150 Hours

I'm struggling to find words these days. It's safe to say I'm tired. This doesn't appear to be a problem for our political leaders and political wannabe leaders. I try to stay out of politics. I vote, but apart from that I mostly pray that our leaders will have wisdom, integrity and compassion, and thank God that I'm not called into leadership myself. But, despite my lack of ready words, I find I cannot stay silent.

The rhetoric these days is awful.

It's all about "hard working families." Don't get me wrong. I think to be a hard working family is an excellent thing. But, you see, I don't think that paid work out of the house is the only work worth anything.

Let me tell you about my day. But before I do, let me tell you that this isn't just my day; it's a day I share with many of my friends, both locally and further afield.

My day starts at 6AM, when I get up and give child one her morning medication. She's usually awake; I change her, clean her, reposition her, burp her through her feeding tube, check her breathing mask is in the right place, and then put the kettle on for the first of many coffees.

6.45AM and I need to start preparations for child two's bowel washout; step one is given in her bed.

More medications mixed, clothes flung on, because at 7AM the door usually opens, and our morning carer usually turns up. I say usually, because this isn't inevitable; sometimes they are off sick - and I won't be told until they are already 30 minutes late. Sometimes there has been a timetabling error and they have been sent somewhere else. Sometimes there are traffic issues. We miss, on average, one visit a week. But today, let's assume they are here.

I unhook child two from her ventilator, and get her sitting on the toilet. I give her the rest of her bowel washout. I give her her morning medications. The carer is unable to do these tasks; they are medical not caring. I make the carer a cup of tea so she can warm her hands on it and not shock child two when she touches her. The carer meanwhile strips the bed, because it always needs changing, and gathers new clothes. Hopefully we've got a good carer this morning, and they interpret "please strip the bed" to mean remove the sheets, wipe down the mattress, place sheets by the washing machine, find clean sheets and remake the bed. Otherwise I'll be gathering soggy sheets from the bedroom floor in an hour or so's time, and hoping to remember to remake the bed at some point before bedtime.

Overnight catheter is removed and binned. Oral medication given.

I make breakfast, morning carer cajoles child two into clothes, waits for washout to work, then hoists child onto the bench, gets her cleaned up, and hopefully shouts for me to come and give the next round of medications before hoisting into wheelchair. Then it's hair, teeth, splints and shoes, bookbag and WILL YOU DRINK THAT DRINK and catheter before the bus is here, a quick kiss and a hug and an I love you, and she is off to school.

Child 1, you will note, is still in bed. Because child 1 is, to use Mr Cameron's own words, "desperately disabled." Desperately disabled in this case meaning too fragile to cope with school; the atmosphere in the classroom causes her to have difficulty breathing.

I finish coffee number two, and clear up. Foul bedding into the washing machine, then deep breath and into the bathroom to scrub the walls and floor where washout under pressure has had a certain pebble dashing effect. Scrub hands, then finish getting myself vaguely presentable and ready for the day.

And now child 1 is stirring, or is she having a seizure? Possibly both; she generally fits on waking. So I comfort her through her seizure; it's a good one, less than 30 minutes long so no need to intervene. Mental note that the neurologist's secretary has not been in touch, it's been a week, I add her to my list of calls for the morning.

Seizure over, I give a nebuliser. This is harder than it should be, because respite broke the very last of the valved T-pieces which we need to use to deliver a neb through her CPAP machine. They broke the two before that as well, despite knowing these were not being made any more and that we would not be able to get a replacement. So now we wait in the hope that a different design will be available and suitable, otherwise next time she has a chest infection, we will have to break the ventilator circuit to insert the nebuliser port, and hope this doesn't put her into too much respiratory distress. I'm quite annoyed with respite, can you tell?

It's now 10 o'clock, and child one hasn't had breakfast yet. Cereal, fruit smoothie and milk through her gastrostomy tube, then time to switch the CPAP off and hope she can breathe for herself. It's a good day; she manages the transition to room air with only a few minutes of gasping and snorting.

Stiff limbs need physiotherapy; because she's not in school any more she now only sees a physiotherapist once every six weeks in term time - six times a year, effectively. And a physio assistant once every six weeks, plus a few extra mercy visits after botox - for six weeks after we have injected poison into her arms to try to reduce the spasticity. Today is not a physio day, so that's down to me. Up and down, up and down, arms and legs, but gently with the hand which is still so inexplicably sore, despite paracetamol and ibuprofen and morphine. Stiff limbs manipulated into loose clothing, a body bent double after a night stretched out, working every muscle until the body becomes vaguely chairshaped. Into the chair, and smiles for mouthwash, eye cleaning, neck loosening, and gentle, gentle brushing of hair, wondering always just exactly what the loose roll of skin at the back of her head might be.

It's 11 o'clock, and we are both actually dressed and could leave the house if we needed to. Except of course that we can't; I need to phone the neurologist again and try to get some answers as to why seizures which have always always distorted her body in one direction are now twisting it the other way. But before I do that, I need to phone the surgery and order more meds, and before I do that, I need to phone the pharmacy and chase the drugs we ordered last week, as I cannot now remember which meds I ordered and which I did not.

