Preface: Kimball’s Origin Story and a Little More About TRL

Madeline Cheney

"They had to give him an extra dose of sedation because he was being so feisty and trying to grab everything out. Which is really cute to know."

Well, hey, you're listening to the preface episode for The Rare Life. I'm so glad that you're listening to this. This is a great episode to get started with before you dive into the meat of the podcast. I'm going to cover a few things. I'll cover:

1. who this podcast is for a little more in depth
2. a bit more about the seasonal structure and a few fun facts about my family and me so you can kind of get to know me a little bit before I dive into all the nitty gritty of my experiences with Kimball and other parents as well.
3. And my origin story as I entered the ranks of special needs motherhood which is code for Kimball's pregnancy and birth, really when we found out that he- his body was not forming correctly.

So first of all, with this podcast I keep two groups of people in mind but mainly the first group which is derived from the name of the podcast, parents of children that have rare medical conditions. So this is really who I have in mind while I'm creating episodes and curating different topics for various episodes and different professionals, but it really applies to all parents of children with any kind of special needs or medical conditions or medical complexities. Regardless of how common or rare they are. We talk about rareness, partially because each individual diagnosis when they are rare, are so isolating, and so I mean, special needs parenting is isolating anyway, but it's a new level of isolation. So this is a way for us to band together and create our own big thriving group of everyone who relates with rare. And that brings me to group number two, which I also have in mind, but this is not really created for you, but you can benefit from it. This is for anyone who is curious about what it is like to be a special needs parent. This includes, maybe you have a family member who has a special needs child or a friend with a special needs child. Maybe you just admire special needs parents, which like I don't blame you, because like, we're awesome. Maybe you're a therapist or doctor and you want to hear the other side of the story, you want to learn more about what's on the other side of the mirror. So to all: welcome to The Rare Life.

And now for my explanation about the season structure for the podcast. This was an idea to help add a little more structure to the show because we are so diverse and there's so many different things that we can focus on and talk about. And so each season is four months long, and it just guides the focus of our episodes, especially with the professionals, it really guides who I'm selecting what kind of professionals. So I'm going to give you a little overview for the whole year, we will have these three different season themes. And they will be reoccurring. And so we will go back into them over and over, they'll just kind of be this little loop of themes. So Season 1, which we're just about to kick off is more child centric, it's focused on their medical and therapy, intervention and really a lot about their diagnosis. Season 2 is more about how we have evolved as people in being their parents and going through this journey. And then Season 3 is going to be all about how our relationships and friendships and family situation has evolved and changed. And so in that one, we'll talk a lot about sibling dynamics and marriage, relationships, extended family relationships, and how our friendships have changed. So we will just kind of loop through those over and over. And those are pretty loose themes. Each of those things will come up in each season, we're not going to only focus on on those exclusively, that'd be kind of impossible because they're all so related. But again, it'll just kind of guide our focus. And so next week's episode, Episode 1 is the kickoff to Season 1 and I will give you more of an idea of what to expect in Season 1, it's going to be great.

And that brings us to a little bit about me. I am Madeline. I am from Washington state from the western side, which is the green side where it rains all the time and it has awesome music and hippies and, and it's just great. Lots of camping and hiking. I loved growing up there and it will always have my heart. I currently live in Utah with my husband Juston. He is a techie guy and he is the mastermind behind my website, the rarelifepodcast.com, go check it out. He's awesome. He's so great. We love each other. I am a stay at home mom to two awesome kids. Wendy's our oldest, she is four, and she's spunky, and she's a leader and she is determined. And she's, she's kind of just a mini me. Honestly, we relate a lot. Then there's Kimball who is a little mini me of more of his dad so they connect a lot more. He's soft, in the best way. He's a fighter, but he's soft. And he just has the sweetest little soul. He's so sweet. Oh my gosh. He's amazing. And he also has, he has a lot of birth defects. I'm going to list them out so that you have a little more context for different episodes when I mentioned these things. So Kimball has hearing loss, vision loss. He has an unstable cervical spine. No nasal bone, which he had a feeding tube for. He has dwarfism and low muscle tone. And he's amazing. So I'm gonna go ahead and tell you his origin story, which is his pregnancy and birth.

