Erin - Little.Lulu.Love #2

[plasticshoes]

Erin is problematic as hell but on Lu’s sleeping and Erin’s teary story about that. I’m getting a lot of mumsplaining here so just want to point out:

- we dont know her hubby wasn’t in with Lu while she was screaming, for those saying Erin just left her to scream. We also don’t know if she’d been in with her and just took a break for her mental health.

- we don’t know the sleep needs of someone with Lu’s condition. Your kids might have other conditions, doesn’t mean they have the same needs as Lu and you’d approach caring for them the same way.

- Little Lu might be in pain. Constantly. Maybe that’s what’s making her scream. Not that she needs less day sleep or a later bed time.

Erin’s behaviour is super annoying and she handles things so poorly but I wouldn’t keep to her being a bad mum as no one has experience with this condition in their child.

I don’t pretend to know what it’s like to live Erin’s life, but let’s be honest; she’s an inherently selfish person who absolutely does herself or her daughter no favours. The more time that passes and the more she opens her mouth, the more I am convinced she is actually just a really unlikeable person who thinks everyone owes her something. I mean how on earth could she justify thinking her and Tom need a first time mothers group? Was she just going to rock up and pretend Lulu doesn’t exist? How does she expect other mother’s in that group to see that? I know how I’d see it, completely effed!

She constantly alienates herself against others. The stories about crying kids at the zoo? The most bizarre thing I’ve even seen. What about the weird home security videos? The stories complaining about hospital care filmed from a hospital bed?

Erin is one of the most unhinged people on social media.She is completely toxic to the point where she alienated herself from her friends by publicly shaming them with her not so cryptic stories and posts. She has repeatedly shamed her daughter and makes it very clear she would prefer life without her. She has caused so many issues with Lu’s medical care because she thinks she knows more than specialists and constantly puts doctors and hospitals down on social media. She plays with Lu’s medication without and against medical advice.

Erin’s account is about Erin and Erin’s feelings and Erin’s journey and Erin’s struggles and how Erin feels like all of her problems are caused by having a daughter with incurable epilepsy. It’s about how Erin hates doctors and hospitals and what Erin thinks of neurotypical families and how Erin’s friends don’t want to be Erin’s friends anymore because they just don’t understand poor Erin.

It is not about raising awareness for epilepsy, or neurodivergent children, or Lulu. It doesn’t celebrate Lulu. It is a platform for Erin to put Lulu down and complain about how Lu inhibits her from having the life she wants.

 

[myskincareroutine]

I’m 100% with you here - having a child with such extensive health requirements/condition would be absolutely hell on earth, it’s hard enough being a mum some days to kids without disabilities, to add that in the mix would not be easy. It is very common for people with epilepsy to sleep after seizure and considering how much seizure activity she has going on it’s no wonder her sleep/day naps are out of whack. Also think Erin is problematic and entitled (eg the hospital side of things) but I would not want to be in her shoes

This is my worry, that Erin gives off this vibe that parenting a medically vulnerable/ disabled/ neurodivergent child is hell on earth. Is it hard? Absolutely. Is it hell? Absolutely not.

My child is very similar to Luella, and I would not take them back in a second. I would do this over and over again and forever to have them in my life and to be with me as long as possible. I would love the seizures to stop, for my child's sake - not mine, but I wouldn't change anything else. We committed to our child that we would give them the most beautiful life possible, full of adventures, experiences, and love. Their epilepsy, disability, or behaviour never "ruins our day", because we are prepared, we adapt, and we are flexible.

Erin has a lot of issues she needs to work through, which unfortunately she projects onto Luella. But I would guess those issues and her toxic personality have been around well before Luella was born. Please don't look at parents with similar kids and think we are living a tortured life like Erin likes to project, because most of us actually love our kids and our lives.

 

[robbolife]

So according to her recent Insta story she is off to Thailand in 2 weeks - she also mentioned a little while ago that her and Dave are going on their own because they are oh so deserving of some time out. Ok that’s fine, but just 2 days ago she was whinging and posting stories about how she doesn’t seem to have a village around her to raise her kids? So who is looking after your kids while you and Dave are always on an adults only holiday to Thailand?

Is it…

your village perhaps….

God she is so insufferable and incredibly ungrateful.

 

[scrantonstrangler]

"Tom will always be Lulu's older brother". How offensive, Erin. I'm epileptic and was pretty severely delayed as a child, though I was lucky enough that with therapies I mostly caught up once the seizures became less frequent. I have a twin and younger siblings, all were ahead of me in most aspects- and I would have been so embarrassed if my parents suggested that they were my older siblings. Being infantalised as a disabled child and teen is the worst. Luella deserves dignity and respect. She is not like the majority of children her age, but she is still her age.

I fear she is raising Tom to look down at his older sister rather than up at her. And by "look up to her" I don't mean in the way people often talk about disabled people, as martyrs who exist only to teach others life lessons and be admired for our bravery by existing, or to make parents of typical children feel grateful that they don't have to make the terrible sacrifice of raising a helpless inconvenience.

