DD has CP and I am devastated

[CheekyLady]

Well that's it really - I am completely devastated and not really functioning because it is all I can think about.

We always knew it was a strong possibility but pushed it to the back of our minds, but now, just short if her first birthday we have been told that yes she is showing symptoms so now we will start off on tests and assessments etc and who knows how badly she will be affected?

I just feel so sad for her - I don't want a baby with CP or anything else, I want my little girl to be perfect and I can't bear thinking about how her life might turn out if she isn't normal. Sorry if my language is not very PC but this is how I feel - this is how other people will look at her and what they will be thinking. I don't want her to be the girl everyone stares at or feels sorry for or laughs at because she can't walk properly. And how am I supposed to go on now just waiting to see how else it might manifest itself? OK now it's her legs, but what else might not be working as it should be?

I am just so very sad.

Sorry all for my interruption - hadn't actually read the thread and wouldn't have butted in just to say hi to Sparkly if I had.

Perhaps, CheekyLady, soon you may be able to spend a little time with others who have kids with CP, so you can modulate your (currently understandable) fears and frustrations and anger, and see how these kids / parents cope ?

Hub2dee, Hi, no am puffing again.. I will be giving up again soon, but I am going to go to the docs first.. and get that book.

whoops, its Mieow, not Misdee

Sparkly: See me in my office - here (going to be in and out during the day though).

Cheekylady - Came across this quote in cyberspace ths morning and thought of you ...

Two roads diverged in a wood, and I... I took the one less traveled by. And that has made all the difference.

• Robert Frost

Don't know if this will help, but I have an elderly aunt with CP. She has hemiparesis, is ambulant, and can speak, tho' is difficult to understand if you're not used to her. She has some degree of what I guess is now called learning disabilities, but we notice that her ability to understand is closely linked to whether or not she likes what you're trying to tell her.

Parts of her childhood were difficult because at that time disability was regarded as shameful and there were no concessions made to equal opps. But we also have lovely photos of her from the 1930s with her cousins ( my dad and aunts) all romping around in the garden, on horses, at the beach and generally doing kid stuff.

Now that there are far more facilities and opportunities available for people with disabilities, she's having the time of her life. She goes riding, goes on activity holidays (a brief plug here for the wonderful Calvert Trust and scandalises all the other oldies in the sheltered accommodation by staying out late and getting her nails done in outrageous colours. She has a fine sense of humour and an obsession with little china trinkets and other weird and useless objects from obscure mail-order companies, which she acquires in vast quantities. The kids all think this is fab and demand to go and visit her at regular intervals.

She is happy, has a large and loving family, friends in the accommodation where she lives and is taking full advantage of the opportunities that do exist for people with disabilties to do things they couldn't have done even twenty or thirty years ago. She's a fine old hand at moaning when her life isn't perfect, but then whose is?

hth (a bit)

cheekyLady - I will echo what others have said about it getting easier. And also allowing yourself to grieve.

Also I think it is important that you allow yourself to have negative emotions about your daughter's condition while realising that these are seperate to your feelings about your daughter. It is not a betrayal of her. It doesn't mean you love her less. Nor does it make you narrow minded. All these feelings are completely natural and allowing yourself to have them will help with acceptance.

And please keep posting, whatever you are feeling. Getting support from others who have been there really will help you through. I know it has helped me enormously.

Cheekylady, I don't have experience of CP but just wanted to say that I think your posts are wonderful. It may not be PC but its how you feel and you've expressed it very well.

I know these are only words now and you can't see them properly for the anger you want and need to feel. Go with that, be angry, be sad, think of all the neagative things, it's important. Then when you can breathe again, look at your baby and you'll see the same little girl she was this time last week. You may be seeing her through new eyes, but she's not changed. She's still the beautiful little girl you gave birth to and you'll see she's still funny and she still does the cutest funniest things and she is still very sharp and clever.

You'll learn lots of new things. You'll learn to celebrate the samllest of hurdles jumped. You'll learn to educate people. You'll learn to fight. She'll help you. You'll learn that it isn't so bad. You'll learn to accept the hand you've been dealt and learn to strong. She'll make you proud every day for the rest of your lives. It'll be tough but it'll be so rewarding.
It'll take time.

Write out the words about being in Holland. They sum it all up and do help.

Use mumsnet, vent it, we're here and we understand.

She's happy and all said and done she's healthy.

It will be hard but it will be okay.

TC xx

Well, thanks for all of the kind words. I am trying to take it all in still, but today I think I have just gone further downhill and my latest terror is the thought that what if something happens to me and one day I won't be here to look after her? And I am feeling sicker than ever.

I keep re-reading the Holland / Italy thing and I love it but it still isnt working for me. I don't feel like I am in Holland, I feel like I am in a horrible hot sticky jungle and I don't know where I am or what direction I am going in and I don't know who or what else is out there and I can only see danger in the shadows and around every corner.

you probably feel like you are in beirut. Holland will fit in later, but it will take time.

Thats is one of my worries, what if something happened to me?? I do so much for them and know they rely on me.
Have been to the hospital today for a checkup with Ds and they are happy with him. Though she did agree that his arms are mildly affected (which we already knew) So even now, 5 years after diagnosis, I still get bad days. I know that atm all these words will mean nothing to you and you can't see the wood for the trees, but it will get easier, I promise..

hello mieow

Hi Lou, how r u?

been sick all week, but feeling a bit better atm, so about to face the dlights of the kitchen to clean! How are you?

