March 15, 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 this Building Relationships with Dr. Gary Chapman. 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 Building Relationships with Dr. Gary Chapman.
Featured resource: Caregiving with Grit and Grace: 100 Days of Hope and Encouragement
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Episode Transcript
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S1 (00:00):
If you're a caregiver for a child, a relative, or
a friend, don't miss the help and hope on today's
building relationships with Doctor Gary Chapman.
S2 (00:09):
It's just amazing to me what God has done with
his story and how there has been so much beauty
from ashes. When when initially I thought, you know, my
situation was completely hopeless.
S1 (00:27):
Welcome to building relationships with Doctor Gary Chapman, author of
the New York Times bestseller, The Five Love Languages. The
demands of caregiving can often leave you feeling exhausted, isolated, stressed,
or unappreciated. Today, Jessica Rainey shares her caregiving story and
how her perspective has been transformed by grace.
S3 (00:48):
Our featured resource at Building Relationships US is Jessica's book
caregiving with grit and Grace. A mom discovers meaning, strength,
and gratitude as a caregiver. You can find out more
at building relationships.us. Gary is a pastor. You have seen
the silent struggles of caregivers and the difficulties they face,
(01:10):
haven't you?
S4 (01:11):
Absolutely, Chris. You know, I deeply, deeply admire those people
who are caregivers because it's 24 hours for many of them.
You know, if they're in the home and family members,
it's a 24 hour situation. So, yeah, no, there's a
lot of lot of struggle there. But hopefully and thankfully
when God gives grace, people never, ever regret caring for
(01:34):
family members, you know? And of course there are people.
That's their lifestyle. I mean, that's what they do. They
work in that, you know, as caregivers. So I'm excited
about our conversation today.
S3 (01:44):
Let me introduce our guest, Jess. Ronnie is an author, caregiver, advocate,
podcast host of coffee with caregivers and associate producer of
the documentary Unseen How We're Failing Parent caregivers and why
it matters. She holds a master's degree in education. She's
the founder of Hope farm, which is a residential home
(02:05):
for disabled adults and the executive director of the Lucas Project,
a nonprofit dedicated to serving parent caregivers. Jess and her husband, Ryan,
live in Holland, Michigan with their eight children and are featured. Resource.
If you go to Building Relationships us, you'll see it
right there. Caregiving with grit and Grace a mom discovers meaning, strength,
(02:27):
and gratitude as a caregiver. Again, go to building relationships.us.
S4 (02:33):
Well, Jess, welcome to Building Relationships.
S2 (02:36):
Yeah, I'm excited to be here. Thanks for having me.
S4 (02:39):
It seems to me that the ministry you have is
directly related to a lot of the pain and struggle
you've experienced in your own life. Is that true?
S2 (02:49):
Yeah, absolutely. Um, you know, Lucas, my son, who is
profoundly disabled, has always been the thread to everything I've
really created for the past, um, 12, 15 years. From
the nonprofit to the books to the podcasts to the documentary.
It's all been to not only bring awareness and resources
(03:10):
for other people, but it's been to create awareness and
resources for our family as well.
S4 (03:16):
How old is Lucas now?
S2 (03:18):
He's 20.
S4 (03:19):
20? Yeah. Well, before we get into your story, tell
us what inspired you to write caregiving with grit and Grace.
S2 (03:29):
Yeah, that's that's kind of a funny story. My husband
actually said to me for years, you should write a
devotional book for caregivers. And I said, I don't know
that I'm the right person to do that. It just
I didn't feel equipped, I guess, um, to minister to
caregivers in such a profound capacity. And he finally convinced me,
(03:54):
along with my agent, to write a proposal. And I did.
And a publisher loved it and offered me a contract.
And that's how caregiving with grit and Grace came about.
And it's so funny. I actually wrote that book as
we were creating a group home for Lucas, and it
(04:15):
almost became like God was downloading a love letter to
a grieving mother as I prepared to release my son
to the care of others. And it in turn has
become a love letter to caregivers around the world.
S4 (04:29):
Yeah, sometimes God does things we don't anticipate, right? Yes.
S2 (04:35):
Sometimes that's a story of my life.
S4 (04:38):
Yeah. And what do you hope caregivers who are listening
today take away from our conversation?
S2 (04:46):
I really hope that they're encouraged to reframe their Perspectives
in regards to caregiving. I know it's often seen as
monotonous and mundane and, um, you know, grunt work that
we have to do. And I would just really encourage
caregivers to reframe their perspective and see it as holy work, really,
(05:08):
the holiest work we can do this side of eternity
is caring for someone who cannot care for themselves. And
in fact, through our caregiving, we are becoming more like
Christ who came to earth with the sole purpose of
caring for us, our physical needs, our mental needs, our
spiritual needs, and so to reframe our perspectives and see
(05:28):
it in light of becoming more Christ like has just
been really a game changer for me and my personal
caregiving journey as well.
S4 (05:36):
Yeah, I greatly admire caregivers. I mean, I just I
stand in awe sometimes as I see, you know, what
you and others you know, deal with on a regular basis.
So you dedicate the book to your son Lucas, who
you thank for teaching you what it truly looks like
to lay down your life for another. What happened with Lucas?
S2 (05:59):
Uh, Lucas was diagnosed with a stroke in utero at
my 20 week ultrasound appointment. We were told that there
was very little hope. And it was suggested that we
terminate and try again. And the doctor's words. You're young
and healthy. You won't have any problems getting pregnant. Uh,
it's just nature's way. These fetuses aren't supposed to make it.
And my husband, Jason, and I instead put Lucas in
(06:22):
the Lord's hands and trusted that his will would be done.
And Lucas came out screaming with life four months later. Uh,
he underwent brain surgery, spent two weeks in the NICU,
and then we were handed our baby with kind of
an umbrella diagnosis of special needs and told good luck.
And Jason and I just looked at each other in awe.
We had gone from, there's no hope your baby's going
(06:43):
to die to here you go. Good luck. And so
we just went home elated that we were going home
with our miracle baby. I did not grieve one single
bit that Lucas might have any additional needs or disabilities.
I was just thrilled to be going home with a
live baby.
S4 (07:02):
Yeah. Wow. Wow. Well, I know a lot of caregivers
who recognize the pain, the struggle which you came to
recognize as time went on. How do you come to
grips with the term of the prospect of being a
lifelong caregiver, which is what it's really turning out to
you for you?
S2 (07:22):
Mhm. That was a process. Um, and I don't really
think I came to grips with it until Lucas started
to go through puberty and became aggressive. And we had
behavioral challenges, and he would lash out at me and
at his siblings, and he was incontinent and non-verbal. And,
you know, when he was an adorable little boy, it
(07:44):
was easy to find people to help, even to step in,
you know, with a five or a six year old
who's in diapers. But when that child is 16, 17, 18,
still in diapers and now capable of hurting people, nobody
wants to help anymore. And that's when it became very
apparent to me that this was a lifelong gig that
(08:05):
the Lord had called me to. And I think that's
when I really even began to grieve the fact that
Lucas had special needs and and even grieve the fact
that he wasn't a typical child and began to process like,
what will our future look like with this child?
S4 (08:26):
Well, what advice would you give other parents who are
facing a similar situation to what you faced?
S2 (08:36):
I think it boils down to really one word surrender.
And that is like a daily surrender To the father's
care and trusting his heart not only for yourself as
a parent, but trusting his heart for your child and
for your family, and truly trusting that he is able
(08:57):
to do exceedingly more than we could ever comprehend or
imagine with our stories. When we are obedient and step
into the the plan and the life that he has
for us.
S4 (09:10):
I think a lot of listeners who have never experienced
anything like this, really, it's hard to even comprehend what
that would be like.
S2 (09:19):
Mhm.
S4 (09:20):
Well, Jess, what are the daily challenges of caring for
your son Lucas now at this juncture?
S2 (09:28):
Well, like I mentioned earlier, we actually created a group
home for him and he moved into that home a
year ago, February 1st. So for the past year I've
been really processing and grieving and accepting over and over
again the fact that I'm not his full time primary
caregiver anymore. And so it looks very different than it
(09:52):
did even a year ago. But even, you know, for up,
up for 19 years, up to 19 years, he required
full time care bathing, diapering, um, feeding, getting him ready.
Every morning. I slept with a baby monitor beside my
head for 19 years because he didn't sleep very well
and would wake up in the middle of the night
(10:14):
screaming or, um, creating self injuries by banging his head
against his arm. Um, so just 24 over seven care.
So living like 19 years really in a form of
survival mode as a caregiver?
S4 (10:31):
Yeah. I want to ask you a really personal question.
Have you ever felt angry or frustration toward God in
this situation.
