February 11, 2025 • 46 mins
If you're a caregiver or you know someone caring for a child with special needs, a spouse with an illness, or maybe an aging parent, don't miss Chris Fabry Live. Jess Ronne is walking the caregiving trail with grit and grace. She and her husband have eight children and they founded a residential home for disabled adults. Hear hope and encouragement for your caregiving journey on Chris Fabry Live.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
S1 (00:05):
Welcome to our Tuesday edition of Chris Barrie Live. And
an important conversation for a group of people who feel unseen.
Our guest today has written about the struggles of being
a caregiver for her son, also a caregiver for her
husband when he was diagnosed with a tumor. And what
I see in her life, her writing in the documentary
(00:26):
that she helped create, is this phenomenon that we have
talked about time and time again, that the wound, that
one person experience becomes a place of healing for others.
When you are a good steward. Her name is Jessica
or Jess. Ronnie. You have to hear her story. And
(00:47):
if you are a caregiver and you feel exhausted today
and you try to project the image that you're fine,
you're doing well, but you're not. Friend, you are not alone.
And today's program is especially for you. And if you're
not a caregiver, get a little closer to the radio today.
My guess is you want to help others, but you
(01:08):
don't know what to do. So before we even start
the conversation, I have five words for you. Are you
ready for these? When you encounter a family that has
a child with special needs, five words. Here they are.
Do not turn your head. We're going to dig more
(01:29):
into that today at the radio backyard fence. Let's get
going first with a thank you. It's always good to
be thankful. Thankful for Ryan, who's doing everything technical. Tricia
is our producer. Lisa's in the chair today. Look, Deb Solomon,
we've called in the A team to help us out.
If you call us today, Deb will be answering your calls.
I can feel it in my bones. Today's program is
(01:49):
going to be a lifeline for somebody, a life preserver.
At least that's my prayer. You're going to hear someone
who sees you, who understands your struggles because she lives there.
But there are a lot of people listening who are
not caregivers, who don't have a spouse dealing with dementia, perhaps,
or a disabled child. And I'm hoping this conversation will
(02:12):
turn a light on your in your head about what
others are going through. And we are able to have
a conversation like this because somebody like you called or
clicked through and gave a gift of support to this program,
and I want to pause and just say thank you
for doing that. One of the primary reasons that Moody
Radio exists, and this program as well, I believe, and
(02:34):
makes an impact in people's lives, is that it's a
ministry that introduces you to life changing resources and materials
and encouragement. So I want to challenge you today to
be the person who says, I want this to continue.
Give a gift of any size. Or you can give
a monthly gift at the website. Or call 86695. Fabbri. Ah.
(02:57):
Thank you. This month is the book by Doctor Gary
Chapman who's going to join me tomorrow. A book titled
Your New Life with Adult Children. I know a lot
of people are in that season and have some struggles.
This is our way to say thank you for going
the extra mile to support us to do that today,
if you can. (866) 953-2279 or go to Chris Fabry Live.
(03:21):
Scroll down and you'll see how to be a friend
or partner right there. Thank you for your support of
the radio backyard fence. All right. Jess. Ronnie Ronnie is
an listen to this author caregiver advocate, podcast host of
coffee with caregivers. Associate producer of the documentary Unseen How
(03:41):
We're Failing Parent Caregivers and Why it Matters. She holds
a master's degree in education. She is the founder of
Hope farm, a residential home for disabled adults, and the.
If that's not enough, the executive director of the Lucas Project,
which is a nonprofit dedicated to serving parent caregivers with recognition,
respite and resources. She's written several books as well, including
(04:06):
caregiving with grit and Grace. Jess and her husband, Ryan
live in Holland, Michigan, the land of No Left turns
and have eight children, so she's exhausted today for one
reason or another. Jess, it's great to have you with
us today. How are you doing?
S2 (04:22):
I'm doing well. Thanks for having me.
S1 (04:25):
And you can tell I've been to Holland, Michigan, can't you?
S2 (04:27):
I can tell, yes. You accurately described our land.
S1 (04:32):
I said those five words. Do not turn your head.
And that comes directly from the documentary unseen, which is
just excellent. It brings you right into your world and
to the world of a lot of people who are
giving care to disabled children or children with special needs.
Why is that important? Do not turn your head.
S2 (04:56):
It's important because it's time that we're seeing, um, as families,
as disabled children, as disabled young adults. You know, so
often I hear from people and even pastors as I'm
chatting with them about how they could serve families like ours.
And they'll say, I, I don't see these families. I
(05:17):
don't see them in our communities or out and about.
And my answer to that is, of course, you don't
see them because the world isn't made for families like ours. Um,
it's not accessible, it's not accommodating. And because it's so
challenging as a profoundly disabled child begins. Begins to age
(05:37):
like my Lucas, who is primarily non-verbal and would scream
when he needed something and become slightly aggressive and have
behavioral challenges. We just get to the point as families
where we're just more comfortable staying home, And so we
isolate ourselves and, um, and we stay home. And depression
breeds in isolation. And that's not good for anybody. It's
(06:00):
not good for us, the caregivers. It's not good for
the child with disabilities, and it's not good for society
at large. Not to be aware that families like ours exist.
S1 (06:12):
So Lucas and the documentary is 16 and I don't
know when that was created. Is he still 16 or
is he 17, 18?
S2 (06:20):
No, he's 20 now.
S1 (06:21):
He's 20. Okay. Got it.
S2 (06:23):
Yeah.
S1 (06:24):
So we caught him right in in that vulnerable state.
And and that's one of the most haunting things about
the documentary is you hear his screams, cries, banging the
the wall and you start to feel what you experience
every day. And your children and your husband too. Right.
S2 (06:46):
Mhm. Yeah. It's hard for me to even watch the
The documentary. It brings me right back to that place
of PTSD. You know, they often do compare families like
mine as we walk through these very challenging experiences as
our children age to that of similar experiences of war vets,
(07:08):
because it is, um, you live in this heightened state
of fight or flight for years on end. I mean,
I slept with a baby monitor beside my my head
for 20 years because Lucas didn't sleep well. And I would,
you know, wake up throughout the night to screaming or, um,
as he began to go through puberty, we had a
(07:29):
lot of aggression and that even turned into lashing out, um,
against his siblings or against us. And so we had
to set up our home in such a way where
everybody could stay safe, um, including Lucas. So we did have,
you know, boundaries in place to try to ensure that
everybody could lead as normal as a life as we
(07:53):
could provide for each member of the family.
S1 (07:56):
So you were seven months pregnant when the doctor, when
you went in for an ultrasound and the tech went
out and said, be right back. You know, and you
knew something was up, right?
S2 (08:08):
I didn't really I was 20 weeks, actually. It was
my 20 week ultrasound appointment. And I was very naive.
I had a very healthy one and a half year
old back at home. I was young and healthy and
never crossed my mind that there would be something wrong
with this pregnancy. And she said, I'll be right back.
I have to go get the doctor, and still didn't
really cross my mind until the doctor came in and
(08:30):
started saying, you know, um, this this baby experienced a
stroke in utero. There's very little hope. You're young and healthy.
I would suggest you terminate and try again. Um, these
fetuses just aren't supposed to make it. And that's when
my life changed forever, honestly. I mean, that was the
day I became a forever parent caregiver.
S1 (08:54):
Any regrets?
S2 (08:56):
No. No. Absolutely no. Um. Being Lucas's mom has changed
me in the most remarkable ways. Um, God has used
that experience. Like, I could get choked up talking about it. And, um,
you know, I always thought Lucas needed the healing, but
God used Lucas to heal me of all of my
(09:19):
preconceived ideas about my faith and about other people, and
about what it looks like to, uh, serve others as
Christ served us in his earthly ministry. And, you know,
Lucas has taught me more than any man or woman
behind the pulpit ever has. And for that, I'm extremely grateful.
S1 (09:39):
Yeah. Okay. So that's. You had two. Lucas was your second.
You and your husband, Jason had four children. Right. Okay. Yup.
And at one point, Jason went to the doctor for
a diagnosis. Tell me about that.
S2 (09:59):
Uh, after our daughter Mabel was born in 2007, she
was about six months old. And Jason kept having all
of these weird, um, symptoms. Like, he would become really disoriented.
He lost a ton of weight, like, £20 in a
month or something. Um, he was having vision loss, and
(10:20):
he kept going to specialists. And the specialist kept saying, well,
you have type one diabetes. You just have to get
your sugar levels under control. And this diagnosis just came
out of the blue. I mean, Jason was a tennis professional,
a personal trainer, a gym owner, and he was diagnosed
with type one diabetes, like out of the blue. It
didn't make any sense. And then one night I said
(10:43):
to him, I just need to quick run across town
to town to my dad's house. I'll be right back.
