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.
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.
Happy New Year! Having spent quite a fun night running around the hospital with Dominic and ending up on the roof watching the fireworks with a few doctors who could escape momentarily, it was impossible to ignore the overwhelming feeling of optimism that is unique to New Year’s Eve. That’s what marking the arrival of
******Reposted in its entirety from my original blog****** So for my beautiful baby boy it was a serene start to life. He was peaceful, happily lying in my arms as though he hadn’t even noticed that he’d been born. I remember the midwife commenting what a beautiful colour he was, and if the birth notes