On the 3rd February 2018 it was 6 months since our darling boy departed life.
6 months without hearing his loud clicking noises or his cheeky belly laugh.
6 months without seeing his big glassy blue eyes or his arms flapping wildly.
6 months of not climbing into my little soldiers bed every night to squeeze him tightly and kiss him goodnight.
The pain of living my life without Lennon increases everyday. I miss him. I miss my old life. I miss being Lennon’s Mummy. It hurts. It is still a deep, heavy pain that I cannot describe.
I’m beginning to realise that grief doesn’t leave you – It becomes a permanent fixture in your life. You have to learn to co-exist with grief.
A few nights ago I had a vivid dream about Lennon. So intense and lifelike that for the first few seconds upon waking, I thought it was true.
I dreamt that Lennon had returned to life. I didn’t know how, but he was back with us, where he belongs.
I thought how lucky it was that we had kept his wheelchair – we could take him outside.
Lennon loved to be outside.
I was pushing Lennon in his chair up a steep hill, but he was too heavy and we couldn’t reach the peak.
Then he was back in his bedroom, lying in his beloved fishbowl bed. I had forgotten to administer his medications. I was angry and disappointed with myself that I had forgotten my strict, daily routine and worried that he would become poorly because of a stupid mistake I had made.
I subsequently moved Lennon’s large medication unit into his bedroom to help me remember.
It was all a dream. When the cold, unwanted truth hit me, I sobbed.
I was crest fallen that he wasn’t back, he is gone. Gone forever.
I was also saddened by the thought that I have lost my skills. Skills that I had proudly built up over 10 years. Procedures that I will never carry out again. Replacing a surgical jejunostomy tube, passing a nasal gastric tube, deep throat suctioning, replacing a gastrostomy button, putting on an ileostomy bag, accessing a port-a-Cath and taking blood.
All that expertise built up over so many years. I was proud of the responsibility I had bestowed upon me – yes, the pressure of it was immense and overwhelming, but being competent in all the procedures Lennon needed to enable him to stay at home with his family and away from hospitals was incredibly gratifying.
Keeping Lennon at home was very important to me.
Life has changed so much.
It is becoming more and more apparent to me that I am no longer a part of the ‘Special kids mums’ club. I am no longer living an extraordinary life.
I am a bereaved mother.
I can’t go back – no matter how much I wish that I could.
I had never thought of my daughters, Isla age 9 and Florence age 5, as being young carers and I had never identified them to Carers in Herts (our local charity supporting carers), although their school did know about Lennon and that their home life was not ‘normal’.
It had taken me a long time to realise that I was a Carer myself. In my eyes we were a just ordinary family with an extraordinary member!
What is a young carer?
I thought you could only be a young carer if you were a child caring for their parent.
I was wrong.
The Carers Trust defines a young carer as ‘someone under 18 who helps look after someone in their family, or a friend, who is ill, disabled or misuses drugs or alcohol’.
My girls helped me look after Lennon, their brother.
‘A young carer might help out with practical tasks, such as housework or preparing meals. They may provide help with personal care such as getting washed and dressed. They might help out with looking after their siblings’.
Isla and Florence helped to get Lennon washed and dressed, they made their own breakfast in the morning. Isla would help make Florence’s packed lunch and help her to get dressed for school.
How did I not realise that my daughters were young carers?!
Maybe because they were born into their life, and they had never known any different.
They were born into their caring role.
After Lennon died I met Jodie Deards, the Carers Lead for East and North Herts NHS trust at Lister Hospital and winner of the ‘Commitment to Carers’ award at the RCNi Nurse Awards 2017.
Since meeting Jodie I have become much more aware of what defines a young carer and the impact caring has on their lives whilst they are growing up.
At a time when they should be out having fun with their friends, doing homework and worrying about what clothes they should wear, young carers are busy helping out with cooking, cleaning and laundry, and providing both emotional support and physical care.
The facts shocked me –
There are roughly 700,000 young carers in the UK – that equates to 1 in every 12 secondary school age children.
And 1 in every 12 of those young carers is likely to be caring for more than 15 hours every week.
The Family Action report ‘Be Bothered’ written in 2012 and based on young carers and their education, found that most young carers are not known to be caring by school staff – Being a young carer can be a hidden cause of poor attendance, underachievement and bullying, and many young carers drop out of school or achieve no qualifications.
