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Babes in Bookland
A podcast celebrating women's memoirs, one story at a time!
Babes in Bookland
The Immeasurable Worth of Every Life // Heather Lanier's "Raising a Rare Girl"
What makes a life valuable?
When Heather Lanier's daughter was born with Wolf-Hirschhorn Syndrome (WHS)-- a rare condition affecting just 1 in 50,000 births-- she was forced to confront just how deeply our society ranks human worth based on "normalcy". My cousin, Kimmy, joins me to share her parallel journey raising a daughter with septo-optic dysplasia (SOD) and how it mirrors Heather’s powerful and moving memoir.
Join us as we dive into the raw reality of hearing doctors casually deliver life-altering diagnoses before switching to weekend plans, the crushing weight of being asked if you took drugs during pregnancy when your baby isn't "perfect," and the constant battle for resources that should be basic rights. Kimmy's experience moving from a small town to access better services for her daughter highlights the geographical lottery of disability support in America.
The conversation takes a powerful turn toward current politics when Kimmy articulates how budget cuts and attacks on diversity initiatives directly threaten children like hers. "80% of the visually impaired community is unemployed because we've been lacking in our support and inclusion," she reveals, challenging the notion that eliminating DEI somehow benefits society.
Both mothers reject the idea that their daughters exist to teach others gratitude or perspective. Instead, they celebrate their children's determination, joy, and inherent worth. In her memoir, Heather writes, "I had to die to some version of myself, the desperate, clinging, distraught version who wanted what her child was not."
Whether you're a parent navigating special needs, someone curious about disability perspectives, or simply seeking to expand your understanding of human diversity, this episode offers profound insights that will transform how you see value, ability, and the unexpected paths that sometimes lead to our greatest growth. This episode will make you question what you've been conditioned to value and why—and whether we're creating a world that truly welcomes everyone.
Have you read “Raising a Rare Girl"? Share your thoughts with us! We'd love to hear which parts of Heather and Kimmy's journeys resonated most with you! Connect with us @babesinbooklandpod or email babesinbooklandpodcast@gmail.com.
If you leave a kind review, I might read it at top of show!
Buy “Raising a Rare Girl” by Heather Lanier
Transcripts are available through Apple’s podcast app—they may not be perfect, but relying on them allows me to dedicate more time to the show! If you’re interested in being a transcript angel, let me know.
This episode is produced, recorded, and edited by me.
Theme song by Devin Kennedy
Special thanks to my dear friend, Kimmy. I’ve always been in awe of your strength and determination. Xx, Alex
Hi, welcome to another episode of Babes in Bookland. I'm your host, alex Franca, and today it's kind of special for me because it's my friend and my cousin Kimmy is joining me to discuss Raising a Rare Girl by Heather Lanier. But before we get to the episode, here's a review from Sandy on Apple Podcasts. Having a podcast that discusses books that will make you question, realize or reflect is always appreciated. A space where girlies can listen to those who share their opinion or introduce them to something new is something I will always support. So happy I found this podcast. Virtual cool clubs Yay, thanks, sandy. We're so happy you found this podcast too. And you know what I think this is going to be a good episode for some good reflections. Let's get to it. Hi Kimmy, hi Al, this is so exciting that you're here. It is so good to see you on Zoom. We haven't been in the same place since our grandmother's funeral, and before that it was many years and we were like thick as thieves growing up.
Speaker 2:I know I hold on to that, those memories that they just keep you close for sure, no matter how far we are.
Speaker 1:I completely agree, and it's just really special for me to have you here. So thank you, thank you, thank you, okay. Raising a rare girl. What were your thoughts?
Speaker 2:I thought it was amazing. I thought it was so powerful and also a mirror, honestly, and I had never really read a memoir like this. Just so you know the first half of the book, I could relate to so much of it, the very beginning, and all the surprise and the adjustment and the grief that you go through. It's just. It was so palpable and so relatable. You was almost to look back, turn the clock back 10 years and to really remember myself in that spot.
Speaker 1:Yeah, good, I was hoping that you would connect with it. Did you feel a little bit more seen, a little bit more understood than you did before you read the book? Yeah, I sure did. I thought that this memoir was incredibly moving and eye-opening.
Speaker 1:She marries her personal experience giving birth to and raising a daughter born with a very rare genetic disease Wolf-Hirschhorn syndrome WHS is what we'll continue to call it throughout the episode. It's very rare One in 50,000 children are born with it, and Heather writes that your odds of becoming a pro athlete are twice as good as your odds of having WHS. So just to really like show you how rare it is. So it's a genetic disorder and it's caused by a deletion or missing piece of chromosome four. And she's got all these cited excerpts from various articles and essays and books and I always appreciate a good source and she uses these to compel us to reflect on our own thoughts and feelings about rare bodied people that's the term that she uses to describe people with disabilities, physical or cognitive. She's so honest about her struggles with her guilt, her grief, like you mentioned, her envy, and implores us to rethink how we place value on human life. Should we only strive for a society full of perfection or normalcy, or should we love and accept people as they exist? And I feel like this is a very topical discussion. Really excited that we're getting into this today. Me, too, super excited. Let's do it.
Speaker 1:It was published in 2020, and this is Heather's dedication to J, f and P, without whom I'd be stuck in a much smaller version of myself. I'm getting chills rereading that. When I first read that dedication, I was like holy crap. That is such a beautiful way to describe any relationship coming into your life. But the change that I think we go through as mothers expands you and I just love that. A much smaller version of myself I just, heather, I fucking love that, thank you. Smaller version of myself Heather, I fucking love that, thank you. Okay, so we always start with some quick topics. Tell our listeners about you and about your kids, their ages, and tell them about why you connected so deeply with this book.
Speaker 2:Well, I am a mother of three. I have three kids, 14. My son is 13, and the little sister is two and a half. So the older two are in middle school and at that age where they're starting to think about what they want to do and who they want to be. And little sister is such a fun addition to the family dynamic and intense personality.
Speaker 1:Since the very beginning and it's really cool because Kimmy and I are like a month and a half apart and she was pregnant with her third and I was pregnant with my second and they are kind of like a month and a half apart. So that is like really trippy, how family is cyclical like that.
Speaker 2:Yes, I love that, and I loved getting to see you during that time too, when we were growing them and getting to spend that little bit of time together.
Speaker 1:Yeah, we were like checking in with each other and you other and all that fun stuff which is just always good. So tell us about your eldest daughter, your 14 year old my daughter is diagnosed with something called septo-optic dysplasia.
Speaker 2:Sod is what we refer to it. It's a rare congenital condition that affects the development of the brain and the eyes, and it's characterized by a combination of abnormalities that impact the optic nerves, the midline of the brain, and it can include the pituitary gland. Symptoms can range from vision problems, hormonal imbalances causing growth or developmental delays, seizures, motor difficulties, behavioral issues. Since it's a rare and complex disorder hers is one in 10,000 births the care of the individuals with SOD often requires a team of specialists, including pediatricians, endocrinologists, neurologists. Often requires a team of specialists, including pediatricians, endocrinologists, neurologists, ophthalmologists. Symptoms specific to my daughter is that she is completely blind in her right eye. She has reduced vision in her left eye she's about 2,800 and she has a limited field of vision also in that left eye. So an MRI scan showed missing gray matter in the midline of her brain. She is diagnosed with autism spectrum sensory processing disorder, but she grows well. She's incredibly strong and healthy and thriving and adapting her vision to the world around her.
Speaker 1:And I want to say she is turning into a fierce young woman, because we asked if we could use her name and she said no. She drew a hard line there and I respect that and we will respect that.
