Dear Mamas Episode 8 Transcript: Disability and Chronic Illness

In February 2016, Emily Writes and I started a parenting podcast called Dear Mamas. Our manifesto is no bullshit, no judgement, and we hope to build friendship, support and community. As of this episode, we are very excited to be part of The Spinoff family of podcasts, and we have a sponsor – Little Big Crate, delivering gorgeous threads for your little big person, right to your front door. You can subscribe to the podcast in iTunes or Stitcher, or listen on The Spinoff Parents. I’ll be posting transcripts of each episode here for anyone who’s unable to listen. Huge thanks to @ninamingya for this transcript.

In this episode we discuss parenting through disability and chronic illness – both when your child is unwell, and when one of the parents is. We are joined by Tessa Prebble of The One in a Million Baby blog and podcast who shares her story, and that of her daughter Eva. If you haven’t already, go and subscribe to her podcast right now.

This episode includes discussion of the loss of a child, so please take care when listening/reading if you need to.

Holly Walker: Kia ora and welcome to another episode of the Dear Mamas podcast, now also known as The Spinoff Parents Podcast. I’m Holly Walker and I’m here with Emily Writes.

Emily Writes: Hi.

HW: We want to start off by thanking our sponsors, Little Big Crate.

EW: Yeah, Little Big Crate are amazing—we’ve told you a little bit about them in other podcasts but in case this is your first episode that you’re listening to, Little Big Crate was set up by two mums Melanie and Annette after the birth of their daughter and they send out packages of beautiful New Zealand designed clothes, they’re just totally gorgeous. I’ve had them sent to me, I was just in love with every single piece. They send it out to you, you have a look through, decide which ones you want to keep for your baby and then you send back the ones that you don’t. It’s so easy, you don’t have to go out searching for those really special pieces of clothing because they get sent to you. It’s a really great service and I really think you should check it out at littlebigcrate.com.

HW: And one of the best things about it, as well as supporting two mums with their own business (who are also great supporters of our podcast), you are also supporting all the creators and designers who are making these beautiful clothes at home.

EW: Exactly.

HW: We definitely recommend Little Big Crate. So before we get into our topic for today, we thought we’d just have a quick check in to see how everyone’s doing, how much sleep we all had last night, how we’re coping … we’re recording this in December right at the peak of Christmas party season but you guys won’t be listening until new year. But we, right now, are in the thick of that rather stressful time.

EW: I actually love everything about Christmas. I’m a Christmas obsessive. I actually love every single day of December. I just really…

HW: I wish I was like that. I want to be like that!

EW: I’m just trying to stop buying more stuff that I can’t afford because every time I go out I’m like, that’s one little thing … but my husband and I said, this year we’re going to get one big present for the boys because we really wanted to get them a trampoline and that of course is our whole budget for like six months of buying stuff for the kids. We were really lucky, we got one on special at The Warehouse for like $300 or something so we’ve had it on layby and we just paid it off this week. We’re going to set it up on Christmas Eve and then when the kids wake up and come out they’re going to see it! Yeah, so I’m really excited about that. We’ve got a few little things that I’ve wrapped up for them, like little pieces and stuff, so yeah, I’m just really excited. I love that Eddie’s at an age where he gets what Christmas is and likes it, because my husband is a real Grinch and he’s been like … forever, in the time we’ve been together, fifteen years or something, he’s always been grumpy at me about how much I love Christmas. And I used to keep the Christmas tree up all year ‘cause I liked it so much. We can’t have a Christmas tree now because Ronnie pulls it down, so … but my decorations are always shit, like I think everybody thinks if you love Christmas you’re going to have real good decorations and be real onto it but I’m not. Actually I have a piece coming out tomorrow on The Spinoff about how shit my décor is. I saw Home and Garden magazine—I don’t know if I should say this—it’s not a rip off of Home and Garden magazine, but…

HW: Is it like a Pinterest fail?

EW: You know, on Home and Garden it has something like 365 craft ideas and who the fuck is doing 365 crafts? Like, what the fuck?

HW: One a day for a full year …

EW: So I’m like, I’m going to do my own … yeah, I think Eddie is really into Christmas and likes presents under the Christmas tree and he wears festive outfits so I feel like I’ve got my buddy now.

HW: Mm, your Christmas buddy. And … not at your urging, but after reading a piece you wrote I went online with my daughter Esther who’s three and also well into Christmas for the first time this year, to do one of the postcards to Santa on the New Zealand Post website. She goes, “Dear Santa”—oh, she calls him Father Christmas—“Dear Father Christmas, happy Father Christmas, happy Christmas Father Christmas, I love you, I would like a diamond for Christmas!” [laughter] I was like, where did you get that from?! What?! So, yeah. I have to figure out what to do about that. Yeah, a diamond. And I don’t even know if she means like, a big rock … it’s quite possible she means a diamond-shaped piece of cardboard. I have no idea, it’s come completely out of left field.

EW: That is so great. I think that the whole writing to Santa thing is super great. It’s the first time we’ve been able to do that and stuff, and also I’m fucking hammering the “Santa is watching” stuff. Like, I know you’re not meant to do that because it gives your kids anxiety or something but I’m relentlessly being like “Santa’s watching! Should you be doing that?” [laughter]

HW: It’s a gift. It’s a gift.

