Hello and welcome to another Peeps in a Podcast. We've got a really special podcast today and I'm delighted to introduce Dani, who is also known as The Loss Mum. And I'm going to let Dani introduce herself and share a little bit about her story. So Danny over to you.
Dani:Good morning. So my name is Dani and I had Olivia Grace on the 26th of February 2019. She is my first baby and I was very blessed with a healthy and normal pregnancy, although scary because you know, you've never done it before. But unfortunately it all went a bit wrong in labor and I had a concealed placental abruption. And she was born in very poor condition. But she was not ready to leave me just yet. And she fought very hard for five weeks, two days, with severe HIE, before we had to make the decision to go and have a sleepover in a hospice. So, very traumatic, very haunting. I'm very proud of her. She defied all the odds. We were warned the first day that she was in such poor condition that they did not think that she would make the transfer to the NICU, but she did. And then we were warned that she probably wouldn't make the night, but she did. And she moved and she eventually opened her eyes. My little wonder woman. But yeah, the damage was too severe, too global, and we were out of options. So we made some special memories before going to the hospice, which I'm very grateful for all the support from the NICU team and for everything the hospice did. They were incredible.
Sarah:It's heartbreaking and there never seems to be the right words do there when, when there's been a loss. In terms. of that support, would you feel comfortable sharing a little bit about what that looked like or what that felt like and the difference that it made to you?
Dani:Yeah, I mean, so it's bad enough when you're, you know, it's bad enough that nobody, you don't fully understand labour when you've never done it before. So that's all new and then nobody can prepare you for anything potentially going wrong. And But the many women that suffer birth trauma in, you know, in general, that's a big thing. But then to have to go into a NICU is just terrifying. And, you know, like, you know, Like, it's a rollercoaster, you know, second to second and you have no idea what's happening or what's going on. And then the last thing that you can even try to comprehend is how do you make memories? When you know you're going to say goodbye, like, you know, I had no idea of the tribute things that we can do for baby, you know, I knew Olivia Grayson's death day before she passed away. You know, we pre planned to go to the hospice to remove, you know, for a compassionate extubation is what they call it. You know, so in that respect, I'm grateful that we had time to plan. And the family nurse on the NICU was very good. She organized the amazing charity Remember My Baby, who are just incredible, who came and took the most beautiful photos for us. You know, they did prints of her feet and hands and... You know, all those things that I, in my, you know, destroyed brain at the time, I was so sleep deprived, I had just no clue what was going on, I would not think to have done any of this stuff. And then I tried to imagine my life now, if I did not have any of that. Yeah, and that doesn't even bear, you know, thinking about I have a necklace that has her fingerprints, the hospice took a little fingerprint molds that they turned into silver. So I wear her necklace, you know, every day. You know, all those things that are just so important I have now, but how would you know to do any of this stuff without having an excellent NICU team there to. Guide you, you know,
Sarah:you couldn't possibly could you because I think, you know, we've experienced NICU and we've talked and you know, situations are very different, but it's hard enough to function day to day on NICU, isn't it? When, when everything is just so difficult. So to think of things beyond the next 10 minutes, sometimes. Is really hard. So to have that team around you Yeah. And to take that little bit of pressure off must have been comforting, I guess.
Dani:Yeah. It was so helpful that they arranged this stuff, they just took care of it. So I have these memories now, you know, we all think about baby's first outfit, baby's coming home, outfit, baby's first, family photo shoot, and you get to do all this. normal stuff, when you've got a healthy and thriving baby at home,. And so it's really amazing that they, you know, just, I didn't get to bring her home, but we still have some of those, those things, the teddy, the, the little muzzy cloths that one goes with her, one comes with me, and that's the stuff that, you know, keeps me going now. Yeah. Remembrance, isn't it?
Sarah:It's beyond precious, isn't it? Yeah. And Olivia Grace. Whereas they might not be in your arms, but very much in your heart and making a huge difference to the world still.
Dani:Very much, yes, she is.
Sarah:Do you want to share a little bit about the book that you've recently published?
