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Welcome to Unlimited Parenting, where we discuss what it's like having children with disabilities

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or special health care needs.

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My name is Allison and I am so excited to be joined today by speaker, podcast host,

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advocate and author Jessica Fien to discuss her book, Breathtaking, a memoir of family,

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dreams and broken genes.

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Well, thank you so much for being here and taking time out of your day to share this

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story.

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We are Idaho Parents Unlimited, so we are over here in Idaho and we are very excited

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to have a unique perspective from someone who is parenting a child with a disability

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on the East Coast.

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So I wanted to start by asking you if you could describe a little bit about Dahlia's

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diagnosis before I get into some other questions.

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Absolutely.

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So my daughter Dahlia was diagnosed at age five with Murph syndrome, which is an ultra

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rare kind of mitochondrial disease.

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And at the time, what made me seek a diagnosis was feeling like, you know, something's not

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quite right.

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And I think as parents, a lot of us have this niggling feeling, something just seems a bit

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off.

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And, you know, I tried to make sure that I wasn't comparing her too much to her sibling

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or helicoptering or doing all of those things.

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And yet I just felt like, you know, her walking was a bit wobbly, her speech was garbled,

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you know, there were things.

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So I reached out, we have here early intervention, which will come to your house for free before

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age three and do the assessment and say whether or not there's, you know, some kind of therapy

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called for.

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And they said, no, no, no, she's fine.

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And a few months passed and I had them come out again and a few months passed.

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And now they were like, oh God, not her again when I would call.

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Right.

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But I had them go out a third time and each time they said, she's on the lower end of

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average, but she will catch up.

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And Dalia was adopted from another country, from Guatemala.

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So there was also this question mark of maybe she's a bit behind because, you know, of what

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happened in her early days or prenatal.

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We just didn't have really very much information to go on.

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And then came the first diagnosis, which was actually hearing loss.

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And that was a mild to moderate hearing loss and it was unexplained.

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And I will say for your families and your listeners, like, it's interesting how, first

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of all, one diagnosis can lead to another, can lead to another, can lead to another,

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but also how as parents we become so much more comfortable with things that at first

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might cause, excuse me, such discomfort.

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So for me, the hearing loss was like, it was mild to moderate.

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It could be fixed with hearing aids.

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That was the diagnosis.

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And I thought the sky was falling.

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And I look back at the me of then, you know, and I'm like, okay, honey, it could be, and

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it would be a lot, lot, lot worse.

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But I understand that at that time that was really devastating.

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In any event, because that hearing loss was unexplained, we were sent for genetic testing.

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It was, we didn't know about the genes.

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We didn't know about why she had the hearing loss.

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So we were sent for genetic testing.

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And you know, I know so many families where their diagnostic odyssey is years and where

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they have to fight for genetic testing.

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And that just simply wasn't the case for us because once she went for genetic testing,

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the diagnosis was immediate, which is she's got this degenerative disease, this mitochondrial

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disease.

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And I knew nothing.

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I mean, I knew nothing about what mitochondria were.

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I didn't know what they did, why we needed them, you know, like, okay, her mitochondria

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don't work.

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Let's do a mitochondrial transplant.

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You know, I mean, I didn't understand what it meant.

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And I didn't really understand what a degenerative disease meant.

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I didn't, I mean, I understood the word, but I didn't understand what the trajectory would

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be, what it would look like.

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And in fact, they couldn't really tell us because it's a rare disease.

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So when we talk about special needs and disability, I really, from the parent perspective, went

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through the whole gamut from something that was correctable and kind of, I mean, she wore

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hearing aids, but you couldn't really see it all the way through to Dahlia losing the

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ability altogether to walk and being in a wheelchair and losing the ability ultimately

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to speak and to eat and to breathe without the assistance of a ventilator.

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And it was so, so, so slow.

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And also it seems so fast.

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I will share with your listeners that Dahlia died one week after her 17th birthday.

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So this was a journey of 12 years of different kinds of disabilities, different kinds of

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intensity, different kinds of treatments, of therapies.

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And yeah, so that's a bit of the story.

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Is this compounded by the fact that it was an adoption?

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Did you know much about her biological parents' medical history before that?

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Or was there not a lot of knowledge on that?

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There wasn't a lot of knowledge on that.

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And I will tell you two quick stories about that.

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Number one, we actually met Dahlia's birth mother.

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I have adopted three children and I've only met one of the birth mothers and it was Dahlia's.

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And what's so interesting about that is we met her and she was vibrant and healthy-seeming

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and beautiful and engaging and we had a beautiful, beautiful interaction.

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Two years later we were back in Guatemala and we met up with her again.

