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Original poster

lifes not fair - hand holding required

32 replies

chocolatecakeystuff · 06/02/2013 22:52

Am mummy to dd aged 8. Was born healthy, reached normal mile stones untill age 5/6. She started to wobble a little more than the other children, which got gradually worse.

Last may we were given the news that she has a degenerative neuro condition.

n she's no long able to walk, talk, eat properly at at times breath properly. Also affects all coordination & has a tremmor.
She has fits & can't see or hear very well. Also effected her memory & general understanding.

Having one of those days where id really like to burry my head in the sand. She's such a happy little thing & I know that should make it ok. And most of the time it does. Just having a wobble today. Wish it would all go away :-(

OP posts:
XBenedict · 06/02/2013 22:54

I don't know what to say to you chocolate, I wish I could say something that would make it ok but I can't do that but I can hold your hand (virtually) xx

ratbagcatbag · 06/02/2013 22:55

Couldn't read and run. She sounds adorable, but that somehow I guess can make it harder that she tackles everything so full of life and happiness it makes it seem so unfair. Big hugs to you. X

piemistress · 06/02/2013 23:20

Big hugs chocolate and another hand to hold

Original poster
chocolatecakeystuff · 06/02/2013 23:24

Thank you all.

Its because she's so happy I feel so guilty, about feeling upset about it all. She doesn't let it upset her very often.

But then I guess she doesn't see the bigger picture, which isn't really a bad thing.

OP posts:
drjohnsonscat · 06/02/2013 23:42

That's too cruel. I'm so sorry chocolate. I can't imagine how you deal with this day to day. Don't feel guilty for goodness sake - life has been so cruel to you and DD and you have every right to be raging and angry and devastated all the time. That you are getting through the days is huge in itself. Love to you and DD.

Startail · 06/02/2013 23:52

There are no words, but have a hand.

Startail · 06/02/2013 23:55

I graduated with a girl with a degenerative condition she just managed to finish her degree in a wheel chair, we all had futures to go to....

No it isn't fair.

chipmonkey · 07/02/2013 00:36

choc.
How awful a thing to happen to your little girl. It must be heartbreaking for you. I've had my heart broken too, my little girl died suddenly, but in our case, we went from having a beautiful little girl to no little girl at all in minutes. I have no idea what it must be like to watch her deteriorate slowly. There's no point in me saying anything trite but I wish you all the strength in the world xxx

cestlavielife · 07/02/2013 16:44

ife can be cruel...

do you get support from a hospice?

as you say you can get confort from the fact she is not upset, but yes you do know the bigger picture.

i hope you can get support from a hospice and that you can reach out to charities like makeawish etc who can give you both treasured memories.

MammyKaz · 07/02/2013 17:02

Chocolate your situation is truly unfair. You've every right to want to escape from reality - I hope you do get to manage that somehow, once in a while. Hand to hold & hope today is a brighter day.

BeaWheesht · 07/02/2013 18:00

What about the local children's hospice? I know our local one will welcome a call for a chat anytime of the day or night. might help?

But yes life's so bloody unfair Sad

minmooch · 07/02/2013 19:17

Oh Chocolate I am so sorry to read about your little girl she sounds like a real trooper. My DS was healthy until just before his 16th birthday when he was diagnosed with a brain tumour. I too have watched my son deteriorate. You are so right that it is not fair for our children to suffer. As parents we have to grieve for our children, grieve the hopes and dreams we had for them and grieve the hopes and dreams they had for themselves.

There is no respite when your child is ill. It is all encompassing. It is cruel and not fair in the least.

Sending you hugs xxxx

Original poster
chocolatecakeystuff · 07/02/2013 21:49

Minmooch you've got it down to a t there.

Had never though of a hospice tbh.

Had just had a referral to make a wish from cbit, who bless them helped us out even though really were a bit out their remit.

Today is a better day. Looking forward to half term, where I plan to burry my head in the sand, ignore all the logistic paperwork & medical letter that are piling up on my desk & enjoy dd for the week.

OP posts:
BeaWheesht · 07/02/2013 22:59

Google your local kids hospice and ask if you can self refer.

Obviously I've only been to our local one but its an amazing place - not sad or scary at all. Lots of fun for the kids and special activities for any siblings and time for you to get a break and know that trained and caring people are looking after your dd. they also offer over the phone support and help with everything, seriously you should consider it.

Original poster
chocolatecakeystuff · 07/02/2013 23:04

Thank you, its something I will have a think about.

OP posts:
hellhasnofurylikeahungrywoman · 07/02/2013 23:08

Second your local hospice, I work in a children's hospice and we take self referrals from families. We offer respite either at home or overnight/longer stays in the hospice, family support and sibling support. Not sure where you are but there are some lovely hospices out there and they are nothing like the adult model, ours is very much a place of fun and happiness as well as of support at end of life.

Original poster
chocolatecakeystuff · 27/02/2013 14:54

Soooo after a few really bad days, dd really not with it, and not herself dd woke up yesterday morning with a squint.... she definatly didn't have it the day before. Hotfooted it to the gp - who phoned the neuros at oxford jr... who phoned within half hour dd is now going in for her 4th mri scan tomorrow.

Car filled with diesel bags packed etc etc. Bit worried normally have to wait 3 months to get a slot there and this time its only a 2 day wait... hmmm

Neuro said sounds like the next stage of the illness taking hold. Gp was lovely, wasn't our usual doctor (who is also very good) gave us loads of information about squints & treatments, but was clearly concerned. (Not to mention very interested)

Dd will have to be put to sleep for the scan... she's not very impressed.

OP posts:
cestlavielife · 27/02/2013 16:04

ah hope they can maybe find something treatable - could be sign of increased csf pressure which could be easily treated with shunt or ventriculosotomy? i think that may be why they want to rush for scan?, as can be treated. or as you say maybe just next stage... glasses might help... :(

Lucyellensmum95 · 27/02/2013 16:18

Oh, i couldn't not post - so so sad and Angry for you - lots of support on this board i am sure because there will be other parents who have faced such heartbreak - It makes you feel like raging doesn't it, but who do you rage at? God?

DrinkFeckArseGirls · 27/02/2013 17:39

Oh, OP. So sorry to hear about your DD. Good to hear she's happy in herself but you definitely need some handholding. Life is shit at times, esp. when unfair on our kids.

DrinkFeckArseGirls · 27/02/2013 17:41

Oh no, just read your last post. We're thinking of you. Do you have any help? Friends, family?

Original poster
chocolatecakeystuff · 27/02/2013 17:57

Thanks for all the kind messages guys.

Hopefully glasses might help, guessing they'll send an eye dr over to see her while we're on the ward, I know we've definatly got the neuro coming to talk to us. Her left eye is squinty too this afternoon. She's rollinga around the floor atm telling me she's too tired to sit up :-s

Maybe increased csf, tho they haven't said they'd do another lp which they'd normally do (had lp bone marrow biopsy & muscle biopsy last year not keen to repeat any of these haha)

Maybe she's just coming down with a virus or something but she's definatly not her usual cheeky self.

OP posts:
pinkbear82 · 27/02/2013 18:04

Sending lots of hugs to you and DD xx

Purplelooby · 28/02/2013 21:44

Sending huge hugs your way xx

Homophone · 28/02/2013 22:03

Sorry how shit. Hope you feel stronger soon.

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