Hosted by Erica Jolene with special guest Jenny Park | Transcription HERE
This is a new version of an Afterthoughts episode. This episode includes four different outtakes of conversations that I had with Jenny Park from last week’s episode “Love Needs No Words”.
This episode includes some snippets of our conversation, parts that I edited out not because they lacked in importance. These pieces range from goofy/serious, from light/heavy, and from casual/intimate.
We discuss the Disney songs that get stuck in our heads, the difficult decision to pivot careers, the role our kids play in research, medicine, and science, the ability to communicate without words, and the struggle of navigating anticipatory grief. These outtakes were incredibly vulnerable, revealing, and just really stood out on their own. I will simply be separating them with fragments of music between each. If you listened to the previous episode, you will likely be able to tell what topic we were discussing which led to these outtake conversations. Jenny's account on the story and journey of Josie's life can be followed on Facebook HERE.
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Welcome to another Afterthoughts episode here on Atypical Truth. I'm your host, Erica Jolene. This is a new version of an Afterthoughts episode. This episode includes four different outtakes of conversations that I had with Jenny Park from last week's episode, "Love Needs No Words". This is a very different structure than what I have done before and I'm going to explain why, but in order to do so, I'm gonna have to get real vulnerable with you for a moment.
So, here is the thing, since my children were born, my ability to socialize with people, it kind of went downhill. I used to be an extremely social person, I definitely would have been described as a social butterfly. I was that person who could float around the room and engage with just about anyone. And if you know me, you know this to be true already. Connecting with people, it just came easily for me, and I never really experienced much social anxiety with it. Since my children, and in the days before COVID, I really struggled with severe social anxiety whenever I was in public, or in a group setting, like when friends were gathering or if I was at a concert, or a cookout, or a wedding. I just kind of forgot how to converse with people. It stopped being easy. It started being something that I had to put a lot of forethought and effort into. You know, a lot of it is because I just really didn't know how to handle the very basic interactions. I could sense when someone very casually asked how the kids were doing and maybe didn't want or expect the heavy or, as the show is appropriately titled, the Atypical Truth. In these casual interactions with people, they just kind of wanted a generic response, something like, "We're doing great, how are you doing?". And I have no problem giving that because in many of these interactions, I also don't want to exert the energy of sharing my Atypical Truth. However, there are some situations that take a while to truly know where you stand with all of that. Some friendships where perhaps I thought they were here for the full truth of our situation, but it ended up being too much, too heavy, too dark. And, you know, I totally get that too. I was that friend once as well. I think that's what made it easy about being a social butterfly, I didn't have to connect deeply with people.
Unfortunately, though, as a person who is standing there with a lot of heavy stuff, heavy stuff that has authentically become a part of who they are, I can sense this change in our friendship. Unfortunately, it often isn't sensed until I see the shift in their response that comes perhaps in the form of posturing their body language or a change in their vocal tone. I think you know, the ones I'm talking about - all that nonverbal language that just loudly screams, "I am uncomfortable!" And that, my friends is where my social anxiety kicks into overdrive.
For situations like the one I just shared, it is something that will haunt me all night long, if not for several days following the interaction, all stress constantly over the one thing that I said that was probably just too much. And then these feelings and this stress, it consumes me. The fact of the matter is, I don't know if I'll ever be good at figuring out just how much someone wants to know without straight up asking, "how much do you really want to know? ...because I don't want to lose precious sleep over this conversation." So my default mode for these kind of casual interactions is to just be simple and inauthentic with what is actually going on.
And I think that's okay. Because no, not every acquaintance needs the details. But it is a struggle, because I am proud of the fact that we have survived and thrived, in spite of all the heaviness. And I really want to share that resilient aspect of our lives with others, without diminishing just how hard the battle has been. I think we've earned that.
What I'm happy to share is the fact that there is one interaction, I never have to worry about being too much - and that is the interaction I have with fellow parents of a disabled or medically complex child. Outside of my closest friendships, I know instinctively that when I'm in the company of a fellow medical caregiver, I don't have to filter myself nearly as much. We intrinsically know the weight of each other's lives. And we truly get to relish in the opportunity to let our walls down, get right to the real stuff, and come to the conversation as our authentic-selves. And that my friends, is basically what happened when Jenny and I had our Zoom date.
