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. 

Welcome back to the show. Before we get into today's episode, I want to share some exciting news. Thanks My memoir, Breath Taking, just received its 100th review. It means so much to me that the book is resonating with people and that readers are actually taking the time to share their thoughts about it.

If you have read the book. I would be so honored if you'd consider posting a review. And way more important, if you haven't read it yet, you [00:01:00] can get it in hardcover, e book, audio, however you like to read your books, wherever you like to get your books. Breath Taking: A Memoir of Family, Dreams, and Broken Genes.

Now on to today's show and our incredible guest, Kristin Jarvis Adams, author of the award winning book, The Chicken Who Saved Us. Kristin's story is one that is going to touch your heart and inspire your soul. As the mother of a son with autism and a rare genetic condition, Kristin found herself on a journey she never expected.

One that led her through years of hospital stays, medical mysteries, and a life saving bone marrow transplant. But amidst the chaos and the fear, Kristin discovered an unlikely source of hope and communication, a chicken named Frightful. This chicken became the key to unlocking her son's world and navigating the complexities of his medical care.

It's an amazing story. Kristin and I talk all about the unlikely friendship between her son and his chicken, [00:02:00] and also how to find joy in the smallest moments, cultivate a community of support, redefine hope. Get ready for a conversation that is going to make you laugh and cry and maybe even see the world a little bit differently.

Without further ado, I bring you Kristin Jarvis Adams.

Welcome to the show, Kristin. 

Kristin Jarvis Adams: Thank you for having me. I'm looking forward to it.

Jessica Fein: In reading your book, there was so much I related to in your story. Fear. Hope. Loneliness of raising a critically ill child. But before we get into all the things that I did relate to, I wanted to start by talking about one thing I really didn't relate to, which is in many ways the crux of your story.

So tell us about your son Andrew's relationship with his chicken, Frightful. 

Kristin Jarvis Adams: Yes, well, my son Andrew has autism and also has a [00:03:00] myriad of other kind of additional genetic issues that we have been dealing with lifelong and especially during the story, but he wasn't speaking very much at all. He wasn't completely nonverbal, but his words were very limited.

Like somebody would say, Hey Andrew, I heard you went to your grandma's house and he would say, I like peanut butter. I would know because I'm kind of his professional translator, that every time he went to grandma's house, she would let him make a JIF peanut butter sandwich. So he was relating, but in a very kind of cryptic way.

So we went one afternoon, took the kids on a Sunday drive and went to the local feed store to get some seeds and, and things for my husband to work in the garden. And they were having a spring chick fest. You could hear all the little peepers in the boxes and in the big bins. And Andrew went over to them and picked up a little chick and just carried it across the store and came up to my husband.

And I has said, [00:04:00] she's my new best friend. She will save me. Blew our minds. And, and it was a little bit creepy. What do you mean? She will save me. 

Jessica Fein: How old was he at the time? 

Kristin Jarvis Adams: He was eight years old. 

Jessica Fein: And at that point, were you feeling like he needs saving? 

Kristin Jarvis Adams: Not at all. So this, this was just a really, first of all, surprising thing for a virtually nonverbal child to say is his first sentence to mom and dad.

But then tacking that on the end, she will save me, really got my anxiety going, because I kept saying, Andrew, I don't understand. What do you mean? What do you mean? And he didn't really say much after that. But of course, we went home with 10 baby chicks and then had to build a chicken condominium in our backyard.

But that really was the very first opening for us to be able to step into Andrew's mind and understand his language. 

Jessica Fein: So how did the relationship between Andrew and Frightful [00:05:00] evolve from that point once you brought Frightful home? 

Kristin Jarvis Adams: He just continued to single this one chick out. We had 10 chicks at the time, but he would single her out and carry her around and talk to her.

And he was very, very tender and very gentle. Even his voice became kind of sing song, where when we had heard words from him previous, it was very stilted. He just didn't have movement in his voice. And with her, he would be very sing song. And as we got to just witness this friendship between them happen, we noticed that the little bird was talking back to him.

And as much as he was engaging with her on an eyeball to eyeball level, She was peeping or just kind of talking fluffing her feathers and they just developed this friendship I always wondered if Andrew knew she was a bird and if she knew Andrew was a human 

Jessica Fein: I love that and in [00:06:00] fact you say that Andrew's bilingual, right?

