
When life doesn’t go as planned, how do you keep going — and still find joy along the way? In this moving conversation, pediatrician, rare disease advocate, and author Dr. Tasha Faruki joins me to share her extraordinary journey as a mother...
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Foreign this is Danielle Ireland and you are catching another episode of don't cut your own bangs. I am so glad that you are here because this episode that you're about to listen to I think is top tier, top 10 of anything I would have hoped to offer in creating a podcast. This interview delivers my hope and my goal. My renewed mission with this podcast was to make big feelings less scary and approachable. Knowing how to interpret them and how to let them inform your life feel possible. And that is what we accomplish in this episode. And I don't mean accomplish as in you're going to listen to this and never have any doubts again. The nuance, the complexity, the humanity, the hope, the joy that you would hope to feel in wanting to learn how to make more space for your emotions and let them inform your life. This episode is the one you're going to want to save. So welcome Dr. Tasha Faruki. She is a pediatrician, a rare disease advocate, speaker, author, and the forthcoming memoir that she's coming out with is called Keep youp Head up. It's releasing September 16th. All of the proceeds of this beautiful book that you are going to want to buy. All of the proceeds of this book go to children's organizations that help children and families, like Make a Wish foundation, like the pediatric wing in Cincinnati where Dr. Tasha Fruke is from, and also many other organizations too, that she you know, they're varying in size, large and small, but all of the proceeds, you can be assured, are going to a place that is actually being of service. And this book is in service of you, whether you are a child of someone navigating the complex medical system or you're just a human being on the planet who has been knocked around by life. I teared up preparing for this interview and I cried three times in this interview. So you might want to just grab a box of tissues because it's just Beautiful. It's beautiful in so many ways. Another look at humanity to know that you're not alone. What we cover in this episode is as much as I could ever hope for. The complexity, the beauty, the challenge, the unpredictability. And then the power and shift that comes with getting curious and asking yourself, how do I figure this out? What if this didn't have to be the end? What if this is the end of something that I thought my life was going to be? But what if I let myself become open to the possibility of what my life is now? That's what we talk about in this episode. And it's beautiful. It stands on its own. I don't want to sell you on it because you're already here. So just get ready. Without further ado, sit back and relax and enjoy. Because you will. Dr. Tasha Farouki When I set out to write a book, I only knew two things. One was I wanted to make big feelings feel less scary and more approachable. And I wanted to bring some lightness to the feelings themselves. What I know to be true as a therapist is that emotions are energy in motion. They have information to tell you to inform the next right step to take. And self doubt, fear, anxiety, live in that space between knowing and not knowing. The second thing I knew was that I wanted to have fun in the process of making this thing. The result is this. Wrestling a walrus for little people with big feelings. Beautifully illustrated children's book that has a glossary at the end for some of the bigger feeling words. What this story does in a light and loving way is create context for those relationships you can't change. Those people that you wish would treat you different. The things in life that we cannot control and yet we face that are hard. This book, it's a conversation starter for any littles in your life who want to create more safety and love and patience for some of those experiences. So hop on over to the Show Notes. You can pick it up@Amazon.com varginnople.com or my website. I hope that you do because I believe in this little book. I freaking love this little book and I cannot wait to hear your experience with it. Thanks so much for listening. And back to the episode. Excellent. Well, Dr. Tasha Faruqui, welcome to Don't Cut yout Own Bangs. It is a true, true honor to have you here. Your work as a pediatrician and your life as a mother of three. The your heart space and your headspace, your professional role and your most intimate role at home came together in a way that you couldn't have seen coming. And I would just love to open it up to hear you speak a little about that before I kind of needle in on my questions, because that, that's a really powerful. That's a powerful journey and you're sharing it so openly.
C
Thank you. I think the first place to start is just acknowledging that it's a journey. I think that, you know, now that I am more public about our story and our family, and really when I started sharing is when Soraya started palliative care and hospice. But prior to that, there was a story, and prior to that, there was a vision and there was a plan, and everything shifted along the way. And so not to say one experience is better than the other, but coming into the world, we didn't know that Soraya would have any medical challenges. And when we first realized that she was having feeding difficulties as an infant, that's what spurred a whole medical workup. And then it was delayed milestones. And just from being a pediatrician in training, there is a moment of trying to figure out all the potential diagnosis and kind of being in that mindset of what does she have? And as a parent, this is just my experience, but I know that when I have been pregnant with each of my children, I create a plan. And it's not like a gender. It is literally visions of what they're life will be like. And it's done subconsciously. And I had done that with Soraya. And so not only does my child have medical needs of some sort in those early moments, but the child that I had expected is not the child that I will have in front of me. And so I look at my journey as actually like multiple stops. And so first stop is I have a child that is not what I expected. Second is I have a child that has a medical diagnosis that either is curable or not. And then the next part is, okay, I will never figure this out. And trying to accept that I may never know what disease Soraya has, and trying to rewrite a history in a path of what will this child's life look like? Because after a lot of work up in her first three years, we found, okay, she doesn't have a diagnosis. And there's nothing that tells me that her life will be limited. So where I'm in this moment, now that Soraya has a life limiting diagnosis, this has not been what the plan was even 10 years ago.
B
It just changed and evolved. I would love to, if, with your permission, to go back to the moment you touched on you're up a mother. Soraya is your second. You have a. You have a toddler at the time. And then Soraya is an infant, and you're having feeding challenges. There's something so visceral about my body remembering that time. I'm a mother of two. I've had three pregnancies, and I have two children. And the experience with both, in terms of feeding, nursing, both dramatically different. What I was remembering was, you are just staring at their face like, this close for hours and hours and hours. And there is this filtering, interpreting, observing, storytelling, this relationship between. It's probably nothing. Don't make it something. You're reading too much into it. Don't WebMD. Now, granted, for you, it's very different because you are an actual. That you're an actual doctor. But, like, don't WebMD everything. Google is not your healthcare provider. You're reading. You're almost minimizing the observation and then inflating just that, that relationship between trusting yourself. Something. Something is off, something is amiss here. And then also just all of the emotional poles between what I would imagine, what your head was telling you, what your expertise and what your degrees were telling you. And also, you come from a medical family. Your father was a doctor, correct? Or is a doctor. Yeah. So can you take me back to that moment when you're first having those inklings, those whispers of, huh, this. And is it different because she's different than my first daughter was, or is this different?
C
Thank you for acknowledging that. I think that it is a lot of little layers in that time of our life. My first inkling, honestly, was even at the OB GYN when the dates were a little bit off in the sense that she was measuring about a week smaller on the first ultrasound or a week behind. Okay. And I am married to a physician, and we had Soraya my first year out of residency. And if there's one thing that I'd like to think that our doctors like to do is plan. And I felt very strongly that the dates were off. And I remember my ob GYN telling me, this happens all the time. You're off, you don't have your dates. Right. I'm like, why would she be measuring smaller? And in earlier ultrasounds, those are more accurate than later ultrasounds. And so being in the background of medicine, I knew that, but that may not be common knowledge where later on in the pregnancy, you can be off on dates, and it doesn't necessarily flag you to be alarmed. So I already had almost like a little inkling in that moment, but talked myself out of it.
