Empowered by Hope
You want the best possible quality of life for your child regardless of diagnosis or prognosis. Raising a child with medical complexities is often lonely, scary and overwhelming. Join two parents of amazing children with rare medical complexities, Emily K. Whiting and Ashlyn Thompson, to get help and grow with them into empowered advocates for our kids. Here you’ll find a community of support, encouragement, education and resources, equipping you to navigate your child’s medical complexities with hope. To get more personal support, connect with us directly at www.ParentEmpowermentNetwork.org.
Empowered by Hope
Practical Strategies for Balancing Chaos: Prioritizing Tasks and Finding Sanity in Special Needs Parenthood
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Imagine creating an eight-page care document for your in-laws just to ensure your child's complex medical needs are met. That's the reality many parents face, and it's exactly the kind of challenge we're tackling in this episode of Empowered by Hope. Emily, our go-to for all things organization, shares her tried-and-true methods for turning chaos into clarity. We explore the delicate balancing act required to manage medical appointments, household chores, and personal relationships, all while keeping your sanity intact.
When everything feels like it's on fire, how do you decide what to handle first? We discuss the art of prioritizing urgent tasks, emphasizing the importance of slowing down to be more effective. Emily and I delve into the emotional toll of caregiving and why giving yourself grace can be a lifesaver. From differentiating between emergent and non-emergent tasks to accepting and asking for help, we share personal anecdotes and practical strategies to help you keep your head above water.
Finally, we discuss the tools that help us stay organized even with ADHD. A simple notepad from Ashlyn's mom, listing the top three daily priorities, has been a game-changer. We talk about setting realistic goals, managing external pressures, and the pitfalls of procrastination. By the end of the episode, you'll feel empowered and reminded that you're not alone on this journey. Join our community, share your experiences, and together, let's find strength and support in one another.
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Whether you've just been blindsided by your child's diagnosis or you've been in the trenches of their complex medical needs for a while. Empowered by Hope, is here for you, though we wish you didn't know this heartache.
Speaker 2:we're so glad you found us, so together we can walk this journey in hope. Hello, welcome to the Empowered by Hope podcast. We have Ashlyn and Emily, your co-hosts here with Charlotte's Hope Foundation, and today we're going to talk about how to prioritize that crazy to-do list when it feels like everything needs done. Or another way to put it is when you feel like you're caving under the mountain of things that need to be done for your child, because life in general tends to have a lot going on. And then, when you pile on complex medical needs, the to-do list gets to be insanely big, and often in areas that maybe you're new to or maybe that those around you aren't also navigating similar to-do lists, like filling the durable medical equipment order and getting that latest script and calling the doctor to follow up on that test that they need and the lab work and all those things. So we're going to talk about what do you do when?
Speaker 2:Not only are you buried in the I always call it the admin of medical management, because there's so much admin. I wish I could hire an administrator for Charlotte, but that's me and many of you who are on this call get it. But you've got the admin part of the medical management and then you've got the actual medical care for the child right, and it can feel so daunting and exhausting. So Ashlyn actually is the one who presented this topic idea and I of course, love it and latched onto it immediately because I'm all about the to-do list. So I'm curious what made you put this on the topic schedule, ashley?
Speaker 3:Yes. So the reason this is a great example of why we make a good team, because there are things that Emily rocks at doing and me not so much, and then vice versa. This is one of those topics where I would say that Emily is going to be the medalist of the two of us when it comes to organizing. Now, as we were talking before, when it's a full-out crisis or it is an extreme situation, then I can prioritize real fast and really well. But I think that's a lot of people, I think, when things are pretty obvious, what needs to be done, I don't know that that's, I mean, it's still a good skill to have. I don't shut down for the most part, got down for the most part, but when it comes to just the every day, the every week, and you know, you listed, like honestly, just hearing you list those things like back to back to back, started to make me physically, I could feel it in my body like feeling tense, like, oh, all the things, and oh, girl, I just got started.
Speaker 3:Well, no, exactly that's why I was like and dot dot, dot and dot, dot, dot, dot dot.
Speaker 3:And not to mention, you know, people got to eat and there needs to be laundry and there needs to be you know things with the house or with the yard and if you have other kids, and oh yeah, take care of that marriage, that relationship, like all the things that are always going on all the time.
Speaker 3:So I'm going to slow the train down, because I just gave you an inside look at my head and, as you can see, it's not very helpful, because all I did was just make the situation feel very overwhelming. So I want to talk to you about, emily, is how does one find clarity in the chaos and actually create an action plan, and by how does one? I mean how do you do it? Because you do it better than anybody I know, and you do it every week, and I'm not asking you to teach us a masterclass today, but maybe just walk us through what are some things that you have found really help and maybe a couple of things that you found really don't help. You know, whatever comes from this conversation, I know there will be a lot of value.
