Para-mom
When Leah Nixon woke up in the hospital after a construction accident and learned she was paralylzed from the chest down, she wondered how she’d go about starting a family someday. In this episode, she gives us a glimpse into her daily life as a “para-mom” to her 9-month-old daughter, Ellie.
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Leah’s company is called Tiny & Snail and they make adorable cards and stationery.
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Transcripts may not appear in their final version and are subject to change.
Leah Nixon (singing to baby Ellie): “You are my sunshine. You like this book? You are my sunshine, my only sunshine, you make me happy when skies are gray. You'll never know, dear, how much I love you. Please don't take my sunshine away. Please don't take my sunshine away.”
I’m Nora McInerny, and this is “Terrible, Thanks for Asking.”
When you first met Leah, it was March 2021, and we were interviewing her about the accident on a construction site that left Leah paralyzed from the waist down. Leah was -- Leah still is -- a maker and a crafter. She has an adorable greeting card company with her sister called Tiny & Snail. And she’s also, according to my armchair diagnosis…an incurable optimist.
Leah Nixon: When I woke up in the hospital, I know my first question was, "Can I still draw?" But then a second question that I asked fairly early on was, "Can I still have kids?" And they told me, like, “Well, you know, luckily your reproductive system is still intact, like, nothing happened to it. And so, yeah, like, paraplegics can have kids and they can have natural births.” Paraplegia is actually harder for men in terms of having kids again, but for women, it's not really an issue.
Leah always knew she wanted to be a mom. And yes, there are so many paths to motherhood … but hearing that she could carry a child herself was the best possible news that Leah could have woken up to, next to being told that yes, she could still draw.
Leah Nixon: Honestly, I think my body is just made to have babies, sort of. My grandmother actually had 12 kids and two sets of twins.
Leah is not like the rest of us, and I’m not saying that because she’s paraplegic. I’m saying it because she is truly wired differently than anyone I have ever met. I am the kind of person whose day will be ruined if the wifi router craps out. And Leah is the kind of person who can have her entire life altered irrevocably and say this:
Leah (from 2021 episode): I had a thought one time, like … if somebody offered you a once in a lifetime experience, like, you would get the front row seat to this crazy thing that's, you know, history-making, you just have to say yes. Like, are you going to do it? Yeah. That's basically what it is to, like, wake up with a spinal cord injury is, like, “Oh, wow, I get to experience something that very few people get to experience.” And like because I'm at this point in history, I will potentially get to see, like, a resurrection of sorts for my body. Like, what would it be like to be like, you know, working on walking again or something like that and actually have hope. And, you know, prior to World War II, I think most paras only lived about two years after their accident. I don't know. I just feel super privileged, actually, for the most part.
Leah sees her paraplegia as a grand adventure and a privilege — and what could possibly be a bigger adventure and a bigger privilege than having children? And in 2021, that adventure begins: Leah and her husband Kelsey welcome their daughter, Ellie, to the world.
Leah Nixon: I prayed for two things. I prayed that I wouldn't have twins. Also that, well, this is embarrassing, but that she wouldn't get Kelsey's bowels because he, like, farts a lot. [laughs]
Every pregnancy is unique, every birth is unique, every child and mother is unique … and also at their core kind of the same. But this adventure is new to Leah, and new to us, and might be new to you, too. So today, we’re listening in as Leah becomes a mom – or, as she puts it, a para-mom. We’re following along with her family of three.
And we’re starting right around the eight-month mark, when Ellie is about to arrive.
