mom guilt, anxiety, and finding silver linings with Hope for Harlow founder Katie Scott
For those who may not follow you, can you tell me a little bit about you?
There’s not a whole lot to me anymore that isn’t the kids. Before I had kids, I really kind of was lost. I did hair, I always had like two jobs. I was a photographer for a little bit, too. I kind of hung out with friends and just never really had any passion in life, I guess you could say. Hair was probably my most passionate thing. And then when I had kids, that’s when my life really started.
You first got pregnant with Harlow, and they let you know during the pregnancy that there were complications. Can you tell me a little bit of Harlow’s story?
We went in for our twenty-week scan, which everyone gets when they are pregnant. It’s like an anatomy scan and they check everything on the baby from head to toe. That’s usually when they find out the sex of the baby. We had done this Mommy’s First Peek or something like that, and we found out that she was going to be a girl early. We went in not expecting anything whatsoever out of this scan. We thought it was just going to be like a regular ultrasound. I’m an energy person, and halfway through the energy in the room just shifted. Nothing happened, the ultrasound tech didn’t say anything, but something happened and the energy just shifted. She finished up and she was like, “Well, if you don’t hear from us in three days, then just continue with your birth plan.” Three days was the marker. I was like, “Okay.” So, three days went by and I didn’t hear from them, so I thought, “Sweet, I’m in the clear.” And on the third day, I heard from them. They called me when I was at work, and that call was the most… I would never wish that call upon anyone. I remember it vividly, she called and said, “There’s an issue with your baby. We need you to come in.” And I was like, “Okay, I’ll come in right now,” and she said, “Oh, no you have to wait five days because that’s our earliest appointment.” I’m like, “Are you kidding me? You guys called me to tell me there’s something wrong with my kid, and now I have to wait five days with that information? How could you guys be so heartless?” It was devastating. For those five days, I didn’t leave the house. I was a mess.
It’s just so wrong. And you would think they would push you up. It’s insane to me. Throughout your pregnancy, and even after that, you’ve kind of had doctors telling you one thing, and you have to tune it out in a way because what they say isn’t necessarily God’s law. With Harlow, oftentimes they’ve been so wrong.
Exactly. Like with Harlow, that appointment that I went to five days later, they assumed that we were going to abort. They didn’t even make enough time in our appointment for us to continue the pregnancy. They assumed that they were going to set up an appointment to abort. So when they were like, “Okay, this is the next step,” and I said, “We’re not aborting. We don’t believe in that. And even if that was what we needed to do for whatever medical reason, I’m not going to have you guys get me to do it. Like, you’re not going to make the decision for me.” So when they found out that when we were like, “No, we’re going to keep going,” they ended up having to move things around so that they could have us see the high-risk doctor and that high-risk doctor was the whole reason that Harlow is here today. That high-risk doctor was amazing. Like what you were saying with doctors, it’s hard because I get crap all the time on social media. All the time, people say that I’m talking crap on doctors and this and that. And I’m not talking crap on doctors, but I see doctors more often than the normal person. We see more possible bad doctors than we do good doctors. Just like, everyone sees their doctor twice a year or whatever, and their doctor is fine and they don’t have any complaints. But I see four or five doctors every other month, and there’s bound to be one that’s not the best, you know? I try to explain that to people. I don’t have anything against doctors.
The doctors that have saved Harlow’s life time and time again, I love them. But I also have people telling me I should have gotten rid of my kid. You have to take it with a grain of salt.
Of course, especially now as Harlow grows. With the average person, it’s maybe sensitive for me to say in today’s climate, but if someone were to diagnose you with a cold instead of the flu, that’s not necessarily life or death for the average person. But whoever talks to Harlow, needs to be as attentive to detail as humanly possible.
Absolutely.
You’ve mentioned before that you don’t Google and try to not fixate too much on the diagnosis, but for the people who may not know, can you tell me what Harlow was diagnosed with?
