Latest / Tom's Hirschsprung's Podcast / Episode 132 - With Natalie Little

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Episode 132 - With Natalie Little · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshbrung's Podcast, a space where
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Speaker 1: we talk openly about living with Hirshbrng's disease. Whether you
0:09
Speaker 1: live with it, care for someone who has it, or
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Speaker 1: just want to understand more, this podcast is for you.
0:15
Speaker 1: Each episode, we will explore real stories and honest conversations
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Speaker 1: about a condition that often goes unheard. Thank you for
0:22
Speaker 1: tuning in.
0:43
Speaker 2: Hello, and welcome to episode one hundred and thirty two
0:47
Speaker 2: of Tom's Hirshbrung's Podcast. I am delighted to be join
0:50
Speaker 2: this evening by Natalie. Natalie, welcome to the podcast. I uh,
0:55
Speaker 2: thanks so much for coming on. We are here to
0:59
Speaker 2: talk about your daughter Zwe and her experience with her
1:05
Speaker 2: sprungs and it's been well, quite a journey so far. Yet,
1:10
Speaker 2: please start from wherever you would like.
1:14
Speaker 3: Yeah. No, she's definitely stolen the limelight on this one.
1:20
Speaker 3: She's a year and a half. She was a little
1:22
Speaker 3: bit over a year and a half, she'll be too
1:23
Speaker 3: in August, and she was five days old when they
1:28
Speaker 3: put a stomer in. She actually was born in the
1:31
Speaker 3: Conquest Hospital in Hastings and at two days old she
1:35
Speaker 3: ditched me and took off to Brighton Hospital, which is
1:41
Speaker 3: actually a two hour drive from where we live because
1:43
Speaker 3: we live in the Styx, and left me behind, which
1:48
Speaker 3: was really traumatic actually, and she was blue lighted up
1:53
Speaker 3: to Brighton and her stomach was quite swollen. She was
1:56
Speaker 3: actually born like two months early, and she never she
2:01
Speaker 3: never went to the toilet. And when I got up
2:05
Speaker 3: to Brighton, she was put into the tremor Man Baby Unit,
2:08
Speaker 3: which was absolutely phenomenal. If anyone's ever been up there,
2:11
Speaker 3: they are fantastic. There was all sorts of babies up
2:15
Speaker 3: there that were some of them were twenty two weekers,
2:18
Speaker 3: Like it is insane what they can do in there.
2:23
Speaker 3: But yeah, she was five days old when she had
2:25
Speaker 3: her stoma purse put in, and she was three weeks
2:28
Speaker 3: old when she was diagnosed with Hirschbruns, which I've never
2:31
Speaker 3: ever heard of in my life. And that's actually how
2:35
Speaker 3: I came across you on TikTok, who shed some light
2:39
Speaker 3: because I had no idea anything about it. I thought
2:44
Speaker 3: instein when they told me that it was a disease
2:47
Speaker 3: of like the intestines, but they would cut it out
2:51
Speaker 3: and she'd be fine and the disease would be gone.
2:54
Speaker 3: But that's not the case. So we've had like we've
2:59
Speaker 3: had her poul free surgery as well, and she's had
3:03
Speaker 3: her STA closure. Her PULL three surgery was not straightforward
3:09
Speaker 3: at all and then as I said, she was in
3:12
Speaker 3: there for eleven hours and we had to have it
3:14
Speaker 3: in Southampton, which is three and a half hours away
3:18
Speaker 3: from me. And yeah, they closed her up and I
3:23
Speaker 3: realized she had more ganglion cells and opened her back
3:27
Speaker 3: up again to get the rest of it. But she's
3:31
Speaker 3: a little truper actually, she even thigh like. She has
3:36
Speaker 3: so much going on all the time. We've actually got
3:40
Speaker 3: to have further treatments and whatnot. She's always so happy,
3:45
Speaker 3: like you would not think that she struggles or anything
3:49
Speaker 3: like that. She is such a happy little girl. We've
3:52
Speaker 3: literally just done a massive fundraising thing for Ron McDonald house,
3:58
Speaker 3: which we always stay in, and she's greeted everybody with
4:03
Speaker 3: a smile on her face. She loves the attention, absolutely
4:06
Speaker 3: loves it, even from all the nurses, and we just
4:11
Speaker 3: raised just under four grand. Yeah, we don't quit it.
4:17
Speaker 3: But also with trying to raise awareness because I don't
4:22
Speaker 3: know many people with hirshrungs. I don't It is so
4:25
Speaker 3: rare and we were lucky. When Nesme was actually diagnosed,
4:31
Speaker 3: there was another little boy that was in the Trevor
4:34
Speaker 3: Mann Baby unit and who was also two diagnosed with
4:38
Speaker 3: hirshrungs at the same time, and they were the only
4:41
Speaker 3: two that year in Brighton. So we actually, I think,
4:46
Speaker 3: I do think things happen for a reason. That actually
4:49
Speaker 3: we've got a family that esmay will grow up with
4:52
Speaker 3: a friend that understands her. So that is like the
4:57
Speaker 3: most beautiful thing. But at the moment, she's doing okay.
5:02
Speaker 3: We are recovering from a bug, which I do find
5:05
Speaker 3: that it's not a forty eight hour game. She's been
5:09
Speaker 3: recovering since last Friday and it's been a week so
5:13
Speaker 3: far of her being ill. It's not fun.
5:21
Speaker 2: Now, Yeah, we are susceptible people with her sprungs. Our
5:26
Speaker 2: immune systems aren't as great as other people, so it
5:29
Speaker 2: can take us a little bit longer to get over things.
5:32
Speaker 2: I guess.
5:33
Speaker 3: Yeah, I don't even know where she got it from.
5:35
Speaker 3: Because I'm a hermit. I don't really come out that much,
5:40
Speaker 3: and like we do, I'm very vigilant, always wash her hands,
5:45
Speaker 3: I always keep everything incredibly clean. The only thing I
5:50
Speaker 3: could think of was airborne when I went to the
5:51
Speaker 3: hospital to have a check up, and then she must
5:55
Speaker 3: have caught it in the area, because I have no
5:58
Speaker 3: idea where she got it from. She That's one thing
6:01
Speaker 3: I will say is that she's so susceptible to stuff,
6:04
Speaker 3: and fortunately she does blow it out of proportion when
6:08
Speaker 3: it comes to a bug. So if someone someone has
6:11
Speaker 3: a bug and it's like a forty eight hour thing
6:13
Speaker 3: or twenty four hour thing, she will hold on to
6:16
Speaker 3: it for a very long time and she will recycle it,
6:19
Speaker 3: so she will get rid of it for a little
6:21
Speaker 3: bit and then get it back straight away if someone
6:23
Speaker 3: else gets it in the house. So, yeah, it's a pain.
6:30
Speaker 2: Yeah, definitely sounds like it really sounds like it. If
6:34
Speaker 2: we're going back to so diagnosed after yes, diagnosed after
6:41
Speaker 2: three three weeks, yeah, which is quite I mean it's
6:46
Speaker 2: the same time I was taken to diagnosed, which is
6:48
Speaker 2: quite a long time. I think. So were they were
6:51
Speaker 2: they sort of testing for other things or was it
6:54
Speaker 2: just it.