Speaker 2:Yeah, yeah, I'm going to really work hard to keep this to 15 to 20 minutes, because I could go on and on. So, for those who are listening, if you are in the hospital and you're inpatient with your child, you know that the to-do list looks very different than when you're outpatient, but nevertheless it still can be very overwhelming. I mean, it's just a different kind of overwhelming. It's a parade of specialists coming in and out of the room constantly, or bedside. It's the labs, it's the orders, it's the meds, it's the keeping up with the med schedule, it's the turnover of the different nursing shifts and trying to keep them up to speed of what's going on.
Speaker 2:Meanwhile, you've got the background of insurance and all those things that are happening outside of the hospital but are critical to what's going on inside, right? So then, for those who are outpatient, we're talking about things like actually caring for the child. Maybe they're tube fed, and so you've got to maintain that. Maybe they are on oxygen, wheelchair bound, et cetera, et cetera, and so all that care in Charlotte's case it's a lot of about every two hours there's something that needs done for her care. Though it's not tube feeding and it's not oxygen and it's not wheelchair. It's a lot of other unique things. So many of you listening might relate to that, where it's like maybe not as visible of things that need done, but it's still this constant schedule.
Speaker 2:I actually sorry bit of a tangent I made a schedule for my mother and father-in-law when my husband and I left for the first time together just us, sans children for four days, and I think the document ended up being eight pages long and I was like really intentional to only put what absolutely had to be on there, of like here's how you administer you know, here's how you put on the stoma bag, here's the med schedule, here's the this, here's the that. And I remember thinking like, oh, some of that's for the other two kids that are typically developing and don't have medical complexities, right, and I looked through it and highlighted what was for the other two kids Two lines, two lines. I was like, oh, geez.
Speaker 3:Okay, all right, so anyway Didn't your husband well, really quick, I think this story is funny, didn't you have dan? Your husband look at it and him say oh, no, I think you could include even more detail.
Speaker 2:Yes, yes, because I was like surely I, you know I I tend to be a detailed person shocker. So I was like surely maybe I've gone overboard here, you know, maybe I shouldn't include some of these things. So I handed it to dan with a like red pen and said please, you know this up, and he added a whole nother half page.
Speaker 3:So anyway, and the funny thing is, I don't think Andy would have even gotten through all the eight pages. He would have been like I'm sure you got it all, babe. Good job, right, right, good work A plus.
Speaker 2:Oh my gosh. And that's just and I'm sharing this because many of you can relate that's just for the actual like care of the child, because you know, before I left on vacation, I'm the one making sure all the admin stuff is in line, right? I'm not asking my in-laws to manage the admin stuff. So when I'm talking to admin stuff I'm talking about things like getting the scripts, the medications, the durable medical equipment, the insurance calls, lining up the appointments, all those fun things. So it can feel very heavy, it's very heavy and it is a job in and of itself.
Speaker 2:So first, I think the first thing you got to do and I wrote this down when we first talked about this, ashlyn is reckon with the fact that your life and your to-do list looks different. And I know that sounds so obvious, but sometimes I can find myself in the flurry of the day and the schedule and the mayhem and feeling subconsciously like, oh my gosh, six years ago I was able to keep up with life. What's wrong with me? Or I look around me and I see people not with this crazy to-do list. What's going on? And then it's coming back to the reality of like, my life looks different and that's okay, and so here we go. I told you, this is why I can't go out and get an eight to five job or really any kind of structured, time scheduled job, because this is my job.
Speaker 3:I think it's important to point out that, whatever circumstances you're listening to this, whether you do maintain a full time job or you do not work full-time job, give yourself grace no matter what, because not only are there so many things to do, but the emotional weight that is attached to every action that has to be taken for your child is heavy, and just know that, whatever you're doing, you're doing the best you can, and that is what matters. I just wanted to take a little more. Whether you work whether you're working a corporate job or a work from home job, or your full time job is caring for your child and your family you're doing the best you can child your family. You're doing the best you can, and grace is a huge part of living this life to the fullest. It is an absolute necessity grace for yourself, grace for others, but, once again, grace for yourself. You're going to need it.
