August 23, 2025 • 48 mins
Today's episode of Sunday Service by Pray.com features Focus On The Family
Three moms open their hearts about raising children with special needs—the grief, the joy, and the faith that carries them through. In this candid conversation, discover how God’s presence transforms pain into purpose and gives strength for the journey.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Finely, brethren, whatever things are true, whatever things are honest,
whatsoever things are just, whatsoever things are pure, whatsoever things
are lovely, whatsoever things are of good report. If there
be any virtue, and if there be any praise, think
on these things Philippians four eight. Heavenly Father, help me
(00:24):
to always fill my mind with thoughts that are pleasing
to you. Help me to see life and the people
with your eyes of love, and look at the heart
of a person and not the externals. Help me to
dwell on what is true, for you are the way,
the truth, and the life. You are the one, true,
(00:46):
living God, and I want to always evaluate a situation
through that truth. Help me focus on what is honest,
just and pure. There is so much corruption in this world,
filled with lies and perversions. Help me counter that with
your vision of loveliness. Every one deserves love and is
(01:09):
precious in your sight. You have called me to be
a royal priesthood, so help me think and act in
alignment with that noble character. Help me to be humble
and authentic, not phony and pretentious. Help me bring out
the best in others, and always look for the good
(01:29):
and not the worst. You see what is beautiful and
lovely in me, and that is your son, Jesus. Teach
me to look for the beauty in every situation and
not the ugly. It's too easy to point fingers and
judge and condemn those who don't agree with me. Forgive
(01:50):
me for being quick to judge others and think the worst.
I want to praise the good reports and encourage those
who are growing in faith and virtue in Jesus' name. Amen,
thank you for listening to today's Daily Prayer for more
inspiration and an incredible message from our feature pastor. Stay
(02:13):
tuned to pray dot COM's Sunday service.
Speaker 2 (02:23):
And I remember sitting in the car and I just
I was just crying, and I remember the Lord just said,
grief is an ongoing part of your journey throughout your
child's entire life. And seventeen years later, I see that
so clearly because recently it's him not getting a driver's license,
you know, it's him saying to me, Mom, why can't
(02:45):
I be like my older brothers and play basketball?
Speaker 3 (02:54):
Amy, Sarah Carrie, welcome, Thank you for having us. It's
so good to have you here. And I said this
a moment ago off Mike but your heroes and your
husbands as well, and just in that you don't have
what some people consider normal, right, the normal situation, so
you get a lot of curveballs, and we want to
(03:16):
talk about that today. Let's start with a quick overview
of each of your family situation. Amy, you have the
A name, so let's see you know, we're right back
in school. What's your situation for the listeners and viewers?
Speaker 4 (03:29):
Well, and Amy Brown. I live in Michigan with my
husband David. We've been married thirty eight years. We were
high school sweethearts. We have three biological kids, and then
we brought three adopted kids into our home. When we
brought them in our home, we did not realize that
they had disability because they didn't have physical disabilities, right.
(03:49):
Two of our daughters have attachment disorder and mental health
struggles feed alcohol. And then our son we adopted from
an orphanage when he was ten. He lived in Bulgaria
and we adopted him and he also has attachment and
mental health issues. But he also has a physical disability
called Arthur Gray Pos's, which kind of looks like polio
(04:10):
as small statued, very difficult time walking, can't vent his joints.
He's fairly self sufficient, so we knew that he had
that physical disability, and we knew that he would have
some issues because of being raised in an orphanage. So
that's our family six, and we're.
Speaker 3 (04:29):
Going to dive more into that story because the demands
that that has placed on the family are quite steep,
and you know, it helps people connect with what's required
when this happens. And so all right, Sarah, let's talk
about your family history.
Speaker 5 (04:43):
Yes, I'm Sarah Cleme. I live in Missouri with my husband, Craig.
We've been married for We just figured this out last night,
twenty seven.
Speaker 3 (04:51):
Years this year, congratulations.
Speaker 6 (04:55):
And we have two sons.
Speaker 5 (04:56):
Our oldest is almost twenty four and our youngest is
almost twenty. And our youngest is the one with disabilities.
His name is TJ. And he was diagnosed at his
eighth birthday. He just wasn't walking properly and we took
him in for physical therapy and somebody noticed his calves
looked very defined, and somebody just knew what to look for.
(05:17):
So it's a rare form of muscular gystrophy. It's aggressive, progressive,
and it's terminal and at the time of diagnosis. He
was given a life expectancy of average of twenty three.
So much has been done that now we see men
living into their thirties, sometimes even forties. So that was
our story. We had no clue until one day everything
(05:39):
flipped on its head.
Speaker 3 (05:40):
Yeah, all right, Carrie.
Speaker 7 (05:42):
Hi, I'm Carrie. I'm from Ohio.
Speaker 2 (05:44):
I've been married to my husband, Bruce for twenty four
years this year.
Speaker 3 (05:48):
This is not a math test, by the way, make
sure you guys know how long you've been married.
Speaker 7 (05:52):
Yeah, it's easy because we were married in two thousand.
But yeah.
Speaker 4 (05:57):
Yeah.
Speaker 2 (05:58):
We have four kids that are twenty, nineteen, seventeen, and fourteen.
Three sons and then a daughter at the end. And
our seventeen year old son, Toby, was born with Spina beeffitta.
He was actually prenatally diagnosed. I went in for my
twenty week aultarsound, and then when he was two and
a half weeks old, he went into respiratory failure and
we went back and spent over two months at the
hospital there in Columbus, Ohio. When he came home, we
(06:20):
had a medically fragile baby. He was hooked up to
a feeding pump twenty hours a day had a trake
and a ventilator. He still has this trake. He's still
on his ventilator when he sleeps. And we've also I
usually call myself the hospital stay expert because he's had
over sixty surgeries in his lifetime. Most of those were
within the first fourteen to fifteen years of his life.
And we've ridden a lot of rollercoasters and had a
(06:43):
lot of curve balls.
Speaker 3 (06:44):
Yeah, let me start the other direction now, So Carrie,
I'll start with you. When you received the diagnosis and
your world changed, How did it make you feel? How
did you respond to that? Is it a you know? Again,
for those of us that I have not had that situation,
help us better understand what that is like when the
(07:04):
doctor sits down with you and says, well, this will
be what the rest of his or her daughter's son's
life will be like.
Speaker 2 (07:12):
So well, first of all, it was devastating. My husband
said that he could tell by the doctor's face that
something was going on.
Speaker 7 (07:20):
I was a little bit oblivious to it, and actually.
Speaker 2 (07:24):
He did almost pass out, and I can tell that
story with his permission. It was kind of some leving.
It was overwhelming in the moment, but it was.
Speaker 7 (07:31):
His stomach dropped.
Speaker 2 (07:32):
It was completely overwhelming, and I remember going and sitting
in the car and just you just have a certain
expectation of what your life's going to look like. Our
kids are eighteen months apart and then twenty two months apart.
So these two little healthy baby you know, taller boys
at home.
Speaker 7 (07:47):
Life is great.
Speaker 2 (07:48):
And then all of a sudden, and I had some
experience with disability. I knew a girl was spinding benefit
in our church and had grown up with a friend
that had Down syndrome. But I remember thinking growing up,
I don't want to be a mom. I don't want
to be a special needs mom. And there's a lot
of grief that is actually I've learned ongoing through the journey.
(08:09):
It wasn't just a one. In the beginning, I thought
it was just one and done, and it's not one
and done.
Speaker 3 (08:13):
Yeah, how about you, Sarah.
Speaker 5 (08:16):
I actually worked for an orthopedist at the time, and
he was the one that put my son into physical
therapy just because he had an awkward gait. And I
took a phone call. The receptionist just happened to step away,
and it was New Year's Eve twenty eleven, and I
took a phone call and they said, we have a
concern with a patient, and I knew it was the
(08:37):
pediatric physical therapist and we only saw adults and my
son was the only one that we had referred over there,
and so kind of stick my head in the sand,
I just said, okay, well can I have the patient's name?
And he said my son's name, and I said, well,
I'm his mom, and he just wouldn't talk to me,
and I could tell in his voice. So I called
the doctor that I worked for and he said, well,
(08:58):
we actually have another that noticed two days ago because
we had him into a different doctor for some dyslexia.
And they said not to panic and not to get
on the internet. So the first thing I did was
get on the internet. But I realized I didn't know
what I was looking for. I didn't even know how
to spell it. And so we waited two months before
(09:19):
we were able to get in to see a doctor
about two hours away, and she took one look, he
got up off the floor. She had him walk a
little bit, and then she had a nurse take him
out to a play area and she said, well, you
have a Duchen boy, and here's a free camp and
we'll see you back in six months.
Speaker 6 (09:38):
Just take him home and love him.
Speaker 5 (09:40):
There was basically basically she's there's nothing you can do
but love him.
Speaker 6 (09:43):
And so wow, that.
Speaker 3 (09:45):
Sounds so in many ways right, but empty it did.
I mean, that's all I can do.
Speaker 6 (09:52):
Right right? And we had no no.
Speaker 5 (09:54):
I had looked at it because I had gone on
the internet and I noticed he was doing something called
a Gower's maneuvers, how you stand up off the floor,
and I recognized it immediately.
Speaker 3 (10:05):
It was different than other kids.
Speaker 5 (10:06):
It was different, yes, and it was very specific to
this specific diagnosis. And my husband just refused to believe it,
so he started he started arguing with the doctor.
Speaker 6 (10:17):
He's like, well, can't it be this well, can't it
be this type of muscular distrip fee?
Speaker 5 (10:20):
And I just finally put my hand on his leg
and I said, no, it's dushen.
Speaker 6 (10:23):
So we knew we needed to do something.
Speaker 5 (10:26):
Not we weren't under any illusions of or delusions of curing.
Speaker 6 (10:31):
It, but we knew we needed to.
Speaker 5 (10:33):
We we had loving them downpat we needed to do
something to give them a quality of life.
Speaker 3 (10:39):
I can't imagine that feeling of the unknown but known,
right right, it's a weird comment. Amy. How about how
about you that moment when you're you know, you adopted
your your kids, and you're going, okay, there's something going
on here. Yours is very different because it's not physical, right,
And in that context, I'm so glad that you're part
of this because it's it's a different thing, an observation
(11:02):
that trauma has caused mental disconnections for these children. So
describe that moment when you and your husband are going.
Speaker 4 (11:09):
Okay, right. I didn't have like a minute where someone
handed me a diagnosis. We adopted our first child and
we did not know any teaching or understanding about trauma.
So initially I just thought she's different because she's not
my biological kids. You know, she's acting differently. My first
(11:31):
aha moment was one that filled me with a lot
of guilt and shame because she had a seizure. She
was having some kind of X ray amri I can't remember,
and she was in the machine and when they pulled
her out of the machine, then technician said, okay, Mama,
pick her up and hold her like she likes to
be held. And I stood there like frozen, and my
(11:53):
gut just dropped like, I don't know how she likes
to be held, and I felt so much shame, like
what kind of mom does know how to hold their child?
