And today I'm welcoming Becky Tilly to the show. Hi, Becky. It's so wonderful to have you here today. Hi. It's great to be here. Thank you. Becky, I just love what you are, what you stand for, and what you're doing and embracing your own uniqueness and you have your own personal story, so I would love for you to share that with us.
Thank you. Well, yeah, embracing my own uniqueness was a long time coming. It took a good 38 years and it was actually thanks to my son being born with a rare chromosome. Issue called, uh, hypotonia, which is low muscle tone. So they all said in NICU that he had floppy baby syndrome, which was really frightening at the time.
Um, cuz two weeks into that the pandemic hit as well. So my anxiety and my fears were all through the roof and this led to a whole 18 months of [00:01:00] blood tests. Specialist consultations. And my husband and I were just thinking, you know, we already had a daughter at the time and we thought, you know, we're all, we're all okay.
Like we don't have any rare disorders or anything. Like what could it be? And we were all wondering and questioning. And I didn't think for one minute that we would have any relation to whatever my son had. So it was an enormous shock when 18 months later I saw my phone flash up with geneticist on it. I thought, oh my gosh, why would she be calling?
And then I realized she's, she's got a diagnosis. I had that like gut feeling that she had it. So it wasn't enough to hear. We've diagnosed your son with Koolen-de Vries syndrome, which I'd never heard of in my life. Mm-hmm. So just before I had a chance for that to settle, she said he inherited it from you, Becky. And that was honestly, I think what felt like the biggest shock [00:02:00] of my life.
This rare chromosome disorder I never heard of that caused my son so many issues for his first year of life needing physio and. You know, the blood tests that you had to have. And so I was blindsided by guilt and also complete shock. Yeah. All at the same time. But it actually all at the time it was a breaking of me, but it became the making of me and opened the door for me to fully accept myself and everything that made me different.
And you had your own. Kind of symptoms of this growing up, you just didn't have an actual name for it? Yes. Yeah. I mean, once we were diagnosed, I Googled, Koolen-de vries immediately to think, what are we dealing with here? And I thought, and is there anything that, that I can connect to was anything that resonates with me?
And as soon as I saw a developmental delay, moderate to [00:03:00] mild, mild to moderate intellectual disability and. Learning difficulties. I just went back in time to my school days. All the struggles I had with math and English, being in special educa education classes and being bullied. A lot of frustrated teachers and I thought, wow, that all makes sense.
And something I should also mention is at the time of the diagnosis, I was actually four months pregnant with my third child and was informed that she also. I had a 50% chance of having KDVS too. So it's kind of like a triple diagnosis when you think about it, because she does actually have Koolen de Vries as well.
So really the three of us were diagnosed pretty much at the same time. That is so much to handle all at once and I think that, I love your overall, you're very, you're such a positive role model and I know that's what you're trying to be for not just your kids, but the community in [00:04:00] general.
And I just, yeah, absolutely. Yeah. That's so important. But once again, like looking back at your own path, how did it feel to actually have like something that may give you some reasonings why things were happening even in your childhood? It was actually really freeing because I always begrudged what made me different and I saw it as a reason to be against myself.
I felt like all the negativity and bullying I got, I kind of internalized and I saw, I would say the same things about myself that they said, I don't in, I can't achieve anything. I'm stupid. All these things I kind of labeled myself as and created my identity around. Were all turned on their head once I discovered, guess what?
These two little kids who brought into the world, they've got the same thing you have. Mm-hmm. So how am I gonna show up for them? And I [00:05:00] knew that when I was a kid. I never had a role model for the syndrome that I had. I never had a role model for how to look at being different in a positive light. Or the fact that I didn't learn the same as everyone else.
I had no idea how to see that positively or be remotely empowered by it. Mm-hmm. So I thought, well, this is my, my chance and my opportunity to give my kids the start in life that I never had. Yeah. I love you kind of rewriting the story and making it Yeah. A positive story, not for just. You know your children, but also for yourself to embrace that uniqueness.
