This is the Truth Network. Welcome to Hope in the Morning. turning tragedies and tears into testimonies of hope. Welcome to Hope in the Morning. I am your host, Emily Curtis, and this month is all about kids.
And my guest today is the mother of two very special kids, Hazel and Russell. They are brave, joyful kids and their life is leaving a lasting impression. Julia, thank you for joining us today on Hope in the Morning. Hi, thanks for having me. You have a very neat testimony.
First of all, you have two beautiful children, and they really do just radiate joy in all of your pictures that I've ever seen of them. They just seem like such happy kids. But your journey has been, you know. a hard one. I mean You have faced a hard path of motherhood.
And hard health. Trials in amongst those. Can you kind of walk us through starting with maybe your pregnancy with Hazel? Yeah, um Sure, I don't know how in-depth you want me to get, but yeah, my husband and I had been married for five years and we got pregnant with Hazel, and everything was perfect. Like, I was like the mom everybody hated because I was just glowing when I was pregnant, and I loved being pregnant.
We had Hazel, and she was born, and she was normal. Her APCAR scores were perfect. And we had everything that we ever wanted when that was to be parents. We brought Hazel home from the hospital, and overnight she started acting a little bit funny. But we had been told, you know, babies, they cry, right?
Everybody knows babies cry.
So we didn't really assume anything out of the Ordinary, would have been going on with her. And when we woke up in the morning, we both just kind of had this like rushed feeling in our stomachs, like we need to take her to the doctor. The only thing that was abnormal the night before when we got released from the hospital was her bilirubin was slightly elevated. But that, as you know, if you're a mom, that's a normal thing for babies.
So we brought her back to the hospital to get her bilirubin rechecked, or so. That's why we thought we were bringing her. And the doctor took one look at her and she stopped breathing. The doctor grabbed her out of my arms. and just picture any er movie that you've ever seen in an instant my life frozen in time.
Mm. As a movie seemed to be like going by, which is my baby being taken away, running down the hallway. And I remember just being so frozen in time because my brain was so confused. I had a perfect normal baby. And then in another split second blink of an eye, I didn't.
And the nurses kind of like grabbed my hand. They're like, follow us, follow us this way. And we walked into a room. And there were, you know, in an instant, a number of people working to save Hazel's life. We went from one's highest high.
This is our firstborn, brand new baby, like the love you've never imagined, now imagined in flesh. To the lowest to low, anyone could ever imagine: oh my goodness, the Lord's going to take her away in a matter of seconds. And to say our entrance into parenthood was abrupt would be an understatement. Yeah. The next month, Hazel spent in the NICU and we spent the entire time thinking she's not going to survive.
Is she going to wake up enough to feed? And she just lay there. Flat. For the majority of the time, she had been having hundreds and hundreds of seizures. And the doctors had to give her so much seizure medication to get them to stop that they said if they had given a grown adult that much medication, they would be asleep for a whole week.
Wow. And she was a brand new baby.
So, um. When You know, when she started going through all this testing, because we're like, okay, she had seizures, she had apnea, she stopped breathing, like, but why? And my mom gut always just told me like she's like something happened. Like she was born and she was. Normal.
Like I saw her, I was with her, she lashed right away. And I think our story is one of so many. And I don't bring this up very often, but. We didn't find out for four years after Hazel was born that my mom gut was wrong. And Hazel was actually born with a very rare genetic condition.
But the thing is about the condition is they're born normal. And then when their body starts metabolizing. The way that it metabolizes, it sets the body into shock. And she started having hundreds and hundreds of seizures and stopped breathing. And so she was born normal.
And the disorder onset at about day two and a half. Tree of life. Wow. And I think for the listeners, it's important to know, you said that she was born with a rare genetic disorder. It's extremely rare what she has.
I was reading the other night that approximately one in 76,000 births Has this disorder, or approximately 500 known people. Can you talk to us a little bit about what the disorder is and what? Kind of what What thoughts and feelings went through your mind when you finally got a diagnosis? Yeah, so the disorder is called NKH. It stands for non-ketotic hyperglycidemia.
But the specific type of disorder does really matter within the family of NKH.
So you kind of have like big umbrella metabolic disorder, then you go down a little bit more NKH, and then you go down farther and you find that she has the LIAS variant form of NKH. I say that because the type of NKH that she has is what makes it even more rare. NKH in general is very rare, like 400 to 500 cases alive today. Her specific type only ever have like six to eight documented and studied cases of her type in the world ever. Most of these kids, they die within 10 days.
If they survive that. The average lifespan that's documented is three to five years.
However, there are kids with NKH who live longer. are specific type that um Both of our kids have, though there's only two kids who've lived longer than Hazel. Wow. How old is Hazel right now?
So Hazel's eight. She will turn nine in July. And we haven't gotten to Russell's part of the story yet, but he's turned six soon. Yeah, we're going to get to Russell's part in the next part of the radio program. But have you connected with some of those other parents that have NKH children?
