Transcript

Jessica Fein: [00:00:00] Welcome back to the show. My guest today is Corey Corrigan. Corey and her husband Colin are parents to Harper, who's three years old. Harper was born at just 31 weeks, weighing two pounds, two ounces. They discovered after her birth that she had fluid around her heart, and so she was flown to Children's Hospital of Philadelphia, which is referred to as CHOP.

Well, the fluid around her heart turned out to be nothing but while she was being tested, something else altogether was discovered. Harper has a brain malformation called Lissencephaly, which literally means smooth brain caused by a rare genetic syndrome. Miller-Dieker, Corey, Colin, and Harper didn't leave CHOP for 11 months.

And when they did return home, Harper had a trach, was vent dependent and had a G-tube. There's one other thing I need to tell you. I've never met Corey before and we had never spoken before this interview, but before we spoke, Corey sent me some blogs she'd written. Let's just say they hit me pretty hard. As I've spoken about quite a [00:01:00] bit on the show, my daughter Dalia also had a trach, was ventilator dependent, and had a G-tube, which is a permanent feeding tube in her belly. So when Corey started talking, I completely forgot to introduce her or to welcome her. It might sound as though you're joining us in the middle of a conversation, and that's because it felt like I was picking up with a long lost friend.

So without further ado and without a formal welcome, here's Corey. 

Let's just kick off by hearing about your beautiful daughter. Tell us about Harper. 

Corey Corrigan: Harper was a big surprise. She's three years old now, which is crazy. I had Harper nine weeks early. My water broke as I was getting into bed one night. Complete surprise. There had been a few things here or there in the pregnancy, but nothing like everything came back. Oh, it's fine. Oh, it might be… Oh, it's fine. That's over and over again. So my water broke. Harper came at 31 weeks. And initially she actually did well for about 24 hours. She breathed on her own.

She cried [00:02:00] pretty good Apgar scores and we were like, okay, we're gonna be okay. And that was the only 24 hours in her life that things felt like they were gonna be okay. She was only two pounds, 12 ounces, so she was really tiny. 24 hours later, I’m recovering from a C-section. And we get the news that she's being intubated all of a sudden.

And the doctor who we will forever not really like tried to intubate her, I think eight times and couldn't do it, and my husband and I are first time. We're just watching him try to intubate this little tiny being and he couldn't do it, and he was getting really frustrated. Finally, he managed to do it and they told us You need to get choppered immediately to CHOP.

Even though this is a good nicu, she has a lot of fluid around her heart. You have to go right now. So they discharged me from the hospital 24 hours after having my C-section. Literally gave me my shots as I'm walking out the door, they're like walking with me in the hallway, reading me like, don't do this, don't do this.

Here's this, here's this, here's how you pump. And they let me [00:03:00] go. My husband and I drove down to CHP{. She was choppered, got there before us. 

Jessica Fein: Back up for one minute. You have given birth 24 hours earlier. You've just watched them fail over and over again at trying to intubate and I can't even imagine because when they were trying to put the feeding tube in Dalia before she had her G-tube, and they were failing at that, it was so excruciating to watch.

And that's not intubation. So I can't even imagine that. And then, You couldn't go on the chopper with her? 

Corey Corrigan: No, they said the weight was too much. We weren't allowed to go because she was so tiny. She needed an extra special gurney to go with her, like basically a little incubator. And they said the weight of that was so much that they couldn't take anybody with them, so we had to just send her goodbye.

We weren't allowed to kiss her or anything cuz she was in the critical condition. And so we decided to get in the car. I didn't have shoes. I remember because we had run out of the house. My water was just breaking every, like it [00:04:00] was not a trickle. We're running through the parking lot, me and my little hospital slippers.

Jessica Fein: God, please tell me you weren't running in the hospital robe. 

