Saturday, 16 January 2016

Serious Conversations and Sticky Suppers!

 
Today saw us enjoy a little lie and before heading off to Ruislip to see second/third cousins.
I always enjoy the scenery as we get near to their home...for being so close to London, its very rural.
 
 
My cousin has a 38year old son with severe cerebral palsy.
He is non verbal, unable to move independently and completely dependant on his very loving family.
He is always happy and with the aid of a communication board can answer /ask basic questions.
This week he had a new piece of equipment arrive...an exercise cycle he can use from his wheelchair.
His retired parents are completely dedicated to him ( and of course their other two children and five grandchildren) and despite the many set backs trying to get his feet secured into the pedals....they persevered, knowing what pleasure this new outlay brings him.
It was very evident how much he enjoyed his legs being moved....the cycle is able to detect when the rider is putting in some effort, and so reduce the input from the machine. Its a very clever piece of equipment and will add some extra pleasure to his simple but happy life.
Being around a family and a person with such disabilities always makes me thankful for the independence both myself and my family have. Even though Teen Two's independence is limited compared to his peers...it is far more than our cousin has.
 
 
The dinner table was laden with food ( this was only half!) and I was particularly looking forward to the Cauliflower cheese with brioche, pancetta and maple syrup!
It is a James Martin recipe found here
It was very nice and I can't wait to try it out myself!
 
 
 
The five year old granddaughter was getting a little frustrated with her older brother, so to distract her I asked if she would like to decorate the dessert for me....she jumped at the chance and was very pleased with her results...taking it to everyone to see.
When she put the maltesers on I  could see she was eager to eat one...so I said "I think you should try one, just to make sure they taste ok...we cooks should always taste our food first don't you think?"
When we then opened the blueberries she said "I think I should test this one don't you?"
And again...when the raspberries were opened "I think I need to test this one too!"
What have I started!
 
 
In the summer house there is a pool table...so Teen Two had hubby enjoyed a quick game
 
 
What a cool room to have at a Grandma's house aye!
 
 
After pool, there was time for a game of swing ball and Teen Two really enjoyed this once little one had finished with it, and he played out there into the dark!
 
For us adults it was a time to chat...and our cousin knows how to chat! Hubby said his ears were ringing when we came home!
Much of the time was spent talking about the serious subject of how to ensure continued care and support, both physical and financial once they are no longer here.
They are going to meet with a solicitor to talk about setting up a trust, otherwise it would appear his share of any inheritance would not necessarily go to him.
It was a sobering conversation but  a necessary one.
No one likes to think about such things, but with a disabled child its essential that proper advice is sought and strategies put in place to ensure the best possible care is given when they can no longer do this.
 
 
 
The journey home was very cold, thankfully the car heater kept the cold at bay, mostly.
The M25 had some speed limit reductions much of the way, but we made it home safely.
 
 
Once home, with our tummies still quite full from the huge lunch, just a light snack was all the Teens wanted, and Teen One decided to toast some of her giant marshmallows by the fire....they were so huge and sticky she needed a knife and fork to eat them!
 
 
 
 
Daily Blessing
Tuesday January 19, 2016
Today's Verse:
   ...at the name of Jesus every knee should bow, of things in heaven, and things in earth, and things under the earth; And that every tongue should confess that Jesus Christ is Lord, to the glory of God the Father.
 
 
 
 
 
 

1 comment:

  1. Sounds as though you had a good day. Well done. I can imagine all the conversations, interesting! Most of us have a fairly simple task of dividing our 'goods' between our children for them to enjoy. In the case of our cousin it is much more complicated, but I am sure they will work it out as they have always done. Xxx

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