Changing Seasons

Carolyn Voisey's avatar

by Carolyn Voisey

The way the UK weather is behaving you’d be forgiven for thinking we’ve had summer, then spring again and now we’re into autumn! 

From 35C heat to cool, damp 12C in the blink of an eye… It does have to be said though, my garden is loving it. My son, however, is not.

Bless him, he loves the sun but this rapidly changing weather triggers seizures.

And he (like me) has hayfever.

So all in all he is not currently the happiest of chaps.

I’m not actually sure which season I dread the most where Sam is concerned – winter because of the inevitable colds and chest issues, or summer with its oppressive humidity causing him discomfort and more seizures.

In the past the answer was always winter, but since he’s had a PEG the chest infections are a lot fewer and further between and last winter was actually pretty good health-wise…

but the past few weeks of late spring/early summer have seen him utterly miserable for most of the time.

It wouldn’t be so bad if he was mobile or could at least sit up unaided, as he could go into his paddling pool and cool down but he can’t unless one of us are with him…

and no-one likes to be plonked in a cold pool without the option of leaping out again swiftly!

So we have been relying on fans to keep the air moving, baths to help keep him comfortable and cool, and sheltering inside out of the sun until late afternoon/evening.

We’ve just had half-term and I cannot wait for my boy to go back to school on Monday…

I love having him home, but like any child he gets bored.

Unlike most he can’t move himself away from an activity if it isn’t interesting him. He’s a captive audience, whether he wishes to be or not.

It’s exhausting, finding new things to do with him, all the time watching for the subtle indications that he’s had enough/bored/tired/has a seizure coming on.

Bored of painting? OK, let’s read a story… would you like another one? *slight shake of head*

OK, let’s go for a walk… que face that says don’t want to (but if we don’t get out of the house Mummy/Daddy is going to scream)…

At School they have equipment and staff to enable them to do things with him and the other children that we just can’t at home.

So, we have one weekend left to enjoy being together before the Tinker heads back into School on Monday... let’s hope its decent weather so we can do something fun.

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