little.lulu.love : Most liked Posts

Erin needs to accept her daughter has a lifelong disability.

Her issues aren’t with trying to find a solution. It’s deep seated ableism. She thought she was entitled to the white picket fence, 2.5 perfectly typical children, someone who would have avoided a disabled person when in public. There’s no way she’s ever engaged with others who live with significantly disabled children, and the fact her friends dropped her shows what a true vile piece of shit she is.

Erin. I’ve said it before but i’ll say it again. Life is a million times better when you accept and get comfortable with your reality.

There is no silver bullet. No one is coming to save us or cure our children. I promise there’s joy to be found when you stop fighting it.

There’s a quote around having a disabled child- “Why me? … Why not me?”. No one is so special that they were immune to having disabled kids. No one’s immune to catastrophic brain injuries or needing assistive technology. This is what it is.

Luella is clearly stable and doing very well. God forbid Erin finds glimmers in that and shifts her perspective to be behind her daughter for once.

Vile, evil woman.

The fact she constantly has someone to blame says clearly she’s the issue, not the ones she constantly rags out online. Pathetic behaviour.

Fucking Erin

“Just found out the neurologist is away, would’ve been nice to know that”

Well you were told you couldn’t get an appointment for 5 weeks, your fuck up. You would’ve seen him before he went away if you didn’t muck up the appointment..
The entitlement

God she finds anything to complain about ! She wouldn’t even pay for nappies as NDIS would be paying for them. Why doesn’t she buy some with her own money and donate some to the hospitals ?
She was saying she was still waiting on a 6 figure donation to come in for the epilepsy fundraiser the other night. Why doesn’t she do the same fundraising for the children’s hospitals that she keeps saying are in an appalling state.

Most people doing an overnight stay only would just shower before heading in and then she was going to be home in the morning shower then ?

and TV not working ? Oh wow one Night in hospital not even 24 hours I think you will survive Erin

My husband was months and months in hospital and hospice andI I never ranted once !Things weren’t perfect but the staff lovely and I brought in whatever he needed (with my 3 kids in tow )extra blankets, wipes, PJs, extra food, treats etc etc. I then worked w the hospice for the plans for the future development to outline what would help families like ours (my Husband was the onlyyoung Dad in there with young kids for the 3 months he was there ) to make the experience more comfortable and less terrifying.

Sorry went on a tangent…but her entitlement astounds me !

Nah Erin. Tom isn’t starting ‘pre school’. He’s starting daycare. It isn’t a dirty word

If Erin is saying they would have remained child free why the flying fuck did she have a second child. Makes absolutely no sense. To me just means she wishes she never have Lu and that is horrible. It’s not Lu’s fault. It’s not like she wakes up every day and decides to make Erin’s life hard. If she isn’t coping with two children and being spread thin then why would you have a second child. I just don’t get her at all

ps; I apologize for my earlier comments about wondering if Erin had done something.

Poor Lu. Also what’s with the ‘Tom needs a holiday too’ umm he’s 1, wtf. Plus anyone who has ever gone away with more than one young child knows that parents have to divide and conquer. It’s a fact of parenting. And finally how’s the privilege of it, being able to leave your disabled daughter behind to go on a beach getaway. I thought she didn’t have a village??

Wow. I haven't even gotten through all the Q&A stories, but I've seen enough.
Fancy accessibility not being your PRIMARY concern when doing a a new build! Like, WHAT THE ACTUAL!? This is MIND BOGGLING.

YAY for Chrystal! I can imagine there would have been no ability to do a slow extrication from working for Erin. She would have made the environment so intolerable and toxic. I want to believe that Chrystal could no longer tolerate Erin's blatant neglect of Lu's medical needs, and this was the only way she could take a stand in truly advocating for Lu. I don't know. To be honest I was actually expecting this - I'm surprised Chrystal lasted as long as she did. Their 'earth angel.' Ick.

