STANDING IN OUR bedroom in Spain, I was enjoying time with my 11-month-old son, holding him gently in my arms, feeling his warm skin, revelling in his presence.
But I was also acknowledging the pain he was experiencing. Just the previous night, my wife, Beatrice, and I had watched as he suffered multiple heart failures, each one threatening the end.
He wasn’t ready to go, he kept recovering, the heart rate machine continually pinging back from its deathly silence. After those difficult hours, my wife and I had taken him into our bed for the night, knowing that it could be our last few hours as a family of four.
But despite the fear still pulsing through my body, at this particular moment, I was completely immersed in Joshua’s beauty, sunk deep into his big brown eyes, heart-wrenchingly thankful for every heartbeat of his time with us and the resolution in his fight.
We knew these were the final hours, but we wanted his death to be peaceful and dignified.
The shock of the news
Rewind eleven months. We were enjoying our last holiday before the arrival of our second son, travelling to Spain for a week with our firstborn, Luca, who was nearly three at the time.
We were living in the UK and I had just exited a business, so we were enjoying some happy, relaxing time as a family. I will always remember at some point on that trip uttering the words I would soon come to regret:
Life is really good right now.
The following morning, Beatrice woke me with broken waters. I couldn’t quite comprehend her words as she was only 25 weeks pregnant, and we were hundreds of kilometres away from the nearest hospital.
We grabbed some things and headed west to Malaga, hoping people would speak enough English for us to communicate our urgency. After many hours characterised by increasing anxiety, we eventually found our way to the maternity hospital where Beatrice was examined.
The doctors were clear—she had to stay in the hospital for the next eight weeks to give the unborn baby the best possible chance of staying in the womb, and thus, surviving. We couldn’t fly back to the UK, so Malaga was to become our unexpected home. I wanted to fall to my knees and cry, but with a small child and my wife in hospital, that was a liberty not afforded to me.
Instead, I took Luca to find a hotel to stay for a few nights. In the coming days, we transitioned from holiday mode to warped, limbo-esq domesticity as we moved into a house and life took on a new, uncertain routine. I had a successful business career in London, a career in which I always sought to be in control, to lead and to be decisive. In that part of my life, my attention was always racing ahead to the future.
Now, the Universe (or God, or whatever you believe) had decided to confiscate that control; I was permitted only the status of a bystander, without influence or a voice. My future was no longer there to project to. Every moment was lived in the present.
Everything was unravelling and pulling at my last remaining threads of security, nothing was safe, everything was fluid. Yet, our spirits were high and we found hope in each day that passed, as the chances of the survival of our unborn child increased.
Not an easy road to pregnancy
Before this pregnancy we had suffered three miscarriages, so we were used to the pain of loss. At some indeterminable point, though, this experience started to feel quite different. I became very aware of an impending sense of hopelessness, but I also had to maintain my belief that we could come through this.
On the fifth day, I walked into the hospital ward to find Beatrice surrounded by doctors trying to find a heartbeat on the ultrasound, without success. The baby was distressed and an emergency caesarean was ordered.
Beatrice was rushed to the operating theatre but I was told to stay behind. As the doors closed, I cried and fell to my knees. I had no idea where they had taken her or what would happen next, and I couldn’t find anyone who could speak English. Seven to eight hours of waiting and wandering the hospital passed.
Finally, I found someone who told me that the baby had been delivered, a boy, but he was unlikely to survive the night. I was handed paperwork and told to name him. Joshua was born at 26-weeks, weighing 900 grams, just under 2lbs. He survived that night. And then another. And another.
What followed was six months in neonatal intensive care in Malaga maternity hospital. Over those months, Joshua received blood transfusions, suffered collapsed lungs, pneumonia, bronchiolitis, and was constantly placed back on life support (intubated). We learnt ‘Kangaroo care’ (skin-to-skin contact) with this tiny little, helpless being.
Our car journeys to and from the hospital often felt like a mobile dairy, with Beatrice expressing milk and the two of us trying to catch up with each other as we dashed between hospital and crèche, where Luca spent a few hours each day as we tried to hold our life and family together.
Our new normal
After six months, we were able to train as Joshua’s carers and take him home. The promised light came with one caveat: we had to remain within two kilometres of the hospital so the medical team could visit daily.
Joshua was tube fed, oxygen-dependent, and needed constant machine suction assistance to clean out his lungs. As stressful as it was, it meant we would be a complete family of four under one roof. Luca could be with his brother, and the step forward symbolised, to us, a first step towards the possibility of returning home together.
The following five months as our son’s carers were a rollercoaster. Newborns rarely afford their parents much sleep, but Joshua’s needs had us positively nocturnal. Not to mention the constant hospital visits and Joshua always falling foul to infections. But our flame of hope remained and we started making plans to leave Spain, even planning to seek the support of the wonderful team at Jack & Jill Children’s Foundation.
It wasn’t to be
But on Christmas Day 2010, Joshua was hit with another infection and rushed to hospital as he went into a sudden downward spiral. He was resuscitated, but doctors told us that he wouldn’t be able to handle another resuscitation, that each medical procedure he fought his way through was just too much of a toll on his tiny body. All that was left now was palliative care. We took him back to the house so his final days and his death could be non-medicated, peaceful and with us, as a family.
Those 11 months had been hard. But nobody had it tougher than Joshua; his spirit was ready to be freed from the pain and discomfort of his body. As Beatrice walked into the bedroom, I gently passed our son into her arms. As he rested against her chest, he took his final breath and succumbed to eternal safety and the promise of returning home, but now in possession of the love, he came to Earth for.
These tough but beautiful 11 months forever changed our lives. Looking back, there are no regrets, just smiles, love and gratitude for everything we had over this period. There are deep lessons within trauma, loss and recovery, but only if we are available to listen to them.
Grief is tough, but it can help you grow
Grief is painful, of course, it is. We could ask, ‘Why us? Why Joshua?’. But the answers to those questions would never have lain in victimhood. Instead, we found them in our choice to see the other side.
We chose to see the gift in Joshua’s story, and our part in it. And in choosing this perspective we found the answers inherent in these questions.
Because Joshua came to teach us. That was always his purpose. Joshua was my first, youngest, and wisest mindfulness teacher. He made us all stop and live in the moment.
We gained a superpower during that year as a family of four: the mighty capacity to live in the present moment. Yes, in time, I would struggle with PTSD and be forced to make massive changes to my life, but these were changes deeply entwined with Joshua’s legacy and his purpose in my life.
He was the great, little instigator in awakening me to my own life purpose. It’s summed up perfectly in the words of The Rolling Stones “you can’t always get what you want, but if you try, sometimes you get what you need.”
Justin Caffrey is an Elite Mindset Coach and keynote speaker. He specialises in the art of mindfulness for business and life. Find him at www.justincaffrey.com, LinkedIn or Instagram.
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