EW: Yeah, and I actually got sleep last night because I had the Spinoff Parents writers Christmas thingy in the afternoon where I had quite a few bubblies, I think I had more bubblies than everyone else but I was actually fine. But then my husband was going out to watch the Joseph Parker fight at a friend’s house so I got home and was like, “oh no, now I have to do the two kids and stuff” but they had been up since like six in the morning because of the bugs Te Papa exhibition and then the baby just fell asleep at like ten to seven! I got so excited! Then Eddie, who generally goes to sleep OK now these days, went to bed at like ten past seven. I have not ever had both kids to sleep that early.

HW: That’s a miracle. A Christmas miracle!

EW: So I rung my husband I was so excited. I was like, “and I got Ronnie to sleep, he just went to sleep!” and he was like, “well yeah, I gave him medication” because we have medication from our paediatrician because the baby never sleeps and they were like, “maybe if you give him medication occasionally it might restart things” and I was just like, “aw, I’m still happy, but I thought that …”

HW: You thought you did it!

EW: So actually, he like, he still wakes up on the medication but like, he woke up during the night and I just brought him to bed with me and Eddie slept all night! So I actually got heaps of sleep! Pretty good, first time ever! I was like, “I’m going to do all the things today!” because who knows what tonight will be like.

HW: Our guest today is Tessa Prebble of The One in a Million Baby blog and podcast which we’ll talk about a bit more in a minute. Tessa, I know you’re also in the thick of Christmas season, and how are you this morning?

Tessa Prebble: I’m actually pretty good. I feel like I made good life choices last night and I was home by midnight and I knew I was coming here today and that was in the back of my mind. [laughter]

HW: Sorry about that, sorry …

TP: It gave me a really good excuse to not be my worst self at the Christmas party. So I’m feeling pretty good but it was a Christmas party that could’ve been on a TV show. People behaving badly.

EW: That’s so Christmas party, isn’t it … like, all your worst life choices …

HW: I pashed my—actually it was a Matariki party—but I pashed my partner, my now-partner, at a work Matariki party for one of the first times.

EW: That is so funny.

HW: Yep.

TP: No, that was a good life choice!

HW: It was—yeah, it was a good life choice long-term disguised as a poor life choice at the time.

EW: Oh my God, the newsroom parties we used to have were outrageous. Like any party with lots of journalists. But as the newsroom started to get cut and cut … I remember at NZPA they stopped giving us Christmas ham—

TP: Are you kidding?!

EW: Nope, no ham. But the most outrageous party was the end of NZPA party where everybody had a bottle of wine at … what’s that terrible bar on Courtenay Place? That doesn’t narrow it down, does it. Courtenay Place has got a lot of terrible bars. The one on the corner—

TP: I know the one you mean.

EW: Yeah.

TP: It gets such a weird abbreviation.

EW: Yeah. But it’s changed titles a few times but it’s on the corner and it’s …

TP: It’s not Public?

EW: No, not Public. Um … oh well, anyway, it’s one of the messiest grossest places and I was there with like a bottle of Corbyn’s or something really gross. My night ended with me yelling at a Fairfax high-up executive saying he killed NZPA. [laughter] I thought my life was over because I’d been made redundant but then I actually got a job that pays better, so … but yeah, parties with your colleagues … after that night, I made a rule to never party with my colleagues. I had one or two close friends at work and I might go out one-on-one with them but I’d never go to work drinks, really.

HW: Well, once you become a parent you it’s pretty hard to do work drinks.

EW: Oh yeah, you can’t. Yeah, my work Christmas parties are like for the little bits of work I do. I’ve got one on Friday but I’m going to be well behaved.

HW: Shifting gear a little bit … I was trying to think of a good segue into our topic from drunken Christmas parties but I basically don’t think there is one at all. Today we are discussing a collection of related topics that are: special needs parenting, disability in general, and parenting through chronic illness (both when children have special needs, disability or chronic illness and when the parents do). That’s why we’ve invited Tessa, because she probably—definitely—the best blog in New Zealand (maybe the only blog in New Zealand?) about this topic and, internationally, a very well-respected blog and podcast on special needs parenting called The One in a Million Baby. Tessa, do you want to introduce yourself, the blog, the podcast and a little bit of your story?

EW: I should say as well, people will likely know Tessa from her amazing pieces in The Spinoff Parents. You were one of our first writers to sign on and write for us. A lot of people will know you from there as well.

TP: My relationship to special needs parenting is that my daughter Eva was born in 2014 with CHARGE syndrome, which is a genetic syndrome and it’s a collection of conditions, basically. So she was born blind and deaf, she had multiple heart abnormalities, brain abnormalities, she had low tones (so she was quite floppy and things like sitting up would happen at a later time) … she had a whole host of things. She couldn’t eat so she had an NG tube and would have had a G tube put in later on. Yeah, she had this whole host of things. I had already been writing my blog at that point. It was called The One in a Million Baby at that point because I had polycystic ovaries and didn’t think I could get pregnant, or at least that it would be a challenge.

HW: Oh, that’s such a fascinating …

TP: Yeah. Turns out it wasn’t a challenge, it was a week. So [laughs] yeah. But I’d already started writing and things started happening during the pregnancy with scans and things being spotted and so I kept writing. Then when she was born, all these things started popping up. Before she was born, I thought the only thing wrong was going to be that one of her eyes was slightly smaller than the other one so we’d seen an ophthalmologist. But everything else had seemed okay. When she was born, all these other problems came up. It would be an understatement to say that I did not cope very well with this onslaught of diagnoses. I had a ‘fight or flight’ response and mine was to fly. Yeah, I was very panicky and got very depressed and did not cope well.