He was fluent in English and chicken Okay. So now you've got a chicken and Andrew's 8. You've had some symptoms. Beyond the fact that Andrew is autistic, there have been some now medical things that are happening. You embark on a bit of a diagnostic odyssey. 

Kristin Jarvis Adams: Yes. A big journey. When Andrew was young, very young, like maybe three or four, we just started noticing that he would be sick kind of on a cyclical basis.

Maybe every 28, 30 days, he would get a fever. He would. get real fussy and be sick. And then he started getting like little ulcers, like canker sores on his lip and his mouth. And every time I brought him into the pediatrician, Oh, well, maybe he got something at daycare. And I'd say, well, he doesn't go to daycare.

He's home with me. Oh, well, he picked it up at the grocery store or, Oh, he's at the, He just has a cold. The flu is going around. And of course, my mommy radar was starting to go off and say, huh, [00:07:00] this isn't right. He's not around big groups of children and something doesn't feel right. I started keeping a calendar and it was like on the date, 20, 29 days, boom, he would.

Have these same symptoms in the same flare ups happening. So it took a long time for me to convince his medical team that, Oh yeah, we might want to look deeper into this. It took really until he was about eight, right when he's developing this friendship with the bird that I was in the house doing laundry and he's sitting with his bird that he named frightful, which was also a very interesting name for an eight year old boy.

Okay. To name this cute little chick and he was sitting on the front porch and I'm just kind of walking by Listening and he says to frightful. I think my body's trying to kill me that right there sent us on a course And and a journey I didn't have the right boots to wear to walk along this [00:08:00] journey. It was a big deal.

We started going to specialists and a variety of people. And we found this research immunologist who also worked with geneticists and he said, Hey, can we do a DNA swab? Because I just, I'm kind of wondering if there might be something that we don't see on the outside. So it took three months. for it to come back for them to do a genome map.

And this is in the early to mid nineties when the human genome and that discovery was just coming out. When the doctor came back and said, well, he has this genetic anomaly. He called it a misprint that is called trisomy eight mosaic. This guy, because he's a researcher, was almost giddy. He was just so excited that he had discovered this.

And I'm a mama thinking, I don't really want to be excited. I want you to tell me how we can fix it. And he's like, and there's only 52 cases in the world. Immediately, there's just that [00:09:00] wash of panic and trauma and pain for this child who not only has a very significant learning disability, but we also have this child who's got this funny little body that.

Nobody really knows, like they would draw blood work and they'd say, Wow, we've never seen cells that look like this. 

Jessica Fein: Oh, isn't that the worst? And you're like, we do not want to be the one that people are saying like, Oh my gosh, come in here. You got to see this. 

Kristin Jarvis Adams: Can we write a paper about it? 

Jessica Fein: Yeah, exactly. I totally understand that.

I loved your vulnerability. One of the things that you wrote about so vulnerably is your fear of being home alone. with Andrew. When these symptoms would flare and when he'd be in so much pain and with the fevers, you didn't want to be home alone with him. It was scary for you. And I related to that when we brought our daughter Dahlia home from the hospital when she was nine and she now had a tracheotomy.

So [00:10:00] she was ventilator dependent and she had a feeding tube and just so much And I remember being petrified and I was like, why does anybody think I'm qualified to do this? And it was such a strange thing to be afraid to be home alone with your own child and you shared that. So can you tell us a little bit about that?

Kristin Jarvis Adams: Yes. So very parallel to you. Andrew had. Spent really the bulk of his childhood in and out of the hospital. There were stints that were a year and a half long or two years long. 

Jessica Fein: I have to pause right there, you mean stints where he'd be in the hospital for a year and a half long? 

Kristin Jarvis Adams: Oh yeah.

Sometimes he would give us a pass. It's where my husband could bring the minivan up, pick him up, and we would have two hours between pain meds. So they'd give him a pain med, wheel him downstairs, put him in our car, and we could drive around the hospital and then come back so he could get his next pain med.

Jessica Fein: [00:11:00] People need to know you had another child during this time.

Kristin Jarvis Adams: Oh yes, yes. He has a younger sister who was three years younger. The juggling and the dynamics. Which I'm sure you are also familiar with, you know, we call ourselves the tag team parenting. We would do the handoff, oh, you get to be home with Hannah now for the evening and I'll spend the night and you come back when I head to work.

