Meet Amazing with Sara England

Jen Lansink:  Before we get into today's episode, I wanted to let you know that I survived and Teal survive. During the school year of 2021 and 2022. We had a Spanish exchange students who spent 10 months with us. I interviewed Candela a while back for a "What's it like" episode so if you want to know more about that experience, check that out. Any-hoos she graduated from high school on Friday, and Alex and I for the first time ever left Teal for more than two nights and for the first time we flew away from her and left the country and for the first time I forgot my recording equipment which is why this recording is a little wonky but the actual interview is not. So to make it all even more exciting Teal got pretty sick with a nasty cold before we left and missed school for three of the five days last week. And to top it off, she gave it to me. So why do I start today's episode with all of that? Well, first and foremost, this was an exceptionally valuable time away for Alex and me. We rekindled some neglected emotions. We reconnected on many things we used to talk about pre Teal we reignited a love of new things. And we reshaped some of the views we have been carrying around with us this time together was so overdue, it would have been easy, so easy to just simply say oh, let's just have one of us go and everything's easier. You go I'll stay here or let's not add a day for just us and just keep it to the bare minimum time away. And I could have joined a day late to make sure to was completely over a cold so many options to change the intentions which would have eventually changed the outcome. So I say this to remind you that while things can get hard or complicated or sticky or delayed, it is important to care for yourself and for your relationship with your partner. If you're lucky enough to have one. 

JL: All right, Sara, England in today's meet amazing episode really highlights how important it is to make those tough decisions for self care. She talks about layering on of habits and not getting overloaded by trying to make too many changes all at once, which is a really good concept and really how that 20 minute pause for yourself for the self care of any kind can be something that keeps you connected with your partner it makes you a better parents, a better daughter etc. And it can be really one of the most important things that you do all day is take up 20 minutes. So I hope you enjoy and let me know what you think. 

JL: I am with Sara England today. And she has graciously joined us to be part of the meet amazing series that we're doing again and I wanted to quickly introduce you to this amazing woman and then we're gonna have her tell us her story and give us all sorts of inspiring things because about what she's inspiring. So here we go. Sara England is a proud mom of three kids Maddie who's nine Noah who's six and Sam, who is four. At birth. Sam was considered a micro preemie born at only 25 weeks, and he also has Down syndrome. Sara is a nurse by trade, but that title quickly changed to stay at home mom after she had kids. Raising three kids, one of which was special needs turned Sara's whole world into a whirlwind. For the past five years Sara has been a true advocate not only for her own children, but for all children. She started sharing all the real and raw moments of raising a child with special needs and Sara loves to share her story. By helping other special needs moms go from just surviving to thriving. In her course made just for moms like herself. Sara is married to pat and is a lover of all things coffee, wine and wellness. Sara and Pat live in the Houston area. Thank you so much for joining us, Sara. 

Sara England: Thank you so much for having me. I'm so excited. 

JL: Okay, is there anything better than coffee, wine and wellness?

SE: I don't wanna say daily because I'm trying not to drink wine every day. 

JL: I know me too!

SE: I'm really trying I'm really trying. No, but it's it's like my trio of things that keep me make me happy. I guess you could say 

JL: So true. I know. I just recently went to a naturopath and got all my bloodwork done. And about a month before it I started like trying to take like three days off a week not drinking wine and truly I don't drink it because I need it. I drink it because I really just like the taste of wine. I like having wine with my dinner and I just do and so when I sat there to get my my blood test results, I was like how's the liver? Let's talk about you. Not me. Jeez, Louise. Talk about me. Okay, so three kids, three kids. I love how you really do kind of embrace the magic and the mess of what we talk about. You know, we before we started recording, we just had this good conversation about it's hard and it's not all peaches and cream and it's not all magic. So will you talk me through when you found out first of all 25 weeks Teal was 32 and she was two pounds. How big was Sam? 

SE: So he was one pound. 

JL: Holy jeeze will you talk us through that? 

SE: Yes. So we had a prenatal diagnosis with him so maybe I should back up a little backup. So it was really difficult for my husband and I to have kids I had a miscarriage before my daughter and then two before my Son, Noah was born. And so it was just a lot and so after he was finally here and I was trying to heal myself and become a mom of two kids and we can get into that whole because that's really what started me taking care of myself was hitting rock bottom. Because when you can't get pregnant or you're having trouble and you're struggling with infertility, like it really messed with my just everything because it was so difficult. It was such a difficult journey. And so once he was here, I was like I can't do this again. Like we were done with two kids. 