6:55
Speaker 3: Was the basically when they did the biopsy, it was
6:58
Speaker 3: sending it off, so they don't test for in Brighton.
7:01
Speaker 3: They sent it off to London Hospital and then they
7:04
Speaker 3: confirm it and then it takes a while for them
7:06
Speaker 3: to get back to Brighton. I think they run under
7:09
Speaker 3: two different trusts. I'm not entirely sure, but they have
7:13
Speaker 3: to send it off. We weren't going anywhere. We was
7:17
Speaker 3: in hospital for a long time. I said, Esme was
7:18
Speaker 3: prem so do you know what? She was actually quite
7:22
Speaker 3: healthy weight. She was a five pounder. She did drop
7:26
Speaker 3: to like four pounds, but she was quite a healthy. Wait,
7:30
Speaker 3: but we was in hospital for about five and a
7:32
Speaker 3: half weeks, I want to say, So we stayed in Brighton,
7:37
Speaker 3: No it was in six weeks. So we stayed in
7:39
Speaker 3: Brighton for five and then we came to the Conquest.
7:42
Speaker 3: She caught a bug and they thought she had seccess
7:46
Speaker 3: and then the NG tube went back in and everything else,
7:50
Speaker 3: and we was there for like a whole other week.
7:52
Speaker 3: Well because she stopped wieing And I didn't even know
7:54
Speaker 3: that was a thing until had Esme, but she completely
7:57
Speaker 3: stopped wiiing and the stools were like really lose. Her
8:02
Speaker 3: stoner at the time was really overactive and actually quite uncontrollable.
8:07
Speaker 3: But yeah, it's so weird to think now that she
8:11
Speaker 3: doesn't she doesn't have a stoner anymore. But what we
8:15
Speaker 3: do have is like we're currently at the moment going
8:18
Speaker 3: through so on the fifteenth. She she has had this before,
8:22
Speaker 3: but she was small when we could do it when
8:24
Speaker 3: she was small. But because she's big now, she will
8:26
Speaker 3: fight and she can perforate her bow. So she's going
8:30
Speaker 3: to have a bow wash out on the fifteenth and
8:34
Speaker 3: she's also going to have dilation treatment start again. So yeah,
8:40
Speaker 3: I'm a bit I'm a bit gutted because we when
8:43
Speaker 3: she had her stona closed I think it was when
8:47
Speaker 3: was it May of last year, and we've had dilation
8:54
Speaker 3: treatments weekly up until January of this year, and we've
8:59
Speaker 3: finally got celebrated that she was no longer going to
9:02
Speaker 3: have them, and I was really really happy. I was
9:04
Speaker 3: like doing fantastic and we did. We did a little
9:09
Speaker 3: celebration and everything, and basically Esme's never been able to
9:13
Speaker 3: do a solid pooh. Ever, she struggles and we kept
9:18
Speaker 3: going back in like I was like, something's not quite right.
9:21
Speaker 3: And then last I think it was two weeks ago,
9:23
Speaker 3: we ended up in hospital because Esme took I think
9:28
Speaker 3: it was like eighteen hours to get a poo out.
9:32
Speaker 3: She couldn't get it out. She was having we do
9:34
Speaker 3: she does drink coconut Walter daily. She loves coconut Walter,
9:38
Speaker 3: and she has mother Cole and things like that. So
9:41
Speaker 3: she does have medication. But the problem with Esme's pull
9:45
Speaker 3: through is that there is like a sitchure. I think
9:47
Speaker 3: it's called a sitcher, but it's about ten centimeters up
9:50
Speaker 3: where they had to go back in and they think
9:56
Speaker 3: that she's retaining pope where it's a bit tight up
9:58
Speaker 3: there and it's not all coming through. So I think
10:03
Speaker 3: that she started vomiting and she couldn't go and even
10:07
Speaker 3: with medication, and then they were like, she's going to
10:10
Speaker 3: have to have dilation treatments and bow washouts. We've got
10:15
Speaker 3: to think free sessions. That my surgeon for Esme's absolute phenomenal.
10:21
Speaker 3: Like if anyone ever has her doctor sheef, she is
10:26
Speaker 3: absolutely amazing. She is quite confident that it can be
10:31
Speaker 3: controlled by medication like bow management medication stuff. If not,
10:37
Speaker 3: then it could possibly mean surgery, which is the worst
10:41
Speaker 3: worst case scenario. But I'm hoping that these treatments will
10:46
Speaker 3: hopefully resolve what's going on and then we can do
10:51
Speaker 3: medication obviously. But yeah, like I said, she gets sick
10:55
Speaker 3: and then she she gets it quite bad. And I
10:58
Speaker 3: feel like if she's not getting all poo out, she's
11:01
Speaker 3: retaining the virus like as well, there is that, so.
11:07
Speaker 2: Yeah, all going on though, yeah it.
11:10
Speaker 3: Is, it is all going on, and it doesn't help
11:13
Speaker 3: because she's she's a remarkable little girl, like because she
11:17
Speaker 3: was so used to having a stoma. I think she
11:19
Speaker 3: was about eight months old and she started using the
11:21
Speaker 3: potty because she refused to, like she wouldn't go in
11:24
Speaker 3: her nappy. She didn't like pulling a nappy. But I
11:25
Speaker 3: think because her stools are quite acidic when they first
11:28
Speaker 3: come through, they burn a skin, and so she started
11:32
Speaker 3: going on the potty. But where you have like a
11:36
Speaker 3: flare up, I think this week, I think I changed
11:40
Speaker 3: in one day, like twenty eight nappies. She just couldn't stop.
11:44
Speaker 3: And like she's very good. She hydrates herself incredibly well,
11:49
Speaker 3: and she does drink diralite. She just she would just
11:52
Speaker 3: do it. She like knows her body. It's she's so smart.
11:56
Speaker 3: But yeah, where it's like so aggressive sometimes and she's
12:01
Speaker 3: got like no time. The potty training goes straight out
12:05
Speaker 3: the window. But when she's normally fine, she will go
12:08
Speaker 3: on the potty and it's Yeah, that's amazing.
12:12
Speaker 2: Though for say a year and a half nearly two,
12:16
Speaker 2: to know your body that well, he is incredible. I
12:21
Speaker 2: mean that that's that's amazing.
12:23
Speaker 3: She does Like that's where I get a bit worried
12:26
Speaker 3: because she's such a massive foodie. She's like me. She
12:30
Speaker 3: loves her food, but she she'll stop eating but all together.
12:35
Speaker 3: But she will drink loads and loads of fluids, like
12:39
Speaker 3: the fluids will triple if she's not feeling well. And
12:42
Speaker 3: I don't know where she gets that from because it's
12:45
Speaker 3: not me. I'm terrible with fluids, and she she will
12:50
Speaker 3: drink loads, which is like probably what actually keeps her
12:53
Speaker 3: out of hospital sometimes. And we do like like when
12:56
Speaker 3: I say, my surgeon for airs is absolutely phenomenal. She
13:02
Speaker 3: will do anything she can to keep hers at hospital,
13:05
Speaker 3: to isolate her and keep her safe. So she were
13:08
Speaker 3: actually we just recently like so she did have a bug,
13:12
Speaker 3: like I said, she's still not one hundred percent now.
