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

On Sunday I sat listening to BBC5Live Investigate with tears trickling down my cheeks. I felt the pain of Hayley and Charlotte describing their lives because I have walked a similar journey.

You cannot begin to imagine that journey if you have never walked in those shoes. Trust me. Since Lennon has died I now know what a ‘typical’ life is. What it is like to get through a day on 8 hours sleep, not have to make life or death decisions on no sleep, to not feel like you are solely responsible for keeping your child alive every second of every day.

Preparation for bath time.
Lennon’s medical cupboard.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Meeting Buzz and Woody at Hollywood Studios, Florida.

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

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

Lennon and Isla enjoying the gardens at Keech Hospice.

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

The Together for Short Lives inquiry found that 46% of Clinical Commissioning Groups aren’t implementing the Governments end of life care commitment   and have no plans to do so.

Our government must take urgent steps to ensure the support that children with life-limiting conditions need is delivered so that other parents can look back on their child’s final weeks and see happiness, not resentment.

Daddy’s favorite photo of his beloved Son x

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

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

But maybe grab some tissues first ….

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.