I woke up one morning in the hospital and I thought, I haven't seen my husband for 56 days. We never even crossed paths. We would say, okay, I'm leaving the hospital and he'd say, I'm leaving home and we might talk to each other on the drive and wave if we saw each other on the freeway or pull over and say hello and boom, we would make that trade.

And I think what happens is. The marriage relationship and the familial relationship and relating to our daughter, it just goes to this whole other level that is survival mode. 

Jessica Fein: Survival mode. But God, you were in survival mode for so long. Long, [00:12:00] long time. I don't know about you, but I found when we would do the trade off, and we were not there for that duration, our longest was three months, but even within that time period, I found that when it was my night in the hospital, I dreaded it.

I hated it. I was scared. I didn't sleep. I wanted to know what was going on at home. And when it was my night at home, I hated it. I wanted to know what I was missing at the hospital, what was happening. I mean, I was so scared. Of two laces all the time. And wherever I was, I was just consumed with what was happening in the other place.

Kristin Jarvis Adams: Yes. It was definitely this split. I had one foot in this world and one foot in this world, and I never felt fully in balance. 

Jessica Fein: Yes. And you also had a third leg because you had a job. You were very conflicted about leaving the job. You said that my job is just as important to me as my job of being a mother and you felt confident and it was [00:13:00] such a key part of your identity and you knew how to do it.

How did you ultimately come to the decision that you did not in fact have a third leg? 

Kristin Jarvis Adams: I think it was, the decision was forced on me because you just only have so many arms and legs and so many hours in the day. I remember getting news. We had been in the hospital for a while and I'd been doing that three way juggle and, and I really hadn't shared.

with a whole lot of people or my clients exactly what was going on. Like I would say, okay, let's meet at 10 at this place. And we're going to do this. And they didn't know that I had slept in the hospital and I was wearing the same clothes I had on the night before and show up. And. try to be professional, and then I would turn around and go right back to the hospital.

Jessica Fein: You talk about your clients, you were a designer. So meanwhile, you're doing something that's kind of about how things look and appearances, and you're coming in and like quickly changing costume to go into the meeting and then changing back into hospital mode. 

Kristin Jarvis Adams: Yes, [00:14:00] yes, and it was crazy making, I mean it was obviously ultimately not healthy for me to do that. And the day that my husband finally said, honey, you know, something has to give. And when I had to make those phone calls to all of these clients that I was in the middle of a job, since I had to say, I'm sorry, I can't do it. And good luck finding someone else who can pick up in the middle of a project.

I mean, I was just crushed. 

Jessica Fein: Did you share why you had to do it? 

Kristin Jarvis Adams: I think I was just so protective of my world and my life that I don't know that I shared the whole truth, like the nitty gritty of how bad things were. But it was very remarkable when I did start sharing that, how people came and surrounded our family.

But I had to be willing to be utterly vulnerable and say, This is really, really bad. This is the picture of what it looks like. And I was [00:15:00] afraid. Because I thought, oh, people are going to make some kind of a judgment. But they didn't. They surprised me. People want to help. People want to surround you. And they showed up in remarkable ways.

Jessica Fein: Well, we got to talk about that because my goodness, your community is something I've never seen anything like it. And I get that. I totally agree with you. I used to be such a private person. I mean, now you and I have both published memoirs. So clearly we've gotten over that need to be private, but it was such a powerful lesson for me to realize that nobody can support you if they don't know that you need support.

If they don't know what's going on, they can't show up in a way that's really going to be meaningful. all. That wasn't comfortable for me. 

Kristin Jarvis Adams: Oh, not at all. It was very hard and it was probably even a source of not necessarily conflict, but misalignment between my husband and myself. He very much wanted to keep things under wraps and very much wanted to try to have our [00:16:00] life look normal because we wanted to be included in our peers.

Normal everyday lives, but it was far from normal. 

Jessica Fein: It was far from normal. It's so interesting. I was just talking with a friend of mine about this last night. We were talking about it in the context of grief, but it's exactly the same in the context of having a very ill child having experienced both of these.

situations, I can attest to that because what we were talking about was she said, well, I don't want to talk about this with them because they'll see me as being really different. But you are. So when you don't talk about it with them, then they say things that come across as insensitive. Right? It's like a no win situation for everybody.

It's a no win situation for the friends. It's a no win situation for the person, yet you figured that bit out. And my God, these friends of yours, I was like, where do I find these people who like came in and took over all of the minutiae and the day to day for you? 

Kristin Jarvis Adams: So it was really interesting. It was kind of the great friend and [00:17:00] community migration because we had had these friends in this community that we had built over years.

