Learning to let our children lead us in parenting a child
with epilepsy.

Show Notes:

A Mother’s Journey through Unexpected Illness and Loss

In this heartfelt conversation, Tonya Wollum sits down with Julia Pearce, a dedicated advocate and mother, to explore the challenges and triumphs of parenting a child with epilepsy. Discover the incredible resilience of a mother as she navigates complex medical systems and celebrates her child’s unique spirit. Learn valuable insights, find inspiration, and connect with a supportive community. Join us as we delve into the world of special needs parenting and uncover the power of love, hope, and determination.

Connect with Julia:

• Website: https://juliapearce.net/
• Instagram: https://www.instagram.com/runnamokk/
• Facebook: https://www.facebook.com/julia.pearce.754/
• LinkedIn: https://www.linkedin.com/in/julia-pearce-0b06b01b/

Purchase Julia’s book: https://amzn.to/3WmQuck

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Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

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Episode #102: Parenting a Child With Epilepsy: Dallin’s Story

Learning to let our children lead us in parenting a child
with epilepsy.

(Recorded April 10, 2024)

Full Transcript of Interview:

Tonya: Can you tell us about Dallin and um, maybe start from the beginning and let’s look, look at those really early years.

Julia: Oh, I love talking about him. So, thank you. Thank you for letting me start with that. So, Dallin is our son, and his experiences, his life started when he was just a little fun, little dude.

And I call him a dude cause he knew he was, he faced life, um, full on into the wind, he loved to just look and experience and go through, you know, Every toy in his room and then look at things with a calmness and then life changed right before he turned two. He had an unexpected, what they call the catastrophic illness.

And of course we didn’t know what that meant, but what happened is the week before he turned two years old, he started having, um, seizures and it started one day when he was home with his dad, I started a new job. So, I had no idea what was going on, but our marvelous little, almost two-year-old started having seizures.

And so, emergency response was called and they had no idea what was going on. My husband took our son to the doctor. They saw no reason for it. And so, they sent him home and said, this could have been one of those one-time occurrences, and then they came and got me from work and I said, what happened to you two?

And they said, you’ll never believe it. And I surely did not believe it. Well, what happened next was he woke up the next day and could not walk and could not speak any longer. He could not get that cereal to his mouth. And we called the doctor and they said, get to the emergency room. What happened then is he was in the hospital for the next nine days.

He continued to have multiple dozens and then hundreds of seizures that until they got controlled, caused just massive chaos in a little teeny tiny boy. None of the doctors could figure out what was going on. And that was the start of a change in our life, and how we began to figure out how really cool this little dude was because the doctors did not think he was going to survive this.

Again, they called it a catastrophic illness. And we were these young, knew nothing parents. We had gone from, sure, let’s put Cheerios out and try and get a kid to eat broccoli. And then we ended up in the hospital. This illness took all of his development. It took the ability for him to walk or talk or eat or sit up or even hold his head up and they had no idea what was going on.

It was nothing they could find a reason for. And yet he got up every time after a doctor would say, we don’t think he’s going to regain or start again or do something. And our son, because these doctors were talking around his little crib. And somehow, he would look and say, are you sure? And then he would get up the next day.

And one time specifically, he had what they called a taxia, which was, um, they describe it as just loss of, um, Neurological control and movement, and he could no longer walk again, holding up his head. Wasn’t something he could do any longer. He had lost all of those skills. He got up the next day, pulled himself up to the side of his crib, and climbed out.

He wasn’t in a crib any longer at home. I called the nurse. She got an IV pole, and we were off, not crawling again, but running. The doctor soon heard. And they got him a helmet because he was still having so many seizures. And that was the beginning of us learning this whole new world. What his life then told us about him was that he was going to do some really amazing hard things in this life, and we didn’t know what that was. Once we figured out that he was going to survive, he did do that, and then they sent us home, and we began again with this powerful, teeny tiny, little marvelous young boy who started to show us like, are you coming? Cause I’m going.

And that’s how he continued to tell us who he was going to be. He did regain the ability to walk. He did learn how to do many things. He didn’t learn how to speak with a vocal voice, but he did learn how to communicate using a lot of, um, systems for communication, including, um, sign language and a lot of things.

I was going to ask if he did sign. Yeah.

He did. It was his first mode or way of communication, even though he could not use all of his little muscles. They’re intrinsic muscles in his hands. It was still his choice of what he chose to use as communication. We did therapy from then on out. Met very many doctors as his disabilities started to increase and pile on one another.

He never cared. It was like, so we’re going to play. We’re going to go. We’re going to choose this next thing. I’m going, somebody’s got to take me, and let’s do this. He was an incredible soul.

I talk a lot about this, that a lot of our kids, you see those personalities so early.

