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have achieved since we first received those letters back in June 2017 telling us that funding to the service was being withdrawn.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

The need to strengthen choices in Children’s Palliative Care. 

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.

Preparation for bath time.
Lennon’s medical cupboard.

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.

Lennon helping to carry his notes to an outpatients appointment. (Said notes ended up all over the lift floor seconds after this photo was taken!)
Lennon recovering after his ileostomy surgery.

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.

Isla and Florence helping to drop Lennon for his last ever stay at Nascot Lawn the weekend before he died.

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.

Lennon playing with Mummy and Daddy after being interviewed for BBC Radio 4.

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.

Meeting Buzz and Woody at Hollywood Studios, Florida.

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.

Lennon and Isla enjoying the gardens at Keech Hospice.

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 commitment   and 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.

Daddy’s favorite photo of his beloved Son x

Find out more about the Together for Short Lives APPG enquiry report: https://www.togetherforshortlives.org.uk/changing-lives/speaking-up-for-children/policy-advocacy/all-party-parliamentary-group-for-children-who-need-palliative-care/

And you can listen to BBC5Live Investigates programme featuring Hayley and Charlotte here:  https://www.bbc.co.uk/sounds/play/m0000tmp

But maybe grab some tissues first ….

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.

The hidden depths of the NHS

I have been asked a few times now to write a blog post to celebrate the NHS turning 70. If you have stumbled across my blog before you will know that without the NHS Lennon would not of survived much past his birth.

Lennon at 7 days old.

I’ve thought long and hard about which of our experiences I should write about to commemorate NHS70 – Neonatal Intensive Care, Great Ormond St, Paediatric Intensive Care, the CATS retrieval team, our local hospital and community nursing team, Nascot Lawn, Lennon’s school nursing team, the Children’s Continuing Care team….. the list goes on.

Lennon ‘helping’ to carry his most recent set of notes!

I’ve already shared some of those experiences and I wanted to chose something a little different – a side of the NHS that people maybe do not think about.

Dying.

When we think about the NHS we think of peoples lives being saved, pioneering treatment, miracles. We don’t often see the other side of the NHS, but it is there and we shouldn’t ignore it.

When I think back to the care Lennon received from the NHS throughout his life, the time I think about most is the day he died. I can not fault the care and compassion that Lennon, Ian and myself received in the final few hours of Lennon’s life.

Sleeping post theatre.

I remember the look on the consultants face as the surgeon told us that there was nothing more they could do for Lennon. I’ll never forget the tears rolling down her cheeks when she came in at 3am and removed the ventilator tube that was keeping Lennon alive. It was almost like she could feel our pain. She somehow understood exactly how much Lennon meant to us and how hard we had battled to keep him alive for so long. She knew what we had given up in order for our little soldier to live his life.

I could not fault the nurses that watched over him in his final hours, they were incredibly calm and gentle. They washed and dressed Lennon in clean pyjamas, made sure he was comfortable and kept him alive until we were ready to say our final goodbyes.

They made space in Lennon’s bed for me to get in and hold onto him.

They listened to us and made sure they knew our wishes down to the finest of details. They gave us the space and time that we needed and they understood how much that moment would stay with us for the rest our lives.

After Lennon died, the nurses helped us take foot prints, hand prints, and locks of hair. They let us stay with him as long as we needed to.

They both knew Lennon. One had looked after Lennon when he was first transferred to the children’s ward at Lister aged 6 months. It must of been so hard for her to watch him die. We bumped into her at the end of her shift. Her eyes welled up with tears as she told us she had personally taken Lennon down to the morgue and then rang around to break the news to the professionals involved in Lennon’s care. I can imagine the amount of strength she mustered to do that, just so I didn’t have to.

Sometimes the smallest of gestures have the biggest of impacts.

The staff at Addenbrookes knew I wanted Lennon to be at Keech as soon as possible. I didn’t want him to be alone. They worked tirelessly to make it happen and Lennon arrived at Keech just 12 hours after he had died.

It takes a certain kind of person to care for a dying child and their family.

In the weeks after Lennon died we received letters, cards, flowers and phone calls from all over the NHS. Consultants and surgeons from Great Ormond St and Lister, nurses who had cared for Lennon, therapists who had worked hard with him and seen him flourish and develop over the years. They all took time out from their busy lives to remind us how amazing our son was, how he fought the odds and how they would miss him dearly. None of them had to do that, but they did.

The cards and flowers we received in the days after Lennon died.

It was clear that Lennon’s death had affected many people within the NHS. We all think of doctors and nurses as life savers, and they are. But they also see a sadder side of the NHS and sometimes have to admit defeat and watch their patients die.

Our NHS saves lives, but it also grieves the lives it couldn’t save.

We must not forget the impact that has.

Thank you to the NHS for giving us 10 amazing years with our little soldier Lennon, and for being there when it mattered the most.

We will be eternally grateful ❤️

Mummy, Daddy, Lennon x

One in a Million

Lennon first saw a Geneticist when we was 6 months old and in the Neonatal Intensive Care Unit at Great Ormond St.

Lennon was 12 weeks premature and up until he rapidly deteriorated and became ventilator dependant, aged 5 months, the doctors and nurses involved in his care had all thought his medical problems were a result of being born too soon.

It wasn’t until Lennon’s first admission to GOSH, when many professionals from different specialist teams came to examine him, that it was suggested Lennon most likely had a genetic condition.

Lennon in Intensive Care.

That was just the start of our Genetic journey into finding a diagnosis for our little soldier – and the beginning of my love hate relationship with Google.

