In a Different Life

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

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

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

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

Different.

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

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

Lennon’s first day at school.

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

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

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

That day was never meant be.

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

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

But I am not doing that either.

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

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

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

Lennon having fun at school, his favourite place.

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

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

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

Almost a year …

The clock carries on ticking and life moves on.

A life without Lennon.

Whatever I do, it is always with Lennon at the forefront of my mind. He is still my first thought when I awake to a new day and my last thought before I fall asleep.

Sleep has not been my friend for the last few weeks though. I lie awake having flashbacks of the days leading up to and after Lennon’s death. When I finally do fall asleep I toss and turn and wake up crying.

—————

Quite a lot has happened over the last couple of months.

I have a part time job for the NHS in Urgent Care. It’s only 10 hours a week at the weekends but I have found it to be a welcome distraction from my grief – I don’t feel so sad when my mind is occupied.

My blog won a BAPS (Bloody Awesome Parents) award for ‘Best Newcomer’. The very gorgeous Gethin Jones presented me with my award and I cannot tell you how surprised I was! Ian and I had a lovely evenings amongst families who also walk a similar path to us.

Gethin Jones presenting my award and me trying my best to hold my tears in!

I assisted in delivering a petition to Number 10 on behalf of The Disabled Children’s Partnership.

Delivering The Disabled Children’s Partnership’s short breaks petition to No10 Downing Street.

I met with Nadhim Zahari, the Minister of State for Children, Young People and Families. I was lucky enough to talk to him about the lack of care for complex children who fall in the gap between health and social care. And how there needs to be clear guidance on which body is responsible for them.

Meeting Nadhim Zahawi at Portcullis House, Westminster.

Isla won ‘The Hinton award’ at school – an award given to the KS2 pupil who has shown real grit and determination to overcome challenges throughout the year. I am overwhelmingly proud of her, she’s had such a tough year.

Isla with her award.

Two of our Nascot Lawn families featured on BBC1 Panorama – the programme and an online version. It made difficult viewing for Ian and I. We were taken back to the extraordinary life we led with Lennon and it was a stark reminder of just how different and ordinary life is now.

Lennon’s school held a memorial morning for Lennon and unveiled the most perfect art display dedicated to him and his love of swimming. The whole morning was so well thought out and planned, with Lennon’s teachers singing and playing guitar – Lennon loved it when Nathan played his guitar! It felt comforting to return to Lennon’s favourite place and see all the staff again. I was so pleased to hear that they still think and talk about Lennon everyday, he is still very much a part of the school.

Lennon’s memorial at Amwell View school, at the entrance to the swimming pool.

The amazing charity Post Pals invited us on a weekend away to Chessington. It was a fun packed weekend and the girls thoroughly enjoyed it. We had the most amazing experience feeding giraffes and discovered that Florence is almost as much of a thrill seeker as her brother after insisting on going on the Vampire ride multiple times!

Feeding the giraffes at Chessington World of Adventures.

Better Removals are naming one of their new removal vans ‘Lennon’ in memory of our little soldier.

And I have given a few talks on my life and experiences as a Carer and mum to Lennon and really enjoyed it – I could talk about Lennon all day everyday!

One of the slides I use in my presentations to show the importance of communication between professionals.

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Blogging and campaigning for Nascot Lawn and disabled children has given me a purpose since Lennon died. I would give anything to have my old life back with him. That wish will never come true, but the next best thing is to share Lennon’s experiences in life, with the aim of educating others to help improve the lives of children similar to Lennon.

Lennon’s journey can educate countless people and change so many lives. Now he is not here, it is my job to share Lennon’s story and help others to learn from him.

A future without Lennon feels totally unbearable to me, despite not seeing him for almost year. But I need to find a way to survive the rest of my life, and the only way that seems possible at the moment is to keep Lennon’s memory alive in any way possible.

I still have moments when I wish that I could ‘jump off’ this ride, just for a minute to catch my breath. This year has gone way too quickly. Tears spring to my eyes and a lump appears in my throat at the mere thought of it being a whole year since Lennon was encapsulated inside our little family.

