Metabolically Speaking

9. Cooking for Love: Finding Hope After a PKU Diagnosis with Brenda Winiarski

• Ajinomoto Cambrooke, Inc. • Season 1 • Episode 9

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Cooking for Love: Finding Hope After a PKU Diagnosis
With Brenda Winiarski 

Brenda Winiarski shares her journey from speech pathologist to chef, shaped by the moment her daughter was diagnosed with PKU through newborn screening. What began as fear and uncertainty soon became a determination to ensure her daughter could still experience the joy, connection, and celebration that food brings to everyday life. Along the way, Brenda opens up about the sense of loss many parents feel, and how she channelled that into something hopeful and empowering.

In this episode, we explore how Brenda taught herself to cook low-protein meals through trial, error, and plenty of kitchen disasters, before rediscovering her love of cooking at culinary school. She reflects on the satisfaction of mastering recipes, the importance of taking that first step, and how simple, playful approaches, like turning food weighing into a game, can help children build confidence and independence. Brenda also shares practical advice for families, from building relationships with local restaurants to becoming part of a supportive community early on.

We also hear the story behind Cook for Love, and how Brenda’s personal mission grew into a global resource supporting hundreds of families navigating PKU. At its heart, this is a conversation about resilience, inclusion, and ensuring that every child, regardless of dietary restrictions, can feel the joy of food and the experiences that come with it.

Disclaimer: The opinions expressed here are those of the guests/authors and not necessarily reflective of the views of Ajinomoto Cambrooke Inc. Individual experiences described herein are unique and not necessarily representative of typical outcomes.  The content shared today is for educational purposes only.

Show Notes 

·      Get in touch with us: MetabolicallySpeaking@cambrooke.com 

·      Find out more about Cambrooke: www.cambrooke.com/about 

o      www.linkedin.com/company/cambrooke-therapeutics

o      www.instagram.com/ajinomoto_cambrooke

o      www.facebook.com/AjinomotoCambrooke

·      Maridith Baker:

o      www.instagram.com/phenylketonuriaandme

o      www.linkedin.com/in/maridithbaker

o      www.facebook.com/maridith.baker

·      Resources from Brenda: 

o      Cook For Love Website: Cook for Love - Low-Protein Recipes 

o      Cook For Love Facebook: Cook for Love - Low Protein Cooking for the PKU Community | Facebook

o      America's Test Kitchen Perfect Vegetables link: https://www.amazon.com/dp/0936184698 

o      America's Test Kitchen Just Add Sauce link: https://www.amazon.com/dp/B079KSXV8S

o      Raising an Emotionally Intelligent Child link: https://www.amazon.com/dp/0684838656

 

 

 

 

 

 

SPEAKER_00

When a child is diagnosed with a metabolic condition, the news can feel overwhelming. For many parents, the diagnosis brings fear, uncertainty, and the daunting responsibility of managing a lifelong medical diet. But for one mother, it also sparked a promise. In this episode, we're joined by Brenda Winiarski, speech pathologist, turned chef, and founder of Cook for Love. After her daughter was diagnosed with PKU as a newborn, Brenda made a simple but powerful promise that she would still experience the joy of food. That promise would eventually lead Brenda to culinary school and the creation of a global community supporting families living with PKU. Together, we explore Brenda's journey from those early days of uncertainty to building a resource that has helped thousands of families learn how to cook, connect, and navigate life with PKU. Join us for this heartfelt conversation on Metabolically Speaking about resilience, community, and the power of cooking for love. Welcome to Metabolically Speaking, the podcast that dives into life with inherited metabolic conditions. Proudly brought to you by Cam Brooke, delivering therapeutic nutrition for more than 25 years and empowering families to live without limits. I'm your host, Meredith Baker. I've lived with PKU my whole life. So I know the ups and downs and all the in-between moments that come with navigating a rare condition. Each month I sit down with experts, advocates, and people with lived experiences for honest conversations about what it really means to live with a metabolic condition. Whether you're newly diagnosed, supporting someone you love, or have been on this journey for a while, this space is for you. So settle in and let's get into it. Joining me today is Brenda Winiarski. Brenda is the founder of Cook for Love, an online community supporting families living with PKU. After her daughter was diagnosed with PKU as a newborn, Brenda shifted her career as a speech pathologist to train as a chef. Today, she shares low-protein recipes and practical cooking guidance with families around the world. Together, we explore Brenda's journey on how one promise to her daughter grew into a community supporting families far and wide. Brenda, we're so happy to have you here with us today. Thank you for joining.

SPEAKER_01

Well, thank you so much for inviting me.

SPEAKER_00

Of course. Now let's get started. We have some really inspiring stories to share today, and I cannot wait to hear more. So, starting off, your story with PKU started before your daughter was born. Can you share with us how your journey began?

SPEAKER_01

Absolutely. So, as you mentioned in the introduction, I was a speech language pathologist and I worked in early intervention and I had a specialty in feeding issues. So I worked at a hospital-based early intervention center. Um, we did home-based therapy, and we had kids that we saw on a weekly basis, and then we also did evaluations probably two or three times a week. And we would just get a cover sheet that had like a basic list of the child, his or her age, what was going on, any diagnoses. And I got this piece of paper on my desk and um had this little boy, and he had some feeding issues and some developmental delays, and he had this thing called PKU. And I was like, huh. What is that? I feel like that sounds familiar. I feel like I read about that on the back of a sweet and low. Uh so I did a quick internet search and well, first I asked all my colleagues, no one had heard of it. Um, and then I did a quick internet search and I saw that this child was on this really, really highly restricted diet. Um, and the diet was going to determine how he was going to do. And he had feeding issues on top of it. And I couldn't imagine the pressure that that mom was under. Um and I met with the family with a developmental pediatrician, and we started going through our evaluation. And part of it starts with letting the kid become familiar and just chatting, chatting with the parent. And I was just asking the mom, I was like, Oh, you know, how many words do you think he knows? What words do you think he's familiar with? And you know, she said the typical, you know, mama, dada truck. And this little guy was busy playing with the toys, and she said, Oh, and he knows the word dance. And all of a sudden he started to shake his little booty. I fell in love at that first wheel. Um and the family was the family qualified for services, the child qualified for services, and they were a little too far north, though, for our agency to do the treatment. So I we had the evaluation. I called up the mom a few days later just to kind of tell her what the process would be. And I could tell as she was talking to me that her her voice was cracking. And I was like, What's going on? And she said, Well, he hasn't eaten. He had been sick and he hadn't eaten in a few days. And I could hear the worry and panic in her voice. And I said to her, Listen, I get off work at 4:30. I'll come over after. Um went up, met the family, and kind of fell in love with all of them as well. Like this was just an amazing, amazing mom. Um, just she was incredible. She was trying everything and it just wasn't working.

