Hello and welcome to the podcast. As the dawn of a new year breaks, I'm filled with renewed hope and the pleasure of revisiting an episode that remains close to my heart, featuring the indomitable Anna Brown.
Through the lens of raising a nonverbal child, we discuss the profound lesson of releasing control and the importance of honoring our children's individual journeys without imposing our own expectations.
Connect with Anna:
Blog: https://www.motheringrare.org/
IG: https://www.instagram.com/mothering_rare/
Facebook: https://www.facebook.com/mothering.rare
Connect with Kara, host of The Special Needs Mom Podcast:
Instagram: https://www.instagram.com/thespecialneedsmompodcast/
Website: https://www.kararyska.com/
Coaching Opportunities
Pathway to Peace {Group Coaching Program}: Schedule a Consult or Contact Me
Join The Special Needs Mom Podcast Community FaceBook Group!! Click here to Request to Join
Hello and welcome to the podcast. As the dawn of a new year breaks, I'm filled with renewed hope and the pleasure of revisiting an episode that remains close to my heart, featuring the indomitable Anna Brown.
Through the lens of raising a nonverbal child, we discuss the profound lesson of releasing control and the importance of honoring our children's individual journeys without imposing our own expectations.
Connect with Anna:
Blog: https://www.motheringrare.org/
IG: https://www.instagram.com/mothering_rare/
Facebook: https://www.facebook.com/mothering.rare
Connect with Kara, host of The Special Needs Mom Podcast:
Instagram: https://www.instagram.com/thespecialneedsmompodcast/
Website: https://www.kararyska.com/
Coaching Opportunities
Pathway to Peace {Group Coaching Program}: Schedule a Consult or Contact Me
Join The Special Needs Mom Podcast Community FaceBook Group!! Click here to Request to Join
Hi, I'm Cara, life coach, wife and mom to four incredible and unique children. It wasn't all that long ago that my son received a diagnosis that had my world come crashing down. I lacked the ability to see past the circumstances, which felt impossible, and the dreams I once had for my life and family felt destroyed. This forward has many years of surviving and not at all thriving, and you'll see a mom who trusts that she can handle anything that comes her way and has access to the power and confidence that once felt so lacking. I created this special needs mom podcast to create connection and community with moms who find themselves feeling trapped and with no one who really understands. My intention is to spark the flare of possibility in your own life and rekindle your ability to dream. This isn't a podcast about your special needs child. This is a podcast about you. If you are a mom who feels anxious, alone or stuck, then you are in the right place.
Speaker 1:Welcome, hello and welcome to the special needs mom podcast and happy new year. I do hope that each of you had a restorative and significant and impactful holiday season, and now you've made it through. I have decided for this first episode of the year that I'm going to re-release one of the most loved episodes from last year. This episode is from March 1st 2023. My guest is Anna Brown. I still want to say Anna, because my daughter yelled at me so much about when I read her frozen. I'm always saying Anna and she's like it's Anna and so actually even in the episode I go back and forth, but she pronounces her name.
Speaker 2:Anna.
Speaker 1:This episode is really good. I love the language that Anna shares and I love the writing that she shares and I just really admire her as a mother and as a human, and so I'm not going to say all the things I say in the episode because you can go listen to it. But please take the time to start your year off with this conversation and have it be something that provokes your own growth and thought process and kindness and questioning of your own life. Let's get into it. Here's the episode. Let's welcome Anna Brown to the show. I am so excited that we, after many, many months, have finally been able to see each other live face to face for this podcast. Thank you so much for being here.
Speaker 2:I'm so excited to be here and I'm so excited that the stars actually aligned this time, and they almost did not, so we made it.
Speaker 1:Well, I think all of our listeners know the juggling act that is our life, and so, whether it's normal life things or things that come up with our children, you know, flexibility, I think, is a strength that we have developed. So, yes, I'm glad it worked out today. Well, let's start off with giving a little bit of context to who you are and really how you fit in to the special needs mom community. What I call this often is our becoming story. So why don't you start from whatever point? You feel like was the first part, where you said, hey, we're on a different path here, so I'll turn it over you to just to share a little bit of context on your journey.