HW: What had been your perception of special needs parenting and disability before you had Eva?

TP: From a very ableist perspective, definitely. I was fairly ignorant of what that looked like. I didn’t have an idea in my head of what being a special needs parent must be like. I had a lot of pity associated with what that would look like. I sort of thought, “that’s the worst”. And I hadn’t had to have that view challenged because I didn’t know many people who had special needs children, it wasn’t something that I … apart from as a teacher, it wasn’t something I encountered in my life. No one I knew had kids with special needs so I came from a fairly ignorant place, a place of feeling a lot of pity and feeling like “glad it’s not me” kind of perspective.

HW: That’s probably a totally normal way for people to feel who haven’t had that exposure.

EW: I think as well, we have that idea … it’s a real societal, across the board thing. Even if you think about the language people have, like “is it a boy or girl? I don’t care as long as it’s healthy”, you know …

HW: “Healthy mum, healthy baby.”

EW: Yes, and things like … I remember with my second, people would say to me “are you coping, it’s normal” and I thought “normal” was an okay word to use and I think, you know, what you said about pity—I had similar thoughts before having my baby. Like you know, people quite casually talk about things like termination and not wanting to be “one of those” parents and how awful every second of every day must be for them. Stuff like that. That’s a real societal, ableist attitude …

TP: Yeah, even if it’s not acknowledged I think a lot of people if confronted would … I think that saying “as long as it’s healthy”, that really struck me after Eva was born because I went to baby showers and people would say that. I know where that comes from, of course you want your baby to be healthy, of course you do, but what happens if it’s not? “As long as it’s healthy”—well, what if it’s not? Then what?

EW: I remember saying that at my own baby shower, and then when Eddie was born … it just being this lightning bolt when I heard it again in the context of my new existence of just being like … it’s so hard not to say something and be like “you will love it anyway” and it just being this different thing.

HW: For new listeners, Emily, do you want to briefly talk a little bit about … I know you don’t talk in detail about Eddie’s condition when he was born, but—

EW: Yeah, Eddie from birth had breathing issues. It took a while to get a diagnosis but basically he really struggled to breathe for the first two years of his life and he had surgeries and things like that. It meant he spent a lot of time isolated from other children. Something like whooping cough would have killed him. So you have a kind of different view of life around vaccination and putting your child’s life in the hands of other people. Like if people would come in with sick kids and all that. But Eddie’s doing really great now, he’s four and is talking and is a happy, healthy kid who no longer struggles with breathing. But it was a period of real difficulty, of the ICU and stuff and him not being able to breathe on his own and stuff but … yeah, it was a difficult period. Ronnie, my “ham” as he’s known to most people, he had some breathing issues as well when he was little but not to the extent of a diagnosis of a condition in the way that Eddie did, so yeah. But Tessa, do you want to …

HW: We side tracked a little.

TP: When Eva was born, the issues were more serious than … really quite serious. There were all sorts of extenuating circumstances such as my relationship with Eva’s dad breaking down quite spectacularly and fast, and it was just a bit of a clusterfuck of a situation, actually. My daughter Eva died when she was ten and a half months through complications of her condition—so it wasn’t directly from her condition—but after she died, I wanted to create something that would help other parents who were struggling through the same sort of stuff that I’d struggled through. When Eva was diagnosed and when all this bad news was coming in, there are sort of a lot of clichés that you get told in that situation—things like “God only gives you as much as you can handle” or “special children go to special parents” … and I certainly didn’t feel like a special parent, I didn’t want to be a special parent and I didn’t feel like I was up to the job. I think there’s a lot of rhetoric around … I think we imagine as a society that special needs parents are superhuman because they’re doing something that we couldn’t see ourselves doing or don’t want to see ourselves doing, so I sort of felt like, well, I’m not that person so I can’t do this. All I was getting were positive stories and I was really angry and upset and didn’t want to hear positive stories. I wanted someone to say to me, “yeah, this is really shit and that’s okay.” So when I created the podcast my idea was that I was talking to another mother in a NICU or an ICU with her child who is distraught and providing a community where people were honest about how they felt when their child was diagnosed. It’s not all doom and gloom but there is some doom and gloom in there. Because there are some people who just cope with this stuff amazingly and I take my hat off to them but there are lots of us who don’t, and I think that’s okay. I think it’s the same thing as … like with parenting in general, we’re sort of encouraged not to talk about the bad stuff or the hard stuff and that kind of doubles down for the first year with special needs parents. I wanted to create a place where people could be really honest about how they felt even if that was something they regretted now, which it often is. But then also to talk about the good stuff and how they’ve come through that dark space and come out to the other side.

