Erin - Little.Lulu.Love

[dulcielaroux]

I’ve said it before and I’ll say it again. This isn’t advocacy. This isn’t raising awareness. This isn’t ‘searching for a cure’. This is the opposite of all of those things. It’s not helping the epilepsy community, or other parents of medically complex children or even Luella. It’s actively harming all of these groups and individuals.

 

[muchsmartmanybrain]

Aren't they usually only allowed to try two times before someone else has to take over?

Correct.
If being in hospital is so shit - discharge against medical advice. If she could do a better job which apparently she can, discharge lu and do it all yourself at home. Simple.
except it ISNT that simple because nothing about medicine is easy. And what exactly is she expecting?! It’s a PUBLIC HOSPITAL!!! Not a penthouse Crowne suite???!I am RAGING.

 

[Maisiemouse]

Welp looks like someone said it that hasn't been deleted. I'm glad they did because they obviously have the past experience to comment on it which puts a lot more weight behind it.

 

[EggCarton]

At this point she’s just being rude, though. It’s like, this is not a hotel, Erin. It’s also not your home. If Lu needs a freshen up, a baby bath is actually fine. My 5.5yo and siblings still bathe in a baby bath because we don’t HAVE a full tub, and they don’t always want a shower. If Lu was older and a baby bath WOULDN’T work, hospitals have shower chairs (OT or physio dept will supply), and other bathing equipment. If you have very specific disability needs that really can’t be catered to, a bed bath sometimes is just what you need to do. Again, not a hotel, not a day spa, not your home. You are still getting clean.

& I have a disabled child. I’ve been there. We do a sponge bath, fresh sheets, fresh pjs, and all is well with the world.

 

[Swamp Life]

Lu picked up COVID and RSV outside of hospital. So not sure why Erin’s now complaining she has potentially picked up other bugs in hospital. Dave or Erin may have brought them in, you don’t really know.

Also give it a rest about the shared room. Most parents would be happy, as it means Lu is doing a little better and no longer needs the single room. Let someone else have it who needs it more. Or go to a private hospital and request a private room.

The NG tube is probably a good option for Lu atm, given her issues with eating and food aversion, they are probably getting more nutrients into her this way. Not sure why Erin is hating on it so much

 

[Chismes]

I had to have a break from Erin because I found myself really sad for Lulu. I only saw her latest post from another tattle thread so naturally I had to read it on Erins page. What the actual fuck is with the supportive comments ??? How can anyone read that & be like “ yass same “

Erin lives in fantasy land, does she think us other parents are just frolicking around the house naked skipping with our babies singing songs. She needs to pull her head out of her ass because these days are going to be easy compared to the days ahead of her if Lulu doesn’t get surgery but tbh I wouldn’t be surprised if she put Lulu in care when she’s no longer a toddler.

Erin needs EXTREME help..Lulu probably considers Chrystal her main care giver and ny heart breaks for when Chrystal no longer works with the family Lulu will be heart broken

I also suspect that Erin will put Lulu into full time care in a couple years time. She will say it is not fair on Tom (and any future perfect babies) to keep having their days "ruined".

 

[scrantonstrangler]

Poor Lu is sick and wants comfort, instead she's got her aggressive mum ranting into a phone making everything worse than it needs to be. It's like Erin hates epilepsy more than she loves Lu, hates the entire medical field more than she loves Lu. For the love of god put your anger (and your phone) aside.

I had many hospitalizations as a child, they would have been so much harder if my mum had been negative and angry the entire time. Erin, it's so much more bearable for Luella if you make it positive. It bloody sucks, yeah, but fake it for her. Befriend the nicest nurses, read and sing to her, play gently with her if she's up for it. If you act like you're in some sort of hellhole she's going to believe you. She may have many more hospitalizations in her life, don't make her dread and hate them.

 

[dulcielaroux]

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?

 

[Chismes]

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

 

[sparklingtrac]

No he didn't Erin ..that was you ..he probably said "I love my big sis"

Came here to say this exact thing …

Todays post… Jesus

further convinced she reads here now since she’s sharing (for the first time I believe?!) that she’s in therapy…
Well she’s saying what we all already knew about her feelings towards Luella
This woman’s ableism is profound and wreaking havoc on her child. Her ableism is doing more damage to the family than the epilepsy is.

 

[dulcielaroux]

She was so sick she needed to be in hospital - and unfortunately that means she was potentially exposed to, and contracted, other viruses. The alternative was that she was cared for outside the hospital, which given how sick she was isn’t a good alternative - so what does she want? Also, she probably didn’t get these 4 additional viruses from the hospital - where she’s been in an isolation room which would have strict policies around how staff were able to move in and out of it in terms of what they wear, how they wash before the come in/out. She’s probably got these extra 4 viruses the way all kids her age get them - from daycare, the park, her parents, her family, literally everywhere.

Also, I call BS on Luella having 4 additional viruses. People don’t seem to realise that RSV can cause bronchiolitis - so they hear bronchiolitis and think oh she’s got RSV AND bronchiolitis. No. One is the virus that causes the other. She hasn’t said bronchiolitis that’s me assuming but I’d put good money on it.