So I guess one question is, You know, when we're told so many things, like it sounds like you had some bullying and a lot of challenges to go through. Yeah. How do you rewrite the story to take out all those other stories get rid of those voices [00:06:00] and now look at it differently? Yeah. I did it in the most literal sense. Mm-hmm. That can be quote, spoken investigatively to rewrite your story, but I, I literally put a pen to paper and did that because regardless of my struggles and being in special education classes for English, it was my favorite subject.
As a kid, I love to read and write so much. Even wrote my own little book with little cartoon animations, I drew with it, so I wrote my post. I first met when I was about five years old with dreams of being a writer. So it's funny because I lost sight of that dream for so many years, just doing nine to five, going from job to job, and I hadn't thought about writing for so very, very long.
And then later in life I was told, You've got really encouraging nature. You're really nurturing. Yeah. And for some reason I thought, oh, maybe I can send you a message of [00:07:00] encouragement cuz they're having a down day. I said, Hey, and here's the message of encouragement for the day. Keep going. And they're so appreciative I thought, oh, I should start doing this.
So I send family and friends like weekend encouragements, that kind of thing. And some appreciated it. Some were driven mad by it, but like I knew it was something that was on my heart to do. I was like, God, I'm really enjoying this. This kind of makes me feel like it gives me a purpose and I feel fulfilled by it, and so I kind of kept on doing that.
And I didn't really realize at the time how powerful rewriting the story is. And it wasn't pretty, it was not at all a pretty or easy process to do. I actually followed a program called, self-Authoring by Jordan Peterson. Mm-hmm. And I took a deep dive into my past and took all the significant events I analyzed and went through.
[00:08:00] Line by line, the things that injured me, the things that made me feel like an outsider that I didn't belong. Um, and I really got in touch with the hurt that caused me as a child. And I think being so connected to that hurt really drived me even deeper into, okay, how can I make this better for my kids?
Mm-hmm. How could, what can I do so they don't have to feel, I felt as a child, it didn't just affect me as a child that. Negative start in life followed me right through to adulthood. I had the same issues at work that I had at school in some ways in terms of how people would view me. Um, so I've just turned my weakness really into a strength in terms of like, I believe I can help so many people because I don't believe you need a rare disorder to feel like you don't belong in this world, that you don't have a purpose or that you don't fit in.
I think that insecurity and [00:09:00] that fear of not belonging, I think is in everyone. Yeah. So I think, wow, if I can use my story, I've rewritten to one of empowerment and like you say, owning what makes you different with. Joy and passion and purpose. If I can do that as someone with anxiety disorder then I really trust, I know it sounds cliche that anybody can as in yeah, a living testament to what is possible, but you look at my background and the disorders that I have, you know, if I can make that happen and turn myself or my life around, Then I really hope that at least provides hope to someone else that it's possible for them too.
Yeah, and I think that's so important cuz people, when they see somebody who's so relatable like yourself, who has these challenges, who've heard these stories and have overcome. They're inspired to do it too, so I totally agree. You know, it's kind of like [00:10:00] very different, but I remember saying , I'm not a runner at all.
Like I'm terrible, like yes for kid in my class by far. Right? But I ran marathons and my thought was like, whenever I had friend, like it's not, not fast back of the back, but, but whenever I have a friend that was like, oh, I wanna run, but I can't do it. I'm like, if I can do it. Yes. Yeah, completely. And it inspires other people to do things that they don't think they can do when they see somebody do it.
Right. Just like yourself, yeah. So what do you wanna tell those people out there who are listening that have some of these insecurities, that have really kind of probably slowed them down in life, not really going forward to do that thing they wanted to do, or not seeing themselves in that positive light?
I would say a huge part. Is to, even if you don't rewrite it as in Pen paper, but in your own [00:11:00] mind. Mm-hmm. You know, take that dive into your past. Ask yourself the identity I have today, where did that stem from? Who contributed to that?
Who labeled me from a young age? And does that sit well with me? Do I want to own that as my identity? Because I didn't just do it all through book writing. I've had. So much therapy. You know, I've spoken to a lot of counselors, put it that way. Um, and a lot of it has been to do with past issues and so I've really done so much in a work.
So I love to say there is an easy road or a lift to, to get to that place of, of self-acceptance and better still being able to inspire people through it. But it, it is honestly a very, very long. Road and I would say you really need to find a purpose greater than yourself and your [00:12:00] story to drive you to make that change.
