Feb. 6, 2025
We Are The Hansons The Experience of Being a Parent to a Child with a Chronic Illness
Parenting comes with challenges, but when a child has a chronic illness, it adds an entriely new layer of complexity. In this episode, we open up about the emotional, physical, and mental toll of navigating life with a child who has ongoing medical needs. We'll discuss the realities of balancing doctor's appointments, medications, and everyday life while ensuring our child feels supported and included.
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Welcome back to We are the Hansens. If you're new here,
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We're a big, loving, sometimes chaotic family sharing the highs
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and lows of parenting, marriage and everything in between. Today's
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episode is a deeply personal one, one that shaped our
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family in ways we never expected. We're talking about what
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it's like to be a parent to a child with
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a chronic illness. It's a journey full of fear, frustration,
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resilience and love. And while it's never easy, it has
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taught us so much about strength, not just in our child,
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but in ourselves and our family as a whole.
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Let's get started. So finding out that your child has
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a chronic illness isn't something that anyone wants to hear,
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and you tend to remember that exact moment for life.
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It's something that you never want to hear a doctor
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or anyone tell you your child is got a chronic illness.
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From experience, we have dealt with it for a long time.
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First it started our son Gavin. He had what they
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call multi systic kidney and they found it before he
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was born, and he ended up going through a lot
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of medical procedures and stuff like that. But eventually the
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doctor just told us, we don't know what else to do.
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Hopefully he grows out of it. So far he has
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grown out of it for as far as we know.
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That was a scary thing. And then we go to
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our daughter Madison. She had a tumor the size of
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a little bit bigger than a dime, just about nickel
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size in her neck that had to be removed. And
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then Anna, our little Anna, was born three months early.
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She contracted a blood infection called entrobacter, and she also
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contracted another infection called spinal meningitis. Needless to say, she
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had bleeding and fluid on the brain, so they had
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to put a shunt in. Now, you know, battling That
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was scary in itself, knowing that she had to be
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put under and a device placed in the brain to
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help her be able to live a somewhat normal life.
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So far, she's lived what I feel is a great life.
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But I also see the hurdles and struggles that she carries.
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One of them being, you know, headaches, living with headaches.
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Nobody ever wants to live with headaches all the time.
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It is horrible. I used to get headaches really bad
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in migraines. I ended up seeing a chiropractor and that
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took that away. Thank goodness. Hers ain't quite that easy.
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Hers is more complex, and as the doctors tell us
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that she has such a complex medical condition, we are
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walking on shells everywhere we go, just trying to figure
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out what is causing these symptoms. And we still have
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yet to figure it out. We're working on it. We're
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working on it. As a parent with a child with
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a chronic illness. Anna has her headaches, she has her
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stomach issues, she's having throw up issues. You know, we've
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been battling the seizures for a long time. We know
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she's having two different types of seizures. We only know
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what one is, which is the absent seizures. We don't
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know what the other one is. I've been pushing for answers,
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still have none. And then this throw up issue. She
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throws up constantly, and she has since she was a baby,
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so this is nothing new. She's seven years old now,
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she'll be eight in July. So it's always a fight.
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It's hard because you sit there and see your child struggling.
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They get sick of taking medicines, which she's on four
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different medicines right now. They get sick of throwing up
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all the time, which we can't figure out why she's
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doing it. They get sick of everything being sick. They're
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just tired of it. And as a parent, I personally
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really struggle because I hate seeing her sick. And it's
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not a contagious sick, it's the illness that she carries
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with her. So that being said, I struggle really bad.
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I am the one that will push because I'm her
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voice and I want answers as well. I want to
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know why she's getting sick. I want to know why
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she has headaches all the time. I want to know
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why she's having seizures. There has to be answers. There
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has to be something there that is causing this. And
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that's what I say to the doctors all the time.
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And I think the doctors are getting pretty sick of me.
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But that's okay. They can deal with it because I'm
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sure if it were their child, they'd be the same
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way as I am pushing for answers. So we have
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a gastrologist, we have a neurologist, we have a family doctor,
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and we have a specialist for her eyes. We have
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all these doctors and so far, none of them have
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given us the answers that we need. We are still
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sitting in limbo. We're still on all these medicines, and
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most of the medicines are trial medicines. They either work
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or they don't. They try them for two to three
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weeks and then they switch her to a different one.
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It's not fun, not fun at all, and us as
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parents have to battle to get answers. And it's not fair,
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you know. We sit there and watch our child go
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through medical procedures and doctor's appointments and they're sticking them
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constantly with ivs and needles. And who wants to sit
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there and watch that? I mean, I guess if you're
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a nurse, you may because you're learning. But I don't
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want to sit there and watch them stick my child
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and poke and prod her and hurt her. It's miserable,
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and it's miserable more for them. So even though we're
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feeling miserable, I just sit there and think, Man, I
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feel really bad for her, and it's something no parents
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should have to go through. I'd rather just take the
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illness from her and put it on myself and deal
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with it on my own, then watch her go through it.
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She doesn't want to do all this. She doesn't want
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to go to the doctors. She doesn't want to go
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to see the specialist. You know, she doesn't want to
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take the medicine she's on. She's getting tired, and I
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don't blame her. She wants to be like every other child.
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No medicine, no doctor's appointments all the time, not missing
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a lot of school, because she does miss a lot
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of school going to all these appointments. So it gets rough.
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I'm sure if you're out there listening and you know
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somebody with this chronic illness or any chronic illness, you
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will know exactly what I'm talking about. It's rough. It's
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almost like you're on a roller coaster and you hit
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a bump. Kurt goes off track a little bit, but
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then it goes back on. And you're riding along and
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you take a turn and you're goes off the track
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a little and then it goes back on. It's like
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that up and down, up and down, side to side.
