Chrissie Ep 27 (Tasha)
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Tasha: [00:00:00] when you are stripped and almost shoved into the dark, you have a choice. You can stay down there, or you can try to get out. that's really what it is, is learning how to coexist with darkness and joy.
Chrissie: may no suffering go untransformed. In other words, if we're going to suffer, like let us make it useful suffering. Let us bring the jewels out of it. If we have to go into the dark cave, let us bring something out that can be of use to the world.
Tasha: The one word that I don't use for myself is fearless. We're terrified, but we're doing it anyways. I love the word courage, that's what courage is. And that's what being courageous is unfortunately, or fortunately we are not fearless. This is so scary and we're doing it anyways. [00:01:00]
Chrissie: You're listening to Solving for Joy. I'm your host, Dr. Chrissie Ott.
Hello, everybody and welcome to today's episode of the Solving for Joy podcast. My guest today is a new friend who I am a huge fan of Dr. Tasha Faruqui uh, Tasha is a pediatrician. She loves caring for newborns, ADHD, helping kids sleep soundly, behavioral health. But, that is really just the tip of the iceberg for Tasha. She's a mom of three, um, one of her children, Soraya. is living with an undiagnosed neurodegenerative condition and is currently receiving hospice care, which has made Tasha an expert in advocacy, an expert in sharing about anticipatory grief, and really an [00:02:00] expert in solving for joy through one of the more challenging routes that a human can take in this lifetime.
So I am so excited to speak with her today, um, and not to, you know, like bury the headline, Tasha, but I just learned that you are about to have a book published in September. So welcome please add to that little intro bio. And then we agreed that you're going to tell us two awesome factoids that are not in your bio.
Tasha: Yes. Well, I'll tell you a little bit more about me before I get to those fun facts, um, just to keep everybody guessing. Um, but yes, um, I appreciate the kind intro as much as I would love to say that my story has always been in a place of, you know, solving for joy or finding joy that has not been the case. And this has been a process and they [00:03:00] think that there's so much, um, in my experience from medical training, and then having a child that had some sort of complex medical needs that I wasn't sure when she was first born, and then going through the medical odyssey for several years and trying so hard to figure out what does she have, and not being able to imagine at that time that I as a pediatrician, my husband as a surgeon, that we wouldn't be able to figure it out.
So I think there's different phases. There's phases of you know, grieving the child that you thought that you would have and then also grieving the fact that you may not get a diagnosis. And for several years, we created a new dream for Soraya and that was going to be living a long life with complex medical needs. And it was actually more recently that we learned that her diagnosis was more, uh, degenerative and that there was even a neuromuscular component. And so I think that's one of the interesting things is [00:04:00] sometimes when people meet me, there's this you know, maybe this realization that like I've always been living this life and, and really I'm still learning and this really this perspective has really shifted as Soraya's health shifted.
And so in the past two years is when we, uh, entered with palliative care and soon thereafter hospice. And so that has been kind of our, our story, but I'm learning that our story is evolving. And as much as I am feeling like I'm so done learning, there are more lessons that come our way, and there's curveballs.
I also found out a few months ago that I carried a positive gene for, um, cancer. It's a gene called PALB2 that I had never heard of and really in thinking about having Soraya, having my practice and how to fit in as much joy as we can in our life, it helped me make the decision to get a [00:05:00] prophylactic bilateral mastectomy, which I'm actually still on a medical leave from that. So um, I just feel like the story is continuing to evolve, but that is where we are at in this moment.
Chrissie: Damn. I just want everybody to have a second to like actually absorb all that you just shared. And I want to, um, reflect back and appreciate how important it is to normalize the struggle. Um, I know that's part of your, your reason in advocating and sharing is to help people who are in the struggle to know that the struggle is not all there is, even though it is a super real part of this journey.
Tasha: Yes, and in thinking about, you know, why? Why am I even sharing this and and to kind of just hit on that a little bit? I think that a lot of it had to do with me not being able to figure out how to live. And [00:06:00] And I mean that in, it sounds like so generic and vague, but I truly mean that, like, how do people who are in this situation put one foot in front of the other? How do they comprehend scheduling for 15 subspecialists and acknowledging that their child is declining and sharing that experience with her, our entire family, and then still go to swim practice and dance practice. And how do, how do people do that? And if I'm feeling like I don't know how to do that, and here I am as a trained physician, pediatrician at that, then how do others do this?
