Coping with Grief and Keeping the Legacy Alive

**Caleigh (Host):**
Welcome to our Fight to Breathe, a podcast rooted in resilience, community, and the power of storytelling. My name is Caleigh Haber, and I'm so glad you're here. I was born with cystic fibrosis, a progressive, genetic, rare disease that affects the lungs and digestive system. I've undergone two double lung transplants, spent years navigating the healthcare system, and have lived through moments I wasn't sure I'd survive. But through it all, one thing has kept me going Community. The fierce, brilliant and brave voices of others who know what it means to fight for every breath. This podcast was born from that fight. 

Our Fight to Breathe is a space to elevate the voices of people living with chronic illness, disability, and rare disease. It's a space where we talk about the realities of what we face there. The triumphs and the grief, the injustice and the joy. The medical complexities and the very human stories behind them. Each episode will feature guests from all corners of the CF and medical world, from patients and caregivers to healthcare professionals and advocates. Together, we'll explore not just what it means to survive, but what it means to truly live. My hope is that you'll walk away from each episode feeling seen, understood, and a little less alone. Whether you're navigating this life yourself or you're here to learn, listen, or support someone you love, this podcast is for you. Thank you for being here. Let's keep fighting together. 

If you've lived in this community like I have, you know the grief runs deep. We lose people we love far too often. It leaves us with many questions, comparisons, and the kind of survivor's guilt that doesn't always have words. The ache of missing someone, the guilt of still being here. It's a weight many of us carrying. 

In today's episode, we're stepping into that space. We'll talk about what it means to grieve, to honor those we've lost, and to find a way to keep living not just for ourselves, but in their memory. 

Today's conversation is about life after loss, how we move through the grief of losing someone to cystic fibrosis while keeping their legacy alive. We'll explore the complicated feelings of guilt, purpose, and community connection that come with surviving. This episode is about honesty, remembrance, and learning how to show up for ourselves and for each other in the aftermath of grief. 

Our mission, with our Fight to Breathe is to hold a space for all experiences, especially the difficult ones. Grief is something our community knows too well, and we believe in honoring every voice, even the ones no longer with us. Through these conversations, we aim to foster belonging, inspire resilience, and build bridges of support in a world that often doesn't understand what this kind of loss feels like. 

Now, let's jump into the episode. 

I'm deeply honored to be joined by someone who knows this experience all too well, Diane Shader Smith. Diane is a powerful voice in the CF community, a tireless advocate, and a dedicated mother. 

Her daughter, Mallory lived with cystic fibrosis and sadly passed away at the age of 25. Since then, Diane has turned unimaginable loss into a legacy of impact, sharing Mallory's story with the world and using her voice to raise awareness, funding, and hope. 

Through her work, Diane has shared Mallory's story with the world, most notably through *Salt in My Soul* and *The Diary of a Dying Girl*. These are more than books - they're testaments to life and the fierce honesty of a young girl navigating chronic illness with wisdom far beyond her years.

Diane has traveled the country speaking passionately about her daughter's writing, offering profound insights into the lived experience of chronic illness, the emotional tool of the patient journey, the complexities of organ transplant, and the promise of phage therapy. 

Mallory's hope was that her words would help others battling the same challenges she chronic illness, anxiety, depression, body image issues, and the universal struggles of coming of age. 

Today, Diane is a global spokesperson, continuing to speak on love, loss, and legacy. If you haven't seen her TEDx talk, I highly recommend it. It's a deeply moving tribute not just to Mallory, but to all those we've lost and continue to live for. 

Diane, thank you so much for being here on the Our Fight to Breathe podcast and all that you continue to share with the world. 

So I know you very well from my years with Mallory and your family at Stanford, and I introduced you already to our listeners. But can you take a moment to introduce yourself to people that may not know you? 

**Diane Shader Smith (CF Mother, Author)**
Sure. 

My name is Diane Shader Smith and my daughter was Mallory, which is how Caleigh and I met. And I'm delighted to be here because I think that Caleigh is the true definition of a warrior and is in a position to really help educate people and bring so many different issues to the forefront of people's consciousness, which, unfortunately, the world we're living in now is quite challenging to do that. 

Caleigh (Host):
That's very true. Well, Mallory was diagnosed with cystic fibrosis at 3 years old. 

Can you take us back to that time of what you remember that diagnosis being like and how it shaped your journey as a mother moving forward?

**Diane Shader Smith (CF Mother, Author)**
Oh, yeah, it was a really interesting, terrible time. 

It started when I was 20 weeks pregnant with a third child that I knew was a girl that I really wanted. And they saw something on the ultrasound that they called an echogenic bowel.  And I said, well, what's that? 
And they said, oh, it's probably nothing, but we need to rule out of a couple things. 

