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

Quality not Quantity – Life’s Short.

By the time Lennon turned 2 years old, he had spent the majority of his life in hospital – predominantly in Intensive Care. The short amounts of time we did get to spend at home were fraught with anxiety and worry.

Lennon was oxygen dependent, needed regular suction and was fed into a jejunostomy (a surgical feeding tube placed into his small bowel). His stomach contents drained out into a bag and we needed to calculate these fluid losses in order to replace the lost volumes as Lennon had stage 3 kidney failure.

He required multiple medications throughout the day and night including hormone injections.

He regularly stopped breathing and on occasion, needed me to resuscitate him at home.

Lennon had also been diagnosed as being deaf blind.

Lennon and Isla in Rainforest ward, Great Ormond Street Hospital.

Caring for Lennon was an immense responsibility and at times I felt completely out of my depth – my head bopping continuously above and below the surface of stormy waters.

When he stopped breathing, I found my own breath stuck heavy in my chest.

The pressure was enormous and all consuming.

I love Lennon and I would do anything for him, absolutely anything – nothing was too much.

I gave up my life to look after Lennon and keep him alive. I quit my much loved career, hardly saw my friends and rarely left the house or Lennon’s hospital bed side.

Lennon was admitted to Intensive Care for the fifth time when he 2 years and 1 month old.

He was very poorly. He had a central line infection and bronchiolitis. His bowel had failed on Christmas Eve, just 2 weeks prior, and he was surviving on intravenous nutrition.

His existing diagnoses of renal failure and pan hypopituitarism made providing life support for Lennon complicated. The outlook was bleak and the doctors had asked Lennon’s father, Ian, and I to consider turning off Lennon’s support and ending his difficult and problematic life.

Lennon’s fifth time in Pediatric Intensive Care, Aged 2.

We were both horrified at the very thought of life without our little soldier. I wanted so much more for him. I yearned for him to experience life – joy, excitement and happiness. And I wanted others to experience the elation that came along with Lennon’s achievements, and for him to leave a footprint on the lives of other, just as he had on our lives.

Of course, we said No – Lennon would be one to decide when he no longer had the energy to survive.

And in the moment the word No left my mouth, I made a vow to Lennon, and myself, that his life would be as rich and fulfilled as possible.

Lennon slowly improved and eventually came home – still with a complex and time consuming medical routine. It was then that we were referred to Palliative Care at our nearest children’s hospice, Keech hospice in Luton. Keech’s holistic approach enabled us to care for Lennon at home and keep him there.

I spent the next 8 years researching, planning and booking the most amazing experiences for Lennon, and memories for our family. Yes, he was life limited, in a wheelchair, was deaf blind and had a profound and multiple learning disabilities – but why should that be a reason to stop someone from experiencing a full rainbow of life? Why should he miss out?

We took Lennon swimming at Keech Hospice 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.

Lennon loved to swim, he would of swam everyday if he could of.

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 the faster the better. One year Ian went so fast he managed to fall over and tip Lennon’s wheelchair backwards into the ice – I was totally horrified and I’m sure my heart missed a beat. Lennon on the other hand, thought the whole experience was hilarious and seemed to be asking Ian to repeat the whole scenario!

Birthday ice skating.

Disney on Ice became a twice yearly event. When it came to Lennon, you couldn’t go wrong with ice skating and Disney together in one venue – two of his most favorite things!

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.

Playing 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 picking Isla up from school on 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.

My little thrill seeker. Lennon loved skiing – the faster the better!

We desperately wanted to take Lennon to Euro Disney – we knew he would love it! But the professionals had forbidden us to leave the country without trained medical support.

Year after year we applied to The Caudwell Children’s yearly trip to Disney Land, Florida – ‘Destination Dreams’. Every year they take 25 children and their families plus a team of 12 doctors and nurses. It solved our problem of needing to travel with medical support. And in 2015 we were selected!

Destination Dreams was the trip of a lifetime. It took months of planning and we travelled with almost 50kg of medical supplies, a file jam packed with medical notes, letters from doctors and emergency plans. But it was oh so worth it!

