Finding Joy in the Midst of Adversity with Jessica Fein

Jessica Fein is a mom to three adopted children from Guatemala and is a relentless warrior in the memory of her daughter who she lost to a rare disease in 2022. Jessica is a working mother who balances advocacy in her corporate job, writing (seasoned media contributor who has published more than 100 columns and essays. Jessica has also authored a book, is a podcaster, and does volunteer work as she serves on the board of directors of MitoAction.

In today’s episode, Jessica shares her experiences of parenting on the precipice, caring for a medically fragile child, and finding joy even in the most challenging moments.

• Breaking the Ice in Social Settings:
  How we approach introducing our children to others to help bridge understanding and create an inclusive environment. 
• The Power of Perspective & Advocacy:
  How early guidance from caregivers shaped our approaches to caregiving. 
• Jessica’s Writing Journey and her book Breath Taking
  Jessica shares the story behind her powerful memoir, Breath Taking, which she started writing while in the pediatric intensive care unit (PICU) with her daughter, Dalia. The book is about more than just grief and loss; it’s a testament to resilience and discovering joy amidst unimaginable challenges. 
• Confronting Deepest Fears:
  Jessica opens up about the fears she faced while caring for Dalia as her condition deteriorated. 
• Balancing Fear with Joy & Living in the Moment:
  The delicate balance of living with joy and purpose while managing ongoing medical crises.
• The Resilience of Children and Parents:
  Shared about a local mother making a difficult decision to start Dialysis for her daughter and how parents often need to lean into their child’s will to live and desire to continue. 
• Pearls of Wisdom:
  Jessica concludes with a powerful reminder that joy always has a seat at the table. Finding joy requires intentionality and being open to small moments of gratitude, even when they seem hard to grasp.
• Valerie’s Gratitude Practice:
  Consider starting a gratitude journal. Even jotting down one thing each day can make a significant difference in your mental and emotional health. 

Connect with Jessica:

• Book: https://www.amazon.com/dp/1681151103?
• Podcast: https://www.idontknowhowyoudoit.com
• Website: JessicaFeinStories.com.
• FB: https://www.facebook.com/jessica.fein.92/ 
• IG: https://www.instagram.com/feinjessica/ 
• LI: www.linkedin.com/in/jessica-fein-b643b09 

Final Thoughts:
Joy doesn’t just show up—we have to invite it. Let’s be intentional about bringing it to the table and embracing it, even in the most challenging seasons. As always, I encourage you to Live with Intention and Embrace the Journey. See you in the next episode!

Valerie's Links: https://bit.ly/3RL0da2

Music Acknowledgement: Audio Coffee - Denys Kyshchuk

Editor: Scott Arbeau

Link for book: The S.H.I.N.E. Principle: The special needs mom's path to strength, hope and happiness by Valerie Arbeau

https://www.amazon.ca/dp/B0CW18ZXGX (Canada)

Here's a community for special needs moms to share, uplift and learn from each other...
https://www.facebook.com/groups/specialneedsmomscircleofstrength

Learn more about your host at:
https://coachingwithvalerieanne.com/

Transcript

It’s how do we learn to create a life of joy and meaning in the midst of tragedy and sadness and fear and uncertainty. And you know, you and I share so much in terms of the intensity of those things, but the fact is, none of us has control. We’re all living with uncertainty. We’re all living with different kinds of grief, with different kinds of challenges. And we all want to have lives of joy and meaning, so how do we do that? 

Today, I want to introduce you to a lovely lady. Her name is Jessica Fein. Jessica is a mom to three adopted children from Guatemala, is a relentless warrior in the memory of her daughter, who she lost to a rare disease in 2022. Jessica is a working mother who balances advocacy in her corporate job, writing. She’s a seasoned media contributor who has published more than 100 columns and essays. Jessica has also authored a book, which we will hear a little bit more about later. Jessica is a podcaster, and her show is ‘I Don’t Know How You Do It’, which features people whose lives seem unimaginable and who triumph over seemingly impossible challenges. That would be most of us listening to this podcast. And Jessica does volunteer work as she serves on the board of directors of Mito Action. 

Welcome, Jessica. 

