Parent Map: Part 8 – The Parental Perspective: Transcript

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PARENT MAP

The Parental Perspective

Ed Young with Tracy and Debbie Barnes

June 25, 2000

Perspective: Webster says it’s a drawing or painting technique in which objects represented seem to have distance and depth; they take an idea of the relative importance of things; a mental view of the relationship of aspects of a subject to each other and to a whole.  This weekend I’m calling this talk “The Parental Perspective.”

As many of you know, we take staff retreats regularly around Fellowship.  At one of our recent staff retreats, we were asking some of the new pastors to share their life story.  We asked one man to share some of his life experiences, and after he’d been sharing with us for about ten minutes, I looked around the room and there was not a dry eye in the place.  Just to see what God had done in the midst of joy, sadness, and suffering was a real testimony to all of us.  After he finished, the staff looked at me and said, “Ed, we’ve got to share this in church.  He’s got to tell his story at Fellowship.”  So today it’s becoming a reality.  We’re going to talk to Tracy and Debbie Barnes about “The Parental Perspective.”  They have a view, they have a take on parenting, that is really unique; and I promise you it’s going to be really unique for all of you.  Can I tell you a little bit about them before I start to ask questions?  You know how I love to ask questions.

Tracy and Debbie grew up in Irving.  They went to school and all that there.  From there, Tracy felt led to go into the ministry.

ED:  So, I guess about 20 to 23 years ago, Tracy, you actually moved from Texas to Pennsylvania, you and Debbie, to start a church.

TRACY:  That’s right.

ED:  And then from there you were the senior pastor for a while.  Then you moved back to Dallas and stayed here for a couple years, and we were thankfully able to hire you.  You now are the Pastor of Assimilation at Fellowship Church.  I say “assimilation,” which means that, once a person joins Fellowship, Tracy’s leadership skills help you get involved within the life of our church.  So that’s what Tracy does.  You guys have four children.  So, tell me about your family, and let’s get right into it.

DEBBIE:  Okay.  Tracy and I were married in August of 1977, so, if you do the math, that’s 23 years this August.  As you said, we have four children.  Tracy graduated from seminary on a Friday.  Mother’s Day was on Sunday.  Roger was born on Tuesday.  So there were a lot of events that happened right together.  Three weeks later we moved to Pennsylvania.  We took the first grandchild away from the grandparents, which they weren’t too happy about.

ED:  Right, and if I could just interrupt for a second, Tracy’s parents, Howard and Pat Barnes, are founding members of Fellowship Church.  I have fond memories of when we first started this church up and we didn’t have typewriter yet, nor a telephone.  I had this little office in a building complex, and your mom would sit outside the office and wait for me to ask her to do things, as a volunteer, no pay at all.

Description

PARENT MAP

The Parental Perspective

Ed Young with Tracy and Debbie Barnes

June 25, 2000

Perspective: Webster says it’s a drawing or painting technique in which objects represented seem to have distance and depth; they take an idea of the relative importance of things; a mental view of the relationship of aspects of a subject to each other and to a whole.  This weekend I’m calling this talk “The Parental Perspective.”

As many of you know, we take staff retreats regularly around Fellowship.  At one of our recent staff retreats, we were asking some of the new pastors to share their life story.  We asked one man to share some of his life experiences, and after he’d been sharing with us for about ten minutes, I looked around the room and there was not a dry eye in the place.  Just to see what God had done in the midst of joy, sadness, and suffering was a real testimony to all of us.  After he finished, the staff looked at me and said, “Ed, we’ve got to share this in church.  He’s got to tell his story at Fellowship.”  So today it’s becoming a reality.  We’re going to talk to Tracy and Debbie Barnes about “The Parental Perspective.”  They have a view, they have a take on parenting, that is really unique; and I promise you it’s going to be really unique for all of you.  Can I tell you a little bit about them before I start to ask questions?  You know how I love to ask questions.

Tracy and Debbie grew up in Irving.  They went to school and all that there.  From there, Tracy felt led to go into the ministry.

ED:  So, I guess about 20 to 23 years ago, Tracy, you actually moved from Texas to Pennsylvania, you and Debbie, to start a church.

TRACY:  That’s right.