DS and Dd2 have been ill all week, so had the joys of illness, tell you what I'll start another thread rather that hijack cheekylady's

Cheeky lady, your posts are so raw and so honest, they make me tearful! Although I have no experience of CP, I think all the mums on this board, whatever their child's difficulties, empathise with how you are feeling. These are all completely normal feelings- like HITC says, you have to allow yourself to grieve and not feel guilty about that. And it may be a long time before you feel as if you're in Holland! Some of us are still on the train...
Having a child with special needs IS devastating and sometimes life is just shit and that's that. But as many of the mums on here will testify, your little girl will bring you such joy and I just know that in the forthcoming months and years you will be on here with the most amazing 'ups', as well as the downs... Sending you much love and we are all here for you...

My younger sister has CP (she's 27) - it affects her mobility and coordination quite severely but has no impact on speech and she doesn't have any real learning difficulties. She lives a normal life, has her own house, went to college and has a much more active social life than me, with many friends who are both disabled and not. It has been very hard for her, for the whole family, but she is one of the happiest, brightest people I know.

I know it must be a dreadful shock - but even with CP it is possible for your child to have a fulfilling, happy life.

my ds has cp too. Cat me anytime you like. He's 4 now, but the feeling of devastation is still with me. My dh has dealt with it v differently to me, he still thinks ignoring it will make it go away...

Feel for you Cheeky Lady

Sod the being PC, you are hurting and not without cause. We've not got a dx yet for my little ds2 and I've got a feeling that when we do I'm going to feel exactly like you. I, like many of the other mums on here, am already familiar with that feeling of wanting to scream and shout (and also the feeling of wanting to chuck yourself off that blimin train to Holland!!) but I've got a feeling that the lady who wrote the follow up poem to Holland is right.

I have met some fantastic people I would not have met if my ds didnt have SN's, I have been forced to muster courage from God knows where, to be braver than I ever thought was possible and am gradually realizing I've got to stay on that train because there is no other choice.

Hang on in there honey

Message withdrawn

You'll be going through that 'why us' stage. I often think that when things are going bad.

My dd was dx with CP at 7 months. Up to then we thought we'd got the perfect dd that we'd waited for such a long time (I had irregular periods and we'd previously lost a ds during pregnancy - that's a long story).

We weren't actually told it was CP. Her initial diagnosis was brain damage and epilepsy. It was only when another mum at a sn mum and tot group told me (I denied it at first to her) and I challenged the consultant afterwards so he confirmed CP. I remember someone said,'this is when the hard work begins'. I was just glad to have a non-life threatening dx.

Life went on. I'm fortunate as dd is a pretty girl and I hope not to sound to smug but she is not obviously disabled from her appearance UNTIL she starts to try and talk, or displays challenging behaviour.

We went through all the hopes that things would be OK. Dd started mainstream nursery and they were wonderful for her. But the gap started to widen and continuation of mainstream education wasn't appropriate. She progressed to a MLD school which was OK for a while but I had to switch her to a phys. dis school which had better facilities. Three and a half years ago, we moved counties and she is now at a special school for SLD.

She has just turned 13. She can be quite naughty and she had a bad day at school yesterday. Yet I took her to see Kylie on Wednesday and dd really enjoyed it and behaved really well. We do have to plan ahead because dd has limited mobility (doesn't need a wheelchair but has a splint). She communicates by single words or simple phrases - sometimes she gets frustrated at not putting herself across and that can lead to 'paddies'. She can nip and bite, but then she can give the most wonderful hugs, special kisses and rubbed noses.

She can write her own name but that's it! She watches pre-school videos as well as her Riverdance tape (we went to see it the other week). She loves watching Countdown and University Challenge. She loves discos and is the first one dancing. If anyone stares I have to stop her taking a swipe! You can't say life is dull in this house! And she's been on a MN meet-up.

This sounds just 'me,me,me' or rather 'us,us,us' but I'm trying to give you a case study of what's happened with us. The problem when you first get a CP dx at an early age is that you don't know what the future holds or how your child is going to develop. Keep an open mind and keep strong. I still cry sometimes - not as often as I did.

We're here for you. There are lots of other support networks around. Be aware of the 'cost-cutting' exercises in the health and education systems - help is not that readily forthcoming from these organisations as fellow MNers will tell you. Make sure you apply for DLA! My dd got allocated a sw at 12 months who visited us and said, 'Oh you are fine' and somehow forgot to tell us about DLA. I found out about it a few years later after we'd lost £6K in unclaimed benefit!

This is such a long post - sorry. But lastly, look at Francesca Martinez and Julie Fernandez . Both are succesful CP sufferers (a word I detest in that context)!

Thanks for the post DOTTEE although it is weird for me to read as I still feel completely detached. I read what you said and felt sad and happy and had to remind myself that actually this is what I am facing here - it's not just "why me" but also a bit of "is this really happening to me or am I going to be told it was all a mistake".

In some ways I want to get stuck into this situation and it might be easier once she is getting some treatment and help and there are situations for me to deal with and sort out. At the moment nothing is happening and she is so young that it isn't always obvious that there is a problem, and I am just waiting with butterflies in my stomach for "stuff" to start kicking off.