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have achieved since we first received those letters back in June 2017 telling us that funding to the service was being withdrawn.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.

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.

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. 

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. 

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…..?

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.

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