Love Needs No Words

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



 

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Love needs no words.

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


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


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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 t