Saturday, May 12, 2012

"Bugger," said the Principal

She did, honestly. The Principal of my eldest's school. In an email responding to our latest news. You wouldn't get THAT in the UK. Imagine the OFSTED reports. I think you would probably be removed and sent to jail for that. Almost as bad as forging SAT results. But it was just what I needed to hear. Like a shot of whisky, or a nice cup of sugary tea. You don't want it all the time, but it's just right for emergencies.

I am in the Emergency Department of our local hospital, with my eldest, who can't walk. He woke up in pain and unable to move - so far, so normal. Usually I wouldn't bother bringing him into hospital but today it seemed worsening, it didn't ease as the morning went on and anti-inflammatories didn't help. In England we were told that these semi-regular episodes arose from his Perthes hip problem and I saw no reason to quibble. But the thing about emigration is that you don't have your entire computerised medical history with you, nor are you a familiar face at the hospital. I am used to being waved through "Yes, yes, Perthes Disease giving him pain again, home and rest, don't worry, see you again soon, how's the family doing, do you want us to reserve you a chair for the next time it happens?" But here I have to explain everything from the beginning. The doctors confer and come back to me. They don't think England has been handling it right. It looks as if there has been a misdiagnosis of some sort, or at the very least that the hip damage from the Perthes is too mild to be causing this level of pain. We are talking about family history, different treatment pathways. My boy, sitting in his SN buggy, demands "Am I gonna get better and walk again?" Yes, yes, I reassure him, looking out of the window at the glorious view. Across the bay is the volcano summit on which we stood triumphantly together last month. We walked all the way up. He had mild leg cramps, but overcame them and climbed determinedly, declaring as we neared the summit "I want to get to the top even more than I have ever wanted an icecream!" It was one of the happiest mornings of my life. Now I can hardly bear to look at it, wondering if it will be possible again. Bugger, indeed. I search out a cup of tea and drink it gratefully, waiting for happiness to hit. It doesn't. Oh DEAR. Things must be bad. I have another, with sugar. That works a treat.

I am sure that he will walk again, of course, these attacks don't go on forever, but what I don't know is how often these crippling bouts of pain will occur, and whether they are going to get worse. That's the horrible thing, because at least with Perthes Disease there is a clear outcome - your son's hip is damaged, it will improve as he grows, we must just treat him with care to prevent long-term damage until it does so. No reason to worry. So I haven't. But with the New Zealand opinion that this isn't a correct, or at the very least, not a sufficient diagnosis, we are back in terra incognita. As any SN parent will tell you, the pre-diagnosis stage is always the worst, when your mind races with nasty possibilities. Everyone has a unique talent, and mine is to invent the most preposterous scenarios and then find a way to blame myself for them. Whilst we wait forever in the Emergency room, I run the gamut of "and then he will turn out to have that horrible disease where you lose control of everything slowly and it will be MY FAULT because I wasn't grateful enough that he was only mildly affected by his Aspergers so God has sent me a REALLY AWFUL disability to cope with" to "But I can't have a physically disabled child, I know nothing about them. All I know is developmental delay. God must have made a mistake." "This is the direct result of the time I didn't give money to my friend's disabled child's wheelchair appeal." "God doesn't exist, there is no divine justice, and the rabid pink rabbits who run the universe have decided that they don't like me." After a few minutes, I recognise that I am inventing a God of such perversely reasoned nastiness that a rational theology of love could not possibly co-exist with Him - or a rabid pink rabbit - , any more than a skunk can hang out in a perfume factory or my children have a month without a medical or developmental crisis. So I stop inventing ridiculous reasons why this makes "sense" on a cosmic level - because of course it doesn't, illness and disability never does - and promise myself that wait to see what ACTUALLY happens, rather than inventing disasters in my head. I manage this for about five seconds and then burst into tears. Dear me, I need more tea. But I can't get one, because at this moment that the paediatric nurse comes in for a chat.

I have liked her until now. She has been the only member of staff who kept her head when my son demonstrated his pronounced needle phobia. It took three attempts, three doctors and two nurses plus me to hold him down in the end. In between the doctors conferred in the corridor whilst I shouted at them "He is going to go on screaming until you have finished, DO NOT WAIT FOR HIM TO CALM DOWN." The nurse hurried them into action and eventually we managed it with me on the bed, holding his head and trying to remember how he had screamed at the NG tube as a premature baby. It is easier when they are not old enough to shout "Muum! Muum! Stop holding me! Muum!" and you know they won't forget until the next time. But she was sensible and calm, and we got it through to the doctors that there really was no point reasoning with my son, we just had to treat him like a tiny baby and get on with the job.

