December 15, 2023 • 41 mins
Raising twin daughters with severe intellectual disabilities and autism, working full time and becoming an advocate for people with disabilities would keep Clay busy and challenged over the years. But when his wife was diagnosed with ovarian cancer, he began to wonder why his family had been singled out for so much adversity in this life.
Listen in and hear how Clay Boatright eventually found purpose in adversity and how he learned to view life's challenges as blessings.
Purchase Clay's book here:
https://www.amazon.com/Gods-Plan-Our-Circus-Reinvention/dp/1955711224
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Michelle (00:09):
Well, hey everybody, and welcome back to Qualified,
the place where incrediblepeople share their stories of
overcoming great adversity andloss to inspire you and give you
hope.
I'm Michelle Heaton.
What do you do when your plansdon't work out the way you hoped
?
How do you react when you'retested and tried and you feel
(00:30):
like you're at the end of yourrope?
What would you call a lifefilled with challenges,
including raising twin daughterswith severe intellectual
disabilities and autism and awife who has cancer?
Some might say it's adisappointment or a tragedy, but
my guest today has a refreshingapproach that he chose to take
(00:52):
to the trials he faced in hislife.
In his own witty way, he refersto his life story as a circus.
It's God's plan, but our circus, he says.
He's been an advocate forpeople with disabilities and
served on a host of health andeducation advisory committees,
including board president forthe Ark of Dallas and the Ark of
(01:14):
Texas.
In 2011, he was appointed byPresident Barack Obama to the
president's committee for peoplewith intellectual disabilities
in Washington DC and in 2013, hewas appointed founding chairman
for Texas Health and HumanServices IDD System Redesign
Advisory Committee, which heheld for six years.
He's also an author, havingpublished his first book this
(01:37):
year entitled God's Plan, ourCircus a Family Odyssey through
Autism, death and Reinvention.
His name is Clay Boatwright andit's my pleasure to have him as
my guest on the show today.
Welcome to Qualified
Clay (01:51):
Thank you, Michelle.
I'm delighted to be here.
Thank you for having me.
Michelle (01:54):
Yeah, of course.
Well, Clay, I read your bookand I was really inspired by it.
You and your wife Carol facedmany challenges over the years,
and you talk about how you choseto react to everything that
life threw at you, and you chosehappiness and to appreciate
people and all that you've beengiven in life.
But let's get to the circuspart.
(02:17):
You refer to your life and thebook as a circus, and your sense
of humor just kept me smilingthroughout the book, which was
great.
So can you start off by givingus a little bit of background
about your early life raisingthree daughters, two with
disabilities, and the challengesthat you and your wife Carol
faced on a daily basis?
Clay (02:38):
Sure, absolutely so.
Carol and I were both born andraised in Memphis, tennessee,
met when I had just gotten outof grad school.
She was finishing up herundergrad, I was 21.
She was 20.
And so we met, dated for aboutthree years when we got married.
Career took us to St Louis andin St Louis a year after we got
(02:58):
married, so I guess I was 25,she was 24, we had our first
major adulting experience and wemoved to town.
She went to a doctor, which isnormal when you move to a new
town.
He checked her out.
Everything seemed okay and heasked anything unusual going on.
She said, well, not really, butI got this little bump on my
neck.
So he said, hmm, well, youdon't need a bump on your neck,
(03:21):
let's remove it and test it andsee what it is.
Probably nothing.
Turns out she had Hodgkin'sdisease and Hodgkin's disease is
a form of lymph node cancer.
So that was our firstintroduction into what I call
the world of adulting.
So she went through six monthsof chemotherapy, chemotherapy
and gratefully I got throughthat.
Well, you know, lost her hair,did the whole routine, but
(03:41):
became through it.
Well, doctors suggested we waita few years before having kids
and we're like, okay, that'sfine, we were planning anyway.
So in that course of time wemoved from St Louis down to
Houston and then ultimately toDallas and so we had our first
child, blair, when we'd beenmarried about eight and a half
years.
So Blair was the epitome of theperfect baby.
(04:03):
I mean happy all the time,smiled nonstop, hardly ever
cried, absolutely.
It was just delightful.
And Caroline and I were baskingin that, but also realizing
that you know what lightningdoesn't strike the same crib
twice.
So the odds of this happeningagain are low.
So we went booked.
(04:23):
About three years later, afterBlair was born, we decided to
try again.
We only wanted to have twochildren.
Total got in his sense of humor, had a better idea and gave us
identical twins.
So that took us from playingtwo on one to his own defense
pretty quickly.
Michelle (04:40):
So that's a lot going on.
Already.
Carol undergoes cancertreatment early in your marriage
.
You take that on together.
She gets a clean bill of health.
Then you have your firstdaughter, Blair she's now three.
And then you get the news aboutthe twins and you're preparing
for that zone defense.
But you told me that Carol'spregnancy seemed way different
this time and that she waspretty sick and had to be
(05:04):
hospitalized.
And then the babies ended upcoming seven weeks early and had
to be in the NICU for a while.
But that was just the beginningof some of the challenges.
Talk about what happened next.
Clay (05:15):
We brought him home.
Carol had breastfed Blair for ayear Thought it was great, the
twins about the third day home.
It wasn't working.
So, again, everything wasunusual.
So, moving forward, I use theexample we went from a two on
one defense to a zone defenseand the house management thing,
(05:36):
which is true for many familieswho have twins.
You understand the chaos oftrying to keep up with it.
So again, unlike their bigsister, they cried almost
constantly and it wasn't one ofthose where they would take
breaks in terms of being upset,but they never timed it together
.
So it was never like they wereboth crying at the same time and
(06:00):
then they were both quiet atthe same time.
It was like it was one or theother which meant you never had
a break.
There was never a time to calmdown.
So that went on for a while.
And then at the 24 months wellbaby visit, we go to our
pediatrician and you go to thosewell baby visits when they're
(06:21):
young and they have thesemilestone checklist that you go
through to using X number ofwords or they crawling or they
doing whatever, and gives us thelist of like 25 questions.
I'm holding I think Paige andCarol is holding Mia we go
through the checklist for ourindividual baby we're holding in
, we get to the bottom and welook at each other and we
(06:44):
realize something.
Something was up.
So one of us had checkedanything off the list, right,
which is why they have the list.
Yeah, well, that's probably notgood.
So pediatrician came in andsaid yes, something's up.
And he sent us two Eastersealswho did some assessments and
came back initially with adiagnosis of what we now call
(07:07):
intellectual disabilities andthen autism was added a couple
years later and we didn't knowat the time, but as time went on
we discovered that theirdisability was very much on the
severe end.
So the best way to describe itis that Paige and Mia are now 23
.
They are nonverbal so they'venever spoken in the disability
world.
(07:27):
They need assistance with allactivities of daily living.
ADL is what it's called.
So they need help witheverything bathroom related.
They need help getting dressed,undressed, they can feed
themselves, which is good, andthey are mobile.
I used to laugh that the greatthing is they're mobile.
The challenge is they're mobile, so they think there was a
(07:48):
point where we call it elopement, where they would just
kind of take off.
But they've gotten that out oftheir systems now.
Michelle (07:56):
Yeah, that sounds like you really had your hands full
at that point.
You now have the girlsdiagnosis severe intellectual
disability and autism.
You have a lot to learn abouthow to care for them and how
your life will change goingforward.
But before we get into allthose details, I want to talk
about you and more specificallyyour name, because there's a
(08:18):
place in your book where yourefer to the conversation you
have with your mother about yourname and why she chose the name
Clay.
Tell us about that conversationand the significance it would
have later in your life.
Clay (08:31):
So I was probably five years old, plus or minus a year,
and I clearly remember we werein our kitchen growing up and
for some reason I asked mymother where my name came from.
So my name is Clay, it's notshort for Clayton, it is just
Clay and I asked her you know,clay is not a family name, so
grandfather or uncle Clay oranything like that where to come
(08:54):
from.
And I clearly remember hertelling me that when they were
wheeling her into the deliveryroom for me to be born, she
thought about a Bible verse andit was the verse in the Bible
where Jesus sped in the dirt,formed the clay from the sped
and put it on my eyes of theblind man.
(09:15):
And she was thinking that whenthey were wheeling her in.
So thinking about him formingthe clay.
That's why she then told my dadwhat would have happened.
They decided to name me Clay,coming from that.