I phone the pharmacy, and they promise they will deliver the drugs we did order last week. Good, because we now have only half a dose of one of them left. The pharmacist hangs up before I can check exactly what's on the list of drugs to be delivered, and now it is too late to phone the GP until after lunch.

A drink for both of us then, mine orally and child 1's through her tube. Feed the cats and fish, put the washing into the drier and the next load into the machine, and now it's lunch time. Egg and cheese and salad for child 1, pureed and pushed through her tube. Side order of paracetamol at 12.

Child 1 has now been sitting up for 2 hours; she needs to get out of her chair, have a change (more laundry) and a stretch.

2PM and it's ibuprofen time; is there enough lunch left in her stomach, or do I need to find a banana to mash? It's OK, the cheese has hung around. But now it's suppository time, and that means 40 minutes sitting on a special mesh toilet seat, followed by a nice warm shower. Oh, except that 2 PM on a Thursday also means it's teaching time; a TA from school comes out for one hour twice a week to do something educational. This week they are doing some ribbon embroidery together.

3PM and child 2 arrives home from school on her bus, tired and cross and hungry. I am for once organised; there's an egg mayo sandwich and some cucumber ready sliced and waiting for her on her table, she will be far more human once she's eaten. And had her medication.

Child 1 needs to go back to bed, and wants to lie in the dark listening to hymns. Child 2 needs just the right amount of casual attention; it is a tricky time this period after school and before bed. Too much attention and it is perceived as demands, and rejected. Too little, and the assumption is she is unloved, and rejected. There will be a temper tantrum. There always is. There may be laughter. On a good day, there is.

And so it is 4 o'clock, and 5 o'clock, and I need to make tea for child 1, and feed her, and change her, and jolly her on until she can have her medications at 6 o'clock. And then she relaxes, and the little twitches stop dancing across her face, and her arm is loose, and she is comfortable again.

And it is 7 o'clock, and I must mix up evening meds for child 2, and start her countdown til bedtime. Too soon, and she will melt down because the countdown will be too long. Too late, and she will melt down because there won't be time to have a proper countdown. Later still, and I will melt down because it is too close to my own bedtime.

And so at 19:30 precisely, child 2 will trundle her chair into her bedroom, and we will do the clothes off, PJs sometimes on, nighttime meds and procedures carried out, ventilator hooked up, clean water in a water bottle tucked into just the right fold of the sheet, long pillow tucked in just so, short pillow pushed in just exactly so, duvet adjusted for maximum cat proofing, door wedged at just exactly the right angle, hall light on, kitchen light most definitely off, wheelchair on charge, goodnight and I love you.

8 o'clock and I must hook child 1 back up to her CPAP and give her the evening neb I forgot to give earlier. She's had a great day. No suction, no emergency nebs, no extra pain relief. Oh, but she did need emergency diazepam for seizures at 4.30, forgot that bit. And finally I can sit for a bit. I'm tired, but I need to wait until 10 to give the final dose of ibuprofen, and then midnight for the last dose of paracetamol. I've just given a dose of chloral hydrate, because she's not asleep yet, just lying in bed staring at the ceiling and twitching gently.

I'm typing this at 11PM; I would ordinarily go to bed after ibuprofen o'clock, but child 2 needed turning, there's another load of washing in the machine, and Mr Cameron's comments about "hard working families" struck a bit of a nerve.

Because you see I think we're a pretty hard working family ourselves. And I think this day I have is shared by many many others locally and further afield. And I find it utterly sickening that only paid work, "proper" work is valued. Friends lives were made so much harder during this parliament thanks to the removal of child benefit from women whose husbands earned over a certain amount of money. And now I hear suggestions that the Conservatives propose to remove Carer's Allowance from Carers who don't receive Universal Credit.

Let me tell you about Carer's Allowance. Carer's Allowance is one of the lowest paid means-tested Allowances out there. It's paid to people who have caring responsibilities for more than 35 hours a week, provided they don't earn more than £110 a week in paid work. It's around £65 a week; something over £3000 a year. It's taxable. For hundreds of people, mostly women, it's just barely enough to enable them to stay at home and keep their loved one - parent, partner, child- at home too. It's money in the pockets of those women who save the country a fortune by keeping their disabled family members out of care homes and hospitals. It's little enough. To a millionaire, I suspect it's loose change, which is maybe why it's not deemed worthy of protection. But to those of us who claim it, it's the electricity bill, the replacement drier, the takeaway meal when it gets to 8PM and you haven't left the house all day and haven't actually left the house all week, and have only just managed to sit down just now, and only now because you've forgotten half the things you needed to do. Including calling the neurologist and the GP.

I'm lucky. I'll be alright. At least I hope I will - no one's suggesting losing adoption allowances just yet, although I do know there are no guarantees. But I know an awful lot of women who won't be.

