Emily Writes on parenting a medically fragile baby, online bullying, prioritising sleep and acceptance

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SUMMARY

Join Carly and Emily as they discuss what it takes to parent a medically fragile baby, the online bullying Emily received when speaking out against sleep trainers, and how her family does sleep in their house. Join the conversation as it moves on to the 'just f*cking doing it club' and accepting what is. 

You can find Emily by subscribing to her newsletter, Emily Writes Weekly and on Facebook, Instagram, her website, and on her podcast 'The Mother Yarns'

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FULL EPISODE TRANSCRIPT

Carly:

The Beyond Sleep Training Podcast- a podcast dedicated to sharing real tales of how people have managed sleep in their family outside of sleep training culture because sleep looks different with a baby in the house and because every family is different there is no one-size-fits-all approach to take.

I’d like to acknowledge the traditional custodians of the land on which this podcast is being recorded, the Kalkadoon people, I pay my respects to the elders of this nation and the many other nations our guests reside in from the past, present and emerging. We honour Australian Aboriginal and Torres Strait Islander people and the unique cultural and spiritual relationships to the land, water and seas as well as their rich contributions to society including the birthing and nurturing of children.  

Carly:
And welcome back to the Beyond Sleep Training Podcast. I’m your host, Carly Grubb, and for today’s episode I’m welcoming the beautiful Emily Writes. She’s somebody who I hugely admire for the work that she’s done online, and I can safely say she was also one of the people who saved a whole heap of my sanity because she was so bloody relatable in her amazing writing and talking about the way life was really with kids in her house, and certainly was one of the people that I found who I could… I could always trust to go to her page, and I would end up feeling warm in my heart after I’d been there. So, thank you so much, Emily, for joining us today.

Emily:
Oh, thank you so much, Carly. That’s so nice.

Carly:
Now, Emily’s all the way over in New Zealand. And I’ll do a little intro for you. So, you are the mum of two gorgeous, little fellows called Eddie and Ronnie, or Ham. I’m pretty sure Ronnie was Ham in your early writing.

Emily:
Yeah. Yeah.

Carly:
And you have a few different places that people can find you, like Emily Writes on Facebook and Twitter I think as well.

Emily:
Instagram. Yeah.

Carly:
Instagram. Got it. And you’re the author of two awesome books, Rants in the Dark and Is it Bedtime Yet? Rants in the Dark, honestly, if you haven’t read it yet you’ve got to. It’s… I remember the first time I had it we were on holidays and my husband, I’d be laying back having a bit of a read, and I would either be laughing my head off out loud, or like the very next page bawling, and my husband’s like, ‘What are you reading?’ I’m like, ‘It’s just so good.’ It was just the most beautiful read. So, if you haven’t read that one yet, check it out. And that turned into a stage show as well, didn’t it?

Emily:
It did. Yeah. The show toured New Zealand and was going to tour Australia but unfortunately COVID-19 killed my dreams.

Carly:
COVID! It’s done that to so much stuff. But maybe one day. Maybe one day.

Emily:
Yeah.

Carly:
We can all like…

Emily:
Fingers crossed.

Carly:
Yes. And you’ve started on a newsletter, which I subscribe to, called Emily Writes Weekly. It’s an amazing little drop into your inbox each week. If people haven’t seen it and you’re looking for your weekly funny and wise, then sign yourself up. And you’ve just also launched yourself a podcast.

Emily:
I have. Yeah. The Mother Yarns is a brand new baby. It just came out last week.

Carly:
Wow. Nice and fresh.

Emily:
Yeah.

Carly:
And are you enjoying recording?

Emily:
Yeah, I am actually. I’m surprised at how much fun I’m having with it.

Carly:
You’ve got a sidekick as well, so I think that’s part of the fun, isn’t it? You’re actually having a conversation.

Emily:
Yeah, yeah. I’m very lucky to have Rebecca Keil as well. So, we just went on tour together and did twenty shows together, and we just sort of fell in love with each other. So, we were like, ‘Let’s do a podcast so we can still hang out.’

Carly:
Awesome. Yeah, very cool. Well, if people haven’t checked it out, that’s another one to subscribe to while you’re busy subscribing to our one as well if you can. Now, we are actually here to talk about how sleep was handled in your family. And I will try to do very little talking if I can help it. So, would you like to, once you… you can introduce yourself and how you kind of came to find sleep with your family.