We were scheduled to talk for an hour, but I don't think we stopped for nearly three. Just as our kids had so much in common, so do we as mothers and caregivers. We really get the opportunity to chat with people whose lives are so relatable to our own. And there's no telling when we would get this chance again. So this episode includes some snippets of our conversation, parts that I edited out, not because they lacked in importance. No, these pieces ranged from goofy to serious, light and heavy and from casual to emotional. We discuss everything from the Disney songs that gets stuck in our heads, the difficult decisions to pivot careers, the role our kids play in research, medicine, and science. The ability to communicate without words. And the struggle of navigating anticipatory grief. I will simply be separating them with fragments of music between each. And if you listen to the previous episode, you may be able to tell what topic we were discussing which led to these outtake conversations. This won't be the structure for every future After Thoughts episode, but it's fun to switch things up every now and again. And I hope you guys enjoy.
What is Josie's favorite movie?
Well, she has several go twos, but definitely Frozen One, Frozen Two, both the Trolls movies. And Moana. If it's up to her, it's usually Frozen. About a week ago I think we watch Frozen One and Two five times, and so I quit offering it to her because I'm like girl, I can't. I can't hear that "Let it Go" one more time. (laughter from both)
Oh, I love that. I'm pretty sure that it's just on repeat in our heads. I wake up in the middle of the night and I hear one of the many movies or shows and at this point we have fun with it. We sing it. We laugh when it happens. But there's also a part of it where I'm like, "My sanity is at stake here."
Yes! It was the same when Noah was little I mean they like the same thing on repeat they cannot get sick of something.
I get it it's comfort shows I have been bingeing Schitt's Creek over and over because it brings me comfort.
See, now I'm a little darker I would rather watch like Dateline or 48 Hours if I need a good comfort show.
Oh, girl, I do that too. (laughter from both)
I love it.
I'm glad to hear I'm not the only one that's into that.
Nothing like a good murder mystery to relax after a long day.
So Jenny, I know that you are an educator, can you tell me about what grade do you teach?
It's kind of funny because I've had to make a huge shift in my career since having Josie. My degree is an elementary education and originally I taught third grade. My dream job, dream age. Loved it. Then I had Josie and realized I cannot go back to a job that is keeping me away from the home 40 plus hours a week, let alone all the things I was bringing home and taking on. So I changed my job to I'm an English interventionist at our local alternative high school.
When I first heard about the position, I was terrified. I mean to go from teaching cute little eight year olds to high school students, in an alternative setting. I was like, "Nope, can't do it." But I realized that this job could provide me with the flexibility that I needed. It's three quarters time. I mean, if I have to take time off, I don't need to write sub plans. For the most part, I can leave my work in the building and come home and be a good mom. And so I teach ninth through 12th graders. And I'm really a support for those kids that can be in typical English classes, they just need more support with their reading and their writing. So I support them in whatever that may look like whether it's in the classroom, helping them during instruction, or one on one time, small group teaching.
It's really been a godsend for me. I've loved it far more than I thought I would I love the people I work with. That's awesome. But I also like the fact that it's flexible. I mean, I've had to take a six week medical hiatus, and it wasn't the end of the world. I couldn't do that if I was teaching third grade. So this is where I need to be where I'm at my life.
I wouldn't care about anyone else around me and how they felt if I was having 200 seizures a day. You know, I would be suffering, but she really does let us know. I'm okay. It's going to be okay. And I've seen that numerous times in the ER, or the hospital where things are so, so bad, but she's in the best mood. She's smiling everyone she's drawing nurses in. I think she can read people's energies and emotions around her. So when we're stressed, somehow her little old soul thinks, "I got to let them know I'm okay. I can do this. I'm okay."
