In this episode, Peter Orr chats with Nick and Dorothy Jones about their life as a family—particularly loving and caring for their son William, who suffers from Duchenne muscular dystrophy. Nick and Dorothy reflect on how their Christian faith sustains and strengthens them as they love and care for William, and they offer some very helpful insights not only about caring for a child with a significant disability, but also about how Christians can support people in a similar situation in our churches.
Links referred to:
- Nick Jones’s blog: Light and Momentary: “Disability and the Gospel (Leviticus 21-23, Hebrews 8)”
- Our October event: Who am I? The search for identity with Rory Shiner (23 October 2024)
- Our podcast listener survey
- Support the work of the Centre
Runtime: 30:10 min.
Transcript
Please note: This transcript has been edited for readability.
Introduction
Peter Orr: In this episode, I chat with Nick and Dorothy Jones about their life as a family, particularly as they love and care for their son William, who suffers from Duchenne muscular dystrophy. Nick and Dorothy reflect on how their Christian faith sustains and strengthens them as they love and care for William.
They have some very helpful insights about caring for a child with a significant disability, but also about how as Christians, we can support those in our churches who are in a similar situation.
[Music]
PO: Welcome to Moore College’s Centre for Christian Living podcast. Today, we’re joined by Nick and Dorothy Jones from Donegal in Ireland. Nick and Dorothy, welcome to the podcast. It’s great to have you on.
Nick, perhaps we could start with you. Could you tell us a little bit about yourself and your family?
Nick Jones: Yeah, hello. Well, you might tell from my accent that I’m not actually Irish. I’m from England originally, but I’ve married an Irish wife, and we moved to Ireland eight years ago. We were ministering in County Cavan for eight years.
I’m an ordained Church of England/Church of Ireland minister. We have two children, Bethany and William. We’ve actually had to leave the Church of Ireland, so we’re now in Donegal and have joined another church here, where we’re being well looked after. I’m working for a mission called One Mission as their charity shop manager. So that’s us here in Donegal.
We’re a bit nearer the sea, which is quite nice. I quite enjoy surfing, so it’s a blessing to be nearer the coast, living here in a beautiful part of the world. It’s a bit cold and wet, but it’s a great place.
PO: Yes, I imagine it’s a little bit colder than many of our listeners who live in Sydney are used to. They probably don’t have to wear a full wetsuit when they go surfing, as I’m guessing you do.
NJ: Yeah. We have to do that here. [Laughter]
Dorothy Jones: Summer wetsuits and winter wetsuits, because it gets even hotter.
PO: Even a summer wetsuit! [Laughter]
William and Duchenne muscular dystrophy
PO: Dorothy, it’s great to have you on the podcast. Could you tell us a little bit more about your family—particularly about William?
DJ: Yeah. So as Nick said, we’ve got two children. Bethany’s 13 and William is 10.
William is great. He’s a lovely wee boy. He’s very chatty. I like to think he got that from his daddy, but I think everyone else would say he got it from me. [Laughter] He loves to play the keyboard and LEGO. He loves drawing and he loves Transformers.
But also sadly, he has something called Duchenne muscular dystrophy, which is a progressive muscle wastage disorder. It’s quite a rare disorder. That means that as he gets older, his muscles get weaker. When he was born, you wouldn’t have known that there was anything wrong with him. He was a bit late walking: he was about two by the time he started walking. As he got a bit older, again, you wouldn’t have known there was anything wrong.
As he got older, though, he started to lose the strength in his legs. Sadly in the last year, he’s had to come off his feet and is now needing a power wheelchair. He can take some weight through his legs, but he needs the help of one person to move from the chair to the bed, or anywhere. So he uses a power wheelchair when he’s out and about. When he’s in the house, he might use a manual wheelchair to push himself around.
Sadly, Duchenne affects not just his legs, but also his arms: as he gets older, he will lose the strength in his arms as well. Our breathing is also controlled by muscles, and our heart is a muscle, so they are also affected. As he gets older, he will lose ability in those. He will start to need ventilation at night, and then he’ll need ventilation during the day. The doctors will keep a close eye on his heart and his lungs, but it will either be a chest infection that his lungs won’t be able to get over, or something to do with his heart that will sadly limit his life.