And when things got really difficult and we're up against a wall and scary for someone from the outside, seeing what was happening to our son, what was happening to us and we didn't know any more than they did for a long, long time. There were some people that couldn't, they couldn't walk along that path with us.

I think it was too scary or they just didn't have the tool set or weren't comfortable to do that. So they kind of pulled away and then there was this grassroots. group of people, I wouldn't have expected that they would be able to come in, grab us by the hand and walk through the fire with us. And that's the thing that was so amazing.

I mean, I really started to become aware of the nature of human nature. You know, whenever there's a disaster, you hear about it on TV or whatever. [00:18:00] You hear these people that show up, they get on planes, they fly wherever, these humanitarian desires. To walk alongside and help people out, and that's what I experienced in such a tangible way, and I think one of the things that I wrote about that still to this day sticks out to me is, you know, John and I were doing the tag team thing, and it was my turn to race home from the hospital, stop at the grocery store.

Pick up some groceries and show up at home before a gal from church was going to drop my daughter off. And then of course we were going to pretend that we were having a nice family dinner together. I got to the grocery store and I was standing in the toothpaste aisle and I could not make a decision between Crest and Colgate.

I was so overwhelmed by trying to figure out how to get toothpaste and put it in my cart that I was just weeping. And there was this young mom, younger than me, and she had a kid in the cart. And she just [00:19:00] came and walked up alongside me and said, are you okay? And I, I don't even think I could answer. And I said, I have to make dinner.

And she said, okay, I'll help you. And she grabbed my cart, took me around the grocery store, threw everything in it. She said, do you like tacos? I said, yep. And she threw all the ingredients in, put me through the checkout line, paid for my groceries. She has an empty cart and a kid on her arm takes me out to my car.

Okay. Unloads it and I think I was probably mute I didn't even know how to respond and she said you're taking care of tonight bless you and I Got in my car, and I'm choking up right now, and I just cried I'm still to this day so stunned that this woman had an open heart And open eyes to be able to look and see that I was nowhere near okay.

And she just knew how to step in and the blessing that she gave us when I went home and my daughter and I cooked dinner [00:20:00] and sat and ate it together was just astounding. That's just one of many instances, but what sticks out to me. 

Jessica Fein: It is astounding. You know, most people, and I'm sure that I would include myself in this most of the time, would see a person by themselves crying over toothpaste and be like, Oh, please, you know, keep walking.

Share with us then what happened. How many years was it before you found out that your son was going to need a bone marrow transplant? 

Kristin Jarvis Adams: So, this whole medical journey really got rolling when he was about 8, right, when we got Frightful the Chicken. And it was until he was 16, you know, he would try to go to school a little bit, then he'd be out for two weeks, and then he'd go for five or six days, and then he'd be out.

And when he was 16, basically, my husband and I cried uncle and said, he can't continue on [00:21:00] with school. He went into the hospital and that's when he started his very long stints at the hospital. And it took me from age 16 to 18 for them to even come up with an idea of a solution. I mean, I think I might be, uh, like, armchair pharmacist at this point because the amount of medications and drugs that we tried, big medications and drugs, and we would throw it at him and his body would throw it back.

At one point we were doing prednisone IVs every day. And it still couldn't calm down this fire that was going on in his body. It was eight years, and that was a really, really long time of not knowing. But then even when the doctors kind of concluded, Well, we can try an experimental bone marrow transplant.

But you've got about this much chance of survival. We were like, where do we sign? [00:22:00] Quality of life was that big. And we figured it was an even trade. If the quality of life is in a hospital bed hooked up to pain meds, it was worth trying. And I had to give over faith in medicine to maybe be able to change the trajectory of my family's life and my son's life.

Jessica Fein: It's interesting that you use the word faith because that's such a big theme in your book. And you talk a lot about your faith and your relationship to God and how these helpers, if you will, these friends, the woman who had this most beautiful way of reading with Andrew, just these different players along the way, how there was a godliness to them too.

So how did your relationship with faith and God evolve over this time? 

Kristin Jarvis Adams: Massively. It was a big, big transformation. I'd like to say that I started out with the Sunday Church [00:23:00] Service version of my faith and God. And for, I think, a lot of people, they can relate. To, you know, a faith that neatly fits in a box, nothing about my life fit into a box.

