In Your Smile,
Bring Me Laughter
All the While
In This World Where We Live There Should Be More Happiness
So Much Joy You Can Give
To Each Brand New Bright Tomorrow
Eric Morecambe and Ernie Wise “Bring Me Sunshine”
Seems there has been a solar eclipse in our house of late. It’s all felt pretty gloomy. Dank and sad. I’ve stubbed my toe and wanted to say F*ck This Sh*t on blunt objects. Blunt people.
RD, whilst being treated like the sun shines from his nether regions, is calling the shots on this. It’s amazing how everything that is normally chugging along in its imperfect balance can be capsized by an unhappy shipmate. Suddenly things go from challenging to insurmountable when you feel emotionally on the edge.
It seems to have happened post hospitalisation in January. As you may have already read, it started manifesting itself in school. ‘Unsettled’. Then ‘More unsettled than settled’. But despite my knee wanting to jerk and swoop in and bring him home, I knew we just had to work through this. And at home, things were still fairly rosy. Maybe, I thought, he’s actually developed the differentiation between school and home! He really loves us after all! When you have a non verbal child, you find that lots of people have very verbal opinions about their behaviour. We all love a bit of conjecture. Being Rufus’s voice, beyond “bring me anything with shiny, noisy, tacky buttons you buffoon” is stressful.
Meetings with his Occupational Therapist. Speaking to his teachers. Thinking. Thinking. Thinking. But then about a fortnight ago, he brought these shenanigans back as home work. He’s been master and commander with a foul mood. Screaming and shouting. And the big show stopper, head banging. We let a little bit of stimulatory head banging slide. Turn the other cheek and let him get his freak on. But this is different. He’s seeking out hard surfaces, sharp edges. He really, really wants to hurt himself. What must he be feeling to cause this outlet? I dare any bystander not to be rendered utterly helpless.
And yet, we may have discovered Rufus’s inner Diana Ross. You know what this all stems down to? What stops this? He wants a bloody drink. No Cristal or Moet necessary. Just a thumb of neat water. In your finest doidy cup. I’m fairly sure if he could click his fingers and say garcon he might desist with this diva like head banging. I really don’t want to develop notoreity for shrugging off the serious stuff, because actually, I’m making light. Whilst you would think I should be celebrating that my almost exclusively tube fed child has developed a thirst, that perhaps, his extreme oral aversion is somehow bettered, I know this is merely symptomatic. That his reaction is extreme. That this thirst overwhelms him.
And, like all true addictions, his love comes with a cost. We’ve not really worried about the safety of Rufus’s swallow previously, given that he’s not used it much. But now he’s gasping, you see how uncoordinated it is. He hasn’t got full mouth closure, some of it comes out of his nose, he can’t coordinate breathing and drinking. You wouldn’t serve him. We’ve been managing with sips at home, given the uselessness of the exquisitely named ‘Thick and Easy’. But of course, school can’t. He’s on the list for his videofluoroscopy, and I could bore you with the details, but coordinating getting a decent liquid thickener and selecting the right consistency (syrup or custard anyone?) isn’t an overnight win. So in the meantime, an association with a strict no drinks policy at school has left my boy all in a muddle. It reached a nadir this week, he’d bruised and scratched his face so hard it needed to go in the accident book. I know they were doing all they could, but how could they reason with him? How could we?
This darkness is suffocating. Closing my eyes to it all doesn’t stop it happening. I’ve wished myself elsewhere, particularly when we had to take an already stressed Rufus to a meeting to discuss the next set of testing for what they now think underlies all of his varied wonkiness, mitochondrial disorders. To the scrutiny. To speak of his labels- some things profound, others limited, as yet not threatened- whilst acting as though I’m discussing the state of the weather. Well, you might as well shut a pair of velvet curtains as well.
There’s the contacting, the chasing, the managing, the thinking. What happened in January? Trying to come up with theories. Doubting myself. I’ve pulled up at this Mother’s Day feeling as wrung out as my children’s well soaked vests.
In fact, I woke up this morning, and whilst one child wailed ‘ooooOOOOoooossss’ because we had misplaced one of her shoes, clinging on to my back and shouting in my ear for full effect whilst I attempted to give his lordship his precious nectar whilst he threw himself around in agony at his thirst and the not so dulcet tones of his sister, I snapped. I shouted at everyone. I went on a one woman rampage. Boom Boom Boom BLAH BLAH BLAH! And another thing BLAH BLAH BLAH. No I don’t want my chuffing Mother’s Day present. I want all this (wild hand gestures attempting to encapsulate EVERYTHING) FIXED. Done.
Luckily, someone took my hand on Friday. In fact, a few people did. RD has a new community paediatrician at school. She’d read his noted prior to the meeting. She had her own plans. She listened to my ideas. She tried to contact the people I had been chasing. She called me back in the afternoon to let me know how far she’d got. Supported by fantastic nursing teams, both at school and in the community, I felt supported. Lifted. That I could just be Mum a bit more again. Just get on with the worrying bit. And a chance to reflect. We’ve been here before with RD. Well, not this exact problem, but we’ve faced seemingly impossible conundrums and somehow come through, so I know we can again. Just a little battered and bruised.
In the end I had a lovely day with my little Ernie and Eric. Because when RD’s sun shines, and DD has got her dancing oos on, it gets no better. And I look forward to a brand new bright tomorrow. Was also weirdly grateful for an hour less too…