Ep. 116: Kinda Obsessed| Celebrating Our Relationships with Our Children With Rare Conditions w/ 24 Parent-Contributors




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Today, we have one of my favorite episodes ever to share with you! It’s Rare Disease Day, and while we’ve done episodes for this awareness day in the past, I wanted offer something a little different this time around.

So instead of a discussion of rare diseases or diagnoses or even awareness, we’re celebrating the beautiful and unique relationships we get to have with our rare kiddos. I asked parents from our community to record their answers to four questions about their relationship with their kids, from your favorite thing about your child to your favorite moments with your kids to the moments that have made you the most proud, and we received 24 responses. Listening back through them to compile this episode, I teared up more than once because all these responses were bursting with love and connection.

Some of the reflections shared were so personal and tender. At the end of the day, it’s so clear to me that we are all our kids’ fiercest advocates and number one fans, but it’s not every day that we actually get a space to talk about just how amazing our kids are. If you’re the parent of a child with a rare disease (or any medical complexity!), you’re going to love this episode.

And if you’d like to join in the celebration, we’ll be asking these questions again on Instagram this week (link to my page is below) and you’ll be able to share your own answers with all of us.

Thanks again to each and every parent who shared audio with us for this episode. I’m so honored that you feel safe and supported in this space and that you’ve let us into these tender moments. Together, we’ve created something so special and I’m so excited to share this episode with you.

Episode Transcript

Katie 00:00

My favorite thing about Max is his laugh.


Alicia 00:04

I feel the biggest connection with her when we're snuggling, and I don't have any expectations of her.


Jane 00:12

Every second of Georgia's life, I'm proud of her.


Abbie 00:15

I felt really proud as his parent every time I stuck up for him.


Madeline Cheney  00:19

Hello, you're listening to The Rare Life. I'm your host, Madeline Cheney, and today, I have for you what is one of my very favorite episodes to date! I know. That's like a really big statement to make, but I'm seriously obsessed with this one.


Madeline Cheney  00:40

I asked parent listeners on my Instagram stories to answer four questions about their relationships with their medically complex children in audio recordings, and two dozen parents responded. And the answers are just so tender, you guys, I felt pretty choked up while listening through them. And I'm so excited to share them with you and get you pondering the same questions and how you might have answered them yourselves.


Now, as many of you are aware of, today is Rare Disease Day, which is typically full of raising awareness about different rare diseases and syndromes that many people live with and die from, including our incredible kids. But today, I just really wanted to hone in on what matters the very most of maybe anything in our lives, and that is our love and our relationships with our kids - that are both living and passed on.


As I was listening to each response, I was hit with how ordinary our relationships are with our medically complex kids. Because yes, any parent would feel that way. But at the same time, I feel like they're so unique: such a unique flavor, intensity, and tenderness to our relationships with them. Why? Because they've been through so much. We've been through so much. Together, we've endured things most parents couldn't even imagine. And oh, my gosh, if that does not create this really beautiful thing.


And I have to say too, I just freaking love every single one of you. Even though these 24 parents are just a tiny percentage of our listeners in our community. I just know your responses would be very similar, and my heart was just swelling with love and pride for each of you, and your incredible kids too. It's just so sappy. But I really mean it. Okay, enough of that sappy stuff.


So, this is how it's gonna work. It's like this super complicated setup that I came up with where I will read off the question, and then we'll hear all the answers. And then I'll read off the next question, and we'll listen to all the answers. And we'll go through each of the four questions like that. Not complicated at all. It's super simple.


But I, again, I think the answers are super powerful. And I think that will be very relatable to each of you, and as I mentioned before, I encourage you to answer each question in your own heart and ponder, what would you have said?, and really just lean into the love that we have for each and every one of our kids that live with rare conditions and rare diseases, and really any medical complexity and disability. All right, let's jump in.


First question: What is one of your favorite things about your child?


Abbie  03:35

Hi, my child's name is Noah Merrill, he passed away the end of August of this year. And one of my favorite things about Noah, he had the most beautiful, curly red hair. And he had this ability to make everyone feel just absolutely calm around him. He just had like, the calmest vibe.


Alicia 04:02

My daughter's name is Georgia. One of my very favorite things about her is that she is just so excited to talk to anybody. She's so outgoing. She really, really just enjoys connecting with people.


Alison Payne 04:20

Hi, my child's name is Faith Eileen Rummel. My favorite thing about my daughter is her ability and her motivation to just tackle anything. As an adult, I feel like it's so easy to get in our own heads. But that childlike faith and that childlike endurance and willingness to do any and everything really captivates me, and I just love her for that.