Corey Corrigan: No, no, no, I wasn't. But I was in pajamas that were obviously disgusting at that point because my water had broken. So hilarious to think about now. So then we got in the car, drove down 95, and of course it was like a day that 95 closed. I'm trying to pump in the car for the first time ever with a hand pump that I don't know how to use. Both my husband and I took turns having like screaming fits in the car. And then we got there and they said, it's too dangerous for us to do surgery, and her heart function is fine, so we're just gonna sit and wait and see what happens. And so we didn't leave CHP{ for 11 months after that.

We never found out why she had fluid around her heart. It just went away and never came back and was never a problem. So it was almost like a blessing. Like she got that fluid. We never would've been at CHP{ for her to be [00:05:00] rescued later when she got very sick. Who knows in an effort to figure out why she had fluid around her lung, they did all these tests because they weren't sure, like, why does she have this?

Does she have some sort of condition that we need to treat? And so they did an ultrasound of her head and all various body parts not expecting really to find anything. Just kind of doing it just because. And so in the middle of the night, the week after she was born or so, I came in to pump. I pumped in front of her incubator cuz they said it was helpful to watch the baby.

So I'm like, okay, well you know, I'll pump there. And this kind nurse was on and I asked, oh, did the ultrasound stuff come back yet? Not thinking it was gonna be anything. And she said, well, I think you should wait until rounds tomorrow. And I am not a very patient person, and of course anxiety is just sky high.

And I said, we just saw I was gonna come back, whatever. And I, I didn't try to fight her about it, and I guess she took pity on me. I actually for a long time really [00:06:00] disliked this woman because of what she did, even though it was a kind thing, because she told me just totally nonchalantly that my daughter had a catastrophic birth defect, brain abnormality, and she didn't even know what it meant because it's so rare.

So she just pulled up the ultrasound stuff and she's kind of listed out the clinical presentation of her brain and said, I'm not sure what that means, but you can ask at rounds tomorrow. And I was new to the hospital experience, didn't realize that I could say, no, I wanna talk to somebody right now. It wouldn't have been the same team, but it would've been a doctor and that could have explained it or talked to the social worker or talked to anybody.

But I was new to that, so I went back to the room. She was in such critical condition. We were allowed to stay at the hospital in the rooms they had on the floor. Colin's asleep and I lay down next to him and of course I pull out Google, I look it up, and it says that it's catastrophic, that she'll live almost 10 years, that she will walk, talk, eat, catastrophic [00:07:00] seizures.

Really just kind of worst case scenario of things you could think of. I'll never forget this, and I actually use it to motivate myself when again, arguments with my husband or things seem hard because I decided, you know what? I'm gonna give him eight hours of not knowing that this is the future for Harper.

When we talk about, I don't know how you do that, I actually think back to this and say to myself, I don't know how you did that. 

Jessica Fein: I don't either. I don't know how you sat with it, and I think it's the most selfless act what you did and what an act of love and giving him that last night of not knowing and holding that all to yourself is just astounding.

Corey Corrigan: Yeah. I mean, honestly, I'm sort of astounded at it. I think a lot of shock went into that. I know it from how I reacted later and past experiences that I'll disassociate. And not feel things. And I think like I felt a lot of things in that moment, but I think at a certain point of reading that my brain went like, Nope, this is too horrible.

This is too much. And [00:08:00] kind of tamped down a lot of that, which I then had to go through later in therapy. But I think that maybe that helped me do that. 

Jessica Fein: I can totally relate to that. I find that I disassociated sometimes too. And it's interesting because I remember consulting Dr. Google when we got our diagnosis and it said MERFF syndrome can present, you know, and then there was this list, you start off at the top and you're like, that's bad.

And then the next thing you're like, oh my God. And then, you know, it gets all the way down through the, like blindness to, you know, starts with short stature. And I'm like, okay. She'll be short. That's okay. You know? But it starts going down and until ultimately that it's gonna be a shortened life, that this is a life-threatening illness.

But I remember when I was reading it, I was like picking and choosing as though it was gonna be up to me like a bargaining, like we'll take the shortness and, okay, hearing loss, that one will take, but not the blindness. Did you do that? 

