August 27, 2025 • 45 mins
See omnystudio.com/listener for privacy information.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
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
(00:22):
I be like my older brothers in play basketball?
Speaker 2 (00:32):
Amy, Sarah Carrie, welcome, Thank you for having much. It's
so good to have you here. And I said this
a moment ago off Mike, but you're heroes and your
husband's 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
(00:54):
talk about that today. Let's start with a quick overview
of each of your family situations. Amy, you have a name,
so let's see. You know, we're right back in school.
What's your situation for the listeners and viewers?
Speaker 3 (01:06):
Well, and Ami 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. Two
(01:27):
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 grayposis, which kind of looks like polio. We's small statued,
(01:49):
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.
Speaker 4 (02:04):
So that's our family.
Speaker 2 (02:05):
Six, and we're 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 (02:20):
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 years this year.
Speaker 2 (02:30):
Congratulations.
Speaker 4 (02:32):
And we have two sons.
Speaker 5 (02:33):
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.
(02:54):
So it's a rare form of muscular gystrophy. It's aggressive, progressive,
and it's terminal. And at the time of diegnosis, he
was given a life expectancy of average of twenty three.
Speaker 4 (03:05):
So much has been.
Speaker 5 (03:06):
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 flipped on its head.
Speaker 2 (03:17):
Yeah all right, Carrie.
Speaker 6 (03:19):
Hi, I'm Carrie. I'm from Ohio.
Speaker 1 (03:21):
I've been married to my husband, Bruce for twenty four
years this year.
Speaker 2 (03:25):
This is not a math test, by the way. Yeah,
make sure you guys know how long you've been married.
Speaker 6 (03:29):
Yeah, it's easy because we were married in two thousand.
But yeah, easy about plan.
Speaker 1 (03:34):
Yeah, 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 beefida.
Speaker 6 (03:45):
He was actually prenatally diagnosed.
Speaker 1 (03:47):
I went in for my twenty week altarsound, 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 had a medically fragile baby.
He was hooked up to a feeding pump twenty hours
a day, had a trake and a ventilator.
Speaker 6 (04:03):
He still has this trait. He's still on his ventilator
when he sleeps.
Speaker 1 (04:06):
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 written a lot of
rollercoasters and had a lot of curve balls.
Speaker 2 (04:21):
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. You know, again,
for those of us that have not had that situation,
help us better understand what that is like. When the
(04:41):
doctor sits down with you and says, well, this will
be what the rest of his or her daughter son's
life will be like.
Speaker 1 (04:49):
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. I was a little bit oblivious
to it. And actually he did almost pass out, and
I can tell that story with his permission.
Speaker 6 (05:05):
It was kind of some leave. It was overwhelmed in
the moment, but it was.
Speaker 1 (05:08):
His stomach dropped. 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 6 (05:24):
Life was great. And then all of a sudden, and I.
Speaker 1 (05:27):
Had some experience with disability. I knew a girl was
spinding benefit in our church and had grown up with.
Speaker 6 (05:33):
A friend that had down syndrome.
Speaker 1 (05:35):
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. 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 2 (05:50):
Yeah, how about you, Sarah.
Speaker 5 (05:53):
I actually worked for an orthopedist at the time, and
he was the one that put my son into physical therapy.
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.
(06:13):
And I knew it was the 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.
Speaker 4 (06:29):
I could tell in his voice.
Speaker 5 (06:31):
So I called the doctor that I worked for and
he said, wow, we actually have another doctor 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
(06:52):
didn't even know how to spell it. And so we
waited two months before we were able to get in
to see a doctor about two hours agay, and she
took one look.
Speaker 4 (07:02):
He got up off the floor.
Speaker 5 (07:04):
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 duchene boy, and
here's a free camp and we'll see you back in
six months.
Speaker 4 (07:15):
Just take him home and love him.
Speaker 5 (07:17):
There was basically basically, there's nothing you can do but
love him.
Speaker 2 (07:20):
And so wow, that sounds so in many ways right,
but empty it did. I mean, that's all I can do, right.
Speaker 5 (07:29):
Right, And we had no no. 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 2 (07:42):
It was different than other kids.
Speaker 5 (07:43):
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 4 (07:54):
He's like, well, can't it.
Speaker 5 (07:54):
Be this, well, can't it be this type of muscular
district fee And I just finally put my hand on
his leg and I said, no, it's dushe. So we
knew we needed to do something. Not we weren't under
any illusions of our delusions of curing it, but we
knew we needed to. We we had loving them down
pat we needed to do something to give them a
(08:15):
quality of life.
Speaker 2 (08:16):
I can't imagine that feeling of the unknown but known
right right. It's a weird comment, Amy 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. Uh An observation
(08:39):
that trauma has caused mental disconnections for these children. So
describe that moment when you and your husband are going okay, right.
Speaker 3 (08:47):
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 AHA moment was
(09:09):
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 gut just dropped,
(09:31):
like I don't know how she likes to be held,
And I felt so much shame, like what kind of
mom doesn't know how to hold her child? And that
it didn't occurre 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, which is
(09:53):
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 no love them the most, and 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 out what
(10:13):
the actual diagnosis is.
