October 28, 2025 • 60 mins
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Dive into Jason Tuttle's powerful story about parenting two medically fragile children and the lessons learned along the way. In this episode, you'll hear firsthand experiences, practical cooking tips, and an honest look at grief and resilience.
- Jason's journey as a father to two children with severe neurological delays and medical needs
- The simple and adaptable Betsy's black bean chili recipe, including ingredient tips and why it's a family favorite
- Managing mental health as a parent facing ongoing crisis, including grief, anger, and the realities of self-care
- How Jason and his family coped with unexpected loss and the emotional aftermath
- The creation and mission behind "Letters to Zachary"—a grief resource platform for families navigating similar challenges
Don't forget to check the show notes for resources and ways to connect with Jason.
From Jason:
I am a married father of two kids with multiple mental and physical disabilities (some rare). I was a Stay-at-Home Dad for 12 years until my son suddenly and unexpectedly passed away from issues related to his needs on 01/28/22. Since the day my son passed, I created a website, FB blog, and community (Letters To Zachary) on grief that details my raw, unfiltered and open grief journey from a male's/father's perspective.
Connect:
Facebook:
https://www.facebook.com/profile.php?id=61552174684952
Instagram:
https://www.instagram.com/letters2zachary/
______
Betsy's Black Bean Chili
1 pound ground round
2 (15 ounce) cans no-salt-added black beans
2 (8 ounce) cans no-salt-added tomato sauce
1 (8 ounce) jar salsa, or to taste
1 tablespoon chili seasoning mix
Step 1
Heat a skillet over medium-high heat. Cook and stir beef in the hot skillet until browned and crumbly, 5 to 7 minutes; drain and discard grease.
Step 2
Drain one can of black beans pour into a large pot over medium heat; add second can black beans, tomato sauce, salsa, and chili seasoning mix. Stir cooked ground round into the beans mixture, bring to a simmer, and cook until the flavors blend, 20 to 25 minutes.
******
Host: Reesa Morala, MA, Licensed Marriage and Family Therapist. Reesa is a parenting specialist with a niche in supporting couples. Find Reesa hosting couples and parenting workshops nationwide!
Make sure to like, follow, and subscribe!
For the video version of this episode find us at: https://www.embracerenewaltherapy.com/
If you are a parent ready to share your real-life parenting struggle and dish up a recipe with Reesa, apply here:
https://www.embracerenewaltherapy.com/real-family-eats-guest
If you are experiencing a mental health crisis or need personalized support, please seek help from a licensed mental health professional. If you are in immediate danger or experiencing a crisis, contact emergency services or a crisis hotline in your area.
Suicide and Crisis Line: Text or Call 988
Go to your local hospital or call 911
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
I never in my wildestimagination thought that we
(00:03):
would have to do all themedical stuff and all
the special needs stuff.
Nor did I ever thoughtthat I would, you know,
outlive my son.
Hey, everyone.
Thanks for joining me.
My name is Reesa and I'myour host.
(00:25):
We are talking to real familiesabout real stories.
Here on the real family eatswhere we've got food for thought
and thoughtful food.
So let's eat.
(00:46):
Welcome back everyone.
Thank you so much for tuning in.
I'm so glad that you are here.
I am so very honored,to be having our chat with our
guest today.
I have Jason, who is beenkind enough to join us.
City.
Hi, Jason, thank you so muchfor being a guest here.
Hello, and thank youfor having me on.
Yes, absolutely.
(01:07):
Okay, Jason, for anybody who islistening, who doesn't know who
you are, can you pleaseintroduce yourself for us?
Yes.
My name is Jason Tuttle.
I'm a married father.
21 years this year.
Two medically fragile children.
Within about the firstfive years of my marriage.
I had two kids that wereboth born with severe
(01:30):
neurological delays.
Epilepsy, nonverbal, basic,wheelchair bound.
And then my son was born with arare condition on top
of everything else.
So, we started our, marriagevery quickly, being
introduced into the specialneeds live.
We got, unfortunately,just 15 years of my son.
(01:55):
As of about three years ago,he suddenly and unexpectedly
passed away.
And after a period of grieving,I decided in a way, to create
a legacy for my son to createmy online platform
called Letters to Zachary.
Wow.
And I know you're goingto tell us all about, letters
(02:16):
to Zachary a little bitlater on.
And that's just a sneak preview.
So thank you so much.
For being willing to come inand get so vulnerable and honest
with us because I thinkthat this is, a topic that
our society would probablymuch rather look over.
And when you're going through itas a parent, because it
is things that peopleexperience, it can feel so gosh
(02:38):
darn isolating.
So thank you.
Before we jump into this story.
Tell me what recipeare you sharing with our parents
today and why did you choosethis one?
Well, I mean, because of theaforementioned special
needs life and having that and Ihave a lot of complicated
(02:59):
things in my life that I hadto know typically, when I cook.
I'm a pretty simplistic cook.
Just because it is, at the endof the day, all I want to do
is simple.
And I looked online.
I'm a fan of chili and years agoI was a fan of very spicy
(03:22):
hot chili.
But due to some healthconditions, I've had to
scale back on the spicinessof a lot of things.
And I came across batches.
Black bean chili.
Honestly, I don't remember.
All recipes.com is where Ifound it.
Wonderful.
And, I chose it because, one,it only had about 4 or 5
(03:47):
ingredients.
It wasn't too expensive,and I could kind of cartridge
spiciness based on what Ior my kids wanted.
My son, was definitely like mein the sense that he loves
spicy food, and that'sanother reason why I chose it.
Yeah, I love that.
(04:08):
And I love that you mentionedkind of that simplistic.
I feel like so many parentsthat I've heard of,
I know myself that sometimesyou don't have the
capacity to do, you know, afive course meal.
And so you do need somethingthat's going to be hearty
and just simple that we canthrow together.
Which is why I love this.
We're a big chili fan householdas well.
(04:31):
We haven't quite tried this one.
I feel like everybody hastheir own take on, series,
and so I'm excited to try thisone today.
So, with that in mind,can you tell us give us
the overview of the steps?
And then I'll get cookingwhile we chat.
Okie dokie.
So typically when I cook it,I don't blow it up because I
(04:51):
love chili.
And I'll eat it for days on end.
So, okay, all the thingsthat I'm giving people,
I typically do twice as muchjust because I like to make more
to have for later.
And I mean, I'll eat itcold, hot, you name it.
But the ingredientsare basically, pound of ground
round.
I've used that.
(05:11):
I've used regular hamburger.
I've used several different.
And they're all pretty goodwith it.
Okay.
Two for 15 ounce cans of blackbeans.
It says no salt, but I've doneeither one.
They're both good.
Two cans, eight ounce cans of,no salt, tomato sauce,
(05:32):
a jar of salsa.
I typically do mild in therebecause, if I adjust the
spiciness of it, I do it more inthe powder side of it versus
the salsa side of it.
And then a tablespoon of chiliseasoning.
And basically, the longestpart for me is just browning
(05:52):
the hamburger meat thatI'm using.
And then once I get that done,it's literally you put it in
a big stockpot and you dumpliterally everything in and you
let it simmer for about30 minutes.
About the only thing, that youhave to do outside of
dumping it in is one of the cansof black beans at once.
(06:13):
The liquid in there,and one of it once it drained
out of just so it's not so soupyin the end.
Okay, that makes sense.
Well, I can do that.
And thankfully, I've got myI've got my brown meat already
kind of quick.
So we're just like you said,throw it in and let it simmer.
So I'm excited to do that today.
So while I do that and while Iget going, I would love to
(06:38):
kind of start at the beginning.
I heard you mentioned,and giving this a little bit
of a background for you thatyour introduction in your,
in your spouse's introductioninto parenthood was kind of
really quick in the senseof jumping to from just
difficulty of becoming a parentand that like transition
(06:59):
to kind of expert levelin the sense that you're
now dealing with childrenwith fragile medical needs.
It sounds like.
And so I would love to startif you could share with me
and anyone who's listeningwhat that was like, even
just at the beginning, and kindof getting those diagnoses
(07:19):
as new parents, what that waslike for you folks.
In my blunt version,as I always am, it was like
getting hit by a mack truckwhile you're standing on
the interstate is what it was,at least in the beginning,
specifically for therare condition.
I won't get into a long,drawn out version, but the
(07:40):
the basic story leading upto all that was.
My wife and I got married.
We were, mid to late 20swhen we got married.
We wanted to have, several kidsat that point before we found
out about my son's,all of his issues, and
we had no reason to believethat there were going to be
any issues.
(08:01):
We were perfectly fine upuntil the week 20 appointment,
which is that appointment whereyou find out the sex of
the child.
And we got in there.
And just to tell youthe kind of, regionally,
culturally different viewson things.
My wife, being fromthe northeast and a cradle
Catholic, did not will for anyreason wanted to know the sex of
(08:23):
the child.
It was the last great surprise.
She didn't want to know.
I'm not born and raisedin the South, but I've lived
in the South most of my life.
I wanted to know the sexof the child.
And plus I was doing the nurseryand all that.
And so I kind of want to caterto whatever we were having
at that point.
And we, my family even actuallywas big in the ancestry in that,
(08:48):
my father went backten generations in our family,
and we asked about fivegenerations of my wife's family,
and there were no medicalissues, no, no medical issue
that was in, say, self-induced,like an alcoholism or something
like that in the families. Yeah.
So we get into the week20 appointment and we're
(09:11):
going back and forth and,ultrasound tech goes,
at the point of finding outthe sex of the child, you want
to know.
And my wife and I playfullygo back and forth and before
we can finish, she goes, well,I've found an issue and I need
to know.
So at that point, we got towatch the sex of our child.
This is you having a boy?
(09:31):
Great.
And I looked at her and said,can you tell me what
the issue is?
And she looks at meand she said, well, that's
more of a doctor relayedmessage.
And I said, okay, I understand.
And I said, well, canyou answer this?
Why did you need to know the sexof the child?
And she said, well, if that'swhat I think I'm seeing.
She said, it's rare.
(09:52):
And boys but even rare earthand girls and that's
all we know.
Wow.
The next step was, they referredus to a perinatal allergies,
which is kind of a whole,high risk ObGyn.
And we saw him from week20 to week 38, and we 38
(10:13):
was the week that my wife had aC-section.
You know, we went throughthat process.
He was wrapped up.
We literally thumb saw him30 seconds and then
wished him away to the neck.
You in that hospital?
Well, my wife had to goto recovery.
And then I went up there,and it wasn't until the
moment I walked in that Nikkiwhere he goes, by the way,
(10:35):
your son was born with arare condition called Eagle
Barrett's syndrome.
And at the time he was born,it was 1 in 40,000 births.
Wow.
Oh my goodness.
Okay, so for anybody whodoesn't know what that is,
can you maybe just give us,a little bit of a summary of
what is that what are someof the symptoms?
(10:57):
So it's a rare condition becausethey know characteristics
about it, but they don't knowthe official start point to it.
They know it's a GI issue.
They know it's, there'skidney issues, which meaning
my son was only born with onekidney.
The one kidney he did havedid sustain some damage
in utero.
And so what that meant waswhen he was born, the more
(11:19):
he got to an adult, did he haveenough good kidney to sustain
normal function? Yeah.
There's kidney issues there.
He was born with an abnormallylarge bladder that needed to be
given a catheter everyfour hours.
At least the first five years ofhis life.
That's a part of eagle, eaglebear syndrome.
(11:41):
And so basically, what it meantwas where you and I get
that sensation that we'vegot to go.
He didn't necessarily get that.
And what that also meant was,if I didn't care for them,
he was susceptible to urinarytract infections.
And for those that don't know,the reason why you get those
infections is because there'ssediment in that fluid, and it's
(12:03):
that sediment.
The irritates and causingcauses.
The infection.
And so that's why you haveto, void or drain your bladder
to get it out so it doesn'thappen.
It's kidney issues,an abnormally large bladder
that has to be, drained.
