Coping as a parent,- diplegic cerebral palsy - help and support please..
I'm new to this forum, but would really like to know how other parents cope with dealing with the day to day worry, concern, heartache when your child has cerebral palsy, and the effect it has on the whole family.
My beautiful daughter is 7 and has diplegic cerebral palsy, she is effected by the following:
Trips/falls, failure to walk long distance without pain, pain as an after-effect of exercise, poor concentration and emotional understanding, disturbed sleep, swallow difficulty leading to constant choking, asthma, dribbling, poor speech, and now awaiting result of video scan (can't pronounce the word sorry) to diagnose problem with pallet which may require surgery. She also has a pineal cyst which has to be monitored every 18 months to check for growth, which is an added concern.
She is amazing, but is not eating at all it feels like at the moment, her diet has always been difficult to manage but of late I am in total despair, I don't know how to get her to eat a meal and feel that everything is getting worse with her.
I just want to help but as a busy working mother of two feel that I am failing and most importantly letting my daughter down as I don't feel I have the time or the energy to be doing as much as I should for her. I want to do so much more. But I also feel I am letting her older sister down as she takes the brunt of it at home and bears a lot of the responsibility in looking out for her sister - and I don't feel this is fair, but don't know what else to do.
Because of her age and the difficulties she faces I am also concerned because I can see she wants friends but is often alone in school and no-one wants to play with her, her little face falls when she realises the other children don't want to play - and I hate to see that she is starting to realise she is different.
How can I help, should I explain about her condition? But because her understanding is so poor I just worry it may make it worse for her as she may get distressed or more confused?!?
Thanks for listening :)