When Your Mommy-Gut Is Alarming and The Doctors Won’t Listen w/ Tameka Diaz (Rebroadcast)

 

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Summary

Mom Tameka Diaz followed her gut that something was off with her daughter Evely (and had suspicions confirmed) not once, not twice, but three times! In each instance, she faced resistance of medical professionals and felt like she was on trial to prove that her daughter deserved tests and screens. The first time, Evely’s profound heart failure was discovered. The second time, Evely received a sleep study after much resistance, and found she had severe sleep apnea and required surgeries and machines to help her breathe at night. And most recently, they found epilepsy after another round of fighting doctors to give her daughter the tests to look into her concerns.

Because of these experiences, Tameka is passionate in empowering other parents to follow our gut and never stop fighting for them. In this episode, she shares each of these three experiences and gives us advice on fighting for our own medically-complex children. She also speaks to the emotional breaking point she hit from all the stress and the necessity for caring for ourselves, too.  

Episode Transcript

Madeline Cheney  0:00  
Hello friends, Madeline Cheney here. As many of you know, we are currently between seasons five and six. During this time, we are hard at work producing brand new episodes for season six to be kicked off on July 28. In the meantime, a well-loved episode from the archives will be released each of the nine weeks. It is my hope that, whether listening to each of these episodes for the first time or the third time, that you will continue to feel held by this community. We are kicking off the off-season with episode 58: Medical Advocacy with Tameka Diaz, taken from season four. You can find a link to her fantastic story episode that was released right before this one, as well as the episode released immediately following this one, which you'll hear about in the outro in the show notes. Advocating for our children in the medical world can be so draining, emotionally and physically. I feel like when there's so much to worry about and take care of, our most basic needs go to the backburner or even off the stovetop completely. I know when I'm at that level of stress, my eating habits take a nosedive. I either eat like crap and attempt to self soothe or, distracted by everything else, I don't really eat and end up surviving the day on like six apples since they're easy. However, the fuel we give our bodies matter, especially on days we need to advocate for our children at appointments. So, how do we find the bandwidth to feed ourselves properly while juggling everything else? Enter; The Appointment Day Fuel Plan created by a registered dietitian and Rare Mama, Chardell Buchanan, the generous sponsor of today's episode. This free meal plan was created with love from a mom who totally gets what it's like to be in a flurry of survival mode, and what a difference it can make to have balanced meals. The meal plan includes quick and easy ideas for each meal with the chaos of appointment days in mind so you can advocate for your child with as much energy as possible. If you love the idea of an appointment day meal plan as much as I do and have specific questions or issues to work out about your eating habits, your disabled child's eating habits, and/or your family's overall eating habits, you can get a complimentary strategy session with Chardell to see if you could benefit from working one on one with her, longer term. I had a strategy session with Chardell and I came away with so many ideas that were so easy to implement, preventing that realization halfway through the day that I've survived off of apples alone, which feels terrible. I feel so much more energetic when following her advice, so I highly recommend connecting with her. You'll be happy you did. She also has a handful of digital courses available, including one about snacking. You can find links to her courses, the appointment day fuel plan, and the complimentary strategy session in the show notes. A huge thank you, again, to Chardell Buchanan Nutrition for sponsoring this important episode. So, without further ado, let's dive in to Episode 58 With Tameka Diaz.

Tameka Diaz  3:55  
If you, the mom, the caregiver, think that something is wrong, something is probably wrong.

Madeline Cheney  4:04  
Hello, you're listening to The Rare Life. I'm your host, Madeline Cheney. Today I'm thrilled to give you Tameka's special topic episode, all about advocating for our children in a medical setting. Tameka followed her 'mama gut', and something was off not once, not twice, but three times in her daughter's lifetime of five years. After fighting doctors tirelessly to give her testing, they discovered severe sleep apnea the first time, the second time, severe heart failure, and most recently, epilepsy. Tameka is an involuntary pro at this and I was so grateful to her that she was willing to share the story of each of these diagnoses that she advocated to find, and she was willing to give us advice and tips as we advocate for our own children in the medical world. I hope that you learn something new, like I did, and feel validated in the experiences that you've had that are similar to Tameka's, especially if you're feeling dismissed by medical professionals. It happens far too often. The last section of this episode, Tameka shares her story of burnout after said advocacy and all that comes along with medical-momming, and her newfound passion in celebrating every medical mama inch stone and self-care. I feel like this is a great way to sum up what might otherwise be a pretty overwhelming episode with all that we're faced and the burden we carry as we fight for and love our children. I hope that you take some tips from that section too. We can all work on this, I'm sure of it. We have so much to learn. Let's dive in. Hi Tameka, welcome back to the show!

