Erin - Little.Lulu.Love

[Maisiemouse]

 

[messiijessii]

I agree with a lot of what you've said except the MRI under GA part. In Erin's defence I'm almost certain she would struggle to source this. There is a big difference in putting a child under GA VS an adult under GA. Also, even if she got an MRI it will not speed up the process. They are still waiting in the cue for her turn and the MRI merely provides additional information on what they are dealing with before they go in there.

I really feel like deflecting is just part of Erin's coping mechanisms. She's just trying to get control over a situation she has no control in.

Yes, you are absolutely right- I guess in my rage I couldn’t articulate that- but she keeps going on and on about the MRI. Go and fucking get one then. Literally this week. And yes, fair enough, a child is not as easy to sedate but I am sure she could secure a private appointment before Christmas for one and have it faxed to the neuro.
My anger comes I guess from seeing that poor child suffer. I just wish Erin would say “I fucked up, I wish we had the surgery earlier, now we have to wait while Luella deteriorates and suffers” Not blame some stupid MRI on it all, and the poor overworked public health staff that advised her to do it over a year ago.

 

[Maisiemouse]

I think her staying she had to sit with her private’s exposed for 1.5 hours was surely an exaggeration. Like surely she was sitting on a toilet or in a cubicle with a curtain around it?

Surely she’s give it a go, no luck try again 30 mins later, not sit there the entire time?

If that’s the way she chose to try to get urine from Lu then that’s poor decision making on her part.
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*puts armchair psychologist hat on*

So I reckon she feels totally out of control in her life, not being able to help Luella. She also has a lot of anger at the situation and guilt at herself for not getting the surgery or more broadly being able to help her little girl .

This comes out with hyper focus and control at the things she perceives she can control, like these admissions and how the staff treat Lu. It’s sadly also an outlet for her rage. I am not sure if she’s getting therapy, but I really hope she is.

So trying to catch a urine...you actually do have to sit there with their legs spread basically just waiting for them to pee. If you try for 30 mins and then put the nappy back on, chances are they will pee in the nappy. She would have been in an isolated room is my guess, they wouldn't have her sitting out in front of everyone with covid.

I'm assuming the dr said it was important to rule out a UTI. They don't like to do in out catheters in that age group because it is distressing for the child. Hence why wanting to get a clean catch.

My guess is after 90 mins Erin said f*** it, if this is all we are doing for her then I'm out of here. She would have self discharged but I'm sure the staff were agreeable to her leaving because she makes their life hell, and Lu wasn't seriously unwell.

When they came back it was probably documented about all the previous attempts, Erin probably said there is no freaking way she's trying to catch a urine again, so an in out catheter was agreed upon.

It's normal practice if you get the catheter in the wrong hole on a female to leave it there, to make sure the next catheter goes in the right hole. Kids anatomy is tiny. I'm thinking the nurse got it with the 2nd catheter.
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I actually can't stand all the people blowing smoke up Erin saying heads need to roll, boycott the hospital blah blah. This is the most subjective account of events from someone who ISNT medical.

Yes they should have agreed to bloods and fluids when she re-presented. But how ballsy is it to basically tar the entire hospital to 22k people WHILST your child is still being treated. I have no doubt that Erin making all these formal and social complaints has impacted the care they receive. Nobody would want to go near them for fear of being ranted at or having a complaint made about them. Nobody would want to chat with her in case they said something she viewed as prejudice. Of course Lu would be getting cared for, but it would be basic levels of care because her mum is so painful.

 

[notgifted]

I can’t not post to this thread any longer, but I also can’t post what I honestly want to say about Erin, there is absolutely nothing nice I have to say, every single comment I have read on here is valid, accurate and so bloody sad, this bitch Erin does not have a caring or empathetic bone in her body to Luella and it’s so damn sad. She needs to be taken off her and given to a family who don’t think to her as a burden but a special gift. She needs the surget and thats all I can say, it upsets me and makes me so damn mad. 🥲

 

[MrsEyeroll]

For starters PUT THE BABY DOWN in a safe place and help Lu considering she's having a medical episode! How is this even a question? Does it suck having to choose? Of course it would but in what world does a babies sleep come before a toddler seizing?! Oh but how would she get sympathy if she wasn't asking these dumb ass questions making herself out to be a hero. I'm honestly at the point where I can't even hate follow. She literally makes me feel sick.

 

[EggCarton]

It’s just bizarre to me her complete inability to multitask. Like, even if Lu didn’t have epilepsy and and was typically developing, she’d be climbing and falling off the back of the couch, or spilling her glass of water all over the ipad or whatever other shenanigans 3yos get up to. What then? Set the baby down, deal with the most injured child/child most at risk of injury, then get back to the baby. I don’t really understand why she can’t grasp that THIS IS PARENTHOOD. This is what we ALL do, day in and day out. There’s no secret she isn’t privy to. This is just being a mum of more than one child.
I understand she feels like Tom shouldn’t be left to cry - it’s hard, but it’s also what every single mum of more than one child goes through in those first few months or bringing a new baby home. Your second child always is left to cry more than your first child ever was. It’s fine, it’s normal, you are only human. I just wish she’d prioritise Luella’s medical needs. At first I scoffed when some of you suggested maybe she wasn’t doing the surgery because she sort of hoped Luella would die from her epilepsy. Now….now I don’t think you’re too far off the truth. I feel like Erin would LOVE to ‘start over’ with perfect Tom and perfect baby girl in waiting, and then they could have the perfect boy/girl/dog that is the ideal that Erin thinks she deserves and is entitled to.

