Pippa Rea

Pippa's Journey with a Brain Tumour

It’s Hard

We are trying not to be hermits and still like little visits from friends to brighten up our days – even if it’s just to sit and watch an episode of Glee or Modern Family. Sometimes it may take me a while to listen to a voicemails and I may not be able to reply to a text or an email bit I thank everyone for thinking of us and trying to help in a situation that is helpless.  We have a sign to pop outside the front door if it doesn’t suit and alternatively, I’m not too afraid to turn anyone away either!

Pippa can’t eat anything much other than jelly and ice cream nor can she drink.  She cant walk, talk or move her legs or the left side of her body.  Her hearing is minimal at best and her iPad communication is dependent on whether or not her right hand and arm are having a good day.  We adjust accordingly with patience and understanding; finding different ways of doing things to help her manage.  She is still determined to go to school which we keep short and do on a nice afternoon so we can make our way along the bike path in the sunshine.  She tires easily but playing a few games now and then is possible and we have even managed a spot of cooking on her lap in her recliner chair.  Pats and kisses from Nibbles and visits from tiny little cute puppies have been special too.IMG_5973

This week she is looking forward to going to Tony’s Sungold Field Days on Wednesday just like she has each year and of course the most exciting event of the year, her 11th birthday party of Friday 13th.

The hardest thing for us all is the frustration over communication.  It is just heartbreaking.  Her mind knows exactly what she wants to say and in typical Pippa determination it is important to her that she types it with correct grammar, complete sentences and spelling – no short cuts.  It’s hard.  Sometimes I wipe Pippa’s tears and sometimes she wipes mine.

 

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