This is a post that I wrote back in June 2017 for Carers Week. The week we first found out our beloved NHS respite unit, Nascot Lawn, was due to close as a result of HVCCG withdrawing their funding.
Lennon sadly died in August 2017 and I am no longer a Carer – but I was for 10 years, and I would of been for another 10! Despite it being extremely hard work and all consuming, I loved looking after Lennon. My life had a purpose – keeping my son alive and happy, and making sure that he reached his full potential in life.
………………
As a Carer providing 24 hour round the clock care to my son I get paid 37 pence per hour. Yes you read that correctly – 37 pence.
I was once told If we put Lennon into a residential
Placement for 48 weeks of the year it would cost in excess of £200k! (Mainly because his medical care is so complex.)
I have no senior, no union, no one who takes over from me, no back up when I’m ill or my other children need me – it’s just me on own. Don’t get me wrong, Lennon’s dad is amazing, but he has a full time job and he can’t be my safety net.
Nurses get paid a pittance for what they do, but they clock on and off – I don’t. I’m a nurse for 24 hours a day 7 days a week, would that be allowed in any hospital??!
Even when Lennon is in hospital I am still providing him with all the medical care he needs, I don’t get a break as I’m not allowed to leave him alone on the ward in the care of the nursing team as he is too complex. Yet I have no nursing or medical degree or training.
I am responsible for a gastrostomy, jejunostomy, ileostomy, a 24hour feed, making up extra fluids, a ton of medications including controlled drugs and injections, strict fluid input and output measuring and charting and deciding what is a medical emergency and what isn’t. Ordering in and managing supplies from 6 different companies. I have to remember appointments, deal with professionals, fill out untold amount of forms, attend meetings.
I also have to be my child’s eyes, ears and communication aid. He communicates through me.
I have to be on the top of my game always. I cannot take my eye of the ball ever, not for one second.
Is this fair?
He is my son, and it is my duty to care for him whatever his needs are.
I feel carers deserve a little more acknowledgment and respect for what they do, day after day. Most of us give up our whole lives for the person we are caring for.
I gave up my life in order to give my son the life he deserves.
Mummy and Lennon, during a stay at Great Ormond St.
I wish I had kept a diary of Lennon’s Neonatal Intensive Care (NICU) days.
Looking through the many photos through that period of my life, it feels like only yesterday we were on that multi hospital rollercoaster ride, yet in another way it feels like it was the 11 years ago that it very nearly is.
I was a sad person then – devastated that my body was unable to carry my precious baby boy to term. I just about managed 28 weeks of pregnancy. Frightened that my baby wouldn’t survive the awful lifesaving support and treatments he needed to undergo just to give him that small flicker of a chance at life.
I was tired and desperately sad.
Lennon was transferred from the QE2 Hospital in Welwyn Garden City to Chelsea and Westminster when he was just 2 days old. He needed an oscillating ventilator and the nearest unit with one available was Chelsea. The night they moved Lennon I was still recovering from a caesarean section and preeclampsia, the midwives wouldn’t let me travel with Lennon and refused to discharge me. I stood by Lennon’s incubator for hours whilst the specialist transport team prepared to take Lennon on the 1 hour journey. It took them over 8 hours to stabilise him for the journey. At one point they debated whether or not it was safe enough to transfer him at all, and questioned the likelihood of him surviving the journey to Chelsea.
I lay in my hospital bed that night, on a maternity ward full of crying babies and wept. Tears upon tears for the baby I wished were in my arms, the baby I may never see alive again.
Late the next evening I discharged myself, still suffering the effects of the preeclampsia, but desperate to see my baby. I was an emotional mess. Walking out of the hospital with an empty womb and empty arms was the hardest experience of my life up until that point. We found a late night chemist, I needed a breast pump.
It wasn’t supposed to be like this – We were supposed to be walking out of the hospital with our baby, heading home full of happiness and excitement, ready to begin our journey into parenthood.
