How Having a Child with a Disability Transforms You with Jamie Bruen
Feb 28, 2023
Speaker 1 (00:00:06):
Welcome to The Odyssey: Parenting. Caregiving. Disability. I'm Erin Croyle, the creator and host. The Odyssey Podcast explores the unique journey we're sent on when a loved one has a disability. I started down that path 12 years ago when my first child was born with Down Syndrome. Arlo was the first person I met with what is the most common chromosomal condition in the United States. I was ready to be a parent, but I wasn't ready for this. No parenting book. No wisdom from the elders in my life had any insight on what it would be like to have a child who needed support for the rest of our lives. My search for answers and support brought me here, working with the Center for Family Involvement at VCU'S Partnership for People with Disabilities. We provide families with emotional and informational support that is so desperately needed. Our podcast digs deep into the joys and hardships we face. We're gonna celebrate how amazing this odyssey of parenting, caregiving, and disability is, but we're not gonna shy away from the tough stuff either. And today we're doing all of it with our guest who happens to be a family navigator with the Center for Family Involvement. And someone I'm lucky enough to call my friend Jamie Bruen.
(00:01:22):
Jamie, rather than formally introduce you, I want you to tell us who you are. Your life story is so compelling, and I've always been in awe of you. And like many of us, you're almost two completely different people. The one you were before your child and the one you became because of your son. Liam, why don't you start us off with who you were and what you did before you became a mother.
Speaker 2 (00:01:46):
Sure. Um, I honestly think my whole life I've kind of been trying to figure out who I am or where I kind of fit into the world. It took me nine years to get my undergrad, and in between that time I joined the Army Reserve. I did one deployment, went to Iraq when we, um, invaded the country. Um, but after that, I decided after my six years, um, and being overseas, that wasn't, not that it wasn't for me, but that I eventually would love to have a family. And it's hard on any parent, but especially a mother. Um, not that I had any near future plans of being a parent, um, single no way. But, you know, just thinking down the line and, you know, war's, war's, not fun. So I stopped and finished up and I, I eventually, I had my, um, undergraduate in health and physical education teacher and I decided to go get my master's in adapted physical education.
(00:02:40):
Um, the program was amazing, fully paid for, and a stipend. I wasn't sure if this is what I was going to actually be doing, but I figured, hey, if you can teach a child with different disabilities, everybody's on different skill levels cuz you could even have a child that does not have a disability whose skill levels are so poor that whatever you learn from working with people with disabilities that are stereotyped to having these horrible skills, it's gonna help because a good teacher should be able to target any child at their skill level, healthy, non-disabled. So it couldn't hurt and I wanted to go to UVA my whole life. So it was like a dream come true. So I did go get my master's in what a wonderful experience. The program was great. I loved working with the kids. Um, it was just amazing. But after I left, after I graduated, I should say I'd always wanted to live in Boston.
(00:03:37):
So I figured, hey, let's go up and teach in the city because I don't know what I'm gonna be teaching adapted pe but I'm guessing stereotyping that city schools are not fully funded. Kids are probably lacking in certain skills, so let's go for it. And I wanna live in Boston. So I did. I went up and taught elementary and middle school, pe um, and yes, skill levels all over the place. Equipment underfunding a lot of the stereotypes about the inner city schools, but also some of the most amazing kids. It was, you know, I can't say it was a great experience, but it was an experience and still have communication with some of the kids and parents from 14 years ago. And it's been fun to see a lot of them succeed. Um, but while my last year of teaching, I became pregnant, um, single mom and I was like, okay, I'm gonna do this.
(00:04:34):
I have a very supportive family. My first pregnancy, I was working full-time plus extra hours coaching and it was an extended school. So all the tests, everything came back fine. Looking back at it afterwards, I was like, oh, you know, there was no movement but I felt with a water moving around. So I was like, oh, that must be it. But I never had any of those kicks or anything like that. Um, and actually at one time I think they did a test in his marker came up that he could be positive for. He had a risk, he was at higher risk for down syndrome. And I was like, so you know, that's my kid. That's gonna be my kid. We're going forward no matter what because I'm connected to this child and he's gonna be loved. Little did I know that was not it.
(00:05:18):
Um, so his birth, I don't, I don't, this this population that I'm talking to you guys right now, listeners, you'll, you'll understand this. I don't really talk about this much with other people cuz it is a very, very hard topic. Um, his birth was very traumatic. Um, you know, my water broke a month early. Um, my brother-in-law and sister came over, rushed me to the hospital, took a while. His heart rate was going up and down. They tried to induce me. Um, he didn't come out. So we went in for the emergency C-section. Um, and when that came, when that came, I remember sitting there and just at that point before he's come out, the reality of everything hit me. And I was talking to the anesthesiologist saying, please let everything be okay. My sister's there with me and I'm holding her hand and I'm saying, please let everything be okay. They get Liam out. I hear what a beautiful head of hair. And then silence and he's just rushed out of the room. Um, it was Memorial Day weekend, so there wasn't much staff there. It was horrible, horrible, horrible, horrible. Um, I was, since the C-section, they brought him up to the nicu, you know, they had him intubated, they brought him to the NICU and I had the C-section and I couldn't, um, do anything. And I'm still drugged up. And the questions coming in were, what drugs have you taken? What have you done? And I'm sitting there like nothing. What's going on with my son?
(00:06:53):
What's going on with my son? Um, I didn't get to see him for a while. I forget exactly how long cuz everything was such a blur. Such a blur when I got up there. Most beautiful little boy ever. His head full of dark hair. Oh so much hair and not moving one bit. All these wires and tubes through him. And I just see this little kid sleeping peacefully and a Red Sox fan. Big Red Sox fan. And I remember sitting in there over his little, I forget what they're called, his little egg shell thing, whatever it is, plastic thing banging on it. Same please Liam, we'll take you to a Yankees game. Please, Liam, just move. Be okay. All you can, you can, you can, you can like any sports team you like, just be okay. Just be okay. I'm okay. So then we just had to wait. Um, the nursing staff were there was amazing. I think it took 48 hours for me able to be able to hold him where a nurse who had been like, I have a child with a disability. Have you held your son? And I'm sitting there saying no. She put him on my chest and I just held him and hugged him.
(00:08:17):
Uh, um, and it was most beautiful thing ever. And so there began our journey, um, not knowing what was going on.
(00:08:32):
No one could have known. There's no test for what he has. He was actually misdiagnosed. They did some a biopsy. They said he had a lot of glycogen storage, a glycogen buildup in his muscles. And um, they misdiagnosed him with glycogen storage Type four. I think there's no treatment. Um, there's no treatment for anything he was diagnosed with really. So not it would've mattered. But what I did was I, um, saw all his symptoms, how he presented what you needed to support with everything. I got online and I found congenital myopathies. Um, and the one that he seen the most, like was called mild tubular myopathy. N t ntm affects mostly boys. It can't be X-linked. So I reached out to them and they put me in touch with other people. Um, because now I had to go through the process where my son can't breathe, he can't move and he can't feed.
(00:09:31):
What am I gonna do? Am I gonna bring 'em home? Or was uh, they put it, was I gonna let him expire? Um, is just a horrible way of saying it. Horrible. Who the hell says that? That's awful. Mind you, this is not the nurses. Nurses are amazing. Um, so I mean in truth is, and saying Am I gonna let him. Are you? Because it would be nature taking its course. It's not letting you know, it's not, I hate that because this is the worst. This is an extraordinary situation with pressures on parents. Um, and just the way to say, to say it just puts different pressures on people and people have no clue. Um, but the m t m people got in touch with me. Um, and I started talking to people online, to people that had let their sons peacefully leave this earth.
(00:10:30):
And uh, one person in particular who had let one son leave instead of it was the worst thing she's ever done. Um, and then her next son she had who had the same condition and it's a hard life. It's a very hard life, but it was a harder life watching her son leave. It was the worst thing she ever did. And other people who had with their sons and felt that that was the correct thing for their children. Um, I even had one mom, her name is Erin. She's the most amazing woman in the world whose son was 12, I think about the same age as mine, who was at Boston Children's Hospital. He's so, like, he was so like Liam, come and visit me while I was in the NICU. And I remember I was so tired. I was like, I can't handle this.
(00:11:15):
I didn't answer her calls and she came with her son anyways. I wouldn't recommend that to most people for, unless you live our lives. Don't, don't go be busting on people's doors or doing anything <laugh>, especially at that time. But I'm forever grateful. she will who passed away a year ago in February from his, my tubular, my apathy came and visit me in the hospital where she talked to me. I got to talk to him and see what life would be like real hand. Um, and the impact that has made on me was amazing. But I also did, um, have all the tests done to see what Liam's, well not tests, but just whatever they could do to see is Liam in any pain? Um, is Liam in any pain? Is he suffering? Cause he is. And he was. And he still is my number one.
