Requiem for Eleri

Manor farm summer 2019-420It has been almost seven long weeks since we said goodbye to our girl.  I am still struggling to marry the pictures of Eleri full of life with the idea that she isn’t here anymore.  I still can’t quite fathom how someone who was so full of life and ambition has gone.  I’m still asking why the universe gave her to us but then decided to take her back; why she has been returned to dust.  People tell me there must be a reason, that her being taken has some bigger purpose; I can’t yet see that myself.   Unfortunately, these are all questions we will never have answered.  We have to move on.  It seems almost impossible now, but others have experienced this and they are still living their lives.  We will too.

I decided that along with chronicling our dealings with grief I would talk more about Eleri’s personal experiences with cancer.  I had hoped that one day she would be able to talk about them herself, unfortunately she will not be able to make her voice heard.  I will attempt to talk about how cancer affected her, but to begin with I wanted to give everyone a better understanding of who she was.  It’s so easy for her to become synonymous with cancer, but she was so much more than that.  At her ceremony Rob and I were determined for her to be remembered as she was before cancer ravaged her body.   We wrote and read the following in the hope that people will remember her for who she was, not what took her from us.  On my return to blogging it seemed the best way for me start building a picture of Eleri and therefore highlight just how much cancer changed her.  I hope you enjoy reading about our darling girl.

Wonderful Eleri
 When we sat down to write this tribute, we felt suffocated by the question ‘how do we write about an eight-year-old girl whose life had been so cruelly cut short?’.  We couldn’t seem to get past the thought of her live un-lived; her dreams and ambitions left unfulfilled.   So, we stopped, took a breath and had a quite word with ourselves. After a few days of embracing grief, we came to the conclusion that Eleri was not a normal eight-year-old. She was an extraordinary girl who crammed more into her short life than most of us dream of in a lifetime.  With my sass and Rob’s, shall we say, tenacity, she was destined to leave an unforgettable impression on anyone she met as well as her own unique Eleri shaped pink and sparkly mark on the world. 
 
We then had to get past the big ‘C’. Childhood cancer enveloped Eleri’s life and tried to take away who she was.  Of course, there were lots times throughout the two years that the real Eleri shone through, but the strain for fighting the monster in her body took its toll. Other parents talk about how their child received their treatment without complaint and quietly dealt with the suffering behind a smile.  Not Eleri! I think that all the medical staff will agree that Eleri had her own ideas on how her treatment should proceed.  She wasn’t shy on letting them know what she thought.  From correcting the pronunciation of her name, I don’t think poor Gary from the Great Western will ever forget her dressing down, to sacking one of the best surgeons in the country from her bed in HDU, Eleri used every available word in her vocabulary to let them know exactly how she felt.  Thank you to all the wonderful NHS staff that supported Eleri throughout her treatment.  Thank you for your compassion, professionalism and very thick skins. You all remained unshakable no matter what she threw at you and for that, we will be eternally grateful.  At this juncture it is so important to remember that Eleri was so much more than the illness from which she suffered.   
 
So, what defined Eleri? It certainly wasn’t her diagnosis.  Cancer took her from us, but it did not define who or what she was.  Eleri was a vivacious, happy and spirited girl. She thrived on the joy of life and wanted to experience everything that it could offer.  She was cheeky, funny, inquisitive and clever.  She was staunchly independent and refused to bend to anyone’s will except her own.  When Eleri came into this world, we were determined to raise a strong, intelligent, resilient woman that knew her own mind and wasn’t afraid to show it.  Stood here today, I think we can all agree that Eleri was all of those things and so much more.  
 
Eleri loved the arts. For as long as we can remember she loved singing, dancing, drawing and had wanted to learn how to play the piano. She wasn’t a fan of reading or maths but was fascinated by all things science. She very much enjoyed ballet and especially loved the pretty leotards and skirts. Now as we all know ballet is a very serious and disciplined art form – something which Eleri wasn’t quite on board with.  At her first ballet show when she was 4 Eleri stole the show, not with her dancing prowess, but with her own interpretation of the moves.  As everyone else stood around in a circle holding their skirts out beautifully whilst doing their plie, Eleri proceeded to squat up and down whilst pulling her skirt over her head and making faces at the audience. It was a joy for all to see. 
 
Eleri had a flare for the dramatic.  She was part of Musical Mania and we were so so proud when she was chosen to play ‘Alice’ in their end of year play.  She was brilliant.  Not only did she remember all her own lines and act her little socks off, she could also be seen mouthing the words for all the other parts too. Eleri was an extremely active and busy little girl.  If she wasn’t doing handstands, cartwheels or the splits, she would be swinging on monkey bars, climbing to the top of a climbing frame, swinging a swing to its highest point, speeding on her scooter or bike and bouncing as high as she could go on a trampoline.  She had no fear.  She unapologetically lived her life to the extreme and as a bystander you had no other option but to get swept up in her enthusiasm.  Even after breaking her leg and having a spacer where her femur was, Eleri still tried to persuade me to push her down a grassy hill because it would be ‘fun’.  She loved to run down the garden and jump into the paddling pool inventing different moves, our personal favourite being the ‘slow motion’ belly flop.   She also loved gymnastics; in fact, I think we could go as far as to say that it was her favourite of all the activities she did.  She always wanted to improve and, most importantly to her, win something at her club championships.  She worked and worked at her routine and when the championships came around, she got exactly what she wanted.  She came first on the floor,  third on the vault and second overall.  She was utterly thrilled.  It was, in her eyes, her greatest achievements.  We couldn’t have been any prouder of her. 
 