Duchenne muscular dystrophy is a life-limiting condition. Boys tend to live to 20. Some, very rarely, live into the early 30s. That’s William and that’s what he’s dealing with day-to-day.
PO: Yeah.This particular condition, as I understand it, only affects boys. Is that correct?
DJ: In very, very rare circumstances, it affects girls. It’s a genetic condition generally passed from mother to son. I am a carrier of Duchenne, and my son obviously is suffering it.
My sister was very rare: she was what’s known as a manifesting carrier—a carrier like me, but who also had symptoms as well. Generally that’s quite mild, but with my sister, it was quite severe. She died just over a year ago. She was in a wheelchair full-time and using ventilation full-time.
Everyday life
PO: We’ll talk later about how your Christian faith sustains you in this. But can you give us a picture of what everyday life looks like as you love and care for William?
NJ: Yeah. It starts early in the morning. We still have a baby monitor for him, because he can’t get out of bed himself, so he’s reliant on calling us over the monitor. We’ll normally get called during the night, because he’s slipped down the bed. He’s on a hospital bed that’s at an angle, and he’ll slip down it and need help to get back up it. It’s something we just take for granted—that you can move in your bed. He can’t get back up. So we might be woken up once or twice in the night, having to help move him up the bed and get him back to sleep.
DJ: Or if his duvet falls off. It’s something quite simple that we normally could just—
NJ: And he’s so good about it. He doesn’t complain about it. He’s just very matter-of-fact: “Please help me up the bed.” [Laughter]
So it will start fairly early with that. Then he’ll wake up about 7:30am normally. He’ll get up and have some medicine. He has to have some medicine for his tummy. Then he has his breakfast and then some more medicine. At the moment, he’s got some medication for his feet as well: they’re struggling a bit because of a lack of circulation, because he’s not moving his feet as much.
After that, he’ll get dressed. We help him get dressed and get him to school. Then at about 11 o’clock, one of us goes into the school. One day a week, I have a study day and I’m at home. Otherwise, Dorothy’s at home. We go into the school to get him out of the chair to stretch his legs—to do a little bit of pedalling on a pedal machine so that he’s still using his legs.
Then we pick him up after school, come home, do homework—
DJ: Give him more medicine. [Laughter]
NJ: Yeah, more medicine. And then some playtime. He loves playing: he’d rather not be at school, because it gets in the way of playing. He’d rather be back home playing, drawing and reading. He loves reading, playing the keyboard, playing the guitar, the ukulele, LEGO. He’s got a number of interests. Then before bedtime, he’d have stretches and then bed. Is there anything you’d add to that?
DJ: No. It’s just that sometimes it feels like it’s a constant timetable of medications and various things that need to be done each day. It affects every area of life.
We’ve got a 13-year-old daughter—his sister. She loves her brother. He loves her. They have a lovely relationship. Yet it affects everything. Let’s say you want to go out for a treat—go to a restaurant for a hot chocolate. Well, how do we get there? We need to get into the van. We’ve got a wheelchair-accessible van that he goes into in his wheelchair. Is there a disabled bay anywhere near? Is there a step to get into the restaurant? Can we do that? Then Beth, our daughter, doesn’t get to run around as much, because obviously we’re grounded a bit more.
NJ: You can’t just jump out and go somewhere. I think this year will be the first year, really, that we can’t go to the beach as a family. We have found a beach that can have a wheelchair on it, but he can’t use his wheelchair on that beach. So you need to arrange to go to a beach where there is a wheelchair that you can borrow. Little things become more complicated.
Initial diagnosis
PO: I’ll ask you in a moment how your Christian faith sustains you as you care for William. But I wonder if you could say something about how your Christian faith helped you when you first discovered that William had Duchenne. I imagine that would have been quite a shock.
NJ: It was and it wasn’t. We knew Dorothy was a carrier because of her sister and because of tests that had been done in the family. We knew from a very young age that there was a chance.
