Is she serious? Without surgery, Luella WILL end up in a wheelchair. She WILL be fully dependent on someone to provide her with 24/7 care. For the rest of her life. Surgery is the only hope of stopping the seizures, and Erin refuses to consent to it. And yet she's saying things like 'IF Lu needs a wheelchair.' I can't with this woman. I know there's no point, but I feel like someone in her life needs to make a FACS report for neglect.
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The if in her sentence isn’t “if she ever walks” it’s “if she dies”
I’m blunt as an axe and that’s what I feel she’s saying.
It strongly comes across that she’s just waiting for and wanting her to die so she can go on with her “perfect” new life.
Yes, that’s absolutely how it comes across to me. The ‘if’ is ‘if she survives and we HAVE to have her in a wheelchair’. Like I said before, I get the feeling she wants Lu’s disease to progress. She is very dismissive of Lu such as her ‘on a more exciting note’ comment today when she flipped from a sick sleeping Lu to the new house plans. WHAT THE?! It’s so alarming.Having a disability care worker has just enabled her to further distance Lu from the rest of her family.
I would assume so. I take so much issue with that go fund me. It was marketed to donors as financial support for surgery and that hasn’t happened and they’re still taking donations so it’s fraud.
Has anyone reported it to Go Fund Me? I thought they were pretty good with shutting stuff down if it’s dodgy.
Meanwhile they have gofundme money but also have the money to build a new house?! In this economy!? And she’s got nothing in life to smile about….but she’s getting a brand new house?! There are people right now who are homeless due to the housing crisis, can’t put food on the table, can’t pay their bills…she has a beautiful family, a home, a brand new home in the works. And yet nothing to smile about. Grow up, Erin, and get some perspective
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
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
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Yes I have to disagree with the collection of go fund me money, especially still having it active and having the link on her profile when there is no plan to go ahead with surgery. Does anyone remember when the NDIS funding was cut for Luella, and they told Erin they weren't providing the funding for a babysitter? Somehow they still afford to keep Erin at home, live in their current place and buy a new house with the plan to demolish the existing home and rebuild a new one, and have Crystal care for Lu very regularly. It almost looks like Erin has less to do with Lu than your average SAHM.
I thought the same thingErin 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
Now that is heartbreaking. Her feelings are valid and I can only imagine the wide range of complicated feelings one would experience in such a scenario, but there is nothing courageous about sharing this and frankly it doesn’t generate much sympathy towards Erin, only lu.
I sincerely hope no disabled people stumble upon her account and her words and see themselves as a burden. I feel for Luella because obviously her life will be filled with challenges, but what I feel the most sorry for is that she was not born into a family equipped to give her the unconditional love and support she deserves.
I sincerely hope no disabled people stumble upon her account and her words and see themselves as a burden. I feel for Luella because obviously her life will be filled with challenges, but what I feel the most sorry for is that she was not born into a family equipped to give her the unconditional love and support she deserves.
I believe the NDIS are actually funding Chrystal, as I recall she posted a screenshot showing that the NDIS were funding an RN or an EN to support Lu, but it wasn’t ‘enough’ - because Erin wanted 24/7 care for Luella.
So what they plan to/are using the GFM for is
. Either way it’s bogus, because even if she had the surgery, there ate ZERO out of pocket costs for the surgery and rehabilitation. Like, OK, cafe food and petrol from home to the hospital, sure. But that is not nearly $40,000 worth of out of pocket costs. She is such a fraud.
So what they plan to/are using the GFM for is
. Either way it’s bogus, because even if she had the surgery, there ate ZERO out of pocket costs for the surgery and rehabilitation. Like, OK, cafe food and petrol from home to the hospital, sure. But that is not nearly $40,000 worth of out of pocket costs. She is such a fraud.
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.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
The Go Fund me states it's for the surgery but Erin recently posted the funds were collected for a full time social worker (SW). Seems really dodgy.I believe the NDIS are actually funding Chrystal, as I recall she posted a screenshot showing that the NDIS were funding an RN or an EN to support Lu, but it wasn’t ‘enough’ - because Erin wanted 24/7 care for Luella.
So what they plan to/are using the GFM for is
Wait what?!?! People didn’t donate for that though? They donated for the surgery?!?! How is this okay???
I doubt NDIS has declined Erin’s request for care for Lu. More likely, they have declined Erin’s request for 24/7 care, as they should. She was probably given the option of x number of hours of respite per week and she’s turned it down.
However, that GFM money won’t pay for Chrystal on a full time salary for even 6 months, so I’d love to know what they’re going to do when it runs out.
However, that GFM money won’t pay for Chrystal on a full time salary for even 6 months, so I’d love to know what they’re going to do when it runs out.
The money was also donated to go towards a nurse to look after Lu after surgery, not for a support worker because Erin had another child. Fair play if that was made clear on the GoFundMe, but it only talks about it being for a nurse after surgery. So if surgery does end up happening, I doubt there will be money left for a nurse.
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I thought Go Fund Me were pretty strict on this sort of stuff?
She should in the very least put an update on the page because people are still donating. She could even offer to refund people if they didn't want the money going to a support worker. Of course no one would want a refund because the support worker has been the best thing for Lu, but at least she would be open and honest where the money was going.
The NDIS would not fund what a parent would do to provide usual care for their child, they would fund care outside of this for example, respite - because Luella’s epilepsy may mean sleep deprivation or monitoring well in excess of what parents of children without disabilities would experience. It would not replace the parental care role ever. All government funded schemes have limitations.
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