And so I think for me, my, my main purpose for sharing is in the event that it could help somebody else realize that they're not alone. Or creating a community where people can help me, share with me, because I didn't really have a community of people to even talk to this about.
Chrissie: [00:07:00] I have a, um a guiding principle, and it is may no suffering go untransformed. In other words, if we're going to suffer, like let us make it useful suffering. Let us bring the jewels out of it. If we have to go into the dark cave, let us bring something out that can be of use to the world. And I just really feel and see you, um, doing that, doing it so hard.
Um, so thank you, thank you for going first and sharing about the journey because there are absolutely other options. Thank you.
Tasha: Thank you for saying that. I appreciate that.
Chrissie: I am curious, and I'm sure that, you know, it's probably on listeners minds also. What, what catalyzed you? What [00:08:00] activated you? How, how did you get the help that you needed internally, externally? What were your resources to go from You know, feeling stuck or at the effect of this, these larger circumstances into being more like I'm going to be self sovereign and alive through this journey.
Tasha: I think that question is very multifaceted and thinking about, you know, there is like the day to day logistical help that we need. Then there's the emotional aspects of it. There's the family dynamics and how you interact with the world. And then there's my, my practice, which is, you know, ironically or not ironically, working with kids. And so I think that, you know, to kind of look at the big picture, there was a time, you know, pre me wanting to transform.
So I think there's also this idea, at least for me, that, [00:09:00] um, once I got through med school, I was, I was done transforming. Like I was the adult that I was going to be and that I didn't have, oh yeah, absolutely. Like there's a sense of like delayed gratification, right? I just have to get through X, Y, and Z. That's going to be the hardest thing. And then, I'm going to be happy, and then I won't have really any other struggles. And if it is, it's going to be like rare, like it won't, it will probably happen to my friend before it happens to me.
And this, there's also an idea that I've had that if you've had any struggle in the past that you probably won't have any more. Like there's like a, there's like a cap. An immunization. Absolutely. Absolutely. Conoculation. And so I really. I really, like, lived my life believing this for a very long time, and, you know, I think to answer your question where I don't go into each aspect of all of that is, as things were getting stripped away from me, so first it's like the anger and the [00:10:00] rage that this is happening, like the why me, then it's like these are the people that are supposed to help me, and then they're not there, and then it's like I don't have any help. Okay, we're going to just kind of hide.
And so there's like this like living a life that's kind of in the dark where I kept my medical practice so separate from what was happening at home. I truly felt that if I shared with my patients that I had a child that was medically complex and one that was undiagnosed, that maybe they would think less of me. Maybe they would say, gosh, if she can't figure out her own daughter. Like, how is she going to figure out mine? And, or maybe she's not going to be as reliable because her kid's always going to be sick. And I realized that these voices and these thoughts are all internal. Like these actually, none of this really happened, but these were all the fears.
So I kept it so separate. And I think the breaking point for me is having her be in hospice and then having her siblings know and it was almost in a [00:11:00] way to protect the siblings. I had to start sharing our story so that way they didn't have to. So whether it's my youngest that's crying at dance class. I needed to tell the dance teacher, even if I hadn't met them, like, hi, I'm Tasha. You know, Lena has a sister that is in hospice. Like, yeah, we don't know what she has. Yeah. It's declining. Yep. Nope. We didn't, we didn't know she was dying her whole life. I don't know if that's going to make a difference. Nope. We don't know what her timeline is like. You go through all of this thing.
And I created a mantra that was like, say it, don't feel it. And I did this to protect the kids from having to do it. And then when it came to myself, I just wasn't ready until I realized I had nothing left. If I didn't truly learn how to live, there's literally nothing left. Like how I could, it's like almost like I was stripped of everything. And at that point, it's like, if she is going to leave this earth, I have to do something and I need to figure it out.
And so it started with, [00:12:00] um, taking some time away. Um, I did, I did a retreat of just like meditating, taking some space away to then say, okay, I need a guidebook. So I had asked palliative care. Do you have a guidebook? I asked the He Monk team, do you have a guidebook? Is there any books or anything like just something that can tell me how to live? When you know your child is dying. Not after death. There's a lot of books on grief. But what do you do in this space? Couldn't find anything. So then I'm like, I'm gonna do like a YouTube channel.
