December 30, 2024 • 41 mins
"We followed her lead. And so there was a lot of laughter and there was a lot of beauty." -- Jessica Fein
Read the episode transcript here: https://app.swellai.com/t/tp_01JG2GNT8VS6BJTW0VGKSK3 PVA
EPISODE SUMMARY:
In this episode of Unraveling Adoption, I had the privilege of speaking with Jessica Fein, an adoptive mother and author of the memoir Breath Taking: A Memoir of Family, Dreams, and Broken Genes. Jessica shares her family's deeply moving and complex journey through adoption and the heartbreaking experience of losing her middle child, Dalia, to a rare genetic disorder.
We began by discussing Jessica's family's path to adoption, which was initially rooted in a long struggle with infertility. After years of trying to conceive, Jessica and her husband decided to pursue adoption, ultimately leading them to adopt three children from Guatemala. Jessica eloquently describes the joy and chaos of raising her children, but also the challenges they faced when they began to notice developmental issues with Dalia.
As Dalia's health declined due to a rare mitochondrial disease, Jessica opened up about the emotional and practical challenges of caring for a child with a degenerative condition. She shared the struggles of navigating the medical system, the frustration of being more knowledgeable about Dalia's condition than some healthcare providers, and the profound love that persisted throughout their journey.
Throughout our conversation, Jessica emphasized the importance of finding joy amidst the sorrow and the lessons she learned about control and certainty in parenting. She highlighted that while we cannot control the outcomes of our children's lives, we can choose how we respond to the challenges we face.
Jessica's story is a testament to resilience, love, and the complexities of adoption. I encourage listeners to check out her memoir, Breath Taking, and her podcast, I Don't Know How You Do It, where she continues to share stories of families navigating unimaginable circumstances. Thank you for joining us in this heartfelt discussion, and I hope it resonates with anyone touched by adoption or facing similar challenges.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:02):
Welcome to this episode of Unraveling Adoption, an intentional space to
delve into adoption's complexities together. I'm Beth Syverson. I'm
an adoptive mom of an engaging and bright 20-year-old son, Joey.
I'm walking beside him while working on my own personal growth and healing. I'm
also a certified coach helping seekers who want to move forward in their life.
Joey and I are committed to helping anyone impacted by adoption, and we want to
(00:24):
help the general public understand adoption's complexities better too.
I don't often have other adoptive parents on as guests, but
this episode's guest, Jessica Fine, has a very unusual
story to share with us. Jessica Fine's memoir is
called Breathtaking, and it is certainly that.
Her memoir and her story is breathtaking. And in
(00:46):
it, she writes eloquently about the love of her family that
was formed by adoption and the loss of her middle child,
Dahlia, to a rare genetic disorder when she was 17. So
welcome to Unraveling Adoption, Jessica. I'm so glad you're here.
Yes. And first, oh my god, I'm so sorry
(01:07):
about Dahlia's death. And your family's
story is just gut-wrenching. And I just want to acknowledge that right
at the front. Like, ugh. Ugh, yes.
And we are all, all of us listening, all of us at Unraveling Adoption
are just holding you and your family in our hearts. And we appreciate you sharing
your story so we can learn from your experiences and
(01:30):
understand, you know, like we say, the complexities of
adoption. And your life is complex and
then you add adoption onto it as well. So you've got like many
complexities happening. Many, many ways.
You got the hard version of this game of life. Yeah.
Well, why don't you just tell us about your family's adoption story before Dahlia,
(01:51):
before you knew she was ill. Just tell us how you all became a family in the first
Okay, great. I'd love to. Thank you again for having me. Well,
first of all, we dated for 10 years before we got married. So
we met in college and we, I guess, really wanted to be sure,
but we waited 10 years and we
got married in our late 20s. thought
(02:13):
we would become parents the quote unquote conventional way.
And we started down that path and our efforts
became increasingly creative as, you know, the entire Boston scientific
medical community became involved with us as
we went through our fertility journey. And we spent five years
on that journey. And boy, there were a lot of twists and
(02:41):
Yes, absolutely. In fact, there was a lot that
was in this current book that didn't end up making it in, but yeah, that's
for sure a book in and of itself. And so what
happened was around year four and a half or
something of that journey, we decided to pursue adoption
simultaneously. And during that time, so
(03:04):
we were in our kind of final throws, our last attempts with the
gestational carrier and the whole thing, but we were also beginning to research
adoption. And we started to really fall in
love with the idea of adoption. And the more we
learned about it, the more we felt that that was the path for us.
So even though we were still doing the fertility stuff, it
(03:25):
became so much less weighted, so much
less gruesome, because it was like
this thing we were doing on the side. And we loved the
idea. At the time, what we thought of was adoption
is a certainty. We know we will end with
a child. And I remember it felt so freeing to
(03:47):
me to say, OK, whatever happens, I know for
sure by 35 I'll be a mom. Because all
these years before, it was like, is this going to work? Is that going to
work? Oh, it's working. No, wait, we lost. You know what I mean? And so this idea that,
OK, something is in our control. And it's so funny to me
because really nothing, of course, was in our control.
(04:08):
But all of a sudden, it felt like we were taking control because we were making this
decision that was going to end with a child. We knew
I can really relate to that because we also struggle with infertility and
it's such a numbers game statistics and how many follicles and oh lord,
it's so terrible. It's just, if no one's gotten through
(04:29):
infertility, it's brutal. It's really brutal. And
then no one in the infertility community helps you with
your grief if you decide to stop that path.
They're not saying, oh, well, let me help you with that. They're like, no, please come
And all the grief along the way, I mean, it is the ultimate roller
(04:50):
coaster. You have to believe every time is going to
work, otherwise you can't do it. So you believe that every time and
then you're disappointed every time. And then, you know, for those people who achieve
pregnancy, but then they lose the pregnancy. I mean, for us again, you know, we
just kept getting more and more complex with what we were trying and it
Yeah. One of my future books is going to be about that whole thing and
(05:13):
how it's not serving parents. And especially it,
it really harms our adopted kids too, I
think, because we didn't, I don't know about you. I didn't deal with
my infertility grief until like now, 20 years
later, and it really affects our kids. And so
anyway, that is one of my soap boxes I want to get on soon. But
(05:33):
I get it, and I get how, wow, adoption. There are so many kids
out there that need families. OK, this is going to work. And
there's a sense of control, of certainty. And
I can totally understand that as an adoptive parent. Like, whew,
this will work. This will work. OK, so go on with your story.
So we felt like, you know, and what
(05:56):
I say in the book is, you know, never mind that we were planning on intertwining ourselves
with the family across the world that we didn't know. And, you know, we
were like, we've got this, we're in control. Because once we
decided to adopt, first of all, we became so
enthusiastic about it, as I mentioned. And we also decided
right away that we were going to do international adoption. That
(06:17):
was something my husband and I really just both felt in
our gut. And it's interesting when the two players involved
agree so dramatically or so powerfully, you
don't really need to examine why, right? It didn't matter. We both agreed.
We knew that's what we wanted to do. We were doing it. And we weren't really wed
to any one country over another. We explored them all. I had the
(06:38):
huge spreadsheet, you know, all the different characteristics in each different
country. And ultimately, we landed on Guatemala because
on the spreadsheet that I had made, there were the most checks in the columns that we
were looking at, right? And we wanted children who had
been in foster care and we wanted younger children and so on and so forth. And
again, any little, little seed of perceived
(07:00):
control is something we were raising our hand for at that point. So
we chose Guatemala. And of course, then
there was a lot happening politically. And
we were matched with the child who became our
eldest. And we found out about that
child at nine months old. Now, I had this whole
(07:23):
thing in my mind that we were going to have an infant because there
were a lot of infants available. And then everything
shut down. So we're now committed to this child in
our heads and our hearts, you know, but it was not happening.