B
Oh, okay.
C
Maybe I'm off and. Okay, well, everything else is going okay. Towards the end of the pregnancy, she was measuring small again. I just felt like something's not right. Don't freak out. You're overanalyzing it. This is the medical part of your brain that is just thinking that the worst is going to happen. When she was born, she wasn't moving the right side of her body and got whisked away to the nicu, which, again, as a medical profession, they knew that that was not right.
B
Yeah.
C
And she was born with what they call sga, which is small for gestational age. So she weighed much less than my first. That medical background told me that's not right because typically in subsequent pregnancies, your child actually gains a little weight because the uterus gets stretched. Oh. And so I remember. So, you know, first when she got whisked away the nicu, there's already, like, this fear. Like, that joyous moment had already been robbed. Like, and that's for anybody. I'd like to think and see my strength. Like, as soon as the plan goes different than you expect, everything is just crumbled. So in that moment, I knew something was wrong. Your child gets whisked away and everything changes. When she got brought back to me now I'm a recent grad from residency. I'm in my first year of practice as, like, a full fledged pediatrician. And the pediatrician comes to my room and I am questioning the weight. What happened in the nicu? And it was like, oh, she wasn't moving the right side of her body. But then everything else is now moving. Everything's fine. No interventions were needed. And, like, what about her small size? And the response was, you're petite. Your husband's petite. I'm sure it's genetics. I just let it be because I felt like I was already feeling challenged.
B
Yeah.
C
And when I put her to breast in those first hours.
B
Yeah.
C
I felt like she really fatigued, like, really easy. And then you're like, second guessing. I'm like, my toddler's a toddler now. And this, like, sleepy newborn is this like, you're like, trying to compare. And again, the pediatrician's like, you're a pediatrician. And so now we're like colleagues right now. It's like, you know that they're sleepy at first. And I'm like, okay. So, like, you're constantly second guessing yourself. You're constantly getting reassured. And again, to be fair, in the role of A pediatrician, I would say about 90% of what we do is reassurance.
B
Yeah, that, that is. I've never heard that before, but that feels so profoundly true.
C
So while you say if a non medical person might be like webmding, I'm literally going through my own search. But it's a medical search and it doesn't mean that one's more valid or not because I'm still second guessing. Just like the parent with not a medical background is second guessing what's real, what's not. Am I overthinking? So all of those thoughts were still going on.
B
Well, and also I want to, just for the sake of the story and what you were actually experiencing putting your daughter to breast on the medical table, you also had a gaping wound the size of a dinner plate in your body. You were raw in that moment. You were raw and you had just delivered your second baby. It's just, I say that more so I think because we hear so often about women giving birth and women being pregnant, like it is just a part of life. That's how we all came to be. There's two topics I think more than any other in my work as a therapist that I think just sometimes need to get more, more due in terms of what the experience is. And divorce and childbirth, I think because they're common, they get just wish, yeah, okay, you just had a baby and then what happened, Tasha? And you're like, you just had a baby and then these feelings, these senses are already starting to come to you, I would imagine there's so much reassuring.
C
That'S done, so much reassuring. And sure. Like you're carrying whatever experiences you've had in your previous pregnancy. And you know, I will say with having my oldest during my residency, there were already layers of the new mom as far as figuring out breastfeeding. I had postpartum depression. I had these other fears that would happen with Soraya, where now Soraya is presenting me with something different. And so that was the other thing. You just assume that the pregnancies and the experiences will be similar. And while she was feeding, I felt like she made like a weird noise. So now we're moving on to the second week of life. And so now I'm at my general pediatrician's office and they said, you know, I mentioned this in the hospital that she was like a little extra sleepy. And now I feel like she makes a weird noise when she feeds. And the pediatrician who again, this is like where like rank comes into play in the world of medicine. There's like med student, there's resident, there's attending. And so she's been in the business much longer and I am like fresh out. Right. And so it was one of those types of approaches. If I referred you right now to a specialist, they would laugh at you and they would laugh at me. This baby is fine. You've breastfed before. Yes. So this was the reassurance that I was getting.
B
But that's ego.
C
I don't know. It wasn't even in the place to.
B
Really I, I Goodness. And I would Im the layers of being in the field and being the one receiving the care that. What? Layers upon layers upon layers upon layers. Okay. But if I send you, they're going to laugh at me.
C
And I think this is, I really appreciate like going through this journey because I think that so many times I could literally just focus on end of life care. Like we could just talk about that.
B
Sure.
C
But this journey is so important because there are elements that I think are universally relatable as a parent person.
B
I think what makes your story and we're going to get to those things. But I think what you're so generously offering by sharing these elements of your story is through your specificity. The learnings are universal. Doubting yourself, having a sense. Because my biggest hope with the show is to help make big feelings feel less scary and more approachable. And then how interpreting what that emotional information is telling you in order to make the next right step for you. That is the hope. And so I really want to spend some time along the way of. So you were at this fork in the road. You were at that fork in the road. What did that feel like? How did you get here? Because there have been so many, I would imagine big chapters that could take that could be their own story there. You probably are going to write multiple books. But. But yes. So thank you for letting me create these pauses because it's profound.
C
And I think even going back through, there's elements of things that I that are like new elements and there's new facets that I am like, what is that about? And how can we do better? And I say we because I am also a medical professional. So as much as I can be angry at this person telling me, you know, they would laugh at you, I am also part of that system. That person is my colleague. And so my point in sharing is not to throw any professional under the bus that this is a systemic issue, this isn't a professional issue. By sharing these flaws, it can only help us do better by acknowledging that they exist. I also feel that people may have a perception of, oh, she's a doctor. So clearly she was able to get to what she needed to do either quicker or better or didn't experience these types of things because she's in the medical field. And I think being in medicine has its own challenges and obviously privileges as far as like navigating the health system, understanding the terminology. But there are still some challenges. And one of these again was here's this person that has been practicing way longer than me. I literally was a recent grad and I am going to just trust her versus trust that something else was going on. Fast forward. So now I say, okay, like I literally, I quiet. I quiet. Next appointment. We go to the two month appointment now. And at this point I am needing to get back to work full time. As a pediatrician. I had a government position with an organization called National Health Service Corps which is doing underserved medicine. And the reason why I put that up is there was zero option for me to go part time. I had made this government commitment that I would serve my country in this way and I'd be working full time in an underserved area. I need to get back to work and two month appointment. I am telling my pediatrician I cannot get Saria to take a bottle. Like I am trying. It's almost like she can't take it. Like jokes, she gags, like the coordination is off. And the pediatrician tells me, like, you breastfed with your first. You're just really good at it now. You're so good at it. Your baby will not starve themselves. Like they will do fine where they're in daycare.
B
Yeah. Yes.
C
So now I'm like, okay, so I'm totally stressing out about will she take a bottle at daycare? My toddler's in the same daycare. So like that gives me some comfort. Like they'll be together. Fast forward, I'm back at work when Sariah's in her 10 hour daycare days. She is force fed one ounce in that 10 hours and I am nursing her throughout the night, not sleeping, trying to keep up. And I'm like, this is normal. This is just how this is going to be.