Everything was going every which way. And I really had a struggle. I was really angry at God and I was really frustrated. And I was trying to understand. Stand. Who or what is God? And do I actually believe that? And how come I feel like I'm doing all of these right things that were prescribed in my Sunday school religion, and yet none of the outcome is happening.

A plus B was not equaling. C. And so throughout the book, my faith is morphing and changing, and my understanding of how could a higher power even be at play in here? What would this look like? I've had a fair amount of arguments and [00:24:00] yelling matches with whoever this higher power was. You know, in the end, I came to something that I describe in the book that these people that just showed up even for an instant, like a Starbucks barista who looked at me and smiled because he had seen me every single day from sleeping in the hospital for years.

He never even asked my name, sometimes I'd be in line in my pajamas coming down from my son's hospital room and he'd say, Oh, Kristen, your peppermint tea with a packet of honey is at the end here. I was like, that's God showing up in my life. These people were the hands and feet of God. And so my faith became very tangible.

I could see it. I could feel it. I think that just opened up my whole understanding that there's such a bigger picture than just us, what we can see and hear and taste and feel. And that's one of the [00:25:00] really good positive changes in my life that happened because I look for those every day and I try to be someone else's hands and feet.

Jessica Fein: I love that and I feel like how could you go through this and see and feel the impact that others make by these seemingly simple things and then not want to give that back. And I wonder, you know, so many listeners are saying, okay, I have a friend who's struggling and I would like to step it up right now.

You know, not everybody can do. Some of the really intense things that your community members did. I mean, again, this one woman who like took over all the logistics planning of your life, but what are some things that either people did for you or that you could share that people who are listening and want to do something, what kinds of things made a difference?

Kristin Jarvis Adams: When somebody asked me or my husband, what do you need? What can we do? [00:26:00] And I'm sure you said this, Oh no, no thank you. That's so kind of you to ask, but no, we don't really need anything. That is 90 percent of the time what someone will say in crisis because the last thing you can imagine is burdening somebody else or you can't even think of what you need.

I didn't even know what I needed. So the things that meant the most to us was like when the neighbor noticed our lawn getting long, he'd mow his lawn and he'd come on over and mow ours. And then he started edging it and then he'd get our mail and stick it on the back porch. Little things like that just made a tremendous difference.

I had somebody else A friend that I would talk to and say, if I have to eat one more of these plastic box lunches at Starbucks, I might throw up. And she came and brought a picnic basket with my favorite kind of tea and peanut butter and [00:27:00] jelly and snacks and apples and whatever in a basket. And she didn't even come in and say, Oh, I want to visit with you.

She just left it at the nurse's station with a note. And then the nurse brought it in and I didn't feel like I had to entertain her or tell her the low down. She just brought that because she knew that's something that I would like. Somebody else brought me socks and lip balm. 

Jessica Fein: That's the best for the cozy socks.

If you are ever visiting here's our PSA. If you're somebody in the hospital, bring warm, fuzzy socks. I had something like that. You, what you mentioned with the yard, we had friends who would make sure that our driveway was plowed or shoveled out or whatever, you know, that was such a big thing so that we could get to our front door.

And that was tremendous. And also the picnic basket thing. It was interesting. I remember we were there for a really in the hospital. We'd been there for so long and we had had like people would bring chocolates or people would bring, you know, kind of indulgent [00:28:00] food. And I'll never forget this one friend came over.

She went to Whole Foods and she brought two bags of healthy stuff because you start to feel so gross, you know, I mean, yes, there's a feeling like, well, I deserve all the chocolate in the but you also need to kind of balance that with some healthy stuff. Yes. 

Kristin Jarvis Adams: Yes. And the simple things, like you don't even think about it, like one of the things in the back of my book is I, I wrote a survival guide and the one that people will always just write me a little note about is bringing your own toilet paper to the hospital.

It's just dry, crispy, institutional toilet paper. So do that. And then also they have all those HEPA filtration systems. So everything gets dry. So it was the lip gloss and hand lotion. little, little things that I wouldn't have thought of, but are the things that was like, Oh yes, I need that. 

Jessica Fein: You know, I had somebody bring very early on, a really great comforter [00:29:00] and a pillow.

And I thought, huh, it didn't even register with me. And then that turned out to be the Best. Because first of all, as the parent, we're sleeping on something that like maybe has a little bit in common with a mattress, but not really, not really comfortable. And so this idea of having at least a yummy comforter and a good pillow that made a big difference.

