005: Joy Harmon on Coping with a Newborn in the NICU

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Today, I’m speaking with Joy Harmon—a courageous woman who has overcome more than her fair share of hardship.

Only 15 weeks into her first pregnancy, Joy had a placental abruption. She underwent a C-section and spent four months watching over her daughter in the Neonatal Intensive Care Unit. By the time her first daughter was two years old, they had their second little girl, who also spent time in the NICU.

And if life wasn’t challenging enough, Joy was also diagnosed with breast cancer years later. This life-changing experience led to her non-profit organization, Bringing Joy, which provides support for families coping with cancer.

In this conversation, Joy sheds light on the post-traumatic stress of going through NICU twice and how she found joy, even when her kids were fighting for their lives. 

Joy talks about the difficulties of pregnancy not going as planned, the aftermath that no one can prepare you for, and how to explain to your children that you’ve been diagnosed with cancer.

Key Takeaways with Joy Harmon

• None of it is easy, but we came out on the other side which doesn’t always happen.
• How do you prepare yourself for the aftermath of having a baby in NICU?
• Learn about early intervention and keeping up with your child’s therapies.
• Speak up when something isn’t going right.
• Why it’s okay to ask for help as a parent..
• The most surprising extension of family that you gain during unexpected traumas.
• Navigating the difficulties of having one child in NICU while the other is at home.
• The PTSD that comes with being a NICU parent.
• The good and bad of being prepared.
• Seconds to figure out how to deal with life changing circumstances.
• Be willing to assist others who are going through similar difficulties.
• The importance of celebrating the little things.
• The truths that come out of having a NICU child.
• Knowing there is joy even during years of difficulty and depression.
• How do our children inspire us to be better?

 Joy Harmon Tweetables

• “Even in the hardest of times, there are still good things.” – Joy Harmon

• “I can still smell it, I can still feel it. And I know the pain and the exhaustion, but you’re not alone. And I think that’s so important.”– Joy Harmon

• “It’s important to try to reach out to people and I think it’s important if you’re in that situation, to talk to someone, even if they’re a stranger to you.”– Joy Harmon

• “The most important things are to never give up hope, to be your child’s best advocate. Lean on those that love you and take it one day at a time, but most importantly, just love your baby. Trust your gut, trust that parent instinct that you have, and celebrate all of the little moments, every single one of them.”– Joy Harmon

 Resources

• Bringing JOY Website
• Bringing JOY Facebook Page
• CaringBridge
• Cancer Hates Kisses by Jessica Reid Sliwerski, Mika Song

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Transcript

[INTERVIEW]

Jamie Freedlund: We would like to welcome Joy Harmon to the podcast today. Hi, Joy.

Joy Harmon: Hi, Jamie, thank you for having me.

Jamie Freedlund: We’re so glad you’re here. We are inviting listeners to come along as we discuss finding joy in the journey. Thank you for sharing your story with us and our intention is that others will be alert. We’ll learn a few things and be inspired and find more joy in their journey by hearing it. So, we appreciate your time today.

Joy Harmon: Thank you.

Jamie Freedlund: I wanted to start out. So, you’ve had not just one, but two NICU journeys, which I wouldn’t wish on any mama, to be honest, but would you be willing to talk to us about those experiences?

Joy Harmon: Absolutely. So, the first one was a little bit different than the second one. The first one, I had a placental abruption at 25 weeks’ gestation, and my little one was born at 1 pound, 8 ounces, and about 12-¼ inches long. So, she was a little peanut. She was considered what they say a micro preemie. We lived in Atlanta at the time. We currently live outside of Chicago now. But I woke up having some pain, ended up in the hospital, and there she arrived. I had a stat C-section, and she was unfortunately barely alive when she was born. She had an Apgar score of 1, if that means anything to anybody.

Jamie Freedlund: Yeah, that’s a scary score.

Joy Harmon: Yeah. So, after a couple of shots of epinephrine, some CPR, they stabilized her, and then she went up to the NICU. Since we had never been to the hospital before, we were just a little surprised, come to find out we were in one of the largest birthing hospitals and we were in a NICU that was 125-bed NICU. So, anyone that’s been in the NICU knows that’s pretty large.

Jamie Freedlund: Yeah.

Joy Harmon: I will say that it was a long three and a half, almost four months that she was there. It was overwhelming physically and mentally. It was very emotionally exhausting. At one-week old, we found out she had a grade 2 and a grade 3 brain bleed. So, that was probably the biggest after her birth, gut punch. My background is in Special Ed, so I understood for the first time after a week of hearing all the medical jargon exactly what we were up against. And it was pretty devastating, especially being a first-time mom. I was like, okay, this is going to be a little different than what I was anticipating, but I will say that she did overwhelmingly okay.