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And now she was clearly very ill.

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She needed assistance walking and she had lost a tremendous amount of weight and she

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was slight to begin with.

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Nobody knew what was wrong with her.

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And in fact, it would be years before we figured it out because once we knew that Dahlia had

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Murph syndrome, it was a virtual certainty that her mother did too.

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It is a maternally inherited disease almost all the time.

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And so that was...and this whole issue is part of what I talk about in my book because

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we of course then wanted to find Dahlia's birth mother.

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We were fairly certain she did not have a diagnosis.

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It's very rare and difficult typically to diagnose even here in Boston, which is the...some

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people will say the medical capital of the world.

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We were fairly certain she didn't have a diagnosis.

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We were not unable to locate her and we were never able to be part of her journey in the

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way we would have been eager to had she wanted that.

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The other piece about it is you asked, did we know anything?

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And we didn't about Dahlia's early care, about her health history.

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And I will tell you and I will share with the listeners that that is one of the things

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in this world that I am most grateful for that we didn't know.

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And the reason why is quite simple.

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Had we known, had we found out that there was a little girl available for adoption who

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had an insidious, rare degenerative disease, I would have said, we'll wait for the next

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one on the list.

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I didn't raise my hand for this.

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And then I wouldn't have had my daughter because there's no question Dahlia was my daughter

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and I was her mother and we were meant to be together.

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So the fact that I didn't know was a real blessing.

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By the time she was diagnosed, she couldn't have been any more mine and I hers.

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I mean, you know, so I'm glad I didn't know.

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Thank you for being so refreshingly honest and candid about obviously a very sensitive

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topic and one that carries a lot of weight for you personally and just potentially even

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for listeners.

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But Kirin, it's very refreshing, your perspective.

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If I can, can I circle back to part of Dahlia's care?

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Because one of the things that I really took away from your book, Breathtaking, is that

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you and your husband had these kind of distinct roles in Dahlia's care, right?

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So yours was like a focus on advocacy and he was providing calm.

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And how did these complement each other?

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But then what challenges did you face on maintaining a united front?

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And I really think it's really a continuing theme throughout the book, like even from

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the very beginning when Dahlia, there's a story right at the very beginning where Dahlia

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falls, and then you guys are taking her or she's at school as she falls, you guys rush

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to the ER and you talk about a dance of one of you being calm and the other one being

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the storm.

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Yes.

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And I love this question.

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Thank you so much.

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I will say first of all, I like talking about it because I think that we tend to have an

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assumption that the mother is going to be the primary hands-on caregiver.

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I saw this over and over again when we'd be in the hospital, in the doctor's offices with

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at-home nurses.

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They look at the mother first.

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They'll say, well, mom, they expect the mom to be the one.

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In our case, there is no question that my husband was the better hands-on caregiver.

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And I am not saying that to put myself down.

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I am saying it because it's true.

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It was such intense medical care once Dahlia had a tracheotomy and she learned everything

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there was to learn.

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And there were some of it that was so intimidating and scary for me and he took that on so that

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I didn't have to.

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And the flip side is we had in-home nursing.

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We needed Dahlia needed 24-7 eyes on care.

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There was a lot of people coming in and out of the house.

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He couldn't have even told you the name of the nursing agency.

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I mean, I had spreadsheets.

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I had all of that.

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So it was really, really great.

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And we were so fortunate that first of all, there were two of us.

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I mean, I think about people going through this as single parent and I have such compassion

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and admiration for what that must be like, but that we also were able to step up and

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step in in different ways.

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And that scene that you're talking about I think is a really important one because what

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we learned early on was that it was better for one of us to be petrified, devastated,

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freaking out at a time, right?

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Because if we twirl together and that worry and fear, we collapse.

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Much better for one of us to be in that place than the other one to be like, okay, I got

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this.

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You know?

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And believe me, each of us had our times of freak out and despair and all the things,

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but we tried not to get into it at the same moment.

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And then I think that the taking turns allowing you to feel your feelings at the intensity

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that they are and then coming back into yourself and being that calm.

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Do you think that that...

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Because there's also a part in your story where you kind of talk about, and maybe I'm

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saying this wrong, but almost like a postpartum or like a ICU psychosis or something like

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that that you experienced.

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So how did that turn taking play into that experience?

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Well, yes.

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So we spent...

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When Dahlia turned nine, she actually turned nine in the hospital.

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We were in the pediatric intensive care unit for three months.

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And my husband and I both had full-time jobs and we had two other young children at home.

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Now first of all, we were very, very, very fortunate that we weren't both able to keep

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our jobs and take leaves of absence because I know a lot of families in the PICU where

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that was not the case.

