Ep. 115: Melanie Dimmitt’s Story | a Diagnosis Delivered in Bite Sizes + How It Started Vs. How It’s Going

 

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Summary

Today, we have a very special guest, Melanie Dimmitt. Melanie’s son Arlo has cerebral palsy, which isn’t a rare disease, but so many listeners reached out to recommend Melanie’s book Special to me. After reading her journey of coming to terms with her son’s diagnosis and navigating her new life of medically-complex parenting, I knew we had to talk to her.

Before Melanie received her son’s diagnosis, she was a little terrified of having a child with a disability. It wasn’t just that she was afraid of how hard it would be, but that she would miss out of so many parts of parenting and family life. But as she soon found out, while parenting a child with disabilities can bring significant challenges, it also brings extreme joy.

In today’s episode, Melanie shares the story of how her son Arlo was diagnosed with cerebral palsy, the way she viewed disability before Arlo, and how her view of parenting and raising a child with a disability has shifted since his diagnosis (it’s drastic!). She also explains how she wrote her book Special. to help rebrand disability parenting and offer support and encouragement for new parents who have found themselves in the same shoes as Melanie.

This conversation was so encouraging and uplifting. You’re not going to want to miss it!

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Episode Transcript

Melanie Dimmitt  00:00

And the doctors just kept saying, "Look, this obviously wasn't a great birth, but you just have to look at the baby in front of you, he's looking pretty good." Then, they did an MRI that showed he had bilateral brain damage to the motor section of his brain. And they said to us, "We have to wait and see what this means."

 

Madeline Cheney  00:21

Hello, you're listening to The Rare Life. I'm your host, Madeline Cheney, and I am thrilled to give you a conversation that with beloved Australian author Melanie Dimmitt. She wrote the book called Special, all about being parents to disabled children. Many of you have gobbled it up - and if you haven't yet, put it on your list of self-care options. It is really so good. Real to the max. And you know how I feel about honesty in this space.

 

It was such an honor to chat with Melanie, and I just know that you'll love our conversation. Melanie lives in Sydney with her partner, her four-year-old daughter Odie, and six-year-old son Arlo, who has cerebral palsy. And, sidenote, it's kind of fun because our kids are the same ages; just reverse birth order of whether our disabled or non-disabled kiddo arrived first. And a little fun fact, Melanie is a journalist by profession, which was kind of the perfect catalyst for writing Special after Arlo was born.

 

She's also the editor for a magazine for tubies and their parents, called The Blend. And I wrote an article in the most recent edition, so go check it out! The Blend is free of charge, and there is a link to access that in the show notes. It is so beautifully done and is something that I wish I had access to during the early tubie days with my son.

 

Along with articles written by parents and tubies, The Blend magazine highlights the tried-and-true brands that can make our lives easier when it comes to tube-feeding. And one of my favorite brands in that sphere is Moog Medical, the creator of the infinity feeding pump. Having a high quality and user-friendly pump is so important, and really impacts families on the daily.

 

 One of my favorite things about Moog is how they genuinely care about each tubie family. It's been my privilege to meet with some of the top executives there, and I always feel how much they genuinely care about this community and making our lives just a little easier with high quality feeding equipment. I wanted you to hear from them firsthand, so I had them write a little message for our listeners.

 

They said, and I quote, "When it comes to developing our manufacturing products, or answering questions from a concerned parent or caregiver, our goal is to help those who use our products to live life more fully. We understand that our products are only a part of the complex medical care you are providing. If we can make life just a little easier for you and those you care for. We feel like we've accomplished our vision." I just love that so much.

 

A huge thank you to Moog for the compassion for this community of parents, and for showing that love in the form of high-quality products and in the form of making this important episode possible through their generous sponsorship. If you'd like to learn more about Moog Medical and their products, check out the link in the show notes or head to Moog Medical. That's Moog spelled M-O-O-G.

 

Okay. Melanie is a lover of a root concealer spray for gray hairs and reading. Alright, let's dive in. Hi, Melanie, welcome to the show.

 

Melanie Dimmitt  03:36

Thank you so much for having me on, Madeline, I'm so excited.

 

Madeline Cheney  03:40

I'm so excited too, I think this is such a long time coming. A little background about when I first heard about you - I had just started the podcast, and I remember I was starting a Facebook group for parents of children with rare conditions (which will have a link in the show notes if anyone wants to join that). It's grown quite a bit since we started it. But in there, it's like a convo-starter. I was like, "Hey, what books do you guys love about, you know, this realm of parenting?" And the one that was named over and over again, was the book Special, they said I have to go read this book. And of course, I didn't because I was just doing my own thing until recently. And I was like, "Oh my gosh, this is such a jam. I can see why people were recommending it so much."

 

So, this is such an honor to chat with you, and it also was so fun. Like, we've talked before off the hook, but reading it, I was just like, man, she's my soul sister. Everything in here. I feel like our main focus and the themes that we have within the podcast and within your book are so compatible with each other. So anyway, I'm just so excited to chat with you today.

 

Melanie Dimmitt  04:41

Thank you! Like I was saying to you, you could have written this book. Like, I don't need think you even need to read it. It's preaching to the choir. Thank you again for having me on, I know this is a podcast for rare families, and my son Arlo it has a condition that is common as muck with cerebral palsy. So again, thanks for letting me sneak on here. Regardless.

 

Madeline Cheney  05:00

Of course. I'm just so excited. I think you articulate yourself so well, and I think what makes the book so amazing is that you're like, "Ah, yes, that is the feeling I had. And I did not know how to express it." And so, anyway, I'm excited for our conversation today. So, I would love to dive into the nitty-gritty of Arlo and your experience of finding out that he, you know, with air quotes, finding out that he had medical complexities, or you know, that he's disabled.

