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'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 tell you no. So that's another big sassy thing we're dealing with now.
Erica
Wow. That's amazing.
Jenny
It is amazing. It's incredible.
Erica
What a milestone! Oh my gosh….
Jenny
Who would have thought? And of course, she learns to say one word and it’s No. (both laughing) I mean, that's just, that's just who she is. She's going to tell us how she wants things and let you know when it doesn't go her way. And she definitely doesn't have a certain something that makes her annoyed. I mean, one day, she's mad that you're doing her hair, or the commercials during a movie or pissing her off.
And so it's just day by day what bugs this girl, but definitely physical therapy is a big one that irritates her. And it's been so funny to watch because her physical therapist is incredible. She's been with us since we brought Josie home from the NICU at two months old. She is the most upbeat, happy over the top, positive person. So to see the dynamic between her and then Josie who's fake sleeping...It's hysterical. It's pretty funny.
Erica
That is hilarious! Oh, that is hilarious. There's something about physical therapy and our kids, they sure know how to play possum when they roll around. I mean, any therapy at this point. Caratacus is a pro at that. I mean, it's actually impressive because it is our one, I would say, example of them being able to know about what time in the day it is. Because without fail, they will fall asleep...
Jenny
Oh, yeah.
Erica
...20 minutes before therapy starts in your life.
Jenny
They wake up right at the end of the hour therapy session and they're yawning and they're stretching as the therapist is packing up. They, they know.
Erica
Oh, yes, they do. It's impressive.
Jenny
It is.
Erica
So we've talked about Josie sassiness, but I also know she has the most beautiful smile and boy do those eyelashes set that smile ablaze. I mean…
Jenny
The girl has some eyelashes, that's for sure.
Erica
What makes her smile? And how would you describe that and that happiness for those who've never met Josie?
Jenny
So I think her family, especially her big brother, Noah, he gets the most smiles, eye contact, everything. Um, her nurses, her dogs, I notice her smile a lot of you know, the people she's used to seeing every day. She's very expressive with her facial expressions. So when she's happy, even if she's not smiling, her eyes are wide open. You know, she's looking at you. She wants to engage with you. Where if she's annoyed, she's rolling her eyes, she's turning the other way. So I think it's pretty easy for someone, if they took the time to really look at her and engage with her to gauge her facial expressions. She's good about getting her feelings out there. Her smile can light up a room and lights up her entire face. So when she's happy, and she's smiling, you know. It's infectious.
Erica
I love it. Yes, it is. From someone who's only witnessed it online. It definitely is. So...
and you're right, those... I call them soul smiles because….
Jenny
YES!
Erica
...everything about their body and their eyes, you know they are so happy in that moment. They may not be expressing it in a typical manner, but everything about them is just looking at you in adoration and...
Jenny
Yes!
Erica
...with love. And it's a soul feeling. And I think it really does take someone pausing and seeing them as a person, recognizing that same ability within themselves and going, “Yeah! I know that. I know that look.”
Jenny
I love that...a soul smile, because that's exactly what it is. It comes from within. And it's impossible to not feel that joy and that happiness.
Erica
Yeah.
We've talked a lot about Josie and, you know, I know a lot about her, our listeners may not have that opportunity to know as much about her right now. So can you tell me a little bit about Jesse's diagnosis and the medical complexities that have come with that?
Jenny
Yeah. So Josie was diagnosed with MMPSI, or malignant migrating partial seizures of infancy. It's still a mouthful for me to say. It's due to a KCNT1 gene mutation and she was diagnosed with that at about seven weeks old, after genetic testing. And so it's a rare and severe seizure disorder, as you know. She's had seizures within hours of birth and she's only had a few seizure free days, and that was before she was one. Fifty seizures a day is a good day for us. I mean, it is a daily burden that she deals with. And we could have 200 seizures a day, on a bad day. And her seizures have proven to be very resistant to any kind of treatment. At this point, she's failed about 15 seizure meds, the ketogenic diet. She has a VNS, or vagal nerve stimulator. We haven't noticed any real benefits from that. And yes, we've tried CBD Oil, we went down that route, I always have to add that in. And nothing really seems to help her seizures, unfortunately, and so we deal with them the best that we can.
And Josie also deals with a variety of other health issues that come along with having daily seizures and the developmental delays that come along with that as well. So she's been diagnosed as legally blind with cortical visual impairment, and optic nerve damage. She also deals with urine retention from a suspected neurogenic bladder. I mean, basically, her brain is damaged from the amount of seizures that she has. So anything dealing with muscle tone, or daily bodily functions, for her is compromised and difficult. She is unable to move much on her own. And she has a G-tube feeding tube, that's how she gets all of her nutrients and meds.
Over the past year or so we believe we're dealing with possible brain stem deterioration. We can't do an MRI because of her VNS at this age, and I think it would rather be here nor there, but she's really unable to regulate her own body temperature. She deals with secretion issues, we see heart rate changes, and so her body is just unable to regulate any bodily function at this point.
