Ep. 80: Celebrating Our Children + Our Growth w/ Lexie Emory, Roya Malaekeh, Analy Navarro, Heather Cox, and Rayel Lockhart

 

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Summary

In this special Rare Disease Day episode, five parents share ways they have been changed by the rare disease journey, as experienced from the parent-perspective. They also share a few of their favorite things about their child.

This episode is a celebration of the beauty of being parent to medically-complex children and the important lessons we pick up along the way.

Episode Transcript

Lexie Emory  0:00 

Life as her mother isn't about fixing her, she is already perfect.

 

Roya Malaekeh  0:05 

I am a much more confident advocate.

 

Analy Navarro  0:08 

I've become a better person.

 

Rayel Lockhart  0:09 

I now have the ability to push through and be the best version of myself.

 

Heather Cox  0:14 

Just so blessed to have learned what I have from her.

 

Madeline Cheney  0:20 

Hey, you're listening to the Rare Life. I'm your host, Madeline Cheney. I am so excited to celebrate Rare Disease Day with you through this special episode. Some of you may remember that, for last year's Rare Disease Day, we featured 12 parents sharing their stories in three minutes, like a lightning round. Well, I want to change things up a bit this year. I really want this episode to be a celebration of our children and the things we've gained through our journeys with them. I've asked five parents to share a bit about what they love about their child, and how they've changed because of them. As you're listening, you'll notice there's a lot of awesome variety between the parents and their experiences, as well as some cool recurring themes. As they share, I encourage you to reflect on the struggles that you've faced alongside your child as well as what you have gained along the way, and how lucky we are to be their parents. First up, we have parent Lexie.

 

Lexie Emory  1:43 

Hi, I'm Lexie from Phoenix, Arizona. My daughter Harper is almost three years old, she was born at 30 weeks, and she has Turner's syndrome. She is missing her full second X chromosome, and with her syndrome, along with prematurity, it causes feeding issues so she uses a G-tube (gastrostomy tube) for nutrition. She has a significant speech delay, abnormalities in development with her reproductive organs, a webbed neck, and a requirement of growth hormones for short stature. She also requires a lot of monitoring for future issues, but that is all she has at the moment.

One of my favorite cute and quirky things about Harper is the way that she runs. It's really more of a prance, and she prances around with joy and light everywhere she goes. She literally never walks, she runs everywhere. She usually laughs while she's running, and I picture a sparkly rainbow following behind her. It's so magical and everybody really loves this about her. Another thing that is just so cute about my Harper is her love for books. She always has a book in her hands, and she loves to flip through them, and the way she flips through them is so cute just because it's super fast. Then she'll hyperfocus on one page and find the littlest details that she loves. She'll find one little butterfly, she's obsessed with airplanes, soccer balls, and just a bunch of random things that she loves to look through all of her books for, it's really so sweet. My all-time favorite cute and quirky thing about Harper is how she cuddles her sister. Harper is not the snuggly type at all, we always joke that she doesn't sit still long enough to cuddle someone. However, she has recently been really affectionate with her baby sister, who's about a year old. Harper calls her "Ma baby." She cuddles her in just a very specific way. Anna will be crawling around on the ground, Harper will go up to her and put her head right on her chest, and she just stays there. And, like I said, Harper's never still, yet she just stays there and, since she's a baby, Anna will grab her hair and start drumming on her face. Harper just loves it, she giggles and laughs, and she truly loves that physical touch from her sister. It's just the sweetest thing, and she doesn't do it with anyone else, so it melts my heart.

