Loryn Brantz is an author, illustrator, and comic creator raising a daughter with disabilities. Dalia was born with a rare genetic abnormality that made feeding an all-night process, and doctors were not confident she would ever crawl, much less walk. Throughout their journey, Loryn has supported Dalia with acceptance, optimism, and love. In return, she is continually inspired. “I see her disability and her uniqueness as part of what makes her so amazing and special. And everything she does is going to be more amazing because of what she’s had to go through to get there.” Janet believes Loryn has found the formula for happiness as a parent – accepting, cherishing, and truly enjoying our children for who they are.
Transcript of “It Had to Be You – The Struggles and Joys of Raising a Child with Disabilities (with Loryn Brantz)”
Hi, this is Janet Lansbury, welcome to Unruffled. Today I have a very special guest joining me, her name is Loryn Brantz. She’s a bestselling board book author and illustrator for children, including her latest which is It Had to Be You. She writes for a popular online website and she creates comics. She also shares uniquely uplifting posts on social media about her journey as a mom of a daughter with disabilities. I’m so touched by the beautiful faith that she has in her daughter. She embodies everything that I admire and aspire to as a parent and a person, and I know you’ll be inspired by her too.
Hi Loryn, thank you so much for being here.
Loryn Brantz: Thanks for having me.
Janet Lansbury: Well, as you know, I discovered you through the interview that you did with Humans of New York, which was so inspiring, and it felt like something that every parent should read and be aware of because of the attitude that you’ve developed about being a parent, and your child, and your relationship with her. So I was hoping that maybe you could start with sharing some of your story, and whatever feels important to share with another parent that might be experiencing something similar.
Loryn Brantz: Yeah. I like to preface anything I say with, I think a lot of parents with children with disabilities will relate to this, the way I feel all the time, my life is so chaotic, you know when you wake up in the middle of the night to go to the bathroom and you’re just a little like you could fall over at any moment, I feel like that all the time, so please excuse anything I say that’s a little off because I’m just almost in survival mode.
Janet Lansbury: Well, that’s hard in itself.
Loryn Brantz: It is, it’s a lot, but it has its benefits too. So a little bit about Dalia and how she came to be, I think I said in the interview with Humans of New York that I knew something wasn’t right, right away. I looked down and I was like, “I think my daughter has some kind of syndrome.” And everyone thought I was crazy, they were just like, “Oh, she was born a little early, so that’s what preemies look like,” and yada yada, and the pediatricians said, “She looks fine to us.”
But at the hospital, she couldn’t latch on, and I had so many ideas about what parenthood would be like and what kind of parent I would be. I was hellbent on breastfeeding, I was going to breastfeed, my baby’s going to have breast milk, that’s the plan.
And even at the hospital, there’s a point where they said, “Oh, you’re not making that much yet, we usually give the baby a little formula,” and I said, “Oh, okay, I guess that’s okay.” And then fast forward a few months later, she wouldn’t drink anything, and I was trying to, I put maple syrup in formula, because I was like, I will do anything for you to get some sort of nutrition in your body. It’s amazing the stories we tell ourselves of how things are going to be, and then how things can actually be when you experience them.
Janet Lansbury: Yeah, and I mean, there is grief in all of those things. Even if we don’t have the kind of birth we want to have, there’s a sense of loss in those experiences.
Loryn Brantz: Yeah, there’s an expectation, and then there’s a reality. So we got home, and a couple of days later, she was having trouble feeding and I thought, oh, I’m going to feed her in the middle of the night by myself. My husband had been helping, I had been pumping, and she choked on the milk and turned blue, actually choked on it. And then I felt like I knew something was really wrong.
But we were also in that newborn phase, and I had never had a child before so I was like, I know it’s supposed to be hard, maybe it’s just really hard. And so we started asking the pediatrician, then having breastfeeding consultants come over, and the whole thing, and as time progressed, noticing that she wasn’t really holding her head up, or this or that.
And a lot of this… I didn’t know exactly what to expect. I hadn’t even really held a baby until I had my daughter. I thought she felt floppy, but I brought her to a pediatrician and I said, “I think she feels floppy, but I haven’t really held many babies,” and he was like, “Oh, she’s just premature.” So a lot of it was chalked up to her being premature at first.
Eventually, our newborn phase was so difficult because she really couldn’t drink, and I was buying every bottle and thing on the market to try to get her to have anything, and eventually, I figured out I could get her to eat a little bit if she was half asleep in my arms. So I was rocking her 24/7, drip-feeding one ounce an hour, and there wasn’t a lot of time in between to figure out what was actually going on.
