Erin - Little.Lulu.Love #2

[beebop88]

“Watching him shine, laugh and be so excited to be alive… something we will never get to experience with Lu”… do you even look for those moments, Erin? Because she absolutely does shine. And she absolutely does get excited and enjoy things. Why can’t she see that?

 

[No just No]

I have always been troubled by the way Erin speaks about Lu… something about it all, even from the very beginning (I’ve been following her for a very long time) has always sat not quite right for me
But that q&a broke my heart…
Erin get some psychological help! Please! For the love of god!
Her wishing away Lu makes my heart hurt. You parent the children you have (challenges and all) not the one you wish you had.

 

[jj4400]

Can’t believe she said they would have stayed child free. That’s so sad.

I’m not sure if it’s because I’m pregnant and very hormonal, but seeing that response actually made me sob. I just can’t imagine a parent saying that about their child. My heart just broke for both Lu, and Tom. I’ve been a supporter of Erin but that’s me done. I really hope she gets help and I hope her family see that response and encourage her to do so. I can see why she has lost so many in her support network.

 

[dulcielaroux]

Interesting…

 

[influencerstalk]

She needs to look at herself and see she is in the common denominator here. She said her old friends aren’t friends with her anymore, her Insta /influencer mum friends have all ditched her and now Chrystal. Looks like Dave also has no mates. But they complain about not having a village.

 

[GeorgieBox]

I know it sounds bitchy but Erin’s lack of resilience and foresight is so off putting. I know we shouldn’t martyr parents of children with disabilities but fucks sake, Erin has a lot more money and resources than your average parent relying on NDIS and she complains about everything. EVERYTHING. She goes to water every time something happens - come on, Erin, get your shit together. You cannot write wishy washy captions, go out for date night and write passive aggressive complaints all the time when you have two young children. One of which who has a disability. I still cringe at the idea she chose deliberately to have a second baby when she was not coping with her first. It is one of the life events where you can delay or consider deeply. You do not need to have more children when you are not coping. It’s ok. My god her entitlement is beyond.

 

[just taking a break]

I have generalised epilepsy - the seizures come from multiple areas across the brain. There is no reason for it, had since I was a child and is now well controlled by medication. Mine is obviously not as severe as Lu’s, however my parents accepted my diagnosis, cared for me and life went on. No blame, no anger, and my family is happy and stable. Erin doesn’t have to live like this.

 

[leeeeleeee]

From Rachel.

 

[leeeeleeee]

This is a woman whose daughter died in the same hospital Erin whinges about.

 

[Kalesmoothie]

Oooph. I was hoping you would say that wasn’t the case and that there was a more compelling reason that Erin condemned Lu to that future other than she just rolled the dice that the doctors were wrong and thought she could find an alternative therapy on her own. Honestly, CBD oil? It’s nothing short of delusional.

I can wrap my head around how absolutely gutting it must be for a parent presented with this. I wouldn’t wish it on anyone. But I just can’t wrap my head around not wanting to give your child a fighting chance. Now she’s pretending as if she never had any options. What is the quote, “no decision is, in itself, a decision”?

Does anybody know what the life expectancy is for someone with Luella’s condition?

LGS has a mortality rate of 4-7%, which is usually correlated to a seizure related accident, not the syndrome itself.

As with all seizures, certain types and prolonged seizures can cause brain damage or impairment or death (not isolated to LGS, any type of epilepsy). ANY seizure in any person that lasts longer than 5 minutes is considered a medical emergency.
West Syndrome, which erin has also said lu has / had, has a better outlook and isn’t really seen as life threatening.

Erin isn’t saying Lu is going to die from this, just that her prognosis is poor in terms of always requiring support, which it is for many children with severe disabilities.

It’s surprising this has only *just* dawned on her. I was thinking about it this morning and i really think she has been looking for a silver bullet this entire time. She’s expected “something” to “cure” Lu.

Now is the time for her to stop thinking Lu will be cured or “fixed”, and start looking at how they can comprehend that and navigate it as a family, she is not something to solve, and her quality of life literally depends on them.

It’s difficult to process that there isn’t a good outlook, i get it. No one wants this for their children and it’s not what we imagined when we found out we were pregnant. But there’s ways to still ensure life has value and meaning, and even joyful moments. I really hope Erin finds that. She’s going to poison herself with this continual anger and lamenting and hatred. She has a lot more support and assistance than other families in her shoes do. Honestly i think she needs to take some time off socials, so some soul searching, some real therapy. Stop distracting herself with looking for the silver bullet and start looking for glimmers instead.

 

[Michy02]

So she did the “everyone feel sorry for me Easter post” again. Predictable Erin, unsure why she can’t buy her kids some matching pj’s, fluffy bunny toy, new picture books? Do some Easter craft with Lulu like finger painting…? Just being a bit more creative so that it’s within her daughters abilities.

