Riding 100 Miles: For a very special reason

"Mum's on Box Hill again!"

Over the past few months, aside from holidays and breaks for illness I have swapped my regular running and swimming training for long rides on my road bike out into the beautiful Surrey Hills, always fitting in a coffee and flapjack in the cafe at the top of Box Hill . That is the point in my ride where I inevitably get a text from one of my children asking where I am and what time I will be home as there's no food in the house....

On Sunday 29th I will be taking part in the Prudential Ride London-Surrey 100. It's a 100 mile bike ride through London, out into the Surrey hills and back again. "Why, oh,why are you doing that Steph?" you are probably saying to yourselves.
Well it comes down to a medal. And not any medal, it's the coveted London Classics Medal.

Launched last year, the London Classics medal is awarded to people who have achieved the three premier London-based endurance challenges; the London Marathon, the 2 Mile Swim Serpentine event and Ride London 100.

Well having two out of three in the bag I couldn't resist going for the big one, adding Ride London 100 to my CV and receiving that big piece of extra bling in the bargain (together with the Ride London medal).

Daisy loved to see my medals. She was my biggest fan. She cheered me on in countless races and when she could not be there she loved to inspect my medals once I got home. She would have loved to see this new, extra-large medal and hear the story I would tell about my exploits going up the hills very slowly and down the hills very fast. I would always have to put a funny spin on the story, I would probably tell her about how the water bottle flew off my bike last Sunday as I hit a pothole in the road while going far to fast downhill.

I didn't get a place in the ballot for Ride London but as always our beloved hospice ShootingStar-Chase came up with the goods and offered me a place. And as always I will not only dedicate my race to Daisy, tucking a daisy into my hair in the morning so that she is with me, but I will use it as an opportunity to raise awareness and funds for the place that walked beside us every step of Daisy's twelve years.

ShootingStar-Chase were there from the beginning of our journey with Daisy, giving us much needed respite breaks, emotional and practical support at time when we were drowning and overwhelmed. They were there when Andy was diagnosed with terminal cancer and at the end of Daisy's life they were there to help us pick up the pieces. All of the support that was given to us was free and yet the hospice, just like all the children's hospices in the UK, receives minimal guaranteed government funding for it's services. Services which support the sickest and most fragile children in the UK for however much time they have.

So, on Sunday I will ride, not just for my extra big medal, but also for Daisy and for the thousands of life-limited children in the UK who are not expected to reach adulthood but rely on children's hospice services to ensure that their lives, however short, are the best that they can be.

Here's the link, it's the same one as always, the one I set up when Daisy died. Wouldn't it be brilliant if we could hit a nice round figure?

It's going to be hot on Sunday, it's going to be hard work but as always nothing compares to the daily challenges Daisy always faced with a smile.And of course there's the medal, I have to get that medal for her!

Coming to terms with it all

It's so hard to believe that Daisy has gone, that we will not see her any more, that I won't hear her call out "mummyyyyy!!!!!!!".  She was the centre of our home.  Everything revolved around Daisy, because she insisted it should.  Her siblings were at her beck and call, in and out of her room, sorting out her ipad, responding to her demands, cuddling her, just being there.  That's what Daisy liked more than anything, to know that we were there.  She just needed to have us around.

Over the past couple of months she had been spending more and more time in bed or lying on the sofa, with her ever present ipad, she liked to observe the domestic chaos of our home.

And now this focal point has gone.  And we wander in and out of her room like lost sheep.

How can it be that in the space of less than fourteen months we have gone from a family of six to a family of four?  The house is too quiet.  The washing basket a testament to the reduced numbers.

Daisy passed away on the intensive care ward at Great Ormond Street hospital.  The team did everything they could but in the end it was Daisy's time and she was tired.  She had been tired for a while.  I knew it was coming.  But even when the end came it was such a shock.

We moved her to a lovely room the hospital has on it's intensive care wards.  It's the room for the children who have passed away.  There is no medical equipment, they have made it as homely as possible.  In this room we shed our tears for our girl and kissed her goodbye away from the beeps and alarms in the main ward outside.  The nurses washed her and thanks to our hospice team we then brought her home for one last time.  She just wanted to come home.

Our hospice at home nurse met the boys at home and got her room ready, setting up a cold blanket on her bed.  Xanthe and I followed behind, bringing an empty wheelchair and a bag full of memories.  The funeral directors who had dealt with Andy's funeral the previous January brought our girl home and she spent the night in her bed, surrounded  by all of her favourite toys as we drifted in and out, each spending quiet time with her, stroking her face, hardly able to process the reality of what had just happened.

