Eye of the storm

Faith's a funny thing. Faith let me treat Mog's big seizure last week, then leave her at school to go swimming. And then enabled me to leave her at the hospice for a long weekend, as I went off for a weekend a couple of hours away. That couple of hours is significant - thirty minutes is my comfort zone, my ability to get back to her bedside to give her the second dose of emergency medication, my chance to be with her before it's all too late. Helen House is the only place I can leave her when I'm more than thirty minutes away, and even then I rarely do.

Logically, I know that Mog is just as safe in God's hands whether I'm sitting right beside her or on an island with a lengthy walk and then a ferry and then a too long drive home to get to her. But whilst my head says "God's in charge", my heart says "My beloved child; what if she needs me?"

Which makes Sunday all the more precious.

Saturday was a beautiful day. It was a day with 1477 other women (and a few brave men in the band!), an appointment with God which we'd booked up in the middle of a different storm, in January. Make a date with God and He tends to show up. And there was worship, and there were tears, and there was teaching, and because it was my friend and I, there was a certain amount of inappropriate laughing too. But God made us, and God gave us both a shared sense of humour, and I think He might have been laughing too.

A message delivered so fast that I'm finding different sentences floating up now; sentences I'd somehow filed away to think about later whilst trying to keep up with the next thing Christy Whimber was saying. And a message I didn't entirely agree with, but like an apple; plenty of sweetness, a hint of sharpness, lots to chew on, and some pips to be spat out.

And a beautiful sunny afternoon, a walk along the rocks, and as bonus light relief from some of the heaviness of the day, a big black lab bouncing along the waves, exuberantly retrieving the most revolting tennis ball ever from the black salty water.

And then another lovely meal at our hotel, and then tears and honesty and openness and a ridiculously late night (Sorry my friend!), followed by a good night's sleep.

Sunday was supposed to be cloudy and cold and somewhat grotty; we had gone to bed knowing that we'd had the best of the weekend on Saturday. But instead we woke to streams of sunshine forcing their way through the gaps in the curtains; a perfect day for our trip to the island.

And not once did I stop to think about how far away from Mog I'd be. After a wobble on Saturday night, I woke up without any of the "what-if she needs me"s on Sunday. Just knowing she was safe in God's hands, and in the hands of the hospice staff, and not even thinking very much about either girl, except to be thankful for them.

And the day was a gift. I think God likes to give us things, and on Sunday He just kept on giving. We had a slow start, but still managed to catch the first ferry of the morning. And the sun blazed down on us, and the water danced, and we landed on beautiful Brownsea Island. We walked through Scouting history, and we were surrounded by outstanding beauty, and the sun shone down on us. The ground was soft beneath our feet; moss carpets and bouncy clay; the ultimate in easy walking. I had forgotten how good it is to walk without either pushing a heavy chair or carrying a heavy backpack. And my friend carried our water and money, so I had nothing but my coat to hold me down.

It was a day for singing, a day for tree climbing, a day for dipping toes into icy cold water. A day for discovering that my friend's geocaching habit can actually be quite fun (Yes - I apologise to all of you for being rude about it in the past). A day for nearly being savaged by an angry peacock, a real "Taste and see that the Lord is good" kind of a day. A red squirrel. Birds. Scouts camping where Baden Powell held the first ever Scout camp. Bell ringers in a tiny church. Pink trees, blue skies, steep paths climbed gently. Laughing and smiling and talking and standing together in silence.

Finally time to start thinking about coming home. And so we meandered down to the ferries again, and, the icing on the cake, our own private upper deck (OK - the wind was up and no one else was silly enough to want to freeze) and so our own private tour around the other islands in the harbour. Sitting freezing feeling the force of the wind, and realising that what we'd expected to be the first step towards home was in fact the icing on the cake, an extra portion running over. God is good.

A clear run home, and a slow walk back to normality. The chance to get to an evening service (happens once or twice a decade), a peaceful night, and then a different kind of busy day on Monday.

And then back to reality with a bump and a bang and a whole lot of twitching. A Mog with a long long seizure - record long for her - and a Mog struggling either with whatever new breathing thing caused the seizure in the first place, or with whatever breathing thing the huge dose of diazepam has left her with. Hopefully temporarily. But a night full of alarms and beeps, and now a morning where she has woken up as I write this, but is unable to cope without her CPAP.

A morning where I'm back to "Help me, God, I don't know if I can do this", and a morning where the reality of the possibility of losing her (not immediately - I assure you I wouldn't be blogging if that were the case!) feels far too close. The sea is so wide and my boat is so small, protect me O Lord.

Is my faith any less than it was when I left here on Friday? No. Am I scared? Yes. But Sunday is a precious jewel of a memory, a bright shining reminder of how much God loves me, and how He is so much more immeasurably immensely everything than I can ever possibly begin to imagine. And tears and worship come hand in hand. This weekend we stepped briefly into the eye of the storm, and there was peace and beauty and perfection - and we were sheltered from the winds of life around us. And now I've stepped back into the storm again, and I'm breathless. Breathe on me.

Jesus, be the centre.
Tia

"But I didn't know what to say."

"Tell X I'm thinking of her," says the friend, the therapist, the person we speak to every week but have never gone beyond a five minute chat, "I was going to get in touch, but I didn't know what to say."

I've had a lot of those messages lately. No criticism; children aren't supposed to die before their parents, and there aren't neat formulae, and people don't want to get it wrong.

There are some people, of course, who manage to get it very wrong. A few pointers; please, even if you consider your pets to be your children, don't say you understand because you remember how awful you felt when your dog died. You may very well have felt awful, but the person you're talking to will hear you comparing their beloved child to a dog. And that's insulting.

Don't suggest "it's all for the best, really" - I can say that about my child, if that's how I'm feeling, but if you say it, I'll probably want to thump you. That might be irrational, but before you do say it, forget how disabled my child was and concentrate on the fact she was my child.  And imagine how you'd feel if it were your child. "All for the best" probably doesn't come close.

