God Please, Not My Son

Joe Perini 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, every joy he was crying. The middle night I told Cindy stay in bed. I'll get Joey tonight and asked my snow scoop them up like little football ring not to family room, turn the light on in his eyes, a close shot at this point. At one point in time he opens his eyes and there was that look and I remember distinctly his picking him up at that point holding them in my arms and saying my son this is family like today. Our hosts are Dave and Ann Wilson and Bob Lapine find us online@familylifetodate.com having a special needs child can be challenging for any couple for a family can also be challenging for your marriage relationship is Joe and Cindy Perini have learned more from them about them today. Stay with us in and welcome to family life to date. Thanks for joining us it's always nice to have friends joining us in the studio is that Dell finds out we've got some friends and colleagues were joining us today Joe and Cindy for any good to have you guys hear that Joe and Cindy we have known for more than a decade. How long have you spoken, we can promote going 20 years now 20 years value for 2020 and I'm feeling really old because you came to Cleveland when we were CMD city ministry director here with that the 90s conference was 91 and we were CMD's for 10 years and then join speaker team 2000. So those folks who are kinda wondering about the lingo here to get daisies. You were part of the team that brought the weekend to remember to Cleveland.

In fact, I think there had not been weekends you brought it to Cleveland yet so the very first one was because you raised her hand and said we have to have all of these are sincerely actually we went to Cincinnati conference Salmon's four hours away from Cleveland and I'm driving back from Cincinnati with their little one euro in the backseat, saying why the world does anybody something on hectic tri-Cincinnati click to go to this conference and so I said to bring the Cleveland yeah that was the origin. After about a decade of bringing the weekend. Remember to Cleveland you guys join 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. Some like that so it's your sweet when we have colleagues who transition off the speaker team but it it's been a joy.

We've had it. Have you spoken with the priest practice with them and sat there recently. So thanks for your years of service and and listeners need to know it's a privilege to do what we get to do any notice to speak to now it's been tens of thousands of people use phones over the years. One of the fascinating things for all of us speaking at a weekend remember is we see people come to faith every weekend and it's just it's a great environment for them thing to hear that God has a lot more for you to do is give you real vision for things to do in the future to talk about some of 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 have been married two years when your son Joey was born right and Cindy. There was no indication before birth or immediately after birth, that there was anything wrong with joy. Now I had a great pregnancy along delivery but he was beautiful. You looked at him and really it was like there is no blemish there. He looked so healthy. The only thing was unsupportive. A side view of his head. His head, his head was really elongated and we just attributed that to birthing process. Well yes and family gels has larger my dad had a larger head summary that will he just has a big fat as time went on and he wasn't lifting his head and he wasn't turning over and he wasn't able to set up and even when you hold the baby either to hands and you gotta lift them up. His had 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 to 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 site, their kids are really doing things that look different than what Joe is doing showing is starting to worry well for me personally I know being a dentist for 41 years you one 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 there's any discomfort or pain. One things I got to do while in dental school Ohio State is that I finished my graph requirements for graduation pretty early on and I got to a menu of things I could've 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 will never forget that look and so it was about the same timeframe. Cindy was talking about my about four months or so I've ever joy was crying. The middle night I told Cindy stay in bed. I'll get Joey tonight and us my snow scoop them up like little football bring about the family room, turn the light on his eyes, a close shot at this point that sex 3 o'clock in the morning and I put them on the floor and thing if I just roll back crawl back and forth a few times again tired and and I just put back in bed as I'm doing that in his eyes a close shot at this point. At one point in time he opens his eyes and there was that look and I remember distinctly his picking him up at that point holding them in my arms and saying my son and I'm not just not back to bed that night I cried myself to sleep that night. I did not tell Cindy anything about this made this was not a definitive diagnosis at this point, but I saw the look and was probably a month or two later that the doctor informed us that Joe had cerebral palsy. Did you not tell her for that whole month. I did tell her until it was diagnosed he had you carry that was an easy but I wasn't about to want to worry her image get enough things to worry about had been a young mom and a new baby. But you know I was pretty confident there was something not right there. You're probably you said you were worried anyway 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 me a little bit further down the road than at that four-month point, but a friend of my head talk to my non-incident. Do you think that there's you noticing some differences in jelly, then the other children. We had like a little party at my mom's house for Joey's first birthday without other one-year-olds were running around. Joey was barely able to sit up straight and highchair.

But you know you as a mom you just love that baby so you aren't thinking why Iran right now. Yeah, he's just a little behind but you know when the doctor did tell us that that he had cerebral palsy began to just sort of open her eyes to what was going to be at first to 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 loud.

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 on 6 foot four, he can't miss him so he's very obvious and so when you think back when you're young mom you think you know what will it be like, and I remember thinking think I can do this and I would have never thought that I would do this for 38 years. No. One thing the Cindy just mentioned this, that he was mentally slow and he is but that doesn't go with Paul's own time.