Leah Nixon: I could feel her moving when I touched my belly with my hand. I could feel a baby moving around. But other than that, like, I couldn't really feel much with my abdomen. I couldn't feel anything. It was really hard because near the end, Kelsey was picking me up to transfer me instead of me doing my own transfers. So I kind of, you know, was sitting in bed quite a bit. And I asked my mom to bring over a CamelBak that we have so that, you know, I could drink a lot of water when I was sitting in bed. And one morning I was sitting in bed and I just, all of a sudden I was, like, sitting on a pool of liquid. And I was like, “Oh, no! Like, my water just broke.” And then I realized it was the CamelBak that had been leaking. [laughs] And I just, like, cracked up because it was just so funny. Pregnancy went really well. Right around eight months, I thought, “Well, you know, this weekend I think I'll pack my bags for the hospital, get that ready and stuff.” Then one morning I wasn't feeling the greatest. And paraplegics often have UTI problems, which can actually lead to labor. And so I was thinking, “You know what? I think maybe I'm at the point where, like, this UTI is, like, maybe causing contractions or something.” I couldn't feel the contractions. But we ended up calling my O.B. and saying, like, you know, “I haven't been feeling great. Like, maybe I need something to treat the UTIs so that this baby doesn't come early.” But she said, “Why don't you just come into the labor and delivery department, and we'll check it out?” So I went in, and she said, “You know what? I think this baby needs to come today.” And I was like, “Oh! Okay. I didn't even pack my bag yet. I wasn't hoping for this.” So it was about a month early.
It wasn’t part of the plan, but it was happening, and Leah’s doctor broke her water for her to get the labor process started.
Leah Nixon: I was in labor for 36 hours. And because of where my spinal cord injury is – it's at T-4, T-5, so like, it's about armpit level – with people who have a break above T-6, you have a phenomenon where, like, if your lower body is in pain, it spikes your blood pressure, and then you can kind of tell that something's wrong. And so I get this all the time. Like, my body's just very sensitive. And so I notice, you know, blood pressure changes quite a bit and stuff like that. So they wanted to give me an epidural because that would keep my blood pressure down. And it can be dangerous if your blood pressure is up too high for too long. It could lead to a stroke, or something. So they tried to give me an epidural three different times, but I found out because of that, that my spinal cord has grown a lot of vascular tissue. So I didn't even know that was a thing until that moment. But some people's spinal cords after an injury grow this vascular tissue, and science is unclear right now whether it's good, like a protective sort of mechanism, or if it's, like, kind of bad and it would prevent, you know, a spinal cord regenerating or something like that. So they weren't able to do an epidural. So I was getting IV fentanyl every three hours, I think? So basically when my blood pressure would shoot up, I would get a headache. So every contraction that I had was sort of manifesting as a headache — so I don't know, I don't know what contraction pains are like, but I know what a headache is like. And, you know, it was not the most comfortable thing, but it was okay.
Leah breathes through the headaches and the contractions. Her husband and her doula are there by her side.
Leah Nixon: And she said, “Oh!” you know, “You're actually doing something.” And so she went out in the hallway and got the nurses to come in. And then they were talking about how to deliver the baby, and they were going to use some forceps to try to help get the baby out. And so they decided to do an ultrasound to sort of, like, see the position of Ellie and stuff. And then they realized that Ellie had been putting so much pressure on my bladder that my bladder wasn't able to be draining. And so that was sort of the holdup. [laughs] Plus, Ellie was face up, so that didn't help anything. Then when they got ready to deliver, the room was full of people – I think partly because the baby was early and so they wanted to make sure there was enough NICU nurses there. And I think part of it was maybe curiosity, because like it was kind of an unusual thing to have a para giving birth. So the doctor said, “We're ready to go.” And I went, “AHHH!” and they were like, “What? What!?” And I said, “No, I'm just so excited! Like, let's do this.” And I'm like, really excited to meet the baby. So, yeah, then Kelsey was on one side and the nurse was on the other, and the nurse was, like, telling me when to breathe and push. And it was really cool, because with my breath I was able to, like, actually be pushing. And that kind of surprised me and everybody else. And the doctor was like, “You must have a pretty good lung capacity.” And I was like, “Well, I used to run marathons.” And she was like, “Oh, here I thought you were normal or something.” I really liked her. She was very, like, game, you know? To just deliver in this unusual circumstance.
An unusual circumstance, and such a beautiful one.
Leah, who wasn’t sure that she would ever be able to have children after that construction accident, starting her next grand adventure, so excited to meet her child, the doctors and nurses craning to get a glimpse of Leah delivering a baby naturally when she can’t physically feel anything happening below her chest.
Leah Nixon: I think being pregnant actually made me feel really good about my body, because it was like, how incredible is this? Like, I still get to, you know, carry a baby and like, my body is still useful for some things. [laughs] It was a really easy pregnancy in general. I am on medications that the doctors were sort of worried about. But Ellie is totally normal, and like, it's so beautiful.