The main reason why it'scalled, eagle bearer syndrome,
(12:25):
and it's also moreaffectionately known as prune
belly, is because my son was notwas born without any core
dominant muscle.
He had none.
So, like, I could lay himon the floor.
And the only thing betweenhis organs and the outside world
was the skin in the fashionthat hold the skin together.
(12:45):
So I could literally lay himon the floor.
And from the outside I couldtouch his small intestine.
His large intestine ishis bladder, his stomach is.
And he literally was like one ofthose plastic like biology
dummies.
You see in high schoolthat since I could
literally touch all thatand that section from
the outside.
And so that is all eaglebear syndrome.
(13:10):
But one of the reasons why hewas medically fragile is because
the secondary issue of that wasbecause he didn't have that core
muscle there, whereas you andI can when we get a pneumonia
or flu, we can coughthe crud out.
And the reason why is becausewe have that muscle there.
We can create pressureon that muscle, muscle like
(13:31):
a foundation.
And it's it pushes all of thatmuscle to force it out.
Or because he didn't have thatmuscle, he didn't have that
much force.
And so if I didn't catch itearly enough, ultimately
we were in the hospital.
Yeah. Wow.
I imagine especially isthis being your your first
child, your introduction intoparenthood.
(13:53):
But that's gotta be scary.
Yes.
It's it's a very steep, almoststraight up learning curve.
Yes.
But especially the firstI typically tell people
usually about two years. Six.
And the reason why I saythat is because what they
don't tell you about a lotof these medical issues,
(14:14):
they tell you about theprimary system, but they don't
tell you about the secondaryissues that happened because of
the medical issue.
Like typically in Eagle Birdsyndrome, kids who don't
necessarily have a lot ofrespiratory issues.
But my son did, and forthe first five years
of his life, we were literallyin and out of the hospital every
(14:34):
six months in the ICU.
Every time we went, wow.
Yeah.
And so I'm, I'm curiousif you'd be willing to share.
Did that impact just evenyour own well-being, your own,
kind of mental wellnessand stability?
(14:54):
I mean, can you talk just alittle bit about what
was going on for youin that moment?
Yes.
It affected it vastly. Andso what I know now, because
of of events that have happenedthree years ago, what
I realize now from back thenwas I was grieving at
that point, not realizingI was meaning I was grieving
(15:18):
the life I thought we were goingto have versus the life that we
were given.
And as a subsequent issuefrom that, I held on to a lot
of anger for a verylong time now.
It was more of aninternal anger.
It wasn't necessarily directedat anybody, but it had
come, was, you know, eithersnappy combat comments or,
(15:43):
you know, kind of quick,weird stuff or snarky stuff.
And, I mean, it would come out,but it wasn't like I was looking
at my wife and yelling at herby any stretch of the
imagination.
It was just something I washolding on to.
That was coming out in itssome way.
The other way that it affectedme was, since the day my son
(16:06):
was born.
If I don't have medicinal help,I can't sleep because there were
several occasions throughoutthe years that I literally
woke up, heard him inhis monitor, came into his room,
and I'm in his room.
I had to get him up, get himdressed, and raced to
the hospital, in the middleof the night.
(16:27):
And so from that time forward.
So even to this day,I take a medication to help
me sleep.
And so I mean already, you know,you're maybe traditional newborn
kind of young child.
Those are sleeplessnights already.
Just fine by nature.
(16:47):
Now we're adding like you saidthat live.
It's almost like a necessity toit sounds like to be on
high alert.
So I can absolutely appreciate,like you said, that it's really
impacted, even just thesleep portion.
If we just want to talk about,you sure certainly know.
As a caveat to it,both of my kids were excellent
(17:09):
sleepers.
They slept through the nightfrom day one.
Wow.
I have worked in education,so you can imagine
I worked on the elementarylevel work with mostly women,
and I used to get so much flackfor that.
That's so unfair that you're.
And you said.
I said it may be, but I saidfor everything else I've been
given in life, God had togive me something
(17:31):
or I would have lost my minda long time ago.
And sleep is the one thinghe gave me.
Yeah.
And and so I, I was always and,and to this day, even with
just his sister and just alive,I'm still always in go mode.
I don't shut down.
(17:52):
Well, that's got tobe exhausting.
It is, especially onthose stretches where
I don't sleep.
Well, yeah.
Currently, I'm kind of acouple of days into
another stretch where I beensleeping.
Well, I know last year I,I did a stretch of three weeks
(18:13):
where I just, I just I was upand down all night, or I was
sleeping four hours a night or,you know, I was just.
I wasn't getting rest.
Yeah.
So how do you move throughthat to, you know, be able to
have some sort of capacityto still because when we
(18:35):
as parents, when we don't sleep,it doesn't mean that our job as
parents just we get to take,you know, time out.
We don't have time off inthat way.
So how do you how do youmanage that?
How do you work throughsomething like that and,
and still be able to kind ofdo the day to day get up and
take care of them?
I mean, it's all sound reallysimplistic, but I, I essentially
(18:58):
have just forced myselfto muscle through it.
Whereas most people might have,you know, a second or third
when I would get to my seventhand eighth wins because, I mean,
I just, I had toI had no other choice
other than just to do it.
I mean, it was just it was justmy way of life.
(19:20):
Yeah.
Were you able to find, you know,especially in the, in the
earlier years, any formsof support or resources
that that helped alleviate even,even in the slightest,
some of the pain and thestressors and the grief
that you were meant you werehaving to work through, yes.
(19:43):
And, knowing my personalitytype, I'm still going
to stress that, I mean, I couldhave everything sitting
at my door and I'm still goingto stress about it.
It's just it's just.
And I have accepted.
It's the nature of me.
I just I was sort of dealingwith my kids issue.
(20:04):
I have dealt with depressionfor 20 plus years, anxiety,
and I was just recentlydiagnosed ADHD.
And okay, when my, counselordiagnosed it to me, I
literally looked and I go,I said to her, well,
that explains a lot.
Over the last 40, 40 some years.
Wow.
And so I on top of I had tokind of push my issues aside
(20:29):
when I had a moment to,to be able to deal with my kids
and just everything going onwith them.
Yeah.
So, yeah, I just, I, I, I mean,I just did what I had to do.
Did you find that the stressorsthat you're dealing with as
(20:51):
a family, was that exacerbating,some of the depression
and anxiety that youalready kind of had been working
through?
It sounds like at this periodof time, if I'm hearing you
correctly, no, I don't rememberthat it did, honestly.
But I know that my I didn'trealize in the moment
(21:15):
and honestly, I fullyadmit every, the actions
that I did, my angerdid come out.
It wasn't towards the kids ormy wife, but it was affecting
our marriage.
And there were moments whereyou know, both my wife and I
(21:35):
were very blunt, just aswe grew up.
And there were momentswhere she, in response to me,
kind of laid into me.
And I respectfully took itbecause that's I mean, honestly,
that was the right thing to do.
Looking back on how I acted,because I didn't know
how to handle the immense amountof stress, and then it got to
(22:00):
a point to where even I went,enough of this garbage.
I need to see someone becauseI've got to get past this,
and I, I saw a counselor oneonce a week, every week
for a year, and I finallygot through a lot of the garbage
I was dealing with, the,the kind of help things along.
(22:23):
So, I mean, yeah, it did comeout and then the other thing was
it never got out of handby any stretch of the
imagination, but I foundmyself in the evenings
and my kids were asleep,or I was starting to drink
to take the edge off, becausethere was just so much stress.
(22:44):
And there was so much, at times,Life-Saving things I had to do
in a moment's notice that Ihad to have something that
just don't things for,if anything, a short period.
Yeah.
And so but again, like I said,that never got out of hand.
(23:05):
And, it wasn't a longperiod of time, but I finally
got to a point where,just like I, I've just
got to stop doing this.
And I imagine that in itselfof, of reaching out and kind
of coming to that awarenessof something's gotta change and,
and being able to, likeyou said, go to a counselor
and say, hey, there's there's alot of stressors here, that,
(23:29):
that are impacting and, and I'dlike some, some ways to be able
to help alleviate that because Ithink, again, and this is
a soapbox for another daythat we don't get taught some of
these emotion regulation, stressmanagement, how to be able
to like you said, when we'refeeling overwhelmed, we able to
(23:49):
actually work through thatwithout feeling like I just
I don't know anything elsebut to numb it.
So so here, I've gotta findsome way to numb it because it's
just too much.
Yeah, exactly.
And I mean, I, I went througha couple of vices, if you will,
(24:09):
never going to drugs or anythinglike that.
But that just neverwas my thing.
But, you know, I drank for alittle while.
I smoked cigars for a while.
I mean, I just, I went fromkind of one thing to the next
just to be able to get throughthose moments.
Yeah.
And I appreciate youmentioning even things
(24:31):
like cigars for you.
It sounds like they were coming,you know as, as something
to kind of take the edge offor to help relieve
because I think sometimeswe forget about those things
and we go, you know, smoking acigaret or, or smoking a cigar
or even having a drink of,of alcohol and.
(24:52):
Oh, it's it's not that's notwhat it's for.
But absolutely, when we'refinding kind of ourselves
reaching because we are justlooking to take the edge off,
that it could mean that it'spotentially something for us
to look into if wejust, like you said, kind of
those stressors that we justdon't know any other outlet
to be able to kind ofdeal with that.
(25:16):
Yeah.
Would you be willing youmentioned something
and I wanted to take a momentif we could, to circle
back to okay.
You mentioned grieving the wife.
I thought I would have readthe, the the parenting
piece of it.
And I've heard that before.
And I would love for you to saya little bit more about that
grieving, because I thinksometimes just as a, as a whole,
(25:39):
we miss that part and wemaybe don't give it space
or time.
We, you know, all of us,when we decide if we decide
that we want to have a family,you've got this mental picture
of what you think your familylife is going to be like.
I mean, you could go back toa classic example of the nuclear
(25:59):
family of, a husband,a wife, three kids, a dog,
the fence, that kind of thing.
And, you know, I didn'tnecessarily have that
picture, but I neverin my wildest imagination
thought that we would have to doall the medical stuff and all
the special needs.
Nor did I ever thought that Iwould, you know, outlive my son.
(26:22):
And, you know, some ofthe things I threw out
there, like, for example,I can run my mouth.
I mean, I'm a I'm a talker.
I'm like my father.
I can talk to a wall if I reallyneeded to.
I just, that's just how I am.
And then I had a sonwho was born that never talked
(26:44):
because he was nonverbal.
I had a son that all I everwanted to hear from him
was just him saying that once,and he never his entire
life said it.
My degrees in physicaleducation, I'm very
sports minded.
And not that I would havepushed him in it, but should
he have wanted to gointo sports, then we could have
(27:07):
had that, had thatbonding moment.
And he had special needswhere he probably would
have never played sports.
And so that was it for me.
That was kind of thethe grieving.
And then for my wife,it was just all the
normal things people getexcited about.
You know, your child's bornand then they roll over
(27:27):
and then they start crawling.
They start walking.
We didn't necessarilyhave those or, you know,
not that anybody wants theterrible twos, but we didn't
necessarily have that or some ofthe again, some of the things
that everybody else had,we weren't like anybody else
around us.
And so all of those thingswere really tough pill
(27:49):
to swallow for us.
Yeah, I imagine so.
And like you said, some of thesethings that maybe others
would take for granted,and then not having that and,
and the grief that comes with,like you said, just rolling
over. Great.
And you see that all the time.
(28:09):
I can't tell you how manycountless social media posts
I've seen of people doingthose things.
And oh, look at this milestone.
And then to not be ableto experience that in your own
parenting journey, thatthat it does come with a grief
that maybe doesn't gettalked about.
Yeah.
So okay.
(28:29):
So fast forward and thenyour second child was born
and you said if I,if I heard you correctly,
your second child alsohaving fragile medical needs,
I hear you correctly.
She did okay.
My son had the rarecondition, but both of my kids
had identical neurologicaldelays, which were severe.
(28:50):
Both had epilepsy.
In fact, of the sixdifferent kinds of seizures,
I've seen four of themin my house.
