Helen House

We're here. This is respite. Someone else handling all the medications, all the medical needs, all the tedious bits. Leaving me to be Mummy.

We're here. Someone else is in charge of keeping the girls health, happy and occupied, meaning I can be with my friend, who is also here, sadly not for respite.

We're here. And possibly only here will I ever sit knitting and watch two girls, not related, bouncing on giant therapy balls and inflatable horses. Bounce, bounce, bounce, pause. "I'm really sad because my brother died." Bounce, bounce, bounce. "Yes, I'm really sad because my brother died too." Bounce, bounce, bounce. Grin, grin. "Come on, you be tigger and I'll be a fairy princess."

We're here. And possibly only here can two children share a grief, yet be children too. Weep, and then shrug it off and get on with the important business of being a child, and get on with the important busy-ness of being a child at Helen House. To grieve, and to play, and to be able to share that with someone else in the same position. To stay in pyjamas, but to get to McDonald's with a grandparent; to watch a film and to just drop in on a dearly beloved and precious brother. To share final moments and utter sadness, and then to have a rousing game of bubble monkey princess.

We're here. And only here, only at this time, can we drink wine together as adults, and we weep for the loss of another beautiful child, whilst celebrating life, treasuring memories, and being hideously inappropriate (but funny).

You cannot know this joy without knowing this pain. And it is my birthday, and yesterday my friends buried their daughter, and today we're here and my friend's son is in the Little Room. And the staff are worried, because we are here for respite, and I don't think they can ever understand. And they would spare this pain

But it is right that we are here. And God is here. And it is hard, so hard, to watch my friends in such loss. But it is so very right to be here at this time.

We're here. And this is Helen House. Our friends are here. And strangers here too. Respite families, end of life families, first visits and last visits. Love and pain and laughter.

We're here. And I wouldn't be anywhere else.
Tia

Essay on cats.

TLP spent the whole afternoon writing this. Much sharpening of pencils, checking of spellings, and questing for more to write.

Each new sentence admired and praised, all praise received with smiles and hugs and sparkly eyes.

And then, as I come back into the room to suggest taking it to school to show her teacher, because it is quite possibly her Best Ever bit of home writing, I found she'd ripped it up and thinks its rubbish.

I don't. But apparently telling her that makes me all wrong.

Tia

For T and J today

Funeral Blues



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

Kindliness.

Too much going on here really. The girls are fine, I am fine, but lots of my friends are going through unimaginably difficult times right now. I'm sure they'd all appreciate your prayers.

I'd had today mentally reserved for a nice enthusiastic post about the mad hatter's tea party we'd been invited to, about how it felt driving our beastwagon into proper London (Park Lane and everything; real Scrabble London), about the kindness of all the people who had organised it, and how thankful we were to Helen House for inviting us.

You know the drill, some nice comments, a few pictures, the girls in posh frocks, oh - and jelly and ice cream apparently.

We didn't go.

Too much ice on the road, snow falling - not much but a cold, cold day. And a Mog with a cold. Not the best combination really.

So we stayed home instead, baked a mammoth Macaroni Cheese with eggs and spinach. Because I am that evil. And played games, including the Shopping List game (like bingo but with 8 items of food). And Mog surprised us all by managing to join in, memorising her lists, and shouting or sticking her tongue out when her pieces were pulled out of the box. After I'd shouted at tLP enough times to make her use words to read the picture, so Mog could hear it. But still, fun all round, and we each won once.

Not tLP makes friends with everyone. She knows everyone who lives locally; she spends a lot of time in the summer hanging around outside the front of our house chatting to passersby, and everyone takes an interest in how she's doing. She has the knack of assuming everyone wants to know all about her, and people seem to appreciate it.

Today, one of tLP's "friends" (a man with a teenage son and a newish baby and who thinks tLP is completely marvellous. We don't know his name or where he lives) turned up with a shovel and a bucket of grit. They'd walked to the nearest on street grit bin, filled up, and had decided to stop on the way back and grit our ramp, because they were worried about how we'd get in and out of the house. Not only did they spread the grit, but they hacked and chopped away at the caked on ice, getting right back to concrete before moving on.

And now I'm slightly embarrassed for the many elderly neighbours who have ungritted pathways, but it was such a simple act of kindness, and I'm so thankful. People are nice, on the whole.

Tia

Snow day

Friends.

A truly sociable weekend, one set of friends departing just as another set arrived, and a third set spending the night and binding the whole thing together.

The eternal joy of the doll's house, captivating children from two to twelve, (and providing a nicely out of sight dumping ground for countless tiny toys).

The pleasing discovery that the current placement of furniture in our sitting room gives us space for up to six children (including five wheelchair users) plus adults, all able to sit down at the same time, and some of them even at a table.

The satisfaction of being able to offer every visitor, including those with tummy tubes, something to eat, drink or squidge.

The delight in watching a two year old having made startling progress since our last meet.

The definite pleasure of being able to reach all the way into tLP's bedroom, having loaned out the spare powerchair.

The simple goodness of adult company when children are sleeping, helped out with extremely delicious curry.

The peace of mind which comes from wipeable floors and a working washing machine.

All good. And all tiring; excuse my lack of blogging.
Tia

Baked potato soup. For Alison.

I went to find the recipe I used, and realised how much I'd deviated from it. But it was good, very good, and so I'm writing it down before I forget it.

Melt one tablespoon of butter in a large pot. Dice a large white onion and fry gently until soft.

Meanwhile, take one head of garlic and slice the top off, leaving most of the garlic intact. Mince the clove tips you've just sliced off, and add to the onions after five minutes. Fry for another minute whilst boiling kettle.

Pour in about 1.5l stock (boiling water and bouillon cube if you're me), toss in the head of garlic (whole), and simmer until the garlic is soft.

Add the inside of one courgette, having used the skin to make ribbons for a veggie pizza which you will later forget to offer to your guests. Oops.

As the stock simmers, peel the potatoes (around 2lbs) quite thickly, saving the skins. Dice the insides.

When the garlic is soft, remove from stock, squish, discard skin and roots and put the pulp back in. Add the diced potatoes and simmer until potatoes are soft.

Turn oven to 220c. Put potato skins in baking dish, toss with oil, salt and fresh chopped rosemary to taste. Roast until crispy.

Mash or purée the potato soup, taking care not to over blitz if using a blender to avoid turning soup into glue.

Turn off, worry that stock was too salty. Leave to consolidate flavour for two hours whilst drinking coffee with friends. This step may be omitted.

Bring soup back to heat and stir in sour cream (a couple of heaped tablespoons maybe?).

Serve in bowls, adding potato skins in place of croutons.

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

Home again.

Staying with friends, visiting more friends, and meeting up with even more friends on the way home. How can it be that we see our friends who live in Argentina more often than our friends who live a mere three hours away?

I will do better.

Now there's a bus to unload, a freezer to defrost, a house to dechristmas, cats to collect and fish to acquire and and and and. But I think it can all wait. Except possibly finding the phone charger.

A good week, a pleasantly busy but relaxed week, and the chance to be properly helpful to friends who are usually too far away.

Tia