Speaker 2:Yeah, so Emery was born in 2017 and I feel like, yes, it was my becoming story, but it was also, in a lot of ways, my unbecoming story. So she was born with Rubenstein-Taby syndrome. We did not know that prior. The only thing that we did know was that she had what's called a genesis of the corpus colosum, and a lot of times well, I don't know if the doctors told me this just to give me some hope, but they told me a lot of times kids can be born with this and they are quote completely normal and live quote normal lives.
Speaker 2:And my pregnancy was. It was such a roller coaster. I was so sick for nine months and they identified something at the anatomy scan that they didn't look right to them. So at first they said it was her heart. Well, then it was not her heart, then it was her kidneys, then it wasn't her kidneys and her leg was shorter and it just went on like that and my heart was kind of being jerked around the whole time.
Speaker 2:So I feel like I kind of stepped into that role of, okay, maybe I am going to be a mom to a child with a disability, oh, maybe I'm not. It was kind of like that in and out my whole entire pregnancy, and there was a lot of denial there as well. Just because that is my default is avoidance and denial, and I'm very good at it. I could probably go into business as a professional of some kind if that even is a thing I would be. So I kind of had like this one foot in, one foot out and mostly not in at all in my mind, but when she was born, my birth actually went. It was the easiest of everything.
Speaker 2:She was born in like four hours she's my first child but we had about four to five hours where we thought, okay, she's okay and she looks perfect and she looks like she's thriving. And then we started feeding, or trying to feed, and she started aspirating. And once she started aspirating, she started losing oxygen, turning blue, and they rush her to the NICU. That was my moment of I don't know where it's going to go from here. So she was in the NICU for 27 days. We found out that she had Rubenstein-Tabby syndrome about two weeks after she was born. That started the becoming, but also unbecoming, of a lot of things. So that's the context, and she is now six years old. That is, then, a wild ride, to say the least.
Speaker 1:I feel a little bit acquainted with it because of our good old pal Instagram. We have talked I don't know how long over the course of months and just different seasons, where I know we were talking when you were going to get surgery and I think I was approaching surgery and connecting on that. So I feel like it's so great to be able to feel like we're witnessing other moms living this alternative lifestyle. So thank you for sharing that. You've shared with me how having a medically complex child really shattered everything you thought you knew. I would love to hear just a little bit about this and how you describe it. Also, I'd love to hear a little bit about your rebuilding process. What did it look like to start to pick up the pieces again and put your life back together?
Speaker 2:Yeah, that's a really good question. I would say the first thing that actually had to happen was I had to allow the pieces to shatter for years. I feel like I was trying to hold up these pillars, the pillars of just perfection and things that I have to control For years. It was this I was trying to fix. I was trying to get answers, I was trying to give everything I could possibly give to you know, kind of resist what was going on around me and resist that it was changing me. I've never been good with change. I will say I am so much different now than I was before, so I'm glad that that has come.
Speaker 2:But that first step in realizing it's okay to let things crumble was that point was about three and a half years in, and the three and a half years was a time of we weren't getting the care that she needed here in Atlanta. She was not sleeping and she was screaming in pain through the entire night for most of those years and we were not sleeping. Life was very difficult and during that time it was kind of like okay, well, I have nothing left to hold up, like I cannot, I can't hold up anything anymore, everything is broken right now. But that ended up being an actual turning point because once I let it crumble and let everything that I thought I knew or that I was supposed to do crumble, everything started piecing itself back together. It slowly and baby steps, very tiny baby steps. But that was a point where I could start rebuilding something. It wasn't what I had in mind, it wasn't what I expected, but it turned out to be something that not expected but beautiful in its own way. The rebuilding. Once we got to Cincinnati Children's. They have a specific Rubenstein-Tabe syndrome program. It's a very rare thing but the doctor, dr Rubenstein, was their local in Cincinnati. He had this program. Once we got there and doctors started actually knowing what to do and knowing the syndrome, we started making these steps of her feeling better and her quality of life improving naturally improved our quality of life.