ED:  And then from there you were the senior pastor for a while.  Then you moved back to Dallas and stayed here for a couple years, and we were thankfully able to hire you.  You now are the Pastor of Assimilation at Fellowship Church.  I say “assimilation,” which means that, once a person joins Fellowship, Tracy’s leadership skills help you get involved within the life of our church.  So that’s what Tracy does.  You guys have four children.  So, tell me about your family, and let’s get right into it.

DEBBIE:  Okay.  Tracy and I were married in August of 1977, so, if you do the math, that’s 23 years this August.  As you said, we have four children.  Tracy graduated from seminary on a Friday.  Mother’s Day was on Sunday.  Roger was born on Tuesday.  So there were a lot of events that happened right together.  Three weeks later we moved to Pennsylvania.  We took the first grandchild away from the grandparents, which they weren’t too happy about.

ED:  Right, and if I could just interrupt for a second, Tracy’s parents, Howard and Pat Barnes, are founding members of Fellowship Church.  I have fond memories of when we first started this church up and we didn’t have typewriter yet, nor a telephone.  I had this little office in a building complex, and your mom would sit outside the office and wait for me to ask her to do things, as a volunteer, no pay at all.

TRACY:  I’m just curious, what were her typing skills like?

ED:  They were phenomenal.  They were great.

DEBBIE:  We have four children.  Roger is 21.  He enjoys graphic design and any sport on TV.  Valerie is 19.  She’s an intern here in the preschool.  She’s real active in the 18- to 24-year-old singles’ class and is a student at Tarrant County College.  And Phillip is 17.  He’ll be a junior at Coppell High School.  He’s the computer nut of the house.  If we have any questions, we ask Phillip what we can do.  Then Joanna is the youngest.  She’ll be 10 next month.  She’s the social butterfly, and she’ll be in fifth grade.

ED:  I know that Phillip and Roger have a disease, and this disease is fatal.  Tell me about that.

DEBBIE:  The disease is Duchenne Muscular Dystrophy.  It’s a progressive muscle disease where the muscles are breaking down.

TRACY:  You know, just going back, we had three children.  As we’re looking at the perspective this morning, Debbie and I thought that when we had our three children, Roger, Valerie and Phillip, they were normal, healthy kids.  Off we were going on the parenting road of life.  But one of the things about Roger that I noticed was that he was much slower.  He never was really in step with everybody else, and I just thought, “well, it’s a lack of interest or lack of motivation or whatever.”

Finally, when he reached the age of seven, we held him back a year because he just wasn’t quite ready.  I said, “Roger, here’s what we’re going to do.  Every day when you get home from school, we’re going to go on the swing set equipment in the back yard.  I’m going to have you climb all over that, and you’re going to learn to get more coordinated”—and more of what dad thought he needed to be.  So, every day Roger would come home from school, and dad and son would go in the backyard, and it was a horrible experience.  I would get frustrated, and Roger would cry; and I would get frustrated, and Roger would cry.  He just couldn’t do the things I wanted him to do.

After about a week and a half—I was amazed it even lasted that long, but I was persistent, determined—he was climbing up a ladder, and his rear end was hanging way down.  And I said, “Roger, you don’t climb a ladder like that.  Why do you do that?  You need to stand up on that ladder.”  I reached over and grabbed his thigh to show him how to do this.  When I grabbed his thigh, it was like something connected.  I realized something was wrong.  It’s not that he doesn’t want to do it, it’s that he can’t do it.  I realized something’s not right, so I took him off the slide and over to the patio.  There was about a two-inch concrete slab off the ground, and I said, “Roger, just bunny hop from here to there, from the grass onto the slab.”  I mean, anybody could do it, but Roger couldn’t get off the ground.  He couldn’t get off the ground.  His feet wouldn’t go off the ground.  I asked him to try it again, and he wouldn’t do it.  I then realized there’s something not right here.

The general practitioner, who’d been seeing the kids and had been telling us all along that he’d grow out of it, recommended a pediatrician.  We went to see this pediatrician and put him through all of these physical tests.  Now, looking back, we know exactly what he was doing.  At the end of the tests, he said, “You need to have a blood test on this child, and then I’ll meet with you on Friday.”   So, we had blood drawn and came back three or four days later on a Friday afternoon, walked in this doctor’s office, and he looked at us and he said, “I need to tell you two that your son has Duchenne Muscular Dystrophy.”  I didn’t have a clue what he was talking about and neither did Debbie.