Next month will be her woe is me Mothers Day post! No breakfast in bed, no gifts from the school stall . Imagine being friends with someone this draining.

 

[screenfreelookatme]

I hope she has a wonderful break, all carers deserve time to themselves (not just a few hours here and there) so I def don’t begrudge her this.

I don’t begrudge her the holiday, but bitching in the same week that you don’t have a village is insane. She’s so out of touch with reality. I can’t even fathom leaving my kids and traveling overseas…full stop, to be honest…but certainly not when they were as young as Tom. It’s great that she has that level of support, but she doesn’t see or appreciate it at all.

 

[EggCarton]

I love the way she acts like all these situations completely outside of her control are what has delayed surgery for Luella. Not her refusal to vaccinate and isolate her daughter, not her failure to keep appointments, not having a second child due right when surgery was recommended, not her combatant relationship with medical professionals….nope, none of that. Instead it’s everyone else’s fault that maybe Lu’s disease has progressed across both hemispheres making surgery futile.

None of my children have epilepsy. They do have other life-limiting medical conditions though. I can tell you that if there was a therapy or a surgery or a treatment that had a reasonably good risk/benefit profile in terms of potentially curing my child of the pathology that is causing the most harm/is most likely to end their life, I would be moving heaven and earth to get the treatment/therapy/surgery IN THE RELATIVELY BRIEF WINDOW OF TIME THAT IT REMAINS AN OPTION. I’m not pretending removing half your child’s brain is something to be flippant about (it absolutely isnt) - just that, like she has told us so many times before, it’s Lu’s only hope of seizure freedom. & Erin’s chaotic, laissez faire approach to her daughter life, and quality of life, will more than likely rob Lu of that.

 

[moulindickehead]

Complaining about the playground… it’s a sensory playground designed primarily for children with sensory processing disabilities and/or autism, with purportedly in built accessible options for those with mobility aids. Did she even look at the equipment properly or just walk past and whinge because there wasn’t an immediately obvious option? Maybe if she let Luella explore it at her own pace she would be pleasantly surprised at how she is able to traverse it.

New sensory playground at The Children’s Hospital at Westmead

Children of all abilities and ages now have access to a more inclusive and diverse playground at The Children’s Hospital at Westmead.

www.nsw.gov.au

 

[jumble]

Ugh. I reported her vaccine question for misinformation. Vaccines didn’t cause your daughter to have epilepsy, just accept that she has been handed a shit card in life (not you, her), and learn to live with it. Poor Lu. She is so much more than her condition.

 

[dulcielaroux]

And why did the caption on the birthday reel have to reference Luella’s condition? Why can’t it just be a happy occasion with beautiful memories and not just an opportunity for her to play the victim card?

 

[dulcielaroux]

It’s like she just wants to remind everyone, at every possible opportunity that their life is challenging. Like it’s a competition. There’s absolutely no reason for it, no one that follows her would for a second question how hard their lives would be - Luella’s more than anyones and not just because of her health - but she just had to ram it down everyone’s throats like it’s some kind of fucked up competition. In the game of ‘who’s life is harder’ why would anyone want to win that? I’m really going to have to unfollow, she genuinely sets my nervous system off in such a bad way.

 

[muchsmartmanybrain]

This woman is never ever happy. Whinge whinge whinge. It truly astounds me. I don’t have a lot (materialistically speaking). However, I have my daughter. She has brain damage from birth but she is everything to me, regardless of how hard it can be. Also as a single parent. I just can’t get over her pessimistic attitude

 

[influencerstalk]

More digs at Lu in the next birthday post and putting so much pressure on poor Tom to be the perfect child that “saves” them all.

I know it’s been said before but I wait for him to be a difficult toddler and poor Erin also experiences what other “typical” families experience with meltdowns and defiance and a toddler you can’t physically contain. I mean my first was ok so maybe she will be lucky, but I so hope Tom gives her hell and it’s extremely typical. But I’m sure we still won’t understand what it’s like because her life is unfair.

I agree I think that post is the worst ! Typical families… I have neurodiverse children but still say we were a typical family. But having lost my husband and children’s Dad last year… birthdays, celebrations are so fking hard. The way she throws seeping typical families like every family has it easy is gross. No wonder her friends who have to live without their babies on bbirthdays and anniversary’s got rid of her.
Bring on the terrible 2s for Tom I hope he is a terror

 

[GeorgieBox]

The whataboutism is gross. Erin, we can care about multiple things at a time. Jane McGrath was integral in having breast cancer be on the national agenda. Go do something purposeful with your platform instead of whining all the time.