The Gift of Life: Organ Donation, Food Allergy Awareness, Child Loss & Legacy with Maryam De Groef

Maryam De Groef on child and sibling loss, organ donation, food allergy awareness, faith, and the many ways her daughter, Zeynah, lives on.

In this heartfelt and powerful episode of the Grief and Light podcast, host Nina Rodriguez speaks with grief educator, somatic practitioner, and mother Maryam De Groef about the unimaginable: the sudden loss of her 9-year-old daughter, Zeynah, to an anaphylactic reaction caused by a severe food allergy in 2023.

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Maryam shares the deeply personal journey of navigating profound grief, witnessing her surviving child process sibling loss, and the life-affirming decision her family made opting for organ donation—a decision that has saved and transformed the lives of others, with ripple effects that may span generations.

Together, they explore the urgent need for greater awareness around food allergies and anaphylaxis, especially in children, as well as the power of cultural sensitivity in medical care, and the often-overlooked grief of siblings left behind. 

Maryam also speaks to the role of faith, nervous system healing, and her work guiding others through trauma with somatic tools like breathwork, reiki, grounding, and emotional regulation practices.

This conversation is a tender and inspiring reminder that legacy isn’t just what we leave behind, it’s also what we give forward.

Key Takeaways:

• Food allergies can be fatal—awareness, preparedness, and education save lives.
• Grief affects the whole family, including siblings, who often go unseen in their pain.
• Organ donation is an act of profound love, capable of impacting dozens of lives now and in the future.
• Cultural and spiritual sensitivity in how loss is communicated matters deeply in trauma-informed care.
• Embodied healing practices like breathwork, grounding, and nervous system regulation, can offer relief and resilience through overwhelming grief.
• Legacy can ripple for generations, transforming pain into purpose and continued life.

Grief Support Resources for the Road:

1. Grief Tending Toolkit
2. Access our online community

Mentioned in this episode:

• Trillium Gift of Life Network
• Red Sneakers for Oakley
• Natasha Allergy Research Foundation

Guest: Maryam de Groef

• Instagram: @maryamdegroef
• Personal website

Hosted by: Nina Rodriguez

• Creator of Grief and Light, Grief Guide
• Learn more: griefandlight.com
• Instagram: @griefandlight

Subscribe for more conversations that explore grief, healing, and what it means to be human.

Transcript

When I really thought about organ donation and why people say no, one of the main reasons I've heard often come up is like this desecration of the body. And to me, the sanctity of human life outweighs that if you're cremated or if you're buried, those organs are not going to be used. It's a really selfless thing to do because you are giving something so big to somebody who is.

at end of their life. And I would just really encourage people to think about the ripple effect of that. The people that Zayn are saving, their families are going to experience the love and joy of that person. For the children that Zayn are saved, they're going to go on to become whatever they become. They might have children and any good that someone does that benefits you and so...

That's all for her and any good that they do is a blessing for Zaina. That doing of good aspect and that faith aspect, but then there's like the ripple effect of maybe 10 generations come from your one organ. It's just a double-edged sword, right? Because you're losing something and someone is gaining something. And I think for me, it well, I'm losing Zaina no matter what. And so...

If someone can benefit from her and they can live a happy and healthy and long life, then there's no way that I can say no to that.

You just 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. Welcome back to the Grief in Life podcast. My name is Nina Rodriguez and today I am joined by Miriam de Groef, a grief educator, nervous system regulation facilitator, integrative health coach, and founder of Refuge of the Heart.

and restore and rebalance. In 2023, Maryam's life was forever changed with the sudden loss of her nine-year-old daughter, Zaina, due to a severe food allergy. In the midst of grief, as a family, they made the life-giving decision to donate Zaina's organs, a choice that continues to ripple outward in powerful and healing ways. Maryam leads retreats, workshops, and keynotes centered on loss, regulation, and healing through the body.

And in fall of this year, as this podcast is being recorded in 2025, she will begin her PhD focused on memory, legacy, and faith in the context of pediatric organ donation. Miriam, welcome to the Grief in Life podcast.

Thank you, thank you for having me.

It's an absolute honor. for the listeners and anybody watching, I connected with Miriam through the power of social media. And it has been so beautiful to, and I say beautiful in the context of grief, right, to witness how you show up in the world, how you share your love for Zaina and Zaina's life and Zaina's sister. And, you know, I can obviously connect with my loss in terms of sibling loss, but I just wanted to thank you for having this moment of conversation and sharing your story and Zaina's story.

Me too. Thank you so much for having me. And the power of social media has been such an amazing tool in this journey, as I'm sure you've experienced too, just bringing like-minded individuals together and finding a space for grief healing.

Absolutely. And so much of this journey is because of the loss and life of Zaina. So who was she and who does she continue to be today in the context of life after loss?

So Zaina is my firstborn. She was conceived after I had my own health journey of thyroid cancer. So I was already told that it would be difficult if not impossible to conceive. I've always called her my miracle baby, which is just, again, like the journey of things when you look back in hindsight at certain things that happen in your life.

Like, as I said, I've always called her my miracle and then she became a miracle for other people and other families. So I just, it's such a beautiful like ball circle thing. she was a healthy baby and then around the age of 18 months, she had a severe reaction to a vaccine. and after that she had a lot of health issues, allergies and respiratory issues. And so we went on this lifelong journey of.

trying to heal her body and find ways to help her thrive. through that journey is why I became an integrative nutrition health coach because I was sent off with a small baby and told all the things she couldn't eat, but not what she could eat. And for me, was like, how am I going to help this child survive and thrive? I can't cut out all these food groups and her still be healthy. And so I did a deep dive into nutrition and

She was also allergic to scents and laundry detergent. And so it was like a full life overhaul of everything from top to bottom and inside and out. We were managing her allergies really well. She was issued an EpiPen as a precaution and we were told how to use it and under which circumstances we were to use it. Zaina was born in Belgium, my husband's Belgian, I'm British. And we were living in Belgium for eight years before we moved to Canada, which is where we live now.