You know, for me, a big part of that was my children. Mm-hmm. Is all I had to do was think for two minutes of them repeating what I went through and I couldn't, I literally couldn't live with myself if I didn't step up and do my part. Mm-hmm. For them to have a different start to what I did. And I just use that.
So what, whatever reason you can find, whether it's your children or just maybe when you look at your life, and maybe you'll think after doing the counseling and digging into your past life. You know what? I've wasted so much time and I've given so much power to other people. You know, everyone's road is different, so someone's.
Else is part of this place could be very different to mine. Mm-hmm. And maybe you might get a revelation of like, you know what I, I'm not owning that label anymore that people have put on me. I define for myself who I am. [00:13:00] But yeah, for me, for me it took, it took years. So I would say to be prepared, it is possible, but to be prepared for how long and how hard that road will be.
Yeah, and I hear so many things in this, like, first of all, finding your own purpose, right? Which I think takes a lot of inner work in itself. Just finding, yeah. What is that purpose that you're striving for? Exactly Whether it's for your kids or whether it's for yourself. To be fulfilled and and feel good about yourself so that your kids see that.
Right. Because our kids are watching us. Yeah. And we are role models. Or maybe it's a certain people you do wanna help or a certain skill you wanna have whatever that purpose is. I think that's such a core part because once you can find that, then it's easier to rewrite that story.
Oh yeah. Yeah, [00:14:00] 100%. I mean, it's kinda evolved over, over time. I mean, at first I just wanted to support and encourage others in the rare community, other parents. And with children like. Like me who had the same disorder I had, I just wanted to be there for them and offer hope and encouragement, which I'm glad to say I succeeded at doing.
And then I thought, you know what? I really think I can take this message further. Because I, I adore being a mom. It's like the greatest gift, you know, I, I love my family to, in words that I can't even describe, and I'm very wordy. But, I also wanted, To create for the first time in my life, like you said, for myself.
I wanted my own identity as a strong, empowered, not just mother, but woman. I wanted to be a strong woman in my own right. That could empower other women, whether they're mothers or not to, like I said, to look at their backgrounds and define for themselves what they stand [00:15:00] for, what they're about, and what they want their future to be.
You know, I just decided that. I'll continue to inspire the rare community. It's like where I find home, but I want the world to hear this and to see what I've achieved and who I've become and how I've turned my life around. So, because I mean, I think it's easy. Like I said, as a child, I thought I'm less than everyone else.
I'm the one that's, that can't learn this or can't learn that, or is different. But actually I think we've all got our own inner. Battles and in a self-talk that makes us feel kind of low or down or like we can't contribute to this world. And it's just that message to say, you can, you do have something, as you have said that I've read before.
You do have a gift that's in, inherently inside all of us. There's something inside of you that only you can offer. And if I can help encourage someone to tap into that, then wow, [00:16:00] that's like my, my mission fulfilled in a lot of ways. I love how you said that we have to look to where those stories started, right?
Yeah. Started. You know, they, who are we actually listening to? Like, was it you're listening to that bully that doesn't even know you? Or was it stories passed down from our, our parents that are, were just trying to do their best, like, so insignificant and, and really who we truly are, right? So, Yes, they play a part and yes, it's in our subconscious and in our cellular layer even.
Right? But I love that fact of really doing that work. And it is work. Let's all put it out there, right? Like Me too, me too. Like I started doing this work probably late forties, early fifties, right? I'm 50 now. Yeah, working [00:17:00] never ends, never end. And that's an important piece too, because we need to keep rewriting our story.
Just like you said, right? You started this mission to help the community. But now you wanna take it out to more, everyone can be learning from it because we're growing. Yes. And it could still keep being written so important. Yes. And I think that's, that's such a key thing you picked up on, is that it's ongoing.
I think the biggest mistake is to say, ring a bell like you've made it. And then get complacent because it's that humility as well to accept that even with all the inner work and it's so important to acknowledge how you've changed and where you've changed and like you say, use that to be a light, but to know that.
