Behind The Child

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Updated: 25 min ago

Small pleasures.

Wed, 01/28/2015 - 08:24

An hour alone with good coffee, a comfy seat, knitting, and snippets of conversations floating up from other café patrons. 
"Biblical corporate business""Jane Austen's massage parlour" "Brainstorming life""....this big!" "My Lithuanian bible cover"
So many conversations, so many ideas, hopes, dreams, joys and sadnesses. And me, not a part of any of them, enjoying fragments of other people's lives. 
A different world from our home setting, stepping away from nurses and housekeeping and admin, into the conversational kalaidescope. Free to think, to remember a special boy and girl today, forever linked and now two years free from the broken bodies which bound them here on earth. 
"College""I have NOT been to India""A thousand and five on the right.""Can you walk?" 

Running away (with the children)

Fri, 01/09/2015 - 08:27

Back to Beechenhill farm for another beautiful way to end the old year and start the new. Friends, fires, sledging and walking and just sitting cosily snuggled enjoying not needing to watch the clock. 
Happy New Year! 

Running Away

Mon, 01/05/2015 - 17:41
I love being a Mum. Specifically, I love being Mum to my amazingly awesome and generally all round excellent girls. I love making them smile, I love spontaneous hugs from one, and a gentle lip twitch from the other. I love eliciting the sigh I get when I finally manage to tweak tender hips into just the right spot, I love walking into a room and knowing how to fix distress, and I love sitting down at the end of a long day, listening to the hum and wheeze of ventilators and oxygen and pressure relieving mattresses, and knowing that I have achieved everything I needed to do that day, and that the girls are comfortable and settled and asleep.

I also love being me. Sitting down at the computer and bashing away at the keys, even if it's something I do far less often these days. Sitting on an exercise bike watching rubbish TV and eating up virtual miles whilst watching bits of my body slowly shrink. Walking with a friend and finding such quiet beauty in the countryside all around us, watching England turn from green to gold to white hoary frost and back to green again. Drinking tea upstairs in inaccessible coffee shops, just walking out of the house and leaving the girls safe in the hands of nurses, carers and teachers who know them and love them and have all the tools they need to keep them safe.

I can't remember who suggested it first, but my friend and I were talking back in the Spring, and "wouldn't it be cool to go to Iceland" was definitely mentioned. And we spoke to Helen House, and we did a fair bit of sitting in coffee shops with laptops doing research, and things came together, and in the summer we booked ourselves three nights in Reykjavik for November.

And then suddenly, after a fairly hairy September with a very poorly Imogen, it was November, and the girls were in Helen House, and my friend and I were on a plane flying a thousand miles away to a small and cold island.

We had three nights. Three nights in a hotel, with no need to give meds, turn bodies, soothe aching backs or give breathing treatments. That in itself would be luxury enough. Three days of not needing to worry about what to feed anyone, of finding a cafe once we were ready to eat (or cold and needing to sit down for a bit!), three mornings of coffee fresh from a machine, with waffles and watermelon and pickled herring for breakfast, and lovely grown up conversations with no interruptions. That in itself would be more than luxury enough.

But we had so very much more. A day spent wandering around the smallest and most northerly capital city you could ever hope to find. Ten miles walked around the city without even noticing it, without small people complaining of boredom and leg ache. Horizontal sleet, brilliant sunshine, a rainbow in a C rather than the more traditional inverted U, stars, tin rooves, wool shops, and silliness.

A second day spent being driven through the first snow storm of winter, stopping at a geothermal tomato farm (random!), Geysir (clue's in the name), and Thingvellir national park, home to parliament for a thousand years, and home to the mid atlantic rift. Standing in the gap between Europe and America, at the point where Iceland will one day be torn in two. And then a Northern Lights hunt. Cold, so cold. But so beautiful. Wild, peaceful, God's amazing creation seen so clearly during the day and set to dancing for us overnight. Amazing.

And then a final morning at a geothermal spa, summed up best by my friend. "Cold, COLD COLD!!" as we stripped to wet swimming costumes in 0 degrees C, "Hot, HOT HOT!!!!" as we clambered into the 40C water, and finally "Ah that's nice" as shoulders went under and the cold and the hot were replaced by an all-embracing warmth. Blue white water which remained blueish white even when held up in cupped hands; the world underneath totally hidden so only heads remained. Pots of frozen algae surrounding the pool and being painted on faces (and bald heads), so all fellow swimmers appearing as anonymous kabuki style heads.

Then out, dressed, back on a coach and return to the airport ready for the long flight home. Driving Miss Daisy on the in-flight screens, sniff sniff. And home, with heads full of meat soup, delicate salmon, smoked lamb and lava bread, geysers and volcanoes and rift valleys and the heavens dancing. Knitting projects and cameras full of photos and souls utterly refreshed from the break.