Speaker 2:She required surgery. It was a PRAD compression surgery. That was another point. Anyone who's had a child that they go through surgery with you lose all control. You have no control whatsoever. You are putting them in the hands of doctors that really and truly you're also putting them in the hands of God, I believe. I think we have this control. At that point in time I realized that was all an illusion for me. I was acting like I had control. I was making the phone calls, trying to get to the doctors, do all the things that really and truly that's an illusion. I didn't have all of the control. I would never have all of the control to make her better as far as her symptoms that were causing her pain. So that surgery, I think, was another really big piece in that rebuilding process, because it was a brain surgery. It was a long surgery, there were a lot of moving parts and I think that was probably the last bigger rebuilding piece for us that we pushed off of Once that was done.
Speaker 2:From there I feel like we've just been putting tiny pieces the last year. Especially. She is improving. There's still a lot of complex things about it, but she's sleeping so much better, able to do a lot of things that she was struggling with. So I feel like we're in this process, you're holding both. You're holding both of the complex and the hard, but also they're really joyful and really good things that are happening at the same time. Realizing that those can coexist was also a big, pivotal moment for me. So those are all pillars Instead of the pillars of perfection. Now there are all these pillars of having coexisting emotions and being able to be flexible and learning that you don't have control. So those are my pillars now, instead of the perfection.
Speaker 1:Gosh, the way that you described this phase that you were in of the controlling, the fixing, the all-in effort to do anything it took for your daughter. I know that that's a phase that we all relate to, because I see it over and over again in the ways that my listeners and, ultimately, me and clients, follow this journey. What's beautiful is that the stage right after this is what I call the rebellion. It's when we rebel against this control. We rebel against what is, and it's almost like this rebellion against everything we thought would be. We thought our children would bring worth to the world because of what they would accomplish. It turns out that is completely wrong. So there's this piece where, also, I think we as moms rebel against this experience that the only thing we can do to help our child is to do this fixation, fixing, controlling thing. We realize that we deplete ourselves to an extent that it's not working, it's not sustainable. So we turn and actually that's when I think we realize, okay, I've got to figure this out because this is not working and my daughter or son is not benefiting from me continuing on this way.
Speaker 1:So I really love the way that you articulated that. Really, just give us this picture of for you, this real pivotal moment. When you talk about surgery being the ultimate surrender, I feel that all through my body. I remember my son's first brain surgery. His first surgery was a brain surgery. I think that's really for me when I have the most tangible experience of the peace of God in my life, because I don't know, I mean, that is the highest level, I think, of fear and surrender ultimately, to be able to have survived that. Thinking back to those moments, I think, help us recognize what we're capable of. Not that we want to do this again, but we know we can.
Speaker 1:Well, you have taken a lot of your story not necessarily your story, but just a lot of your experiences Now being six years into being a mom to Emery, and you started this cool thing on Instagram called Confessions of a Special Needs Mama. It's probably how I first met you. I saw these cool posts going around about this cute girl with these cute little signs, with this very clever saying that just hits right in the heart of a special needs moms. So I want to know a little bit like how did this start for you?
Speaker 2:Well, it all started because I needed an outlet. I needed to be able to say these things that were all inside me, that I couldn't necessarily just tell anyone that I guess I was wanting maybe understanding a little bit more. I guess that was what I was really hoping for. But I was also hoping for that, in doing and sharing my deepest and raw emotions, that it could help somebody else know that they're not alone, because so many times throughout those years especially the times where we weren't sleeping life was really hard. That isolation was really difficult too. It was just all consuming. A lot of the times it was like nobody knows what I'm going through, nobody understands I'm alone. Really, those were lies, but they were very much felt.