He then began to describe the progression of this disease, “Let me explain the nature of what this is.”  We suddenly began to hear this doctor tell us that our seven-year-old son had a disease where his muscles would slowly waste away and eventually would rob him of his strength.  Then he would die at an early age.  We were stunned.  We left that doctor’s office, but before we left, he looked at us and said, “Oh, by the way, I do need to tell you that you have another son and there’s a fifty-fifty shot that, because it’s genetic, he may have it too.”

Well, we went out and we sat in this little red Rabbit diesel that we had at the time, and our whole world had collapsed.  We just cried, and we cried.  It was an emotional weekend, and at the service at the church, the church rallied.  That night when we got home—finally the weekend was over; it was a long weekend if I recall—and we got to bed and were lying in bed.  The bed began to shake.  It was shaking quite hard, and I realized Debbie was crying, had her face down in the pillow crying.  I rolled her over and said, “What’s wrong?”

DEBBIE:  I was beginning to think about our other son, Phillip, and I began to compare the two of them.  I began to wonder if he would have the same thing.   We took a vacation earlier in the year to Liberty State Park where we saw the Statue of Liberty.  I had lined the three of them up with their backs to me, and I began to think about that picture.  I compared the two of them with their sister, Valerie, and I began to notice that they were standing exactly the same.  Their shoulders were back, their stomachs stuck out because their muscles couldn’t hold them as straight as their sister.  And I just knew.  I had no doubt at that point that Phillip had the same thing that Roger did.

TRACY:  Then I told Debbie, “No, he’s completely different.  He’s completely different.  In fact, let’s take him and get a blood test because that’s what’ll confirm it.”  Debbie said, “No. I can’t do that.”  But I went ahead on Monday and did it anyway, and then told her afterwards that I’d had the blood test done.  The doctor told me that he’d get back to us on a Tuesday.

The following Tuesday at lunchtime, we were at home and the phone rang, “Hello, I’m doctor so-and-so….” You know something is really wrong when a doctor clears his throat three times on the phone.  And he said, “I hate to tell you this, but your other son has it too.”  I don’t know.  I’ve had moments throughout my life, but my world completely fell apart.   I realized that now, not just one, but two sons were carrying a disease that would rob them.  In fact, at that point we didn’t even have a clue as to how or what we’d be facing.  That was 14 years ago and this disease does progress.

DEBBIE:  At that point, thoughts begin to hit you.  Roger had just gotten a bicycle for Christmas.  It hits you: he’s never going to ride that bicycle.  You start thinking about things that they’re never going to do.  Even at that point Roger was still walking, but by the age of ten he was in a wheelchair.  And Phillip followed about the same time when he was ten—he was in a wheelchair.  They slowly began to lose the ability to dress themselves, feed themselves, and by a certain age their backs began to curve.  They had developed scoliosis, so they had to have spinal fusions where a rod was put in their back to straighten them up.  If that didn’t happen, then when they got older that would start to interfere with their breathing.  By their late teens the diaphragm would be so weak it couldn’t breathe or take a deep breath.  They needed to have mechanical support, a ventilator, to help them breathe.  Roger uses one now.  At night he uses a machine that helps him breathe because breathing decreases at night.  Usually the first thing they need is breathing at night.

ED:  Okay.  Take us through a typical day, because again, we’re talking about perspective here.  My perspective of parenting is different, for the most part, from yours due to the difficulties, the storm that you’re in right now.  Talk to us about that.

TRACY:  You know, we live with it all the time.  In the morning when the boys get up they obviously don’t get themselves up.  We have to go in and roll them over and help them go to the bathroom.  We then take them through a breathing treatment, which is necessary twice a day in order to keep the diaphragm working.  If we didn’t do this, the diaphragm would begin to atrophy from lack of use.  From there, we put their pants on and socks on.  They don’t wear shoes anymore, because their feet have curled in, from the lack of use and the muscles and tendons all pulling up.  Then we put them in the wheelchair, and comb their hair.  Now that they’re older, we shave them, and then we brush their teeth.  You do everything for them.  Throughout the day, everywhere you go, you have to do things for them.  Just taking a trip is a small undertaking.  I mean, you’ve got to load them in the back of the van, you’ve got to strap them down, and make sure everyone’s positioned right.