We’ll be right back.
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Leah Nixon (playing with Kelsey and Ellie at home): I think she's getting pretty tired.
Kelsey: I'm just trying to wear her out. If I wear you out all the way you're gonna sleep better. You’ll sleep better, won’t you? [baby crying and fussing, Kelsey playing]
Leah Nixon: But basically as soon as she starts rubbing her eyes, I think it's a good time to put her in her sleep sac.
Kelsey: Think so?
Leah Nixon: I think so. Because otherwise I think sometimes she gets, like, overly tired and then she has trouble falling asleep.
Kelsey: Ohhh yeah. Okay. Should we try to sleep sac?
Leah: I don't know. I mean, have you seen her rub her eyes?
Kelsey: She just did. Didn't she?
Leah: Oh, I don't know. No, I don't think so.
Kelsey: Oh, maybe not. Are ya not ready yet, then?
Leah: I don't know. That's sort of the cue that I look for.
Kelsey: Well, I usually, I don't know why always think, “Oh, I'll get her really tired.”
Leah: Yeah, I just. I don't think it works that way.
Kelsey: Yeah, you're probably right. Because when I get really, really tired …
Leah and Kelsey are first-time parents to their daughter, Ellie, who you just heard fussing very sweetly in that clip. New parenthood is a blur: you’re learning a baby, you’re learning a new role, you’re learning to see your partner in their new role, you’re hungry, the baby’s hungry, you’re tired … the baby’s not? Why isn’t the baby tired? Why isn’t the baby tired when you’re tired?!
This is the gauntlet that every new parent survives. And for Leah, she’s running the gauntlet in a wheelchair.
But that’s not even the hardest part.
Leah Nixon: The hardest thing right away was breastfeeding. And I have heard other moms saying it doesn't come as easily as you might expect. And I think partly because she was a month early, like, we did really struggle. We were doing triple feedings for like at least two or three months, which means that you try to breastfeed, then you feed them with a bottle, and then you pump, and then basically an hour later you start the whole thing up again. And it's like, I wish somebody would have just told me like, “No, just, like, let her nurse as much as she wants to, because that's going to, like, up your production and stuff like that.” So like, I think I got that advice a little late, maybe. I wish I would have heard, you know, “Maybe just, like, let the baby do her thing” a little bit earlier. But in the way beginning, she was pretty tiny, so it was kind of hard for her to latch on and everything. I was, like, obsessed with milk production for, like, well, until recently actually. We got to a point where, like, there were a few days where she was completely breastfed, which was so great. Like, it's something that we both worked at for a long time to get to that point. And so, like, if there are moms out there who have just stopped trying, I totally get it. It was exhausting. And like, you know, it was the only thing I was really thinking about 24/7. And actually, like, then we started nursing in bed all night, and that's when the sore on my butt really became an issue. So eventually I ended up in the hospital, because my bone got infected. And so, you know, it's funny because, like, I can't feel it. So like, it's kind of a blessing and a curse, you know? It's like, “Yeah, I can't feel it. But also, if I felt it, maybe I wouldn't have gotten to that point.” They stuck me in an MRI machine, and my bones were, like, glowing in the image, which is a bad thing. So I ended up in the hospital for I think it was, like, five days, and kind of during that time Ellie just … weaned. And she hasn't really been interested in nursing since, which was sort of a sad thing because, you know, I worked so hard at it, and then all of a sudden it was gone.
Leah and Kelsey are both designers and makers by trade, which makes them well-suited for figuring out solutions to issues that a lot of people wouldn’t even identify as problems to begin with.
