All parents worry about their children I guess. Worries for their future, worries about something bad happening to them. I think there is a special kind of worrying though that’s reserved just for parents of children with disabilities. I call it The Fear. It feels like it needs capital letters. Some times The Fear creeps up on you during the dark hours and leaves you hamstering in bed, your mind turning over and over with every kind of possible worry;
but worse is when The Fear gets you in daylight hours, when you’re out in public and not expecting The Fear to be lurking round the next corner, ready to pounce.
My son Jacob is a SWAN , this stands for Syndrome Without a Name, he has a complex disability but no underlying cause has been found. I used to think that there was a special kind of worrying associated with having a child with no diagnosis. No diagnosis meant no idea what to expect, no monitoring and check ups could take place, any kind of problem would just “happen”. Then I realised through chatting to another parent whose child has a chromosome disorder that she too knew The Fear. They had a label, but it meant that they also had a whole list of things that could possibly occur; but they didn’t know if, or when, they might. She described the day that she received a leaflet about her child’s diagnosis, it wasn’t long after she had given birth, and this leaflet gave an extensive list of possible scenarios with the proviso that some children are mildly affected and some seriously. Not knowing where your child might figure on this spectrum she likened it to arriving in the post natal ward and being hand a leaflet giving the statistical probability of your child becoming a drug addict, a criminal or being involved in a serious accident at some point in their later life. A whole list of things for The Fear to feed on.
This wasn’t the post I was planning on writing, but today The Fear got me. Not my normal Fear either. My normal Fear lurks in the dark hours when I’m trying to sleep. It is then that I lie awake and worry about Jacob’s future. Will he ever speak? How much independence will he be able to have? And then, guiltily, will I ever have a life that doesn’t involve parenting a toddler?
We’re lucky, with all Jacob’s complexity so far he has been in pretty good health and through getting to know so many other parents of children with disabilities I know that this is something to be immensely grateful for. So I was not expecting to arrive at his nursery today and be told that Jacob had experienced what they described as an absence. A significant period of time in which they had been unable to gain his attention, in which he had stared into space and then suddenly snapped out of it, rubbing his eyes. Of course, they had to tell me, I understand that; but how can one little sentence turn an ordinary day into one where your heart simultaneously rises into your mouth and your stomach sinks to the bottom of your feet? I left with Jacob and outside the door, it was waiting for me. The Fear. I had to stop, I couldn’t move or speak and my throat felt as if it was closing up, tears came and I thought “Oh God, I’m crying outside a school, how lame.” but I couldn’t stop myself. Even typing now I find it hard to see what I’m writing. It was That Fear. The big one. The one that whispers to your mind “Something dreadful is going to happen to your baby and you’re powerless. You can’t keep him safe.”
Since then, I’ve watched him even more like a hawk than normal. He seems fine and I haven’t noticed him absent even for a couple of seconds. So I’m hoping and crossing everything that it doesn’t happen again. Hoping and trying to ignore the new Big Fear.