Or whatever that disinfectanty smell is in hospitals. Where I seem to spend most of my 2007 thus far. Back today for an entire morning checking up Arthritic Son. Typical. Everyone else gets to take their kids back to school, I wind up at the Norfolk and Norwich in a waiting room with no magazines, no windows, too many people and a couple of ten year olds trying (badly) to parent a Baby on the Edge.
The only entertainment to be had was watching an undercover member of the Mummy Mafia as she patrolled the waiting room Properly Entertaining her own fat, smiley toddler and shooting surreptitious, raised-eyebrow-knowing glances at the oblivious couple. I know her sort. Years ago she would have terrified me, with her make-upless face, and her sartorial statement that she doesn't really care what she looks like because Being A Good Mum is More Important ACTUALLY, but I'm wise now. Oh yes. I know that she's just Smug Mother of One. She's done the baby stuff and emerged relatively unscathed with Smiley Properly Entertained child who's fully used to being the centre of the universe and having parents whose mission in life is to make him happy and stuff him with as much breastmilk/omega 3s/organic produce as he can humanly take.
So, I'm sitting there, feeling really sorry for the teenage parents, feeling really sorry for the purple baby in designer clothes going hoarse in his car seat or being passed from disinterested knees to having his back pounded by his dad, bored rigid while Arthritic Son plays the resident gameboys and getting my kicks by imagining the MM with her second.
Preferably, I'm thinking, with an evil leer, a second boy.
Not even a scone basket with which to cheer myself up - which is actually no bad thing. The scone habit, the fact it's just been Easter and the Contact Eating Disorder I've developed while Recovering Husband gorges to regain his lost weight, have culminated in a rather unattractive stomach/thigh event. A sort of 'hey, look I'm suddenly five months' pregnant' type of event.
Anyway, back to Arthritic Son. It's now 2 years since he was first diagnosed, almost 2 and a half since I first noticed that my 6-year old had looked particularly unwell for an entire term. I was talking to his teacher one day after school - she'd called me in to tell me he was having problems concentrating in class - and he popped his head up just beside her elbow, and as I glanced at him I was struck by how pale and sickly he looked. It was one of those horrible shocks you get when you see someone every day but suddenly realise they look quite dramatically different - not right, somehow - an image that engraves itself right there and then on your mind forever.
I knew, just knew, there was something wrong.
He was tired and snotty a lot, complaining of feeling ill a lot that Christmas, which we just put down to the weather, to the full-on nature of the winter term and school Christmases (God, when did THAT start happening? We'd have died under that kind of pressure in the 70s...). When he started limping in the mornings and complaining of knee pains, we put it down to growing, sleeping funny, damp weather - anything to explain what seemed pretty, well, unexplainable. When one knee puffed up, I took him to the GP who told me it was probably viral (oh for a quid every time I've heard that in my life) and gave me some ibuprofen.
A week later, when he burst into tears after school for being shouted at for not concentrating, too scared to tell the teacher it was because his knees hurt so badly while he was sitting, I went back. This time I was told it was probably 'housemaid's knee', which came as a bit of a surprise what with him being 6 and never having scrubbed a floor in his life (I may be many things as a mother, but I've a way to go before I get quite as bad as a character from a Dicken's novel). And on it went. More trouble with school, more fighting with teachers and GPs, more tears, more pain and more encroaching disability for my son.
Eventually, several months after we first saw the GP, and with the other knee now swelling and a child who could no longer get out of bed or the bath without help, up or down the stairs, or, in fact, walk for two hours every morning, we got referred. And I mean referred. I had a phone call at 8pm from the GP at home telling me he wanted my son in the N&N the following morning for tests first thing. A whole day of them.
From there, we've had a long journey. From diagnosis to change in diagnosis. From knowing in myself the arthritis was spreading, to locking horns with his consultant who told me that it was probably growing pains and I should 'play it down' (from a kid who never 'played it up'), to being proved right four months later. From one knee being affected to both knees, both ankles, wrists, fingers, toes, jaw, shoulders, neck. From simple anti-inflammatories to steroid injections to more steroid injections to different drugs, leg splints at night, strict physio regimes and eventually, a year ago, to the drug that turned everything round - methotrexate.
For those who don't know, this is the same drug that is used, in higher doses, for chemotherapy as it suppresses the immune system and arthritis is an auto-immune disease. It's not nice, it comes with a list of side-effects/contraindications two pages long and you have an hour's appointment with a specialist nurse to talk about it before you sign on the dotted line. It also costs a lot, so the NHS are pretty specific about needing it before they hand it out. While he's on it, we have to be pretty careful. For example, it makes him photosensitive, he can't have immunisations, or many antibiotics, he has bloods monthly to check liver, cell counts etc. We can't go somewhere malarial (just as well it isn't an option) and chicken pox, if he hadn't had it would be a real problem. There are also complications should he get a chest infection (great in light of the recent chest plague suffered by Sick Husband).
We still don't know what will happen with the arthritis. We don't know if he'll have it when he's older or whether it will burn itself out before he hits his teens or twenties. We don't know if it will flare up again should he catch an unpleasant virus (we're supposed to keep him away from outbreaks at school), or if something else will trigger another attack, if he'll get it when he's older.
All we do know, thanks to mornings like this, is that he's doing OK. His bloods aren't great, but compared to what they were, they're good. His physio is really pleased with his legs - we've spent two years trying to straighten out his knees thanks to the damage caused by the disease - and she feels he's fit enough to maybe leave with an 'emergency only' follow-up after this summer. Which is great news.
We've been a long time getting here. There are many, many times I've sat and cried for my son because of his pain, because of what we've had to do to help him. I'd gladly have taken all his pain myself and trebled it just to watch him be like all his friends, like all my friends' kids. I've wanted to literally kill some of my friends when they've told me they've kept their kid off school because they 'looked tired' and I've taken my son, hopping, limping, crying with pain, because that's what we've been told to do. I've had other mothers who had no idea of what was going on look at me, with my make-up on and my hobbling, crippled-up son, like I'm Myra Hindley's sister, just dumping Tiny Tim off so I can go and get a manicure. I've learnt that you can't fight every battle.
I could sit and cry now because my boy is virtually 'normal'. It might be drug controlled, but hopefully that part of the nightmare is over for him. Pain is almost not a part of his life anymore. He doesn't have to be the Guardian of the Den in the playground because he can't run around with the others, or not join in with the football, or walk around in lessons, or take in a cast to get his mates to sign it so that we can try and teach him about acceptance. He doesn't cry or moan when I go to get him and tell him we're walking, we don't have to have the conversations on the way home about how important a role Guardian of the Den is (think Hagrid, I always told him) or at what point of the evening physio gets done (it's weekly now) alongside homework, which is, I agree with him 'totally unfair'.
I can be more of a 'normal' parent now. I'm not looking for how much slack you cut because the kid's got a lot on his plate already, or is in pain, or feeling rough due to a new drug. I don't need to watch him like a hawk anymore, always on the case for new evidence of the disease spreading, or side effects, or wrongly working joints. And I don't need to fill in those godawful disability living allowance forms that ask me to specify how long - in minutes - he needs help for during the day, or in the night, or going to the loo, or getting out of the bath... I can breathe again.
I've learned a lot of things throughout this journey. Too many to go into here. But I've learned one thing above all, all you mothers out there. Never, ever, doubt your own gut feelings about your child.
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