But probably the most difficult aspect of Josie’s condition is her pulmonary collateral issue, and this is due to her genetic mutation. Not many kids have it, I only know of a handful. And basically in layman's terms, she grows extra arteries. So originally, they just grew from her heart to her lungs. But now they grow off of other arteries as well. They all grow to her lungs, and dump into her lungs, and they cause her to cough up blood. And we never have any sign of when that's going to happen. But right now it's happening probably two to three times a week on average. And when we first became aware of this issue, she was about one and a half. And we put her through multiple procedures to try to stop the growth of these collaterals. They actually go in with little catheters through arteries in her size, and they sneak up in and then they'll put Platinum coils in to try to coil off any flow through those collaterals. We did four of those procedures, but it became quickly apparent that this issue is something that we can't stop. I mean, her collaterals are growing in size and number faster than we could keep up.
It was right around her second birthday when we made the decision to stop treating her collateral issue. I think that was a pivotal point in her life as well as our life, as her parents we decided we're going to keep her home uncomfortable as much as possible. Up until that point, we had been super aggressive on trying to fix things, but once we realized she's living her life in the hospital and going through surgeries that aren't fixing this issue, we really decided: let's take her home, let's make her as happy and as comfortable as she can be.
So because of this respiratory issue, she needs constant oxygen support. She's been on oxygen for two years now constantly. We always have to be very close to her suction machine, in case she has a bleed. That's what has kept her tied to our home.
I think that is one of the most difficult parts is that she has missed out on a lot of typical childhood experiences just because she's stuck in her home for the sake of her own safety. We would have never imagined that she would be able to go on this long with such a severe medical issue. I mean bleeding into your lungs several times a week. I don't know how the girl keeps doing it, but she just adapts and keeps pushing. It really is around the clock care, eyes on her 24/7. I mean, my husband and I, we couldn't do without each other or without our two full time nurses that take care of her.
We're really tied to our home. We are truly trying to enjoy every moment we have with her. And I have learned to not count that girl out. Because as much as she has going on, she just keeps going. She just keeps pushing. It's incredible.
Erica
Wow!
Can you tell me a little bit about how you balance being both a medical mom and an educator.
Jenny
It's definitely a challenge to balance my career, and family life as you know, or any working mom. But I think Josie's condition requires so much for me physically, mentally, emotionally...it's very difficult to make that separation. And even though she might be having clustering seizures, to walk out the door and go to work has been very difficult for me.
My job is truly a godsend, because I'm not meant to be a stay at home mom. But I think when you have a medically complex kid, this might sound terrible, but it's the truth...you need a break. Every parent needs a break. And so for me, it is wonderful for me that I can get out of my house six hours a day, go be around other teachers and like-minded people, do something I'm passionate about, and then be able to come home and take care of Josie and Noah. So it's been difficult, but I take it as a much needed mental and emotional break to say, “I know Josie is at home being taken care of by her wonderful nurse. I'm going to go do my job and provide for my family.”
So for me, I think having that outlet is needed.
Erica
Yeah, that's so important.
What steps did you take in educating yourself on Josie's diagnosis?
Jenny
When Josie was in the NICU before we had a diagnosis, I think I became obsessed with researching. I wanted to figure out: Why was she having seizures? Why is nothing stopping them? So I felt this intense need to figure out what was going on. How can I fix it? What can I do?
And once she was diagnosed through genetic testing, I realized there wasn't much out there. I mean, MMPSI is such a rare diagnosis, and there's more now, almost four years later than there was before. It was really dry, scary medical reports that just talked about poor prognosis and early death. I realized that as much as I need to educate myself on Josie’s condition, and how I can best take care of her, too much research can be a bad thing. It's easy to go down the rabbit hole and just focus on all of her medical diagnosis and issues. Now I really save my research for new medications we might try. But other than that, I think now I'm more educating myself on the best ways I can take care of her.
I've learned so much through our Facebook support group, from you, and other moms, other parents who are living this and just being able to see the faces of these kids. It's been such a resource for me, I mean, even Josie’s doctors have said, “Well, ask in your Facebook group about this medication, or about this treatment,” because we are lucky to have that wealth of knowledge. So I do, I turn to our support group quite a bit. But I've learned to keep the googling and the Web MD to a minimum
Erica
(giggles from both) And you know, I'm sure doctors and providers do appreciate that to an extent because there are a lot of things out there. And we know what is applicable to my kids may not be applicable to yours, despite their similarities.
Jenny
For sure.
I think I think too, when you have a child with such a rare diagnosis, you have to know the in’s and out’s of them and their treatments. And because I can't tell you how many times I mean, we've never been in a medical setting where a doctor or nurse said, “Oh yeah, I've heard of that,” or, “I know what that is.” Instead, they're asking you questions about, you know, this genetic condition. And so you have to really know your stuff and be able to educate the professionals on this and be the best advocate for your child. It's difficult.
Erica
And I think from what I've heard so far, they appreciate that, they do. One doctor described it to me, he said, I mean, it's amazing that we found one other family that we're certain of, we know, now we have the data, the shared DNA report that their daughter had the same condition as ours. We found each other through Facebook.
Jenny
That's insane.
Erica
He said, “We are in a world now where you can find the answers faster than our research just by getting out there sharing your story and finding people who are experiencing similar things.” They see hundreds of thousands of patients a year. And yet they still see so few of us rare cases and that makes sense when you look at how small our group is.
Jenny
Yeah…
Erica
Specifically for malignant migrating epilepsy…(stumbles saying the full name)
Jenny
Yeah. (both laughing)
Erica
So I always refer to it as MMPSI. But yeah, I mean, they will admit they see things that are comparable and based on maybe some certain developmental issues, they can say with confidence, “maybe this is possible, or might not be possible,” but at the end of the day…
Jenny
They don't know…
Erica
...when it comes to these rare genetic mutations, they just don't know.
