Have you been braced on the edge of your seat? Well, Rufus is extremely clever. And here is for why. I promised you a wordy follow up, some notes loosely jotted down to cobble together to talk about life in the Undiagnosed. Again. No, but seriously, it was there to explain my blogger’s holiday. Why, all of a sudden, I’ve actually been too busy. So Rufus thought he’d only go and make me even busier. During a routine clinic follow up, that actually wasn’t so routine, as it was the one that would show us the shape of his brain otherwise described as MRI results, he decided to take it up a notch. Take his temperature up a few degrees too much. And end the already very long day after three appointments with his first seizure. And another one after that. He pieced together the jigsaw for me. So not only do I write this blog for him, for team D, but sometimes he helps write the posts. We’ll come back to the seizures and how they fit in to this puzzle later. I am one for a cliff hanger after all now.
But what’s kept me right? Not just the house move with two small children and wading our way the many a destruction manual for a seemingly endless list of new flat pack furniture. But moving house is part of it. Rufus’s list of equipment needed has suddenly multiplied, and creeping into our living space. I was struggling to carry out his therapeutic exercises in amongst his aids for living cave. Throw a baby growing and on the move too quickly sardines suddenly looked roomy. So we took the plunge, and I found a house when I last had a break. That respite was afforded was when Rufus was last in hospital. Says a lot, no? You see, if you look at the Wood For The Trees Pt 1, and the black and white draft, you’ll see a list of things I frequently have to tell professionals about my son. I have to tell them he his something of a burden in order to get him the things he needs.
It goes a little something like this. You get the blueprint. You, at some point, find some acceptance in that. I’m not saying that doesn’t falter, but you grit your teeth and live with it. Love it. Fight harder for the reality of a new life that you weren’t expecting.
A whisper “my son is disabled”
Right, apply for DLA.
Fill in a form of all that he can’t do. I’m sorry, what did you say? Can you back that up?
Ahem, “my son IS disabled”
OK. Awarded. Right, what next?
Another whisper “My disabled son needs some things to help him. Us”
Yeah, like what?
“Um, what can I have?”
No, what do you NEED?
“Well, a chair for the bath. A proper chair. Someone to at least talk to me about it”
I’m sorry, I didn’t hear you. I faxed someone and they could care less. They said he doesn’t meet their criteria.
Bolstered. Angered. “Alright, I NEED them. HELP (please)”
And it goes on like that. For near on everything. Shy bairns get nowt in this world. So not only are you expected to become totally at ease with the sadness of the child that Can Not, you are expected to talk about it with a steely look in your eyes. You’re expected to chase people, phone, ring, email, fax (?? in 2013 ??) them and shout “MY SON IS THIIIISSSS DISABLED” like you’ve just caught a prize winning fish.
You’re also seemingly expected to point your moral compass due North. To embrace this life. And listen, I really do. But house hunting when your child is seriously ill, that’s something of a challenge. And I am not Anneka Rice, I have never, oh no wait, I have worn a jumpsuit. And struggled with getting back into one after going for a wee whilst drunk. But I digress. When Rufus is ill, and by god this winter has not favoured him, I wish for an escape button. I wish I didn’t have to coordinate care plans in hospital, chase nurses, ask for clean sheets. Ring for attention and wait for seemingly a lifetime for his feed to be taken out of the fridge. Do the maths and calculate that actually that would be a fluid overload. But here’s the hard thing. I wish my boy could cope better. And I realistically am not sure where breaking point is or what it truly looks like but I think Wolf and I have teetered there. And bickered about it, most likely in Ikea. I wish I didn’t always have to repeat Rufus’s therapies over and over and over again for him to learn. It’s a love/hate relationship. When he learns something new, my heart literally soars. I can’t describe it. But I hate that it’s so hard for us all, and I worry if he’ll remember tomorrow. I’m not supposed to admit that. But occasionally my compass goes squiffy, and I think, fuck this is hard, my cup runneth over with love for my child but there’s only so much I can take. And just when I think I really wish this would all stop, I realise I am powerless to it all.