SPEAKER_02

Yeah.

SPEAKER_01

Um, so I went back to my supervisor. I was there probably for a few hours that day, and and I went back to my supervisor and I was like, listen, I think it's really important that we consider treating this child. Uh, because my reason that I gave her was because it was really important to establish that relationship with the metabolic team. My real reason was because of that little wiggle. So um I did manage to convince her and I became his his ongoing feeding and speech therapist. Um and this guy he broke every pattern that I knew. Uh, and I had been doing feeding therapy for a while. He just he was a bit of an enigma and a bit of a challenge. Yeah. But the cutest human being in the world, um, he was he was so averse to feeding that you know, he would have he would start crying once he was in his high chair. He would gag when his baby sister was being spoon fed. That's how far it had gone. Um, and he was less than two years old at this point. So it was really, really, really a challenge. Um, and I would say to the mom, I want to eat what he's eating. And she was like, No, you don't. And I was like, Yes, I do. This was pre-Cambru.

SPEAKER_02

Wow. Right?

SPEAKER_01

There was, there were, there were no, there were no great options out there. The pasta was so rubbery. The bread was in a can. Uh, there was, which I still don't understand, there was like a tomato powder that you rehydrated for sauce. Why can't you just use marinara sauce? But but that's what he was eating. And when I was eating these foods, I was like, wow, I'm like, imagine having sensory issues and oral motor issues and and all of these things on top of the texture that was just so strange. Um and it really, it honestly just became a challenge that intrigued me. Yeah. And this this was a mom who worked tirelessly in the kitchen. She just kept trying to find things that he would eat and uh they would just get rejected. And she was feeling so defeated and she was so worried. And you know, it's uh something for all of us out there that have been through this as a parent, but it's really hard not to take that rejection personally. Um, and it's really hard to feel successful as a parent if you can't provide that basic need of feeding your child. So my heart went out to her. Um and and I loved him.

SPEAKER_02

Yeah.

SPEAKER_01

So it was, it was a it was an amazing sort of combination and just gift from the universe. Yeah. Um, and the the only food he would successfully, like he would take without a problem, were these frozen potato waffles from bird's eye that you could only get in Ireland and the UK.

SPEAKER_02

The mom was actually Oh my gosh.

SPEAKER_01

So every time she would go home to visit her family, she would come back with a suitcase of these frozen waffles. Anytime family came over, they would bring this to her. And I was like, all right, well, we have to figure out how to make these waffles. So started my early journey into the kitchen in the low-protein diet. And I tried, I think my husband and I ate potato waffle flops for well over a month. Um, I called Bird's Eye in Ireland. I was like, please help me. I'm like, I can't, like I, you know, looked at the ingredients. I tried to figure out based on the nutritional label what could be in there, how much it could be. And I happened to get a sympathetic ear of someone who wouldn't divulge their secrets, but gave me a few hints. And I thought, if I could learn how to make this potato waffle, I could start to incorporate different vegetables into it. I could then start to add some texture, I could expand his diet that way. Um and, you know, eventually he we started to have some success. He was doing much, much better. He started to enjoy food. And he also, we realized he needed some physical therapy, he needed some other services, and it was decided that he would probably be better off in a school-based program where everything could be provided for him. Yeah. And again, typically when this happened, I'd call a week after a kid transitioned and, you know, make sure everything was okay and wish them luck and they would be a fond of memory, and that was it.

SPEAKER_00

Yeah.

SPEAKER_01

Two weeks later, I called again about something. Yeah. A couple of weeks later, the mom called about something. We just kept in touch. Yeah. Um, and you know, fast forward about a year later, I was um still in touch with them and I had my daughter.

SPEAKER_00

That's incredible.

SPEAKER_01

And uh when she was in the hospital and they did her newborn screening, the nurse there said to me, Oh, this is a newborn screening. Don't worry, it's never positive. And if it is, your kid's gonna be retarded. Well, she said it to the wrong person, and I went after her. I was like, that's actually not what that means. Thinking of this family and this guy, this little guy. Yeah, I was like, that's that's not what it means.

SPEAKER_00

And this is pre-diagnosis.

SPEAKER_01

This is pre-diagnosis. Yeah. Um, I was so enraged when I got back from the hospital, I wrote a scathing letter to the head of the hospital telling that they needed to do more education on newborn screening. And again, just because I was so mad that maybe this was the information that this mom had received. Well, six days later, um, I got that dreaded call.

SPEAKER_02

Yeah.

SPEAKER_01

And uh when I came back from the very building that I worked in, after meeting with the very team that I had a professional relationship with.

SPEAKER_02

Yeah.

SPEAKER_01

Um, you know, I came back and of course you think it's a mistake, it's this, it's that. It wasn't. Um, but I came back to I came back devastated, but there was a message on my machine from my little guy calling to see if I had my baby yet. And, you know, the next day that that family came to my house, um, they had a low-protein food for me to try. Um, and they had love and support. They were the ones supporting me. And I will never forget that. I will never forget their kindness. I will never forget that gift that I had of having a heads up, just a clue. And it was only a clue as to what this disorder was. So that was my that was my introduction to people.

SPEAKER_00

That is incredible. And just what are the odds? You know, like there's so many things that I had to add for you to get to where you were with that diagnosis. So that's incredible. Um, it's the universe looking out for me for sure, and your daughter as well. So yes. Um, when your daughter was just six days old, as you mentioned, you received the information that she does have PKU. You described that moment previously as feeling like someone had handed you her brain. What was going through your mind at that time with the information you knew about PKU?