Home, to two girls who had had a wonderful time themselves. To an Imogen who has found her joy in life again, and who has a sparkle back in her eyes which has been missing for so long. To an Amana who had done all her Christmas shopping and been so pleased with herself for it.

Home, to two girls who were determined to make sure I didn't disappear again, by demanding attention at regular intervals throughout the night. It's six weeks now; I haven't yet had an unbroken night's sleep. Home, to a to do list longer than the packing list for Helen House. Home, and back into the world we live in, where healing doesn't always come to friends, where other friends struggle for direction, where one of our special children dies on Christmas Day, and where the cat with a heart condition now appears to be developing a cough.

Doesn't matter. We had those days. Those three nights. God kept his word, he kept my girls safe, my friend's family ticking over neatly. Everything we asked for during those days, he gave to us. Snow, Northern Lights, peace of mind, rest, abundant joy. And it was all very good. Soul food, and six weeks later, it's still feeding us both. Sometimes, running away is the right thing to do.


Happy Christmas!

Thu, 12/25/2014 - 16:38
Imogen woke us all at 6 this morning. Not fitting, not in pain, just very wildly excited and ready for Christmas!

I've been a parent for I think 15 Christmasses. And this is the first time I've not had to wake at least one child in order to be ready for church. To have two girls, both smiling, both laughing, both alert and aware of what day it is is definitely the best Christmas present I could ever have.

And Imi has been well for Christmas. CPAP off all day, minimal extra pain relief required, no seizure meds, minimal other rescue meds, and one very happy, LOUD, girl.

As an extra gift, she seems to have discovered her feet again. We removed her foot switch a while ago, as she didn't have the energy or the inclination to use it any more. So long ago, in fact, that her nurses have never seen it in use. Today, she found her feet. More than once, I removed her feet from my Christmas dinner - feet on the table is a definite first! And OK, she wasn't laughing, but she was smiling, she was happy, and she was busy. And so much better than she was this time last year. I'll take it.

I hope you all had as good a Christmas as we did.
Tia and the girls

When The Healing Doesn't Come.

Sat, 12/13/2014 - 18:07
I have friends on my mind. Multiple friends.

I don't think any of my friends are entirely unscarred; we are, mostly, the walking (or wheeling) wounded, limping along and praising God. Ignoring the mountains and tripping over the molehills.

Bereavement, disability, infertility, chronic and incurable health conditions, abuse and intolerance and marital breakdowns and general horrific life stuff. I think we're all well used to the idea that following God doesn't magically inoculate anyone against major life woes. I think we've also all met people who have experienced the miraculous; illnesses turned around, lives changed, tumours vanished. Hallelujah for each and every single one, and this post isn't intended to criticise any of the good stuff.

But I'm thinking tonight of the modern day Jobs I know. Families (more than one) who have adopted a child, only for that child to die, or be diagnosed with a terminal illness, and not just once, but twice or even more. Families struggling with the needs of their disabled child, only for the parents to develop health conditions of their own, followed by siblings of the disabled child. Families where the death of one child is chased by the illness of another, woes upon woes upon woes. Where the foundations of family life are pulled apart, one brick at a time, until only bare earth remains.

How is it possible that I know of more than one family where a sibling to a profoundly disabled child has lost their own sight?

I could trot out some platitudes about how God doesn't give us more than we can handle. But I'm pretty sure most of these families know exactly how true that isn't, and know how much more than they can handle is being thrown at them, day after day after day. I could try saying that where there's life, there's hope; but I also know how hopeless some of my friends are feeling right now, and honestly? I'm not sure I'd be hopeful in their situations either.

There's an assumption that some kind of major negative life event ought to cover you. That one Really Bad Thing ought to be enough, and that, having been through the worst, the rest ought to be better and better. And I see so many families drowning under the evidence that it really doesn't work that way. Whilst other families go through something similarly awful, or significantly less awful, and then having been thoroughly scared by the what might have beens, go on to live a beautiful and rich and altogether lovely life. Which is great, but not for those who are still swamped by the ever rising tide of awful.

There's a lot of pressure on these families to somehow make it all be good. To find some kind of simple meaning in what's happening, to give hope to those around them, to protect their friends and supporters and acquaintances. I'm sure no one means to pile on the pressure. But every "Have you tried...", every "What about...", every "Oh a friend had that and they did this" just piles on the torment. Even a simple "So how's it going?" is exhausting when the answer is the same, or worse, than it was the week before and the week before that, and the week before that. And the week before that. Even if it's the last thing on the asker's mind, the act of dashing the hope for good news, having to recap the awfulness, bringing the situation back into the forefront of the mind, when it might have temporarily been pigeonholed behind closed doors to allow for a brief moment of thoughts of something else is just plain exhausting. When it's not devastating.