We knew he was a boy when I was only 13 weeks along. It was kind of just a fluke. The doctor was doing a routine ultrasound and he could see Kimball's male parts. So he told us that he was a boy and we were so excited. Juston and Wendy were both there. That was just a really fun treat. That is a really happy memory that I have of his pregnancy, which his pregnancy was really hard in a lot of other ways as time went on, and we found out that he had issues with his body and that had birth defects. So I really cherish that moment of finding out his gender because it all became more real and like that was my first really intimate connection with him. When we got home, we talked about names and Kimball was on our list. And in fact that night as we were talking about names and about Kimball, I just knew he was Kimball. That was one from our list of probably five or six other boy names. And it hadn't been on the forefront of our mind previously, but once it was just once I knew he was a boy and I was like, he's Kimball, that's who this kid is. So that was that's a special memory.

Fast forward to my 20 week ultrasound, the anatomy scan. I don't think I was really aware that the ultrasound was to check for issues as well as finding out the gender of the baby. I'm sure I knew at some point because when I had Wendy, I remember them telling us Oh, she looks so healthy and her body's doing great after we knew that she was a girl, and it didn't really mean much to me then because I didn't know any different. This time I went alone just with Wendy. Juston didn't come to this appointment where he had been to every other appointment. And that was just because we assumed it would be a really boring appointment, we would just-we'd get to see Kimball, which would be fun. But they would just confirm that he was a boy and how he looks healthy and we would just move right along. Unfortunately, that is not how this ultrasound went. This is when we found out that his body was not forming typically had some major issues. As the ultrasound tech was performing the ultrasound, I remember making small talk with her because that's what I do, especially if I'm kind of nervous. And I was asking her about her job and, about the things she liked about it. And she told me, she worked in the clinic I was in, like, once a week, but the majority of her week, she worked at a high risk clinic in Salt Lake. And I was like, Oh, that must be a sad, hard job to you know, work with babies that are struggling and she's like, Oh, it's fine. I was like, it's not hard to like, be the one to tell parents that something's wrong? She was like, it's not me. The doctor tells them. I was like, Okay... and so we just kind of had this awkward silence. As she checked Kimball, I remember seeing him on the screen and thinking it was a little odd that she kept measuring and re measuring and re measuring his limbs when she had his profile on the screen. She sat there for a while. And it was just really quiet. I, I don't think I really thought anything was wrong at that point. But I remember noticing that, like, we're not really talking about how exciting it is and the mood in the room was solemn. And looking back and realizing she saw that there were big issues and concerns and she's not supposed to say anything as just an ultrasound technician. That's the doctors job to analyze the measurements and the sonogram photographs. And so she said, our doctor would talk to us about the results. And that was about it. And then we left, just Wendy and I and we went into the doctor's office and after a few minutes, our doctor came in. And at this point, he was a new doctor and I didn't feel like he was like, super exceptional at his job as a doctor, but I remember that he was very kind and sensitive. And looking back, I'm really grateful that he had those qualities because he was the one to deliver the news that Kimball wouldn't be a typical baby and that his body had issues.