Madeline Cheney  6:14  
Hi! Thank you.

Madeline Cheney  6:15  
So, as you know, we get to talk in this episode all about medical advocacy, and I was so excited when we connected and you said you'd be on the show. I was reading through your posts and you were talking about this topic and I knew we needed to address this because it's so important. A lot of us are facing this situation of needing to advocate for our children all the time, so it's very applicable. In one of your posts you said, "I will always advocate and spread awareness for families who feel unheard when discussing concerns about their children with healthcare professionals."  I would love for you to start out with telling us where that passion comes from and why you care so much about it.

Tameka Diaz  7:01  
It is so hard sometimes. I personally know how frustrating it can be when you have concerns about your child and you feel like you're not being heard, you feel like you're being ignored, and it's so meaningful to me because of what I went through with Evely in getting to her CHD diagnosis. Shortly after Evely was born, after bringing her home and dealing with the shock of her not having eyes, there were certain things as the weeks went on that I began to notice that I thought was strange, just not typical for an infant. Even before saying some of the things out loud, I knew that it sounded crazy but I also felt like something was wrong. We were thrown into all of these different specialty doctor visits with genetics and ophthalmology, and all of these different developmental pediatric folk. In my mind, I'm thinking, "Okay, well, we're already at a certain level of doctors here, so maybe it'll be easier. I'll let them know about my concerns." I started expressing some concerns that I was having with Evely, about how she was very low energy and sleeping a lot. She was just miserable all the time. There wasn't any of the cooing, or the smiles, or the reaching, or anything like that. So, whenever I would bring up these concerns, I would get responses like, "Well, she's blind so she's not going to reach for an object that she can't see." Or, "she's not going to do this," or, "everything for infants is visuals, so auditory doesn't come in until later." And my thing was, if you're telling me that her only struggle is going to be blindness, then developmentally, we shouldn't be having any issues. At this point, a few months ahead, Evely's about three months old, and I had never seen her smile. So, I'm telling them this, and like I said, I know that these aren't real symptoms, so to speak. This isn't me saying, "Oh my gosh, she's sick." Or, "Her skin is turning color," or anything like that but I knew that there was something going on. I told one of the specialty doctors, "Listen, special needs parenting is new to me but parenting is not and there's something deeper here. I'm just not sure what it is." I can remember the moment that I saw Evely smile for the first time, it was in the middle of the night and it wasn't even a true smile but just because her face looked like she was going to give a genuine smile. It was such a big deal. I was in tears, I woke my husband up in the middle of the night and I was like, "Oh my god, she smiled!" So, I'm thinking, by this time, this shouldn't be a big deal. My husband and I decided to go on this trip. Everything had just been so overwhelming since Evely was born, with therapies, with early intervention, with all of these doctor visits, so we went on a little trip to get away but I couldn't truly relax. As moms, we need peace of mind. So, we get there, I'm talking about it the majority of the ride. This is like four hours away from home, we spent a day on the beach and just slept the entire time. When we got back, her little feet were just a tiny bit swollen but you couldn't really tell unless you looked from a certain angle. So, I was like, "You know what, I'm going to call her pediatric doctor." And this is after hours and everything, so I call her pediatrician and got her pediatric doctor on the phone and I was like, "Listen, I'm about to sound really crazy because everybody keeps making me feel like I'm crazy but there's something going on with Evely and I cannot truly relax or get into the state that I need to be in to be on this vacation if I'm worried about this." And this was the first doctor that gave me the response that everybody should have said, which was, "Well, Tameka, if you think something is wrong with Evely then something's probably wrong with her."