B
I just. Okay, so. And just for timeline's sake, this is roughly 10 weeks post delivery.
C
This is now. I'm back to work by the three months mark.
B
Okay, so I. Oh, so 12. Okay, 12. Yeah, yeah.
C
You know, we just don't sleep and we're going to do this because this is what motherhood is. Right. Because there is societal pressure. So there is. And I'm also on the other side of that, giving advice. Right. Helping other mothers, like do this.
B
Chills. Hold on. Wait, I need a minute. Yeah. So I'm on the other side giving advice. That feeling a little misty. Just in a sec. Not that I. I'm not trying to fight tears for this. I have no problem with tears. But there's more. We have much more to get to. There's something that you've spoken to your experience as a mother and a parent and as a pediatrician. But though that is a unique experience that not many of us share, there is this element when I'm working with clients who are really wrestling with shame. Like this sense of I should have known better, I should have seen it, I should have known that particularly I have a lot of clients who define themselves by their intellect and their. I was too smart to let myself get hit or smacked. And the way that we imagine ourselves to be and then the messiness, the ill defined getting tossed aroundness of also being a human being. I appreciate so much that you are opening yourself up to reveal that part of your story. Because what that does, in my opinion, and what it's doing for me right now in real time is just washing over that tender residual shame that knowing if knowing could guarantee an emotional outcome. If knowing if I have all the facts, I won't have to feel uncomfortable, right? I'll never have to. I can just think my way ahead of a problem. Beat a problem to the punch. My calendar and my timeline can prevent me from feeling any discomfort like you're offering. It's such a gift, what you're giving us all by sharing that part of your story. And I can just also feel how compounded those layers are in your story. But I just, I should have known better. Like that is. That's like the slogan of shame.
C
Yes. And luckily I have a wonderful therapist gonna put that out there. But at this point I did not.
B
So.
C
So, not that I had a bad therapist. It just wasn't in therapy. So from three months to four months, I'm just just cruising along and just convincing myself that this is normal. Because I had that two month appointment. The next appointment after that is a four month appointment routine. Well, child visit. And at this time, we are really noticing that Soraya is not making it on the growth curve. So now we have what we officially call failure to thrive, which just means like not making it on the growth curve. But that word, those words, that diagnosis Definitely have a certain feeling connotation attached just with. Even in my medical training, how many babies we would need to admit to the hospital if they weren't being fed properly due, you know, either due to neglect or some mothers who are really set on breastfeeding but maybe do not have the supply and just refuse to give formula. Whatever the situation, this is all non judgmental, but it is attached to all of my feelings that come with the diagnosis. With that diagnosis, the pediatrician says, I think we need to start solid food. You're just not giving your baby enough calories. And you talk about shame. And I think that what I felt in that moment, no matter what we talk about, like, can you fact your way out of this? I couldn't. Like, I, I couldn't because as a mother, when you look at your child on a graph or like a report card and you see that they're failing, failure to thrive, it directly feels like it's a reflection of something that you're.
B
Doing well and it's also you. Every parent wants their children to thrive. That's terrible language. That's. That's the worst. Failure to thrive.
C
Oh, that should be our next movement. I actually never thought of that. As far as, like the semantics and the words that it's up.
B
Yeah, it's real up. It's almost like we need to just have f. Failure to thrive. Like f. That noise.
C
Yes. That's a different podcast and we need to explore that. I'm. I. Yes. I've actually, you know, it already brings up feelings for me prior to having Soraya. So I, I wonder, I wonder how much better we could do if we change those semantics because there is an attachment to it. And anytime your child is called a failure in any capacity, like, there's a moment of what?
B
And it's. Oh, there's. If I continue down this rabbit hole, we won't get to all the other beautiful things. But probably happy to help you support that because that makes me angry and angry. Some anger, sometimes a good rocket fuel sometimes. So for sure, for sure. But please continue.
C
Yes. So I think in that moment of what you may have identified as shame, embarrassment, like my child is failure to thrive. And now this pediatrician is telling me to give the baby solid food. So there's a couple of thoughts here. One is, my training tells me that if a child doesn't have the head control or the strength to really be able to have solid food, that maybe that's not the right time. I also know that four months, you can give a Baby solid food. And despite me realizing that, I felt like her tone was off to begin with, but that also wasn't really acknowledged. I really didn't want to give her food. But I think because I was labeled with this failure to thrive child that I surrendered. And so there was a part of me that was like, yes, whatever you want me to do, I will do. Like, clearly I'm doing something wrong, so tell me what to do. And so we had started with baby oatmeal. And I don't know what compelled me to do this, but I recorded it. And I think that I just like, knew in my gut that it wasn't going to go well, but I also felt forced due to all these feelings. And when she was eating, she made this awful sound. And it was like the sounds that she was making at that two week appointment, but amplified. It was so much louder. And it was the sound that went.
B
She was gasping.
C
Yes. And that sound medically is known as stridor. So if anybody's had a child that has had croup and when they cough, they make that noise. It's literally that sound. And you could see her sweet face sweating. Something was totally not right. I recorded it. And that was my breaking point. It was my breaking point in knowing one. Okay, I know for sure something is really wrong. And I am done having anyone tell me what to do.
B
It's. It's not just in your head. You video record it or write it in a journal. You created evidence for yourself because you're sleep deprived, you're burnt out, maybe depressed for all of the factors that were you were navigating in your life at that moment in time. You created a time capsule. You created some evidence for yourself that you're like, this is not just me. I'm not being dramatic. I'm not inflating, I'm not reading too much into this. This is. There's proof.
C
There's proof. And I did it. I did it where I just became an advocate and I actually sent this video to the pediatrician and I said I would like a swallow study. I didn't ask, I just said, this is what I want. And a swallow study again, would be something that I would need to know from a medical background that we could actually. It's an actual tests that you do with radiology and you actually watch a child swallow and chew while you're taking images to kind of see where is this food going? What is happening? In my mind I was thinking like, maybe there's something anatomical like that her Trachea, her esophagus is structured. That is going on. And so I'm actually hoping for that because that could be fixed. And so I am, I am going for that. But my request at that point was, I don't even need to tell you what I'm thinking. I need you to order the test. And so she did. By the time the test got done was a month later. So now Sariah's five months age. And so, you know, you're just hanging out in this unknown of like, why is she sweating with feeds? Why is she making that sound? And you just keep going. And in that swallow study, it was found that she was aspirating, which means that when she was drinking or eating, it was actually going into her lungs. That's a big one. And so thank you for taking a breath there. And the radiologist actually pulled us aside. This is actually not very common to do in the sense of many times these tests are done, you get a result in your, my chart or whatever and somebody else will talk to you. But I do think that there was this moment of, oh, wow, these two people are physicians. And so there was this like extra layer of let me pull you aside. And I remember the radiologist telling us, your life will never be the same. And I remember feeling the same way where my husband like didn't quite understand. So he's in medicine, but he's an adult and surgeon orthopedic. And it's just a very different mindset. I think just being a surgeon is a different mindset. And I think for him, he didn't quite get it. But for me, I could understand this gray area of this child is going to have a lot of needs. This, like whatever it is, whether it's surgery, whether it's therapies for feeding, like, this is going to be a long road. And that's exactly what this radiologist was sharing with us. With this information. It went from the pediatrician not being concerned at all to being everything is really urgent. Now listen, you have a child that is low tone, which I had already thought aspirating, feeding difficulties, not gaining weight. You plug that into a differential diagnosis of what could it be? It could be all of these awful things. And so this is where things shift in the sense that now she's talking to me like a colleague and she goes, you know what? I think she has sma, which is spinal muscular atrophy and type one, which happens in infancy. Child at that time there was no treatment. Baby dies within a year to two years. And so now we're having this like kind of non emotional conversation where she's. Oh my gosh, that's what it is. And it just wasn't handled tenderly. It wasn't apparent. It was handled as like a. Oh.