This in turn will have a huge impact on the rest of their lives.
Young Carers have dreams, ambitions and aspirations for the future just like every other young person and we should be making sure that they get the support and help that they deserve to achieve those dreams, ambitions and aspirations.
We made it through Christmas and New Year, and escaped only slightly scathed out of the other side and into 2018.
Christmas cards arrived and the sight of Lennon’s name missing from them all stung, tears pricked my eyes with the opening of each one.
You may be surprised when I tell you that only 3 people thought to mention that they knew Christmas would be hard for us this year and they would be thinking of us.
The rest all wished us ‘Happy Christmas’ and prosperous ‘New Year’ – How anyone could possible think that our Christmas would be happy and our New Year prosperous is completely beyond me!
Do you think if your child had died 5 months previous you would have a ‘Happy Christmas’?!
After Lennon’s Birthday and the deep sadness I felt in the festive period, Christmas Day was surprisingly going ok. I had made it out of bed in the morning and was dragged downstairs by 2 very excited girls desperate to see the delights that Santa had left behind during the night. Their excitement and enthusiasm carried me through the day, and I felt pleasantly surprised that Christmas Day wasn’t half as bad as I was expecting it to be.
Until we sat down to eat Christmas Dinner with Ian’s parents and his uncle. The space where Lennon’s wheelchair sat in the dining room suddenly seemed so vast and empty. I felt sad, and that was the start of the downward spiral.
Someone let it slip that Ian had booked a trip to Paris over Mothers Day with his mates. He intentionally hadn’t consulted with me before he went ahead and paid for it and everyone knew except me. He had been hiding it from me with no intention.
Ian wouldn’t be home on Mothers Day. I will have to get through my first Mothers Day without my son alone.
I couldn’t believe he didn’t even pay me so much as a fleeting thought when he booked it.
I was already struggling with my emotions and the pain of dealing with the first Christmas without my eldest child, this revelation tipped me over the edge – like rubbing salt in a cut.
As soon as we arrived home I made my way straight to bed and didn’t surface until late morning on Boxing Day. I forced myself to get up and dressed for my girls.
Ian and I had a blazing argument.
He walked out.
He came home.
We went drove to my mums separately.
We ate dinner, opens presents and I went home.
I took the Christmas tree down and packed away our first Christmas without Lennon. I wanted Christmas over and done with. I didn’t want anymore Christmas without Lennon.
Ian and I made up. Life’s too short to waste time arguing.
The day after Boxing Day we had tickets for Disney On Ice at The O2 – Lennon’s Christmas present that I had booked in the weeks before he died. We went every Christmas. Lennon wasn’t interested in presents so we spent money on days out instead – Lennon loved experiences and trips out and Disney on Ice was one of his favourites.
We travelled down on the tube and the atmosphere wasn’t great. The magnitude of the day ahead weighing heavily on us all.
The girls throughly enjoyed it and we all spent most of the performance pointing out the little things Lennon would of loved and talking about how much we missed him not sitting amongst us, shouting and arm flapping.
At the end of the performance, snow floated down and covered us, butterflies flew above the ice and we knew Lennon was right there with us.
The days before New Year were mainly long and dull. Ian went back to work and I didn’t have the energy or the enthusiasm to take the girls anywhere. I felt a heavy fog take over me with a New Year imminent.
New Year has been a sticking point with me since Lennon was born – celebrating a New Year with a life limited child, to me felt completely out of the question. The approaching year could be Lennon’s last – why on earth would we want to celebrate that?!
This time the New Year brought a new torment with it.
2017 knew Lennon.
Lennon knew 2017.
Lennon was alive in 2017.
2018 would not know Lennon.
Lennon would not know 2018.
In 2018, Lennon died last year.
That hurt me.
After spending days moping around not getting dressed and crying, by New Years Eve I had realised that I really did need to get out and make some attempt to save my drowning self.
I even put some make up on.
We took the girls for dinner at ASK and then went to the local pub for a few drinks with friends.
We had the girls with us, so no plans to stay out and see the Year change – I knew that would be a step too far for me. So we left the pub at 22:30 with Florence and ventured home. Isla wanted to stay with her friends, so we left her behind.
On the 1st of January 2018 I woke up strangely relieved. Relieved that it was all over. But still sad. Sad that Lennon died last year. Sad as the hard, cold realisation that time moves on hit me yet again.