(00:12:10):
Everything is for him. Um, and there was nothing, there was one time where I came in and his stomach was distended and they weren't sure if he was gonna tolerate his needs. Um, so they decided to give him a G tube, or do the do feeding through the g tube. And he was fine. And I, I don't know, it could have just been a bad day cuz he has been fed through his G-tube by mistake from nurses and he is been fine. But that time I was like, I don't know if my kid's gonna even be able to have nourishment. Um, but he was fine. Um, so after that we, he was in no pain. He was just the most peaceful sweet little guy. Um, and I talked to my family, being a single mom and uh, just the support. I was so blessed. My dad was like, we can do this.
(00:12:58):
We can do this. Not, not pressuring me, but we can do this. What do you want to do? And there I am thinking, okay, cause they're giving me all these timelines. What life's gonna be like. The doctors are telling me, I'm like, okay, it's gonna be a couple years. I can do this. Couple years. They're gonna tell me he's gonna die. And what they told me he had, no one had lived past seven months at that point, or very rare. There was only a couple people that had lived past seven months. And I'm like, you know what, if I've got seven months, I'm gonna make this the best. Um, oh boy that came into that seven month who was just like around there. It was just wow. Terrifying. Um, so I decided since as my mother's instinct, Liam was peaceful, happy.
(00:13:44):
I was gonna give him a chance of life and whatever. People who don't live our life say quality of life here. I had this mom whose son came in to see me talking to me about the beauty and these moms, they never soft coated it. I would, they would've never told me this was gonna be easy, never once to try to influence me. I was so grateful for that. I mean, I went into this knowing it was gonna be hard, not fully understanding cause I hadn't lived how hard it's gonna be. But I also had this amazing support from my family, online people. Um, I said, okay, I'm gonna do this little did I know what I was getting myself into. Holy smokes, what the okay, <laugh>. Um, no regrets, trust me. No regrets. Um, so he was at the Boston for two months and we were actually able to have insurance pay for our flight down cuz my family lived in DC area, Virginia. And where he transferred Children's Hospital. And then we went to a hospital, they changed the name now, but it was called Hospital for Sick Children. Last time I looked, they, no, last time I looked they changed it to HSC, formerly known as Hospital for Sick Children.
(00:15:03):
I felt, I'm like, oh yeah, that makes it a lot better. And cuz he came early. I hadn't been, I'd been teaching, obviously I had my time off. I was able to go see him every day. Every day. And I had two… one sister and another friend who lived up there, who were there, who came with me when I was in Boston. Mm-hmm. <affirmative> every day to the hospital pretty much every day. My mom drove up every day we were going in there, which was also crazy cause I was holding him. And I ended up having a blood clot a week later after he was born and having to call an ambulance cause I'm on the floor rubbing it, which is the worst thing in the world. Um, in my leg. A DVT, um Right. I'm jumping around cause I already got to DC but now I'm back to Virginia.
(00:15:41):
I'm, I mean, as I already got to Virginia now I'm back to DC <laugh>. Um, so that was also in there too with the emotional postpartum, everything. But we did get to HSC where he was there between Children's and HSC for another two months. He came home at four months. We had to, we had to have a nurse come home with us. She worked one night I think and said good luck and left <laugh>. Oh wow. I know. Oh. So, uh, talking about nursing, as many of you all know in this home healthcare, the stories, whew. I, unfortunately, I have a very good network of three nurses. I could use a little more help. Two night nurses right now, and the one's been with us since that October. He came home in September and she started working that October. And she's been with us ever since.
Speaker 1 (00:16:26):
Are you serious?
Speaker 2 (00:16:27):
I am, but I also knew. Because she, she came in with a notebook, taking notes, walking around it, just her attention to detail. And I was like, Hmm. Then she … she talked to me later. She was like, I don't think I'm gonna be able to work because I need to be able to get home at this time to get my kids on the bus. But I said, okay, that's an hour earlier. We will be down. We will be down. You can leave earlier. Can you please work? And guess what, she's still here. Which, oh, sorry. Did you have a
Speaker 1 (00:16:57):
Well, no, I was gonna say, let's stop for a second because Liam is how old now?
Speaker 2 (00:17:01):
He's 13 now. He's 13 and a half. He'll be 14. She's been with us for over 13 years. And that is almost unheard of.
Speaker 1 (00:17:09):
Oh. Uh, that as anyone with any, most of our listeners would have knowledge, I would think, given the topic. Right,
Speaker 2 (00:17:17):
Right.
Speaker 1 (00:17:18):
That is unheard of. That is a dream come true. I bet she must be like part of the family at this point.
Speaker 2 (00:17:24):
She is all my nurses. Well I, like I said, I only have three, are part of the family, you know. But it has taken… I am blessed that my parents are able, they open their home to me, their finances, to Liam and myself. So I'm also, I, I know how fortunate I am where I've been able to adjust to adapt to her schedule where she'd have to leave a lot of times in the summer to go to Puerto Rico to visit her family. So I had that extra benefit of being like, okay, I need you here. She was working nights. She now brings Liam to school. I don't know if I could ever find another nurse that I trust like her. So there's been a lot like of give and take on both of our ends. That I'm in a situation that I know a lot of people aren't in. That situation to be able to adapt your own schedule when you have a good nurse. If I hadn't been able to adapt continuously, she wouldn't have been able to stay and then, and go through all this craziness with people.
Speaker 1 (00:18:14):
I think that that in and of itself, Jamie, is something that we should have a whole separate podcast about. Because I think perhaps, uh, think about like, like how to work with someone who's amazing to keep them for as long as possible. That in and of itself is just, we can dive in. I wanna go back and I wanna first off, thank you because you were crying. I was crying and anyone listening, I, I can't imagine they have dry eyes because anyone who has been through something similar can very much relate to what you've been through. I mean, I know what it's like to not be able to hold your kid in the NICU.
Speaker 2 (00:18:55):
Right, right. And I, I don't, I don't talk about it with people. And this is the first time I've gone over it in probably years. You know, every now and then I'll talk about it with other moms one-on-one that might be in a situation. And I might not go into all that detail, but they talk about PTSD. I mean the first six months, if anybody was having a baby about to have a baby where I'd be crawled up in a ball on the floor, on the floor crying and still sometimes it just, it hits you. Yeah. It hits you so hard. And it's like you can't, you can't control it. That the continual trauma also that is involved but that birth trauma. And I can't imagine the parents that go through this and then have to leave permanently without their child. I mean, how that like, my heart, my heart to these parents that's suffering. I mean, we don't talk about it enough in this society. I've … the quote, the parent, the quote that there's always a husband that loses his wife is a widow or a wife that loses her husband is a widow. A child that loses their parent is an orphan. But what is a parent that loses their child? We don't talk about that. And then having a traumatic birth and then someone leaving without their child. Oh my heart.
Speaker 1 (00:20:16):
It's, it's unnatural. I mean, I think about losing a kid at this point. You know, at any point, you know, my children are 12 and 10 and almost eight. And as I tell them, they, you know how kids ask strange questions and like, what would you do? I'm like, I don't know. I would have to live for the rest of them, but I would be dead inside.
Speaker 2 (00:20:39):
And that, that's honestly one is my, my biggest, I try, I, and I'll talk here about it. I try not to, I might say that to people, but I have to because my son, I have to outlive my son.
(00:20:50):
Yeah. And when I, and I can say that, but when I actually stop to think about it, seeing other friends that are outliving their children, or especially if they don't have any other children and seeing how they can function, the other children might help you cuz you have to for them to survive for them. But at some point, like, I need to outlive my son. He cannot go into an institution, he cannot be hospitalized. It would destroy him. It would kill him. Um, so that, yeah, that's a hard reality. Like a smack in the face. It's just, i I don't have words for that because it's just a reminder right now, living in the moment. I mean, we have everything prepared. We have his graveyard, I have my graveyard prepared. My parents help out with this again too I’m so blessed. You know, I have my son's graveyard, his plot ,mine. And that when you stop and think about that, it's just, it's morbid. It's horrible, horrible. This is something that has to, nothing can happen to me.
Speaker 1 (00:21:54):
That level of pressure and stress that we live under, that is something I don't think parents of non-disabled children can even begin to understand what that does. That constant, it is always in the back of our heads. Um,
Speaker 2 (00:22:12):
Always,
Speaker 1 (00:22:13):
Always,
Speaker 2 (00:22:15):
Always,
Speaker 1 (00:22:15):
Always.
Speaker 2 (00:22:16):
People that will know that they will outlive their kids. They have to have the money, they have to have, who's gonna care for them. Kids can't live on their own as they become adults. And that pressure is just, it's unreal.
Speaker 1 (00:22:29):
It is unreal. I, I once had someone say to me, and I'm sure you've heard the gambit of the most ridiculous, insensitive, ableist commentary, but someone once said to me is, you know, my son has down syndrome. And they said, oh, you know, parenting always comes with letdowns and disappointments. You just got yours at the very beginning. And I was a new parent at the time. Uh, if I could turn back time right now, like I would've said some expletives because that's really all it deserves. But instead I just sat there thinking, you know, this is someone in their seventies and I should listen to them because they're wise and it still makes me angry. I mean, what kind of things have you had to deal with?