JL: You were referencing Noah, you were done. Okay, 

SE: After our second you know, when you have a plan, they say like laughs God laughs at you or something, whatever that quote is, I'm like, because basically we had a plan to have no more children. My husband actually had a vasectomy scheduled in like a week later we found out I was pregnant. A week after my son's first birthday. So Noah and Sam and because he was born so early, they're like 16 almost exactly 17 months apart. Not only did I not know I was pregnant, even though he's been a miracle from the start because I had always in order to have a successful pregnancy, I've got a slew of things like the special kind of fully editable binocs injections, like the ones that are injections and as you all know, the thing is, I wasn't doing any of that. And I didn't find out I was pregnant till seven or eight weeks and usually that is the time that I would have always had miscarried. So the fact that I go to the doctor, our fertility doctor because I found out I was pregnant. I immediately called her and she's like, come in immediately. She I started the shots immediately. And she was like, everything was amazing. It's a miracle. And so she's like, just we're gonna start doing all the things we've always done because that's just what we're gonna do. And so, you know, they essentially just started from there at between 10 and 12 weeks, it was like, by the time I went back, I was like, Okay, well, now you can go see me. I was like, I'm really now almost 12 weeks, right? Like, how is this happening? Right. So I saw her and essentially, this is how naive I was six years ago right? That's September we went to the doctor and they do the bloodwork and I it's like I never even thought twice that the genetic testing told you the genetics I was like I'm gonna know if it's a boy or girl cuz I'm either keeping girl clothes or boy clothes we want to teach and I'm a planner and I've got to know. And so about four or five days after those tests I'll never forget I was sitting on my couch my husband traveling I was watching Gilmore Girls and our OB calls me and she calls me and she's like, Sara, I have to tell you some things like your bloodwork came back, and I'm gonna say was like a 50%- 56%, I think percent chance that your child has a chromosomal disorder. And I was like, what does that mean? And she's like, well, it's could be but he has Down syndrome. And I was like, this is a joke, right? I mean, in every sense of the word, your world comes crashing down. Everything that I believed or thought or found safety in was gone. I had a 14 month old, essentially is what he was or 13 months at the time at a 13 month old and I had a three year old and I was like, I can't be a special needs mom. I know nothing about this. This is this doesn't happen to us, you know? And so I remember having to call my husband and tell him this and so everything just happens in slow motion because after that we get pushed to a maternal fetal medicine place. We go in for the nuchal translucency where they measure the thickness on the back of the neck and of course his was high and that was really the only marker that he had at the time. But apparently, that was so off putting to these doctors that they told us that it wasn't a healthy pregnancy. If I carried him to term he would probably be stillborn. Like very false information. I'm not gonna say the name of the hospital but it's a pretty big one here in Houston. So for them to give somebody who's a prior nurse who was already medically informed of things and I was like so thrown off and you know like here we saw on the monitor this 13-14 week old you know, arms and legs just to get get heartbeat. Heartbeat had always been the thing that was either not there with my miscarriages or was there and gone away but there he was alive. And kicking. He just had the thickness on the back of his neck. And I was like, I don't understand how does this mean? And so it like they they're like, Well, we think he's going to develop hydrops and I understand that that is you know, it can be a fatal condition for some kids, some kids, some babies are treated, you know, at birth and then they grow out of that but you know, the nursing me was devastated because you're telling me this, why is this doctor telling me this? So we got referred to another maternal fetal medicine doctor, and he just he was just like, you know, this isn't a death sentence. But if you want more information and you want a confirmation of diagnosis, he's like, everything else looks fine with your pregnancy. He's measuring the baby. He's measuring small, but other than that, you know, like, there was nothing at the time. It's still too early to really know, but they're like, everything else was fine. Right. And so, you know, he continued to monitor me and he did decide to do a, an amniocentesis, because again, I'm a person that has to know like, I couldn't spend so much time waiting, and yes or no, not no, you know, and it didn't change anything we were keeping. You know, it was never a thought in my mind to not keep this pregnancy. It was just more like I need to read and I need to plan and I need to be informed and I need to talk to other women who are in this space. Like that's kind of how I am like when I need help like I am a seeker of information and somebody who's going through this like someone gives me hope someone give me a story. Someone give me some perspective. And so essentially we found out that he would have Down syndrome. And then from then on the pregnancy was honestly really uneventful. He doesn't he didn't have a heart condition. He didn't have a lot of the other things that were usually really big markers. I went in on Christmas Eve to have my because I was going every two weeks for like checkups with him. I went out on Christmas Eve and everything was fine. And within what 10 days he was born. Yeah, he was born on January 4, and the only thing they can tell me my placenta failed, and so they think it was part of the clotting thing. But my placenta never failed with my other kids. It was completely healthy. And I know placenta like just the way that it's made when a child has Down syndrome. It's not it's probably I don't want to say unhealthy because I just I don't like the way that sounds but you know, like, it's different, right? The genetic makeup of it is different. So maybe it wasn't as thriving as they thought but when I felt a decrease movement, and my OB was like, you know, you have three kids you know hes your third so you're just busy. I was like, but it feels like it feels different. And so I went in and there was no amniotic fluid. I wasn't leaking my placenta just not making it and he was born with like my amniotic sac literally like to peel it off of his and he's a miracle like if I had waited even six more hours to go in. I don't know if he would have made it because he was delivered immediately. They gave me steroids but he they didn't have really have time to work because he just needed to come out and which is wild and that's his enterance in to the world just like everything else. With him. Like it's like, 'Bam I'm here, now what you're gonna do.' Right? And I think that whole experience is so interesting. Like who I was before him was very much like I like to control things. I had a plan. I always want to go to nursing school. So I went to nursing school, I had things all lined out and that's my personality. And I always joke it's I mean I haven't completely done a 180 I had to learn how to relinquish control and really see life from a totally new lens. The way that things used to be and the way I used to be just aren't conducive to raising a child that has a disability. It just isn't and in every shape of the word he's changed our lives and some ways it's hard or a whole lot harder. In some ways. It's better than it would have been, you know, in any other way but I just think that like, I can't imagine him not being here, you know, family if somebody had asked me like if you could take away Down syndrome, would you I was like no, but I would take I would give anything for him not to be micro premie. 100% I love that He has Down Syndrome I don't love all the things that come with Down Syndrome. I love if he'd be able to feed himself and eat some real food like a whole other thing. But like his personality and his little spirit and his if I could bottle up his confidence and give it to my nine year old I mean are world. He's like he lives his best life every day. And it's just like the most amazing thing to see. But the premie is like the fact that I couldn't carry him and give him that is hard for me like that feels like I could have controlled that even though I couldn't but it's it's so hard. Because it's like watching him grow on the outside. I was like this is why like every day every hour counts when you're pregnant because so much is still developing and it was just so wild. Like his eyes were still fused when he was born. Like watching his eyes open. Like learning how to suck they do that on the inside, right? So they to do all of these things medically induced all of these things with him that are just innate that your bodies do whenever we're pregnant, you know, and so it's just it was such oh my god, he was such a wild experience. 