We hadn’t planned for either of our children; the Lord graciously gave them to us. Our first was a girl, born two months early with all sorts of trouble. But because she was a girl, the muscular dystrophy wasn’t an issue. We knew that it was very rare for girls.
Then when William came along, we knew that there was a 50 per cent chance, so we were kind of anticipating it, because there was a high possibility that he would have it. But you still hope, and there was still a chronic sadness when we discovered he had the condition.
So we weren’t totally unprepared. But the thing that has helped us incredibly—the thing that if you didn’t know this, I don’t know how you’d get through—is the sovereignty of God: he is sovereign over all things.
Also, that there is a resurrection. All of our lives are so short, whether we live to 20, 80, 90, 100. It’s still so short, compared to eternity. We had that eternal perspective already, but this brought it into a sharper focus. Would you add anything to that?
DJ: Yeah. The sadness, obviously. There was a massive sadness. But I think in some ways, the Lord works all things for the good of those who love him (Rom 8:28).
I had grown up with a sister who had this disability—not as severely, but she had it. Seeing how she lived her life—and that her life was so worth living, for there’s no way anyone can say that it wasn’t—was helpful for us. It helped us see that what actually makes our child’s life worth living is the fact that he’s made in God’s image, not what he can or can’t do, or what he looks like or doesn’t look like. I think being sure of those things as well, as we started on the journey, was really helpful.
PO: Yep.
The sustaining power of Christian faith
PO: Day-to-day though, as you’ve described it, it’s a lot of work. It’s difficult. How does your Christian faith sustain you as you care and love William?
NJ: Taking it one day at a time really helps. When the Apostle Paul had that thorn in his flesh and he pleaded with the Lord to take it away, he was told, “My grace is sufficient for you, for my power is made perfect in weakness” (2 Cor 12:9). I have that sense that God’s grace is sufficient for each day.
The problem is when we start worrying about tomorrow: if we start thinking about the future, we can start panicking and getting anxious. But when we take it one day at a time, we know he’s going to give us the grace that’s sufficient for today and we don’t need to worry about tomorrow. He’ll give us the grace that’s sufficient for today. His power is made perfect and weakness.
William teaches us so much. He’s so strong. In one of the schools he’s been in, he’s the one who stood up to the school bully in his powered wheelchair. [Laughter] He’s the one who stood up to them and told them to stop it—that it wasn’t right. So I think that it’s that sense of God’s sufficient grace for each day.
DJ: I think there’s two things: there’s that sadness that we’ve spoken about. Also, I think as Christians, we know we’re living in a broken world, and there’s a realism in that. We can lament that, and we see in the Psalms so many laments about how difficult and how hard this life is. We lament that, yet we don’t live without hope.
There’s also that wonderful hope—the hope of the resurrection. If William is trusting in Jesus, he has a wonderful hope of a body that isn’t going to let him down. My sister knew the Lord. After she died, William said to us, “Aunty Elizabeth and I are going to climb Mount Everest in the new creation.” Isn’t that wonderful!
Recently, William came home from school. They’d been doing a mindfulness week or a mental health wellbeing week or something. He came home and said, “Mummy, the teacher said to me that if you’ve got any problems, just come and talk to her, or just come and talk to your parents, and we can sort them out and it’ll all be fine. Well, what happens if your problem is that you’re frustrated with being in a wheelchair for the rest of your life? What’s she going to say then? She’s not going to fix that, is she?” [Laughter]
I was like, “Okay, William. Yeah, that’s a fair point. So what would you say?” [Laughter]
He said, “Well, Mummy, see, it’s like this: it’s what we were talking about in church on Sunday. It’s about the resurrection. If we haven’t got the resurrection, we haven’t got that wonderful hope. I’ve got a wonderful hope, because Jesus died for me, and I’m going to be with him forever. I’m going to run and jump when I go to see him.”
You’re talking about the weak shaming the wise (1 Cor 1:27-29). I like to think I’m wise, but my 10-year-old can teach me a whole pile. [Laughter]
PO: Yeah.
