I have Costello Syndrome, Costello Syndrome does not have me

I have amended this quote from one I saw on the back of a running vest as I ran the Bupa London 10k on Sunday - the quote I saw was "my name is Jo, I have MS, MS doesn't have me".  That really inspired me.

If Daisy could talk fluently and tell you how she felt then I think she would say this because this is how she lives her life.

Every single day is a monumental challenge for Daisy and truly I do not believe even those closest to her know what a challenge it is - I guess only Andy and I as her parents have a little inkling of the mountains Daisy has to climb day in day out just to squeeze every moment out of her day and be the little girl she wants to be.

How I got my groove back



In a couple of weeks I will be 44


Yes - hard to believe isn't it!!!  I don't know what I imagined my life to be like at 44 but there are a lot of things I did not expect it to be like. While I knew I would proably have more than the average number of children, I did not expect to have two with additional needs.  I expected to start slowing down, not speeding up, I did not expect to be still changing nappies or carrying children around or making up milk feeds, I certainly did not expect to be performing the sort of medical procedures that I do day in day out, or needing the mental agility required to defuse an autistic meltdown before it becomes full strength, I expected to be working part time and reducing my hours, not working all the hours god sends for no money, I definitely expected to have slightly more disposable income ....

Throwing starfish into the ocean.....




I bought myself this necklace this week, I had just picked Daisy up from an overnight respite stay at Shooting Star Chase and dropped her off to school and I was in town picking up some bits I needed when I saw this necklace in a window, and I had to have it.
It wasn't that I wanted to treat myself to something pretty, it was the starfish that drew my attention.  I have always loved starfish, they have a special significance in my life.  I remember happy family holidays on the Gower Peninsula in Wales rockpooling with my Dad and finding starfish and anenomes and sea urchins and taking our sea treasure home to look up the names and species in my Spotters Guide to Wildlife Book.

You are beautiful, no matter what they say...




I'm not really the biggest fan of Christina Aguilera but her song Beautiful has very special significance for me.  When Daisy was born she was immediately transferred to the neonatal unit at our hospital.  There was always a radio playing in the background during the long weeks she stayed in the unit, when she arrived it was just before Christmas and the soundtrack to those early days was all the festive favourites, but as the days wore on and the Christmas season passed (and the tree outside her window began to grow leaves) the songs were replaced with the regular mix that is endlessly played on Magic FM, London's easy listening station.  And this song seemed to be on a lot....

"You are beautiful, in every single way, words can't bring you down..."

A Good Day

Yesterday was a good day, not anticipated to be as it involved several appointments at Great Ormond Street.  As we live in London, albeit in the suburbs, our appointments tend to be scheduled for later in the afternoon, however anyone who knows London traffic knows that it's often easier to drive out of London than to drive around London.

Having picked Daisy up from her school it then took me 90 minutes to drive the 14 miles from school to hospital, 90 minutes of roadworks, delays and diversions with a little girl in the back of the car who doesn't like to sit still for too long and no-one else to entertain her.  The only CD in the car suitable for Daisy was the Singing Hands Christmas CD so on a rainy May afternoon, stuck in gridlocked London traffic Daisy and I sang and signed Christmas songs - shall we refer to it as a little seasonal rebellion rather than the actions of a desparate mother?

Of course once I drove around and around the streets of Bloomsbury looking for a place to park which the ever vigilant Camden Council parking posse would approve of, I was late for our first appointment.  This was with our Stoma nurse, a very important appointment as with four stomas Daisy needs a lot of help from nurse specialists.  I was even a bit late for the second appointment but I always assume the clinic is running late (normally delayed by parents with me with a list of questions) so it wasn't too bad.  Appointment two was Orthotics.

This be the Verse....




I remember being about 8 months pregnant with Xanthe , Theo had just turned two, I was wracked with guilt about bringing another child into the mix and turning his world upside down.   How could I share my love for him with another? Would things ever be the same

...these feelings of guilt are what many mothers feel when they think about or go on to have a sibling for their first child, it's that fear that we are not doing the right thing by our child, that they only get one shot at a childhood and our actions or inactions would ruin it for them...




It was a similar feeling in 2004 when we were told at our 10 week scan that we had a 1 in 4 chance of having a  child with Downs.  My first reaction was that we had ruined the children's lives, that things would never be the same, that the dreams and hopes and plans I had for my family were all shattered...

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