Are you feeling okay? Because he would have good days
and bad days. He was like, yeah, I'm good. And
I pulled into my dad's driveway and my phone rang
and I picked it up and it was Jason. He said,
just call 911 and the phone went dead. So I
rushed back home. Um, entered my home to ambulances and
(11:07):
police cars, and Jason sprawled out on a stretcher. And
right before he passed out, um, he put a movie
in for Caleb, put Lucas in his exersaucer, and put
Mabel in her bouncy seat. And then he seized until
he passed out. And we ended up at the local E.R.
that night where they discovered a baseball sized brain tumor. Um,
(11:30):
and he underwent surgery the next day. It was only
a stage two at that point, so we were told
that we could just watch and wait and see what happened.
And in our minds, we were like, you know what?
I think we've been tested. Lucas had brain surgery, Jason
had brain surgery, and now we're. We're good. Um, and
we were just moving forward in faith that, um, we
(11:53):
weren't going to have to deal with this again for
a very long time.
S1 (11:57):
Yeah, but that's not how the story ended with Jason.
And you're going to hear more about that from Jess
straight ahead on Chris Fabry live. If you go to
the website Chris Fabry Live, you'll see our featured resource today.
I hope you will take advantage of both the documentary
unseen as well as the book caregiving with grit and Grace.
(12:20):
It'll it'll move you. It'll touch you. It'll encourage you
if that's where you are today. There's more straight ahead
on Moody Radio.
S3 (12:36):
Our special guest today is Jess Ronnie.
S1 (12:39):
You can find out more about her at Chris Fabry Live. Org.
Caregiving with grit and Grace is our featured resource. There's
also the documentary unseen. We'll talk more about that coming
up here. But I want to open the phone lines
today at (877) 548-3675. And if you are a caregiver and
(13:02):
you are staring at the radio right now because it's
eerily similar, what Jess is describing, it's not exactly the
same as what you're going through, but you're feeling a
lot of the things that she has felt and that
others are feeling. Would you call and tell me who
you're giving care to and maybe answer this question? Or
(13:24):
you can ask a question too. But the question is
fill in the blank. I wish someone would blank. I
wish someone would blank and answer that question for us
here today at the back fence. I'd love to hear
from you because I think, Jess, your main point here
(13:47):
is to be seen, and part of being seen on
the radio is to be heard. So your voice will
do something today. (877) 548-3675. Now at the end of the
last break then. So Jason, they they took that tumor
out that baseball. Did you say it was a baseball
(14:08):
sized tumor?
S2 (14:09):
Baseball sized tumor. Yep. They they removed that and we
went home just convinced that we wouldn't have to deal
with cancer anymore. Uh, we were told sometimes these cancers return,
but it could be 20 years. And we were just
having faith that that was that was the plan for
for our marriage and for our family. And so much
(14:29):
so that we had another baby. Um, in the middle
of that, I got pregnant, and a couple of months
after we found out I was I was pregnant. Jason
began having all of these symptoms again, and so he
underwent an MRI where they discovered that the cancer had returned,
(14:51):
and this time it had returned as a glioblastoma. And
the doctor looked at me and said, I'm so sorry
to have to share this with you, but the life
expectancy for this type of cancer is typically about 14 months.
And Jason lived for exactly 14 months. He passed away
on August 24th, 2010, one month before his infant son
(15:14):
turned one years old.
S1 (15:16):
Wow. So in the moments then that you heard of
the ultrasound and what Lucas, you know, and special needs,
and this is going to be a lifelong thing. And
then 14 months of caregiving for your husband. You must
have felt like Job in a in a sense. So
(15:40):
when when did the boils going to come and, you know,
that kind of thing because it just sounds like it
was being poured out on you.
S2 (15:47):
Yeah. I was so angry. I mean, I look back
during that period and it was almost like anger was
a fuel that I tapped into to keep myself going. Um,
because by the time Jason passed away, I was a
33 year old widow with four children, six and under,
including one with profound disabilities. Um, and I, I just wailed,
(16:11):
and I often I think of it now as like
Jesus almost in the Garden of Gethsemane, just lamenting and wailing, father,
please take this cup from me. But at the end, literally,
like two weeks before Jason passed away, I just dropped
to my knees and surrender and said, but not my will,
but yours be done. You are God and I am not.
(16:33):
And I do not understand why you would make me
walk such a hard path this side of eternity. But
I will be faithful and I will will obey whatever
you call me to do. And it was sort of
this moment of reckoning between me and the Lord, where
I had to get to this place of complete surrender.
(16:53):
And I did. And two weeks later, Jason entered eternity.
S1 (16:58):
Not only surrender, but also full trust. Because you are
you're poor in your life at that point, and I'm
sure you probably had some folks around who are helping
you with Lucas. But I mean, he is a full
time 24 hours a day, right?
S2 (17:15):
Yeah. And, you know, that's that's an interesting point that
I always, I like to talk about because I had
more help than I knew what to do with when
my husband was going through cancer for three years. Literally,
I had more meals than lawn care and laundry and
house cleaning and gift cards and money and everything, um,
(17:37):
for about three years. But in raising a profoundly disabled
child for 20 years, there's been very little help, um, in,
in that journey. And I think I've processed and really
thought about this a lot. And I think as human beings,
we we like short term. Um, that's why we go
on these short term mission trips, even. We like to
(17:59):
go and help and feel good and take selfies, and
then we get to go back to our normal lives.
And when somebody has a child that is disabled forever
and they just they don't heal and they actually begin
to get more difficult and more challenging and there's like
no end in sight. I don't really know that we
(18:21):
know what to do with that. Um, and so just
processing that and really encouraging people to see those families
with those children because they need just as much help
and help and support as the family who is walking
through that cancer journey with their husband or loved one.
S3 (18:41):
That's what I picked.
S1 (18:42):
Up in the documentary, especially when you're at the park
and you've got Lucas is there, and then the other
kids and we need to close the loop on the
rest of the. There's, there's a there's another part of
the family that we didn't get to yet. We'll get
to that. But Lucas is there, and he wants to
go get in the car, and he can't speak, but he.
(19:05):
You can tell, you know, that he wants to get
in the car and you say, well, yeah, Lucas, you
got to go on the other side. So, okay. He
goes on the other side. There is just this sweetness
to him that that comes through, even though, you know,
the flare ups and all of that, when he goes
into the other side of the car and you get him,
get him in and seatbelts and all that, but that's
(19:28):
where you look at the camera and you say, there's
so many people who I just wish somebody I wish
someone would. That's where I came up with the question.
I just wish someone would look at us and would
see us and not turn away. Right.
S2 (19:46):
Mhm. Yeah. It was that that question you opened with. Um,
I knew the answer immediately what my answer would be.
I wish someone would help with Luke. That was, that
was my answer for 20 years. Um, because we, we
desperately needed help with Luke and it was very challenging
to find that help.
S1 (20:07):
Yeah. And now the group home that you started is
where he lives at 20. He lives there full time, right.
S2 (20:16):
Mhm. Yep.
S1 (20:18):
So that has been has how how has that uh
has that relieved you. In some ways.
S2 (20:27):
It has I, I am exactly one year out. So
he moved into that home February 1st. And I'm still
in this cycle of grieving, processing, accepting, um, my whole
identity for the past 20 years. I mean, all the
(20:47):
things I've created, the thread was always Lucas, and I'm
trying to figure out what to do with all this
space that I have now. It's really uncomfortable. I'm sure
I'll fill it somehow.
S3 (21:00):
Um, well, isn't that the surrender.
S1 (21:01):
That you were talking? And the trust is? This idea came,
and it's giving life to Lucas. You know, he's he's
able to live there, but that is a surrender.
S2 (21:14):
Oh, absolutely. I mean, that was the whole process. That
was like a four year process of getting me to
that point. And even the Lord convicting me and saying, um,
you know, if you don't trust me to care for Lucas,
Then this identity that you have that's wrapped up in
its care has almost become idolatry. Yeah. Um, and.
S1 (21:37):
That's the sneaky little thing. You know, the enemy can
use even the good stuff and turn it around, turn
our hearts into to an idol. Can it?
S2 (21:45):
Yeah, absolutely. Yep, yep.
S1 (21:48):
All right, so I wish someone would. Uh, Maggie's in Vermont. Maggie,
what do you say?
S4 (21:55):
Hi, Chris. You know, just listening. I feel like identity
is huge. My daughter, um, was studying for a PhD
in Berlin. She contracted Covid. It kind of knocked her
on her feet, and she came home to rest and recover.
It turned into long Covid. She continued to decline to
the point where she needs a wheelchair. She needs her
(22:15):
food pureed and brought to her. Noon three and seven.
And on one hand, I have this beautiful, intelligent, fun
35 year old and on the other hand, I have
someone Who needs to be fed at noon, three and
seven and needs the food to be prepped and brought
to her. And I know initially it was hard to
(22:39):
surrender because I was in mom mode, you know, let's
see the doctor. Let's get an answer. Let's fix this.
Let's see what we can do to, you know, help
restore Sarah to, you know, her former quote unquote former self.
And really, what I have slowly been shown is that
(23:00):
she doesn't need someone to fix her. She from me,
she needs mom, and she needs encouragement and she needs support. And, um,
that that transition is still happening because frankly, there are
times when I just want to jump in and and
help her. But, um. Yeah.
