GRIEF AND LIGHT

When Love Asks You to Let Go: Parenting, Grief, and Surrender with Dr. Tasha Faruqui

• Nina Rodriguez • Season 4 • Episode 89

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A mother’s story of love, advocacy, and finding joy while parenting a child in hospice.

What happens when the life you imagined for your child suddenly changes forever?

For Dr. Tasha Faruqui, that question became her reality when her daughter, Soraya, was born with a rare and little-known genetic condition.

A doctor herself, Tasha thought she knew how to navigate the medical world. But nothing prepared her for the mix of love, fear, and relentless uncertainty that came with parenting a child whose life would look very different from what she’d dreamed.

In this week’s episode, Tasha — physician, advocate, and author of her debut book Keep Your Head Up: A Mother’s Story of Chasing Joy in the Face of Grief — opens up about what it means to grieve the child you imagined while fiercely loving the one in front of you.

We talk about how she’s learned to balance hope and surrender, the ways her other children have shaped her understanding of anticipatory grief, and how joy has become an act of resistance against the unfairness of it all.

Nina and Tasha explore:

  • What it means to grieve the ideal while embracing what is
  • How advocacy and agency intertwine in a child’s care
  • The quiet grief of siblings walking their own path beside medical complexity
  • Why hope and heartbreak can live side by side
  • How spirituality and creativity help her family keep going
  • Why joy isn’t found, it’s chosen, over and over again

If you’ve ever lived between grief and gratitude, this conversation will remind you you can hold both.

Guest: Tasha Faruqui, DO

Hosted by: Nina Rodriguez

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Life keeps showing you the irony of how close you can get to something, but it still may not come to fruition. But does that mean that you're a failure and you have no hope if you never get to treatment? And I disagree. Having information is a constant source of reevaluating what does hope mean? What does joy mean? What does hope mean for our family?

lost your loved one. Now what? Welcome to the Grief in Life podcast where we explore this new reality through grief-colored lenses. Openly, authentically, I'm your host Nina Rodriguez. Let's get started.

When you have a child, you end up creating grand plans for their lives without even meaning to. You develop images of them playing with friends, going to their first sleepover, graduating high school and college, and following their passions and purpose. While these may never come to fruition under any circumstances, when you have a special needs child, the differences between your imaginings and reality are magnified even more.

Very quickly you come to realize that the child you dreamed about, not on purpose and not on a conscious level, is not the child you have in front of you and it feels like death. You grieve who you thought you were, birthing while adjusting to the beautiful child you were given. There's no guidebook for how to do this. There's no charted path. It's a figure it out as you go kind of thing.

While we were chasing a diagnosis during Sarai's early years, I found myself in the difficult position of conducting healthy child visits for all my patients. I could get through those exams, but after I have to sit in my office and sob. It's not that I wasn't happy for those children, but I couldn't help grieving that my child wasn't going to reach the same milestones on the same timeline if ever. Most parents I've met, we have a lot in common when they find out we have a child the same age.

They assume this. While it's understandable, it couldn't be farther from the truth, making an already isolating situation even more so. Parents of typical kids are usually concerned about ear infections, teething, potty training, making the team, and getting into college. Meanwhile, families of special needs children are busy worrying about, will they ever walk? Will they ever verbally communicate? When will they die?

Who's going to care for them after I die? How will I set up funds to take care of them?

Thank you so much, Tasha, for sharing those powerful words from your book to open our conversation. And hello to our listeners. Welcome back to Grief and Light. If you're new here, my name is Nina and I am your host. And today's guest is Dr. Tasha Fruke. She's a physician and now author of her debut book. If you're watching on YouTube, I'm showing it right here. Keep Your Head Up, a Mother Story of Chasing Joy in the Face of Grief.

Her life and work have been deeply shaped by her daughter Soraya's rare genetic condition. And as a result, she has become a voice of both advocacy and hope for families of medically complex children and those with a limited life expectancy, as well as families experiencing anticipatory grief. Tasha, it is an absolute honor to have you here today. Welcome to Grief and Light.

Thank you so much for having me. very excited to share our story, tell you more about the book, and share my experience.

Well, first of all, congratulations on the debut of your beautiful book. I mean it aesthetically and also in reading it. I was commenting before we recorded that I read it in literally two days because I could not put it down. is as heartbreaking as it is heartwarming and it's absolutely beautiful. So congratulations and thank you for writing it.

Thank you.

And I also know that you share much of your story on social media at the Feruki Five, which I absolutely love because it gives us even more context and behind the scenes to the everyday struggles and joys of your journey, which I recently noticed that it became a USA Today bestseller. So congratulations on that too.

Thank you so much. was such a unexpected and humbling surprise to find out, but very excited to find that out.

very well deserved, honestly. So congratulations to that end as well. And the book centers your three beautiful daughters, but particularly your second daughter, Soraya, who's your middle child and who's the reason for much of why you wrote this book. And I would invite you to begin there. Who is Soraya for our listeners and what ripple effect has her life had changing the course of your life, knowing that's a big question, but just to give us some context of who she is.

and her journey.

Exactly. So thank you for starting with Soraya. She is really the reason and the push and the drive and the passion behind writing this book. Soraya is currently a 13-year-old teenager. She is described by those that know her as spunky, spirited, funny, trending. She loves getting her nails done. She loves makeup.