So, what I have gained from the parent experience? Well, when we found out there was something wrong in utero with Harper, our MFM (Maternal-fetal Medicine Specialist) mentioned to us that it could be from a chromosomal defect, and our child very likely may have special needs. I remember in that moment, praying to God and just saying no. No, I am not a special needs mom, like, those are special moms. Those are moms who are really patient, have sweet, soft voices, always have the right thing to say, and can handle anything. I remember just thinking, that is not me. I was just so convinced I could never be that mom. When we received her diagnosis, my heart just slightly began to soften to the idea of it, and we really began to accept the cards we were dealt. Over the next two and a half months that I was still pregnant, my heart just began to soften even more as I realized that this is something I might be okay at. I was still really, really nervous, but the day that she was born, I just remember thinking that God blessed me with a gift and this was not an accident or mistake. I was chosen to have the honor of being her mother, and I, to this day, could never thank God enough for choosing me. After our long NICU day, I began to quickly see all of the delays. The speech, fine motor, gross motor, and physical. It was honestly all consuming. I spent the last three years putting my nose to the grindstone to catch her up. My eyes were set on milestones. And I realized, after three years, that I was missing the point. Life is not about meeting the milestones on time or doing things in perfect order, she will get to where she's going in her own time. Life as her mother isn't about fixing her, she is already perfect. Raising my rare girl is about creating a meaningful life based on her strengths. It's about meeting her where she's at, and loving her through and through. That conclusion is something that's taken a lot of time and a lot of soul-searching to realize I was chasing the idea of what I thought having our daughter was going to be like, and not just accepting her the way she is. Now seeing the absolute beauty that comes in, I feel like I started to miss the beauty in her quirks and her differences. Even though she has quite a bit of delays, sometimes, that's incredible. What I am slowly realizing, with having a second daughter who is developing more typically, is that Harper gets to stay in some of her stages a little bit longer. And that is an incredible thing because kids grow up so fast. In the blink of an eye, one milestone is over. But with Harper, we get to spend a little extra time in each space, and I'm at a place now where I am absolutely cherishing that. I'm just so thankful. Yeah, that is what I have gained from parenting Harper, so far. There's so much I could go into but that is my biggest life lesson at the moment. She's incredible and I'm so thankful to be her mama.

 

Madeline Cheney  9:01 

Lexie, these are words that I think we all need to hear, especially every new parent, as a really good reminder. I think there is a huge pressure on us to get our kids to these milestones as quickly as possible and I think that pressure really can be super suffocating. I just think it's really profound to reach the place where you can truly accept your child exactly as they are and recognize that it's not our job to fix them. Yes, we want our children to reach their full potential, but I think the realization and acceptance you had that every person's full potential is going to be different than the next person's is really profound. And we really do miss out on a lot of joyous moments, just in everyday living, when we're so fixated on getting our kids to the next milestone. So, thank you so much for sharing your insights, Lexie. Next we have Roya.

 

Roya Malaekeh  10:14 

Hi, my name is Roya and I'm from Half Moon Bay, California. I am mom to three awesome kids and I'm a caregiver to my daughter Shadi, who is five years old. Shadi was born with a rare genetic condition called Schaaf-Yang syndrome. Shadi is nonverbal, non-mobile, tube-fed, and does have an autism diagnosis, but that definitely doesn't stop her from developing the greatest personality. We call her our princess warrior because she's so strong and resilient, yet super sweet and gentle. She loves to play with people's hair and knows when to stop. Considering all she goes through, she's got the best attitude. She's my biggest inspiration, right ahead of my boys.

I love being a mom, but I have struggles of my own that make my job harder. When I was 18, I was diagnosed with depression and generalized anxiety disorder. I struggled a lot in college, but I managed to get by through seeing the school counselor regularly. However, I experienced difficult postpartum depression after my first baby. I worked with mental health professionals at the hospital and was prescribed medication and eventually felt pretty stable. Then Shadi was born in 2016. We had no idea there was any issues during the pregnancy so it was a major shock that she was born with complications. I quit my job to take care of my daughter and we started going to multiple ongoing therapies, building a list of specialists, and there was so many different tests and sleep studies. I also had to figure out how to advocate and, honestly, I didn't even really know what that word meant at the time. There was insurance issues and equipment we needed and early intervention. But the worst of it all was seeing my baby struggle. I was overwhelmed by the amount of care involved and the pressure to do it all right. My mental health just declined so quickly. I did not cope well. I isolated a lot at first. I didn't reach out to any family or friends, like you're supposed to, but I was just so depressed, I struggled to eat and take care of myself. All I did was focus my energy on my kids. I couldn't enjoy a single minute of it and I felt like I was drowning. I remember exactly when my rock bottom was, though. I was crying in the car after a doctor's appointment, into a pile of paperwork,  and I was feeling so over it. I didn't know how else to describe it. I'm just so over it. But I realized that if I wasn't going to do it, I would have to leave my daughter at the hands of someone else, and I couldn't bear that fact. It was kind of a light switch moment, it drove me to reach out and get help, and admit that I couldn't do it alone. I'm three years in to seeing a psychologist and a psychiatrist regularly, both of whom I vibe well with. It's for sure been a hard but gratifying journey.

