premmie – Page 2 – Living with Lennon

Back to school, back to reality

Published on September 9, 2017November 19, 2017 by Nikki4 Comments

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.

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.

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.

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.

Previous blog post – Moving on

Clinging on

Published on September 3, 2017November 19, 2017 by Nikki5 Comments

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.

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.

img_1547-1 — 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.

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

Farewell, my little soldier

Published on August 24, 2017November 19, 2017 by Nikki8 Comments

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 ❤️

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.

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!

Isla and Florence’s big balloon for the balloon send off.

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.

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.

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

Published on August 19, 2017November 19, 2017 by Nikki3 Comments

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.

img_4763-2 — 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.

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.

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

Previous blog post – The days after

The days after

Published on August 13, 2017September 23, 2017 by Nikki6 Comments

It’s been a really tough week.

Flowers and cards arrive everyday. Wedding invite replies arrive (we have postponed our wedding) the phone keeps ringing, and life carries on around me.
It’s unbelievably tough to go from doing everything for someone to them suddenly not being there.
The house is so empty, and there is nothing to do. I get up, move from my bed to the sofa or I lie in Lennon’s bed. Thank god for Lennon being at Keech, Ian and the girls.

On Tuesday we returned to Addenbrookes to collect Lennon’s death certificate. Because Lennon arrived at Addenbrookes, went to theatre and died all within 12 hours, his death had to be reviewed by a coroner. This meant that it was going to be quicker and less hassle for us to register his death in Cambridgeshire. It was difficult to go back. The only times we had ever been to Addenbrookes was when Lennon was in PICU. Plus we had last left there only a few hours after Lennon had died.
As expected, the causes of Lennon’s death were septic shock, bowel necrosis and Volvulus.
Holding your child’s death certificate in your hands is a surreal feeling. To be honest though, every minute since we left home on that Tuesday night has been surreal. Almost like a dream, like I’m watching myself.

We visited the Funeral Directors to arrange Lennon’s funeral. We decided on a plain white casket for Lennon and cremation. The service will be held at a crematorium and we will celebrate Lennon’s life afterwards – share stories and send balloons to the sky.
We also discussed with the girls what they would like to put inside the casket with Lennon for his final journey and Isla has decided that she would like to keep Lennon’s precious ‘cuddles cat’ to look after for him.

We have been in and out of Keech all week to spend time with Lennon. I find this comforting – I’m happier when I’m close to him.
We had asked if they could take some professional black and white photos of Lennon in his page boy outfit with his favourite toys.
They are beautiful pictures, Lennon looks so smart and peaceful. They also took some shots without his face in, with the thought that we could add them to our wedding album when we finally get married and he could still be a part of our wedding album.
The girls at Keech also took hand and foot moulds and fingerprint moulds. They have made hand and foot prints on canvas, and even made canvases that we can add the girls hand and feet prints onto, alongside Lennon’s.
I want as many memories as possible. I don’t want to forget a single little thing about my little soldier – that is now my biggest fear. Forgetting.

Our beloved community nurse came round for the last time. This was hard for me. The people that came into our home and our lives to help us, became my friends. The time and energy I put into caring for Lennon meant that I rarely saw my friends, therefore nurses, doctors and carers became my friends.
Nic had been a part of our lives since Lennon was a baby, she had seen the girls grow up. She had witnessed Lennon’s changes and improvements over the years. I loved sharing Lennon’s achievements with her, and I felt her pride in him.
She had become a pro at taking blood from a fast moving target – She had narrowly avoided pricking herself when accessing Lennon’s port in the last few weeks!
She had helped get us to Florida and heavily contributed to a hefty medical file that travelled everywhere with Lennon. She taught me CPR and how to take blood, helped with bowel washouts, and filled my bin up with medical waste!
But above all, she listened to me and my worries, calmed me down when I panicked, and talked me round when I sobbed down the phone.
She knew Lennon so well, and she knew that the Lennon on paper was not the ‘real life’ Lennon.
She spent almost 3 hours with us, talking over that day and the last 10 years. I didn’t want her leave.

Nic – we wouldn’t of got through this without your support, we wouldn’t of had all those years of no hospital stays without you. I can never thank you enough, and I will never forget what you have done for us all.

On Thursday afternoon Lennon’s casket arrived at Keech.
I broke down as soon as we walked into the room. My baby boy in a white coffin. It seems so much more ‘real’ now. The words inscribed on the lid made me sob. The way the girls have placed his toys and Mickey blanket on top and the love that has gone into making the room look so special is touching.
Ian and I sat with him and noticed how long his coffin was. He had grown so much taller in the last few months.

I feel so numb. The pain in my chest is still there, and the sorrow and sadness feels deeper every day.
I look forward to bedtime as I know for that one second when I wake, its like all this never happened and Lennon is still here.
Getting through every day feels like a battle, and when the day has ended, it is just another day without Lennon. He has left such a huge gapping hole in our lives, that I can never envisage being even partly filled.
I miss his baby soft skin, his thick hair with the coarse patch at the back, his clicking and quacking. I even miss the bruises on my legs, which have already faded to nothing.
I sit and watch videos and look through photos, in the effort to keep him alive in my head. And I wonder how will life carry on without Lennon??

Previous blog post – Tributes to Lennon

Goodbye

Published on August 7, 2017September 23, 2017 by Nikki35 Comments

Tuesday 1st August 2017, Lennon, Isla and Florence spent their first day at CHIPS summer playscheme. The girls there were amazing and happy to have Lennon there after his newly formed ileostomy.
He had a lovely day, playing with his sisters, walking around in his walking frame and playing at the sink and in the sensory room.
He came home and watched his favourite yo gabba gabba on the television whilst holding my hand and slapping my arm.

