Why You Should Buy the Balloon: Rare Disease, Hard Truths, and Beautiful Moments, with Erin Paterson and Laura Will

In this powerful episode marking Rare Disease Awareness Day, we bring together two remarkable guests whose lives have been profoundly shaped by rare diseases. Erin Paterson, who carries the gene for Huntington's disease and cares for her father with the same condition, and Laura Will, mother to five-year-old Alden who has polymicrogyria, share their unique yet interconnected journeys.

The conversation explores the complex reality of being both a caregiver and advocate while maintaining one's own identity. From Laura's innovative concept of "soul to soul communication" with Alden to Erin's approach to involving her daughter in her father's care, these stories highlight how rare diseases, though individually uncommon, create universal experiences of love, resilience, and finding joy in unexpected moments.

Erin discusses her journey from hiding her diagnosis to becoming an advocate and voice for the rare disease community. Laura, a former palliative care nurse turned "Dragon Mom," shares insights on finding strength in uncertainty and creating support systems for other parents navigating similar challenges.

Key Takeaways:

• Connection doesn't require identical diagnoses - finding others facing similar challenges is what matters most
• Life with rare disease can be both challenging and beautiful simultaneously
• Small achievements others take for granted can become meaningful victories worth celebrating
• Pain can be transformed into purpose through advocacy and support for others
• Setting boundaries around caregiving is essential for sustainability
• Managing uncertainty becomes easier with practice and specific strategies
• Sharing your story, whether through casual conversation or published work, helps build understanding about rare disease

To learn more about rare disease awareness and support, check out the anthology Positively Rare, which benefits Global Genes, and Jessica Fein's memoir Breathtaking: A Memoir of Family, Dreams, and Broken Genes.

Learn more about Erin:

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Music credit: Limitless by Bells

Transcript

Jessica Fein: Welcome. I'm Jessica Fein, and this is the “I Don’t Know How You Do It” podcast, where we talk to people whose lives seem unimaginable from the outside and dive into how they're able to do things that look undoable. I'm so glad you're joining me on this journey. And I hope you enjoy the conversation. 

If you've been listening to this show for a while, you probably know that my life was forever changed by rare disease when my daughter Dalia was diagnosed with MERRF syndrome. Today, we are marking rare disease awareness day with two remarkable guests whose lives have also been profoundly shaped by rare disease, but not in the ways you might expect.

Erin Paterson lives with the knowledge that she carries the gene for Huntington's disease, the same condition that affects her father. Laura Will is mother to Alden, a five year old with polymicrogyria, a rare neurological condition. While their situations are different, they share so much. The reality of living with uncertainty, the stress of living on the precipice, and the ability to find [00:01:00] beauty and meaning within incredibly challenging circumstances. 

In this intimate conversation, we explore what it means to be a caregiver and an advocate, and also to continue to find time for yourself. From Laura's concept of soul to soul communication with Alden, to Erin's practice of involving her daughter in her father's care, they remind us that while rare diseases may be individually uncommon, the human experiences they create of love, resilience, and finding joy in small victories, Speak to us all.

It's my honor to bring you Erin Paterson and Laura Will.

Hi, Erin. Hi, Laura. I'm so happy to have both of you here today. 

Erin Paterson: Thank you for having us. 

Jessica Fein: Since we're here with a focus on rare disease, I'd love to start if you could each just introduce yourself and tell us a little bit about the rare disease that so dramatically changed your life. 

Erin, you want to go first?

Erin Paterson: Sure. Sounds good. I live in Toronto, Canada. My name [00:02:00] is Erin Paterson and I am from the Huntington's disease community. My dad is in the later stages of Huntington's disease. He had late onset HD and I went through genetic testing in my early thirties and I tested gene positive for Huntington's disease.

So that means while I'm not symptomatic at this point in my life, it is a hundred percent guaranteed that I will develop the disease at some point during my life. And it has had a huge impact in my life, especially when it came to family planning and deciding whether or not to have kids when I knew that there was a 50 50 chance of passing on the gene to my kid.

And it was a very tumultuous time. I would say it was the worst five and a half years of my life. Because I was so concerned about making the right decision and doing the right thing, but I've since learned that no matter what you do, it's the right decision for you. And if you have a kid that's at risk, that's great.