S5 (23:21):
So it's a daily fight.
S1 (23:23):
What I hear you saying is it's a daily fight,
I believe. Help my unbelief. Just like the man said
to Jesus, I believe that he can do this, I believe.
And Jess, you must identify with what she's saying.
S2 (23:37):
Oh, absolutely. It is a daily fight, and I don't
know that we ever really arrive. Unfortunately, it's it's that,
you know, strengthening of our of our faith. And, um,
it's bringing it to the Lord every single day, and I,
I still do that. I bring it to the Lord
and I, you know, I surrender in my weakness and
(23:58):
ask for his strength.
S5 (24:00):
Yeah.
S1 (24:01):
Maggie, I didn't give you a chance to answer the question, though.
I wish someone would. Is the answer. Uh, figure this
out and tell me the answer to it.
S4 (24:10):
Well, no, the answer really is tell me whether this
is my new normal. Or is there hope that Sarah
will regain some level of her previous self? And I
think I've come to the place of being okay if
it's her new normal. And I read an article in
(24:30):
the New York Times just last week called I Love you.
Please find someone Else. I urge everyone who is taking
care of someone with a chronic illness. I wept when
I read it because you're right. We we we want
to be seen and heard. And I have a beautiful faith,
family and circle of friends. But it's hard when I
(24:55):
don't even understand what I'm going through.
S5 (24:57):
Right. There's.
S1 (24:58):
That was one of the questions that I wanted to
get to. And we're going to do that today. And
that is. How's the church doing with this? Because we
ought to be doing really well, and we ought to
be seeing a lot more people than those in the
general population, you know, who aren't believers. We ought to
be doing better. And I want to hear what Jess
has to say about that. You can find out more
(25:19):
about Jess Ronnie at our website. Ronnie is her name.
Caregiving with grit and Grace is just one of the
books that she's written that has kind of come out
of this crucible, as well as the documentary unseen. We
have a link to that as well. Just click through
today's information at Chris Fabry Live Unseen How We're Failing
(25:42):
Parent Caregivers and Why it matters. More of your calls (877) 548-3675.
Straight ahead.
S5 (26:02):
We're talking about.
S1 (26:03):
Caregivers today on Chris Fabry Live. And I sure hope
this is a conversation that encourages you. I look forward
to some email. This is exactly where I am. How
did you know that? Well, I don't, but God knows
where you are. He sees you. There's a ministry called
Care Net that sees a lot of different people they
are known as a pro abundant life ministry, which means
(26:26):
they are fully committed to the unborn, while at the
same time fully committed to the women and the men
who are making decisions about that unborn child. They want
everyone in that equation to flourish, but they also want
to encourage you wherever you are in your journey. So
they developed a 365 day Abundant Life devotional series, absolutely free.
(26:49):
You can get it online if you go to. Org.
Click the green net link and the stories in that
devotional will encourage you. They share from the front lines
of Care Nets ministry, and give specific ways to pray
for women and men who are making those decisions, as
well as for their front line workers to have wisdom.
(27:11):
When you read these stories of the way that God
has orchestrated the saving of lives, I think it's going
to motivate you to pray. So access your free 365
day Abundant Life devotional series by clicking that Green Connect
link at Chris Fabry Live. Chris Fabry live.org, where you'll
also find out more about our guest today, Jess Roney.
(27:34):
And the question I asked you to fill in the blank.
I wish someone would. Liz is on the line from Cleveland, Ohio. Liz,
tell me why you called.
S6 (27:44):
Oh hi Chris. I wanted to thank you for this
interview today. I'm a clinical mental health counselor, and I'm
just very grateful for this because there is not enough
awareness of the needs of these families. I have 50
clients in. Only one of my clients had a similar situation.
Her teenager was severely autistic, non-verbal, and she mentioned to
(28:07):
me that she thought she had trauma from his needs. Um,
so this is something I never learned about in graduate school. Um, the,
you know, the things the families go through. So after
hearing today, I just wanted to wanted to say thank
you so much, because I think this is an area
in mental health we could use more training in, and
just to try to be able to help people with
(28:28):
all of these, these issues with the isolation and with
even not seeing them in the churches. Yes. You know,
I haven't seen this in my private practice.
S1 (28:37):
Bingo. Bingo. Liz, I'm so glad you called. And I
want to send you to that website because they have
a newsletter that you can see as well as you
can sign up to see the the documentary, I think
February 21st. It's it's free during that week because it's
National Caregiver Day or week. Um, so hang on, we'll
(28:59):
make sure you get that info. But Jess, what do
you say to somebody in the mental health, uh, in
the care field who says, you know, I don't know
about this?
S2 (29:10):
Yeah, she's right on. Um, which is why we created
the the documentary. Uh, because that's the response we get
from most people, um, is I didn't know these families
existed or I didn't realize it was so challenging. And
I think part of that perception is because, well, your mom,
you know, you're just supposed to take everything that comes
(29:31):
with being mom. And that's true to an extent. But
in raising a child like Lucas, you know, most people,
most moms or dads also look forward to the day
when that child eventually, you know, flies the coop and
gains a little bit more independence. Hopefully, God willing, and,
you know, starts to establish their own life outside of
(29:55):
mom and dad. And when you have a child like Lucas,
that doesn't happen. And there is no flying the coop.
There are there are no other coops available where that
child could even go. Um, and in fact, that child
becomes more and more challenging as the caregivers mom and
dad become more, um, as the, as mom and dad age.
(30:17):
And that makes it just extremely challenging for everybody involved.
And I just wholeheartedly believe that we do need more
awareness around these these subjects and these families.
S5 (30:30):
Yeah. So go to the website again.
S1 (30:32):
We have it linked right there. Click through today's information.
You'll see more about Jess. And there's a way to
sign up for the newsletter to go to the unseen website.
Just click that green link. Oh we got green links everywhere.
We got chris.org. We also have the book caregiving with
grit and Grace right there. I didn't mention the there's
(30:56):
a fellow named Ryan who at the at the same
time that your husband was going through the latter days
of what was happening to him with his cancer and
the glioblastoma, his wife was going through a similar thing. Right.
Tell me about him.
S2 (31:15):
Yes. Um, this is where the story turns. Um, and
it actually begins at Jason's funeral, when Jason's mom pulled
me aside and said, Jess, I just want you to
know that I'm praying that God sends you your next husband.
And I was, like, sort of floored and didn't really
know what to say. Um, but she was she was
(31:38):
on the right track because three months later, I was
checking my blog that I had kept updated during Jason's
cancer journey, and a stranger from Pennsylvania left a comment
on my blog. And she just said, Jess, I have
no idea why I'm asking you to do this, but
there was a young widower in Oklahoma. He lost his
wife to brain cancer four days after Jason died. He
(32:00):
has three young children and he's not doing very well.
And I just think you could be a source of
encouragement to him. So I found his blog and left
a comment, and woke up the next day to an
email from Ryan. And that led to numerous emails and
phone calls, and we eventually met and we were married
within the year.
S5 (32:20):
Wow.
S2 (32:21):
So yeah, long story short.
S1 (32:25):
That is that is a very, uh, romantic story and
long story. But Ryan had both eyes open when coming
into this, and he's part he's a great part of
that documentary. He knew what he was signing up for
with Lucas, at least from what you know. He didn't
(32:46):
know exactly, but he he came in to say, no,
I'm going to be part of this, right?
S2 (32:54):
He did. And he'll tell people he's asked this question
a lot. I find it kind of humorous. I'm never
asked what I thought about taking on his three children,
but he's always asked what he thought about taking on
my four children. Um, and he just he he'll say,
I fell in love with Jess. And it was a
was a package deal. And it was. He was just
(33:15):
being obedient to the Lord. Um, and, you know, Lucas
was young. He was five. So there was he was
still very adorable and manageable. And neither one of us
really knew what those teenage years were going to look like.
You know, ten, 11, 12 years down the road. Um,
it's probably good that we didn't know. Uh, but, like, like,
(33:39):
people still did help us when Lucas was young. Um,
it just became very, very challenging the older he got.
S5 (33:47):
Yes.
S1 (33:48):
And, and in the documentary, you talk about, you know,
how do you have a job? You know, you can't
work full time. And then an employer, you know, if
you have to take six weeks off because your son's
going into the hospital and you don't know how, you know,
it's very hard. So you've worked it out so that
he has a job where he can work basically at
(34:11):
home and make this happen. But there's a lot of
different things. One of the things that really surprised me
was how few opportunities there were or choices there were
for like a camp, you know, for for Lucas and for, uh, to,
for him to be able to and all the other
(34:32):
kids could, could do that, you know, for a week.
But there's nobody because of his situation. There's no one
offering that or you couldn't find that. And that's what
parent after parent after parent said that you were talking with.
That's a struggle.
S2 (34:50):
Yeah, it is a struggle. Um, I found that a
lot of ministries and nonprofits, uh, often serve the moderate or,
or mild, uh, disabilities, but they don't really open their
doors often to those with more severe disabilities. Or if
the incontinence factor is part of the of the equation.
