There are many reasons we lose sleep as parents of children with disabilities. Maybe our child requires nighttime medical care or monitoring, and we don’t have nighttime nursing. Perhaps we feel guilty for sleeping while they’re not. Or we are unable to sleep while our minds buzz with a never-ending list of tasks of care, of past trauma, and fear of the future.
In this episode, Jill shares what keeps her up at night and the things she does to try to get a little more sleep.
Jill Arneson 0:00
It's a lot. We carry a super heavy load, and you need rest, but rest is hard.
Madeline Cheney 0:06
Hello, you're listening to The Rare Life. I'm your host, Madeline Cheney. Today I am joined by parent Jill Arneson to talk about the chronic sleep deprivation that so many of us face as parents of children with disabilities. There are so many reasons that we lose sleep. It goes beyond the most obvious reason of having a child that requires nighttime medical care and not having nighttime nursing. In this episode, Jill and I chat about the reasons she hasn't slept since the birth of her now seven-year-old daughter, Kate. I have no doubt that you will relate with those reasons to at least some level. This episode was originally planned to be packed with tips and advice of how to get more sleep and then to have a bit of solidarity in there but with a scheduling miscommunication, our sleep expert didn't join the interview. So, it became an episode packed with solidarity and with a few tips in there, which I'm actually super pleased with, and I think it was meant to be. I loved this conversation and I know that you will, too. I'll share a bit more about Jill and then we'll jump right in. Jill lives in Fargo, North Dakota with her husband and three children. Kate who is seven, Cooper who is four, and June, who is two. She owns a power sports business and is on the board of directors for Prey for Gray, which is North Dakota's only brain tumor organization, which will make a lot more sense once you hear more of her story with her daughter, Kate. Jill is a lover of books and spending time at the lake. All right, let's dive in. Hi Jill, welcome to the show.
Jill Arneson 2:08
Hi, thanks for having me.
Madeline Cheney 2:10
I'm really excited for this one. I'm so excited to talk about sleep deprivation because it affects so many of us, and sleep is one of those things that we don't think about if we're getting enough sleep. If you're not getting enough sleep, it's like your body is in this mode of, 'I have to get more sleep', and that's pretty all-consuming. I'm excited to shed light on this and help other parents who are dealing with similar things know that they're not the only ones, and to feel that solidarity. So, I would love to start out with you sharing your story with your daughter, Kate, and the lens of sleep, like how your sleep has been affected and parts of her story that affected your sleep.
Jill Arneson 2:54
Kate is seven years old, and when she was born, she came out and made this funny little noise. The nurses commented on this noise she was making and they said they'd never heard such a vocal baby. At night, in the hospital, they ended up taking her out of my room because she made this noise all night long and they wanted me to get some sleep. So, it basically started on day one. We took this baby home and she would make this noise all day and all night, and sometimes it would last from six all the way 21 hours, which was the longest one we had. Every seven to 12 seconds, she would make this noise for three to five seconds long. I would stay up all night because I felt guilty, like, "I can't sleep and I'm exhausted but my poor baby can't sleep so why should I sleep?" We kept bringing her to the doctor and then he told us we had a colicky baby. Someone just told us we had a difficult baby, or maybe she'd have some behavioral issues later on in life. Autism was even thrown around in some of these appointments, and we were never really given answers. So, fast forward to lots of misdiagnoses, and eventually, when she was 11 months old, they found a brain tumor called the hypothalamic hamartoma, and with the hypothalamic hamartoma comes a type of seizure called the gelastic, or dacrystic seizure, and they come across as either laughing or crying, and they typically last only a few seconds. We would take her in and be like, "She keeps making this noise, we think she has this seizure associated with this tumor." And, eventually, we finally got that diagnosis. Then I wasn't sleeping because my child was seizing all night long. Why should I be able to sleep when she's suffering? It was a lot of guilt. I just didn't feel like I should sleep if she couldn't. When she was 19 months old, the seizure was resected at Phoenix Children's Hospital, and they have a program specifically for this tumor. We knew, going into this surgery, that she was going to have a lot of complications from it but we had hoped that the surgery would stop the gelastic seizures she was having, so we had the surgery. The night after surgery was the first full night of sleep in her life.
Jill Arneson 5:26
She was 19 months old?