If you go through IVF with genetic testing, that's amazing. Or if you choose to live child free, that's great as well. So I wish I didn't put so much pressure [00:03:00] on myself in my thirties. 

Jessica Fein: Yeah. And such a big part about Rare Disease Awareness Day is just that, raising awareness. So tell us, what is Huntington's disease?

How does that show up? What does it look like? 

Erin Paterson: So some people describe Huntington's disease as a mixture of Parkinson's, ALS, and Alzheimer's. It affects your cognition, it affects your mobility, and it affects your emotions. It's easier for me just to say in the context of how my dad's living with it and give you an example.

My dad takes a long, long time to reply. So if you ask him a question, he could take up to one or two minutes to be able to answer that question. So you literally just have to sit there and wait for him to come out with his answer. And when he does, it's not like he's speaking just like you and me. He could come out with one or two words and it's like he has to really spit them out.

He is mentally in there. I know that my dad is there because, you know, you can communicate in other ways, just not just verbally. I could see it in his eyes. He can still walk, but he uses a walker, but he has a very shaky walk [00:04:00] that often looks dangerous and medical professionals, you know, think he should be in a wheelchair because they don't like the look of his walk, but we're just used to it.

He's been walking that way for 10 years. And then I would say in the early stages of the disease, there's a lot of emotional outbursts and lack of control over your emotions. And he doesn't really have any facial expressions anymore. So if he goes to smile, he kind of like looks at you with an open mouth and that's his smiling.

So he is still able to eat by himself and walk down to the dining hall, but he pretty much needs help with every other aspect of life from getting dressed in the morning to helping with his medications. And I think the hardest part really is that he can't. Speak or advocate for himself. So I'm the one who has to do that for him.

So when he's in hospital, I'm always in constant contact with the hospital saying my dad has Huntington's disease. He knows what's going on. He just can't reply to you and you need to let me know what's going on so that I can make sure that he gets The follow up care that he needs. 

Jessica Fein: Thank [00:05:00] you for sharing all that and Laura, what about you? 

Laura Will: My name's Laura Will. I live outside of Boston, and I am mother to three children. My middle child, Alden, who is now five, was born with a rare condition called polymicrogyria. Doctor's best guess at what the MRI findings are, although I would say he's still probably under-diagnosed.

Polymicrogyria exists on a very large spectrum. Some people walk around, you know, until they're 30 and then have kind of an incidental finding when they're having some mild symptoms. And other people are quite significantly disabled physically and intellectually. And Alden was born with a fairly severe presentation of this.

So some of what you spoke to, Erin, in terms of that dual nature of caregiving, where you are not just caring for the physical being, but also that advocacy and really having to be their voice, you know, those are two different hats of many that I [00:06:00] think we wear. So, that certainly spoke to me and, and Alden presents like a child with fairly severe cerebral palsy and I guess that's often how I refer to him just because it's a little bit more recognizable and people kind of nod and say, uh huh, and they can put it in a bucket that they know, which is sometimes helpful, the muscles that control his mouth also did not have great intervention from his motor cortex. And so he is G tube fed and nonverbal in that he really just doesn't have the muscular control to produce speech. So I also was nodding along, Erin, as you spoke to finding other ways to communicate and the patience that it takes to allow for that communication to occur.

And I've been referring to it as soul to soul communication, where it really does go beyond language and it's just these two humans being with each other, but different from the experience [00:07:00] of caring for a adult where you're saying, my dad is still there and you're still seeing these recognizing aspects of who he is.

I feel like I'm trying to discover who my son is through this haze that this severe disability puts up and trying to understand, you know, what really does motivate him. What would he like me to help facilitate in his life? 

Jessica Fein: Thank you. And I come to this world through my daughter, Dalia, who had MERRF syndrome, which people who have been listening to this show have probably heard me talk about many times.

But in case you're new here, MERRF syndrome is myoclonic epilepsy ragged red fiber, which is a form of mitochondrial disease. And so I definitely related to aspects of what each of you were saying, because Dalia was developing normally until her diagnosis was at age five, and she lived to be 17, and with a degenerative disease, she then lost her [00:08:00] functionality over time.

So, Erin, to your point of I know she's still in there, I definitely had years of that experience. And, Laura, I'm so struck by the idea of soul to soul communication, which I think was the strongest way we communicated, even when she was talking. So I love that idea. Erin, you brought us all together. You put together and produced this book, Positively Rare, which is an amazing anthology of people whose lives have been impacted by rare disease, and you've learned so much about so many different diseases in the course of reading this book.

