Monday, 29 August 2016

Summer of fun.

Amana is not built to be an only child. And there's no doubt she loved Imi hugely. But, there's equally no doubt that having Imi placed big limitations on what we could do as a family. We'd bother rather still have those limitations. But, in their absence, I was determined to make this summer a pretty special one for A. 

 Or at least, I was determined to try. 

It started well. A weekend surfing, at Caswell Bay. Beautiful sunshine, warm wetsuits, good friends, and only the knowledge that friends were missing out due to unfortunately times broken legs to spoil it. Well, that and the pain involved in removing a skin tight wetsuit from a body aching from having been battered by the ocean for five hours when that body is already pretty battered from multiple surgeiries and dodgy nerves. But she's definitely tell you it was worth it. 

A weekend in a hotel, just the two of us in the room. That's a first. Just getting down onto the beach into the soft sand, without wheelchair wheels getting dragged down, that's a first too. Something I used to manage with Goldie and Imi, and just wore out my own enthusiasm for by the time A came along.

Small, simple things, so easy. We arrived at the hotel, friends were just off out for an icecream, so we threw our suitcase in the hotel room and went off to join them. Wouldn't have been possible with Imi - shelve needed to rest after the journey. 

Two very late evening meals. Again, an impossibility for Imi. But such simple fun for Amana. 

Home for a few days, and then New Wine. 

A very very Imi place, especially last year. And harder thank I'd anticipated for Amana without her sister to anchor her. Without knowing that I would be with Imi, she couldn't trust that I would be there for her. Much rage. Many tears. Much shouting. Some fun. Beloved friends. Fabulous carers. Silly moments. 

And so much sadness. Our tent, so empty. Too empty; we will not sleep in it again. And God, always. A thin place, New Wine; the veil between Heaven and Earth so faint, glimpses shine through. Bittersweet, with half our family now on the other side. Strength within the sorrow. Beauty within the brokenness. Promise and hope. And a struggling eleven year old. 

A safe few days at home. Much colouring. A big day out with cousins - of which she managed half, before needing to come home and decompress. And then Special Kids. Us. Our friends. Their friends. New friends. Old friends. A field full of alpacas, pigs, goats, and 200 odd people; families with children with all kinds of additional needs. 

A safe space. Where no one bats an eye lid when the teenager has the third meltdown of the morning, when the only stares at wheelchairs are people wondering why yours is better than theirs, and possibly the only place in the world where the manual wheelchair (carer pushed) race has to be run in heats because there are too many entrants. And where no body minds if the wobbly walkers set off in the wrong direction, and so where this is an entirely acceptable way to finish the race. 

It's a place where Amana is utterly free to be herself. To join in with others, to go off with friends she's grown up with, where she can take charge of some little ones or hang out with the older ones. Or, this year, where she can rant and scream and rage and fury and refuse to allow herself to enjoy things. Imi was missed here too. And her panic at feeling that loss turned into a determination that I must not ever touch Imi's friends. 

There were happy moments too. 
A very gentle bouncy castle bounce. Another first. But finally (I hope) big enough that a little bounce wouldn't be big enough to knock anything major. 

Coming second in the power chair race. 

Fun with firemen. 
A quiet paddle around a beautiful lake. 
(And then raging fury because it wasn't lunch time yet). 

And then home. Safety. Silence. iPad and colouring and undemanding activities, no need to put up a front, just space to be quiet. 

And church holiday club. Always a hit. Except this year, when A's temperature rose as it started, and stayed high enough to have her admitted to hospital before the end. So her very last holiday club fizzled out instead of finishing with a bang. And instead of a barbecue and a party, she had cannulae and antibiotics and fluids and late nights watching her heart rate come back to normal and an admission that maybe she'd been feeling a little poorly, but she didn't want to miss out. 

Home again, and the major op she should have had this week cancelled now due to infection. So I had a look around at various late break type places, and found some super cheap deals. Would she like to go to France, to Disneyland Paris, to Belgium, to a chocolate factory, to a hotel somewhere by the sea, to somewhere in this country to eat chips and share a bed, to somewhere near friends? Nope. She wants to stay home and colour. And bake. She doesn't want day trips, she doesn't particularly want visitors, she definitely doesn't want to go out tomorrow morning (hard lines; it's booked and I need to talk to another adult at least once a week), she just wants to colour, to draw, and to sit with the iPad. And make plans for when we aren't a twosome any more. 

I get it. It's hard. It's been a fun summer. We've done a lot of things we always do, and a good few things we'd never been able to do before, and maybe won't ever do again. 

Seeing Imi's friends without Imi has been unbearably difficult. A boy only, where there should be a boy and a girl. A boy and a girl holding hands, where there should be a third in the middle. 
These two, without their teammate. So hard to watch. But above them, I. The last day of Special Kids, this: 

And things will be ok. And things have been ok. It's hard to argue with a smiling rainbow. 


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