Jill Arneson 5:28
19 months old, yeah. We were in Phoenix for two months, we came back home, and then I still wasn't sleeping because now we know that with this surgery, her seizures can come back or other forms of seizures could pop up, so I'm staring at this monitor all night long waiting for this time to come. And it's always been in the back of my mind. So, we went five years, three months and one day, seizure-free, and we're very grateful for every second we had. Then, this last July, our dog woke us up in the middle of the night and we found Kate upstairs having a tonic-clonic seizure. And she's been having seizures ever since. We're kind of traveling back down that path. She's not having those gelastic seizures anymore, and for that we are grateful because those are not treatable with medication and there's no more surgery options for Kate. We're still just battling that. Another issue she got from the surgery is something called hypothalamic obesity, which a lot of Prader-Willi kids struggle with. Kate doesn't have a hunger mechanism so she would wake up in the middle of the night and go seek food. We're always watching that monitor and trying to keep an eye on her and try to catch her before she comes downstairs for food. We're always taking these precautions to try to make our sleep a little bit better because sleep is so important.
Madeline Cheney 6:59
Yeah, I feel like that is such a difficult place to be in with sleep because when you're in that mode of feeling guilty, like, "Oh my gosh, my baby's suffering right now, how could I just lay here and sleep while she's suffering?" Even if there's nothing you can do about it, I can totally see why it would be so hard to sleep. Then, to be in that mode of trying to monitor her and make sure she's safe during the night and that she's not getting the food, you can't fully relax and so, to try to sleep during that, and I'm preaching to the choir here, that's just not going to happen. How are you supposed to sleep well if you're trying to stay half awake? You wake up to the alarms or the monitors to help your child, like, it's just not going to happen.
Jill Arneson 7:48
It's crazy, and sleep is the most important thing. I go to therapy regularly and my therapist, Carol, she's fantastic, and the first thing she asks me every time I come into our office is, "How's your sleep?" And I'm like, "Oh, I'm trying."
Madeline Cheney 8:05
Yeah, and the reason why your therapist is asking you about that is because it has such an impact on how we can handle things emotionally. I'm obviously not a sleep expert, but you just don't have access to that prefrontal cortex activity as much when you're sleep deprived, especially when you're chronically sleep deprived. I just feel like that's going to really impact your resiliency and how you're able to handle life, like things being difficult and challenging, and everything's more overwhelming when you're tired.
Jill Arneson 8:35
So much more. Some things that we've done to try to help us sleep, I can't speak for my husband, he sleeps pretty well. He does wake up intermittently throughout the night and he has this bad habit of rolling over and going, "Is Kate okay?" Like, I don't know. Instead of waking me up, you could check the monitor to see if she's okay. Yeah, I love him, and he's a worrier, for sure. We've done things like we have locks on our pantry, that's one thing we've done to help us sleep. We have alarms on our refrigerator so anytime you open the doors, we would be alerted to that. We actually have a separate camera from our other two children. So, Kate has a nest camera in her bedroom, and we have a Google Home on our nightstand. So, it's that fine balance of like, "Is this healthy for me, to be recording her and seeing her all night? Is it making it worse because I'm staring at it all night, or is it making it better since it's giving me peace of mind?" So, that's kind of interesting. We can always look back on the recording, and our phones alert us to any motion in her room. So, I feel like that has given us a little bit of a peace of mind, knowing that we have precautions in place. Any parents of a child with epilepsy will know that SUDEP is always the ultimate biggest fear. So yeah, that's always another thing that can cause sleepless nights.
Madeline Cheney 10:07
Can you dive into that a little bit? I'm not an epilepsy mom so I don't know what SUDEP means.
Jill Arneson 10:13
'Sudden Death from Epilepsy'. So, people with epilepsy can have a seizure in the night that can cause them to pass away. We always want to be with Kate to comfort her, even though she may not know we're there during the seizure. You want to be there, and you have to time it and you have to take notes and sometimes administer rescue medication. You want to be there the second it starts.
Madeline Cheney 10:43
Oh my gosh. I think that's something that a lot of parents listening can relate with, is like, "What if my child passes away when I'm not there, and I sleep through it?" Because it does happen. I think that's what's so scary and I think it's also something that a lot of people try to comfort parents with, like, "Oh, it won't happen. Don't worry about it." I don't know if you've had that before but like, "He won't pass away, don't think that way." But it does happen. It's a brutal way to look at reality, but it is what it is. I think living with that in the back of our minds at all times is obviously going to impact everything, including trying to sleep and find a state relaxing enough to fall asleep.