Over the first 4 years of Lennon’s life, he underwent every genetic and metabolic test available in the UK. All sorts of diagnosis’ were mentioned over that time – Schinzel Giedion syndrome, Rett syndrome, Mitochondrial disease, Pallister-Killian syndrome, the list goes on.

Lennon had blood samples, DNA, salvia and skin samples, muscle biopsies, bowel biopsies and lumbar punctures taken.

At Great Ormond Street hospital undergoing a round of testing.

I became obsessed. Google was my best friend, yet my worst of enemies.

I rang the Genetics team on a regular basis, pestering anyone who answered the phone for test results.

All the tests came back negative including a DNA micro-array analysis.

Lennon was then put on the DDD study. Over the years we never had any results from it, despite my many information seeking phone calls. When the study finished in June 2017, we were told that Lennon was never signed up because his sample processed as ‘incomplete’ and was never followed up.

Subsequently, we were invited on to the genome 100k project and we had an appointment booked with Lennon’s Geneticist at GOSH for October 2017, for myself, Ian and Lennon to provide DNA samples and sign up. But Lennon died in August, just missing out on that appointment.

My quest to find a diagnosis for Lennon was beginning to consume my life.

Until one day when I sat down and really thought about it. What would a diagnosis change? What would a diagnosis mean? How would a diagnosis change Lennon’s life and how we help him to live it?

I slowly came to the conclusion that a diagnosis was just a word. A word that would explain the wonder of Lennon. Just one word to write on forms and tell people.

But that was all.

That one word wouldn’t change Lennon and it wouldn’t change how we looked after Lennon – nothing would be any different.

Enjoying the FunFair.

I began to forget about a diagnosis and focused my energies on researching, planning and booking the most amazing experiences for Lennon, and memories for our family.

Yes, he was undiagnosed and no one really knew what the future really had in store him.

Yes, Lennon was in a wheelchair, was deaf blind and had a profound and multiple learning disabilities and complex medical needs, but why should any of those factors be a reason to stop someone from experiencing a full rainbow of life? Why should Lennon miss out on living a full life?

We took Lennon swimming as much as we possibly could – this was always a mammoth task. Changing Lennon’s dressings, keeping an eye on his dropping blood sugars, and keeping him warm was difficult but his excitement and enthusiasm to be in the water made all the stress of the situation melt away.

We went Ice skating as a family every year on Lennon’s Birthday in December, it became a family tradition. Lennon loved ice skating and roller skating – the faster the better!

Speeding around the rink at Rollercity.

We fundraised and purchased a walking frame and a special bike.

Lennon spent hours toddling around in his walking frame when he was well, and in the summer, we used to stand his walking frame in a paddling pool and he would splash away with such delight.

Splashing in the paddling pool.

The bike was incredible – it was a life changer for Lennon. He was a real thrill seeker and was enraptured by speed. Ian would take him for long bike rides, speeding through long, windy country lanes. Lennon flapping his arms and screaming with delight!

Lennon thoroughly enjoyed his bike.

I found a company who provided ski lessons to people with a disability. This was a little trickier and took a lot of planning. Lennon’s pan hypopituitarism meant his body disagreed with cold temperatures. But we found ways to work around that. Skiing became a favorite activity for Lennon – the buzz of sweeping down the slopes enraptured him. His face exuded excitement and happiness.

We also took him down the mini slope in a donut ring!

Neither Ian nor I have ever skied, yet our disabled son has.

One of Lennon’s favourite activities. 

We will be eternally grateful for the 10 and a half years we had with Lennon. A short life, but most certainly a life packed full of joy, excitement and happiness. And Lennon’s full life serves as a reminder that no matter what your disability or diagnosis, there are always ways to live your life – in the capacity you have – to the maximum.

Horse riding with school.

A few weeks ago I spoke to the Genetics team at GOSH. They informed me that they had stored various samples of Lennon’s – including his DNA, meaning that Lennon can still join the genome 100k protect. Ian and I have an appointment in March to provide our own DNA to be submitted alongside Lennon’s and to sign the forms.

And so the quest for Lennon’s diagnosis continues. Lennon truly was one in a million, and I’m certain when someone eventually finds a diagnosis for Lennon it will be extremely rare!

Our family of 5 x

6 months

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.

Lennon in bed. He loved sleeping at home in his own bed.

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.

Lennon at his ‘happy place’ the village ford. He could sit for hours watching the ducks and the water flowing underneath the bridge. 

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 loved watching him sleep, especially when he put his hands under his head.

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.

Preparing Lennon’s medications during a hospital stay.

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.

Forever.

I can’t go back – no matter how much I wish that I could.

Lennon and Mummy x

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

First Christmas

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.

Ian and I holding Lennon for the first time in NICU Chelsea and Westminster.

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.

Enjoying the Christmas displays at Van Hages.
Christmas Day 2016.

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.

And me.

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?

Christmas 2009.
Visiting Santa at Nene Valley Railway, 2011.
Christmas Day 2014.

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.

Christmas 2016.

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.

Magic Kingdom, Florida, December 2015.

Forever 10 years old

Dear Lennon,

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.

Lennon spent his 9th birthday at Universal Studios in Florida!

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.

Lennon’s Day.

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!

Lennon’s 7th Birthday.

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.

Ice Skating on Lennon’s 10th Birthday.
Ice Skating on Lennon’s 6th Birthday.

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.

Lennon’s 1st Birthday party.

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.

Lennon’s 9th Birthday in Florida – By far his most magical birthday!

Last year we went all out for your 10th Birthday.

10 whole years with you.

We considered you reaching 10 the most amazing achievement!

Singing Happy Birthday.

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.

Before the big ’10’ party.

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.

Lennon’s day.

Mummy and Lennon on his 10th Birthday x