And she also has a life-limiting disease that is causing her to decline both physically as well as her breathing. And so really in thinking about Soraya and how she's created this ripple effect, it's really that her path has always been unexpected. And so with each twist and each turn was another

dream and another loss. And that has been the pattern of our life with her. And so when she was born, we knew that she had feeding difficulties. And so in that moment, just trying to realize, my child neurotypical? Will my child be healthy or is something going on? And then that fear that something is going on. And then when that fear becomes true, then it's like, okay, can this be fixed? And then when realizing that it probably can't be fixed, but

that they're doing well. And so there was a period of time between the ages of three to nine that I was doing really well. Her health was very stable. She was in therapies. We didn't quite know what her diagnosis was, but we knew that she was delayed in many ways. She had a feeding tube, but she was still gaining skills. She was still walking with assistants, talking. And then around age nine, something shifted. And with that shift, it's like your worst nightmare.

comes true, because I think the whole fear our entire time, let's try, is that she was going to die. And then in watching this shift in her health, we did realize that even though we didn't know what she had, we knew that her health was declining. And the best way that I oftentimes describe it is a disease that's similar to ALS, where you have the ability, but then slowly that ability goes away. So from walking, she's now

wheelchair-bound, talking, she's able to speak but her mouth is getting tired, eating, she can eat by mouth but her tongue gets weak, and even her fine motor is getting weaker. So all of these things are fading but the most critical one is her breathing muscles. And so she got started on a ventilator when she was nine and slowly the need for needing that ventilator has increased. And so really with her journey and our perspective and our

numerous grief, loss, change, pivots, however you want to describe it has really caused this ripple effect of me kind of changing and challenging everything that I ever thought was important. And the key of all of that is honestly isolation and just feeling so isolated every part of that. And I think what really hit me is

really come to terms with my privilege in that I'm a physician and not only am I a physician, but I'm a pediatrician. And so, so many people come to me as being an expert on children. And it's very humbling when you can't figure out your own child. That's like its own story in itself. But in thinking about if I'm feeling this lonely, how can other families do this? And that's really what pushed me to share.

as well as Soraya being completely verbal in her experience. while she has some delays, she has insight. And one of the things that she wants to do is share her experience so other people can learn from that. And so really, a lot of what I do is to honor her. And I don't think that I would have the courage to share if I didn't have her pushing me and the support of her sisters.

Thank you so much. And you just did a beautiful job of summarizing what has been decades of learning, unlearning, and adapting. Soraya, first of all, is a force that comes through in the book. She's amazing. I've seen her on social media. And despite all of these incredible, incredible challenges,

There is such a light, grief and light pun intended, but there's such a light emanating from her and she really wants to leave a mark in this world. And I love how you've supported her desire to do that in her own way. It comes through very clearly. So thank you for sharing. And you did mention because you're also a physician and you have these resources that I would say the average parent doesn't have when they're facing this type of challenge or just not even knowing the doctors didn't really have answers.

And let me ask you, do the doctors have any new answers since having published the book? And how have you walked that line between physician and mother? Because I noticed that coming through in the book that you knew what was happening most of the time medically, or at least being able to translate it and understand it whenever you got some information. But it was really your mother's intuition that led you to push a little bit further.

So as far as new information since the book has been published, yes. And I think one of the lessons in the book I talk about is surrendering. And so while we had kind of stopped doing additional testing, obviously, I say obvious because this is obvious as our family value, that if there was something new that didn't hurt Soraya or Soraya wanted to do it, we would be open to that.

and her testing had been exome and genome studies. And so what that is is a blood sample that the labs kind of reevaluate every few years. The reason why they reevaluate it is as more people get the testing done, there's actually more data that can be shared and more identified genes that could potentially be a culprit for anybody that has a rare disease.

And so this past June, we found out that at three separate labs where Soraya had been tested previously, that those results came through where that her gene that is causing her disease process had been identified. And this was based on numerous other individuals that were also looking for symptoms and a cause for their symptoms, I should say. And so that gene is called TAO.

And so, you know, your first question is, you know, one, you know, what is that like? I think that what is interesting, ironic, or maybe not, right? Maybe this is like what I feel like is a lesson in the universe is that as soon as I surrendered and kind of wasn't focused on finding the answer, the answer came. And what's interesting is does that answer change anything? And

because it's so new and we don't know a whole lot about it. And honestly, the 50 people in the world that have this impacted gene, Soraya's case is the most severe. And so what do we do about it? And I don't think we do anything different than what we're doing at this point until we get even more information. And I think there's a lesson in that too. You know, I've always sat and imagined.

what it would be like to find an answer. And in my mind, you find an answer and therefore you have a cure. And while I hope one day that will happen, I don't know if that will happen in the time that we have Soraya. I've had even the privilege of meeting some researchers that have helped with learning more about this gene. And what I'm finding is they are getting

close to finding a therapy. However, there are numerous barriers when it comes to research funding, as well as FDA approval. And I just, I just don't know if it will be here in time. And so there is a whole nother lesson in that, that I am, you know, going to be walking through. But for right now, it was a huge surprise that we could even identify a gene. And I do feel

you know, happy, relieved that Soraya in her lifetime gets to know what the gene is. She's always wondered. There's obviously some mixed feelings and emotions when there isn't a whole lot you can do about it at this point. As far as your other question regarding, you know, physician, mom, the identities that I have, and then also like what ultimately made me push.