Speaker 2 (10:14):
Yours is kind of unraveling as you go over the
years because it's not a physical again, a physical diagnosis.
Let me ask you about the issue of grief. I
think Carrie, you started that. You mentioned it briefly about grief.
You almost feel guilty having grief, you know, like, what
(10:37):
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
(10:57):
adding more shame to whatever shame you might have already.
Speaker 1 (11:01):
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
(11:21):
of the shoulds of grief. I know, I had a
friend Tommy 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
(11:41):
had just gotten out of a week long hospital stay
where we had taken the ambulance to the hospital 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 activity.
My daughter was home and she was, you know, a toddler,
(12:04):
and she didn't know where mama was. And I remember
I actually went to the library to return some books
that my daughter had kind of like ruined as a toddler.
You know how they just kind of do whatever they
want with books.
Speaker 2 (12:15):
We have no idea what you're talking about.
Speaker 1 (12:17):
And I walked up to the desk and the lady
just she had no compassion whatsoever.
Speaker 6 (12:22):
I was going to have to pay full price to
replace these books.
Speaker 1 (12:24):
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
(12:47):
I be like my older brothers and play basketball? And
I'm also identifying that he's on his own graving 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
feelings and when the waves of grief come, you know,
I saying, I journal and then also just to turn
(13:09):
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 6 (13:18):
But that also takes trust with God.
Speaker 2 (13:21):
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 3 (13:30):
Well, we had moved into a new house and I
was really looking forward to the lilac bushes that were
gonna bloom 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 4 (13:51):
Yeah?
Speaker 3 (13:52):
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 this
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
(14:14):
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
(14:35):
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
(14:55):
think with behavioral issues, because it's kind of a silent
suffering you're doing, because it has their behaviors 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
(15:18):
and beauty that God has put in my life every day.
They may not look like I thought they were going
to look that 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
attentive to those moments of what we have.
Speaker 2 (15:39):
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 saying it, because again, it's so right there for you,
(16:03):
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 you? Do you feel like
(16:25):
some of the moms that don't have special needs children
like they're kind of back and 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 4 (16:39):
Yeah, I think it's like a crash course.
Speaker 5 (16:41):
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 know, and it's like like, Okay, I
think 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. And I think that's
(17:03):
a really great word.
Speaker 4 (17:05):
It's not.
Speaker 5 (17:07):
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 4 (17:22):
And so yeah, it's.
Speaker 2 (17:24):
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,
(17:44):
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
(18:04):
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, I think.
Speaker 1 (18:19):
So It's taken me a long time to get there,
and there's certainly days I don't feel that way.
Speaker 4 (18:23):
You know, Oh, of course it's.
Speaker 1 (18:26):
But I think if I'm completely honest, I know I
have said this before. I don't think if we would
have had Toby, I would have relied on God the
way that I've learned to, 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
(18:46):
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 allowed this in my life,
it would be a really different person. It might have
been another trial they allowed to happen.
Speaker 2 (19:05):
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
(19:26):
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, they're with the Lord,
they are forever going to be Okay, do you think
(19:50):
about that?
Speaker 5 (19:51):
I think in our situation, because we have that terminal
word that is always over our heads, that I know,
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 want him,
(20:14):
and I will get him back and have him exactly
the way I want him.
Speaker 4 (20:17):
So that took a lot of time to figure that out.
But I you know, I look to heaven.
Speaker 5 (20:21):
And I think kind of almost what you said, your
children are. I can't wait to see how he.
Speaker 2 (20:30):
Is.
Speaker 5 (20:31):
But I just think his heart is exactly the way
his heart needs to be right now. We don't have
the behavioral 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 yeah, when
you have that terminal diagnosis, heaven is definitely something to
look forward to and right, and I think that we
(20:52):
did in a way, but it really shines a light
on it. It makes you put there's something behind the
words that you speak as a Christian. 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 2 (21:12):
Yeah, yeah, that's so good, jumped in.
Speaker 3 (21:16):
Yeah.
Speaker 1 (21:16):
I think for me, I just think often of that
verse that talks about our light and momentary afflictions, and
it doesn't feel light or momentary at times. My husband
said one time, I can't wait to throw football with
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
(21:38):
is short and light of what God has for us
in eternity, and that makes it worth it.
Speaker 2 (21:44):
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'd talk about that brutal truth where things aren't
flowing well, and maybe you shake your fist at the
(22:05):
Lord 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 (22:19):
I likened right after diagnosis to a fog.
Speaker 4 (22:23):
Once that fog started to.
Speaker 5 (22:25):
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 side of him. How
could a loving God watch my son go through this?
And it was really difficult to go through. And I
(22:46):
realized I had a conversation with God in the closet,
and it was because the closet was the safest place
nobody could hear me. And I was just like, how
could you do this? I can't watch my son die?
And it was just like he's said. He was like,
I know how it feels like it's difficult, and that gets.
Speaker 4 (23:05):
Me every time.
Speaker 5 (23:07):
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
the quote unquote perfect little Christians on the face of it,
but I did not.
Speaker 4 (23:23):
I was so angry. I didn't want to.
