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8 months

“The pain you feel now will ease with time.”

So far, I have found this to be statement untrue. As yet the pain has not decreased at all, in fact it feels like it has increased. With each day that passes I miss Lennon more and more, and it hurts. The gapping hole in our lives feels like it is slowly growing.

I’ve gone from sleeping like a log to sleeping badly. I’ve never struggled to sleep before. I toss and turn in bed, trying to turn my complex thoughts into some form of sense.

Recently Lennon appears frequently in my dreams – sometimes he is alive, others he is dead. And despite waking up some nights sobbing, struggling to catch my breath, I do get great comfort from seeing him. I find myself feeling upset when I don’t dream about him.

 

Sleeping peacefully.

 

Every morning I get up to yet another day without Lennon.

There are days when I have to force myself out of bed. Grief is exhausting – it seems to steal my energy leaving my head foggy. If it wasn’t for my girls I don’t think I would make the effort to get up and dressed every day.

Florence has been struggling with her grief. Her behaviour has been awful for over a month now. Granted, she has never been an ‘easy’ child (anyone who’s spent time with her will know that!) but even school have noticed that she is talking about Lennon more so than usual.

She regularly asks where Lennon has gone and it’s so hard for us to explain. Lennon is dead, but I have no idea ‘where’ he is….

 

Florence and Lennon enjoying the swings.

 

My little girl needs bereavement support – support that I cannot give her.

Florence is a strong, stubborn child and doesn’t like to ‘talk’ or explain how she feels. She is a complex character and even I, as her mother, find her difficult to understand.

Isla however is the opposite. She is an outwardly sensitive child who wears her heart on her sleeve. She is much easier to read and will always approach someone when her feelings overwhelm her.

 

Isla and Lennon during one of Lennon’s long stays at Great Ormond Street. Even then she missed him when he wasn’t at home.

 

Isla has fantastic support at school, which is good as she doesn’t like to get upset in front of Ian and I. School is her safe place to grieve. She struggles in the holidays – there is no where for her to hide her grief from us and the Lennon shaped hole in our home is so much more apparent in the school holidays.

Isla misses her brother and is struggling to coming to terms with the fact that she will never see her big brother again.

Watching my children grieve for their brother is as painful as my own grief.

 

Enjoying Torquay together.

 

I have been having flashbacks. My mind wanders back to that day. I replay moments minute by minute. I remember the last time he was at home, in his bed. I see Ian carrying him out to the ambulance.

I find myself back in the Intensive care unit, signing the consent form for Lennon to go to theatre. Lying next to him in bed while the doctors turns of his life support.

I try my hardest to override those thoughts with happy memories – Lennon’s bright, beaming smile and his clicking noises.

 

Big smiles for Daddy! 

 

 

Lennon enjoying the freedom of his walking frame.

 

Life without Lennon is still so difficult to comprehend.

I cannot imagine life without grief and pain and I cannot imagine the pain getting easier with time.

Maybe it will, maybe it won’t.

 

Lennon, Mummy and Daddy x

 

One in a Million

Lennon first saw a Geneticist when we was 6 months old and in the Neonatal Intensive Care Unit at Great Ormond St.

Lennon was 12 weeks premature and up until he rapidly deteriorated and became ventilator dependant, aged 5 months, the doctors and nurses involved in his care had all thought his medical problems were a result of being born too soon.

It wasn’t until Lennon’s first admission to GOSH, when many professionals from different specialist teams came to examine him, that it was suggested Lennon most likely had a genetic condition.

 

Lennon in Intensive Care.

 

That was just the start of our Genetic journey into finding a diagnosis for our little soldier – and the beginning of my love hate relationship with Google.

Over the first 4 years of Lennon’s life, he underwent every genetic and metabolic test available in the UK. All sorts of diagnosis’ were mentioned over that time – Schinzel Giedion syndrome, Rett syndrome, Mitochondrial disease, Pallister-Killian syndrome, the list goes on.

Lennon had blood samples, DNA, salvia and skin samples, muscle biopsies, bowel biopsies and lumbar punctures taken.

 

At Great Ormond Street hospital undergoing a round of testing.

