Goodbye

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

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


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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

Previous blog post – For my son, and his friends

35 thoughts on “Goodbye

  1. So sorry for your loss. Cannot imagine how painful this must be for you all. Beautifully written piece – I hope the happy memories of Lennon bring some comfort.

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  2. Oh my darling, my heart has broken for you all over again. It seems so wrong, so unfair when there are so many families who see a fraction of the beauty and joy that you saw in the world you shared with Lennon. It is the way he has changed your life I think, you have to have experienced true pain and face the fear of loss to be able to understand the true meaning of love. And that’s the gift he leaves you with, and why it hurts so, so much.

    Lennon defied the odds, he was the bounce back king, it’s not surprising he fought so hard to keep going when others expected him not to, because he had a wonderful life with you, Ian, Isla and Fo. So many amazing experiences, so many lovely memories, so much love. There is no avoiding the fact that he could be a challenge to look after, he was never one to do things in the boring way other children do, but because you treated him first and foremost as Lennon the little boy who loved to click, loved a good catalogue and had the biggest smile that’s who he was allowed to be when he was with you, and who we saw when we met him.

    He has touched so many people’s lives over the last ten years, changed forever by simply knowing him. That is an amazingly powerful legacy to have left. I will always be grateful to Lennon for liking GOSH enough to give me the opportunity to get to know you all. Lennon has always been special to me as he was the first child that I came across that really reminded me of Dominic as he seemed to share so many of his medical quirks. I am just so heartbroken for you that the thing we have all been so scared of for the last ten years has happened, but you can rest assured that he could not have had a happier life and your darling girls will have so many incredibly positive memories.

    I am always here if you need me. Much love x

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  3. I know I don’t know you personally but I have followed Lennons journey for a good while now.
    He was always so happy and had a great and fulfilling life with you and his sister’s.
    Life is so cruel and unfair, I hope you can take some comfort knowing that Lennons gorgeous smile touched the heart of every one who had the privilege of knowing him, even if only through a screen.

    Fly high sweet boy xx

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  4. Dear Nikki. I’m so sad to hear about the loss of your lovely son. We’ve never met but your efforts to save Nascot Lawn have been inspiring. Lennon was so lucky to have you and you to have him. He will never leave you I’m sure. Winnie the Pooh is spot on there. Sending you love and wishing you and all the family peace in the future. Xx

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  5. Such a moving, well written, heart-rending account of Lennon’s life and devastating end. What a fantastic family you all were, taking such great care of him. His needs were always met, in ways that were always above and beyond just caring for a child. I am in awe of these exceptional parents, who made their son’s short life as happy as it could possibly be.
    My love and blessings to all of you; may your beloved Lennon be at peace

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  6. Our deepest thoughts and prayers are with you at this difficult time. My daughter attended the same school and I know how difficult health issues can be and how life changing they are. Lennon will have a place in our heart forever. Lisa M and family

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  7. I’m so sorry to read that this has happened. Lennon was always such a loveable, cheerful little chap. So much character. You did an amazing job as a family of making every minute of his 10 years full of love. Sending you so much love at this time xx

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  8. This was so lovely to read, breaks my heart knowing the absolutely awful time you are all going through, you are an amazing person and beautiful family. My thoughts are with you all
    Xx

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  9. My heart is breaking reading this, I may never have met you but feel as though I’ve known you all your life, I loved your mums updates on how you were keeping her your dad and sisters on their toes and how you were doing at school. Lennon your smile will live in my heart for ever. Sleep tight beautiful boy xxx

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  10. Rip, brave beautiful boy, I cannot imagine the pain you are in right now! Remember the 10.5 amazing years, he’ll always be with you, snuggled in your heart! Really want to send the biggest hug to you all xx

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  11. God bless Lennon. Fly high with the angels. You were a fighter in your short years. But those short years you were truly loved by your amazing parents and sister’s who never gave up on you. Ten years you were loved and your smile touched many hearts. Sending love to a lovely family.xxxx❤️

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  12. So sad to hear lennon has passed away, ian,you an the girls were amazing for what you did for him.my thoughts are with all the family. Sleep tight lennon x from john clampitts mum.

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  13. I remember looking after your darling boy. I am so sorry to read this. He was loved so much by all of you. Much love
    Jessica (old paed community nurse)
    Xxx

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  14. What a beautifully written account of Lennon’s last days. My heart goes out to you and your family. I hope that you find some comfort in your grief.

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  15. I am so sorry to hear that Lennon has passed away. Ian,you and the girls are amazing for caring for him as you did. My thoughts are with all the families. Sleep tight Lennon x from john clampitts mum.

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  16. I’ve only just come across your blog and was so touched by your story of Lennon. We too had a premature baby, Oliver who we lost at 21 months due to various complications. So many people think a premature baby is just an early baby and have no idea of the issues and complications.
    We lost our son two years ago now and we had to stay strong for our older daughter. Life does get easier I promise. Sending lots of love from one mum to another xx

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  17. Gosh thank you for being so wonderful a person and loving, energetic mum. Yiu are an inspiration to us all. You are hurting now for you lost child and he was such a blessing to many and a wonder to me reading your tear jerking pieces for the first time, one after the other back through time.
    They help me on my journey as a 64 year old who has just begun palliative chemotherapy having stage 4 cancer if the biwel and kidneys. I walk at peace with both life as it is (and it is still more than wonderful!) but also with death. Death is a friend but not here yet. I too am surrounded by loving and caring family, friends, medical miracle workers and carers and colleagues. I still work as a soecislist teacher and therapist – I love what I do and all the children I ‘work’ and have so much fun with. They teach me so much and amazing me each session. I love them , their fsmilies and school teachers. Who woukdn’t. They keep me sane, happy, humble (sometimes) and on my toes ss there is always something more I can probably do to make their lives better insome way. I keep reading and learning but take time fir my own life too.
    You and your loved ones are grieving for Lennon now but the pain will gradually be replaced with softer and kindrr feelings. Your body will lead you forward and your path will propel you forward, nothing stands still for ever. You’ll know what to do in time. The void will fill. You will bless others in time and use your knowledge, love and skills to live , be happy and give to others again but not now. Just allow yourself to be yourself. Grieve, cry, and if you feel like being slone do so. If you feel like crying do so and hug ithers there ss you do. Silence snd tears are golden. Its a tough climb buy you will get there in time. Taking Lennon with you always but perhaps as a gentler warm bundle.
    Thinking of you.

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  18. I’m crying reading that. Lennon was a very special boy . Your photos show us the full life you guys made for Lennon. You knew ,like we do, it’s not quantity but quality and boy ,you gave Lennon quality as he did you guys.
    Lennons life impacted so much of your own being . I know this ,because my son is 15 and has a terminal condition. My heart’s breaks for you guys as it breaks for my own family too.
    Life is unfair.
    Thinking of you all , sending you guys more strength in the coming weeks,months ,years …
    Ger x
    ( It’s Me & Ethan )

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  19. I am so so sad to read this, and so sorry for your lose. Lennon sounds like a true fighter as do you. Keep going every day at a time, and thank you so much for sharing Lennons story with us, I hope it’s made life ever so slightly easier. Thanks for linking up at #fortheloveofBLOG. Claire x

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