So they tested my blood, and they tested my blood, and apparently it came back positive for CF as a marker. 

So then they tested Mark's blood. That took another two weeks, and that tested positive for cf. 

Then they tested the fetus's blood. Now they don't do that anymore because what happened was it put me from
week 20 to week 26. And at 26 weeks, they realized that the baby, the fetus I was carrying had cystic fibrosis. And so they told me I needed to turbinate. All the doctors conferred and said this baby was not going to do well, and so I needed to terminate this pregnancy. And I was very distraught, but I followed my doctor's advice. 

And then a week after the termination. I was in the salon where I was getting my hair cut at the time, and I was crying. And the woman who was cutting my hair said, why are you crying? And I said, you know, I terminated a six month pregnancy of a baby I really wanted, and I don't even really understand what cystic fibrosis is. 

And so she said, oh, I know what it is I have a client with cf. And I said, well, tell me about her. And apparently her client was diagnosed at age 6. And as soon as she said that, I jumped up. I broke into a cold sweat. 

I called my husband and I said, mallory has cf. 
He said, what are you talking about? 

I said, I know she has it. I knew my son Micah was two years older than Mallory. 
I knew he didn't have it, he didn't have symptoms, but Mallory had symptoms that were never explained. And so I ran home and we
immediately got her tested. 

And they said, yes, Mallory does have it. And she was three years old at the time. And it was interesting because none of her doctors, she had an allergist, a pediatric allergist, an ent, a pediatric ent, and a pediatrician. 

And the reason she'd had so many doctors was she was constantly coughing and sneezing and blowing and wheezing. 

And I kept taking her to different specialists because she kept getting sent home from preschool with the doctors telling me, they thought she was sick. 

So once the CF diagnosis came, everybody was like, wow, she doesn't have the classic failure to thrive. She was big, she had a big appetite and she was thriving in every other way. 

So nobody suspected it. So it was a pretty traumatic journey in a very short period of time. Having to terminate a six month pregnancy and then learning my three year old daughter had it. 

**Caleigh (Host):**
Wow. I think every story of a diagnosis is really tragic and heartbreaking because it doesn't only change the child's life, like myself living with cf, but it changes the entire family's dynamic. 

And that just sounds super traumatic. I'm sorry you went through that. I'm like already tearing up because I can't imagine being, you know, a female and having to terminate a six month pregnancy and going through that sort of loss to then go through another loss of, you know, cystic fibrosis and at that time being told that you're child is not going to live very long with cystic fibrosis. 

And I think I know you, so I know your spirit and your perseverance and in many ways it's like my mom, you guys have taught me, you know, and taught Mal how to fight and advocate for ourselves and that we may be told something but that doesn't always mean that it's right, that sometimes we can beat the odds and go against what we're told as long as we fight really hard. 

And sometimes it doesn't plan out. But, you know, we have to keep going, we have to fight and try our best. 

Mallory's writing, especially in Salt in My Soul, has touched people around the world. I know myself reading it. I've read it now three times. I keep reading it because in a way it connects me back to Mallory being my friend and how often we used to talk and actually just things that we used to talk about in our own personal conversations that, you know, I'm now reading it from the other side of the story in her writing. And it's brought a lot of help and a lot of issues around anxiety and depression and body image issues and organ donation and organ transplantation to the public. 

How has storytelling become a powerful tool in your advocacy journey? 

**Diane Shader Smith (CF Mother, Author)**
Well, I was using Mallory's writings from *Salt in My Soul* and then a big production company in Hollywood, 3 Arts Entertainment, made it into a documentary. So I was using all of that. 

And then I realized I would have more credibility if I actually went back and got trained. So I studied at Columbia University under Dr. Rita Sharon, who's sort of the founder, known as the creator of narrative medicine as a movement. 

And I really came to understand how powerful storytelling is in terms of moving hearts and minds. You can read statistics, you can hear about tragedy, but when you actually are told a personal story, it moves you in a way that just the mere numbers don't. So I continue to use her story. 

And she did such an amazing job of writing very detailed notes in her entries that in her diary entries that we pull together to make salt in my soul and then for *Diary of a Dying Girl.* 

So I really recommend anybody who's struggling with anything, read her books, watch the film, because they will be inspired by her perseverance and the difficult things she went through. 

You know, she talks about fighting with insurance companies and access to healthcare and what happens when you have privilege and the guilt that comes with it when you know that other people aren't so lucky. 

