This afternoon we all bumbled off to Hospital, with me silently dreading One Discharge: No Appeal. That… didn’t happen.
Totally didn’t happen.
Our consultant Paed was drowning in work and had subbed out half his clinic to a locum consultant: the delightfully named Dr Pal. And she was very, very nice. Harry was already in full melt-down by the time we got into the exam room, and had already thrown himself about the waiting room in a frenzy, putting two fresh lumps on the back of his head and another bruise DIRECTLY ON TOP OF his existing shiner.
Incidentally, is that purely a UK colloquialism? A black eye! Here, have another photo, with this morning’s bloody lip featured for good measure (fell off the padded piano stool straight onto the exceedingly UNpadded square wooden stool that he insisted go there, in defiance of safety. I moved it twice and he went bananas and hit me both times so eventually I just let him leave it where it was. Whereupon he promptly crash-landed on it the moment my back was turned.) along with the crusted snot, neither of which he would permit me to wipe.
Where am I? Oh, yes. The toy box in the corner distracted Harry sufficiently (and he fell over on the way across the room! For no reason! She noticed! Hooray!) for me to give a very truncated precis, and I had just told her that Harry’s behaviour had me in tears most days, when the toys lost their appeal and his hysterical shrieks started up again. He threw a toy car across the room like a rocket, and I’m pretty sure the Dr shifted on her chair ready to take cover behind the desk at that point, because it was blatantly obvious that he was planning more missiles just as soon as he could grab something else. He calmed down briefly when shown some lego, but soon decided that it would look much better embedded in Daddy’s eyeball. John eventually just had to sit and hang on to him for grim life in a sterling effort to stop him dashing his own brains out, and the next 10 minutes of our conversation were surely audible along the corridor because we were HAVING TO SHOUT to be heard.
After this, John decided that enough was enough and carted Harry outside in search of somewhere softer; there was a wincingly near-miss with the doorframe when Harry violently threw his upper body backwards the instant John loosed one hand to turn the doorhandle (a scenario that has drawn blood from Harry on more than one previous occasion) followed by the sounds of hoarse screams fading slowly down the corridor.
Dr Pal said …well, a lot, really. I loved her from the moment she asked me – without a trace of irony – ‘If I had a medical background? No? You understand the clinical issues unusually well’. I glared at John like a Medusa, and I hope he knew that if he had even so much as shaped his lips into anything that looked like the first syllable of ‘Internet’ or ‘Google’ then he wouldn’t have lived to see tomorrow’s dawn. I fell in girly love with her a little more when she said ‘I can see you’re going through hell. This is certainly extremely challenging behaviour.’
My lip immediately started to quiver (as it naturally does when you’ve been feeling all along that you are a teeny bit entitled to feel sorry for yourself but no-one is actually Seriously Getting It apart from you and your innernet buddies, so you haven’t really felt fully justified in wallowing in a mudbath of Waaaah! and you’ve been quietly keeping a lid on things, rather) and my inner Stiff Upper British Lipness (whom I picture as a particularly well-moustachioed Sergeant Major) was obliged to roar at me imperiously; something along the lines of GET A FUCKING GRIP ALREADY! followed by DON’T YOU DARE WASTE TIME BLUBBING JUST BECAUSE YOU’VE HAD A SMIDGEON OF SYMPATHY! and JUST BECAUSE THERE’S A CHANCE THAT SOMEONE WHO CAN DO SOMETHING ACTUALLY AND FINALLY UNDERSTANDS! It was a toughie, but Sergeant Major won, and I retained the holey and cleanliness-compromised emotional cloak that I term my dignity.
She listened to the lot: trainwreck pregnancy, premature birth, neurological worries, mobility problems that no-one can see except the people that, like, actually know him, his near-complete absence of speech, his sensory quirks and oddities, and his dreadful, dreadful behaviour and how it does – and does not – manifest itself. She listened with amusement as I dryly described alarming our regular Paed with my proffered diagnosis of mild ataxic cerebral palsy.
And then she told me – and it’s still ringing round my head – ‘Your fears are valid.’
She is taking this seriously. Someone is finally taking Harry seriously. This is the first time that I’ve genuinely known that someone isn’t blowing smoke up my arse.
The first thing she has done is fax an urgent referral to the community paediatric psychologists. She explained that there are painfully few – read, no – magic wands they can wave, but they can certainly help support and advise us in our management of Harry’s anger and frustration, whatever its cause. Which would be balm, because John and I are certainly not singing off the same Tantrum Management hymn sheet currently.
That’s the whole nine yards.
She explained that our regular chap may want Harry’s psychology results before he oks it, and suddenly I felt extremely grateful that Harry’s Paed is a very cautious chap who probably thinks there’s not much wrong with him. I hope he’s right.
Despite the fact that I’ve been jumping up and down and squeaking earnestly about brain damage (to any medical professional who’ll stand still long enough to listen) for the last couple of years, I’d kind of got used to being considered this paranoid and eccentric crackpot mother who has a bee in her bloody bonnet.
I’d scooched out a comfy little place to sit, and the view from here is… sort of alright, you know? Suspecting but not knowing.
The next step towards knowing actually involves shoving needles and drips in my struggling little boy, filling his veins with cold, potentially deadly drugs that course their way into his tiny, brave little heart (only a few months healed of its hole) and head, temporarily shutting down the vibrant, vigorous, energised, enquiring, affectionate, beauteous personality that is my son and rendering him limp, absent, forlorn. Unreachable in his darkness. Alone. Unmothered.
All anaesthesia carries a risk, and Harry’s middle name has never been Lucky. If he didn’t wake up, I don’t think I would watch another sunrise, either.
John’s gone quiet; he’s not keen on the idea. We have to ask ourselves – and them, at length – what the possible benefits of having a clearer picture of Harry’s clinical diagnosis are. It’s not an absolute: people with very obvious neurological impairment can appear undamaged on MRI. The brain is an unimaginably complex piece of kit and, even if we establish that Harry does have damage, and the nature of it, I’m not too clear yet about how that understanding will help us improve his function. So many questions.
Tonight, I really miss being the crackpot mother. I think it rather suited me.