Welcome to In the Seams, a podcast by Broken and Mended. And now your host, David Heflin.
Well hello and I want to welcome you back to In the Seams. And I'm very excited today
to have Aren and Trina with us. And I'm going to ask you guys to pronounce your last name
because I don't want to mess it up. So what is it real quick guys?
It's Bahadourian.
Bahadourian. Okay. Well thank you for that. And I want to give a special shout out to
Anna Kowlessar who connected me with Aren probably about a month or so ago. Anna is
the founder of PeopleHope, which is I understand is a ministry that has served its purpose
and they're kind of closing up at this point. But I'm appreciative to Anna and all that
she has done for the chronic illness, chronic pain community. And I'm appreciative for her
connecting us. I want to say to our listeners that we are going to talk about some difficult
things. Of course, that is normally what we do in this podcast. We're always talking about
things that deal with mental health, things that deal with physical health. I want to
add a little bit of a trigger warning. We will also be talking today about grief and
the loss of a child. And so just want people to know that so they're not surprised or caught
off guard by that as we get into this. But I'm going to start a little bit before that.
And I want you guys to, so one of the things we want to talk about is chronic Lyme disease,
which I know Trina that you suffer with. And I want you to tell us a little bit about what
your life was like before that entered into the picture.
Yeah. So I had a pretty normal, I don't know what normal is, but a normal life. Aren and
I had been married for less than two and a half years. And I had moved to the States
from Australia after a long distance relationship. So I was still adjusting, settling into living
in California. And I would say I was a Christian. I thought of myself as a growing Christian.
I had little to no experience with any kind of personal real suffering in my life, I would
say. I'd had a pretty good life looking back on my childhood in teen years. And I would
say I was a bit naive and I thought I was a pretty strong believer at that time. Yeah.
So it was a time when we were still newly married. So all the kind of lightheartedness
that comes with that and then all the adjustments as well. So working through those things.
Yeah, that's where we were. And I was pregnant with our first son at that time.
And I would add...
Okay. So how much...
Sorry, go ahead.
I was just going to ask, how many years ago are we talking about when you were pregnant with
your first son?
So 2011. 2011, I was pregnant with our first son.
2011. Okay.
Yeah.
And I was going to say that I don't think we were kind of weaker Christians and now
we're stronger Christians. I think we were maybe just untested. I think matters of suffering
were theoretical. We knew passages, we knew verses, we knew things about it, but we had
to walk through it in this way. And I think one of the things that was different in that
back then, we were maybe more prone to giving cliche and cute biblical answers to people
in suffering. So that's something that has shifted kind of before and after.
Okay. Yeah. Thanks for that clarification. And let me... Just because I want to make
sure... So I called you Aaron, but I think I heard her say Aren. Is it better to say
it that way?
Sure. Yeah, it's Aren, but either is fine.
Okay. Well, I like to get people's names right if I can. So...
It's pronounced like... Sorry. I was just going to say it's pronounced like registered nurse,
R-N.
That's...
R-N. Oh, okay. Aren. Okay. Yeah, I got it. Yeah. Thank you. So I want to talk a little
bit more too about your life, Trina, and you began to have some severe health issues. And
just for our reader's benefit, I heard a lot of this story on another interview that you...
A couple of different interviews that you have done, which was very helpful. And I know
that you mentioned, you start losing a lot of weight, like drastic amounts of weight
in a very short period of time and dealing with very severe fatigue and things of that
nature. And you were eventually diagnosed with Lyme disease in its chronic form. Obviously,
this is a life-altering diagnosis in situations. So I just wanted to let you describe how your
life changed and a corollary to that. And it speaks to Arren's point that he brought
up earlier, the untested versus tested experience in our walk with God. But I wanted to ask
you how your relationship with God was impacted after you experienced this life change.
Yeah. It's so much. So trying to do it in a more concise way. In 2011, while I was pregnant,
I first started having some symptoms that were very weird, but we couldn't figure out
what was going on. I'd never been pregnant before. All the testing came back normal.
And then after our son Ezra was born, I started to just kind of get more and more worn out
and fatigued. And I was just weak. I was sick a lot, like back to back viruses. And by the
time he was one and a half years old, my health like completely crashed overnight. It was
bizarre while I was leading worship at a women's retreat. And so from that day, April in 2013,
I've never gained a full measure of health since that day. And so I began kind of being
just unable to do normal things like any. Like I couldn't, at some point it was so bad,
I couldn't leave the house. I would try to walk. Like, I mean, I was young and even just
walking three, four houses down the street, I would be completely out of breath, on the
verge of passing out and Orin would have to like quickly get me back inside. So just bizarre.
