Being in a hospital waiting room is like being stuck at an airport waiting for a delayed plane, although without the promise of a holiday at the end of it. Dominic and I usually sit and while away the time staring at a small screen, me on Facebook him on the DSi. We're generally happy
They say that life changing events change you for the better. But nothing healthy or good has emerged from coming so close to losing Dominic. It has broken me and scarred me. It just made me so very sad, so very scared and so very lonely. But finding my way out and learning to accept that I could never have my ignorance back, that once you have felt the pain of saying goodbye you can never win back the peace that other parents seem to take for granted all around you has become part of my journey. It’s something that has woven itself into the way I see the world, see my family and ultimately see myself. It is part of everything, so it is undoubtedly part of my normal daily life.
The Great Ormond Street Hospital Children’s Charity approached me at the beginning of the year asking me to write something for them. As Mother’s Day was approaching, I decided to write something for the mothers keeping vigil at their child’s bedside in the hospital. It was written a year after Dominic’s 8 month long admission
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.