Ep. 82: Kim's Story | Hard-Earned Awe, Mothering a Glass Doll, and a Brand-New Marriage Put to the Test

 

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Summary

When Kim’s picture-perfect pregnancy ended with a textbook delivery, she had no reason to expect that her newborn daughter would have a broken arm. After further imaging, they found she had fractured a rib while still in utero. This led to the suspected diagnosis of OI—a rare syndrome that results in extremely breakable bones. After they were discharged, little Julianne broke just about every limb. Kim and her husband were reeling with the unexpected medical journey they were on.

In this episode, Kim shares what it was like to endure the learning curve during the first several months of her daughter’s life. She also talks about the awesome things that have come because of her daughter’s diagnosis, and the ways that her brand-new marriage was affected.

Mom holding little girl baby for 1st birthday with a gold #1 balloon in the background
little girl sitting on green couch
mom, dad, and little girl sitting in the grass outside smiling
Mom in blue dress holder little girl in white dress with a white bow on her head standing on a dock with water in the background
little girl with red dress and red bow on her head sitting on a white couch smiling and holding a little toy dog
Dad wearing white shirt and blue pants with mom wearing a gold dress and holding baby girl in a white dress with a gold bow in her hair
Dad wearing white shirt and blue pants with mom wearing a gold dress who is kissing baby girl in a white dress with a gold bow in her hair
Episode Transcript

Kim Arnold  0:00 

We had a couple moments where we just looked at each other, we laughed, and we're like, "Did you ever think that we would be sitting here, splinting our infant child's leg?" It's just wild to think about. Yeah, we were learning all this stuff all at once and it was a lot.

 

Madeline Cheney  0:23 

Hello, you're listening to The Rare Life. I'm your host, Madeline Cheney. Today I have episode 82 with Kim Arnold. Kim is a mom to one-and-a-half-year old Julianne, who was born with a rare syndrome called osteogenesis imperfecta, also known as brittle bones disease. Because of this syndrome, Julianne's bones fracture incredibly easily and often. In this episode, Kim shares what it was like to have a picture perfect pregnancy, only to find out hours after delivering Julianne, that she had fractured a rib and an arm, which led to the discovery of a very rare and intimidating diagnosis. We really dive into what the first days were like as well as the first handful of months after discharge. Spoiler alert, it was really hard. We also discuss the beautiful impact that Julianne's medical complications have had on their family's view of the simple things in life and the ways that her marriage was also impacted. I had so much fun recording with Kim.  We definitely hit it off, and I hope that that energy is contagious. You're gonna love Kim. Kim, her husband, Brian, and little Julianne live in Dallas, Texas. She works in staffing and sales, and is a lover of coffee and baking. Let's dive in.

 

Madeline Cheney  2:14 

Hi Kim, welcome to the show.

 

Kim Arnold  2:17 

Hi, thanks for having me.

 

Madeline Cheney  2:19 

You're so welcome. I'm really excited to hear about your journey with Julianne and how she's affected you and your life. So I would love for you to start out with a very brief explanation of Julianne and a little bit about her diagnosis and just how it affects her.

 

Kim Arnold  2:39 

So Julianne is a year-and-a-half old now. She's just the sweetest, happiest kid in the whole world. She was born with Osteogenesis Imperfecta, which is Brittle Bones Disease. It just means that she's really, really fragile. So she has broken a lot of bones and her days. It's affected, you know, a lot of different things, but mainly the fact that she's just a very fragile girl. She's our little glass doll.

 

Madeline Cheney  3:15 

And she's in a lot of surgeries, right? I feel like you've talked about that on Instagram and stuff.

 

Kim Arnold  3:21 

Yeah, you know, thank God for modern medicine. There are surgeries that she can get. So she's had what's called a Rodding Surgery in her legs to strengthen the bone. We are actually heading for another surgery this month. She will get the same surgery in her arms.

 

Madeline Cheney  3:37 

Okay. Yeah, thank God for modern medicine. I agree with that so wholeheartedly, and great doctors, and people who have paved the way for them. Yeah, that's awesome. Okay, so I would love to hear your story, so let's start with when you first found out, or knew, that Julianne had any kind of medical issues. I know sometimes we don't have like an exact diagnosis right at first, but your before and after, I guess. So let's start with that moment.