Um, so we moved here at the end of 2019 and we were in a different city and we lived there through the whole of COVID. So we moved in right as COVID here and the three years we were all together. And again, at the time it was really hard. And in hindsight, me, we got to create some beautiful, amazing memories. get, we got to go out and explore.

nature by ourselves, like just the four of us, myself, my husband and Zainab and Ziva. And I feel like that time has really helped solidify their relationship as well as sisters. So I'm very grateful for that. And I will say it was really hard, but I'm really grateful now in hindsight that we had that time together. So we spent those three years, really tiny apartment, and then we bought our home in London, Ontario, which is funny because I'm from...

Big L London and now I keep saying I'm in the fake London, but then people get really upset. So I'm like, I'm in the little London. So we moved here end of February, 2023, and we were really excited to start a new chapter. We had bought this 120 year old home, beautiful garden, a big back garden. I'm looking at a big back garden. This is a very nice space to be as a family. it was

the beginning of what I thought would be a really amazing time for us. And Ziva celebrated her seventh birthday a week after we moved in. And then unfortunately, week later, Zina had a severe anaphylactic shock, which exacerbated an asthma attack as well. So she ended up, we ended up administering her EpiPen.

And it escalated really quickly. And we, was on the phone to 911 when we administered the EpiPen and she ended up going into a cardiac arrest and Newell's had to begin CPR while we waited for first responders to arrive. And again, like we didn't plan this, but we moved right around the corner from a fire station. So, mean, lucky for us, they arrived within minutes, I think.

five to six minutes they were here, which was amazing. And the first responders, my heart just goes out to them because they did everything that they needed to do to get her to the hospital. And we had an amazing paramedic who I later found out had just taken part in a study on the optimal timing for

pediatric intubation. Because of her quick thinking, she was able to do that in the appropriate timing and get Zaina to the hospital, which meant that she didn't die at home, which was good thing because Ziva and Zaina already said this house was haunted. And Ziva already says that Zaina is going to haunt her. We have a big joke about it now. But anyway, that it just meant that she didn't die on the rug on our floor.

the new living room. So she ended up going to the children's hospital. Again, we moved really close to one of the biggest hospitals in London. It's a teaching hospital and they have amazing staff as well. And she ended up in the pediatric critical care unit there. So she arrived there on the Monday and was put on life support. took them a really long time to get her heart back.

And so between the Monday and the Thursday, they were trying to stabilize her and she was very stubborn. They kept throwing stuff at her and she kept throwing it back at them. And we had an amazing doctor who told me that he was just as stubborn as her. And he did an amazing job keeping us in the loop of what was happening, keeping us, I guess, optimistic and realistic. And he did a fantastic job and he listened to all of our concerns and our worries and he really took.

time to get to know Zaina, which was really nice because to them she wasn't just a person, which was really beautiful. And then on the Thursday, they were able to move her to have a neurological brain scan and that revealed that she had no brain activity. So there was not enough oxygen to the brain for a long period of time, which resulted in brain death.

Thank you for that and let's take a pause here because I know that's really hard to retell. I know that it takes us back there. I'm so sorry. And for anybody watching, there's a beautiful picture of Zaina in the background. The sweet little girl who I feel like I've gotten to know so much of her through what you've shared on social media. And she is a light. It almost feels like she was wise beyond her years. And she had this beautiful way of seeing the world, paying attention to the little things in life. And something that comes to mind right now is like.

the, you shared a post about the birds. She drew in classified birds in her area and everything. So I'm saying all of this because we talk about the moment of passing and the trauma, but it's this sweet little girl who left way too soon. My heart goes out to you. I'm so sorry. And it sounds like you had a great team of support in the medical staff and everybody who walked you through it. And I'm curious, was the moment that they told you that there was no brain activity, the moment that you realized

what was happening or did your mama heart kind of know what was happening already?

I will add that we had an exceptional team. However, we had a shift change the day that we were told that Zayna died. And the doctor who came on, I don't know if it was a case of him starting his shift and having to come and tell us that our child had died or if it was just his general practice, but he was unable to look at us. He was unable to meet our eyes.

There was no, he just kept saying your child. He wouldn't say her name. And we were then asked if we would consider organ donation and even then he wouldn't look at our face. He looked down. And so, yes, we had this exceptional team from the Monday to the Thursday. And once we had that shift change, it was a really different environment. And all the supporting staff was still amazing.

and this one doctor kind of changed our experiences of being there for the rest of the time. However, that being said, we didn't allow that to affect our internal peace and our decisions. And so I think Nils and I knew on the Monday that she took her last breath in his arms, which is so beautiful in that he was the person who was the first to

carry her. She was in his arms when he was born and she was in his arms when she died.

So there's something really poetic about that. And I always think about that moment and I'm really grateful that we got that because if it had happened at school or in a park or in someone else's home, I think we'd forever be wondering would we have been able to make a difference if we were there, would the outcome have been different? I think because we had seen how severe the reaction was and what then entailed after that.

I think deep down we knew, but we still continue to pray for a miracle. Our faith, we're Muslims and our faith is a big piece in our journey and our story and continues to be. I'm really grateful for that too. And I think we just continued to pray for a miracle. And my prayer as a mother was that I don't want Zayna to come back if she doesn't come back the same way she left.

imagining that was very hard to pray as living as that is. love somebody so much, you're willing to let them go if it means they're.

Yeah, I don't think that Zayna would have wanted to come back and not be able to run around, experience this world to the fullest on her two feet. And unfortunately, I've seen so many people who've suffered anaphylaxis and have had a lack of oxygen to the brain and the quality of life isn't what they had prior to that. And I

wanted her to come back as the Zaina that we loved and we knew. I don't know what Nils's prayers were, but I know that he also prayed for a miracle. I think the same, I think he wanted to make sure that she would be okay and she would be good and that her quality of life would be good. And then we wouldn't just be holding on just because we wanted her to be here. Yeah. So I was actually really shocked when we were, when they asked if

Thank you for sharing that.

we would consider organ donation because I wasn't sure if she was eligible to be an organ donor because of her prior health concerns and her lifelong respiratory issues and of course everything that had happened and the lack of oxygen. So I was quite taken aback and Nils and I have lived in many different countries and one of the first things that we do is sign up to be an organ donor. I think it's really important that you can leave something behind.

when you no longer need it.

