At a recent admission to Great Ormond Street Hospital (GOSH) I sat in our small side room gazing through the dim light at blue and red lines dancing across a large screen. My son had been admitted for a prolonged EEG, to investigate his epilepsy.
Having pressed a button to indicate he was now sleeping, I looked upon his beautiful, soft features as his head rested on the pillow. His gentle appearance showed he was fully captivated by his slumber as his fingers lay uncharacteristically open and relaxed. Gauze and webbing encircled his head, holding more than twenty EEG leads securely on his scalp as they read his brain’s impulses.
Sitting in the dark, I listened to passing feet echoing along the corridor and distant monitors bleeping, while the strong bleach hospital smell filled my nostrils. The cacophony stimulated my senses and transported me back to the first time I heard the term ‘sleeping trace’. On that occasion it referred to the cardiac tracing of my unborn baby rather than the electric impulses of a brain. Having felt no movement through the night before my due date I had gone to the hospital for reassurance.
Once the Cardiotocography (CTG) monitor was attached to my rotund belly, the sound of my baby’s heart beat comforted me as the midwife described the lines as showing a sleeping trace . Time passed and the readings remained the same without me feeling my baby move. Before long the term ‘sleeping trace’ began to be spoken like a four letter word, by that evening my son had been delivered and was strapped to his first of many monitors, struggling for his life.
Eight years later in our darkened hospital room I recalled so much that had happened in the intervening years of his life. There have been many times when a machine was not necessary to tell me that his life hung in the balance. I had twice watched my husband give mouth to mouth resuscitation after a seizure stopped our son breathing, and whilst on a family holiday I had heard the broken English of French doctors explaining that a seizure lasting two hours now required our son to be airlifted to intensive care. So many memories of watching his growing body writhe and shake in various Accident and Emergency departments piled up on top of each other, as doctors struggled to stop his vicious and complex seizures. Each event is vividly imprinted on my mind, potent and palpable, like a recurring nightmare.
Around the room in GOSH expensive machines and cameras monitored every move we made. A night here was probably more expensive than a night at the nearby Bloomsbury Hotel, yet this didn’t feel like luxury. As I prepared to sleep in a made-up bed next to my son, I was very grateful for the luxury of my most traumatic memories being securely tucked away, deep in my mind. With over three years since our last hospitalised seizure I was no longer daily walking the epilepsy tightrope, tense and waiting to be toppled. However, both my head and heart know there is only a hairsbreadth between us and another prolonged, life threatening seizure.
This reality, this understanding of life and its fragility, has fuelled in me a desire to hold today as cherished and invaluable. There have been days, however, when I haven’t been able to appreciate this truth. My vision has been too distorted by tears, my muscles too fatigued and my perspective too warped with pain, draining me both emotionally and physically.
One thing I now know is that when I cannot change what happens around me, I am changed by what happens around me. When life is a struggle change is inevitable; it’s just a matter of whether it’s the circumstances or me.
Wherever you lay your head tonight I encourage you to stop and try to see some of the good around you and treasure it. The spring flowers, the sun in the sky, your loved ones, or your memories of them; no matter how short. And if you find yourself in one of those days, or weeks, when crying is the only option, let it be so; “Be kind to yourself,” as my wonderful mum has often said to me. I promise to pray for you.
I will pray that in the darkness of your day you see even the smallest glimmer of hope, a chink of light breaking through the thick black cloak around you. Whether it’s the thoughtful words of a kind professional, an understanding friend or a few extra minutes sleep, I hope you will see more peace in today and more hope in tomorrow.
Late that night in GOSH I kissed my son’s cheek and touched his soft skin before succumbing to sleep myself. I knew the morning would bring a rising sun to reveal another day. Another day full of potential pain and joy, or most likely, a mundane day brimming with the possibility of transformation.
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