Speaker 2:Oh my gosh, so true. So I think that's so spot on, and I just added that as point number four for us to elaborate more. So we've got four things we're going to talk about, and sorry that was a 10 minute intro, but I think it was very relevant. We're going to talk about how to prioritize your to-do list when everything's feeling emergent, and and you know, there's a million ways of how to do it. I'm just going to share what it is that I do, and then we're going to open it up for all of you to weigh in with your comments on the podcast or on social, wherever you're listening to this or wherever you're you're seeing our posts about it. Um, we want to hear how do you manage it? Uh, because my way is just my way. That's not how everybody's going to do it. Um, and then number two is why is slowing down the answer rather than going even faster? I love how you put it. It's not tap dancing, right, going faster. And tap dancing isn't always the answer. In fact, it rarely is.
Speaker 2:Number three, we're going to talk about how and when and where to find help and accept help, and then I just added number four, that what you're doing is the best you can do. And I have to tell myself that often, because, I will admit, there's at least once a week where I have an emotional breakdown, usually to my husband, and I start crying about how much needs done, how much didn't get done, how much could get done, and then I have to be like, okay, but I'm. But she's vertical, I'm vertical, our house is vertical, we aren't on fire, I'm doing the best I can. So we'll come back to that. Okay, so one, how to prioritize your to-do list when everything's feeling like an emergency. Okay, everything feels like an emergency. I think that's the important differentiator it all feels emergent, it all feels urgent. It is not all emergent and urgent and I can confidently tell you that, no matter the situation, everything on your to-do list is not emergent or urgent. There's probably a few things that are emergent or urgent, but not them all.
Speaker 2:So yesterday was a really good example. I woke up to literally 10 voicemails from like three or four different hospital systems, like three or four different hospital systems all wanting answers to this or that, having questions, and I was actually talking to one that was an urgent situation because it was about a surgery that we're having tomorrow and lab work that didn't go through and yada, yada. And she was saying hey, by the way, the anesthesiologist called you, left you a message. You need to call them back. Today and yesterday there were a lot more emergent things going on. I knew I had today to still call that anesthesiologist because surgery is not till Friday, today's Thursday, when we're recording. So I acknowledge the lady's concern. Yep, yep, I'll call him back. I will, but I did not put it on my to-do list for yesterday because I didn't have time for that, because it was not the emergent thing. It was urgent, but it is not emergent. It can happen tomorrow. So I called him this morning, we dealt with the issue, we're good to go, we're ready for Friday.
Speaker 2:So I think one thing is recognizing everything is urgent or urgent, and oftentimes whoever is reaching out to you the durable medical equipment company, the pharmacy, whatever in their mind it's all top priority, because that's what they're doing for you, right, that's their role.
Speaker 2:But you know, within the schedule of your child's needs, is it truly the top priority or can it wait till tomorrow, next week, whatever?
Speaker 2:And so for me what's helped the most is I have kind of a running to-do list for Charlotte's medical care and it's in my agenda that I carry around with me everywhere all the time and it moves from one week to the next and what I'll do, it'll be 20 things that need to happen, right, and I'll schedule out okay, these are the two things that are urgent today, and I'll say, okay, at noon when I take a lunch break, I'm calling this person at, you know whatever, and so the urgent things get done and then I'll try to say, okay, I have a two hour window on this day.
Speaker 2:I'll deal with some of the less urgent things then. And so I think, and having grace with yourself, that like that two hour window might get sucked up with something totally that you didn't suspect is coming, because that happens all the time in this life. That's fine, because it wasn't urgent, it'll happen next week or next time. So I think keeping that running to-do list is really helpful and then just making sure everything is not emergent what is emergent or urgent and do those things. Any thoughts before I keep rambling.
Speaker 3:No, you're good, You're not, you are not rambling. I think that that segued really well into our second point about the idea of slowing down and not moving faster or not trying to force more things to happen. My mom recently got me this little notepad. Because I am notorious is the word, because it's not for a positive thing. So I'm not famous. I'm notorious for scheduling things and forgetting that I scheduled them. Unless it's medical, I'm pretty good with that. But my mom got me this little notepad she found and it literally says top three things I must do today, and so it's just, it's literally like a sticky notes notebook. She's like or just sticky notes, and she's like I want you to try just using this every day. Like, just look at your day in the morning and just literally write down that only three things that must happen if nothing else happens today except those three things, you're good and I have been using that most of the time. Sorry, mom. No, actually I am proud of myself. I'm using it more than I'm not and what I actually really like about it. Maybe this is so. I've talked about being an ADHD parent, like it's an ADHD work partner. Emily's become very well educated on what that means but? But what I love about the top three priorities for the day is one it creates a smaller, narrow, you know, a more narrow focus for me. It also makes it easier to feel like I'm getting wins for my day, because where I was before is I can.