I know this isn't your first book, but what made you decide that these stories need to be told? 

Erin Paterson: Well, I lived in secrecy and fear and I hid my diagnosis for a good 10 to 12 years. And then eventually I thought there's got to be a better way to live my life than to live with this shame that was building up.

And my family was very secretive about Huntington's disease, as are a lot of HD [00:09:00] families. And when I wrote my first book called All Good Things, I just felt this huge release. And there were all these stories of all this trauma that I had gone through that I was holding on to. And when I finally wrote it and released my book, I felt like, well, now those stories can live inside the book and they don't have to live inside of me anymore.

And that was not something I expected to happen. It was such a huge relief. And I thought it would be great to help other people from the HD community feel that way. So then I worked on a book called Huntington's Disease Heroes, and I gathered 26 people from nine different countries together for that book.

And Huntington's Disease is a rare disease, so that's why I decided to put together Positively Rare as my third book. Because I know we're pretty lucky, we have quite a strong community built around us. There's a lot of HD organizations across the world. And for a lot of people in the book, you know, we have this Facebook group with all of our writers in it, and some people are like, this is the first time I've ever met [00:10:00] somebody else with a rare disease.

So it's just really impactful to create the space where people are able to share whatever story they want. And I didn't put any limits on what they were sharing. Everybody who participated in the project has gone through something that they felt, I need to let other people know about this so that they don't struggle as much as I do.

And then we just worked on finding stories from our lives that illustrated that message. 

Jessica Fein: What I love about it is that while each person's story, obviously is unique. I have always found that if I come together with somebody else whose life has been impacted by rare disease, it really doesn't matter what that disease is.

It doesn't have to be MERRF syndrome. And in fact, it probably isn't. But there's so much we can relate to about the experiences that we all share. Laura, I was so struck by your essay. It's gorgeous in the book about being a dragon mom. And I'd love to know, first of all, what even is a dragon mom? And when and how did you become one?

Laura Will: Well, the [00:11:00] dragon mom is language that I learned very early in my process with becoming Alden's mom. We learned about his diagnosis when he was four months old. And very quickly, it became clear that mother wasn't quite enough to describe this experience. There was just an unbelievable amount of grief.

There took a lot more energy, a lot more coordination, advocacy, all of these things. And I was really struggling to come up with the right word for what this journey was going to be. And I just think the power of being a part of this book was because it was the people, the memoirs and the stories that came before me that I could learn from.

And I really enjoyed reading Emily Rapp Black’s opinion piece where she described what a Dragon Mom is as a mother of a child with a life limiting illness. And that this version of parenthood requires a significant amount of ferocity, [00:12:00] it's a little bit lonely, and we have this just awesome responsibility to steward our children through a life with maximum dignity and minimal pain.

And when I came across her language of Dragon Mom, something just clicked and all of a sudden I could see the strength that I had and the pain that I held and could hold space for all of it with that language. 

Jessica Fein: And let's just say, by the way, you're not only holding space for your own experience. But you also run a group where you bring together other parents of kids with either rare diseases or other kinds of disabilities.

And I'm so struck by that because being a dragon mom takes pretty much every ounce of energy you knew you had and every ounce of energy you never imagined you had. But then you, on top of that, go and lead other. parents to come together and talk about these things. How do you do that? How do [00:13:00] you find the space within to give of yourself in that way when you're giving so much to your family?

Laura Will: Well, it came in a time where I was not in survival mode as a caregiver. And I really want to acknowledge that as a caregiver, there are many of us out there who just simply would not have the capacity to move beyond the immediate needs of the person they're caring for. But I was blessed with a kind of stable time in Alden's life and felt like I really needed to integrate the person that I was before being his mom into what this new journey was and that that would offer some healing and some meaning making and I was a palliative care nurse practitioner before becoming his mom and I had some degree of comfort in holding family meetings and talking about this tough stuff and at the same time was looking to connect with other rare parents out there and seeking this type of support and couldn't find it.

