Encouragement for Families With Disabilities

Joni: I was talking to a young quadriplegic woman the other day.  I said, "Sweetheart, you can go on your laptop with your mouthstick, and you can order groceries from your local supermarket over the Internet.  Did you know that you could do that?"  And, suddenly, you could see in her eyes hope that she was able to somehow gain a sense of normalcy by – what do you know?  Shopping for groceries over the Internet.  She might have to do it with a mouthstick on a laptop, but she could do it.

Bob: This is FamilyLife Today for Friday, March 16th.  Our host is the president of FamilyLife, Dennis Rainey, and I'm Bob Lepine.  We'll hear today how the ministry of Joni & Friends is helping tens of thousands of families with disabilities.

 And welcome to FamilyLife Today, thanks for joining us.  Dennis?

Dennis: Bob, it was a number of years ago when our son, Samuel, was 13 or 14, I forget the exact age.  If Barbara was here, she'd remember, but he was ranked number 7 in the state as a tennis player, had the number-one player at match point, had him beaten.  The other kid rallied, came back and beat our son, Samuel, in tennis, and a few weeks later we were running through the airport in Dallas to catch a plane, and we noticed that Samuel couldn't keep up with us. 

 And here was our son, the most athletic of all of our kids, falling on his face in the airport multiple times.  And the following Monday when we got back to our home, we went to a doctor and on Monday afternoon found ourselves in a neurologist's office with the pronouncement that our son had a rare neurological disorder where his ability to run was taken away, and he would never run again.

 You know, there were no family camps, there was no book or any kind of radio broadcast by someone with a disability to bring comfort to us and to put that in perspective.  Barbara and I, over the period of the next few months in that summer were left to deal with that with ourselves, and I want to tell you something, I can still remember the wounds, they were fresh, as we sought to restore our son, and it couldn't happen.  Our son now had a disability.  He had a physical limitation, and it was interesting.  It impacted our family, it impacted our marriage, and it impacted us each individually.

 And I remember getting to know God in a way, that summer, that I'll never forget, either.  If I hadn't been a Christian, I don't know if our marriage would have survived that experience.  I honestly don't know where people go and how people cope when they are dealt a severe blow like a disability in the midst of their family.

Bob: Well, and we hear from listeners where, in their family dynamic, it may come on in an instant through an accident or through a set of circumstances.  It may be something that develops over time, slowly.  There are some listeners who, as you know, have adopted children who they knew they have special needs, they're bringing them into their family and into their home, and you do wonder – is a family ever fully prepared for the impact that a physical disability is going to bring into the family dynamic and the family relationship?

 And if there's anybody who can help us think through those dynamics, it's the guests we have on our program today – Joni and Ken Tada, who are joining us.  Welcome back to the program, guys.

Joni: Good to be with you.

Ken: Thank you.

Bob: And I know, for you, you started your marriage with a full awareness of a disability being a part of that.  But, Joni, let me take you back when it hit your family that the normal, healthy family now had a member who was disabled.  Did it have an impact all the way around – on your sisters, on your parents, do you remember?

Joni: I learned later on from my family members when we would sit down and talk about this years afterward – my sisters felt as though they were out of the picture because Mom's focus was now entirely on Joni.  My sister was preparing for a wedding, and she basically didn't have a mother helping her because Mom was at the hospital with Joni.  So my sister, Kathy, had to pretty much make her own wedding plans, and that was a cause for some resentment on Kathy's part.

 My dad, bless his heart, cooked more than many of the evening meals for the rest of the family, and my mother almost had a breakdown I learned later on.  So at the time, when I was in the hospital, it appeared as though the entire family was just doing fine through this crisis, but later I learned that each of them was struggling with special challenges.