This week we will travel down to Torquay as a family of four, but we know Lennon will be with us in spirit. Our last family holiday was summer 2016 in Torquay – I’ll never forget how much Lennon enjoyed it and how much fun we all had. The weather was glorious and we managed to get Lennon into the sea. Believe me it wasn’t easy and we narrowly avoided an adrenal crisis from the cold water but it was worth it just to have those memories to hold on to now.

Lennon enjoying the sea.
Full dressing change in his wheelchair!

Ian and the girls don’t want to be at home on the anniversary of Lennon’s death. They don’t want to remember the hurt, shock and deep sadness we felt in the weeks after Lennon died. They don’t want to return to the darkness we all endured.

I have to respect their wishes and needs. The next best place to home is Torquay and the warmth of all the happy memories it holds. Lennon was always so content and relaxed at the coast. His little face always glowed in the sunshine.

I have no expectations for the day. I hope to be able to get out of bed, dressed and out of the flat and give my girls a good day.

A day that Lennon would of enjoyed.

A day we can reminisce over the amazing memories we have of Lennon, our little soldier.

Family of Five, Always.

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.

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

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.

Who cares for the Carer?

This is a post that I wrote back in June 2017 for Carers Week. The week we first found out our beloved NHS respite unit, Nascot Lawn, was due to close as a result of HVCCG withdrawing their funding.

Lennon sadly died in August 2017 and I am no longer a Carer – but I was for 10 years, and I would of been for another 10! Despite it being extremely hard work and all consuming, I loved looking after Lennon. My life had a purpose – keeping my son alive and happy, and making sure that he reached his full potential in life.

………………

As a Carer providing 24 hour round the clock care to my son I get paid 37 pence per hour. Yes you read that correctly – 37 pence.

I was once told If we put Lennon into a residential

Placement for 48 weeks of the year it would cost in excess of £200k! (Mainly because his medical care is so complex.)

I have no senior, no union, no one who takes over from me, no back up when I’m ill or my other children need me – it’s just me on own. Don’t get me wrong, Lennon’s dad is amazing, but he has a full time job and he can’t be my safety net.

Nurses get paid a pittance for what they do, but they clock on and off – I don’t. I’m a nurse for 24 hours a day 7 days a week, would that be allowed in any hospital??!

Even when Lennon is in hospital I am still providing him with all the medical care he needs, I don’t get a break as I’m not allowed to leave him alone on the ward in the care of the nursing team as he is too complex. Yet I have no nursing or medical degree or training.

I am responsible for a gastrostomy, jejunostomy, ileostomy, a 24hour feed, making up extra fluids, a ton of medications including controlled drugs and injections, strict fluid input and output measuring and charting and deciding what is a medical emergency and what isn’t. Ordering in and managing supplies from 6 different companies. I have to remember appointments, deal with professionals, fill out untold amount of forms, attend meetings.

I also have to be my child’s eyes, ears and communication aid. He communicates through me.

I have to be on the top of my game always. I cannot take my eye of the ball ever, not for one second.

Is this fair?

He is my son, and it is my duty to care for him whatever his needs are.

I feel carers deserve a little more acknowledgment and respect for what they do, day after day. Most of us give up our whole lives for the person we are caring for.

I gave up my life in order to give my son the life he deserves.

Mummy and Lennon, during a stay at Great Ormond St.

Memories – Prematurity Is

I wish I had kept a diary of Lennon’s Neonatal Intensive Care (NICU) days.

Looking through the many photos through that period of my life, it feels like only yesterday we were on that multi hospital rollercoaster ride, yet in another way it feels like it was the 11 years ago that it very nearly is.

I was a sad person then – devastated that my body was unable to carry my precious baby boy to term. I just about managed 28 weeks of pregnancy. Frightened that my baby wouldn’t survive the awful lifesaving support and treatments he needed to undergo just to give him that small flicker of a chance at life.

I was tired and desperately sad.