Speaker 5 (23:24):
I would leave during during worship songs. I deprogrammed the
Christian stations off my radio from my car.
Speaker 4 (23:32):
I was just like, I can't this all. I felt
like such a hypocrite.
Speaker 5 (23:36):
And so I decided, if 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,
and he wasn't angry that I was angry. He was like, Okay,
(23:59):
finally you take you're 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
(24:20):
doing this? He my son just stopped walking, and I'm
like why. I've learned to still. It's not that I'm
asking the wrong question. It's not that I'm asking why
is wrong. It's now I'm like, okay, why, why why
are you doing this? 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
(24:43):
not like, why are you doing this to us? It's okay,
why are you letting us?
Speaker 3 (24:47):
Well?
Speaker 2 (24:47):
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
as belief, but with you know, with regret, is that
(25:09):
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?
Speaker 1 (25:22):
Right?
Speaker 4 (25:23):
Right? I can see?
Speaker 5 (25:24):
I think with time you can look back and see
how he had.
Speaker 4 (25:28):
His hand and everything.
Speaker 5 (25:29):
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.
Speaker 4 (25:37):
Up to open up to God.
Speaker 5 (25:39):
I was so busy trying to keep him out and
trying to be angry at him. I wasn't letting anything
else in.
Speaker 2 (25:45):
And so yeah, that's so good. And again it's a process,
right Kerry, 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 life better? You know?
Speaker 1 (26:01):
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 6 (26:19):
And boy did it hit me hard.
Speaker 1 (26:21):
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 6 (26:30):
You, just you wrestle.
Speaker 1 (26:32):
I think about Jacob 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
(26:53):
I thought it was going to look like.
Speaker 2 (26:55):
Yeah, the idea that in our limitations of emotions, in
our way to process things, there it does feel like
it's punishment. What have I done Lord 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
(27:16):
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 3 (27:30):
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 they tell
the story in the book. She comes up to me
and says, I just can't wait to see what God's
(27:51):
going to do in your family. And I slept on
a good Christian girl smile and went yeah.
Speaker 2 (27:56):
And then I think so much.
Speaker 3 (27:58):
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 you done? Amiss? Like
I've done this, God, and what have you done? And
(28:19):
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 Abraham and Sarah and they
have Haygar, the maid servant. Sarah's not being very kinder
(28:40):
and she goes out in the desert and God sends
her back to the hard situation. But she says, you
are a God who sees me. And I've come to
realize that being seen makes all the difference, regardless of
powerful what we're going through.
Speaker 2 (28:55):
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
(29:17):
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, And
it looks different, and it looks different, it.
Speaker 3 (29:28):
Looks completely different than another child.
Speaker 2 (29:31):
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. What 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.
(29:51):
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 way he's prioritized appropriately when these children need so
much of you.
Speaker 1 (30:04):
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
(30:26):
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 to the office,
and I thought, how do you not know this?
Speaker 2 (30:39):
And it's interest you.
Speaker 6 (30:41):
Yeah, I was.
Speaker 1 (30:42):
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 priority and different seasons. There were, you know, the
season of the hospital stay when we were in for
(31:04):
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 6 (31:20):
Still a priority.
Speaker 2 (31:21):
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 (31:37):
Sometimes there's a I did not handle that so well,
So let's back track and go at this a different way.
Speaker 4 (31:44):
Yeah, there's some apologizing and I think it's.
Speaker 1 (31:47):
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 there have been times that we've
gotten arguments over the most rediculous things, and I think
it's asking that deeper question, Okay, why, like what is it?
Speaker 6 (32:06):
What's the real thing that's going on here? Yeah? Is
it grief? Is it frustration? Is it anger? And then
we have actually done that where we've said, Okay.
Speaker 1 (32:13):
Let's back up five minutes and start, let's start over.
Let's just restart this conversation.
Speaker 2 (32:19):
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 or joyful moments.
(32:39):
But you're on the beach, I think in this story,
and something joyful happened, What was it? What did it
teach you? More importantly, so.
Speaker 5 (32:46):
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 was twelve. My
(33:06):
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 the 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 wanted to
(33:27):
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.
Speaker 4 (33:42):
They'll do all the work. That's what he said.
Speaker 5 (33:44):
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. And the joy of that is 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
(34:04):
I were focused on the awkward gate, the struggling through
the sand.
Speaker 4 (34:09):
Is he going to be? Is he going to have fun? Enough?
Speaker 5 (34:11):
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 2 (34:20):
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, 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 5 (34:37):
Yeah, It's almost like God was just saying, just lift
your face off, just lift it up for a second,
look around you, And I just realized I needed a
focus on the joy.
Speaker 2 (34:46):
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.
(35:10):
I think even in the book, you referenced how attachment
disorder the children can learn to play the spouses 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
(35:33):
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 3 (35:41):
Right, It's really common in kids with attachment disorder to
target the nurture and 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 husband has never fully seen all the behavior
(36:06):
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.
Speaker 2 (36:15):
On to get the full story.
Speaker 3 (36:16):
Get the full story probably unbelievable or unbelievable. 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
that and he carries different things than I do. You know,
(36:38):
he hears all that I have to tell him about
what we're walking through. So I had to 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,
but 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.