 

I became obsessed. Google was my best friend, yet my worst of enemies.

I rang the Genetics team on a regular basis, pestering anyone who answered the phone for test results.

All the tests came back negative including a DNA micro-array analysis.

Lennon was then put on the DDD study. Over the years we never had any results from it, despite my many information seeking phone calls. When the study finished in June 2017, we were told that Lennon was never signed up because his sample processed as ‘incomplete’ and was never followed up.

Subsequently, we were invited on to the genome 100k project and we had an appointment booked with Lennon’s Geneticist at GOSH for October 2017, for myself, Ian and Lennon to provide DNA samples and sign up. But Lennon died in August, just missing out on that appointment.

My quest to find a diagnosis for Lennon was beginning to consume my life.

Until one day when I sat down and really thought about it. What would a diagnosis change? What would a diagnosis mean? How would a diagnosis change Lennon’s life and how we help him to live it?

I slowly came to the conclusion that a diagnosis was just a word. A word that would explain the wonder of Lennon. Just one word to write on forms and tell people.

But that was all.

That one word wouldn’t change Lennon and it wouldn’t change how we looked after Lennon – nothing would be any different.

 

Enjoying the FunFair.

 

I began to forget about a diagnosis and focused my energies on researching, planning and booking the most amazing experiences for Lennon, and memories for our family.

Yes, he was undiagnosed and no one really knew what the future really had in store him.

Yes, Lennon was in a wheelchair, was deaf blind and had a profound and multiple learning disabilities and complex medical needs, but why should any of those factors be a reason to stop someone from experiencing a full rainbow of life? Why should Lennon miss out on living a full life?

We took Lennon swimming as much as we possibly could – this was always a mammoth task. Changing Lennon’s dressings, keeping an eye on his dropping blood sugars, and keeping him warm was difficult but his excitement and enthusiasm to be in the water made all the stress of the situation melt away.

We went Ice skating as a family every year on Lennon’s Birthday in December, it became a family tradition. Lennon loved ice skating and roller skating – the faster the better!

Speeding around the rink at Rollercity.

 

We fundraised and purchased a walking frame and a special bike.

Lennon spent hours toddling around in his walking frame when he was well, and in the summer, we used to stand his walking frame in a paddling pool and he would splash away with such delight.

Splashing in the paddling pool.

 

The bike was incredible – it was a life changer for Lennon. He was a real thrill seeker and was enraptured by speed. Ian would take him for long bike rides, speeding through long, windy country lanes. Lennon flapping his arms and screaming with delight!

Lennon thoroughly enjoyed his bike.

 

I found a company who provided ski lessons to people with a disability. This was a little trickier and took a lot of planning. Lennon’s pan hypopituitarism meant his body disagreed with cold temperatures. But we found ways to work around that. Skiing became a favorite activity for Lennon – the buzz of sweeping down the slopes enraptured him. His face exuded excitement and happiness.

We also took him down the mini slope in a donut ring!

Neither Ian nor I have ever skied, yet our disabled son has.

One of Lennon’s favourite activities. 

 

We will be eternally grateful for the 10 and a half years we had with Lennon. A short life, but most certainly a life packed full of joy, excitement and happiness. And Lennon’s full life serves as a reminder that no matter what your disability or diagnosis, there are always ways to live your life – in the capacity you have – to the maximum.

Horse riding with school.

 

A few weeks ago I spoke to the Genetics team at GOSH. They informed me that they had stored various samples of Lennon’s – including his DNA, meaning that Lennon can still join the genome 100k protect. Ian and I have an appointment in March to provide our own DNA to be submitted alongside Lennon’s and to sign the forms.

And so the quest for Lennon’s diagnosis continues. Lennon truly was one in a million, and I’m certain when someone eventually finds a diagnosis for Lennon it will be extremely rare!

 

Our family of 5 x

 

6 months

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.

Lennon in bed. He loved sleeping at home in his own bed.

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.

Lennon at his ‘happy place’ the village ford. He could sit for hours watching the ducks and the water flowing underneath the bridge.

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 loved watching him sleep, especially when he put his hands under his head.

