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have achieved since we first received those letters back in June 2017 telling us that funding to the service was being withdrawn.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!
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.
On Sunday I sat listening to BBC5Live Investigate with tears trickling down my cheeks. I felt the pain of Hayley and Charlotte describing their lives because I have walked a similar journey.
You cannot begin to imagine that journey if you have never walked in those shoes. Trust me. Since Lennon has died I now know what a ‘typical’ life is. What it is like to get through a day on 8 hours sleep, not have to make life or death decisions on no sleep, to not feel like you are solely responsible for keeping your child alive every second of every day.
The responsibilities of living with a child who requires medical care 24/7 are immense and the weight you carry is beyond heavy. It’s unimaginable.
Lennon had always required a high level of care at home – so much so that neither Ian or could work. Our care package was always good (not brilliant) and generally we managed ok. We were lucky enough to receive 36 nights a year respite at Nascot Lawn – an NHS nurse led respite provision and that made all the difference to how we coped. We knew that we had one weekend every month when we could catch up on sleep, spend time with Isla and Florence and prepare ourselves for the month ahead.
In the last few months of Lennon’s life everything changed. We spent a long period of time in hospital and when Lennon was discharged his needs increased to a point where we felt like we were drowning. Our care package was increased but that only touched the sides.
We couldn’t cope and that broke my heart. All I wanted was to be able to care for my child and look after him myself, but I needed constant help to be able to do that.
And then a bombshell was dropped onto us. We were told that Nascot Lawn was closing due to a decision made by Herts Valley CCG to withdraw funding to the service.
We instantly knew that there was no way we would be able to cope without our weekend off every month, and that frightened me. My fight the Save Nascot began.
I spent the last 6 weeks of Lennon’s life campaigning alongside other parents against this awful decision whilst still providing him with the 24/7 care he needed.
I resent that hugely. I look back and wish it hadn’t of been that way. I hate that I look back on last weeks of my beloved sons and remember the overwhelming fear that I had at that time.
And that’s why the Together for Short Lives report End of Life Care: Strengthening Choice means so much to me.
For families like mine, high quality children’s palliative care is essential. Without it, we just couldn’t have survived. We need the government to fulfil its commitment and help children and families make the most of every minute.
When you have a life limited child you should not be fighting for help. You should be spending quality time with your children making memories – you never know how long you will have them for.
Good palliative care and short breaks for life limited children should not be a postcode lottery, families should not have to rely solely on charities to enable them to survive and they should certainly not be begging for what they need.
I could not fault the care Lennon received from our local Children’s Hospice Keech, especially after he died. They were always on the end of the phone and they looked after Lennon at short notice whenever we had a major crisis’. But they are under huge pressures – Keech need to raise over £6 million every year to enable them to care for their patients and families.
We were one of the lucky ones. Most families like ours do not have out of hours support or access to regular short breaks.
The Together for Short Lives inquiry found that 46% of Clinical Commissioning Groups aren’t implementing the Governments end of life care commitmentand have no plans to do so.
Our government must take urgent steps to ensure the support that children with life-limiting conditions need is delivered so that other parents can look back on their child’s final weeks and see happiness, not resentment.
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.
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.
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.
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.
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.
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.
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.
On the 3rd February 2018 it was 6 months since our darling boy departed life.
6 months without hearing his loud clicking noises or his cheeky belly laugh.
6 months without seeing his big glassy blue eyes or his arms flapping wildly.
6 months of not climbing into my little soldiers bed every night to squeeze him tightly and kiss him goodnight.
The pain of living my life without Lennon increases everyday. I miss him. I miss my old life. I miss being Lennon’s Mummy. It hurts. It is still a deep, heavy pain that I cannot describe.
I’m beginning to realise that grief doesn’t leave you – It becomes a permanent fixture in your life. You have to learn to co-exist with grief.
A few nights ago I had a vivid dream about Lennon. So intense and lifelike that for the first few seconds upon waking, I thought it was true.
I dreamt that Lennon had returned to life. I didn’t know how, but he was back with us, where he belongs.
I thought how lucky it was that we had kept his wheelchair – we could take him outside.
Lennon loved to be outside.
I was pushing Lennon in his chair up a steep hill, but he was too heavy and we couldn’t reach the peak.
Then he was back in his bedroom, lying in his beloved fishbowl bed. I had forgotten to administer his medications. I was angry and disappointed with myself that I had forgotten my strict, daily routine and worried that he would become poorly because of a stupid mistake I had made.
I subsequently moved Lennon’s large medication unit into his bedroom to help me remember.
It was all a dream. When the cold, unwanted truth hit me, I sobbed.
I was crest fallen that he wasn’t back, he is gone. Gone forever.
I was also saddened by the thought that I have lost my skills. Skills that I had proudly built up over 10 years. Procedures that I will never carry out again. Replacing a surgical jejunostomy tube, passing a nasal gastric tube, deep throat suctioning, replacing a gastrostomy button, putting on an ileostomy bag, accessing a port-a-Cath and taking blood.
All that expertise built up over so many years. I was proud of the responsibility I had bestowed upon me – yes, the pressure of it was immense and overwhelming, but being competent in all the procedures Lennon needed to enable him to stay at home with his family and away from hospitals was incredibly gratifying.