It's an ongoing daily process and you always, [00:18:00] you need to continue to show up for yourself every day because you never know, like from my experience with the diagnosis, you never know what life's gonna toss at you next, and you need to be ready, as in, you need to be continually working on yourself and that growth mindset and how to stay secure in yourself and moving forward with purpose to be able to.
And endure more challenges that come your way. And I think the more you keep at it, then the more stronger you become for whatever hurdles that will, that will inevitably, I think come next. And I feel like we can't be afraid of those hurdles, so easy to be afraid of those hurdles.
But I think the scariest thing, someone once said this recently and it, it. It is the scariest thing. If the scariest thing is to look back in a year's time and see yourself in the same exact place that you were a year ago. Yes. It's less, right? Yes. It's less scary to [00:19:00] look back at yourself a year later, even if you didn't move ahead and you moved a little bit behind.
But you moved. You moved, right? Oh percent. Yeah. Yeah, absolutely. I mean, so don't, don't be afraid of those hurdles. Those hurdles aren't important. Whether you move back a forward Oh yeah, yeah, completely. And I think, like you say, the greater the vision you can create in your mind and your purpose of what you wanna do and achieve and become, then the less those fears take hold of you.
I think my anxiety, like I said, disorder, I've had it used to be so crippling and so. Extreme, but I think the reason why it has so much less of a hold is because I'm continually making my vision bigger, my mission bigger, my purpose bigger, so the, the bigger that I grow in terms of my personal development and what I wanna create in the world, then the smaller that becomes, [00:20:00] like you said, it doesn't become this big dominant fear that's, that's holding you back and keeping you locked in a place in the past.
You don't wanna be, you can. Keep running and keep moving forward into, you know, you're either running towards something or away. You're either moving towards something or running away from it. So I think the more you can move towards and have that man mentality of, this is what I'm heading for, this is what I want, this is what I wanna create, then the less the past has a chance to get a hold of you like it once did.
So you're doing this role modeling, not just for your kids, for but for everybody, but what do you think you've now, in your new purpose, what have you put out to the world that you want them to learn and see? I know it sounds really simplistic, but that you are the narrator of your story because I think in daily life we can completely lose sight of that. Like you say, I don't think anyone generally speaking in [00:21:00] life is conscious of why they're the way they are. Or maybe they.
Or maybe they do know, maybe they do know. You know, it's because of my past, it's cuz of what my parents thought about me or the kids at school and, and this is why in the way that I am. So maybe they are aware of it, but they don't grasp the fact that they can change it, that they can rewrite that and become someone new.
So I wanna be the voice and the example to those people, cuz I think that's the most important thing is. I know when I wrote this book, I just said a hundred percent I need to be ready and willing to live by these lessons as I'm teaching. You know, because that integrity is so key and important to me, and some of people ask, you know, they hear my story and they say, so you got KDVS and your kids have.
What are you so happy about? Like why are you, like, why are you smiling? As in, you know, and, and it's because, [00:22:00] um, it's because of the inner work I've done. It's because that narrative that used to hold me back and keep me small and and afraid, like you said, and anxious and terrified to express myself to the fullest that's gone.
Like I am, I am free and. Enjoying expressing myself in all my fullness. And I just think so why wouldn't I? When I've reached that place emotionally and mentally and spiritually, now I'm here and I know all of the blood, sweat, and tears to get here. How could I not be ecstatically happy with the smile on my face to reach this place of freedom within myself?
And I just think so, like you said, it's another way of saying you can have that too. Maybe right now life's a bit of a mess. Feeling as in like, you know, nothing to be really excited about, but you can like, and you can create all of that within yourself and the visions you create for yourself.[00:23:00] I feel like you, you should answer those people who ask you why are you happy?
I would say, because I'm the writer of my own story, I. Yeah, that's a great, that's a great answer. And I literally am, yeah, exactly. Doing right. So of course I'm writing a positive version of my story. Why not?
Yeah. Hard, painful version. So I wanna rewrite a version that's gonna free me from all that and to, you know, create something new in my life. Totally. One thing I, I do love about you is that you put yourself out there, you just strongly stand out and say This is who I am.