Yeah, no energy and just really frail like a shell of myself. And so it was really difficult
because basically what happened was very quickly, my world began to shrink. And I was still
relatively new to the country and, you know, trying to still make friends and connect with
people. And so that just died down so fast. And I found myself very alone. A lot of the
time I was by myself at home. Aren was working as a pastor. He was, he tried so hard to be
available for me and to me, but his job was really demanding and it was just, it was a
lot. And so, yeah, my life kind of became a fragment, it feels like of what it used
to be. And I couldn't take care of my then toddler, we had to enroll him into early like
preschool, which I'd never wanted to do. And so at two years old, Ezra starts preschool.
And my day consisted of literally getting him to the door at preschool, dropping him
off, even just walking him to class was like a feat, like an absolute feat. And then getting
back in the car, I would drive home, it was like a four minute drive, I would drive back
home and I would get into bed. I would set a timer for his pickup time from school. And
I would literally sleep the time the alarm would go off. I would drive back to school.
I would pick him up. I would bring him home. They would have fed him there. And I literally
would say, okay, now we're doing rest time in the afternoon. And I would put his mattress
on the ground, I would lie on the floor next to him. And I would knock out for like another
couple of hours. It was just like, it was unbelievable. And so it just felt like everything
just changed. And it just became very scary. This idea of like, what if this is what my
life is going to be from now on? Like, God, how is that possible? Like, what does that
even mean as a young mom? Like as a young wife? Like, I can't take care of my home. I can't take
care of meals. I can't take care of my kid. Like, I don't know what that means, Lord. And
it just doesn't make sense to me. So everything was slower. I was just constantly exhausted.
And I think the physical exhaustion of it was linked to almost just like spiritual exhaustion
as well, like mental exhaustion and just this, like, I can't do anything. Like, I don't even
know what to pray. All I am praying is just help. Like constantly, I felt like from morning
till night, it was just like, please help. Please help. Like, everything is falling apart.
Like, please help, because it's all crumbling. And so I think throughout the long, I was
undiagnosed with severe sickness. So from 2013, it, when I, my health completely crashed,
it took two years for us to get my diagnosis of chronic Lyme disease from that point. And
so those two years were marked with severe anxiety, severe, like, it just felt like there
was a shroud of darkness over us. Feeling like continual, like unanswered prayer with
God, like feeling like we're knocking and it's empty. I think in A Grief Observed, C.S.
Lewis talks about this, this idea of like, but go to God when your need is great. And
this is after his wife has died and he's processing this tremendous grief he's going through.
And he says he's like pounding on the door and on the other side, it's just silence and
worse than that, that a door, like a key locking the door, like the sound of a key locking
the door. And it just, that season felt like that in so many ways. So there, there was
a lot of anger at times. There was a lot of confusion, a lot of questions that seemingly
had no answers. And what was happening, I think to both of us was all of the assumptions,
all of the maybe odd and kind of incorrect ideas I'd had about God or about the Christian
life, they were all coming up to the surface. And it was a lot trying to deal with that
and trying to address that and be like, do I actually believe this about God because
this is true of who God is in his word and in the Bible? Or is this just stuff I've brought
into, bought into because this is what people say about God, or this is what the church
I grew up at said, which isn't necessarily biblical and isn't necessarily accurate.
And so I was really, really wrestling with the goodness of God, like big time.
I think one thing to add when it comes to this kind of wrestling or being in a season
where these questions and assumptions come to the surface, one way to say it is in some
way, it seems our foundation for the Christian life was based more on the book of Proverbs
than on Job. What I mean is, with Proverbs, the righteous will be blessed. And once when
I studied that, I counted about 15 to 16 different blessings the author speaks of for the righteous.
And so you start, if your Christianity is Proverbs only, you start developing this formula
that if I'm righteous, God is going to do his part to bless me. And in this season when
there was unexplained suffering, and okay, we believe God is there, there's no punishment
for sin that we're dealing with. So like, why is he going off script? Like what's happening?
The formula of Proverbs is falling apart. And that's years later when I and we studied
and looked at Job, then it made sense. It's almost like we needed Job and Ecclesiastes
alongside Proverbs. Or to comment on another wisdom literature, the Psalms, I think, is
what gave us words when we didn't have words, especially when it comes to lament.
Yeah.
Thank you for sharing that perspective. Yeah, go ahead.