 

Roya Malaekeh  13:13 

There's so many things that I've learned during therapy, but some of the best advice was the hardest to swallow. One of the first things my therapist had me do was to accept my situation. This was the hardest, but I think it was the most important because it allowed me to recognize and actually face my problem and move forward with peace instead of anger. Another thing I think was really important for me was to learn that rest is required, not earned. I think a lot of us grow up thinking the opposite, but in terms of self care, it's been a game changer. I had to learn to reprioritize myself and put me at the top. So, when I felt tired, I closed my computer and watched some TV with my kids. When I felt overwhelmed, I went to the beach and sat by the ocean for an hour. When I felt like I couldn't keep up with her therapies, we switched to one or two therapies at a time instead of all five. The guilt faded when I realized that, when I take those necessary breaks, I come home a happier, well-rested mom and a more motivated caregiver. Another skill I learned was to just be present. I feel like it sounds silly, and probably the easiest, but it was actually pretty hard. I always have swirling thoughts, remembering past traumas, fearing the future, worrying about finances, etc. But if you find tools to center yourself and be present, everything else fades away. For me this was easy, when I start feeling overwhelmed by these thoughts, I take deep breaths and I just go sit with Shadi and play. It's really fun. All these skills took a really long time to learn but I'm glad that I kept with it because it really does pay off.

 

Roya Malaekeh  14:57 

I think having a medically complex child can be very stressful, and the grief can feel really cyclical. I think it's important to learn some of these skills so that you're not being crushed by yourself. So you're not fighting yourself, you're not getting in your own way. I know that applying these skills definitely made me a stronger mom and a better advocate so I can spend my energy focusing on Shadi and making sure she gets everything she needs. Sometimes I think it's a little funny that having Shadi in my life led me to learn to advocate for myself, and advocating for myself, in turn, leads me to advocate better for her. Shadi has experienced so much, she deserves a good life and a good future. Now I know that I can give that to her. It feels good to know that everything she's been through, everything I've gone through as her mom, has been a learning experience for us. I am a much more confident mom, a much more confident advocate, and it feels good to give myself the grace to make mistakes and take breaks without the guilt. Reaching out for help made me more aware of the mental health struggles we all face, especially in our unique community of rare parents and caregivers. Most of us haven't asked to be in this position but we love our kids and we'll do anything for them. Before, I would do anything to see Shadi smile, but now I can also enjoy it.

 

Madeline Cheney  16:42 

Roya, I so appreciate your contribution. I think your vulnerability in sharing your rock bottom and how tough things were emotionally for you is really brave. I know there are a lot of parents that really can relate with what you've experienced. And I think there's a lot to be said for therapy, how much it has helped you in the past and is currently helping you, and I've also been a huge benefactor of therapy. I think a lot of these experiences can hit really hard, especially if we are already predisposed to mental health issues. So I really applaud that you were able to get help, and that your experiences with your daughter really did help you learn to advocate for yourself as well. I just think your experience is really beautiful to hear. I know it probably didn't feel beautiful in the moment and may not even seem like it to you, but thank you so much for sharing with such vulnerability. All right, now we get to hear from Analy.