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.
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.
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.
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?
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.
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.
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.
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.
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.
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 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.
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.
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.
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.
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.
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…..
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.
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.
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.
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.
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.
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.
He was first referred to NHS Nascot Lawn when he was 2 years old. At that time he had a Hickman line for TPN and fluids, 24 hour oxygen and a Peg-J tube for a 24 hour feed. After a few months of ‘tea visits’ the staff, Ian and I, all made the decision that respite at NHS Nascot Lawn would not work due to Lennon’s complex medical need – he was too medical complex even for NHS Nascot Lawn.
5 years ago, our family was in crisis. We could not cope with the gruelling medical routine Lennon needed in order to stay alive. We had Isla and I was pregnant with Florence. We were providing hourly medical care throughout the day and 2 hourly medical care throughout the night, with no break. We had a continuing care package but Isla was unable to sleep with a night nurse in the house, and after a year of trying this we had to stop – we were not up providing medical care for Lennon on those nights, but we were up most of the night with a frightened toddler awake and crying.
Lennon was deemed by Great Ormond Street Hospital (GOS) as one of the most medically complex children in the country. He was under 16 of the hospitals specialist teams. He was a frequent flyer to 4 of the wards at GOS. During a recent stay on one of those wards I was asked not to leave the ward as the nursing team were unable to provide Lennon with his complex medical care alongside his behavioural need. You see, Lennon was not only very medically fragile; he was severally autistic and had profound and multiple learning disabilities (PMLD). He was deaf blind, had very little communication (unless you knew him well) and absolutely no sense of danger. He was disabled, but very able bodied at the same time. His Occupational Therapist has never come across a child like him.
Once we had been referred back to NHS Nascot Lawn, and had a care package agreed by a panel we began the process of ‘tea visits’ and compiling care plans. This took 9 months. 9 months of qualified nurses training and becoming competent in being able to carry out my sons medical needs. 9 months of writing and re writing care plans. 9 months of preparation before Lennon was able to stay just one night at NHS Nascot Lawn.
We are a family from East and North Hertfordshire. NHS Nascot Lawn is the furthest respite provision in the county from our home and Lennon’s severe learning disability (SLD) school. 2 of the 3 county council commissioned respite facilities are fairly close to our home, and even closer to Lennon’s school, but neither were in any position to be able to accept Lennon and the high level of nursing input needed to keep him alive every day. He needed nursing care to be able to attend school, he needed nursing care to be able to live with his family at home, and therefor to be able to access respite care he also needed nursing care – Hence our need for NHS Nascot Lawn.
NHS Nascot Lawn was a lifeline for my family – and I do not use that word lightly.
Providing medical care to your own child for 24 hours a day, 7 days a week is gruelling – Both emotionally and physically. Getting up every 2 hours throughout the night, every single night is exhausting. You cannot roll over in bed and make a decision to ‘skip’ getting up tonight because you simply don’t have the energy. You have to drag yourself out of bed, force your legs to carry you to your son’s downstairs bedroom and wake up enough to be competent in carrying out the procedures he needs in order to make it through to the next morning. Life or death is a huge responsibility for any parent to have to deal with. No one would expect a nurse in a hospital to work the hour’s parents do, or take on the responsibility that parents take on when they are caring for medically complex child. And I haven’t even covered the effect that all of this had on my other children. They also needed their Mum and Dad’s time and affection. My 9 and 4 year girls often got up in the mornings, made their own breakfasts and packed lunches and got themselves washed and dressed.
Not only did NHS Nascot Lawn give Lennon an opportunity to have sleepovers and to spend time with children like him out of school, it also provided respite to our whole family. Time for Ian and I to catch up on well needed sleep, housework, and paperwork. It enabled us to spend quality time with each other, and with Isla and Florence. We lived like a ‘normal’ family for one weekend a month (my 9 years old phrase). We could go on holiday (holidays with Lennon were near on impossible, and travelling abroad was a no go as my sons medical team at GOS had advised us not to leave the country without a medical practitioner) and have fun days out at theme parks and the seaside. We could go out for meals, pop to the shops and stay overnight with friends and family. Things that other families take for granted every day.
