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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To want to tell the naysayers to go pound salt... (A little long, but I am hurt and need to unload)

208 replies

CallMeExhausted · 12/10/2014 01:33

My DD is quite disabled, significantly physically and intellectually delayed and medically complex, but in light of the fact that she was referred to Hospice in February of 2012 and she is still with us now, she is a remarkable little girl.

Her 9th birthday in is less than 2 weeks, and she presented me with this paper this afternoon. Apparently, it is a list of what she might like for her birthday, in case anyone asks... Wink

Prior to now, she has never put this many letters on a page, and I can't honestly remember her writing any letters consistently that were not one of the letters in her first name.

I shared a picture of it with close friends and family on FB (I know...) thinking that those who have seen her at death's door would like to see something that is such a huge development for her.

I received private messages from 3 separate "family" members all basically saying that I should not be excited about her writing as it is nonsense and illegible and any 3 year old should be able to do it gee, sound like they might have been discussing it? and perhaps I should stop pointing these things out as it just shows how incapable she is.

I am crushed.

This is a little girl who has overcome tremendous odds and is writing her own story, but she is obviously facing huge challenges that she will likely never overcome. She "should" not be able to speak at all, frankly, she "should" not even be with us any more. At a very dark time, I had to plan this angel's funeral.

I sent a group reply (as clearly they were all expressing the same sentiment) that as they had never taken an active interest in DD's life, they were more than welcome to take a passive disinterest, and if they wanted to be kept apprised of how she was doing, they might want to find other ways to do it... since I had no intention of making the effort with them any more.

Was I out of line (after 9 years of trying to engage them - they are "close" relations) to finally put my foot down, or should I have been less reactionary?

I tried to upload a couple of pictures, but it is not working - I will try as responses...

OP posts:
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Original poster
CallMeExhausted · 15/10/2014 01:58

Yikes!

You are giving me too much credit - this isn't a Christmas list - it is her birthday list... and her birthday is in 9 days.

Finances here are tight (medical expenses and the electricity to run her equipment take up our "disposable" income), so I am doing my best to try and get her at least one thing on her list. She is such a sweet spirit, though, that I could buy her a trinket from the charity shop ins wrap it and she would be just as thrilled to receive it.

Again, thank you for all your kindness. I am truly fortunate to have found MN - interestingly enough, I came across it while trying to fill the hours at her bedside during one of her many six week or longer hospital admissions about 3 years ago (I used a different screen name before the data mining incident).

MN has been with us through some truly dark times, and I am honoured to consider this a place I come for respite and some warped entertainment

OP posts:
Aeroflotgirl · 15/10/2014 08:08

Smile callme. Mumsnet have been great and really supportive of dd pre dx throughout. It's like a little community.

londonrach · 15/10/2014 08:14

Id be so proud of my dd if she wrote that after the difficulties she experienced. Be proud op very proud. Block those on fb. They not worth it.

londonrach · 15/10/2014 08:30

Also op she is beautiful. You so lucky to have your amazing little girl in your life.

CalamityKate1 · 15/10/2014 09:09

Your daughter is beautiful, sounds adorable and that list is well worth celebrating!

Fuck the lot of 'em. Their loss.

whattodonow1 · 15/10/2014 09:53

Isn't it ironic that those people grew up with really crap mums/no mums be up bing the best mums ever to their kids. You are doing a fab job and should be proud of yourself. Your daughter doesn't need the rest of your hopeless family. Wishing you and your daughter all the best xxx

seasalt · 15/10/2014 10:12

Your little girl is gorgeous and you are right to be proud of her. I don't understand why anyone would say those things to you.

DialsMavis · 15/10/2014 10:29

Well done to your beautiful DD, you and her sound wonderful... Which must be all down to you as ypu family sound vile

notfromstepford · 15/10/2014 10:31

Well I think your DD is amazing. Reading your post almost made me cry with pride for her!
Your Mum, Sister & Aunt are disgusting people and I think you were incredibly restrained in your response. I hope you show them this thread to see how utterly despicable they really are.
Hope your DD has an amazing birthday.

PulpsNotFiction · 15/10/2014 11:04

I hope you feel a weight has been lifted from your shoulders now you have made the decision to go NC.

Your daughter is beautiful! What an amazing girl! When I saw her picture, my eyes welled up.
YOU are AMAZING too, against all the odds you have got your daughter to where she is today. You should be so proud of yourself as well as her.