Yeah, I think what was really hard, I think you said, and then kind of in getting the
diagnosis and everything, I think Aren and I both were praying, begging the Lord for
an answer, for some kind of answer. Like, Lord, can you just give these doctors wisdom
to figure out what is going on? And I think what was in the back of our minds was when
we finally know what it is, we'll be able to treat it. Or they'll tell us, you're going
to die, which I already thought I was going to die. At that point, I was so sick, I thought
I was dying. And it was almost like, at least we'll know. And then getting the diagnosis
of Lyme disease, I still remember the doctor telling me, well, now we know what it is.
And I was like, isn't that really good news? And he's like, no, not really. He's like,
nobody wants to have chronic Lyme disease. He's like, it's not good news because he's
like, there's no cure for Lyme disease. He's like, I can't guarantee you that you'll ever
be better. And I can even say that even if you work really hard and your body does recover,
you can completely relapse again. So he was just like, very, it was really sobering, I
think, just even getting the diagnosis. And so one of the things that Aren kept telling
me that was really helpful, I think that we really leaned on was God's sovereignty and
that there was no rogue tick in the universe. So that everything is under God's control.
And if I had, which we figured out, you know, if I had been bit by a tick years ago, that
God's hand was over that. And the fact that we never knew about it, and I never got treatment
for it and all of those things. And so I think it was a very demoralizing season overall.
I think that's the one word I could use to describe all those years. Even in being diagnosed
and seeking treatments, we, every single treatment that was presented to us, we agonized over,
we prayed over, we were very, tried to be very wise in how we were approaching everything.
And we went through seven or eight different kinds of treatments and all of them failed.
And with all of them, we really sought the Lord and believed that in different clear
ways he was guiding us to that next treatment. And so it was demoralizing. It was demoralizing
for our faith. Yeah. And another way in which I think this season, it just changed or impacted
my relationship with God was it really led to me having to rethink my identity in Christ
and what that really is aside from any ways that I could be useful and of service to Christ.
Like what it meant to actually just be Christ's, belong to Christ and enjoy Christ or rest
in Christ and know that I can't add to my worth in him. I can't do things to be a better
or greater impactful Christian. Like it just, it was very, because I think up until that
point and for both of us, we've grown up in church, we've grown up doing ministry, being
involved in ministry. And it was, we kept saying, we have been sidelined. Like that is what it
felt like, that God just benched us. And so it was a season of having to come to terms
with, okay, like, okay, we're on the benches and this stuff that God's doing here, like
God's doing a deep internal surgery here on the benches. Yeah.
Wow. You know, I think it is, you know, such a transition in a way of thinking when we
go from the idea that measuring our worth or value from what we can do and to think
that that's how God also evaluates us. Instead of what, you know, we see when Paul talks
about boasting in our weakness so that the power of Christ may rest in us. But to truly
experience weakness and to truly experience being unable to do what we think we want to
do or ought to do or even what we think God wanted us to do. I mean, it's a humbling experience.
So I appreciate you sharing that. I was curious during this time. So we're talking like 2013
as when was the diagnosis?
2015, April.
2015. So really, your health went downhill in 2013, kind of permanently, right? I mean,
in the sense of where you said you never regained a full measure of your health and in 2015
you were diagnosed. So in that two-year window of time, was there anybody in your life that
was able to come alongside you and to say anything like, well, we went through something
similar or we kind of understand what you're going through? Did you feel totally alone
in this?
I think I felt pretty alone, I would say. I mean, I think Aren was the only one who
was there and he hadn't been through something similar, like really there. And I had a few
friends but again, I had moved here pretty recently before that. And I think my friends
didn't really know me.
From Australia, right?
Yes, yes. So all my family and other friends were all back in Australia. So no, I did feel
really alone. I think where I kind of found some community, like a chronic illness community
of faith of some kind was more online actually on social media. I connected with some women
on there and that was really helpful because I found people who were going through similar
things and wrestling with the Lord through it as well. And that was really helpful. And
then again, once I actually got diagnosed in 2015, I really found women on Instagram
who were going through Lyme disease, who were believers and just really connected with a lot
of those women.
Well, it's good to hear that you're able to find some community and I know that being
able to find those online is such a valuable asset that we have in our time that we're
able to do that. Well, now you guys, ministry did come out of this ultimately and you guys
started a ministry called Remain. And certainly I recognize that not everyone that goes through
something like you've gone through chooses to start a ministry that's going to be a blessing
to others. So tell me, I want you to tell me a little bit about how you decided to start
Remain and what your aims were for that ministry in the beginning and at its inception.
Yeah, that's a good question. When it comes to ministry, the before Remain, let me just
make two quick comments. The hope or the assumption of ministry leaders is that we do ministry
from a place of strength, where our cup is full and we're able to pour into other people.
