“I thought he died because he missed me”

Writer Rose Russo shares this incredibly moving story of her baby brother’s short life:

“Last month marked the twentieth anniversary of my younger brother’s death. When I put it in writing it seems like such a long time ago, but it only feels like yesterday. I still remember his smile, his laugh and his curly blonde hair. In many ways I was lucky to share the 13 months that he was part of our lives. I could have easily been his younger sister and missed out on teaching him how to clap, or running down the driveway with him in his stroller; cackling. I remember his cherub like face beaming back at me wanting to go again and again. This was just what he was like – fearless. Michael was born with Spina-Bifida. I was never sure what this meant but I knew he couldn’t walk but I already had grand plans of how I would spin him around school in his wheelchair as his proud older sister. Nothing would be too hard for us because I knew we were a team.

Every year at this time I always think what it would be like to have him around. I wonder how he would dress, what he would smell like and what his favourite food would be. In many ways, Michael is part of my everyday life and I have always felt that we have moved through life together as great friends. December 2010 marked his 21^st birthday and I was saddened that he wasn’t here to celebrate it. It just isn’t fair that Michael wasn’t able to grow up in our family. During his time at Allowah which is a hospital which cares for children and young people up to the age of 18 with physical and intellectual disabilities, I always wished that one day I would wake up and he wouldn’t be in any pain. I remember his little feet, always turned inwards and strapped up to help support his spine. I wondered as a four-year-old whether this was uncomfortable for him. I wondered whether he would ever be able to wear pretty shoes, like me. Not that he would wear pretty shoes as a boy, but any shoes.

When a younger sibling is born, especially when the older child has been the only child for four years you’d expect some jealously. But the memory I have of my brother being born is pure excitement. I treasure a photo of both of us in hospital, on my 4^th birthday (he was born a day before my birthday, four years later) with a beaming smile and a badge stating “I am 4 today” just in case anyone forgot! I don’t remember thinking he was “sick” or the moment I realised he had a disability. He was just my brother and I was besotted with him. My extended family still speak of him with such delight and tell me stories and memories of him that I was too young to remember. What I do remember was his beautiful blue eyes that shone back at you with such love each time you looked at him. Mum would give him baths in a little tub in the bedroom and he was always so playful, never one to cry about how limited his life was. I actually don’t remember him crying at all, ever.

During my first week in Kindergarten he passed away. Looking back I remember feeling guilty that maybe he died because he missed me and I wasn’t around as much because I had to start school. I don’t remember being told of his death and I don’t remember his funeral, one of the advantages of being young I guess and being able to wipe these bad experiences from my memory. I wanted to be the ‘rock’ for my parents as their marriage was breaking down at the time of Michael’s death. I remember Dad sleeping in the spare room which was closer to my room and I felt so lucky. Dad loved me that’s why he slept there to keep an eye on me. I didn’t understand the true meaning of separate bedrooms. When Dad moved out it left a gaping hole in my life – the two most important men in my life were now gone. But, as time passed I started to enjoy packing my bags each weekend and going to his place – I had my own independent relationships with my parents and I couldn’t imagine my life any other way.

In the many years that followed Michael’s death I drew strength from his courage and how much he fought to be part of our lives. In his short life he changed my view of the world and I realised that nothing lasts forever. It was a powerful lesson to learn early on in my life but I understood the true meaning of independence. We may come into this world and leave; alone, but the love that bounds us during the beginning and the end is forever engraved in our hearts. I am truly grateful to my brother for the gifts he has given me and I pinch myself that I was lucky enough to hold his hand, and to be called his sister.

Click here to see Spina-Bifida explained

To  volunteer, by reading to the children and taking them for walks around the hospital’s grounds click here “