And so I was at one of these retreats that I met with a grief counselor and she had said to me, Have you thought about writing a book? And I was like, no. I have not. And so in thinking about that, I, um, it was, it was quicker to start an Instagram community. And while I was doing that, I was working on my manuscript. And, um, then as much as I really thought I was doing this for other people, I learned so much more about myself and I just [00:13:00] completely am and still currently in transformation. Um, I've had patients that I've had for 10 years that never knew about Soraya, never knew about what I was struggling with, and they are now coming into the office, you know, in tears. And it is this beautiful aspect of humanity that I had never thought about. And it's, It is something that I had never seen done before, but that doesn't mean it can't be done.
And I think that is the other lesson, is if it's ever been done, it's okay. It's okay. Um, I never thought about writing a book. I never thought about this before Soraya, um, but I think it's almost like when you are stripped and almost shoved into the dark, you have a choice. You can stay down there, or you can try to get out. And like how we do that and how long it takes, you know, I think that everybody's [00:14:00] different and I'm, I'm not here to tell anybody that's struggling that you have to share, that you have to like be public about it. That is not going to work for everybody. But for me, there was this, Like really inner calling to put this, you know, I know it sounds cliche, but pain into purpose.
Like I could not be going through all of this to not share and to connect. And again, the intent was for others, but the gain has been with myself. And honestly, even within my family, uh, my oldest was not allowed to have social media until I got an Instagram. And so now she sometimes learns about the challenges that I'm not, you know, always vocal about, like, wow, it must be really hard to be a parent and to, you know, fight for that IEP and, you know, get the medications covered. And, you know, all of the things that I talk about on the account are just really real. Um, and I think that it's been a huge blessing. Um, I know that sounds so strange, but [00:15:00] that's, that's really what it is, is learning how to coexist with darkness and joy.
Chrissie: That is. It's golden, so valuable. Um, the Instagram handle, I know everybody listening is like, where do I get the Instagram handle? It is the Faruqi5, F A R U Q U I, and the number 5. You're welcome. Um, thanks for sharing that. And it's so important to, you know, like, your, your assignment is not everyone's assignment. But you are taking your assignment so seriously. And, um, expressing yourself in it so beautifully. And I think, you know, when we connected, it was just, like, such an amazing gift to get to know that you are out there doing this work and sharing it, the inner work, [00:16:00] and then sharing it on the outside. Um, Tell us what your family slogan is and what it has to do with joy.
Tasha: Absolutely. Um, so, you know, before I tell you the slogan, I have to kind of tell you how we got to the slogan. So, um, one of the things is, is as soon as Soraya entered palliative care, we signed up for Make A Wish. And, at that time, Soraya had just started with her BiPAP ventilator at night and, um, You know, we were needing it a lot more, and we had a cough assist machine, she's G tube fed, so we have a lot of supplies. And so where I'm going with this is we don't really travel, um, out of fear. Just like so much stuff, like so much stuff to carry. It's exhausting, just the mental gymnastics just to pack. And her make a wish was to go to Hawaii and surf. And so it was one of those things where I was like, are you sure that's what you want to do? And, um, she was adamant that's what she wanted to do and we were terrified. Um, we didn't [00:17:00] tell her that and it was, it was wonderful to have Make A Wish, you know, do the logistics.
But what that really taught us is that we can do it. Like we still carried the vent on, on the suitcase. We still had all the meds. We were at that time, she was doing pureed feed by G tube. We were blending stuff and mixing stuff in the hotel room. We had a beach sand, uh, a sand wheelchair and all these things that I didn't even know existed. And it was really that trip where I'm like, actually, all of us were like, we are so happy. This is like the one time where we can just feel joy. And it was really that moment that we said, why don't we do this more often? Like not just for Soraya, but for all of us, like. Why don't we find things and like actively like aggressively go after that and we're like, yeah We're gonna say we're gonna suck the joy out of life. And from that [00:18:00] moment that has been our family motto and anytime we are starting to feel things are getting heavy it is time to sit down. Let's have a family meeting. Let's talk about what's on everybody's bucket list. And let's see how we can make that happen to make sure everybody gets to fulfill that.
And, you know, sometimes it's big trips to Hawaii and other times it's making a s'more by a campfire. Um, so it can be big, small, And we sit and we, of course, talk over the logistics of, um, you know, finances and everything else. But for the most part, these are the ways that we suck the joy out of life.
Chrissie: It reminds me of Ross Gay's Book of Delights. It's like finding the things that are delightful and doing them, immersing yourself in them deliberately. Yes. Because it is the life affirming choice to do that. When we have [00:19:00] access to it.
Will you tell us a little bit more about Soraya? We haven't, um, mentioned how old she is or, you know, what it was like to first begin to notice something was not right. Um, give us a little background.