EW: It sounds like special needs parents … they don’t have the same space or room to actually express that it’s difficult because there’s this idea that you have to be a great parent, you have to do all this because your child is struggling so much that you just have to sort your shit out and step up. That’s often what I felt that the message was … just that you have to step up. I mean, I clung to one of my friends who had a daughter who was in hospital as well, because that was the only time we ever talked honestly. It’s a really unfortunate thing to say, but people say the dumbest shit relentlessly about that period of my life—and I’m so thankful that it was short, that we were the lucky ones to have come out of it—but I just felt like people … I distinctly remember having a panic attack before another surgery and somebody I wasn’t friends with saying, “oh yeah, I know what it’s like, my son had an x-ray.” I was just like, “it’s not even fucking remotely the same, your child can’t die in an x-ray,” like, shut the fuck up. For me it manifested as rage and I just remember sitting with my friend and we were both struggling so much, and the stuff we talked about was so dark because it’s so heavy … and now, even the second time, being removed from it, sometimes I’ll be thinking about it and my problems now are so very different. Stuff like: oh, I’m quite tired and all that … whereas before it was like, I’m worried that my child’s going to stop breathing during the night and I’m going to wake and find his body. That was my fear then. My fear now is like, I’m really tired, am I doing a good enough job with lunchboxes? And I just wonder if there’s any way to bridge that gap? I feel like there isn’t.

HW: There’s probably something in that. I think part of what drives people to perhaps say inappropriate things or say really well-meaning things that aren’t helpful is fear and not being sure whether you’d be able to cope if you were in that situation. It’s interesting what you’ve just said, Emily, because you’ve been in that situation and you’re no longer in that situation and your brain has actually made that shift.

TP: I think it’s probably totally important to your survival to be able to make that shift. Because I try to remind myself—I’m still friends with a lot of parents and I’ve stayed connected with them. My daughter would be two and a half if she was still here. So a lot of their kids are little toddlers and they’ll talk about things that are hard and I have to remind myself that those are hard things, you know, it’s all on a scale—it’s all relative. Having your child have repeated ear infections or whatever, that’s still scary for that parent, it’s just that the scale has shifted. I remind myself of that quite a lot. It’s not my place to say, “oh, shut up” or “those aren’t problems” because it is a problem for them and your understanding of that shifts.

EW: But I’ve found it very hard to do that. When I was in it, I actually just felt like saying to people, “shut the fuck up.” I had this constant thing of, like … when people would talk about stuff like, “I had to give my child Pamol last night, I know you’re not meant to …” and all this shit and my child would be on morphine and stuff like that and I felt so, like, “can you just think through what you’re saying in the presence of somebody …” This was what my best friend and I always said—the microagressions of being a … because constantly people would put their foot in it. It was well-intentioned and things like that but it felt very … there were all these things like I wish there hadn’t been something like what you are doing because people would say, “how can I help?” or do all these things and I would just be like, “I don’t know, I’m in a fucking hospital trying to keep my baby alive, sort it out yourself.” Now I feel like, you know, listening to your podcast and reading your writing, now I can make sure I don’t do that to another parent going through it. Now there’s things like you can get advice on things like not asking about the condition, Google it and find out information for yourself because I don’t have time to explain it all to you and I’m confused by it and don’t try and tell me what we should do because you Googled it and now …

HW: You know the other one you get all the time? My take on disability and chronic illness and special needs parenting is slightly different in that my partner has a rare form of muscular dystrophy which is quite a benign form so he is able to lead a fairly active life because it only affects certain groups of muscles. He’s had that for a long time but it’s now combined with chronic pain which he developed when he was caring for our daughter when she was a newborn. We didn’t really think it through very well. I was an MP at the time and I went back to work very early. He was her full-time carer. It literally didn’t occur to us that lifting car seats and a heavy baby might not be good for his weakened shoulder muscles, which now seems so dumb—sorry, I just used ableist language!—it seems silly that we didn’t think about that. He developed very serious chronic pain as a result and had to stop caring for Esther and I had to stop working full-time. It was a big factor in my leaving Parliament although in retrospect there were lots of other factors that meant I needed to do that as well, but at the time I thought that was the main thing. Then we had a really hard year or two years recovering from that experience and he still experiences chronic pain to this day. That hasn’t gone away. What I was going to say was when people hear “muscular dystrophy” we often get people saying, “yeah, I had a friend who had MS and they found that …” you know, such-and-such really helped. That thing about having a small amount of information about a condition and thinking it’s the same as that other condition, and the suggestions! Has he tried this, has he tried that …

EW: Yeah. People want to diagnose children all the time. When I’ve written about sleep and things like that with my youngest, I think almost weekly I get diagnoses of autism or Asperger’s or reflux … reflux is very, very common. Everybody thinks it’s reflux even though he’s almost two years old. This idea that if you label it as something, it will mean something.

HW: Or that you can then fix it.

TP: That there’s a solution now.

EW: Yeah. That’s the thing. With Eddie’s condition, when we got the diagnosis we thought, “oh, perfect, it’s sorted now” but it was the most severe type of that diagnosis so it meant that we went and looked it up and we thought, “oh, this is all right!” and then they went, “no, yours is …” you know, way off the scale sort of thing.

HW: I’ve heard parents talk about that on your podcast too, Tessa. The idea of whether a diagnosis is helpful or not when it means you can then go and Google it straight away and find out.

