Month: December 2017

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.

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.

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.