(36:59):
This kids is the life right now?
Speaker 2 (37:01):
You're the problem.
Speaker 3 (37:02):
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 is 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
(37:23):
thing 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 does
it's like it's a what happens at home? Don't tell Amy,
(37:44):
because it is. I am immediately stressed again. So we
kind of have some things that we've that he's walls
we built around me that he takes the brunt of
some of that because he can hear all the bad
things and go, okay, well, I'm like up all night
worrying about all the bad things.
Speaker 2 (37:58):
Well, and I so appreciated 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 tears
(38:21):
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 is sky I
to stick with it and be there with them. Let's
end here, what can the church generally and Christians generally,
(38:42):
what can 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. What could
churches do to help accommodate special needs children in all
(39:05):
facets mental, physical? And then what are those things that
we say that could really just take the legs out
from under you.
Speaker 1 (39:13):
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,
because you do have families that come in and maybe
you know their their disabilities are hidden or I you know,
(39:34):
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 board on
all levels because you know, I have a nineteen year
old son who's teaching first grade boys and he needs
(39:56):
to know, yeah, how to you know, he obviously has
some level of unders standing with his brother, but he
needs to know those things.
Speaker 6 (40:03):
And I think the one thing that's not helpful is.
Speaker 1 (40:05):
God won't give you more than you can handle that
versus taken out of context.
Speaker 2 (40:09):
You get that one quite a bit. God won't give
you more than you can I can imagine that will
come handle it for.
Speaker 4 (40:15):
Me then, right, yeah, oh yes he can.
Speaker 3 (40:19):
Yeah.
Speaker 2 (40:19):
I mean it's sent with the right intention, but man,
does it throw salt in the wound?
Speaker 1 (40:23):
Right.
Speaker 6 (40:24):
It's like, I don't I cann't handle this without the Lord.
So yeah, we.
Speaker 5 (40:30):
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 an a divorce with Dushen
not and that's what we read at the time, how
(40:50):
true it was, whatever, but it scared us enough that
really just.
Speaker 4 (40:53):
Pray over our marriage.
Speaker 5 (40:54):
And I have one elder that will come up to
me and he puts his hand on my shoulder and
he said.
Speaker 4 (40:58):
How are you doing. I'm like, oh, I'm good, fine,
you know it just fine, and he's like, how are
you doing?
Speaker 2 (41:06):
Right? He wants the truth.
Speaker 4 (41:07):
He wants the truth, and that's just it.
Speaker 5 (41:09):
And he's present and he doesn't want the fine.
Speaker 4 (41:13):
He wants to know.
Speaker 5 (41:15):
And he will say, how can I pray for you
this week? And it is a week to week thing,
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
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
(41:36):
being superficial, but he wants he wants the nitty gritty.
Speaker 2 (41:40):
Yeah, and that makes you feel seen. It does again, Yeah,
that he cares.
Speaker 4 (41:44):
Yeah, Like Amy said, it's just being seen.
Speaker 2 (41:46):
Right.
Speaker 3 (41:47):
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,
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 walked out of church.
Speaker 2 (42:08):
Yeah, I think of that. That's really saying maybe a
portion of that group walk away from the Lord.
Speaker 1 (42:13):
Right.
Speaker 5 (42:14):
Our church does a buddy program, and so we started
a 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, so
this is the this is what makes them awesome.
Speaker 4 (42:29):
And here with my.
Speaker 5 (42:30):
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 with the crank, or they weren't listening, you know,
it's yeah, it's just saying I enjoyed your child.
Speaker 2 (42:53):
Yeah. Wow, the power of that.
Speaker 5 (42:55):
Yeah, And then my husband, I have forty five minutes
to actually focus on the word and to worship.
Speaker 2 (43:01):
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
(43:23):
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 successful in that
endeavor if they have that much help. But think of that,
that's a lot saying we need five families to help
(43:44):
us raise this child or these children. Right. Well, listen,
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
(44:08):
do it better and to know God deeper. So thank
you for being.
Speaker 4 (44:11):
Here, thanks for having having us.
Speaker 2 (44:12):
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,
(44:34):
and trust others we'll cover the cost of that. It
might be a friend or 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,
(44:57):
You're not going to surprise us. If you need help
to talk with a counselor, et cetera, just get a
hold of us. Our number is eight hundred.
Speaker 6 (45:05):
The letter A and the word family eight hundred two three, two, six.
Speaker 4 (45:08):
Four five nine were stopped by the program description.
Speaker 2 (45:11):
For all the details and on behalf of Jim Daily
and the entire team.
Speaker 4 (45:17):
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
thrive in Christ
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
(00:22):
I be like my older brothers in play basketball?
Speaker 2 (00:32):
Amy, Sarah Carrie, welcome, Thank you for having much. It's
so good to have you here. And I said this
a moment ago off Mike, but you're heroes and your
husband's 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
(00:54):
talk about that today. Let's start with a quick overview
of each of your family situations. Amy, you have a name,
so let's see. You know, we're right back in school.
What's your situation for the listeners and viewers?
