She’s singing a different tune since this thread was created
so clearly reading this…she Suddenly is going to Napa, she’s the superstar mum picking up a last minute wiggles costume for Luella, she’s at the park PLAYING WITH Luella. The weird comment about the house planning so Luella can live there for years to come or whatever she said…
I used to think she minced her words a bit and came across so overwhelmingly negative, but equally lost - like she didn’t seem to know HOW to do anything even remotely ‘normal’ with her daughter… which I get because I have a medically complex child too, who is far worse off than Luella in many ways. If there was an option for brain surgery for my daughter that could POTENTIALLY give her a chance at a longer life, and quality of life, I’d be running to put our names down.
My child has had an elective surgery and it wasn’t an easy decision by any means but largely that’s because she has a life limiting condition and will definitely die. Lulu has a chance at a long life. Why wouldn’t you be doing everything and taking every opportunity to make that happen for her? It baffles me.
Also baffles me all these napa videos… she’s doing so well, she’s learned how to do xyz. It’s amazing, I’m not disputing that… but to what end? We’ve been lead to believe if she doesn’t have the surgery she’ll continue to get worse and have more delays. So all this hard work at napa will be lost? It’ll be for nothing? Why wouldn’t you get the surgery and get back to the therapies asap to help her regain these skills, and probably hopefully progress and be seizure free?
if surgery isn’t successful will you ever be able to forgive yourself for not trying?
i guess only Erin and Dave can answer those questions. And that’s their business, but when you’re choosing to spout this stuff on a public platform so that people get invested in your child’s well-being it’s only fair that people are going to wonder and have these thoughts… yet any time anyone ever says anything to her she comes across as so abrasive and defensive. Probably more from her doubting herself as a mother than anything else… that being said I think her fundraising efforts are coming from a good place, she’s just so not likeable at this point after all her incessant whinging that it gets lost