So I reached out [00:14:00] to Cape Cod Children's Place and they said. We'd love to have you do it. And we got it grant funded and it's really an honor to hold space for these other parents. The power of the group comes from the people who show up and bring their kind of authentic lived experience and the willingness to share and listen has really been a wonderful thing. And I love setting up each group with a framework, presenting, perhaps it's a coping skill that's been particularly important or a question that's been coming to mind, and bringing it to the group and allowing for us to not just talk about our lived experience in the last week or two, but to really walk away with hopefully a little nugget of knowledge that they can nod to and think about as they go back to their grind as a caregiver.

Jessica Fein: Just to kind of dig into that a little bit more, you were a palliative caregiver. So many people I've spoken with talk about the impact that their palliative [00:15:00] care individual or team who's working with their family. What a difference that person has made. I mean, in my book, I have a whole chapter on the person who made such a difference in our life in terms of palliative care, even though, by the way, a lot of people resist it because they don't know what it is.

But I'm curious, two things. Number one, how did your experience as a palliative care nurse impact the care you give to Alton? And two, now that you are a medical mama, do you look back at anything you did as a palliative care provider and think like, oh boy, I got that wrong? 

Laura Will: I think I'll start with the second question, in that, as a palliative care provider, I spent a lot of time and energy managing the symptoms around somebody's disease or condition, where they're getting curative treatment or seeing a cardiologist, I was managing the shortness of breath or the nausea, and that is often the role of palliative care is to make somebody more comfortable to think about the quality of the day. But [00:16:00] what I missed as a clinician and now see as one of the most important things as a caregiver is the ability to just sit with a patient or family's uncertainty. And that has been the greatest lesson of all this is how to live with uncertainty as this parent.

And I am so struck by the clinicians, both palliative care and not, who are able to To do that with us, I was my previous career informed my care for Alden. I think it was some of those frameworks of being able to really lean in quickly to thinking about quality of life over quantity of days and really.

Starting to make some of the decisions early on to really protect his joy for today and not just think more, more, more in terms of medicine will make it better. Being able to kind of hit the brake and speak [00:17:00] with the teams and then move from there in a more informed way of what's really going to be best and make today the best for all of them.

Jessica Fein: It's interesting to me that when we think about a clinician who is prepared to move in the realm of uncertainty and that you appreciate that so much now, because I know I wanted early on certainty. And it frustrated me when any kind of medical provider, whether that was, it wasn't a first palliative care, but whatever medical provider it was.

Couldn't give me certain answers. I was like, what do you mean you don't know? What do you mean you don't know? Because I didn't know and I was looking to them. They're the experts. Shouldn't they know? And it is interesting how it can become an evolution to appreciate the candor that, no, we don't know and I'm not going to pretend to know.

But I gotta tell you, I still found it frustrating. I wanted answers. Erin, what about you? Do you want [00:18:00] definitive answers? Does it frustrate you when you don't get that? Or are you okay with uncertainty? 

Erin Paterson: Well, when I first found out about HD, I felt like I was in control of my life, and I quickly found out that I wasn't.

So I guess I've learned to live with uncertainty now. You never know what each day is going to bring and what crisis is going to come up. I don't think I've embraced it, but I've just learned to manage it better than I used to.

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Jessica Fein: Erin, you have yet another perspective on the care that you're giving for your father because you're watching an experience that you feel will one day be your own experience. 

Erin Paterson: I would say that's the hardest part of my whole entire journey is being able to maintain a relationship with my dad and do all of the things that I need to do for my dad, knowing that those things are going to happen to me.

And I know everybody presents a little bit differently and I might not be taking the exact same path. But, you know, the big picture is the same. So, in the beginning, when I was first diagnosed, just even being around my dad would set me into a depression for like a good week. I would say, now I am able to rebound a lot faster.

When I go see him, maybe I'm just depressed on the [00:20:00] two hour car ride home, and then I'm okay. But I would also say that every single thing I do and every phone call that I field and every time I have to order supplies for him or, you know, get his glasses fixed, those are all triggers for me. Even just getting a simple phone call can really throw my day off.

So it's really hard to figure out how to manage that without always being in a tailspin and just letting the depression overpower me. That's definitely the hardest part for me. 

Jessica Fein: Have you thought about in the future, if your life looks like his, who will be the you? My daughter. So imagine she's watching what you're doing, and that's a whole other experience for her trying to kind of forecast into what things might be like for her.

