October 10, 2024 • 30 mins
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.
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(00:00):
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,
(00:08):
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.
(00:30):
Welcome to Moore College's Centre for Christian Living Podcast. Today we're joined by Nick and Dorothy Jones from Donegal in Ireland.
(00:53):
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?
Yep. Hello. Well, you might tell from my accent. 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.
(01:19):
We have two children, Bethany and William, and 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.
And 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. A bit cold and wet, but it's a great place.
(01:45):
Yes. I imagine a little bit colder than many of our listeners who live in Sydney. We probably don't have to wear a full wetsuit when they go surfing, as I'm guessing you do.
Yes. Yeah. We have to do that here.
Summer wetsuits and winter wetsuits because it gets even water.
So even a summer wetsuit. Yes. Dorothy, it's great to have you on the podcast. Could you tell us a little bit more about your family, particularly about William?
(02:09):
Yeah. So as I said, we've got two children. Bethany is 13 and William is 10. So 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 is saying he got it from me.
And he loves to play the keyboard and Lego and he loves drawing and he loves transformers.
(02:32):
But also sadly, he has something called Duchenne muscular dystrophy, which is a progressive muscle wastage disorder.
It's quite a rare disorder. And that means that as he gets older, his muscles get weaker.
When he was born, you would know there was anything wrong with him. Now, he was a bit late walking. He was about two by the time he started walking.
(02:55):
But as he got a bit older, you again would know there was anything wrong. But as he got older, he started to lose the strength in his legs.
And sadly about, I suppose in the last year, he's kind of come off his feet and is now needing a power wheelchair.
So he can take some weight through his legs, but he needs help of one person to move from the chair to the bed or anywhere.
(03:20):
So he uses a power wheelchair when he's out and about. And when he's in the house, he might use a manual wheelchair to push himself around.
But sadly, it affects not just his legs, but also his arms. So as he gets older, he will also lose the strength in his arms as well.
And our breathing is controlled by muscles and our heart is a muscle. So they also are affected.
(03:44):
And as he gets older, he will lose ability in those he will start to need ventilation at night.
And then we'll need ventilation during the day. And the doctors will keep close eye on his heart and his lungs.
But sadly, it will either be a chest infection that his lungs will be able to get over or something to do with his heart that will sadly limit his life.
(04:10):
It is a life limiting condition. And boys tend to live to 20 some very rarely into the early 30s.
That's William and that's what he's dealing with day to day.
Yeah. Yeah. And this particular condition, as I understand it, only affects boys. Is that correct?
It's very, very rare circumstances. It affects girls. It's a genetic condition.
(04:33):
Generally passed from mother to son. So I am a carrier of Duchenne and my son obviously is suffering it.
But my sister was very rare. She was what's known as a manifesting carrier.
So a carrier like me, but who also had symptoms as well. But generally that's quite mild.
But my sister, it was quite severe. And she died just over a year ago.
(04:58):
She would have been in a real full time and using ventilation full time.
We'll talk about how your Prussian faith sustains you in this.
But can you give us a picture of what everyday life looks like as you live and care for William?
Yeah. I mean, it starts early in the morning as in, well, normally 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.
(05:23):
And we'll normally get called during the night to say he's slipped down the bed.
He's on a hospital bed that's at an angle and he'll slip down it and he'll need help to get
back up it. You know, something we just hope for granted that you can move in the bed.
He can't get back up. And so you might be woken up once or twice in the night with
having to help move him up the bed and get him back to sleep.
(05:45):
Or if his duvet falls off, you know, it's something quite simple that we normally could just...
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. And so it'll start fairly early with that.
And then he'll wake up about 7.30 normally and get up, have some medicine. He has to have some medicine
for his tummy. And then he has his breakfast and then some more medicine. And the moment he's got
(06:10):
some medication for his feet as well, that they're struggling a bit because of a lack of circulation
because he's not moving his feet as much. So after that, he gets dressed. We'd help him get
dressed and get him to school. And then at about 11 o'clock, one of us would go into the school.
So one day a week, I have a study day and I'm at home, otherwise Dorothy's at home.
(06:32):
And we go in to just get him out of the chair to stretch his legs,
to do a little bit of pebbling on a sort of pebble machine so that he's still using his legs.
And then we pick him up after school, come home, do homework.
And more medicine.
More medicine, yeah. And then some playtime. Really, he loves playing.
He'd rather not be at school because it gets in the way of playing.