So he came in, and he was very solemn. And he said, We need to talk. And my heart started racing. And I was like, What? This isn't good. He said, we're not sure yet. But it looks like your baby has down syndrome. And those words, changed my life. Obviously, he had birth defects forming far before we got the news. But that moment when he said those words, to me marks the beginning of our life with Kimball and the struggles as well as the ups and the thrilling moments but it really was the beginning, I think, of the hard parts especially. And my heart just broke right then and I felt fear and just total loss of control of my situation. It just felt like all of a sudden I was a part of this big scary story and I didn't know how it would turn out and I didn't know what was going on. And I remember very distinctly that Wendy opened the biohazard trashcan and dropped her snack container in the biohazard trashcan. And I remember looking at her and thinking, I am so at a loss and I just felt so overwhelmed and like my life was just grabbed from me and all my control over it. And he talked about doing different tests and blood tests to confirm or rule out down syndrome and he said that Kimball's limbs were measuring small, it's referred to as short, long bones just means the arms and the legs were shorter than they should be for his gestational age. And he had no nose bone that they could find. And those are things that are fairly typical in children with Down syndrome. So those were the red flags that made them suspect Down syndrome, as well as the sheer frequency of Down syndrome because that is not very uncommon in the world of birth defects. And so I think that even just that right there was one of the reasons that that was one of the conclusions they jumped to as a possibility. So, as we walked out of the doctor's office, the nurses and the different assistants, I remember them looking at us, I could just tell that they knew what he had just told us and the looks on their faces. They looked so pitying of me, and I didn't like that. I didn't like the feeling that I was this victim that everyone felt sorry for. We went down the elevator and start buckling in Wendy and I just lost control and I just started sobbing. I was so afraid and just so overwhelmed and so sad. So heartbroken. And I feel guilt confessing that now. Because I think that we have this expectation as parents of special needs children or children that are not typical in some way or another, to be very accepting and loving and grateful for their different capabilities and different abilities. But I was sad, I was really heartbroken. And I think I've come a long way from there were at this point as Kimball's turning two, I see Kimball, I don't see this broken body anymore. And I'm able to, instead of separating the two, I'm able to just mesh the two, we're like It's Kimball. I love Kimball and Kimball is so sweet and he's awesome. And our family would not be the same without him and I would not be the same without him. So at this point, I think back about that time, I feel joyful. And I feel excited for myself. It's like, as if I'm this third person watching a little, little fly on the wall or something, and just thinking, it'll be okay. You're gonna love him. It'll all work out. But boy, it's gonna be hard. And so I saw as I got in the car, I was just sobbing, and I called Juston and I feel really bad that he found out over the phone. But I told him through sobs, they think our baby has Down syndrome. And he told me, he had initially thought that we'd lost him. Because when he answered the phone, and he could just hear me sobbing on the other side. And later, we talked about how, as we just let the news just sweep over us and continue to register, we both agreed that we were like, this would just be easier if I had just miscarried. Then we could have grieved him, and then move on, and then had a baby that wouldn't have these lifelong struggles, because at this point, we were researching and talking to other people with children with Down syndrome. And it became very clear that we would likely care for him until the day we died. And that we wouldn't have- we wouldn't be empty nesters... It was this lifelong sentence, it felt like at that time, that our lives would never be the same. And all these dreams and expectations we had for our lives were suddenly gone. And we were grieving the life we thought we would have. And so we both confess that we had wished that he-- we didn't wish that he had miscarried. We both agreed that it would have been easier. It would have been devastating to accept it and then we could have moved on and I'm not sure at this point. I don't know. I don't know that that would have been easier, and especially in hindsight knowing Kimball and I'm so grateful that I didn't miscarry that that wasn't the bad news I had, because we love him so much. He's so worth all the anguish and pain and suffering that as a family all of us have experienced because of his his struggles physically and medically. We thought that he had Down syndrome for one week until the blood test results came back negative for Down syndrome. So that right there was really just very telling of the rest of our experience with Kimball and our journey. It was such a roller coaster. One very terrifying roller coaster. And so after that week, the week felt so long. It is so weird to me that that was only a week. We did the researching. I had already joined a flourishing Facebook support group for parents have children with Down syndrome and I was I was really starting to accept it. I was like, these kids are so adorable. There is so much known about Down syndrome. I felt like there was this real support system existing for us. And I even had a friend with a son with down syndrome. And she had talked to me during that week and she told me how he would be such a blessing to our lives and to everyone who knew him and how these children are just so sweet and loving. And after talking to her, I had my first little tiny feelings of excitement, but they were there. So when we found out he didn't have Down syndrome, it was very confusing. So as we were sent to the high risk office that that ultrasound tech worked at, it is interesting how I feel like that was very foreshadowed for me, but we were there and our high risk doctor there was saying it seems like he must have something very rare because it's not coming up on any of these tests.