Erin Paterson: So luckily my daughter is not at risk because she's adopted, so there's a little bit of a blessing in the journey that I went through to become a parent. It's a blessing in the end that she is not at risk. [00:21:00] And I take a lot of hope away for my future by teaching my daughter all of the ways that she's going to have to deal with me now.

So whenever we go to see grandpa, that is a learning opportunity for her. And ever since she was a little tiny baby, we've used the word Huntington's disease in front of her and we've never hidden it. And if my dad was experiencing symptoms, we would say, you know, grandpa can't go for that walk on the beach with you because he can't walk in the sand anymore because of his Huntington's disease.

We didn't shy away from explaining it to her in those words and, um, not being afraid of. Using the word Huntington's disease in front of her. So she is an amazing advocate now and she is more understanding than a lot of adults and even sometimes medical professionals in dealing with her grandpa. You know, she's a little kid.

She likes to talk a lot and for her to learn to have the patience to let my dad reply. I think, like, even that is just a fantastic thing. And she recently wrote a book about her grandpa, which we [00:22:00] turned into a kid's picture book. And it explains some of the three common symptoms that people misunderstand about her grandpa in a child friendly way, so that other kids and families will understand as well.

And I've even been handing it out to my dad's caregivers because it's a quick and easy way for them to get those three facts. 

Jessica Fein: Talk about following in your footsteps, my goodness, that's amazing. So how do you take care of yourself? I don't mean physically, but emotionally, you're carrying so much. How do you care for yourself?

Erin Paterson: It can be hard. Like Laura was saying earlier, sometimes you're just like in a crisis situation and you just have to get through that crisis and get through the day. And sometimes you can't take care of yourself. But when things are a little bit calmer with my dad, things tend to go in ebbs and flows.

He'll have a bunch of crises all in a row and then maybe we'll have a couple of months where he's doing pretty good. So I just always make sure that I go to the gym and exercise. I play pickleball. I do spin [00:23:00] class. I go for walks at the local nature trail. I try to consistently meditate, but I can't always fit it in.

And for me, my self care is sleeping. That's my recovery. I tend to sleep a lot. And of course, writing. Whenever something happens that pisses me off, then I just write an article about it and get it published online. I find that really cathartic, for sure. Because at least then I feel like I'm doing something to help the situation.

Jessica Fein: Yeah. Laura, what about you? What do you find is your go to when you're like, I need to do something for myself? 

Laura Will: When I am angry, I write as well. It is such a good outlet. You just get it out and then you can kind of process it and there is a power in even that process of editing and then creating meaning or direction out of it.

I would say some things that have been very helpful over time is just really putting blinders on in terms, like limiting the amount of time I allow myself to think about. time increments. You know, I feel very overwhelmed if I think about greater than six months from [00:24:00] now in terms of meeting Alden's needs.

And sometimes when I'm really in the thick of it, caregiving, it's like, okay, I just have to think about this hour. And that was actually me this morning at 4 a. m. in bed with him. He's on day five of a fever. And I was so sleep deprived and starting to lose my patience. And I was like, I just need to be. In this hour, and not overthink it, and it takes away that this is so unfair for him, for me, you know, just zooming in, and I did find that practice of kind of setting limits on what I would think about really tricky at first, and it's been this awesome practice that has grown stronger with time, Aaron, you alluded to meditation, and I think that this might be my, like, version of caregiving meditation is like, all right, that thought, That's actually nine months from now.

Don't need to deal with that, you know, and just let that thought go. I outsource a lot. I will do a meal delivery service [00:25:00] during these tough times where it's either that or mac and cheese another night. And I guess finding forgiveness for that aspect of the journey is there's only so many hours in a day and caregiving is really time consuming.

And really, I think setting some boundaries around the care and demands of medically meeting his needs. I don't think I had the courage or understanding early on that I could push back on doctors and say, Do we really need that three month follow up or can we do a six month follow up? And you know what?

I'm coming in to see his pulmonologist on thus and such day, so we really need to schedule this eye doctor appointment on the same day. Right. And starting to set some of those boundaries so that I can free up some time to get outside, you know, get to the gym, sit down with a book, whatever it is in those small moments.

Jessica Fein: I think it's so interesting that you said when you're kind of swirling, you can say, okay, that's something for nine months from now. I don't need to think about [00:26:00] that now. And I think that skill may be useful as we think about how do we live in perpetual uncertainty. 