Speaker 1:I love it. Okay, so we will learn more about my cousin Kimmy's beautiful family as we dive deeper into the episode. And for our next quick topic, in one section, heather writes about how, during a series of testing, a nurse is trying to find her daughter Fiona's urethra for a catheter and Fiona is small. This is a symptom of her syndrome and Fiona is screaming in pain as the nurse tries again and again. Heather writes when the hairdresser's blow dryer's too hot, I don't tell her. When the dental hygienist pokes bloody patches into my gums, I don't relay discomfort. Be convenient, don't let your pain become a problem for other people. I don't know exactly where I learned this, but it's an expectation plenty of women internalize. Yet at this moment she writes as she yells at the nurse Get somebody else. But at this moment she writes that she yells at the nurse get somebody else. Quote mothering Fiona was turning me into a different kind of woman. How have your kids turned you into a different kind of woman?
Speaker 2:I related to this moment in her story so intensely. You know, of course our children change us. They teach us to be more patient and selfless present. But mothering a child with a disability cracks you wide open. You know rearing children already blows through the illusion of control. But throw in a medical diagnosis and suddenly fear is always on your mind, fear of the unknown, fear of the future, fear of the worst case scenario. You know it's an intense place to be and I feel like my fight or flight mode was always on in those early days. You know pleasantry and people pleasing can really go out the door when you're searching for medical answers and medical support for the quality of life for your child. You know I was young, I was just leaving a really combative childhood and I was ready to fight whoever I needed to, you know, to get what I needed for my child.
Speaker 2:So I was incredibly, I related to that incredibly, you know, if that person wasn't on for today, okay, next person on to the next, you know, thank you.
Speaker 1:Next, we're getting this done. That's right. The least painful way possible, you know, for the children, for the baby, quality of life, that's right. As we go deeper into the episode, we will continue to draw parallels between your experience and Heather's experience, those initial moments of discovery, fear. So let's get to it. Okay, I'm ready. Heather writes about the various fates and philosophies that she grew up with and continues to be curious about, and she reflects on how they have shaped her, the way that she moves through her life, the way that she views herself and the world around her, and I really loved reading all of her musings and was really struck by her ability to be curious about something without judgment.
Speaker 2:I love the relationship that her husband had with religion. So much grace and so much you know, room and space to to really care and support for her. I thought it was a beautiful their relationship with religion in in you know more so the searching to live an enlightened life. You know he saw so much enlightenment in in his. He was able to see that in his daughter.
Speaker 1:Yeah.
Speaker 2:I just thought that was beautiful. You know, she kind of talks about especially we get down into it soon about her parents' belief, and I just think it kind of shows our short-sightedness as humans that we limit our God to something that we can understand and we can explain away. You know, why are we given disabilities, why we're given struggles? You know that every up and down is a petty punishment or a small gift from the divine. You know, I think we're all our own main character.
Speaker 1:There is something calming about this idea, right, that everything is out of your control. But then, like, what's the point? It's kind of how I feel about it, you know, and I I've, I think I probably do talk about this, but, like, I've always hated the sentiment when people are just like, well, God wouldn't give you more than you can handle, and it's like, well, but people die all the time of like cancer All the time. I don't think that's how it works. Yeah, not at all, Not at all. Her father under his household. When she was younger, her parents were together and under his household. She was a fundamentalist Christian, so that kind of means that her salvation hinged upon accepting Jesus into her heart. Although her father was a horrible person she writes about how he would watch her undress at night. Fortunately, her mother makes the very difficult decision in the community and faith part to divorce Heather's biological father. Heather feels relief from the chains of her Baptist upbringing. How was faith utilized and was it weaponized in your household? Oh, it's weaponized totally.
Speaker 2:They taught directly from the Bible. So I think a lot of fundamentalism there, a lot of I can just remember. I mean I spent a ton of time with my dad working and sitting in the in the truck and this was the nineties, where I mean we didn't have iPads or anything to keep us busy, it was just hours hours long in that truck.
Speaker 2:You know days enlisted in nineties, country music and I, you know, when I was young, we went to church every Sunday and we went to, you know, bible study every Wednesday, but my parents yelled at each other the entire way to church and the entire way home from church, you know, and every day was a battle and it very, very it fell short, constantly fell short, and I feel like it would have been a more realistic and a more healthier upbringing to just admit those faults of of we. We try and we try again, we try harder, we learn our lessons. We are, we try to be good people, not, you know, these are the rules and you broke them and you're a bad person.
Speaker 1:Yeah, you know, yeah, yeah, being raised in that environment, it's confusing, right, because you're being told one thing but you're being shown another, and then you're being told do as I say, not as I do, but yet you're soaking in so many things that aren't being said that I think a lot of us are just kind of like reflecting on a better way forward and feel a lot less guilt.
Speaker 2:I don't feel guilty at all. I don't feel I don't teach guilt to my children or use shame as a you know, a behavioral tactic.
Speaker 1:Yeah, okay, let's get back to Heather talking about healing some family lines. Great transition, thanks, kimmy. So her stepfather comes into her life and he heals a lot of things, but he also has some interesting beliefs. She writes he believed in an invisible energy that entered into each of us and extended out to all of us. He believed our thoughts affected this energy, which then responded by giving us what we thought about. Our minds could shape our realities. Basically, quote if you believe things badly enough, you can make them happen. So this was decades before the secret became a phenomenon, right?
Speaker 1:She writes my parents, both subscribed to the philosophy, and parents. She recognizes her stepfather as her parent. So when she writes my parents, that's who we're talking about. My parents, both subscribed to the philosophy that thoughts made things. Whatever you wanted you could get by thinking positively. If you weren't getting what you wanted, you weren't being a good enough steward of your mind.
Speaker 1:But unfortunately it gets really tricky. As Heather tells us, my parents' belief in the mind-body connection sometimes means that they unintentionally blamed me when I caught cold and flus. There's this book that she writes about her parents, turning to a guide for determining the mental causes of the physical ailments. She writes if I developed a case of cyanitis, we went to the book. Sinus problems, Irritation to one person, someone close, who was I annoyed with. I sometimes got bronchitis, lungs, depression, grief, not feeling worthy of living life fully. What was wrong? Was I depressed? If in my mother's former fundamental Christianity, sin was the cause of depression, then in our new age religion, depression caused a sin of the body, illness. Both religions, I realize now, attempted to explain suffering by finding blame with the afflicted, and this is a big theme throughout Heather's book.
Speaker 1:Heather continues you will find entries for coughs, cramps and Crohn's. You will not, however, find an entry for chromosomal anomalies. Like I said earlier, her stepfather actually ends up dying of cancer. He does pursue a conventional treatment at first, but then he ends up going to a new naturopath. And well, her stepfather's quote unquote woo-woo methods of positive thinking hadn't healed him. Heather once again breaks up with the belief system that she could no longer reconcile with. These ideas are triggered, though, much later when Heather is pregnant. She writes, the belief that I was entirely responsible for my wellness. Only now I had my baby's wellness too, and we will get into that a little bit more. But first let's talk about her husband, justin. We brought him up earlier. She writes in the two traditions he's loved contemplative Christianity and Zen Buddhism. My husband has spent thousands of hours letting things go. How good are you at letting?
Speaker 2:things go. Oh my God, I feel like I'm not like. I feel like I can be obsessive. You know I'm better now, 14 years later. I think it taking a breath between event and solution. You know, when I was a lot younger, it was very overwhelming of we needed an answer now or we needed to figure this out as soon as possible. It was detrimental, you know, to our, to her future. You know, now I can take a step back. I know that we will do the work. I know that we will find the answer. You know, I think the latest White Lotus, you know that finale, how you know we begin it began with the Buddhists talking about how our quest for resolution in the unknown is causing, is the cause of our suffering. You know, and ain't that the truth?
Speaker 1:Yeah, no, it's true, and thank you for bringing such a wonderful pop culture reference to the show White Lotus.
Speaker 2:I loved them. I loved the Ratliff family. I could not get enough. It was so twisted.
Speaker 1:So good. So in quite a few of the memoirs Buddhism gets brought up and Pema Chodron gets brought up. She's a Buddhist nun. I think it's such a lovely philosophy. Religion seems like such a lovely way to live life. I'm Buddhist curious If your son is Christian curious, I'm Buddhist curious. And I feel like I need to go down that path a little bit more. And yeah, I love things like White Lotus, kind of just bringing some of these ideas to the mainstream, maybe to certain people who would never get exposed to this idea before.
