Welcome to Unlimited Parenting, where we discuss what it's like having children with disabilities
or special health care needs.
My name is Allison and I am so excited to be joined today by speaker, podcast host,
advocate and author Jessica Fien to discuss her book, Breathtaking, a memoir of family,
dreams and broken genes.
Well, thank you so much for being here and taking time out of your day to share this
story.
We are Idaho Parents Unlimited, so we are over here in Idaho and we are very excited
to have a unique perspective from someone who is parenting a child with a disability
on the East Coast.
So I wanted to start by asking you if you could describe a little bit about Dahlia's
diagnosis before I get into some other questions.
Absolutely.
So my daughter Dahlia was diagnosed at age five with Murph syndrome, which is an ultra
rare kind of mitochondrial disease.
And at the time, what made me seek a diagnosis was feeling like, you know, something's not
quite right.
And I think as parents, a lot of us have this niggling feeling, something just seems a bit
off.
And, you know, I tried to make sure that I wasn't comparing her too much to her sibling
or helicoptering or doing all of those things.
And yet I just felt like, you know, her walking was a bit wobbly, her speech was garbled,
you know, there were things.
So I reached out, we have here early intervention, which will come to your house for free before
age three and do the assessment and say whether or not there's, you know, some kind of therapy
called for.
And they said, no, no, no, she's fine.
And a few months passed and I had them come out again and a few months passed.
And now they were like, oh God, not her again when I would call.
Right.
But I had them go out a third time and each time they said, she's on the lower end of
average, but she will catch up.
And Dalia was adopted from another country, from Guatemala.
So there was also this question mark of maybe she's a bit behind because, you know, of what
happened in her early days or prenatal.
We just didn't have really very much information to go on.
And then came the first diagnosis, which was actually hearing loss.
And that was a mild to moderate hearing loss and it was unexplained.
And I will say for your families and your listeners, like, it's interesting how, first
of all, one diagnosis can lead to another, can lead to another, can lead to another,
but also how as parents we become so much more comfortable with things that at first
might cause, excuse me, such discomfort.
So for me, the hearing loss was like, it was mild to moderate.
It could be fixed with hearing aids.
That was the diagnosis.
And I thought the sky was falling.
And I look back at the me of then, you know, and I'm like, okay, honey, it could be, and
it would be a lot, lot, lot worse.
But I understand that at that time that was really devastating.
In any event, because that hearing loss was unexplained, we were sent for genetic testing.
It was, we didn't know about the genes.
We didn't know about why she had the hearing loss.
So we were sent for genetic testing.
And you know, I know so many families where their diagnostic odyssey is years and where
they have to fight for genetic testing.
And that just simply wasn't the case for us because once she went for genetic testing,
the diagnosis was immediate, which is she's got this degenerative disease, this mitochondrial
disease.
And I knew nothing.
I mean, I knew nothing about what mitochondria were.
I didn't know what they did, why we needed them, you know, like, okay, her mitochondria
don't work.
Let's do a mitochondrial transplant.
You know, I mean, I didn't understand what it meant.
And I didn't really understand what a degenerative disease meant.
I didn't, I mean, I understood the word, but I didn't understand what the trajectory would
be, what it would look like.
And in fact, they couldn't really tell us because it's a rare disease.
So when we talk about special needs and disability, I really, from the parent perspective, went
through the whole gamut from something that was correctable and kind of, I mean, she wore
hearing aids, but you couldn't really see it all the way through to Dahlia losing the
ability altogether to walk and being in a wheelchair and losing the ability ultimately
to speak and to eat and to breathe without the assistance of a ventilator.
And it was so, so, so slow.
And also it seems so fast.
I will share with your listeners that Dahlia died one week after her 17th birthday.
So this was a journey of 12 years of different kinds of disabilities, different kinds of
intensity, different kinds of treatments, of therapies.
And yeah, so that's a bit of the story.
Is this compounded by the fact that it was an adoption?
Did you know much about her biological parents' medical history before that?
Or was there not a lot of knowledge on that?
There wasn't a lot of knowledge on that.
And I will tell you two quick stories about that.
Number one, we actually met Dahlia's birth mother.