 

Analy Navarro  17:49 

Hi, I'm Analy Navarro from Atlanta, Georgia. My daughter, Julia, is four and a half years old and was born with biliary atresia. Biliary atresia is a rare liver disease that is the main cause of liver transplantation in children in the US, and I had the most amazing opportunity to be her living donor. Julia is now four and a half and she is smart, strong, kind, and very creative. She loves horseback riding, reading, and dancing. She wants to be a scientist, a doctor, an author, and also a painter when she grows up. I'm sure at school it is going to be quite pricey so we've already started saving for her. I, as many of you are, am a rare-disease mom and a transplant mom, and also a living organ donor. All of these are equally important to me because they have changed me in the best way possible. When she was initially diagnosed, I quickly found myself navigating this rare disease world with so many unknowns, but I also found myself being part of this new rare disease community and of this liver family that just welcomed us, and it definitely made our journey so much better. I know that a rare disease diagnosis can be challenging, and hard, and so very scary at times, especially at the beginning. It's overwhelming, having to learn so much information and maintain your sanity, and still be a powerhouse of hope and positive energy for your child. But it can definitely be done. Never, I think that never, ever in my lifetime would I have imagined that we would find ourselves going through everything that we did. I think that, as new parents, we have this perfect movie envisioned, and we see ourselves having a healthy, beautiful, and strong baby. My baby is beautiful and incredibly strong, and thanks to her amazing team of doctors, now she's healthy and thriving too.

Our journey was a difficult one. It was full of challenges, but it was also a beautiful one and I have embraced the experience. I think that for Julia, having lived all of this at such a young age, talking to her about her story and transplant journey has always been very important to me. I want her to be empowered by her journey and to own her story with pride and grace. Being a parent to a child with a complex medical history, in our case, biliary atresia and a liver transplant, can be very challenging as they grew up. I mean, it's hard at any age, but especially when they're this little. So, this is how my book, Mighty Me, was born. I realized that there were no books that she could identify with and see herself in. There were no books about organ transplants that could open this very important dialogue with her in a child-friendly way. So I decided to write one, and not just for her, but for a community as well. These are formative years and, although she's only four, conversations like these are very important and very much needed, not only with our own children, but also with their friends and their classmates as well. So the more I thought about it, the more I became passionate, and I decided to make it my mission and make it happen. I wanted other children with transplants and complex medical conditions to see themselves as heroes of their own stories. I want them to be empowered by their journeys and be proud of how brave and strong they are. I don't want them growing up, especially her, resenting their journey and thinking of their story as something sad or negative that they have to go through. I want Julia, and any other transplant child like her, to be able to speak about their stories with their friends and classmates with confidence, pride, and purpose. Having a purpose in life is so important, it gives you that much power. It gives you that much confidence, which is needed for you to be successful in life, and to be an advocate for whatever it is that you are passionate about. I hope that, through our story and our book, we can help educate other children about transplants, organ donation and rare diseases. Mighty Me is about my mighty Julia and our transplant story. I think there is beauty in everything and I want her to see things the same way too. I've learned to find the beauty in everything, even in the most difficult of times. I have also learned that advocacy can look very different for everyone, we shouldn't limit ourselves. There are many gaps that need to be filled within our own communities and honestly, there's no one that knows that better than we do. So, what does your community need? What does your child need? What is something that you will love for your child to have, or for other children to have, to be able to feel that empowerment and that pride in their journey, and also be a way to educate others and make your child's journey easier. So let's allow our journeys, as hard as they might be, give us purpose in finding a new calling to serve our communities and finding creative ways to advocate for children and others like them. My life with Julian is beautiful, and I wouldn't trade it for the world. It's been the joy of my life to give life to her twice. And, thanks to our experience, i've become a better person, mother, an advocate for organ donation, and a children's book author. It's been quite a journey for us. It's been beautiful and rough, and I wouldn't change it for the world. It has been an amazing journey, and I hope that you are able to also find the beauty in your journey, and a purpose that comes with it.