B
I, I figured it out.
C
Right.
B
Which of course was not the case. I want to just. There was something about when you were describing Soraya eating at four months old and then having the confirmation of what she was actually experiencing. I feel just overcome with this sense of awe for her. What a warrior. Aspirating every time she was being fed.
C
Yes.
B
What a little warrior like that is.
C
Death. Yes. And if you ever get the chance to meet her, you will feel the same because that is the theme of her life. And in this time for her, it.
B
Also makes her motto, which I'm going to skip ahead. We were going to talk about it, but suck the joy out of life. I mean, she was getting somehow whatever she needed to sustain in those first four months and the air she needed.
C
Dang.
B
What a little warrior.
C
Yes, yes.
B
I mean, now she's 13. I probably should be calling her little, but I was imagining four month old her.
C
Yes, exactly. Yeah, exactly.
B
Yeah.
C
So from there, now we're on a. Remember it was a Friday when we had the appointment where we reviewed the results and next steps. And the pediatrician is almost getting excited for lack of a better emotion of, oh my gosh, like, we need to get going. There was a stat. So now we went from like, don't worry about it, stat consult. We need you to get an MRI like within the next 24 hours. I need you to see a neurologist. I'm going to also refer you to genetics. I'm going to also refer you to pediatric medicine and rehab to teach her how to feed. And we needed to do this right away. And then I left that appointment knowing that I was meeting with a neurologist on a Saturday morning. And I just knew this is all bad. And I remember going home and just crying in the closet. Want to express to my husband all of the different feelings because it's almost like you also don't want to manifest something that isn't there. So you like convince yourself that if I think this or if I say this out loud, I will make something bad happen. So I remember just hiding out in the closet, being like, what is happening? Everything's falling apart. Is she going to die? This is awful. My husband doesn't even realize what SMA like truly is. And I was just beside myself. And then the next day we Go to see the neurologist. And this was like my first exposure to realizing how much people in these moments have to hang on or look forward to what a subspecialist will say. I felt like whatever's happening tomorrow is going to change my life. While it did, it didn't. Right. So the neurologist saw her and did the imaging, did his exam, and he's okay. She does not have sma. I feel very confident. We still need to do a lot of testing, but that's not what this is. So then I'm like, okay, great. There's like this, like instant relief. But there's also. But then what? In these. There's a full workup. This is going to be a long road. And so now, again, redefining that, that path. I didn't mention that we were living in Virginia at the time because my husband was serving in the Navy and he had his orders to go to Afghanistan. This was, see, late September and he was slated to leave in January. And so there is just layers. So for anybody serving in the military that's listening, thank you for your service. And I see you because I was trying to figure out how I was going to care for my toddler, how I was going to care for a child that's going to have some needs and doing that solo while working full time where there was no ability for me to work part time while we're in a state in an area where we don't have family or friends. And so all of those layers were compounding.
B
Yeah.
C
And we. What I will say is the medical team really supported us in expediting as fast as they could getting us into multiple subspecialties. And so the next stop was gi. Due to the fact that this failure to thrive, we went to that appointment and I. I oftentimes bring this example up. Cause I think it's important in how we communicate with families. But I remember the medical student coming in first, which is very common. I'm very much into the process of teaching. But the medical student said to me, how do you find? How do you feel about psori getting a G tube? And I just was not prepared like I was. I had just been going through this, like, spending of what does she have? Is she going to live? And then I thought I was there for, like, calories. I had not even thought about next steps for intervention to get her to gain weight quicker. And that's again, where, yeah, as a doctor, obviously you should have. But I was. I was Mom. Oh, yeah. And yeah, I was Just so upset. I was just. Just remember sobbing, being like, why is this medical student telling me this? And I was by myself know that this was going to be like a big appointment, right? Like, I. Which appointments are going to be life changing or which ones are going to be informative? Like, I was just by myself holding this sweet baby and being like, what? And then I convinced myself while I was waiting for the GI doctor that the medical student doesn't know what they're talking about, that they just had a turn. Sure enough, we started talking about a G tube. Like, when do you want to get the surgery scheduled? We can put an NG tube in now week. And I just, I was just totally taken back. And I remember saying, okay, my husband's getting deployed in January. Can we just do this as quick as possible? But I haven't talked to him. Yes, I consent and I need it quick, but I don't want it today. And I got through the appointment, but I also vividly remember crying in that office for another additional hour where Mary, his nurse, just came and just helped me, helps Raya. And I remember going home that night and having to tell my husband this, this whole story. It was Halloween night and I said, okay, you need to suck it in. You need to take my oldest trick or treating.
B
I was thinking about. I was thinking about your oldest, actually.
C
And so I was like, fake it till you make it. We'll cry when she goes to bed. And that's essentially what happened in that. That week. It's just like. It kind of just set off this, this whole other part of our life of a medical odyssey of seeing the geneticist, seeing everybody and getting ready for G tube.
B
And the other element of you. And you spoke to this a little bit at the beginning of. I'm really good at making a plan. I've built my life on these plans. And this element of Soraya's health journey is very much seeking a plan, seeking an outcome. And almost like sand, it just kind of like slips through the fingers. Okay, no, it's not this. It's. Well, no, I wasn't ready for this. That's not the outcome I was prepared for. Just over and over and over. And I was told this once, between my first miscarriage and my. My pregnancy with my daughter, that our children carry the medicine we need. Like the way they come through and what they hold in their little essence, it gives us the medicine they need. And what a profound teacher she is in surrendering the outcome, to surrender the outcome.
C
That is the motto of my life. And it's taken so long to get there.
B
Yes, yes.
C
And I am still learning this word. Surrender is something that is so hard to do over and over again. And I also want to say I'm so sorry for your loss because I think so many times we brush over a miscarriage and we don't take the moment to actually acknowledge what a profound loss that is.
B
Thank you. I. In a similar way to failure to thrive, there's this sense of, well, I didn't like miscarry. Makes me think that I, like, dropped and dropped an egg on the way to the skillet. It's like, can we laugh and cry?
C
Yes, we can laugh and cry.