I have adopted three children and I've only met one of the birth mothers and it was Dahlia's.
And what's so interesting about that is we met her and she was vibrant and healthy-seeming
and beautiful and engaging and we had a beautiful, beautiful interaction.
Two years later we were back in Guatemala and we met up with her again.
And now she was clearly very ill.
She needed assistance walking and she had lost a tremendous amount of weight and she
was slight to begin with.
Nobody knew what was wrong with her.
And in fact, it would be years before we figured it out because once we knew that Dahlia had
Murph syndrome, it was a virtual certainty that her mother did too.
It is a maternally inherited disease almost all the time.
And so that was...and this whole issue is part of what I talk about in my book because
we of course then wanted to find Dahlia's birth mother.
We were fairly certain she did not have a diagnosis.
It's very rare and difficult typically to diagnose even here in Boston, which is the...some
people will say the medical capital of the world.
We were fairly certain she didn't have a diagnosis.
We were not unable to locate her and we were never able to be part of her journey in the
way we would have been eager to had she wanted that.
The other piece about it is you asked, did we know anything?
And we didn't about Dahlia's early care, about her health history.
And I will tell you and I will share with the listeners that that is one of the things
in this world that I am most grateful for that we didn't know.
And the reason why is quite simple.
Had we known, had we found out that there was a little girl available for adoption who
had an insidious, rare degenerative disease, I would have said, we'll wait for the next
one on the list.
I didn't raise my hand for this.
And then I wouldn't have had my daughter because there's no question Dahlia was my daughter
and I was her mother and we were meant to be together.
So the fact that I didn't know was a real blessing.
By the time she was diagnosed, she couldn't have been any more mine and I hers.
I mean, you know, so I'm glad I didn't know.
Thank you for being so refreshingly honest and candid about obviously a very sensitive
topic and one that carries a lot of weight for you personally and just potentially even
for listeners.
But Kirin, it's very refreshing, your perspective.
If I can, can I circle back to part of Dahlia's care?
Because one of the things that I really took away from your book, Breathtaking, is that
you and your husband had these kind of distinct roles in Dahlia's care, right?
So yours was like a focus on advocacy and he was providing calm.
And how did these complement each other?
But then what challenges did you face on maintaining a united front?
And I really think it's really a continuing theme throughout the book, like even from
the very beginning when Dahlia, there's a story right at the very beginning where Dahlia
falls, and then you guys are taking her or she's at school as she falls, you guys rush
to the ER and you talk about a dance of one of you being calm and the other one being
the storm.
Yes.
And I love this question.
Thank you so much.
I will say first of all, I like talking about it because I think that we tend to have an
assumption that the mother is going to be the primary hands-on caregiver.
I saw this over and over again when we'd be in the hospital, in the doctor's offices with
at-home nurses.
They look at the mother first.
They'll say, well, mom, they expect the mom to be the one.
In our case, there is no question that my husband was the better hands-on caregiver.
And I am not saying that to put myself down.
I am saying it because it's true.
It was such intense medical care once Dahlia had a tracheotomy and she learned everything
there was to learn.
And there were some of it that was so intimidating and scary for me and he took that on so that
I didn't have to.
And the flip side is we had in-home nursing.
We needed Dahlia needed 24-7 eyes on care.
There was a lot of people coming in and out of the house.
He couldn't have even told you the name of the nursing agency.
I mean, I had spreadsheets.
I had all of that.
So it was really, really great.
And we were so fortunate that first of all, there were two of us.
I mean, I think about people going through this as single parent and I have such compassion
and admiration for what that must be like, but that we also were able to step up and
step in in different ways.
And that scene that you're talking about I think is a really important one because what
we learned early on was that it was better for one of us to be petrified, devastated,
freaking out at a time, right?
Because if we twirl together and that worry and fear, we collapse.
Much better for one of us to be in that place than the other one to be like, okay, I got
this.
You know?
And believe me, each of us had our times of freak out and despair and all the things,
but we tried not to get into it at the same moment.
And then I think that the taking turns allowing you to feel your feelings at the intensity
that they are and then coming back into yourself and being that calm.
Do you think that that...