And I think that if you look at me from the surface, it's easy to say it's the physician in me, but you're absolutely right in picking up on the things that really made me push, where that gut instinct that actually had nothing to do with my medical knowledge, because I couldn't, I couldn't validate what I was feeling with evidence. And so that is something that is really hard in medicine when you are trying to tell.

your care provider that something's going on, but even if I had the language, which the language didn't meet what I was feeling, it's hard for someone to lead with that and to go on a path when they didn't feel like there was a whole lot to go off of. And so what I really have learned is

While others may have viewed me as the physician is the one that got Sarai, the help and care that she needs, I really feel like it's the mother. And honestly, it's both. And I think that's another theme that really comes out in the book is I really struggled with trying to be one or the other in different situations. But all along, I was both. And all along, being both and kind of welcoming it all is what made me the best mother and what made me the best physician. I feel like if you talk to my patients,

I mean, I don't want to like discredit my medical knowledge, but I do feel like if they could name like the best three attributes about me, none of it have to do with my medical knowledge and all of it has to do with my approach and my communication and all of that has to do with Soraya.

Thank you so much for that. And for the record, yes, you were also named top doctor by Cincinnati Magazine in 2022, 24 and 25. So you are equally strong, your maternal instinct and your medical experience because of Soraya, because of everything you've had to navigate that you are able to attune so much better or differently with your current patients. And that comes through. And also your husband is

in the medical field as well, which adds another perspective because a lot of your decisions were made both from a very scientific and medical perspective and also your parents and you have to navigate that fine line. So even in the book when you had Soraya as your second child, when you were deciding whether not to have a third child considering all the layers that you had to navigate and the overwhelm and for context for some of the listeners.

It included nighttime feedings that would go on for hours, and these were multiple times a day. And it's just a regimen that would be taxing on anybody, much less somebody who perhaps doesn't have the medical understanding of what's happening to the fullness of that degree. You could tell how much it required from everybody. And yet you chose to give Soraya a sense of agency in her journey at one point, and that becomes clear with the

tracheostomy, hope I'm pronouncing that correctly. So in where do you balance or how did you balance that fine line between advocacy for your child and agency, giving her agency in her life?

Great, yes.

That is a wonderful question and thinking about advocacy and agency. think that when your child literally doesn't have a voice, and I say that from the sense of, three years, Soraya was nonverbal, and in that time, I didn't know if she would ever be able to speak, that as parents, you do the best that you can and you're making all the decisions. And some could even say, when your child is a child, you still need to make all of their decisions.

However, with Soraya, we had put in a decade at that point of every therapy, every subspecialty to give her a voice. And when it came to should she get a tracheostomy or not, I think the first thing that my husband and I had to do is really think about what would we want. And what was surprising for us, even as physicians, is we actually had differing opinions. And I think that that's like

very important conversations to have with your loved ones, I would assume that he would think like me, obviously in my ways, right? And you know, I think that he really thought that I would think like him. However, we had never really had that conversation on what we would want for each other, for ourselves, and then for our children. And so when we realized that we were thinking very differently about it, and then we met with Soraya's team without Soraya to make sure that we had all of the data.

we still felt like, okay, we could go either way. We could see the other person's perspective. And so what will we do with it now? And that's when we decided to have Soraya be a part. And we could not think of a better gift that one gave us a sense of no matter how we go, if we know that this is something that she would want.

then we have her blessing and that's leading in our opinion in the right way because what have we worked for? Initially, it was for this really long life and if that couldn't happen, which we have no control over, the things that we can control is for her to be able to make this decision and she has enough

knowledge and understanding of her own body that she can tell us. And so it may not be a very, you know, popular way to go when it comes to everybody's opinions on this matter, because yes, she's a kid. So how can the kid, you know, make this type of decision? We trusted that she understood the parts that she needed to. We trusted her medical team that they explained it in a way that she could understand.

And we trusted her and we wanted her to feel like she is the expert of her body. And I do really believe that. That didn't take much convincing for me. I know that she knows her body. And so I still look at that as the greatest gift. I also always tell her to this day that at any time we can re-discuss. And that conversation has come up multiple times. I think taking away the pressure of

This is your decision and this is your only time that you get to speak up is, would be too hard for her. But knowing that this can be a conversation that we revisit also gives her permission to change her mind, to explore without any judgment.

And for a little bit of context, if you could just explain why this was such an important decision and why the need for the doctors to explain it in such detail, because it wasn't an easy decision. And if you could just give some context around why.

Yes, and thinking about tracheostomy, and people get them for different reasons. Tracheostomy in general is essentially an opening in the neck to help breathe. And so while Soraya has weakened chest wall muscles that makes it hard for her to take big inhalations and exhalation, the ventilator allows her to do that, but it does so with like a face mask. And so in thinking about that progressing and her needing to be on the ventilator,

You know, at some point it will get to 24 hours a day. And so when that happens, and we're at 15 hours a day for a frame of reference, when that happens, it's really hard on your face to wear a mask for that long. And even if you change up where the pressure points are, it does cause some facial depression or some sores. And so many times when that happens, at least for Soraya's case, you're offered

tracheostomy so then that way you don't have to wear the face mask and you decrease any chance of facial depression or sores. The benefits of having the tracheostomy is you can be on a ventilator all day long. However, some of the things that we didn't know about a tracheostomy, even being physicians, is that you know initially when you put it in, at least for our pediatric hospitals, she would be in the hospital for a minimum of six weeks.

