Erin - Little.Lulu.Love

[muchsmartmanybrain]

The nerve of this woman. Honestly. Her most recent post with the “run down” of events from the past few days.
The most shocking comments are of course that whenever she writes aboutLuella she immediately backs it up with how hard it is as a parent. And how parents should be treated better. it makes me so angry. No matter how long or frustrating a hosptial visit might be. The experience of the healthy, able bodied parent in no way should be compared to that of the patient child. I also felt like I had the opposite response to every twist and turn. (Eg. Girlfriend 1.5 hours is not long to wait for a urine catch at all- or am I just really bad at it)

Has she previously worked in PR or politics? Her ability to spin every decision she has made and make it the doctors fault is impressive whilst also being completely frustrating.

A big thank you to nurses or any other medical professionals, allied health etc that read here. I’m forever grateful for your expertise, care and kindness towards my child during his hosptial stays. And this insight into some of the parents you might have to come across is so shocking. I respect you all immensely and wish I could tell these peanut parents off for you.

Thank you for this. I’m on the back of a 16 hour shift and reading her post was enough to bring tears to my eyes. Day in day out we absolutely bust our balls. Sometimes we do get it wrong. But from what has been said - 39.5 temp that comes down with Panadol is not catastrophic. The doctors and triage nurse would have looked for other signs of dehydration. If medical staff went off only what the parents told us - you’d be waiting days to be seen because parents typically (understandably) over dramatise situations. We can’t just go off what is essentially hearsay. There is no winning with her. If you aren’t happy with the treatment, go elsewhere. Why keep taking your child back to the same hospital if they in her words - keep getting it wrong.

 

[IAmSometimesTheWalrus]

She really has no idea what she’s talking about. Saying that Lu is hungry and needs to have food orally to get “weight in her belly” because the only food that’s going through the NGT is liquid. And that she needs to have food so she can have her medication with food. Ummmm. That’s the idea of NGT feeds Erin, it’s liquid nutrition. It’s liquid “food”. People who are solely tube fed receive all their nutrition via their tube and they have medications with the feed too. That’s literally how it works. It’s food.
The misinformation she’s spreading just with this tiny part of Lu’s care is really indicative of how poor her understanding of the complexities of healthcare is. And that’s fine; as a healthcare professional, I do not expect my patients and their families to understand and remember everything I talk to them about, they meet so many people and receive such a mass of information when their person is receiving multidisciplinary care, but I’d also not expect them to take that garbled understanding and broadcast it to 22k people… 🫠

 

[Chismes]

I cannot cope with Erin's selfishness. She said she used to find it hard watching other people post photos/video of their neurotypical kids BUT now she fills up Luella's page (which is named after her, and meant to be about awareness etc) with so much about Tom and how she is getting the experience she wanted as a Mum. She has given no thought for how many of her followers have a kid like Luella, or have epilepsy themselves, and struggle to see this narrative of her experience with a neurotypical kid being "so much better". It's disgusting and ableist and damaging. She really needs to change the name of the page "It's All About Erin" because it isn't about Luella anymore .

 

[Moomin_mama]

Of course the neuro wants to assess Lulu in hospital. She has a very serious condition and has deteriorated rapidly…and Erin is asking them to just take her word for it and prescribe her a drug that is in very sparse supply with many other people also needing what little supply is available. She needs to get over her current attitude for Lulu’s sake. Just the possibility of medication and an MRI and some reprieve for Lulu should surely have her jumping at the chance of a hospital admission?

 

[Maisiemouse]

Yeah Erin's treatment of the nurse is unacceptable, but the nurse, I'm sure, can handle a rough convo with a parent, or they wouldn't handle being a nurse.
"via vaccine", wow, I do despair.
The cortical dysplasia must have been a Lulu update you missed, that came from their neurologist - hopefully you'll accept that.

Nobody deserves to cop verbal abuse in their workplace, regardless of their profession. Find it weird that you're defending that.

 

[GeorgieBox]

Erin mentioned this two years ago on a post: "death almost being a preferred option".