Now is possibly not the time to argue theology. If X takes comfort from the idea that her child has grown angel wings, Y might prefer to think that her child is now perfectly at rest, Z may consider her child kicking up a ruckus in Heaven, and P and Q may believe their child is sleeping peacefully until they will meet again. L might be wondering what body their son will inhabit next, and D may be worried about a lonely soul wandering the earth. Doesn't matter; bite your tongue and pray for their salvation if you like, but unless you're being asked for your opinion, be polite about theirs. Don't take away their comfort over matters of principal.

There is no wrong way to mourn. One family may seem to be buoyant and inappropriately hilarious; doesn't mean they don't feel things just as deeply as the family who are weeping and tearing their clothes. And whilst the parents don't have a monopoly on grief, they are the chief mourners. Don't expect them to be able to comfort you over your own deep sense of loss for their child.

So what to do, what to say, how to help?

Different families are going to want and need different things. Some families may wish to close ranks and need complete privacy, telephone silence. Don't be insulted if they don't call back - this isn't about you, it's about them. Others may be desperate for someone to take small children for a few hours to give the parents breathing space, or need constant company to avoid panic setting in.

Many will be so bound up in the bigger decisions that seemingly smaller decisions are impossibly hard. So make your offer of help concrete - instead of "what can I do to help?" or "now you let me know if there's anything I can do", think of something you can offer - "I have made an extra lasagne, would you like it for tea?", "I"m going to the shops, do you need milk and biscuits?" and don't be insulted if the offer is rejected. The energy involved in thinking about the every day stuff of living is just huge, when every part of your mind is occupied with the dawning realisation that your precious beloved child is not living any more. 

If you know the family in a professional capacity, especially from school or other settings where you regularly saw the child without the parents, now is the time to dig out those photographs. There can be no new memories, and that is hard. There will never be another breathtaking smile. But you may have new photographs, and they are so precious. Each snapshot another glimpse into the wholeness of the child. So dig through your records, and get those photos onto a disc. Don't print them onto flimsy paper that will fade and crumple, and dissolve when they get cried over; if you had them on your computer get them onto a memory stick and pass them on - you're giving the family the most precious gift you could ever imagine.

For everyone, once there's no more living to be done, the only newness will be the new memories. So if you have a particular memory of the child, write it down and share it. It doesn't matter how you spell it, what your handwriting's like, whether the card has the perfect picture on the front (although personally I'd avoid Happy Birthday ones), share that story, however small, and you've given the family another precious gift, another glimpse into their child's story.

"You kept her lovely," "He always looked so happy," "I could see the love between you," "I loved the way she did that thing with her fingers." All beautiful, precious gifts. Now is probably not the time to mention how sick to death of her screaming you used to get, or how you hated the marks the wheelchair made. Stick to the positive comments.

Don't be afraid to mention her name; don't assume that because I don't, she has been forgotten. There is no time limit on grief. My loss is less immediate than many of my friends, and most of the time now that is much easier to bear. But it doesn't get any easier after three days or a week, and whilst there is a sense of completion which may come when the funeral is over, it can be even harder in the days following, with no distractions by way of choosing the right songs and the correct order of service and making sure everyone has been kept informed. So keep in touch, and if your meal or your company or your offer to collect the children from school was turned down previously, gently offer it again. But again, don't be offended if it's not accepted. This is about what the parents need, not about your need to feel better.

Which feels like an appropriate time to mention physical contact. Dusty Elbows, in fact. If you wouldn't ordinarily touch the person you are talking to, please think about why you're trying to now. And if the person is backed into a corner, surrounded by friends, please consider the possibility that this is a deliberate strategy to avoid being touched by people after having overdosed on the touchy-feely hugs. Not everyone is a huggy person. And even very huggy people can reach hug overload. And I've not personally met anyone who would actively choose to have their knees hugged, especially by someone they've not previously met. If the kneecap is the only body part you can reach, think about whether a wave will do instead.

For the record, since I'm linking to Dusty Elbows, and since people reading that in the past have told me I've said I don't like hugs, I shall state here that I do, in fact, like a good hug. I'm not very good at offering them, though. But I don't like being touched by people I don't know very well, who wouldn't normally touch me, I don't like having my back stroked when I'm not expecting it, and I have a feeling I'm probably not the only person in the world for whom that is true. But - touchy feely, standoffish, middle of the road, whatever - it's not about you, it's about the person you're attempting to comfort. If what you're doing is causing them to stiffen, if they appear to be backing away, please let them run! Oh - and in the interests of accuracy, I should state the church coffee now is jolly tasty.

Do be ready to listen. And don't be surprised if what you're hearing is something totally unrelated to the child's death. Remember, chances are the person you're talking to has been talking to several dozen other people lately, and he or she may well not want to repeat the same conversation to you. Or they might - and they might, in fact, be repeating the same conversation you had with them last time you spoke. If you have the time, listen again. Sometimes repetition is important, and repeated affirmations in response are what the individual needs to hear.

Now is probably not the time to complain about your own child's problems in school, or how awful your cold is making you feel. Although actually, talking about school problems can be a nice diversion - but don't be offended if the person you're talking to fades out of the conversation. Probably time to offer more cake, or think about leaving.

You may have very clear ideas on what should be happening. You may have to bite your lip. If the family don't want to sue the hospital, or tell you that isn't something that would help, don't bring it up again. If the parents have chosen a funeral which is rather different to the style of funeral you have always known, consider it an opportunity to broaden your experience. You may actually have done this a hundred times before and have countless experience to offer. If the parents are fading out, or being carefully polite, think about changing the subject. You may also not be the only one with experience, and they may have asked someone else already. This isn't a slight on you - it isn't about you, it's about what's right for the parents. By all means offer, but don't try to force the issue.