13:14
Speaker 3: She's had like she slept a lot today sortably trying
13:17
Speaker 3: to recoup some energy. But I emailed her secretary. Within
13:23
Speaker 3: an hour, she got in contact with me, and we
13:26
Speaker 3: had a care escalation plan in place because as May's
13:31
Speaker 3: as May's flare up was so violent this time that
13:33
Speaker 3: she actually started plassing blood where the lining of her
13:37
Speaker 3: intestine had worn away, that was the protective layer, and
13:41
Speaker 3: where her poos are so acidic. She ended up actually
13:44
Speaker 3: having black stools type seven, which is like really really watery,
13:50
Speaker 3: and it was a lot, and it was just because
13:53
Speaker 3: her intestines began to get sore with the amount she
13:56
Speaker 3: was going which I never actually thought that was a
13:59
Speaker 3: thing until recently. It just was going through all too quick.
14:05
Speaker 3: But she is she has started eating now, but she's,
14:08
Speaker 3: like I said, she's really smart. So she'll like have
14:11
Speaker 3: crackers or plain foods like toast, things like that. I like,
14:16
Speaker 3: I do try and offer her other things just to
14:18
Speaker 3: see if she's feeling better, and she'll like if she
14:21
Speaker 3: wants to have a bit of pizza or something else,
14:24
Speaker 3: but she will always go to the plain food still,
14:27
Speaker 3: so I always know, like, you're not one hundred cents,
14:29
Speaker 3: she's not talking fully, she can, she just chooses not to.
14:33
Speaker 3: That's a different store. She's very selective. I'm going to
14:37
Speaker 3: put it down to her older siblings, but she at
14:44
Speaker 3: this age still knows her body and she does indicate
14:47
Speaker 3: sometimes if she does have tummy krans that she puts
14:50
Speaker 3: my hand on her belly and she gets me to
14:52
Speaker 3: rub a belly. But it's just I feel like it's
14:55
Speaker 3: just she's so used to it that this is the
14:57
Speaker 3: norm for her that she just I feel this way,
15:01
Speaker 3: I'm going to do this, and it's incredible because yeah,
15:04
Speaker 3: she's going to be too in August, and she does
15:08
Speaker 3: stuff that I even now if I feel rubbish. I'm
15:11
Speaker 3: terrible drinking. I'm terrible with eating bland foods, like I
15:16
Speaker 3: probably do the worst thing possible that makes me more poorly.
15:20
Speaker 3: And my daughter would drink direlyte like yeah.
15:25
Speaker 2: Amazing, amazing. Yeah, I think you're right. A lot of
15:30
Speaker 2: us are, especially when we get to being adults, are
15:32
Speaker 2: so bad at drinking. To be honest, I'm the same
15:36
Speaker 2: to drink way more than I should, especially having earth bruns.
15:40
Speaker 2: But it's yeah, you're just get into horrible habits. But
15:44
Speaker 2: that's amazing that she knows her body, that she knows
15:47
Speaker 2: her body that well, that she goes well like the
15:51
Speaker 2: bland food she said, you know, yeah, and sort of
15:54
Speaker 2: building that immune system, I guess back up until she
16:00
Speaker 2: feels better.
16:02
Speaker 3: It's really smart. I mean, I had surgeon said the same.
16:05
Speaker 3: To be fair, she was like, Esme knows her body,
16:08
Speaker 3: even though she doesn't speak it out loud. She was like,
16:12
Speaker 3: even when she comes into hospital that like she knows
16:15
Speaker 3: what she can and can't have, she will choose the
16:18
Speaker 3: better option. I wish I could be like her. I'm not.
16:22
Speaker 3: I'm actually I've just not long found out I'm pregnant again.
16:28
Speaker 3: I'm nervous about because obviously we're gonna have the baby
16:31
Speaker 3: in Brighton, but I'm coming up to thirteen weeks now,
16:38
Speaker 3: but obviously there's a risk of her sprungs again, so
16:41
Speaker 3: I'm nervous obviously. Like now I'm a doctorate in a
16:45
Speaker 3: way with theirs, but like I don't drink at all,
16:51
Speaker 3: and my doctor's like, you need to drink more, you
16:53
Speaker 3: have to drink more. And then there's Esme who sees
16:56
Speaker 3: my squash in a glass and it's like a massive
16:58
Speaker 3: pint glass and she'll drink it the whole thing. She'll
17:03
Speaker 3: just help herself. It's bad. She's yeah, I don't know
17:09
Speaker 3: where she gets it from because she eats healthy as well,
17:11
Speaker 3: and me and Jordan aren't healthy people. She loves her
17:17
Speaker 3: vegetables like she goes straight for like green veges all
17:20
Speaker 3: the time, like broccoli, peas, things like that, And I'm like,
17:23
Speaker 3: that's actually really good for your gut. So someone must
17:27
Speaker 3: be telling you because I always do it. I do
17:32
Speaker 3: do it, Like she good diets, so she eats a
17:34
Speaker 3: lot of fish and things like that that are quite
17:36
Speaker 3: helpful because I find the onions cause a flare up
17:40
Speaker 3: for her. Yet she loves onion rings, but they don't
17:42
Speaker 3: seem to cause her a flare up. But onions seem
17:45
Speaker 3: to set her off or leaks like anything from that
17:48
Speaker 3: sort of family, and she will flare up. Yeah, that's
17:54
Speaker 3: the only thing I sort of found out. Oh and
17:56
Speaker 3: cheap oils. If someone cooks chips in really cheap oils,
18:03
Speaker 3: it goes straight through her. She's not very she's not
18:09
Speaker 3: very appreciative of that because she does like the odd chip.
18:11
Speaker 2: So thank you quality oil though.
18:14
Speaker 3: Yeah, she's got very very fine tastes.
18:18
Speaker 2: There's nothing wrong with that, nothing wrong with that at all.
18:22
Speaker 2: But you just what you said, Just congratulations. I've never
18:25
Speaker 2: had someone announce a pregnancy on a podcast before congrastulations.
18:30
Speaker 3: Thank you. I wasn't sure if I actually I've been
18:32
Speaker 3: ten everyone, because I've been I've always wanted two kids,
18:35
Speaker 3: but like when Asme got diagnosed and everything that we've
18:39
Speaker 3: gone through, the show of airs, I was like, Ohm, surprised,
18:43
Speaker 3: I haven't got PTSD, to be fair, because it has
18:46
Speaker 3: been traumatic every time we've had we do crack jokes
18:49
Speaker 3: over time because I've got a very warped sense of humor.