Speaker 2 (00:23:13):
Oh boy. Well, the first thing is why would I ever make my son live like this?
Speaker 1 (00:23:20):
Oh.
Speaker 2 (00:23:21):
Why would I do this? Because he's got tubes, he's got wires. He relies on everybody else for everything. Why would I do this? And I, and when people say that now then I, I used to get defensive. Um, now when people say it, I just, I feel so sorry for them. Mm. Because my son has known more love in his 13 years. Probably more love in his first year than most people will ever know. He can communicate with his eyes, with sounds and through a communication device. Yeah. He has his moments. He's a 13 year old boy, but he is pretty much the happiest person I have ever met. And it just blows my mind cuz he doesn't give me time when I'm with him to feel sorry for myself. Like, I hate that if he has a hard time, like there have been times over the years where I've almost lost him and he'll bounce back and two minutes later he's ready to go.
(00:24:23):
And I'm like, Liam, you need to stop being so happy right now. I need to curl up in my corner and feel sorry for myself. Mm-hmm. Um, and he does not, he does not do that. I ask him all the time, Liam, do you like your life? He's, he'll tell me. He loves it. He loves his life and he doesn't wanna be anyone else. And it just, it's that constant reminder that when people say, oh, quality of life, I'm like, how dare you look at someone's life and tell them what their quality of life is. Just because in this society where everything is, especially in the States, what do you earn? What do you do? What do you buy? How big and flashy are things? And I do believe in God. And that to me, when I when I hear that, I'm like, that's not the purpose of this life.
(00:25:17):
My purpose is not to be out there trying to go buy things. Sure I have my moments. I like it. We're human. But when I see that smile and that happiness from this kid, I mean this is what, this is what it should be about. Not that pressure. Their shoes. And like I said, again, give me some fancy baking stuff or some workout clothes. And I am like, heck yeah, take my money right now. I want it. Mm-hmm. <affirmative>, um, instant gratification with that too. But deep down, I, I mean there's more of a purpose in this life than that. And if people can't see that, no matter their beliefs, if this is where you think you're actually getting your happiness from external things, you're crazy. I shouldn't say you're crazy. It's probably not appropriate to say but <laugh>. But you know, you know what I mean?
(00:26:10):
I know what you mean. Your priorities wrong. You have your priorities wrong. People should be your priority and we can't save the world. That's one thing I've had to learn. Cause I try to save the world. I can't save the world. It could just be the saying hi to a cashier type of thing or smiley and not bickering at people. You know, he's that constant reminder to me of this. Actually when he was little in the hospital, the first week we had the talk with the doctors and I had never seen him open his eyes. So I asked the doctors, okay doc, is he gonna open his eyes? And the doctor told me he might never open his eyes. So, you know, I am distraught as can be. And I go back to the nurses and the nurses are like, they didn't read the charts.
(00:26:52):
He opened them last night. Okay. And so, you know, our, from that motto, because Liam can move his eyes, um, he can move his little fingers and he can move his eyes, his tongue. And our, our motto has been eyes wide open, kind of living life the Liam way. And yes, I am not perfect at it. There are many times I want to strangle someone, throw a book, punch a wall, um, just get so frustrated with people. And his, his purpose in life is not to open anyone else's eyes. I hate that when people say, oh, but he's done this for you or changed your life. Yes, I'm very appreciative of that. But that is not his purpose. He does do it. He does make me a better person. He makes, I think most people around him, if they are willing to let him into their lives and actually see him as a person, a better person. I mean, I wanna, I wanna go out, I wanna have fun. Sometimes still, I like to think I'm still young at 45. I mean, I do occasionally here and there, but it's, it's not, it's not my number one thing.
Speaker 1 (00:27:54):
Yeah. Isn't it funny how the things that you think are gonna be great, even even experiences we try to create with our children, whether it be going somewhere or getting them something special, you know, I find the kids just don't care as much as something as simple as listening to a favorite song or Yeah. Or like watching a favorite movie or just hanging out. Like the joy does not come from spending money. The joy comes from just being together. It's sounds cheesy and, and and whatever you wanna call it. But it's absolutely true.
Speaker 2 (00:28:34):
A hundred percent true. I mean, people are always like, what can we get him or what can we do? And I'm like, yes. He gets excited at a present, he does. But then literally five minutes after he gets his present, he could really care less about it. And if there's a present, I'm like, tell people come over and watch, actually watch a show with him for 30 minutes. Interact with him in the show cuz he likes to interact with the show. And that is the most exciting thing for him. But going back to what you said about like going out, and that's been hard on me because, and I should say it was hard on me. The pressure's okay, I want him to go out, I want him to do this much stuff. Um, I want him to experience this where I realize now as he gets older, he's very adamant he doesn't wanna do certain things, which is also very typical.
(00:29:18):
Right. And I need to respect that. And when I've started to do that, realizing I don't need to, not that I was ever keeping up with the Joneses, but even trying to do things that I thought he might like or that he can do with friends. Trying to push that where he's like, I don’t wanna do it. And, and when I've started to learn to respect that, I'd be like, it's okay. It's okay that we don't do this. It's made my life a lot more peaceful. It's okay that I don't have to meet other people's expectations. What their 13 year old might be doing in a way that Liam could do it. Obviously we're not gonna be doing things that most 13 year olds can do. Not not even close. Right. Um, but even from like his birthday or he doesn't even like to go to the movies anymore.
(00:30:02):
He used to love to go to the movies and now he's like, it's just too loud. It's not as comfortable in his chair, his wheelchair. And he'd rather be at home and watch a movie at home. And you know, that took me, I tried to make him go a couple times and he's just like, I don't want to. And he was not upset about it. He's okay with that. Where I had to be like, okay, he is okay with this. This is what he prefers. He's telling you be thankful that he is telling you this is what he wants to do and he's happy about it. He's not happy when you're making him try to do something.
Speaker 1 (00:30:30):
I wanna touch on this a little more because this is actually in the list of questions I had for you Jamie. I think it's interesting. I have a similar issue where it's not the logistics you have to deal with, right? Like wheelchair and equipment and whatnot that Liam needs. But, uh, behavioral stuff. And I think the families and the people listening can relate. Like doing simple things like going on a vacation or going to watch the sunset or going to a movie or a baseball game or a school dance. I don't know, you name it. Right? It feels like lifting a mountain, just getting my son to go to school in the morning because of behavioral stuff is like every day as this like task that brings such stress. And so I think often we feel like we need to keep pushing because we want some sort of normalcy. We want to make sure that they have friends because that's the expectation and normalcy.
Speaker 2 (00:31:30):
So that word normalcy because it seems it's normal to do these things, right? And we've seen that be my, my life is not quote unquote normal and being able to actually get over that. But see here's the thing too. A lot of people and you included have more than one kid. I only have one. So that adds the extra pressure. Cause I know siblings, a lot of times of kids that disabled kids, they have got, they make sacrifices, they make big time sacrifices where the pressure on a parent like you is different because you want your other kid to enjoy something. The pressure on me is different cuz this is what society or this is what's normal and he should be doing. And then when I say to him, okay, we're gonna do it. If we're gonna go outside, we're gonna go outside for as long as you want. And if he's only out there for 10 minutes, guess what? He's happy about it. And then we're back inside and yeah, I'm exhausted. But he's happy. He's completely happy about it. I think since I've been able to let go of that, it's been great. But you have a different burden. I, I hate burden. But you, you have a different pressure.
Speaker 1 (00:32:40):
I'm okay using the other kids. It's true. The other kids, and I always wanna distinguish the burden is never our children. Correct. The burden is that the world is not accessible. The burden is the ableism society puts on us. I, I just, I I hope that whenever we talk about that it, I wanna make that clear.
Speaker 2 (00:33:01):
And you know, a lot of times when I have people ask me what's wrong with him, I will now look at them. I was just talking about this with another friend who's people or adults were asking her, what's wrong with your kid? Um, and when adults ask that it, when kids ask it, do I say it a little differently? A lot differently, right? Because kids are kids. They're supposed to. I'll be with adults, ask it. I look at them, I said, there's nothing wrong with him. There's something wrong with the world that can't accept him. <laugh> be more like, oh okay <laugh>,
Speaker 1 (00:33:29):
It's perfect though,
Speaker 2 (00:33:30):
But I wanna make clear there. It's absolutely zero wrong with my child. And when kids ask it, I'll be like, Hey, there's nothing wrong with him. He might just need a little extra help with his breathing. Where I've had kids be like, oh, so it's like air conditioning .And as most of us probably know, kids are like so accepting and they're like, oh okay. Oh that's pretty cool. Or before it would be like, oh wow, he's got wheels or he doesn't have to go to school certain days cause he only goes part-time, you know? Mm-hmm. <affirmative> Kids, kids are lovely. Why do people have to grow up? But adults, I don't have the patience. Not the patience, but I don't have the bandwidth I should say really for questions like that now because this is my son and the person I love. What's wrong? What is wrong with society?