B
Yeah, exactly. Exactly. It's like, no, that's like. But yeah. So I. I really don't like that language either, but for lack of a better, A better way to describe it, I really appreciate you making space for that. Thank you. I. There is something. There's some language that you. Because I love language. There's something that I had quoted that I'd like to read to you and then have you speak to it, if you're open to it, that science doesn't always have the answers. And there are some issues in life that simply cannot be fixed. Yet we continue to find happy moments and celebrate beauty. The beauty of what we have that seemed to, I think, bookend this, the head and the heart for me. And I love that you also said that this is an ongoing. This is a. I'm still learning this. I'm still coming into new expressions of this, but I'd love to hear you speak to that a little bit more of what it's like to be in a grounded medical, double blind, meta analysis, medical journal world, and then also live in this world that feels liminal and loose and very much heart and spirit driven. And.
C
That is hard to summarize in words.
B
Fair. Fair.
C
However, it's been recent. So again, Zariah is 13. I don't think that I would ever be able to express myself or our joy in that way until about three years ago. And so that is something to just point out that again, at the point of me sharing our story and sharing our joy and how we do this thing called life, we have not always been doing that. And I think that's really important to acknowledge that I've been in survival mode. I've been in survival mode for the majority of her life. And I have been under this thought, life, making up a word. I don't know if that's a thing where. Yes. Where. If I Just get through it. I will get there. Where is there? I don't know where is through? There is no through. You just, you're. You're just in it, and you just continue to follow the ebbs and flows. And prior to this shift in how we look at things, and I can, I can tell you what brought upon that shift. There was a little bit of a shift of learning to accept that Soraya may never have a diagnosis. So that was an actual turning point. And that turning point came when we had ruled out everything that could be life limiting, and she just didn't fit anything. And so really trying to accept the gray, accepting the gray doesn't mean that I'm accepting Joy, though. That is just acknowledging that science has a limitation and I'm going to stop using up energy in a way that is not going to benefit not only her, but our family. And there was a point where we had tunnel vision where nothing else mattered. And I say this with regret in the sense that these siblings of children with medical complexity or medical acuity sometimes get lost along the way. And I will say that in my mind, in that time, we had such tunnel vision that if we can just figure out Sariah and what she has, we can get back to the life we planned. And that was really the first three years of her life. As soon as we took a step back saying, okay, we're not. We're not going to get there. There's acceptance. But acceptance is still not again coexisting with Joy. As far as when that shift happened in how the quote that you're. You're mentioning actually kind of came to be was unexpected in the sense that it was when she entered into palliative care and hospice. That to me was a true feeling of surrender. Okay, I have no control. I have no control in what is going to happen. My medical skills, my resources, my finances, my anger, my passion, none of it. And enter. Make a wish. I'm like, great. Make a wish is going to give me a trip. Wrong. They're going to change my life. And it's not just for Soraya. It was for the whole family. And it was completely unexpected.
B
Yeah.
C
Soraya said she wanted to go to Hawaii, and that was right when she started on her ventilator. She has a G tube, a ventilator, a glucose monitor. We had never gotten on a plane with her.
B
And she wanted to surf, right?
C
She wanted to surf.
B
Yeah.
C
I will just say that if she ever said that to me, I would never be like, I would never agree to it. And so here she was telling Make a Wish this. And I was so scared. I was like, I don't know how they're gonna do this, but you know they're gonna make the magic happen. Great. Let's make her dreams come true. What had happened on that trip was the realization that they do make things happen, and there are ways to do things that have never been done before. And there's a way to meet her where she's at. And as soon as that restriction of logistics and stress of the planning and the prep was taken off of my shoulders, we had so much fun, all of us, the way.
B
And I don't have the right words to articulate it, but the experience of listening to you and feeling your words land on me. What? The way you're describing being held by the Make A Wish foundation feels so similar to way that nurse held you in that office. Like being seen and being held. Ah. I didn't anticipate crying so much. And also, this leads me to something I actually do want to talk to you about, which is watching other people experience the impact of your journey. And what in terms of, like, empathy, fatigue, Just having to bear witness to people experiencing a journey that you are lived and many people are probably playing catch up to. I just want to. And I don't know if that's really even a question. I just want to acknowledge that you're. That's probably also an additional five pounds on that pack that you carry. Moving through life is sort of waiting for people to experience their own feelings while you're waiting to get to. Okay, yeah, that was a part of my story. Yeah. 10 years ago. That. Yeah. And then, like, wait, wait. This is the first I'm hearing of this. Thank you, I guess is maybe a better thing to say, is thank you, but please take me back. So your Make a wish is saying, okay, we're gonna figure this out. We're gonna do something that's never been done. We're gonna make the impossible possible or the seemingly impossible possible.
C
Well, I will say I don't feel like they even hesitated. I think all of those words of hesitations were inner. They were my own. They never said there was nothing impossible. I had created these boundaries on her because she had special needs. I had created these restrictions. How can she go on a plane with a ventilator? None of these things were ever told to me. These were beliefs that I carried that were getting in the way.
B
Yeah.
C
Make a Wish just said they were going to do it, and I was skeptical the whole time. I was like, okay, sure, this is going to be amazing.
B
Okay.
C
And when we got there, it was pure magic. And while, yes, it's wonderful to be in this beautiful space of Hawaii, it taught all of us. What if just took away these restrictions that we created in our mind? What if we all made a list of what we wanted to do? What if we control what we can control? And let's make these memories happen, even though alongside her health is changing and things are getting worse.
B
Yeah.
C
And so it was that trip that our motto of suck the joy out of life came to be. Because suck is such like a strong, aggressive word. But that's like how we really feel about it. Like, you have to actually seek it. I think that we were just waiting for things to get better. We were waiting for joy to just fall into our lap and we were getting really burnt out and sad that nothing was going our way. And so really, if we could be intentional about finding it in the ways that we can control. Granted, we know we can't go to Hawaii every other month, but these bucket list items have been, you know, anywhere from trips or concerts to putting your toe in the ocean once a year, having s' mores by a campfire, being in the woods once a year as a family, dancing together. Sometimes it's just a food item, sometimes it's just going to dinner together. And we've had to change what that looks based on Soraya's health. And so that is where that quote comes from in the sense of we had to surrender finding an answer. We had to surrender trying to save her, and we had to also live. I also think that when you're in this, it's almost like you're living parallel lives and at some point you have to allow all of it to be one. And they did the same with my identity as a physician or my identity as a mother. There's a saying of put your mom hat on, put your doctor hat on. And just recently, I've realized I don't have any hats. I am all one. I can't actually break myself apart. And the sooner I let that blend, the better my perspective and my ability to cope.
B
There's another element to the shift that happened that you invited in by saying yes to Hawaii, yes to getting your kids on a surfboard, like you said, yes. But there's this shift to maybe not exactly curiosity, although it could be, but possibility. Like, there are questions in terms of emotionally processing. There are questions that either ill timed or ill placed can really deplete and drain. Like why? Why did this happen to me? Why can't I figure this out? Terrible. That's corrosive. That's a downward spiral so fast. But how? And what, like, what if we did this? How could that work? What would that look like? How would it feel? Those questions, those types of questions can help you access something new where. Not that why is never a good question, but when it is placed like before, when it's placed in the front, it's such a recipe for spiraling and shame and feeling depleted. But maybe why not?