My husband was really on the hunt for what was happening, and we were hiring women to help at night because we were so tired and delirious, and this night nurse said, “This isn’t parenthood, this is torture.” And I was like, “Excuse me?” And it broke my heart into a million pieces, I really started to realize something was definitely wrong.
There was another night nurse that was so nice and she said, “You need to take your daughter to the hospital right now, just tell them she’s having seizures, and then they’ll take you in.” Because otherwise if you go in, “We think something’s wrong, but I don’t know,” you always end up with no answers. So she was like, “Just tell them she had a seizure so that they actually look at her,” and I said, “Oh, okay, I guess we really need to do this.”
So we did go to a specialist’s and they ended up sending us around town to different doctors, and we ended up at a geneticist. Stop me at any time, I feel like I’m just talking on and on, it’s a really long story.
Janet Lansbury: No, no, no, not at all, please, just let go of that thought, this is absolutely important and helpful for parents to hear.
Loryn Brantz: Yeah, so I think she was three and a half months when we went to the geneticist, and before this even happened we already had started early intervention because the feeding and everything was so hard, and the specialist came and was like, “Oh yeah, there’s definitely something very wrong,” and we were like, “Okay, thanks, what do we do?”
So the geneticist very quickly discovered she has trisomy 14 mosaicism, and this is something that there are only 50 cases of in the world. There aren’t really any answers.
I’ll never forget my husband, he left work early and he was crying, he said, “I have to talk to you, we just found out Dalia has trisomy 14 mosaicism,” and I was like, “Oh my gosh, is it fatal? You’re crying.” And he said, “Not that I know of.” And I was like, “Is she in immediate danger?” And he said, “No.”
And I said, “Okay, we’ll figure it out. Everything’s okay, she just has this diagnosis and we have to look into it.”
And it’s kind of mysterious. The thing about when your child is diagnosed is something that no one’s ever really seen much of before, there’s really no roadmap for it. So we went on these deep dives, my husband especially went crazy finding every person ever diagnosed on the planet, and he actually even, he got a friend’s doctor credentials to get into medical journals so he could read real medical journals about it, and everything, so he got really deep in all of that.
Meanwhile, I was just trying to keep our head above water, keep Dalia alive, do all her therapies with her. And I do attribute a lot of my blase reaction to everything… my dad has Tourette syndrome and he’s a surgeon, he’s a doctor, he’s one of only two surgeons ever to have Tourette syndrome. So in my house, big diagnoses and syndromes and stuff were never really… it’s like, oh yeah, he has Tourette’s syndrome, but I never really thought of it as a bad thing, and I figured, well, a diagnosis is a diagnosis, you just have to see how the kid actually is, and I was just eternally optimistic.
We were very lucky in that Dalia was an early smiler, so even though she didn’t crawl or lift her head or clap or talk, or this or that, she was smiling. And I just felt like, I don’t really care if she meets these milestones as long as she’s happy, and she seems happy to me.
Eventually, she started eating. I think a lot of parents with kids with disabilities would also understand that she took so long to do anything at all, like be able to lift her arms, so that when she was able to it’s so exciting, it just makes all those moments so much more thrilling. She picks up a fork and I start to cry because she’s had to work so hard to do all these things — because of the hypotonia and the muscle weakness. It’s just a really amazing thing to watch.
So anyway, she’s almost a year old and suddenly she starts growing really fast, off the charts, and something about trisomy 14 is that you’re generally small, the people that have had it are very, very small. So we’re like, what is happening? Are we missing something?
And we actually pushed the geneticist to do further testing because we felt like there was more to it, and we were right. She had Soto syndrome, and again we almost went through the whole process of discovering it and acceptance again. I was actually kind of relieved because I felt like there’s so many more people with Sotos, even though it is very rare. I immediately joined this Facebook group for Soto syndrome, and all these kids kind of look like Dalia, and it was just so nice to have a community and see the potential of how she could be and just know more about it. There’s a very wide spectrum of outcomes, you can be anywhere from just really tall and kind of odd and not great at coordination and this or that, to not able to feed or anything. So I’m just so grateful every day to have her be able to do anything.
We have a toy set where she plays with groceries and I’m like, she can bag groceries right now and she’s only two and a half! So I feel good about her future. I’ve never been the kind of person to measure success in life by the typical: money, power, whatever, so I’m happy if she’s happy and is able to enjoy life. And she seems happy and can enjoy life, so we’re just doing our thing.