I would say the first probably seven weeks was the hardest. Every week, it was something new if it was a different change from the vent to the CPAP to high flow to more and more things. We had a PDA and then that closed and then we ended up with another hole in her heart, and it was just very, very, very overwhelming. I ended up blogging a lot of it. I used a CaringBridge page and I compared her NICU journey to what they say, the NICU was like a roller coaster, and I kind of compared our life at that time to different rides. Some days, I would say like, “Oh, it was a great day.” Well, no day in the NICU was great, but it was a good day. It was like a day on the swings. Another day was like, “Oh, we were in the giant drop.” Like, there were multiple days where I clung to her little candle that I kind of borrowed from somebody else and just begged and pleaded to keep her because there were so many times we almost lost her.

It was probably one of those that, at that time, the hardest thing that we had ever dealt with, and we just had to kind of hold on to hope that she was going to be okay. We held on to our family and friends. Everyone supported us. Like I said, we were kind of alone, but I was a teacher, and people just kind of showed up with meals, and we had two really great friends that kind of helped us. And then all of our family and friends at home was just so supportive, but after about eight to nine weeks, things kind of started to stabilize a little bit more, and you kind of moved to the feeding and growing, but at that point, then it just seemed that everything just took so long. She was struggling to eat. She was still struggling to breathe, and we were kind of feeling like we were never going to leave that place, but there were also good things like we got to sit and watch every little move of hers. We got to be there together and spend as much time as we could.

I always say the people behind the locked doors, which is the NICU staff, a lot of the nurses almost became like family. I would bring them hot chocolate and little treats, and they were just such a huge support and helped us in tremendous ways. None of it was easy. I would never, ever say that it is easy, but we came out on the other side, and I know that’s not always the case for everyone. So, we were full of gratitude that we got to bring her home, but we knew it wasn’t going to be easy. So, that was kind of the NICU part of it. I will say the aftermath of bringing her home from the NICU, no one can prepare you for that. I did not realize how hard that was going to be. It was very difficult.

We brought her home and she stopped eating as soon as we got home with her, and I knew from my family being in education, and like I said, my background is special ed, I knew that the best thing was going to be for her was an early intervention, getting her therapies, following up with her specialists, and honestly, us doing a lot of the work. When you’re in the NICU, you have the doctors and the nurses telling you your every move. This is what you need to do this, this is how much…

Jamie Freedlund: Yeah, they’re your guides while you’re in the hospital.

Joy Harmon: Yes, it was like being on a tour with a guide versus going on a trip without a guide.

Jamie Freedlund: Thank goodness, you had that background, particularly not just as an educator, but as a special educator. And you already knew this world a little bit, yes, on the other side of the table, but you knew that early intervention existed. You knew that there were these therapists that you could and should reach out to. What would you say to a parent as they’re leaving the NICU and they don’t already know that, like where is their starting place? And social workers are amazing and often them in partnership with pediatricians and neonatologists will help parents navigate the start of that, but if they haven’t experienced that, do you have a suggestion of where to start?

Joy Harmon: I do. So, depending on what state you live in, first and foremost, I would say you have to bring your baby to the pediatrician right away when you get home, whether you have a preemie or you have your baby full term. So, that’s always a great place to start. Ask your pediatrician, who do I reach out to in the state of Illinois, it’s early intervention in whatever county you live in. It’s not early intervention.

Jamie Freedlund: It is early intervention.

Joy Harmon: It is, okay, yeah. I was like, wait a minute because it changes that group, sorry. I was like way after…

Jamie Freedlund: Early intervention is birth to three.

Joy Harmon: Birth to three, sorry, sorry.

Jamie Freedlund: No, that’s great.

Joy Harmon: I’ve tripped myself up there. So, obviously, your pediatrician, but then you can just like whatever county you live in, just Google that, early intervention. I’ve actually helped several people, like when I talked to NICU parents, I’m always like, so make sure you contact early intervention if they’re in the state of Illinois, like we were in the state of Georgia, so it was a little bit different there, but it’s still someone in the county but truly your pediatrician, they can always set you in the right direction. And I want to tell you it’s not anything to be embarrassed about or to feel like, ah, maybe something’s not right.

