God Please, Not My Son

Joe Ferrini remembers the first time that his and his wife Cindy's firstborn son, their son Joey, might have any special needs, any special challenges. Joey was about four months old. I remember Joey was crying in the middle of the night.

I told Cindy, you know, stay in bed, I'll get Joey tonight. And so I scoop him up like a little football, bring him out to the family room, turn the light on. I mean, his eyes are closed shut at this point. At one point in time, he opens his eyes. And there was that look.

And I remember distinctly just picking him up at that point, holding him in my arms and saying, Oh, God, not my son. This is Family Life Today. Our hosts are Dave and Ann Wilson. I'm Bob Lapine. You'll find us online at familylifetoday.com.

Having a special needs child can be challenging for any couple, for a family. It can also be challenging for your marriage relationship, as Joe and Cindy Ferrini have learned. We'll hear more from them about that today. Stay with us. And welcome to Family Life Today. Thanks for joining us. It's always nice to have friends joining us in the studio, isn't it? It's so fun. So we've got some friends, some colleagues who are joining us today, Joe and Cindy Ferrini, and good to have you guys here.

Thank you so much. Joe and Cindy, we have known for more than a decade. How long have you spoken at Weekend to Remember Getaways? Twenty years now. Twenty years. Twenty years.

It's so hard to believe. We've known you for 20 years. I'm feeling really old now. Well, we've known you longer than that because you came to Cleveland when we were CMDs, City Ministry Directors.

That's right. What year was that, do you think? The 90s. The first conference was 91, and we were CMDs for 10 years and then joined Speaker Team in 2000. So those folks who are kind of wondering about the lingo here, CMDs. CMDs. You were a part of the team that brought the Weekend to Remember to Cleveland.

In fact, I think there had not been Weekends to Remember. We brought it to Cleveland. Yeah, so the very first one was because you raised your hand and said, we have to have one of these in our city.

That's right. Actually, we went to the Cincinnati conference, and it was four hours away from Cleveland. And I'm driving back from Cincinnati with our little one-year-old in the backseat saying, why in the world does anybody from Cleveland have to drive from Cincinnati to go to this conference? And so I said, let's bring it to Cleveland.

And that was the origin. After about a decade of bringing the Weekend to Remember to Cleveland, you guys joined the team of folks who go around and speak at these events, and you have just completed your final Weekend to Remember. It was number 100? Something like that.

Yeah, it's close. So it's bittersweet when we have colleagues who transition off the Speaker Team, but it's been a joy. We've had the – have you spoken with the Perini's?

Yeah, we were just with them in Chattanooga recently. So thanks for your years of service, and listeners need to know it's a privilege to get to do what we get to do and to speak to – now it's been tens of thousands of people you've spoken to over the years. One of the fascinating things for all of us speaking at a Weekend to Remember is we see people come to faith every weekend, and it's a great environment for that. And it's exciting to hear that God has a lot more for you to do. Sure. You know, he's given you a real vision for things to do in the future. Right. Let's talk about some of that. Yes, thank you. Yeah, the vision for the future is really tied to what have been your life circumstances, and it's a part of a new book you've written called Love All Ways, which combines your story with some guidance for couples who are parents of special needs kids. You guys had been married two years when your son Joey was born, right?

That's right. And Cindy, there was no indication before birth or immediately after birth that there was anything wrong with Joey? No, I had a great pregnancy, a long delivery, but he was beautiful. You looked at him and really it was like there was no blemish.

He looked so healthy. The only thing was on sort of a side view of his head. His head was really elongated. And we just attributed that to the birthing process.

Well, yes, and family. You know, Joe's head is larger, my dad had a larger head, so we thought, well, he just has a big head, you know? But as time went on and he wasn't lifting his head and he wasn't turning over and he wasn't able to sit up, and even when you hold a baby by their two hands and you go to lift them up, his head never was first. He never tried to lift his head.

It just kind of hung there. And so, you know, that's maybe a three-month-old should be able to just lift their head up pretty well. And it was six, maybe seven months, and he still wasn't doing any of those things. And my friends who had children of the same age, I was like, their kids are really doing things that look different than what Joey's doing. Joe, were you starting to worry? Well, for me personally, you know, being a dentist for 41 years, you know, one of the things we learned in dental school early on is that you always want to look into the eyes of your patients to see how they're doing, if there's any discomfort or, you know, pain.