JL: Sounds like it well, you know, yeah, huge roller coaster. A lot of your story is just like hitting my heart. I had decreased movement, you know, the whole 10 movements in however long and I was like something's wrong and I went to bed that night and get a doctor appointment. The next day and the doctor told my husband Alex, hes like "I think he maybe had three hours. I think she would have died in three hours." You know I think what you said is really important for us as moms to work through is that guilt of not like what you said, I wish I could have carried him longer. Oh yeah. I wish I could have carried Teal longer everything in my power wishes that she had been happy in the and thrived within me. And yet I also have to realize that Teal came out when she decided to come out. Sam said, Mom, you need me out more than you need me in. Yeah. And I think Teal did the same thing Teal's like 'No, it's time to minister having an impact on the world. It might not be your plan. It might not ever be your plan ever again.' It's all Teal's plan. Literally. I'm like, Whoa, okay. It all depend on how she's like. She's the happiest kid in the whole world. Sam is too and like you said if I could bottle that up she is magic. She is telepathic. She is a healer. She is intuitive. She has a profound impact on this world. But I believe that every child with a disability right has the job of actually lifting us all up. We're the ones who are down here in the trenches. And it's these little people that are like, 'Oh, Really, Mom, I know not important. Like none of this is important.' And Teal tells me that like telepathically she doesn't talk yet. She's totally talking but not quite sure what's coming out of that mouth yet. Right. But yeah, I mean, I love I love your story. Thank you so much for sharing it and oh, he was meant to be here.

SE: He was absolutely meant to be here. 

JL: How long was he in the NICU? 

SE: 147 days. All the moms know their exact number. Might be exactly and then we were home for two and a half, three weeks and then he went back to the PICU for 33 days.

