Nascot Lawn, The End.

NHS Nascot Lawn is due to close next week – The 22nd of November 2018.

This morning we held a small gathering of parents, supporters and press to mark the closure.

It wasn’t a celebration as how can anyone celebrate the closure of such an fabulous service that supported the most vulnerable and complex in Hertfordshire? Especially when they are still families with no alternative plans for respite in the near future.

We didn’t want Nascot Lawn to close unmarked. We wanted to acknowledge our campaign and everything we have achieved since we first received those letters back in June 2017 telling us that funding to the service was being withdrawn. As a group we worked tirelessly to put together an educated and fair fight to save Nascot Lawn.

Nascot Lawn parents outside the unit before the closure on 22nd November 2018.

I still struggle to get my head around our campaign going national and all the amazing support and help we have received over the last 17 months, and also that we won 2 judicial reviews against Herts Valleys CCG!

Today is a very sad day, especially for me personally as it feels like another chapter of Lennon’s life is closed forever.

Lennon walking to the car after an overnight stay at Nascot Lawn.

But this is just the start of our campaigning journey! Our great group of parents will continue to use the skills that we have successfully learnt throughout our own campaign to help and support other children and families to campaign for the services they need and rightly deserve.

Lastly I would like to say a huge THANK YOU! to everyone who supported and played a part in our campaign, helping us to keep Nascot Lawn open for an extra year and in doing so facilitating a safe and slow transition for those children that have moved on to new respite settings. We couldn’t of done it without you!

What this space!!

Love Nikki x

15 Months

Grief hasn’t been my friend over the last few weeks and it’s plastered all over my face for the world to see. I feel tired all the time, I could fall asleep anywhere at anytime and some days I can feel myself drowning in sadness. The bags under my eyes show the heavy weight of grief I am carrying inside me. I’m forgetting things – Isla’s extra tap lessons in preparation for her upcoming exam, Florence’s after school singing group, payments for school discos and Rainbow/Guides Pantomime trip.

Some days feel so long, almost never ending. And some days whizz by in a flash.

I try to keep myself busy – I find that being out of the house and around other people helps, but it doesn’t ‘fix’ anything.

Nothing can be fixed now and I have come to terms with that, but I need to attempt to paper over the cracks. My Lennon shaped hole will never be filled, not even slightly, however, that the outside of that gapping black hole can be made more colourful and prettier. And only I can do that…..

Last week I came to the realisation that what I am feeling is depression. I know this because I have suffered with depression since Lennon was born. Not severely, but enough to need a low dose of medication to keep my sadness suppressed.

Lennon and I during a long stay on Badger Ward, GOSH.

I arranged to meet our hospice nurse and one of our continuing care nurses for coffee last week and I found talking with them about Lennon and sharing memories helped to alleviate some of the sadness. I could talk about Lennon all day everyday and I find great comfort in doing so. But there aren’t many people who still talk about Lennon. Maybe they think bringing him into the conversation will remind me of what I’ve lost and make me sad. It can’t – there are no reminders, he is forever on my mind and in my heart. Every second of every day.

We speak about Lennon everyday at home and he is still very much a part of our lives. Our house is full of reminders and happy memories. Florence often sits in his wheelchair at the table to eat dinner and Isla squeezes her size 3’s into his tiny bright Yo Gabba Gabba socks – I love hanging them on the washing line! And as Autumn changes to Winter Ian often reminisces about his long walks around the village with Lennon in the cold wind.

Lennon loved the wind.

Bike ride to watch the baby ducks on the pond in the village.

Florence often asked where Lennon is – A question I still cannot answer as I do not know. I tell her he is sliding down rainbows somewhere, always watching and guiding us. How can I explain life after death to a 5 year old when I don’t understand it myself…..?

Florence loved to steal Lennon’s books!
Isla helping Lennon to draw.