Andrea Torres 04:48

My son's name is Benjamin. One of my favorite things about Benjamin is his laugh. 1,000%. It is the most infectious thing ever, and it makes my heart so happy.


Carolina Quijada 05:02

Hello, my name is Carolina, and I have a 21-month-old daughter named Cruz, with maple syrup urine disease. One of my favorite things about Cruz is her smile. Cruz loves to smile, and she has the cutest dimples. And let me tell you, I could be having a tough day, and just seeing her run up to me smiling just changes everything for me and it just melts my heart.


Daniel DeFabio  05:27

Hi, my son's name is Lucas and he had Menkes syndrome. One of my favorite things about him was his amazing smile and laugh, sometimes very sly smile like it was up to no good. And sometimes the laugh came at the most inappropriate times.

Usually if my wife or I had injured ourselves, bumped our head on a cabinet or hit our thumb with a hammer, he would laugh uproariously. And while that may seem inappropriate, it was actually this wonderful reminder of, we shouldn't let things upset us because he didn't see it that way.


Erica Ryan 06:05

My child's name is Westley. My favorite thing about Westley is how his smile could light up a room and make any tough situation melt away.


Jane Denn 06:14

My daughter's name is Georgia and my favorite thing about Georgia is everything. I love every single thing about her, but her resiliency is unmatched. It's not fair at all what Georgia has been through in her two and a half years of life. She spent 180 days in the hospital so far, she's endured three brain surgeries and countless procedures and pokes. But, in spite of all that, she's the happiest two-year-old in the entire world. And I think that's really, really special.


Her laugh is also my favorite thing. She wasn't able to show much emotion in the beginning of her life, and when she was about 19 months old, after her third brain surgery, she started laughing. Like, really laughing. And it is my favorite thing in the whole world to hear her laugh.


Jessica Duffy 07:09

My child's name Violet. One of my favorite things about her...I mean, gosh, just really everything to be honest. But I'd have to say, I really just love her sweet demeanor, and her cute little smile.


Julianna Morasse 07:23

My son's name is Atticus, and we call him Attie-bird. Our favorite thing about him is the sunshine he brings in every room that he enters. Whether it's a doctor's office, a therapist, or just a friend, he always brings sunshine.


Kahrissa Taylor 07:40

I'm Kahrissa Taylor, my son's name is Rowan Taylor. My favorite thing about Rowan is his smile, and his love for people. He really loves people so much.


Kari Harbath  07:54

My child's name is Sloan. One favorite thing about her is her personality - she's determined to do and get what she wants. There is no stopping Sloan, and not in like the, I guess, toxic positivity, "there's no stopping her!" way. Truly, if she wants to nap, she's gonna nap. Nobody's gonna mess with it. If she wants to eat, she's going to eat. Nobody's going to mess with it.


And I just love that dearly about her. And she has had that fire since the day she was born. And that, I think is my favorite thing. My absolute favorite thing about Sloan.


Karley Henderson  08:29

My daughter's name is Nora. My favorite thing about Nora is probably that no matter what she goes through, she is still Nora. She's still funny. She's still wild. She's still herself despite all of the challenges she might have.


Kathryn  08:47

My son's name is Henry. One of the things I enjoy the most about Henry is his calm, peaceful energy. When you're around him, he brings a lot of serenity, and he helps us all breathe a little deeper. Even kids at daycare seem to notice; when they're having a hard day, they will go sit next to him and enjoy his cool, calm, peaceful vibes. It's really nice to watch.


Katie  09:17

Hi there. My child's name is Max. My favorite thing about Max is his laugh. He has the best laugh, and it will brighten up the room. It just instantly changes your mood when you hear this laugh, and it just brings a smile to your face. It is easily the best part of my day hearing him laugh.


Lillian  09:46

My child's name is Paisley, we call her Amazing Paisley, because that's simply what she is. One of my favorite things about her is that she's mischievous and it is perfect for her.


Loren  09:58

Hi, my child's name is Hana. One of my favorite things about Hana is her wicked and mischievous sense of humor. It catches me off guard all the time. And it's amazing, and it makes us all laugh.


Lysa  10:14

My child's name is Kiara. And I'm Lysa, her mom. Kiara loves to smile and to laugh. She has a very easygoing attitude and personality. She has yet to say any words, but will definitely show us how she's feeling.