Yeah. Originally, the scans showed that she had something called hydrocephalus, which she does in fact have, but it actually benefits her. I’ll explain that for you. When she was born, she wasn’t breathing, so they ran all these tests and they found that she didn’t just have hydrocephalus, and I don’t say “just have” like it’s something little because it is a serious medical condition, but I really would like it if it was just hydrocephalus, that would have been a lot easier. Hydrocephalus is extra fluid on the brain, and in Harlow’s case, it actually benefits her because it’s cushioning her brain, because she also has microcephaly, which is a smaller than normal brain, like it stopped developing. So, she has lissencephaly, which is basically a smooth brain. You know how we all have ridges in our brains, and they look all weird? Well, her’s looks smooth. And I always joke around and say it looks like that one fish from the bottom of the sea, but it seriously does because it’s so smooth! It doesn’t have any ridges or anything like that. She’s missing the corpus callosum, which is the part that connects both sides of the brain. She also has optic nerve hypoplasia, which is why she’s blind; the optic nerve is underdeveloped. She has cerebral palsy and something called high-tone plasticity; basically, she’s not in control of her muscles. If you ever see videos of her and she is really tense, that’s why. Then, she has epilepsy. So, she has kind of a bit.
Like you have said, you are aware of what she has, but you don’t live on Google. You go off of energy and live in the moment. That’s how you handle the unknowns and things you can’t control, but you’re so open with everyone about anxiety – how do you find the ability to open up and share her story with everyone, especially when people can be so mean?
It’s tough, that’s for sure. I’m literally just a normal person. I’m nothing special or anything. In the very beginning, I started sharing Harlow’s journey because I had such a hard time repeating myself to family members and friends because we were in the NICU for so long and with doctors all the time. I would constantly have to call and text and send the same thing over and over again. It was hard on me because I was tired of talking about all the bad things that were happening. I finally just decided, well, it’s just my Instagram with my friends and my family, so I just started sharing it. People kind of started telling each other and following and new people would ask, “How’s Harlow?” and it grew into this thing. I set out, originally, just to share her journey just to give everyone updates on Harlow. Once everyone started finding out about us, we did an interview with Babble and they did a story on us about Harlow’s shop and what it all was, because I opened the shop to pay for her medical bills. We got a little more traction there, and that’s when I started getting some mean people. I was really honest about everything because it was my Instagram, so I could say whatever the heck I want, you know? And everyone who was on my Instagram in the very beginning knows me and knows that I have serious issues with anxiety, so I wasn’t scared to talk about it at first. I started getting the rude people, and I backed off for a little bit and I made it just strictly Harlow, and then I had someone write me and tell me that they were struggling with anxiety and had actually lost their baby, and that one of my videos that I did really helped her, and she felt like she clicked on it at the right time. It was a ‘What are the odds?’ kind of thing.
That just warmed my soul because it was something that I had no intention of doing for someone, that actually did something for someone. It helped them, and that was when I finally realized, “Okay, screw the haters. If someone wants to be mean to me, by all means, there’s nothing you could actually say to me that is worse than what I’ve heard from a doctor, so I’m going to share all of it.”
That was where I kind of got the strength from, because I would start getting messages from people. I had someone tell me that they didn’t abort their child because of Harlow. They were going through something similar and they saw how Harlow turned out and how she is, and they’re perfectly content with having a child of special needs.
What the doctors say to you is traumatizing and terrifying and they make it sound like it’s the worst possible thing that is ever going to happen to you when, come to find out, Harlow is the best thing that has ever happened to me. I just realized that it can do so much more good to share the truth, even if the truth isn’t always what people want to hear, and in the long run, it’s paid off ten-fold.
The way that you talk about anxiety is something even I personally relate to, you know?
I think it’s so frustrating because there’s such a stigma connected with anxiety and people are so scared to talk about it, and why? Why is it weird? Why is anxiety weird? I guarantee others have anxiety just as much as I have anxiety, and I’m just talking about it. It’s frustrating because people are scared to admit, “Hey, I don’t feel right right now.” Like, that’s weird.
It needs to change. Because like you said, probably everyone has it in one way or another.
For sure. Absolutely.
Something I want to touch on is the fact that you’re not just Harlow’s mom; you’re her advocate, too. You have to deal with insurance, doctors who don’t get it, doctors who don’t approve super necessary procedures… It’s already more than words can describe as a mom, but what is it like having that role of an advocate as well?