Wow.
Both of them were nonverbal.
Both of them could walk withassistance, but they couldn't
walk on their own.
So they were basically awheelchair bound.
Now, granted, if you put themboth on the floor, they could
(29:11):
ami crawl like nobody's businessbut like to stand up
and walk. No, my sonnever walked on his own.
My daughter has kind of stoodon her own for a brief moment,
but walked now.
And so that's one thing.
(29:32):
Like, we've done genetics forten years now, and they still
can't figure out whywhen there's been nobody
with medical needs in our familylike this.
We had two born two years apart,almost to the day, almost
identical to each other.
They still can't figure it out.
Yeah.
(29:52):
And I imagine that surprise,like you said, where there's not
there's not a preparationof this ABC runs in our family
then that just kind of piles onto this.
Like how do you preparefor something like that?
I mean, you don't and it's it'skind of along the ideology
of people that say, you know,one of them wants to
(30:15):
stay at home, and the only wayyou can do it, you can't
prepare for it.
You just have to do itbecause you if you prepare
for it, you'll never beready for it.
Yeah.
And getting introduced inthe special needs world
is similar.
I mean, most of us will neversee it coming, but
when that happens, you justyou gotta play the cards
(30:35):
that you're dealtand do the best you can
with them.
Yeah.
Was that when you gotthe news about your second
child?
Can you talk a little bitabout that experience and kind
of you're already dealing withwith your first child and now
the second child and getting,you know, this information
as well.
What's going on for you?
(30:56):
What's that like?
It hit hard.
I'll never forget it.
We had, in Georgia.
Here we have, babiesprogram called, Georgia Babies.
Can't wait.
And it's kind of an earlyintervention service for kids,
to help them, along with theirnormal steps and goals
(31:19):
up to a year or five years.
It's something like that.
And one day we hadan occupational therapist
that was coming in for my son,and she came in, she had
an intern with her,and she said, do you mind if
my intern does what they callthe Peabody Skills
Assessment test on yourdaughter?
And I weren't sureif I had to pay for that
(31:40):
out of pocket.
I don't know whatthat taskmaster said, so
practice away.
Yeah, and she did it, and I'llnever forget it.
She looks at me and she gets,in my professional opinion,
that your daughter's delayed.
And now this is the firstit has ever been mentioned
from anybody.
And I admit my response wasn'tthe best response.
(32:02):
And I sincerely apologizeto them.
But I literally looked at her.
I went pack up your assand get out of my house.
Wow, that cold hearted.
And yeah, because I my braincould not handle it.
When I heard that my brainjust shut down because I was
just like, the wheelsare starting to turn for her
(32:24):
on top of my son.
I don't know if I'mgonna be able to handle this.
And, you know, we went toour pediatrician, and she has
a special needs daughter.
And it was finally through ourpediatrician that said,
you know, I tend to agreewith you.
You may you may want to have herstart seeing her, neurologist.
Wow, wow.
(32:46):
And like you said, I canonly imagine I would probably be
in a similar state.
And, you know, even evento this day.
And I'm.
I've been a therapist for many,many years.
Think that your brain, like yousaid, would just shut down
like I.
I don't have anything elsefor you right now because
the house is on fireand there's no water to
(33:08):
put it out.
Yep.
Yeah. Wow.
And so then from that, like youmentioned, I know, you know,
kind of forwarding a hand, thenyou had the the passing
of your son.
And so I would love to kind ofif you're, if you're okay
with it, go in and thenthat experience on top of
(33:31):
everything else. Okay. Soup until about year six
it was a steep learning curve.
And after about year six,we really started leveling off.
At that point, we had a fewhospital stays.
We did have a major surgery.
To kind of give my son somereconstruction in his
(33:52):
midsection.
And that really helped on thehospital stays.
Once he had that surgery,it almost went down to nine.
And the only other hospitalhe had after that was about
five months before he actuallypassed.
He had a spinal fusion surgerybecause he had bad scoliosis.
(34:12):
Okay.
So all the things that I wasa stay at home parent
during this whole time andwith all of this hospital stays,
I got, like I said,I'm in his room and I'm
one of the other walls.
I used to have a shelving unit,and I had six respiratory
related machinery.
The the moment I heard a coughthat would come out of them,
(34:36):
I would immediately go into mymedical protocol and I would
go from a machine A to machine Bto Didi to have all the way
down the line to kind ofgive the crud loose,
get it suction up, get it into,to get it out of his stern,
out of his body is whatI had to do.
And then I at the end,I had to use a nebulizer, which
(34:57):
every parent knows what anebulizer is.
For breathing treatments to helpkeep it at bay.
And if that didn't work,I would end up in the hospital.
So all of my medical knowledgewas in kind of the respiratory,
neurological end of things.
Not so much outside of that.
And, I could get really detailedin him, but kind of the less
(35:21):
detailed version of itis three days before he
came home.
And that evening he got,you know, he threw up
a little bit while we werebrushing his teeth.
We kind of thought that maybe wehit his, like, gag reflex
and something just came up.
Yeah.
And didn't think much about it.
You know, we put himto bed, and, you know,
(35:43):
he's always been agreat sleeper.
Well, that night.
So that he.
If there was Wednesday night,he kind of threw up.
We put him to bed that night,and he was literally up and down
all night.
And which was unusual form.
So that next day, which wasThursday, I you know,
Texas teacher said, hey, I'mkeeping him home.
He's sick.
I don't know what he's got.
I don't want, you know,I don't want to spread into his
(36:04):
special education room.
I'm gonna keep him home.
Great.
Send my daughter off to school.
And then that day, like,I sent him in his
favorite chair.
And I kept telling him all day,buddy, you can take a nap.
You got to be exhausted.
You've been up for,at that point, 20 hours
or something like that.
Something ridiculous.
(36:25):
Well, and he wouldn'tgo to sleep.
He wouldn't drink or eata whole lot.
But that didn't strike meas anything, because it was
the first day.
And I looked at my wife and Isaid, what if he's refusing
tomorrow?
I said, that's going to catch myattention.
I said, I'm okay with one day.
That's the kid who wants to eator drink.
When you're feelinglike garbage.
(36:46):
Yeah.
And I said, if he's not doinga master, that's going to catch
my attention.
So he refused to take a nap.
He refused to do anythinglike that.
And then that eveningI put him to bed and he
immediately gets quiet.
My I just looked at my wifeand said, he's got to
be exhausted at this point.
He's been out for 40 hours.
He's just going to be hehe's probably just passed out
(37:09):
because he's just so exhausted.
The next morning we got,it was just a gut call.
I told my wife, I said, I'mgonna keep him home again.
It's Friday morning.
I said, worse comes the worst.
I've got the weekend.
Well, we'll get more time torecover.
We'll go back on Monday.
Gray told his teacher.
Sent my daughter off to school.
(37:30):
Typically, when I go in toget him up on a weekend,
he would bounce and clapand be excited to see everybody.
And I walked into his room andhis eyes were open and
I wouldn't say he was lethargic,but he just kind of.
He looked at me, but the lookwas kind of he looked through me
versus looking at me.
And I came over to the sideof his bed and I noticed
(37:52):
I on the right sideof his mouth.
He had a dark greenstreak of fluid that was coming
out of his mouth.
And I look at my wife and I go,the only thing that's dark
green in the body is bile.
And why is it coming outof his mouth?
Yeah.
So so I get him upand he's floppy and like.
Like he can't hold himself up.
And that doesn't strike mebecause I had a couple
(38:12):
of times before we went for arespiratory stay.
He was that way.
And I thought, well, man,I said, he looks like he's
getting sicker.
I need to just makesome decisions.
So I take him out into theliving room and I go through my
medical protocol and nothing'sassured.
Anything like that.
And because of his personality,typically he's either spongy
or really pliable inthat section.
(38:34):
And I go to feel it, and he islike cinder block wall
rock hard.
Wow.
Right where he's like intestineswould be.
And I go, this is not right.
I said, something's wrong.
And in that moment in mybrain, time starts slowing down.
I go, what am I going to do?
What's my next steps?
(38:54):
How am I going to do that?
And I look at my wife and I go,I'm going to get him dressed.
I'm taking him to children'sHospital.
Something's not right.
It was honestly a gut call.
Jim dress came in the van andI do like 90 miles an hour up
to the local children's hospitalbecause I don't know what's
going on.
I don't know how long isI get in there?
(39:14):
I park in the parking deck,and I go to get.
I get this chair, and I goto lift him out of the van.
And he's very floppyat this point, and this catches
my attention.
So I get him in his chair.
I get up to the like the frontdesk of the E.R., and I skip
the line to go to the nurse,and the security guard
comes over to me as if to say,you need to get in line.
(39:35):
And I look at him withoutskipping a beat.
I went, I don't thinkhe's breathing.
I need help immediately.
And the nurse hears me.
She comes over to me.
She looks at him.
Now understand?
I've been in this hospitala hundred times and she goes,
follow me and we go ata full run as fast as we can.
Go back into the E.R.
to a trauma room.
(39:57):
We get in there and I thembecause I've been in
the hospital so much,I unbuckling from his chair.
I put him on the gurney and Iinstinctively back away and hope
they don't let me stay in therebecause he's non-verbal.
He can't talk.
And so luckily for me, there's atrauma room next to this one,
and the doors are open andI back off in there to where
(40:19):
I can see things, butthey have room to do
their thing.
Yeah, well, a group oflike 30 people come in there
and.
And they just like antson an ant hill.
They cut off his clothes.
They immediately intubatein, which puts the tube down
to get air in his lungs.
And the first thing that theydo that catches my attention,
(40:40):
this guy walks over to his kneeand like a drill like drills
important to him justimmediately.
Wow.
And and it's literallygoing into his knee
like the bone.
Yeah.
And my son doesn't even flinch.
And so on.
Later asks him, what did you doright there?
And he said, typicallywhen people come in like this,
when we don't know what's goingon, he said, is it's a way
(41:02):
to get antibiotics into himvery quickly.
And I said, okay, well,they gave him no pain meds and a
normal person, if you drilledinto a bone, they would have
come off the table.
I mean, it would have been soexcruciating, like it
would have been soexcruciatingly painful, like
you would have probablypassed out because you're
(41:23):
you couldn't have mentallytaken it.
So they do that and we're thereabout two minutes and they
immediately start chestcompressions on him.
And I'm seeing this and I'mrecognizing it, but it's
just not registering inmy brain.
The severity of what'sgoing on here comes over to me.
And she goes down to the minute,how long has he been this way?
(41:43):
And I said, plus or minuslike two minutes.
He's been this wayfor this long, goes off,
barks orders.
He comes back to meand she goes, explain to me
this scenario as to why you comein, I tell her, and then
she goes back and barks orders.
They've been doing chestcompressions at this point
for about three minutes ish,and I see him get the I see him
(42:04):
get the paddles out.
They put him on himand I hear me all clear.
And just like a medical drama,it shocks him.
And he raises off the table.
And I'm because of hisrespiratory issues, I'm
very familiar with that much.
That shows the pulse, the heartrate, the oxygen,
all that on it.
And then the shock.
I'm in a good mood and goesright back to what it's doing.
(42:27):
And in that moment I geta little he's not coming back
and it's still the I'm like,I don't get emotional
at this point.
I just in my brain, I go, he'snot coming back.
Well, they were for 45continuous minutes trying to
save his life.
And they finally they get tothat point, comes over to me
(42:47):
and she said I could shock themagain.
But unfortunately I thinkthe results are going to
be the same.
And I said, do what's medicallynecessary or professional.
I said, this is out of mywheelhouse.
They do it.
Nothing changes.
And she pronounces them, I.
As you can imagine, I go off,I have a moment, and it's
(43:07):
literally like, 20s,I have a moment and I
immediately then call my wife.
My wife at this moment who'sworking from home, is thinking,
I'm going up to thehospital, he's getting married.
We're going to be there7 to 10 days as we normally are.
I'm going to come home.
