August 11th 2018 marked the twentieth anniversary of my brother’s death. (A cheery subject for a blog, I know!); but how can I not reflect on twenty years of loss, twenty years without Jack.
When my very fit and healthy mum announced at age forty-four she would like to try for a baby with her childless new partner, my sister and I (both in our mid-twenties) were enthusiastic and happy for her, for both of them. We loved Kev, of course, he needed to be a dad. The pregnancy went well until it was discovered during a routine scan that the baby boy had tiny blockages in his bowel. NOT a problem the doctor said, a tiny operation I think were his words, just one of those things, nothing too much to worry about…
Yes but life sometimes has other ideas and that small operation didn’t go so well, infection set in and that beautiful perfect looking baby had to endure a whole lot of operations (thirteen I think) It was a very big problem, because in the blink of an eye he’d been cut open so many times he had hardly any bowel left. The really bad news is that babies can’t grow without one. So this is how you keep a baby alive in this situation, firstly you give it a colostomy bag, then you insert a Hickman line and feed him intravenously through his tiny veins a nourishing concoction called TPN (total parental nutrition) which in 90% of patients causes liver dysfunction; that is if you are lucky enough to beat the 50% odds of not getting a sepsis infection and manage to keep access in those tiny veins. You will have tubes stuck up your nose where you are slowly fed droplets of milk, all the while losing your natural ability to suckle. Let alone chew or swallow real food. You stay nestled in a tiny room where strangers will keep you alive. And your family will watch on, willing you with every ounce of hope and faith that they can muster that you will in actual fact survive.
Enough with the medical history (too clinical), this is a tale of sorrow and joy of love and courage, of suffering and meaning and tragedy! (You know the ending).
For three and a half years Jack lived in a room at the children’s Hospital in Hackney Road. This is pretty much where my mum lived too. And the rest of us congregated at every opportunity. Where the gruesome world of trying to fix incredibly sick children takes place, with luck something the majority of new mums and dads will never have to see. Angels in uniforms, try desperately hard to make life more bearable and less painful. Whilst keeping your spirit and baby alive. The nursing staff is now your new family. Parents of equally sick children are now your friends. You are part of a special club that nobody wants to join. The odds of survival weren’t good; funerals became more frequent than birthday parties.
When Jack was allowed home it was always scary for mum, the extent of her medical training was watching George Clooney on ER, before Jack she was squeamish if you needed a plaster; but now had the complete responsibility of keeping this precious soul free from infection. Infection kills! Did I mention my other brother was only fourteen whilst all this was happening? It was tough on her; on us all. With me and my sister yet to have our own children it felt a bit like he was ours as much as he was any ones. We all loved him so much. This is the love part the part about joy, everyone just adored him, he was funny and spoilt and beautiful and brave. Really sick kids always are. They have to be. They endure with dignity. He brought us great joy. The trouble with love; it makes us blind and selfish. That love was so intense we just wanted him to live when sometimes the suffering, the needles, the drugs, the operations, become too much for all involved. Our emotional greed for never wanting to lose the people we cherish most is something I doubt I will ever be able to overcome, as a Yogi and part-time Buddhist I know I should be working on non-attachment. As a sensitive being full of love for my people it’s never going to happen!
So let’s fast forward a little, as predicted by the unfavourable odds, of course, Jack’s liver didn’t much like the TPN; did I mention how you can’t live without a liver! Even if you are lucky enough to have a bowel. So as he grew so did our need for him to survive, we hoped and prayed for a miracle and only saw a little boy and not his illness. A trick that fascinates me, I believe love disguises real sickness and disability otherwise how else could you look that person in the eye and smile and not show despair. We all questioned why strangers stared like he was an alien, (don’t stare!) after his death I struggled to look at photos that I’d taken at the end, he did look like a yellow alien bless him.
So before he got too sick there was HOPE, what was needed to fix this problem were a new bowel and a new liver. I wanted to write something inspiring to convince you all to go out and register @organdonation.nhs.uk but thankfully before long the opt-out initiative will make more organs readily available and people won’t have to run out of time. That’s the irony you have to be at death’s door to win first prize but well enough to claim it. I get that the whole donating your organs thing is massive, my husband was at the bedside of a dying three and a half-year-old, he carried the coffin and he is still isn’t comfortable with it. You know I’m giving them away anyway!!! (Don’t worry Spence, it’s fine I’ll try and die first.) What stuck with me through this experience is the simple truth, would you take one? Would you want a kidney for your mum, a heart for yourself, a liver for your brother so people could stop staring at his fluorescent yellow eyeballs? Would you take such a gift, if the answer is yes then the right thing to do is carry that card. You could give blood, stem cells? Okay enough with the pressure sales.
After Jack died as a family we got busy making babies. One year on my mum had four grandchildren, so we poured all that love into them. They distracted us from sadness. It hit home hard to me how super strong my mum actually was. How did she bear it? No drama no bitterness, no why me? Not even any counselling or pills to numb the pain. With each of my pregnancies, I didn’t care if I was to be blessed with a particular sex I was just grateful to have a whole baby with functioning organs. Growing a baby, childbirth it’s miraculous. Every day I am grateful for health. When my babies reached three and a half, just when they are starting to become little people I questioned how you would cope with a loss like that.
Skip forward twenty years and what does grief feel like? As we know thankfully it loses momentum with every passing year. We say things like “Ahh but it was a long time ago” but memories have a magical power that can make thirty years feel like thirty minutes. That’s why people get trapped in an era of their favourite ones or haunted by their worst. Moments can make you smile or reduce you to tears. It’s what is lost that causes the sadness. That feeling that someone is missing. All that potential unfulfilled. A faded photo. A ghost in your home.
Is it Karma that decides our fate and dishes out the good, bad and ugly experiences of life? I like to think more along the lines of spiritual belief; that we choose our lessons for this lifetime and only the bravest sign up for this kind of boot camp! Mum, you’re coming back as a saint!
Special people are given special babies.
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