But it's interesting because there is a social worker named Danielle Jonas who's a good friend of Mallory's, and she recently completed her PhD and she said to me, stories like Mallory are very important because she worked for many years at Children's Hospital, Louisiana, which a big part of their patient population is underserved. 
And many of the patients that she dealt with that were very sick and died came from families where they didn't have access, they didn't have computers, they didn't have education. And the moms, she said, inevitably felt very guilty for thinking that if they had more, they would have been able to save their child. 

And Mallory's story is a reminder that money, access and privilege, while it can extend your life and it can make it better, at the end of the day, the bacteria that she was fighting and the struggles that she dealt with don't know socioeconomic borders. 

And so it's really important that we share these stories across all communities so people understand. 

**Caleigh (Host):**
Thank you for voicing that, because it is very important for, like you're saying everybody to hear these stories because in some way or another, people can learn either how to advocate for themselves or how to advocate for a loved one. Or maybe how to help a stranger. Or maybe they're just moved to get into medicine or science or advocacy in a professional form. 

You've said you carry grief in one hand and joy in another. How do you personally make space for both? What does day to day life look like for you now as you continue to honor Mallory while also living forward? 

**Diane Shader Smith (CF Mother, Author)**
Well, I feel like I found a very good balance after all these years between my day to day present life and my life with Mallory by her leaving me the books and having a documentary. It led me to the larger issue of AMR, which is antimicrobial resistance. 

And I spend a lot of time doing advocacy and education and outreach around AMR and around Mallory Story. 

And when I do that work, I allow my heart to open up to the pain and the sorrow. And then I give a talk or I write a curriculum that I deliver to somebody who uses it, or I speak to a family who's going through something, or I lobby on behalf of issues we're trying to pass, and that allows me the time to do it. And then when I've done the hour, two, three, four, whatever, in a day. 

Then I go back to living my regular life and I am able to have joy. We have a new grandchild. Micah had a baby, which is really nice to share for people who watch the documentary. Micah appears in it. And a lot of people ask me, “how is Micah doing?” because you can feel his pain when he's on camera. And he misses his sister every day and honors her as often as he can in his own way. But having his own baby has brought new life into his life and into our life, and that has really help. And they named the baby Orlando Kai. We call him “Lando”. And then Kai is his middle name. And Kai means ocean in Hawaiian. And as anybody with CF knows, when you are around the salt and the sea and the sun, the magical combination which you can find at any beach. For the most part, that is very healing. And so Kai is a nod to Mallory and his way of honoring her. 

**Caleigh (Host):**
That's nice. It's really touching that each person in your family has found their own way to cope with the grieving and to honor Mallory in a way that works for them. Because we have to recognize that not everybody's grieving process is the same and not everybody's tools for coping are the same. 

Can I ask you how the first few days of losing Mallory and the first few months, how has your grief transitioned over the last few years and what tools have you found to be able to cope? 

I think this is very important for family members out there who are listening, but also, yeah, to understand. But also I think people with cystic fibrosis, because I know when I was very end stage lung disease and we really didn't know how things were going to go, especially in organ rejection. 

I always had this fear of leaving my family and what that was going to be like and how they'd be able to find ways to keep living. So what was your process? 

**Diane Shader Smith (CF Mother, Author)**
Well, I will tell you that I've met so many moms like me, like your mom, who were on the journey day in and day out. And the loss of a child is traumatic there is no other way around it. 
It defies the logical birth order and is very hard to wrap your arms around. 

But I think that when you connect with community and you find ways to channel the energy that comes with the grief, it does absolutely help you move forward. 

**Caleigh (Host):**

And how has other people in your family members or how has other members in your family maybe found ways as well? Because you are a huge advocate and you do that so well. 

And as you've. You've said now a few times is that's been your coping mechanism, you know, to keep speaking and to keep sharing. Yeah. And I can see that for many people in the community, but I think even a larger amount of people in the world can't necessarily find their voice in doing that. 

Are there any other maybe simple things that people might be able to do to. To help them along their grieving process? 

**Diane Shader Smith (CF Mother, Author)**
Oh, yeah. I mean, look, I've been on the world stage, but most people, 99% of the people who lose a child are not able to do that. 

But you can. I'm gonna give you a simple example. You could have a lemonade stand on your street and raise money or raise awareness for your loved one that's passed. You can put together a series of photographs on social media with a quote that describes the one you've lost. You can put together all the.
You can go through your child or your spouse's or your mother's, whoever dies, their belongings and go through their favorite clothes and cut squares and sew it together to make a quilt that reflects their life, you can volunteer. A lot of people I know. 