Corey Corrigan: Yeah, I did a lot of that cuz there's, you know, a cavalcade of things that could be associated with her.

There's a range of severity as with many conditions and we didn't know what the range would be. And so I [00:09:00] definitely was like, oh, well, you know, we could deal with that, but that's, you know, too much. I couldn't handle that. Like I was absolutely terrified of seizures, absolutely terrified of them being in our life.

We got really lucky actually, with how severe she actually is that she didn't have seizures till she was almost six months. A lot of kids from birth are very, very early on, and once they came, it was almost actually a little bit freeing because it was one of the last things that I was absolutely terrified about in terms of her list, besides death.

And that was actually the catalyst for me being strong enough to join like support groups about Lissencephaly or about Miller-Deaker. Cuz I thought before, I don't wanna see this. I don't wanna know. I don't, I don't wanna hear about this.

Jessica Fein: It's almost like you were giving yourself the gift that you had given to your husband.

I can have a little bit more time of not being exposed to that. Just like you were giving him the time not to be exposed. 

Corey Corrigan: Yeah. Whether it was healthy or not, it helped me. [00:10:00] I'm here, I got through it. Yeah. And I think eventually, you know, joining those support groups was super helpful. That has been life changing in some ways, but I definitely wasn't ready to do it until I was ready, until I had hit a point where I felt like I'm strong enough that I can hear all of these horrible things that might happen without falling apart.

Jessica Fein: You said that there was a loneliness even with others who were going through a similar thing, and I think that's so interesting, right? Because it's obviously isolating from the friends who have typical kids. Mm-hmm. They have no clue what your life is anymore. But it was interesting to me to read that you said it was also isolating if you're not at the same head space, if you're, you know, three steps ahead or three steps behind from.

The other medical mamas that that can be isolating too.

Corey Corrigan: Yeah, I was surprised about that as well. In some ways, that's even more depressing to me and harder than not feeling like I'm on the same page with typical [00:11:00] families, cuz that makes sense. You sort of expect that, but I find that obviously dealing with a child diagnosis like this is extremely difficult.

Everybody has their own timeframe of going through it. Everybody struggles in different ways, and so I found that when I got on social media, I was kind of on the same page as a lot of people. I was angry, I was afraid. I was really grieving all the time and really in a tough spot. Lissencephaly is not common.

You know Harper's one out of a hundred thousand at most. So the support group for, Lissencephaly is actually super amazing and one of the most kind group of people that is just super lucky. So it's a great group, but it's a very busy group and it's a small group, and so there's not always somebody available.

When I joined Instagram and found other severe epilepsy parents, which I can relate to the most, Besides the trach, which is harder to find. At the time, they were all kind of on the same page as me just [00:12:00] screaming into the void about epilepsy and how there's not enough research, an important thing. But at the base of it, I felt like it dragged me down after a time because I would start to get better in terms of working through things in therapy and like reaching some level of acceptance, not trying to fight that this is my life now.

And not all of them did the same. And so I would reach a new place and feel good, and then I'd spend a few hours on Instagram, and then I would get pulled back into that place. And so that ended up feeling really lonely. It can be really lonely to have somebody that you feel like you should relate to, but they are on a totally different wavelength in terms of their acceptance of the situation and their feelings on it.

Other parents that might not be in the place I am right now, which is accepting and trying to find joy in the little moments in life, they will say that it's toxic positivity and say that that's not good. Which I don't really agree with, but I do think there's a [00:13:00] little bit of a feeling sometimes with other parents of how dare you find joy in this?

Like this is horrific. Like this is not good. If you say that it's joyful, then you kind of erase all of the scary stuff. 

Jessica Fein: Let's just talk about the toxic positivity for a minute, because I know that you have to change what your expectations, what your vision, everything that you have imagined your child's life and your life is going to be, is erased, right?