And that is because they have to make sure everything's going okay. They have to make sure it can get switched out on the first time under the hospital supervision. And then you also need to have 24-hour care. So that's like at all times when you're driving in a car, somebody else needs to be in there with her. There are risks of her not being able to speak the same. Her voice may be lost. It may not. It may sound different, but she wouldn't be able to swim anymore.

And it's not just six weeks and done. It's every so often you would have to go back to the hospital to get a scope, to look at the tracheostomy opening and then even switch things out. And so each time that would be a hospitalization. And so these were factors that we thought about. The other thing with Soraya, since we didn't know at that time what she had, and even with this information that we have right now, we knew that the tracheostomy doesn't necessarily cure her disease.

just targets her ability to breathe, which we did share with her, would have her lead a life that was longer. Because no matter how you flip it, if she's losing her ability to breathe, that will allow her to live physically longer. But the how would look different. And so that is a really tough thing, I think, one as a parent and two as an individual to make a decision like that. But for Soraya,

You know, the team really did well with bullet points and the key differences. And for her, what was important for her was her voice. And so, you know, here I am talking about her having a voice and literally that's what she didn't want any changes in. And she also knew it wasn't curative. And I think that was an important factor for her.

Thank you for explaining that a bit more because it was neither decision was easy or even notably better. They're both very difficult. One is life, potentially life extending and the other one isn't, but at what cost, right? And so it was a very hard decision, I would imagine. And I love that you gave her agency to make that call and give her the possibility to revisit as needed because I could imagine how hard it is to just face that reality.

And you mentioned before how this new doctor, I believe, who specializes in this gene, I actually saw that on social media. You recently met somebody who's specifically studying this particular gene, which, like you said, is something to be joyful and hopeful about. And also, you're balancing that with the surrender of what currently is and that you may not have the answers in time. So if you

could just take us a little bit deeper in that direction. How do you balance hope and surrender?

Hope in thinking about what that word means.

I think this is currently a challenge for me because I'm coming off of meeting with this scientist that is dedicating her life to learning everything about this gene that my daughter has a defect in and also has the medical, shouldn't say medical, because she's not a clinician, but she has the scientific knowledge to be able to have.

big improvements and strides in potentially curing Soraya. And I think in that moment, there is just this huge sense of overwhelm of the possibilities. And so there's the possibilities and there's the hope. And then there's this, my gosh, this is the miracle that I've been waiting for. And when can this be done? How long will that take? How much money do you have to fundraise to make that happen?

And so, you know, of course the first step is just sharing that this gene exists so that way there can be fundraising. But in thinking about what would I do to get her a cure is curing the hope. What does that do for the rest of the family? And is hope, does hope equate to cure? And actually I don't think that that's the case, but I will be honest that I am still navigating what all this means because

It's again, I've already set myself up to thinking that I'll never find a cure. And then now that this is right there, it's like life keeps showing you the irony of how close you can get to something, but it still may not come to fruition and that disappointment. And it's almost like, like you're getting so close. But does that mean that you're a failure and you have no hope if you never get to the treatment? And I disagree. And so I think that

Having information is a constant source of reevaluating what does hope mean, what does joy mean, what does hope mean for our family. And I do think that it means that one, it's okay to still have hope because we are getting closer, that's okay. But two, you can't bulldoze through life trying to catch something that could be.

detrimental when it comes to the collateral damage to get there. And I think that I've done that in my life. I think that I've gone after things thinking that that was going to bring me happiness and that was the hope that I was looking for when I think that hope can be found in smaller ways that are right in front of us and I don't want to miss those. so,

I think you do both, right? Just how we talk about grief and joy being in the same space. I think there's hope and there's reality. And I hope for the kids that come after Soraya, I hope that we can get closer to a cure. I have hope that that will happen. I have hope that I'll be a part of that. I have an intention of wanting to be a part of that. And also, I will have hope.

in the moments that I have with Soraya realizing that she may not be here in time of when treatment is available, and that's not losing hope. That's okay. And so I think all of that is true, but it gets a little foggy, it gets a little fuzzy, it gets a little challenging to tease that out. And I've been really sitting with that for the past couple of days. So it's still evolving, but that's where I am now.

Thank you for being willing to go there. I know it's not easy. And I thank you for the beautiful and honest way in which you phrased it, because oftentimes we think hope equals a cure, a very specific, ideal outcome. And life shows us sometimes otherwise, oftentimes otherwise. And that can look different depending on everybody's situation, right? And one thing that I want to bring context around for our listeners is

you and your family and even Soraya had already had these conversations of acceptance that she's going to pass, we don't know when, and this is just a very matter of fact thing prior to knowing that there are some answers on the way, right, and prior to understanding that this could turn around in an unexpected way. But for the listeners, just imagine for a second

having these conversations with your kids, with her sisters, she wanted to tell her siblings that part was very touching when she learned of the reality of the gravity of her situation. I'm talking about Soraya. One of the first things she wanted to do was tell her sisters. And as a sister who's lost a sibling, that was incredibly touching because that speaks to the sibling bond. So if you could delve into that side of it as a mother witnessing her daughter's

come to the acceptance and understanding of all of this and how each of them, which I find so fascinating because the birth order makes a difference in how everybody's processing everything. So how each one is processing and as a mother witnessing her daughters, if you could share a bit about that.

