As a family portrait photographer I love learning more about my clients. I asked Jessica, a mum from North London, to share a family story with me. What came made me cry and hug my own children a little closer. Thank you Jessica for reminding me to be grateful and count my blessings.
“Shabbat is the Jewish day of rest. It begins before sunset on Friday and ends after nightfall on Saturday. In a hospital ward, where candles cannot be lit, many have the custom to use small electric tea lights.
There is nothing quite like the beginning of Shabbat. Every Friday before the sun sets, I cheerfully anticipate the feeling of peace that I know will rush through my body and soul after I light my Shabbat candles, set in the silver candlesticks passed down through generations of my family. As I light, I often imagine a well-lined face surrounded by a shawl in a dimly lit shtetl cottage. Her mouth moves to the same pattern as mine, praying for her children and grandchildren.
But on Friday 16th November 2018, there was no match to strike, no long white candles, no silver candlesticks. No feeling of peace.
The flick of two small switches on the underside of a pair of electric tea lights gave me no respite from the exhaustion and fear that had consumed me for days. If anything, I was more anxious than ever.
We were nearing the end of day six of Hillel’s confinement to a tiny room in Barnet hospital, and it was his birthday. He was exactly one month old.
I knew only too well that it was day six, because day five was the deadline that the doctors had given us for his illness to ‘turn a corner’. Until then, we were assured, “Today might be the day he gets better…. actually his oxygen levels are down again, we need to stop the tube feeds… and let’s turn the pressure level back up…” A torturous cycle of hope and disappointment that accompanied an unrelenting, frightening responsibility for this very sick child who my two older children had joyfully welcomed home a few weeks earlier.
For five nights I snatched fitful snippets of broken sleep, fearful that I wouldn’t hear my baby the next time he had a coughing fit and needed my help. The only respite was visits from family, and the only structure was the three-hourly hum of the breast pump and my little trips to the ward freezer.
Nothing in those unbearable five days could have prepared me for what happened that Friday, not long before I flicked the switches on the electric tea lights.
As had so often been the case I was alone with Hillel, just watching him attentively as he lay at the centre of the too-large bed with more tubes visible than body parts, when he went very quiet. My eyes immediately shifted to the green numbers on the monitor, which were dropping. Too far and too fast. I shouted, nurses came. I can’t remember what they did but the numbers picked up again and he was ok. I wondered dizzily if it had been real, or if I had made a mistake, or if what I had seen was simply a confused product of sleep deprivation.
But then it happened a second time, only this time my husband was there too and I definitely didn’t imagine it. A (thankfully) jittery nurse who I had never seen before appeared and pressed the big red button on the wall behind Hillel’s bed.
Our six days at Barnet hospital ended very much how they had started, when Hillel had been rushed to resuscitation in A&E and surrounded by medical staff within minutes of our arrival. Only this time at least three times as many doctors and nurses appeared, and we the parents were sent outside so that they could determine our son’s fate out of earshot.
Shabbat is a joyful time and we aren’t supposed to cry, but as I stood outside the closed door to Hillel’s hospital room, shocked and helpless, I cracked. Once I started I couldn’t stop, and I’m pretty sure I unwittingly terrified all the other parents and their kids on the open-plan ward nearby with their broken legs, appendicitis and other minor ailments.
Before long we were told that Hillel would need to be put to sleep, a tube inserted into his throat and a ventilator used to do his breathing for him. “He’s just too tired” they said.
I may not be medically trained but it wasn’t hard to grasp what “tired” was code for.
We were also told that the best paediatric anaesthetist in the entire hospital would be performing this delicate procedure. We wished Hillel didn’t need someone quite so well-qualified.
I have never prayed and cried as hard as I did that evening in the dark, silent waiting room on the third floor of the hospital, far away from my little one. I didn’t know where he was and wasn’t allowed anywhere near in any case. Finally, the best anaesthetist in the hospital appeared at the door.
His first words to us: “He’s alive”.
Then there was more waiting. Which hospital with a paediatric intensive care unit would Hillel be transferred to? How long until the specialist ambulance service would arrive? And then the lengthy process of transferring Hillel into the capsule they use for transporting very sick babies.
When we finally arrived at the surprisingly calm St Mary’s PICU at two o’clock in the morning, we soon began turning a long-awaited corner. The doctors were going to test Hillel for absolutely everything, he would have 24-hour nursing care and bronchi babies like him were their ‘bread and butter’. Shabbat finally enveloped us in its cloak of comfort and peace.
I will never forget what Hillel went through, and I still have flashbacks two and a half years later. But recounting this painful story reminds me to try and make the most of the time I’ve been given in this world, to live in the moment instead of being stuck in my own head, to cuddle my children more, to just sit and watch them and soak in their beautiful innocence as they play. To recognise that life’s hurdles – big and small – are all opportunities for growth. And to be grateful for every Friday that I am blessed with the chance to strike a match and light those long white candles again, with all three of my children by my side.”