Hosted by Erica Jolene with special guest Jenny Park | Transcription HERE
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.
Research conducted in relation to this podcast, "Telling the Atypical Truth: Disability Community-Building Through Podcasting," can be found HERE.
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&#x