So five or six years old, I'mlike, oh, that's kind of
interesting, I've named aftersomething about Jesus and I
would even go in the back of mymemory.
(09:35):
You know I would remember thatas time went on.
I didn't put a lot of thoughtinto it, but something to think
about that's every couple ofyears and crossed my mind.
So move the calendar aheadabout 35, 40 years and in Paige
and Mia we've got the BoatwrightCircus in full speed, Paige and
(09:55):
Mia with their disabilities,and I was starting to get more,
a little bit more into thedisability community and trying
to understand it a little bitbetter.
And one day we, for a shortperiod of time, we were
attending church here in theDallas area and Chuck Swindoll
it's Stoneborough CommunityChurch.
Chuck Swindoll, fairlywell-known pastor and author, is
(10:17):
the pastor, he's the seniorpastor at Stoneborough.
So we were going there and oneSunday we were listening to
Chuck Sermon and he's the titleof the sermon is when your Gift
Comes, specially Wrapped and itwas about children with
disabilities because he has ason with a grandson, rather a
grandson with autism.
So I'm taking close notes.
And he gets to a certain verse,a Bible verse, one of the Bible
(10:41):
verses he was using, and it'sJohn 9, 1 through 3.
And John 9, 1 through 3 goesthis way as he, meaning Jesus,
came along, he came across a manwho was blind from birth.
The disciples asked him, rabbi,who sinned this man or his
parents, that he was born blind?
(11:01):
Well, neither this man nor hisparents sinned, said Jesus.
This happened so that the powerof God could be seen in his life
, and I listened to that verseand it resonated pretty deeply
on several different levels.
So, to break it down, the firstpart was this happened, so this
(11:23):
happened means there's purpose.
This happened, so there's aparticular purpose.
What was that purpose?
So that the power of God couldbe seen in his life.
Also important to note that itwas not in response to, it was
not a punishment.
It was not a punishment for theman, it was not a punishment
for his parents.
This happened for a purpose andthat purpose was so that the
power of God could be seen inhis life, and it just resonated
(11:47):
as the father of two childrenwith pretty severe disabilities.
That resonated pretty deep.
Okay, caroline, are not beingpunished for some past sin, and
that God can be reflected in anyof us, including a page in me
which most people wouldn'tactually think.
Michelle (12:03):
Well, that's huge.
You had the realization thatyour circumstances were not in
any way a punishment.
Number one, and then number two, that God can be reflected or
used in any of our lives.
That's amazing, Because I thinkit's natural to wonder about
things like did I bring thisabout?
Is this some kind of punishmentfor something I did?
(12:24):
So then you started to connectthe dots about that scripture,
your name and your purpose.
Talk about how all thathappened.
Clay (12:33):
One afternoon I'm at home and I decide okay, I really like
this Bible verse, I want tomake sure that I'm quoting it
exactly.
So I go into my home office andI've got several different
versions of the Bible that I'vecollected over time, and
normally I read the NIV version,but for some unknown reason
well unknown, maybe a very knownreason, as I was soon to find
(12:56):
out I just have to grab the copyoff the shelf, which was the
revised standard, which,interestingly enough, was the
version my mom used to read.
So I pulled the revisedstandard off and opened John 9.
One, two, three I'm readingthrough, got it and after I
finished verse three, my eyesglanced down to verse six and
when they did, the breathliterally left my body.
(13:19):
I was like I almost felt myselfgasping for air.
I could feel the hair on theback of my neck pristled up.
You know, it was like you getthat shiver, that kind of runs
down your entire body.
Because verse six is the versewhere it's where Jesus bent down
, spit in the dirt and formedthe clay.
(13:42):
The reason it registered withme is I've probably read verse
six dozen times over the yearsis in most versions that is read
as formed the mud.
Okay, and revised standard,it's worded as formed the clay.
And when I realized that it allcame back from the conversation
with my mom, from 40, you know,30, whatever years ago comes
(14:05):
flooding back and I realizedthis is a big deal because this
verse, which is now resonatingso deeply with me, ties back to
something that happened to mymom, which even was being
wheeled into the delivery roomand actually was significant
enough to form my name.
And that's when it kind ofregistered with me that this
whole there's something going on, you know.
(14:25):
And uh, I was like I'm going tobe, like I'm going to be like
I'm going to be like.
I wasn't sure at that time whatthat was, but it would soon
become a little bit more clearwhat my purpose was.
I would have a God experiencenot long after that.
That provided clarity.
That fits with us, the wholenaming thing.
Michelle (14:43):
Yeah, that's a big deal.
I love how God sort of revealedthat to you and how you're now
starting to see the biggerpicture about the purpose and
plans that were all unfolding inyour life.
So you referred to another Godexperience that really served as
a launching pad for the newdirection you had taken life.
Tell us about that.
Clay (15:04):
So it was a Friday night and Paige and Mia were having a
rough night, so they were havingsome major behavior issues,
meltdowns, kind of crying, andso suddenly Blair was upset
because her sisters were upset.
Uh, carol, my wife, she waskind of at her wit's end into
the week end of the day she was,she was done, she was pretty
fried.
So I did what any good fatherhusband household, the leader of
(15:29):
the family, would do Right, Iwent to bed, you know.
You know, this is what it is.
Everybody's safe.
They will eventually crythemselves asleep and it'll be
fine.
Now just go to bed, figure itout tomorrow.
So I go to bed and I'm layingthere and I'll be honest with
you, I was mad at God.
I really was.
(15:50):
It's like in page and me areabout four or five years old at
that time and I'm mad at God andI'm sitting there thinking God,
I did not sign up for this.
Okay, I am sales and marketingguy, kind of focused on my
career and trying to do the bestI can by the family, but this
was not kind of on my agenda.
So I'm thinking God, why didyou do this?
(16:11):
Why did you do this to Paigeand Mia and, to be blunt, why
did you do this to me?
And that's what was on my mindwhen I fell asleep was God, why
did you do this?
Now, I don't usually go to sleepmad.
When a few times I do, it'salmost like I wake up the next
(16:33):
morning, matter than the nightbefore.
It's almost like the emotionsmarinade a little bit overnight.
But that next Saturday morningI woke up totally different
feeling.
I woke up excited, energized,had fresh air in my lungs, I was
ready to go and seize the worldand the very first words that
entered my head were to helppeople like Paige and Mia, which
(16:57):
I immediately interpreted as tohelp people with severe
disabilities like they have Now.
I mentioned to have sales andmarketing guy doing the career
thing.
Raising the family was notinvolved in nonprofits, was not
involved in really any majorservice activities whatsoever.
As sure as you and I are havingthis conversation, there is no
(17:17):
doubt in my mind.
I fell asleep asking God aquestion and he sent the Holy
Spirit and answered it.
I asked God why did you do this?
And he sent the Holy Spirit andanswered it with to help people
with severe disabilities, likemy children did.
I believe it had to come fromGod, because there's no way I
would have cooked that answer upon my own.
That's right.
(17:39):
That's right.
Michelle (17:40):
o reason I would have.
Clay (17:41):
hat's how you know.
So I am like well, two greatthings happened at that moment.
Number one was it happened.
Number two was I had thewherewithal to realize it had.
So I'm sitting there andthinking, wow, this is a big
deal, so action must be taken.
What do I do?
So I Googled it, of course, ofcourse.
(18:05):
So I go to the family computerthis is 2004, 2005 and I typed
four words and I'm going to askfor forgiveness.
The lingo has changed over time, so I'm going to use page and
me as original diagnosis, whichhas since been improved to
intellectual disabilities.
But I type four words.
The four words were mentalretardation, which was their
(18:25):
original diagnosis.
Dallas, where we live.
Help, okay, god said help people, help people like Paige and Mia
.
That's what I type, hit enterand first thing that came up was
an organization I had neverheard of before called the Ark
of Dallas, and I'm to find outthe Ark system in the United
States is the nation's oldestsystem of nonprofits helping
(18:48):
people with intellectual anddevelopmental disabilities.
Yeah, so I'm looking throughthat.
I'm like, well, this looks likean organization that helps
people like page and me.
So I'm going to compress thenext 15 years into 90 seconds.
So I read their website onMonday morning, reached out to
introduce myself.
Turns out they were looking forboard members.
(19:09):
Within two weeks I'm on theirboard.
It was a board of anorganization I'd never heard of
before.
Within a few years became theirboard president.
So I'm in that process.