C
Yes, actually we actually have said that. Like, why not? I think that is important. I will also say that for all humans listening, we did that. We spiraled a lot in the why us? The anger, the rage. But there's also a lot of shame in that, in the sense that we kept that very private. And so I think that also was a reason for compartmentalizing my life as a parent of a child with complex needs, as well as being a physician. That we did that. I would have just sessions of sobbing and pleading. And I say that because I want to normalize all of it. Like, I don't want to come across as, oh my gosh, life is so great. Like it's, you know, it's incredibly brutal and it's incredibly beautiful and there's a lot of work in allowing. But I will say that we, to those dark places, we have awful thoughts and we have made some big mistakes along the way. So I do want to just normalize the human experience because again, many times people see my title or they'll see my social media or they see that I published a book that, you know, oh, here I am adding to society's idea of that one's got it all together. And honestly, I am here to share my mess.
B
Yes, yes, I think you embody that really well. I'm not getting a sense that there are any heirs being put on. So I think you're meeting the intention that you're wanting to put out. You've also mentioned your. The experience lightly touched on the experience of your firstborn. Her experience of going out trick or treating. As was she roughly three?
C
Yes.
B
Okay, so then what is the age gap between Soraya and your youngest?
C
Three years as well.
B
Three. So the. Can you share just a little bit of. Because I don't have. My children are 4 and 2 and we're like done just. I'm going to say capital D done. As much as I have any control over anything. So you, you at the time, you have a six year old, a three year old Soraya and you're now in a hospital bed again, you're holding your third child. And I, that was such a, I don't know how to really explain it, but holding my baby in my arms and then seeing my other child in the room, it was like, whoa, there's this whole other piece of my heart now that's outside of my body. I'm just imagining what your body and mind went through those three years, those first three years of Soraya's life and running after a toddler and juggling and managing and also working full time. Like, and there's full time. And then it sounds, My guess is you were full time plus. So can you just, what was that moment for you? Can you just briefly touch on with your third?
C
Yes, I, I think that there was actually a lot prior to the third in the sense that we all have plans. That's also like a big part of my message. My, my plan when I had married my husband is we were going to have two children. And so with having a third, yes, it was planned in the sense of when we were meeting with the geneticist regarding Soraya, there was a lot of back and forth about family planning. There was some ethical questions and theoretical questions of should she pass away? Would you be content with having one child? What does your family planning look like? And while these questions seem heartless, they were actually really important questions for us to think about where we had not thought about. Because again, our plan was to have two kids. And here we are being like, well, would we want our oldest to be an only child? And then it's, would we have a third third to replace Soraya? Would we wait until it's all of these really thought provoking questions. So even before I held my youngest in my arms, there was so much thought, so much planning that went into do we have a third? Because that in itself was its own question. And I will say that at the end of the day, between a lot of back and forth between my husband and I and meeting with our genetic counselor, we had exhausted all testing at that point for Soraya. We felt like we had enough medical knowledge to say that we aren't carrying a gene or carrying something that could potentially cause another child to suffer. That can we go into this knowing that we did everything to try to figure this out and that our chances of having a child that has another diagnosis is just as equal as if we, we have this experience and when the answer was yes, have a third, really to add more love, it wasn't A replacement with Soraya lives forever. We would want that. Sure. There was also this part of me that was like, I want. I was grieving the experience that I didn't get with Soraya. And that's not to negate who Soraya is. It is that I just, I wanted all of those things. And then I felt, if I'm not going to get that with her, why can't I allow myself to have that chance? Why would I hold. Hold that off? And the last stretch was, you know, the impact that that would have for my oldest, where she was actually at this point asking for a sibling. And she said, I want a sibling that can walk like me and talk like me. And we said, okay. Like, there is a lot that we're throwing up to bait, but we are doing our part that we feel that we need to do to make this decision. And we gave ourselves six months to try. And we said, if it doesn't happen, we're done. And it happened. And so there was a lot of fear of what will this child be like? But it also was another surrender where we are ready and this is something exciting. And it brought us so much love and we knew that our hearts could expand. And so holding her meant so many things, but she was like the most absolute beautiful baby. All my babies are beautiful. And every day since her birth, we've said, thank God we decided to have a thriver.
B
What a beautiful medicine she carries. She came in with the love. Oh, that's so great. And it seems, at least from what I've seen you share on online and on social media, is that the girls really hold each other. You can feel the bond at least with what you choose to share. And I'm sure it's not gummy bears and roses every day. They really seem like just this little trio, like a super trio.
C
They are a super trio of being individuals. I have really learned how birth process, I'm sorry, I should say birth order really impacts their experience in how they view illness, how it impacts them. I've also learned how they grieve so differently.
B
Yeah, that's so good. And I, I found myself compelled to ask more. But I also recognize this. That's maybe their story to tell.
C
Oh, and I can share whatever they have allowed me to share, which. Great. Yeah. Always ask permission.
B
Sure. I'm actually curious because you were your oldest daughter, so long term memory, I mean, it can be debated, but maybe around 4, 5 years old. So I'm curious what your oldest memory was because she was developing that long term Memory. While you and your husband were very much in the trenches with navigating those first three years of Soraya's life and then the decision to have your daughter, I would imagine the emotional container in the home was a very. Was at a very different place, which creates a completely different foundation for your youngest. But what was your oldest experience with that that she's comfortable with us talking about?
C
Yes. And, Nathan, one of the things that I will do to honor her is share that, because it's important to realize that it's a really not great time for her. In those first three years of Soraya's life, she will say that she felt forgotten. She says she has memories from the age of three.
B
Yeah.
C
And I believe.
B
Oh, of course. Of course. And actually, a main caveat to that is any kind of. And I think it's important to qualify, like, capital T and lowercase T, Traumas. But. But that those. The imprints and memories of that can, like, hijack the process of. It's different than remembering. Like a birthday cake. It's a little different. But please go ahead.
C
Thank you for acknowledging that. I do think that she would describe it as trauma. Do understand that that was really hard for her. For her. She said it's like Soraya is the son of our family, and the rest of us just orbit around her.
B
Yes. Of course.
C
There are times where she still feels that way, and we need to do a job of continuing to better ourselves as parents and trying to give her what she needs and realizing each child needs something different. I think the hardest lesson I've had as both the pediatrician and as a mother is you can't always parent your children all the same way, and that's not fair. I have found that we are constantly trying to reassure and make up for those three years, and we probably will be doing so for the rest of our lives. And I'm okay with it.