Dennis: A crisis like this, where a child all of a sudden is handicapped recalibrates the entire family.  I mean, we experienced it.  It's like the orbits of the solar system change around who they're revolving around and how the other planets handle it is really an interesting process.  That has to be a good bit of why you guys, through your ministry, Joni & Friends, have come up with these family retreats where you seek to minister to couples and to families who are in the midst of dealing with these very issues, right?

Joni: Oh, yes, my goodness.  The National Organization and Disability cites a divorce rate of over 80 percent for families that have a disabled member.  There are 4 million children with disabilities under the age of 14.  That's a lot of kids – with autism and Down syndrome, spina bifida.  There's issues of sibling rivalry, what about education?  What about the school system?  You are a parent who now has to sit in what is called an IEP, and Individualized Educational Program, and you're fighting with your teacher to get your child all the educational opportunities that he is deserving of.

 There are so many issues with disciplining a child with a disability, the dynamics between husbands and wives.  So we, at these family retreats, want to create a setting where Mom and Dad can come, and they can sit in on a workshop about resolving conflicts between siblings and sibling rivalry. 

 There will workshops about setting up a trust fund if he needs long-term care.  But most of all we have found that parents just enjoy hanging out with other moms and dads, other parents, and sharing ideas, sharing resources, what works, what doesn't work.  Just knowing you're not alone in this world of handicapping conditions is what seems to help most of the moms and dads.  Do you think so, Ken?

Ken: I think the networking has been the real key in those family retreats.  We see that many of the families still hang together during the rest of the year.  They share phone numbers, and they're able to call and have resources.  They just know that they're not out there by themselves.

Dennis: It becomes a support group.

Ken: But I do want to say this, Bob and Dennis, that Joni mentioned 80 percent of families that have a disability end in divorce.  That's when the disability occurs after the marriage, after the marriage is consummated.  But if you go and look at the same statistics, 80 percent of marriages stay together when the disability occurs prior to the marriage, when you're going into a marriage with a disability.  It's an interesting fact.

Bob: I'm curious about this – in the moment when the reality of a disability becomes clear in a family dynamic – in your case, it was when you were 17, and you had your diving accident.  In some cases, it's when a husband and wife go to the gynecologist, and they're expecting a healthy report, and they walk away with problems, perhaps, in the pregnancy, or it may be in the labor and delivery room where you're expecting this joyous experience of having a baby, and the doctor says, "We have a problem."

 Whenever it happens, what are the dynamics that begin to shift?  How do the plates adjust at that moment?  What would you say?

Joni: Hope shattered and unmet expectations.  I often hear that from mothers who give birth to a child with a disability.  Suddenly, all the baby shower gifts sit in the boxes.  Friends and neighbors just aren't sure what to say when you're holding this little baby in your arms, and there's a lot of awkwardness, a lot of social isolation.

 Of course, a lot of financial strain, and the day-to-day routines become absolutely burdensome when it involves weekly medical appointments, who is going to be available to drive my child to the next therapy appointment.  So many pressures, so many obstacles and barriers to overcome, and that's why we spend a lot of time at our ministry helping churches understand how they can reach out to these special needs families and open up their arms and welcome and embrace these families.  Not as a liability in a congregation but an asset, a family around whom brothers and sisters in Christ can come and learn how to serve sacrificially, learn how to help, learn how to just be there.

Bob: And if you were going to give a handful of coaching tips, let's say that a congregation has just gotten the news that a couple is bringing home a baby with spina bifida, or let's say that there's been an accident, and a child is a paraplegic.  What kinds of coaching tips would you give to those of us who know that family about how we ought to respond?

Joni: Well, it's interesting, because Ken and I are dealing with a couple of young couples right now who are experiencing just this – disability in their family.  And we have been working with a couple of local churches and how those churches can assist.  Basically, we encourage a church to just assign a point person, perhaps a woman who is close to the mother or a guy who is close to the dad, and ascertain what those needs are.  Just give me give basic needs.  Do you need Friday night off?  Do you need somebody to come in and help with a bowel routine or a bathing routine?