I'm meeting people, I'm meetingfamilies, I'm getting to know
the issues people face, got ontothe board and became the board
president of the stateorganization down in Austin.
So in that situation,continuing to meet people.
(19:32):
But I'm also meetinglegislators and I'm meeting
health and human service people,the bureaucracy, the agencies,
and understanding variousprograms and support programs.
And as I'm learning this, I'msharing this back with the other
people that I've met.
You mentioned that I gotappointed to an advisory
committee in Washington byPresident Obama, so I was again
(19:52):
able to continue the learningand the sharing back there and
all along the way I'm able tohelp in an advocacy way,
influence the system for thebetterment of people with
disabilities, but in an alsomore practical way, take the
learnings that I'm getting andsharing them back with all the
various people that I've met.
And so in the course of reallya fairly few years yeah, I'm
(20:17):
doing stuff in Washington, doingsome leadership positions down
in Austin and so on.
All comes from me going to bedmad at God on a Friday night and
that's not exactly.
It's a straight, very shortbridge that went from one to the
other, but anyway.
So that's the first pivotaltestimony, god testimony that
(20:37):
was very influential in theimpact of my life and on my
family.
Michelle (20:41):
Yeah Well, that story is incredible and I love the
fact that you reached out andsought God and so quickly you
heard the answer and then soquickly the wheels were in
motion.
So it was certainly Godordained and confirmed.
As you went through it and soso many years you were living in
the home with these girls,there was a lot of you know
(21:03):
frankly chaos and trials andchallenges, and then you became
an advocate for this personswith disability community Plus
you were working full time andthen you get some news about
Carol and her health again.
Tell us about all that.
Clay (21:19):
So Paige and Mia stayed at home and went all through
school and most of high schoolBlair went off to college.
Paige and Mia there are a fewmore years and even though we
had help at home, by that pointit was pretty tough and, to be
candid, we just ran out of gas,totally ran out of gas.
But because I know the systemand had lots of friends, I
(21:42):
thought it would be fairly easyfor us to find like a group home
set, which is what we'denvisioned Paige and Mia moving
into at some point, even thoughI know everybody in the
disability community in Dallas.
It took a year and a half tofind somebody who would be
willing to work with Paige andMia because of the severity of
their disability.
So finally got led to an agency, a couple who were willing to
(22:04):
work with us, and we got Paigeand Mia placed in a group home
just a few miles from our house.
So we were able to go over asmuch as we wanted and still be
engaged as a family as well aswe could, even though we're not
under the same roof.
So Paige and Mia moving totheir group home.
That was January 2017.
(22:28):
And a couple of months later,carol decides that she's ready
to go back to work.
So she went to work for someonewho we had known over time and
was in her job, getting used tothe modern work experience.
And then six months later shewasn't feeling good at work.
One day, went to the doctor andfound out that she had ovarian
(22:49):
cancer.
So she got that diagnosis sixmonths after everybody moved out
, went through surgery and Ithought they got it all.
Missed check six months afterthe surgery clean bill of health
.
We're thinking, hey, this isgood.
Six months after that she hadanother experience at work of
not feeling well and found outthat it had come back and she,
(23:11):
in the course of six months, itwent from not being visible to a
five pound tumor.
In the course of six months,went through 18 months of chemo,
five different chemoarrangements none of none of
them took and she ultimatelypassed away.
Michelle (23:25):
I'm so sorry, Clay.
Thank you.
Clay (23:27):
Yeah, it was a.
It was a, it was a challenge.
It's funny we look.
I look back at it at hindsightand I'm grateful that we had the
group home set up for Paige andMia at that point, because at
Paige and Mia been at home whileCarol was going through chemo.
I'm sure we would have figuredsomething out, but it was just
(23:49):
easier on everybody to not haveto deal with that.
Michelle (23:53):
One more challenge.
Clay (23:54):
Exactly so, Paige and Mia, they were in a good setup.
Meanwhile, Carol wasn't havingto have that complication while
trying to go through chemo orsomething.
Michelle (24:03):
Yeah, so here you are now at this new place in life.
Paige and Mia are receivinggreat care and located very
close to your home, which isgreat.
Blair's an adult and doing wellin her career, and you and
Carol would have been emptynesters, in a sense, and a new
chapter would have begun.
I can imagine that really pullsa rug out from underneath you.
(24:26):
How did you respond at thatpoint to such a devastating blow
?
Clay (24:32):
When we got the news it was surprising, but my view was
well, for some unknown reason,god likes giving us challenges
to deal with.
That did not say everybody elsegets to deal with, and we've
done a pretty good job thus farof dealing with them.
So let's do it, let's knock itout.
(24:53):
Let's just face it yeah we'rejust going to do it and do work
the regimens.
And we just started plowingthrough it and it was
disappointing.
Every time we would go througha chemo regimen and some months
later he'd come back up.
It's not working, so let's trya new one.
And then no one.
So it's this process ofelimination.
So that that was a beatingafter a while, and certainly
(25:17):
more for Carol than it was forme.
But again I maintain theattitude of well, we keep
working it until it's gone.
Yeah, but the real severity ofthe diagnosis really didn't hit
me until you guess, it wasJanuary 4th 2020.
20, you remember the big day Isaved about?
(25:37):
It was January 4th 2020.
We go go to the doctor andCarol's actually feeling pretty
good.
So some tests she had rightbefore the holidays seem to come
back pretty good.
Some metrics were looking solid.
And we go to go to the doctorand we're sitting there in the
exam room and he comes in withhis chief nurse, doesn't say
(26:01):
hello, doesn't say hi, how areyou?
Nothing.
He comes in, sits down, looksCarol's, we're in the face and
said sweetheart, I'm sorry butwe're still seeing disease
progression and there's nothingelse we can do.
Oh, that's tough.
Talked about the air leaving theroom.
Yeah, and I'm sitting therehearing this and it took me a
(26:26):
minute to register.
I'm like okay.
He says there's nothing elsethat we can do.
So what was the first thing Iasked was oh, so what do we do?
Right?
And I mean it's like okay.
And then he kind of looked atme like I had three heads and
I'm like what, huh?
And I realized at that timethis is one where this may not
(26:51):
work out well.
So I had known that and had itin the back of my head, but you
don't think about it.
And now I have to think aboutit.
Michelle (26:59):
Yeah, clay, that must have been so difficult for the
both of you receiving that newsand then having to process that
information mentally andemotionally.
I know you've already beenthrough so much in your lives
and you guys have trulyweathered the storms together,
but now this news would reallytake you and your faith to a new
level.
And so I recall in the bookthere's a chapter called From my
(27:23):
Side to Christ Side, and in ityou describe Carol's final
moments in life, and it wasreally a tough read because you
were describing the way you saygoodbye to her and you talk
about how, after that, onlythree days later, you had
another revelation you felt wasfrom God.
That would change the way thatyou would view her passing and
(27:46):
your grieving process, and I'dlove for you to talk about that.
Clay (27:50):
So, as I mentioned, carol died on February 11, 2020.
So three days later, of course,is Valentine's Day, february 14
.
Blair had come back to Dallasfrom Nashville where she was
working for her mom's servicesand so on, and she and her
boyfriend at the time nowhusband wanted to go out for
(28:12):
Valentine's Day.
So they went out forValentine's Day, go ahead, they
go out.
And that night I'm hungry,looking for something for dinner
.
So I go into a grocery storenear our house, as I had a
million times and I walk inthere and you know, I'll be
honest with you I'm pretty down,sad and depressed.
(28:32):
Again, I'm kind of a positiveguy, but like anyone, I get down
.
I'm thinking, okay, well, thissucks, it's Valentine's Day.
It's the first Valentine's Daythat Carol and I had not been
together in 33 years, includingthe dating period.
Carol was not only my bestfriend, but arguably my only
(28:54):
friend, to be totally candid.
She's now gone.
Talked about loneliness, it wasstark.
And again, the holiday,valentine's experience.
I'm just feeling down anddepressed and I'm walking
through the store doing this.
What was me?
Life sucks, god.
Why do you keep doing thesethings to us?
(29:15):
And I get to aisle nine, thehaircare aisle.
Why?
Haircare aisle, I don't know,it may not be relevant, that's
where it happened.
And aisle nine in an instanteverything changed.
It's kind of like that Saturdaymorning I talked about a moment
ago with me.
In an instant I went from beingsad and down-trodden, depressed
(29:36):
, suddenly upbeat, enthusiastic,a smile probably came on my
face and at that moment, Ibelieve, god revealed two things
to me with absolute clarity.