(06:54):
But he'd be then back home playing drawing, reading. He loves reading, playing the keyboard,
playing the guitar, ukulele, Lego. So he's sort of a number of interests. And then these sort of
before bedtime, he'd have stretches and then into bed.
There anything you'd add to that?
(07:14):
No, it's just sometimes it's like it's a constant timetable of medications and various different
things that need to be done each day. It affects every area of life really. Like 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. Just wanted quite a treat, let's say.
Let's say you want to go to a restaurant for a hot chocolate. Well, how do we get there?
(07:38):
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?
And then Beth, our daughter doesn't get to run around as much because obviously we're
grounded a bit more. So yeah, I can't just jump out and go somewhere.
(07:59):
I think this year will be the first year really we can't go to the beach as a family.
We have found a beach that has a wheelchair on it, but he can't use his wheelchair on the beach.
So you need to arrange going to a beach where there is a wheelchair that you can borrow and go
and use that. So just little things become more complicated. Yeah. I'll ask you in a moment how
(08:21):
your Christian faith distains you ongoing as you care for William. I wonder if you could say
something about how your Christian faith helped you when you first discovered that William had
Duchain because I imagine that would have been quite a shock. It wasn't. It wasn't. We knew Dorothy
was a carrier because of her sister and because of tests that had done in the family. So we knew
(08:43):
from a very young age that there was a chance. We hadn't planned either of our children. The Lord
graciously gave them to us. And the first was a girl born two months early with all sorts of
trouble. But because she was a girl, the muscular distra, he wasn't an issue. We knew that was very
rare for the girls. And then when William came along, we knew there was a 50% chance. So we were
(09:06):
kind of anticipating that it was a high possibility that he would have. But yet still you still hope
and there was still a chronic sadness when we discovered that he had the condition. So we weren't
totally unprepared. But I think that the thing that has helped us incredibly, that I don't know
how you'd get through if you didn't know this, but the sovereignty of God, that he is sovereign over
(09:30):
all things and that there is a resurrection because all of our lives are so short, whether we live to
20, 80, 90, 100, it's still so short, isn't it, compared to eternity? Having that eternal
perspective already, but just this brings it into a sharper focus. Would you add anything to that?
(09:51):
Yeah, I think the sadness, obviously there's a massive sadness. But I think in some ways,
Lord works all things for the good of those who love him. And I had grown up with a sister who
had this disability, not as severely, but she had it. And to see how she lived her life, her life
was so worth living. There's no way anyone can say that it wasn't, was helpful for us to see that
(10:16):
actually what 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, what he looks like or what he doesn't look like. And I think being sure
of those things as well as we started on the journey was really helpful. Yeah, day to day,
though, as you described it, it's a lot of work and it's difficult. So how does your Christian
(10:40):
faith sustain you as you care and love William? I think taking it one day at a time really helps.
And so when the Apostle Paul had that thorn in his flesh, and he pleaded with the Lord to take it away,
that he was told, my grace is sufficient for you. My power is made perfect in weakness.
(11:00):
Just that sense of God's grace is sufficient for each day. The problem is when we start worrying
about tomorrow, and 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. And his power made perfect in weakness. I mean, William teaches us so much and is so strong
(11:29):
in one school he's been in. He's the one that stood up to the school bully in his powered wheelchair.
He's the one that stood up to them and told them to stop it, but it wasn't right.
So I think really that sense of God's sufficient grace for each day.
And I think there's two things there. There's that sadness that we've spoken about. And I think,
(11:50):
as Christians, we know that this is a broken world that we're living in. And there is a
realism in that. And we can lament that. And we see in the Psalms so many laments about
how difficult this life and how hard it is. And we lament that yet we don't live without hope.
There's also that wonderful hope, that hope of the resurrection. And if William is trusting in
(12:15):
Jesus, he has a wonderful hope of a body that isn't going to let him down. And after my sister
died, she also wonderfully knew the Lord. And after my sister died, William said to us, well,
Angie, Elizabeth and I are going to climb down to Everest in the new creation.
You know, isn't that wonderful? And recently William came home from school and they've been doing
(12:39):
a mindfulness week or a mental health well-being week or something, one of these things. And he
came home when he said, mommy, 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
(12:59):
rest of your life? What's she going to say then? She's not going to fix that, is she?
I was like, okay, William, yeah, well, that's a pair of points. I said, well, mommy, 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
(13:22):
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. I like to think I'm wise, but
my 10-year-old competes with me a whole pile. Yeah. So 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
(13:44):
years and how that helps him? He's grown up hearing about Jesus from a very young age. So we've been
keen to pray from him from before he was born and we've read the Bible to him from a young age.