18:52
Speaker 3: It's our way of like surviving. I suppose obviously when
18:57
Speaker 3: I say, oh, she ditched me to go to the
18:58
Speaker 3: hospital a different and that was the most traumatic time
19:03
Speaker 3: of my life. I was an absolute rack because when
19:07
Speaker 3: we was in hospital, they didn't tell me how serious
19:09
Speaker 3: it was. I think they just didn't want me to worry.
19:12
Speaker 3: And when Esme was put in the ambulance, the lady
19:15
Speaker 3: that was taking her up there turned around, went no,
19:18
Speaker 3: this is critical, and they went and I was left
19:23
Speaker 3: behind because I wasn't discharged. I wasn't allowed to go.
19:26
Speaker 3: I from twenty weeks of pregnancy couldn't walk properly because
19:30
Speaker 3: Esma was on an old sports injury, so I was
19:31
Speaker 3: actually on crutches. And they said to me when I went,
19:34
Speaker 3: if I had gone to full time, I would have
19:36
Speaker 3: been on a wheelchair because I was such a full drisk.
19:39
Speaker 3: I couldn't. I kept losing feeling in my legs. She
19:41
Speaker 3: was literally on a psiatic nerve. It was really but
19:45
Speaker 3: but I don't know how this pregnancy is going to go.
19:46
Speaker 3: Some might be dude, but it was My hips already
19:52
Speaker 3: started to go some I feel it. But yeah, she
19:57
Speaker 3: was carted straight off and it was really traumatic. But
20:00
Speaker 3: like being Jordan, always a crack a joe, But she
20:02
Speaker 3: just wasn't getting enough attention, so she went elsewhere for it.
20:06
Speaker 3: She wanted everyone to see her, but it was, you know,
20:11
Speaker 3: it's been like really really tough. But at the same time,
20:15
Speaker 3: like I just think some of the nurses and especially
20:18
Speaker 3: like I said, I can't rape my surgeon enough, because
20:21
Speaker 3: she is absolutely phenomenal. I'm so glad that we ended
20:25
Speaker 3: up with her because surgeons are the most impossible people
20:28
Speaker 3: to get hold of. Yet she's easier to get older
20:30
Speaker 3: than my GP. She's always on the line and she
20:34
Speaker 3: even when we was in Portugal. We went to Portugal
20:37
Speaker 3: last year Esma's first holiday. We got two days of
20:41
Speaker 3: grace with her before she got two different strains of
20:43
Speaker 3: E coli and we was in a spell. But even
20:47
Speaker 3: when she ended up in hospital. Doctor Sheef was on
20:51
Speaker 3: the fine to that hospital we was at with her
20:54
Speaker 3: emergency care plan. We had emergency antibotics with us.
20:57
Speaker 4: Anyway, and and there was a care plan in place
21:02
Speaker 4: to get her safe to fly home to get a
21:05
Speaker 4: further treatment, and it was it was phenomenal, like she
21:08
Speaker 4: was like this, this is my patient, this is what
21:11
Speaker 4: you do.
21:12
Speaker 3: I know her literally inside and out. And I was like,
21:15
Speaker 3: cool on she tell them, but she was. She was phenomenal,
21:21
Speaker 3: and yeah, she's very passionate. So I have to say,
21:25
Speaker 3: like I mean every time, it's taken me a long
21:29
Speaker 3: time to come to terms with Osmo's diagnosis because when
21:33
Speaker 3: you're a parent and you first hear like all this stuff,
21:38
Speaker 3: for me, I think I went into shock and it
21:40
Speaker 3: never sunk in. So she was telling me like literally
21:44
Speaker 3: think at some point last year, about six months ago.
21:46
Speaker 3: I'd probably say more than six months ago, but she
21:49
Speaker 3: was like, nah, I did say to you that she's
21:51
Speaker 3: going to come in and out of hospital. The free
21:53
Speaker 3: surgeries aren't going to be the last thing. Sorry, my
21:56
Speaker 3: cat's like, go away that these surgeries aren't going to
22:03
Speaker 3: be the last thing. Because I kept getting in my
22:05
Speaker 3: head like free surgeries and we're done free surgeries and
22:07
Speaker 3: we're done, and then obviously the weekly treatments come in
22:11
Speaker 3: and I was driving two hours up the road so
22:15
Speaker 3: that Esme could have dilation treatment and yeah, so I
22:22
Speaker 3: kept thinking, oh, I thought this was going to be over.
22:24
Speaker 3: And she was like, Natalie, I've explained to you so
22:26
Speaker 3: many times that Esme is going to need medical treatment
22:31
Speaker 3: throughout her life, a little bit of assistance here and there.
22:35
Speaker 3: It's not going to be all over. And to get
22:40
Speaker 3: come to terms with that was really really hard for
22:43
Speaker 3: me and Jordan, it kind of sunk him from him.
22:46
Speaker 3: He kind of accepted it straight away, but for me,
22:48
Speaker 3: like she was saying things that she told me previously,
22:51
Speaker 3: and I was like, you didn't tell me that. You
22:53
Speaker 3: didn't tell me that. She's like, I have told you,
22:56
Speaker 3: but it just never it's like she told me. But
22:59
Speaker 3: it just over with it because I just I don't
23:02
Speaker 3: know if it was like a state of shock, because
23:03
Speaker 3: I was just like, not my girl, Like it's so
23:07
Speaker 3: it's so weird. But despite everything, she just she always
23:13
Speaker 3: surprises everyone, Like with her eleven hour surgery, she was
23:18
Speaker 3: out within three days, Like no one expected that. We
23:22
Speaker 3: thought we were going to be in for at least
23:23
Speaker 3: a week. She was up and playing the next day
23:26
Speaker 3: like she just had full stomach reconstruction surgery and it
23:31
Speaker 3: was like it was nothing. Looked like she was so resilient.
23:35
Speaker 3: I mean, babies are anyway, but she takes it in astride.
23:39
Speaker 3: I mean even now when we go into the hospital,
23:42
Speaker 3: she just sort of just hands the hand over ready
23:44
Speaker 3: for the cankiler. She just get it over with, Just
23:48
Speaker 3: do what you need to do. She always has the
23:51
Speaker 3: young with them, but she just she knows what they're
23:54
Speaker 3: going to do and she just lets them do it.
23:56
Speaker 3: Although the temperature thing never lets them take their temperature,
23:59
Speaker 3: she still kicks off over that. And I'm like, you
24:00
Speaker 3: just let him put a canula in life, but you
24:04
Speaker 3: won't have a prmometer underneath your armpit.
24:09
Speaker 2: I mean, it makes no sense to me, but I
24:12
Speaker 2: that no. I mean she just sounds like she does
24:16
Speaker 2: just amazingly well, you know, for someone so young to
24:21
Speaker 2: understand so much about a condition so rare is incredible.
24:28
Speaker 3: She understands herself more than I do. And I've done
24:31
Speaker 3: so much research on it now that I'm just like,
24:34
Speaker 3: how right. But I think she's just yeah, I mean,
24:40
Speaker 3: she surprises me all the time, all the time. Every
24:43
Speaker 3: day is a surprise, and I'm just like I always think,
24:46
Speaker 3: like when were having a flare up, we just don't
24:48
Speaker 3: there's no point going up because you're you're you're changing
24:52
Speaker 3: her all the time and stuff, and there's no point
24:56
Speaker 3: going out. And I keep thinking, oh God, she's going
24:58
Speaker 3: to be so grumpy and she's going to be like
25:00
Speaker 3: really upset or things like that, and then should just
25:03
Speaker 3: be the brightest smile on her face. Or she'll try
25:05
Speaker 3: and play hide and seek with you, which she's terrible at.