I mean, time was going on and on and on. So we ultimately brought our
(07:47):
That was a long night. Yeah. Between nine
months and 15 months. So yes, that was a long time when we were sending presents
and we were writing letters and the whole thing. And at the time, you
were not really meant to go see the child
ahead of time because especially
at that age, you know, you'd want to form an attachment and then
(08:08):
you'd leave. So it just didn't make sense. So we brought our
first home at 50 months and then we were on a roll. We were like, OK, we've got
this. So we did another two years and then another two years. So we
ended up adopting three children. Our final one
was in 2007, right before the Guatemala adoptions shut
down. I mean, like he came in right at the very end and
(08:29):
we had our three babies. And I came from three. My husband came
from three. We always wanted three. So we thought, okay,
Exactly. Exactly. Yeah. So we
had a few blissful years of, you know, baths,
bottles, and bedtimes. And, you know, the chaos that
(08:53):
we had sought for so long of having a bunch of little
ones at home. And then when our
middle daughter, our middle child, Dahlia, pretty early
on, we brought her home at six months and pretty early on, we started
to suspect, or I started to suspect, I should say, that
something wasn't right developmentally. She was having
(09:14):
trouble with language and she was a little wobbly and just some
different things. And, you know, the mama instinct kicks in
and I called an early intervention. And they
came to the house and they played all the games with her and did all the things and ended up
saying, she's fine. She's on the lower end of average. She'll catch up.
(09:34):
Doctors are saying she's going to catch up. Right. Exactly. We don't know what happened in prenatal. We
don't know what happened before you got there. Give her time, give her time. Okay. But
things didn't improve and I felt they were getting more pronounced. So again,
brought early intervention into the home. Same thing. Although they
were a little less psyched to be at the house time number two, you know. And
(09:54):
then I brought them out a third time. That time I had to kind of beg them to
come out. And the third time they said, everything's fine.
And so this is what I was hearing from doctors and this is what I was hearing from early intervention.
And, you know, I think so many parents can relate to this, no matter how you came
to be parents, when you feel there's something that's wrong, and you also are
kind of self-conscious. And my being that overly anxious
(10:17):
parent, and for sure I had waited so long to become a parent, I
felt I could have easily been just overly anxious. But
ultimately, by age four, the doctor agreed
that we could do a hearing test. Of all things,
because our issues had to do with speech and balance, it
was reasonable to think maybe it's something hearing related. So
(10:41):
that was our first diagnosis. Dahlia was diagnosed with mild to
moderate hearing loss. And this was a condition that
would be fixed with hearing aids. Great.
Except that I will say, it's funny now
with everything we've been through at the time, I was like, oh my God, hearing
aids, you know, and I just, I look back at that version of
(11:02):
me now and think about how naive I was, you know,
because I thought this was such a big deal that she was going to
need hearing aids. But in any event, she got her purple sparkly hearing
aids. She was over the moon. She could hear. But there
was this big question. Why does she have the hearing loss?
Right. Was there a virus early on? Did something happen early on?
(11:23):
Is there something genetic they didn't know? And because she
was adopted, we got sent very early on in this journey
Yes. And I will say, I know so many families who
fight for years to get the genetic testing and have
a diagnostic odyssey that takes years and years and years. But because of
(11:44):
the adoption, we got that genetic testing very early on. Very
quickly at that point, Dahlia was diagnosed with myoclonic
epilepsy ragged red fibers, which is an ultra rare
Yeah. In the book, you're like, I remember mitochondria, powerhouse of
the cells from eighth grade, and that's about it. And I'm like, where I
(12:06):
That was it. I was like, mitochondria? Do we really need them? How
important are they? I was like, can we do a transplant? What does
this mean? And the thing about a rare disease is
there's not much data to go on. So we
couldn't get definitives that I wanted. I wanted to know, what
do you mean? What's going to happen? And all we heard was, it's degenerative. I
(12:27):
didn't even really understand what that meant. It's degenerative, but
they couldn't tell us what was going to happen other
than she will likely be in a wheelchair because she was so wobbly.
They knew that the areas where she was having symptoms would most certainly get
worse. But even at that, I wanted more certainty. When will she
be in a wheelchair? And they couldn't tell us.
(12:48):
And they said her hearing will get worse. When, when, when? How worse? And
they just didn't know. They just didn't know. And I will say that later
on in Dalia's life, she got a secondary mitochondrial diagnosis. It's
very rare to have the two specific ones that she had and
that she was only one of six in the world who had been identified with that
(13:08):
Oh, and I know in the book that you had to teach a bunch of
medical people about MRF because they had
never heard of it and it's so rare and it must be so frustrating to know more about
something than the doctors that are supposed to be taking care of your kid. I can't imagine how
Yes. And that is really something that's very, very common in
the rare disease world. We, as the parent, know
(13:30):
nothing when we get the diagnosis and very quickly you
become the expert. Now, as parents, we all know where you're the expert
in our children, but we really became
the experts in her disease. And because it's so rare and so many
medical people knew nothing about it, we would often find ourselves
educating even people in the medical field. And
(13:52):
that made me so uncomfortable. I was like, oh my God, if I'm the expert, we
are all in trouble because I don't even remember. I was the one who didn't know what mitochondria were,
Oh gosh, so frustrating. So frustrating. So how quickly
did it, you know, escalate for Dahlia?
So, you know, what happened was really the next four years or
so, our lives changed, but they didn't
(14:16):
change completely. What I mean by that
is she was still in mainstream school. She had an aid, and
yes, she ended up with a walker, and then she ended up
in a stroller when we were going long distances, and then she did, in fact, end up
in that wheelchair. And we did have to keep turning the hearing aids up. And
she did take many medications every day, and we
did have PT and OT and all the other things. So
(14:39):
yes, it was complicated, but We were
mainstream. And, you know, she had what
Yeah. But you know what the thing is with degenerative, you're watching.
We were trying to like cram as much knowledge and learning into her because we
(14:59):
knew things were going to slip away as well. So
then when she turned nine, right before her ninth birthday,
we went on a family vacation. I mean, even that, the idea that we were able
to go on a family vacation to Florida. And
there she caught a cold. All three of our kids had
a cold. And the thing with a mitochondrial disease and with so many
(15:22):
other diseases, obviously, is that you
can turn on and die. We have been told that, but we didn't really
know what it meant. And then here she was. We were in Florida with a cold. And
I called the doctor at home because she really sounded like, you
know, really gunky and, you know, something was going on. I
said, go go to the ER, just see what's going on and whatever. Which
(15:43):
I did. And very quickly she developed pneumonia and
she was intubated. And things escalated very,
very quickly. We got sent to another hospital by ambulance. And I was like, wait
a second, what is happening? You know, it was like so fast. Oh,
man. Yeah. So she was put in the
pediatric intensive care unit. And I will say to our earlier conversation
(16:05):
a few moments ago, nobody in that hospital knew what
her disease was. They were Googling. I mean, literally they
were like, okay, so I Googled it in and I'm like, oh my God, oh my God, we got to
get back to Boston. By the way, my two other kids were
still there and now we're admitted in the hospital. My sister came and picked up
the others and brought them home, but here we are in the hospital and
(16:26):
we just want to get back to Boston. But it's not so easy
because when you're intubated, you can't just like get on JetBlue and fly home, right?
We needed a medical jet. Whole big thing trying to fight that
That was a fascinating story. Oh, I can't imagine how frustrating that
So frustrating, you know, and then we finally did get back to
Boston. And I remember it was a week before her ninth birthday. And
(16:48):
the day she was admitted, I remember saying to the doctor, just promise me we'll be home
for her birthday. He said, I can't promise you that, but I promise you'll
be out of the intensive care unit. Well, we stayed in
that intensive care unit for three months. He
was quite wrong. We celebrated her ninth birthday in the hospital. We
lived in that pediatric intensive care unit for the next three months
(17:11):
and tried so hard
to get any kind of improvement. You
know, we would get extubated and she'd have to be re-intubated, extubated,
re-intubated because her lungs just
were losing the ability to function. And
ultimately, it became clear to us
(17:33):
because the doctors told us, she's not going home without
a tracheostomy. And so for people who don't know, that's when you
have a little tube, you have a hole in your neck that's like the
size of a dime or something and maybe a quarter and
a little tube that goes in and your breathing happens through
that tube that bypasses the normal breathing function.
(17:55):
So when we left the hospital three months later, Dahlia had a
trache which in her case meant, and I'll be clear, it
doesn't always, but it often means you can't speak and
you can't eat orally. And that's what it meant for her. She
was not able to walk at all anymore. She lost all functionality in
that respect. And she needed to be attached
(18:16):
to a ventilator to breathe. She couldn't generate enough of that mechanism
on her own. So that is when things changed dramatically.