Absolutely, and the things that I share are things that all three of my girls know that I share and I have permission for. So thank you for even thinking of them and what they're willing to have me share. In the moment of Soraya sharing, she will honestly tell you the way that she would want it is that she wants to share everything, everything with her sisters. It is the most important thing in her life.

are her sisters, she considers her sisters her best friends, and she wants a forever connection with them. That has always been prevalent for her. And in that moment, even knowing when we were having the conversation as far as my husband and I and us answering the question that Soraya had of, is my health, will it mean that I have a shorter lifespan? And us answering honestly, I

did not, was not ready for her to say, my gosh, I have to tell my sisters. I didn't know it was going to be that soon. then, and I at that moment, I'm like, of course I should have thought of that. And so the oldest sister, Yasmin, had already known. And that wasn't necessarily by our choice. That was the older sibling always asking us, what do you know? I know you know more. Tell me the truth. She was begging for the truth.

all along the way. And so we would have some side conversations with her about where we thought things were going. And she was one that never stopped asking questions. So much so that she said, I still feel like you're hiding something from me. I want to go to the doctor's appointments. And so she was very much wanting to be in the know, but she was also very protective that she did not, and she would not be the one to share this with Soraya or her youngest sister, Lena. And so she kind of almost held that

I hate to say a secret, but at that time, we weren't quite sure how we were going to navigate telling Soraya when would be the right time, how to do that. And so she held that. For Lena, at that time, she was eight. We never said a word about life shortening. She always knew matter of fact things about what things were used for for Soraya as far as medical equipment, but we had never talked about it. She had never asked.

And that's kind of where we were. So in that moment when Soraya decided she was gonna tell her sisters, my husband and I were freaking out. Like, oh my gosh, like Lena knows nothing and will Yasmeen say I've always known? Like, how will this go? And so when Soraya shared, Yasmeen started just sobbing, but I give her just so much credit for not saying, know, sometimes siblings like, I knew way before you did. And so that is a very like natural kind of thing that.

That happens in siblings and even in our house and even with big things, but she didn't. She cried with Sarai and held her. And Lena's reaction was to us just shocking because hers was just like this slow one tear. And her response was, I've always known. And that was just so shocking to us because we had never said a word about anything, anybody life limiting.

let alone Soraya. so in asking her like, how did you, how did you know? And she said, I can tell that slowly she's becoming weaker. And I see when older people get older, they also get weaker and then they die. And I've seen that on TV. I've seen that people when they get older, they, they use wheelchairs, they use these things. And so I've known that this was going to happen. And so I think that gives our viewers and our listeners an idea of their different perspectives.

And also moving forward, I will say those roles and those relationships are still shifting. And so one thing that we have talked about and that is on social media is this idea of Soraya actively declining and both sisters really struggling with that. And I think that we need to normalize that siblings have feelings and we need to normalize that

They may not always be able to be an endless pot of support for the affected sibling when they are struggling themselves. And I will say both siblings are struggling very much in their own unique way, but they have both taken a little physical distance from Soraya because it's been too painful for them to see.

be in the same space as, as well as talk about. And so while we talk about everything and there's nothing off topic, the amount of time that an individual can talk about death and grief and loss, we're at different capacities. And so we're really trying to respect that, but their capacities are completely different. And we're trying to find a space where we can honor what everybody needs, realizing that we're all struggling.

Thank you for again, your honesty and delving there because it is so true. Just because you're from the same family experiencing the loss of the same person doesn't mean that everybody grieves the same. And that part of your book was so touching. was so, I could relate to it in the sense of yes, me and I'm the older sister. And there's a bit of hyper vigilance and are they telling me the full truth? Is there something they're hiding because they think I can't handle it? And as a sibling,

an older sibling, you are in a way your brother or sister's keeper. That's a role that's born the day your sibling is born. So when something is wrong with them, something's hurting them, you become like this automatic third sort of parent unintentionally. It's just a role we take on like I need to help my sibling and not being able to, I can imagine is incredibly painful, the anticipatory grief. Also, it was so interesting to hear about

how your youngest navigated that just knowing it was never something that she had to learn. It was like, no, this is the way it is. And I'm putting two and two together. Older people decline. This is similar to that. And I could imagine how incredibly painful witnessing the decline that is not easy. And I love that you respect their need to process it as they need. And I'm curious about your own processing as you're witnessing Soraya's decline as much or as little as you're comfortable sharing.

What has that been like with anticipatory grief and obviously navigating it on a daily basis?

Yes, for myself experiencing the anticipatory grief, think the hardest part is my innate want to be a planner. And so like this sounds superficial, but it's also so honest. Like I do, you know, think about when, how long do I have? And there's this pressure, pressure of will this be her last?

the last X, the last Y, okay, we're going on vacation, will this be the last birthday? Will this be the last? Because then there is this sense as a parent, like I have to make it the best. And sometimes when I'm learning now that, you you lose steam trying to make it for the best all the time for everybody. And you know, what does that even mean? And so I have recently tried to take that pressure off and

Just again, it goes back to this other idea of just meeting everybody where they're at. And if it ends up being an okay birthday, that's okay. At the end of the day, it's just a day. And so there's that. Then there's the physical decline is gut wrenching. I can't think of the two words that I think describe it is gut wrenching and unrelenting. Like it is constant.

