All the firsts

It's been nearly a year now.  It's been a tough year.  So many firsts; first father's day, first mother's day, first wedding anniversary, the children's birthdays, first new school year, first football season.... the list is endless, every day of this year is the first one since Andy left us.

But the big ones are coming now.  The first time we celebrate his birthday and he's not here anymore.  And we will celebrate it.  Celebrate that he was here, that he was born, that he lived.

The older children and I are going away for the weekend.  We'll raise a glass on Saturday as we remember how much Andy insisted on making such a huge deal of his birthday; "I can't load the dishwasher, it's my birthday", "I have to watch my film/netflix series/sports programme (insert preference here!) - it's my birthday".  So we will make it special and wish him happy birthday, the first without him, now that time has stood still, he will always be the same age.

The day Sherlock made Daisy smile (thanks to the London Fire Brigade!)

There are two things that Daisy loves in the world more than her family or her good friends Singing Hands (don't worry Suzanne and Tracy, you will never be replaced in Daisy's affections!) - and that's  dogs and the Fire Service!

A few months ago I saw a local news item about the Fire Investigation Dogs which are used by the London Fire Brigade.  They assist in criminal investigations to see whether a fire has been started deliberately.  They wear special boots to protect their paws from any sharp objects at the scene and their training involves rewarding them with a tennis ball if they manage to seek out a a flammable substance.

Daisy's working cocker spaniel dog, Pluto, is her best friend.  He adores her and she adores him.  If Daisy has a seizure he is there by her side, licking her face until she comes out of it.


We are a family, not a cost

Sometimes it feels like I'm a character in some Orwellian nightmare.  Not because of losing Andy or because of any of the children's issues but because my life, my plans, my hopes are all controlled by someone called "The Commissioner"

The Commissioner is a faceless person, they sit in an office, they are not always the same person,  they change frequently.  I have rarely met them but they know me, or rather they know my daughter.  They don't know her name, just her initials.  It's better that way.  The more you know about someone the easier it is to become emotionally involved.  And The Commissioner doesn't want to become emotionally involved.

The Commissioner holds the budget.  They look at their spreadsheets and they see the big figures and wonders who is eating up all of their budget, who is this very expensive person? 

It feels like I'm up for an Oscar!

No, really!  When you write a parenting blog, to be shortlisted for an award in the Mumsnet Blog awards is the blogging equivalent of being up for an Oscar.

Late one evening last week my phone pinged with a twitter notification from Mumsnet, apparently I am one of eight bloggers shortlisted in the best campaigner category in their annual blogging awards.  Blimey, I nearly choked on my cup of tea!

There are 8 blogs on the shortlist, all absolutely amazing reads,  written by women doing incredible things.  So why would you want to vote for me to become one of the three finalists, to be be judged by Shami Chakrabarti of being awarded the accolade of being "Best Campaigner"?

Well, as regular readers of my blog know I just don't sit still.  I may have been thrown quite a few curvballs in my life and introduced to a world of which I had very little prior knowledge , but I want to change things for families like ours and children like Daisy.

As I say over and over, we are all just a car crash, a premature birth, a gene mutation away from becoming disabled or being the carer of someone with a disability.  This happened to me; from a sucessful marketing career, overnight I became a full time carer of a child with complex needs, I fought to get a diagnosis and support for my two boys who have high functioning autism and I then cared for my terminally ill husband.

I use my voice and my writing , both on my blog and through other speaking and writing opportunities, to raise awareness of the issues involving carers and disabled people in the UK today.  I fundraise for our hospice, ShootingStar-Chase and am often found speaking at events for the Children's Palliative care charity Together for Short Lives because I am frustrated that no guaranteed government funding is available for these essential services despite healthcare providers and social services relying on them so heavily to support families like ours.

You can read more about my fundraising and campaigning work here http://www.wasthisintheplan.co.uk/p/charit.html and here http://www.wasthisintheplan.co.uk/p/in-news.html

And maybe you've read my stuff in the media, I've written for the Guardian, The Independent, The Huffington Post, BBC Ouch! as well as guest posting for Mumsnet, Carers UK, Mencap and Great Ormond Street Hospital.  I have spoken at numerous events from the House of Lords, The Inns of Court, the Department of Health and Fundraising receptions.  I don't have much spare time - as you can imagine - but much of the spare time I do have is spent trying to make a difference, I can't sit back and see injustice when I can use my voice to make a change.

So if you think I am worthy of your vote, please click on the icon below.  Mumsnet have huge influence in the UK, when they speak, people listen.


mumsnet

Voting closes at midnight on 7 October and the winner will be announced at Mumsnet's Blogfest on 12 November .  Thanks to everyone who nominated me to get this far, it seems that lots of you did!  Hopefully you will also want to vote for me to become one of the finalists.


A medal for Daisy, thanks to Parallel London


I try to be a positive role model to my children, I'm always out and about doing some sort of sport, running, swimming, cycling, I want them to see that exercise need not be a chore.  I'm not sure if it's really hit home with the older three, the times they have run with me they have got stuck in the mud and their shoes have come off, or they see me heading off for an open water swim when the sky is grey and rain is forecast and shake their heads in disbelief before returning to their computers .

Daisy, however, is my biggest supporter.  When she is able she loves to cheer me in races,  even more so when there are medals to hang up at home. Actually running with Daisy though has always been a bit more tricky.  She is completely wheelchair dependent so cannot walk and relies on someone to push her.   Her complex regimen of intravenous infusions and catheter care means that most races are out the question as they tend to start at 9am and it's physically impossible to get her up and ready and out of the house. Until recently she only had a standard wheelchair which is not ideal for being pushed in while running.

Earlier this summer we were able to order a fabulous special needs jogging buggy thanks to a fundraising drive by my running club.  Since it's arrival Daisy and I have enjoyed lots of lovely trail walks around Richmond Park and a few jogs around the park opposite our house.

We were really able to put it through it's paces this weekend however as we were invited to participate in the first ever Parallel London Festival in the Olympic Park in East London.

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 .
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