Thank you. I am so excited to be here. Thank you so much for having me. 

You are so very welcome. We are thrilled to have you here. So Jessica, I start off my podcast with the same question. What is a unique thing about you? 

It’s such a good question, and there’s so many different ways one could go with that. But I think that right now, what I’m feeling is most unique is that my book has just come out. Now, clearly, that’s not unique. You know, a lot of people write books, obviously. There are a lot of books out there. But I think what is unique is that I wrote the book while working full-time and parenting three children, one of whom required very, very intense medical care. So right now, I’m feeling like that’s a pretty unusual thing to have done. 

Right. And kudos to you and accolades for being able to pursue your dream of being an author amidst all the challenges of being a mom caring for three children, not just one, three. Wow, congratulations on that. 

Thank you. 

All right. So tell us a little about your special needs mom journey. 

So my special needs mom journey began when my middle daughter, I have three children as we talked about, and we talked about that my middle daughter, you mentioned in the introduction, died. That was two years ago. When she was little at age five, she was diagnosed with an ultra-rare degenerative disease called MERRF syndrome. But I would say that our special needs journey started before that. It started with that mother’s intuition that something is not quite right. And like I’m sure many listeners, I was told over and over, oh, be patient, oh, she’ll catch up. You know, I would call early intervention and get an assessment and they’d say, oh, she’s just on the lower end of average time and time again. And when she was five and she got this diagnosis, we learned that in fact, mother’s intuition, while I was right that something was wrong, never in my wildest nightmares did I imagine that it was something like this. But Dalia’s needs grew over time. MERRF syndrome is a degenerative disease. And so she had a whole host of needs. Early on, some of those were more visible than others. There were things like garbled speech. There was a mild to moderate hearing loss. There was the lack of balance. And as she got older, she lived to 17. Her needs became much more apparent, much more visible as the disease progressed. So that is really when I think about my parenting, a special needs child, that is the very intense journey that my husband and I were on. We also have experience with other kinds of needs with other kids in terms of things like learning differences and ADHD. And I would say for listeners, by the way, because maybe a lot of your listeners have those kinds of needs with their children, that some of those emotional and learning needs can be just as stressful as the medical needs. 

I definitely would second you on that one. Oh my, our journey, we have complex medical needs child, our first one. We had a prolapse cord. So she is total care. wheelchair bound, G tube fed uses a communication device. And our youngest has ADHD and we got a diagnosis a couple of years ago of high functioning autism. So I hear you in the devastation of both. Both are as challenging. And I am just so thankful that we were able to, and this is an episode that I did another time about how we’ve set Melody Anne, our oldest up in her forever home. Because had I not done that, I think I would be totally gray. I might be in a mental institute by now because the challenges that came with our younger child came after we had set up our oldest one and then it was just our youngest and my husband and I. So I totally hear you, the devastation and the amount of stress, the amount of work that it is to navigate medically complex, as well as emotional and intellectual. 

It’s so interesting that we share that and I would say when I’ve told people that,  people tend to be surprised, you know, but for all those years, I will tell you when I was at work and I saw a phone call come in from, you know, my daughter’s school. That was scary, but it was not the stomach, you know, sinking to my toes feeling when it was from my other child’s school. So, you know, it’s just different. 

Absolutely, absolutely. So Jessica, you had mentioned to me before that reimagining motherhood, that was something that you had to do. Can you tell us a little bit about what that looked like for you? 

Yes, and I feel like that is something that happened and frankly continues to happen over and over and over again. So my husband and I, you know, like probably a lot of people when they were young and starting out assumed we’d have children the conventional way and, you know, go about it and see what unfolded. And we spent five very intense years trying to do that in increasingly creative ways with more and more outside assistance from the Boston Medical Community. And ultimately after five years we pivoted and we embraced wholeheartedly the idea of adopting children. So that was really the first dream change. And it was a great one because we were in control of it. We were excited about it. It made sense to us. And so that was, you know, this is going to look different than we thought. And we did as we’ve talked about adopt three children from Guatemala. And then we thought, okay, now we’ve got our brood and now we’re going to go about that dream that we had. Our family looks different than we had imagined and it’s more interesting for sure. But we thought that that was kind of the path we were on. Over and over again, I’ve had to reimagine it as things have changed in such precipitous and ultimately devastating ways. So, you know, beginning to understand what it might look like to be the parent of a child with special needs and then again with severe medical needs. And then as those needs continue to change and evolve over the years, over 17 years, it was a constant reimagining. It was a constant. Am I strong enough? Can I do this? And also learning that, yeah, we, you know, I think for a lot of us, no matter what the circumstances are, we think, okay, I don’t know if I could do that. And that’s actually, you know, the name of my podcast is ‘I Don’t Know How You Do It’, tongue in cheek, because we do, right? We do it. 