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Now that was one thing, but the other thing was we had to have this...

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We had two other kids at home.

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So what we did was we switched off every single night for three months.

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One of us would be home with the other two kids and one of us would be in the hospital.

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And then we just switched.

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We were like two...

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We were not two ships who passed in the night.

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We were two ships who passed in the hallway of the ICU because that was the only way we

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could do it over the course of three months.

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I know a lot of families have to a much lesser degree a similar experience in the sense that

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in order to make child care needs work, one parent will work in the morning and one parent

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will work at night.

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So it's very interesting to hear that from the perspective of a child who is in the hospital.

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And you talk about having your two other kids, Jonah and Theo, at home.

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And even in there's a chapter, Two Worlds, where you talk about navigating and managing

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that vigilance and then maintaining normalcy for your other two children.

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What are some of the strategies that you and your husband used when you were going back

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and forth through all of these different things, supporting Dahlia, but then also giving them

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their childhood?

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Yes.

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It's such a beautiful question.

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And also thank you for such a careful reading of the book.

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It became clear to us that we needed to try to whatever extent possible to give all three

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of the kids a childhood.

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Because even though we were in such an incredibly intense situation, even though we had nursing

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in the house and my daughter's room looked like an ICU room, this was their childhood.

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So there are ways that we created a life of joy and a life of meaning even in the midst

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of these horrific circumstances for Dahlia and for the other two kids.

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Your question was specifically about the others.

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And some of the ways we did that was by my husband and I splitting up the time that we

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spent with them.

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And what I mean by that is Dahlia couldn't travel.

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And so I started to take the kids on vacation, the other two by myself.

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Wasn't something I would have ever really thought I would do.

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And my husband did that once or twice as well.

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Even that being kind of the extreme is going on vacation, there could be something about

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taking them out to dinner or having special dates, either mommy dates or daddy dates

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or whatever.

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But really making sure to be deliberate about giving them the time that they needed.

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And I will tell you that they were suffering.

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And I will tell you that when we talk about special needs, we're not only talking about

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the very intense, intense, unusual special needs that my daughter had, but we also had

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different kinds of needs with our other children.

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And I also will say that some of those other needs, which perhaps some of your listeners

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are experiencing with their children, some of those learning needs and emotional needs

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can be just as if not more stressful than medical needs, just different.

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I'll say that that really resonates with me as a parent of three children who are all

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three autistic and one has severe emotional behavioral disturbances that they are all

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different levels of support needs, but they all feel so intensely sometimes the same level

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of need.

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And it's not just there's no break, right?

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You're just vacillating between everyone's different needs.

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I'd like to talk a little bit about your faith and how that may have played a role because

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you you're Jewish, correct?

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Yeah.

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How did that faith help you through Shru Dalya and all of your other children?

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And did that influence your perspective on suffering and resilience?

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00:17:06,040 --> 00:17:10,760
Oh, your questions are so good.

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You know, I don't think that my religion necessarily like overtly impacted on my beliefs around

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suffering and resilience, but it may have been subconscious.

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And I will say that I've never had an illusion that life is fair.

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I never had an illusion that life owed me anything.

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So there wasn't any railing against why me?

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This isn't fair.

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I don't know if that comes from knowing historically about a lot of suffering.

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I think for me, it probably comes from losing my sister when I was 27 and she was 30.

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That was the pivotal switch in my life when I realized it's a little bit of a roulette

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wheel that things happen that we could never expect that we can't explain.

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And all of the losses I experienced after that one were really seen through the lens

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of that first loss.

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So you know, whether it was based on personal experience, whether it was based on having

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seen my parents go through the loss of a child with my sister, even though she was 30, it

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was a little bit different.

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But what our religion did play a part was in the community and it was in Dahlia's love

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for that community and primarily for the music.

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The music in the religious services was something that just Dahlia loved and she could respond

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to in such a joyous way and that brought all of us joy.

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So sitting in the front row of a service where there's guitar and there's drums and the person

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who's playing the guitar brings it over to Dahlia and lets her do some strumming and

264
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she can't move anything but her shoulders and she's dancing with her shoulders and everybody's

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finding joy in her joy.

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And that's a gorgeous thing too, right?

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She's emanating joy, which means other people are feeling joyful and throwing that joy back

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at her.

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And so that was a beautiful virtuous circle.

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The other thing is making the decision to give Dahlia bat mitzvah, which is the Jewish

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rite of passage for a 13 year old or 12 year old.

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And that was a really, really tough decision because the premise is that you can chant

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this blessing and Dahlia couldn't speak.