So we were sent to another clinic for skeletal dysplasia, which is what he really does have that was an accurate diagnosis. That's an umbrella term, skeletal dysplasia. There are 7000 different kinds of skeletal dysplasia. So it didn't tell us much, except that it was an issue of bones, which was clear has his arms and legs continued to be short for his gestation. And he continued to not have a nose bone. And we just went between a lot of emotions during the remaining time of my pregnancy with him, where we went between thinking, Oh, he'll just look different. That'll be his only challenge. Because we're like, well, if he only has a different looking nose, and he's short, like, I guess our biggest challenge will be helping him feel confident. And I realized how naive that was. And we went between that and then there were points in our pregnancy where she told us that he might die. Like they didn't know that he would live and it was uncertain because of his airway and his neck may not be stable, which turns out it wasn't.

And so it was just a really rough pregnancy. We went in to these clinics in Salt Lake for ultrasounds, constantly. I mean, we were seeing thing every week for a lot of it. And so we were really monitored, and they just kept measuring and re measuring. And I even had a lot of excess amniotic fluid, which can put you into preterm labor, because your body thinks that your baby's big enough. And so, we had that fear as well. And it was really hard not knowing what to expect. We asked the doctor but what is it gonna be like, what is he gonna be like? What kind of difficulties will he have? And she just kept telling us, we just don't know, we don't know enough. And so she didn't tell us anything and I'm a little resentful, because I get not wanting to give misinformation. But even a spectrum would have been really nice because we went into it not knowing hardly anything, we knew the possibility of him having an unstable cervical spine, which I'll explain really quick. That is when the vertebrae and your cervical spine are not hardened, they're still cartilage. And that's the area of your spine that protects your spinal cord from compression, which is basically it getting pinched or damaged, which is really bad. That's typically what happens when someone has a neck injury. And so it causes either paralysis or death. And so that was a really scary thing to have on the table where they said that it may or may not be this way we can't tell through ultrasound.

And we also knew that his nose bone was not there. And so we met with his ENT doctor and He explained that there's no way to know how narrow the nasal airway is before they're born. But that when he was going to be born, that they would have the NICU ready, so they could intubate him and give them air and help him breathe. And that if worse came to worse, they would have to give them a trach which is a surgical opening in the neck that helps them breathe, it kind of bypasses your mouth or your nose for air, which actually a lot of kids with his specific diagnosis do have traches. And I'm very grateful that he didn't need one because it adds a lot of complications to care and to life. So we knew those things. But we didn't know a lot of the things that he ended up having a lot of the birth defects and struggles.

And our doctor told us that we could do a C section and that that might make safer or might not she was very neutral. She said, it's up to us if we want to do a C section or vaginal birth. But there's no research, which is very typical of these rare diagnoses, we run into that a lot, I think where there's just either very little or no research. And so you're making these decisions based on other maybe similar situations or your gut, or doctor's guesses, but you all are just kind of guessing as you go along what is best for this child. And so Juston and I, we had a week to decide if we wanted to schedule a C section or do a vaginal birth. And that decision, I mean, that was really hard to feel this huge decision placed on my shoulders that may or may not affect the likelihood of him living. I just wanted the doctors to tell me what was best. And I also really didn't want to do a c- section, I've heard enough stories about that. But I, I definitely didn't want that. But I was willing to if it were better for him, and if it increased the likelihood of him living. And Juston and I are religious, and so there was a lot of prayer involved. And we came to the conclusion that we would do a vaginal birth. And so we did. And now I'm a part of this Facebook support group for parents of kids that have his specific condition, which is amazing. There are only 125 cases worldwide with his specific diagnosis and so I've seen on there since then that I think I am the only one that knew he had this syndrome beforehand and still went ahead with a vaginal birth everyone was saying they had c sections and so that makes me like kind of afraid when I remember that like Oh my gosh, I'm so grateful that everything worked out. And not only that, but he does have an unstable cervical spine. And so if he comes into flexion, which just means that his chin comes down to his chest in that position, they can tell through X ray, that his cervical spine is in danger of compression. And so the fact that we were able to have a vaginal birth without him having any damage to the cervical spine is really a miracle. And I'm so grateful.

