Trying to keep my head, when all around me are losing theirs.....

Daisy had another hospital stay this week, another surgery, another anaesthetic.  She had to have her Hickman line (the central line tunnelled into a main vein which rests near her heart) removed and a new one place in a new vein as the old one had been repaired once and was at risk of breaking and also was colonised with bugs which we were just about keeping under control but which could have caused sepsis at any time.

I'm losing count but by my reckoning that's 9 central lines she has had in her life (with the scars of insertions and removals crisscrossing her chest and neck to prove it) and close on 60 anaesthetics for various surgeries and procedure.....more than the majority of the human population will experience in their lifetime.

Spontaneous Planning

We are at the end of another half term and have made it through in one piece.  I am so grateful for every school holiday we get to spend together because we have lost so much family time over the years. This time of normality has also shown us how different our lives in the real world are as we try to function as a family, this week provided many examples and made me realise that what I am constantly trying to do is spontaneously plan in order to do the normal childhood stuff other families take for granted.

It can't have escaped anyone's attention that there is a lot going on in my home town of London at the moment - all this week we have had the Diamond Jubilee Celebrations then in a few weeks time the Olympics start.

Volunteering - it's a two way street

Not many people know this, and I don't really talk about it (not because I don't want to, I guess talking about my family takes up most of my time!) but in what minimal spare time I have in my life I am a leader of a Girl Guide Unit.

Some of you may be new to this blog and not realise how little spare time I actually have,  if you read some of the old posts and the All about me link the you will see that my life is very full on and spare time is something of a premium in my world.  But being involved in Girl Guiding is something very important to me and so I make time for it.

Actually, thinking about it my experience as a Girl Guide has really shaped a lot of my approach to life although maybe I didn't know it at the time.  Like many women my age I was a Brownie (no Rainbows in my day) and once I turned 10 I moved up to Guides.  Those who know me well will not be surprised to learn that I embraced everything about Guiding, I did every badge I could, I entered every competition, I read my Guiding Handbook from cover to cover and I achieved the ultimate Guiding accolade - The Queen's Guide Award.

Yes, I have kept my old Guide uniform!

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.