Speaker 3 (01:06):
Well, and Ami 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. Two
(01:27):
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 grayposis, which kind of looks like polio. We's small statued,
(01:49):
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.
Speaker 4 (02:04):
So that's our family.
Speaker 2 (02:05):
Six, and we're 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 (02:20):
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 years this year.
Speaker 2 (02:30):
Congratulations.
Speaker 4 (02:32):
And we have two sons.
Speaker 5 (02:33):
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.
(02:54):
So it's a rare form of muscular gystrophy. It's aggressive, progressive,
and it's terminal. And at the time of diegnosis, he
was given a life expectancy of average of twenty three.
Speaker 4 (03:05):
So much has been.
Speaker 5 (03:06):
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 flipped on its head.
Speaker 2 (03:17):
Yeah all right, Carrie.
Speaker 6 (03:19):
Hi, I'm Carrie. I'm from Ohio.
Speaker 1 (03:21):
I've been married to my husband, Bruce for twenty four
years this year.
Speaker 2 (03:25):
This is not a math test, by the way. Yeah,
make sure you guys know how long you've been married.
Speaker 6 (03:29):
Yeah, it's easy because we were married in two thousand.
But yeah, easy about plan.
Speaker 1 (03:34):
Yeah, 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 beefida.
Speaker 6 (03:45):
He was actually prenatally diagnosed.
Speaker 1 (03:47):
I went in for my twenty week altarsound, 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 had a medically fragile baby.
He was hooked up to a feeding pump twenty hours
a day, had a trake and a ventilator.
Speaker 6 (04:03):
He still has this trait. He's still on his ventilator
when he sleeps.
Speaker 1 (04:06):
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 written a lot of
rollercoasters and had a lot of curve balls.
Speaker 2 (04:21):
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. You know, again,
for those of us that have not had that situation,
help us better understand what that is like. When the
(04:41):
doctor sits down with you and says, well, this will
be what the rest of his or her daughter son's
life will be like.
Speaker 1 (04:49):
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. I was a little bit oblivious
to it. And actually he did almost pass out, and
I can tell that story with his permission.
Speaker 6 (05:05):
It was kind of some leave. It was overwhelmed in
the moment, but it was.
Speaker 1 (05:08):
His stomach dropped. 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 6 (05:24):
Life was great. And then all of a sudden, and I.
Speaker 1 (05:27):
Had some experience with disability. I knew a girl was
spinding benefit in our church and had grown up with.
Speaker 6 (05:33):
A friend that had down syndrome.
Speaker 1 (05:35):
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. 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 2 (05:50):
Yeah, how about you, Sarah.
Speaker 5 (05:53):
I actually worked for an orthopedist at the time, and
he was the one that put my son into physical therapy.
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.
(06:13):
And I knew it was the 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.
Speaker 4 (06:29):
I could tell in his voice.
Speaker 5 (06:31):
So I called the doctor that I worked for and
he said, wow, we actually have another doctor 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
(06:52):
didn't even know how to spell it. And so we
waited two months before we were able to get in
to see a doctor about two hours agay, and she
took one look.
Speaker 4 (07:02):
He got up off the floor.
Speaker 5 (07:04):
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 duchene boy, and
here's a free camp and we'll see you back in
six months.
Speaker 4 (07:15):
Just take him home and love him.
Speaker 5 (07:17):
There was basically basically, there's nothing you can do but
love him.
Speaker 2 (07:20):
And so wow, that sounds so in many ways right,
but empty it did. I mean, that's all I can do, right.
Speaker 5 (07:29):
Right, And we had no no. 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 2 (07:42):
It was different than other kids.
Speaker 5 (07:43):
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 4 (07:54):
He's like, well, can't it.
Speaker 5 (07:54):
Be this, well, can't it be this type of muscular
district fee And I just finally put my hand on
his leg and I said, no, it's dushe. So we
knew we needed to do something. Not we weren't under
any illusions of our delusions of curing it, but we
knew we needed to. We we had loving them down
pat we needed to do something to give them a
(08:15):
quality of life.
Speaker 2 (08:16):
I can't imagine that feeling of the unknown but known
right right. It's a weird comment, Amy 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. Uh An observation
(08:39):
that trauma has caused mental disconnections for these children. So
describe that moment when you and your husband are going okay, right.
Speaker 3 (08:47):
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 AHA moment was
(09:09):
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 gut just dropped,
(09:31):
like I don't know how she likes to be held,
And I felt so much shame, like what kind of
mom doesn't know how to hold her child? And that
it didn't occurre 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, which is
(09:53):
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 no love them the most, and 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 out what
(10:13):
the actual diagnosis is.
Speaker 2 (10:14):
Yours is kind of unraveling as you go over the
years because it's not a physical again, a physical diagnosis.
Let me ask you about the issue of grief. I
think Carrie, you started that. You mentioned it briefly about grief.
You almost feel guilty having grief, you know, like, what
(10:37):
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
(10:57):
adding more shame to whatever shame you might have already.
Speaker 1 (11:01):
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
(11:21):
of the shoulds of grief. I know, I had a
friend Tommy 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
(11:41):
had just gotten out of a week long hospital stay
where we had taken the ambulance to the hospital 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 activity.