So you have to change what it is you're striving for. Right. In order to get through, and I know you started to use a measurement of Harper's happiness. With that I imagine is looking for these moments of joy and it's something that was really very core to our approach ultimately as well.

So how do you respond when people say, oh, well that's just toxic positivity. It's survival and it's a way to make something out of this life.

Corey Corrigan: Yeah, I mean, I think I kind of respond with the thing that [00:14:00] helped me to get over that hurdle because honestly, for the first, at least year, I was in a really, really dark place and I spent hours and hours basically having the same conversation over and over again with my dad.

Like, this sucks. I don't wanna do this. I don't like that. This is my life. I can't do this. I can't do this. And he's just saying the same thing over and over. You can do this. I know you can do this. It's just hard. And yes, it sucks one day, and I don't remember who told it to me, whether it's my dad or my husband or my therapist said, what do you want your memory of Harper's life to be with you?

Do you want it to be one of grief and sorrow and anger and sadness because that's what you are doing right now? If you don't change it, then Harper's gonna be defined by that for you forever. And I thought, well, dear God, that is absolutely the last thing that I want. And so that is ultimately what helped me to try to refocus my energy on.

It's not me [00:15:00] defining that things are awesome. It's me finding the joy because. Harper is joy and love and all of those things, and that's what I want her life to be defined as. 

Jessica Fein: Was it your dad who also said, you can do this, you just don't want to? Or did you come up with that? Cuz I loved that. 

Corey Corrigan: I think that it was probably my dad, he's sort of like the philosopher sort of therapist in our family and it's probably was my dad.

Now our whole family uses that. I can do this, I just don't want to.

Jessica Fein: I'm gonna start using it too and I guarantee that people listening to this are gonna start. You should trademark that right away because that needs to be like on the t-shirt or the mug or whatever.

Corey Corrigan: Yeah. I find it helpful cuz it's true.

That's what it really means when you say I can't do something. At least for me it means I just don't want to, I just really, really don't want to. Cuz it's hard and it takes a lot of effort, but if something means enough to you, you'll do it. It just might suck.

Jessica Fein: Right, exactly. Let's go back to the loneliness for a minute, because another thing that you pointed out [00:16:00] is, so you have the parents of the typical kids, we're isolated from them.

Then you've got the parents who can, in theory, relate to your situation, but you're all at different stages, so it's isolating there. But there's another thing that's isolating or can be isolating, at least from time to time, that I think is worth noting, which is feeling isolated from your partner, in your case, from your husband.

Corey Corrigan: Mm-hmm. Yeah, that's also really difficult, especially because my husband and I work well together because we are kind of two pieces that fit well together cuz we're opposites in a lot of ways in how we handle stuff. So, I'm high strung, anxious, not very patient, but very, very driven. So I help things get done when we want them to get done. Whereas my husband sort of pulls me back down to Earth and it is like either you're being unreasonable, like let's have better expectations or more reasonable, or saying maybe take a break and chill out. That's a lucky combination. In a situation like this, if you can communicate well, because for me it was me being like, [00:17:00] No, something's wrong when we're in the hospital.

Like, I want answers now. I want you to work on this now. Whereas Colin normally would take the tact of, well, we'll trust them. We'll wait and see. And it was me sort of saying, no, we won't, because my mom gut says there's something wrong. But that can be isolating when you're grieving because you take totally different approaches to grief.

So for instance, after Colin woke up the morning, after the ultrasound information, I told him the information and I just fell apart. At that point, we actually had to wait two weeks to get confirmation of that diagnosis because she had to get an MRI. She was too small to be in the MRI. She was intubated, so she needed special equipment.

I wish I got a picture of it. She was basically put in this like little rocket ship to be put in the MRI cuz they just had gotten it and nobody knew how to do it. It took them like four hours or something to get her in this thing and we had to sit there. And I remember trying to [00:18:00] play a game with Colin to distract ourselves.