SPEAKER_01

You know, it was honestly, it was more like, here's your daughter's brain. Good luck with it. Um, you know, I was so used to, as a person who was an early worked in early intervention, there's a problem, a professional comes in and helps. Yeah. Um and this was a case where the responsibility felt like it was just falling on me. Um and I knew how high the stakes were. Yeah. And I knew from my experience as a speech pathologist uh that how tricky feeding issues were. And I also knew from working with my little guy that no matter how hard I tried, I might hit unexpected roadblocks.

SPEAKER_02

Yeah.

SPEAKER_01

And that terrified me. Um, I knew I was super lucky that there was a treatment. There are so many people who are born with issues and there's nothing anyone could do. Um but I was also so overwhelmed because it was all in my hands, or that's how it felt. And there was a risk of a delay. And that was always, you were always in the gray. You were always it was always looming, like something could happen, and her her path could change. Yeah. And it would be out of my control. And um, you know, again, that's super high risk that maybe she would decide not to take her formula or she would not eat the foods that she was supposed to eat on a daily basis. And you know, as a speech pathologist, I also knew that you you could make a kid do so many things. Like as a parent, even if they don't want to clean up, you could do hand over hand and you can you can force the issue if you need to. Um but the one thing you cannot do without there being horrific repercussions, you cannot make a child eat. You can entice them, you can uh try to persuade them, you can do, but you can't make them do it. And you know, that's that's a terrifying feeling as a parent. And I thought, you know, I was also thought about all of the situations and where she would feel left out and all of the situation, all of the food that she couldn't have. I didn't understand yet what she could have. Yeah. Um, but but that was all you could think of. And you know, honestly, all I wanted to do was just fast forward to her being five, seeing that she was okay, then rewinding and and just enjoying and treasuring that first year instead of there always being kind of like a cloud of worry and fear, yeah, that was just kind of looming over her head. It's it's a very overwhelming thing as a parent, um, and a gift because there's something you can do.

SPEAKER_00

Yeah. In that moment, you made a promise to your daughter that she would still know the joy of food. And it's almost like you made that promise in a different way to that little boy as well, previously, before your daughter's diagnosis. Why was that promise for your daughter and possibly for the little boy too, so important to you?

SPEAKER_01

You know, food is everywhere, it is at the center part, central part of every social gathering.

SPEAKER_00

Yeah.

SPEAKER_01

And, you know, in the beginning, as a parent, and I'm sure many parents that are listening can relate, you're going through the all the things she can't have, and you're mourning all of these experiences that you had envisioned to be part of your life. And you're thinking about what's gonna happen at Thanksgiving, what's gonna happen on her birthday, what's gonna happen when she gets married? What, like, I mean, you go crazy in terms of the projecting and the worry. Yeah, and you know, I asked my dietitian at the time, like, what what do I do for her birthday? Like, like what happens there? And my daughter was probably I don't even know if she was two months old at this point. And the dietitian told me that I would buy a regular cake from a bakery and I would bake her a low protein cake. I would cut a slice of the low protein cake out, remove a piece of the high protein cake, and put the piece of low protein cake into the high protein cake.

SPEAKER_00

Oh wow.

SPEAKER_01

Because you would never want your guests to have to eat that cake.

SPEAKER_00

Oh wow.

SPEAKER_01

And she said that to the wrong person. It was it was really like a a challenge, and I was like, not in my house, lady, that's not what's gonna happen. Yeah, she didn't remain my dietitian for a variety of reasons. But but do you know it in my head, all I kept thinking was there's something wrong with her liver enzyme, not her taste buds.

SPEAKER_00

Yeah.

SPEAKER_01

And if I didn't love it and would not serve it proudly to anyone who was at my house, then I was just gonna work harder until I got there. And it's not only that I didn't want her excluded, I wanted her to enjoy what she was eating. I wanted her to be able to share it with her family and friends. I wanted them to enjoy it as well. And, you know, you know, at some point in her life, she's either gonna accidentally or out of curiosity try something that is higher in protein. And I didn't want it to be something where she was like, seriously, mom, this is what it was supposed to taste like. Yeah, I wanted it to be okay, mine is just as good.

SPEAKER_00

Yep.

SPEAKER_01

It's inconvenient, but it's just as good. And you know, I wanted her to know the joy of a shared meal and a good meal. And I also knew that if she had had a physical disability, I wouldn't have hesitated to adapt my house. So I could certainly adapt my kitchen.

SPEAKER_00

Yeah, that's incredible. I love that statement. Yeah, yeah. In the early days of PKU, many parents struggle with how restrictive and unfamiliar the diet can feel. What did learning to cook low-protein meals actually look like in your kitchen during that time?

SPEAKER_01

It wasn't pretty. Um listen, that uh if I'm being really real, uh, that promise eventually turned into a passion. But it took time to get there. Um and and by passion, it it's kind of a nice way of saying a very, very unhealthy obsession. Uh, it was, you know, the first few months before she when she was just on a bottle, I was making every recipe in the only low protein cookbook that existed. And I just when my husband would come home, I would be on the floor crying. The kitchen would be a disaster. There was nothing to eat. Um, I was like, this isn't gonna work. I don't know how, I don't know how I can do this. I don't know, I don't know what to do here. I was at such a loss. Um and if TV wasn't on Sesame Street, it was on a cooking show. And I was watching the cooking show and I was like, well, what could I do? Like she can't have that. What could I do instead? Um and at that time, this was before online courses. I was writing away and getting huge binders on food science and taking, you know, mailing in my tests to try to understand like why did things work? Like what, you know, why did this binder work and what else was out there? Yeah. And it it it was an unhealthy obsession. Um but it was the only thing that was keeping me together, if that makes sense. It was, you know, there were countless, countless disasters in my kitchen. Um, but but eventually I started to have some success. Yeah. And what happened in that moment when I had that success was more pleasure and satisfaction than I ever had from any other job and control.

SPEAKER_02

Yeah.