Madeleine  10:29

My child's name is Margo. One of my favorite things about Margo is seeing how happy she is when we put her in the tub or in a pool. Margo loves the water. She has very low tone, so on land, she can't move independently or hold her head. But in the water, in a floating device, she can move around on her own, and she loves it.


Megan Schneider  10:49

My daughter's name is Emmy. My favorite things about her are her snuggly heart, and the fact that she's a feisty fighter.


Rachel  10:57

My daughter's name is Audrey. One of my favorite things about her is her infectious smile.


Sarah  11:04

My child's name is Rhett. One of my favorite things about my son is his genuine zest for life. He has a joyful spirit, and the most infectious smile. It's hard to be around him and not feel happy.


Sophia  11:24

My child's name is Penny. My favorite thing about penny is her sweet, unique demeanor, and her big toothy smile that just draws people in and makes people fall in love with her.


Madeline Cheney  11:44

In which moments do you feel the deepest connection with your child?


Abbie 11:49

When he was alive, I always felt close to him when we would watch things that he liked. He liked musicals. And so, we would watch the musicals, and I would move his arms and we would dance to the music together. And he loved that, I always felt more connected to him.


Alicia 12:08

I feel the biggest connection with her when we're snuggling, and I don't have any expectations of her, and she doesn't have any expectations of me. And we can just relax on a Saturday morning and snuggle.


Alison Payne 12:24

One of our deepest moments that we've had connection is, mostly, I feel it when we are laying in my bed together. She spent 205 days in the NICU, and there was a point where she outgrew the little, small, warmer bed, and she upgraded to a crib.


And I'm not sure what the cribs are weight tested for, but I'm sure I probably shouldn't have been crawling into her NICU crib. But I did. Because I didn't know if I would ever get the opportunity. I didn't know she would come home with us. I just didn't know; it was scary at some points.


So, I made it a point to crawl in the bed with her. And the doctors and everyone looked at me crazy, but I didn't care. So, having that moment here at home, when she's going down for a nap and she wants to come into my bed, I just take every opportunity to lay in that bed with her.


Andrea Torres 13:22

I feel the deepest connection to Benjamin when we are having fun together - whether that's tickling him or rolling a toy back and forth on the floor. Just simple, sweet moments where we're engaging with each other in play.


Bobbi Ulanicki 13:41

My daughter's name is Ruthie. And when I feel most connected to her, I think is when it's just the two of us together, in a rocking chair at night. Whether it's reading a book, or singing a song, I feel most connected when it's just the two of us together.


Brittany Steitz  13:59

And I'm also really most connected when I'm able to share the research we have on his case with other families around the world. And even geneticists and doctors to help connect the dots on this rare condition.


Carolina Quijada 14:13

The moment where I have felt the deepest connection with Cruz has actually been during her hospital stays. Those are usually the most stressful times for me, but I see the strength and the courage my daughter has as she goes through everything that these hospital stays entail, and she still smiles through it all.


She still enjoys interacting with everyone who comes into her room during the time that we're there, and it really just reminds me that we're a team and we're gonna get through this. Together. And she really does give me that peace I need during those times.


Courtney Hightower 14:55

I feel most connected with Cohen when we're doing, just, her normal activities of what she's doing, so me entering in. But currently, we got a new puppy. And our puppy was born in July, and she loves our puppy. And so, we're connecting through our puppy - loving on our puppy and petting our puppy. That's a new way of connection.


Daniel DeFabio 15:22

The time where I would feel a very deep connection to Lucas that was fraught and full of sadness was my drive time, after dropping him off with care, usually my mom, for care. And having that alone time to be with my thoughts was very difficult for me, the thoughts would turn to losing him.


Now that we have lost him, we've memorialized him with some trees. But trees in general seem to symbolize him in a way, or reconnect me to him, or represent the cycle of life. So, those moments where I can find some peaceful time with trees tend to be my new connection to Lucas.


Erica Ryan 16:13

I felt my deepest connection to Leslie in the moments he would look up at me. and grin because he could hear my voice, and know he was deeply loved. Even though he's now in heaven, I still feel that deep connection with every sunrise, sunset, butterfly, ladybug, and snowfall that I see.


Jane Denn 16:30

Moments when we felt deeply connected to Georgia. When she was in the NICU, she was in an open bay NICU, so all the babies were in the same room. And her nurses used to tell me that when I would walk in the room, and I would sign in with the receptionist and talk to her for a moment, that Georgia would hear my voice, her eyes would light up and she would look around trying to find me.


And I know that that's because she knew I'm her mom, she knew I was there to be with her. And I spent so many hours sitting beside her little isolette, making promises to her that, luckily, I have been able to keep. So, I think that's really special.