We've had family worship and I suppose I saw it answer his questions, brought him to church with us.
So he's grown up hearing about Jesus. And I think if you asked him, he probably wouldn't
(14:09):
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 be able to express it in a way
that is beyond his years. He really has a mature faith for someone of 10. I mean, it's miraculous
(14:31):
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 with Psalms and
on Sunday the pastor was talking about how actually what can miserable Christians sing.
(14:55):
We were looking at Psalm 6 and here's a Psalm we can sing that God sees our tears and William
picked up on that. So that's helpful, isn't it? That actually there are times when we'll be sad
and we can express that to God and sing that to God and he gives us the words to sing.
Seeing William's strong faith is really helpful when it comes to dealing with this. And as
(15:17):
the Jeremy Marshall said, he couldn't get through what he got through without Jesus.
I think we are the same. We couldn't do this without Jesus. He makes such a difference.
(15:51):
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
(16:14):
ethnicity, class, gender, sexuality, religion, belief, educational background, profession and
personality, but it's not fixed. Our identity can change through time and circumstance and even
self-invention. So 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
(16:39):
and sanctified by the Lord Jesus and adopted into the family of God, how does Christ's work
change the way that 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, 23rd of October. When Rory Shiner,
(17:01):
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. Register and find out more on our website
ccl.moore.edu.au. Podcast producer Karen Beilharz here. For the first time ever,
we are conducting a listener survey to help us to get to know you and how you interact with the
(17:25):
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really help us as we consider how to improve the podcast moving forward. You can find the survey
(17:50):
link in the episode description or the show notes or visit ccl.moore.edu.au/podcastsurvey.
That's one word. ccl.moore.edu.au/podcastsurvey. Thank you again
for your support. And now let's get back to our program. As well as the resources, the Bible,
(18:12):
the Lord's strengthening you, you have a Christian family. Do you want to speak about how the
church has helped you? And I know that in the past, Christians have not always been helpful.
Do you want to speak a little bit about that as well? Yes, I think Christians often struggle to
talk about brokenness. We want everything to be all right and we want to be positive.
But it is a broken world, isn't it? And there's so much brokenness in the Bible and there's so
(18:38):
much that points us to the new creation and to Jesus being the solution that it's okay to be
sad, you know, and to express that. And it doesn't mean you're not a Christian if you're feeling
sad. And I think sometimes Christians can be a bit too quick to try and just jolly you along and
think of the positives and well, at least it's not that. Yeah, but it does still hurt and it's not
(19:03):
wrong to express that hurt. Other unhelpful things, I suppose, are people trying to promise healing
and suggest that if you have enough faith that God will heal. And I went through all this when my
mum died. I was only 14 and there were Christians promising her healing. She had cancer and
Christians saying really unhelpful things and making promises that God doesn't make,
(19:27):
which left me absolutely shattered when she died, feeling that God had let me down when God actually
had never promised the healing that these people were promising. And I've encountered that from
Christians saying maybe there's something you need to confess. And that is just so cruel to say
because it puts the burden on me and makes me feel like I must have done something to cause this.
(19:51):
And have we not enough to deal with without someone trying to blame you for doing it? And
in fact Jesus paid for all my sins is such a relief. And I was able to stand up to the man and
challenge him, but it hurts when people say things like that and they might be meaning well,
but it can hurt. Positive stories though in terms of being cared for by other Christians and church
(20:16):
communities. 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, a wet room and just Christians offering
to help in those practical ways has been fantastic, hasn't it? People getting alongside and praying,
(20:36):
sending messages of encouragement, having the church family that loves and cares for you.
This week William had a hospital appointment and Dorothy took him to that and 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 to have the church family stepping in and
(20:59):
doing those sorts of things. It's been really cool. And we did have a family, well, a family we still
know and see, but it's difficult for us maybe to go and visit people and they came and visited us
and stayed with us, which was lovely, which is brilliant. And it means that William could interact
fully because everything here is set up and he could hang out with their kids and it was great.
(21:21):
And 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? Inclusion is a funny
kind of word, isn't it? What does inclusion mean, I suppose, is 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 have
(21:44):
no worth. That's not true. Every part of the body needs to be there. We need each part of the body.