Let me ask you, it sounds like this was a value prior to all of this. This is just something that you valued.

Yeah, and for myself and Nils as himself, and we've talked about it with each other, like, if you die, do you want this? If I die, do I want XYZ? But we never considered that we'd have to make that choice for one of the girls. And so that moment of being taken aback, it was almost a split second of like, is that even possible? And then it was without a hesitation, yes. In Canada, you have organ donation organizations, so.

The one in our province is Trillium, Trillium Gift of Life. And so once you say yes, then a Trillium Gift of Life coordinator comes and talks to you about the process. And there's a couple of different things that you can do in the options. And we wanted to donate as much as of Zena's body, organs and tissue as possible. So obviously her lungs were out of the question because of her severe anaphylaxis. It's used all of her lungs and the asthma.

And so we were able to donate her heart, her liver, her kidneys and her pancreas and her eyes. Then what they do is then they coordinate with other hospitals around, I think first they look in the province and then they look outside of the province. And if they don't find any within the province or within other provinces, then they offer it to the state. And one of my main things was I don't want her to leave Canada. And so was like,

praying, praying, was like, oh, I want her to stay in Canada. It's very anonymous. They'll tell you the gender and age of the person that the organs are going to. And I think that they know the gender and the age of the person too, but you don't get to know where they are. Other than that, it's quite anonymous. And so we got the gender and the ages of all of the organs. again, like faith was a really big thing during that.

during this whole episode. Her heart was initially offered to 27 year old lady and I can't remember saying to Neil, something doesn't feel right. And he kind of laughed and he was like, that's what you're thinking, it doesn't feel right. I'm like, I don't know, there's something that doesn't feel right. And so he was like, just like, just let go and let God and I was like, okay. And so then the coordinator came back to us and she said the heart was incompatible with this patient.

And I kind of had this like sigh of relief and I don't know, was just this feeling of like, okay, like that's okay. Like someone else is waiting and Zaina had a rare blood type and so they have to match like size and blood type and all of these things. And so then I was like, oh, I hope they find someone. And then they came back on the Friday and told us that they found a 10 year old girl.

and Zayna would have been 10 in May of that year. And so I was just like, this is just divine to me. And same blood type, same age. just felt like, to me, it felt like a little gift that Zayna gets to live her life in chronological order. Like her heart gets to be like 11 and 12 and 13, and it gets to grow in this like organic way. Whereas like other parts of her went to like a 67 year old man and like,

unknown 11-year-old boy and it was just like, okay, that's really nice, but it doesn't, it wasn't, I don't know, there was something more. I think the heart, we know from studies now that the heart holds memory and there's so much with the heart and Zayna had a really big heart and she was just so generous and so giving and she wanted to just do and be and see. so like, to me, felt

just amazing that that happened and I'm gonna start crying now.

That's all welcome here. can't help but notice there is a framed image of an anatomical heart behind you. And I'm curious, that's all tied. I would imagine.

So this is my little stand of like really important things that I get to see every day. So it's in behind my dining table and my kitchen's over there. So when I walk into the kitchen, I can see her. so this heart is, it was actually drawn in henna. A good friend of mine drew the heart and then she had them printed. And so when she found out that Zayna's heart was donated, she sent me this beautiful picture and it's just so like.

It's so intricate. wish you could like, I'll send you a picture of it, but the details are just so beautiful. there's like flowers and leaves and it's just gorgeous. And that's how I like kind of picture her heart too. I called her a cross between like David Attenborough and Bear Grylls. I don't know if you know Bear Grylls. You're both wonderful. Cause she was always like, I'm going to be an explorer. And from like the age of, I don't know, two.

I don't

She would watch David Attenborough documentaries and then probably around like five or six, she started watching Bear Grylls. So she wanted to be like, she was like, I want to be the two of them together. And I'm like, okay. And so she'd go and she'd take my phone and she'd make all these like crazy, like almost like Blair Witch stuff. Cause there's cameras shaking everywhere. Like she'd find like.

scratches on a log and she'd be like, my God, look at these scratches. And I wonder what kind of animal did it. okay. But like, yeah, this, just like, I think she is the epitome of like wild free alive. Everything was just, I need to do it now. Like I need to do it now. I need to see it now. Like, can we do this? Can we go here? Can we?

I don't know, can we see that? Like when we were moving here, it was really funny. She just came up to me and she was like, can we go to Alaska? And I'm like, why do want to go to Alaska? And so then she gave me this whole long reason. said, we're moving to London, Ontario, but can we go to Alaska after that? I'm like, no, we can't. And then she was like, promise me, can go one day. I was like, okay, promise you we can go one day. So she made bucket lists as well and low lists of bucket lists and under the word.

bucket list, was like things to do before I die. And I was like, that's what bucket list means, you don't have to write the little like side note. And then she'd tell me, this is my bucket list, things to do before I die. I was just like, okay, as I know. So she left us lots of little breadcrumbs in her journals and in her writing and in her artwork. And the birds is really interesting as well. Like when we moved here, was the thick of winter. And I don't know if I've shared the story with you, but

There was tons of birds and I was like, this is really weird. Like it's winter and there wasn't any, it was just branches and they were in the bush, like the bare bush and there was like Cardinals and woodpeckers and blue jays and all kinds of different birds. And I was like, it's really weird that they're here in winter. And every time she'd come down, she'd go running out onto the deck and she'd come in and be like, this bird, this bird, that bird. And when she died, the birds left.

And I came home and I, it seems so silly to say that I was so upset that the birds had gone. I was like, Zaina died and the birds left. And they were just like, it's okay. Like the birds will be back in a line. Well, why have they left? Like, why have they gone? They're not here. They're really every day and you could hear them. And about seven days after she, after we had buried her,

this red cardinal came and it just sat on the fence. It just stayed there and then it came again the next day and okay, might not be the same one, but like this red cardinal every time I talk about Zaynur where I'm, I don't know, I'm feeling particularly sad, this little red cardinal comes and I'm like, okay. And now Ziva's like, hello Zaynur. I'm like, God, okay, she's not the bird, okay, but she is a bird. But then I found the drawings and it was like the sounds that they make and I...

was laughing at the fact that I whistle to the cardinals because they have a very particular whistle. And so when they whistle, sometimes I do it back. And I was thinking, I bet she would just die laughing knowing that I'm whistling back to the bird, the whistle that she had written down, how it sounds. So I had a good laugh about that. But yeah, so all of those organs went to save all of those people.