We totally do it. And yes, I look back and think, how did I ever do what I did? And I’m sure our listeners can totally relate to and identify with that statement. So I’m going to take you back on your journey because I too dealt with infertility and it’s not something that’s talked about. And I found it tough. And as I was reading your book, I saw that we, our journey was very similar. 

Too bad we didn’t know each other. We could have been supporting one another. 

Right. And I remember similar thoughts of if I have to go to another baby shower and put on that smile and pretend I’m overly excited, when is it going to be my turn? And I can certainly relate to the, every month mother nature coming to visit and the devastation and the disappointment and the frustration. And I’m not going to tell you how many tantrums I had. 

I can imagine. 

Yeah. It was tough, but we were seven years. We were seven years. And then by the time I got to 39, I’m like, you know what, I can’t, I can’t do this anymore. It was such an emotional drain on both Scott and I. And so we decided that that was it. We were done trying by the time I hit, it was actually my 38th birthday. And then would you know it, the very next month we were pregnant. 

Oh, wow. 

So we were fortunate in our story. I know your story was different, but I love that you were able to embrace adopting some children because there are many that can use a loving home where they can thrive and develop and be the best person they can be. So I just want to commend you for taking on that journey. 

Oh, we got so excited about it that that dream made so much sense to us once we came to it. And it’s interesting. I do write a little bit about the fertility journey in the book, but I actually wrote a lot more about it and it didn’t make it into the final book, but I loved that section because even just going back to the absurdity of it all now, all these years later, I can look at it, you know, through a different lens, right? I’m not looking at it through quite the roller coaster of emotions that it obviously was. And I mean, it’s so absurd when you think about all the things you do and all the places you do them in terms of shots and different people who are involved in everything else. So I actually had a lot of fun writing about that part. So I may maybe have to figure out where to get that piece out because I know so many people do go through fertility journeys and it can feel so isolating. 

Absolutely. And the older I was getting, the less I thought that this was actually going to happen. And we too had considered adoption, but that’s quite the process as well. 

Oh, yes, it is. It absolutely is. 

Yeah. So tell us a little bit about your process. 

The thing for me when we came to adoption was I loved the idea that, I mean, it’s ironic to say now, but that there was a certainty that we were going to end the process. That is, yes, quite the process, but we would end it with a child. That was for sure. And after all these years of not knowing and hoping, and I wanted that this will happen. So it felt like we had suddenly some control, which is so bonkers because there was no control. Obviously, there never is. None of us has control, but we like to imagine that we do. And I was able to imagine that once we turned to adoption. And so, you know, for us, once we got to that point, we just felt like, let’s go international. Like that felt good to us. It felt like, let’s just wrap our arms around this adventure and do that. It was interesting because my eldest sister adopted at the same time and she wanted domestic to adopt domestic. And it was very funny because we were kind of going through this together. And yet we had such a different instinct about how we wanted to get to our children. But we didn’t really have a connection to Guatemala. We would just learn about all the different countries, kind of how adoptions worked in the different countries. And we toyed with some others and came kind of close. And ultimately, we chose Guatemala because we liked certain aspects of the program, you know, foster care rather than group care, et cetera. And then once we had adopted our first, we were quite clear that we wanted all of the children to have been born in the same country. 

Cool. So how old are your children now? 

Our eldest is 22. Dalia was our middle. She died one week after her 17th birthday. And then our little guy is now 17. 

Wow. Well, interesting. My oldest is 22. And my youngest one is 19. 

Ah. Yes, we totally could have been going on this journey at this time. 