We stayed in Give Kids the World and visited the parks. I was shocked that so many of the rides had adapted carts for wheelchair users and ecstatic that for one week Lennon did not have to be excluded from anything. My little thrill seeker absolutely loved the rides! The fast and higher, the more he delighted he was. He adored the characters and was mesmerized when we Mickey Mouse in Magic Kingdom. I think the Electric Parade at Magic Kingdom was his highlight. His permanent beaming face on that trip will remain imprinted in my memory forever.

Meeting Princess Elsa. Magic Kingdom, Florida.

Lennon sadly died on 3rd August 2017, in the same Intensive Care Unit that had asked us to turn off his life support eight and a half years earlier. It was Lennon’s time – his exhausted little body had run out of fight. We had been luck enough to of been under palliative care for over 8 years, and therefore we had talked about the final stages of Lennon’s life many times. Palliative care gave us the knowledge to enable us to make educated decisions over time and not have to make quick decisions during the hardest time of our lives. We had always wanted Lennon to die at Keech Hospice, but unfortunately it wasn’t meant to be. The team at Addenbrookes and the lovely staff at Keech worked hard planning, and Lennon made his final journey to the hospice less than 12 hours after he died. He stayed there until his funeral.

We will be eternally grateful for those extra eight and a half years. Eight and half years packed full of joy, excitement and happiness.

Horse riding with school.

And yes, Lennon did make an immeasurable impact on the lives of everyone he came into contact with. He is remembered by many as ‘The boy with the Midas touch’.

Lennon’s fun packed life proves that palliative care is not about giving up, there are always ways to live your life – in the capacity and time that you have – to the maximum.

Playing football with Daddy.

Quality, not Quantity.

The days after

It’s been a really tough week.

Flowers and cards arrive everyday. Wedding invite replies arrive (we have postponed our wedding) the phone keeps ringing, and life carries on around me.
It’s unbelievably tough to go from doing everything for someone to them suddenly not being there.
The house is so empty, and there is nothing to do. I get up, move from my bed to the sofa or I lie in Lennon’s bed. Thank god for Lennon being at Keech, Ian and the girls.

On Tuesday we returned to Addenbrookes to collect Lennon’s death certificate. Because Lennon arrived at Addenbrookes, went to theatre and died all within 12 hours, his death had to be reviewed by a coroner. This meant that it was going to be quicker and less hassle for us to register his death in Cambridgeshire. It was difficult to go back. The only times we had ever been to Addenbrookes was when Lennon was in PICU. Plus we had last left there only a few hours after Lennon had died.
As expected, the causes of Lennon’s death were septic shock, bowel necrosis and Volvulus.
Holding your child’s death certificate in your hands is a surreal feeling. To be honest though, every minute since we left home on that Tuesday night has been surreal. Almost like a dream, like I’m watching myself.

We visited the Funeral Directors to arrange Lennon’s funeral. We decided on a plain white casket for Lennon and cremation. The service will be held at a crematorium and we will celebrate Lennon’s life afterwards – share stories and send balloons to the sky.
We also discussed with the girls what they would like to put inside the casket with Lennon for his final journey and Isla has decided that she would like to keep Lennon’s precious ‘cuddles cat’ to look after for him.

We have been in and out of Keech all week to spend time with Lennon. I find this comforting – I’m happier when I’m close to him.
We had asked if they could take some professional black and white photos of Lennon in his page boy outfit with his favourite toys.
They are beautiful pictures, Lennon looks so smart and peaceful. They also took some shots without his face in, with the thought that we could add them to our wedding album when we finally get married and he could still be a part of our wedding album.
The girls at Keech also took hand and foot moulds and fingerprint moulds. They have made hand and foot prints on canvas, and even made canvases that we can add the girls hand and feet prints onto, alongside Lennon’s.
I want as many memories as possible. I don’t want to forget a single little thing about my little soldier – that is now my biggest fear. Forgetting.