So, religion or not, I fully believe in a higher power. And I say that to start this because of how Harlow started. My anxiety and my depression and my post-partum - all of that - was horrible. I can’t even put a word to how bad it was after I had Harlow. I used to sit outside the NICU and just cry because every time I would go in there and see her, I would throw up. And it was devastating. It’s like, “Are you kidding me? Like, I can’t even go see my own kid?” And I couldn’t control it. I had no control over it. So Bobby, my husband, he did the skin-to-skin. He did the NICU. He would set his alarm for every four hours and he would go down to the hospital and make sure that she was getting fed through the bottle, not through the nasal one. He really stepped it up, and I felt like complete crap because I couldn’t be there the way he was there. I was still there; I just couldn’t be in the room for the first like, two weeks, and then I started to kind of get a grip. But the reason I say that is because now I am able to advocate harder for Harlow because although I adore Harlow and I love her and everything, she just has this bond with Bobby that she doesn’t have with me. And in a weird way, it’s good. Because when she needs to go to the hospital, that’s my job. I’m the one that stays at the hospital with her. I’m the one that fights for her. I’m the one that puts my foot down. But when she needs the little cuddle sesh, the little moments where everything is just quiet, that’s Bobby. And I cuddle her, too, but we have different roles in her life and from the very beginning, that was how it started.
And it wasn’t us who chose them. She chose how this was going to go.
When it came to doctors and everything like that, it was really hard in the very beginning because I grew up having a family doctor. My whole family went to this one doctor our whole life; he was a really cool guy. When I started dating Bobby and got married, we moved over to Kaiser. Well, I didn’t know there was another type of doctor. Like, I thought it was all your primary doctor. So, when I made a doctor’s appointment and it was like, some random doctor that I go see, I was really confused by the whole process. I had always had the utmost respect for doctors growing up, so when I got into the world of Kaiser – which is a great system, I have nothing against it; I have things against things that happen – I was super confused and when the doctors would come in, they would act all high and mighty and I thought it was so weird. And I wouldn’t say anything. I was just scared to say anything because I had respected my doctor for years! So, when I finally got into this world, I realized, “Okay, no, I’m an adult now. I’m Harlow’s mom now, and I need to actually say things. I can’t just trust everything that they’re saying.”
That was the turning point for me: I needed to realize that I have to stand up for my daughter because she can’t stand up for herself.
Wow. Throughout this journey and beyond, a major source of strength for you is your faith, especially the role that your dad plays in it, too.
Yes, huge. It goes back to the idea that everything happens for a reason. As much as I don’t want my dad to be dead, I feel like how he died and how things went the way they went was so that I could be Harlow’s mom. Because he was driving to work and he had a stroke, and he died. And that was it. There was no tomorrow; there was no coming back from that. It made me live my life like that. With Harlow, I don’t look into her future because I don’t know what’s going to happen. I look into the here and the now and I go through what we have going on now, and then I’ll worry about the other stuff later, because there’s no point in worrying about it because, like my dad, you could just be driving to work, have a stroke, and die. It sounds very morbid and insensitive, but I try to humble myself on that thought just so that I keep myself in the moment.
Oh my gosh, yeah. That helps ground me, too, when you put it like that. It really goes to show that perspective is everything. And with Harlow, we’ve touched on Harlow’s diagnosis and some of the struggles she has faced, but she’s still a person. Without trying to minimize what she has, she is also so much more than her diagnoses. What is something you want people to know about Harlow?
Harlow is the definition of a pure soul. I just absolutely love the fact that she does not know hate. She does not know mean. She is just pure. She doesn’t have a bad bone in her body. I know that nature versus nurture and all of that can come into play, but with Harlow, it’s different and she is never going to know a lot of things that we all do, but in the smallest silver lining - because I always try to find silver linings in everything - I am so grateful that she will never know negative, evil things. She is just so pure and always so happy.
She doesn’t cry, for crying out loud! That’s weird! She should cry, but she doesn’t. She has cried four times in her life, and all four times it has been absolutely devastating, because we’re like, “What the heck is going on? You don’t cry!” But the energy she gives off is just so warm. That’s what I think I want everyone to take from Harlow, is that she’s so pure.