Not every conversation has to be deep and meaningful. If you're queuing together for coffee, and you've already had the "I'm so sorry for your loss"/"I was so sad to hear about what happened"/"So this hasn't been the easiest month ever then?" conversation, a simple "Hello" might do it. Normal conversation is good too, a lot of the time. But if you've heard the news from someone else, and you haven't acknowledged it, then do offer sympathy. Not doing so leaves us wondering whether you know or not, and breaking the news is hard to do.

Be yourself. Death, despite recent statistics amongst our friends, is not infectious. You won't catch it by spending time with us. Well, not unless you're really annoying. But if you're doing something you do regularly, and you normally invite the recently bereaved parents, invite them. Don't be offended if they decline the invitation, but don't just assume they won't want to join in.

You don't need a special voice, and there's no real reason why your head needs to rest on one shoulder. The people you're talking to haven't suddenly become saints or angels either. They are the same people they always were; but with a grief which has rocked their souls. That takes some time to get used to - and it isn't something you can understand fully until you have experienced it. Which isn't about excluding you. It isn't about you - it's all about the other person.

So to summarise. Don't compare the parents' grief with yours over the loss of your dog. Even if it devastated you at the time. Don't assume that the grief is less because the child was disabled - if anything, the sense of dislocation may be even higher, because chances are the parents spent much of the day just meeting the child's complex needs. Not having to do that may seem to you to be a blessed relief. But the parents would probably give an awful lot to be doing that again. Don't assign the parents a time scale after which they should be over it. And don't use the parents to try to make you feel better yourself. Don't make it about you - it isn't.

Do respect the parents' personal space, treat them as people and as the people they always were. Do talk about the child, share your memories and any photos you have of the child, and be responsive to signs that the parents would rather talk about other things. If you have something practical to offer, do offer it - but don't be offended if any offer is declined.

And if you're reading, and you think I've missed something, or disagree with me completely and utterly about something, please feel free to add a comment.

Tia

Long Winter.

It's been a rough winter. Starting with the death of a friend's beloved daughter, whilst I was on holiday in Florida with another mutual friend. Since then, death has stalked our children, claiming child after child after child, one beloved child dying even on the morning of another child's funeral. Impossible. Three in a fortnight, two funerals in a week, and then, as a change of pace, taking an adult; a part of my childhood. Seizures, coughs and colds, overwhelming massive infections. Slow deaths, sudden deaths, at home and in hospital and at the hospice. Good deaths and hard deaths. But relentless, remorseless deaths and dying.

It's not good. My phone rings, it is a friend who usually texts, and I am convinced she is ringing to tell me about another child gone. She isn't.

I see a beautiful photographic display, donated to the hospice "with thanks for all the care received" - and I assume it is in memory of the child mentioned, that his battle has finally been lost. It isn't.

Mog fits. 30 minutes of tonic clinic seizure activity - that's 30 minutes of uncontrollable jerking and twitching, face contorted, breath distorted, not responding to the emergency medicines, and I am convinced that this time she won't stop, that her pounding heart will wear itself out before the seizure stops. And yet the twitching slows, her heart calms, her breathing eases, and the cocktail of diazepam and paraldehyde wins out. This time.

The Little Princess needs another major op. Mog could have the same op. except that we have decided it wouldn't be in her best interests. Different children, different underlying problems, different projected outcomes. It is the right decision for both of them. And yet - it feels as though I am condemning one and saving the other. Condemning one to a potentially shorter life by not operating, whilst giving the other a chance at a longer less painful life. And, conversely, condemning one to a long and complicated surgery, a slow and painful recovery, with a certain permanent loss of independence, whilst giving the other as long as possible staying bendy and supple and snuggly and hopefully pain free. I can't win.

Yesterday I had to break the news of Goldie's death to someone who hadn't heard. Five years, and whilst I think the whole world should know by now, and whilst most of the world thinks I should be over it by now, there are still people who don't know. Someone who used to play with Goldie, make cakes with her and read stories, who came to show Goldie her new baby. Goldie liked babies. OK, she liked wearing them as a glove (thumb in the mouth, finger in each eye and each nostril), but she did enjoy them. And the strange squeaking sounds they made.

And now I'm standing with friends who are living with the same loss, and there are too many of us. Too many mothers who aren't getting little thumbprint and scribble cards today, too many families with empty spaces where there shod be a most beloved child.

And mostly, it does get easier. That first searing pain and shock is over. I am used to the impossible, that my daughter is dead. But this winter has been crushing. I hope she's having fun. She was the oldest, and I can see her grabbing B and asking what took her so long; years of sitting side by side watching the smallest Sunday school children singing praise and now joining in properly themselves, always facing the Son, not turned to one side and abandoned by adults needing to herd a dozen three year olds. I can see her welcoming Mog's classmates, delighted to have support from the percussion department (there are tambourines in Heaven, right?). I wonder if she will meet Jophie, whether the two of them will know how much time his mother and I have spent chatting when no one living more locally was awake?

Timings have been perfect. God is, beyond any shadow of a doubt, very firmly in charge here. I don't understand the whys of it all, but I can God's loving hand in it all. New bodies, perfect and whole. No more pain, no more suffering. Tens of thousands of years to sing His praise. Set against that, this time without my Goldie, this time watching so many others joining her, is so short. But oh, it hurts. And oh, I am scared that I will lose the others too. And more of their friends.

And all I can do is cling closer, and know that my Father knows exactly how I feel, because He too has suffered this loss. And that never once, through any of this, have I ever stood alone.

Memories.

Memories are fickle things. I tend to think I have a good memory; I know I remember things from before we moved house, before I was two. And I seem to be far too good at remembering other people's wrongs.

So now I hunt through my memories for a particular childhood acquaintance, and although I can remember knowing D, I have only three mental snapshots.

