At the risk of being pelted with chocolate Hobnobs, I'm going to break my own cardinal rule of militant Christmas denial until the calendar has been officially flipped over and I have to come face to face with the month of December. Normally, when out among the human race, intermittently freezing and sweltering as I
I am the proud mother of a disabled child. But I am also the proud mother of two able-bodied children (or whatever generally accepted pc definition you wish to categorise them as). One is serious and smart and capable of an extraordinary ability to love and an even more extraordinary ability to survive on very little sleep. The other skips and pirouettes through life managing to juggle frivolity with a deep and sensitive understanding of other people’s emotional complexities, and just happens to have the fartiest bottom of anyone I have ever met. These two are the unsung heroes, the forgotten siblings in the special needs world.
Nothing marks the approach of the glorious school-run-free summer holidays than the school sports day. It’s something that has enormous significance for the children, largely due to the practices that start weeks ahead of the event which heightens the anticipation and gives them a taste for the greatness and glory that might just be theirs.
When my beautiful Lilia was three years old, and already wise beyond her years, she and Elliot travelled on the train to London with her Granny and Opa to come and say goodbye to her baby brother who was not expected to make it through another night. I stood in the toilet cubicle with her outside intensive care and, as it had been my only opportunity to talk to her by myself, we discussed what it meant to be dead, what forever meant and why it was important to say a proper good bye to her little brother. Of course Lilia, wiser than us all, didn’t see her little brother on the table. She saw a small swollen body, connected to countless tubes and machines that pinged and beeped and made a small chest rise and fall awkwardly. She saw no need to say good bye to the body that did not look like her brother, sound like her brother or smell like her brother. She found it difficult to even contemplate that her beautiful, doe-eyed Dominic was somehow trapped inside this swollen, battered body that was giving up the fight. I wonder if she looked at me with the same curious large eyes wondering where her mother was too, as I may have looked, sounded and smelt right, but I wasn’t the one calmly talking about the finality of death and the importance of saying goodbye, I was trapped inside in my own way, just like Dominic. My body going through the motions whilst inside a growing black hole raged threatening to lift my last finger off the ledge.
I must have walked past that answer phone machine countless times in the 4 or so hours it took me to pluck up the courage to return the school’s phone call. I never had to listen to the actual message as I was stood by the machine as it clicked into action and heard the patient voice at the end of the phone explain that they had received my email, thank you, and that they thought we should probably discuss it. Gulp. […]