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.

Just read your message and it struck such a nerve. My son was diagnosed with spastic diplegic CP in January, when he was 15 months old. It feels like we're staring into a black hole - will he walk? will he live a normal life?How do I explain what his happened to him, when his twin sister seems to be OK(born prem at 26 weeks)?It's awful & I know what you mean when you say you're so very sad. On a more optimistic note, James is responding well to physio. In January he couldn't sit unsupported - now he's sitting, crawling (a proper four point reciprocral crawl no less!), kneeling, rolling from back to front etc. Progress is slow but milestones seem so joyful and significant (more so than with his twin sister who's already walking).
If every you want to talk, whinge, cry or compare 'notes' then please be in touch.

TriciaP - really nice to hear your news. My dd is also one of twins born at 28 weeks and her brother is fine. He's still a little slow but getting there, and clearly all is ok with him so the constant comparison is awful. Also i can't help wondering if something else is suddenly going to go wrong with him too.

I am really happy to hear that your little one is responding so well though. We are still waiting for a full proper assessment for dd and haven't started physio yet so I am just waiting at the moment.

CheekyLady, so so sorry for what you are going through at the moment, and that there probably is nothing more than we can do but listen, for now.

Thomcat and HeartinTheCountry - I love the way you have said what you have said.

Cheekylady - know what I'm doing tomorrow? Having ameeting with a professional actor who has CP.

So CheekyLady, it's been a week since you posted, how are you, how's your week been. I'm not asking becasue I expect you to feel better, although it would be great if you felt just a teeny bit marginally less devestated. I just realised it was a week and wanted to check in with you really, see how you are etc.

If I am honest this week has been generally crap mostly because every time someone has asked after the twins I have bloody well told them because I can't be bothered with just saying "fine" to spare other peoples feelings right now. So, as well as dealing with it myself I am having to deal with other people's reactions, all of which have been very well-meaning, but mostly quite irritating too. I am all for being positive, but will slap the next person who squeezes my hand / shoulder / whatever and tells me that they just know she will be all right in the end.

Otherwise I feel like a terrible person because dd and ds have been little buggers this week due to teething plus having a very clingy spell. So they are driving me mad and I am very grumpy and I feel guilty for not being more patient. I just don't know how i am going to cope with serious problems which lie ahead if I am all in a flap because they are grissly. To be honest I just feel like I am not cut out for being a mum. I adore them and give them all my love and attention but I don't think that is enough. I can't handle their moods and tantrums and get very down and stressed and that isn't really very helpful for them. As I say, it doens't bode well for the future, but then it is a bit late to realise this now. And I feel extra guilty for feeling lke that because they didn't ask to be born at all never mind to a mum who can't cope, and they deserve better.

Am feeling especially low tonight because tomorrow we are off on holiday for a week and I am dreading it. I have such a strict routine with the kids and any deviation unsettles me and them but dh doesn't understand that so the whole week is likely to be a battle against him to make sure things stay reasonably on track. In addition I disagree with just about everything dh does with the kids and this is the longest we have spent together as a foursome since they were born and I am not sure I can bite my tongue for that long. And don't even start me on the job of packing for a week.

So, getting back to the original question, I'm fine, thanks for asking.

Again CHeekylady, I think everything you've said is perfectly normal and makes sense, esp the "it'll be alright" comments (and if its not, see ya later!).
It must be really hard having twins and all this stress too. Is there anyone who can help you out usually (not when you're on hol)? Any local support for someone with twins, never mind one with CP and, of course, all the things it is doing to you.
The DH situation is quite common I think, although mine wasn't like that. They usually take a lot longer to accept issues, they don't like us mums telling them what to do (even if we're right ) and they often avoid the difficulties altogether and for as long as possible. I know lots of dads who aren't like this, although I don't know what they were like in the early days, but I've also come across lots who are like this and its a big added stress for the mum.
Sorry, that hasn't helped much. Maybe the week away will help him understand more.

Hi Cheekylady,

Just wanted to say I'm so sorry you're feeling so low at present. It does take a long time to come to terms with the fact that your child has a disability - and there is no getting away from the fact that children are hard work and having twins, you really have got it piled on. I was just wondering if you are a stay at home mum or if you have a chance to get away from everything and have some time out doing something different? I do find that going to work part time enables me to switch off from my DS's problems and let someone else take over for a bit. Is that something that's feasible for you? I bet you are a fantastic mum but you are also human and you have got a hell of a lot on your plate.

Good luck with the holiday. I do know how you feel, we aren't going this year because i found it was harder work for me last year than staying at home for similar reasons to you. My child has developmental delay by the way, still not walking or talking at 2.7. I found it really hard seeing children the same age as DS running around on the beach. But in my experience it has got easier over time.

My friend's child has CP by the way and he is now 4 and delightful. Although he is not walking independently he does a lot for himself and he is so bright and funny. I hope things get a bit easier for you.