 

Kim Arnold  4:14 

So, I mean, we had a perfect pregnancy, like there were never any issues and everything was right on track. So we had no idea that anything, I guess, was going on. And it wasn't until the day that she was born. At first, everything was great. They handed her to me, etc. But then they immediately took her for the newborn check thing that they do. So they wheeled us to our room and they said, "We're just going to check her out and then we'll bring her right to you. You guys will meet up in your room." When that happened, instead of bringing her back, we had a NICU doctor come see us. He said Julianne's arm is broken. And he said, you know, this could be totally normal. Some kids break their clavicle, etc., so it could be fine but we do need to keep her in the NICU to see what happened and make sure that she's okay. So obviously, we were nervous and freaking out a little bit, but we had a lot of hope that it was nothing. It wasn't until they brought us to the NICU to talk to us that the NICU doctor said, we did an X-ray on her arm, and in that we did an X-ray on her chest and saw that she actually has a broken and healed rib fracture, which means that she had broken her rib while she was in utero, and it had healed on its own while she was still inside of me. We didn't know that that had happened, obviously because it's so small, they would never have seen that on an ultrasound or anything like that. After that he said, you know, that's a really significant finding that leads us to believe that this could be something called Osteogenesis Imperfecta, which is Brittle Bones Disease. That was the first time that we had ever heard those words in our lives. And the NICU doctor was so kind, he gave us all this research to look through, he talked us through kind of what that means, what it could mean, what it couldn't mean. That's the moment that we, I guess, found out that something had happened.

 

Madeline Cheney  6:44 

I'm just picturing this really typical pregnancy and really typical birth and then to be like, "Oh, your newborns arm is broken," would just be so out of left field. What do you mean, broke a bone? I've heard, I've heard of a clavicle breaking too but I don't think that that would've even been on your radar for her to break a bone in birth. Especially if there weren't any, huge issues happening while you were giving birth. And then to picture her breaking a rib while she was inside of you. How did that feel to know that that had happened while you were pregnant with her and you had no idea?

 

Kim Arnold  7:21 

I mean, probably as awful as you think it was. Just because that's the place where they're supposed to be safe. You're carrying them around and, as a mom, you develop this really special bond with your belly and you're talking to your belly and all this stuff. So to find out that she had actually had some sort of pain while she was in there, and I didn't know at the time. Yeah, I mean, it was hard. Like you said, to find out that she'd broken her arm, and she's like this tiny, tiny, frail, little thing and she was only like seven pounds, was just crazy. I mean, I just didn't know what to think.

 

Madeline Cheney  8:03 

Yeah, I think there's something about things like that happening. When you're not aware of it as a parent, especially as a mom, how would I not know this? I should have known, even though obviously no one expected you to know that that happened, right? But I imagine that it does feel a little unsettling. For me with Kimball, where, I can't even remember how far along they are, but when they're like, "Oh, now the baby can hear you, and they have light perception in there so talk to your belly," and, you know, I was expecting him to know my voice and everything. And then for him to be born and then to find out that he couldn't hear us or see was like, "Oh, how did I, how do I not know that?" Well obviously there's no way I could have known that, but I don't know, I think there's something unsettling about not knowing something like that about your baby. Especially when they're inside of you, like, it feels so intimate.

 

Kim Arnold  9:04 

Absolutely., I had all the emotions and all the thoughts when that happened. It was, like you said, that's supposed to be their safe place. And what was crazy was that when I was pregnant, I actually had a lot of anxiety around my pregnancy for no reason. Everything was going well and my doctors kept telling me everything was perfect. My husband was always like, everything's fine, everything's going great. But I had some weird anxiety around it. I think it was just because it was my first pregnancy, but all in all, you know, to find that out afterward, it just was a lot for me to take in.

