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 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 .

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.



22nd March 2016

Today I was supposed to be in Brussels.  Today was supposed to be a day just for me, a first chance to get away with a friend and have time to wander, shop, visit museums, eat, drink.

Today ordinary people were going about their business when their lives were shattered by terrorist bombs.  They left their homes, their loved ones, never to return.  All over the world this is happening.  Not just in Brussels today, in so many cities lives are being changed immeasurably, forever.

I could have booked onto an earlier train, I could have booked a flight instead of the train, I could have been in Brussels when the bombs went off.

 When the first messages began filtering through about a bomb in Brussels airport we were already on the Eurostar train, with five minutes to go before departure tweets started coming through about further bombs on the underground and we took the decision to get off the train.  This was all to the great surprise of our fellow passengers and the platform staff, seemingly unaware of what was unfolding at the other end of the line.  Being a parent of a child with special needs you think about scenarios that other people probably don't have to contemplate, my main concern was being stranded in another country and not able to get back for Daisy.

 As we go about our daily business none of us know what is around the corner.  Today I was fortunate not to be caught up in a terrorist atrocity, my children were spared the stress of worrying about where there mother was and when she would come home.

I spent a lovely day in London with my friend, rather than being angry that our plans had been ruined we were grateful that the sun was shining and we were able to enjoy time in our wonderful city.

Tonight I'm thinking about the families in Belgium who never got to say goodbye.

Don't leave things unsaid, don't live with regret, don't live with fear, life really is too short.




Memories, milestones & wishing time would stand still

So we're mid way through March, spring is definitely here in London.  Yesterday I did a 20 mile training run in preparation for the London Marathon.  The Thames towpath was slowly coming back to life after winter, hawthorn blossom, clumps of daffodils.

Easter is looming full of rebirth and new life, but I want time to stand still, I wanted time to stand still from December last year.

I'm not alone in this, a recent conversation with another woman  also widowed prematurely in 2015 confirmed she felt the same as me.  We both discussed how New Year's Eve had affected us, I wanted the year to go on forever because the chime of the bells at midnight meant that we were no longer in the year he had died, that it was already in the past, she felt the same, it was a relief to know I was not being irrational.

Bye Bye Daddy - Talking about death when your child has a learning disability

This is the makaton sign for sad




And this is the makaton sign for Daddy




Daisy uses these signs all the time at the moment, she uses them a lot when people come to the house because she wants to tell them about daddy.

She also uses her voice , at least 100 times a day she says “bye bye daddy” .

One Month. One Week. Bowie.

Today is a sad day.  One month ago today I held my husband's hand as he took his last breath.  I told my children that their daddy had passed away, I tried to help my learning disabled child understand that daddy was not coming back.

A week ago we held his funeral.  We struggled through my daughter's birthday, Christmas and New Year before we could say our final goodbyes.  We had an evening of celebration on Saturday 2nd January filled with laughter and stories, eulogies of hope and pride.  His funeral on Monday 4th January was when it hit me.  He was not coming back.

My Eulogy for Andy's Memorial Service

We gave Andy a wonderful send off, filled with friends, laughter, music, stories, just as he wished.  People travelled from all over the world to be there and it gave the children and I such comfort to see all these fabulous people from so many areas of Andy's life talking and sharing memories.  We held a Celebration/Memorial Service at Andy's former Drama School in London on Saturday 2nd January and followed it with his Funeral Service on Monday.



We played many of the songs that Andy had requested and friends sang, read and shared stories of time spent with him, we even had a singalong to Hey Jude at the end of the memorial!

Our children delivered incredible, heartfelt eulogies at the funeral, telling everyone how they would life the life their Dad had prepared them for, full of optimism and hope, fulfilling their potential and seizing the moment - I not have been more proud.

I spoke at both the Memorial Service and at the Funeral and here's the transcript of my speech at the Memorial - it is very lengthy so you may want to grab a cup of coffee before you start reading, it's just indicative of the full life Andy lived.  Thank you to everyone who has reached out to our family over these weeks, now we are going to have to learn to live yet another new life, this time the one without Andy.

Daisy has been amazing, just like the rest of the children and we will be releasing some balloons in the next day or so with her so that she can say her own private goodbye, I will also blog on what it has been like helping a child with a learning disability understand that their daddy has died as I have already learned a huge amount on what and what not to do or say.


Steph's Speech for Andy's Memorial Service - 2nd January 2016

Andy and I spoke a lot about funerals and celebrations, he was determined that his friends who knew him well and had shared so many experiences had an opportunity to share stories and have a laugh and reflect on a life well lived.  It was never going to be about mourning or regret, that wasn’t Andy.  The thing he really wanted you all to know was that he did not lose a battle with cancer.  For him it was about optimising the odds, science, drugs, knowledge a smattering of NLP to give him the longest survival time.  That time was just over a year.  It was in the end less than he had hoped for but more than we ever thought possible in November 2014 when we were told that he had advanced, incurable colorectal cancer.

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