Love Christmas…Hate Winter

I have never been a fan of the cold and feel it straight away, before Isabella there would be the battle of the central heating being turned on by me and off by Paul. It would all be very sneaky and underhand, with neither of us telling the other we had turned it off or on. Now we have Isabella, it stays on and Mummy wins!

Isabella isn’t a fan of the cold either, as it means she has to be wrapped up in order to keep warm, but wrapping up, means Isabella is restricted. Her (hypertonia) high muscle tone in her arms makes putting on clothes tricky at the best of times and adding layers and a thick winter coat only complicates the matter. Underneath all her clothes and winter coat Isabella can barely move her arms. The high muscle tone in her arms means there is too much tension in the muscles at rest. The muscles are tight and tense even though they are not doing anything.

With the cold weather come the colds and the coughs. When Isabella catches a what would seem a simple cold or a cough it can knock her for six. She loses her appetite, has restless nights, as she struggles to breath or gets upset and frustrated when her coughing keeps her awake. Sometimes her coughing is so severe it can make her sick. A lot of the time it takes her weeks to get over them, as they usually turn into a chest infection.With her feeling under the weather she also doesn’t feel like doing anything, which is understandable, however by her not wanting to do her daily physio exercises she becomes more stiff than usual. When Isabella is feeling under the weather not only does she lose her appetite she loses a bit of her sparkle.

I made the mistake on Monday of telling someone Isabella is all well and snot free and that she has been for weeks. I obviously tempted the hand of fate, as that night Isabella woke with a raging temperature and a runny nose.

Isabella is not the only one who struggles with this time of year a lot of her SWAN friends also battle with the winter season. So I wrote this poem and dedicate it to Isabella and all her SWAN friends.

To skip this season would be great,

Our SWANS get in an awful state,

 

With noses filled with terrible snot

and feeling cold and then too hot,

 

they can’t cope and struggle to breathe,

hearing ‘it’s just a cold’ makes you seethe,

 

Bring back summer, it was such a breeze,

No colds or coughs and without a wheeze,

 

They don’t want to play, stand or sit,

And have a really bad time dealing with it,

 

For some it’s much worse, to the hospital they go,

A place where time drags and everything is slow,

 

They struggle to sleep and get their rest,

It really puts SWAN parents to the test,

 

Just when you think it’s finally gone,

They go and catch another one,

 

We really dislike this time of year,

And cannot wait until spring is here.

 By Tracey Gardiner

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