The Della Diaries

Danielle’s daughter Della was a quintessential “good baby.” She slept through the night almost from the get go. She rarely cried! But when Danielle started weaning her, little Della would just … not eat. Could not eat. Her tiny body rebelled against her with every food she tried. When your baby lives with a chronic illness that wants to kill her, each day brings more anxiety. And it’s especially tough when you’re Della.

Transcripts may not appear in their final version and are subject to change.

I’m Nora McInerny, and this is “Terrible, Thanks for Asking.”

[MUSIC]

Gen Z, I love you so much, but you will never know the satisfaction of a filled-up loyalty card. But for those of us who remember, we remember the triumph, the triumph of filling up a Subway Sub Club card and getting a free 6-inch sub. We know how magical that felt, how rewarding, to know that your dedication, your loyalty, paid off … in the form of a free sandwich for every eight that you bought … and we also know the disappointment of having the entire program shut down because some people were counterfeiting the Subway stamps and ruining it for everyone.

But imagine for a minute how great it would be if we could fill up a loyalty card for Terrible Things and get a free … pass on future suffering? If we could just say, “Yep, here’s the proof I’ve been through enough. I’m good!”

It’s not possible — but if it were, Danielle would have filled hers up already.

Danielle was one of our very first guests, all the way back in 2016. She’d recently gone through a truly horrifying postpartum depression episode after the birth of her first child, Marley.

Here’s Danielle from that first episode.

Danielle: I knew I just didn’t feel right. There was no excitement anymore. And like I said, I spent an entire pregnancy excited. But the deep darkness? That came kind of gradually, but every day was worse than the day before, and something else happened to make me a little more paranoid, a little less secure in, “Oh you’re a good mom.” You know, it … it got to the point where I just didn’t want to do it at all. I wanted no part of it.

Back then, Danielle went by her radio personality moniker, Danni Starr. For a decade, her job was to make people smile and laugh every morning while they made their commute into work … while she was stuck in the darkness of depression.

Danielle: I remember when I would click the microphone off, I just remember my body … like, I felt like my body could crumble into the ground. I would sit up to project, and I would sit up to make it come out. And then the moment the microphone went off, it was like my shoulders slumped, and my whole body just kind of crumpled into itself, because I just … it was so bad. It just didn’t feel good. I just wanted to not be doing it. It was so terrible just to have to pretend like that. The Great Pretender. It was so bad. It was literally living a double life, because if you listened to the show, you probably would have had no idea. But meanwhile, my house was dark. My body was cold. My mind was paranoid all the time. Like, there was … there was no reality that was safe in that space.

Back in 2016, Danielle’s best friend Claire stepped in. Claire is a nurse, and her friendship and her professional expertise helped Danielle survive her PPD — and thrive enough to decide to have another child, Della. And as Danielle got ready for this new life to come into the world, she also prepared for the darkness to return.
Nora McInerny: Are you anticipating it with Della? Are you thinking, “Oh, I’m so healthy this time, I’m gonna be able to sidestep it. It’s not going to happen this time.”
Danielle Ferrentino: I didn’t think I was going to sidestep it. I didn’t want to anticipate it. But I did know that I wanted to plan for it. It didn’t mean I was hoping for it. Right? Like I wanted to plan. My best friend Claire, she was with me for an entire month, because we were so worried about what might happen. She was there the first go with the postpartum depression, so she just wanted to be close, keep a good eye on it, make sure I was OK. Unfortunately, Della came so late that Claire was only actually there for like, a week and a half when Della got here. But it definitely helped, and I was pretty prepared. But again, what the hell can prepare you for that? Nothing can prepare you for it. But I was as prepared as I could be.
Nora McInerny: So this time with Della, like, what were the things or the moments where you could feel it happening and identify it?
Danielle Ferrentino: You know what’s crazy is I didn’t identify it the second time. Somebody else did. Because I wasn’t depressed. I was really happy, right? I was like, “Oh my God. I have this baby, and I’m a mom and two babies, and I’m really good at it.” Right? But I was so damn anxious. Like, I had planned both of their funerals — Marley and Della’s funeral. I had planned my own funeral. And that shit seemed normal to me. Like I was like, “Oh, you just plan funerals.” I’m talking about down to every detail. Like, I knew what song was going to be playing. I knew what color I wanted my casket to be. I knew who would be talking, all these things, because, like, that’s where my mind was. It was like, worst case scenario the whole time, right?
