When Life Gives You Lemons: Amelia Denton

I am loving this WLGYL series because it has introduced me to some incredible people.  Sometimes those people were under my nose and I've been able to look at them with new eyes.

I've known Amelia since she was a little girl.  She is my friend Suzanne's niece and my first meeting with her was when she was a bridesmaid at Suzanne's wedding 26 years ago (in fact it was Suzanne's husband, Jon, who first introduced me to Andy).

I really did not take much notice of Amelia at the time apart from noticing the fact that had a disability.  I knew nothing of disabilities in those days and I probably felt pity and maybe even a level of discomfort in engaging with her.  She was a little girl after all and communicating with children, let along children with disabilities was not something on my radar in those days.

But I am so fortunate to have got to know Amelia the person.  I've seen her grow up through Suzanne's eyes as she posted pictures of Amelia's achievements, always the proud Auntie.  And now I know Amelia the woman, the mother, the person who wants to make a difference, and I'd like you to get to know her too........

Amelia and her son, Elliot

When Life Gives You Lemons: Marni Smyth

About a week ago my friend Suzanne shared a post on her timeline.  It was a Go Fund Me link for her friend Marni.  Marni was fundraising to buy a new powerchair. This chair is going to cost more than her car! Yet without a decent chair Marni is denied access to the life that most of us take for granted.  She is denied independence and the opportunity to pursue a career she loves, for which she trained and is supremely qualified to do.

When Life Gives You Lemons: Rosie Jones

A few weeks ago I attended the Women of the World festival in Norwich.  I took part in a panel about how the role of caring often falls to women and  I also shared my story and the lessons it has taught me on the final day.  I got to meet lots of lovely readers and signed copies of my book.

I stayed with my great friend Helen Linehan.  She was also talking at the event as part of a panel about women in the media (Helen co-wrote the BBC comedy, Motherland).  On the first night of the event the team from the incredibly successful and influential Guilty Feminist podcast were recording two live podcasts, the first was a focus on the Repeal the 8th vote .  Helen took part in that session and shared her very moving story about discovering that her first child with her husband Graham, had a fatal foetal abnormality.

The second podcast of the evening featured the comedian Rosie Jones.  I got to spend some time with Rosie in the Green Room back stage and as we chatted it struck me that she was a perfect candidate for the WLGYL series on the blog.

For those of you who don't know her, Rosie is a successful comedian, she also has cerebral palsy, she also recently came out as lesbian.

I loved meeting Rosie, we had a really good chuckle about our mutual hate of so called inspiration porn.  She's incredibly funny and if you are going to the Edinburgh Fringe later this summer make sure you go and see her show Fifteen Minutes.  Rosie explains the significance of fifteen minutes in this interview...

When Life Gives You Lemons: Debs Aspland

When Life Gives You Lemons is my blog series profiling some of the incredible people I have met during my journey.  People who, like me, have faced adversity but refuse to be defined by it.

Next up is Debs Aspland.

I first met Debs very briefly in 2012 when we both attended the Britmums Brilliance in Blogging Awards.  We bumped into each other again a couple of years later when were invited to meet with and give feedback to the Minister of State for Children and Families.  However it was over drinks on the Southbank that I really got to know Debs and recognise her for the kindred spirit and fellow warrior she is.  She definitely shares my rebellious streak and I couldn't wait to ask her to be the subject of an interview for my When Life Gives You Lemons series.

Long hot summer just passed me by

The long summer holiday.  Obviously I use the word "summer' in the loosest sense of the word as I have resorted to firing up the woodburner and digging out my winter boots on more than one occasion this summer as we enjoy the ups and downs of the British weather.

Thanks to the "on this day" function on Facebook I receive daily reminders of previous summers.  Last sumer when Daisy developed shingles just before I was about to go away for a much anticipated school reunion and how she bounced back as only Daisy could so that at the eleventh hour I could make it.  The week's  break Andy, Jules and I took in Southwold when Andy was recovering form his SIRT treatment - sitting together on windswept beaches, plenty of shots of all the lovely food we consumed that week.

An empty wheelchair

One of the first things I did the day after Andy died was to bag up all his meds, injections and creams and take them back to the hospital.  They were a visible sign of his cancer, they were not Andy, they were things that had become part of our lives after his cancer diagnosis and I didn't want them in the house any more.

I wanted to remember a time when life with Andy wasn't medicalised.  When it didn't revolve around hospitals and chemo and drug regimens.

In only a short time we had collected quite a pharmacy for Andy

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

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.

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.

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.

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.

Parenting - the toughest job in the world (and don't expect the little darlings to thank you either)

We are currently entering week 3 of Daisy’s stay at Great Ormond Street hospital.  On the 14^th October she had an 8 hour surgery to her bladder and abdomen aimed at sorting some ongoing problems and creating some solutions which will improve her quality of life.  Thanks to the wonderful, skilled team looking after her the surgery went really well and she is recovering slowly but surely, the ongoing issue, as always, being the management of her pain .  Of course Daisy loves to move the goal posts every now and then, this admission she developed an extreme sensitivity to intravenous morphine which means we really can’t use it.

