It is hard a bit at the minute. I have to admit it has been hard a bit for a while.
We knew there would be twists and turns on this journey of raising Gabe, a boy that refuses to fit into any box. The endless square peg for the round hole. We’ve had so many of those days when it feels like the walls are closing in and I stop and wonder just how this became our life. Six years on, I know that we are not immune from them.
It is a strange one – the thing that has come along and pulled up the rug on us – we never saw it coming. No doctor or specialist can get to the bottom of it. There is no magic pill to take or intervention to try. All we can do is wait and see, praying that there is some leverage still in that old adage that we wheel out time and time again: that this too shall pass.
Three months now. Three months of broken sleep. Three months of screaming. Three months of persistent, unrelenting, heartbreaking self-abuse.
Nearly 100 days of watching as he wakes each night and he hits one side of his head over and over, before switching to hit the other again and again. Nearly 100 days of asking why and still finding no answers.
Is it pain or behavioural? Have you seen this before? I’ve asked this of so many – his consultant, the GP, the specialists at school, the all-knowing members of our support group. The answer is always the same: it could be pain or behavioural or both. And yes we’ve seen it lots. Reassuring and yet still sobering.
We’ve tried pain relief, given antibiotics just in case, distraction, cuddles, holding down his hands, cushioning his head, singing, dancing, begging and crying. Even Iggle Piggle (that rat) has failed in his magic. Any intervention seems to heighten and prolong whatever distress makes him seek the sensation or comfort this assault creates.
Night times are like a morbid game of musical beds. He shares a room with his brother so we bring one or the other into our room and leave the other to sleep or scream it out – depending on who needs what the most and based our current capacity to cope.
If we are lucky he’ll go to sleep, but wake later in the night; if we are lucky he’ll eventually drift back off before the dawn and we’ll get some extra hours before the day has to start. But too many times – the night it stretches endlessly ahead.
I’m trying to remain calm, to dredge up patience in the darkness when he lies beside me hurting his own head – not understanding it is destructive – knowing that if I leave him he’ll eventually curl into my back and fall into an exhausted slumber.
I’m also acutely aware of a beloved family that would swap places with me in a heartbeat – to have their own bundle of blonde boy beside them intoxicating all their senses, their slumber disturbed by more than the cold fingers of frightening grief.
This, therefore, can’t be the thing that overwhelms, that knocks us off course, that threatens to drown us. And we are not falling down that hole EVER again.
So as the world sleeps on, when I feel like I might crumble, when it feels just too unjust and helplessness heaps high, I lie still trying to pretend I’m somewhere else.
And I’ve been writing love stories in the sky.
It’s a trick of the teenage me. The one who filled notebooks of narratives, created her own characters and played out their plots like a picture house in her mind.
The one that stood spooked on the edge of her future with it all spread ahead. Facing the unknown, but with the promise of romance, new friendships and adventures there for the taking.
The one that sound tracked every stage of her life, anthems embedded in memories; that lived immersed in one story, only to put the book down and be plunged straight away into another world. The one that watched those films on loop. You know those ones from The Breakfast Club and The Notebook to Pretty in Pink and Before Sunrise.
Now in all the hours that I feed Gabe I’m revisiting some film favourites (both of us gorging on mush). I’m putting away the phone before bed and picking up my Kindle.
I’m reaching for the iPod in the depths of the night and listening to songs that speak of loves that last a thousand years; it being a little bit funny, this feeling inside; the something in the way she moves and that we can be heroes, just for one day.
So there they all are – these books, songs and films – melting into what feels like a constant perturbing bubble of emotion and they all explode in detailed technicolor in my head.
And become my own love stories in the sky.
That awed teenager, she got the racy romantic affair, she married the soul mate, she did the cool and kooky flat share, met and made some of the greatest mates and had all shapes of adventures galore.
For that reason, I’m still believing in magical endings, the fairy tale and the happy ever afters. Because if I don’t – what is there?
I’m not entirely sure if this nocturnal unfolding of fables in my mind is a gift bestowed so the chronic sleep deprivation doesn’t send me insane. Or if this is what the actual edge of madness looks like.
But I do not care as they let me box up the bitterness, frustration and fear and fling them away. They let my head be filled with loveliness, allow positivity to prosper so I can get up and be kind to my family and teach my children to live a life smothered in hope.
These stories I’m writing speak of triumph over adversity, learning to dance in the rain and that around any corner that one surprise encounter or event could change a life course. They make me believe in the dead of the night that it is all still to play for. That life is not done with me yet.
They remind me that the universe will and does knock you down, but the key is finding a way (hell any old way) of bouncing back up again.
Even if it is something utterly bonkers like…
Writing love stories in the sky.
UPDATE: After a short admission to the neurology ward for observation and tests at the amazing Birmingham Children’s Hospital we started Gabe on migraine medication. He is a changed child – sleeping, eating, smiling, being amazing all over again. Not sure of cause but all brain scans and bloods were clear. Shows we need to keep pushing for help for our children and not let medics assume it is always “behavourial”.
P.S. A book of Alison’s nocturnal natterings is available at all good book shops for 5p. And okay, soz, most of the stories do include Jamie Dornan (actually that’s just a joke – don’t panic pretend friend Amelia Warner).