Tasha: Yeah, absolutely. So Soraya is 12 years old and I should preface by saying, um, You know, with all three children and my husband, the biggest thing is, um, having consent from them to share our story. So as much as I felt so strongly about sharing, it did take some conversations with the family. The one thing that I will say is this has been Soraya's passion. Um, she has a heart of an advocate. She is, she's verbal. Um, she is cognitively, um, pretty much there. Um, so she is, you know, almost a, a teenager that loves makeup, that loves music, that [00:20:00] loves trendy fashion. Um, and.
As far as her, her personality, which is, this is what I do love about reading her, her notes from her physicians is they all use the adjective spunky. And I love that because it's not a typical word that, um, physicians use in, in their notes, but I love that. And I think that that kind of nails it. She is, um, no filter. She is all truth. Um, she is all loving. And She's, she's, I mean, I always say she's like fire and, you know, she is an Aries, um, so she is a fire sign, but she is just bright, loving, you know, and I also feel like she, she sees you, she sees everybody. Um, she can look at somebody and get a sense of what they, what they feel and, and due to that she has just kind of taught us how to make [00:21:00] friends where we least expect it. Because that's the other fallacy that I believe that like, oh, I have enough friends I don't need any more new friends, and she's totally squashed that as well. So that's a little bit about her.
As far as like her kind of clinical picture. I had a very normal, kind of, as I would like to say, boring pregnancy. Um, nothing that was off. Um, when she was born, it was a vaginal delivery. She was born SGA or small for gestational age and that was a little unusual because she was my second. Um, when she tried to feed and I breastfed, I felt like she like really fatigued really easily. But this was right after residency. And I remember saying something to the pediatrician and, you know, she's like, Ah, you're just kind of like overthinking this, like you've done this before, like she's fine. And I was like, yeah, but she's SGA and my first wasn't. Again, you're overthinking it. Genetically, you and your, you know, your spouse are on the smaller side. So I think [00:22:00] genetically this is on point.
And then fast forward to the two week appointment. Soraya was making a weird noise when she was feeding. I brought that up and the pediatrician said, Are you studying for boards? Because you're totally overthinking this. Like if I were to refer you to an ENT right now, they would laugh at me. And so I just kind of kept pushing down this like, Something just seems off kind of feeling and um, when it was at the two month appointment At that time I needed to go back to work fairly soon and I was working for the National Health Service Corps Which is underserved medicine, but it is a commitment to work full time So there was no flexibility in that. And I couldn't get Sarai to take a bottle and so at the two month visit I brought this up, And again, the pediatrician tried to reassure me and she said, you know, you're just so good at breastfeeding when you get to daycare, she's not going to starve herself. She will figure it out. Just keep doing what you're doing. So by the four month visit, I had been back at work, you know, 40 to 50 hours a week.
[00:23:00] And, um, she was force fed an ounce during her 10 hour daycare days. And then I would nurse her all throughout the night. But by four months, she was not making it on the growth chart. She was failure to thrive. And I felt so defeated, so exhausted and my pediatrician's like, you got to give her solid food. Like you just got to start feeding her. Like she's, she's failure to thrive. So grudgingly just like kind of pushed down my instincts of like this doesn't feel right. And I fed her and we fed her some, you know, baby oatmeal and she made this noise and I was like, that's strider. I recorded it and I sent it to the pediatrician and I didn't ask. I said, I want to swallow steady.
By the time the Swallow study got scheduled, it was a month later, and she was aspirating, um, so this was found at five months of age. And so now we've got a baby that is failure to thrive, feeding difficulties, stridor, and aspiration, and it goes from nothing's [00:24:00] wrong with your child to Oh my goodness, she probably has SMA and she's going to die. And so it, we just kind of got swooped into this panic of what does she have and how long will she live? And we went from like nobody being concerned to nine subspecialists. We got a G tube placed. We did, you know, exome testing, which back then was like very new. We, uh, you know, does she have adrenal leukodystrophy? Does she have Zellweger's disease? Does she have Rett syndrome? Does she have a disorder of neurotransmitter? I mean, like you name it, we were looking it up. We were right there with the geneticist trying to figure out what does she have.
