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
Mindful Parenting: Navigating Complex Medical Needs and Finding Joy in the Moment
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Discover the transformative power of living in the moment as we navigate the intricate world of parenting children with complex medical needs. You'll hear Ashlyn's heartfelt account of her daughter Emery's remarkable journey through a tough post-surgery recovery in England. Emery's amazing ability to bounce back from pain to joy teaches us valuable lessons about mindfulness, and we'll discuss how children naturally embrace this state of being and how, unfortunately, adults can often disrupt this instinct.
We'll take you on a family beach trip where medical challenges, like Charlotte's recent surgery and high risk for UTIs, initially threatened to overshadow the fun. Learn how meticulous planning, effective communication, and creating a supportive team environment can turn potentially stressful situations into memorable and joyful experiences. This discussion is packed with practical advice for balancing medical concerns and family enjoyment, helping you to acknowledge fears while staying present in the moment.
Finally, we'll share actionable strategies for integrating mindfulness into your daily routine to enhance well-being. From starting your day without reaching for your phone to short YouTube meditations, deep breathing exercises, and grounding techniques, these tips are designed to keep you centered despite life's chaos. We also delve into personal self-care practices, like favorite meditation techniques and sensory experiences, to foster calm and joy. Join our community of support and share your stories with us at contact@charlotteshopefoundation.org.
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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.
Speaker 1: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.
Speaker 3:Hello everyone, welcome to the Empowered by Hope podcast. It's your co-host, ashlyn, and Emily here today, and we are happy to have you join us in a conversation about what does it mean to live in the moment, and how do we do that with our children, especially when they are facing medical complexities, challenges in their lives? Because it's not your average run of the-the-mill experience as a family and Emily and I were talking about this recently and, honestly, it probably comes up quite a bit, because one of the lessons that I have learned from Emery I really love to share and truthfully reflect on for myself is this whole idea, this concept of living in the moment. What does that mean? What does it look like?
Speaker 3:And last year, when we were in England, if you followed us for a while, you know that we spent about six weeks there over in London for Emory to have a surgery that was not available in the US and, long story short, surgery seems to have been a great success, but the recovery was really really, really hard and we experienced more road bumps than we anticipated, which, looking back, we should have anticipated because that's how most recoveries go. But Emory experienced what are known as bladder spasms as a result of her surgery and they are debilitating when they happen. I'm told that they feel a lot like labor contractions, really intense ones, without any medication, and she experienced those countless times a day and at night for about four to five weeks. And she was two right yeah, it was right before her second birthday.
Speaker 2:Yeah.
Speaker 3:But the amazing thing that happened and I remember just watching it happen in front of me, almost like it was somebody else's life that I was watching when Emery would start to spasm, she would literally throw herself to the ground and she would roll around and be moving into all these different positions just trying to escape the pain and, as you can imagine, that was really really hard and really awful to watch. But we learned quickly that we had to let her just move, because if we tried to hold her, that made it worse for her. But what she would do is, after she would get through those spasms, I kid you not she would just pop right back up sometimes take a breath, sometimes maybe need a hug or need a moment, and then after that she would literally say I want to go play, or let's go to the park, or I want to swing again, or I want to color, or Cole Cole which is what she calls her big brother let's dance. And she did this so many times. And I just remember thinking this is what it means to be in the moment, to literally let yourself experience what is happening and only be in that space. And as soon as it's over, move on to that next moment, because she didn't walk around being scared and dreading the next spasm that was coming, like I was. I was dreading them for a while. Instead, she let it be bad, she let it hurt, and then she'd move on, and then she would have the best time. And then, when spasms would hit again, we'd bad, she let it hurt, and then she'd move on, and then she would have the best time. And then, when spasms would hit again, we'd stop, she'd work through them, we would give her the time she needed to recover, and then, next thing, you know, we're off to the British Museum or we're off to see the ocean for the first time, with something we got to do while we were there.
