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Posted: Fri Dec 14, 2012 11:06 am
hi my name is Linda im a carer for my daughter Rhianna she's 14yrs old , we both have cleft pallets and pierre robin sequence but Rhianna has scoliosis and hyper mobility and a fragmented sleep pattern also , we take her addenbrookes every six months on our last visit we was told she will need the operation as her curve is now 40% we go back in january ,im waiting on results for loeys-diez syndrome as we know Rhianna has another syndrome .
hope to chat with you soon i find it very frustrating and lonely being a carer my friends think i cope but the truth is im finding it hard but feel selfish moaning as it's Rhianna going through it all not me ,thanks for letting me join your group
Posted: Fri Dec 14, 2012 11:20 am
welcome to the forum Linda. I understand completely the loneliness of having a disabled child and putting on a happy face. my daughter has scoliosis and had to have her spine operated on, although she is much much older than your daughter. she had her operations when she was 16. She is 46 now, has severe learning difficulties, but with 24/7 care is leading an independent life and is very happy, happier than i ever thought she would be without me.
there are lots of lovely people on this forum who you can talk to and tell anything to and receive nothing but understanding and support. we all like to think we should be perfect, and manage everything, but of course in reality nobody is like that.
lovely to meet you linda. x
Posted: Fri Dec 14, 2012 11:31 am
Hi Linda and welcome.
Loeys Dietz is very rare.
Posted: Fri Dec 14, 2012 2:19 pm
Hello and welcome
Posted: Fri Dec 14, 2012 3:11 pm
Hiya and a warm welcome to the forum.
Posted: Sat Dec 15, 2012 9:46 pm
You will find lots of lovely people here who understand, there is no need to fell lonely anymore.
Posted: Sat Dec 15, 2012 9:57 pm
Hello Linda & welcome to the site & forum.
As a newbie myself I'm really pleased I found it because I've already had some good advice. I'm from a generation that didn't seek help as it was seen as a weakness & I tended to just struggle along but I'm pleased I've seen sense & started to ask for advice on anything I'm not sure about.
To my mind the fact that you're discussing your problems is not moaning.
Posted: Sat Dec 15, 2012 11:08 pm
Hi Linda, I agree with caravanj. People lucky enough to have children without any problems moan about the most trivial of things - they just have no idea whatsoever about what it means to have a child with special needs.
Posted: Wed Dec 19, 2012 3:41 pm
thankyou all so much for the welcome i look forward to chatting too you all x