I have to tell my wife and myson's dead on a table, and I
(43:28):
will never forget the soundshe made when I told her that
she had her moment, she regainedher composure.
I said, message your boss.
Leave work, call your parents.
Have them drive up here.
You're not in a state to drive.
You need to be up here.
And I left it at that.
(43:49):
She said okay, and that'swhat she did.
I then called my mother.
I'll never forget her responseand what she said.
Now, later on down the road,she goes.
How soon after he passeddid you call me?
I said, about ten minutes.
And she goes, you were eerilycalm, being only ten minutes
(44:10):
after your son had passed away.
She said you werealmost robotic.
And I said, well, in that momentI had to be because I
had to tell Jennifer, tell you,get information.
And I said, if I hadbeen a quote unquote blubbering
idiot at that point, I said,I wouldn't have been able
to talk to you all.
And I did that.
(44:30):
And then, you know,the care team came in
and all that kind of stuff.
And, you know, she askedif she could help.
And I pointed at my sonand I said, this is going
to sound cold and callous, and Ireally don't mean it to be.
I said, but I need informationright now.
That's what's going to help mein this moment.
And she goes, okay,what do you need to do?
(44:50):
And I literally rapid firedback to back like 20 questions.
I mean, as fast as I couldget them out of my mouth
and she takes a step backand then she goes, well,
let me answer the first oneshe got.
And, you know, she answersall of them.
But it's kind of inthis section.
We were there and people alwaysask me about that day.
(45:13):
What was the hardest thingoutside of them actually
passing?
I said, there are two thingsI'll never forget, I said
as I was sitting therewaiting on his mother
to come up.
I said it surprised me howcold he got, how fast he got
that way.
Like he had just beenpronounced.
It may have been 15 minutesand I wanted to go, like,
(45:34):
rub his hair out of his,his face.
And he was ice cold.
And it that shocked me.
And then the other thing waswhen we finally decided
to leave, and, you know,we're going to go to a funeral
home, that kind of thing.
I had to take all of his cut offclothes, put them on his empty
wheelchair, and we lived throughthat hospital, put it
in our van, and we're 60 milesfrom this hospital.
(45:56):
We had to drive 60 miles home,in literal dead silence.
Yeah, like we were just in shockto get home.
And I told people, I said,those are the two hardest things
I've ever had to do.
Wow.
And, gosh, I am so sorry that itjust to kind of hear you
(46:18):
tell that and to be in the roomand like, you should kind of see
all of this.
And I imagine just thehelplessness in that moment,
as they're carrying, I didn'tfeel helpless in that moment
because the thoughtmy brain was, the people
that are working,these are the best
(46:40):
people possible who, if theywere to save him.
When I realized he wasn'tcoming back to be
working on them because Ididn't have this kind
of knowledge.
And if there would have been,I mean, if I hadn't called
an ambulance.
Sure.
EMT is have a lot of medicalknowledge, but do they have it
to the point of like a hospital?
E.R.
(47:00):
that I don't know.
And even after the fact, when wewalked into the Haiti, our doc
came out of like a little cubbythat was right where she was.
And I stopped and I pointblanklooked and said, look, I am by
no means upset at any of y'all.
I said, y'all did the besty'all could.
I said, yes, this sucks.
I'm had my.
Moments later I said, justbecause I'm in shock
(47:22):
at this point, to be honestwith you.
I said, but thank you for allthe childhood and medical
dramas.
Do not do y'all justice.
And I said, I appreciateeverything you all did.
And I mean, I walked offI, you know, I get they get
affected by this to their humanjust as much.
I just wanted her to know,look, y'all did everything
(47:44):
y'all can.
I never thought y'all would workfor 45 continuous men.
And I knew they weren'tgoing to do 5 or 10, but the war
for almost an hour continuouslyto try to save him.
That just blew my mind.
Wow.
How do you.
Because I heard you mentionedin that point.
So, you know, you'reyou're feeling the shock, which
(48:06):
I think makes so much sense.
And, you know, you mentionedthere I'll have my moment later.
How do you move through thatand move forward from that?
I will say my the first momentI had was like I said, I'm
in his room.
(48:26):
We got into the house.
You can't see it here,but kind of, where
the curtain is on my screen.
If you go to the the otherside of that, there's a corner
in this room.
I will just wheelchair.
And with all of this cut offclothing, clothes on it,
and it has not left that spotin three years.
And when I came in here,I did that, and I kind of
(48:50):
stood by his bed and just kindof stared at it, and it was
just like, out of the blue,the dam broke and it hit me
like a mack truck.
And I had a moment for therefor a while, we knew that we had
to go over to my folks housebecause, like, my whole family
was over there and, you know,my brothers and I were cordial
(49:13):
with each other.
And it's not like we don't likeeach other.
It's just we typicallysee each other on family
functions that kind of like,oh, are we buddy buddy where
we hang out on the weekends?
No, but, you know, familyfunctions were together
all that.
I walk into my parents house andI've never been this way
around my eldest brother,but I saw him and I walked in.
(49:36):
My parents room and, like,my knees buckled and, like,
uncontrollably.
I don't know, I've never beenthat way around.
I don't know what it was aboutthat moment where I was
that way, and he grabbed meand gave me a hug.
And as I was having amoment and, you know,
I went into the living roomand everybody wanted to know
(49:59):
what was going on.
So I was trying to tellthem, but, you know, I get 4
or 5 words.
And then that, like tremblingfeeling started, and then
I get 4 or 5 words and I mean,that was the longest
conversation I thinkI've ever had.
And so that was kind of howI dealt with it.
And, you know, there was justa lot of anger, a
lot of emotion.
There was and there wasa lot of times I wanted
(50:21):
to go out and go outin the garage and punch a hole
through the drywall kindof scenarios, those kind
of things.
And then I'm one ofthose people in in situations
that are on or off the wall orsimilar to this, I have a weird
sense of humor.
And so a lot of my weirdsense of humor was coming out
(50:43):
when I wasn't having emotionalmoments, that kind of thing.
So that's kind of how I dealtwith it. Yeah.
How did you get from that toto the mission of letter?
So, Zachary, can you tell usa little bit about where
that was born from?
Sure.
So I'm a proponent of,of counseling and therapy,
(51:04):
always have been, right aftermy son, literally two weeks
before my son had passed,I had literally finished up
what I felt like was a seasonof therapy.
I called her, I told her,and I said, you know, if I need
you again, I'll get onyour waiting list, that kind
of thing.
And, I'll get back to you.
And so my son had passed and Icalled her, and I said, hey,
(51:25):
I need an emergency session.
I really don't want to talkabout it over the phone.
If you can squeeze mein anywhere, I promise you,
you will understandwhen we meet.
And luckily, she was ableto get me in.
And at that point, I was goingonce a week for a for a very
long while, and probablyabout the A about two months
(51:47):
into it.
I want to say we were talkingand she goes, have you
ever thought about journalingand the irony of my
next statement?
Based on the responseI've gotten since then, is
I said, you know, I don't knowif journaling is my thing.
I don't know how greatof a writer I am is.
My exact words.
And she goes, well, she said,you don't have to do it
(52:11):
right now.
She said, it's more of amindfulness activity to get it
off of off of you.
She said, you don'thave to share with anybody
if you want to.
You can, she said, you know,you can physically
write it down, shreddedor burning or whatever you want
to do with it.
It's more to get it off of youthan anything.
And I said, okay, well,I put that on the mental
backburner for probablynine months after that point,
(52:33):
I started, I resisted, I didn'twant to do it.
And then one day I goton Facebook and I was watching,
like a Facebook reel or a videoor something, and I don't even
remember what it was about.
And something in one ofthose videos struck a chord
with me.
They're related to my son.
And I was sitting on the couchand I just lost it,
(52:55):
like bawling, crying, you know,just ugly crying, you name it.
And it was in that moment that Iopened up a word document
and in proper OxfordEnglish style, I because that's
how my ADHD brain works.
I read it, you know,the day, dear Zachary and I
just verbally vomited on a page,and, like, I was real
(53:18):
into the sense of if I felt likeI needed to write an F-bomb,
because that's what Iwas feeling.
That's what I wrote.
And I did that severaltimes a day for weeks. And,
essentially what hadhappened was I got to know
this female admin of one of thegreat groups I was in, and on
one day I said, hey, do you mindif I post one of my journal
entries?
And before I could literallyfinish it, she goes, yes,
(53:41):
we would love for you.
Do we rarely, if ever,get man in here willing to
open up in this group?
And I said, okay, and I'm goingto go share.
And in my brain I go, no matterhow normal this may be, is it
still the internet?
Am I going to be able to handlenegative comments?
Should I get them?
Because at that point in time,my brain probably wasn't in the
(54:02):
best space and I went,oh well, I'll do it anyway.
And that evening I got amassively positive response.
The best comment I ever gotwas I had this one woman
in the group goes, we'venever met.
Our paths have never crossed,we've never talked.
I've never told anybodyanything.
(54:24):
Deep down how I feelabout the loss of my child.
And she shares your letter.
I, relate to it.
It's word for word, the entireletter.
And she goes, this speaks to me.
And I said, well, I appreciatethat.
It resonates units andinspired by my son.
And I kept doing these lettersfor weeks.
And when you start toget to a point where people
(54:46):
recognize that they think thatyou're good at something,
they start giving you thissuggestions, podcasting, writing
a book and, and all ofa sudden where, you know,
I don't know if I'm in the brainspace for it.
And it was somebody said, well,have you ever thought
about doing a Facebook page?
And I went, oh, what is that?
And they told me, they said,you're not creating
more material.
You're basically copying pastingat this point until you run
(55:09):
through it.
And she said, and they said,you can create a following
that way and go from there.
So that's kind of what I did.
And that typicallyis where I post everything
first, because that's whereeverything started.
But like in the in thepremise of it, I started
reaching out to people in thegrief community and started
getting pointers of whatworked for them or not,
(55:31):
because, like, I told them,I said, I think I've got
something here and I wantto grow it.
And so because ofthose pointers, I really started
to grow, for, for whatI was doing.
And so that's basicallyhow Letters to Zachary came out.
I write letters, I writeprayers, I do memes, I do short
(55:52):
videos, I do, GIFs or just.
I can never pronounce that.
Right.
I do, you know, I do anythinggrief related.
I'm on Facebook.
I'm on Instagram, I'meven on TikTok.
And I never thought I'd beon Tik Tok.
And I've grown to like itjust because I, in my
(56:14):
ADHD brain.
Because I.
So I always randomly come upwith thoughts especially related
to grieve.
I can go on the record a twominute video about a song,
grief, and get people to respondon it.
And so that's why I like TikTokso much, is because it
works with just how mybrain operates.
(56:34):
But, I mean, I, I've evencreated a professional website.
So, I mean, it's and I mean,I've only been doing this now
17 months.
Oh, wow.
Okay.
And, and so I've done that.
I'm also published.
I have gotten published.
It's not a book.
It's actually a coloringbook. Okay.
(56:56):
Well, I think that's a perfectsegue way into our
shameless plug section.
For anybody who is looking forsome of these resources wanting
to connect with you, pleasetell us how we can find
all of these these thingsthat you're offering.
Sure.
For those the ones that areinterested, that want to
get connected with me,you can go to letters to
(57:18):
zachary.com, and Zacharyis spelled Z.
ACH a r y.
I know some people spelled e r yand that'll that. Yeah.
I've got icons for all mysocial media at the bottom
of the page.
I've got, journal entriesof the first full year of grief,
(57:40):
connected to my page as well asmultiple other writings
and different forms.
If you're interested in thecoloring book I just
mentioned, it's like thethird or fourth section down,
you'll see, and the buttonthere will take you directly
to the Amazon page for,I've got an About Me section.
(58:01):
I've got, a lot of the mediaI've been on.
I've got, grief resourceson there.
I've got several differentthings on there to kind of help
people out.
Just kind of in the,in the grief community.
Wonderful.
And as always, anybody who'slistening, we will make sure
those links are inour show notes, so
(58:22):
you can pop down thereand make sure to grab
those links as well to getconnected.