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She couldn't walk, you know, and figuring out how to do that and really coming from

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a place of let's focus on what Dahlia can do rather than what she can't.

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And boy, learning that message was powerful and it's something that I use today, not just

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with kids, you know, but when we think about people we're encountering and understanding

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that there are things people can do and things they can't and what's going to be our starting

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point in that interaction.

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And I really, I appreciate that because music really can be a language when maybe people

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don't have the ability to speak verbally.

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So that sense of community and including her with the strumming of the guitar and you talk

283
00:20:15,120 --> 00:20:19,720
in your book about your mom playing the piano and people gathering around, right?

284
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And that sense of regardless of maybe what her abilities, Dahlia's abilities were, she

285
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was included no matter what.

286
00:20:28,480 --> 00:20:29,480
Oh yeah.

287
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In every space that she was in, in your faith, in family, in everything.

288
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So I appreciate you sharing that experience.

289
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I also wanted to ask questions about decision-making when it came to Dahlia's education.

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That is also very, I think very unique in her situation because she wasn't just an individual

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potentially with a developmental disability.

292
00:20:56,720 --> 00:21:01,280
She also had complex special healthcare needs, right?

293
00:21:01,280 --> 00:21:05,120
So there's a section in your book where you talk about the Kennedy Day School and you

294
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had some reservations and then ultimately you did.

295
00:21:09,440 --> 00:21:14,400
So can you tell more about what was that process like for being a parent of a child with special

296
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healthcare needs that were so complex?

297
00:21:16,720 --> 00:21:18,920
Yes, absolutely.

298
00:21:18,920 --> 00:21:24,680
So I call by the way, the Kennedy Day School, the best decision I never made because I rallied

299
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against it.

300
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I did not want Dahlia pulled out of the public schools.

301
00:21:28,980 --> 00:21:37,400
And it's such an interesting journey because so many people are on the opposite side trying

302
00:21:37,400 --> 00:21:42,280
to get their children out of the public schools and into a specialized school.

303
00:21:42,280 --> 00:21:43,840
And that was not our case.

304
00:21:43,840 --> 00:21:49,320
So when Dahlia's medical needs really became intense, that's when she had a tracheotomy

305
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and was ventilator dependent.

306
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And at the time she was in public school, she had a full-time aid.

307
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She had had an aid for a while because she had all of these kind of learning needs.

308
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And we started sending her to school with a private nurse who would take care of all

309
00:22:03,400 --> 00:22:05,060
of her medical needs.

310
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And so she had our private nurse that would go with her and she had a one-on-one aid provided

311
00:22:10,060 --> 00:22:11,600
by the school.

312
00:22:11,600 --> 00:22:16,520
And the school came to us and said, we need to explore other options for her.

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And they started off by the way of saying it in a very much like, we're just going to

314
00:22:19,720 --> 00:22:24,640
explore, we're just going to look into it, we're going to all be in this together.

315
00:22:24,640 --> 00:22:25,720
That wasn't really the case.

316
00:22:25,720 --> 00:22:28,400
The subtext was Dahlia can't stay in this school.

317
00:22:28,400 --> 00:22:33,160
Well, I wasn't having it because I wanted Dahlia to stay in the school where she knew

318
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people, where people knew her, where people celebrated her in our community.

319
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That was what I wanted.

320
00:22:40,200 --> 00:22:43,880
And they said, well, you need to go to look at these eight schools.

321
00:22:43,880 --> 00:22:46,200
And I went to them and it's all in the book.

322
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I won't go into the details, but I was devastated and horrified and just didn't see Dahlia in

323
00:22:52,120 --> 00:22:53,380
those schools.

324
00:22:53,380 --> 00:22:59,320
So we decided to fight the school system and that didn't go very well.

325
00:22:59,320 --> 00:23:04,840
Ultimately, what they ended up saying to us is, look, we got all the way to mediation.

326
00:23:04,840 --> 00:23:11,240
We didn't go to trial because what they said to us was, look, no judge is going to find

327
00:23:11,240 --> 00:23:17,000
a school that says, we do not believe we can keep your child safe and we're willing to

328
00:23:17,000 --> 00:23:22,720
pay huge amounts of money, the school system, to send her to a specialized school.

329
00:23:22,720 --> 00:23:26,200
No judge is going to say, no, you got to keep her, right?

330
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That's not going to happen.

331
00:23:27,600 --> 00:23:34,720
And so ultimately we realized we didn't have a choice and so reluctantly we moved her.

332
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And it is one of the things that I am so grateful that I didn't have a choice about because

333
00:23:40,840 --> 00:23:45,800
the Kennedy Day School was the perfect place for her, especially, you know, her disease

334
00:23:45,800 --> 00:23:47,360
continued to progress.