Yeah. What is that like to have that community, especially for something that's so rare genetically? What kind of lifeline is that for you as a parent? You know, I feel like That's a really hard question for me to answer. Because I want to say it is this big lifeline for me.
But honestly, my faith is what grounds me. And that's my biggest lifeline. And I think that. The biggest lie of the enemy is that I'm the only one, and we're the only ones who have a kid who's born to essentially die because it's a fatal disorder. The truth is that we're not the only ones.
But because our kids type is so rare. I think I've only ever... Met virtually two other kids who had this same type. And one of which I got to FaceTime with his mom and him. And it was so exciting.
Like at the time, the connection was. It just felt Like you were saying, like it felt like, wow, I'm not the only one. And I thought I'd be walking with her through it for a really long time. And her son died at eight months old, really unexpected. And so.
I think that the hard part about NKH is the journeys are so different. And You know I It's just really hard because there's like no comparison, they're all so different.
Some diet at 10 days, some are still alive by the age of our kids, and so. I more have leaned honestly into my faith than the community, but it is, it does help knowing that we're not the only ones. Yeah. Did you have a strong faith and just a joyful outlook on life before Hazel was born? Yeah, I think some of my best friends always tell me, they're like, Julia, you would make lemonade out of any kind of lemon anytime.
And I do think that some of that is a natural gifting of mine, like the way that God created me. But I was actually born and raised Mormon, and I met Jesus. I met Jesus in a profound way when I was 23 years old and was baptized, and my life changed drastically overnight. And so I have always been a very positive, like look at the bright side of things person. But I really feel like my super Natural gifting, like my spiritual gift is faith, just knowing that.
I'm not in control. And really that. was birthed when I was saved at 23. What a neat gift that God gave you because, for you to say that He gave you almost like this peace, this faith that gives you this peace to rest in the fact that you're not in control. Knowing the trials that he was going to allow in your life to refine you.
I mean, we fully believe here on Hope in the Morning that the Lord uses our suffering for our good ultimately. And again, it doesn't make the pain of it less. I mean, that's why we talk about it here because we want to, as believers, to be able to talk openly and not pretend like just because we're Christians, it doesn't hurt. Or there's no way to minister to one another in a deep and ongoing way. But what a testament to how well the Lord knows you.
And he knows the future and what he's going to put before you because I have followed you now. I don't know, maybe close to a year. And you really do just like resonate this joyfulness, and you see that mirrored in your children. And I think, what a beautiful gift. and not only do you see that in your own children but it has given you this This ministry that you have decided, you know what, I want to help other families with children that have disabilities.
I want children to see the children really see the children that have disabilities. And we're going to be talking about that as well. Can you walk us through a little bit of how NKH affects Hazel day to day? Like, what does her life look like day to day? Yeah, so Hazel is nonverbal and she can walk, but she's a little bit stumbly on her feet.
She also has something called CVI, so it's like a visual. Interruption where her brain just can't interpret what her vision is seeing. And so that makes her walking a little bit difficult. But she functions honestly like a one-year-old. Like her brain is very simple and happy.
She likes water and balloons.
So many balloons. Like we blow up balloons all day long. And if she could swim in her little swimming pool every day and drive her golf cart. She would. Oh, yeah.
I love that not only on your page, but just even in your stories, the way that you talk about your children, like you can just tell how much joy they bring you. And even, you know, you're talking about how Hazel is nonverbal, but I've seen you post some videos where she can communicate some of the things that she wants or enjoys, just like you can tell that she loves balloons and she loves water. And what would you say are like some of the ways that she does communicate with you?
So she actually does know a few words. She can say hi and she says, okay. And she says those a lot, but she does a lot of what we call HSL, Hazel's made up sign language. And she goes, she wants water. And she can communicate with sign language if she needs to go to the bathroom.
you know, and for the most part, she'll let you know. Like, she'll take your hand and she will bring you where she wants to go with what she wants to do. I love that. I mean, you can still see it. And that's what you're trying to kind of.
Teach other kids is that these kids they have their own personalities, they're their own little people. And so, being able to teach kids that these kids also have autonomy and to see them as individuals is a beautiful thing. And when we get when we come back from the break, we're going to talk about not only sweet little Hazel's life, but Russell. You have a son as well. And not only do you face challenges with Russell as well, but there's a pretty neat aspect of Russell's life.
And Russell's life essentially saved yours.
So you're not going to want to miss us when we come back. Join us again in a moment on Hope and Hope. Hope in the Morning allows you to lean into the suffering of others and helps equip you to purposefully mourn with and meaningfully minister to those suffering in your midst. May these testimonies cause you to see our God with fresh and thankful eyes. and may you seek to be His hands and feet to every wearying heart.
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To learn more, visit us at hopinthemorning.org. Welcome back to Hope in the Morning. I am Emily Curtis, and I am joined today with Julia. She is the mother of two precious children, Hazel and Russell. And they both are affected by NKH, which is a very rare genetic disease.