25:10
Speaker 3: I have to pretend she's really good, but she's not.
25:14
Speaker 3: She just thinks if she hides her face like this,
25:17
Speaker 3: or she hides a blanket over half her face that
25:19
Speaker 3: if she can't see you, you can't find it.
25:24
Speaker 2: Logically, that makes sense for a one one lily two
25:28
Speaker 2: year old, it makes sense.
25:31
Speaker 3: Yeah, I'm so mean, and this not just ma actually laughs.
25:38
Speaker 3: So she gives herself away every time you were really
25:42
Speaker 3: not that good. Just maybe she just doesn't understand the
25:45
Speaker 3: game yet. I's just here, had her little shoulders go
25:49
Speaker 3: and it's just like serious.
25:52
Speaker 2: Ah, as long as she's having fun.
25:54
Speaker 3: Ah she does, Yeah, I know she does every day
25:57
Speaker 3: every day she is. I mean, like when she's been
25:59
Speaker 3: like I said, ill recently, she's still smiling, she's still
26:04
Speaker 3: on the go. And I was poorly as well. So
26:07
Speaker 3: obviously she got it straight back off of me after
26:10
Speaker 3: I caught her bug and she'll stroking my hair and
26:14
Speaker 3: patting my back, like all the things that I do
26:16
Speaker 3: to her to make her feel better. She started doing it.
26:19
Speaker 3: I mean, I'm like, oh my god, baby, you felt
26:21
Speaker 3: like this, like and then I think, oh my god,
26:23
Speaker 3: you must have felt worse because of the Hirshbruns that
26:26
Speaker 3: you must have had cramps and all this lot alongside it,
26:29
Speaker 3: and you just you're like a terminate. I'm a massive
26:31
Speaker 3: baby compared to you, Like I'm like dying and you're
26:35
Speaker 3: just like mama, like come on no, mama, Like and
26:40
Speaker 3: I'm like, how are you still going? You're amazing?
26:47
Speaker 2: You do you find that with a lot of not
26:50
Speaker 2: just Harshbrungs, but a lot of chronic illness children, they
26:54
Speaker 2: are very resilient, very high pain tolerance threshold. Yeah, what
27:01
Speaker 2: tends to hurt I'd there's a lot with Hirshbrung's people
27:04
Speaker 2: anyway that what tends to maybe hurt other people a lot,
27:09
Speaker 2: maybe hurts us less because I guess we've had so
27:12
Speaker 2: many surgeries and a lot of invasive stuff, and we
27:15
Speaker 2: do get the stomach cramps and we kind of You're
27:18
Speaker 2: not saying we're superhuman or anything like that, but we
27:21
Speaker 2: do kind of. Yeah, our pain tolerance is probably at
27:25
Speaker 2: a dangerously high level. Yeah.
27:27
Speaker 3: I feel like she's desensitized, Yeah, quite a bit, Like
27:32
Speaker 3: because there has been times I'm like, oh my god,
27:35
Speaker 3: doesn't that not hurt her? And then she's just yeah, no,
27:40
Speaker 3: And then like you know where most kids would be,
27:44
Speaker 3: you know, in bits Esme just takes it in astride,
27:48
Speaker 3: like this is like her everyday life. She just yeah,
27:54
Speaker 3: she just don't know how she does it, honestly. She
27:56
Speaker 3: she's always got a smile on her face, even when
27:59
Speaker 3: she's like interacted with people and stuff and all. That's
28:02
Speaker 3: the only thing I will say is like, sometimes what
28:05
Speaker 3: gets tiring is that a lot of people, I suppose
28:09
Speaker 3: we're quite naive to it. I was when I first
28:11
Speaker 3: heard of it. But it's like having to explain to
28:15
Speaker 3: them that, you know, a bug's not just a bug.
28:19
Speaker 3: If she gets a cough and a cold, she might
28:20
Speaker 3: fight it, but if it affects her gut. Then we're
28:23
Speaker 3: done forced its and it's like, you know, Hashbrungs is
28:28
Speaker 3: with them because the amount of people that got Oh, well,
28:29
Speaker 3: she's cured now. And I'm like, I wish, I wish
28:35
Speaker 3: I know the hospital wards so well now that literally
28:38
Speaker 3: and then the nurses I phone up and they're like,
28:40
Speaker 3: you're right, it's Ma's mum, Like they know me as
28:43
Speaker 3: a mom. How is z? How is she? And when
28:46
Speaker 3: she goes in, even when she's ill, they'll still high
28:48
Speaker 3: five her. She'll walk in with her hand, They're ready
28:50
Speaker 3: to high five, and I'm just like, how, Like, you're
28:56
Speaker 3: as sick as a dog and you're still high fiving
28:59
Speaker 3: people coming through? It is I think it is just
29:04
Speaker 3: so she's so does they sensitized to it? Because even
29:07
Speaker 3: with this bug recently and her bleeding, like you know,
29:11
Speaker 3: having an internal bleeding, she still fine. Like you would
29:16
Speaker 3: not think if you saw her in the street that
29:18
Speaker 3: she's had all this going on because she's happy. Yeah.
29:23
Speaker 2: Yeah, I mean, that's that's so good to hear, really
29:27
Speaker 2: good to hear how resilient, how resilient she is, which
29:32
Speaker 2: is fantastic. There is something you said right at the beginning,
29:38
Speaker 2: because this isn't your first interview that you've done. You've
29:43
Speaker 2: also done some radio talk a little bit about that.
29:48
Speaker 3: So I wanted to give back as much as I could,
29:53
Speaker 3: because if to be honest with you, if I could
29:57
Speaker 3: give so much to like her doctor, she who saved
30:00
Speaker 3: her life because if she didn't have the stoma, they
30:03
Speaker 3: told me it would kill her. Basically she was very
30:05
Speaker 3: very poorly. Her stomach was so swollen, and she was
30:09
Speaker 3: at the point that sepsis was a thing and whatnot.
30:12
Speaker 3: It was quite worrying, very worrying times, and very uncertain.
30:17
Speaker 3: And I would do so much for them, guys, because
30:22
Speaker 3: like I could have like had no life of it
30:25
Speaker 3: as basically if it wasn't for those people, and like
30:30
Speaker 3: just Ronald McDonald in general, like they've been phenomenal. Every
30:34
Speaker 3: time we go up there, they send me a care
30:36
Speaker 3: package just to take care of myself, because as a mum,
30:39
Speaker 3: you just go into survival mode when you're baby sick,
30:43
Speaker 3: and I just I don't function, I don't take care
30:47
Speaker 3: of myself. I am literally nurse nat because she instantly
30:50
Speaker 3: goes into an isolation room and they don't want to
30:53
Speaker 3: make too much contact with her. Because she could catch
30:55
Speaker 3: other stuff, so so sceptible. And so you know this
31:00
Speaker 3: week recently, since Friday, I've been changing her hourly because
31:04
Speaker 3: she's been going hourly more than that, and that's like
31:09
Speaker 3: twenty four hours round o'clock. Jordan so happened to be away,
31:13
Speaker 3: so it was literally just me on my Jack Todd.