Speaker 1:I'm the same. I'm a Scorpio, which, like I actually don't really subscribe to too much of like. Scorpios hold grudges. I do hold me some grudges, so I'm working on letting things go. You know what I'm letting go right now, what my idea of success is and what my idea of a successful life is. That's something that I'm working on. Wow, yeah, it's hard when you've thought of something, one way, for so long, you know, yep.
Speaker 2:I love that, no, to think about that. And in the success of like right but mother's having it all, and if we are so highly successful in in it's just pieces of the puzzle, right motherhood, and in our career and like there's just, you know, maybe we're 40 here and like 40 here and it makes up this, this much of our life, because there's not that much of us to go around right and just highly successful in all of these areas. We have to share ourselves a little bit, I think. I think that's hard, it hard.
Speaker 1:It's a constant weighing every day. Okay, so back to Heather. Right after Fiona's birth, Justin is ordained as an Episcopal priest. Their church was more progressive. It ordained women. Married gay couples didn't require celibacy, but it matched that traditional thing that he loved about Roman Catholicism. He saw this was his path forward. So throughout the memoir Heather writes about the ways that Justin parallels his faith journey to their experiences and you kind of brought that up to how he just saw his daughter for who she was, instead of like who the world seemed to like need her to be.
Speaker 1:Yes, yes, Talk about the perfect partner. Yes, it was lovely to read about their relationship. He just seems so at peace and grounded, offering a great shelter for Heather as she really struggles with her daughter's diagnosis and the little value that the world appears to put on her life. So we'll sprinkle in some of these moments as we discuss further. And I also love she writes that he taught her again and again that quote laughter was a spiritual practice. What are your thoughts on that phrase? Because I loved that. I love that so much.
Speaker 2:I believe that wholeheartedly. I feel the closest to God when I'm with my nuclear family, when we're enjoying the sunshine in the backyard with a cold drink, when we play music and cook meals together. I heard one time that a happy family is an early heaven and that just really stuck with me.
Speaker 1:There are several times when I'm holding my clean baby, I'm rocking her to sleep and I just think this is heaven it's got to be. She capitalized super baby. Heather writes about the various ways that she already felt pressure to do all the right things so that her baby would be perfect. While she was pregnant, she gave up wheat. She writes that she's unsure why. She's just like I remember giving that up and I was like, oh OK, I would not, I only ate bread towards the end of my pregnancy oh yeah, it was every day.
Speaker 1:She only slept on her left side because it was better for her circulation and the babies that one hit with me. I tried very hard to only sleep on my left side. Heather writes about listening to HypnoBabies, a natural birthing program that guides you through self-hypnosis to have a pain-free, medicine-free birth. To quote create the reality she wanted, which a pain-free birth and a perfect child was the reality she wanted. And remember, she has her old views of that mind-body connection. So she writes I suspect my old views were activated largely by the culture of pregnancy itself. Once our pee contains enough HCP to make a plus sign on a stick, women are advised on every single lifestyle choice. And ain't that the truth? Okay, so you've had three babies, have you had three?
Speaker 2:pregnancies I've had four. Actually, I had an ectopic pregnancy in 2014.
Speaker 1:I'm so sorry about your ectopic pregnancy. It's okay. Did you end up needing surgery? I did.
Speaker 2:I had a ultrasound that showed internal bleeding. I was in a lot of pain. It was on New Year's Eve, 2013. And I waited. I was in pain for like two days. I waited so that I didn't have to go to the ER, so that I could wait till the offices opened on Monday. So on the first that's. That's kind of dangerous. I mean, I didn't know what was going on. I thought it was a cyst. I thought I'd had a cyst before.
Speaker 1:You hadn't tested positive for pregnancy. No, no, I was not trying to be pregnant I was.
Speaker 2:I had an IUD and that's yeah, so they say that there's an increased risk, and that's what happened. I had an IUD and I totally did not expect to be pregnant, but I had. I was in a lot of pain and the ultrasound showed that not only wasn't an ectopic, but that I was internally bleeding. Oh my God.
Speaker 1:Yeah so.
Speaker 2:I rushed to the ER and luckily this is the time where the laws weren't as restrictive. I cannot imagine going through it now. I remember laying on the table being incredibly scared, asking Imagine going through it now. I remember laying on the table being incredibly scared, asking the nurse. You know what, what? What am I looking at here? You know I had, I had a two-year-old and a four-year-old at home. They need it, they need me and there's nothing scarier than you know these complications not sending me back home to them. So I think the topic of you know, abortion as healthcare. I mourned that, that potential child for about a week because it wasn't expected. It wasn't that they weren't wanted, but it was this little what could have been. But I was so thankful to come back home to my babies, which was the important thing. I was so young when I had the first two.
Speaker 1:Yeah. So tell us about those pregnancies, the difference between the first two. Like you said, you were young, you were you. What were you? 22 when you were pregnant with your eldest?
Speaker 2:I turned 22 when I had my eldest and then 23 when I had her brother, you know, so very young back to back. And not only that, but we had we found out her diagnosis before the second one came, you know. So I have a toddler and a baby. Pregnancies were all you know. I was very sick with my girl. Babies, I mean, threw up for six plus months, had morning sickness throughout the entire time. I found that. I thought it was so interesting. With my son it was the regular six to 12 weeks. You know, you're kind of sick and then you move, you're moving on.
Speaker 1:You know much easier, and were you really strict about what you ate? Did you? Did you avoid all the normal stuff?
Speaker 2:Yes, I was young and healthy and very thankful for that, very thankful for very uncomplicated pregnancies.
Speaker 1:Yeah, and then when you decided to have your third you know this was a decade later how was that different in your body?
Speaker 2:I was viscerally reminded of how I carry girls. You know, I was so so incredibly sick.
Speaker 2:Yes, yes, these girls that are trying me from the very first moment. It was wonderful. I definitely re-appreciated it. As you know, this could be my last time. I kind of got that chance to, you know, back-to-back pregnancies when I was younger, you know, you just kind of want to get through it. And then this one I was able to slow down and really enjoy, you know, that time with her and with our family of four transitioning into a family of five. That was a really sweet transition, bringing her into the dynamic.
Speaker 1:That is so sweet. And speaking of sweet things, let's talk about Fiona Heather's child. Her daughter was born in a warm hospital tub after 36 hours of labor. How were your birth experiences? I love giving birth.
Speaker 2:I love that for you, just the whole. I mean, you know it's painful, the contractions, but I just find the whole process so incredibly magical, like there's nothing like those first moments with your baby, there's nothing like those first few days with your new baby. Birth is the most amazing thing I have ever experienced in my entire life.
Speaker 1:Did you have medicine-free birth?
Speaker 2:Oh no no, I was induced with all three kit babies, so I never started contractions on my own. My body was never able to cope with those natural endorphins. I was Pitocin, all three of them.
Speaker 1:Girl, me too. Well, I mean, my second was a C-section. I wonder if that's a family genetic thing, I wonder.
Speaker 2:Wow, that's crazy. My oldest birth experience was different than all of the rest of them. She was, you know, she was my first. I was very young. I don't think that my OBGYN liked me very much.
Speaker 1:Oh no.
Speaker 2:Yes, I felt pretty. I felt pretty judged by her for being such a young mother and at the time, you know I was, I had a boyfriend but not, you know, a husband, and that's shitty. It was shitty. And now you know, now that I'm older, and even the next pregnancy I just I would never would have allowed someone to treat me that way. Now I would have found another doctor, I would have. But this was all very just kind of done for my doctor was found for me and it's just kind of like this is where you go. I didn't realize I had options, you know. So the 36 week anatomy scan she didn't do till 39 weeks and I don't think she looked at it till 41 weeks because I was brought in at 41 weeks after being told, oh, you'll just have to wait, and they were freaking out. She was huge, you know. She was measuring gigantic. So they rushed me to the hospital and all of my pregnancies with it was. It was about within nine hours. From the time I went into the hospital to the time they were born was about nine hours.