Lennon’s beloved respite centre Nascot Lawn is due to shut its doors next week and therefor the campaign to save it has now ended. Another chapter of Lennon’s life closed forever.

Now I’m focusing on building a legacy for Lennon. I assisted in compiling the Together for Short Lives report – End of Life Care: Strengthening Choice and I recently spoke at the Hertfordshire Rapid Response Conference, both of which I thoroughly enjoyed. I’m due to share my story with student Children’s nurse next month at Hertfordshire University and I’m looking at other ways in which I can share the up and downs of Lennon’s life in order to make a difference to children, families and professional practice. The only way in which people can be educated on life with a complex child is from parents and children who have lived experience. I want to share Lennon with the world! Plus It’s good therapy for my mental health.

Telling my story at the Hertfordshire Rapid Response Conference, October 2018.

It’s a way for me to keep a part Lennon alive – his story will never die.

Lennon and Mummy x

In a Different Life

When I was pregnant with my first child, I imagined all the experiences I would have with my son. As I’m sure all expectant mothers do. Not just the first few weeks and months, but also the years ahead.

Breastfeeding, cuddles, learning to walk and ride a bike.

Trips to the park, standing on the sidelines watching him play football or rugby, and waving him off for his first day at Secondary School.

Little did I know that my life with a first born child would be so different.

Different.

Not worse, in fact sometimes better – And certainly much more interesting and fulfilling in ways only a Special Needs Parent could possibly imagine.

Tube feeding, cuddles with wires everywhere frightened you would knock something that was keeping your baby alive. Bringing your baby home for first time, aged 6 months.

Lennon’s first day at school.

Learning to walk in a frame aged 5, fundraising for an adapted wheelchair bike.

Spending endless days, weeks, months inside a tiny hospital room.

Today, in the life I imagined myself leading this time 12 years ago, Lennon would of started Secondary School. I would be straightening a wonky tie, taming messy hair, shining a pair of smart black shoes and watching an 11 year old out of the front door.

That day was never meant be.

Instead, I would of been administering a ton of medications, changing dressing, emptying stoma bags and packing medical equipment and supplies ready for the day ahead. I would of smothered my gorgeous boy with kisses and cuddles before pushing him out of the front door in his wheelchair and onto the school bus.

Trying to get a photo of them all together always took many attempts….
Finally!

But I am not doing that either.

Instead I am waving off only 2 of my 3 children for their first day of the school year. Florence into year 1 and Isla into year 6.

If you told me I could have Lennon back, even for the shortest time, and I could choose between the Son I imagined all those years ago, or the Lennon we were given, I would never choose the life that I imagined and dreamt of.

I would always choose the Lennon I know and love and our extraordinary life.

Lennon having fun at school, his favourite place.

There will be many Special Needs Parents sending their children off to school this morning wishing that they were on their way to a mainstream secondary school.

I’m sat here wishing my son was alive and that I was standing at my door waving him off on the school bus to his severe learning disability school, watching his beaming smile and flapping arms as the bus turns the corner at the bottom of my road.

The last ‘First day of school’ photo of all of my children x

1 Year

Well, I won’t lie, it was a really tough day.

In all fairness it was always going to be.

We all feel the pain of the last year and no matter how hard you try to forget the really bad moments, they still appear in your mind like an old fashioned showreel.

I forced myself out of bed and after a long, hard cry we ventured out of the flat to spend the day at the beach. It was a day Lennon truly would of enjoyed. The girls spent most of the day in the sea and building sand turtles fittingly named ‘Len’ and ‘Len Len’ after their brother.

In the evening we went out for a meal and sat by the harbour, eating ice creams and reminiscing about all the good times we shared in Torquay as a family of five.

As the day went on everyone’s mood slowly improved – helped somewhat by the sand, sea and sun. And the memories of the last time we were all together in Torquay – Lennon shrieking and arm flapping with delight whilst watching the fairground rides, and how thrilled he was being pushed out to sea in his dinghy. He loved the water and it seemed most appropriate that we spent the day by the sea.

