I just don’t get it?

So, for eight years have been thinking about CP and reading about it and talking about it and sometimes I think I can explain it ( as I often do) and then there are these moments when all the understanding seems to evaporate and I am still left standing with a big “Huh???” on my face.

This is happening to me here.  There are so many kids here with CP that it is making my head spin.  I stare at them and then I stare at Max and nothing is making any sense.  Sometimes Hun and I look at Max doing something crazy like climbing monkey bars or doing somersaults or even flipping over in his walker on purpose and we cannot for the life of us figure out how a person who can do all that cannot stand up.

The children here are similar in many ways but none of it helps really to understand Max and how his brain is working or will work.  Many of the kids have severely contracted muscles and tightness that never seems to change – classic CP stuff.  Max doesn’t have that.  He can be very tight and he can be very relaxed.  Others have legs and arms and hands and feet that all seem to be equally involved – making for a difficult, but understandable disability.  Max’s hands and arms, while not entirely perfect, work well enough to cream anyone in  video games.  He may not yet be able to pick a lock, but he can sure dial a phone.

Others are smart and do well enough in school to be in inclusive settings, but they seem to do it with enormous effort.  Max does well in school, with more effort than the others, and sometimes needs to be reminded to focus, but mostly he does school like any other child.

Those here who walk well, seem to do so only after several major surgeries to correct bone and joint malformations. Does  mean that they were seriously incapacitated, but now they are not?  Max has been spared surgery thus far but voluntary surgeries are still a possibility.  Those who walk well, usually also talk well, but sometimes their hands don’t work making other equally important tasks difficult.

I cannot make sense of this brain injury.  I know the physiology of location in the brain and timing before birth and all of that, but what it does to the person seems to have no rhyme or reason. The severity of some makes Max seem even more of a mystery.  Why, why, why, when he can do so much,  there is still so much he cannot do?

I do know that these other moms love their children as much as anyone could love a child and as I do, likely see nothing but b
eauty in their own.  But, I still can’t understand why this boy cannot stand up.

2 Responses so far.

  1. It is not your fault that you do not understand ‘cerebral palsy’ but, as it looks like you are beginning to twig the fact is that there is no single, unitary condition. At best one can say ‘cerebral palsies’, or the ‘cerebral palsy conditions’, but that does not get one very far. As for ‘brain damage’, what kind, where?

    Something (unknown) happens to a child, with particular manifestations within that child’s motor sphere, leading (as I see you are also beginning to twig) to their own developmental effects according to that child’s particular and personal experiences of learning and socialisation.

    I suspect that this is about as far as science can take one in a general understanding of what is ‘cerebral palsy’ (a term of convenience rather that an explanatory term). The important task is to explore what for a given child and family might help…

    Frustrating, unsatisfactory, yes. But the fault is not yours.

    Andrew Sutton.

  2. wearingcostumes says:

    Thank you so much Andrew – we keep trying every day to make each step easier. Keep reading!


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