I'll ignore the first two - no need to remember turbulent times. And concentrate on the third. A peaceful, happy boy, standing outside in the summer sun. It's a church youth picnic, Pathfinders probably, younger possibly, and we have eaten. Is that a barbecue smoking gently in the back garden? Possibly. We are all mellow, full of good food and enjoying that down time between eating an enormous meal and feeling ready for a game of Rounders.

And so D tells us all about his recent holiday. An adventure holiday, an activity holiday, cliffs and caves and ropes and Wales. And whilst I don't have specific memories, I do remember this is not the norm. D is shining bright, the centre of positive attention, and we are all to a degree envious of the good time he has had.

And now D disappears from my memory, brief encounters from time to time, and updates from his family. And whilst I may not see him, he remains a part of my childhood, and through his mother and my own, an occasional part of my life.

All this has ended.

And I stood by the roadside as his hearse went past. A child no more, but still a life cut short.

Tia

For T and J today

Funeral Blues



I wish I could be there, my friend.
Love,
Tia

The thing is...

So here's the thing.

Something odd has happened in an internetty group, and posts from several years ago have apparently become current again. Which means that members of this group believe my daughter has just died. And have been sending messages of sympathy all over again.

Not a problem really; I don't believe prayer is ever wasted, and whilst I feel bad that people were feeling bad on my behalf without need, I wasn't unduly upset about it.

And then I read back what I'd written at the time, and I had a hunt around for a decent news link so I could post it for anyone not sure what had happened. And there is too much news, too much analysis, too little Goldie.

This is the start of the sixth year without her. Only another year to go and she will have been gone for longer than I had known her. And I am losing her. I have a big collage I made, full of photos of her and her part in our lives. And I filled in the gaps with her scribble-talk; words and phrases she loved. And some things I haven't forgotten - sneaking up behind her and whispering "Bum!" in her ear and watching her dissolve into giggles is a sweet and precious memory. But other things are fading.

I can hear a voice saying "The fing is...."and I don't know. Is it Goldie, is it a child I used to know before I started fostering? I read back the phrases I wrote down, and I remember her saying them, but I had forgotten I had written them. I hear squeaks and see toes dancing, and I'm not sure if it's Goldie I remember or one of the many children in the school where I used to work. And even as I type this, I realise that tLP has been imitating Goldie, and not a child she never knew, when she lies in bed and flaps her arms wildly to make the bed creak. She knew Goldie for just a few months as a toddler; how can she remember things I've forgotten? Or not forgotten, but misplaced in my own mind, waiting for her to remind me?

Echoes.

Before I started fostering, I worked in a boarding school for children with profound and multiple learning disabilities. In my interview, I asked what proportion of the children there died; "None" was the reply. My first key pupil had a fatal heart attack on the floor of the school hall the very first week I was there. I see her twisted smile, remember her grin as we were introduced, and her long graceful fingers pointing in an entirely different direction from her chin, which was in a different place again to her feet, impossibly wrapped around each other as they were. Or were they? Am I seeing another child in a similar chair and conflating the two?

I remember three precious children, all with the same condition, one much frailer than the others. As two wandered around, needing a bit of support and balance, this third sat back, exhausted, in an armchair carefully padded to prevent sores. The others shouted and gesticulated, whilst he just gazed on with eyes which spoke volumes. And yet he lived six years longer than the healthiest of the three. More recently, another child with the same genetic quirk also died; the genetic twists which shortened life creating a child with such similar features that it was as if those three lived again. I remember sharp-toothed hugs, but from which child?

Two girls with the same name, both so similar to Miss Mog, both very different from each other. But when Mog was a baby, I could see her future self in either of them. And she does have aspects of both of them. I see echoes of one of them in Mog's smile, and echoes of the other in her grimaces. Both now dead.

One beautiful little girl with Leigh's who I met as a child, and who helped me to see where my future would lie. A precious precious child, much loved by all those who cared for her. And again, dead too soon. I have no problems remembering her smile or the way her body snuggled in for cuddles. And I can still smell the Worcester sauce and pasta sensory bath we gave her and another equally precious little boy. I don't remember his name though.

One child we only ever met at hospital or hospice, but who we met all too often in both settings. And who is now drumming in heaven instead of marching the hospital corridors. Mog's friends, my friends, my friends' children. Children from school, children from home, child on child on child. Children I only ever knew through their parents, and children whose hair was too irresistibly curly not to run my fingers through it at every available opportunity. Children I've holidayed with and children I've lived with, and how can I have lost count of them all?

And the thing is, it doesn't end. Children get frailer, get more complex, and this is happening again. And children die without any kind of a warning, and that will happen again too. And now I have tLP asking me "When I die, will I still be able to go to school?", and a tLP who has been present at too many of the informed consent discussions with Drs who forget that she may not actually need to be present when all the risks are spelt out, and who now asks if she's going to die every time she has an anaesthetic. And she knows too many children who have died, and she knows it's a possibility, and so she fights me and the anaesthetists all the way under. And I'm not convinced I want "I hate you Mummy don't make me no no no NO!" to be her last words if it does turn out that this next bit of surgery is in fact too much for her.

But they are still here. Both my precious girls. Two out of three though really, and I'm sure the hole gets bigger as memories I thought were safe fall into it. And I am so scared that the other two will fall into the hole with Goldie, and I will lose not only them but also memories of them; the way Mog's curves fit my body, or how tLP tells me I am the best mummy in the whole wide world and  can she have a lollipop, or the smaller things currently too unimportant to even think about trying to preserve as memories. And I want to look at them and enjoy them, but I keep seeing the gap they will leave. And no, neither of them is (as far as I can tell) likely to be leaving us very soon.

Too many memories, too, of last days I think I'd prefer to forget. A child being bagged over their ventilator, deep suction on a child who had never needed any kind of suction before. Stupid disposable aprons and gloves getting in the way of comfort and touch; harsh plastic chairs and unforgiving hospital lights and pain. And why can I remember this (even when I'm thinking of something else entirely) and yet forget "achAAAAAAOOOOWWWWW!!!!!!" until I hear its echo after pummeling my mind for something more pleasant?