Well, first and foremost, when you have your baby very early, things are going to be complicated. And even if you have a full-term baby, things can be complicated, and it’s okay. I think sometimes, you feel like, oh gosh, I’m asking for help. Please ask for help, like that’s the baby’s best medicine is getting that early intervention, getting people that that’s what their job is, that’s their specialty. They can tell you if it’s a feeding thing, if it’s a sensory thing, if it’s a physical thing. Emma, that’s my daughter’s name, that was born at 25 weeks. She had five therapies every week for the first almost three years of her life. They came into my home, and that was my whole life for three years. We kind of lived in a bubble because she was very susceptible to getting sick. And it was just me and the therapist.

And I will tell you that when you leave the NICU, I know, I’m still very close with a lot of the NICU nurses, they say, “We do everything we can,” as I say, behind those locked doors, but it’s what happens when you bring them home. And I will say it wasn’t just me, it was a village that got us, got my Emma to where she is today. And that’s so important. They can just touch things if you feel like, oh, this isn’t right. Just speak up, say I feel like she’s not eating right or he’s not eating right, or their tummy hurts after this because reflux is a big thing with preemies. And not only did I get to do it one time, I got to do it two times, my second pregnancy. Oh, go ahead.

Jamie Freedlund: No, you’re fine. I just wanted to echo, I’m really grateful that you’re letting parents know it’s okay to have this added team because I think it’s really easy to feel like I’m the mom, I’m supposed to know how to care for my child and do it all myself. And if you do that, particularly with a NICU graduate, you’re going to burn out as a mama and you’re going to have a lot harder time. So, those therapists and EI professionals and your doctor and your team, they’re just an extension of family in a way that you didn’t realize they could be. And it’s so important that first, particularly birth to five, most of our kiddos’ brain is developing in those years, and all the help we can give them is so important. So, yes, I would love for you to share with us about Finley, too, because she helped extend your roller coaster. And I really love that you talk about how on your blog, it was different rides each day because it’s true, you’ll often hear the NICU referred to as a roller coaster.

Joy Harmon: Yes, it really was. Yeah, I talked about that being– because really, it was challenging, but we all get there.

Jamie Freedlund: Yeah, absolutely.

Joy Harmon: I was kind of saying after Emma turned about two, we considered having another one. And so, we went to all the specialists to see like, why 29 years old that I have a placental abruption. There was really no reason for it. So, I got the okay, the green light to try it again. And this time, we had a pretty typical pregnancy, but at about 33 weeks, I kind of started having some pain, but I had never been in labor before. So, they always said, “Here’s the deal, if the pain goes away, then you’re okay.” I’m like, “Okay.” So, I kind and come and go. And I had gone to my checkup, and the nurse that I saw all the time, she’s like, something was wrong. And I was like, yeah, I was like having this pain. So, I ended up having to go to be checked, and then they put me on a monitor and they’re like, oh, things seem to be okay, but we’re going to give you the shot for the baby’s lungs just in case something goes wrong. I was like, okay. And so, we did that, and I already knew I was having a girl. So, they were like, okay, she looks okay, blah, blah, blah.

So, we did an ultrasound. So, then they decided to keep me just overnight just because they were going to have to do the next set of shots 24 hours later, and in the night, I started having contractions, apparently, and because of the birth of Emma, I could not go into labor. So, I ended up having a baby this time in a very calm C-section. I got to walk in, no one was throwing me on gurneys and things like that, and my baby cried when she came out and she was huge for being 33 weeks. She was 5 pounds 4 ounces.

Jamie Freedlund: Has noise and sight ever.

Joy Harmon: Yes, because when Emma came out, there was no noise, and I just kept screaming, “Why isn’t she crying?” And so, Finley, my big baby, 18-½ inches, 5 pounds 4 ounces, seven weeks early.

Jamie Freedlund: Which is not a big baby, but I love that you defined her as your big baby.

Joy Harmon: He was huge. And she looked just like a little baby. And my husband got to cut the cord, and everyone was happy and cheering, and it was lovely. And they even unhooked my hand because if anyone’s had a C-section, you know that they pin your arms down, and they unpin my arm so I could touch her. And then I looked at her, and the neonatologist was so happy. She looked so great. Her lungs sound clear, and I was literally like, “I think she’s struggling to breathe. I think you need to take her to the NICU,” and she’s like, “Yeah, you’re right. Oh, okay,” because I knew what that looked like when a baby’s…

Jamie Freedlund: Says the former NICU mom.