Jenny
And I think that's the hard part. Our kids are such a step ahead of science at this point, that we have to learn everything that we can.
Erica
And isn't that crazy?
Jenny
Yeah, that for many years, I think that broke my heart the most. My daughter will not get the cure, she probably won't see in her lifetime, the medication that's made that can actually help her seizures, or some treatment that might stop these collaterals. What's helped me is, I feel like part of Josie's purpose is to maybe help. The next time a doctor does see a kid with the same diagnosis, maybe Josie’s information in her life can help further kids and further treatment.
Erica
Absolutely. Thank you for answering that question, because I did wonder, as an educator, how you handled that. So taking that one step further. Your son, Noah, who you mentioned earlier, how did you convey to him what was going on with Josie?
Jenny
That was very difficult, because we were in the trenches of trying to understand and grieve the life we thought Josie would have, as well as would have with her brother. I remember she was in the NICU for 59 days, so almost two months. And so here, you go to the hospital and say, “Oh, I'll be home in a couple of days with your baby sister,” and then you don't bring the baby home.
At first we told him that she was sick, and she had to be in the hospital to get medicine. And then we slowly started telling him more and more, but we really waited until she got home. And then we were an open book. “This is what seizures look like, this is why I have to suction her, here's her g-tube, this is how she eats through it.” And so we really were an open book with her care and what she was dealing with on a daily basis. I wanted him to be involved in that. I wanted him to know that he could have his questions answered.
I mean, that kid is so knowledgeable on medications and oxygen usage. It wasn't that long ago, we were in the drive-thru of the pharmacy and one of the pharmacy techs pronounced one of her medications wrong and my son's in the back correcting him. I'm like, Oh my gosh, I've created like a little medical monster, but he just knows so much.
Erica
...or maybe the perfect medical monster. (laughter from both)
Jenny
Very true. But I think just being so involved in her care, part of loving Josie is taking care of her. And so he sees all this. The one thing we really kept close to the chest and didn't share with him until recently was her life expectancy. That was one of the most difficult things to kind of navigate. How do you tell him that when you don't even know? I don't know how long Josie will live and how could I prepare someone who loves his little sister so much for that? So it wasn't until this past fall when she was doing very bad. We actually had a Chaplin come in our home and bless her. We thought things were going down a really bad path and we tried to prepare him for that the best that we could. And as a parent, that's probably one of the most difficult things I've ever had to do. He carries a lot of stress. He's a nervous kid by nature. So the last thing I want is every time her alarm goes off her oxygen alarm, that he's scared that she is dying. Every time she coughs up blood, is that happening? I don't want him to live with that fear. But I also want to be honest with him.
So now he knows a little bit more about the fact that Josie is probably not going to live a long life. Kids like Josie get called back home to heaven early by God. I don't always know how to help him with that. We don't talk about it that much. I think we just are all trying to enjoy our time with Josie. But he's very knowledgeable on her condition, on her oxygen use. He's such a help. He just learned how to suction her and he's so proud of all those little things. He wants to be involved. He always has.
Erica
It really surprised me. I mean, I know that he knew a different life before Josie entered his world. But in a lot of ways, he doesn't know a different life. And I'm realizing, I see that in my niece who wants to be there for every diaper change, check the poops, make sure they're the right, help with flushes of their meds. do the feeding pump machine. I mean, she's right there. She's in it. She gets anxious when she hasn't seen the babies. I mean, the day that we went to St. Louis, she was just all worried. “I'm not going to see them tomorrow? They're going to be in St. Louis? Well, can I go over there tomorrow night, when they get home? And so we got home and we went over there to visit with her separately. One of us is at the house, one of us visiting her, and it's just, “How are they? Are they Okay? Can I go see them?” It's eight o'clock at night. Finally, I'm like, “If you just need to see them. Yes.” I mean, that is a part of her normal. Yeah, it's just so amazing to me. The way she approaches our kids is the most love and normalcy that they'll ever get from a peer their age.
Jenny
Totally agree. It's pure, it's pure. It's unconditional. That's how I kind of feel about Josie and Noah is their relationship is just based off of their love for each other. It's not what Josie can do, or the things they do together. Noah genuinely loves to see her for who she is. And just like, you know, I feel the same with Josie’s cousins. Yeah, they love her for who she is. It's beautiful to see that kind of relationship just based on pure, unconditional love. There's nothing like it.
Erica
Do you have any suggestions for families who are facing that similar conversation with siblings of their complex needs children?
Jenny
This question is very hard for me to answer because Jordan and I went back and forth on how to tell Noah about the fact that his sister most likely not live a long life, we went back and forth on that for years. And I would say go with your gut. There's no right or wrong answer to how you approach it, you really just need to gauge the situation, no one can tell you the right time to talk to your child about something that deep. I would suggest possibly seeking the help of a palliative care team or hospice team that can connect you and your children to the resources they might need. Because that's heavy, that's something you shouldn't have to carry on your own. So reach out and get the support that you and your kids might need
Erica
That’s a really good answer. I like that.
Has your approach to educating able bodied children, or even just people in general about disabled medically complex individuals, has that changed since having Josie? I'm sure you did it as an educator, especially having a variety of students in your class. How did having Josie change that for you?
Jenny
I mean, I think as an educator, I did see the need to introduce kids to different media stories, videos of kids of different abilities, of different races, cultures. I mean, that's your job as a teacher, that's your job as a parent because that brings about knowledge and acceptance. But since having Josie my approach to educating others about people with disabilities has changed in every way.
I mean, to be honest, people with special needs, they weren't necessarily on my radar before I had Josie. I didn't have anyone in the family. I didn't know anyone that I was close with who had special needs or disabilities. And so now I see that deep need to educate others on Josie as well as other people with special needs because I want to help make that move towards acceptance and inclusion. I mean I share so much about Josie’s story on social media because I believe people need to be aware of people with different needs and the fact that their lives are no less than anyone else's because of their struggles, their medical needs.
You know I hope for a day when people are more accepting and kind to people like Josie, to our kids in general. So I take it upon myself to educate people, the best I can. I've kind of become an open book in the sense of sharing so much about Josie. And it's therapeutic for me, I have to say I'm a writer by nature, I enjoy it. But I've gotten so much back in return, sharing her story hearing people say, “You know, she makes me realize how strong kids are with special needs,” or I just want to break down those barriers of seeing people for their differences. I want people to see my daughter and see an adorable three year old girl who is sassy, who loves Frozen, who's funny, who loves her brother. That's what I want people to see. That's what I really try to aim for with being an open book with her story.
Erica
I think you do a great job of that. They really do. That's amazing.
Jenny
Well, thank you.
Erica
Kind of going back to Noah. You know, they say that children who are raised with disabled siblings have a deeper understanding of the vulnerabilities in life that they tend to display, more gratitude, more empathy, more compassion. I don't have this experience of raising a neurotypical child, so I'm just curious what that's like to balance the two. Know what I mean? He is a superstar in his own right. He has a giant heart which he displays in the most profoundly sweet ways. And the love for his sister is something that I personally look forward to when I'm scrolling. I've seen a video of them. Can you tell me more about their relationship and how you've navigated that in your parenting?
Jenny
Yeah, it's hard for me to describe the closeness of their relationship, because I always say you have to see it. They are like little soulmates, and it's always been that way. I mean, since we brought Josie home from the NICU, they've just been connected. I am so blessed in the fact that Noah has never had an ounce of jealousy or anger towards the amount of time and attention that Josie needs. I don't know why, it is just the way that he is. But I mean, just the other night, we were talking about this, and I asked Noah, I said, “Why do you not get angry at us about how much Josie needs?” He said,, “because I understand that she needs a lot of attention. She has seizures, and she needs to be comforted. And she is stuck in our house. And so we have to spend more time playing with her and that's fine. That's how it is.”
So I don't know how he has this deep rooted understanding that she needs more. And I've never had to explain that to him. That's just kind of how he's grown up and understood things.
Erica
He has an old soul. He is wise beyond his years.
Jenny
Yeah, before I had Jo See, he was always very caring and compassionate from a young age. He would know if you were sick or upset at like one, one and a half. But I didn't see the depth of that until I had Josie. And to see how much he cares about her and how much of himself he gives, iIt's never like, “Now can you come say hi to your sister?” It's more like, “Get off your sister, let her breathe for a minute.” I mean, he really includes her and everything that he does. It's hard for me to describe. They are little soulmates.
Erica
I love that it's adorable to see them together.
Jenny
They are.
Erica
I mean, you can see that it was destined, their souls.
Jenny
For sure. I tell Noah, “You were meant to be a big brother to Josie. You're perfect. You're exactly what she needs.” Because it's like you said, that's the most normal interaction that Josie has with another kid. That's the only kid she really gets to see, she doesn't get to go to school. So to have someone that's bringing her toys and showing things to her and doesn't look at her for the things that she can't do. It's pure, it's loving. I mean, he seems to understand her on another level. I know recently, I asked him, because he'll tell me things like,”Oh, Josie, doesn’t want to watch this episode, she doesn't like it.” Or “No, mom, she doesn't like that color of shirt. No.” And I finally said just asked, “Does she talk to you, does she communicate with you?” Because I'm like, “How do you know these things?” And he told me, he said, “Josie just does a really good job of getting her feelings out there. And I understand everything that Josie does.”
Erica
Wow.
Jenny
And it was so profound for an eight year old, I was like, okay. So now I tell people that if Noah says something that Josie likes or doesn't like, go with it, because clearly they have something going on. He'll be at the other end of the house yelling at me, “No mom, she hates that show. Change it.” I go with it.
Erica
That is amazing. Okay, I'm gonna have to start listening to my niece on this more because, you know how kids like to roleplay with their stuffed animals, their dolls?
Jenny
Yeah.
Erica
Lately, she's been talking for the kids and telling us what the kids want!
Jenny
Go with it!
Erica
Yeah! That’s all I can do.
Jenny
I even tell people to just go with it. Just go with whatever. Noah says he understands her better than anyone else. So
Erica
Yeah.
And so how does he go about educating others? I'm sure he takes the lead even when an adult enters your home. How does he do that?
Jenny
He does. He's extremely protective of Josie. I mean, even I have to watch what I say. If I say something like, “Oh, girl, your breathing sounds terrible.”, he's like, “Mom, that is just rude.” And I have to say, “I don't mean it rude.”, and he tells me, “Well, how do you know that didn't hurt her feelings? Let's just try not to say things like that.” So...