And how can it possibly be right that I now know more children who have died than adults, despite having a wide extended family and despite having worked in nursing homes? 

I wouldn't change this. Well, yes I would, I'd rather have my girl back I think, and if I can't, then I'd rather have some nice peaceful memories about her last days. But I wouldn't change who she was or who I am, I wouldn't rather not have known her and this army of others, however much it hurts. I'll take this hurt since it comes with such love, I'll take this life above any of the others I might have had. But just now, just this evening - and unexpectedly so; this wasn't the post I set out to write - I'm drowning.

Tia

A farewell to B

Mog and I danced at death today. We weren't expecting to. But we were privileged to attend the funeral of a most precious friend, our beautiful butterfly B, who died so suddenly whilst we were on holiday last week.

Parents are not built to accommodate the death of a child. It's not supposed to happen. When you hold your previous baby, the hopes and dreams you have for them are more likely to include weddings, graduations, first steps and flying kites and endless enchanting chatter. We might imagine we hold in our hands a little mini-me, created to avoid all the mistakes we made ourselves. Or perhaps we're more realistic, and we hold our breath in wonder, wonder at the beauty of this new life; and aim to give them the world, to allow them to seize whatever opportunities may come along.

We don't generally imagine we will outlive them; that one day we will hold them too silent and still, and make unthinkable decisions about the very last services we can offer them.

Some of us have children with disabilities, with complex medical needs, with uncertain lives. And then we do have to think the unthinkable, and for some of us there's an element of comfort in thinking through some of the worst things that might happen; not comfort in thinking bout them, but comfort in knowing or at least thinking we know what decisions we might make about certain things towards the end of life.

And Beautiful Butterfly B did have profound disabilities. But she was healthy, not frail, and her death was not expected, not anticipated. There was no lengthy illness, no gradual decline, none of the warning signs we may have seen in our children or in others, preparing the way for us. She was just here. And then she wasn't.

And in a few short days - although I'm sure they will have seemed unbearably long at times - B's family created a beautiful, beautiful service of thanksgiving. A service which managed to capture the grief and loss, the shock and the pain we all feel. Which poured out the love B had always inspired, into her casket and back out to the congregation. And which was able to celebrate, truly celebrate, the new body B now has, the wholeness and perfection she has in her new room in our Father's house, and the joy that she has her new Dancing Partner, our Lord Jesus Christ.

And so we mourned our loss, and especially her family's loss. But we also celebrated her Homecoming; and as Mog heard this song her happiness and excitement spread in a wide face-splitting smile. And so we danced, Mog and I, in anticipation of that beautiful day to come, when we will all dance together, with the true Lord of the Dance leading us on.

Just for Today

Just for today, I am not OK

Autumn's beauty empty to me;

The sun, aching bright, so cold.

All around me lost and lonely

Leaves fall, no last blaze of glory, 

But tattered, decayed confetti.

Just for today, I am not OK

I crack with the puddled ice.

Knife sharp air cuts at my face.

There is no comfort here. 

Just for today, I am not OK

I will allow myself to feel

The weight of ages crushes and I fall.

I am not OK. 

And tomorrow I shall pick myself back up

put melancholy in its little box.

Put down the memories and find my thankfulness.

Tomorrow. 

More from Mog and Me

We spend quite a bit of time together, Mog and I, usually when she is unwell and the Little Princess is in school. It's nice, except the her being unwell part; tLP is naturally hugely exuberent and generally manages to ensure most of the attention is firmly fixed on her when she is around. Without her, it's Mog's choice of music, or peaceful silence. Or, of course, the suction machine, the siren song of the SATs monitor, the Grump-hiss of the oxygen concentrator and the steam train breaths of a rather poorly child. But still, it is as a rule a more restful environment when tLP is elsewhere.

tLP and I get our own time together when Miss Mog is in respite, and the dynamics are different again; freed from the necessity to compete we get silly giggly spontaneous expeditions or calm uninterrupted cuddles, and occasionally a swim, although these are trickier to sort out now that swimming lessons are back in session and pools are closed to the public after school. We get to go for walks holding hands, sneak out for fish and chips, or just sit and chat. And always, she likes to phone Mog at respite, and check up with the nurse that all is going well.

But this was a different kind of tLP free day; Mog and I went into Oxford to the Magic Cafe. And as I sat and stuffed myself silly with enjoying a tofu chana daal with cauliflower bhajis, Mog's other Mum entertained us all with a lovely selection of songs. Beautiful singing, a fine pianist, and Mog providing backing vocals where appropriate; a lovely way to spend a lunchtime. Even if the people at the table behind us seemed completely oblivious of the fact the music was live, and determined to talk on ever louder to drown it out. 

Didn't put Mog off though, although the change of pianist half way through did disconcert her a little.

And then Mog and her other mother went for another music session of a rather different kind, and I had a whole two hours to myself, to be spent pootling along the Cowley Road. Dipping into Oxfam, I found a book I'd been hearing good things about and thinking I ought to read, a copy of Swallows and Amazons, identical to the one I had loaned out several years ago and never had returned, and slotting beautifully into my newly pruned bookshelves beside the rest of the series, and a new Kipper book for tLP. And then the cashier disappeared with my books, returning after five minutes with an apology, and a discount as one had been wrongly priced. Hurrah!

A bit more of a wander, and the shops began to pall, so I slipped away from the traffic and into one of the more peaceful spots on this planet.

Closely supervised by a very nosy, but very upside down squirrel, I meandered through the churchyard and cemetary

propping myself up on a tree trunk to read a few chapters of my new book

and enjoying the beauty, and the greenness, just a solid brick wall away from the hustle and bustle and fumes of the roadside.