You wrote that quote, you discovered a willingness to change was not only the secret to survival, but the secret to happiness. And out of that would come joy someday. Did joy come? 

Kristin Jarvis Adams: Yes, but you have to look for it. I think one of the things that I learned is there was the difference between happiness and joy, and in our culture and in our language, we don't separate them all the time.

Happiness is conditional, but joy is a state of being. So I had to practice that. I had to [00:30:00] practice joy in the midst of the really, really messy parts of life, and that was a very intentional thing that I did. 

Jessica Fein: How in the world do you practice Joy? What does that even mean? 

Kristin Jarvis Adams: I think the biggest thing for me is somebody said, Kristen, look for the little glimmers of light.

In the middle of the muck, in the middle of, I would describe that I felt like I was on a freight train going through an endless tunnel and the tunnel had all these twists and turns. There was no chance for that light at the end of the tunnel. I couldn't see it. I, I had even no idea how long that tunnel would be and I was living in it and there was this sense of my life rushing ahead of me and I couldn't.

Stop it. And they said, well, where can you find the light in that? And I'm like, I don't know. Nowhere. I don't think so. And so she was just really good at saying, well, think about it. Where can you find the light? And I would kind of [00:31:00] imagine, you know, when you go through those tunnels on a train and there might be a crack or a chink in the rocks.

Cause we'd gone to Europe years ago and went through the Alps or we would go through these train tunnels and all of the stones that they built the tunnel with are just really, really old. And sometimes there'd be like a little chink in it and a little piece of light would come in. So I kind of started imagining that, am I going to see a little bit of light coming in?

And so I still, every day in my life. Every day, even when I wake up and it's sunny and it's a wonderful day, I'm looking for those little glimmers of light and then trying to label it as joy. That's my piece of joy. I'm going to hold on to that today. So yes, indeed. I do think it is a practice and I think it is a choice.

And am I always able to find it? No, no, but I know how to find it and I know how to get there and I [00:32:00] know what it feels like. 

Jessica Fein: It's beautiful. So now you're back there, you're in the hospital, you're like, where do we sign up for this next huge step where another major player enters the picture in the form of your daughter, who turns out is a perfect match for your son.

Kristin Jarvis Adams: Yes, that was tricky as well. Once they decided we're willing to do an experimental transplant and they were really trying to figure out the protocol, the kind of meds, how they would do it because his disease was Was very tricky and unpredictable. And of course they didn't have a roadmap for it. So they were making it up.

Their message to us was your son has a very unique DNA structure, blood structure, we're going to go to the national and global registry for donors. And see if we can find a close enough [00:33:00] match. And they said, well, one of the other things that we can do is test your daughter. So they tested her as a match.

It was like another month in the hospital waiting to get the results back. And my daughters came back and the doctor called me and said, Are you sitting down? And I said, well, I am now. And she said, we just found out that your daughter is a 10 for 10 match. On all 10 aspects of the blood work and the DNA, but she does not have your son's disease, which is that trisomy eight, which was again, very unusual that she would be an absolute match to my son yet not have that genetic anomaly that he has.

But there's also ramifications too. She was a minor at the time, and so we were required to go in front of an ethics board. Then one of the questions was, do [00:34:00] you realize, or are you willing to put both your children at risk? That's a really, really hard question. And I think the thing that we ran up against is when we told our daughter she was a match, She said, Oh, great, fine.

Let's just get on with it and have a normal life. Like all my friends, she was 15. And again, more weeks and weeks of this process and really having my daughter understand that she did have a choice in this. She didn't have to, we weren't pressuring her and saying, you have to do this, but also knowing and rephrasing that this is giving your brother a chance for a new life.

This was all part of that messiness. 

Jessica Fein: All part of the messiness. And even after the procedure, and even after you're all allowed to go back home, you're still in what is by no means a quote unquote normal. And even [00:35:00] somebody says to you along the way, kiss normal goodbye, like that's never coming back for you.

And you had to live for a long, long time in a very different kind of reality as you waited to see whether this was going to take. 

Kristin Jarvis Adams: Yes, they say a minimum of a year. So for a year he had to be quarantined and that word was not like, now it's a household word since the pandemic, but at that time to have them say you are quarantined, he couldn't leave our house for a year except when he went to his medical appointments, but we had to have masks, hats, gloves.