With Jason, decent.
Thank you so much for beingwilling to, not only share
this recipe that I'mlooking forward to trying,
but also for being willingto share your story
in such a raw and unfiltered waythat I think will have
(58:44):
so much value to our listenerswho have maybe walking
in a similar journey or haveexperienced similar things,
or even those who are listening,that maybe you're wanting
to support someone who'sgoing through that, give them
a little bit of insight onmaybe what it's like.
And so thank you.
Thank you so much.
It's such an honor to be able toto have you on today.
(59:08):
We thank you so muchfor having me.
Yes.
And thank you, everyonefor listening.
And make sure to come backnext time.
We'll see you then.
If you or anyone that you knowis struggling with any of
the topics that we discussed intoday's episode, make sure
to check out our show notesfor support and resource.
This you can get help.
(59:29):
Thanks again for joining uson today's episode of
The Real Family Eats.
If you're a parent readyto share your real life
parenting story, make sure toreach out to us and our website
found in the show notes.
And that goes for today's recipesocial media's support
and resources.
All of that can be foundin our show notes,
so make sure to check them outand make sure to follow, like,
(59:52):
share, subscribe, and stayup to date on all things
the real family eats.
I hope you'll join us next timefor more food for thought
and thoughtful food.
Enjoy your eat!
I never in my wildestimagination thought that we
(00:03):
would have to do all themedical stuff and all
the special needs stuff.
Nor did I ever thoughtthat I would, you know,
outlive my son.
Hey, everyone.
Thanks for joining me.
My name is Reesa and I'myour host.
(00:25):
We are talking to real familiesabout real stories.
Here on the real family eatswhere we've got food for thought
and thoughtful food.
So let's eat.
(00:46):
Welcome back everyone.
Thank you so much for tuning in.
I'm so glad that you are here.
I am so very honored,to be having our chat with our
guest today.
I have Jason, who is beenkind enough to join us.
City.
Hi, Jason, thank you so muchfor being a guest here.
Hello, and thank youfor having me on.
Yes, absolutely.
(01:07):
Okay, Jason, for anybody who islistening, who doesn't know who
you are, can you pleaseintroduce yourself for us?
Yes.
My name is Jason Tuttle.
I'm a married father.
21 years this year.
Two medically fragile children.
Within about the firstfive years of my marriage.
I had two kids that wereboth born with severe
(01:30):
neurological delays.
Epilepsy, nonverbal, basic,wheelchair bound.
And then my son was born with arare condition on top
of everything else.
So, we started our, marriagevery quickly, being
introduced into the specialneeds live.
We got, unfortunately,just 15 years of my son.
(01:55):
As of about three years ago,he suddenly and unexpectedly
passed away.
And after a period of grieving,I decided in a way, to create
a legacy for my son to createmy online platform
called Letters to Zachary.
Wow.
And I know you're goingto tell us all about, letters
(02:16):
to Zachary a little bitlater on.
And that's just a sneak preview.
So thank you so much.
For being willing to come inand get so vulnerable and honest
with us because I thinkthat this is, a topic that
our society would probablymuch rather look over.
And when you're going through itas a parent, because it
is things that peopleexperience, it can feel so gosh
(02:38):
darn isolating.
So thank you.
Before we jump into this story.
Tell me what recipeare you sharing with our parents
today and why did you choosethis one?
Well, I mean, because of theaforementioned special
needs life and having that and Ihave a lot of complicated
(02:59):
things in my life that I hadto know typically, when I cook.
I'm a pretty simplistic cook.
Just because it is, at the endof the day, all I want to do
is simple.
And I looked online.
I'm a fan of chili and years agoI was a fan of very spicy
(03:22):
hot chili.
But due to some healthconditions, I've had to
scale back on the spicinessof a lot of things.
And I came across batches.
Black bean chili.
Honestly, I don't remember.
All recipes.com is where Ifound it.
Wonderful.
And, I chose it because, one,it only had about 4 or 5
(03:47):
ingredients.
It wasn't too expensive,and I could kind of cartridge
spiciness based on what Ior my kids wanted.
My son, was definitely like mein the sense that he loves
spicy food, and that'sanother reason why I chose it.
Yeah, I love that.
(04:08):
And I love that you mentionedkind of that simplistic.
I feel like so many parentsthat I've heard of,
I know myself that sometimesyou don't have the
capacity to do, you know, afive course meal.
And so you do need somethingthat's going to be hearty
and just simple that we canthrow together.
Which is why I love this.
We're a big chili fan householdas well.
(04:31):
We haven't quite tried this one.
I feel like everybody hastheir own take on, series,
and so I'm excited to try thisone today.
So, with that in mind,can you tell us give us
the overview of the steps?
And then I'll get cookingwhile we chat.
Okie dokie.
So typically when I cook it,I don't blow it up because I
(04:51):
love chili.
And I'll eat it for days on end.
So, okay, all the thingsthat I'm giving people,
I typically do twice as muchjust because I like to make more
to have for later.
And I mean, I'll eat itcold, hot, you name it.
But the ingredientsare basically, pound of ground
round.
I've used that.
(05:11):
I've used regular hamburger.
I've used several different.
And they're all pretty goodwith it.
Okay.
Two for 15 ounce cans of blackbeans.
It says no salt, but I've doneeither one.
They're both good.
Two cans, eight ounce cans of,no salt, tomato sauce,
(05:32):
a jar of salsa.
I typically do mild in therebecause, if I adjust the
spiciness of it, I do it more inthe powder side of it versus
the salsa side of it.
And then a tablespoon of chiliseasoning.
And basically, the longestpart for me is just browning
(05:52):
the hamburger meat thatI'm using.
And then once I get that done,it's literally you put it in
a big stockpot and you dumpliterally everything in and you
let it simmer for about30 minutes.
About the only thing, that youhave to do outside of
dumping it in is one of the cansof black beans at once.
(06:13):
The liquid in there,and one of it once it drained
out of just so it's not so soupyin the end.
Okay, that makes sense.
Well, I can do that.
And thankfully, I've got myI've got my brown meat already
kind of quick.
So we're just like you said,throw it in and let it simmer.
So I'm excited to do that today.
So while I do that and while Iget going, I would love to
(06:38):
kind of start at the beginning.
I heard you mentioned,and giving this a little bit
of a background for you thatyour introduction in your,
in your spouse's introductioninto parenthood was kind of
really quick in the senseof jumping to from just
difficulty of becoming a parentand that like transition
(06:59):
to kind of expert levelin the sense that you're
now dealing with childrenwith fragile medical needs.
It sounds like.
And so I would love to startif you could share with me
and anyone who's listeningwhat that was like, even
just at the beginning, and kindof getting those diagnoses
(07:19):
as new parents, what that waslike for you folks.
In my blunt version,as I always am, it was like
getting hit by a mack truckwhile you're standing on
the interstate is what it was,at least in the beginning,
specifically for therare condition.
I won't get into a long,drawn out version, but the
(07:40):
the basic story leading upto all that was.
My wife and I got married.
We were, mid to late 20swhen we got married.
We wanted to have, several kidsat that point before we found
out about my son's,all of his issues, and
we had no reason to believethat there were going to be
any issues.
(08:01):
We were perfectly fine upuntil the week 20 appointment,
which is that appointment whereyou find out the sex of
the child.
And we got in there.
And just to tell youthe kind of, regionally,
culturally different viewson things.
My wife, being fromthe northeast and a cradle
Catholic, did not will for anyreason wanted to know the sex of
(08:23):
the child.
It was the last great surprise.
She didn't want to know.
I'm not born and raisedin the South, but I've lived
in the South most of my life.
I wanted to know the sexof the child.
And plus I was doing the nurseryand all that.
And so I kind of want to caterto whatever we were having
at that point.
And we, my family even actuallywas big in the ancestry in that,
(08:48):
my father went backten generations in our family,
and we asked about fivegenerations of my wife's family,
and there were no medicalissues, no, no medical issue
that was in, say, self-induced,like an alcoholism or something
like that in the families. Yeah.
So we get into the week20 appointment and we're
(09:11):
going back and forth and,ultrasound tech goes,
at the point of finding outthe sex of the child, you want
to know.
And my wife and I playfullygo back and forth and before
we can finish, she goes, well,I've found an issue and I need
to know.
So at that point, we got towatch the sex of our child.
This is you having a boy?
(09:31):
Great.
And I looked at her and said,can you tell me what
the issue is?
And she looks at meand she said, well, that's
more of a doctor relayedmessage.
And I said, okay, I understand.
And I said, well, canyou answer this?
Why did you need to know the sexof the child?
And she said, well, if that'swhat I think I'm seeing.
She said, it's rare.
(09:52):
And boys but even rare earthand girls and that's
all we know.
Wow.
The next step was, they referredus to a perinatal allergies,
which is kind of a whole,high risk ObGyn.
And we saw him from week20 to week 38, and we 38
(10:13):
was the week that my wife had aC-section.
You know, we went throughthat process.
He was wrapped up.
We literally thumb saw him30 seconds and then
wished him away to the neck.
You in that hospital?
Well, my wife had to goto recovery.
And then I went up there,and it wasn't until the
moment I walked in that Nikkiwhere he goes, by the way,
(10:35):
your son was born with arare condition called Eagle
Barrett's syndrome.
And at the time he was born,it was 1 in 40,000 births.
Wow.
Oh my goodness.
Okay, so for anybody whodoesn't know what that is,
can you maybe just give us,a little bit of a summary of
what is that what are someof the symptoms?
(10:57):
So it's a rare condition becausethey know characteristics
about it, but they don't knowthe official start point to it.
They know it's a GI issue.
They know it's, there'skidney issues, which meaning
my son was only born with onekidney.
The one kidney he did havedid sustain some damage
in utero.
And so what that meant waswhen he was born, the more
(11:19):
he got to an adult, did he haveenough good kidney to sustain
normal function? Yeah.
There's kidney issues there.
He was born with an abnormallylarge bladder that needed to be
given a catheter everyfour hours.
At least the first five years ofhis life.
That's a part of eagle, eaglebear syndrome.
(11:41):
And so basically, what it meantwas where you and I get
that sensation that we'vegot to go.
He didn't necessarily get that.
And what that also meant was,if I didn't care for them,
he was susceptible to urinarytract infections.
And for those that don't know,the reason why you get those
infections is because there'ssediment in that fluid, and it's
(12:03):
that sediment.
The irritates and causingcauses.
The infection.
And so that's why you haveto, void or drain your bladder
to get it out so it doesn'thappen.
It's kidney issues,an abnormally large bladder
that has to be, drained.
The main reason why it'scalled, eagle bearer syndrome,
(12:25):
and it's also moreaffectionately known as prune
belly, is because my son was notwas born without any core
dominant muscle.
He had none.
So, like, I could lay himon the floor.
And the only thing betweenhis organs and the outside world
was the skin in the fashionthat hold the skin together.
(12:45):
So I could literally lay himon the floor.
And from the outside I couldtouch his small intestine.
His large intestine ishis bladder, his stomach is.
And he literally was like one ofthose plastic like biology
dummies.
You see in high schoolthat since I could
literally touch all thatand that section from
the outside.
And so that is all eaglebear syndrome.
(13:10):
But one of the reasons why hewas medically fragile is because
the secondary issue of that wasbecause he didn't have that core
muscle there, whereas you andI can when we get a pneumonia
or flu, we can coughthe crud out.
And the reason why is becausewe have that muscle there.
We can create pressureon that muscle, muscle like
(13:31):
a foundation.
And it's it pushes all of thatmuscle to force it out.
Or because he didn't have thatmuscle, he didn't have that
much force.
And so if I didn't catch itearly enough, ultimately
we were in the hospital.
Yeah. Wow.
I imagine especially isthis being your your first
child, your introduction intoparenthood.
(13:53):
But that's gotta be scary.
Yes.
It's it's a very steep, almoststraight up learning curve.
Yes.
But especially the firstI typically tell people
usually about two years. Six.