Speaker 2:So I started sharing this in hopes that I could be the one thing that somebody saw and said, oh wait, she feels that too and maybe I'm not alone. And so that was what really spurred on this sharing, and I did not expect it to be shared as much as it has. I was just thinking, if it gets to one person and they feel not alone and they can face another day with this, I would be successful with it. It ruined something that I really didn't expect. And there's this community of people now that I can share things with, and they're like oh yeah, I just did that or I just felt that, or I totally get it, and having that community it's everything. Whenever you have a child with disabilities, you have to have a community, and that's what it has become for me, and so that's where everything started. That's why I started it. I really love it.
Speaker 1:Well, I really love it too, and I'm so glad that you do it.
Speaker 1:And it's such a good example.
Speaker 1:I love that you pointed out that so many of us go to the place, even though you know this is a lie and I do too it doesn't mean our brains don't occasionally still go there too.
Speaker 1:Nobody understands I'm alone, nobody gets it, but you being able to identify that as a lie allowed you to say, hey, I'm actually not alone and therefore there's somebody else out there that does get this and I'm going to take that and I'm going to share it, which is the thing that actually allowed you to feel even less alone. By you going and leaning into this truth, you went into action and look at the gift that you have now because you are willing to confront the lie and say I'm actually not alone, I'm going to share this with other people and I'm going to be known because I'm going to show up and I'm going to say this thing that I'm feeling right now, and I just love that this is such a visible way of us, as special needs moms, stepping out and saying I'm not alone. So thanks for being a model of that to this community.
Speaker 2:I appreciate those words that's so sweet.
Speaker 1:Yeah, so one of the posts that you shared with me that got a lot of attention was one I think it was recently God gives special children to special people. In that post, I went on to read it and you say something at the end. It really summarizes, I think, the truth that us moms actually feel and it's God gives children with disabilities to ordinary people that have a chance to wake up every day and make a choice. And what I want to know and we just talk about a little bit is why do you think this hits such a nerve with us moms when we hear this, this or even any of the other sayings like you're so strong, I don't know how do you do it. There's these things that just really get under our skin quite easily, and I want to just hear your thoughts on why you think it hits such a sensitive place.
Speaker 2:Well, for me, god gives special children to special people. I think it hits a nerve because I worked in special education before I had my daughter and I also did nonprofit work and I saw these kids every day that their parents were not special people, they were not involved, they were. A lot of them were neglected, a lot of them were in foster care because their parents were alcoholics and abusive. And that is my life before Emory. And every time somebody says that I just see their faces in my head and it really hits a nerve for me because I know, I see it every day.
Speaker 2:And I think, for families who have children with disabilities and they see so much more of the world than most do, you go to a children's hospital and you see everything. Your eyes are wide open and you see kids who were abused, you see kids who were neglected. And I think that's probably one of the biggest reasons is because we see so much deeper into the world and that specific phrase it's like it sits on top of where all this world is down here. This phrase is like way above the surface and it doesn't even scratch what we know to be true, and so I think for me anyways, that's why it really hits a nerve, and you know not that this is the main point, but it's not theologically true.
Speaker 1:You're like, yeah, there's nothing, right, I love how you put that in there, just saying that's a really unique perspective that you have, because I have such a different experience with why this hits a nerve and that's so cool. And what's interesting is, I think what I really love about what you said in that post is it's ordinary people that have a chance to wake up and make a choice and, like you said, we actually don't have to. There's actually parents out there that are not showing up for their kids. Right, they are not inspirational, quote unquote yeah, and nothing against them. I think all of us actually get it like of why they're not able to. And I think sometimes, you know, people come to me and they feel so stuck and they feel so trapped and there's something really magical about giving yourself permission to quit, like actually you don't have to. You could walk away, you could find care for your child and you could surrender and that would be fine. And then we recognize, oh, but I don't want to do that. I want to be here. This is what I'm choosing, because there's a very different experience of choosing in versus feeling like you're forced in, like I get real testy when I feel like someone's like forcing me to do something. Thank you so much for sharing your insight on that, and I'm sure we could go on and on about all the things that people do say or that we do hear over and over again that we have some feedback on for people, definitely.