Speaker 3:I like to make lists too. I can make a list and I can make it real, pretty and real, you know, artistic and all the things. But I will lose that list in a matter of 30 minutes. Guarantee it, or I will forget. I'm also famous for every notebook that I see is going to be the notebook that I consistently work from. Well, I've got about no less than 18 notebooks just sitting in my office. No idea which one I like. Why don't I just keep using the same one? No idea. But that top three. What I love is that when I do that, at the end of the day I'm like okay, I got these three things done. And if I didn't get the other things on my list, on my other list, that's somewhere in some notebook in some room. It's okay, because at least I know I got the three most important things done and that's something to celebrate and be proud of and that means I can go to sleep tonight, and I think I liken that to, or tie that to the idea of slowing down. It's focusing on doing less really well, and also, too, at the same time, giving myself grace that not everything is the most important thing in the world.
Speaker 3:Now, I love that you brought up, emily, that the outside influences coming into your life are often going to make you feel that they are or they're going to attempt to. But that's where you have to kind of you know my mom always talks about build a wall around yourself and look over it, so that way you can see what's trying to come in and give yourself that space to decide do I want to let that in or does that need to stay outside of my wall? And yes, when those insurance people are like, let's face it, I I think it's okay to say this. I hope I am not saying don't pay your insurance bills. I am not saying put things off by any means like that, but insurance is always happy to accept your money when they can get it.
Speaker 3:Like those are calls sometimes that as long as we're still getting what we need, I'm comfortable pushing off a little bit. Now, if I need something from insurance, then that becomes a priority. That's different. But when they need something from me, I tend to feel more comfortable pushing that a little further down the list. Yes, yeah, no.
Speaker 2:I yeah, I am the worst at the. I've got seriously what I've got to get better at. I see this is confession time. People do not judge me, but when my mailbox, you know, fills up with all these letters from doctors, I put them in a big bin that is like incoming mail and then, about once every two to three months, I open them and then try to figure out what to do to recover from whatever I should have done two to three months ago. It's really not a good system.
Speaker 3:Don't learn from me on that one. Actually, I really have to get better. I'm pretty sure we did an episode on just open the envelope. Just open the envelope when you get it, because otherwise it grows legs, it grows big scary teeth and it just becomes this fictional thing that is going to terrorize your life. But if you open it, you take away its power and then you're you're back to facing reality and you just deal with it, or or no, or it?
Speaker 2:no, I think you're spot on it does it does grow big hairy legs and scary red eyes. And also then you open it and realize you've been sent to collections and you didn't even know it because you didn't open the last three months of letters. Yes, this happens a lot. And then I call and I'm like I'll just pay it all outright, just get it out at collections. It's not a good system, okay, anyway. So I'm not great with that, but I am really good at organizing to-do lists. So, anyway, I think the other piece of slowing down shoot, I had another point about slowing down and now I forget it and it was really good. It'll come back to me.
Speaker 3:Should we talk about how to get like asking for help and accepting help, because if you feel like you're drowning, then first step is acknowledgement, right, yes, and then maybe the next step is I don't know, maybe that's a good step is to look at your list. What are the things that only you can do and what are things that technically, somebody else could do that won't cause you more stress by them doing it?
Speaker 2:So I have a really good example of accepting help and and leaning on people for the areas they can help. I have, like I said, a bunch of voicemails from people who have called me and I've been outright ignoring the ones that are scheduling for a specific hospital. And here's why it's because I have. I've been very grateful and blessed, thank God, for a care coordinator who's really good at care coordinating and I used to manage it all myself. And now that I have a care coordinator, when I know there's something that she could do, I'm not going to answer the calls about it because you know all the individual departments from specialties are reaching out to me asking to schedule the CT scan, to schedule the MRI, to schedule the neurology testing, blah, blah, blah. And instead of responding to all of them with individual calls, I literally just jumped onto my chart and sent a message to my care coordinator and said, hey, I've gotten calls from these four departments, can you follow up and schedule? So that's a good example of accepting help and farming out those kinds of things that you know. A good example of accepting help and farming out those kinds of things that you know somebody else can do. So if you have a care coordinator. I highly suggest you lean on them heavily Sorry to all those care coordinators out there who are like, but we're drowning. Sorry, we do lean on you heavily, but definitely where? Because they can't do everything for you. There's a lot of things they can't do. So the things they can, let's use them right, let's use brain on them. And then definitely, you know, if you have somebody in your, your court who has offered to help, we have a whole episode about how to accept help. I think it's a critical episode to listen to because we cannot do this life alone. You know, if your mom has offered your aunts, your significant other, your fill in the blank, the answer is always yes. There's always something they can do.