Dallin showed us from his very first moments that, hey, I am here.

Let’s go. Life is grand. And then when he survived his illness. Hey, let’s go. I am here. Life is grand. It looked very different and yet we were there for it and we needed to learn a lot of things and we did.

So, these are massive seizures that he’s having to have that many. One after the other and, um, you know, as young parents, did the doctors explain to you what this was other than saying he can’t do this and that he’s already proven wrong.

But you know, how did you even get to the point of understanding what they’re talking about and what that really meant?

So, in the hospital, it was pure survival for real. It was pure survival. They placed so many IVs in him that. Veins collapsed, and I’m sharing that because I think you’re with an audience that can understand those words.

Uh, so, we had so many medical interventions and so many tests. They did everything to try and find, we were in survival mode. And so, when a doctor or a specialist or a team would walk in. I was taking notes after notes, tracking seizures and what test is next. And is it with or without what they call contrast on an MRI, or are we going to talk to this group next?

And then they sent us home. It is, they get you out as quickly as possible. You do not want to be in the hospital for very long. And they did that. That was 31 years ago. We survived the hospital with a lot of. Tender care from the people around us, including really incredible medical staff, kind people who tried to bring in toys and ways to divert him from the sheer chaos he was in.

And then we went home and we’re connected with early intervention, which is birth to three. I had no idea what these things were. And so, we learned as quickly as we could. I learned as quickly as we could, taught Dallin how to walk again and how to eat, and we were happy that his hands could come together again, and it all was very perplexing, and we were grateful.

So, you had an early intervention. Was he on medication that could control the seizures better?

So, for periods of time, seizures are the beast of life, in my opinion, so, he can, or he could be on medication and then he would break through the medication and we would see more seizures and you would change the, The level of the medication, or we would add another one or take one off.

And that was the dance we did for his lifetime. And that’s it. The seizures were his nemesis forever. They usually are with people. His seizures were, um, intractable, meaning they could not treat all of the levels of his seizures. So, we treated as much as we could, along with a lot of studies to see if there were other interventions that could have been helpful.

We looked at all of it for his level. It was called intractable, again, intractable epilepsy.

So, as young parents. I mean, you’ve gone through the trauma really of the initial diagnosis and, and all of this. Now you have some supports in your life. You’re going on, you know, several years have passed now. How did you cope with that uncertainty of the diagnosis and how the long-term impact that was going to be on him?

Again, when he was so little. Um, in those, those three to four-year-old, we were trying to just keep on top of the, the medication and when to give it and figure out what he could eat and how we were going to get him to eat. Food was really kind of tricky again after he couldn’t swallow. We were trying to do those things again.

And then when he got into early elementary years, so, we got through preschool, preschool was a lot of. Learning time of, um, what is this? Why am I sending him on a school bus? You gotta be kidding me. I’m going to do this. And he loved it. He was this insatiable learner of life and let me go and do this and play in water and sand and mud and be around kids who make me laugh.

I watched him do these things occasionally, and it was joy for him and very hard. He needed help to hold onto the crayon and open his juice and sometimes get that cookie to his mouth, but it was a cookie, so, sure, I’m going to do this. And so, then we learned the system of education through going to trainings.

And I would talk to my husband and say, you’re never going to believe there’s this law. And it was the Individuals with Disabilities Education Act. And he said, there’s a law so kids can go to school? And I said, it’s the coolest thing ever. And then we kept going. And I say we, because it was always, I learned and then shared with my husband and he, we both became open advocates, and let’s do this together for our son.

You’ve mentioned, um, when you provided your information about your story, that Dallin faced a second illness later in life. Now, was that in his early teen years? Is that correct?

Yeah, he was about 13 or 14 years old when a secondary, what they called a muscle wasting disorder.

We never did find a reason for that to happen. He started losing strength and muscle and ability to first use his leg muscles. And then it went into his hands and then it went into all of his internal muscles. And that happened when he was a young teenager. So, then we continued to add supports for Um, people to help him walk So, he would hold on to somebody’s arm and then he would help push somebody else’s wheelchair because he was not going to sit down in that wheelchair.

He helped people. He did not like to use a wheelchair. There was no way we were going to get him to understand how to use a walker. He also had an intellectual disability along with the medical needs that were happening that did start. When he was a young teenager and progressed through from about 13 or 14 years old for the rest of his life.

So, this is just really unusual that both, there’s not anything you can point to say, this is why either of these situations happened.

I know. And when he was in the doctor’s offices, we had one marvelous doctor who would say, Oh, he’s such an enigma and say it with the tenderness of like an uncle.

Dallin also had a blood disorder. He developed osteoporosis. He had that intellectual disability and used many things for communication. He was noisy. Like he could holler at you, but he did not have expressive language that was spoken language. Um, but he did have communication systems that he used very effectively.