(00:34:12):
And I know that times have changed and a lot of us, including myself, you know, I look up when I grew up what's, when I grew up, there'd always be the MDA Marathon Jerry's kids. Mm-hmm <affirmative>. And that was such a thing to make fun of other kids for, to being a Jerry's kid. Right. Guess what? My son's a Jerry's kid. That's muscular dystrophy. I look now and I'm like, oh thank God certain things have changied or now we're understanding or that the fact that disabled people are out in society more, it's not like, oh you see someone, you're like, oh wow, you see someone, it's like oh wow, look at that person cuz they're never out and about where now it's nice to see you go to, I go to church.
When there're power wheelchairs. There are wheelchairs. Yes. I don't go out too much. But even every now and then, you know, I'll go out and say at a restaurant and you'll see more disabled people or kids And that's the way it not the, I mean yeah it is the way it should be cuz they are members of our society and there's nothing wrong with a disabled person.
Speaker 1 (00:35:17):
No. Um, and I often think that part of the reason, I'm not sure if you feel this way, part of the reason it was so hard for me when my son was diagnosed with Down syndrome is because I'm also 45 and we did not have people with disabilities in the same classrooms as us. We didn't even have them on the same buses as us. It just didn't happen. We are of the age where our peers with disabilities were left to die, were institutionalized. You know, if we have a peer with a disability who lives in society, our, that is our age. Like I, I wanna go and thank that parent for bucking the trend and being the amazing person they were to say, Uh-uh - this person's coming home with me. This child is my child. Like things have changed dramatically. And I feel like kids now, if we don't mess them up with our silly adult ableist ideas are going to be much more accepting. They already are so much more accepting. It's very, very different.
Speaker 2 (00:36:23):
Thank goodness. I mean just, I mean that was my big fear too with him going to school. And I know he's sheltered even at school cause he does have a nurse and he does have a one-to-one aide, but he'll be in the hallways and he will have kids coming in. He is in middle school too. As we all know, I taught middle school, we all know if we have kids being middle schoolers, that is the one of the toughest ages. And the kids will come up and say hi to him, make a point. And I'm sure there are kids that make fun of him, but I mean there's kids that do that about everybody. But he is sheltered from that because he does have adults with him all the time. Um, but that was one of my biggest fears going out and people staring and or just completely rejecting him and how hardened it is. Hard. It still is hard. I do also have to remember sometimes when I go out without him, if I see like a power wheelchair and it's all decked out, I'm like, Ooh, let me check it out. And I'm like, Jamie, you don't have Liam with them. They probably think you're staring. Just, you know, kind of do it incognito where I'm like, what's that equipment? What's that new thing? And then cuz you know, it gets old when people are always staring or pointing. It gets really, really old.
Speaker 1 (00:37:26):
But I think we all do that. Like don't I, I, I wonder and I would love to hear from some listeners to commenting or whatever, whenever my son is not with me or whenever I see someone using a wheelchair because like when you're part of the disability community, I feel like you're just part of it. Right? It's, I do not like, I do not discriminate my love of people <laugh> with disabilities. Like I, I just, I just have this extra connection because of my son. So whenever I see someone with Down syndrome, I do the same thing. I'm like staring. And so it's almost nice to have Arlo with me so I can be like, hey, and, and so I think you must not be alone, but I feel like we probably give off a different vibe. I hope so. They can feel that like, oh yeah, they're part of the club.
Speaker 2 (00:38:13):
<laugh>, I sure hope so because they're at times when I've literally done like a 180 at a wheelchair and I'm like, oh man. Or, but there have been times when I've been out and about if I haven't been with Liam, I actually go up and say hi and be like, I'm checking that out because of my son.
Speaker 1 (00:38:27):
Right.
Speaker 2 (00:38:27):
Um, where we are, it's like there's, where's the secret handshake? We need like the secret handshake or sign to be like, Hey, what's up? You know, we're family. We are.
Speaker 1 (00:38:35):
So Yeah.
Speaker 2 (00:38:36):
Yeah. A hundred percent.
Speaker 1 (00:38:38):
I know. And in fact, that reminds me of something you said to me ages ago because um, I actually got to know you when, uh, my husband and I are filmmakers. We did some early intervention stuff and I, I think it was, we were at the Air and Space Museum out in Chantilly and Liam was there.
Speaker 2 (00:38:59):
That was the second, that was the second time. Cause
was at the ice cream shop the first time to watch trucks.
Speaker 1 (00:39:02):
Yes. And well you said to me there like, I think that Arlo might have been using um, a walker then. I don't remember. And I said something about how hard it is, but then I corrected myself because I was like, well Jamie has it so much harder. And I don't remember exactly what you said, but it was something like, we're all in this together. Don't even do that. Do you remember?
Speaker 2 (00:39:23):
You know, I get that a lot from people just because of how Liam presents. I mean you see him and you know that he's got some extreme medical issues and I'll get people, even typical people that will tell… typical people, <laugh>, um, people with typical kids, no disabilities. Typical even that word sometimes drives me crazy. Um, yeah, that'll say that. Oh but you do this, you know, and you do that. And I'm like, that is your child. If you are not constantly bitching and complaining to me, sure, come to me please. That is your child. That is your child. That's your heart right there. And you have different hardships that I might have that I might don't have. Like in school for instance, Liam does great in school and the schools are so great with him because he is on track to take us SOLs. You know, he uses communication device, gets good grades, behavior.
(00:40:13):
I don't have to deal with that with IEPs difficulties. Mm-hmm. <affirmative>, um, where a lot of parents that kids might not give the same feedback that Liam does, don't get the attention that Liam does. So I don't have that stress in my life. And you might have that stress. It's not, this is not, yes. This is not a competition. I hate that when people try, even in this world as parents, we try to one up uh, each other on who has it harder or just not complaining because someone else might be going through that. But we need to talk about these things. And if someone whose child might have a different type of disability does not understand if you're not constantly, and we all know, we all know the people that are always constantly woes me. Mm-hmm. <affirmative>, poor me, blah blah blah, constantly. I mean, we all go through that.
(00:41:03):
We all do. And there's nothing wrong with that. We are human and we all need people to pick each other up. But if someone's child or an adult's disability is different and they don't understand that you might need to vent about something, don't feel bad telling 'em that person's not, I shouldn't say they're not worth your time, but they need a little readjustment because we all we're, yes we are in this together. This is so hard. These are our kids, this is our heart. I mean, even people that have kids that are healthy all the time and then they might end up in the hospital for something at that moment. You know what, that is your heart. That is your child. And if you didn't feel bad or you didn't feel miserable, something's wrong. And as your friend, we should be able to talk. Now if your kid's get in a sore throat and you're going to the doctor's every week and saying, oh whoa is me. I feel so sad or I, I I can't deal, I cannot deal with that. And especially in our world, when our kids are going to the doctors so much, oh and we need to talk to each other when we need to vent. It's still hard. And there's certain things that are so easy for me with Liam, I'm trying to think of what they are. <laugh>,
(00:42:09):
I mean he doesn't give me any attitude he has. Well okay, he does give me attitude. He thinks it's funny, <laugh> but he, he can't act out obviously cuz he can't move the same way other people can. He's not running off. He gives me attitude about shows or if I don't change his shows fast enough. Or sometimes he knows I'm so tired and he just likes to poke at me for little things. And he has a noise he makes that's like nails on a chalkboard. I, but that's like the worst of my behavior with him. I don't have to deal with him running off. I don't have to deal with a child who might be violent. Um, I have, I have things obviously and everybody in this community has different things that we have to deal with. And Liam's never been hospitalized, knock on wood, since he's come home. Yes. My home can be like a hospital sometimes. Yes. I don't sleep, but many of us don't. And it's not if I can't take some of your burden off of you by you talking to me. Whereas sometime you might, I may need to talk to you. I mean, or then we're not all the don't, that should not be the case. That's not, I guess I'm, I'm telling you right now, as you already know, after so many years that person's not your friend.
Speaker 1 (00:43:22):
<laugh>. <laugh>,
Speaker 2 (00:43:24):
Sorry. But yes, we are all in this together. We should be at least we should be. And I find most people are, most of us are.
Speaker 1 (00:43:32):
No, you're right. And you helped me early on and you helped me see too, like when we talk about accessibility, you know, someone like Liam needs accessibility for his wheelchair. He needs accessibility for his learning and his I gaze equipment. And then we have people like my son who accessibility means a playground with fences because he does run off. You know, accessibility means locking ourselves into the house because he'll escape. You know, it's, it's different and every family is different and yeah, some, sometimes those could be those violent behaviors like yeah that that it's a different kind of struggle that that each of us face. And I think that the stress of it though is very similar. And I think that PTSD that we have and that ongoing grief, right for like every milestone that is joyous for most families with non-disabled kids brings with it a, a pretty significant level of grief for families like ours.