335
00:23:47,360 --> 00:23:56,120
The people there were so skilled and beautiful people who really, really talk about focusing

336
00:23:56,120 --> 00:23:59,060
on what a kid can do and not what they can't.

337
00:23:59,060 --> 00:24:01,600
And Dahlia was surrounded by other people who had varying needs.

338
00:24:01,600 --> 00:24:05,680
I mean, some like hers, some more intense, some less intense, but it didn't matter and

339
00:24:05,680 --> 00:24:08,720
the school was equipped to deal with all of it.

340
00:24:08,720 --> 00:24:11,960
And the school was equipped to figure out how these kids could do things that no way

341
00:24:11,960 --> 00:24:14,280
they could have done in a mainstream environment.

342
00:24:14,280 --> 00:24:17,040
It was such a perfect, beautiful place for her.

343
00:24:17,040 --> 00:24:21,200
And I'm so grateful to every single person associated with that school and who works

344
00:24:21,200 --> 00:24:26,840
at that school and so glad that people knew better than I did.

345
00:24:26,840 --> 00:24:31,480
I think that that's really, again, another really powerful part of this story because,

346
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you know, in part of our work as a parent training information center, we assist and

347
00:24:36,500 --> 00:24:40,960
provide resources to parents when they are having disputes with their school, just like

348
00:24:40,960 --> 00:24:41,960
you did.

349
00:24:41,960 --> 00:24:47,280
And, you know, we're giving parents what they can expect when they go into mediation.

350
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And then it is really hard when you get told, no, this is your only option.

351
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But to hear from a parent who based their only option, Dahlia went to it and you loved

352
00:24:59,160 --> 00:25:04,040
it and you're grateful for that experience, I think it's just a really refreshing perspective

353
00:25:04,040 --> 00:25:08,320
that we as Parent Training Information Center, we don't get to hear that very often.

354
00:25:08,320 --> 00:25:12,840
And I think it's really powerful for other parents to hear too.

355
00:25:12,840 --> 00:25:17,400
But at the end of the day, I'm really glad that the Kennedy Day School did work out and

356
00:25:17,400 --> 00:25:19,560
she did see benefit from that.

357
00:25:19,560 --> 00:25:20,760
Yes.

358
00:25:20,760 --> 00:25:26,200
I do also want to touch on another part of the book about Dahlia being involved in that

359
00:25:26,200 --> 00:25:37,640
drug trial and that her inclusion in that took a lot of creativity and persistence.

360
00:25:37,640 --> 00:25:45,160
What lessons did you learn from that about advocacy in the health care system?

361
00:25:45,160 --> 00:25:52,240
Yeah, you know, I fought and fought and fought to get Dahlia to find a clinical trial, then

362
00:25:52,240 --> 00:25:54,920
to get Dahlia into a clinical trial.

363
00:25:54,920 --> 00:25:57,600
I mean, this took years.

364
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And then finally she got accepted.

365
00:25:59,680 --> 00:26:02,320
And first of all, I completely had a fantasy in my mind.

366
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I mean, this was a clinical trial, trial being the operative word.

367
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And I was like, this is a cure.

368
00:26:07,120 --> 00:26:10,400
She's going to be clinical and la la la.

369
00:26:10,400 --> 00:26:11,400
And we were ready.

370
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I mean, it was taking place.

371
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We're outside of Boston.

372
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It was in D.C. and we were ready.

373
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We had the plane tickets.

374
00:26:15,760 --> 00:26:16,760
We had everything.

375
00:26:16,760 --> 00:26:18,680
We were going to go every month, the whole thing.

376
00:26:18,680 --> 00:26:22,520
And at the last minute, she was pulled from the study because she was deemed not healthy

377
00:26:22,520 --> 00:26:24,440
enough to participate.

378
00:26:24,440 --> 00:26:25,520
And so I learned a lot there.

379
00:26:25,520 --> 00:26:29,720
I learned that there are some things that no matter how we as parents, no matter how

380
00:26:29,720 --> 00:26:34,280
hard we try, how much we educate ourselves, how much research we do, there are some times

381
00:26:34,280 --> 00:26:36,480
when it's not going to go our way.

382
00:26:36,480 --> 00:26:38,440
I mean, I offered everything.

383
00:26:38,440 --> 00:26:39,440
I'll drive her.

384
00:26:39,440 --> 00:26:40,440
I'll do this.

385
00:26:40,440 --> 00:26:41,440
I'll do that.

386
00:26:41,440 --> 00:26:42,440
No.