He also had, um, a few other things because why not just have a list that was this long. And they never found a reason throughout all of his experiences that could have. Told us why it all started. And at one point we said we were done looking. There was no genetics, there was no markers. Every five years or so we would go back because genetics is a continuing science.

And then, um, he actually told us he was done with all of that. Malarkey. He told us he was finished with it one time, and I said, That’s fine, we’re done for today. And he stopped me and said, I’m finished. And we said, Okay, we gotcha. And we stopped with all of the testing. And he was a young adult. You get to say when you’re done. You get to tell your mom, I’m out. I’m out of here. That’s what he did.

Well and at that point, was it important to him to understand the reason behind it? Maybe not, maybe not, not worth going through the testing process every time and all the, he had enough meetings that he was having to have already.

It wasn’t important for him and it low, no longer was important for us. It was Dallin. Dallin is who we followed and who we continue to be right in sync with. If we could follow that rhythm, joy.

So, I want to switch gears a little bit. You’ve, you’ve referenced a couple of times, that Dallin is not with us now. Did you have time with him to talk about that before he passed?

Yeah, he did not have that level of understanding. That we could talk about it, but he did know that he was understanding that something was changing. And it’s phenomenal when we got out of his way, which we did and needed to do a lot of. Just get out of his way. It was not about us. That’s a learning curve for, I think, a lot of families with and without kids who have disabilities.

You got to get out of their way. When we got out of his way and let him lead us, when he told me that day, I’m finished. And he signed, finished. It was so distinct. Stopped, looked me in the eyes and said, Mom, finished. It’s like, yes. We canceled everything for six to nine months.

Wow.

And like every test, every lab, every appointment and chill, stop, played a ton. We didn’t stop playing cause that’s the pulse of our lives. So, he knew something was changing. He did finally um, stop doing some of his loved activities, such as mountain climbing and snow skiing and horseback riding. These are things he had done since he was probably four to six years old. He did know that he was getting weaker.

We didn’t have the opportunity to speak with him with a team of, let’s say we were with palliative care, which is a group of individuals that you get to. And I say, get to on purpose, if you have somebody who needs extensive medical support during, um, the type of illness that Dallin had. It was a degenerative illness.

Dallin didn’t come to those appointments, but we sure watched his body cues. When he was tired, we went to school late, or they called me and said, he’s just told us he’s done for the day. And which meant he was finished and got his backpack and said, call mom. Right? He like, he was very exact or they just watched him and said, he’s not looking great.

We didn’t have the opportunity to do those for those extensive conversations, but we did extensively and consistently watch for signs of fatigue and his body changing and the large muscles getting weaker, which means we did eventually get him a wheelchair. He did learn how to use it for a short period of time.

Did mostly help other people, including us at one point. It’s like, I got to push somebody. So, you’re it. Um, that was his muscle memory. That was his go-to in life. That’s how he worked in the world as he did things and served and helped other people as his joy of the world rotated. That’s how he did it. We watched him.

Such a cool kid. I love hearing about him.

So, cool.

And I’ve seen pictures that you’ve posted on Instagram about him. So, I’m picturing him as you’re describing his personality with it.

He’s so cool. I do want to say he was also tough as nails and as determined as a hornet when things were hard and he was confused and it would, like, he was the toughest, gnarliest dude. Which is why he was so cool. He was like, roar. And then, hey, how are you? In the same blink of an eye.

You had those early years. You had all the support. He was in school. You had the support with a huge IEP team. You had the medical team that was working with you. As you approached the end, did you have support?

And what type of support did you have for yourself? You had the palliative care, but did you have support? And anyone that you would recommend that another parent in your shoes needs to make sure that they have them aligned with them as they’re going into that last phase.

Part of what we found and what I found is not only people for and with Dallin, but for and with us. So, I use those, like, what did I need with me? It was my friends who I could say, this is so bizarre. And sometimes it was people who I had just met. Sometimes it was people who I had met when our son was very young. And I was trying to figure out these service systems, our systems for people with intellectual developmental disabilities, or our mental health system, or the people who could say, I don’t know what you’re going through, but wow.

The people who could, um, withstand it and not everybody could at his end of life. Uh, we did have services from our state agency for people with intellectual disabilities for a period of time. We were on the waiting list with that state agency as well. It’s how things work in our state. And yet, um, I wanted to put Dallin in bubble wrap and just say, he’s mine.

I’m going to stay here. I’m going to look at you. And he was like, get out. You got to go. He really would. He would lead, guide you out of the room. And yet we needed to watch for an increase of all of his medical needs. So, we had supports like a closed caption camera, and we had two people that would come and make it so he didn’t have to be around me 24, seven, cause he was like, mom, I’m going. You gotta, you gotta go somewhere.