Joy Harmon: Yes, but I will say that even though we had our big baby that went to the NICU, and it was very different, and our family was outside and they actually got to come in and see her, that just was on oxygen for two days. I will say that it was, this is going to sound ironic, but harder than the first one. Being in the NICU for three and a half months and being in the NICU for three and a half weeks, you would think that it’d be easier, but for some reason, it hurt almost worse. I imagined the second time I was going to sit in a hospital bed, and my little girl was going to sit next to me, and we were going to take this picture, and it was going to be great. And that’s not really how it ended up, but she was healthy and she was breathing, but this time, we had a two-and-a-half-year-old at home, and I had a husband then that the schedule was not as flexible, and I couldn’t drive. And so, luckily, we had family close that could help, but again, all the support came, people were reaching out and helping meals and gifts and little things that we were supported, but it just hurt our heart. And I learned quickly that I had major PTSD from being a NICU mom the first time.

Jamie Freedlund: I can only imagine. And that was triggering all sorts of feelings, I can only imagine.

Joy Harmon: Yes. It was very difficult. My husband and I would sit there because you’ll never forget the beep and the ding. And we’re like, oh, that bed humidifier is low, that’s why it’s beeping. And oh, that baby’s desatting over there. Like, oh, the feeding pump’s done, like, you just don’t forget those noises, and I can hear them right now talking about it. And the smell of a NICU will never leave you.

Jamie Freedlund: Can I just say, with the pandemic, there’s been a lot of Purell, and that smell takes me to the NICU in a second? And I have had moments that I just smell it and it just this rush of emotion due to the smell of a hand sanitizer.

Joy Harmon: Yeah. For me, it’s CaviWipes.

Jamie Freedlund: Yes.

Joy Harmon: And I will talk a little bit more about triggers, but yeah, we actually visited a NICU. I still have never been visited, like when you have a baby and you get to visit the hospital, you get on your tour, whatever. So, I’ve never done that, but I did visit the NICU when I was pregnant the second time, and thank goodness because I ended up there, but I walked in the door, and they were like, “Oh, you can come in here.” And I went to wash my hands, and that NICU’s smell came in, and I just started sobbing and I ran out like, I couldn’t even handle it. So, as I’m laying there, having had my baby, all I keep thinking about is, oh my gosh, I have to go back into the NICU. And it was hard, but she was healthy, and we could feed her, but all those memories came back like the first time. They’re like, you have to give her a bottle because when you have a preemie, you don’t just put a bottle in their mouth or you don’t just nurse them. Like, that’s not how that works. It’s not natural for them.

Joy Harmon: So, feeding them is very different, you have to teach them to eat. So, you get these tiny little bottles, and it’s like a little bit at a time. And it’s like this short pour. It’s this big thing. If you’re a NICU mama or dad, you know exactly what I’m talking about. And so, feeding Finley all of a sudden, they’re like, “Who’s going to try to feed her first?” And both my husband, Aaron, and I are like, “Not me,” because it’s so stressful. Like, you’re watching the monitor, even though you’re not supposed to watch the monitor, and you’re like giving a little milk, but not enough, and that sideline, and this whole thing. And so, we had a lot of giggles because we were like, “Oh, we’ve been here,” but we knew what we were in for. So, he did end up feeding her the first time, and she was a decent eater. She did desat sometimes and stuff. And you know then if they do that while they drop their heart rate while you’re feeding, then you get five more days in the NICU, like the NICU…

Jamie Freedlund: And you guys knew all this. So, I love that there was a dread. You weren’t like a new parent saying, “Yes, I want to be the first to do it.” You’re like, “No,” you’ve got that.

Joy Harmon: So, I mean, like I said, there were lots of giggles, but then the reflux popped in which we understood. And they can’t be elevated to go home, safe to lay flat. And then it’s like you give them meds. And so, they realized right away, every time I met someone, they’re like, “Oh, you’re a second timer, right?” “Yep. Yep, that’s me.” And there are so many things that you already know, which is kind of good and kind of icky because you’re kind of prepared and then you’re kind of arguing your case, like, “Hey, I know how this works.”

So, one of the doctors– and also, it was totally different. We were in Illinois now with a smaller NICU, but anyways, it still hurts. I guess that’s the point. No matter if you have your baby at 24 weeks, at 25 weeks, at 30 weeks, at 32 weeks, at 40 weeks, at 42 weeks, and you’re in the NICU, even if it’s for five days or five months or a year, it’s just not what you thought it was, what you’re birthing…

Jamie Freedlund: Not what you had planned.