Our beloved community nurse came round for the last time. This was hard for me. The people that came into our home and our lives to help us, became my friends. The time and energy I put into caring for Lennon meant that I rarely saw my friends, therefore nurses, doctors and carers became my friends.
Nic had been a part of our lives since Lennon was a baby, she had seen the girls grow up. She had witnessed Lennon’s changes and improvements over the years. I loved sharing Lennon’s achievements with her, and I felt her pride in him.
She had become a pro at taking blood from a fast moving target – She had narrowly avoided pricking herself when accessing Lennon’s port in the last few weeks!
She had helped get us to Florida and heavily contributed to a hefty medical file that travelled everywhere with Lennon. She taught me CPR and how to take blood, helped with bowel washouts, and filled my bin up with medical waste!
But above all, she listened to me and my worries, calmed me down when I panicked, and talked me round when I sobbed down the phone.
She knew Lennon so well, and she knew that the Lennon on paper was not the ‘real life’ Lennon.
She spent almost 3 hours with us, talking over that day and the last 10 years. I didn’t want her leave.


Nic – we wouldn’t of got through this without your support, we wouldn’t of had all those years of no hospital stays without you. I can never thank you enough, and I will never forget what you have done for us all.

On Thursday afternoon Lennon’s casket arrived at Keech.
I broke down as soon as we walked into the room. My baby boy in a white coffin. It seems so much more ‘real’ now. The words inscribed on the lid made me sob. The way the girls have placed his toys and Mickey blanket on top and the love that has gone into making the room look so special is touching.
Ian and I sat with him and noticed how long his coffin was. He had grown so much taller in the last few months.

I feel so numb. The pain in my chest is still there, and the sorrow and sadness feels deeper every day.
I look forward to bedtime as I know for that one second when I wake, its like all this never happened and Lennon is still here.
Getting through every day feels like a battle, and when the day has ended, it is just another day without Lennon. He has left such a huge gapping hole in our lives, that I can never envisage being even partly filled.
I miss his baby soft skin, his thick hair with the coarse patch at the back, his clicking and quacking. I even miss the bruises on my legs, which have already faded to nothing.
I sit and watch videos and look through photos, in the effort to keep him alive in my head. And I wonder how will life carry on without Lennon??

Previous blog post – Tributes to Lennon

Goodbye

Tuesday 1st August 2017, Lennon, Isla and Florence spent their first day at CHIPS summer playscheme. The girls there were amazing and happy to have Lennon there after his newly formed ileostomy.
He had a lovely day, playing with his sisters, walking around in his walking frame and playing at the sink and in the sensory room.
He came home and watched his favourite yo gabba gabba on the television whilst holding my hand and slapping my arm.

In the evening, Sian our continuing care nurse arrived. We bathed Lennon, did a full bag and dressings change. Lennon loved his baths – he often crawled or lead us to the bath. He was also known to climb into the bath when it was empty and lie in it! He loved to just stand at the taps and put his hands and face under the running water.
Lennon always was a true water baby.


The Reverend came to talk to Ian and I about our wedding, and Lennon played on his floor mat happily with his ocean drum and Argos catalogue until bedtime at 8.30pm.
Isla and I got into bed with him and he was so happy. Massive smiles and real belly laughing. It was so lovely, and in hindsight we realised he was saying goodbye to Isla – the sister he was totalled besotted with.

At 9pm we went into Lennon’s bed and he had disconnected his milk from his jejunostomy tube. This wasn’t an unusual occurance. We had to wash and change him and change his bed sheets which inevitably woke him up. Lennon hated being woken up (just like his mummy!)
At 10.15pm we checked on Lennon, he was not happy and we thought he was still grumpy from being woken up. After 20 minutes he began seizing. We gave him rescue meds, which had no effect so we rang for an ambulance. We were blue lighted into Lister resus with a full crash team waiting for us.

