SPEAKER_00 0:10

Welcome to Mom Sprain is a Coffee Stain, the only podcast clinically proven to raise your blood pressure and your dopamine. I'm Kayla, Millennial Mom, current chaos coordinator of two spoil giants who think budget is a TikTok sound. In this episode, I had the opportunity to talk with Flara Bryant, a mother of three, coach, speaker, and author of the book Never the Plan. Her journey has included motherhood, disability, years of being misdiagnosed, being a caregiver, and losing her son Toby after his diagnosis with a terminal brain disease. And learning how to keep living while carrying grief alongside her. Well, let's jump on in. And for our listeners who are meeting you for the first time, can you tell us a little bit about yourself, your family, and the journey that ultimately led you to write Never the Plan?

SPEAKER_01 1:18

Absolutely. I am 43. I have three children, and I, over the last three years, have been writing a book called Never the Plan. I started the book after my middle child, Toby, was diagnosed with a terminal brain disease. And it really was, I guess, the start of the journey in terms of learning about life really not going to plan and how to deal with that moving forward. He was an incredibly special little boy, and he taught me so much. And he didn't just teach me about how to deal with what was going on in his life, but he also taught me how to deal with what was going on in mine.

SPEAKER_00 2:07

That's wonderful. And I'm so sorry to hear about your son. And yes, ma'am. You've experienced caregiving from a unique perspective. So caring for your son, Toby, our listeners may not know, but you are also navigating your own disability. So what has taught you about the difference between being strong and feeling like you have to do everything on yourself or you have to put everything on yourself?

SPEAKER_01 2:34

I think the best piece of advice I was given was after Toby was diagnosed. And I don't think the doctor at the time realized the advice that she was giving, but she said to me to get our network around us as we learn to navigate what we were going through. And prior to Toby getting diagnosed with this disease, I had had to homeschool him. He was showing a lot of autism and ADHD traits, which are, I now know, common with the ALD that he was diagnosed with later. But I had I had 18 months after COVID where I homeschooled him, and that was incredibly tough. And I wasn't very good at reaching out to people and saying I needed help or getting more people in to support me. And I really struggled and I really sunk to quite a low at that point. And through Toby getting diagnosed and that piece of advice, it was so amazing to see the difference because although we were dealing with such a nightmare situation, I was able to get people in to make the 18 months that we did have with him after he was diagnosed to be him living fast and hard. And also for me realizing that I didn't, as his mum, I could also being his mum with a disability, I couldn't do everything with him. And actually I learned I didn't need to be the one that do did everything. I needed to be the creator of his life. And also that it's not possible to do something 24-7. And you the the phrase is old, you can't pour from an empty cup, but it is still relevant because it is so true. And I tried to do that when I was homeschooling. Um with Toby in his ALD journey, I learned through that piece of advice, sort of getting that network around me, that I really did need to get some support. And that support made all the difference in the world. It allowed me to be a better mum because I needed some space to process what was happening, but also to support my other children. And it just made such a difference on our journey.

SPEAKER_00 4:53

Yes, that's wonderful. And it's like you said, the phrase is old that you can't pour from an empty cup, but it is so true. And I think at some point, you know, on some level, most moms and even probably dads have experienced just like we call it caregiver burnout, you know, and it's you try to be picture perfect and do everything yourself. And you you have this idea in your head as a parent of, okay, I need to be creating this memory and this memory. And especially in your situation where you have such limited time, you want to do all these things. Um, and I totally understand what you're saying, where you said you don't have to do all of them, you just have to be the creator of all them. And I think that's wonderful that you were still able to give your son those those memories and experiences. That's amazing.

SPEAKER_01 5:45

Yeah, absolutely. He he had the best time. He he just loved to have fun, and it was amazing knowing that he was having fun even if I couldn't be there um all of the time.

SPEAKER_00 5:56

Yeah. Absolutely. And so you've spent decades being misdiagnosed yourself. How did finally having answers about your own disability change the way you understood yourself, your body, and even the way you approached motherhood?