387
00:26:42,440 --> 00:26:49,400
Ultimately, I don't want to give away too much, but ultimately, she did get into that

388
00:26:49,400 --> 00:26:53,680
same trial, moved to Boston and changed names, but it was the same drug.

389
00:26:53,680 --> 00:26:59,680
And near the end, we did get her into that trial.

390
00:26:59,680 --> 00:27:04,880
Mostly it was going to be something that would hopefully provide some information for other

391
00:27:04,880 --> 00:27:05,880
children.

392
00:27:05,880 --> 00:27:09,280
And Dahlia's disease was quite progressed by that point.

393
00:27:09,280 --> 00:27:13,120
But boy, I will tell you, in that case, it didn't work out.

394
00:27:13,120 --> 00:27:17,780
But advocacy, there is so much I learned and so much that did work out.

395
00:27:17,780 --> 00:27:21,440
And so I feel like every day was advocating for one thing or another.

396
00:27:21,440 --> 00:27:25,920
And I will just say, one of the beautiful things I learned, it happened twice where

397
00:27:25,920 --> 00:27:29,520
I advocated and advocated and advocated for something to happen.

398
00:27:29,520 --> 00:27:33,480
And then when it happened, it wasn't only for Dahlia, it ended up being able to be for

399
00:27:33,480 --> 00:27:35,280
a whole slew of children.

400
00:27:35,280 --> 00:27:38,840
And so that was really gratifying.

401
00:27:38,840 --> 00:27:44,480
That Dahlia's just even at the base level, just her existence supported so many other

402
00:27:44,480 --> 00:27:45,480
children.

403
00:27:45,480 --> 00:27:46,480
Yeah.

404
00:27:46,480 --> 00:27:51,000
And just not even just that, but your advocacy efforts and all of these things supported

405
00:27:51,000 --> 00:27:53,400
so many other children.

406
00:27:53,400 --> 00:27:56,680
So huge shout out to you as well.

407
00:27:56,680 --> 00:28:03,720
And your husband as a supporting actor.

408
00:28:03,720 --> 00:28:10,960
In the book, you also mentioned that Dahlia's mission was to embody joy and love, you know,

409
00:28:10,960 --> 00:28:14,040
kind of despite everything.

410
00:28:14,040 --> 00:28:19,960
How is that in her memory inspiring you and your family and her loved ones today?

411
00:28:19,960 --> 00:28:25,660
Oh, in every single way, because I think about that all the time.

412
00:28:25,660 --> 00:28:30,480
And I think about my goodness, this human being who had everything taken away from her

413
00:28:30,480 --> 00:28:36,200
and had every reason to be angry and to be bitter and to not want to even get out of

414
00:28:36,200 --> 00:28:37,280
bed.

415
00:28:37,280 --> 00:28:44,600
She just wanted to go out there and be her sweet, kind, joyous self.

416
00:28:44,600 --> 00:28:49,600
And if she could do that, then boy, I need to make sure that I'm doing that in her honor.

417
00:28:49,600 --> 00:28:56,160
And one of the ways is working with Mito Action to run a program called Dahlia's Wish where

418
00:28:56,160 --> 00:29:04,280
we send children and their families to give kids the world village and to Disney to have

419
00:29:04,280 --> 00:29:08,880
a week of joy and to have those memories and to create that for the whole family, not just

420
00:29:08,880 --> 00:29:12,440
for the child, but for the parents and the siblings too.

421
00:29:12,440 --> 00:29:22,360
Do your other children now have any words or anything that they want other siblings

422
00:29:22,360 --> 00:29:29,520
of children with special healthcare needs to know or how are they navigating this?

423
00:29:29,520 --> 00:29:34,120
It's hard and they're very different from each other.

424
00:29:34,120 --> 00:29:41,880
And I think they look at it as they mature through different sets of lenses.

425
00:29:41,880 --> 00:29:46,600
I think both of them feel she, they have used this word, so I'm not putting words in their

426
00:29:46,600 --> 00:29:47,600
mouth.

427
00:29:47,600 --> 00:29:50,880
I think both of them felt she was their biggest teacher.

428
00:29:50,880 --> 00:29:53,360
They felt she was their biggest cheerleader.

429
00:29:53,360 --> 00:29:59,880
They feel very much that she is their sister to this day.

430
00:29:59,880 --> 00:30:02,200
They were really, really, really tight.

431
00:30:02,200 --> 00:30:10,280
I as the mother feel like they are more empathic, more compassionate, more inclusive, kinder

432
00:30:10,280 --> 00:30:12,900
people than most of the people I encounter.

433
00:30:12,900 --> 00:30:16,760
Maybe that has to do with other things, but I think to a certain extent it has to do with

434
00:30:16,760 --> 00:30:21,400
having the good fortune to be Dahlia's siblings.