Do you know Matt Dolan? Lizzy Got Wings? And he does fundraising by skydiving every year, which I can barely watch his YouTube video that he has recorded because it makes me so anxious when death seems so scary to me and life seems so precious. But for him, that was her passion, her dream, and so he does it to honor her, and it's very meaningful to him. 

So people really have to find their own way to do what works for them. A lot of people walk they do the CF walks in memory of their child. If you literally do nothing more than go to your child's class and talk to the teacher and share with the kids what the diagnosis is and what happens, that can also be meaningful. 

And if there's a particular medical issue. Whether it's organ transplant, whether it's bacterial infections. Whether it's access to healthcare, insurance
obstacles, pain management, there's so many systemic failures in healthcare and specifically with cf, lung transplant. 

And for me, phage therapy, which is a viable option and is worthy of further study. We don't think it's a miracle cure at this point, but the World Health Organization just published a paper and they put it all over social media about why phages are worthy of study. 
And we've been advocating for that for seven years. 

So in terms of how we do it differently, my husband was sort of the engine behind the work that I do, providing me with the medical information, editing my talks, listening to me when I wanted to practice. And that kept him very engaged. And recently he started writing. And he's writing, I think, because Mallory wrote and I think it makes him feel connected to her because she used to have him edit her work. 

So I think people do different things. And for Micah, he always says to me, I just try to be a better person because Mallory was so good. 

And then there's Jack, Mallory's boyfriend. He told me that whenever he goes in for a job interview, he talks about his part in the phage therapy process when were getting the treatment. At the end he was involved in that and he says he speaks of it in job interviews. And he is constantly educating new people just by virtue of conversation. He's not on a world stage, he's not giving a talk to a medical school, he's not doing anything formal, but he on a day to day basis talks about it and what it meant to him. And that is very meaningful to me, knowing that he's doing that too. So I think there's lots of ways to do it. 

**Caleigh (Host):**
You mentioned one which was walking CF walks. And what were your feelings around staying connected with the cystic fibrosis community after Mallory's passing? 

Because I imagine that can't be easy. I know that you've found your purpose in sharing your voice and advocating for those of us who can't advocate for ourselves or don't have the platform to do that. And we are so grateful to you for doing that. 

But, you know, was it immediate, just dive yourself into the community or did you need to pull back a little bit and get a little bit of a break as well? 

**Diane Shader Smith (CF Mother, Author)**
No, it was more the opposite. I needed to dive in immediately because I wasn't just cut off from my daughter, I was cut off from, I would have been cut off, from everybody else. 
And I wasn't ready to let go of you or Travis or Claire or any of the people that were or their parents that were connected to. And I was really happy to stay in the lane of CF and phage therapy until the documentary put the idea of AMR and Mallory Story on the world stage. 

And I went to the White House. And they told me, you need to take this everywhere. So I spoke on Capitol Hill, and I spoke at NATO, and I spoke in Australia and Paris, in Brussels, the European Commission. I've done conferences. 
I've done medical school education, high school education, ladies lunches. Any opportunity I get to speak about these particular issues.  And that has taken me out of the CF community, although the whole time. 
For example, when the book came out. I went to Vertex and I said, you need to buy copies for patients, they're busy paying for the drugs. They can't buy books, and they need to be able to read it. 

So I've advocated in different ways, I get foundations to donate copies of *Salt in My Soul* to countries that don't have money to buy books so that they can be educated, because I know that personal story, and Mallory story in particular, is very helpful in terms of education and training. 

So I continue to do this kind of work all the time. It just. It never stops. And what I say all the time is, it's cheaper than therapy. You know, therapy is another way of coping. But I just said, instead of paying a therapist and going to talk about my problems, I'm just going to channel all of my energy and grief into this. 

And it helps because then I have a way to express it and get it out. And then I go back to my day job and my friends and my son and the grandson, and. And that just helps. 

**Caleigh (Host):**
You said in your TEDx talk about how the word legacy means different things to different people. What does legacy mean to you, and how did Mallory shape your understanding of it? 

**Diane Shader Smith (CF Mother, Author):**
I never, ever thought about legacy until
Mallory died and until she left me 2,500 pages. And I realized I had a responsibility to take the work that she had worked so hard on, to take her writings and have them published. I really had no idea what I was doing. 
But I, Because of my work in pr, marketing, communications, I knew people. 