Jill Arneson 11:28
Yeah, you want to be aware of these possibilities, you still want to be positive, but we can't ignore some of these comorbidities that come along with our children's diagnoses. We need to know what can happen and find that balance of knowing but not having all these irrational thoughts about it. For me, I kind of go through a checklist in my head at night of what could be stressing me out or what's causing me anxiety, and can I even do anything about that and mentally cross them off? Or even write them down, like, "What are you worried about right now?" Sometimes, just crossing it off on paper or mentally crossing it off your list will help eliminate some of that anxiety, and hopefully helped you rest a little bit better.
Madeline Cheney 12:19
That's such a good idea. I love that so much because there is so much outside of our control, and trying to let go of some of those things is easier said than done. I love the physical way of doing that. I know that this is not totally the same thing but one thing that my husband and I have been trying when we are having a hard time sleeping with our minds buzzing, it's not even just about Kimball but just about life, we try to do 'containing', and anyone who's done therapy might know what this is, but it's where you put things in containers and you visualize a safe place. For my husband, it's Laguna Beach, California, and he's sitting on the beach. He pictures what it feels like on his skin to be there and the sounds. It's really just visualizing somewhere really peaceful and that feels really safe to you. And then you visualize what kind of containers you have. Maybe it's little boxes or, for me, I like to have ornate, beautifully carved mahogany boxes for things that are really near and dear to me but I need to not be thinking about when I'm trying to go to sleep. We picture lovingly placing these things in the boxes, closing the lid and thinking, "I'll deal with that another time," and then putting the box down. And doing a separate box for each thing that is on your mind. It's helped me a bit and it's helped him a lot. That's one technique I would just throw out there. Which reminds me of the checking off the list thing, but anything that helps you not think about this right now.
Jill Arneson 13:45
It reassures you too, that it's a valid concern, you just can't do anything about it at this moment.
Madeline Cheney 13:51
Yeah, of course I'm worrying about that but you don't want to bash yourself for these things. A lot of these words come from a place of love.
Jill Arneson 14:00
Right. Something with caregivers, too, is a lot of people are like, "Why don't you go to a sleep doctor and get sleep medicine," but as a caregiver of a child with disabilities, we can't be knocked out, we have to be coherent. I just think back to that night in July when Kate had her seizure. If I were an individual on some sort of sleep medication, I may not have been alerted or been coherent enough to assist her or call 911 or start CPR. So yeah, it's just tough. There are so many other avenues that we can and should explore and prioritize, which is really rich coming out of my mouth, because I'm the worst at prioritizing myself but I know I need to do better and that's important to take care of myself. We all do.
Madeline Cheney 14:52
Yeah. And that's one thing too, when we're talking about sleep deprivation, I'm very aware of the population of us with children that don't necessarily have these medical emergencies that could happen during the night, like Kate or kids who are maybe on like a trach and vent and things like that, but even just PTSD and night terrors. Carly Henderson talked about, in her episodes just recently, but even that can be a reason to lay awake all night, you know, your child may be sleeping peacefully but we're tossing and turning and hyperventilating. And I'll just put a nod-in for that too, for that whole facet of sleep deprivation.
Jill Arneson 15:30
Or our busy schedules, all the therapies and all the appointments, lying in bed and going through that schedule, like "Okay, what do I have to do tomorrow? We have OTBX PT, and then schedule an appointment," or whatever it may be. It's a lot, we carry a super heavy load and you need rest, but rest is hard.
Madeline Cheney 15:50
Yeah, just to put that load down, I think that's just really difficult. Picture a really, really loaded backpack, and to be able to take that off while you're sleeping. I mean, that sounds so freeing if we can figure out how to do that, to take that big backpack off, maybe that'd be a cool visualization. "I'm taking this burden off for the night. I can sleep," and maybe positive affirmations like, "I will wake up if my daughter needs me." Whatever you need to do, but just to try to take that load off for the night.
Jill Arneson 16:21
I love that. And we don't have to put that backpack far away. We can set it on our nightstand. It'll be there tomorrow, and it'll even be there in the night if we need it. We can pick it back up.
Madeline Cheney 16:33
Yes. Going back to validating what we're worrying about, this backpack is maybe difficult to carry but it also represents all the loving care that we get for our children and the worry that we give our children because we love them so much. I feel like it's complicated because we can resent that backpack, I've definitely been there, but to still be like, "But this is special and precious, and it's not bad." I'm loving that metaphor.
