(gentle music) - Will you consider this?

We all have our hurdles, we all have our challenges, we all have our difficulties.

But when it's the kids who are facing some of those challenges, oh, that's not so nice.

I have two wonderful people here.

Moms of kids with medical complexities, but you're dealing with it.

- Yes.

- We have Shelby Vincent, and we have Jeni Bassi.

Now, Shelby has written a wonderful book.

It's called "Perfect Through and Through."

And this book tells you about the kids and their challenges.

It's the perfect book to explain to a child that it's okay, God made you the way He made you.

So Jeni, tell me about you and where you came from.

First, let's get a little background on you.

- Yeah.

So my name's Shelby.

I was born and raised in Bloomington, Illinois.

And yeah, I have my husband and my three kids.

Nolan is eight, Naomi is six, and then Penelope is three, so.

- Okay.

All right.

And then Jeni, how about you?

You grew up over there too or?

- I'm originally from Clinton and then I moved, yeah, to Bloomington in my early 20's and married my husband Matt.

And then we have our son August, who is eight.

- Okay, well, we'll hear more about August in a minute, but, so first, Shelby, tell me about your inspiration for "Perfect Through and Through."

- Yes, so my daughter was born with a really rare tumor called a sacrococcygeal teratoma.

- Oh wow.

- It is, yeah.

It's not easy.

- Can she pronounce that?

No.

- No.

And even sometimes I have to write it out to get the correct spelling 'cause it's so long, but the abbreviation is SCT and it's a rare tumor.

It forms at the base of spine.

And hers was both internal, mainly external.

It was about the size of a head.

And so, going into delivery when I was pregnant with her, I had no idea that she had this large tumor.

- Wow!

- We did about eight sonograms my whole pregnancy and nothing showed up on it.

- Oh my gosh.

- Yep, so one also the week before I delivered.

So going into delivery, I just expected just a normal delivery.

- Like the other two.

- Yes.

And when she was born, in the middle of pushing, the bedside nurse to the left of me said, "What is that?

I've never seen this before."

And they immediately called in for help.

And she was born with this tumor, size of a head, external.

- Oh my gosh.

- Yes.

So she was taken right away to the children's hospital and had surgery at five days old.

And we went through lots of CT scans, MRIs, blood work in the first couple months.

And at six months she had a recurrence.

- Oh gosh.

- So we had another recurrence surgery and thank God, she's six years old now.

She is officially- - Cancer free.

- Five years cancer free.

Yep.

- So how rare is that?

Or, or how often does that (Christine muttering).

- Yeah, yeah, yeah.

- The tumor occur.

Yeah.

- Sacrococcygeal teratoma.

It is about one in like 50,000 live births, so it is very rare.

- So did you have some genetic testing afterwards to find out if?

- Yeah, nothing, they don't know what caused it.

- Gosh, that's crazy.

- Yeah.

- Really crazy.

- Yes.

- But she's okay now.

- She is.

She is.

- And basically, so cancer free.

- She is cancer free.

- Okay.

- Yes, we're very thankful for that.

- Good.

- And then your little guy, Jeni, he was born with congenital heart.

- Yes.

- Tell me about that.

- Yes, so same thing as Shelby.

He was undiagnosed while I was pregnant, so I had a healthy pregnancy and when he came out he couldn't keep his temperature up and the nurse, you know, heard a murmur.

So he was taken to the NICU for, you know, several days there.

And then we actually, you know, were transferred to a children's hospital as well where he, you know, was kind of watched and diagnosed with a few more, you know, congenital heart disease.

And then we ended up at Lurie's Children in Chicago when he was around eight weeks old.

And at that point he was in heart failure, so they admitted him, but his heart wasn't strong enough at the time to go through surgery.

So we had to kind of, you know, play the waiting game, go through echoes, you know, try some different medications.

- Agonizing.

- Yeah.

Oh yes.

- Yeah.

- And during that time he unfortunately got really sick with a sepsis infection and had to be intubated from that.

And so we had to get through that infection before he could make it through surgery.

But because he did pull, you know, pull through that sepsis infection, they were able to go ahead and do surgery at 12 weeks old.

And yeah, he came out and, you know, has just thrived since.

He will have, he has a stent in his heart.

And then, so he'll have to continue to go through cath procedures as he grows to enlarge that, to keep up with the blood flow for his body.

But yeah, I mean, he is great.

He is a happy, healthy, you know, eight year boy.

Yeah.

- So- - What all 8-year-olds do.

