Behind The Child

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To The New Parents.

Fri, 05/06/2016 - 10:59
Congratulations! You might not feel like celebrating right now, and that's ok. But I want to congratulate you anyway, onbecoming parents, and on this precious bundle of life your child. 
I'm sure this isn't imagined how your birth announcements would be. I'm certain you didn't expect your early weeks to look like this. And I don't underestimate the heartache you're going through as you try to work out what kind of a future you're going to have. 
I want to say this. You have a future, and it is bright and glorious. If miracles happen, then alleluia, praise the Lord, and I know all Heaven will be rejoicing with you. But you know what? If miracles don't happen, then alleluia, praise the Lord, and all of Heaven is still with you. 
Whatever happens tomorrow, next week, next year, you are on a journey that is going to be unimaginably awesome. Does that sound tactless? Possibly, and that's why I hesitate to send this. But I think maybe I still need to say it. 
You will see life more clearly than ever before. You have already tasted that clarity - that first precious unassisted breath, followed by another, and another, and another. They took too long, and maybe you weren't able to be there when they finally happened. But they did happen, and they are worthy of huge celebration. 
I need to tell you, that taste for celebration; itss addictive. All those milestones parents take for granted; they are going to be so infinitely precious to you. But I want to talk about the inchstones. The first time that tongue sticks out, the first time those eyes track a light, the first time fingers twitch under your touch. And there will be hundreds of those. And whether your child shakes off this early start and becomes one of those "this exact thing happened to my friend's son and he's just got a first from Oxford" children, or whether your future looks more like my past, you will find things to celebrate. 
And it will be ok. It will all be ok. Even when it's not - and there were many times in Imi's life when things were very very not-ok. But our God is bigger. And He has this. And there will be a rightness to this wrongness, a peace to this panic, and asense of wonder even in the wrongness. 
I could tell you things which might be helpful. I could say that Amana had a feeding tube until she was 9, that I was told she would never talk, sit up, support her own head. I could tell you her brain damage was so severe that she wasn't expected to survive infancy. 
I could tell you that Imogen's cerebral cortex was destroyed at birth, that she should not have been able to see, think, communicate, understand.
I could show you so many of our friends, with so many varied and complex lives, in the hope that you could find some resonance with some of them. But I'm not sure that's what you need right now. 
And so instead I'll just say this. You're going to hear a lot of things from a lot of different people. Some of it might be helpful. Some of it is going to be horrifically hurtful and insensitive, and I wish I could spare you that. You will learn to dance again. It's a different kind of dance. But it's beautiful. 
Congratulations on your precious, precious child. It is going to be ok. Our Daddy says so. 

Here and Now

Sun, 05/01/2016 - 17:37
My mind was wandering during the sermon this morning. Don't judge me; there were reasons. The passage? The beginning of 2 Corinthians 5. I was struck by the first verse; "For we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in heaven, not built by human hands."

I don't think I quite followed all our preacher was suggesting. It seemed very complicated. Whereas, to me, it's very simple. I've put one of Imi's favourite songs below us here, together with the lyrics she loved (she preferred the Downing Family version, but I couldn't find that online). Glory to God I'll have a new body, changed in the twinkling of an eye, when I wake up to sleep no more. 

Walking with Imi, particularly in her last month, was to walk with her as she walked towards Heaven. She was absolutely certain that's where she was going, and I'm equally certain there was a measure of Heaven already present in her room. She slipped between here and there, between here and eternity. The canvas of her earthly tent became a burden to her; we patched it and tended to it, but she was so keen to shed it. 

And I am certain that she took her final not-really-a-breath-because-it-was-just-too-shallow once she was already standing on Heaven's shore, shedding this tent as she stepped into eternity. She was not left unclothed, not left suspended, she is not currently somewhere in a state of waiting, but is fully completely and perfectly Imogen, whole and new and forever praising. She is with her sister.

Our God is the Lord of time (Potentate if you will; ineffably sublime. I have hymns in my head tonight). He rules time; He is not bound by it. 

Time matters immensely to us. We measure not just the days, but the seconds; I get twitchy when my kitchen clock is two minutes out. It matters to us, because we know these lives are short. Because we know they are finite. But in an infinite eternity, how can time have any relevance at all? 

Heaven touches Earth; we all have moments when we know this. Times when the curtain is thin, where we can almost glimpse the angels and archangels and all the company of Heaven. Where echoes of joy ring out across our souls, moments of true deep happiness. It's there in the wonder of an infant's first smile, in a true belly laugh with a trusted friend, in the bliss of a beautifully crafted sentence in a truly lovely book, in the glorious rainbow after the darkest storm, in the galaxies shining on the darkest night. 

And it is entirely possibly I totally misunderstood what our preacher was saying. My mind was wandering. But on the offchance that what I heard was what was actually said, I'd like to reject utterly the idea that all our dead are simply waiting, waiting until the gates of Heaven open on that last day. Because there's no way at all Imogen was trudging towards a waiting room; she was running to her King. 