Lennon was transferred from the QE2 Hospital in Welwyn Garden City to Chelsea and Westminster when he was just 2 days old. He needed an oscillating ventilator and the nearest unit with one available was Chelsea. The night they moved Lennon I was still recovering from a caesarean section and preeclampsia, the midwives wouldn’t let me travel with Lennon and refused to discharge me. I stood by Lennon’s incubator for hours whilst the specialist transport team prepared to take Lennon on the 1 hour journey. It took them over 8 hours to stabilise him for the journey. At one point they debated whether or not it was safe enough to transfer him at all, and questioned the likelihood of him surviving the journey to Chelsea.

I lay in my hospital bed that night, on a maternity ward full of crying babies and wept. Tears upon tears for the baby I wished were in my arms, the baby I may never see alive again.

Late the next evening I discharged myself, still suffering the effects of the preeclampsia, but desperate to see my baby. I was an emotional mess. Walking out of the hospital with an empty womb and empty arms was the hardest experience of my life up until that point. We found a late night chemist, I needed a breast pump.

It wasn’t supposed to be like this – We were supposed to be walking out of the hospital with our baby, heading home full of happiness and excitement, ready to begin our journey into parenthood.

Ian’s father had travelled to Chelsea and Westminster hospital that afternoon. He waited hours for the nurses to get Lennon stable enough for a visitor. The staff informed Lennon’s grandfather that Lennon was extremely unwell and that they were deeply concerned about his critical condition. He couldn’t get much sicker.

The following day we made it to Chelsea and the plan was for Ian and I to stay there for a few nights, or at least until Lennon’s condition improved. My tiny baby boy looked so poorly. He was covered in wires, tubes, probes and monitors. He looked bigger than the other babies – At his birth weight – 2lb 9oz, Lennon was more than double the weight of most of the other babies on the unit, but was by far the sickest at that point. He needed so much support to stay alive. I now know the reasons behind the high level of support and why he needed all the IV infusions and treatments.

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5 day old Lennon at Chelsea and Westminster NICU.

TPN because he couldn’t tolerate any feed into his stomach.

Medicines to bring up his dangerously low blood pressure and blood sugars.

Anti-biotics to rid the sepsis that was taking over his small body.

An oscillating ventilator for his paper thin lungs that couldn’t cope with the ‘normal’ breathing pattern of a conventional ventilator.

Medicine to try to close a large hole in his heart.

Needles into his bladder to attempt to find the reason for his kidney failure.

A light for his Jaundice (a bit like a sunbed – He even had a super cute eye mask!).

A lumbar puncture to check for meningitis

Daily blood transfusions.

The list goes on…..

I was scared. My baby looked so fragile and vulnerable. I wanted to be close to him but he hated being touched, every time anyone put a hand into the incubator he would drop his oxygen saturations and his blood pressure – it felt like he was communicating to us that he just wanted to be left alone. That he was scared we would break him.

I spent endless hours sitting by Lennon’s incubator, listening to the radio that was kept by his bedside, reading his charts and questioning everything that was recorded. Through the clear Perspex wall of the incubator I willed him to stay alive – begged him to stay alive and let me have a chance to be his mummy.

It was December and the run up to Christmas, joy and happiness were everywhere. Lights, decorations, gifts, people on the streets smiling and laughing, the underground full of tipsy workers traveling home from their Christmas celebrations. I wanted the whole world to stop – just like mine had. My sad face and heavy heart didn’t fit in. I didn’t want to be in this limbo. One evening after leaving the hospital I contemplated walking out on the Fulham Road into the path of an oncoming bus. I felt out of control and so low.

Days turned in to weeks and Lennon began to improve very, very slowly.  This was the rollercoaster we had been told to expect – Two steps forward, one step back. It was 3 weeks before we held Lennon for the first time – Christmas Eve.

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Christmas Eve 2006. The first time we held Lennon – he was 3 weeks old.
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First ever cuddles with Daddy x

It was all I wanted for Christmas for that year, to be able to hold my baby in my arms. It wasn’t an easy task for the nurses; Lennon was still unstable and attached to so many machines and IV pumps. But they managed it and my much wanted and needed Christmas wish was granted.

