Tired

I started to complain to my husband about it the other day.

He told me to go on the internet and complain as that’s what people do now.

So here it is. I’m tired. Exhausted. Knackered. Shattered.

And it’s doing my head in.

I want to feel some get up and go. Some wind in my sails. I’ve got this itch to be the active person I am in my head. To do a juice cleanse or some shit, but I’ve still not popped to the Co-Op for my milk yet.

I’m trying hard to give myself a break though. When I’m scooping baby sick out of the turn up of my jeans or using fairy liquid to try and remove the baby poo stains out of vests, baby grows and playmats. (Second fact is a top tip by the way. It really works)

It’s when I realise I’ve been a mother for seven years. Seven. And yet my oldest living child is four. Even if RD were still alive, his development hadn’t really progressed beyond a year anyway. So any chance of the mantra “it gets easier” hadn’t really happened yet. I have been a mother to very young children for seven years.

Thankfully RD had developed enough that he could entertain himself. In fact, if it weren’t for the nappy changes and vomit catches, he was such an easy going soul. Most of the time. But it had taken him about two and a half years to get to that stage.

In the relentlessness of it all, there’s a bigger beast to bear. Sometimes, it’s boring. Actually, a lot of the time it’s boring. My brain is filled with calculating getting us all up and dressed. Fed. Getting the washing on. When the next nap will be. What I’ll do in that nap. The frustration of that nap happening on me mid feed whilst DD has a meltdown from lack of attention. So actually I did sweet FA.

Four O’clock. When bedtime seems so close and so achingly far away and I’ve no idea how we’re going to get to it. I still need to go to the Co Op for milk. The dog needs walking. All the day I’ve fantasised about painting my skirting boards, alone, untouched. I stuck a bit of masking tape down when I probably should have gone to the Co Op.

What’s really exhausting though, is grief. It churns away, burning at your energy reserves. Even when I feel like I’m not actively engaging with it, it’s ticking, aching, invading each thought process. Every activity I do, it says “remember when…” It alerts me to his absence.

The clicking on of the kettle: Do you remember when you had to sterilise all RD’s feeding tubes and syringes at least three times a day? Opening the cupboard for a teabag: Do you remember when that cupboard over there was filled completely with medicines, and now it just has calpol? Going to get the milk out the fridge: Do you remember, oh shit, you forgot to go to the Co Op didn’t you?

Here I am complaining about the boredom. Grief says “remember when you had to raise a newborn by a hospital bedside? Remember all that you lost, how can you complain about being a Mum?” Grief, is a dick.

There was a period of time when I had the energy I want back. I mean, yes, it was fuelled by a desire for peace and to indulge my inner introvert, but I ran two marathons. I worked nearly full time. I was kinder to my husband. His breathing in the car didn’t make me want to punch him. Somehow, I will hopefully wend my way back there.

The grief will just have to come with us. But like my young children, I hope it quietens down a bit and behaves itself.


 

For RD

I am nameless.

I’m not a widow. Nor an orphan.

I feel not of this decade, Victorian maybe?  More children dead than alive.

I would make a cracking X Factor back story. Dermot’s voice would go low and serious, the piano would start. Shot of my profile looking anguished.

Shame I can’t sing.

I am a car crash on the side of the road. People slowing down to pass and wonder “how will she survive this?”

I am, as DD quietly told her play therapist, very old, very happy but sometimes sad.

My son shall never become nameless. His physical form may have failed him, but his sweet, pure, lion heart lives on in all of us.

He has endured sixty, not six, years worth of medical intervention.

He made me a mother. He gave me that name. That love that has no edges.

That never fully severed umbilical cord.

He taught me a lifetime of lessons. Of patience, and hope. He taught me to truly open my eyes to the beauty of difference. To lose the fear of imperfection and embrace it.

Unconditional love in the face of multiple conditions.

He told me he loved me without words. Showed us he would get there without walking.