Speaker 2 (00:44:40):
It's funny cuz I was just texting with a friend yesterday about a cake for one of her son's birthdays. But she was telling me how she doesn't typically celebrate her kids' birthdays. Her oldest daughter has a lot of health issues and she's got two younger ones. One's just turning one and she's like, don't, don't judge me. I might be a bad mom. I don't typically celebrate 'em but I'm trying to be better. And I just let, I just stopped and said wait, hold up birthdays, milestones. Even when we celebrate them, for most of us it's like a knife through the heart. Mm-hmm <affirmative> and our milestones are different. But at the grief that can still come because everything that is different about our lives, his life is like, comes to the surface at that time. And I told her, I think this is pretty common. This is really common in our world And don't, and I've told her it's only gotten better for me as Leo's been like more laid backer.
(00:45:32):
I don't feel like I have to keep up with other people. Or he's like, eh, like his birthday is like let's go do smores with some friends outside and and I'm like this is beautiful. This is perfect. Mm, this is perfect. So relaxed with friends that are like family. So nice. So yeah, all the milestones or the times for me … it'll be at times I'm driving home cuz the PE teacher played sports love sports and I'll randomly drive by a soccer baseball field. Mm-hmm <affirmative> and it is like I got sucker punched, it comes, I could be having a great day and then I see it just for some reason at that time was, it doesn't happen often, but it just happens. Whereas just like I lost, I can't breathe and I'm not having a panic attack, but you just get sucker punched and adjust these little reminders that we deal with. That's just how different things are. I mean, I mean no one's owed health, no one has owed anything in this world. But when it's the person that you love the most and that you would do anything for, it hits so hard. Uh, such a reminder just how different things are.
Speaker 1 (00:46:39):
It is, it is one of the biggest struggles I've had and, and it's less so now, but is watching my nephews uh, and nieces. Right. Like those, those things that my brothers are going through with their kids and my husband's brothers. Yeah. It's like, oh yeah, that's different. And then the lack of understanding from family, you know, those people that have been such a close part of your life, your whole life understand it the least. And I think that's why I lean on the friends that have made like you and and some others that we mutually know. There's people really close to you who are your family of circumstance. Right. I lean so heavily and even though we don't always have time to talk to each other, as much as I hate social media, you know, that that's often our connection because our lives are so busy we can kind of follow each other and feel connected just by looking at pictures.
Speaker 2 (00:47:35):
Oh a hundred percent. So I have a nephew who is six months younger than Liam. Mm-hmm <affirmative>. It's pretty much he's doing everything that I had dreamed. The sports just being the active and it was, his birth was really, really hard cause that was one of the first kids after… Also and being a boy and then just watching him grow up just has been hard cuz it's that reminder. And he is just a sweet kid. Just a sweet boy, sweet boy. And some reason we've always, even as a baby, like we got along. Like I would hold him and he'd sometimes get annoyed with my mom and want me where I'd be like, what is going on? You know, I'm like this is so, so hard. Um, yeah. And my brother and sister-in-law are great. They're wonderful. My family obviously certain people can't know the depths and they're our friends that I can just pour my heart out about everything cuz they walk my shoes.
(00:48:33):
But my family is so lovely. Um, and they just, they've taken me at my own pace with things. I started recently started ADHD meds where I was able to talk to my brother and tell him for the first time just how hard it can be sometimes. And I feel, I do feel bad about that because his family is so beautiful. Like the oldest brother who um, I'm gonna brag a little, is a rower and gonna go to um, university of Penn to row. Yeah. And it is just Liam's favorite person in the world and is always so sweet to Liam. Um, my niece, the niece just so sweet. They came up last Christmas and it was just the best time. But also that's the first time I have thrown a ball with my nephew at 13 years old. Mm. Cause I was gonna be the high school coach and I was gonna take my son to all these sporting events and I was gonna do all these things with him.
(00:49:29):
I was gonna get off. Right. Um, and then seeing my nephew who is 13 doing ex, not exactly, but pretty much what I planned out was sports and doing things. And my mom going down there and watching sports. Liam hates sports. He hates it. He hates it. And he won't watch 'em with me. And it drives me crazy. Drives me crazy. So this past Christmas when they came up, I threw the ball with them and you know what, it was really nice. It was, it's hard. It's really hard. But being able to tell them … my brother, how I felt before, not how I felt or just how hard it's been. And then to be like, okay Jamie, you can do this because you've let them know. And again, I am so blessed that when I told my brother, he's just like, I love you Jamie.
(00:50:22):
Um, we're here for you. I love you. Um, but I think of the times I've lost out with them and that also is, that's something I regret and where I want to now. I threw the ball and I wanna go see him play baseball. I, I, it's gonna be hard. And I told my brother that it's gonna be really hard and I'll probably cry the hell out the night before or the night after. But you know what, in that moment it's about my nephew and my relationship with him and being like, okay. Cause I think in the long run it's gonna be better for me instead of hiding in my little hole. And there are times I'm gonna hide in my hole. There are times I'm gonna hide in my hole cause we all need to put up boundaries. But I'm gonna do this. I'm determined to do this and to sit there and enjoy that and be thankful for what I have with Liam and to be super thankful.
(00:51:13):
Sometimes I hate being thankful <laugh> be thankful for being able to have family that took me … I mean I've gone down there, I've visited, I've done things, I've thrown a football with my other nephew. But it was always easier cuz he was older. He came first and Liam adored him with the nephew. That was Liam's exact age. It was always so much harder. Yeah. But I'm, I'm gonna do it. I'm gonna do it before it's too late because I don't wanna regret that. And I need to, I I'm ready to. And I'm not saying for everybody that's not ready, especially in the first couple years … Yeah. Where everything is hard. It's, it's like you said grief. Grief is there throughout our whole life. Cause we did lose something. We lost our hopes and we lost our dreams and we're human. That's what I keep always saying, we're human It … there's nothing wrong with how we have felt.
(00:52:04):
It's just how we continuously to act on that. I might be mad at the world for this, but that's not my nephew's fault. That is not his fault. And of course if they were not so loving with Liam, it would be a lot harder. Yeah. I would be like, why would I waste my time? But that's not the case. I've got this amazing family. So, um, yeah, it's time and, and I think people will know when it's time. I, I'm sad it is 13 years later because while I can't do this with Liam, it felt so good to throw the baseball where I'm like, this is part of me that's been missing. And Liam loves basketball outside. Like we go around and we have to help him shoot and that's fun. But my sport growing up, playing with softball but getting out there and throwing that baseball, cause I haven't really thrown but actually going out there and playing with someone Liam's age thinking about what we could have been doing or what we quote unquote should have been doing. Cuz no, no we shouldn't be doing that. Like I said, it's not guaranteed. Nothing is guaranteed.
Speaker 1 (00:53:01):
I think it's amazing that you can talk to your brother and probably one day your nephew too, when he is old enough to understand, to explain why you needed time,
Speaker 2 (00:53:11):
You know, reality, me coming to my harsh reality with myself. Yeah. That he does take a lot of time, but you could make the time for one, one night down. You know, I don't really go away for many days, but you could, you have to make that time. And my, when we said I wanted to come. My nephew was just so sweet and excited about it. Or I'm like, yep, Jamie. It, it was the right thing.
Speaker 1 (00:53:33):
The feelings that we have are so complicated. You know, I, again, three children and Arlo's the oldest, so a 10 year old and an eight year old. There are things that they feel aren't fair and they don't understand. And, and I have to say, like we have conversations. I'm like, one day you'll understand. One day you'll understand why sometimes rules are different for him than they are for you. One day you'll, you know, one day. Right. And I think, I think that goes the same for cousins as well. Like they, they kind of get it and they kind of don't. And it's, it's just, you know, they probably get it more than we do or did.
Speaker 2 (00:54:10):
Yes, I have to say, because I do live with my parents and my parents give me so much support with Liam, but that has also taken away from so much time that my parents give to their other grandchildren. And they've got a bunch of 'em. I've got six siblings. I'm sure it's been hard on my siblings to not have that extra support. Just how understanding they have been of this situation and knowing that my mom and dad give so much to me and Liam and not taking that out on me or Liam. And that when my mom can help them where they're so grateful about that too, that right there from them blows my mind. Cause there was the longest time I felt guilty about that too. And I would tell them that and they'd be like, don't worry Jean. They'd blow my mind. And I'm just again, a blessed and I know how blessed I am from hearing about other people, about families that get upset or mad because grandparents are helping more with the child with say like someone like Liam than their kids. Overall, my family's been nothing but supportive.