It's an odd place really. Where else would you find four bicycle shops all within a few hundred yards of each other? Twelve different barber shops, cuisine from around the world, little shops selling okra and yams and sharan fruit and rice, university students and staff and young families, two hospices, a couple of convents and some very adult shops and bars, all side by side with this peaceful woodland memorial churchyard and cemetery in the middle?

Old graves and newer graves, beloved husbands and mothers and children. And this:

"Not forgotten", says the inscription at the bottom. And, louder than the words, "Not Forgotten" proclaims the geranium clipping newly placed in a neat little pot. Not wife and mother now, but daghter and sister? Brother and son? Two deaths nearly a century ago, and someone still remembers. I hope they have the comfort of hoping for a reconciliation.

And so I think of Goldie. I don't visit her grave; she is not there; it is not a site which has much meaning for me. And it is, in any case, far more important to her other family, and it would only cause extra grief if we were to meet there unexpectedly. There are other places which are far more Goldie-ful than one small slice of earth. We will meet again one day, and what an amazing meeting that will be. Meanwhile I'll catch her echoes along school corridors and in quiet spots at church, in photographs and with friends and in the sudden wave of recollections which wash up,  released by a phrase or an expression or any one of a hundred unexpected things.

Never Forgotten.

So I paused to photograph the marker, and then paused again when I came to write this as to whether I would include it. It is, after all, someone else's story and not my own to tell. So I hope the flower-giver, the rememberer, will forgive any hurt if I have intruded upon his or her grief. And I hope those friends I have to do visit graves - and how can it possibly be that I have more than one set of friends who nurture a too-small grave? - will also understand that I mean no disrespect by not visiting, and cast no criticisms their way either. We just mourn differently. 

And then, because life's like that, and because time runs on even when it feels as though it has stopped, I walked back to one of the hospices, collected a happy singing Mog, and drove back home, picking up a very contented Little Princess on the way. And there was tea, and there were bedtime routines, and there was much silliness with the cat, and it was a good day.

Tia

Goodbye, Gwen

When I first moved back to Abingdon, leaving work and starting out as a foster carer, I lived in a beautiful but impractical house o the other side of town. A terrace house with three storeys; true there was a lift to the first floor, but only steep stairs from there to the second storey and two of the bedrooms. A narrow concrete yard, with the sort of washing line which needs a wooden prop in the middle to push the washing off the concrete and into whatever sunshine can creep between the high rooves and brick walls. Low brick walls partitioning the yards, and a ricketty wooden gate opening out into the back lane; the space for dumping rubbish, and what would become our main entrance, as the front door and hallway were completely inaccessible for wheelchair users.

Beautiful old red brick, a Christ's Hospital house with 1897 etched into the brickwork. Tall sloping rooves and wonky sash windows, creaky floorboards and horse hair plaster on the walls. Two up, two upper, and two down, and separated from the busiest road in town by a tiny front garden and another little gate.

I had never lived like this before. None of us used the front doors. Polished doorknobs and letter boxes, beautiful little gardens (except for our overgrown wilderness; some things don't change), but the real life happened at the back.

My kitchen at the back of my house had a back door facing next door; this was mirrored so next door's back door faced mine. My sink under my window was opposite next door's sink at their window, and here I came to know Gwen.

Gwen was my lovely neighbour , who welcomed us into our house and into this new phase in my life. Whether washing up at the same time, taking out the rubbish, or hanging out that endlessly damp washing, Gwen was always there, always smiling, and never too busy to lean against the dividing wall and settle down for a chat.

Gwen welcomed all my children; never phased by the somewhat impertinent questions put to her by a child with Asperger's, nor the shrieks and squeals of an overexcited, oversized, toddler.

When Goldie first moved in, and I turned my washing line into an overhead toy line for her, hanging bells and rattles and elasticated bouncy balls, Gwen cheered her on. Gwen's bedroom was next door to Goldie's, and not once did she ever complain about Goldie's all night parties.

Gwen shared my delight in Mog when she came as a baby, and never complained about the long hours of crying. She shared news of her family, filled me in on other neighbours and on our house's previous tenant, and encouraged any efforts I made to tame the wildly overgrown jungle my garden became, without once criticising the state I'd let it get into.

For years, after we moved house, I would see Gwen around town. She was never too busy to stop and catch up, marvel at how the children had grown, tell me something new about her daughter. Always supportive, uncritical, and encouraging.

Last time I met Gwen, we were both having a cup of tea at neighbouring tables in hospital. Catching up with Mog and myself, she shared how she had just had twenty seven injections into her eyes, to treat a painfully debilitating condition. Coupled with her worsening hearing loss, she begged me to excuse her for any times she might have walked past me in town, explaining how little she could see or hear these days.

And today it's Gwen's funeral. I hope she knows how much her encouragement and support meant to me as I settled into life in my own house rather than a hostel or shared place, and as I immersed myself in foster children and adjusted to always being the one on shift. I love our new flat; it is so much more practical for all of us, and we do have lovely neighbours here too. But Gwen was someone very special, and I think the world is a slightly dimmer place for the loss of her light.

Rest in peace, Gwen; you've earned it.
Tia

JP

An Old Soul, passing through life, liked what he saw and decided to stay. Though everyone knew he was just passing through, this for-a-while child put down roots. And his branches grew high, and his shadow fell wide, and his quiet strength touched many lives.

A gentle spirit, deep roots of love held him fast as his branches shook and trembled. The winds of time, for us a breeze, were for this Old Soul a cyclone. And all too soon the branches snapped; the trunk was felled, and the old soul was free once more.

Now harsh light falls on those who had lived in his shade, and it hurts, for he has gone. But his roots are as deep as his branches were high, and they grow in those who love him. And his enemy, Time, cannot reach him now, and his roots will grow deeper and wider.

Goodbye, Jackanory - it's not only your parents who miss you,

Tia

Lasting impressions

Playscheme today for both girls. An empty house - bliss.

