Episode Description

Content Warning: This episode discusses grief, childhood cancer and the loss of a child. Support is available at Red Nose Grief & Loss and Hope Bereavement Care.

Our guest today is Heba Shaheed. Heba is a Pelvic Floor expert, and in her professional practice of Physiotherapy supports women living with female related pain issues and pre/post-natal care.

In 2018, Heba’s young daughter was diagnosed with a rare form of cancer, and sadly passed away in May 2022. Heba’s story details the surprising lessons of resilience she learned about her self, while navigating grief.

You can follow Heba’s work on Instagram

Listen to Stories of Community Resilience on Omny and all major streaming services.

Transcript

This Transcript is automatically generated and may contain errors.

Aamon Sayed 

My name is Aamon Sayed and welcome to another episode of the Stories of Community Resilience Podcast by 3ZZZ. On this episode of the show, I’ll be speaking with Heba about her experience of resilience and in particular, childhood cancer and child loss. Before I start, I want to acknowledge the traditional owners of the land and recognize that as we capture stories here today, the indigenous people have been storytelling on this land for thousands of years. It always was and always will be Aboriginal land. Welcome, Heba. 

Heba Shaheed 

Thank you, Aamon, for having me. I’m really excited. 

Aamon Sayed 

Um, it’s always amazing to have you apart of the projects. You always have so much insight and and things to say and stories to share. Um, so I’m, I’m excited as well. I want to, um, give you a specific thank you for like, willing to open up and share about such a sensitive topic. Um, I think that a lot of people may not be like may have had similar experiences but are not necessarily willing to like open up and, and have things on public record and stuff like that. So I just wanted to give you a special thank you and special appreciation for that. Um, I wanted to begin, um, around the time of your daughter’s diagnosis and like, what that experience was like and like your responses to that and yeah, if we can start around there. 

Heba Shaheed 

Yeah. So Ruqaya is and will always be my only child. She was born in 2017 on March 8th, International Women’s Day. Um, and unfortunately at the age of 16 months old, in August of 2018,she was diagnosed with a very rare and aggressive form of childhood cancer at stage four called Rhabdomyosarcoma, which is essentially solid cell tumors that grow in the soft tissue of the body. So my daughter’s cancer started on her female sexual organ on her clitoris, and, um, then it spread into the lymph nodes that come out of the clitoris. So her pelvic lymph nodes, her sacral lymph nodes. And then over the course of her very short life, um, she passed away just over a year ago in May 2022. Um, she, um, she. So she had. So the cancer had spread into the lymph nodes all the way up to her neck by that point. Um, and yeah, she passed away last year. 

Aamon Sayed 

That’s obviously a very tough experience to go through. And so if like for yourself, what were some of the the thoughts like and the feelings and what did that bring up for you? Um, like as a mother, seeing at such a young age, like your daughter going through this diagnosis. 

Heba Shaheed 

When she was first diagnosed in 2018, it was a massive shock. Um, but me being a very, like strong person and somebody who kind of. I’m a survivor. Um. I didn’t really know how to deal with it in the sense of emotionally. And I do. I do realize that I am someone who cuts off emotionally pretty easily. So I just kind of went into, um, you know, goal orientation mode, like, what do I need to do to get my daughter better? What do I need to do to protect my daughter? What do I need to do to give my daughter the best possible chance 

she has of life? And if she does have a short life, how do I give her the best possible, happy, joyful, positive life with as minimal pain as possible? So I just went straight into basically goal orientated mode. Um, my style of motherhood and parenting has always been an empowering type of parenting, giving autonomy to my daughter as much as possible, trying to protect her from anyone who disempowered her or who threatened her safety, emotional safety, as well as her physical safety. Um. So. I guess. Yeah. Like from an emotional point of view, I kind of just switched off and just went into How am I going to get my daughter better? I didn’t cry. So when the oncologist came to see me and told me that my daughter had cancer, that after we did the biopsy, she had cancer. I just was like, okay, so what do we do now? You know, it wasn’t like, Oh, I’m going to break down and, you know, have, um, you know, just lose myself and all that.