I know where my brain went, soI know that I thought the two
things.
So they had to come again.
They had to come from God,because why would I have?
(29:56):
I would not have cut these upon my own, given my mental state
of that moment.
So God revealed two things tome with absolute clarity.
Number one was Carol's doinggreat.
She's doing a lot better thanthe rest of us.
Yeah, she was a very strongbeliever in Christ and, as a
result, she was experiencingwhat all we Christians aspire
(30:19):
for, and that is to spendeternity with God.
She's not in pain, she's notworried about the chaos of
craziness going on in this world.
She is doing great.
So that was the first place.
Was Carol's doing great?
I could take satisfaction inthat Relief in that.
So that was number one.
Number two how to do with me.
(30:39):
So I was 55 years old at thetime and I'm 58 now.
So I was 55.
I had been married for 30 years.
So doing some basic math, godwilling and I mean that
literally I may still haveanother 30 ahead of me.
So in terms of this wholeadulting thing, I'm only halfway
(31:03):
done.
For the first time in my life, Ihad virtually no obligations
and responsibilities.
Blair was out of college,working in a full time job,
doing great her career, got agroup home set up for Paige and
Mia.
I'm Carol and I were theirguardians, but we weren't having
to do the day to day heavylifting anymore, which was a big
(31:25):
deal, and we've got the systemset up to kind of take care of
their needs.
Carol is now doing better thanall of us and hanging out with
God, so I can quite literally dowhatever I want.
And I thought well, thatdoesn't happen very often.
(31:46):
So the million-dollar questionwas okay, God, you've put me in
this position, what do you wantme to do with it?
And that was three and a halfyears ago.
I think the answer to thatquestion is still being written.
I think the book is part ofthat.
(32:06):
To be honest with you MichelleI think you and I having this
conversation may be part of thatStill to be determined on those
things but the realization thatCarol's doing great and that I
have opportunity that I wouldnot have had otherwise, that God
can use in some way, there's acertain level of excitement and
(32:30):
anticipation attached to that,the unknown of okay, I don't
know what this is going to be,but we're going to give it a
shot.
There's an example I've used.
I don't know who quoted itfirst.
Several pastors have beengiving credit for this, but it's
a nice perspective and that is.
There's a reason that ourwindshield is huge and our
(32:53):
rear-view mirror is small isbecause what's in front of us is
significantly more importantthan what's behind us.
When I first heard that, itresonated deeply because it is
so true, it is absolutely trueand this was really important
for me with dealing with Paigeand Mia and helping raise them
(33:13):
is I never got caught up in, oh,what caused their disability or
what caused their autism or,aside from me, that Friday night
experience of going to bed madat God, never really got caught
up in the why why why even withCarol and then with Carol's
challenges and cancer and so on.
I never spent time on that.
I always was focused on what dowe do?
(33:34):
What's the solution?
What's the best course ofaction?
Okay, can't solve, there is nocure for Paige and Mia's
disability Okay, well, what'sthe best course of action to
give them the highest quality oflife possible?
So that was always been myattitude.
And with Carol's passing, thesame thing applied there and God
basically said don't feel badfor Carol.
(33:54):
So, okay, what's the point offeeling bad for myself?
And that's kind of been mynatural attitude all along.
Michelle (34:03):
You know, I've talked to a lot of people in the wake
of great losses and the commontheme seems to be that it takes
time, that the pain nevercompletely goes away, but that
in time it lessens and softensand becomes more bearable.
But I really want to take thisopportunity to talk with you
because of the way that Godtruly showed you in a very short
(34:26):
span of time, when it takes alot of us years to get our
brains around, that our lovedones, who are believers, are
really doing great and thatwhile grieving and mourning our
natural and normal reactions totheir loss, we can find great
satisfaction and relief inknowing that they're doing way
better than they've ever been,and we can actually find joy in
(34:48):
that and then eventually purposein our circumstances, like you
have.
Well, thanks for sharing that,and I love all the great points
you made and the lessons youlearned, because they're very
good.
You told us that early on youlearned that your circumstances
were not given to you as apunishment or that they happened
as a result of something youdid, but so that the power of
(35:11):
God could be seen in your familyand your lives.
I love that.
You learned that when we cry outto God, even in our anger, that
He'll respond and guide us aswe face difficult things in life
.
And you know that when we hearfrom God that we have a call to
action and that we must alsorespond and be willing to be
(35:32):
used for His glory.
You realize that when Caroldied that she is doing way
better than the rest of us andyou view that as God kind of
moving you from that griefexperience to a new place.
Clay, what other lessons haveyou learned having been through
all of this?
Can you share with someonelistening who needs hope right
(35:52):
now?
Clay (35:55):
So the title of the book is God's Plan, our Circus, and,
yeah, it's based on myexperience, but I think it can
apply to so many of us where Godhas plans for our lives, which
is important to remember.
God does have plans for ourlives, but it's not necessarily
what we would have chosen.
Something that I think I tookme a while to realize, and that
(36:19):
is God's a lot smarter than weare and we need to get over it.
And sometimes we don't want toget over it because we like to
think oh hey, I'm smart, I knowthings, I know what I want in my
life and that's what I'm goingto focus on.
And I and we wouldn't say thisnext part out loud, but in the
back of our minds we're thinkingI'm really hoping God wants
(36:40):
that too, you know, and he'sgoing to, he's pulling for me,
so he's going to give me what Iwant.
Not necessarily it may bedifferent, and what happens a
lot is God has a plan for us andour job is to get on board with
his plan, not for him to get onboard with our plan, and that I
realized that that manifesteditself several times throughout
(37:05):
my life.
That's why I say that I've beenblessed to have quite a few
challenges.
I view a blessing as anythingGod is engaged with.
A lot of people view blessingsas all the happy stuff and happy
pot.
Oh, I've been blessed and allhappy, positive things.
Well, maybe that's true, butsometimes God blesses us with
(37:25):
things we wouldn't ask for,because he has a big picture
much larger than ours, and Ithink the whole basis of faith
is recognizing that that is infact, the case.
We all have experiences andchallenges.
That's absolute goodness truth.
But it's all in how you chooseto look at it, and happiness is
a choice.
That's really how I've kind ofhandled all the various
(37:47):
challenges that I've had.
It was my choice.
Here's a given Stuff happens,crap happens in life, things
that we don't ask for, that aresad and upset, from diagnoses to
people passing to you name it.
Stuff happens.
We cannot control that at all.
(38:09):
The one thing we can control ishow we respond to it.
That fact, that's the onlything we can control, is how we
respond to it.
So we talk about grief.
It is our choice.
It was my choice to sit around,be depressed and live in the
(38:29):
past and do what was me and mylife sucks and all that kind of
stuff or not?
Now, is it easier to say thanto do?
To flip that switch Absolutely?
Of course it is, but it iswithin our control.
Michelle (38:46):
Yeah, I love those lessons, Clay, and it's so true
that we tend to think that we'reblessed when the good stuff
comes, when in reality, as weboth know now in hindsight, some
of the best blessings can comefrom hard stuff that happens in
our lives.
Not that the hard stuff is good, but that the lessons we learn
(39:07):
can only come through walkingthrough the valley, and that the
deepest and most profoundlessons can be learned no other
way.
Well, Clay, I just want tothank you so much for agreeing
to come on the show today.
You were such a hugeinspiration to me and, I hope,
to others.
I really appreciate you.
Clay (39:25):
Thank you Michelle.
I really appreciate you as well.
Thank you for having me.
Michelle (39:30):
Of course.
So for those of you listening,you might hear Clay's response
to great loss and think - what?
How is it possible to go fromgreat sorrow to having peace and
joy in our circumstances?
You might feel like I did rightafter your loss and think
there's no way I can do this.
For years, it hurts too bad.
(39:51):
Today you might feel likecurling up in a ball and
checking out today, especiallynow in the midst of the holiday
season.
But it's good to know thatothers have been through really
difficult things and survived,isn't it?
It helps to understand thatthere's a bigger plan at work in
our lives and that we need toget on board with God's plan,
(40:13):
not the other way around.
Grief is normal and natural andit's the price we pay for love.
It's not going to end one dayor completely go away, but
happiness is a choice, and whenClay realized he had many years
of life still ahead of him, heactually got excited about what
(40:35):
he might do with it and how hemight use his pain for greater
purpose.
