Monday, 4 April 2016

Tenby time.

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. 

Wednesday, 17 February 2016


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 CafĂ©, 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.  

Sunday, 17 January 2016

This Is The Day

Browsing blogs the other day, I came across a sentence written by a man whose wife is dying of cancer. I can't find the blog, I can't find the exact quote, but it boils down to "This is the day which The Lord has made. It must be, because I would not have made a day like this." 

It stuck. I read it for the first time as the nice oxygen lady came for the last time, to unhook the concentrator from the great long line, to wrestle the giant cylinders from the depths of the wardrobe, to pack up the mini cylinders and the chargers, and to leave me with a hole and a pile of gently used tubing. 

I pondered on it as the nice man from Millbrook came to dismantle the bed and heave it into his bus. And as the courier came to pick up the feed pump. 

And it came back into my mind powerfully this morning, as I sat in the short pew, in the space beside the gap marked out with gaffer tape on the floor, arms empty and nowhere to hang my bag. 

I did not choose this. 

I did not choose not to be exhausted by the end of every day. I did not choose to have more space in my house. I did not choose to have an only child. It was not my choice to be able to sit through a meal uninterrupted, to sleep without listening for seizures, to sit at home in an empty house, and for this to be the norm not a special treat. Yet this is the day that The Lord has made. 

I did not choose to ache with longing to hold my girl just one more time. I did not choose these empty, relaxing hours. I did not choose this pain. But this is the day that The Lord has made, and I would choose this all over again, because all these exhausting stressful confusing days were so completely worth it. 

I would not have made a day like this. I would not have made a day like any of the four weeks since Imi died. I probably wouldn't have made many of the days in the past few years either. But I wouldn't want to be without them. 

Hard, but beautiful. Polished diamond days in memory. I remember. Shining bright, and stabbing pain. Hard. But beautiful. 

And it occurs to me that I would not have created many of the days we had together. I would not have created days watching Imi struggling to breathe, days counting the minutes between morphine doses, earlier days waiting for surgeries to finish and counting the minutes until we were together again. But they were the days with The Lord made, and they are days I treasure now; times we shared, when my heartbeat child was with me still. Days I would not have edited out of her life, for then her life would have been measured in weeks and months, not the years we were blessed with. 

This is the day that The Lord has made. Let me find a way to rejoice and be glad in it. 


Tuesday, 5 January 2016

Remembering Imi

When I first met Imi, she was completely and utterly Little Girl Lost. She didn't know who she was, where she was, what this world was meant to be.

She knew she was hungry, but she struggled to suck.

She knew she was tired, but seizures snapped her body into wakefulness.

And she knew love. She knew that she was safe snuggled into someone's arms, sucking on an adult's little finger with an intensity she never managed with either bottle or dummy.

And so I carried her. For two years, if she was awake, she was tucked up next to my heart, and perhaps the warmth of my body helped a little to lessen the spasms which twisted through her.

Right from the start, we were a part of a team. Her neurologist forever tweaking the balance between seizure control and sedation. Surgeons fixing bits of her body the spasticity pulled out of joint. Physios and other therapists encouraging her body into functional positions. Helen House providing a safe space so we could take time to just be a family, letting someone else juggle the meds and other regimes.

Imogen was a lot brighter than most of us realised. Incredibly limited by her body, she realised language had meaning when she was two. It took her another three years to find a way of making herself understood.

These were her golden years. Happy, small enough to be portable, we took holidays across Europe and Florida, and she loved the warmth and the attention. Roller coasters, cable cars, mountain railways and feeding dolphins. 

And illnesses. Prolonged seizures and spasms contorting her body into painful asymmetry. Chest infections from which she never quite recovered, each one leaving her a little bit weaker, with more breathing problems.

Finally, two and a half years ago, she had the illness I think of as her tipping point. She lost her laugh. Smiling still happened, but it was hard work. There was pain. A lot of pain. School became too much for her, crowds overwhelmed her, and despite the morphine, she began spending longer and longer in bed.

She was still Imogen. She still had her wicked sense of humour, accusing respite staff of locking her in a dark cupboard, taking gleeful pleasure in kicking small children. Not able to howl with laughter any more, still she would grin widely and shout a yes if there were ever a chance to insult a friend.

And she loved. She loved to lie beside her best friend. She loved to have Amana brush her hair, or rub her hands. She loved to lie in bed and listen to everything happening around her in her en suite house.

And she loved God. New Wine was a highlight of the year for her; she managed to be up and awake hours earlier than at home, in order to make the morning worship sessions.

In her long wakeful nights, she chose to listen to her audio bible or gentle hymns.

Even in her last week at home, no longer able to tolerate any kind of food, in huge amounts of pain, she was still very clear she wanted to come to church. And with every breath she could muster, she sang.

It would be her last outing.

Imogen was tired. Exhausted. After that Sunday, she went to bed. And she was very clear she had no further wishes. She did not want to make the long trek up north to watch her friend be baptised. She didn't want to see anyone, do anything. She was done.

She knew exactly where she was and what was happening. As she got weaker she could no longer open her mouth to say yes, but settled for very clear, intentional blinks. Even the morning she died, she was able to let me know the song she was listening to was important to her, and that we should sing it today.

There were other conversations. And then there was rest.

Maybe looking at Imi, you'd think her life was sad and grim, and maybe you question the point of it all. I'm standing here to say it was all completely worth it. There was so much love, so much laughter. She lived a life that was deep and rich and full of joy. Imi knew what was important. She had a relationship with God that was deeper than many of us will ever know, and she was absolutely certain where she was going and with whom. When the time comes, I hope I can say the same.

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. 



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