Love Needs No Words

Hosted by Erica Jolene with special guest Jenny Park | Transcription HERE




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Love needs no words.

Somehow those four words have perfectly captured one of the best lessons our children have taught us. I am excited to share this glimpse into the life of my fellow #MMPSI medical mama, Jenny.


Jenny has a magical way of putting words to the indescribable essence of our children.


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Episode Transcription


Erica

Welcome to Atypical Truth. This is a podcast community for those impacted by disabilities and complex medical conditions. I am your host, Erica Jolene.


In this special episode, I chat with my fellow medical mom and friend, Jenny Park. Jenny is the proud mom of two beautiful children, Noah and Josie. As an infant, Josie was diagnosed with a rare genetic mutation and this has resulted in her experiencing a severe form of drug-resistant epilepsy, in addition to a rare and difficult-to-treat form of pulmonary collateral bleeds. Of course, there's a whole range of complications that come with this kind of genetic mutation and Jenny does an amazing job at sharing with us a little bit about those, but also how it has impacted her life and the life of her family.


I have come to know Jenny through this amazing support group that I found on Facebook, whose members are all fellow parents and caregivers of children with malignant migrating epilepsy, which is very often drug-resistant. These bonds, these friendships, they are some of the strongest support systems that many of us medical parents have to lean on throughout our journey. I think that has something to do with the fact that these other medical parents, they implicitly understand all the nuances of this complicated life, and yet, so many of us have never even had the chance to hear one another's voice in real life, let alone meet in person. Instead, we've held onto each other's words, the shared family photos, the brief videos - ranging from helping each other to confirm a strange medical development or watching our children play with a toy and their new and highly anticipated adaptive equipment. We've supported each other through the comments boxes on Facebook, but we've yet to really have a real-life conversation. So to have this real-life conversation or as real as you can get through zoom conversation with my friend Jenny, it was an absolute dream come true. And truth be told, we talked for damn near three hours. It really got me thinking like, why aren't we doing this more often? And, well, it boils down to time. We don't have that kind of time very often.

Honestly, though, I think we could have talked all day, but for your sake, I've drastically edited the content down.


In next week's episode, I'll be releasing some of the outtakes from this conversation, discussions that range from career changes and anticipatory grief. And now, in honor of Mother's Day, I am elated to introduce to you the very sweet and kind-hearted Jenny Park, who was not only brave enough to be one of my first ever podcast guests but also brave enough to get on here and be vulnerable with some pretty heavy stuff. In this episode, she shares with us a glimpse into her life with our friend Josie as not only a mother, but also an educator. I hope you all enjoy!


Erica

Here we go. We're gonna do this. Do you feel better? Do you feel less nervous?

Jenny

I hope? Yes.

Erica

Good. (laughter from both) I've got this cat on the bed....

Jenny

Soooo cute! So cute.

Erica

So I love to ask people these questions that were inspired by Bernie Brown. I'm not sure if you're familiar with her. I love her. So what I'm about to ask you is inspired by that to just kind of give our listeners a little bit more of an insider knowledge on you.

Jenny

Okay!

Erica

What is your favorite smell?

Jenny

Oh my gosh, that is a super hard question. Okay, this may sound weird, but I love that fresh out of the bath, clean hair, lotioned...I love that smell. That's truly one of my favorite smells.

Erica

I do too. I like the before and the after. There's something built into those smells. It's just all love you know (giggles)

Jenny

Their own scent. They carry their own scent and I think our kids...I'm sure you know this they're almost like babies. You know, like, I know know a smell but our babies I don't know they smell so good to me.

Erica

UmmHmmm. They do!

Jenny

I love Josie's own little smells.

Erica

I tell Caratacus, he gets so sleep sweaty, and I'm like, "ahhhh, I know this is so gross. But I love it! I love to smell it."

Jenny

That's Noah's! It’s his favorite smell.

Erica

I love it!

Jenny

But he likes them before the bath. He said, "When her hands are dirty, that's when they smell good." And my husband and I, I have to laugh, we say that Josie has puppy breath. Like she has that good smelling breath. I love it!

Erica

That's awesome. That's such a good description too.

Jenny

(laughing) It is!

Erica

What did you want to be when you grew up?

Jenny

I wanted to be a teacher. It's sort of funny. I have no idea when it started, how it started, but I have vague memories of being like three and four, hanging out with the neighborhood kids and forcing them to play school with me. And of course, I'm the teacher, I'm bossing them around. And then once I actually went to elementary school, I had such amazing teachers that just totally instilled that in me. I've never wanted to be anything else besides a teacher.

Erica

That's awesome. I used to do the same thing to my stuffed animals and line them up and I just teach them fake math.

Jenny

At least you did it to stuffed animals. I did it to the neighborhood kids. Like we're gonna play school first so we can play what you want to play. (both laughing)

Erica

Love it. I was the only girl in my neighborhood. So I don't think that would have gone over well. You know? (laughter from both) Tell me something silly or interesting that most people do not know about you.

Jenny

I think people that know me well know this. I am obsessed with coffee. That is my one vice. That is my one thing that can make my day better. It doesn't matter the time of day. And I'm very particular about how I like my coffee. I'm not hardcore enough to like black coffee.

Erica

Oh...Do tell. Do tell.

Jenny

To be honest, it's an inch of vanilla creamer in it. That's how I have it in the morning. But I love iced coffee. I mean, that is just, that's my happy right there. That's my vice in life that I need to get by

Erica

How many cups of coffee do you have a day?

Jenny

I'm pretty good. I have to say I found my no-go region have too much coffee in college. You know, the heart palpitations and the sweating. Now I know I have one cup while I get ready and then usually like an iced coffee or something in the afternoon. So about two.