Because of RD I know my heart is a crystal water balloon, fit to burst or break.

Because of him I shall always have a name. Not the mummy, mum or, no doubt, MOTHER!!! you may hear from DD.

I will forever be mumumumumum.

Find Your Tribe

Before you, I assumed This Wouldn’t Happen To Me.

Before you, I assumed that if it did, I would be prepared. I would know what to expect when I was expecting.

Before you, I assumed I wouldn’t cope.

After you, I assumed that we were one blood test away from closure. One blood test that would make the connection.

After you, I assumed we’d never find our place. I searched and searched, I denied and denied.

After you, I assumed my life would be full of more worries than happiness.

 “When you assume, you make an ass out of you and me”

 

But here you are, my little blonde pixie.

Rufus-49.jpg

Here’s what I know;

You haven’t caught up. You have no recognisable words. You have legs like twiglets that don’t support you well.

That one blood test took 4 years of many many tests, and it has taught us nothing more than we had already learned so far.

That one box is never enough on any form. Nor is the answer to “what’s his diagnosis?”. Or less politely “what’s wrong with him?”. That’s unlikely to get a favourable response.

More of you doesn’t work than does.

Here’s what I’ve learned;

The true definition of quality of life. You try with your whole. When you love, you love with all of you.

You have enriched us all. Not just us as a family of four, but wider family and friends.

That every goal you achieve, no matter the scale, is enough. You are enough.

That you are a pure soul with the heart of an early 90s raver: there are never enough flashing lights or tunes.

That some days are harder than I could have ever have assumed. But not because of you, but because I have to hold you down when you’re scared. I have to let people prick and poke at you. I have to quietly shush in your ear so that I don’t cry. When I see people look at you and not see what I’ve learned.

That I have a fight in me I never knew was there. How to truly advocate for another.

That sometimes there are more questions than answers. That life doesn’t always get worse even when the chips are down.

That we are not alone. We weren’t alone when Undiagnosed. We are still as supported in a community now we have some answers as we were when we had so few.

We found our tribe. Unconnected by symptoms and level of ability. Connected by a feeling of otherness, of feeling and finding our way through the unknown.

SWAN UK is more than a support group, they have a Big Ambition:

  • They want to ensure every one of the 6000 families that have a child born with a Syndrome Without a Name every year, have the support they need, when they need it.
  • They want recognition that being Undiagnosed is not always a temporary stage.
  • They want every child and young person with a Syndrome Without a Name to receive high quality coordinated care and support both in hospital and at home, regardless of diagnosis.

That Big Ambition needs financial support. As our fourth annual Undiagnosed Children’s Day approaches, please help us support it by donating any amount to:

https://www.justgiving.com/swanuk/

Text: SWAN11 (amount) to 70070

 

And if you are a family needing that support:

 

info@undiagnosed.org.uk

undiagnosed.org.uk

undiagnosed.org.uk/blog

020 7704 3141

Wabi-Sabi

Wabi-sabi (?) represents a comprehensive Japaneseworld view or aesthetic centered on the acceptance of transience and imperfection.

WIKIPEDIA 2015

Nothing lasts, nothing is finished and nothing is perfect

Robert Powell

I’m not particularly mindful. I’m a million miles from Zen most of the time, bolstered by a Mum on the Run diet of cheap snacks and caffeine.

And apologies if this is a bastardisation of the said Japanese philosophy. But as I oil the rusty cogs of trying to articulate my brain fug, I’ve had this phrase floating around I there, occasionally bumping off the sides. It seems to accurately sum up a space we’ve been existing in. A space where, thankfully for quite some time, has had its own odd stability. That from the outside may seem wonky, frantic and necessitating a penchant for gin but has actually been relatively calm, happy and glacial.