31:15
Speaker 3: But every time I go up there, they always take
31:18
Speaker 3: good care of me and they always like, are you eating?
31:20
Speaker 3: Are you drinking? That saysme, Sorry, if you can hear
31:24
Speaker 3: you in the palic ground, she's kicking off. It looks
31:28
Speaker 3: like she just tried to get up the stairs and
31:29
Speaker 3: then Jordan's just caught her and then took house. Sorry,
31:35
Speaker 3: but yeah, So you know, they've always done so much
31:39
Speaker 3: for me, So I started doing hairdressing. So I've always
31:43
Speaker 3: had high corporate jobs. I've always done quite well for myself.
31:48
Speaker 3: But when I had asme, it was quite clear that
31:51
Speaker 3: I wouldn't be returning that to work because I couldn't
31:53
Speaker 3: be reliable. As soon as she goes into hospital, I
31:58
Speaker 3: don't know how long we're going to be in there
31:59
Speaker 3: for could be in there for a day or it
32:01
Speaker 3: could be weeks, and I didn't want to commit so
32:04
Speaker 3: I started doing hairdressing and I said to them in
32:07
Speaker 3: my interview for the college, which is so weird going
32:09
Speaker 3: back to college at my age. By the way, it
32:12
Speaker 3: is good, but at the same time I was an
32:14
Speaker 3: old girl in there. It was. I said to them,
32:19
Speaker 3: I want to do a fundraiser and raise money and
32:21
Speaker 3: take care of mums like myself that just don't take
32:25
Speaker 3: care of themselves, so when they're in hospital, I'd like
32:27
Speaker 3: to do haircuts and raise money for Ronald McDonald's. So
32:32
Speaker 3: my college shooter Iris has a partner who works for
32:36
Speaker 3: Ashdown Radio, which is a local radio station. He's actually
32:40
Speaker 3: got quite a big following. A lot of people do
32:42
Speaker 3: listen to him. He's very good. He used to work
32:44
Speaker 3: for ARROWFM years ago, so he's known already. Very energetic lad.
32:51
Speaker 3: By the way, I don't know how he's buzzing without
32:54
Speaker 3: a coffee in the morning, but he's always buzz it.
32:57
Speaker 3: So yeah, he's absolutely phenomenal. He actually raises money for Wilfrid's.
33:04
Speaker 3: He's got autoimmune disease and they put him in at
33:09
Speaker 3: first before he didn't get diagnosed. He was basically put
33:13
Speaker 3: into St Wilfred's hospice and was very very sick and
33:17
Speaker 3: they said it would never walk again or things like that.
33:20
Speaker 3: He was very ill. So he's raised a lot of
33:22
Speaker 3: money for them, and when he heard Esme's story, he
33:25
Speaker 3: wanted to raise money for her. So what turned out
33:28
Speaker 3: to be something small, which was cuts for a cause,
33:30
Speaker 3: ended that the whole month of May we were doing haircuts,
33:35
Speaker 3: all money going to Ron McDonald and then we did
33:39
Speaker 3: a pub quiz. We did a radio fon which Ryan did,
33:43
Speaker 3: which was twenty seven hours on the radio station and
33:47
Speaker 3: we just raised just under four k. I've got another
33:51
Speaker 3: pub quiz to do, which is in the Robin Hood
33:54
Speaker 3: in Equalsham amazing part, great burgers. They do such good
33:58
Speaker 3: food there. And his son actually at the moment is
34:02
Speaker 3: going through a diagnosis of crones, so he actually was
34:06
Speaker 3: asking me about Esme stuff because they're not too far
34:10
Speaker 3: part in terms of like what you can and can't eat.
34:13
Speaker 3: There's still affect in the gar and his son is
34:15
Speaker 3: a teenager who just eats whatever then pays for it afterwards.
34:22
Speaker 3: But he was like, what do you do with z.
34:24
Speaker 3: Obviously I've got a little bit of leeway here because
34:28
Speaker 3: she's younger and I can sort of mold her to
34:31
Speaker 3: like this is good for you have some fish and
34:33
Speaker 3: things like that. But yeah, he's part of Ronald McDonald
34:37
Speaker 3: and Brighton and he gets stays there all the time.
34:39
Speaker 3: So we ended up doing these massive interviews which I
34:43
Speaker 3: did give you a shout out, I don't want it,
34:49
Speaker 3: and yeah it was. Yeah, it's just blown up, really
34:54
Speaker 3: blown up, and now is becoming a yearly thing where
34:58
Speaker 3: I do it yearly more. Yeah, so it's it seemed
35:04
Speaker 3: to be like a little bit of an ambassador. But
35:06
Speaker 3: I would like, ideally and if I do do this
35:10
Speaker 3: that one day that esme might actually speak out and
35:13
Speaker 3: help others that I do it from a parent's point
35:16
Speaker 3: of view, to help parents, because you know, it's tough.
35:24
Speaker 3: No one wants their baby going through any of this
35:26
Speaker 3: sort of stuff, and no one wants to see their
35:28
Speaker 3: kid constantly going in and out of hospital being poked
35:31
Speaker 3: and podded told that they've got to have certain room
35:34
Speaker 3: out procedures. Nobody wants that. Like I never thought i'd
35:37
Speaker 3: see inside a children's ward like or being a children's hospital.
35:41
Speaker 3: It's a whole different world. And when you were a
35:46
Speaker 3: first time mum, because as May was my first, she's
35:49
Speaker 3: got older siblings and her half brothers love my boys still,
35:52
Speaker 3: but yeah, my first time having a baby, and she
35:58
Speaker 3: has really given me some like PTSD over it all.
36:05
Speaker 3: But I didn't really have anyone. I mean, obviously I
36:09
Speaker 3: watched your podcasts a lot, and they did give me
36:11
Speaker 3: a little bit of like like they put me at
36:14
Speaker 3: ease because oh, you're someone that's lived with it your
36:18
Speaker 3: whole life, and all I kept thinking was, like, there's
36:21
Speaker 3: most life going to be like, so it'd be nice,
36:26
Speaker 3: Like obviously there are different situations, like everyone's got different cases,
36:30
Speaker 3: everyone's got different stories. I've learned that no two bodies
36:33
Speaker 3: are the same when it comes to this, and you're
36:36
Speaker 3: literally finding your feet all the time, what they can
36:39
Speaker 3: and can't do with certain things, how they react to
36:42
Speaker 3: certain things. And I've learned so much about bowels and
36:47
Speaker 3: poop and like I'm now like a nurse, so I
36:50
Speaker 3: often say like type seven or type six or like
36:53
Speaker 3: I know all the types of the Bristol poop chart.
