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.

When carers get sick

I've got yet another chest infection, I feel really rough and no doubt, thanks to my asthma, a prescription for a course of steroids will be on the cards by Monday.  It took all my human strength to get Daisy to her respite at the Children's Trust on Friday.  Respite that had been booked initially because I was supposed to be running an overnight Enduro race on Wimbledon common, when an ongoing achilles issue scuppered those plans we then planned to visit friends in Cambridge and have a weekend away, when chemo scheduling scuppered those plans I arranged post birthday drinks with some of my friends - and now this lurgy has scuppered those plans.

If I worked full time I would have been signed off sick, but when you are a carer and people rely on you to make sure you have meds or food or to speak to doctors on their behalf then you cannot be sick.  It just all became too much yesterday as I felt so poorly and fed up about our situation. Fortunately we are all made of pretty strong stuff in our little family and they all rallied around showing through actions (and not necessarily through words) that they do care and appreciate what I do.

Words came this morning however in this lovely post my husband put on facebook, it sums it all up really. 

It's carers week and it's great to see a campaign to highlight the huge need to look after those doing the caring for people with illness and disability. 

This weekend hasn't been the happiest as the one person holding our shit together gets sick and things start to get difficult. That accumulated stress and pressure on carers affects not just us but shared by hundreds of thousands of people in this country doing the same. It's a mostly thankless task as they are expected to look after people under the most trying circumstances. 

It's the long term day in day out constant tasks both physical and mental to keep moving forward, each person finds their strength to deal with it in their own way. And to make the best of each day without faltering as you have the life of someone in your hands is something quite amazing. 

I have it easy to be honest in comparison to what Stephanie Nimmo goes through, all I'm dealing with is my road to wellness and I can control how I am in this, but when your essential support cant function you realise how wrapped in your own world you can be and not see the needs of others.

Give the invisible children a break too

A few years ago I wrote a blog post about whether respite was a right or a privilege.  It has always felt like I should be so grateful to the powers that be for the opportunity to get a full night's sleep.

When you become a parent you expect that the early years are going to strongly feature broken sleep and long hours watching the latest Disney offering, but eventually your child will sleep through and become independent and your evenings are reclaimed.  And as they grow older they go on sleepovers at friend's houses, stay with Grandparents and go away on school residentials.  Eventually you find yourself (as I often do with Theo) texting them to see if they are coming home that night and will it be OK to put the lock on the door!