Wednesday, 23 December 2015


A post started a dozen different times. Because there are no good ways to say it. 

Imogen Cecile Arden died very peacefully in the evening of December 20th. At Helen House, in my arms. Her sisters' birthday. 

A beautiful life. 

She was very communicative during the day on Sunday; enjoyed a carol service and let us know some things which were important to her. 

There was business, there were visits from her family, there was utter exhaustion, and then there was beautiful peace. 

There will be service of thanksgiving for her life on January 5th, 11.30, at Christ Church, Abingdon. 


Saturday, 12 December 2015


The convent bell tolls out its call to morning worship as I zip my boots, ready to officially face the world again. 

My day begins earlier now, as I slip downstairs in what should be the quiet of the night. A peek at Amana, tucked up in her room at the far end of the corridor, sheltered as much as is possible from the bustle of the hospice night shift. 

A baby cries. Long, choking wails of a child so overtired and worn out with coughing that only sleep will fix, only sleep is the one thing the seizures will not allow to happen. 

It is not my child, but I remember those nights. Walking with Imi on my shoulder, a towel ready for the inevitable vomit, wondering if it will happen before or after enough sedative has been absorbed to allow for rest, once the pain of reflux has subsided. Speculation this, as obviously the night staff do not tell me other children's stories. But I have seen the stuff limbs, the small head, the weary parents, and I remember this. 

I want to tell them that it gets better, that they will have so many wonderful times with their child. That there will be times when the meds work, and the dog lifts, and they can celebrate their child and create amazing memories. And then I look into Imi next door, as she sleepwakes through her final times, and I think perhaps I am not the person they need to speak to today. 

I look in on Imi. She is awake. Her needs are both minimal and huge now. Medications infused subcutaneously, into lines in her leg and stomach. Thighs bruised from failed lines, but comfortable and calm when all is working correctly. Two hourly turns, mouth care, a daily wash, soft light, something quiet to listen to, and a stack of balloons to watch. 

It has been a month, more or less, since she had anything to eat, a fortnight since she had more than minimal amounts of fluid in her stomach. I see the difference in her physically more through the eyes of our visitors than by looking at her. She has lost her initial puffiness. She is getting rather thin, they tell me. Her eyes have dark shadows, and her poor, poor mouth is a mass of blisters and foul smelling sticky secretions. 

And she is floppy. Arms which flop as we roll her, fists unclenched, fingers gently twitching the last remaining indicators of the massive spasms which held her rigid and upright for so long. Impossible now to think of trying to sit her in a wheelchair; her body would flow through the straps and restraints and land puddled on the floor. 

She talks, sometimes. A quiet shout for a favourite carer three days ago choosing to blink now instead of move her so sore mouth sometimes, she tells me she is not  in pain elsewhere. 

She mostly ignores my questions; they seem to be a distraction. But she will still let us know she needs another story on her iPad. Or that she prefers to lie on one side than the other. Apart from that, she sleeps. And wakes. Sometimes both at the same time. 

Often now, she will open her eyes once visitors have left. Yes, she knew they were there. No, she had nothing to say to them. 

And so, she drifts. She is aware of us. Sometimes her hand appears to want to be held. Other times, touch is clearly an unwelcome distraction. Conversation across the bed is sometimes appreciated, other times causes seizures. 

Her meds need increasing every few days as her body, whilst shrinking, appears to need more help reducing pain and seizures. 

Is she happy? I can't tell. She doesn't answer. She will make the effort to let us know when she is in pain, and will often make the effort to tell me when she is not, too. This is reassuring. 

For the rest, I mostly sit and watch. She appears to appreciate this. Time passes. Slow time, when she is awake, and we have eye contact, beyond words. Very very slow time, when CD keys need tracking down, when a second nurse must be found to check of drugs, when she is in pain and I cannot simply crack open the morphine because there is A Process, and it must be followed. And fast time, when what feels like to blinks is in fact the gap between lunch and tea, and I am sure I am still full from breakfast. 

Conversation happens around us. I meet friends, move away from Imi's bedside to accommodate others who also love her very much, and realise that the rest of the world talks faster, louder, harder. And I have no idea what day it is, or date, just that my daughter is lying quietly in a balloon filled bedroom, moving slowly further along a road I cannot take for a while yet. She is more at peace with this than I am. 

And time keeps on passing. Christmas appears to be happening around us. Every time I step out of Imi's room, more tinsel has crept up the corridor to greet us. A Christmas show, and I am ambushed by jolly women in onesies singing about how we should "look to the future now/it's only just begun." Daily countdowns everywhere, reminders that Amana has just one more week at school, that last posting dates have happened, that we should have trees and festivities and general hilarity. 