And that's very infectious. Like that's contagious. We wanna be like you. Like I wanna have that confidence too. But I have to ask like, cuz it's hard, it's so hard to put yourself out there and just be you. So like is there a secret that you [00:24:00] have? Cuz I'm sure it wasn't easy to do that. So is there a secret that you have that you're just like, here I am.
I'm here. This is me. Love it. Or leave it. Yeah. I think I know the difference now I, I know what it is to be afraid. And you terrified to kind of express even a little bit of who you are. I know what it is to blend with the crowd to stay. In environments and in company that is detrimental to my health and wellbeing, just so I'm not alone.
I live that. And now I can take an outsider's perspective by rewriting that narrative and saying, do, is that something I want going forward? No. No. Isn't like, all I've gotta do is, is take myself back there, have all the feelings that I once did, all the fears, insecurities, remind [00:25:00] myself of how that felt.
Remind myself. The person that I was when I had no freedom in who I was, and I'm like, there's no way in hell that I'm returning back to that as in, so actually the contrast of. You know, being so much less than who I could be is actually what, what reminds me and I, all I need to do is think back who I was and I'm just like, you just keep moving forward, girl.
Do you just keep going? As in like, I'm not returning there for anybody. I only said that to my husband today, as in like, as in, I wouldn't care who anyone was. I would not return back to that for, for anyone, I think, and that is where my strength comes from. Oh my gosh. I love that. And it, it, it really inspires me to do the same.
It really does. Aww, thank you. Even though I'm out there, right? Like I'm out here, I'm on a podcast, I'm talking, I dunno all the time, I'm putting myself out there. It's still [00:26:00] scary. It's still scary. And I still find myself trying to figure out who I am. Like, oh, is this really me that I'm putting out there?
Cause I wanna put out me. Yeah, yeah. But trying to find that me voice within all this is sometimes yes. Sometimes challenging. Yeah. Yeah, yeah. Completely. And like I said, it, it took out, it took. So long, and I, and I never want to be, you know, false about that. In, in terms of the work it took, which is what I write in my book as well.
I talk about my childhood, I talk about the negative influences that I've had, talk about having no positive role model as a child and how it affected me, not just then, but in adulthood. So I've really spoken about my journey. So you really see in my book my evolution from my childhood to becoming a mother.
To how that inspired me to find myself, because I wanna teach my kids to stand in their light as their, you know, not just as a parent, but as like [00:27:00] their own individual. So again, I've had to do all of this myself, but it is, it is the best thing I could have ever done. And I've, I'm really loving, loving being myself like I never have before.
And how do you see that? This has affected your children. What do you see them doing that maybe they wouldn't have done without you doing this role modeling? They're, again, there's such free, happy souls and something that my son. Josh who has Koolrn de vries.
This really touched my heart and his perfect answer to your question. Something really sweet cuz getting so full of love and life and laughter. And I went to drop him off at nursery and. Obviously there was a gate and there was the front garden and she turned to all Josh's friends and said, Hey everyone, Josh is here.
And I thought, oh, that's like announcing survival kinda thing. And she said, oh, I had to tell them because Josh goes around and gives everybody a [00:28:00] morning hug and gate.
And she said, oh, he even gives one to the staff as well. And it just, It absolutely melted me like I was like happy tears kind of thing. It was just such a beautiful thing to know that everyone at nursery couldn't wait to see my little boy in the morning and have the morning hug from him, and I just thought, Again, he's such a free, happy little soul.
He just goes in and he's himself, he's got so many friends. Um, which, which again is, is a joy because he uses sign language to talk to all his friends, and they've just all embraced him. And even after Nurse Nursery will be walking along the road home, and then you've got kids going, mommy, it's Joshy, it's Joshy, and a waving to him kind of thing.
It's like, My boy is so loved and he's so, so accepted, and you know, he's such a special part of that nursery, and like that just for me is like, I couldn't want for more than that. As his mom knowing, [00:29:00] knowing the syndrome that he has for him to be, for him to have that belonging and that love where he goes to every day is like, it's such a, a beautiful blessing.
And what I'm hearing is that he's as positive as you. So job well done, like spreading. You wanna like spread all this to the world and he is doing it within his own classroom. Yes, that's true. And I do, and I'm always. Always encouraging him and building him up and celebrating progress, whether it's an inch or a mile.