S1 (35:11):
Catherine's in Tampa, Florida. Catherine, why did you call today?
S7 (35:15):
Hi. Yes, hi. Thank you for taking my call. Um,
I was calling because I have I have, um, two
adult children. Well, they're young adults, you know, with me and. Yes, um,
I remarried in 2010, and my husband had a stroke
in 2017. So I took care of him for the
(35:38):
next three years, and he passed away in 2020. So
I'm back again being a single mom and, um, just
listening to what Jess was saying and in reference to
what do you do when you get older? I'm 71
and I don't have anybody. And and in response to
(35:59):
answering your question, one of the questions, one of my
answers would be just to have someone, some young, um,
gentleman or young lady be able to take my kids
out for a couple of hours just to relieve that.
And it would be good for them too. So they're not,
(36:21):
you know, at home all the time either. And, you know,
just to be able to, to go out and do
things and trust people that they're with. And it's very hard.
You know, we go through the system and we go
through people, but, you know, to let them go with
them in their car. And and it's very hard. It's
(36:42):
very hard. And, and one talks more than the other.
My daughter has down syndrome and my, my son has
just developmental disability. Um, for them, for me to get
feedback when they come back and you hear the stories of,
you know, what these companions or caretakers do. And so,
(37:02):
you know, I can't just let them go. It's hard.
S1 (37:06):
So there's so much, Catherine. There's so much of what
you just said that is reminiscent of what I saw
in the documentary and what you deal with in caregiving,
with grit and grace. And then that big question. Well,
I'm getting older. What is going to happen? That's one
of those questions that that that there's no one you
(37:27):
can talk with about that if you're a single parent.
Now let me take our final break. I'll get Jess
in here and she can respond to your question. But
do you see the value of hearing Kathryn's voice, seeing
you're not alone? You are seen. We're going to talk
more about that. Go to the website Chris Fabry live.org.
(38:00):
We've been talking with Jess Ronnie today at Chris Fabry
Live at the website Chris Fabry You'll see a link
there to her book. It's a devotional. There's probably somebody
in your life, if you're not a caregiver, somebody who
needs the devotional caregiving with grit and grace and all.
(38:21):
Anybody listening to my voice right now, watch the documentary
Unseen How We're Failing Parent Caregivers and Why it matters.
There's a green link right there. You can sign up
for the newsletter and see that absolutely free. But you
have to wait until I think the week of the 21st.
But when I heard Catherine, you heard Catherine's voice kind
(38:43):
of break when she said, I just wish someone would
come and take my kids out to be able to
get out of the house to give a little bit
of relief. And I think you heard the same thing
that I heard the exhaustion, the all of the questions there.
What do you say, Jess?
S2 (39:04):
Yeah, I mean, I was her for many, many years
and it's a really challenging place to be in. And
I guess, um, for me, it was learning to be
honest with the Lord about my fears and about my needs,
and then learning to also be honest with others, um,
about my needs. I know as caregivers, we are really
(39:25):
good at, um, at pretending like everything's fine and we
can handle everything on our own, and sort of adopting
this martyr caregiver syndrome where nobody will care for our
loved ones like we will. And I would just really
encourage people to begin to let the Lord soften your
heart and, um, and also relieve your fears so that
(39:48):
other people can step in and provide that rest and
that respite that you desperately need.
S1 (39:57):
There's something that Ryan, your husband said that really hit me.
He said, I don't make five year plans anymore, you know.
And if you if you've schematic your life out, it's like,
we're going to do this, we're going to do that.
Read the book of James and you see how that
can fall apart. But he said, I know I'm taking
it a day at a time, and you really have
(40:19):
to in a lot of ways, right?
S2 (40:22):
Yeah. He doesn't make five year plans. His wife does. Um,
not really, but you do learn to live. I think
losing our spouses at such a young age and going
through so much trauma at such a young age, as
challenging as it was, can also be a gift because
you really do learn to live in the present and
(40:44):
to see and value each day as a gift. Um, and,
you know, that was sort of the sentiment behind what
he said was we just don't know. And so we
we strive to live in the present and to find
joy in the present. And really, the Lord is only
found in the present. Um, and so it's really working
(41:06):
that muscle to learn to be intentional about staying present.
S1 (41:11):
I said I was going to ask you this question.
The church. How are we doing in the church with caregivers?
S2 (41:19):
Um, um, specifically caregivers of children with profound disabilities. I
think we're really, really missing the mark. Um, I see
a lot of programs that are geared towards more moderate
or mild disabilities, but those families with the more severe
children who really do need a separate space. Um, so
(41:44):
that they can get some respite and worship without their
child screaming or grabbing them or being aggressive or those
spaces are not readily available. Um, and it kept us
out of church for many, many years in rural Tennessee
because we couldn't find a church that could accommodate Luke,
and we would often hear, well, just bring them into
(42:06):
the sanctuary and he can worship with you. And that's
it's just not worship for our family with him screaming
and pulling my hair and, you know, saying, all done. Bye.
See you later at the top of his voice, like
we need a separate space. And, um, I've talked to
different pastors too, over the years and about, you know,
being accommodating towards families like this. And I'll get a response,
(42:31):
something like, well, we have the wheelchair ramp or we
have the elevator, and those are great. And they do
make your your sanctuary accessible. However, once again, we're not
making it accessible towards the more severe population. And that
may include, you know, incontinence or some elopement issues or
(42:52):
some aggression or nonverbal. And I think that fear is
what keeps a lot of churches from diving in, but
I would say there are a lot of people that
could really help. Work through those fears and help you
put structures and tools in place that it would. Become
a successful endeavor for everyone involved.
S1 (43:13):
What has this done to your kids, Lucas? The situation
with Lucas. Loss of your husband, your children who lost
their mother. What has all this done in them? To them?
How have they responded?
S2 (43:29):
Yeah, I have seven children who have lived a very
difficult story already. Um, and we have a lot of
conversations about that and about owning our stories. And we
have a choice with what we're going to do with
our stories. We can wallow in self-pity and, um, talk
about how unfair it is, or we can rise up
(43:52):
and we can do something good with our stories, and
we can trust that God has a plan and we
can move forward in obedience. And I've seen every single
one of my children use their story in a remarkable way.
They see other people, they help other people. They they
see disabled adults. They're not fearful of disabled children. Um,
(44:13):
in fact, two of my kids actually live, um, near Lucas,
and they volunteer for ministries with disabled individuals. And I'm
just I'm so incredibly proud. I mean, they could have
gone so many ways with their very difficult stories. And, um,
(44:34):
they have all become remarkable human beings who, who really
see and serve other people.
S1 (44:39):
Um, there's one in the documentary. There's one young woman
who is speaking softly, and you realize that she's it's
two in the morning, and she says, this is the
only time I get to myself. And then she says,
through her tears, she says, I wouldn't trade it for anything.
I can still smile because there are happy moments and
(45:00):
that's the truth. The sweet and the salty are there
at the same time. The hard stuff. Absolutely. But there's depth. There's.
There's real life in the middle of it. And Jess,
I can't. We're already at the end. I had one
caller who was my elderly mom is taking care of
her 50 year old brother who had a stroke. How
(45:22):
do we find someone to give her respite or help
to that care? Does any answer pop up in your mind?
What would you say to somebody asking that question?
S2 (45:33):
I would say, first of all, just be really open
and vulnerable about your needs. Maybe send out a couple
of texts to some trusted friends or neighbors or church
members and just ask. I'm a big believer in throwing
an arrow at the board and see if something sticks.
You know, I think people are often willing to help,
but they can't help if they don't know?
S1 (45:55):
Yes. And they don't know what to do. And they said,
if there's ever anything we can do or I'll pray
for you, you know, and those are all good things too.
But maybe that's one thing that can happen. Uh, Eddie,
I hope that that helps you today. Jess, great to
get to meet you. Thank you. Give your husband, Ryan,
and all the kids a big hug and, uh, come
(46:15):
back and see us again real soon, okay?
S2 (46:17):
Yeah, I'd love to. Thank you.
S1 (46:20):
That's. Jess. Ronnie. Ronnie highly recommend her devotional caregiving with
grit and Grace. You can find it. We have a
link right there at Chris Fabry Live. More about her
links to that documentary unseen. Don't miss that one either.
And come on back tomorrow. Doctor Gary Chapman is going
to join us at the back fence. Chris Fabry Live
(46:42):
is a production of Moody Radio, a ministry of Moody
Bible Institute.
Welcome to our Tuesday edition of Chris Barrie Live. And
an important conversation for a group of people who feel unseen.
Our guest today has written about the struggles of being
a caregiver for her son, also a caregiver for her
husband when he was diagnosed with a tumor. And what
I see in her life, her writing in the documentary
(00:26):
that she helped create, is this phenomenon that we have
talked about time and time again, that the wound, that
one person experience becomes a place of healing for others.