Nora McInerny: So you’d be like making snacks for Marley, like, nursing Della and then being like, “When you die, and you will, I’m going to play…”
Danielle Ferrentino: “Another One Bites the Dust.” [laughs]
Nora McInerny: “One Sweet Day.” I was going to say, “One Sweet Day.”
Danielle Ferrentino: I actually wound up going to dinner with my friend Nadia, who I call my postpartum sponsor — like an AA sponsor, legitimately. I went to dinner with Nadia, and Nadia was like, “How are you feeling?” And I was so excited. I was like, “Girl, I’m good. I’m not depressed! And, you know, this is amazing!” And Nadia starts asking me some questions and she’s like, “OK, but like, you know, are you sleeping? Are you eating? What are the thoughts that are taking up a lot of space in your mind?” And I was like, “Oh, girl, I’m good. You know, I’m not really sleeping. I eat a little bit here and there. And I’ve planned everyone’s funerals, but I’m not depressed!” And she was like, “Oh my God, honey.” Like, she recognized it before I did. And I almost was mad at her when she was like, “You’re not OK.” And I was like, “Oh, I’m fine.” Because it didn’t … it was bad, but it didn’t feel the same. And as long as it didn’t feel the same, that mattered to me. I was OK then.
It didn’t feel the same the second time, but it was there. This time, Danielle was told she had postpartum anxiety.
Danielle Ferrentino: I remember going, “No, I don’t. [laughs] No, I don’t.” And then she was like, “But you do.” And I just sobbed. And she was like, “Why are you crying?” And I’m like, “Because I’ve been here before! This isn’t the same thing. I’ve done- I’ve done this. This doesn’t feel like that.” And she was like, “And still, you’re sick.” I didn’t know that that level of anxiety could exist. I was moving through that like it was normal. The sick mind is a liar, and it will make you feel like what you’re thinking is normal. But it’s not fucking normal. Like, my kids were fine and healthy, and I’m planning their funerals. I’m planning my own funeral. Like, there are things that linger. I always sit facing an exit. I always have an escape plan. I don’t go to parties I can’t leave, so you won’t catch me on a cruise ever again. You won’t catch me on a boat party. No, I got to be able to leave. And part of that stems from my awful experiences with postpartum depression and postpartum anxiety. Because I was so trapped. I was so caged. And I couldn’t escape it. And so now, like, you can’t put me- nope, don’t do it, because, you know, I get like a wild animal. I gotta get out of there. It’s like primal.
Postpartum anxiety aside, life with Della was great.
Danielle Ferrentino: We slept through the night, which was mind blowing to me, right? Because in the beginning, we slept through the night maybe a week or two in, and I was like, what is happening? She definitely refused to do anything but breastfeed, though. Like, she was a breastfed baby. And I didn’t understand. Even when I tried to wean her, I was like, what the hell? She refused to wean. When they tell you you’re supposed to, like, start doing solids and start giving things, I tried. And it was not happening. You would try, and she would just like and not like, baby spilling. Like, she was like, “No, this is not for me.” And I tried sweet things, and sour things and, you know, different types of textures, all different types of things. And she would not eat. So finally I went back to the doctor and I’m like, “Hey, you know, she’s not trying to eat.” And the doctor was like, “It’s not a big deal right now. Like, she’s getting everything she needs from you. If she got hungry or she needed something else, she, you know, she would, you would know.” And so I was like, OK. So then that was her not wanting to eat.
Breastfeeding is an amazing and wonderful thing for those of us who can and choose to do it for our babies. AND I think any person who has done it will understand why Danielle wanted some freedom from nursing full-time.
Danielle Ferrentino: I was like, “Can we please vacate this premises?” And this premises being my body. Like, ASAP. I was ready. I was so ready. Because we were like a year in. And I was like, “It’s time to wean. This is what I do. I wean my babies at a year. This is great.” And I started to wean her. And she got mean. We called her MAB — Mean Ass Baby! She was mean as hell. She wouldn’t eat anything else. Like, I know some parents are like, “Oh, it’s so beautiful.” It is. But when you don’t want to do it anymore, you’re stuck. I got stuck breastfeeding her for like, six more months, because she refused to eat food.
Nora McInerny: When do you start to realize that the doctor could be wrong, and that something just isn’t right?