Yes, we could have. 

All right. So many of us have encountered different responses from people when they meet our children, from ignoring our children to staring at them, to engaging them, and anything in between. So what has been your personal journey with respect to this? 

Yes. Well, I love this question because I feel like I learned so much. I before being a mother in this situation thought when I would see somebody who looked different, well, the polite thing to do is not to stare. And I was very clear with my kids about that too. Don’t stare. Don’t be rude. To the point where one time I was in an elevator with one of my kids and there was a mother and her son in the elevator with us. The son was in a wheelchair and had some very visible disabilities. And my kid said to the mother, what’s wrong with your son? And I was mortified. Mortified. Apologize. I’m so sorry. I’m sorry. And the mother said to me, don’t apologize. I would much rather have somebody come out and ask me. But the kids are the only ones who will do that. And I thought, oh my goodness, I wouldn’t have thought that at all. I was so confused and just didn’t understand kind of. But I was grateful that she told me that. And then, of course, I became that mother. My daughter ultimately looked quite different. She had a tracheotomy and she was attached to a ventilator. So for people who might not know, she had a tube coming out of her neck and the machine that traveled with her. And she had to wear goggles and she had hearing aids and hand braces. And she was in a wheelchair and a G-tube and the whole thing. So we encountered all of it. We encountered the staring. We encountered the looking away. And I will say that the looking away hurts. Because imagine you’re a kid and when people run into you, people see you, they turn their heads. How painful. And I know those people because I was that person are trying to be respectful. So I love to share this message that that’s not necessarily the thing to do. Now I will say we had a lot of staring. And my other kids in particular were so offended by the staring. They couldn’t stand that. So what do you do? You smile. You say hello. Right? You ask a question. You compliment the kids, you know, I don’t know, t-shirt, whatever. Hold the door. There’s so many things you can do to engage and to say I see you without staring. 

Yeah, absolutely. Absolutely. And that was one of the things we learned to do early on as well. We were fortunate we had a caregiver named Kathy. She now goes by Katie. And she worked with our family as an aide with our oldest Melody Anne, and then she stayed on and worked with our younger one because I was trying to give our younger one the opportunity to do art, which is not my thing. And just to have somebody kind of take Ebony outside and do stuff while I was home with the older one, Melody Anne. And so Katie showed us how to engage. So she had been a preschool teacher prior. And so it was just lovely to see her in action. So and as you mentioned, definitely it’s the children that come up. And I love the fact that they have no preconceived ideas. They’re just curious and they just want to know. And they’re not shy. They just ask. 

Right. It’s the same thing as, you know, why don’t, where’s your hair when they see a bald person for the first time or whatever. They just want to know. Okay, now let’s play. 

Right. Let’s get on with it. So Katie would sort of say, hey, this is Melody Anne. She doesn’t speak, but she can understand everything that you’re saying. Why don’t you come over and say hi? And then she would just guide the kids over. And so I loved how she would do that. And so we started to implement that as well. And then engaging the adults as well. And so we would just be the first ones to speak and just introduce her. Hey, this is Melody-Anne and just break the ice because I think a lot of people don’t know what to say. So they don’t say anything, which can be just as rude. 

And I love that you had a caregiver who taught you that we did too. And I talk about her as the main character in my book, our caregiver, Shauna, who was the first one who showed us that we didn’t have to be quite so delicate with Dalia when she became medically fragile. 

Absolutely. Love it. Love it. Love it. All right. So I know that writing is a passion of yours. And we have talked about how many, over 100 essays and columns that you’ve written over the years. So I just wanted you to share about your latest writing project. 

Yes. So my latest, well, my latest, I got to say hot off the press. This week I was in the New York Times with a tiny love story about my daughter. And I was so excited because that’s been a goal of mine. So that I know was not your question, but that is my latest was making it into New York Times. 

Congratulations!!!