 

Melanie Dimmitt  05:30

We had a relatively easy path into that, I now realize because a lot of people, yourself included, found out or find out that their child is different while they're pregnant. And I can't even imagine how terrifying it would have been because there are even more unknowns, if you are pregnant, and you find this out. I had a beautiful six-month-old baby in my arms when I found out that he had cerebral palsy, and I am so grateful. I've spoken to so many parents who knew before they had their baby in their arms, and it would have been so much harder, I think.

 

We had a really shitty birth with Arlo, that's how he came to have a brain injury. We had a pretty normal pregnancy, though there were a few things. He had a hole in his heart, which we had to monitor quite carefully. So, we thought that would be our thing. There was a cardiologist on standby for when he was born in case they needed to be a little surgery. When he was born, we were pretty freaked out about that, to be honest. You know, in hindsight, a wonderful thing that's actually not even an issue.

 

Madeline Cheney  06:37

Isn't that funny? It was the perspective where you're like, "I was worried about this thing that rocked my world and blew my mind." And then it's like, once you - I don't know if you listened or people listening right now have - the episode about the pain scale, where it's like, it's all relative, and it all shifts according to what you've gone through. And so, to look back and be like, "Oh, we were freaked out about that?" Like, oh, honey. Just you wait.

 

Melanie Dimmitt  06:58

I know, right. But goodness me, I'm so, so happy that pregnant me and new mum me had absolutely no idea.

 

Madeline Cheney  07:10

Baby steps, yeah. (laughs)

 

Melanie Dimmitt  07:12

You know, I am now living by far my worst-case scenario, and it is not at all what I would have thought it to be. So, it's been a steep learning curve. But yeah, like I said, he had a brain injury at birth. He lost oxygen while he was in my tummy. Luckily, we happen to be in hospital - it was a few days past his due date, and I noticed that his movements were a bit weird. And they always say you should go to the hospital if you think your baby feels a bit strange, so we went in, they checked him out, said he was fine.

 

They sent us home, and I said no, there's definitely something wrong, made them me back in, they hooked us up again. They said, "Looks fine, but you're worried since you're past your due date, so we'll keep you in overnight. And if there's a spare bed in the birthing suite in the morning, we'll induce you."

 

Luckily, there was a spare bed, and I was about to be induced. I was all hooked up to a fetal heart monitor, and I were watching this heart monitor while we were waiting for the nurse to go and do something to start the induction. And we noticed Arlo's heart rate just plummet out of nowhere. We were like, "Oh, that's weird." And we pressed the button for the nurse to come in. No nurse came in, so we ran out into the hall and said, "Someone come in here!" Nurse came in, got a stethoscope out, couldn't hear any heartbeat at this point, and the emergency button was pressed. Felt like a million doctors came into the room at this point. And very quickly, it was decided that I'd be having an emergency dissection.

 

As they were rushing me down the hall, they put me under, and they couldn't have done it fast enough. I was so grateful to be checking out of that situation, and I just watched Ro's face disappear down the hall. And I will never lose that image. When I woke up, I was wheeled into what I later found out was the NICU, and a beautiful baby was placed on my shoulder with blue eyes, and he stared straight into them. And it was magic. And all that mattered to me then was that he was alive; I was thinking like, we got through this. This is all going to be fine.

 

My poor partner Ro, on the other hand, had to go through an absolute living hell of not knowing whether me or our baby would survive. He was told he could come in for the birth, he got all scrubbed up and got a peek in the window at the horror scene that was happening with me and my stomach at the time. And he was then told, "Oh, no, sorry, you can't come in," and he was left in a room by himself. For ages. So, Ro has some serious trauma from the birth. I didn't even have to be there.

 

Madeline Cheney  09:38

Isn't that ironic.

 

Melanie Dimmitt  09:39

I know, I know. And look, Arlo spent his first week in the NICU. They did this thing where they called him down if they were worried about brain damage, and apparently that can help with that. So, he was in this little incubator, and we couldn't touch him for the first couple of days. That was hard. But I was in a different ward to him recovering, getting lots of sleep. It was fairly cruisy stuff for me. And then, after a couple of days, we could hold him, and the nurses all helped us to look after him in the NICU. And he looked great. And the doctors just kept saying, "Look, this obviously wasn't a great birth, but you just have to look at the baby in front of you, he's looking pretty good."

 

Then, they did an MRI that showed he had bilateral brain damage to the motor section of his brain. And they said to us, "We have to wait and see what this means." They said, "Worst case scenario, it could be cerebral palsy." I let that go straight over my head. I didn't know what that was, I didn't want to know what that was. I just kept saying, everything will be fine. Because up until that point in my life, everything had been. And our family just kept saying everything would be fine, everything will be fine, because there was no other acceptable outcome. For me, I felt so strongly about that.

 

And then we left the NICU, and he was monitored closely. We had to send in a video of him on a white sheet - I don't know if you guys do this in the US - at three months, we had to send a video into the hospital of Arlo just lying on a white sheet for five minutes. And in that time, all he did was arch, move slightly to one side, and stare at his cot leg. And I was like, this does not look good. And from that, a whole lot of therapists and doctors studied that video, and from that, they could tell it was something severe.

 

And then, when he was six months old, this gorgeous, smiley, engaged child had not hit a single motor milestone. He could hold his head up a bit, but that was it. This is the point where he was diagnosed with cerebral palsy, what we pretty soon come to discover is quite profound - level five on that GMFC scale. Again, I don't know if you guys have the same, but as severe as it can get really. Physically.

 

But so far, he doesn't seem to be intellectually impacted. So, we have a bright, beautiful kid who is nonspeaking, and a wheelchair user. And he needs quite a lot of significant support to do what he wants to do and get around. And, since last year, he's also been PEG fed with a D tube. So, he's got a lot going on, but we have an awesome kid. And he has completely changed how I look at the world. And, well, he's a delight. We love him. So, we're very lucky.