Speaker 2:My oldest ended up getting stuck and she had a shoulder dystocia. When she came out, her arms were not moving, and so the doctors rushed her over. You know, normally they pat her down and they hand her to you, and no, they rushed her over to the side. And I'm hearing these doctors talk. They're calling in nurses and I'm asking what's wrong and the nurse tells me well, it's going to be okay. The doctor looks at me and goes actually she may have nerve damage in her shoulders and may never be able to move her arms. What? That's what she told me. I'm sitting there on the table, my first baby spread out on the table still, and she's like actually, your kid may never be able to use their arms. Just like that, just like that, like, oh my God.
Speaker 2:And I was, you know, my husband was leaning over me, you know, check on me, and I was like go go to the baby, you know go over there. And sending every, every, everything that I could to go check on her, you know.
Speaker 1:Have you left a terrible review for this doctor? I have thought about it over and you know what.
Speaker 2:I checked online because I was like I should leave a review, and this was recently. This is now like 14 years later and I'm still affected by it.
Speaker 1:I don't blame you.
Speaker 2:And about half the reviews are exactly what I would have said yes, so several of them are like I felt. Judged by this person, I felt the care was you know this and that like intense.
Speaker 1:Yeah, okay and then. So how crazy, though, to be told this thing and then that ends up not happening, right, but then something else ends up happening. We'll circle back to Heather and her birth experience with Fiona. But let's get, let's get into your daughter's diagnosis and how that happened, cause I feel like we're right there.
Speaker 2:Something interesting that I do share with the author is that experience in the first couple of pages where she talks about, you know, her daughter was born and they were hovering over her, but when she was handed the baby they were.
Speaker 2:She was told something along the lines of like she's perfect, or she's she's perfectly normal, or, and that that was the last time someone would refer to her as perfect. That is something that I connected to very, very much, because that is exactly what happened in this nine pound, 10 ounce, huge, healthy baby girl given to me and told me that she's perfect, you know, and while she is, it's just. It was a different feeling when, three months later, you know, we're finding out from a bunch of doctors, we're finding our diagnosis. You know, my mother-in-law was actually the first person to come to me with those concerns, it being my first baby. I had no real timeline of you know, but she had brought up the fact that she wasn't tracking, she wasn't making eye contact and that it might be time to get her checked out. You know, I can remember just being just crying at that before we met the doctors, crying at what, if, what if she has autism, you know, like, like, like that's the worst thing, is you?
Speaker 1:know we've been sort of, as a society, conditioned to like be afraid of that instead of accepting that pretty much we're all on a spectrum of varying degrees. That's a very topical situation right now and I it makes me so angry for people who are diagnosed with autism and parents of children, because there's absolutely nothing wrong with you.
Speaker 2:Absolutely nothing wrong. No, they're incredibly special individuals. I have learned so much with my daughter's neurodiversity, of the way that she looks at the world, the way that she processes information. It's amazing, I find it. It's so beautiful. We're just not. We're not as a society exposed to that. We're not, we're not taught to value those, those quirks, because maybe they're not profitable, maybe they're not.
Speaker 1:That is easily conformed. I wonder if that's it. Oh yeah, there you go. Yeah, talk me through. Your mother-in-law brings you these concerns and you go to the doctor.
Speaker 2:Yeah, we actually went to three doctors in six days. Wow, all ophthalmologists. So first it was just a regular ophthalmologist and then it was a pediatric ophthalmologist and then it was a low vision specialist ophthalmologist. We just kind of were handed down from from each doctor ONH, optic nerve hypoplasia, which is what the doctors can, the ophthalmologists can actually see as the small optic nerves in the back of the eye, and little did I know. So ONH optic nerve hypoplasia is a part of a larger syndrome, septo-optic dysplasia, which she has. That includes, along with the small optic nerves. It can include the abnormalities in the brain and we needed an MRI to show us that.
Speaker 2:So what struck me the most about the medical community was meeting all of these ophthalmologists, you know, and getting this diagnosis. The last one, especially, nobody made it clear to me that she needed further testing, nobody made it clear to me that I needed to. You know, onh can be part of something bigger. It just I was given, I was given a diagnosis and then you will what you want with that. And the last guy who was the specialist okay, he told me he confirmed her own age, casually dropped that she may need an MRI and then started to talk about what he was doing for his chili cook-off that weekend. So I was being given this devastating news that I had no understanding of and the doctor switched. I realized that's his every day, but to a parent, you know, of a three month old.
Speaker 1:Did you resonate with Heather's experience then with some of these doctors with this terrible bedside manner? Yes, which we'll get into a little bit more specifics of that.
Speaker 2:And so you really start to. You really started. I was kind of floored at that time not floored, but I was interested in my perception of what kind of doctor I wanted. I started to realize that I needed less, less of a floral or flowery approach. I really appreciated the doctors who were information-based, who gave me as much information as possible in layman's terms. You know, I didn't need the, the, the personal connections and stories. I needed information about my daughter. I needed help. We needed a way forward. Yeah, you know, we saw more and more doctors and after that he had dropped casually dropped septo-optic dysplasia. I went home and Googled it, just like.
Speaker 1:Heather did.
Speaker 2:And you know the spectrum that it that people with this diagnosis can can be on. You know it can go from from mild visual impairments and can be on. It can go from mild visual impairments and normal growth development to severe developmental delay and seizures and pituitary glands not working to where you have to administer hormones all throughout the day.
Speaker 1:You just were in this place of unknowing, like a limbo. There was nobody there that was saying these are the next steps for you to take, so that we can, you know, narrow it down, or was that just like we have to just see what need to? Now? Your next step is a neurologist and an endocrinologist.
Speaker 2:And these are your, your, your next go-tos, like that's. That is what I would have appreciated because in when, when we did see the endocrinologist that came back normal her neurologist mostly, you know it her MRI showed some abnormalities on the in the midline of her brain and missing gray matter, and so when she was very young, we did not know what that was going to manifest itself as later in life. Right, that's where a lot of the care went to. Okay, you know, she's not in dire need, we'll see you every six months or we'll see you every year. We'll keep an eye on this. So we did learn quickly with the first initial test in the MRI that she was in a stable condition. That was comforting.
Speaker 1:Yeah, your situation. It just is reminding me of Heather so much where, like you said, she was given this baby and she talks about the Apgar test, which is this test that all the babies you know get within that the first five minutes of being born. And it's this way of realizing how quote unquote good your newborn is, which is kind of crazy to think about. But you want that high Apgar score, you do. And her daughter, fiona, scores at the one minute mark it was an eight and at the five minute mark it was a nine. She writes Apgar called her normal and it was the first and last time anyone would.
Speaker 1:As the morning wears on Heather's given birth, she writes, it became clear that I needed to worry. Fiona was four pounds 12 ounces, an alarming size for an infant born full term. Heather is really worried about the size of her daughter and she's being made to feel worried about it. And she writes about the painstaking process of trying to get Fiona to latch and to feed her and having to like pump on a hospital grade pump and squeezing out tiny drops of colostrum thicker liquid and then they suck you dry until your milk comes in. They're like these little vampires. That was my experience First night not so bad. Everybody kind of got sleep. Second night both of the babies were like where's the milk? Where's the milk? Where's the milk? I was Googling nipple shields at 2 am.
Speaker 1:I was like I can't do this anymore.
Speaker 2:How am I supposed to do this anymore? I ordered nipple shield overnight. I love it.