So I asked around and networked until I found a woman named Claire Wachtel who was an amazing and extraordinary editor in New York. And she said, come to New York with her diaries I pulled a bunch of entries, and then we hold ourselves up in a hotel room for three days, for 10 hours a day, and she read through.
And she says, okay, you have way too much about the GI problems and not enough about her boy problems. Did she go to her prom? And I searched in her computer. I would put the word prom in the search, and then an entry would come up.That's how.  Because I had read it all when I was grieving. But, you know, pulling entries and creating a story arc that was very overwhelming in the best of times. And I was in active brief at this point, but it was an unbelievably rewarding process. 

And the one thing I did say to Random House was, you have to bring this book out six months after she, you know, after you receive it, because we need to get phage therapy from people are still dying. 

So I continue to get letters and emails and texts and LinkedIn notices and Instagram posts from people who are trying to learn more about it. And I've put a lot of pressure on the CF Foundation to spend more money. They have a lot of money, and they need to be spending it because people are still dying. 

We know that trikafta has been a game changer and done so much to help so many, but there's still the 10% that fall outside of it. 

**Caleigh (Host):**
Yeah, I actually talked to Emily from Emily's Entourage a couple days ago about phage therapy and the 10% and all of those. Those things. 

And it was really educational to me because, you know, I didn't have to seek that out. So as somebody in the cystic fibrosis community who is very involved, I still don't know enough. And I'm willing to admit that, you know, because I don't know everything about everything. And so that education is really important. And it opened my eyes up into myself needing to do more advocacy for the 10%, because I have double Delta 508. And, you know, I need to talk about what the rare things and the hard things and. And things that people don't have access to that maybe I do. 

Because as you mentioned before, it's not always an equal playing field when it comes to life in general. 

So I ask my mom this a lot, and it has to do with just as a mother and as a mother to somebody who's ill for the first time. I'm sure there was a big learning process for you and a learning curve for you to learn not just about cystic fibrosis, but communication with doctors, with insurance, with healthcare. You did an amazing job by writing a book to educate Mallory's class and her teachers and people in your life so that they could learn about cystic fibrosis and that book was really helpful to families like mine because that helped me as well to share it with people who loved me but didn't really quite understand cystic fibrosis and understand it in a way that, you know, they could. They could get it. 

**Diane Shader Smith (CF Mother, Author):**
Are you talking about Mallory's 65 roses? 

Caleigh (Host)
Yeah, yeah. 

**Diane Shader Smith (CF Mother, Author):**
Yeah, that book, I mean, but I will tell you. 
We sold thousands and thousands of copies because it was a really helpful tool. 

**Caleigh (Host):**
Yeah. I actually can still picture it in my bookcase. I wasn't into books either, but I did. 

Like, I remember it because my mom did help me. Like, she gave it to me to learn as well. And then we gave it to friends and parents and. Because also, like, as a mother, you have to kind of educate the parents around you because, you know, if we go to a sleepover or just even it's something as simple as they take us out for a bite to eat before dropping us off at home. There's education around enzymes and what's so important for us to do. 

And so anyways, I'm getting a little off subject there, but

**Diane Shader Smith (CF Mother, Author):**

But, wait, let me just say, it's not really off topic.Because it was the roots of my advocacy. I wrote that book when Mallory was 4 years old. I gave a copy every single year to her classmates, and I always gave it to her friends, and I gave it to the boys, and we used it. And that was the beginning of my advocacy and the beginning of me using narrative medicine to educate. So I think that it all started with that book. 

**Caleigh (Host):**
Oh. And that's where my question originally was going to go. 

How did you teach yourself how to have a voice for Mallory and for others with cystic fibrosis? 

**Diane Shader Smith (CF Mother, Author):**
Well, I'm a, my day job is in marketing and communications and crisis communications. And I always say cystic fibrosis is a crisis of communications. AMR is really a crisis of communications since people don't know what it is and it's responsible for so many millions of deaths. 

They say that by 2050, more people will die from AMR infections than all cancers combined, which is a pretty traumatic, you know, number. 

**Caleigh (Host):**
You've become a leading advocate in phage therapy. For those unfamiliar. 

What is phage therapy and how did Mallory's case bring attention to it? 

**Diane Shader Smith (CF Mother, Author):**
So phage therapy comes from the use of phages, bacteriophages, and the Latin word
*Bacteriophages* means bacteria eating virus. 

So it's a virus that eats bacteria, and you can find it in soil and sewage and waste. It's ubiquitous they have phages everywhere. 

And so Mark originally was trying to find a way to save Mallory when were worried about the scarcity of organs back then. And so he started looking into getting pig's lungs for Mallory. And then George Church at Harvard said to him, oh, pigs lungs will never arrive in time for Mallory. You should look into phage therapy. 