 

Madeline Cheney  12:19

Wow. I would love to kind of zoom in on the diagnosis when they told you he had cerebral palsy. At that time, did they tell you right away? Like a package deal? Like, “He has CP and it’s level five.” Or did you find out the level five later?

 

Melanie Dimmitt  12:36

Thank goodness, that is not how it was delivered. I've heard absolute horror stories of people getting diagnosis, as have you, I know. We were told by this wonderful pediatrician, "I'm gonna give you a diagnosis of cerebral palsy, just so you can get the funding that you need and the supports that he needs. Please know that cerebral palsy is a very broad thing. Some people just have it in one finger." And this doctor would have known for sure that he was not looking at a kid that had CP in one finger. But he was so kind about the way he delivered it to us, he left so much flexibility and space for hope.

 

Melanie Dimmitt  12:37

And he even said to us, "Look, I have a child that has-" and he didn't even say disability at the time, he was really gentle with the language. I think what he said was,  "-got something going on. And we find that when you're at home in your own bubble, everything's great. It's only when you're out in the world that you're sort of met with challenges of society." And he was bang on with that.

 

As you know, I'm sure you'd agree - everything's great in your bubble at home, it just gets challenging when you're faced with people's attitudes and things like that. So, he delivered it in a really gentle way. We were so lucky in that sense. And cerebral palsy is something that does leave a lot of space; it covers a huge range, there's a massive spectrum. So, I could dream that this was not going to impact any of his function. And, at the time, that was incredibly important to me. I could not imagine my son not being able to walk and talk, that was unthinkable to me.

 

Madeline Cheney  14:08

Well, that's so interesting to think about. As you're talking about this, I keep thinking of like, the stage of denial in the grief process, where the doctor kind of gave you that benefit of allowing you to kind of sit in denial for a little bit. And not that you were like, obviously he told you his diagnosis, it's not like you were in denial of the whole thing. But like, just to take it in steps of like, okay, let me process this for a second. And then to later slowly gather more information.

 

This just makes me think that that process of being in denial is actually a very kind spot for us to be able to sit in for a little bit. You know, this has a lot to take in, so you say that would probably have been a lot harder to have the whole thing thrown at you at the same time. But instead, you could kind of like process it for a while and then move on with the next layer of that diagnosis.

 

Melanie Dimmitt  15:03

Yes, denial is a very comfy place. I'd stay there for ages. Even after we got that diagnosis, with the amount of times I googled, "cerebral palsy misdiagnosis," I was just like, no, this is not my story. This is not my son's story. I knew nothing about cerebral palsy, or disabilities or anything; I was just under the assumption that it was all bad, terrible end of world stuff, which it is not, spoiler alert. But I couldn't fathom a world in which this was happening to me. So, I stayed in denial for a very long time, and was happy to do so.

 

Madeline Cheney  15:37

And it's kind of like, I mean, I relate with that so much, and probably most of us do, I'm guessing everyone listening right now. It's kind of like, "Well, I'm not a special needs mom. That's a special needs mom. And you know, look at that tiger, like, bless their hearts, they can do all these things we could never do, right?" Like, all the things that people say at or about or to us, the things that make us cringe, we've all said that or thought that about other parents when we see them out and about with their disabled children.

 

And so, I think there is this feeling like you mentioned earlier, like, "Well, things like that don't happen to me. And so, it's not going to happen right now." But of course, every single one of us are people who thought 'that would never happen to me,' and guess what, it does. So, I think it really is like the great equalizer - disability is part of life, and it can affect anyone and any one's child. And so here we are, we're the ones where it actually really did happen.

 

Madeline Cheney  16:30

It just makes you realize that everyone's just human and are evolving and figuring it out. And that anything could happen, which is also kind of, I think, a scary realization to have, like, "Whoa, anything can happen, and I'm not immune to things that are hard."

 

Melanie Dimmitt  16:46

It is thrilling, isn't it. But you also can't assume that you know how you're going to feel when certain things do happen to you. I thought a child with a severe disability, or any disability diagnosis, to be honest, would be the worst thing imaginable. If I had been told, "You'll have a disabled child," I would have never had children. It kills me to say that now, because I was a fool.

 

I had no idea that that's the person I was. I would look at a child who couldn't speak, in a wheelchair, and think - it's so hard to say, but I would think like, what's the point? Like, what an idiot, I just had no idea. And I thought, yeah, it's much better people than me that are having kids with disabilities, and that are fighting for their kids with disabilities. You just don't know, and you don't know until it happens to you.

 

Melanie Dimmitt  17:31

And there's so much work to be done so that people like old me don't feel that way. Our kids need to be out in communities, in schools. You know, I see with Arlo's sister how her perspective on life is completely different than mine was, it was so much more accurate. One in five people in Australia with disabilities, I think it's similar in the US. That's the world we live in, and disability is not a bad thing. But I really thought it was. So, when we got this diagnosis, and when it became clear that it wasn't the one-finger kind of CP, and that my son might not be able to walk, it was really unbearable for quite some time.

 

Madeline Cheney  18:07

Yeah. So, I would love to dive into that, because I think it's easy for people to be listening and be like, "Oh, well, I'm in the throes of grief right now. But Melanie and Madeline, they're fine with this. And I'll never get to that same point where just accept it, and they're happy about it." You know, and kind of like that chipper side of it.

 

But of course, anyone who's read your book knows that it was a really hard process, and there was some very visceral grief that happened that I think all of us -really, I mean, 99.9% of us, maybe excluding siblings who have a better understanding and better perspective - but most of us have a really hard time grappling with that. And so, do you mind sharing what that process was like when you kind of started to realize, "No, this is reality, and this is my life. And we're never going to be okay." Right? Like, the despair that settled in.