And it's also like, I don't know if it's a way that I cope or maybe others can relate to this. If anybody else is watching a family member decline, it's almost like you allow yourself to be like, okay, I'm okay. But until she needs a wheelchair on every floor, that's when I'm going to lose it. Okay. Okay. So I'm okay. But

as soon as she loses neck support and we need a Hoyer lift for the bed, that's gonna be bad. And then it happens. And so it's almost like rungs that I'm like hanging onto in a ladder where I am doing it to myself and I, know, this at least, right? Like I hate the comment at least, cause then people are trying to comfort me like, at least she's not doing this or at least you have a husband. Think about all the single moms. At least she's...

verbal and can tell you what she wants. Like there are all of these at least, but I think I comfort myself with some of these at least and it's not serving me. So, you know, if you want to talk about things that have not been helpful, I think that's also important to share because I don't necessarily have the tools to go through this because I've never gone through it. And I don't know very many people who have gone through this process, but that is what it feels like. It is.

a constant and instead of trying to get rid of it, I have to work my way with holding it and still finding ways to not only live, but find joy and find joy because there's no but right. and it is very challenging. think the other part is realizing

and yeah.

while my girls are navigating it very differently, there is also this pressure as a parent to be able to hold space for everybody. And I don't know where or how, like where are the seminars on how to hold space? You would think as a physician, we learn how to hold space and I've never been taught that, but I am forced to do that. That is the hardest thing is

trying to hold space for everybody while still having your own process when we're talking about the same thing and feeling the same things and really trying to hold it together for the benefit of the family. At the end of the day, I'm sure very many parents feel this way, but your needs come last because like innately, you feel like as a parent, you have to be there for your kids first. It's a push pull.

I like to describe this feeling as a push-pull where it's hard and it's great because that same push-pull is what keeps me going. It's what made me write this book. It's what made me share. If I didn't have the siblings or Sarai, I wouldn't be sharing any of this. And honestly, I truly feel like if I didn't have the siblings, I wouldn't be sharing this. It is what makes me want to share so I can show them that there's power.

in our stories, there's power in our sharing that we can learn so much from each other, even if it's the things you should not do. So I'm not sure if I'm navigating it well or if I'm coping well, but I do think that there is so much to be said in sharing how we're doing things because there's no playbook for this.

Truly, and holding space is definitely an art, not necessarily a science. And we are oftentimes thrusted into this world of the both and and figuring it out as we go. And I would argue that you and your husband and your girls are doing the absolute best that you can within a very, very challenging circumstance. And one of those things is you in the book mention making room for joy.

amidst all of this and that when everybody learned of the severity of Saraius' case and accepted that, you know, there may not be as much time as we would like, something lifted and you said a phrase, I'm trying to remember it right now, but it was like, let's suck the joy out of life. I think it was.

That is the family motto is suck the joy out of life.

Tell us about that and the role that Make-A-Wish has played in sucking the joy out of life.

Yeah, so one thing that we oftentimes did between the siblings and the parents were, well, especially with my oldest, because we were talking about it more, is the unfairness, right? Like, we're the only family that's going through this. There's nobody else that's struggling like this. This is awful. How can I ever be happy? And so we started off saying things like,

okay, let's just acknowledge that this sucks. so we would use, know, it's like a suck is like a very like strong word. And we first started with saying embrace the suck. Like, let's just all acknowledge that this is awful. You're right. There could be so many people who are not going through this very exact same thing. We oftentimes tell our kids that everybody's struggling and if they're not struggling now that they will. But I think as a child, that's really hard to wrap your mind around because they're at a developmental stage of fair and unfair.

And so instead we just said, embrace the suck. And when we went on Make-A-Wish, Sarai's wish was to go to Hawaii. And at that time we had all of this medical equipment. We had all this G-tube supplies. The last thing that we would ever have the guts to do is travel on a plane, let alone travel as far as Hawaii. However, we had to fake it because we did not want to crush the Make-A-Wish plan of like, we don't know if this is going to work out.

So as we put on our face to be like, yeah, this is going to be amazing, know, Safi, my husband, and I were just terrified that this was going to be disaster with all the things we had to pack and, you know, just with her medical diagnoses and symptoms, like how we were going to manage. And once we got there, we just saw everybody just like have this relief. And we truly were having fun. And it wasn't just about Soraya. It was the whole family that was having fun.

that that trip allowed us to show us that we could find joy and that really just doing it anyways. So like whatever barriers we had created or whatever we had imagined, we just did it anyways. And we actively, we put a lot of effort to go and get that joy, but it was something that we couldn't wait for, that we had to make an intent and it is.

very active phrase, like suck the joy out of life. It's not wait for joy to come to you and be open to it. It's literally go out and go get it. And if you don't, you may never experience it if you wait for it. And so, I mean, I hope that it comes naturally for people, but I think when you're in the space of grief and it feels unrelenting and gut wrenching and honestly, sometimes just suffocating.

that you have to actively go and make that joy possible. And I think the other thing is just really acknowledging that finding joy doesn't negate or make the suck go away. It's still there, but it's also going to be there after you ride this wave when you're surfing, you know, like, so you might as well have fun. And I think also giving your permission, giving yourself permission to have fun.

and to find joy, that you don't have to be suffering all the time.

Absolutely. And that permission is crucial because it might not even be something that is evident to people going through a hardship, but we do have to give ourselves permission to feel that joy and like you said, go after it. You and your husband also have another motto that creative problem solving is your superpower. How have these two mind frames helped you navigate the hardest moments? The sucking the joy out of life and then the creative problem solving.

In thinking about the creative problem solving, goes really in line with sucking the joy out of life. There have been certain traditions that we had been doing. One is going to a summer house in Lake Michigan. And that house has a lot of stairs. And so one of the things as Soraya stopped being able to walk and go up and down stairs is the siblings and Soraya being like, we'll never be able to go back to the house.