And we rely on our strength, we rely on our wisdom, we rely on our training. This illness
caused me now under, you know, God's providence and wisdom to operate purely out of a place
of weakness. So I can clearly count the number of times I would be in church Sunday morning
and I had nothing, I couldn't sing. Or I would lead, you know, college ministry and I would
be crying during worship. And there were times they kind of huddled and prayed over us. But
I operated out of a place of exhaustion, of like desperation, neediness. So that completely
was a shift in my understanding of ministry. And things like Paul in 2 Corinthians, which
is all about weakness. You know, there were things that I just hadn't really considered
before, but in our weakness, he is strong. The other thing I would say about ministry
in a season of sickness is that I wouldn't want anyone to feel pressure that they should
keep serving. There is a time of rest and there's a time of serving. There is a time
to pull away, for self-care, to heal, to be restored and all of that. So I think wisdom
is needed for the individual who is in such a situation and says, no, no, no, but like
I need to keep serving. But for our own story, it was in the spring of 2020, I was finishing
a small group that was just helping me understand my calling and spiritual gifts. And when I
was asked about what part I want to play in God's kingdom, just the word remain came
to mind. And I said, I want to remain and I want to encourage people to remain. And
I just kind of left that until a few months later, it came up in conversation and Trina
had her own aha moment and she said, what if we start something and we would do this,
this and this. And that launched us into a season of praying and seeking counsel from
others and even speaking with another big missions organization about potentially working
under them. But it kept coming up and there was this sense of not that we have to or we
should we're obligated, but something kind of clicked in our hearts about where God wants
us to be. And I think we had shifted in such a way in our mindset, in her story of healing,
and we were able to think about others and care for others. And so even before remain
became a thing, we already had all these ideas of what we can do. So we ended up launching
under our church, Armenian Christian Fellowship of Orange County in September of 21. And our
desire was to come alongside people in suffering to encourage them to remain in Christ. And
as we thought about our values, for example, like what are we about? What's important to
us? We wrestled with that for a while. But there were four values that we realized were
already part of our conversations at home and part of our story, part of our journals
and for years. Number one, both and it's not you have like doubt or you have faith, right?
You lament or you rejoice. It's a both and number two, but God, we believe but God is
the greatest two word phrase in the Bible. It's a story of grace and hope. How much more?
We see that phrase a few times like in Romans, you know, if he saved us from sin and made
us children, how much more is he for us in Christ? There's this assurance, this abundance.
And finally, already not yet. We believe that Jesus is King already, the kingdom is here
already, but not yet fully and finally. And so we're living in this overlap, in this tension
that we have life and hope now, but we're not there yet. The kingdom is not complete
yet. And so while we have life and hope now, we still have suffering and sickness. So sickness
or sorrow doesn't mean that Jesus is not King. You know, we're able to look at it very, very
differently. So that the framework it provided already not yet, how much more but God and
both and.
That, yeah, thank you. I really appreciate that perspective. And I want to mention for
our listeners that we will put the link to your ministry remain on our in the show notes.
Now I wish you know that that was where the story kind of ended. And I know that it's
not. So I want to talk about something, of course, very difficult. But after you started
Remain, not long after, as I understand it, another heartbreaking struggle entered your
life. And I was wondering what you could share with us about Isaiah Orion's and I understand
correctly call him Ori, a little bit about his story. And maybe the best way I could
think to phrase a question on this was how did you hold on to God's hand? You know, throughout
that that tragedy and that story?
Yeah, we so I think it was seven months since we launched the ministry and we were pretty
sure we're done with our own suffering. We graduated. We completed the cloud. And now
we can do ministry and seasons of anxiety, fear, depression, those we know, I guess the
one area that we hadn't experienced was sorrow and grief.
But we had but not not not to that extent, not. I remember even just telling Aren when
we were launching remain that an area that we didn't really have experience was the real
grief of losing someone really close to you. Yeah, I actually said that. So that's just,
it just feels so bizarre. But yeah, so seven months after we started our ministry, we found
out I was pregnant with our third son. And yeah, we were really excited. The his big
brothers were thrilled. And we found out at our 12 week ultrasound appointment, that things
did not look okay on the ultrasound. And at that point, we didn't know if he was a girl
or a boy yet. We hadn't. And they were still waiting on like, the genetic testing. But
they said, even if it comes back clear, this baby is not okay. The doctor kept not the
doctor, it was not the doctor, it was the ultrasound tech who should not have been doing
that. But he kept showing us, Oh, look, did you see what's wrong with his brain? Let me
show you his brain again. It was just awful. And so we had this earth shattering 30 minute
ultrasound appointment with the technician walked out. And we were just like, I don't
know, I have never been more just shell shocked in my life. And yeah, it was a grueling
journey. So at 12 weeks, we found out that it seemed like he had trisomy 13, which is
basically, so there's Down syndrome, which is trisomy 21. And then there are trisomies
that are more severe and cause more issues in the body. And so then it becomes trisomy
18 is the next most severe one. And then more severe than that is trisomy 13. A lot of babies
with trisomy 13. Basically, in the medical world, all babies with trisomy 13 are considered
incompatible with life. And parents are given just the option to terminate basically. And
RN and I will aren't at the beginning of that appointment when the doctor was like, yeah,
this baby's not okay. Not doctor. When he's the technician said everything's bad. It's
awful his heart, his brain and, and Aren said, we're not we're not talking about termination.
