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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

In thinking that life is really cruel sometimes

63 replies

princesspuds · 05/09/2010 22:14

Earlier this evening my dd aged 6 who is paralysed from the waist down, was reading a kiddy magazine which had a height chart on it with a pic of a child standing up.

She said to me "when will I be able to stand"

How do you tell a young child that they will never walk or stand, its just so unfair

OP posts:

Original poster

princesspuds · 06/09/2010 13:10

Awww shit Hairy (((((HUGS))))) I can't even think how I would react to that, it's heartbreaking, trying to remain positive is hard especially when you go to farms and theme parks and dd wants to go on the rides and we have to carry her on but she sees the other lo's just running on ahead.

Chipping, my dd was born with Spina Bifida, she also has Hydrocephalus, Scoliosis (curvature of the spine), a build up of fluid in her spinal cord at her neck, and the Cerabellum in her brain is slipping down through the skull and putting pressure on the spinal cord as well as being doubly incontinent.

This is her life story so far

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LollipopViolet · 06/09/2010 13:23

Awww princess that's a lovely video! Nearly made me cry!

maighdlin · 06/09/2010 13:34

CRIES

hmc · 06/09/2010 13:58

Me too!

winnybella · 06/09/2010 14:09

Crying.

What a lovely little girl. And what amazing parents she's got.

ChippingIn · 06/09/2010 15:14

Princesspuds - your DD is just gorgeous! Takes after her Mother clearly! Thank you for sharing your video x It's heartbreaking that some children face so many more challenges and aren't able to be as carefree as all children should be :( It sounds as though you are very lucky to have her though, there's been a few scary times huh :( ((BIG HUGS)) How is the fundraising for her Trekie going?? How much do you need??

Your Rottie - what a lovely dog! I adore Rotties - when I was younger I and all of 7 stone wet, my friends Rottie would see me arrive and sit on the couch and come flyinggggggg across the garden and launch himself up onto my knee (knww? Whole body!!) He was 13 stonefrom memory - bloody big and the biggest sook!

Original poster

princesspuds · 06/09/2010 15:30

We are looking at about £3500 - £4000 to get the additional bit like lap belts, special padding and cushions etc, we are waiting on DP's work to get a venue as they already have the acts lined up, I know a few people from the radio who will be willing to compare/get prizes and plug the event, I know a few sports personalities (welsh ones) who would be willing to donate prizes and put in appearances.

We know Tia is going to have a load more ops yet, she is probably going to need an op on her spine soon and more surgery on her neck and spine to ease the pressure of her brain pushing against her skull.

Enzo is a big fat oaf who loves playing on the trampoline and uses it as his bed in the sunny weather.

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ChippingIn · 06/09/2010 15:46

PS It's a 'do-able' amount :) Would it cover all her needs or would she need another one as well? (like an electric one or something?). The 'do' sounds great - I hope you get a venue soon.

More ops - poor, poor little mite, it's just not bloody fair :(

How is she doing at school?

Enzo :) Brilliant name too!

Original poster

princesspuds · 06/09/2010 15:56

She wouldn't need another as it is suitable for adults/kids, we prefer her not to have an electric one as we want her to maintain her independance as well as building up her upper body strength.

That covers everything she needs.

She is doing great in school, she is in mainstream but just needs a 1-1 for her toileting needs.

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ChippingIn · 06/09/2010 16:16

PS When my godson needed a WC we had a variety of them for different stages/needs, the electric one was great (he was quite heavy) but it was a nightmare when he decided he could do it himself I don't think there was a doorway left whole, he had a few 'bangs' and there were some mighty scared people out there!!

countrybump · 06/09/2010 16:20

That's a beautiful video, you have a lovely DD, thank you for sharing.

I wish you every success with your fundraising efforts.

Original poster

princesspuds · 06/09/2010 16:26

Tia has been self propelling since she was 3, she had a puschair type chair before and was getting frustrated by it as she wanted to move.

It took several months of me nagging and telling them we would buy one ourselves before they relented as they told me she wasn't strong enough

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ChippingIn · 06/09/2010 16:51

My GS wasn't able to be self propelling for quite some time and tired easily when he did start, so it was up to us to do all the pushing and he was 'adult size' so it was hard work! Also one side of him wasn't too good, so there was a fair bit of going around in circles!! The Electric one was fab - but like I say, less fab when he did it himself!