It’s been so difficult dividing myself between here and home, making sure Andy is eating OK, rushing to meet him at outpatients appointments.  And while our other three children are now teenagers, in many ways they need me now more than ever to be a listening ear and to help source the lost travel card from a distance (I have special skills in this department). 

It's times like these you learn to live again

It's funny the opportunities adversity can throw at you.  We have found this with Daisy, we have experienced the lowest of lows at times but also have had a world opened up to us that would never have been possible if we had not been the parents of life limited child with her level of complexity (and huge personality!).

Accessible Glastonbury

We are back from another epic Glastonbury, batteries recharged and home to the fabulous news that Andy will start SIRT radiotherapy treatment by the end of the month with a view to trying to make his inoperable tumours, operable.

Focusing on getting to Glastonbury has got Andy through the months of gruelling chemo  and we've come back determined to get there next year (when hopefully The Foo Fighters will play and Andy will meet his hero at last!).

Team Nimmo at the Pyramid Stage

When carers get sick

I've got yet another chest infection, I feel really rough and no doubt, thanks to my asthma, a prescription for a course of steroids will be on the cards by Monday.  It took all my human strength to get Daisy to her respite at the Children's Trust on Friday.  Respite that had been booked initially because I was supposed to be running an overnight Enduro race on Wimbledon common, when an ongoing achilles issue scuppered those plans we then planned to visit friends in Cambridge and have a weekend away, when chemo scheduling scuppered those plans I arranged post birthday drinks with some of my friends - and now this lurgy has scuppered those plans.

If I worked full time I would have been signed off sick, but when you are a carer and people rely on you to make sure you have meds or food or to speak to doctors on their behalf then you cannot be sick.  It just all became too much yesterday as I felt so poorly and fed up about our situation. Fortunately we are all made of pretty strong stuff in our little family and they all rallied around showing through actions (and not necessarily through words) that they do care and appreciate what I do.

Words came this morning however in this lovely post my husband put on facebook, it sums it all up really. 

It's carers week and it's great to see a campaign to highlight the huge need to look after those doing the caring for people with illness and disability. 

This weekend hasn't been the happiest as the one person holding our shit together gets sick and things start to get difficult. That accumulated stress and pressure on carers affects not just us but shared by hundreds of thousands of people in this country doing the same. It's a mostly thankless task as they are expected to look after people under the most trying circumstances. 

It's the long term day in day out constant tasks both physical and mental to keep moving forward, each person finds their strength to deal with it in their own way. And to make the best of each day without faltering as you have the life of someone in your hands is something quite amazing. 

I have it easy to be honest in comparison to what Stephanie Nimmo goes through, all I'm dealing with is my road to wellness and I can control how I am in this, but when your essential support cant function you realise how wrapped in your own world you can be and not see the needs of others.

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!

The EHCP Process: An exercise in jumping through hoops?

Securing an Education, Health & Social Care Plan to support your child's special education needs feels at times like being forced to jump through hoops, over and over. Having been through this process recently I thought I should share our story, and my tips for getting through the process without getting burned.

I wrote last year about our youngest son and his diagnosis of autism spectrum disorder.  You would think, being the parents of a child with learning disabilities (and a syndrome associated with autism) as well as a highly intelligent eldest child with aspergers/high functioning autism, that we could have spotted it a mile off.  But the reality is, just as I tell the professionals, every child is different, every child presents differently.

So Jules has an official diagnosis of Asperger Syndrome (now commonly known as high functioning autism).  His issues are very much around anxiety and he has speech and language and executive functioning difficulties which in a nutshell have meant that transition to a huge London high school from a small suburban primary was overwhelming for him.

The parent room conversation I wish I could have had with Ashya's mum

December will mark 10 years of me riding the "parent of a medically complex child" roller coaster, I have seen a lot of things, been through a lot and I guess I can sometimes find myself in the position of sharing my experience and thoughts with other parents.

Often the best conversations I have had have been in the parent's rooms of children's wards, late at night when you try and have a few moments over a cup of catering tea, flicking through gossip magazines without really taking them in, your mind preoccupied and mulling over the day's discussions with the medical team.

Richard Dawkins & the danger of generalisation in 140 characters

You have probably noticed that I don't normally jump on the bandwagon when someone makes a crass comment about disability - I might send a tweet or two but that's as far as it goes, I tend to think the Cllr Colin Brewer's of this world are not the mass voice of reason and intelligence and only represent a minority.

But today I really feel the need to write about someone who commands a huge global audience and is well known for his reasoned arguments based on scientific logic.  Richard Dawkins is a respected scientist, Vice President of the British Humanist Association and Ethologist.  He is the author of many best selling books on Science and Atheism and commands a huge worldwide following.