SPEAKER_01 6:12

It changed everything because I had been originally diagnosed with cerebral palsy, which is supposed to be a static condition. And so in my legs getting worse, I thought, well, if it's a static condition, it's me that's the one that's at fault here. If I'm doing something wrong, I'm not doing the exercises I've been given right, or maybe I'm doing something else wrong that I haven't even worked out what that is yet. But it made me feel like a failure because I just couldn't understand why I was going from, you know, being able to walk to getting progressively harder and harder. So eventually getting my diagnosis, I think in some ways you'd call it a relief that I now understood what actually my profile was, what actually was wrong with me, and why I had been struggling so much. But I think equally it had it had difficult elements as well, because in the process of diagnosis, I was actually diagnosed with two genetic conditions, one of which was what Toby subsequently got with his ALD, the female version doesn't create the cerebral symptoms. So it's not a life-limiting condition as it is in boys with Toby. But and it's for me as a secondary condition. But my primary condition is a condition called a registrary spastic paraplegia. And essentially, it's like a medical version of paralysis. I I liken it to somebody getting a knife and very slowly cutting through my spinal cord, and because that is the effect that it's had on me. But I have um passed that on to my eldest son, who is now in a wheelchair as well. So navigating thinking that I had a condition that I couldn't pass on going into children with that, and then actually coming out of it with two conditions of which I've passed both on has been a difficult one to process. But I also I try to, even in the hard moments, think that guilt really can only come with intent. And I didn't know that I had these conditions, and so I have to learn to live with them. But it is a question of having to learn to live with the knowledge of what that what they have um have been as a consequence.

SPEAKER_00 8:29

Yeah, absolutely. And I think, you know, you said something in there. It's like, and one on one hand, it was uh almost like a relief because, like you said, you were doing all the things with ALS that shouldn't be making your ALS like progress as fast as it did, and you were doing the exercises and things like that. Um, but because you were misdiagnosed, that's why you were progressively getting worse. And it's almost like, okay, I'm good, I'm not crazy. Like it's I I can take this blame off myself. But then you had like a whole new world of issues that opened up because it's like, okay, I'm not crazy, but now I need to pivot what I am doing, and this is now the avenue I need to go down. And I think that's remarkable that you were able to make that pivot. And I think a lot of parents, especially mothers, um don't maybe look at it that way when they could have like challenges in their life, is making that pivot. And I know this is a different situation because being misdiagnosed, but I know, for example, with my son, when he was younger, um it was always constantly like, oh, he's just rowdy and this and that. And it was like fighting tooth and nail because he was constantly getting in trouble. And it turns out like he has ADHD, ODD, and dyslexia and dysgraphia. But it took us a while to get the testing done and we had to do IQ testing. Cause actually, I I had one of his teachers when he was in like Head Start say that he was um just an idiot. Yeah. And I'm like, I don't know how you can really say that about a four-year-old, but okay. Um, you know, and and so like we had to do all these types of things. And then finally, you know, when we started getting more and more information, and his pediatrician started, you know, referring us to, you know, different counselors and things like that, and different, like we would go to occupational therapy, and um we were starting to learn like they these are what he has an issue with. And it was helpful because at first we thought he just had ADHD and ODD. So we thought, okay, he's not writing and cutting because he just can't focus. Well, they put a lot of him on a lot of medicine and everything. Well, then it turns out, you know, when he's starting to learn to read and everything, it has nothing to do with that. He doesn't see him the same way. So because he has dysgraphia and dys um dyslexia, that's why he was struggling so much. And it almost had gave me that sense of, okay, I'm not a nutbag. You know, like I uh me saying, okay, something's not right here isn't just me wanting to meet, like, oh, my son has limitations or he can't do this. Um, it's it's literally there's something going on here. But then it was a challenge because I had to learn what I should be doing. You know, what's the best way to take care of my family and still address these issues? And it sounds like you did that and you did it very great, where you were able to not only start taking care of yourself, but still be in there to take care of your family.

SPEAKER_01 11:47

Yeah, I mean, I think in some ways, with my eldest son having the same condition as me, it in a lot of ways it's a privileged position because, and that that will sound crazy, but it does mean that he and I can talk about the condition, we can talk about how we feel about the condition, and we can talk about the issues that we're finding, and there's a lot of matching up that goes on between us, but it also means that I don't give him excuses either. So if he says to me, My legs are sore, I'm not going to empty the dishwasher, then I can say, you know, you've got your chair, you can do it, if I can do it, you can do it. So I'm a thorn in his side as well at times. But it's it so it means that I know when to push him and I know when to to pull back, and that's been amazing. It's and I knew as well, I could see the changes in him. So he's probably been diagnosed earlier than he would have been had we not had me in the mix. It's that's absolutely for sure that that is the situation, and that what that's allowed me to do is to build up his identity that I never was able to have of one of strength. He's he's a massively into racing wheelchairs and he is doing really well in that. And it's just allowed him at the age of 14 to say, you know, I am strong, I am fit, I can push myself and build that identity as he goes into adulthood, which has been incredible. So I say that I have my condition, it comes with privilege and it comes with obviously huge amounts of sadness with it because I wish that I obviously would hadn't have passed it on in the first place.