Who provided the one she has now? Will they offer any financial assistance to buy the Trekie?

tholeon · 06/09/2010 17:10

Poor you. She clearly has a mother who loves her more than life itself and in that way life has been fair to her, if not in others. Will have a look at youtube when my toddler has stopped whinging at me to get off the pc.

If there is a fundraising website or similar for the wheelchair let us know what it is.

mumbar · 06/09/2010 17:56

Beautiful video princess and what a beautifful dd with laodsa of personality. I was sobbing when all of a sudden the picture of her pulling a face appeared and I PMSL!!

I work in SN school for children with severe, profound and multiple learning and other disabilities and it saddens me to see the daily fight parents have to go through to secure the equipment their dc's NEED for their everyday life.

I agree with your argument for self propelled wheelchair and they do electric help ones now that assist opposed to propell so hopefully if ever needed one would fit to that wheelchair.

What events have you planned and where? Is there a fundraising account that people can do their own sponsered events for and donate? Have you tried charities such as cerebra for help with the cost of wheelchair?

tholeon · 06/09/2010 19:48

Just watched the video. Made me cry too. What a gorgeous little girl you have.

Original poster

princesspuds · 06/09/2010 20:02

Chipping, the NHS provided the chair she has ATM, but it isn't a necessity for an all terrain chair so they aren't forthcoming with funding, I had to buy Tias car seat myself which cost £1056, and her trike cost £750, both of which were regarded as non essentials.

We don't have a website set up, please don't tell me off for this, but we were originally planning to ask people to donate when DP and I get married for her WC fund instead of buying us wedding gifts, but when she won the award DP's work wanted to do something, we wouldn't dream of applying for funding from a charity as someone who is worse off than us could benefit more (we are both very stubborn)

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mumbar · 06/09/2010 20:14

Stubborn isn't necessarily a bad thing. Probably got you, dp and Tia where you are today.

GrumpyFish · 06/09/2010 20:21

princess I don't know all of your background so apologies if this is not up your street, but have you ever thought about / has anyone ever mentioned Riding for the Disabled for her? I teach RDA and it's fantastic for children (and adults) who can't walk / use their limbs, gives them a sense of mobility that it's hard to otherwise get. Your response sounds brilliant by the way.

tholeon · 06/09/2010 20:34

There is always someone worse off, but it doesn't mean you and your DD aren't entitled to help and support. But it is of course up to you how you do things and I don't know your full circs or anything - I just like to be able to do a tiny bit to help if something like your video moves me to tears!

all the best to you all

Original poster

princesspuds · 06/09/2010 20:52

Grumpy, Tia had a session at a RDA stables as part of her physiotherapy, unfortunately this has now stopped due to funding.

That said, we bought her a miniature shetland for her birthday which we are going to get it broken in to drive a trap/cart, my 12yr old dd also got a pony last month which is a shetland/welsh cob so it will be bigger and more suited for her to ride although she is only about 6 weeks old ATM.

I went to a horse festival at the weekend and saw a pony vaulting display team and I looked it up and discovered that it is suitable for disabled people too, so I am thinking about looking into this for her too.

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ChippingIn · 06/09/2010 22:31

PP - why did they say her carseat wasn't essential - did they offer one that was adequate but not as good as the one she has or did they think she would be ok in a regular car seat? It seems an odd thing to think is 'non-essential'. What benefit does she get out of her Trike - or is it just for fun?

RDA stables are brilliant - it's a shame there isn't enough funding for everything that would be beneficial :(

Photos of the ponies??

Can Tia's pony be ridden? Could you have some help to enable her to actually ride it like at the RDA stables?

Original poster

princesspuds · 06/09/2010 23:36

The car seat isn't something they regard as an essential despite it being a legal requirement for a child to have one but regular ones didn't support her and she slumped all the time.

Her trike is to help with her posture and upper body strength as it has trunk support as well.

Tias pony is too small to be ridden as he is only about six inches taller than my rottie.

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ChippingIn · 07/09/2010 00:04

It's good that you were able to get her those things yourself x

Tia's pony sounds adorable - how do you resist bringing him in at night??

Original poster

princesspuds · 07/09/2010 12:26

I have put pics of the ponies up now,when we first got Gingernut (Tia named him )

He used to try to barge in when he was in the garden, Tia kept asking if he could sleep in her room

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