Erin - Little.Lulu.Love #3

[influencerstalk]

For those playing along at home

What an evil fkn bitch!
I have never not brought my children on holiday for me. Her excuses are disgusting ! It’s hotter in Sydney as it will be 40C the next couple of days
All parents at times divide and conquer if you have the luxury of having a 2 parent family
I fkn hate her

 

[dulcielaroux]

The email I sent EAA was forwarded to the CEO and I had a response from her directly. I don’t want to share too much about it because I don’t want Erin to read here and decide that the emails to EAA are some kind of targeted ‘troll campaign from a hate forum’ and be able to delegitimise our very genuine and valid concerns. But the response I got suggested they intend to take some kind of action. We will have to wait and see whether that goes beyond a conversation with Erin into anything significant.

 

[EggCarton]

Each time I think she can't possibly be more selfish, idiotic and actually stupid, she proves me wrong. I honestly don't understand how she can equate the neurologist wanting an updated EEG (which is, yes, annoying, but in the grand scheme of medical testing pretty non-invasive - I mean, it's not like they're wanting a lumbar puncture or bone marrow aspirate!) with them treating Lu like a guinea pig? Erin, they want data to inform treatment options FOR LUELLA. Just because you have given up on your daughter doesn't mean the medical professionals have.

She says that every EEG is worse, and nothing ever changes --- can someone smarter than me please make that make sense!? Poor, sweet Luella. He mum basically cannot be bothered any more. First she messes up Lu's only real chance of ever experiencing some seizure freedom by kicking the can down the road until surgery is no longer an option....and now she's basically refusing to do anything more because 'nothing will work, because nothing has ever worked, doctors don't know anything, they are treating Lu like a guinea pig' etc etc etc.

Treating Lu like a guinea pig would look like doing invasive testing that will not benefit Luella, but will benefit the greater good. The results of a simple video EEG will only be of any benefit to Lu. I don't know, I guess I'm just stuck on where this guinea pig nonsense came from? Like someone mentioned above, either the doctors do nothing, and she'll rage about how they have given up on Lu and don't care and are punishing Erin. Or the doctors squeeze Lu in and order a barrage of tests to hopefully get some new information that will result in new treatment options to improve Lu's quality of life, and Erin accuses them of treating Lu like a guinea pig. Like, what? I just can't make sense of this woman's brain.

 

[Kalesmoothie]

I think people would be more sympathetic to their need for “respite” when erin didn’t have daily fucking respite from Luella.
She chose that holiday specifically to exclude her. And she’s teaching Tom to do the same. Life’s only good when Luella isn’t around!!!
Absolutely heart breaking.
And those people in her comment section can fuck off too. Enabling cunts
The real world is parents who have NO help, NO carers, NO grandparents, who’s kids require more care and more support than luella and yet princess erin has her daily respite and now her holidays.
I bet she told people on holiday it was just the 3 of them. Emulating happy families without their first born child.
Just admit you hate your daughter and wish she wasn’t here. Spare us with the i’m such a thoughtful burdened mother bullshit.
She does the bare minimum. Can’t even attend her therapies with her. Pathetic.
And this … this is an advocate?? for epilepsy action australia?!?! Wow.
No wonder it has no friends.

 

[jumble]

It's just in such stark contrast to the friends she used to have. When you consider the lengths rach and jonny went to to ensure their disabled daughter was able to experience so many things in her life, even if it took a bit more effort from them.

And how Erin herself has said Luella is at significant risk of SUDEP... and she is still resistant to making sure her daughters life is full of experiences

Yes this is what I don’t understand! She basically leaves Lulu to spend her days at home and at Napa. They do no special experiences with her at all. They have the means to do lots of things with her too.
Rachael and Johnny invested to much time and energy into making Mackenzie’s short life full of wonder and adventure, it’s no wonder they ditched Erin.
---

Yep and going to Europe this year to run a marathon
Which I am sure is a solo trip. At the very least Lu won’t be there if they can’t even take her to the GC ffs

The kicker? The marathon is on Lulu’s birthday. So she’ll miss spending her daughter’s birthday with her.

 

[dulcielaroux]

Just wanted to jump in and say that I’ve spoken to someone with insider info on that core group, and Rachael and the others were always told that the surgery would definitely happen. It seems that this level of wealth is semi new because of Dave’s job, there was absolutely no way they would have done the GFM if they knew the wealth that they had. Erin is a master manipulator.

 

[No just No]

There’s just something so desperately sad about how Erin approaches everything to do with Lu
Like she’s trying to “fix” something rather than just celebrating the child she has in front of her
By all means continue to explore options to help better your child’s life but I can’t help but feel that it’s really driven by how it might improve Erin’s life rather than Lus….

 

[mrsnarky]

I don’t many mums who have free days . Most I know, including myself use daycare to work and not to do life admin and running. She’s such an entitled POS.

 

[Kalesmoothie]

Don’t forget she’s complaining that it’s 2024 and no-one has invented a way for them to have a camera recorded eeg at home.