It is heartbreaking to watch her push her daughter away and give up now she has her "perfect" son. She mentioned the other day that she still wants another baby, and feels she is meant to have another girl. Can't help but think she means a replacement girl

I find it abhorrent considering I’ve had a client pass away from the condition in his sleep. It has brutalised his family. Her Pollyanna bullshit is deeply insulting. Lulu was born with a piece of her brain missing, it cannot be fixed or cured. She needs unconditional support from her parents who accept the situation (not be thrilled or happy all the time, but ACCEPT) and commit to advocating for her because NO-ONE ELSE WILL. You cannot expect the medical system - which you slagged off for not having the perfect palatable answers for you - to fight for your daughter. You have to do it. Just like when your kids are sick, you care for them. You do not offload it to someone else. Erin is going to be absolutely crushed when Chrystal leaves. Because they all do. It’s a paid job which eventually does not serve them anymore. It happens all the time unfortunately in disability support. It is hard constantly reading how Erin feels about her daughter and not necessarily even separating epilepsy from Lulu. She has tarred Lulu with so much negativity and heartbreak, it’s so uncomfortable. I am aware parents of children with disability/additional/special needs do not owe us inspiration porn but to start an account like this usually involves a higher purpose. I don’t feel awareness of her condition has really been the aim anymore, it’s clearly another outlet which isn’t for public consumption. I couldn’t fathom the messages she could receive from people who may feel the same way reading her content and feeling quite insulted.

 

[EggCarton]

Like I said, my child is disabled but not in an immediately visible way. If someone is on a piece of playground equipment that is one of the only parts he can use, we….wait for it….wait our turn!!

If it is taking an excessively long time, I might start saying things aloud like, ‘Nearly our turn, bud. This little boy/girl is just finishing their turn. They had a nice long time on the swing and had so much fun! Now it’s going to be your turn! We just need to wait while they slow down and then they will choose somewhere else to play. You have waited so nicely for your turn.’ That’s generally enough for the kid and/or parent to get the message that it’s time to move on.

I would say the same thing though if it was one of my non-disabled kids waiting for a turn on something. & if the kid didn’t get the message, I would just model an appropriate response. ‘I’m sorry bud, this little boy/girl isn’t ready to finish their turn yet. I know it’s upsetting.’ Then I’d ask the child directly, kindly, ‘Would you be willing to let Jack have a turn? Jack as a disability and this is really the only way he can play at this park.’ If they said no, I’d say, ‘That’s OK. It’s hard to stop doing something when you’re having so much fun.’ And then I’d comfort my kid and move on.

My kid doesn’t deserve or require special treatment. Would it be nice for everyone to take turns in a fair way? Yes - & in my experience they always have! If the kid didn’t, oh well. They are a child. Totally developmentally normal.

 

[EggCarton]

Erin. Hi. We KNOW you read here.
Book the surgery. Do one thing for your daughter, just one, that actually puts HER needs, and HER quality of life first. Because you know what? Luella’s brain surgery IS NOT ABOUT YOU. How you feel about signing consent forms to remove half your daughters brain, how you feel you may or may not cope, that’s a you problem. So you go to therapy and get some serious help, and you work through that and find strategies or resources to help you manage those feelings and emotions and worries. What you DON’T do is make your daughter suffer relentlessly and risk her life, all so YOU don’t have to have feelings.

I mean, if your quality of life is that bad as you say, surely you’d jump at ANYTHING that has the possibility of improving that. Right? Or else accept that this is your life, and celebrate your beautiful daughter just as you celebrate your son.

 

[dontmesswithmycandles]

“That’s what uncontrolled epilepsy does to the brain”

says the woman who took her off meds against recommendations and is refusing her surgery..

 

[screenfreelookatme]

Also, thank you to the nurse who managed to do the tiny catheter so that they could do the diagnosis, after Erin failed to get a urine sample

 

[uglyguccislides]

Like everyone else I’m just speechless. To say she hasn’t known unconditional love or enjoyed motherhood in all those years with that precious girl. She honestly just thinks she’s the only person who has ever had a tough situation and everyone else has a perfect instagrammable fairytale.

I can’t wrap my head around the positive comments, especially from mylifeoflove - this has made me lose so much respect for her.

 

[muchsmartmanybrain]

Her last post/story has angered me SO much as a mum, but also as a nurse. WHAT gives her the right to be whinging about a fucking shared room. Or GERMS IN A HOSPITAL?!?! You self righteous individual. I can not deal with her selfishness.