Heba Shaheed 

And I think I persisted in that mode for quite a long time. Um, and really only started to become emotionally aware of how much tragedy had happened to me really, only after she passed away. And I now, in retrospect, I see. I see how over the last year, how I’ve transformed myself. Like I, I went through a very low point in my life where I had severe depression. Um, and then I kind of just came back out of it because I realized, like, I’m not a depressed person. Like I’m a person that, um, you know, I’m always thinking of the positive in life and taking the learning lessons from what happens to me and, and then using that to create something good, you know, And I continue to be resilient in the face of all of this adversity. So it’s kind of interesting to look back at my behaviour and my emotional reactions now that I’m back in my kind of, um, more internal, internally stable and emotionally stable self. If I think back, yeah, I went, I pretty much dissociated my entire emotional state and just yeah, but yeah, there was definitely a lot of upheaval, emotional upheaval internally, and it definitely helped me become more emotionally intelligent in a sense of becoming more aware of my own emotions and how, like I react very differently to most people. 

Aamon Sayed 

How did you find that? The journey from diagnosis up until Ruqaya’s passing. How did you feel like you changed? Um, uh, did growth happen in yourself and what was that like? Uh. You know, after the first shock of the diagnosis had had passed like that journey, like the journey of like the treatment and like. Yeah, like, what are some of the changes, I guess, over that period of time did you notice within yourself? 

Heba Shaheed 

Okay. So I guess we have to take a step back and look at the entire motherhood journey. So giving birth to Ruqaya changed me drastically as well. While I was pregnant, I was very much a softie. I was very like, you know, naive. And I was still like, um, you know, like I. I realized that. I just was in denial about, like a lot of cruelty in the world. And I was always, you know, I was always been a healer. So in my previous life, I was a physiotherapist with a special interest in women’s health and pelvic floor. So my target market were prenatal and postnatal women and women with female related pain and so on. So menstrual pain, sexual pain and so on. And I was in a healing sort of role. So I spent a lot of my life, which is about 13 to 14 years, being this like giving healing energy, you know. And in my pregnancy I persisted with that and I really enjoyed my pregnancy. I found that it was a very beautiful experience. I liked the idea of becoming a mother. However, after Ruqaya was born, there was a lot of shock and a lot of, um. Turning inside out of me, you know, And I realized a lot of things. And I think a lot of new mothers have this experience because in essence, a woman is reborn when she gives birth. You’re reborn. Everything restarts, you know? So, um, I started to realize a lot of things, like, obviously your brain changes a lot as well when you’re pregnant and after you give birth. 

Heba Shaheed 

And I started to become more in touch with my own emotions and how I had been such a giver my entire life that I was constantly aware of everybody else’s emotions and always trying to, like, mediate and make sure everyone else is happy and make sure everyone else is taken care of. But what I realized after I gave birth that I had no support, no help, no, no, no emotional safety, no care like zero, absolutely zero. There’s a handful of people here and there. But you know, in limited, very, very small and limited doses. Right. Um, and then that postnatal journey. So from, from when Ruqaya was born until 16 months when she was diagnosed, I was pretty much in pretty severe postnatal depression and also like awareness of like how little I was cared for and nurtured. And I think a lot of those emotions were coming out as well. Um, my daughter had a lot of separation anxiety with me. She had a lot of, she was very distressed all the time, always crying and so on. So when she was diagnosed with cancer, um, that only enhanced what I was feeling. Like I realized how alone I really was like how unsupported and alone I was. Um, I pretty much did everything when it came to my daughter. Some people might say that they, you know, helped and that they did things, but the reality of the situation was that I was pretty much her primary care provider, her primary, you know, primary provider, primary protector, primary, nurturer, primary, everything, right. 