William’s faith
PO: It sounds like William has a very clear and strong Christian faith. Can you say a little bit about how that’s developed over the years, and how that helps him?
NJ: He’s grown up hearing about Jesus from a very young age. We’ve praying for him from before he was born, and we read the Bible to him from a young age. We’ve done family worship, we’ve tried to answer his questions and we’ve brought him to church with us. He’s grown up hearing about Jesus, and I think if you asked him, he probably wouldn’t remember a day that he didn’t know the Lord Jesus in his own life. So it’s been a gradual growing, but he really seems to listen to God’s word and think about it, and he’s able to express that in a way that is beyond his years. He really has a mature faith for someone of 10. It’s miraculous and we praise God, because it makes such a difference that he is mainly joyful and content, despite all the challenges he faces. I mean, he’s often more joyful than I am! I just praise God for that, because it makes life a lot easier.
We’re at a church where we sing the Psalms. On Sunday, the pastor was talking about, “What can miserable Christians sing?” We were looking at Psalm 6: here’s a psalm we can sing that’s about God seeing our tears. William picked up on that. That’s helpful, isn’t it? There are times when we’ll be sad, we can express that to God and sing that to God, and he gives us the words to sing.
DJ: Seeing William’s strong faith is really helpful when it comes to dealing with this. Jeremy Marshall said he couldn’t get through what he got through without Jesus. I think we would all say the same: we couldn’t do this without Jesus. He makes such a difference.
[Music]
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October event
PO: Our culture is obsessed with identity: we’re often told, “You do you” and encouraged to live according to our “true and authentic self”, expressing publicly how we feel about ourselves internally.
However, the very idea of personal identity is inherently slippery. It encompasses things like ethnicity, class, gender, sexuality, religion, belief, educational background, profession and personality, but it’s not fixed: our identity can change through time, circumstance and even self-invention.
How as Christians should we regard identity? God created us as unique individuals; how does our creatureliness affect who we are? Furthermore, as sinners who have been redeemed and sanctified by the Lord Jesus and adopted into the family of God, how does Christ’s work change the way we view ourselves? How does the encouragement to “find your identity in Christ” actually play out in the complexities of competing sources of identity?
Join us for our next and final event in our series on “Culture creep” on Wednesday 23 October, when Rory Shiner, Senior Pastor of Providence City Church in Perth, will show us how losing ourselves for the sake of the kingdom will help us find ourselves once and for all (Matt 10:39). Register and find out more on our website: ccl.moore.edu.au.
Podcast survey
Karen Beilharz: Podcast producer Karen Beilharz here. For the first time ever, we are conducting a listener survey to help us get to know you and how you interact with the CCL podcast.
We’d love it if you could fill it in. There are only 10 questions, and they’re on stuff like how long you’ve been listening to the podcast; whether you listen on your phone, your tablet or your computer, or if you just read the transcripts; and what you most like and least like about the podcast.
It should take around 5-10 minutes to complete, and your responses will really help us as we consider how to improve the podcast, moving forward.
You can find the survey link in the episode description or the show notes, or visit ccl.moore.edu.au/podcastsurvey/.
Thank you again for your support!
PO: Now let’s get back to our program.
Help from the church
PO: As well as the resources, the Bible, the Lord strengthening you, you have a Christian family. Do you want to speak about how the church has helped you? I know that in the past, Christians have not always been helpful. Do you want to speak a little bit about that as well?
NJ: Yes. I think Christians often struggle to talk about brokenness. We want everything to be all right. We want to be positive. But it’s a broken world. There’s so much brokenness in the Bible, and there’s so much that points us to the new creation and to Jesus being the solution.
It’s okay to be sad, you know. It’s okay to express that. It doesn’t mean you’re not a Christian if you’re feeling sad. I think sometimes Christians can be a bit too quick to try and jolly you along—think of the positives and, “Oh, well, at least it’s not that.” Yeah, but it does still hurt, and it’s not wrong to express that hurt.
Other unhelpful things, I suppose, are people promising healing and suggesting that if you have enough faith, God will heal. I went through all this when my mum died: I was only 14, and there were Christians promising her healing from her cancer, and Christians saying really unhelpful things and making promises that God doesn’t make. That left me absolutely shattered when she died, feeling like God had let me down, when God had actually never promised the healing that these people were promising.