 

Madeline Cheney  9:40 

Yeah, yeah. That's really interesting. It does make me wonder, like, could that have been motherly intuition? Like, something's up and I don't know what, and there's nothing showing that anything's wrong so it must just be nothing. Or, you know, first time mom stuff. Which it could have been a combo of, but that's really interesting.

 

Kim Arnold  9:59 

Yeah, I remember being super nervous throughout my whole pregnancy, but I didn't have any reason to. It was little bits here and there where I would freak out. Like, "what if something goes wrong," but all in all I was sure that our pregnancy was perfect and, you know, everything was going well. I didn't have any reason to worry, it's just random mom anxiety I think.

 

Madeline Cheney  10:22 

So, kind of fast forwarding to the moment when you found out about this diagnosis, about her fractured rib and her broken arm. You mentioned that you had all the feelings, that was really hard. What was going on for you the following days? After finding that out? How did you handle that? What did that look like for you?

 

Kim Arnold  10:44 

Honestly, it was really tough because she was in the NICU for three or four days before she was moved to the PICU. The way our hospital is structured, the postpartum unit, where we were, was on the other side of the building where the NICU was. I was determined to breastfeed and still spend that time with her, so I was waking up every three hours. I was exhausted, you know, my husband would walk me to the other side of the building to the NICU to try and breastfeed her, to sit with her, to still have that comfort time. But it was really, really tough because in between those moments, obviously, I would come back to the room, I would cry, I would Google, which, you should never Google things when you're going through a hard time. Never google anything your doctor tells you, it's just the worst.

 

Madeline Cheney  11:50 

It's hard, though. It's hard not to, like I can imagine being in the room and be like, "What do I do with this information." And trying to project what your life might be like, I can see why you did it. But I can also see why that was hard.

 

Kim Arnold  12:00 

Yes, like googling everything. And, you know, it's hard. But I was on the internet, I was researching, I was reading through the research that our doctor had given us, I was talking to family members. Then I was trying to get, like, 10 minutes of sleep in between feedings, and then walking again from one side of the hospital to the other. What was really tough was, there was one nurse the very first night when we had found out that Osteogenesis Imperfecta was what we were looking at as a potential diagnosis. She actually told me that I couldn't hold her because she was too fragile and because she was still in pain from her arm. She wouldn't let me hold her for that whole shift that she was on. That was really, really tough for me because at that point I still had this hope that she's fine and she'll heal from her arm, and maybe it'll be fine. But the nurse looking at me and telling me, she's too fragile for you to hold her. That just broke my heart and it made me feel like this is a million times more real than I thought it was, or that I was trying to convince myself that it was. I would say that first, those first few days were really hard, not having her near me, having to travel back and forth. And just questioning what is the rest of her life going to look like? And what does that mean for us? Where do we go from here? Because we had no idea.

 

Madeline Cheney  13:38 

I can imagine when that nurse said that, reality really was hitting, she's so fragile you couldn't hold her. Especially when you're making all the efforts to try to have as normal as possible of a bonding experience with her, like walking across the hospital and waking up and nursing her. And then to find out that you can't even hold your baby. I'm not gonna lie, like, I don't know if you felt this when listening to my solo episodes, but I talked about Kimball when he was first born and how I couldn't hold him either because he was too fragile. So I'm like, Oh my gosh, that is bringing me back to that. That's such a tough situation for a parent to be like, "You can't hold your baby because you might hurt them by holding them." That is just so bizarre and hurtful and, you know, all the things.

 

Kim Arnold  14:31 

I will say, our day nurse was amazing. When he came in, he was like, oh my gosh, no, I want you to hold your baby. You need to hold your baby. You need to be close to her. She needs you right now. That's what's going to be best for her, is being with you and feeling that you're here for her. He was very, very kind to help us just very gently pass her into my arms and position her just the right way so that we weren't putting any undue pressure on any of her legs. That was huge, but yeah it was really tough, those first few days.

 

Madeline Cheney  15:10 

Oh my gosh, that nurse, yay! I bet that was so like the opposite of what happened with the other nurse. He negated that feeling of "I can't hold her," to be like, "Oh, I'm actually very needed as her mom, she needs me." Instead of "You're going to hurt her, don't hold her."