Jessica Duffy 17:10

I feel my deepest connection with Violet after she's upset, and I can just hold her, rock her, and calm her down, and there's the sense of peace that comes over us. And I'm able to just be still with her. I really do love those moments.


Julianna Morasse 17:26

A moment which we felt so deeply connected, is literally every time he looks into our eyes, and trusts us in really scary situations.


Kahrissa Taylor  17:37

My moments of deepest connection with him are definitely when we lay down after a long day in bed. And when we're able to just read and rest together, and just have moments of some peace. And I really just love those moments with him.


Kari Harbath 17:53

The moments that I feel the deepest connection with her are when she's able to let her guard down and feel comfortable with mom. Because we've had so many medical experiences, so many therapies, so many appointments, so many people in and out of our life since the day she was born, as normal with, you know, disabled kids and medically complex kids.


She's had more than most. I mean, she has more friends than most adults do in her short three years. And so, when we can just have our own mom-daughter time, and we're able to have that quality time and that quality connection, I think that's when I feel the deepest connection with her. Those snuggles, and those connective moments where I can tell she's able to let her guard down mean everything to me.


Karley Henderson  18:37

I probably feel the deepest connection with her when we have dance parties, because that is something that we did before she could walk. We did it when she's been in the hospital, and we still do it now. It's just something that me and her have, that we can like, shake it off, and just let it go. Let everything go, and just be present with one another.


Kathryn 19:02

I feel most connected to him when we're out in nature. That's something that's important to me. I love hiking and backpacking, and just being outside with him, breathing fresh air, enjoying a sunset, it really makes me feel connected to him.


Katie  19:19

Moments where I feel the deepest connection to Max would be when we are spending time just the two of us. And even though we are communicating in a nonverbal way, we are communicating in a way that we know and in a way that works for us. And it brings us closer together. I am so grateful for those times because that is where I feel the most connected to my child.


Lillian 19:56

A moment that I've felt the deepest connection is generally when she's upset, or angry. Although she can't verbally communicate to me, she has many other means of communication, and we definitely are able to understand her.


Loren  20:13

The moments I feel the deepest connection to Hana are when she surprises me with what she really wants, which is all of us to be together. She is a toddler, she has a baby sister. And I keep thinking that she is going to want to go off and do special big kids stuff, just her. And with either me, or her dad together.


Instead, she really wants all four of us to be together. And she talks about that, and she wants us all to hold hands. It surprises me, it's something that I am continually shocked by, and it's really the time that I stop and really see her as this little human that is seeking out very specific types of human connection.


Lysa  20:59

Whenever we are hanging out, spending quality time together, looking at books, or playing with toys, is when I feel most connected to her. Sadly, I also feel a deep connection to her whenever we are at the hospital. I feel this overwhelming love and connection to her whenever she is suffering.


Madeleine  21:19

Recently, I have felt the deepest connection with my child when we were inpatient. Maybe that's because we've been inpatient a lot in the last few months, but when we're at the hospital, I cannot focus on anything else. I have to explain to the medical team, her history, what is happening with her, I have to help make decisions about what treatments are best. I spent all day and night with her, and my main goal is making her feel better and getting out of here.


Megan Schneider 21:42

I feel a deep connection with my daughter every day, especially when she sees me personally. She has this special wiggle, and a special yell-out that makes me feel super special, and makes me feel loved. And we definitely have that connection when we see each other we're very excited to see each other. My daughter has trouble enunciating, and she cannot smile due to her condition. So, she has to use her eyes, and her voice, and the body language to make some of her needs known.


Rachel  22:15

I felt the deepest connection when she gets the humor in a book that I'm reading to her, and we laugh together.


Sarah  22:21

I feel deeply connected to my child when we are snuggling, or I'm reading him a book, or feeding him, doing anything together honestly, because he does depend on me for a lot of things. Though he's gaining some independence as he gets older, he still requires my help in doing most things. I'm his legs, I'm his arms in some ways. And so, really any kind of activity that we experienced together, I feel a deep connection to him. So a lot of things, pretty much everything.


Sophia  23:09

The moment that I feel the deepest connection to Penny is when I'm speaking to her, or I say her name, or touch her, and she looks me directly in the eye - which is not normal for her, she doesn't make eye contact very often - and flashes her big smile at me. It just melts my heart, and makes me feel that I know she loves me. And that our connection is really strong despite her not being able to verbalize that.


Madeline Cheney  23:42

When was a moment you felt proud of your child?