 

Madeline Cheney  24:05 

Wow, Analy, I love the power in this. I love how empowered you are in creating this children's book and in becoming an advocate. I love that you are motivated to create that children's book to empower your daughter. I also love your desire to empower each of us, as parents, to find our own passion and our own ways of improving the world and our own space. I think your passion is really contagious. I hope each of us listening can think of just one way, tiny or huge or somewhere in between, to make a positive difference in our spaces. It doesn't have to be momentous, it's not an all or nothing type of situation. Even things like smiling at other parents when you're at a clinic, as cheesy as that sounds, it really does make a difference, instead of just keeping your eyes on the floor and, you know, hustling through. As parents, we need each other and that little bit of encouragement and warmth. Just making eye contact with another parent can be really powerful. Just food for thought. Also, for those interested, there is a link in the show notes so you can check out and Analy's book, Mighty Me. She actually gifted us a copy of it, and it really is gorgeous. It's just full of magic and symbolism, and I thought it was really fun to read my kids. Alright, next we have Heather.

 

Heather Cox  25:40 

Hi, I'm Heather, a Kiwi living in Sydney, Australia, and my daughter Arianna is nearly six years old and has Sotos syndrome, the rare disease affecting one in 14,000. She wasn't diagnosed until she was nearly two, but she had many common issues, from Sotos syndrome, low tone, low blood sugars at birth, and infantile scoliosis, which required bracing, and still does at night. She has sensory processing disorders, she's very movement seeking.

 

Heather Cox  26:13 

She's a great kid, she's really sweet and loving, she's always asking me for cuddles. She's very creative, she spends her days drawing, she loves constructing things out of the furniture around our house like pillows, her toys, and various different things. She loves pretend play, which is really fun. I love that she surprises everyone once they get to know her and see how capable she is. She's an amazing swimmer, she's really quite good at drawing, she watches and learns from others, and she's just come so far, from the baby she was to the child she is today. She's on track to start mainstream school next month, actually. I'm really proud of her and how far she's come. Having a child with a rare condition, a disability, it's changed me profoundly, and i'm sure that many parents will attest to that with their children too. Before Ariana, I had really no experience or exposure to people with disabilities. I was brought up in a different world, where disability was somewhat hidden, or the narratives around disability were just about how tragic and awful it was. It was seen as a less-than experience to have a disability, or to be the mom of a child with a disability. A worst case nightmare scenario, almost. So, when I had a child with a disability, that was the narrative that I had, in my mind, It actually took having a child with a rare condition to see how wrong that narrative really was. It's just so much more complex and deeper than anyone can imagine. There are challenges, but it's full of perspectives and gifts along the way if you're open to see them. It's a rollercoaster ride, and seeing my daughter grow and achieve simple things like, she was chew-fed as a baby, not by mouth, and she was actually pump-fed at one point. Just seeing her eat an ice cream today without choking, or ride a scooter because she shouldn't walk till she was nearly two. They feel like watching miracles unfold. I'm just so much more aware of how much luck plays into all our abilities and the value in the journey, not just the destination. It really changes you. I've also met other rare moms and I learned so much about the power of talking to people with experience and learning from them. I've talked to so many parents about what it's like raising a child with Soto syndrome, I've spoken to so many people with neurodiversities and adults with Soto syndrome and their experience, and learning from them has been invaluable and really changed my perspective on things. Reading The Special Book by Melanie Dimmitt was a real game-changer for me in shifting my perspective. She writes so brilliantly, interviewing other parents who've raised children with disabilities and are further along the journey than me, about dealing with comparisons and other challenging things. I did an excellent program called Now and Next by the organization Plumtree that was local to me, and that taught me how to set goals for my child and my family, focus on Ariana's strengths, and be empowered as the parent. The therapist was there for me and my child to help upskill her, but also upskill me in what she needs so that I can take that knowledge to other areas of her life, like daycare, playgrounds, and get more out of the session than just the hour working with her. I realized the important role I played, as her advocate in the world, and to ensure that she has access to a full life and is treated as an equal.