 

Kim Arnold  15:30 

To this day I still like remember his face. I don't think I'll ever forget that face because that was my little glimmer of hope when he said, "No, she needs you right now. You're going to do this." I was like, "Thank you."

 

Madeline Cheney  15:44 

Yeah, you need to feel needed, especially within the NICU.

 

Kim Arnold  15:49 

Absolutely. Those days after we left the NICU and the PICU, finally. But that month to two months afterwards were probably the hardest part of her entire journey. Like those early days were tough, obviously, just kind of processing everything but, you probably know this, genetic testing results don't come back for like, six weeks. So the next two months really felt like we were just sitting in limbo, we didn't even know if Osteogenesis Imperfecta was really her diagnosis. We didn't know if there was something additional going on, but we were still, I think, just confused. So she came home with a broken arm, and obviously that leg fracture that had healed. As soon as we got home, probably like after a couple days, we realized that her leg was broken. What had happened was that when she was in the hospital, there was a nurse who came in, who was covering for one of the other nurses, and didn't realize that she was fragile, and had lifted her up by her legs to change her diaper. And I knew that she started crying in that moment and she was fussy thereafter. Over the next couple days, I realized she's not moving her leg. Yeah, so she had broken her leg. So we went to the ER and, it was the whole thing. The week after that, my husband had picked her up just to hold her up to his chest, and she broke her other arm. So that was another ER trip. The week after that, the small splint that was on her tibia, which was the leg that the nurse had broken, I think she had moved her leg and the weight of it was just too heavy and it broke her femur. And so, on and on like that, I mean, I could keep going. But for those first two months, it was every single week, she's fracturing another limb, to the point where after those two months, she was basically in a full body cast, she was just completely wrapped up and healing in all her limbs. So, obviously, all hope that we had that it wasn't Brittle Bones Disease was out the window. We got the official diagnosis at the end of that really long stretch of fractures. So that was really hard and we were completely new,  so we went to "What do we do from here? How long does it take for everything to fracture?" And at that point, we had gotten almost terrified to hold her in our bare arms. For a while, we would hold her on pillows or blankets that we would wrap around her to make sure that she was as safe as possible. So it's just a lot of a learning curve and just a lot of emotions during that time.

 

Madeline Cheney  19:18 

Yeah, oh my goodness. It reminds me of that saying, I don't know if you've heard this but when you have a shy grandpa and you're like, "Here, hold the newborn!" and they're like, "Oh, I don't know, I can't do that." and you're like, "Don't worry, you won't break them." Yeah, you literally, just by holding her she was breaking. I imagine so many intense emotions over that and knowing that it was painful for her. How was that specific aspect of it, knowing the pain that she was in? What was that like for you?

 

Kim Arnold  19:51 

That is the worst part of it. I think, at the end of the day, that will always be the part that I struggle with. Knowing that she'll use a wheelchair or knowing that she's behind on developmental, whatever it may be. All that other stuff that comes with her diagnosis is just, it is just stuff but at the end of the day, the one thing that I always struggle with is the pain that she goes through. I will say she is the toughest kid, the toughest person I've ever met in my life. She will, even to this day, break something and the next day she's smiling and laughing. The last time she broke her arm, within hours she was laughing at something that dad was doing that was funny. So she has a lot of resilience. I think kids with OI tend to be very resilient, and they have to be. But yeah, that was really, really hard for me. Knowing that she's human, but just because she has OI doesn't mean that she's not still feeling every fracture that comes by.

 

Madeline Cheney  21:05 

In talking to a few other parents, and it's not the same thing but a lot of us have noticed their pain tolerance is really high, like I would be really upset. If they just fell and are bleeding, but they just jump up and keep going. Obviously there's an amount of gratitude that they're resilient but I think it also is a little heartbreaking because you're like, "Ah, that resilience has happened because you've been through way more than you should have." It's not fair that you have to be that resilient.

 

Kim Arnold  21:38 

Yeah, absolutely. And what really hurt my heart, especially during those early days was that she was so tiny. I was so upset that her introduction to the world was just fracture after fracture after fracture after fracture, and I kept wanting to tell her, "This isn't it. It's going to be okay." So yeah, it is so tough.