6 weeks after Lennon first arrived at Chelsea and Westminster he was taken off the ventilator and was now dependant on CPAP to aid his own breathing. He still needed a fair amount of IV support, but seemed to be tolerating small feeds into a Nasal Gastric (NG) tube. And so we were transferred back to Lister Hospitals NICU in Stevenage, much closer to home.  We were over the moon – One step closer to home! Shorter journeys to the hospital also meant I could spend much more time with Lennon, and the visiting hours at Lister were much less strict than they were at Chelsea.

Lennon spent the following 6 weeks dependant on CPAP.  We were able to hold him most days, he had his first bath, and despite Lennon still being in an incubator because he was unable to support his own temperature, we were encouraged to get him dressed every day.

By the time Lennon had reached his due date – 27th February 2007, he was in the Special Care room and only needed nasal cannula oxygen to help with his breathing. He was prescribed an array of medication, and although he still needed his NG tube he taking a small amount of feed orally. He occasionally would stop breathing and needed to be resuscitated. It was scary, but it was nothing we hadn’t gotten used to seeing over the last couple of months. Things were looking up and home had been discussed a few times. Both Ian and I were understandably delighted by the slightest mention of bringing Lennon home, although at the same time nervous about caring for an oxygen dependant baby needing tube feeds. And the thought of him stopping breathing at home petrified me, but I really wanted my baby at home, where he belonged.

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Lennon on his due date.

Unfortunately this wasn’t to be. Lennon had other ideas – his breathing deteriorated quite rapidly over the course of a few days, until he needed to be intubated and ventilated again. That day will stay with me forever. I relive that day many times in my head, repaying the scenario minute by minute.

The Doctor reviewing Lennon and transferring him back into the NICU room.

The look on all the nurses’ faces and the tears in their eyes.

The mum that took me out of the room to call Ian and tell him to get there as quickly as he could.

Being led to the ‘bad news’ room and sitting in silence, alone, waiting for someone to tell me my baby hadn’t made it this time.

Ian arriving, crying on my shoulder.

Being led back to Lennon and asking if the nurse if he was going die and her replying that she couldn’t answer me.

Drinking copious amounts of sugary tea…..

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A very puffy Lennon back on the ventilator. Just over a month past his due date.

No one could find a reason why Lennon had suddenly become ventilator dependant again. All sorts of doctors visited to NICU to review him. They suspected Lennon had chronic renal failure and an endocrine issue but nothing that would hinder his ability to breathe unaided. They even called in an adult cardiac doctor who carried out extensive test – they all came back normal. I was devastated. We had tumbled so far backwards. I returned to sitting helpless at Lennon’s bed side. I read him stories and learnt to crochet to help pass the time.

Winter turned to spring and we were still in NICU at Lister holding a bedside vigil, whilst waiting for a bed to become available on the Intensive Care unit at Great Ormond St Hospital (GOS). It was decided they were only people who could get to the bottom of why Lennon could not be parted from a ventilator. It took 5 weeks for that day to arrive. I’ll never forget the transport team turning up, and not quiet believing that the day had finally arrived.

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In the transport incubator ready for his transfer to Great Ormond St NICU.

Lennon looked so big inside the transport incubator.

As soon as Lennon had arrived at GOS they began their extensive tests. It didn’t take long for them to diagnose Lennon with Chronic Renal failure – he had 1 cystic kidney and a small ball of cysts where the other should have sat. They also diagnosed him with pan hypopituitarism – his little body was not producing thyroxine, or growth hormone and they suspected that his adrenal glands were also dysfunctional. The most significant finding was in Lennon’s heart – His PDA (the shunt that snaps closed when a baby is born) was gapping open. The cardiac surgeon had said it was one of the biggest he had ever seen.

Once Lennon had undergone cardiac surgery he was taken off the ventilator. And after a 2 week stay at GOS Lennon was discharged back to Lister and into a cot for the first time! I couldn’t have been happier – my little soldier had cheated death yet again and maybe this time we were coming to the end of our Special care journey.