 We could be talking now about an elderly parent with dementia who is living in the household.  How can you help?  What are some practical ways we can assess?

 And then, by all means, after you've got a list of those practical needs, work with a volunteer committee in your church, work with your deacon's board, maybe there's a financial need that's required, or a need for transportation.  But let that point person kind of be the traffic cop or the switch operator who connects the individual with a special gift to that need, which can be met.

 Sometime the family just wants thing to be normal – come over and play board games with us.  Come over and let me teach you how you might babysit my special needs child.  Don't be frightened; don't feel awkward.  There is no question you can ask that I would be afraid to answer.  And let's put it all on the table and get all your fears out, and let's talk about this in a way that will build bridges rather than burn them.

Dennis: Joni, Bob asked about what a church could do.  Undoubtedly, as you and Ken have interacted with couples through your family retreats, you've learned some things couples need to do for themselves.  Could you just quickly give us some things to do and some things not to do?  And you've already mentioned a couple.  One of the things you've mentioned is not get isolated but find a way to connect with other people who are facing similar challenges and get a support group of sorts – somebody you can call when you're down or when you've got a question or someone who can just come alongside you and say, "You're doing a good job."

Joni: God never intended that we should suffer alone, and yet that's what so many families do.  They'll sequester themselves away and become socially isolated, fearful to ask for help. 

 But the Bible makes it clear, when we've got a need, we should feel free to ask for help in a congregation.  And that's good for the congregation.  It teaches them how to serve sacrificially.

 So, number one, please ask for help.  Go to your deacon's committee or go to your prayer group in your congregation and ask for prayer about those things in your family that you really need help for.

 And, secondly, when people start to help you, when they come over, when they assist with the getting-up-in-the-morning routines or going-to-bed-at-night routines, make certain you express gratitude, make certain that you say thank you.  Ken and I do that a lot, don't we, Ken?

Ken: Oh, yes.  We have a number of ladies that come in and actually help Joni.  When I was teaching school, I'd leave in the morning, and these same ladies, on a rotating basis, would come in and help Joni get up.  And it's important to be able to thank them.  Basically, we probably wouldn't be able to do the things that we do without their help.

Joni: Once a year we take all of them and their husbands to dinner.  We rent a big room in a restaurant, and we blow the budget.  We save up all year and really blow it on one night of really treating these girls to a fancy-schmancy Ruth's Chris Steakhouse, you know, something real fun and special.

Bob: Now, wait, I'll sign up for a volunteer if that's part of the deal here.

Joni: Well, we just think it's important that these women who help me – and there's about eight or nine different women who help me for 20 different things, whether it's getting up in the morning or shopping, errands, or transportation, or what have you, we think it's important to express gratitude.

Bob: Well, if somebody who has got a disability is going to have that mindset, they're going to have to reflect, as you did – you reflected on Philippians 2:4, which says that we are not to look out merely for our own interests but also for the interests of others.

 You really do have to, as a person with a disability, get beyond the woe-is-me and I-have-a-disability, don't you?

Joni: God expects you to think of others first, and I could be …

Bob: … even if you're a quadriplegic?

Joni: I could be a quadriplegic in bed for three months with pain like I was early last year – two and a half months I was in bed because I had such pain.  And God calls me to think about other people.  Is my husband getting a break?  Is there any way I can help order medical supplies?  Have I lined up somebody to come in and assist with my nighttime routine this weekend?  I've got to be responsible for myself.

 I think that if more of us with disabilities could learn to take as much responsibility for our handicapping condition as we possibly could, whether it was – again, arranging attendant care, writing thank you notes.

 I was talking to a young quadriplegic woman the other day.  I said, "Sweetheart, you can go on your laptop with your mouthstick, and you can order groceries from your local supermarket over the Internet.  Did you know that you could do that?"  That's one way you could be helping your husband, hon, you could order your own groceries.  Isn't that great?"