 

Melanie Dimmitt  18:58

I was so incredibly sad. And I remember I was still trying to work; I was writing for a magazine at the time in the city. And I went with my plan, despite what was happening. Arlo went into a mainstream daycare, and I went back to work after four or five months and went into the office and was soldiering on while I felt like my world was falling apart. But I kept crying, suddenly, at work, and I'd have to run out on the balcony and fold for a bit.

 

And I found I couldn't get joy out of my colleagues and my friends' news; like one of them got engaged, and got married, and I just couldn't-I couldn't feel happy for people the way I used to. Someone got pregnant, and I couldn't feel happy, and it was really hard. And it was just this heaviness that I was walking around. I was so sad.

 

I was still-I guess I was in bargaining mode. I remember saying to my editor at the time, "All is going to be fine. No matter what I am gonna be fine. I've made the decision. He's gonna be fine." And she was so kind, she was like, "Well, it's very brave decision."

 

I was a mess. And I started seeing a therapist, I think when Arlo was about six months. Well, it was after the diagnosis, so it would have been later than that. Maybe eight months. But pretty soon in the journey, I started seeing a therapist. And that helped me enormously, because she made me admit that what had happened to me and what was happening to our family was hard. I kept pushing it away and being like, it's gonna be fine, it's gonna be fine. This isn't happening. And she's like, "This is happening. And it's hard. And you're allowed to feel how hard this is and how significant this is."

 

And she made me dig into the wound and really feel it. And that helped me because I think until then, with anything hard that's happened, I've just pushed through, I've been strong. You know, my mom is one of 10 Irish Catholic strong women; we've always just moved through things and been tough. But I think, like you say, you have to sit in this. You have to feel the sadness. Again, we're working to make it so that people realize that a disability diagnosis isn't a sad, terrible thing, but you have expectations going into parenthood, parenthood is sold to us in this very specific, narrow way. So, of course, you have expectations, and if they're not met, you do grieve the loss of those expectations. You're not grieving your child, but you're grieving these ideas and dreams that you had for them and your family.

 

Madeline Cheney  21:14

Yeah, and then depending on the diagnosis, and you know, what that looks like for your child, I think a lot of that sadness and grief is also that part of it as well. But then also, you know, my child's suffering, or they have to go in and out of the hospital, and they don't like it, and the blood draws and sectioning, and just things that you can tell they detest.

 

And of course, if they detest it, then you as the parent detest it too because you're like, "I don't want to see my child suffer," which is such a basic human instinct. And especially as a parent, and as a mother, to protect your child from life threatening things, from painful things.

 

And so, I think there are these layers to the grief that we're feeling where it's the grief of, "I'm not supposed to be the one with a kid that's disabled." And, you know, "Disability is inherently bad and sad," and those types of things with our internalized ableism. But then also the layer where it's just this basic, instinctual resistance to the fact of, I don't want to see my child suffer, and I don't want I don't want to suffer either.

 

Like, this is harder than having a typically healthy baby, which, I think you feel bad saying, but of course, everyone listening knows. And we don't have to really say it but of course, we love them just as much; you know, has nothing to do with our love for them. But I think that that can also complicate our grief, where if you're like, well, if I'm sad, I don't want anyone to think that means I don't love my child, or I'm not grateful for them, or you know, those types of things. It's just a complicated thing.

 

Melanie Dimmitt  22:42

It is and then you bring the guilt. That's what you're talking about there when you feel guilty for feeling sad about your beautiful child who you adore. So many layers. And it's that whole thing when more than one thing can be true at the same time. When our kids are sick, suffering, have a good hospital, and miss out on fun stuff, that is unfair. There's no silver lining on that. Although I must say, Arlo loves our nurse family at the hospital, he does have a good time when he's in there. But there is no, like, nothing good to be taken from our kids' suffering and falling behind their peers. That's shit, undeniably.

 

But what is also true is that we're getting this layer of life or this understanding of the point of life and the meaning of life. And we're seeing the world and all its true richness, we have these eyes and this knowledge that we never would have had without them. And it's also true that we adore them, we love them. I know that Arlo has made me more of a mother than I ever would have been if I had just had typically developing children. He has changed me and made me surprise myself; I had no idea I had this in me. And that's amazing. Yes, there's so many things can be true all at the same time.

 

Madeline Cheney  23:56

Yes. And with that transformation that you speak of, I think it's much easier when you're further down the road, you know, kind of where you and I are, to be able to see that transformation and be like, "Wow, that's incredible, I have changed." But it's also so hard when you're in the thick of it. And you're just like, this just sucks. This is the goopy part of being in a cocoon, and I'm just a mess. And they change, and they're wonderful, but there's no way that I'm improving or gaining any kind of perspective or qualities that I want.

 

But I think for people listening who are in that situation, like in the thick of it, listening right now, it's kind of like, what changes us, is the question. And I think that those changes are always going to be painful. Like, if we are reconstructing our worldview and our perspective, things of that magnitude are gonna hurt like heck, right? And we're gonna resist it, and we don't like it because we're so out of our comfort zone. But like, what would you say? Like what does change us, and what is changing about us? That's something I haven't super thought about before.

 

Melanie Dimmitt  24:57

It's huge. For me, the perspective was a big one. Like I was saying, I was all, and I hate saying it now, but I thought disability was terrible. And for the people that couldn't walk and talk, what was the point? What kind of life is that? I now know, Arlo has shown me and just being in the disability community, I now understand there are so many ways to be. Who was I, thinking that walking and talking are crucial ingredients to be a happy, successful person in this life? What even is successful?