Danielle Ferrentino: She had gotten so lethargic, and she wasn’t really moving a lot. And, you know, at the time they were both little, so one was 2, another one was like, 5. And a 2- and a 5-year-old are going to make noise regardless. Like, no matter what’s happening, there’s going to be some noise. And I was doing dishes. And I remember one was watching some sort of awesome cartoon that was definitely not “Caillou.” And all of a sudden, everything goes silent. But I’m still doing the dishes. It’s way too quiet. I’ve gotten through the whole dishes. I’ve started to wash the counter. Where the hell are my kids? Something, something is up. And I remember I went out to the living room, and Della was sitting on the couch, and she was staring straight at the wall. And her foot was like, raised a little bit, almost like if you needed help tying your shoe. So imagine her sitting on the couch. You need help tying your shoes, so you lift up your foot a little bit like, “Hey, mom, can you help me tie my shoe?” But it was just sitting there like that. And I looked at her and I was like, “Baby? Baby? Della? Della?” And she was stoic. She was a statue. So I went over to her, and I’m like, “Delly!” And I’m, like, trying to, like, get her attention. And she looks like a zombie. And I was like, “OK, something is definitely wrong.” I called 911. I didn’t even know what to tell them. Like, what do you say? “My baby’s a statue?” Like, I just knew something. I knew something was up.
Della stays at the hospital for about a week undergoing all sorts of tests. Her little toddler body is not absorbing any of the nutrients it consumes. And because babies are sooo active — literally, watch them some time; they NEVER STOP MOVING — she’s using up more energy than she has available to spend.
Her doctors don’t know what’s going on, but they give her some nutrients intravenously, stabilize her, and send her home. And this starts an exhausting cycle of hospital visits.
Danielle Ferrentino: This happened over and over and over again, where we would go home, and sure enough, about a week later we were right back in the emergency room. Wound up being in the hospital two weeks at a time, each time usually to get her stabilized.
Della is not growing. She’s walking and doing things that lots of toddlers do, but she’s tiny, and I mean tiny. Danielle and I are friends, so I’m seeing her post photos of her daughter in real time — and I’m seeing how frail and small she looks.
Danielle Ferrentino: And people were, like, looking at me, like, “Is something wrong?” And I was like, “Yes, something’s wrong. I don’t know what’s wrong. They don’t even know what’s wrong, but it’s wrong.” Right? So then we finally go to the doctor, and at this point she had not gained an ounce, had not grew an inch in about a year. And I asked them, I said, “Is my baby a little person?” And they, like, kind of laughed at me. And I was like, “Look, if y’all can’t figure this out, don’t laugh at my guesses.” So at this point, we’re about two, three years in. And they diagnose her with chronic toddler diarrhea. If that is not the most lazy fucking diagnosis. What?! Literally looked me dead in my face and said, “She has chronic toddler diarrhea.” The fuck. What? What is that? I said to them, “This is a lazy ass diagnosis. Are you sure?” This is what they say: “Yeah. Uh huh. She’s got a milk intolerance, and she has chronic toddler diarrhea.” I know poop stinks, Nora. Like, I’m fully aware. OK? Her shit smelled like death. Like, it smelled like death. It smelled like something was dying inside of her. There was something so wrong with it that I knew something was really wrong inside of her. I knew it. And you couldn’t tell me something wasn’t, because I could feel it in every part of my body. I was like, something is wrong. I’m seeing her wither away. And if this is chronic toddler diarrhea, it’s killing her. She didn’t speak for a really long time. It was like one day she went to sleep and then the next day she woke up and she was speaking in full sentences. She went from saying absolutely nothing to having full-blown sentences. And the reason why she couldn’t speak is not because she couldn’t. She didn’t have the energy. When I tell you she was dying … you survive off of food, and she was not eating. Mealtimes for us brought us to tears all the time. Like, you’re begging your baby to eat. You’re begging your baby to eat. Because you know that your baby is in failure to thrive. You know that your baby is not growing. You know what happens if your baby doesn’t eat. And you’re in such a weird position, right? Because you don’t have a real diagnosis yet. You know something is wrong, but you can’t prove it to people who are supposed to be the ones telling you what’s wrong. And you can’t get your baby to eat. You can’t. And the reason why they thought she wasn’t eating is because she had chronic toddler diarrhea. And I kept asking, “How is that possible when she’s not even eating? What is this coming out of her? Because I can tell you that what is coming out of her doesn’t make sense, because she’s not even consuming that much.” I literally do not know how most parents survive dinnertime, because it’s just a whole disaster, but I really don’t know how my family did.
Danielle, Marley, and Della move back to the East Coast. And Danielle — now a single, working mom with a whole lot on her shoulders — starts building a team of doctors to figure out what’s happening with Della … starting with an allergist.