Leah Nixon: I guess one of the things that I've been obsessed with, other than milk production, was trying to figure out a really good way to carry her, because like, a normal baby carrier doesn't exactly work. So I actually had a pillow called My Breast Friend Pillow. One of my friends got it for me for a baby shower gift, and it was so valuable. I kind of like rigged up a system so that she wouldn’t roll off the pillow as I was rolling around. But, like, it worked really well for us for at least four months, maybe. And then now I have a different … harness, sort of. Because I have an amputation on one side, my lap is a little unbalanced. So there is a product called Lap Baby, where you kind of wrap something around yourself, and then it's like a simple Velcro band and clip, and that works pretty well. But I think because of my lap unevenness, I found something that's more supposed to be for like a travel highchair. It’s just a piece of fabric kind of, and I've modified it so it just, like, hangs off of my wheelchair. And it's really easy to, like, clip on and off and just have on my person at all times, because that's probably one of the funniest things is like, you know, unlike, an ambulatory person, I can't, like, scoop up my baby and walk into the other room. If I scoop her up, I'm like doing this one-handed sort of weird rolling through the house. [laughs] And our floors are a little uneven, so it's like sometimes there's like a spot where I just like, can't quite get enough oomph to go further. But anyway. I've just, like, tried to figure out the perfect solution, you know, for carrying her around. And that's something else that I've learned, too, is like, every stage happened so quickly that even if you find out like a perfect solution, it's not going to last for very long. I've spent quite a bit of money on different types of carriers, partly because, like, my thing is like … if I'm able to pass this information on to other wheelchair parents? Amazing. Like, that's my goal pretty much is that I can help find solutions for other people too.
Leah (as she’s putting Ellie to bed): You are my sunshine. You like this book? You are my sunshine, my only sunshine, you make me happy when skies are grey. You'll never know, dear, how much I love you. Please don't take my sunshine away. Please don't take my sunshine away. Okay. Ohhhhhhh. Are you tired? Yeah. It’s been a long day for you. Yeah. Okay, let's sit down. Let's lay down. What should we thank God for today, huh? [Ellie fussing.] Ohhh, it's okay. Oh, I bet you want your bottle, don't you? Here. There you go. There's Sadie. And let me go grab your bottle, okay? Hold on. Hold on. [Ellie fussing.] Here I am. Okay. Here's your pink blankey. And here. Do you want this? Are you sure? Okay. Let me turn off the light. Ohhhh. Do you want some Tylenol? I think it's been a long time since you've had Tylenol. Let me ask Dad, okay? Maybe we should give you some Tylenol. [dog barking] Hey, Kelsey?
Ellie and Kelsey (playing piano together): [piano scales – with Ellie plunking random keys throughout]
Leah Nixon: Oh, man. It's so nice to just spend time as a family. You know what I mean? Oh, I know that you have work to do. I have work to do too. But if this isn't what you really actually live for, you know?
Kelsey: Yeah. Yeah. That's true.
Leah Nixon: Like, if you're always just obsessed with work, then it's hard to have these moments.
Kelsey: Enjoy the fruits of your work.
Leah Nixon: I guess a good way of looking at it is that, like, it's almost like a math equation where you have to figure out, like, which parts of your life matter? Shoot.
Kelsey: You’re trying to say, like, what you want to put your time into– your time and money into?
Leah Nixon: Well, it's sort of like, you know, some people have the philosophy that, like, you know, they could die tomorrow, so they take vacations now. Where some people, like, are so dedicated to work that they, you know, they prioritize that and then, um, they miss out on these moments because they're waiting until they're retired.
Kelsey: Right. Right.
Kelsey (as he plays with Ellie): All right, Ellie, what's next? Are we gonna do a bench? Or do you just wanna sit there for a second and relax? Just chill? Just chill for a minute? [Ellie babbles.] [Kelsey babbles back.] You keep kicking me in the face. That’s not very nice. Hey! Hey, you up there! Stop kicking me in the face! Were you goin? What, you looking at a doggo? Is there a doggo down there? Now, what are you doing? Ooph!
Leah Nixon: He is an amazing dad. I don't think I really could do it without him. So I'm really, really glad that we've been able to be at a point in our lives where we can make it work. Like, he was furloughed a few months before I gave birth, or like maybe a month before I gave birth or something. So it was sort of like he had paternity leave. You know, we weren't bringing in money, but we were able to just make it work for a while, and now he is in a Ph.D. program. So he's getting some money from that and just random jobs. He just had such an amazing attitude, like, bringing her into the lab with him, and he's like, “You know what? They're just going to have to be okay with it, because this is the way it is.” And so I think Ellie is actually going to get a really interesting education as she grows up.