Joy Harmon: Right. Yeah, what your birthing experience is going to be like, it’s not what you had planned, and you are in seconds trying to navigate it, but you find your rhythm and you hold on to hope and you just sit there and remind yourself that this is the best you’d be watching that you’ll ever have the privilege of watching because that’s what I used to say when I couldn’t hold my baby, but I got to watch her and…

Jamie Freedlund: In her condo. I love that you use that word because it’s true. It’s like, I think, a NICU universal term. That’s the condo.

Joy Harmon: It’s their condo.

Jamie Freedlund: Which is an isolette, I mean.

Joy Harmon: Yes, I know.

Jamie Freedlund: Incubator for those of you that don’t know, but yes.

Joy Harmon: Yes. So, yeah, I mean, but then Finley came home, too, and she got to meet her big sister after three and a half weeks because Emma was too young. So, she got to see her through a window, but then she, as I say, for the first time, got her clean hands on her because we’re a little bit germophobes in my house now after having two NICU babies.

Jamie Freedlund: You come by it very naturally.

Joy Harmon: Yes. So, those are my, per se, NICU journeys. I will say that that’s what NICU life was like. Obviously, I can talk about it now with some giggles, but it was by far, the hardest thing that we had to deal with, and it wasn’t easy, but it’s important to know that you’re not alone. Like anytime I reach out to another NICU mom or dad, I always say, like, “Find your people,” like find someone else that has been in similar shoes. None of our shoes are the exact same, but there’s someone that’s been in similar shoes, and reach out to them, and maybe they’re not ready to talk to you. And that’s okay. But just let them know that you’re there for them and vice versa, like if you are a new NICU mom or dad, and someone’s reaching out to you, they’re not doing it to be nosy or to be invasive, they’re just doing it because they want you to know that you’re not alone and that they’ve been there. And if there’s anything that you need, they want to try to help.

I just have been messaging with a young NICU mom, and I just like, I can feel it, I can hear it, I just want to hug her, I just want to be like, “Oh, just hold on tight,” like I always just say, just hold on tight. I mean, so it’s been 11 and 9 years later, and I can still smell it, I can still feel it. And I know the pain and the exhaustion, but you’re not alone. And I think that’s so important.

Jamie Freedlund: And I love your advice to be willing to assist other parents going through it because I think most of our friends who have children and even those associated with us don’t end up in the NICU. It is still more of a rare experience. However, I think all of us have individuals in our circle, whether it’s individuals once or twice removed that end up in that situation. And I know that some really sweet moments have come with people that I don’t really know, but so-and-so tells me, “Hey, they had a NICU baby,” and I love that you said, “Don’t be afraid to reach out,” because, yeah, they may never even reply, but the few that do over the years, you can make a really big difference by just saying, “Hey,” because I remember I had those people that there was no one that I knew that had had an extended NICU experience. And there is a mom who had spent a lot of time at Cromer, and she was a lifeline for me, even for things like insurance questions. And hey, how do you do this? And it’s people you don’t expect often.

Joy Harmon: Yeah. When we were in Atlanta, we ended up meeting four other families, and then I met a couple outside of this group, and they all had 24 or 25 weekers, and it’s 11 years later, and I still talk to them. And I don’t even live in that state anymore.

Jamie Freedlund: You’re bonded for life.

Joy Harmon: Yes. And we’ve been back a few times and seen them. And yeah, I agree. And I think that’s important, like, they may never respond to you, and that’s okay, but I feel like it’s important to try to reach out to people and I think it’s important if you’re in that situation, like it’s okay to talk to someone, even if they’re a stranger to you.

Jamie Freedlund: Yes.

Joy Harmon: I mean, I know that probably sounds weird, but…

Jamie Freedlund: It does until you do it, and you realize, “Oh, I’m so glad I connected with them.”

Joy Harmon: Yes. Yeah, I agree.

Jamie Freedlund: And definitely, you gave a little bit of this already in finding your people, but what advice would you give a mom right now in the NICU?

Joy Harmon: Well, I’ve been thinking about this because I think sometimes, I just say it, but I think the most important things are to never give up hope, to be your child’s best advocate, that is probably should have said  that first. Lean on those that love you and take it one day at a time, but most importantly, just love your baby. Trust your gut, trust that parent instinct that you have, and celebrate all of the little moments, every single one of them.

Jamie Freedlund: I love that celebrate. That’s something I’m sure I’ve said it to you because I’ve said it to so many people over time, but it’s so important to celebrate your milestones with your baby. They might look really different than someone’s healthy, full-term baby, and that’s okay because if you don’t celebrate, it can get a little dark sometimes. And you got to choose a little bit of celebration in that.

Joy Harmon: Yes.