Speaker 1:Actually, I want to look back at this control piece that you mentioned earlier. I actually took a little piece from one of your blogs and I'm going to read it and then I'm hoping that we can talk about it, and it has to do with several different things, but it does actually tap into the control. So this is from your most recent blog and it's called Confessions of a Special Needs Mama. So this is the last paragraph. This is your conclusion of this particular piece, so I'm jumping in at the end, but I'll let the readers go read the whole thing. So here we go.
Speaker 1:Any life that didn't need to be normal to be considered good, where difficult and beautiful could coexist in the same space and I could find joy in the life we have been given instead of trying to shape it into my idea of what it should be. A life where I'm learning how to let go of the control that I never really had in the first place and trust in God's strength not my own I started to follow Emery's lead. We cry in the hard times and we laugh in the good times. We acknowledge the struggles while holding space for hope.
Speaker 1:Are there extremely hard and worrisome seasons? Absolutely. There is heartbreak, devastation and sorrow that strangely coexist with deep gratitude for the blessings found in the middle of the pain. When you take chasing normal off the table, you can simply live in what is, and that, my friends, is where the different life becomes vibrant and deeper than anything you could ever have created on your own. Oh, my gosh, this piece is so beautiful and the part that I highlighted that really, really hit me was when you take chasing normal off the table, you can simply live in what is, and ultimately, you're writing about a new paradigm. So you know, I'm a life coach, so these are the things that geek out in.
Speaker 1:Yeah, and you're writing about basically it's like you had a different shade of glasses, that you were looking through the world your entire life, and what you're writing about is you taking off those glasses and being able to see something you didn't see before, which is like mind blowing when you experience it.
Speaker 1:I remember there was this moment for me when I was witnessing my son in the kitchen and just looking at him and observing him and I was like I'm going to be cooking and I recognize that I had this vision for him.
Speaker 1:I had had this vision always of, you know, my sons that they would play sports, that they would get good grades, that they would go to a good college, that they would then find their love and get married and have kids and, of course, you know, live happily ever after. And this is really the only picture I had for any of my kids. Like, really, it wasn't questioned and it occurred to me. When I was watching him and witnessing him, I was like, oh my gosh, he can have an equally amazing life and have none of those things, but that actually is not the thing that will make his life meaningful, valuable or even fulfilling. And for me it was so freeing when I let go of this chasing that you speak about like letting go of this normal, and it actually allowed me to be where we were and it just, oh man, like the piece I don't always love there.
Speaker 1:I will say sometimes I venture on over back to the old paradigm. However now at least I know. Another one exists, yes, and so the curiosity I have is when do you notice yourself chasing normal Like? When does this pop up for you and when are you most tempted to do that?
Speaker 2:That's a good question. Like, chasing is my default. I'm a go getter, I am a perfectionist, a recovering perfectionist, let's put it that way. I'm a doer and that has always been my default, and so I find myself chasing normal when I'm not intentionally not chasing normal. Does that make sense?
Speaker 1:Oh so much. Yes, that's, good.
Speaker 2:I'm intentional, when I'm intentional about living in the moment and just really appreciating where we are, that's when I can kind of tame those chasing genes down.
Speaker 1:Do you do the endiagram at all, are you?
Speaker 2:familiar with. Yes, are you a three? I am a, I think a two, a two, okay, and a one. I want to say Okay, I know I was right. Well, in eagrams three.
Speaker 1:My therapist is always not laughing at me necessarily, but just kind of laughing like, oh, this is the three and I'm so sorry Because we have that chasing tendency and yeah, I interrupted you back to you talking about, by default you chase. So you have to bring that intention in to basically stop chasing.