Abbie 23:45

I think the most proud I've ever felt of Noah was when he passed. For a long time, my husband and I had been feeling like the next time he got sick, it was just time to let him pass away, and to not do as many interventions and let him go. That his soul was tired, and he was done living such a hard life. And I was really proud of him for trying as long as he did. Because I knew it was for me and my husband, and not for him.


Alicia 24:16

A time that I felt super proud of my child was when we were going through the airport, and she's blind, so she has a cane, and the airport officer was escorting her around the X-ray machine, I guess? Because she can't go through the X ray machine, because she has a shunt device in her head.


So, she was escorting her around, and the airport officer said, "Okay, your stick is gonna run into this bump here." And she looked at her and said, "It's not a stick. It's called a cane." And I was super proud of her for telling them like it is.


Alison Payne  24:57

One moment that I've been really proud of her lately is, she's really working hard on a lot of new motor skills, she's trying to stand and crawl. And just every time that I see her, lift her head up, or I see her try to pull up onto an object with assistance, it just makes my heart swell with just such pride and joy. She's amazing.


Andrea Torres 25:22

I think one of the most recent times I was proud of Benjamin was when he opens the flip top to his water bottle. Because that's not a skill that he has - motor skills and motor planning is really challenging for him. So, when I watched him open the little straw to his water bottle, I felt lost my mind with excitement.


Bobbi Ulanicki 25:45

I think what I'm most proud of with Ruth, there's so many things, I'm most proud of her determination and her fight, and to watch her push through everything that she's had to go through. And to watch her learn to eat, and to crawl, and to stand, and walk is something that makes me incredibly proud to be her mom.


Brittany Steitz  26:15

My name is Brittany Steitz, and my child's name is Logan. And I lost Logan, unfortunately, in utero, so I don't have much experience being his mom earthside. But the deepest connection I have to him and the way I feel most proud to be his parents are kind of twofold.


I'm really proud of the way that his diagnosis has led me to this community, and the way I've been able to get involved and help support the families that carry our condition, CDPX1, and then support other medical parents as best I can.


Carolina Quijada 26:56

A moment where I have felt proud of Cruz is honestly every time she has met a milestone we were told she would not meet, or would be really behind or delayed to meet. Cruz has always done things on her own time, and that's what we've learned to do. To just be patient, and give her time, and celebrate when she does.


Daniel DeFabio  27:19

One of the times I was most proud of Lucas, his school would often estimate his abilities a bit higher than my wife and I might think was true. And we weren't sure if we were seeing the same things they were seeing. And one day, they said he reached out to another classmate - he was in a special needs classroom.


Lucas had no language and was very limited in his motor control. So, that he reached out to a fellow classmate who was in distress seemed impossible to us, or beyond his abilities. And then, they sent us a photograph. And it was the most touching example. Clearly, he was trying to comfort his friend lying on the floor mats in the classroom.


Erica Ryan 28:07

He made me proud every day that he kept breathing, smiling, and laughing. Seeing him off to school for the first time, which we never thought he'd made it to, was such a blessing to watch.


Jane Denn 28:18

Every second of Georgia's life, I'm proud of her. She is so tolerant. I enroll her in every therapy I can think of, I try every device or piece of medical equipment that I think will help her, I take her to every specialist, and she takes it all in stride. She never fusses, she never pitches a fit. She just goes with it. And she's so strong, and she's so brave. And that makes me incredibly proud of her.


Jessica Duffy 28:46

Describe a moment when I felt proud of her, I mean, honestly, every single day. With the amount of tests, procedures, medication, and therapies that she has to endure, I just really, I'm so proud of her resiliency.


Julianna Morasse 28:59

The time I felt the most proud of him is when he gave me permission to undergo a really scary medical situation. He looked in my eyes, he said, "Yes, Mama, it's okay." And we proceeded to hold him down, and to do the very scary thing.


Kahrissa Taylor 29:18

And then a moment that I felt proud of Rowan is when he started being able to kind of advocate for himself, in a way, where he's able to tell us "No, I don't like that," or "I don't need that."


Even if it's not using actual words, sometimes; if he's just able to explain, or kind of show us that he doesn't like something, I feel really proud of him in those moments. And I'm really thankful that he's learning to stand up for himself in those ways.


Karley Henderson  29:51

I am proud of Nora every single day. She amazes me so much; it blows my mind how strong she is. And, as I said, like she's still herself no matter what. And that makes me so proud of her.