One of the things I got to do while in dental school at Ohio State is that I finished my requirements for graduation pretty early on, and I got to a menu of things I could have done with my discretionary free time, and I chose to work at University Hospital in Columbus, Ohio, working, doing dentistry for the handicapped kids. And as I would work on these kids' teeth and I would look into their eyes, there is a distinct look there. I mean, once you see that look, I guarantee you, you'll never forget that look.

And so it was about the same time frame Cindy was talking about, probably about four months or so. I remember Joey was crying in the middle of the night. I told Cindy, you know, stay in bed, I'll get Joey tonight. And so I, you know, scoop him up like a little football, bring him out to the family room, turn the light on. I mean, his eyes are closed shut at this point because it's next to three o'clock in the morning. And I put him on the floor, I'm thinking, if I can just roll him back, roll him back and forth a few times, I'll get him tired and then I'll just put him back in bed.

Well, as I'm doing that and his eyes are closed shut at this point, at one point in time, he opens his eyes and there was that look. And I remember distinctly just picking him up at that point, holding him in my arms and saying, oh, God, not my son. And I mean, I just, you know, put him back to bed that night.

I mean, I cried myself to sleep that night. I did not tell Cindy anything about this. I mean, this was not a definitive diagnosis at this point, right? But I saw the look and it was probably a month or two later that the doctor informed us that Joey had cerebral palsy. Did you not tell her for that whole month? I didn't tell her. Until it was diagnosed?

Right. How'd you carry that? It wasn't easy, but I wasn't about to want to worry her. I mean, she had enough things to worry about, being a young mom and a new baby. But, you know, I was pretty confident there was something not right there. And Cindy, you were probably, you said you were worried anyway. Well, I think we had some friends who had been asking some questions and just watching them with their children.

And this is, my part right here is maybe a little bit further down the road than at that four-month point. But a friend of mine had talked to my mom and said, do you think that there's, are you noticing some differences in Joey than the other children? We had like a little party at my mom's house for Joey's first birthday. Well, the other one-year-olds were running around.

Joey was barely able to sit up straight in a high chair. But, you know, as a mom, you just love that baby. So you aren't thinking what could be wrong, you know? Yeah, he's just a little behind. But, you know, when the doctor did tell us that he had cerebral palsy, it began to just sort of open our eyes to what was going to be. You know, at first you hear that and even the neurologist that we would go to, he would say, you know, he's behind but he'll catch up. But, you know, sometimes you hear those words and you believe them, you want to believe them, but most likely they aren't going to catch up to where your other typically developing children are. So while Joey has come a long way in his 38 years, he is going to always obviously be mentally slow, verbally almost unable to talk. He gets his point across quite well, but six foot four, you can't miss him, you know?

So he's very obvious. And so when you think back when you're a young mom, you think, you know, what will it be like? And I remember thinking, I don't think I can do this.

And I would have never thought that I would do this for 38 years. You know, one thing that Cindy just mentioned is that he's mentally slow, and he is. But that doesn't go with cerebral palsy all the time. I mean, I've known many patients that have had CP and they would go on and lead very productive lives.

And so we cannot say that that's always a connection there. So when we got that diagnosis from the doctor at the edge, Joey had CP, I mean, we were devastated. I mean, the doctor immediately, he wasn't a real compassionate guy, he just got up and walked out at that point.

And so we're sitting there crying at each other, you know? And I thought, well, I know enough kids who went on and lived very productive lives at that point. And I would rationalize and say, well, at least he wasn't mentally retarded, which was the term that they used 38 years ago.

I know that term has changed over the years, but it's still the same thing. And about a year later, that diagnosis came down that he was also mentally retarded. I mean, that was the tough one for me.

I mean, if there was any glimmer of pride or arrogance in my life, it was pretty much gone at that point. And I know in a situation like this, I would imagine your first thought is, how do we care for, how do we provide for, how do we help this child? But later on, it dawns on you, this is not just about Joey and his life.

Your whole life has been changed by this gift, this hard gift God has given you. And that's going to affect the oneness that the two of you got married to experience and pursue and enjoy. When did that dawn on you that this is going to have an impact on our marriage? Any time that you have children, it impacts your marriage. And so the sleepless nights that I had were no different than any of my friends that had sleepless nights. The illnesses or things after, you know, they have their shots or any of those things, they were all the same.