Now Erin, I’m no neurologist but the reason you wouldn’t be able to do those camera recorded eeg’s at home would be because there are so many inconsistencies in the environment ect

Haha. Another proof of how out of touch Erin is. There are “at home testing” continuous recording EEG with video recording available. We did it not even 6 months ago. You head in, get kitted up, take the equipment home, and stay home for the duration (1/3/7 days). Lol. I’m not posting the name on purpose, she needs to look into it. Just more proof she does not listen to their neuros. Ours organised it for us.
Such an advocate and expert Erin.
---
And another thought. No one likes doing EEGs. our kids hate them. We hate them. they’re horrid. But the information they can reveal is crucial. And there may be seizures happening, seems like she’s experiencing tonics at the moment? So it’s important to capture where they’re originating from. It’s also crucial to assess for new conditions such as DEESWAS which can speed up cognitive decline and is important to know so they can attempt to treat that set of particular seizures. I don’t recall her ever having the 3 day IV steroid treatment in the past? They haven’t tried everything. Treatments etc are constantly evolving too. It’s frustrating she is considering just saying no and potentially letting her suffer
Seizures aren’t just tonic clonic (grand mal) seizures. And she says about her being a guinea pig… to who? It’s all relevant, especially if there’s regressions. She just can’t be bothered. Which i do get. It’s shit. But you simply have to. Because not having all the information leaves you helpless and stuck in the same place when there MAY be new information. I feel so sad for Lu that she’s suffering at the moment

 

[Julesanne]

My child is autistic and is in mainstream, but in kindy he went to an educational support school to gain extra skills to help with the mainstream environment. We met some amazing families who are our good friends, our kids go to each other's birthday parties and we often have play dates. Sure they play side by side but they all look forward to it. We all vent to each other, celebrate our kiddos' successes and share advice and resources. Erin is missing out on an incredible community that Lu could introduce them to if they looked at a specialised school. Why she's pushing for mainstream, I don't know. Is it because it becomes another system to be outraged with when they can't accommodate her? A special school would know how to teach her and to play on her strengths. Why not give your child the chance to be her best self in the right environment? It's sad.

 

[beebop88]

My nephew is in year 10 and one of his best friends throughout primary school was non verbal, autistic and developmentally delayed. He still goes to his birthday parties to this day and will go to his house to hang out. Luella can and will make friends, Erin. If you allow her to.

 

[dulcielaroux]

My jaw is on the floor. This is unbelievable

 

[influencerstalk]

We went on a family holiday with my 4 year old son. It was a nightmare we couldn't keep him contained. We spent the whole time chasing him. Even when chasing him he would duck behind a caravan and we would loose him. He doesn't answer to his name when we call him. He has no safety awareness about cars despite warning him a million times. After a week we'd had enough so we dropped him back at my mother in law's for the second week. I don't feel guilty for doing this. It was actually great being able to spend quality time with our other children. I don't judge Erin for wanting some time with her son.

But does she want time with her Son ? Seemed like it was a lot of alone time for her. He is only one and going to daycare when Erin doesn’t work. I think that was just an excuse to leave Lu at home. It’s all about Erin - always

 

[influencerstalk]

Also what 1 or 2 year old NEEDS a holiday !
Imagine how much worse this will get the older he gets and how if he is anything like Erin will be embarrassed to have Lu with him !

 

[jumble]

Man oh man… fancy your child with severe disabilities taking her first steps, you missing them, and then the next day deciding not to go to therapy with her to potentially see her take more steps.
I found her reaction to Lulu walking so fake as well.

 

[Swamp Life]

Sounds like she did more work with ringing around etc to get a marathon place than she has ever done to sort out Lu’s schooling. Makes me really mad.

 

[robbolife]

Oh look a cis het able bodied wealthy privileged white woman gets chosen to speak on/represent something that she has no business representing. I’m shook. There would have been a huge number of better options to choose to be on this fucking directors board - parents who actually have humanity for their disabled child - and this witch and her limp hubby get chosen? I guess money talks right?? Not that she’s donating any of her personal money to EA, it’s all going towards their ableist house build.

 

[EveryDaysASoulDay]

A seizure does not “ruin” anything. They are an unavoidable medical occurrence that, unfortunately for Lu, are regular enough that they must simply be accommodated and navigated, expected as part of her day-to-day routine. So if a seizure can “ruin” Easter for Erin, then does that mean that her constant seizures have “ruined” Erin’s whole life? Her choice of words are quite the window into her psyche.

Please know, this is not me diminishing the seizures or negating her condition, this is me not at all understanding why Erin has not yet accepted their family’s reality and learned how to keep life moving around the seizures without skipping a beat - for Lulu’s sake. Erin not seeking out mental health care to grapple with her obvious resentment is such an egregious act against poor Lulu.

 

[RawlingsBlue]

I’ve written to epilepsy advocacy Australia see what they come back with.

 

[Kalesmoothie]

First- Christmas is in less than 2 weeks, and you just thought about your daughter’s gifts?
Second- she’s YOUR DAUGHTER. What does she like? What does she enjoy? I don’t think you need a disabled kids gift guide, because, mrs erin the “advocate”, every disabled child likes different things and has different abilities.
I can’t with her. I bet Tommyyyy has a cupboard full of gifts ready to go.