Um, we then even went as far as getting a muscle biopsy to look for mitochondrial disease as she has every system of her body impacted. Everything came up non conclusive. And so, really, Um, and she, this was about three years and by age three, we kinda were like, okay, we're going to come to terms with, we might not get a diagnosis, [00:25:00] but she's alive. So then we had her in therapies, speech therapy, feeding therapy, cause she still had the G tube, OT. And, um, Um, we just kept going to all of her subspecialists and we decided to move to Cincinnati. That's where I, where I did my training and, um, I knew that they had the resources for the rare and she was kind of moving along. She was walking, by age two, talking by age three. I mean, she had AFO braces, had a G tube, um,
But still was able to learn how to read, how to talk, was in mainstream classrooms with some getting pulled out. And, um, kind of, we lived this life of lots of appointments and, um, having a child with a disability, she had some sensory needs that really, you know, made people think that she had autism. Just cause loud noises really bothered her and certain touches and certain foods, but for the, for the most part, there's this, you know, [00:26:00] idea of passing, and I feel like many people were shocked when they learned that she had a G tube or any medical complexity.
And it really wasn't until 2020 when we're in the pandemic and we're doing a bunch of virtual visits with everybody that Soraya got just a lot more fatigued, which is a very, um, vague symptom. And then she wasn't walking as much and her gait looked different. And so this was a big shift. Um at that point we told our pulmonologist about it who, you know, took it very seriously from what you can from a virtual visit and we ended up getting a an MRI of her lungs just to kind of just see how things looked and um That was in person obviously, and when I was with her, they told Soraya take a big breath. And when she went to take a big breath, I didn't see any chest wall movement. And that was something that I had never looked for, and I don't remember seeing before. So again, that night when I went home, I [00:27:00] pretended that we were playing doctor, and I said, can you take a big breath for me? And I recorded it, and she couldn't.
Um, and I sent it to the pulmonologist and it's, it's funny how history is repeating itself and I haven't even noticed that as I'm telling the story, um, differences that pulmonologist called me at a, at 10 o'clock on a Sunday night and said, you know, let's look into this further, let's get a sleep study. And she had multiple sleep studies in the past and had done fine. Um. But at this point, um, that sleep study did show hypoventilation due to chest wall muscle weakness. So that was in early 2021 that we started the BiPAP ventilator. And I think with that big shift, um, it's kind of like, unfortunately I kind of knew like that.
I don't know how long we can stay in this place. You know, there's this big question of, can we just do nighttime vent for the next 10 years and we're good. Um, but that shift really, pushed our team to refer us out. And I also think that that's, that's huge when an institution can say, let's get some more help here. Let's see [00:28:00] if we can figure it out. And, um, we got referred to the NIH, um, At that point in, you know, she's in a couple of research studies, but essentially from that point, it has been a decline.
And it was myself that kind of asked for palliative care and I, and I think that's a, you know, a conversation on its own, like, when do they come in, how do you know how, and I, and I, and I don't know the answer, but I can just tell you my experience that, um, yeah. It was the best decision of, of our life, um, but it wasn't one that was easy. And then, you know, along the way there came more decisions like, well, Soraya really could have used a trach a year ago. And, you know, how do you make a decision like that um, with somebody who's verbal, who has insight, and is aware of what's happening to her body.
And then the question of, do you tell her that she's going to die? Do you tell her that her, that we don't have a cure? Like, what do you do? And I, I'm just mentioning all these things because we're all figuring it out as we went. Like, [00:29:00] none of this was like, oh, because you're a doctor, you know what to do. Um, all of it was terrifying. All of it was being in a land of uncertainty. And ultimately, we allowed Soraya to make the decision of to get a trach or not, and, and she does not want one. And, um, she also was asking about what's happening to her body, and we, as a family, decided to be honest in an age appropriate way with the guidance of her care team, her psychologist, Child Life.
And, it is now a shared experience, and as much as I hate that we're experiencing that, I will tell you to have the ability to share it together feels so much better and again I don't want I don't want any of my children to feel pain or sadness. I don't. However we're so all realizing my youngest will say our lows are so low like beneath the ground but that makes our highs like roller coasters up in the sky and [00:30:00] I couldn't have said it better. I couldn't have said it better.
Chrissie: We're sharing all of those details. I I just, you know, I wish it had gone differently. I don't know that knowing earlier would have done very much, but I, um, I really empathize with, you know, your experience of having a clinician who, um, wasn't able to be in the not knowing was really reflexively in the identity of the one who knows, um, and who inadvertently dismissed really important observations from a parent who is also a physician by dismissing your clear observations and intuitive concern as overthinking. So I that's, that injury calls [00:31:00] out to me. Um, I'm so sorry that that happened.
