Keep Calm and Buy Bras

Sorry about the lack of photos, i have some beauties but can't upload thanks to insufficient space - we have an awful lot of pictures on our hard drive...  will add them in later.


My cousin gave me a useful piece of advice about surviving this hideousness and it was this - to keep larking around.  I am not sure that it is appropriate to be so flippant during this horrible period of time but if being dragged into Guildford for some retail therapy a good lunch and a giggle with my friend Claire is part of this larking around strategy then it worked for at least some of the time today.


I am not entirely sure how we are going to get through the next few weeks but keeping on putting one foot in front of each other and getting through each day as best we can seems to be a reasonable way of tackling things.


Anouk is amazing, she is still going to school with the help of her wonderfully supportive teachers, teaching assistants and head teacher - and she loves it.  I had the pleasure of going in with her last week for one afternoon and it was amazing to see how, despite the fact she is miles behind her friends when it comes to her physical aptitude she still calls the shots in games and play and she is as sharp and as wise, as mature and as funny as ever.  The school has a pool and it was open last week, Anouk loves bobbing around and managed two swims a day for a couple of days.


We were busy with scans and hearing tests and lots of after school clubs last week and then went to Marwell Zoo on Friday night for "Dreamtime"  with lots of other "special" families.  Neave soon realised the "special" nature of the situation and although it was confronting it was also very normalising and comforting to see so many other families living their lives with a member of their family requiring extra support to get through the day.  The girls and got to hand feed giraffes, they were beautiful.


Richard has been working hard, putting in long hours and working over the weekend but things slow down on that front this week.


Anouk is now very unsteady on her feet, she needs assistance to get around and should use her wheely walker at all times but tends to take off on her own - she falls a lot.  She is no longer independent with eating and so we are feeding her, her speach is slurred and slow, her eye looks very dodgy as it strays sideways and as she can't blink and is very reluctant to have eye drops and so it is blood shot most of the time - not a good look.  Anouk knows what it going on but does not appear to be distressed or concerned about it, she just asks for help from any willing adult and gets on with it.