So when you're ready, you'll dothat too, my friend.
But for now, take it slow andbreathe.
Surround yourself with peopleand things you love and seek the
support you need, and then oneday, you'll be able to help
(40:58):
someone else with the lessonsyou learned and your laws.
Thanks for listening.
Well, hey everybody, and welcome back to Qualified,
the place where incrediblepeople share their stories of
overcoming great adversity andloss to inspire you and give you
hope.
I'm Michelle Heaton.
What do you do when your plansdon't work out the way you hoped
?
How do you react when you'retested and tried and you feel
(00:30):
like you're at the end of yourrope?
What would you call a lifefilled with challenges,
including raising twin daughterswith severe intellectual
disabilities and autism and awife who has cancer?
Some might say it's adisappointment or a tragedy, but
my guest today has a refreshingapproach that he chose to take
(00:52):
to the trials he faced in hislife.
In his own witty way, he refersto his life story as a circus.
It's God's plan, but our circus, he says.
He's been an advocate forpeople with disabilities and
served on a host of health andeducation advisory committees,
including board president forthe Ark of Dallas and the Ark of
(01:14):
Texas.
In 2011, he was appointed byPresident Barack Obama to the
president's committee for peoplewith intellectual disabilities
in Washington DC and in 2013, hewas appointed founding chairman
for Texas Health and HumanServices IDD System Redesign
Advisory Committee, which heheld for six years.
He's also an author, havingpublished his first book this
(01:37):
year entitled God's Plan, ourCircus a Family Odyssey through
Autism, death and Reinvention.
His name is Clay Boatwright andit's my pleasure to have him as
my guest on the show today.
Welcome to Qualified
Clay (01:51):
Thank you, Michelle.
I'm delighted to be here.
Thank you for having me.
Michelle (01:54):
Yeah, of course.
Well, Clay, I read your bookand I was really inspired by it.
You and your wife Carol facedmany challenges over the years,
and you talk about how you choseto react to everything that
life threw at you, and you chosehappiness and to appreciate
people and all that you've beengiven in life.
But let's get to the circuspart.
(02:17):
You refer to your life and thebook as a circus, and your sense
of humor just kept me smilingthroughout the book, which was
great.
So can you start off by givingus a little bit of background
about your early life raisingthree daughters, two with
disabilities, and the challengesthat you and your wife Carol
faced on a daily basis?
Clay (02:38):
Sure, absolutely so.
Carol and I were both born andraised in Memphis, tennessee,
met when I had just gotten outof grad school.
She was finishing up herundergrad, I was 21.
She was 20.
And so we met, dated for aboutthree years when we got married.
Career took us to St Louis andin St Louis a year after we got
(02:58):
married, so I guess I was 25,she was 24, we had our first
major adulting experience and wemoved to town.
She went to a doctor, which isnormal when you move to a new
town.
He checked her out.
Everything seemed okay and heasked anything unusual going on.
She said, well, not really, butI got this little bump on my
neck.
So he said, hmm, well, youdon't need a bump on your neck,
(03:21):
let's remove it and test it andsee what it is.
Probably nothing.
Turns out she had Hodgkin'sdisease and Hodgkin's disease is
a form of lymph node cancer.
So that was our firstintroduction into what I call
the world of adulting.
So she went through six monthsof chemotherapy, chemotherapy
and gratefully I got throughthat.
Well, you know, lost her hair,did the whole routine, but
(03:41):
became through it.
Well, doctors suggested we waita few years before having kids
and we're like, okay, that'sfine, we were planning anyway.
So in that course of time wemoved from St Louis down to
Houston and then ultimately toDallas and so we had our first
child, blair, when we'd beenmarried about eight and a half
years.
So Blair was the epitome of theperfect baby.
(04:03):
I mean happy all the time,smiled nonstop, hardly ever
cried, absolutely.
It was just delightful.
And Caroline and I were baskingin that, but also realizing
that you know what lightningdoesn't strike the same crib
twice.
So the odds of this happeningagain are low.
So we went booked.
(04:23):
About three years later, afterBlair was born, we decided to
try again.
We only wanted to have twochildren.
Total got in his sense of humor, had a better idea and gave us
identical twins.
So that took us from playingtwo on one to his own defense
pretty quickly.
Michelle (04:40):
So that's a lot going on.
Already.
Carol undergoes cancertreatment early in your marriage
.
You take that on together.
She gets a clean bill of health.
Then you have your firstdaughter, Blair she's now three.
And then you get the news aboutthe twins and you're preparing
for that zone defense.
But you told me that Carol'spregnancy seemed way different
this time and that she waspretty sick and had to be
(05:04):
hospitalized.
And then the babies ended upcoming seven weeks early and had
to be in the NICU for a while.
But that was just the beginningof some of the challenges.
Talk about what happened next.
Clay (05:15):
We brought him home.
Carol had breastfed Blair for ayear Thought it was great, the
twins about the third day home.
It wasn't working.
So, again, everything wasunusual.
So, moving forward, I use theexample we went from a two on
one defense to a zone defenseand the house management thing,
(05:36):
which is true for many familieswho have twins.
You understand the chaos oftrying to keep up with it.
So again, unlike their bigsister, they cried almost
constantly and it wasn't one ofthose where they would take
breaks in terms of being upset,but they never timed it together
.
So it was never like they wereboth crying at the same time and
(06:00):
then they were both quiet atthe same time.
It was like it was one or theother which meant you never had
a break.
There was never a time to calmdown.
So that went on for a while.
And then at the 24 months wellbaby visit, we go to our
pediatrician and you go to thosewell baby visits when they're
(06:21):
young and they have thesemilestone checklist that you go
through to using X number ofwords or they crawling or they
doing whatever, and gives us thelist of like 25 questions.
I'm holding I think Paige andCarol is holding Mia we go
through the checklist for ourindividual baby we're holding in
, we get to the bottom and welook at each other and we
(06:44):
realize something.
Something was up.
So one of us had checkedanything off the list, right,
which is why they have the list.
Yeah, well, that's probably notgood.
So pediatrician came in andsaid yes, something's up.
And he sent us two Eastersealswho did some assessments and
came back initially with adiagnosis of what we now call
(07:07):
intellectual disabilities andthen autism was added a couple
years later and we didn't knowat the time, but as time went on
we discovered that theirdisability was very much on the
severe end.
So the best way to describe itis that Paige and Mia are now 23
.
They are nonverbal so they'venever spoken in the disability
world.
(07:27):
They need assistance with allactivities of daily living.
ADL is what it's called.
So they need help witheverything bathroom related.
They need help getting dressed,undressed, they can feed
themselves, which is good, andthey are mobile.
I used to laugh that the greatthing is they're mobile.
The challenge is they're mobile, so they think there was a
(07:48):
point where we call it elopement, where they would just
kind of take off.
But they've gotten that out oftheir systems now.
Michelle (07:56):
Yeah, that sounds like you really had your hands full
at that point.
You now have the girlsdiagnosis severe intellectual
disability and autism.
You have a lot to learn abouthow to care for them and how
your life will change goingforward.
But before we get into allthose details, I want to talk
about you and more specificallyyour name, because there's a
(08:18):
place in your book where yourefer to the conversation you
have with your mother about yourname and why she chose the name
Clay.
Tell us about that conversationand the significance it would
have later in your life.
Clay (08:31):
So I was probably five years old, plus or minus a year,
and I clearly remember we werein our kitchen growing up and
for some reason I asked mymother where my name came from.
So my name is Clay, it's notshort for Clayton, it is just
Clay and I asked her you know,clay is not a family name, so
grandfather or uncle Clay oranything like that where to come
(08:54):
from.
And I clearly remember hertelling me that when they were
wheeling her into the deliveryroom for me to be born, she
thought about a Bible verse andit was the verse in the Bible
where Jesus sped in the dirt,formed the clay from the sped
and put it on my eyes of theblind man.
(09:15):
And she was thinking that whenthey were wheeling her in.
So thinking about him formingthe clay.
That's why she then told my dadwhat would have happened.
They decided to name me Clay,coming from that.
So five or six years old, I'mlike, oh, that's kind of
interesting, I've named aftersomething about Jesus and I
would even go in the back of mymemory.
(09:35):
You know I would remember thatas time went on.
I didn't put a lot of thoughtinto it, but something to think
about that's every couple ofyears and crossed my mind.
