December 3rd, 4 months.

On the 3rd of December it will be 4 months since Lennon died.

17 weeks since I last saw his ocean blue eyes wide open.

121 days since his little body grew too tired to carry on fighting.

My gorgeous boy.

I want to be able to tell you that the pain has lessened slightly, but it hasn’t.

It’s still there.

It smacks me in the chest when I awake every morning. It still hurts, but the pain is becoming familiar.

Some days I feel like I’m drowning in pain, my body feels heavy and my head foggy.

Some days I feel ok.

There are rare days when I feel good. Not happy, good – I can’t imagine feeling real, true happiness ever again.

Our home is quiet and bare.

No nurses or carers in and out at all times of the day.

No school bus.

No deliveries.

No mad drugs runs to various collection points.

And the phone barely rings anymore.

They came and took away Lennon’s bed. The magnitude of this was immense – not only is there now a gapping space in Lennon’s room where his bed stood, but there is also the cold fact that now Lennon has nowhere to sleep in our home. He is definitely not coming back.

Florence cried for days. She was always very aware of the fact Lennon could only sleep in his bed. Now his bed is gone, and that means he cant sleep here anymore – he is never coming home.

I gave away Lennon’s bike to another family – a little boy similar to Lennon. I hope him and his family experience as much joy from it as Lennon did.

His walking frame, medical ancillaries and special milk feed were shipped to a children’s home in Zimbabwe.

Escaping from respite! 

The sympathy cards came down.

I found the empty spaces in our home unbearable. I brought a coffee table for our living room to fill the gap where Lennon sat in his wheelchair to watch television.

Lennon’s clothes are still in his drawers, untouched. His drawers are still in his bedroom. It is still Lennon’s bedroom – It will always be his bedroom.

Ian and I went back to Great Ormond St to see Lennon’s surgeon, gastroenterologist and his complex care nurse. To say goodbye and to thank them for playing such a significant part in the 10 years of Lennon’s life.

But also to settle our minds – would the outcome of been different if Lennon had of been transferred to GOS instead of Addenbrookes? Would Lennon of had a better chance of surviving if he had of got to theatre any quicker? Would the outcome of been different if it was Lennon’s surgeon who performed that last chance surgery? – The surgeon who often joked he knew Lennon’s inside better than his outside.

The ‘what if’s’ in my head had gained momentum as the weeks passed – Lennon’s surgeon thwarted them in their tracks.

Lennon’s heart had stopped beating less than 12 hours after he became unwell – the sepsis had already taken over his little body.

Lennon’s surgeon had read the theatre notes from Addenbrookes – the surgeon had written that they were astounded Lennon was still alive considering the entanglement the saw in his small bowel. It was apparent that It didn’t matter who performed the surgery or when he got to theatre – Lennon’s small bowel was beyond saving.

Ian and I left in tears.

We walked around the City for hours. Talking, crying and remembering. I drank too much.

It was heartbreaking to go back and have to hear what we did. But I needed to hear it from the man who knew my little soldiers bowel better than anyone. The ‘what if’s’ have vacated my head.

As well as campaigning to save Lennon’s beloved respite centre, I have been doing small amounts of work here and there. I am enjoying it, and very slowly I’m beginning to find myself again. Build myself a new life. It’s hard – I loved my old life, I enjoyed being a part of the special club I was in. I loved caring for Lennon and I made it my purpose in life to make sure he best quality of life possible. Now I’ve been kicked out and pushed into a new club – The Bereaved Mum club – A club I didn’t chose or want, but I suddenly ended up in.

One thing I do know is that Lennon put me on a path. A very different path from where my life was heading. He took me on a journey, gave me an experience that not many people get from life. I need to carry on down that same path and use the knowledge and expertise that Lennon taught me to help change the system for other families.

December the 3rd – 4 months since Lennon died.

My birthday.

Mummy and Lennon 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

Our final gift

Lennon’s funeral is something we have spoken about since Lennon was a baby.

When we should of been taking our newborn baby home, and enjoying those first few days of being new parents, we were sitting staring at our tiny baby in his incubator covered in wires and tubes and wondering how long he would survive for.

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Christmas Eve – the first time we held Lennon.

Over the years our thoughts and ideas changed. Songs we thought we would use were replaced, the image in my mind of his coffin got bigger, the colour alternated and the outfit he would wear changed.

I always tried to push the thoughts of Lennon’s funeral to the back of my mind. I can’t do that anymore.

I can’t avoid those thoughts – I need to turn them into reality.

I can just about get out of bed in the mornings. Putting one foot in front of the other is zapping my energy. Ordering balloons and helium today took up everything I had left for the day and felt like a mammoth task.

I always hoped I would be strong enough to stand up and speak – I am not. But Ian is, and I know he will do both Lennon and I proud.

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Enjoying the sun in Coram Fields after an appointment at Great Ormond St Hospital.

I have one more task to fulfil for my little soldier, maybe the second biggest gift of all from me to him (giving birth to him being the biggest). I hope we can give him the send off he truly deserves. I want people to remember my tough, stubborn, smiling, cheeky, mischievous little boy and to share their favourite stories and memories of him.

And for everyone to be honoured and proud that they played a part in Lennon’s amazing journey through life.

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Ian, Lennon, Isla and Florence – Summer 2016. Our last family holiday.

Previous blog post – The days after