This morning, Wills and I set off for our monthly appointment with our amazing gastro team at Chelsea and Westminster Hospital. Each month, we sit down with our intestinal failure consultant, nurse specialist, pharmacist and dietician to look at William’s weekly blood tests, weight and growth and make sure his personal, individual recipe of nutrients, electrolytes and fluid in his TPN (the intravenous feed William carries around in a rucksack 20 hours a day) is working for him and to discuss any symptoms or other difficulties we are experiencing. William is losing about two litres of fluid and electrolytes through his failing bowel at the moment and so this is a tricky balancing act and we often make tweaks and changes between clinics on the basis of his weekly blood results. Today, we could have added more fluid to the 3.7 litres he carries around with him but the team could see how heavy his rucksack is as it is. He is clinically a bit dehydrated but his bloods were better this week so we left things are they are. The balance is a fine one but it is there for now. It won’t take much to throw William’s urea and electrolyte bloods out of kilter again and, when that happens, his rucksack may just get a little bit heavier.
When we went through William’s fist transplant, and the years of him being so unwell leading up to it, I often found myself thinking those four difficult words ‘if only I’d known.’ Looking back now, it should really be ‘if only I’d experienced,’ or ‘if only I’d understood,’ because I knew a lot of things. People told me things like spend more time with the other children, take some time away from the hospital, take some time out to see friends, to do something nice for you…but when you have a sick child people can say anything they like. Your focus remains on the child you fear you will loose. After all, everything and everyone will still be there afterwards right? Wrong! This is what my poem ‘A Letter To His Sister,’ I shared here on Sunday is all about. This time, facing transplant for the second time, I am in a privileged position to have that hindsight. In some ways it makes the experience all the more terrifying. I know what it feels like to be wondering around a city, filling the time while your child is in the operating theatre and you don’t know if you’ll see them again. I know how half of you wants to hug every single person you see and stand in the middle of the Bullring (or any other suitable public place) and shout as loud as you can;
“Hey everyone, listen up!! My son is getting his life back today, all this commercial, tacky rubbish in the shops around us means nothing, please take a minute to think about what really matters to you in this life and chase your dreams. Life is a gift. Oh, and if you are not on the organ donor register then sign right now.”
While the other half just wants to crawl to the bottom of a duvet and hibernate until it is all over and someone official takes control again and tells you everything is going to be OK.
The time your child is in the operating theatre for a transplant is a funny, limbo kind of a time. You spend the time before going to theatre on a ward, usually your main transplant ward which we are lucky enough to have the awesome Ward 8 at Birmingham Children’s Hospital - our second home and our second family for these past six years. You belong there and can feel comfort from this. Then, your child goes into theatre and their bed on the are is no more. When they return from theatre, you will be in PICU together but, until then, you don’t belong anywhere in the hospital. Your child has no bed or place there other than the theatre table and there are no parent rooms there. My hindsight is allowing me to formulate a plan. If William’s transplant takes place in the day, I will spend my time between Birmingham Art Gallery - a place we have spent many happy times and a place I love, and my favourite coffee shops. If I have one available, I will spend some of it in my Ronald McDonald House room, setting out my books and photos and making it home. If it is night, no matter how hard is seems, I will try and sleep because I know the next day will be demanding.
I digress slightly here from what I was trying to focus on though and this is balance. Just as William’s team work hard to keep his fluids and electrolytes in balance, I have learned the need for balance in life. The first time we waited for transplant it was all I could think about, focus on. This time round, it is very much the biggest thing that focuses my mind and the William’s medical needs the biggest things that focus my day and my time. First time round, I let myself get consumed by it to the extent that I barely belonged in the real world anymore. If the first transplant had not gone to plan, there would have been nothing left of me. I was William’s mother and so little else. I had allowed the enormity of what we were going through with him to erode everything else I was. This time, I am making sure that I stay who I am, in fact, I think I am becoming even more of who I am. When you are, once again, reminded of the fragility of life you can not help but evaluate what life is for you and what you are here to do. For me, aside from my family, writing is the most important thing and what I think I was put on the earth to do. As this blog shows, I am writing more than ever at the moment and, by doing so, I am staying me, growing as me and coping so so much better than first time. I am also spending more time with my girls and with friends. At times, just like in William’s bloods, I am challenged and I wobble and get out of kilter but, on the whole, I feel I am pretty balanced and this is the main thing my hindsight has taught me. There is something huge happening but it’s happening in the context of William’s life, my daughters’ life and my own life and within all of that, it has to be balanced.