Leah Nixon (voice memo from home): So it is 8:16 p.m., and Kelsey said he needed a nap. He is kind of overwhelmed with all the work he has to do, and I think just all of the medical appointments that I've had recently, he has to be there for all of them, because he helps me transfer. And so, yeah, he's been dealing with me and a Ph.D. and a 9-month-old daughter who's been sick for like the last two days. I don't know. He deals with a lot. But he said, "Wake me up at 9 with a cup of coffee." So I guess he plans to get some work done still tonight. But I am putzing around in the kitchen. I just had a moment where I feel a lot like my mom. She is a stay-at-home mom, and I think that she did so much for our family growing up that I didn't even think about as sacrifices, I guess, that she made. And one of those things I think was cleaning up the kitchen at night, and she'd really, like, she was good about wiping the counters clean and having it kind of ready for the next day. And anyway, so … I wanted to go paint, but here we are. There's a sink full of dishes. And I, um, I'm going to do what my mom taught me how to do, which is make a cup of tea and do some dishes and then maybe read or something and just enjoy being a mom.
We’ll be right back.
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We’re back. And Ellie is nine months old.
Leah Nixon: When my accident happened, I called it my re-birthday. And I feel like I started over zero again. Like, I couldn't do anything for myself when I was in the ICU. I couldn't even, like, lift my head up. And so, you know, kind of going through the process of growing up again fairly recently, I think it really allows me to, like, know what Ellie is going through in terms of … like, she hasn't managed to sit up on her own from, like, lying on her back to sitting up. And I'm just like, ugh, I'm just so curious to see how she does this because, like, the body mechanics, I don't quite remember it anymore. I think when you are fully able-bodied, you just kind of do things without analyzing how you do things. And, you know, after not being able to control, you know, your abdomen and legs, you kind of ... the body mechanics are definitely something that takes more mental energy to try to figure out. And so being able to think of what she's going through in terms of development of physical strength, it's like, “Oh my gosh, she can hold her head up now. Like, I remember just being able to do that again!” I couldn't talk right away in the ICU because, like, I had tubes stuffed down my throat, so I understand, like, the thirst for communication. So I guess maybe I just relate a little bit more maybe than other moms might. She's very proud of herself that she can, like ... she has a big bottle now. You know? We got this bottle as a baby gift. And at the time when she was a baby, I was like, “She's never going to use that eight ounce bottle. Like, that's ridiculous.” And now she just, like, drinks, like, ten of them a day or something, and I was like, “Holy shit.” Oh, but food is very exciting. Like, she's a really good eater, and she'll try spicy stuff. She has two little teeth on her bottom, and it's so cute. And she's just a joy for the most part, a very happy baby. And now, because of my pressure sore, I have a pump that is attached to my body all the time that pumps in I.V. antibiotics, which is so cool because like, before these existed, you know, I probably would have had to be in the hospital for six weeks getting these antibiotics. But now it's just like I can roll around and do my life. But we have to go in every morning to get the antibiotics changed out. And the nurses just love seeing her. Like, it's the highlight of their day. [laughs] Whenever, whenever she's asleep when we go in they're just like, “It's not fair.” She is such a people person, which is really fun. So like, she just loves it. She just soaks it all up.
There isn’t a single person on this earth who makes it through life completely alone. We all need support from friends and loved ones and communities sometimes … even if most of us are NOT good about asking for it.
But again, Leah is … not like the rest of us. She’s not afraid to ask for help – whether it’s advice from other para-moms, or help from Kelsey, or support from her own mother.
Leah Nixon: In the beginning in the ICU, I didn't want anything to do with paralyzed people. Like, I was just like, “No,” like, “I don't feel paralyzed. My brain is just as vibrant as it was before. And so, like, I relate to, you know, my family and everybody just as much as I did before, and I don't want to talk to people who are in wheelchairs.” But then, you know, throughout rehab, then I started to talk to these people and I was like, “Oh, my gosh. Like, this is actually really nice to be able to talk about nerve pain and have somebody know what it feels like. And just like, how do you make a house accessible and how do you deal with this problem or that problem?” You know, honestly, it isn't that different being a mom in a wheelchair. And so I think in general, most of the advice that I've taken as a mom is just from, I don't know, quote unquote, “regular moms.” It is really nice knowing that I, like, am competent enough to take care of her on my own. And I can put her in her highchair and get food ready for her. And I think getting the house to a point where I feel totally capable of taking care of myself, like, it's really great, and then I can take care of even a baby. I think that was one of the things my mom was most afraid about after I had the baby was just like, “You can't do this on your own.” And now, you know, pretty quickly, she realized that I could do it on my own.