My daughter was home and she was, you know, a toddler,
(12:04):
and she didn't know where mama was. And I remember
I actually went to the library to return some books
that my daughter had kind of like ruined as a toddler.
You know how they just kind of do whatever they
want with books.
Speaker 2 (12:15):
We have no idea what you're talking about.
Speaker 1 (12:17):
And I walked up to the desk and the lady
just she had no compassion whatsoever.
Speaker 6 (12:22):
I was going to have to pay full price to
replace these books.
Speaker 1 (12:24):
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
(12:47):
I be like my older brothers and play basketball? And
I'm also identifying that he's on his own graving 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
feelings and when the waves of grief come, you know,
I saying, I journal and then also just to turn
(13:09):
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 6 (13:18):
But that also takes trust with God.
Speaker 2 (13:21):
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 3 (13:30):
Well, we had moved into a new house and I
was really looking forward to the lilac bushes that were
gonna bloom 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 4 (13:51):
Yeah?
Speaker 3 (13:52):
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 this
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
(14:14):
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
(14:35):
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
(14:55):
think with behavioral issues, because it's kind of a silent
suffering you're doing, because it has their behaviors 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
(15:18):
and beauty that God has put in my life every day.
They may not look like I thought they were going
to look that 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
attentive to those moments of what we have.
Speaker 2 (15:39):
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 saying it, because again, it's so right there for you,
(16:03):
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 you? Do you feel like
(16:25):
some of the moms that don't have special needs children
like they're kind of back and 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 4 (16:39):
Yeah, I think it's like a crash course.
Speaker 5 (16:41):
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 know, and it's like like, Okay, I
think 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. And I think that's
(17:03):
a really great word.
Speaker 4 (17:05):
It's not.
Speaker 5 (17:07):
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 4 (17:22):
And so yeah, it's.
Speaker 2 (17:24):
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,
(17:44):
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
(18:04):
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, I think.
Speaker 1 (18:19):
So It's taken me a long time to get there,
and there's certainly days I don't feel that way.
Speaker 4 (18:23):
You know, Oh, of course it's.
Speaker 1 (18:26):
But I think if I'm completely honest, I know I
have said this before. I don't think if we would
have had Toby, I would have relied on God the
way that I've learned to, 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
(18:46):
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 allowed this in my life,
it would be a really different person. It might have
been another trial they allowed to happen.
Speaker 2 (19:05):
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
(19:26):
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, they're with the Lord,
they are forever going to be Okay, do you think
(19:50):
about that?
Speaker 5 (19:51):
I think in our situation, because we have that terminal
word that is always over our heads, that I know,
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 want him,
(20:14):
and I will get him back and have him exactly
the way I want him.
Speaker 4 (20:17):
So that took a lot of time to figure that out.
But I you know, I look to heaven.
Speaker 5 (20:21):
And I think kind of almost what you said, your
children are. I can't wait to see how he.
Speaker 2 (20:30):
Is.
Speaker 5 (20:31):
But I just think his heart is exactly the way
his heart needs to be right now. We don't have
the behavioral 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 yeah, when
you have that terminal diagnosis, heaven is definitely something to
look forward to and right, and I think that we
(20:52):
did in a way, but it really shines a light
on it. It makes you put there's something behind the
words that you speak as a Christian. 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 2 (21:12):
Yeah, yeah, that's so good, jumped in.
Speaker 3 (21:16):
Yeah.
Speaker 1 (21:16):
I think for me, I just think often of that
verse that talks about our light and momentary afflictions, and
it doesn't feel light or momentary at times. My husband
said one time, I can't wait to throw football with
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
(21:38):
is short and light of what God has for us
in eternity, and that makes it worth it.
Speaker 2 (21:44):
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'd talk about that brutal truth where things aren't
flowing well, and maybe you shake your fist at the
(22:05):
Lord 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 (22:19):
I likened right after diagnosis to a fog.
Speaker 4 (22:23):
Once that fog started to.
Speaker 5 (22:25):
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 side of him. How
could a loving God watch my son go through this?
And it was really difficult to go through. And I
(22:46):
realized I had a conversation with God in the closet,
and it was because the closet was the safest place
nobody could hear me. And I was just like, how
could you do this? I can't watch my son die?
And it was just like he's said. He was like,
I know how it feels like it's difficult, and that gets.
Speaker 4 (23:05):
Me every time.
Speaker 5 (23:07):
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
the quote unquote perfect little Christians on the face of it,
but I did not.
Speaker 4 (23:23):
I was so angry. I didn't want to.
Speaker 5 (23:24):
I would leave during during worship songs. I deprogrammed the
Christian stations off my radio from my car.
Speaker 4 (23:32):
I was just like, I can't this all. I felt
like such a hypocrite.
Speaker 5 (23:36):
And so I decided, if 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,
and he wasn't angry that I was angry. He was like, Okay,
(23:59):
finally you take you're 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
(24:20):
doing this? He my son just stopped walking, and I'm
like why. I've learned to still. It's not that I'm
asking the wrong question. It's not that I'm asking why
is wrong. It's now I'm like, okay, why, why why
are you doing this? 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
(24:43):
not like, why are you doing this to us? It's okay,
why are you letting us?
