, that host conferences day conferences for education, for networking, for communicating with other families experiencing Duchenne.

Um, but within the adoption community, we, we have been blessed through gift of adoption gift adoption, a national charity. I’m going to mention one of the challenges previously, a financial, my wife hopped online in the midst of our adoption journey and just searching for grants opportunities to, to assist gift of adoption came up, uh, and, and gift of adoption is an organization of.

Regional entities under the heading of gift of adoption, that issues, grants and their desire is that it be some of those final resources to bring the child home. They specialize, not exclusively, but certainly have a great emphasis or priority maybe last chance scenarios, whether that be special needs children, whether it be older children who might be aging out of an orphanage.

Whether it be keeping sibling groups together. And this is probably where we kind of fall in line because it was a special needs adoption with Samuel and his Duchenne diagnosis. It was special needs, but then also keeping siblings together with Josiah. And so two times we were blessed with a, with a very generous grant through gift.

David Hirsch: So how does that work? How does gift of adoption fund themselves or execute what they do?

Cory Estby: So get to the adoption has, um, Very generous donors that provide within their system for these grants, they will do some wine at restaurants. They’ll do some fundraising activities. Uh, I know the junior group I was in Chicago does a big stair climbing in one of the high rises efforts and events to raise funds, usually in the summertime.

A large fundraiser gathered for the gift, uh, is, uh, is put on

David Hirsch: that’s the name of an event

Cory Estby: gather for the guest to correct the name of the event that they host a couple of hundred in attendance and that thousands of dollars raised for these grants on November is adoption awareness month. I know gift of adoption is, uh, is out there feet on the ground as well, bringing awareness to adoption the joy that it is and the opportunities that are there.

Maybe to lessen the burden at times at that financial need within adoption.

David Hirsch: That’s fabulous. Well, from what I remember doing a little homework on Jeff adoption, the local chapter, the Illinois chapter has raised an excess of $1.5 million and they get something like 40 inquiries a year. I don’t know that they’re able to fund each of them.

And that they’ve helped. Support over 480 adoptions since they were started, which is pretty impressive.

Cory Estby: It is they’re, they’re hardworking, uh, members of the board bringing that awareness and, uh, issuing grants. The grants vary in size up to $7,500, which sometimes could be 20, 25% of the actual adoption expenses from start to finish.

Other times it’s less, but a need based, um, Very gracious. Did

David Hirsch: I remember you mentioning that you had a chance to meet the iconic Ernie Johnson at a gift of adoption event?

Cory Estby: Yeah, a boy that was last year, 2018 for gathered for the gift. Uh, they had Ernie Johnson of a TNT inside the NBA fame. He was their main speaker.

He had a wonderful story to tell with his wife in regards to their family, which involved adoption as well. And also touch the Duchenne community is one of their boys that was diagnosed with Duchenne muscular dystrophy. So he was certainly the, the wonderful presenters spoke in his wife, uh, fabulously.

And if he was the main event, uh, I was certainly the wild card at the back. Uh, speaking my, my wife, Christine, and my daughter, Kaylee happened to be in Branson, Missouri at the time on a dance trip for her. And so it was me and the boys that night. And so Gabriel was 14, 15 at the time I brought our four and three year old, same on GSI with me.

They ate at the table nicely in the midst of this fancy fundraiser. And, uh, I had the opportunity to speak, uh, to, to those in attendance. After listening to Ernie and his wife tell their story, that was a special, special opportunity to meet him.

David Hirsch: Yeah, well, I’ve only read and heard about him. It’s a very impressive story.

And, uh, you know, um, he is a very humble person and I think like you, uh, a wonderful role model, uh, for the rest of us, not only those that are already in the adoption community, but perhaps for those that have contemplated adoption and you know, are intimidated by it. You know, it’s something that I think a lot of people think about and maybe others have pursued.

But it seems like it takes a huge leap of faith and you have to believe right. That God will provide clarity. I’m not talking about financial aid, but you know, in a much broader way.

Cory Estby: Yeah. Yeah. So, you know, adoption is a wonderful Avenue of love and fulfillment fulfillment for a father fulfillment for a mother.