I mean I have known many patients that have had CP and they would go on leave. Very productive lives, so we cannot say that that's always a connection assurance so we got that diagnosis from the doctor that joy at sea. Me and we were devastated. The doctoring meeting was a real compassionate guy just got up and walked out. At that point.

So were sitting there crying at each other and I thought well I know enough kids who one of the very productive lives that point and I would rationalize us they will lose. He wasn't mentally retarded, which was a term that the use 38 years ago. I know that term is changed over the years, but still the same thing about your later that diagnosed came down that he was also mentally retarded. I got to me.

That was a tough one for me if there was any glimmer of pride or arrogance in my life. Frequent gone and I know in a situation like this I would imagine your first thought is, how do we care for how we provide for how 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 is 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 when did that dawns on you that this can have an impact on our marriage. Any time that you have children, it impacts your marriage, her and so the sleepless nights that I had were no different than any of my friends that had sleepless nights of the illnesses or things after you know they have their shots or any those things they were all the same mean. I think we all experienced in the same when you begin to see that your child is not making progress.

It does affect your marriage because you are you a way of thinking is no longer what 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.

The doctors appointments. The therapies speech therapy, occupational therapy, physical therapy and all of the things that go around those different therapies, doctors, nurses aides to get to school.

You have IEP's, which are the reports that you do at the end of every year to help your child become better. The next year what we can put on his individual educational plan to make them better next year. And sometimes you see the same thing repeated for for 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 cannot 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 you know 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 is a beauty and that is a beauty and all the things Joey learned to. He's never going to be able to be on his own grieving to that know you every day really everyday. In what way is just a several get better.

The reality is that it didn't matter how much I worked didn't matter how much money I made I can help my son and you know how frustrating that is that I can help him get better. You can't fix this. Can't fix that can bring the office and put a patch on it is not going to get better and that reality was much harder for me except that I made for Cindy. She is engaged, and I have to tell you I wish I would've gotten gauge a lot quicker. But you know I think is maybe just a guide to anything but know I was doing my thing. I was going that office.

I was working every day and I thought well why would I do that my son might. That's what I saw my dad to three jobs. Most of his life, and I don't want. I'm contributing to the family here by doing work right. But looking back on those years I realized that what I was having the time was really what we would call a career affair and know it was getting me out of the house and it took a while for me to engage with Julian and Cindy asked as I should have sooner and interestingly enough, mean the person that was really motivational for me to to come to that reality was after Cindy's father who was if I would say not a very religious guy but you know was after a time when joy was in the hospital he thought he had spinal meningitis. Yet grand mal seizures I mean is record was 37 ground Molson one day. But you don't have just the case you have to wild things calm down and so a couple weeks later we decide what just go fishing so we me on my father-in-law and I we went fishing at his pond, and you just are the clear blue turned to me says you know Joe one these days you're going to realize that joy is a blessing. I said you know what I'm have a hard time really accepting.

I will say it eventually sought to me. That was a major contributing factor to me. Finally, engaging in being the Dan that God called me to be to be the death of Joe immediately to pay.

It took a while but it was interestingly enough, my daughter, my younger daughter. The time Christina as I was walking out the door. I remember the Monday I work to do it on Mondays and they were always at the door saying goodbye to Meeks give me a kiss goodbye and she said this very innocently.

Daddy will will we see you tonight or will we see you tomorrow or will we see you the day after that ice. I don't know what was a journey to you.

You said I got to the point where I so Joe is a blessing in your walk. Is 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 that. I'm also I don't like conflict. I don't like pain. It can be easier for me to stay away from it in a sentence.

Sounds like you do a little bit of that I would be struggling with God as well.

Where was that where was your faith in this whole thing both 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 is much for my life is much as he should have been. I didn't feel that really 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.

You know like folders to sign and figure out 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 9-to-5. One day he worked late Monday when early one day he was off, so it wasn't a real set pattern that may be a younger child would get. But the beauty of what she said for couple reasons one that she thought that openness the availability to say something like that to us was 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 a letter from your four-year-old daughter is so sweet of it in that way she's has a real sweet spirit so I'm sure that that was an added plus to suck Dave's question about the journey from grieving the loss and aware not seeing your son is a blessing to a point where you can say God is giving us a gift.

I have to say that during the same time. I was engaging if you will, on a one-on-one fee with what God is, shaking my fist at God and say how dare you do this to my son and I think it was hard for us to, you know were good people and you try to justify. How could this happen to us.