TP: In some ways it really is. Being able to name it, having a practical way … it’s very helpful for things like funding. It’s very helpful if you can say, “my daughter has CHARGE syndrome” or “my daughter has Down’s syndrome” or whatever it is. That’s very helpful. It’s also helpful because it connects you to a community. The CHARGE community is very active on Facebook and it’s very supportive. That goes for almost any diagnosed syndrome; you can find a really supportive online community. But at the same time, like I remember when CHARGE syndrome was mentioned casually, it wasn’t a diagnosis yet, and that was before I’d found out Eva was deaf. I Googled it. When I was pregnant we thought something was wrong with Eva’s eyes and something wrong with her heart potentially. So I was Googling, and my biggest fear was that these aren’t isolated things, these are all connected and this is a syndrome. So I was Googling conditions which affect the heart and the eyes. And I found CHARGE syndrome. I remember looking at the page and being like, “oh, fuck that.” I also thought it can’t be that because it makes them blind and deaf and she wasn’t blind and deaf. I didn’t know at that stage. So it can be a terrifying thing to have a diagnosis. But it can be really helpful. It’s really terrifying for parents whose children have severe conditions that don’t have a diagnosis; that’s really tricky because then there are no parameters. Even though for most of those, for CHARGE syndrome or Down’s syndrome or any of the others, there’s a spectrum of what that’s going to look like. You don’t know where on that spectrum you are, usually. At least you can see the spectrum. Whereas if you don’t have a diagnosis, there is no …

EW: Then you do have the people who are constantly wanting to diagnose you because there “has” to be a reason for … I mean, with my youngest, trying to work out why he doesn’t go into REM sleep, why he doesn’t sleep. We feel like it’s probably neurological but we can’t work out what it is and it’s not impacting anything else. Once a child’s development isn’t being affected, it’s like … the only thing is you aren’t sleeping. I find that people want to be helpful and want to be the person who solves it, but it’s always framing it around your child being a problem that needs to be fixed. That’s what I think as well with people with children with visible disabilities, it’s so … having a visible disability is hard as well, it would be terrible, but I remember just feeling like, as a new mum, having a level of anxiety about being a parent anyway but having such a visible … with Eddie, everybody would look at us, make comments, feel really comfortable coming up and talking to us about it and stuff, when we just wanted to go out because it was so rare for us to go out. If we went out to get a coffee and I was like, “did somebody just cough near us?” but on top of that I had people coming up and being like, “he’s not well enough to be out, I can hear him …” We used to be really nervous getting into lifts and stuff because it’s an enclosed space and you could hear his breathing. Even once I remember my husband had a terrible time because people would assume he wasn’t a good parent. Once he went to the pools and a mother complained: “that father’s got their sick child in the pool that shouldn’t be in there.” I’m not sure that would have happened if I had been there.

HW: That’s an interesting gendered element to it. I think there is a general idea of … a ‘slack dad’ kind of attitude.

EW: Yes, heaps of ‘slack dad’ stuff. And also how we dress him and stuff. On a hot day he would be dressed for a hot day because we knew he didn’t have a cold or pneumonia or anything like that but people would be like … I had one woman who was like, “you should be ashamed to have your child out who clearly has pneumonia.” I think being on display as a parent is really difficult because you’ve either got all this advice or people staring and whispering and making comments. Or you have this other terrible group of people expecting your child should be some inspirational story. That’s even now, with Eddie. I find it really hard, this line: “he is very inspirational to me as an individual human being”, like … I think he is incredible and inspires me to be better and I think he inspires other children and his friends and people who’s lives we come into contact with, and when I share stories about him I think it is inspiring but that’s different to this idea that he’s just inspiring because of his illness. Yeah, exactly. I struggle with that. I’ve turned down media things around some of his charities because they’ve been like, “can we have video of what he was like after? Can we have photos after surgery?” and all that and I’ve refused to show that. A few times I’ve had … when I was doing my charity media for Ballet is for Everyone, they had “can we get some photos of him after surgery?” and I was like, “no, that was the most traumatic time in our lives” and also he looks like a dead child. What do you think it’s going to look like? It’s an awful thing.

HW: How do you grapple with that, Tessa? From my perspective, it’s true to say what you’re doing is very inspiring to people but I know you don’t do it for that kind of … and you feel very strongly that Eva’s life was incredibly valuable in and of its own right without her being an inspiration for others.

TP: I think that’s really challenging. I think there’s that ‘inspiration porn’ thing that happens in the special needs mummy blogger community and adults with disabilities recoil from that a bit. I can totally understand why. I agree with what you were saying; Eva inspired me because she overcame so many things, like—“she can lift her head, that’s amazing!” or “she’s smiling!” so I was super proud of her and inspired by her because of that, but she didn’t owe the world any of that. She wasn’t here to teach anyone about compassion. That wasn’t her job. I find that quite hard to take—as if she was a life lesson for people. Even if you do learn a life lesson from her that wasn’t … you know, she was a person and she had her own life. But something you were saying before about the visible-ness of it. I felt that acutely. Eva visibly looked quite different, she had … one of her eyes looked different, she had an NG tube on her face, there was clearly something different about her. I could feel people watching her when she was out. They would approach me and ask what was wrong with her. I thought about just giving them a card, like just printing “CHARGE syndrome” …

EW: Yeah, I actually considered that too! Like “this is why he sounds like this.” We used to carry a letter from a doctor before going on … every time we had to fly, which was rare because planes are germ pits.

TP: Yeah, just to explain it. But the other thing I found, almost a benefit, was that because Eva was so different from so many other babies, people couldn’t give me advice. I found that quite liberating. It was like, I don’t actually have to worry about … like, I couldn’t breastfeed her so I expressed milk for three months and then she was on formula. All the rules, all the standard rules and judgments you make on parents didn’t apply.

HW: So you had this freedom.