Erica

Yes (laughing) Yeah. I remember working, I loved my cup of coffee in the morning. Of course by cup, I mean very large.

Jenny

Yep. My mugs are very big.

Erica

I agree. The creamer, for me, is necessary. It wasn't always that way. In fact, I used to put a little scoop of vanilla ice cream in it, because it gives it a frothy topping.

Jenny

I do that with whipped cream sometimes. A little scoop of whipped cream on top the way it melts.

Erica

Try with ice cream sometime. I will. You might really enjoy it. It still gives it that vanilla flavor. Yeah. And then at about two o'clock hits. And I'm like, I need that other cup stat!

Jenny

I need caffeine. Yes, I'm the same.

Erica

So Jenny, what is one thing that you are presently grateful for?

Jenny

I think the COVID pandemic has definitely made me thankful for my family. Jordan, Noah, and Josie, they are everything to me and our health. We've managed to escape getting COVID and just the fact that we're healthy, we're together. I mean, that really means everything to me.

Erica

That has been a common theme for this question.

Jenny

I bet.

Erica

And you know, that's one thing that this has taught us. I think it's taught us to be grateful for the days that were healthy and that we're here. So...

Jenny

For sure.

Erica

What comes to mind, when I ask you to recall a memory or a moment that brings you great joy.

Jenny

I have several that come to mind. One would be graduating college. That was huge for me. That felt like it was never going to end, six and a half years of my life was so difficult. So graduating college was huge, as well as having both my kids. I mean, as a mom, I think it’s pure joy the moment that baby's put on your chest. That's everything.

Erica

It's life changing. Yeah, my mom used to tell me, “You will never know love like the love you feel for your child. “And this is of course during a time when I was like I don't really know if I want kids. And then that happened, and I remember calling my mom and just being like you were so right! There's no way to describe this to someone.

Jenny

No. Everything changes in that moment.

Erica

It's incredible.

Speaking of your children, I want to talk about Miss Josie.

Jenny

Of course

Erica

We call her Rapunzel in our house sometimes because she does have Rapunzel hair.

Jenny

It's true. It's down to her bum. Now she sits on it.

Erica

How old is Josie?

Jenny

Josie is three. She's about to be four at the end of next month, which is like a huge accomplishment. I feel like that's such a big kid age. It's like no more toddler, we're heading into the big kid relm, which is incredible, but heartbreaking at the same time.


Erica

It is.

What is Josie's favorite movie?

Jenny

Well, she has several go-tos, but definitely Frozen I, Frozen II, both the Trolls movies, and Moana. If it's up to her, it's usually Frozen. About a week ago, I think we watched Frozen I and II five times, and so I quit offering it to her because I'm like, “Girl, I can't. I can't hear ‘Let It Go’ one more time.”

Erica

Oh, I love that.

What is Josie's favorite activity?

Jenny

So she loves anything in water. She loves soaking in the bath, in her hot tub, in the pool in the summer. I call her a little mermaid because you can just tell she gets this weightless feeling and she's able to move her limbs more. It's pretty cool to see. She also likes to be held by us, we call cuddle time “hold yous” in our house. Or watching shows, movies, listening to music, playing with toys. If she's awake she wants to be in the middle of it. She wants to be involved in everything. I love that about her.

Erica

Her experience and you sharing about her experience with the hot tub and water, it's really had us thinking about things that we can do in our lives to bring our kids more joy and getting them in more water is something we want to do. I mean they...you're right, they come to life, this it's like they suddenly can move their arms and their legs.


Jenny

Yeah!


Erica

You know, that has to be so liberating for them.

Jenny

Well, I imagine on a day to day basis...I mean, the fact they can't move much on their own, I bet they feel so heavy, you know, holding their head, moving their arms, it takes so much effort. So to be able to just float, you can see that happiness to take over them.


Erica

It's so inspiring. So thank you.


Jenny

Oh, of course.

Erica

Does Josie have any pets?

Jenny

She does. So right now we have two dogs. Junior, he's our 13 year old lab mix. And then we have Bailey, she's our 10 year old Pitbull mix. They're both our shelter dogs. She adores them. The past six months or so she's really been taking an interest to them and wanting to pet them. She loves being around them. And what's funny is actually next week, we're adding another little furbaby into our crazy family.

Erica

Oh, I love it!!!

Jenny

We're excited. We're getting a mini goldendoodle. I've only ever adopted shelter dogs. So this is completely new to me. But we wanted to bring in another animal since my lab is so old and I think our other dog would be resistant to letting another animal into the family if he wasn't in the picture.


So we tried to get a quarantine cat about a year ago. Josie was allergic, which was a huge bummer. So we've been looking into dogs, and we kind of settled on the mini golden doodle because they don't shed. They're smaller, they're 20, 25, 30 pounds. They're easy to train. So I am so excited to see a dog that we can actually be close to her because Josie loves our dogs but they're big. And with all the machines, it's work to get them around her. So to have a dog that can lay next to her or even on her you know I'm I am so looking forward to it's going to be her little artificial therapy dog.

Erica

That is awesome! I love it. That is so exciting. Oh my goodness. Do you have a name picked out? Or are you going to wait until you meet them?

Jenny

We've already decided, his name is Loki.

Erica

I love it.

Okay. I think I know the answer to this, but I am excited to hear your description…

Does Josie ever get sassy or annoyed? And if so, what is the cause?

Jenny

Every single day, every day this girl is sassy, she's annoyed with something. I mean, the eye rolls, the dramatic sighs, the growls...you know this, your kids put you through the same thing. And she's recently started saying “Uh uh”, she'll tell you “no”. It's this little “uh uh” sound in the back of her throat and it happened...when it first started happening, I thought, “okay, she's she's answering me.” She says “no”...but maybe it's a fluke. But now, it's all the time when she's awake and you ask her a question, and she will