Speaker 2:Yeah, one other area that I see myself it kind of bubbles up a lot more is when I'm comparing, right. So when we are surrounded by other kids or other families who Do have neurotypical children and they are doing all of the neurotypical things they're doing school, doing sports, doing all of these things that in my mind Before I had emery that was, that was just the normal quote life. When I start going down that that path of looking at them and looking at their life and Thinking, wait, my life doesn't look like that. Is that? Does that mean mine Isn't good, isn't valuable?
Speaker 2:And then I kind of start Getting that bubbling up effect and I am able, a lot more quickly than I used to able, to realize you know, that's not even Somewhere I should go in my mind just because their life looks different doesn't mean mine is less valuable or that emery is less valuable because hers is. She's on a different path and I think realizing that you just it's kind of hard to put into words just realizing that the worth and the value of A human is not tied to that doing and that constant adding all of these quote normal things in, it's not kind of that. Everybody has their own value that's not attached to their ability to play sports, you know, and that's that's kind of where I landed with that and this connection or disconnection actually of value, of Contribution rather to worth, and just recognizing like that humans have inherent worth.
Speaker 1:What I find is that we can intellectually know that, but I'm finding that it's really requiring, as you talk about this intention, of A revisiting and bringing back that intention of reminding myself that, especially because we live in a culture that is so Pushing and marketing and advertising, getting ahead, all the things that you know I kind of mentioned in the default vision Hustle, there you go, let's look culture, yeah, and so I find that it's a lesson I feel like I learn over and over and over again and it's almost like it it seeps back in and then I get to wash it all out and then it seeps back in like the picture I had in my mind. When you're talking, I was like this is like laundry One there's never a time when your laundry is a hundred percent done, which is a real bomber. Because in my life I'm like never only.
Speaker 1:I am the person that, like, gets naked to put it all in the wash.
Speaker 2:You'd be like exactly at one time I just hate one piece of laundry. What's dirty. I'm like no, that cannot work.
Speaker 1:No, exactly anyhow. So that's a whole nother Podcast. Back to what I think it's just like laundry. We're like we're constantly having to wash all over again, right, because we're using the clothes and and there is never this point where we arrive and then laundry is done once or for all. And I think that, whether we're talking about this worth piece for ourselves or our child because, gosh, this whole Worthiness and enoughness conversation is coming up a lot in my life too I guess just accepting that it is, it is a life's work.
Speaker 2:Right, that's so true. And there is one more thing that I feel like is really important in trying to, you know, wrestle with this normal and not chasing normal and being intentional. This is just something recently that I've really started noticing and trying to work on. But, but Disconnecting my view or my emotions of because emory is nonverbal a lot of the times I am kind of putting my own Thoughts and my own feelings where I think hers would be and realizing that she is her own Person, this is her life, this is what she knows, and a lot of the times it's me thinking oh well, she'll feel left out if she's playing with kids and they're not, you know, including her, but really and truly she is so happy to just be watching them. And that's me putting my own feelings and my own kind of fears in that and so really separating the fact that my own emotions, my own feelings are not my child and I shouldn't be putting that on to her and then Thinking that's what's normal, does that?
Speaker 1:make sense. That makes so much sense and really what I hear is that what you're working on in your Own life is owning your own stuff, you know, owning your own emotions and then allowing whatever is there for emory to be there. It makes me think about, you know, similar work for me is really allowing my children to have the experience of their own emotions without trying to fix them. And and it sounds very obvious, you know my clients will say, wow, you're all about feeling feelings. But when it comes to your own child, witnessing the kind of sadness, witnessing the pain, witnessing the trauma as a mom, every instinct is to rush to swoop that child up and and fix it and sue them, and that is more harmful than helpful. But I'm telling you like I've been practicing that all year and my therapist Well, actually, it's somebody else's therapist that that witness is this is Telling me that I'm doing a much better job. So I'm very thrilled about that, about a ground taken there.
Speaker 1:There was another piece that you talk about this surrendering control in terms of living your whole life and being a mother of a medically complex child. What are those things that tempt you to most? Take back that control.