Speaker 3:And that lesson has stuck with me more than anything, I think, from that trip. And so what Emily and I were talking about would be some good things to cover today are what does it actually mean to live in the moment when we're on this journey? What does that mean for both our children and ourselves? And then, what are ways to actually do that? Or, more so, how do you pull yourself back into the moment when you lose your sense of it underneath you that want to either pull you back to the past to relive a trauma, or want to shove you ahead to dread the future, or something that you're scared of, that's unknown, and the reality is we have no control over that time and we really can only be in the moment. But it takes a lot of work to do that, right, Emily? Yes, very much so.
Speaker 4:We're going to talk about some ways to do that, speaking of living in the moment. Yes, living in the moment I was just saying speaking of living in the moment. My dog's going bananas in the background and our audio is not doing a great job, but we are living in the moment in this podcast and we are charging on.
Speaker 3:We are accepting what we can control and we are letting go of what we cannot. We've had some practice.
Speaker 4:Now my children are screaming in the background, so anyway, it's just white noise for us at this point, right, all right.
Speaker 3:So, emily, in your opinion, why does it matter to practice mindfulness for the sake of our children, like as the parent? Why do you think it matters for our children to show them how we ourselves live in the today can be present?
Speaker 4:You know what, as interesting as you asked that question, it has made me think. I think to your point in your story about Emory. Kids know how to live in the moment from the beginning and we accidentally teach them how not to.
Speaker 4:In no way am I trying to make any parent feel guilty, because I'm pointing the finger at myself right now Because, as you were saying that, I was thinking, oh my gosh, I remember Charlotte as a two, three-year-old just being so in the moment, and now she's six and we're having to help coach her through anxiety of when the next bout of pain is going to come. But that wasn't the case when she was two or three and she had more pain then. And so, anyway, I think I mean I'd be curious what a psychologist would say about this, but from my lived experience, it seems that kids know this innately. As they get older, we all start struggling with not living in the moment. Whether we teach them that or that's just the natural progression of the development of the brain, I don't know. The point is, I think it really matters for us to learn it, because when we are so fixated, worrying on what the future is going to hold, what could possibly happen, how is this going to go, our children feed off of that and they know it. And also, not only do they feed off of it and start feeling the anxiety and the fear themselves, but also then they and we are robbed of the moment. So yesterday was such a good example in our own lives of this very thing, where our day just got totally flipped on its head and I won't go into details because it doesn't matter right now, but medical things gone awry over and over and over all day long. Nothing life-threatening, but very inconvenient, very frustrating logistical issues. And then yesterday evening I'm sitting there with the kids and they are playing in the life-threatening but very inconvenient, very frustrating logistical issues. And then yesterday evening I'm sitting there with the kids and they are playing in the bounce house having a great time and my brain is still thinking about how frustrating the day went. And I had to remind myself. They're all giggling right now and they see me sitting here stewing in a chair. I've got to. You know we'll deal with what happened today later. Right now I'm going to be right here with these kids and, man, it ended up being such a fun 15 minutes of giggling and running around and being silly. So it makes such a difference.
Speaker 4:And I hear from so many parents that I talk to worry of the future, right, worry especially with the moms I talk about, talk with who are dealing with the same disease that Charlotte has so heart of car syndrome, rightfully and understandably so. There's a lot of worry of what does the future hold? Will they be able to walk, will they this, will they that? And those are all valid fears and at the same time, so in no way are Ashley and I saying you shouldn't fear, that's not what we're saying, because you're going to fear, you're going to have fears. But living in the moment is acknowledging that fear and then coming back to say and at this moment I'm choosing to be mindful of what's happening right now. So it matters a great deal because it's affecting our ability to enjoy what's happening right in front of us and it's also affecting our children, as they feed off of our emotional space that we're in. I agree.
Speaker 3:I think it also affects how we make those decisions for things in the future. Yeah, when we're so far ahead, when we can kind of lose our grasp on reality, what things are right now, and fear has a chokehold on you right, or it can and when you face that fear, when you actually acknowledge what the real fear is, then I feel like it's easier to assess it and and understand what is truly scaring you underneath. That Is it something like if the worst case does happen, how can you handle it? Sometimes just making yourself walk through all those scenarios is the best way to be able to pack it up for a while and then come back to the present Because you can't just ignore it.
