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.
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.