S2 (10:43):
Oh, absolutely. Yeah. And especially I feel like I surrendered
much faster during my pregnancy with Lucas. But later on,
as I walked through my husband's three year journey with cancer,
I was extremely angry and could not understand or comprehend
why the Lord would require such a difficult path for me.
(11:09):
With numerous brain surgeries with Lucas and his father and
four young children that I had to care for, I
don't know that I manage those emotions very well. During
Jason's cancer journey, I acknowledged them. God and I wrestled greatly,
I lamented, I screamed, I wailed, and really, only up
(11:31):
until two weeks before Jason passed away did I finally
drop to my knees and surrender and say, okay, I,
I wanted you to take this cup from me. Just
like Jesus pleaded in the Garden of Gethsemane. I don't
want to carry this heavy burden, but you have called
me to carry this, and not my will, but yours
(11:54):
be done. You are God, and I am not. And
from that moment forward, something shifted, and Jason actually passed
away two weeks later. But in that shift, I did
find peace moving forward.
S4 (12:07):
Well, I think sometimes Christians say, well, you should never
get angry with God or frustrated with God. The reality is,
we all do at times when we don't understand what's
going on. But the reality is we're not going to
understand everything that happens in our lives. And somewhere along
the line, we have to come to where you finally came,
(12:29):
you know, and that is accepting the reality and putting
the whole thing in God's hands, even though we don't understand.
So you became a widow with four children. How did
you deal with that? And did you have a support
system that was helping you or. Wow. I mean, I'm just.
I'm just feeling a lot of pain myself as I'm
(12:53):
listening to you.
S2 (12:54):
It was, um, you know, the funny, not the funny thing.
The interesting thing, really? Um, when Jason passed away, there
was finally almost some peace, uh, because I had put
forth so much energy caring for him for three years. Brain.
Brain cancer is a cruel, cruel taskmaster. By the time
(13:17):
he passed away, I missed him deeply. But I did
not miss Jason, who had brain cancer. Our relationship had
definitely shifted from a spousal relationship to a caregiver and
one who needed care, and I devoted myself to him
(13:38):
in his final months, years, and so much so that
I really missed my kids. And so when he he
passed away, I just really dove into being a mom
again and reconnecting with my four young children. I had
four children under seven years old, including Lucas, um, who
(13:59):
was profoundly disabled. And so to not have cancer to
deal with anymore, there was sort of this peace to
be able to focus on my kids again. And I
had a really strong support system for the the three
years that Jason went through brain cancer. And it's always
interesting as I look back and reflect, I didn't cook
(14:22):
a meal or or do my laundry or clean my
house or anything really. For three years I had so
much help as Jason was battling cancer, But then I
compare that to raising Lucas for 20 years, and there's
been very little help. And I think people are just
much more eager to step into those short term opportunities
(14:45):
and help out. And there's something very daunting about those
longer years upon years upon years of raising a child
that they don't maybe know what to do with, or
there's some fear associated with stepping in and helping those families.
S4 (14:59):
Yeah, I can I can see that. How long were
you and Jason married before he passed away?
S2 (15:06):
Uh, 11 years.
S4 (15:08):
11 years? Mhm. Wow. How old was he?
S2 (15:12):
He was 33.
S4 (15:13):
33.
S2 (15:15):
Most of our marriage was just fighting one hurdle battle
after another. Um, it you know, it's interesting to reflect
back on that. Even we we had very little periods
of peace just between Lucas and Jason's constant battles with
brain cancer. Yeah.
S4 (15:36):
Are your other four children all healthy physically?
S2 (15:39):
I have eight children now. Yes. All seven of them
are healthy. Um, yes. And the other three are very healthy.
S4 (15:47):
Okay, well, now you got to tell us how you
got eight children. In due time, it sounds like God
led you to another man.
S2 (15:57):
He did? Um, yes. Very interesting part of the story. Um,
at Jason's funeral, his mom actually pulled me aside and said. Jess,
I just want you to know I'm praying for your
next husband. And that kind of shocked me because I
wasn't in any frame of mind to be thinking about
(16:20):
getting married again. At that point, I was hopeful that
I would get married again. I really enjoyed marriage. I
had a good marriage and I wanted that again in
my life. And little did I know, three months later,
a stranger left a comment on my blog I had
blogged during Jason's cancer journey just to keep the masses updated,
(16:43):
and she was from Pennsylvania and she said, I don't
know why I'm asking you to do this, but I
just would like you to reach out to this widower
in Oklahoma. He lost his wife to brain cancer four
days after Jason died, and he has three young children
and he's not doing very well. And so I found
(17:03):
his blog and left a comment. And I woke up
the next day to an email from this man. And
those emails turned into phone calls, and we eventually met
and we were married in April of 2011. He moved
to Michigan and we adopted each other's children, and we
went on to have an eighth and final child together
(17:24):
in 15.
S4 (17:27):
Wow. Oh, no. Now tell me. I know our listeners
are asking. I'm asking. How long was it from the
time Jason died until you actually got married?
S2 (17:42):
Well, Jason passed away in August, and we were married
in April, so.
S4 (17:46):
Okay.
S2 (17:47):
Whatever that. Whatever.
S4 (17:48):
Whatever that is. All right.
S2 (17:50):
In my defense, and I often say this, I do
move quickly. Jason and I were married 11 months after
meeting as well, so I'm just a very decisive woman, so.
S4 (18:01):
Okay. I hear you, I hear you. Right. Well, you know,
I think sometimes we experience this where now your children
are still young, but where children that are older and
their father dies and their mother marries, you know, within
six months or seven months or whatever and say, wait
a minute, mama, wait a minute, wait a minute. What
are you doing? I've seen that in my counseling, you know,
(18:24):
through the years. Yes, but but there is no pattern,
you know, as to or in time pattern in terms
of when God brings someone into your life and brings
you together. Well, I'm impressed that he moved to Michigan
from Oklahoma. Oklahoma. Is that what you said?
S2 (18:39):
Well, he only lasted two years in Michigan. And then
he said, I can't deal with the snow. So we
moved to Tennessee. So.
S4 (18:46):
Okay.
S5 (18:47):
All right. He didn't he didn't last real long. But
here we are back in Michigan now.
S4 (18:51):
Oh, you're back in Michigan.
S5 (18:53):
Okay. Right.
S4 (18:53):
Well, okay. So being a parent caregiver can give you anxiety,
can bring depression, can bring chronic stress. And you say
in the documentary that your heart races. What do you
do with all these feelings that affect you even physically?
S2 (19:13):
Hum. Yeah. That was that was a battle like I mentioned.
You kind of live in this constant state of survival
mode and I recognized it, I acknowledged it, I prayed
about it. I was honest about my needs, but my
body still was in a chronic state of pain that
nobody could really figure out. And only honestly. Since Lucas
(19:37):
moved into his new home, a couple of daily practices
have been able to release a lot of that pain
from my body. And one daily practice is going for
a walk and and really kind of shaking out some
of that stress and that trauma. Another daily practice is
inviting the father, son and Holy Spirit into my daily
(19:58):
life and praying for courage and clarity and anointing and
and operating in, in the spirit. And then, um, I
try to set aside some time to, to do some stretching,
but it's it's very, very challenging when you're living in
the middle of it, because I know I did a
lot of things right. And I was still really feeling
(20:20):
the chronic effects of the stress on my body. And
so I think it's for a lot of caregivers just
being very honest about your needs and inviting people to
step into your life and help out and accepting that help.
I know a lot of times as caregivers, it's really
challenging for us to admit that we could use the help.
(20:43):
And so we'll we'll say we're fine, everything's fine, and
everything's really not fine. So accepting that help and then
and then trying to take some time to really take
care of yourself.
S4 (20:53):
Yeah. So that self care and the things you were
talking about really is important. Right. Because if we don't
take care of ourselves, we can't take care of children
or anybody else ultimately.
S2 (21:04):
Yeah, exactly.
S4 (21:06):
Chris mentioned the documentary earlier. Tell us a little bit
about about that documentary and how that came about.
S2 (21:14):
Yeah, that came about after I created the Lucas Project,
which is a nonprofit that serves special needs families with
resources and support. And we wanted to bring awareness to
families like mine. I just thought, you know, we need
to create a documentary that kind of peels back the
(21:34):
curtain and exposes what life looks like, because a lot
of times people just are not familiar with families like
ours because we don't go out into the world. It's
not very accommodating or accessible. And so we stay home isolated.
And a couple of years ago, I think it was 2018, actually,
I just posted on Facebook. I said, I have this
(21:57):
great idea, I'd like to create a documentary. Um, just
kind of peeling back the curtain of, of a special
needs life. And if there's a filmmaker or producer out
there that would want to meet with me and discuss
this idea, I'd love to set something up. And the
next day, a filmmaker from Nashville reached out and we
(22:19):
met for lunch, and four years later we created a documentary.
