Just a little cold….

It’s just a little cold…

I’ve just got a bit of a sniffle…

Got the sneezes…

It’s still ok to come isn’t it?!

No actually – it bloody isn’t!

You see for my Bear, and hundreds of his friends, ‘just a cold’ can mean so much more, so before you send your snotty child to school, or you ‘have’ to go to work.  Think about who might be sharing your germs – the siblings they’ll be taken home to, the colleagues you’ll turn into carriers.  The people who have limited immunity and no means to fight even the mildest of viruses.

This time last week my beautiful boy was 4 hours into weekend leave of absence from hospital – he was just fine.  Overnight his oxygen levels dropped below our acceptable limit so I kept an eye on him for other symptoms – he slept well and woke happy.  As Saturday progressed his work of breathing increased, his temperature started to creep up and he needed more and more suction.  By the time Daddy came home he was having bouts of uncontrollable coughing which his nebulisers weren’t calming.  We called an ambulance to take him back to hospital where he was given humidified oxygen via trache mask and he went to sleep, he had a reasonably settled night but needed more oxygen than normal.   Sunday saw me and his lovely Welsh nurse tag teaming control of the suction – incessant coughing and rivers of secretions running out of his trache and under it, his seizure threshold lowered due to the viral infection and he started having longer seizures than his daily ones, needing rescue medication.  The pattern went on into the night and by the early hours of the morning he was so tired he was admitted to the high dependency unit, by shift change he was needing such a level of care he was admitted to the intensive care unit – which in our hospital is an adult ward.  Bear is 4.  They changed his breathing support from optiflow to CPAP and had a chest xray which showed bilateral pneumonia.   They started stronger antibiotics and hoped to stabilise him so the paediatric team could have him back – but he didn’t show any signs of improvement so the Paediatric Intensive Care Retrieval Team were called to transfer him to the Children’s Hospital. 

A condition for transfer, for safety reasons and to keep him stable on the journey, was that he was sedated – which is ok cos he’s got a tracheostomy – you’d think.  Bear’s trache is uncuffed,  which means that air can pass around it – or ‘leak’.  It also means they can’t ventilate properly through it as it’s not a closed circuit.  They do a cuffed version for this – but because we were on an adult unit they didn’t have one small enough so the anaesthetist decided to intubate via his mouth using an ET (endotracheal) tube with a view to switching back to his trache on arrival (which was a great idea in principal but it turned out they didn’t have one either!!).  He was put to sleep and ventilated, the retrieval team arrived (anaesthetist/Dr and a nurse) and spent an hour and a half meticulously changing each line and machine over to the transport ones and lifted him onto the trolley and wrapped him up tightly in his quilt.  They wheeled him through the hospital to the purpose built ITU ambulance and loaded him in the back, Mama travelling in the front and Daddy and Bug following on in the van. 

He arrived safe and sound at the Children’s Hospital after an uneventful journey and the whole meticulous loading process happened in reverse.  They needed to take blood but he was so cold peripherally they couldn’t get access so he had an arterial line placed in his groin, he had a catheter placed so they could monitor his fluids better.

He has stayed stable since he arrived, he’s getting regular physiotherapist visits to help break down the gunk (proper medical term that 😉 ) that is accumulating and consolidating in his lungs – one lung has partially collapsed.   The initial lack of an appropriately sized cuffed trache means his ET tube remains for now, they attempted to place a cuffed tube today (acquired by mama from one of our very lovely friends) but his tracheostomy has started to heal and the stoma is too small to access so he has been placed on the emergency list for this weekend for surgery to make the hole large enough to accommodate the new tube.
So here we are, in limbo, waiting and hoping that he can kick this – because many children in this position don’t.

And it’s only a cold….

Right?

Happy Mothers Day to me!

A week from now it will be Mothering Sunday in the UK.  Facebook is predictably going to be strewn with the usual status updates, photos and gushing of ‘ooooh look what I got’ ‘look what my little shits darlings (edited for the occasion because who can be cross with a chubby little fist clasping a floppy daffodil that daddy has plucked from the garden in a panic) brought me’ and ‘ugh one day of the year that’s MY day and i’m still doing the early morning/childcare/housework/cooking/insert further whinging here’.  There will be posts berating Daddies for their lack of ‘effort’ (because their psychic powers didn’t pick up that a Pandora bracelet is better than a steam mop – although a man using a steam mop = pretty damn hot… hint hint).  Posts full of complaint, feelings of being ‘let down’ or hard done by.  Posts sprayed with glitter and glitz for the audience intended that forgot to add fragrance to mask the stench of bullshit.

Being in this special needs community I have many friends whose children are no longer with us, but they are still mothers and will be for all time.  Their children leave a gap that can never be filled and days like mothers day are tough – but these women are masters of putting on their game face despite their hearts breaking inside.  There are countless mothers who have never heard their child’s little voice call for his Mama, or scrawled their name on your important work documents home made cards from nursery – and never will.  It’s hard.  It hurts. 

Our hubbies, partners,  extended families might do their best to make it a special day for us – but none of them can give us what we really want – we want them to be the little shits darlings with the ‘mummy mummy mummy mummy MUMMY!!!’ on your ear at 6am – hell to be able to get themselves out of their bed and into yours would just be AMAZING!  For their little arms to snake around your neck and throttle you cuddle, for those chubby little fingers to fiddle with that magic bit of hair at the nape of your neck.  For the only daffodil in the garden that actually produced a flower to be unceremoniously ripped up and plonked in a pint glass alongside a piss weak cup of tea and a half eaten piece of toast (just testing it was ok mumma) and presented as ‘breakfast in bed’ – which despite dying for the loo Mummy must smile and sit and eat it.  We want to be handed the minging beautiful decorated cupcake/cookies from school and we want the family outing without having to take the house with us.