And this is something that not only Julia, do you You're very honest about the hardships about it, but you still have all this joy. You love these children, you cherish these children, and it's so. It's so obvious to see the joy that the Lord has given you through both of them. And one of the things that is so incredible about your story with Russell, you mentioned that it took four years. for Hazel to receive a diagnosis.
And by that time, You also had a son, right?
So can you walk us through now your pregnancy with Russell? Yeah, so we had been dismissed from children's genetics with Hazel. They said, you know, we can't find a genetic disorder for what she has going on, and she just kind of was left undiagnosed. My husband and I decided to have another baby and we got pregnant with Russell. And I had been having some random symptoms for the last year that I had been seeing from a doctor.
I think four times prior to going to my doctor for being pregnant with Russell. And at my very first, Appointment. being pregnant with Russell. The doctors examined me and they were like, oh, I think you have a polyp. And that turns into my first ultrasound with Russell, which turns into a cancer diagnosis.
Mm. What was that moment like for you? I mean, you've talked before already about how you hold. Kind of hold joy and sorrow, even as a mom, because you know that this diagnosis that your kids have is very life-limiting, and yet you cherish these children. But I can't.
I just can't fathom what you must have been feeling holding new life in your womb. and this new cancer diagnosis, what were your thoughts and your feelings? I don't really remember. I mean, I remember the moment. You know, you don't get a call from a doctor and have them tell you that you have cancer, and the oncologist is going to be calling you and forget that moment.
And I never forget where I was sitting in the house and the brown carpet. My husband and my phone was plugged in because my phone was dying. Um I don't think I felt anything, I just wept. Mm-hmm. And I think that That's the thing about joy and suffering.
Is that we think, oh, we can just always hold them both. And I think we can have them both, but sometimes it's a time for suffering and sadness and sorrow. and we live in a broken fallen world. And that was one of those moments. to see the tears in my husband's eyes.
He couldn't even stay in the room immediately after our diagnosis. He looked at me and he was like, I think I need to go for a drive. Yeah. I think Looking back, what I see is my husband. You know, I imagine being him and having a child impacted by severe disability.
A baby in the womb and a wife who he thinks is going to die. Mm-hmm. I never once feared my life. I just was like, how are we going to get? From A, B, C to D.
And we're just going to do this. And I think because of that, my experience walking through my cancer story. which turned into multiple surgeries while pregnant. and chemotherapy while pregnant and losing all my hair while pregnant. I had such a reason to fight.
You know, you see older people who stay alive. for days because they're waiting for someone left to come and say goodbye to them. And it's like when you have that reason to fight, the grit inside of you, I mean, the Holy Spirit, you know, it's like you can't stop it. And I. I mean, it was a really hard season.
But when I look back. It was easier because I had Russell with me. Mm. Did your doctors come alongside you in that fight to support both Russell and you at that time?
So, the first questions out of my doctor's mouth were: you know, are you sure you want to keep this baby? The doctors would have loved for us to just terminate Russell because then I most likely wouldn't have had to go through chemo. They could have just cut everything out. But our goal was to protect our baby more than even my life. And so they were supportive eventually.
But I could see in the back of their minds that it would have been easier to have one patient rather than two. And that was definitely an option they presented. Yeah, I mean you had to advocate for Russell. Very early on, you know, while he was still just in your womb, how far along were you when they found the cancer? Oh, I I was like six or seven weeks pregnant.
Okay. Very, very, very early. Like earlier, you would normally wouldn't have an ultrasound that early, you know, super, super early. I just found out I was pregnant and made my first appointment. Maybe it was nine weeks.
I don't know. Very, very, very early. Yeah. And you mentioned that, you know, when you guys got that diagnosis, that here your husband is looking at the prospect of a child in the womb, a special needs child and a wife whose future is unknown. But at that point, too, you guys still didn't know what the diagnosis was for Hazel.
And you certainly weren't thinking that you were going to get that diagnosis for Russell as well. What did that look like as far as like when you finished treatment, when you had Russell that season? Yeah, so what was miraculous is we delivered Russell at 35 weeks via C-section, and then they rolled him off into postpartum and did a radical hysterectomy on me. Praise God, I am cancer-free. And immediately when I woke up from that surgery, because I got to meet Russell and then they, you know, put me to sleep immediately and did the surgery.
When I first woke up, I was like, you know, I was like asking them for Russell. And when they told me that he was in the regular postpartum room, I was just like over the moon because at 35 weeks, it's kind of a hit or miss if they're going to need supports. And to say that I had NICU trauma is an understatement because the last thing I wanted was to have another NICU baby. It was so traumatic for me. And so they rolled me in on the bed to wrestle, and he was just sitting there feeding out of a bottle, like doing normal baby stuff, which I had never known.
