Monday, 24 August 2015

A Perfect Day

by M.H.

Some days confound expectations.  Today was one of them.  My 11 year old son (who has PWS) headed off this morning to spend a day having fun with his grandparents.  He does the same thing every summer with varying degrees of success.  Some years he returns sullen and anxious, but today came home with a broad smile on his face accompanied by his equally happy grandparents.   

There is always the potential for things to go badly wrong on a day like this.  Sometimes the excitement is so overwhelming that upset becomes almost impossible to avoid.  Sometimes my son's (often unspoken) expectations about what will happen are not met leading to tears.  Sometime the stress and worry prove so exhausting that the outing cannot be enjoyed at all.  

But not today...Today, the sun shone!

The pet farm was as he remembered and as he wanted it to be.  The amusement park was fully operational and he could enjoy all his favourite rides.  His snacks and lunch were as he expected and he was satisfied with them.

Today, my son laughed and sang and talked and joked with his grandparents and glowed with happiness.  

Today, my son enjoyed a great deal of independence.  He planned the day and decided where they would go and when.

Today, my son willing embraced physical activity.  Without having told me of his plan, he decided to bring his grandparents on an unscheduled 7 kilometre (!) walk as part of their day out.   I think he was proud that he was able to do so.

Today, there were no signs of hyperphagia or anxiety around food.  My son  arrived home over an hour after his normal dinner time exhibiting no signs of worry about food or anything else.  On days like this it is almost possible to forget about PWS.  It is certainly possible to believe that it need not interfere with happiness or fun.   

Recognising and taking pleasure in perfect days and remembering  that they are possible makes harder days so much easier to tolerate.  

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