We're not saying the word abort, like that's just not where we're going. And so he said,
Oh, that's fine. Well, I'll have the doctor wait for the results and get back to you.
And so the doctor so it was this two week of like, what is happening? And then the doctor
calls us at 14 weeks, and tells me the results show that your baby does have trisomy 13.
And as a footnote, he's like, Oh, and it's a boy, by the way. And so and so we I don't
know, I don't know, we carried Isaiah, we named him Isaiah, Orion. Isaiah had always
been my favorite boy name. And it means God to the rescue. And in the Jesus storybook
Bible, we would always read the Jesus storybook Bible to Ezra when he was little. And when
Ezra was two and a half one day, he stood up in the public restroom on the change table
and he starts dancing. I'm really sick with Lyme disease. At this point, he starts dancing
on the change room, changing room table. I'd been in a wheelchair all day at a theme park.
I don't even know how but I was literally on a wheelchair the whole day. We're in the
change room and he starts dancing and singing. My brother is so silly, so silly, so silly.
And I said to him, Ezra, you don't have a brother. And he said, Yes, I do, Mom. And
he's named Isaiah. And I said, What? And he said, Yeah, Mom, because Isaiah means God
to the rescue. And I just like completely burst into tears. And Ezra was praying, Ezra
was praying from the age of two and a half for a baby brother. And God answered that
in Kai, his brother, who was born seven and a half years when Ezra was seven and a half
years old. And who's a miracle in and of himself. And Kai's name means and, and God in Greek
or but God. So, um, so Isaiah was like, always on his way to us, it feels like. And so, yeah,
Isaiah means God to the rescue. And Orion is related to the constellation in the sky.
But the reason is because in the book of Job, it talks about Orion a couple of times. And
in Job, in Job nine, verses nine and 10, it says the God who made the Orion and the fair
and the Pilates and it talks about those and then it says, who does great things beyond
searching out. And so we just felt like the mystery of Isaiah, Orion and his story and
all of that, we just felt like it was the perfect name for him. And then, and then we
just called him Ori as a family. That was his nickname, because one day I think I was
playing with the name Orion and then I was like, Oh, Ori sounds kind of cute. And I looked
it up and I saw that in Italian, Ori actually means golden and it means my little light.
And I was like, Oh, so Ori means my light. So affectionately we call him Ori. And so
Ori story did not look at all how we hoped and prayed and begged to the Lord for about
five months after we got the news about his condition. I don't think we weren't disbelieving
the doctor. So it's not like we had this blind faith that the doctors are wrong and everything's
going to be fine. We believe the doctors, we were seeing the ultrasounds, we were there
at every appointment. I think there was always a sliver of hope that what if God heals him
miraculously, like we're not saying it's not real and it's not happening, but God is God,
God is sovereign. God can do anything he wants to do. So we always had this hope that God
could make all the sad things in Ori story untrue. And that was not, that was not God's
plan. When you asked us how we held onto God's hand in that tragedy, I think we did.
I think we would say, yeah, we didn't hold on to him. He held on to us. And that's something
that I've shared in the past referring to our season of suffering. And I would tell
people God's sovereignty is no longer a nice bullet point in a book on the shelf. God's
sovereignty is something we experience or it's something that's holding on to us rather
than us holding on to him. Five and a half of the most horrific, anticipatory, grief
filled days, knowing, sorry, months, no, knowing that we're losing him. The time is going down
it's one month left, it's one week left, it's a few days left and there's nothing we can
do to stop that. There was something horrific about that. Especially the last Sunday, it
was Ezra's birthday and I actually baptized him and Tuesday was going to be Ori. But just
being at church two days before our son's death, I wept through most of the church service
during worship. And I was just telling someone just a couple days ago, it meant so much that
people in church gave us room and permission to just cry. They came, they stood next to
us, they hugged us, they listened. It felt so good to have a community walking with us
like that. As far as what did we hold on to? There was a few things that I feel like kept
coming up. Number one, Jesus is the high priest who intercedes for us. So Jesus as the high
priest not only does the work of atonement on the cross, he pays the price, but the priest
also intercedes and now that he is ascended to heaven, what's he doing at the father's
right hand? He's interceding for us. He's bringing our needs before him. And so when
you have those moments where I have nothing to say, I don't know what to pray anymore.