That's intense. Now, how much was Dahlia aware
You know, she was very aware at that point. And what's interesting
is the trach gave her some immediate relief because she had been working so
(18:38):
hard. to try to breathe and
her body couldn't do that. So the trach gave her some relief. The
other thing is she had lost the ability to swallow. So she
needed to be suctioned constantly. And without the trach, that needed
to happen in a very painful way where they go up through your nose and down through your throat. The
trach made suctioning very easy. But she
(18:59):
was very upset about the feeding
tube. She now had a G-tube and all of her meals came through
that. And that was the thing for her that was most upsetting.
So at that point, there were a lot of ways. First of all, she could mouth
very clearly and she could point. very
(19:21):
emphatically, and she could nod her head yes and shake her
head no. So we felt we were really able to communicate with her
quite well at that point. At points along the way,
she also had different devices that helped her communicate. For
us, it was always the mouthing that was best. Over time,
all of the things I just mentioned faded away. She could not
(19:42):
move at all. At the end, for two years, she
couldn't move at all. So there was no pointing or shaking her head or
mouthing or anything like that. And that became much,
much more challenging, as you can imagine. And so from
age 9 to 17, she was what's called an eyes-on patient,
meaning myself or my husband or a nurse trained specifically
(20:08):
So she didn't aspirate. She just, in case the trach popped out. Also,
by the way, P.S., my husband and I were working full-time jobs this whole time out
of the house. And we had two other kids, you know, so it
was complicated. It was very, very, very complicated. And
the insidious part about it is it was a degenerative disease.
So slowly, even that functionality that she had, we watched that
(20:34):
Yeah, that must have been just so hard for everybody involved
in your family. And I think about your other kids and
just you guys trying to juggle everything, trying to keep everything going
and give her the best life possible because you knew it was coming to
an end and just all the limitations and
struggles. Gosh, my heart just goes out to you. It sounds so,
(20:56):
so, so hard. What tools did
Well, first of all, I will say that it
was, as you point out, obviously, unbearably hard.
There was also a ton of beauty and I don't say that in a Pollyanna way.
I say that because Dahlia was kind
(21:18):
of orchestrating, conducting this show. And she
wanted to be a kid and she wanted to have fun and she wanted
to be silly and she wanted to wrestle with her brothers and she wanted to,
you know, and so we followed her lead. And so there was a lot of laughter and
there was a lot of, there was a lot of beauty and a lot of joy.
And yes, there was also grief and sorrow and anger and frustration and
(21:39):
fear and all that other stuff. And they all kind of blended together. It was like a
constant blender, you know, and all of that existed,
all of it existed. So that was one thing. Another tool that
we used, something really practical and silly, and it sounds
silly because it's so easy, was that my husband
and I gave each other a night off each week. That was a really important thing
(22:01):
for us to have one night during the week when we could each
kind of just do whatever we wanted and not be on.
And we actually got that advice from a couple that we were friends with
who had one healthy child, but they did that. And we were like, oh
my God, Why aren't we doing that? You know, so that was great. And
I think we got a lot of strength, the five of us from each other. I
(22:23):
mean, it became kind of insular to a certain extent, though,
again, going to work was also a survival strategy for me getting
out of the house and being able to be the me I had been before.
That was important. And I think also ultimately made me a better caregiver. I
faced some judgment for that decision. there were definitely people
who felt like, how could you possibly do that? And I felt like it allowed
(22:45):
me to be more present when I was home, you know, because I did
have that time away as well. And also P.S. Dolly
was in school during this. So it made no sense for me to sit home while she was in school.
Yeah, what are you going to do? Yeah, she went to school with a private nurse and then
she went to a terrific school. I actually was just there giving
a talk yesterday called the Kennedy Day School, which is on the grounds of Franciscan
(23:05):
Children's Hospital in Boston, Mass. And so There,
they were very accustomed to very serious medical conditions, and
she had a beautiful experience there. And she was there really, I
mean, the last two years of her life were COVID, but even still, even
during those years, she was dialing in from home and doing that
Okay. Now, I thought you said the last two years she couldn't move
(23:27):
at all. Right. So how did she go to school? How
Well, so those last two years and, you know, even before that
when she was going, but during COVID, we were all home, obviously. I
mean, that was an interesting time because all of a sudden the whole world kind
of understood what our life had been like in terms of, you know, fears
(23:47):
about catching things and hypervigilance. But
when she couldn't move at all, we became
very physical for the rest of us in terms of moving
her and positioning her, et cetera. And it was
really awful. I mean, she couldn't blink. So we had to tape her
eyes shut when she was sleeping so that her corneas wouldn't dry
(24:08):
out. And we had to just really
position her and just feel what she
wanted and communicate with her in a way that
was very different from how I've ever communicated with anybody else.
And you know, it was interesting because the doctors to their credit
really did at that point start taking our lead. It
(24:28):
was hard to know what was inside at that point because
literally she could not move any piece of her body. And
we sensed her, we really felt her there for a long time and
So it was as if her body were comatose but her mind
Yes, you know, there was absolutely a big impact on her
(24:51):
brain, 100%. The thing is, we never knew how
much of an impact and therefore we operated as though
she could understand us and what we said to the kids and what we believed was, if
Well, when your grandmother or somebody is dying, they say the last thing
to go is their hearing. I think that's true. And to
(25:14):
Dahlia came to our dinner table every single night until the
night before she died. I mean, she was part of everything. And
there were a lot of snuggles. There was always music, even
though when she had her hearing aids out, you know, who knows what she could have
heard. But I do believe she could feel, I
really do. And again, for sure, she wasn't like fully cognitive
(25:35):
and then just couldn't move because there are diseases like that. That
wasn't, I mean, she definitely was, it was quite pronounced in
her brain as well for some time. The last test we
were able to do on her brain, they had already seen a lot of
impact. And then those tests became not feasible
for her anymore because of all of her machinery, et cetera. But
(26:01):
Yeah. Well, I think that you opted for
the right direction of things. You want to assume that she can
hear you or feel you and present to her what
you want to put forward, right? I think a lot of
times that people in kind of those kind of places where people
with severe disabilities get warehoused, they kind of get treated just like a
shell of a person. They're still there, even if it's
(26:24):
just their spirit or whatever. Let's opt for assuming
that they're there and fully aware of whatever you're
Yeah, and you know, it's interesting that you say that because as I mentioned yesterday, I
was speaking at the school she went to and it was their back
to school day for faculty and I was addressing the group and
that was something we were speaking about was that very idea
(26:46):
that if you cannot tell, always assume
that the child, in this case the student, can understand. You
know, they may not be able to show that through facial movements, through
vocalization, et cetera. But let's err on the side of
Yeah, that's brilliant. I think that can go a long way for
(27:07):
lots of different situations. Yeah. So, gosh,
your journey has been so tough. What did you learn about
certainty and control? You know, you started this journey
as a certain path toward family and you
did get, you have a family, you will continue to have
a family, but it's certainly not what you originally signed
(27:28):
up for. How have you reconciled that within yourself? What have you
Yeah. You know, I thought that I could control
the situation. Even when she got the diagnosis, I thought, OK,
well, then I will fix it. Yeah. Right. Like, OK, I'll
go figure it out. I will figure it out. Yeah, we'll cure mitochondrial
disease, even though like an hour ago, I didn't know what mitochondria were. You
(27:49):
know, I really took it up myself to try to, you know, find
those clinical trials and figure things out. And obviously that
was a fantasy. And what I
learned was I can't control the trajectory here.
I can control the next hour of what we're going to do. I
can control whether we're going to make the next
(28:11):
hour full of joy. I can control how
we are going to approach the situation, right? So
You know, and I wonder, in retrospect, I don't know that this was a
like, OK, Jesse, you know, self-talk. I can't control this, but I
can't control this. I think it just kind of is what happened. And my
emphasis really shifted from trying to control
(28:34):
the ultimate outcome, which was, like I said, fantasy,
and instead trying to create as much of a
childhood for all three of the kids as I could.
because there's so much heaviness, even aside
from the underlying or overlying, you
know, both grief and sadness and all the other stuff. There's so
(28:57):
much heaviness in terms of just the minute by minute living
on the precipice, the intense medical care, the doctor's appointments. It's
so heavy. And here, you know, Diane is a kid. She
just wants to be like an 11 year old or whatever. Right. And the same
with the siblings. And so how do we do that? How do we fuse that
kind of joy and levity and light into
(29:20):
Ah, such a challenge. But it sounds like you realized what you
have control over, which is kind of shaping the ethos
of your family. I mean, you can't control the other members of your family to
go along with it, but you can at least set an example or set the tone as
the parent of what our family is going to be like
this. Yes. And within yourself, you can present
(29:42):
yourself. You're in your own control of what you present in
Right. Exactly. Exactly. And, you know, it
was all during this time that I wrote my book. I will say, you
know, the book was actually complete. before Dahlia died. This
is in no way, shape or form, as you know, since you read it, it's not a book about Dahlia's death.