SPEAKER_01

It was feeling like okay, I I can't. Maybe I can't fix this, but I can make it better. And maybe just maybe I can honor that promise.

SPEAKER_00

That's incredible. What year was this happening? That there was one cookbook. Do you mind sharing?

SPEAKER_01

2000. 2000.

SPEAKER_00

2000? Okay.

SPEAKER_01

Yeah.

SPEAKER_00

Yeah. Very interesting. That's just so much information that is so incredible. So thank you for sharing that. The promise of enjoying food eventually led you down the unexpected path, including going into culinary school when your daughter started kindergarten. What motivated you to make such a big career shift with this overall? All right, true confession.

SPEAKER_01

My real dream was to sponsor someone else to go to the culinary school and let them in exchange devote some time to developing some recipes for our community. I kind of realized that no one other than someone with a PKU or another inborn error of metabolism or someone who loves someone with the disorder would have the dedication that I was looking for. And you know, after the diagnosis, having to be in the kitchen versus wanting to be in the kitchen kind of changed my attitude towards cooking. I had always enjoyed cooking. It was never an issue for me. Um, it was never something that I dreaded, but it became something that I started to resent. And I resented the ease of family members just showing up at the holidays, not having to spend hours and days trying to cook for their kid. I resented listening to my friends complain about stupid things like, oh my God, I tried to give them a frozen pancake and they didn't eat it, so I had to make a waffle too. And I was like, honey, you're talking to the wrong person right now. Yeah. And I resented just watching people just taking things off their plate and giving them to their toddler. And I didn't like feeling that way. It was so not who I am. And I began to think that maybe I was the one who should go to culinary school. That I loved learning. And how cool would it be to surround myself with people who were experts?

SPEAKER_00

Yeah.

SPEAKER_01

And maybe they could help me and maybe I could reestablish that love I had for cooking and shift my mindset because I I didn't like, I didn't like who I was in that moment. And I didn't feel like it was a true representation of who I am. But it nonetheless, it was how I felt. It was part of the grieving process, I guess.

SPEAKER_02

Yeah.

SPEAKER_01

And, you know, I I wanted that to let go of that resentment. And again, accept that while I couldn't fix it, I could make it better. Like that was what I just kept telling myself. And I also knew that nothing made me happier than when I mastered a recipe. And that's never changed. I still feel that way. And I was not sure what I was going to do with this degree. I was not sure that I wasn't going to go back to speech pathology. Yeah. I had no idea. Um, but I knew at the very least it would help me let go of that resentment. It would help me honor that promise. Even if it was just for her, it was worth it.

SPEAKER_00

Over time, your personal journey evolved into Cook for Love, which is now a huge resource for families around the world. How did the idea of Cook for Love first begin?

SPEAKER_01

Well, we're gonna probably touch some of the touched upon some of this already. Um, I really feel like the universe gave me a leg up, right? I knew a PKU was before my daughter was born. I had training in feeding issues, so I could avoid some of the pitfalls. I had been a vegetarian for over 15 years. I knew how to cook vegetables and make them delicious already. I was a weirdo because if I went to a restaurant and I had a dish I liked, instead of going back to that restaurant, I had to figure out how to make it. This is all pre-diagnosis, pre-PKU, pre-diagnosis, pre-mediately. It's just who I was. And I liked to cook, right? So I just felt like it was time to repay that debt, that gift that I got. And when I enrolled in culinary school, I didn't know where it was going to leave me. Um I knew I'd be giving back to the community in some way, but I just wasn't sure how. And prior to starting school, I had volunteered at our clinic and I did monthly cooking classes for the teens. And I loved it. Like I really, really enjoyed working with them. And I was like, oh, could I do this on a bigger scale? Could I travel? Could and I was like, I can't. My kids are too little. Like, I can't. It sounds cool, but the reality of it was it wasn't gonna happen. And I was like, I wonder if I could ever do a website. And I would tell people and they would burst, people that I knew, they would burst out laughing because I am so incompetent when it comes to technical stuff. They're like, how are you gonna do it? I'm like, I don't know. I'm gonna figure it out though. I'm gonna somehow figure it out. And I found a web developer and I was like, this is kind of what I want to do. I learned how to code. Like, oh my gosh. No, it was insane. If I had to, if I had to add a recipe, it would take me like my first website. It would take me like two days just to upload it because I had to try to do the code right. I had to try to do all these things, and it was insane. But I used to think, God, if we could get 500 people on that site, that would be amazing. We had 500 people within three months.

SPEAKER_00

You knew the worth of the website before the website was created.

SPEAKER_01

I knew it was such a needed resource because it's what I wanted. Yeah. Like I knew what I wanted to be out there. And I was like, and I and I I want someone else to do it, but if they won't, I guess I will keep them. And you know, it it it just evolved. Like I knew I knew the name from the beginning was gonna be Cook for Love. Um, I didn't know what it was gonna be, but I knew that that was gonna be my business because that's what it was.

SPEAKER_00

I love that. With this and you bringing up the cooking classes, I remember going to the cooking classes as a kid. So it definitely gets the heartstrings going. But the community has grown to thousands of families who rely on your recipes and advice daily. What have you learned from the PKU community for Cook for Love?

SPEAKER_01

Well, not just the PKU community, it's anyone who is who has a low-protein diet. Um it's this community is so incredible. Um, the Facebook group is the most caring and kind group I've ever seen on social media. Like they are, if someone asks a question and people are there and they're trying to answer and they're, you know, and you know what? Usually their answers are right. Um so I'm so in awe of of them and their kindness. But I think more than anything, I have to thank all of the adults out there who were willing to share their stories with me. And what they taught me was humility. I didn't have a clue what it was like to have an inborn error of metabolism. I only knew one aspect of it. I knew it well, but it was just the diet. I didn't know what it was like to have high levels and still have to function. I didn't know what it was like to have to drink copious amounts of a formula that's not the most delicious thing in the world, and can't imagine taking it when you're not feeling well. Um you still have to do it, you still have to eat. Um the idea that, you know, one day you don't eat enough and your levels spike because you're catabolic, like the complexities of it, and that's just the physical piece. Then there's the piece of just feeling left out, feeling like you have to explain it to people over and over again. And, you know, always having to be prepared. I I could take a day off. I I could cook and I could, you know, I could still go on a vacation. It was a lot of work beforehand, but I could get that break. And I think always remembering I only know one part of this, and and respecting that people make the best choices they can in every situation, and there's there can be no judgment. There can be no, you know, like it's it's everyone is doing the best that they can. And the adults the constant management it has to take a toll. It's the holidays that there's always that extra work and that twinge of sadness and that that you're missing out on something. And the adults have shared that with me. They've told me what's been hard, and I've taken that to educate myself and and try not to do those things to my daughter. Um, and like I said, these adults have taught me no matter how delicious I can make a meal, I can't fix it.