And um Everything was perfect. It was like God had blessed us so much, so intensely. And the hands down, the hardest part of our story. was sitting in that hospital bed holding Russell. And he was two days old.
And I looked at him and his lips turned blue. And I knew. I knew what it meant. And I didn't want to tell anybody because not only did I not want to be separated from my baby. But I knew that it meant.
whatever Hazel had, he had. and I no longer had a womb.
So my idol. My ultimate hope of having a kid who would grow up, and I would get to teach all the things that I know how to do to grow up and out of the house. That was gone. Mm. And that is a part of our story, I feel like, where the suffering is like, there's, you know, it's like an onion to me, suffering, it's like layers.
That hit the core. Because you know, usually when something happens. It's like you can kind of make it up, like, okay, well, that was God's will, and then we'll provide later. And this was like, no. You will not have a biological.
Typically developing child. And that was really, really, really hard. Was it almost like instead of being able to look to the future and say things are going to get better? Did part of you almost feel like I'm looking to the future and things are going to get worse? Yeah.
And at that point. My husband is amazing. But at that point he checked out for a season. And I Mentally, I had a really hard time after Hazel, just struggling with postpartum and all of that. And my husband really struggled after Russell.
When Hazel was in the NICU, we went to the NICU every day together. We spent the whole time there. And when Russell, it was different because we had Hazel at home. And it was in our first rodeo. And Russell was in the NICU almost a month as well.
And I was there every day by his side. By myself. And I don't share that part to say, oh, my husband did anything wrong. But to say It was so hard for both of us in such a different way. I think talking about that is an important thing.
And I mean, just like I was talking to you when we were off air, those are the kinds of conversations that we want to have here on Hope in the Morning as believers. Like, we want people in the church to understand. What does grief actually look like? And things like diagnosis for your children, especially fatal ones. They really impact a marriage.
It can make or break a marriage. And same with when you have the death of a child, many marriages don't survive that. And again, A Christian marriage is not fully immune to that. You know, we may have some tools to help us hold together. But the sorrow that our hearts are carrying in in our flesh you know this this side of heaven It's not a lighter load.
Yeah, yeah. I think that you talking about what your husband faced and how he handled it honestly is probably going to help a lot of people. they hear this because There's not one exact right way to grieve. Even as believers, and we need to make room for that in the church, we need to be able to. Minister to people.
What were some ways that, especially once you found out that Russell also had this in the couple of minutes that we have left here on the radio, what were some ways that your church stepped in and helped you? Were you a believer at this point? Were you already past 23?
Okay. So, what were some ways that the church helped in and helped you? Oh, so many ways. Providing meals. When I was going through cancer, a couple of times they had us come up in front of the church and they prayed over us, and that honestly made us feel so loved.
I think for me, sharing my story has been such a source of healing.
So, giving us that space within the church body to just share honestly about what was going on and to weep with them, even after we got the diagnosis for both of our kids, and just showing up in. in humanity with us, I think, was a big deal. Yeah, one of our most recent episodes in May actually talks about what does it look like to mourn with those who mourn? Because that's a hard thing in the American church. And we talk about it often here because we're always like either in a hurry.
or we're just not willing to get uncomfortable. Yeah. We want to be Christ-like. Like we want to grow that here at Hope in the Morning to actually step in to people's suffering, to not minimize it, to not rush them through it. And when we, when we come back from this break and we're just doing the podcast portion, we're going to talk about how the Lord has taken the hardest season of your life, this incredibly difficult diagnosis for both of your children, and he's set your mind to a mission.
And it's such an amazing thing that God has put on your heart to do this and to honor your children along with other children.
So, going forward, so here are you. You bring Russell home after a month in the NICU and You still didn't have like a full-on diagnosis at that point, right? They didn't know, they knew they had the same thing likely. But they didn't know what that was. And how did you finally get a diagnosis for your kids?
Yeah, so systemat or Symptom-wise, we knew it was the same because the onset was exactly the same. But it took us about a year after Russell was born to get the diagnosis. And they did like a whole genetic panel on all of us. And so they actually took skin from Russell. And then I think my husband and I and Hazel did like a cheek swab and they tested the DNA to then find that I have two variants on the LAS gene, my husband has them.
Er, I have one. My husband has one. And both kids got both.
Well, so it's a 25% chance that a child will inherit that disorder.
Okay. So when you guys got the diagnosis finally, was that... Was there any relief that came with finally getting a diagnosis, or did it feel even heavier once you found out what the diagnosis was? No, there was definite relief. I think people hear our story and they see the diagnosis and they're like, oh my gosh, that's awful.
Like, worst nightmare. I just have a peace about it. I feel like not knowing and feeling like, did we do something? Did something happen after birth? Like, did she have a stroke?
Like with Hazel. That was really hard. Um and so I feel like I personally got a lot of peace after the diagnosis, and so did my husband. Before we move on to talking about kind of the The good that we can see here with the mission that you have. Can we talk a little bit about?