Kathryn  30:07

I am really proud of him for holding his bottle. He is three-years-old, it's been a lot of therapy and a lot of time. And yet, I noticed him gaining independence. And it's wonderful. And even these small ways to see him, learn and do some things for himself.


Katie  30:32

Moments where I have felt proud of Max has been basically at any appointment where we've heard, "He may never be able to do this." Or, "He may never be able to do that." But then he does it. And it is like, heck, yes, I am so proud of you, because I know how much work was put in to get to that point.


But I also know that without determination and willpower, we wouldn't have got to that point. And even though we're helping put in the work, it's him that's motivating himself to do it. And I could not be more proud of him for that.


Lillian  31:23

A moment that I felt proud of her is every single day. Every single day, she hits milestones at her own pace, and I'm just proud of the little girl that she is.


Loren  31:36

I am so proud of Hana every day, but one time that stands out in particular is when she really stood up for herself at a doctor's appointment. She was only two-and-a-half-years-old, and the doctor was saying like, "Oh, what's probably this and she probably doesn't feel this." And she stopped, and she said, "No, that's not right. This hurts. This is what's happening." And I just was floored, and so was the doctor. And I was just so proud of her for already knowing that she has a voice, and knows how to use it.


Lysa  32:14

She's made so much progress in her gait trainer. At the beginning, I wasn't sure if she would ever take steps without my holding and guiding her. Now she can take a few steps in her gait trainer independently.


Madeleine 32:27

A moment I felt proud of Margo was when I first realized she could see. Margot has cortical visual impairment, and it didn't look like she was responding too much in her environment visually. Every week, in music therapy, we sang the One Little Finger song, and I point my finger. And she never responded. But then, three months in, she pointed her finger. She could see. I was so proud of her little brain for fighting past the seizures and allowing her to process a visual signal.


Megan Schneider  32:56

I feel proud of my daughter every single day, but a big win for us was that she just learned how to roll from her belly back to her back. She has a weak side of her body, so she had to kind of adapt and really persevere to get over that arm. And she's been trying and trying for months. And she finally got it, and now she cannot stop rolling. So, it makes me feel proud to have a daughter who has that fighting spirit, and is persevering past some of the barriers that are in place. And it just it makes me feel very proud of her everyday.


Rachel  33:31

I felt so proud to be her mother this past month at an assembly. She was given a certificate, and the kids cheered so loud for her. It made my heart happy.


Sarah  33:42

I feel so proud of my son for something that he recently accomplished. He is non-ambulatory, and so he gets around and explores mostly through rolling. But recently, he was able to army crawl, essentially. He moved one arm forward, and then the next, and pulled himself across the floor.


And just to sit back, and see the strength and determination that it took for him to just move inches, was something that I'll never forget. He started saying, "Mama, I'm crawling!" And gosh, that was just the best feeling in the world. I'm so proud of what he accomplished there, and I'm looking forward to seeing him make it even farther than next time.


Sophia  34:40

I am proud of Penny every single day. I feel like she goes through so much discomfort and struggle every single day, more than the average person probably will experience in their entire life. And she does it with a smile on her face, some of the time. Most of the time. And she just is so resilient, and it makes me so proud.


Madeline Cheney  35:09

Describe a time you felt proud of yourself as your child's parent.


Abbie 35:15

I felt really proud as his parent every time I stuck up for him. He had a lot of hospital stays, a lot of hospital stays, and a lot of things that were not average, not normal. And it was my job to advocate for him. And I loved telling residents and doctors that what they were doing was wrong, and I always felt so proud of myself when I did that.


Alicia 35:41

I'm very proud to be my child's parent. There was one time when she was getting interviewed for, like, some video core curriculum for a disability foundation, to show in public schools. And they had her describe what disability is. And she said, "Disability is just not giving up." And I'm just really proud of her for saying that because it's so true.


Alison Payne  36:12

The one moment that I felt most proud of myself as a parent was actually her journey into this world. I was told to have a natural vaginal delivery, but I decided to opt for a C-section instead. And I truly believe that that was really a lifesaving thing for her, as even the C-section, really, she struggled and she had a hard time with that.


So, knowing the amount of resistance she could have been up against with having a normal delivery really just gave me that confirmation that I did good as a mom, and it was my first mom experience. And it was incredible. And she's here because of that. I truly, truly believe that.


Andrea Torres 36:58

And the moment when I was proud of myself as Benjamin's mom, was, it's always when I trust my gut. When I feel like there's something going on with him medically, and I listened to that. It literally saved his life. So, I was pretty proud that I didn't let the doctors, that I just didn't listen to them in their lack of concern when I knew that there was more to be concerned about. And I found the answer and saved his life.