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You know, we never know what the next day is
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going to bring, or even through the middle of the night.
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I remember her first seizure she had. It was early
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in the morning and I was in the bedroom watching
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the news. Jeremy had just came back into the bedroom,
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and Anna and the kids were in the living room
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watching TV cartoons. I heard a noise and it sounded
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like a book or something fell on the floor, and
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I heard a loud thud and Madison yelled mom. Anna
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and I went running out there and she was in
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a full blown seizure on the floor in front of
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the television. She had already went to the bathroom and
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her pants. I picked her up and I was trying
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to get her to come to but she was shaking
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so bad. I couldn't hold her, so I handed her
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to Jeremy. He sat with her and talked to her
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and made sure she didn't bite her tongue. It lasted
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a good amount of time. It was like two minutes
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and forty six seconds or something like that. That it lasted.
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That is something I never want to see. It made
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my heart break. It was to the point where when
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my kids get hurt, and some of you may know
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this from experience, I'm that person. When my children get hurt,
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I cannot deal with seeing them like that. So in
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this sense, when Anna collapsed and she was in her
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seizure and I seen her. My heart started beating so
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fast because I was so sk scared. It felt like
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it was going to beat right out of my chest.
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At that point, I ran into the bedroom and I'm
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trying to find clothes because I'm wearing pajamas and I'm
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trying to get dressed in regular clothes. As I'm yelling
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out to the living room, should we call the ambulance
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and Jeremy said, no, I think she's okay. And at
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that point I walked out to see her and she
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was not with it, like I could put my hand
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in front of her eyes and she was in a
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dead stair, just staring off into space, wasn't responding to me.
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I was scared. I've never ever seen somebody have a seizure,
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so that scared me really bad. I called her pediatrician
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and I asked if I could bring her in and
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what we just experienced, and she said, yeah, bring her in.
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So I hurried up, got Anna all cleaned up, and
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we jetted to the doctor's office. And we get there
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and Anna was still so out of it. The doctor
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looked at me and said, this isn't our Anna. She's
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definitely got something going on. She said, I can either
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call an ambulance or you guys can take her to
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Springfield Hospital and I will call up there to let
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them know you're coming to the er. So that's what
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we did. We got in the car and we went
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from there to Springfield to the hospital. Immediately. As soon
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as we got there, they called us right back. Didn't wait.
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They got her started on Kepra, which is a seizure medicine.
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They did a bunch of labs, a bunch of scans,
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they did the work upon her. Then they sent us
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on our way and Anna slept for a long time.
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She was so drained from just that two minute, forty
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six seconds seizure that it took everything out of her.
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She was drained. I did get her to eat a
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little bit that night, but I was so scared to
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leave her sleep anywhere but next to us, because I
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did not want something to happen in the middle of
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the night and me not hear her. So there was
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that time. Then she had another seizure. We were actually
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going to Branson to go out on a boat, and
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we were traveling there and we got about thirty five
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minutes from home and Maddie was sitting in the back
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seat with her and Torn, and she yelled, mom, Anna,
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and I looked back and Anna had a piece of
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she was two in a piece of gum, and she
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just was in a full blown seizure again. So I
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got the gum out of her mouth and I told Jeremy, Jeremy,
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you need to pull over. So we got to where
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we could get into a Walmart parking lot. We got
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her out up and moving around a little bit, but
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she was still real hired, not wanting to do anything.
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She slept for like four and a half hours after
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that seizure, and as soon as she woke up, she
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didn't really remember what had just happened, nothing at all,
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just that she was really tired, and she said, can
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we go on the boat now? She remembered where we
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were going. We did end up going out on the
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boat after that, but scary. And then the last seizure
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she had, we were working and her and Torn were
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with us. They were sleeping in the car and I
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had the windows down and we were within four feet
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of the car, so we weren't that far from the car,
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and I heard Torren scream for mom and dad. We
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went over there, and Anna again was sound asleep, but
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in a full blown seizure. It's not fun, not fun
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at all, and it's very heartbreaking as a parent. And
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I'm sure if you guys that are listening, if any
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one of you have a family member anything that has
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chronic illness or anything like that, you would understand what
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I'm talking about. It's not fun and it's heartbreaking. You
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don't ever want to see a family member go through this.
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People often don't see what life is like behind our scenes.
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You know, behind the scenes, like the doctor's appointments, the medications,
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the sleepless nights, the advocating for your children. You become
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not just a parent, but a medical expert and a researcher,
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a full time advocate for your child's needs. And that's
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what I do. I work, I advocate, and I do
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everything I can for my little girl. There are the
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daily struggles, balancing doctor's visits I often forget about doctor's
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appointments until the last minute, and school schedules, making sure
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siblings aren't feeling left out, Navigating insurance battles because we
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do that often. And then there are the emotional struggles
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which I've had because watching my child and pain and
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feeling helpless and worrying about their future. You often do that.
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One of the hardest parts is that unexpected stuff. Some
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days are great and you almost forget on those great
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days about the child's diagnosis because you're living a normal day.
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But not all days are like that. Some days you
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just see a whole different level. And everybody asked me
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how it affects our whole family. When one child has
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this chronic illness, it affects the whole family because it
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changes the way we parent, It changes the way our
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marriage functions, even the way the other kids experienced childhood.
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It changes that for our other kids. It's been a
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lesson of patience and empathy. They've learned to be more understanding,
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more flexible, but we've also had to be intentional about
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making sure that they don't feel their needs come second.
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It's a delicate balance in one we don't always get right.
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It's hard, but we have also learned to take things
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