Ian’s father had travelled to Chelsea and Westminster hospital that afternoon. He waited hours for the nurses to get Lennon stable enough for a visitor. The staff informed Lennon’s grandfather that Lennon was extremely unwell and that they were deeply concerned about his critical condition. He couldn’t get much sicker.
The following day we made it to Chelsea and the plan was for Ian and I to stay there for a few nights, or at least until Lennon’s condition improved. My tiny baby boy looked so poorly. He was covered in wires, tubes, probes and monitors. He looked bigger than the other babies – At his birth weight – 2lb 9oz, Lennon was more than double the weight of most of the other babies on the unit, but was by far the sickest at that point. He needed so much support to stay alive. I now know the reasons behind the high level of support and why he needed all the IV infusions and treatments.
5 day old Lennon at Chelsea and Westminster NICU.
TPN because he couldn’t tolerate any feed into his stomach.
Medicines to bring up his dangerously low blood pressure and blood sugars.
Anti-biotics to rid the sepsis that was taking over his small body.
An oscillating ventilator for his paper thin lungs that couldn’t cope with the ‘normal’ breathing pattern of a conventional ventilator.
Medicine to try to close a large hole in his heart.
Needles into his bladder to attempt to find the reason for his kidney failure.
A light for his Jaundice (a bit like a sunbed – He even had a super cute eye mask!).
A lumbar puncture to check for meningitis
Daily blood transfusions.
The list goes on…..
I was scared. My baby looked so fragile and vulnerable. I wanted to be close to him but he hated being touched, every time anyone put a hand into the incubator he would drop his oxygen saturations and his blood pressure – it felt like he was communicating to us that he just wanted to be left alone. That he was scared we would break him.
I spent endless hours sitting by Lennon’s incubator, listening to the radio that was kept by his bedside, reading his charts and questioning everything that was recorded. Through the clear Perspex wall of the incubator I willed him to stay alive – begged him to stay alive and let me have a chance to be his mummy.
It was December and the run up to Christmas, joy and happiness were everywhere. Lights, decorations, gifts, people on the streets smiling and laughing, the underground full of tipsy workers traveling home from their Christmas celebrations. I wanted the whole world to stop – just like mine had. My sad face and heavy heart didn’t fit in. I didn’t want to be in this limbo. One evening after leaving the hospital I contemplated walking out on the Fulham Road into the path of an oncoming bus. I felt out of control and so low.
Days turned in to weeks and Lennon began to improve very, very slowly. This was the rollercoaster we had been told to expect – Two steps forward, one step back. It was 3 weeks before we held Lennon for the first time – Christmas Eve.
Christmas Eve 2006. The first time we held Lennon – he was 3 weeks old.First ever cuddles with Daddy x
It was all I wanted for Christmas for that year, to be able to hold my baby in my arms. It wasn’t an easy task for the nurses; Lennon was still unstable and attached to so many machines and IV pumps. But they managed it and my much wanted and needed Christmas wish was granted.
6 weeks after Lennon first arrived at Chelsea and Westminster he was taken off the ventilator and was now dependant on CPAP to aid his own breathing. He still needed a fair amount of IV support, but seemed to be tolerating small feeds into a Nasal Gastric (NG) tube. And so we were transferred back to Lister Hospitals NICU in Stevenage, much closer to home. We were over the moon – One step closer to home! Shorter journeys to the hospital also meant I could spend much more time with Lennon, and the visiting hours at Lister were much less strict than they were at Chelsea.
Lennon spent the following 6 weeks dependant on CPAP. We were able to hold him most days, he had his first bath, and despite Lennon still being in an incubator because he was unable to support his own temperature, we were encouraged to get him dressed every day.