 And, suddenly, you could see in her eyes hope that she was able to somehow gain a sense of normalcy by – what do you know?  Shopping for groceries over the Internet.  She might have to do it with a mouthstick on a laptop, but she could do it. 

 So take as much responsibility as you possibly can for your own disability.

Dennis: As you've ministered to all these families coming to your family retreats, is there one family that sticks out who came to the retreat and who learned a very, very valuable or important lesson that our listeners might benefit from?

Joni: I'm thinking of Ron and Bev Huckabee.  I was traveling on the road in Phoenix, and I got an e-mail from our home office that a woman named Bev had written, and she was in desperate, dire straits.  Her husband, a pastor, had broken his neck just two years earlier.  He had suffered through a cancer operation and now had urinary tract infections.  His congregation had released him from responsibilities, and now, here he was, a pastor, a quadriplegic, and she said in her e-mail, "My husband just stays in bed.  He tells me to turn the lights out, close the blinds, shut the door.  He doesn't want to have visitors, and I don't know what to do.  I don't know how to reach him.  Can you possibly help?"

 Well, our team tracked down this woman's phone number, and I gave her a call, and I said, "Bev, do you think that your husband Ron, do you think he'd mind talking to me?"  She said, "Well, you can try, but I don't think he's going to say much."

 Well, she tucked the received under his ear, and I tried everything.  I tried Scripture, I prayed, I sang, I tried to talk shop with this fellow quadriplegic, nothing reach him until finally I said, "Ron, did you ever see that movie, 'The Shawshank Redemption?'"  And suddenly I heard a little laugh on the other end of the line – and this is a guy film, this is definitely not a girl film, and …

Dennis: But you had seen it.

Joni: I've seen it, and I wouldn't recommend too many people see it, because it's a raw, very violent movie, but it's quite a powerful movie.  It's about two prisoners who strike up a friendship and Old Red is talking to Andy Duphresne in the prison yard one day, and Andy says to Red, "Red, hope is a good thing, maybe the best of things, and no good thing ever dies.  So you've got to get busy living or you've got to get busy dying." 

 And I said to Ron, "Remember that line?"  And he said, "Yeah, I do."  And I said, "Well, Ron, you and I are perhaps among 10,000 other quadriplegics who, this morning, have to make a choice.  Are we going to get busy living, or are we going to get busy dying?  I don't know about you, Ron, but I want to get busy living, and I invite you to join me.  How about it?"

 And, I tell you what, he perked up.  I asked if maybe he'd like to consider coming to one of our family retreats.  He came to our family retreat in Texas.  He went fishing, he went boating, they did wheelchair square dancing.  It was a blast.

Bob: He got busy living, didn't he?

Joni: He got busy living, and now he's helping other quadriplegic men like himself, and he's exercising his pastoral gifts, and he's serving as a prayer coordinator for Marketplace Ministries in Dallas, Texas, and he's got a job, and he's excited and pumped, and he's getting busy living.

Dennis: And you know what?  There undoubtedly are listeners who may not even be facing a physical handicap or a disability who needed to hear that story.  They need to get busy living.

Joni: Romans, chapter 5, says that "suffering produces perseverance, perseverance produces hope, and hope never, ever disappoints us."

Dennis: Yeah.  You guys are a great model of that, and there's one last thing I want to ask you to do, but first I want to thank you both for being on FamilyLife Today and thank you for your ministry of hope and encouragement to the entire body of Christ, and I pray that couples coming to these family retreats will find hope and encouragement and all kinds of nuggets and just appreciate you guys for your work.

Bob: And let me interrupt you for just a sec, if I can, because I'm just looking at the schedule for this summer, and I see that starting, actually, in April, you've got your first of these family retreats scheduled in Central California, and then you're in Florida and Indiana and Pennsylvania and Texas and the Bay Area and North Carolina, Ohio, Alabama. 