When you are a good steward. Her name is Jessica
or Jess. Ronnie. You have to hear her story. And
(00:47):
if you are a caregiver and you feel exhausted today
and you try to project the image that you're fine,
you're doing well, but you're not. Friend, you are not alone.
And today's program is especially for you. And if you're
not a caregiver, get a little closer to the radio today.
My guess is you want to help others, but you
(01:08):
don't know what to do. So before we even start
the conversation, I have five words for you. Are you
ready for these? When you encounter a family that has
a child with special needs, five words. Here they are.
Do not turn your head. We're going to dig more
(01:29):
into that today at the radio backyard fence. Let's get
going first with a thank you. It's always good to
be thankful. Thankful for Ryan, who's doing everything technical. Tricia
is our producer. Lisa's in the chair today. Look, Deb Solomon,
we've called in the A team to help us out.
If you call us today, Deb will be answering your calls.
I can feel it in my bones. Today's program is
(01:49):
going to be a lifeline for somebody, a life preserver.
At least that's my prayer. You're going to hear someone
who sees you, who understands your struggles because she lives there.
But there are a lot of people listening who are
not caregivers, who don't have a spouse dealing with dementia, perhaps,
or a disabled child. And I'm hoping this conversation will
(02:12):
turn a light on your in your head about what
others are going through. And we are able to have
a conversation like this because somebody like you called or
clicked through and gave a gift of support to this program,
and I want to pause and just say thank you
for doing that. One of the primary reasons that Moody
Radio exists, and this program as well, I believe, and
(02:34):
makes an impact in people's lives, is that it's a
ministry that introduces you to life changing resources and materials
and encouragement. So I want to challenge you today to
be the person who says, I want this to continue.
Give a gift of any size. Or you can give
a monthly gift at the website. Or call 86695. Fabbri. Ah.
(02:57):
Thank you. This month is the book by Doctor Gary
Chapman who's going to join me tomorrow. A book titled
Your New Life with Adult Children. I know a lot
of people are in that season and have some struggles.
This is our way to say thank you for going
the extra mile to support us to do that today,
if you can. (866) 953-2279 or go to Chris Fabry Live.
(03:21):
Scroll down and you'll see how to be a friend
or partner right there. Thank you for your support of
the radio backyard fence. All right. Jess. Ronnie Ronnie is
an listen to this author caregiver advocate, podcast host of
coffee with caregivers. Associate producer of the documentary Unseen How
(03:41):
We're Failing Parent Caregivers and Why it Matters. She holds
a master's degree in education. She is the founder of
Hope farm, a residential home for disabled adults, and the.
If that's not enough, the executive director of the Lucas Project,
which is a nonprofit dedicated to serving parent caregivers with recognition,
respite and resources. She's written several books as well, including
(04:06):
caregiving with grit and Grace. Jess and her husband, Ryan
live in Holland, Michigan, the land of No Left turns
and have eight children, so she's exhausted today for one
reason or another. Jess, it's great to have you with
us today. How are you doing?
S2 (04:22):
I'm doing well. Thanks for having me.
S1 (04:25):
And you can tell I've been to Holland, Michigan, can't you?
S2 (04:27):
I can tell, yes. You accurately described our land.
S1 (04:32):
I said those five words. Do not turn your head.
And that comes directly from the documentary unseen, which is
just excellent. It brings you right into your world and
to the world of a lot of people who are
giving care to disabled children or children with special needs.
Why is that important? Do not turn your head.
S2 (04:56):
It's important because it's time that we're seeing, um, as families,
as disabled children, as disabled young adults. You know, so
often I hear from people and even pastors as I'm
chatting with them about how they could serve families like ours.
And they'll say, I, I don't see these families. I
(05:17):
don't see them in our communities or out and about.
And my answer to that is, of course, you don't
see them because the world isn't made for families like ours. Um,
it's not accessible, it's not accommodating. And because it's so
challenging as a profoundly disabled child begins. Begins to age
(05:37):
like my Lucas, who is primarily non-verbal and would scream
when he needed something and become slightly aggressive and have
behavioral challenges. We just get to the point as families
where we're just more comfortable staying home, And so we
isolate ourselves and, um, and we stay home. And depression
breeds in isolation. And that's not good for anybody. It's
(06:00):
not good for us, the caregivers. It's not good for
the child with disabilities, and it's not good for society
at large. Not to be aware that families like ours exist.
S1 (06:12):
So Lucas and the documentary is 16 and I don't
know when that was created. Is he still 16 or
is he 17, 18?
S2 (06:20):
No, he's 20 now.
S1 (06:21):
He's 20. Okay. Got it.
S2 (06:23):
Yeah.
S1 (06:24):
So we caught him right in in that vulnerable state.
And and that's one of the most haunting things about
the documentary is you hear his screams, cries, banging the
the wall and you start to feel what you experience
every day. And your children and your husband too. Right.
S2 (06:46):
Mhm. Yeah. It's hard for me to even watch the
The documentary. It brings me right back to that place
of PTSD. You know, they often do compare families like
mine as we walk through these very challenging experiences as
our children age to that of similar experiences of war vets,
(07:08):
because it is, um, you live in this heightened state
of fight or flight for years on end. I mean,
I slept with a baby monitor beside my my head
for 20 years because Lucas didn't sleep well. And I would,
you know, wake up throughout the night to screaming or, um,
as he began to go through puberty, we had a
(07:29):
lot of aggression and that even turned into lashing out, um,
against his siblings or against us. And so we had
to set up our home in such a way where
everybody could stay safe, um, including Lucas. So we did have,
you know, boundaries in place to try to ensure that
everybody could lead as normal as a life as we
(07:53):
could provide for each member of the family.
S1 (07:56):
So you were seven months pregnant when the doctor, when
you went in for an ultrasound and the tech went
out and said, be right back. You know, and you
knew something was up, right?
S2 (08:08):
I didn't really I was 20 weeks, actually. It was
my 20 week ultrasound appointment. And I was very naive.
I had a very healthy one and a half year
old back at home. I was young and healthy and
never crossed my mind that there would be something wrong
with this pregnancy. And she said, I'll be right back.
I have to go get the doctor, and still didn't
really cross my mind until the doctor came in and
(08:30):
started saying, you know, um, this this baby experienced a
stroke in utero. There's very little hope. You're young and healthy.
I would suggest you terminate and try again. Um, these
fetuses just aren't supposed to make it. And that's when
my life changed forever, honestly. I mean, that was the
day I became a forever parent caregiver.
S1 (08:54):
Any regrets?
S2 (08:56):
No. No. Absolutely no. Um. Being Lucas's mom has changed
me in the most remarkable ways. Um, God has used
that experience. Like, I could get choked up talking about it. And, um,
you know, I always thought Lucas needed the healing, but
God used Lucas to heal me of all of my
(09:19):
preconceived ideas about my faith and about other people, and
about what it looks like to, uh, serve others as
Christ served us in his earthly ministry. And, you know,
Lucas has taught me more than any man or woman
behind the pulpit ever has. And for that, I'm extremely grateful.
S1 (09:39):
Yeah. Okay. So that's. You had two. Lucas was your second.
You and your husband, Jason had four children. Right. Okay. Yup.
And at one point, Jason went to the doctor for
a diagnosis. Tell me about that.
S2 (09:59):
Uh, after our daughter Mabel was born in 2007, she
was about six months old. And Jason kept having all
of these weird, um, symptoms. Like, he would become really disoriented.
He lost a ton of weight, like, £20 in a
month or something. Um, he was having vision loss, and
(10:20):
he kept going to specialists. And the specialist kept saying, well,
you have type one diabetes. You just have to get
your sugar levels under control. And this diagnosis just came
out of the blue. I mean, Jason was a tennis professional,
a personal trainer, a gym owner, and he was diagnosed
with type one diabetes, like out of the blue. It
didn't make any sense. And then one night I said
(10:43):
to him, I just need to quick run across town
to town to my dad's house. I'll be right back.
Are you feeling okay? Because he would have good days
and bad days. He was like, yeah, I'm good. And
I pulled into my dad's driveway and my phone rang
and I picked it up and it was Jason. He said,
just call 911 and the phone went dead. So I
rushed back home. Um, entered my home to ambulances and
(11:07):
police cars, and Jason sprawled out on a stretcher. And
right before he passed out, um, he put a movie
in for Caleb, put Lucas in his exersaucer, and put
Mabel in her bouncy seat. And then he seized until
he passed out. And we ended up at the local E.R.
that night where they discovered a baseball sized brain tumor. Um,
(11:30):
and he underwent surgery the next day. It was only
a stage two at that point, so we were told
that we could just watch and wait and see what happened.
And in our minds, we were like, you know what?
I think we've been tested. Lucas had brain surgery, Jason
had brain surgery, and now we're. We're good. Um, and
we were just moving forward in faith that, um, we
(11:53):
weren't going to have to deal with this again for
a very long time.
S1 (11:57):
Yeah, but that's not how the story ended with Jason.
