What needs to be said first and foremost about Mikey is he was a real handful. Born on the 4th May 2002 he was cheeky, rude funny he swore and he smiled like Eddie Murphy…..Big!!! There was always that worry about what he was likely to say because he said exactly what he saw.
The result often being me with my head in my hands and apologising......... ALOT.
Say it as you see it...........
Such an instance of knowing we were in trouble was in Great Ormond street hospital and we were assigned a nurse for that day who was lovely but for want of a better word cross eyed. I shuddered at what he was going to say, I prayed for a miracle and that by the grace of someone, anyone, he wouldn’t notice. He did. My memory of his exact words has not faded such was my absolute embarrassment. He stood stock still in his Ben 10 pyjamas and huge car slippers, next to the hospital bed waiting to jump up and play his play station 3, his little face looked puzzled to begin with but he soon regained his composure pulled his shoulders back and said ‘alright where you looking lady? Coz to be honest I’m confused?’ He then proceeded to request she stand still as he darted from one place to another within the little room, on the bed, my little bed, the chair stopping each time to perform the Spiderman web shooting fingers and ask if she could ‘see me here?’
I had my apology ready but this nurse had obviously become accustomed to this and actually joined in whole heartedly, she was particularly impressed when Mikey informed her she clearly had super powers.
Alongside the fantastic nurses, I found the poor ladies wearing burkhas were so understanding when he made it his mission to find evidence they were in fact ninjas. Although I can understand his inability to stay silent on things like this as during his various stages of treatment he had been bald, in a wheelchair, shedding skin, and had a feeding tube up his nose and more often than not people would stare and he would notice and he often asked me ‘why do people stare at me and not talk to me?’ so I think he felt he’d be subjecting someone else to that feeling of unease if he wasn’t up front and didn’t ask. So he did……a lot in the biggest ‘I’m the boss’ voice. And that is exactly what he was. Since he passed away many people had said to me that once you met Mikey he owned you.
He could get what he wanted from anyone without tantrums or manipulation that was him and he held that power even before he was diagnosed with neuroblastoma in 2007.
Children have mindfulness DOWN! I didn't know it at the time but when Mikey wanted to play he would say he was just being and again with all the blessings he left me I realised this was a lesson i wanted others to know. That happiness is indeed just being. Children leave their ego at the door when they play they care not what others think of them they are just emersed in the moment and that is essentially what mindfulness is.
Mikey adored all things superhero, he had a particular soft spot for Spiderman. His funeral was a sea of red and blue outfits and the ‘toybox’ we laid him in to meet his bliss was a 3D work of art covered in Spiderman graphics. I truly hope he loved it. Mikey was 5 when he was diagnosed and he didn’t care. I'm not blind to the fact at his age the association of the word ‘cancer’ and death hadn’t been formed but he really didn’t care in fact what he experienced was all of his family together and new toys kept turning up! Whilst I had to be coaxed out from under a table as the diagnosis was confirmed he ran around the corridors of Great Ormond Street Hospital brandishing a light sabre defying anyone who thought he should be sick and in bed.
Yes, there were times when he was afraid and in pain but I knew we supported him the very best way we knew how.We never left him, there were times we had to fight for him and our love for him went beyond ferocious.
What has he done now?
Mikey’s father and I had split up when Mikey was two. He was in nursery at this time and that was when we realised he was going to be a handful. Complaints about him being really naughty and feisty were daily occurrences and this carried on when he started school. One of my favourite stories is about his teacher taking me to one side with regards to his behaviour. She was stifling a laugh when she said ‘Miss Cullen, Mikey is adorable he really is but can we impress on him that my name is Miss Crawley not sweetheart? And definitely not babe?’ When we think about our children we often liken them to popular characters and the only one that I could possibly liken this young man to is Del Boy from Only Fools and Horses. He was that cheeky, naughty never quite playing it straight character that people fell in love with.
As he grew and after diagnosis he obviously spent less and less time with children and he often felt more comfortable with adults. I remember him feeling particularly poorly and a doctor standing over him and saying very sweetly ‘now then Mikey are we having a pain in our tum – tum’
Mikey answered ‘yes we are but I have cancer, I am not two so do not speak to me like I’m a baby’ it was after this the consultant insisted on having a very active role in Mikey’s treatment, often referring to him as Wolverine due to his ability to heal so quickly.
Mikey felt it when I was struggling which I was most of the time. I remember very clearly, him looking at me and holding my face in his hands, something he often did when he gave someone a kiss, and saying ‘whatever happens Mummy I will be ok, Don’t worry.’ Anyone who knew Mikey knew his main concern was always me. My friends often commented on his need to make me laugh wether it was through his mimicking scenes from films, actions and all or deciding the best place to pass wind was on my head. I was his utterly and he knew it. I knew him inside and out, literally. When you spend weeks, months, years in little hospital rooms they become you, your life your best friend, Mikey was mine.
The time I wasn't ready.