Speaker 2:I Would say, kind of what we just talked about a little bit, is that seeing her in pain, seeing her struggling, seeing her Just going through these really traumatic medical interventions, I just have that instinct to just Fix it, just do everything I can. You know, I went through a phase where I was in my most, I would say, controlling as you know we've already talked about it's an illusion, but I thought I was controlling and I was researching day and night. I mean I was on PubMed and, like you know, all of the, the very scientific things, researching, rubenstein-teddy syndrome, researching, I mean just anything I could get my hands on to bring to doctors and say have we looked at this? Can we do this? And it was this constant feeling of I have to fix it for her. And that is when I find myself at the most Grasping for that that pretend to control.
Speaker 2:And I would say, another time is when Everything is going kind of chaotic in my own inner dialogue, when I am struggling the most with anxiety or I'm really not checking my own you know, like we talked about owning our own issues when I'm really not being intentional, checking myself and my believing lies and I really buying into and Feeding my anxiety instead of trying to really talk myself through it. And so those times where I'm not doing a lot of those intentional things, mm-hmm, I find myself just, you know, because that's my default, it is my default to go back into that control and back into that chasing. So when I'm not being intentional about Seeking out time especially this is probably one of my biggest takeaways from this last year is Telling myself that it is okay to take time away for myself to really and truly Build those goals and be intentional, because you can't be intentional if you're in constant fight mode. You know, and that's kind of what. A lot of the times we do feel like we're in that survival mode and we're in that fight or flight mode.
Speaker 2:And so I have made a really big change in the last year and we have been so blessed to finally have nursing care for emory a couple days a week and instead of doing all the things that I know I in my head I have this list you know laundry, I need to pick up the groceries, I need to. You know all those things I I'd tell myself those things can wait. What really can't wait is my time to decompress and really and truly Focus on my own issues, because that's where the real work Happens and that's where you can finally switch out of being in that survival mode and really be intentional. So I think that's probably the biggest takeaway of my last year has been, in order to be intentional and in order to find that piece, I have to make time to be able to create that, and so that's, I think, so huge for especially Moms that are in that survival mode.
Speaker 1:Oh, my gosh, yes, and again I thank you for being a model of this to this community and even just described. I was gonna ask you like so what does this look like to bring that intention? And Also, we get to see a little bit of this on Instagram, or even I don't know if it was yesterday or today where you're like hey, I got, like I think you were at therapy, I'm not totally sure and you're like oh, what do I do with this?
Speaker 1:time, which I so related to this, because you like, I have an hour. I Could do like a million things right now, but for you you're like, hey, I'm gonna do the thing that most fees me, and for you that was reading your Bible and Really just it's. This is where it's like it takes that little bit of intention to get you into to action, and then it's like you get carried from there. And so what would you say to somebody that's like, okay, yeah, I'm in and I'm having a hard time getting started. Where would you have them start? What were your baby steps?
Speaker 2:My baby steps were before we had a nurse and it was just me and Emery, 24-7.
Speaker 2:My baby steps were putting her in the car, because that's one place where she was okay for you know, 30 minutes.
Speaker 2:If I was really lucky she would take a nap, which rarely ever happens. But that was my baby step was like putting her in the car seat, going for a drive for 10, 20 minutes however long I could get, and I would listen to a podcast or I would listen to audio Bible or I would just put something in that would feed me enough to get me through that moment. I mean, I remember driving around with her at like 3 am it sometimes, because she was just so upset, the car soothed her a lot of the times and so we would just put her in the car and drive. I don't necessarily recommend that, like there was some sleep deprivation going on there, but it got us through that moment and in those times. But yeah, that was my baby step, just Finding the smallest moments possible, and sometimes I would just put an air pod in while I was walking around cleaning and just anything small like that that you can Actually take control of and change your day.
Speaker 2:That's huge and it might be baby steps to you, but that's that's where I build it. I built everything from there.