In the evening, Sian our continuing care nurse arrived. We bathed Lennon, did a full bag and dressings change. Lennon loved his baths – he often crawled or lead us to the bath. He was also known to climb into the bath when it was empty and lie in it! He loved to just stand at the taps and put his hands and face under the running water.
Lennon always was a true water baby.

The Reverend came to talk to Ian and I about our wedding, and Lennon played on his floor mat happily with his ocean drum and Argos catalogue until bedtime at 8.30pm.
Isla and I got into bed with him and he was so happy. Massive smiles and real belly laughing. It was so lovely, and in hindsight we realised he was saying goodbye to Isla – the sister he was totalled besotted with.

At 9pm we went into Lennon’s bed and he had disconnected his milk from his jejunostomy tube. This wasn’t an unusual occurance. We had to wash and change him and change his bed sheets which inevitably woke him up. Lennon hated being woken up (just like his mummy!)
At 10.15pm we checked on Lennon, he was not happy and we thought he was still grumpy from being woken up. After 20 minutes he began seizing. We gave him rescue meds, which had no effect so we rang for an ambulance. We were blue lighted into Lister resus with a full crash team waiting for us.

They managed to stop the seizures with some IV Lorazepam but Lennon remained unconscious.
He quickly deteriorated overnight until 9am Wednesday morning when our amazing team at Lister made the decision to crash call and put Lennon on full life support. CATS arrived and quickly intubated Lennon. Not long after being intubated, his heart stopped beating and the doctors performed CPR for 2 minutes. Lennon stopped breathing many times in the early years. More times than I can remember. But his heart had never stopped beating before then.

We left Lister and made our way to PICU Addenbrookes on full life support and maxed out on blood pressure meds. His kidney had completed failed and they suspected that Lennon had a mechanical bowel obstruction.

We arrived at Addenbrookes and as soon as Lennon was stable and they had switched over all the machines they took him down to CT. The scan showed his bowel was twisted and compromised but they couldn’t tell how much had died. We all made the decision for him to go to theatre, despite not knowing if he would survive surgery as he was on maximum support with nowhere to go – we had to give him that one last chance.
They opened him up and took his bowel and stomach out. The surgeons said there was way too much bowel that had died and they were surprised that he was still alive and fighting after what they saw. They stitched him up and kept him alive whilst Ian and I tried to prepare to say goodbye to our precious boy.

We desperately wanted to get Lennon to our Children’s Hospice, Keech. The girls at Keech, absolutely adore Lennon and I always hoped that the end would be there or at home and not in intensive care. The doctors kept telling us that he wasn’t stable enough to travel and we would risk losing him on the journey. A risk neither of us was willing to take.

At 2.30am on Thursday morning the blood pressure meds weren’t enough and they were pumping him with more and fluid just to keep him alive. So at 3am we made the decision not to prolong the inevitable any longer. Lennon had gone, I think he left us before we left Lister. The intensive care consultant who has been with us the whole time since we arrived (even scrubbing up and going into theatre with Lennon) took the breathing tube out and Lennon passed away instantly. Peaceful and dignified.

We got to spend the next 3 hours saying our goodbyes. It wasn’t long enough. But all the time in the world wouldn’t of been enough. I lay on the bed next to him placed his arms around me and held him tight. All the time trying to put my warmth back into his little body.

We were in a side room and the whole experience was very peaceful and calm.
We had 2 nurses with us. 1 who had looked after Lennon when he was a baby on Bluebell Ward, Lister. And the other who had done a nursing placement at Lennon’s school. It was fate and we will be eternally grateful that he had people who knew his journey caring for him in his last hours. They took out all his lines, cut locks of his hair and made hand and foot prints.

He was moved to his beloved Keech Hospice that afternoon. And will hopefully remain there until his funeral.

The girls there are going down to the Meadow suite all the time and taking really good care of him. Spending time with him and talking to him. They dressed him in his page boy outfit – he looked so smart and my heart shattered again knowing that he will no longer walk me down the aisle when we get married.

We are lucky that Lennon spent time at Keech over the last 8 years and had built up relationships with everyone there and 2 of our continuing care nurses who looked after Lennon at home now work there.
It feels so comforting to be there, close to Lennon – like a great big hug. The Keech girls are also taking care of us, making sure we eat and drink, helping us with funeral plans and making sure we are as involved as we want to be.

Words cannot begin to describe the pain we are feeling, it hurts to breathe. Every morning I wake up for the first second, I forget that Lennon isn’t here anymore and then it hits me like a bus. It feels like I’m loosing him all over again.
The thought of spending the rest of ours lives without Lennon seems unbelievable. He was such a huge part of our family and for the last 10 and half years my whole life has revolved around Lennon. I gave up everything for my little soldier – my career, going out with friends, money, holidays. And I don’t regret that at all. I would live the last 10 years over and over again if I could.

We are so incredibly proud of our little soldier. The odds were always stacked so highly against him right from the minute he was born, yet with every single step of his journey he fought so hard to stay alive. Some times were more difficult for him, but he always bounced back. He was like a cat with 9 lives!

We will treasure every single second of the last 10 and half years and all the amazing memories we were able to make with Lennon in our lives.

Life will never be the same, the light in our life has gone out.

“If there’s ever a tomorrow when we’re not together.. there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we are apart.. I’ll always be with you.”
Winnie the Pooh.

Previous blog post – For my son, and his friends