SPEAKER_00

Yeah.

SPEAKER_01

I can't. And that is hard for a parent to let go of. Most of all, after listening and hearing so many things from so many people in the community. The other thing you realize, like most things in life, is there's no one way to do things. Every family is different, and every person dealing with an inborn error of metabolism is different. What works for my family might not work for yours, and that's okay. It's if we all share what has worked for us, it gives people more ideas and more options to figure out what works for them. And I want to be clear: if your kid is one of those kids who's so happy to have Skittles when the rest of the class is having cupcakes, go for it. If your kid wants mac and cheese at the holidays and just wants to hang out and have fun, go for it.

SPEAKER_02

Yeah.

SPEAKER_01

Like you, you don't have to put that pressure on yourself. Um, I don't know how to do it any other way, but it doesn't make it the right way.

SPEAKER_00

Yes, that definitely makes sense. And I love how you said you have taken so much advice from the community themselves, those adults, that has clearly made such an impact. So, Brenda, you have a lot of experience in the kitchen. What advice would you like to share with our listeners? Maybe it's parents trying to cook a recipe that's yours or someone else's, or just um getting one of the easy-to-go meals from Cambrook. Do you have any advice you'd like to share while cooking these meals?

SPEAKER_01

Hmm, that's a that's a tough one. There's so much advice. I I think the first thing that I would tell new parents is to dive in. I I think that, you know, we have a grace period where our kid is just getting formula and it can feel very typical, except that you're weighing it. Um but I think sometimes we avoid getting into that kitchen because it's so overwhelming. And I think that avoidance builds the fear. And what I would say is just go in in the beginning. Open a bottle of wine with your partner and make the cake one night. You know, yes, curse me out for how complex it is and how ridiculous my instructions are.

SPEAKER_02

Yeah.

SPEAKER_01

But you'll see, I think when you taste it, it will give you such a sense of relief that it's going to be delicious. Yes, it's extra work. You're gonna share it with everybody, though. You're not making a low protein and a high protein version. Yeah, everyone is gonna eat that cake, everyone's gonna request that cake at the holidays. That's how good it is. And I think just just making that first step is probably the most important thing I would tell a parent. The other thing I tell them is learn to love your veggies. Um, you know, I volunteer at my clinic and I can't tell you how many parents are like, I don't like vegetables. And I'm like, I don't care. Like, but stop just boiling them. Like, get get get a book. And in in our resources, we have some of my favorite books. Um, but learn how to roast them, learn how to throw a sauce on them, learn how to barbecue them, learn about jackfruit and all these crazy things you never heard of. Um and you know, if you try a vegetarian meal one, two days a week, just to get used to it before it becomes something you have to do, it'll help you get over the fear. Go on a date night with your partner, but go to a culinary school and do a knife class and learn how to cut veggies so the person who's not the primary cook and can still help prep.

SPEAKER_00

Yeah.

SPEAKER_01

There and and you'll have fun, you'll have a few laughs. It's a good date night. And then I think becoming regulars at local restaurants is huge. Yes. Before you have the ask.

SPEAKER_00

Yes.

SPEAKER_01

Not chain restaurants, they can't help you, but your local restaurants, you go there, you let them know you, you tip them well, you be as kind as you can be. Because in time, you're gonna ask them for a favor. And maybe that favor will be hey, if I bring you this mix and I bring you this non-dairy milk, could you make my kid a waffle? Um, and you know what? They're usually happy to do it. Always do it at times when it's a little quieter. Always pay them, even if they insist, no, you brought the food. No, it was extra work on their part to do it and really tip them well, and they will welcome you. My daughter still goes to our diner all the time when she's in town with her friends, and they're like, hey, and they just grab her stuff. They know, they know what to do. So find your community and find those connections so you can still go out to eat. You can still do those things in a way that's still safe for your child and they get something beyond French fries, unless that's what they want. Um, so that's what I would say in terms of parents in the beginning.

SPEAKER_02

Yeah.

SPEAKER_01

And as your kids get a little older, involve them in the cooking. Let them dump the pre-measured little bowl of stuff into the mixer, let them turn on the mixer. Um, let them hear you bragging to grandma on the phone about what an amazing sous chef you have. That you can't believe how good they are in the kitchen. Build their confidence that way. Make it something that's enjoyable. One of my favorite things my daughter said to me, um, because we always do bagels on Sunday, when she was maybe three or four, wasn't she, wasn't I so lucky that I didn't have to go all the way to the store for her bagels? And I could just make them at home. And I was like, I am so lucky. And that's what you want your kid to feel. Like you don't want them to feel like this is an extra, you know, whatever, that this is, aren't we lucky that we can do this, that we can make these things? And I would also say to parents, don't give up on a food. You introduced it once and they didn't like it, don't say, oh, that's it. It is completely a normal part of development to reject a food 20 times before you'll accept it. So put it in the freezer, try it again, pair it with their favorite food, and keep trying. Keep trying. That would be my other thing. And then I would say start educating your kid.

SPEAKER_00

Yeah.

SPEAKER_01

From from day one, we talked about high protein and low protein. We didn't use the word regular because I don't like that. Um, so it was this is high protein, this is not good for you, this is low protein, this is okay. Um, and we were honest with my daughter. We didn't say things like, you know, this is gonna hurt your tummy. We were like, this isn't good for your brain.

