In three days we mark the 14th anniversary of my step-son Bobby's death from cancer only 12 days after his 17th birthday. I was privileged to be able to spend almost every single day with him during his illness. I had first met him at only 4 months old. He said he never knew a life without me. My life would not have been the same without him.
He once commented to his father and I that he felt like the three of us had cancer, not just him as he never felt alone when we were there. His father and I made sure that Bobby was our priority. Nothing else was more important ever. It was the right decision. We only had 9 months from diagnosis to death.
When Bobby was in hospital during his multiple surgeries and chemotherapies he always had one of us with him. On occasion he would get another visitor and we would leave to have what was often a much needed break, only to get a phone call from him minutes later to say 'I got rid of them, when are you coming back?" We never said no.
He called me his shield on more than one occasion, asking me to tell his girlfriend that I wouldn't let him go on the grape diet, because he didn't want to and he didn't want to tell her. I had to field phone calls and visitors. On the rare occasion he allowed other visitors, I had to spend up to an hour removing any sign of illness or care giving from his room and bandage his chest in such a way that his picc line could not be discerned through his clothing.
He would demand that only I could make his Nutella toast because I made sure it all went to the edges, but only his dad could make his bowls of ice cream. He had a bell to call us and sometimes he would ring it and I would run to his room and he would be laughing because he'd thought of a funny joke. Many times it was because he was vomiting, and only I knew how to sit beside him, one hand on his back and just be a silent presence. During one of these times there was an advertisement on the television for peppermint choc chip ice cream. As I helped clean him up he asked "Can you buy me some of that.. I want to see if it tastes the same on the way back up". He was a funny boy.
14 years on it is still hard. My husband still grieves the loss in very profound ways. It changed all of our lives.
The moment by moment decisions we made to spend our time with Bobby make me ponder the sacrifices of such moments with our loved ones during this pandemic. When we know the importance of each speck of time, how can it be right that many will spend their remaining time so alone?
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