 

I see my son, he's the most popular kid in school, it takes people about five seconds to fall in love with this guy. He's going to be remembered by his teachers, remembered by his peers, and he's had more impact on this world than most non-disabled, walking, talking people ever will do. Not that he has to, for that matter. He is a human being on this planet. And he's great, and he is who he is. And that's that.

 

And I had all these preconceived ideas about who he would be, and he has just shown me how wrong I was about that. So, the change in me has been a big one perspective wise, I think that's been huge.

 

But also, the reserves I had. I'm pushed; you talk about it being hard, like, we get stretches of barely any sleep. I have to go in and stay in hospitals for long periods of time, and talk to doctors, and tell doctors when they're getting things wrong, and fight. And I had no idea I had that in me. But we will do anything for our kids.

 

And I've seen it, you know, I've seen parents start businesses, run the tube feeding space now, which has been woefully under-resourced for ages. I've seen mothers invent pouches of blended food that you can bring with you when you travel, like invent this stuff out of purely does the desire for their children to have better.

 

You know, they're saying, "Nope, not good enough. It's been done this way for so long, but that doesn't mean we keep doing it this way." Like, parents, I think our kids help us to find these incredible reserves and this incredible creativity within us. So that's been a big change for me as well, finding the things I never knew were there.

 

Madeline Cheney  27:06

Yeah. And, you know, I just thought one thing of that my sister said to me, that actually occurred to me over and over again, throughout this whole process. She was giving me a pep talk for something else entirely, before Kimball was born and stuff, but she said, "People say you get stronger with hard things." But she was like, "I think it's actually that you discover how strong you were the whole time."

 

I think someone else might have said that, and she was summarizing that. But kind of this concept that strength is within you, and you've had the capability to do the things you need to do for your child all along. But you never had a need to access those qualities or those things.

 

Madeline Cheney  27:42

And so, when you're in the hospital, or when you need these different resources for your tube-fed child, and these different needs come up, and it's paired with this love and this instinct to protect and care for your child... I mean, I think that is, not to sound cliche, but it is a beautiful thing. To see what types of things we're able to push through and get through as parents, when all those things are combined together. Right? It's just this crux of so much emotion going on - so much pain, struggle, love, tenderness, just all of it combines together. And it's, it's just a great thing.

 

Melanie Dimmitt  28:16

It is, and it's full on. You have to endure both extremes, unfortunately. And it's really hard on your body, and it's hard on your head. And it's really full on. But I'd also say another way, just talking to you, another thing that's occurred to me - another way that it's changed me is that I used to constantly question, before I had Arlo, what am I doing? What's the point in my work? What am I doing here? What should I be doing? That thought has completely disappeared from my head. Arlo has given me purpose. And I don't know if that would have happened if I had just had typically developing kids. I reckon I'd still be questioning, which is probably not a great thing to say.

 

I envy people who have kids and they're like, "Yep, that's why I'm here." I was never that maternal. I didn't dream about having kids. I really love my partner, so I thought, if we can have them, great. And we were so lucky that we did fall pregnant, and we did have them. But I always knew that I'd need more. And I was constantly questioning, what was the point of my work? What am I doing? I never, that question never comes to me anymore. It is so clear now what my purpose is. And it's to rebrand disability and disability parenting for people like me, and to try and help people at the start of this, because it took me ages.

 

It took me writing a whole freaking book to pull myself out of the sadness and the fear. I would have given anything for a crystal ball to check that Arlo would be walking when he was older. I just needed that, I just needed to check if he'd be walking. And I wish I could just tell that person to chill out.

 

Enjoy the beautiful baby in front of you, because now that he isn't walking, it makes sense. Your kid holds your hand through every stage of this; they show you what's going on. You don't need to know what they're going to be doing or not doing, because at the time you get there, it just makes sense.

 

Like, they often think, I don't want to know nondisabled Arlo, I don't want to know that kid because that's not my son. He is just him; this is what he does. But I remember at the start frantically wanting just a glimpse of the future, just to check that it would be okay. And okay being that he'd definitely be walking, definitely be talking. And I wasted so much time fretting about that unnecessarily at the start.

 

Madeline Cheney  30:40

Yeah, because I think there is that level of like, kind of that denial again, right? Like kind of trying to push that away, like, no, that's not me. That's not my life. Those are the people in the quote unquote, I'm doing air quotes. Yeah. Like in the worst-case scenario, which is not me, right? Like, we're not the ones on that end of the spectrum, that's other people. So, I would actually love to dive into that too, of like, what that was like. Actually, we kinda already talked about that, when you found out that he was on the extreme end of that, right?

 

Melanie Dimmitt  31:07

Well, it was gradual. Again, luckily, with CP - and we're still waiting and seeing what happens with Arlo - it was so gradual, sort of finding out what he'd be able to do and what he'd need support with. And even, you know, we had a great physio, who, again, I think, would have known that Arlo probably wasn't going to be able to walk independently. That she would work with us toward a walking frame, and then she'd talk about him maybe having sticks one day. She wouldn't say anything for certain, but she'd feed me this little golden gem, she'd say, "Oh, no, we get level fives who become level threes."

 

Not saying Arlo was a level five who will become a level three, but just sort of saying what I needed and having faith in knowing what I know now, which is by the time you get there, by the time you're trialing wheelchairs, you'll want that wheelchair. You're excited about that wheelchair. Bring on the wheelchair.

 

If you'd have told me when he got his diagnosis, he'll be in a wheelchair, I wouldn't have been able to handle that information. Again, we've got a lot of work to do around rebranding wheelchairs - they're amazing. But we were lucky to have a really thoughtful, experienced, amazing support team around Arlo of therapists and specialists. We've had a couple of duds, and we've had a couple of crappy things said to us, but we've held on very tight to the good ones, the good therapists and the good specialists. And they have supported us through this.