 

[Swamp Life]

It’s great they’ve been able to find a solution to shower Lu, it really is.
But does this mean all her stories last hospital visit were BS? She tried to say all the showers were kind of the built in/walled in showers and there was no where to even fit a shower chair. She said she’d checked the other bathrooms too and they were the same. Now she shows a fully open wet room, which we all suspected they would have had somewhere.

 

[moulindickehead]

And honestly, what awareness has been raised? That having a disabled child is a miserable experience filled with only negatives, and people with disabilities are a blight on lives of their families who deserved better and who can now never smile? Absolutely fuck off mate. Very sick of these Instagram people profiting off their children's personal medical information that should never have even been a topic for public consumption. Looking at you too, eyebrows.

P.S disabled people are fucking excellent and full of competence, and joy, and fun when you stop looking at them with ableism! (obvs directed at ERIN lol)

It's been mentioned before but I really don't understand how some of the friends Erin has made through insta (my life of love, heart of harper etc) manage to stay friends with her. These ladies have lost their babies and whilst it would be sooo incredibly challenging to have a child like Lu, surely it must feel like rubbing salt in the wound when all Erin does is complain about the burden Lu is on her life.
Also with her anti-vax stance and disdain for medical personnel/medication.

I agree. Rachel to this day clearly honours and respects Mackenzie so much with everything posted about her, everything is so positive. Mackenzie had so many wonderful experiences and never once was presumed not competent to enjoy them alongside her family/they were adapted for her enjoyment, even right up until she passed.

 

[sparklingtrac]

I mean, is Rachael lying, or is she just believing what her friend has shared with her? Which may well be that the doctors said they could wait.

Whatever I think about Erin, I truly believe (as I have said on here before) that Rachael was well intended with the GFM and perhaps simply worded it poorly. She always meant for it to go towards a carer or nurse, regardless of the surgery. I think at the time she said that she surprised Erin with it but had asked for consent before posting. I honestly don’t think she is lying about that.



I get that, and I’ve stated that I also struggle with the way she talks about Luella. I just think that some of the comments around her receiving help, whether intended that way or not, come across as if she should be expected to care for Lu on her own without a break. And I think we need to normalise needing help in motherhood even for mums of typical kids, so it bothers me. I don’t know if I’m expressing it properly but I guess I feel like because Erin is so negative and grating, it’s easy to sort of pile on her for doing things like going to Pilates, as if that’s selfish, but then that sends the message that mums should always be martyrs. When it’s not that she’s going to Pilates or lunch without Lu that’s the issue, or even Chrystal doing a lot of the care while Tommy is small, it’s that her thinking about Lu is really unhealthy and getting in the way of getting her what she needs (ie surgery). It’s that she needs to get over her ableism and also see that no one gets the exact dream of motherhood they imagined.

Also, for me some of the conversations around how much they earn etc are pure speculation. Which is fine, people are entitled to opinions about it, but I feel like ultimately it’s up to individuals to decide if they want to donate to them, and if those who have donated are happy to have done so, I don’t feel it’s a huge controversy.



Agree Erin’s comment is brittle. I don’t know why she can’t just say “apologies, we didn’t intend to cause confusion” rather than using the words “you misinterpreted”.

Yeah but she’s not really even getting a break at Pilates, is she? Because she’s going with Tom. Lunches with the girls and Tom is strapped to her chest. The way I see it she only gets a break from Luella. As a mother of two, one who is severely disabled with intractable epilepsy and many complications, I can say that getting a break from one child isn’t a break at all. But she seems to not want to care for Luella. That’s the issue I think everyone has with her. Not that she has hired help or that she goes to Pilates. It’s that she harps on about how terrible Luella’s epilepsy is for HER, and seems to be playing house almost with her baby. And this most recent post about how she doesn’t want to be that mother, and that comment about how she’ll always be that mother no matter how many typically developing children she has… eurgh. That bit really made me think she wants to have children to replace Luella.

 

[RawlingsBlue]

She always has to blame someone else or the hospital, Her family isn’t vaccinated against Covid… her and Dave were out at concerts, dinner and the epilepsy Australia event. All places where covid easily spreads…the most likely people to have infected Lu are Dave and Erin… Lu was sick w Covid, RSV etc before going into hospital. But she still is blaming the hospital for Lu having these viruses. She can’t be fucking serious !!

Exactly don’t get vaccinated to help protect your disabled daughter from contracting these viruses.

They galavant around the countryside and wonder why their daughter is constantly sick.

 

[MrsEyeroll]

Riiighhhhhttt Lu gave dad seizures for Father's day as if she had any control over what was happening to her. She's sick and fucked up in the head she needs serious help. I don't use mental health as an excuse for everything but it's very clear she needs psychiatric help.