It took them a few days to coordinate. she was in hospital from the Monday to the Sunday. And then she went down on the 19th to give her gift of life. was just a wild experience to go through. I mean, if you've ever been around someone who dies in your presence, that's an experience in itself. But then to like have it kind of play out like that and

For me, one of the things that came to mind was Zayna was obsessed with phoenixes as well. And again, this huge Harry Potter fan whose life was just full of magic and she would see the magic in everything. And then obviously the phoenix rises from death with renewed life. And I was just like, this is just so fitting for you. Those things felt really nice.

comforting to have and her heart surgeon's name was magic, which like

That's wires. Yeah, that's me. my goodness. I love that.

Like who is called magic?

Right.

And so all those little pieces were just really like, I'm in gratitude for them because I feel like my relationship with God was quite strong, but it strengthened through all those things because I don't, I'm not a believer of coincidence. I think things happen the way they're meant to happen and sometimes really crappy things happen. And sometimes crappy things happen and there's also light as well. And Zaina was just like full of light. And so.

do this hugely difficult thing that we experienced. There was lots of light and lots of lightness and things that made us laugh and things that you could not make that up if you were trying. so lots of little things like that happened. I was like, okay, to me, it feels like these are little messages that show me that Zayna is where she needs to be, even though I want her to be here with me, which is like any mom's wish.

I know that there's something bigger for her and her relationship with Zayna has become so much stronger. She's not here physically, but she's everywhere. And in the silliest moments, there's, I don't know, her favorite song will blast on the radio and, well, there'll be a rainbow in my cup of tea or my mom just moved to a new house and there's like two Zs on a building right next to it. And I'm just like, what are the odds of those things happening? And so.

I feel like there's a little communication between the two of us. I know that might feel or seem very silly to many people, but for me, in Islam, we believe that there is life after death and heaven is your eternal home. And in Islam, children go to heaven because they're pure and innocent beings. And so I know she's already where we wanted her to eventually end up.

And then she defied the odds and gave life after death in this world. And so I think that there's lots of, I don't know, mercy and blessings in Zaina's life and her death that you can see if you're open to seeing that. And I think when you lose a child, I can only speak to losing my child, but I can assume that you can either be pulled away from faith or you can be pulled towards it, or you can be very indifferent.

And for us, it was real like pulling towards like the divine being. And you know, there's like verses in the Quran that I read now and I'm like, oh, like there's one that says, whoever saves a life, it's like they save all of humanity. And then she did that. And I don't know, like with hardship comes ease. And like I said, there was so much hardship, but through it all, was like a little bit of ease and light in certain situations and decision-making. And so.

Again, perspective is huge and how you choose to look at things is really, really big. And my favorite saying is, what would Zaina do in hard situation? And I'm like, she'd laugh and she'd be like, okay, let's get on with it. And so that's what I kind of do now. I'm like, okay, what would Zaina do? And a few friends of mine have messaged me and with like huge life changing decisions in their life. We just were like, what would Zaina do? One of the other things that I found as well, right after Zaina.

kept a lot of journals and one of them was like a prompted journal and like she'd gotten it probably the beginning of 2023. And so when I found it, I was like, oh my God, and she'd written in it and I was like, I wonder if she finished this. And so I was like flicking through and I was like, oh, did she finish it? And I got to the end and the last page at the top, the prompt is, so what's next? And in big writing, she wrote everything.

And I, yeah. And so now I'm just like, okay, what's next? Everything's next. Like, just keep going. But they're little love notes from her. And like, I don't obviously think that she wrote these because she knew she was going to die, but this is just the way that her brain worked and the way that she was. And just like an amazing human being. Like everyone, everyone who met her was.

automatically drawn to her and she just made everyone feel really special as well. She would always notice if you did something different, she'd be like, you're wearing a new coat, are you wearing a new headscarf? Like, there's our new ring. She noticed like the details and I think that's what made her special because she was able to connect with like young children, but also old people. And she had a really special relationship with her great grandma, my grandma.

And she used to call her GDF, like great grandma forever and like just things like that. I'm like, I love those things and I miss them. But then I see like Ziva and how she is. And there's lots of like things that Zaina used to do that Ziva does now, which is also really weird. Cause you're like, what's happening here? But it's, it's a wild, it's been a wild experience because you have your own grief as, as a bereaved parent.

which is bereaved parents month this month. then you're navigating the grief of other people in your life. And for us, that's Ziva. And sibling loss is like, it's not for the faint of heart, I will tell you. Not at all.

And how has that experience been witnessing Ziva's grief as a mother?

It's been absolutely heart-shattering. It's... I would say it's probably worse than losing Xenon.

It's an everyday ongoing struggle of navigating life alone. She has a lot of questions. She wants to know why God would do that to her. Like why her? Why did she get left behind? Why did she only get seven years? And so there's lots of like faith questions there.

But then only knowing Zayna the whole of her life and then now having to do everything alone. so that's been hard to watch as well. know, Zayna was a really social person and she would just talk to anyone. And a lot of times I witnessed Zayna making friends on behalf of Ziva. And so she'd be like, here's a new friend for you Ziva at the playground. And so when Zayna died and we would go to playgrounds, she would just.

of look around everywhere and be totally lost and Nils and I would be like, what's wrong? And she's like, I don't know how to make friends. And so that was just like, And Zaina was a little mummy to her. And so she did her shoes and she got her dressed and she brushed her teeth and all the things that I thought they were doing together. Zaina was doing for, you know, as a parent, I'd be like, go put your shoes on and they'd go running. And in my head, they were going running and putting their shoes on and

actually Zaina was putting her shoes on and then putting Ziva's shoes on for her. And so when Zaina died, there was a lot of like, I don't know how to do this, Zaina did it for me. And so that was hard because it was like, I a bad parent? I didn't teach her to do this. And so now we're-

So much of, know, sibling loss aspect of it is that our siblings inform who we are and how we show up in the world and our role in the world. They help shape so much of that. That was very impactful for me as an adult. can only imagine what that's like as a child, going through that and having to rewire your entire existence and processing and the questions that speak so beautifully about your faith in terms of how it's been supportive to you.

And also it's completely normal to question and have doubt and be angry even and just have that conversation. maybe touch on how that's shown up for you, maybe even for Ziva. Like you mentioned it a little bit, but how do you navigate your relationship with your faith? That's such a nuanced part of grief that a lot of people don't always talk about.

Yeah, I think it's a work in progress because there's days where, days that are really hard where I'm just like, I don't know what to do. And I kind of just like look up to God and I'm like, I don't know what to do. Like you're in control. And then I kind of have to come back to like myself and that's a lot of where like the somatic grounding pieces come in because I'm like, okay, in order to be able to support someone else, I have to be able to support myself and I have to be grounded in order to help you ground. And so.

I've tried to, and I guess like that faith balance also comes with like a life balance. And so what am I doing in my actual physical life that is supporting me be like the version of myself that I want and need right now? And then how is my faith like adding to that? And so I guess they go hand in hand. so oftentimes I do say that saying let go and let God, but also you have to put in the effort of

of supporting yourself in this life. And so she's in therapy, I'm in therapy. That's been really helpful. Tools to support the nervous system, the emotions. And then what I started doing, because for me, like I said, Zaina talks to me in different ways, or I get signs in different ways, or I call them signs, whatever you want to believe. But to me, like that's a conversation between me and Zaina. And so I started pointing them out.

to Ziva because she said, God doesn't talk to me and I don't see Zaina. And I was like, okay, but Zaina is in lots of things that you do and you love. And so then I started pointing them out. so one of the big things was, well, birds are a big thing because Zaina was obsessed with birds. And so on her 10th birthday, which was right after she died, 10 walks flew past our house.

The synchronicities are always so amazing.

I know and so and they didn't just like they they came from a distance and Nils was like oh look there's like a bird of prey there and we were like we were standing on the porch and we had some friends with us and she was there and um Ziva was there and she was like oh I think there's like four I come seeing four and then like they they were like slowly coming towards us and then she was like there's seven there's eight there's ten and they kind of circled our house and then flew off and then on her 11th birthday

the same thing happen, like 11 walks flew right past our house. And so I started pointing those out and I was like, they're not Zayna, but they're little messages that allow you to see that there's something bigger. She will pick up on those things as well. And then like Zayna love rainbows. So every now and then we'll see like rainbows here and there. And we love seeing those.

That's incredible. you know, grief is a language in so many ways, you know, becoming grief informed, knowing how to speak about it, going back to the point where you said that the medical team switched shifts and then that tender care that you had with one medical group was not the same experience with the next person who didn't couldn't even look at you in the eye. So, so much of grief is learning the language of grief from having the capacity to navigate these circumstances and also on a more like

mystical, spiritual connection side. It's also learning how to understand the messages. There's a beautiful quote, and I think I'm going to butcher it, but it goes something like, God spoke to me and flowers today and I almost missed the message because I wasn't ready to, you know, receive it in that way. So one thing I've learned, and I love that, for example, in your case, Zaina had this connection to birds, you know, even with the journals and her curiosity about them and the Phoenix and all these things. So birds would make sense.

as a point of connection, you have these synchronicities, the cardinal showing up, the hawks on the birthday, the numbers, like it's undeniable once you start opening your heart and mind to these things.

And that's it. You can call it a coincidence or you can choose to be like, that's a little gift from, from wherever you like God or them or wherever. And like for us as well, we moved in in winter. there was snow everywhere. and Zayna was like, I can't wait to see which flowers grow in spring. and it was March. So spring was around the corner and I will kid you not. Every single, every single flower in my garden is purple and purple is her favorite color.

wild and you know those things are just like so beautiful and you're like and we went somewhere and last year we went to a convention in Virginia the USA and Ziva and I were there and they were giving out some awards to people there were four people that were called Zaina who they called up and the first one Ziva was like right and then they just kept like saying it and they were like Zaina Zaina and there was like

And we've never met anyone else called Zayn. So it was wild that like that happened. And so I, I always make a point to point that out to Ziva because I'm like, look, she's everywhere and there's signs for you if, if you look for them and if you're open to them, but if you close off and you're like, I'm alone, nothing happens, woe be to me. Then you're closing yourself up to all this that's available to you. And there's been some wild things that have come back to us from like.

people who have connections with like the other side and I spiritually connected people and they're just undeniable that there's something greater at play. And I love it when Ziva sees those because she's like, yeah, mom, did you see that? And I'm like, yeah, I did. And so now we call, now we have a like a little book and we've called it Gifts from Zeina and we just kind of write down like little things that happen and sometimes we forget and then we have like who to write but.

I want her to like look back because she was only seven when or just turned seven when Zayna died. And now she's nine, age that Zayna was when she died. So that has been a like a whole ball game of its own. And next year she'll be 10, which Zayna never quite made it to 10. And so I think the next few years are going to be like hands full years. But I, you know, for her, it's a lifelong thing. And I think losing a sibling is so different from

child loss to spouse loss and any other loss because I think as children or as a child with other siblings, you expect that they'll be there with you through everything. And especially an older sibling, they're kind of your benchmark of what's happening in life and how to navigate life. for Ziva, they were just so inseparable and they were almost like one in the same. They had their own beds, but they always ended up in the same bed.

where there was one, there was the other. And when one laughed, the other laughed even louder. And so it's just really, really flipping hard because you lose like the silence is like deafening. The things you have to go through and navigate in life become so heavy. Like even going to sleep is a time where

When I lie down, have my soulmate next to me and I'm like, my God, the end of the day, like, can just breathe and just be, whereas for her, like, she gets into bed and she's probably like, I'm all alone. My sister's not here and I used to have her with me and it just, ugh, chokes me up. And I just think how heavy must it be to navigate those feelings on a daily basis.

No, it's understandable and my heart goes out to her as well. I appreciate how you see her grief as well. I think one of the pain points of sibling loss is that we're called the forgotten mourners because people oversee this grief. So in a way to see you witnessing her with so much love and helping her navigate this time and helping her build the language and connection with her sister is so powerful and it's such a blessing. in a way, it's the best that we could do with what we have right now because

nothing changes the fact that she's not physically here and that you just everything. you know, how do we continue those bombs? How do we continue that connection? And your sounds like you're doing such a beautiful job. And even even now, helping other people navigate 2023 was not that long ago. It's two years. So it's a blink in a lifetime. And

know, your grief has evolved and now how has this calling of wanting to help others through your work evolved and what can you share about that?

I think it just was such an organic way to focus the things that I love doing. For a really long time, I've supported women on their health journeys, which went back all the way to when Zaina was like 18 months and how I kind of suffered caregiver burnout and navigating my own health and then Zaina's health and a newborn. so through that, my focus has always been on helping others in supporting their

emotional and physical wellbeing. In 2020, started doing cold exposure and we lived at the time really close to Lake Ontario, so like a five minute drive. so COVID, what else was there to do other than like pick up a wild and weird hobby? And so that was one of mine and I met a really great community, made a really great community out of that. And so through that, I healed a lot of my own

trauma and my own health concerns that I was dealing with. And from there kind of went down that like nervous system regulation, vagus nerve stimulation route. And so when Zaina died, a lot of people commented how calm I was and actually didn't internally feel very calm. It was just a big mess and everything was jumbled up. And obviously at that time you were going through this like

world-shattering event, life-shattering event. And so I kind of had to look back and be like, are people saying X about me? And it was all those tools that I'd been using for years up to that point that allowed me to navigate through those moments and allow as much grounding as possible during that time. And so from then I was like, okay, I really want to work with people.

who've gone through trauma. So we witnessed our child go into cardiac arrest and we had to administer CPR and it's a traumatic event. And so I really wanted to work with people who have experienced a traumatic event and who are dealing with grief. But basically people like me. Oh, I lost my job the day Zayna went into ICU. Oh my god. In high-c I'm like, okay.

It happened the way it was meant to happen. But at the time I was like, what, are you kidding me? And so I didn't do any, I didn't work for a few months and obviously summer came and I was with Ziva and my sister came over from the UK. so I was like, I need to get back into something. I need to do something. And so I curated a six week online workshop called Restoring Rebalance, which looked at finding ways to give your nervous system a little bit of a hug.

And so we did a lot of guided meditation, breath work, emotional freedom technique. We did coal plunge of sorts. I talked a lot about essential oils, which are a really great tool to help with your mood. And that was a really great gateway into doing what I really want to do. And so I ran another couple of those programs and then I wanted to really focus on bereaved mothers. I found that where I'm living now, there isn't much

Um, there isn't much in terms of support for bereaved mothers. And so I curated Refuge of the Heart, which was a, really beautiful retreat, um, for bereaved mothers. And we were able to talk about our children. And that was also really interesting because there's different loss, different types of losses. Um, some are sudden, some are unexpected, others are planned and known about. And so that was.

a really great space to allow more education for other people. How certain losses affect you and what people carry in. It was a really great way to support mothers in their journey. I have Reiki level two, so we did Reiki, meditation and breath work and we did some art therapy and it was just a really amazing space and I'm hoping to run that again later this year.

And then through that as well, was like, how am I going to use my experience to make change for the good? And so I've decided to embark on a PhD. Which I'm like, what am I thinking? I'm with...

I we know the obvious of what inspired that, but why did you fit in for

I think the inspiration from that came from having those two experiences in ICU. We had this amazing exceptional doctor and team from the minute we got into the ICU who was like constantly communicating with us, took the time to answer our questions. We asked a hundred and thousands of questions, probably multiple times over and he patiently updated us and

my family was all there and he would update them and you know and he had a laugh with us and we he got to know Zayna and he laughed at the stories we shared at her and then we had this other person who couldn't look at us and wasn't able to meet us in the heart and or even in the eyes and then I believe that I don't think

I saw him again from the Thursday until the Sunday, even though he was on shift. I think that was because he would always come in when we were out of the room so that he didn't have to like see us or talk to us or communicate with us because for some reason it was too difficult. And so it kind of got me thinking about how people who might experience that right from the get go and then they're asked, will you donate this person's organs? Like how does

all that experience informed the decision. And then I kind of went even further back. I was like, what about people who have a deep distrust for the system already, like indigenous folks? Or that was the main one that was kind of coming up to me. And then you have this experience where people are rude to you and can't meet you and talk to you and are not compassionate. And then suddenly they're asking you for something. then, and from there I had various conversations because when you're thrown into a situation in life, you often find other people who are going through a similar

So I met a lot of moms who'd lost their children, some in the same way as Zaina and others, and I got talking to them and some of them were also asked if they would donate their child's organs and some said yes and some said no. And the kind of conversations that we were having were this almost like a continuation of life for the people who said yes.

And then I wish I'd said yes to the people who said no. And so I was like, how do we come to those decisions and does our experience of the situation also play a role in the decisions that we're making? And so, like I said, we experienced this trauma as well. Then when people are talking to you, sometimes the information isn't going in because you're just like in fight or flight. And an example of that is a car crash. Like if you have a car crash, one person ends up in ICU and the other

three or four don't, they still experience the same accident as that person and they're still like in this trauma response mode. And like how someone is talking to them then really affects like how they kind of move through that situation and how they experience things. so there was so many like questions that were coming up and I was like, Oh, I need to like, feel like I need to do something with this. And I wrote an article. I ended up going to a grief literacy symposium at the.

King's College, where I've also co-facilitated a few things since then. But I got talking to the professor there and she kind of was like, you should do a PhD. And I was like, no. And then it just, as soon as she planted that seed, just kind of like, it just grew and took on a life of its own. And I say I took on a life of its own because I had no idea how I was going to pay for it. I had no idea if I'd even get onto it. It's really competitive. don't have thousands and thousands of dollars to

pay tuition fees. I was applying a month before the deadline. I haven't written an article since my master's degree, is like years and years ago. And so I was just kind of like, okay, I'll just see. I, you know, we say in Arabic, Alhamdulillah, praise to God. There was only four scholarships and I got one of them. I'm just like so happy. And one of the ICU doctors where Zainab.