By the time Lennon had reached his due date – 27th February 2007, he was in the Special Care room and only needed nasal cannula oxygen to help with his breathing. He was prescribed an array of medication, and although he still needed his NG tube he taking a small amount of feed orally. He occasionally would stop breathing and needed to be resuscitated. It was scary, but it was nothing we hadn’t gotten used to seeing over the last couple of months. Things were looking up and home had been discussed a few times. Both Ian and I were understandably delighted by the slightest mention of bringing Lennon home, although at the same time nervous about caring for an oxygen dependant baby needing tube feeds. And the thought of him stopping breathing at home petrified me, but I really wanted my baby at home, where he belonged.
Lennon on his due date.
Unfortunately this wasn’t to be. Lennon had other ideas – his breathing deteriorated quite rapidly over the course of a few days, until he needed to be intubated and ventilated again. That day will stay with me forever. I relive that day many times in my head, repaying the scenario minute by minute.
The Doctor reviewing Lennon and transferring him back into the NICU room.
The look on all the nurses’ faces and the tears in their eyes.
The mum that took me out of the room to call Ian and tell him to get there as quickly as he could.
Being led to the ‘bad news’ room and sitting in silence, alone, waiting for someone to tell me my baby hadn’t made it this time.
Ian arriving, crying on my shoulder.
Being led back to Lennon and asking if the nurse if he was going die and her replying that she couldn’t answer me.
Drinking copious amounts of sugary tea…..
A very puffy Lennon back on the ventilator. Just over a month past his due date.
No one could find a reason why Lennon had suddenly become ventilator dependant again. All sorts of doctors visited to NICU to review him. They suspected Lennon had chronic renal failure and an endocrine issue but nothing that would hinder his ability to breathe unaided. They even called in an adult cardiac doctor who carried out extensive test – they all came back normal. I was devastated. We had tumbled so far backwards. I returned to sitting helpless at Lennon’s bed side. I read him stories and learnt to crochet to help pass the time.
Winter turned to spring and we were still in NICU at Lister holding a bedside vigil, whilst waiting for a bed to become available on the Intensive Care unit at Great Ormond St Hospital (GOS). It was decided they were only people who could get to the bottom of why Lennon could not be parted from a ventilator. It took 5 weeks for that day to arrive. I’ll never forget the transport team turning up, and not quiet believing that the day had finally arrived.
In the transport incubator ready for his transfer to Great Ormond St NICU.
Lennon looked so big inside the transport incubator.
As soon as Lennon had arrived at GOS they began their extensive tests. It didn’t take long for them to diagnose Lennon with Chronic Renal failure – he had 1 cystic kidney and a small ball of cysts where the other should have sat. They also diagnosed him with pan hypopituitarism – his little body was not producing thyroxine, or growth hormone and they suspected that his adrenal glands were also dysfunctional. The most significant finding was in Lennon’s heart – His PDA (the shunt that snaps closed when a baby is born) was gapping open. The cardiac surgeon had said it was one of the biggest he had ever seen.
Once Lennon had undergone cardiac surgery he was taken off the ventilator. And after a 2 week stay at GOS Lennon was discharged back to Lister and into a cot for the first time! I couldn’t have been happier – my little soldier had cheated death yet again and maybe this time we were coming to the end of our Special care journey.
Post cardiac surgery and off the ventilator.
We prepared for Lennon to come home with us.
For us to finally be his Mummy and Daddy.
For us to be able look after him and make all the decisions.
We had resuscitation training and our house was fitted with home oxygen. We collected a prescription of special milk and a ton of medication. We borrowed saturation and apnea monitors, blood pressure and suction machines from the hospital. Our small flat was over taken with medical supplies. I was scared, but above all so very excited to bring our son home for the first time. At various points over the 6 months I doubted this day would ever come. I always thought Lennon was not destined to come home, go to school, or grow up. I could never picture at home – no matter how hard I tried.
The first time Lennon went outside without being in a incubator. The first time he had been outside and felt fresh air on his face. He was almost 6 months old.
