Dear boy.
I watch you sprawled on the carpet, colouring in a geological map. You are not sure what period the crystalline Fiordland rocks of the South Island belong to, and nor am I. You wriggle, a little, and ask how much longer: how much longer till you have done enough work, whatever enough is, which neither you nor I really know. (I work on the basis that ten minutes after I should have stopped, you will begin to rebel. I try to avoid reaching that point. That's it, really).
I chose geology for our first home-school project, my son, partly because I knew nothing about it, and partly because I rather fancifully felt it might be good for your soul. You have such a lot to contend with. Your body has let you down so dramatically. Such a shock to you, to us all. At a time like this, who would not question the goodness of creation? The greatness of life? "If I don't get better, I will still love God," you told me earnestly, just out of hospital. That's your decision not mine, my love, but I wanted to give you a sense of the sweep and grandeur of creation. I wanted to show you the smallness of us, of this moment of pain. Of the bigness of the Earth, the formation of mountains, the sea. Find something to marvel at, and through that sustain your interest in the wider world, in the greater universe. In Love, perhaps, if you feel drawn that way.
But sometimes even this abstract conversation checks me, so that I have to hold back the tears: when we talk about earthquakes, or rocks disappearing under the earth's crust, or being crushed in the deep of the earth, to bring out new forms. I look at you, lying sprawled on the carpet, and I feel strangely sorry for those rocks, for the pain they might feel as they are crushed, pushed aside into nothingness in the impersonal drama that is creation.
Rocks don't of course feel, but I know that you do. Is it fanciful to think of you as crushed like a subterranean rock, sprawled on the floor beneath a mountain of pain? We don't discuss the pain or hardship much. You do like painkillers - who wouldn't? - but you understand that I can't give them to you all the time. We had to talk about it yesterday, though. As I prepare my application to charities for the ramp, I know with the hard-bitten journalistic side of myself that a few words from a child are worth a hundred from an O.T. or a mum. When I prompted you, this is what you said. “It’s incredibly hard. I have to get real sore and I get sore later in the day. Sometimes I use a box to sit on and slide down but it doesn’t work that well. It took me nearly over ten minutes to get down. When Mummy says Hurry up it feels hard. I don’t always walk down the stairs. Sometimes I slide on my bottom which hurts even more. Also I crawl down. It just feels awful."[If we had a ramp] I would be able to go down much easier. It wouldn’t hurt that much and life would be so much easier. “
I hope I have done the right thing, by asking you to articulate your life. I promise you that no matter what, we will find a way: if the charitable sector and the public sector both turn a blind eye to your pain, we will find a way to install that ramp. I wish it were otherwise, I wish there were a cure. But there isn't a way around this time, any more than there is a way to change gravity or isotasy: mountains will rise and fall. Seacoasts will erode and advance. Children will be in pain, and their mothers will grieve for them. That is the way this world, this universe, is.
Rocks bear a magnetic imprint of their age. This is new technology, but since geology's birth with William Smith, layers of rocks have been dated by simpler means: fossils, comparisons to other rocks. Two mountains can look alike, yet bear a radically different geological history. Two children can lie on the floor to colour. One can be relaxing after school, collapsed in a comfortable slump. The other can be focusing all their energies on staying at work and not asking for more pain relief. They are lying still because it is too sore to stand. Yet both children look the same. You have to dig deep into the mountainside to find its geological type.
Like the magnetic history of rocks, you will always bear the imprint of this time. I would it were otherwise, but I know you are old enough to remember, even if you do heal as the doctors hope. Daily, you are being changed. By the pain, by the countless conversations with doctors, by the missing school. Like the metamorphic rocks you are being squeezed and heated to a new form. There is a deep maturity coming upon you, which is both reassuring and unsettling. Sometimes I feel that I am talking to an eighteen year old. You have experienced more than you should, and it comes out in your occasional depth of wisdom, when you sound like a man not a boy.
I am not sure that this time is having such a positive effect on me. I am squeezed hollow nightly by the effort of getting through the day. My poor husband has to pick me up nightly, reassure me that I am doing a decent job. But oddly, the worst days are not when I am with you, worrying about whether it is time to make chocolate and what colour we ought to choose for Devonian rocks. It is the days when you are away from me and I wonder how you are. Often I arrive at school to pick you up. "He's fine," everyone says, and it is true, you are standing, you have run around. But then the story of how you really feel inside spills out. Mainly, you have been sore. Perhaps you weren't always sore but it is the pain that you remember of the day. And that is why I worry, because I am not there to distract you. To provide a soft, gentle landscape. Of colouring-in and interesting stories and maths puzzles. Not really to educate you, but to lay some soft earth over the jagged rocks of your pain.
So it would be good to have a ramp, if only because you would have something else to think about, a small victory against the difficulty of today. It would be good to have more work to do at home, more to occupy you. Let us hope that the health school finally get their paperwork and you can be enrolled, so that the pressure is not all on me. Also, I'd like you to get better, but that I recognise is a bit unrealistic for now.
I love you, my son. I love you the way you are, painful and anxious: I love you when you are angry because of the pain. I love you when we sit cuddling on the sofa, and I love you when you are running up the hill away from me, to school or to anything you can do with strong legs. When you look back on this time as an adult, I hope you will remember - not the details of the work we did, or the silly little experiments to pass the time - but a general sense of purpose. That you were not left just to occupy yourself, unable to move from the floor.
Because you are worth all that I put into you. You were born prematurely, and there was a strange era when you were fed by tube and we all wondered if you would be OK in the end. I had to battle to breastfeed you at all. No one puts that on their CV: "succeeded in breastfeeding premature baby with no suck reflex." But I'm still glad I did, that I did the best I could. Because you were worth it, you bright shining laughing baby, who smiled early and grew into such a bright shining laughing young man.
One day you will climb mountains of some sort, physical or mental. I am sure of that. For now, this is your mountain, and mine too. I climb it daily, with you at my side. And that is why I try to make time to ensure I enjoy it, that we pick topics like geology, that will frame our struggles together in a greater landscape. We may not have a cure for now. This seems to be our mountain. The route is hard at points. Let us try to make sure that we enjoy the view.
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