And that it didn't occurred to me at that moment,
And I did not know in that moment that she
had fetal alcohol and attachment issues and she didn't like
to be held right And looking back, I can remember
she'd push us away, but she would go to strangers,
(12:15):
which is really common in kids with attachment issue, you know,
because we're the they're not. They don't feel safe with us,
the people that know love them the most and the
nurturing caregivers. So for us, it was just a journey
of what's going on with this kid? And with mental
health and invisible disabilities, it's a hard journey to figure
(12:36):
out what the actual diagnosis is.
Speaker 3 (12:37):
Yours is kind of unraveling as you go over the
years because it's not a physical again, a physical diagnosis.
Let me let me ask you about the issue of grief.
I think, Carrie, you you started that, you mentioned that
briefly about grief. You almost feel guilty having grief, you know, like,
(12:59):
what kind of Christian am I if I can't do this?
And you know, we again, we tasted that with our
foster experience, but we didn't have to live it every day.
That could be quite a load a the grief, which
is normal. So I guess the question is, how do
you grieve that in a way that's healthy and not
(13:20):
adding more shame to whatever shame you might have already.
Speaker 2 (13:24):
I think one of the things we've talked about and
I've learned is there's a lot of shoulds around grief.
I should not feel this way, or I should feel
this way, or my husband should using this support for me,
or he should be grieving at the same rate that
I am grieving. And I think that's one thing that
I've learned is that we can't live in the shame
of the shoulds of grief. I know I had a
(13:47):
friend tell me once, you know, because I haven't lost
a child, I don't feel like I should be grieving
because my child is still alive, but if there's still
loss there, and I think identifying and naming the loss
and what that looks like is really important and speaking
into that. I can remember my son was five years old.
We had just gotten out of a week long hospital
stay where we had taken the ambulance to the hospital,
(14:09):
and then we left the inpatient hospital stay and went
to a doctor's appointment and found out he needed surgery,
and that five days stay. My older kids, you know,
I missed out on games, I missed out on school activities.
My daughter was home and she was, you know, a toddler,
and she didn't know where mama was.
Speaker 7 (14:29):
And I remember I actually went to the library.
Speaker 2 (14:31):
To return some books that my daughter had kind of
like ruined as a toddler.
Speaker 7 (14:35):
You know how they just kind of do whatever they
want with books.
Speaker 3 (14:38):
We have no idea where you're doing.
Speaker 2 (14:40):
And I walked up to the desk and the lady
just she had no compassion whatsoever. I was going to
have to pay full price to replace these books. And
I remember sitting in the car and I just I
was just crying, and I remember the Lord just said,
grief is an ongoing part of your journey throughout your
child's entire life. And seventeen years later, I see that
(15:02):
so clearly because recently it's him not getting a driver's license,
you know, it's him saying to me, Mom, why can't
I be like my older brothers and play basketball? And
I'm also identifying that he's on his own grieving journey
because he's verbal and he can process this with me.
I think one of the things that I've learned about
grief is that it's important for us to feel those
(15:26):
feelings and when the waves of grief come, you know,
I saying, I journal and then also just to turn
it over to the Lord repeatedly. And I've found so
much comfort in scripture of David and job and being
honest with God.
Speaker 7 (15:41):
But that also takes trust with God.
Speaker 3 (15:44):
That's so true. Amy. Let me ask you about your
lilac bush comparison there, because I thought it was really
good and explain it to us.
Speaker 4 (15:53):
Well, we had moved into a new house and I
was really looking forward to the lilac bushes that were
gonna blow in the spring. I love lilacs, and I
noticed after we'd been in the house a few months
that the lilac wishes looked dead, and I got kind
of crazy about it. I looked at all my neighbor's
lilac bushes and I was like, can I get fertilizer?
Speaker 6 (16:14):
Yeah?
Speaker 4 (16:15):
Can I put fertilizer? I actually told my husband can
we rip them up and buy newes? I was so
focused on wanting this beautiful flower. And I tell that
story in the book because with grief, like I was
so focused on what wasn't there, that's all I could
think about. How can I make what's not here be here?
And I think it's really common in all special needs families,
but with kids with behavioral issues and kids that don't
(16:37):
attach to you, there's not a loving bond there and
that's very painful to walk through. And so a lot
of times, just like my Lilacs, I just didn't want
to wait. By the way, they didn't eventually bloom, they
were just late bloomers. I wanted to take all my
focus and energy to make it make them bloom. And
I think grief can sometimes look like that. It can
(16:57):
look like trying really hard. It doesn't always look like crying.
It looks like anger trying really hard. And so I've
had to learn I am not going to have the
relationship with my kids with attachment disorder that I wanted,
But I can see what is there. I think when
we continue to look at I wish it was this.
I wish we could just get here. And I do
(17:18):
think with behavioral issues, because it's kind of a silent
suffering you're doing because the behavior is hard. People don't
understand what's going on. They think your parenting's terrible. That
you kind of isolate yourself and say, if I just
try harder, if I just find the right combinations, this
is going to be better. And I had to learn
to say, these are the small moments of grace and
(17:41):
beauty that God has put in my life every day.
They may not look like I thought they were going
to look, but that this helps me. It's like small
SIPs of grace every day instead of looking at this
big destination. I just had to learn that to be
a attentive to those moments. Yeah, of what we have.
Speaker 3 (18:02):
You know, as you're describing it for us, it sounds
like an amplification of what we all experience. But you
guys have this magnifying glass on it that makes it
bigger and right in your face. Whereas we're all learning
these lessons, some of us without as much acuity as
you're seeing it, because again, it's so right there for you,
(18:26):
and you have to deal with it, whether it's grief
or loss of a dream or the things you're talking about.
That's what I'm hearing from your hearts. And I don't
know that we that don't have this situation are as
aware of our own shortcomings and issues as you will be,
because it's just right there is that fair? Have you
noticed that as moms do? Do you feel like some
(18:48):
of the moms that don't have special needs children like
they're kind of back in at square one with some things?
It does require you to be in tune with things
that many of us would not be in tune with.
Does that resonate with you?
Speaker 5 (19:02):
Yeah, I think it's like a crash course. It's almost
you know where you're it seems like you're flying through life.
And I have joked around that my life sometimes seems
like that whack a mole game that you know, you
go and it's like like, Okay, I got it, I'm
gonna pop my head back up and nope, life says, no,
you don't. And but that's just it is. It's amplified.
(19:25):
And I think that's a really great word.
Speaker 6 (19:28):
It's not.
Speaker 5 (19:30):
Ours isn't worse or better than anybody's. It's just we
are in this twenty four seven and some of us
it's even in the middle of the night, it's alarms
going off or things happening or you know, just surgeries
and here we go again.
Speaker 6 (19:45):
And so yeah, it's.
Speaker 3 (19:47):
Well, and it gets down to some basic things about
us as human beings. I mean at the core. I mean, John,
how many programs does this theme come up? Our selfishness?
I mean you look at the context of marriage, whoa.
I mean, our selfishness rises, and then parenting our selfishness rises.
You guys, you get it beat out of you. I mean,
(20:07):
there's selfish I'm not selfish. I'm just trying to survive.
And it's just there day after day. But the irony
of it, the good thing of it is you learn it.
I mean, what God is trying to teach all of
us and becoming more selfless you have to, right, And
(20:27):
it's an odd thing to think of that as a blessing. Really, yeah,
do you feel like, Okay, in the big scheme of
my spiritual development, this is a great blessing.
Speaker 7 (20:41):
I think.
Speaker 3 (20:41):
So.
Speaker 2 (20:42):
It's taken me a long time to get there, and
there's certainly days I don't feel that way.
Speaker 7 (20:46):
You know, Oh, of course it's but I think.
Speaker 2 (20:49):
If I'm completely honest, I know I have said this before,
I don't think if we would have had Toby, I would.
Speaker 7 (20:57):
Have relied on God the way that I've learned.
Speaker 2 (21:00):
Too, because as Amy said, I was grasping for control.
As soon as I kind of got over the sorrow
of his diagnosis, all of a sudden, it was like, Okay,
here you go. You have this doctor's appointment, this tour
of the Niku, this surgeon to meet with, and I
just started controlling everything. And so if the Lord hadn't
(21:20):
allowed this in my life, it would be a really
different person. It might have been another trial that he
allowed to happen.
Speaker 3 (21:28):
But it's like the Lord to turn everything upside down.
Those of us that don't struggle with the things you're
struggling with, you know, wow, aren't we happy? But we're
not learning the lessons that we should learn. And then
in God's economy, you're so far out in front of
some people, maybe most people. You know, we're right here
(21:49):
on earth. Everything our existence is about here. And now
it's hard for us to think of heaven and eternity
and no more tears, no more sorrow. How does the
idea of thinking to the future for your children, where
they are healed, they are complete there with the Lord,
they are forever going to be okay, do you think
(22:13):
about that?
Speaker 5 (22:14):
I think in our situation, because we have that terminal
word that is always over our head that I know,
short of something catastrophic, I will bury my child. And
so it took me a long time to realize. It
was almost like God was like, but he's not yours,
he's alone, he's mine, and he's exactly the way I
(22:36):
want him, and I will get him back and have
him exactly the way I want him. So that took
a lot of time to figure that out. But I
know I look to heaven and I think kind of
almost what you said, your children are. I can't wait
to see how.
Speaker 4 (22:53):
He is.
Speaker 5 (22:53):
But I just think his heart is exactly the way
his heart needs to be.
Speaker 6 (22:58):
Right now.
Speaker 5 (22:58):
We don't have the behavior issues. In fact, I have
the opposite. It's always I love you, I love you,
I love you all day long. So it's it's different.
But you know, when you have that terminal diagnosis, heaven
is definitely something to look forward to and right and
I think that we did in a way, but it
really shines a light on it. It makes you put
(23:20):
there's something behind the words that you speak.
Speaker 6 (23:23):
As a Christian.
Speaker 5 (23:24):
I think I didn't realize how maybe not superficial, but
how much I didn't truly believe that heaven was something
to look forward to until I knew it's right on
the horizon for my child.
Speaker 3 (23:35):
Yeah, yeah, that's so good, jump in.
Speaker 4 (23:38):
Yeah.
Speaker 2 (23:39):
I think for me, I just think often of that
verse that talks about our light in momentary afflictions, and
it doesn't feel light or momentary at times. My husband
said one time, I can't wait to throw football at
Tobe in heaven and see him run. And the way
that hope encourages me is I know that whatever we're
going through a daily basis, it is just temporary. It
(24:01):
is short in light of what God has for us
in eternity, and that makes it worth it.
