18/09/2010 at 22:29
19/09/2010 at 10:16
My little girl (3 years) has Cerebral Palsy...I agree it's a terrible difficult situation to deal with and although we have known that something wasn't right after her birth I still have a little weep when nobody is looking.
When it was first diagnosed we began to think that she would'nt be able to do anything. As it happens she is way better than we expected and even though she took ages to reach little milestones like supoorting her head, crawling, walking and talking she has done so. Her walking is very slow and she falls over loads but she never cries she simply gets back up and continues on her wobbly journey!!!
Specialists are so reluctant to give you hope as when they are very little the extent of the cerebral palsy isn't known. They believed my daughter's intelligence had been affected because she didn't talk for a very long time. As it happens she is exceptionally intelligent, reading 3, 4 & 5 letter words herself and she knows her numbers up to 100 without any help.
I guess what I am trying to say is don't give up hope on your daughter's progress and hopefully you will be pleasantly surprised and how much she will be able to do.!
Much love to you and your family xxx
19/09/2010 at 19:23
Thanks for such positive replies! I love hearing about children who are doing well. I'm already so impressed by my little girl, but sometimes it is easy to get stuck in the difficulties of the situation. I'll just keep working with her and hoping.
Also, I love that you (Dave) say that your sister is a bit of a pain! I actually daydream about my daughter causing all kinds of mayhem when she is older. I really hope she is capable of being just as much of a pain and pleasure
19/09/2010 at 20:37
Hello i have a cousin that has cerebal palsy and i remember her growing up with us as a baby through to being a toddler and child...shes just turned 21 last week and let me tell you she is the most cheekiest lovliest lady you could ever meet!
growing up we knew jade was special but she ate like us threw huge tantrums just like us and was quite honestly the funniest of all of us,she'd have us in stitches especially cause she knew she could be cheeky and almost get away with it!she wasnt treated any differently by us,she was just cousin jade!
she now goes out on the town with the girls,she drinks she SWEARS!I remember her mum being so worried about her when she was little,andrea would end up in tears a bag of nerves around her at times now she call her the biggest pain in the arse ever!
Keep up your good work and your lo will be running rings round you in no time
good luck with the future
much loves xxxx
19/01/2011 at 18:55
18/01/2012 at 20:57
I have a 5 month old daughter who suffered brain damage from a terrible birth. I wonder some days how to put one foot in front of the other, I am sitting at my work computer today staring at the screen and not being able to do my work, some days are better than others I guess. Our beautiful girl is alos suffering from colic and reflux, made worse by her condition (as if colic and refkux could get any worse). My partner is at her wits end so tired and fragile, although doing better than expected it is obvious our girl is special. Sometimes we forget our girl is nothing but perfectly "normal" than friends visit with their child the same age and it is so obvious our girl is not developing the same. I do not know why I am ariting this, maybe here I can talk about these things with people who really do understand the pain, hope, joy, anger, fear and all those emotions we are going through. Bad day today, no doubt tomorrow will be better?.
20/05/2012 at 12:12
I didn't want to read this and then not write anything, what a touching/honest thread. It reminded me of this poem
It really is a lovely piece of writing and how true that there can be some wonderful things about 'holland' that others who have'italy' will never get to experience - xx
20/05/2012 at 23:58
My daughter has cp and epilepsy, due to her brain not developing properly during pregnancy (although we didn't know this at the time)
We had no clue anything was wrong until she wasn't reaching her milestones, and she got diagnosed at 9 months old, we were devastated and spent months crying about the things she wouldn't be able to do and the life she wouldn't be able to have. Trying to figure out why this had happened, when I had had such a lovely pregnancy, and thinking I must have done something wrong, to cause this. The docs can't explain why it happened, we'll probably never know.
6 years on, and we have finally come to terms with it. Although, she is dependant on us for everything, she's in a wheelchair, needs spoon feeding, still in nappies, and is non-verbal. Her epilepsy causes us no end of worry but is on the milder end of the scale, so we shouldn't complain. The only way she can communicate her needs is to either cry (then we have to mind read!) or she has a special communication book, which has symbols in it that she can point to.
Considering her diagnosis her level of understanding is higher than people give her credit for, and she has a wicked sense of humour. Everybody who meets her falls in love with her, she draws them in with her beautiful eyes and cheeky smile!
Her communication is coming on really well, but she'll never walk - that, I don't have a problem with, although most people see that as the worst thing ever. I just want her to be able to communicate her needs at least. She's even using an ipad at school!
Anyway, I suppose all I'm saying is that, yes its devastating news to hear your child has cp, but time is a great healer and eventually it just becomes part of your life. A different more difficult life but also, more rewarding and you get to learn things about yourself you didn't know along the way.
I hope this is helpful to someone.
PS No offence, but don't read that Holland poem if you're newly diagnosed like I did, I DIDN'T WANT TO GO TO Holland, I don't care what anybody says, it doesn't make you feel any better reading that poem just more depressed (but thats my opinion lol!)
21/05/2012 at 14:48
17/09/2012 at 11:57
I completely agree with you. Really those parents are so brave that they are taking care of their special children with out getting worried about it. Those children are also lucky that they are having such parents.
29/09/2012 at 16:51
My mum's partner has Cerebal Palsy. He is in his 50s, and has only needed a wheelchair for the past couple of years. Although he & my mum now live together, he has previously lived on his own. He drives, he goes out & about by himself, he regularly attends football matches all over the country, though he has now got a helper to go with him just to make it a little easier. His speech is sometimes difficult to understand, but all in all his life is great!
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