They managed to stop the seizures with some IV Lorazepam but Lennon remained unconscious.
He quickly deteriorated overnight until 9am Wednesday morning when our amazing team at Lister made the decision to crash call and put Lennon on full life support. CATS arrived and quickly intubated Lennon. Not long after being intubated, his heart stopped beating and the doctors performed CPR for 2 minutes. Lennon stopped breathing many times in the early years. More times than I can remember. But his heart had never stopped beating before then.

We left Lister and made our way to PICU Addenbrookes on full life support and maxed out on blood pressure meds. His kidney had completed failed and they suspected that Lennon had a mechanical bowel obstruction.

We arrived at Addenbrookes and as soon as Lennon was stable and they had switched over all the machines they took him down to CT. The scan showed his bowel was twisted and compromised but they couldn’t tell how much had died. We all made the decision for him to go to theatre, despite not knowing if he would survive surgery as he was on maximum support with nowhere to go – we had to give him that one last chance.
They opened him up and took his bowel and stomach out. The surgeons said there was way too much bowel that had died and they were surprised that he was still alive and fighting after what they saw. They stitched him up and kept him alive whilst Ian and I tried to prepare to say goodbye to our precious boy.

We desperately wanted to get Lennon to our Children’s Hospice, Keech. The girls at Keech, absolutely adore Lennon and I always hoped that the end would be there or at home and not in intensive care. The doctors kept telling us that he wasn’t stable enough to travel and we would risk losing him on the journey. A risk neither of us was willing to take.

At 2.30am on Thursday morning the blood pressure meds weren’t enough and they were pumping him with more and fluid just to keep him alive. So at 3am we made the decision not to prolong the inevitable any longer. Lennon had gone, I think he left us before we left Lister. The intensive care consultant who has been with us the whole time since we arrived (even scrubbing up and going into theatre with Lennon) took the breathing tube out and Lennon passed away instantly. Peaceful and dignified.

We got to spend the next 3 hours saying our goodbyes. It wasn’t long enough. But all the time in the world wouldn’t of been enough. I lay on the bed next to him placed his arms around me and held him tight. All the time trying to put my warmth back into his little body.

We were in a side room and the whole experience was very peaceful and calm.
We had 2 nurses with us. 1 who had looked after Lennon when he was a baby on Bluebell Ward, Lister. And the other who had done a nursing placement at Lennon’s school. It was fate and we will be eternally grateful that he had people who knew his journey caring for him in his last hours. They took out all his lines, cut locks of his hair and made hand and foot prints.

He was moved to his beloved Keech Hospice that afternoon. And will hopefully remain there until his funeral.

The girls there are going down to the Meadow suite all the time and taking really good care of him. Spending time with him and talking to him. They dressed him in his page boy outfit – he looked so smart and my heart shattered again knowing that he will no longer walk me down the aisle when we get married.

We are lucky that Lennon spent time at Keech over the last 8 years and had built up relationships with everyone there and 2 of our continuing care nurses who looked after Lennon at home now work there.
It feels so comforting to be there, close to Lennon – like a great big hug. The Keech girls are also taking care of us, making sure we eat and drink, helping us with funeral plans and making sure we are as involved as we want to be.


Words cannot begin to describe the pain we are feeling, it hurts to breathe. Every morning I wake up for the first second, I forget that Lennon isn’t here anymore and then it hits me like a bus. It feels like I’m loosing him all over again.
The thought of spending the rest of ours lives without Lennon seems unbelievable. He was such a huge part of our family and for the last 10 and half years my whole life has revolved around Lennon. I gave up everything for my little soldier – my career, going out with friends, money, holidays. And I don’t regret that at all. I would live the last 10 years over and over again if I could.

We are so incredibly proud of our little soldier. The odds were always stacked so highly against him right from the minute he was born, yet with every single step of his journey he fought so hard to stay alive. Some times were more difficult for him, but he always bounced back. He was like a cat with 9 lives!

We will treasure every single second of the last 10 and half years and all the amazing memories we were able to make with Lennon in our lives.

Life will never be the same, the light in our life has gone out.

“If there’s ever a tomorrow when we’re not together.. there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we are apart.. I’ll always be with you.”
Winnie the Pooh.

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