JL: Oh goodness me. How was that with a mom 

SE: That was worse. Those 33 days were worse than the six months five months we spent in the NICU hands down because we got a taste of being home. The PICU was like a totally different animal. Because micro preemie and Down syndrome is I don't say extremely rare, but it is not very common. Right. And so they wanted to like to kind of put him in this box of like most kids with Down Syndrome do this but at the time, I feel like the his condition of having Down Syndrome his diagnosis, I should say of having Down Syndrome did not come into play until therapies and things because he had so many medical problems that at six months old when we were in the PICU. It was a medical issue, preemie issue like his lungs and the sleep apnea and the pulmonary hypertension. Yes, Down syndrome plays into all of those, but that's not what we need to focus on here. You know, and we had a really big fight in the PICU just to prove his capabilities. They wanted to put a trach in him. The whole thing was he came in because he needed to increase the oxygen for itself. He just needed to be on BiPAP to sleep because he had extreme sleep apnea. And he also needed to just bump up his pulmonary hypertension medicine to very simple things that should have come from the heart cath, but the heart cath essentially almost killed him because the over sedation and his fluid balance was so finicky, they completely flooded him with fluid essentially and like back on nitric the whole thing in the PICU, which was so traumatizing going back to that scenario. They were making rapid changes his body needed a day to recover from one big change. And they were weren't giving him time and it was a whole I mean, we had advocates. I was a crazy woman all over that hospital and I'm like this is not happening. We walked in here on a fourth of the leader. You need to figure out what's happening because I'm not doing that. And they try to tell us that 'a treach is no big deal.' It's a big, that's like a it's a life change for your entire family. And we have two other kids. I'm like, This is not a decision that I'm making just because you think he needs this On what basis you know, and I know the nursing is definitely has a stronger advocacy with all the things with him and it's a blessing that I have that background thruthfully, but it was a very stressful time it was a hellacious first year of his life with all of the medical complexities and so Hey, he's fine. Now. I want to say it was 20 COVID year we got rid of his BiPAP he got rid of his sleep apnea. We had our preemie bubble for a long time, and then that that went straight into the COVID bubble. And honestly, that length of time of us quarantining was just really good for him like he could he made so many strides with his lung growth and being able to come off with things as hard as it was for some still be trapped at home. Because it was like right when he was getting healthy enough for us to take him all these places and COVID happened. And I was like okay, well, this extra time is going to be good for him because in that fall, he started his little preschool and then started getting so much healthier to where we've knocked some of those medical diagnosis off his plate, which is nice. I'm like pulmonary hypertension is the worst. I'm thankful that we've been able to move on from that.

JL: I love how you mentioned the medical background helps you become an advocate. Yes, my mom is a pediatric nurse practitioner and being involved in the medical world. You don't have at least I didn't it sounds like you too. I don't have as much qualms, I guess was saying 'Hold on. Why? Why?' And maybe that's just one thing that we can empower other parents to do if you're not already. I would imagine every single person here is an advocate for their child, however, think it is really important to understand the why and not just the first time asking the why like 10 times different people, you know, different way of phrasing the question. I do think it's really, really important because there were things that they wanted to do with Teal and I'm like, 'But why. What will change as a result of doing this? What will change, what will you find that will help us determine something different?' And a lot of times they came back and said nothing? Yeah, but then why are we putting my daughter under to do an MRI, like why? So that's something that maybe a little tidbit that people can take away is like helped me understand why this will change our life moving forward. And sometimes there's really an answer to that. Sometimes there's not.

SE: Right, absolutely asking questions and not being afraid just because they have the degree behind their name. Doesn't mean they know your child better than you do that. 

JL: Exactly. Yeah. 

SE: Just because Sam had Down syndrome next to his name and his short, this group of doctors thought that they had his number that they knew all the little things, but they really didn't. And so it was up to us to stand up. Is it exhausting? Yes. And I understand that it just gets exhausting having to explain and having to fight but I don't regret it right. I would do over again in a heartbeat because our life would be so different if we listened to them. It's a protocol to trach a kid on day five, I'm sorry.

JL:  Protocol protocol. 

SE:  Yea throw that ptotocal out the wondow. 

JL: Okay. Yeah. So you are also an advocate for yourself and self Care. You post lots of videos on Instagram of your amazing workouts and it's quite inspiring. I told you earlier I actually worked out this morning, just in case you asked me

SE: I don't usually ask people, okay, so you're saved. You're could have spared yourself if you don't want to do it.

JL: No, I love it. I feel so much better when I workout. And I know that's one of your big things. And I know that if I don't feel good, I can't take care of my child to the best of my ability. So talk a little bit about how you got on that journey and what you found since being on it.

SE: So it really started after my son Noah. So who was our middle kid. I was home with these two small kids. I was wearing my husband's T shirts to go pick up my daughter from preschool. I'm like what is happening to me? I just didn't feel good. And I just started to be aware of that. And I think sometimes we normalize the state of exhaustion, the normalized state of just feeling like crap or I'm just busy or life is just hard right? But I feel like self awareness is the first step into changing any kind of habit. And so I just became aware like I don't I don't like how I feel. I'm really short with my husband and I have like some resentment and things and I just needed to start taking care of myself. I am not somebody who was raised with healthy habits. I am from the south. My mom is she's now retired and is finally like taking care of herself. She's like now I have time but I'm like my mom you should have been doing this like this whole time. I wasn't raised in that environment. Like the exercise has a meaning besides like just losing weight like they went together in my household.

JL: That's very common though. The only reason I exercise I mean, it's not me, but the only reason I exercise is that I can fit in that clothes or the only reason I go on a diet is so that I can look better, thinner I mean it is.