And so thinking of that and finding ways to find modifications and having people come that are able to lift, both my husband and I go to a personal trainer to help lift her safely. So that way we can still do and be at certain places without needing adaptive equipment that you can't just bring into an Airbnb. So that has been.

some ways, other ways have been, you know, trying to figure out how we're going to get to a concert and like navigating the ADA and navigating, you know, bringing in her G-tube supplies. And, you know, we, we don't always ask for permission, but we always ask for creativity. Like this is what we're doing and we're going to, we don't have a sink. So I've got my own supply of water that we're going to just do this syringe feed here and it's going to happen.

And so I think those are the ways that we have been creative. Most of the time it has to do with doing something fun. And, you know, whatever we think is going to be a barrier is just kind of identifying that and just going in head first and knowing that we may be the first people or the first family or the first person to ever try this in order for us to experience it. And that's okay.

And thank you for that perspective, which you share throughout the book. And I encourage anybody, even if you don't have a medically complex child, this book is for everybody. This book is for if you're a physician, an educator, a parent, even a sibling, somebody going through a hardship because the way in which you, your husband, your family navigate the multitude of challenges is not just inspiring, but it gives us perspective to how we can help each other do life. It sure gave me some perspective.

And I want to be mindful of our time together here, but I do want to include this in the conversation about religion and spirituality and the roles those played throughout your journey and then include some of the beautiful serendipitous and almost like magical things that have been happening with Soraya and her sensing the other side of you.

say the aspect of religion and spirituality is one that I could have never imagined and how this would play a role in my life and thinking about where I was 20 years ago. With Soraya, you know, I will say that, you know, as I share this, this is not, you know, for for debate, for right or wrong, this is just our experience. I, you know, I grew up with

with a religion, I find great peace in the religion that we practice. I will say that having to watch somebody that you are so close to and you love so much slowly die does make you question everything. For our family, for my husband and I, that has been the case. There has been...

a lot of challenging thoughts, a lot of anger, a lot of questioning when it comes to religion due to the fact that we have this situation. And I think that religion has really helped us with our values. However, in line with just having something bigger than us, I think what I have found

is the beauty of all religions and all spirituality, where the lines that I had started with and how I viewed religion just became blurred. And that I truly feel at this point that everything is true. And so instead of who's right and who's wrong, I truly find it's all true and that there's truth in everything. And so

With that, think when you're desperate, many of my findings of spirituality really came from points of desperation where you are just looking for answers. You're looking for clarity. You just, mean, just so desperate, not just in saving Soraya, but in, can I endure anymore? Give me a sign that I'm not alone and just

I mean, that comes from a strong belief in something and that has always been there where there's just got to be something bigger than myself. I know what had started as a relationship at a bachelorette party was my first interaction with a psychic. And so that was over 25 years ago. And I mentioned talk about mama Mary and she's still a part of my life. And so she,

is a spiritual advisor and she reads tarot cards. And so there's, you know, a lot of people that might say, that's not real. That's not true. And, you know, honestly, I first went to her for entertainment for a bachelorette party and not only was she entertaining, but she really found some things about me through her gift that people in the room did not know. And that was my first experience with somebody who had.

some sort of connection. And what I love about her, she always says she works in light. And that was comforting for me. And soon after that, whenever I would come to a point in my life where I was at an intersection or I needed some direction, I would make an appointment with Mama Mary. And so for the past several years, she has been a part of my journey and a part of my life. And thinking about

other people and there have been other people that have just been at the right time at the right place. And so, you know, another person that, you know, I mentioned in the book is a past life psychic and he is wonderful. He's listed in my acknowledgements and I'm not afraid to share Ainsley. I had read his books and

in my journey of grief, they just really resonated with me. It's just, you know, books about spirit guides, our souls, how we're connected. And it gave me a lot of comfort in thinking about why am I losing Soraya? Why me? And taking the me out of it and just really, again, it helped me surrender. And so one of the things that Ainsley offers is

one-on-one sessions and I was desperate. I wanted some clarity and I wanted to know how I could cope. And what he shared with me was just beautiful advice, all in light, all in love. And one of the things that he said is, you need to write a book. And it was one of those things that was already in the back of my mind, but I already had so much self-doubt.

I don't have the time. My story isn't worth it. Like, who's going to learn from my mistakes? And also this voice of what will people think? You know, what will my patients think? What will my family think? All of these barriers. But hearing him say the potential impact and as well as hearing Soraya say what she wants, which was also, I think the other part is there was so much of what he said.

is what Soraya wanted. And she actually said, Mom, I want you to write books. I want people to know how to treat people with disabilities. I want people to know about our journey. That all of that came in in line kind of simultaneously for me that I couldn't ignore it anymore. there's, know, there's wording and phrase in the book that talk about

When you try to ignore something from the universe that is trying to push you, you can only ignore it for so long until it smacks you in the face. And so I'm sure that there was inklings of this path that I had talked myself out of from a logical perspective. But it's the desperation, the love, the loss that just had me go for it. And there's also a part of I have nothing else to lose. You take away my kids, you take away people I love.

I have nothing else. I have nothing else and for that I fear nothing else. And so that has also allowed me to share. I think intent really matters. And for me, I really wanted to make sure that the intent of why I'm sharing is very clear. I think it's really hard to be so vulnerable in public. And know, maybe it's perceived of, you know, for fame, for fortune and for anybody that, you know, knows that like.