As for the 'divide and conquer' approach to having 2+ kids, and the kids being on different schedules - WELCOME TO PARENTING!! This is what every single parent of 2+ kids experiences, even when neither child has a disability. The fact she thinks she is so hard done by that this is her reality shows how out of touch she is with ACTUAL reality. And how little experience she has with children in general to not know that this is completely normal.

We will likely never travel internationally as a family with our children, either. Our disabled child would suffer more than the benefit of us being overseas. But it doesn't mean our life is over. It means that we vacation domestically (we haven't vacationed since he was born, and he's 5, but we are so freaking obsessed with him that we don't even care). Does she not realise we have an enormous country with so much to see and do? & yep, sure, it's not Paris or Milan or whatever tropical destination might be top of your list, but my thoughts always go to something to the effect of, "I could have Paris, or I could have my son. And I will choose him every single day for the rest of eternity, because I LOVE HIM MORE THAN EVERYTHING ON THIS PLANET.' Don't get me wrong - if someone offered me a ticket to Paris today, I'd probably find a way to go, even if it meant mobilising every single resource I have to ensure my son is taken care of. & if I couldn't make that happen, then I wouldn't go. But my point is...he comes first. No matter what. He comes first in every facet of our life, because he's our beautiful, perfect son and we couldn't imagine our life without him. I literally say to my husband every night as we lay in bed, "God I love that kid. What did we ever do to deserve him?"

Everything we do is focused on his needs. We don't go to Taylor Swift etc, we go to sensory friendly events so that he can be his whole self and enjoy the experience too. I don't know. There's no point in me going on telling you all the things we do to make our life worth living in the context of also having a disabled child (& two typically developing ones). Because what we do honestly isn't anything that deserves claps or accolades. It's just the bare minimum that any parent should do. I literally cannot stand Erin.
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Oh. One more thing. The other thing that shocked me was her complete lack of considering an education for Lu. Lu is 4 in...October? So, 5 in October 2024, and then will need to start school in 2025 (in NSW we need to start school the year a child turns 6). School is not something you can just opt out of. There's of course the option to homeschool Lu, but we know Erin would never in a million trillion years opt to do that.

It's like, can she invest any actual thought in to raising her daughter and giving her the best life possible? This involves planning. My child is SLIGHTLY more independent than Lu (he can walk with assistance, can sign, can feed himself finger food etc) and it is a full time job advocating for him and putting things in place to ensure he has access to the things he needs to live his best life. This is on top of the full-time job it is actually caring for him (for which I lack a full time support worker or a night nurse, lol). Erin THINKS she is an advocating, but she has no idea what ACTUALLY advocating means or looks like. What it doesn't mean is doing disgusting voice overs on stupid reels saying things like 'She will never walk, talk, feed etc' like WHAT THE FUCK? She is the exact opposite of an advocate. She's like an anti-advocate.

We love you, Lu!
& Chrystal, we support you! If you're here, leave us a post with just emojis. You're welcome here!

santababy said:

Saddle up everyone! Here we fucking go

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Erin, I don’t know if you’ve fucking worked this out yet but no one wants to or ethically can open people’s brains up and go slicing willy nilly on the hope they stop electrical impulses occurring all over the brain. It is biologically impossible and reckless. Blasting people who know just a tad more about epilepsy than you do (but not everything - but medical science never claimed to be infallible) is also outright rude and frankly, negligent as it disadvantages your daughter. Not because your psychotic ass thinks everyone is out to get you and you honestly believe a neurosurgeon has enough time to run a petty vendetta against you… but because you yourself denied your daughter any semblance of normal because you’re ableist. You can’t accept anything but normal. Sorry but your daughter is disabled. She was born that way. Not because of vaccines but because shit fucking happens. There is no answer. You need to learn acceptance of your own fucking reality and get out of your way. Learn to be present and advocate appropriately for your daughter. For a parent, nay even the parent of a disabled child, she sure has a fuck ton of spare time to run. I’ve never come across any other parent with similar circumstances with spare time she has. Maybe she could do some research on epilepsy.

