How hurtful to Lu that Erin said she is “essentially” a first time Mum - ouch! This is what bugs me. She has this curated vision of motherhood and how it’s meant to be, and she feels she is owed that, and because Lu didn’t give her that experience she is bitter and it “doesn’t count”. But in reality, in the very real world where nothing is perfect, EVERY mother has a unique experience of motherhood - it is never the perfect vision EVER. you’re not “essentially” a first time Mum to Tom because you didn’t get to experience your perfectly curated vision of motherhood with Lu. Please Erin see Lu as the beautiful unique child she is, stop discounting her existence and celebrate her!!
- Notice
Kalesmoothie
Chatty Member
Sorry but plenty of us live with this reality.
Lots of us have children who will not live independently, and who will eventually go into full time care when we are too old / frail.
It’s not just epilepsy. And it’s not just their family. This isn’t news. She’s just so tunnel visioned that they’re the only people in the world to live this reality.
Yes it’s scary. yes we all cry about it. Even thinking about it twists my stomach and my kid is the same age as Lu. He will not be independent. we know that. miracles don’t happen. But i work with my psych to understand that and make sense of it. And at the end of the day, we have today. No tomorrow. He might not live for 30 years. I don’t know what his brain will do. So, we rejoice in what we do have TODAY.
Reality sucks. Life is exceptionally difficult with severely disabled children who may die unexpectedly.
But you have to keep going, and find a way. Because without us they have nothing and no one, or they aren’t here at all, and that’s a far worse reality.
Sorry i might sound harsh, but i’m not buying this. This is the everyday of many, many families. If only Erin took the time to lean into it, learn from others, connect with people who do share similarities years ago. She wouldn’t be so bitter, so anxious, so angry. And we all are at times, but it’s not all consuming, it cannot be, because they fucking matter and deserve to not be perceived as burdens or reason for depression.
---
Lots of us have children who will not live independently, and who will eventually go into full time care when we are too old / frail.
It’s not just epilepsy. And it’s not just their family. This isn’t news. She’s just so tunnel visioned that they’re the only people in the world to live this reality.
Yes it’s scary. yes we all cry about it. Even thinking about it twists my stomach and my kid is the same age as Lu. He will not be independent. we know that. miracles don’t happen. But i work with my psych to understand that and make sense of it. And at the end of the day, we have today. No tomorrow. He might not live for 30 years. I don’t know what his brain will do. So, we rejoice in what we do have TODAY.
Reality sucks. Life is exceptionally difficult with severely disabled children who may die unexpectedly.
But you have to keep going, and find a way. Because without us they have nothing and no one, or they aren’t here at all, and that’s a far worse reality.
Sorry i might sound harsh, but i’m not buying this. This is the everyday of many, many families. If only Erin took the time to lean into it, learn from others, connect with people who do share similarities years ago. She wouldn’t be so bitter, so anxious, so angry. And we all are at times, but it’s not all consuming, it cannot be, because they fucking matter and deserve to not be perceived as burdens or reason for depression.
---
it’s a word salad, i could honestly interpret it either way. i’m sure she’ll do more stories about itI take it surgery is off the table then
Last edited:
I have a medically complex child, with a brain injury and my husband and I forever say. We couldn’t change a thing, because if we changed it. We wouldn’t have her, and good or bad. I cannot imagine a world without her in it
Of course we’d change the things that had happened, but if that meant not having her. No way
dulcielaroux
Active member
Now suggesting she can’t get an appointment with the neurologist for five weeks because they’re punishing here. Ffs. That’s an amazing turn around on a specialist appointment in the first place, and also that’s not how doctors book appointments? Based on who they want to punish? What an insane thing to suggest!
influencerstalk
Well-known member
Yes and especially saying that after saying that Lu’s bedroom wlll be downstairs seperated from the family ?
Why with the risk of this would they do that ?????
All the bitching about non inclusive playgrounds, the bathrooms at the hospital etc and then she has the privledge of a custom new build and puts no measures in place for accessibility for Lu after saying she will NEVER walk ! But then saying we don’t know what the future holds…
Reading through the lines
And this could well be another reason why Chrystal left
RawlingsBlue
Chatty Member
Maybe Erin should take a leaf out of Jaspers mum Sas book. What she says here about her son is profound.
Attachments
Kalesmoothie
Chatty Member
She has this fucked up perception that there’s two types of kids.
Disabled (worse) & Typical (better)
Just shows the type of person and “friend” that she is that she pays no attention or mind to anyone in her life except her.
Would not occur to her that people with TyPiCaL kIdS also have struggles.
Honestly she needs help to change her attitude.
My kiddo isn’t epileptic like Lu but he has some serious stuff going on and he’s the same age, we just started his wheelchair process for him. and we adore him and don’t focus on the negatives because that’s just not helpful to anyone. Life’s to be lived and enjoyed. If she took the time, she’d learn a LOT from her beautiful little girl and the way that Lu sees the world.