Dani:Yes, so this has been, you know, well, four years, I suppose, in the making. I just released my memoir on the 1st of September called a Loss Mom's Journal. I, when I came home from the nicu, really after the first couple weeks, I, I started journaling and writing. I wrote, it's All to Her. Whenever I talk about Olivia Grace, I, I talk to her. It's just my style, how I've always written. It helps me to feel really close to her. Yeah, so I, you know, wrote down all the messy, incoherent feelings. Some of them probably, I was probably half tipsy a lot of the times I wrote them as I just poured my heart out onto the page. But it, it, it did help, help me process what was going on. And I also, I didn't want to forget. I didn't want to forget how awful I mean, you can't make this better. It was awful. You know, I want people to understand that there's things that you can't fix and yes, this really is that bad. So I wrote it all down and I wrote until her first birthday. You know, I, I, I wanted to believe that I'd survived that first year. So I wrote down all the, you know, all the, the important parts and. I was always going to have it made for myself. I wanted it as a physical copy on my bookshelf. And then I realized, well, do you know what? It's so lonely when you lose your baby. And perhaps. another Loss mum, you know, reading my story might make them feel a little less alone in the, you know, these grief feelings are very much shared. You're not crazy. You feel like you're going crazy, but you're not. And maybe it would just offer them a little bit of hope that if they were new in this journey, You know, okay, well, you do, you do survive. You don't think you're going to survive, but one way or another, you, you know, you do just survive. So this year it took about six, seven months. It was a long and triggering and stressful process. But I have my beautiful book and I love it and I'm very proud of it.
Sarah:You should be so proud, I think, to, to get a book published in itself, but the, the way you write and your openness and the fact that, yeah, you've acknowledged you've done it to help you, but it's to help so many other people as well. And what, what's the feedback? Because we've seen you, you're very active on social media and promoting it and reaching people. So what kind of feedback? You really are.
Dani:I'm not a social media person. I'm really bad at Facebook, but I'm trying to better my social media presence.
Sarah:You're doing a great job.
Dani:Yeah, the feedback is, it is amazing. You know, the book has, you know, it's been a lot to friends and family. And I've always been very vocal about my grief. You know, I'm really trying to change these societal pressures and expectations and this disillusion that time heals wounds that are just, they're not fixable. You cannot heal from them. But for the, you know, the feedback that I've gotten from, from people that I don't know that means, you know, so much. And, and they say it's, you know, a beautiful story and that they feel like they know Olivia Grace now. And that just means like so much to me. I feel like she's stolen a little piece of their heart and yeah, absolutely. We're raising awareness, you know, not just on the fact that I've lost her, but you know, what is HIE in, but in babies and mm-hmm. it happens, you know, more than we wish that it would. Yeah. And people need to understand they need to, you know, a lot of the time, you know, a couple years ago, I'd say people would say, you know, what did she pass away from? And I would say HIE. And it was. What's that? What's that? And so it's, it's so important to just educate everybody on what that is.
Sarah:Yeah, definitely. You are doing such a huge job on raising that awareness and, and talking about it. I think you just touched there on about the times and. timing of grief and there's no end point. And I just wondered if you could expand on that a little bit because I'd seen one of your posts talk about this, you know, and it's almost feeling there's no rights and wrongs for people either. And if people are going through grief and if they've lost a loved one, what, I guess, what advice as someone who has been through it and is going through it, what advice would you give to somebody else?
Dani:It's really hard because even, so I suppose I would be considered I was thinking about this just this morning and I was writing some content about this this morning. Because, you know, I've had a, like, a hard month and I feel like I've tried to reach out this month or I've put that expectation on myself to cope better because I'm a seasoned griever, you know, and I should, I should be better by now. There are daily triggers and those triggers are never always the same. And my emotional response is never always the same. Grief is forever changing and evolving. But it's going to last a lifetime. I know that. And I want other people to know that. So, the way I feel when I get, you know, a grief wave, to me, it's like everything that happened was yesterday. And it's today, and it will be tomorrow. Time for a grieving person is just warped, and that's a really hard concept, I think, for people, non Loss people, to understand. For them, the clock is ticking, the world is turning, and to them it's, well, this was four years ago, shouldn't you be, I hate this phrase, but over it, you know, or moved on by now. And that's... really unsupportive because it doesn't work like that, you know, so everybody is so different in what they need. But I, I recognize now better than ever before what I need. And for me, it's, it is remembrance. It's, it means a lot to me when I don't have to prompt people to talk about her, say her name. I don't want there to ever be a fear of, of bringing her up. And that when I do reach out to people. That's really brave. I think of a person who's hurting and I always get kind responses, but they do feel very hurried now. Maybe, you know, when I'm grieving my, my clock stops, time stands still. And I'd love it if other people could pause their time too, you know but it is, it is hard. It is, it's really hard.
Sarah:And do you find that people are sometimes, I guess, scared or worried to talk about Olivia Grace or to, to ask how you really are or, I think it, it can be diff like you, you know, you've touched on it can be really difficult for people, can't it, but do you find that people have felt nervous, I guess, about, about talking to you?
Dani:Yeah. Yeah. And especially in the first year. It was like I should have walked around with a trigger warning. Like, you know, they dare not breathe the words brain damage in my presence. They were terrified, you know. And I understand that. I get it. But that's my reality. That's her reality. You being afraid to say it or talk about it does not change my reality. And, you know, really? You know, other than people start in a sentence with, you know, well at least you can, you know, that's wrong. There's really not a lot you can say to someone who's hurt and that's going to make things worse and forgetting or staying silent. is definitely more painful than just talk, you know, so I, I, every year, especially like when like the holidays come around, so Christmas, you know, I know, I'm sorry to have said the word, we're in, but you know, you know, it's coming every year. I say to people, although we don't do a lot of traditional cards anymore, do we? Everything's online, but I do have, I have this really special friend and every year she sends a, you know, Christmas card and she always, always puts and a heavenly Merry Christmas to Olivia Grace. She has never once forgotten Olivia Grace in the Christmas card. I absolutely appreciate all the cards that I get from everyone else. But she is probably one of the few that always writes Olivia Grace.
Sarah:And what does that mean to you?
Dani:It's my favorite, you know, because I don't get to have a family photo, you know? And when you write someone a card, it's to you and your family and it, it, and it just, it feels wrong when they're not included. Yeah. That's just me. That's just how I feel. You know? I, I can't speak for everybody else. Maybe some people seeing their name might be, it might be too painful. Maybe they, you know, but I know that for me, adding her in things like that means a lot, you know? Yeah.
Sarah:Yeah, that's, that's lovely. And it is recognisable, we are all very different, and people will want different things, and I guess, finding out if, if, I'm trying to think, if someone was supporting a friend or a family member who'd gone through loss. Finding out what they want and what, what helps.
Dani:It's such like a, I think it is a bit of sort of that trial and error. I think that when I look back now to that, when I was sort of, you know, especially when I was re reading the book, editing and getting it all ready and I was reading back to things that I did or how did I feel? How did I cope? And I've written a bit about Christmas. It's only when you look at something, you know, in hindsight and it's like, I was learning myself. What do I need? You know I did what I knew at the time, but it was then how did that make me feel after you know, I didn't, I have Christmas ornaments for Olivia Grace. I didn't buy her anything or it didn't feel right to, to do that. But I knew after the fact, you know, I wanted to start some kind of tradition that included her, you know, so it was already too late then Christmas had been and gone, but it was about me listening to what so What did I learn from that? And then, you know, I need to communicate that to the people around me and they just need, yeah, it's, you kind of have to learn that skill of like feeding off somebody and listening to them and just figure it out with them along the way. Because every day it's a new, a new grief journey for me, you know, what was six months ago is not. The same now and so it is so hard and I know it must be so it must be so hard on my friends and family and those around me, so I really do appreciate all the, continued support to just figure it out with me so that I don't feel alone, you know, yeah.
Sarah:Yeah, and one thing that's coming up that you are heavily involved in, as well as doing your book, and doing everything else, and you're a very busy lady, is... I've got to be patient and whatnot, yeah. I know, is Baby Loss Awareness Week. Yeah. So do you want to share a little bit about your plans and the importance of that and what's coming up?
Dani:Yeah, so this, this year so I work at our local hospital and I'm very close to our bereavement midwife. She massively supported me and, you know, we formed a friendship from that. And, I just. I really advocate to be involved with stuff like this. So we have got a beautiful remembrance trellis pink and blue flowers. And, anyone can come and write their little one's name on a heart and hang it on the tree. You know, we have that up all week. There's a memory book there that's dedicated to, to babies. Yeah. We always do that. yearly cake sale, which goes down the tree because, doctors love a piece of cake. That, yeah, that always goes down really well. And then this year, I've been making, we've got some bookmarks, we've got these, feathers in a, in a jar which they're just really, oh, they're so cute. Little charms on and it, the label reads, A Loss mum is still a mum. Trying to normalize a little bit more this, this phrase a Loss mum, you know? Mm-hmm. people. We don't know still what it means, but it would be great if everyone understood,
Sarah:what, what does that mean to you for people to understand the Loss mum?'cause I know you've eve. Mentioned in your writing about at the beginning, you didn't feel like a mum.
Dani:You get so confused and such a loss of identity. And, you know, I... I remember feeling that way. You know, it took me maybe a week to really feel like a mom to Olivia Grace, just because of the shock of everything. And I don't know what I was expecting, but it nothing was what I was expecting anyway. So, you know, I didn't know how to feel. And then, and then I did feel like her mom and I had to let her go, and and people kept saying to me, you are a mom. You are a mom. And I. I just, I really, I didn't know if I felt like a mum, so how do, how do you parent the dead? It is something you just have to learn how to do but, as time went on, I, I did realise, really deep in my heart, I am a mum. I am a Loss mum. She is not here with me, but I am still a mum. And so for me, it was like I needed to find a way. When strangers,, when strangers would ask that innocent, harmless question that is so triggering. Do you have any children? How many kids do you have? And it's, it just makes women choke. I know that other women feel that way. How do you respond with that? How do you, what do you say? You know, I had to figure out what, what felt right to me to respond in a way that I could keep my composure and not just break down and cry. So I would say, yes, I do. I have a daughter, but I'm a Loss mom. She lives in my heart now. That was a way where most people knew what I meant. They understood. And then they could choose, or I could choose whether to continue a conversation about that, or we moved on. But, you know. You say you're a mom and Of course, why would anybody expect that you don't have living children? So it didn't feel right for me to say, yeah, I'm a mom. It absolutely didn't feel right for me to say, no, I'm not a mom. Yeah. So it was, just finding what worked for me. And so I used, I used that phrase, the term. Most women in the Loss community do know what a Loss man means, but a lot of people in the non Loss community don't know what it means. So it would be nice for them to understand a bit more about that.
Sarah:And you are, you are doing that, aren't you? You are raising awareness, you're talking about things, making people's feelings valid and reassurances. Yeah, it, it must be such a huge comfort to a lot of people. As we're coming to the end of this chat, we feel like I could chat for you for so long and about so many different things. We so appreciate you being open and you know, we, we have checked in to make sure you're okay to have these conversations and obviously if anybody, Has any thoughts or wants to chat through once they've listened to the podcast. We are here to support and to make sure people have the right support around them, but if there's one thing that you want us to take away or to remember about you, Olivia Grace, what, what would your key message be?
Dani:Well, firstly, you should know she has the most incredible eyes you'll ever see. And I just always want everybody to know that. She made me wait until 28 days to open them, but it was beyond worth the wait. They were stunning. I will always advocate for better standards for change and for awareness. And, you know, it's a really uncomfortable and painful topic. But the way I see it is, it's my pain, it's my grief, and I'm going to try my hardest to make the best outcomes, because it all just comes from a place of love. So, you know, you just keep supporting and being there and sharing the love, that's all you can do.
Sarah:You are doing an amazing thing and, yeah, if we're in the same room, I'd, yeah, want to give you a big hug and just thank you for...
Dani:I'll take one.
Sarah:I would always ask first, but yeah. It just, yeah, that we, I think is, it's human nature, isn't it? We want to make things okay and to, to do it and acknowledging that we can't, we can't change everything. But if we can support, if we can listen, if we can hold space and remember.
Dani:You're helping to patch back that, you know, you're helping to piece back a broken heart just a little bit, to be just a bit stronger than it did the day before. And that's what keeps us surviving, isn't it?
Sarah:But thank you so much. We will share all the details of your Facebook page. Even though you say you're not good on social media, you are. You're doing a sterling thing. And links to your book as well. Wonderful.
Dani:Thank you very much.
Sarah:If anyone has been touched by anything that's been discussed, then please contact us and we will share all of our details. Thank you so much, Danny.
Dani:No worries. Thank you.
Sarah:Thank you.