So, all that running eh? Who’d have thought it, that the girl who’s own knees could take each other out (a genetic trait that my daughter has acquired), that was in the final few at any race at school and that scoffed at runners, could actually find it such a tonic. So much that I finished the Virgin London Marathon in April in tears, happy tears, as the experience had been so fully transformative. That I also cried two thirds of the way through knowing it was going to end and despite the pain and endurance, I didn’t want it to. Crying as I completed a childhood dream, remembering being stood by the Cutty Sark as a 4 year old watching my own mother pass by, and hoping one day I could be a real life super hero like that: Foil blanket non negotiable (Yes, crying featured strongly). I wasn’t a perfect runner. I was mostly a soppy mess. But I’d done something that had previously seemed like a pipe dream, and I knew that wherever I have been the last few years took me there.

And I may have sung “The Wind Beneath my Wings” (in my head I hope) and imagined my family. Because I’m still actually not cool.

RD has been stable. Really stable. We know underneath it all that his blood work doesn’t show such stability, but from the outside he has flourished. Pink in his cheeks and meat on his bones, he has made big strides from the baby that was a curled up little dormouse. We’ve all come to understand that he sits firmly in the severe to profound end of disability. But the nice thing is, once you let that in, and embrace it, his only yardstick is himself, and what he achieves. His physical feats, his developing curiosity, his calm and sweet nature are all his. And yes, I can’t sugar coat it, he has had periods, and is still prone to periods of self harm. And getting his poo in places. But he is my impish, beautiful boy, who is about to turn 5; a milestone in itself.

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And DD. If RD is an Imp, she is my full on pixie. Full of mirth, joy and deliciousness. And toddler tantrums. And tiny hands that goose me. She continues to bring the umami to us all. She loves Eetabix, princess dresses and football. Just on the cusp of 3, our big little girl whose understanding of the things around her brings perspective. Occasionally this is painful; her reading of Pirate Pete’s Potty had her as like Pirate Pete (Score! I thought) but then RD as the baby. But mostly, she lightens or distracts most serious moments. Climbing on the doctor’s knee for a cuddle as he talks through transplant options, or flouncing into the hospice in full Snow White regalia complete with Frozen pink vomit wellies.

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We’ve moved house. And area. In fact, we’ve become adults and actually own property. Years of frustrated Pinteresting have exploded over every room. We’ve stripped and painted, taken out walls for better accessibility. I love it like another child…

But onto that… New house. New baby.

I have to cycle back a bit. Somewhere in all those changes and moves, I got a phonecall that I honestly never expected. Over the last year we’d spent some time discussing and never really concluding whether we had finished our baby days. I think we were settling on that we’d been lucky now. That the risks felt too much for DD primarily. We could give her an equal playmate. On the other hand potentially living the knife edge of losing two siblings or being responsible for double life long care.

So when our lovely geneticist called me in December I assumed it was just a check in. RD had been stable since all the metabolic and mitochondrial testing days so the balance of routes to look into had shifted. When they’d asked for consent for more bloods in the preceeding months for some new testing, we agreed to it as we had so many others. Just in case but never expecting. A long wait over Christmas until we could fully catch up, but what they had come across was all we could hope for as a wider family whilst simultaneously as useful as a chocolate teapot when describing RD.

In his early days as a neonate, after many a sleepless night spent on Google, I asked his consultant whether RD could possibly have Russell Silver Syndrome and Congenital Nephrotic Syndrome together. Oh, how that was dismissed as impossible. Unheard of. Not that I like to have the last laugh, but Ha. Essentially that’s what RD has. He has a MUPD (Maternal Uni Parental Duplication) of Chromosome 6. That is known to be one of the causes of Russell Silver Syndrome. He has a gene change within that that is known in duplicate causes kidney and brain abnormalities in mice. So far unseen in anyone else.