And there should be good times. This is a time for feasting, although my child cannot manage even 100 calories a day. This is a celebration, just as much as it is my own personal devastation. 

I wonder how Abba God felt when Jesus was born? Heavenly hosts singing alleluia, and the knowledge this baby would become a refugee, and later die a cruel death. At least I know that when my desolation is complete, Imi's happiness will be fulfilled and in ways beyond my own imagining. Her first Christmas at the feet of the King, or my last with her here? She doesn't say which she'd prefer. And honestly? I'm not sure I can either. 

Thursday, 26 November 2015


So here's the thing. 

I've written this a dozen different ways, but there aren't actually any easy ways to say it. 

We came into Helen House last week, to try to sort out Imi's pain. We did sort out the pain; she's had a mostly very comfortable and settled week. Alleluia! But, we did that by stopping her feeds. Food or formula going in; unbearable pain and spasm and thrashing around in agony. No food; peace, smiles, calmness.  

We tried tiny tasters of food. Instant pain and discomfort. 

No food brings peace, but obviously it brings its own complications; Jesus may have survived 40 nights in the desert without food or water, but most of us don't have that constitution. 

Imi is managing water (dioralyte). But 100 calories a day isn't sustainable in the long term. 

We came home. By choice, last Thursday. With a plan for a big Road Trip to visit her best friend, and a promise of no more travelling after that. 

Imi has other plans. 

We planned to rest until our trip away; Imi was awake very early on Sunday, and adamant she wanted to come to church. And so we did. And it was painful, and she objected to the sermon (not on theological grounds; she just preferred the worship). She sang a little, hung around for coffee, and I discovered my elbows must have been getting dusty without me noticing. 

On Monday, we had a chat (because, even through the fog of pain relief there are still times when she is awake, alert, happy, and communicative). She told me Yes, her body is wearing out. Yes, she's tired. Yes, she knows she doesn't need words to speak to Jesus (eye roll: mother you are so stupid to even question that). Yes she's ready to go with Him. 

No, there's nothing she needs to do. No, there's nothing she wants to do. No, she's not sad. 

I asked her about our plans for the weekend. No response. 

Tuesday, Imi had the most peaceful day she's had for possibly months. Heart rate consistently very very low (for her), calmness and peace, and the carers we had visiting left early as it was so very clear she only wanted to rest with her Mennonite hymns on a loop. SE Samonte playlists on YouTube, for those who want to know what Imi's been listening to much of the time. 

Yesterday (Wednesday), Imi woke up with a fever. I say Imi woke up; I mean, I woke up and found Imi with a fever. I don't think she slept on Tuesday night. 

And then she started fitting. 

We had big long peaceful lovely cuddles, then our nurses came and we swapped over for a bit. Imi wasn't wanting to talk to me, but gave a big yes to having a nurse cuddle before my legs fell off. 

A friend came; she and I escaped the house for a short while. Imi started fitting again, I came home, and it became clear that whilst we were making plans to cancel or postpone the road trip, Imi had a different destination in mind. 

One GP, three paramedics and an ambulance later, we are back at Helen House. And as we got Imi into bed here, her heart rate settled right down again, and despite the seizures she has been very calm and peaceful once more. 

Some soreness last night, resolved by finding a less bright light, rolling her back onto the side she usually dislikes, stopping her dioralyte, and giving her some extra morphine. 

It's now 5am; I went downstairs to see her, and she has not stirred from where she was last night. 

Calm, peaceful, and clear that her work on earth is done. 


Sunday, 11 October 2015

And Did Those Feet in Ancient Times?

It's been far too long. Too busy; new puppy then no puppy; ill health; summer holidays; huge soul weariness; big life changes and frustrating life busyness. And what had been weekly walks fell into a five month gap. 

And today we broke the gap, and after a weekend of New Wine Women, of worship and teaching and solemn words and late night silliness, we skipped out of church and took a long walk with God instead. 
And it's looking like a beautiful day. 
And we are oaks of righteousness, 
More than conkers, we will bend in the storms but we stand strong. 
And we are never alone. 
We live in such an amazingly beautiful country. 
Houses built to last; lived in and loved, and hiding in the shadow of this beautiful church. 
A church originally built in the 1100s; nine hundred years of prayer soaking into its walls.  
A church already old when these Books of Common Prayer first came into common usage. 
A church mention in the Domesday book. Restored again and again over the centuries, 
Such simple beauty. Such peace. 
Such sorrows in its graveyard; a stone erected to the memory of six children from the same family, several of whome shared the same name, none of them living beyond two years. 
And such solid comfort. 
Fields grown tall; retaining walls holding back the accumulated weight if nine hundred years of soil washed down from hills and fields still bearing signs of medieval terrace farming strips. 
Steep hills to force ourselves up, with gentle and overwhelmingly beautiful views from the tops. Roman ruins centuries older than the church, with mosaics bearing witness still to the early church and the presence of Chi Ro, Christ in this land even in the most ancient of times. 