And the reason why I saythat is because what they
don't tell you about a lotof these medical issues,
(14:14):
they tell you about theprimary system, but they don't
tell you about the secondaryissues that happened because of
the medical issue.
Like typically in Eagle Birdsyndrome, kids who don't
necessarily have a lot ofrespiratory issues.
But my son did, and forthe first five years
of his life, we were literallyin and out of the hospital every
(14:34):
six months in the ICU.
Every time we went, wow.
Yeah.
And so I'm, I'm curiousif you'd be willing to share.
Did that impact just evenyour own well-being, your own,
kind of mental wellnessand stability?
(14:54):
I mean, can you talk just alittle bit about what
was going on for youin that moment?
Yes.
It affected it vastly. Andso what I know now, because
of of events that have happenedthree years ago, what
I realize now from back thenwas I was grieving at
that point, not realizingI was meaning I was grieving
(15:18):
the life I thought we were goingto have versus the life that we
were given.
And as a subsequent issuefrom that, I held on to a lot
of anger for a verylong time now.
It was more of aninternal anger.
It wasn't necessarily directedat anybody, but it had
come, was, you know, eithersnappy combat comments or,
(15:43):
you know, kind of quick,weird stuff or snarky stuff.
And, I mean, it would come out,but it wasn't like I was looking
at my wife and yelling at herby any stretch of the
imagination.
It was just something I washolding on to.
That was coming out in itssome way.
The other way that it affectedme was, since the day my son
(16:06):
was born.
If I don't have medicinal help,I can't sleep because there were
several occasions throughoutthe years that I literally
woke up, heard him inhis monitor, came into his room,
and I'm in his room.
I had to get him up, get himdressed, and raced to
the hospital, in the middleof the night.
(16:27):
And so from that time forward.
So even to this day,I take a medication to help
me sleep.
And so I mean already, you know,you're maybe traditional newborn
kind of young child.
Those are sleeplessnights already.
Just fine by nature.
(16:47):
Now we're adding like you saidthat live.
It's almost like a necessity toit sounds like to be on
high alert.
So I can absolutely appreciate,like you said, that it's really
impacted, even just thesleep portion.
If we just want to talk about,you sure certainly know.
As a caveat to it,both of my kids were excellent
(17:09):
sleepers.
They slept through the nightfrom day one.
Wow.
I have worked in education,so you can imagine
I worked on the elementarylevel work with mostly women,
and I used to get so much flackfor that.
That's so unfair that you're.
And you said.
I said it may be, but I saidfor everything else I've been
given in life, God had togive me something
(17:31):
or I would have lost my minda long time ago.
And sleep is the one thinghe gave me.
Yeah.
And and so I, I was always and,and to this day, even with
just his sister and just alive,I'm still always in go mode.
I don't shut down.
(17:52):
Well, that's got tobe exhausting.
It is, especially onthose stretches where
I don't sleep.
Well, yeah.
Currently, I'm kind of acouple of days into
another stretch where I beensleeping.
Well, I know last year I,I did a stretch of three weeks
(18:13):
where I just, I just I was upand down all night, or I was
sleeping four hours a night or,you know, I was just.
I wasn't getting rest.
Yeah.
So how do you move throughthat to, you know, be able to
have some sort of capacityto still because when we
(18:35):
as parents, when we don't sleep,it doesn't mean that our job as
parents just we get to take,you know, time out.
We don't have time off inthat way.
So how do you how do youmanage that?
How do you work throughsomething like that and,
and still be able to kind ofdo the day to day get up and
take care of them?
I mean, it's all sound reallysimplistic, but I, I essentially
(18:58):
have just forced myselfto muscle through it.
Whereas most people might have,you know, a second or third
when I would get to my seventhand eighth wins because, I mean,
I just, I had toI had no other choice
other than just to do it.
I mean, it was just it was justmy way of life.
(19:20):
Yeah.
Were you able to find, you know,especially in the, in the
earlier years, any formsof support or resources
that that helped alleviate even,even in the slightest,
some of the pain and thestressors and the grief
that you were meant you werehaving to work through, yes.
(19:43):
And, knowing my personalitytype, I'm still going
to stress that, I mean, I couldhave everything sitting
at my door and I'm still goingto stress about it.
It's just it's just.
And I have accepted.
It's the nature of me.
I just I was sort of dealingwith my kids issue.
(20:04):
I have dealt with depressionfor 20 plus years, anxiety,
and I was just recentlydiagnosed ADHD.
And okay, when my, counselordiagnosed it to me, I
literally looked and I go,I said to her, well,
that explains a lot.
Over the last 40, 40 some years.
Wow.
And so I on top of I had tokind of push my issues aside
(20:29):
when I had a moment to,to be able to deal with my kids
and just everything going onwith them.
Yeah.
So, yeah, I just, I, I, I mean,I just did what I had to do.
Did you find that the stressorsthat you're dealing with as
(20:51):
a family, was that exacerbating,some of the depression
and anxiety that youalready kind of had been working
through?
It sounds like at this periodof time, if I'm hearing you
correctly, no, I don't rememberthat it did, honestly.
But I know that my I didn'trealize in the moment
(21:15):
and honestly, I fullyadmit every, the actions
that I did, my angerdid come out.
It wasn't towards the kids ormy wife, but it was affecting
our marriage.
And there were moments whereyou know, both my wife and I
(21:35):
were very blunt, just aswe grew up.
And there were momentswhere she, in response to me,
kind of laid into me.
And I respectfully took itbecause that's I mean, honestly,
that was the right thing to do.
Looking back on how I acted,because I didn't know
how to handle the immense amountof stress, and then it got to
(22:00):
a point to where even I went,enough of this garbage.
I need to see someone becauseI've got to get past this,
and I, I saw a counselor oneonce a week, every week
for a year, and I finallygot through a lot of the garbage
I was dealing with, the,the kind of help things along.
(22:23):
So, I mean, yeah, it did comeout and then the other thing was
it never got out of handby any stretch of the
imagination, but I foundmyself in the evenings
and my kids were asleep,or I was starting to drink
to take the edge off, becausethere was just so much stress.
(22:44):
And there was so much, at times,Life-Saving things I had to do
in a moment's notice that Ihad to have something that
just don't things for,if anything, a short period.
Yeah.
And so but again, like I said,that never got out of hand.
(23:05):
And, it wasn't a longperiod of time, but I finally
got to a point where,just like I, I've just
got to stop doing this.
And I imagine that in itselfof, of reaching out and kind
of coming to that awarenessof something's gotta change and,
and being able to, likeyou said, go to a counselor
and say, hey, there's there's alot of stressors here, that,
(23:29):
that are impacting and, and I'dlike some, some ways to be able
to help alleviate that because Ithink, again, and this is
a soapbox for another daythat we don't get taught some of
these emotion regulation, stressmanagement, how to be able
to like you said, when we'refeeling overwhelmed, we able to
(23:49):
actually work through thatwithout feeling like I just
I don't know anything elsebut to numb it.
So so here, I've gotta findsome way to numb it because it's
just too much.
Yeah, exactly.
And I mean, I, I went througha couple of vices, if you will,
(24:09):
never going to drugs or anythinglike that.
But that just neverwas my thing.
But, you know, I drank for alittle while.
I smoked cigars for a while.
I mean, I just, I went fromkind of one thing to the next
just to be able to get throughthose moments.
Yeah.
And I appreciate youmentioning even things
(24:31):
like cigars for you.
It sounds like they were coming,you know as, as something
to kind of take the edge offor to help relieve
because I think sometimeswe forget about those things
and we go, you know, smoking acigaret or, or smoking a cigar
or even having a drink of,of alcohol and.
(24:52):
Oh, it's it's not that's notwhat it's for.
But absolutely, when we'refinding kind of ourselves
reaching because we are justlooking to take the edge off,
that it could mean that it'spotentially something for us
to look into if wejust, like you said, kind of
those stressors that we justdon't know any other outlet
to be able to kind ofdeal with that.
(25:16):
Yeah.
Would you be willing youmentioned something
and I wanted to take a momentif we could, to circle
back to okay.
You mentioned grieving the wife.
I thought I would have readthe, the the parenting
piece of it.
And I've heard that before.
And I would love for you to saya little bit more about that
grieving, because I thinksometimes just as a, as a whole,
(25:39):
we miss that part and wemaybe don't give it space
or time.
We, you know, all of us,when we decide if we decide
that we want to have a family,you've got this mental picture
of what you think your familylife is going to be like.
I mean, you could go back toa classic example of the nuclear
(25:59):
family of, a husband,a wife, three kids, a dog,
the fence, that kind of thing.
And, you know, I didn'tnecessarily have that
picture, but I neverin my wildest imagination
thought that we would have to doall the medical stuff and all
the special needs.
Nor did I ever thought that Iwould, you know, outlive my son.
(26:22):
And, you know, some ofthe things I threw out
there, like, for example,I can run my mouth.
I mean, I'm a I'm a talker.
I'm like my father.
I can talk to a wall if I reallyneeded to.
I just, that's just how I am.
And then I had a sonwho was born that never talked
(26:44):
because he was nonverbal.
I had a son that all I everwanted to hear from him
was just him saying that once,and he never his entire
life said it.
My degrees in physicaleducation, I'm very
sports minded.
And not that I would havepushed him in it, but should
he have wanted to gointo sports, then we could have
(27:07):
had that, had thatbonding moment.
And he had special needswhere he probably would
have never played sports.
And so that was it for me.
That was kind of thethe grieving.
And then for my wife,it was just all the
normal things people getexcited about.
You know, your child's bornand then they roll over
(27:27):
and then they start crawling.
They start walking.
We didn't necessarilyhave those or, you know,
not that anybody wants theterrible twos, but we didn't
necessarily have that or some ofthe again, some of the things
that everybody else had,we weren't like anybody else
around us.
And so all of those thingswere really tough pill
(27:49):
to swallow for us.
Yeah, I imagine so.
And like you said, some of thesethings that maybe others
would take for granted,and then not having that and,
and the grief that comes with,like you said, just rolling
over. Great.
And you see that all the time.
(28:09):
I can't tell you how manycountless social media posts
I've seen of people doingthose things.
And oh, look at this milestone.
And then to not be ableto experience that in your own
parenting journey, thatthat it does come with a grief
that maybe doesn't gettalked about.
Yeah.
So okay.
(28:29):
So fast forward and thenyour second child was born
and you said if I,if I heard you correctly,
your second child alsohaving fragile medical needs,
I hear you correctly.
She did okay.
My son had the rarecondition, but both of my kids
had identical neurologicaldelays, which were severe.
(28:50):
Both had epilepsy.
In fact, of the sixdifferent kinds of seizures,
I've seen four of themin my house.
Wow.
Both of them were nonverbal.
Both of them could walk withassistance, but they couldn't
walk on their own.
So they were basically awheelchair bound.
Now, granted, if you put themboth on the floor, they could
(29:11):
ami crawl like nobody's businessbut like to stand up
and walk. No, my sonnever walked on his own.
My daughter has kind of stoodon her own for a brief moment,
but walked now.
And so that's one thing.
(29:32):
Like, we've done genetics forten years now, and they still
can't figure out whywhen there's been nobody
with medical needs in our familylike this.
We had two born two years apart,almost to the day, almost
identical to each other.
They still can't figure it out.
Yeah.
(29:52):
And I imagine that surprise,like you said, where there's not
there's not a preparationof this ABC runs in our family
then that just kind of piles onto this.
Like how do you preparefor something like that?
I mean, you don't and it's it'skind of along the ideology
of people that say, you know,one of them wants to
(30:15):
stay at home, and the only wayyou can do it, you can't
prepare for it.
You just have to do itbecause you if you prepare
for it, you'll never beready for it.
Yeah.
And getting introduced inthe special needs world
is similar.
I mean, most of us will neversee it coming, but
when that happens, you justyou gotta play the cards
(30:35):
that you're dealtand do the best you can
with them.
Yeah.
Was that when you gotthe news about your second
child?