And you're going to hear more about that from Jess
straight ahead on Chris Fabry live. If you go to
the website Chris Fabry Live, you'll see our featured resource today.
I hope you will take advantage of both the documentary
unseen as well as the book caregiving with grit and Grace.
(12:20):
It'll it'll move you. It'll touch you. It'll encourage you
if that's where you are today. There's more straight ahead
on Moody Radio.
S3 (12:36):
Our special guest today is Jess Ronnie.
S1 (12:39):
You can find out more about her at Chris Fabry Live. Org.
Caregiving with grit and Grace is our featured resource. There's
also the documentary unseen. We'll talk more about that coming
up here. But I want to open the phone lines
today at (877) 548-3675. And if you are a caregiver and
(13:02):
you are staring at the radio right now because it's
eerily similar, what Jess is describing, it's not exactly the
same as what you're going through, but you're feeling a
lot of the things that she has felt and that
others are feeling. Would you call and tell me who
you're giving care to and maybe answer this question? Or
(13:24):
you can ask a question too. But the question is
fill in the blank. I wish someone would blank. I
wish someone would blank and answer that question for us
here today at the back fence. I'd love to hear
from you because I think, Jess, your main point here
(13:47):
is to be seen, and part of being seen on
the radio is to be heard. So your voice will
do something today. (877) 548-3675. Now at the end of the
last break then. So Jason, they they took that tumor
out that baseball. Did you say it was a baseball
(14:08):
sized tumor?
S2 (14:09):
Baseball sized tumor. Yep. They they removed that and we
went home just convinced that we wouldn't have to deal
with cancer anymore. Uh, we were told sometimes these cancers return,
but it could be 20 years. And we were just
having faith that that was that was the plan for
for our marriage and for our family. And so much
(14:29):
so that we had another baby. Um, in the middle
of that, I got pregnant, and a couple of months
after we found out I was I was pregnant. Jason
began having all of these symptoms again, and so he
underwent an MRI where they discovered that the cancer had returned,
(14:51):
and this time it had returned as a glioblastoma. And
the doctor looked at me and said, I'm so sorry
to have to share this with you, but the life
expectancy for this type of cancer is typically about 14 months.
And Jason lived for exactly 14 months. He passed away
on August 24th, 2010, one month before his infant son
(15:14):
turned one years old.
S1 (15:16):
Wow. So in the moments then that you heard of
the ultrasound and what Lucas, you know, and special needs,
and this is going to be a lifelong thing. And
then 14 months of caregiving for your husband. You must
have felt like Job in a in a sense. So
(15:40):
when when did the boils going to come and, you know,
that kind of thing because it just sounds like it
was being poured out on you.
S2 (15:47):
Yeah. I was so angry. I mean, I look back
during that period and it was almost like anger was
a fuel that I tapped into to keep myself going. Um,
because by the time Jason passed away, I was a
33 year old widow with four children, six and under,
including one with profound disabilities. Um, and I, I just wailed,
(16:11):
and I often I think of it now as like
Jesus almost in the Garden of Gethsemane, just lamenting and wailing, father,
please take this cup from me. But at the end, literally,
like two weeks before Jason passed away, I just dropped
to my knees and surrender and said, but not my will,
but yours be done. You are God and I am not.
(16:33):
And I do not understand why you would make me
walk such a hard path this side of eternity. But
I will be faithful and I will will obey whatever
you call me to do. And it was sort of
this moment of reckoning between me and the Lord, where
I had to get to this place of complete surrender.
(16:53):
And I did. And two weeks later, Jason entered eternity.
S1 (16:58):
Not only surrender, but also full trust. Because you are
you're poor in your life at that point, and I'm
sure you probably had some folks around who are helping
you with Lucas. But I mean, he is a full
time 24 hours a day, right?
S2 (17:15):
Yeah. And, you know, that's that's an interesting point that
I always, I like to talk about because I had
more help than I knew what to do with when
my husband was going through cancer for three years. Literally,
I had more meals than lawn care and laundry and
house cleaning and gift cards and money and everything, um,
(17:37):
for about three years. But in raising a profoundly disabled
child for 20 years, there's been very little help, um, in,
in that journey. And I think I've processed and really
thought about this a lot. And I think as human beings,
we we like short term. Um, that's why we go
on these short term mission trips, even. We like to
(17:59):
go and help and feel good and take selfies, and
then we get to go back to our normal lives.
And when somebody has a child that is disabled forever
and they just they don't heal and they actually begin
to get more difficult and more challenging and there's like
no end in sight. I don't really know that we
(18:21):
know what to do with that. Um, and so just
processing that and really encouraging people to see those families
with those children because they need just as much help
and help and support as the family who is walking
through that cancer journey with their husband or loved one.
S3 (18:41):
That's what I picked.
S1 (18:42):
Up in the documentary, especially when you're at the park
and you've got Lucas is there, and then the other
kids and we need to close the loop on the
rest of the. There's, there's a there's another part of
the family that we didn't get to yet. We'll get
to that. But Lucas is there, and he wants to
go get in the car, and he can't speak, but he.
(19:05):
You can tell, you know, that he wants to get
in the car and you say, well, yeah, Lucas, you
got to go on the other side. So, okay. He
goes on the other side. There is just this sweetness
to him that that comes through, even though, you know,
the flare ups and all of that, when he goes
into the other side of the car and you get him,
get him in and seatbelts and all that, but that's
(19:28):
where you look at the camera and you say, there's
so many people who I just wish somebody I wish
someone would. That's where I came up with the question.
I just wish someone would look at us and would
see us and not turn away. Right.
S2 (19:46):
Mhm. Yeah. It was that that question you opened with. Um,
I knew the answer immediately what my answer would be.
I wish someone would help with Luke. That was, that
was my answer for 20 years. Um, because we, we
desperately needed help with Luke and it was very challenging
to find that help.
S1 (20:07):
Yeah. And now the group home that you started is
where he lives at 20. He lives there full time, right.
S2 (20:16):
Mhm. Yep.
S1 (20:18):
So that has been has how how has that uh
has that relieved you. In some ways.
S2 (20:27):
It has I, I am exactly one year out. So
he moved into that home February 1st. And I'm still
in this cycle of grieving, processing, accepting, um, my whole
identity for the past 20 years. I mean, all the
(20:47):
things I've created, the thread was always Lucas, and I'm
trying to figure out what to do with all this
space that I have now. It's really uncomfortable. I'm sure
I'll fill it somehow.
S3 (21:00):
Um, well, isn't that the surrender.
S1 (21:01):
That you were talking? And the trust is? This idea came,
and it's giving life to Lucas. You know, he's he's
able to live there, but that is a surrender.
S2 (21:14):
Oh, absolutely. I mean, that was the whole process. That
was like a four year process of getting me to
that point. And even the Lord convicting me and saying, um,
you know, if you don't trust me to care for Lucas,
Then this identity that you have that's wrapped up in
its care has almost become idolatry. Yeah. Um, and.
S1 (21:37):
That's the sneaky little thing. You know, the enemy can
use even the good stuff and turn it around, turn
our hearts into to an idol. Can it?
S2 (21:45):
Yeah, absolutely. Yep, yep.
S1 (21:48):
All right, so I wish someone would. Uh, Maggie's in Vermont. Maggie,
what do you say?
S4 (21:55):
Hi, Chris. You know, just listening. I feel like identity
is huge. My daughter, um, was studying for a PhD
in Berlin. She contracted Covid. It kind of knocked her
on her feet, and she came home to rest and recover.
It turned into long Covid. She continued to decline to
the point where she needs a wheelchair. She needs her
(22:15):
food pureed and brought to her. Noon three and seven.
And on one hand, I have this beautiful, intelligent, fun
35 year old and on the other hand, I have
someone Who needs to be fed at noon, three and
seven and needs the food to be prepped and brought
to her. And I know initially it was hard to
(22:39):
surrender because I was in mom mode, you know, let's
see the doctor. Let's get an answer. Let's fix this.
Let's see what we can do to, you know, help
restore Sarah to, you know, her former quote unquote former self.
And really, what I have slowly been shown is that
(23:00):
she doesn't need someone to fix her. She from me,
she needs mom, and she needs encouragement and she needs support. And, um,
that that transition is still happening because frankly, there are
times when I just want to jump in and and
help her. But, um. Yeah.
S5 (23:21):
So it's a daily fight.
S1 (23:23):
What I hear you saying is it's a daily fight,
I believe. Help my unbelief. Just like the man said
to Jesus, I believe that he can do this, I believe.
And Jess, you must identify with what she's saying.
S2 (23:37):
Oh, absolutely. It is a daily fight, and I don't
know that we ever really arrive. Unfortunately, it's it's that,
you know, strengthening of our of our faith. And, um,
it's bringing it to the Lord every single day, and I,
I still do that. I bring it to the Lord
and I, you know, I surrender in my weakness and
(23:58):
ask for his strength.
S5 (24:00):
Yeah.
S1 (24:01):
Maggie, I didn't give you a chance to answer the question, though.