And there's a loving church family. We need to facilitate everyone to play that part. And it's
so much more than just saying, oh, we've got to ramp up to the front door. Now you're in, that's it.
Good job. And there's a lot more to it than that, isn't there? Is it facilitating
(22:05):
folks to serve one of the ways in which I think our son serves in churches, just being enthusiastic.
Whenever there's a question for the children, where William's hand is off, he wants to answer
the question. And that encourages other children as well, doesn't it? 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
(22:28):
being played that they can't join in with. So I think being aware of people with not just physical,
but lots of different additional needs. But 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 remember all of the additional needs. So when you do something like a Sunday school,
(22:50):
is it accessible? Can they get into the room? When you have games, maybe have a think of,
is there a particular role that the child who maybe struggles with whatever it is they struggle
with, can they play a particular role in a game so that everyone can join in and them not be kind
of stuck on the side. And just church family as well is inclusion. That's kind of the public
(23:13):
worship on a Sunday, Sunday school. But just including folk with disabilities within the
church family, maybe your house is not accessible. Maybe you've got 10 steps up to your front door.
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. So things like that, making sure that those who are struggling
(23:35):
in that way can participate because they have so much to offer and we need folk of all types
in the body of Christ. Yeah, absolutely. Nick, I wonder if we could finish speaking about Leviticus.
You have a blog, lightandmomentary.org. This is what I want to check that out,
lightandmomentary.org. And in a recent post, you wrote about the encouragement that you drew from
(23:59):
Leviticus 21. Can you tell us how that chapter encouraged you? Yes, it's just a blog going
through a Bible reading plan. And it happened to be a reading on Leviticus 21 that day, which I
suppose many people might dodge. It might be a bit of a strange passage, but it's actually strange.
At a first glance, it might sound like disabled people are being left out. But actually, there
(24:23):
was a criteria for the priesthood, I suppose, pointing us to our perfect High Priest, the Lord
Jesus, so there could be no physical defect there. But they were entitled to eat the bread,
which was a sign of them being welcomed into God's presence, those with whatever the disability
might have been, whether they were lame or mutilated, injured. There was a way for them to
(24:48):
be included that God cared for them. And then clearly through the Lord Jesus, as we see him as
our perfect High Priest, we looked at him and the way he treated disabled people. He went out of his
way to spend time with disabled people. And 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
(25:12):
foretaste of how good his kingdom will be when there will be no disability, when there will be
no suffering, 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 Testament. And you see it with David looking
after one of, I can't even remember the name now, Mephibosheth or something. There is Mephibosheth
(25:35):
Salson. Yes, provision made, isn't there? There's special care given, which is right. And the apostle
Paul talks about that as well in Corinthians with giving special care to those parts. So yes, 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. But I've called it “Light and Momentary” after Paul's
(26:00):
description of his trials, which to us sound very severe. He was able to call them “Light and
Momentary” compared to that eternal weight of glory that outweighs them all. So that was the
little encouragement I took there. That's a wonderful perspective. I thank you Dorothy and Nick
for your time and just helping us to see how your Christian faith sustains you as you care for and
(26:25):
love your wonderful Son made in God's image and the hope that we have will enjoy eternity together.
And I look forward to seeing William run and jump in the new creation. And thank you guys.
Thank you. 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
(26:49):
and care for their disabled children. Her insight was so helpful that I asked her to record it again
for me. And that's why the audio on this next question is just a little bit different.
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?
(27:10):
I suppose particularly initially after a diagnosis, families can be very keen to get a cure, to maybe
raise lots of money for scientific research to find a cure for DeShane. And don't get me wrong,
we would absolutely love a cure. But I think you can become so consumed with raising money and doing
(27:32):
various different fundraising activities to raise money to get a cure that maybe you can
miss out on spending time with your child to a certain extent. Or there can be the idea of maybe
we need to cram every experience under the sun into a very short period of time. Like we need to
go to Disneyland and we need to do this or we need to do that and maybe we need to fundraise to do
(27:54):
these things as well. And to a certain extent that's right and good to enjoy time together. But
I think that can all happen when you think that this life is all there is. And 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
(28:19):
as we can and enjoy William and know that there is a wonderful hope ahead where he will have a cure
where every experience under the sun will be there. So I think the resurrection again makes a massive difference.
(28:50):
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(29:14):
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thank Moore College for its support of the Centre for Christian Living and to thank my assistant,
(29:37):
Karen Beilharz, for her work in editing and transcribing the episodes. The music for our
podcast was generously provided by James West.