You know, I think we all experienced them the same. But when you begin to see that your child is not making progress, it does affect your marriage. Because your way of thinking is no longer what's sort of good for us in this relationship, but a lot of what you do is now on this child.

Now, you don't always need a child-centered marriage, right? But when you have a special needs child, you can't help for it to be pretty child-centered. There were the doctor's appointments, the therapies, speech therapy, occupational therapy, physical therapy, and all of the things that go around those different therapies. Doctors, nurses, aides, you get to school, you have IEPs, which are the reports that you do at the end of every year to help your child become better the next year.

What are we going to put on his individual educational plan to make him better next year? And sometimes you see the same thing repeated for four or five or six years in a row. That's where things begin to be different, where you start to see that it's not going to get better.

And it's never going to get better. And he is never going to leave this house short of his death or someday our death. Because he can't do it. It's not a matter of he can eventually learn. He's learned a lot, but he's not going to learn enough to be on his own. And that's where it's, if you will, easy with our typically developing children, that you train them, it's exciting, you watch them gain and gain and gain, and then leave, and you see them accomplish things. And there's a beauty in that.

And there's a beauty in all the things Joey learned too, but he's never going to be able to be on his own. Was there a grieving to that? Every day. Really?

Every day. In what way? It's just that he's never going to get better. The reality is that it didn't matter how much I worked, it didn't matter how much money I made, I can't help my son. Hey man, you know how frustrating that is? That I can't help him get better? You can't fix this. I can't fix that. I can't bring in the office and put a patch on it. It's not going to get better. And that reality, it was much harder for me to fix up that.

For Cindy, she's engaged, and I have to tell you, I wish I would have gotten engaged a lot quicker, but I think it's maybe just a guy DNA thing. But I was doing my thing. I was going to the office, I was working every day, and I thought, well, why wouldn't I do that?

That's what I saw my dad do every day. He worked two or three jobs most of his life, and I thought, well, I'm contributing to the family here by doing work. But looking back on those years, I realized that what I was having at the time was really what we would call a career affair. It was getting me out of the house. And it took a while for me to engage with Joey and Cindy, as I should have, sooner. And interestingly enough, the person that was really motivational for me to come to that reality was actually Cindy's father, who was, if I would say, not a very religious guy, but it was after a time when Joey was in the hospital, we thought he had spinal meningitis, he had grand mal seizures.

I mean, his record was 37 grand mal's in one day. But that's just the case. After a while, things calmed down. And so about a couple weeks later, we decided we're just going to go fishing. So my father-in-law and I, we went fishing at his pond, and out of the clear blue, he turns to me and says, you know, Joe, one of these days you're going to realize that Joey is a blessing. I said, you know what, I'm having a hard time really accepting that one.

I don't see it. Well, eventually I saw it. I mean, that was a major contributing factor to me finally engaging and being the dad that God called me to be, to be the dad that Joey needed me to be. It took a while, but it was, interestingly enough, my daughter, my younger daughter at the time, Christina, as I was walking out the door, I remember it was a Monday, I worked two to eight on Mondays, and they were always at the door saying goodbye to me, give me a kiss goodbye. And she said this very innocently, Daddy, will we see you tonight or will we see you tomorrow, or will we see you the day after that?

And I said, well, I don't know. What was that journey to you? You said I got to the point where I saw Joey as a blessing.

Can you walk us there a little bit? Because I'm imagining if I'm you, Joe, I'm doing exactly the same thing. I am pouring my life into my job because I need to and provide, but I'm also, I don't like conflict.

I don't like pain. It's going to be easier for me to stay away from it in a sense. Sounds like you did a little bit of that, but I would be struggling with God as well. Where was your faith in this whole thing?

Both of you, really. Well, let me take one step back and say what he just shared with his heart and how he felt like he wasn't a part of Joey's life as much or my life as much as he should have been. I didn't feel that. And I felt like when he was home, he was present at home and he never brought a bunch of stuff home from the office, like folders to sign and figure out and everything. He came home and he was present. So I never felt that. But when Christina said to him, when will I see you next, a lot of that had to do with his office hours were not nine to five.

One day he worked late, one day he went in early, one day he was off. So, it wasn't a real set pattern that maybe a younger child would get. But the beauty of what she said, for a couple reasons. One, that she felt the openness, the availability to say something like that to us was good.