Leah Nixon (voice memo from home as she and her mom put a crib together): So my mom and I are building doors for Ellie's crib. And we went to the hardware store and my mom just helped cut all of the pieces. But I'm always nervous planning things out ahead of time because I'm not the one dealing with the consequences later. [laughs] So ... it's a little nerve wracking trying to plan it out all in my head and then seeing if it works out in reality. But anyway, here we go. So we're going to use a kreg jig for this.
Leah's Mom: You found it?
Leah Nixon: Yeah. So basically, this gets cramped onto here and then ...
Leah's Mom: Here. Turn it. Does it matter which side?
Leah Nixon: Um, I need to figure out where this should be at. [sound of construction noises and birds chirping]
Leah Nixon: Let me figure out this measurement thing too.
Leah's Mom: Do you want any tea?
Leah Nixon: Sure.
Leah Nixon: Yeah, okay, I'm going to try this and see what happens. It’s always an experiment with this kreg jig. [sound of drilling noises] Obviously we'll have to vacuum.
Leah's Mom: Aha! Just a little bit. [more drill noises]
Ellie will soon start walking, and Leah works out of a home office running her small business. She gets asked all the time: What are you going to do when that kid is able to run around, and you can’t run after her? What about this … what about that … what about … what about …
But Leah isn’t worried. Because whatever that thing is, it’s just the next adventure.
Leah Nixon: I think other people are more afraid of things than I am. I'm just kind of like, know what? We're going to figure it out when the time comes. Like, we just haven't gotten there yet, but, like, we'll figure it out. And then other people are like, “What are you going to do when she starts to walk?” And I'm like, “I don't know. I'll put her on a leash on my wheelchair. I can have her pull me around.” It's going to be so interesting to see when she realizes that I am in a wheelchair and other moms aren't, you know? Like, I don't think she comprehends that yet. But we've already started to have to work as a team because, you know, like I ... I can take care of her on my own at home. I can pick her up off the floor by myself. Like, I just feel like a momma elephant, sort of like wrapping my arm around her and, like, lifting her up. And I can put her in her bouncer and in her high chair and lift her out again. But for me, it's sort of like I talk through it with her like, “Okay, are you ready to help transfer now?” And it's like, “Okay, lift your arms up.” And, you know, it's sort of like an ice skating routine or something. [laughs] I don't know. It’s like, “All right. Okay. One, two, three, jump!” It's funny that I have like the words like, “Okay, now we're going to do this transfer,” or like, “Oh sorry, that was a little bit of a weird transfer.”
Leah (voice memo from home): Ugh, my brake is so messed up on this side. Fuck. The teakettle is also messed up. And, uh, its thermostat is weird, I think. It doesn't come to a complete boil unless you have your finger pressed on the button. Ugh. I feel like sometimes that's what our lives are like, is just everything is somewhat broken and needing love and repair [laughs]. But it's just so hard to keep up with. But I guess that's just what it means to be human, I suppose.
That’s just what it means to be human. The things that don’t kill us can make us smaller or stronger, they could wreck us completely or force us to build something out of the wreckage. The teakettle will stop boiling, the brakes will go out, our bodies … oh, our bodies are just so fragile and so miraculous.
And the luckiest among us have each other. Have a light in the darkness, or become that for someone else.
Leah described her injury as having a front-row seat for something that is history-making, an experience that most people don’t get to experience.
How lucky are we to have a seat in the balcony, to watch -- or hear, I guess -- her and Kelsey and Ellie be so beautifully human.
Leah and Kelsey singing to Ellie at bedtime: Please don't take my sunshine away. You are my sunshine. My only sunshine. You make me happy when skies are gray. You'll never know, dear, how much I love you. Please don't take my sunshine away. Please don’t take my sunshine away.
CREDITS: Nora McInerny, Marcel Malekebu, Jordan Turgeon, Megan Palmer