Waiting on God is hard work. Railing against God is even harder work, and possibly not helpful, but I do know He can take it; if his hands can hold the whole world, then his shoulders are definitely broad enough to absorb all the anger and sadness and frustration and fury and fear that's thrown his way. And I'm absolutely certain He'd rather hear all about it directly, than hear us all muttering to each other about the generally massive unfairness of it all whilst trying to avoid laying the blame at his door. And that's possibly just me, maybe my friends are much too mature to be doing any of that.

It's hard, being helpless. Knowing that absolutely nothing I can do can help, or change what's happening. I can watch Imogen on a difficult day (and there are some very difficult days now), and wonder how many more breaths she has left, scared that I might be counting her very last ones. And I can watch her on her better days, and celebrate the singing and the shouting, and revel in the smiles. And know that I have too many friends who aren't having any better days right now, and my own joy is bittersweet.

In my head, these past few days, the phrase "This is the year of The Lord's favour" (Isaiah 61). And this has been an amazing year for me. God is good, God has poured out amazing things on us this year. Deepening friendships, abundant rainbows, and two daughters still with me; not something I expected to be the case this time last year. I'm profoundly thankful, and profoundly confused - how about a little less for me, and a little (or a lot) more for my drowning friends? I wish I understood.

A story from a speaker back in February. I'm sorry, I don't remember who. The essence of the story; a baby with meningitis, a night of prayer and torment in hospital, a miraculous turnaround, and a family singing and praising God in the morning as they came home with a healthy baby; nice neat prayers being answered. And the question "Would you still praise if you'd been coming home without your baby?" My friend and I - who have both lost children - looked at each other and answered "well we did." Because we know, even when we don't understand, that God is Good. All the time, even in the moment of the unthinkable awfulness. And He remains good, even in the decade of awfulness some of my friends are living through. God is Good. It's a good job it's a short sentence; when things are hideous longer convoluted thoughts are just too complicated.

I don't understand. It isn't fair. My friends have suffered enough. My girls have suffered enough, if it comes to that, although this isn't really about them.

I want to make it better. I can't. And by trying, I only end up making it worse. All I can do is pray.

A friend will text me occasionally at three o'clock in the morning. One word; "Pray." I don't need the details, I don't even need to know which friend it is (and I don't always, as she sometimes has to borrow someone else's phone). Doesn't matter, because God knows exactly who and where and what and why and how. Sometimes a friend needs to know I'm praying for them. Other times, I think knowing that you are being prayed for adds its own pressures; it is a very hard thing to believe yourself to be somehow responsible for the faith of others. And unanswered prayer is a hard thing to live with.

I do know this though. That as certainly as God is Good, no prayer is ever ever wasted or unheard. I may never understand the reasons why some prayers are answered in such awesomely amazing ways, whilst others appear to be flat out denied (and I'll never believe it's as simple as Yes, No, or Wait - the God who intervened at the Tower of Babel surely has unlimited vocabulary up his sleeve). But my own understanding isn't what's important here. God is Good and Prayers are Heard.

The Spirit of the Sovereign Lord is on me,
    because the Lord has anointed me
    to proclaim good news to the poor.
He has sent me to bind up the brokenhearted,
    to proclaim freedom for the captives
    and release from darkness for the prisoners,
2 to proclaim the year of the Lord’s favor
    and the day of vengeance of our God,
to comfort all who mourn,
3     and provide for those who grieve in Zion—
to bestow on them a crown of beauty
    instead of ashes,
the oil of joy
    instead of mourning,
and a garment of praise
    instead of a spirit of despair.
They will be called oaks of righteousness,
    a planting of the Lord
    for the display of his splendor.
4 They will rebuild the ancient ruins
    and restore the places long devastated;
they will renew the ruined cities
    that have been devastated for generations.

Speedy(ish) brownie bottom cheesecake

Mon, 12/01/2014 - 06:32
Step 1. Offer to bring a pudding to lunch. Step 2. Forget until morning. Step 3. Decide only a brownie cheesecake will do. Step 4. Find multiple recipes, all of which require multiple stages of baking, multiple hours cooling time, or multiple ingredients not currently in the house. Step 5. Find some promising, nearly there, recipes, combine, increase, simplify, and come up with this. 
Melt 4 oz plain chocolate with 5 oz butter over a very very low heat. Dump a teaspoon of vanilla essence and 8 oz sugar into the saucepan, stir. Add 2 eggs, 2 oz plain flour and a goodly sprinkle of salt, stir until smooth. 
Pour into bottom of a greased ten inch loose bottom cake tin. Chill in fridge (or freezer, if you're a fast worker) whilst making the cheesecake layer. 
Preheat oven to 160C. 
Take 450g cream cheese, 2 eggs, a gloom of vanilla bean paste, and a big dollop Greek yoghurt (in this case, fat free Greek yoghurt, and half full fat, half low fat cream cheese as that's what I had. I might have gone for sour cream over yoghurt if I'd had the choice). Whisk until smooth. 
Pour very gently over brownie base, then bake at 160C until it looks about right. 57 minutes in this case. Turn off oven, leave cheesecake in to cool. Panic slightly about time, remove before totally cold and put in garden to finish chilling. 