We did struggle to decide what to do. People asked us what would we do on the anniversary of Lennon’s death?

To me, anniversaries mark happy days. Days to remember positive life events: a wedding anniversary for instance.

A celebration.

The day Lennon died is not a day to celebrate. August the 3rd will remain the saddest, most traumatic day of my life and I do not wish to celebrate the day my brave little soldier died.

If I could of slept through that day, I would of.

Ian has been amazing since we arrived. He has been cooking, making sure we are all fed and taken over the responsibility of the girls. I have barely lifted a finger.

It’s just what I needed. I don’t have enough energy or gumption to organise a p@£s up in a brewery at the moment.

Everything feels numb.

I didn’t need to ask him to take over, he simply did.

It’s hard to say whole year has passed, the words get stuck in my throat. Mainly because it doesn’t seem possible that my darling boy has been gone for 366 days now.

The fog of grief is slowly lifting, but the pain is still there. A constant reminder of the missing piece to my jigsaw.

8 months

“The pain you feel now will ease with time.”

So far, I have found this to be statement untrue. As yet the pain has not decreased at all, in fact it feels like it has increased. With each day that passes I miss Lennon more and more, and it hurts. The gapping hole in our lives feels like it is slowly growing.

I’ve gone from sleeping like a log to sleeping badly. I’ve never struggled to sleep before. I toss and turn in bed, trying to turn my complex thoughts into some form of sense.

Recently Lennon appears frequently in my dreams – sometimes he is alive, others he is dead. And despite waking up some nights sobbing, struggling to catch my breath, I do get great comfort from seeing him. I find myself feeling upset when I don’t dream about him.

Sleeping peacefully.

Every morning I get up to yet another day without Lennon.

There are days when I have to force myself out of bed. Grief is exhausting – it seems to steal my energy leaving my head foggy. If it wasn’t for my girls I don’t think I would make the effort to get up and dressed every day.

Florence has been struggling with her grief. Her behaviour has been awful for over a month now. Granted, she has never been an ‘easy’ child (anyone who’s spent time with her will know that!) but even school have noticed that she is talking about Lennon more so than usual.

She regularly asks where Lennon has gone and it’s so hard for us to explain. Lennon is dead, but I have no idea ‘where’ he is….

Florence and Lennon enjoying the swings.

My little girl needs bereavement support – support that I cannot give her.

Florence is a strong, stubborn child and doesn’t like to ‘talk’ or explain how she feels. She is a complex character and even I, as her mother, find her difficult to understand.

Isla however is the opposite. She is an outwardly sensitive child who wears her heart on her sleeve. She is much easier to read and will always approach someone when her feelings overwhelm her.

Isla and Lennon during one of Lennon’s long stays at Great Ormond Street. Even then she missed him when he wasn’t at home.

Isla has fantastic support at school, which is good as she doesn’t like to get upset in front of Ian and I. School is her safe place to grieve. She struggles in the holidays – there is no where for her to hide her grief from us and the Lennon shaped hole in our home is so much more apparent in the school holidays.

Isla misses her brother and is struggling to coming to terms with the fact that she will never see her big brother again.

Watching my children grieve for their brother is as painful as my own grief.

Enjoying Torquay together.

I have been having flashbacks. My mind wanders back to that day. I replay moments minute by minute. I remember the last time he was at home, in his bed. I see Ian carrying him out to the ambulance.

I find myself back in the Intensive care unit, signing the consent form for Lennon to go to theatre. Lying next to him in bed while the doctors turns of his life support.

I try my hardest to override those thoughts with happy memories – Lennon’s bright, beaming smile and his clicking noises.

Big smiles for Daddy! 
Lennon enjoying the freedom of his walking frame.

Life without Lennon is still so difficult to comprehend.

I cannot imagine life without grief and pain and I cannot imagine the pain getting easier with time.