Because there's also a part in your story where you kind of talk about, and maybe I'm
saying this wrong, but almost like a postpartum or like a ICU psychosis or something like
that that you experienced.
So how did that turn taking play into that experience?
Well, yes.
So we spent...
When Dahlia turned nine, she actually turned nine in the hospital.
We were in the pediatric intensive care unit for three months.
And my husband and I both had full-time jobs and we had two other young children at home.
Now first of all, we were very, very, very fortunate that we weren't both able to keep
our jobs and take leaves of absence because I know a lot of families in the PICU where
that was not the case.
Now that was one thing, but the other thing was we had to have this...
We had two other kids at home.
So what we did was we switched off every single night for three months.
One of us would be home with the other two kids and one of us would be in the hospital.
And then we just switched.
We were like two...
We were not two ships who passed in the night.
We were two ships who passed in the hallway of the ICU because that was the only way we
could do it over the course of three months.
I know a lot of families have to a much lesser degree a similar experience in the sense that
in order to make child care needs work, one parent will work in the morning and one parent
will work at night.
So it's very interesting to hear that from the perspective of a child who is in the hospital.
And you talk about having your two other kids, Jonah and Theo, at home.
And even in there's a chapter, Two Worlds, where you talk about navigating and managing
that vigilance and then maintaining normalcy for your other two children.
What are some of the strategies that you and your husband used when you were going back
and forth through all of these different things, supporting Dahlia, but then also giving them
their childhood?
Yes.
It's such a beautiful question.
And also thank you for such a careful reading of the book.
It became clear to us that we needed to try to whatever extent possible to give all three
of the kids a childhood.
Because even though we were in such an incredibly intense situation, even though we had nursing
in the house and my daughter's room looked like an ICU room, this was their childhood.
So there are ways that we created a life of joy and a life of meaning even in the midst
of these horrific circumstances for Dahlia and for the other two kids.
Your question was specifically about the others.
And some of the ways we did that was by my husband and I splitting up the time that we
spent with them.
And what I mean by that is Dahlia couldn't travel.
And so I started to take the kids on vacation, the other two by myself.
Wasn't something I would have ever really thought I would do.
And my husband did that once or twice as well.
Even that being kind of the extreme is going on vacation, there could be something about
taking them out to dinner or having special dates, either mommy dates or daddy dates
or whatever.
But really making sure to be deliberate about giving them the time that they needed.
And I will tell you that they were suffering.
And I will tell you that when we talk about special needs, we're not only talking about
the very intense, intense, unusual special needs that my daughter had, but we also had
different kinds of needs with our other children.
And I also will say that some of those other needs, which perhaps some of your listeners
are experiencing with their children, some of those learning needs and emotional needs
can be just as if not more stressful than medical needs, just different.
I'll say that that really resonates with me as a parent of three children who are all
three autistic and one has severe emotional behavioral disturbances that they are all
different levels of support needs, but they all feel so intensely sometimes the same level
of need.
And it's not just there's no break, right?
You're just vacillating between everyone's different needs.
I'd like to talk a little bit about your faith and how that may have played a role because
you you're Jewish, correct?
Yeah.
How did that faith help you through Shru Dalya and all of your other children?
And did that influence your perspective on suffering and resilience?
Oh, your questions are so good.
You know, I don't think that my religion necessarily like overtly impacted on my beliefs around
suffering and resilience, but it may have been subconscious.
And I will say that I've never had an illusion that life is fair.
I never had an illusion that life owed me anything.
So there wasn't any railing against why me?
This isn't fair.
I don't know if that comes from knowing historically about a lot of suffering.
I think for me, it probably comes from losing my sister when I was 27 and she was 30.
That was the pivotal switch in my life when I realized it's a little bit of a roulette
wheel that things happen that we could never expect that we can't explain.
And all of the losses I experienced after that one were really seen through the lens
of that first loss.
So you know, whether it was based on personal experience, whether it was based on having
seen my parents go through the loss of a child with my sister, even though she was 30, it
was a little bit different.
But what our religion did play a part was in the community and it was in Dahlia's love
for that community and primarily for the music.