Bobbi Ulanicki 37:28

What I think I'm most proud of in myself is that even though it has been very hard, and there are always a million reasons not to do something, I'm very proud of the fact that I've made sure my daughter has as many normal, positive experiences of childhood, whether I have to adapt them to make them safer for her. I don't use her health condition as an excuse, or as a reason not to do these things.


Carolina Quijada 38:05

A time where I felt proud of myself for being Cruz’s mom is honestly finding my voice during this journey. I am an introvert, and I am not the most comfortable speaking up. But I have learned that sometimes that's what my daughter needs; I need to advocate for her. So, I've had to suck it up, and have those sometimes-uncomfortable conversations with therapists or doctors or nurses, if I feel they're not meeting the needs of my child. And I'm proud that I'm able to do that now.


Daniel DeFabio 38:40

Probably the time I felt most proud to be Lucas's dad, or proud of my job as Lucas's dad, was around Halloween - I would build somewhat elaborate cardboard costumes to fit over his wheelchair.


One year was the Batmobile, and we were going down city streets for a Halloween parade. And I heard a dad pass me by and say, "Nice job, dad." And it just really hit me that maybe I was doing something right.


Erica Ryan 39:11

I felt proud of myself for being his parent when I found my voice to speak up, ask questions, push back and really advocate for him.


Jane Denn 39:22

Something that makes my husband and I feel proud of ourselves... I feel like if you ask any parent what their biggest fear is, it's probably something terrible happening to their child. And when something terrible does happen to your child, and you come out on top of it, you realize that you can really handle anything.


My husband John and I had to make really, really difficult immense life-or-death decisions for Georgia. And we did it, and we made the best decisions and we're better partners and better communicators. And I just feel like all that we have come together, it's so great. And it's just such a powerful feeling to know that we have been to hell and back. And we survived. We did it.


Jessica Duffy 40:10

A time that I felt proud of myself as a parent? What comes to mind is just, you know, when you receive the initial diagnosis, and you have these feelings of, "Wow, I don't think that I can adequately care for her. This seems overwhelming, it seems like too much. There's a lot of fear associated with it."


And then just, you know, when we got home from the hospital, and you start caring for her, and you're doing all these things that you were so afraid of, and now you're just doing them well. And your child is improving, and you build this kind of self-confidence, and you're able to find joy and hope again. Really proud of myself for that.


Julianna Morasse 40:48

I've actually felt proud of myself, every single day, I wake up living what was once a nightmare, in my mind, but now it's honestly my greatest joy. And I'm proud of myself, that we've turned these scary, scary situations in our life into the greatest gift. And I'm so proud of us for doing that.


Kahrissa Taylor 41:10

I would say that the moment I felt the proudest is when I followed my gut, and just knew that something was wrong. And despite doctors continuing to tell me that everything looked fine, I kept fighting on and I ended up being right.


And I'm really proud that I continue to push past what doctors were telling me and put forth the effort to kind of figure out exactly what was going on. And I'm just thankful that we have at least a semblance of some answers, even if we're still undiagnosed.


Kari Harbath 41:44

A moment, I have felt most proud of her and a moment I felt most proud of myself are the same. So, not long after Sloan was born, Sloan was on a G-tube when she was born, and then not long after she was born, she moved to eating orally. And she has had several cleft palate surgeries since then. And every cleft palate surgery, I have been told she will not eat orally, we're going to need to do some kind of tube feed to get back on to eating orally, and that there would be a process around that.


But every time, I have said, "Nope. I know that this is one of songs favorite things in the entire world, eating orally. Being completely and profoundly deaf blind, Sloan loves to eat. And so, I want her to have this experience for herself, and also want her to be able to have the routine, waking up, you know, have that comfort."


And so, while I've been told at every surgery that Sloan will not eat orally, the minute she wakes up from surgery, what does she do? She wakes up from surgery, she signs "eat," grabs the bottle and eats.


And it has been my favorite thing every time - now we just know going into a cleft palate surgery that she is going to take the bottle no matter what, after her surgery. But there's always a big moment of pride for myself as a parent who knows exactly what's going to happen, no matter what anyone tells me and pride for her in the fact that she has this routine, this comfort, and can do it all on her own.


Karley Henderson  43:15

I probably feel proud of myself with everything that I've learned to do because of her. I've had to advocate for her so much, and that's something that used to be really hard for me, to speak up. But now, I don't hesitate. It just happens, and it comes out and I am proud of myself for that.