ED:  What do you guys do as a family?  I know, when our family does something, we can pick up and go.  Obviously, you cannot do that.

TRACY:  No, we don’t just pick up and go.  If we go anywhere, like this morning getting here, you’ve got to plan out everything.  We’ve got to make sure they’re taken care of, that all of their needs are taken care of.  That takes time.  I had to get them up this morning and do all the process that needs to be done to get them up.  Roger takes more time because his esophagus is closed off now.  He can’t swallow, so he has a feeding tube in him.  We feed him through a tube, and every morning we have to suction all of the secretions and all the stuff that collects during the night out of his mouth, so that it doesn’t collect in there.  If it does, it’ll aspirate into his lungs, and then he’ll get pneumonia.  So you’ve got to think it through.

One of our favorite activities in the summer is going to movies because Roger and Phillip are very limited.  But even then….  Two weeks ago we went to a movie.  You get geared up and get the day planned.  You’re going to go to the movie.  We get to the theater.  We go in the theater, the three of us.  And the handicapped—we’d never been in this particular theater—and the handicapped seating, the only place that wheelchairs could sit, was right smack in front of the screen, where they were looking into the wall.  And then the screen started three feet above their heads.  And, you know, the rest of the theater seats go up.  And I looked up—and sometimes you just forget that there are people in there—and I said, “Oh man!  Who designed this?  This is great!”  My sons are going, “Style down, man.  It’s okay, it’s cool.”  But you reach a point when you just say, “Oh man!”  Then we had to go find a manager to get our money back because obviously they couldn’t see the movie.   I will say with much credit to the manager of that theater, he handled it extremely well and was very, very helpful.  But, yeah, it’s a process.  It’s difficult.

We went into a restaurant one time in San Diego.  When we got up to the top of this great restaurant with a view of the Pacific we were told about, we couldn’t get in.  There were three steps up and three steps down, and there are two wheelchairs.  The people at the front desk said, “Tell you what.  Why don’t you go downstairs, go outside the building, go around the back of the building, and come up the service elevator.”

DEBBIE:  Where all the freight comes in, you know.

TRACY:  So, we go back down, go outside, all the way around.  We go up the service elevator with all the fruits and vegetables loaded in and up to the top; through the kitchen, you know, winding our way through the kitchen with all of the people just looking like, “Who are you?”  And finally, we come in the back end of the restaurant.  That’s normal.  That’s just a part of our routine and part of our day because of the two wheelchairs and the needs that are there.

DEBBIE:  Because they’re motorized chairs they’re bigger than the average manual chair.  And so, trying to maneuver—you know most restaurants have tables set fairly close together—between the chairs and having to move tables out of the way, it’s quite a spectacle anytime we go to a restaurant.

TRACY:  We don’t blend in real well wherever we go.

ED:  You definitely stand out, huh?

TRACY:  We’re rather obvious wherever we are.

ED:  Tell me this, because it’s something I think and have thought, and knowing you over the years I know many others are probably thinking this question right now: how have you folks dealt with the “Why?” question?  Here you are, a minister, a great Christian woman and family.  Why?

TRACY:  You know, when we first found out and the word began to filter 14 years ago, people began to call from all over.  One of the first things they would always ask is, “How could this be?  How could this happen to you?  You’re a pastor.”  As if somehow we were immune to trouble and immune to difficulty.  As if somehow we had this special line with God that we would avoid these things.

ED:  You know what’s so funny—to make a quick point—I’ve been to Beach Retreat for the last two weeks, and I had a student come up to me and ask me if I ever sinned.

TRACY:  What’d you say?

ED:  Every day.  It’s a common thing.

TRACY:  Yeah, I understand.  I understand.

ED:  They think that pastors are just totally inhuman.  One time someone saw Lisa and I at the grocery store and asked, “You shop at the grocery store?”  Anyway, go ahead.  But it’s the same thing, how could this happen?

TRACY:  I know.  We have angels deliver our groceries.

DEBBIE:  Manna.