Just, I mean, especially to help other parents that are in similar situations with their children that have some sort of life-limiting diagnosis for their kids. What, like, how do you balance? Cherishing your children and living each moment to the fullest with your kids and soaking that all up. While still giving yourself space to grieve when you need it. kind of living in that dichotomy of Enjoying your children now, but also there is that state of anticipatory grief.
And for those that don't know what anticipatory grief is, maybe you can fill us in a little bit on what that is. Yeah, I It's such a hard world to live in. I think a lot of women and moms in my shoes. They live in this hyperactive sense of being, thinking that if they never leave their child. everything's going to be okay.
Mm-hmm. And I learned really early on in my journey that I had to have space for me. to thrive. And I never in a million years thought my kids would still be alive. This statistically they're supposed to be dead already and they're thriving they're thriving I say that because I could live every day, and I do.
The thought is in my mind every day: will tomorrow be their last day? That thought will never leave my mind. But what I know is that my kids need a good mom. And for them to have a good mom, I have to care for myself. And I've always done that.
Within strict regimens. Like, I follow. The same schedule for myself and for my kids almost every day. And only up until this year have I ever gone out of that. Routine.
Because I know if I keep my kids on routine, that's predictable. It predicts for me to get the rest that I need. And it hasn't always been like that. I mean, I am almost nine years into this journey. And the first five.
I don't even know how many memories I have because it was so. hard. Yeah. But yeah, I feel like. The one thing is just like trusting the Lord, you know, trusting the Lord for wisdom with how to spend my time.
I'm coming up, I'm going to be taking Hazel out of state for like 11 days. And in the back of my mind, it's like. What if something happens to Russ when I'm gone? There it is. But if I lived my whole life that way.
I just feel like that would be the enemy gripping me. And the truth is, nobody knows their last day. No one knows their last day. My husband's last day could be today, and I don't know, you know, and so I refuse to live in fear. Yeah.
And I trust that the Lord is over it all. And That gives me an incredible amount of peace, but that does not mean that the enemy doesn't attack me in that way still. He does, but then the Lord just brings me back. Like, you do not have to fear. Yeah.
It reminds me of the scripture that talks about who of you by being anxious can add a single day to his life. And I I've thought about that. As a mom of typical children, even because you do, you worry sometimes as a mom. And, but even applying that to our children, you know, who of you, mothers, by worrying about your children, can add a single day to their lives? We can't.
And so. being able to trust the Lord with their lives, that's all we can do. And you know, I love how you had said in the beginning that God gave you this gift of faith and. Different Christians do have different doses of faith. We're not all equal with that.
We all have different spiritual gifts as well. And But we can look up to one another in that regard and find hope and find new ways to praise the Lord. I mean, again, that's one of the reasons why we share testimonies here. It's not because we want to have. You know, sad stories or all of this really emotional content by any means.
We want to have. Hope. We want people to hear your story and say, Not only am I going to pray for her, we hope that people will listen to you and pray for you and pray for Russell and pray for Hazel and your husband. But also for them to be able to look at your story and say, wow, if she can trust God in that circumstance, I can trust God in mine. Um We want to edify one another and encourage one another.
That's our role within the church. Um Going forward to how the Lord had kind of put a mission on your mind, when did that transpire? When did you decide, okay, I've got a book in my hair? Were you always a writer?
Okay. So, the funny part of that story is that I spent my entire elementary school years in special reading class. And this is one of the stories I tell the kids about. Is that I had always dreamt of like writing books when I was a kid, but I'm not a writer and I can't draw. And so I never really thought that that would go anywhere, but Hazel turned one.
And I was desperate to have a tool to explain to all my friends, typically developing kids, like, why is Hazel one and she can't talk or walk? And so I woke up one morning and I wrote my very first book, Hazelnut: It's Time to Get Up. And honestly, I thought I was just like writing a book. to give to the cousins and whatever. And it was that for a really long time.
I wrote it when she was one and it wasn't until four years ago that I actually self-published the book. Mm. Do you have a copy of the book there? Are you able to read it like a page or two from it, or like whatever your favorite section is from the book? Can you read part of that for us?
Yeah, I'll read the last two pages. And I actually just republished this book, and it's going to be coming in a board book soon. Oh, it's my final, my final dream coming true. It says, Baby Hazelnut wonders why people worry about her, but she knows that we have a big God who's in control and watching from above. Yeah.
The end of this story has not yet to be written, but Baby Hazelnut is not concerned and wants you to know it's going to be a good life. Yeah. So it's just the last two pages. But what I love about this book, this is a NICU story. And so a lot of kids, the siblings will read this book and they'll be like, oh my gosh, my little brother or sister was in the isolate too.
And like, especially kids who have feeding tube siblings, they love this book because they all recognize this feeding tube because this one has the same one. But. Yeah, I just was desperate for a resource. And my background is in education. And so I worked in a preschool and after school program.