Food prep, everything. I had to bleach all the food that I brought in giant tubs. before he could even touch him or before I could put him in the refrigerator. It was a protocol. Our house had to be bleached. It was just so, so much work. And like you, bringing your child home, you know, we had NG tubes. We had Hickman [00:36:00] lines.

We had to draw blood. We had to give him infusions at night. So I know you're very familiar with that. And when we came home with a grocery bag full of drugs and a time chart of when he had to have them, which I'm sure you had. It was like, you're going to trust me to keep this human alive? How about if I just leave him here?

By that time, I'm like, He's much safer in the hospital than at home with me. 

Jessica Fein: How did you ever stop being afraid? How did you ever get over the hump of like, every single thing is a risk? Or did you? 

Kristin Jarvis Adams: I think that overwhelm and that feeling stays with you forever. But I was able to live with it. You know, when he was in the hospital right before transplant, they were bringing us papers and saying, Hey, we got to put him on hospice care.

Yeah. You can leave him here in the hospital or bring him home. So he was technically going into hospice care so he could get the type of meds and [00:37:00] the care that he would need. But I had a moment where Andrew woke up. He had been having pain meds around the clock for weeks and weeks and weeks and weeks.

And he woke up and he, in his very profound way that he does, said, mom, am I dying? And he, at this point was about 18. I just looked at him and you know, there had just been so much pain and terror in the room. And even the doctors, I mean, they were all nervy and jumpy, but at this piece came on me in the room.

And I just remember answering him. And I just said, you know, honey, I don't know. I don't know, but God knows. And whatever that looks like, I just feel like there are hands on you and there are so many people praying for you that I think there's a lot of noise going on in heaven. There's a lot of racket being, you know, I was trying to paint this picture for his kind of childlike view.[00:38:00] 

He might've been 18, but he's still kind of maybe around 10, 11, 12 in many ways. And so I painted this pictures of these superheroes with swords and all of these things, and they're fighting the bad guys in heaven on his behalf. And he just looked at me and he said, okay. I just wanted to know. And he went back to sleep.

And for that little moment while I was painting this picture of, you know, this kid who likes the Star Wars and the Warriors and all of this stuff, I painted this picture and I believed it and I was in it and I let go. Instead of being resigned, it was like I relinquished my son. And said, okay, you can have them, whatever is going to happen.

I know it's the right thing. I know it's going to be okay. And so I had one of those glimmers of heaven, those little tiny windows of heaven that opens up. And I use that term, it could be anything, but for me, it was like a window into heaven where I had this [00:39:00] piece that if I lost him the next day, I would be okay.

And he would be more than okay. My husband would be okay. And we were okay. It was just this beautiful, probably two minutes at the most. And then the world rushed back in. But I still remember that feeling vividly and I feel like that was a tremendous gift to me and my mama heart to know that whatever happens even now in the future, I kind of draw back on that.

He has a funky body. He has a funky DNA. There are unique medical things that come up with him. How long he will live? I don't know, but I have this sense of peace in knowing that he is loved and cared for and there are hands on him and. He's okay. It's the practice, like seeking joy rather than sitting back and saying, okay, I hope I feel joyful today.

I have to seek it [00:40:00] actively. 

Jessica Fein: Well, it's interesting because the other thing that you talk about being active about is hope. And hope is a big, big theme of my life as well. And you talk about finding hope in unexpected places. Now, presumably frightful was an unexpected place to find hope, but what other unexpected places do you find hope?

Kristin Jarvis Adams: I would think, you know, in that situation that I just described with Andrew in the hospital, I had hope in just that knowledge that it didn't have to be a certain outcome that I wanted or that I pictured. that the outcome would be the right outcome. So that might be a little bit out there and I'm trying to explain it, but I mean, even finding hope through things that happen in my daily life or an opening that I can recognize that I can step into somebody's life and offer something as simple as a smile.

Or a compliment, [00:41:00] because I don't know what their story is, but I bet they have a story. You know, the grumpy, surly person who wants to cut in line in front of you or whatever, and my instinct is like, no, I was here first. But to really put myself in check and say, Okay, I don't know their story. And then maybe strike up a conversation or whatever.

I think that brings hope into a situation, even hope in our fellow human beings, but definitely finding hope in this chicken and being able to talk to my son through the chicken because I would talk to him and then my son would answer for the chicken. So he would talk about himself in the third person most of the time.

Jessica Fein: And this kind of communication with the chicken was even when Andrew was in the hospital, you even found a way to bring the two of them together because it was such an important method of communication for you. Can you tell us how you did that? 