It was a book about our journey with her. And
(30:05):
I think, you know, also when we write what's happening in our lives, it
gives us an opportunity to have a bit of control, since we're
talking about control right now, control of the narrative, right? Because
it is so out of your control. So if I'm going to write it, this is my experience of
Yeah, writing is a great tool. People use that in therapy all the time, journaling
(30:26):
or Specific writing prompts writing is extremely helpful.
Yeah, I was also just You
know, I feel so much compassion toward you and empathy because
I see myself in you a lot. And my son struggles
with different things, but I've also had to learn that I can't
control him. I can't control the progression of his disease of addiction,
(30:48):
mental health issues. All I can control is how I show up
for him and what resources I provide for him. I can't control
if he's going to take them or if he'll follow through with any of it
or anything like that. So I feel like this
It's so hard. And the mental health stuff is so challenging. And
in many respects, it can feel more challenging than
(31:10):
the medical because you feel like the person who's going through it,
well, come on, just come on. And
it's so unpredictable. And I
remember a friend of mine was in a class in
the The professor said, listen, your kid is about to
go on a roller coaster. There's going to be ups and
(31:32):
downs and highs and lows and this and that and the other thing, and your kid's going to be screaming. And
your job as the parent is not to get on the
ride. You can stay down below. You
could be cheering them on. You could be sending your support, doing whatever, but
don't get on the ride. And I have felt, because I've dealt with a lot, it's not only
the medical stuff, there's been a whole host of other things in
(31:52):
the family. And I have felt like, oh
no, I want to be strapped right in next to my kid. I want to be holding my
kid's hand. I want to be You know, and that doesn't serve us. And it ultimately
It's super hard. It's a similar metaphor. But like my
kid is out in outer space spinning around, like in that gravity movie
(32:16):
Yeah, like that. Yeah. Terrifying. And if I don't stay
tethered as a parent to something's holding me
still, I'm going to be out there floating around too. And then neither
of us are helping anybody and we're bumping into each other and getting
lost further. One of us has to stay tethered and
calm, as calm as possible. But God, it's
(32:37):
so hard. It's like the journey of a lifetime to figure this stuff out.
Yeah. And you got two others that
Yeah. And who saw things that most people just
don't ever, like I was saying, watching your
(32:59):
sibling's eyes get taped shut, you know? I mean, things that just
Yeah. I'm sure they're going to have to work through a lot of stuff. It's
not their fault or anybody's fault. Just that's what happened in
that lifetime. Did you ever find out
Yes, such a good question. So, you know, it's really interesting because
(33:23):
of the three children, the only birth mother we met was
Dahlia's. Okay. And we met her twice. And we
met the birth grandmother. And I say that because MIRF syndrome is
almost always maternally passed out. Okay. So the
chances are that both her birth mother and birth grandmother had it.
and the chances are overwhelming that they didn't know. It's
(33:44):
so rare and it is unlikely that it
was diagnosed in Guatemala. So what happened was we met
them when we first
brought Dahlia home and we had a lovely, lovely time
with them. And it was such a gift to be able to meet them.
And they were just so lovely and vivacious. And
(34:06):
it was it was really such a special memory. And then when
we went back to Guatemala, we went five times to Guatemala. The
next trip, we saw them again. And what
happened was the birth mother was visibly
ill. She had lost a tremendous amount of weight. She had been slim to begin with,
and she needed a lot of support from her mother,
(34:27):
from Dahlia's birth grandmother, to walk. And
we asked what's going on, and they said, we don't know. We think it's her stomach or
something. They didn't know. And of course, all of this is through a translator. We
really didn't think much of it. We didn't know that what we were witnessing at
that point was really going to dictate every single thing about the
Yeah. And so then, of course, you know, one of
(34:50):
the first things as soon as Dahlia was diagnosed was to try to
get in touch with them. But that did not end up happening. It
did not end up being possible. We were never able to locate them.
So we don't know what what happened, but it's pretty certain that
they had MIRF syndrome. And again, I
I'm sure. Yeah. Well, and it's so tricky, you know, when you
(35:12):
have a biological kid, no one knows what's going to happen. This idea of
certainty in any context of parenting is kind of wishful thinking. But
especially with adoptive parenting, you really don't know, especially
adopting from another country where the services and prenatal care may not
have been great or, you know, we have no idea. We have no idea. What
advice do you have for adoptive parents or hopeful adoptive parents,
(35:34):
people that maybe wish to adopt someday? I don't
know. From what you've learned, how would you have set yourself up differently if
I love the question because I feel like, you know, people might hear my story and
say, oh, my God, I'm not going to adopt because who knows and blah, blah, blah. So I want to say a few
things about it. Number one, I am very involved in
the rare disease community now, and I know many, many, many families. And
(35:57):
I don't think I know any. I have to check
with my internal Rolodex, but they're all biological
family. And most of the time, the parents weren't aware that
they were either carrying something or whatever, you know, so. this can
happen. People end up having conditions, diseases, whatever, no
matter how they come. And I will tell you, it was very interesting because when
(36:19):
we were adopting, as I'm sure you know, many of the listeners, we had to go to
some kind of like group session ahead of time. And
there was one guy there and I remember he said, well, what happens if something's wrong with the kid?
Can we, essentially he was asking like, is there a return policy? And my
husband and I were like, what? But I will say that
my sister, who was 100% biologically related to
(36:40):
me, died when she was 30. She had
a cardiac event. She had something that she had been
born with that people didn't know about. And she was 100% biologically
connected. So I guess I feel like we never
know. No matter how these babies come to us, we do not know. Parenthood
is a leap of faith. And so there is
(37:02):
no guarantee if we adopt, there is no guarantee if we have our kids
biologically, period. And I also understand when
people say, but I don't want to take a risk. I didn't want to sign up.
I never would have signed up for it. And in fact, I didn't because
as you know, you have to do a checklist. Like I'm
okay with this. I'm okay with that. And I was like, I don't want any of it. I didn't sign up
(37:24):
for any of it. And yet I never, ever
thought why me or I wish I had known. In fact, I
thought, thank God I didn't know. Because by five years
old, when Dahlia was diagnosed, she was my baby. I was her mom. Thank God
we hadn't known because we were meant to be together. It was
so clear that we were, without sounding too woo-woo or
(37:45):
whatever, we absolutely belong together. And that's
what happened. But I just feel like there are no guarantees. I
cannot even tell you how many families I know where
the kids end up having some really, really tricky
(38:06):
We deal with whatever comes up. Yeah. And even, you know, I mean, here's one of
the things, right? We find out that we can deal with it. I didn't think
I could deal with this so much so that I didn't check it off on those forms. Yeah.
And then you deal with it and you realize we're capable of so much more
The universe says here, two on this. Figure this out.
Oh, man. So painful and so beautiful. Like
(38:29):
you said, there's so much beauty and light
within this very dark and sad situation. And
I can hear that and read it in your book and see it in your face. And I'm
so glad you are sharing your story. I think we all can learn from
your story of releasing control, loving what
is in front of us, accepting whatever is in
(38:55):
Oh, thank you so much for having me. And, you know, I do share a lot of stories. So
please, listeners, I'd love for you to check out the book Breathtaking. And
on my website, I do a lot of writing now. A lot of it obviously is about grief, but
I just define stories dot com. And then, you know, I
have a podcast where I talk to people whose lives seem unimaginable. And
a lot of those are families that are struggling
(39:16):
with things that from the outside look really unbearable. I
I don't know how you do it. All of us who hear that all the
time, right? When people say, I don't know how you do it. I'm like, well, what choice do
I have? You know, but here we get into it and we talk about
Yeah. Well, you're doing a lot of great work in the world. What's the best way
(39:38):
for people to get a hold of you? Is that your blog page? Yes.