So move the calendar aheadabout 35, 40 years and in Paige
and Mia we've got the BoatwrightCircus in full speed, Paige and
(09:55):
Mia with their disabilities,and I was starting to get more,
a little bit more into thedisability community and trying
to understand it a little bitbetter.
And one day we, for a shortperiod of time, we were
attending church here in theDallas area and Chuck Swindoll
it's Stoneborough CommunityChurch.
Chuck Swindoll, fairlywell-known pastor and author, is
(10:17):
the pastor, he's the seniorpastor at Stoneborough.
So we were going there and oneSunday we were listening to
Chuck Sermon and he's the titleof the sermon is when your Gift
Comes, specially Wrapped and itwas about children with
disabilities because he has ason with a grandson, rather a
grandson with autism.
So I'm taking close notes.
And he gets to a certain verse,a Bible verse, one of the Bible
(10:41):
verses he was using, and it'sJohn 9, 1 through 3.
And John 9, 1 through 3 goesthis way as he, meaning Jesus,
came along, he came across a manwho was blind from birth.
The disciples asked him, rabbi,who sinned this man or his
parents, that he was born blind?
(11:01):
Well, neither this man nor hisparents sinned, said Jesus.
This happened so that the powerof God could be seen in his life
, and I listened to that verseand it resonated pretty deeply
on several different levels.
So, to break it down, the firstpart was this happened, so this
(11:23):
happened means there's purpose.
This happened, so there's aparticular purpose.
What was that purpose?
So that the power of God couldbe seen in his life.
Also important to note that itwas not in response to, it was
not a punishment.
It was not a punishment for theman, it was not a punishment
for his parents.
This happened for a purpose andthat purpose was so that the
power of God could be seen inhis life, and it just resonated
(11:47):
as the father of two childrenwith pretty severe disabilities.
That resonated pretty deep.
Okay, caroline, are not beingpunished for some past sin, and
that God can be reflected in anyof us, including a page in me
which most people wouldn'tactually think.
Michelle (12:03):
Well, that's huge.
You had the realization thatyour circumstances were not in
any way a punishment.
Number one, and then number two, that God can be reflected or
used in any of our lives.
That's amazing, Because I thinkit's natural to wonder about
things like did I bring thisabout?
Is this some kind of punishmentfor something I did?
(12:24):
So then you started to connectthe dots about that scripture,
your name and your purpose.
Talk about how all thathappened.
Clay (12:33):
One afternoon I'm at home and I decide okay, I really like
this Bible verse, I want tomake sure that I'm quoting it
exactly.
So I go into my home office andI've got several different
versions of the Bible that I'vecollected over time, and
normally I read the NIV version,but for some unknown reason
well unknown, maybe a very knownreason, as I was soon to find
(12:56):
out I just have to grab the copyoff the shelf, which was the
revised standard, which,interestingly enough, was the
version my mom used to read.
So I pulled the revisedstandard off and opened John 9.
One, two, three I'm readingthrough, got it and after I
finished verse three, my eyesglanced down to verse six and
when they did, the breathliterally left my body.
(13:19):
I was like I almost felt myselfgasping for air.
I could feel the hair on theback of my neck pristled up.
You know, it was like you getthat shiver, that kind of runs
down your entire body.
Because verse six is the versewhere it's where Jesus bent down
, spit in the dirt and formedthe clay.
(13:42):
The reason it registered withme is I've probably read verse
six dozen times over the yearsis in most versions that is read
as formed the mud.
Okay, and revised standard,it's worded as formed the clay.
And when I realized that it allcame back from the conversation
with my mom, from 40, you know,30, whatever years ago comes
(14:05):
flooding back and I realizedthis is a big deal because this
verse, which is now resonatingso deeply with me, ties back to
something that happened to mymom, which even was being
wheeled into the delivery roomand actually was significant
enough to form my name.
And that's when it kind ofregistered with me that this
whole there's something going on, you know.
(14:25):
And uh, I was like I'm going tobe, like I'm going to be like
I'm going to be like.
I wasn't sure at that time whatthat was, but it would soon
become a little bit more clearwhat my purpose was.
I would have a God experiencenot long after that.
That provided clarity.
That fits with us, the wholenaming thing.
Michelle (14:43):
Yeah, that's a big deal.
I love how God sort of revealedthat to you and how you're now
starting to see the biggerpicture about the purpose and
plans that were all unfolding inyour life.
So you referred to another Godexperience that really served as
a launching pad for the newdirection you had taken life.
Tell us about that.
Clay (15:04):
So it was a Friday night and Paige and Mia were having a
rough night, so they were havingsome major behavior issues,
meltdowns, kind of crying, andso suddenly Blair was upset
because her sisters were upset.
Uh, carol, my wife, she waskind of at her wit's end into
the week end of the day she was,she was done, she was pretty
fried.
So I did what any good fatherhusband household, the leader of
(15:29):
the family, would do Right, Iwent to bed, you know.
You know, this is what it is.
Everybody's safe.
They will eventually crythemselves asleep and it'll be
fine.
Now just go to bed, figure itout tomorrow.
So I go to bed and I'm layingthere and I'll be honest with
you, I was mad at God.
I really was.
(15:50):
It's like in page and me areabout four or five years old at
that time and I'm mad at God andI'm sitting there thinking God,
I did not sign up for this.
Okay, I am sales and marketingguy, kind of focused on my
career and trying to do the bestI can by the family, but this
was not kind of on my agenda.
So I'm thinking God, why didyou do this?
(16:11):
Why did you do this to Paigeand Mia and, to be blunt, why
did you do this to me?
And that's what was on my mindwhen I fell asleep was God, why
did you do this?
Now, I don't usually go to sleepmad.
When a few times I do, it'salmost like I wake up the next
(16:33):
morning, matter than the nightbefore.
It's almost like the emotionsmarinade a little bit overnight.
But that next Saturday morningI woke up totally different
feeling.
I woke up excited, energized,had fresh air in my lungs, I was
ready to go and seize the worldand the very first words that
entered my head were to helppeople like Paige and Mia, which
(16:57):
I immediately interpreted as tohelp people with severe
disabilities like they have Now.
I mentioned to have sales andmarketing guy doing the career
thing.
Raising the family was notinvolved in nonprofits, was not
involved in really any majorservice activities whatsoever.
As sure as you and I are havingthis conversation, there is no
(17:17):
doubt in my mind.
I fell asleep asking God aquestion and he sent the Holy
Spirit and answered it.
I asked God why did you do this?
And he sent the Holy Spirit andanswered it with to help people
with severe disabilities, likemy children did.
I believe it had to come fromGod, because there's no way I
would have cooked that answer upon my own.
That's right.
(17:39):
That's right.
Michelle (17:40):
o reason I would have.
Clay (17:41):
hat's how you know.
So I am like well, two greatthings happened at that moment.
Number one was it happened.
Number two was I had thewherewithal to realize it had.
So I'm sitting there andthinking, wow, this is a big
deal, so action must be taken.
What do I do?
So I Googled it, of course, ofcourse.
(18:05):
So I go to the family computerthis is 2004, 2005 and I typed
four words and I'm going to askfor forgiveness.
The lingo has changed over time, so I'm going to use page and
me as original diagnosis, whichhas since been improved to
intellectual disabilities.
But I type four words.
The four words were mentalretardation, which was their
(18:25):
original diagnosis.
Dallas, where we live.
Help, okay, god said help people, help people like Paige and Mia
.
That's what I type, hit enterand first thing that came up was
an organization I had neverheard of before called the Ark
of Dallas, and I'm to find outthe Ark system in the United
States is the nation's oldestsystem of nonprofits helping
(18:48):
people with intellectual anddevelopmental disabilities.
Yeah, so I'm looking throughthat.
I'm like, well, this looks likean organization that helps
people like page and me.
So I'm going to compress thenext 15 years into 90 seconds.
So I read their website onMonday morning, reached out to
introduce myself.
Turns out they were looking forboard members.
(19:09):
Within two weeks I'm on theirboard.
It was a board of anorganization I'd never heard of
before.
Within a few years became theirboard president.
So I'm in that process.
I'm meeting people, I'm meetingfamilies, I'm getting to know
the issues people face, got ontothe board and became the board
president of the stateorganization down in Austin.
So in that situation,continuing to meet people.
(19:32):
But I'm also meetinglegislators and I'm meeting
health and human service people,the bureaucracy, the agencies,
and understanding variousprograms and support programs.