Speaker 1:Well, I think what you've modeled is also like it doesn't always look the same. It doesn't look like getting up every morning and doing the same thing every morning. It looks like a constant curiosity and seeking of okay, what do I need right now? And then you figure out how to give that to yourself. So thank you for again giving us that picture. Well, we're gonna start to wrap up here and I just kind of want to open it up. Is there anything just that's been on your mind a lot in the recent weeks or months, or is there anything else that's just on your heart to share today? I?
Speaker 2:would say Going back a little bit to where we talked about. My Emotions and my feelings are not emory's. That's where my work has been especially, I would say, like the last month, really and Truly just trying to realize. I'll give you an example to kind of walk you through. This emory is light sensitive. That means that she is not comfortable Just going outside. We can put sunglasses on her. She won't keep them on most of the time, but even sunglasses aren't dark enough for her to be able to be comfortable.
Speaker 2:And I was actually talking to my therapist about this and I'm just expressing I as a new. You know, mom, when I was pregnant with emory, I just I love outside, I love the Sun. It just absolutely feeds my soul. I love nature and that is my things. That is where I want to be at all times.
Speaker 2:And then to have a child who is light sensitive and Is not comfortable outside, that was a huge thing for me. But I realized that I was feeling sorry For her not being able to enjoy outside. That's never even press her mind because that is not a comfortable spot for her. Her comfortable spot is inside and playing with her toys and, yes, she loves being outside. We take her outside in the evenings and she loves it. She gets it at that that point in time.
Speaker 2:But I was really having sympathy, you know, just thinking if I were in her shoes I Would want to be outside, but I can't go there, that's not her and that's that's me, and so really separating out the fact that this is her life and this is how she's living it. She doesn't feel like she's missing out, she's loved fiercely, she is spoiled and has a million toys inside and she isn't just really joyful and happy child. And I realized I was really not giving her enough credit for Really and truly knowing what she likes and dislikes and what, what makes her comfortable and what doesn't make her comfortable. And so that would be my really biggest on my brain lately is just really working on separating myself out because she's her own, her own child and her own human. And that's where my work has been.
Speaker 1:Well, thank you so much for pulling back the curtain and sharing that with us. It really, for me, points to the grief work that we have to do is as moms of our children. Because what I hear is, ultimately you have to grieve that your daughter will not join you in your love of outdoors and Like it's funny, as you were saying that, I was like, yeah, like I was the mom that pictured my whole family Backpacking in the backwoods of the CRS. We will not be doing that as a family. I have to grieve that, you know. I have to grieve that all the different things that I thought I would be doing for me Will not be. But I love how you're really really getting clear about that doesn't mean that your child is grooming the same thing, yes, and allowing yourself to just be separate. Gosh, that is so good. Thank you so much for just Probably even pointing some, some moms towards that direction, where maybe they haven't thought of it that way.
Speaker 2:You know, I'm six years in and there are so many seasons where you just can't think there, like you can't get there and that is okay. I really think right now I am in a growth season, but there were times where I was just in this absolute survival season and Honoring what season you're in and what you can do at the moment. I don't want people to hear this and think, oh man, I've got so much to work on now because, oh man, I think about myself like just three years on to our journey, I wouldn't have been able to, I didn't have the capacity. So Honor what capacity you have and start from there.
Speaker 1:I can think of nothing better to end this conversation on. So Honor your capacity and start from there. Thank you so much for bringing all of you here today. It was an honor.
Speaker 2:It was an honor being here and I appreciate the opportunity.
Speaker 1:One more thing before we officially, officially wrap up this show. Sometimes, when I'm listening podcast, I have the experience of wanting more. I'm listening at the very end, thinking I sure wish that episode didn't end. I Invite you. If you feel in any way the same way, I invite you to the special needs mom podcast community, which is a free group that I host on Facebook, where we, as a community of fellow moms who listen to this podcast and are experiencing life in similar shoes, get to talk to one another, get to share stories, get to actually interact. I hope you'll consider joining. See you over there.