Speaker 2:Like today I had to go get a blood draw for Charlotte. It had to be at 8am because it was for a specific thing that was it doesn't matter. Bottom line is it had to be at 8am. And yesterday I'm thinking through oh my gosh, so I have to get all three kids up, dressed, teeth brushed, fed out the door, half hour drive to get a blood draw. And so you know what I did. I text my aunt who has offered to help this week and I said, hey, are you available? And I know not everybody has an aunt who has offered to help. But, thinking through, what are some things that can alleviate the to-do list? I can have somebody come watch the other two while I run to do this blood draw, just trying to make sure that you're not thinking you have to be the one to do it all, which I am very guilty of, and Ashlyn reminds me often to not feel like I have to be the one that does it all. So any thoughts on that?
Speaker 3:Yes, I think that's good. I think it's just, even if it's as simple as okay, let's say that you're new to this journey and maybe you're the wife in the situation, the mom, and historically you always do the grocery shopping Well, and life is different and you've got a lot going on. It is okay to say hey husband or hey, partner, I need you to do the grocery shopping this week. Here's the list. I'm sending it to you from my phone. Just check it off. If you don't know where things are, use the app. It'll tell you what aisle they're in or ready click, have them delivered.
Speaker 3:There are so many of those services now it's okay to think through your list and think what could I do to make my life easier? So that way, all these other bigger things that do require a lot of my time and focus that I can't farm out to others, I have more ability, more time to do them, and that's just another way to protect your peace. When you have peace, you can have joy. When you have joy, you can enjoy being a parent, because I think that's one of the reasons. Honestly, that's a really big reason for talking about this topic today, and I think we'll end at this. It can feel so easy to just feel like you are in a grinding job Not that you wouldn't do it. You would do anything for your child. We know that, just like we do. But you still have a right and you still should enjoy being a parent and making, you know, making plans, taking steps to simplify your life, slow it down a little bit so that there are still pockets and moments of just enjoying being mom, being dad, being, you know, the grandpa, grandpa, whatever your role is, the caregiver is. You deserve that, and so we hope that some of the tips, some of this conversation today help you think.
Speaker 3:At least start the conversation with yourself, maybe with the other members of your family, on how can we make our lives easier to manage. Because I will tell you, if you've been doing things the hard way forever and it feels like there's no way to change it, you can always hit the reset button. You can always make adjustments, even if you've been doing it a certain way forever. You can start making the new list. You can go get the new notebook. You can start using your iPhone notes and shared notes to schedule tasks. You can start whatever it is. There's no time like the present to make things better for yourself and for your family.
Speaker 3:So we hope this encourages that conversation and we would love to hear from you what do you do in your family to manage the madness and create room for? You know, enjoying life. You know we have to protect that peace and even if it comes in those small pockets at times, it's worth protecting and life is something to be enjoyed and celebrated, not just fought through. So we want to hear from you, let us know in the comments on social, send us a message and also, please, if this episode was helpful to you or or you know somebody whose life is just, they are constantly running in the chaos and the crazy, trying to keep up, please send this, forward, this to them. It's really easy and that way we can just help expand somebody else's support circle and just be there to lift each other up. We would appreciate it.
Speaker 2:Yeah, I just want to circle back to your comment at the beginning. That's really important to to end on that. What you're doing is the best you can be doing, and to keep telling yourself that when you're feeling the whelm of it all, that sure Can you improve, can you do this, can you do that, can you use this trick? Can you, you know, ask for more help? Of course, I'm sure all of us can, yes, but you're also doing the best you can with what you have.
Speaker 2:And so I think remembering to have the grace with yourself that, like you said, ashlyn, we can always hit the reset button and not beat ourselves up, for however we've done it in the past or how it went today, you know what you did the best you could, you showed up the best you could, and now we're going to do it different tomorrow, or do it more intentional, or whatever is needed. So we hope you found this really helpful to realize that not everything is emergent and urgent, and to know that slowing down sometimes is the answer to picking those top three things that have to be done, or whatever your system's going to be, and then, of course, accepting help. So, with that, we can't wait to hear your tips and tricks and we'll talk to you next time. Bye, you are capable, you are equipped and you are not alone. Together, we can do hard things for our children.
Speaker 1:If this episode connected with you and you want to hear more be sure to hit the subscribe button. We would also love to learn about your personal journey and how we can support you. Reach out to us at contact at charlotteshopefoundationorg.
Speaker 2:And last but not, least if you know of someone who could benefit from this podcast, please share. Hope is power.