It was comforting to know that he knows my heart. The other thing that I found really
comforting is that the resurrection is coming. Messages, passages, truths about Jesus, destroying
death, Jesus conquering evil, Jesus rising again in victory. All of that was life giving.
And I got so flustered that I would keep this as an Easter topic one Sunday in the spring
of the year. It became, honestly, resurrection became a daily issue. Daily I thought about
the death and resurrection of Christ. And that was really life giving. The other thing
that I would say is the humanity of Jesus comforted me. I studied the story of John
11 in Lazarus and when it says that he was moved in spirit and he wept, that wasn't like
a sad Hallmark movie where he's just crying because he was going to raise him from the
dead anyway. But as I studied from several books, I looked at the Greek, moved in spirit
means he was fuming in anger. So almost to say he was angered at death. And I think that
response did something for me. As it says in John 11, when Jesus saw her weeping and
the Jews who had come along him along with her also weeping, he was deeply moved in spirit
and troubled. So having Jesus like be angry with us and for us and weep with us, that
was something else that sustained us during that time. But it's interesting, we talked
about this yesterday. We're doing a seminar tonight at a church in North Hollywood and
they don't know us. So we're going to share a little bit about our own story. But as we
looked at our notes, we realized that there's nothing there about Ori yet. We haven't updated.
But he's not a footnote. He's not a by the way, I feel that we need another maybe two
more testimonies that we need to write. So that our journals, our letters, what we shared
at the celebration of life service, there's a lot that we want to write down to honor
his life and memory. And there's a lot that we need. It's stored up in our hearts that
we want to say to people who are either given a diagnosis or who are in grief over the loss
of a child. So that's something for another day definitely.
Yeah. Yeah. I think it will mean a lot to a lot of people. Yeah. Go ahead, Trina.
No, I was just going to say I do remember like walking out of that first appointment,
like shell shocked. And I in my heart, I said like, God, like now you have completely broken
me. That was kind of my like, this is it. Like I thought, I just can't believe this
is your plan. And I really believe in my spirit at that moment that his response
was I am breaking you, but I'm breaking you open. I'm not breaking you down. And I'm still
working through what that means. But even from that very beginning, I know that God
was present with us in that story. I know that God was near us as we walk through Isaiah's
short life. And so I count I count Isaiah's life from when I was pregnant with him. So
I try to remember all the stuff that we did that summer before he was born as a family
that he was present at and he was involved in even though he was being carried in my
womb at that time. And so because we knew that likely if he did make it to term because
of the challenges and on the ultrasound, some of the stuff they found they so his case was
extremely severe. So try to me is a spectrum. And you can have a very mild case I found
on Facebook, I found a 39 year old man with trisome 13 full tries to me 13. And I
was like, Oh, my God, like, just, I need to meet this man. But just so it's a spectrum.
But Isaiah's case was extremely severe. And we knew based on that I researched everything
I researched every condition he had. And the longest I had found a baby live with his specific
condition with full intervention, like with full intervention was nine hours. And so I
knew that he didn't if everything held true on ultrasound, and God didn't intervene in
miraculous way to heal him, I knew that his time was really limited. And that is how it
played out. And I mean, even till the end, I told the head of the NICU, we had an amazing
this was the Lord just watching over our entire experience with the hospital in California
and with the staff, and we had an incredible experience, a great team of doctors and nurses.
And I even said to the head neonatologist that if he came out, and for some reason,
his diagnosis did not hold true, or it was less severe than what he thought they needed
to fully intervene and just do whatever they could. And I said, You have to promise me
that. And like, and so then, I remember when he was born, it's dead quiet in the a lot,
and he came up to me and he put his hand on my shoulder. And he said, Mom, it's as we
expected. And he was like, hearing. And so Isaiah lived for three hours. I say lived,
but he was kind of dying for three hours, in the sense of by the time they got him out,
his heart rate was 40 beats a minute. In the last hour of his life, his heart rate was
like five to 10 beats a minute. So like he was barely alive. He was not moving, not responding.