And, most English, scones and tea in a National Trust Café.  

An amazing weekend; refreshing, challenging, strengthening. And then a beautiful beautiful walk, filled with pictures to confirm messages from the day before, filled with hope and new resolves, and precious time with a precious friend and with God. 

Jesus Christ; the same yesterday, today, and forever. And this beautiful world, where no two created days will every be the same. Where a thousand years of worship can be fresh every week, and mercies come new every single morning.  

And we are the church; we are the body of Christ. And we too need restoring and repairing again and again. But we are beautiful. Our cracks and flaws become the gullies for streams of Living Water. And we are strong; not because of who we are, but because we are built on The Rock, filled with the Holy Spirit, and clothed in Glory. And we follow those feet in modern times, through England's green and pleasant lands. 


Sunday, 20 September 2015


Thoughts churning since this morning's sermon (Thanks, John). 

When we are finally able to accept that we are loved, completely and utterly and wonderfully, by God, then we are finally free to be whoever we were created to be. 

When we are secure in the knowledge of that perfect love, we can set self aside without worry. 

Knowing there is absolutely nothing I can do to make God love me more (and that nothing I can do will ever make him love me less), I am free to be me, to make mistakes, to fail, to mess up horribly. And free to start again, and again, and again. Free to try a hundred different things, and free to fall down and make the same mistakes a hundred different ways. 

And I am free to put those mistakes behind me. Free to listen, free to follow directions, free to walk upon the water and to do amazing things. 

Free to find joy and contentment in doing the things I already love doing, since these are the things I was created to do. Free to find immense satisfaction in the smallest of caring tasks, free to enjoy the simplest of suppers, free to delight in the happiness of a child blossoming in the right school. 

I'm not sure I was created to lose my temper with the feed pump, the paperwork, the child who has to have my total undivided attention at all times and especially when I am on the phone to someone else. But maybe that short fuse helps when I'm chasing support we aren't getting, appointments we haven't been given, equipment which doesn't work? 

I'm pretty sure no one is created to actively design a house as messy as mine. But maybe my ability to sit quietly within the chaos enables me to get the rest I need in order to carry on picking up the pieces when the chaos is being created? 

So I've taken a sermon all about turning away from self and towards Jesus, and I've turned it into a blog all about me. Cos I'm good that way. But I think it's important. I can't be free to love God until I can accept that he really does love me, right now, just exactly as I am, with all my mess and imperfections and chaos and clutter. 

I don't need to fix anything first. 

I live in a house with a door on the latch; nurses, carers, friends, family, and an occasional delivery man all let themselves in. There's no time to do anything beyond kick the dirty dishes under the settee and stuff the socks behind a cushion before company is in front of me.  And it's taken a while to get used to, but I love it. This is me. This house, my home. It's not perfect (see above re: dishes and dirty socks), but it's who I am. The pressure's off. No hours of frantic tidying before anyone is allowed past the door; these days many visitors bypass me entirely and head straight for the kettle or the loo. 

And I'm probably slow to get the message, but I'm living with my life on the latch too. And I'm loved not one iota more in my Sunday Best (yes, fellow members of the congregation, those are my smarter clothes) than I am in my slightly stained spotty dressing gown. And I am not loved one iota less in those times when I ignore the dishes and curl up on the settee in mismatched pyjamas than I am when I am heading out of the door in clean clothes having actually brushed my hair. 

And I think maybe it's only then, only when we let that perfect love cast out all fear, that we can cast out that fear of exposure, fear of what others might think, fear of being considered a nuisance, fear of being found unworthy. And it's only when we are truly free to be ourselves, that we can truly forget ourselves in the wonder of following the paths set in front of us. 

Or maybe that's just me? 

Wednesday, 16 September 2015


Rubbish photo, tasty quickish dish. Kedgeree with cauliflower rice, essentially. 