Speaker 1:A doctor contemplates sending Fiona to the NICU, but then they decide they can wait on that. So Heather is just getting all of this like mixed information. Brand new. Mom, you're in the thick of it, you're exhausted. She writes. A new nurse entered my room, someone who hadn't just seen me squeeze a person from my body without medication, and she asked me a question that felt like a slap Mom, did you take any drugs while pregnant? No, nurse, I wanted to say. I took superfoods, I took Reiki, I took electronic accords and affirmations, and that really pissed me off. It's like, on one hand, I understand, because it's not making sense to the medical team. Right, this is a full-term baby and she's very small. The first thing that they need to figure out is if there was any drug use or what happened, you know, during the pregnancy. But we're obviously reading this from Heather's perspective, so we know that everything, like she did everything she could, plus more, and to be asked that, I can't even imagine the pain that that would cause.
Speaker 2:Sure, I mean, the sad reality is, you know, there's just such a broad spectrum of things that happen, people that come into their services, sure, but I mean, I think there's a theme, over and over again with people's experience with the medical community, of how abrasive it can be, you know.
Speaker 1:Yeah, and in some ways it's like I get it, because I think it takes a certain type of person to be able to be in that field, in a field where, like horrible, horrible things happen every day and like you have to move forward, you have to disassociate in a way. But then it can be maybe easy to lose track of the fact that, like, these are people that you're dealing with. They're not names on a chart. That's right. I've had really good success with doctors. I do tend to pick women. I don't know if that helps in my experience that they've listened more.
Speaker 2:Statistically, that's a real thing and I will say I was very surprised. My doctor was in Tuscany for a wedding when my daughter was due. She was leaving for Tuscany. So I was like, great, I'm supposed to have a baby that time. But while this woman it was the same woman who delivered James 10 years earlier. So she's, she's, you know this wonderful doctor. So she couldn't make it. So the doctor they called in we had just done shift change was a man and I had never been to a male doctor before in my life. He was wonderful. I would have, honestly, maybe he retired that about three months later. I would have switched doctors. Quite frankly, he was amazing. He was caring. He came in. You could tell that he was experienced, he took a lot of care. Now, this was an incredibly fast. He was only in there for a very short amount of time, but the work that he did, I appreciated him very much.
Speaker 1:Good, I love that. So while Heather is kind of having these experiences, like she's falling in love with her daughter, right as most of us do, when that little beautiful babe is like passed over to you, the pediatrician comes in and that's who they need the all clear from before they can go, and Heather's ready to get out of there because she's tired of like feeling judged and it's just. He's not feeling like a good situation for her anymore. And she writes that the pediatrician is suspicious and he looks at Fiona with displeasure, asking about the placenta Quote. If it's not the placenta, he said, then it's the baby. You see, it's either a bad seed or bad soil. She continues. I wasn't so sleep deprived to lose the thread of his logic. I was the soil, my daughter was the seed. My daughter, according to his expert eyes, was a bad plant. I was so angry that the doctor said this. I mean, who the hell says this to anyone? I hated this for her.
Speaker 2:I imagine some of these things coming out of these doctor's mouths, right.
Speaker 1:Just think about what you're saying. Okay, so they go home. Heather is still struggling to get Fiona to eat, but she doesn't want to turn to formula because she's been conditioned to believe that formula is bad and she just feels like she's failing. She feels like she's failing as a mom already she writes a lot about surrendering. Throughout the memoir We've talked about letting go a little bit. She couples it with the idea that quote every new beginning involves the dying of something and every death precedes a birth. She writes. A friend of ours, a priest and mediator, told us that after the birth of his first child, it took him months to let go of his old life and surrender to the demands of parenting. He didn't enjoy parenting until months into the gig when he finally let go. We've talked about your eldest daughter. You had her on an unexpected timeline and these unexpected things come up. Did you feel like you had to surrender this idea of what you thought motherhood was, or were you able to just kind of like, go with the flow?
Speaker 2:My timeline was unexpected and unconventional, you know, but from the very first moment it was nothing but healing for me. I found so much love and purpose and healing in motherhood and my own family. You know I got away from what I was raised with. I'm sure we had plenty of struggle, but the love was real and we could get by on very little, you know, just living on love kind of at that time.
Speaker 1:Yeah, oh, I love that Heather writes. I didn't know that in becoming a mother my old worldview would get cast down, that much of what I thought mattered in life would grow old. I didn't know just how profoundly my life would be made new from this baby, and not in the usual. A baby changes everything way no in a way that would toss my deepest hidden values upside down. So at this point Heather is still very much trying to get Fiona to be quote, normal and she'll have to reckon with how the importance of being normal and its cousin right slash correct in her life and in our society muddies the way that she can feel allowed to purely love her daughter.
Speaker 1:Months pass and Fiona is not gaining weight like she should or reaching the standard baby developmental marks. Finally, a doctor suspects a syndrome. Fiona has wide-set eyes, a heart murmur and a Y-shaped butt crease. Heather is so, so honest. She writes For a painful second that felt like free-falling. I wanted to hand my child to someone else. A mother is not supposed to have this thought. A lizard maybe you talked a little bit about grief earlier, I think, when you, especially when you're given such an unexpected diagnosis.
Speaker 2:It's just, it completely erases every preconceived thought in order just to to live life the way that you know her peers are. And I'm not saying that that's a bad thing, in that you know, you put in the work. That's, that's what I've learned with this life is you put in, you just put in the work, you go over those barriers. That's just your journey, right? Life isn't fair, but it doesn't make it any less. I also feel like you know my eldest has done so much work in her life on top of the regular expected work to get to where she is, she works, she works incredibly hard.
Speaker 2:So the grief aspect of in all parents of disabilities, I think there's a time where you're, you know, you're grieving the work, you're grieving the unknown, you're, you're just, you're scared for your child. I can remember working at that time as a waitress and there was a little playscape on the outside of our restaurant and I, just I was. So I wondered over and over again would my child be able to play on the playscape? Would she run and play like with all the, all the other kids come to find out?
Speaker 2:Yes, Quite frankly, she's taught me over and over. I mean, you would think this little, you know, mostly blind child would be scared, and she has. She's never has been. She has always just barreled towards that playscape and and figured it out. So that's been our life and and the grief and the fear has really just turned into like resilience and and confidence. I can't imagine Heather this is where our journeys are different is there was such an unknown in our spectrum? But I did. It did get to a point where I knew that she was stable. I knew that it wasn't degenerative, that it was all work from here, but that everything was stable.
Speaker 1:It wasn't limiting your daughter's life expectancy.
Speaker 2:Oh, and before I knew those things for sure, there is a fear unlike any other that sticks with you for the rest of your life. It sticks with you that it's not good enough, that my child is the better spectrum and that we are the lucky ones. But you become so vividly aware of the parents sitting next to you that are, that are, and you, you, just you start to. You get this heightened compassion and empathy. Heightened compassion, yeah, and community among these people, of of you want to fight for every child that needs a little bit more. They all deserve it, yeah.
Speaker 1:Yes, I completely agree with you. That's also a reason why I wanted to pick this book and talk about this, because I'm right there with you. I want to fight for your daughter, for Heather's daughter, for every, for people I don't know. Back to Heather's journey at this point she doesn't have an exact diagnosis, but she goes down the rare syndrome rabbit hole and she reads horrifying things she writes the internet had done what it does best stirred up my fears into a strange froth that I no longer knew which was up and which fact was truth. Can I just say, like the internet is really good at making us all be really afraid, so like we should all just like, maybe take some breathers from the internet from time to time, no matter what you're looking up. You know what I mean. Okay, so she gets the diagnosis Wolf Hirshhorn. Like I said, whs. Now she has even more solid horrors to combat, like the mortality rate that is estimated at 34% in the first two years of life.
Speaker 1:It's so scary and she writes about just crying, just emptying out, feeling so scared, and her husband tells her, if our time with her is limited, then I'm just going to make sure I love her the best I can every day. We need Justin to just write a book about Zen and the art of parenting. Oh, yeah, I would. I would go to Justin's church. Yes, justin. Yes, heather writes about finding a community to connecting with fellow WHS parents. But the horror stories that she will hear from them, especially when it comes to, like the medical community, how doctors told them to leave their child at the hospital I audibly gasped at that audibly gasped when one of the therapists told her you know you can put her in a home.