TRACY:  Manna from heaven.  Manna from Albertsons.  You know, when you get to the “Why?” question, that’s a hard one because the truth of the matter is there’s no answer to it.  People always try to make sense out of this, and try to find what the purpose is behind all this, and what’s the reason, and ultimately what is the “Why?”  But, you know, I’ve found that the bigger issue is not so much the “Why?” but the “What now?”  The situation is the way it is, and you’re going to have to deal with it, so the “What now?” is more important.  Jesus said that the rain falls on the just and the unjust, and because we live in a world where sin has wreaked its havoc, it affects us all.  Death came as a result of sin, and they go together.  So, the fact that Roger and Phillip were born with this very serious disease doesn’t mean that, as Christ followers, somehow we’re immune to everything that happens.  For us, it became an issue of not so much the “Why?” but more the “Now what?”

People ask us, “How do you do that?”  And our response is generally, “Well, you just do it.”  You don’t really have a choice.  You have a family, you’ve got kids, you’ve got two boys with special needs, and you have to do it.  I’ll be honest with you, they have their days where it’s very, very hard, and there are days when Debbie and I are ready to pull our hair out.  There are days when we walk out the front door and we’re really hurting, and we’re upset.  There are days when we walk outside at night, and you hope nobody’s listening, and you just holler at the top of your lungs to let all the frustration out because it never goes away.  The care is ongoing, seven days a week, 24 hours a day.  Even as we’re taking care of these children during the day, getting them up, putting them to bed at night—Debbie does the night routine, which is a much longer routine—but even then, we have a monitor in our room, a little Fischer Price baby monitor that we still have from all these years so that if they need something, we hear, “Mom….”  Of course, I never understand why it’s always Mom they ask for because it’s always Dad that gets up.  But it’s always, “Mom….”  It never fails, but you know, they have a need, like Roger needing his throat sucked out because too much stuff had collected in there and it’s bothering him.  Or maybe they need to be positioned, or Phillip’s arm has fallen off the bed and needs to be picked back up and put back into position.

ED:  So, it’s the constant 24/7 thing.  It’s always there.  Debbie, you shared something with me yesterday that I loved about what Jesus said because Jesus made some really remarkable statements, some outlandish statements, in his day, and to this day.  Like when He said, “I am the bread of life.”  I like what you said.

DEBBIE:  Well, the “Why?” question can lead you to anger: “God, why did you do this?”  And when you’re angry with God, you tend to pull away and withdraw.  You don’t want to talk to him and you think somehow you can escape from him, but He’s still there.  Eventually, you realize, “This isn’t doing me any good,” and you come back because God is the only one that can help.  When Jesus began to teach about “I am the Bread of Life,” some people thought, “this is weird” and began to pull away from Him.   He turned to His closest followers and said, “Are you going to leave, too?”  And one of them spoke up and said, “Where are we going to go?  You’re the only one with words of eternal life.”  It’s true in our situation.  There is no other place to go.  Where do you get the strength to go through something like this?  How do you do it?  Well, God’s the only one.  He’s the only one you can go to at a time like this.  There is no other place.

ED:  That’s well said.  Tell me about your marriage because I can imagine the stress that is just on any marriage having children.  I’ve talked in this series about the importance of keeping your marriage at the center of it.  Tell us about some of the marital struggles that you’ve gone through related to this and some other issues.

TRACY:  We’ve been through a lot.  I don’t want anybody to get the idea that it’s been this little rose garden, because it hasn’t.  When Debbie and I got married, almost 23 years ago, we knew very little about what it meant—and I, in particular, knew even less—to have a close and intimate relationship with your spouse and the need to work at that.  So, consequently, I didn’t.  And nine years into the marriage, when we discovered about Roger, all of a sudden this major storm hits, big time.  And then Phillip.  Now we’re facing this serious issue, but we didn’t have the background of a relationship that we had been building toward one another.

As a result, the more the needs began to grow inside the family, the more Debbie was being tied down, the more burdening it became. The heavier the weight became, I did the only thing I knew to do: I began to pull away.  I began to emotionally withdraw and slowly pull away from Debbie and immerse myself in my own world—the world of the church, my job, and all the activities of a growing church, and adding staff to this church.  I just immersed myself in that, and over time Debbie and I in our relationship—at first it wasn’t noticeable, but then it became more and more apparent—were drifting and drifting and drifting, until suddenly we were miles apart.  We were living under the same roof but we were miles apart.  In fact, we later found out that typically speaking that people who have situations like ours have a divorce rate of 75%.  One spouse just can’t hack it and leaves—an abandoned ship.