Speaker 3 (24:07):
Yeah, and again that hope becomes so tangible for you,
whereas others it still may be murky or foggy, as
you said, Sarah, for those of us that aren't in
that position to hope for heaven. I mean, it sounds
odd we talk about that brutal truth where things aren't
flowing well and maybe you shake your fist at the Lord,
(24:29):
or really, how did you manage those moments of doubt
and stress and anxiety and Lord, seriously, why me kind
of thoughts. Let's kick it off with you, Sarah.
Speaker 5 (24:42):
I likened right after diagnosis to a fog. Once that
fog started to lift, there was a lot of anger
for me and a lot of doubt. I never doubted
that there was a God. I never doubted the magnitude
or the magnificence of him. I doubted the loving of him.
How could a loving God, you know, watch my son
(25:04):
go through this? And it was really difficult to go through.
And I realized I had a conversation with God in
the closet, and it was because the closet was the
safest place nobody could hear me.
Speaker 6 (25:17):
And I was just like, how could you do this?
Speaker 5 (25:20):
I can't watch my son die? And it was just
like he said. He was like, I know how it
feels like it's difficult, and that gets me every time.
But I was so angry for so long, and it
was almost like he said, I know your doubts. Why
are you trying to sugarcoat this. I still went to church,
we still sang, we still taught Sunday school. We were
(25:41):
the quote unquote perfect little Christians on the face of it.
But I did not I was so angry. I didn't
want to. I would leave during during worship songs. I
deprogrammed the Christian stations off my radio from my car.
I was just like, I can't this all. I felt
like such a hypocrite, and so so I decided, if
(26:02):
I truly don't believe in the kind of God that
I need to believe in, then I'm going to prove
it wrong. I'm a statistician by trade, and I kind
of pulled out my nerd hat and I'm like, I'm
diving in. And the more I dove in, the more
he was giving me answers right. And he wasn't angry
that I was angry. He was like, Okay, finally you're
(26:23):
bringing this to me. I've known you're angry all along.
I've known you're doubting all along. So let's get into it.
And so we did, and it was everything I've said
it before that my doubt really fortified my faith. And
so now even though I will have doubts, it doesn't
mean that I don't have them. I still will say, Okay,
why God, why is he doing this? My son just
(26:44):
stopped walking, and I'm like why. I've learned to still
It's not that I'm asking a wrong question. It's not
that I'm asking why is wrong. It's now I'm like, okay,
why why why are.
Speaker 6 (26:59):
You doing this?
Speaker 5 (27:00):
And what are we supposed to gain from this? What
do you want us to put forward from this? It's
just switched a little bit. It's not like, why are
you doing this to us? It's okay, why are you
letting us?
Speaker 3 (27:10):
Well? I really appreciate that. And you know, kind of
the imagery I'm getting is you're digging with a shovel
and you're finding a gold nugget. But let me press
on a little bit, just to being able to make
that transference from doubt to I guess what I would
describe is belief, but with you know, with regret? Is
(27:32):
that a good way to express it? And is that
a different stage of belief? You know? Now? It's not
maybe God isn't there because I'm not in a better place,
But he's there, and what does he want to do
with this? With me? Right?
Speaker 8 (27:45):
Right?
Speaker 5 (27:46):
I can see I think with time you can look
back and see how he had.
Speaker 6 (27:51):
His hand and everything right.
Speaker 5 (27:52):
And when you are on your knees in a closet,
angry and crying, and doubting you're not. It's almost like
you're not lifting yourself up to open up to God.
I was so busy trying to keep him out and
trying to be angry at him. I wasn't letting anything
else in.
Speaker 3 (28:08):
And so that's so good. And again it's a process,
right Carrie, coming back to you where Sarah was bold
enough and open enough and honest enough that that tension
between God or you're real? And if you're real, why
isn't my life better?
Speaker 2 (28:24):
You know? The week of my son's diagnosis, my husband
turns to me and says, well, if not us, then
who to raise a child like this? Like we have faith,
we have good support, we have a great church. But
somehow I thought that because I had been faithful, that
it negated any future suffering in my life.
Speaker 7 (28:42):
And boy did it hit me hard.
Speaker 2 (28:44):
And I began to doubt that God loved me. And
you know, when your prayers don't get answered, when God
clearly says no.
Speaker 7 (28:53):
You just you wrestle.
Speaker 2 (28:54):
I think about take up wrestling with the angel and
just you know, and Sarah wrestling in her closet, and
I think one of the things that I've come to
realize is God's love is so multifaceted and how he
shows it and I just have to have that open
posture that Amy talks about and find it in different ways.
And I experienced it just differently. It just wasn't what
(29:16):
I thought it was going.
Speaker 6 (29:17):
To look like.
Speaker 3 (29:18):
Yeah, that idea that in our limitations of emotions and
our way to process things, there it does feel like
it's punishment. What have I done more to deserve this?
And I think he's saying, that's not the equation. You know,
this is going to be something you're all going to
be learning from and it'll deepen your relationship with me
(29:39):
if you let it. And that's really that point Amy,
the shaking of the fist at God. You guys are
so brave to say this, but I don't ask that
of a lot of guests. Tell me your like weakest
moment with the Lord.
Speaker 4 (29:53):
Well, when you adopt, it's not a surprise, right, Like
you don't get a surprise adoption. So one of the
struggles I had was, Lord, we prayed so hard about
this each time we made this decision and felt like
you let us here, and now it's just so hard.
I remember a lady saying to me, and I tell
the story in the book. She comes up to me
and says, I just can't wait to see what God's
(30:14):
going to do in your family. And I slept on
a good Christian girl smile. He went yeah. And then
I went home and I laid on my bed and
I bowled my eyes out, and I said to God,
what have you done? I mean, that same day my
daughter had been expelled again from school. I mean, I'm
kind of not stressed by that anymore. It's kind of
a norm for us. And I just thought, what have
(30:37):
you done? Amiss, Like I've done this God, and what
have you done? And one of the things that I
felt like God continues to show me is Amy, you're
so focused on the destination. If we can just get
ourselves a little bit together, you're forgetting your companion, which
is Christ, who walks through us in all of this.
And you know, there's a story in the Bible about
(30:58):
Abraham and Sarah and they have Hagar, the maid servant.
Sarah's not being very kinder, and she goes out in
the desert and God sends her back to the hard situation.
But she says, you are a gud who sees me
and I've come to realize that being seen makes all
the difference regardless of what we're going through.
Speaker 3 (31:18):
Well, and in your situation adopting children, that's where you know,
if you don't get a handle on that your emotions
can you can lose it. And that's the worst possible
thing with the kids, right, because they're pressuring you to
test you. Do you love me? Even if I do this?
Even if I get expelled from school? We still love me?
I don't think so, because I'm unlovable. That's really what
(31:40):
they're saying. And so the long arc for you is
if you and your husband continue to demonstrate love to them,
that's probably the biggest victory you will have. Right.
Speaker 4 (31:49):
And it looks different, and it looks different, it looks
completely different than another child.
Speaker 3 (31:54):
Yeah, let me let me turn a corner here, another
intimate question. I'm sorry, but this is what people are
going to be saying about in your own marriages. The
pressure that this creates, having a you know, physically handicapped
or mentally handicapped child. The divorce rates are quite high.
(32:14):
And so if again I can ask you to be
vulnerable there, how do you safeguard your marriage? How do
you protect your marriage. How do you I guess in
some ways prioritize appropriately when these children need so much
of you.
Speaker 2 (32:27):
I think part of it, too, has been just allowing
the Lord to have each of us on our own journeys.
It's not expecting my husband to be on the same
grief journey that I've been on. And just recently he
was processing some grief and I was actually a little
frustrated with him, like, how do you not know this
(32:49):
part of Toby's story from those early days he's preparing
Bruce was preparing for a testimony for his men's group
at church. He kept calling me back into the office,
and I thought, why how do you not know this?
Speaker 3 (33:02):
And it's interesting doing to you.
Speaker 7 (33:04):
Yeah, I was.
Speaker 2 (33:05):
Just reacting, you know, And then I was I went
back in the kitchen, I was washing dishes, and I
just felt like the Lord said, he's on his own
grief journey. You have to let him process this in
his own way. And then I think it's just you
have priorities in different seasons. There were you know, the
season of the hospital stay when we were in for
(33:27):
sixty four days, that we were ships passing in the night.
But we also found the help that we could have.
We had people sitting with Toby' so occasionally we could
just grab like two seconds in the cuffeteria together and
just understanding what your limitations are, but also making that.
Speaker 7 (33:43):
Still a priority.
Speaker 3 (33:44):
You know, I would think and correct me if I'm wrong.
You know, where you and your husbands are connected, you're
carrying so much stress and such a load that it
becomes pretty easy to go at each other because where
else do you go.
Speaker 5 (34:00):
Sometimes there's a I did not handle that so well,
So let's backtrack and go at this a different way.
Speaker 6 (34:07):
Yeah, there's some apologizing.
Speaker 2 (34:09):
And I think it's it's understanding that, like, we're in
this together, and we're certainly better together, and we would
be a part and so it and there have been
times that we've gotten arguments over the most ridiculous things,
and I think it's asking that deeper question, Okay, why,
like what is it?
Speaker 7 (34:29):
What's the real thing that's going on here? Yeah? Is
it grief? Is it frustration? Is it anger?
Speaker 2 (34:34):
And then we have actually done that where we've said, okay,
let's back up five minutes and start let's start over,
let's just restart this conversation.
Speaker 3 (34:41):
Yeah, Sarah, I understand you have a observation. I guess
I would call it about not overlooking those joyful moments
that come. And again, you could be so buried in
life that you don't and you know all of us
have that potential to not see God. Moments are joyful moments.
(35:02):
But you're on the beach, I think in this story,
and something joyful happened, what was it? What did it
teach you?
Speaker 5 (35:07):
More importantly, So, we were walking on the beach and
it was the first time our youngest son with disabilities
had seen the ocean, and I love the ocean, and
so his just eyes lit up and it was just
you could just tell something miraculous was in front of him.
But he was struggling to walk through the sand and
he was eight at the time, and my oldest son
(35:28):
was twelve. My oldest son is just very athletic, and
he just bounded into the ocean, and my youngest son,
who's eight, was almost like a one year old where
we had to stand and hold him because even a
light wave would throw him down. And eventually he got
bored because there's only so long you want mom to
hold you in a foot of water, and so he
(35:50):
wanted to go back to the room, and my oldest
son came back and he said, oh, watch this, And
so they laid in the surf and let the waves
take them. And it was my son had said, you
just let the waves take you back and forth. They'll
do all the work.
Speaker 6 (36:06):
That's what he said.
Speaker 5 (36:07):
And it was just like God was just saying, see,
if you just let me do the if you just
relax and let me do it, I'll take you to
and from everything.
Speaker 6 (36:17):
And the joy of that.
Speaker 5 (36:19):
It's one of my favorite pictures of my boys, and
I can just see the joy in it. And my
oldest son taught us such a valuable lesson that My
husband and I were focused on the awkward gate, the
struggling through the sand.