I wish someone would. Is the answer. Uh, figure this
out and tell me the answer to it.
S4 (24:10):
Well, no, the answer really is tell me whether this
is my new normal. Or is there hope that Sarah
will regain some level of her previous self? And I
think I've come to the place of being okay if
it's her new normal. And I read an article in
(24:30):
the New York Times just last week called I Love you.
Please find someone Else. I urge everyone who is taking
care of someone with a chronic illness. I wept when
I read it because you're right. We we we want
to be seen and heard. And I have a beautiful faith,
family and circle of friends. But it's hard when I
(24:55):
don't even understand what I'm going through.
S5 (24:57):
Right. There's.
S1 (24:58):
That was one of the questions that I wanted to
get to. And we're going to do that today. And
that is. How's the church doing with this? Because we
ought to be doing really well, and we ought to
be seeing a lot more people than those in the
general population, you know, who aren't believers. We ought to
be doing better. And I want to hear what Jess
has to say about that. You can find out more
(25:19):
about Jess Ronnie at our website. Ronnie is her name.
Caregiving with grit and Grace is just one of the
books that she's written that has kind of come out
of this crucible, as well as the documentary unseen. We
have a link to that as well. Just click through
today's information at Chris Fabry Live Unseen How We're Failing
(25:42):
Parent Caregivers and Why it matters. More of your calls (877) 548-3675.
Straight ahead.
S5 (26:02):
We're talking about.
S1 (26:03):
Caregivers today on Chris Fabry Live. And I sure hope
this is a conversation that encourages you. I look forward
to some email. This is exactly where I am. How
did you know that? Well, I don't, but God knows
where you are. He sees you. There's a ministry called
Care Net that sees a lot of different people they
are known as a pro abundant life ministry, which means
(26:26):
they are fully committed to the unborn, while at the
same time fully committed to the women and the men
who are making decisions about that unborn child. They want
everyone in that equation to flourish, but they also want
to encourage you wherever you are in your journey. So
they developed a 365 day Abundant Life devotional series, absolutely free.
(26:49):
You can get it online if you go to. Org.
Click the green net link and the stories in that
devotional will encourage you. They share from the front lines
of Care Nets ministry, and give specific ways to pray
for women and men who are making those decisions, as
well as for their front line workers to have wisdom.
(27:11):
When you read these stories of the way that God
has orchestrated the saving of lives, I think it's going
to motivate you to pray. So access your free 365
day Abundant Life devotional series by clicking that Green Connect
link at Chris Fabry Live. Chris Fabry live.org, where you'll
also find out more about our guest today, Jess Roney.
(27:34):
And the question I asked you to fill in the blank.
I wish someone would. Liz is on the line from Cleveland, Ohio. Liz,
tell me why you called.
S6 (27:44):
Oh hi Chris. I wanted to thank you for this
interview today. I'm a clinical mental health counselor, and I'm
just very grateful for this because there is not enough
awareness of the needs of these families. I have 50
clients in. Only one of my clients had a similar situation.
Her teenager was severely autistic, non-verbal, and she mentioned to
(28:07):
me that she thought she had trauma from his needs. Um,
so this is something I never learned about in graduate school. Um, the,
you know, the things the families go through. So after
hearing today, I just wanted to wanted to say thank
you so much, because I think this is an area
in mental health we could use more training in, and
just to try to be able to help people with
(28:28):
all of these, these issues with the isolation and with
even not seeing them in the churches. Yes. You know,
I haven't seen this in my private practice.
S1 (28:37):
Bingo. Bingo. Liz, I'm so glad you called. And I
want to send you to that website because they have
a newsletter that you can see as well as you
can sign up to see the the documentary, I think
February 21st. It's it's free during that week because it's
National Caregiver Day or week. Um, so hang on, we'll
(28:59):
make sure you get that info. But Jess, what do
you say to somebody in the mental health, uh, in
the care field who says, you know, I don't know
about this?
S2 (29:10):
Yeah, she's right on. Um, which is why we created
the the documentary. Uh, because that's the response we get
from most people, um, is I didn't know these families
existed or I didn't realize it was so challenging. And
I think part of that perception is because, well, your mom,
you know, you're just supposed to take everything that comes
(29:31):
with being mom. And that's true to an extent. But
in raising a child like Lucas, you know, most people,
most moms or dads also look forward to the day
when that child eventually, you know, flies the coop and
gains a little bit more independence. Hopefully, God willing, and,
you know, starts to establish their own life outside of
(29:55):
mom and dad. And when you have a child like Lucas,
that doesn't happen. And there is no flying the coop.
There are there are no other coops available where that
child could even go. Um, and in fact, that child
becomes more and more challenging as the caregivers mom and
dad become more, um, as the, as mom and dad age.
(30:17):
And that makes it just extremely challenging for everybody involved.
And I just wholeheartedly believe that we do need more
awareness around these these subjects and these families.
S5 (30:30):
Yeah. So go to the website again.
S1 (30:32):
We have it linked right there. Click through today's information.
You'll see more about Jess. And there's a way to
sign up for the newsletter to go to the unseen website.
Just click that green link. Oh we got green links everywhere.
We got chris.org. We also have the book caregiving with
grit and Grace right there. I didn't mention the there's
(30:56):
a fellow named Ryan who at the at the same
time that your husband was going through the latter days
of what was happening to him with his cancer and
the glioblastoma, his wife was going through a similar thing. Right.
Tell me about him.
S2 (31:15):
Yes. Um, this is where the story turns. Um, and
it actually begins at Jason's funeral, when Jason's mom pulled
me aside and said, Jess, I just want you to
know that I'm praying that God sends you your next husband.
And I was, like, sort of floored and didn't really
know what to say. Um, but she was she was
(31:38):
on the right track because three months later, I was
checking my blog that I had kept updated during Jason's
cancer journey, and a stranger from Pennsylvania left a comment
on my blog. And she just said, Jess, I have
no idea why I'm asking you to do this, but
there was a young widower in Oklahoma. He lost his
wife to brain cancer four days after Jason died. He
(32:00):
has three young children and he's not doing very well.
And I just think you could be a source of
encouragement to him. So I found his blog and left
a comment, and woke up the next day to an
email from Ryan. And that led to numerous emails and
phone calls, and we eventually met and we were married
within the year.
S5 (32:20):
Wow.
S2 (32:21):
So yeah, long story short.
S1 (32:25):
That is that is a very, uh, romantic story and
long story. But Ryan had both eyes open when coming
into this, and he's part he's a great part of
that documentary. He knew what he was signing up for
with Lucas, at least from what you know. He didn't
(32:46):
know exactly, but he he came in to say, no,
I'm going to be part of this, right?
S2 (32:54):
He did. And he'll tell people he's asked this question
a lot. I find it kind of humorous. I'm never
asked what I thought about taking on his three children,
but he's always asked what he thought about taking on
my four children. Um, and he just he he'll say,
I fell in love with Jess. And it was a
was a package deal. And it was. He was just
(33:15):
being obedient to the Lord. Um, and, you know, Lucas
was young. He was five. So there was he was
still very adorable and manageable. And neither one of us
really knew what those teenage years were going to look like.
You know, ten, 11, 12 years down the road. Um,
it's probably good that we didn't know. Uh, but, like, like,
(33:39):
people still did help us when Lucas was young. Um,
it just became very, very challenging the older he got.
S5 (33:47):
Yes.
S1 (33:48):
And, and in the documentary, you talk about, you know,
how do you have a job? You know, you can't
work full time. And then an employer, you know, if
you have to take six weeks off because your son's
going into the hospital and you don't know how, you know,
it's very hard. So you've worked it out so that
he has a job where he can work basically at
(34:11):
home and make this happen. But there's a lot of
different things. One of the things that really surprised me
was how few opportunities there were or choices there were
for like a camp, you know, for for Lucas and for, uh, to,
for him to be able to and all the other
(34:32):
kids could, could do that, you know, for a week.
But there's nobody because of his situation. There's no one
offering that or you couldn't find that. And that's what
parent after parent after parent said that you were talking with.
That's a struggle.
S2 (34:50):
Yeah, it is a struggle. Um, I found that a
lot of ministries and nonprofits, uh, often serve the moderate or,
or mild, uh, disabilities, but they don't really open their
doors often to those with more severe disabilities. Or if
the incontinence factor is part of the of the equation.
S1 (35:11):
Catherine's in Tampa, Florida. Catherine, why did you call today?
S7 (35:15):
Hi. Yes, hi. Thank you for taking my call. Um,
I was calling because I have I have, um, two
adult children. Well, they're young adults, you know, with me and. Yes, um,
I remarried in 2010, and my husband had a stroke
in 2017. So I took care of him for the
(35:38):
next three years, and he passed away in 2020. So
I'm back again being a single mom and, um, just
listening to what Jess was saying and in reference to
what do you do when you get older? I'm 71
and I don't have anybody. And and in response to
(35:59):
answering your question, one of the questions, one of my
answers would be just to have someone, some young, um,
gentleman or young lady be able to take my kids
out for a couple of hours just to relieve that.