We got to a point in 1994 where we were that close, and I was real close, to abandoning ship because we had so pulled away and didn’t have that support built in or that relationship established between the two of us.   We were just barely hanging on by a thread.

DEBBIE:  We reached the point where we really had no emotional attachment to the other.  We felt nothing for the other person.  I had my world and he had his world.  And that’s where we were; we stayed that way.

ED:  It’s often that we hear that around here.  Couples will say, “Well, the feelings are gone.  We’re miles apart.  We’re just existing.  We’re just living in this house.  Let’s go ahead and spin on our heels and call lawyers and end it.”  Because people think, “If I don’t feel it, there’s no way I can get the feelings back.”  You would say otherwise.

DEBBIE:  Well, when you’re in that situation, you don’t see any hope.  You don’t see that there’s any way things will change because the feelings have left.  What you don’t realize is, if feelings can change one way, they can change back to the other way.  But it doesn’t just automatically happen.  You have to take steps to make sure that that works.

ED:  What are some steps that you guys took to bring you back together, to really reconcile the relationship?  Because I guarantee you that many couples now are saying, “Wow, I can identify here”—not with the pain and toil and suffering you go through with your kids, but they can say, “Hey, I can see where you’re coming from.”

DEBBIE:  Well, first of all, you both have to make a commitment that whatever it takes we’re going to see this through; we’re going to make it work.  That involves making a choice.  You make a definite choice: I am choosing to do this whether I feel like it or not.  To be honest, I didn’t want to.  I wanted to for my kids’ sake because I felt like they were going through enough, and they didn’t need this as well.  But, personally, I didn’t want to.  I was hurt, and I didn’t see that he was going to change at all.

I made a conscious choice that, despite what my feelings say, I’m going to do it.   And that involves things like meeting his needs.  Whether I want to or not, I’m going to do it.  I’m going to be considerate.  I’m going to be kind.  I’m not going to say words to him that would cut him down.  I’m going to speak only positive things.  I may feel differently on the inside, but I’m not going to say those things that I may be feeling at the moment.  “You never do this.”  “You always do that.”  “I’m always doing this.”  I’m not going to do that.

ED:  So what you discovered when you made that choice and began to act, even though you didn’t feel it, was the feelings began to follow.

DEBBIE:  Right, it was slow.  It didn’t happen overnight.  We didn’t wake up one morning and suddenly….

TRACY:  Oh, are we madly in love now?  This is great.

DEBBIE:  It took years, literally, to get to that point.

TRACY:  It took a while.

DEBBIE:  Fortunately, it didn’t take as many years to get back as it did to get to that point, but it did take an amount of time.

TRACY:  It took time in terms of my coming to a point—because I had so withdrawn and so pulled away—of realizing what I had done, to realize the load, and understand what Debbie was going through.  Because, I think, part of my way of dealing with this whole issue with Roger and Phillip was just to divorce myself from it and close it out.  So I had to force myself to come back and say, “No, I’ve got to look head on at this situation and make a commitment to Debbie.”  Slowly but surely we began to really work at our relationship.  And we did, we did some hard work.  I mean, we made a commitment.  The feelings weren’t there, but we made a commitment, and we worked hard at it.  And now, today, it’s a whole different story.  I now love this woman dearly and have tremendous respect.  I don’t know what I’d do without you because we’ve been through so much.  And God has been so good.  Now, what we do, though, is we have to work very hard at our relationship because of the demands.

One of the things that I’ve always appreciated about you and Lisa, and what you talk about so much here, is the date night.  I cannot stress to couples how important that is.  But for us it’s a real hard thing.  We have to really work at it.  Just taking an hour or an hour-and-a-half out of our schedule, because of Roger and Phillip, is not easy.  I mean, there’s a lot of other preparation that has to happen.  But there’s a commitment realizing that, if this relationship here isn’t where it needs to be, it isn’t going to be anywhere else.  And we can’t be to those boys, and we can’t be to our two girls what we need to be if we’re not tight with each other in our relationship.  Okay, if it took what we had to go through to get to this point, then I say “Amen.”  Because I’m glad we are where we are and I look forward to the rest of our lives.  Even today, even though our relationship is solid, we still go home and that storm is still there.  It hasn’t changed.  In fact, it will get worse.

ED:  You were mentioning, too, several years ago in Roger’s life, that he almost died and you and Roger had a conversation that I thought was fascinating.