They they followed our family around for about four years.
The documentary is called Unseen How We're Failing Parent Caregivers
and Why It Matters. And if you head to our website,
caregiver.com and sign up for our newsletter, you will be
(22:40):
kept up to date on all of the future showings
that we're going to be offering.
S4 (22:44):
Well, I'm sure that's going to help a lot of
people who, as you said earlier, are not aware and
many have no idea of what this kind of lifestyle
looks like. So I think that's going to that's a
real asset. It's amazing how God works things out, isn't it, to.
S5 (23:01):
Get.
S4 (23:02):
You to the right person to do that?
S3 (23:05):
One of the most powerful things in it, not only
following your family around and seeing your husband Ryan, talk about,
you know, how he's not going to Make five year
plans anymore that it's day by day. One of the
most powerful things is just the people that were interviewed
who talk about how what a struggle this is, and
(23:25):
they're just real and authentic and vulnerable. And I think
that's one of the most powerful things of that documentary.
S2 (23:31):
Yeah, I would agree. And just to realize how many
families are out there dealing with the same emotions, the
same isolation, the same depression, anxiety, and I think it
just really brings an awareness that there are all these
families and they need help in some, in some way.
S5 (23:52):
Yeah.
S3 (23:53):
Well, even the comparison of of Covid, the pandemic and
what happened with the shutdown, you say in there that
in a lot of ways, this is the same thing
that happened to families who are doing that caregiving. It's
just it for them. It didn't end right.
S2 (24:12):
No. We kind of laughed, even during the pandemic. Like
the whole world was freaking out about not being able
to go out. And we were like, this is just
life is normal. Outside of Luke not being able to
go to school. That was very challenging because he loved
school and did not understand or comprehend why he couldn't
go to school, and so that resulted in a lot
(24:32):
of screaming all day long. But yeah, other than that,
it was kind of life as normal. Like this. This
is just how we do life.
S3 (24:41):
One of the really powerful comments came from a woman,
and she was teary eyed as she talked, and she
was speaking a little softer, and she says, 2:00 in
the morning. This is the only time when I that
I have to myself and I saw that. And it's like,
that speaks volumes, doesn't it, Jess?
S5 (25:03):
Yeah it.
S2 (25:03):
Does. Yeah. And I mean, I would never sacrifice sleep,
but she.
S5 (25:09):
She Apparently, I.
S2 (25:11):
Enjoy my sleep too much.
S5 (25:13):
Um, but.
S2 (25:14):
Yeah, you just learn to cope. However, you need to
cope so that you can continue to rise another day
and do it all over again.
S1 (25:26):
This is the building relationships with Doctor Gary Chapman podcast.
Gary's the author of the New York Times best seller
The Five Love Languages. You can take a quiz to
discover your love language and find out about our featured
resource at Building relationships.us. Jess Ronnie is our guest in
her book is our featured resource. It's titled caregiving with
(25:47):
grit and Grace. Just go to building relationships.us.
S4 (25:53):
Jess, you mentioned earlier, of course, you obviously were praying
through all this, but you prayed for healing, you know,
for your son Lucas and your first husband, Jason. What
did you come to understand after you realized realize that
healing was not going to occur?
S2 (26:12):
I came to understand years later that it was really
more about healing me of my preconceived ideas, of how
I thought God should orchestrate my life, um, my ideas
of control and really healing me, of my ideas of
(26:32):
of pride and ego, which are ultimately steeped in this
idea of control that we think we have over our lives,
and even an understanding that Jason is completely healed. He
received the best kind of healing when he went home
to heaven. And Lucas, too, is completely healed according to
(26:54):
the way God wanted Lucas's life to bring glory to him.
You know, I look at him, one of the most
humble individuals on this planet who has no ego or
pride or. and it's just amazing to me what God
has done with his story and how he's brought so
much hope and encouragement through his life. And, you know,
(27:17):
the the documentary and the nonprofit and the books about him.
And it's just really remarkable to me how there has
been so much beauty from ashes when when initially I thought,
you know, my situation was completely hopeless.
S4 (27:34):
I can certainly understand where you would get to the
place where you feel like there's just no hope. It's
not going to happen. They're not going to be healed.
And yet, as you say, we recognize God. God is
sovereign and God is going to work good out of
our situation. We just need to be open to him
and gear into what he's doing. Right.
S5 (27:57):
Mhm.
S2 (27:58):
Exactly.
S4 (27:59):
Now you describe caregiving as holy work. H-o-l-y holy work.
What does that mean?
S2 (28:10):
Uh, for me, like I mentioned earlier, it was really
a process of learning to reframe my perspective. And it
it came after a day Lucas was around 15 years
old and he was sick and he was not happy.
And I had a deadline for a book I was writing.
I was the executive director of this new nonprofit that
(28:31):
I had just started. Lots of big, exciting things on
the horizon, and Lucas kept screaming all day, um, because
he wasn't feeling well. He had numerous diapers that I
was changing, and I was just very irritated and annoyed
and grumbling about it. And the Holy Spirit just whispered
(28:53):
to me, just, this is holy work. This is the
holiest work that you can do in serving your son.
That just that moment changed me, so much so that
I had a sign created that says, this is holy work,
and hung it above Lucas's bed just as a constant,
tangible reminder that caring for my son was the most
(29:17):
important work. All of the other stuff was good stuff.
It was God ordained stuff. But in laying down my
life to care for my son, I was becoming more
Christ like.
S5 (29:28):
Well.
S4 (29:29):
I'm sure there are people, when they find themselves in
a caregiver situation that they don't feel equipped to do this.
I'm assuming you probably felt the same way. What guidance
would you give to someone who just says, I don't?
I'm just not equipped to do this. I just don't
know how I'm going to do this.
S2 (29:50):
I kind of jokingly call myself a reluctant caregiver because
if I were God looking for somebody to put in
a caregiver role, it would not be just Ronnie. I'm not.
S5 (30:01):
Um.
S2 (30:02):
I would make a horrible nurse. I'm not like the
mom who snuggles with sick kids on the couch. I'm
more of a like, here's your bucket. Let me know
if you need something. But the Lord and his great
mercy has used my particular skill set to not only
teach me how to care for others, but also in
(30:25):
using my skill set. I've realized that I am a doer,
I'm a fixer, I'm a problem solver. And so I've
been able to model these attributes for other caregivers and
I think bring hope and encouragement along the journey. And
(30:45):
I would just say to that person, God does know
what he's doing. You may look at it and and
be like, this does not seem right. I am not
the right person to care for this individual, but he
will equip you. And it again comes back to that surrender.
If you surrender and obey, just obey the next step,
(31:06):
the next action that you need to take. And he
will equip you each and every step of the way
if you allow him to.
S4 (31:15):
So it's reaching out to ask God for wisdom. And
are there are there people in a in a community
that you can reach out to that might begin to
help you cope with this? Or do you sometimes recommend
counseling for for somebody that's in this situation?
S2 (31:34):
I would recommend counseling. I think if the counselor had
an understanding of what families like ours go through, you know,
my husband and I pursued counseling a couple of times,
and honestly, the counselor had no background with what families
like mine go through and suggested to my husband that
(31:54):
when times get tough that he breathed in a paper sack,
and a couple of weeks later, he was actually in
the E.R. with panic attacks that resembled heart attacks. Because
our life had gotten so overwhelming. And personally, I've found
more comfort, really, in talking to other families that do
get it and feeling seen. And I'm sure counselors can
(32:19):
offer some coping skills or tools. But again, it's if
you're not familiar, it's it's truly for some of these families,
it's like being in a war zone day after day.
S5 (32:32):
Yeah.
S2 (32:32):
And they compare, you know, the PTSD that families like
mine go through to that of vets because of the
aggression and the behavioral challenges that we we walk through. So, um,
there are support groups. I know the Lucas project offers
a free support group. It's a virtual support group called
(32:53):
Caregivers Cove. We currently have over 2000 participants, but I
would find something like that just so that you don't
feel so alone and you have somebody or a group
of people that you can talk to honestly and vulnerably
about your life.
S4 (33:10):
Yeah, give us that website where they might go and
learn about this on the online care group.
S2 (33:18):
Uh, it's the Lucas Project.org and it's under our resource tab.
It's called Caregivers Cove.
S4 (33:27):
Okay. Because I think there are many out there. If
they are in this situation, they want all the help
they can get. And that sounds like another another source
of help. May I ask this, how has all the suffering,
the loss, the struggle that you have gone through? How
has that affected your other children?