- You're learning a lot more about medical conditions, both of you than you ever wanted to know about the medical field.

- Yeah.

- Yeah.

Yep.

- Okay, so Shelby, so tell me, what is your inspiration then for writing this book, "Perfect Through and through?"

- Yes.

So my daughter is, thank God, cancer free, but when we started potty training her around two, we just realized that she had no control over her bowel and bladder function.

- Oh, okay.

- And so we did a bunch of testing and she was diagnosed with something called neurogenic bowel and bladder.

So her nerves had been damaged from either the first initial resection surgery.

- Right.

- Or just in general, the way that she was formed.

- Okay.

- And so when she was four, we were driving in the car, we started enemas and catheters, because she was having routine UTIs back to back.

One led to a week hospital stay because she became resistant to all oral antibiotics.

- Oh gosh.

- So she had to do IV antibiotics and at that point we said we have to do something to keep her kidneys healthy.

So we decided to do these catheters and enemas.

And when we were, when she was four, she was driving in the car with me and just said, "Mommy, when am I gonna be normal like everyone else?"

And in that moment, I was so focused on the past four years making sure that she was cancer free, I never had anything in my mind other than that.

And so- - That was normal for you.

- Correct.

- You put it in that normal box.

- Yes, exactly.

- But that wasn't for her.

- No, 'cause everyone goes things through different, and your normal is different than my normal.

And so I wanted it to be my mission to redefine what normal means and to make sure that she knew that every single one of us is perfect exactly as we are, regardless of what you're going through.

- [Christine] Because God made us that way.

- Exactly.

- So do we have that drawing?

Did you?

- Yes.

- Where did we put those drawings?

- Yeah.

- Okay.

Right over here.

- We have all them.

- Let's not knock this water over because there she is.

(all laughing) This is Penelope.

- This is Naomi.

- Okay.

- And then August.

- Oh, mean Naomi.

Okay.

- Yeah.

My other one.

- Yeah, okay.

All right, so yeah, hold it up a little bit like that.

Yes.

- Yes.

- So she has to have a catheter all the time.

- Yeah, she, well, she does enemas once a day.

So that's what this drawing is.

In the book, there is another little girl who does catheters as well.

So the book actually features 28 real kids walking through various medical challenges.

So, Naomi's character is this one here.

And then August's character.

- [Christine] You wanna hold it up a little bit, Jeni.

- Yep.

- There you go.

Yeah.

- August's character is right there.

So I, it was so important to me that kids feel represented and seen for exactly as they are and to just raise awareness for what they're going through.

So we had characters made after them.

- Love it.

Who was the illustrator?

- She is Tanya, and I don't know where she came from.

It was a package that I did with the publisher.

- Okay.

- Dreamspark Press.

They actually found the illustrator for me.

- Oh.

- And so, the parents submitted three to four pictures of their kids and the illustrator created these- - Just picked them up.

- Amazing illustrations.

- Right.

- Based off of their pictures.

- So now you found these, you you can put 'em down.

- Yeah.

- At ease.

- [Shelby] Yeah.

(Shelby laughs) - So you found 27 other families.

- Yes.

- Where did you find them and how, do you have a support group or something or?

- No, so when she asked me that question in the car, I thought that if she was going through this, there had to be other kids walking through the same questions.

And so I started writing down different medical challenges.

Like, in my neighborhood, my next door neighbor's child has severe asthma and allergies.

And then I was thinking about Jeni, who's a friend whose child had a heart procedure.

And I was thinking about my son's, one of his best friend in school is visually impaired and uses a cane.

So I started, in my notes section, writing down on your phone the most essential in my notes, writing down different medical challenges that I personally knew, and then other kids that I didn't personally know, like kids who walking through Down Syndrome and all.

I wrote a list of 18 various ones.

And then I posted what the kids that I didn't know on social media, and within 24 hours I had every single kid accounted for.

- So are they all local then?

They're all central Illinois or where did you find some of the others?

- No, so it was friends of friends or friends of family, you know, and they're, let me try to think of the states.

North Dakota, South Dakota, Minnesota, Illinois, Indiana, South Carolina.

Hopefully I'm not missing any in that.

- Jeni, come on.

Do you remember?

- Yeah, I know.

- Help her out.

- I'm trying to think.

- Phone in front.

- Yeah.

Yeah.

- Okay.

- But yeah, 28 kids from across the US, various states, which is so cool.

- How special that is.

And the best thing about it is that we can learn from it, but it's so very simple.

So here is Naomi.

- Yep.

- So, and you saw, you saw the picture already.

