In a Different Life

When I was pregnant with my first child, I imagined all the experiences I would have with my son. As I’m sure all expectant mothers do. Not just the first few weeks and months, but also the years ahead.

Breastfeeding, cuddles, learning to walk and ride a bike.

Trips to the park, standing on the sidelines watching him play football or rugby, and waving him off for his first day at Secondary School.

Little did I know that my life with a first born child would be so different.

Different.

Not worse, in fact sometimes better – And certainly much more interesting and fulfilling in ways only a Special Needs Parent could possibly imagine.

Tube feeding, cuddles with wires everywhere frightened you would knock something that was keeping your baby alive. Bringing your baby home for first time, aged 6 months.

Lennon’s first day at school.

Learning to walk in a frame aged 5, fundraising for an adapted wheelchair bike.

Spending endless days, weeks, months inside a tiny hospital room.

Today, in the life I imagined myself leading this time 12 years ago, Lennon would of started Secondary School. I would be straightening a wonky tie, taming messy hair, shining a pair of smart black shoes and watching an 11 year old out of the front door.

That day was never meant be.

Instead, I would of been administering a ton of medications, changing dressing, emptying stoma bags and packing medical equipment and supplies ready for the day ahead. I would of smothered my gorgeous boy with kisses and cuddles before pushing him out of the front door in his wheelchair and onto the school bus.

Trying to get a photo of them all together always took many attempts….
Finally!

But I am not doing that either.

Instead I am waving off only 2 of my 3 children for their first day of the school year. Florence into year 1 and Isla into year 6.

If you told me I could have Lennon back, even for the shortest time, and I could choose between the Son I imagined all those years ago, or the Lennon we were given, I would never choose the life that I imagined and dreamt of.

I would always choose the Lennon I know and love and our extraordinary life.

Lennon having fun at school, his favourite place.

There will be many Special Needs Parents sending their children off to school this morning wishing that they were on their way to a mainstream secondary school.

I’m sat here wishing my son was alive and that I was standing at my door waving him off on the school bus to his severe learning disability school, watching his beaming smile and flapping arms as the bus turns the corner at the bottom of my road.

The last ‘First day of school’ photo of all of my children x

First Christmas

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.
Christmas Day 2016.

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?

Christmas 2009.
Visiting Santa at Nene Valley Railway, 2011.
Christmas Day 2014.

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.

Christmas 2016.

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.

Magic Kingdom, Florida, December 2015.

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 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