B
Yeah. Yeah. I don't know if you're familiar with the work of Dr. Becky Kennedy. She's. Her work is called Good Inside, and she doesn't work with children, but she's like a therapist for adults on how to work and interact with children. And I'm a big fan of a lot of her work. She has a lot of work on repair and how there's never an expiration date when it comes to repair. It's never too late, and it's not for naught, no matter how long ago it was. And it all comes down to some version of validation, which is your experience is seen by me. And I believe you. Like, I see your experience and I believe you. And that is if what a lesson for every type of. With every relationship. Doesn't matter what kind of relationship, but it's a tremendous gift and actually leads me to something that I had wanted to talk to you about, which is another quote was that families can provide transparency to life, limited children around a terminal diagnosis, comfort them when they are afraid of what comes next, and continue to embrace life despite ongoing challenges. And the note I made underneath that was that you cannot give what you don't have. I believe that I can't model, I can't offer. I can't give someone more love than I have access to. I can't give someone more grace than I have access to for myself. And what I'm curious about is how were you able to. Or I guess, where are you with respect to that, with the rest of your family? I mean, we could probably have a whole other podcast on your marriage. What are you giving to yourself that enables you to access that and offer that to your daughter? Because what she's asking for is repair and validation. And I would imagine that it has to start with you. Foreign if you've ever wanted to start a journaling practice but didn't know where to start, or if you've been journaling off and on your whole life but you're like, I want to take this work deeper. I've got you covered. I've written a journal called A Journal for Unearthing you. It's broken down into seven key areas of your life, filled with stories, sentence stems, prompts, questions, and exercises, all rooted in the work that I do with actual clients in my therapy sessions. I have given these examples to clients in sessions as homework, and they come back with insights that allow us to do such incredible work. This is something you can do in the privacy of your own home, whether you're in therapy or not. It has context, it has guides, and hopefully some safety bumpers to help digging a little deeper feel possible, accessible and safe. Safe. You don't have to do this alone. And there's also a guided, treasured meditation series that accompanies each section in the journal to help ease you into the processing state. So my hope is to help guide you into feeling more secure with the most important relationship in your life, the one between you and you. Hop on over to the Show Notes and grab your copy today. And now back to the episode.
C
That is a great question, and I'm so glad you brought this up. A lot of it has to do with having that model. And I'm going to just. I did not have that model. My husband did not have that model. We have these ingrained ideas of what type of parents will be. And the default is how you are parented. I would say, culturally, the firstborn is like a second parent. And I will. My promise to my oldest is to be transparent about this, because if I can share what I've learned, that is part of her repair and my was to help us, that she would be a helper to her system, that if something happened to my husband or I, she would be responsible. This is the way we have been taught. This is the way my COPA works. This is how my brain is wired. It wasn't until I saw her, it wasn't until she asked me when she was four years old, we were driving in the car to open the window and throw her out if I didn't meet her anyways, that I realized something needed to change. My thought process had never been challenged before. I had to neatly think about what parent do I want to be and can I create my own mama? And that took therapy to really dissect undoing all of those wires to recreate what I would have always wanted. My model is be the parent that you are in the situation. And that is a new way of thinking. It's absolutely radical. And it requires my husband to be on board, which is a huge aspect of trust, communication, and putting our children, their mental health first. This was an intersection of our life. Getting my oldest into therapy, me into therapy, my husband into therapy, and subsequently Sariah and my youngest. It's a requirement to be in our family because we're doing things so differently than generations in the past. Accountability, there's acknowledgement and there's an understanding that I've never done. And she needs to have grace with me, but I'm willing to do the work.
B
Recognizing our own blind spots, our own limitations is. It's another facet of shame. And it's also. It's like the entry point of true healing. Because even in the language of I can't see what I can't see, I can't see my blind spot. And so then how do you. What is it that makes that known enough that you can address it? And it's usually if you think if I'm going to continue down this metaphor of driving in a blind spot, if I try to change lanes and I don't see what's in my blind spot, I'm going to cause a wreck. And so sometimes it is in the wreckage that those unseen, unknown things become known. What a teacher your daughter is like, what a wise teacher she is because she allowed her pain to exist on the outside, which is so brave. I work with a lot of people who have spent their entire lives keeping their pain on the inside because they didn't even know it could exist on the outside. And that's really remarkable. Like, you have really remarkable kids.
C
I actually call them all my teachers. I appreciate you saying that. I also think there's a certain narrative around siblings and children with complex needs that they are super compassionate leaders, so understanding, so happy for the experience that they had. And while that may be the case, it's not everybody's experience.
B
Sure, yeah. Don't make a imposter child for being compassionate and polite all the time. Like, I am allowed to have the full palette of the human messy experience. That's so great that you said that. And definitely, yeah, I wouldn't want to rob them of any aspect of the full expression of their humanity and developing selves by saying, oh, like, what a tender moment. So thank you. I'm glad that you called that out. I can already feel I need a part two, because, oh, my gosh, the time. And we haven't even got to the don't cut your own bang moment. Before we step into the last question for today, I just wanna say thank you again. This has been just such a delight. And I any conversation that I can have where we just cut past the small talk and we get right into the bone, like, we get right into the meat, I feel it's just the best way, I think, to hijack getting to know somebody. And I ask you our final question. But now, Tasha, what is your don't cut your own thing moment?
C
My life is a series of them, but I will leave you with one tenderhearted but hopefully won't ruin your whole day moment.
B
Oh, no. Am I gonna cry again?
C
No. But I think it's fitting in what we've been talking about and the first that are just universal. So we have also decided to never have any pet. That's when we got married. Two kids, no pet. Soon, my oldest had asked for a pet, talked about how this would help her repair. So we got a cat. Soon Sariah wanted a cat and she wanted one to aunt with her. And we thought this would be a great idea for her to have a pet as she is transitioning and getting weaker. So we get a cat named Ohana, which means family.
B
I know that from Lilo and Stitch because my daughter is Obsessed with it right now. So yes.
C
And we are so excited to have this cat forever because this is the plan. And soon after getting Ohana, she's three months old, rare disease called feline intestinal peritonitis or lip. And we have decide whether to put her down or go for a non FDA approved treatment that is black market, only paid with cash and requires injections. 104 days.
B
Okay. Okay. I don't know where the story's gonna end, but I'm already. You've got me on pins and needles. So then what happened?
C
The cat was bought for Sariah. Of course, we got the cash money and we injected the cat for 104 days. And ohana still with us.
B
That. Oh, messed up.
C
Like seriously you're this.
B
Can one, can this be easy please? I know people who find feral cats and bring them inside and they're like 20, what's up with these? But you found ohana and Ohana was like, oh, you thought this was going to be an easy ride? You thought cats were low maintenance? Well, let me tell you what. Yep.
C
I've never injected a cat until this. Even being in the medical profession, this has been a wild ride. Oh God.
B
Yeah, I can relate. But it's not quite ohana level. But it is, it is still true too. It says a lot about my personality. We were playing outside and my four year old, I saw a ladybug and I was like, oh honey, look, a ladybug. A ladybug. And I let it crawl on my finger and I was getting it so she could get a little closer and see and it flew at her face and she experienced, I think she experienced a four year old panic attack and it just, she couldn't because she couldn't see it. And then she didn't know where it was and she didn't know if it was on her and it was terrifying. And so I, I don't have a fear of bugs. I catch them, release them and I, I just was like, what can I do? What can I do? And I thought, oh, I think you can buy caterpillars. And maybe if I can somehow let her see the whole experience of like caterpillar to chrysalis to butterfly and let her because she's also, she was also afraid of butterflies. I didn't add that. So ladybugs and yeah, ladybugs, ants, butterflies, they all really scare her. And I thought maybe if she sees it up close in a way that feels contained and not quite so out of control that this will help soothe her And I don't read. I'm not great at reading the fine print. I just want to get to the next thing. And so yep, bing bang, boom, boom, click click. And 30 caterpillars later. I yeah, I didn't know the quantity. I thought I was ordering five and I didn't know there were five in each thing that I got. And so one day three containers landed on our door and then two days later two more and I I don't know how I did it, but I We were sitting on like 30 caterpillars, but we just released all of the butterflies over the course of like the last three days. It's quite a lengthy process, not 104 weeks of injecting a cat. But by the end she held a butterfly, she released it, and now she feels super brave and tough. So the things we do for our.