Kathryn  43:36

I am proud of myself for staying grounded. He has had a number of ups and downs in his health, and through it all, I have also taken the time to nourish my own self, my relationships. I take time to exercise, to laugh with friends. I have a career. And it's not always easy to balance all this stuff, I don't have a perfect solution or the perfect answer. But I keep trying. And I know that feeling my own joy will only help me as a mother.


Katie 44:17

Moments where I felt proud of myself as a parent has just been showing up for him. Even when I physically and mentally haven't felt like I've been able to. I still show up because that is what I can do for him. It's hard, but I do it. But I always feel really proud of myself when I look back and say you know what, that was really hard. But I did it. And I'm proud of me for that.


Lillian  44:54

Something I'm proud of myself for as a parent is, Paisley is my granddaughter, and we adopted her this year in August, super proud to say that she's ours because she is medically complex. And she deserves every little piece of love and attention that we can give her. So I am proud that we were able to adopt her and be able to call her ours.


Loren  45:18

A time I felt proud of myself, as Hana's parent, is basically anytime I feel like I found the right words to advocate for her in everyday life, like on the playground, or just in random conversations on the street. So many times, I feel like I didn't quite say the right thing. Or I didn't speak up, or correct something fast enough. But I'm getting better, I almost would say I'm getting good at it. And I really proud of that, and learning how to not be worried about saying the wrong thing. And instead just speaking up for her and modeling that for her.


Lysa  45:59

I'm proud of how I adapted to this new life. It's been difficult for sure, and I grieved a lot. At the same time, I easily ended my career to be a stay at home mom, and embrace this new life. To paraphrase another mom on this podcast, my daughter has an amazing life. And as her mom, I'm proud that I get to be part of her amazing life.


Madeleine parent  46:21

I feel proud of myself every day, between keeping track of her care, medication therapies, spending time with her doing fun things and showing her the world, doing research on her disease, advocating for her and other children with epilepsy. There's so much to do, and I'm always thinking of Margo and how to help her live a happy and full life. Some days I do better than others. But every day, I am proud of myself for doing my best.


Megan Schneider 46:47

I feel proud of myself for taking me time. And what that looks like for me is exercise, whether it's 10 minutes or an hour, I feel that when I have my me time, I have better we time. And I've always kind of used that as my motivator. And my reason is, when I'm better, we're all better. So, to have the strength and the mental capacity to take care of my daughter, I need to take care of myself first. So that's always been very important to me.


Rachel  47:16

When other teachers and loved ones tell me Audrey is joyful from the love I give to her, I feel proud of myself.


Sarah  47:24

I feel proud of myself for honestly, just all of the things that I have mastered over the last few years. If I had been told when I was pregnant with my son that changing out an NG Tube once a month for the first year of his life was something in my near future, or being by his side through seven different surgeries, all these different medical things that diagnoses so rarely that only 50 people in the world have been given the same diagnosis, I would have been like, "You're crazy." And so, just that advocating for the medical part, all of it, I'm proud of.


Sophia 48:08

When Penny was born, my husband and I had to have some very frank conversations about what our life was now going to look like with a child with complex medical needs and a disability. And we promised ourselves then that we would hold each other up when the other person couldn't stand. And we would put our family unit first and support each other.


And I am really proud of us because two years in, we are stronger than ever, and our family dynamic just works. And this is not an easy life, but I'm proud that we have done it together. And we continue to do it together, and we have a really good system. And that's what I'm most proud of.


Madeline Cheney  49:13

If you would like a chance to respond to each of these four questions, head to Instagram to my account @ the_rare_life, where I'll be asking you to answer each one throughout the week via reels, and you can answer them in the comments. And I cannot wait to read through all of your responses.


A huge thank you to each of our participants in this episode: Madeleine, Alison, Sarah, Katie, Brittany, Daniel, Kathryn, Karley, Loren, Carolina, Rachel, Julianna, Carrie, Alicia, Sophia, Jessica, Courtney, Lysa, Abbie, Lillian, Jane, Erica, Andrea, and Bobbi.


Join us next week for a conversation with mom Haley, known on Instagram as Growing Juniper, and mom Madhura as we discussed traumaversies, the anniversaries of difficult or traumatic events relating to our medically complex children. So relatable. Don't miss it. See you then.

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Living with Sleep Deprivation w/ Jill Arneson (Rebroadcast) https://d3ctxlq1ktw2nl.cloudfront.net/staging/2023-5-1/332732190-22050-1-40fed6f439bf6.m4a


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68: Dipping My Toes into Educational Advocacy