Janet Lansbury: You’ve got something that is what my mentor Magda Gerber used to recommend to every parent, which is to enjoy what your child is doing, enjoy what they’re doing right now, instead of focusing on trying to get them to do more or different. Embrace the child you have, because the messages that you give your child by doing that, and it sounds like you do it naturally, are just so healing and empowering and confidence building. It actually helps for them to do more because they don’t feel that stress coming from you around it. They don’t feel that pressure coming from us as parents.
Loryn Brantz: That’s definitely how I was raised. I come from a family of people with delays. I walked late, I talked late, and my parents just weren’t worried, they were like, “Oh, she’s observing.” And I walk now, and I came around, so I had high hopes to not be really fixated on those sort of things when my daughter was born. Of course, after we joined early intervention I have three specialists to date coming in every day to tell me what she should be doing at any given moment, so the pressure is always on, but I try to take it in stride because I know that people can be capable of so many things, even if they get a slow start or have crazy diagnoses or syndromes.
Janet Lansbury: Yeah, it sounds like you’re compartmentalizing that they’re just doing their job, which is to say “this is what we want to happen,” but that doesn’t mean that you have to embrace that attitude.
Loryn Brantz: Yeah, we try to do everything we possibly can to help her reach her potential, so therapy is all day every day, I do them with her almost always, I’ve been really lucky my employer is flexible with my time, and just going with her and celebrating the little milestones that she makes.
Janet Lansbury: Well, what you’re sharing in every way is so amazing. I told you also that I love your Instagram series on children bonding with different objects, holding onto certain random objects, and some of them are so fun, and you got submissions from all these people, right?
Loryn Brantz: Yeah, people have just been responding with their own stories, and they’re all so cute and funny. I’m just saving them all up and going to keep sharing them. Dalia, if you give her a new object, like I remember the first time she got a kiwi, she had this huge smile on her face. She was so excited and carried it around for a day. Kids are funny.
Janet Lansbury: Yeah, I mean, they see the beauty in things. They see the specialness in things that we just don’t. And the way that you were able to find humor and help people find humor in a way that’s so delighting in children, the fondness for them that comes through that. Instead of that really common way to laugh about children that’s not respectful, that’s laughing at them for having strong feelings about things that we wouldn’t have strong feelings about and being upset, or laughing because we’re doing silly things to them to get a reaction. People that know me know I’m very against that stuff and I’m told I have no sense of humor when I say that that’s not okay. But what you’re doing is, to me, the opposite, it’s delighting in children. It’s seeing ourselves in them. And I think anything that helps us to relate and see the humor and that adoring laughter around them is-
Loryn Brantz: Yeah, it’s so important to laugh with your child and not at them. I have a really clear memory from when I was a little kid. We were at the nursery at the hospital, because my dad was working there, and one of the nurses was showing me the baby, and I thought she was offering me the baby to hold, so I put my arms out, and she laughed so hard and I was so embarrassed. I remember feeling humiliated. And in retrospect, she probably just thought it was really cute and was laughing, but I think about that and I try to make sure that when I laugh at what Dalia’s doing it’s more with her and appreciating her. And I tell her that. So I’m not making fun of her, because they really, they get it, they’ll understand if you tell them.
Janet Lansbury: They feel what you’re seeing in them. It sounds like all along you have seen her as a capable person with these disabilities. Everything I’ve seen you post shows that you see her that way. So that’s what she feels, that’s what she feels about herself, that she is a person who’s capable and can do things, and she’s just going to keep trying, and not that you’re pitying her or feeling like she can’t do it anything and you’ve got to do it all for her. That outlook is just invaluable.
Loryn Brantz: Totally, I’ve always felt like she’s a little person and I respect her, and I talk to her the way I would talk to a friend that I respect. It’s so important to treat her kids with respect, and then they become little respectable humans.
Janet Lansbury: Yeah, and you always hold the space for her to show you that, that she can do things, and that she’s… I don’t know, it’s hard for me to explain in words what comes across from you in the way that you see her and your relationship with her, but that’s really what I was so struck with that made me want to have you here to share with us, or just for me to spend time with you, to be honest.
Loryn Brantz: Thank you. When I talked to Humans of New York I did not expect the huge reaction that it got at all, I was just telling our story, and I was so happy to share it. So many parents with kids with disabilities reached out to me to say it’s hard for them to put into words why people shouldn’t feel sorry for them, or this or that, and they felt like I expressed it, and it’s something they can point to. It was just so meaningful. I didn’t realize that it would be so helpful, so I’m really glad. I’m just really glad it all worked out like that.