I can speak on behalf of that experience of being that kid in the hospital, not being able to communicate in a typical way. And I fully believe that I have a sixth sense when it comes to body language, feelings, energy. And it really stems from those experiences for me of reading that room, of seeing a certain look in my mom's face and knowing that I need to, in some way communicate, "I'm okay. Don't worry about me." I don't know where it comes from. It happens at a very early age. I think it's just a part of this journey for people who do have to overcome certain obstacles in order to communicate their status, where they are, how they're feeling. Well, it's a gift. Really, it's a gift, in so many ways.
Do you feel like your own experiences as a child have helped you better understand your own kids than what they're going through? On a deep level? I'm sure.
Yeah. Yeah. And it's hard because of that.
I'm gonna cry....
Awww...I'm sure you feel they're suffering there.
So I used to suction myself.
Oh my gosh.
my mom says she remembers walking into my bedroom because she heard my suction machine going off. And I had crawled to the edge of my crib, reached over, grabbed it and started suctioning my own trach.
Oh my goodness.
it was like you were not even two years old. And you were just like, you knew you needed this and you did it to yourself. So throughout my life, I've had a number of scopes and ENT visits and I just had one couple months back and not a lot of people know this about me, but I have a severe paranoia about things and my nose because I didn't have anything come in or out of my nose. Not even air. Snot came from my trach. All of that stops here. (points at throat)
Oh, that makes sense...
so when I have a cold, I'm just really obsessive about getting my nose cleared. Allergies are the worst because everything is in my nose. I hate it. I, I am one of those people who's like constantly like this (rubbing nose), and I don't even care what that looks like. If it looks like I'm picking my nose. I don't care because the feeling is so bothersome for me. But during that scope procedure, I got in my car and I just started bawling. And I went home and I said, "girls, we need to really consider when we have to deep suction these kids because I just had a scope go down my nose and it's about the same size as that suction catheter in it's the worst, the absolute worst feeling." And I kind of started thinking about how, how it wouldn't be the worst thing if Caratacus needed a trach. That was a conversation we had very recently and it happened after this appointment. And after I was just kind of confronted with some trauma from my past, and I realized with the trach, I could get everything from right here. It wasn't irritating my nose. It wasn't causing me to gag. It wasn't scratching the back of my throat.
It's just like the G-tube. My aunt at the very beginning of Margot's journey with an NG tube. She said, "Erica, I know that you are fighting the G-tube. I know it feels life changing for you." But she had just had a back surgery, her throat swelled shut. She had have an NG tube for several months, she fought for a G-tube because she said it's so annoying. She says it's irritating. You feel it in your nose, you want to rub your nose. She's like, "I just keep thinking about how Margot can't relieve herself." And so now, every time I suction my kids, I'm like, "I'm so sorry. I'm so sorry," I rub their nose. I do all the things that like I think would give me some relief if my throat and my nose was being tackled like that. So yes, there are some things that I understand because of my experience. Some of them are really good.
But it makes it really difficult.
It does. It really does. It's kind of taken me a while to really see how much of that comes from my experience because I am partnered with someone who does not have that same medical history. And things come naturally to me that don't come naturally to him.
Because I feel it like I hear a sound and I'm instantly triggered back to that moment of having that feeling in my throat, oh my god, and I will be in the room coughing for them until we get that out because it just sends me back. There are things that are there because of my past. But in so many ways, there's not. Like I, I could scratch my nose, I could do things for myself.
I could suction myself when I needed it. They have to wait there for us to come to them. And that's something that I will never be able to relate to or understand. And that part's hard because having known that I had the independence to do that instantly when I needed to, to know that they don't it's hard. It's a gift. It's a blessing in this very strange, cyclical way. But it's also it does make it hard too. There's something about the bliss of ignorance, and I think I think we can all agree sometimes there's things that you would just be better off not knowing until you have to know. Anyway, I digress. Sorry.
No, you're okay.
I have to selection Josie all the time. And I hate it. In December when I had a COVID test and I about died. You know when they shoved that thing up into your brain and I'm thinking, "oh my gosh, I do this to Josie several times a day." It's this, as a parent things you know, that are uncomfortable that you have to do for your child - it's hard and it's a level of guilt. I feel terrible.