Kristin Jarvis Adams: Yeah. So that was his sister's doing. She took an [00:42:00] iPad and we wired it to the outside of the chicken coop, right down low where the chickens.

The chickens are walking. It's a little fence and wired it there. And then Andrew had a iPad in his bed and then we had a FaceTime connection and the chickens would walk around and Hannah would have frightful in her arms and she would peck at the screen or whatever. And Andrew would have this back and forth conversation.

And I kid you not that chicken recognized his voice. Oftentimes, and I think this was very surprising for the doctors because they didn't believe it at first, but they would come in and try to get information from Andrew. Okay. We tried this new med. How does your tummy feel? How does this feel? And he wouldn't answer.

But if we had the FaceTime connection going, I told them, talk to the chicken. Hey frightful. How are you feeling today? Blah, blah, blah. Andrew would reply and say, Frightful is hungry, or Frightful has a hole right here, and it feels like a knife, or it [00:43:00] feels, however it felt, his descriptions were very visceral.

I think for him it was easier to face the pain if it was the chicken's pain, and not him. Frightful feels hungry, Frightful feels sick to her stomach, Frightful feels pain in her legs, whatever it may be. That three way conversation became really the key to success for what we went through and for Andrew's treatment, for the doctors to understand him and get information.

And I'm sure they left the room and said, Oh my God, I was talking with a chicken again today. Yay. Yay. But, you know, in the end, it really was what allowed them to help Andrew in the way that they were able to help him. 

Jessica Fein: Such an extraordinary story. And I do love that at the end of your book, you have the survival guide.

A lot of people who are listening to this show [00:44:00] are in it. They're in the storm that they never expected and that they don't recognize and they're not wearing a raincoat and they don't have a good umbrella. What are three pieces of advice you would give when people are thinking to themselves, I don't know how to do it.

Kristin Jarvis Adams: I think my top piece of advice is looking for those little glimmers of light in the middle of a mud bog. Where can you find the light? You know, is it just holding a friend's hand? Or whatever it may be. I think another thing too is you don't have to have a giant community. You just have to have one 3am peep.

You know, just one person that if you are just at the bottom of the bottom and you need to just vent, you can call them at three in the morning and say, I just need you to listen. Just one person. But I also think if you can be willing to be [00:45:00] vulnerable. Truthful, truthful with others on this is how bad I feel or this is how bad things are.

I don't need you to fix them, but I just need you to listen because I need to get it out of me. I think that is a major key and I didn't understand that and for a long time we kept everything under wraps. As I said, when I finally started telling the truth, then things opened up in ways that I never would have anticipated.

Jessica Fein: I love that. And I would also just encourage to our point earlier on where we were saying, what can somebody do? Another thing somebody can do is to be the person who sits and listens. If you have a friend who is brave enough to share vulnerably and openly with you about what they're going through, don't necessarily try to fix it.

I know I'm a fixer. You're a fixer. Yes. Just be there and sit with them because that is so important. Such a huge, huge gift. 

Kristin Jarvis Adams: Yes, absolutely. 

Jessica Fein: [00:46:00] Thank you. Thank you. Thank you for sharing this extraordinary story with us. 

Kristin Jarvis Adams: Thank you. It was such a pleasure to meet you today.

Jessica Fein: Here are my takeaways from the conversation with Kristin.

Number one, practice finding joy in small moments, even and especially during the hardest times. Look for glimmers of light in the mud bog. 

Number two, Be willing to be vulnerable and honest about your struggles because sharing openly can lead to unexpected support and connections. It's really hard for people to support you if they have no idea what's going on.

Number three, recognize that your faith, your spirituality can evolve and take on new meanings during times of crisis. 

Number four, when supporting someone going through a difficult time, Focus on practical help like mowing their lawn, bringing them comfort items. Take initiative rather than saying, let me know if there's anything I can do.

Number five, find at least one reliable support person you can call at any time. Your 3am peep. 

Number six, be active about finding hope. You might find it in the wildest places. [00:47:00] even in a chicken named Frightful. 

And number seven, my PSA, cozy socks are a great thing to bring if you're visiting somebody in the hospital.

If this episode resonated with you, share it with three friends right now. Also, I've launched a new publication called Fein By Me. Visit my website to subscribe. That's Jessicafeinstories.com. Thanks so much for being part of this community. Have a great day. Talk to you next time.