Well, first of all, I love connecting with people on social media, Instagram. So
my last name is F like Frank E-I-N. That's the first thing
that people might get messed up about. But it's jessicafinestories.com
is my website. And that's kind of the
hub of everything that's going on. And then again, Instagram is
(40:02):
Okay, I'll put all those links and connections in the show notes.
So everyone go look that up. Thank you so much, Jessica. I'm so
glad we connected. I really feel a heart connection with you. And I
am with you as you continue this journey, this tough,
tough journey of parenting and humaning. So
(40:23):
And listeners, thank you for listening and for engaging
with us here at Unraveling Adoption. Find us at unravelingadoption.com. You'll
find a list of calendar events and
there's many resources such as the Healing the Adoption Constellation
database on there. All of our podcast episodes can
be found there and just a plethora of information. If
(40:46):
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adoption. Thank you to all the wonderful Patreon supporters who
(41:07):
help us out each month. Thank you all for listening. Jessica
Welcome to this episode of Unraveling Adoption, an intentional space to
delve into adoption's complexities together. I'm Beth Syverson. I'm
an adoptive mom of an engaging and bright 20-year-old son, Joey.
I'm walking beside him while working on my own personal growth and healing. I'm
also a certified coach helping seekers who want to move forward in their life.
Joey and I are committed to helping anyone impacted by adoption, and we want to
(00:24):
help the general public understand adoption's complexities better too.
I don't often have other adoptive parents on as guests, but
this episode's guest, Jessica Fine, has a very unusual
story to share with us. Jessica Fine's memoir is
called Breathtaking, and it is certainly that.
Her memoir and her story is breathtaking. And in
(00:46):
it, she writes eloquently about the love of her family that
was formed by adoption and the loss of her middle child,
Dahlia, to a rare genetic disorder when she was 17. So
welcome to Unraveling Adoption, Jessica. I'm so glad you're here.
Yes. And first, oh my god, I'm so sorry
(01:07):
about Dahlia's death. And your family's
story is just gut-wrenching. And I just want to acknowledge that right
at the front. Like, ugh. Ugh, yes.
And we are all, all of us listening, all of us at Unraveling Adoption
are just holding you and your family in our hearts. And we appreciate you sharing
your story so we can learn from your experiences and
(01:30):
understand, you know, like we say, the complexities of
adoption. And your life is complex and
then you add adoption onto it as well. So you've got like many
complexities happening. Many, many ways.
You got the hard version of this game of life. Yeah.
Well, why don't you just tell us about your family's adoption story before Dahlia,
(01:51):
before you knew she was ill. Just tell us how you all became a family in the first
Okay, great. I'd love to. Thank you again for having me. Well,
first of all, we dated for 10 years before we got married. So
we met in college and we, I guess, really wanted to be sure,
but we waited 10 years and we
got married in our late 20s. thought
(02:13):
we would become parents the quote unquote conventional way.
And we started down that path and our efforts
became increasingly creative as, you know, the entire Boston scientific
medical community became involved with us as
we went through our fertility journey. And we spent five years
on that journey. And boy, there were a lot of twists and
(02:41):
Yes, absolutely. In fact, there was a lot that
was in this current book that didn't end up making it in, but yeah, that's
for sure a book in and of itself. And so what
happened was around year four and a half or
something of that journey, we decided to pursue adoption
simultaneously. And during that time, so
(03:04):
we were in our kind of final throws, our last attempts with the
gestational carrier and the whole thing, but we were also beginning to research
adoption. And we started to really fall in
love with the idea of adoption. And the more we
learned about it, the more we felt that that was the path for us.
So even though we were still doing the fertility stuff, it
(03:25):
became so much less weighted, so much
less gruesome, because it was like
this thing we were doing on the side. And we loved the
idea. At the time, what we thought of was adoption
is a certainty. We know we will end with
a child. And I remember it felt so freeing to
(03:47):
me to say, OK, whatever happens, I know for
sure by 35 I'll be a mom. Because all
these years before, it was like, is this going to work? Is that going to
work? Oh, it's working. No, wait, we lost. You know what I mean? And so this idea that,
OK, something is in our control. And it's so funny to me
because really nothing, of course, was in our control.
(04:08):
But all of a sudden, it felt like we were taking control because we were making this
decision that was going to end with a child. We knew
I can really relate to that because we also struggle with infertility and
it's such a numbers game statistics and how many follicles and oh lord,
it's so terrible. It's just, if no one's gotten through
(04:29):
infertility, it's brutal. It's really brutal. And
then no one in the infertility community helps you with
your grief if you decide to stop that path.
They're not saying, oh, well, let me help you with that. They're like, no, please come
And all the grief along the way, I mean, it is the ultimate roller
(04:50):
coaster. You have to believe every time is going to
work, otherwise you can't do it. So you believe that every time and
then you're disappointed every time. And then, you know, for those people who achieve
pregnancy, but then they lose the pregnancy. I mean, for us again, you know, we
just kept getting more and more complex with what we were trying and it
Yeah. One of my future books is going to be about that whole thing and
(05:13):
how it's not serving parents. And especially it,
it really harms our adopted kids too, I
think, because we didn't, I don't know about you. I didn't deal with
my infertility grief until like now, 20 years
later, and it really affects our kids. And so
anyway, that is one of my soap boxes I want to get on soon. But
(05:33):
I get it, and I get how, wow, adoption. There are so many kids
out there that need families. OK, this is going to work. And
there's a sense of control, of certainty. And
I can totally understand that as an adoptive parent. Like, whew,
this will work. This will work. OK, so go on with your story.
So we felt like, you know, and what
(05:56):
I say in the book is, you know, never mind that we were planning on intertwining ourselves
with the family across the world that we didn't know. And, you know, we
were like, we've got this, we're in control. Because once we
decided to adopt, first of all, we became so
enthusiastic about it, as I mentioned. And we also decided
right away that we were going to do international adoption. That
(06:17):
was something my husband and I really just both felt in
our gut. And it's interesting when the two players involved
agree so dramatically or so powerfully, you
don't really need to examine why, right? It didn't matter. We both agreed.
We knew that's what we wanted to do. We were doing it. And we weren't really wed
to any one country over another. We explored them all. I had the
(06:38):
huge spreadsheet, you know, all the different characteristics in each different
country. And ultimately, we landed on Guatemala because
on the spreadsheet that I had made, there were the most checks in the columns that we
were looking at, right? And we wanted children who had
been in foster care and we wanted younger children and so on and so forth. And
again, any little, little seed of perceived
(07:00):
control is something we were raising our hand for at that point. So
we chose Guatemala. And of course, then
there was a lot happening politically. And
we were matched with the child who became our
eldest. And we found out about that
child at nine months old. Now, I had this whole
(07:23):
thing in my mind that we were going to have an infant because there
were a lot of infants available. And then everything
shut down. So we're now committed to this child in
our heads and our hearts, you know, but it was not happening.
I mean, time was going on and on and on. So we ultimately brought our
(07:47):
That was a long night. Yeah. Between nine
months and 15 months. So yes, that was a long time when we were sending presents
and we were writing letters and the whole thing. And at the time, you
were not really meant to go see the child
ahead of time because especially
at that age, you know, you'd want to form an attachment and then
(08:08):
you'd leave. So it just didn't make sense. So we brought our
first home at 50 months and then we were on a roll. We were like, OK, we've got
this. So we did another two years and then another two years. So we
ended up adopting three children. Our final one
was in 2007, right before the Guatemala adoptions shut
down. I mean, like he came in right at the very end and
(08:29):
we had our three babies. And I came from three. My husband came
from three. We always wanted three. So we thought, okay,
Exactly. Exactly. Yeah. So we
had a few blissful years of, you know, baths,
bottles, and bedtimes. And, you know, the chaos that
(08:53):
we had sought for so long of having a bunch of little
ones at home. And then when our
middle daughter, our middle child, Dahlia, pretty early
on, we brought her home at six months and pretty early on, we started
to suspect, or I started to suspect, I should say, that
something wasn't right developmentally. She was having
(09:14):
trouble with language and she was a little wobbly and just some
different things. And, you know, the mama instinct kicks in
and I called an early intervention. And they
came to the house and they played all the games with her and did all the things and ended up
saying, she's fine. She's on the lower end of average. She'll catch up.