Madeline Cheney  7:01  
That's a good answer! I love that doctor.

Tameka Diaz  8:34  
I know, I love him so much. He said, "Okay, this is what we're going to do. Where are you guys?" And I told him we were in Tybee Beach, Georgia. He went online, he said, "The closest hospital to you is in Savannah. I'm going to put in a few orders. Will you take her over there? We'll see what it is. We'll see if it's something that can wait until you guys come home and we'll handle it then. Or if it can't, then we'll just deal with it. We'll go from there." So, we got her loaded up in the car, took her to the hospital, and I remember saying to my husband on the way to the hospital, "This vacation is over, right?" And this was our first day there. We hadn't even spent the first night there yet. And I say, "This vacation is over, I feel it." My husband's like, "Just relax until we have the information." What I did not know, or what I definitely did not expect was for them to tell me Evely was so close to death as she was because Evely did not display any traditional symptoms of heart failure. She didn't turn blue. She didn't sweat or anything like that when she was nursing. They went through this whole list of symptoms that she should have displayed that she never did. And that is why that is so important to me. I will always advocate for those parents because I think it is so important to trust the parents. Yes, we know that we need medical doctors, we need their expertise, we need them, but nobody knows our babies better than us and we don't need a medical degree for that. I think that because we don't have that, we are often overlooked and sometimes, if it comes from certain people, it's overlooked even more. Being a woman of color, I would always feel like I would just have to be so conscious about how I looked, even though I was so exhausted, but just to be taken seriously or just to be listened to at all. That is why this is such a big deal to me, advocacy is so near and dear to my heart because of that and because that wasn't the only time that happened. That was the first time that Evely and I went through that but it wasn't the last time. There should have never been a first time. We shouldn't have to beg for screens, we shouldn't have to beg for exams, we shouldn't have to beg for tests, we should be able to go inside of a facility or a space and say, "Hey, something is going on and I need you to help me get to the bottom of it." And they need to do absolutely that because we went through that whole thing again, getting to epilepsy. Evely was losing skills but because she never did anything that would make them say that it was a major skill, they let it go. And it is a major skill in our world, it was a major skill for her because of so many things that she had to overcome to be able to do those things. I was going to a neurologist, and I was telling them, "Hey, I feel like something is going on because Evely was freestanding and I feel like we were making some really good progress with the physical therapist, and sometimes there would be certain days where Evely would just be a rock star, and then the next day, it would be almost as if she forgot. It was like we were reintroducing things to her over and over and over again." And I was just like, "Something is going on, something deeper." And then it went on with the food, she was eating by mouth, she was still nursing, and those things began to slow. Then we began to use the G-tube more because initially the G-tube was just the tool to be able to help her heal and rest after heart surgeries, so little did we know, she would end up being completely dependent on the G-tube later. One of the things that I still beat myself up about is not just being done with this particular doctor before I was, and just going through the motions with this particular doctor, just repeatedly going back and forth, feeling like I'm having to plead a case. That's what it feels like, it feels like you're on trial and you're having to prove why your child deserves to receive adequate care. It is so ridiculous. That is beyond ridiculous. It burns me up, it makes me so angry. There was one day where I was just like, " I am done," because it got to the point where we were completely starting over as far as skills. I said, "Okay, I can't do this anymore." I take her to another doctor that's three hours away, tell the doctor, "Okay, listen, this is what's been going on. I have not been heard. It feels like I've been screaming to this doctor for so long. I had to beg to have MRIs and I had to beg for a certain testing that I never received," so just telling them my concerns off the top before even doing the test. The doctor said, "Well, it sounds like she could possibly be having seizures." And the thing that made it challenging with Evely is epilepsy doesn't look the same for everybody and I know that when we generally think about epilepsy, we think about body convulsions and we think about those things but that's not what epilepsy looked like for Evely. Evely was having something called focal seizures and the way that you would generally detect focal seizures is through eyes but my child doesn't have eyes so there was no way for us to know, other than her mama was telling them. Her mama was telling them that something was going on. So yeah, she was having seizures and I was like, of course, this is the type of seizure she would have.

