I would give anything

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Miss this smile.

I would give anything to see this little face again.

Hold his little hands.

Hear his crazy quacking noise.

Feel his baby soft skin.

Ruffle my hand through his hair to the little coarse patch on his crown.

Have him head butt my legs.

Smile at his excitement as he watches Yo Gabba Gabba.

Get soaked whilst washing him in the bath.

Feel his little hand pat me on the back.

Listen to him belly laugh with pure enjoyment.

Squeeze his squashed nose.

Glance in the rear view mirror and see his arms flapping.

Tickle him under his chin.

Lift him into bed and kiss him goodnight.

Snuggle up behind him whilst he sleeps.

Give him one last, tight hug and tell him ‘I will love you forever’.

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Lennon and Mummy x

Previous blog post – The day I became a mum

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

Previous blog post – Our Wedding Day

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

Previous blog post – Back to school, back to reality

Back to school, back to reality

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Back to School 2016 – Lennon year 5, Isla year 4, Florence morning preschool.

Little did I know this would be the last back to school photo of all my children together.

I had been dreading this week.

I wanted to be excited for my girls – Isla started middle school and Florence had her first day at school. But instead, I was overcome with sadness.

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Back to school 2017. Isla year 5 starting at middle school, Florence starting in reception.

Lennon would of gone back to school on the same day as the girls (Tuesday) in year 6, still in his PMLD class.

He loved school. I always looked forward to putting his uniform on him for the first day back – his excitement when he realised he was going back to school after 6 weeks away was incredible!

He always looked his best after the summer holidays – the only time his skin slightly coloured, and his hair sun kissed blonde.

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Back to School 2012 – Isla reception, Lennon year 1.

I miss that hair.

I fought with myself all day. Sobbing for what I have lost, what I should have, what I want. Heartbroken for the missing face that should of been smiling back at me through the camera lens. But at the same time feeling proud of my girls. That they had gotten through the awfulness of the last month, and were both excited to start at new schools. I tried to push the sadness to the back on my mind and concentrate on feeling happy – but no matter how hard I tried, the tears wouldn’t stop.

I imagined how sad it would be at school without him. The empty space in his class where he sat. His peg bare, and the silence left without him quacking and clicking.

The reality of life moving on hit me.

Lennon’s car was towed away on Thursday. We obviously knew this would happen, but we were rushed into the whole process as the DVLA had removed the vehicle tax after being informed of Lennon’s death.

We had to quickly purchase a new car.

I couldn’t drive Lennon’s car, but I still sat in it. Remembering when it first arrived (it was our first wheelchair accessible vehicle) and Lennon’s beaming face sitting in the back, waving at everyone. We nicknamed him ‘The Pope’ when we took him out in it! I couldn’t bring myself to empty out all his emergency medical equipment from the various cubby holes. And I didn’t think I’d be that upset about it going until it was on the back of the pick up truck, and I spotted the little stick family stuck on the back window.

Our family. Our family of five.

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Our mobility car being taken away.

Letters carry on arriving informing us of our benefits stopping, benefits that we had relied on. Invoices charging us for over payments, backdated to the exact date Lennon died. Invoices that I cannot pay, because I now have no money to pay them. All the money we had has been spent on a car so that I can get Isla to school.

I applied for job seekers allowance, wanting to buy myself a little extra time to grieve before returning to some form of work. Only to be told that because I hadn’t ‘worked’ in 10 years I was ineligible. Despite the fact that in those 10 years, I had worked harder and for many more hours than the average person. The fact that I had saved the government and the NHS hundreds of thousands of pounds by providing my son with hourly complex medical care counts for nothing.

It feels like another big kick in the gut – for 10 years you gave up your life, your career, to look after your beloved son. You saved the tax payer hundreds of thousands of pounds. You thought you were doing the right thing. You put everything you had into giving your child the most fulfilled life he could possibly have.

Your child dies. You are lost. Your whole life purpose has vanished. You want to disappear with it. You want life to stop whilst you try to comprehend what has happened to you.

You are told to man up – move on. Get a job. Pay the bills. Provide for your remaining family. Leaving the last 10 years a memory.

So this weekend I have the task of putting my CV together, and trying to find a job.

The one thing I have decided on, is that I won’t be going back to the career I had before Lennon. It’s not me anymore.

I want to make a difference. I want to be one of those people that made a difference to Lennon’s life.

I have enjoyed the work I have been doing to try to Save Nascot Lawn from being closed, and ideally I would like a job doing similar. Unfortunately the only qualifications I have in this are my life experiences.

I don’t want to forget the last 10 years and become a different person – I want to remain who I am, Lennon’s Mummy. And to use all my experiences, everything I have learnt and done over Lennon’s life to shape the person who I become in future.

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Lennon and Mummy x

Previous blog post – Moving on

Clinging on

The morning after Lennon’s funeral we flew to Majorca for a week. Over the years we had always said that we would take the girls abroad soon after Lennon died. Mainly to give them a holiday they had never been able to experience before, but also to inject a little happiness back into their lives.

In that respect it worked. Both Isla and Florence had a fantastic time. (Despite isla being poorly for a couple of days.) We only left the hotel once, and they spent most of the week in the swimming pool.

Even Ian seemed to enjoy himself, swimming in the sea and getting involved with the hotel entertainment.

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Isla enjoying the view across the ocean.

I really thought it would be a good idea to go away for me too. I honestly thought that I would feel a little better.

Who doesn’t feel happier in a sunnier, warmer environment, lying by a pool all day?!

Me.

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Florence, my little water baby.

I can honestly say I didn’t feel any different being away from home, other then feeling further away from Lennon.

I still began and ended everyday in floods of tears, and spent the days hiding behind my sunglasses or a book trying the blink the tears out of my glassy eyes.

The pain and the emptiness still there, and the gapping hole in me still wide open and raw.

Forcing smiles and happiness for my daughters, so that they can’t see the pain I am in and the constant discomfort I feel.

Trying to enjoy myself (as I am told “you’ll feel so much better”). But those true feelings of enjoyment and happiness have abandoned me. Deep sorrow, emptiness and loneliness have taken their place.

It was a relief to walk back through our front door, and into our home. Lennon’s home.

Everything in Lennon’s bedroom is still as it was when he left that Tuesday night. His feed pump still has his clear fluids attached. His syringes and medications are all still on his unit and his fluid charts and emergency plans all still hang on the wall. His clothes in his drawers and his toys and books still in his bed.

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Lennon getting up in the morning.

I feel close to Lennon here at home and at this moment in time, it’s the only tiny bit of comfort that I can find and cling on to.

Previous blog post – Farewell my little soldier