SPEAKER_00 13:28

Yeah. And that that that makes sense. In a way, it it you created a wonderful connection with him. And it's like you said, you you have a great insight to you, like you said, if I can do it, you can do it. Um, and I I think that's wonderful that you are able to look at it that way. And you know, you said in a way you wish you wouldn't have passed off in or passed on in the to begin with. And I think that that that can go into something where we're all dealing with feeling guilty. And that's one of the things that, like you just said, you know, you kind of put that burden a little bit on yourself, and there's no way to really get somebody can't come in and say, hey, I will mop your floors for you. And that removes that guilt. Like that's not one of those things where I think I need to do everything. So, how how did you deal with that guilt of, okay, I passed this on?

SPEAKER_01 14:30

I don't think you ever have dealt with it. I think it's always something that you're learning to accept and deal with. I find it very difficult still when people do things for me because I would like to be be able to do them. And, you know, I say to my son, there's still times where disability absolutely sucks. And I don't want to shelter him from that. And I want him to be able to have that voice to say that it does. But equally, on the flip side, I now know through everything I've been through, and really through writing this book, that my legs are what's made me. They're the what's given me my determination, my motivation, my perseverance. I am the person I am because of them, and I am the mum that I am because of them, and because of what happened to Toby and now um my eldest son as well. So that when I say that, I know that I need to have some gratitude as well for them. And so that, you know, you have this sort of mixed feelings about them, but I'm really keen to pass that on to Henry to say, yeah, you know what? At times I'm not gonna make it okay when it it sucks because it does just suck. You know, there's moments I would love to just be able to get up and walk across a room or just grab something and I can't. And it's really frustrating. But I just have to marry that with the gratitude and just know that they both have their timing and their place and not try and force myself out of one way or the other when one of them comes up. If it's just sucking for a minute, that's okay. We'll just sit with that. I look at it like waves on a beach that if you try and force them back, they're gonna come and hit harder, is actually just sort of let it come, let it pass, and let it fade out again.

SPEAKER_00 16:19

That's a wonderful way to look at it. And you, you know, you spend so much of your time and energy caring for someone else. Um, for example, Toby, your other children. How do you hold on to your identity? Have you had to remind yourself that you are still you, not just a mom, a caregiver, a patient, or an advocate?

SPEAKER_01 16:41

You know, I love that you asked that because to be honest, that's probably been the biggest driver of the book. And, you know, when I talked about when I was homeschooling, and to be honest, the thing that I struggled with the most was that complete lack of identity, that I was a wife, I was a mother, I was a teacher, you know, in homeschool. And I had forgotten who Fleur was and I felt invisible. And I really, really struggled with that. And I knew that I had to find a way to have a number of different hats on so that I could be mum, because I love being a mum, but I also know that I need to do other things as well. And I now love, you know, I'd love writing this book. It's been incredible. And I've also launched a charity in my son's name, and that's been incredible as well, dealing with families and just creating something that is my own and that I know I'm helping, I'm supporting people that is, and it's just as I said, it's wearing those different hats that I can wear my mum hat, I can wear my writer hat, and I can wear my charity hat. And it's it has just created the identity that was missing before. And that has been absolutely crucial in this journey. Just probably the biggest part of it. And that's why I love that you're speaking about it. Because I think that identity is something that we don't talk enough about as mums, and that so many of us probably do feel like this.