The music in the religious services was something that just Dahlia loved and she could respond
to in such a joyous way and that brought all of us joy.
So sitting in the front row of a service where there's guitar and there's drums and the person
who's playing the guitar brings it over to Dahlia and lets her do some strumming and
she can't move anything but her shoulders and she's dancing with her shoulders and everybody's
finding joy in her joy.
And that's a gorgeous thing too, right?
She's emanating joy, which means other people are feeling joyful and throwing that joy back
at her.
And so that was a beautiful virtuous circle.
The other thing is making the decision to give Dahlia bat mitzvah, which is the Jewish
rite of passage for a 13 year old or 12 year old.
And that was a really, really tough decision because the premise is that you can chant
this blessing and Dahlia couldn't speak.
She couldn't walk, you know, and figuring out how to do that and really coming from
a place of let's focus on what Dahlia can do rather than what she can't.
And boy, learning that message was powerful and it's something that I use today, not just
with kids, you know, but when we think about people we're encountering and understanding
that there are things people can do and things they can't and what's going to be our starting
point in that interaction.
And I really, I appreciate that because music really can be a language when maybe people
don't have the ability to speak verbally.
So that sense of community and including her with the strumming of the guitar and you talk
in your book about your mom playing the piano and people gathering around, right?
And that sense of regardless of maybe what her abilities, Dahlia's abilities were, she
was included no matter what.
Oh yeah.
In every space that she was in, in your faith, in family, in everything.
So I appreciate you sharing that experience.
I also wanted to ask questions about decision-making when it came to Dahlia's education.
That is also very, I think very unique in her situation because she wasn't just an individual
potentially with a developmental disability.
She also had complex special healthcare needs, right?
So there's a section in your book where you talk about the Kennedy Day School and you
had some reservations and then ultimately you did.
So can you tell more about what was that process like for being a parent of a child with special
healthcare needs that were so complex?
Yes, absolutely.
So I call by the way, the Kennedy Day School, the best decision I never made because I rallied
against it.
I did not want Dahlia pulled out of the public schools.
And it's such an interesting journey because so many people are on the opposite side trying
to get their children out of the public schools and into a specialized school.
And that was not our case.
So when Dahlia's medical needs really became intense, that's when she had a tracheotomy
and was ventilator dependent.
And at the time she was in public school, she had a full-time aid.
She had had an aid for a while because she had all of these kind of learning needs.
And we started sending her to school with a private nurse who would take care of all
of her medical needs.
And so she had our private nurse that would go with her and she had a one-on-one aid provided
by the school.
And the school came to us and said, we need to explore other options for her.
And they started off by the way of saying it in a very much like, we're just going to
explore, we're just going to look into it, we're going to all be in this together.
That wasn't really the case.
The subtext was Dahlia can't stay in this school.
Well, I wasn't having it because I wanted Dahlia to stay in the school where she knew
people, where people knew her, where people celebrated her in our community.
That was what I wanted.
And they said, well, you need to go to look at these eight schools.
And I went to them and it's all in the book.
I won't go into the details, but I was devastated and horrified and just didn't see Dahlia in
those schools.
So we decided to fight the school system and that didn't go very well.
Ultimately, what they ended up saying to us is, look, we got all the way to mediation.
We didn't go to trial because what they said to us was, look, no judge is going to find
a school that says, we do not believe we can keep your child safe and we're willing to
pay huge amounts of money, the school system, to send her to a specialized school.
No judge is going to say, no, you got to keep her, right?
That's not going to happen.
And so ultimately we realized we didn't have a choice and so reluctantly we moved her.
And it is one of the things that I am so grateful that I didn't have a choice about because
the Kennedy Day School was the perfect place for her, especially, you know, her disease
continued to progress.
The people there were so skilled and beautiful people who really, really talk about focusing
on what a kid can do and not what they can't.
And Dahlia was surrounded by other people who had varying needs.
I mean, some like hers, some more intense, some less intense, but it didn't matter and
the school was equipped to deal with all of it.
And the school was equipped to figure out how these kids could do things that no way
they could have done in a mainstream environment.
It was such a perfect, beautiful place for her.
And I'm so grateful to every single person associated with that school and who works
at that school and so glad that people knew better than I did.