TRACY:  Roger, when he was sixteen, got really sick.  He got a simple cold, and in three days he had full-blown pneumonia.  We were in the hospital, and then the next thing we know, he nearly dies.  He nearly asphyxiates.  And then we’re in intensive care, and they intibate him, and he’s got all the tubes down him and can’t talk.  So, the only way we could communicate was with a little board with letters on it, and he would point.  Actually, he didn’t point because he couldn’t lift his arm.  I would pick his hand up and help him point to letters and we’d spell out words to communicate.

I had to get across to him, I had to let him know, I said, “Roger, you have to understand that we’re at a real crossroads here.  We don’t know what tomorrow will bring.  You could die.  And we’ve got some choices we’re going to need to make because you can’t stay intibated forever.  When they pull the respirator out, we don’t know what’s going to happen.  They may have to do a tracheotomy on you.  You may not even make that.  You may not make the surgery.  There’s a whole host of things that can happen here.”  I mean, it’s tough; you’re spelling out to your sixteen-year-old all of this stuff.  I’ll never forget.  I said, “Roger, do you understand,” and he spelled back to me—I don’t remember the exact words—but he said, “Dad, it’s Okay.  This life is not anything compared to eternity.  And so you don’t need to worry.”  That is one of the moments I’ll never forget.

Not too long ago, Debbie and I were standing in a funeral home and picking out caskets because we know that sooner or later—and sooner now because of their age; Roger’s twenty-one—they probably won’t live.  At the same time, we were just getting him enrolled at the art institute in Dallas.  And I looked at Debbie and I said, “Man, this doesn’t compute.  On the one hand we’re buying a casket for him, and on the other hand we’re enrolling him in school.  In the midst of all of that, the eternal perspective then becomes a strong dynamic because you realize that his life may be short, but who’s to say that it’s short in terms of what God’s doing?  In comparison to eternity, it’s nothing.  And through it all I come back to something again and again and again where Paul says, “When I am weak, then I am strong.”  His grace is always, always, always sufficient, but you will never know that until you get into the storm.  And then you realize that, yes, he can carry me through this.  It’s going to be okay.

ED:  Tracy and Debbie, the purpose of parenting is to raise whole children, and even though Roger and Phillip’s bodies are broken and twisted, they have whole hearts.

TRACY:  That’s right.

ED:  They know Christ personally.  They have their eternity secured.

TRACY:  That’s right.

ED:  I look at so many parents these days who are so into trying to have the star athlete, so into trying to have this beauty queen, or having this child performing this way and that way.  But so often we forget the most important role of a parent, and that is to tell our children about the love of Jesus—to give them that opportunity to receive Christ because that is what it’s all about.  I said, “Parenting is teaching and training your children to leave.”  You’ve done that, and “leave” for you is even on a deeper level, a greater perspective because we’re talking about leaving this earth.  Very, very soon they will.

I also think, too, as we’ve heard this testimony today that we all need to take a deep look inside our lives, especially those of us who are married, those of us who maybe now who are saying, “I don’t feel it anymore,” those of us who are feeling like failing or jumping ship or cashing in the chips and going to this person or that situation.  It’s not worth it.  We have a living example right here of people who didn’t feel it but acted their way in to feelings because of the commitment.  Man, that’s a strong medicine.

I also just want to reiterate the fact about the sufficiency that you talked about of the grace of God.  In varying degrees of pain, we all deal with pain—not to the level of Tracy and Debbie, but we deal with it.  But the beautiful thing about God is that His grace is sufficient.  It’s sufficient for that day.  If you guys concentrated on tomorrow….

TRACY:  You can’t do it.

ED:  Two years?  No, no, no.  You can’t, can you?  You’ve got to say, “It’s for today.”

TRACY:  It’s today.

DEBBIE:  And sometimes you even have to take smaller increments.  You know, this hour I can do it because God’s going to be the strength just for this hour.  Sometimes you have to break it down even smaller than a day.

ED:  I want to tell you what an encouragement that you are to me.  I can see God all over you and your family, through this suffering and through the pain.  I want you to know that we love you, and we’re going to pray for you.  And I hope that you get a chance to get to know these folks because you will learn just some great, great lessons about what it means to really live life on the parent map—a map of a unique perspective.