You know, that she wasn't afraid. What if I say this to my dad or my mom? So, I think that God used that just to really put him in the right frame of mind, even though I didn't feel that he wasn't doing his job. But God had to teach him and minister to his heart to be able to do what was right for our family. And you probably received it better from your four-year-old daughter. That's right, she could not have said that today.

Right, exactly. It's so sweet of God to do it in that way. And she has a real sweet spirit, so I'm sure that that was an added plus too, you know?

Absolutely. Back to Dave's question about the journey from grieving the loss and aware and not seeing your son as a blessing to a point where you can say, God has given us a gift. I have to tell you that during the same time period, I was engaging, if you will, kind of one-on-one, if you will, with God. Just kind of shaking my fist at God and saying, how dare you do this to my son? Well, and I think it was hard for us too, you know, we're good people and you try to justify, how could this happen to us?

How could a loving God allow this to happen? Allow this to happen, yes. To people who are trying to play by the rules. Yeah. To play by the rules.

Right. And coming home one night from an occasion, I said to Joe, I said, I cannot believe, and I was referring to this one particular family who had a lot of, let's just say, interesting, colorful things in their life. And three children who were bright, beautiful, charming, you know, all the things.

And I said, I don't get it, like how, that happens to them and look what happens to us. And he looked at me and he said, imagine if Joey were in that family. And that moment, I realized what a gift Joey was to us because he would never have made it in that family and that family had a lot of tragedy. And they wouldn't have made it with Joey and Joey wouldn't have made it with them.

And then I began to look at Joey truly as a blessing. And as life goes on and you see in your child what they're learning, what little teeny steps they're taking that your other kids just could do just because it was the next thing on the list to check off. And God just gives it to them and they can stand up and walk or crawl or any of those things. Those took, you know, crawling took like 13 steps to teach Joey how to crawl.

Months and months and months and months of repeated physical therapy to teach him that. So when you see what they do, there's like such an excitement, like you did it. You finally figured out the difference between red and black.

You know, you finally figured that out. And some of those things, I don't think he said some of his first sentences until, and they were three or four words, he was 12. So as you see those, those become the little blessings, the little things that you can hang on to to say that God is faithful. But it sure was a long time of being able to see those things and see that faithfulness in God to give us the endurance and the strength and really the right attitude. Because not every day do I have the right attitude. You know, I'd like to be saying that I do, but those are the things that add up to see when you become where we are now, you know, with a child 38 years old, that we can say what a blessing. You know, whether it's conscious or subconscious, we all start marriage with a dream and a picture in our minds of what our lives will be. And again, it may not be conscious, but we just default.

My life's going to be okay, we'll have some kids, we'll have a, you know, we'll go on vacations. You just, you have this picture. And rarely is hard in that picture. That's right. You guys, by God's design, early on, you had to adjust your dream and go, our life is going to be very different than the life we imagined. And it's not the one that if you'd have put 10 of them on the shelf and said, which one do you want to pick, this would have been the last one you'd have picked, right? That's right. So how do you find peace with that?

Yeah. Well, as we talk about at our conferences, the importance of understanding God's blueprint for marriage. And I guarantee you, on my blueprint was not special needs child, all right? And so, you know, we're running with this blueprint that we had this in our minds based upon our background experiences as to what life was going to be like for us. And then out comes Joey and we're realizing that this beautiful blueprint is going to have to get thrown out and we got to start over, all right? And we had to pursue a new normal for our lives. And this really, that's another way of saying what I was trying to say earlier is that it was difficult for me to engage with that new normal as quickly as Cindy was doing. But I needed to go there. And, you know, another aspect of my life that made it difficult for me to accept Joey as he was, was that all my life, sports was an important part of my life.

And I couldn't, just to give you a visual on this one, right? And when we brought Joey home from the hospital, he was wearing a sleeper from the Ohio State University. The Ohio State University. That's right. That's right.

Thank you. And he was wearing a Cleveland Indians baseball cap. And we had an autographed Cleveland Browns football stuffed in the corner of his crib.

So, I mean, you can imagine I've had some pretty big dreams for my son. There's no fans like the Cleveland fans. There really isn't. There really isn't. Because there's always tomorrow. Exactly.

And so, I mean, that's the image and that was part of my blueprint I was kind of running with at this point, right? And I began to realize that the reality is, is that I'm never going to see my son play sports. I'm never going to play catch with my son, you know? And that's difficult. And even to this day, I mean, I can't play catch with him.