The major problems I have when speaking is my inability to recall these things without crying. At the same time I could ramble on about him forever. No anecdotes could tell you how amazing he was although two particular stories will help you see why happiness should be his legacy. The first one is swift. When we were first told Mikey was going to die in July 2010 he defied all the odds by becoming well, in fact he became as close to normal as I could possibly imagine him, ever being, he even started karate every week. Doctors couldn’t explain it and started to wonder if maybe he would be that miracle nothing would explain. However initially in that July there was one night he was in a lot of pain and as I sat with him I remember my parents were with me at my home I convinced myself he would die that night. I was beside myself, utterly useless. His breathing was irregular and he looked like someone very close to death, as my previous experience as an operating department practitioner had taught me.
Terror was in every cell of my being I knew I wasn’t ready to let him go, had he died that night I know I would have followed him. Mikey survived that night and went on to be well for many months. The night of Mikeys death I had my hands on his little legs as his dad held him with his step mum. I felt at peace in the minuetes before and after. I managed to say goodbye and I felt the unspoken emotion that grief often holds, relief. Relief for me our families but mostly for him. I believe he knew I was ready to let him go and I knew I would live on. Yes I would get to the point I felt I couldn’t cope, but at that moment I could cope because he was out of pain. Yes once hed gone I sank to my knees in my garden and screamed for my baby but I knew this had been his choice. When we had been told before he was dying, we sat we waited, but he knew we weren’t ready. This leads me to the incredible story about my son and his choice.
Mikeys choice
Mikey loved our little house, as much as he also adored being at his dad's house with all the children at my house he had the chance to play on his X-box in peace. The day before he died he was supposed to go to his Dads but he didn’t want to. He did ask for his step mum Gina who we adored, he also asked if she could stay. I had often stayed at Gina’s house during Mikey’s poorly times but she had never stopped at mine so this was organised. Mikey was struggling a little with pain and seemed abit delirious so we got nurses out and they checked on him every half an hour often popping out for supplies. Noone at any point suggested he was nearing the end. We didn’t realise although I think Gina was starting to get suspicious. I suppose we didn’t want to think that way. Besides he had been so much worse than he was this night. Mikey started to insist on his dad being there so we contacted him to come which he did. He wasn’t making much sense at this point he was full of morphine and hallucinating but the things he did say evoke absolute awe in me now. His bravery and dignity were incredible as he knew what was going to happen when we didn’t have a clue.vWhilst I had always given Mikey every thing he wanted, his Dad Nigel had always been the one with the fighting talk about how we would show the tumour who was boss. It was their ‘thing’ if you like. They would pretend to box the cancer and talk about how it was weak and Mike was strong. With this in mind what mikey said to him was a sign he knew he was dying. He apologised to his dad and again took his face in his hands and said ‘im sorry daddy I don’t want to fight anymore’ we were stunned and Nigel equally as dignified as his son told him he didn’t have to and how much he loved him. I was then with sick feeling in my stomach I started to know where we were headed. He then started to repeat over and over again to his lovely Gina ‘is my mum going to be OK is she OK?’ and somehow and I really don’t know how she did it she answered him saying ‘don’t worry boy, we will look out for her , she will eat, she will sing’. He had to be told this several times over the evening before he would rest. Again proving to me I was everything as if I needed proof.
The last thing he said to me was something I had been warned about by several nurses. Often children who are dying orchestrate their death but they will ask permission. We were alone and he was on all fours as I rubbed his back. He looked up at me and said ‘Mummy is it time to go to heaven now, is it ok?’ I know my heart stopped, it did I swear. I reran what he had said in my mind and I knew the words and the sound of Mikeys voice saying them were seared into my heart. I also wanted to remember this sentence because I knew I wanted to engrave the sound of his voice into my being, I knew I wouldn’t hear it again. I answered him in the only way I felt would give him peace.
Even though I wanted to beg him not to leave me I answered him.
‘ you know what Noodle, I think if you are ready to go and the time is right for you to go run and play like you used to it will be ok. If you want to stay and fight you know we will fight with you, but you have fought so hard for so long and so well if you want to go I will be sad for a long time but I will be so proud you are mine, and I will see you when I get there’
I still don’t know how I said that without screaming or crying but I couldn’t let him down now. In less than half an hour he was gone. Just 3 people surrounded him myself his dad and Gina. He even passed whilst the nurses were getting supplies. He knew my amazing son knew. Noone can tell me different not that they tried.
As the nurse who cared for Mikey said in the children's hospice Demelsa where they cared for his little body after he passed ‘ thing is Kelli all the things every person wants to say about their child you can say about Mikey and know it is absolutely true’ as she broke down I knew she was right.
Obviously I cannot relay this story in front of you but it does need to be heard, and this is how we start. To begin I will recite to you my favourite quote of all time. Im sure you’ve heard it but it is the mantra for my life and it is a view to living this way that I have equipped myself with the knowledge of my beliefs and built YUMMY. So open your hearts and trust because life really is to short to put off until tomorrow something that will make a real difference today.
Sing like noones listening
Love like you’ve never been hurt
Dance like noones watching
And
Live like its heaven on earth.
Mark Twain
Kelli Cullen JNR ever Mikeys Mum