Danielle Ferrentino: We talked about the food, and we talked about the poor weight gain, pretty much living in failure to thrive. We talked about the multiple hospital stays, just all these different things. And she goes, “This sounds like eosinophilic esophagitis.”
That diagnosis that Danielle just mentioned is commonly referred to as just “EoE,” for obvious reasons. And even though Danielle explained to us what it is, and even though there’s someone on this team who also has EoE, it’s still hard for me to wrap my head around, so I’m gonna let the Mayo Clinic explain:
“EOE is a chronic immune system disease in which a type of white blood cell (the eosinophil) builds up in the lining of the tube that connects your mouth to your stomach (your esophagus). This buildup, which is a reaction to foods, allergens or acid reflux, can inflame or injure the esophageal tissue.”
So, in children, symptoms of EoE include difficulty eating, abdominal pain, difficulty swallowing, and … failure to thrive.
Della undergoes endoscopies and biopsies on her esophagus, her stomach, both intestines and her colon.
Danielle Ferrentino: She is so inflamed on the inside — from her throat, her colon, her esophagus, her intestines. It’s like they’ve been eating themselves alive. She is in so much pain, so of course she doesn’t want to eat. And so I am overwhelmed. My baby has been in pain for so long. She is literally withering away. Like, she is not a real person anymore. She is … it was … it was scary. It was really scary. And when the scopes came back, Dr. Schreiber said, “She definitely has EOE, and I also think this is just the beginning.” And it was.
We’ll be right back.
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So, eosinophils are allergy markers. The number of eosinophils you have in your body help tell you how allergic you are to the things you encounter in the world. An average person might have a few hundred eosinophils in their body if they have seasonal allergies or are allergic to, say, cats.
That’s not the case for people with EoE.
Danielle Ferrentino: Della has 4,000 on a good day. Four thousand allergy markers. Which means her body’s allergic to everything, because it’s got too many markers. So even the stuff she’s not allergic to, it’s signaling to her body that she is allergic. So food really, really, impacts the eosinophils. So as she was trying to eat, her body was like, “What the hell is this? I’m allergic to everything.”
This requires a little explanation. A person with EoE could get tested for, let’s say, a dairy allergy, and the test could come back negative. The person is NOT technically allergic to dairy. But when they eat dairy, allllllll of those eosinophils in the body see the dairy and attack it. And those attacks build up inflammation.
So, the thousands of eosinophils in Della’s body were attacking everything she ate. And because of the way that EoE works, Della could have a bad response to a certain food one day and then NOT have the same response the next week. And vice versa. It’s constantly evolving.
Danielle Ferrentino: We had to put her on a really strict diet, which was hard anyway, because she wasn’t eating. So now we know the problem, and part of the problem is we have to restrict a lot of food. What? What? How? You want me to restrict food when she can barely eat? We had to take out all different types of things. We found out that she had an egg allergy, and we had to take out gluten, and then we had to take out nuts. We’re always safe with protein and fruit, but protein and fruit are going to make her the tiniest little person on the planet. So, like, it’s not helping us. And the stuff that, like, you know, will fatten her up a little bit is stuff that she can’t have. We’re just in this cycle of failure to thrive. You know how some people are like, “Ohhh, I remember the first food you ate,” or, “I remember this,” or, “You used to really love this.” I don’t remember that stuff, because we have such a different relationship with food in this house.
Doctors eventually discover that Della has not just EoE, but also EoG — eosinophilic gastroenteritis. Which basically means she has those same large numbers of allergy markers in her stomach and GI tract. She’s also diagnosed with a third autoimmune disorder called Lichen sclerosus, which affects Della’s skin. Ooof.
Through it all, Della somehow manages to be the most positive, the most upbeat child you’ll ever meet. She has her own Instagram account that is obviously managed by her mother called The Della Diaries. And she is mine, and will be your, favorite motivational speaker.
Della: Hi everyone, I hope we’re having a happy morning. So, how are we feeling today? Good, or sad? If you’re sad, I wouldn’t love that, but I can do anything to help. Just tell me whatcha need if you’re sad, and I will help you. So I hope everybody’s having the best days, and I have a joke for you: What did the heel say to the shoe? “Oh no! There’s a big hill!” I hope you’re having the best school days and weekend days. Bye!
Della: Hi, my name is Della. I’m going to be telling everyone who’s going back to school how they should not be scared or not be mean and take care of their school.
Della: “Who’s gonna rock your day? You! Who’s gonna rock your day? You! Who’s gonna rock your day? You better say your name, cuz you’re gonna rock your day.”