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,
(00:08):
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.
(00:30):
Welcome to Moore College's Centre for Christian Living Podcast. Today we're joined by Nick and Dorothy Jones from Donegal in Ireland.
(00:53):
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?
Yep. Hello. Well, you might tell from my accent. 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.
(01:19):
We have two children, Bethany and William, and 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.
And 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. A bit cold and wet, but it's a great place.
(01:45):
Yes. I imagine a little bit colder than many of our listeners who live in Sydney. We probably don't have to wear a full wetsuit when they go surfing, as I'm guessing you do.
Yes. Yeah. We have to do that here.
Summer wetsuits and winter wetsuits because it gets even water.
So even a summer wetsuit. Yes. Dorothy, it's great to have you on the podcast. Could you tell us a little bit more about your family, particularly about William?
(02:09):
Yeah. So as I said, we've got two children. Bethany is 13 and William is 10. So 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 is saying he got it from me.
And he loves to play the keyboard and Lego and he loves drawing and he loves transformers.
(02:32):
But also sadly, he has something called Duchenne muscular dystrophy, which is a progressive muscle wastage disorder.
It's quite a rare disorder. And that means that as he gets older, his muscles get weaker.
When he was born, you would know there was anything wrong with him. Now, he was a bit late walking. He was about two by the time he started walking.
(02:55):
But as he got a bit older, you again would know there was anything wrong. But as he got older, he started to lose the strength in his legs.
And sadly about, I suppose in the last year, he's kind of come off his feet and is now needing a power wheelchair.
So he can take some weight through his legs, but he needs help of one person to move from the chair to the bed or anywhere.
(03:20):
So he uses a power wheelchair when he's out and about. And when he's in the house, he might use a manual wheelchair to push himself around.
But sadly, it affects not just his legs, but also his arms. So as he gets older, he will also lose the strength in his arms as well.
And our breathing is controlled by muscles and our heart is a muscle. So they also are affected.
(03:44):
And as he gets older, he will lose ability in those he will start to need ventilation at night.
And then we'll need ventilation during the day. And the doctors will keep close eye on his heart and his lungs.
But sadly, it will either be a chest infection that his lungs will be able to get over or something to do with his heart that will sadly limit his life.
(04:10):
It is a life limiting condition. And boys tend to live to 20 some very rarely into the early 30s.
That's William and that's what he's dealing with day to day.
Yeah. Yeah. And this particular condition, as I understand it, only affects boys. Is that correct?
It's very, very rare circumstances. It affects girls. It's a genetic condition.
(04:33):
Generally passed from mother to son. So I am a carrier of Duchenne and my son obviously is suffering it.
But my sister was very rare. She was what's known as a manifesting carrier.
So a carrier like me, but who also had symptoms as well. But generally that's quite mild.
But my sister, it was quite severe. And she died just over a year ago.
(04:58):
She would have been in a real full time and using ventilation full time.
We'll talk about how your Prussian faith sustains you in this.
But can you give us a picture of what everyday life looks like as you live and care for William?
Yeah. I mean, it starts early in the morning as in, well, normally 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.
(05:23):
And we'll normally get called during the night to say he's slipped down the bed.
He's on a hospital bed that's at an angle and he'll slip down it and he'll need help to get
back up it. You know, something we just hope for granted that you can move in the bed.
He can't get back up. And so you might be woken up once or twice in the night with
having to help move him up the bed and get him back to sleep.
(05:45):
Or if his duvet falls off, you know, it's something quite simple that we normally could just...
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. And so it'll start fairly early with that.
And then he'll wake up about 7.30 normally and get up, have some medicine. He has to have some medicine
for his tummy. And then he has his breakfast and then some more medicine. And the moment he's got
(06:10):
some medication for his feet as well, that they're struggling a bit because of a lack of circulation
because he's not moving his feet as much. So after that, he gets dressed. We'd help him get
dressed and get him to school. And then at about 11 o'clock, one of us would go into the school.
So one day a week, I have a study day and I'm at home, otherwise Dorothy's at home.
(06:32):
And we go in to just get him out of the chair to stretch his legs,
to do a little bit of pebbling on a sort of pebble machine so that he's still using his legs.
And then we pick him up after school, come home, do homework.
And more medicine.
More medicine, yeah. And then some playtime. Really, he loves playing.
He'd rather not be at school because it gets in the way of playing.