 

Madeline Cheney  22:07 

Yeah, totally. And I feel like her resiliency that she has, and the way you talk about how she bounces back and is happy and laughing again. I feel like she's learning that as she grows. The pain and that suffering is not all there is to life. Daddy can still make me laugh. I don't know what it is but there's something kind of heartbreaking about that resiliency, but it's also so reassuring. I know they're not here to inspire us but it is inspiring to be like, "Wow, I can be more resilient too." Has that affected you, as her mom, to watch her, her resiliency, and what she's gone through?

 

Kim Arnold  22:54 

Yes, I still struggle to this day with every fracture that she has. I've yet to see her fracture something without me at least having a good one minute of just letting the tears fall down and then picking myself back up. I'm getting better at it, I will say, but it's always hard. As moms, we worry when they're sick, we worry when they have a runny nose, we worry about these things. So it's a different level when I know that she's broken her arm or broken her leg. It's tough but I think the amazing thing is that it has made our family really resilient and very thankful, I would say. Extremely, extremely thankful, and more attentive to the moments that we have that don't include any physical pain. I remember last year on my birthday, she was six months old, was the first time that I had ever held her in my bare arms to feed her, and she fell asleep in my arms. I just remember just being so insanely thankful and thinking, I'm sure this is nothing to most moms. They hold their babies, they feed them, and they fall asleep in their arms and it's nothing but this is the most incredible thing that I've ever experienced. I feel like little things like that has taught us to realize that there are hard things that happen but those good things that often go unnoticed, we just bask in them. I try to do that every single time, like the other day I was driving and she was in my backseat, and I could see her in the little baby mirror. She was playing with her feet and just tapping, she was splint-free, everything was good. I had Starbucks and I was driving us home, and we were listening to Christmas music, and I was just so content. I remember I was like, "I need to take a second and just be thankful for this right here." So, yeah, I think her resiliency has not only taught us to be more resilient, but, further than that. I think it's appreciating all of the amazing little moments in between because those have to outweigh all of the bad or the hurtful stuff that happens. It has to, and I want her to go into life feeling that way. I want her to go into life appreciating all of that and letting all of those good moments outweigh any pain that she's gonna go through.

 

Madeline Cheney  25:53 

Oh my gosh, I love that so much. This morning, I was writing in my journal and I was thinking about this very thing, the effect that heartache, longing, and pain has on the moments that you really are longing for. Like the moment where she falls asleep after you've breastfed her, and life is just feeling really good. In your expectations of her birth, that should have happened the day or two after she was born. But because it took so much longer, and there was so much heartache in between, I just feel like that can add this really incredible depth to those experiences. It's not just, "How cute, how sweet. Let's take a picture," and moving on. It is this momentous thing that, like you say, if you choose to savor, I don't think you could have it any other way. I think it's hard to go as far as to say, "I'm glad that she fractures all her bones." I don't know that you could ever really say that, but to recognize that depth that it brings to life in those little moments that normally would just pass by and to be like, "Yeah, it's expected and life is good," but because of all the heartache and the pain and moments where it's really hard, it makes those moments really stand out. It's like the contrast between the darkness and the light.

 

Kim Arnold  27:32 

Yeah, absolutely. And like I said, it's one thing that I've learned from her and that I want her to also learn is, and I think this is just in general for humans, but everyone has their own heartache. Everyone has their own pain, and it looks different for everyone. Ours will obviously look very different than yours. But, at the end of the day, being able to really, really feel the good ones so that the hard ones don't end up defining your life and how you feel about life.

 

Madeline Cheney  28:13 

Yeah, yeah. Which is easier said than done, and maybe even different phases of life are easier to feel that way because I'm sure, at least for me in the first few months, that would have probably just been, "Right now I'm just really upset, and I just need to be upset." This would be a major part of that darkness that the light will contrast with, but right now I'm just upset. Letting those those good moments come naturally and not force it too much too. I read this quote where it was like, "Gratitude is not the Tylenol for grief." If we force it, then it can feel like you're just numbing out the pain, but those moments can truly come on their own and in their own glorious splendor of like, "Wow, this feels so good."