2. In a milisecond…
Some years ago, I spent some time with the wonderful folk at Eaves Charity for Women shadowing their amazing work with women who had been trafficked into the UK as sex or domestic slaves, were victims of horrendous domestic violence or who had experienced sexual abuse or assault. I was there as a journalist, getting a real inside view in their work to pitch and write magazine features about it. It was a poignant and eye opening time and, as writing is often very solitary, I loved my week in an open plan office working on a desk among women who soon felt very much like my colleagues.
One evening, William was staying with his Dad and I was working late before meeting a friend for farewell drinks before he moved back to his homeland in Spain. I was writing up some notes and chatting when we all heard the most sickening smash, like thousands of plates being dropped simultaneously. Some of the girls ran straight to the window to look. Something deep inside me was telling me not to look but, eventually, I felt compelled to join them. Immediately, I wished I stayed at my desk. In my imagination, two cars had collided and there was a bit of twisted metal and broken glass but no serious injuries. In reality, it was a motor cyclist who had collided with a car. His helmet had flown off at impact and he had landed head first on the road several metres away. I don’t need or desire to tell you what the scene was like, immediately below the window I was viewing it from. It is a scene I have never since been able to erase from my memory. Nor the scenes I watched as the ambulance came and paramedics worked and worked to pummel his chest into beating and squeeze life back into him from a green plastic hand pump. I didn’t want to see any of it but, once I was at the window, I was glued. I couldn’t stop. It was like the kind nightmare where you have to stay there to get to the resolution or it will haunt you forever. Except, the resolution came the next morning when we passed the yellow police ‘fatal accident boards’ on the way into the office, confirming what we all knew before the ambulance even arrived.
All I could think of, and what I still think of often, is the moment that man’s family received the phone call or visit to tell them. In that split second, as he collided with the car, his life was over and their was changed forever. As we were watching the futile attempts to change this horrific reality, they would have been making their own journeys home or playing with children home after school, perhaps beginning to prepare the evening meal, expecting him to be opening the door soon, totally oblivious to the scene we were witnessing outside our office window.
Today, in Croydon, a man in his 50s collided with an articulated lorry. From what I heard from the Tesco delivery man, running over an hour late because of the resulting traffic chaos and from what I read on twitter this afternoon, this resulting scened was even more horrific than that I saw after there motorbike crash. My thoughts tonight are with that man’s family and friends and also to everyone who witnessed what happened first hand. That mili second will have changed all of them.
Wills and I have spent a lot of time in hospitals. I remember one day a child came onto the ward in our local hospital with severe fits. Things got worse and the child was transferred to a larger hospital for intensive care treatment. I never knew for sure what happened next but I seem to think it wasn’t good. I spent a lot of time then comparing that family’s situation and our own. I came to the conclusion that if you have a child with a life threatening or limiting illness you are in a very privileged place. You know there is a chance you will loose them one day and you can plan for it. You can plan how you want their end to be in an ideal world, you can plan what kind of a goodbye you want and, perhaps most importantly, you can plan, as best as possible at least, how you will cope as a family and you are going to keep alive and breathing afterwards. Most of all, you know to spend life making memories and making every moment count as best you can.
I often think about William’s first precious donor family. I hope they had some time at least to come to terms with and understand what was happening. And I think of our next donor family. At the moment, they are somewhere out there in the world, getting on with life and one day something will happen, perhaps in that millisecond, that will change their lives forever. This could be the end, a total tragedy. But when a donor family days yes, that thing, whatever happened in that tiny fraction of time saves several, up to nine lives and transforms oh so many more. It’s a huge thing to think about isn’t it. I will certainly be coming back to this in the coming weeks….
3. The Tipping Point
Today’s blog has been a bit rambling but there is lots there I’ll return to in more considered writings, weaving the ideas into a story or forming them into a poem.
This is a piece I first wrote in a workshop a couple of years ago and have tweaked ever since. Today, I played with it to make it into a sonnet. I’m sharing it here because it is also about that millisecond but, in this case, it is a ‘penny drop moment.’ The poem was inspired by a real person I was pressed up against on a busy tram one evening. His eyes were piercing and there was something that intrigued me and set me off imagining where he had come from and what was going on in his thoughts.
The Tipping Point
The general stood infirmly, his force travelling through
his right foot placed up against the fence, making it give.
“Yeah, he’s gonna kick it down bruv!”
laughed those gathered round standing, waiting,
Conjuring a mist of anticipation
while taking cursory draws on cigarettes and
exhaling the smoke before it reached their lungs.
The general stood silently in a sea of his echoes.
“Smash it up!” “We’re gonna smash this place up!”
A wind of excitement he hadn’t commanded, this time.
The general stood and saw his reflection
on the face of seventeen children.
He walked away with emptiness
now he had seen his ugliness.