435
00:30:21,400 --> 00:30:25,360
That's very sweet of them.

436
00:30:25,360 --> 00:30:31,560
I also want to ask, and this is probably more a question for me, but I hope that it also

437
00:30:31,560 --> 00:30:35,280
helps some of our listeners.

438
00:30:35,280 --> 00:30:42,360
What advice do you offer to someone who, like me, isn't going through this situation themselves,

439
00:30:42,360 --> 00:30:50,640
but wants to offer love and support to a friend who's going through the most extreme kind

440
00:30:50,640 --> 00:30:53,200
of hardship like you did?

441
00:30:53,200 --> 00:30:54,200
You are.

442
00:30:54,200 --> 00:31:01,280
Again, I love that question because I think we're so uncomfortable around it so much of

443
00:31:01,280 --> 00:31:07,360
the time that we either don't really show up or we do something like, hey, let me know

444
00:31:07,360 --> 00:31:09,940
if there's anything I can do.

445
00:31:09,940 --> 00:31:12,560
When you say, let me know if there's anything I can do, what you're doing is you're putting

446
00:31:12,560 --> 00:31:18,880
the burden of figuring out what you can do on the person.

447
00:31:18,880 --> 00:31:23,560
Instead of saying, first of all, educating yourself.

448
00:31:23,560 --> 00:31:27,760
Educate yourself about whatever it is the child's diagnosis is.

449
00:31:27,760 --> 00:31:31,360
That goes a long way because the person doesn't want to describe it 100 million times a day.

450
00:31:31,360 --> 00:31:32,820
That's number one.

451
00:31:32,820 --> 00:31:38,280
Number two, and all of it depends on what your relationship is, but there is a huge,

452
00:31:38,280 --> 00:31:45,200
huge, huge value in getting over your own discomfort and sitting with the person in

453
00:31:45,200 --> 00:31:50,960
their sadness or in their whatever emotion they're going through.

454
00:31:50,960 --> 00:31:52,520
Being with them.

455
00:31:52,520 --> 00:31:55,680
Your presence means so much.

456
00:31:55,680 --> 00:31:58,820
Now, they may have really practical needs too.

457
00:31:58,820 --> 00:32:02,800
They may need, for example, somebody who's going to take the other kids out to ice cream

458
00:32:02,800 --> 00:32:03,800
because guess what?

459
00:32:03,800 --> 00:32:07,880
They can't do that right now because they're focused on the other kid.

460
00:32:07,880 --> 00:32:11,600
So maybe it's paying a special attention to the siblings.

461
00:32:11,600 --> 00:32:17,080
Maybe it's making a menu of things and saying, here, friend, I thought of like 10 things

462
00:32:17,080 --> 00:32:18,880
that might be useful.

463
00:32:18,880 --> 00:32:23,560
Just check off if there's anything here, you know, taking your kids out to ice cream, taking

464
00:32:23,560 --> 00:32:27,680
your dog for a walk, mowing your lawn, taking you out to coffee, you know, whatever the

465
00:32:27,680 --> 00:32:34,480
thing is, but just coming up with some ideas and giving those ideas to the friend.

466
00:32:34,480 --> 00:32:35,600
I could go on and on.

467
00:32:35,600 --> 00:32:36,880
I have articles about this.

468
00:32:36,880 --> 00:32:37,880
I should go to my website.

469
00:32:37,880 --> 00:32:38,880
I've got articles.

470
00:32:38,880 --> 00:32:43,080
I've got the whole thing because I'm so passionate about this topic.

471
00:32:43,080 --> 00:32:44,840
And mostly it's because, you know, I had no clue.

472
00:32:44,840 --> 00:32:48,960
I didn't know what to do or what to say, not only when people are suffering, but, you know,

473
00:32:48,960 --> 00:32:50,720
through grief, through loss, through sickness.

474
00:32:50,720 --> 00:32:51,720
I had no idea.

475
00:32:51,720 --> 00:32:55,460
And I think that as a society, we have a lot to learn.

476
00:32:55,460 --> 00:32:59,200
And sometimes we just only learn because we've went through it like I did.

477
00:32:59,200 --> 00:33:02,720
And so then I want to share it with other people.

478
00:33:02,720 --> 00:33:03,720
I thank you.

479
00:33:03,720 --> 00:33:04,720
I appreciate that.

