On rubbing feet and touch and other musings….

My Monica was 7 when she was diagnossed (she’s now 10 and doing wonderfully!!! 🙂 ) and she has always been a cuddler and liking to have her feet rubbed, tummy rubbed, etc. When we first got her home from the hospital, I was trying to help her get comfortable and I remember trying to rub her feet and legs – they were so cold and I thought I was helping her. She just started crying and telling me to stop because it hurt so bad. I ended up crying with her because it was just awful to not be able to make her comfortable. She described it to me later as if she was on fire and no matter what she did or we tried to do for her, it just made it worse. And I’m supposed to be able to make her tears go away, not make them worse, ya’ know? We learned to try several positions for her to lie in bed, sometimes heating pads helped – but then again, they also at times made the pain unbearable.

Eventually, she did come to a point where it was a good feeling again – especially after a bath – to have her feet rubbed. She still is touchy about the rest of her body though which is quite sad……such a bonding mechanism taken away…..

I think GBS is a chameleon of sorts…..for what my Monica has been through, it seemed like just when we figured out what worked and what she needed to do, something changed and we were at square one again. It was a long road and every so often, she takes a step or two backward. Stress and fatigue definitely play a role in how she does from day to day. She has learned to really listen and tune in to what her body is telling her – and I’ve learned to watch and see what she is not listening to…..those silent signs that her body is needing quiet and rest. Her eyes drooping, her shoulders kind of tightening, her walking turning more cloddish. And that’s when I step in and make her take a break for awhile…..which isn’t always easy with her active spirit and independent nature. LOL 🙂 But, it’s those signs to watch for, and even if she says that she is okay, be aware enough of who she and what her limits are to step in when necessary.

My Monica’s teachers the last three years have gone through a learning curve as well. They have to realize and trust that when she says that she is tired, or cannot participate in the phy-ed class activity or playground activity, that it is truly the case. Some have had the notion that she was trying to get out of whatever the activity was – and it’s then up to me and her dad to be her rock and make it crystal clear to them that even if on the outside she appears to be fine, she has to be given the benefit of the doubt and if she says she needs a break, then she needs a break. So, teachers, please listen to what the patient is telling you – gripping pencils at times is difficult; climbing stairs one day will not be an issue, and the next will seem like an impossible feat; standing for long periods of time is not always possible, etc.