Right. But I can tell you one of the highlights of Joey growing up, I think he was probably about 10 or 12. I brought him to a Cleveland Indians game. And I take that back, he was probably about 20. And we're sitting in the right field bleachers and about the seventh inning, the announcement comes over the speaker and says that after the game, children will be able to run the bases at Cleveland Stadium. I'm just closing my eyes thinking, oh, boy, I hope he did not hear that.

Because you have to remember he is six foot four and children are going to be running the bases. Right. These are like four and five-year-olds, right? And so, you know, I open, I close my eyes and I get this tap on my shoulder. And he says, I look at him, I said, yes. He says, me run too. I said, okay. And so after the game, we all go down there and, you know, here's Joey six foot and they got these four or five-year-olds there. But I'll tell you, when he, when we were at first base and got to run from first to second or third and that was it. Right.

And so it was our turn. And when the guy said go, I mean, Joey, he was off and he was off and running with this thing. I'm behind him because I'm sure he's going to fall.

Right. And so, I mean, he hit second and he just hit it perfectly. He just kept on running. I'm dying laughing over here behind him. And then when he gets to third base, he raises his hands up like he just hit the home run.

And, you know, the seventh game of the ninth inning, the seventh game just won the World Series. And I'm walking off the field with Joey and I'm thinking to myself, my son just got to play at Cleveland State. I thought, man, it's not going to get any better than this. And so that was a big turning point for me as well because I realized that, you know, he's never going to go into my world.

He's never going to enter into those things I thought was on my blueprint. And I think that's true for our marriage too. We have a plan, a dream, a vision for our marriage, and there are things that are going to come along in life in your marriage that are going to be different than you expected. And we have to get to a point where we can believe honestly that God's plan is better than our plan. Or our dream. That's right. And that's hard to do sometimes because our dream was pretty glorious.

It was. But God says there's a way that seems right to a man. And what does it go on to say? The end is death. So, for us to embrace that God knows what he's doing, that his ways are perfect, that even in challenge and suffering, these light and momentary afflictions, which is what the Bible calls them, are producing in you an eternal weight of glory. God's at work in the midst of the tragedy.

What we have to do is align ourselves with God's purposes. And when it comes to marriage, in the midst of this, we've got to make sure that marriage continues to be the priority that by God's design it ought to be. I would hope every parent who has a special needs child would get a copy of your book, Love Always, Embracing Marriage Together on the Special Needs Journey. And I'd say this, too, if you know someone and they've got a special needs child, this is a great book to give as a gift to that couple. Go to our website, familylifetoday.com. We've got copies of Joe and Cindy's book available there. They've written another book called Unexpected Journey about caring for those with special needs. We've got both books in our Family Life Today Resource Center. Again, the website is familylifetoday.com, or if you'd like either or both of Joe and Cindy Ferrini's books about raising special needs kids or maintaining a marriage with special needs kids at home, you can call to order 1-800-FL-TODAY is the number.

1-800-358-6329, that's 1-800-F as in family, L as in life, and then the word today. You know, the challenges we've talked about today of keeping your marriage strong when you've got a special needs child, really all of us face challenges and pressures, especially in the last few months. We've all been experiencing the cultural challenges and pressures in our world that keep us from doing a good job of loving one another. They distract us.

They take us away from that. And that's one of the reasons why we are making available this week for our listeners copies of two books, A Hundred Ways to Love Your Husband, A Hundred Ways to Love Your Wife by Matt and Lisa Jacobson. Their books are our gift to you when you reach out to support the Ministry of Family Life Today with a donation. You can do it online or you can call to donate at 1-800-FL-TODAY.

Again, the website is FamilyLifeToday.com or call 1-800-358-6329, 1-800-F as in family, L as in life, and then the word today to make a donation over the phone. Tomorrow we're going to continue our conversation about how you build a strong marriage when in your family there is a child who has special needs, and that means a lot of attention and a lot of extra energy is going in that direction. Joe and Cindy Ferrini will be back with us tomorrow. Hope you can be back with us as well. I want to thank our engineer today, Keith Lynch, along with our entire broadcast production team. On behalf of our hosts, Dave and Ann Wilson, I'm Bob Lapine. We'll see you back next time for another edition of Family Life Today. Family Life Today is a production of Family Life of Little Rock, Arkansas, a crew ministry. Help for today. Hope for tomorrow.