And as I'm learning this, I'msharing this back with the other
people that I've met.
You mentioned that I gotappointed to an advisory
committee in Washington byPresident Obama, so I was again
(19:52):
able to continue the learningand the sharing back there and
all along the way I'm able tohelp in an advocacy way,
influence the system for thebetterment of people with
disabilities, but in an alsomore practical way, take the
learnings that I'm getting andsharing them back with all the
various people that I've met.
And so in the course of reallya fairly few years yeah, I'm
(20:17):
doing stuff in Washington, doingsome leadership positions down
in Austin and so on.
All comes from me going to bedmad at God on a Friday night and
that's not exactly.
It's a straight, very shortbridge that went from one to the
other, but anyway.
So that's the first pivotaltestimony, god testimony that
(20:37):
was very influential in theimpact of my life and on my
family.
Michelle (20:41):
Yeah Well, that story is incredible and I love the
fact that you reached out andsought God and so quickly you
heard the answer and then soquickly the wheels were in
motion.
So it was certainly Godordained and confirmed.
As you went through it and soso many years you were living in
the home with these girls,there was a lot of you know
(21:03):
frankly chaos and trials andchallenges, and then you became
an advocate for this personswith disability community Plus
you were working full time andthen you get some news about
Carol and her health again.
Tell us about all that.
Clay (21:19):
So Paige and Mia stayed at home and went all through
school and most of high schoolBlair went off to college.
Paige and Mia there are a fewmore years and even though we
had help at home, by that pointit was pretty tough and, to be
candid, we just ran out of gas,totally ran out of gas.
But because I know the systemand had lots of friends, I
(21:42):
thought it would be fairly easyfor us to find like a group home
set, which is what we'denvisioned Paige and Mia moving
into at some point, even thoughI know everybody in the
disability community in Dallas.
It took a year and a half tofind somebody who would be
willing to work with Paige andMia because of the severity of
their disability.
So finally got led to an agency, a couple who were willing to
(22:04):
work with us, and we got Paigeand Mia placed in a group home
just a few miles from our house.
So we were able to go over asmuch as we wanted and still be
engaged as a family as well aswe could, even though we're not
under the same roof.
So Paige and Mia moving totheir group home.
That was January 2017.
(22:28):
And a couple of months later,carol decides that she's ready
to go back to work.
So she went to work for someonewho we had known over time and
was in her job, getting used tothe modern work experience.
And then six months later shewasn't feeling good at work.
One day, went to the doctor andfound out that she had ovarian
(22:49):
cancer.
So she got that diagnosis sixmonths after everybody moved out
, went through surgery and Ithought they got it all.
Missed check six months afterthe surgery clean bill of health
.
We're thinking, hey, this isgood.
Six months after that she hadanother experience at work of
not feeling well and found outthat it had come back and she,
(23:11):
in the course of six months, itwent from not being visible to a
five pound tumor.
In the course of six months,went through 18 months of chemo,
five different chemoarrangements none of none of
them took and she ultimatelypassed away.
Michelle (23:25):
I'm so sorry, Clay.
Thank you.
Clay (23:27):
Yeah, it was a.
It was a, it was a challenge.
It's funny we look.
I look back at it at hindsightand I'm grateful that we had the
group home set up for Paige andMia at that point, because at
Paige and Mia been at home whileCarol was going through chemo.
I'm sure we would have figuredsomething out, but it was just
(23:49):
easier on everybody to not haveto deal with that.
Michelle (23:53):
One more challenge.
Clay (23:54):
Exactly so, Paige and Mia, they were in a good setup.
Meanwhile, Carol wasn't havingto have that complication while
trying to go through chemo orsomething.
Michelle (24:03):
Yeah, so here you are now at this new place in life.
Paige and Mia are receivinggreat care and located very
close to your home, which isgreat.
Blair's an adult and doing wellin her career, and you and
Carol would have been emptynesters, in a sense, and a new
chapter would have begun.
I can imagine that really pullsa rug out from underneath you.
(24:26):
How did you respond at thatpoint to such a devastating blow
?
Clay (24:32):
When we got the news it was surprising, but my view was
well, for some unknown reason,god likes giving us challenges
to deal with.
That did not say everybody elsegets to deal with, and we've
done a pretty good job thus farof dealing with them.
So let's do it, let's knock itout.
(24:53):
Let's just face it yeah we'rejust going to do it and do work
the regimens.
And we just started plowingthrough it and it was
disappointing.
Every time we would go througha chemo regimen and some months
later he'd come back up.
It's not working, so let's trya new one.
And then no one.
So it's this process ofelimination.
So that that was a beatingafter a while, and certainly
(25:17):
more for Carol than it was forme.
But again I maintain theattitude of well, we keep
working it until it's gone.
Yeah, but the real severity ofthe diagnosis really didn't hit
me until you guess, it wasJanuary 4th 2020.
20, you remember the big day Isaved about?
(25:37):
It was January 4th 2020.
We go go to the doctor andCarol's actually feeling pretty
good.
So some tests she had rightbefore the holidays seem to come
back pretty good.
Some metrics were looking solid.
And we go to go to the doctorand we're sitting there in the
exam room and he comes in withhis chief nurse, doesn't say
(26:01):
hello, doesn't say hi, how areyou?
Nothing.
He comes in, sits down, looksCarol's, we're in the face and
said sweetheart, I'm sorry butwe're still seeing disease
progression and there's nothingelse we can do.
Oh, that's tough.
Talked about the air leaving theroom.
Yeah, and I'm sitting therehearing this and it took me a
(26:26):
minute to register.
I'm like okay.
He says there's nothing elsethat we can do.
So what was the first thing Iasked was oh, so what do we do?
Right?
And I mean it's like okay.
And then he kind of looked atme like I had three heads and
I'm like what, huh?
And I realized at that timethis is one where this may not
(26:51):
work out well.
So I had known that and had itin the back of my head, but you
don't think about it.
And now I have to think aboutit.
Michelle (26:59):
Yeah, clay, that must have been so difficult for the
both of you receiving that newsand then having to process that
information mentally andemotionally.
I know you've already beenthrough so much in your lives
and you guys have trulyweathered the storms together,
but now this news would reallytake you and your faith to a new
level.
And so I recall in the bookthere's a chapter called From my
(27:23):
Side to Christ Side, and in ityou describe Carol's final
moments in life, and it wasreally a tough read because you
were describing the way you saygoodbye to her and you talk
about how, after that, onlythree days later, you had
another revelation you felt wasfrom God.
That would change the way thatyou would view her passing and
(27:46):
your grieving process, and I'dlove for you to talk about that.
Clay (27:50):
So, as I mentioned, carol died on February 11, 2020.
So three days later, of course,is Valentine's Day, february 14
.
Blair had come back to Dallasfrom Nashville where she was
working for her mom's servicesand so on, and she and her
boyfriend at the time nowhusband wanted to go out for
(28:12):
Valentine's Day.
So they went out forValentine's Day, go ahead, they
go out.
And that night I'm hungry,looking for something for dinner
.
So I go into a grocery storenear our house, as I had a
million times and I walk inthere and you know, I'll be
honest with you I'm pretty down,sad and depressed.
(28:32):
Again, I'm kind of a positiveguy, but like anyone, I get down
.
I'm thinking, okay, well, thissucks, it's Valentine's Day.
It's the first Valentine's Daythat Carol and I had not been
together in 33 years, includingthe dating period.
Carol was not only my bestfriend, but arguably my only
(28:54):
friend, to be totally candid.
She's now gone.
Talked about loneliness, it wasstark.
And again, the holiday,valentine's experience.
I'm just feeling down anddepressed and I'm walking
through the store doing this.
What was me?
Life sucks, god.
Why do you keep doing thesethings to us?
(29:15):
And I get to aisle nine, thehaircare aisle.
Why?
Haircare aisle, I don't know,it may not be relevant, that's
where it happened.
And aisle nine in an instanteverything changed.
It's kind of like that Saturdaymorning I talked about a moment
ago with me.
In an instant I went from beingsad and down-trodden, depressed
(29:36):
, suddenly upbeat, enthusiastic,a smile probably came on my
face and at that moment, Ibelieve, god revealed two things
to me with absolute clarity.
I know where my brain went, soI know that I thought the two
things.
So they had to come again.
They had to come from God,because why would I have?
(29:56):
I would not have cut these upon my own, given my mental state
of that moment.