And I wrote this book and I. I mean, one thing led to another that led to a teacher inviting me into her class, and I showed up one day. And if you saw the very first version of this book, by the way, nobody would buy it. I mean, the people who bought it, like you are amazing and you're probably still supporting the hazelnut movement today. Um But this gal invited me to come to her class, and I showed up at her class just to read this dinky little book that I had, you know, written at home.
And she had hazelnut. T-shirts made for me and all these classes to go visit. And the kids were asking questions. And I brought Hazel with me. And I left that day.
And I was like, I think this is more than a book. I think this is a movement. And I think God is doing something. And I think that He's taking that gift and that passion that He gave me for young kids. That actually was taken away when we had Hazel.
Because I couldn't go back to work. And he's bringing it together for his glory. And so one thing led to another. And now I go into schools. I spoke to 25, I led 25 school programs last year.
And we're going to be planning for 30, which is thousands of students next year. And it just blows my mind because um I cannot believe. That God has given me the greatest calling that I could have ever imagined, but it's been sourced out of my greatest suffering. This is not what I wanted my life to look like. This is like the opposite.
But then I look back and I'm like, God is so good because He didn't give me what I wanted, He gave me what I needed. Mm-hmm. Well, he wastes nothing. Yeah, I mean, you talked about how you had this education in, was it like early childhood? Yeah.
Was that what it was?
Okay. So, like, early childhood education. And then you were unable to use it after God gave you this special needs child. And yet that's not totally true. You know what I mean?
It's so neat. And we see that time and time again if you're looking for it. And actually, one of the things that you had said earlier that I think. I hear this time and time again when you had said that being able to share your story has been really healing for you. We hear that so many times, and even in the book, Hope in the Morning, you know, that's one of those things that.
So many of those writers came to me afterwards and said, This was so healing for me to write out my story. You know, I don't think that I understood that fully until I had gone through, you know, my own suffering and then written out my story. And it's because you can see the traces of God's hand when you write it out and you see, oh, Wow, well, when I tie this together, I can see how God gave me this education and God gave me this gifting and this interest. Because he actually wanted to use it over here. Yeah.
And that's such a neat thing. And here, you know, you had started this when you only had one child with special needs because you said Hazel was a year old. The Lord was going to draw you closer to himself and give you an even bigger testimony and an even bigger. Platform really to share the hope of the gospel. I mean, what a neat thing that God is allowing you to go into these schools.
And you know, maybe some of these kids have never even heard the true gospel, maybe they don't have hope. But again, if they can look at you and say, wow, if this mom has hope, and if Hazel and Russell have joy. I won't try it. I want to know how to have that. um so you you've been doing this ministry now or this this is it is a non-profit ministry Okay, so you've been doing it for about eight years.
Is that right? Or almost eight years? No, no, no.
So I have been going into schools for two years. Two years.
Okay. Yeah. So we've we've gone and done 25 programs in two years. Wow, so you started the book. Eight years ago and then that developed.
You've written quite a few books now. How many books have you written in total? I self-published 18 books in like two years because I just couldn't stop. I just started writing and writing. And then I started writing about other people, like, and telling other people's stories.
This book, 20 Superheroes, this is my favorite because this is the first time where, you know, the hazelnut movement is what we call it now. It was birthed because of me. It was births because I wanted to tell my story to help kids have compassion for my kids. And then what it turned into is I realized that I have a voice. For other kids.
And so now I get to write their stories and I get to go to their schools and I get to help their peers have more compassion for them. And that has so much more power. I think that that's so neat. And actually, that's a book that we're going to be doing a giveaway on, which is so cool because I think that that could benefit kids of all different ages. Because, I mean, you know, as a mom, sometimes when your kids see kids that have different abilities, they don't necessarily know how to react, but they learn from you.
They learn from the parent. And so if you can, if you can be educated, maybe through a book like Julia's. And be able to say to your child, let's go say hi. Let's ask them what their name is. And how would you want kids to approach Russell and Hazel?
Yeah, that's a really good question.
So, this is exactly why I created the hazelnut movement and why it continues to go on, is because I believe. That parents have done a huge disservice to their kids by making them feel guilty for asking questions that might be kind of rude. I really believe that the power comes when we let kids ask whatever question they have. And so I encourage. Kids to ask questions.
That's the biggest thing. And in every single one of our books in the back, you will see like a little page that has, let's chat, and here's some questions that you can talk to your kids about kids like Hazel. We call them the hazelnuts of the world. And, um, Okay. I really believe that kids have to be taught how to interact with.
Kids impacted by disability. Disability is such a broad term that. You know, you can't just know how to interact with Hazel and then be set for the entire world of kids with disability. But. I feel like If you can learn with one, then you can learn with another one.
And so I really am passionate about teaching them and letting them ask the hard questions at our program and talking about it. Like, okay, Hazel can't talk. Should we? Should we talk to her? And they're like, sometimes they say, I don't know, no.