Jamie Freedlund: I love your advice, and I like your quote earlier, hold on tight like you’re in for a ride, but you’ll learn from it and it’ll make you stronger.

Joy Harmon: And even someone telling you, you still cannot prepare for it. It’s unbelievable.

Jamie Freedlund: But there are some really sweet moments in it. Yes, it’s really hard, but there’s some sweet with the bitter.

Joy Harmon: I always say how many people get to watch their baby from 25 weeks on grow, like the last half of your…

Jamie Freedlund: Oh, I love that perspective. What a bonus.

Joy Harmon: Yeah, like every time I see someone, and they’re like, “Oh, I’m 25 weeks’ pregnant.” I always say, “Oh, I know what your baby looks like,” and they’re like, “I’m sorry?” And I said, “I imagine having your baby today. So, I got to experience all of her little things in the world.” Like, when she opened her eyes at 10 days, like, I got a picture because the nurse took it right away and sent it to me. So, yes, exactly, there are a lot of little things within that very scary time that they’re irreplaceable.

Jamie Freedlund: What a beautiful perspective. Thank you for sharing that. I am sure there are several, but what are some that come to mind, life lessons, truths that became pretty clear during your experience in either NICU experience or both combined?

Joy Harmon: I think I quickly realized that life isn’t easy and that everyone has a story. And so, it’s important to be patient and to be there for others and even in the trying of times to find a little joy. I just remember thinking to myself like, “Gosh, I just will be so great when I can yell at her one day,” like when I’m not begging to keep her, I’m just like, mad at her for doing something silly. And I still to this day, step back, and when she’s doing something, and I’m like Emma and I think, but I got to keep you. And I know that that’s not always the case.

And so, I think I find joy in those things that maybe aren’t so joyous because I realize that we’ve had a couple of hiccups in life. And that when we came home, life was not easy and that I went through a really dark time. I had a few years of just feeling like, oh my gosh, like, this is hard. And I had a hard time understanding that there was joy, I was going to learn to find the joy in the hard times, but it took me a little while. And so, I think some of those life lessons were just like understanding that even in the hardest of times, there are still good things. I have the privilege of being the mom to two very sassy, stubborn, wonderful little girls, and the stubbornness is because she was willing to fight, and this nastiness is because she’s challenging and her brain is working. Then my other one that’s just full of sweetness is just like, hey, it’s like my mommy heart needed that, like in all the hard, I needed that soft.

And so, I feel like I look harder to add the little things than the really big things. There are just so many moments where I felt like we couldn’t move on and then I look back and I’m like, “We did, we were able to get through that.” And we kind of live by, we can do hard things in our house because we’ve been doing hard things for a really long time. So, that’s probably number one. And I always had said, we will get there all in due time, and sometimes getting there looks different than what I expected, but in due time, we’re getting somewhere. We’re moving forward.

Jamie Freedlund: Beautifully said. I feel a lot of truth in a lot of what you just shared. And my daughter’s so sick of me saying we can do hard things, it is like my mantra. So, I did recently add on the we can do hard things, but we can do all things through Christ. He strengthens me. And because I feel like it’s really easy for me to shift to the I can do it all myself. And that was a helpful mind shift for me. Not everybody, but for me, that was a mind shift, so.

Joy Harmon: Yes.

Jamie Freedlund: I know Joy, so I know a little bit more of her story. And if you’re comfortable, I’d love for you to share sort of how these experiences with Emma and Finley have shaped the way that you’ve managed life’s circumstances since. And you said it really, well, that you realize that life is going to have some really hard parts. By design, I think the hard parts make us more who we’re made to become, but you’ve had some mountains to climb even since your NICU journeys. Would you share some of that with us?

Joy Harmon: Sure. So, about two years ago, when I feel like we were really out of our fog because I feel like we were living in fog for a while, dealing just with little things here and there, and my girls were six and nine, and I was diagnosed with invasive lobular carcinoma breast cancer. I was triple positive, sorry.

Jamie Freedlund: Apologies.

Joy Harmon: So, when big things happen in your life, your brain goes in 100 different directions. When it happens to your children and when it happens to you, it’s two totally different things in my experience. So, when I was diagnosed, the first thing that went to my mind was my children and my husband that I feel like I have put through so much with two early births. Not only did that affect me, that affected him. So, here, once again, I’m going to turn our life upside down. And so, it was so unexpected, but at the same time, not really. I always used to say, I just hope I make it to 40. I don’t know why I’ve always said that.