 

[uglyguccislides]

I’m a bit delayed posting this but I’ve noticed her posting a lot more child-free outings with Dave - always accompanied with a ‘Dave and I never get to do this sort of thing. There’s been one every week or so for the last few months. Sort of contradictory there, Erin? I have two kids, same ages as her two, neither of whom have health challenges like Luella, and I haven’t been to dinner or lunch with my partner without our kids in years. The challenges she and that family face are exponentially more difficult than mine, but it feels like the privileges are also greater?

100% agree. My eldest is 6 and it’s therefore been more than 6 years since we’ve had a date night. We have no family support and we’re not as wealthy as they are to afford care. Erin doesn’t realise that there are hundreds of different ways your life can be good or bad, easy or hard, and it seems to be like she’s only drawn one short straw amongst a whole lot of privilege

 

[just taking a break]

I find her counting the days (day 1000 the worst I’ve seen so far) akin to a prison sentence. Her prison sentence, not Luella’s. I am more sure than ever that she is hoping Luella will die from her epilepsy.

 

[EggCarton]

You catch more flies with honey than you do with vinegar.

Have you ever thought, Erin, that your behaviour is actually damaging to your daughter and her care? That perhaps if you weren’t so rude, people might be more willing to go out of their way to offer basic niceties? I don’t believe Luella’s medical care is compromised by Erin’s behaviour, but I am certain the response to Erin by doctors, nurses and hospital admin is definitely on the cold side due to her ridiculous behaviour.

I have a disabled child, and I need to advocate CONSTANTLY for him. However, I use the ‘positive sandwich’ approach whenever possible. Erin could do to research and apply it too.

 

[MrsEyeroll]

“I can never get there on time not matter what I do”
Okay so don’t put her upstairs alone in the dark?

to me it sounds like she’s starting to justify sending her to a group home.

I have no idea what it would be like to have a child with such a debilitating condition but I could not imagine leaving that poor baby alone in the dark to seize while I run upstairs. She would be in a cot next to my bed. She acts as if there's no possible way to make things better for Lu when she's got options big and small to help. The surgery being the big one and hey maybe having her sleep closer to you so she's never alone during a seizure.

 

[Swamp Life]

Something hasn’t been sitting right with me, and I’ve just realised it’s Erin’s language in relation to Lu. It’s all about Erin. Examples in her recent post
- My non-verbal and disabled child
- I sat there with her privates exposed
- 2 catheters in my daughter
- without my consent
I feel like she very rarely touches on what it must be like for Lulu. It’s all about Erin.
Obviously, she is the parent and she is the one writing the posts. But it seems to me like her focus is wrong. Sometimes, it’s like she doesn’t see Lu as an independent person, but as an extension of herself. Even though Lu has a disability, she is still an individual.
I truly hope Luella recovers quickly

 

[scrantonstrangler]

So book the surgery in you fucking idiot!!

I'm guessing most of our first thought when we saw that photo was "what a lovely natural picture of a mum cuddling her little girl" but of course Erin sees it as a negative. Erin's quality of life seems great, playing full time yummy mummy with what appears to be her only child. Lu is the one having seizures and working hard at her therapies but Erin seems to think she's the one deserving of praise, attention and sympathy for doing the absolute bare minimum

 

[Sarazar12]

Hi everyone. I’ve come here to voice what I think about this ongoing situation.

Erin is completely using her position on this platform to slander her local emergency department and their staff. Could this lead another parent to avoid this place for their child because of a loud voice on a social media platform? Let’s hope not.

As an ED RN myself, there is no way that her IDC was inserted twice into the urethra, as others have said. Aside from it being impossible, there wouldn’t be an indication for the nurse to do that. Be a grown up, own up to it and stop spreading misinformation. Im all for advocating for your child, but I’m sure her tone and the fact that she would always be on her phone etc, would make her a very hard parent to manage. I’m sure the staff are intimidated by her and would be fearful of what she could do or say about them. Not sure why she was harping on about the lumbar puncture either- Lu being covid+ and ?RSV+, means that was likely the source of her infection. But hey, she knows better! Even with a septic work up, a LP is last on the list of things to be performing.
Also, there is no need to be taking photos nor
updating insta etc, whilst her child is so unwell.

I hope the hospital look into this situation properly for both Luella and the good of the greater community. I also hope the staff have the required support and guidance to ensure that Luella is cared for and treated as she deserves, despite her crazed mother peering over their shoulders.

 

[sparklingtrac]

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

Say it again for the people in the back

DISABLED IS NOT A BAD WORD