Heba Shaheed 

I did it all alone and I guess, um. Because I spent so much time alone, it allowed me to start to become more aware of my inner self, you know? And I loved being a mother, like, I absolutely loved it. And, you know, even though my daughter had cancer for four years of her life, I still look back on mothering her as a beautiful experience. You know, like I when I look back, most of the things I remember and that I focus on are actually the positive things. Um, there are a lot of negative things that happen, and I would say probably the negative occurrences far outweigh the positive occurrences, but my mind doesn’t allow me to live in that. I’m not a person who lives in the past in that negative sort of sense. It’s like, all right, the negative things happened and now I’m, I’m just taking the lessons from it and I’m focusing on the positive. So whenever I think back and I if I if I see a photo, if I see a photo of the past and it’s reflective of a negative experience, my mind just automatically doesn’t want to know it, just like kind of eradicates it. But if it’s a positive memory, I feel alive and I feel like I want to keep looking at that photo and I want to reminisce and so on. But when it’s a negative thing, it’s like there’s a part of me that just doesn’t want just doesn’t want to relive that again because it’s like, what’s the point? I’ve already derived the lesson from it, you know? So I would say I did have a massive amount of growth, massive amount of growth in terms of learning about my own emotions, learning about my own needs, right? Because I was a person that wasn’t really aware of my own needs, you know, my own wants and needs.

Heba Shaheed 

I was very aware of what everybody else wanted and needed, and I was very, um, adept and skilled at delivering and executing on everybody else’s needs and wants that everyone around me felt amazing, supported, whatever. But then that journey taught me more about my own wants and needs. Being with Ruqaya, being her mother and so on. And slowly, slowly I started to pull away from giving to others. My primary focus was only giving to my daughter 100%, only giving to my daughter, and then learning about how to give to myself and have more boundaries for myself and how to, you know, make sure that my emotional needs weren’t trampled on. And, um, and then so, so there was definitely a huge shift which because most people were used to me being such a giver, it was probably quite confronting for them, like what happened to her, Like she’s changed whatever, you know? But I don’t look at it as a bad thing. I feel like change is important. You should be changing. We shouldn’t be staying the same. 

Heba Shaheed 

We should be evolving. We should be growing right. We should be becoming more resilient. And the thing is getting closer to yourself, healing yourself, finding yourself, being your authentic self. Right? When you feel your own self up, you don’t burn out as much. Previous to that, I was burning out almost every few months and then my burn outs would last for many, many months, you know. But now I look at myself and I’m like, I’m not burning out as much as I used to because I’m filling my own cup, you know? And then when you’re not burning out because you’re filling your own cup, you can actually give more. And the thing is, you don’t need to give in a sense of like you’re throwing everything out of your tank. It’s more like you can just be a role model. You can be an inspiration. You can show from the things that you do, the way that you speak, the way that you behave, how resilient you are, how courageous you are, how compassionate you are, how authentic you are. And then when people see that they can derive their own lessons from it, take their own inspiration from it, and they can adapt it to their own life however way they see fit. I’ve kind of moved away from the thing of like giving and telling people what to do and what they need to do to just doing what I need to do for myself. And then people can extrapolate from that for themselves while. 

Aamon Sayed 

In their own space and in their own time. It’s almost like, uh, they’ll do that when they feel ready to learn that lesson or take it on 100%. 

Heba Shaheed 

I don’t feel like, No, you should be doing this now. This is how you do it. You need to be doing right now. Right now. like, you know, not forcing it on people, but like, almost like spoon feeding them. I don’t feel like I need to spoon feed anymore, you know, like explain how people should behave. You know, it’s just like, I’m just going to be myself. And if you see me as a role model or you see me as an inspiration, that’s for you. But it’s not for me. Like, my goal here isn’t to inspire. Like it’s not my goal. It’s just to be the best version of myself. And, you know, if God allows somebody else to be inspired by it, then great. But really, it’s more about just being more confident in myself. Um, so yeah, I definitely did grow a ton. And you know, it’s so interesting because my daughter is the most authentic person you’ll ever meet. Extremely resilient. I mean, the kid went through four years of stage four cancer and like massive amounts of procedures, you know, violation of her private parts and so on, you know, a lot of emotional upheaval, you know, And then even because, you know, both her parents got divorced, you know, that exchange time, like going from one house to another. Um, you know, the she, she went through so much. 

