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.

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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