And of course he's playing and I'm just completely a mess and saying like, what if this, what if this, what if this? And he's like, let's just wait. Let's just wait. So his approach during that entire two weeks was, let's just wait. Let's just wait and see what happens. We don't know what'll happen. The doctor said there's a super small chance that this is a false positive on the ultrasound.

Let's wait. Whereas I, the entire time was like, Nope, this is real. This is happening. And I started the grieving. Then every day I'm having breakdowns for two weeks. So when the meeting finally came, I completely disassociated in the meeting, and it was just all business, just like, tell me the facts. Whereas Colin finally said, okay, here's the real information, accepted it, and just completely fell apart in the way that I had before.

And I had never seen him have this amount of emotion before, ever. And that actually is one of, I'm getting chills now talking about it, one of, if not the most horrifying moment of my life was [00:19:00] watching him fall apart in this way. And at the same time, I was super proud of him for letting himself fall apart in that way, in front of 12 strangers.

Later we sat, I think for hours in that meeting room. They didn't make us leave afterwards. They were like, spend as long as you can live here. As long as you where, whenever you wanna leave. 

Jessica Fein: They're like, we're leaving. They made the quick exit.

Corey Corrigan: Yeah. So my parents were there. My sister and my husband's mom were there in the room and we just sat sort of in shock for hours.

And in that time, Colin, mentally processed. These are all the expectations, all the hopes and dreams I had for Harper. I'm letting those go. He's like verbalizing, oh, I wanted to do this, but now we're gonna do this. And I remember him saying, well, I'll take her to the park and we'll look at the stars. I said, she could be blind.

He said, well, then I'll tell her about them. It was almost like a movie. I still can't believe that he has this mind that I can't ever kind of reach that level of zen. But moving forward in the months and years now, that's followed, that's made it a little bit difficult [00:20:00] sometimes. To feel like you're connected because I'm over here grieving and he's just like moving forward in life.

And so we actually got to have for like feel like the first time the same reaction to something when Harper amazingly just started preschool a few months ago. It was amazing. It was something I never even pictured for us. I let go of any of that and so she started preschool and we went to drop her off together and we're in the car kind of like Ooh. And kind of like very happy, kind of half dancing in the car, but half like, Ooh, I don't know. And we got home and it was the first time that I've ever been anxious that he was also the same level of anxious. And in some ways it was like a healing moment just because of that. I was like, wow, look at us.

You're feeling the same thing. 

Jessica Fein: And that must have been, I imagine the first time the two of you were in the house together alone. Right. In the three years.

Corey Corrigan: Probably. Yes. Yeah. Yeah. Because [00:21:00] we lived at Ronald McDonald for half the time until the pandemic hit, and then we moved home, but we lived at the hospital, so yeah, it was the first time we were alone in our house and literally 30 minutes after she left, Colin was like, oh, I'm bored.

She needs to come back. This is, this is boring. Was this what it was like before? I don't like this. What did we do with all this time? Yeah. Yeah. 

Jessica Fein: Is she eyes on? Do you guys need to be up with her or have a nurse up with her? 

Corey Corrigan: Yeah. Yeah. She's 24/7 care because of the trach. Yeah. And ventilator. As you know, we finally have hit a place where we have most of our nursing shifts covered.

Jessica Fein: More power to you. That's amazing. We never got there.

Corey Corrigan: Yeah. It's taken a lot of work, but we are lucky enough that Harper is super easy to love. And she's really easy to care for. And the nurses, once they come, they don't leave as I wrote in their Christmas card. They let us have a life instead of just survive without them.

We can do that. [00:22:00] 

Jessica Fein: So another way that you and Colin are complimentary or that you work together and fit together is you were home for the first couple of years and Colin was working. Mm-hmm. And it somewhat recently, within the last year, you flipped it.

Corey Corrigan: Yeah. That's right. Yeah. The first year, obviously we were at the hospital, but luckily my husband is a software engineer and the pandemic hit so he was able to work from home, so he worked on his laptop.