The upshot being that a maternal duplication of a chromosome is incredibly rare. So, so rare that we were told it’s rate of reoccurrence was negligible. And DD was not a carrier. After I moved on from some misplaced guilt that I somehow caused this, that can of worms could be reopened. Back to the marathon. I actually suspected I was pregnant just before I ran it. Thankfully although somewhat uncomfortably that proved not to be the case. I’m not sure we were ready at that point. But as we had a weekend to ourselves it meant we could discuss it with clarity. We agreed in all Bristishness that it was time to start thinking about it again. Very decisive there.

2 months and a week later, I showed Wolf a positive test. His reaction was that it was ‘only 60% accurate’. Glad he’s not in advertising for ClearBlue. Being a very proactive pair, we were still thinking about trying. The power of thought right there.

Nothing is finished, and nothing is perfect.

So here I am, back at my keyboard. Oversharing. Starting another circle of life, with less lion lifting (I am completely unaffected by the Disney marathons of my daughter as you can see).

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Busy Doing Nothing…

Mummy and Daddy have a special cuddle… And a couple of weeks later when two bars appear in that little window, Mummy is well and truly incarcerated by guilt. In fact, so all consuming it is, I think we’ll add a capital G. Guilt. With a squirty cream topping of worry.

Suddenly, you are startingly aware that you might just not be up for this job. A pregnancy full of decisions about cheese and prawns, and whether you should drink at all, or a touch. A little tipple. Should I have kicked that wheely bin? Got stressed about that something or other (life pre babies fades into insignificance). I don’t know how long I’ve spent agonising over whether to buy a separate bathroom and kitchen cleaning spray, given that both are there to deal with the aftermath of food production. But what if one doesn’t clean enough and one child gets listeria or something? Guilt. Guilt. Worry. Worry.

It’s all a bit time consuming, doing this. You never win, common sense and logic rarely win out. I know for a fact that it’s something that bonds us as mothers. But there’s an extra layer with having a child with complex needs. Therapy.

Rufus is a good host. He accepts visitors regularly. Physiotherapy. Play therapy. Speech and Language therapy. Sensory Integration therapy. And we embrace it, given that we know Rufus has potential, it just needs a lot, and I mean, A LOT, of repetition. He’s a happy wee soul, but happiest if we all just naff off and leave him to an old biscuit tin of pound shop treasures and In The Night Garden thankyou very much. But I have to try and force him to Engage. (Trekkies, I hope you like that). He duly pushes my face out of his, and does all his best work when I’m not looking.

Not you again.
Not you again.

And Dulcie is getting in the way a bit. She cottoned on to the fact that I have wasted invested two and a half years in trying to get Rufus mobile, and has made it her mission to achieve ‘blink and she’s licking the door of the oven’ tactics. She is more than mobile, she is relentless. And fearless. And in a room full of toys, she employs a needle in a haystack room sweep to find and stick, well probably a needle, in her mouth. Short of attaching velcro to a sleep suit and employing a bell jar large enough to stifle the yells, there’s not much I can do. Plus, I’d feel Guilty.

I will not put that in my mouth, it looks far too edible.
I will not put that in my mouth, it looks far too edible.

So therapy, well, I try. But I have to find that time between feeds, and naps, and appointments. And guess what? Will 30 seconds do? And it’s usually fought through tears, both Rufus’s and mine. Guilt. I’ve been known to sit by his hospital cotside at a loss as I just calculate how many hours of quality therapy time we’re missing out on. Given that at the time he’s either flipping out, or idly batting a flashy toy, he just needs sleep therapy. You know, a good old kip. But it’s easy to forget that. Daft right? Logic, flew out of that little double barred window too.

And you know what else? What I feel Guilty about for thinking? Therapy is Dull. Dull Dull Dull. Repetition, again. It’s not like I’m hothousing him and being rewarded by massive leaps in improvement. It’s spotting the minute moments of recognition. A flicker of understanding, and then pulling on my last shred of sanity and pulling out the pompoms and handstands of reward (I can’t actually do handstands. Hope you feel Guilty about that Mum). I’d far rather do fresh air therapy. Swing therapy. And so would the boy. It involves a lot less velcro for a start. So velcro for one child handy, for another, complete pain in the arse.