So I propose a shift in focus this mothers day. 
Let’s make it a true day of celebration.  Let’s celebrate ourselves, and each other. 
Let’s embrace all that makes us wonderful – without relying on other people to tell us that we are.

Our children are blessings and teach us so many amazing things.  We gain strength we never knew possible, gather information and knowledge that turns us into oracles.  Can fix so many booboos and problems.  We can multitasking and micromanage at a level we could never manage to do for ourselves.  We are (amongst others) housekeepers, launderers, cooks, drivers, nurses, pharmacists,  teachers, bankers, entertainers, interior decorators, play therapists,  speech and language therapists,  physiotherapists,  occupational therapists, carers, we play so many roles and transition seamlessly from one to the next.   It may seem like we’re juggling cacti at times but we get there in the end and as long as everyone is fed and smiling the rest just works itself out.

WE ARE INCREDIBLE – but we’re just rubbish at allowing ourselves to feel good about ourselves – too busy making sure everyone else is ok and worrying what hasn’t been done or needs doing.

This Mother’s Day I’ll be doing what I was doing last year – sitting in hospital with The Bear, and this year with Bug too. Daddy is going to be in hospital in another city after surgery so it’ll just be me and my boys – and I couldn’t be happier – what a blessing it is to have my babies close, to hold their hands, stroke their hair, sing silly songs and tell stories. I have never been called Mama, or had my face squished by to little pudgy hands so a kiss can be given, but I know they love me – and that is the single most wonderful gift I could ever receive.

So next Sunday be humble, be gracious, remember those for whom this day is difficult and give yourself five minutes just to reflect on how awesome you are – because no matter how much you think you aren’t – you are!

All the best people are partying in our bubble

I was composing a blog post last night and I stopped mid way and deleted it – it was about how we were feeling let down and disappointed that Bear seems to be a second thought or something not special enough to make the effort for.  It’s been three months now, noone has been that ill or too busy, even if the gesture was just a card through the door.  But you know what? He is an incredible child, he has strength and courage beyond his years and a wicked sense of humour and it is a privilege to be a part of his life.   We’ve extended that privilege by default to family and people that we consider close friends, second family, some embrace it and make the most of it – and he adores them.  Some choose not to, or take it for granted that he’s there – they update their friends on how ‘their boy’ is yet rely on Facebook updates to gain that information.  I don’t feel sad anymore, more disappointed, they’re missing out on something beautiful – tomorrow isn’t promised and it’ll only be them that has regret when that time comes.  I’m not chasing anymore, you’re either with us or you’re not.  Other people have come into his life by accident, a third family, the magic one.  So me of these people are the very foundation on which our support system is based.  They are the ones who understand what this feels like, that know what it is to be in a bubble that remains static while the world continues to spin around it, that send random daft things in the mail (virtual and snail) that make us smile wishing desperately that they could physically be here to help but are restricted by land and sea.  Nurses who have to come and say good morning and good by at the start and end of their shift even if he isn’t allocated to them,  that include me in the tea run (and the late night takeaway order!) and help out with Bug when Bear needs my undivided attention without a second thought – these are people who hold a special place for him in their hearts and their actions reflect this.

So maybe we’ve just come full circle, found acceptance, worked out who we can really depend on.  If you ever find yourself, or your child in hospital long term, you’ll find out just how isolating it is, how tiring, how draining, and we’ll continue to do our very best to support you however we can, because that’s the kind of people we are, we’re just learning not to expect others to treat us how we would treat them – it’s only taken 30+ years but we’re entering a new chapter in our little family’s story – and the cast list just got chopped.

The waves they do roll…

I always knew that raising a (so we hoped) Neuro Typical child would have its bittersweet moments but days like these see the happy tears swirled into the sad ones.  Today I’m watching The Bug sitting (on his bottom not on his sacrum) barely supported, looking for the toy, leaning towards it, planning how to get it, reaching for it with an open hand,  working out the other hand would be a better bet, switching his weight from one hand to the other and repeating the reach with the other hand and grabbing the toy before bringing it closer to him and towards his mouth.  Its an honour, a privilege, a blessing, never taken for granted.  He fascinates me.

Let me play you the song of my people….

When you become a parent you accept that some things will never be the same again.   The laundry pile will be bottomless, your handbag will hold a range of random ‘what the….’ items alongside a comprehensive ‘its ok Mama has one’ stash of useful stuff.  You have to modify your menu to accommodate laments of ‘but I don’t like it’ despite having eaten it with no problem multiple times and bath time is no longer ‘me time’ and usually involves a small person joining you.

One thing I took for granted a lot pre parenthood was silence.  The sheer bliss of nothing.  Or the luxury of putting on headphones and getting lost in a piece of music without worrying what you might be missing while you aren’t listening.

It’s 11pm – and (yes I know lucky cow) The Bear and The Bug are both fast asleep.  So far since bedtime we’ve been subjected to the nightly ritual cacophony of nebuliser, feeding pump, suction, sats machine and video monitor all emitting their own white (or not so white!) noise.  The buzzing rings in my head, an endless barrage of sound that makes winding down harder than it is already, and masks the sweet snuffling of sleeping children.

It follows us wherever we go – like a siren to the public ‘look at us we’re different’ – but better still look at us and see a family that is strong, that has learned how to look after their own, that has adapted and overcome issues and to triumph in finding a new normal.

But I shan’t complain about the noise – it means that he’s still here, still fighting, kept safe. Because one day the house will fall silent – and that just doesn’t bear thinking about.