C
Kids the things we do for our kids Next episode Yes, thank you so.
B
Much for joining me on this very special episode Episode of Don't cut your own bangs. I hope that you enjoyed listening because I truly and thoroughly enjoyed making it. As always, your time, your care, and your attention here mean more to me than you know. Before you sign off a couple of asks, Check out the Show Notes. Make sure to pre order your copy of Dr. Tasha's book. You're going to want to get that in your inbox as soon as it's available. Trust me, I have already pre ordered mine. Check out the Show Notes, Check out her links, follow her Stay connected with her beautiful work and please remember to rate and review and subscribe to this podcast. Your interaction with it 1. It opens up a dialogue and conversation that helps me improve and get better and create more things that you like the more you talk about the episodes. Share the episode subscribe to the podcast it helps grow the podcast and helps more people find it that are looking to better understand their messy human selves and feel less alone. Best things in life are shared. Share the episode like it. Subscribe do all the things. Click all the links. Thank you as always and I hope you continue to have a wonderful day.
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Host: Danielle Ireland
Guest: Dr. Tasha Faruqui, pediatrician, rare disease advocate, author
Date: August 18, 2025
In this deeply moving and candid episode, host Danielle Ireland sits down with Dr. Tasha Faruqui—a pediatrician, mother, and rare disease advocate—to explore the emotional terrain of parenting, love, loss, and growth in the face of uncertainty. The conversation traverses Dr. Faruqui's journey parenting her medically complex daughter, Soraya, discussing the medical system’s challenges, personal shame and self-doubt, the importance of surrender, and how her family ultimately learned to "suck the joy out of life" by intentionally seeking moments of happiness despite ongoing heartbreak.
Parenting When Plans Change: Dr. Faruqui describes her early visions for her children and the unforeseen turns when Soraya’s medical needs emerged.
"Not only does my child have medical needs of some sort in those early moments, but the child that I had expected is not the child that I will have in front of me." (05:29 C)
Medical Intuition & Self-Doubt
Both Danielle and Dr. Faruqui discuss the push-pull between parental instinct and professional knowledge, and how external reassurances (both from oneself and the medical system) can silence needed advocacy.
"You're constantly second guessing yourself. You're constantly getting reassured...I would say about 90% of what we do is reassurance." (13:35 C)
Shame in the Parental Experience:
Danielle underscores the universality of feeling that "I should have known better" and how shame compounds when expertise or self-image is tied to control.
"That's like the slogan of shame." (23:20 B)
Dismissal by Professionals: Dr. Faruqui recounted being discouraged by a senior pediatrician from pursuing specialist referrals, highlighting the power dynamics and systemic issues in medicine.
"If I referred you right now to a specialist, they would laugh at you and they would laugh at me. This baby is fine." (15:10 C)
Tipping Point—Trusting Instinct: Her resolve crystallized after recording Soraya's distress during feeding, rejecting external minimization and advocating for diagnostic tests.
"That was my breaking point...I am done having anyone tell me what to do." (27:38 C)
Medical Crisis & Emotional Fallout:
A sudden shift from dismissal to urgency left Dr. Faruqui emotionally overwhelmed, grieving, and isolated—even as a medical professional.
"I remember going home and just crying in the closet..." (35:05 C)
Letting Go of Certainty:
Acceptance began not with answers, but through letting go of the obsessive quest for a diagnosis and outcome.
"Accepting the gray doesn’t mean that I’m accepting Joy, though. That is just acknowledging that science has a limitation and I’m going to stop using up energy in a way that is not going to benefit not only her, but our family." (42:14 C)
The Role of Make-A-Wish: Life-Changing Support:
The family’s Make-A-Wish trip revealed new possibilities—breaking self-imposed limitations and illustrating the necessity of being open to magic and joy, even alongside sorrow and uncertainty.
"What if we all made a list of what we wanted to do?...Let’s make these memories happen, even though alongside her health is changing..." (48:25 C)
Creating a Family Motto:
Soraya’s phrase, "suck the joy out of life," became a rallying cry to actively seek experiences of joy, rather than passively awaiting them.
"You have to actually seek it. I think that we were just waiting for things to get better. We were waiting for joy to just fall into our lap..." (49:03 C)
Siblings as Part of the Journey:
Dr. Faruqui is transparent about the impact on her oldest daughter, who described her young years as feeling forgotten as the family focused on Soraya.
"She says it's like Soraya is the sun of our family, and the rest of us just orbit around her." (61:16 C)
Ongoing Repair and Validation:
The family continues to prioritize emotional repair, therapy, and validation for all members. Danielle references Dr. Becky's principle: "There's never an expiration date for repair."
"Your experience is seen by me. And I believe you." (63:00 B)
"My model is be the parent that you are in the situation. And that is a new way of thinking. It’s absolutely radical." (66:03 C)
On Surrender:
"The motto of my life...this word, surrender, is something that is so hard to do over and over again." (39:52 C)
On Joy & Suffering:
"It’s incredibly brutal and it’s incredibly beautiful and there’s a lot of work in allowing." (53:17 C)
On Identity:
"Just recently, I've realized I don’t have any hats. I am all one. I can’t actually break myself apart. And the sooner I let that blend, the better my perspective and my ability to cope." (49:02 C)
On the Children as Teachers:
"I actually call them all my teachers." (70:11 C)
On Repair:
"There’s never an expiration date when it comes to repair. It’s never too late, and it’s not for naught, no matter how long ago it was." (62:50 B)
Dr. Faruqui shares a story about getting a cat for each daughter—a plan for joy and healing—only for one cat, Ohana, to develop a rare disease requiring 104 days of black-market, cash-paid injections.
"Can one, can this be easy please?" (73:40 B)
This moment, both heartbreaking and humorous, encapsulates the unpredictable, messy, hilarious, and ultimately loving character of the family's journey.
Danielle responds with her own story about accidentally ordering 30 caterpillars to help her daughter overcome her fear of insects—a lighter, relatable, and hilarious ending that underscores how far parents will go for their children.
This episode is for anyone navigating impossible transitions, wondering if they're enough, or seeking hope and light amidst the mess. Both Dr. Faruqui and Danielle offer their stories so others feel less alone—and to show it's possible to both "suck the joy" out of life, and let it in, even in the darkest of times.
"Life is incredibly brutal and incredibly beautiful—and there's a lot of work in allowing."
— Dr. Tasha Faruqui (53:17 C)