480
00:33:04,720 --> 00:33:10,280
I love the idea of creating a menu and giving it to someone and saying, you know, just check

481
00:33:10,280 --> 00:33:16,440
off three, five things from this that I can do to help you because people just really,

482
00:33:16,440 --> 00:33:21,760
people want to support and oftentimes will say well-meaning things that just aren't the

483
00:33:21,760 --> 00:33:24,720
right thing at the right time.

484
00:33:24,720 --> 00:33:30,320
And just hearing these concrete examples of what someone like I could do to help support

485
00:33:30,320 --> 00:33:33,720
someone is going to be really, really meaningful.

486
00:33:33,720 --> 00:33:38,040
And I think another thing people can do if they want to know more is to read this beautiful

487
00:33:38,040 --> 00:33:44,640
book, Breast-Taking, in honor of your sweet daughter and your other children.

488
00:33:44,640 --> 00:33:50,240
And I just want to say that I loved this book.

489
00:33:50,240 --> 00:33:54,000
And there were times where it really was a really hard read.

490
00:33:54,000 --> 00:34:01,920
And it's just the beauty, it turns into these beautiful moving moments.

491
00:34:01,920 --> 00:34:04,560
And I just want to say thank you.

492
00:34:04,560 --> 00:34:11,320
Thank you for sharing that with us because it had to have been beyond the pale of impossible

493
00:34:11,320 --> 00:34:16,400
to live it and then have your other children and then you're working and your husband's

494
00:34:16,400 --> 00:34:18,780
working and you're writing this book.

495
00:34:18,780 --> 00:34:26,400
But yet you still took Dahlia's joy and her experience to give you the fuel for the fire

496
00:34:26,400 --> 00:34:28,480
to share it with the world.

497
00:34:28,480 --> 00:34:33,520
So I mean, I'm just beyond grateful that I got the opportunity to read this book and

498
00:34:33,520 --> 00:34:37,240
we are going to share a link to the book in the description.

499
00:34:37,240 --> 00:34:41,100
We'll obviously very much share your website.

500
00:34:41,100 --> 00:34:47,960
And I just want to say a huge thank you for your time and taking this just heart wrenching

501
00:34:47,960 --> 00:34:54,280
experience and turning it into something that we can all benefit from.

502
00:34:54,280 --> 00:34:55,560
Thank you so much.

503
00:34:55,560 --> 00:34:59,880
And I will say because I know a lot of your listeners are going through challenges and

504
00:34:59,880 --> 00:35:05,680
if people want to read this book as part of their book club, I'm happy to come in and

505
00:35:05,680 --> 00:35:08,800
I mean, I know you're far away, but listeners presumably are everywhere, whether that's

506
00:35:08,800 --> 00:35:15,400
zooming in or if it's local to me by any chance to be part of conversations.

507
00:35:15,400 --> 00:35:20,520
Because if people are interested in having these conversations and reading the book together,

508
00:35:20,520 --> 00:35:25,720
I'm finding that the book club conversations are something people are getting a lot out

509
00:35:25,720 --> 00:35:26,720
of.

510
00:35:26,720 --> 00:35:27,720
So I just wanted to put that out there.

511
00:35:27,720 --> 00:35:28,960
Yeah, absolutely.

512
00:35:28,960 --> 00:35:33,040
I think I know of actually quite a few people who would be wanting to take advantage of

513
00:35:33,040 --> 00:35:38,240
it who are avid readers, much like yourself, because books and quotes kind of and letters

514
00:35:38,240 --> 00:35:41,280
that family members have written are also very much a theme.

515
00:35:41,280 --> 00:35:46,320
But I am out here giving away the whole book, so I will try to rein in it.

516
00:35:46,320 --> 00:35:50,600
Thank you so much, breathtaking, absolutely a beautiful book.

517
00:35:50,600 --> 00:35:51,960
I hope everyone reads it.

518
00:35:51,960 --> 00:35:54,560
Jessica, thank you so much for your time.

519
00:35:54,560 --> 00:36:03,200
Thank you so much.

520
00:36:03,200 --> 00:36:08,100
Thank you so much, everyone out there for listening in and know that if you are in Idaho

521
00:36:08,100 --> 00:36:15,940
or planning on moving to Idaho and have questions on systems or services for children with disabilities,

522
00:36:15,940 --> 00:36:20,080
please consider reaching out to us on our website at iPull Idaho.

523
00:36:20,080 --> 00:36:30,120
That's I-P-U-L Idaho.org or by calling us at 208-342-5884.

524
00:36:30,120 --> 00:36:32,160
Be sure to tune in next time.

525
00:36:32,160 --> 00:36:35,160
Until then, this has been Unlimited Parenting.

526
00:36:35,160 --> 00:36:36,160
Thanks for listening.

527
00:36:36,160 --> 00:36:47,160
I'm there.