SPEAKER_00 18:11

Yeah, I think that um I experienced this when my son was young, is um, I kind of felt like, okay, well, I'm not me anymore. I'm just a mom. I'm just a wife, you know. Um, and it gets really depressing. And you just kind of you feel like alone on an island. And that's actually one of the reasons why we started this podcast is because we didn't want women to feel that way, um, or any caregiver really, because when you're just taking care of somebody else, you you always put their needs first and you don't really ever think of your needs. And as a mom, I obviously think about moms first, but I think it's so wonderful that you, like you said, you you learned how to put different hats on to what you were doing. And that's so wonderful. And it's important to distinguish, like, okay, right now I'm at I'm doing this charity event. So I'm I'm work, I got the charity hat on. You know, when I'm at home and we're doing homework, I've got the teacher mode on, you know, like and I think that that's really wonderful that you were able to distinguish that instead of being like, oh, oh my gosh, I have to do everything all at once. And I that's kind of what just brings you down, is when you can't separate. Nope, it's okay if I want to sit down and for you, you're writing a book, you know. Hopefully that's cathartic. I like to read. Um, so if I say I'm gonna sit down for 20 minutes and read, that's just something I enjoy. Whereas you like to write, that's something you enjoy. Um, and it's okay to have that 20, 30 minutes to enjoy something that is just for you. And I think we have difficulty accepting that without feeling guilty for it later. It's like I I'm horrible at remembering to switch the laundry from the washer to the dryer. Not pulling the clothes out of the dryer and folding them and putting them away. I'm Johnny on the spot with that. Um, but it's I'll start doing other things like cleaning or going to the store or something, and I'll forget to move the clothes from the washer to the dryer. And then I'll be laying down at night and I'm like, uh, I start beating myself up because I know first thing the next morning I'm gonna have to do is rewash those clothes because I forgot to put them in the dryer. And then it's like, I can't sleep. So I'll get out of bed, I'll turn on the washer, and I'll wait until the washer's done. So, you know, that's another hour or whatever, and then I'll put them in the dryer. And then I wait until the dryer's done and put them waste. So now it's like two and a half hours. And I've recently come to the realization of why are you losing two and a half hours of sleep for laundry? You know, like because you feel guilty? That doesn't make any sense. Um, like my my role as a housekeeper in my house, you know, my family doesn't need to override the fact that Kayla needs sleep. You know, that's something for me. I need that. I can't pour into my children in my husband in my house if I don't have sleep. So I think it's so important what you said is learning to distinguish what you are doing and still have your identity.

SPEAKER_01 21:37

Yeah, I think it's it's so important that us moms, I mean, I think mom guilt right comes with the territory as soon as you have a baby. I um I think we've all been there. But I think that it is so important that we do make sure that we are doing things that are important to us, whether that's you know, hobbies, whether work, whatever it is that allow us to be then the mum or the caregiver or the wife or anything else that we want to do, what that we want to be. We can't, we can't just keep going and going and going because fundamentally we break. And I think a lot of us have probably got to that point where we've burnt out or we've broken. And it then takes some repair. And I I think, you know, you also hear the analogy right of of the boiling pot of water is that, you know, you need to keep chucking in the cold water. Otherwise it will just boil over. And I think it is is so important that we do keep doing that. And it's finding is working out, finding out what is your cold water, what is the things that are going to be the things that are going to help you in those situations so that you're going to feel calm. And that might be small things or it might be big things. It might even just be having a cup of coffee and looking out the window for 10 minutes. And that just allows you to reset and you know start again. Or maybe it's going for a walk or going for a run or anything like that. But I just think it's really important as mums we work out what those things are and that we can then make sure that we are throwing that cold water in and making sure that that pot is not boiling over.

SPEAKER_00 23:11

Yeah, absolutely agree with you. And I think in you will set a wonderful example for your children because you are living with a disability and you're still teaching your children not just the normal okay it's okay to be a parent and still have your own identity but you're teaching them that I may be struggling with this disability, but I am still a person. I still have an identity I still have things I enjoy. There's still things that I can do. And I think that's so inspiring not even to just your kids but you know other people that are coming or that have disabilities or maybe were just diagnosed and they can look to you as an example of wow she can do this. Like this is her and that's amazing I can just great job because you're set an amazing example.

SPEAKER_01 24:04

Thank you. I I mean you know what I think when Henry was diagnosed I felt even more responsibility than I had done in the past because he kids look at what they see rather than what they hear. And I can tell him again and again and again that he needs to stay fit he needs to stay active he can do all this stuff he needs to challenge himself but he's going to learn that by seeing me do it. So I need to be upfront leading and you know chucking myself into for me I chuck myself into water I'm a long distance swimmer. I am actually flying to Greece tomorrow and taking part in an ultra swim. And I swim just on my arms I can't move my legs in the water but it's just really important for me that he sees that I am out there pushing myself, challenging myself and also for all the kids with disabilities that are coming on behind as well. I don't feel like I'd say to them as I said to get into sport or to get involved if I'm not doing it as well. So in some ways I think my disability on that front is a blessing because it's given me this level of responsibility of you've just got to get yourself out there and you've just got to show them rather than tell them what they need to do.