Janet Lansbury: Yeah, it absolutely is helpful. And this part where you said, “Everything in my life just makes it seem like I meant for this child,” that acceptance that you have of her, that’s where everything stems from for a child, that we want the child we have, we accept the child we have, and it’s not easy for most of us. Maybe it’s easier for you, but parents struggle with that. No matter what the issues are with their child. They could be a very typically developing child that just has personality issues that the parent is not happy with, maybe because it’s showing them something about themselves.
Loryn Brantz: True, yeah. I think people have a natural level of optimism and acceptance, and I’ve been lucky to be that way. At my wedding my dad was talking about how I could take care of a pet rock. I love people and things, and I knew I would love whatever my child is like, but then meeting her in person really drove it home how everything… it just makes sense.
Janet Lansbury: And that is the formula for happiness as a parent, that you accept and actually genuinely enjoy your child for who they are. And that we feel that way about ourselves too, which maybe has to come first, I don’t know. Or maybe it can go the other way, that our child inspires us to accept ourselves more.
Loryn Brantz: Yeah. We’ve just been talking on my Instagram page about body positivity and how we show that to our kids, and then they can take it in to themselves. I know a lot of moms have been commenting that they accepted themselves more after having a child because you see yourself through their eyes, and my daughter doesn’t think that my pants are making me look bad, or this or that, she just wants to hug me, and I’m her squishy, warm mom. All the body stuff can get very minimized in the process of becoming a mom.
Janet Lansbury: Yeah, I think you’re talking about what children teach us: that things that we thought maybe mattered don’t matter at all.
And then you’ve got this book! You had another book before this newest one?
Loryn Brantz: Yes, I have a couple of baby books. Feminist Baby, my first baby board book, it’s about a feminist baby.
Janet Lansbury: Was that before you became a mom?
Loryn Brantz: It is, and I can tell you how I thought of it because it was a very specific moment in time also. I was looking for a baby shower present for my friend, and I went to Barnes & Noble and I asked, “Oh where’s the feminism for baby section?” And they were like, “That’s not a thing,” and I was like, oh my God. So I literally ran home and drew it and wrote it within a few hours, I was so excited.
Janet Lansbury: Oh cool, I want to see that.
Loryn Brantz: Yeah, and other than A is for Activist (which is an amazing book), it’s the first feminist-focused baby book ever, which I’m really proud of. And a lot of other people were looking for that, because it did pretty well.
Janet Lansbury: And then you’ve got this book called It Had to Be You, and it’s about your experience with your daughter, right?
Loryn Brantz: Yeah, it’s so many things, not just the journey of meeting her and how unique she is and how it felt like it had to be her, but even the process to getting pregnant. We had infertility issues. I had a miscarriage. And it’s just such a long journey to parenthood sometimes, and the way you meet your child, getting to know them, and realizing that it’s so meant to be, is what inspired it. I actually wrote it shortly after she started taking a few steps, and I was just feeling really inspired and amazed. We worked so hard to get her to be able to do that.
Janet Lansbury: Because you were told she might not, right?
Loryn Brantz: Oh yeah. I love her therapists. I genuinely think of them as angels sent to earth to help her, they’ve just been helping us all through the way. But when she was really little and we were trying to get her to crawl, we were very worried parents, we’d ask, “Do you think she’ll walk?” They’d be like, “Well, I’ve seen miracles happen, so it’s possible.” That is not what I wanted to hear, but I guess it’s better than having too high expectations. But yeah, we didn’t know.
Janet Lansbury: So then you were surprised when she actually did it on her own?
Loryn Brantz: Yeah, the process to getting her to crawl was excruciating in a lot of ways. Therapy, it’s really hard work for the babies, and she’d be crying, and we’re really just holding her in positions, they’re not painful positions, it’s just a position she doesn’t want to be in, her arms don’t really go that direction, but just holding her arm gently in a position where she’d be screaming, and we kept having to do it until it got more comfortable.
Janet Lansbury: So just in small doses.
Loryn Brantz: Yeah, small doses every day. Of course, once she’s able to start doing things she’s so much happier, but the process is so exhausting. I didn’t know if she was going to crawl, it was really hard to get her even into that doggy position, but little by little. I see my friends, they post on Instagram, “Woke up and my kids crawling today,” or, “Looked over and my kids standing up,” and I’m like, wow, what does that feel like? A lot of the getting Dalia to crawl and walk was with snacks. I’d have a fanny pack with Cheerios in it and I’d be like, “If you can get to me, here’s a Cheerio,” which is not something I ever wanted to do as a parent, and it to me seemed like maybe some food issues would come up, but it was the best thing to get her moving. And she doesn’t seem to have food issues now, but she was really little, a lot littler when this happened.
