Erin - Little.Lulu.Love

[scrantonstrangler]

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

 

[Buzzy_beeeeee]

I don't think it's OK, I just don't think it's sooooooo terrible, in the scheme of things -- and I'm sure the nurse didn't go home and cry about it, like you seem to be.

I'm sorry but as a nurse myself I've recently lost a colleague due to the strain we're under and this was what put her over the edge. Don't defend someone's horrible treatment and say 'it was just over the phone and I'm sure she didn't go home and cry about it' because sometimes it's things like that that break us

 

[EggCarton]

Absolutely she’s going to be angry and negative towards the hospital system and surgeons, she’s the one that has ultimatum made the choice to postpone and now Lu has deteriorated so much thanks to her own mothers inability to make an decision.

I agree with this. Surgeons (multiple, in different states, countries, medical systems) ALL recommended this surgery as Lulu's best option TWO YEARS ago. Look, I don't think doctors are gods - they are infallible humans just like the rest of us. So I don't completely discount Erin's refusal to unquestionably accept anything and everything doctors say. However, the consequences of her deciding that she knows better than experienced, seasoned epileptologists and neurosurgeons the world over has caused Luella irreparable damage.

The likelihood of surgery being as effective now as it would have been two years ago when it was recommended are slim to none. I am not saying that the decision to remove half your childs brain is easy, or that it should be taken lightly. But the odds were against Luella from the beginning in terms of the likelihood of seizure control by any other means (CBD, medication, alternative therapies etc). Sure, surgery may not have had the outcome they had hoped had they done it two years ago when first recommended - I'm not saying that it would have cured Lu, because no-one can possibly know that. But the CHANCE of it helping her two years ago, versus the CHANCE of it helping now...I'm not a neurosurgeon, my educated guess is those figures are vastly different.

No-one envies Erin's position. Who would? No-one wants to make the decision to remove half their child's brain. If there were no consequences to waiting, then none of us would be questioning Erin's choice to forgo surgery for so long at all. But there always were going to be consequences to waiting, and this is what Lulu is now, horrifically, experiencing. So that's my gripe. She bet all her money on the 'I can cure my daughter because I know better than everybody' horse, but that horse was lame, limping, had pneumonia and was blind. It was never going to make it out of the stalls. Just because she loves that horse, doesn't make it a good decision to risk your daughters life, and quality of life, on.

So, at the end of the day, do I have compassion and sympathy for Erin? Sure. I'm a mother. I'd be a monster not to. But do I think her daughters life could be drastically different, and the outcome of surgery drastically more positive, had she taken the learned advice of experts in the field and made this purely about her daughter and not how she herself felt? Absolutely.

 

[EggCarton]

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.

 

[RawlingsBlue]

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.

 

[screenfreelookatme]

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.

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.

 

[Fastgirl154]

It’s actually so upsetting to see Erin describe this fantasy world of what she thinks “normal” or “typical” children should do. Even Tom is not going to live up to the complete perfection she expects, and wants from her children. I was beyond sad reading the Father’s Day post last night. Children don’t OWE parents a perfect morning because it’s Father’s Day or a perfect first sibling meeting. They don’t owe you perfect - they don’t owe you anything . You chose to bring them it to this world and the pressure on little Tom is going to be huge. He got RSV at two weeks old and she just couldn’t believe she had “two sick children”.
It’s quite unsettling watching this unfold and I hope there’s some intervention soon and Erin gets the support she needs. She’s going to create massive trauma for her children otherwise. It’s never too late to make a change.

If you ever read this one day Lu, as a disabled adult I welcome you into our community with open arms. You’re not a burden or a tragedy. You’re a beautiful disabled girl who has done nothing wrong. As a baby and a child you owed and owe your parents nothing. We love you so much and you’ll always be safe and cherished in our community!

 

[muchsmartmanybrain]

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

As a nurse myself- thank you!!! Just because we choose nursing as a career, does not warrant the abuse we cop on the daily. It’s comments like the prev poster that makes people think it’s okay to use nurses as a punching bag (metaphorically speaking in this instance)

 

[muchsmartmanybrain]

I’m ready to punch Erin in the fucking face.

Erin. You discharged Lu and went to the dr because YOU WERENT HAPPY.

It’s taking all my strength to not reply to her

Exactly THIS! IF YOU HATE THE PLACE SO MUCH - GO SOMEWHERE ELSE!!!!!! As a nurse this pains me so much. Day in day out we absolutely kill ourselves to care for our patients, often leaving our own families at home. And that’s just our rostered shifts. I won’t even start on the overtime we do, the double shifts, the 12+ hour shifts without so much as a toilet break.