Most these that we were at the hospital and I didn't, my work was insanely supportive to the point where now I, I work for them again. I basically dropped off the face of the earth and just kept them updated and they did whatever they could to help us, which was amazing. They didn't have to do that. And so yeah, I was home once we came home caring for Harper, we had very little nursing and I was also had severe PTSD from all the things we went through and depression.

And so I was [00:23:00] on disability for a while and caring for Harper. And then through the year that we were home, managed to somehow come out the other side of that and was kind of getting burnt out, just being the caregiver, you know, all the time. And especially without the nursing. Once this happened, all of the problems at work seemed so small and just that's not a real problem sort of feeling.

Right? Right. And so it made it a little bit hard sometimes to get motivated to work when your daughter is like fighting for her life and you're like, I don't really care about this right now. Like, this is not important. 

Jessica Fein: I remember I was in a meeting one time and there was a question about. Getting lunch or something and, and some guy said, oh, I have a feeding tube so I'll just take care of myself that way.

And I of course was like, oh wow, you know, of course cuz Dalia had a G-tube and, and I was like, wow, he's being really public and sharing it. And then I realized he was kidding around. And you realize just like people don't even know what they're saying and it's [00:24:00] just so weird. It's like a totally different reality, you know?

There's good and bad in that, right? Like it does give you a break from the intensity, but it also can seem, so just twilight-zoney. 

Corey Corrigan: Definitely, yeah. It's like you step back into this other world that you used to belong to and you're like, what is this? This is weird. Like, I don't, right?

All these people go home and they just get to do whatever they want and they don't have nurses in their house. 

Jessica Fein: And also by the time you get to work, I mean, this was always the thing I felt like by the time I got to work, you know, at 8:30 AM. What I had already done in the day was so much more than like, and, and you can't explain it, right, because when you're talking about the level of care of somebody like Harper or Dahlia, you know, I mean, it, it's so intense that it's hard for people to understand what it means.

Corey Corrigan: Exactly. I totally agree with that. And it, it always has meant a lot to me when people around me ask. Questions or if they do their own research and they know what the words mean, cuz it gets very exhausting to explain the [00:25:00] terminology constantly and not just be able to talk about your life without like a million.

And here's a dictionary. 

Jessica Fein: That's exactly the way people can show that they care, right? Is to do that research, is to do the reading, is to educate themselves and then also to ask, some people feel like, oh, it's so awkward and I don't wanna bring it up and I don't wanna say the wrong thing, but. You know, then you just feel like you can't be real with people.

Corey Corrigan: Exactly. And that's actually, I think one of the things I wrote to you before was I think saying, you know, the title of your podcast, I don't Know How You Do it can sometimes be said in a connecting way, in a learning way. Like, wow, I'm amazed at what you're doing. It must be really difficult. Tell me more about your life and what you're dealing with.

Or can be said as sort of like a dismissive way of like, I don't know how you do it. Wow, you're a superhuman. And that just puts you up on a pedestal that isn't accurate, but it also means you're alone up there. Like no one can ever relate to you if they just think that you're just [00:26:00] a super person that never has any trouble.

Jessica Fein: Exactly. And also I think it's kind of like, what do you say to that? What? What's the response? You know, like, yeah, I got, yeah, what's my choice? You know, it, it's a strange thing and yeah, most people probably are coming from a place of respect, but it is something that it's kind of like, yeah, this is what it is.

This is my life. So I think your point about the superhero is such an interesting one because I think that is, Also something people think like that, it's a compliment, but what they don't realize is it doesn't then allow you to truly honestly share with them, right? Mm-hmm. Because if they're like, oh, you're a superhero and you're so strong and you're this and that, that you know, and then how can you say to them, oh my God, this is so hard, right?

Because you're a superhero. You shouldn't feel that way. 

Corey Corrigan: Right, exactly. And it sets up this expectation, at least if you're like me and a perfectionist and like to do well in things, then if people constantly say to you, wow, you're doing [00:27:00] amazing. I've got all these things. You're doing all these things, you're doing for Harper and you're doing well at work, then when you have a hard day as you inevitably no.