Erica
Gosh, I need him here.
Jenny
He’s the best little advocate. So when we have a new nurse, you can almost see that hesitation. And he'll say things like, “Well, she needs to be suctioned now, she likes this, she likes to lay on this side.” And so he does a good job about sharing her likes or dislikes.
Erica
So it's kind of a nice break for you.
Jenny
It is. It's so sweet. And with him being in school now I don't really get to see, unfortunately, much of how he talks to other kids. He does tell me his teacher is really good, she lets him go inside in the morning so he's not outside with all the kids, you know, with the COVID pandemic going on. She's been really helpful with keeping him safe. And so I know some kids will say, “Well, why does he get to go in?” And he says, “Because I have a sister with medical issues. I have a sister with epilepsy.”
Erica
Wow.
Jenny
He does a good job of letting other people know about his sister. He does a good job of painting who she is, what she likes. You know, it's awesome. He had a friend come over not too long ago and his friend actually just came in, sat by Josie like it was no thing. And I assume because their conversations at school are about his sister, what she likes, what she does. It wasn't a big deal.
Erica
I bet that had to be so good on your heart…
Jenny
It was.
Erica
... to see that happen. Oh, that's amazing.
Jenny
Yeah, it was.
Erica
How has Josie’s life, specially considering how unique Josie’s life is, how has her life impacted Noah?
Jenny
It’s definitely made...I think even, it's the same for myself, it opened your eyes to a world you didn't, you weren't a part of. I don't think Noah was very aware of kids with special needs. Now let's say if we were out and about and he saw a kid in a wheelchair, I mean, he would talk to them. He's more open. He's more understanding. I always say I can't wait for the day when he has a kid in one of his classes with special needs because I know he would go above and beyond to include that kid.
Erica
Yeah.
Jenny
So I think it opened his eyes to people of all abilities and what they have to bring to the table, how special they are. He's much, he's just empathetic.
Erica
He's going to do amazing things. I just know it.
Jenny
I always think he'll do something in the medical field, but he has his heart set on being a librarian, a school librarian so he can have summers off. So that's where his heart and soul is.
Erica
So practical.
Jenny
Yes, he has this all figured out. Well, he does have a teacher for a mom. So he sees some benefit, but that's where his heart and soul is. And he says, “I would be a special needs doctor, but I would want to help her there with me.” (Jenny laughs)
Erica
Oh, yeah.
Jenny
It's a lot of pressure.
Erica
How has his love for Josie changed you, as their mom?
Jenny
I mean, watching Noah and the way that he loves his sister and how connected they are, it's truly been one of my greatest joys in life. It has shown me the meaning of unconditional love. You know, as well as taught me that love, it's not bound to words or physical actions or what something can do for you. On the other side of things, it's heartbreaking. I worry a lot about Noah, after Josie isn't with us. I know, unfortunately, he'll have a lot of years of his life without a sister. And I never wanted for him to be an only child. I mean, I lost my older brother when I was 21. So to know the pain of losing a sibling and know that he'll go through it someday, I can't help but hurt for that now. I try to just enjoy, you know, seeing them together now but I can't help but stress about Noah and what his future might look like.
Erica
Yeah. Wow. Thank you for answering that. That's not an easy one.
Jenny
No, it’s not.
Erica
What has been the biggest challenge for you as a parent, or as a family, when it comes to raising both a typical developing child and a complex needs child?
Jenny
It's definitely being pulled in two different ways. I mean, I'm needed by Josie in such an all encompassing different way that quite often I can't physically leave her side. And so, before COVID hit, we were actually taking Noah out and doing things, Jordan and I would constantly have to split our parenting duties. I mean, I don't remember the last time all four of us have been out to do something as a family. And so like when Noah would be in soccer on Saturdays, on a soccer days, one of us would be home with Josie watching on FaceTime, while the other one was there. So I think that constant balance of making sure I'm giving Josie everything that she needs and making sure Noah has everything that he needs. That's really difficult. I never want either my children to not feel like they're getting enough attention from me. And they both require such different attention and different things. If I didn't have Jordan as my partner, where we just kind of silently fill in for each other, it would be next to impossible.
Erica
Yeah…
Jenny
I think it would be much more difficult if Noah wasn't as understanding as he is, there's times I'll have to say, “No, I can't play this game with you right now Josie is having a lot of seizures.” And he's more than understanding of that.
Erica
Gosh, yeah. You know, it's what we wanted, was a neurotypical sibling. And in some ways, I'll be honest, it was somewhat selfish, because we thought we wanted a sibling for Margot and this will always be someone who will love her. And yeah, look after her if we are gone, if she outlives us, there's a big if there...but it exists.
Jenny
And it's a real fear for parents like us...
Erica
It absolutely is. That is an episode of its own. That, you know, it's interesting, because now I could not imagine being pulled in those two directions. I think I would be exhausted. And maybe it does come naturally, you do show up to those events with pride and joy, but the effort and the time and even the exhaustion that's layered with. I don't know if I could do that. And I know that the answer to that is the same answer I've given any person who looks at our situation and goes, “I don't know if I could do that!”
Jenny
I hear that so much. I know you do too.
Erica
You just do it. You do. You just do it, love fuels you. I don't know where the energy comes from, but dang it, you get on there and you watch the soccer game, or you take him to the soccer game because the joy that it brings him fuels you. I love you sharing that. Thank you.