Btw Erin, sickos use the internet to find pictures of nude children. I know it's sickening to even think about, but pretending this doesn't happen will not make it go away. It's unfair and unfortunate and horrible, but it is a fact of life, and it's more prevalent than we think.

 

[dulcielaroux]

I can’t believe she’d put Chrystal on blast like that. Or maybe I can. There was no need to go into those details. Just say that Chrystal is no longer working with them and that it’s a private matter. Why position her like she’s the bad guy - everyone could see how much she adored Luella, there’s no way it was an easy decision for her and this is just Erin twisting the knife.

 

[maybeitsnotme]

I’m new here and feel like I can’t really snark on Erin because it hits close to home. My son is older than Lu but also has pretty significant epilepsy. His impairments are no where near as serious as Luella’s but we’ve spent a lot of time in hospital and my son has much much longer seizures than Lu.
Anyway, someone posted above about how Erin said Luella has drug resistant epilepsy but she still has some improvement. The definition of drug resistant epilepsy is not gaining full seizure control after a trial of 2 different medications. So Luella is definitely in this category.
I can fully feel many of the emotions Erin talks about but if the neurologists are saying your child needs surgery, you do it. We follow whatever the doctors recommend for our son. It’s exhausting for the whole family. But Erin seems to have a lot of help (lucky her, we don’t). But the help she really needs is therapy and a lot of it. She’s going to screw Tom up if she doesn’t sort through some of these feelings.

 

[EveryDaysASoulDay]

God she is a horrid bitch. Really fucking sinister and scary.
Consciously chooses to not get Lu the surgery she needs and then blames everybody else she can possibly think of, the birthing staff / vaccines / her neurologists, for the life Luella will have to lead because of her own decisions. Complains about how hard their life is while having the luxury of a night nurse and a day carer, parents at their beck and call, are wealthy enough to build a custom home to accommodate their daughter in an upscale neighborhood on a single income and she doesn’t have to be burdened by working outside the home. Runs the day carer off due to her own horrible, toxic behaviour and then has the brass balls to slag her off on socials. Opines about how happy she and Dave could be if they didn’t have to face coming home to Lu. Is so arrogant that she thinks she doesn’t have to be accountable for the tens of thousands of dollars people donated to her based on false pretenses. Admits that they haven’t considered Luella’s limitations in building this new home. This is fucking mind blowing to me. This would be the absolute starting point and entire design brief for any other family lucky enough to have the resources to build custom but it never even entered her mind. Like, WTF?? Is she hoping Lu dies so they don’t have to worry about accommodating her limitations??? Seriously! That’s not something I’ve ever said before, I’ve hesitated to make that leap because it’s just so barbaric. But every god damn thing she does and decision she makes is pointing to that. I really do think in Erin’s heart of hearts that she is hoping Lu passes and relieves them of their burden.

 

[jumble]

It really frustrates me that it seems the only equipment at a playground she takes Lulu on is a swing. She always harps on about a swing. Take her down the slide, lay in fallen leaves with and feel them crunch in your hands, let her dig in some dirt and get messy, sit with her on a seesaw and support her going up and down. Playgrounds aren’t just about the equipment, get out into nature with her. Sit on a flying Fox with her. Lay with her on a big nest swing and watch the clouds. It’s so simple, just enjoy your child. Far out, the possibilities are endless when you accept that you might have to physically facilitate these activities. I know a family with a severely disabled child with cerebral palsy, his life is limited, he will never talk, never walk, never eat, and I have never heard them complain once. They do all these things I have just suggested with him, they give him a full life regardless of his capabilities.

 

[Maisiemouse]

Yeah...for those of us who have been following for years, this has been on the table for literal YEARS. This has nothing to do with covid, Christmas, missed appointments and 'incompetent' Neuros and EVERYTHING to do with Erin not wanting to proceed. She can throw up all the smoke and mirrors she wants but this was 100% her decision.

Also if you wanted an elective surgery for your child and your partner says no...you couldn't veto that without major waves and lawsuits. So I do feel sad for Dave being in that position.

 

[EggCarton]

If she'd think about someone other than herself for half a minute, she'd realise that the playground is PERFECT for Luella. Lu can crawl. She can bum shuffle. She can walk in a gait trainer or if someone holds her hands. She can sit in a wheelchair or a pram. She can access probably 90% of those things! The thing is, when you have a child with a disability, you need to be creative. You need to be an involved parent, which means you don't sit at a playground or park and think of all the things your child can't do. You get off your butt and off your phone, and you be your child's legs or their hands or whatever they need you to be so that they can have fun, regardless of whether the park or playground was designed with them in mind. What you DON'T do, is deprive them of opportunities and fun simply because the situation is no perfect. Because newsflash: this is life. Life is not perfect. Not for disabled people and not for anyone.
Enjoy your beautiful, daughter, Erin. She is capable of SO MUCH MORE than you give her credit for.

 

[Kalesmoothie]

i’m actually shocked. i didn’t think she would ever go that low.

For the record and anyone who finds themselves here who also has disabled kids or knows people who do and are shocked by her admission.