 

Kim Arnold  29:08 

Yeah, like you said, it's the contrast. I think it just makes those moments shine a little bit brighter and make you want to feel them a little bit deeper. So I think it's cool.

 

Madeline Cheney  29:21 

I think it's hard to really articulate but I resonate with what you're saying. I'm sure a lot of people listening right now are like," Yes, I know what you're talking about, those sweet moments, I just need to bask in this right now." So we've been talking a lot about how your life has changed and how you have changed. I would love to hear how your relationship with your husband has evolved or been affected by everything with Julianne.

 

Kim Arnold  29:57 

Yeah, well I really think that my husband was specifically chosen for me. My husband has nerves of steel, he just is not rocked. All through those two months, it was funny actually, when he came home from the NICU to pick up clothes while we were still in the hospital, those early days. My parents were at home taking care of our dogs and my mom was a wreck, she was confused and worried and was going through all the emotions. She said that it gave her a lot of comfort when my husband came home to pick up clothes. And he said, "We're great. Oh, she's fine. Oh, Julianne's gonna be fine. She's so tough, and we're great. Please don't worry about us, we're gonna be okay, we're gonna get through this." He's just that kind of person. All throughout everything that we've gone through, and like I said, Julianne was laughing after she broke her arm because Dad was doing something funny. Like, why is he doing something funny? At that moment, I'm freaking out. I'm sad or worried or I'm stressed out because I'm like, "What's breakfast?!" etc., and we have to dose the pain meds and I'm jumping to nurse mode. But my husband, he's sitting there making her laugh. That's just who he is. And he's a shoulder to cry on for me. He's always, always, always keeping it positive and keeping it light if he can. So I think it's strengthened us a lot. I will say, in those early days, it was really testing. I think any mom and any couple can attest to that, that it is tough. It's really tough to go through that situation and, my husband and I had just gotten married in May and our daughter was born that following April. So we were new to marriage, and then we were thrown in the fire. You really find out how people react to things. A lot of the times you react differently to situations, and there were definitely times where my husband's positive and light attitude frustrated me because I was like, "I'm heartbroken and I want you to be heartbroken with me." But he gets through it by looking at the bright side, and sometimes I just want to wallow. So it's tough but thankfully we worked through it and we just knew that we had to be there for our Julianne, and we wanted to be there for each other. So yeah, I think it's been good overall but it definitely was hard.

 

Madeline Cheney  33:06 

Yeah, that's so real. I love that. Like you said, we all need different things when different things are happening, and I think that's such a good example of that. He needed the lightness while you needed to really be there in that heaviness and work through that. I can see why there would be frustration with him like, "Hey dude, I need to be sad right now and I want you to be sad with me. Let's do this together, you don't even care," and then he might've felt like, "Dude, you're dragging me down. I'm trying to be light and happy. This is what I need." Yeah, I think that's so relatable. And I think recognizing, like you did, that you needed different things, can go a really long way because then you're like, "Oh, we're just different, and that's okay," but it's still really hard.

 

Kim Arnold  33:53 

Yeah, and we thankfully learned to communicate about that stuff so that we can get through it together rather than apart. It came down to, if I need a hug, I'm just gonna say "I need to cry and I need a hug." And he was like, "Okay, and I will respond in that way. And if you need me to be a little happier then do something funny and make me laugh so then we can we can do that." So, like you said, it's trying times, it's definitely hard, but thankfully we were able to kind of find a happy medium there.

 

Madeline Cheney  34:32 

Yeah, and what a steep learning curve for you. Previously, you mentioned that you got pregnant three months after you got married, but also to be thrown into pregnancy, even if it's a typical good pregnancy, that's hard. Then for Julianne to come into the world the way she did, with her diagnosis, and just learning the diagnosis, learning marriage, learning parenting for the first time. That is a lot to handle all at once.