(09:34):
Doctors are saying she's going to catch up. Right. Exactly. We don't know what happened in prenatal. We
don't know what happened before you got there. Give her time, give her time. Okay. But
things didn't improve and I felt they were getting more pronounced. So again,
brought early intervention into the home. Same thing. Although they
were a little less psyched to be at the house time number two, you know. And
(09:54):
then I brought them out a third time. That time I had to kind of beg them to
come out. And the third time they said, everything's fine.
And so this is what I was hearing from doctors and this is what I was hearing from early intervention.
And, you know, I think so many parents can relate to this, no matter how you came
to be parents, when you feel there's something that's wrong, and you also are
kind of self-conscious. And my being that overly anxious
(10:17):
parent, and for sure I had waited so long to become a parent, I
felt I could have easily been just overly anxious. But
ultimately, by age four, the doctor agreed
that we could do a hearing test. Of all things,
because our issues had to do with speech and balance, it
was reasonable to think maybe it's something hearing related. So
(10:41):
that was our first diagnosis. Dahlia was diagnosed with mild to
moderate hearing loss. And this was a condition that
would be fixed with hearing aids. Great.
Except that I will say, it's funny now
with everything we've been through at the time, I was like, oh my God, hearing
aids, you know, and I just, I look back at that version of
(11:02):
me now and think about how naive I was, you know,
because I thought this was such a big deal that she was going to
need hearing aids. But in any event, she got her purple sparkly hearing
aids. She was over the moon. She could hear. But there
was this big question. Why does she have the hearing loss?
Right. Was there a virus early on? Did something happen early on?
(11:23):
Is there something genetic they didn't know? And because she
was adopted, we got sent very early on in this journey
Yes. And I will say, I know so many families who
fight for years to get the genetic testing and have
a diagnostic odyssey that takes years and years and years. But because of
(11:44):
the adoption, we got that genetic testing very early on. Very
quickly at that point, Dahlia was diagnosed with myoclonic
epilepsy ragged red fibers, which is an ultra rare
Yeah. In the book, you're like, I remember mitochondria, powerhouse of
the cells from eighth grade, and that's about it. And I'm like, where I
(12:06):
That was it. I was like, mitochondria? Do we really need them? How
important are they? I was like, can we do a transplant? What does
this mean? And the thing about a rare disease is
there's not much data to go on. So we
couldn't get definitives that I wanted. I wanted to know, what
do you mean? What's going to happen? And all we heard was, it's degenerative. I
(12:27):
didn't even really understand what that meant. It's degenerative, but
they couldn't tell us what was going to happen other
than she will likely be in a wheelchair because she was so wobbly.
They knew that the areas where she was having symptoms would most certainly get
worse. But even at that, I wanted more certainty. When will she
be in a wheelchair? And they couldn't tell us.
(12:48):
And they said her hearing will get worse. When, when, when? How worse? And
they just didn't know. They just didn't know. And I will say that later
on in Dalia's life, she got a secondary mitochondrial diagnosis. It's
very rare to have the two specific ones that she had and
that she was only one of six in the world who had been identified with that
(13:08):
Oh, and I know in the book that you had to teach a bunch of
medical people about MRF because they had
never heard of it and it's so rare and it must be so frustrating to know more about
something than the doctors that are supposed to be taking care of your kid. I can't imagine how
Yes. And that is really something that's very, very common in
the rare disease world. We, as the parent, know
(13:30):
nothing when we get the diagnosis and very quickly you
become the expert. Now, as parents, we all know where you're the expert
in our children, but we really became
the experts in her disease. And because it's so rare and so many
medical people knew nothing about it, we would often find ourselves
educating even people in the medical field. And
(13:52):
that made me so uncomfortable. I was like, oh my God, if I'm the expert, we
are all in trouble because I don't even remember. I was the one who didn't know what mitochondria were,
Oh gosh, so frustrating. So frustrating. So how quickly
did it, you know, escalate for Dahlia?
So, you know, what happened was really the next four years or
so, our lives changed, but they didn't
(14:16):
change completely. What I mean by that
is she was still in mainstream school. She had an aid, and
yes, she ended up with a walker, and then she ended up
in a stroller when we were going long distances, and then she did, in fact, end up
in that wheelchair. And we did have to keep turning the hearing aids up. And
she did take many medications every day, and we
did have PT and OT and all the other things. So
(14:39):
yes, it was complicated, but We were
mainstream. And, you know, she had what
Yeah. But you know what the thing is with degenerative, you're watching.
We were trying to like cram as much knowledge and learning into her because we
(14:59):
knew things were going to slip away as well. So
then when she turned nine, right before her ninth birthday,
we went on a family vacation. I mean, even that, the idea that we were able
to go on a family vacation to Florida. And
there she caught a cold. All three of our kids had
a cold. And the thing with a mitochondrial disease and with so many
(15:22):
other diseases, obviously, is that you
can turn on and die. We have been told that, but we didn't really
know what it meant. And then here she was. We were in Florida with a cold. And
I called the doctor at home because she really sounded like, you
know, really gunky and, you know, something was going on. I
said, go go to the ER, just see what's going on and whatever. Which
(15:43):
I did. And very quickly she developed pneumonia and
she was intubated. And things escalated very,
very quickly. We got sent to another hospital by ambulance. And I was like, wait
a second, what is happening? You know, it was like so fast. Oh,
man. Yeah. So she was put in the
pediatric intensive care unit. And I will say to our earlier conversation
(16:05):
a few moments ago, nobody in that hospital knew what
her disease was. They were Googling. I mean, literally they
were like, okay, so I Googled it in and I'm like, oh my God, oh my God, we got to
get back to Boston. By the way, my two other kids were
still there and now we're admitted in the hospital. My sister came and picked up
the others and brought them home, but here we are in the hospital and
(16:26):
we just want to get back to Boston. But it's not so easy
because when you're intubated, you can't just like get on JetBlue and fly home, right?
We needed a medical jet. Whole big thing trying to fight that
That was a fascinating story. Oh, I can't imagine how frustrating that
So frustrating, you know, and then we finally did get back to
Boston. And I remember it was a week before her ninth birthday. And
(16:48):
the day she was admitted, I remember saying to the doctor, just promise me we'll be home
for her birthday. He said, I can't promise you that, but I promise you'll
be out of the intensive care unit. Well, we stayed in
that intensive care unit for three months. He
was quite wrong. We celebrated her ninth birthday in the hospital. We
lived in that pediatric intensive care unit for the next three months
(17:11):
and tried so hard
to get any kind of improvement. You
know, we would get extubated and she'd have to be re-intubated, extubated,
re-intubated because her lungs just
were losing the ability to function. And
ultimately, it became clear to us
(17:33):
because the doctors told us, she's not going home without
a tracheostomy. And so for people who don't know, that's when you
have a little tube, you have a hole in your neck that's like the
size of a dime or something and maybe a quarter and
a little tube that goes in and your breathing happens through
that tube that bypasses the normal breathing function.
(17:55):
So when we left the hospital three months later, Dahlia had a
trache which in her case meant, and I'll be clear, it
doesn't always, but it often means you can't speak and
you can't eat orally. And that's what it meant for her. She
was not able to walk at all anymore. She lost all functionality in
that respect. And she needed to be attached
(18:16):
to a ventilator to breathe. She couldn't generate enough of that mechanism
on her own. So that is when things changed dramatically.
That's intense. Now, how much was Dahlia aware
You know, she was very aware at that point. And what's interesting
is the trach gave her some immediate relief because she had been working so
(18:38):
hard. to try to breathe and
her body couldn't do that. So the trach gave her some relief. The
other thing is she had lost the ability to swallow. So she
needed to be suctioned constantly. And without the trach, that needed
to happen in a very painful way where they go up through your nose and down through your throat. The
trach made suctioning very easy. But she
(18:59):
was very upset about the feeding
tube. She now had a G-tube and all of her meals came through
that. And that was the thing for her that was most upsetting.
So at that point, there were a lot of ways. First of all, she could mouth
very clearly and she could point. very
(19:21):
emphatically, and she could nod her head yes and shake her
head no. So we felt we were really able to communicate with her
quite well at that point. At points along the way,
she also had different devices that helped her communicate. For
us, it was always the mouthing that was best. Over time,
all of the things I just mentioned faded away. She could not
(19:42):
move at all. At the end, for two years, she
couldn't move at all. So there was no pointing or shaking her head or
mouthing or anything like that. And that became much,
much more challenging, as you can imagine. And so from
age 9 to 17, she was what's called an eyes-on patient,
meaning myself or my husband or a nurse trained specifically
(20:08):
So she didn't aspirate. She just, in case the trach popped out. Also,
by the way, P.S., my husband and I were working full-time jobs this whole time out
of the house. And we had two other kids, you know, so it
was complicated. It was very, very, very complicated. And
the insidious part about it is it was a degenerative disease.