Now we talked about the challenge. What has been an unexpected surprise that came when it comes to raising both a typical developing child and a complex needs child.
Jenny
The biggest surprise by far is how natural, natural and pure the relationship is between Noah and Josie. I mean, when I talk to parents who have a child who is newly diagnosed, they always mention their fear that their children won't get along or that their relationship will lack somehow because of the medical complexities or different abilities. And I mean, I know that feeling myself when I was pregnant with Josie and found out I was having a girl, I envisioned a little blond haired girl with pigtails chasing after her big brother. You know, after going through that grieving process of, “Yes, our life is going to look different.” You come to realize it doesn't have to be any less.
And so I've learned that when you have a child with complex medical needs the relationship with their siblings, it's more deep. It's more meaningful. It's like I said earlier, it's truly just based on loving each other and loving who they are, and being in the same presence together. I mean, it's something that words, you know, words aren't needed, physical actions are needed. And it's beautiful to see. And I think, I mean, you can say this too, I am one of the only moms that can say, “I don't have to deal with my kids fighting.” They're not yelling at each other over toys. I mean, it's a beautiful thing. They simply enjoy being around each other for the pure love that they have. And I know I've talked to Noah about this before. We've said, “You know, if Josie was up walking around she’d be in your room, she'd be in your Legos.” And he says that that would be too hard. That would just be too hard. So I see even he appreciates the fact that you know, he has a sister that just looks at him lovingly, and gives him kisses. And that's all she wants from him.
Erica
I love getting this glimpse into your life. I do.
Jenny
Yeah.
Erica
We've talked a little bit about Josie and just this strength that she has. It's something that I think as parents, we can recognize intuitively. They can't communicate in ways that are obvious or even verbal. But I feel like we know, we can sense when they're fighting, when they're really given it their all...
Jenny
For sure.
Erica
Can you speak to me a little bit about Josie's strength? How it's conveyed, how she communicates it to you?
Jenny
Yeah. So I mean, the best way I can describe her strength is insane. It's unlike anything I've ever seen. I mean, I can't tell you the amount of times that we have been seriously afraid for her and her life with massive pulmonary bleeds or seizures that last for hours. And then she just pops out of it and watches Frozen like it's nothing. You know, she really doesn't let anything get her down. For me, I really see her strength and the ability that she has to bounce back from things. There's times where she's having a terrible day with seizures and then she takes a nap and she wakes up.
For me, I'd still be pissed about my terrible morning. Her, she's happy, she's smiling, she's giving kisses, she's spreading love. And so she doesn't, she doesn't hold a grudge. She doesn't let anything get her down. I mean, just recently, she was having a really rough seizure day and after she came out of a seizure, I asked her if she was struggling and she told me, “Uh-uh.” And just that strength, I don't think that girl would ever tell you she's having a bad day. I don't think she would ever complain about what she's going through. And I believe, I’ve seen it time and time again that she tries to let us know she's okay when things are going bad. She'll give you that little smile or just that look like, “I’m doing okay, I'm hanging in there, we're going to be okay.” And it breaks my heart because like I said, if it was me, 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 at 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’ve got to let them know I'm okay. I can do this. I'm okay.”
Erica
There's an unfortunate, I would say an unfortunate amount of difficult conversations that many of us complex-needs parents eventually have to confront regarding the process of making difficult decisions, especially when we sense that our child no longer has the strength to maybe carry on. And I think I remember a time when there were difficult conversations like this occurring for Josie, but she kept fighting. And she kept shining her bright light. And to this day, we've witnessed her continue to defy so many odds. Referring back to those times when Josie has been critically ill, we talked about this a little bit earlier, but what signs did you notice in that struggle? In her fight to live? What did you see shift in her when her spark returned?
Jenny
This is hard because I can honestly say that I've never seen her fight or her strength waiver. I mean, one of the most difficult hospital stays we ever had, she was paralyzed on a ventilator for weeks from coughing up blood, her lungs kept collapsing. We almost lost her several times. I mean my PTSD from that, in and of itself, seeing everyone rush in and back, her and her oxygen dropping for minutes I mean, she still fought like hell, even though she was on paralytic medication so she wouldn't move and she wouldn't cough she’d still fight.
Her eyes. I mean, I've never looked at Josie and said, “She's getting too tired, she can't keep fighting anymore.” And I've had people ask me, like, “how is she handling this?”. And I always explain that she just keeps fighting, that's all she knows. That's all she's done from her first day of life. And with my whole heart, I believe that the day when Josie leaves this earth, it's going to be something that she doesn't have control over. I mean, I cannot picture her letting go and being like I'm done.
I've had those conversations with her on really dark days, like, “if you're tired, you can go, I will understand.” But somehow, she seems to just have this ability to carry on and get back to her happy self. I mean, during that really bad hospital stay, eventually she got off the ventilator and we were home two days laterw.
Erica
Wow.
Jenny
Which, as you know, is incredible. So she just fights. I had a doctor tell me once that he doesn't know of any able-bodied adults that could live through the things that Josie has. And I've seen that time and time again, I don't know where her strength comes from. But that girl is not done fighting. That's just who she is. I can't picture her being tired and losing her fight. She's too stubborn.
Erica
We all need a little Josie as our spirit animal, honestly.
Jenny
Very true.