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Post cardiac surgery and off the ventilator.

We prepared for Lennon to come home with us.

For us to finally be his Mummy and Daddy.

For us to be able look after him and make all the decisions.

We had resuscitation training and our house was fitted with home oxygen. We collected a prescription of special milk and a ton of medication.  We borrowed saturation and apnea monitors, blood pressure and suction machines from the hospital. Our small flat was over taken with medical supplies. I was scared, but above all so very excited to bring our son home for the first time. At various points over the 6 months I doubted this day would ever come. I always thought Lennon was not destined to come home, go to school, or grow up. I could never picture at home – no matter how hard I tried.

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The first time Lennon went outside without being in a incubator. The first time he had been outside and felt fresh air on his face. He was almost 6 months old.

We were allowed to take Lennon off the ward for small amounts of time to get used to looking after him without the support of the amazing nurses that we had come to rely on over the last 6 months. We spent a night in a bedroom on the ward the night before we brought Lennon home.

Neither of us slept.

I spent the whole night either holding Lennon or staring at him. Disbelieving the day had finally arrived.

On 24th May 2007, after 6 months, we walked out of the Special Baby Care unit. I carried Lennon in his car seat, with an oxygen cylinder on my back. Down the very corridor I had spent the last few months walking up down, watching mothers leaving the delivery suite holding their babies. Those mothers haunted me – all I wanted was to walk out of the hospital holding my baby. Finally it was my turn.

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Lennon on his way home!

Our Special Care community nurse followed us home. She stayed with us until we had settled in and felt confident enough for her to leave.

I was ecstatic!

Poor Lennon was moved about like a doll. I placed him in his Moses basket, into the swing we had brought him months earlier. I cuddled him, stared at him – Almost trying to make up for the last 6 months. I still could not believe that my precious baby boy had survived and was finally well enough to come home with us.

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In his moses basket.

That night before we went to bed, I gave Lennon his medications before his last feed of the day.

He went blue and floppy in my arms.

I called for Ian, Lennon had stopped breathing.

He still had a pulse.

I laid him onto our bedroom floor and started CPR whilst Ian rang an ambulance.

My adrenaline kicked in and I knew what I had to do – I didn’t even have to think about it. By the time the ambulance had arrived Lennon was breathing again. I had saved his life. Thank goodness for the CPR training I had done before leaving hospital.

I felt numb.

Lennon ended up back in hospital that night, and a new journey began. 6 months in Special Care for not even 24 hours at home.

So much happened over those 6 months, and I learnt so much. I learnt that things aren’t always as they seem. I learnt the meaning behind the saying ‘The best laid plans of mice and men often go awry’ – no matter how much we or anyone else planned, the potential for something to go against that plan was always there. Lennon often wrote his own rule book!

The biggest lesson I learnt from being in NICU was patience – I never had any before Lennon was born. I struggled to wait for anything.

Patience was the main ingredient I needed to help me get through the 10 years that followed.

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Lennon and Mummy x

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Memories – The day I became a Mum

Lennon wasn’t planned – none of our three children were. They are all ‘happy accidents’

My children, Lennon, Isla and Florence ❤️

In June 2007 Ian and I had been seeing each other for 15 months. We weren’t living together and we both ‘loved life’. I had a successful career as a pattern cutter and grader, Ian worked in sales and we both enjoyed going out with our friends. We were very much young and free!

Ian and I before children

On the evening of Friday 23rd, Ian and I went out for dinner to one of our favourite restaurants and we briefly discussed my period being late. I was on the pill so we weren’t worried, but decided to buy a test ‘just to be safe’.

We went back to Ian’s parents house, and whilst watching Togo Vs France in the Football World Cup, I took the test.

Positive.

I took the second test in the packet.

Positive.

How?! Why now?! Oh . My . God.