Heba Shaheed 

She was an extremely resilient child. But you never noticed, like, you didn’t know if you looked at her, you didn’t know that she’s a kid that spent the most most of her life in hospital, you know, And she was so smart, so, so courageous because she did all of these you know, she went through all of these hardships. Right. And yet in the moment, she would scream and cry and complain and not want to do it. But then she would calm herself. She would compose herself and she’d be like, “when I’m ready to do it, I will do it. I’m not ready yet. Mummy told them that I’m not ready.” Mhm. And then we wait and I’m like a lot of the time the nursing stuff and all that were trying to rush her to do procedures but I was like no you’re going to wait until she’s ready. She said she’s not ready, just wait. Like oh we got to go, gotta go. Got other clients, other patients, whatever. I’m like, I’m like, Well, I’m going to I’m going to listen to my daughter. I’m going to give her autonomy. She has a voice here. Okay? Just because she’s three or 4 or 5 doesn’t mean that we’re going to trample on her, on her voice, you know? So like, she taught me a lot, you know, And she was so authentic. She would just say it like it is. 

Heba Shaheed 

She didn’t do this whole people pleasing thing. Like, I’m like, I spent a great deal of my life 30 plus years being a people pleaser. Right. And just because I’m a strong person who is direct doesn’t mean that I wasn’t a people pleaser. I know like, I spent a lot of my life being a people pleaser. Um, but she taught me, like, to let go of that and to have boundaries. And she had so much boundaries she didn’t want to talk to you. Like, I don’t want to talk to you right now. Please don’t talk to me. If she wanted alone time, she would be like, I’m tired. Like she’d be playing with all her friends. Like, okay, everyone stop. I’m tired. I’m going to go rest for a bit and she should go. She would rest. And then when she’s ready, she’ll come. She’s like, okay, I’m ready to play again. Like, she had this amazing ability to just stand firm in her own self. Subhanallah. It was crazy. Like, I just thought, wow, this this child is just so amazing. And then she was always kind. You know, she, she, she, she never she never she never raised her voice. She didn’t swear. She wasn’t rude. She was just very direct. But she was always kind in the way that she spoke, you know? And yeah, I just I learnt so much from her.

Heba Shaheed 

And like she would even say to a grown adult, she’d be like, you know, she was so confident about her life, she would say things like, you know, some children don’t live to be adults. Some children stay children forever and they spend. They spend the entire childhood in Paradise as children. You know, she just was so intelligent. And she reminded me of like, how I used to be when I was little. You know, and it’s so interesting because I feel like she’s she came to heal me and to remind me of who I really am and to bring back who I really am. Like I was never a pushover. But for some reason, for ten years, I became a pushover. I let people just walk all over me and take advantage of me. And just because I wanted to keep the peace, you know? And so there were so many learning lessons that I had from being her mother. And I feel like God sent her to me to remind me who I am and to take the learning lessons and, you know, build it into something for myself. And then that can then impact others as well. So, yeah, she left a legacy in that sense as well, like through through the way that she behaved and how she was towards me and then how I am towards others, you know? 

Aamon Sayed 

Yeah, but thank you so much for sharing that inspirational story. Sounds like a firecracker. She sounds like a. A bundle of like life lessons that you seem to be drawing from. And I think you’ve given us enough today for us to learn from her as well. And again, I just wanted to thank you for sharing such a vulnerable story, and I appreciate your time. 

Heba Shaheed 

Thank you, Aamon for having me. 

END OF TRANSCRIPT
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