Speaker 6 (36:31):
Is he going to be? Is he going to have
fun enough?
Speaker 5 (36:34):
And we just needed to stop and take in the
majesty around us, the waves, the boys laughing, and I
could have missed that.
Speaker 3 (36:43):
Yeah, that's so true, and I love that. That's one
of the most pleasurable experiences I have is hearing my
boys laugh together. It just, you know, in another room,
if they're messing around or whatever they're doing and they're
just happy. It just warms my heart, and that's got
to be true certainly.
Speaker 6 (37:00):
Yeah, It's almost like God was just saying, just.
Speaker 5 (37:01):
Lift your face, just lift it up for a second,
look around you, and I just realized I needed a
focus on the joy.
Speaker 3 (37:09):
How about that thought of our father in heaven, Heaven
sent that same sense of joy that when he sees
his children laughing. I think Amy turning that corner a
little bit for you, because again, you're dealing with more
mental stresses with the kids, not so much physical inability
or disability. That's got to be somewhat of a struggle.
(37:33):
And I think even in the book you referenced how
attachment disorder the children can learn to play espouses off
one another. Just again for a peek into that, because
it's so brutally honest. Describe that experience where the kids
are setting you up against your husband. And it's interesting
(37:56):
in a survival mentality that they learned to do this
at a very young age, that they could learn this
at six, seven, eight years old.
Speaker 4 (38:04):
Right, It's really common in kids with attachment disorder to
target the nurturing caregiver, which is typically the mom. So
an example in our home could be I could have
a raging child wanting to physically harm me, and then
Dad walks in the door and they turn on a dime.
Hi Dad, and it's like night and day. So my
(38:25):
husband has never fully seen all the behavior I've seen,
and I'm very grateful that he believes me. I've had
mom say that they had to put a camera up
and then their husband would watch the camera and go
on to get the full story, get.
Speaker 7 (38:40):
The full story, probably unbelievable, unbelievable.
Speaker 4 (38:43):
I think the struggle Dave and I have always been
a great team, and we have six and we have
to be a team. But one of my personal struggles
was I'm kind of the punching bag in some ways
and he's not. And I'm kind of jealous sometimes that
he doesn't right and he carries things than I do.
You know, he hears all that I have to tell
him about what we're walking through. So I had to
(39:05):
kind of come to terms with, Okay, we're on a
team together, and yeah, I'm getting the brunt of some
of this abuse that he's still believing me at least.
You know, some parents, some people don't have that. I
think that's where you get a lot of marital discord
when the husband's and divorced. The husband's like, I don't
know what you're talking about. This kid's a the light
right now.
Speaker 3 (39:24):
You're the problem.
Speaker 4 (39:25):
Yeah, you're the problem. And honestly, if I can say,
even from marriage, that's spoken over us moms with kids
like this a lot from church and friends and mother
in law's like you're the problem. This kid is And
that's really hard. That's really hard, and it makes you
feel shame, shameful and isolated. So I think the thing
(39:46):
that helped me a lot was knowing Dave's on my
team and being honest but being okay that he didn't
have to experience all of that. And you know, and
we've been to therapy and we do things together and
we have a very strict role that when we go
out together, he takes the phone call from the babysitter
of all the bad things that happen, and it's like,
is it what happens at home? Don't tell any.
Speaker 6 (40:07):
Because it is.
Speaker 4 (40:07):
I am immediately stressed again. So we kind of have
some things that we've that he's walls be built around
me that he takes the brunt of some of that
because he can hear all the bad things and go, Okay,
I'm like up all night worrying about all the bad things.
Speaker 3 (40:21):
Well, and I so appreciate it. Amy. I have friends
that have adopted from countries where attachment disorder is typical
because these kids never get touched. They're in cribs until
they're three four years old or older and they literally
don't get touched. And you know, it's such a sad
human experience and it impacts them dramatically, and boy, just
(40:44):
tears at my heart. And then many of those friends
have had to institutionalize those kids. That's a very common way. So, Man,
my admiration for you and your husband sky I to
stick with it and be there with them. Let's end here,
what can the church generally and Christians generally, what can
(41:05):
they do that's helpful? And then maybe mention things that
aren't so helpful, like little phrases we like to say,
and you know, I think you have some examples of that,
but let's just you know, again, let's just open that
up and you guys have at it. Both the positive
things that we could do churches. What could churches do
to help accommodate special needs children in all facets mental, physical?
(41:30):
And then what are those things that we say that
could really just take the legs out from under you.
Speaker 2 (41:36):
I think the biggest thing is listening to the families.
And also I think it's so important to educate your
entire staff, not just the buddies who are helping the kids.
Speaker 7 (41:49):
Because you do have families that.
Speaker 2 (41:50):
Come in and maybe you know their disabilities are hidden
or you know, I've come across parents that they've said, yes,
my child has you know, level and autism, but I
just didn't tell the workers at church because I just
wanted to see how they would handle it. And I
think it's important for there to be education across the
(42:12):
board on all levels because you know, I have a
nineteen year old son who's teaching first grade boys and
he needs to know how to you know, he obviously
has some level of understanding with his brother, but he
needs to know those things. And I think the one
thing that's not helpful is God won't give you more
than you can handle that versus taken out of context,
that you.
Speaker 3 (42:32):
Get that God won't give you more than you can
I can imagine that will come handle it for me
then right, yeah, yes, yeah, I mean it's sent with
the right intention, But man, does it throw salt in
the wound?
Speaker 2 (42:46):
Right, It's like, I don't. I couldn't handle this without
the Lord. So yeah.
Speaker 5 (42:53):
We have an elder at our church when we first
received the diagnosis. My husband's a deacon in our church,
and they asked us to come in and tell us
about nobody knew the disease. It's rare, and they said,
what can we pray over? And the first thing out
of my husband's mouth was our marriage because over eighty
five percent of marriage is in a divorce with duche
not and that's what we read at the time. How
(43:13):
true it was, whatever, but it scared us enough that
we're like, just pray over our marriage. And I have
one elder that will come up to me and he
puts his hand on my shoulder and he said.
Speaker 6 (43:21):
How are you doing. I'm like, oh, I'm good, fine,
you know, it's just fine. And he's like, how are
you doing?
Speaker 3 (43:29):
Right? He wants the truth and.
Speaker 5 (43:30):
He wants the truth and that's just it, and he's
present and he doesn't want the fine. He wants to
know and he will say, how can I pray for
you this week? And it is a week to week thing. Yeah,
And I think that that is I know someone is
there and I can say, Okay, well we have this
doctor's appointment coming up or whatever that might be for
(43:51):
the week, and I know he's praying over it. And
that's just knowing that there's people in our corner. And
it's not superficial, not that everybody's not that people are
being so official, but he wants, he wants the nitty gritty.
Speaker 3 (44:03):
Yeah, and that makes you feel seen. It does again, Yeah,
that he cares. Yeah.
Speaker 6 (44:07):
Like Amy said, it's just being seen.
Speaker 3 (44:09):
Right.
Speaker 4 (44:10):
We could have a small group of people that we
could go, look, can you pick up the prescription? Can
you come sit at the park with my child? So
I can drive in my car and cry for an
hour because I really don't want to do this anymore.
Just a small group of people that hear our stories
and look past the behavior. And I think that is
really important. A lot of the moms that have the
kids kind of kids I do, they've.
Speaker 6 (44:30):
Walked out of church.
Speaker 3 (44:31):
Yeah, I think of that. That's really saying maybe a
portion of that group walk away from the Lord.
Speaker 4 (44:36):
Right.
Speaker 5 (44:37):
Our church does a buddy program and so we started
to disability ministry and we have people we assign two
volunteers to each child. So these children know they're two
volunteers and they switch and we were like, okay.
Speaker 6 (44:49):
So this is the this is what makes them awesome.
Speaker 5 (44:52):
And here with my son, like when he's grinding his
teeth or he starts to click, you might want to
dig in or take him to the sensory room or
something like that. We tell them what to look for,
and when we pick them up, don't immediately say, well,
they hit so and so.
Speaker 6 (45:09):
With the cranky or they weren't listening.
Speaker 3 (45:11):
You know, it's give me the checklist.
Speaker 6 (45:13):
Yeah, it's just saying I enjoyed your child.
Speaker 3 (45:16):
Yeah. Wow, the power of that.
Speaker 6 (45:18):
Yeah.
Speaker 5 (45:19):
And then my husband, I have forty five minutes to
actually focus on the word and to worship.
Speaker 3 (45:24):
Well, you guys are saying so many strong things and
so many right things, and you know, in many ways
with our foster outreach, you know, one of the things
that we encourage Christian couples to do is look for
opportunities to do respite. And it's a big word. We
didn't understand what respite meant before we got into foster care.
It means like giving relief to a foster family so
they can have some margin. You know, it might be
(45:46):
shopping for them, doing their laundry, just something. And I
think the data as we've looked at it, if there's
five respite care families that come around and adoptive or
a foster family, they typically will be six usful in
that endeavor if they have that much help. But think
of that, that's a lot saying we need five families
to help us raise this child or these children. Right Well, listen,
(46:11):
you guys have done a stellar job, and our hearts
do go out to you, not in a way to
show you disrespectful sympathy, but man, God chose you for
a special assignment. Gives me tears thinking about it. Thank
you and your husbands for doing it and for doing
it well, and for teaching the sighted of us to
do it better and to know God deeper. So thank
(46:33):
you for being.
Speaker 6 (46:34):
Here, thanks for having for having us.
Speaker 3 (46:35):
Let me turn to the listeners and the viewers. Man,
what a great resource to the other side of special
navigating the messy, emotional, joy filled life of a special
needs mom. And you've heard their hearts and you know
what they're saying. So if this is something that would
help you get a hold of us if you can
make a gift of any amount, we'll send it to
you as our way saying thank you. If you can't
afford to do that, we'll send it to you anyway,
(46:57):
and trust others we'll cover the cost of that. Might
be a friend, there's somebody in your church. Maybe a
church should hold a few of these copies so they
can give them to families who come in that have
special needs kids. That would be a blessing. And there's
many ways you can use this, So get in touch
with us. As John mentioned, you know we've been doing
this for over forty almost forty five years now, right,
(47:20):
you're not going to surprise us. If you need help
to talk with a counselor et cetera. Just get a
hold of us.
Speaker 8 (47:26):
Our number is eight hundred, the letter A and the
word family eight hundred two three two six four five
nine wor stoped by the program description for all the
details and on behalf of Jim Daily and the entire team.
Thanks for joining us today for focus on the Family
with Jim Daily. I'm John Fuller inviting you back next
time as we once again help you and your family
(47:47):
thrive in Christ.
Speaker 4 (47:54):
You will be like.
Speaker 3 (47:56):
God, God and through it all, God's promise remain true.
Speaker 1 (48:05):
Follow me Apro and I make you great.
Speaker 6 (48:10):
This is the Chosen People. Listen to the Chosen People
at the Chosen.