SPEAKER_00 25:22

Absolutely and so as you know our show is called Mom's brain is a coffee stain. So we have to talk about the messy side of motherhood. Yeah. How important has humor been for your family and can you maybe share one of those moments where everything went completely sideways and you guys just had to move past it by like maybe laughing through it or creating a joke around it?

SPEAKER_01 25:47

You know what there were so many situations with Tobes where we said even at the moment of like if we don't laugh about this then we're gonna we're gonna cry and um I remember one particular in that so Toby had to move into wearing pads he wasn't able to go to the toilet because he lost pretty much all his abilities and we went in one night and he had pood in his uh in his pads and it was everywhere. He'd sat in his bean bag he'd smeared it all over his carpet and we were about to change his floor anyway to a half floor because this had happened one or two more times than we could stand. And my husband just looked at he went I can't even clean this like and he just got a pair of scissors and just cut the carpet out and stuck it in the skip. And it we just you know you just at that moment you're just like my God this is so ridiculous. And we then got him in the bath and we emptied the bean bag out of all its beans because for some reason this manufacturer decided that they weren't going to put it into a bag inside you had to take all the beans out. I had all the beans out I had Toby in the bath and as my husband got Toby out the bath he ran wet towards this this basket of like you know dry static beans and we're like literally kind of shouting like catch him and these beans even then I was I actually had to get a vacuum cleaner and vacuum the dog they were just everywhere and it was just it was so it took us so long to clear up and is you know it's one of those moments where you get back to ground zero and it's like I just lost two hours of my life and really I'm back to where I started like I've achieved nothing in in the scheme of things. And we we just kept saying through it was like we have to laugh about this because some of these moments are so ridiculous that if we don't see the funny side then we're just gonna cry and even we're just gonna fall under the weight of his diagnosis and and what it's meant because it he he deteriorated so fast he you know lost his speech he lost his his swallow his ability to eat drink and it is so heavy and so I think in those moments and there were so many that we just had to go okay we just got to laugh um you know I had he was tube fed and I I had myself I got myself trained to put the tubes in and I was in the middle of a high street he whipped his tube out and if you if you did it if you just saw him do it you could put it straight back in and I had this there was this guy selling this magazine and he just watched on in absolute horror as I just quickly grabbed the tube and you know put it back in it was all done properly but again you just got to go oh my God this is just so ridiculous this situation that we have now found ourselves in like you know a year ago if you told me that I would be putting tubes into my child I would have literally said absolutely no way and here I'm doing it in the middle of a high street while people are watching and laughing about it. And I think humor a lot of the time is literally the only way the only way through it because if you don't laugh fundamentally I think you're just going to end up crying.

SPEAKER_00 28:58

Yeah I I agree you you gotta laugh so you don't break that makes perfect sense. So what is something that people misunderstand about mothers who are going through a diagnosis themselves or with their children and what do you wish like friends family members and healthcare professionals understood better about that process I think for friends and family if you have somebody that's going through a diagnosis is to just show up and be there.

SPEAKER_01 29:33

The people that meant the most were the people that were not doing the hero jobs. But you know my mum went and made a whole load of food and stuck it in my freezer because Toby got to the point where I literally had to sit by his side I couldn't leave him. I couldn't even just make my kids dinner and I didn't want to be just filling them full of crap all the time. That just meant so much or somebody just coming in and saying you know coming and sitting with him for an hour those are the people that that really made a difference and we we actually said at his funeral the people that are going to be involved in the service are going to be the people that were there the people that were clearing up the sick the poo the you know whatever happened and were in the in the dolms with us really and you know one of his uh carers at school was was one of the people that carried his coffin in and that was really important for me because he had been so powerful in doing the really messy stuff and also creating the memories for him as well. And I think it's just people just showing up and going, yeah, I know it's hard but just think how hard it is for them or just giving them space just to you know allow them to go off and have a bath for an hour, you know, an hour half an hour just to just create that time where they can just breathe and can just process the enormity of what's going on because often with these diagnoses you kind of you're sat in a room just as you'd normally gone to a doctor and it's like given this monumental life changing moment and then it's like okay off you go go and deal with it and you're like how? How what do I do next? Like I literally don't know what to do. And it if you have those people in that network and it is again back to that network is of people around you is it makes such a difference.