(06:54):
But he'd be then back home playing drawing, reading. He loves reading, playing the keyboard,
playing the guitar, ukulele, Lego. So he's sort of a number of interests. And then these sort of
before bedtime, he'd have stretches and then into bed.
There anything you'd add to that?
(07:14):
No, it's just sometimes it's like it's a constant timetable of medications and various different
things that need to be done each day. It affects every area of life really. Like 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. Just wanted quite a treat, let's say.
Let's say you want to go to a restaurant for a hot chocolate. Well, how do we get there?
(07:38):
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?
And then Beth, our daughter doesn't get to run around as much because obviously we're
grounded a bit more. So yeah, I can't just jump out and go somewhere.
(07:59):
I think this year will be the first year really we can't go to the beach as a family.
We have found a beach that has a wheelchair on it, but he can't use his wheelchair on the beach.
So you need to arrange going to a beach where there is a wheelchair that you can borrow and go
and use that. So just little things become more complicated. Yeah. I'll ask you in a moment how
(08:21):
your Christian faith distains you ongoing as you care for William. I wonder if you could say
something about how your Christian faith helped you when you first discovered that William had
Duchain because I imagine that would have been quite a shock. It wasn't. It wasn't. We knew Dorothy
was a carrier because of her sister and because of tests that had done in the family. So we knew
(08:43):
from a very young age that there was a chance. We hadn't planned either of our children. The Lord
graciously gave them to us. And the first was a girl born two months early with all sorts of
trouble. But because she was a girl, the muscular distra, he wasn't an issue. We knew that was very
rare for the girls. And then when William came along, we knew there was a 50% chance. So we were
(09:06):
kind of anticipating that it was a high possibility that he would have. But yet still you still hope
and there was still a chronic sadness when we discovered that he had the condition. So we weren't
totally unprepared. But I think that the thing that has helped us incredibly, that I don't know
how you'd get through if you didn't know this, but the sovereignty of God, that he is sovereign over
(09:30):
all things and that there is a resurrection because all of our lives are so short, whether we live to
20, 80, 90, 100, it's still so short, isn't it, compared to eternity? Having that eternal
perspective already, but just this brings it into a sharper focus. Would you add anything to that?
(09:51):
Yeah, I think the sadness, obviously there's a massive sadness. But I think in some ways,
Lord works all things for the good of those who love him. And I had grown up with a sister who
had this disability, not as severely, but she had it. And to see how she lived her life, her life
was so worth living. There's no way anyone can say that it wasn't, was helpful for us to see that
(10:16):
actually what 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, what he looks like or what he doesn't look like. And I think being sure
of those things as well as we started on the journey was really helpful. Yeah, day to day,
though, as you described it, it's a lot of work and it's difficult. So how does your Christian
(10:40):
faith sustain you as you care and love William? I think taking it one day at a time really helps.
And so when the Apostle Paul had that thorn in his flesh, and he pleaded with the Lord to take it away,
that he was told, my grace is sufficient for you. My power is made perfect in weakness.
(11:00):
Just that sense of God's grace is sufficient for each day. The problem is when we start worrying
about tomorrow, and 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. And his power made perfect in weakness. I mean, William teaches us so much and is so strong
(11:29):
in one school he's been in. He's the one that stood up to the school bully in his powered wheelchair.
He's the one that stood up to them and told them to stop it, but it wasn't right.
So I think really that sense of God's sufficient grace for each day.
And I think there's two things there. There's that sadness that we've spoken about. And I think,
(11:50):
as Christians, we know that this is a broken world that we're living in. And there is a
realism in that. And we can lament that. And we see in the Psalms so many laments about
how difficult this life and how hard it is. And we lament that yet we don't live without hope.
There's also that wonderful hope, that hope of the resurrection. And if William is trusting in
(12:15):
Jesus, he has a wonderful hope of a body that isn't going to let him down. And after my sister
died, she also wonderfully knew the Lord. And after my sister died, William said to us, well,
Angie, Elizabeth and I are going to climb down to Everest in the new creation.
You know, isn't that wonderful? And recently William came home from school and they've been doing
(12:39):
a mindfulness week or a mental health well-being week or something, one of these things. And he
came home when he said, mommy, 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
(12:59):
rest of your life? What's she going to say then? She's not going to fix that, is she?
I was like, okay, William, yeah, well, that's a pair of points. I said, well, mommy, 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
(13:22):
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. I like to think I'm wise, but
my 10-year-old competes with me a whole pile. Yeah. So 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
(13:44):
years and how that helps him? He's grown up hearing about Jesus from a very young age. So we've been
keen to pray from him from before he was born and we've read the Bible to him from a young age.