And I was diagnosed two weeks after my 39^th birthday. And so, I was not sure where that was going to go. And so, understanding that you have to be your best advocate for learning to be an advocate for my children, I went and got multiple opinions, multiple surgical opinions. And as soon as I was like, found out this is what you have, I went into full on research mode. I reached out to a friend’s mom that was in the middle of treatment and asked her some questions. And then, I just put my head down and I was like, we are going to get through this. Like, there was no more time for crying. There was only time for a plan and how we were going to get through this. I bought a book for my daughter called Cancer Hates Kisses, and I sat down with them once I had a plan, and they were upset about the title because we don’t like the word hate in our house. We’re just not a big fan of the word.

Jamie Freedlund: But the same way, I understand.

Joy Harmon: And so, they’re like, “You’re saying a bad word.” And I was like, “Well, let’s get over the bad word for a minute.” And so, we talked and they’re so different, very stubborn, very emotional, and trying to learn how I was going to deal with this. And ironically, I used Emma’s NICU experience as a way to explain to my children what was happening to me. We didn’t use the word sick because my youngest is scared to get sick. So, I had to figure out how I was going to explain this. So, we talked about cancer and what it was, and this book is amazing. If anyone ever is dealing with breast cancer and littles, that’s the book to read.

Jamie Freedlund: We’ll put it in the show notes for sure because I want families that are looking for that to find it.

Joy Harmon: Yes, Cancer Hates Kisses. But I talk to them and I explained, like, these are the things that I’m going to have to do. I might not feel well, so on and so forth, but I looked at them and I said, “Emma dealt with so much.” We listed all the things that she’s dealt with in the NICU, outside of the NICU, all the specialists she had to see, and tests that she had done. And so, I could explain to my girls the tests that I was going through because Emma had experienced similar ones.

And ironically, it felt a lot like a NICU experience, like it was just there, and you had to deal with it, but it was how I reacted to it this time that was so different because I learned like I had to be strong. I could not just go in a corner because I had two little people looking at me and I had to watch Emma fight, and now, it was my turn to fight. And so, we could talk about it. We could talk about what Emma had experienced and what a fighter she was and that I had learned from her. I had learned what it means to be a fighter. And so, now, it was my turn. So, ironically, they kind of understood a little bit, Finley, my youngest, not so much because she was six, but this book helped, and we talked about a lot about it.

And so, there we went, and I will tell you that because I had experienced just the heartache and the medical world, I was able to navigate this a little bit easier. I had become stronger. I had learned that when things get tough, you have to move forward. You can’t stay in an icky place. And I felt like after Emma left the NICU, she was just in an icky place for a long time. I was having a hard time navigating life and life outside of my home, like I was okay in my home, but outside, like no one understood.

Jamie Freedlund: Easier to go into a bubble and keep everything else out.

Joy Harmon: Yeah. And this time, I wasn’t going to do it. I was not. I always say Emma almost broke me, not Emma, but the experience and I did not…

Jamie Freedlund: Experience of having Emma?

Joy Harmon: Yes, the experience of having Emma almost broke me, but I was not going to let cancer break me. So, as I finished the conversation with my children and my husband, we sat there, and I said, “I don’t know why I have cancer, and I will never ask why. Sometimes, people just have to deal with different things,” I said, “but what I will tell you is something good is going to come out of this.” I have to believe that. I have to believe that breast cancer at 39 after two NICU journeys, which again, I know is not the worst thing in the world, but very difficult.

Jamie Freedlund: It’s very challenging. You’re saying it lightly, though you’ve experienced three very significantly challenging parts of…

Joy Harmon: So I just said, I’m like, “Something good has got to come out of this.” And I had neoadjuvant chemotherapy, and so, about treatment 3, I was with my sisters and we are big Black Friday shoppers, and I was going to finish treatment right around there. And if I stayed the course, like, I would be done and I’d feel better because I had a really rough chemo treatment, and so, I was sitting there, we were talking with my nurse and we were talking about Thanksgiving. Like I had once again, huge support system, I mean, meals and gifts and little things and big things. And again, for the third time in our life, everyone showed up again, and I said, I feel like we need to do something for people that are going to be here the week of Thanksgiving, like not only are you getting chemo treatment, but then you got to go home and feel icky.

And so, we decided that we were going to pack a hundred little bags of my favorite chemo things. And for the first time, I was going to be able to give back because for so many different times in my life, I tried, I tried to give back. I try to reach out to people, but I never felt like it was enough. It was never enough for all the support we have been given. And so, we were going to do this and then my little bag of 100 bags the week of Thanksgiving after asking for some support from my community and from some friends that help to have a fundraiser, not for me, but for my little– they’re now called Little Bags of Joy.

