19^th July 2009

Kevin, my partner, said that people talk of Limbo… now he knows where it is and what it feels like… this waiting for answers no-one can give, this praying with all our hearts and not knowing what to pray for. But I can tell you that Limbo stands before the Gates of Hell.

Because of the extent of the known damage and the possibility for any kind of recovery being so tenuous, we have prayed for his release. Because we love him and want his bright presence back, we have prayed for a miracle. Our prayers are poised on a knife edge and the blade cuts very deep.

Our deepest nightmares… we have them every night, (I woke at 4 this morning screaming with it)… are that he should be buried alive in his own body, aware but unable to convey that awareness or act for himself. That once the physical injuries are healed, he will be stuck here with whatever is left of himself.

We are in Limbo, waiting, hoping and fearing, unable to do anything.

Yet, today I wiped the tears from my son’s eyes as I did when he was small, I watched him… for the second time in his life… take his first breath, and I felt him holding on to my hand.

I can tell you that this, this is Hell.

As the drugs have begun to clear his system, he has begun to regain a physical wakefulness that shows no medical sign of awareness. We are assured it is all reflex action and is, in no way, an indication of consciousness; no iota of real hope has been given. It is purely a physical, absolutely meaningless, reflex action and is definitely no indication of possible recovery. We understand that and, bizarrely, are trying to keep very negative and believe it.  We understand that the current situation is no indication of anything except that some of his nerves are still capable of initiating movement… even though it may not indicate that there is ‘life’ in them.

And yet… when we got there, Nick’s eyes were open and blinking. The left eye more than the right, but blinking. He had tears running down his cheeks… though the nurse said no, his eyes were just watering. So I dried his tears. The joy in being able to do something, even something so small, for my son is indescribable.

His tongue is moving slightly, looking to the eyes of hope as if he is trying to lick the dry lips, so sore and swollen from the ventilator and feeding tubes. There are tiny facial movements, a lift to the eyebrow and lip. His head moved side to side.

I held his left hand… there has still been nothing on the right… and his thumb twitched. I spoke to him, telling him again of his choices, explaining that he was safe and loved, trying to reassure him. His arm moved and his eyes blinked wide. As I tried to withdraw my hand from his to dry his tears, he gripped my fingers.

Every time I tried to take my hand away, he held it. Then, impossibly, as the doctor switched off  the oxygen input, he took a breath. Then another, all the while gripping my hand. When I told him I’d have to leave for a few minutes, he held on even tighter, and when Alex spoke to him, his eyes blinked stronger and more rapidly.

Coincidence, we are told, and we are telling ourselves that too, doggedly, gritting our hearts’ teeth. Determined not to give in to hope, trying desperately to listen to the logic of the medical staff, to their knowledge and experience.

How, in the name of all the Gods, can we not hope? There is such joy for us in seeing this… all the while being assured it is nothing… and also such fear for him.

Yet there is no medical sign of any kind of awareness, purpose or reaction. His pupils still react only minutely to the doctor’s light and they do not follow it. None of his machines register any kind of increased activity, other than what is to be expected without the drugs. His heart rate increased though, to 138 beats per minute all day. Beating so hard it moved his whole body and shook the bed. His temperature keeps rising, though he seems now able to perspire.

He is initiating each breath, so his monitors look wonderfully, humanly irregular. The ventilator ensures he finishes each breath, which he cannot do for himself, at least for now. He will not show any sign of conscious movement with the nurses testing, does not respond to their demands for movement, apart from coincidentally, and yet appears to respond to us… though that too is probably coincidence and the wish in our own hearts, reading more into random twitches than is there.

We are desperately clinging to the sanity of facts and trying not to read too much into these ‘random, reflex actions’. We want to see, so much, the first signs of recovery in this, yet we know that for the next week or so, his life hangs in the balance. The doctors will assess him as the drugs clear his system, and will decide whether or not to turn off the ventilator, based on the extent of the brain stem damage letting Nature take Her course. Medicine will determine the extent of hope.

We are being ripped apart by our need to believe he can do this and come back, however long it takes and our desire for him to be allowed to go gently, so he need not suffer further. I am so very afraid that his tears spring from inner awareness at a level the machines cannot measure. Even with miracles, it would take at least 18 months of rehabilitation to see what Nick will be left with.

We had all, just, begun to accept, now our emotions are being blown apart and exposed to every imaginable pain and our nightmares are all for him. Alex is so afraid for Nick, that he might be trapped in there, locked in that empty room, waiting for us to reach in to him, but unable to reach out to us. So are we all.

This morning, at the ungodly hour I woke screaming, I called the hospital… to be told again that he is ‘stable’…I am really beginning to hate that word…

The modern medical miracles of ICU prevented him from dying on the day of the attack. I wonder sometimes if medicine goes too far in its determination to save all life at any cost. The past two weeks have been a nightmare, the next few days will shred our hearts, resisting the hope that love makes inevitable, praying that my son is still allowed to go or stay by his soul’s choice and with dignity.