Tasha: Thank you. I, I know this is gonna sound weird now, however, I think because as you mentioned, I, I'm sure I would feel differently if I really thought it would change Soraya's outcome of where we are, but I will say that that experience has allowed me to practice in such a different way. Yes. Yes. You know, as much as I have told you that I kind of keep, or I, I had kept all of this part of my life very private, what I did from that point on when we moved to Cincinnati is like the secret people that did know and what was going on were residents.
So I actually went to my, my residency at Cincinnati and I said, I need to lecture. I need to lecture to these residents. I need to tell, I need to tell people about the experience. They can do better. Like I just, I felt, I felt like, Oh my gosh, I must have done this to so many people and not realized it. [00:32:00] And that was one way that I could fix it just like small groups of residents and I would tell them this very story and I would say I was a pediatrician, my husband was a surgeon think about these families that don't have that background and don't have that privilege to speak up louder and they were just continuously getting dismissed that that is something that if that didn't happen, I wouldn't have that fuel.
So, you know, yes, it's awful that it happened. And honestly, it shouldn't happen to anybody. It should not happen to anybody. It doesn't matter if you're a doctor or not. However, it's allowed me to bring this ugliness to the surface, like this is an ugly truth and, um, it is something that many of us need to take a step back and, and change and it's, it's never too late. It's never too late. And it's not just, you know, residents. I just like to start there, but.
Chrissie: That's right. Yeah, it's humility, it's inventory, it's reckoning, um, and it's [00:33:00] complicated, right? Because especially as pediatricians, we know that a large part of the helping we do is alleviating anxiety and reassuring people about what's normal. And it was just somebody who missed the mark and thought that's what they were doing in that moment.
Tasha: 1000%. I think that's the, I have no other word for irony than irony. Um, but thinking about what pediatricians, I mean, I'm general peds, you know, like general peds in itself is so much reassurance, so much that I, um, You know, there are days where I'm like, I can't believe that this is the role that I'm in. And also there's a reason why I'm in this role and we need to shake things up. And between these experiences, we can really create an impact while really transforming ourselves.
Chrissie: Similar experiences or like insights from others experiences directed me as a [00:34:00] pediatrician, both as, you know, general peds when I was practicing outpatient, um, all the way to, you know, inpatient hospitalist peds and now medically complex care, is that I always, you know, there's an asterisk there, but I would say almost always, um, cushion my reassurance with context, with limits. I really feel like this is probably not something we have to worry about and if it persists, let's talk about it again. Like, please bring it up again. Let's keep that door open because I hear that you're worried about it. You know, I might be 99. 9 percent sure what's going on, but I always want to leave the window open to revisit. And to sometimes say, look, it's your intuition. Um, I'm going to honor that even, even if it means ordering a test that I don't think is going to be positive, [00:35:00] sometimes just that spidey sense of I suspect something is off here or the parent is feeling off. I'm going to listen a little bit deeper.
Tasha: I'm impressed that you're, you're doing that. I love that. I absolutely agree. And I think about, you know, you mentioned like ordering a test where even if you feel very strongly that it's going to be negative in those moments where I'm like, you know, what is this doing to healthcare? Am I, am I making a right decision? I think about, I usually say are you losing sleep over this? How is it impacting the caregiver's daily life? If they can't focus on anything else, this is actually saving millions in the future. I'm being so serious because I think about you not knowing this information is having you treat and care for your child differently because of the increased anxiety that [00:36:00] it's worth exploring.
And then the other part is asking the question, what is, what is scaring you? What is the scariest thought that you have? Because sometimes it could be something that I could easily prove in a different way. But as a, as a parent that doesn't have a medical background may not know, Oh, I didn't realize because they had normal vital signs that there's no way that could be possible. And so it's always worth exploring. It's always worth exploring. Like, what is that fear?
Chrissie: That is so good. I'm just thinking how lucky your patients are to have you Tasha
Tasha: thank you.
Chrissie: Yeah. Um, we spoke a little bit about the Courageous Parents Network. Um, has that been a significant part of your journey as a resource?
Tasha: I would say it is a significant part of my journey now. And the reason why I say it in that way, my only regret is that I hadn't heard about it [00:37:00] sooner. I really wish that somebody would have told me about it in our 15 subspecialists, um, But I, I didn't hear about it until we were well into, uh, palliative care. And I will say there is a plethora of information there. There is a community there and it's not, as I mentioned, it's never too late to, to make new friends. And so, uh, their programming is excellent. Um, the guidebooks that are there are excellent. I have loved
Chrissie: Tell our listeners a little bit about what they are and I'm happy to do it, but
Tasha: Absolutely.