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.

 

Bath time. Lennon spent less time in the bath than we did getting him dried and dressed!

 

Preparing Lennon’s medications during a hospital stay.

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.

Forever.

I can’t go back – no matter how much I wish that I could.

Lennon and Mummy x

Who is a Young Carer?

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.

If you think you are a Young Carer or you know someone who might be, please visit The Carers Trust and find your local Young Carers support services – https://carers.org/search/network-partners

Jodie’s 5 top tips for Young Carers

1. Let someone know you have a caring role, such as your teacher.

2. Ask for help – nobody can cope alone.

3. Get a break and make time for yourself.

4. When you get tired or angry, step away and take a few minutes to listen to your favourite music.

5. You don’t need to do it alone – contact Young Carers in your county for support. If you are in Hertfordshire please contact Carers in Herts. http://www.carersinherts.org.uk/how-we-can-help/young-carers

For further information regarding Young Carers please visit –

https://www.nhs.uk/conditions/social-care-and-support/young-carers-rights/?

https://carers.org/about-us/about-young-carers

Our first Christmas and New Year without Lennon

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.

 

Isla and Florence on Christmas morning.
All Florence wanted for Christmas was Lennon, and a pink car that she could drive.
Isla opening presents.

 

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.

That hurt.

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.

 

Our Christmas tree, full of memories.

 

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.

 

Lennon enjoying Disney on Ice, Christmas 2016.

 

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 butterflies in the Disney on Ice performance.

 

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.

A lot.

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.

 

Florence enjoying ASK!

 

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.

I don’t want Lennon to be left behind in 2017.

Forever in 2017, Forever 10.

 

Lennon and Mummy x

 

First Christmas

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

The pain I felt then was incredible.

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

 

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

 

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

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

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

 

Enjoying the Christmas displays at Van Hages.

 

 

Christmas Day 2016.

 

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

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

And me.

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

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

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

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

 

Christmas 2009.

 

 

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

 

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

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

 

Christmas 2016.

 

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

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

 

Magic Kingdom, Florida, December 2015.

 

Forever 10 years old

Dear Lennon,

Today is your 11th Birthday – The first time we will celebrate your Birthday without you.

I haven’t ordered the balloons that you loved, or the fabulous Yo Gabba Gabba cakes that you could never even taste.

I haven’t been out to the shops and collected a plethora of catalogues for you to flick your way through.

I haven’t got your big birthday badge and the lights we decorated your wheelchair with.

 

Lennon spent his 9th birthday at Universal Studios in Florida!

 

We celebrated each one of your Birthdays as if they would be your last. Just incase.

I’m so glad we did.

You never really understood Birthdays – but year after year, as you grew older, I think you got used to knowing it was ‘your’ day. A day that was specially made for you.

Lennon’s Day.

We kept the day the same every year, in hope that the routine would let you know it was your Birthday.

We would send you off to school on the bus – with your huge birthday badge, lights and balloons. Just to ensure that everyone at school made a big fuss of you!

 

Lennon’s 7th Birthday.

 

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.

 

Ice Skating on Lennon’s 10th Birthday.

 

 

Ice Skating on Lennon’s 6th Birthday.

 

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.

 

Lennon’s 1st Birthday party.

 

With each year that passed, we grew prouder of your fight for survival and we felt so incredibly lucky to of celebrated yet another birthday with you.

I treasured your Birthdays like gold dust. Each one more precious than the last.

 

Lennon’s 9th Birthday in Florida – By far his most magical birthday!

 

Last year we went all out for your 10th Birthday.

10 whole years with you.

We considered you reaching 10 the most amazing achievement!

 

Singing Happy Birthday.

 

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.

 

Before the big ’10’ party.

 

Today, I will make you a birthday cake and your sisters will blow out your candles.

Today, I will blow up your balloons, we will write you messages and send them to the sky for you.

Tonight, we will go Ice Skating for you, like we always did on your Birthday.

When Daddy falls over we know you will be laughing with us.

Today, like every other day since you died, I will think of you and wonder where you are. Wonder whether or not you are happy and pain free now. Able to celebrate your special day.