After receiving the letter back in June informing us of the impending closure of NHS Nascot Lawn due to Herts Valley CCG’s (HVCCG) decision to withdraw funding, we were visited by the East and North Herts (ENH) Commissioner responsible for my sons care package. She had been researching respite options for Lennon. Only one option seemed viable at that time – Helen and Douglas House, Oxford. A 4 hour round trip from our home and Lennon’s SLD School. The ENH commissioner (and various other medical practitioners) had informed us that respite at the County Council commissioned facilities would not be an option, due to them having no qualified nursing input – despite HVCCG stating that all children with complex medical needs could be safely cared for in these units. To our family, Lennon’s medical team at GOS and Lennon’s health, this was not a safe option. Potential transfer to a hospital who did not know him and his individual medical complexities, a 2 hour journey for us to get to him if he became unstable and needed to be transferred to a hospital and a 2 hour journey for a child who requires hourly medical input takes an awful lot of forward planning. This then left us with no option for respite other than NHS Nascot Lawn. We were then faced with the impeding reality of being solely responsible for a child requiring an extreme level of medical input, with no overnight respite for the indefinite future. No break, no sleep, no time for our other children. To us, it seemed that the most vulnerable children and families in the county were being set adrift.
We were later advised to consider looking into a 38 week a year residential placement for Lennon – potentially costing the NHS in excess of £200,000 per year. All because we could not access 3 nights respite every month. This seemed extreme, not least because we wanted Lennon to live at home, with his family like every other 10 year old, but because it made no sense financially.
Lennon then died suddenly.
We knew him living into adulthood was unlikely and that every day he was alive was a miracle. We knew we could not keep him alive forever, no matter how hard we tried. The life of a medically complex child is fragile. They balance on a line between life and death.
Lennon is one of two NHS Nascot Lawn children that have died.
Lennon was not the only medically complex child living in Hertfordshire, he was not the first, and he will not be the last. There are, and will be in the future, more medically complex children surviving – Children whose families will need the help of a nursing care respite unit in order to carry on caring for their children at home.
Advancements in medicine mean children who would not of survived 10 or 20 years ago, are now surviving – But at a cost. These children will need medical input; and some will need the same amount of high dependency care that Lennon required in order to stay alive. What will happen when these families need respite? Where will they go? Or will they also be encouraged to look into residential care for their children?
When the NHS was launched in 1948, its values were based on 3 core principles –
That it meets the needs of everyone,
That it be free at the point of delivery
That it be based on clinical need, not ability to pay.
To my knowledge, these 3 values still apply today.
And the NHS still aspires to put patients at the heart of everything it does.
Since you died I’ve looked for you – looked for signs that your near by.
Are you watching us?
Do remember all the happy times we had together?
In the days after you died the smoke alarms in our house kept alarming at appropriate moments. Ironic really, I hate the smoke alarm – it’s so loud and controlling.
You could always hear it and you would burst into giggles whenever you heard it.
We would arrive home from Keech to the ear piercing ringing of the alarm. I’m sure the whole village can hear it.
In the silence of the night they would cause a disturbance – you never did like the quiet.
The most profound time was when the shrieking began just seconds after returning home from your funeral. Isla was crying – she wanted you back. Cue the smoke alarm. I said it was you, communicating to her that you haven’t left us. You’ll always be with us, in our hearts.
I look for white feathers and butterflies.
We have a white butterfly lingering outside the front of our house. It flies around the window, watching us, trying to get inside. I sit patiently watching it negotiate its way around the shrubbery.
When we were in Majorca, my mum found it fluttering behind the front window curtain.
I talk to you – not out loud, in my head.
If I could have one more minute with you I would tell you that I’m sorry.
I’m sorry I didn’t notice sooner.
I’m sorry I couldn’t fix you.
I’m sorry I didn’t try hard enough.
I’m sorry I couldn’t save you.
I would tell you how much we all miss you, how empty it feels at home, how painfully quiet and lonely it is without you. How much it hurts me that your gone. I would tell you how we talk about you all time, you are always on our minds.
Nothing is the same anymore, everything has changed.
I would tell you how I have my life back now, but I’d rather have you back. I’d swap in a heartbeat.
I would ask you to smile so that I could imprint your face onto the front of my mind forever.
But most of all, I would hold on to you tightly, squeezing your little body against mine. I would place my cheek against yours just to feel your warmth on my face.
If I had you back for just one minute, it would not be enough – I would want an hour, a day, a week with you.
I would want you to stay with me forever.
I’ll carry on looking for you, looking for signs that you are near by.