S2 (33:51):
Um, I get asked this question quite often, and we've
been very honest with our kids and having eight children,
there hasn't been as much time to have that individual
one on one time with each child. And when we
recognize that a child really needs that, we would carve
out that time. And we've formulated more of a tribal
(34:16):
model where it was really important to all gather around
the dinner table every night and share a meal together.
And when one of the family members was struggling, it
was important to rally around that individual and help them out.
So really living in a community model within our family,
and we've had a lot of honest conversations about the
(34:39):
fact that seven of them have a very tragic story.
Seven of my kids lost a parent, and all eight
of them have grown up with a profoundly disabled brother.
And it's up to them, really, what what they're going
to do with their story. They can wallow in the
injustice of it, or they can trust that God has
a plan for their life and for their story, and
(35:01):
they can move forward in faith and do something positive
with their story. And it's been really remarkable to see.
Now we have four kids who live outside of our home,
all very well adjusted, kind individuals who really see other
people who don't have this narcissistic tendency that you see
(35:22):
so often in so many individuals nowadays, because they did
have to rally around their brother. They they helped with
their brother, and they were one of eight kids. And I,
as a mother, am just so proud to see how
they do see other people. And they step in and
they offer assistance where that's needed. So again, it's their story.
(35:45):
It's it's my story. It's their story. We've all had
a hard story and it's up to us to decide,
are we going to trust God with that story and
move forward in faith and do something positive?
S4 (35:58):
Now, when you married Ryan, you said he had three children.
And so they're coming. They moved in with you and
your four children. How did that stepparent stepchild thing was that?
Was that something that there was early on acceptance of
(36:19):
those children, or how did you how did you visualize
all of that?
S2 (36:23):
There really was because they were all so young. They
were very excited to have all of these built in playmates.
And you alluded to earlier, you know, it probably would
have been very different if they were older, and we
recognize that. But they were very excited to have a
mom and a dad figure again. Um, they were very
excited for all of these built in playmates. Um, and they,
(36:47):
we didn't really have these step labels because we adopted
them so early on. And in fact, my daughter Maya,
one of her teachers, referred to her as my step
or referred to me as her step mom. And she said,
that's not my step mom, that's my mom.
S5 (37:05):
And so yeah, yeah, yeah.
S2 (37:08):
But again, we recognize they were young and so they,
they just really all grew up together and they're all
extremely close to this day. But I mean, we we
had challenges I would say more so in our marriage
and the blending of what that looked like than with
the kids. I'm also the oldest of 12, so I've
(37:32):
been sort of preparing for all these children my whole life.
I've been in kind of a caregiver role since I
was two years old, when my mom had twins. And
I see these pictures now of two year old Jessica
sitting on the couch with her twin brothers under her arms.
You know, feeding them bottles. So it was just really
(37:54):
second nature. It wasn't all that shocking to me to
have so many children. I think it was more shocking
to Ryan, um, to have so many children.
S4 (38:02):
How old were his children when they came in?
S2 (38:06):
Uh, six. Four and one.
S4 (38:11):
Yeah. Okay. Yeah. I can see how it would be
easier at that age than if they had been ten, 12, 15, 13,
you know, whatever. Yeah.
S2 (38:20):
Yeah, absolutely.
S4 (38:23):
Well, let's talk about the marriage. Maybe, maybe, first of all,
words about your marriage, your time with Jason. How does
all this pressure and all caring for Lucas and everything?
How did that affect your marriage? And then let's talk
about your your marriage with Ryan and how how this
has affected the marriage and what are the challenges.
S2 (38:46):
I have with Jason? Like I mentioned earlier, we just
our whole marriage was basically living in survival mode. And
that makes me sad sometimes because it just felt like
we were always fighting the next battle. We both had
a very deep faith and we we really enjoyed each
other's company and were best friends, but it was so
(39:08):
hard to carve out those fun times together because of
all of the challenges, all of the brain surgeries, um,
that felt like were occurring almost every couple of months, honestly.
But I remember some of the happiest times of my
life were when we were first married and we lived
(39:29):
in a double wide and we were just making enough
money to survive. And I had Caleb, and we were
just blissfully unaware of what was coming around the bend
for our lives together. But I'm proud of that marriage.
I'm proud of how we stood firm in our faith.
I'm proud of how he brought glory to God through
(39:52):
his struggles, even up until the very end. And then,
you know, marrying Ryan. We did get married very quickly,
and we recognized that in that decision. We did not
necessarily process and grieve the loss of our former spouses
(40:13):
prior to coming together. And in fact, we kind of
grieved and processed together, which was not necessarily the best idea.
And in looking back, we should have found somebody that
we could work through some of those feelings with rather
than dump it all on each other, because that's a
very challenging place to be like grieving the loss of
(40:37):
one spouse and falling in love with a new spouse. It's.
I can't even hardly explain it, but it's, um, just
a murky, messy place at times. But we did realize
early on, too, that if our marriage was going to work,
we had to be really intentional about spending time together
(40:57):
and really getting to know each other and cultivating that intimacy.
And so from the very beginning, we went on a
weekly date. We have been praying together every morning for
14 years. Um, and we would carve out time to
get away, just the two of us every year. And
those were intentional choices. We have never driven fancy vehicles
(41:18):
or gone out to eat all the time, but we
do set aside money to go on those date nights
and to spend that week away every year to reconnect,
because we wanted to give our eight children the gift
of a healthy marriage. And so that was a choice
very early on that we committed to.
S4 (41:38):
Yeah, I was talking to a gentleman recently whose wife
died and he remarried, and he was saying in our conversation,
he said, you know, we each feel freedom to talk
about our former spouse, you know, to to bring up things.
If something happens. It reminds me of my wife, you know,
(41:59):
she's happy for me to share that. And she does
the same thing. Have you all found that to be
a part of your your communication or or is that
not been a part of it?
S2 (42:11):
Um, it's changed initially. I think there was some insecurities
that came up when we would bring up the former spouses.
And part of that was, you know, when somebody dies,
there's a sainthood aspect. And so every memory would be
this beautiful memory while the two of us are Battling
(42:36):
through this new marriage and trying to find our way.
And and so there was some insecurity in the initial stages,
and we've had to figure out how to walk through
that gracefully with one another. 14 years later, now that
we have our own shared history. We've been raising these children.
We feel very firmly established in our love for one another.
(42:59):
It's very different, and those conversations arise quite often where
something will remind us of that former spouse. So I
think just recognizing that sometimes it takes time to build
that history together and to build that trust and that
love to, because in those initial stages, you're kind of
(43:19):
running on passion and endorphins and not so much the
trust and the, the, the foundation, you know, of what
truly solidifies you to each other.
S4 (43:31):
Takes time, takes time to build that sense of confidence
with each other. And I think, I think it would
be more difficult in a second marriage than it would
be in a first marriage. I mean, we all have
to do that in a first marriage as well, you know,
because there's a whole lot we don't know about each
other when we get married, and we have to work
through all of that. But I think in a second
(43:53):
marriage it would probably be even more difficult. So I'd
just say a word to the caregiver who's listening, who
just feels hopeless, you know? It's just too overwhelming to them.
What would you say to them?
S2 (44:05):
I think hopelessness comes from a feeling that you're alone.
And I would just say to that caregiver, you're not alone.
God is right in the midst of your suffering. He's
right in the midst of the mundane and the monotonous
and the screaming and the diaper changes and the feeding
and all of it. God is is right there, just
(44:26):
as he was with Jesus, his son, in the Garden
of Gethsemane when He begged his father in heaven, please
take this cup from me. But then surrendered and said,
but not my will, but yours be done. I would
just encourage this individual to surrender and to recognize God
is right there, and to invite him into your your
(44:48):
struggles and allow him to strengthen you and sustain you.
S4 (44:52):
Well, Jess, I really appreciate you being with us today,
and I think this book is going to help any
caregiver out there, and we just want to help get
the word out, because I think it's so important. And
I think also encourage them to go to the website,
your website, and Chris can share that with us again
before we go off the air later. But thank you
(45:13):
for being with us, and thank you for allowing God
to use all the hard stuff in your life to
bless the lives of others. So thanks for being with us.
S2 (45:24):
Yeah, thanks for having me.
S3 (45:26):
What an encouraging hour with Jess, Ronnie, Ronnie. E. And
if you want to find out more about the book,
go to. Building relationships. Does caregiving with grit and Grace
is that title? We also mentioned the documentary unseen. You
can find out more about that at caregiver, doc.com or
(45:47):
the Lucas Project.org has some great information for you there too.
The Lucas Project.org.
S4 (45:55):
And next week how to discover the power to create
a marriage. You and your spouse love here.
S1 (46:02):
Doctor Bob Paul's encouragement in one week. Our thanks to
our production team, Steve Wick and Janice. Backing building relationships
with Doctor Gary Chapman is a production of Moody Radio
in association with Moody Publishers, a ministry of Moody Bible Institute.