Poach 250g smoked haddock in 150mls milk of your choice (dairy, non-dairy, whatever you fancy). About 5 minutes, until fish is flaky and cooked. Remove from oven. Set two eggs in a pan of water and hard boil them (10 minutes once water boiling. Ish). 

Grate half a large cauliflower, boil for 1 min, drain, then pour into a tea towel and squeeze the extra water out. Spread out to allow steam to escape. 

Meanwhile, sauté 3 small onions. Add two cloves garlic, minced. Stir in a goodly dollop of garam masala powder (I used a heaped tablespoon), hunt around for turmeric and fail to find both it and the ginger you planned to add. Didn't need either, in the event. 

Add in one small green chilli you find at the bottom of the 'fridge when looking for the ginger. I deseeded it; your choice. 

When onion soft and smelling beautifully, pour in the milk and fish juices. Add 50g creamed coconut, and a splash of boiling water to dissolve it. Add more milk or water if needed to cover bottom of the pan. 

Peel fish skin off the haddock, flake fish into the frying pan, and put fish skin on floor for cats, before remembering you have the only cats in the world who won't eat it. 

Pour cauliflower rice into frying pan and stir around to coat in sauce. Add juice of half a lemon and a big handful of frozen peas. 

Wilt a big bag of spinach, put around edge of serving dish. When frying pan sizzling gently, scoop vedgeree into middle of dish. Peel eggs, quarter, and scatter on top with a handful of parsley. Give lemon a last viscious squeeze to extract final drops, and serve quickly. Or, photograph and then tip slightly over half into the blender for your daughter.*


* this step optional.  

Saturday, 29 August 2015


It's 8 years now since a young adult was placed in a bath of water that was too hot. Eight years since we took that long ambulance ride away from the hospital we knew and over to East Grinstead and strangeness. Eight years since introductions and developing relationships changed to awkward defensiveness and police investigations. Eight years since a worn out and finished with body was locked in a freezer for three months until permission was finally given to lay her to rest. 

And I only knew her for seven years before that. My dancing cuddly koala of an eleven year old, who could cling on round my neck as I walked out to meet people. My grumpy teen dragging the duvet back over her head and refusing to get up for school. My little innocent, needing one more recital of the Three Little Pigs, one more Billy Goats Gruff, one more Cheese and Potato Pie and maybe even a Chocolate Bar. 

It seems extraordinary that she can have been gone now for longer than I knew her. Crazy. How can she have been a part of our lives less time than she has been apart from our lives? 

It can't be eight years since the phone all which changed everything, eight years since we stood by a bed listening to the sounds of a sats monitor gently beeping more and more slowly as an overburdened heart wound down. Eight years since the relief about the end of the suffering marked the start of an entirely different kind of pain. 


And so, as an annual reminder, I'll say this again. If you're a carer, and you bath your clients. Take off your gloves before you test the water. Use the thermometer. Follow the law, follow best practice, save lives. 

And if you're one of our carers, caring for one of my children, forgive me if I possibly seem a little irrational on the subject of testing the water. It matters, folks. 

And if you buy a secondhand bath tub, get the manufacturers to fit the thermostat accurately. Maybe it is expensive. Funerals cost more. 

And if you're a friend, don't tell me your thermostat's all wrong; tell the plumber. Fix it. Because trust me, you don't want the images I have in my head even eight years on. 

Sunday, 23 August 2015

Love heals.

One girl, getting bothered, sats dropping, pulse rising. Breathing fast, losing smiles, and generally working too hard at what should be a relatively simple automatic process of keeping air moving in and out of lungs. 

Move said girl from somewhat squashed scoliotic upright position onto a camp bed where her spine can straighten where it needs to and kink further where it must. 

Pain better, but everything else still too hard. 

Take one boy, place alongside and slightly underneath the girl. 

Watch girl's panic ease, see vital signs improve on the monitor. 

Out of interest, clip second monitor onto the boy. And watch as the girl's heart rate slows, coming to rest at exactly the same rate as the boy's. 

Two hearts, beating as one. Breathing calms, sats pick up, a boy's gentle hand strokes an ear and teases out locks of hair. A girl's distress replaced with gentle smiles for her boy. 

Love heals. 

Wednesday, 19 August 2015


Sun, sand, sharks and jellyfish on the beach, lifeboats launching around the corner, giant rabbits, baby cygnets, ice creams and fresh fish and never changing but always something new to find alongside our old favourites. 

Thursday, 13 August 2015

Friends can.

Friends can 
Tease gentle strands of your hair until the whole of it is a crowning blaze of tangled glory. 

Lie on each other's arms until they go to sleep, and only protest until they are awake again. 