I also have to mention your husband and your son, because you are a full family unit, no matter what. What does family mean to you?
I was adopted, and I was adopted into the best family I could have been adopted into - amazing parents, awesome sister. But I was always different. I was always just a little bit different. I didn’t fit in because I was adopted, and it’s okay. But I didn’t understand that until I got older. So, when you’re younger, you kind of have this, like, slightly like an abandonment issue, but not an abandonment issue. It’s weird. You just feel like something’s missing. So, I kept telling my mom that one day when I have kids, that feeling is going to go away. And she was like, “What do you mean?” And I would have to say it without offending her, obviously, and I was just like, “I just feel like I need my own family. You guys are my own family, but I need to make my own family.” And it was so hard to explain this to her without it being offensive. Fast-forward, I had a couple of really rough relationships and it had gotten to the point where I was like, “I don’t want to get married and have kids. If this is what it’s like, I don’t want to do this.” I kind of just went on my own, and was living life. Me and Bobby had been really close since we were about fifteen, sixteen years old. He actually got hurt and I went to go visit him and at that moment, I saw the vulnerable side of him, and it was like the rest is history. I all of a sudden fell in love with him. He wasn’t just my friend anymore; there was more to it. It’s weird because I couldn’t do this life with anybody else. He is the cookie-cutter perfect husband for this life. He drives me nuts, don’t get me wrong, but there have been so many times where I’m like, “I can’t do this. I can’t do this. I can’t, I can’t.” And Bobby’s like, “It’s okay, I got it.” And he’s just got it. There’s times that he gets overwhelmed and I take care of it, and the two of us with our two kids are just one perfect puzzle piece together. I know that sounds super cliché, but I just, I couldn’t do this life with anyone else.
Aw, you deserve it. I could hear you smiling, ha. I hope you know that, no matter how cookie-cutter it might feel.
Thanks. I know, and it’s weird. I never thought I would ever in a million years be like, “I love my life.” I mean, I love my life. Everyone loves their life. But I never thought I would just… to my soul, you know? I never thought I’d get that lucky.
Oh, no. You deserve that. You are married, you have two kids, and even with everything going on, you’ve still managed two start businesses. You have Hope for Harlow, and James and Jean. You mentioned starting it to pay medical bills. How did they start, and do you balance it all?
Originally, I commend the people who bought the shirts from me in the beginning because they were… not cute. I had no idea what I was doing but I am a very prideful person. They had a GoFundMe going for us, and I could not take people’s money without giving something back. Even if it’s an ugly shirt, I still had to give something back. That was how it got started. I just started making these shirts that said “Hope for Harlow” on them and I would give them to everyone who donated. And then people started really wanting to get Hope for Harlow shirts and it started becoming a thing. I thought, “I might as well start taking advantage of this right now while I can, because I can’t go back to work. I can’t go back to doing hair and I can’t work a normal job anymore.” I didn’t know anything about state help or anything like that, so it was purely just Bobby working. I just started hustling and trying to figure out things and doing as much as I could to try and pay off the medical bills because Harlow was in and out of the emergency room eleven times in her first year, and each time you go to the emergency room, it's $500.
That’s insane.
And that’s not including the actual stay itself and all the other fun stuff that goes along with it. So, it got overwhelming and we ended up moving back to my mom’s house and doing everything we could to stay afloat. Thank God the business took off. I know God did that; I know He did because there is no possible way for it to have done what it did, you know? And then I wanted to start giving back, because the reason we got through it was because everyone was giving to us. So, I started doing give-backs and pay-it-forwards and anything I could raise money to help people, or toys for kids that have cancer… just anything I could do to give back, I wanted to do it with the platform that I had gained, and that’s where James and Jean came along, because my girlfriend had lost her son to a cord accident like two days before he was supposed to be born. It was absolutely devastating. I told her, “This is your story. Harlow is my story; this is going to be your story. This is what is going to mold you into the person that you will become, so let’s do something with it.” We wanted to make bracelets. You know when people go on runs and they get shirts that are not that cute, and they say “Run of 2019?