Janet Lansbury: Yeah, I think if you’re just using it for that kind of thing, you’re not bribing her to be nice to you, or anything.
Loryn Brantz: Yeah, no, it was a very different experience.
Janet Lansbury: Very different. But yeah, we also see our children struggling to gain those motor skills, but it’s like nothing compared to the struggle that Dalia’s had to endure. Children, it’s not that they want to be uncomfortable, but they want to push through, and sometimes there is struggle involved, but also they don’t expect life to be easy. They come in expecting whatever happens, and then that teaches them what to expect, and they can really inspire us that way, that they keep going and keep trying.
Loryn Brantz: And her therapists were so helpful with that, we were so lucky. Her physical therapist is a very strong person. It was really hard for me as a mom to see her struggle, hear her crying, and she would just be like, “This is good for her, I promise, this is normal, this is what happens when we do physical therapy,” and a lot of times I would just hide during the sessions because I just couldn’t handle seeing her struggle.
Janet Lansbury: Yeah, you adore her, it’s clear, you’re totally smitten with her.
Loryn Brantz: And it’s funny, she’s done so much physical therapy and all this stuff growing up that she loves working out now, and anytime she sees anyone working out anywhere she goes over and tries to mimic what they’re doing. She loves little classes and exercises. It’s just a part of her nature because she’s so used to having to work out a bunch of times a day.
Janet Lansbury: What’s most challenging right now?
Loryn Brantz: Most challenging… we just got through a bunch of health scares that were different than what we were used to, which is more neurological, motor skills, and this sort of stuff. She had TEC, which is she wasn’t making hemoglobin on her own. I did find those health scares and struggles a lot more difficult to deal with than what we’ve dealt with before. We’re always worried something’s going to come up because she has such unusual genetic makeup, and we don’t really know what to expect.
But other than that she’s doing great, she’s making oxygen again herself, so we’re really happy, and I think the health stuff is so much scarier. Even if she wasn’t able to walk, as long as it seems like she’s feeling good, that would be fine, but health danger is really scary.
Janet Lansbury: Of course, yeah.
Loryn Brantz: You know, this good with this bad… I think a good microcosm I could relate it to (I was just thinking about this), is like when you get a cold. I always forget what a cold feels like until I have one and then I feel like: oh my gosh, this is the worst, I should really appreciate it more when I’m feeling healthy. Parenting a child with disabilities or health problems, it’s like that. When she’s feeling good, those days are so much more meaningful and happy and exciting. I’m just over the moon just to walk with her, smiling, it just amplifies everything.
Janet Lansbury: The gratitude.
Loryn Brantz: Yeah, the gratitude is huge.
Janet Lansbury: Well, I’ll be thinking good thoughts for you, and I hope we do keep in touch. I’m reminded of… I think my favorite part of your book… you say at the end, “For every one of our wishes, for every bump along the way, now that you’re here, we’ve known all along, it had to be you.” I love that you acknowledge that it’s not easy, and there are bumps, and it’s not just all this perfect, magical-
Loryn Brantz: Yeah. It had to be this, whatever this is, it had to be this, had to be you.
Janet Lansbury: Yeah, and it had to be the bumps, those were part of it, not something to forget or put away or see as something we should feel bad about, you know?
Loryn Brantz: Exactly. You know, my dad is one of my heroes, and I always thought of his Tourette’s as almost a good thing, I just think it’s amazing, I know it’s really hard on him in a lot of ways, and it’s hard in society, like people give him looks and stuff when we’re walking, but just everything he’s overcome, and the way he is, it’s kind of how I see Dalia. I see her disabilities and her uniqueness as part of what makes her so amazing and special, and anything she does is going to be even more amazing because of everything she’s had to go through to get there.
Janet Lansbury: Wow. All right, you’re going to leave me in tears of gratitude for you, and yeah, just the beauty of you. So you take care of your beautiful family, I know you will, and it sounds like you’re all really blessed to have each other. Thank you so much for being here to talk to me today.
Loryn Brantz: Thank you so much for having me.
And please check out some of the other podcasts on my website, janetlansbury.com. There are many of them, and they’re all indexed by subject and category so you should be able to find whatever topic you might be interested in. Both of my books are available in paperback at Amazon: No Bad Kids, Toddler Discipline Without Shame and Elevating Child Care, A Guide To Respectful Parenting. You can get them in eBook at Amazon, Apple, Google Play or barnesandnoble.com, and in audio at Audible.com. Actually, you can get a free audio copy of either book at Audible by following the link in the liner notes of this podcast.
Thank you so much for listening and all your kind support. We can do this.