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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" Sad

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

OP posts:
curlymama · 05/09/2010 22:17

That is very unfair. Sad Does she ever get to stand in a standing frame? Could you put some sort of a positive spin on that?

Appletrees · 05/09/2010 22:21

Oh flip how awful for you. Yes I do. I wish all the best for your girl. Tell her she's better than everyone else in the whole world and more beautiful. Which I'm sure you do anyway.

Appletrees · 05/09/2010 22:22

Poor little lamb.

Original poster
princesspuds · 05/09/2010 22:24

She hates her standing frame as her knee twists in it (one is more flexible than the other)and it takes me over half an hour to try to get her in it on my own, so she just has one at school.

I knew it was going to happen eventually but no amount of preparation makes it easier to deal with, TBH, I think it affects me and DP more than her......how selfish does that sound?

She has to live with it but never complains even tonight she just asked the question

OP posts:
winnybella · 05/09/2010 22:29
Sad What did you say?
2shoes · 05/09/2010 22:32

that is hard.
dd hates her stander too, says it hurts

curlymama · 05/09/2010 22:32

It doesn't sound selfish at all, it's natural for a loving parent to feel heartbroken in a situation like yours. I wish I could say something to make you feel better, Sad for you.

Original poster
princesspuds · 05/09/2010 22:33

I told her that she had silly legs which didn't work, but she had really cool wheels instead and she couldn't do wheelies standing up like she does in her chair.

OP posts:
treedelivery · 05/09/2010 22:37

Oh fuck how stomach churningly horrible for you.

Your response was really good, I think. I have no knowledge or experience, but wanted to just say 'I hear ya'.

My dd is desperate for a build-a-bear wheelchair. I'm sure you have seen them but just in case you haven't thought I'd mention it.

fortyplus · 05/09/2010 22:40

A boy in ds2's year has the most amazing wheelchair - it can lift him into a standing position. It makes a huge difference. It cost a fortune, though - about £25k I think - but the family organised all sorts of fundraising events to get the money.

Original poster
princesspuds · 05/09/2010 22:47

DP's work is trying to arrange a fundraising event to get her an all terrain wheelchair so she can access beaches and forests and do other kiddy things.

Tree, I bought a doll in a wheelchair from a company called racketys, it is called the Tilly doll, they also have a teddy in an electric wheelchar, they are all soft and squishy even the wheelchairs.

I'm normally fine, but sometimes it just gets to you and you feel really shitty, the bad times are definitely getting further apart, at the end of the day there are people in worse positions than us, was just a woe is me moment.......sorryBlush

OP posts:
mumbar · 05/09/2010 22:50

was going to mention stander as fourty did. IME children have liked having the independence of them choosing when to stand up iyswim.

Is there a company you could contact to try different standers for dd.

Sad for you as a parent having to explain it to dd who sounds lovely btw.

treedelivery · 05/09/2010 22:53

Ha! Most of us have woe is me moments because little darling didn't get a ballet certificate or Mary in the nativity.

Have your moment princess. Bloody hell, have hours of moments if it helps.

Am going to google those toys. The build-a-bear one is pretty funky, but plastic, so maybe less suitable.

sparklycheerymummy · 05/09/2010 22:54

I work with children with SENs and the majority of our amazing little ones have very limited communication. I seems sooooo hard for you to have to answer a question like that. Our students couldnt ask but we have had parents who have.....and thats incredibly hard to answer too.

What about standing in water.....in a hydrotherapy pool or such like.....a compromise maybe....xxxx

treedelivery · 05/09/2010 22:56

You could laminate the height chart and jolly well measure her against it in the pool! Grin

sparklycheerymummy · 05/09/2010 22:56

Oh and one of our chaps wrote to the Beckhams and they sponsored his wheelchair....but its the buggy style with chunky grips on the tyres. Worth a try writing to some famous people?????

ApocalypseFlangePop · 05/09/2010 22:57

It's so unfair....Sad

A boy in dds class at school had a brain tumour as a baby, the operations/ treatment which saved him have left him paralysed from the neck down, on a ventilator, and fed by a tube, yet he never complains,he attends mainstream school and is very well liked, he truly is a lovely boy.

I remember one yr he wanted to do the sack race for sports day (usually school would cobble something together with his eyegaze thingy or he'd do a race in his wheelchair ) so the teachers got him into a sack somehow and ran with him, all the kids who were in the race kept up with him, and the ones who finished hopped back to support him. (whilst us parents blubbed our eyes out)

LollipopViolet · 05/09/2010 23:09

Yes yes to the pool! My friend H has cp and finds standing and walking difficult, so uses a wheelchair when we go out (she can walk round her house etc) and her sentiment about being in the pool when we go swimming was it made her feel like we were on an even playing field, and it's something we can do together.

A guy I knew at college had a wheelchair that would recline and all sorts, and I think that was £16k and he and his sister both had to go through charities to get one each :( They didn't let their condition stop them though, and apparently they can often be found in their hometown drunkenly driving into things! oops!

Your DD sounds lovely btw!

Original poster
princesspuds · 05/09/2010 23:12

This is the one we are hoping to get for her,

www.trekinetic.com/

I took her to the stockists to see if she was suitable for it and she loved it a bit too much, I had a major tantrum on my hands when I left the shop.

DP's work only got involved because my dd won a child of courage award in April and he took the award in to show his colleagues, the manager saw it and wanted the company to get involved, they are going try to match the money raised £ for £ which will boost the total, any which is left over will be donated to dd's school as they are raising money for a hydrotherapy pool for all the SN kids

OP posts:
treedelivery · 05/09/2010 23:17

Cor my dh would love that, he's mad into road bikes and mountain bikes and time trial bikes....and so on. I'm seeign some technology I recognise. When you get it you'll have to come to Dalby Forest to let dd loose Smile Wonderful for her to get such an award, and good on the company too.

Am loving the brolly and dog walking kit. I thought the price was ok, but Shock at the extras!

hmc · 05/09/2010 23:19

Oh Princesspuds - it must be difficult Sad

ChippingIn · 06/09/2010 01:33

Princessspuds WOW what a wheelchair - I just watched the whole video, very interesting. Do they do a childs one or can she use the 16" one? How much will it cost in total with the extras she would like/need?

Life is cruel and unfair :( How did your DD become paralysed?

Never, ever, ever feel bad about posting on here - it's good to do it on the chat boards too rather than just the SN boards.

A big HUG and a kick of the dustbin from french fries Chippy x

LollipopViolet · 06/09/2010 08:24

Princess, I've seen one of those chairs before (my uncle is paralyzed so we get the Spinal Injuries Association magazine and saw one advertised in there). Did you know that because the bigger wheels are at the front, all the energy the user generates in a push goes to the chair? I can't remember why, but it's more efficient.

Hope you can get one soon :) Has she picked the colour yet? Grin

sarah293 · 06/09/2010 08:52

This reply has been deleted

Message withdrawn

HairyMaclary · 06/09/2010 09:03

Those wheelchairs are fab - we are thinking of getting one for DS as he just wants to be outside doing all the normal stuff.

I have great sympathy for you princesspuds when my DS stated that 'next time I'm born I won't be damaged' I nearly fell off my chair and struggled to respond appropriately. It's very hard when they are very aware of the fact that they are different but don't really get that it's permanent.

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