We take him to things he may enjoy and cope with (such as the park) and we adapt them to find a way so we see him smile and laugh.
Yes it’s hard and i would love to take his struggles away.
But that’s not going to happen and i love the child in front of me, not one i “thought” i would have. Or in erin’s case, the one she thought she was entitled to.
It’s like Erin sees her life as continually drawing the short straw and like Lu’s existence is some kind of slight to her character or the life she thought she was entitled to. Yet if she took off her miserable lense of her perception, she’d see she’s actually doing okay and has a lot to be appreciative and thankful about. A husband, no financial worries, no need to work, a full time aide, a night nurse, a brand new home being built, living in a beautiful location, LIVING children, just to name a few.
My heart just breaks for Lu. imagine all the comparisons she would hear each day.
Disabled (worse) & Typical (better)
Just shows the type of person and “friend” that she is that she pays no attention or mind to anyone in her life except her.
Would not occur to her that people with TyPiCaL kIdS also have struggles.
Honestly she needs help to change her attitude.
My kiddo isn’t epileptic like Lu but he has some serious stuff going on and he’s the same age, we just started his wheelchair process for him. and we adore him and don’t focus on the negatives because that’s just not helpful to anyone. Life’s to be lived and enjoyed. If she took the time, she’d learn a LOT from her beautiful little girl and the way that Lu sees the world.
We take him to things he may enjoy and cope with (such as the park) and we adapt them to find a way so we see him smile and laugh.
Yes it’s hard and i would love to take his struggles away.
But that’s not going to happen and i love the child in front of me, not one i “thought” i would have. Or in erin’s case, the one she thought she was entitled to.
It’s like Erin sees her life as continually drawing the short straw and like Lu’s existence is some kind of slight to her character or the life she thought she was entitled to. Yet if she took off her miserable lense of her perception, she’d see she’s actually doing okay and has a lot to be appreciative and thankful about. A husband, no financial worries, no need to work, a full time aide, a night nurse, a brand new home being built, living in a beautiful location, LIVING children, just to name a few.
My heart just breaks for Lu. imagine all the comparisons she would hear each day.
Michy02
VIP Member
Erin is a Narcissist. Whole post is to gather sympathy for herself. It’s Luella who has lost that chance and her parents have had a long time to decide. Not deciding was a decision in itself. Very sad.
---
---
Yes but I think she’s already gone down based on her recent posts.
muchsmartmanybrain
VIP Member
Came here to post this too. Wants to join a first time mothers group because that is essentially what she is with Tom, a first time mum? Sorry what? Imagine Rachael said that. Oh I want to join a first time mothers group with Zak because that’s what I “essentially” am?
no Erin. You aren’t a first time “mother” with Tom. You have Lu. Just because she isn’t “typical” does not make her any less of a beautiful, precious littlegirl.
plasticshoes
Member
I think this answers it!
Attachments
boysenberry
Well-known member
I also find it so weird that only now they are consulting an OT and working out how to make the house accessible. You’d think that would be literally the first step. They have the opportunity to custom build a place suitable for their child but after the plans have all been confirmed and they are halfway through the build they still aren’t sure if there is room for a lift? Bizarre and selfish.
messiijessii
Member
I’ve written a couple of posts in this thread outlining my immense dislike for Erin’s conduct surrounding Lu. But there is also something so icky about this fundraiser. She set an utterly ridiculous goal and now is guilting her followers so hard into donating. I suffer from epilepsy myself and I can tell you right now I would never donate to her fund so that she can receive the glory of donating it. Absolutely never. Isn’t that a shame. The difference she could have made in this world if she wasn’t such a thoroughly awful person. From the way she treats Dr’s and nurses, to her thoroughly ridiculous, uneducated and dangerous views surrounding medicines and vaccines, I just can’t with this woman. She is so beyond privileged and she’ll never recognise that. There’s some people that have children like Lu who have to choose between medicine and food, who have to choose between essentials for their family or rent, or can’t afford fuel to get their children to places like NAPA. One of the most egregious things she has done recently is ask for sleep suit recommendations (a grift in itself) and then say $80 was too expensive (WTF) and then in the next story pick out interiors with an interior designer(WTF). I just can’t.
Also, these ‘major sponsors’ that’s she’s grifted into donating $5000 have received what? two? maybe three? lacklustre tags on Instagram. I mean good for them for donating but she seemed to promise a lot more than that in their ‘partnership’. She’s just a clusterfuck of a woman.
I genuinely wonder how much she herself has donated to epilepsy- from her own purse. I’m guessing zero. Because she is the main victim after all, isn’t she.