Speaker 5 (48:19):
People dot com.
Speaker 3 (48:20):
That's the Chosen people dot com.
Finely, brethren, whatever things are true, whatever things are honest,
whatsoever things are just, whatsoever things are pure, whatsoever things
are lovely, whatsoever things are of good report. If there
be any virtue, and if there be any praise, think
on these things Philippians four eight. Heavenly Father, help me
(00:24):
to always fill my mind with thoughts that are pleasing
to you. Help me to see life and the people
with your eyes of love, and look at the heart
of a person and not the externals. Help me to
dwell on what is true, for you are the way,
the truth, and the life. You are the one, true,
(00:46):
living God, and I want to always evaluate a situation
through that truth. Help me focus on what is honest,
just and pure. There is so much corruption in this world,
filled with lies and perversions. Help me counter that with
your vision of loveliness. Every one deserves love and is
(01:09):
precious in your sight. You have called me to be
a royal priesthood, so help me think and act in
alignment with that noble character. Help me to be humble
and authentic, not phony and pretentious. Help me bring out
the best in others, and always look for the good
(01:29):
and not the worst. You see what is beautiful and
lovely in me, and that is your son, Jesus. Teach
me to look for the beauty in every situation and
not the ugly. It's too easy to point fingers and
judge and condemn those who don't agree with me. Forgive
(01:50):
me for being quick to judge others and think the worst.
I want to praise the good reports and encourage those
who are growing in faith and virtue in Jesus' name. Amen,
thank you for listening to today's Daily Prayer for more
inspiration and an incredible message from our feature pastor. Stay
(02:13):
tuned to pray dot COM's Sunday service.
Speaker 2 (02:23):
And I remember sitting in the car and I just
I was just crying, and I remember the Lord just said,
grief is an ongoing part of your journey throughout your
child's entire life. And seventeen years later, I see that
so clearly because recently it's him not getting a driver's license,
you know, it's him saying to me, Mom, why can't
(02:45):
I be like my older brothers and play basketball?
Speaker 3 (02:54):
Amy, Sarah Carrie, welcome, Thank you for having us. It's
so good to have you here. And I said this
a moment ago off Mike but your heroes and your
husbands as well, and just in that you don't have
what some people consider normal, right, the normal situation, so
you get a lot of curveballs, and we want to
(03:16):
talk about that today. Let's start with a quick overview
of each of your family situation. Amy, you have the
A name, so let's see you know, we're right back
in school. What's your situation for the listeners and viewers?
Speaker 4 (03:29):
Well, and Amy Brown. I live in Michigan with my
husband David. We've been married thirty eight years. We were
high school sweethearts. We have three biological kids, and then
we brought three adopted kids into our home. When we
brought them in our home, we did not realize that
they had disability because they didn't have physical disabilities, right.
(03:49):
Two of our daughters have attachment disorder and mental health
struggles feed alcohol. And then our son we adopted from
an orphanage when he was ten. He lived in Bulgaria
and we adopted him and he also has attachment and
mental health issues. But he also has a physical disability
called Arthur Gray Pos's, which kind of looks like polio
(04:10):
as small statued, very difficult time walking, can't vent his joints.
He's fairly self sufficient, so we knew that he had
that physical disability, and we knew that he would have
some issues because of being raised in an orphanage. So
that's our family six, and we're.
Speaker 3 (04:29):
Going to dive more into that story because the demands
that that has placed on the family are quite steep,
and you know, it helps people connect with what's required
when this happens. And so all right, Sarah, let's talk
about your family history.
Speaker 5 (04:43):
Yes, I'm Sarah Cleme. I live in Missouri with my husband, Craig.
We've been married for We just figured this out last night,
twenty seven.
Speaker 3 (04:51):
Years this year, congratulations.
Speaker 6 (04:55):
And we have two sons.
Speaker 5 (04:56):
Our oldest is almost twenty four and our youngest is
almost twenty. And our youngest is the one with disabilities.
His name is TJ. And he was diagnosed at his
eighth birthday. He just wasn't walking properly and we took
him in for physical therapy and somebody noticed his calves
looked very defined, and somebody just knew what to look for.
(05:17):
So it's a rare form of muscular gystrophy. It's aggressive, progressive,
and it's terminal and at the time of diagnosis. He
was given a life expectancy of average of twenty three.
So much has been done that now we see men
living into their thirties, sometimes even forties. So that was
our story. We had no clue until one day everything
(05:39):
flipped on its head.
Speaker 3 (05:40):
Yeah, all right, Carrie.
Speaker 7 (05:42):
Hi, I'm Carrie. I'm from Ohio.
Speaker 2 (05:44):
I've been married to my husband, Bruce for twenty four
years this year.
Speaker 3 (05:48):
This is not a math test, by the way, make
sure you guys know how long you've been married.
Speaker 7 (05:52):
Yeah, it's easy because we were married in two thousand.
But yeah.
Speaker 4 (05:57):
Yeah.
Speaker 2 (05:58):
We have four kids that are twenty, nineteen, seventeen, and fourteen.
Three sons and then a daughter at the end. And
our seventeen year old son, Toby, was born with Spina beeffitta.
He was actually prenatally diagnosed. I went in for my
twenty week aultarsound, and then when he was two and
a half weeks old, he went into respiratory failure and
we went back and spent over two months at the
hospital there in Columbus, Ohio. When he came home, we
(06:20):
had a medically fragile baby. He was hooked up to
a feeding pump twenty hours a day had a trake
and a ventilator. He still has this trake. He's still
on his ventilator when he sleeps. And we've also I
usually call myself the hospital stay expert because he's had
over sixty surgeries in his lifetime. Most of those were
within the first fourteen to fifteen years of his life.
And we've ridden a lot of rollercoasters and had a
(06:43):
lot of curve balls.
Speaker 3 (06:44):
Yeah, let me start the other direction now, So Carrie,
I'll start with you. When you received the diagnosis and
your world changed, How did it make you feel? How
did you respond to that? Is it a you know? Again,
for those of us that I have not had that situation,
help us better understand what that is like when the
(07:04):
doctor sits down with you and says, well, this will
be what the rest of his or her daughter's son's
life will be like.
Speaker 2 (07:12):
So well, first of all, it was devastating. My husband
said that he could tell by the doctor's face that
something was going on.
Speaker 7 (07:20):
I was a little bit oblivious to it, and actually.
Speaker 2 (07:24):
He did almost pass out, and I can tell that
story with his permission. It was kind of some leving.
It was overwhelming in the moment, but it was.
Speaker 7 (07:31):
His stomach dropped.
Speaker 2 (07:32):
It was completely overwhelming, and I remember going and sitting
in the car and just you just have a certain
expectation of what your life's going to look like. Our
kids are eighteen months apart and then twenty two months apart.
So these two little healthy baby you know, taller boys
at home.
Speaker 7 (07:47):
Life is great.
Speaker 2 (07:48):
And then all of a sudden, and I had some
experience with disability. I knew a girl was spinding benefit
in our church and had grown up with a friend
that had Down syndrome. But I remember thinking growing up,
I don't want to be a mom. I don't want
to be a special needs mom. And there's a lot
of grief that is actually I've learned ongoing through the journey.
(08:09):
It wasn't just a one. In the beginning, I thought
it was just one and done, and it's not one
and done.
Speaker 3 (08:13):
Yeah, how about you, Sarah.
Speaker 5 (08:16):
I actually worked for an orthopedist at the time, and
he was the one that put my son into physical
therapy just because he had an awkward gait. And I
took a phone call. The receptionist just happened to step away,
and it was New Year's Eve twenty eleven, and I
took a phone call and they said, we have a
concern with a patient, and I knew it was the
(08:37):
pediatric physical therapist and we only saw adults and my
son was the only one that we had referred over there,
and so kind of stick my head in the sand,
I just said, okay, well can I have the patient's name?
And he said my son's name, and I said, well,
I'm his mom, and he just wouldn't talk to me,
and I could tell in his voice. So I called
the doctor that I worked for and he said, well,
(08:58):
we actually have another that noticed two days ago because
we had him into a different doctor for some dyslexia.
And they said not to panic and not to get
on the internet. So the first thing I did was
get on the internet. But I realized I didn't know
what I was looking for. I didn't even know how
to spell it. And so we waited two months before
(09:19):
we were able to get in to see a doctor
about two hours away, and she took one look, he
got up off the floor. She had him walk a
little bit, and then she had a nurse take him
out to a play area and she said, well, you
have a Duchen boy, and here's a free camp and
we'll see you back in six months.
Speaker 6 (09:38):
Just take him home and love him.
Speaker 5 (09:40):
There was basically basically she's there's nothing you can do
but love him.
Speaker 6 (09:43):
And so wow, that.
Speaker 3 (09:45):
Sounds so in many ways right, but empty it did.
I mean, that's all I can do.
Speaker 6 (09:52):
Right right? And we had no no.
Speaker 5 (09:54):
I had looked at it because I had gone on
the internet and I noticed he was doing something called
a Gower's maneuvers, how you stand up off the floor,
and I recognized it immediately.
Speaker 3 (10:05):
It was different than other kids.
Speaker 5 (10:06):
It was different, yes, and it was very specific to
this specific diagnosis. And my husband just refused to believe it,
so he started he started arguing with the doctor.
Speaker 6 (10:17):
He's like, well, can't it be this well, can't it
be this type of muscular distrip fee?
Speaker 5 (10:20):
And I just finally put my hand on his leg
and I said, no, it's dushen.
Speaker 6 (10:23):
So we knew we needed to do something.
Speaker 5 (10:26):
Not we weren't under any illusions of or delusions of curing.
Speaker 6 (10:31):
It, but we knew we needed to.
Speaker 5 (10:33):
We we had loving them downpat we needed to do
something to give them a quality of life.
Speaker 3 (10:39):
I can't imagine that feeling of the unknown but known,
right right, it's a weird comment. Amy. How about how
about you that moment when you're you know, you adopted
your your kids, and you're going, okay, there's something going
on here. Yours is very different because it's not physical, right,
And in that context, I'm so glad that you're part
of this because it's it's a different thing, an observation
(11:02):
that trauma has caused mental disconnections for these children. So
describe that moment when you and your husband are going.
Speaker 4 (11:09):
Okay, right. I didn't have like a minute where someone
handed me a diagnosis. We adopted our first child and
we did not know any teaching or understanding about trauma.
So initially I just thought she's different because she's not
my biological kids. You know, she's acting differently. My first
(11:31):
aha moment was one that filled me with a lot
of guilt and shame because she had a seizure. She
was having some kind of X ray amri I can't remember,
and she was in the machine and when they pulled
her out of the machine, then technician said, okay, Mama,
pick her up and hold her like she likes to
be held. And I stood there like frozen, and my
(11:53):
gut just dropped like, I don't know how she likes
to be held, and I felt so much shame, like
what kind of mom does know how to hold their child?