I’ve encountered that from Christians who say that maybe there’s something you need to confess. That’s just cruel, because it puts the burden on me and makes me feel like I must have done something to cause this. [Laughter] Have we not enough to deal with without someone trying to blame us for doing it? The fact that Jesus paid for all my sins is such a relief. I was able to stand up to the man and challenge him, but it hurts when people say things like that. They might mean well, but it can hurt.
PO: What are some positive stories, though, in terms of being cared for by other Christians and church communities?
NJ: We’ve had people offering us places to stay. Going on holiday becomes harder when you need things like a downstairs bedroom, a ramp to the door and a wet room. Christians offering to help in those practical ways has been fantastic. People getting alongside us and praying, sending messages of encouragement, having the church family love and care for you.
This week, William had a hospital appointment, and Dorothy took him to that. Someone from church offered to pick up Bethany from school, because I was at work. Just having that when your physical family isn’t nearby and can’t help in those ways—having your church family stepping in and doing those sorts of things—has been really helpful.
DJ: It’s difficult for us to go and visit people, and another family came and visited us and stayed with us, which was lovely. It was brilliant. It meant that William could interact fully, because everything here is set up, and he could hang out with their kids. It was great!
The church and disabilities
PO: Thinking about church more broadly, how can churches include people with disabilities? What are some of the things that would be helpful for churches to think about?
DJ: “Inclusion” is a funny word, isn’t it? What does “inclusion” mean? I suppose it’s facilitating each person in the church to play their full part in the body of Christ. Even if they feel like they’re the little toe and that they have no worth, that’s not true. Every part of the body needs to be there. We need each part of the body (1 Cor 12:12-31). As a loving church family, we need to facilitate everyone to play their part. It’s so much more than just saying, “Oh, we’ve got a ramp up to the front door. Now you’re in, that’s it. Good job!” There’s a lot more to it than that! It’s facilitating folk to serve.
One of the ways in which I think our son serves in church is just being enthusiastic. [Laughter] Whenever there’s a question for the children, William’s hand is up. He wants to answer the question. That encourages other children as well.
But it can be hard if Sunday school is upstairs, or in a room where William’s wheelchair can’t fit into, or if there’s games being played that he can’t join in. I think it’s a matter of people being aware of people with not just physical, but lots of different additional needs. Sometimes I think there can be a bit of an emphasis on the more sensory additional needs, and sometimes we forget about the physical additional needs. But we need to remember all of the additional needs.
So when you do something like a Sunday school, is it accessible? Can they get into the room? When you have games, maybe have a think about whether there is a particular role that the child who struggles with whatever it is they struggle with can play. Can they play a particular role in a game so that everyone can join in and so that they’re not kind of stuck on the side?
Also thinking about inclusion, there’s the church family as well: that’s kind of the public worship on a Sunday—Sunday school. Just including folk with disabilities within the church family. Maybe your house is not accessible. Maybe you’ve got ten steps up to your front door. [Laughter] Well, maybe you could come to us, then, and bring the dinner to us if you want to have us around for a meal, but can’t. Come to us or do things like that. Make sure that those who are struggling in that way can participate, because they’ve got so much to offer and we need folk of all types in the body of Christ.
Encouragement from Leviticus
PO: Yeah, absolutely. Nick, I wonder if we could finish with speaking about Leviticus. You have a blog: lightandmomentary.org. In a recent post, you wrote about the encouragement you drew from Leviticus 21. Can you tell us how that chapter encouraged you?
NJ: Yes. My blog is just a blog going through a Bible reading plan. There happened to be a reading on Leviticus 21 that day, which I suppose many people might dodge. It’s a bit of a strange passage. At a first glance, it might sound like disabled people are being left out. But actually, that was the criteria for the priesthood. I suppose it’s pointing us to our perfect high priest, the Lord Jesus, so there could be no physical defect there.