Then you feel like, oh my God, now these people, what are they gonna think of me when I then have this really tough day and I can't talk to them now about this anymore because they don't view me like that. It makes it really, really difficult, at least for me though. 

Jessica Fein: You also, by the way, got promoted not too long after you returned to work, which is kind of amazing, and I know you think people would say, oh, you were able to do that despite what you have going on.

And you feel like it was more because of what you have going on.

Corey Corrigan: It's not like I think that going through what I have with Harper has prepared me for this. If anything, it was sort of a detriment, but I do think the perspective that it gave me and sort of the toolkits. That it gave me have allowed me to do well at work.

You know, I always sort of did well at work before, but my mentor when I came back, I've worked with him for 10 years, said, you're a lot more confident. You're [00:28:00] not afraid. You do what you need to do and you leave it at work. And I do that now because I have that. Like I said, that perspective of like, this is important, but it doesn't really matter that much.

At the end of the day, what matters is at home. I was a person before that had a lot of trouble with confrontation and I still don't love it, but being in the hospital for 11 months, And actually having to fight with neurology to treat her over months and months and months. I'll fight for my kid better than I'll fight for myself.

And that taught me how to do that. So now in a job that is pretty high stress and pretty high level with executives, before I'd been like, oh, kind of nervous about doing that. And now I'm like, I have practice. 

Jessica Fein: What else is in your toolkit now that wasn't before? 

Corey Corrigan: I think I was always sort of working on mindfulness, always sort of working on being still, and like I mentioned, I'm not a patient person.

When Harper was doing really poorly, I would [00:29:00] sit with her and just look at her face and just study her face and touch her little fingers and listen to her breathe and all this stuff. And I wasn't doing it on purpose for a therapeutic thing, I just was doing it so that I could remember it cuz I was constantly afraid that she would die and I would not remember.

And in doing so, sort of train myself in how to be mindful because that is a mindfulness technique, just being in the moment truly, and taking it in. Of course I worked on it in therapy, but nothing was more motivating than just wanting to be with my daughter. So it helped me be able to do that. 

Jessica Fein: If you now three years later could talk to the you who was Googling that night, what would you say?

Corey Corrigan: I've thought about this before and I think that the amazing thing that I would tell myself is I wouldn't change a thing. That's sort of crazy to think about. Like, yes, would I take away all the hardships she has to go through? Of course. But if Harper [00:30:00] remained Harper and just wasn't going to die early and didn't have to deal with a trach or seizures, that would be amazing.

I wouldn't change a thing about who she is, and I wouldn't change anything about what we went through because now I'm here and I'm actually, I feel like a better version of myself than I was before. So I guess I would tell myself to trust my dad because he told me in one of my worst breakdowns that I'll never forget.

He's like, Corey, I just really hope that you see that this could be a blessing if you let it be. It's not a win by any means, like this is not a good thing that happened, but you can let it change you in a positive way if you want. You know, you've always been afraid, you've always been anxious, you've always been trying to be perfect.

But if you just see that you don't have control and you will never have control and you let go of that, you will have a happier life. And I, at the time was like, this is bullshit. I don't believe that at all. That's [00:31:00] toxic. Positivity is all this stuff. 

Jessica Fein:I love your dad. 

Corey Corrigan: He's the best. He's the best. Yeah. 

Jessica Fein: Tell us about Harper's Village. 

Corey Corrigan: Yeah, so that's a new nonprofit that we're working on starting. It comes out of the idea that there aren't any resources that you can find that will give you a list of all the things that you could get for your child that is disabled or medically complex.

I don't know if you found this. But basically the only way that I find out anything in terms of toys or therapies or equipment or schools, basically anything to do with her life is through other parents a hundred percent. And it's all through Instagram and Facebook. It's not debt up anywhere. There's no database of things and to the point where most, if not all of Harper's therapists have never heard of the things that we're getting for her or asking about when they are regularly reference things with other parents.