Speaker 1 (00:55:17):
I think it's amazing and I think it's good that you're, you know, you're kind of pointing out the differences because you also have situations where family members don't even know how to deal with having, uh, grandchild, nephew, niece with a disability. So I think it all runs the gambit and our experiences are all different. I think it's beautiful that you're sharing how lucky your situation is in that regard. I also wanna make sure that we have time to transition Earlier. You're saying you, you know, you don't have any time for yourself. I think for a lot of us parents, primary caregivers, to a child with a disability who has a lot of needs, a lot of times we laugh at self-care because it's not really possible. Right? And if you do do it, you're sacrificing something else. And then you're dealing with that guilt and the guilt just eats away at you.
(00:56:08):
But Jamie, I have watched you over the years evolve from like milling wheat to all of these things. And so, you know, you gave us the background of, of where you were and adaptive PE which is amazing by the way, the, the, the way that life works out. That you have that background, but then you found something, didn't you, that that brought you joy. And I, I would like to hear about the evolution from how that started a little bit. And then I, you gotta, I mean the, the creations you're making, we are gonna plug what you're doing because you … people have to see the pictures. I am beside myself, so why don't, why don't I shut up and let you?
Speaker 2 (00:56:52):
So being home with Liam 24/7 not having constant help, it was petrifying to even shower sometimes. And I did not know hell the hell I was gonna keep doing this. I was like, how does anyone do this? How are they so calm? Is this just my child? Cause he hadn't been doing that at the hospital. So I needed to find something that I thought would be fun to do in the house, that would be mine. And I said, Hey, I'm, I got a book on bread and I'm gonna start baking bread. And I would just bake. And it turned into a way that, oh, I can thank people for their help. I mean, well and on everybody else for everything. I can't do much but I can bake, which I never did before. Liam. And I am not someone like with Liam, I pay attention to details.
(00:57:34):
But all my life it's been like, oh yeah, schoolwork, whatever. Mm-hmm. <affirmative>, okay, I'll get to this when I have to. But baking that fixation. Um, but it's like, okay, this is kind of fun because I would hold Liam at nighttime and we watched like all the Food Network cake decorating shows. I'm like, well why don't I try this? Yeah. That at that point, cake decorating didn't really come out too well. Um, I stuck with bread and I grew wheat one year and the growing the wheats real easy. It's just that you have to actually like take care of it. And I never got to it. And mice got into the garage and ate it. So I never actually ate the wheat. I grew <laugh> surprised. I saw that I found milling flour cause it's supposed to be healthier and I wanted to do whole wheat and I needed something else.
(00:58:15):
So I start milling flour and making sourdough different types of breads. And then it just evolved into like cookies. So I stuck mostly with like cookies and little things or cupcakes. People seem to love my stuff. Teachers, friends, nurses, just everybody. Neighbor. My … my street, my neighbors are amazing too. Mm-hmm <affirmative>, um, always helping whenever they can. I have one neighbor that comes out every morning when Liam goes to school to say hi. And when he gets off the bus almost every day he'll come out and get Liam off and on the bus with us and other neighbors that used to. But Liam went to middle school so he gets home too early now where the three boys and their dad will come out every day to say hi, hi to Liam. Even if it's only two minutes and Liam doesn't wanna stay out every day.
(00:58:58):
Just little things like that where I'm like, oh, you know, I'm gonna bake for people. This is a great way. And everybody seemed to love it. There we go. And then I decided I was going to do a hike for Make-A-Wish as a fundraiser where I had to raise $10,000. How am I gonna get people to donate? You know? And I probably didn't have to bake, but I hate asking people for money. Same. Hate it. And even for such a great cause where people were thanking me for doing this. But I was like, okay, I'm gonna bake for people. If they donate, I'm gonna bake them something. Occasionally I'll smoke a cigar. So there was a cigar shop that would have a big um, crawfish boil. And I talked to the owner, if you're in Virginia and you like cigars up in Northern Virginia to Tobacology, go to there, they're wonderful.
(00:59:41):
I was like, can I put up a table and raise money for my hike for Make-A-Wish? And the owner was like, of course. So I just did a whole bunch of cookies and things and overall I raised more than my 10,000. I had to do that day. But just with donations of course people were drinking, having a great time, but I'm just baking for everybody. And then, you know, people asking to buy. One time I sold Thanksgiving pies and I was like, oh, so covid hit and I felt like, I'm sure you did. We were prepared for this. I mean people whining about being isolated. I'm like training all my life. But I was like, okay. So you know, I just was like, maybe I should start a home base bakery and guess what I did? I'm, and my first thought was, okay, I'm gonna sell.
(01:00:21):
I love to make macarons and like drop cookies. I want that to be my focus. And so that's what I started off with is pies. 2022 came around and it was March. One of my friends that I had known from CrossFit was like, I want you to make my kids birthday cakes. I mean I liked making cakes but I did not like decorating them. I like to bake. And I was like, okay, you know the business with the cookies, it's all doing fine. I'll give this a go. So I made her cakes and I like to think that my stuff tastes really good. I like to use quality ingredients, attention to detail. Okay. I don't like to think it does. If you don't like it then I'm just not for you. No, I'm <laugh> and I made her cakes and I was like, okay, I think I might be able to do this. So I started taking cake orders that were just kind of basic. She let me do whatever designs and one of 'em was covered in fondant. I'm not as big of a fan of fondant and it was a hot mess fondant. But she was okay with it. Um, and it was wonderful cause she was actually a registered dietician and we bartered at that point for her to help me with my eating with cakes. Yeah, I know, right? That's
Speaker 1 (01:01:19):
Amazing.
Speaker 2 (01:01:20):
I know. Sweet, sweet person lover. And then I just kind of started doing more cakes. People were like, oh cakes. And that's just taken off where I'm like, this is kind of fun. I mean I love my macarons, I love my cookies. There's not really the money in the cookies, there's not really money in any of this really. I mean there's some, but with cakes you can add on decorations or trying to start to make like fondant figures. I'm still torn about covering cakes and fondant because fondant, because I do see it as a beautiful canvas. I just don't like the way it tastes as much. There is a very expensive brand from Europe that I might try cuz I am big on taste. Um, I do love like my buttercream cakes where everything is smooth, crisp, clean. Oh,
Speaker 1 (01:02:05):
And I have to pause you because just recently you posted a picture of a buttercream beer pouring cake, uh, that looked like it could be from “Is It Cake”? And it was buttercream and not fondant. I, oh my God.
Speaker 2 (01:02:20):
Eat buttercream. Yeah. I love that challenge of trying to work with buttercream and making it something that people might typically do in fondant because honestly most people don't like to eat fondant. Um,
Speaker 1 (01:02:30):
Can you explain, not everyone knows like okay, what they eat when they eat a cake. So quickly explain the difference between fondant and buttercream.
Speaker 2 (01:02:37):
So there's different types of buttercream first, but I'll, I'll use one that's more of a egg-based Swiss meringue. So it's not overly sweet like you might get at the um, grocery store. Softer, lighter and done, right, just delicious. And then fondant, usually you'll have buttercream under fondant or a ganache, but fondant is that really sweet. It can be hard after it sits out a while. Layer of just like sugar. If that's on top, that is great for making fancy fun cakes. Mm-hmm. <affirmative> it is good for that, but for eating it's not as good. And like say for weddings when you can get this white cake that's all fondant or do different things, it can be beautiful. But if you want something that's really tastes good, it isn't beautiful, you can, it can be done in buttercream, it can be. So that's what I enjoy. And I actually, I decided I would, my business has been doing well.
(01:03:26):
I decided I'd treat myself in December to a class. There's a, there's a sugar artist who I've been following for years and I never could justify spending the money on it cause I don't like to spend money on myself first. Mm-hmm. <affirmative> and I do rely on others for a lot. But now that I've been selling cakes, class is not cheap. And for me to be gone for it's, it was local also. But me to be gone for most of the day for a week, that's a big, big thing with my time. But I got to the point where I'm doing fine business-wise. Scheduled it with nurses and my parents and got to go take a class with a sugar artist. Um, her name's Maggie Austin. Her cakes are gorgeous. So working on making like sugar flowers. So flowers that look realistic out of pretty much powdered sugar and water and maybe some egg whites that they call it gum paste.
(01:04:16):
So it's similar to like fondant. It's just harder and stiffer and just love that. So I've started to introduce the sugar flowers now in the past couple months. Starting to get some sales on that and trying to expand what I do with the sugar flowers for this elegant look. I can get lost if I can put, if my parents will sit with Liam or if I have a couple hours when he's in school. Um, or if I get up early or stay up late, I can put on some headphones and I can get lost in the details of the sugar flowers and focusing on that. See that's what I love about that. Where there's not a care in the world other than I gotta get this cake out the door to spend hours, immerse some sugar and make this beautiful object. It's just so stress relieving.