But the disabled were still entitled to eat the bread, which was a sign of them being welcomed into God’s presence. Whatever disability they might have had—whether they were lame, mutilated or injured—there was a way for them to be included. God cared for them.
Then clearly, through the Lord Jesus, as we see him as our perfect high priest, we look at him and the way he treated disabled people. He went out of his way to spend time with disabled people. Yes, he healed them. But that was a foretaste of the kingdom that is to come. As he walked around doing these miracles, he was giving us that wonderful foretaste of how good his kingdom will be when there will be no disability—when there will be no suffering. It’s a little snapshot of that resurrection kingdom.
So yes, I was just encouraged by that—that, actually, there is provision made, even there in the Old Testament. You see it with David looking after one of—I can’t even remember the name now; Mephibosheth or something?
PO: Mephibosheth, son of Jaonathan son of Saul. Yes.
NJ: Provision is made, isn’t there. There’s special care given, which is right. The Apostle Paul talks about that as well in Corinthians—giving special care to those parts (1 Cor 12:23).
Feel free to have a look at the blog and give me feedback, if you like. It’s not entirely about disability; it’s just walking through the Bible. I’ve called it “Light and Momentary” after Paul’s description of his trials, which to us, sound very severe. He was able to call them “light and momentary” compared to the that eternal weight of glory that outweighs them all (2 Cor 4:17).
PO: Well, that’s a wonderful perspective. Thank you, Dorothy and Nick, for your time, and for helping us to see how your Christian faith sustains you as you care for and love your wonderful son, who is made in God’s image, and to be reminded of the hope we have—that we will enjoy eternity together. I look forward to seeing William run and jump in the new creation. Thank you, guys.
NJ: Thank you.
DJ: Thank you.
The difference Christian parenting makes
PO: After we finished recording, Dorothy made a very insightful comment about the difference she has noticed between Christians and those who don’t believe in Jesus, in terms of how they love and care for their disabled children. Her insight was so helpful that I asked her to record it again for me. That’s why the audio on this next question is a little bit different.
NJ: Hi Peter! I’ll ask Dorothy the question and then she’ll answer it. Dorothy, can you speak about the differences you’ve seen in how others without a Christian faith care for a child with a disability?
DJ: Particularly initially after a diagnosis, families can be very keen to get a cure—even to raise lots of money for scientific research to find a cure for Duchenne. Don’t get me wrong: we would absolutely love a cure. But I think you can become so consumed with raising money and doing various different fundraising activities to raise money to get a cure that you can miss out on spending time with your child.
Or there can be the idea of “We need to cram every experience under the sun into a very short period of time”—like, we need to go to Disneyland, we need to do this or we need to do that, and maybe we need to fundraise to do these things as well. To a certain extent, it’s right and good to enjoy time together. But I think that happens when you think that this life is all there is.
As Christians, when we know we’ve got a wonderful hope—a wonderful resurrection hope to look forward to—it takes the pressure off, in many ways. We can enjoy what we have here as normally and as much as we can, and we can enjoy William. We know that there is a wonderful hope ahead—a time when he will have a cure, when every experience under the sun will be there. Again, I think the resurrection makes a massive difference.
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Conclusion
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PO: To benefit from more resources from the Centre for Christian Living, please visit ccl.moore.edu.au, where you’ll find a host of resources, including past podcast episodes, videos from our live events and articles published through the Centre. We’d love for you to subscribe to our podcast and for you to leave us a review so more people can discover our resources.
On our website, we also have an opportunity for you to make a tax deductible donation to support the ongoing work of the Centre.
We always benefit from receiving questions and feedback from our listeners, so if you’d like to get in touch, you can email us at ccl@moore.edu.au.
As always, I would like to thank Moore College for its support of the Centre for Christian Living, and to thank to my assistant, Karen Beilharz, for her work in editing and transcribing the episodes. The music for our podcast was generously provided by James West.
[Music]
Scripture quotations are from The ESV® Bible (The Holy Bible, English Standard Version®), copyright © 2001 by Crossway, a publishing ministry of Good News Publishers. Used by permission. All rights reserved.
Photo by Hans Moerman on Unsplash