Speaker 1:Yes, we're right about to get to all of those little examples. Luckily, heather meets with this resident when they're at the I believe they're at the neurologist's office and he says we won't put limits on her, okay, we'll help her be all she can be. Heather writes, the resident did a powerful thing that day. Through language and framing, he took my daughter's life back from a culture that might label her as less than, and returned that life to us.
Speaker 2:Thank God she found some of those along the way. There's a doctor that said the right thing Isn't that life? It's life changing, to just say the right things.
Speaker 1:Yes, she has bad experiences. Luckily, heather also is able to get the much needed therapy for Fiona early because she was diagnosed early. Heather comments how grateful she feels that Fiona was born in 2012, years after a federal law declared that kids like her deserved therapeutic support in 1986, when, centuries ago, theologians Martin Luther and John Calvin suggested people like Fiona were possessed by evil spirits. So, thank God, we're all living in a more modern time. However, in her county in Ohio, they used a teaching model, which means that the therapist didn't work with Fiona directly, but taught Heather what to do. So now she has to add occupational, physical and speech therapist to her list of people to be for her daughter, all while being a mother, all while we really don't get into this too much in our discussion for this episode. But like she's pursuing a career as well, a career in writing. But like you, she's ready to do the work right Because she loves her daughter and she'll do whatever it takes, but at a certain point there's only so much of you to go around.
Speaker 1:Yes, she writes when I was having no fun. As a new mom, I considered it the mark of bad mother. Good mothers reveled in the work. I thought so. Did you ever experience this feeling, or you ever pushed to this point where you're just like?
Speaker 2:this is a lot. Yeah, I mean, that's part of that mom guilt on steroids. And throw in that I was 22 years old at this time. In those early years I fought a tremendous amount of guilt for not being able to be everything for her and you really don't know the questions to ask or the support to seek. It comes with time and each specialist we saw more recommendations for support were made.
Speaker 2:I learned over time that I cannot take over the role of everything that she needs. You know, you enter this journey of motherhood and I didn't go to school to be a neurologist. I didn't go to school to be an endocrinologist. I didn't go to school to be an orientation and mobility specialist. I mean, I just was not physically capable of being all of these specialists for her. And what I realized? That it's my job to be her advocate and her team lead and it's my job to keep this team moving forward, everybody having their piece to that puzzle.
Speaker 2:That's where what I learned that my role as a mother would to be because this is impossible for me to take on mentally. Take on, you would drive yourself nuts that I'm not enough. I'm solely not enough to give her the life that she needs. You know you need. You had to reach out and you had to ask for support. I was the squeaky wheel. I have learned in life it is my motto that the squeaky wheel gets the grease. You know, as an advocate for your child, what you ask for what you, what your expectations are and just letting her team know that you are there, you're active and that you're serious about your progress. You know that's. You have to be on top of it as a special needs mom.
Speaker 1:I love that the squeaky wheel gets the grease. I mean, it's true, and especially like and I think that's also a journey that Heather goes on. You know, we talked way at the beginning about how, like, she just wouldn't really say anything, right Like I so resonated with her being like, yeah, when the hairdryer I don't know if you've ever been in a salon- and they're like on your ear for so long and you're like it's okay.
Speaker 1:But, like then, through her love for her daughter, found this inner strength and this inner power that I wish for all women. Right, that bravery, those fucks, go right out the door. That's right. Advocate for yourself and the people you love, for how little or how much they need it. You're worthy of taking up space in this world.
Speaker 1:But throughout all of this, heather still really struggles with what she wants Fiona to be an able-bodied baby.
Speaker 1:She would fantasize about searching the globe for the missing piece of her fourth chromosome, and she realizes she has to let this go, specifically via this sermon by Mother Jackie so, like I said, justin's church is very progressive and so there are female priests and they call them mothers instead of said Justin's church is very progressive and so there are female priests and they call them mothers instead of fathers, which I think is fantastic.
Speaker 1:I loved it and Heather realizes quote I had to die some version of myself, the desperate, clinging, distraught version who wanted what her child was not. It's difficult for her because Fiona has her first seizure when she's young, because she has a fever, and we already talked about how you know they go to neurologists and they're able to get this rescue medicine, but Heather has to learn about all the different types of seizures and how to administer the medicine correctly, because, like her daughter's, life could literally be at stake. And it's like when the stakes are that high and all the while she's still a part of her, just wishing that she could change her reality, and I think that's a big thing, is like she just needed to accept it but also feel permission to accept it. I feel like that was a huge part of her memoir for me too.
Speaker 2:She dealt with the outside influence of, of she realized the world was telling her these things, right, like realizations of oh, I do hold these biases and oh, what is this grief for this? This person, you know, yeah, I think, definitely defeating our own societal conditioning towards this, because she knew I mean right away, there's no going back. You love these little people and with every part of your being, and that is a really tough, tough thing.
Speaker 1:I think it almost was like she didn't really need Fiona to be quote unquote normal. She just wanted her to be loved and she felt like the only way for her to be loved was for have this quote unquote normal value.
Speaker 2:Yes, yes, the world. You want the world to see, to see their worth, right. You see all of this worth and all of this wonder and you wonder. You wonder if I wasn't here with the world love you the way that you deserve? And it's heartbreaking to think no, actually they wouldn't.
Speaker 1:Yeah, she writes this how did I ever learn that people like my daughter were less than? Had the roots of my thinking been planted by the defect language she talks about? You know people using the R word and things like that she writes? Had they begun in the hallways of that elementary school I attended? Not quite. The roots of my thinking were older than me. The roots dug deep into history's soil, reaching even past the story of Jesus's disciples who found a blind man on the side of the road and asked their master who sinned, to make this man blind, the man or his parents?
Speaker 1:Disability as punishment, Disability as sin, Disability as problem, as outcast as other these equations have been graffitied all over human history. I work really hard to cater my vocabulary to what is not only correct but is like what that community wants to be labeled as Respectful. Yeah and truly. It's absolutely no skin off my back at all, None. But when she wrote that passage I was like, oh my gosh, it's so much deeper than just us casually dropping those words in elementary school. Like she says, you know, like we really have, like disability as punishment, disability as sin, the Bible. Like my mind was blown because I was like. These are the things that you don't even realize, the biases that are created, and you just kind of learn to think this way and that way. And then all of a sudden it happens to you You're the mother of a child with a disability and you have to fight for their value and their worth and their place in this world to be loved. You're saying like all lives matter.
Speaker 2:Do they? Do they, when it comes down to it? Ask yourself that. If that's your slogan, who are you overlooking in this conversation? Who are you devaluing?
Speaker 1:Thank you for bringing that up. That's a great point Heather writes. I have never heard what I wanted to hear, which was, oh, genetic condition. You know, my nephew had a genetic condition and he couldn't walk or talk or feed himself, and you know what? He's awesome, a great man. If I heard that Heather writes, I would have burst into tears of gratitude and I wanted to include that because I think people, they want to say the right thing. I do. I think people come from a good place. But it's like I love that she gave us this example of just like don't try to fix it, don't say, oh, they turned out fine. Like just acknowledge that my daughter is beautiful and wonderful as she is.
Speaker 1:And that's enough. But Heather confesses she's still envied. She writes here's what I wonder now. What did I long for? A baby who could do this or that thing, or a baby who was fully accepted by the world? I suspect the two longings were near equal, inseparable, conjoined. I wanted a baby who did all the things babies did, and I wanted a baby who was valued equal to typical children. If I'd lived in a world where babies like mine weren't called bad seeds or denied life-changing surgeries, I know my yearning for an able-bodied child wouldn't have nagged me quite so badly.
Speaker 2:I feel like my daughter is accepted in the world. I feel like she and other people in the disabled community are overlooked. You know the support and the work that it actually took to get her to where she is today, on a really promising path to be a happy and productive member of society. It was intentional and it wasn't cheap. She is more expensive to educate. She requires adaptation and equipment to be able to be included successfully with her peers. You know her diagnosis doesn't mean that she's not worth the investment.