Della: Hi everyone, it’s a happy Hanukkah day, and it’s also almost Christmas. I hope everyone’s having a good day, but remember that you still have to wear your mask, and you still have to be safe. But you can still be in a happy mood. Like, it’s really chilly outside, some people’s places are snowing, think of that happiness. But at my place it isn’t snowing. But I’m still having a good time, because I’m with my family.
For a while, with help from a restricted diet, Della’s illnesses are in remission.
Danielle Ferrentino: Remission for Della looks like .. no incidents, really. We’re usually still in failure to thrive, but we’re eating. We’re not losing weight. Now, we might not be gaining weight, but we’re definitely not losing weight. Right? And so we were in remission for maybe almost even a year. And I was like, “Could this be it?” And then her weight started to drop. Her skin started to flare. Her skin was so scaly. She just looked sick. You could tell the energy- she was trying to give you her energy. She’s trying to give you love. And she just couldn’t do it. She was exhausted. So she came out of remission and we went back to living at Children’s Hospital, literally. And I taught from the hospital. I was taking five classes at Johns Hopkins. And then finally they decided because failure to thrive was prevalent, that she needed to get a feeding tube.
With the feeding tube, Della will get the nutrients she needs without having to actually eat and digest the foods that carry them and that also cause inflammation.
But before Danielle can take her daughter home with the new feeding tube setup, she has to learn how to put the tube in herself — it’s called “dropping the tube.” Because when you’re the parent of a chronically ill child, you are no longer just their parent. You’re also their at-home nurse. You’re their caretaker, but without any of the professional medical education.
Danielle and her new, amazing partner, Jeff, are not thrilled at the idea of turning Della into a real life test dummy. She’s been through enough pain.
Danielle Ferrentino: And I said, “So, just to be clear, we can’t leave until we drop the tube.” And they were like, “Yes, that is what has to happen.” And I said, “Just gotta drop a tube and then we can go home.” And they said yes. And Jeff goes, “Can she drop the tube on me?” And the look on their faces … I realized nobody had ever asked that. So this man, who is not her biological father, but is the man who absolutely raised her and loves her and cried every time we had to poke and prod her while we were in the hospital, said, “Please, let her drop the tube on me. If you just need to see that we know how to drop the tube, let her do it on me.” And they looked at each other incredulous, like, they didn’t even know what to do, and they said, “Well, we’ve never had anyone say that before, but I guess, yeah, just just do it.” And so I dropped the tube on Jeff. It was excruciating pain for him. And they let us go home.
Nora McInerny: And he’s an adult man, and it was horrible for him.
Danielle Ferrentino: Oh, he cried. It was horrible for him. He, I mean, he was pissed. “This is what she feels like when we do it? Like, this is awful,” you know? And then we were really aware of it. We were aware of all the pain. We were aware of how awful it was. So we started off with the feeding tube that went through her nose, down her throat and into her stomach. I think the G tube, I think that was like a test to see could she gain weight? And sure enough, when we had the tube, she was, she was gaining weight. She was getting half of her nutrients from food, and then she was getting the other half by being tube fed overnight. And then she sneezed it out, and we were able to get it back in one time. And then she fought us with superhuman strength. And I cried. Jeff cried. She cried. And we were like, “Never again. Never again! We’re not doing this.” And so we made the decision. You know, we consulted a whole bunch of different people, her team, and we knew we needed something long-term.
And that long-term solution turns out to be a gastric tube implanted in Della’s stomach, leading to a port on the outside of her belly. Hers is the MIC KEY brand. They pronounce it Mickey.
Danielle Ferrentino: And so she feeds at night through the MIC-KEY Button on her stomach. Della can do her own medical stuff. She knows her stuff. She’s amazing. You know, she’ll be like, “You don’t have to come in here tonight, Mom, I got it.” I’m just like, that’s so sweet. And also, it’s just so not fair. Right? It’s so not fair that she has to know these things, and that she spent three Christmases in the hospital. Right? And that she spent the majority of her life in failure to thrive. It’s just a lot for a little person.
It’s a lot for Della. And it’s also a lot for Danielle, a mom of two who is working as a teacher during a pandemic. Who is a Black woman raising Black kids in America. Who already deals with anxiety and depression and now lives in fear that her child could just drop dead from something as simple as a kiss on the cheek from a relative who just ate something that Della’s body doesn’t like.
