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.
there will be some respite this coming week from OPC (Other People’s Children). For people who haven’t encountered OPC in a hospital, imagine the most precocious, insistent, nosey, slightly unwashed looking, is there something crawling in their hair kind of child who has a habit of grabbing whatever your child’s favourite toy is and skipping merrily out of the room with a sweet smile on their face. Of course, selfishly the OPC serves a great purpose when your other children are around as it’s an instant friend for them to disappear into the playroom with. However the OPC doesn’t limit their presence to convenient hours in which your children are present and wanting to be amused, they want to be your best friend too. The OPC thinks you want nothing more than their company, even if your door is shut and you’ve wedged a chair behind it.
We had to call the family and ask them to come and say their goodbyes. I won’t go into how it felt to be told that or how it feels now to write about it. It’s still too raw. I remember screaming though.