Sunday, 22 May 2011
I feel bad for coming back to my blog when I have negatives to report. Ultimately I want this to be an uplifting account of raising a child with C.P, but the truth is I don't always feel uplifted. I am finding things tough at the moment. Its largely due to the same old problem of Elin not sitting in anything for any length of time. On the face of it this sounds trivial, but its anything but. It is affecting my daily life, and Elin's, massively. She is nearly three, she is over two stone and I can no longer carry her around when she decides she doesn't want to lie or sit down. This in turn means I have to put up with the screaming if I need to do anything and,as I have always been hopeless at putting up with Elin crying for any reason, I have to cut short what I am doing and pick her up, thus pinning myself to the sofa. She stops immediately when picked up, I hasten to add. It's frustrating to say the least. Perhaps the worst manifestation of this problem is that we cannot go out. Literally. She screams blue murder from the minute she is strapped into her car seat to the minute she gets out, however long the journey. I could actually put up with that if she would only sit in her wheelchair when we reach our destination. But she won't. She twists, thrashes about, screams, sweats and eventually starts shaking which looks exactly like a seizure (but isn't). This means that whenever we go somewhere we have to stop every few minutes to get her out, calm her down and put her back in. She goes stiff, shakes and flails her arms around which not only do I hate to watch but of course it draws extremely unwanted stares and looks of sympathy in an already stressful situation. When she does this I know how unusual and scary it can look. I dont want people to see the spasming disabled child and look away, I want them to see her beauty and her lovely smile and I want them not to feel sad for us. And I want to not feel sad for myself and for Elin, but this situation is making it so difficult not to start sinking into a pit of the dreaded self pity. Exhaustive internet research brings no answers and neither do doctors or health care professionals, everyone is basically puzzled. All I know is it's got a lot worse and though this may be a wonderful and welcome nod towards increased awareness on Elin's part, the sad truth is it makes for a very un-manageable day to day life! What will happen when I can no longer lift her at all? I cant even imagine. ;-(
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