Gently tickle ears and necks until everyone is laughing together. 

Argue over whose turn it is to choose the music. 

Detach sats monitors and feed pumps to set off alarms and make each other laugh. 

Find entirely non-verbal ways to insult, tease, and celebrate each other. 
Maybe we let our words get in the way. 

Monday, 10 August 2015

A holy mess.

I'm a holy mess. 
Cloaked In righteousness, 
Hooked on holiness 
I am a holy mess. 

God's life laundry
Old stains shaken loose
My God is bigger. 
Waves of shame washed in oceans of love. 
My God is bigger still. 

A holy mess
But I am a child of God. 

I am a holy mess. 
Cloaked in righteousness. 
I am a child of God. 

Hooked on holiness. 
Washed, and with a new Grace dress. 
I am a child of God. 

Saturday, 27 June 2015


Too busy having fun to have taken any photos myself, so borrowing this one instead. 

Imi decided she wanted to see everyone for her birthday this year. She didn't want to go out, she wanted the world to come to her. And the world did. Best friends driving down from Newcastle to hold hands all day. Assorted branches of the family bearing gifts. Favoured friends who got the giggle and greet, and apparently less favoured friends who were ignored (but appreciated nonetheless). A vast amount of food, and a parade of people to keep her happy all day long. 

Just enough chocolate cake and strawberries to turn the suction pot bright red and worry Monday's nurses. And so much energy put into Saturday that breathing was optional on Sunday. And she's been pretty tired and very uncomfortable ever since. I'm sitting up at the moment waiting to be able to turn the limits on the sats monitor up, because I can't leave her setting them off at 80, and not am I happy to go to sleep with them set to 75. She isn't ill. She's just very very tired. But she did what she wanted to do, she had a fabulous day - and a beautiful new dress, as ordered by her at very short notice. 

And she's still here. Still smiling, still sarcastic, still able to work her mostly non-functional body in order to knock things over right where they will cause maximum inconvenience. Still making her own decisions, even (or perhaps especially) when they don't fit in with other people's timescales. 

Happy Birthday! 

Thursday, 30 April 2015

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?


Sunday, 19 April 2015

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, 

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 ( 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! 


Tuesday, 17 February 2015

Accessible London

Amana and I had a day to ourselves, with Imi very unusually being in respite for a couple of nights in half term. She decided she wanted to go to London, to visit Auntie Lou. 

As Auntie Lou actually lives in a very lovely but tiny top floor flat in a fairly inaccessible part of London, we compromised by meeting her in slightly more central London, and putting wheelchair access to historic transport to the test. 

First stop, train from Didcot. So far, so good. Had to resist being put onto an earlier train our off peak tickets wouldn't have been valid for, but apart from that, all well. And nice coffee at the station. 

No one meeting us as arranged at Paddington, but two helpful fellow passengers lifted A off the train for me. Score one for the manual wheelchair.  

Next stop, Westminster. Transport for London suggests a 15 minute journey if you can climb stairs. It had difficulty suggesting a sensible route for us, finding us several which involved multiple buses, and one which included a boat! We compromised on a 1 hour tube ride. District and circle with a carefully timed change to the grey line. Jubilee? I forget. Multiple lifts between platforms, at any rate. 

One happy tube rider. And one happy mother; the "small" gap between platform and train being definitely better negotiated by manual chair rather than power tank beast. 
London Eye. Big Ben, Houses of Parliament, history a go go. Crowds. Heaving, pulsating, stopping every twelve seconds to take another photo with a selfie stick crowds. And very helpful guides fast tracking us through the ticket hall and past the queuing hordes. 
Warm capsules, good views, no elevator musak, good times! 
Off. And anything rather than face the crowds on Westminster Bridge again, so quick diversion to a side stress for an excellent curry lunch, and then a Duck Tour. 
Very very definitely not in any way accessible. And I won't be carrying her up wet metal step ladders again if I can help it. But worth it, once, for the joy and silliness involved in taking a big yellow bus trip into the river and out again. 
And seeing Big Ben from underneath instead of on top.
More tubes. 
A cable car 
With very beautiful sunsetty views slightly further down the river. 
Docklands Light Railway. 
Hammersmith and City. 
Back to Paddington for a particularly well equipped changing places loo. 
Before catching our regular train back to Didcot, having been bumped up to first class because someone else had thoughtfully booked out the standard class wheelchair spot. 
Free coffee for me!
Camera phone for a tired girl. 
Who, me? 
Ramps waiting for us at Didcot, back to our bus and home. 

And sleep. 


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