Thanks for listening.
If you're a caregiver for a child, a relative, or
a friend, don't miss the help and hope on today's
building relationships with Doctor Gary Chapman.
S2 (00:09):
It's just amazing to me what God has done with
his story and how there has been so much beauty
from ashes. When when initially I thought, you know, my
situation was completely hopeless.
S1 (00:27):
Welcome to building relationships with Doctor Gary Chapman, author of
the New York Times bestseller, The Five Love Languages. The
demands of caregiving can often leave you feeling exhausted, isolated, stressed,
or unappreciated. Today, Jessica Rainey shares her caregiving story and
how her perspective has been transformed by grace.
S3 (00:48):
Our featured resource at Building Relationships US is Jessica's book
caregiving with grit and Grace. A mom discovers meaning, strength,
and gratitude as a caregiver. You can find out more
at building relationships.us. Gary is a pastor. You have seen
the silent struggles of caregivers and the difficulties they face,
(01:10):
haven't you?
S4 (01:11):
Absolutely, Chris. You know, I deeply, deeply admire those people
who are caregivers because it's 24 hours for many of them.
You know, if they're in the home and family members,
it's a 24 hour situation. So, yeah, no, there's a
lot of lot of struggle there. But hopefully and thankfully
when God gives grace, people never, ever regret caring for
(01:34):
family members, you know? And of course there are people.
That's their lifestyle. I mean, that's what they do. They
work in that, you know, as caregivers. So I'm excited
about our conversation today.
S3 (01:44):
Let me introduce our guest, Jess. Ronnie is an author, caregiver, advocate,
podcast host of coffee with caregivers and associate producer of
the documentary Unseen How We're Failing Parent caregivers and why
it matters. She holds a master's degree in education. She's
the founder of Hope farm, which is a residential home
(02:05):
for disabled adults and the executive director of the Lucas Project,
a nonprofit dedicated to serving parent caregivers. Jess and her husband, Ryan,
live in Holland, Michigan with their eight children and are featured. Resource.
If you go to Building Relationships us, you'll see it
right there. Caregiving with grit and Grace a mom discovers meaning, strength,
(02:27):
and gratitude as a caregiver. Again, go to building relationships.us.
S4 (02:33):
Well, Jess, welcome to Building Relationships.
S2 (02:36):
Yeah, I'm excited to be here. Thanks for having me.
S4 (02:39):
It seems to me that the ministry you have is
directly related to a lot of the pain and struggle
you've experienced in your own life. Is that true?
S2 (02:49):
Yeah, absolutely. Um, you know, Lucas, my son, who is
profoundly disabled, has always been the thread to everything I've
really created for the past, um, 12, 15 years. From
the nonprofit to the books to the podcasts to the documentary.
It's all been to not only bring awareness and resources
(03:10):
for other people, but it's been to create awareness and
resources for our family as well.
S4 (03:16):
How old is Lucas now?
S2 (03:18):
He's 20.
S4 (03:19):
20? Yeah. Well, before we get into your story, tell
us what inspired you to write caregiving with grit and Grace.
S2 (03:29):
Yeah, that's that's kind of a funny story. My husband
actually said to me for years, you should write a
devotional book for caregivers. And I said, I don't know
that I'm the right person to do that. It just
I didn't feel equipped, I guess, um, to minister to
caregivers in such a profound capacity. And he finally convinced me,
(03:54):
along with my agent, to write a proposal. And I did.
And a publisher loved it and offered me a contract.
And that's how caregiving with grit and Grace came about.
And it's so funny. I actually wrote that book as
we were creating a group home for Lucas, and it
(04:15):
almost became like God was downloading a love letter to
a grieving mother as I prepared to release my son
to the care of others. And it in turn has
become a love letter to caregivers around the world.
S4 (04:29):
Yeah, sometimes God does things we don't anticipate, right? Yes.
S2 (04:35):
Sometimes that's a story of my life.
S4 (04:38):
Yeah. And what do you hope caregivers who are listening
today take away from our conversation?
S2 (04:46):
I really hope that they're encouraged to reframe their Perspectives
in regards to caregiving. I know it's often seen as
monotonous and mundane and, um, you know, grunt work that
we have to do. And I would just really encourage
caregivers to reframe their perspective and see it as holy work, really,
(05:08):
the holiest work we can do this side of eternity
is caring for someone who cannot care for themselves. And
in fact, through our caregiving, we are becoming more like
Christ who came to earth with the sole purpose of
caring for us, our physical needs, our mental needs, our
spiritual needs, and so to reframe our perspectives and see
(05:28):
it in light of becoming more Christ like has just
been really a game changer for me and my personal
caregiving journey as well.
S4 (05:36):
Yeah, I greatly admire caregivers. I mean, I just I
stand in awe sometimes as I see, you know, what
you and others you know, deal with on a regular basis.
So you dedicate the book to your son Lucas, who
you thank for teaching you what it truly looks like
to lay down your life for another. What happened with Lucas?
S2 (05:59):
Uh, Lucas was diagnosed with a stroke in utero at
my 20 week ultrasound appointment. We were told that there
was very little hope. And it was suggested that we
terminate and try again. And the doctor's words. You're young
and healthy. You won't have any problems getting pregnant. Uh,
it's just nature's way. These fetuses aren't supposed to make it.
And my husband, Jason, and I instead put Lucas in
(06:22):
the Lord's hands and trusted that his will would be done.
And Lucas came out screaming with life four months later. Uh,
he underwent brain surgery, spent two weeks in the NICU,
and then we were handed our baby with kind of
an umbrella diagnosis of special needs and told good luck.
And Jason and I just looked at each other in awe.
We had gone from, there's no hope your baby's going
(06:43):
to die to here you go. Good luck. And so
we just went home elated that we were going home
with our miracle baby. I did not grieve one single
bit that Lucas might have any additional needs or disabilities.
I was just thrilled to be going home with a
live baby.
S4 (07:02):
Yeah. Wow. Wow. Well, I know a lot of caregivers
who recognize the pain, the struggle which you came to
recognize as time went on. How do you come to
grips with the term of the prospect of being a
lifelong caregiver, which is what it's really turning out to
you for you?
S2 (07:22):
Mhm. That was a process. Um, and I don't really
think I came to grips with it until Lucas started
to go through puberty and became aggressive. And we had
behavioral challenges, and he would lash out at me and
at his siblings, and he was incontinent and non-verbal. And,
you know, when he was an adorable little boy, it
(07:44):
was easy to find people to help, even to step in,
you know, with a five or a six year old
who's in diapers. But when that child is 16, 17, 18,
still in diapers and now capable of hurting people, nobody
wants to help anymore. And that's when it became very
apparent to me that this was a lifelong gig that
(08:05):
the Lord had called me to. And I think that's
when I really even began to grieve the fact that
Lucas had special needs and and even grieve the fact
that he wasn't a typical child and began to process like,
what will our future look like with this child?
S4 (08:26):
Well, what advice would you give other parents who are
facing a similar situation to what you faced?
S2 (08:36):
I think it boils down to really one word surrender.
And that is like a daily surrender To the father's
care and trusting his heart not only for yourself as
a parent, but trusting his heart for your child and
for your family, and truly trusting that he is able
(08:57):
to do exceedingly more than we could ever comprehend or
imagine with our stories. When we are obedient and step
into the the plan and the life that he has
for us.
S4 (09:10):
I think a lot of listeners who have never experienced
anything like this, really, it's hard to even comprehend what
that would be like.
S2 (09:19):
Mhm.
S4 (09:20):
Well, Jess, what are the daily challenges of caring for
your son Lucas now at this juncture?
S2 (09:28):
Well, like I mentioned earlier, we actually created a group
home for him and he moved into that home a
year ago, February 1st. So for the past year I've
been really processing and grieving and accepting over and over
again the fact that I'm not his full time primary
caregiver anymore. And so it looks very different than it
(09:52):
did even a year ago. But even, you know, for up,
up for 19 years, up to 19 years, he required
full time care bathing, diapering, um, feeding, getting him ready.
Every morning. I slept with a baby monitor beside my
head for 19 years because he didn't sleep very well
and would wake up in the middle of the night
(10:14):
screaming or, um, creating self injuries by banging his head
against his arm. Um, so just 24 over seven care.
So living like 19 years really in a form of
survival mode as a caregiver?
S4 (10:31):
Yeah. I want to ask you a really personal question.
Have you ever felt angry or frustration toward God in
this situation.
S2 (10:43):
Oh, absolutely. Yeah. And especially I feel like I surrendered
much faster during my pregnancy with Lucas. But later on,
as I walked through my husband's three year journey with cancer,
I was extremely angry and could not understand or comprehend
why the Lord would require such a difficult path for me.