(01:05:01):
And if you know anything about me, I'm like the biggest tomboy. I don't think we use that word anymore, but that's it. I'm proud of it. I'm a tomboy <laugh>. Hundred percent all my life girly things. Never until I started making these sugar flowers and someone gave me flowers, they'd be like, they're just gonna die. You know? I love going on hikes and seeing the flowers. Mm-hmm. <affirmative> out in nature, but like to have flowers in the house, I'm like, oh, I gotta keep 'em up. But now it's like I stop and I look at when I, for my birthday, I had friends gimme flowers and it's like I stop and I admire the beauty and the layouts of all them. And I'm just like, what is happening? It makes me slow down. That's what I love about that. So yeah, I'm trying to do more buttercream cakes that might have designs like my beer cakes probably not a shocker, but my um, bakery is called Sweet Gratitude Bakery because I did start this as a way to say thank you to people and that's still my mission.
(01:05:53):
And so I donate cakes now to a hospice group that will take them, they, they do work with children and also still saying gratitude where I'm baking for teachers or I'm baking for friends. And my friends have been amazing supporting me too. But I like to add on little extra things when they buy from me. But it's just a way I've just kind of got lost in my world. And then meeting a network of other bakers in this area that's allowed me to do something where I'm not caregiving. Even though I really only found this because of Liam. Mm-hmm. <affirmative>. Um, and I'm gonna check my texts cuz the nurse just text me from school. Sorry. Sorry. Thank you. As all understand. I know
Speaker 1 (01:06:29):
I might even leave that part in because everyone understands like that we are always on call.
Speaker 2 (01:06:35):
I was shocked that I've gotten this long actually with no real call or anything. But, um, oh, where do we go back to it? Oh yeah. So the, the bakery still like the neighbors that helped me. I love to be able to, I have samples or when I like tore a cake and I have little things which also brings me back to bread. I, I started following this wonderful person on Instagram. Um, and she helped me a lot with bread. But her motto with bread was rethinking Perfect. And this is how I really got into baking. Even though I obsess over my cakes and want them perfect. Especially with bread and sourdough. People try to plan out sourdough and they think they have this rigid, strict schedule and sure that does work great and maybe some of the most bread snob people can tell the difference.
(01:07:21):
But her motto was like, okay, we're gonna rethink perfect with this. We're gonna make bread fit into our lives and we're not gonna be bound to the schedule or what's expected of us when we're baking bread. If you make sourdough, you're supposed to like turn it, fold it, stretch it for so many hours, it's just feeding it. You're supposed to keep it on this schedule. And I was like, I can go with this motto with sourdough, but I also can go with this motto with life. Rethinking perfect talking to her about bread and baking and just making things fit to my life. This baking, this business is sure it's not perfect but why do we expect perfect or what the world thinks is perfect and baking's a lot like that. And being able to incorporate that into my life with baking with Liam, I said, this all just goes together and now if you order a cake for me, I'm not gonna be rethinking perfect <laugh>.
(01:08:20):
I mean I want them to be beautiful, but when I'm baking like bread or I'm baking for myself or friends and things might not come out. But if you have like a design in mind, this is where I get can get hyper fixated on things. Mm-hmm. <affirmative> and just be like, okay, I gotta do this. But that's a different, that's a different ballgame. But everything in my everyday life, baking things for myself, for friends or to say thank you for people I need to step back and be like, wait, let's rethink this. And I just love how it's all come together. Also, Liam's room is right next to my kitchen. Can't really when he's home if I'm with him. But trust me, he does not like it if I'm baking or that's when he likes to give me attitude. No I sneak it in. So it just kind of works and it's, it's so fun to see the joy it brings to people even when they're paying for it.
(01:09:05):
The joy for their parties. Or say for instance like the surprise when you give the bus driver the cookies and they're not expecting that. And I'm like, it's just a cookie. But sometimes it's more than just a cookie. It's just that thought that you were thinking of that person. And that's what baking has been about for me. Also, again, my eyes wide open. What really is food about? What should food be about? Yes, we all use food for different things. A lot of times for me it's been stress eating, but it's also about relationships with people. We should be able to sit down and break bread with people no matter our beliefs. Yes. Especially nowadays it can get hard but I think that we can all find some common ground through food.
Speaker 1 (01:09:46):
You think about food like you have to eat to survive or at least have sustenance. Whether it be using a feeding tube like we have to eat like right. It's part of our lives multiple times a day. And when you can do it together or share a creation you've made, like it makes it that much more special and important. Like why not make those moments beautiful.
Speaker 2 (01:10:11):
And which is also interesting cause like you said, if you have a feeding tube you need that. Liam, he loves to taste and so he'll taste my stuff. He has like, uh, he, he loves salty pretzels. He has a certain brand of pretzels that he likes and that is it. He wants that pretzel and he wants to taste that you can't fill in with anything else. It's pretty funny. But he loves helping me pick out cakes, designs, picking the flavor, surprising his nurses with goodies. He loves that and he could care less most of the time. Oh so annoying. My godsons baked for me the other day and he wanted their cookie. It was good. And he did not want any of mine ever, but he ate their cookie. He tasted their cookie and I was like his little stinger, which was, it was actually really great. It was so cute. It was so cute. I was like cute little stinker. But he still finds that fun in like his design. We always do a fun design for his birthday and people will come have it and he wants to give people loves to give people Valentine's day, I gotta make cookies for all his teachers cause he wants to it to him. Aww.
(01:11:14):
He's not gonna taste it cuz he wants a salty pretzel. And so it's, it's just that it bring so fun. It doesn't take much to me happy as you probably tell.
Speaker 1 (01:11:26):
I, but this is the thing that I wish that more of us would realize is that we don't have to have an all-inclusive vacation to the, to The Bahamas. Like we can find joy in the every day in the imperfect
Speaker 2 (01:11:41):
Erin. We don't have to, but it sure would be nice right now <laugh>, okay,
Speaker 1 (01:11:44):
I'm not gonna lie, that is such a fantasy of mine.
Speaker 2 (01:11:51):
Like, oh Erin
Speaker 1 (01:11:52):
Thank you for being honest because you know as, as joyful as cooking could be, I would love for not having to cook for a week or do laundry or
Speaker 2 (01:12:01):
Right. Oh vacation.
Speaker 1 (01:12:04):
Oh,
Speaker 2 (01:12:05):
Oh I know. But yes, yes. We have to choose to find the happiness and we can't always find it. And it's not gonna be like that. Cause I want that damn vacation. I would love that vacation all inclusive on the beach. Oh yeah. I'd take time off from baking easily
Speaker 1 (01:12:22):
<laugh>. But the reality for so many of us, right, and this is something I mean you struck on is as caregivers you're working as a caregiver but then you know, you're either sacrificing an income or sacrificing time with your child or sacrificing, you know, having other things like our child is not a burden, but there's a financial burden to having a child with a disability. And a lot of times it comes in sacrificing income and making money because you cannot, you have to have a flexible job. You and I both have to be able to look at our phones right now and if the school calls we gotta be able to say goodbye. Yeah. And you can't have a nine to five job that does that. And so you know what you've created for yourself. Jamie, it sounds like not only is it an outlet, but it's also income. It's also kind of a form of self-care. And it sounds like joy, I mean is that
Speaker 2 (01:13:23):
It is overall. I'm trying to find that balance, like you said also sacrificing time. Cause I, I am a people pleaser and when I get requests for orders I wanna take everything on. I took two last minute, ones last week and just, it wiped me out. I do give my time, I give my quality time and I find sometimes if I'm like, okay, you know I might get snippy with Liam if he wants something or I'm like, you gotta give me two seconds Liam. Um, but this again, it's very typical but also, you know, I'm on my feet doing it the whole time. It might take away from, cause I loved to work out where I was on my feet or I had to give up some of my workout time. Oh it sounds so tough. I have to give up my workout time. But I love that.
(01:14:04):
I love that for me. Mm-hmm <affirmative>, it's get, cause I don't get out much but I go to the gym, I'm around other people but that's also very therapeutic for me. Or even say just watching a show, you know, curling up and watching Netflix when the nurse gets here at 9.15, 9.30. But if I gotta stay downstairs and I gotta bake cause I took on those orders and you know, it takes away from that or for myself care for myself or I'm tired and that's not like, again not a complaint, it's all now finding the balance of being like okay, I need to only take this order or I can't take last minute ones because I need to be able to plan everything out. So if things go wrong, I at least have time to make up but I'm not rushing cuz I'm not gonna put something out that I'm not proud of. I mean I do with things, if I mess up and it's still edible for neighbors or family, I'll be like, hey, this is not selling quality. And they're like, oh we have no problems even you're non-selling quality, you know, I'll give that out. No problems whatsoever. So that takes also though from my time from Liam, my time from sleep, you know, with my mind starts racing about that or this order which went Jamie, it's an order, it's a cake but I'm making someone's event special. So I do, I take that very seriously.
Speaker 1 (01:15:22):
I mean you're telling me all of this, you mentioned early on how important it is that you outlive your son. Yeah. And so I'm hearing a lot of, you know, watching your macros, you know, working out. Yes. Jamie, what do you do to take care of yourself to make sure you know you're in the right mental and physical space for yourself and for Liam?
