Parenting - the toughest job in the world (and don't expect the little darlings to thank you either)

We are currently entering week 3 of Daisy’s stay at Great Ormond Street hospital.  On the 14^th October she had an 8 hour surgery to her bladder and abdomen aimed at sorting some ongoing problems and creating some solutions which will improve her quality of life.  Thanks to the wonderful, skilled team looking after her the surgery went really well and she is recovering slowly but surely, the ongoing issue, as always, being the management of her pain .  Of course Daisy loves to move the goal posts every now and then, this admission she developed an extreme sensitivity to intravenous morphine which means we really can’t use it.

It’s been so difficult dividing myself between here and home, making sure Andy is eating OK, rushing to meet him at outpatients appointments.  And while our other three children are now teenagers, in many ways they need me now more than ever to be a listening ear and to help source the lost travel card from a distance (I have special skills in this department). 

Conceal it, don't feel it

I have come to realise that over the past year my life has been guided by Queen Elsa of Arendelle.

Yes people, I now look to a fictional animated disney character for guidance.

Time and time again, when it all gets too much and things get me down I channel Elsa, scattering ice crystals into the air

This works really well, try it.  In times of stress remind yourself, what would Elsa do?

It's times like these you learn to live again

It's funny the opportunities adversity can throw at you.  We have found this with Daisy, we have experienced the lowest of lows at times but also have had a world opened up to us that would never have been possible if we had not been the parents of life limited child with her level of complexity (and huge personality!).

Hitting the Wall

Marathon runners know this term well - hitting the wall.  That point in the race where your reserves have run out, you legs are screaming in pain and you have to do all you can to overcome that voice in your head which is saying "you can't do this".

We have hit the wall. Not surprisingly really, 17 rounds of gruelling chemo over 3 days, an intensive course of Selective Internal Radiation Therapy (SIRT), coupled with a very complicated family life is going to have it's toll.

The Medical Symposium, the Ordinary Mum and the story of an Extraordinary Girl

I'm writing this in a somewhat jetlagged state......

Yes!  I made it, following my successful crowdfunding campaign I was able to fly out to Seattle to attend the Costello Syndrome Family forum and more importantly present Daisy's story at the Rasopathies Medical Symposium.

When your child has a rare disease (and an even rarer manifestation of the syndrome) then the chance to meet with other families and to discuss issues with the doctors at the forefront of research into the disease is immeasurable.

It is rare to be in the same room as children and young people who look so similar to my own daughter but at the same time it was bittersweet as it really brought home to me how different Daisy also is to the other children who share her gene mutation.

A Landmark Supreme Court Victory for Children Like Daisy

There was an interim budget last week in the UK.  Another round of austerity measures, more cuts,  more worrying times for those of us, forced through circumstances, to rely heavily on our benefits system.

On the same day as the budget, there was also a glimmer of hope for parents caring for some of the sickest and most complex children in the UK.  You probably didn't even notice it, but there was a landmark victory in the Supreme Court. It unanimously ruled that taking away Disability Living Allowance (DLA) from a disabled child after he had been in hospital for more than 84 days is in breach of his human rights and unlawful.  This was the first time the Supreme Court has ever found for a claimant in a Social Security Case.

Accessible Glastonbury

We are back from another epic Glastonbury, batteries recharged and home to the fabulous news that Andy will start SIRT radiotherapy treatment by the end of the month with a view to trying to make his inoperable tumours, operable.

Focusing on getting to Glastonbury has got Andy through the months of gruelling chemo  and we've come back determined to get there next year (when hopefully The Foo Fighters will play and Andy will meet his hero at last!).

Team Nimmo at the Pyramid Stage

Off to recharge our batteries

Tomorrow Andy and I go to Glastonbury, after Woodstock probably the most iconic music festival in the world..  Friends, family and regular blog readers know that Glasto is my happy place, it's where I can be me, indulge my passion for music, food, dancing, life.

I was so worried a couple of years ago when Andy finally agreed to come along,  I didn't want him to hate the place and not "get" why I love it so much, I needn't have been concerned, he loved it too,  he has since come along to Latitude Festival as well and has truly got the festival bug, aided by the fact that we can really take advantage of the home comforts of our retro VW Camper Van, Charlie.