Accessories


This time with Max is going quickly and we are into somewhat of a routine here at the hotel.  He goes to his program in the morning and I do a combination of not important things – and I like it that way.

I keep thinking Max is suddenly so much older. He sounds and acts older and even looks different to me. I am finding my normal ways of being with him needing an adjustment. At home, Max is the baby. Even when at school or at play, he is always the one who cannot do at least something that someone else can, the one who needs help finding his way through a task, the last to get there, last to leave, and always, no matter what it is, the one working the hardest.

Even though this is his reality, I have always found myself thinking that his differences are merely quirks.  He moves about slowly, like an 80-year-old man, but that is just how he is.  His positions are awkward, his hands slow to grasp, and movements irregular, but I see them as just him.  His equipment seems to me, at home, merely accessories.

Here… everyone is slower, equipment laden, lumbering to some extent through each task due to disability.  It is seeming neither good nor bad for Max.  He and the lovely boy he plays with non-stop are as equal as two people with CP can be, and yet they never comment. He has not yet measured himself against the others in any way at all. In fact, he hasn’t even mentioned it.

While there is an enormous comfort in not having to explain, having more in common than could ever be explored in conversations over coffee, and not ever having to be afraid, being around the others is messing with my head.  I am finding that here I am not seeing his mannerisms as just his  – as they are the same for all of these children. His equipment is not unique and decorative, it is mandatory.

I think I prefer to think of his disability as just his “style” of doing things.   For some reason,  when he is the only one with CP for miles and miles, it feels more manageable, more part of a regular life. The only reason we are here at all is because he has CP and therefore nothing is regular.  Who knows?  I will just sit with this mystery for today.

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