Danielle Ferrentino: We have had moments where we left somewhere, we’re sitting in the car, we’re on our way home. And God bless the nurse, Claire, was with us one time, and she literally said, “Take a left. We have to go to the hospital.” It was that quick. We didn’t even know. Before there was Jeff, and after my first husband, when it was just me and Della and Marley, Nora, I had to shop at four different grocery stores with two kids, and it took four hours. It was intentional because everything had to be so safe. People have no idea. They have no idea. I remember the first time I found bread. I was by myself in the grocery store, and I saw bread, and it said gluten-free. And I didn’t want to get my hopes up, because I’ve seen tons of gluten-free bread. But what happens is, is I go down the ingredient list and it’s like, everything-free. And then all of a sudden, dammit, there’s eggs. Right? I picked up the bread. And I go down the list. And I forget that I’m in a grocery store. You would think that homeboy showed up with a Publisher’s Clearinghouse big ass check. Like, that’s how I reacted in the store.
It’s excruciating to watch your kids suffer. To watch them hurt and be unable to do anything about it. Della has been in remission for a while now, thanks to the MIC-KEY button giving her nutrients every night. She’s not gaining a bunch of weight, but she isn’t losing any, either.
But that doesn’t make her day-to-day life any less complicated … and it scares Danielle to look too far ahead into the future.
Danielle Ferrentino: She has the best attitude ever. She’s so positive. But also, this is a new part of whatever the hell this is, this journey. Because before, she wasn’t exposed to so many things, so that was just her normal. But now I’m getting questions like, you know, “Why did God make me this way?” Or like, “Why, why can’t I eat everything that other people eat?” Or, you know, “Am I always going to be this way? Do I get to get rid of my tubey, Mom?” You know? I get all these questions, and I don’t have the answers, and now she has all the questions. This has been quite a long remission. And we are praying that, you know, she won’t have to have tubey for forever. But what I will tell you that she’ll probably have forever? Motherfucking medical bills. [Yeah.] She’s 6, and she is swimming in over one hundred thousand dollars in medical debt. Oh, my God, keeping this kid alive is so expensive, and I love her so much, and also … I could have put her through college at least four times. And it’s hard. People are like, “Do you have health insurance?” I do. But you know what health insurance is really good for? Healthy people. Health insurance is amazing for healthy people. And you can have the best of insurance, but you’re still coming off two thousand dollars a pop, four thousand dollars a pop.
And there’s another aspect of Della’s illness that we haven’t even touched upon yet but that is a major player in all of this: Marley. Della’s older sibling.
Danielle Ferrentino: Marley has been traumatized. Their best friend. Their sister, right? Is … they’ve been, they were a kid too! Marley’s been a kid the whole time, right? And Marley’s had to be pushed aside sometimes. Marley’s had to exist with a sick sister their entire life. It has deeply impacted the entire family, you know? And … and time. Having a sick child, the amount of time, energy, everything that goes into it — for me, for Jeff, for Marley, for Della, for all of us — you know, it’s just … and it’s also something I’ve never navigated, right? Like I’m … just, like parenting, just like everything, like … I’m winging this shit.”
We’ll be back.
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You’ve heard from Danielle, and you’ve heard a little bit from Della. But we wanted to get her insights on what it’s like to be her, to be a kid living with chronic illnesses.
And who better to interview her than her mom, the former radio professional turned elementary school teacher slash podcast host?
Danielle: OK. Check, check, check. Hello. Hi.
Della: Hi.
Danielle: OK, are you ready?
Della: Mmmhmmm.
Danielle: OK, so we’re just going to answer a few questions for my friend Nora. Do you remember what I told you her podcast was called?
Della: Um…
Danielle: Terrible…
Della: Terrible…
Danielle: “Terrible, Thanks for Asking.”
Della: “Terrible, Thanks for Asking.”
Danielle: And she talks to people who have had some who’ve gone through some pretty big things. And do you know why she might want to talk to you?
Della: Because I’ve gone through some pretty big things.
Danielle: But what is the biggest thing that you think makes up the bad stuff.
Della: My tubey!
Danielle: Yeah, that tubey, right? So what are your not-safe foods?
Della: My not-safe foods is dairy…
Danielle: Mm hmm.
Della: And milk.
Danielle: Well, that’s dairy. But yes.
Della: And egg…
Danielle: And egg.
Della: [00:01:04] And egg whites… [00:01:05][0.3]
Danielle: [00:01:06] Uh huh. [00:01:06][0.0]
Della: [00:01:06] And… [00:01:06][0.0]
Danielle: [00:01:10] Sesame. [00:01:10][0.0]
Della: [00:01:11] Sesame, but I’m not allergic to Sesame Street. [00:01:15][3.6]
Danielle: [Laughs.] No, you are not allergic to Sesame Street, but you are definitely allergic to sesame. So you’re forgetting something. You gotta know these. What is it?