SPEAKER_00

Yeah.

SPEAKER_01

Because say if she had gotten it and didn't have a tummy ache afterwards, she might think, okay, this is okay. And we also talked about everyone around us who might have different dietary restrictions. You know, pop pop can't have sugar, it's not good for his diabetes. Granny can't have cheese, it's not good for her heart because her cholesterol is high. So-and-so can't have dairy, it gives them a stomach ache. We built awareness that different people do eat different things. And I think that that's important. And then I'd say involve your child in the choices. Like in my house, we always had three vegetables. Like that we tried to make the vegetables the star of the plate, and then the protein source was a minor thing. Um, and each of my kids got to pick one of the vegetables.

SPEAKER_02

Okay.

SPEAKER_01

Every night. What vegetable do you want? These are what we have. Which one are we making? Um, we we played games on how to eyeball because I knew eventually that's what the, you know, my daughter would do because you're not going to bring a scale everywhere. Um and we would we would have a bowl of broccoli and we would go around the table. Everyone guess how many grams are in this. And whoever won got to pick the movie that night. Um, we we did things where we created a diet board, which I think that you have an image of that you can share with the viewers. Yes. And it was, you know, this is not a yes-no diet. It's complicated. And, you know, this particular one, um, it's it's a dog and it has paw prints going up to it. And there are 28 magnets because my daughter's tolerance was 280 milligrams at the time. And every time she ate, she put a corresponding magnet on the diet board. And, you know, she was able to see, hey, if I want to go out for french fries or if I want to go to the movies and get popcorn, by the age of three, she knew she had to have pasta for her other meal because she saw how it had to balance out. And it was also a great learning tool for grandparents and babysitters.

SPEAKER_02

Yes.

SPEAKER_01

Because it's not a yes-no diet. And well, she had french fries last time. Why can't she have them? Well, because instead she had this for lunch. So it was a great visual. And I think as wonderful as computers can be and as wonderful as iPads can be, to have that physical thing. Yeah, where you're picking it up and you're putting it on for a kid, it clicks differently. And on Cook for Love's Facebook page or a ton of diet boards that parents have made depending on their child's interest. Um, yeah. And it it's a great thing.

SPEAKER_00

Yes. I definitely vouch for that. I know I made my diet board with your daughter at the conference when I was like 10 years old. And I still have it today. Mine wasn't a puppy, mine was butterflies, but it mixed with you and it does teach you. And like you said, it helps kids, but also like you said, it's helping grandparents. So I think that is key. And if any parent on here wants more photos or more information, definitely join the Cook for Love Facebook group if you're not already. There are so many ideas, designs. If your little boy loves trucks or dinosaurs or your daughter loves butterflies or puppies, there are so many ways to incorporate how to learn about how your body works and how your loved one's body works. And Brenda did an amazing job on it. So lots of credit.

SPEAKER_01

And then thank you. And then I think we've we've just touched upon kids, but now let's shift as people get older. Yeah. I think that I think that um, you know, teaching your child independence and teaching your child how to make their formula and teaching them how to cook some meals, it's it's a more important life skill than any ballet class, than any baseball team. Make it a priority and do it before they hit their teens.

SPEAKER_02

Yeah.

SPEAKER_01

Because if they want to find a place to rebel and this is what you're just starting, because you've been afraid to let go of control, then guess what? They just found the most perfect weapon to use. So do it early. Let your fights be about your typical teen things of drinking and other nonsense. Yeah. But but but not the diet, if if you can avoid it. And I would say for adults, there is this cookbook. Again, it's in the resources, and it's called It's America's Test Kitchen. It's just add sauce. Here's what I'm gonna tell you chicken doesn't have a lot of flavor. It depends on how you cook it and what you add to it. It's the same thing with vegetables. So you're cooking two different meals, it's hard, it's complicated. Well, how about if you were using the same sauce and your love, your partner was having chicken picata and you were having cauliflower picata? You you can just change when you look at these books, because they're not certainly not designed for low protein, you you can look at them and say, wow, this red wine sauce on the steak looks great. I could do a grilled portabella and use this same sauce to make things a little bit simpler. And and by the way, always, always spend your time on the vegetables because it's it's good for everybody. And the meat stuff, take the shortcuts, buy the rotisserie chicken, buy the pre made meatballs. They don't need it, they can go out and get it. Um, focus in on you. And and if you're feeling better, everyone will do better. And I know how hard it is to make yourself a priority, but you need to.

SPEAKER_00

Yeah.

SPEAKER_01

For your own health.

SPEAKER_00

Absolutely. You often say you may not love to cook, but sometimes you have to cook for love. What does that phrase mean to you now after all of these years of supporting families with other IEMs that have low protein diets? All right.

SPEAKER_01

So let's let's start with to this day. I do love the challenge of developing a new recipe. Yeah. For some weird reason, I love chopping vegetables. It's like, you know how some people love to color? It just calms them and centers them and makes them present. That's what chopping vegetables does to me. I know that that's not the case with most people. Um so let's let's be clear about that. But that being said, the day in and day out of having to cook is not nearly as exciting.

SPEAKER_00

Yeah.

SPEAKER_01

It's regardless of how you feel about cooking, how you feel about your loved one with a metabolic disorder is clear. You would do anything for them. You would die for that kid. No one's asking you to do that. We're just saying you need to cook for them, even if you don't like it, even if it's not your thing. Because in this situation, there is no greater expression of love. There is no greater act of service, no matter what the age. Because I still do it for my daughter. Um, you know, it's she comes home, we have a special meal. Um, I send her home with stuff because maybe it just makes her day a little bit easier when she gets home from a long day of work to just be able to pop something into the air fryer. There is there is no greater act of service.

SPEAKER_00

That is incredible. I definitely agree with you there. And I'm sure also when there are adults that maybe have kids and they're like, Oh, I'm so excited. Like grandma's hosting Thanksgiving this year. That child who is an adult is still going to their parents' house to eat. So, like it doesn't matter how old you are or what your diet is, it's easier for you that day, too, for that Thanksgiving meal. So that's just how it feels normally. So there is a way to compare there as well.