ETA- I am also so dumbfounded about the epilim (sodium valproate) and how when poor Lu was being weened she was teary etc. HOW DID SHE NOT KNOW it is a mood stabiliser as well as an anticonvulsant. Does she not have any normal conversations with her neuro? GP? She had to find out from an Instagram cal out. How do you not know how your children’s medications WORK. She strikes me as being incredibly naive and uneducated as well as being a raging narcissist and my heart just breaks for Lu every single day.
Also, these ‘major sponsors’ that’s she’s grifted into donating $5000 have received what? two? maybe three? lacklustre tags on Instagram. I mean good for them for donating but she seemed to promise a lot more than that in their ‘partnership’. She’s just a clusterfuck of a woman.
I genuinely wonder how much she herself has donated to epilepsy- from her own purse. I’m guessing zero. Because she is the main victim after all, isn’t she.
ETA- I am also so dumbfounded about the epilim (sodium valproate) and how when poor Lu was being weened she was teary etc. HOW DID SHE NOT KNOW it is a mood stabiliser as well as an anticonvulsant. Does she not have any normal conversations with her neuro? GP? She had to find out from an Instagram cal out. How do you not know how your children’s medications WORK. She strikes me as being incredibly naive and uneducated as well as being a raging narcissist and my heart just breaks for Lu every single day.
Last edited:
Swamp Life
Well-known member
Erin needs some serious help with her mindset. She could have talked about their dream home that they’re building, tailored to their family’s needs.
I get their situation is challenging, but she’s setting herself up for a life of misery to be so unaccepting of epilepsy and it’s role in Luella’s life.
Maisiemouse
Active member
Erin has had plenty of opportunity to have a thriving village, she just keeps setting all the huts on fire
screenfreelookatme
VIP Member
I bet Chrystal was heartbroken to leave Lulu too, but I can’t even begin to imagine how awful working for Erin would be.
Kalesmoothie
Chatty Member
That was a really hard post to read.
i know i’ve been harsh in my comments about Erin in the past. But that’s really fucking tough.
Anyone with a shadow of a heart would feel her words there and really feel so distressed for her- and Luella and their family. Especially poor Luella. I doubt surgery was ever going to fix it, but Erin has been looking under every rock for a magical cure that was never going to happen. Epilepsy sucks.
I have thought that She has seemed brighter since their holiday, it’s been nice to see, and it does seem genuine. The post the other day on her stories she seemed to be having a really good day with her family (and no Chrystal either!) Big for her.
Although she’s absolutely berating herself and that post is a tiny glimpse into what she must think and feel on a daily basis, i genuinely hope that now this is off the table, Erin is able - finally - to find some peace and is able to at least become comfortable and acquainted with their reality and focus on the things that they can control. for far too long she has Resisted reality and let anger and lack of control consume her. I hope now this is the final call, that she can get the proper help she needs, let this part go and focus on enjoying her beautiful daughter, who despite her huge challenges is still an incredible little human and not something to try and “fix”.
The disability community is always waiting and ready to catch parents when they need it. So i hope she has some real shifts in her perspective moving forward, because it’s the ableism and angry entitlement that isn’t well tolerated.
Life’s much better when you simply accept the (shitty) reality and get acquainted with it.
i know i’ve been harsh in my comments about Erin in the past. But that’s really fucking tough.
Anyone with a shadow of a heart would feel her words there and really feel so distressed for her- and Luella and their family. Especially poor Luella. I doubt surgery was ever going to fix it, but Erin has been looking under every rock for a magical cure that was never going to happen. Epilepsy sucks.
I have thought that She has seemed brighter since their holiday, it’s been nice to see, and it does seem genuine. The post the other day on her stories she seemed to be having a really good day with her family (and no Chrystal either!) Big for her.
Although she’s absolutely berating herself and that post is a tiny glimpse into what she must think and feel on a daily basis, i genuinely hope that now this is off the table, Erin is able - finally - to find some peace and is able to at least become comfortable and acquainted with their reality and focus on the things that they can control. for far too long she has Resisted reality and let anger and lack of control consume her. I hope now this is the final call, that she can get the proper help she needs, let this part go and focus on enjoying her beautiful daughter, who despite her huge challenges is still an incredible little human and not something to try and “fix”.
The disability community is always waiting and ready to catch parents when they need it. So i hope she has some real shifts in her perspective moving forward, because it’s the ableism and angry entitlement that isn’t well tolerated.
Life’s much better when you simply accept the (shitty) reality and get acquainted with it.
boysenberry
Well-known member
When she said typical families don’t have stress or anxiety on celebrations I laughed. I don’t think these perfect families she’s imagining actually exist (or if they do they are the exception). Who doesn’t have a relative who has gone off the rails, someone battling illness, long standing family disputes, financial problems etc. Are they the same as a child with epilepsy - of course not. But how naïve is she (I actually think it’s more a case of self absorption).