Keeping Lennon at home was very important to me.
Life has changed so much.
It is becoming more and more apparent to me that I am no longer a part of the ‘Special kids mums’ club. I am no longer living an extraordinary life.
I am a bereaved mother.
I can’t go back – no matter how much I wish that I could.
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.
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.
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.
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.
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.
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 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.
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.
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.
Christmas Eve 11 years ago – The first time I held my baby boy. He was 19 days old. In a hospital across the other side of London and we were still unsure if he would survive.
The pain I felt then was incredible.
All I wanted for Christmas was to hold my baby and to bring him home. For him to survive and experience a life outside of his Perspex box, monitors, tubes and needles.
It is nothing compared to the pain I am feeling now. Facing my first Christmas without my first born child.
All I want for Christmas is Lennon. To see his face beaming at the sights of Christmas lights, feel
his hands slap me on the back as he watches his sisters getting excited for Santa and to watch him throwing spoons across the table while we eat Christmas dinner.
In the run up to Christmas, every year my thoughts are consumed by our time spent at Chelsea and Westminster. Sitting over Lennon’s Perspex box, the monitors flashing and singing. Walking up and down the Fulham Road in between the tube station and the hospital, day after day. Christmas lights and charming decorations everywhere.
The shops full of gifts, and passers by full of Christmas cheer. The gigantic Christmas tree in the hospital lobby.
Entering the hospital with promise for the day ahead. Thoughts that today would be the day my baby would turn this around.
Leaving the hospital in a cloud of dark and sadness, reliving the awful events of each day.
Ever since Lennon’s birthday I have had an urge to return to Chelsea and Westminster. To retake my steps and see Christmas on the Fulham road.
Why? Because I am looking for something. I don’t know what. Maybe memories. But why am I looking for sad memories and not happy ones?
Maybe because I have been consumed by sadness since Lennon died. There are glimmers of happiness there, occasionally. I try to hold on tightly to them, but they slip through my fingers so very quickly.
If I could hide in bed for the next few days, believe me I would. But I won’t – my girls need me. Ian needs me. My girls deserve to have the most fantastic Christmas and to know that their brother will be looking down on them, expecting them to be enjoying every second of Christmas. For themselves, and for him.
He will be the sparkle in their eyes while they are opening presents, playing games and spreading joy.
I’ll look for that sparkle and hold on to it tightly.
Today is your 11th Birthday – The first time we will celebrate your Birthday without you.
I haven’t ordered the balloons that you loved, or the fabulous Yo Gabba Gabba cakes that you could never even taste.
I haven’t been out to the shops and collected a plethora of catalogues for you to flick your way through.
I haven’t got your big birthday badge and the lights we decorated your wheelchair with.
We celebrated each one of your Birthdays as if they would be your last. Just incase.
I’m so glad we did.
You never really understood Birthdays – but year after year, as you grew older, I think you got used to knowing it was ‘your’ day. A day that was specially made for you.
We kept the day the same every year, in hope that the routine would let you know it was your Birthday.
We would send you off to school on the bus – with your huge birthday badge, lights and balloons. Just to ensure that everyone at school made a big fuss of you!
You would wear the fabulous birthday cake hat at school and your friends would sing you a ‘Happy Birthday’ in assembly.
You loved assembly’s, and you most certainly loved being fussed over.
We would collect you from school. I’m sure at this point you would know what was happening next – We would take you to Van Hages and Ice skate for your birthday treat.
You loved Ice Skating. I can picture your face whilst sliding across the ice in your wheelchair, your wide eyes, big beaming smile and flapping arms.
One year Daddy fell whilst pushing you and your wheelchair flipped backwards onto the ice. My heart skipped a beat, worried you were hurt. We picked your chair up and all the while you were laughing so hard you could barely catch your breath – You wanted to do it all over again!
Always the thrill seeker.
We would walk around Van Hages admiring the decadent Christmas decorations and lights. Every year you and your sisters would each chose a decoration for our tree.
We would go home, light your birthday candles and sing you Happy Birthday. You were never able to blow out your candles yourself, but you always displayed great delight in watching your sisters blow them out for you.
Once you were in bed, Daddy and I would reminisce about the day you were born and wonder how on earth you survived.
With each year that passed, we grew prouder of your fight for survival and we felt so incredibly lucky to of celebrated yet another birthday with you.
I treasured your Birthdays like gold dust. Each one more precious than the last.
Last year we went all out for your 10th Birthday.
10 whole years with you.
We considered you reaching 10 the most amazing achievement!
We threw you a massive party – a UV disco. You loved ultra violet lights! So many people came to celebrate with you.
My only regret was that you were poorly. Your colon had failed by that point and you were in so much pain. I wish so much for you to of enjoyed your very last Birthday with us.
Today, I will make you a birthday cake and your sisters will blow out your candles.
Today, I will blow up your balloons, we will write you messages and send them to the sky for you.
Tonight, we will go Ice Skating for you, like we always did on your Birthday.
When Daddy falls over we know you will be laughing with us.
Today, like every other day since you died, I will think of you and wonder where you are. Wonder whether or not you are happy and pain free now. Able to celebrate your special day.