 You really are all over the country with these throughout the summer, and we've got a link on our website at FamilyLife.com to where folks can get more information about the family retreats that you're going to be hosting this summer, and we do hope that whether it's a listener who has someone in his or her family who is disabled, or you know someone in your church, in your neighborhood, someone who could benefit from being at one of these family retreats.  We hope you'll point them in the direction of this information.

 Go to our website, FamilyLife.com.  If you click the red button that says "Go," right in the middle of the screen, it will take you to a place on our site where there's a link to the family retreat schedule for Joni & Friends. 

 There's more information on your website about resources and what's available to help families with disabilities.  But, again, our website is FamilyLife.com.  You click that red "Go" button, find the link there that will take you to the Joni & Friends retreat schedule and other information available from Joni & Friends.

 And I also want to quickly remind our regular listeners about the unique opportunity we have this month to reach out evangelistically to families in the inner city and to families in your neighborhood or in your sphere of influence.

 With Easter coming up, we have decided this year that we would like to make a special effort to get a set of Resurrection Eggs – this is the evangelistic tool that we've been distributing for years.  It features 12 eggs, each one of them containing a different symbol that represents something that happened to Jesus during His last days on earth, and it helps you tell the Easter story as you go from one egg to the next.

 We've been distributing these for years.  This year we've made arrangements with our friends at Here's Life Inner City, which is a ministry of Campus Crusade for Christ.  They are helping us get a set of these Resurrection Eggs into the hands of families and children who live in the inner city who need to hear the Gospel. 

 And what we're asking you to do is help make that possible by making a donation to the ministry of FamilyLife Today.  When you go online or call 1-800-FLTODAY and make a donation, we're going to make sure that a set of these eggs gets sent into the inner city, and we're going to send you a set of Resurrection Eggs so that you can be a part of the distribution network and get these eggs into the hands of relatives or friends, people in your neighborhood or in your workplace.  It's a great way to say Happy Easter and to share the Gospel with these folks.

 So let me encourage you – go online, make a donation online.  As you do, when you fill out your form, you come to a keycode box on the form.  Just type the word "eggs" in there or call 1-800-FLTODAY, that's 1-800-358-6329, make a donation of any amount, and mention that you'd like to be a part of the Resurrection Eggs giveaway that's going on this year, and we'll make sure that a set of Resurrection Eggs gets sent to you and another set goes into the inner city.

 Let me say thanks in advance for your support of this ministry and your partnership with us in this initiative.  Dennis?

Dennis: Ken and Joni, I want to again thank you for being on FamilyLife Today.  The Tadas have had a great ministry here this week on our broadcast, and, Joni, I'm going to give you a chance to practice what you just preached.

 One of the things that we do on FamilyLife Today from time to time is we give the opportunity for a guest on the broadcast to give a tribute to their parents.  In your case, you've mentioned making sure you say thank you to your spouse for how they've cared for you.  So I'd like to turn our listeners, a couple of million listeners into eavesdroppers, to overhear a little verbal tribute by you here on your 25th anniversary to you husband, Ken.

Joni: Well, Ken, I want to thank you for these 25 years that have been the sweetest years.  I am the blessed of women.  You are a husband who not only loves me, and you do it in such practical way – everything from picking up paper towels from the supermarket to putting me in bed at night and getting me up on Sunday mornings ready for church – you even put on my lipstick.

 But not only that, Ken, you love me but you love Jesus Christ, and I see that.  I see it in the way you pray, I see it in the way you read.  Your commitment, your moral purity, your confessions to me when your eyes might wander off onto some things they shouldn't.  You tell me these things.  You're so transparent and vulnerable, and you are so, so sweet.

 You are a pure man at heart, and the Bible says "Blessed are the pure in heart for they shall see God," and I sure see Him in you.

Bob: FamilyLife Today is a production of FamilyLife of Little Rock, Arkansas, a ministry of Campus Crusade for Christ.

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