SE: There was a period where my mom was like, Well, you've lost weight now are you going to stop and um, no, you know, I did you know lose. I think I have 15 or 20 pounds of baby weight left to lose or whatever it was. I don't know. I don't weigh myself on a regular basis. I have no idea but I was like that I feel so good. Why would I stop and so I really just started with like I stopped eating eggs for breakfast. I stopped eating what my kids were eating for breakfast, and that was the first change that I made because I was like why am I crashing at 9:30 because I ate eggos and syrup for breakfast and then like once I got that habit because I'm very big on like a habit stacking situation like I can't take on too many things at one time so I'm gonna change one thing at a time so I really start with breakfast and Pat and I  were ordering out a lot. We were like cooking those freezer meals because it was like a one hand thing. Quick and easy and I just had to learn okay, if I still want to do spaghetti like how can I make it a little bit healthier? And that's essentially how we kind of changed our nutrition habits over the last six years was just taking the things that we like to eat and how can I make this a little bit healthier so that I am healthier if my cholesterol and high blood pressure runs in my family my grandfather had a triple bypass surgery. It is rampid in my family my husband's mom passed away when he was in high school from diabetes and so more so especially as the kids got older, you know over the last few years and his dad that last year passed away from cancer actually and so it's just it's more of this is what like what do we want our kids to have net like what kind of lifestyle do we want them to have? How do we want to normalize? eating salad and choosing healthier things like why do we actually eat protein? What does it do for us like coming from a more education space of like I eat this because it makes me feel good I exercise because it makes me feel good, right? You know, I like the way I feel it gives me patience. It gives me energy, all these things. and really taking that tone and it's just become really important for my husband and I both like be physically and mentally well and like do these things to take care of ourselves. And so we have started this in 2016 that year. And then when I found out I was pregnant, and it was the first pregnancy that I had ever even worked out. I mean I wouldn't even go on walks that's how sedentary I was I just there was zero exercise happening and it's kind of ironic because my husband was in special forces doing physical fitness tests and being in like tip top shape was his job. I ever went to the gym with him I hated it. I would not good forcing you to work out 

JL: And now you post videos of working out.  

SE: An now I'm like come with me, I mean we still both enjoy it. But it's funny because I do my own thing. And he does his thing or sometimes we work together but it didn't start that way. So I say all that to say if it's not a value of yours or if you weren't raised that way or if it's not something that you're used to allow yourself to grow into evolved into that piece because Who I Am That was definitely not who I was six and seven years ago.

JL: Well there's something really true about that in parenting as well. Like you don't immediately like you said I don't know how to be a Special Needs Moms. Well nobody does you really learn it's slow you you learn how to become an advocate you learn how to ask the question, you learn how to do feeding tubes, or I mean there's so many things that we have to learn but it is baby steps and I mean I no joke. There are days that I don't get to work out and I'm like well how many times you go up and down the stairs? Okay TEALS not doing stairs yet. So how many times did I pick up a 35 pounder and run up the stairs or maybe not run but you know carefully walk up them. We have three flights of stairs and then another flight to get into our house. I mean it's so I think it is important to say that it's baby steps. It's moving more just moving more 

SE: It really is and when I found out about Sam and then after when he was in the NICU, it was just part of my survival. It was 100% not something to lose weight because with him, it was I mean there was a lot of this I would get going and then he would have a really bad week in the NICU and I wouldn't exercise because maybe I was there and I was too mentally exhausted. You know, I think that all in all out mentality kills most people's motivation and discipline. And if you can attach a bigger meaning to why you're doing those daily things you're going to you're going to find yourself showing up more often. Sure, I eventually lost weight from being pregnant with him, although it wasn't very much because he was a pound I haven't reached that. I didn't even have a third trimester. So it was it was 100% I need to take care of myself when we came home from the NICU like my hair was falling out. I was so stressed it was so not a healthy environment. And I just knew this is part of my survival. I need to take care of myself so I can take care of him for the long haul. This isn't a season it's for life and how am I going to show up and honestly not just for him but for my other kids because he requires so much of me that I need to be well and whole to give anything that are the two of them truly, and if I'm a shell of a person, I have nothing to give any of them and they're all getting half version of me. 

JL: Yes, a hald assed version of you, you can swear on here. So the one thing you also said is it gives you patience. And that is oh, I mean I haven't had to count to 10 so many times in my life. I remember the first teacher that said Jen, when you ask Teal to do something you need to count to 10 before you expect her to do it for her brain to tell her body what to do and I'm like oh my god 10 seconds. It's forever in my head. So you know working out gives you patients. It also makes my relationship with my husband better and I know you reference that as our any relationship whether it's parents or your children, but also intimacy. For me when I am moving and active and feeling better about me. I am far more willing to be intimate with my husband. And that is important for a relationship as well.

SE: It was honestly one of the ways that we saw each other when he was in the NICU. That's kind of how Pat started working out at home because previously he was going to a gym and when we were ships passing in the night because I would go during the day and he would walk after we ate dinner for a few hours. And we would work out for 20 or 30 minutes. That's all my work is usually I am not an hour long person.

JL: Who has that time? Who has an hour. I don't have an hour 20 minutes literally my mirror is phenomenal for me like me, I'm like mirror 20 minutes done.