Speaker 2:We currently have an administration in office that wants to eliminate the Department of Education, wants to eliminate diversity, equity and inclusion in almost every aspect of our society, all of which provide funding, research, protection opportunities and training for children and folks with disabilities in the classroom and in the workplace. I feel like people want to vote for politicians without having to actually look at the realities of the cuts that they're advocating for and who exactly they're leaving out of the conversation. When we turn people into just a number on a spreadsheet you said this earlier when we turn people just into a number on a spreadsheet, you really eliminate the humanity of each living person and what quality of life means for disabled folk and their loved ones.
Speaker 1:Damn babe, mic drop. That was beautiful, thank you. That's exactly right, and at the very least I just hope that today's episode invites these questions in our listeners' lives. I think that's what Heather wishes for her memoir as well. She talks so much more about finding a community. I talked about that a little bit earlier. She goes to a conference where she meets other children who have the same genetic condition as Fiona. But now I really want to get into the ways that her community was able to prop her and Fiona up.
Speaker 1:I said that she lived in Ohio at one point. She moves to Vermont and these Vermont therapists are absolutely incredible. Their family moves to Vermont, justin is offered a position in a church and if they can stretch it, they can manage it on his single income. Because Heather has had to put Fiona's needs and what she is for Fiona on the forefront and her career goals on the back burner for now. Obviously, she writes this book, so we know that it comes back around and, to their delight, they have the most excellent free therapies for Fiona and they come directly to her home and, unlike the therapists in Ohio, they respond to Fiona with joy and encouragement, not disdain. And these therapists have lofty goals for Fiona and they believed that she could reach them. Like chewing things, most people with WHS cannot chew. Walking In Vermont, fiona has more therapeutic hours in one week than she had in a month in Ohio. Isn't that incredible?
Speaker 2:In Vermont. Shout out to my man, Bernie. Of course they do. They take care of their people, don't they?
Speaker 1:Yeah, they do. Later in the memoir, these Vermont therapists will recommend an app to help Fiona find language so she can communicate her wants and desires as she is working on her verbal skills, Because Heather writes, communication is a human right. This is called ACC Augmentative and Alternative Communication. After much deliberation on what is best for Fiona, they find this app. She gets this iPad for free from Vermont's Flexible Family Funding.
Speaker 1:I mean, vermont really sounds like a place to be, Fiona ultimately learns how to use it and communicate what she wants or needs. Heather writes about working with Fiona to give her a basic yes, a way for Fiona to have agency and independence in her choices. She went so hard and I think that's a big thing too Independence right? Oh yeah, giving your daughter the gift of independence. Talk me through the journey that you've had to take so that your daughter could have this more independent, supported life. I know you guys. You still live in a small town and I think one of the reasons why you moved from that small town was to give your daughter more opportunity. So take me through that story.
Speaker 2:Yes. So we, you know, we moved back to our small hometown and I thought that my ability to be more involved with with the school and just understanding and knowing more people in it was going to give us the best relationship there. But what I quickly understood and these teachers and women who tried their very best but they were lacking the experience necessary. You know, maybe seeing one visually impaired child, you know, in in the years of schooling. You know, maybe seeing one visually impaired child, you know, in the years of schooling, you know. So we were also sharing one, a specialist, with like three other district rural districts, so we would get access to our specialists one day a week, you know. And so we definitely made the decision. And therapies, you know, we quickly understood that she had sensory processing disorder and the therapists in the small town were not trained to deal with that.
Speaker 2:So, you know, we went looking and luckily had the means to move to an area for the schooling and for the specialists that we needed. Every specialist we sought out kind of had a recommendation that kept moving us down the road. We did a couple of conferences where we met parents with kids who were also visually impaired and that was something cool. We have a group of VI kids that I've watched get older with my daughter and they were so cute when they were young to see them side by side with their little glasses and their little canes and very similar quirks to each other. It's the cutest. So, while we never really developed a tribe, we were involved and surrounded ourselves in a world where people understood our experiences and our struggles better.
Speaker 1:That's fantastic. Have you already started to see a shift in the decrease of funding, and has that played out?
Speaker 2:We luckily personally haven't. Now we do see it in the districts. We have seen it in the last couple of years. We moved to this district because a district above out of the Austin School District because of Austin's continued failures and under servicing of its special needs, special education population and that's budget cuts. We live in a state that is underfunding our schools repeatedly and that is where we have seen the most lack and luckily with our therapist and some supports. But these are delayed evaluations. These are kids. Just because of these budget shortfalls we can't hire the specialists and enough support people, children are being delayed for their evaluations, sometimes by years, and those are full school years of these children sitting in and not getting the specialty work they need to be fully inclusive with their peers. We've seen that Now I will say my daughter has been very vocal of her fear of the future and their fear in what these budget cuts mean for her.
Speaker 2:You know you can say all day that the IDEA, the Individuals with Disability Education Act, is still enacted. We get rid of these departments, but these federal laws are still in place. Who enforces these laws? Who? When there's a state violation, who do we turn to when there's no more Department of Education? Who do we turn to for our civil rights to be reestablished? I mean, this is it's absolutely crazy State to state kind of you already see some of those shortfalls, because we do live in a Republican state that the ripple effect from the federal funding hasn't made big impacts. But I am worried. We just enrolled my daughter in the Texas Workforce Commission where they help her with training and placement in different areas of jobs. This is for her to be a more productive member of society. Right and every day. I wonder isn't this DEI? Isn't this the definition of diversity, equity and inclusion? I mean, how is this a bad thing when it is helping her to be a more productive member of society? This inclusion work?
Speaker 1:How is it a bad thing? I don't understand why we're trying to narrow our scope of what good is. It feels like we're taking 5,000 steps back. It does, doesn't it? And it was interesting to me in Heather's memoir, which was just from a few years ago, but like when she had been living in Ohio versus Vermont, and you just are kind of like, like you said, don't you want to help encourage these individuals to be as productive members of society as possible? Isn't that like the ultimate end goal?
Speaker 2:For a capitalist society. Yeah, 80% of the visually impaired community is unemployed because we have been lacking so much in our support and inclusion for these individuals into the workplace and our ableist society. You know I was going to say you had asked me earlier about the supports that she needed to get to this point. She has a visual instructor that helps her and her teachers include her into everyday class. She has an orientation and mobility specialist who helps her learn how to navigate the world around her, use her white cane, how to cross streets, how to grocery shop, how to plan for travel, how to use public transportation.
Speaker 2:When we finally got moved to the city, she attended therapy four times a week for five years. Like Heather said, they got by on Justin's income To be there for her. Running her back and forth to these meetings, dealing with the government with her healthcare was a full time job. I can count on, like both of my hands, the amount of time that a clerical error stalled our healthcare support and we had to pay for her therapies out of pocket. I mean her therapies were $1,600 a month, that's $20,000 a year in therapy costs, and she needs these therapies for her quality of life, for the future, where we are now, is not possible for the vigorous therapy work that we did for years and years in her elementary school.
Speaker 1:To really simplify it for people who maybe don't get it. It's like going to the gym, right? You go once a week. How strong are you getting? You go four or five times a week. You're going to get strong really fast, right? That was a great analogy. Yeah, people might not understand, like, if you're doing the therapy once a week, that should be enough. It's not. It's not. There's just so many people out there with so many vast experiences that when you really want to create a society and a world that's better for them which is what the to be what are the basic rights that we have, you know, indoctrined on our constitution? How can you do that when you don't listen to these stories and have people like you, who understand it, who have lived it, talk about policy and talk about real changes?
Speaker 2:We are starting, as a society, to or with this administration of the life is black and white, right. This is how it is. This should be simple, and it should be. This is how I've lived my life, and when has that ever been a reality for the world? When has that ever been a reality of black and white existence? It's never. We exist in the shades of gray.