Maybe it will, maybe it won’t.

Lennon, Mummy and Daddy x

Who is a Young Carer?

I had never thought of my daughters, Isla age 9 and Florence age 5, as being young carers and I had never identified them to Carers in Herts (our local charity supporting carers), although their school did know about Lennon and that their home life was not ‘normal’.

It had taken me a long time to realise that I was a Carer myself. In my eyes we were a just ordinary family with an extraordinary member!

What is a young carer?

I thought you could only be a young carer if you were a child caring for their parent.

I was wrong.

The Carers Trust defines a young carer as ‘someone under 18 who helps look after someone in their family, or a friend, who is ill, disabled or misuses drugs or alcohol’.

My girls helped me look after Lennon, their brother.

‘A young carer might help out with practical tasks, such as housework or preparing meals. They may provide help with personal care such as getting washed and dressed. They might help out with looking after their siblings’.

Isla and Florence helped to get Lennon washed and dressed, they made their own breakfast in the morning. Isla would help make Florence’s packed lunch and help her to get dressed for school.

How did I not realise that my daughters were young carers?!

Maybe because they were born into their life, and they had never known any different.

They were born into their caring role.

After Lennon died I met Jodie Deards, the Carers Lead for East and North Herts NHS trust at Lister Hospital and winner of the ‘Commitment to Carers’ award at the RCNi Nurse Awards 2017.

Since meeting Jodie I have become much more aware of what defines a young carer and the impact caring has on their lives whilst they are growing up.

At a time when they should be out having fun with their friends, doing homework and worrying about what clothes they should wear, young carers are busy helping out with cooking, cleaning and laundry, and providing both emotional support and physical care.

The facts shocked me –

There are roughly 700,000 young carers in the UK – that equates to 1 in every 12 secondary school age children.

And 1 in every 12 of those young carers is likely to be caring for more than 15 hours every week.

The Family Action report ‘Be Bothered’ written in 2012 and based on young carers and their education, found that most young carers are not known to be caring by school staff – Being a young carer can be a hidden cause of poor attendance, underachievement and bullying, and many young carers drop out of school or achieve no qualifications.

This in turn will have a huge impact on the rest of their lives.

Young Carers have dreams, ambitions and aspirations for the future just like every other young person and we should be making sure that they get the support and help that they deserve to achieve those dreams, ambitions and aspirations.

If you think you are a Young Carer or you know someone who might be, please visit The Carers Trust and find your local Young Carers support services – https://carers.org/search/network-partners

Jodie’s 5 top tips for Young Carers

1. Let someone know you have a caring role, such as your teacher.

2. Ask for help – nobody can cope alone.

3. Get a break and make time for yourself.

4. When you get tired or angry, step away and take a few minutes to listen to your favourite music.

5. You don’t need to do it alone – contact Young Carers in your county for support. If you are in Hertfordshire please contact Carers in Herts. http://www.carersinherts.org.uk/how-we-can-help/young-carers

For further information regarding Young Carers please visit –

https://www.nhs.uk/conditions/social-care-and-support/young-carers-rights/?

https://carers.org/about-us/about-young-carers

Our first Christmas and New Year without Lennon

We made it through Christmas and New Year, and escaped only slightly scathed out of the other side and into 2018.

Christmas cards arrived and the sight of Lennon’s name missing from them all stung, tears pricked my eyes with the opening of each one.

You may be surprised when I tell you that only 3 people thought to mention that they knew Christmas would be hard for us this year and they would be thinking of us.

The rest all wished us ‘Happy Christmas’ and prosperous ‘New Year’ – How anyone could possible think that our Christmas would be happy and our New Year prosperous is completely beyond me!

Do you think if your child had died 5 months previous you would have a ‘Happy Christmas’?!