TP: Yeah, I’d be like, “go on, tell me how to look after Eva!” because you had no idea and no one even tried. It was helpful with my own parents and in-laws. Nobody ever tried to give me advice on how to parent her because nobody knows. I’m doing the best I can. In some ways I found that quite liberating because I wasn’t judged in the same way other mums feel judged. An interesting positive side.

EW: Yeah. But I mean, it’s really … what you were talking about before about … the inspiration side of it. I really feel like as a parent, what you said has resonated with me. I don’t think I’ve ever thought of it that way as well. This idea that parents have to be inspirational and really, they don’t have the same ability that like … I only started writing with my second child. Now I feel like I have a lot of space. People are like, “oh yeah, Emily’s a fuck up, she’s not …” I feel like I could never have done that with Eddie. All I ever got from people was, “you’re amazing keeping it together” and all that. I remember once going out and getting shitfaced and smoking, and a friend of a friend of a friend going, “I’m really surprised that you smoke,” and I said, “well, I don’t, I’m just out on the piss because I’m like pent up from like … stress monster.” I just felt like other parents were allowed to do things I wasn’t allowed to. Other parents were allowed a [unclear] and I wasn’t. Other parents were allowed to say it’s too much and I wasn’t allowed to. I think parents aren’t allowed to fall apart. I don’t think any of us are allowed to do that because of how that’s framed—like you’re a fucking monster for doing that. I mean, look at the pressure on mothers with mental illness and stuff. They literally have to break and attempt suicide to get a break, a lot of the time. I just think especially with parents of really sick children and I wonder, Holly, about sick partners as well. It feels like this immense pressure that you hold it together. You must always hold it together. My friend and I have talked a lot now with our kids. Her and her wife have just had a second child as well, and how different that is to having a new baby … I found that really challenging. Eddie was so tiny, like a little bird. And Ham is a giant Christmas ham, you know. You parent so differently. Not having to be constantly on guard. That’s when I really realised I basically had a kind of … we call it “sick kid PTSD” because you suddenly realise you’ve held your breath for years and years.

HW: Yeah, and I would say that feeling of holding your breath feels very much the same as that period when David was really unwell. There was a time when he wasn’t sure he would be able to work again. He wasn’t sure he would be able to parent the way he wanted to. For a long time he was fairly stationary at home. Turns out that’s the worst thing you can do with chronic pain but … I think when you first get chronic pain you respond to it how you would with acute pain which is to rest and hope it goes away. Then when it doesn’t there’s a whole lot of other stuff you need to do. But anyway, during that time when he was really concerned that any activity would make things worse so he really didn’t do a lot, including not lifting Esther, his parenting of her was quite localised. He could read her stories on the couch and stuff like that. That was a really hard time when I thought, no, he thought—“shit, what if I can never work again? What if I can’t be the parent I want to be?” and I thought, “shit, what if I’m going to be the main breadwinner and main domestic support person? What if this is it, this is our new reality?” Fortunately while he still has pain a lot of the time, he’s learnt some good techniques for managing that and has expanded out his range of activities. He’s working again and is much more mobile. He’s a much more active parent. I had that feeling of, like, exhaling. It’s partly about Esther getting older too, now. She’s three, more independent, more self-regulating (haha, sort of) and she sleeps better. She was never very good at sleeping either. So for a whole lot of factors, it is that sort of … you can breathe out again and actually look around the horizon and see things quite differently.

EW: This is where what you are doing with the podcast is so needed and so powerful. Because I remember, it was with my youngest, we went into the emergency room with Eddie and I was terrified because Eddie had got a cold. They were like, “he’s OK, he’s breathing fine.” He’d been doing really well for a long time but we really just wanted to go into the ward and wanted to make sure. They suddenly went, “we need the baby.” I had been holding Ronnie, his head facing my shoulder. They had seen just from the breathing on his back—this is how amazing doctors are, I have the biggest hard-on for doctors—they took him straight away and he had bronchiolitis. He went straight onto a machine basically to help him to breathe. We hadn’t picked it up because Ham was our robust baby who was fine and had nothing wrong with him. He was like ten pounds, Eddie was six. We just had been so focused on Eddie that we’d just been like, the baby has a cold. So he was in hospital six days at the exact same age and they looked exactly the same as each other. I lost it at that time. It was just like going back into isolation with the baby that looked like Eddie, seeing the same doctors, and one of them called Eddie called by the name of his condition. He said, “is he the X kid?” and I was so upset and offended that he’d call my child that. It was this horrendous time in my life of realising I hadn’t dealt with anything that I had gone through with Eddie. When we were realised and life went back to normal, I again had that moment of being able to draw breath. I had written a few bits and pieces while in hospital and I wrote it and pulled it together. I made the point of saying that there are so many parents who don’t get that, where they can finally draw breath. I feel like there’s something about caring for children that is … your empathy radar just changes. It changes the very fibre of your being around having empathy for others. There are so many parents who just never get to take a breath. That’s why what you’re doing is so vital because there’s no place. It feels like you’re living in between two worlds.

HW: I’m guessing for the parents you had in mind, they are probably right in the middle of feeling like they’ll never get to breathe again.