My whole body flooded with emotions – excitement, panic, worry, happiness, and everything else in between. All flying around and colliding inside me like the tickets in the Dome on ‘The Crystal Maze’. I couldn’t think straight, but I instantly knew I wanted the precious gift that I had been blessed with, so very much.

If I’m honest, from early on I had a niggle something wasn’t quite right. It sat there in the depths of my head. Every time the thought pushed its way to the forefront of my mind, I buried it back down again. I put it down to being a first time mum and the worry of how we would both cope with the responsibility of a baby.

Fast forward to November, and Ian and I had brought a flat and moved in together. I loved being pregnant but I wasn’t well. I was puffy and swollen, and my blood pressure was through the roof. I felt awful. I was diagnosed with Pre-eclampsia and was admitted to hospital for observation. I was 27 weeks pregnant.

On the morning of Tuesday 5th December I woke up famished – I had been fasting overnight for a glucose test.

I was put on a CTG monitor (all patients on the ward were routinely monitored morning and evening) and my baby’s baseline heart rate kept randomly dropping. The midwives were concerned and consequently I was booked in for an ultrasound to measure my baby. Ian had left work, as advised by the hospital, and we sat together in a large room on the delivery suite listening to women in labour (Ian was horrified!) whilst the midwives and doctors frequently appeared to check my observations and the CTG reading.

At around 6pm, the consultant on call, Mr Atalla (who also made the decision for an emergency caesarean when I was pregnant with Florence) walked in, launched a pair of scrubs in Ian’s direction and shouted “we’re going”.

After that, everything moved swiftly. I was taken into theatre and the anaesthetist struggled to get a spinal block in my back because I was so swollen.

I don’t remember seeing or feeling anyone panicking – not like the obvious panic and strain on the many faces in the operating theatre the day before Lennon died.

I won’t lie – I was worried. I was 28 weeks pregnant – my baby boy would be born 12 weeks early and probably weigh about the same as 2 bags of sugars.

Would he be ok?

Would he be strong enough to survive?

I wasn’t ready for this – he didn’t have any clothes.

This wasn’t in my birth plan! (It was the only birth plan I ever wrote)

At 18.52 on the 5th December 2006 my beautiful, teeny baby boy entered the world weighing 2 pounds and 9 ounces. And in the split second that he was lifted from my womb, our lives were changed forever.

My son, who had no name at this point, was given straight to the special baby care team that were awaiting his arrival. They stabilised him, wrapped him in a white towel and carried him over to meet and I.

I was instantly overwhelmed with love and I will treasure that short, sweet moment until the day I die. His little face was so unblemished and pristine – My perfect baby.

Deliriously, I declared very loudly that he looked like a little bean! And then he was whisked away.

Lennon’s first night

After surgery I was kept in recovery overnight for my pre-eclampsia to be monitored.


Ian was taken to the Special Care Baby Unit to see Lennon, and the nurses handed him a photo for me. I still have that photo.

The nurses informed Ian that the special care journey was a rollercoaster – plenty of highs and lows – and that once our tiny, precious baby boy weighed 4 pounds and was feeding, we would be able to take him home. They anticipated it would take around 12 weeks, and I can remember making a million wishes on that night alone, that he would be home on his due date – 27th February 2007.

Lennon’s due date – he was still in NICU and we still had another big dip on the rollercoaster to go, before he came home.

I was taken up to the Special Baby Care Unit much later that night and my bed placed outside of the room where Lennon was inside his perspex box. His new home. I so desperately wanted to touch him but I could barely see him. I was unable to move and my bed would not fit in the room. My tears fell silently as I thought of him spending his first night on earth without me. All my dreams of the hours of motherhood vanished in an instant.

And that’s where Lennon’s short life began. On that day never did I imagine that ‘rollercoaster’ ride would have quite as many ups and downs, twists and turns and tears and enjoyment as it did. I never thought it would be quite as unpredictable, frightening and exciting as it was and I certainly never thought my tiny baby boy would change the lives of everyone who spent time with him – including myself.

The day Lennon finally left Special Care – 24th May 2007. He was home for 5 days before being readmitted and put back on full life support.