I do find some comfort when I think, "okay, this is their norm." In a way. They're desensitized because it's happened so often.
And it gives them relief. At the end of the day.
There's an outcome.
You're doing it for a reason. I know Josie at the same time got a COVID test that, we did our family was exposed, and of course I got it up both nostrils. Noah's watching me. I'm like, "see, buddy. It's not bad." And they do it and I'm coughing. I'm crying. I'm gagging. I can't talk. I grabbed the nurse and he's in the corner of the room crying I'm like, "Oh no, I should have had him go first." And our in-home nurse comes and gives Josie a COVID test. She didn't even flinch. She was like whatever. It's another day. Turn on Disney channel.
Like swabbing our kids. They're like, Oh, that wasn't bad at all. Like oh yeah, this is they go through nothing and this is a break true. Oooooh.
Soak in your child every day that you have them because they are a gift. You don't realize it till you're on the other side of that grief. And that took me about a year to stop saying, "Well what if she was walking? What if she was talking?" This is what I thought her life would be and then you realize...shoot, I wasted a lot of time just being in that grief. And you have to go through though. At the same time, soak them in. These kids are a gift from above. Soak them in every day that you have them.
You know, I had a good friend who went through something pretty tragic with her own child. It was amazing that she got to live because it was unexpected and defied everyone's predictions. But she did pass away eventually. And she was with us a very short time, I had the privilege of being her godmother.
And I'll never forget when my friend Alison came to our hospital room, when things were really looking pretty grim for Margot - it was like the first day or two that she was alive. And she said, "My biggest regret," she said, "it was that I planned her funeral before I celebrated her life." And she said, "I just want you to enjoy this and not think about the goodbye because no matter how you try to prepare for that, it will never go as you think it will go, it will never be easier. And you will miss out so much while trying to prepare yourself for that loss." And you know, her words, really, I've carried those every day. I've gone through this twice. And I can tell you, it still happens. You're still gonna do it. Maybe I had a little slice of advice to help me. And also a friend who I knew I could rely on when it's like "gosh, I just keep doing this. I don't know why I'm doing this." And she could say "yes, I know I get it. But don't. You have to stop that."
You still do. And you know, kradic is was born with the same condition. And yeah, I still did that in a way. So it's going to happen. But hear, Jenny, to anyone who's listening right now, listen to her words that have just brought me to tears and listen to my when we say take in every moment and don't compare it to others. If you can help it, give yourself that moment, because you're gonna have it and then let it go. What we're living is ,you cannot compare to anyone else. It is incomprehensible, in sad ways, but also in the most profoundly beautiful ways. And it just won't even get this until you are living it.
I'm so glad you shared that advice from your friend, because I haven't really talked to anyone about that. But I do the same thing like you almost plan goodbye - the funeral. Like I'll admit it that I have done that. When Josie is doing terrible, and she's bleeding, and she won't stop for days on end, that's where your mind goes. And it's almost impossible to shut that off and just say, "I'm just going to take it one day at a time." I mean, you try but it's a conscious effort to say, "Things are terrible right now. And I'm going to try really, really hard to be positive because that's what Josie deserves." And if Josie not complaining, I shouldn't either. But it's I think it's almost our brains way of being realistic.
We held on to hopes that our kids are going to live 30, 40 years and eventually walk and eventually talk. I mean, can you imagine the letdown of that? I think our brain trying to almost process the horrible time when our child's lives ends...that's our reality. As hard as that is.
That is given many certainties. We don't have the luxury of thinking about the day they get their driver's license, the day they get married. The day they have a kid of their own. But there is the certainty of death.
In my mind, I try to think about like, how can I make that beautiful? How can I celebrate and honor her when that time comes? I have gone so far as to hear a song and go, "This means to play at her funeral and then like thinking, "What the fuck am I thinking?"
I have a list! I have a list ERICA! Yes. I do the same thing. And I don't share that with people. But that's the honest truth. Yeah, my head is there sometimes.