Emily:
Oh. Kia Ora. Um… Well, yeah. I think that I had very strong opinions before I had my babies. I think, like a lot of pe… a lot of parents I was a really great parent before I had kids. I knew exactly what to do and what not to do. I knew that I would definitely not have kids in my bed. And I think I even made the point of saying that parents who have kids in their bed are crazy. And why would you do that to yourself? So, I had… I was quite sure that, you know, like I made a beautiful nursery for my firstborn, Eddie, before… while I was pregnant. It was really, really cute and had a big cot and everything. And we had a wahakura [5:00], which is like a… I guess that’s like the Māori version of a like, Moses basket. And so, our baby would be sleeping in that for like two, three weeks, and then would go into the cot. And then obviously they’re sleeping through the night from six weeks, because I read that’s when they sleep through the night, obviously.

Carly:
Obviously.

Emily:
Yeah. And so, I was all set. And then when our baby, Eddie, was born he was born not breathing properly, and we quite quickly realised that there was something wrong with the way that he breathed and that he was very, very small. And we could, like every breath he took we could see it in his chest, and we knew something was wrong. So, he eventually came home and was in the wahakura laying in between us in the harakeke flax basket. And we would watch him really closely at night. And then he was probably only about two months old, and we were like, this is really bad, something is really wrong with his breathing. We’d talked to a lot of people about it, and they had all kind of said, ‘Oh, I don’t know. It looks like stridor, or it might be something else.’ Eventually they agreed, and he had his first surgery on his trachea at about two-and-a-half, three months old.

And, you know, it really changed everything for us, because we had that attitude of like, as long as our baby’s healthy that’s all that matters. And we had like one view of what it was to be a parent, and it was not like having a baby that was really sick and at such high risk, was not part of our plan. And so, quite early on we were like, ‘Wow, everything changes.’ You know? And when you’re in the children’s ward every night you’re like, your baby’s being woken constantly for checks, you’ve got the sound of a ventilator keeping you awake, you’ve got all the beeps of the hospital, you’ve got all the nurses going back and forth. You know, we just weren’t sleeping obviously. But to us, every morning that we woke up we were just like, ‘Oh, thank God our baby’s still with us.’ You know.

We suddenly realised that the priority was just as long as our baby was okay. And he had more surgeries, more treatments, and our paediatrician said to us, ‘Make sure you sleep in the same room with him and watch his breathing.’ We had, you know, Angelcare monitors, we had like breathing monitors to make sure he was okay. And it really changed our view of sleeping, because all I could see online was everybody saying the things that I had thought before I was a parent. That, you know, the priority is have them in their own room. You know, don’t have them in bed with you. You know, teach independence and all this other stuff. And it was just, we were just grateful each morning when, you know, he was there, and that we were right next to him and that he was doing okay. And we started to learn how much you, when you have your baby in bed with you, you can monitor their breathing so much. You know? You can keep an eye on them. All of those things. And I just started to see this whole, you know, you’re creating a rod for your back and stuff like that. I started to see it for the bullshit that it was, because I had a baby who… you know, I was around parents who would do anything to have a baby who didn’t sleep all night. You know? Because they're… they were losing their babies or had lost their babies. And, you know, he eventually started to get better. We still had to monitor him all the time. So, yeah, eventually after when he was about three years old, he started to sleep on his own, with us going in through the night occasionally to check on him.

And then we had our second baby. So, our second baby was kind of our test of like what do you do when you have a so-called healthy baby that you don’t need to keep an eye on at night. And I was surprised at how quickly those messages that I’d seen online infiltrated me, even though I’d already done this with my firstborn. Like, I had been quite confident with my firstborn. I knew we were doing the right. We had the backing of our paediatrician. We had the backing of our GP. Every other parent [10:00] in the children’s ward did the same thing, slept with their babies. You know? Yeah, we kind of had been quite insulated in that, like children’s ward, parents of medically fragile children, disabled children, and that kind of world where everybody co-sleeps. Everybody has their babies right next to them. Nobody expects to be able to sleep because that’s just what life is like.