(11:09):
With numerous brain surgeries with Lucas and his father and
four young children that I had to care for, I
don't know that I manage those emotions very well. During
Jason's cancer journey, I acknowledged them. God and I wrestled greatly,
I lamented, I screamed, I wailed, and really, only up
(11:31):
until two weeks before Jason passed away did I finally
drop to my knees and surrender and say, okay, I,
I wanted you to take this cup from me. Just
like Jesus pleaded in the Garden of Gethsemane. I don't
want to carry this heavy burden, but you have called
me to carry this, and not my will, but yours
(11:54):
be done. You are God, and I am not. And
from that moment forward, something shifted, and Jason actually passed
away two weeks later. But in that shift, I did
find peace moving forward.
S4 (12:07):
Well, I think sometimes Christians say, well, you should never
get angry with God or frustrated with God. The reality is,
we all do at times when we don't understand what's
going on. But the reality is we're not going to
understand everything that happens in our lives. And somewhere along
the line, we have to come to where you finally came,
(12:29):
you know, and that is accepting the reality and putting
the whole thing in God's hands, even though we don't understand.
So you became a widow with four children. How did
you deal with that? And did you have a support
system that was helping you or. Wow. I mean, I'm just.
I'm just feeling a lot of pain myself as I'm
(12:53):
listening to you.
S2 (12:54):
It was, um, you know, the funny, not the funny thing.
The interesting thing, really? Um, when Jason passed away, there
was finally almost some peace, uh, because I had put
forth so much energy caring for him for three years. Brain.
Brain cancer is a cruel, cruel taskmaster. By the time
(13:17):
he passed away, I missed him deeply. But I did
not miss Jason, who had brain cancer. Our relationship had
definitely shifted from a spousal relationship to a caregiver and
one who needed care, and I devoted myself to him
(13:38):
in his final months, years, and so much so that
I really missed my kids. And so when he he
passed away, I just really dove into being a mom
again and reconnecting with my four young children. I had
four children under seven years old, including Lucas, um, who
(13:59):
was profoundly disabled. And so to not have cancer to
deal with anymore, there was sort of this peace to
be able to focus on my kids again. And I
had a really strong support system for the the three
years that Jason went through brain cancer. And it's always
interesting as I look back and reflect, I didn't cook
(14:22):
a meal or or do my laundry or clean my
house or anything really. For three years I had so
much help as Jason was battling cancer, But then I
compare that to raising Lucas for 20 years, and there's
been very little help. And I think people are just
much more eager to step into those short term opportunities
(14:45):
and help out. And there's something very daunting about those
longer years upon years upon years of raising a child
that they don't maybe know what to do with, or
there's some fear associated with stepping in and helping those families.
S4 (14:59):
Yeah, I can I can see that. How long were
you and Jason married before he passed away?
S2 (15:06):
Uh, 11 years.
S4 (15:08):
11 years? Mhm. Wow. How old was he?
S2 (15:12):
He was 33.
S4 (15:13):
33.
S2 (15:15):
Most of our marriage was just fighting one hurdle battle
after another. Um, it you know, it's interesting to reflect
back on that. Even we we had very little periods
of peace just between Lucas and Jason's constant battles with
brain cancer. Yeah.
S4 (15:36):
Are your other four children all healthy physically?
S2 (15:39):
I have eight children now. Yes. All seven of them
are healthy. Um, yes. And the other three are very healthy.
S4 (15:47):
Okay, well, now you got to tell us how you
got eight children. In due time, it sounds like God
led you to another man.
S2 (15:57):
He did? Um, yes. Very interesting part of the story. Um,
at Jason's funeral, his mom actually pulled me aside and said. Jess,
I just want you to know I'm praying for your
next husband. And that kind of shocked me because I
wasn't in any frame of mind to be thinking about
(16:20):
getting married again. At that point, I was hopeful that
I would get married again. I really enjoyed marriage. I
had a good marriage and I wanted that again in
my life. And little did I know, three months later,
a stranger left a comment on my blog I had
blogged during Jason's cancer journey just to keep the masses updated,
(16:43):
and she was from Pennsylvania and she said, I don't
know why I'm asking you to do this, but I
just would like you to reach out to this widower
in Oklahoma. He lost his wife to brain cancer four
days after Jason died, and he has three young children
and he's not doing very well. And so I found
(17:03):
his blog and left a comment. And I woke up
the next day to an email from this man. And
those emails turned into phone calls, and we eventually met
and we were married in April of 2011. He moved
to Michigan and we adopted each other's children, and we
went on to have an eighth and final child together
(17:24):
in 15.
S4 (17:27):
Wow. Oh, no. Now tell me. I know our listeners
are asking. I'm asking. How long was it from the
time Jason died until you actually got married?
S2 (17:42):
Well, Jason passed away in August, and we were married
in April, so.
S4 (17:46):
Okay.
S2 (17:47):
Whatever that. Whatever.
S4 (17:48):
Whatever that is. All right.
S2 (17:50):
In my defense, and I often say this, I do
move quickly. Jason and I were married 11 months after
meeting as well, so I'm just a very decisive woman, so.
S4 (18:01):
Okay. I hear you, I hear you. Right. Well, you know,
I think sometimes we experience this where now your children
are still young, but where children that are older and
their father dies and their mother marries, you know, within
six months or seven months or whatever and say, wait
a minute, mama, wait a minute, wait a minute. What
are you doing? I've seen that in my counseling, you know,
(18:24):
through the years. Yes, but but there is no pattern,
you know, as to or in time pattern in terms
of when God brings someone into your life and brings
you together. Well, I'm impressed that he moved to Michigan
from Oklahoma. Oklahoma. Is that what you said?
S2 (18:39):
Well, he only lasted two years in Michigan. And then
he said, I can't deal with the snow. So we
moved to Tennessee. So.
S4 (18:46):
Okay.
S5 (18:47):
All right. He didn't he didn't last real long. But
here we are back in Michigan now.
S4 (18:51):
Oh, you're back in Michigan.
S5 (18:53):
Okay. Right.
S4 (18:53):
Well, okay. So being a parent caregiver can give you anxiety,
can bring depression, can bring chronic stress. And you say
in the documentary that your heart races. What do you
do with all these feelings that affect you even physically?
S2 (19:13):
Hum. Yeah. That was that was a battle like I mentioned.
You kind of live in this constant state of survival
mode and I recognized it, I acknowledged it, I prayed
about it. I was honest about my needs, but my
body still was in a chronic state of pain that
nobody could really figure out. And only honestly. Since Lucas
(19:37):
moved into his new home, a couple of daily practices
have been able to release a lot of that pain
from my body. And one daily practice is going for
a walk and and really kind of shaking out some
of that stress and that trauma. Another daily practice is
inviting the father, son and Holy Spirit into my daily
(19:58):
life and praying for courage and clarity and anointing and
and operating in, in the spirit. And then, um, I
try to set aside some time to, to do some stretching,
but it's it's very, very challenging when you're living in
the middle of it, because I know I did a
lot of things right. And I was still really feeling
(20:20):
the chronic effects of the stress on my body. And
so I think it's for a lot of caregivers just
being very honest about your needs and inviting people to
step into your life and help out and accepting that help.
I know a lot of times as caregivers, it's really
challenging for us to admit that we could use the help.
(20:43):
And so we'll we'll say we're fine, everything's fine, and
everything's really not fine. So accepting that help and then
and then trying to take some time to really take
care of yourself.
S4 (20:53):
Yeah. So that self care and the things you were
talking about really is important. Right. Because if we don't
take care of ourselves, we can't take care of children
or anybody else ultimately.
S2 (21:04):
Yeah, exactly.
S4 (21:06):
Chris mentioned the documentary earlier. Tell us a little bit
about about that documentary and how that came about.
S2 (21:14):
Yeah, that came about after I created the Lucas Project,
which is a nonprofit that serves special needs families with
resources and support. And we wanted to bring awareness to
families like mine. I just thought, you know, we need
to create a documentary that kind of peels back the
(21:34):
curtain and exposes what life looks like, because a lot
of times people just are not familiar with families like
ours because we don't go out into the world. It's
not very accommodating or accessible. And so we stay home isolated.
And a couple of years ago, I think it was 2018, actually,
I just posted on Facebook. I said, I have this
(21:57):
great idea, I'd like to create a documentary. Um, just
kind of peeling back the curtain of, of a special
needs life. And if there's a filmmaker or producer out
there that would want to meet with me and discuss
this idea, I'd love to set something up. And the
next day, a filmmaker from Nashville reached out and we
(22:19):
met for lunch, and four years later we created a documentary.