 

And Arlo, like I said, he grabbed our hand and has held it throughout and has just shown us what makes sense for him. And by the time we get there, it does make sense and it's not scary. And we're very excited about his wheelchair. We're excited about his next wheelchair, which is going to be a power wheelchair, which is amazing.

 

Madeline Cheney  32:51

Yeah, and that is kind of a case for I think a lot of, well, I think it's a mixed bag. Like in the rare disease world, if there's any research about it, it is kind of like a, "this will happen, and this will happen, and this will happen." Like how you get all the research they have about it. It's like one or two pages, and it's like, 'have a prescriptive,' that's what we got for Kimball. And it is kind of everything at once.

 

So, I think that's really interesting where there are people like you, where it's more of a broad thing, or a spectrum. And of course, every syndrome and every diagnosis is a spectrum because every person is different. But I just think that is so interesting how that impacted your evolution with how you navigated that, where it was kind of a slow thing and a fluid thing and like, "Well, we don't really know, and we'll see how this presents," more than like, "Well, this is how their life is gonna be and you've to accept all of it right now and process everything at once."

 

Melanie Dimmitt  33:43

I couldn't have done that. You know, some parents love researching, and they find that helpful. They find that they feel like they're being proactive - you know, we're talking about in these early days. I did not find that helpful. If you google quadriplegic cerebral palsy, which is what my son has, you get a whole lot of information about chronic pain and life expectancy and stuff that you just do not, or I did not want to see. So, again, put a team around him where if we need something or if he needs something, they'll tell me. I'm not there researching treatments, and it just wasn't helpful for me.

 

And certainly now, the thought of curing cerebral palsy...if you even can do that, I have no interest in that. It kind of frustrates me when charities and things put money toward that. I'm like, no, just please just support people and families who have cerebral palsy. So, I guess I really try and live in the day.

 

That was something when I was writing my book, the parents were telling me: stop thinking about the future. You just don't know if this experience teaches you anything. It's like we were talking before, anything can happen it anytime. It's a thrilling reality of being a person on this planet.

 

So, I don't research, I don't even know that much about cerebral palsy. I know Arlo, and I just let him show me what that is and what he needs, and I follow his lead. And as soon as I stopped frantically trying to "figure him out" and map out a blueprint for what was going to happen and what he was going to be able to do or not do, as soon as I stopped frantically trying to see the future, I got through the day is a lot easier.

 

Madeline Cheney  35:12

Yeah, totally. I relate with that so much, I think it's easier to see your child as your child rather than like, like a medical item - and I'm not saying that parents who research and are really on top of it are making their child an object to fix. You know, I don't want to imply that. But I do think that living in the moment and not getting super caught up in that, “what's their future gonna be like,” and, you know, “what's going on with this,” and “what's going on with that,” over the top of what they need medically, I think it allows you to be more on the parent side of that.

 

Because I think that something we sometimes feel robbed of is that, well, we're their caregiver, and we're their therapist, and just all these roles that get added on to the title of "parent." And I think a lot of us do feel robbed of just those everyday experiences.

 

But I think we do have a lot more power than we realize, like you say, living it day by day and just being like, it's just Arlo. I'll just follow his lead and we'll figure it out together. And we're just going to enjoy him exactly as he is right now. I think it helps - my son, he's in the preschool at the school for the deaf, and so he gets services there. And so now we don't have in-home therapies anymore, and I feel like that right there, like, "Man, I feel so much more in the role of mom now," which has been such a relief. And I know that not everyone's able to do that, but.

 

Melanie Dimmitt  36:30

Yeah, it's interesting at the start as well, because you do all the therapies, you do everything that everyone tells you to do, and you do all the homework. And if you add up all the hours of all the home therapies, and all the going to therapies, and all the traveling to therapies, and back from therapies, throw in a few hospital stays, there is no time to be a parent. And then if you have other children to be a family.

 

And it just sort of, while I was, again, interviewing for Special, I spoke to the inventor of the Upsee, Debby Elnatan, and she's amazing. She's got a son with CP, I think he's in his 20s now, and she just said to me, "Think about it. Do you want Arlo's childhood, and Odie, his sister's childhood, to be spent in therapy appointments? To be spent with Arlo just propped against a couch for hours on end? Do you want those to be the memories that your kids have of their childhood? Or do you actually want to have some fun as a family, have some downtime as a family, read some books, watch the movies have some laughs?"

 

She was like, "Just think about the memories that you're making. Yes, do the therapy, support them as best you can, do what they need. But just be conscious of the makings of their childhood and what they're going to remember from this." And that really stuck with me. And I went from you know, three hours and propping Arlo against the couch to maybe one hour opinion against a couch.

 

But then again, it depends; some parents love the therapies, they feel like they're being super proactive, I think especially at the start, you just want to be doing something. So, I found that really helpful. But you can then feel guilty for not doing enough, you can never do enough. And I think it's just important to remember that life is not all about being propped against the couch. There is more to life than that.

 

Madeline Cheney  38:06

Yeah. And more for you, too, like, she spoke about, "What do you want your children to remember about their childhood?" And it's like, and what do you want to remember, you know, as a parent, where I think the further you get into parenthood, the more you're like, wow, this is really fleeting. And I think as parents, we remember a lot more of it than children when they're really young, right? You don't remember earlier memories as well.

 

But, like, that's also something that as parents we do deserve. I mean, it's not gonna be the parenthood that you envisioned - it's gonna be different, because now disability is thrown in there, and medical complexity. But I do think that it can be more of the way we pictured than we realized, you know? I think at first, we're like, "Well, everything's flipped on its head," but I think things really you can throw in that normality in there.