Speaker 3 (24:47):
Well?
Speaker 2 (24:47):
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
as belief, but with you know, with regret, is that
(25:09):
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?
Speaker 1 (25:22):
Right?
Speaker 4 (25:23):
Right? I can see?
Speaker 5 (25:24):
I think with time you can look back and see
how he had.
Speaker 4 (25:28):
His hand and everything.
Speaker 5 (25:29):
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.
Speaker 4 (25:37):
Up to open up to God.
Speaker 5 (25:39):
I was so busy trying to keep him out and
trying to be angry at him. I wasn't letting anything
else in.
Speaker 2 (25:45):
And so yeah, that's so good. And again it's a process,
right Kerry, 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 life better? You know?
Speaker 1 (26:01):
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 6 (26:19):
And boy did it hit me hard.
Speaker 1 (26:21):
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 6 (26:30):
You, just you wrestle.
Speaker 1 (26:32):
I think about Jacob 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
(26:53):
I thought it was going to look like.
Speaker 2 (26:55):
Yeah, the idea that in our limitations of emotions, in
our way to process things, there it does feel like
it's punishment. What have I done Lord 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
(27:16):
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 3 (27:30):
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 they tell
the story in the book. She comes up to me
and says, I just can't wait to see what God's
(27:51):
going to do in your family. And I slept on
a good Christian girl smile and went yeah.
Speaker 2 (27:56):
And then I think so much.
Speaker 3 (27:58):
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 you done? Amiss? Like
I've done this, God, and what have you done? And
(28:19):
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 Abraham and Sarah and they
have Haygar, the maid servant. Sarah's not being very kinder
(28:40):
and she goes out in the desert and God sends
her back to the hard situation. But she says, you
are a God who sees me. And I've come to
realize that being seen makes all the difference, regardless of
powerful what we're going through.
Speaker 2 (28:55):
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
(29:17):
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, And
it looks different, and it looks different, it.
Speaker 3 (29:28):
Looks completely different than another child.
Speaker 2 (29:31):
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. What 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.
(29:51):
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 way he's prioritized appropriately when these children need so
much of you.
Speaker 1 (30:04):
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
(30:26):
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 to the office,
and I thought, how do you not know this?
Speaker 2 (30:39):
And it's interest you.
Speaker 6 (30:41):
Yeah, I was.
Speaker 1 (30:42):
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 priority and different seasons. There were, you know, the
season of the hospital stay when we were in for
(31:04):
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 6 (31:20):
Still a priority.
Speaker 2 (31:21):
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 (31:37):
Sometimes there's a I did not handle that so well,
So let's back track and go at this a different way.
Speaker 4 (31:44):
Yeah, there's some apologizing and I think it's.
Speaker 1 (31:47):
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 there have been times that we've
gotten arguments over the most rediculous things, and I think
it's asking that deeper question, Okay, why, like what is it?
Speaker 6 (32:06):
What's the real thing that's going on here? Yeah? Is
it grief? Is it frustration? Is it anger? And then
we have actually done that where we've said, Okay.
Speaker 1 (32:13):
Let's back up five minutes and start, let's start over.
Let's just restart this conversation.
Speaker 2 (32:19):
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 or joyful moments.
(32:39):
But you're on the beach, I think in this story,
and something joyful happened, What was it? What did it
teach you? More importantly, so.
Speaker 5 (32:46):
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 was twelve. My
(33:06):
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 the 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 wanted to
(33:27):
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.
Speaker 4 (33:42):
They'll do all the work. That's what he said.
Speaker 5 (33:44):
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. And the joy of that is 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
(34:04):
I were focused on the awkward gate, the struggling through
the sand.
Speaker 4 (34:09):
Is he going to be? Is he going to have fun? Enough?
Speaker 5 (34:11):
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 2 (34:20):
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, 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 5 (34:37):
Yeah, It's almost like God was just saying, just lift
your face off, just lift it up for a second,
look around you, And I just realized I needed a
focus on the joy.
Speaker 2 (34:46):
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.
(35:10):
I think even in the book, you referenced how attachment
disorder the children can learn to play the spouses 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
(35:33):
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 3 (35:41):
Right, It's really common in kids with attachment disorder to
target the nurture and 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 husband has never fully seen all the behavior
(36:06):
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.
Speaker 2 (36:15):
On to get the full story.
Speaker 3 (36:16):
Get the full story probably unbelievable or unbelievable. 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
that and he carries different things than I do. You know,
(36:38):
he hears all that I have to tell him about
what we're walking through. So I had to 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,
but 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.
(36:59):
This kids is the life right now?
Speaker 2 (37:01):
You're the problem.
Speaker 3 (37:02):
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 is 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
(37:23):
thing 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 does
it's like it's a what happens at home? Don't tell Amy,
(37:44):
because it is. I am immediately stressed again. So we
kind of have some things that we've that he's walls
we built around me that he takes the brunt of
some of that because he can hear all the bad
things and go, okay, well, I'm like up all night
worrying about all the bad things.
