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By the time you have finished reading this story, I will have lied to you.

I am not lying out of malice or a misplaced sense of fun, but because I have to. Because if you believe the lie, I will have finally have  found a way to have told the truth. And it is a truth that has been a long time coming (if the empty months of the blog archives are anything to judge me by).

But first let me tell you why I have finally decided that now, with the house in silence except for a whining dog pretending to bark in her sleep, is the right time. It seems, after nearly half a year of stuttering and stumbling over how to explain what happened next , all I actually needed was a small (incredibly brave) little boy to give me a virtual slap around the face in order for me to get the hell over it and just sit down and write.

I could, reasonably I think, say that the advantage of being a mother to three borderline eccentric, sporadically wise children is that it reminds me that, as much as us adults puff up our chests and declare our intellectual superiority over our kids, it is only right that we occasionally admit that sometimes (quite often in my case) they actually know better than us and really we should spend less time trying to keep them quiet and more time listening to them. They are, after all, reflecting our unworldweary former selves back at us, you know the ones we forgot about in all the stress of queuing for a Starbucks or dealing with the automated voice recording that our banks so kindly use to avoid having to talk to us.

It is with this in mind that I let myself get taught a lesson by the smallest of my small people, rather than just retreating to the corner on the sofa and pretending that all was right with the world like I normally would. I have retreated to that corner so many times in the last year that now, when I vacate the spot, I think I must leave a butt shaped smile indented in the fabric. This behaviour, or coping mechanism if you will, is often put down to emotional resilience, which is ironic when you consider that my retreat is the human equivalent of the dog slinking off to hide under the bed and fart in response to a stressful situation- although I’d better point out that I don’t actually sit here farting as I type.

So what changed? It is not my normal policy to let the shortest human being in my family unduly influence my behaviour. After all, if he had his way, wearing anything other than a superhero outfit or pyjamas as we went about our daily activities (ninja outfits for special occasions) would be the norm and whole weekends would be set aside for spiritual pursuits… such as completing Skylanders Giants. In many ways Dominic is like many other 6 year old wannabe-dictators and jumps from one obsession to another (usually after you’ve just managed to acquire the world’s biggest amount of plastic shit relating to whatever is currently in favour). But despite his penchant for the ugliest, crappiest toys he can get his hands on (usually from McDonalds, which can be unusually problematic for a vegetarian family) there is, undeniably, one area that he is very different from his peers. He knows what it is to be brave. Not the in-your-face brave that you see played out in the school playground, when the small kid throws themselves at the monkey bars not entirely sure if their outstretched fingers will find purchase or if they will instead find themselves landing, face first, on the harder-than-you-would-imagine rubber beneath. Dominic is the sort of brave that if adults thought about it, you know, properly thought about it, they would instantly feel ever-so-slightly inadequate, like most adults do in that awkward moment when they admit to themselves that they couldn’t, hand on heart say that they would have handled the situation with as much dignity and maturity as they saw the child (who still openly eats bogies in public) had.

Dignity and maturity is precisely what I saw in Dominic this evening. Let me start telling the story from the point that (just as I was about to take an enormous bite out of a very delicious looking cake) I heard screams of “mummeeeeeeeee…. MUMMEEEEEEEEEE”  coming from upstairs. I knew the second I heard them that something was wrong. It wasn’t the same as the
mmmuuuuuuuuuuuhmmmeeeeeeeeeeeeeyeeyah

that children do to get your attention, normally in response to some indignation felt at a sibling’s wrong doing. You know the sort, it makes your toes curl and eye lids twitch as though the noise was directly sliding down your nerves. However, this was a there-is-something-seriously-wrong scream, and I shot off the sofa and up the stairs, hesitating briefly to say farewell to what remained of the cake (that I had balanced precariously on the teetering pile of papers just in front of the labradoodle who was licking her lips in anticipation) and then ungracefully leaping up the stairs two at a time. I burst into Dominic’s bedroom to find Roger frozen in horror, a tube swinging in front of him that should have been on the inside of the (screaming) child on the bed. As soon as I saw Dominic I immediately relaxed though, this time it was a simple fix. No mad dashes to hospital, no battles with junior doctors, no problem.

And so with an efficiency that even a Marks and Spencers bra fitter would have been proud of, I clicked into problem solving mode. Fast, efficient and confident. I sat next to him and in a very no nonsense way told him that I would have to leave him, but only for a couple of minutes to get what I needed, but then I would come straight back. I explained that I needed him to stay calm and stay still and not worry because this was an easy thing to fix. Dominic, intuitively calmed down and quietly waited for me to return, which I did armed with syringes and sealed packets of sterile equipment gratefully retrieved from the floor to ceiling cupboard that is dedicated to the medical bits that need to be within easy and quick reach. He watched me quietly, big brown eyes still shiny from crying, just nodding in answer to my questions as I set everything up that I needed.

I set everything up with the robotic efficiency of someone thinking through steps of a procedure they are about to undertake, only pausing from the ritual once. I noticed out of the corner of my eye that his legs were shaking despite his calm demeanour. I put down the syringes I was holding and placed my hand on his knees briefly and gave them a silent squeeze of reassurance before I returned to what I was doing. When I was satisfied that I had everything set up within grabbing distance, I turned to face him, noticing how long his eyelashes looked when they were wet and how his normally happy face looked pale and scared. I pushed the thoughts starting to crowd and suffocate reason out of my mind and picked up the various bits of equipment I needed and began talking him through everything I was about to do and why. He listened, nodding occasionally and doing his best to keep the fear and tears contained.