 

Melanie Dimmitt  38:48

Absolutely, you've just reminded me as well, I read Kelle Hampton's book, Bloom, in the early days of Arlo getting his diagnosis. And I found that really helpful because her daughter has Down Syndrome, and she says in the book, "You think, oh, this is completely thrown-" I'm definitely paraphrasing here. She writes it beautifully.

 

But you know, this is thrown parenthood, it's not going to be how you thought. She's like, you still get so many of the things; you still get to go to the baby clothes store, and pick out the beautiful outfits... You still get so much. You get most of it. And you know, you get other stuff as well that's not necessarily bad.

 

Like, this experience has bonded our family in a way that I don't think we would have been bonded, had to not happened. You get the extremes, like extreme joy, extreme challenge. But yeah, you do also get a lot of the cute stuff, and a lot of the fun, and a lot of the birthdays, and the cakes, and you can make this what you want, and you don't miss out on so much of this. And I think it's important to sort of be reminded of that in the early days, and I definitely recommend reading Kelle's book Bloom, that really helped me at the stop.

 

Madeline Cheney  40:02

Yeah, I'll link that in the show notes to that. That's great. I think all of us have experienced to those moments of, you know, a birthday party or something like that. And just being like, this feels so good, right? Because I think those good moments, they're just such a contrast to the hospitalizations or the other really tough days.

 

And so, I think those good moments can feel so much better. But especially if you're allowing yourself to feel the bad stuff too, because I've definitely been through phases where I was so numbed out - kind of like you were talking about in the beginning, like we're fine, we're fine, we're fine - and not allowing yourself to really think about how this is actually really hard.

 

I think when we accept that it's very hard, we also are able to accept the joyous moments and the tender moments a lot easier too. And I've learned, I'm like, I'd much rather be very aware of the hard and have more pain than to be numbed out, because you just feel like a hollow version of yourself.

 

Melanie Dimmitt  40:57

Absolutely. You want to feel the feelings. And as my therapist tells me, that's the only way to work through them as well. You've just got to wallow in it for a good while.

 

Madeline Cheney  41:07

Gosh dang it, right? Like...

 

Melanie Dimmitt  41:08

I know, right? You got to deal with it.

 

Madeline Cheney  41:13

Yeah. So, thinking back about, kind of the earlier days when things were really hard and dark and scary, and you were just in the throes of that those early days, do you have any memories of one of those bright, shining moments of like, "this feels so good, and I feel so happy right now?"

 

Melanie Dimmitt  41:31

Oh, yes. It was realizing that Arlo kind of knew what was going on, and he was developing passions. We were sort of dealing with a whole bunch of things that he probably wasn't going to be able to do, so it would have been about the time that he was, maybe just before he was one. And it was becoming clear that, yeah, walking was going to be an issue. He wasn't sitting up or anything like that, he couldn't even roll over. He still can't; we're still working on that.

 

And we, you know, in spending a lot of time with our neighbors who have a daughter of similar age as Arlo, so I had clung to this woman, my friend Susan, we'd hung out a lot together in the beginning stages. And it was getting really awkward because she was sort of saying, "Oh boys develop a lot slower than girls," and saying all these nice things to me. And it was becoming very apparent that no, there was a lot going on here. And we'd often watch movies with the kids, and we'd watch Moana a whole bunch, and I started sit on the couch with Susan and the kids and we'd watch Moana.

 

And then, I remember, we were driving somewhere in the car with Arlo, Ro, myself, and Arlo, and I was getting really grisly in the back. And we were like, shit. What do we do? Let's try and play some music from Moana, just see what happens.

 

And the second the first note of the first song played, Arlo lit up. His whole face, like, he was so happy. And we were like, he knows. Like, this kid isn't just sitting there, not really watching the film. He's a Disney fan. He loves Moana, he loves music. And it was such a simple thing, but just realizing, seeing that connection and seeing that our kid was developing genuine passions - for Disney, which was great for Moana, which was great - that was a real moment of light.

 

And we sort of thought, you know, okay, if this kid can have fun and have passions in life, then this is great. This is amazing. So, that was definitely a moment of light.

 

And look, Arlo himself… if I actually stopped freaking out about the future, and put myself in the moment, and looked at my child, and enjoyed my child, he's always been such a charmer. The smile on this kid seriously. And he's always been into books, always been into music. The times when I would bring myself to him, they were always light. Always. It was only, you know, I was doing it to myself. And it's completely understandable, and it’s completely natural, but so much of the suffering in those early days was self-inflicted, and it was not necessary. And if I had just stayed focused on Arlo, I could have saved myself a lot of it.

 

Madeline Cheney  44:08

Yeah, I think like, the lot of that pain that we have in the beginning, or you know, the resistance we have to our child being disabled, or like, "No, not me, not our life, not my son," I think it does come from kind of what you perceive their life will be like, and the quality of life issue, and how we're like, "Oh, well, if they can't walk or talk, like what kind of life is that?"

 

And I think that there is this wonderful moment when you see that your child's life isn't just deficits, and it's not just  hospitalizations, and all of those things. It's like, no, this is a person - and look at this joy he's finding out the song that he loves, or the books. And, you know, just seeing those passions, like you say, I think those really are kind of the redeeming fact of it all. You're like, wait a minute, no, we're actually fine. Like, if you can be happy in life and I can be happy in life, we're fine.

 

Madeline Cheney  44:57

And so, I think that is, like, I can totally see why that was such a monumental moment or like, "Okay, we're gonna be good. Like, he has passions, and he finds joy in those things." And obviously, that doesn't like fix everything right? You still need a process to everything. But I think, I can see why that was so meaningful.