Um, was in ICU. He is like the lead organ donation physician for, for PEDs. He found out about my project and he called me and he was like, I really want to be a part of this. I'd love to co-supervise you. And I have all this data for the last five years. I was like, okay. And so it was just spiraled into this. I hope that my research will lead to more compassionate, culturally sensitive.

procedures, processes, policies. And for me, that will be part of Zaina's legacy and part of obviously my legacy, but it's her. And I guess that's why it's kind of just taken on this life of its own without me having to jump through various hoops. just happened.

And I feel like, you know, you're also helping the version of you, you're showing up as the version that you needed back when you were going through these experiences and that ripples out into other people's lives through the work that we do. And obviously, obviously, Zaina lives on in such powerful and meaningful ways, quite literally in the form of Orion donation, in her spirit, in her joy, in her inspiration. And so much of this is in her honor and her name. And I'm just grateful to...

get to know you, learn about this, and get to know Zaina through you and her sister, Ziva, as well. Where could people find information if they wanted to work with you, if they wanted to connect with you? Where can they find more information?

Yeah, I'm currently on LinkedIn and Instagram. I did have a website, but a whole long story about that. And I put a lot of the programs that I'm doing out on social media. So Instagram mainly, sometimes Facebook.

and LinkedIn and I do a lot of online so it's accessible to people all around the world, which I really love. And then I do a lot of in-person stuff in the GTA, Toronto, Mississauga, Brampton, and then where I live in London, Ontario. So I'm always putting things out and I have ways that you can work with me and contact me. that's perfect.

I'll link your social media, your LinkedIn and everything in the show notes. So if you want to reach out to Miriam, then go ahead and visit the show notes and click away so you could see her contact information, her work, and also all the posts about Zayn and get to know this beautiful light that keeps on shining. We touched on so much here and you speak so beautifully and this will touch so many hearts of people. But what would you say to a parent grappling with a decision about organ donation, especially when it comes to their child?

can only talk about my child. And my child was a giver and was always helping in any way that she could. And one of the things that I used to always get upset about was she was, she could only eat a few things and she'd still be giving away her stuff in the playground. I'm like, there's no more food for you, like, stop. And so when I was faced with that decision, to me it was, this is an extension of who Zaina is.

And so I think you really have to ask yourself a little bit about why you're doing it. And for me, that was one of the reasons. And when I really thought about organ donation and why people say no, one of the main reasons I've heard often come up is like this desecration of the body. And to me personally, there might be many views. think the sanctity of human life outweighs that.

if you're cremated or if you're buried, those organs are not going to be used. It's a really selfless thing to do because you are giving something so big to somebody who is at the end of their life. And I would just really encourage people to think about the ripple effect of that. For me, that was the people that

Zayna is saving, their families are going to experience the love and joy of that person. For the children that Zayna saved, they're going to go on to become whatever they become. They might have children and any good that someone does that benefits you. so for me, that's all for her and any good that they do is a blessing for Zayna. And so kind of like, there's many different, I don't know, there's not one clear answer. feel for me, there's like many different

aspects to that. So there's that doing of good aspect and that faith aspect, but then there's the ripple effect of maybe 10 generations come from your one organ. It's just a double-edged sword, right? Because you're losing something and someone is gaining something. And I think for me it was, well, I'm losing Zayna no matter what. And so...

If someone can benefit from her and they can live a happy and healthy and long life, then there's no way that I can say no to that.

beautiful and like you said it's very personal but I think it's very helpful to hear the perspective from somebody who's walked this path and what you've gained from that and what your perspective is from that. So thank you for sharing that and I'm curious have you kept in touch with any of the people that received any of her organs?

So in Canada you're allowed to write but it's anonymous, there's no personal information. It's vetted by Trillium Gift of Life in Ontario anyway. And so you write a letter and then they'll redact anything that they think is too personal. We haven't written to anyone yet but we've received two letters. We received a letter from, there was a baby girl who received part of Zaina's liver and then

We received a letter from the person who received her pancreas. He was an old man and we received the letter a month after and they told us it was really soon and that they don't normally receive letters, but it was really nice to receive it. I think I received it a month to the day, which again, like to me, they're a little like, cause you, cause you keep track of those milestones at the beginning. You're like, Oh my God, it's a week. Oh my God. It's this.

And so a month a day we got a call and it was like, there's a letter here for you. but it was such a beautiful letter and he was on dialysis seven days a week and now he's doesn't have to have dialysis. it was just, it was just amazing. Like it, it just, if even if he gets another 10 years or another like 15 years to me, it's just such a beautiful gift that my.

miracle baby gave to somebody else. So we're the miracle.

Truly. All the synchronicities are just, they make me smile so much, know, the fact that have within the month mark, the fact that her doctor's name was Miracle. All these beautiful synchronicities. And I also know that in addition to Trillium, you wanted to highlight a couple of organizations. One of them is the Red Sneakers for Oakley and the Toffin Foundation. believe so. you share a little bit about those?

Yeah, obviously we've been within the allergy community since they had a lot of allergies. But Red Sneakers for Oakley, their son also died of anaphylaxis and unfortunately he didn't have an EpiPen. He wasn't prescribed one. But the Deb's family who are Oakley's parents and family, they have an organization called Red Sneakers for Oakley and they do a lot of education on allergies, signs to look for, how to use an EpiPen.

and they're a great resource for people who have someone with allergies in their life and for people who are walking around with an EpiPen. If you're looking after someone who has allergies as well and you not experience yourself, they have so much education. And I will say that they have been so supportive of our family and they're just an amazing, amazing organization, very warm, very friendly. If you message them, they'll, they'll always get back to you.

They're based in the US, have a lot of resources for people that are free and then they do a lot of in-person stuff in the US as well. And then the other one is Natasha's Foundation, which is in the UK. Same thing, their daughter died of anaphylaxis and they support people suing for wrongful negligence and they also have a lot of education.