They they followed our family around for about four years.
The documentary is called Unseen How We're Failing Parent Caregivers
and Why It Matters. And if you head to our website,
caregiver.com and sign up for our newsletter, you will be
(22:40):
kept up to date on all of the future showings
that we're going to be offering.
S4 (22:44):
Well, I'm sure that's going to help a lot of
people who, as you said earlier, are not aware and
many have no idea of what this kind of lifestyle
looks like. So I think that's going to that's a
real asset. It's amazing how God works things out, isn't it, to.
S5 (23:01):
Get.
S4 (23:02):
You to the right person to do that?
S3 (23:05):
One of the most powerful things in it, not only
following your family around and seeing your husband Ryan, talk about,
you know, how he's not going to Make five year
plans anymore that it's day by day. One of the
most powerful things is just the people that were interviewed
who talk about how what a struggle this is, and
(23:25):
they're just real and authentic and vulnerable. And I think
that's one of the most powerful things of that documentary.
S2 (23:31):
Yeah, I would agree. And just to realize how many
families are out there dealing with the same emotions, the
same isolation, the same depression, anxiety, and I think it
just really brings an awareness that there are all these
families and they need help in some, in some way.
S5 (23:52):
Yeah.
S3 (23:53):
Well, even the comparison of of Covid, the pandemic and
what happened with the shutdown, you say in there that
in a lot of ways, this is the same thing
that happened to families who are doing that caregiving. It's
just it for them. It didn't end right.
S2 (24:12):
No. We kind of laughed, even during the pandemic. Like
the whole world was freaking out about not being able
to go out. And we were like, this is just
life is normal. Outside of Luke not being able to
go to school. That was very challenging because he loved
school and did not understand or comprehend why he couldn't
go to school, and so that resulted in a lot
(24:32):
of screaming all day long. But yeah, other than that,
it was kind of life as normal. Like this. This
is just how we do life.
S3 (24:41):
One of the really powerful comments came from a woman,
and she was teary eyed as she talked, and she
was speaking a little softer, and she says, 2:00 in
the morning. This is the only time when I that
I have to myself and I saw that. And it's like,
that speaks volumes, doesn't it, Jess?
S5 (25:03):
Yeah it.
S2 (25:03):
Does. Yeah. And I mean, I would never sacrifice sleep,
but she.
S5 (25:09):
She Apparently, I.
S2 (25:11):
Enjoy my sleep too much.
S5 (25:13):
Um, but.
S2 (25:14):
Yeah, you just learn to cope. However, you need to
cope so that you can continue to rise another day
and do it all over again.
S1 (25:26):
This is the building relationships with Doctor Gary Chapman podcast.
Gary's the author of the New York Times best seller
The Five Love Languages. You can take a quiz to
discover your love language and find out about our featured
resource at Building relationships.us. Jess Ronnie is our guest in
her book is our featured resource. It's titled caregiving with
(25:47):
grit and Grace. Just go to building relationships.us.
S4 (25:53):
Jess, you mentioned earlier, of course, you obviously were praying
through all this, but you prayed for healing, you know,
for your son Lucas and your first husband, Jason. What
did you come to understand after you realized realize that
healing was not going to occur?
S2 (26:12):
I came to understand years later that it was really
more about healing me of my preconceived ideas, of how
I thought God should orchestrate my life, um, my ideas
of control and really healing me, of my ideas of
(26:32):
of pride and ego, which are ultimately steeped in this
idea of control that we think we have over our lives,
and even an understanding that Jason is completely healed. He
received the best kind of healing when he went home
to heaven. And Lucas, too, is completely healed according to
(26:54):
the way God wanted Lucas's life to bring glory to him.
You know, I look at him, one of the most
humble individuals on this planet who has no ego or
pride or. and it's just amazing to me what God
has done with his story and how he's brought so
much hope and encouragement through his life. And, you know,
(27:17):
the the documentary and the nonprofit and the books about him.
And it's just really remarkable to me how there has
been so much beauty from ashes when when initially I thought,
you know, my situation was completely hopeless.
S4 (27:34):
I can certainly understand where you would get to the
place where you feel like there's just no hope. It's
not going to happen. They're not going to be healed.
And yet, as you say, we recognize God. God is
sovereign and God is going to work good out of
our situation. We just need to be open to him
and gear into what he's doing. Right.
S5 (27:57):
Mhm.
S2 (27:58):
Exactly.
S4 (27:59):
Now you describe caregiving as holy work. H-o-l-y holy work.
What does that mean?
S2 (28:10):
Uh, for me, like I mentioned earlier, it was really
a process of learning to reframe my perspective. And it
it came after a day Lucas was around 15 years
old and he was sick and he was not happy.
And I had a deadline for a book I was writing.
I was the executive director of this new nonprofit that
(28:31):
I had just started. Lots of big, exciting things on
the horizon, and Lucas kept screaming all day, um, because
he wasn't feeling well. He had numerous diapers that I
was changing, and I was just very irritated and annoyed
and grumbling about it. And the Holy Spirit just whispered
(28:53):
to me, just, this is holy work. This is the
holiest work that you can do in serving your son.
That just that moment changed me, so much so that
I had a sign created that says, this is holy work,
and hung it above Lucas's bed just as a constant,
tangible reminder that caring for my son was the most
(29:17):
important work. All of the other stuff was good stuff.
It was God ordained stuff. But in laying down my
life to care for my son, I was becoming more
Christ like.
S5 (29:28):
Well.
S4 (29:29):
I'm sure there are people, when they find themselves in
a caregiver situation that they don't feel equipped to do this.
I'm assuming you probably felt the same way. What guidance
would you give to someone who just says, I don't?
I'm just not equipped to do this. I just don't
know how I'm going to do this.
S2 (29:50):
I kind of jokingly call myself a reluctant caregiver because
if I were God looking for somebody to put in
a caregiver role, it would not be just Ronnie. I'm not.
S5 (30:01):
Um.
S2 (30:02):
I would make a horrible nurse. I'm not like the
mom who snuggles with sick kids on the couch. I'm
more of a like, here's your bucket. Let me know
if you need something. But the Lord and his great
mercy has used my particular skill set to not only
teach me how to care for others, but also in
(30:25):
using my skill set. I've realized that I am a doer,
I'm a fixer, I'm a problem solver. And so I've
been able to model these attributes for other caregivers and
I think bring hope and encouragement along the journey. And
(30:45):
I would just say to that person, God does know
what he's doing. You may look at it and and
be like, this does not seem right. I am not
the right person to care for this individual, but he
will equip you. And it again comes back to that surrender.
If you surrender and obey, just obey the next step,
(31:06):
the next action that you need to take. And he
will equip you each and every step of the way
if you allow him to.
S4 (31:15):
So it's reaching out to ask God for wisdom. And
are there are there people in a in a community
that you can reach out to that might begin to
help you cope with this? Or do you sometimes recommend
counseling for for somebody that's in this situation?
S2 (31:34):
I would recommend counseling. I think if the counselor had
an understanding of what families like ours go through, you know,
my husband and I pursued counseling a couple of times,
and honestly, the counselor had no background with what families
like mine go through and suggested to my husband that
(31:54):
when times get tough that he breathed in a paper sack,
and a couple of weeks later, he was actually in
the E.R. with panic attacks that resembled heart attacks. Because
our life had gotten so overwhelming. And personally, I've found
more comfort, really, in talking to other families that do
get it and feeling seen. And I'm sure counselors can
(32:19):
offer some coping skills or tools. But again, it's if
you're not familiar, it's it's truly for some of these families,
it's like being in a war zone day after day.
S5 (32:32):
Yeah.
S2 (32:32):
And they compare, you know, the PTSD that families like
mine go through to that of vets because of the
aggression and the behavioral challenges that we we walk through. So, um,
there are support groups. I know the Lucas project offers
a free support group. It's a virtual support group called
(32:53):
Caregivers Cove. We currently have over 2000 participants, but I
would find something like that just so that you don't
feel so alone and you have somebody or a group
of people that you can talk to honestly and vulnerably
about your life.
S4 (33:10):
Yeah, give us that website where they might go and
learn about this on the online care group.
S2 (33:18):
Uh, it's the Lucas Project.org and it's under our resource tab.
It's called Caregivers Cove.
S4 (33:27):
Okay. Because I think there are many out there. If
they are in this situation, they want all the help
they can get. And that sounds like another another source
of help. May I ask this, how has all the suffering,
the loss, the struggle that you have gone through? How
has that affected your other children?
S2 (33:51):
Um, I get asked this question quite often, and we've
been very honest with our kids and having eight children,
there hasn't been as much time to have that individual
one on one time with each child. And when we
recognize that a child really needs that, we would carve
out that time. And we've formulated more of a tribal
(34:16):
model where it was really important to all gather around
the dinner table every night and share a meal together.