Thank you. That was very, very exciting. But I am equally proud of my book Breath Taking. And I started writing this book when we were in an extended hospital stay with Dalia in the pediatric intensive care unit. And I started writing essays actually at first, kind of dispatches from the PICU. And that ultimately was what inspired me to put it into a book form. And this is really not a book about loss in terms of Dalia’s death that actually was not part of the original book I had sold the book prior to Dalia dying. That’s just now in the epilogue. But it is about the journey. You know, what we’re talking about here, this reimagining, this learning that we are capable of so much more than we ever would have thought we were. Is how do we learn to create a life of joy and meaning in the midst of tragedy and sadness and fear and uncertainty. And you know, you and I share so much in terms of the intensity of those things. But the fact is, none of us has control. We’re all living with uncertainty. We’re all living with different kinds of grief, with different kinds of challenges. And we all want to have lives of joy and meaning. So how do we do that? 

Yeah. Yeah. So share with us, Jess. How do we do that? 

Well, you got to read the book. 

Well, just before you get into that, I do want to say that I love the description of your book, this description particularly. So I’m just going to read this. "Breath Taking is more than a story of loss and grief. It’s a testament to the indomitable human spirit and the transformative power of love. Through laughter and tears, Jessica discovers the delicate balance between advocacy and acceptance, vulnerability and strength. Along the way, she confronts her deepest fears, finds unexpected allies and discovers the resilience of a human heart." So if that doesn’t draw you into reading Jessica’s book, I don’t know what will. 

Thank you. Thank you. And one of the best things that I’m, well, I’m getting great feedback in terms of people saying, I feel like we were just having a conversation. Like I was like sitting with a cup of coffee with you or we were on the living room couch talking and having a conversation. And I love that because I really want people to feel connected as they’re reading it. 

So Jess, you talk about confronting your deepest fears. 

Yeah. 

Are you okay to share about that? 

Yeah. You know, I mean, I think that for a long time I was petrified of the idea of having a child with very, very severe needs. I did not think I could handle that. And you know, it’s interesting, there’s actually a scene in the book where we’re meeting with somebody and she tells me that people in general swallow a court or more of saliva every day. And she says to me, you know, there are some people who lose their ability to swallow. And so they need to be suctioned consistently throughout the day. And this was before my daughter’s trachea, before my daughter lost her ability to swallow. And it was kind of a weird thing. I mean, looking back now, like she wasn’t just, you know, making conversation. There was a reason she was telling me that. But at the time I remember thinking, oh my God, what do they do? You know, it just seems like such a horrific, horrific thing. And of course that did end up happening to my daughter. And we thought nothing of suctioning her a million times. You know what I mean? We just, that became part of the care that we gave her. So I think that, you know, any one of the very major things that happened and there were some major, major things, because ultimately, Dalia lost her ability to move. For the last two years of her life, she was frozen. She could not even blink her eyes. You know, that’s, that was pretty petrifying for me. And along the way, some of those things that I thought was, that I was told could happen, that was really petrifying. And then of course the ultimate, right? I mean, we all hear the worst thing that can happen to somebody. I mean, you know, everybody will say it, the worst thing that can happen to somebody is the loss of a child. So, you know, that underlying fear throughout the journey.

I can relate to some degree with regards to the fear of losing your child, because no parent is supposed to bury their child, right? That’s just kind of the way life is supposed to go. And when Melody Anne was born, our oldest with the medical needs, we were told she was going to live a year. So we had a year and I just thought, we’re going to make this the best year ever. 

Love that. 

I was so mad at God because we were seven years trying to get pregnant. Granted, we had a lot of fun trying, but, but it was so frustrating to know that we had worked so hard for seven years to create this baby. I had a beautiful pregnancy and then we had a prolapse cord at the end of it. And then I’m told, I’m going to lose my baby in a year. So we just thought, okay, we’re going to make this the best year ever. But living with, for that first year, the fact that she could die anytime was so difficult because she had a lot of respiratory issues. She’s wheelchair bound, so she’s not moving around. So, you know, the lung issues are prevalent, right? They’re huge. So she was on antibiotics like it seemed like every two months because she was starting, anytime there was a sniffle, we were told she needed to get on a round of antibiotics. And so it seemed like it was every six to eight weeks, she was on something. And so living with that fear of, I’m going to lose my child was so heavy. And yet then trying to balance that with making this the best year of Melody Anne’s life and the best year of our life was so difficult. It was such a delicate balance, but just trying to enjoy the moment. 

