I am sitting at home contemplating, whilst work has been cancelled, school has been postponed, social lives have been put on hold. I am thinking about our friends, family and neighbours who have been impacted by coronavirus in so many different ways. Like everyone else, I am humbled by all the key workers who are sustaining the NHS and enabling us to maintain a new normal within the confines of our homes.
In response to the impact of the virus I have just been added to a WhatsApp group for parents of children who have genetic conditions and so my mind wanders to all the parents who have to manage the ongoing health concerns of their children and the associated fears linked to parenting children with underlying health conditions. The parents invited to the WhatsApp group are parents of children with health disorders that preceded the silent proliferation of Cornoavirus. The care of their children must now be managed alongside the concerns and fears that Coronavirus and self-isolation have thrown at us all.
As I sit here, I feel grateful and thankful. I am feeling strangely fortunate today, for as luck would have it, Jess had major surgery in December. Given the stress and apprehension at the time, I would never have anticipated that by March the timing of that operation would feel like a blessing.
In December, Jess’ rare genetic condition took us back to the neurology ward at Kings College Hospital as she faced another operation, this time to remove a brain tumour. A year ago we were told that we had a 2-year window to schedule this surgery, the neurological team had been tracking the growth of the tumour and advised that beyond this two year period Jess would begin to suffer life-changing symptoms. As we contemplated the timing, we had to consider the potential impact on her GCSE exams, the summer of independence and freedom that followed and the start of her A Levels. It promised to be such a critical time in her personal, academic and social development, and we were given the onerous responsibility of choosing when to pause her progress.
The winter school holidays in Lower Sixth seemed to be the opportune moment that would cause the minimum disruption to all aspects of her life. Once the decision was made and agreed, we had a year of journeying towards that point. As time propelled us forward, Jess in her mature and calm way powered through her GCSEs and then focused on squeezing every magical moment that she possibly could from the gigs, music festivals, travelling and partying that followed.
In December we faced the standard stresses of receiving confirmation from the surgical team of a fixed date for surgery, whilst the nursing team simultaneously advised that a bed may not be available for her. The dull, ceaseless heartache of parenting a child that requires such extreme medical interventions permeates every moment, and yet we rise, powerful and protective. At 5pm, as the rest of the country took to the polls to vote on Election Day, a bed became available and Jess was admitted. As we have grown accustomed, we were given exemplary care throughout our stay, the NHS staffing team displaying limitless kindness and professionalism. Our only focus was on Jess and her recovery. What a privilege.
As Jess tapped into her limitless grit and determination post-surgery, she focused on building up her strength by ambling up and down the corridors of the paediatric ward. She had outgrown the ‘hospital library’, but as we wandered past the open door, we noticed two books nestled among the crowded bookshelves. Somehow, our Treehouse at Number Nine books had arrived and settled into the ward ahead of us. We collectively felt so proud and seeing the books propped up on those busy shelves demonstrated that our Treehouse Genies characters were becoming readily available as both a reassurance and distraction for patients, siblings and parents in hospital wards.
As I sit here in an endlessly still and quiet moment today, I think of those who sustain the NHS and the unprecedented challenges that they currently face – the nurses, the porters, the cleaners, the doctors, the caterers – with a sense of wonderment and admiration. I think of those who are fighting this virus and their pain. And I think all of the parents who have had to make similar decisions to us, a year in advance. Unknowing and oblivious to the fact that a deadly virus would creep silently into every corner of our local communities, that would in turn overwhelm and paralyse our beloved NHS. I think of these parents today, those who have spent the past year shuffling towards scheduled surgeries that are now either going ahead in unimaginable circumstances or alternatively face them being postponed or cancelled altogether. Whilst we all collectively follow the progress of the virus on our screens from the confines of self-isolation, hopeful that the graphs and data will confirm that we have managed to flatten the critical curve, my heart aches for those whose conditions cannot be cured or fixed through self-isolation alone. The infinite journey of parents of children with underlying health conditions will extend far beyond this current moment that we hope, will come to pass.
Visit our website at www.treehousegenies.com to be entertained: meet our characters and learn about their adventures!
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