We don’t wish that we didn’t have them.
We find so much joy in their joy and the way they perceive the world.
Yes we are tired, overwhelmed, anxious about the future, unsupported and many of us have given up our careers to be their carers.
We would love to take away their pain and their struggles, the challenges they face and how difficult the world is.
But.
We would never, ever wish them away.
We would never wish we never had children.
We will continue to give everything to make sure they have a chance at a happy future, even though lots of us will be caring for them until we’re too old or not here any more.
We seek help, advice and have respect for the specialists who take care of our kids when we need it.
We advocate and educate respectfully when we have the energy and mental spoons.
We don’t compete.
We care so deeply about those in our lives, neurotypical or disabled, because although we’re tired, struggling or anxious, we understand that every single person experiences those things regardless of their circumstances and life isn’t a competition of who has it worse. Yes our circumstances are different and often harder but it does not mean that those we love don’t have their own struggles too.

We’ve become experts at finding joy in all the little things and all the little moments.
We take each day as it comes, and every day we just keep doing our best with our circumstances.

And again- we would never. send. our. children. back.

She’s a monster.

 

[santababy]

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

 

[sweetface2022]

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.

 

[EggCarton]

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.
---
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!

 

[influencerstalk]

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.

 

[Maisiemouse]

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.

 

[robbolife]

I’ve only just caught up on the Erin threads so excuse me for referring to something that has already been discussed. I was shocked to read that Rachel has walked away from this friendship (understandably). I never followed her but every now and again clicked on her page and read a couple of posts here and there and while I could see she was in pain I never grasped how negative she was until properly reading through tattle and then perusing more of her posts in depth.

The only reason I came across Erin’s page was through Rachel. Rachel who would visit Erin and her young baby Lulu not long after Mackenzie had passed away. Rachel would gush over this little bubba in her posts/stories and what struck me was how incredible it was for a woman to be able to show so much love and care for this baby when she had lost her own infant and had lost two very wanted pregnancies not long after. I don’t know if I could stand a moment around another baby while I was experiencing so much grief and yet here was Rachel doing it with such grace and love.

The fact Rachel has stepped away screams volumes about Erin’s behaviour.

 

[dulcielaroux]

This latest post has made me feel sick.

I work in healthcare advocacy and have for many years. I spend a lot of time working with hospitals, health departments and peak bodies around the country to improve the standard for sufferers of the condition my organisation works for.

This. Is. Not. How. You. Advocate.

Its not how you create change. You absolutely do not throw the word ‘neglect’ around like it doesn’t have incredibly serious implications for everyone involved.

Luella was in hospital for a week. She was quickly diagnosed, despite presenting on a weekend, and was given appropriate prophylactic and then specific treatment for the conditions she was suffering. She recovered and went home to be with her family. No neglect as far as I can see.

Whoever commented here earlier about her not blasting the GP who didn’t pick up the UTI is right. What about Erin’s responsibility for not vaccinating her children?

She’s friends with Rachel Cassella, she knows what good and appropriate advocacy looks like. She’s creating fear and distrust of a children’s hospital. Potentially putting children at risk because their parents avoid this hospital.

She wants to act like she knows everything about how the hospitals run and what they should/should not be doing. Then she’d know there are people employed, an entire team in fact, who’s job it is the handle patient complaints. There was channels for this that are available to her. The hospital is Required to respond to complaints made in this manner. What they can’t do is conduct consumer management via social media.

I’m ranting now but I am so so angry and sickened by Erin. Someone needs to step in and get her some support and stop this crusade. It’s an inexcusable waste of time and energy.

 

[Kalesmoothie]

Another thought i had, on the back of her obnoxious self pats, how does this woman have the nerve to bitch about how hard her life is when she has enough support to go for 1-2 hours of exercise a day!?! she honestly has NO idea of her privilege. my youngest son is medically complex & disabled and i have him with me all the time; i even attend kinder with him. My eldest is autistic. I just can’t with her entitlement and privilege.

i don’t doubt the severity of Lu’s disabilities and how draining it would be, im living it too but with 0.005% of the help she has i would DREAM to have an hour to myself
She honestly is so out of touch with her “community”. Her privilege is so, so huge with their income and her full time support worker and their brand new home they’re building and her not needing to work - and again; not discrediting the fact her partner likely works hard in his job and that she has Chrystal, those are good things that everyone deserves, everyone deserves to have support and enough money coming in and not stretching themselves thin, Lu deserves to be supported and loved and cared for. But she can’t see that and it’s so yuck. Always whinging about her circumstances, health care, everything and yet always looking for head pats and validation!!! For such an “advocate” it really feels like she’s not even one of us down in the trenches of disability parenting, affected by cost of living crisis but unable to work because our kids require 24:7 care and there’s no one else to provide it, not enough ndis funds to stretch and certainly not enough for a full time worker. Erin, you’re not connecting with other families with epilepsy and disability, you’re alienating yourself. Wake up Luella is a beautiful child who needs her mum to at least see some positives and love her just as she is and stop whinging about her all the time or using her for clicks

 

[screenfreelookatme]

At least that’s the confirmation for everyone yesterday who doubted whether Erin actually believed vaccines were responsible
---
She’s not wrong though. Vaccines, specifically the lack of them, certainly have played a role in poor Lulu’s health challenges.