Learn more about Safer Sleep

But then with my second, yeah, I was really surprised at how all of the pressure to have a sleeping baby by six weeks and have, you know, have a baby in their own room sleeping twelve hours, you know, having day naps, I was really surprised that all of that stuff just got inside my head. And I started to get really miserable. Like, why doesn’t my baby sleep? And he was so young at the time. Like, I shouldn’t have even expected him too. But the interesting thing was I think my mental health took a bigger hit with all of that pressure around sleep, almost more than it did with having a sick child in hospital, because in hospital I had all these other parents who would be like, ‘Oh yeah, none of us are getting sleep.’ You know, there was lots of solidarity, lots of love, lots of support for each other. But then you go into this other world where it’s like, in coffee group people just… I never did coffee group and stuff the first time around because my son was too sick. So, in coffee group when mums were like, ‘Oh, my baby’s sleeping through the night from two weeks old,’ and I just felt like, what? What? Is that a thing?

And then I started to write about what it was like having this baby who was doing normal not sleeping stuff at that stage. And I started to get all these sleep consultants messaging me saying, ‘Oh, I’ll get your baby to sleep in two days.’ Or I’ll do this and that. And, you know, I remember one of them, I was like, well, what’s the harm? I’ll give it a try. And she said, ‘Oh, I’ll do it for you free if you like write about me on the thing.’ And I was quite desperate. So, I was like, ‘Oh, I will give this a go.’ And she gave me like this 18 page, like this is how you need to structure your day. And I started doing it, and I’ve never been so anxious in my life. Like, it was planning out your day to the minute. Like, you get to play with your baby for eight minutes, and then you get to, you know? And I was so stressed out about it. Like, it was making me crazy. And then I did it for like four days and was almost… had almost lost my mind. And then I got to like the fifth day, which was like ten pages in or something, and I saw another child’s name in the document. And I realised that all they’d done is cut and pasted out the name of the child to put my child. And I just looked at it and I was like, what made me think this was a good way to do things? Like, the pressure got so much that even, I had trusted my instincts with a sick child, I had got through having a really medically fragile child, my child almost dying, and yet the stress of sleep consultants in my inbox constantly was almost worse than that, going through that stuff.

Because once I started to talk openly online about how, ‘Oh, actually, you know, I think some of these sleep consultants, it’s like a rort, and they’re really upsetting mums.’ When I started to talk like that and I started to get these horror stories from mums about being told they need to leave the three-week-old baby to cry, and them feeling so disconnected and developing PND symptoms, when I started to talk about that online the aggression that I got from the sleep consultant industry was quite terrifying. Like, they started to say that my child… my first child was sick because I hadn’t given him enough sleep. They said that my…. my second baby would develop sicknesses, and how could I be so selfish having had one baby only survive and now I’m doing the same to my other baby. And I was really shocked by just the aggressive vitriol of that… that industry, because so much money is being made.

Carly:
It’s absolutely…

Emily:
Yeah, it was… it’s so vicious. And like, I started to really develop like really bad PND, and also, I just felt really gaslit. Like, I knew I was a good mum, and I was working hard to be a good mum. But I was exhausted. [15:00] But yet I had these people in my inbox who were financially invested in me shutting up about what sleep training can be like, saying to me, ‘You have PND because you don’t sleep’. Not because they’re in my inbox every day telling me I’m a terrible mother.

Carly:
Been there!

Emily:
Yeah. Yeah. And you have PND because you don’t sleep. Your child’s going to have psychological problems because you haven’t prioritised sleep. Which made me laugh so much, that you’ve got to prioritise sleep, because I think nobody prioritises sleep better than families with medically fragile children. We have got it down to an art form. We know how to prioritise sleep.

Carly:
Oh, and of course like a wakeful baby’s family isn’t prioritising sleep. Like…

Emily:
Yeah. Yeah.

Carly:
Are they absolutely out of their mind? Like, wow.

Emily:
Exactly, yeah.

Carly:
Yep. I don’t think there’s anyone who could be more focused on it.