So Mark contacted John Dennis in Alberta, Canada, and he sort of introduced him. And then they were in Mark was introduced to Stephanie Strathi, who sent out a tweet when Mallory got really sick. 

And a bunch of different labs responded. And somehow the United States Navy got involved, and they were working secretly on Phages to treat soldiers who were coming back from Iraq with random bacteria. 

And it was sort of a humiliating thing to have soldiers be shipped overseas, survive the war, and then come home and die from an infection that they picked up over there. That was sort of an unacceptable problem that was happening. 

So they were secretly working on phages and were able, with their help. 
And Adaptive Phage Therapeutics, a company, and Stephanie Strathy and John Dennis and all these different labs and teams working together, there were many more, and they finally were able to get it to Mallory. 

But the problem was it took too long and it came too late. So the reason her case was so important was she received her first dose and they were going to do the second dose. And then our doctors told us that she would be brain dead, and they advised withdrawing life support. 

So we asked for an autopsy, and the autopsy showed proof of concept, which is that the phages had reached their targets and were starting to work. 

So we felt very strongly that other people shouldn't have to suffer the way we did and lose a child, when there was a potentially viable treatment and was worthy of further study. 

So I used the book to help raise awareness for phages. We raised money, we've given it to different labs, we're funding trials, we're funding compassionate use. We're doing all kinds of things to get it on people's radar. And it is a work in progress because we're not where we need to be, but it is showing tremendous promise. 

**Caleigh (Host):**
Well, for everybody listening, you're learning about phages right now. Go and look it up and spread the word, because just telling those around you can definitely raise awareness about this and bring attention to it. 

So thank you for everybody listening who does that? 

I always ask members of the community to send in questions for specific podcast episodes. And so these are questions that were sent in on my Instagram specifically for you about, you know, coping with grief and keeping the legacy alive. 

So somebody asked, “how do you cope with birthdays, anniversaries, and other milestones after loss? Does it get easier or just different”? 

**Diane Shader Smith (CF Mother, Author):**
It gets harder in the beginning, every year, in. After the first year, you think it's, she's never coming back. 

And the problem, I think in the first year or two, you're sort of shell shocked and you don't really believe it. And I have a close friend who lost his son around the same time, and we used to gasp and say, like, how can there be a world without Mallory? In her case, how can there be a world without Bradley? 

And it was just unfathomable. 

And I've met many, many people who have since lost children, and they all say the same thing. 
It just becomes unfathomable. 

But over time, the reality sets in, and you do go through stages of grief, and the reality can be worse, because then you realize, oh, it's not a shock. It has happened. The worst and most unimaginable horror has happened. But then you also realize at the same time that you have survived and that the world doesn't stop spinning.

And that you still have to go to the dentist and you still have to go to work, and you still have to make your bed and feed your cat and go on vacation and life goes on. 

And what they say, different people have different beliefs about this, but I believe that you have to honor those who are alive. You can't curl up and die now. 

It's easier for me because I have another child. My friend Marianne o' Hara had only one child, Caitlin o' Hara, and she passed away. And it's been much harder because she doesn't have another child. And she has done a lot of writing. She wrote a book, and she's done a lot of done. She's raised a lot of awareness through the work that she's done. And she and I always joke that we're very different. She likes the writing, and I like the marketing, because what I like to do is take a problem and solve it. And she likes to just get her thoughts on paper and never really liked the marketing. So I think you need both. And different people will rise up and accomplish different things depending upon what their needs are. My friend Andrea, who lost a child to an accidental overdose, she is a performer, so she likes to be on stage. She likes to sing. She sings in her son's memory. She gives talks, and she uses performance art, you know, different People do different things. I'm very serious. My talks are scripted, as you know, they have very colorful slides, and I try to make it an immersive experience. But at the end of the day. I have honed my messaging over time. And I know what's most important, and I make sure that I get those points across. 

**Caleigh (Host):**
Another community member asked a question, and their question was, what helped you the most in the immediate aftermath of losing Mallory, especially on the hardest days? 

**Diane Shader Smith (CF Mother, Author):**
Oh, so in terms of. You asked the question about anniversaries and birthdays, what I always did was, especially the first five years. 

When it was her birthday, I gathered some of her friends together when it was her passing, I gathered her and my friends together. On the day of her anniversary, I made sure I did something that honored her. I didn't necessarily do something with other people, but I will always remember September 11th. Not only is the day that the plane crash happened, but it's the day that Mallory got her lungs. 