Laura Will: I agree with that. And I also think we are so quick to try to label something as good or bad and the ability to step away from that framework and just be like, this is, and we're going to see what comes from this.

Duality is helpful as we just deal with the bumpiness of life. 

Jessica Fein: You know, listening to this one year with rare disease mom and one year with just mom or just person and thinking like, this is so useful for whatever we're dealing with, right? Because we're all living with uncertainty. I mean, we might think we're living with certainty, but nobody is, right?

And we're all swirling to whatever we don't need to be thinking about for the next nine months. What do you wish people understood each of you about rare disease? 

Laura Will: There's so many ways that I could answer that question. I think my first instinct is [00:27:00] that while each rare disease is rare and unique, each lived experience within each rare disease is also rare and unique.

And within this entire community of rare disease, there are so many commonalities. So I have found that I can feel most connected with the lived experience of a parent of a child with a completely different rare disease. And it's because we're kind of up against a similar battle at that time. And so I guess my thought is, you know, if you are living with a rare disease or trying to support somebody with a rare disease, it's not, you know, you've got to find the person with the same diagnosis.

I think it's beneficial to find somebody who's looking for similar supports as you. That there are more commonalities than differences across the board, while also honoring that every single journey is unique. 

Erin Paterson: I guess I would say that living with a rare disease in the rare disease [00:28:00] community is extremely hard, but it doesn't mean that our lives are miserable.

And that they're over and that there's no point to anything like I'm living a beautiful life, even with rare disease in it. And even though my dad's towards the end stages of the disease, I feel like we have a better relationship now than we ever have our entire life. And that's because of Huntington's disease.

Because I've had to step into the role of being his caregiver, we've developed this close relationship, and I know so much more about my dad than I ever knew, and I think that's a gift. 

Laura Will: I absolutely love what you said about this not being tragic, and I think that Before I am living this life, I would have passed my son on the street and seen this little kid in a little wheelchair with this little talker drooling a little bit, and I would have approached it with a pity.

And, you know, whether or not I could admit it to myself, I had all these layers of ableist thoughts and [00:29:00] tendencies. And it has been this awesome soul expanding opportunity to get to know what it is to be human. And that it is harder. It is more challenging. And the fact that I'm getting through every day as his parent, I'm getting stronger.

And I think that my like baseline set happiness is higher. Like it's very strange, but I am more joyful. 

Jessica Fein: One of the gifts that I experienced was Feeling like there was a victory in things that other people take for granted, because things became so hard, doing something that seems ordinary, when we were able to pull it off, that was like a victory.

I'm wondering, for each of you, when you have what you perceive as a victory, whether that's in your caregiving role or whether that's just in your taking care of yourself role, how do you like to celebrate those small victories? 

Erin Paterson: I'm super bad at celebrating. 

Jessica Fein: Laura, we need you, tell us. [00:30:00] 

Laura Will: I think I just celebrate more little things like I dance in the kitchen and I'm goofier and I just don't really care what people think as much.

There's a lower bar for buying a balloon at a supermarket. 

Jessica Fein: That's one of my favorite things anybody has ever said on this show. I love that there is a lower. Bar for buying a balloon. Okay. So Erin, you said you didn't know how you celebrate. So I'm going to suggest you go off to the grocery store and buy some balloons.

Erin Paterson: We do celebrate a little bit. I guess it would be seen as that when we have a visit with my dad. And we're driving home. My daughter and I always talk about the good things that happened during that visit. So I guess that would be celebrating the wins, you know? Like, Grandpa had a hard time with XYZ, but, you know, we went on a nice walk around the first floor together, and that was great.

Or he managed to play a game of shuffleboard, and that was really amazing. Or, one of the things that we celebrate the most is when he's feeling good, and he can say three sentences in a [00:31:00] row. And then you're like, oh my god, I feel like I just had this whole entire conversation with my dad because he said three sentences in a row and it reminds me of the dad that he used to be and it makes me really happy but it also makes me want to cry at the same time.

Laura Will: I love the lesson that that is for your daughter, and I feel as though I am teaching a similar lesson of just being able to be grateful for the little things in life. And it doesn't just have to be in that caregiving role. And I see that that's like becoming one of her superpowers as a sibling to Alden and translating in the school environment.