I think that that's really, again, another really powerful part of this story because,
you know, in part of our work as a parent training information center, we assist and
provide resources to parents when they are having disputes with their school, just like
you did.
And, you know, we're giving parents what they can expect when they go into mediation.
And then it is really hard when you get told, no, this is your only option.
But to hear from a parent who based their only option, Dahlia went to it and you loved
it and you're grateful for that experience, I think it's just a really refreshing perspective
that we as Parent Training Information Center, we don't get to hear that very often.
And I think it's really powerful for other parents to hear too.
But at the end of the day, I'm really glad that the Kennedy Day School did work out and
she did see benefit from that.
Yes.
I do also want to touch on another part of the book about Dahlia being involved in that
drug trial and that her inclusion in that took a lot of creativity and persistence.
What lessons did you learn from that about advocacy in the health care system?
Yeah, you know, I fought and fought and fought to get Dahlia to find a clinical trial, then
to get Dahlia into a clinical trial.
I mean, this took years.
And then finally she got accepted.
And first of all, I completely had a fantasy in my mind.
I mean, this was a clinical trial, trial being the operative word.
And I was like, this is a cure.
She's going to be clinical and la la la.
And we were ready.
I mean, it was taking place.
We're outside of Boston.
It was in D.C. and we were ready.
We had the plane tickets.
We had everything.
We were going to go every month, the whole thing.
And at the last minute, she was pulled from the study because she was deemed not healthy
enough to participate.
And so I learned a lot there.
I learned that there are some things that no matter how we as parents, no matter how
hard we try, how much we educate ourselves, how much research we do, there are some times
when it's not going to go our way.
I mean, I offered everything.
I'll drive her.
I'll do this.
I'll do that.
No.
Ultimately, I don't want to give away too much, but ultimately, she did get into that
same trial, moved to Boston and changed names, but it was the same drug.
And near the end, we did get her into that trial.
Mostly it was going to be something that would hopefully provide some information for other
children.
And Dahlia's disease was quite progressed by that point.
But boy, I will tell you, in that case, it didn't work out.
But advocacy, there is so much I learned and so much that did work out.
And so I feel like every day was advocating for one thing or another.
And I will just say, one of the beautiful things I learned, it happened twice where
I advocated and advocated and advocated for something to happen.
And then when it happened, it wasn't only for Dahlia, it ended up being able to be for
a whole slew of children.
And so that was really gratifying.
That Dahlia's just even at the base level, just her existence supported so many other
children.
Yeah.
And just not even just that, but your advocacy efforts and all of these things supported
so many other children.
So huge shout out to you as well.
And your husband as a supporting actor.
In the book, you also mentioned that Dahlia's mission was to embody joy and love, you know,
kind of despite everything.
How is that in her memory inspiring you and your family and her loved ones today?
Oh, in every single way, because I think about that all the time.
And I think about my goodness, this human being who had everything taken away from her
and had every reason to be angry and to be bitter and to not want to even get out of
bed.
She just wanted to go out there and be her sweet, kind, joyous self.
And if she could do that, then boy, I need to make sure that I'm doing that in her honor.
And one of the ways is working with Mito Action to run a program called Dahlia's Wish where
we send children and their families to give kids the world village and to Disney to have
a week of joy and to have those memories and to create that for the whole family, not just
for the child, but for the parents and the siblings too.
Do your other children now have any words or anything that they want other siblings
of children with special healthcare needs to know or how are they navigating this?
It's hard and they're very different from each other.
And I think they look at it as they mature through different sets of lenses.
I think both of them feel she, they have used this word, so I'm not putting words in their
mouth.
I think both of them felt she was their biggest teacher.
They felt she was their biggest cheerleader.
They feel very much that she is their sister to this day.
They were really, really, really tight.
I as the mother feel like they are more empathic, more compassionate, more inclusive, kinder
people than most of the people I encounter.
Maybe that has to do with other things, but I think to a certain extent it has to do with
having the good fortune to be Dahlia's siblings.
That's very sweet of them.
I also want to ask, and this is probably more a question for me, but I hope that it also
helps some of our listeners.
