Reading about Ivan has reminded me of how lucky I was to meet you. It's been five years now and I know your Mum still misses you every moment of every day. I wasn't privileged enough to meet you until near the end of your life. A life which touched any it came into contact with, lighting them with love and deepening with understanding.
You were a beautiful, healthy baby boy, born with no sign of the incredible life you'd come to lead. When you were six weeks old you fell ill. What initially appeared to be the kind of childhood illness my generation has forgotten ever existed, rapidly became showed itself to be more serious. There was deep snow that year, and despite increasingly frantic phone calls from your mother the doctor refused to come out to you, instead he chastised her for being an over anxious new mum. Even now, when she's having a bad day your Mum blames herself for not having dug through the drifted snow to get to the car and take you to hospital herself. You were seizing by then though, and vomiting so violently and constantly she fought for hours to keep you upright and breathing. Just you, her and your three year old brother.
Eventually when your grandmother phoned the doctors they agreed to send someone out. By then you were so very ill the roads were closed and a police escort provided to take you to a specialist children's hospital. There they battled and saved your life but hours without sufficient oxygen permanently damaged your brain. No-one complained back then so the doctor who'd refused to see you was quietly sent away and nothing more ever said.
After that life was irrevocably changed. Benefits and care packages were almost unheard of back then, so your Mum and Dad just got on with it. Even when both your grandparents fell ill and your Mum had to nurse them. Even when your Dad got cancer. Even when your Mum found she had cancer too. At the same time as your Dad. They just got through it. They'd learned from an expert.
When I met you you were already dying. In terrible pain you endured thousands of medical procedures throughout your life. No matter how painful the procedure you had to go through, without fail you would tell the doctors and nurses you were sorry. And ask for a kiss to make it better. You always got your kisses.
You changed the world Sam. Your Mum was so appalled by the way the medical profession treated people with intellectual disabilities that she somehow found the energy to force through changes. You were far too busy making people laugh to worry about that though, you had a chortle so infectious it would catch people outdoors and complete strangers would find themselves joining in. Many a Christmas dinner was had with an extra place laid for Mr Blobby, you so loved big, bright inflatable toys. There was even a blow up alien on your coffin. The chapel was too small for everyone to get inside so people spilled out the doors, filling the air with laughter as we all sang 'Always look on the bright side of life'
You did exactly that. You'd be nearly 50 now and none of us who met you will ever forget that no matter what you had to put up with kisses always made it better.
Ivan Cameron. 08/04/2002-25/02/2009
I hope the world will always be able to remember you as the little boy who helped improve the lives of all disabled people.
A 5 year old girl with cerebral palsy is not entitled to an NHS powerwheelchair
"Nothing ever happens, nothing happens at all.
The needle returns to the start of the song and we all sing along like before"
Del Amitri, Nothing ever happens
"One armed presenter is scaring children, parents tell the BBC."
"Out of touch, out of reach yeah
You could try to get closer to me"
Def Leppard, Hysteria
It could be you. And trust me...it's worse than he says, but if you read here then you already know that!
He was smiling as he came up behind me stopped in the middle of an aisle where I was temporarily distracted from running over people's feet and crashing into shelves by the B&Q employee directing me outside to the building yard. He started to laugh and told me I had the face to get away with anything. I've heard that kind of thing before, but it seems age confers a certain freedom to make such statements to much younger women in a friendly rather than sleazy way. All I could do was laugh. And hit a shelving unit with the mobility scooter I'd been lucky enough to stealwait for another customer to return. It was fun...but frankly I've had more powerful vibrators. I didn't share that insight at the time though.
After a few more pleasantries the gentleman asked me what I was shopping for and if he could assist me in any way. I was after a paving slab of some sort to use as a hearthstone for the fire I've recently picked up 2nd hand on ebay so initially I demurred as moving paving stones are heavy things and he wasn't the youngest of men. He insisted though and I was ever so grateful when we got outside to the building yard and found it barren of employees.
Chatting about what I wanted the stone for and what he was purchasing in B&Q as we looked at stones I felt I should make a choice quickly and let him get on with his day. He had time to spare though and insisted on carefully showing me each paving stone so that I could make my choice, and when I chose the particular type of stone he meticulously sorted through them all to make sure I had one that was both beautiful and with the least faults.
Finally I made a choice I was happy with and the gentleman asked how I was going to get it to the check out. He found a flatbed trolley nearby and insisted on lifting the stone for me and helping me to the checkout with it. We chatted companionably as we headed back into the store, and passing the cafe I offered to buy him a coffee to thank him for all his help. He refused, insisting that he was both too old and too old fashioned to ever let a young lady buy him a drink but I could tell by the twinkle in his eye that he was pleased to have been asked.
Once at the checkout, despite all the time we spent selecting the most appropriate piece of slate the sales assistant noticed a chip and took 20% off the price, unfortunately the offer didn't extend to the gentleman's purchases...though I did ask!
Concerned about leaving me with the heavy stone the man continued to help and insisted on lifting it safely into my car for me, and extracting a promise that I wouldn't even consider trying to lift it out at the other end myself. He took time to position it safely on the back seat, the boot being full of wheelchair, and after my telling him just how much I appreciated his help he took his purchases to his car.
I didn't get his name, but he made my day. I think he was lonely so I hope I made his too. Oh, and I've kept my promise, so, for now the slate is still in the back of my car.