He really would make me leave the house and somebody else would come for maybe one or two hours a day at the, the last few months of his life. And so, I would, and maybe go around the corner while somebody was in the house in case the medical needs changed, but he was like, please.

We’ve talked some of the season about self-care and how it’s not a spa day or anything like that. Sometimes it’s. In your case, just going around the corner, maybe sitting in the car or standing on the corner. Um, it might be taking a short walk, but, um, but I think it is important and he was willing to give you that time too, that, that, that you needed to get out of the house, um, whether you agreed with him or not, it probably did give you a better perspective coming back in again.

He, he was so powerful. He taught so much by his. Pureness and he was a stinker. I’d be like, oh my gosh. And he did, he, he gave us, and he also caused like trembling of, I’m not going to survive this, we did.

Well, I’d like to transition, um, to the, um, the advice time of our interview. I’ve. This season, I’ve been having each of my guests close by giving some advice to the listeners, um, uh, related to the topic that we’re talking about.

And I have three statements that I’m going to read to you and have you repeat and answer the end of it that stays open, however you want to. There’s not a right or wrong here. The first one I’m going to give you is, the hardest thing about advocating for my child with special needs was…

The hardest part about advocating for my child with special needs was the systems we had to work through.

And when I say that, I mean, Dallin was not the hard part. Figuring out the ins and the outs and the right door and the right wording was where the hard parts came. I could learn who to talk to and if I didn’t say the right word, they would say wrong door. And then I would go back and I would say to a friend, they told me it was wrong and they would say, did you say this word?

And I would go back. That was what the hardest part was for me is if you did not find the right word and the right door, the barriers were massive. So, I found the right words and I found my right connections and my right friends who became mentors and who became advocates with me. And. That’s how it became less hard.

All right. Second one. One thing that surprised me about my child’s resilience was…

One thing that surprised me about my child’s resilience was how natural it came to him. It was a part of his essence. So, I mentioned the time that the doctors were around his crib and had thought he’ll never walk again.

And the next day he did. It was natural for him to be. Do something so hard and get up and start again. He did that for his lifetime. One time he was sick with pneumonia for four months. And I thought, okay, today, and today, and today. And he was home for those four months, so, his oxygen was just at that level.

The fatigue was debilitating. He would wake up, try and eat, And go lay on the couch and we would pull the sofa bed out and he would watch a movie that made him grin or chuckle or stay awake for a little bit longer. He did that for four months, time and time again, nothing stopped him until he decided, I think I’m tired.

It was the same thing, how natural, he just got up and said, Today, I am here, let’s go, how are we going to play alongside every hard thing? And resilience means you’ve done something hard and you get up. And for him, it meant, I’m going to find joy.

I still can’t get over at age two that not even 24 hours, he’s told he’s not going to do this.

And he’s, they’ve got to find a helmet to keep him safe now because not only can he do it, but he’s going to go not walking, but climbing over the top of the crib. All right. So, the last one that I have for this section is if I could tell parents who have a child with a degenerative illness, one thing it would be…

If I could tell parents who have a child with a degenerative illness, it would be to be in the moment. Again, everything I have learned about this was being alongside Dallin. And when I saw this most powerfully is when he was skiing on a mountain. And he went from toe clip skiing, which meant they really did put a clip on his toes of his skis, when he was four and five.

To flying down the mountain in tuck with the instructors flying out him. I was never invited on the mountain with him. He would be, I don’t think so. You are not invited to, at the end of his skiing experience, he was in a bi-ski, which means he was sitting and had outriggers with somebody pulling him along.

And he went down the mountain one last time, flew down the mountain on a black diamond, which means it was a pretty big hill. One time he signed finished to the instructors. They knew him very well. We had been on the mountain for a dozen years. He signed finished. And they listened.

Julia, that, that’s been fantastic advice that you shared with us. Are there any projects that you’d like to share with our audience, and tell us how they can get in touch with you too, if they want to follow up with any questions for you.

So, I can be found on social media, I’m on Facebook and Instagram. I’m also on LinkedIn. I have a website at juliapearce.net, that’s P E A R C E.

I do have some things coming up. I have my book is on my website. The book is The Boy Who Became More Than We Could Imagine. I do have a second one coming. People have asked, so, what does it feel like after a child is no longer here? And I said, wow, yeah, that one is coming. It actually was planned at the same time.

And then I have another project that I have coming up for parents, family members, siblings, after somebody passes away. Those are the things I have coming.

Well Julia, thank, thank you for sharing your story with us today and, um, being willing to be so, so open and honest with me.

It was a pleasure. Thank you so much.