Yeah!
I wanted something that would symbolize the ribbon color. Like, lissencephaly is purple. And I don’t like purple; I’m not a big purple fan. So, wearing a purple shirt to rep lissencephaly was not really my thing, but I would totally wear jewelry for it. But what purple jewelry is cute, you know? So we wanted to make something that you could kind of wear low-key and just know that you’re still repping it for whoever it is that you are trying to rep it for, and still be fashionably safe. We still wanted to pay it forward as well. That was how James and Jean came along. James was her son Emery’s middle name, and Jean is Harlow’s middle name. And any opportunity we have to give – we give a lot of free bracelets away, although we don’t tell people because we don’t need the praise or anything like that. But anytime we hear of someone losing a baby, if someone messages us, we don’t question it; we send a bracelet with angel wings on it… just something to make that person for two little seconds feel better, you know? That’s how that all happened. As for balance, I question that all the time. I have no idea how I do it, but I know my mom is how I do the majority of what I do because she is able to help me with the kids. And Bobby’s mom, I gotta give her credit, too.
Everything you do is so cute and creative, and the clothes are so comfy, too. All of it. But I can’t talk to you without pointing out your sense of humor, because it’s great. Let me tell you, wear that ring, show off that ring every second you can! Also, I don’t know anyone who is as happy to receive water as you. Water is a big deal.
Seriously though! I just want my water. And it’s so unfortunate that some people don’t get my sense of humor and everyone is like, “You don’t need to explain yourself,” and I’m like, “No, I do because you guys need to know that I’m being sarcastic.”
I live in what technically should be a really dark world. My life should be really miserable… if I let it. But I’m not going to, and I’ve got to find silver linings in things, and I’ve got to find humor in things. I try to make light of a shitty situation that not one single person can change. It’s like, “What do you want me to do, sit in the corner and cry about it? Or do you want me to do the best I can, and put a smile on my face and keep going?” I try my hardest to just kind of make people laugh.
For the most part, everyone knows that I’m joking when it comes to stuff. I usually have to say I’m joking, like with the ring. Normally I would never put someone on blast like that, but I had to, because it was just so outrageous that someone would think I was trying to show off my ring as much as they were saying, so I’m gonna be petty about this and I’m going to show everyone my ring now. And now it’s funny because I’ll get messages when I’m doing orders, because you can leave a little comment to say something on them, and people will be like, “Show off that ring, girl!” And I’m like, “Yes, someone understood it!” I’ve learned that there’s like 10% of people that follow me that really just like to keyboard-warrior and talk shit, and the rest is just, everyone’s amazing.
it’s wild. So, something I want to make note of is that you did hair. You do the creative behind your businesses – clothes and bracelets. And you also do custom jackets, which are incredible. How important is it for you to have that creative outlet and that sense of self, or normalcy, with everything going on?
Oh, it’s the most important thing. I’ve had people reach out to me that are just starting their journey with a special needs child, and I’ll tell them, “At first you are going to feel really selfish when you take moments for yourself, because you’re going to be like, ‘No, I need to do this. I need to be there for my kid. This, this, and this,’ but after a while, you realize that you absolutely have to take time for yourself or you will go insane.” My biggest struggle during Harlow’s first year was that I did everything. I wanted to do everything. Everything was for me to do – her therapies, her doctor’s appointments, all of it. I took it all on, and I wouldn’t let anyone help me. And finally, I burned myself out bad, and I had a big mental breakdown. But then I finally allowed my mom to start helping me with doctor’s appointments and therapy.
I realized, “Okay, it doesn’t make me a bad mom. It makes me a good mom because now I’m more sane and able to be there and be present when I’m really needed.”
It’s hard, and you get mom guilt. My thing is, I don’t really buy a whole lot for myself, but I love T.J. Maxx and Marshall’s. I love just wandering through there; it’s like a scavenger hunt. And so Bobby always jokes around anytime I’m getting stressed out, like, “Don’t you need a Target trip or a T.J. Maxx trip or something like that?” And nine times out of ten I don’t buy anything, or if I do, it’s usually for the kids.