So I like this nurse. But as we talk I get irritated. She wants to persuade me that my eldest is inventing his symptoms. Yes, OBVIOUSLY, children with Aspergers are brilliant at lying, and it is very likely INDEED that he has spent two years complaining of incapacitating pain that might mean we hold him down to take a blood test. About as likely as the universe really being run by rabid pink rabbits. I struggle to be polite. Eventually she says to me "All right, but then you need to be pushy and start demanding answers. Because this isn't normal. I think juvenile arthritis." And I realise that she has been testing me, making sure that it really ISN'T psychological before she comes out with what she actually thinks. The doctors admit they are baffled. And we are transferred to the local children's specialist hospital for a second opinion.

We go, and spend an uncomfortable night where my boy cries out in pain and the alarms sound everytime I start to sleep. I am surrounded by mothers of recuperating toddlers who are all engaged in a bizarre game of competitive disciplinary parenting. "Sit STILL in your cot," they hiss at the tiny bewildered children in a strange environment. By contrast, I can't be bothered to tell my son off when he is rude to me. He's had no sleep, he can't walk, he might as well ease the frustration by snapping at his mother. This raises eyebrows. "Oh I use Time Out, it ALWAYS works," said one of them to me pointedly. She has long blonde hair like a Disney Princess. I hate her. I tell her that my middle son can't bear time out and that all specialist and mainstream disciplinary strategies so far have failed. She looks at me as if I am talking a foreign language, which I guess in a sense I am. She explains how all her four young children are beautifully behaved. Then I hear her hissing to her husband on the phone "Then he must be PUNISHED! No treats today!" Her face is contorted, like an Ugly Sister. Heh heh. Time out not working so well then after all.

We go home, clutching our referral letters. He's walking again now, although still in some pain. I think about the wonderful walk up the volcano. It wasn't all easy, it was tough at points for him and for me. But the peak moment of arriving at the top was so wonderful, so joyous, it made sense of all the rest. That is the kind of challenge I like, not this guessing game. I think of a conversation that I had with friends recently, about not wanting to read upsetting highbrow literature. Well, yes, I think, I don't need to disappear into fiction to traverse harrowing emotional territory. I want escapism and happy endings. Right now my life is scary enough. Fiction needs to be reassuring, like that sugary cup of tea I had in the Emergency Department.

You fight your own fears, at times like this. The same as when my boy and I scrambled up the mountain. That moment when he complained of leg pain and said he couldn't go on. "Please try," I said, thinking of the complexities of arranging this magical day, "we can't come back and do it again." He walked for another few paces and the pain eased. "I am racing myself," he said later, "I have left a bit of me behind, down there, where I said I couldn't do it. That bit I have left behind." As we leave the hospital, I try to leave behind the emotional shock with the same determination that my little one showed, climbing up that volcano. Worries about Rabid Pink Rabbits and diagnoses will keep. There are practical things I must do. He is starting to get embarrassed at being transported in an SN buggy, so I write to our OT to ask for a referral to wheelchair services. I contact family to try to get precise details of diagnoses, gene markers, etc. My boy is brave and sensible and delighted to be walking again. I haven't told him that he will need another blood test this week. Bugger.

I am not going to be back in fulltime ministry for a few years. I agreed when I met with the church here last week that my family life was just too demanding for anything else right now, and the rest would have to wait. But when eventually God willing I do, I want to be the kind of priest who says "Bugger" to a family in crisis, not to make a point about how cool I am but because it is the right word to use at the time. I shall remember when I see mothers not disciplining their children in public that they might be doing the right thing, because their child is in pain and has had no sleep. I shall remind myself that no matter how stressed I feel it is not wise to ascribe events on earth to the Infernal Plans of Divine Rabid Pink Rabbits. And I shall also remember - as if I really needed reminding - how emergencies can feel an awful lot easier to handle by the production of a nice, strong, sugary cup of tea.

3 comments:

  1. So much to comment on ....
    Your son is a poet and a philosopher. What he said about leaving a bit of himself behind - he is a great thinker.

    About the pain and everything - new treatments all the time. They are even finding a cure for Parkinsons and people who were born blind.

    Generally - you know, C, your voice just sounds so much more positive in NZ than it did in the rhubarb centre of Yorkshire. Whatever the dire situations your boys put you in, I am getting the feeling that NZ is a better place to deal with them.

    ReplyDelete
  2. Yikes. Fingers crossed it's something imminently grow-out-able or treatable (and the treatment doesn't involve needles).

    ReplyDelete