We were allowed to take Lennon off the ward for small amounts of time to get used to looking after him without the support of the amazing nurses that we had come to rely on over the last 6 months. We spent a night in a bedroom on the ward the night before we brought Lennon home.
Neither of us slept.
I spent the whole night either holding Lennon or staring at him. Disbelieving the day had finally arrived.
On 24th May 2007, after 6 months, we walked out of the Special Baby Care unit. I carried Lennon in his car seat, with an oxygen cylinder on my back. Down the very corridor I had spent the last few months walking up down, watching mothers leaving the delivery suite holding their babies. Those mothers haunted me – all I wanted was to walk out of the hospital holding my baby. Finally it was my turn.
Lennon on his way home!
Our Special Care community nurse followed us home. She stayed with us until we had settled in and felt confident enough for her to leave.
I was ecstatic!
Poor Lennon was moved about like a doll. I placed him in his Moses basket, into the swing we had brought him months earlier. I cuddled him, stared at him – Almost trying to make up for the last 6 months. I still could not believe that my precious baby boy had survived and was finally well enough to come home with us.
In his moses basket.
That night before we went to bed, I gave Lennon his medications before his last feed of the day.
He went blue and floppy in my arms.
I called for Ian, Lennon had stopped breathing.
He still had a pulse.
I laid him onto our bedroom floor and started CPR whilst Ian rang an ambulance.
My adrenaline kicked in and I knew what I had to do – I didn’t even have to think about it. By the time the ambulance had arrived Lennon was breathing again. I had saved his life. Thank goodness for the CPR training I had done before leaving hospital.
I felt numb.
Lennon ended up back in hospital that night, and a new journey began. 6 months in Special Care for not even 24 hours at home.
So much happened over those 6 months, and I learnt so much. I learnt that things aren’t always as they seem. I learnt the meaning behind the saying ‘The best laid plans of mice and men often go awry’ – no matter how much we or anyone else planned, the potential for something to go against that plan was always there. Lennon often wrote his own rule book!
The biggest lesson I learnt from being in NICU was patience – I never had any before Lennon was born. I struggled to wait for anything.
Patience was the main ingredient I needed to help me get through the 10 years that followed.
Ian’s proposal, In Give Kids the World, Florida 2015.
Today should of been our wedding day. Lennon was going to walk me down the aisle.
In Torquay – before Children.
Instead, we went to the Crematorium to collect Lennon’s ashes. It was hard – knowing that he should of been holding my hand, walking down the aisle beside me this afternoon. Instead I was carrying him out of the Crematorium to the car, in a bag. He feels so light.
I sat in the car with his ‘scatter tube’ on my lap and sobbed.
The warm tears running down my cheeks feel so familiar now. In a way that I can not explain, I feel happier when I am sad – I am happiest when I am thinking of Lennon, but sadness always appears when Lennon is in my head.
Harwood Park Crematorium.
It feels strangely comforting having his remains with us. Another feeling that I can not explain. I miss him dreadfully, and I want to hold onto every tiny little piece of his being and his life. Almost like trying to prove he was here, that the last 10 years did happen – they weren’t just a dream.
We wanted to mark today in some way, just Ian and I. We have been researching things to do all week and drawn a blank every time. Maybe because we know what should of been happening today or maybe because we haven’t yet remembered how to enjoy life without Lennon?
In the end my parents kindly took the girls for a sleepover and we jumped on a train to London.
On our many trips and stays in Great Ormond St Hospital over the last 10 years we always took Lennon for long walks around the West End and the City. Lennon loved being outside, especially in London. He enjoyed the hustle and bustle of the crowds.
Lennon enjoying the water fountain at Leicester Square.
We made our way to Covent Garden, had lunch and booked theatre tickets to see School of Rock – appropriate in that Lennon adored Jack Black (At one point we actually believed that Lennon thought Jack Black was Ian, when he watched him in his beloved children’s show Yo Gabba Gabba).