Somehow, therapy or no therapy, our days are full and yet somehow not. The balance rarely tips to let me know I’ve done right by my offspring. So I’m learning to Let Go. I mean, who’d have thought Rufus would actually start babbling? He likes to give the nearest packet of wipes or reflective surface a good “bah bah Vah Vah duh duh”. And I don’t remember them ever endlessly point at themselves and say “Ma Ma”. I wouldn’t be surprised if his first formulated word is “Wy Puh”. But by god I would cry.

You might also be asking yourself “how is she writing this mid afternoon when she’s just told us she’s so very busy?”. Well, that’s all thanks to home respite via the Lagan’s Foundation. Which I should be using to do nothing. But the Guilt won’t let me.

And just so you know I’m not alone on this, seems like there’s a lot of us thinking about the therapy guilt. Probably because it’s sunnier outside, so we’re all doing a lot more “walking to the supermarket therapy”. So delve in to some other posts here;

Little Mama Said

One Off Ordinary

Sun Moon and Stars

Double Header

I am a mother with two heads. Two faces. Seemingly and unfairly though, one brain, which requires apportioning between the two. JK Rowling wouldn’t have dared put Master Potter up against me. I can definitely breathe fire when pushed. I’m the one at the end of level 9. The one that you search for cheats on how to crack. You think you’ve dealt with the worst monsters, but you see they were my children. And you’ve hurt them, and here I sit, waiting, ready to give you a good fight.

Mini D is suddenly not so mini. Only last week I was asked if her and Rufus were twins. She’s turned six months old, and with that I realise All That Was Missing the first time round. She’s on the move, she’s cheeky, spirited. Hard work of her own accord. Gloriously podgy and pink. Wolf refers to her as Tubs. And I have realised that I am two completely different mothers to my children. I cannot adopt a style of parenting, make it fair. Dulcie allows me to be the Mum I always wanted to be, Rufus has made me the Mum I’ve had to be. But whilst you think that sounds wholeheartedly negative to Rufus, bear with me. Let both my heads tell you something. Remember they have a brain in common.

My conjoined brain often thinks about judgement. Pre Dulcie I was scared, I felt watched, observed. But really it was me, watching you, watching me. I was assuming judgement based on my own fears. You may, or may not have thought things about my child. You may have just wanted to ask, reach out a hand of support, understanding. You may have also thought the bad things I worried about. I don’t blame you. I have no sodding idea who ‘You’ is. So please, don’t think I’m talking about you. You hear?

Here I am as Dulcie’s Mum, swanning around with her in a sling. Breastfeeding her proudly in public. Trying her with finger foods and Baby Led Weaning. Before her, but after Rufus, jealousy would have had me look at this mother as pretentious. Holier than thou. Sanctimonious. Of course she can feed on demand, her child demands it. Her world is timeless. No beeps of pumps, or carefully timed anti vomit feeds. Completely and utterly unmedicalised. Feeds measured by whether Tubs rolls backwards and looks at me with that happy full look in her eyes. Drunk with my own gold top. I feel hazy sometimes when it’s just her and I. We get up without looking at clocks. We go for walks, we’ll both know when it’s time to stop and refresh. It Just Is. Completely uncomplicated. Untherapised.

As Rufus’s Mum I have to be ready to fight. He’s been wounded on every previous level but keeps getting back up again. I have to find reserves, I have to check, and check again. Chase and hunt you down. I have to find that fight when I physically feel like I have none left, when I may be nearly defeated. But that’s what makes me better and stronger. Everyone always loves it when Batman gets up again, when you thought there was nothing left. My day is itemised and scheduled. Things get added to that list all the time. In the last week I now have eye drops and a new reflux medicine to remember. That’s not just remember to give. It’s remember to reorder the prescription, in enough time for it to arrive at the pharmacy, to be able to collect it so that we don’t run out. And that prescription came from the hospital. So I have to take it to the GP, and ask them to write a new ongoing prescription.