**Caleigh (Host):**
Yeah, that's beautiful. I, obviously, I don't have the same story, but I can relate in the sense of, you know, being a survivor and my donor being lost. 

And I try to do the same thing. I try to do something every year on. On both of my anniversaries, my transplant anniversaries that I couldn't do before so that I can honor their gift that they've given me. 

So I've kayaked, I skydived, I hiked, like, some crazy thing mountain. You know, I. I get pretty creative in it as the years go on, and I get healthier. But for me, it has helped to live in a way that I would. I would think, honors them. And. And again, like, I don't know, because it's different, because I don't know the person, but it's helped me. 

So. Okay, so the second question that a community member asks is, “what helped you the most in the immediate aftermath of losing Mallory, especially on the hardest days?” 

**Diane Shader Smith (CF Mother, Author):**
For me, definitely reading Mallory's writing, watching the documentary, listening to her audio tapes, looking at her pictures, living and reliving my life with her. That, for me, is the most helpful. 

And most people, even if they don't write or they don't speak, they have photos, they have remembrances, which also brings up a really good point. It's important for people to share their passwords with people. Even if they don't want to share them in their life, they should leave them then upon their death, when they're not here anymore, because it's very comforting. 

It was very comforting to me to have Mallory's phones. I went through and read a lot of the text conversations. I read what you two exchanged, and it was just really meaningful to me 
to know that she had such deep conversations with you, and it made me
feel very connected to you. 

**Caleigh (Host):**
A third community member asked a third question, and their question is, if you could go back and tell yourself one thing during the final weeks with Mallory, what would it be? 

**Diane Shader Smith (CF Mother, Author):**
Oh, I wish you asked me the question. 
If I could go back and redo life, how would I do it? 

**Caleigh (Host):**
Sure, that one works, too. Is there anything you would do differently? 

**Diane Shader Smith (CF Mother, Author):**
I don't really have any regrets. At the end, we told her the phages were coming. 

She was afraid of dying. 

We didn't want her to think she was dying, so we didn't tell her. 

And we let her believe that she was going to slip off into sleep and the phages would save her.

For me, I wish I could go back and just not sweat some of the small stuff. You know, we, for the most part, we had a live happy mantra, which many of you who know Mallory know that I had a no pity party mantra. 

We made the most of every day. 

But looking back there, especially reading her journal, there were times that I was maybe a little strict or. But I wanted her to feel like a normal person, and she did. 

**Caleigh (Host):**
I spoke to my mom one of the podcast episodes a few weeks ago, and you just reminded me of something she said where she said that, you know, she is an optimist to the maximum, and she's always sort of just been positive, no matter what, no matter the situation. She believes that being positive can and teaching me how to remain positive is the right thing to do. You know, that's how she raised me and how she believed. Yeah, being a mother has helped me, and I 100% think that being positive and using positivity is a key role to why I'm alive today. Because I didn't allow myself to think of the negative, even when sometimes I wanted to or those thoughts creeped in. 

I sort of learned how to curve my brain to think towards the positive and manifest coming out in a better situation. 

But she also said that she wished that sometimes maybe she would have just curled up with me and admitted that it was really sucky and cried and then picked, you know, both of us up and moved on. 

So that sort of just reminded me of how life is. 

**Diane Shader Smith (CF Mother, Author):**
Yeah. And that speaks to what I would go back and do over. 

I totally agree with that. 

I used to do what the kids called the Perspective Lecture. When Mallory was feeling sorry for herself. That she had to do treatment or something different, I would say, yeah, but, “You'Re not blind” and “you're not crippled”. And there's a piece in her book *Salt in My Soul*, where she talks about going to Admit week at Stanford. And she said there was a blind young man, and she said she realized. How lucky she was to have the gift of sight. So I used to always try to remind both my kids that there were always people who had it much worse. They called it the Perspective lecture. ”Oh, Mom. There she goes again with another perspective lecture. We have to keep everything in perspective”. 

**Caleigh (Host):**
Is there anything else that maybe you taught Mallory that would be helpful or useful for people with cystic fibrosis to hear now? 

Because I do think that is very useful in life. Because, you know, we always think that our situation is bad, but there, it's true. Everybody, there's somebody out in the world who has it worse. And it's nice to remind ourselves that, A., we're not alone in what we're going through, and B., yeah, it could be worse circumstances. So we have to be grateful for the gifts that we do have. 

**Diane Shader Smith (CF Mother, Author):**
Yeah. Well, I think that by virtue of you doing this podcast, you're living resilience. And I don't know how much people know about your story, but when I think about what I read in Mallory's journal, she thought for sure you were going to die before she did. She was always worried about you. You were so skinny and so little and such a fighter, and you took such risks. 