So summit for the child who is granted safety and love. And as you say, it is a leap of faith, you don’t know what the future will hold, but to trust that as you walk through of our shop provider,

David Hirsch: well, in reality, we don’t know what the future’s going to provide anyway. So why is it such a big deal? At some level.

So it’s just a great testimony. Thank you. So one of the things I always ask is what role has spirituality played? And I’m not asking you from a personal perspective because you’ve talked from, start to finish about that already. But I think I remember you saying that, um, the congregation has embraced your family in a way that.

No, it was extraordinary. And that had to do with the parsonage.

Cory Estby: Correct. And then this is in January of 2017, we held a little coffee hour after service invited the congregation to come. We wanted to tell our story of our family and the boys kind of kicked off a little fundraising campaign as well. That was when we ran the Shamrock shuffle here in Chicago.

And that was a fundraiser for raising funds for, for Duchenne my wife and I were not runners. We. Somehow looked like it, I suppose, in those age race. But at that point in sharing with the congregation there, we have a group of leaders called elders, who I meet with on a monthly basis. The next meeting, after we had completed our business and agenda and study together, they said, pastor, we have one more thing on the agenda we want to bring to your attention.

Not from a pastor’s perspective, probably the most horrifying things to think of. What did I preach last Sunday? One more thing. Oh, no, what’s going on. You know? Yeah. Uh, but no, they, they out of compassion wanted to talk about the parsonage, uh, on the property. So the church have a fellowship hall cemetery historic over the last a hundred and almost 150 years and also a home in which has provided to the pastor to live in.

I see a surfing has been our home. For the last 14 years, their family has grown in and through it. It’s also a farmhouse of 130 year rank, which means narrow and, uh, Elevated stairs where the bedrooms are located kind of boxed rooms accessible at all for what the future of mobility would need. And so they entered into a renovation exploration to see what they could do.

Out of love for my family out of love for the parish as well in the future of the congregation. Um, after exploration, they determined sure they could, they could do some renovations, they could do ramps and explore and or add on and such. But after looking at the foundation, electrical and other concerns that are all built into it, they entered a, uh, a project of full demolition and rebuilding.

On the property, a new parsonage that would be fully accessible, not only for our family of the future, but also for future pastors and generations to come for whatever situation may, may be for. It’s going to be designed for a home that if in-laws in generations need to live there. They can, if it’s other medical conditions that are need to be available, very open concept home for, yeah.

So we’re in the midst of that now.

David Hirsch: So are you living through the renovation

Cory Estby: or, well, right now, living through the plan of that, uh, of the parsonage and, uh, um, no. Groundbreaking, probably in may of 2020 is the projected timeframe. We will relocate off property for that time, probably living elsewhere for about a year while still serving the congregation.

And then after it’s done, we’ll move back in.

David Hirsch: Well, that’s wonderful. Thank you again for sharing. Um, so let’s switch to advice. I’m wondering if there’s any important takeaways that come to mind. Beyond the conversation we’ve already had, as it relates to raising a child or children with special needs.

Cory Estby: Every child deserves love. Every child needs, love, not love is shown in a variety of ways. The greatest advice to offer is love those whom has been placed within your realm, whether it’s physical needs, whether it’s emotional needs, whether it’s spiritual needs. Provide be present, be a model and example of love and sacrifice.

Let life become sacrifice.

David Hirsch: Sounds like what you were talking about with your dad.

Cory Estby: Yes, that’s it. We, we, we give of ourselves for the sake of a number within the family. What’s a marriage loving my wife and encouraging her in the midst of her days. Being able to listen to the challenges that she has witnessed with the boys, with the family spectrum.

But then also as a father,

it’s not about me. It’s about the gifts that God has provided for me to care for, and love and serve and be a leader in that regard so that they can grow and willing. Also fall into that role.

David Hirsch: That’s fabulous. Thank you. So I’m curious to know why is it that you’ve agreed to be a mentor father as a part of the Special Fathers Network?