TP: You’re right. Some of the parents I talk to, they’ve been in that crisis mode for years. For some it’s months, for some it’s years, and for some it’s decades. So yeah, it’s really hard. When you come out of that, if you’re lucky enough to have that breath of relief moment, it’s really easy to forget how you felt in that crisis time. That’s why I wanted to create the podcast. Even within the special needs community there’s kind of a “school of hard knocks” type feeling. Like, “we went through it, we didn’t complain” so you can’t complain, just get on with it. That’s not helpful at all, that just makes you feel really isolated and alone. The idea being you don’t have to feel in that crisis mode but you can remember it and talk about it so other people who are in it can feel like, okay … and I’ve had a lot of feedback from people emailing me and saying things they would probably never say out loud. Saying things like “thank you for saying that because I’m not going to say it out loud” but connecting with it on some level and saying, “it makes me feel less alone,” and like someone else out there is going through it. Then there’s the added horribleness of all of it. The isolation of it. The actual physical isolation. Often with kids with special needs, you can’t go out that much and you are worried about germs constantly. I remember talking with a mother online. Her baby had no issues and she was in a café and she saw a baby in a pushchair and the mother had put a sign up that said, “do not touch my baby unless you’ve sanitised your hands.” This woman was kind of mocking her. I said, “you have no idea what’s going on with that baby.” That baby could have respiratory problems, it could have a low immune system … for some people it may seem like over-worrying but put yourself in that mum’s shoes. She had to think about that enough to make a sign.

EW: It is this thing where people need to take some time to consider it. This goes back to the microagressions. I used to get things where Eddie would try and take off his shoes and we’d always tell him to keep his shoes on because it’s this thing of needing to keep his whole body warm and all that stuff. On a handful of occasions I had people joking about me being too uptight, like, “it’s part of the Kiwi way to run around barefoot.” It’s such a funny thing to remember, all the dumb shit. There’s a wider issue of just … just let parents parent however the fuck they need to. Just let them do it. For me, that was on guidance. You talk to heaps of other people about how to avoid colds and flus when going out. It does get to a point where parts of it become a safety net for you as a parent, even when your child has come through and is doing better, you’re holding on to those things. I think what you say about remembering is really important in the sense of, for me, I’ve learnt so much about accessibility through having a child. Mainly his friends. Like, his best friend is immune compromised. I had never thought about that before I had a child, despite being a feminist. Feminism has massive ableism issues and stuff like that but for me, I had been “inclusive” and all that but I had not thought about what that looks like. Particularly for people who are immune compromised. That’s a real part of my intersectional feminism now. Things like holding an event at a place that’s wheelchair accessible or something and people will ask, “do we know anybody in a wheelchair who’s coming?” and it’s like, that’s not the point. I’ve had similar things in feminist spaces … we’ve said we would love to do an event that included children but can you make sure all the kids are vaccinated and they’re all completely healthy? And they’re like, “oh, I don’t about that, I don’t know about vaccinations… [unclear]” and you’re just like, OK well, that’s not accessible. Where all the lines go is hard for people to get their heads around. But I’ve talked to many parents who agree that you can feel physically unsafe around people who do not vaccinate. Eventually they will make comments that make you feel like they don’t value the life of your child. One of my really biggest points with anxiety … my friend Kiki Van Newtown who writes for The Spinoff – if anybody listening gets the chance to read her amazing piece, she talks about giving up the late-night arguments online. I went through a period as well where you feel that advocating was trying to get everybody to care about children who are struggling with health and chronic health issues and eventually you just stop because it’s so bad for you. You can’t do that fight. I used to get people constantly emailing me being like, “here’s a thread, can you reply back with some of that stuff?” and I did it for such a long time. It burned me out and wore me down. Constantly feeling like you have to advocate for everybody. Now I feel even a bigger sense of needing to do that because my child got through it when so many people don’t.

TP: The advocacy thing is the other thing that means special needs parents suddenly find themselves in a new position. I guess parents do anyway; you are your child’s advocate. But with special needs parenting or medical needs parenting there are all these new arenas where you have to do it. You have to stand up for your child with doctors and with teachers. That’s a really hard lesson to learn. I didn’t have an even look at doctors and who they are. They’re doing their best but they are humans, they’re not perfect. So I wouldn’t question them to begin with. I wouldn’t be the advocate that I needed to be. There is a switch that turns on at some point where you’ve given all the fucks that you have to give. Eva got sick a couple of times—she got bronchiolitis, she was in the PICU at Starship Hospital, she was incubated for ten days to the point where the doctor was saying, “with babies like Eva, she may just keep getting sick like this and you may need to keep making decisions around whether or not you want to intubate her.” That level of sick. We were in hospital for a month afterwards just trying to get her oxygen levels right. When we came out of hospital we went and visited my old school with her and I’d already decided I’m not going to hand her around. She’s not going to be handed around. Then somebody said to me, “can I have a hold?” and I had to say, “look, no. There are germs, and she’s just gotten better …” and this person looked at me like what? And what I felt like saying to them was, “do you feel like spending the next two weeks with her in hospital? Because I sure as shit don’t.” It has big consequences. Scary consequences.

EW: It does, yeah.

TP: But people don’t … “as long as it’s a healthy baby” … they don’t have to think about those things.

EW: And actually that’s the thing. Not having to think about it. I really think the concept of health privilege, which people don’t talk about … if you don’t have to think about it, you have health privilege. It can be around your child or your partner or yourself. I think this is rarely ever talked about. When I see comments with blanket phrases like, “oh, I don’t trust the medical profession” or “Big Pharma” and all this other shit and I’m like, “yeah, you’re allowed to take that position. You’re allowed to sit on the fence with vaccination or say you’re only going to use natural therapies for your child and stuff, or you’re never going to give them Pamol because that’s like crack or some shit.” You know, you’re allowed to do all those things and have them do your parenting style … I read some bizarre shit about some parents these days being too into antiseptic and all this bullshit, about how it’s good for their immune system to lick the floor. It’s like, you are allowed to do all those things because of health privilege.