So slowly, even that functionality that she had, we watched that
(20:34):
Yeah, that must have been just so hard for everybody involved
in your family. And I think about your other kids and
just you guys trying to juggle everything, trying to keep everything going
and give her the best life possible because you knew it was coming to
an end and just all the limitations and
struggles. Gosh, my heart just goes out to you. It sounds so,
(20:56):
so, so hard. What tools did
Well, first of all, I will say that it
was, as you point out, obviously, unbearably hard.
There was also a ton of beauty and I don't say that in a Pollyanna way.
I say that because Dahlia was kind
(21:18):
of orchestrating, conducting this show. And she
wanted to be a kid and she wanted to have fun and she wanted
to be silly and she wanted to wrestle with her brothers and she wanted to,
you know, and so we followed her lead. And so there was a lot of laughter and
there was a lot of, there was a lot of beauty and a lot of joy.
And yes, there was also grief and sorrow and anger and frustration and
(21:39):
fear and all that other stuff. And they all kind of blended together. It was like a
constant blender, you know, and all of that existed,
all of it existed. So that was one thing. Another tool that
we used, something really practical and silly, and it sounds
silly because it's so easy, was that my husband
and I gave each other a night off each week. That was a really important thing
(22:01):
for us to have one night during the week when we could each
kind of just do whatever we wanted and not be on.
And we actually got that advice from a couple that we were friends with
who had one healthy child, but they did that. And we were like, oh
my God, Why aren't we doing that? You know, so that was great. And
I think we got a lot of strength, the five of us from each other. I
(22:23):
mean, it became kind of insular to a certain extent, though,
again, going to work was also a survival strategy for me getting
out of the house and being able to be the me I had been before.
That was important. And I think also ultimately made me a better caregiver. I
faced some judgment for that decision. there were definitely people
who felt like, how could you possibly do that? And I felt like it allowed
(22:45):
me to be more present when I was home, you know, because I did
have that time away as well. And also P.S. Dolly
was in school during this. So it made no sense for me to sit home while she was in school.
Yeah, what are you going to do? Yeah, she went to school with a private nurse and then
she went to a terrific school. I actually was just there giving
a talk yesterday called the Kennedy Day School, which is on the grounds of Franciscan
(23:05):
Children's Hospital in Boston, Mass. And so There,
they were very accustomed to very serious medical conditions, and
she had a beautiful experience there. And she was there really, I
mean, the last two years of her life were COVID, but even still, even
during those years, she was dialing in from home and doing that
Okay. Now, I thought you said the last two years she couldn't move
(23:27):
at all. Right. So how did she go to school? How
Well, so those last two years and, you know, even before that
when she was going, but during COVID, we were all home, obviously. I
mean, that was an interesting time because all of a sudden the whole world kind
of understood what our life had been like in terms of, you know, fears
(23:47):
about catching things and hypervigilance. But
when she couldn't move at all, we became
very physical for the rest of us in terms of moving
her and positioning her, et cetera. And it was
really awful. I mean, she couldn't blink. So we had to tape her
eyes shut when she was sleeping so that her corneas wouldn't dry
(24:08):
out. And we had to just really
position her and just feel what she
wanted and communicate with her in a way that
was very different from how I've ever communicated with anybody else.
And you know, it was interesting because the doctors to their credit
really did at that point start taking our lead. It
(24:28):
was hard to know what was inside at that point because
literally she could not move any piece of her body. And
we sensed her, we really felt her there for a long time and
So it was as if her body were comatose but her mind
Yes, you know, there was absolutely a big impact on her
(24:51):
brain, 100%. The thing is, we never knew how
much of an impact and therefore we operated as though
she could understand us and what we said to the kids and what we believed was, if
Well, when your grandmother or somebody is dying, they say the last thing
to go is their hearing. I think that's true. And to
(25:14):
Dahlia came to our dinner table every single night until the
night before she died. I mean, she was part of everything. And
there were a lot of snuggles. There was always music, even
though when she had her hearing aids out, you know, who knows what she could have
heard. But I do believe she could feel, I
really do. And again, for sure, she wasn't like fully cognitive
(25:35):
and then just couldn't move because there are diseases like that. That
wasn't, I mean, she definitely was, it was quite pronounced in
her brain as well for some time. The last test we
were able to do on her brain, they had already seen a lot of
impact. And then those tests became not feasible
for her anymore because of all of her machinery, et cetera. But
(26:01):
Yeah. Well, I think that you opted for
the right direction of things. You want to assume that she can
hear you or feel you and present to her what
you want to put forward, right? I think a lot of
times that people in kind of those kind of places where people
with severe disabilities get warehoused, they kind of get treated just like a
shell of a person. They're still there, even if it's
(26:24):
just their spirit or whatever. Let's opt for assuming
that they're there and fully aware of whatever you're
Yeah, and you know, it's interesting that you say that because as I mentioned yesterday, I
was speaking at the school she went to and it was their back
to school day for faculty and I was addressing the group and
that was something we were speaking about was that very idea
(26:46):
that if you cannot tell, always assume
that the child, in this case the student, can understand. You
know, they may not be able to show that through facial movements, through
vocalization, et cetera. But let's err on the side of
Yeah, that's brilliant. I think that can go a long way for
(27:07):
lots of different situations. Yeah. So, gosh,
your journey has been so tough. What did you learn about
certainty and control? You know, you started this journey
as a certain path toward family and you
did get, you have a family, you will continue to have
a family, but it's certainly not what you originally signed
(27:28):
up for. How have you reconciled that within yourself? What have you
Yeah. You know, I thought that I could control
the situation. Even when she got the diagnosis, I thought, OK,
well, then I will fix it. Yeah. Right. Like, OK, I'll
go figure it out. I will figure it out. Yeah, we'll cure mitochondrial
disease, even though like an hour ago, I didn't know what mitochondria were. You
(27:49):
know, I really took it up myself to try to, you know, find
those clinical trials and figure things out. And obviously that
was a fantasy. And what I
learned was I can't control the trajectory here.
I can control the next hour of what we're going to do. I
can control whether we're going to make the next
(28:11):
hour full of joy. I can control how
we are going to approach the situation, right? So
You know, and I wonder, in retrospect, I don't know that this was a
like, OK, Jesse, you know, self-talk. I can't control this, but I
can't control this. I think it just kind of is what happened. And my
emphasis really shifted from trying to control
(28:34):
the ultimate outcome, which was, like I said, fantasy,
and instead trying to create as much of a
childhood for all three of the kids as I could.
because there's so much heaviness, even aside
from the underlying or overlying, you
know, both grief and sadness and all the other stuff. There's so
(28:57):
much heaviness in terms of just the minute by minute living
on the precipice, the intense medical care, the doctor's appointments. It's
so heavy. And here, you know, Diane is a kid. She
just wants to be like an 11 year old or whatever. Right. And the same
with the siblings. And so how do we do that? How do we fuse that
kind of joy and levity and light into
(29:20):
Ah, such a challenge. But it sounds like you realized what you
have control over, which is kind of shaping the ethos
of your family. I mean, you can't control the other members of your family to
go along with it, but you can at least set an example or set the tone as
the parent of what our family is going to be like
this. Yes. And within yourself, you can present
(29:42):
yourself. You're in your own control of what you present in
Right. Exactly. Exactly. And, you know, it
was all during this time that I wrote my book. I will say, you
know, the book was actually complete. before Dahlia died. This
is in no way, shape or form, as you know, since you read it, it's not a book about Dahlia's death.
It was a book about our journey with her. And
(30:05):
I think, you know, also when we write what's happening in our lives, it
gives us an opportunity to have a bit of control, since we're
talking about control right now, control of the narrative, right? Because
it is so out of your control. So if I'm going to write it, this is my experience of
Yeah, writing is a great tool. People use that in therapy all the time, journaling
(30:26):
or Specific writing prompts writing is extremely helpful.