SPEAKER_01

Yes, absolutely.

SPEAKER_00

So you support people with PKU beyond your website and groups, including helping an adult with PKU who was born before newborn screening. Can you tell us about that experience and why it's so meaningful to you?

SPEAKER_01

Um, well, like I said, like you said, I volunteer at my clinic. I work um with different people with different inborn errors of metabolism, all different ages. Um, it's usually a short-term thing. I might go to their house, um, I might go to their local supermarkets and show them what low-protein foods are available. I might have them over for dinner so that they can taste a low-protein meal. I might host a cooking class for them and their the grandparents at my house. It's always short-term. It's always like, hey, I'll teach you how to make the cake, I'll teach you how to make the bread. They'll come back at various points in their life. But I was asked by the doctor at our clinic if I would be willing to help out an adult who was late diagnosed and who was in a somewhat independent living situation. Um she was married, her husband also had developmental disabilities, but she was in an apartment that had multiple units that belonged to people, adults with disabilities, and there was a kind of a supervisor's who would come in and check on them.

SPEAKER_00

Yeah.

SPEAKER_01

Um, in this particular place, um, which was always odd to me, the the clients were responsible for making their breakfast and lunch. And the house made the dinner for everybody except for this woman.

SPEAKER_00

Oh wow.

SPEAKER_01

Um and her levels were high. Um she was having a harder time focusing, all of these things. And the doctor asked me, Can you just work with her for a month or two? I'm like, sure, no problem. So we started doing weekly cooking sessions. And this this woman is a friend of mine now. I love her. Um she is such a character. Um, and you know, we went from our weekly cooking classes to going out in the community and learning how to order better when she was out with her husband. Um, learning what questions to ask in terms of if you're looking at a menu, we would look at a menu and we'd say, What do you think you can have? Um, what questions should we ask to make sure that there's nothing in here that has protein, all of those sorts of things. And uh I'll tell you a funny story about her, but so so her level started to come down um after I was working with her. And she really started to become much more articulate. And I would come in and she'd be like, Brenda, I have a list of questions for you. And I'm like, Okay. And she was asking me all these wonderful questions. And we started cooking, and she turned to me and she goes, Brenda, I have another question for you. And I'm like, Okay. She's what happens when you die?

SPEAKER_00

Oh, wow.

SPEAKER_01

And I was like, Oh, wow. I'm like, her levels must really have come down.

SPEAKER_00

Yeah.

SPEAKER_01

And you know, she's really thinking about this, and you know, I don't really know what her religious beliefs are. I don't really so I was like, let me do the safe thing. And I'm like, tell me more. And she was me, she goes, What's gonna happen when you die? Are they gonna send me a new cooker? That is not what I thought. Neither did I. And she was so sincere, and I thought I was gonna burst out laughing. And I was like, no, you can't laugh, you can't laugh. And I was like, Well, you know, what do you mean? I'm like, you know, you know that you're 15 years older than me, right? She's like, uh-huh. And I'm like, huh. I was like, yeah, you know what? They're gonna send you a new cooker. She's like, okay, I just wanted to make sure. And I immediately get on the phone with my daughter when the class ends. And uh I tell her the story. And she's like, you know, it's really funny. She's like, I have the same question. And I said, You'll be fine. I'm like, your your father will either marry a new cooker or he'll hire one. You're gonna be all right. I'm like, she's in trouble, but you're gonna be okay. That's so funny. But it's not a the innocence, the innocence and the sweetness of her is just it's it's been over three years. I still see her, you know, I still work with her um all of the time. And it's my favorite thing I do. Like I really like I go there and I I I'm excited. I'm excited to see what she's done and what she's tried. And she's she's wonderful, absolutely wonderful.

SPEAKER_00

That is a fabulous story. I love that. I hope everyone is laughing with us. Parenting a child with PKU also means navigating school, social situations, and emotional challenges. What have you learned about supporting your daughter, not just nutritionally, but emotionally with having an inborn era of metabolism? Is there anything you would have done differently knowing what you know today?

SPEAKER_01

Absolutely. Um, there's there's there are definitely things I would do differently. And I think, listen, I think school age is rough. It's it's countless parties. Um and it's something I don't miss at all. And, you know, from a practical perspective, I've always volunteered to be class parents so I could be in control of what was being served at the parties. Everybody in her class always ate little protein. They had no idea. Um, you know, there were cupcakes in the freezer in case there were unexpected parties. But there's always going to be a time when something doesn't work out the way that you had it planned. And, you know, we did things to try to help in those situations. If we were going to a party, we tried to find out what they were having beforehand and try to have things that were similar because it was important to my daughter. Um, she didn't want to feel different like people were noticing and different. And, you know, we made a promise that we would stick together as a family. So if we went to a party and we brought low-protein brownies and someone made those super cool cupcakes in an ice cream cone and it looked like an ice cream, none of us would have it. Um and when we got home, we would usually make it the next day or two. Um, but again, that being said, you can't fix this as a parent. And if your kid comes home sad from school or a friend's house because they didn't get to join an activity that involved food, you need to just validate her feelings. You need to just make space for that. And I think as a parent, it makes us feel so uncomfortable that we rush to fix. And I think I probably made my daughter not feel heard. And I think I was stuck on the idea that I didn't want her to feel sorry for herself. I I and by fixing it too soon, I think it probably felt like I was minimizing it. And um, it certainly wasn't my intention, but I would say to parents, if your kid's sad, let them be sad. And then ask them what they want to feel better when they're ready. Not saying, well, they had chocolate chip cookies, fine, we'll just make chocolate chip cookies. It's okay. I'll make them right now. It's different than saying, I am so sorry that had to be so hard. I wish it was different. Your diet is really hard and it really does suck. And I definitely didn't do that enough. Um, and you know, um, again, in the list of resources, there's a book that I wish I had gotten when my daughter was young, and it's raising an emotionally intelligent child, and it kind of goes through all of those things and why they were important. Um, I would definitely do that differently.

unknown

Okay.