Playscheme happens in Mog's school, which was also Goldy's school for a while. For a long time, Goldie's pictures lined the corridors - photographs of her riding her trike in the snow, doing some "traditional Tudor wheelchair dancing", taking in part in Christmas plays, just generally being part of the school. Over time, the coridor displays have gradually changed, swapping the class of '05 for more recent displays.

It's got harder walking down the coridor; I know memories aren't erased as the displays are replaced, but they're photos I don't see at home, different pictures, different glimpses of wild hair and shiny eyes and glee glee glee. Last time I walked the coridor, the last photo had gone, school well and truly moved on. As it should; it would be a little hard on the newer children if their achievements were never marked. But still, a little difficult to be reminded there won't be new memories ever.

And so today I collected the girls from playscheme, coming not down the main corridor but through the pupil entrance. A few minutes early, I paused to look up at the mural, made a few years ago, when Goldie was a pupil. It's not a picture I get a close look at very often; parents don't tend to use that entrance. I hadn't appreciated the trees and grass were made using pupil handprints, although I do remember the whole school being involved at the time. Looking closer, I realised all the handprints were marked with their owners' initials. I also realised there were an awful lot of children whose initials I couldn't translate into names. But, tucked in amongst the DCs and JWs was one set of initials very familiar and totally unique. So her face may have gone from the walls, but I think it's fair to say she will always have a hand in the school. That'll do me.

Tia

Hospice is

A happy place.
A restful place

A place with time and space to have discussions about the big things
Without forgetting to take time to enjoy the little things
Somewhere to turn those mental engines off for a while

And let others share the load.
Hospice is a place to remember

A place to reflect on the changes and troubles and stresses and worries

And a place where those troubles and worries can be faced, and acknowledged, and can therefore be put into their rightful place rather than becoming huge and overwhelming.

Hospice is a place where people aren't afraid to talk about the unthinkable
And where death can be seen as a part of life. Where decisions can be taken about medical treatment, looking at the whole of a child's life rather than its component parts, looking at overall quality of life now and in the future. Having the freedom to explore the fact that certain measures to prolong life may not actually be in the child's best interests, and trying to work out where attempts to sustain life may actually end up merely prolonging the dying.

Whether there are two children sleeping peacefully or eight children playing drums, hospice somehow remains a peaceful place

Where, no matter how busy the staff may be, someone is always available for a chat.

And despite the intensity of the conversations, the seriousness of the problems, the complexities of the child, hospice is a happy place.Tia

Life saver

These things save livesPrevent injury, prevent death. For the sake of a fiver or so.

Tia

Two years on

We buried my Goldie two years ago today.

The collage I made for her funeral is still hanging on its temporary nail in our hallway; I should probably either decide that's really where it needs to be and hang it properly, or else decide what else to do with it and do it. I think it needs to stay really; it holds so many memories.

I can still hear her, you know. Shopping sometimes, I am sure she's squealing in the next aisle and then I remember she can't be. I dreamed the other night we were all running dreadfully late for something (not a rare occurence), and that we'd forgotten to pick her up. Things were getting impossibly tangled, and we were getting further and further away from collecting her. And then I woke up, and realised we weren't late for the appointment at all, and I still had plenty of time to call her carers and arrange things. And then I picked up the telephone and scrolled down to her number, and then I realised I didn't need to make that phone call after all...

Her phone number is still in my telephone. I thought I'd lose it when I switched phones, but somehow it travelled on the SIM card and is still there. How do you delete it? How do you not?

Today the Health and Safety Executive officer who investigated the circumstances surrounding Goldie's death phoned me with a date for the final part of the investigation. It'll be two and a half years since the accident, and the very last official part of her story.

It might be time to take down the order of service from its resting point on the kitchen window sill. Then again...

I wish, I wish Little Fish had had more time to get to know her biggest sister. I wish I had a decent photograph of all three girls together. I wish so many things about her last few months. Do I wish I'd known? An impossible question; if I'd known we would have so little time I'd not have agreed to her moving out; if she hadn't moved out she wouldn't have had the accident and so then she'd still be here.

Doesn't matter what I wish though; she did move out; I pushed hard for her move for so many reasons, and then she died. And then we all sat around and waited, and waited, and eventually we were allowed to have a funeral and then we buried her.

And in the three months between her death and her funeral I sat and hoped that having the funeral might help bring some kind of relief. And it did, sort of, but the pain and loss and separation was of course still there. And then I hoped the inquest might help. And then I hoped the court case might feel like some kind of an ending. And now this last piece of the official process, and I can't imagine that'll change things either.

It isn't all doom and gloom. I can't imagine Goldie being terribly happy amongst doom and gloom. In fact I know she'd have hated that; she didn't like people being upset around her, it frightened her. And I can't imagine her sitting quietly whilst people talked of her in hushed voices; she'd get the giggles and squeak, and shout out lines from her favourite stories.

Echoes in my mind - "That was absoLUTEly perfect, and Baby Beer SQUEAKED...Time to go home, come on, AMEN!"

I hope she's having fun today.
Tia

Worlds apart

There's a line from Buffy which a friend and I use from time to time - "Our lives are different than other people's". Granted; we're usually talking new and intriguing variations on dealing with poo or unforeseen complications from an overabundance of helpful professionals, rather than giant snake demons, multiple apocalypses and the ability to slay without breaking fingernails. But it's still shorthand for the fact that we're living in a world most of the people living in this world have no idea even exists.

Every so often, my world bursts in on someone else's, and their comfortable assumptions about life are blown apart. They realise, for example, that my child was just like theirs until there was an accident at birth; that not all disability is testable for in utero. Or they discover that the national health service does not in fact provide constant in-home nursing care for every child with a disability. Or that some children won't get better, no matter how marvellous medical advances might be. Hopefully we don't just blow a cosy world apart but also help open eyes to the beauty our world contains.