He never cried. He never made a sound. He made one attempt to breathe that I saw, which
wasn't he didn't he Yeah. And so it just but in those three hours, he was so loved, like,
he was just treated with such dignity and respect. And we had one nurse who would just
talk to him while he was alive. And even after he'd passed, Mr. Ori, my baby boy, like just
so sweet. And so yeah, I believe that even in his short life, he experienced nothing
but love. And then he went from our love into God's complete, perfect love forever. So it's
pretty good life. It was towards the end, our close friend, our pastor and his wife
were there. And we asked him to just pray. So he put his hand on Ori and he prayed and
then he finished with the Aaronic blessing. May the Lord bless you and keep you. May the
Lord make his face shine upon you and be gracious to you. May the Lord lift up his countenance
upon you and give you peace. And right then, Trina said, he's starting to feel cold. And
that's when we knew he had passed. So Aaronic blessing is very meaningful. But what stands
out to me is right in those moments, Trina said she experienced a heavenly peace. The
room was quiet. We were at peace. We knew where Isaiah was. Another thing that I have
to say is that before leaving a few days later, the social worker came in and just said that
this has opened up opportunities for me to talk about Jesus with others. People on staff
and the admin and the social services, they're asking questions. Who is this couple? What
is their faith? And she said, you need to know Ori has planted seeds of the gospel in
this hospital. That's what we heard as soon as we were leaving. And one of the prayers
we had prayed for a while was God, his short life seems to have no purpose. May there be
purpose. Or may we be able to see a glimpse of that purpose in some way. And so that comment
from a fellow Christian to hear that there's conversations about Jesus going on, that did
something to our saddened hearts.
Yeah. I think along those same lines, something that you heard God speak to you, Trina, if
I got this quote right, you can correct it if I don't, but do you trust me to write him
a different story? Is that right? I don't know why, but that particular question is
just, the only word I could describe it was soul piercing. It just makes you think about
everything differently when it comes to value and worth and story and what stories look
like from God's perspective. So I appreciate you. Obviously that's a very intimate moment
between you and God. And I'm very glad that you shared it though with others because I
think that just a question has a fruit in it. But I wanted to ask you, how does that
question put into perspective how God values our lives and our stories differently than
we see in the world at large?
Yeah. I think that question, I sat with that question in the middle of the night for hours.
And I think what kept coming to me as well with that question was, you trust me to write
him a different story and different is not less than Trina. Different is not of less
value. And so that I think was very comforting because I kept looking at what was laid before
me in walking through my son's life, my son's short life with him. And it just felt so unfair.
It just felt like he would be snuffed out before he had a chance to do anything. And
so I think what was the way, I don't know how it puts into perspective how God values
our lives, how God values our stories. Almost that if God is really God, if God is really
Lord over everything he has made and over the stories of everything he has made, then
can I trust him that his story, that person and the next person and this friend struggling
with this issue and that life that I believe got cut off too soon, can I trust that God
is over that and that in Christ for his people has good plans for their story, even if it
doesn't look like how I wanted it to look. And so I longed so much for this life that
I wanted for my third son, a story of health and coming home and growing up and being the
baby brother of the family and kindergarten and friends and just all of those things.
And God had other plans completely. And yet I need to believe that in that very short
period of time that Ori completely fulfilled the story that God wrote for him on this earth.
But that would be so depressing if he wasn't made for a much bigger and most spectacular
story and a story that's playing out for all of eternity. And so I think that is what keeps
me going in that Ori missed the prelude, like we're living the prelude, he missed it, but
he didn't miss out on the main act. He's there. He's actually there way before we are. And
so I think also kind of putting into perspective how God values our lives, another verse comes
to mind with us. So I had to have a C-section because of reasons outside of our control
and with Isaiah. And so they came in and told me they were going to wheel me into the O-R
and I was just like, I cannot do this. Like, Lord, I cannot go in there. I have my son
be born to die. I just, I can't, it just was so difficult. And at that exact moment out
of nowhere, seemingly nowhere, 1 Corinthians 1, 27 and 28, the entire passage just, it's
like someone just downloaded it to my mind at that moment. I don't remember when I'd
read it last. And it says, but God chose the foolish things of this world to shame the
wise. God chose the weak things of the world to shame the strong. God chose the lowly things
of the world and the despised things and the things that are not to nullify the things
that are. And God just, I feel like spoke those words over me. And I stood up and I
said to Aren, I need to go and have this baby. And they came back in with the wheelchair
and I said, no, I need to walk to the O-R to have this baby. And I walked to the O-R
and to this day, I have never in my life felt such purpose or such honor in anything that
I have ever done in my life. And so I believe it was an honor from the Lord to get to carry
my son who died like pretty much right after he was born, to get to carry him, to get to
birth him was a gift from the Lord. And the way that it gave me such peace and such strength
and such purpose, that's nothing short of God doing that. That was not me walking in
my own strength. But that verse has just stuck with me, that one Corinthians passage of,
I don't know what God is doing, but Isaiah's life is a weak thing and a lowly thing and
to many people, a despised thing. And right after I gave birth to him, shortly after it
was a thing that was not. And yet God who is sovereign and good and kind is able to
use Isaiah's story, Isaiah's life, even as a thing that is not to nullify the things
that are against the darkness and the powers at work in this world. I believe that. I don't
know what it looks like. I don't claim to, but God does, God knows. And so at some point
it's this, at some point, and I think we all get there in different ways, and I think sometimes
we get there and then we backtrack and we have to get there again. It's just this trust.