Flowers
CuttedUpPear · 15/10/2014 13:43

Well done OP and I hope your horrible relatives get headlice Grin

Original poster
CallMeExhausted · 15/10/2014 14:41

CuttedUp I honestly laughed aloud when I read your wish for my family.

Just as an unrelated aside, to give you a view of my ridiculous home life. Last night, at about half 11, my "dear" son popped down and said I shit you not "Mum, I forgot to ask you, but I need a pancreas costume for my dramatic arts class tomorrow"

He leaves for school at half 7!!!

So, yeah, he left with a pancreas costume, because I am just that crazy.

To be honest, it sounded vaguely familiar, so he had probably asked me already and I forgot. At least I can give him the benefit of the doubt.

OP posts:
polyhymnia · 15/10/2014 14:48

I am in awe. How does a pancreas dress btw?

Original poster
CallMeExhausted · 15/10/2014 14:58

I cheated.

I made him a tabard with an oversized pancreas stitched on the front.

Perhaps that is a good thing - I have been known to get... uhhhh..... creative.

He is 6'2, though - a pancreas that big might be mildly terrifying.

OP posts:
neverletgojack · 15/10/2014 15:06

That letter is so lovely, I'm sure you are beaming with pride at how far she has come....

Not sure how proud you are of a 6'2 pancreas though Wink

Original poster
CallMeExhausted · 15/10/2014 15:29

My pancreas (uhhhh, DS) has overcome a huge number of obstacles, himself. He has the same condition as his sister, and the sister he lost, but a milder form of it. He does have medical and developmental challenges, however.

But, he is trying so hard to work so he can have an independent future - in fact, he will be writing the test this afternoon to get the learner's portion of his driving license.

He wants to become a plumber, and once he realised that would require driving (something he swore he would never do), he studied and feels confident that it is something he can do.

Not only that, he is an exceptional brother.

I am a lucky mum, indeed.

OP posts:
Aeroflotgirl · 15/10/2014 16:00

That pancreas does sound interesting. your ds seems like a lovely young man Smile

polyhymnia · 15/10/2014 20:07

Yes you must be very proud of him too.

Original poster
CallMeExhausted · 15/10/2014 21:24

Exceptionally. He just sent me a text message - he passed his driving test!!!

We have very little money, have never been able to take any sort of vacation as a family, and people look at us and declare that "I could never do what you do".

What they don't realise is that while financial independence would be nice, and not having to rob Peter to pay Paul to pay for medical equipment and supplies would be even better, I would not give up my children and husband for the world.

I am a very fortunate person, indeed.

OP posts:
Lambzig · 15/10/2014 21:50

I didn't plan on spending my late Wednesday evening sobbing, but OP your thread has done for me.

Your DC sound fantastic. Your mother, sister and aunts are idiots, please stop trying to engage with them.

CuttedUpPear · 15/10/2014 22:10

Big round of applause for your DS!

Original poster
CallMeExhausted · 15/10/2014 23:05

Thank you CuttedUp

He is pretty chuffed. I think he might be happy that he will eventually be able to put the days of 30-40 km on his bicycle to get from a-b behind him, too. He loves to ride, but it is so dependent on the weather.

OP posts:
Original poster
CallMeExhausted · 15/10/2014 23:07

And thank you Lambzig

I think that, while the decision to go NC was hardly an easy one, it is the right thing for our family.

The children and my husband are the ones I have to be responsible to, anyhow.

OP posts:
kali110 · 16/10/2014 00:35

Op you are truly wonderful.
Your children are lucky to have you.
Your mother and sister do not deserve to be called family.
I cannot believe she threw you out when you were in hospital.
My mother isn't really a believer in theraphy and thinks suicide is selfish( i do not as i have nearly been there myself) however she has been supportive and i dont believe she would ever do that.
To do that when you needed her most truly sickens me.
You're right to go nc, they don't deserve to know you and your lovely family, I'm sure you will be much better off!
I hope you have a lovely thanksgiving! X

Original poster
CallMeExhausted · 16/10/2014 13:49

Thank you, kali . I ended up having to cancel the gathering (DH was ill) but we are trying again this weekend.

And, for those who asked, here is the pancreas tabard. Not particularly impressive, but his teacher loved it, and it'll likely have set the tone for the rest of the year. I have a feeling I may regret that.

OP posts: