15 Months

Grief hasn’t been my friend over the last few weeks and it’s plastered all over my face for the world to see. I feel tired all the time, I could fall asleep anywhere at anytime and some days I can feel myself drowning in sadness. The bags under my eyes show the heavy weight of grief I am carrying inside me. I’m forgetting things – Isla’s extra tap lessons in preparation for her upcoming exam, Florence’s after school singing group, payments for school discos and Rainbow/Guides Pantomime trip.

Some days feel so long, almost never ending. And some days whizz by in a flash.

I try to keep myself busy – I find that being out of the house and around other people helps, but it doesn’t ‘fix’ anything.

Nothing can be fixed now and I have come to terms with that, but I need to attempt to paper over the cracks. My Lennon shaped hole will never be filled, not even slightly, however, that the outside of that gapping black hole can be made more colourful and prettier. And only I can do that…..

Last week I came to the realisation that what I am feeling is depression. I know this because I have suffered with depression since Lennon was born. Not severely, but enough to need a low dose of medication to keep my sadness suppressed.

Lennon and I during a long stay on Badger Ward, GOSH.

I arranged to meet our hospice nurse and one of our continuing care nurses for coffee last week and I found talking with them about Lennon and sharing memories helped to alleviate some of the sadness. I could talk about Lennon all day everyday and I find great comfort in doing so. But there aren’t many people who still talk about Lennon. Maybe they think bringing him into the conversation will remind me of what I’ve lost and make me sad. It can’t – there are no reminders, he is forever on my mind and in my heart. Every second of every day.

We speak about Lennon everyday at home and he is still very much a part of our lives. Our house is full of reminders and happy memories. Florence often sits in his wheelchair at the table to eat dinner and Isla squeezes her size 3’s into his tiny bright Yo Gabba Gabba socks – I love hanging them on the washing line! And as Autumn changes to Winter Ian often reminisces about his long walks around the village with Lennon in the cold wind.

Lennon loved the wind.

Bike ride to watch the baby ducks on the pond in the village.

Florence often asked where Lennon is – A question I still cannot answer as I do not know. I tell her he is sliding down rainbows somewhere, always watching and guiding us. How can I explain life after death to a 5 year old when I don’t understand it myself…..?

Florence loved to steal Lennon’s books!
Isla helping Lennon to draw.

Lennon’s beloved respite centre Nascot Lawn is due to shut its doors next week and therefor the campaign to save it has now ended. Another chapter of Lennon’s life closed forever.

Now I’m focusing on building a legacy for Lennon. I assisted in compiling the Together for Short Lives report – End of Life Care: Strengthening Choice and I recently spoke at the Hertfordshire Rapid Response Conference, both of which I thoroughly enjoyed. I’m due to share my story with student Children’s nurse next month at Hertfordshire University and I’m looking at other ways in which I can share the up and downs of Lennon’s life in order to make a difference to children, families and professional practice. The only way in which people can be educated on life with a complex child is from parents and children who have lived experience. I want to share Lennon with the world! Plus It’s good therapy for my mental health.

Telling my story at the Hertfordshire Rapid Response Conference, October 2018.

It’s a way for me to keep a part Lennon alive – his story will never die.

Lennon and Mummy x

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

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.

Forever 10 years old

Dear Lennon,

Today is your 11th Birthday – The first time we will celebrate your Birthday without you.

I haven’t ordered the balloons that you loved, or the fabulous Yo Gabba Gabba cakes that you could never even taste.

I haven’t been out to the shops and collected a plethora of catalogues for you to flick your way through.

I haven’t got your big birthday badge and the lights we decorated your wheelchair with.

Lennon spent his 9th birthday at Universal Studios in Florida!

We celebrated each one of your Birthdays as if they would be your last. Just incase.

I’m so glad we did.

You never really understood Birthdays – but year after year, as you grew older, I think you got used to knowing it was ‘your’ day. A day that was specially made for you.

Lennon’s Day.

We kept the day the same every year, in hope that the routine would let you know it was your Birthday.

We would send you off to school on the bus – with your huge birthday badge, lights and balloons. Just to ensure that everyone at school made a big fuss of you!

Lennon’s 7th Birthday.

You would wear the fabulous birthday cake hat at school and your friends would sing you a ‘Happy Birthday’ in assembly.

You loved assembly’s, and you most certainly loved being fussed over.

We would collect you from school. I’m sure at this point you would know what was happening next – We would take you to Van Hages and Ice skate for your birthday treat.

You loved Ice Skating. I can picture your face whilst sliding across the ice in your wheelchair, your wide eyes, big beaming smile and flapping arms.

Ice Skating on Lennon’s 10th Birthday.
Ice Skating on Lennon’s 6th Birthday.

One year Daddy fell whilst pushing you and your wheelchair flipped backwards onto the ice. My heart skipped a beat, worried you were hurt. We picked your chair up and all the while you were laughing so hard you could barely catch your breath – You wanted to do it all over again!

Always the thrill seeker.

We would walk around Van Hages admiring the decadent Christmas decorations and lights. Every year you and your sisters would each chose a decoration for our tree.

We would go home, light your birthday candles and sing you Happy Birthday. You were never able to blow out your candles yourself, but you always displayed great delight in watching your sisters blow them out for you.

Once you were in bed, Daddy and I would reminisce about the day you were born and wonder how on earth you survived.

Lennon’s 1st Birthday party.

With each year that passed, we grew prouder of your fight for survival and we felt so incredibly lucky to of celebrated yet another birthday with you.

I treasured your Birthdays like gold dust. Each one more precious than the last.

Lennon’s 9th Birthday in Florida – By far his most magical birthday!

Last year we went all out for your 10th Birthday.

10 whole years with you.

We considered you reaching 10 the most amazing achievement!

Singing Happy Birthday.

We threw you a massive party – a UV disco. You loved ultra violet lights! So many people came to celebrate with you.

My only regret was that you were poorly. Your colon had failed by that point and you were in so much pain. I wish so much for you to of enjoyed your very last Birthday with us.

Before the big ’10’ party.

Today, I will make you a birthday cake and your sisters will blow out your candles.

Today, I will blow up your balloons, we will write you messages and send them to the sky for you.

Tonight, we will go Ice Skating for you, like we always did on your Birthday.

When Daddy falls over we know you will be laughing with us.

Today, like every other day since you died, I will think of you and wonder where you are. Wonder whether or not you are happy and pain free now. Able to celebrate your special day.

Lennon’s day.

Mummy and Lennon on his 10th Birthday x

Farewell, my little soldier

On Tuesday 22nd August 2017 Ian and I took Lennon on his last journey and said our final farewells to our cheeky, thrill seeking, courageous little soldier ❤️

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Just after an interview with Paul Ross from BBC Radio 4.

I thought my heart couldn’t break any further, but when the hearse arrived at Keech and the funeral attendants placed his small, white coffin in the back, alongside a beautiful red rose ‘Lennon’ the pieces of my heart shattered again. My whole body felt so heavy. I honestly did not think I would be able to make it through the day. It was most definitely the second hardest day of my life.

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Lennon resting in the Meadow Suite at Keech Hospice.

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hadn’t really seen many people or been out much since Lennon died and having to face all those people and paint on a face was so tough, when all I really wanted to do was go home, get into my bed and sob.

I really, really hope that we both did our only son proud. Ian was amazing (he wrote and read out a eulogy of Lennon’s short, but hectic, fulfilled life) and I’m super proud of him. And despite Isla being heartbroken and not wanting to go into the Crematorium, both my girls were equally amazing to get through the service 💗

We played the song that Lennon loved from his favourite TV show ‘Yo Gabba Gabba’ – Rainbow Connection by Paul Williams.

Florence was her typical self and sung all the words at the top of her voice.

I hadn’t noticed how many people had come to say their goodbyes to our little soldier. The funeral director felt their was roughly 250 people there – Truly amazing considering Lennon was just 10 years old and had never spoken a word to anyone in his life!

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Isla and Florence’s big balloon for the balloon send off.
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Memory board made by Lennon’s Aunty, Uncle and Cousins.

Three lakes, Westmill Farm, ended up being the perfect venue, and the balloon release was simply stunning. The view from the top of the hill, over the lakes is breathtaking. And it was a beautiful moment to see all those balloons flying up to Lennon – including Isla and Florence’s special BIG red balloon which I think broke through the clouds!

Ian now wants to us to get married at Three Lakes, after we cancelled our wedding that was due to take place on September 16th.

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Lennon’s balloon release.

We also set up a Memorial page for Lennon, so that people can share photos, stories and memories of Lennon.

I don’t feel any different now Lennon’s funeral is over. In fact, if I think about it, I actually feel worse. It is final now. The missing piece in my puzzle is gone forever, I will never find a piece even remotely similar to fill that big empty void, and these last few weeks are not a horrific dream that I will one day wake up from.

My little sidekick is gone forever.

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Lennon and Mummy x

Life moves on – it has to, that is what life does.

But I cannot see how my life can possibly carry on. My head is fuzzy and my eyes permanently full of tears and I can not begin to imagine life without Lennon.

The thought of going back to work scares me, but I know that I will have to – to do what, who knows.

For now it’s one day at a time. I won’t think about tomorrow or next week, because mentally I can’t.

Previous blog post – Our final gift