So what then. Respite. Again, a whisper. (Scroll up, lather, rinse, repeat). I ended up taking Rufus with me to view the Saturday Club respite scheme having being somewhat thwarted on the phone as to my options. Like the prize winning fish anology, he was snapped up straight away. Ouch. And then I get a follow up phonecall two weeks later “I’m sorry Mrs D there’s no space for Rufus on the Saturday Club respite scheme”. “That’s funny, because he’s now attending it.” Yes, seriously this happened. You see, he’s not easy to describe. There’s not a nice parcel to wrap him up in and allow someone to visualise how to care for him. This is how a lack of diagnosis makes you invisible. Not invisible, but difficult to picture. Appropriate for a child with a cerebral visual impairment. We know in the future we’ll be looking at, and fighting for overnight respite. We will all need that, us Ds. We have DD now. She’ll need some Mummy and Daddy D and her time.
So I’ve been a little busy, just coordinating. Shouting louder. LOUDER. LOUDER UNTIL I’M DONE. And then feeling guilty/remorseful/just dog tired. And back to the cliff hanger. This week, yesterday. The day of the seizures. There is something that without a diagnosis you learn to cope with. The questions. “Have you noticed this yet?”. Waiting for something new to manifest, based on guesswork. Rufus’s brain, crafted as it is, doesn’t come from the same mould as ours, although if you look at pictoral slices of it, it only shows ‘insignificant changes’. So, most clinics, meetings, phonecalls. “Have you noticed any seizures yet?” because if his brain isn’t firing all the right messages, maybe it’ll start firing some to make his eyes roll up, his breathing become laboured, his limbs jerk and him start frothing at the mouth just when you’re innocently shopping for some glasses for him. Maybe it’s shock that’s making me Deal With This through light humour. Because I wanted an eject button when it happened. Instead I had to throw mini D at an optician and scream for a nurse. ‘Luckily’ we were still in hospital. There were witnesses. But this left me in no doubt.
We’re left watching and waiting. After trying to get his 40.1 temperature down even though he was only in a vest having thrown one up earlier at 39.3, we were rushed through to A&E, with a nurse acting as sherpa for his notes now definitely weighing more than him. ‘Luckily’ Rufus had had his bloods and a chest xray done earlier in the day so we only had a mere hour to wait until someone took any interest. In hospital time this is practically supersonic. I had to get a fractious baby to her own bed so I left my boys, after the obligatory ‘mums know best’ chat with the doctor. Wolf had missed the first seizure, having gone to pick up eye drops for the boy who’s apparently scared of someone nicking his favourite cot toys as he sleeps with his eyes open. He didn’t miss the second one. When he phoned to report it there was a wobble in his voice, and admission of fear. But he had spiked another temperature. And his white blood cell count is elevated. And his stomach has started churning out dark red aspirates. Or tummy juice to the layman.
But here’s where a parent of an undiagnosed child can empathise. Whilst I was acting cool, casually discussing Rufus maybe having absence seizures, inside I was screaming PROVE ME WRONG, and discovering that with all his complexities we may never come to a conclusion. So having been rushed back into the eye hospital the opthalmologist in the kindest way said “maybe this answers your questions.” Even a febrile seizure, that in any mainstream child would be dismissed as that, cannot be dismissed. It might be something, something new to act cool about.
And mini D, she did something spectacular today. Something we try to work daily on Rufus achieving she just did. Just sat there, in his cot with him. Eyeing him up and down with her constant searching, interested look. Gummed his knee affectionately. Just sat there. Steady. Before she decided to move onto eating the cot bars. And I’m sad that this didn’t get celebrated in the way it should. A photographic snapshot overshadowed by her big brother’s poorliness. What did you say? You NEED respite?
As if to strengthen the point, Rufus is engineering it so it looks like we’ll spend the first Undiagnosed Day in hospital. He likes to come correct. So share this post, this blog, and the others of which are linked up. Wear pink or blue. Show your support. Take photos of yourself and share. Without SWAN my voice would still be a whisper. I would have no place to ask for advice as to Where To Turn Next. I wouldn’t know of other parents winging it, acting cool, knowing there is a haven to return to and decompress. And connect with families that swell with pride but also worry for the child that shows such stoicism in the face of invasive proceedures and pain.
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