But it’s just that moment where you get out of your element and you kind of become a human again and you’re not being relied on to keep someone alive. You don’t feel the stress and responsibility for like an hour, and that really actually means a lot, and I wish that didn’t have a stigma against it, too, like mom guilt. I wish moms didn’t ever feel guilty for going and running an errand.
No matter what it is – a day, a weekend – being a mom is such a twenty-four-hour mental job, that any break you can get, you need and deserve it.
Exactly.
And as a mom, no two days are alike, but what does a day in your life look like?
I wake up, get the kids downstairs. The worst part of the morning is their diapers. Both of them just have bladders for days; they pee so much at night! And we’ve adjusted their feeding schedules so they don’t eat as much at night but it doesn’t matter – their diapers are epic. So I do diapers, and it’s just been a little bit different ever since Brixton was born, but we do Harlow’s first because she has to get medications for her seizures and all of that stuff. We do her medicine and G-tube feeds. I say we because my mom 1000% helps me. Like, I don’t know how people do it without help; it blows my mind. We put Brixton in his high-chair and give him something to munch on in the meantime. That’s how the morning gets going. Then once everyone is settled down, we put a shed in my backyard, and that’s like my office. I go out there for a couple hours and get work done, then I come back inside and hang out with the kids for four or five hours, give or take. It depends on nap times and all that fun stuff. Then, Bobby usually gets home and when Bobby usually gets home, he takes over for the kids and I cook dinner. We just hang out, and then the kids go to bed.
And no matter what life journey someone is on, what is something everyone should know how to do?
I don’t think everyone should know how to do something, necessarily, but I think everyone should know how to have empathy.
Yes. Speaking of, in a somewhat recent Instagram post you did, you wrote an open letter to your younger self on what life would be like. Whether it’s other moms in a similar situation as you, young girls that look up to you, or anyone fighting their own personal battles, is there anyone else you would give someone?
Honestly, I would just tell them to hold on.
It might feel like the entire world is crumbling around you, but I promise you, it won’t always crumble.
When I lost my dad, I was like, “This is it. This is the worst that something could be.” And then I had Harlow. And I was like, “No, this is the worst possible feeling I could ever feel.” And then I had Brixton, and I had all the panic attacks and all that drama that I kept going through all last year, and I was like, “This is the lowest it is.”
So, no matter what you think is the worst, there’s always something that’s going to kick your ass later on down the road. Just hold on, get through whatever moment that is right then and there, and enjoy the other moments, because there are good moments with the bad.
And like anyone who ever writes me and they say that their kid has this or that, because I get a lot of people who ask me if I found out when I was pregnant; that’s like the number one thing, and I always say, “Yeah, I did.” And they always say, “Well, what made you make the decision?”
And there wasn’t a decision to be made. I know that I got given this little girl for a reason, because our plan was that if she didn’t make it through, we were going to donate her organs, so at least her life meant something. To me, no matter what, there was going to be a purpose for everything that we went through. Whether Harlow was going to make it through birth, or whatever it was, she was going to mean something. That’s what I would tell younger people, is to just trust the process. It’s scary, but just trust it.
I agree. It’s funny how it’s so simple when you think about it, but can be so difficult in the moments. But what you do is, truly, your family gives hope to so many other people. And because you run Hope for Harlow, I have to ask, what does hope mean to you?
The irony of that! I didn’t come up with the name, actually. I have to give credit to my sister-in-law. She surprised us all right after Harlow was born with shirts at our family photoshoot for Christmas cards. She had shirts made for all of us, and I was just like, “Oh my God this is so cute! Hope for Harlow, it’s so cute.” And that was how the name Hope for Harlow started, was because of her. I always, when it comes to the actual word ‘hope,’ I always think about that, too. Because you know how when you say a word so many times that it doesn’t have meaning anymore? Well when it comes to ‘hope,’ that’s something that is always going to have more of a feeling in my soul, than the word itself. One of my friends was like, “Why don’t you get hope tattooed on you?” And I was like, “Because it doesn’t work like that.” I don’t know how to explain it.
Hope is a feeling more than it is anything else.
You can follow Katie and her family on Instagram here.
All photos courtesy of Katie Scott.