little.lulu.love : Most liked Posts

Tom walking to hand Dave a gift, "I so wish both our kids could do this for you."
It's just...why does she have to always look at Lu through such a deficit focused lens. The NDIS and society in general will do this, because this is all they know. Has she not discovered the social model of disability, or the neurodiversity movement? #advocate, right.
Lu is RIGHT THERE. In the photos she's shared today, Lu looks happy, cheerful, cheeky, engaged in what she loves (Wiggles, toys, climbing the play couch that Erin always pulls her down from), regulated....all the things a parent could ever want for their child. But all Erin sees is the fact that Lu is not walking. UGH.

What will it take to get through to her? She is going to spend Lu's entire life wishing Lu were different. & she's going to miss out on the sweet, cheeky, determined little girl she is. THAT'S the real tragedy. Not disability. Not epilepsy. The real tragedy is Erin.

leeeeleeee said:

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.

Click to expand...

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.

marthamartyr said:

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

Click to expand...

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.

Pollie said:

She looks like a Chris Lilley character in the photo.

Click to expand...

STOP. IT.
omg.

What an abhorrent human.

My disabled child is 6m older than Lu and he is the light of our lives. Environments that he can’t tolerate are….wait for it…environments we don’t frequent. Guess how many family holidays we have had since he was born? ZERO. Why? Because it’s too hard and would be thoroughly unenjoyable for him. But we are not miserable! Because we do tons of other things in Sydney, and we celebrate all the things he can do and all the things he loves, because we would do literally anything to see him happy.

Grandparents take our other children to things our son would not enjoy/can’t tolerate. My other kids don’t miss out. But even if we didn’t have grandparents to take kids on those adventures I am raising children who would choose to stay home with their brother if the alternative was a ‘family activity’ without him.

Erin and Dave are disgusting excuses for parents. Money cannot buy class.

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.

Cassanova123 said:

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.

Click to expand...

That’s not the same thing though.. it’s not the fact that they had a break, no one would begrudge a family a break, but Erin has breaks ALL THE TIME. She doesn’t take Lulu to therapy, the most she does is take her on a swing at the park. It’s the constant negative mindset when it comes to Lulu, the constant complaining about sleep, about Lulu being unhappy, about doctors, about how she never has a break from Lulu when all we ever see is Erin having a break from Lulu.
Also, I do find it cruel to leave one child at home under the care of carers while taking your other child and acting happier than you’ve been since the last time you had a child free holiday. They went overseas with both kids not that long ago.
Erin is a nasty piece of work, and if you think it’s us criticising an involved mother who supports her child, and who needed a break from the constant care she provides, and who has to have her son looked after by friends or family while she takes her disabled daughter to intense therapies, then you’re not seeing what everyone else can see, because Erin literally does none of that.
A mother like Rachael, when Mackenzie was alive, needs respite, not a mother like Erin who only feels sad for what Erin has missed out on.

This is such an odd post considering Lulu is alive. Also your girl could always be with you if you went on inclusive holidays.

Anyone else get a bit of puke in their mouth with Erin's "Done for Lulu" plaque that she had designed to hang her running medals on? No, Erin, you are not doing this for Lu. You running benefits her in exactly ZERO way. It does not improve her quality of life. It does not give her quality time with her mum, it doesn't even raise awareness. It does exactly nothing for Lu, at all. Someone should gift her a new on that says, "Done for Erin, and Erin Only" lol.

"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.

Erin, I've made some corrections for you.
Now before you come as me, I am a mum of 3 with post natal depression/anxiety I know too well that life is not all sunshine and rainbows BUT you really are like a black cloud. Appreciate those children, appreciate the little things, enjoy time together, look at how incredible it is you all got out of the house together. Any mum will know and appreciate how difficult that is alot of days. Stop the negative narrative and maybe you'll enjoy life a little more.

Jesus christ, that post is shocking.

I don't want to be the mother of a child with severe epilepsy- Luella has epilepsy, and you are her mother. Do you wish you weren't? How can you look at your child and not think how lucky you are that you get to be the one to raise them and love them?

Why are you still so bloody shocked? You've lived this reality for 1000 days and it's like you can't believe the audacity of Luella having epilepsy. How the heck is Lu going to grow up accepting herself for who she is when you can't even accept it? With you acting like it's terrible?