TP: Yes, there are no consequences.

EW: There are no consequences for you. So when there’s an article or a mother saying, “your kid’s sniffles is my kid’s ICU visit,” you’re allowed to say, “well, they shouldn’t be going out. I should be allowed to go to the café and buy a hot chocolate.” That is health privilege. All of these things … it’s all health privilege. Being able to just sit and wait to decide things. So many times with Eddie’s treatments—he had like eight endoscopies or something like that, far beyond what he should have been knocked out for but anaesthetic is a risk so they don’t want to do that. Things were being done on Eddie that I don’t think would be done on an adult because he was a child. I struggle now with what I allowed to happen because I’d allowed it in that context, and then I’d had to trust the doctors. I felt like a lot of the time I had to trust the doctors. Because they had my child’s life in their hands. It’s what you said—this constant struggle between you knowing what’s best for your child as well …

HW: It takes a while to realise that you probably know … if you’re living with an ongoing condition, you are the expert. You and your family. Like with Dave. You go to appointments and it’s a similar thing. You start by hoping the doctors would have this solution or that they would say, “you’re having the pain because of this.” There was never anything like that. In the end you realise we now know as much from putting all the different information together from all the different specialists. We know as much as the person we’re going to speak with, and yes, they are an expert and they have something to add here that we haven’t already heard but we have to put it together with all that other information and make our best judgment about what to do.

EW: Also you have to have a level of education to do that. My husband and I really struggled with the information we were given. We found it hard to understand the language they were using. We felt like … we weren’t particularly young, twenty-six or something, but as first-time parents and people who’d never been part of the system, I felt very much like we just listened to them and do what they say. We had lovely doctors and also you feel quite attached to a lot of them because they literally save your child’s life again and again. But you know, it’s really hard. I don’t think we ever got to the point where we felt like we could stand up to them. Or like we were in a position to understand enough to be able to do that. Our last endoscopy was when Eddie basically passed out from it and we said, “never again.” I was hysterical from it. The thing that I always think with health privilege and stuff is now I’m in a position where I could have birthday parties at Junglerama or Chipmunk’s or something, it would be easy for me, but it would exclude a lot of his friends. Or I could have events and say it doesn’t matter if people aren’t vaccinated or I could … there’s things I could do now, but I won’t to them because I think when you have health privilege, particularly when you’re a parent, you have an obligation to do this for parents who don’t have it. All those times people said to me, “this person said this about vaccination, can you believe it?” and they would send it to me. I would feel like I was punched in the face and would often cry. Then I spend the next hour and a half trying to convince the piece of shit and do it in a really delicate, nice way so that they might care about my child’s life. Finally I just reached a point where I was like, “you fucking do it. You’re getting more sleep than I am, you’ve got more energy than I have, it’s not your child so you’re not being punched every time you read that. So you sort it out.” I think that’s our place where we have to say, if you have health privilege and you are a parent in that situation, you should actually speak up—

HW: I think we need to wrap up because Emily’s kids have just arrived.

EW: My husband just popped his head round the door, like …

HW: “Oh, you’re still talking!” I just wanted to say, we’ve had quite a condensed version of your story, Tessa. But the most recent episode of your podcast The One in a Million Baby features your story in full and it’s a really beautiful piece of audio and a brave and compelling story that you share. I definitely recommend people check it out, as well as Tessa’s blog and her work on The Spinoff. All I think it remains for us to do is thank our sponsors again, Little Big Crate.

EW: I just wanted to say a huge thank you, Tessa, for what you are doing. When I see what you’re doing with the podcast and with your writing and everything, I feel like I wish I had that. Community is the only thing that I felt ever helped anything. Knowing that I had my people. I think when you’re isolated it feels impossible to find your people. You can’t just find people like that in the antenatal group or something like that. I feel there’s so many mums who just … they drop off when you become … it feels like you’re on another planet. It feels like nobody is ever going to understand what life is like for you and what you’re doing is giving people a window into what – hello, Eddie! – a window into what that life is like, so I just want to say thank you for that because I think it’s an amazing gift, to give that to other parents. To be a parent and give back like that. So thank you. I’ve got a cheeky boy here with me … you’ve got a pea that you’re eating from the garden!

HW: OK, so, thanks to Tessa and thanks to Little Big Crate. Thanks to The Spinoff for hosting us.

EW: Littlebigcrate.com. Check it out, really nice clothes. They support us so we are very grateful.

HW: We are very grateful to them. We’ll see you all next time!

HW: Thanks for listening to another episode of Dear Mamas, The Spinoff Parents Podcast. This podcast was produced and presented by me, Holly Walker, and Emily Writes. Huge thanks to our guest, Tessa Prebble, for sharing her experience with us. You can find Tessa’s amazing blog and podcast at theoneinamillionbaby.com. You can find more episodes of this podcast on thespinoff.co.nz under the ‘podcasts’ tab or by subscribing to Dear Mamas on iTunes, Stitcher or wherever you find your podcasts. Please leave us a review while you’re there. It helps people find us. We’ll be back next month with another episode. In the meantime, hang in there, you’re doing great.