Can you talk a little bitabout that experience and kind
of you're already dealing withwith your first child and now
the second child and getting,you know, this information
as well.
What's going on for you?
(30:56):
What's that like?
It hit hard.
I'll never forget it.
We had, in Georgia.
Here we have, babiesprogram called, Georgia Babies.
Can't wait.
And it's kind of an earlyintervention service for kids,
to help them, along with theirnormal steps and goals
(31:19):
up to a year or five years.
It's something like that.
And one day we hadan occupational therapist
that was coming in for my son,and she came in, she had
an intern with her,and she said, do you mind if
my intern does what they callthe Peabody Skills
Assessment test on yourdaughter?
And I weren't sureif I had to pay for that
(31:40):
out of pocket.
I don't know whatthat taskmaster said, so
practice away.
Yeah, and she did it, and I'llnever forget it.
She looks at me and she gets,in my professional opinion,
that your daughter's delayed.
And now this is the firstit has ever been mentioned
from anybody.
And I admit my response wasn'tthe best response.
(32:02):
And I sincerely apologizeto them.
But I literally looked at her.
I went pack up your assand get out of my house.
Wow, that cold hearted.
And yeah, because I my braincould not handle it.
When I heard that my brainjust shut down because I was
just like, the wheelsare starting to turn for her
(32:24):
on top of my son.
I don't know if I'mgonna be able to handle this.
And, you know, we went toour pediatrician, and she has
a special needs daughter.
And it was finally through ourpediatrician that said,
you know, I tend to agreewith you.
You may you may want to have herstart seeing her, neurologist.
Wow, wow.
(32:46):
And like you said, I canonly imagine I would probably be
in a similar state.
And, you know, even evento this day.
And I'm.
I've been a therapist for many,many years.
Think that your brain, like yousaid, would just shut down
like I.
I don't have anything elsefor you right now because
the house is on fireand there's no water to
(33:08):
put it out.
Yep.
Yeah. Wow.
And so then from that, like youmentioned, I know, you know,
kind of forwarding a hand, thenyou had the the passing
of your son.
And so I would love to kind ofif you're, if you're okay
with it, go in and thenthat experience on top of
(33:31):
everything else. Okay. Soup until about year six
it was a steep learning curve.
And after about year six,we really started leveling off.
At that point, we had a fewhospital stays.
We did have a major surgery.
To kind of give my son somereconstruction in his
(33:52):
midsection.
And that really helped on thehospital stays.
Once he had that surgery,it almost went down to nine.
And the only other hospitalhe had after that was about
five months before he actuallypassed.
He had a spinal fusion surgerybecause he had bad scoliosis.
(34:12):
Okay.
So all the things that I wasa stay at home parent
during this whole time andwith all of this hospital stays,
I got, like I said,I'm in his room and I'm
one of the other walls.
I used to have a shelving unit,and I had six respiratory
related machinery.
The the moment I heard a coughthat would come out of them,
(34:36):
I would immediately go into mymedical protocol and I would
go from a machine A to machine Bto Didi to have all the way
down the line to kind ofgive the crud loose,
get it suction up, get it into,to get it out of his stern,
out of his body is whatI had to do.
And then I at the end,I had to use a nebulizer, which
(34:57):
every parent knows what anebulizer is.
For breathing treatments to helpkeep it at bay.
And if that didn't work,I would end up in the hospital.
So all of my medical knowledgewas in kind of the respiratory,
neurological end of things.
Not so much outside of that.
And, I could get really detailedin him, but kind of the less
(35:21):
detailed version of itis three days before he
came home.
And that evening he got,you know, he threw up
a little bit while we werebrushing his teeth.
We kind of thought that maybe wehit his, like, gag reflex
and something just came up.
Yeah.
And didn't think much about it.
You know, we put himto bed, and, you know,
(35:43):
he's always been agreat sleeper.
Well, that night.
So that he.
If there was Wednesday night,he kind of threw up.
We put him to bed that night,and he was literally up and down
all night.
And which was unusual form.
So that next day, which wasThursday, I you know,
Texas teacher said, hey, I'mkeeping him home.
He's sick.
I don't know what he's got.
I don't want, you know,I don't want to spread into his
(36:04):
special education room.
I'm gonna keep him home.
Great.
Send my daughter off to school.
And then that day, like,I sent him in his
favorite chair.
And I kept telling him all day,buddy, you can take a nap.
You got to be exhausted.
You've been up for,at that point, 20 hours
or something like that.
Something ridiculous.
(36:25):
Well, and he wouldn'tgo to sleep.
He wouldn't drink or eata whole lot.
But that didn't strike meas anything, because it was
the first day.
And I looked at my wife and Isaid, what if he's refusing
tomorrow?
I said, that's going to catch myattention.
I said, I'm okay with one day.
That's the kid who wants to eator drink.
When you're feelinglike garbage.
(36:46):
Yeah.
And I said, if he's not doinga master, that's going to catch
my attention.
So he refused to take a nap.
He refused to do anythinglike that.
And then that eveningI put him to bed and he
immediately gets quiet.
My I just looked at my wifeand said, he's got to
be exhausted at this point.
He's been out for 40 hours.
He's just going to be hehe's probably just passed out
(37:09):
because he's just so exhausted.
The next morning we got,it was just a gut call.
I told my wife, I said, I'mgonna keep him home again.
It's Friday morning.
I said, worse comes the worst.
I've got the weekend.
Well, we'll get more time torecover.
We'll go back on Monday.
Gray told his teacher.
Sent my daughter off to school.
(37:30):
Typically, when I go in toget him up on a weekend,
he would bounce and clapand be excited to see everybody.
And I walked into his room andhis eyes were open and
I wouldn't say he was lethargic,but he just kind of.
He looked at me, but the lookwas kind of he looked through me
versus looking at me.
And I came over to the sideof his bed and I noticed
(37:52):
I on the right sideof his mouth.
He had a dark greenstreak of fluid that was coming
out of his mouth.
And I look at my wife and I go,the only thing that's dark
green in the body is bile.
And why is it coming outof his mouth?
Yeah.
So so I get him upand he's floppy and like.
Like he can't hold himself up.
And that doesn't strike mebecause I had a couple
(38:12):
of times before we went for arespiratory stay.
He was that way.
And I thought, well, man,I said, he looks like he's
getting sicker.
I need to just makesome decisions.
So I take him out into theliving room and I go through my
medical protocol and nothing'sassured.
Anything like that.
And because of his personality,typically he's either spongy
or really pliable inthat section.
(38:34):
And I go to feel it, and he islike cinder block wall
rock hard.
Wow.
Right where he's like intestineswould be.
And I go, this is not right.
I said, something's wrong.
And in that moment in mybrain, time starts slowing down.
I go, what am I going to do?
What's my next steps?
(38:54):
How am I going to do that?
And I look at my wife and I go,I'm going to get him dressed.
I'm taking him to children'sHospital.
Something's not right.
It was honestly a gut call.
Jim dress came in the van andI do like 90 miles an hour up
to the local children's hospitalbecause I don't know what's
going on.
I don't know how long isI get in there?
(39:14):
I park in the parking deck,and I go to get.
I get this chair, and I goto lift him out of the van.
And he's very floppyat this point, and this catches
my attention.
So I get him in his chair.
I get up to the like the frontdesk of the E.R., and I skip
the line to go to the nurse,and the security guard
comes over to me as if to say,you need to get in line.
(39:35):
And I look at him withoutskipping a beat.
I went, I don't thinkhe's breathing.
I need help immediately.
And the nurse hears me.
She comes over to me.
She looks at him.
Now understand?
I've been in this hospitala hundred times and she goes,
follow me and we go ata full run as fast as we can.
Go back into the E.R.
to a trauma room.
(39:57):
We get in there and I thembecause I've been in
the hospital so much,I unbuckling from his chair.
I put him on the gurney and Iinstinctively back away and hope
they don't let me stay in therebecause he's non-verbal.
He can't talk.
And so luckily for me, there's atrauma room next to this one,
and the doors are open andI back off in there to where
(40:19):
I can see things, butthey have room to do
their thing.
Yeah, well, a group oflike 30 people come in there
and.
And they just like antson an ant hill.
They cut off his clothes.
They immediately intubatein, which puts the tube down
to get air in his lungs.
And the first thing that theydo that catches my attention,
(40:40):
this guy walks over to his kneeand like a drill like drills
important to him justimmediately.
Wow.
And and it's literallygoing into his knee
like the bone.
Yeah.
And my son doesn't even flinch.
And so on.
Later asks him, what did you doright there?
And he said, typicallywhen people come in like this,
when we don't know what's goingon, he said, is it's a way
(41:02):
to get antibiotics into himvery quickly.
And I said, okay, well,they gave him no pain meds and a
normal person, if you drilledinto a bone, they would have
come off the table.
I mean, it would have been soexcruciating, like it
would have been soexcruciatingly painful, like
you would have probablypassed out because you're
(41:23):
you couldn't have mentallytaken it.
So they do that and we're thereabout two minutes and they
immediately start chestcompressions on him.
And I'm seeing this and I'mrecognizing it, but it's
just not registering inmy brain.
The severity of what'sgoing on here comes over to me.
And she goes down to the minute,how long has he been this way?
(41:43):
And I said, plus or minuslike two minutes.
He's been this wayfor this long, goes off,
barks orders.
He comes back to meand she goes, explain to me
this scenario as to why you comein, I tell her, and then
she goes back and barks orders.
They've been doing chestcompressions at this point
for about three minutes ish,and I see him get the I see him
(42:04):
get the paddles out.
They put him on himand I hear me all clear.
And just like a medical drama,it shocks him.
And he raises off the table.
And I'm because of hisrespiratory issues, I'm
very familiar with that much.
That shows the pulse, the heartrate, the oxygen,
all that on it.
And then the shock.
I'm in a good mood and goesright back to what it's doing.
(42:27):
And in that moment I geta little he's not coming back
and it's still the I'm like,I don't get emotional
at this point.
I just in my brain, I go, he'snot coming back.
Well, they were for 45continuous minutes trying to
save his life.
And they finally they get tothat point, comes over to me
(42:47):
and she said I could shock themagain.
But unfortunately I thinkthe results are going to
be the same.
And I said, do what's medicallynecessary or professional.
I said, this is out of mywheelhouse.
They do it.
Nothing changes.
And she pronounces them, I.
As you can imagine, I go off,I have a moment, and it's
(43:07):
literally like, 20s,I have a moment and I
immediately then call my wife.
My wife at this moment who'sworking from home, is thinking,
I'm going up to thehospital, he's getting married.
We're going to be there7 to 10 days as we normally are.
I'm going to come home.
I have to tell my wife and myson's dead on a table, and I
(43:28):
will never forget the soundshe made when I told her that
she had her moment, she regainedher composure.
I said, message your boss.
Leave work, call your parents.
Have them drive up here.
You're not in a state to drive.
You need to be up here.
And I left it at that.
(43:49):
She said okay, and that'swhat she did.
I then called my mother.
I'll never forget her responseand what she said.
Now, later on down the road,she goes.
How soon after he passeddid you call me?
I said, about ten minutes.
And she goes, you were eerilycalm, being only ten minutes
(44:10):
after your son had passed away.
She said you werealmost robotic.
And I said, well, in that momentI had to be because I
had to tell Jennifer, tell you,get information.
And I said, if I hadbeen a quote unquote blubbering
idiot at that point, I said,I wouldn't have been able
to talk to you all.
And I did that.
(44:30):
And then, you know,the care team came in
and all that kind of stuff.
And, you know, she askedif she could help.
And I pointed at my sonand I said, this is going
to sound cold and callous, and Ireally don't mean it to be.
I said, but I need informationright now.
That's what's going to help mein this moment.
And she goes, okay,what do you need to do?
(44:50):
And I literally rapid firedback to back like 20 questions.
I mean, as fast as I couldget them out of my mouth
and she takes a step backand then she goes, well,
let me answer the first oneshe got.
And, you know, she answersall of them.