So God revealed two things tome with absolute clarity.
Number one was Carol's doinggreat.
She's doing a lot better thanthe rest of us.
Yeah, she was a very strongbeliever in Christ and, as a
result, she was experiencingwhat all we Christians aspire
(30:19):
for, and that is to spendeternity with God.
She's not in pain, she's notworried about the chaos of
craziness going on in this world.
She is doing great.
So that was the first place.
Was Carol's doing great?
I could take satisfaction inthat Relief in that.
So that was number one.
Number two how to do with me.
(30:39):
So I was 55 years old at thetime and I'm 58 now.
So I was 55.
I had been married for 30 years.
So doing some basic math, godwilling and I mean that
literally I may still haveanother 30 ahead of me.
So in terms of this wholeadulting thing, I'm only halfway
(31:03):
done.
For the first time in my life, Ihad virtually no obligations
and responsibilities.
Blair was out of college,working in a full time job,
doing great her career, got agroup home set up for Paige and
Mia.
I'm Carol and I were theirguardians, but we weren't having
to do the day to day heavylifting anymore, which was a big
(31:25):
deal, and we've got the systemset up to kind of take care of
their needs.
Carol is now doing better thanall of us and hanging out with
God, so I can quite literally dowhatever I want.
And I thought well, thatdoesn't happen very often.
(31:46):
So the million-dollar questionwas okay, God, you've put me in
this position, what do you wantme to do with it?
And that was three and a halfyears ago.
I think the answer to thatquestion is still being written.
I think the book is part ofthat.
(32:06):
To be honest with you MichelleI think you and I having this
conversation may be part of thatStill to be determined on those
things but the realization thatCarol's doing great and that I
have opportunity that I wouldnot have had otherwise, that God
can use in some way, there's acertain level of excitement and
(32:30):
anticipation attached to that,the unknown of okay, I don't
know what this is going to be,but we're going to give it a
shot.
There's an example I've used.
I don't know who quoted itfirst.
Several pastors have beengiving credit for this, but it's
a nice perspective and that is.
There's a reason that ourwindshield is huge and our
(32:53):
rear-view mirror is small isbecause what's in front of us is
significantly more importantthan what's behind us.
When I first heard that, itresonated deeply because it is
so true, it is absolutely trueand this was really important
for me with dealing with Paigeand Mia and helping raise them
(33:13):
is I never got caught up in, oh,what caused their disability or
what caused their autism or,aside from me, that Friday night
experience of going to bed madat God, never really got caught
up in the why why why even withCarol and then with Carol's
challenges and cancer and so on.
I never spent time on that.
I always was focused on what dowe do?
(33:34):
What's the solution?
What's the best course ofaction?
Okay, can't solve, there is nocure for Paige and Mia's
disability Okay, well, what'sthe best course of action to
give them the highest quality oflife possible?
So that was always been myattitude.
And with Carol's passing, thesame thing applied there and God
basically said don't feel badfor Carol.
(33:54):
So, okay, what's the point offeeling bad for myself?
And that's kind of been mynatural attitude all along.
Michelle (34:03):
You know, I've talked to a lot of people in the wake
of great losses and the commontheme seems to be that it takes
time, that the pain nevercompletely goes away, but that
in time it lessens and softensand becomes more bearable.
But I really want to take thisopportunity to talk with you
because of the way that Godtruly showed you in a very short
(34:26):
span of time, when it takes alot of us years to get our
brains around, that our lovedones, who are believers, are
really doing great and thatwhile grieving and mourning our
natural and normal reactions totheir loss, we can find great
satisfaction and relief inknowing that they're doing way
better than they've ever been,and we can actually find joy in
(34:48):
that and then eventually purposein our circumstances, like you
have.
Well, thanks for sharing that,and I love all the great points
you made and the lessons youlearned, because they're very
good.
You told us that early on youlearned that your circumstances
were not given to you as apunishment or that they happened
as a result of something youdid, but so that the power of
(35:11):
God could be seen in your familyand your lives.
I love that.
You learned that when we cry outto God, even in our anger, that
He'll respond and guide us aswe face difficult things in life
.
And you know that when we hearfrom God that we have a call to
action and that we must alsorespond and be willing to be
(35:32):
used for His glory.
You realize that when Caroldied that she is doing way
better than the rest of us andyou view that as God kind of
moving you from that griefexperience to a new place.
Clay, what other lessons haveyou learned having been through
all of this?
Can you share with someonelistening who needs hope right
(35:52):
now?
Clay (35:55):
So the title of the book is God's Plan, our Circus, and,
yeah, it's based on myexperience, but I think it can
apply to so many of us where Godhas plans for our lives, which
is important to remember.
God does have plans for ourlives, but it's not necessarily
what we would have chosen.
Something that I think I tookme a while to realize, and that
(36:19):
is God's a lot smarter than weare and we need to get over it.
And sometimes we don't want toget over it because we like to
think oh hey, I'm smart, I knowthings, I know what I want in my
life and that's what I'm goingto focus on.
And I and we wouldn't say thisnext part out loud, but in the
back of our minds we're thinkingI'm really hoping God wants
(36:40):
that too, you know, and he'sgoing to, he's pulling for me,
so he's going to give me what Iwant.
Not necessarily it may bedifferent, and what happens a
lot is God has a plan for us andour job is to get on board with
his plan, not for him to get onboard with our plan, and that I
realized that that manifesteditself several times throughout
(37:05):
my life.
That's why I say that I've beenblessed to have quite a few
challenges.
I view a blessing as anythingGod is engaged with.
A lot of people view blessingsas all the happy stuff and happy
pot.
Oh, I've been blessed and allhappy, positive things.
Well, maybe that's true, butsometimes God blesses us with
(37:25):
things we wouldn't ask for,because he has a big picture
much larger than ours, and Ithink the whole basis of faith
is recognizing that that is infact, the case.
We all have experiences andchallenges.
That's absolute goodness truth.
But it's all in how you chooseto look at it, and happiness is
a choice.
That's really how I've kind ofhandled all the various
(37:47):
challenges that I've had.
It was my choice.
Here's a given Stuff happens,crap happens in life, things
that we don't ask for, that aresad and upset, from diagnoses to
people passing to you name it.
Stuff happens.
We cannot control that at all.
(38:09):
The one thing we can control ishow we respond to it.
That fact, that's the onlything we can control, is how we
respond to it.
So we talk about grief.
It is our choice.
It was my choice to sit around,be depressed and live in the
(38:29):
past and do what was me and mylife sucks and all that kind of
stuff or not?
Now, is it easier to say thanto do?
To flip that switch Absolutely?
Of course it is, but it iswithin our control.
Michelle (38:46):
Yeah, I love those lessons, Clay, and it's so true
that we tend to think that we'reblessed when the good stuff
comes, when in reality, as weboth know now in hindsight, some
of the best blessings can comefrom hard stuff that happens in
our lives.
Not that the hard stuff is good, but that the lessons we learn
(39:07):
can only come through walkingthrough the valley, and that the
deepest and most profoundlessons can be learned no other
way.
Well, Clay, I just want tothank you so much for agreeing
to come on the show today.
You were such a hugeinspiration to me and, I hope,
to others.
I really appreciate you.
Clay (39:25):
Thank you Michelle.
I really appreciate you as well.
Thank you for having me.
Michelle (39:30):
Of course.
So for those of you listening,you might hear Clay's response
to great loss and think - what?
How is it possible to go fromgreat sorrow to having peace and
joy in our circumstances?
You might feel like I did rightafter your loss and think
there's no way I can do this.
For years, it hurts too bad.
(39:51):
Today you might feel likecurling up in a ball and
checking out today, especiallynow in the midst of the holiday
season.
But it's good to know thatothers have been through really
difficult things and survived,isn't it?
It helps to understand thatthere's a bigger plan at work in
our lives and that we need toget on board with God's plan,
(40:13):
not the other way around.
Grief is normal and natural andit's the price we pay for love.
It's not going to end one dayor completely go away, but
happiness is a choice, and whenClay realized he had many years
of life still ahead of him, heactually got excited about what
(40:35):
he might do with it and how hemight use his pain for greater
purpose.
So when you're ready, you'll dothat too, my friend.
But for now, take it slow andbreathe.
Surround yourself with peopleand things you love and seek the
support you need, and then oneday, you'll be able to help
(40:58):
someone else with the lessonsyou learned and your laws.
Thanks for listening.
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