Jill Arneson 17:02
I know, and going back to Karley's episode really quick because she did such a fantastic job and sometimes when I'm lying in bed, even if I'm feeling well, I know in the back of my mind I'm having all these concerns and what-if's, I might have a little bit of undiagnosed PTSD myself. I think we all experience a lot of that on different levels, and that definitely has an effect on our ability to get good rest.
Madeline Cheney 17:30
Yeah, can I tell a story really quick? This is bringing back a memory. When I was in, I know I talk about this a lot but that first year-and-a-half with Kimball was just so hard. I got to this point where I wasn't sleeping. He couldn't breathe super well so it felt similar to what you're talking about with Kate where like, "How can I sleep while she's uncomfortable and seizing?" I had guilt of like, "How can I sleep while he's working really hard to breathe. And I know he's not comfortable." It got to the point where I just couldn't sleep. I think I would get four hours a night. And again, when you're in that state, you're already dealing with so much crap, you have so much going on emotionally, and then to not sleep, everything just falls into despair. I feel like despair sets in really easily. That kept happening night after night. I was not sleeping. I heard this quote once that when you can't sleep, insomnia sometimes is when you have grief that's not dealt with. And so, I was like, “Oh, I need to go to a therapist about my dad who passed away from brain cancer two years ago.” And so that's what I thought I was going to the therapist about. I was like, "That's it. I need to sleep." That's what got me going to a therapist for the first time. I met my therapist, Rosie, who I've had on the show and I've talked about her before because I like love her. So, I went to this therapist and it was so interesting because in talking to her, we talked about my dad for like one half of a session, she was like, "Oh, actually, you sound like you've dealt with this in a really healthy way." And then I realized, "Oh, I'm here to talk about Kimball. I'm here to talk about all the trauma we've gone through." As we worked through that, specifically with EMDR therapy is what helped me, I started sleeping again. That's how I could tell it was working. It's interesting where it's like, the stuff we go through really needs to get processed and I think sometimes our bodies take the hit of these emotional burdens that we're carrying. I'm sure there's some science behind this but sleep is one of the things that our bodies are unable to do when we get to that point of like, we need to work through this stuff that's going on. Anyway, that's my story, and I feel like the trauma really can affect our sleep.
Jill Arneson 19:49
While you were saying that, I was just thinking, and I've said this before, my best nights of sleep are the days after I've had the therapy session. It's almost like we brought that backpack to therapy and pulled a few things out of it and left them with our therapists like, "Okay, we can leave a little bit of this here." I sleep my best after a good therapy, or any therapy session, they're all good.
Madeline Cheney 20:20
Or even a good cry. I don't know if you've had a similar thing but like, if really letting out and having that release, just really ugly crying, I feel like that also makes it easier to sleep because it's like you've released that. Maybe taken that backpack off? I don't know. Maybe that really does help us let it go for a minute because we dealt with it, can put it down, and go to sleep.
Jill Arneson 20:43
Yes, I agree. I compartmentalize really bad so those good cries don't come as often as they should but you are so right. You feel better and you sleep better after. It's important.
Madeline Cheney 20:57
Yeah. Are there any other tips that you wanted to share before we end this conversation that have come in handy. Either in getting better sleep or in coping with just living with less sleep because let's face it, that's some of our realities.
Jill Arneson 21:11
I wish I could give the tip of napping. That's kind of unrealistic for me, it's like I have this guilt. I take a nap and I'm like, "Oh, I could have done so much more in that time," because we're extra busy moms and we have so much going on, and all moms are busy. All parents are busy, it's wild. My biggest thing is, put your phone down, turn the TV off, less distraction, and just try to meditate before bed and make that mental or physical checklist and cross off the things that you simply cannot do anything about right now. Now that's my biggest thing. And therapy. Oh my gosh, therapy. If you can, it's the best thing ever.
Madeline Cheney 21:53
Yes. Okay, let me like put this plug-in too, listening to the podcast. Let's be honest, like a lot of people said, this has been a form of therapy, just hearing other people talk about this stuff and kind of processing through it that way. Taking advantage of that kind of thing and talking to other parents or seeking community this way, I feel like that is therapeutic, even if it's not therapy if you can't access traditional therapy.
