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...

A letter to my son.....

A couple of weeks ago, someone somewhere googled “I Wish I Didn’t Have Aspergers”. The phrase popped up in a blogging dashboard and struck the blogger as being particularly sad. She wished she could have answered.


The result has been an autism positivity flashblog, going out today, 30th April, where bloggers who write about autism and aspergers write a post which hopefully anyone googling "I Wish I Didn't Have Aspergers" would find support and encouragement from a whole community of people who understand, or are trying to understand...

"I wish I didn't have aspergers" is something I guess my son has said,or thought, or googled at some time so I thought I would write the letter that I would want him to see if he felt so low that he had to type in those words to see what came up...

Dear Theo

I remember when you were born, our first child, our boy, our son. We were filled with hopes and dreams for you, Daddy wanted you to be an Arsenal Striker, Fighter Pilot and Doctor all rolled into one (it's OK, he wasn't serious, well maybe not about the fighter pilot bit...). But what we wanted most for you was to be yourself.

Why do I do it?

So why do I write this blog and bare my soul to thousands of strangers week in week out?

I was pondering this following a recent thread on the Mumsnet Site and have found myself looking back over some of my old posts over the past week or so. It's only really in the past 6 months or so that I have actually "come out" as a blogger within the blogging community, although the reality is I have been writing for years.  I wrote my first  post on the 1st January 2007 for an earlier blog I had started but my serious, regular blogging began late in 2008 when our lives reached another turning point with Daisy.

Prior to that time, Daisy's life was following a "typical" Costello Syndrome course - lots of hospital stays and already she had undergone several surgeries, but my old blog was already documenting our worries about Daisy's gastrointestinal issue and the lack of either improvement or stability which is normally seen in the syndrome.  Similarly, Theo, our oldest son,  was on the gifted and talented programme in his junior school and we smiled at his quirks and obsessions putting them all down to the fact that he was so bright and his anxieties we blamed on being the eldest of four.  We had no inkling of what was to come.  A pivotal point in our life with Daisy, which was already complicated came in September 2008 when she was rushed into hospital with yet another infection and then soon after transferred to Great Ormond Street hospital where she started Total Parenteral Nutrition, the system of delivering nutrients directly into the bloodstream when the gastrointestinal system becomes unfeedable.  It was at this point I began to blog in earnest, here is the the first post I ever wrote for Was this in the Plan? My first blog post

Carers - no time to complain

There is very much a theme about the role of carers going on in blog land this weekend with two fellow bloggers inviting posts to highlight life as a carer.  The timing was great for me as this weekend I'm on my own, Andy is away working in the States and I am at home with all four children.

This is hard work.   Today I have changed 7 stoma bags, 1 catheter, I have given two intravenous medications, disconnected an intravenous drip, put a new drip up, administered countless enteral drugs, carried my daughter upstairs in order to bath her and then carried her downstairs to her bedroom and the list goes on...Factor into this the needs of the three other children then preparing meals, laundry, shopping, homework, there is very little time left for me.  I survive on coffee and chocolate and the children's left overs.  It's why I go running, it actually gives me a break and I'm itching to get out running this weekend but can't because I'm on my own and Daisy cannot be left with anyone other than a trained carer, and that's only when she doesn't have her TPN running (when her drip is connected she can only be left with Andy or I or a qualified nurse).

Mixed Emotions

Well we are back from holiday and survived intact - just.  Daisy as always continues to amaze us with her resilience, courage and positive outlook against all the odds.  She loved being on holiday, she loved the ferry and our little cabin, she loved the apartment, the beach, the places we visited, just being with her family but most of all she loved sleeping in a little bed next to her Mummy & Daddy - that was the most exciting thing for her, to be able to reach over in the middle of the night, tweak the duvet and tell me that she is Peppa Pig on holiday!!!

We are so proud of how Daisy adapts to new situations and takes it all in her stride.  Of course it was hard work; broken nights, juggling meds and IVs and TPN with family plans, but we survived and we can't wait to do it all again, sadly however, we have agreed that this is our last holiday as a family.

For a boy with Aspergers, who has sensory issues and craves routine, darkened rooms and familiar surroundings, smells, tastes and objects, a holiday in France with a boisterous family was maybe not such a good idea.  Theo had recently started on regular medication to help with his chronic migraines and to cap it all he had a bad reaction to the tablets which exacerbated his asperger traits meaning that his sleep patterns were all out of kilter and his anxiety levels were heightened resulting in several high octane meltdowns.  Not good in the confines of a small apartment!

A Military Operation

We are going on holiday, a real family holiday.  This will be the first holiday in a long time.  We have been very fortunate to have two holidays in the last few years but both of these were through two amazing charities Caudwell Children and Torbay Holiday Helpers Network.  These were supported holidays with organised trips, support and back up, we didn't have to do too much thinking or planning and there was the constant reassurance that there were people around to help us if things went pear shaped.  This holiday is a normal, family, self-catering, travelling by ferry, week in France - eeeeekkkk!

We love France, we love the beach, we need to get away, so a few months ago we started working on how we could manage a family trip across the channel.  The first thing was insurance.  OK so it's France, it's hardly the other side of the world, and theoretically our European Health Insurance Card would cover any medical treatment Daisy or the rest of the family would need.  Yes - theoretically, until you start thinking about scenarios...so, what if we have booked our ferries and are unable to travel because Daisy is unwell, we cannot afford to lose several hundred pounds.  What if she has a line infection or septic episode while we are away, well yes she could receive treatment in a French hospital but if she needed a new line then she is tricky to anaesthetise, she has had numerous line insertions and can only really have new lines fitted by the Interventional Radiology Consultant at Great Ormond Street..what if, what if..... When we started going through the scenarios, good travel insurance is essential.  While we do as much as possible to minimise the risk, there are so many elements to Daisy's health that are out of our hands.