SPEAKER_00

That was definitely interesting. And it puts a whole new perspective and point of view onto that. So thank you for sharing that because that is a bit more of a vulnerable side, but something for parents and caregivers to consider. So thank you for sharing that. Yeah, of course. Thank you for being here with us today, Brenda, and for giving us a window into your journey with your daughter and the creation of Cook for Love. It's been incredible to hear about your dedication, the problem solving, and the ways your work has connected families across the globe. Your story is a wonderful example of how determination and care can turn a difficult diagnosis into hope and support. You've inspired many of us here today, and you'll continue doing it so in the future. But now it's time for our community questions and conversations. In this segment, we'll ask questions you've submitted, giving us a chance to explore our guest's story from a new and personal perspective. Ready? I'm ready. All right. Our questions here today are from an individual named Sharma. So the first question is: considering your transition to culinary school, what was your first recipe breakthrough that made it feel joyful and normal for both you and your daughter?

SPEAKER_01

That's a really great question. Um, my first recipe breakthrough that was likely the most impactful for my daughter was probably veggie nuggets. Okay, they were something that were a staple in our freezer and something we had at least once a week. And they were potatoes with caramelized onions and roasted garlic and roasted carrots, and they were shaped just like uh a chicken nugget. And we would go out to restaurants and we would ask them to fry them, and we would get nuggets and fries, and it was a quick meal midweek because you just I had a little uh fry daddy, and it was just a quick and easy meal.

SPEAKER_02

Yeah.

SPEAKER_01

So they were an absolute staple. Um, but my most joyful meal when she was young was at graduation from culinary school. So um at my school at graduation, it turned into a restaurant and you had your loved ones come and you made uh, you know, there were different teams and they had, you know, different days, but um we served a four-course meal to our loved ones, and I had adapted it from start to finish for her.

SPEAKER_00

Wow.

SPEAKER_01

And to see her face light up with each dish and to get four different meals and four different presentations, and it it genuinely brought me to tears and re-established that love that I once had for cooking.

SPEAKER_00

That's incredible. That is such a good story, too, because it's like you're completing what you were working on for her. So that's amazing. And for myself, right?

SPEAKER_01

But the resentment went away. It was really it was it was as much for me as it was for her.

SPEAKER_00

Yes.

SPEAKER_01

It wasn't it wasn't a sacrifice at all.

SPEAKER_00

That's amazing. So the second question that Sharma was asking is for parents who are currently in the overwhelming early stage of a newborn diagnosis, what is your biggest piece of advice for shifting away from the initial fear and finding hope in cooking for love?

SPEAKER_01

That's a great question. Um I would say uh the first thing to do is is be part of a community. Meet people that have PKU or whatever other inborn error metabolism you might be dealing with and see that they're okay. Get your fast forward that I wanted. See that things are going to be okay. They're gonna be different. But you know what? You're still when your kid comes home from school, you're still gonna have chocolate chip cookies and and and milk. It's just gonna be a non-dairy milk, and the cookies are gonna have ingredients that you don't understand yet, but you will. Um and I I think again, going back to what we said earlier, we let that fear build as a parent. We're afraid of doing something wrong, we're afraid of doing harm. And that fear stops us from moving forward in the way that we're supposed to. Yeah. And I get it. Even with all of my training, the first time I spoon-fed my daughter, my hand was shaking. I was just like, am I doing this right? And I think we get stuck and we're slow to introduce new foods. We're slow to change the texture because we're just trying to get our legs under us. And for kids developmentally, there's this beautiful window that first year of life. There's this beautiful window from you know, nine to 12 months where the more flavors you're exposed to, the more likely you're to have those foods later on in life. Our kids don't get the stage one, stage two, stage three foods, because by the time they're in two and three, sometimes it's ingredients we can't have. But they need those lumps, they need those textures in order to eventually be able to have the foods that they're going to enjoy later on. And I think sometimes as parents, we're so afraid that we inadvertently create some feeding issues later on. Um, so I would say get over your fear, dive in. It's going to empower you once you take that first step. Like I said earlier, make that cake. Make it a date night. Have a bottle of wine with it. If it's a flop, cry, try again. If it doesn't work after that, reach out to me. Brendacookforlove.org. I can't tell you how many times I've done a Zoom call with a family and made us made something together. We are here. And and I will say that the kitchen is going to empower you more than any other place. And you got this. You're a parent. You'll do whatever you need to do. You just need to make those first steps. And on the days when you don't have it, you have this amazing community.

SPEAKER_00

Yeah.

SPEAKER_01

No one wants to be part of this group. No one wants that phone call. But this is a hell of a community. They are really. I have met some of the most amazing human beings, and I'm so grateful to all of them for all of the stories that they've shared.

SPEAKER_00

Yes.

SPEAKER_01

You got this.

SPEAKER_00

The power of community. Get in the kitchen. Yes. Get there. Put your apron on. But the power of the community is incredible. And the amazing thing too now is we live in a time where there is social media. So you can reach out to individuals and you can see what people are sharing on social media and these Facebook groups, like what Brenda has here, and it'll be in our resources. And you're welcome to join that and ask questions or ask for guidance or anything like that. So definitely encouraging. Thank you so much, Brenda, for sharing that. But that is all for our community conversations today. If you would like to include a question in the future, keep an eye out on my social posts and I'll regularly ask for input on our community questions. As we wrap up today's episode, remember that you can find helpful resources as well as important information that Brenda has shared with us in this episode in the show notes below. Thank you for listening and we'll see you next time. Thank you so much, Brenda.

SPEAKER_01

Thank you, Meredith.

SPEAKER_00

That is it for today's episode of Metabolically Speaking. Rare conditions, real stories, and a reminder that life with a metabolic condition is about living, not limits. If today's episode resonated with you, share it with someone who might need to hear it. And if you have a moment, leave us a review. It helps others find their way here too. We'd love to hear from you. If you have feedback, a story to share, or a question, send us an email. You'll find the email address in the show notes below. Make sure to subscribe to Metabolically Speaking on your favorite podcast platform and tune in each month to join your tribe. Breaking barriers and living without limits. Thanks for being here, and we'll see you next time.