So, God made us all different.

It's easy to see some kids use enemas to poop, while others need catheters to pee.

Just simple messages.

And then when they're seeing it, they're okay with it.

- Yeah.

- All right, well.

So now, you also found that the kids who are pictured in here that you have these posters made up.

- Yeah.

- That they went through the book and then they got to see themselves.

- Yes.

- And you sent me a video of it.

How rewarding.

Tell me about your experience with August first when he spotted himself.

He likes to fish.

- Oh yeah.

He loves to fish.

And our dog is also on the poster with him.

So he was super excited to have Richard included in that as well.

- I mean- - Richard has three legs.

- Yeah.

And Richard has three legs.

- So cute.

- So yeah, it makes him unique too.

Really, it just boosted his confidence so much.

And even now, I, you know, we came across one of the copies at his physical therapy office and he took it up to the counter and he's like, "I'm a character in this."

He is like, "I can sign it for you."

And I was like- - Just in case.

- You know, Yeah - You don't need to ask.

- And they gave him the pen and they signed it.

You know, he signed it.

But I can just like, yeah, I can see how much more confident he is to see the other kids also have, you know, differences.

And I don't know, I mean, I really think that because of the book and you know, to see himself as a character, he really has just like opened up about it.

Loves to share about it.

And I think that that's so special too, because- - It really is.

- Yeah.

- Like, you know, she was saying at first, you know, August, you know, why do I have a scar?

Why do other people not?

You know, why is my heart, you know, different?

And just a lot of questions which we'll still walk through with him, but.

- [Christine] So, how do you explain that to him?

- You know, just basically, you know that he was born this way and everybody has something, you know, we can't always, you know, see it physically, but just because it's not there physically doesn't mean that, you know.

- It doesn't exist.

- Yeah, exactly.

And everybody is walking through something that we don't know.

- Right.

- You know, and like I said, I just think that this has really boosted his confidence and I love that.

- Awesome.

- I have a quote that says, "Not all disabilities are visible."

And I love that, because if you look at my daughter, you have absolutely no idea that she's walked through anything.

Even some of my, like aunts and uncles have no idea that we do daily enemas and catheters on her.

And so, it was so important to me that these kids feel proud because I believe God made us all for a reason and we all have a purpose.

And so we all do things differently and it's just to educate people about our differences and to help make these kids feel proud to be represented and seen, so.

- Yeah.

Well, so how did, how does she, when she identified herself, and I mean she knew you were writing the book, right?

- Yeah, yes.

- Okay, she feels pretty- - She loves it.

- Pretty important.

- Yep.

And the front cover is my son and my other daughter Penelope, and my son Nolan.

- Yeah.

- And they love it too, 'cause they're like, "We're on the cover of a book."

So, it's been a really fun family project for all of us.

- Right.

- And Naomi just loves it.

- Did the other kids weigh in, how?

Because she gets a lot of extra attention, obviously.

And did they weigh in on contributing to this book?

I mean, did they say- - Yes.

- "Hey mom, don't forget."

- I had my son Nolan loves to give his opinion, which I love.

He's eight years old and you know, he has a strong opinion now.

And so, he actually came up with the cover of the book.

I showed him some drawings and he chose this.

So that was really cool.

- I love it.

- Yeah.

- Well then in the back of the book you also have, you kind of have a description of each of the pages.

So like, explain that.

- Yeah.

So the book, like you had mentioned previously, it's very simple and that was the whole point, is that I want it to kind of be an open conversation for parents to have with their kids.

And so the book kind of gives a key, if you would, for going back to every page if you want to have more conversations or to be able to answer questions.

- [Christine] With those children or the children who have those same disabilities.

- Yeah.

It's just about the disabilities.

And then if you go to my website, perfectthroughandthrough.com, that actually has each kid a description about like, what they've gone through medically or a little bit more about their journey is featured on the website, but, yeah.

- [Christine] So what is that website?

- Perfectthroughandthrough.com.

- [Christine] All right, and then we can find you on Facebook.

- Yeah.

- I mean, so you've done a whole lot of networking here.

- Yeah.

- Networking with your, with your little stars.

- Oh yeah.

- And then also just letting people know what you've got to offer.

- Yeah.

I think it's a book that's so important to be everywhere, just to raise awareness about kids walking through medical challenges.

And I think we have the opportunity to mold the next generation.

And it starts by reading to your kids and having these conversations.

- And awareness.

- Yeah.

- Yeah, exactly.

And empathy.

- Yeah.

- So this will teach empathy to kids.