Speaker 3:We can't live as an ostrich with our head in the sand. I understand that. Live as an ostrich with our head in the sand. I understand that. I don't want anybody to think we're saying like, just don't worry about what's coming ahead, because well, that's a lot of what being an advocate is it's planning for what's going to come ahead. So by no means are we saying don't do that. But the the idea is it's. It is a dance that you have to learn right how to acknowledge what is needed ahead, using information gained from what has happened, but yet be able to experience what is happening now. I talked about when Emery's last surgery was coming up. I had to really work hard to enjoy the weeks leading up to the surgery and that sounds like a silly sentence even now to say out loud, but it's very true.
Speaker 4:It does not sound silly to anyone who has experienced pediatric surgery. I'm like hearing it to myself.
Speaker 3:It sounds like telling myself I had to work hard to enjoy time. That's what sounds funny to me, I guess, sure, but it is something. It does require that intention. It does require making a choice, and it wasn't always an easy one, and I didn't win that. I didn't always make the choice I wanted to every day, and that's okay, yeah.
Speaker 3:But at least more than not, I was able to enjoy the time. And you know, one of the things I did, knowing that that big, scary surgery was coming up, was we infused our time leading up to it with as many fun things that we could do. That I knew she wouldn't be able to do once she had surgery, or at least not for a while, and that was a way to experience being in the moment and creating a safe space for us to just be present and be thankful and have fun, when I knew what lied ahead was not going to be much fun. Emily has a really good example that I think is really important to share with our listeners. For another way to think about this. We were talking about when you took the kids to the beach last summer, what that entailed, how you were able to enjoy being at the beach while also preparing for things that could have totally stolen your joy for the whole vacation.
Speaker 4:Yeah, so we were. We had a week vacation at the beach scheduled with several different families. We had a big beach house. It was something we'd been looking forward to over a year and Charlotte had had a surgery looking forward to over a year and Charlotte had had a surgery probably eight months before, that gave her a stoma and just generally a very high risk for UTI. And so we went to meet the surgeon literally the week before our vacation and he informed me whether he told me this beforehand. I'm sure he did and I, just in the midst of all of it, didn't absorb it or what he said.
Speaker 4:Charlotte can't go in the ocean and in fact, beyond letting it hit her feet, it should not. She should not go any like, not even above her knees, because she's so high risk and the germs she can get from an ocean we don't, we may not be able to treat it. And so I walked away from that appointment having the fear of God in me that I'm like I'm taking my child to the beach and she's going to die from this raging UTI. I mean I seriously was a mess. I was freaking out like how do we undo this and how do I take her to the beach and tell her she can't swim. Also, our house that we had booked had a pool, which also was high risk for swimming or for UTI not as high risk, but still high enough. And uh, and Charlotte loves to swim, she is a fish, and so, and that girl, like she knows how to live in the moment, she knows how to embrace it, because it might not be here tomorrow. And so I was freaking out for like 24 hours and then I I kind of came to this realization of we're going to the beach, the decision's made, flights are booked, houses held, all the fun things. The kids have been looking forward to this for months.
Speaker 4:But in order for us to enjoy it at all and to be in the moment, we have to look this fear head on and come up with a plan that acknowledges the real risk, the very real risk, of this being a, you know, a very dangerous possible vacation. So my husband and I literally sat down and we made a plan like, okay, well, we can't control a lot of things, but we can prep Charlotte that we're not going to you know, she's not going to go into the ocean, but she can play in the sand, she can get her feet wet and she can swim in the pool. We're going to go into the ocean but she can play in the sand, she can get her feet wet and she can swim in the pool. We're going to contact the house renter person and we're going to ask them to extra, extra, extra clean the pool. And then we put together a plan of okay, we're going to bag the stoma when she swims. She only gets to swim for 30 minutes at a time. Then we have to take breaks.