Madeline Cheney  20:03  
Make sense, the kind that you can't tell.

Tameka Diaz  20:08  
And that was the thing, we had to learn what the seizures look like for Evely, and this was really, really difficult. We were practically recording her around the clock for the smallest changes, we were watching and re-watching videos constantly of her just being. And we finally figured out what that looks like for her. That is why advocating is so important to me. Trusting your gut is just so important to me because just like Evely's pediatric doctor said, if you, the mom, the caregiver, think that something is wrong, something is probably wrong. And we're all different personality types, so being loud or saying whatever you need to say, isn't always the easiest thing to do and it frustrates me so much because sometimes I just want to be her mom, and sometimes I'm over being a medical mom but it has absolutely nothing to do with her, not in the sense that I would change anything about her, not in a sense that I would do anything differently, just in the sense that I wish that I could just sit back and enjoy her, and she be automatically provided the care that she deserved. And me not having to be an advocate so much, I would love to just be her mom instead of just fighting all the time because that's what I feel like that's what I'm constantly doing. It's either a care provider trying to get what you need, testing, medication or whatever it is, or insurance companies to get medication covered or insurance covered. I feel like we're just always on trial. That's how it feels. It feels like we're always on trial, to prove why our children are deserving of this piece of equipment or this medication or this test, when they should just do it because it's their job.

Madeline Cheney  22:49  
And what's the worst thing that can happen? You do the test and it comes out fine? It really is baffling. Why do you care? We're paying for it or insurance is paying for it, there is no loss for them. There is really no excuse for it. When you talk about how you just want to be Evely's mom, I haven't had those profound experiences you have in advocating but even just the pressure of knowing that your mom gut is so crucial to their care, I feel like it's a lot of pressure. Like, my son, I was pregnant with him and we found out that he had these profound birth defects and that one in particular was really dangerous, and they weren't sure if it would be safer for him to be delivered vaginally or via C-section, and they said, "It's up to you." And I was like, "Well, I mean, you're the doctor, what's safe?" And they're like, "We just really don't know." It's a dangerous thing either way and you need to make the call, and just that kind of pressure, no parent should be given that but here we are. It's just so heavy because we love them so much.

Tameka Diaz  24:00  
You want to make the right decision every single time and when you feel like you don't, in my case I dealt with the neurologist and here we are, this was going on in 2018 and we're here in 2021 and I'm still beating myself up about it because if I had made the decision to just leave and go elsewhere sooner, would she still be eating? Would she be standing still? Would she maybe even take his steps by now even though it's something that doctors say may or may not happen, which is another frustrating thing about having a child that's undiagnosed, they can't tell you anything developmentally. Like, will she walk or talk? "Oh, well, maybe, we don't know. It's probably unlikely," like, "What do you mean, 'probably unlikely'?!" It's just really frustrating, it's a lot of pressure, it's heavy, and motherhood is heavy enough and then you throw in all these other things and now you have to be mom, nurse, and advocate.

Madeline Cheney  25:28  
And I bet that having all of those experiences with her heart and her epilepsy, where you could say, "Wow, I'm so glad that I was in tune with her and knew that these things were happening and I was able to advocate her, and she's alive because of it." That's so amazing but then, on the other side of that to be like, "Oh, but I should have advocated harder, I should have been more aggressive in getting that second opinion sooner, and look at these things that maybe I should be doing." I'm sure that all of those things contribute towards your passion of the importance of advocating and not being ashamed and not being timid and being like, "I'm the mom."