 

Melanie Dimmitt  45:14

It was. And it's funny, you're just reminding me as well, like, a lot of my - hate using these words, again - but a lot of my sorrow at the start was because I didn't want to be that family, it was a lot about aesthetics, for me. I was a very shallow person coming into this, I didn't want to be the family with the kid in the wheelchair, because I knew how I looked at families with kids in wheelchairs. I didn't want to be that family. That was a big issue for me. Whereas now, I'm like, man, how boring is it if you don't have a kid with something? And it took a while to come there, but now I'm like, oh, whatever.

 

Madeline Cheney  45:54

You almost feel like bad for them. Like they're poor, typical non-disabled kids. Like they don't have anyone with disabilities in their whole family. Like how boring is that. (laughs)

 

Melanie Dimmitt  46:01

Yeah, like where's your edge? What makes you interesting? (laughs)

 

Madeline Cheney  46:04

So true. And then, if you see other families, right, you're out and about and you're like, "That kid has hearing aids!" Or like, you know, anytime you see one of your people say like, "Can I checkup... like, can I talk to them?" You know, which I think is just such a fun feeling. Contrast with like, the kind of isolation I think we can feel from the non-disabled world, but I think, yeah, it's so fun to get excited about it. What a contrast, you know what I mean? Like such a contrast to how we perceived it before.

 

Melanie Dimmitt  46:32

Yeah, and it's really special, which is why I called my book "Special." It has nothing to do with our kids, who are not actually that special disability is pretty common, and they are a kid, just with different needs. But the 'special' that I'm referring to is what we get, which is this special experience of parenthood and how much we learn and how much it opens our eyes. And that is, yeah, it's so special. It's a club I'd never wanted to join, but now I couldn't imagine not being in.

 

Melanie Dimmitt  47:00

I was you. And it is fucking hard at the start. And there are moments even now where you know, Arlo gets another diagnosis, or he has a hospital stay, and I go back to that place. And there will be times when it is very, very hard throughout this. But the start is the worst, because your kid hasn't had a chance to show you what this means and who they are. Disability is often a very scary, unknown, abstract concept.

 

And yeah, when your kid is a baby, newly diagnosed, you don't know what this is going to look like for them yet, but I promise you, they will show you, they will show you beautifully in their own time. And with them besides you leading the way, it will all make sense. They've got you; you just have to trust them and follow their lead.

 

Madeline Cheney  47:00

Exactly, totally. Well, I would love to wrap up, and I feel like we've kind of danced around, like this has kind of been what we've talked about the whole time. But what would you like to say to listeners right now who are kind of in the 'goopy' stage, right? Like, kind of in that cocoon of, "Okay, well, you say you grew from that. But like, that can't be me. I'm in too much pain, I'm too weak. I'm not one of those strong moms." What would you like to say to one of those listeners?

 

Melanie Dimmitt  47:41

The start is awful. I feel for you. I promise you, you will feel differently in time, but for now, just feel the feelings. See a therapist, please, God, look after yourself in that way. That helped me enormously.

 

Listen to this podcast, find your community. You might not be ready to actually meet other parents raising kids with disabilities, luckily, we have amazing podcasts like this one where you can plug in, you don't have to say anything, you can just tune in and listen to people who are going through similar things that you're going through. And that makes a world of difference as well.

 

Madeline Cheney  48:49

I love that. And I'll throw in there, read Melanie's book. Like seriously, I think it's like if you're an auditory person, the podcasts are great. If you are a book reader, the book is great. Do both, right? Like, I think that's spot on. I love everything you've said. And I do think that a huge factor in all this is the therapy, like I'm definitely a recipient of the therapy. Go figure out a way to do this. Which I know it's hard, it's easier said than done. But then also finding that community, whatever way you can, where you just know that you're not the only one going through this.

 

Melanie Dimmitt  49:21

Yes, we're here. And we're here for you, whenever you're ready. There's millions of us.

 

Madeline Cheney  49:26

Yeah, totally. Well, thank you so much, Melanie. I had so much fun chatting, and I feel like we talked about such important concepts, and I am just so grateful for the good that you do in the world of parents of disabled children. So, thank you so much.

 

Melanie Dimmitt  49:40

Right back at you, Madeline, and thank you so much for your incredible work and for sharing so many of our stories so beautifully. It's been an absolute treat to finally chat with you.

 

Madeline Cheney  49:50

Thank you. You can find adorable photos of Melanie and crew on the website, therarelifepodcast.com. There's a link in the show notes for that. Also, be sure to follow Melanie and me on Instagram, if you don't already, where we are teaming up to give away a copy of her book Special and a scented candle - which I love combining those two, reading with a candle lit. Preferably in a hot bath. So, this giveaway is in hopes that you will gobble up the book while soaking in a candlelit bath too. Don't pretend that doesn't sound amazing. There are links in the show notes to follow us there so you can enter the giveaway. There are also links to purchase her book if you want to cut straight to the chase, and to access her magazine, The Blend, as well as the other items that we mentioned in the episode.

 

Madeline Cheney  50:41

Join me next week for an episode in honor of Rare Disease Day, a compilation of a bunch of parents sharing what they love about their rare kiddos, and the moments they feel the closest connection with them. It is a really beautiful and tender episode that you do not want to miss. In order for it to release right on Rare Disease Day. This episode will be released two days early on Tuesday of next week. I hope you listen in and feel the warm and fuzzies with us. Don't miss it. See you then.

Episode Comments

Juston

Feb 23 2023, 5:54am

Another great episode! Thanks for sharing.

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Ep. 119: Your Child’s Medical Team | How to Push Back, Ask Questions, and Build Your Dream Team w/ Dr. Kelly Fradin, MD https://d3ctxlq1ktw2nl.cloudfront.net/staging/2023-2-23/319744619-22050-1-1e2071eee4df4.m4a

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