And I also am trying very hard to teach her. We can celebrate these little wins, like, you know, Alden putting two puzzle pieces together, and it's hard, and being able to help her not wear rosy glasses and feel like it needs to be okay, but this sucks and it's beautiful. 

Jessica Fein: This [00:32:00] sucks and it's beautiful. I love that.

Laura Will: I just want to thank Erin for putting together and allowing for these stories to come forward in Positively Rare. She did an amazing job of allowing each person to bring their own story forward and just some basic stewardship of our journeys. And there is such a power in storytelling in allowing people to find the language that is right for them.

to kind of edit and re edit what their journey has been. And you've allowed us to all do that, to find the right language and frame up our stories. Thank you for that.

Erin Paterson: Well, thank you so much. It's been a real joy working with everybody and it's really empowering and inspiring to see all of the amazing things that people are doing with their lives, even though they're impacted by rare disease.

And I just feel it's really important for people to be able to share their voice. And as you know, Laura, I don't change a single word in anybody's [00:33:00] story without them saying it's okay or coming up with the word that they want to use because I know if there's a word you would never use in there, it just doesn't feel like your story at all.

And I just feel like if we're not talking about what it's like to live with a rare disease or writing about what it's like to live with a rare disease, then how are we ever going to expect people to understand? So, I just really encourage people to speak about their rare disease in whatever way feels good to them.

And that might just be going out with a friend for coffee, or it might be writing a blog, or it might be being on a podcast or in a book. Nothing is too small, whatever you feel comfortable doing is great. 

Jessica Fein: Well, I want to thank you both so much and tell people that if you want to read these stories and to learn more, Positively Rare, which there will be a link in the show notes, is a great, great place to start, particularly as we're here with Rare Disease Awareness Day.

And what's so amazing is that a portion of the proceeds goes to support global [00:34:00] genes. So I recommend that everybody read it. And Laura and Erin, thank you so much for sharing so openly with us today. 

Erin Paterson: Thank you so much for having us. 

Laura Will: Thank you. 

Jessica Fein: Here are my takeaways from the conversation with Erin and Laura.

Number one, you don't need to find someone with your exact situation to find deep connection and understanding. What matters is to find other people facing similar challenges or seeking similar support. Number two, you can acknowledge both the difficulty and the beauty in a situation simultaneously.

Something we talk about a lot on this show. As Laura put it, this sucks and it's beautiful. Life with rare disease is not just a tragedy. It can deepen relationship and expand perspectives, and it can also lower your bar for buying the balloon at the grocery store. Number three, you may need to redefine what victory looks like.

Small achievements that others take for granted can become meaningful celebrations. Number four, you can convert pain into purpose, like Erin transforming her experience into books that help others, or Laura running [00:35:00] support groups for other parents. Number five, you have permission to set boundaries around your caregiving role.

From pushing back on frequent medical appointments to limiting how far ahead you let yourself worry, establishing limits is essential for sustainable caregiving. Number six. You might find that navigating uncertainty becomes easier with practice. Erin and Laura both developed strategies for living with the unknown, from taking things one hour at a time during difficult moments, to learning to let go of the illusion of control.

And number seven. You can help others understand rare disease by sharing your story in whatever way feels right to you. As Erin said, it might be having a coffee with a friend or writing a book. Every act of sharing helps build understanding. I hope you'll check out Positively Rare, which you can find in the show notes.

I also hope you'll read my memoir, Breathtaking, a memoir of family, dreams, and broken genes. Thanks so much for listening. And if you want to help spread the word and raise awareness about rare disease, share this episode with a friend. Have a great day. Talk to you [00:36:00] next time. 

Music: I've got the whole at my fingertips.

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Come along now, the sky is endless now. We are limitless, we are limitless now. Come along now, the sky is endless now. We are limitless, we are limitless now. Are you with me now? Can you hear me now? When I'm singing out When I'm singing out I've got the whole world at my fingertips I feel like flying, I feel infinite I know that we're the kind to think along Some other lines but we'll be fine Ah, ah, ah, ah [00:38:00] Come along now.

The sky is endless now. We are limitless. We are limitless now. Come along now. The sky is endless now. We are limitless. We are limitless now. Come along now. The sky is endless now. We are limitless. We are limitless now. Come along now. The sky is endless now. We are limitless. We are limitless [00:39:00] now.