Tameka Diaz  26:10  
Yeah, you let them know, like, "I am the mom," because even with the sleep apnea, it was a very similar situation. This doctor just caved a little sooner than the other doctors did but it was the same thing. When your child has, especially when they have multiple diagnoses, it is so important but they'll just sweep everything away. So, I'm like, here we are, close to four years of no sleeping, and the whole entire time they're saying her sleep rhythm, she doesn't have eyes, her body doesn't produce melatonin naturally so she doesn't know night from day, etc. And I'm like, "Okay, well, even when she does fall asleep, she's not sleeping. Y'all aren't hearing me. I'm not saying that she's up all night and sleeping all day. I'm saying she's not sleeping, which means I'm not sleeping." So, sure enough, she ended up being diagnosed with sleep apnea, and Evely, her airway was collapsing multiple times per hour at night. So, I'm sitting up here like, "What is it going to take? How many times do I have to do this? How many times am I going to have to say, 'Hey, something's wrong,' without you looking at all of her other diagnoses and just not looking at her as a whole." So, here we are, almost two years later, and she's sleeping much better, and she is sleeping at night but I'm still not really able to get the rest that I really need because there's so many times that things have gone on with her and it has been overlooked or missed. I'm just on edge all the time.

Madeline Cheney  28:16  
It's like all on you. Even with these rare syndromes, like overall diagnoses for my son will say, "Oh, well, he should be seen by neurosurgery," or, "He should be seen by EMT." We kind of had these doctors in place where they just sent us after he was released from the NICU, and so to not have any of that, you were discovering each of these areas as they come, no wonder you feel like you can't rest, you're just always waiting for the next thing that you need to catch, and then to fight for it like crazy.

Tameka Diaz  28:46  
Gotta fight for it. Yeah, it's so exhausting and so frustrating but I will fight for her and every other child like her until the end, I will never stop fighting for them because they deserve it. They absolutely deserve it.

Madeline Cheney  29:04  
And that leads really well into our second point of remember your 'why.' So, what would you say about that?

Tameka Diaz  29:12  
Advocating is exhausting and you can burn out on this journey because like I said, you feel it's a constant fight. You get tired of fighting, in any situation. In any type of relationship, you get tired of it. If you have a friend that you're constantly fighting with, you're probably not going to be friends with that person for too long, or spouse or whatever, whatever type of relationship, if there's a strain on it and there's a strain on that relationship for so long, you get tired and you get burnt out but we cannot do that in this situation. We absolutely have to constantly remind ourselves why we do this and who we're doing it for so that we can tap into that strength and be able to keep going, be able to keep moving, be able to keep fighting, just being consistent, just keep going until you get the results that you are satisfied with. Just remembering to be persistent, just patience, just hanging on. And I'm not saying in the process of remembering your 'why' that you're not allowed to be frustrated or any of those things. I'm saying, feel all of those things but once you're done feeling all of those things, you jump right back into the ring and you put your gloves back on, and you get back to fighting because we have to keep fighting for them because they deserve adequate care, they deserve to be able to reach their full potential, no matter what the diagnosis are, no matter what doctors or specialists say what they probably might do. We have to keep going for them. So, when you're feeling tired, like, I'm right there with you, I get it, I get really, really tired too, do whatever you need to do to work through that. If you need to scream or cry or punch something, a punching bag, exercise, or whatever it is that you need to do to work through that moment during that time but just remind yourself who you're fighting for in the first place. I think that keeping that in mind makes the fight just a little bit more doable. You're just like, "Okay, I need to do this because I have to speak up for her and I have to speak up for children like her. I have to speak up for families like ours because I don't want it to be this hard for the next family. I don't want the next family to have to be begging for EEGs and MRIs and things like that, so if I need to go in there and act a little crazy so that the next time they take the next mom a little bit seriously, I'm willing to take one for the team.

Madeline Cheney  32:22  
I love picturing that, too. I didn't even think of it that way because I think every time these stories happen where the doctors actually listen to you and you finally get her heart looked into and find things like that, they'll be like, "Oh my gosh, maybe I should start listening to the parents a little bit more." I'm sure that was really, hopefully, life changing for these doctors that were involved, where they could see that in action.

Tameka Diaz  32:46  
Well, in South Carolina, some of the hospital systems have the online MyChart and I have definitely sent out several letters saying, "Hey, this is what happened and maybe we could have gotten to this sooner if you had taken me seriously. Just, please, in the future, if a parent says that they think something is going on, please listen to them because what we've had to endure, and the fight that we've had to watch our daughter fight, it should not have gone there, it should not have gotten that far." I hope that they actually take heed, that they actually listen and that when parents are going in and expressing concerns, that they are being taken more seriously.