SPEAKER_00 31:26

It really does and I've also I've often heard that um when going through a diagnosis that it can almost be like you're going through the stages of grief when you're working through going through a diagnosis. Is that something that you experienced where it was like complete like shock and denial and then you know moving through to finally acceptance and this is what we have to do. Is that something that is actually like a feasible way to look at it for if we're friends and family to understand like this is this is a process?

SPEAKER_01 32:01

Absolutely I think you know you're told that your child has a terminal illness it is utter disbelief utter shock that this could possibly be happening and moments of just you know not being able to sleep and just sort of almost thinking is this a a nightmare that I'm going to wake up from and it's a nightmare that you never do do wake up from and I think you know you go through that disbelief you go through the anger who can I blame why you know was he not tested for this in advance we could have treated him that you know there's an amount of that and I think then you can move through to the the acceptance and I think I I learned through the journey with Toby and it and it really helped me with my legs as well is that actually I never am going to be okay with the fact that my son got a terminal brain disease and died. I of course I'm never going to be okay with that and actually by knowing that I never had to be okay with it meant I could sort of separate it off and somehow box it. And by doing so it allowed me to manage the feelings around it but also live the life to the full while we still had him and I guess that's part of the grief process and I and I I see my legs as a grief as well. And I was able to then do the same thing. It's taken me so many years to get to this point with my legs but I was like people used to say to me just accept them and then you can like deal with it. And I'm I don't want to accept them because I don't like them. I never asked for this I I don't feel like I have the skills to deal with it. I just want to be normal but actually again I learned that if I don't have to be okay with it but I can then box that feeling about it that I can actually go on and do all these other things of you know trying to mentor or to to try and inspire kids with disabilities about what we can do that I can go off and do my um swims and things like that that it's just allowed that separation and I think that's been really really important in terms of how we've been able to deal with the situation that that we've been you know we've had but I think yeah it is definitely a grief and it in some ways some people I we had a lot of cards after Toby died that said I know this was expected. It was a really common phrase and and you're you're right at some point it was expected. We didn't expect it then it for us it was quite an unexpected event but in some ways it's like a double grief because you go through the grief of knowing that they're going to die being told that eventually they're gonna die and then that they that they do die.

SPEAKER_00 34:32

And I think you know there's never an easy way but it's definitely even though we knew that he was we were going to lose him it definitely didn't make it any easier when we actually did yeah absolutely and that makes total sense because I mean it's like you said he's your son so there's some part of you that's you know hoping for a miracle or maybe there's a cure that'll come out in his time frame you know and and I think that's understandable even while you're going through the process of like you said boxing it up so that way you can still live and he can you can make those memories and do those things to enjoy your time with them. I think that's a wonderful a wonderful way to look at that um but you use the phrase living alongside loss what does that mean to you and how have you learned to make room for the grief and uncertainty without allowing them to take away the joy that was still happening around you I think whenever you're in a journey where you're in a diagnosis or you have lost someone close to you, you're you're always going to be living with that loss.

SPEAKER_01 35:41

There's never going to be a day that I don't miss Toby or I don't think about him. But I also I found that the book and also setting up the charity allowed me a way to take him with me in a positive way. And that's been really really important as we have processed this this journey it's you know he's he's always going to be with me and I can spread his message and in some ways I think he he's now more with me because I've done this and that's been really powerful. So I think yeah it it's it is a difficult journey to navigate this whole living living with loss and I think I you know I'm proud of what we've done I really am I'm proud of all of us the whole family and I said one thing actually after we left the the hospice when after he died and I said look guys to my to my kids and to my husband I was like you know we're gonna have to have a whole heap of patience for each other because we're gonna feel grief at different times we're gonna feel anger at different times and we're just gonna have to swallow a lot of it when people react or things like that. And I think that's actually been a really valuable lesson as as we have moved through this journey. We're now sort of just over two years since he died and we're still we're sort of learning to live with it and we still miss him like crazy. But I'm also really proud of that he's still with us. We talk about him all the time and we talk about him in in such a positive way things he did and that's been really important with the kids that it's in order to boost subjects talk about Tobes in fact it's almost weird when we're not talking about him because he's always part of the conversation and it's allowed them to know that it's okay and I think it's really important for us as parents to show them how we can still have him part of our lives but also how to to grieve him without it taking over and that we can still still live our lives because we we have the privilege of life and that's in one way I I look at it that you know he doesn't have the privilege of life anymore. And I listened to a mum that had lost her daughter to cancer when she was three and she said you know people say that the there's nothing worse than losing a child and you know they're absolutely right but it would be worse if you know you didn't live your life after you'd lost that child. And I totally agree and I think it's we have this privilege of life and I am also so incredibly grateful for the nine and a half years that I had with Tobes. I would not trade them for anything even to not feel this pain because he was incredible and he has you know he was such a big part of my life he's taught me so much and it has been you know a privilege to be his mom.