We then walked down to The Southbank – a walk we had taken with Lennon on many occasions.
I’m so used to pushing Lennon’s wheelchair everywhere that walking makes my hands feel so very empty. I feel awkward when I walk, my arms hang by my sides heavily. My hands weighed down by my grief.
We rode on the flying swings and booked to travel on The London Eye.
The flying swings on the Southbank, London.
At 4pm when we should of been getting married, we were up in the sky above London. As I took in the London skyline, I thought of Lennon and how much he would of enjoyed siting in a clear pod, high above the water. I closed my eyes tight and imagined him there beside me, his beaming smile, mouth wide open and his skinny arms flapping rapidly.
I loved the way he always seemed to experience the world so differently, he appeared to see things we didn’t.
The view from The London Eye towards East London.
We went for drinks on the Southbank, in an enclosed area (which Ian likened to being ‘In the Night Garden’, another of Lennon’s favourite television shows). We spoke about Lennon, his life, and his death. We relived the happy times and the sad times, sharing our laughter and tears.
Ian is the only person in the whole world who knows how I truly feel. He is the only person who has seen what I’ve seen, and experienced what I’ve experienced. We have shared extreme highs and dark lows. I feel closer to him now than I ever have, and I know that I could not of survived the last 6 weeks – no, the last 11 years, without him.
At the British Grand Prix. One of my favourite days with Lennon.
School of Rock was fantastic. Dewey Finn played by Gary Trainor was perfect for the part – I almost believed he was Jack Black at points in the performance. He portrayed even the slightest traits of Jack’s quirky personality.
And the kids were incredible, so young yet so talented. Happiness beaming from their innocent faces. I wondered if I would ever again genuinely feel as happy as they looked …..
School of Rock – West End Show.
We walked back to Holborn through the quiet, dimly lit back streets. My hands still empty and heavy, but the shattered pieces of my heart full of love for the man who has held me up and kept me ambulate over the last 6 weeks. The man whom I should of married today. But Lennon clearly had other ideas!
What we have experienced hand in hand, side by side, is so much more meaningful and deeper than saying ‘I do’.
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.
Our mobility car being taken away.
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.
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.
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.
Lennon getting up in the morning.
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.
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.
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.
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.
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.
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.
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??
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.
Week 5 of being out of our home for Lennon’s adaptations and the little guy has most certainly kept us on our toes this week!
We picked him up from Nascot Lawn (Respite) on Sunday and he just wasn’t himself. As the week went on we couldn’t snap him out of it and the guessing game as to what was wrong started. And then on Thursday evening Lennon started having seizures and lots of them. On Friday morning woke up with a gastro bag full of very dark green fluid (a clear indication his bowel isn’t functioning as it usually does)
I took the fluid into Lister to get it cultured and told the community nurse about the seizures and he told me to bring Lennon in straight away 😢
Once we arrived in A&E Lennon’s seizures were almost back to back and he was given a dose of IV lorazepam. This stopped the seizures and Lennon was back to his normal happy clicking self! Until it wore off and the seizures begun again. They tried to run phenytoin through his port a Cath but it wouldn’t go through. By the time we were transferred to the ward they were coming thick and fast again so more IV lorazepam.
The seizures carried on all day Saturday and Lennon was discharged in the afternoon. They have diagnosed partial complex seizures as well as tonic seizures. An urgent sleep deprived EEG has been booked (as the previous one showed nothing) and we have been told to keep a book of seizure activity and keep videos.
They are very reluctant to start medication due to Lennon’s very complex medical background and his severe endocrine issues. They think that is a job for GOS – Which I agree with.
Life is never boring with Lennon! And being away from home for 5 weeks now is taking its toll on us all. Looking after Lennon away from home is tough, but when he is not himself it’s so much more difficult.
Fingers crossed for much less eventful and more fun filled half term!
Living with Lennon 