We've had family worship and I suppose I saw it answer his questions, brought him to church with us.
So he's grown up hearing about Jesus. And I think if you asked him, he probably wouldn't
(14:09):
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 be able to express it in a way
that is beyond his years. He really has a mature faith for someone of 10. I mean, it's miraculous
(14:31):
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 with Psalms and
on Sunday the pastor was talking about how actually what can miserable Christians sing.
(14:55):
We were looking at Psalm 6 and here's a Psalm we can sing that God sees our tears and William
picked up on that. So that's helpful, isn't it? That actually there are times when we'll be sad
and we can express that to God and sing that to God and he gives us the words to sing.
Seeing William's strong faith is really helpful when it comes to dealing with this. And as
(15:17):
the Jeremy Marshall said, he couldn't get through what he got through without Jesus.
I think we are the same. We couldn't do this without Jesus. He makes such a difference.
(15:51):
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
(16:14):
ethnicity, class, gender, sexuality, religion, belief, educational background, profession and
personality, but it's not fixed. Our identity can change through time and circumstance and even
self-invention. So 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
(16:39):
and sanctified by the Lord Jesus and adopted into the family of God, how does Christ's work
change the way that 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, 23rd of October. When Rory Shiner,
(17:01):
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. Register and find out more on our website
ccl.moore.edu.au. Podcast producer Karen Beilharz here. For the first time ever,
we are conducting a listener survey to help us to get to know you and how you interact with the
(17:25):
CCL podcast. We'd love it if you could fill it in. There are only 10 questions and there are
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 five to 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
(17:50):
link in the episode description or the show notes or visit ccl.moore.edu.au/podcastsurvey.
That's one word. ccl.moore.edu.au/podcastsurvey. Thank you again
for your support. And now let's get back to our program. As well as the resources, the Bible,
(18:12):
the Lord's strengthening you, you have a Christian family. Do you want to speak about how the
church has helped you? And I know that in the past, Christians have not always been helpful.
Do you want to speak a little bit about that as well? Yes, I think Christians often struggle to
talk about brokenness. We want everything to be all right and we want to be positive.
But it is a broken world, isn't it? And there's so much brokenness in the Bible and there's so
(18:38):
much that points us to the new creation and to Jesus being the solution that it's okay to be
sad, you know, and to express that. And it doesn't mean you're not a Christian if you're feeling
sad. And I think sometimes Christians can be a bit too quick to try and just jolly you along and
think of the positives and well, at least it's not that. Yeah, but it does still hurt and it's not
(19:03):
wrong to express that hurt. Other unhelpful things, I suppose, are people trying to promise healing
and suggest that if you have enough faith that God will heal. And I went through all this when my
mum died. I was only 14 and there were Christians promising her healing. She had cancer and
Christians saying really unhelpful things and making promises that God doesn't make,
(19:27):
which left me absolutely shattered when she died, feeling that God had let me down when God actually
had never promised the healing that these people were promising. And I've encountered that from
Christians saying maybe there's something you need to confess. And that is just so cruel to say
because it puts the burden on me and makes me feel like I must have done something to cause this.
(19:51):
And have we not enough to deal with without someone trying to blame you for doing it? And
in fact Jesus paid for all my sins is such a relief. And I was able to stand up to the man and
challenge him, but it hurts when people say things like that and they might be meaning well,
but it can hurt. Positive stories though in terms of being cared for by other Christians and church
(20:16):
communities. 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, a wet room and just Christians offering
to help in those practical ways has been fantastic, hasn't it? People getting alongside and praying,
(20:36):
sending messages of encouragement, having the church family that loves and cares for you.
This week William had a hospital appointment and Dorothy took him to that and 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 to have the church family stepping in and
(20:59):
doing those sorts of things. It's been really cool. And we did have a family, well, a family we still
know and see, but it's difficult for us maybe to go and visit people and they came and visited us
and stayed with us, which was lovely, which is brilliant. And it means that William could interact
fully because everything here is set up and he could hang out with their kids and it was great.
(21:21):
And 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? Inclusion is a funny
kind of word, isn't it? What does inclusion mean, I suppose, is 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 have
(21:44):
no worth. That's not true. Every part of the body needs to be there. We need each part of the body.
And there's a loving church family. We need to facilitate everyone to play that part. And it's
so much more than just saying, oh, we've got to ramp up to the front door. Now you're in, that's it.
