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 CafĂ©.  

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, sautĂ© 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. 


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