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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. 

The responsibilities of living with a child who requires medical care 24/7 are immense and the weight you carry is beyond heavy. It’s unimaginable.

Lennon had always required a high level of care at home – so much so that neither Ian or could work. Our care package was always good (not brilliant) and generally we managed ok. We were lucky enough to receive 36 nights a year respite at Nascot Lawn – an NHS nurse led respite provision and that made all the difference to how we coped. We knew that we had one weekend every month when we could catch up on sleep, spend time with Isla and Florence and prepare ourselves for the month ahead. 

In the last few months of Lennon’s life everything changed. We spent a long period of time in hospital and when Lennon was discharged his needs increased to a point where we felt like we were drowning. Our care package was increased but that only touched the sides. 

We couldn’t cope and that broke my heart. All I wanted was to be able to care for my child and look after him myself, but I needed constant help to be able to do that. 

And then a bombshell was dropped onto us. We were told that Nascot Lawn was closing due to a decision made by Herts Valley CCG to withdraw funding to the service. 

We instantly knew that there was no way we would be able to cope without our weekend off every month, and that frightened me. My fight the Save Nascot began. 

I spent the last 6 weeks of Lennon’s life campaigning alongside other parents against this awful decision whilst still providing him with the 24/7 care he needed.

I resent that hugely. I look back and wish it hadn’t of been that way. I hate that I look back on last weeks of my beloved sons and remember the overwhelming fear that I had at that time. 

And that’s why the Together for Short Lives report End of Life Care: Strengthening Choice means so much to me. 

For families like mine, high quality children’s palliative care is essential. Without it, we just couldn’t have survived. We need the government to fulfil its commitment and help children and families make the most of every minute. 

When you have a life limited child you should not be fighting for help. You should be spending quality time with your children making memories – you never know how long you will have them for. 

Good palliative care and short breaks for life limited children should not be a postcode lottery, families should not have to rely solely on charities to enable them to survive and they should certainly not be begging for what they need. 

I could not fault the care Lennon received from our local Children’s Hospice Keech, especially after he died. They were always on the end of the phone and they looked after Lennon at short notice whenever we had a major crisis’. But they are under huge pressures – Keech need to raise over £6 million every year to enable them to care for their patients and families. 

We were one of the lucky ones. Most families like ours do not have out of hours support or access to regular short breaks. 

The Together for Short Lives inquiry found that 46% of Clinical Commissioning Groups aren’t implementing the Governments end of life care 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.

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 ….

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

Making ends meet

The Guardian published an article written about our financial struggles since Lennon died.

I won’t lie, it was very difficult to talk to a stranger about our financial situation. I talk about grief so easily, but talking about money doesn’t come easy to me.

However, Francis’ compassion and understanding made it easier and I think she has written a very powerful piece.

Both Ian and myself gave up our careers to care for Lennon in the hope of giving him the best life possible. And also because neither of us could put in the effort required to hold down a job whilst getting up every other throughout the night to tend to Lennon’s complex medical needs.

When Lennon died, all of our benefits stopped. Understandably so – we now did not qualify for any of them. The invoices for back dated payments to the exact date of Lennon’s death that arrived shortly afterwards were distressing to say the least. And the thought of returning to work was daunting when all I really wanted to do was hide myself away and grieve for my child.

Both Ian and I pulled on our grown up pants and returned to work. Not to the careers we previously had – too much time had passed. But to low paid jobs with the long term aim of building ourselves new careers.

Not only do we suffer the financial strain, but Isla and Florence have to cope with us working as much as we possibly can. This means that Ian and I are not there for them at a time when they need us the most. There brother has gone and not only are they having to adjust to a life without him, they are having to adjust to Ian and I not being there for them as much as they need us to be and missing out on things that they used to do, like meals out, dance and gymnastics classes.

Yes we lived in benefits, but we also saved the government hundreds of thousands of pounds by providing Lennon with round the clock medical care – If we had of put him into residential care and carried in with a ‘normal’ family life the cost to the state would of been in excess of £300,000 every year.

Would having pots full of money help our grief?

I don’t think anything will stop our grief – it’s here for life. But I do think having money would help bring less strain and a little happiness to our lives.

We want to be able to work and earn our own money like everyone else, but could we not of had a little time to grieve first?!

You can read the article here:

https://www.theguardian.com/commentisfree/2018/aug/30/struggling-families-no-deal-brexit-add-worries?CMP=twt_gu

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.