 

[scrantonstrangler]

Is she really that clueless about ng tubes? Lu isn't starving, the food is going straight to where it needs to go, they're just cutting out the middle man of chewing and swallowing. If Lu has food aversions and refuses a lot of foods she's probably getting more from tube feedings than by eating orally anyway. When I had a g tube I had medications through mine as well, and rarely ate food by mouth. Luella can probably still eat if she wants to, but Erin is making it sound like she's receiving no nutritional value just because it's liquid.

 

[RawlingsBlue]

So dads having a break? And mum is taking the baby to lunch. While they both palm off their precious daughter to someone else. I feel so terribly sad for Lu that she is never included in things her mum does.

Tommy is definitely a replacement perfect child. What kind of psychological damage is going to happen to him throughout his childhood.

Poor Lu, I’m so sorry you are treated this way.

 

[jumble]

First time poster here and I created an account just to talk about Erin. I just cannot believe the lack of interest and emotional connection she seems to have with Lulu.
I don’t want this to come across the wrong way but for a while now I have felt that she has absolutely no intention of allowing Lulu to have the surgery and perhaps subconsciously has chosen to allow her disease to progress. She seems to have checked out of participating in her treatment options. She doesn’t take her to Napa, she plays around with her medications without doctor supervision. It’s very dangerous and I can’t understand why her family hasn’t intervened. Tom seems like her “second chance” at having the family she pictured having, and there doesn’t seem like a lot of crossover between her disappointing life with Lulu and her perfect life with Tom. It is all very confusing and alarming. I hope that someone intervenes soon before it is too late for Lulu and she is beyond medical help.

That’s how I have felt about her, but have never wanted to say it out loud to anyone.. like she is kind of maybe hoping the worst happens so the problem ‘goes away’. I know that’s awful, it’s fucking awful and I hate saying it, but I cannot shake that feeling. I would do anything to ease my child’s discomfort and pain, even if it meant scary surgery. She does nothing.

 

[EggCarton]

Agree, she should be in a room with her parents. Erin and husband are hideous.

Yup. I was giving her husband a pass, because….well, I don’t really know why. But he doesn’t deserve one. Sure, he’s not actively being a completely shit head online like Erin is, but he’s not stopping her, either. He’s not telling her, ‘Enough! Lu is our daughter, and we love her no matter what, she’s our baby girl and we are going to fight like hell to give her the best most beautiful life possible.’ He’s not getting her effective mental health attention - which I know you can’t exactly force on someone - but he could be giving her some very strong ultimatums, like, ‘You get serious about dealing with your PND, PNA/whatever, or I start making decisions unilaterally because you are unwell.’ He’s not checking her about the obvious disparity between her affection for Tom v Lu, for outsourcing all Lu’s care to Chrystal - it’s like, just because you have funds for a carer doesn’t mean you no longer have to care for your daughter. All that to say, her husband doesn’t get a pass from me any more.

 

[Pollie]

I love the posts from tattlers who are disabled or have loved ones who are disabled. Such lovely and kind words, I hope the world is full of people like you guys and not Erin.

 

[msmuse]

Oh my gosh that is the post that finally made me unfollow her. Her poor beautiful baby girl, utterly neglected. I followed from the start before Lulu became a great burden, donated money, todays post is just heartbreaking. I wish I could adopt her and give her what she needs

 

[EggCarton]

I bet she reads here. All her 'I love you more than I have words to express' nonsense suddenly. Oh yeah, Erin? If you do, treat her like it! Get her the medical treatment she needs. Spend TIME with her. DELIGHT in her more than just when her gorgeous face serves you on IG stories or when you're videoing her seizures for likes and $$$. Your daughter may not live a long life due to your neglect - if I were you I'd be making the most of every second you have with her. Give her the childhood she deserves. Playgroups and babycinos and parks, even if she's not capable of navigating it independently. You can still help her down the slide, she can play in the bark chips or bang on the things that make music, or spin the alphabet thingies or noughts and crosses thingies. Get fish and chips and sit on a picnic rug and let her eat. She deserves that. AND, shock horror, you can include Tom, too, because he is a newborn and will sleep in the carrier. What's your excuse?

 

[Kalesmoothie]

And you know what Erin.

I am that mother aswell.

But I would be “that mother” 1000x over then not have my baby girl..

She is stronger than anyone I know - and for thay I celebrate her everyday

Any win is a good day, the good days far out weigh the bad.

Yes it’s tough. But I wouldn’t change anything because otherwise I wouldn’t have my girl

Agreed! 1100+ days in and as hard as it is and the differences in disabilities, it’s still c.o.n.s.t.a.n.t but i wouldn’t give my boy back for the entire world. burnout is real here and i’m exhausted all of the time and yes it can be exceptionally difficult to just make it through a day. but Erin has more help than the majority of us. this is all deeper issues within herself that she needs to address. it really does feel like a countdown to her death and that’s fkn tragic i wish we could wrap our arms around Luella and show her that these kids aren’t burdens and are so loved and cherished

 

[Pollie]

Poor little Lulu, she looks so unwell. Be nice if mummy stop filming her.