Good job. And there's a lot more to it than that, isn't there? Is it facilitating
(22:05):
folks to serve one of the ways in which I think our son serves in churches, just being enthusiastic.
Whenever there's a question for the children, where William's hand is off, he wants to answer
the question. And that encourages other children as well, doesn't it? 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
(22:28):
being played that they can't join in with. So I think being aware of people with not just physical,
but lots of different additional needs. But 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 remember all of the additional needs. So when you do something like a Sunday school,
(22:50):
is it accessible? Can they get into the room? When you have games, maybe have a think of,
is there a particular role that the child who maybe struggles with whatever it is they struggle
with, can they play a particular role in a game so that everyone can join in and them not be kind
of stuck on the side. And just church family as well is inclusion. That's kind of the public
(23:13):
worship on a Sunday, Sunday school. But just including folk with disabilities within the
church family, maybe your house is not accessible. Maybe you've got 10 steps up to your front door.
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. So things like that, making sure that those who are struggling
(23:35):
in that way can participate because they have so much to offer and we need folk of all types
in the body of Christ. Yeah, absolutely. Nick, I wonder if we could finish speaking about Leviticus.
You have a blog, lightandmomentary.org. This is what I want to check that out,
lightandmomentary.org. And in a recent post, you wrote about the encouragement that you drew from
(23:59):
Leviticus 21. Can you tell us how that chapter encouraged you? Yes, it's just a blog going
through a Bible reading plan. And it happened to be a reading on Leviticus 21 that day, which I
suppose many people might dodge. It might be a bit of a strange passage, but it's actually strange.
At a first glance, it might sound like disabled people are being left out. But actually, there
(24:23):
was a criteria for the priesthood, I suppose, pointing us to our perfect High Priest, the Lord
Jesus, so there could be no physical defect there. But they were entitled to eat the bread,
which was a sign of them being welcomed into God's presence, those with whatever the disability
might have been, whether they were lame or mutilated, injured. There was a way for them to
(24:48):
be included that God cared for them. And then clearly through the Lord Jesus, as we see him as
our perfect High Priest, we looked at him and the way he treated disabled people. He went out of his
way to spend time with disabled people. And 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
(25:12):
foretaste of how good his kingdom will be when there will be no disability, when there will be
no suffering, 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 Testament. And you see it with David looking
after one of, I can't even remember the name now, Mephibosheth or something. There is Mephibosheth
(25:35):
Salson. Yes, provision made, isn't there? There's special care given, which is right. And the apostle
Paul talks about that as well in Corinthians with giving special care to those parts. So yes, 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. But I've called it “Light and Momentary” after Paul's
(26:00):
description of his trials, which to us sound very severe. He was able to call them “Light and
Momentary” compared to that eternal weight of glory that outweighs them all. So that was the
little encouragement I took there. That's a wonderful perspective. I thank you Dorothy and Nick
for your time and just helping us to see how your Christian faith sustains you as you care for and
(26:25):
love your wonderful Son made in God's image and the hope that we have will enjoy eternity together.
And I look forward to seeing William run and jump in the new creation. And thank you guys.
Thank you. 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
(26:49):
and care for their disabled children. Her insight was so helpful that I asked her to record it again
for me. And that's why the audio on this next question is just a little bit different.
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?
(27:10):
I suppose particularly initially after a diagnosis, families can be very keen to get a cure, to maybe
raise lots of money for scientific research to find a cure for DeShane. And don't get me wrong,
we would absolutely love a cure. But I think you can become so consumed with raising money and doing
(27:32):
various different fundraising activities to raise money to get a cure that maybe you can
miss out on spending time with your child to a certain extent. Or there can be the idea of maybe
we need to cram every experience under the sun into a very short period of time. Like we need to
go to Disneyland and we need to do this or we need to do that and maybe we need to fundraise to do
(27:54):
these things as well. And to a certain extent that's right and good to enjoy time together. But
I think that can all happen when you think that this life is all there is. And 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
(28:19):
as we can and enjoy William and know that there is a wonderful hope ahead where he will have a cure
where every experience under the sun will be there. So I think the resurrection again makes a massive difference.
(28:50):
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 that more people can discover our resources. On our website,
(29:14):
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'd like to
thank Moore College for its support of the Centre for Christian Living and to thank my assistant,
(29:37):
Karen Beilharz, for her work in editing and transcribing the episodes. The music for our
podcast was generously provided by James West.
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