I bet you don’t fancy being Rufus’s Mum much right? Dulcie’s Mum’s face gets a lot more chat. Usually because she likes to look you up and down and then give a heartmelting smile. Dulcie that is. Like mother like daughter? But when it’s her and I, we seem to attract chatter. If you’ve ever frequented a ‘feeding room’ in a well known department store, you’ll know the sort. I normally avoid them due to the acrid stench of festering nappies and walls painted in an unappealing shade of blue that can at best be described as ‘Elephant’s Prozac’. Dulcie had decided that public feeding was way too distracting one day and in fear of a) being done for overexposure and b) ensuring she actually ate something, we went for a power feed. There was someone else there, we indulged in some chatter. Both of us had our older children in childcare. There was mention of how the older child had taken to the new addition. Rufus’s Mum appeared and explained that Rufus was in fact either mostly unaware of his new sister, or just unable to tell us that she was doing his head in. Plus some more disability information. Prior to this the other woman had been sat three quarters turned to us, eating her sandwich in this godsaken place. She took a moment, and turned to me. “How could you decide to have another child when your first is so disabled?”. Are you reeling in shock? It wasn’t said nastily. It seemed out of genuine concern. I wasn’t angry. I actually felt proud. I thought of her eating her sad little pre made sandwich in there, afraid to feed in public. I thought, Man Up. Rufus’s Mum feels sorry for you, that you’re a little bit ignorant.

There was also the time that Dulcie and I sat in a cafe and she pulled in some chat. She’s a granny catcher, our Tubs. A lovely lady started to tell me about her babies, all grown up. She had photographs. She came across one, a girl in a wheelchair, splints on her legs. “This is my third child. She only made it to 15. She was born with Spina Bifida, I bet you’ve never heard of that now you all take folic acid whilst pregnant.” I explained gently that I had heard of that condition, in fact, like a bumper sticker might read: My Other Child is Disabled. We shared a moment. Quite then how that descended into tales of her battles with cancer and catching MRSA during an operation and requiring reconstructive work on a very delicate area with a skin graft from her thigh I’m not sure. Not sure what Dulcie’s Mum’s face did then, she was struggling for words of comfort. But still, I felt I could hold my two heads up high then with her. She knew, I knew. Us double headed Mums, some are triple, quadruple headed. We’re rare for a reason.

My two heads talk to each other. Dulcie’s Mum has softened Rufus’s Mum. She says, it will be ok. She says you can do as many therapies as you want but Rufus is his own man, in his own time. So take him to the swings and make him smile. She says, let Wolf have the control. She says, look at me. I would never judge you. And Rufus’s Mum says to Dulcie, don’t take yourself seriously. Don’t sweat the small stuff. Try not to find her independence bittersweet, enjoy the timelessness. It’s a good balance.

Dulcie has made me the Mum I wanted to be, but I realised that’s just a shell. Rufus has made me the Mum I’ve had to be, but it’s a badge I wear with honour. It’s realigned my trajectory, but that trajectory was made of sand, and only now do I see that. And my children’s paths are still unclear, I’ve realised I can’t look too far for either, futures are constructs. Whilst Dulcie may be ticking off milestones like an efficient project manager, clipboard in hand, she’s not older than Rufus. She may be able to do things he can’t, but she’s green, fresh. Rufus has been here two and a half years, he’s seen more. He’s endured more than most of us in a lifetime. He’s somehow more knowing, older, wiser. His clipboard is just the wrong way up.

When two heads collide...
When two heads collide…

The Wood For The Trees… The Woody, sorry Wordy, Part

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?

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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.

Caution Very Brave Boy
Caution
Very Brave Boy

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