 

[kmartplate]

Erin is getting to experience having a typical child because pretty much every kid on earth prefers chips over carrots! Like yes, it can be annoying, but this sounds like great progress for Lu and frankly something to look for the positives in instead of giving it a negative spin.

 

[muchsmartmanybrain]

I hate to be that person. However, Erin fyi - ED presentations are triaged then treatment is provided dependent on level of severity. There may have been 3 cardiac arrests, a full resus, anaphylactic reaction- all of whom required immediate care. Fluids (as shit as it is) would have been pretty far down the list of priorities. There’s no way on earth the nursing staff triaged Lu, thought yes she needs IMMEDIATE care then just left her for three hours. No chance. The world isn’t revolving around Erin’s demands and requests.

 

[Maisiemouse]

So I was thinking that all of this was coming from (apparently) nowhere considering everything has been pretty all around positive in her life at this point. Obviously not according to Erin, but objectively she has a lot going for her right now.

Anyway.

So I decided to investigate a little bit. There is NO way this was just a coincidence. Also, both posts were made in the same time frame.

Erin is truly spiteful and she is going to be solely responsible for having no supportive women friendships if she keeps up with the passive aggression (or blatant aggression really).

See attached.

 

[Chismes]

I dunno, it also really bugs me that they are doing a Go Fund Me. Look up Dave on LinkedIn. He is a State Director of a commercial real estate investment company. He is on BIG BIG money. They can afford to hire a support worker fulltime without donations. There are other families with disabled children that need more help than them, but those families don't get it because they aren't willing to violate their kids' privacy on social media.

https://www.linkedin.com/in/david-oudshoorn-0974364b?originalSubdomain=au

 

[DaniBFitsHostage]

She is truly the most bitter, angry person I’ve come across in a long time. In her mind, Erin was entitled to a perfect, healthy child. She has clearly lived a life where she was not even aware that disabled people exist. And now that she has a disabled child, she is so angry and bitter towards everyone else on the planet. I have worked with disabled people for the last 20 years, and of course families struggle and at times get to breaking point, but I have never heard any of them speak about their children with such anger the way she does. With each of my children, I have been extremely aware that they could have a disability. Even if we are not born with a disability, any person can acquire one at any time (acquired brain injury, stroke, dementia etc). It’s like she never even considered it a possibility before her daughter was born, and she’s just so enraged that her daughter is disabled. She truly just seems like an awful person. And for the record, in my opinion, Lulu is by far the cutest kid on the gram. She is so sweet and has the most beautiful little face. Poor little darling got stuck with the short straw for a mother.

 

[Maisiemouse]

Honestly drives me bonkers...the drs have said the ENTIRE time if surgery is delayed then it may be too late and it will no longer be an option. What does it change that they *specifically* didn't mention the hippocampus. Jesus it changes absolutely ZERO. Its almost like Erin should become a neurologist so she can be absolutely 100% informed of every physiological aspect of the brain.

No...
Its like having your car serviced and the mechanic telling you that it needs to be repaired asap otherwise the engine will get further damage and may not be able to be fixed at all. But you decide to see other mechanics, trial some new oils, get the car detailed. Then the engine will no longer work and needs to be fixed right then and there. But you decide you're angry at the mechanic because even though he told you the engine needs repairing and may be damaged beyond repair, he didn't specifically tell you that the gasket can blow and the engine can no longer be fixed.

Definitely his fault.

 

[jrbilks]

Have legit just joined to put my two cents in after seeing her most recent post on her stories of Luella’s seizure.
Firstly I am so sorry for what this precious girl endures. The clip is so jarring and bought tears to my eyes. I cannot bear to imagine what she goes through every day which is why I cannot fathom why the truck her mother and father don’t pull their fingers out and try the hemispherectomy. It makes ZERO sense to me. She has a very poor quality of life which will
only become worse over time. You are out of alternate options. The hemispherectomy may give her seizure freedom so you have to try. Erin has her perfect baby now so she doesn’t care? Where is Dave? Man up for Pete’s sake and do something. I initially followed and read and watched on with great empathy but now… Erin you’re a mess mate. Take it offline. Help your daughter.

 

[screenfreelookatme]

Yuppppp. Perspective. Priorities.

Lulu has seizures, which is of course very bad, but able bodied kids are climbing on shelves, jumping off furniture and who knows what else! I feel like an average age gap is about 1-3 years and all kids that age need close supervision.

My kid has ASD, so he’s prone to absconding. It was super fun worrying about whether the house was totally deadlocked and all keys were out of reach 🫠. When he was two, I was feeding the baby and I heard the front door open (before I realised he could use keys!). So naturally I stayed with the baby so that she wouldn’t cry

 

[GeorgieBox]

All this carry on about Lulu preferring a chip over carrot/meat, has she met children before? She really has no idea. How many things does she chalk up to disability which are - children being children (ie not mini adults).