SE: Like I could have 20-30 minutes and I can shower and be done in an hour. Yeah, that's Yeah. And it was so it was one of the ways that we found time to connect and to talk it was our stress reliever because it didn't take a lot of time. Yes, I can control I can watch the situation if you want to go work out and it was a we always did and still do like check ins with each other like how are you feeling? Do you need to go work out or especially when Sam is sick and the situation is really acute. A perfect example for this is Sam, we were supposed to go to Mexico. We were gonna leave the country I was so proud of myself. I finally got up and now I was like I'm gonna do it. We got our will done like everything. All X's and O's and T's crossed and I've got and he gets pneumonia. I'm like he's never had pneumonia, not even an RSC or flu season and all the times he said those. What are the odds ever back on oxygen and he's in our bed. Pat and I are rusty because it's been so many years and we're like how did we survive this for so many years? It got to a point where he was like you just need to take a walk I like 100% though went back to like we knew what we needed to do. You need to sleep I need to take a nap I literally went upstairs in my daughter's room which is like the darkest quietest place in our house. I took a nap in her bed. I was like you have this I'm gonna go take a time I'm gonna rest and I'm gonna go do a workout. It's just saying what you need when you need it. And being okay also like Pat deals with things very differently than I like I'm a feeler and sayer and he is an internaliser and understanding that I think a big part of marriage and parenting kids with special needs is understanding how each of you cope differently but also what does that person need what I need is not what he needs, understanding that and being able to be there for each other in that in that timeframe is really big piece to our marriage is just that communication piece. 

JL: 80% of marriages with children have special needs fail.

SE: So scary. Our OB told me that when we were I went for my six week checkup she said how are you and Pat doing the NICU life is hard, you know. She even said there as a NICU divorce rate and I was like actually we're okay. Because Pat and I also use humor as our coping mechanism for a lot of things. It can be very inappropriate, but he's one of the I can't imagine having a different person and an ER room or hospital room because he's he's gonna lighten the mood with a joke or something and it's just gonna make me laugh and it's gonna make me feel like okay, we're gonna be okay. We're going to get through this and we alternate being the overreact or the under reactor and are very yin and yang with Oh, you're freaking out. Okay, I need to.

JL: That's the balance. It is the yin and the yang. It is the communication it is being honest. I was thinking sometimes Alex assumes that I need to go work out and he'll say you need to go work out and sometimes I need to go meditate. Yes. And I actually because he kept getting mad at me for not working out. Because at that point in my existence, I didn't want the 20 minute workout. I needed 20 minutes of deep breathing and journaling and quieting my mind and going into my spirit team and talking with them and asking for advice and whether it's whatever you call it, if it's prayer, or if it's meditation, or I don't care what you label any of it. I don't care if it's God or source or universe I don't care. I needed the spiritual time. During that moment. And so that's all something and because we actually got into arguments like why don't you work out when I tell you you can go work and again, he sounds like he's so controlling. I tell you to go work out. No, that's not how he is. But it's also saying in this moment within this season of my existence. A, B, and C are the most important things I'll get to D, E and F later and the balance the yin and the yang. I think it's the beautiful thing that you and Pat have. I hope people are really taking away some little notes.

SE: Thank you. I think a big piece to the cliche self care term is especially for parents of children with disabilities of any kind. It's that what do you need to be well and hole in that moment, and asking yourself that because one moment it's going to be an exercise. One moment it's going to say, like you said, I need to go outside I need to be in nature I need to go for a walk. I don't even need earbuds I need total quiet me and my thoughts right and I think when you can maybe make a list I'm gonna sit down and I'm gonna write down things that I can do that I know that will make me feel good so that when you're in the middle of an overwhelming you're in the middle of a burnout seasons, like you have a list of what is like one or two things that you could do, because whenever you're in a state of turmoil, your first reaction especially if you're not used to taking care of yourself. It's not going to be what can I do for me? It's not going to be that you're going to think of anything but you but if you have a little reference that you can say okay, this is what my this is what my soul needs, this is what I need to take care of me. Do I need to call my therapist? Do I need to do a check in with a friend how can I find these periods of time and what this turns into the more that you have that little self reflection piece and the more you can start to apply these you're gonna become more aware of when you start to have those feelings, you're gonna immediately start doing your coping strategies. You're gonna feel yourself drawn to those things because they make you feel good. It's just really building up your resilience because it's life is not easy. There is so many times that I just Oh take a deep breath. Why this is so hard. It is hard. It's not like this. It doesn't make it easier as well, I will say but it makes your ability to cope with it easier. It's not going to change the severity of your situation. But all it's going to do is build up your resilience so that you feel more capable and competent and your role as that parent

JL: Gettin all hot and bothered no because, it's so true. It is so important to have that list and it doesn't have to be 20 things it can be five sit down before you go to bed tonight and write those five things that feed your soul right and five things that take five minutes you know, maybe it's a five by five list.

SE: I was just the caveat isn't these five things cannot be cleaning the house. That five things are not self serving to your household or to other people. Because I have people be like I can organize a closet that Sure Sure you can. But that is not what your soul needs. 