I was induced so that the special doctor could be there to deliver him which she was not there for because the induction went so well and so fast that she was at a different section of the hospital and didn't make it in time. And so I don't even know who delivered Kimball, it was a room full of frantic nurses and on call doctors, but anyway, they were giving me my epidural, but it wasn't completely done yet when he started crowning they had to pull out the needle and I just delivered him within the next minute. And so in hindsight, it is cool to think about like, I wonder if the epidural would have slowed it down to a rate that would have been more dangerous for him. There's a lot of moving parts and so I'm just really grateful that he, he was safe through his delivery.

 And so they after I delivered him, they showed me him and then tossed him into the drive thru window which is... in hospitals, they have a labor and delivery room or two that have these windows. They really are a drive thru window that I'm pretty sure that they might buy them the same places, I don't know. But they open the window and then on the other side of the window is the NICU and so we had already planned on delivering in that room. I think it was like a delivery room eight or something. And so they showed me and then fed him right through the window and I had been prepared for that. They told me I wouldn't be able hold him and that they would whisk him off so they could stabilize him and help him breathe. And I was really dreading that understandably. Wendy, my four year old, is so typical. And so I had the experience of a normal delivery where they just laid her on my chest and I just got to hold her and, and bask in that new moment with a baby. But it was okay. I was okay. And I was surprised actually at how okay, I was. And Juston stayed with me while I was sewn up, and then he was able to go into the NICU with Kimball to be there with him. I wasn't allowed to get up yet because I had just delivered.

So he rushed in there and with his mom so she could help support him. And so they were in there while they intubated him and had to give them an extra dose of sedation because he was being so feisty and trying to grab everything out and which is really cute to know. And so I was alone in the room with the nurse who is charting. I remember sitting there thinking, whoa, I just did that, especially because it happened to so suddenly where all of a sudden, he was there and I delivered him and then he was gone. And I was like, I did it. And I was so excited that that part was over because I was pretty nervous. And I felt so much peace. I felt I didn't feel alone, I felt so strong. And it really was a really tender experience. It's a happy memory for me, which is completely crazy because I didn't have my baby. He was in a different room being taken care of and it was scary and I didn't know if he'd make it but I was totally okay. And after 30 minutes or so Juston came back in and he showed me a picture of our son. So I like-- I'd seen I saw him very briefly as they held him up and then tossed him through window. And so it was really a unique experience to like look at his phone and see a picture of our baby and kind of take in all the details. And he was laying there completely out because he was sedated and his little limbs were like, sprawled out and his little tongue, I think was even out a little bit. And it was so cute. He had all this blonde curly hair. And he had all these tubes going in his mouth and just all over the place. And it was such a happy moment to look at that picture and know he was okay. And although it was a different experience than I had with Wendy, of having my baby placed on my chest, it was still a very tender experience. And I felt all the same love and all the same protectiveness and the same joy. In fact, arguably more because of how much pain was also involved emotionally, I just felt so excited to see him and I was able to be wheeled in there to go meet my son for the first time in the NICU. And I was so happy. I was proud of myself. And I was excited that we had this new child. And I just loved how, although he had all these struggles and things that were scary, that I still had all of those motherly feelings and emotions. And I was really grateful for that because I don't think that's necessarily a given when there are so many scary unknowns with children that have various issues with their bodies. That is just a memory that I really cherish. And I am so honored that we are celebrating his second birthday with him.

All right, I hope you guys enjoyed the origin story! Next week, like I mentioned, it is Season 1 kickoff. It's officially episode 1. In that, I will explain more about Season 1 and what you can expect and a few sneak peeks into what exactly we'll be talking about. It's gonna be awesome. See you there.