How many breaks does she need? A kid free trip to Singapore and Thailand. A night alone in a hotel. A holiday with one child to QLD. A daily marathon training run. A carer to take Lulu to therapy. A night nurse. Parents visiting almost daily.. come on. The entire family is disgusting for enabling this behaviour. It just breaks my heart for Lulu. Erin 100% takes the view that Lulu doesn’t know what she’s missing or understand what’s going on, so why bother including her?
I just cannot imagine leaving one of my kids at home while taking the others on a holiday.
I remember her complaining about Lulu struggling in the heat on their last beach holiday, so they just left her in the room. At least this time they didn’t have to pay for an airfare or deal with Lulu on the plane. A normal loving family would plan a holiday to suit everyone.
Evil, selfish mother AND father.

I still don’t get how on one hand she’s saying she literally can’t even drop Lulu at preschool, and then a minute later still talking about sending her mainstream??

Also, I have a four year old. At that age they are sweet and smart and curious and non-judgmental. Kids would absolutely go to a party for Lulu and play with her. How heartbreaking to just completely write her off like that.

She’s infuriating. How does she not see that getting out at dinner/bath time for an 11km run is down time? How does she not know that everyone with kids is fucking exhausted? How does she not know that almost every kid plays up at bedtime, that there are plenty of people who get their kids down at a reasonable time, only to have them wake up and fuck around for a couple of hours? It’s not just Lulu! If she’s exhausted maybe training for a marathon isn’t the best idea.
I can’t believe she tried to spin her reasons for training into supporting epilepsy and how much cash she’s raised. Like, no, you just enjoy running and the challenge of training for a marathon, it has nothing to do with epilepsy or Lulu.
I would love to know what Dave is like, because how he puts up with Erin is beyond my comprehension. She is just a huge ball of selfishness, negativity, narcissism and anger. What positive attributes does she have?
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Also, what time are they putting that 4 YEAR OLD child to bed if she’s been asleep already and waking up at 7pm?! I have two very ‘normal’ kids so I have no experience with kids with issues like Lulu and am happy to be corrected if she would in fact need to be put to bed at 5:30/6pm, but maybe try putting her to bed later? They expect her to sleep 14 hours overnight plus all the sleep during the day. It’s not rocket science, the kid isn’t tired. It’s like they just want her to sleep her life away so she’s easier to manage. A 7:30 bedtime would suit a four year old much better. Just because Tom goes to bed at 6/6:30, doesn’t mean it’s suitable for Lulu.

She really doesn’t know how to respond to a seizure.
I’m a mum of an epileptic child and it’s bloody scary seeing your child seize, but panicking and blowing in their face isn’t that way to respond.

I recall Erin saying they only have had to administer rescue meds to Lu once. Which means virtually all her seizures are under 5 minutes. In contrast, my kid virtually never stops seizing without rescue meds. His longest seizure was close to 40 minutes, but 10-15 mins is standard.

Erin panicking like she does is seriously not helpful. Yeah we panicked the first few times but once you know what you’re dealing with and how to go about it, you just go into action mode.

Blowing in her face seems weird to me. It’s very unlikely Lu would stop breathing during a seizure and blowing in her face wouldn’t help anyway. It probably makes it harder for Lu to breathe. We just hold our son’s hand, stay close, stroke his cheek, make sure he’s safe, let him know he’s safe and that we are right there, call an ambulance and give rescue meds as required.

And I would NEVER post a video of my child having a seizure online. Those poor kids have no privacy.

I wonder what epilepsy action australia think of their “ambassador” leaving her daughter behind, building a house not designed for her daughter, avoiding anything and everything to do with her daughter including therapies.
I’m actually shook.
I knew she was a piece of shit but this… Wow.
Why would any parent of any child do this?
I can’t even imagine doing this. Tom’s fucking 1. he doesn’t NEED a holiday. she’s just teaching him the way of ableism by avoiding his sister and thinking like there’s something so hideous and wrong with her it justifies LEAVING HER BEHIND. ON PURPOSE.
No wonder Lu is so miserable for Erin. She knows her mother hates her.