I think they also have some legal acts that they're working on as well to support and protect people with allergies. So those are two amazing organizations for allergies. And then obviously in Ontario Trillium Gift of Life is the organization who we donated through. And I think each province has a different one, but they're an amazing resource as well to find information. They'll tell you things like how many lives one donor can save. And they talk a lot about like.

logistics and things like that and the gift of sight and tissue and all kinds of things that you might want to know that you might not necessarily know because I think we don't talk often about that because we don't think it's going to happen. One thing I will highlight is that there's more chance of you needing a donor than you becoming one. And within the hospital situation, only 1 % of people who die in hospital get to donate their organs. The conditions have to be so like right. so.

That's why they encourage people to sign up to be one because they don't have enough people signed up. And so, yeah, I would say if you get to know Zayna's story and you get to know Zayna a little bit through the things that I share, would really encourage you to sign up to be an organ donor.

Thank you so much. And what is something that you would like people to understand more about the seriousness of food allergies based on everything that you know? What is something that people should take away from this conversation about food allergies?

one big thing is that to people who don't have allergies, food allergies are like an inconvenience and they are, even for people who do have them, but they're so serious and the people eating nuts on airplanes or taking peanut butter and jelly sandwiches to school, that's just a minor inconvenience for you. For somebody it's life altering life taking.

and for their families life-shattering and things can escalate so quickly even when you've managed allergies for so long, so carefully. But us, Zayna reacted to some things she hadn't previously reacted to before. And so we were totally like caught off guard and those changes can occur because of hormones, because of low immune, like many, many things. And so I just want people to take.

it seriously and when someone says, have an allergy, it's not because they're being picky or that they don't want to eat a certain thing. We're not doing it for attention or for show or to be annoying. We had managed Zayn's allergies for almost nine years and that was the first and last time we had to use her EpiPen.

You just never know. just be cautious and ask, ask questions. Why, like, what are you allergic to? How can I help you? How can I support you? Again, that's a lot of caregiver burnout that happened to me was trying to navigate Zaina's allergies alone and always being like, only I can cook for her, only I can bring food. And so I think you really need the support of your community and you need to be able to say, these are the things that X person can eat. You can buy them from here.

Here's a list of all the things that are safe. Here are the things that are not. This is what can happen if this person comes into contact or eats these things. And I think for us, we had a really hard time because people didn't really take Zaina's allergies seriously. And Zaina was allergic to perfume. We had a scent free home, but people come to your house and they're like have sprayed themselves with all kinds of things. so being firm and setting

good boundaries, but then also trying to build yourself community so you're not doing it alone. I think the bottom line is that allergies are deadly serious and then they're no joke.

Thank you. You're absolutely right. feel like people underestimate or underplay the role of allergies in our society and how many things, know, food is the one that people recognize the most. But like you said, there's so many others. It could be the perfume, could be scents, it could be something unexpected. Having these conversations and when somebody tells you and expresses, hey, I'm allergic to this or my child is allergic to this, don't undermine that. Just honor it, respect it. You have no idea the f—

gymnastics, mental, emotional, physical gymnastics that somebody has to navigate on a daily basis just to be able to exist without all these reactions. And now we're getting to the end here. I honestly could talk to you for so long and I thank you for the beautiful conversation. hope listeners and people watching are taking so much away from this. before we close out, is there something that we haven't touched on that you would like to include in this conversation?

I think we've covered it all. I think one of the things I will say and I'll always highlight and to something that you do as well about the sibling lost piece and how unnoticed it goes. And it doesn't matter whether you're five, seven, 27, 50. It is an untalked about thing. think we come to this conclusion, I don't know where from that.

that children are resilient and they'll just get on with it. And I think for me, what I've really found is that there's been a lot of lip service of anything you need, I'm there for you. And actually what I need is for people to love on my child and what she needs is for people to love on her and be there for her in the time that they can because most of the time she's alone, she's lonely.

And it's a really, like I said before, it's not for the faint of heart. so when you see someone or you have someone in your life who's experiencing the death of a child and then a sibling, be there for them, talk to them, ask them what they need and then actually do it. I think for me, that's been the hardest. And that's why I said it's been, it's probably more heartbreaking than actually physically losing Zayna because

She's always navigating this and it doesn't ever go away. And so when you say you're going to do something for her and then you don't, and you say you're going to come and then you don't, those are things that then are another, like another, I guess, level of her grief. And so just be aware of all of the things that come with sibling loss and how families navigate that and how much they actually do need your support.

Thank you. Thank you for bringing that up and for again, for seeing your daughter's grief. And I agree. And I want to echo highlight and underscore everything you just said, because if you say you are going to show up, if you mean when you say, how can I help? there anything I can do to help? And the person tells you, please follow through with that. That is so key. And don't just follow through once. I know it's taxing, but we're all helping each other get through this thing called life.

people who are navigating this level of grief, sudden, unexpected, the loss of a child, something that restructures not just you personally, your identity, but your entire family system. It's so important to receive that support. Just because Miriam, for example, carries on a smile and retells the beautiful stories about Zaina with love and joy doesn't mean that we don't, that she and, you know, grievers don't need support on a...

constant basis, we all need the support. And while you can give it to other people when you're in a capacity to do so, it's important for us to receive it as well, even as caregivers and caretakers, like you said.

Yeah, I think that's huge, right? When you laugh and show up and you can make a joke and you, you smile, people think you're okay. And that shouldn't be, it shouldn't have to be that you're crying and you're unable to do things for someone to actually help you or to support you. And so thank you for mentioning that because I think, I think people do see that they see a strong person and like same with you, like you smile and you show up and you have these conversations and.

like, she's okay because she's smiling and she's showing up and doing these things. But actually like that internal heartbreak is always there. And there's good days and there's bad days and you show up and sometimes you just want to cry. But there's like no one to witness that, like not witness it as in see you do it, but like to witness that it's hard. And so yeah, I appreciate you bringing that up too.

Thank you. And yeah, we smile because we probably cry like a lot before that's the territory. And then as a final question, if Zaina were here listening to this conversation, what would you want her to know today?

I know that she knows I love her. I would just want her to know that I'll see her soon.

Beautiful. And bonus question, what would Miriam today say to Miriam after Zeno passed?

gonna be our kid.

Thank you so much, Miriam. It has been an absolute honor. Thank you. Thank you for your time and thank you for being you.

Thank you so much. I loved having this conversation.

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.