It's this trust that he knows what he's doing. I don't have it figured out. I don't even
need to have it figured out. It's okay. Yeah.
Thank you. I mean, that's an incredibly, an incredible, powerful testimony to our creator
and a Redeemer and the wholeness of his work and our lives. And wow. So I thank you guys
for your willingness to be open and to share from your story. So if I'm remembering correctly,
it was, was it October 2022 that he was born?
Sorry?
Oh, I said, was he, was he born in October 2022?
Yes. Yes. October. Okay.
18, 2022.
Okay. So just kind of letting people have a sense of the time, you know, the time range
really for all of this, from going all the way back to the beginning of your Lyme
disease and then of course, with Ori. I, we need to wrap it up here. I do want to
say one thing we didn't get to talk about, but I want to at least mention it for our
listeners. And I will put a link to Able Speaks in our, our show notes. It's my understanding
that ministry really helped, helped you guys and specifically focuses on, if I got the
terminology right, life limiting diagnoses and you know, and so what that could be extremely
meaningful to people that are, they're going through that. So we want to make sure people
know about Able Speaks and, but anything else you'd like to say about Remain or how people
can get connected to Remain or how they can even help with what you're doing?
Just a real quick thing. Yeah. About Able Speaks, because I don't want to not mention
them. Yes. They, they specifically focus on prenatal life limiting diagnosis. So anyone
listening out there, or if you know someone who is walking through or has walked through
a life limiting diagnosis with a child that they've lost, reach out to them because they're
pretty phenomenal at what they do. And it's a very specific ministry, but they just offer
like a mental couple to walk with you and they send keepsakes with your child's name
on it and they do a retreat for families who have lost a child. And so we got to participate
in those things and it has been an immense blessing, not just for us, but also for our
living children. So yeah. But coming back to Remain.
So our website is RemainWithUs.org and on social media, especially Instagram, they can
find us at RemainWithUs. With Remain, we have our podcasts. We have a podcast just called
Remain where we share our story over 30, 30 episodes. I also have a podcast called Honey
and Gold where I'm teaching through scripture that you had commented on earlier. And I have
three volumes, scripture, providence and lament. And I can share more info about that if someone's
interested. We also have a few small groups that we host online. We also do a few seminars
on suffering, but also on training Christians to help people in suffering. So if there's
a church that would like to kind of connect and partner with us, as far as following Remain,
if anyone would like to receive our newsletter to get some updates, they can send out an
email RemainWithUs at gmail.com. But also on our website, there is a place for giving and
they can donate or become either a one-time gift or a monthly donor. And that would be
just a huge encouragement for us to do what we feel God is calling us to do in this area.
So RemainWithUs.org and you can click under giving.
Okay. All right. Well, thank you for sharing that. We'll make sure that is all in the show
notes as well, all the different links that we have talked about, including to your podcast.
And I'm very encouraged by your ministry. I'm also encouraged by the fact that it offers
something for people who want to do better about helping others that are going through
these types of these type of ordeals that you've gone through. Because, you know, sometimes
especially like you talked about earlier, if you've not gone through that, that sort
of thing before, and you've been untested, it can be very difficult to know what to do,
what to say. And I know that's not always the point, but to have some kind of equipping
some kind of orientation to how you can really help people. I think that is a may not be
unique. There may be others that do that, but I wasn't aware of any. So I'm just really
thankful that you guys are offering that. And I just want, I want people to really check
it out. And so we're going to go ahead and end this particular, you know, conversation,
but I want to thank everyone for listening. I'll also remind you to go to BrokenAndMended.org
and check out our support groups, which are going to be getting underway again, you know,
particularly for people with chronic illness and chronic pain. So things like chronic Lyme
disease, those will be starting up again this fall. And there's also ways which you can
partner with us there as well. So thanks for listening and we look forward to seeing you
next time on In the Seams.