And it would be good for them too. So they're not,
(36:21):
you know, at home all the time either. And, you know,
just to be able to, to go out and do
things and trust people that they're with. And it's very hard.
You know, we go through the system and we go
through people, but, you know, to let them go with
them in their car. And and it's very hard. It's
(36:42):
very hard. And, and one talks more than the other.
My daughter has down syndrome and my, my son has
just developmental disability. Um, for them, for me to get
feedback when they come back and you hear the stories of,
you know, what these companions or caretakers do. And so,
(37:02):
you know, I can't just let them go. It's hard.
S1 (37:06):
So there's so much, Catherine. There's so much of what
you just said that is reminiscent of what I saw
in the documentary and what you deal with in caregiving,
with grit and grace. And then that big question. Well,
I'm getting older. What is going to happen? That's one
of those questions that that that there's no one you
(37:27):
can talk with about that if you're a single parent.
Now let me take our final break. I'll get Jess
in here and she can respond to your question. But
do you see the value of hearing Kathryn's voice, seeing
you're not alone? You are seen. We're going to talk
more about that. Go to the website Chris Fabry live.org.
(38:00):
We've been talking with Jess Ronnie today at Chris Fabry
Live at the website Chris Fabry You'll see a link
there to her book. It's a devotional. There's probably somebody
in your life, if you're not a caregiver, somebody who
needs the devotional caregiving with grit and grace and all.
(38:21):
Anybody listening to my voice right now, watch the documentary
Unseen How We're Failing Parent Caregivers and Why it matters.
There's a green link right there. You can sign up
for the newsletter and see that absolutely free. But you
have to wait until I think the week of the 21st.
But when I heard Catherine, you heard Catherine's voice kind
(38:43):
of break when she said, I just wish someone would
come and take my kids out to be able to
get out of the house to give a little bit
of relief. And I think you heard the same thing
that I heard the exhaustion, the all of the questions there.
What do you say, Jess?
S2 (39:04):
Yeah, I mean, I was her for many, many years
and it's a really challenging place to be in. And
I guess, um, for me, it was learning to be
honest with the Lord about my fears and about my needs,
and then learning to also be honest with others, um,
about my needs. I know as caregivers, we are really
(39:25):
good at, um, at pretending like everything's fine and we
can handle everything on our own, and sort of adopting
this martyr caregiver syndrome where nobody will care for our
loved ones like we will. And I would just really
encourage people to begin to let the Lord soften your
heart and, um, and also relieve your fears so that
(39:48):
other people can step in and provide that rest and
that respite that you desperately need.
S1 (39:57):
There's something that Ryan, your husband said that really hit me.
He said, I don't make five year plans anymore, you know.
And if you if you've schematic your life out, it's like,
we're going to do this, we're going to do that.
Read the book of James and you see how that
can fall apart. But he said, I know I'm taking
it a day at a time, and you really have
(40:19):
to in a lot of ways, right?
S2 (40:22):
Yeah. He doesn't make five year plans. His wife does. Um,
not really, but you do learn to live. I think
losing our spouses at such a young age and going
through so much trauma at such a young age, as
challenging as it was, can also be a gift because
you really do learn to live in the present and
(40:44):
to see and value each day as a gift. Um, and,
you know, that was sort of the sentiment behind what
he said was we just don't know. And so we
we strive to live in the present and to find
joy in the present. And really, the Lord is only
found in the present. Um, and so it's really working
(41:06):
that muscle to learn to be intentional about staying present.
S1 (41:11):
I said I was going to ask you this question.
The church. How are we doing in the church with caregivers?
S2 (41:19):
Um, um, specifically caregivers of children with profound disabilities. I
think we're really, really missing the mark. Um, I see
a lot of programs that are geared towards more moderate
or mild disabilities, but those families with the more severe
children who really do need a separate space. Um, so
(41:44):
that they can get some respite and worship without their
child screaming or grabbing them or being aggressive or those
spaces are not readily available. Um, and it kept us
out of church for many, many years in rural Tennessee
because we couldn't find a church that could accommodate Luke,
and we would often hear, well, just bring them into
(42:06):
the sanctuary and he can worship with you. And that's
it's just not worship for our family with him screaming
and pulling my hair and, you know, saying, all done. Bye.
See you later at the top of his voice, like
we need a separate space. And, um, I've talked to
different pastors too, over the years and about, you know,
being accommodating towards families like this. And I'll get a response,
(42:31):
something like, well, we have the wheelchair ramp or we
have the elevator, and those are great. And they do
make your your sanctuary accessible. However, once again, we're not
making it accessible towards the more severe population. And that
may include, you know, incontinence or some elopement issues or
(42:52):
some aggression or nonverbal. And I think that fear is
what keeps a lot of churches from diving in, but
I would say there are a lot of people that
could really help. Work through those fears and help you
put structures and tools in place that it would. Become
a successful endeavor for everyone involved.
S1 (43:13):
What has this done to your kids, Lucas? The situation
with Lucas. Loss of your husband, your children who lost
their mother. What has all this done in them? To them?
How have they responded?
S2 (43:29):
Yeah, I have seven children who have lived a very
difficult story already. Um, and we have a lot of
conversations about that and about owning our stories. And we
have a choice with what we're going to do with
our stories. We can wallow in self-pity and, um, talk
about how unfair it is, or we can rise up
(43:52):
and we can do something good with our stories, and
we can trust that God has a plan and we
can move forward in obedience. And I've seen every single
one of my children use their story in a remarkable way.
They see other people, they help other people. They they
see disabled adults. They're not fearful of disabled children. Um,
(44:13):
in fact, two of my kids actually live, um, near Lucas,
and they volunteer for ministries with disabled individuals. And I'm
just I'm so incredibly proud. I mean, they could have
gone so many ways with their very difficult stories. And, um,
(44:34):
they have all become remarkable human beings who, who really
see and serve other people.
S1 (44:39):
Um, there's one in the documentary. There's one young woman
who is speaking softly, and you realize that she's it's
two in the morning, and she says, this is the
only time I get to myself. And then she says,
through her tears, she says, I wouldn't trade it for anything.
I can still smile because there are happy moments and
(45:00):
that's the truth. The sweet and the salty are there
at the same time. The hard stuff. Absolutely. But there's depth. There's.
There's real life in the middle of it. And Jess,
I can't. We're already at the end. I had one
caller who was my elderly mom is taking care of
her 50 year old brother who had a stroke. How
(45:22):
do we find someone to give her respite or help
to that care? Does any answer pop up in your mind?
What would you say to somebody asking that question?
S2 (45:33):
I would say, first of all, just be really open
and vulnerable about your needs. Maybe send out a couple
of texts to some trusted friends or neighbors or church
members and just ask. I'm a big believer in throwing
an arrow at the board and see if something sticks.
You know, I think people are often willing to help,
but they can't help if they don't know?
S1 (45:55):
Yes. And they don't know what to do. And they said,
if there's ever anything we can do or I'll pray
for you, you know, and those are all good things too.
But maybe that's one thing that can happen. Uh, Eddie,
I hope that that helps you today. Jess, great to
get to meet you. Thank you. Give your husband, Ryan,
and all the kids a big hug and, uh, come
(46:15):
back and see us again real soon, okay?
S2 (46:17):
Yeah, I'd love to. Thank you.
S1 (46:20):
That's. Jess. Ronnie. Ronnie highly recommend her devotional caregiving with
grit and Grace. You can find it. We have a
link right there at Chris Fabry Live. More about her
links to that documentary unseen. Don't miss that one either.
And come on back tomorrow. Doctor Gary Chapman is going
to join us at the back fence. Chris Fabry Live
(46:42):
is a production of Moody Radio, a ministry of Moody
Bible Institute.
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Have you ever wondered what life might be like if you stopped worrying about being wanted, and focused on understanding what you actually want? That was the question Hope Woodard asked herself after a string of situationships inspired her to take a break from sex and dating. She went "boysober," a personal concept that sparked a global movement among women looking to prioritize themselves over men. Now, Hope is looking to expand the ways we explore our relationship to relationships. Taking a bold, unfiltered look into modern love, romance, and self-discovery, Boysober will dive into messy stories about dating, sex, love, friendship, and breaking generational patterns—all with humor, vulnerability, and a fresh perspective.
On Purpose with Jay Shetty
I’m Jay Shetty host of On Purpose the worlds #1 Mental Health podcast and I’m so grateful you found us. I started this podcast 5 years ago to invite you into conversations and workshops that are designed to help make you happier, healthier and more healed. I believe that when you (yes you) feel seen, heard and understood you’re able to deal with relationship struggles, work challenges and life’s ups and downs with more ease and grace. I interview experts, celebrities, thought leaders and athletes so that we can grow our mindset, build better habits and uncover a side of them we’ve never seen before. New episodes every Monday and Friday. Your support means the world to me and I don’t take it for granted — click the follow button and leave a review to help us spread the love with On Purpose. I can’t wait for you to listen to your first or 500th episode!
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com