In the midst of the raging storm, you bow your head to the wind, pull your coat tight around you and do what it takes to make it through. You gather together, stronger against the blows of the storm, blocking out anything except survival. All that matters is outlasting the storm.
The wind pulls at you and the rain lashes so hard it hurts. Fences are ripped from the ground and you shield yourself against potential blows from loose branches. Briefly, the wind lets up and you look around, hardly able to recognise where you are. You know where you should be, but branches torn from trees, garden furniture overturned, the sky black – it doesn’t look how it should. If only you could get inside, but you seem to have lost the house keys in the melee. Then the sun breaks through the clouds, and you breathe. You can put the garden right, take off your coat and sit for a while on the bench you have turned upright. It will be ok. You look at the flowers not the sky so you miss the gathering clouds and before you know it, it starts again – wind, rain, hail. The storm hits even harder – could this be a tornado? It certainly feels strong enough! You wrap your coat around you once more, lean together, heads bowed and pray. You still can’t find the stupid keys for the door. You can’t go home. The world is no longer safe.
Then suddenly, it stops. The clouds break apart, the tweeting of birds replaces the sounds of distressed trees and greenhouses. You look up to be sure – the sky is blue. You look around – it still looks like your garden, but your garden has changed. You have changed. The storm is over but nothing will ever be the same.
As the weeks turn into months, you find that all you can talk about, all that fills your head is the storm. How to rebuild your garden. How to protect your garden. What will happen if the storm comes back. Even when you sit with your feet up, basking in the sunshine, there is a fear in the back of your mind. Will the storm come back? Will we make it through next time? Every cloud is a risk, a threat, a fear, an omen, a sign, a warning. Every cloud could be the start. Every cloud could be the end.
For 18 months we lived the storm with Xavier. In and out of hospital for weeks and months at a time. When he was 1 he had cumulatively spent 28 weeks in hospital. More in that out. The discharge in August was conditional on an operation in September. Discharge in September was conditional on an operation in December. Discharge in December was just discharge. He was ok. Life could go back to normal. Everything would be good now.
But the last 10 months haven’t been what I expected. My garden has changed irrevocably and so has the view. How can I be anything but happy every day knowing that he is home and staying home with us? How can everyday not be e erythig I could ever hope for?
How come it isn’t that easy?
How do i make the fear dissipate like the puddles after the storm?
Everything will be good now. Unless the regular X-Rays are bad. Or he gets ill again. Or something else happens…
I have days when I just want to cry and I don’t even know why. Even writing this, I feel such guilt for not living every day full on limitless joy. I see all the things he can’t do and struggles with as much as all the amazing things he has achieved. I see the things which are so hard for him and so scary and wonder if it is nature or nurture. Would he still find so much so hard if his path had been easier?
He sat in the living room today, squatted down on his haunches and I marvelled at the core strength required to sit like that, so still and strong. The core strength for a toddler who has had his tummy sliced open 5 times, who is too young to understand that and therefore too young to not just do it. He doesn’t understand that the world has placed expectations on his limitations since he was born, and so he fails to stop at those boundaries. He has always exceeded expectations – from the very first visits from the Community Nurses who were surprised how bright and alert he was, the physiotherapist who was utterly thrilled he was sitting on my lap with his wobbly little head because she had seen his notes, has assumed all he would be.
And yet, and yet…
I see the fear when he see’s a stethoscope – some link of memory, synapses firing to remind him bad things come of cold stethoscopes. I pin him with practised ease, calmly singing songs whilst he screams. SATS checks, ECHO’s, X-Rays, examinations.
I see the tears and panic when another toddler comes near, wants to interact – more than just the usual toddler tantrums although that is surely part of it. Is it speech? Can he sense his inability to communicate in the same way, that he won’t be interpreted as well as by an adult? Or something else, something he didn’t gain along the way during those months in hospital. Something so basic that children don’t even realise they have learnt – that they are all children and therefore children are safe.
I watch children eat – sandwiches and fruit, drinks from cartons, a plate full gone and requests for pudding. I watch avidly and delightfully and jealously as I attach Xavier’s feed pump to his PEG to pump milk direct into him. On good days he can be lured with his favourite foods into eating – chocolate, baked beans, cheese crisps. If we get 100 calories in orally it’s a successful day but on a bad day the sight of certain foods or textures can trigger a retch and vomit.