How could a loving God allow this people are going to play by the rules. I will say, and coming home one night from an occasion I said to Joe, I sent I cannot believe, and I was referring to this one particular family who had a lot of that's to say interesting, colorful things in their life and three children who were bright, beautiful, charming, all the things and I said you can't 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 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 them and then I began to look at Joey truly is 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 got just gives it to them and they can stand up and walk across or any of those things. Those took no crying 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 is make such an excitement like you finally figured out the difference between red and black. You know you finally figured that out and some of those things he I don't think he said some of his first sentences until 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 onto 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 is not every day do I have the right attitude and 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 the child 38 years old and say what whether it's conscious or subconscious. We all start marriage with a dream, a picture in our minds of what our lives will be again may not be conscious but we just default my life's going to be okay will have some kids world will have a will go on vacation to just to have this picture and rarely is hard on that pig.

That's right, you realize, by God's design early on, you had to adjust your dream and go our life is gonna be very different than the life we imagined and it's not the one that if you put 10 of them on the shelf and said which one you want to pick this would've been the last one you, how do you find peace with that young boys we talk about it at our conferences, importance of understand God's blueprint for marriage, and I guarantee you on my blueprint was not special needs child right and so we know were running with this blueprint that we had this in our minds. Based upon our background experiences as to what life is going to be like for us and then outcomes Joey and Amber realized that this beautiful blue friends get thrown out. We got to start over right and we had to pursue a new normal for our lives and this really is another way of saying what I was trying to say earlier is that it was difficult for me to engage with that do normal as quickly as Cindy was doing but I needed to go there and you know another aspect of my life that that made it difficult for me to accept Joey as he was, was that all my life sports was important part in my life and I couldn't just give your vision on this one right and we brought Joy home from the hospital.

He was wearing a sleeper from the Ohio State University. Thank you. And he was wearing a clearing in his baseball cap and we had all graphically browse football stuff in the corridor script so you can imagine, has big dreams for my son. There is no friendly very little because there's always tomorrow exactly and so that's the image the nest was part of my blueprint. I was kind of running with this point right and I began to realize that the reality is is that I'm never going to see my son play sports never comply cut son you know and and that was that's difficult even to this day. At night I can play catch with but there when the highlights of Joey grown up. I think it was probably about 10 or 12 I dive onto the claimant and he is gay.

I think the back is part 20 and I was 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 close my eyes thinking, oh boy, I hope you did not hear that you have to remember he is 6 foot four children at the base is like for 45 and so's you open and close my eyes and I get this tapped my shoulder and he says I look at him. I said yes this me run to okay and so after the game we all go now. There is joy 6445 rolled their but I get to when he when we were at first base and got run from 1st to 2nd, third, and that was it right and so it was our turn. And the guy said go I mean Joey he was off and he was off and running with this thing I'm I'm behind countries on fall break and so he had second and he just hit it perfectly just kept on running on dying laughing over here behind him and he only gets 1/3 base. He raises his hands up like you just hit the homerun in the know seventh game of the night. There is seven-game just won the World Series and I'm walking off the field with joy. I'm thinking myself. My son just got the politically mistake I thought mounts not getting better.

This and so that was a big turning point for me as well because I realize that know he's never gonna going to my world.

He's never going to enter into those things I thought was on my blueprint and I think that's true for marriage two weeks we have a plan a dream or vision for marriage and there are things that are to come along in life.

In your marriage that are 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 for our dream. That's right and that's hard to do sometimes our dream was pretty glorious. But God says there's a way that seems right to a man and was going to say the end is so for us to embrace God knows what he's doing, that his ways are perfect that even in challenge I'm suffering these light and momentary afflictions, which is what the Bible calls them are producing in you and eternal weight of glory God's at work in the midst of the tragedy. What 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 will get a copy of your book.

Love always embracing marriage together on the special needs journey.

And I'd say this to you if you know someone and they got a special needs child. This is a great book to give as a gift to that couple go to our website family like today.com.

We got copies of Joe and Cindy's book available there. They bring the mother book called unexpected journey about caring for those with special needs.

We got both books are family like today resource Center. Again, the website is family life to date.com or if you'd like either or both of Joe and Cindy Freeney's books about raising special needs kids were maintaining a marriage with special needs kids at home. You can call to order one 800, FL, today is the number 1-800-358-6329 that's one 800 F as in family L as in life, and then the word today. You know the challenges we talked about the day of keeping your marriage strong when you 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.

That's one of the reasons why we are making available this week for our listeners. Copies of two books hundred ways to love your husband 100 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 to day with a donation you can do it online or you can call to donate at one 800 FL today again the website is family life to date.com or call one 803 586-329-1800 F as in family L as in life and in the word today to make a donation over the phone tomorrow will 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 tension in the lot of extra energy is going in that direction.

Joe and Cindy Freeney back with us tomorrow will want to thank her engineer today. Keep Lynch along with our entire broadcast production team on behalf of our hosts Dave and Ann Wilson about see you back next time for another family life family like to day is a production of family life of Little Rock, Arkansas. Accrue ministry help for today hope for tomorrow