Chrissie: From your experience. Yes.
Tasha: Yes. Yes. Um. Um, from, from my experience, uh, they actually have numerous resources. So I will say that, you know, when going onto the website, please don't think that it's just um, one component just for parents. While the name is Courageous Parent Network, they actually have multiple resources even for clinicians. um, so how to have difficult conversations, how [00:38:00] to, guide families through, um, the process of how much their life is affected, and I don't even just mean medical decisions.
Um, and then there's, there's also, there is sections on caregivers, um, they are doing more work with siblings. There are also doing the neuro journey, uh, which is really looking at children that have, um, neurological conditions and those that also have, uh, conditions that are showing progressive decline.
And so they're, they're doing a lot. Um, one of my favorite, uh, resources that they have is they have these like in the room lecture series where they, um, bring experts, authors anybody that has experience with, uh, children that are either in hospice or caregivers or siblings, and you can have live conversations with them.
So these are some ways that I have engaged and have really, uh, appreciated, uh, I [00:39:00] wish I knew about it sooner, but again, it's not too late to, to spread the, spread the news. I also have found the Conversation Project. That is another resource that I wasn't aware of as far as just having conversations about what end of life decision making will look like. As much as Our story is about Soraya. Uh, she's really taught us that these conversations are really important to have with all of us. And it was one of those things that I had never thought about. Like, here we are questioning my 12 year old, like, you know, do you want a trach, do you not?
But just recently, like last month I asked my oldest and my youngest, well, would you want a trach? Like, why are we not? You know, discussing it doesn't mean that that's what you're going to feel all the time, but I think it's wonderful to normalize these conversations. It just, and like, what are your preferences? What would you want? And I've been doing that a lot with my family, and some of the answers have been so surprising that I'm [00:40:00] just grateful that there are resources like that. I just wish that more people knew about them.
Chrissie: The other side of that that it makes me think about is asking them what they wish Soraya wanted, you know, like, like, would you like Soraya to have a trach? Um, noticing that it's not their decision, of course, but then having the ability to express their heart's desire for their sister you know, for your daughter.
Tasha: Actually, that actually came up. Uh, it actually came up that our, the siblings wanted different things for themselves than they would want for a loved one, but that happens with adults as well, so. Right. Right. So even normalizing that, like, I mean, I don't want to say conflict, it's not a conflict, but that realization of, I think writing it down or saying it out loud [00:41:00] allowed us to pause and I said, Oh, that's, that's interesting that you would want that for someone else, but you wouldn't want that for yourself and let's, let's explore that or let's rediscuss in a few months and see what you think. But yes, that absolutely came up.
Chrissie: How beautifully complex,
Tasha: oh yes,
Chrissie: I think about what, um, what a high level, what a masterclass in resilience your family is living and then living out loud so that others can, um, you know, find resource and inspiration in it. Such strength. Um, and I, You know, I love how the word courage has its Latin root in cur, for heart, because I feel so much heartfulness in your courage, um, to take this journey on with your eyes open [00:42:00] and with your heart open, just such a deep ball of honor.
Tasha: I absolutely, I love the word courage, uh, for that reason. Because the one word that I, I, I don't use for myself is fearless. I don't use the word fearless, um, for myself, for Soraya, for my, my kids, um, for my husband, we're terrified, uh, but we're doing it anyways. And so for me, that's what courage is. And that's what being courageous is unfortunately, or fortunately we're, we are not fearless. Uh, this is so scary and we're doing it anyways.
Chrissie: I used to use the word fearless, um, but I, I don't really use it anymore because I think that if we, um, engage in the delusion that we're fearless, then we're just fear denying. [00:43:00] We've actually just, like, cut off our agreeing to feel fear. Even though it's going to be present, like true fearlessness is idiotic. So many of us are fearful right now, you know, on a, on a macro scale. Um, we are fearful of the apparent harms, um, that are, that are being done at high levels. And we can be courageous, can have courage together. Absolutely. Okay. What are the two things from your That are not in your bio, that we get to know.
Tasha: So one of the two things is there was one time in med school where I won the karaoke contest for [00:44:00] all of Glendale, Arizona that was at that bar and I had the prize of having 25 cent beers for all my friends that night. And what song did you sing when you won? Oh, okay. We're going there. Baby got back.
Chrissie: Yes.
Tasha: It's true.
Chrissie: I love it.