Erica
Much of society has no idea or is really able to fully grasp all that you do in your efforts of keeping your child alive and healthy on a daily basis, truly advocating for your child constantly. If there's one thing you'd want people to know most about your role as Josie’s Mom, what would it be?
Jenny
I would want people to know that I am the lucky one to have Josie as my daughter. I cannot tell you how many times I hear people say how lucky Josie is to have me as a mom, but in reality, she's given me far more than I could ever give her in return. I call her “my little slice of heaven.” And it is so true. Just to be in her presence, to feel her pure spirit, it's more than I could have ever asked for. I didn't know that I needed that in my life before I had her.
I would also want people to know that as rare as her condition may be, as different as our family might look, I really just want people to see us as a normal family. I mean, I think you know that level of sympathy and almost pity that people have for you and your situation. It doesn't come from a bad place, I think it comes from a place of not understanding or being able to relate. But as different as our lives are, that's just my daughter, I love her. I don't feel like I'm doing anything extraordinary on a daily basis. I'm just meeting her needs. We're just a regular, regular family. And that's what I really want people to see us as.
Erica
Even as a child, I sensed that pity from people. And it's this really awkward dance, right? So here you are rolling up with your family and someone sees you and then they feel awkward because they've been caught staring so they say something that they think will be helpful and really to maybe just break the ice that they were caught staring, but then you are left with this responsibility of comforting them in their awkwardness and in their inability to just be genuine about the situation. And it just becomes this really awkward dance. And it's almost like one more responsibility that we have to carry...
Jenny
I agree.
Erica
...us always navigating that conversation. And at the end of the day, making that person feel okay for you know, their stares or...
Jenny
Yeah.
Erica
...you know, and I don't think that will ever change.
Jenny
I never know how to approach that. I mean, I know Josie doesn't unfortunately go out and about, but I remember a time when you know we would go out of town for her doctor's appointments and would all go out to eat together. For us, we never got to do that - all four of us out to eat. And then people's comments, “Oh, she's so tired. I wish my kid could sleep like that.” ...you know, when she's awake, she's just not moving. And I never know how to approach it because if you say, “Actually, she has a rare type of seizure disorder and she's legally blind,” they feel terrible. But if you brush it off, then my son is looking at me like, “Mom, she's not sleeping.” It's so uncomfortable when I'm just like, just come up and tell me her shirt is cute. Or say hi to her like you would any other little kid. It is that simple. I don't go up to you and say, “Oh, my gosh, your hair is dark. Did you dye it?” You know? I don't point out differences. It's, I guess you don't realize it until you're in it. I can't tell you how many people awkwardly come to me and try to say something about Josie when she is so social, she loves interacting with people. I wish they would just get down and say, “Oh, you're so cute. I love your hair,” that's everything to me. Exactly that simple acknowledgement of her as a person is, it's all I want. That is all I look for.
Erica
You know, and I came to understand at a very young age that it comes from a good place. It comes from a well intentioned place. There is love there. There is, I think, the desire to help the parents feel included. But what they forget is they're overlooking the child.
Jenny
Yes.
Erica
And if that child's able to communicate or not, it happens even with kids who are able to communicate, we as adults do that interaction between the other adult rather than the child. And you're right, it boils down to communicating with them like you would anyone else. Because ultimately, they like that! They thrive on that. I know my little show-stopper sure does.
Jenny
Oh, yeah, they do.
Erica
Margot could care less.
Jenny
Princess Margot, she's like, “whatever.”
Erica
She's like, “I don't need your approval.” Caratacus is like, “You just shine my right here. I need it all.”
You know, it's an uncomfortable thing. And I don't think we're going to get anywhere immediate in that change. Because having an expectation of someone to do that differently is also saying, “live my life.” And that's just not possible. You'll never fully understand this until you live it.
Jenny
No, but that's the only way you can gain the perspective that we have. So I do see that it doesn't come from a bad place when someone tries to approach us. And I'm all for asking questions. Ask me questions about Josie! I had alady come up and say “ Oh, does she have CP?” That to me was groundbreaking, like, “Oh, you're actually a question. You're curious.” I would love to take the time to teach them!
Erica
That was so brave of her!
Jenny
Yeah!
Erica
She could have been so off, but she took it upon herself to say “I think I see something that I recognize and I want to ask about that.” It is so welcomed, honestly.
Jenny
And I don't think many people would realize that. That we would rather the questions coming from a good place, then, “I'm not going to look, I'm not going to stare, I'm going to turn the other way.”
Erica
Right…
Jenny
...because we noticed that just as much.
Erica
Exactly. Such good conversations, look at us!. (both laughing)
If there was one thing that you could share with other complex needs caregivers to make their lives just even one tiny bit easier, what would it be?
Jenny
Find your people! Find your support! Don't be afraid to ask for help. I mean, something I've learned with Josie, I've had to find my own voice. I've had to be able to say this is what I need, this is what my daughter needs. I wasn't that kind of person before, but I've learned that's what you have to do. I mean, I don't know how I could ever manage our situation without Jordan’s constant support, and the help from Josie’s nurses. And so I really think it's important that you find the people that you can lean on, who can learn your child's condition, and who cares along with you.
