Ben was always one of those babies who never complained, never wanted for anything, and loved his comforters, loved cuddles and spending time with his brother Jake.  Ben brought to our lives lessons too hard for some adults to comprehend; there is always enough to share, you choose to smile despite how much it hurts and you don’t give up the fight until the last second.  We had noticed after Ben was born, one pupil was a different size than the other and it never changed.  I discussed it at my regular maternal and child health nurse visits, with the general practitioner and then the pediatrician.  Even when his eyelid began drooping, each professional told us it was nothing to be concerned about "it is very common to have a lazy eye," and no further investigations were conducted.  There is no reason how as parents we instinctively know things, maybe it’s the "cord thing" as I tell my children, yet I just knew it wasn't a lazy eye.  When Ben was 16 months old the eyelid closed.  We were on holiday in Victoria and I went straight to the GP, within 10 minutes a pediatrician was telephoned & came to the surgery, that afternoon we were in the children's hospital; the next day we were told our son had a brain tumor.

Initially we were told Ben may have 3 months in which to fight the cancer.  I just thanked the doctors and told them no one knows that much.  Ben named his central line 'Fred' and they became best of friends through transfusions from the neutropenia, through months and months of chemotherapy and when there seemed no more options, we trialed stereotactic radiation on our brave little nearly 3 year old boy.  A team of 18 specialists and two hospitals worked around the clock to conduct this procedure and when Ben wasn't asleep he was smiling.  When his movement stopped down one side, he used his fast red walking frame to get about and then when he couldn't drag his heavy body, from his massive appetite (a result of the steroids), he used his fast red wheelchair. Nothing stopped Ben from being himself.  Everyone who knew Ben thought he had an old soul, with an air of wisdom of a life before, bringing with him messages of courage, strength, endurance, resilience, hope and love.

Right up until the last week before Ben died, he did not complain.  Ben loved Thomas the Tank Engine, his Little Tikes lawn mower, Winnie the Pooh toys and movies and never went anywhere without a dummy (pacifier) in his mouth or one in each hand (a spare just in case). He had the most infectious laugh that even the most miserable person couldn't avoid smiling when they heard it. When I was told the tumor had grown across the fourth ventricle and the pressure would have been causing Ben pain, you know I still to this day do not know how he kept smiling.  Ben went into and out of a coma on the evening of the 11th of December 1998 at home, he died on the morning of December 12th, not before we found his lost Winnie the Pooh slipper only a minute before.

Ben is my constant inspiration for life.  I keep a picture of him giving me a kiss, oh yes he always loved kisses :), next to my bed, so every morning I get up and keep going and not let anything stop me from living a full life. Ben is my hero.  Ben painted rainbows and butterflies for people, he would give up his last lollypop if there was only one remaining and a friend was going without, his capacity to be so giving was beyond his years.  Ben's courage is a lifelong strength for me.  I remember his smile, our cuddles and I can endure anything life throws at me.  There has been a lot since Ben's death and I am sometimes asked how do I keep going and Ben is the reason why.  If such a small boy, a gift to us can be so brave and so strong and still smile through all the hurt, then so will I.

Written by Glenda McMillan, Ben’s Mom
07/10