There isn't necessarily fortune in book writing and there's also not necessarily fortune in being a pediatrician. so, and thinking about my why, I think that is very important. For Soraya, with her being verbal, there have been very many times where she has shown a connection to the other side. And I will say that that

connection is just getting stronger. And that doesn't mean I know what that means, but I'm only sharing in case there's anybody else listening that can relate that I don't know. Some people describe this as a veil. I don't know if that veil is getting thinner, but Soraya will tell you that she has a connection and that her connection is getting stronger. And so there are times where we are feeling very low, very desperate.

and very sad that she'll say words that I don't know how she knows, but she does. mean, there are times where she has said like, you mom are my savior. You're the reason why I'm here. And she's never been taught the word savior. Like that's been something that she's never said before. There have been other messages that have come through when it comes to people that have already crossed that are near and dear to my heart that she's never met.

but she's able to describe. And so that has been just a gift of comfort, not only for me, but for our family and for Soraya.

Thank you for sharing that. And I resonate with so much of everything you said. Grief cracks us open in expected and so many unexpected ways. Religion and spirituality can coexist, in my opinion. Religion in our early days, for example, serves such a wonderful foundation of stability because my grandfather had rituals based on the religion to kind of keep us together when it felt like the foundation had been, you know, ripped from underneath our feet.

And also, spirituality gave me perspective of what happens in life after life. And particularly in my case, it was stories of near-death experiences. I'd never heard of that before. And suddenly I'm hearing this and I'm like, wait, what? There's people that are connected and this happens and there's this whole other world. And at first, my logical mind wanted to get the information as to why and what exactly is this. Is it a hallucination or not?

And through time I learned that does not matter. Does it feel like connection? Does it feel like love? Does it feel like something that is supportive to you in that moment? Is it harming anybody? No? Okay, then go with it. And I don't have the science, but I really like that you included that in the book because it is something people do experience and that connection can be beautiful, powerful. And I do believe that we're connected to others on the other side, one way or another.

And I sure hope so because, you know, I lost my brother. I hope I see him again. I really, really do. I trust I will. So thank you for including that. And closing out here, what would you tell a parent learning of their child's diagnosis or not having answers? What would you say to them as physician and or a mother?

I think honestly the first and foremost most important thing to hear is that you're not alone. This feeling of isolation is the worst and I think the most prominent feeling. And especially when it comes to a parent relationship with a child and I think a lot of that has to do with our society in how we portray parenting. I think there's a lot of issues with that.

as it is and like just being a pediatrician and seeing how much social media plays a role in you know what you're doing right or what you're doing wrong and like there's so much comparison and so when it comes to your child having a rare disease or a life-limiting disease and then constantly feeling like you're being compared to these other families that have quote-unquote perfect children, perfect parenting, I think it's so self-destructive.

that the first thing I want to say is that you're not alone and that I promise you that no parent is perfect and that there are other people struggling and that's not to make make it great that there are other people struggling but it's to really show that we can really be there for each other so it's okay to look at different groups to join support groups to get mental health help so I think that would be

My other take-home point would be the importance of mental health. And having the ability to talk about it really, really helps. And I will say that many people will say, I have friends and family that are really close. I will say grief really changes relationships. And then that can be like a whole other podcast. And

Sometimes even saying grief makes people uncomfortable, people that you love and love you, but just can't talk about it. And so I really think that if you're going through something like this, please, I beg you, I beg you to have a therapist. That is something that I think is just instrumental in the process because we have witnessed just so many changes and shifts, not only within ourselves.

but the dynamics of the relationship of the people around us. And that has been almost as significant as losing parts of Soraya.

Another great point because there are secondary losses even with anticipatory grief and one of the most shocking is the way that friends and family tend not to show up when we need them the most and that is a grief in and of itself, absolutely. And as far as therapists, we have touched on that in previous episodes in the Grief and Light podcast and finding a grief informed therapist is also very important because not everybody's trained on grief and may or may not resonate with your situation.

So thank you so much, Tasha. Where can people find the book and what is next? I know you have a book tour coming up, so tell us where they can find more information and connect with you, please.

Yes. So my book, Keep Your Head Up, can be found anywhere where books are sold. It's currently on Amazon. It's at Barnes & Noble's website, and it is also at local bookstores, as well as Books-A-Million online. You can find more information about me and my book tour, which is happening now at my website, which is tachafuruki.com. And then if you want to stay on the up and up and what's happening in our daily life,

please follow us @thefaruqui5 It is very much a inside look and a very up-to-date on what's happening.

Thank you. And I will link all of that in the show notes. Please do follow the Farooqi Five on Instagram. It is heartwarming and I have the privilege of being a part of everything that you share. So thank you for all that you share. Final question is what would Tasha today say to Tasha when Soraya was born?

That is such a good question.

Natasha today would say.

No matter what the outcome, it will be okay.

Thank you so much, Tasha. It has been an absolute honor. That's it for today's episode. Be sure to subscribe to the Grief and Light podcast. I'd also love to connect with you and hear your thoughts and your stories. Feel free to share them with me via my Instagram page at griefandlight. Or you can also visit griefandlight.com for more information and updates. Thank you so much for being here, for being you. And always remember, you are not alone.

Thank you.


People on this episode

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Nina Rodriguez

Host
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Dr. Tasha Faruqui

Guest