Realistic Resolutions

"I don't make resolutions"

Andy always made this announcement at New Year (whenever I started reeling out my list for the year).

He firmly believed the focus should be about changing habits , not making unrealistic promises.  "It takes six weeks to change a habit" was his rationale and he felt that you didn't need a point in time like a new year to make changes, we should be constantly thinking about what we would like to do differently or change and make realistic goals so we don't set ourselves up for failure.

I do like a resolution however, I love a deadline, it drives me and being a naturally competitive person it gives me something to work towards.

In 2012 I resolved to get back to running again.  I had always been a regular runner, even from my teenage years but it had tapered off as a result of the long hospital stays with Daisy, the comfort eating was making me bloated and I took a look in the mirror and decided that this was not what I wanted.

Looking at you now, you would never know

Daisy was born by c-section.  That wasn't in the plan.  My other children hadn't been born that way.  We had hoped for a home waterbirth, the same as Jules two years previously.  But as always with Daisy she called the shots.  Things were not looking good, I had been in and out of labour for a few weeks and eventually my consultant decided that she had to be delivered.

So instead of a valentines baby we had a nearly Christmas baby.

Andy rushed down to the NICU once I was back in recovery.  "It's Daisy Rose" he told the ward administrator when she asked him if the baby had a name.  Years later she told me she still remembered that, after the hundreds of children that she had to officially register as patients she still remembered Daisy's arrival and Andy informing her that she was Daisy Rose.

We celebrated her 12th birthday today.  12 whole years since she arrived.  No-one quite knew what was going on with her, they still don't.  She has so much more than her main diagnosis.  She has something else going on which isn't covered by the Costello Syndrome Diagnosis.  Maybe one day they will find out, maybe they never will.  But she is still here and still defying the odds, despite everything she has been through.

We went to see Disney on Ice today, travelling there by train, Theo came along to help and she loved it.

On the way back she laughed as a man dropped his newspaper in his rush to board the train and he laughed back and smiled.  As he left the train he came over to say hello; "I lost my little girl this year' he said.  "Daisy lost her daddy this year" I replied.

Even though Andy had died a week before Daisy's birthday last year, this feels like the first year we celebrated it without him.  Last year we had made plans for her birthday, last year we hadn't even had his funeral.  Last year I was still numb and in shock.  This year is the first birthday and Christmas we celebrate without Andy.

All day Daisy has talked about Daddy.  When I asked her what she wanted for her birthday she told me "Daddy back".

But life has to go on when you have children, so we celebrated.  12 whole years since Daisy arrived in our lives and turned them upside down.

Running down corridors
Through automatic doors
Got to get to you
Got to see this through
I see hope is here in a plastic box
I've seen Christmas lights reflect in your eyes*

Happy Birthday Daisy Rose

(*Lyrics from Wires: Athlete)

One Year On

14 December 2016

It's been a whole year since we said goodbye to Andy.

12 months.

12 months where we have had to learn to be a family without him.  To keep going without his larger than life presence.

I still can't believe he's not with us.

I still can't believe that the clock stopped a year ago today.

I have barely had time to catch my breath this year.  Holding the family together, dealing with the fallout of his passing.  The paperwork, the stuff that needs to be done.

Learning to be the sole parent.  Learning to make big decisions about our children's lives on my own.

Learning to stand straight, without my rock to lean on.

Fighting for the support my children need.  So that they can get through this time.

I have had to put my own grief on hold time and time again.

Next year will be harder, I can no longer pretend he's away, in the next room, coming back soon.

Next year I know the reality will hit.

Thank you to everyone who has been there for us this year.

Please keep checking in on us.

We are still hurting.

We love you Andy and miss you so much.

One in a million.

Decisions, changes....

When Andy was alive we always worked on the assumption that we would outlive Daisy.  That we would not need to worry about what would happen to her if we were not around.

But things are different now.  We did not expect Daisy to outlive us.  We did not expect Andy to die. It's the first anniversary of his death in two days.  Next week it will be Daisy's 12th birthday.

I never in my life thought I would be remembering the passing of my husband one week and then celebrating my life limited daughter's birthday the following week.  The world has been turned upside down.

But it is what it is, so I need to accept this.

However this means that plans need to be made which I never thought I would have to make. The main one being; what happens to Daisy if anything happens to me?

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 and here

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.


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.