And that it didn't occurred to me at that moment,
And I did not know in that moment that she
had fetal alcohol and attachment issues and she didn't like
to be held right And looking back, I can remember
she'd push us away, but she would go to strangers,
(12:15):
which is really common in kids with attachment issue, you know,
because we're the they're not. They don't feel safe with us,
the people that know love them the most and the
nurturing caregivers. So for us, it was just a journey
of what's going on with this kid? And with mental
health and invisible disabilities, it's a hard journey to figure
(12:36):
out what the actual diagnosis is.
Speaker 3 (12:37):
Yours is kind of unraveling as you go over the
years because it's not a physical again, a physical diagnosis.
Let me let me ask you about the issue of grief.
I think, Carrie, you you started that, you mentioned that
briefly about grief. You almost feel guilty having grief, you know, like,
(12:59):
what kind of Christian am I if I can't do this?
And you know, we again, we tasted that with our
foster experience, but we didn't have to live it every day.
That could be quite a load a the grief, which
is normal. So I guess the question is, how do
you grieve that in a way that's healthy and not
(13:20):
adding more shame to whatever shame you might have already.
Speaker 2 (13:24):
I think one of the things we've talked about and
I've learned is there's a lot of shoulds around grief.
I should not feel this way, or I should feel
this way, or my husband should using this support for me,
or he should be grieving at the same rate that
I am grieving. And I think that's one thing that
I've learned is that we can't live in the shame
of the shoulds of grief. I know I had a
(13:47):
friend tell me once, you know, because I haven't lost
a child, I don't feel like I should be grieving
because my child is still alive, but if there's still
loss there, and I think identifying and naming the loss
and what that looks like is really important and speaking
into that. I can remember my son was five years old.
We had just gotten out of a week long hospital
stay where we had taken the ambulance to the hospital,
(14:09):
and then we left the inpatient hospital stay and went
to a doctor's appointment and found out he needed surgery,
and that five days stay. My older kids, you know,
I missed out on games, I missed out on school activities.
My daughter was home and she was, you know, a toddler,
and she didn't know where mama was.
Speaker 7 (14:29):
And I remember I actually went to the library.
Speaker 2 (14:31):
To return some books that my daughter had kind of
like ruined as a toddler.
Speaker 7 (14:35):
You know how they just kind of do whatever they
want with books.
Speaker 3 (14:38):
We have no idea where you're doing.
Speaker 2 (14:40):
And I walked up to the desk and the lady
just she had no compassion whatsoever. I was going to
have to pay full price to replace these books. And
I remember sitting in the car and I just I
was just crying, and I remember the Lord just said,
grief is an ongoing part of your journey throughout your
child's entire life. And seventeen years later, I see that
(15:02):
so clearly because recently it's him not getting a driver's license,
you know, it's him saying to me, Mom, why can't
I be like my older brothers and play basketball? And
I'm also identifying that he's on his own grieving journey
because he's verbal and he can process this with me.
I think one of the things that I've learned about
grief is that it's important for us to feel those
(15:26):
feelings and when the waves of grief come, you know,
I saying, I journal and then also just to turn
it over to the Lord repeatedly. And I've found so
much comfort in scripture of David and job and being
honest with God.
Speaker 7 (15:41):
But that also takes trust with God.
Speaker 3 (15:44):
That's so true. Amy. Let me ask you about your
lilac bush comparison there, because I thought it was really
good and explain it to us.
Speaker 4 (15:53):
Well, we had moved into a new house and I
was really looking forward to the lilac bushes that were
gonna blow in the spring. I love lilacs, and I
noticed after we'd been in the house a few months
that the lilac wishes looked dead, and I got kind
of crazy about it. I looked at all my neighbor's
lilac bushes and I was like, can I get fertilizer?
Speaker 6 (16:14):
Yeah?
Speaker 4 (16:15):
Can I put fertilizer? I actually told my husband can
we rip them up and buy newes? I was so
focused on wanting this beautiful flower. And I tell that
story in the book because with grief, like I was
so focused on what wasn't there, that's all I could
think about. How can I make what's not here be here?
And I think it's really common in all special needs families,
but with kids with behavioral issues and kids that don't
(16:37):
attach to you, there's not a loving bond there and
that's very painful to walk through. And so a lot
of times, just like my Lilacs, I just didn't want
to wait. By the way, they didn't eventually bloom, they
were just late bloomers. I wanted to take all my
focus and energy to make it make them bloom. And
I think grief can sometimes look like that. It can
(16:57):
look like trying really hard. It doesn't always look like crying.
It looks like anger trying really hard. And so I've
had to learn I am not going to have the
relationship with my kids with attachment disorder that I wanted,
But I can see what is there. I think when
we continue to look at I wish it was this.
I wish we could just get here. And I do
(17:18):
think with behavioral issues, because it's kind of a silent
suffering you're doing because the behavior is hard. People don't
understand what's going on. They think your parenting's terrible. That
you kind of isolate yourself and say, if I just
try harder, if I just find the right combinations, this
is going to be better. And I had to learn
to say, these are the small moments of grace and
(17:41):
beauty that God has put in my life every day.
They may not look like I thought they were going
to look, but that this helps me. It's like small
SIPs of grace every day instead of looking at this
big destination. I just had to learn that to be
a attentive to those moments. Yeah, of what we have.
Speaker 3 (18:02):
You know, as you're describing it for us, it sounds
like an amplification of what we all experience. But you
guys have this magnifying glass on it that makes it
bigger and right in your face. Whereas we're all learning
these lessons, some of us without as much acuity as
you're seeing it, because again, it's so right there for you,
(18:26):
and you have to deal with it, whether it's grief
or loss of a dream or the things you're talking about.
That's what I'm hearing from your hearts. And I don't
know that we that don't have this situation are as
aware of our own shortcomings and issues as you will be,
because it's just right there is that fair? Have you
noticed that as moms do? Do you feel like some
(18:48):
of the moms that don't have special needs children like
they're kind of back in at square one with some things?
It does require you to be in tune with things
that many of us would not be in tune with.
Does that resonate with you?
Speaker 5 (19:02):
Yeah, I think it's like a crash course. It's almost
you know where you're it seems like you're flying through life.
And I have joked around that my life sometimes seems
like that whack a mole game that you know, you
go and it's like like, Okay, I got it, I'm
gonna pop my head back up and nope, life says, no,
you don't. And but that's just it is. It's amplified.
(19:25):
And I think that's a really great word.
Speaker 6 (19:28):
It's not.
Speaker 5 (19:30):
Ours isn't worse or better than anybody's. It's just we
are in this twenty four seven and some of us
it's even in the middle of the night, it's alarms
going off or things happening or you know, just surgeries
and here we go again.
Speaker 6 (19:45):
And so yeah, it's.
Speaker 3 (19:47):
Well, and it gets down to some basic things about
us as human beings. I mean at the core. I mean, John,
how many programs does this theme come up? Our selfishness?
I mean you look at the context of marriage, whoa.
I mean, our selfishness rises, and then parenting our selfishness rises.
You guys, you get it beat out of you. I mean,
(20:07):
there's selfish I'm not selfish. I'm just trying to survive.
And it's just there day after day. But the irony
of it, the good thing of it is you learn it.
I mean, what God is trying to teach all of
us and becoming more selfless you have to, right, And
(20:27):
it's an odd thing to think of that as a blessing. Really, yeah,
do you feel like, Okay, in the big scheme of
my spiritual development, this is a great blessing.
Speaker 7 (20:41):
I think.
Speaker 3 (20:41):
So.
Speaker 2 (20:42):
It's taken me a long time to get there, and
there's certainly days I don't feel that way.
Speaker 7 (20:46):
You know, Oh, of course it's but I think.
Speaker 2 (20:49):
If I'm completely honest, I know I have said this before,
I don't think if we would have had Toby, I would.
Speaker 7 (20:57):
Have relied on God the way that I've learned.
Speaker 2 (21:00):
Too, because as Amy said, I was grasping for control.
As soon as I kind of got over the sorrow
of his diagnosis, all of a sudden, it was like, Okay,
here you go. You have this doctor's appointment, this tour
of the Niku, this surgeon to meet with, and I
just started controlling everything. And so if the Lord hadn't
(21:20):
allowed this in my life, it would be a really
different person. It might have been another trial that he
allowed to happen.
Speaker 3 (21:28):
But it's like the Lord to turn everything upside down.
Those of us that don't struggle with the things you're
struggling with, you know, wow, aren't we happy? But we're
not learning the lessons that we should learn. And then
in God's economy, you're so far out in front of
some people, maybe most people. You know, we're right here
(21:49):
on earth. Everything our existence is about here. And now
it's hard for us to think of heaven and eternity
and no more tears, no more sorrow. How does the
idea of thinking to the future for your children, where
they are healed, they are complete there with the Lord,
they are forever going to be okay, do you think
(22:13):
about that?
Speaker 5 (22:14):
I think in our situation, because we have that terminal
word that is always over our head that I know,
short of something catastrophic, I will bury my child. And
so it took me a long time to realize. It
was almost like God was like, but he's not yours,
he's alone, he's mine, and he's exactly the way I
(22:36):
want him, and I will get him back and have
him exactly the way I want him. So that took
a lot of time to figure that out. But I
know I look to heaven and I think kind of
almost what you said, your children are. I can't wait
to see how.
Speaker 4 (22:53):
He is.
Speaker 5 (22:53):
But I just think his heart is exactly the way
his heart needs to be.
Speaker 6 (22:58):
Right now.
Speaker 5 (22:58):
We don't have the behavior issues. In fact, I have
the opposite. It's always I love you, I love you,
I love you all day long. So it's it's different.
But you know, when you have that terminal diagnosis, heaven
is definitely something to look forward to and right and
I think that we did in a way, but it
really shines a light on it. It makes you put
(23:20):
there's something behind the words that you speak.
Speaker 6 (23:23):
As a Christian.
Speaker 5 (23:24):
I think I didn't realize how maybe not superficial, but
how much I didn't truly believe that heaven was something
to look forward to until I knew it's right on
the horizon for my child.
Speaker 3 (23:35):
Yeah, yeah, that's so good, jump in.
Speaker 4 (23:38):
Yeah.
Speaker 2 (23:39):
I think for me, I just think often of that
verse that talks about our light in momentary afflictions, and
it doesn't feel light or momentary at times. My husband
said one time, I can't wait to throw football at
Tobe in heaven and see him run. And the way
that hope encourages me is I know that whatever we're
going through a daily basis, it is just temporary. It
(24:01):
is short in light of what God has for us
in eternity, and that makes it worth it.
Speaker 3 (24:07):
Yeah, and again that hope becomes so tangible for you,
whereas others it still may be murky or foggy, as
you said, Sarah, for those of us that aren't in
that position to hope for heaven. I mean, it sounds
odd we talk about that brutal truth where things aren't
flowing well and maybe you shake your fist at the Lord,
(24:29):
or really, how did you manage those moments of doubt
and stress and anxiety and Lord, seriously, why me kind
of thoughts. Let's kick it off with you, Sarah.