Speaker 2 (37:58):
Well, and I so appreciated 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 tears
(38:21):
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 is sky I
to stick with it and be there with them. Let's
end here, what can the church generally and Christians generally,
(38:42):
what can 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. What could
churches do to help accommodate special needs children in all
(39:05):
facets mental, physical? And then what are those things that
we say that could really just take the legs out
from under you.
Speaker 1 (39:13):
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,
because you do have families that come in and maybe
you know their their disabilities are hidden or I you know,
(39:34):
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 board on
all levels because you know, I have a nineteen year
old son who's teaching first grade boys and he needs
(39:56):
to know, yeah, how to you know, he obviously has
some level of unders standing with his brother, but he
needs to know those things.
Speaker 6 (40:03):
And I think the one thing that's not helpful is.
Speaker 1 (40:05):
God won't give you more than you can handle that
versus taken out of context.
Speaker 2 (40:09):
You get that one quite a bit. God won't give
you more than you can I can imagine that will
come handle it for.
Speaker 4 (40:15):
Me then, right, yeah, oh yes he can.
Speaker 3 (40:19):
Yeah.
Speaker 2 (40:19):
I mean it's sent with the right intention, but man,
does it throw salt in the wound?
Speaker 1 (40:23):
Right.
Speaker 6 (40:24):
It's like, I don't I cann't handle this without the Lord.
So yeah, we.
Speaker 5 (40:30):
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 an a divorce with Dushen
not and that's what we read at the time, how
(40:50):
true it was, whatever, but it scared us enough that
really just.
Speaker 4 (40:53):
Pray over our marriage.
Speaker 5 (40:54):
And I have one elder that will come up to
me and he puts his hand on my shoulder and
he said.
Speaker 4 (40:58):
How are you doing. I'm like, oh, I'm good, fine,
you know it just fine, and he's like, how are
you doing?
Speaker 2 (41:06):
Right? He wants the truth.
Speaker 4 (41:07):
He wants the truth, and that's just it.
Speaker 5 (41:09):
And he's present and he doesn't want the fine.
Speaker 4 (41:13):
He wants to know.
Speaker 5 (41:15):
And he will say, how can I pray for you
this week? And it is a week to week thing,
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
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
(41:36):
being superficial, but he wants he wants the nitty gritty.
Speaker 2 (41:40):
Yeah, and that makes you feel seen. It does again, Yeah,
that he cares.
Speaker 4 (41:44):
Yeah, Like Amy said, it's just being seen.
Speaker 2 (41:46):
Right.
Speaker 3 (41:47):
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,
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 walked out of church.
Speaker 2 (42:08):
Yeah, I think of that. That's really saying maybe a
portion of that group walk away from the Lord.
Speaker 1 (42:13):
Right.
Speaker 5 (42:14):
Our church does a buddy program, and so we started
a 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, so
this is the this is what makes them awesome.
Speaker 4 (42:29):
And here with my.
Speaker 5 (42:30):
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 with the crank, or they weren't listening, you know,
it's yeah, it's just saying I enjoyed your child.
Speaker 2 (42:53):
Yeah. Wow, the power of that.
Speaker 5 (42:55):
Yeah, And then my husband, I have forty five minutes
to actually focus on the word and to worship.
Speaker 2 (43:01):
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
(43:23):
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 successful in that
endeavor if they have that much help. But think of that,
that's a lot saying we need five families to help
(43:44):
us raise this child or these children. Right. Well, listen,
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
(44:08):
do it better and to know God deeper. So thank
you for being.
Speaker 4 (44:11):
Here, thanks for having having us.
Speaker 2 (44:12):
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,
(44:34):
and trust others we'll cover the cost of that. It
might be a friend or 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,
(44:57):
You're not going to surprise us. If you need help
to talk with a counselor, et cetera, just get a
hold of us. Our number is eight hundred.
Speaker 6 (45:05):
The letter A and the word family eight hundred two three, two, six.
Speaker 4 (45:08):
Four five nine were stopped by the program description.
Speaker 2 (45:11):
For all the details and on behalf of Jim Daily
and the entire team.
Speaker 4 (45:17):
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
thrive in Christ
Popular Podcasts
NFL Daily with Gregg Rosenthal
Gregg Rosenthal and a rotating crew of elite NFL Media co-hosts, including Patrick Claybon, Colleen Wolfe, Steve Wyche, Nick Shook and Jourdan Rodrigue of The Athletic get you caught up daily on all the NFL news and analysis you need to be smarter and funnier than your friends.
On Purpose with Jay Shetty
I’m Jay Shetty host of On Purpose the worlds #1 Mental Health podcast and I’m so grateful you found us. I started this podcast 5 years ago to invite you into conversations and workshops that are designed to help make you happier, healthier and more healed. I believe that when you (yes you) feel seen, heard and understood you’re able to deal with relationship struggles, work challenges and life’s ups and downs with more ease and grace. I interview experts, celebrities, thought leaders and athletes so that we can grow our mindset, build better habits and uncover a side of them we’ve never seen before. New episodes every Monday and Friday. Your support means the world to me and I don’t take it for granted — click the follow button and leave a review to help us spread the love with On Purpose. I can’t wait for you to listen to your first or 500th episode!
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com