Madeline Cheney  33:43  
I think that's a really good piece of advice, for all of us to be helping each other and pave the way, those kinds of emails are probably uncomfortable to write, especially for those of us that are more soft-spoken or don't like confrontation, might shy away from something like that but that could be really impactful for future parents going through that same system and going through those same doctors, I think that'd be really cool for all of us to try to do. If you are advocating and they're not listening, and you finally get answers to go back to a doctor and say, "Hey, that wasn't okay. Look what happened, you need to listen to other parents." And you can say it in a nice, respectful way but call them out about it.

Tameka Diaz  34:29  
Yeah, I absolutely did that with the neurologist that we were dealing with here. I feel like I did it in a respectable way and that was one of those times where I just really had to give myself that cooling off period before addressing the doctor about it because I don't want to act off of emotion and then my whole point or what I'm trying to do get overshadowed because I was so busy being emotional about it that it became more challenging for my point to get across. So, I had to give myself that cooldown because I was very angry, I'm going to be very honest with you, I was extremely angry with this doctor. What I did was when I had all of the information and I had the medication that Evely would be needing and I had all of the results and stuff, I just basically forwarded it to her and said, "Hey, these are the results that I got when I went to get a second opinion and I just really hope you seeing this will encourage you to listen to the next mom that comes in and says, 'I feel like my child is regressing.'" I hope that the next mom that went to that doctor and expressed any type of concern, I really hope that she was provided the care that her child deserves to receive. So, that's my hope and that is why I have to remember why I'm doing it and remember to try not to be too emotional in these situations.

Madeline Cheney  36:22  
Yeah, I love that so much. I would love to wrap up with our last point of celebrating all the inch stones, which I'm assuming most parents in our realm have heard the word 'inch stone' but just in case, would you like to define that?

Tameka Diaz  36:40  
We always make a big deal about these milestones for typically growing kids but getting to these milestones can look different for children with different challenges and every little bit is always worth celebrating. I think it is so important to remember to celebrate those inch stones, and not even just for our children, for ourselves as well. I think as moms, we deserve to celebrate these inch stones that we are able to overcome, especially as medical moms and as caregivers, there's so much that comes with the journey, and we just kind of get lost in it, and we oftentimes lose ourselves in it because it's so demanding, it's demanding of almost every piece of us. So, we celebrate inch stones with our kids but I also would love to see the trend of medical moms celebrating inch stones, whether one of the things that you really struggle with is separation anxiety, which is something that I have a really hard time with when I'm away from my children, especially Evely because she can't communicate certain things and because of her knees, she requires full care. It's really hard to be away from her, so when you can work up to those moments to do little things for yourself, I think that should be celebrated as well. I think that when we are taking care of little pieces of ourselves, we should definitely take pictures and post them and be happy and proud of ourselves as well because we're working really hard to be able to do those things, we're working really hard to have a night out with a girlfriend or have a coffee. There's so much, this whole ordeal for us to even be able to step outside of the home for a moment to be away from our children. Even without the anxiety, without the depression, without the exhaustion, without the worry, without the fear, without all of those things, it's a whole production just to be away from them because you have to make sure everything is set up just right for them, for you to be away from them. I think that just that in itself, and then you're fighting through all of those other things to have, so if you stepped out and went and had a coffee with your girlfriend or got your nails done or your hair done or had a meal by yourself, do it unapologetically and be proud of yourself and celebrate those medical mom inch stones as well. That's something that I have been trying to do personally, and I was just so tired and then you just get to the point where you're just like, "No, it's just so much for me to do in order to leave so is it even worth it?"

Madeline Cheney  39:54  
It's almost like advocating for yourself, don't forget to advocate for moms!