 

Lennon’s last day on earth – Goodbye

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Our wedding day

Saturday September 16th 2017.

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Ian’s proposal, In Give Kids the World, Florida 2015.

Today should of been our wedding day. Lennon was going to walk me down the aisle.

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In Torquay – before Children.

Instead, we went to the Crematorium to collect Lennon’s ashes. It was hard – knowing that he should of been holding my hand, walking down the aisle beside me this afternoon. Instead I was carrying him out of the Crematorium to the car, in a bag. He feels so light.

I sat in the car with his ‘scatter tube’ on my lap and sobbed.

The warm tears running down my cheeks feel so familiar now. In a way that I can not explain, I feel happier when I am sad – I am happiest when I am thinking of Lennon, but sadness always appears when Lennon is in my head.

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Harwood Park Crematorium.

It feels strangely comforting having his remains with us. Another feeling that I can not explain. I miss him dreadfully, and I want to hold onto every tiny little piece of his being and his life. Almost like trying to prove he was here, that the last 10 years did happen – they weren’t just a dream.

We wanted to mark today in some way, just Ian and I. We have been researching things to do all week and drawn a blank every time. Maybe because we know what should of been happening today or maybe because we haven’t yet remembered how to enjoy life without Lennon?

In the end my parents kindly took the girls for a sleepover and we jumped on a train to London.

On our many trips and stays in Great Ormond St Hospital over the last 10 years we always took Lennon for long walks around the West End and the City. Lennon loved being outside, especially in London. He enjoyed the hustle and bustle of the crowds.

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Lennon enjoying the water fountain at Leicester Square.

We made our way to Covent Garden, had lunch and booked theatre tickets to see School of Rock – appropriate in that Lennon adored Jack Black (At one point we actually believed that Lennon thought Jack Black was Ian, when he watched him in his beloved children’s show Yo Gabba Gabba).

We then walked down to The Southbank – a walk we had taken with Lennon on many occasions.

I’m so used to pushing Lennon’s wheelchair everywhere that walking makes my hands feel so very empty. I feel awkward when I walk, my arms hang by my sides heavily. My hands weighed down by my grief.

We rode on the flying swings and booked to travel on The London Eye.

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The flying swings on the Southbank, London.

At 4pm when we should of been getting married, we were up in the sky above London. As I took in the London skyline, I thought of Lennon and how much he would of enjoyed siting in a clear pod, high above the water. I closed my eyes tight and imagined him there beside me, his beaming smile, mouth wide open and his skinny arms flapping rapidly.

I loved the way he always seemed to experience the world so differently, he appeared to see things we didn’t.

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The view from The London Eye towards East London.

We went for drinks on the Southbank, in an enclosed area (which Ian likened to being ‘In the Night Garden’, another of Lennon’s favourite television shows). We spoke about Lennon, his life, and his death. We relived the happy times and the sad times, sharing our laughter and tears.

Ian is the only person in the whole world who knows how I truly feel. He is the only person who has seen what I’ve seen, and experienced what I’ve experienced. We have shared extreme highs and dark lows. I feel closer to him now than I ever have, and I know that I could not of survived the last 6 weeks – no, the last 11 years, without him.

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At the British Grand Prix. One of my favourite days with Lennon.

School of Rock was fantastic. Dewey Finn played by Gary Trainor was perfect for the part – I almost believed he was Jack Black at points in the performance. He portrayed even the slightest traits of Jack’s quirky personality.

And the kids were incredible, so young yet so talented. Happiness beaming from their innocent faces. I wondered if I would ever again genuinely feel as happy as they looked …..

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School of Rock – West End Show.

We walked back to Holborn through the quiet, dimly lit back streets. My hands still empty and heavy, but the shattered pieces of my heart full of love for the man who has held me up and kept me ambulate over the last 6 weeks. The man whom I should of married today. But Lennon clearly had other ideas!

What we have experienced hand in hand, side by side, is so much more meaningful and deeper than saying ‘I do’.

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Lennon, Mummy and Daddy x

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