Yeah. And it is a way of preparing us for the worst possible time in our life.
But we also know there's no preparation for that. No matter how much you prepare it's going to happen and it'll rock our world.
We know that logically. Yeah. But we still do it. And maybe it is that trade. Maybe it's like, okay, I don't get to plan the wedding and the dance of my daughter and all of this stuff. But I've got this thing. And when that time happens, man, I'm going to make it beautiful for her.
I never thought of it like that.
And what I forget in those moments is like, "Okay, let's make now beautiful for her, though. Let's go play those songs now and make those memories from now."
And it is a conscious effort to turn it off.
It's a battle.
I don't, I don't think we're alone in this. And it's that really uncom. I think if we normalize these conversations, we'll all find that we share the same feelings, the same fears. Also the same comfort of thinking about those things sometimes.
As much as you don't want any other parents to feel this way. It is some sort of reassurance to know. I mean, just hearing you say that I was like, Oh, my gosh, I don't share that with people. I mean, that's like your deep, dark thoughts that you just try to push away. But to know, there's other parents that feel that same way. It's like maybe that's just a part of having a medically complex kid that people don't talk about.
It absolutely is. It is. And we understand why we don't want to talk about it. I mean, it's hard enough that those things on your own, let alone put them out there to the world with words.
I hope that if we include this, that it does help other people to feel comfort and knowing they're not flawed to have those thoughts. It doesn't mean that they love their child any less, it doesn't mean that they're looking forward to death. This is a natural part of it. In no way are we trying to rationalize what that's like, because I'll never, I know I'll never be able to imagine it. I know I'll never be able to understand it.
And you don't want to.
I'm simply saying it's okay to it's okay to sit with those feelings about how you train and kind of pre cope your body. Bear yourself. So that didn't come out quite as I had hoped. Because it's such a sensitive subject.
It is. And I think you know, to, you know, I don't know, like, I hold that so close to my heart because I know someday you'll like be a part of that club, that group don't want to be a part of and you can envision what that's going to look like even though nothing you do could prepare you in any way shape or form. You know, that's coming.
Not a lot of people know this about us, but we live really close to an older state institution. Well, it's still used. It's creepy. I'm not gonna lie. It's a very creepy...
...large campus filled with buildings. And I don't I think it's it was 18 hundred's maybe early 1900s when it built, don't quote me on that. I'll have to double check that, I'll do some fact checking. So we would take our motorcycles out, we'd go to their campus and when ride around because there were all these really nice roads, there wasn't any traffic. In the middle of those roads were just fields have unmarked graves. And I remember being so creeped out by that. And then we had Margot, and I went back there. And I thanked all of those graves for what they gave to my daughter.
Because historically, there have been some pretty awful treatments, and some pretty awful medications used in order to give our kids the peace that they get, or at least a little bit of a break and relief that they get from some of the seizures. And I just remember thinking, "My kids are part of this."
They are a part of that journey.
Thank God they aren't the ones out here in this mass graveyard. But they are a part of helping the future of medicine.
In a werd way, as a researcher, that brings me some comfort.
If there's one contribution to this, it's to help others. Does it feel fair? No. (both state at once)
Not at all.
You have to find your silver linings in this life. And I think for us, especially when you have a rare condition, it's all about how can we educate others? How can we reach others? We might only know of one other family with this but we do know that there have got to be others. How do we get this out there?
So much of what Jenny and I touched on in this episode are really just small snapshots of much larger conversations. Ones that I'll go more in depth into in later episodes. I hope you all enjoyed. Thank you for listening to Atypical Truth Afterthoughts Episode with Jenny Park. If you can relate to this content, and you're interested in being a guest or hosting your own conversation, please don't hesitate to reach out to me. You can reach me through the website at atypicaltruth.org or you can find Atypical Truth on Facebook and Instagram.
If you can relate to this content, and you're interested in being a guest or hosting your own conversation, please don't hesitate to reach out to me. You can reach me through the website at www.atypicaltruth.org. You can also find Atypical Truth on Facebook and Instagram.
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