Tameka Diaz  39:59  
Don't forget to advocate for moms. When I say inch stones are to be celebrated, yes, we celebrate every part of the journey with our children but in this particular conversation, I am speaking about the moms, I'm speaking about the primary caregivers because we keep pouring but we don't feel. I think it's so important to remember to take those moments to feel yourself, to do whatever it is, any little things. And it's baby steps, inch stones. You do it little by little, and you work your way into a point where you can do it, and allow your children to be able to see you taking care of yourself so that they're not like me, in their 30s, trying to figure it out and burn out or end up like me in a doctor's office with inflamed chest walls from the emotional stress. So, I was dealing with these really bad chest pains and it just like everything else, we just kind of went, "Oh, okay, well, that hurt. " And then just kind of ignored it for a while because I have all this other stuff going on, I don't have time to be dealing with this. So, it just kept getting worse and it got to the point where my chest was hurting so bad that I couldn't sleep. I ended up going to the doctor about it and learned that I had inflammation in the chest walls. That was a real eye-opening moment for me. Like, "Okay, you have to take care of yourself. It is not optional." You don't get to say, "I'm just going to pour and pour in that feel."

Madeline Cheney  42:03  
Yeah, it never should be optional. It never really is but until you have something like that happen, or maybe a mental breakdown or something, it kind of feels optional. I think we treat it that way a lot of the time but it really should not be, it should never be optional.

Tameka Diaz  42:19  
I definitely treated it that way. I was just like, "Okay, well, this is just. I'm just going to take care of my kids and that's it." That was a mindset that I really had to let go of, like, "Oh, well, once things get easier, or once certain things on this journey with Evely are a bit smoother, or once..." And then that whole reality of "Sweetheart, this is it. This is your life. You've got to figure this out now because it's affecting you now. You have to take care of yourself now so that you can continue to be mom, caregiver, and all the things." And it's a learning curve. I'm not going to sit up here and act like I had those chest pains and then the next thing you know, I was this self-care guru or something like that. I am still figuring it all out and I'm still working through anxiety when I'm not there. I'm still working through fear, I'm still working through isolation because nobody really understands. It's not like we can just get a babysitter because it's not that easy. It's not that simple. So, I'm still working on that. I'm still learning but for anybody listening that may have not made their first medical mom inch stones in self-care and reflection and all of those things, here it is, if you need permission. Do it because you deserve it. We deserve it. We work so hard, and our kids deserve it. Our kids deserve us to be in a good mental space. Our kids deserve us to be in a good physical space. I can't take care of Evely if I'm not physically 100 percent.

Madeline Cheney  44:36  
Yeah, I love that so much. I feel like that's a really awesome note to end on. We talked a lot about advocating for our children and how important they are and I love that we kind of ended with 'and us' and to celebrate all the progress we make in that and I love your Instagram where you do celebrate those inch stones as a medical mama, not just about your child. I think that's so powerful and I think the more that we all are doing that kind of thing, the more it spreads where we feel permission to not only work on ourselves and to make those inch stones but then to celebrate them, and that's so great. Thank you so much for coming on. You're amazing.

Tameka Diaz  45:23  
Thank you so much. It was so much fun.

Madeline Cheney  45:28  
You can find Tameka talking about advocacy and celebrating her own medical mama inch stones on Instagram @thediazgirls. You can also find me on Instagram sharing episodes and snippets of our life @The_Rare_Life, and I'll put links to both of those in the show notes. So, way back in season two, there was a fantastic episode with mom Jenny McLelland, all about advocating for adjustments to state policies that directly affect our children. And it is not as boring as it sounds, I promise. It really is an intriguing one and a great follow up to this awesome episode about medical advocacy. I'll put a link to that one in the show notes as well if you want to go check it out. Join me next week for a conversation about educational advocacy for our children with IEP expert and coach, Catherine Whitcher. See you then. You can catch another rebroadcasted episode next week.

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Ep. 94: Family + Friends | How to Stay Close When You Feel Worlds Apart w/ Chelsea Denham friends and family https://d3ctxlq1ktw2nl.cloudfront.net/staging/2022-7-9/280101409-22050-1-f469cd665d8bc.m4a

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68: Dipping My Toes into Educational Advocacy

 

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