I want to believe in fairies, this week. I want the improvements that we have seen to be more than a random good patch, I want them to be the result of the new medication we are trying. He's been on it for six days, and he's had six good days. Six days where he could move freely, where he had brief episodes of pain but none of them incapacitating him for more than a few minutes at a time.
It is tantalising, like being shown a brochure of a foreign country marked "health." And that is why I am finding this week harder than any of the previous weeks. Because I so want it to be more than random chance, but I know it may well be. We have had good patches before. And adults don't believe in fairies. But I don't want to be an adult, this week, wry and coping with adversity. I want to be a child who believes in the magic of medicine to cure people, especially little people, those who ought to be too young for endless pain.
The little people, of course, is an Irish way of referring to the fairies. When I was a child I watched my Irish aunt draw the sign of a cross on the sodabread dough before it was placed in the oven. I asked why, and she said gently that it had been done for a long time, and didn't do any harm. Much older, I read about the sign of the cross as a protection for the goodness of the bread, lest it be stolen in the oven by the little folk. The form of the bread would remain, but it wouldn't nourish you. I feel sometimes as if my son had the physical strength taken out of him when he was sleeping, the way my aunt's ancestors feared would happen to the bread.
So to see him this week, strong and running around, almost all day everyday, has been breathtaking. So beautiful, and so vulnerable. I don't want to overstate it. He has cried at the pain of descending our, excuse me, fucking steps. He has needed the SN buggy to get him from the lounge to his bed. He has winced with pain climbing the hill, and refused to join the walking school bus because he was afraid it would be too sore. But these have not been all day every day. These have been - dare I say it? - remnants of the pain he was in. I am afraid to discuss it with him, afraid to jinx it. I am superstitious, the way my Irish ancestors were, unwilling to discuss the fairy folk in case they attracted their unwelcome attention. But there have been a few moments where I dared to believe in fairies, dared to believe that this improvement might be real. And then I felt the terror of hope, that shocking deep wave of uncertain light and shadow. Has the sky cleared or are we still mid-storm? Is this the stars we see or a desperate hallucination? In some ways it is easier to be in utter darkness. You reassure yourself that it is OK to be without light, that you can exist this way. Then you are offered the dream of daylight, and all your carefully built defences against despair plunge into nothingness. Because you realise how much you want to believe in fairies, want the magical cure. And you have to simultaneously steel yourself, and remind yourself that you will all survive either way, that this is real life, that there are no quick fixes or easy answers, that this medicine may even help a little, but it is not going to be a total fix.
And that is probably the true meaning of hope, which is a virtue I have battled with this week. "Hell is hopelessness," wrote Moltmann, and "to live without hope is to cease to live." I have hope for my son, whatever the medicine does or doesn't do: hope for the institutions working with him, that they will treat him gently, kindly, with respect. Hope that the sense of institutional bullying we encountered in a meeting this week is unusual, a once-off. Hope that we will have strength, that he will have fun. Hope that healing will occur, of whatever type is possible within the confines of his body: that whatever happens physically, he will be emotionally strong, calm and happy. That he will find joy in life, in love, school, home, friends. That whatever is going on physically, he will have the strength to deal with it. That he will not be emotionally scarred by the experience. All that I pray for, and all that is a prayer for strength, for hope, and yes, for healing. Healing can take many forms, it does not simply mean a child out of pain, a child able to walk and run freely, play sport. It can simply mean acceptance, the courage to know one's inner strength and physical limitations. I do pray and hope for emotional healing, in whatever form God chooses to send.
But oh, this week, it is hard not to have too much hope for the physical kind of healing, too.
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