We ended up starting a nonprofit because the donations just kept coming in, and people kept reaching out wanting to help. And so, my 100 Little Bags of Joy had turned into thousands and thousands of Little Bags of Joy and giving back to others with cancer because cancer didn’t break me, or it hasn’t yet, at least.

Jamie Freedlund: Nope.

Joy Harmon: And we just wanted to pay it forward for all the support that we’ve had through our NICU journeys through just life and then cancer. So, we started a nonprofit called Bringing JOY, and it’s our way for the last almost 12 years of life, paying it forward to others to bring a little joy and sunshine to those diagnosed with cancer. So, we now give to six local cancer centers each month. We mail out boxes to families or to individuals with cancer and just have a few other things under our belt right now, but I really feel like when your back’s against the wall three times in your life, and it doesn’t break you, that you learned that the importance of the little things and the importance of paying it forward when so many people do things for you because I know not everyone, and lucky is not the right word, but not everyone has the support, like in the NICU, when something medical happens to your family or anything big, not everyone has the support.

Jamie Freedlund: It’s true.

Joy Harmon: So, we wanted to make sure that in this, we can’t reach everybody, but we’re doing our best to reach as many people as possible. I think that’s why I love my Mattea’s Joy so much is because something big happened in your life, and you found the joy and you were able to give to others, and not for so many years, in that capacity, I couldn’t do it. It just felt like all these little things just kept piling and piling. And so, when this happened, I was like, No, like, we’re not going to the dark place. We’re going to figure this out. And I did. I mean, we have six rounds of chemo, multiple infusions, multiple surgeries. It’s still going, but I will say that when you learn a little bit about the medical field and you’ve been in a NICU or in a PICU or any ICU, there are just some things that you learn, and it kind of transfers from one place to another. Maybe it’s a little baby, or maybe it’s an adult, but it’s still hard and…

Jamie Freedlund: Very true.

Joy Harmon: We definitely live, like I said, we can do hard things and we are doing them, but it was very different this time when it was me and it was not them, but we’re still standing, all four of us.

Jamie Freedlund: I would say that you’re not just standing, you’re thriving. The fact that you’re in a place that you could pivot and serve outside yourself speaks more than you’re giving yourself credit for. And I think that you’ve discovered something that I almost feel selfish at how much joy service brings me. And I think if more people knew that, even if it’s itty-bitty acts of service, it unlocks joy. And the fact that you call your organization Bringing JOY just makes me smile. So, I said at the beginning of our podcast that Joy’s name is Joy, and I love that it started with your favorite things that got you through chemo, and you took your experiences and said, “Hey, I know these things.” I want to turn outward and say, “Hey, I want to make your journey a little better.” If someone wants to support Bringing JOY, what’s the best way they can do that? And where can they find out more about Bringing JOY?

Joy Harmon: So, we have a website, www.BringingJoy.org. We also have a Facebook page. It’s called Bringing JOY Inc, or you can email me at bringingjoy2019@yahoo.com. So, we just have been doing some stuff with Lurie’s for kiddos with cancer and we’ve partnered up with them and a couple of different times to bring a little joy, but that’s really our mission. And it’s ironic, but that is our mission is we just want to bring a little joy and sunshine to somebody because even on your ickiest of days, the smallest things are so important, like when someone just sends you a text message, a card in the mail, a message on social media, or something shows up at your front, it’s that little joy that reminds you, like, I can do this, I can get through this. I’m not alone. Someone else also is thinking of me. And over the last several years of our lives, we have been witness to so much good and we wanted to do our part to pay it forward.

Jamie Freedlund: I love it so much. And I love that you’re not just crediting the big gestures or the large amounts of help, but I think it’s so true that often, it’s those really little things when you don’t expect it that really, they just brighten you and get you through. So, as we wrap up our conversation, I ask all of our guests this final question, what do you think it means to have joy in the journey?

Joy Harmon: So, I feel like joy in the journey is realizing that on the ickiest of days, there’s always something to be thankful for. It is waking up, a smile from your kiddo, a note on your refrigerator, but finding joy is seeing the little things in life.

Jamie Freedlund: Well said. Joy, it was simply a treat. I’ve been really looking forward to this conversation, and it didn’t disappoint. And I hope that everyone listening enjoys it as much as I did. So, thank you so much for your time today. I appreciate it.

Joy Harmon: Thank you again for having me. I appreciate it.

Jamie Freedlund: Thanks.

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