Speaker 2 (01:15:45):
First thing I do is not beat myself up. if I don't do what I think I should be doing to take care of myself. Cuz I used to do that, oh no, a bad day and I just sat down and ate a thing of ice cream or all my chocolate chip cookies. First thing is not being hard on myself. And that's probably only in the past two years where take a deep breath and let it go. It's done. Cuz guess what? I needed it in that moment. When I start beating up on myself for everything I should, I think I should have done. It gets worse first thing, be nice to yourself. Second thing is I love to lift weights. Love it. I've always been into sports. I don't really like cardio. I probably need to do some just for, you know, general health. But trying to build more muscle for my bones, my strength.
(01:16:36):
And so that when I'm in resting state, cuz the muscle is going to burn more calories, more muscle. You have, you can burn more calories. So when you're not doing anything, you're gonna burn more calories with muscle. I still have like from caring from Liam, I have hip issues right from lifting them for so many years where I knew I was doing it improper. But it keep, he can't support his own head. You know, his neck would snap. So it's not like someone who has low tone, he has nose tone. I knew it was wrong, but guess what, what am I gonna do? Um, we do have a lift now, but I still have a buildup so it makes that harder. So I go, I lift, we'll do a little cardio. I used to go five to six times a week, but as I keep getting older, I'm now four times a week.
(01:17:14):
Cuz guess what rest is important. And I do work with my friends, still my friend, the dietician. Mm-hmm <affirmative>. So I went into a calorie deficit last January for three months where I lost some weight. But then with females we're so often we're in calorie deficits, we're always trying to lose weight and that's not healthy for your body. So since like last March, I've just been maintaining my weight. Uh, not where I wanna be, but you know what, that's gonna build me up and my body needs that a break from trying to always be in calorie deficit. And sleep will be better, rest will be better. Muscle will build. So February, I had my birthday in January, which I celebrated que um, happy birthday. Thank you. It's been a week. I've been in a calorie deficit and when I say calorie deficit, when working with this woman as a female, she had me eating up to about 2300 calories a day. So my calorie deficit right now is starting at like 2150.
Speaker 1 (01:18:06):
I'm so glad you said that because I think so many women still think like 1200 calories. Yes.
Speaker 2 (01:18:12):
No, you
Speaker 1 (01:18:13):
Can't live on that.
Speaker 2 (01:18:14):
I am hoping not to get below 1800. And it's not really about losing weight. I don't care about the number. I wanna feel good. I love being athletic. Sure. I wanna tighten up, get a little bit more muscle, be more athletic looking. But it's also about, this is when I feel my best with Liam and stress. If I need to stop this sooner, we will. And there's also times when, guess what, if I'm doing this for three months in a calorie deficit, if I wanna go out and have a piece of cake or do something here and there, I'm gonna do it. If this is not all or nothing, but I wanna be healthy and I wanna be strong and I wanna be well fed, I do not wanna be hungry. I mean, I have my background in health and physical education, but I'm like, no, please love yourself first.
(01:18:57):
Love yourself first. And that's hard. And it's hard to eat well, okay, for some of us it's not hard to eat. <laugh>, <laugh>, stress eating what I'm sure as many of you all can relate to, right? Oh man. But I also find for me, when I do pay attention to what I eat, I can keep my stress eating, um, better under control. And then when I do have my time, especially right before my period when I need that chocolate or I need that, guess what? I did it, my body needed it. And the next day I'm back on track. Which has been a big change because when I would be mad at myself, I'd mess up one day and it's not even messing up, I'd just have a day where I eat more and then I'd feel bad and the next day I'd get so mad at myself.
(01:19:38):
I'd keep eating. Yeah. And when I say keep eating, I mean overindulging because we need to eat. I'd keep with the chocolates, I'd keep with this, you know, I'd keep eating the ice cream or the cookies. It was counterintuitive. So just be easy. Especially, especially if you're caring for someone else. I mean, we are so tired. We are so burnt out from everything. And being in a calorie deficit and working is extra stress on your body when you need that rest day. Even if it wasn't planned today, I was not, I was gonna get up early, go to the gym, which I love to do. But my over with the baking, my sleeping had been horrible. I woke up this morning and I was like, I, I can't do this. I want to, I really want to for my mental health because I need to get out. But in the long run for my mental health, this is going to be worse. Your bo our bodies are not recovering and rest is more beneficial right now than a one day. As long as I can keep my eating on track, it's gonna be okay. And in the long run, this is gonna pay off because my workout tomorrow, which I'm itching to get to, it's gonna be better. It's gonna be better. Right.
Speaker 1 (01:20:50):
It'll be better. And I think too, it's important to remember that the situation that we're in, a lot of times there's not time for ourselves. And so sometimes we do turn to food or what we consider laziness because we are just tapped out. And that's an easy fix that gives instant gratification.
Speaker 2 (01:21:11):
Oh and it taste so good in that moment when you get, you eat that delicious food. Just the hormones, the rush. I love that. Sorry, <laugh>. Yes,
Speaker 1 (01:21:20):
I get it.
Speaker 2 (01:21:21):
Oh, I'm down and give me some good sweets and I just get a boost.
Speaker 1 (01:21:26):
Oh, you're making me hungry. I have one last question. Okay. No, no. Cause we're we like, we've gone and I, I've, you've got me, I've got other ideas based on what we're talking about. Jamie, I think we should do a self-care episode, an A D H D episode, a nutrition episode. But before we go, I want you to plug your business because you mentioned the name, but tell us where we can find you. Okay. Tell us, tell us all the things.
Speaker 2 (01:21:53):
I'm super bad about that too. About plugging. I'm trying to get better with marketing because I'm like, if people want something they'll come to me. Which obviously you gotta know. Um, so I do have a website, but you can't order on the website. It's not very good. I probably should up do that website, but the easiest way to get in touch with me is on instant gra uh, instant Gratitude in um, instant uh, Instagram. Can you tell I'm tired. I
Speaker 1 (01:22:17):
Can. Um,
Speaker 2 (01:22:18):
It, my name is just sweet underscore gratitude underscore Bakery. It's pretty easy. Sweet Gratitude Bakery. And then Facebook, I'm Sweet Gratitude Bakery. Also, I also have email, sweet dot gratitude dot bakery gmail.com And those are the best ways and you'll see my progress there. And I, I just keep, I think this year's gonna be really good with what I'm able to create. I think it's gonna be a lot of fun seeing my growth cuz even in the past couple of months, just even like the quality of my pictures, the quality of, not the quality but just the designs. I'm willing now to be like confident in my skills to do
Speaker 1 (01:22:57):
Well. And I mean, like I, I used to live in Virginia, I had relocated and I can't buy anything from you until I visit. But I love following your pictures. Thank you. The pictures are amazing.
Speaker 2 (01:23:12):
Thank you. I just made a bourbon cake that I tell you if you look bourbon, this cake, it was old fashioned cake. I do need to up the levels of the bourbon in it. It was, ugh, like I just, I could get lost in that cake. I don't drink much. I mean I enjoy a drink here and there, but just the depth of the cake and the elements of it where it's just like, oh Erin.
Speaker 1 (01:23:35):
I bet like a sweet smokiness almost.
Speaker 2 (01:23:38):
Yeah, I did not put any liquid smoke in this one. There was that option, but you know, it's like the cake has like an orangeish flavored profile to it. And then there was a um, cherry bitter preserve, which I'm gonna put in a middle, which I'm gonna put more bourbon in next time. And then it was a brown buttered, a brown butter buttercream, which has a caramel. But I'm also gonna make that a stronger bourbon cuz if you're drinking an old fashioned, which I cannot drink cause it's too strong for me. You want your bourbon taste. So it just needs a little bit more. Okay. Maybe a lot more bourbon in it. But the flavor profiles are all there. And Erin, if you come down there girl, we can sit around, have a drink and I'll make that cake or cupcakes and we can hang out. And you don't have to pay for that because that's what I like to do. The gratitude, I mean,
Speaker 1 (01:24:24):
Yeah.
Speaker 2 (01:24:25):
You know, you can buy something else, but let me make something for you. That would be fun.
Speaker 1 (01:24:28):
I'll buy your Macrons cuz I have a Macron addiction, so you know. Oh, perfect. Yeah. Perfect. <laugh>. And now my mouth is watering and oh,
Speaker 2 (01:24:37):
I'm like, oh, I wanna go eat sugar. No <laugh>.
Speaker 1 (01:24:41):
Well on that note, we can go do that. Thank you listeners for joining us. We're just getting started with this podcast and cannot wait to bring you more. Please rate, review and share us and tell us what you wanna hear. We've got tons of topics in the pipeline and are always welcome to ideas. This is the Odyssey Parenting Caregiving Disability. I'm Erin Croyle. We'll talk soon.