Jill Arneson 22:20
Yeah, I'm a huge fan. I'm an avid listener. In my head, you and I are already great friends. And my thing is, I like to listen to this podcast on Tuesday nights. I just pop in my air pods, the kids are in bed, and I just clean and I forget I'm cleaning because I don't feel alone. I feel like I have a sense of community. It's very, very therapeutic to listen to you and other people share their stories and just hear that we're not alone. We're all going through something. It's been really helpful. But yeah, any form of therapy, and everybody has lots of different forms of therapy. For me, it's podcasting and reading books.
Madeline Cheney 23:03
I love that. And even journal writing, there really are so many things we know we can do and I feel like that's another hard thing about all this is, a lot of times we know. Like, "Okay, I know I should be meditating. I know I should be journal writing and I should be going to therapy," but when you're in that survival mode, I feel like, at least for me, I don't want to do anything healthy. I just want to sit and binge this TV show and eat crap and just do things that make me feel worse. To have the energy to do something that will help you feel better, sometimes it just feels a little out of reach. I guess that's okay too, to be in that state for a while, as long as you need to be.
Jill Arneson 23:44
Sometimes you just need to watch some trash reality TV on the couch. Maybe that's your form of therapy, or thinking back to the last episode, numbing out. Sometimes you just have to.
Madeline Cheney 23:56
Yeah, and I love the attitude that Anna had of like, "It's just a tool. You don't need to think of it as a bad thing. You can be neutral about it and know that choices have different effects on us." So, if you can write down the list and check it off, great. Do that. And if you have the energy or the wherewithal to do things that are healthier, that's awesome. And if you don't, you're not a bad person and it's very understandable. Okay, I would love to wrap up with a little pep talk that you can give other parents who are listening right now and are just like, "Yes, I get this, I'm so tired. I'm just so tired." What would you like to say to those parents, just to wrap up.
Jill Arneson 24:36
Don't be hard on yourself, your fears are totally normal. They're okay and they're valid. Everybody's self-care and things that we're doing for ourselves to try to sleep better are going to look different and that's okay, too. You're just doing your best. If precautions need to be taken that are going to help you sleep better at night, just do it. Don't worry about what anyone else is going to think about you having alarms on your refrigerator or locks screwed in your pantry doors. You just have to do it and survive and hopefully we can get some better sleep. You can get into therapy, and there are so many different ways you can do it. If it's not attainable, there are measures you can take. Ten out of 10, would recommend therapy.
Madeline Cheney 25:22
Yes, I love that so much. I love everything you said. Let me just throw out there, we mentioned this in an episode when I interviewed my therapist way back, I think it was episode 25, I'll put it in the show notes with the right number if that's not true, but my therapist was talking about how almost every therapist out there will reserve a couple of spots for patients who cannot pay and they will do it for free. So, I am willing to bet that if you go to a therapist or if you have to visit several to ask, be like, "I have a child with disabilities and I have a lot of traumas to work through." I just feel like that's going to be something that will really speak to them and I think you could really find success in that and finding a therapist who wants to donate some of their time to help work through this. So, if money is an issue, I just feel like that's a really good option too. So, I guess it wasn't about sleep but we're going to therapy a lot too. Therapy so we can sleep better. Well, thank you so much, Jill. I loved how this episode turned out and I really hope that parents are feeling seen, and maybe have a few ideas up their sleeve of things to try to get better sleep, so thank you.
Jill Arneson 26:35
I would love to hear other people's recommendations or things that they have found that have helped them.
Madeline Cheney 26:41
oin us on Instagram, my account is @The_Rare_Life because we'll have some discussions going on, like getting tips from each other because I think that'd be a great idea, to swap tips and tricks and all the things. All right. Thank you so much!
Jill Arneson 26:59
Madeline Cheney 27:00
Head to the website, The Rare Life Podcast.com to see adorable photos of Jill and her family. You can also follow her and me on Instagram. There are links in the show notes to do that. There are also links in the show notes for the three episodes that we mentioned in the conversation, Episode 25 with my therapist, Rosie, Episode 87 with Karley Henderson about PTSD, and mental health, and for episode 88 about numbing out. Join us next week for season five's finale episode. These are always fun. We'll hear from three listeners who share the impact of season five on them personally, I'll share some exciting updates about the podcast itself, and I'll give you a little peek into what you can expect in the upcoming weeks and months. Don't miss it. See you then.