 

Heather Cox  29:58 

I've become a real advocate for other families as well. I've supported other families through volunteering as part of the Soto Syndrome Association of Australasia. I've grown in my knowledge, perspective, understanding of what matters, and empathy. Having a child with a rare disease teaches you that, one of 14,000 ,one in a 1,000,000, one in 50,000, that can be any of us. How, not rare, collectively, rare diseases really are. I think most countries will say, you know, 20% of the population have some level of a disability or some type of a disability. And we all have challenges in life. Not many of us get a free pass through life without any major challenges, even the celebrities, but we can make the cards work for us. The journey continues for us, and she starts school next year. But most days I just feel lucky. We spent the first year with my daughter in and out of a hospital, and to see where she is today, we're just so lucky. I've learned so much through raising Ariana. Of course I worry about my daughter all the time. And I also worry about my other, "typical" daughter, I think all parents can relate to that. These days, my worries for Ariana are more about things like ableism and being excluded. I want her to feel valued, as she deserves to be, but about who she is. I know that she's a beautiful, capable girl, as her sister is, and I just want the world to have space for her and all unique children. I'm just so blessed to have learned all I have from her. Thank you.

 

Madeline Cheney  31:51 

Heather, thank you so much for sharing that. I love all the growth and transformation that you were able to feel with your daughter. I also love that you brought up the ingrained ableism, or prejudice, that you felt about people who are disabled. I think that most of us have that, relating to having a child with disabilities. I think that really shapes a lot of our, especially earlier, experiences with it. So I really appreciate your honesty in talking about that. I think it's really important to recognize the misconceptions we have about disability, going into it as new parents. What a beautiful tribute to the things you've learned. The love you have for your daughter just shines through so brightly. Thank you so much for sharing. And last but not least, we have Rayel.

 

Rayel Lockhart  32:50 

Hi there, I'm Rayel Lockhart from Grand Prairie, Alberta, Canada. My son, Arden, is 20 months old and has Escobar syndrome. In Arden's case, he now relies on a tracheostomy and ventilator for his breathing needs. Of course, as a mom, I think that my kid is the cutest and three of my favorite cute things about Arden is, one, he is so incredibly nosy. He wants to know everything that is happening around him and because of this, he's such a quick learner. He can learn a new ASL sign in a day or two because he just wants so badly to be able to tell everyone what he wants. The second one is Arden loves the NHL hokey team, Edmonton Oilers. He has an Edmonton Oilers pillow that his cousin made for him, and it has to come everywhere with him. He also claps and waves his hands in the air when he sees or hears hockey on TV. He absolutely loves it. The third thing is, Arden loves showing off. He knows all the parts of his body and if you ask him, "Where's your nose?". or "Where's your toes?", stuff like that, he happily points and shows off what he knows because he just wants to show everybody how smart he is.

 

Rayel Lockhart  34:03 

So, with my journey as a medical mom, I think that it really changed who I was at my core, especially from a mental and emotional standpoint. For as long as I can remember, I've suffered from depression and anxiety, the depression comes and goes. It's largely influenced by stressful periods of my life, but anxiety is something that has plagued me for a very long time and has impacted the types of opportunities and challenges that I have been able to push myself to take on. Although I do often feel a sense of confidence in myself as a person, a teacher, a mom, etc., my anxiety often tells me that I'm not good enough. This can be especially difficult in social situations, where I'm constantly second-guessing everything that I say or wondering how my words will be received by other people. Having Arden completely changed my life. I mean, of course I knew that being a mother would change me, but I never really expected some of the mental and emotional changes that I felt taking place as Arden grew and as I grew into my unique role as his mom. My husband and I have always been a team, and when Arden was born, I really felt like a lesser part of that team. I felt unsure, being the person who does not have a medical background. My husband's a physical therapist, he's worked in a hospital setting, he has advanced knowledge of the human body. I, however, had no medical knowledge prior to Arden's birth. Everything was new and terrifying to me, and let me tell you, nothing prepares you to see your brand new baby intubated, ventilated, with five or six IV lines attached to them, nitric oxide being used to keep their lungs open, etc. I definitely leaned on Brody, my husband, during those first weeks. I really felt so timid, and I was grieving what we had imagined for our birth story, what we had imagined for bringing our baby home. However, when Arden was only a few weeks old, he and I had to stay in the city while he was still in hospital, Brody had to return home, so for us, that's over five hours away from the city, during the weekdays for work. He would only be able to return on the weekends to spend two, sometimes three days with us, and then return home again for work. I can honestly pinpoint the exact moment when I became a completely different person because it happened as I watched Brody driving way to go back to work. In that moment, I really just decided that the only person getting me through our experience would be me. I knew that I had to be strong, and the coping mechanisms that I had held on to in the past just wouldn't work. It was as if I somehow knew that my anxiety wouldn't serve me in any positive way, and that if I broke down emotionally, I wouldn't be able to be the mom that I knew I needed to be for Arden.