Speaker 5 (24:42):
I likened right after diagnosis to a fog. Once that
fog started to lift, there was a lot of anger
for me and a lot of doubt. I never doubted
that there was a God. I never doubted the magnitude
or the magnificence of him. I doubted the loving of him.
How could a loving God, you know, watch my son
(25:04):
go through this? And it was really difficult to go through.
And I realized I had a conversation with God in
the closet, and it was because the closet was the
safest place nobody could hear me.
Speaker 6 (25:17):
And I was just like, how could you do this?
Speaker 5 (25:20):
I can't watch my son die? And it was just
like he said. He was like, I know how it
feels like it's difficult, and that gets me every time.
But I was so angry for so long, and it
was almost like he said, I know your doubts. Why
are you trying to sugarcoat this. I still went to church,
we still sang, we still taught Sunday school. We were
(25:41):
the quote unquote perfect little Christians on the face of it.
But I did not I was so angry. I didn't
want to. I would leave during during worship songs. I
deprogrammed the Christian stations off my radio from my car.
I was just like, I can't this all. I felt
like such a hypocrite, and so so I decided, if
(26:02):
I truly don't believe in the kind of God that
I need to believe in, then I'm going to prove
it wrong. I'm a statistician by trade, and I kind
of pulled out my nerd hat and I'm like, I'm
diving in. And the more I dove in, the more
he was giving me answers right. And he wasn't angry
that I was angry. He was like, Okay, finally you're
(26:23):
bringing this to me. I've known you're angry all along.
I've known you're doubting all along. So let's get into it.
And so we did, and it was everything I've said
it before that my doubt really fortified my faith. And
so now even though I will have doubts, it doesn't
mean that I don't have them. I still will say, Okay,
why God, why is he doing this? My son just
(26:44):
stopped walking, and I'm like why. I've learned to still
It's not that I'm asking a wrong question. It's not
that I'm asking why is wrong. It's now I'm like, okay,
why why why are.
Speaker 6 (26:59):
You doing this?
Speaker 5 (27:00):
And what are we supposed to gain from this? What
do you want us to put forward from this? It's
just switched a little bit. It's not like, why are
you doing this to us? It's okay, why are you
letting us?
Speaker 3 (27:10):
Well? I really appreciate that. And you know, kind of
the imagery I'm getting is you're digging with a shovel
and you're finding a gold nugget. But let me press
on a little bit, just to being able to make
that transference from doubt to I guess what I would
describe is belief, but with you know, with regret? Is
(27:32):
that a good way to express it? And is that
a different stage of belief? You know? Now? It's not
maybe God isn't there because I'm not in a better place,
But he's there, and what does he want to do
with this? With me? Right?
Speaker 8 (27:45):
Right?
Speaker 5 (27:46):
I can see I think with time you can look
back and see how he had.
Speaker 6 (27:51):
His hand and everything right.
Speaker 5 (27:52):
And when you are on your knees in a closet,
angry and crying, and doubting you're not. It's almost like
you're not lifting yourself up to open up to God.
I was so busy trying to keep him out and
trying to be angry at him. I wasn't letting anything
else in.
Speaker 3 (28:08):
And so that's so good. And again it's a process,
right Carrie, coming back to you where Sarah was bold
enough and open enough and honest enough that that tension
between God or you're real? And if you're real, why
isn't my life better?
Speaker 2 (28:24):
You know? The week of my son's diagnosis, my husband
turns to me and says, well, if not us, then
who to raise a child like this? Like we have faith,
we have good support, we have a great church. But
somehow I thought that because I had been faithful, that
it negated any future suffering in my life.
Speaker 7 (28:42):
And boy did it hit me hard.
Speaker 2 (28:44):
And I began to doubt that God loved me. And
you know, when your prayers don't get answered, when God
clearly says no.
Speaker 7 (28:53):
You just you wrestle.
Speaker 2 (28:54):
I think about take up wrestling with the angel and
just you know, and Sarah wrestling in her closet, and
I think one of the things that I've come to
realize is God's love is so multifaceted and how he
shows it and I just have to have that open
posture that Amy talks about and find it in different ways.
And I experienced it just differently. It just wasn't what
(29:16):
I thought it was going.
Speaker 6 (29:17):
To look like.
Speaker 3 (29:18):
Yeah, that idea that in our limitations of emotions and
our way to process things, there it does feel like
it's punishment. What have I done more to deserve this?
And I think he's saying, that's not the equation. You know,
this is going to be something you're all going to
be learning from and it'll deepen your relationship with me
(29:39):
if you let it. And that's really that point Amy,
the shaking of the fist at God. You guys are
so brave to say this, but I don't ask that
of a lot of guests. Tell me your like weakest
moment with the Lord.
Speaker 4 (29:53):
Well, when you adopt, it's not a surprise, right, Like
you don't get a surprise adoption. So one of the
struggles I had was, Lord, we prayed so hard about
this each time we made this decision and felt like
you let us here, and now it's just so hard.
I remember a lady saying to me, and I tell
the story in the book. She comes up to me
and says, I just can't wait to see what God's
(30:14):
going to do in your family. And I slept on
a good Christian girl smile. He went yeah. And then
I went home and I laid on my bed and
I bowled my eyes out, and I said to God,
what have you done? I mean, that same day my
daughter had been expelled again from school. I mean, I'm
kind of not stressed by that anymore. It's kind of
a norm for us. And I just thought, what have
(30:37):
you done? Amiss, Like I've done this God, and what
have you done? And one of the things that I
felt like God continues to show me is Amy, you're
so focused on the destination. If we can just get
ourselves a little bit together, you're forgetting your companion, which
is Christ, who walks through us in all of this.
And you know, there's a story in the Bible about
(30:58):
Abraham and Sarah and they have Hagar, the maid servant.
Sarah's not being very kinder, and she goes out in
the desert and God sends her back to the hard situation.
But she says, you are a gud who sees me
and I've come to realize that being seen makes all
the difference regardless of what we're going through.
Speaker 3 (31:18):
Well, and in your situation adopting children, that's where you know,
if you don't get a handle on that your emotions
can you can lose it. And that's the worst possible
thing with the kids, right, because they're pressuring you to
test you. Do you love me? Even if I do this?
Even if I get expelled from school? We still love me?
I don't think so, because I'm unlovable. That's really what
(31:40):
they're saying. And so the long arc for you is
if you and your husband continue to demonstrate love to them,
that's probably the biggest victory you will have. Right.
Speaker 4 (31:49):
And it looks different, and it looks different, it looks
completely different than another child.
Speaker 3 (31:54):
Yeah, let me let me turn a corner here, another
intimate question. I'm sorry, but this is what people are
going to be saying about in your own marriages. The
pressure that this creates, having a you know, physically handicapped
or mentally handicapped child. The divorce rates are quite high.
(32:14):
And so if again I can ask you to be
vulnerable there, how do you safeguard your marriage? How do
you protect your marriage. How do you I guess in
some ways prioritize appropriately when these children need so much
of you.
Speaker 2 (32:27):
I think part of it, too, has been just allowing
the Lord to have each of us on our own journeys.
It's not expecting my husband to be on the same
grief journey that I've been on. And just recently he
was processing some grief and I was actually a little
frustrated with him, like, how do you not know this
(32:49):
part of Toby's story from those early days he's preparing
Bruce was preparing for a testimony for his men's group
at church. He kept calling me back into the office,
and I thought, why how do you not know this?
Speaker 3 (33:02):
And it's interesting doing to you.
Speaker 7 (33:04):
Yeah, I was.
Speaker 2 (33:05):
Just reacting, you know, And then I was I went
back in the kitchen, I was washing dishes, and I
just felt like the Lord said, he's on his own
grief journey. You have to let him process this in
his own way. And then I think it's just you
have priorities in different seasons. There were you know, the
season of the hospital stay when we were in for
(33:27):
sixty four days, that we were ships passing in the night.
But we also found the help that we could have.
We had people sitting with Toby' so occasionally we could
just grab like two seconds in the cuffeteria together and
just understanding what your limitations are, but also making that.
Speaker 7 (33:43):
Still a priority.
Speaker 3 (33:44):
You know, I would think and correct me if I'm wrong.
You know, where you and your husbands are connected, you're
carrying so much stress and such a load that it
becomes pretty easy to go at each other because where
else do you go.
Speaker 5 (34:00):
Sometimes there's a I did not handle that so well,
So let's backtrack and go at this a different way.
Speaker 6 (34:07):
Yeah, there's some apologizing.
Speaker 2 (34:09):
And I think it's it's understanding that, like, we're in
this together, and we're certainly better together, and we would
be a part and so it and there have been
times that we've gotten arguments over the most ridiculous things,
and I think it's asking that deeper question, Okay, why,
like what is it?
Speaker 7 (34:29):
What's the real thing that's going on here? Yeah? Is
it grief? Is it frustration? Is it anger?
Speaker 2 (34:34):
And then we have actually done that where we've said, okay,
let's back up five minutes and start let's start over,
let's just restart this conversation.
Speaker 3 (34:41):
Yeah, Sarah, I understand you have a observation. I guess
I would call it about not overlooking those joyful moments
that come. And again, you could be so buried in
life that you don't and you know all of us
have that potential to not see God. Moments are joyful moments.
(35:02):
But you're on the beach, I think in this story,
and something joyful happened, what was it? What did it
teach you?
Speaker 5 (35:07):
More importantly, So, we were walking on the beach and
it was the first time our youngest son with disabilities
had seen the ocean, and I love the ocean, and
so his just eyes lit up and it was just
you could just tell something miraculous was in front of him.
But he was struggling to walk through the sand and
he was eight at the time, and my oldest son
(35:28):
was twelve. My oldest son is just very athletic, and
he just bounded into the ocean, and my youngest son,
who's eight, was almost like a one year old where
we had to stand and hold him because even a
light wave would throw him down. And eventually he got
bored because there's only so long you want mom to
hold you in a foot of water, and so he
(35:50):
wanted to go back to the room, and my oldest
son came back and he said, oh, watch this, And
so they laid in the surf and let the waves
take them. And it was my son had said, you
just let the waves take you back and forth. They'll
do all the work.
Speaker 6 (36:06):
That's what he said.
Speaker 5 (36:07):
And it was just like God was just saying, see,
if you just let me do the if you just
relax and let me do it, I'll take you to
and from everything.
Speaker 6 (36:17):
And the joy of that.
Speaker 5 (36:19):
It's one of my favorite pictures of my boys, and
I can just see the joy in it. And my
oldest son taught us such a valuable lesson that My
husband and I were focused on the awkward gate, the
struggling through the sand.
Speaker 6 (36:31):
Is he going to be? Is he going to have
fun enough?
Speaker 5 (36:34):
And we just needed to stop and take in the
majesty around us, the waves, the boys laughing, and I
could have missed that.