Emily:
Yeah. Yeah. Exactly. And I guess I started to… I’ve always had a pretty keen, like sense of I really hate injustice, and I really hate powerful people hurting less powerful people or hurting vulnerable people. So, I started to feel this real like rage about how the system was hurting mothers and how the system was profiting off hurting mothers and making them believe they weren’t good mothers. So, I started to write more about it, and just wrote about what it’s like to not sleep. But also, just wrote about surrendering to it. You know? This is this part in time where life is like this, and it does change. It does get better. Btu it is just a part of parenting. You can’t wish it away. Like, just like there were times in hospital where I thought I would give anything for my son to not be covered in tubes unable to be held. You know, that’s no different to laying in bed and going I wish my baby would sleep. You know, these are all moments and times that you can’t change. You can’t change them. You can’t have somebody come in and be like, ‘Pay me $299 and I’ll write you an 18 page thing on how to get your baby off a ventilator.’ Or, you know, like, this is what life is like for some people, and sleep is similar. You know.

And so, I guess I… it really helped me that my husband was very supportive. He’s Māori and comes from a cultural background where sleeping with your children is quite normal. So, I was lucky to also have that… that deep sort of respect, and that he has for our children around their needs to sleep at night. And yeah, so basically my youngest’s sleep continued to be really bad. He only slept for 45 minutes at a time and couldn’t seem to get into a REM sleep cycle. A lot of people said that was my fault. I went… but I knew in my gut that it wasn’t. So, I went to actually the head of one of New Zealand’s specialist sleep people and talked to them about his sleep, had a referral and appointment. And basically, he was diagnosed with an auditory processing disorder and a couple of other challenges, like neuro-divergent challenges. And so, I realised that had I followed these, you know, orders from sleep consultants and others I would have been hurting his brain. He literally could not help that he could not sleep. And when we had a diagnosis, he went into early intervention therapy. He’s doing really great. He is six now and is just the most awesome kid, and he sleeps every night with me, and we have a very set routine that is perfectly suited to what his brain needs in order to sleep. And I just have no regrets over how I handled things, because I knew inside… something inside of me said you’re not wrong about your babies, and some random person who wants you to pay them money to tell you you’re not a good mum, they can’t possibly know your child.

So, I’m really glad that I had this approach of just parent the child that you have.

You know? Because I think that a big turning point for me was when Eddie was in hospital and really, really sick, and I was just about to have a complete breakdown and a nurse came in. And I was just sobbing and she said to me, [20:00] ‘Can I help?’ You know, ‘How are you feeling?’ And I said to her, ‘I just can’t do this. I don’t know how to parent a child this sick. He needs, like a better parent than me.’ And she just said to me, ‘You know, all you need to do is love them, and you are the parent that Eddie needs.’ And those two pieces of advice have come together to be my entire parenting philosophy, and particularly when it comes to sleep, because I am the parent my child needs. They need a parent who can be gentle and surrender to not sleeping as much as maybe other people would, who can, you know, prioritise sleep, which is what we do in our house. I have naps. I do as much as I can to make sure that I can get through the day in a healthy and happy way, and the same for my kids.

And all I do is love them. You know, that’s one thing I can do. I may not be able to get them to go to sleep at exactly the same time and sleep, you know, 15 hours or whatever the latest thing they’re saying babies can do is. But I can love them, and nobody else can do that better than me.

So, that’s kind of been my approach. And now when I see my kids at six and eight, I just feel like I did it right. I don’t know what right is, but I know that I look at my kids and I’m like, I… they’re just such great kids and they’ve had really big, big challenges in their lives, and I’ve been able to ride those challenges with them as much as I can, even though I can’t take those challenges away from them. But I’ve been able to take every step with them and that matters to me. That’s what being a mum is to me. And so, I feel like I’ve honoured them and… and where their needs have been, if that makes sense. Yeah.

Carly:
It makes perfect sense, and that’s just such a beautiful way of looking at the… it’s like, you know, it comes back to that whole it’s that simple and that hard…

Emily:
Yeah.

Carly:
… when it comes to parenting little people. There’s not always, like just because it hard… it’s hard, doesn’t mean that you’re doing anything wrong. But it all comes down to some really simple things, like you say, being able to just love them and trust that what you’re doing will be what they needed in that moment, and that’s just a gorgeous way to be. Can I ask, because you had this super wakeful person, and even with your first guy, with… I know you had had hospital support and whatnot, but was there anything that you found particularly helpful for you and your husband to help to be able to keep going, to be able to keep up?

Emily:
Yeah.

Carly:
Was anything that helped you out in that way?