And now I think, wow, she would be so blown away to see you doing this. And I'm so impressed. And I think that you remind people. That the impossible can happen. 

You know, Mallory was unlucky. She lost her battle, and nobody fought harder. But she was colonized by a bacteria that is deadly. And she really didn't stand a chance once she got it. 

And she never got the chance to receive trikafta. We wanted her to get it. My husband knew it would be good. For her, but she fell out of the criteria. And I should have fought harder. That's my regret. I should have fought harder for compassionate use. 

And I wish we had started the phage therapy earlier. 

So we do have some regrets. But I try not to live with regrets, because at the end of the day, woulda, shoulda, coulda. 
What does that get you? 

Instead, I try to use what her life meant, what she did with it, to actually help other people. And I know from the feedback I get that it's working. 

**Caleigh (Host):**
I also know because I speak to so many people in the community that bring your name up all the time about your advocacy and about things that are helping them. 

And when I spoke to Emily from Emily's entourage, she was talking about phage therapies and the funding that they've done and put into the research of it and how actually Mallory's legacy lives on in that because they've named one of the phages. 

**Diane Shader Smith (CF Mother, Author):**
Yeah. You asked me if there was some advice. 

The one advice I would definitely say is prioritize love. 

Prioritize love of your family, love of your friends, love of your community over all else, because life is short and you can always get another job and there's a lot of things you can always do. 

But I do think that your community i s really helpful. My community has really helped me through this very difficult seven and a half years since Mallory died. 

**Caleigh (Host):**
That's beautiful. I'm glad that people in the community are sticking together because I think CF community is one that is so strong and close knit and we do fight for each other and we rise up for one another. And it's beautiful that you've found comfort in people in the community. So I'm really happy about that. 

Our last question is some guest advice and a message to our listeners. 

What advice would you give someone in the CF community or any community who is currently grieving a loss? What's helped you the most? 

**Diane Shader Smith (CF Mother, Author):**
They say a person dies twice. 

Once when they leave this planet and. 

Once when you stop speaking about them. 

So I would advise people to continue to speak about their loved ones because that is how you keep them alive and also to re-shift their thinking that you carry them in their heart and they live on forever. 

I wear this necklace which has Mallory's ashes. 

One thing I have heard from friends of mine who have buried their children and then they've moved and it's traumatic for them. 

So I know different people have different beliefs about what's the right thing to. Do, but we are all believers in cremation. And I have a beautiful urn that has Mallory's ashes that I keep with me. 

And when we recently got evacuated, it was a what do they call it, a volunteer evacuation. When we had the fires in la. We were not in the hardcore area, but people were advising us because it could get close. And the first thing I grabbed was her ashes. And it's very comforting to have that with me. So that's one thing I think people should talk about.

I remember the plan was to scatter her ashes, and Mallory always said she would want her ashes scattered. And when she died, Jack wanted us, her boyfriend wanted us to scatter her ashes.  And I called her Dr. Joe Poluski and I said, I'm traumatized. I don't want to give him up. 

He said one of the best kept secrets is that no parent wants to scatter the ashes. Really, they all want to hold onto them, and I would advise people to do that. 

I think it's really been very comforting to me to have Mallory with me wherever I go. 
And we moved recently and I brought the ashes with me. 

And a friend of mine has a best friend who lost her daughter in a terrible way. She took her daughter to the school bus and told her run across the street to get the bus, and she ran on the street and got hit by a bus. I mean, it was terrible. It was the most traumatic way to go. 

She ended up getting divorced. She ended up moving to New York. And I know she has to come back every year to visit her daughter at her grave. And I think, you know, it's sad. That she has to fly across the country to meet her, to see, to feel that she's connected to her. 

So I think that's something I would advise to think carefully about where you want to leave the remains of your loved ones. 

**Caleigh (Host):**
Thank you so much for joining the Our Fight to Breathe podcast and taking the time to talk to us. And I know that your message is going far beyond this podcast and hopefully to many people around the world. So thank you so much for your time today. 

As we wrap up today's episode, I want to thank you, our listeners, your stories, support and voices are the heart of the Our Fight to Breathe podcast. If you're living with cf, a caregiver, a medical professional, or simply someone who cares, your experience matters. Sharing it helps build a stronger, more informed and more connected community. Follow, share, and join the conversation. @Fight2breathe. Thank you for being part of the Our to Breathe community. Your voice matters. 

And a heartfelt thank you to the Cystic Fibrosis Foundation's Impact Grant for supporting this podcast.