Keep calm and put the kettle on…

160 mile round trip today to get the news that we knew was coming. There isn’t much more the medics can do for the kids feet. They have what look like pensioners feet: Covered in bunions, freezing cold and contorted from malformed bones. They work, the feet, they actually do what they are supposed to do but they are a bit ‘bargain basement’, you know…a bit rubbish with no longevity but nothing else is available (like shopping for munichies in some soulless grocery leviathan at 3am when you’re drunk), crap but you need them.

Shortly we’ll be moving to a bungalow and the tortured Hell that is a staircase shall be no more!  So it’s not all bad, lovely new home on the horizon (subject to contract!!), Yuletide festivities looming and tonight we have pudding! Now, I just have to make it to Christmas Day without throwing a brick at the John Lewis orgasmic consumerist pornography advert…then all will be well!

‘Two in a million’ 

  1.  ‘My kids are pensioners’ sum up our life. These smiley painted characters are my kids, Fergus & Gwen. They have a very rare form of progeria, called Cockaynes Syndrome, meaning their lifespan is shoe horned into about two decades. They were born normally then slowly, they fell off the growth charts. Now teenagers, they are partly blind, deaf and disabled and the size of Hobbits (only with less hair on their feet!)

    Learn more about CS:http://www.amyandfriends.org/amy.htm