Seasons in the sun

The Summer holidays are tough for families like ours, even more so now that Andy is no longer with us.

When everyone is at school and college there is routine and structure, the holidays throw this into disarray.  Bedtimes and wake up times are out of the window, mealtimes become flexible.  It's a familiar story for any family but the impact is multiplied many times over within our family.

People with autism and with learning disabilities need routine, structure and predictability, no wonder the long summer holidays become such a battle ground in our house.

And then this is the first year without Andy, the first long summer holiday. It's a year of firsts, every one of them significant.

#hellomynameis

When Andy was first diagnosed with cancer I found myself trawling the internet, trying to find good news stories about people who had survived a stage 4 diagnosis.  It was during one of those searches that I found Dr Kate Granger.

Kate is an NHS doctor, she also has terminal cancer.

Being both doctor and patient has enabled Kate to see her profession through different eyes, as carer and cared for.

During a hospital stay in 2013, recovering from post-operative sepsis, Kate was struck by the fact that so many staff looking after her didn't introduce themselves before delivering her care.  As she said, it seemed incredibly wrong that such a basic step in communication was missing.

Kate and her husband Chris decided to start a campaign, to encourage and remind healthcare staff of the importance of introductions in healthcare.  And so the hashtag #hellomynameis was born.

The dreams you dared to dream...

Both my boys have high functioning autism.  We have (with their permission) always been very open about this, celebrating their difference, their uniqueness, their talents  - what they can do, not what they can't.

You can read more about our life with autism here http://www.wasthisintheplan.co.uk/p/aspergers.html

Theo, my eldest son is 19.  He was diagnosed in his early teens, as many quirky, intelligent, high functioning boys with autism tend to be.  Puberty was like kryptonite to his hormones, the meltdowns, the stress, the anxiety tested the whole family. School refusal, failing academic performance, arguments and challenging behaviour followed.  Life for all of was tough.  Although we were caring for the increasing medical needs of Daisy and our younger children, Theo's needs took up a huge amount of our time and energy .

And so life goes on

I've neglected my blog for far too long and it's about time for an update, particularly for those of you who don't follow me on social media (if not, why not?  just click on the links to the right).  I have to admit there was also the small matter of the fruit salad and the macbook which resulted in a not very happy macbook!  But we have moved on from that now thanks to the lovely people at Co-Operative Insurance!

Daisy has had a few trips to hospital, one planned (for a small surgery to remove a lump from her temple and sort out some problems with one of her stomas) and  unplanned ones involving the inevitable blue lights and major juggling on my part. Each time a stark reminder that I am on my own in this, in the decision making, in supporting the children.  Even in just having another pair of hands to help share the load.

The day Daisy went into hospital for her surgery was also my birthday, another first, but despite everything the children made it fun and we even managed to get home in time to have some cake together.

Talking about it doesn't mean it's about to happen

I know I talk about death a lot in this blog, but everyone who knows me personally also knows that I am the most optimistic, positive person out there.  Because I talk about death doesn't mean it's going to happen imminently,  it just means that when I die I will, as the British so quaintly say "have my affairs in order", as you can imagine my affairs are somewhat complicated so all the more reason to make sure they are in order.

Death and taxes, they are the most inevitable things about our life on earth.  Yet people who will easily visit an accountant to manage their tax affairs would not consider going as easily to a solicitor to sort out their will.

London Marathon 2016: Job done.



2016 London Marathon done, not a personal best time but pretty decent at 04:24 given everything else I have had on my plate.....



It was emotional at points, being out on the course for over four hours gives you a lot of thinking time but I was lifted by all the people lining the route, especially my friends from ShootingStar-Chase Hospice and from the Wimbledon Windmilers Running Club.

It's only been 4 months

It's only been 4 months.  4 months since I last held Andy's hand, 4 months since he was in this house. In the days and weeks afterwards I was swept along by the wave of practicalities, the memorial, the funeral, the paperwork.

In the past four months I have been grateful in many ways for the challenges and distraction of keeping the plates spinning with my family.  The week after Andy died it was Daisy's birthday, then Christmas, New Year, the final goodbyes, hospital appointments for Daisy, meetings at the children's schools and colleges, two more birthdays - Theo is now 19, Xanthe turned 17, Easter, Valentines, Mother's Day.

It's about time we stopped treating disability issues as an afterthought

A couple of weeks ago I decided to take Daisy to an inclusive Dance & Singing workshop at the Royal Festival Hall on the Southbank in London.  I had seen it advertised the day before and thought it would be a fun thing for us to do together on the Saturday morning.  We live in London, we have an amazing mass transport system, except, of course, if you are disabled like Diasy, then getting from A to B involves a lot more planning and preparation.



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