 

Rayel Lockhart  36:46 

During the seven and a half months that Arden spent in the hospital, I spent every waking moment by his bedside. I was learning about ventilator pressures, blood gas numbers, suctioning, PICC lines, medications, all that jazz. I honestly took detailed notes, like a madwoman, every single day until I was confident that I could advocate in Arden's best interest. Rounds at the hospital in the ICU occurred every morning and night, with up to 10 doctors and other medical professionals present at each round. Honestly, before Arden was born, I was a much more meek person. In my personal life with family and friends, I've always been able to express myself well enough but at my work as a teacher, I often struggled to speak up during staff meetings and planning periods with other educators. I did not feel the confidence to do so. However, when meetings started involving my son, I found that I could speak up in a room filled with ICU doctors. without a shred of self doubt. I talked about it with a therapist while Arden was in the hospital, and after quite a few sessions, I admitted that I had previously suffered with severe anxiety. Shockingly, in one session, she remarked that she had never guessed that I was an anxious person. At that point, I knew a huge change had occurred in me. I had definitely hidden my anxiety in other settings before, work, for example, but I realized, when speaking to the therapist, that I wasn't hiding my anxiety, it just didn't exist in my world as a medical mom. Now, the word "home" I definitely have anxious feelings that come up for various reasons. Usually I get a little bit anxious and on edge when we have to travel for Arden's appointments, and I definitely feel my anxiety in my body each time he has another surgery. I still hate making appointment phone calls for myself, that's another part of my social anxiety. That's always been a source of stress for me, but now the state of my mental health rarely becomes debilitating for me. I've learned to allow feelings of self-doubt, worry, grief, and trauma to pass through. I can accept that those feelings are going to be a part of my life without letting them consume all of my energy. I now have the ability to push through so that I can be the best version of myself. For me, and our family.

 

Madeline Cheney  39:03 

I love your story, Rayel. I think it is so interesting that being pushed beyond your limits to that degree with your child, at the hospital, being without your husband, and that that was kind of your moment of transformation and of really growing into that new role as a medical mom. I think it's really incredible what we can manage to do, pushing ourselves past so many limits that we have when it's for someone like our child, that we love so, so much and so unconditionally.

 

Madeline Cheney  39:39 

Huge thank you to each parent that contributed to this special Rare Disease Day episode. It would not be possible without you. You can find links in the show notes to follow each of these lovely parents on Instagram. You can also find links to the two books that were mentioned in the episode. Be sure to join our Facebook group, Parents of Children with Rare Conditions. It's a really supportive community of parents who get it. There is a link for that as well. Join us next week as I chat with mom, Kimberly Arnold, about her experiences with her daughter Julia, who was born with a fractured rib and a broken arm due to a rare syndrome known as brittle bones disease. This is one of my favorite story episodes of all time. Don't miss it. See you then.

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Ep. 90: Living with Sleep Deprivation w/ Jill Arneson Underslept https://d3ctxlq1ktw2nl.cloudfront.net/staging/2022-4-12/4d5d4527-3978-3e8d-d2a1-f3f7f9ce8d4b.mp3

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68: Dipping My Toes into Educational Advocacy

 

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