A thousand days of hell? That's how you view your time with your daughter? All the cuddles and giggles and memories of 1000 days, hell? Really Erin? Do you view Luella's life as hell? Do you want her to grow up and view her own life as a living hell?

You should be ashamed because you've let your ableism taint your view of your own beautiful daughter.

You've let it devour and defeat you? This may shock you, but the seizures are not happening to you. This isn't about you. Believe it or not, Luella is a human being and the seizures are happening to her. She is the one affected by them. You are not epileptic. I am, and guess what? My life isn't a living hell! Take 1000 days to process that fact if you need. I do not hate my existence, I don't view epilepsy as a curse, because it is something that is part of me and that I cannot change.

She will always have disabilities? I have another fact that will shock you, Erin. Disability is not a curse either! I love my disabled self, I wouldn't change it, I've become proud of it and fiercely defensive of it, mostly due to people like you who see it as a negative. We don't sit around yearning to be abled. We can have wonderful fulfilling lives. Luella is disabled and that is ok. It is not a bad word. You can't change it no matter how much you want to. What you can do is accept it, embrace it, love it. Model that for her so she doesn't grow up seeing herself as a flaw. Be proud of your daughter and fiercely defend her like any mother would, fight for her rights as a disabled person, let her know she is wonderful the way she is. Please. Because frankly Erin, reading your posts about her make me want to cry. Please don't make her think that she is a mistake or something that needs to be changed. We know you read here and you're probably fuming at the audacity of people having a different opinion to you but think of that sweet girl. You may feel cheated out of an life that you thought you deserved but do not place that burden on your children.

Sorry for the absolute novel I just wrote, but she upsets me more than any other online person because it's something that's so close to me and it almost feels personal

Erin has decided she wants it, so Erin wants it NOW.

Erin is also in the position that she could easily privately fund the chair if she really wanted it.

It’s her duplicity about it all that is so psychotic. She starts out pretending to be really upset about their predicament but then gets around to admitting that they made an intentional decision to go someplace that Luella could not tolerate to have a one-on-one vacation with Tom. She admits that they consciously excluded Lu when it would have been just as easy to include her and choose another destination. (Read: they wanted to be able to pretend that Luella doesn’t exist, that they are the perfect “normal” family of three, if only for a few days.) While in the same breath playing victim, and pretending that it was a heartbreaking thing to be forced do. Just not heartbreaking enough to make the very easy choice of a family vacation that everyone could enjoy. God damn this woman is ghoulish.

Also, I would be so embarrassed to admit that I’d never been to my own daughters preschool, everything she says just makes her look like a piss poor excuse for a mother.

Seriously what the actual FUCK is her problem.

- Daughter is born with epilepsy.

--> Advised to have surgery as she is drug resistant and this gives her a shot at living a normal life.

--> Advised to have surgery ASAP as it is contained to one lobe and is an option whilst the other lobe is mostly unaffected.

--> Advised there is a time constraint and it will eventually affect the other lobe making surgery no longer an option.

--> Waits 3 years "making her decision" because it is "barbaric" to have the surgery. Waits until seizures reach a critical point before deciding they should probably go ahead.

...Oh no- the other lobe is affected?! And now surgery is off the table?! And now the neurosurgeon won't continue to see us?! What do you mean there is no other treatment option?????? The AUDACITY of the medical team. Australia is ARCHAIC.

Guess we should probably go overseas for brain surgery because Australia is so far behind in medical advancements .

Spoiler alert: Of course she will ask for funds and bitch the entire time about how Australia refuses to treat her daughter because her epilepsy is "too advanced" and she has been failed by the medical system and all the children's hospitals.

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.

Erin feels like she’s coming down with something so has ‘jumped straight on the antibiotics’ - ?! And so annoyed that Lulu is immune compromised and gets sick all the time, but has started sending Tom to daycare unnecessarily. She’s going to love those germs that he will start bringing home! (No shade on anyone sending kids to daycare, we do, but if I had an immune compromised child and didn’t need to work I think I would hold off as long as I could).

The issue isn’t the respite, it’s not them having a break. Being a medical parent is tough. The issue is Erin constantly banging on how she has no “village” no help. But is always posting her alone time on runs, the night nanny, the support workers doing the overnights.
That’s the issue, have your respite absolutely but stop harping on about how against the world is to you

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.