After Lennon’s Birthday and the deep sadness I felt in the festive period, Christmas Day was surprisingly going ok. I had made it out of bed in the morning and was dragged downstairs by 2 very excited girls desperate to see the delights that Santa had left behind during the night. Their excitement and enthusiasm carried me through the day, and I felt pleasantly surprised that Christmas Day wasn’t half as bad as I was expecting it to be.

Isla and Florence on Christmas morning.
All Florence wanted for Christmas was Lennon, and a pink car that she could drive.
Isla opening presents.

Until we sat down to eat Christmas Dinner with Ian’s parents and his uncle. The space where Lennon’s wheelchair sat in the dining room suddenly seemed so vast and empty. I felt sad, and that was the start of the downward spiral.

Someone let it slip that Ian had booked a trip to Paris over Mothers Day with his mates. He intentionally hadn’t consulted with me before he went ahead and paid for it and everyone knew except me. He had been hiding it from me with no intention.

Ian wouldn’t be home on Mothers Day. I will have to get through my first Mothers Day without my son alone.

I couldn’t believe he didn’t even pay me so much as a fleeting thought when he booked it.

That hurt.

I was already struggling with my emotions and the pain of dealing with the first Christmas without my eldest child, this revelation tipped me over the edge – like rubbing salt in a cut.

As soon as we arrived home I made my way straight to bed and didn’t surface until late morning on Boxing Day. I forced myself to get up and dressed for my girls.

Ian and I had a blazing argument.

He walked out.

He came home.

We went drove to my mums separately.

We ate dinner, opens presents and I went home.

I took the Christmas tree down and packed away our first Christmas without Lennon. I wanted Christmas over and done with. I didn’t want anymore Christmas without Lennon.

Our Christmas tree, full of memories.

Ian and I made up. Life’s too short to waste time arguing.

The day after Boxing Day we had tickets for Disney On Ice at The O2 – Lennon’s Christmas present that I had booked in the weeks before he died. We went every Christmas. Lennon wasn’t interested in presents so we spent money on days out instead – Lennon loved experiences and trips out and Disney on Ice was one of his favourites.

Lennon enjoying Disney on Ice, Christmas 2016.

We travelled down on the tube and the atmosphere wasn’t great. The magnitude of the day ahead weighing heavily on us all.

The girls throughly enjoyed it and we all spent most of the performance pointing out the little things Lennon would of loved and talking about how much we missed him not sitting amongst us, shouting and arm flapping.

At the end of the performance, snow floated down and covered us, butterflies flew above the ice and we knew Lennon was right there with us.

The butterflies in the Disney on Ice performance.

The days before New Year were mainly long and dull. Ian went back to work and I didn’t have the energy or the enthusiasm to take the girls anywhere. I felt a heavy fog take over me with a New Year imminent.

New Year has been a sticking point with me since Lennon was born – celebrating a New Year with a life limited child, to me felt completely out of the question. The approaching year could be Lennon’s last – why on earth would we want to celebrate that?!

This time the New Year brought a new torment with it.

2017 knew Lennon.

Lennon knew 2017.

Lennon was alive in 2017.

2018 would not know Lennon.

Lennon would not know 2018.

In 2018, Lennon died last year.

That hurt me.

A lot.

After spending days moping around not getting dressed and crying, by New Years Eve I had realised that I really did need to get out and make some attempt to save my drowning self.

I even put some make up on.

We took the girls for dinner at ASK and then went to the local pub for a few drinks with friends.

Florence enjoying ASK!

We had the girls with us, so no plans to stay out and see the Year change – I knew that would be a step too far for me. So we left the pub at 22:30 with Florence and ventured home. Isla wanted to stay with her friends, so we left her behind.

On the 1st of January 2018 I woke up strangely relieved. Relieved that it was all over. But still sad. Sad that Lennon died last year. Sad as the hard, cold realisation that time moves on hit me yet again.

I don’t want Lennon to be left behind in 2017.

Forever in 2017, Forever 10.