36:57
Speaker 3: But it is is. But it's just like it's a
37:04
Speaker 3: whole different world that I'd never understood when I first
37:07
Speaker 3: come into it. And now I should probably get a
37:10
Speaker 3: doctor's wage at this point. But yeah, I'd like to
37:15
Speaker 3: help parents, but I would like esme eventually to help
37:18
Speaker 3: people that are in her situation or talk about it
37:22
Speaker 3: like you do. Maybe come in a visit for itself.
37:26
Speaker 2: Yeah, I mean, if I'm still doing this podcast in
37:29
Speaker 2: many years time, which we'll see, can I, then yes,
37:35
Speaker 2: she's absolutely welcome to come on, absolutely welcome.
37:39
Speaker 3: It did help me massively because honestly, it's it's you're like, literally,
37:45
Speaker 3: it's like opening Pandora's box, because yeah, I was taken
37:50
Speaker 3: back by it all and never heard of it At
37:52
Speaker 3: hirsh Bruns. I kept calling it hashburgers for a while
37:55
Speaker 3: and actually funny, funny enough side of Ryan from Ashdown Radio,
38:01
Speaker 3: and it made me laugh because me in order said
38:03
Speaker 3: that for ages and then our doctor was like, no,
38:06
Speaker 3: it's hirsh Bruns and it's not had Burgers. I was like,
38:12
Speaker 3: what is hash buckets?
38:15
Speaker 2: You know?
38:17
Speaker 3: But yeah, we've done so much already and I just
38:19
Speaker 3: would like, I would love to help. That's why I
38:21
Speaker 3: want to raise awareness, but also just like beat someone
38:25
Speaker 3: that speaks out eventually. It would be nice actually that
38:29
Speaker 3: it would be nice to see that male parents talk
38:33
Speaker 3: out about it, because my partner finds it really hard
38:36
Speaker 3: to talk about it, and so it would be nice
38:39
Speaker 3: actually from a male's perspective, how they support their partner
38:44
Speaker 3: and their child that's going through it, it would be nice.
38:49
Speaker 3: I don't know you might find someone that will, but.
38:53
Speaker 2: Yeah, that is that is one of my one of
38:58
Speaker 2: my aims in the future. I mean, I have had
39:01
Speaker 2: some really really good dads who come on really really good,
39:06
Speaker 2: but those episodes are few and far between, and I think,
39:11
Speaker 2: you know, for probably reasons that people that people know already,
39:15
Speaker 2: you know, and a lot of cases, the moms are
39:18
Speaker 2: they're with their child and so they see everything and
39:24
Speaker 2: probably they're able to say more because they're there and
39:28
Speaker 2: see everything. But like you said, you know, if the
39:32
Speaker 2: dad's at home taking care of you know, everything else home. Likewise,
39:38
Speaker 2: that is a story to tell in itself.
39:41
Speaker 3: It is when as May had her stemer put in
39:45
Speaker 3: Jordan had to work paternity pays like two weeks. He
39:50
Speaker 3: wanted to take it after she should come home so
39:53
Speaker 3: he could support us by and I don't know how
39:58
Speaker 3: he managed. I know that he probably really did struggle
40:01
Speaker 3: that day because it was a surgery that obviously practically
40:05
Speaker 3: saved her. She was very, very sick, but I said,
40:09
Speaker 3: she went down to like four pounds and she didn't
40:13
Speaker 3: eat for like eight days. They were just pumping heir
40:15
Speaker 3: of TPM and yeah, like she was so tiny, she
40:22
Speaker 3: was like a bag of bones. Bless her heart by
40:24
Speaker 3: that point. But he was at work. He couldn't get
40:30
Speaker 3: it off. And I have actually tried to start pushing
40:34
Speaker 3: for like men to actually have longer, like I think
40:39
Speaker 3: they should have like a year at least, because I
40:42
Speaker 3: don't think it's fair when you've got a new child,
40:45
Speaker 3: like as the amount of times that I've got to
40:48
Speaker 3: go to appointments, the amount of treatments We've had to
40:50
Speaker 3: go through, a lot of it I've had to do
40:52
Speaker 3: by myself. He's had to support me through the phone
40:56
Speaker 3: because that work. But I mean he's now taken quite
41:01
Speaker 3: a leap. He's gone self employed, which is amazing, and
41:04
Speaker 3: he's started his own company just so that he can
41:08
Speaker 3: work around us. And then obviously our do hairdressing in
41:13
Speaker 3: the evenings and stuff like with clients and mobile hairdressing,
41:17
Speaker 3: so I work for myself as well. Hasn't fully taken
41:21
Speaker 3: off yet because obviously I've just found out I'm pregnant again,
41:23
Speaker 3: so I just don't know what I'm doing with my
41:24
Speaker 3: knife at this point, but it's like all of it's
41:30
Speaker 3: to work around actually having a medical child, which is
41:34
Speaker 3: something we just never anticipated that at all. You always
41:39
Speaker 3: think they're going to be born healthy. You always assume
41:41
Speaker 3: that you're going to be in the hospital for two days.
41:43
Speaker 3: Like I remember, Jordan, you know, I packed for two
41:48
Speaker 3: days for the hospital, and then Jordan had to pack
41:51
Speaker 3: my clothes, which would never ask him to do again
41:53
Speaker 3: because it was the worst decision because we were renovating
41:56
Speaker 3: our house at the time and all he'd seen me
41:58
Speaker 3: in was painting and decoration clothes. So guess what he packed.
42:04
Speaker 3: And he was like, well, you always wear these because
42:05
Speaker 3: these are comfortable. Like, no, Jordan, can you not see
42:08
Speaker 3: the paint. I'm going up to an ICU ward looking
42:12
Speaker 3: like I'm a builder because that's what you've given me,
42:19
Speaker 3: because that's what he saw me wear. So it's great.
42:25
Speaker 3: So I think this time round, I am going to
42:27
Speaker 3: pack from old days, just to be yourself. Yeah, just
42:31
Speaker 3: in case, and yeah, just going from there, because if
42:36
Speaker 3: Jordan packs for me, it's a disaster. He thought it
42:43
Speaker 3: was funny.
42:47
Speaker 2: Ah, that's brilliant.
42:50
Speaker 3: My mom thought it was hilarious as well, and the
42:52
Speaker 3: would mind. But all the decorating clothes that I was
42:55
Speaker 3: wearing was his old work clothes. So there is old
43:01
Speaker 3: joggers and his old tops. So I'm going in there
43:04
Speaker 3: with these massive baggy clothes into an ITU unit and
43:10
Speaker 3: the nurses and the doctors are like, are you doing
43:12
Speaker 3: maintenance or are you here to steal child?
43:16
Speaker 2: Like?
43:19
Speaker 3: Ah, luckily they were clean. I would like I like
43:21
Speaker 3: to put that out, but it was a day work clean.
43:24
Speaker 3: It was just a yeah, I already looked a mess.
43:27
Speaker 3: Now I'm highlighted as a builder.
43:29
Speaker 5: So oh dearie me.
43:35
Speaker 6: Ah dear.