So he, he knows he's loved. He goes to, into nursery knowing he's loved, that he's celebrated. That he's encouraged. And I think so as soon as he gets through the door, he, that's what he's giving out. He's giving out that, that love and encouragement he receives himself. Uh, beautiful. And it's a reflection of what you're teaching them.
Yes. Yeah. So, okay. You mentioned rewriting your own story and [00:30:00] actually rewriting, like writing a book. So tell me a little bit more about your book. What's the title? Where can people find it? All of it. Oh yeah, it's on Amazon. It's called Thrive Rare. Embracing the uniqueness within, and it, again, it kind of evolved with me, to be honest.
I planned on doing a quotes book cuz I love to write quotes. I love looking up Pinterest quotes, like motivations for the day. So I thought, oh, I'm gonna write my own. So I wrote literally one for every day of the year, um, on a mix of faith, love, and life. I just wrote something and I was gonna call it Mama's Heart.
And then I thought, actually when I looked at it, just seeing a list of quotes, page after page, I thought it looks a bit bare. And, and I just wondered what, what I could add to it to personalize it a bit more. Mm-hmm. So I thought, you know, I'll add a life experience or thoughts on life experience to go with the quote.
So I did that and I thought, you know, people really need a takeaway from all this. They [00:31:00] just wanna read a page and then move on to the next. So at the end I write something to remember, which is that little thing that, that little nugget of wisdom someone gets to take away and think. Right. So that was the message.
So, And that is what I can take from that and think about and see how I can implement that in my life. So it became like a self-help memoir in a lot of ways, and I absolutely loved writing it. It was an absolute joy and it's something that I'm extremely proud of because I've looked up different, um, self-help books and self-love books and those kinds of things.
And there's a lot of wonderful books out there. But none that have been written in the style that mine has or by somebody with koolen de vries syndrome. So it's, it's really incredible that I've kind of given something literally to the world that anyone can read from any walk of life or any country, whether they're in the rare community or not, just something for [00:32:00] them to take from my life.
To, to say that you can be like, said the narrator of your story. This is how I did it, this was my journey. And it obviously ends with a conclusion of how I became the woman I am today and what my message is now. And yeah, it's like even talking about it, it's like, oh, it was, it was my labor of love.
Amazing. I mean, it sounds. Very powerful. So I, I'm definitely gonna check it out. I'm excited about it. Aw, thank you. Yeah. And what if people wanna connect with you, where can they find you? I'm on Instagram, so thriving rare on Instagram.
I've got a Thrive Rare Facebook page. I've got a Thrive Red YouTube channel now, which I call Thrive Tube, but that's just me naming it, something cute. And I've just joined. Twitter as well.
So four platforms now I'm on. Awesome. They can reach you on any of the above
what would you like our listeners to hear? What [00:33:00] message do you want them to really walk away with from today?
Just that you have the power to decide how your story is gonna continue. You know, maybe, obviously none of us had the power or can kick the power into going back to our past and rewriting that in terms of at least going back. Literally, but you can rewrite what it means to you in the present. You know, I, I took the deepest dive, as I said into my past, and I've written it now in a way that's empowering my present and giving my future of purpose.
So even the darkest times, the loneliness of times, the most traumatic of times from your background, because I think so many of us can use that as a reason not to move forward. Because of what someone said, cuz of a traumatic life experience and it can easily keep them stuck. So I just want to [00:34:00] remind everyone you that you can get unstuck and it's the most powerful thing you can do because only you have the keys to making that happen.
Only you can do the real work. People can hold your hand and walk you through that process, but ultimately it's on you as to how you change your story going forward. So that power is within you. You've just gotta decide to take a hold of it. Exactly. I mean, don't let others write your story. Be the of your life,
yes. So thank you Becky, for coming on. I have to tell everyone that you are awake at What time is it there? It's midnight or 1:00 AM I don't even know. 2:00 AM in the morning. Yeah. Yeah. So what people don't understand is like when you are recording from across the world, people like you, Becky, that are so committed in getting your message out are awake at 1:00 AM to do that.
[00:35:00] Yeah. So thank you. Oh, it's been an absolute pleasure, honestly.