Tasha: The second fun fact is I made it to the semifinals for real world casting back in the day. And it was the second season for New York. And so that was a fun experience.
Chrissie: Um, do you wish that you had actually gone all the way through and have had the season.
Tasha: I actually kind of do. I'm not necessarily a person that's like everything [00:45:00] happens for a reason. I don't, I don't actually say that either. However, I do really. Want to be yeah, I wish I had that experience. I think there is there's something about Me always saying like oh I feel like my life is a reality TV show that I would love to have that in my bio like actually I've done that and so I also Always wish that I could be That true authentic person on a reality TV show. So yes, I do wish.
Chrissie: I wonder what Sliding Doors Tasha would be like who actually was on the reality TV show. Maybe there's um, there's another realm where you are living the life of the Tasha that was on the reality show. We'll say yes. We'll say yes. That's right. . Final words and places that listeners can find and follow [00:46:00] you.
Tasha: Yes. Um, for those that want to follow our family journey and really want to know the nitty gritty of our day to day life and how we are finding joy and sucking the joy out of life as well as living in a lot of grief. Uh, you can find me on our Instagram at the Faruqui5 and also you can find me on my website at TashaFaruqui.com on the website has upcoming speaking engagements and if you, um, currently, I, I love speaking with, as I mentioned, to, um, the medical community, residents, um, Grand Rounds, anything like that, I would love to, to speak and share more. And then also, um, My book, Keep Your Head Up, will be coming out on September 16th, and all of that will be updated on my website as well as Instagram, um, if you want to follow along for that.
Chrissie: I am so delighted that you have a book coming out, [00:47:00] and I'm just so grateful for the platforms that make it possible to, um, meet new friends like you, Tasha. I, um, just get sending you so many big, warm hugs.
Tasha: Thank you so much. I'm so glad we found each other.
Chrissie: Me too. And please give my best to Soraya. Thank you, Soraya, for consenting to have your story shared. Um, and let it be one of the many ripples of benefit that your being here offers the world. Big hug and kiss to Soraya.
Tasha: I will definitely share it with her.
Chrissie: All right. Thank you guys for listening. Thanks for being with us today. We can't wait to see you again next time.
Thank you so much for being here today with Dr. Tasha Faruqui and her [00:48:00] incredible family. I am in awe of their strength and the way they've opened their hearts to share such a vulnerable story. It is a gift and I'm so grateful for it.
I also feel so honored to have the opportunity to share these incredible individuals on this podcast. I hope we're helping foster more joy within our orbit. And I know we are. Next week, I get to have Dr. Kara Pepper with us. She's an internal medicine doc and coach who traded burnout and gray drinking for a micro practice and coaching practice that feel full of meaning, alignment, and delight for her. Her story is a game changer. Think joy over numbing, thriving over surviving. You won't want to miss it.
For anyone touched by their journeys. I want to share a space that's close to my heart, the Physician Coaching Summit. This is the premier gathering of physician coaches or physician coaches in training every year. And this year it's November 6th to 8th in carefree, Arizona at Savannah wellness resort and [00:49:00] spa, we had an incredible turnout for speaker submissions. Our deadline was this past Friday, February 28th. And now we're diving into these amazing proposals. So excited to see what will be co created for this amazing summit together. Tickets are on sale now at the physician coaching summit. com. Please consider joining us.
And a little note this podcast is meant to spark joy and inspiration, and as you know, I am a physician, but I'm not your physician, so nothing here should be seen as medical advice, and the opinions expressed are my own and those of my guests. I am a practicing physician and physician coach, though. So if you're feeling inspired, I'd love to support you on your journey. Reach out anytime. I'd love to chat about the joy reset, a four session coaching package, where you get to reconnect with your own spark. It's all about diving into what lights you up, shaking off what holds you back and crafting a creative plan to live forward with more clarity, confidence, and joy, check it out at joypointsolutions. com. And [00:50:00] may we all find the courage to pursue our own joy, just like Tasha and Kara.
Chrissie: I want to take a quick moment to acknowledge our incredible team. This podcast is produced by the amazing Kelsey Vaughn, post production and more handled by Alyssa Wilkes, and my steadfast friend and director of operations, Denise Crain. Our theme music is by Denys Kyshchuk cover photography by the talented Shelby Brakken and a special appreciation to my loyal champion and number one fan, Suzanne Sanchez. Thanks again for tuning in everyone. May we continue caring for ourselves, caring for others, and may we continue solving for joy. Take care. We'll see you next time.
