4am and here I am………….typing at the computer, the few hours of sleep I’ve had all but deserted me now. Where has it gone so wrong? Things seemed to be going so well, but as I’m constantly reminded, disaster never seems particularly far away. I thought the constant nightmares that continued to haunt me had started to leave, be pushed away into some forgotten corner inside my very spacious head, but not so, and with good reason. awful day, the one whose anniversary is coming up in something like seven or so weeks’ time.

Something completely obtuse can open the floodgates. At the start of June I was very kindly invited to have a run about at the mixed hockey that has been a regular fixture over the last couple of years between the lower men’s and ladies’ teams, every two weeks over the course of the summer. Although I feel older than Noah himself, every molecule inside me is always desperate to pick up my stick and knock a ball about. So of course I turned up to the first session, giddy like an excited little kid. Faces old and new were there, more than required, allowing oldies like me to come off and have a rest during the four or five twenty minute sessions. With the teams split in two, one in yellow, the other in orange bibs, (something of which there weren’t enough of……so I donned my ancient orange Salisbury Mixed XI top from my stick bag, that is decades old) I set about trying to remember all of my extremely rusty skills, and pushing my knackered old body to the very edge of its limits, which didn’t take long considering I was up against youngsters a third of my age. Still……….you can’t beat experience. Well, you can sometimes, but on quite a lot of occasions it has the ability to make an instinctive stunning reverse stick tackle, or the occasional good looking aerial ball, all seemingly out of nothing.

I digress. After the first session was up, an umpire for the second session was required. I volunteered (more than happy to have a little rest……given the heat and all) and duly made my way across to the far side of the pitch, whistle in hand. I’d only got a few steps, when it hit me like an onrushing freight train, so much so, that it was all I could do not to break into tears. Reaching the far side of the pitch, and with both teams still getting organised, I tried to rally my thoughts, push them to the back of my mind, but as hard as I tried, I just couldn’t shake the images of that day that came flooding back to me.

It was the shirt that started it off……….innocuous in itself, but the catalyst this time. I’d turned up in a blue shirt, but with me being put on the orange side, and there being not enough bibs, as already mentioned, I found one of my favourite hockey shirts, old as it might be, and thought nothing more of it. What I realised, or rather something in the back of my mind did, as I walked over to the far side of the pitch all on my own, was the last time I had worn that shirt, was that very fateful day at the start of October 2013, when hockey training with both my kids and when, more importantly, I had to rush my eldest daughter up to the hospital, something that turned into the worst day of my life (see Worst Day Of My Life post)

I won’t bore you with the details, but I can remember every single part of the day, and I was stuck in my hockey kit (and THAT shirt) for all of it, and some of the following day……..as I’d slept there overnight, with no change of clothes…. with the exception of my shoes, which I’d managed to swap for sandals. Anyhow, just remembering the last time I’d worn THAT shirt had a profound impact on me, and as I’ve just stated, it was all I could do not to cry, the feelings were so strong from the memories of that fateful day. Since then, I’ve attended all but one of the hockey sessions, and have always had the shirt in my kit back, but so far, have got away with not needing to wear it, despite it being one of my favourites.

Up until then, I had been starting to get sucked into thinking that everything was on the mend, that my daughter was going great guns, improving at a wonderful rate. She had started doing half days, and then the odd full day at school, and for the most part I accompanied her, listening to my youngest daughter’s class read, so that I could be about the school premises, in case my eldest was suddenly unwell, something that was necessary given that she was coming off steroids, and might well have needed an emergency injection of hydrocortisone, something I’d been trained to administer. It was all working out okay, and the school were fantastic about everything, with both children and staff alike delighted that my daughter was once again able to show her face. From then on things improved even more, and given the fact that this summer has been the end of her final year there, in the last two weeks of term she managed to attend pretty much everything going on, and as you might imagine…………there was a lot. From school plays, to leavers’ services, to class parties, concerts, etc, etc, you name it, it was going on, and happily, she managed to attend it. We kind of got through it successfully, managing between us to have the odd rest morning. It was both sad that she was leaving, but fantastic that she could attend at all, given what’s happened over the course of the last ten months.

So the end of school came and went, and last week was the first full week of the holidays. Given how hectic the last few weeks at school had been for everyone, mostly we stayed at home, with just one day out at the stunning Moors Valley Country Park near Ringwood. We arrived nice and early, as always, getting almost the whole forest to ourselves, and were able to leave just before lunch, just as it was getting particularly busy.

And so on to yesterday. Unusually, my eldest wasn’t looking right, or feeling well from the outset. Odd considering when she went to bed on Monday night, nothing was out of place or wrong. She complained of her head hurting more (something we haven’t heard in months), of the light hurting her eyes, and of just feeling unwell. All she wanted to do was lie on her bed in her darkened room. Hmmmmm…………..not good! With her mother off work on holiday, and with us having planned to go out, needless to say we didn’t, but stayed in, taking it in turns to watch over her. About mid-morning I responded to an email from one of my friends. In it I predicted that we would at some point during the day, end up at the hospital. A prediction that, disappointingly, came true.

The usual course of events unfolded, something that at one point I seem to recall being almost a bi-weekly event. The local hospital were, as usual, great, seeing us straight away……nothing too much trouble. She managed to get to the eye clinic so that they could check the pressure behind them (albeit with a rather dubious driver pushing her wheelchair……..me of course!). The staff in the clinic were fantastic……fussing over her, and putting a smile on her face for the first time during the whole day. The outcome was that the pressure behind her eyes seems to have increased…………bugger! (This is the quickest way to test for symptoms of IIH, the condition my daughter suffers from – check out the wonderful IIH Support website if you want to find out more about it.) So after going back to the ward, and with the great team of paediatricians communicating with the neurologists in Southampton, our knight in shining armour informed us that she would be starting back on a course of steroids again. Not something we or she wanted to hear, but something that we’d already predicted would happen, minutes before we were told. Fortunately, we were discharged, although I have to say, it looked touch and go whether she would be up to going home, for much of our time there. So here we are, what feels like back to square one almost. My waking and sleeping thoughts still haunted by that day, my daughter being chased down by something unforeseen, me…….unable to protect her. It shouldn’t be about me……….I know. But once again I feel so helpless. You sit and wait, hold her hand, push her around the hospital in the wheelchair, find her drinks, try and comfort her in every way possible………..but it never seems enough. I truly thought over the last few months that things were heading in the right direction, and with a new school year, and more importantly, a new school, looming on the horizon in September, we as a family had hoped that things were all heading in the right direction. But that’s not how it feels at this very moment. I hope as the one medical professional we trust above all others said, that it’s just a ‘blip’, but it doesn’t feel that way, not now, not when things seemed to be going so well.

So I suppose all we can do is wait, something I really, really hate. As I sit here now, the illuminated screen of the computer lighting up the room, daylight gently filtering through the sides of the curtains, I wonder what the coming weeks and months will bring, haunted by memories of that fateful day, the tentacles from it that still have hold of my daughter. The bright orange shirt is tucked away with my hockey sticks, just out of sight over my shoulder. I wonder if I should put it on, face my demons, or perhaps never wear it again. In theory it should make me stronger………just as picking up one of my hockey sticks does, but somehow this feels different, scary, frightening somehow. Oh well, off to see if sleep can claim me for a couple of hours. Wish me luck!