43:37
Speaker 5: So if we look to the future, I know you
43:41
Speaker 5: talked a little bit about what you think, excuse me,
43:46
Speaker 5: what might happen a little bit down the line, but
43:50
Speaker 5: what you hope to see sort of near future for fairs.
43:55
Speaker 3: I mean, she does so well already with like what
43:58
Speaker 3: she knows how body. I would like that to continue
44:00
Speaker 3: because when they get older, they get so stubborn. But
44:04
Speaker 3: I would like her to know her own body really
44:07
Speaker 3: well so that she could actually express and tell me
44:12
Speaker 3: what's going on. Because at the moment, like I said,
44:14
Speaker 3: she talks, but it's on her terms. Usually when she's
44:17
Speaker 3: supposed to go to sleep and then she starts nattering
44:20
Speaker 3: away and I'm like, this is not cool. You don't
44:22
Speaker 3: talk all day and you just say daddah and then
44:24
Speaker 3: you start. But ideally I would like her to be
44:29
Speaker 3: able to tell me, Mum, I'm feeling this way, or
44:35
Speaker 3: you know, I'm feeling this way. I think it's because
44:37
Speaker 3: of this, and sort of navigate her own body, and
44:42
Speaker 3: I would like it to be like I would love
44:45
Speaker 3: the hospital stays to be less, or going into hospitals
44:48
Speaker 3: a lot less, obviously, because we get some months that
44:52
Speaker 3: we don't go in and then we get some months
44:54
Speaker 3: that we're going in there, like literally every week, and
44:56
Speaker 3: it is it's a lot. Or I'm phoning the hospital
44:59
Speaker 3: quite regularly. But it would just be nice to see
45:04
Speaker 3: like her having a normal life because at the moment,
45:07
Speaker 3: she doesn't go to nursery because she literally just siphons
45:10
Speaker 3: any bug within spitting distance or anything, and then it
45:15
Speaker 3: affects it affects her gut. So we don't put her
45:18
Speaker 3: a nursery because I don't see the point of paying
45:20
Speaker 3: for a nursery. She's just not going to be there
45:21
Speaker 3: half the time. But it would be nice for her
45:24
Speaker 3: to actually just be like a normal kid and mean
45:28
Speaker 3: not to be such an anxious mum because I worry
45:32
Speaker 3: and literally about everything. Like we didn't go on holiday
45:37
Speaker 3: recently because the lost time we went on holiday, she
45:39
Speaker 3: got two bouts of the coli and that's dangerous and
45:44
Speaker 3: it scared the hell out of me, and then we
45:46
Speaker 3: weren't anywhere near her hospital. So like now, I'm like,
45:52
Speaker 3: if we go away again, she gets sick. So it
45:55
Speaker 3: would be nice to be able to relax and know
45:58
Speaker 3: that she's got this her own much, she knows her
46:01
Speaker 3: own body, and that she could just like have fun
46:05
Speaker 3: and live her life. That's what I want her to
46:07
Speaker 3: be happy more than anything. I know she is happy,
46:10
Speaker 3: but I want her to be happy without struggling, like
46:12
Speaker 3: she struggles every day, but you just like you wouldn't
46:15
Speaker 3: know she would. That would be nice to me. It
46:20
Speaker 3: means a lot, like just to have her just be
46:23
Speaker 3: a normal, normal kid, Like, yeah, I do worry about
46:30
Speaker 3: incontinence a little bit later down and I, like I said,
46:33
Speaker 3: she does go on the potty, but when she has
46:35
Speaker 3: a flare up, she can't control her. Sometimes she doesn't
46:39
Speaker 3: even realize she's going and that breaks me a little
46:42
Speaker 3: bit because I'm like, you're so confident, you're you're this
46:46
Speaker 3: independent little girl, and you know, I can see you
46:50
Speaker 3: still needing pull ups at some points in your life,
46:54
Speaker 3: which I have come to terms with is going to
46:57
Speaker 3: happen sometimes when she has flare ups, it's not can't
47:00
Speaker 3: unhear it. And I do worry about secondary schools. Kids
47:04
Speaker 3: could be so mean. And I know that we're in
47:06
Speaker 3: a day and age where they do accept a lot
47:08
Speaker 3: more nowadays and things like that and certain disabilities and things,
47:13
Speaker 3: but I still can't help but think, like going to
47:16
Speaker 3: the toilet or a poo for a girl is so
47:18
Speaker 3: taboo and kids pick on it. And I want her
47:22
Speaker 3: to be comfortable in her own skin and be like
47:25
Speaker 3: I need to I need to go Like I want
47:28
Speaker 3: her to be like this is normal, this is okay.
47:31
Speaker 3: This it might not be like everyone's normal, but her normal,
47:34
Speaker 3: and be confident in herself and be like this is okay.
47:37
Speaker 3: I'm going to do this. I mean, we've got a
47:40
Speaker 3: friend that's got like crones and she she actually has
47:43
Speaker 3: timed her now her medication at a certain time of day,
47:46
Speaker 3: so she takes it. She goes to toilet at a
47:48
Speaker 3: certain time of day so that she doesn't embarrass her.
47:51
Speaker 3: But she said it's taken her. She's like thirty on
47:53
Speaker 3: now and it's taken her all this time to sort
47:56
Speaker 3: of train her body like that. And it'd be nice
48:00
Speaker 3: that Esmee knows her own body in that way that
48:03
Speaker 3: she can manage it. But yeah, I just that's that's
48:07
Speaker 3: my hope for her, less hospital stays and things like that.
48:10
Speaker 3: But I guess it all comes with time, and we're
48:14
Speaker 3: still trying to navigate it. We're still trying to find
48:17
Speaker 3: our way, and I love her to speak out. I
48:22
Speaker 3: don't know if she will, well, guess time will tell.
48:25
Speaker 3: Women do find it a lot easier, as you said.
48:30
Speaker 3: But yeah, it would be nice that I could just relax,
48:33
Speaker 3: because when you're a medical mum, you don't. I'm so
48:37
Speaker 3: guarded of her. If anyone makes her cry a specta
48:39
Speaker 3: god like, I will go crazy. She's put me through
48:46
Speaker 3: too much. You cannot make her sad.
48:49
Speaker 2: Absolutely wholeheartedly agree, but no, thank you so so much
48:54
Speaker 2: for coming on. It's been so so good to chat
48:57
Speaker 2: to you, and obviously wish you, as Jordan and the
49:02
Speaker 2: pregnancy all the very very best for the feature.
49:08
Speaker 3: Yeah, no, thanks and thank you for listening to me
49:10
Speaker 3: because I do ramble on.
49:12
Speaker 6: No, Thank you so much for coming on. Thank you
49:17
Speaker 6: for listening and being part of this growing community. If
49:20
Speaker 6: you have enjoyed the episode, don't forget to subscribe, leave
49:23
Speaker 6: a review, and share it with someone who might need it.
49:26
Speaker 6: You can connect with us on social media via Instagram, Facebook,
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Speaker 6: and TikTok under the name Tom's Hirshprung's Podcast.
49:34
Speaker 1: See you next week.