What advice do you offer to someone who, like me, isn't going through this situation themselves,
but wants to offer love and support to a friend who's going through the most extreme kind
of hardship like you did?
You are.
Again, I love that question because I think we're so uncomfortable around it so much of
the time that we either don't really show up or we do something like, hey, let me know
if there's anything I can do.
When you say, let me know if there's anything I can do, what you're doing is you're putting
the burden of figuring out what you can do on the person.
Instead of saying, first of all, educating yourself.
Educate yourself about whatever it is the child's diagnosis is.
That goes a long way because the person doesn't want to describe it 100 million times a day.
That's number one.
Number two, and all of it depends on what your relationship is, but there is a huge,
huge, huge value in getting over your own discomfort and sitting with the person in
their sadness or in their whatever emotion they're going through.
Being with them.
Your presence means so much.
Now, they may have really practical needs too.
They may need, for example, somebody who's going to take the other kids out to ice cream
because guess what?
They can't do that right now because they're focused on the other kid.
So maybe it's paying a special attention to the siblings.
Maybe it's making a menu of things and saying, here, friend, I thought of like 10 things
that might be useful.
Just check off if there's anything here, you know, taking your kids out to ice cream, taking
your dog for a walk, mowing your lawn, taking you out to coffee, you know, whatever the
thing is, but just coming up with some ideas and giving those ideas to the friend.
I could go on and on.
I have articles about this.
I should go to my website.
I've got articles.
I've got the whole thing because I'm so passionate about this topic.
And mostly it's because, you know, I had no clue.
I didn't know what to do or what to say, not only when people are suffering, but, you know,
through grief, through loss, through sickness.
I had no idea.
And I think that as a society, we have a lot to learn.
And sometimes we just only learn because we've went through it like I did.
And so then I want to share it with other people.
I thank you.
I appreciate that.
I love the idea of creating a menu and giving it to someone and saying, you know, just check
off three, five things from this that I can do to help you because people just really,
people want to support and oftentimes will say well-meaning things that just aren't the
right thing at the right time.
And just hearing these concrete examples of what someone like I could do to help support
someone is going to be really, really meaningful.
And I think another thing people can do if they want to know more is to read this beautiful
book, Breast-Taking, in honor of your sweet daughter and your other children.
And I just want to say that I loved this book.
And there were times where it really was a really hard read.
And it's just the beauty, it turns into these beautiful moving moments.
And I just want to say thank you.
Thank you for sharing that with us because it had to have been beyond the pale of impossible
to live it and then have your other children and then you're working and your husband's
working and you're writing this book.
But yet you still took Dahlia's joy and her experience to give you the fuel for the fire
to share it with the world.
So I mean, I'm just beyond grateful that I got the opportunity to read this book and
we are going to share a link to the book in the description.
We'll obviously very much share your website.
And I just want to say a huge thank you for your time and taking this just heart wrenching
experience and turning it into something that we can all benefit from.
Thank you so much.
And I will say because I know a lot of your listeners are going through challenges and
if people want to read this book as part of their book club, I'm happy to come in and
I mean, I know you're far away, but listeners presumably are everywhere, whether that's
zooming in or if it's local to me by any chance to be part of conversations.
Because if people are interested in having these conversations and reading the book together,
I'm finding that the book club conversations are something people are getting a lot out
of.
So I just wanted to put that out there.
Yeah, absolutely.
I think I know of actually quite a few people who would be wanting to take advantage of
it who are avid readers, much like yourself, because books and quotes kind of and letters
that family members have written are also very much a theme.
But I am out here giving away the whole book, so I will try to rein in it.
Thank you so much, breathtaking, absolutely a beautiful book.
I hope everyone reads it.
Jessica, thank you so much for your time.
Thank you so much.
Thank you so much, everyone out there for listening in and know that if you are in Idaho
or planning on moving to Idaho and have questions on systems or services for children with disabilities,
please consider reaching out to us on our website at iPull Idaho.
That's I-P-U-L Idaho.org or by calling us at 208-342-5884.
Be sure to tune in next time.
Until then, this has been Unlimited Parenting.
Thanks for listening.
I'm there.