December 2017 – Living with Lennon

First Christmas

Published on December 24, 2017August 6, 2018 by Nikki2 Comments

Christmas Eve 11 years ago – The first time I held my baby boy. He was 19 days old. In a hospital across the other side of London and we were still unsure if he would survive.

The pain I felt then was incredible.

All I wanted for Christmas was to hold my baby and to bring him home. For him to survive and experience a life outside of his Perspex box, monitors, tubes and needles.

Ian and I holding Lennon for the first time in NICU Chelsea and Westminster.

It is nothing compared to the pain I am feeling now. Facing my first Christmas without my first born child.

All I want for Christmas is Lennon. To see his face beaming at the sights of Christmas lights, feel

his hands slap me on the back as he watches his sisters getting excited for Santa and to watch him throwing spoons across the table while we eat Christmas dinner.

Enjoying the Christmas displays at Van Hages.

In the run up to Christmas, every year my thoughts are consumed by our time spent at Chelsea and Westminster. Sitting over Lennon’s Perspex box, the monitors flashing and singing. Walking up and down the Fulham Road in between the tube station and the hospital, day after day. Christmas lights and charming decorations everywhere.

The shops full of gifts, and passers by full of Christmas cheer. The gigantic Christmas tree in the hospital lobby.

And me.

Entering the hospital with promise for the day ahead. Thoughts that today would be the day my baby would turn this around.

Leaving the hospital in a cloud of dark and sadness, reliving the awful events of each day.

Ever since Lennon’s birthday I have had an urge to return to Chelsea and Westminster. To retake my steps and see Christmas on the Fulham road.

Why? Because I am looking for something. I don’t know what. Maybe memories. But why am I looking for sad memories and not happy ones?

Visiting Santa at Nene Valley Railway, 2011.

Maybe because I have been consumed by sadness since Lennon died. There are glimmers of happiness there, occasionally. I try to hold on tightly to them, but they slip through my fingers so very quickly.

If I could hide in bed for the next few days, believe me I would. But I won’t – my girls need me. Ian needs me. My girls deserve to have the most fantastic Christmas and to know that their brother will be looking down on them, expecting them to be enjoying every second of Christmas. For themselves, and for him.

He will be the sparkle in their eyes while they are opening presents, playing games and spreading joy.

I’ll look for that sparkle and hold on to it tightly.

Forever 10 years old

Published on December 5, 2017August 6, 2018 by Nikki4 Comments

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!

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.

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.

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!

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.

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.

December 3rd, 4 months.

Published on December 1, 2017August 6, 2018 by Nikki4 Comments

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.