Della: I’m thinking, don’t tell me!
Danielle: Nuts!
Della: [00:01:37] Nuts! [00:01:37][0.0]
Danielle: Yes, you forgot nuts. Yeah. So you’re allergic to a lot of things. What are your favorite safe foods?
Della: Hmm. I like rice. [Yes, you do.] I love potato chips. OK. I like Pringles. I like green beans. I like french fries. I like chicken nuggets.
Danielle: What is the best part about being Della?
Della: That I’m Della.
Danielle: [Laughs.] What does that mean? I love it.
Della: It means that God chose me to be Della.
Danielle: I know that’s right, yes! And even when you have, like, tough times, like with your tubey, like, do you still love that you get to be Della?
Della: And sometimes, I cry if I have tough times being Della.
Danielle: Yeah, I can understand that. But you like being Della?
Della: Mm hmm.
Danielle: Oh, that makes me so happy, baby. I’m really happy about that. What’s the hardest part about being Della?
Della: Not eating a bunch of food. Because I have to have a tubey. And also, I’m allergic.
Danielle: What does a Della Day look like?
Della: A Della Day looks like … I’ll tell you two types. So, Sundays. On Sundays, I … sometimes I clean, sometimes I do some homework. Sometimes I watch stuff and play video games, and sometimes I play. And school days, I do homework at school. I eat lunch. I have recess. I do my resource, and then I head home and I take a nap. And then after I take a nap, I play a game with Marley.
Danielle: Oh, cool, Marley’s your sibling. I love it. OK. When you’re feeling sick, what helps you feel better?
Della: When I’m feeling sick, something that helps me feel better is hanging out with Mommy.
Danielle: I knew you were going to say that. Why?
Della: I don’t know. Just you make me entertaining and you help me and you’re so happy and you’re so smiley. Your spirit makes me feel a lot better.
Danielle: Oh, thank you so much. Your spirit makes me feel a lot better. So they call your tubey a MIC-KEY button. Tell us a little bit about your tubey. Like, what’s the point in your tubey?
Della: Well, the point of my tubey is that I don’t eat.
Danielle: Yeah.
Della: But I’m getting, but I’m eating a lot more, so I’m getting taller and taller and taller. So now I, maybe we’re considering taking it out.
Danielle: Oh, I hope so, baby. [Me too.] Tell us how it works.
Della: So it works. So there’s this formula.
Danielle: Mm-Hmm.
Della: Then there’s this long tubey snake. [Yep.] And then that snake has this little button, and then it connects to my tubey, since my tube opens and it shuts.
Danielle: [00:05:52] And where is your tubey? [00:05:53][0.4]
Della: [00:05:53] It’s in my stomach. [00:05:54][0.5]
Danielle: [00:05:54] OK, does it hurt? [Uh uh.] Did it ever hurt? [Mmmhmm.] It did. When? [00:05:58][4.0]
Della: When there was like these … Mommy, do you remember if it was pokers like these little, like, stitch thingies I think? [00:06:07][7.2]
Danielle: Oh yeah, when you first got it in it hurt?
Della: [00:06:11] Yeah, because there was like these blue pointy things in my body,. [00:06:14][3.8]
Danielle: [00:06:15] Stitches. [00:06:15][0.0]
Della: [00:06:16] And on my um, tubey. [00:06:17][1.2]
Danielle: [00:06:18] Yeah, that did not feel good, huh? [Uh uh.] Yeah, [00:06:21][2.9]
Della: [00:06:21] I was in the hospital. [00:06:22][0.4]
Danielle: Yeah. How many times- do you know how many times you’ve been in the hospital?
Della: When I was a baby, most of the time.
Danielle: Yeah. You spent a lot of time in the hospital.
Della: And at least the hospital with Dr. Brown there, I mean, they have the best french fries. They have smiley faces!
Danielle: They do have smiley face French fries. Do you like your team, your doctor team? [Yes.] If we were to say how long have you been sick, would you know the answer to that? [Forever!] So how long have you been healing? [Forever!] What’s important about our words?
Della: That we don’t manifest bad things. If you manifest it, then it might happen. And if it happens, it will make you very, very sick.
Danielle: So instead of saying, “Delly’s a sick baby,” we say, “Delly is a healing kid, right?”