Speaker 3 (36:43):
Yeah, that's so true, and I love that. That's one
of the most pleasurable experiences I have is hearing my
boys laugh together. It just, you know, in another room,
if they're messing around or whatever they're doing and they're
just happy. It just warms my heart, and that's got
to be true certainly.
Speaker 6 (37:00):
Yeah, It's almost like God was just saying, just.
Speaker 5 (37:01):
Lift your face, just lift it up for a second,
look around you, and I just realized I needed a
focus on the joy.
Speaker 3 (37:09):
How about that thought of our father in heaven, Heaven
sent that same sense of joy that when he sees
his children laughing. I think Amy turning that corner a
little bit for you, because again, you're dealing with more
mental stresses with the kids, not so much physical inability
or disability. That's got to be somewhat of a struggle.
(37:33):
And I think even in the book you referenced how
attachment disorder the children can learn to play espouses off
one another. Just again for a peek into that, because
it's so brutally honest. Describe that experience where the kids
are setting you up against your husband. And it's interesting
(37:56):
in a survival mentality that they learned to do this
at a very young age, that they could learn this
at six, seven, eight years old.
Speaker 4 (38:04):
Right, It's really common in kids with attachment disorder to
target the nurturing caregiver, which is typically the mom. So
an example in our home could be I could have
a raging child wanting to physically harm me, and then
Dad walks in the door and they turn on a dime.
Hi Dad, and it's like night and day. So my
(38:25):
husband has never fully seen all the behavior I've seen,
and I'm very grateful that he believes me. I've had
mom say that they had to put a camera up
and then their husband would watch the camera and go
on to get the full story, get.
Speaker 7 (38:40):
The full story, probably unbelievable, unbelievable.
Speaker 4 (38:43):
I think the struggle Dave and I have always been
a great team, and we have six and we have
to be a team. But one of my personal struggles
was I'm kind of the punching bag in some ways
and he's not. And I'm kind of jealous sometimes that
he doesn't right and he carries things than I do.
You know, he hears all that I have to tell
him about what we're walking through. So I had to
(39:05):
kind of come to terms with, Okay, we're on a
team together, and yeah, I'm getting the brunt of some
of this abuse that he's still believing me at least.
You know, some parents, some people don't have that. I
think that's where you get a lot of marital discord
when the husband's and divorced. The husband's like, I don't
know what you're talking about. This kid's a the light
right now.
Speaker 3 (39:24):
You're the problem.
Speaker 4 (39:25):
Yeah, you're the problem. And honestly, if I can say,
even from marriage, that's spoken over us moms with kids
like this a lot from church and friends and mother
in law's like you're the problem. This kid is And
that's really hard. That's really hard, and it makes you
feel shame, shameful and isolated. So I think the thing
(39:46):
that helped me a lot was knowing Dave's on my
team and being honest but being okay that he didn't
have to experience all of that. And you know, and
we've been to therapy and we do things together and
we have a very strict role that when we go
out together, he takes the phone call from the babysitter
of all the bad things that happen, and it's like,
is it what happens at home? Don't tell any.
Speaker 6 (40:07):
Because it is.
Speaker 4 (40:07):
I am immediately stressed again. So we kind of have
some things that we've that he's walls be built around
me that he takes the brunt of some of that
because he can hear all the bad things and go, Okay,
I'm like up all night worrying about all the bad things.
Speaker 3 (40:21):
Well, and I so appreciate it. Amy. I have friends
that have adopted from countries where attachment disorder is typical
because these kids never get touched. They're in cribs until
they're three four years old or older and they literally
don't get touched. And you know, it's such a sad
human experience and it impacts them dramatically, and boy, just
(40:44):
tears at my heart. And then many of those friends
have had to institutionalize those kids. That's a very common way. So, Man,
my admiration for you and your husband sky I to
stick with it and be there with them. Let's end here,
what can the church generally and Christians generally, what can
(41:05):
they do that's helpful? And then maybe mention things that
aren't so helpful, like little phrases we like to say,
and you know, I think you have some examples of that,
but let's just you know, again, let's just open that
up and you guys have at it. Both the positive
things that we could do churches. What could churches do
to help accommodate special needs children in all facets mental, physical?
(41:30):
And then what are those things that we say that
could really just take the legs out from under you.
Speaker 2 (41:36):
I think the biggest thing is listening to the families.
And also I think it's so important to educate your
entire staff, not just the buddies who are helping the kids.
Speaker 7 (41:49):
Because you do have families that.
Speaker 2 (41:50):
Come in and maybe you know their disabilities are hidden
or you know, I've come across parents that they've said, yes,
my child has you know, level and autism, but I
just didn't tell the workers at church because I just
wanted to see how they would handle it. And I
think it's important for there to be education across the
(42:12):
board on all levels because you know, I have a
nineteen year old son who's teaching first grade boys and
he needs to know how to you know, he obviously
has some level of understanding with his brother, but he
needs to know those things. And I think the one
thing that's not helpful is God won't give you more
than you can handle that versus taken out of context,
that you.
Speaker 3 (42:32):
Get that God won't give you more than you can
I can imagine that will come handle it for me
then right, yeah, yes, yeah, I mean it's sent with
the right intention, But man, does it throw salt in
the wound?
Speaker 2 (42:46):
Right, It's like, I don't. I couldn't handle this without
the Lord. So yeah.
Speaker 5 (42:53):
We have an elder at our church when we first
received the diagnosis. My husband's a deacon in our church,
and they asked us to come in and tell us
about nobody knew the disease. It's rare, and they said,
what can we pray over? And the first thing out
of my husband's mouth was our marriage because over eighty
five percent of marriage is in a divorce with duche
not and that's what we read at the time. How
(43:13):
true it was, whatever, but it scared us enough that
we're like, just pray over our marriage. And I have
one elder that will come up to me and he
puts his hand on my shoulder and he said.
Speaker 6 (43:21):
How are you doing. I'm like, oh, I'm good, fine,
you know, it's just fine. And he's like, how are
you doing?
Speaker 3 (43:29):
Right? He wants the truth and.
Speaker 5 (43:30):
He wants the truth and that's just it, and he's
present and he doesn't want the fine. He wants to
know and he will say, how can I pray for
you this week? And it is a week to week thing. Yeah,
And I think that that is I know someone is
there and I can say, Okay, well we have this
doctor's appointment coming up or whatever that might be for
(43:51):
the week, and I know he's praying over it. And
that's just knowing that there's people in our corner. And
it's not superficial, not that everybody's not that people are
being so official, but he wants, he wants the nitty gritty.
Speaker 3 (44:03):
Yeah, and that makes you feel seen. It does again, Yeah,
that he cares. Yeah.
Speaker 6 (44:07):
Like Amy said, it's just being seen.
Speaker 3 (44:09):
Right.
Speaker 4 (44:10):
We could have a small group of people that we
could go, look, can you pick up the prescription? Can
you come sit at the park with my child? So
I can drive in my car and cry for an
hour because I really don't want to do this anymore.
Just a small group of people that hear our stories
and look past the behavior. And I think that is
really important. A lot of the moms that have the
kids kind of kids I do, they've.
Speaker 6 (44:30):
Walked out of church.
Speaker 3 (44:31):
Yeah, I think of that. That's really saying maybe a
portion of that group walk away from the Lord.
Speaker 4 (44:36):
Right.
Speaker 5 (44:37):
Our church does a buddy program and so we started
to disability ministry and we have people we assign two
volunteers to each child. So these children know they're two
volunteers and they switch and we were like, okay.
Speaker 6 (44:49):
So this is the this is what makes them awesome.
Speaker 5 (44:52):
And here with my son, like when he's grinding his
teeth or he starts to click, you might want to
dig in or take him to the sensory room or
something like that. We tell them what to look for,
and when we pick them up, don't immediately say, well,
they hit so and so.
Speaker 6 (45:09):
With the cranky or they weren't listening.
Speaker 3 (45:11):
You know, it's give me the checklist.
Speaker 6 (45:13):
Yeah, it's just saying I enjoyed your child.
Speaker 3 (45:16):
Yeah. Wow, the power of that.
Speaker 6 (45:18):
Yeah.
Speaker 5 (45:19):
And then my husband, I have forty five minutes to
actually focus on the word and to worship.
Speaker 3 (45:24):
Well, you guys are saying so many strong things and
so many right things, and you know, in many ways
with our foster outreach, you know, one of the things
that we encourage Christian couples to do is look for
opportunities to do respite. And it's a big word. We
didn't understand what respite meant before we got into foster care.
It means like giving relief to a foster family so
they can have some margin. You know, it might be
(45:46):
shopping for them, doing their laundry, just something. And I
think the data as we've looked at it, if there's
five respite care families that come around and adoptive or
a foster family, they typically will be six usful in
that endeavor if they have that much help. But think
of that, that's a lot saying we need five families
to help us raise this child or these children. Right Well, listen,
(46:11):
you guys have done a stellar job, and our hearts
do go out to you, not in a way to
show you disrespectful sympathy, but man, God chose you for
a special assignment. Gives me tears thinking about it. Thank
you and your husbands for doing it and for doing
it well, and for teaching the sighted of us to
do it better and to know God deeper. So thank
(46:33):
you for being.
Speaker 6 (46:34):
Here, thanks for having for having us.
Speaker 3 (46:35):
Let me turn to the listeners and the viewers. Man,
what a great resource to the other side of special
navigating the messy, emotional, joy filled life of a special
needs mom. And you've heard their hearts and you know
what they're saying. So if this is something that would
help you get a hold of us if you can
make a gift of any amount, we'll send it to
you as our way saying thank you. If you can't
afford to do that, we'll send it to you anyway,
(46:57):
and trust others we'll cover the cost of that. Might
be a friend, there's somebody in your church. Maybe a
church should hold a few of these copies so they
can give them to families who come in that have
special needs kids. That would be a blessing. And there's
many ways you can use this, So get in touch
with us. As John mentioned, you know we've been doing
this for over forty almost forty five years now, right,
(47:20):
you're not going to surprise us. If you need help
to talk with a counselor et cetera. Just get a
hold of us.
Speaker 8 (47:26):
Our number is eight hundred, the letter A and the
word family eight hundred two three two six four five
nine wor stoped by the program description for all the
details and on behalf of Jim Daily and the entire team.
Thanks for joining us today for focus on the Family
with Jim Daily. I'm John Fuller inviting you back next
time as we once again help you and your family
(47:47):
thrive in Christ.
Speaker 4 (47:54):
You will be like.
Speaker 3 (47:56):
God, God and through it all, God's promise remain true.
Speaker 1 (48:05):
Follow me Apro and I make you great.
Speaker 6 (48:10):
This is the Chosen People. Listen to the Chosen People
at the Chosen.
Speaker 5 (48:19):
People dot com.
Speaker 3 (48:20):
That's the Chosen people dot com.
Host
Matthew Potter
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