 

[Maisiemouse]

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.

I don't even understand this, how on earth is a 4 months old nap more important than attending to a toddler seizing? It might come as shocking news to Erin, but having to split yourself between multiple children is something that sooo many mums have to do. Is it hard? Hell yes. But you just have to prioritise and do the best you can.

Attending to seizure > putting baby to sleep.

Have to go to a therapy appt? Baby sleeps in the car.
Have to eat and put dinner on the table? Baby goes in carrier/bouncer/cot. And if the baby doesn't sleep? Oh well. Put them to sleep once you're able to.

 

[Maisiemouse]

Just when I was really empathising with Erin and thinking I had unfairly judged her...she goes and reminds me of why I took issue in the first place .

As said above, if anyone is declining badly enough, you go to hospital and get the treatment. If you stay home, you're well enough to wait. Quite simple really.

I just don't get it...she wants the medication and MRI SO badly but won't do anything to actually get it?

 

[scrantonstrangler]

I'm so glad there's a thread here! God I cannot stand this nasty woman and her "deep" captions that are supposed to make you feel sorry for her and only her for having her life "ruined" by Lu. I'm an adult with epilepsy and delays and reading through some of her posts sent my grown ass into a bit of a panic, thinking oh god is this how my mum felt about me? Did everyone just see me as a burden? And I'm an adult with kids of my own, so if reading her posts made me feel that way I cannot even imagine how that poor little girl feels. I hope Chrystal makes Lu feel loved and special because god knows her own mum resents her.

It really pissed me off when she did a poll asking parents of disabled kids (not actually disabled people, because we know actual disabled opinions don't matter to her) what word they use instead of disability. Because she seems to think disability is a bad word and an insult. And showed replies from a bunch of other ignorant people with ridiculous euphemisms they use to avoid accepting that their children are disabled.

I'm really disappointed in mylifeoflove for being best friends with this woman because I always enjoyed following her and she clearly loves Mackenzie dearly and seems to adore Lu too, just the way she is.

 

[scrantonstrangler]

I'm SO confused. What is she upset about? She's asking for help, they've asked her to come into hospital so they can help, and now she's angry? What "ultimatum" has she been given? What other option would be preferable to her? Her bitterness and anger is clouding her judgement it seems. If the doctor had put Lu on medication without monitoring and something went wrong, she'd be upset about that too. You cannot change policies by yelling and ranting about them

She really does seem to think they're the only family in the world dealing with this. She must have been very spoiled her whole life because she is absolutely shocked that something hasn't gone her way now. You can tell she's used to getting what she wants because she's still so shocked and angry at having a disabled child, and she's shocked and angry that doctors won't perform miracles as soon as she stomps her foot and demands it.

I know people were being nicer in case she reads here and gets upset by what we're saying, but I don't care at this point. I had to read her heartless posts and wonder if my parents felt this way about me being severely epileptic, if they secretly resented me the way she seems to resent Lu. She doesn't care about how anyone else feels. If she goes searching for her name and reads gossip, that's on her. Erin isn't the one suffering, Luella is, Erin is obviously heartbroken and terrified as any parent would be but it isn't about her. Lu is the one who's sick. Lu is the one being exploited without her consent. I really do feel for them but my god she must be hard for medical professionals to have to deal with.

 

[messiijessii]