Speaker 1:It's honestly, when you're a child you think everything's black and white, and then you grow up and you realize that it's not. I love having this discussion with you. Let's get back to Heather. She and Justin decide to have a second child. So she balances pregnancy quote with the crappy, unglamorous task of what some call special needs parenting Filling out forms, calling insurance, driving to various specialists, long hospital appointments you brought all this up. And she also balances this pregnancy with quote a mammoth fear. My fear partially eclipsed the beam of love, love I'd hoped to emanate for this new human. It's hard to love a stranger. Harder still to love that stranger through a rainstorm of what ifs. What if you too contain an anomaly? What if you are sick? What if you teeter on the edge of mortality? What if you break my heart? How old was your eldest when you got pregnant with your son? Yeah, just seven months.
Speaker 2:Yeah, so they're 16 months apart. So looking back at it now, it's crazy. It is crazy, I mean, it has worked its way self out. They've had each other their whole lives. But come on man. What were our parents probably thinking when we were like? Well, you know, hey guys, we have this small, beautiful little, you know visually impaired baby. But she's, we're getting having another one.
Speaker 1:Did you have any of that fear? Your eldest daughter's condition is genetic.
Speaker 2:No, I don't think so. I think it's random and it's and it's happening. Yeah, and you know, visual impairment. They've said that this diagnosis is is happening on epidemic proportions, happening more and more, that children are being born with this diagnosis.
Speaker 1:Okay, so did that thought ever cross your mind, like when you were pregnant with your son, like I need to prepare myself, like of course we had?
Speaker 2:we had a little bit of that, but I think it was more so just in the thick of it. I think that we were just we did extra, an extra scan on his brain and brain works, like that. I feel like, had this, my first doctor with my eldest had been a little bit more interested, and not that it would have changed anything, except for, maybe, preparation, and they probably could have picked up on some of this from some of the ultrasounds you know some of the yeah yeah, okay, I mean they say that like being a special needs parent is like going on vacation that you're told that you're going to Maui.
Speaker 2:So you pack your swimsuit and you know, you brush up on your scuba diving skills and you bring your suntan lotion and when you land, it turns out that you arrived in like Siberia, and so not only you know are you utterly unprepared, but you know you didn't. You didn't pack for this, you didn't prepare for this. One surprise like that is enough for a lifetime and I've come to value any and all chances to plan and prepare. And I understand I've learned that you have to let go of control, but it feels like you've learned to let go of control by taking control where I can. Does that make any sense?
Speaker 1:That makes so much sense, and you're talking to somebody who loves to be in control, so I'm with you. Knowledge is power and education is empowering. And as long as you do it, right is power and education is empowering, and as long as you do it right. You know, don't go down those Google rabbit holes.
Speaker 2:I did my research. Yeah, yeah, yeah, A little. Let's watch ourselves with that.
Speaker 1:But I do. I do think that knowledge is power and any time that you can just be a little bit more prepared for something in life, but again balancing it with letting go and realizing that you can't always be prepared.
Speaker 2:I would like and Heather deciding not to do the test the second test because it could have been dangerous for her child. I respect that so much I wouldn't have risked it either.
Speaker 1:Yeah, she was really debating getting the amnio done with her second and that is such a moving passage too because she really takes you through it. I mean she's sitting there and the nurse doctor comes in and they're like are you ready, do you want to do it? And she's like no, we're not ready, like we're thinking, because she's trying to just figure out. Like who am I doing this for? Am I doing it for me or am I doing it for the baby? And ultimately she decides that it wasn't worth the's like, ah, petra. So her water ends up breaking on. What she later realizes is St Petranilla's day, peter, petra. She has no idea when they name her daughter Petra. And then when she Googles, like interesting things that happen on her daughter's birth, like this pops up and she's like, oh, my God, it's so cool. And the crazy thing is that St Petranilla's expertise she's the saint invoked against the very thing that triggered, that triggers Fiona's seizures fever and her seizures. I feel like we didn't get into it as much and I don't mean to downplay it, because it is a very terrifying thing that they are constantly having to monitor Fiona. A fever causes a seizure and these seizures can be life. They can be life, you know, yeah, so scary. So I don't mean to downplay that at all and that's why this is such a crazy, cool coincidence. Out of the 10,000 saints they pick St Petra and she's the patron saint against fever, so it's just like so beautiful. She writes I had one foot in the land of rare and one foot in the land of normal. I was grateful to my girls for letting me hold dual citizenship. I could let both kids be themselves.
Speaker 1:The last section of the memoir is a couple years flash forward. Heather has a new job in the English department. Fiona's in preschool, later in kindergarten, and Heather writes about how scary it was to send Fiona to school for the first time and she makes the video for the teachers so that they can know their daughter. And Fiona isn't overwhelmed at all at preschool. In fact she's like a little mini celebrity and everyone loves her and everyone says hi. And she talks about how Fiona, like air, kisses them all and I can just like picture her so precious.
Speaker 1:Fiona is able to chew ultimately able to chew, to walk on her own. She speaks so many words, she can hike half a mile uphill. She's attempting to cross country ski and she enters kindergarten with confidence, and Heather writes it just about being so impressed with Fiona's elementary school, working with her to discuss how a kid like Fiona can be included. She writes about how she gets to sit down with teachers and staff and emerge a plan for confidence, and she knows that this isn't a universal experience for many families. She writes about the act of Congress in 1975 that guaranteed all disabled students with the right to a quote, free and appropriate public education, but that even quote. When President Ford signed it into law, he predicted this bill promises more than the federal government can deliver. Now even that promise has a risk of having even more failure.
Speaker 1:In her epilogue, heather writes when I first started researching Fiona syndrome online, parent after parent offered versions of your child will teach you not to take the little things for granted. Through the phantom chunk of Fiona's missing fourth chromosome, I've gotten to see that we all, every day, take the miraculous for granted. I will repeat forever and ever my daughter doesn't exist to teach me things. Her reasons for being on this planet are as mysterious as the reasons any of us find ourselves here in these particular bodies Among three trillion trees. Fiona, with her broad grin, has brought me again and again back to awe. I know it's beautiful.
Speaker 1:I hope you're proud of yourself. Growing up with you. You've always been a go-getter. You've always been that person who never shied away from hard work, whether it was like pitching a thousand pitches every night so you could be the best pitcher. You have poured so much love into your daughter and into your son and into your third. You have built a beautiful family and you have paved a beautiful path forward for all of your children. I think you've built a beautiful life for yourself.
Speaker 2:Thank you, thank you, I feel it when her therapists, they're giving out compliments for her work ethic and then turning and saying and's because of you, mom, that's because of you, and and and I couldn't. There's nothing better that you could say to me than that is is you know she is. She has this advocacy for herself, this determination that she was born with, but, yeah, that we've set up to, she has. She just plows forward in a very confident way. I'm glad to see. That's. That's who we are for sure. So this memoir she writes, I mean, I couldn't put into words more perfectly the way that she, how beautifully she writes about her experience with her daughter. It's beautiful.
Speaker 1:It is beautiful and I feel like, ultimately, this memoir is advocacy to implore us, the readers, to reframe how we think about people with disabilities. She quotes this essay by Leonard J Davis, Constructing Normalcy. He writes the problem it back to a religious context, quoting the beginning of Genesis. In the beginning God made everything and after God makes each thing, the Bible says God saw it was good. She writes no matter how you read the Bible as history or fiction or poetry or myth, no matter whether you believe it's the inspired word of some higher power or just another human-made tome the writers of that first page want to tell us something. When we perceive with the lenses of the divine, we see goodness. That's all she wants for us to look at her daughter and see the goodness and the light and the joy that she is.
Speaker 1:And I just love this book and I love you. Thank you so much for chatting about this with me today, Raising a Rare Girl by Heather Lanier, and thank you so much for telling me about your experience and just giving me your heart tonight. I really appreciated it. I love you so much. Bye, Bye. Thanks for listening to Babes in Bookland. To access the full version of this episode, you can subscribe on Apple Podcasts or support us on Patreon. Visit babesinbooklandcom for more information.