I listen to babies babble and toddler talk and I try not to let anyone see my tears. To hear him say a word, any word – it is literally what my dreams are made of. I wonder what his voice would sound like if he could talk, rather than the aaggghhhhh’s and uh uh’s that pepper our day. What would he ask for when I have passed him every item he is pointing at and yet he is still pointing? What would he tell me when he cries in the middle of the night. Could he tell me wby he is so scared of the bath? How sweet would it be to hear him randomly singing Incey Wince Spider when out of no where he starts to do the actions. I suspect I would hear “Mr Tumble” a million times a day.
All these things were lost in that four month period of hospital, and yet what right have i to be sad? We have something more precious that anything else – we have Xavier. The doctors got him through and that’s all that should matter. It is all that really matters. But the thoughts are there and I have. Myself for them. Is he so upset by other children because he understands he cannot communicate with them? What goes through his head when he refuses to put food into his mouth, or take a drink, or retches at the sight of a food he ate two weeks ago. Are the 24 hours that he just went without a poo a cause for concern or a sign we can wean him a little more off his medication? Was that a vomit or a VOMIT? Does he cry in the night with nightmares of needles and oxygen masks, or just monsters under the bed? Is that cry of pain his back molars pushing through a little more or something inside of him twisting and sticking and blocking? How well would he cope with a prolonged hospitalisation now that he’s so much more wary and aware? Is nursery help or hinder? How do I convince him doctors just want to help? How much more carefree would he be if it had never happened. How much happier if we’d dealt with it better? How am I surprised I cannot sleep with all of this in my head? How do i turn it off?
People assume that coming home is the end of the journey, that baring medical emergencies everything will be fine now. Get over it. Pull yourself together. Move on. Stop dwelling. Stop imagining. Stop thinking. Stop worrying. But it isn’t that simple.
For those of us who escape the early months without PND, a form of PTSD is scarily common for parents of children who have been critically ill, especially once the crisis has passed. When else is there time to process it but once it all begins to slow down? Whilst the storm is raging there isn’t time to contemplate the fences or the flowers – you need the calm and peace to truly understand what has happened, and what can happen. It’s like looking into Pandora’s box – all the possibilities are there but you need that quiet space to really empty it all on the f!oor and examine it properly.
Whilst most parents assume that everything will be fine, you know everything that can go wrong. A cough isn’t a cough – it’s a potential chest infection. Is it aspiration? Reflux? A bug? A hospital stay? More oxygen? Is it better to have another dose of antibiotics only a few weeks after the last one or see if it goes away? Will the GP examine them properly or panic and send you to hospital – that cesspool of germs? Will the GP examine them properly or assume you’re just being paranoid – again? Every potentially normal toddler tic and peculiarity is something to note for the next paeds appointment because you’re so scared of missing something and so hyper-aware.
He’s doing so well but his life is far from that of his little friends who he studiously avoids at playdates. He has a cardiologist, two respiratory consultants, a paediatric consultant, a surgeon, community nurses, specialist Health Visitors, SALT, speech, portage…; referrals to urology, gastroenterology, ENT…; he needs 121 support when he goes to nursery. The village it purportedly takes to raise a child is composed of paid professionals who have known him most of his life.
We are lucky, lucky beyond words that he as come so far, achieved so much. His doctors are amazed how well he is doing (ok, maybe not his respiratory doctors but even they are expectant of eventual success).
But we are still an unlucky minority, the chances of none of this statistically happening were in our favour and yet some how we lost the bet. The genetic duplication misfired. The right bits didn’t grow. The wrong bits stopped working. His body couldn’t do it all on his own. That knowledge will always be there, the possibility and fear is something I can only hope will ebb away, perhaps when he has been home longer than that 18 months of chaos. Perhaps when he is running around school, playing without an o2 tube trailing behind him, his stomach full from a full meal he ate himself. Perhaps when he is grown and taller than me.
But we are still an unlikely minority, the chances of him being here, stable, achieving so much were not in our favour. We won the bet and our winnings are our smart, beautiful, giggly, kissy, funny toddler who loves feeding the ducks and numbers and Mr Tumble and Skye from Paw Patrol.
Perhaps this fear is just who I am now – perhaps a little bit of me became wonky just like Xavier’s chromosomes and like them, can never be put straight. Perhaps that’s why we fit so perfectly.
Perhaps I need to learn that this is ok. If you read this and recognise yourself in these words, it’s ok to not be ok. Just like our children, these wonky bits make us stronger. They do not define us, but they will always be a part of us.
I am the proudest mommy, I have the bravest son, and sometimes I cry myself to sleep wishing our lives were different.
Nothing comes through the storm unchanged, nothing can weather that onslaught without taking on some damage. And yet to still be standing afterwards, we must surely be stronger than we realised. We pray every day that the storm will stay away but if it does return, we have done this before. We will do it again. We will see sunshine once more.