And when one of the family members was struggling, it
was important to rally around that individual and help them out.
So really living in a community model within our family,
and we've had a lot of honest conversations about the
(34:39):
fact that seven of them have a very tragic story.
Seven of my kids lost a parent, and all eight
of them have grown up with a profoundly disabled brother.
And it's up to them, really, what what they're going
to do with their story. They can wallow in the
injustice of it, or they can trust that God has
a plan for their life and for their story, and
(35:01):
they can move forward in faith and do something positive
with their story. And it's been really remarkable to see.
Now we have four kids who live outside of our home,
all very well adjusted, kind individuals who really see other
people who don't have this narcissistic tendency that you see
(35:22):
so often in so many individuals nowadays, because they did
have to rally around their brother. They they helped with
their brother, and they were one of eight kids. And I,
as a mother, am just so proud to see how
they do see other people. And they step in and
they offer assistance where that's needed. So again, it's their story.
(35:45):
It's it's my story. It's their story. We've all had
a hard story and it's up to us to decide,
are we going to trust God with that story and
move forward in faith and do something positive?
S4 (35:58):
Now, when you married Ryan, you said he had three children.
And so they're coming. They moved in with you and
your four children. How did that stepparent stepchild thing was that?
Was that something that there was early on acceptance of
(36:19):
those children, or how did you how did you visualize
all of that?
S2 (36:23):
There really was because they were all so young. They
were very excited to have all of these built in playmates.
And you alluded to earlier, you know, it probably would
have been very different if they were older, and we
recognize that. But they were very excited to have a
mom and a dad figure again. Um, they were very
excited for all of these built in playmates. Um, and they,
(36:47):
we didn't really have these step labels because we adopted
them so early on. And in fact, my daughter Maya,
one of her teachers, referred to her as my step
or referred to me as her step mom. And she said,
that's not my step mom, that's my mom.
S5 (37:05):
And so yeah, yeah, yeah.
S2 (37:08):
But again, we recognize they were young and so they,
they just really all grew up together and they're all
extremely close to this day. But I mean, we we
had challenges I would say more so in our marriage
and the blending of what that looked like than with
the kids. I'm also the oldest of 12, so I've
(37:32):
been sort of preparing for all these children my whole life.
I've been in kind of a caregiver role since I
was two years old, when my mom had twins. And
I see these pictures now of two year old Jessica
sitting on the couch with her twin brothers under her arms.
You know, feeding them bottles. So it was just really
(37:54):
second nature. It wasn't all that shocking to me to
have so many children. I think it was more shocking
to Ryan, um, to have so many children.
S4 (38:02):
How old were his children when they came in?
S2 (38:06):
Uh, six. Four and one.
S4 (38:11):
Yeah. Okay. Yeah. I can see how it would be
easier at that age than if they had been ten, 12, 15, 13,
you know, whatever. Yeah.
S2 (38:20):
Yeah, absolutely.
S4 (38:23):
Well, let's talk about the marriage. Maybe, maybe, first of all,
words about your marriage, your time with Jason. How does
all this pressure and all caring for Lucas and everything?
How did that affect your marriage? And then let's talk
about your your marriage with Ryan and how how this
has affected the marriage and what are the challenges.
S2 (38:46):
I have with Jason? Like I mentioned earlier, we just
our whole marriage was basically living in survival mode. And
that makes me sad sometimes because it just felt like
we were always fighting the next battle. We both had
a very deep faith and we we really enjoyed each
other's company and were best friends, but it was so
(39:08):
hard to carve out those fun times together because of
all of the challenges, all of the brain surgeries, um,
that felt like were occurring almost every couple of months, honestly.
But I remember some of the happiest times of my
life were when we were first married and we lived
(39:29):
in a double wide and we were just making enough
money to survive. And I had Caleb, and we were
just blissfully unaware of what was coming around the bend
for our lives together. But I'm proud of that marriage.
I'm proud of how we stood firm in our faith.
I'm proud of how he brought glory to God through
(39:52):
his struggles, even up until the very end. And then,
you know, marrying Ryan. We did get married very quickly,
and we recognized that in that decision. We did not
necessarily process and grieve the loss of our former spouses
(40:13):
prior to coming together. And in fact, we kind of
grieved and processed together, which was not necessarily the best idea.
And in looking back, we should have found somebody that
we could work through some of those feelings with rather
than dump it all on each other, because that's a
very challenging place to be like grieving the loss of
(40:37):
one spouse and falling in love with a new spouse. It's.
I can't even hardly explain it, but it's, um, just
a murky, messy place at times. But we did realize
early on, too, that if our marriage was going to work,
we had to be really intentional about spending time together
(40:57):
and really getting to know each other and cultivating that intimacy.
And so from the very beginning, we went on a
weekly date. We have been praying together every morning for
14 years. Um, and we would carve out time to
get away, just the two of us every year. And
those were intentional choices. We have never driven fancy vehicles
(41:18):
or gone out to eat all the time, but we
do set aside money to go on those date nights
and to spend that week away every year to reconnect,
because we wanted to give our eight children the gift
of a healthy marriage. And so that was a choice
very early on that we committed to.
S4 (41:38):
Yeah, I was talking to a gentleman recently whose wife
died and he remarried, and he was saying in our conversation,
he said, you know, we each feel freedom to talk
about our former spouse, you know, to to bring up things.
If something happens. It reminds me of my wife, you know,
(41:59):
she's happy for me to share that. And she does
the same thing. Have you all found that to be
a part of your your communication or or is that
not been a part of it?
S2 (42:11):
Um, it's changed initially. I think there was some insecurities
that came up when we would bring up the former spouses.
And part of that was, you know, when somebody dies,
there's a sainthood aspect. And so every memory would be
this beautiful memory while the two of us are Battling
(42:36):
through this new marriage and trying to find our way.
And and so there was some insecurity in the initial stages,
and we've had to figure out how to walk through
that gracefully with one another. 14 years later, now that
we have our own shared history. We've been raising these children.
We feel very firmly established in our love for one another.
(42:59):
It's very different, and those conversations arise quite often where
something will remind us of that former spouse. So I
think just recognizing that sometimes it takes time to build
that history together and to build that trust and that
love to, because in those initial stages, you're kind of
(43:19):
running on passion and endorphins and not so much the
trust and the, the, the foundation, you know, of what
truly solidifies you to each other.
S4 (43:31):
Takes time, takes time to build that sense of confidence
with each other. And I think, I think it would
be more difficult in a second marriage than it would
be in a first marriage. I mean, we all have
to do that in a first marriage as well, you know,
because there's a whole lot we don't know about each
other when we get married, and we have to work
through all of that. But I think in a second
(43:53):
marriage it would probably be even more difficult. So I'd
just say a word to the caregiver who's listening, who
just feels hopeless, you know? It's just too overwhelming to them.
What would you say to them?
S2 (44:05):
I think hopelessness comes from a feeling that you're alone.
And I would just say to that caregiver, you're not alone.
God is right in the midst of your suffering. He's
right in the midst of the mundane and the monotonous
and the screaming and the diaper changes and the feeding
and all of it. God is is right there, just
(44:26):
as he was with Jesus, his son, in the Garden
of Gethsemane when He begged his father in heaven, please
take this cup from me. But then surrendered and said,
but not my will, but yours be done. I would
just encourage this individual to surrender and to recognize God
is right there, and to invite him into your your
(44:48):
struggles and allow him to strengthen you and sustain you.
S4 (44:52):
Well, Jess, I really appreciate you being with us today,
and I think this book is going to help any
caregiver out there, and we just want to help get
the word out, because I think it's so important. And
I think also encourage them to go to the website,
your website, and Chris can share that with us again
before we go off the air later. But thank you
(45:13):
for being with us, and thank you for allowing God
to use all the hard stuff in your life to
bless the lives of others. So thanks for being with us.
S2 (45:24):
Yeah, thanks for having me.
S3 (45:26):
What an encouraging hour with Jess, Ronnie, Ronnie. E. And
if you want to find out more about the book,
go to. Building relationships. Does caregiving with grit and Grace
is that title? We also mentioned the documentary unseen. You
can find out more about that at caregiver, doc.com or
(45:47):
the Lucas Project.org has some great information for you there too.
The Lucas Project.org.
S4 (45:55):
And next week how to discover the power to create
a marriage. You and your spouse love here.
S1 (46:02):
Doctor Bob Paul's encouragement in one week. Our thanks to
our production team, Steve Wick and Janice. Backing building relationships
with Doctor Gary Chapman is a production of Moody Radio
in association with Moody Publishers, a ministry of Moody Bible Institute.
Thanks for listening.
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