Speaker 4:We we just really made a plan of that in order to be able to enjoy vacation and not freak out the whole time that she's going to have this raging UTI. At the end. We need a plan. So it was like a five-step plan. And then we messaged it out to everybody who was going to the house, because you know, when you're in a big house with a bunch of kids, everybody kind of starts taking care of everybody else's kids. And we were like we need everybody on board with this plan to help us out. And so we let everybody know and we said you know, whoever's at the pool needs to help us monitor this, whoever's at the ocean, don't let Charlotte go in, whatever.
Speaker 4:And we did end up still getting a UTI, but it was a manageable one that we could treat, and we were able to enjoy the vacation and not be. I was able to just take a deep breath, knowing we've done all that we can and so it's going to be what it is. And so, you know, I think it's. It's taking into consideration, of course, all the medical limitations and also needing to live and trying to figure out how do I balance that, address the fear and still be in the moment. So I love that.
Speaker 3:I think I also love how like I didn't realize that you sent it out to everybody else who was going to be in the house, and I absolutely love that. That's such a advocate move in all the best ways and it just it too. It helped kind of take the pressure off to or it it shared the responsibility and then you knew you had a team behind you, behind Charlotte, supporting you all and also helping. Like once again, just knowing that you had that support is another way to make it easier to be in the moment, because it wasn't all on you. You had other eyes watching, you had their support and you knew that everybody was Team Charlotte and Team Charlotte's health.
Speaker 4:It's funny you say that because that's what everybody responded to the text. Team Charlotte, we've got this.
Speaker 3:I love that.
Speaker 4:It was like I went from this sob fest for the last 24 hours of freaking out and just pure fear to okay, we have a plan. It's the best we're going to do. We're all on Team Charlotte, let's go have fun, you know.
Speaker 4:And another part of it was we looked up what's the. Actually, I asked the surgeon okay, if we do have an issue down there, who do you want me to go to? You know, here's the closest pediatric hospitals, who do I go to? And so they prepped me with that. We didn't end up having to do that, thank God. But, um, but I think you know a lot of living in the moment is being able to acknowledge, and we're going to talk about mindfulness acknowledge what is it that's holding me up from being in the moment? What am I worried about? And then either say, okay, well, I'm going to literally write it in my calendar, I'm going to think about that when the kids are down for a nap, or whatever. Or it's like okay, well, we're going to make a plan to address that, but right now my kids are giggling, playing in the sprinkler, so that's what we're going to do, or whatever.
Speaker 3:That's wonderful. Well, I think, to wrap this conversation up, I think it would be helpful. We wanted to leave you all with a couple examples of what are some, just some really basic, simple ways to help make mindfulness a part of your day, and whether that's you know, you're at home, you're in the trenches doing the daily grind or you're even in the hospital, and so a couple of examples that I wanted to share is one thing and I know that even I have had to work on this, but I have gotten a lot better about it last few months is the start of your day matters so much. Like literally the first thing you do when you wake up will impact what you do the rest of the day. So my first recommendation is do not reach for your phone first thing. It is so easy to want to get on your phone, and whether it's scrolling, let's face it, scrolling through social, looking at alerts, checking emails, looking at what the appointments are for the day, that schedule, I'm not saying don't get to those things, that's fine. But even when you wake up, just doing a really quick, quick check-in with yourself Okay, I'm awake. Where did my thoughts go to first? How am I feeling physically? How am I feeling emotionally, spiritually, whatever you choose.
Speaker 3:Another thing that I like to do is sometimes I'm in the mood for a mental check-in. Sometimes I'm like I don't want to go near that, so sometimes I just am like, nope, not my thing. So instead, what I'll do is list, okay, what are five things that I'm grateful for, am like, nope, not my thing. So instead, what I'll do is list, okay, what are five things that I'm grateful for, and like rapid fire, like I'm thinking. You know, sometimes it's as simple as I'm thankful that I have air to breathe, I'm thankful that I'm in my bed, I'm thankful that I live in a safe community, I'm thankful that my child is in her room, I'm thankful that I'm recording a podcast today with Emily, and I know that's going to make me happy when I see her.