And that’s where I had to kind of learn to live in the moment because that’s all I had was just the same. And it was not my foretaste because I was definitely one who was like planning and thinking about the future, future, future. And I learned that I did from watching how Dalia did it. You know, Dalia was there. She was present. She wanted to make it the best time ever, whatever the thing was, you know? And so as the mom, I was like, okay, if she, if that’s what she wants, that’s what we’re going to do. 

Yeah. Yeah. And as you bring that up, and as you were talking about Dalia and her, the progression of her disease to where she wasn’t able to move, I’m thinking of a lady that doesn’t live too far from me, our children are around the same age and she has some kind of muscular dystrophy things. She’s also trach. She’s now 22. She’s the same age as Melody Anne. And they recently had to go on Dialysis. So the mom called me and said, Hey, you know, what do you think? I’ve got mixed feelings. I always said, if it came to my child having to be on Dialysis,  that we were not going to do it, but it was just interesting that she reached out to me. So knowing that she reached out to me, I was able to kind of talk her through, Hey, what does your child want? And I know this child and this child has such a will to live. I knew she was not ready to give up. So I said, you know what, you’ve done the trach. Dialysis is going to be a breeze. 

Right. Once you’ve done the trach. Yes. 

So just am pleased to say that this young lady is doing phenomenal. There’s still a few kinks that they’re working out with the Dialysis, but it’s happening. She’s still got a will to live. She’s still enjoying life and she’s just giving so much. So it’s so great. 

Yeah. Yeah. 

All right. So Jessica, I’m so enjoying our conversation and I know we could probably talk all week. So, but I do like to keep my episodes on the shorter side. So I just want to know, is there anything that you have to share with our audience? 

Oh, well, I’ve so enjoyed talking to you and we do have so much in common. I, you know, invite people to tune into the podcast ‘I Don’t Know How You Do It.’ Check out the book and, you know, visit me on the website, JessicaFeinStories.com or let’s connect on Instagram. I love hearing other people’s stories. I love connecting, talking about what’s happening, what it means to be living and parenting on the precipice. And yeah, so let’s, let’s connect. 

Yes. And I will have Jessica’s information in the show notes. So do check out the show notes so that you can connect with her. And Jessica, do you have anything that you would like to conclude our conversation with? Do you have any pearls of wisdom? 

We’ve covered up on so much wisdom in such a short time. And I do think that, you know, what I would say is for me, one of the things that I learned, and I think it’s what we’ve been alluding to throughout this entire conversation is that joy does have a seat at the table and it doesn’t matter what you’re going through. It doesn’t matter if it’s the most unbearably sad or scary or intense thing, there is still room for joy to pull up a chair. 

Absolutely. And I love that you’ve said that because I think sometimes when we’re in the trenches and our heads down and we’re just making it through day to day, we forget that we can invite joy into our lives. And one of the things I’ve learned as well, Jess, is that you can’t expect it to drop in your lap. You have to be intentional about taking it. 

Yes. 

I love that analogy. Bring it to the table, pull up a chair, come and join me because I need you to get through today. And there are so many moments, even in the hardest days, and I can only imagine what it must have been like towards the last two years of Dalia’s life for you and your family. But I love the fact that you probably did find moments of joy in every day. 

Yes, absolutely. Absolutely. We did. 

Yeah. 

And so I want to encourage our listeners, do find joy in every day. There’s so much to be grateful for. There’s so much to give gratitude for. And I know it’s hard sometimes. I have a gratitude journal. I am in it. Sometimes I’m not. Sometimes I’m in it. Sometimes I’m not. But I do want to encourage you to take that gratitude journal and write in it every day, even if it’s just one thing. You don’t have to write a paragraph. You don’t have to write a whole story. Just one thing to be grateful for because it does so much for your emotional health, for your mental health. So I just want to encourage you, if you’re not doing it already, get a book, get a journal and just jot down one thing every day. All right. So Jessica, thank you so much for being here with us. Loved talking with you. I am so hoping that our paths will connect again at some point. 

I hope so too. Thank you so much for having me. 

You’re welcome. 

And audience I want to remind you to - Live with Intention and Embrace the Journey.