And I also think it's immensely important to find support groups of parents going through similar situations. It's very important for you to realize you're not alone in this and there are people who understand your fears, your grief, your daily struggles, on a deep level. And for me, that's been our MMPSI support group. I consider you some of my closest, truest friends, because when I go out in my community, I don't see parents like me. I don't see kids like Josie and so it's quite isolating. But when you can find those people that know, on a deep level, what you're going through, it's transforming. And so seek out those support groups, seek out the people that are going through those same things.
And also enjoy your child. It's scary, you're grieving, and it's horrifying. I'm still scared all the time. But when I look back to when Josie was little, I was so caught up in grief that I feel like I didn't fully soak her in as the sweet little baby that she was. And I wish I would have known that those were the easy days.
Erica
Yeah…
Jenny
...things were easy. I mean, I didn't know, I was wrapped up in grief, I couldn't look at other babies in the store and think that, that should be me. Soak in your child every day that you have them because they are a gift.
Erica
(Erica tearing up and sniffling) Sorry...
Jenny
...it's okay. It's okay.
You know, you don't realize it till you're on the other side of that grief. And that took me about a year of this 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 that. At the same time soak them in, these kids are a gift from above. Soak them in every day that you have them.
Erica
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 mine when we say: take in every moment and don't compare it to others. What we're living is incomprehensible in sad ways, but also in the most profoundly beautiful ways.
Can you name one thing that you would like to do or provide Josie if you had no limitations with money, destination, accommodation, no limitations.
Jenny
This may kind of sound funny, but if I can provide anything for Josie, it would simply be the ability to leave our home and get out and experience the world more. I mean, I don't have one specific thing that I would want for her to do, but I would love to see her go to preschool, go to a zoo, see a movie. I mean, she loves, she's the go-getter. She loves to see new places, new people. And I would love nothing more than to see her experience the world. I think that's been one of the hardest things is knowing she's so confined to our house because of her health and trying to still keep her entertained and give her new experiences that I just wish we didn't have that burden. I wish I could pack her up and go take her to the store and you know, let her pick out an outfit.
Erica
Yeah, I love that. Let her pick out an outfit.
Jenny
Oh, I wouldn't even want to know what it would be! Some expensive princess dress, for sure. But I just want her to have more typical childhood experiences.
Erica
Mm hmm.
Jenny
That's all I would want for her.
Erica
I agree. I agree. And, and to take her out into a society that maybe is a little more accommodating. Because my goodness…
Jenny
Yes!
Erica
...the whole idea of it overwhelms me so we don't. I think that is going to be my, my personal goal. If we ever get past this virus, I just want to do more things outside the home, if we're able to.
Jenny
Yeah, do it.
Erica
Final question. What have you learned from Josie?
Jenny
The biggest lesson I have learned from Josie is just truly how to live life. I mean, despite dealing with the unimaginable pain and suffering each day, she still finds a way to be happy. And every moment that she feels okay, she's in a good mood, and she's smiling and giving kisses, and spreading love to everyone around her. She's really taught me what's most important in life. And that's just to be appreciative of what you have. And enjoy each good moment that you are gifted. I mean, she doesn't care about her disabilities or the machines she's hooked to. She is simply grateful to be alive. She has taught me not to stress about the things I cannot change. And just to be kind to the people around me and be grateful to be here. I mean, I feel like if everybody could live life like her, the world would be a much much better place.
Erica
I agree. I absolutely agree. I would campaign for that.
Jenny, thank you so much. This has been so fun.
Jenny
Sure.
Erica
I really value everything that you shared with us.
Jenny
I want to say thank you! I feel honored that you asked me to do this. I'm so glad I can share a little bit about Josie and our family. And I was nervous to do it, I'm not going to lie, but I thought, “if this can connect with one person, if one person can hear this and say, ‘I get that, that makes sense,’ then it's worth it.” And that's part of Josie's purpose.
Erica
I can tell you right now, that happened for me multiple times while hearing your story. So I know it will happen for others.
Jenny
Good.
Erica
And that's the whole point of this is to feel that connection on the happy proud levels, but also in those deep cringy dark levels.
Jenny
Yeah, for sure.
Erica
In many ways, those make us feel more human because we realize we're normal in that.
Jenny
Definitely.
Erica
And so much of our experience is abnormal, or as the title of the show atypical. So to know that there is this demographic out there that shares this, is just so comforting. So thank you.
Jenny
Thank you. I appreciate it.
Erica
I know that this episode was a long one, so I'll keep the exit short. But Dang! ...maybe that makes me sound very redneck, and I apologize for those who are offended by that. Truly though, this episode personally hit home for me. So much of what Jenny said about Josie, it truly resonates with me and my feelings for my own children. I just love how she's able to put words to the essence of our children. To learn more and to follow her story, you can find our friend Josie Fernandez on Facebook, and I'll include a link to her profile in the show notes.
If you are one who has often felt the fear of what the future holds for children like ours, then be sure to tune in next week for the Afterthoughts Episode, where I'll release some outtakes from this conversation as we navigated some admittedly difficult content about the deep dark fears that every parent like us is forced to sit with.
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.
One way to help promote this podcast more widely, for those within our disabled and medically complex community, is by sharing it with as many people as possible. By simply taking a few minutes to subscribe, rate, and review this podcast; it will become more visible to those who are searching it out. (You can do so by following this link)
The beautiful soundscape behind this podcast is titled Rugla, it's performed by my favorite contemporary music collective, Amiina. The cover art for Atypical Truth was designed by Kendall Bell.