I'm lucky in another way too. I get 18 hours a week of respite. Three days a week, a team of two staff - one nurse and a carer, or two nurses - turn up, and take over with child 1 for me for six hours. So that only leaves 150 hours for me to cover. Sometimes in the holidays, a third member of staff turns up so I can leave child 2 with them too. Which means that for 150 hours a week, I am doing the work of 2 or 3 members of staff. And now, in order to be a proper "hard working family" I should go out and work elsewhere too?

My day isn't finished yet, and I am pretty sure that I could phone at least six people on my contact list and find them still sitting up watching twitchy children, waiting to give meds, holding out for the end of a pumped tube feed, knowing that they need to turn their child in just another minute or so. I need to give paracetamol at midnight, and do a final reposition, turning an aching hand over to try to give some relief, aspirating a feeding tube to suck out the air my daughter cannot burp, and smooth away the wrinkles which will insist on gathering underneath her.

And then bed, and sleep, keeping an ear out for the alarms which indicate a broken connection in a breathing circuit, or dropping sats needing suction or repositioning. In the time I've written this, I've been up to tweak pillows and adjust access to water bottles, give the fourth dose of antibiotic, and silence an alarm from a humidifier that has run out of water. I'll be up again at some point between 2 and 4 to turn child 2, before tomorrow begins officially with the meds I need to give at 6AM.

When exactly should I join the ranks of the hard working, and who exactly would want to employ a woman who hasn't had a full night's sleep since 2002, and who would need more hours a week in parental leave than she'd be able to work anyway? And if he didn't mean people like me, and does in fact mean to protect those of us who care for our own "desperately disabled" children, why does it actually feel as though we are being got at?

Tia

There And Back Again.

"I'm doing a virtual walk," she said, "you should join in too." And so I did. 609 miles; Lands End to John O'Groats as the crow flies. Turns out, it's quite addictive. Slump in front of the television in the evening, or watch the same programme, but from the saddle of an exercise bike? Drive into town, or walk? Sit in a café with knitting, or go for a walk? Well, both actually. 

Brownsea Island, a very good place to make a beginning. 

And so we walked. And cycled, and I chased my friend up virtual hill and down virtual dale, sometimes up real hills together and with her chaos beasts. 

And before I knew it, I'd logged 609 miles, and received a lovely shiny medal from the lovely people at the Lands End to John O'Groats Virtual Walk Facebook page. I'm sorry, I can't link from my phone, and the computer isn't behaving, so I can't write this there; maybe if I have a reader left they'd post links in a comment? 

What next? Well, turns out we left the virtual car at Lands End, so what else, but to turn around and walk the back the Long Way; 874 virtual road miles. 

More silliness with dogs, 

Cold miles under canvas, 

Warmer miles with random high tech gps thingies, 

Very cold miles walked in the rift between Europe and American tectonic plates, 

Beauty, 

Everywhere. 

And the final 874th mile of the return journey 

Celebrated with afternoon tea 

And another rather fine medal 

We have, between us, walked and cycled around 3000 miles. Which is ridiculous! We have, between us, lost something over 7 and a half stone (over 100lbs for my American friends). And we have had week after week where the weather has been good. Almost a year of fine weather whenever we walked, and wet days only ever when it turned out there was a very good reason for not being out of phone signal range. Every time it has rained, there's turned out to be a reason for it. But every time we've needed a walk, the weather has been kind to us. And an extra loving God sending gentle showers just at the right time to help us decide between longer walks or cafés on tiring days. 

So what's next, I hear you ask? Well, we've signed up for another virtual walk. But, we have created our own too. You see, like me, Alison has experienced the death of a child. Her son Andy died two years ago. Her oldest daughter Debbie decided to create a charity in his memory. 

Andy loved tambourines. And so Andy's Beat sends tambourines around the world, to disabled and disadvantaged children so that they can enjoy the things which brought Andy such joy. It's a little thing, but it's a really big thing - you can bang it, pay it, shake it, kick it, drop it, and it will make a noise. You can spin it, and catch sparkles from the metal, or stroke it, and enjoy the contrast between wood and parchment and metal. And if you're travelling somewhere and visiting a children's home or school, you can easily fit a few in your suitcase (please do contact Andy's Beat if that's you!). 

Andy's Beat (Andysbeat.weebly.com) has all the information and more. And our new challenge is the biggest yet. We are aiming to take a tambourine on a virtual walk around the world, visiting all the countries where tambourines have been sent in Andy's name. E

xtreme Tambourining, the Long Way Round. 50,6000 miles, sixty countries, and hopefully a lot of help! Because this isn't like the other virtual walks we've done. This doesn't require a commitment to a set distance. We just need lots of help. Anyone can sign up, whether as a family or a group, or as an individual or couple. Once you've bought a membership, just log your miles every week. Each week, the groups miles as a whole will be added up, and the tambourine will move on. It started on White Horse Hill, and it's already got to London. I believe this week it's crossing the channel. 

We believe this is a truly inclusive virtual walk; 2 miles or 200, it all counts.

So walk it with a friend, roll it from a wheelchair, but would you consider joining us and helping us to send even more tambourines across the world? Each membership sponsors a tambourine, gives you sweatbands, and there's even a medal at the end of it all! 

Tia