SPEAKER_00 38:31

I think that's amazing and you're really inspiring because it's not it's not that just you and your husband lost your son. It's like you said your whole family lost Toby. And I think it's wonderful that you were able to recognize that okay we're gonna all grieve this a little differently and and that's to be expected but also that you opened that space like you said to not create a taboo subject around Toby. And that way your kids are okay with talking about him and keeps his memory alive and and that helps them grieve, you know and and if they are having a particularly hard day now they know okay I can talk to mom about this. And that is just incredible because I've always you know I'm I like I'm a true crime buff and I always listen to these stories and I wonder oh my goodness how can these parents go on when they have two or three other kids and how do they move on with life you know and I just I'm like I don't I don't know that I could do that. And it's like like you said though it would be a dis it almost like a dishonor to your child that you lost if you didn't live the life that you have the privilege of living. So I think that that's a very unique way of looking at it. I've never heard it heard it like that.

SPEAKER_01 39:55

So for each other thank you for us actually it was a decision we made I think virtually the day that he was diagnosed or the day after and my husband and I looked at each other and said you know we know we're gonna lose him and there's absolutely nothing we can do about it. But for our other two children we want them to look back and say something really bad happens in our family but it pulled us closer. It didn't pull us apart and there's nothing I can do to help Toby there's nothing I can do to change what happened but I can change what happens for my other two children and I I would hate for them to look back and say look we were never enough because it was only Toby that was enough for my parents because life stopped when he died and Toby I say to them all the time like we love you equally even though we don't have Toby and you know in some ways he's an angel now he wasn't an angel he was naughty all the time um uh lots of times but you know Henry and Molly they need to feel like they they are enough for us and that they are still so important and how to how to move forward with this and they do look back as like something that was really tragic happened. They were only 10 and 6 when he was diagnosed so it was a huge huge thing that happened but they know that they can that they can move forward they know that we will always be a family of five but together at the moment you know on this world we're a family of of four it's different um it's very very different but they're doing amazingly and I'm so so incredibly proud of them they have matured and are so aware in a way that is has really I think impressed me is the wrong way. I was so scared when he was diagnosed that this was going to wreck their childhood and the experiences they have it's actually going to make them the people that they are like we we lived in a hospice for five weeks with Toby um before he died and they spent so much time with all the kids that were in for respite and you know my kids can connect with anybody whether they can speak they can not speak they will find a way to connect with these these kids and they understand how you know lucky they are to have the things that they have and I'm so I'm so incredibly proud. And I know you know I that sounds probably effusive but I I think it was because the fear felt so big of oh my god this is going to ruin their lives and it hasn't ruined their lives and it and I'm determined that it that it won't um they're amazing and and they know that and they are also just as much as Toby was the inspiration for this book they are as well that's amazing.

SPEAKER_00 42:51

And speaking of the book your memoir is called Never the Plan and I think so many parents can relate to life looking completely different from what they imagined um how have you learned to build a meaningful fulfilling life when the original plan had to be rewritten and what and what's the total premise of this book?

SPEAKER_01 43:15

So I think Never the Plan has been you know a number of things that have gone on in my life you know the the big one was Toby and that was the center of understanding how to manage the other things that have gone not to plan and I think so much of us you know when we go into kids how many of us said you know my child is never going to have a tantrum my child I'm never going to bribe my child you know I did this and I go into like such a wally now I was like so naive and of course I've bribed with the best of them and you know I think we kind of we go into this hoping that they're gonna have a perfect life. We hope as well that we can keep them in this almost sterile bubble that they'll never have things that are going to make them sad. And the reality is life doesn't look like that and lots of things some things are micro things that that don't go to plan and some things are really really huge things that don't go to plan and I think it's just about working out from that is how do we navigate each one where do we see the the positives in them because in every situation there's a positive even in in in losing Toby I am absolutely the mum that I am because of what happened to Toby. There's no question about it. And that allows us also have gratitude for some of these situations. But it has taken I think my legs you know it's taken me a long time to work out how to deal with it because you know I I didn't want them particularly as a kid I don't want to be different. I didn't want to walk differently or have people stare at me. But you know my life not going to the plan is what created me. And so now when things don't go to plan I can look at them okay and say okay what what is this moment trying to teach me? What what am I going to get from this? And also as I said before allowing the sucky bits to be there too. You don't take them away it just um allows you to create and build something from it.