JL: I do need a clean closet haha. 

SE: Right? So it has to be for you. 

JL: Love that. Oh my gosh, this has been just fantastic. I'm gonna go write my five by five and I'm gonna put it on my frigerator you know so then if like, my husband sees that I'm freaking out in needs or whatever you can be like, Hey, Jen, you know, maybe one of these five things would be good right now and like, ooh, right. Okay, I'm gonna have him do it. Have you read this? I read this the other day that the stress hormone, cortisol. People caregivers that stay home with their children and we're not talking about children with special needs or disabilities. Like just being a stay at home mom, right. 98% Higher cortisol levels than someone who actually goes to a job. 

SE: Oh, for sure. 

JL: And i'm like uh. Yeah, and cortisol is also why we gain weight. You know working out and taking care of yourself lowers that cortisol level. So yeah, that was really eye opening to me. Definitely proceeded to tell my husband Hey, by the way...

SE: Oh for sure. My husband is very good about when he walks in the house, especially during that time, you know, like when Sam was really sick. What do you mean what do you because I was like, I need this in the car. 10 minutes total silence nobody talk to me or touch me. That is also self care. Sitting in your quiet car.

JL: You also said nobody touch me. Okay, that is so true.

SE: With little kids that you know were so tiny, it was touching...

JL: all the touching I know and then your husband was to touch you at night. You're like, no stop it. 

SE: I always tell him I'm like there has to be there has to be a divider between him and being a mom and walk out of the room and when you have to be like I need a period of time. There has to be a spacer.

JL: Yeah, different times. I'm very attached.

SE: Yeah, but him being home during COVID and working from home. He got to see all the things and I think not that he didn't appreciate what all happened but he understood now the load of of it all and how stressful and how you can't get anything done and you know, all the demands of the tiny little people. It just created a more of an understanding, I think. Yeah, and a true appreciation for the work and the load. And also I will say like it came a point when especially when Maddy and Noah got bigger and they had more so when she went elementary school Noah's now in elementary school, there's a lot it's very chaotic with the amount of teachers and lists and papers and things. One other piece of advice that I would give is to just let your spouse help more, take things off your plate. You know, we don't have to be the color of all the just because it's what you've always done. This is again for life has taken Sam to the ENT now to almost all of his specialty appointments without me being there. Obviously if there's like an important note, I will tell him that in order for me my load to be lightened, which ultimately it did over the last year, so it was just it was too much for one person to handle and that's ultimately what COVID taught us was like one person cannot handle all this. Was how do we divvy up things instead of it being one kid's responsibilities falling on one complete parent like we just are in communication on all it like I keep him in the loop with all things and so it's allowed him to be able to go to the pediatrician with him and speak intelligently and know the medications that he's on and know the things and I think in terms of my quality of life that helped tremendously and I know not everybody has a partner that is as able and willing. But what I will say is that the big key piece is letting them figure out their own way to do things and being okay with it being different because I am a controller. So this was not an easy task for me. I just have to walk away. And I have a funny story when Sam was on oxygen and he had his so he had a pulse ox on his foot and then he had a feeding tube and oxygen all the tubes with all the clothes. How do we do this? I had a very specific way to make sure everything wasn't tangled. He also had his own way and they were not the same. And I was like,

JL: no, nobody can see you but you're like biting your lip.

SE: I had to bite my tongue just because he's not taping it the right way. It didn't come off. He did it his own way it I basically had to remove myself from the room. Why do I start a conversation or an argument about the way he's doing things? And so often we want help but we don't want to relinquish the control. In a way we're causing our own overwhelm because 

JL: Yea, we're making the bed we sleep in for sure.

SE: And I have gotten really good at asking for help and really good at saying I don't need to do everything. I just don't and that is a big piece of also self care truthfully because I think it's all encompassing. of setting boundaries and asking for help as well as taking care of yourself mentally and physically. It's a big piece for me is not overloading myself and really being aware. Doing a check it like asking myself, What do I need this week? What do I need help with? That's a really big thing for me. My parents I'm thankful they live so close and they help us a lot because Pat travels a ton. Like he's going out of town next week. And it's... he's gonna be home for Mother's Day, but I'm like that week. He's been gone all week this week. He comes home today, Sunday to through another Thursday. And I was like I am I who booked a facial like I'm doing something for myself. So I have something in my mind. I'm already thinking about that. Because I know he's going on Sunday. I'm like this shit's for the birds. I am so tired. But I have that on Wednesday to look forward to I have something for myself to look forward to.

JL: That's a great point. Yeah, having something a little carrot in front of ya. Yeah, it is true,

SE: Whether it's a mom's need up or a phone call or a coffee date or something that you enjoy. Looking forward to

JL: Tell me a little bit about the caregiver burnout resource that you have.