Yeah, I was also just You
know, I feel so much compassion toward you and empathy because
I see myself in you a lot. And my son struggles
with different things, but I've also had to learn that I can't
control him. I can't control the progression of his disease of addiction,
(30:48):
mental health issues. All I can control is how I show up
for him and what resources I provide for him. I can't control
if he's going to take them or if he'll follow through with any of it
or anything like that. So I feel like this
It's so hard. And the mental health stuff is so challenging. And
in many respects, it can feel more challenging than
(31:10):
the medical because you feel like the person who's going through it,
well, come on, just come on. And
it's so unpredictable. And I
remember a friend of mine was in a class in
the The professor said, listen, your kid is about to
go on a roller coaster. There's going to be ups and
(31:32):
downs and highs and lows and this and that and the other thing, and your kid's going to be screaming. And
your job as the parent is not to get on the
ride. You can stay down below. You
could be cheering them on. You could be sending your support, doing whatever, but
don't get on the ride. And I have felt, because I've dealt with a lot, it's not only
the medical stuff, there's been a whole host of other things in
(31:52):
the family. And I have felt like, oh
no, I want to be strapped right in next to my kid. I want to be holding my
kid's hand. I want to be You know, and that doesn't serve us. And it ultimately
It's super hard. It's a similar metaphor. But like my
kid is out in outer space spinning around, like in that gravity movie
(32:16):
Yeah, like that. Yeah. Terrifying. And if I don't stay
tethered as a parent to something's holding me
still, I'm going to be out there floating around too. And then neither
of us are helping anybody and we're bumping into each other and getting
lost further. One of us has to stay tethered and
calm, as calm as possible. But God, it's
(32:37):
so hard. It's like the journey of a lifetime to figure this stuff out.
Yeah. And you got two others that
Yeah. And who saw things that most people just
don't ever, like I was saying, watching your
(32:59):
sibling's eyes get taped shut, you know? I mean, things that just
Yeah. I'm sure they're going to have to work through a lot of stuff. It's
not their fault or anybody's fault. Just that's what happened in
that lifetime. Did you ever find out
Yes, such a good question. So, you know, it's really interesting because
(33:23):
of the three children, the only birth mother we met was
Dahlia's. Okay. And we met her twice. And we
met the birth grandmother. And I say that because MIRF syndrome is
almost always maternally passed out. Okay. So the
chances are that both her birth mother and birth grandmother had it.
and the chances are overwhelming that they didn't know. It's
(33:44):
so rare and it is unlikely that it
was diagnosed in Guatemala. So what happened was we met
them when we first
brought Dahlia home and we had a lovely, lovely time
with them. And it was such a gift to be able to meet them.
And they were just so lovely and vivacious. And
(34:06):
it was it was really such a special memory. And then when
we went back to Guatemala, we went five times to Guatemala. The
next trip, we saw them again. And what
happened was the birth mother was visibly
ill. She had lost a tremendous amount of weight. She had been slim to begin with,
and she needed a lot of support from her mother,
(34:27):
from Dahlia's birth grandmother, to walk. And
we asked what's going on, and they said, we don't know. We think it's her stomach or
something. They didn't know. And of course, all of this is through a translator. We
really didn't think much of it. We didn't know that what we were witnessing at
that point was really going to dictate every single thing about the
Yeah. And so then, of course, you know, one of
(34:50):
the first things as soon as Dahlia was diagnosed was to try to
get in touch with them. But that did not end up happening. It
did not end up being possible. We were never able to locate them.
So we don't know what what happened, but it's pretty certain that
they had MIRF syndrome. And again, I
I'm sure. Yeah. Well, and it's so tricky, you know, when you
(35:12):
have a biological kid, no one knows what's going to happen. This idea of
certainty in any context of parenting is kind of wishful thinking. But
especially with adoptive parenting, you really don't know, especially
adopting from another country where the services and prenatal care may not
have been great or, you know, we have no idea. We have no idea. What
advice do you have for adoptive parents or hopeful adoptive parents,
(35:34):
people that maybe wish to adopt someday? I don't
know. From what you've learned, how would you have set yourself up differently if
I love the question because I feel like, you know, people might hear my story and
say, oh, my God, I'm not going to adopt because who knows and blah, blah, blah. So I want to say a few
things about it. Number one, I am very involved in
the rare disease community now, and I know many, many, many families. And
(35:57):
I don't think I know any. I have to check
with my internal Rolodex, but they're all biological
family. And most of the time, the parents weren't aware that
they were either carrying something or whatever, you know, so. this can
happen. People end up having conditions, diseases, whatever, no
matter how they come. And I will tell you, it was very interesting because when
(36:19):
we were adopting, as I'm sure you know, many of the listeners, we had to go to
some kind of like group session ahead of time. And
there was one guy there and I remember he said, well, what happens if something's wrong with the kid?
Can we, essentially he was asking like, is there a return policy? And my
husband and I were like, what? But I will say that
my sister, who was 100% biologically related to
(36:40):
me, died when she was 30. She had
a cardiac event. She had something that she had been
born with that people didn't know about. And she was 100% biologically
connected. So I guess I feel like we never
know. No matter how these babies come to us, we do not know. Parenthood
is a leap of faith. And so there is
(37:02):
no guarantee if we adopt, there is no guarantee if we have our kids
biologically, period. And I also understand when
people say, but I don't want to take a risk. I didn't want to sign up.
I never would have signed up for it. And in fact, I didn't because
as you know, you have to do a checklist. Like I'm
okay with this. I'm okay with that. And I was like, I don't want any of it. I didn't sign up
(37:24):
for any of it. And yet I never, ever
thought why me or I wish I had known. In fact, I
thought, thank God I didn't know. Because by five years
old, when Dahlia was diagnosed, she was my baby. I was her mom. Thank God
we hadn't known because we were meant to be together. It was
so clear that we were, without sounding too woo-woo or
(37:45):
whatever, we absolutely belong together. And that's
what happened. But I just feel like there are no guarantees. I
cannot even tell you how many families I know where
the kids end up having some really, really tricky
(38:06):
We deal with whatever comes up. Yeah. And even, you know, I mean, here's one of
the things, right? We find out that we can deal with it. I didn't think
I could deal with this so much so that I didn't check it off on those forms. Yeah.
And then you deal with it and you realize we're capable of so much more
The universe says here, two on this. Figure this out.
Oh, man. So painful and so beautiful. Like
(38:29):
you said, there's so much beauty and light
within this very dark and sad situation. And
I can hear that and read it in your book and see it in your face. And I'm
so glad you are sharing your story. I think we all can learn from
your story of releasing control, loving what
is in front of us, accepting whatever is in
(38:55):
Oh, thank you so much for having me. And, you know, I do share a lot of stories. So
please, listeners, I'd love for you to check out the book Breathtaking. And
on my website, I do a lot of writing now. A lot of it obviously is about grief, but
I just define stories dot com. And then, you know, I
have a podcast where I talk to people whose lives seem unimaginable. And
a lot of those are families that are struggling
(39:16):
with things that from the outside look really unbearable. I
I don't know how you do it. All of us who hear that all the
time, right? When people say, I don't know how you do it. I'm like, well, what choice do
I have? You know, but here we get into it and we talk about
Yeah. Well, you're doing a lot of great work in the world. What's the best way
(39:38):
for people to get a hold of you? Is that your blog page? Yes.
Well, first of all, I love connecting with people on social media, Instagram. So
my last name is F like Frank E-I-N. That's the first thing
that people might get messed up about. But it's jessicafinestories.com
is my website. And that's kind of the
hub of everything that's going on. And then again, Instagram is
(40:02):
Okay, I'll put all those links and connections in the show notes.
So everyone go look that up. Thank you so much, Jessica. I'm so
glad we connected. I really feel a heart connection with you. And I
am with you as you continue this journey, this tough,
tough journey of parenting and humaning. So
(40:23):
And listeners, thank you for listening and for engaging
with us here at Unraveling Adoption. Find us at unravelingadoption.com. You'll
find a list of calendar events and
there's many resources such as the Healing the Adoption Constellation
database on there. All of our podcast episodes can
be found there and just a plethora of information. If
(40:46):
any of you would like to support what we're doing here at Unraveling Adoption and
enable us to continue having these commercial free episodes and
other free resources, please support us at
Patreon. You can do so by signing up for as
little as $5 a month at patreon.com slash unraveling
adoption. Thank you to all the wonderful Patreon supporters who
(41:07):
help us out each month. Thank you all for listening. Jessica
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