But it's kind of inthis section.
We were there and people alwaysask me about that day.
(45:13):
What was the hardest thingoutside of them actually
passing?
I said, there are two thingsI'll never forget, I said
as I was sitting therewaiting on his mother
to come up.
I said it surprised me howcold he got, how fast he got
that way.
Like he had just beenpronounced.
It may have been 15 minutesand I wanted to go, like,
(45:34):
rub his hair out of his,his face.
And he was ice cold.
And it that shocked me.
And then the other thing waswhen we finally decided
to leave, and, you know,we're going to go to a funeral
home, that kind of thing.
I had to take all of his cut offclothes, put them on his empty
wheelchair, and we lived throughthat hospital, put it
in our van, and we're 60 milesfrom this hospital.
(45:56):
We had to drive 60 miles home,in literal dead silence.
Yeah, like we were just in shockto get home.
And I told people, I said,those are the two hardest things
I've ever had to do.
Wow.
And, gosh, I am so sorry that itjust to kind of hear you
(46:18):
tell that and to be in the roomand like, you should kind of see
all of this.
And I imagine just thehelplessness in that moment,
as they're carrying, I didn'tfeel helpless in that moment
because the thoughtmy brain was, the people
that are working,these are the best
(46:40):
people possible who, if theywere to save him.
When I realized he wasn'tcoming back to be
working on them because Ididn't have this kind
of knowledge.
And if there would have been,I mean, if I hadn't called
an ambulance.
Sure.
EMT is have a lot of medicalknowledge, but do they have it
to the point of like a hospital?
E.R.
(47:00):
that I don't know.
And even after the fact, when wewalked into the Haiti, our doc
came out of like a little cubbythat was right where she was.
And I stopped and I pointblanklooked and said, look, I am by
no means upset at any of y'all.
I said, y'all did the besty'all could.
I said, yes, this sucks.
I'm had my.
Moments later I said, justbecause I'm in shock
(47:22):
at this point, to be honestwith you.
I said, but thank you for allthe childhood and medical
dramas.
Do not do y'all justice.
And I said, I appreciateeverything you all did.
And I mean, I walked offI, you know, I get they get
affected by this to their humanjust as much.
I just wanted her to know,look, y'all did everything
(47:44):
y'all can.
I never thought y'all would workfor 45 continuous men.
And I knew they weren'tgoing to do 5 or 10, but the war
for almost an hour continuouslyto try to save him.
That just blew my mind.
Wow.
How do you.
Because I heard you mentionedin that point.
So, you know, you'reyou're feeling the shock, which
(48:06):
I think makes so much sense.
And, you know, you mentionedthere I'll have my moment later.
How do you move through thatand move forward from that?
I will say my the first momentI had was like I said, I'm
in his room.
(48:26):
We got into the house.
You can't see it here,but kind of, where
the curtain is on my screen.
If you go to the the otherside of that, there's a corner
in this room.
I will just wheelchair.
And with all of this cut offclothing, clothes on it,
and it has not left that spotin three years.
And when I came in here,I did that, and I kind of
(48:50):
stood by his bed and just kindof stared at it, and it was
just like, out of the blue,the dam broke and it hit me
like a mack truck.
And I had a moment for therefor a while, we knew that we had
to go over to my folks housebecause, like, my whole family
was over there and, you know,my brothers and I were cordial
(49:13):
with each other.
And it's not like we don't likeeach other.
It's just we typicallysee each other on family
functions that kind of like,oh, are we buddy buddy where
we hang out on the weekends?
No, but, you know, familyfunctions were together
all that.
I walk into my parents house andI've never been this way
around my eldest brother,but I saw him and I walked in.
(49:36):
My parents room and, like,my knees buckled and, like,
uncontrollably.
I don't know, I've never beenthat way around.
I don't know what it was aboutthat moment where I was
that way, and he grabbed meand gave me a hug.
And as I was having amoment and, you know,
I went into the living roomand everybody wanted to know
(49:59):
what was going on.
So I was trying to tellthem, but, you know, I get 4
or 5 words.
And then that, like tremblingfeeling started, and then
I get 4 or 5 words and I mean,that was the longest
conversation I thinkI've ever had.
And so that was kind of howI dealt with it.
And, you know, there was justa lot of anger, a
lot of emotion.
There was and there wasa lot of times I wanted
(50:21):
to go out and go outin the garage and punch a hole
through the drywall kindof scenarios, those kind
of things.
And then I'm one ofthose people in in situations
that are on or off the wall orsimilar to this, I have a weird
sense of humor.
And so a lot of my weirdsense of humor was coming out
(50:43):
when I wasn't having emotionalmoments, that kind of thing.
So that's kind of how I dealtwith it. Yeah.
How did you get from that toto the mission of letter?
So, Zachary, can you tell usa little bit about where
that was born from?
Sure.
So I'm a proponent of,of counseling and therapy,
(51:04):
always have been, right aftermy son, literally two weeks
before my son had passed,I had literally finished up
what I felt like was a seasonof therapy.
I called her, I told her,and I said, you know, if I need
you again, I'll get onyour waiting list, that kind
of thing.
And, I'll get back to you.
And so my son had passed and Icalled her, and I said, hey,
(51:25):
I need an emergency session.
I really don't want to talkabout it over the phone.
If you can squeeze mein anywhere, I promise you,
you will understandwhen we meet.
And luckily, she was ableto get me in.
And at that point, I was goingonce a week for a for a very
long while, and probablyabout the A about two months
(51:47):
into it.
I want to say we were talkingand she goes, have you
ever thought about journalingand the irony of my
next statement?
Based on the responseI've gotten since then, is
I said, you know, I don't knowif journaling is my thing.
I don't know how greatof a writer I am is.
My exact words.
And she goes, well, she said,you don't have to do it
(52:11):
right now.
She said, it's more of amindfulness activity to get it
off of off of you.
She said, you don'thave to share with anybody
if you want to.
You can, she said, you know,you can physically
write it down, shreddedor burning or whatever you want
to do with it.
It's more to get it off of youthan anything.
And I said, okay, well,I put that on the mental
backburner for probablynine months after that point,
(52:33):
I started, I resisted, I didn'twant to do it.
And then one day I goton Facebook and I was watching,
like a Facebook reel or a videoor something, and I don't even
remember what it was about.
And something in one ofthose videos struck a chord
with me.
They're related to my son.
And I was sitting on the couchand I just lost it,
(52:55):
like bawling, crying, you know,just ugly crying, you name it.
And it was in that moment that Iopened up a word document
and in proper OxfordEnglish style, I because that's
how my ADHD brain works.
I read it, you know,the day, dear Zachary and I
just verbally vomited on a page,and, like, I was real
(53:18):
into the sense of if I felt likeI needed to write an F-bomb,
because that's what Iwas feeling.
That's what I wrote.
And I did that severaltimes a day for weeks. And,
essentially what hadhappened was I got to know
this female admin of one of thegreat groups I was in, and on
one day I said, hey, do you mindif I post one of my journal
entries?
And before I could literallyfinish it, she goes, yes,
(53:41):
we would love for you.
Do we rarely, if ever,get man in here willing to
open up in this group?
And I said, okay, and I'm goingto go share.
And in my brain I go, no matterhow normal this may be, is it
still the internet?
Am I going to be able to handlenegative comments?
Should I get them?
Because at that point in time,my brain probably wasn't in the
(54:02):
best space and I went,oh well, I'll do it anyway.
And that evening I got amassively positive response.
The best comment I ever gotwas I had this one woman
in the group goes, we'venever met.
Our paths have never crossed,we've never talked.
I've never told anybodyanything.
(54:24):
Deep down how I feelabout the loss of my child.
And she shares your letter.
I, relate to it.
It's word for word, the entireletter.
And she goes, this speaks to me.
And I said, well, I appreciatethat.
It resonates units andinspired by my son.
And I kept doing these lettersfor weeks.
And when you start toget to a point where people
(54:46):
recognize that they think thatyou're good at something,
they start giving you thissuggestions, podcasting, writing
a book and, and all ofa sudden where, you know,
I don't know if I'm in the brainspace for it.
And it was somebody said, well,have you ever thought
about doing a Facebook page?
And I went, oh, what is that?
And they told me, they said,you're not creating
more material.
You're basically copying pastingat this point until you run
(55:09):
through it.
And she said, and they said,you can create a following
that way and go from there.
So that's kind of what I did.
And that typicallyis where I post everything
first, because that's whereeverything started.
But like in the in thepremise of it, I started
reaching out to people in thegrief community and started
getting pointers of whatworked for them or not,
(55:31):
because, like, I told them,I said, I think I've got
something here and I wantto grow it.
And so because ofthose pointers, I really started
to grow, for, for whatI was doing.
And so that's basicallyhow Letters to Zachary came out.
I write letters, I writeprayers, I do memes, I do short
(55:52):
videos, I do, GIFs or just.
I can never pronounce that.
Right.
I do, you know, I do anythinggrief related.
I'm on Facebook.
I'm on Instagram, I'meven on TikTok.
And I never thought I'd beon Tik Tok.
And I've grown to like itjust because I, in my
(56:14):
ADHD brain.
Because I.
So I always randomly come upwith thoughts especially related
to grieve.
I can go on the record a twominute video about a song,
grief, and get people to respondon it.
And so that's why I like TikTokso much, is because it
works with just how mybrain operates.
(56:34):
But, I mean, I, I've evencreated a professional website.
So, I mean, it's and I mean,I've only been doing this now
17 months.
Oh, wow.
Okay.
And, and so I've done that.
I'm also published.
I have gotten published.
It's not a book.
It's actually a coloringbook. Okay.
(56:56):
Well, I think that's a perfectsegue way into our
shameless plug section.
For anybody who is looking forsome of these resources wanting
to connect with you, pleasetell us how we can find
all of these these thingsthat you're offering.
Sure.
For those the ones that areinterested, that want to
get connected with me,you can go to letters to
(57:18):
zachary.com, and Zacharyis spelled Z.
ACH a r y.
I know some people spelled e r yand that'll that. Yeah.
I've got icons for all mysocial media at the bottom
of the page.
I've got, journal entriesof the first full year of grief,
(57:40):
connected to my page as well asmultiple other writings
and different forms.
If you're interested in thecoloring book I just
mentioned, it's like thethird or fourth section down,
you'll see, and the buttonthere will take you directly
to the Amazon page for,I've got an About Me section.
(58:01):
I've got, a lot of the mediaI've been on.
I've got, grief resourceson there.
I've got several differentthings on there to kind of help
people out.
Just kind of in the,in the grief community.
Wonderful.
And as always, anybody who'slistening, we will make sure
those links are inour show notes, so
(58:22):
you can pop down thereand make sure to grab
those links as well to getconnected.
With Jason, decent.
Thank you so much for beingwilling to, not only share
this recipe that I'mlooking forward to trying,
but also for being willingto share your story
in such a raw and unfiltered waythat I think will have
(58:44):
so much value to our listenerswho have maybe walking
in a similar journey or haveexperienced similar things,
or even those who are listening,that maybe you're wanting
to support someone who'sgoing through that, give them
a little bit of insight onmaybe what it's like.
And so thank you.
Thank you so much.
It's such an honor to be able toto have you on today.
(59:08):
We thank you so muchfor having me.
Yes.
And thank you, everyonefor listening.
And make sure to come backnext time.
We'll see you then.
If you or anyone that you knowis struggling with any of
the topics that we discussed intoday's episode, make sure
to check out our show notesfor support and resource.
This you can get help.
(59:29):
Thanks again for joining uson today's episode of
The Real Family Eats.
If you're a parent readyto share your real life
parenting story, make sure toreach out to us and our website
found in the show notes.
And that goes for today's recipesocial media's support
and resources.
All of that can be foundin our show notes,
so make sure to check them outand make sure to follow, like,
(59:52):
share, subscribe, and stayup to date on all things
the real family eats.
I hope you'll join us next timefor more food for thought
and thoughtful food.
Enjoy your eat!
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