And I'm like, you know, and we have those questions, like, of course, she wants to be talked to, even though she can't talk back. And, you know, talking about ways that we can help them in highlighting their disability so that kids can talk about it rather than them staring. thinking it's weird and saying, why is he in a wheelchair? If they say that to me, which that has happened so many times with Russell, because Russell cannot walk yet, you know, I love that. And I know not all parents do, but I really, really, really beg, like, if you're watching this.
Let that be the door that you get to open. Like that is your open door. To create compassion for your child when somebody says anything. Yeah. But they need to be taught.
They need to be shown. Yeah. Are there things that parents that are watching, including myself, like what are things that we can avoid, like things that are hurtful or unhelpful for parents or kids that do have different abilities? I think that Just teaching your kids up front that You can talk to them just like anybody else. I feel like if they understand that they are a person.
The rest is going to fall into place. And so like this. A whole idea of like if someone can't talk, like, why would you talk to them? This concept, right, that a kid might have. It's like, if I see somebody in a wheelchair, I might think, oh, I should go to their caregiver and be like, what's wrong with them?
You know, and a lot of parents, in all honesty, will be. Maybe not like that. And so I always recommend to kids. To just go to the child if you would like to and say, hi. My name is Julia.
What's your name? Who does not want to be introduced to like that? And guess what? If that person can't talk, They're going to have a caregiver with them. And their caregiver is going to be so blessed.
that you asked and you cared enough to know their name. And so I feel like that. If you do nothing else, like that is the starting piece to any relationship, right? Yeah. Yeah.
'Cause when When parents kind of hush-hush their children, like, you know, you see, you see that child in the wheelchair or, you know, a child that you can tell has special needs and your child starts talking about them. If a parent says, don't look at them, don't talk to them. Is that almost like, does that make it feel like you're not seen and your child is not seen? Like, like society is almost saying, don't, don't look at them, don't interact with them. And really in the end, to me, it seems like We do that because The the parent of the children who are asking the questions is uncomfortable yeah And so I mean, what is the impact of parents that behave like that?
And I think we've all done it. You know, I'm sure that I've done it in a grocery store and my kids are pointing or something. I'm saying, don't point, you know? Yeah. But How does that kind of a reaction impact the child and the caregiver with the special needs?
I mean, I think it really is situationally dependent. And I think every person's going to react and be impacted the same way. All I can say is, when we do not let kids ask questions, even when they are hard ones, we are robbing them of the opportunity to have compassion for that person. Storytelling is the one thing that bridges the gap. to compassion.
I've seen it every single time. And when people listen to my story, a lot of times when I'm a keynote speaker as well.
So a lot of times when I do keynotes, I share my story and I tell people, look at how you feel about me now. Like you have instant compassion for me based on my situation. That's the same thing we can do for our kids. And so for me. I would rather focus on Helping other parents understand that they have an incredible job that they get to do, and that is to allow their kids to ask questions.
And guess what you can say if you don't know the answer? Like, hey, that's a great question. Let's look that up when we get home. Or Let's go up and ask their name. Don't you want to go say hi?
I'm not sure why they're in a wheelchair. Do you want to go say hi? Yeah. I know that you have mentioned before that there's there's a neat camp that your kids get to go to, and it's very it's a very inclusive camp. Can you talk to us a little bit about that and just kind of the joy that, that has brought to your family too?
Yes, so Camp Celebrate is a camp in the Smoky Mountains in East Tennessee every year. Actually, there's two weeks now in July, and it's a family camp for families impacted by disability. It is not only a blessing for those families, which I am one of the families, but the volunteers.
So they, I don't even know the ratio, but every single person impacted by disability has a buddy. And when you drive up to the camp, there's like 100 people standing out front. I'll dress in costume with the whatever the theme it is that year. Cheering and so happy and so glad. And your child's buddy is waiting there with the sign with their name, like Hazel, Russell.
And I am telling you, the first time he rolled up to that camp, I realized as I'm in tears, you know, not expecting so much emotion. I didn't know what to expect. This is the first place that we've ever been that was actually created. For our kids, we live in a world. It's not created for us.
Mm-hmm. And then you walk into this camp and you're like, oh my gosh, like they planned this for me. These volunteers paid. to come here. For me?
And to serve my kids? And it is incredible what the Lord does on that mountain every single year. I'm telling you, if we have families that travel, we have a family that's traveling from Florida all the way to East Tennessee. They bring their kids every year because they are like, these are the kids that we want to raise, our kids that are grown in proximity to people who are different than them, who have access to the kind of joy of the Lord that you cannot believe. And this year, I think that same family is bringing like 14 volunteers with them.
Wow, is it a cold? Yeah. Okay. Okay. Yeah.
What an incredible thing. Like, I thought that was such a neat thing when you talked about that because. It is like, what a neat thing to make a whole environment. That is catered to your children. all week long.
