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.
Yes it is devastating to hear the doctors tell you that your child has a syndrome, a disease, an illness, but, believe it or not, for some it comes as a relief after a long journey where not knowing has been far harder. A diagnosis, especially for parents who were unaware that there was a problem, can change a family’s hopes, expectations and goals in an instant. With a simple word, parents become part of a community of people who have had the same conversation with their child’s doctor. A diagnosis makes you have a connection, it gives you a reference point, a place to start. You get handed a name of a ‘thing’ to fight, hell if nothing else at least it gives you a neat summary to stick on the endless forms you have to fill in.
Home is where the heart is, or so the general consensus seems to be. In many ways I feel like I have come home now, everything has regained some kind of order, the cobwebs no longer have the larger share of the house and there has been a lot of culling of clothes and toys.
I haven't complained, once. Ok, take that sentence out of context and you would have Roger, certainly, raising his eyebrows. What I mean is, despite everything that happened, both from the dangerous to the incompetent and even stretching to the negligent while we were in Great Ormond Street, I never sat down and wrote a