Emily:
Yeah. I really feel like naps are like everything. So, my husband and I… my husband and I had had like a really strict nap philosophy, which was basically if either of us could give the other some time we would be like, ‘Oh, okay. Do you want to have a nap?’ And we would be down there and asleep within like ten minutes of asking that. And I think, you know, being really strict about naps helped us a lot. We would use whatever time that we had for a wee nap. So, I still held down a job through this, and sometimes we’d be in hospital all night and then looking after Ronnie during the day and that type of thing. And likewise, my husband would do the same. But we would say, ‘Okay, Sunday morning. Do you want to have a nap till like 10, 11 o’clock?’ Or something like that. And then we would switch the next day. Or ‘Do you want to go to bed early, and I’ll do… I’ll be there if they wake up?’ And that really helped us. And the other thing was to just really surrender to… like get rid of the expectation that we would be getting sleep, and then it was like a nice surprise when we did, if that makes sense. Like, now, you know, he sleeps through… through the night really well, but will occasionally wake up during the night and want to have chats and stuff like that, because we’ve now… we now understand his brain just doesn’t need as much sleep as other children. And so, I am quite used to it now and will, like, chat away and stuff like that. But when my husband comes home from work sometimes, he’ll be like, ‘Oh, do you want to have a nap?’ So, even now I will have naps, and I can fall asleep in like three-and-a-half seconds. So, I really think [25:00] get good at napping. Like, I can have a nap anywhere. I can have a nap in the car while waiting for the kids. I’m real good at napping.

Carly:
Wow. That’s awesome though. I don’t… I love the fact that, like, none of that required being strict on the babes. It’s all just being strict with adult napping.

Emily:
Yeah. Yeah. It was really…

Carly:
That’s what you can control, isn’t it?

Emily:
Yeah.

Carly:
Like, that’s where you can have a bit of a say.

Emily:
And I’m really grateful that my husband… I mean his attitude to sleep has helped me a lot. He’s just kind of like, you know, when our son was six, our eldest son, he was diagnosed with type 1 diabetes, which was a whole… turned our lives upside down. And part of having type 1 diabetes, especially if you have kidney damage and no thyroid, all those issues, is you have to wake every two hours to test you child and check their glucose levels. And, so now we’re back to that era again of waking up as much as a newborn, but with our oldest. And I just love that my husband has this attitude of just like, this is what it is and I’m not going to feel sorry for myself about it. Like, he just doesn’t do that. He’s like, you know, he will let me have a bit of a pity party sometimes and say I’m really tired. He does my… he does our oldest boy’s wake ups and I do our youngest’s wake ups. But he will just be like, ‘How lucky are we to have these two amazing kids.’ And he can just kind of keep his mood at that level, or his attitude at this level of just like, we’re so lucky we have him. We’re not going to be sleeping in the same bed for a while. Oh well. It’ll be fine. And we do other things, like have a cuddle on the couch, or something like that, to try and keep, like, just that, you know, close feeling and stuff like that. But he’s just really chill around, ‘Oh, I’m going to go to bed.’ It’s like 8 o’clock or 7 o’clock or something like that. And, yeah, he’s just… I think it helps so much to have a partner who’s… who’s on the same page as you and, you know, very… with a really positive attitude around sleep. We just take the attitude that our kids… we’re just going to be up a lot because we have a medically fragile child. It’s just how it is, and we wouldn’t swap our kid for the world, so that’s it. You know? And you just kind of get on with it.

Carly:
Love it.

Emily:
Like, I think that whole thing of…

Carly:
Just accept it.

Emily:
Yeah. It’s acceptance and it’s like, you’re just fucking doing it. You know? Like, this is the whole thing of, you know, I’ve said this so many times, but when people like, ‘Oh, you must be so tired. How do you do it?’ And all this. And it’s like, you just fucking do it. Nobody else is going to do it for you. You know. There’s no need to have, you know, this… I will have a cry sometimes and all that, but I just am also a big believer in just like, ‘Oh, fuck it. This is what life is like right now and we’re just getting through. We’re doing it.’ You know? And I think that that ‘you’re just fucking doing it’ attitude helps.

Carly:
Absolutely. That was actually, I think it was probably the first article of yours that I ever read was your ‘Just fucking doing it club’ one.

Emily:
Yes.

Carly:
And I was just like, yes, yes, this is exactly it.

Emily:
Yeah.

