Friday 29 March 2013


Happy Birthday, Little Princess!

I love the way you work so hard at your reading.

I love the stories you write down in your best handwriting.

I love your honesty and the way you don't hesitate to share your opinion, but also how you freely apologise when you see any errors you might have made.

I love how much you love your friends, and your ability to make friends with children and adults of all ages.

I love your determination and independence.

I love how you are able to try out new things, yet still enjoy some of the presents you had for your second birthday, the first birthday you shared with us.

I love how you find ways to include your sister in everything, just as your school friends dance around finding ways to include you in every way.

I love your arms around my neck, your body snuggled close to mine, your breath whispering loving nothings into my ears day after day after day.

I love you, my beautiful fairy princess birthday girl!

Sunday 24 March 2013

"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.


Reason number 6359 why my house is a mess

Thursday 21 March 2013


We have two empty oxygen cylinders. It happens from time to time; I can predict when, because I can't predict when Mog will need to use them.

Anyway, we had one empty one, but, well, we have the concentrator, one big one and four full small ones, so swapping it wasn't top priority. And then we had two, and it seemed to be worth making the phone call and arranging to be in all day.

I phoned on Friday, and delivery was arranged for Monday. A little bit of confusion; they thought we only had one cylinder, I explained we have five, and end of call.

On Saturday the oxygen man turned up. With one cylinder. Can't swap two - policy. Frustrating but fine; we swap one cylinder and I plan to phone again on Monday.

On Monday a different tech phones as he needs to do an audit. He turns up, replaces the other cylinder, counts all the bottles, and inspects the concentrator.

The concentrator works fine, but fails the test, as it does not have a shiny sticker on the front with the supply company logo on. It must be exchanged.

I ask whether we can simply put a sticker on the concentrator, but apparently that is against policy. These concentrators are not kept in stock; one will be ordered and then an appointment made to swap them over.

On Wednesday the tech rings back; he will bring the shiny new concentrator "about 1ish".

At 3pm the oxygen van pulls up outside, and shiny new concentrator is brought inside. It needs charging but checks out fine otherwise. Usually we charge it for a couple of hours, it can then run off battery for a good few hours, or slowly and silently discharge itself until we charge it up again. Charging is not silent.

The tech leaves, we carry on with life as usual, ignoring the irritating whine from the charger. Finally it reaches 100% and I unplug it.

As I get the girls to bed, I am plagued by an intermittent beep. Smoke alarms all fully functional, ventilators and monitors all charged; I track it down to the concentrator. Every 43 seconds, pip. Silence, 43 seconds, pip. Repeat until I plug it back in. Whine.

Fair enough, perhaps, despite reading 100% it actually needs a full day on charge?

I leave it alone overnight and check again in the morning. Pip. 43 seconds, pip. Etc. I turn it on; it runs fine when plugged in but immediately switches itself off when unplugged. Not actually that transportable then.

So I phone the oxygen company, and explain that they have removed a fully functional bit of kit, replacing it with one which does not work. The person at the other end of the phone appears to be having difficulty with this concept, but eventually concedes that we do, in fact, require a concentrator which works properly. She goes away to consult the tech chappie.

Tech chap rings again, and makes arrangements to return with fully functional concentrator later today.

He returns with our old concentrator, still minus the magic sticker. I dig out the manual, I demonstrate the issue. He plugs in the previously fully functional concentrator. Which immediately displays an error message and refuses to charge.

I may have muttered rude things at this point.

Two concentrators dismantled, batteries checked, new charger exchanged for old, known to be functional charger. Old concentrator decides to start charging.

I suggest removing sticker from new concentrator and pasting it onto front of old one. Can't do that - policy.

It is the battery in the new one which is not working. I suggest swapping batteries. Can't do that - policy.

So, after four phone calls and four visits, we do have a full set of cylinders, and a fully functional but against policy concentrator. Oxygen tech will now have to order new transportable concentrator, and will phone when it is in, to arrange delivery.

I explain that Mog - and therefore her concentrator - will be in respite for a couple of days next week. That's ok - he will phone first to check we are home. But - and if the rest hasn't had you wandering cross-eyed in circles yet, then you haven't been walking in our world long enough - if Mog is not here, he will have to visit anyway, in order to drop a card through our door. Because if a visit has been scheduled, then a missed visit must be "carded", whether or not the tech knows it is an unsuitable visit time. Policy.


Sunday 10 March 2013

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.

Tuesday 5 March 2013

Love is

A small girl, pampering her mother at Brownies. A back and neck massage, a hand rub, nail painting, hair brushing, and foot weirdery.

Love is sitting still as a small child paints my nails, and leaving the varnish on overnight, even though I feel as though my fingers are suffocating under it.

Love is playing bingo together, winning, and letting the small one eat the creme egg prize without assistance.

Love is spending time together, valuing the thought and care, and appreciating the closeness.

And it can only possibly be love which kept me sitting as my head was scraped and poked by a very very strange metal head massaging wire brush/egg whisk thingy.

But it requires no effort at all to enjoy holding hands and snuggling and being told I'm the best mummy in the whole wide world and that I should alax more often.

So the question is, how long does love dictate I should allow my fingers to remain in a state of suffocation?


Sunday 3 March 2013


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.


Friday 1 March 2013

Friday blends.

No-blend breakfast.
250mls milk
150mls fruit smoothie (innocent acai berry)
30g four grain baby porridge.

This is our lazy breakfast, our holiday breakfast, our "oops it's early let's not wake the neighbours" breakfast. Very easy and straightforwards. I was worried about low protein but after looking at the week's food, I think I can stop worrying. We may use this even more often than we already do, or pre-mill some of the readybrek and weetabix but stick to the silent mornings.

Tea (and lunch tomorrow).
1 tin sardines in oil, with the oil.
1 big tin sweet corn.
1 large slice Chinese cabbage.
1 large slice nice bread (sourdough?).
Extra water to blend.

Thick, tasty, full of goodness. No clementine because I forgot to add it.



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