“Okay sweetie, take a big breath in…”

He complied without question and inserting the new feeding tube goes without incident. A perfect performance by both of us. I continue securing everything in place, fiddling, checking, securing before I lay the last syringe down and let myself finally scoop him up and feel his trembling body relax into me. I tell him quietly how proud I am of him and feel the small nod of acknowledgement against my shoulder. We remain like that for a few more precious moments and I’m mindful of the countless times he and I share these unspoken acknowledgements of what just passed. As his small arm snakes its way around my neck and gently squeezes, as though trying to comfort me, I wonder when it became so easy to accept the extraordinarily bravery my son shows on an almost daily basis as something merely ordinary. No special stickers or treats mark moments like this, they are dealt with and then they are forgotten about and Dominic and I go and quietly cope, him on one end of the sofa, me on the other.

You would be mistaken if you believed that this is any kind of bravery on my part though. How much easier it is to slip back into life, to retreat from the emotion and to forget for a while that however much we think we can ignore our fears, they find a way of making themselves known eventually. But this time was different. It reminded me of a similar event last summer that was undoubtedly one of the hardest things I’ve ever had to do as a mother. With this flash of memory I decided that I wouldn’t simply just this file the event and move on. This time, as I held my small boy in his small pyjamas (they were the ones that fit so snugly so you can see perfect outlines of their tiny knees and miniature arms) feeling his breathing calm and slow and the surprising weight of his head on my shoulder as he relaxed, I let the wall drop. It was an unconscious decision I think, I don’t remember having any great epiphany. Perhaps it was the sheer humanness of the warm little body in my arms, the hair smelling of cherries and almonds, the small hands playing with my hair? Maybe I finally listened to the overwhelming, protective love that is always there, always dampened down and contained in a way that means you can play nicely with the professionals even when you want to rip at your clothes and scream like a banshee in frustration at the way they rarely fail to disappoint.

Awareness of your child’s suffering, whether real or imagined is one of the most guttural pains imaginable. It is one you cannot become desensitised to, no matter how much exposure you get in your lifetime. Opening the door, even a crack to peek in, invites a darkness that I am afraid of. It brings with it fear, insecurity and pain that clamour on long after you slam the door shut again.  I am practised at silencing the roaring of emotions though, of shoving them back hard enough so that I can hear the rest of the world over the racket. This is why when you see me, I’ll probably smile at you. Not because I’m pretending or putting on a front, but because when you know what hell looks like, you can appreciate what heaven really is.

But at that moment I held in my arms a child that only 7 or 8 months earlier had lain in a similar , vulnerable position, shaking all over in pain as I tried and failed to get a new tube into his jejunostomy stoma which was not only too small for the mic-key button that needed to go into it, but was also so painful, even without me desperately pushing a tube at it, that even a t-shirt brushing over it had him doubled over in pain. Yet, time and time again, despite the pain he was in, and despite the fear that poured out of him in rivers of clammy sweat, he had let me try. Thirty minutes later when it was all I could do to not scream with the agony I felt at the responsibility of making the decision to try again, the scar tissue finally relented and the tube went in. The tube that he relied upon to stop his blood sugar dropping and without would mean that he would need to be rushed to hospital.

My hand was shaking so much by the time it finally gave way and went in I could barely hold the syringe to fill the balloon with water that would hold the tube in place. I honestly felt that a part of me had been broken forever as I wrapped myself around my trembling little boy trying to soak up all the hurt and fear, telling him that he was the bravest child in the world as I rocked him. With each repetition of the words I grew to believe that the very fact that I could put my own baby through such a thing, that I had coped, that I had even tried to do it in the first place, choosing to ignore my maternal instincts screaming at me to stop, showed what a damaged person I had become over the years. The relief and horror of what had just happened stuck to me, pressing heavily and darkly upon the small part inside of me that continued to cry long after I had outwardly pulled myself together and started trying to extract a giggle from the little boy fitting perfectly into the curve that my body left on his bed.

I stayed a long time that night with my THC cartridge to relieve some of the stress, and focusing on exciting things to come. The slight wobble in his voice was the only thing that betrayed him. I left his bedroom that night broken and humbled. Shortly after this event two things happened. Dominic ended up in hospital having surgery, and I stopped writing.

And here I was again, embracing and loving my child after performing a brutal act. How can a small boy accept such a polarity and still bring himself to love both versions of his mother? I hesitated in this limbo for a few seconds, letting my mind hear the roar of emotions before I shut the door with relief. I took a deep breath, kissed him firmly on the top of his head and then once on his neck, just to feel him squirm and hear the spontaneous burst of giggles that it always brings, and laid him gently in a small corner of a vast bed and tucked him in for the night. And as though nothing had happened, I returned to my spot on the sofa which is where I sit now, in my quiet house alone with my noisy mind. I opened my laptop, and, following the example of a small boy that chooses to celebrate the nightmare being over rather than dwelling on the horror he has just been through, for the first time in a long time I decided to draw a line under the past and I started to write.

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