Carly:
This sums it up entirely. Like, just fucking doing it. Like, there’s no, I’m not magic. I’m not super mum. I’m not any of those things.

Emily:
No.

Carly:
I’m just doing it. And that’s all there is to it.

Emily:
Yeah. Yeah.

Carly:
But I just love that, and it’s just such a… I love that your husband is able to help keep that attitude around the house as well too.

Emily:
Yeah.

Carly:
Because that must be such a boost. Because I know for me, I sometimes need someone to give me a boot up the bum to actually get back...

Emily:
Oh definitely. Yeah. Yeah. Yeah, yeah.

Carly:
… out of my funk I’ve got myself into.

Emily:
Yeah, yeah. Yeah.

Carly:
So, that’s really, really good.

Emily:
And I think it is really easy to spiral. You know, I’ve been there where you’re just like, ‘I’ve had no sleep, and tonight I’m not going to have any sleep.’ Like, you know, I’m just totally there sometimes. Like, I remember that fucking awful heart beating feeling where you’re just like laying in bed like there’s no point me falling asleep. I’m going to wake up in a minute. Like, I can feel that in my bones still after all this time. But I… I think that what has helped me the most is just going, this is such a… like, it’s a shitty time, but I’ve got through it before, and I’ll get through it again. You know? Like, and that has helped me so much because when I get in that spiral of, ‘I just want sleep. This is not fair.’ When I get in that ‘this is not fair’ spiral - it’s not fair that I have a sick kid. It’s not fair that my other child can’t sleep without me. All that. My husband will be like, ‘Yep. Let’s get on with it.’ You know? And I kind of love that. [30:00] Like, I just need that, well, you know, you’re allowed to have a moment of like, this is bullshit, but then, you know, we keep going and we get on with it. Yeah.

Carly:


Yeah. Yep.

Emily:
And I think that, you know, we don’t celebrate that enough in… in mothers and parents, this ability to just fucking do it.

Carly:
Yeah.

Emily:
And I’m like in awe of all the mums who can do that, and I think it’s sad that, you know, I think the sleep consultant industry and others, the media and a lot of society, paints mothers as being these really weak, you know, women who are fragile and they cry lots, and they can’t cope. And mother’s these days can’t do anything, blah blah. And I just call absolute bullshit on that, because I think mothers are strong. They’re powerful. They do so much for their communities, for their kids, for their families, for their partners. And I just think I want to turn the narrative that way, to how frickin’ powerful mums are and how amazing they are to get through every day and do so well, despite the fact that they have these industries trying to make money out of them and they have this media trying to create this narrative around them, and that type of thing. So, I think, yeah, celebrate mums.

Carly:
Absolutely. 100%, absolutely with all of that. Now, I’m just looking at our time, and we’re just about done. So, you’ve given us so many tips, but can I ask if you have a specific tip of the week that you’d love to share with our listeners to finish us off?

Emily:
Oh. Yeah, I think it’s just to take moments to say you’ve got through, and you’re going to keep getting through. Take those wins and remind yourself that when you’re having a really hard day, it’s a day, and tomorrow is a new day. And like, I know what it feels like to have those dark clouds forming and dread the night-time, or the daytime, or anything like that. But just know you’ve got through before and you will get through again.

Carly:
Awesome. Beautiful advice. And I’d like to thank you so much for your time today, Emily. It’s been an absolute treat. And yeah, thank you. I’ll be sure to drop all the links to your things in the show notes so people can find you as well. Thank you.

Emily:
Thank you.

Carly Grubb:

I really hope you enjoyed the podcast today the information we discussed was just that information only it is not specific advice if you take any action following something you've heard from our show today it is important to make sure you get professional advice about your unique situation before you proceed whether that advice is legal, financial, accounting, medical or any other advice. Please reach out to me if you do have any questions or if there's a topic you'd really like us to be covering and if you know somebody who'd really benefit from listening to our podcast please be sure to pass our name along also check out our free peer support group the beyond sleep training project and our wonderful website www.littlesparklers.org. If you'd like even more from the show you can join us as a patron on Patreon and you can find a link for that in our show notes if listening is not really your jam we also make sure we put full episode transcripts on our little sparklers website for you to also enjoy and fully captioned YouTube videos as well on our Little Sparklers channel so thanks again for listening today we really enjoy bringing this podcast to you.

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