She [00:32:00] needs to be in some sort of seating all the time. And we were asking, what is she supposed to sit in? Like she needs to be in something. And they listed out some things. None of them were very comfortable. They're all very hard. And so I finally went online and other parents were like, oh yeah, Peapod, that's what you get.

I showed it to her therapists and they were like, wow, this is amazing. What have you seen this? Like, you know, I've never seen this before and it's been around for a long, you know, years. And all of the parents in the cerebral palsies or community are aware of it. I don't understand how it hasn't been brought forward to the medical community.

I feel like the medical community is not trained well or at all about the realities of home life with children that are medically complex and disabled, and they just have this sort of pie in the sky. Yeah, that'd be great if that's how it actually works, but that's not how any of that actually happens.

Jessica Fein: Oh yeah. And for us, Dalia was [00:33:00] 9 when her condition changed dramatically, when she got trached and got her G-tube. So we came back home thinking, you know, we're gonna just adjust. And first of all, of course the house wasn't at all set up, but mm-hmm. Before that, even before she was discharged, I was sitting at home waiting for the deliveries of the equipment and supplies.

Nobody had given me any idea of the volume, of the, the use, just how much stuff there was going to be. So, I mean, the gauze alone, right? There's like 27 different kinds of gauze or the tubing, you know, there was tubing for this machine and that machine. And knowing that all of these boxes in, they're just bringing them all, you know, these mover guys are bringing them all in.

And nobody had prepared us. We knew the very basics, but there's so much, and I couldn't agree more, that there was no bridge between. Mm-hmm. What was happening in the hospital and then what was happening on the home front or what was about to happen on the home front. And you really are left to fed for yourself [00:34:00] or find those places of support. So Harper's Village is gonna be a great, great thing. 

Corey Corrigan: Yeah. We thought, why don't we create a resource that, you know, number one, catalogs, all of that stuff. But number two sort of guides you through what could be helpful. Because I think the other side of it is you don't really know what you don't know.

And this is the ultimate, you don't know what you don't know, because. No one can tell you except for other parents. That's the main purpose of it. The the backhand of it is, I'd love for it to also be an avenue for long-term donations, almost like recurring donations throughout somebody's life. Because I think the other side of this, that other parents or families', Your doctors don't really appreciate is the long-term nature of the help that's required.

And so like we have raised money for Harper's Peapod, for example, we raised money for a wheelchair, a electric wheelchair for her cuz insurance wouldn't pay for it. And that's great and amazing and we are so thankful for it. [00:35:00] But I think what people don't understand is those needs are gonna keep coming up.

Over and over and over because she's gonna get bigger and she's gonna develop or lose abilities that then require different equipment and different things. 

Jessica Fein: It sounds like it will be such an important resource and help so many people. 

Corey Corrigan: Thank you. Yeah. I'm working hard on it now. 

Jessica Fein: In your spare time? 

Corey Corrigan: Yes. In all that spare time that I have, 

Jessica Fein: Well, I'm so grateful for you for coming on and sharing your story and letting us get to know a little bit about your family, not only you and Harper and your husband, but your dad too and sa.

Just such a special family and I'm so grateful to know you now. So thank you so much.

Corey Corrigan: Yeah, thank you so much for having me on. It was wonderful to meet you.

Jessica Fein: Here are my takeaways from my conversation with Corey. Number one, we are capable of so much more than we think. Whether that's caring for a critically ill child or something else altogether, most of the time when we think we can't do it, [00:36:00] the truth is we can do it. We just don't want to. 

Number two, perspective. When you go to work or to the grocery store, wherever, keep in mind you have no idea what the person you're talking to is dealing with in their own life. 

And number three, Toxic positivity. Sometimes what you think is toxic positivity is just positivity, a way to find joy in a really tough situation.

I hope you enjoyed this episode. Hope you'll share it with a friend. And if you haven't already, take a moment and rate and review the show. That means so much to me. Have a great day. Talk to you next time.