Wednesday, 27 March 2013

Well Hallo there:-)
 Its been a while. How are you ? Things change, time moves on. Last time we were here, I was taking on the world via the cubs. Last night  I held my last meeting as Cub Scout leader, a little sad but as they say "when one door closes" , somewhat ironically as I sat here once before, I am just about to watch the ever entertaining jezzer.
Life is still the metaphorical roller coaster it once was.  Let's see......My amazing Beth, last year she gained her first GCSE A grade, aged 14 an amazing result, although she was happy, she was not amused because she was one mark off an A*.......bless her (an A mind you.....pretty incredible). We had our rug dragged out from under our feet recently, a visit to the hyper mobility expert in Bath opened up a whole new can of worms, the diagnosis we have worked with for so long has been changed, we are now looking at the possibility of Ehlers Danlos Syndrome.... A very different and much more complicated prognosis, apparently her lovely soft skin is possibly a symptom of something much more serious. But as we have done before we will do our best, we have a long way to go, lots of testing, genetic profiling, physiotherapy and a whole herd of specialists. After chatting with an old friend with a far closer view of EDS than anyone should have to experience we are looking at "smart crutches", if Bert has to use crutches long term she will have the best. Amy.... Wow ok, my little blonde loony is growing up. Still the gentle caring, self sufficient creature, she is getting taller by the day, and tbh if she gets any thinner she may well dissapear, and yet she eats more than the rest of us. Yesterday she took part in a trip to Bristol university as part of a gifted and talented trip, her talent... Drama, are we surprised ?..... I think not. I was lucky enough to watch a show at her school, she was part of a student created version of "walking in the air"..... Cue music and little girls swirling around the stage, Amy and her best friend are stood at the side of the stage wearing onesies.... Then the singing begins... A voice which while untrained, held notes that professionals work to achieve, she looks at me and grins, and my heart melts. This little creature so undemanding and easy going revealed a talent which left me wishing that I could sign her up for stage school tomorrow.... Watch this space. My Theo-lump.... Dear god why does no one tell you about the difference between the sex's? My little man is now heading at breakneck speed toward his seventh birthday, school reports state he is good with computers and mental maths, his handwriting isn't great so as a result he uses computers to complete his written work.. Incidentally he excells at IT, now there's a shock:-)  his teachers tell us he would benefit from being better organised, I think I may be guilty there.. Never mind lumpy we can be disorganised together. Monday will be Theo's day, if all goes to plan hopefully its a day he won't forget, but shhhhhhh right now its a secret:-)
Other parts of life rise and dip, but my 3 amazingly beautiful completely unpredictable creatures continue to amaze and baffle me, they make my heart swell so much it could burst on a daily basis. Summer comes (its Britain ok!) This is our time of year, picnics in the park, walks up the tor, feeding the ducks and a million other small things that fill memories.
Take each day as it comes, grasp it with both hands and never let go, because otherwise one day you might look back and find its left you behind.
Enjoy this beautiful sunny if freezing cold day, as jezzer would say, I am for today out of time.

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