As a parent of a disabled child, it’s honestly very frustrating the amount of deeply personal information she shares about Lu. I don’t need to know ANYTHING about Lu’s vagina. I just don’t. As a disabled, non-verbal child, she is already at an increased risk of abuse, and putting information like that on the internet for very public consumption just puts her in a really vulnerable, risky position. Erin’s frustration with a medical procedure could still have been aired (not that it needs to be, but we know Erin) by simply sharing something to the effect of ‘It’s been an extremely frustrating day with my concerns not listened to resulting in an unnecessary procedure for Lu that I did not consent to.’

The reality is that there’s no way two catheters were used simultaneously in the same position, Erin is uninformed. If she was correct, an incident report would have been filled out and Erin would have had a debrief.

Thanks for posting these ! Good to have especially when people question if she is anti vax. But all these responses are just disgraceful . I wonder if Dave knows she posted that they both would have chosen to be child free….
I have 3 children all w different neurodiversities. My youngest who is 6 w autism has really kept me going since losing my husband, I know people feel sorry for me and think having a child w autism on top of being a young widow is hard. But honestly if I didn’t have him it would be hard to keep going, he gives me so much joy and love and has progressed so much this year and makes me so proud. He no longer is classified as having a GDD anymore only in speech as he was non verbal until 4. But now talks a lot just his articulation isn’t great but he can read at year 4 level when he is only in kindy.My other kids are teenagers and they feel the same pride and thank me so much for having him - it took a long time to have him.
Life is hard but there is also so much that can bring joy if you don’t always focus on the negative.

Erin is waiting for LuLu to die, so she can get the sympathy of losing a child but will no longer have the burden of dealing with a disabled child who may grow into a disabled adult.

This is the reason she chooses not to get Lu her surgery.

She doesn’t want the burden of Lu into adulthood.

I think most parents would go to more effort to attend a party for Lu and make sure it was special and that their kids played with her. Most parents would be willing to help her out at drop offs or hold Tom for a bit while she managed Lu. Even if they didn’t like Erin. Most parents would be willing to catch up with her for coffee (at least once, maybe wouldn’t go back a second time ).

Complains about not having a village (obviously she does ), but then doesn’t bother turning up to daycare where she could meet other parents? Doesn’t want to send her to a special school, where she’d meet (or should meet ) other parents of children with complex needs. THAT’S your village.

MrsEyeroll said:

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.

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If you want to give 100% of your attention to a child, have one child. Fuck, even if you only have one child, they’re not getting constant one on one attention. That’s just life. Tom is the second child. Even if Lulu was “typical”, he wouldn’t be getting that level of attention.

There’s a reason social media is full of people making jokes with apologies to their subsequent children about not getting the same level of effort. It’s not a do-over of the first child, it’s always different. They just have to fit in.

Do you know what makes me irrationally angry? Pictures of Dave. Grinning like a fool. Knowing that he is the only defense that Lu has against her psychologically damaged mother and he is enabling all of it. He has the power to change that little girls trajectory and he’s not. Fuck that guy. Now when I look at him all I see is a goofy-ass giant thumb with teeth.

What Erin thinks she's doing:
- getting 'back' at them for how they treated HER.
- publicly calling them out because they didn't contact HER personally to apologise in the 24 hours they have been home (on a public holiday).
- "raising awareness"

Vs

What she is actually doing:
- making a public platform for people to air their grievances in a way that is neither constructive nor the validation they need
- increasing parents mistrust of a children's hospital
- decreasing the likelihood a parent will present to hospital with their unwell child
- ensuring that Erin (Luella) will basically be ostracised at all hospitals
- potentially open her up to defamation proceedings
- making all staff who have come in contact with her feel terrible. Doctors and nurses are humans, they make mistakes and they have feelings. Lots of nurses are the most empathetic people you can find. I guarantee you they will be feeling like shit and probably make them rethink their choice of career.