Lennon’s day.

 

Mummy and Lennon on his 10th Birthday x

 

December 3rd, 4 months.

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.

 

My gorgeous boy.

 

I want to be able to tell you that the pain has lessened slightly, but it hasn’t.

It’s still there.

It smacks me in the chest when I awake every morning. It still hurts, but the pain is becoming familiar.

Some days I feel like I’m drowning in pain, my body feels heavy and my head foggy.

Some days I feel ok.

There are rare days when I feel good. Not happy, good – I can’t imagine feeling real, true happiness ever again.

Our home is quiet and bare.

No nurses or carers in and out at all times of the day.

No school bus.

No deliveries.

No mad drugs runs to various collection points.

And the phone barely rings anymore.

They came and took away Lennon’s bed. The magnitude of this was immense – not only is there now a gapping space in Lennon’s room where his bed stood, but there is also the cold fact that now Lennon has nowhere to sleep in our home. He is definitely not coming back.

Florence cried for days. She was always very aware of the fact Lennon could only sleep in his bed. Now his bed is gone, and that means he cant sleep here anymore – he is never coming home.

I gave away Lennon’s bike to another family – a little boy similar to Lennon. I hope him and his family experience as much joy from it as Lennon did.

His walking frame, medical ancillaries and special milk feed were shipped to a children’s home in Zimbabwe.

 

Escaping from respite! 

 

The sympathy cards came down.

I found the empty spaces in our home unbearable. I brought a coffee table for our living room to fill the gap where Lennon sat in his wheelchair to watch television.

Lennon’s clothes are still in his drawers, untouched. His drawers are still in his bedroom. It is still Lennon’s bedroom – It will always be his bedroom.

Ian and I went back to Great Ormond St to see Lennon’s surgeon, gastroenterologist and his complex care nurse. To say goodbye and to thank them for playing such a significant part in the 10 years of Lennon’s life.

But also to settle our minds – would the outcome of been different if Lennon had of been transferred to GOS instead of Addenbrookes? Would Lennon of had a better chance of surviving if he had of got to theatre any quicker? Would the outcome of been different if it was Lennon’s surgeon who performed that last chance surgery? – The surgeon who often joked he knew Lennon’s inside better than his outside.

The ‘what if’s’ in my head had gained momentum as the weeks passed – Lennon’s surgeon thwarted them in their tracks.

Lennon’s heart had stopped beating less than 12 hours after he became unwell – the sepsis had already taken over his little body.

Lennon’s surgeon had read the theatre notes from Addenbrookes – the surgeon had written that they were astounded Lennon was still alive considering the entanglement the saw in his small bowel. It was apparent that It didn’t matter who performed the surgery or when he got to theatre – Lennon’s small bowel was beyond saving.

Ian and I left in tears.

We walked around the City for hours. Talking, crying and remembering. I drank too much.

It was heartbreaking to go back and have to hear what we did. But I needed to hear it from the man who knew my little soldiers bowel better than anyone. The ‘what if’s’ have vacated my head.

As well as campaigning to save Lennon’s beloved respite centre, I have been doing small amounts of work here and there. I am enjoying it, and very slowly I’m beginning to find myself again. Build myself a new life. It’s hard – I loved my old life, I enjoyed being a part of the special club I was in. I loved caring for Lennon and I made it my purpose in life to make sure he best quality of life possible. Now I’ve been kicked out and pushed into a new club – The Bereaved Mum club – A club I didn’t chose or want, but I suddenly ended up in.

One thing I do know is that Lennon put me on a path. A very different path from where my life was heading. He took me on a journey, gave me an experience that not many people get from life. I need to carry on down that same path and use the knowledge and expertise that Lennon taught me to help change the system for other families.

December the 3rd – 4 months since Lennon died.

My birthday.

 

Mummy and Lennon x

 

Who cares for the Carer?

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.

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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.

 

Memories – Prematurity Is.

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.

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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.

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Christmas Eve 2006. The first time we held Lennon – he was 3 weeks old.
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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.

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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…..

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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.

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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.

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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.

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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.

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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.

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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.

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Lennon and Mummy x

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