SE: Yes. So it's essentially a little toolbox of things that I have learned over the years. Sam had an ambulance ride that really sent me in a tizzy like I lost it. My wheels came off. I thought I was doing good, you know, because I'm a big proponent to say exercise isn't enough to keep you well and whole like you have to do all these other things. You can't exercise yourself away from burnout. But I just was I was doing too much. I wasn't asking for help. I was saying yes to being room mom and sure Noah can do that and sure this and I wasn't utilizing the resources that I had around me and I was you know, not letting Pat help as much and I was just in this thing. I can do it all I've always done it all. That's the example that I had for my mother. So what's wrong with me? Why can I handle this because it's different. And it's more Sam's care is like three kids and one, so I it's natural, and I learned really hard lesson. That was a hard lesson but it's a very valuable one that this is not meant to be done by just one person. There's resources for a reason. There's hope for reason, and as hard as it is to ask for it. I wasn't I was not doing well, you know, I did start going to therapy, but I was having migraines and not sleeping and just really running myself into the ground for no reason. I was forgetting to pick kids up from school like total just was burning the candle at both ends and not really taking time to take things off my plate. So that self care was really like me taking care of myself. And taking care of myself in burnout was was really me saying okay, what do I need? I need to cut myself some slack and not beat myself up for the things that I can't do the way that my mom did. You know, I have to not take on so many things. I have to ask for help and all of those things are hard and they're not easy, especially if it's not in your personality. And most I think Special Needs Moms and caregivers find power in being like I control this or I can do it. I mean I don't want to do it all that's where I am right now. I will take help here and heal here. It's little things like this week is Teacher Appreciation Week at Sam's school. And instead of me worrying about baking something while Pat was out of town I asked my mom to make a cake and she brought it up to the school. I just completely took it off my plate.

JL: Oh my god you're doing it. So smart.

SE: Right I'm like you do it and deliver it. I'm like I need to like step away.

JL: Ugh, I just committed to banana bread.

SE: I am the committer because I want to do the things but my follow through with Sam's track history of calling me at all hours of the day to come get him school from various reasons and kids being sick like I want to commit I want to do things but I actually like it's too much and so a way for me to still feel like I'm contributing because I want to help I'm a helper is to ask other people to help for me. 

JL: I love that I think that's just fantastic. I might have to I don't know someone's gonna make some banana bread anyone anyone I'll send to the address you can ship it I'll pay for the shipping. All right.

SE: So that resource is really just a list of tools. It has some self reflection pieces. It has a little checklist, really for you to check in with yourself. If you're feeling those things and chances are you're probably burnout. It gives you a list of things that you can do. There's like five little steps and then I have some affirmations because I'm very big about affirming what kind of mom I am and that I'm doing enough that I am enough that this is a really hard situation. And I'm doing the best that I can because I think at the end of the day like we have to be telling ourselves those things we have to be supporting ourselves. So that we can support our family and it's just a free little resource that I have. 

JL: And where can people find it?

SE: It's on my Instagram link in a link in my bio so you can find it there. It's called caregiver burnout.

JL: And what is your Instagram 

SE: @SaraEngland1 

JL: and there's no h on the SARA

SE: Yeah, there's Yeah, no H in Sara

JL: Sara, we have a closing question which might be very tricky for you to answer or something might pop in really easily. But what is one magical experience that you had with a person with special needs?

SE: A magical experience could it be is it with my son or with...

JL: It can be anything. No right or wrong answers.

SE: I think the most magical experience that I've had with Sam was we went to we took him to Disney World very quick caveat is feeding is our biggest struggle with him. He still eats blended food. It's a whole thing. He wasn't even sitting in a highchair and we were like how are we going to do this? And so I spent months trying to prepare him and do all these things. How are we going to keep him calm and not overstimulated and he got there and it was Sam at Disneyworld was like I want to go back like tomorrow because it was the most magical though also the people there were so amazing with him and just treating him like a person and just treat it like engaging and interacting with him the same way that they did with Maddie and Noah but seeing him light up like he was like oh my god, this is the coolest place on earth and he was so happy. Always so excited, never got overstimulated, wanted more sat in a highchair all the time. It was one of those things where I was like we you know really threw a dart out being like us planning a trip in another state was the first time we'd ever done that him being on an airplane. It was a very big process of putting this into play. It was the December of 2021 it was still still having to wear masks and thankfully there if you're his age and also him having special needs are very accommodating of that, you know at Disney but just the whole experience. I was like I'm gonna hold on to this perfect little moment because we don't always get those you know. Going to therapy makes me want to poke my eye out but Disney World was magical. 

JL: Perfect. Sara. thank you so much for joining us. I know I've taken a lot away and I'm sure the listeners have as well. So wonderful. We'll put all of your information in the show notes. And I definitely encourage people to reach out to you and watch some of those videos on your Instagram because they are very motivating. Thanks so much. Have a really wonderful day.

SE: Thank you for having me.