Now do you have this in a lot of pediatrician's offices or?

- I'm just starting that.

So I've just published- - That's your next wish.

- In July.

Yes.

- Okay.

- In pediatricians, churches, schools.

I would love to get it into just to kind of get the word out wherever I can.

- Right.

And then how are you helping her with this?

I mean, you were, you were cool with her with coming forward and saying, yeah, you know, this is the truth.

This is no bones about it.

August has this heart condition, and it's life.

It's your normal.

- Yeah.

Yeah.

August, first of all, he is a super outgoing kid, so, you know, everywhere he's going that has books, he is marching up to them and being like, do you have "Perfect Through and Through?"

Exactly.

So I love that.

You know, or, you know, he wants, you know, he wants to donate to the library at his school, you know, the books and stuff like that.

I, like I said, I just love his confidence and how outgoing he is.

And I'm sure that whoever he can tell, you know, about this book he's going to.

- [Shelby] And he just gave it to his cardiologist, right?

- Yeah.

Yeah.

- The other day.

- Oh yeah.

We see his cardiologist every six months.

So we hadn't seen him since this came out.

So yeah, we got to take it, you know, copy up to him and he signed it and it was such a special moment.

It really was.

You know?

- I bet it was.

I bet the cardiologist was just touched.

- Oh yeah.

Just so excited.

And it's also, it is in the gift shop at that hospital too, so.

- Yep, I'm trying to spread it to hospitals 'cause I think it's such a important book.

- Especially children's hospitals.

Yeah, so tell me about that.

Well, now, you have appeared, we're late in the game here, we've had a couple of delays trying to get you here.

- Yes.

- But you have been on national news and everything because of this.

Tell me about all those adventures.

- It's been really fun.

Nerve wracking.

But it's been awesome to just spread awareness.

I feel like God gave me the purpose after, you know, I had walked through all of these situations with my daughter up to her asking that question every single doctor's office before I would go in, I would say the same prayer.

And it was always, this is so hard, I don't understand why we're walking through this.

Or I'm like, feeling so overwhelmed, there's so many decisions.

And I would say, but can you show me how I can be used for the greater good?

Like, give me a purpose out of this.

Make it clear.

- And you got that when, when she mentioned that.

- When she asked me that question, I like instantly knew that this was something that I was supposed to do.

And so, I've kind of kept that in my mind, constantly reminding myself that like, even if I'm getting nervous, I know this is what I'm supposed to be doing and spreading the awareness.

- Right.

- So, it's not about me, it's about these kids.

- Well, also in here it did say, like, the one doctor said to you, "Okay, hey Shelby, quit trying to make this normal."

- Yeah.

- "You're making you normal," or something.

What was that quote?

- Yeah, yeah.

He had said at her urology appointment, he looked at me and he said, "Your daughter's never gonna be normal, stop like, trying to fight it."

- [Christine] And was she there?

What did she hear?

- Yeah, she was drawing during it.

- Oh, but she still heard it.

- Yeah, she definitely heard it.

And I know what he meant by that because he was kind of telling me like, "We need intervention.

She's having these constant UTIs, like, stop trying to do everything possible to delay."

- Normalize that situation.

- Correct.

- Yeah.

- So yeah, not great timing with her being there, but it was not.

- It was not good bedside manner I would have to say.

- Yeah.

But it's okay, you know.

Now we're, yeah.

- Here you are.

- Yeah, here we are.

(all laughing) - So, you're trying to get the word out, trying to get it everywhere, and really this could go into Children's Hospital in every children's hospital in the country.

Have you had people reach out to you who have seen your other interviews elsewhere to get them in the hospitals?

- Yeah, I have.

I think it's in three hospitals currently, but I'm trying to make it more on a national level.

So that will be my 2026 goal.

- Okay, well there you go.

I like that.

I like that.

And so, future, are you gonna write any other books?

I mean, have you been getting any messages?

- I've been having so many people reach out with different medical challenges that I haven't featured in the book.

So I actually have in my notes section more that I have not discussed and like, contact information for people who have reached out.

I don't have any specific plans, but I'm not saying it's not going to happen, so we shall see.

- Well, you know, you have other things you have to get through.

- Yes.

- You have to prioritize everything.

- Yeah.

- And then, so what is Naomi's outlook?

I mean, she's always going to have to be catheterized at this point.

- Correct.

- We don't know what medicine will do in the future.

- Yeah.

We have no idea where, or if, I mean, the likelihood of her nerves repairing herself is pretty slim at this point, but you never know, so.