Pictures. And words.

Sun, 11/02/2014 - 18:10
Special kids camp 2015. Catching up with friends Home in time for an assessment by Dogs for the Disabled. Verdict due three weeks later, it's now 2.5 months; I should probably chase that. Grannie's birthday. And a visit from the Yorkshire cousins. Superhero day at Godzone holiday club. Walks with the mad mud and chaos beasts. Catching up with friends againMaking the most of it!Getting together for a very special Baptism. And spending time with the Baptismal girl. Hard at work polishing domestic skills (and burning a finger, causing me a phone call from school to explain the injury). Our own home based bake off. And a very poorly Imi, who had a really good summer, but hit the end of September with a very nasty chest infection and massively prolonged seizure, earning her an ambulance ride to Helen House, to check out the facilities. Eyes open here for the first time in 48 hours, sleeping off the heavy duty meds she needed. Harvest time - redcurrant jelly. And back to Helen House for a respite stay. Old treehouse and new computer room. More harvest, blackberries gathered on a walk we did without the mad mud beasts. Finally, after being urgently referred in April, and after being in pain for a very long time, Amana had surgery to replace the loose screw in the rod at the top of her spine. A small part of our apple harvest. And another of Amanas show-stoppers. We are working on presentation. 
And on not eating it all before it's finished. A busy but oddly photo free half term holiday, until yesterday, when Imi decided she needed to make chocolate brownies. Amana said she would help, I vacated the kitchen, and returned to this, and "I helped Imi lick the spatula, Mummy." 
She's been on CPAP ever since (with a short break for bread sauce, stuffing and gravy at lunch today), but she would definitely say it's worth it. 
And so that's us. Amana is starting to be in less pain now her spine is stable again. One month on, we are still dealing with the stitches and waiting for the steristrips to fall off. But she is mostly going through the night without needing extra pain relief. 
She has started year 5 at school, and is finding it hard and tiring work. Very happy at school, but very unhappy about the idea of getting there. Struggling with friendships, desperately wanting to be independent, helpful, and utterly dependent all at the same time. It's an interesting mix. 
Imi really did have a great summer. Two weeks camping, in one of the coldest Augusts on record - six degrees (Centigrade, for my US readers!) on one night. And no chest infections! Very very happy afternoons snuggled up with her best friend and visited by plenty of others. Good days, good nights, and a quietly peaceful balance with some difficult moments but mostly really lovely. 
And then September came, and a big chest infection came out of nowhere, and suddenly we were reminded just how brittle she is. She's getting over it now I think maybe, over a month later; we've just had three days in a row where she's been off CPAP all day. But then we've had three days where she's barely been off it at all, where her SATs have been rubbish, and increasing times when nothing but multiple doses of morphine and midazolam will help quiet her breathing. 
Our GP visits regularly, our respite nurses are a great team, we are surrounded by all the support we could wish for. And she is tired, and some days we can see that really very clearly. 
But, although I haven't heard her laugh for a few months now, she can still shout loudly enough to upset her sister and disrupt conversations. She doesn't kick a switch to communicate any more, but she can still knock syringes and iPads off her lap with a smile. And it might be for just a few moments at a time, but she's still got her non-verbal sarcasm down a treat, she's still singing away to her Mennonite hymns and to the Downing Family whenever she's got the breath for it, she's alternating David Suchet reading the bible with Anne of Green Ganles as a change from the chronicles of Narnia, and she's enjoying the bits of life she's awake and breathing well enough to notice. 
She finished a beautiful piece of glass in the summer, and has a papier mâché owl on the go just now. And then she wants to do something with an old clock. I'm not sure what. 
So that's us. In more depth. How are the rest of you? 


Sun, 11/02/2014 - 17:25
We are still here. Apologies for the long silence. A week becomes a month, a month becomes a season, and then posting anything at all feels like a really huge deal. 
I might go back and fill some gaps, I might just post from now, or maybe this will be it for another few months. Sorry for the lack of a plan. But I know people have worried, so I thought I'd just pop up and say hello, still here, still breathing, and life is precious and good. 
Thank you for your patience, if anyone is still reading. Tia