 

Kim Arnold  35:02 

I'm not kidding, we were learning all of it, and it was overwhelming at the time because we had just gotten married. We originally were the people that are like, "We're not gonna have kids until we've had at least three years to travel the world and whatever else," like, silly stuff we thought we were gonna do. And then we immediately got pregnant with Julianne, but we were excited about it. But learning marriage, and then on top of that, learning pregnancy, is already tough. Then, right after that, learning we're in this medical parenting world now, was a whole other layer. And we were not just learning about the diagnosis and what that means for us but, on top of that, I felt like we were in nurse training because we had to learn dosing, we had to learn how to splint an infant's leg, how to splint an arm, what materials do we need to have on hand at home for that stuff. We had a couple moments where we just looked at each other, and we laughed, and we're like, did you ever think that we would be sitting here splinting our infant child's leg? It's just wild to think about. We were learning all this stuff all at once, and that's a lot.

 

Madeline Cheney  36:27 

Yeah. I think that learning curve of becoming nurses and parents really is a whole different type of parenting. You can look at your friends or your peers, or even how you imagined parenthood to be, and just be like, "This is so different." And yet, it's also exactly the same. The relationship with your child, how much you love them, and a lot of the things that go along with like typical parenting, you get all of it. It's a lot.

 

Kim Arnold  37:00 

Yeah. We still had the typical parenting stuff because my husband had to go back to work shortly after she was born. So, on top of everything, the ER visits and all the other stuff that we were handling, my husband was still going to work in the morning. We were taking turns at night, feeding her and getting her bottles and stuff. So yeah, it was definitely a lot.

 

Madeline Cheney  37:28 

Yeah. Like a different flavor of the parenting stuff you would have to do anyway because she still needs food and diaper changes and all that. But also, don't break her leg while you're changing her diaper or feeding her.

 

Madeline Cheney  37:46 

Well, I would love to end with what you wish you could have told yourself, the day at the NICU when you found out that she probably had this genetic syndrome.

 

Kim Arnold  38:02 

I think I would have told myself what every mom would probably tell themselves, that it's gonna be okay. I would hug myself and tell myself that it's gonna be okay. "It's gonna be hard, but just wait until you really get to know her," I think is one huge thing. Now that I'm starting to see Julianne's personality and becoming this little person that has ideas, thoughts, and an attitude. And I'm sure this is for everyone. It makes it just a tiny bit easier. Just a tiny bit easier. It's always gonna be hard, it's gonna be hard, but just knowing who she is, and getting to know her as Julianne, as my daughter. She's just so incredible. So incredible. There's not a doubt in my mind that she's gonna grow up to understand her worth and her value, and be strong enough to take on her OI and her diagnosis, and what that means for her life, with strength. I know it's still going to be hard, and I'll be there to walk her through that. And some of it she'll have to walk through on her own but, I've seen her spirit come through. I've seen her personality come through, and I just know that there's so much there. There's so much strength. There's so much beauty there. When you're a new mom, you just see your baby. And you're still seeing them as this little cub, but it's different when you start to get to know them. And if I could just tell my early self that, "Just wait until you get to know her." I think that I maybe would have been a little bit better.

 

Madeline Cheney  40:15 

I love that so much, that really resonates. It's beautiful. Well, thank you so much, Kim, for sharing your story and your experiences with us. It was such a great conversation.

 

Kim Arnold  40:27 

Of course, I'm happy to. Thank you guys for having me.

 

Madeline Cheney  40:30 

You can find adorable photos of Kim and her family on the website, TheRareLifePodcast.com. She also has a plethora of cute photos with her daughter on Instagram, and I'll put links to her Instagram account and mine in the show notes if you're interested in that. Check out my Facebook group, Parents of Children With Rare Conditions. It's a great supportive community. There's a link in the show notes for that as well. Join us next week for Kim's special topic episode, all about how her faith in God was impacted by her journey with Julianne. We go really deep and I hope you join us. See you then.

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Ep. 107: Season 6 Finale episode w/ Brittany season 6 finale https://d3ctxlq1ktw2nl.cloudfront.net/staging/2022-10-9/295951222-22050-1-4c66a0f45d1b8.m4a

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68: Dipping My Toes into Educational Advocacy

 

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