I haven’t read this thread for a while. I will. I’m just so angry I have to get this out. I want to preface this by saying that I suffer from epilepsy. Mine is controlled and nothing like Luella’s. But it is a horrible, horrible condition and not only is the fear of having a seizure (something so uncontrollable that completely debilitates you, striking with no warning) but the recovery is dreadful. Every muscle (every single muscle in your body) aches, you’ve often fallen, hit your head badly, bitten your tongue, suffering from affects of concussion, so confused- don’t know your name, the day, the week or year. I can’t even explain how bad it is. Then comes Erin- who was told 18 months ago that Luella needed brain surgery- but she knew better. Then she shamelessly grifted money in a go fund me for god knows what. Doesn’t get surgery. Complains non stop about her life. Does some faux turnaround after reading this page. A year goes by, decides to get the surgery after our country has been ravaged by a pandemic, and is shocked and appalled it doesn’t happen the next day.
My neuro is public. She writes to my GP with my management plan because it’s not always guaranteed when my next appointment will be and it’s usually 3-6 months. Therefore my GP can manage little tweaks that might need to happen in the meantime. I also require GA when I get MRI’s. I get mine privately because it’s quicker and easier. I understand it’s a luxury-but it’s a luxury Erin can afford-a) because they had a go fund me that raised A LOT of money and B) because they are BUILDING a HOUSE with and architect and INTERIOR DESIGNER in the heart of SYDNEY. and C) because Dave earns a lot and D) because it’s fucking important and I would do anything to get that MRI to the neuro so the surgery could happen. (Btw- it would cost about $800- and you’d get a medicare rebate- some places even bulk bill if you ask) I just watched those stories mouth aghast in complete disbelief. Why is her friend making phone calls etc etc- you have a neuro designated to you, yes even in the public system and they still have numbers you can call, clinics you can attend,, emergency rooms to go through if you’re as concerned as Erin pertains to be. My god- you could have done this before Tom was born and now it’s not moving at the pace you would like?! At CHRISTMAS after a PANDEMIC?! Fuck right off Erin. Poor Luella, I wish I could rescue her. Her poor little, tired body. I’m enraged.Erin is a LIAR.

 

[influencerstalk]

She always has to blame someone else or the hospital, Her family isn’t vaccinated against Covid… her and Dave were out at concerts, dinner and the epilepsy Australia event. All places where covid easily spreads…the most likely people to have infected Lu are Dave and Erin… Lu was sick w Covid, RSV etc before going into hospital. But she still is blaming the hospital for Lu having these viruses. She can’t be fucking serious !!

 

[Maisiemouse]

Okay, this is kind of ironic though. Considering they just picked a beach holiday in the middle of summer that didn't include Lulu?

 

[jumble]

Poor Lulu, it’s so sad. Erin doesn’t consider what Lulu has missed out on, because she thinks Lulu doesn’t know what she’s missing, so it doesn’t matter. It’s like someone who has a parent with severe dementia who doesn’t remember you, you could just never visit them and they wouldn’t know, but if you love your parent, you visit anyway, because even if they don’t know it, you want them to feel love. It’s all about Erin and how this affects her, she isn’t capable of seeing how it affects anyone else. I can sort of understand why some people write supportive comments, no one can truly know how they would feel in this situation, but surely there’s a limit to the support she receives when her actions are so detrimental to Lulu’s life. Lulu should be the priority.

 

[Maisiemouse]

There seems to be a number of people in this thread who either have a child with disabilities/seizures, have disabilities themselves, or who have medical background. A lot of people who know that having a child like Lu doesn't justify the way Erin talks, treats and thinks about her.

 

[MrsEyeroll]

Now she's moaning about lulu finally being able to pick up food and feed herself because it's a chip and not a carrot. There is literally no pleasing this woman. Be happy. She is feeding herself. Fucking cheer her on and celebrate this for lulu.
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If she cared to know about her daughter's food issues she would know that this is actually very common in children with sensory issues surrounding food. Think about it....a potato chip tastes exactly the same everytime. A carrot or piece of meat can taste and feel very different every single time. Kids with sensory issues notice even the slightest change in taste and texture so again if she gave a shit to even try to understand she would know that. Try exploring her issues instead of blaming her for ruining your day you pathetic piece of shit mother. Sorry but seeing her carry on that way makes me so angry and especially because I have a child with severe sensory issues with food. Frustrating? Yes of course it can be but I certainly don't sit there acting like he's ruining my life and being a pain in the ass for issues he can't help.

 

[EveryDaysASoulDay]

I had to take a break from Erin’s toxicity for a while but I see she’s up to the same petulant shit she always was. Bottom line, she’s a raging narc who sees her daughter’s health struggles as a personal affront and it pisses her the fvck off. How dare she have to deal with this?! She is perpetually offended that everybody all the time does not offer themselves up in prostration to serve her. I am convinced she goes looking for fights to pick. I cannot even imagine the frustration of the healthcare workers she encounters who feel so much for Lu but have to put up with this raging bitch and her power plays. She really is insufferable.

Mark my words, if the results of Lulu’s surgery are anything less than miraculous, Erin will excoriate everybody involved, from the front desk receptionist to the surgeon to the night janitor. I wouldn’t doubt it if part of her internal reasoning for deciding to go forward with the surgery was so that she could shift the blame off of herself and on to someone else. She was realizing that she was being blamed for delaying any real chance for improvement for Lu and she couldn’t have that. Somebody else has got to be the heavy.