Speaker 3:Just, you know whatever it is, but literally just starting the day out with those positive thoughts, just try it. If you don't do it already, just give it a shot. A couple other things are of you're feeling overwhelmed YouTube, five minute meditation, mindfulness. It's just let somebody do the work for you. It's so easy, that's awesome. I can't recommend them enough. Anything that you like to do, emily.
Speaker 4:I can't recommend them enough. Anything that you like to do, emily, I love your thoughts about the morning I have been having to work on not looking at my phone, first thing, because I will say the minute I do that my brain just transitions straight to what needs done, instead of just like, oh, I'm going to enjoy my kids while they're waking up, or even if I'm in the hospital, not looking at your phone right away to check who texts you to see how your kid's doing, to just be like, okay, I see my kid, they're breathing. I'm grateful for that.
Speaker 4:For me, actually, one thing I've really tried to do and I probably remember to do it three times out of the seven in a week but when I would open my eyes to say, good morning Jesus, how are you? I know you're good, you're always good, I'm good, you know, and just like, just acknowledge him and just basically just a two second invitation of you know, be with me today. And that has that, when I do remember to do that, it makes a big difference because it's like a big deep breath in the morning of it's not, it's not about me, it's not up to me, I'm good, we're good.
Speaker 3:And you're also not doing it alone.
Speaker 4:And I'm not doing it alone, exactly, yeah. Yeah, I think another thing is just like. There's been times well, yesterday was a good example where I was about to lose my ever loving mind and, just you know, we were constantly teaching Charlotte how to take deep breaths when she's anxious, and I had to just remind myself okay, I've been teaching her. Why don't I do it, you know? So stopping taking a few deep breaths and going okay, I'm really frustrated about X, y, z, I can't change it. I've done what I can to control or manage or fix or improve whatever, and so that is that, moving on. Yeah, I think part of living in the moment is just being able to recognize when you're not and then taking it. Sometimes it's literally a five second like whew, okay, all right, you know, I don't know if that's very helpful, but it is helpful.
Speaker 3:It is helpful, and so that made me think. There's one more thing that I had written down that I wanted to share, because this is another great one to do, not only with yourself, but I had somebody taught me to do this with my kids, and I've been seeing a really big difference. So Cole can get really, really anxious, like big, big, big feelings when he's anxious, and I probably can too. But what this teacher taught us to do is okay when he's let's say, he's having to freak out, super upset, overwhelmed or whatever. All right, cole, tell me three things that you can see right now. Okay, say them out loud. All right, tell me three things that you can literally feel, like. Do you feel your shirt on your body? Do you feel the couch that you're sitting on? Do you feel my hand in your hand? And then what are three things you can hear right now?
Speaker 3:And you know, going through the senses like that, I have found that there've been a couple of times where I've been having a moment and I've tried it, and it's such a good way to come back into your body, and when you're back in your body, you're back in the moment, and so that's a really fun one to do, and I definitely plan on trying that with Emory when we're doing medical things.
Speaker 3:We'll practice before we go do the next medical procedure. But I think that that would be a really good one to do with kids when they're in hospital, at doctor's appointments, things like that, when the nerves are high, just reminding them that like hey, you're here, you're still yourself, it's not just everything happening around you, let's focus on just you, let's get back to you. And so I love that little trick and have definitely seen cole's meltdowns, or his, his intense moments, wind down much easier using that little trick so I know that I would love to and emily you, I'm sure I know we would both love to hear maybe some of the things that you yourself do like.
Speaker 3:Or do you have a favorite meditation? Or is there a candle scent candle you like to light in, a scent that helps you feel calmer? I don't know. Maybe there's a certain wine you'd recommend you like you know, have a glass of wine to calm yourself down.
Speaker 3:We will take those, those recommendations, yeah, just let us know what you're doing for yourself or if you have any questions. Maybe you're struggling and you're looking for some ideas. Let's share those together this week on our social and see if we can help each other all find a little bit more joy in the day. I love it. All right, have a great day everyone.
Speaker 2:You are capable, you are equipped and you are not alone. Together, we can do hard things for our children.
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Speaker 2:We would also love to learn about your personal journey and how we can support you.
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