Sometimes though, it's the other way around - and it's my world which gets cracked. A conversation with someone fairly closely involved in Little Fish's daily life. Who, on discussion, proved not to know the difference between a catheter and a gastrostomy tube (for anyone reading who is similarly unaware, the catheter is for urine, it goes up the same tube most of us wee out of and drains the bladder. The gastrostomy is a little silicone tube which joins the stomach to the skin and lets us pour liquids directly into it). It's not simply that this person spends time with LF nearly every day, it's that I had forgotten these things are not part of most people's lives.

And the other night a friend rang here. And my first thought was that they were ringing to let me know another child had died - one of the five children I can think of right now who are critically ill in hospital or just about hanging on at home, although no one really quite knows how. And they weren't, they weren't phoning about anything serious at all. And I realised that probably, it wouldn't be most people's first thought whenever the phone rang.

I'm not sitting here waiting for a child to die. It's just that having children die is a part of this world I live in - and, thankfully, it probably isn't a part of everyone's world. I certainly hope it isn't anyway.



I had a daughter, and my daughter died. And if I harp on about it, well, know that she's nearly always on my mind. Not always in a world-shatteringly awful abyss of loss kind of a way, sometimes in a lighthearted oh, she'd have loved today kind of a way, and sometimes in a half-guilty, we'd never have been able to do that with her kind of a way. And before she died, I didn't understand the enormity of that loss. I've known other children who've died. I've known other, older, much-loved relatives who have died. But the utter jar, the time fracture when a parent loses a child; that, I hadn't known.

Time passes, as it has a tendency to do. Life moves on; it's tied to time that way. But death, death interrupts both life and time. And death causes time to eddy oddly about life - a phrase, a request, a something; and suddenly that deathlossgriefPAIN is back as urgent and demanding and piercing as it was when it happened, and as piercing as it was before it happened but when the realisation of its inevitability first hit.

And that probably doesn't make much sense. But I think I needed to say it. And having said it, I can step aside from it and bring myself back to the land of the living, where the poo from small incontinent children is still being added to by the piles of poo from smaller undertrained kittens; 4 loads of washing today and two bags of cushions and stuffed toys thrown out and one most precious knitted doll waiting for a Biotex bath in the hope she'll recover. Ground pepper under the furniture does indeed stop kittens pooing under the furniture, but, as the saying nearly goes, you can lead a kitten to litter, but you can't make it sh*t. This house stinks.

Tia

Two years on.

Two years ago

One year ago, Friend and I, a pizza eaten in memory of the great Pizza Eater, talking through the events of that week; a quiet celebrate and mourn.

And this year? A field of Guides, friends who knew Goldie, but no real remembrance, no acknowledgement of the day. My fault I'm sure, if blame there is; I don't expect others to keep track of my life. But just for now, I seem to be washed up on a small stony island whilst swift waters of life run past on either side. Camp jokes about burns and coffins and accidents hugely unfunny, but any negative reaction inappropriate too.

A goodIsh day, setting aside the minor issue of this anniversary. No special significance except perhaps to me. Is there an offivially designated mourning period? Am I supposed to be over this by now?

Tia

Two years ago

Two years ago this week my Goldie moved out of our house and into her own, the first young adult to move into what would become a shared Supported Living house. Not a Group Home, but her own home, her own tenancy with her own staff to support her. Better than a Group Home, we were told - and still believe - more freedom, fewer regulations, and better funding leaving more money for holidays and general life enhancers rather than just the basics.

Two years ago this week, Little Fish and Mog and I were spending all day every day giving Goldie's new carers a crash course in Goldie. Goldie herself was wildly excited by all the attention, a little overwhelmed by the huge change in her routine, and totally lacking in understanding about the permenancy of the arrangement.

A brand new house with keen new staff, lots of kinks to work out but masses of enthusiasm to do so.

Somehow, just six weeks later, the unthinkable happened and my beautiful Goldie had her hideous accident. Two years later, I believe we now know as much as we ever will about the how and the what and the where and the when. And the why is something we'll never know. I'd like to tell her story. But still the legal process rumbles on; inquest over half a year ago and now the prospect of a criminal court case later on this year. And still the need to keep events fresh, to preserve my account to produce in court when needed.

I have no interest in this court case. My daughter died. I miss her. I chose to move her into her new home - or at least I chose to move her out of my home. I'm still reasonably sure it was the right decision. But the fact remains, if I had not, if she had stayed with me, she would probably still be alive today. My part in her death doesn't call for Legal proceedings to be taken against me; how can I be involved in prosecuting others who may have paid a part? And whether or not I play a part in this, once this is all over, she's still dead. So what's the point?

Tia

Beating the odds.

We went to a birthday party a few short weeks ago. A milestone birthday, a "the doctors said this child would never reach this age and look at her now" birthday. A party where the birthday girl sat proud in her wheelchair, waving her arms and shaking toys, getting excited about her presents and making sure Mum was paying her her full attention at all times. A party for family and friends, classmates and cousins, a real celebration.

I've watched this little girl since she joined the girls' nursery school, watched her change and grow, watched in amazement as she developed the ability to hold and shake toys, melted at the sight of her beautiful ear to ear grin, smiled as she fussed and fretted when ignored and then grinned and giggled once firmly back at the centre of things.

A little girl, not that dissimilar to Mog last year and the year before, but somehow changing and building her physical abilities, starting out in the same wheelchair Mog had and managing to injure herself in just exactly the same way, wrapping her arms around the bars and trapping her head and being a gorgeous blonde mini-Mog in many ways. But learning to control her arms and hands and loosening up where Mog has stiffened. Making exciting progress; infinitesimal perhaps for those not familiar with our world, but whole feet for those of us used to measuring inchstones not milestones.

This morning that little girl lost her battle with an infection and now that smile will never light up a room again. She made it to her fifth birthday, she had her big party and was the princess for her day. And the future was suddenly looking like a possibility. And now it isn't any more. Please pray for her family.

Tia