Cory Estby: I have been blessed with conversations that I would never have imagined would have happened or even could have helped me whether it’s conversation with my father growing up, whether it’s a retired pastor, who and his wife welcomed me into their home. Whether it’s a father-in-law, whether it’s a beloved leader of the congregation, we live in a community and that community is there to support and guide one.

Another, having children with special needs is a unique community in itself. It’s not easy. It has its challenges. To provide word of encouragement or word of love, an open ear, an opportunity to simply walk beside another is the greatest thing that we can have in our society. We’re not alone, not intended to be alone, meant to be with one another and community and support.

David Hirsch: It just struck me that, um, Samuel and Josiah are five and four years old and you’re volunteering to be a mentor father. When in reality, you have no more than five years of experience yourself raising a child or children with special needs so that you fall in this category in the middle where you’re putting yourself out there saying, Hey, there’s somebody I can help based on the journey that I’ve had.

I’m happy to open my schedule up and be there he present. But in reality, you have so many years ahead of you. And like you were saying with other families that you’ve met with Duchenne, sort of get a preview, right. And no doubt you benefited from those relationships, those conversations to develop a better understanding or appreciation for.

What the road bike looks ahead. So we’re going to have to sort of identify a couple of other dads perhaps within the network that you might be able to be in fellowship with so that you can benefit from the experiences they’ve had as well.

Cory Estby: Yeah. Yeah. That’s wonderful. Because you know, mentors may serve a very important role for those whom they are encouraging.

But I’ve learned as a pastor, I learned so much more from others as I’m teaching them, they returned back to me. And so as that mentor, yeah, I look forward to learning in the midst of that mentorship.

David Hirsch: Absolutely. Well, thank you for being part of the special fathers network. Let’s give a special shout out to Sharon, come Los game and Zachary Sen at gift of adoption for putting us in contact with one another.

Cory Estby: One wonderful organization with gift of adoption and just the connection to be able to interact.

David Hirsch: If somebody wants to learn more about a gift of adoption, the Dushane community, Zion Lutheran church, or just to contact you, what would be the best way about going to do that

Cory Estby: fruit for gift of adoption? I think if you just do a Google search, they pop up very quickly, regardless to Zion Lutheran church.

Take a look at us on Facebook. We have a little presence there as we serve the community of find me, pastor Corey STB email is probably a great opening connection. Pastoretsb@yahoo.com, pastoretsby@yahoo.com. It could be a great opening opportunity and with the Duchenne community and to learn more in that regard, PPMD said Jett foundation.

These are the communities that are, uh, the families, uh, serving and supporting as we together seek a cure.

David Hirsch: Corey, thank you for your time. And many insights. As a reminder, Corey is just one of the dads. Who’s agreed to be a mentor father as part of the Special Fathers Network. A mentoring program for fathers raising a child with special needs.

If you’d like to be a mentor father or are seeking advice from a mentor father with a similar situation of your own, please go to 21stcenturydads.org. Thank you for listening to the latest episode of this Special Fathers Network, dad to dad podcast. I hope you enjoyed the conversation as much as I did.

As you probably know, the 21st Century Dads Foundation is a 501 c3, not for profit organization, which means we need your help to keep our content free. To all concerned. Please consider making a tax deductible donation today. I would really appreciate your support. Please also post a review on iTunes, share the podcast with family and friends and remember to subscribe.

So you’ll get a periodic reminder when a new episode is produced, Corey. Thanks again.

Cory Estby: Thank you.

Tom Couch: And thank you for listening to the dad to dad podcast presented by the Special Fathers Network. The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs.

Through our personalized matching process, new fathers would special needs children connect with mentor fathers in a similar situation. It’s a great way for fathers to support fathers. Go to 21stcenturydads.org. That’s 21stcenturydads.org.

David Hirsch: And if you’re a dad looking for help or would like to offer help, we’d be honored to have you join our closed Facebook group please go to facebook.com groups and search dad to dad.

Tom Couch: If you enjoyed this podcast, please be sure to like us on Facebook and subscribe on iTunes or wherever you listen. The dad to dad podcast is produced by Couch Audio for the Special Fathers Network. Thanks for listening.