Della: [00:05:13] Uh-Huh. [00:05:13][0.0]
Danielle: So you are healing. And yeah, I just think that people are pretty amazed by how much you’ve been through and how you keep it very positive. Where do you get that positive attitude from?
Della: You!
Danielle: Come on now.
Della: And you from Claire Bear. And then Claire Bear from Claire Bear’s parents. And Claire Bear’s parents from their parents.
Danielle: Oh, everything comes from that. That’s really sweet. Well, I’m glad that you’re healing, and we will have to keep Nora updated on this tubey situation, because you are finally growing, girl. Does it feel cool to finally feel like you’re growing, and like—
Della: [00:07:55] I don’t feel like I’m growing. I feel like I’m still short. [00:07:57][2.5]
Danielle: Well, well, you are, but you’re definitely not what you used to be. And for other people who are going through tough times and, like, maybe other kids who have a lot going on and have to spend a lot of time in the hospital, what would you say to them?
Della: I would say get well soon. And I’d give them a bunch of balloons.
Danielle: You would give them balloons.
Della: And I would say, “I hope you feel good better, and soon you’ll be OK. And maybe when you’ll be OK, we can play a game. And we still can, even if you aren’t. But that’s not what I’m manifesting.
Danielle: Oh, you manifesting positive outcomes. I know that’s right.
Della: Can I sing the song?
Danielle: [ Yeah.
Danielle: “Manifest positive outcomes, only, only.”
Danielle: Oooh, give it to me one more time.
Della: “Manifest positive outcomes, only, only.”
Okay, I’ve done my fair share of criticizing gurus and influencers who preach manifestation and tell their followers to “just think positive and everything will be okay!” But Della might have just changed my mind. And that song is catchy as heck. And Jeyca is going to figure out how to turn it into a ringtone, okay? For all of you. For me.
Nora McInerny: What have you learned from being Della’s mom?
Danielle Ferrentino: Oh, my God. I’ve learned that there is so much power in one, trusting your intuition, right? I’ve really learned that. Because as a parent, you have to remember that you are the expert on your child — not a doctor. And that’s true. Like, you are the expert on your child. Nobody spends more time with your child than you. And as a result, I knew … I knew so many different things. And I, I was able to piece some of this together, you know? I, I pushed. I also have learned that love, like legitimately, love, right? Like in the worst moments, in the scariest moments, in the saddest moments, when I think back through the hospital stays, when I think back through, you know, us wrestling her when she had, like, mutant strength, trying to get that tubey back in her nose, when I think about the night that I was up in the hospital bed while she was sleeping next to me, and I was crying while she was sleeping … I think the biggest thing that I’ve learned is that that all came from a place of love. Like, her fight, my fight, Jeff’s fight, Marley’s fight, to protect her, to save her, to heal her … love was bigger than all of it. Love was bigger than my fear for her survival. Love was bigger than her diseases. Love was bigger than all of it. When I think about crying in her hospital bed, I don’t think, “Oh, that was sad.”I think, “Damn, I love her so much. And that’s why I was crying.” When I think about Jeff putting the tube in his nose, I don’t think he was crazy. I think, “This man loves my baby so much, his baby, so much.” You know, when I think about Marley’s level of empathy, I don’t think, like, damn, it’s really sad they know this level of empathy. I think, “It’s tough to be that little and to know this level of empathy. And also they know this level of empathy because of how much they love their sister.” Right? And so the greatest gift in all of it is the love. Like, love has been bigger than all of it, especially bigger than the fear. Love has been bigger than all of it, and that has been … it’s been the saving grace in the entire situation.
This is Nora McInerny, and this has been “Terrible, Thanks for Asking.” I have some good, big news from Della. After we produced this episode, she got her tubey removed! She is in a big remission, and she’s doing great.
“Terrible, Thanks for Asking” is a production of APM Studios at American Public Media. Our production team is Marcel Malekebu, it’s Jeyca Maldonado-Medina, it’s Jordan Turgeon, and it’s Megan Palmer. The executives in charge of this show are Lily Kim, Alex Shaffert and Joanne Griffith. Our executive producer is Beth Pearlman. Our theme music is by the lovely, the wonderful Geoffrey Lamar Wilson. Go to geoffreylamarwilson.com, download his music, buy his beautiful, beautiful music, go see him in person if he’s ever touring. Hopefully someday we will tour again and we will bring Geoffrey with us because he is the best. Anyways. I did not record this in our closet, I recorded it in an AirBnb closet, because the TTFA galls all came down to Phoenix, so we could hang out and work together for the first time in two years. It has been lovely. Okay, that’s it!