Lennon and Mummy x

December 3rd, 4 months.

On the 3rd of December it will be 4 months since Lennon died.

17 weeks since I last saw his ocean blue eyes wide open.

121 days since his little body grew too tired to carry on fighting.

My gorgeous boy.

I want to be able to tell you that the pain has lessened slightly, but it hasn’t.

It’s still there.

It smacks me in the chest when I awake every morning. It still hurts, but the pain is becoming familiar.

Some days I feel like I’m drowning in pain, my body feels heavy and my head foggy.

Some days I feel ok.

There are rare days when I feel good. Not happy, good – I can’t imagine feeling real, true happiness ever again.

Our home is quiet and bare.

No nurses or carers in and out at all times of the day.

No school bus.

No deliveries.

No mad drugs runs to various collection points.

And the phone barely rings anymore.

They came and took away Lennon’s bed. The magnitude of this was immense – not only is there now a gapping space in Lennon’s room where his bed stood, but there is also the cold fact that now Lennon has nowhere to sleep in our home. He is definitely not coming back.

Florence cried for days. She was always very aware of the fact Lennon could only sleep in his bed. Now his bed is gone, and that means he cant sleep here anymore – he is never coming home.

I gave away Lennon’s bike to another family – a little boy similar to Lennon. I hope him and his family experience as much joy from it as Lennon did.

His walking frame, medical ancillaries and special milk feed were shipped to a children’s home in Zimbabwe.

Escaping from respite! 

The sympathy cards came down.

I found the empty spaces in our home unbearable. I brought a coffee table for our living room to fill the gap where Lennon sat in his wheelchair to watch television.

Lennon’s clothes are still in his drawers, untouched. His drawers are still in his bedroom. It is still Lennon’s bedroom – It will always be his bedroom.

Ian and I went back to Great Ormond St to see Lennon’s surgeon, gastroenterologist and his complex care nurse. To say goodbye and to thank them for playing such a significant part in the 10 years of Lennon’s life.

But also to settle our minds – would the outcome of been different if Lennon had of been transferred to GOS instead of Addenbrookes? Would Lennon of had a better chance of surviving if he had of got to theatre any quicker? Would the outcome of been different if it was Lennon’s surgeon who performed that last chance surgery? – The surgeon who often joked he knew Lennon’s inside better than his outside.

The ‘what if’s’ in my head had gained momentum as the weeks passed – Lennon’s surgeon thwarted them in their tracks.

Lennon’s heart had stopped beating less than 12 hours after he became unwell – the sepsis had already taken over his little body.

Lennon’s surgeon had read the theatre notes from Addenbrookes – the surgeon had written that they were astounded Lennon was still alive considering the entanglement the saw in his small bowel. It was apparent that It didn’t matter who performed the surgery or when he got to theatre – Lennon’s small bowel was beyond saving.

Ian and I left in tears.

We walked around the City for hours. Talking, crying and remembering. I drank too much.

It was heartbreaking to go back and have to hear what we did. But I needed to hear it from the man who knew my little soldiers bowel better than anyone. The ‘what if’s’ have vacated my head.

As well as campaigning to save Lennon’s beloved respite centre, I have been doing small amounts of work here and there. I am enjoying it, and very slowly I’m beginning to find myself again. Build myself a new life. It’s hard – I loved my old life, I enjoyed being a part of the special club I was in. I loved caring for Lennon and I made it my purpose in life to make sure he best quality of life possible. Now I’ve been kicked out and pushed into a new club – The Bereaved Mum club – A club I didn’t chose or want, but I suddenly ended up in.

One thing I do know is that Lennon put me on a path. A very different path from where my life was heading. He took me on a journey, gave me an experience that not many people get from life. I need to carry on down that same path and use the knowledge and expertise that Lennon taught me to help change the system for other families.

December the 3rd – 4 months since Lennon died.

My birthday.

Mummy and Lennon x