- Do we think that the nerves have been severed?

- Mm-hmm.

- Okay.

- Yeah.

- But we don't know if they can be somehow reconnected.

- Yeah.

We don't know.

So right now the plan is to move forward with enemas and catheters, but that might change here in a couple years too, if we do a procedure.

So we'll see.

- All right.

- Yeah.

- And then, so what do you think of all of her efforts?

- I mean, yeah, no, it's, it really is.

She's done such a great job.

I mean, she's really like, put this, you know, number, not number one.

Obviously her kids are number one, but I feel like, yeah, I mean she just has gone and she's gone out of her comfort zone.

I feel like, you know, she's really put herself out there and I think that that's so, I mean, I'm proud of you.

- Thank you.

- You know, and I'm also, I, like I said, I'm just so proud, you know, that August gets to be in this too.

It's just, it's really, it's neat to see and cool to see how far it has, you know, stretched and gone.

- And I've heard so many cool stories, like people reaching out saying how they've been impacted by the book.

I had a girl in her 60's or 70's come up to me and say she's suffered with incontinence her entire life.

The only people who know about it is her husband and her mom.

She's been so ashamed and just like doesn't wanna talk about it.

And she said she's so thankful that books like this are being written to be able to change the stigma.

- Right.

- So, I think it's so important not just for kids, but for adults too, to be able to have these open honest conversations, yeah.

- I mean, how do you stop from tearing up when you hear stories?

- You don't.

- Like, I have cried so much.

- Because it just touches people differently.

And I hope we can create a community where people are just proud to be who they are regardless of what medical challenges they might be facing.

- Exactly.

And you're right.

You can't judge a book by its cover.

And this sort of helps you understand that you can't, well, you can and you can't with this book.

- Yeah.

- But this is a rare book.

- Yeah.

- This is very rare.

Yeah.

Okay, so what does Naomi wanna do when she grows up?

- I don't know yet.

- Okay.

- Every single day it changes.

- Well that's because- - The other day she wanted to do hair, be in beauty school.

- Okay.

- So, I have no idea.

Some days it's a teacher every day it changes, but.

- [Christine] You know, and her favorite movies change too, I'm sure.

- Oh, constantly.

Yes.

- How about August?

What does he wanna be when he grows up?

- He wants to be a pilot.

He is very adamant.

He's been stuck on airplanes since he was like three years old.

And he has, you know, he says he wants to be a pilot, so we hope.

- Yeah.

Yeah.

And then, what do their friends, so their friends know about their medical challenges, and how do they handle it?

They're cool 'cause that, that's just how they've always been, right?

- Yeah, I know a lot of Naomi's friends' parents have bought the book and are reading it to their children.

So I'm hoping it'll create change.

I want her to be able to carry a catheter around school and no one asks anything different.

- Don't think nothing of it.

Yeah.

- Right.

- Yeah, just know that that's something that she needs to keep her body healthy.

So, that's a whole purpose of this.

But yeah, I think that they're supportive and they love it.

- It's just, it's just really awesome.

- Thank you.

- What a beautiful gift for the kids themselves and then for their parents and like you said, other people who've picked it up.

Yeah.

Well that's great.

Alright, so remind me again of where people can find you and find the book.

- Yes.

So perfectthroughandthrough.com is the website.

It just tells you a little bit more about each child's journey.

- All lowercase.

- Yes.

- All right.

- And then you can also purchase it on Amazon or Barnes and Noble.

- Okay.

Awesome.

Now, what else do you have to add?

Anything else that we absolutely need to know?

- Anything else?

So yeah, I need to know.

- Did we get everything on your notes?

I see you brought some notes.

- I think so.

Well, I was just, I brought stats, but we don't have to go over those.

But I was just talking about like, I've done a couple presentations now and I've asked, I start them by saying like, who in here knows a child who's walking through a different medical challenge?

- And what are those stats?

- And almost every single person has raised their hand.

So it's not uncommon.

- Right.

- I think a lot of times parents just don't know how to start the conversations.

- Right.

- And so I'm hoping that this gives people the opportunity to talk.

- This is your jumping in point.

Well thanks so much ladies for coming over here.

- Thank you.

- And we will wait to see if you do "Perfect Through and Through" second generation.

(all laughing) All right, thanks so much.

- Thank you.

- Thanks for joining us.

And make sure that you find a copy of this to read because it really is very inspirational.

- Thank you.

- Thanks again for being here.

- Thank you.

- Thank you for joining us.

Until next time, be well.

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