1 year on through Ian’s eyes

This time last year was the toughest point of my life, it had been a 10 year plus roller coaster ride with Lennon. Some massive highs and terrible lows. But as a family we had taken it on. We always knew that Lennon would not live into adulthood. When he was in PICU at 2 years old the doctors didn’t think he was going to survive. From that moment on me and Nik dedicated our lives to him and made every moment count. Without Nik’s ability and determination we would of never have made double figures.

Since Len’s death we have had to rebuild -both emotionally and financially. It hasn’t been easy. I knew when Len died, it would be my job to lift Nik and the girls. Hopefully I have, and I’m proud of what they have achieved in a tough year.

Life will never be the same, but we will continue to make the most of it just as Len would have wanted us to.

Reading over the messages we received this time last year meant a lot. So many people I didn’t even know were following our story.

My aim was for Len to never be forgotten and touch as many peoples life’s as possible.

I think we achieved that!!

#forever10

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.

—————

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.

8 months

“The pain you feel now will ease with time.”

So far, I have found this to be statement untrue. As yet the pain has not decreased at all, in fact it feels like it has increased. With each day that passes I miss Lennon more and more, and it hurts. The gapping hole in our lives feels like it is slowly growing.

I’ve gone from sleeping like a log to sleeping badly. I’ve never struggled to sleep before. I toss and turn in bed, trying to turn my complex thoughts into some form of sense.

Recently Lennon appears frequently in my dreams – sometimes he is alive, others he is dead. And despite waking up some nights sobbing, struggling to catch my breath, I do get great comfort from seeing him. I find myself feeling upset when I don’t dream about him.

Sleeping peacefully.

Every morning I get up to yet another day without Lennon.

There are days when I have to force myself out of bed. Grief is exhausting – it seems to steal my energy leaving my head foggy. If it wasn’t for my girls I don’t think I would make the effort to get up and dressed every day.

Florence has been struggling with her grief. Her behaviour has been awful for over a month now. Granted, she has never been an ‘easy’ child (anyone who’s spent time with her will know that!) but even school have noticed that she is talking about Lennon more so than usual.

She regularly asks where Lennon has gone and it’s so hard for us to explain. Lennon is dead, but I have no idea ‘where’ he is….

Florence and Lennon enjoying the swings.

My little girl needs bereavement support – support that I cannot give her.

Florence is a strong, stubborn child and doesn’t like to ‘talk’ or explain how she feels. She is a complex character and even I, as her mother, find her difficult to understand.

Isla however is the opposite. She is an outwardly sensitive child who wears her heart on her sleeve. She is much easier to read and will always approach someone when her feelings overwhelm her.

Isla and Lennon during one of Lennon’s long stays at Great Ormond Street. Even then she missed him when he wasn’t at home.

Isla has fantastic support at school, which is good as she doesn’t like to get upset in front of Ian and I. School is her safe place to grieve. She struggles in the holidays – there is no where for her to hide her grief from us and the Lennon shaped hole in our home is so much more apparent in the school holidays.

Isla misses her brother and is struggling to coming to terms with the fact that she will never see her big brother again.

Watching my children grieve for their brother is as painful as my own grief.

Enjoying Torquay together.

I have been having flashbacks. My mind wanders back to that day. I replay moments minute by minute. I remember the last time he was at home, in his bed. I see Ian carrying him out to the ambulance.

I find myself back in the Intensive care unit, signing the consent form for Lennon to go to theatre. Lying next to him in bed while the doctors turns of his life support.

I try my hardest to override those thoughts with happy memories – Lennon’s bright, beaming smile and his clicking noises.

Big smiles for Daddy! 
Lennon enjoying the freedom of his walking frame.

Life without Lennon is still so difficult to comprehend.

I cannot imagine life without grief and pain and I cannot imagine the pain getting easier with time.

Maybe it will, maybe it won’t.

Lennon, Mummy and Daddy x

One in a Million

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

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

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

Lennon in Intensive Care.

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

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

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

At Great Ormond Street hospital undergoing a round of testing.

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

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

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

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

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

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

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

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

But that was all.

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

Enjoying the FunFair.

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

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

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

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

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

Speeding around the rink at Rollercity.

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

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

Splashing in the paddling pool.

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

Lennon thoroughly enjoyed his bike.

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

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

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

One of Lennon’s favourite activities. 

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

Horse riding with school.

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

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

Our family of 5 x