SPEAKER_00 45:12

Absolutely I once had a therapist tell me that even on the darkest day where the clouds are completely you know black and looks like a storm's on the horizon and you can't see the sun, that doesn't mean the sun's not there. You just have to look for it. And and it's one of those things where it's a weird analogy but it's so true because we know the sun's still behind those dark clouds. So you have to look for the good even when it's like you said it's sucky. Like there's this there seems like there's a mountain of suck, but if you can get through it, you know, there's good things that you can look back on. And it's like you said lessons that have been learned or you know you're you're for example you just said your kids can talk to or connect with anybody. That's amazing. You know, whether they're verbal or nonverbal your kids have this like ability to connect with them and they would maybe wouldn't have if they wouldn't have spent so much time in that hospice. And so yeah it probably was not fun being at hospice especially for you guys you know you you're losing your son they're losing their brother um but now you can look back and you can say wow our kids are amazing. They know how to connect with you know verbal nonverbal they are they're amazing and I think it takes time to sometimes look at the silver lining and sometimes you can be in the situation and find the silver lining and that's how you get through and that's fine too. But I know personally from just the trauma I've gone through sometimes I have to look back and I have to say oh my goodness if this wouldn't have happened I wouldn't have been here and I wouldn't have my son or I wouldn't have my daughter you know and I would have never in a million years chosen that path for myself but there's a reason I that path was walked. So I think that you are so right and I cannot wait to read Never the Plan. But as we come to the end of today's interview I do have one final question for you. So for the mom listening right now who is exhausted overwhelmed and questioning whether or not she's doing enough and maybe she's even feeling guilty for wanting something for herself what would you say to her?

SPEAKER_01 47:40

I would say that you are absolutely always enough and that was the biggest lesson that I needed to learn that I'd always been enough but what I hadn't done is I hadn't given myself enough I hadn't given the things that I needed to thrive and when I started doing that when I put the network in around me that's when life started to change and that's when I actually realized that I could create a life that I could thrive in. I had the keys I just I just needed to go for it.

SPEAKER_00 48:15

That's amazing well thank you so much for joining us today. Like I said I can't wait to read your book I think you are such an inspiration and good luck with your swim tomorrow. Thank you slightly terrified I have to admit is it your first time doing it no I've done a marathon before but this is 33 kilometers so it's a long way oh my yeah that's that's a lot yeah it's one of those moments it seemed like a good idea at the time well at least the water swarm right yes exactly exactly thank you so much for having me on today I really appreciate it I've really enjoyed our conversation my pleasure well that's it for today you beautiful caffeinated disasters if any of this resonated with you hit that follow button and if you would please leave us a review. It really helps other tired moms and dads find the show. And if you want to become a supporter of the show or just keep us caffeinated so we can keep bringing the chaos every Tuesday head over to our Buzzprout page at mom's brain is a coffee stain dot com. Even a couple bucks means the world and helps us keep the coffee and the show flowing. Now you can become a subscriber of the show and get access to new episodes two days early. And don't forget check us out on social media. You can find us everywhere at mom's brain is a coffee stain. Slide into our DMs or email us with your best no guilt hacks, cringiest mom or dad moments and episode requests at momsbrain is a coffee stain at outlook.com and guys head over to check out Flow's website at uh flowbryant.com and please take a look at her charity organization it's the Makeway Foundation it's a charity in Toby's honor that is to support disabled children to reach their full potential. This is through the funding of wheelchairs, sports chairs and through mentoring also guys you can grab the copy of her book Never the Plan. It's available on Amazon now. We will put the US and the UK book links and the links to Flower's website and charity all in the show notes. Well if you'll excuse me I'm off to take my parrot for a little walk y'all mean it go sip one for us and we'll see you next Tuesday