The next day she was taken to her beloved hospice, ShootingStar-Chase, as we always knew she would.  She stayed on her cold blanket and rested in one of the bedrooms as the special chilled bedroom was already occupied.  This was a better option for us as we could sit in Daisy's room with her and in time allow some close friends to come and say their goodbyes.  Xanthe and I chose her Princess Anna from Frozen dress to wear and my friend Sam brought a beautiful flower crown of fresh roses and eucalyptus.  We sat with her smiling and laughing and remembering so many happy times.

When a child dies and is resting at the hospice the team hang a butterfly outside the front door.  For many years I visited and saw the butterfly, and then it was Daisy's turn.

The hospice seemed so quiet without Daisy, without her pumps beeping or her constant presence checking what everyone else was up to.  I stayed in one of the parent flats and being there cocooned me from the outside world and allowed me time to process what had happened.

But I knew we had to face the reality so last Friday Daisy was moved to the funeral directors and tomorrow I will visit and tuck her in for the last time,  surrounded by toys.  On Wednesday we will take her to school for a final journey and hold her funeral there, it's only fitting that Daisy should do things differently after all.  Her cremation will be held privately with just myself and the three children on a separate date.

We had twelve wonderful years with Daisy, she taught us so much, it's time to let her go and say goodbye.  We will do her proud.

This is the link to the page for donations in Daisy's memory to our hospice

https://www.justgiving.com/fundraising/DaisyRoseNimmo

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.

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!

...with a little help from my friends

This Sunday I am running the London Marathon again.  I ran it last year thanks to a golden bond place from ShootingStar-Chase, Daisy's Hospice.  Those people who know me well and follow this blog know that running is my thing, it's my way of keeping sane in this crazy world I live in.  Last year I  raised lots of money for our hospice when I ran the marathon, it was a way of giving back for everything they have done for our family over the years.

A tale of 3 Marathons (The Postscript)

I am now the proud owner of 3 marathon medals, the newest and the shiniest is my medal for the 2013 Virgin London Marathon which I completed in 4 hours and 19 seconds - darn you unravelled shoelaces, you cost me a sub four!!!  In fact my garmin watch does tell me that I completed the marathon distance in 3 hours and 58 seconds but weaving in and out of other runners adds precious inches to that distance.

A tale of 3 Marathons

For those of you who don't know, on Sunday 21 April I will be joining 35, 0000 other people in running the Virgin London Marathon 2013.

If you follow this blog you will know that I returned to running in January last year, joining my local club, Wimbledon Windmilers and taking on the challenge to run 7 races to mark the 7 years of care our family have received from our wonderful hospice, ShootingStar-Chase.  You can read more about this here This Mother's Day I will be mostly... and here Fundraising for our Hospice.

Daisy on Text Santa

Here's Daisy's story featured as part of the Text Santa appeal show which went out in the UK on Friday evening.  So proud of my little girl!

Tis the season to be jolly

Sometimes even I am taken aback by the many twists and turns of our lives.  For all of November Daisy was in Great Ormond Street where she had a major five hour surgery, central line infection and sepsis, blood transfusions, fluid resuscitation's and various ongoing bladder infections.  Once  she was stable and the hospital were not doing any more than we would do at home (which as you know is quite a lot really!), we transferred for a lovely transitional stay to our hospice, this time the one in Hampton, Shooting Star House. 

Happy to be in the ambulance transferring to Shooting Star House

Extreme Multi-tasking

On Sunday I completed my last run in the challenge I had set myself earlier this year to run 7 races to mark 7 years of care by our hospice, ShootingStar-Chase for our family.  The last race in my series of runs was the Loseley 10k - a very challenging cross country run over fields, up hills and down sandy tracks - made even more challenging by the torrential rain we drove through to get there!  I was joined by my lovely boys, Theo and Jules who had been cajoled into running the 4k version of the race.  I had also agreed to give a speech to the assembled runners on the start line about the hospice and what it means for our family.  This is what I mean when I titled this post extreme multi-tasking  - really how many other people turning up for that race had had to get up several times the night before to administer pain relief to their child, disconnect her TPN, rouse the reluctant boys, battle through driving rain and closed roads then stand up and give a speech before jumping off the stage and running 10K across muddy fields????