Tia







What a glad thought some wonderful morning Just to hear Gabriel's trumpet sound When I wake up when I wake up To sleep no more (to sleep no more)

Rising to meet our blessed redeemer
With a glad shout I'll leave the ground
When I wake up (when I wake up)
To sleep no more (to sleep no more)

When I wake up some glad morning
To sleep no more jewels adorning
How happy I'll be over in glory
On the beautiful shore telling the story

With the redeemed of all the ages
Praising the one who I adore
When I wake up (when I wake up)
To sleep no more (to sleep no more)

Glory to God I'll have a new body
Changed in a twinkling of an eye
When I wake up (when I wake up)
To sleep no more (to sleep no more)

Leaving behind all troubles and trials
Bound for the city up on high
When I wake up (when I wake up)
To sleep no more (to sleep no more)

Tenby time.

Mon, 04/04/2016 - 04:44
I think this will be our eighth trip to Tenby. 
Which makes it Amana's sixth trip. 
This year, we are staying in the Wheelabout. A house I first stayed in with my big girls, long before we ever thought about adding an Amana to the family. 
A hundred different memories. 
This year. Last year. A few years ago. 
And a hundred different memories, precious now but deleted from my phone as being repetitions of a dozen different themes. I had that luxury then, forgetting that one day there would be no more new ones. 
It's hard. Two girls echo through the walls here, and it isn't the two girls who are currently sitting in the room next door to me, complaining about having to be quiet as the rest of the house sleeps. 
And I'd forgotten how hard it might be for Amana too. Lining up to take a photo in the place we've posed before, often with different friends, but never without her big sister. I wonder if I underestimated how hard it was for Imi, to come back here without Yelena in past years. And I wonder whether we should go to new places, find spaces to be where memories don't trip us up around every corner. 
But then Amana comes out of her grumps to remind me of somewhere else she'd like to go. And loses her fear, puts her face in the water, and submarines her way across the swimming pool with just three breaths. 
We have been here with family, with friends, and it is different and the same every time we come. For a girl who has seen too much change, it is safely familiar, and there is joy in the remembering. Security in planning each day, with a hint of panic still when memories of her sister swim to the surface, despite her best efforts to squash them down. 
Maybe it would be kinder to find somewhere new. But maybe too, she needs this familiarity, these stumbling stones across her path, these reminders that her sister did exist. 
And because her life is never that simple, in addition to being busy working hard not to remember her sister, she now has to make decisions about further surgery, an op which would probably improve her daily life, but would be fairly unpleasant in other ways. And it's got to be her decision, and that is a lot to place on a grumpy grieving-although-she'll-never-admit-it eleven year old. 
So here we are. And we will have a good time. Zoo trips and pottering around town and racing wheelchairs on the beach. Friendship and fresh air. And echo shadows of my two big girls around every corner. 


Three.

Wed, 02/17/2016 - 08:54
Three months ago today, I phoned Helen House in desperation. Imi was in agonising pain, untouched by morphine, unsedated by midazolam, brief relief with strong anti spasmodics. 
Helen House suggested a) stopping trying to feed her, and b) bringing her in. 
Which means that three months ago yesterday was the last time I attempted to feed Imi a meal. A quarter of a year ago. 
We'd had discussions in the past. We had acknowledged Imi was having increasing difficulty absorbing her feeds. We'd switched to bland blends, and back onto formula, halved her quantities, given her days of rest with no food. 
But three months ago today came the realisation that this was it. End of the line. A body worn out. 
We stayed in for a couple of days, time to adjust to this new normal. And then came home. And the rest, if you've read this blog, you already know. 
Pain. Exhaustion. And then peace. Peace beyond understanding, a peace which surrounded Imi and sustained her for the next month, and a peace which persists and helps me to carry on without her. 
Just twelve short weeks ago. And yet it feels light years away. 
Eleven weeks ago then, I was sitting with Imi on my lap for what would turn out to be her last cuddle at home. Our lovely respite team arrived, and Imi swapped to sit on our nurse's lap. And I came to The Barns Café, where I had a drink with a friend, whizzed around a Cheistmas craft fair, and sat back in my favourite cosy corner for another drink, when I got the call. And Imi had started fitting, run through all her rescue meds, and needed help. 
Today that same nurse is back in our house, giving respite to Amana. And I am back here at The Barns, with my knitting. 
I was knitting a shawl then. I'm knitting one now, the third to the same pattern. The first I finished sitting beside Imi, pausing to hold her hand or cream up her skin, as she gently got floppier and drier without fluids. The second I started then. And the wool for this one I ordered still sitting at her side. This pattern is in my fingers now; I can knit it without thought, losing myself in the intricacies of the lacework. I'm not sure I will be able to let it go, to learn a new rhythm on my needles. This wool connects me to those weeks. 
Three months. Three shawls. Three hours' respite. Enough for Amana to welcome a change of face. Enough for me, to be able to sit and breathe without my little shadow, working so hard to fill the silence caused by her sister's absence. But a stark reminder of the hole we have now - three hours for the first time in three months, rather than three visits a week for so long. My sociable child is struggling with the emptiness of the house, although she is still working hard never to acknowledge the gap. 
An utterly self indulgent post, as I sip a chai latte and watch families of giggling children from my perch on high, trying to avoid overhearing a quiet conversation in a different corner, and being baffled by the rules of Killer Bunnies over the way. Life goes on. Except, sometimes, it doesn't.