When mobility became an issue for Eleri, she was so sad that she couldn’t live her life as she had previously.  However, in true Eleri style she embraced new activities and took them up with the commitment and fervour that she had applied to all her previous loves.  I was thrilled when she developed a passion for Harry Potter.  We watched all the films numerous times, listened to all the audio books, visited Harry Potter studios, went to see the Cursed Child in London, played numerous video games and secured her very own wand. This new obsession with Harry Potter fitted very well with another one of her new hobbies, Lego!  She would build and build and build until she had blisters on her fingers.  She was a master builder and woe betide anyone who went anywhere near her creations. There were many times we were forced in intervene as she pursued her brother fully intending to do him harm because he had crossed into the ‘Sistar System’ and dared to touch what was not his. The last of her great loves was Roblox, particularly Royal High.  I would like to say that we knew lots about it, but in reality, we have no real idea what it was about, but we do know that it kept her happy when things became very difficult for her.  We are grateful for that. 
 
Eleri loved people. She loved playing with her friends and making new ones.  She loved to laugh and joke, especially with Tiggy and Izzy. The three of them together were like a force of nature that no man, woman or child could contain.   Eleri loved to have fun with her friends, even if sometimes she helped them push themselves to the limits of ‘good behaviour’. Even in a wheelchair she encouraged Izzy to push her so fast that she toppled out.  One parent reminded me recently of a time when she was playing on the swings with her daughter whist singing the entirely age appropriate ‘Baby’s Got Back’. For those of you that don’t know it goes ‘I like big butts and I cannot lie…’.  She was all about the jokes.  She liked to play pranks – look out for the picture of her pretending to put her finger in Bethan’s bum whilst cackling hysterically. She was also fond of a telling a joke and making them up.    One of her favourites was “Why are pirates called pirates? Because they arrrrrrrrrrrrh”.
 
We cannot forget how much she cared for her family.  Even when she was threatening him with his life, she loved her brother dearly.  Yes, she sighed woefully when we made it clear that crutches were not to be used as a weapon and that running Owen over with her wheelchair was not a viable solution to dealing with his annoying habits. However, every time Owen took one of his little wanders away from us, she would always be the first to worry and immediately convene a search party with operations being controlled from Eleri HQ.  We would regularly catch them playing together or plotting some sort of coup against us. Owen idolised his big sister and she adored him, as a baby, when he couldn’t move or speak.   She was jubilant at becoming a big sister for the second time and cried many happy tears when she knew we were going to have another girl.  She wasn’t shy on giving us her choice of names, although I can safely say that we very firmly rejected Britney.
 
So, in answer to the question ‘How do we define Eleri?’, to me it is obvious.  Eleri epitomised life, love and laughter.  She was full of joy.  With her huge Hooper grin, she would brighten up any room.  She brought pure happiness to our lives.  We are so lucky to have been chosen to be her parents. We feel privileged to have had her for 8 years – they have been some of the best of our lives.  She enriched our life in a way that only a child can.  We are filled with such sadness and grief because she has been taken away. But to feel so much pain means that we have felt true unconditional love.  You cannot have darkness without knowing the light.  To have such a hole at the centre of your being means that we have known love so deep that it can never be forgotten.   We are melancholic now,  but in the future her memory will shine through the despair and guide us forward. She would not want to be remembered with sadness; in fact, we can guarantee that she would be screaming at us to ‘stop crying all the time’.  She would want to be in people’s thoughts, she would want to be talked about.  Don’t feel afraid to bring her up in your conversations with us or anyone else.  She existed, she was here, and she was wonderful.  She was so loved that she can never be forgotten. It seems only right that we finish with the wise words of the mighty Albus Dumbledore  “Do not pity the dead, Harry.  Pity the living and, above all, those who live without love…to have been loved so deeply, even though the person who loved us is gone, will give us some protection forever.”
 

4 thoughts on “Requiem for Eleri

  1. There are no words I can say to you all as a family. I know you’ve been to hell through the journey- but nothing compares to life without her- your daughter looked such a beautiful little girl..Having lost my boy Daniel to osteosarcama 5 years ago- (he was 16 diagnosed and 18 when he left). I now spend my time fundraising for osteosarcama – I’ve learnt through the years that my anger is purely at cancer – so has his mum, I must fight it. The only way to fight this horrendous disease is with science, which requires money. It is a battle everyday – but I refuse to let his death be for nothing. Fundraising has been my way of coping. The dark days I try to go to all those happy memories- our children having giving us. They are ours and ours alone-no one can take them.
    I’m sending all the love in the World and if I can help in any way please feel free to contact me.
    My name is Caroline Bridle -(Daniel’s story is on BCRT) We’re waiting for his page to be updated- The month of September we raised an extra over £11.000.
    I’m in the middle of organised a concert of celebration for next September at Folly farm Theatre. (I like to spend September fundraising, as its his birthday.)
    My number is 07496043031
    Much love to you all.xxxx

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  2. Thank you Caroline. We have decided to do something very similar. We have set up a charity to provide mental health support for families in our position. It just doesn’t seem right that there still isn’t a huge amount of support for families. It’s helping us get through. I’m hoping that in 5 years I will be doing as well as you x

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    1. Well done on going in that direction- because it is certainly a massive hit on our mental health/well being.
      Since I lost Daniel, I’ve been diagnosed with fnd ( functional neurological disorder) I now suffer with- seizures, paralyais, stroke symtoms, dystonia and much more- My signals in brain have gone to pot! But I keep going like you said in your post -you must.
      You are very much like us ref sharing our childrens life, we wanted people to know there was so much more than cancer!
      I wish you all so much strength and Love
      Caroline xxxx

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  3. Fresh tears while reading, some for your loss, but also while smiling at her sassy, wicked personality. Love to to all xx

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