Like that, that is just such a neat thing. What are some things that you have learned from Hazel and Russell? Like, how have they made you a better mom, a stronger believer? Hazels really caused me to slow down. If you follow me on social media, you will quickly...
Be exhausted because. My capacity in life is so much. And that's just how the Lord has gifted me. But Hazel has slowed me down and slowed me down in a way that the Lord wanted me to when I'm laying in bed with her at night, especially recently. And I just look at her and I think, you know, when was the last time I just stopped?
And looked in her smile and just. bathed in her joy. And I think she has a gift to draw people in and to. Create presence. in a way that I've never seen anybody else before have.
Mm-hmm. I've been wondering for about five years, what is his gift? Because he cried. For three years solid. Wow.
No exaggerations. colic, I guess, for three years. And he's been a really hard kid. And recently, he's grown into a joy of music and. We've been bringing him into church for worship and he.
He's just really teaching me what it looks like to worship the Lord without holding back. And he, I mean, his legs are going like waving as much as his hands are. Like his whole body, you can't even hold him because he just wants to worship the Lord so much and he just loves the music. And I just keep thinking every Sunday at church, I'm like, I have to bring him to the front row every Sunday because I believe that God has put him on this earth. for people to watch him worship to inspire their worship from the back.
And um It's pretty incredible, but it took a long time to find his gift. Yeah. That's incredible, though, how the Lord used both of your children to grow you. in two really important ways. I mean The Lord, he wastes nothing.
And I just I think that testimonies like yours are so They're inspiring because, you know, whether you have children with special needs or not, or maybe no children at all, what you just said are two really important aspects of the Christian life and even in our ability to minister to one another. Because if we don't slow down, you don't see the needs because you're so busy, you're so caught up in your own world, in your own agenda. You cannot see the needs of those around you and That's our role here as believers on earth: is to be the hands and feet of Christ. We can't minister to others if we don't know what their needs are. And we can't know the needs if we don't slow down long enough to see them.
And then what you were saying as far as worship, it's like everything can be an act of worship. You know, when you sit with your children, that can be an act of worship. when you're taking care of your special needs children, that's an act of worship. When you're telling other people about your testimony. that's an act of worship, every bit as much as singing a praise song.
Like our whole our whole lives can just Just You know, eminate. worship, which is what it should be. And we were designed for that. And so, what a neat thing the Lord has given you two precious children to direct you in those particular ways. As we close out the episode today, I would love for people to find out where they can not only follow you, but also where they can get your books.
If they wanted to book you to come be a speaker at their school, do you speak at churches too?
Okay. So if they wanted to book you to be a speaker, how do they go about doing all that? Yeah, so if you just go to juliaherman.co, you'll find all the information for keynote speaking, school programs. There's a bunch of free resources on there as well. I have like a free texting devotional.
So, so many resources. We do free resources for educators as well.
So you can just go to juliahrmin.co to find our website and all the information is on there from free teacher resources, a texting devotional that I give away for free as well, how to book a school program, how to book a keynote, and how to donate and be a part of what we are doing in these schools. One of the things that we know is that a lot of schools want this programming and they need financial help to get there.
Okay. And with our last closing statement here, I would love to know: how do you hope that? Each Hazel and Russell will be remembered in their life. Um When you say that, it makes me think of the Hazels and the Russells of the world.
So that's immediately where my mind went. But. I think about it often. I have a texting note, a little note in my phone. where I put notes, what I will want to do when they pass away.
And I just see the hazelnut movement. I see their legacy going on through story. In video, I have a dream of creating a documentary. And sometimes when I think of it, I think, I really hope that I can do that before it's too late. Because God only knows.
How long that they will live. But I just see their legacy being their life and their joy shared. Through video.
Okay. Well, it reminds me of like Nehemiah 8:10 says that the joy of the Lord is our strength. And again, I mean, if you're watching this, follow Julia on social media too, which you can find her just with Julia Ehrman. And Her kids are just, they're full of joy. They're full of happiness and a reminder that every life is precious.
Every life is created in the image of God. And that's what we want to point our children to. And everybody has a testimony and something beautiful that life is. Purpose for them. And that's what we want to, that's what we want to lead this episode with: is the fact that every child, whether they have special needs or whether they are neurotypical, the Lord has a unique design for them.
And we want them to see each other. We want them to see the goodness of the Lord in each other's lives and the faithfulness of the Lord and be able to praise him and worship him. In every season.
So, Julia, I still appreciate you coming on and sharing about your two precious children and the ministry that you have. and I hope that many people will go and not only follow you but support you as well. Thank you so much. Ah! Join us next week on Hope in the Morning.
Hope in the Morning is a non-profit ministry that seeks to encourage the hurting. Equip those who walk beside them, and evangelize the lost with the hope of Jesus Christ. To partner with our ministry or to make a donation in your loved one's honor, please visit hopeinthemorning.org. Your donation helps keep these stories of hope on the air. and helps tangibly meet the needs of the herding.
