Saturday, 23 June 2012

Sunshine Days

Gather Ye Rosebuds While Ye May by John William Waterhouse

Mum pointed out the poignancy of these words, etched in stained glass on the front door of my childhood home in the Lake District when we went back for a visit in 2008. (Pictured in front of the door are me, my husband Ian and Chrissy's younger sister Alex).

The carefree days we'd spent there from 1968-1970 before moving back down south for dad's job, had been some of the happiest of our lives. Then, we'd been blissfuly unaware of the double whammy that lay ahead - dad's early onset Alzheimer's and the problems with his first grandchild.

Being Chrissy's mum and, of course getting older, has highlighted for me the value of seizing the moment and treasuring the good times.

Yesterday was one of those times. Chrissy was having a sunshine day, and lit up the house with her smiles, laughter and funny comments. I banished fleeting thoughts of 'I wish you'd been like this last Friday at the zoo.' With Chrissy, you have to go with the flow.

My book is threaded with references to such sunshine days - Chrissy's doctor noting her 'delightful social manner,' a trip to the circus where her whole body vibrates with joy, her uninhibited exuberance as she conducts a small orchestra at a village fete, her face wreathed in smiles at a school meeting as she shows me her record of achievement book.

Her wonderful times are as unpredictable as her awful ones - but yesterday, whatever it is that robs her of her equilibrium stayed well away. She was so joyful that she even sang to herself as she pottered around the house and, as she watched her new Snowman DVD, which I'd bought to replace one she'd broken, she enthused: 'I love Snowman!' After dinner she made us laugh by asking: 'Mummy can I have something else to eat?' and immediately admonishing herself: 'No, Chrissy, you've already had your tea.' Beaming smiles and social chit-chat replaced last week's moans, groans and outbursts. With encouragement, she was confident enough to carry out several self-help tasks independently, like taking her shoes off and changing into her slippers, and going to her bedroom by herself to choose DVDs to bring down. Normally, she demands: 'you help me!'

I've learned over the years that it doesn't matter where you are or what you're doing when Chrissy has a sunshine day - you simply bask in the warmth of its glow & enjoy it while it lasts.....

I am a SWAN UK (Syndromes without a Name) blogger

Saturday, 16 June 2012

When nothing you do is ever enough

Chrissy at Marwell Zoo 2005

I've come down with a bad case of 'Why Mes?' Out of all the hundreds of disabled children at Marwell Zoo's Dream Night why does it have to be my child that throws herself down on the ground screaming?

These photos were taken at Marwell Zoo seven years ago. We'd had tricky moments with Chrissy taking to the ground then but she didn't kick off. Not like yesterday anyway....

When Unique kindly offered us tickets, I had pretty visions of meeting other families, maybe chatting over coffee and getting some nice photos of our children together. When WILL I learn?

Chrissy had been switching rapidly between Jeckyll/Hyde all afternoon. Such a rapid on/off on/off mood cycling that I thought again that her psychiatrists must be missing a trick - it had to be an underlying mental health problem. One minute she was screaming 'go away mummy!' and pulling her hair, the next smiling sweetly and saying 'hello mummy. Are we going out in the car?' She kept moaning intermittently too as if a pain or 'something' was coming over her then passing by again. She was also obsessing about food - a constant theme these days.

I was alone with Chrissy for about four hours until Ian came in from work and I felt like I was going nuts myself, just trying to keep up with her moods. How do you care for someone whose personality changes rapidly in front of your eyes? You're on ever-shifting sands.

Once again I fell for the myth that Chrissy would be fine this case, if we gave her everything she needed and took her out somewhere she'd enjoy.

She coped well with the traffic queues into the zoo and walk through the crowds to the penguins. We introduced her to another family whose six-year old whirlwind of a daughter has the same chromosome disorder as Chrissy. Then Chrissy kept asking to sit down. We went back to the entrance and asked for a wheelchair that we'd reserved beforehand just in case. While we were waiting for it the moaning and irritation escalated, and she flung herself onto the ground where she stayed screaming, roaring and biting her hands for about five minutes. She was oblivious to the wet and mud, and crowds streaming through. Ian and I waited it out quietly as we always do. Once, she stopped, smiled sweetly up at us, and said 'it's not raining now is it?' Seizing the moment, I chirped: 'Look, Chrissy's got a black and purple wheelchair. Lucky lady!' 'Nooooo!!' she shrieked, kicking off again. I had to turn away and count to ten but Ian was as patient as a saint (he isn't always but he's more patient than me!) Chrissy's mood switches continued until, eventually, actions spoke louder than words. She got up and happily climbed into the wheelchair. She beamed as we piled her pink lunch-box, Snowman pop-up book and bottle of diet coke onto her lap - and for a while the world seemed a better place.

Ian gamely manoeuvred the chair holding 12 stone+ of Chrissy up hill and down dale (her weight's probably doubled since these photos were taken) but she showed no interest in the animals. She was moaning and groaning again and I wondered if the wind was annoying her. It was gusty enough to blow her hair into her face, which she hates. We put her hood up and tried to jolly her along but she kept letting out shrieks and, inevitably, threw the contents of her lunchbox onto the grass. Greedy crows swooped down to eat her leftovers and, nearby, excited children had their photos taken with someone dressed as a tiger, Chrissy jumped out of her wheelchair like Andy in little Brtain and threw herself down on the ground again. As I waited, I felt irrationally and selfishly furious with her for ruining things when we'd done all we could to make it special for her. 'For God's sake snap out of it!' I exploded. 'Get up NOW!!' She ignored me of course. Sometimes when I bellow at her she looks startled but it's like she makes no connection between her behaviour & my anger, & it leaves me feeling guilt-ridden - so all-in-all losing my temper is a pointless waste of energy. We had no choice but to abort the visit then. On the drive home, Chrissy sat quietly and serenely while I continued to brood bitterly over my lot. This time I told myself to snap out of it. You can't hold on to negative feelings around Chrissy. Her face will light up with a smile, or she'll say something funny or make another impossible demand. She acts like an 'ungrateful brat.' It's not Chrissy's fault that nothing we do for her is ever enough but sometimes it bloody well feels like it is.

Back at home, Chrissy was still unsettled and didn't want to be cuddled. There was a lovely calm time where she sat engrossed in her Snowman 'flap' book but the moaning and groaning continued all night, and she wet the bed - rare for her these days. I think a seizure may be brewing. Or something. Your guess is as good as mine.

I am a SWAN UK (Syndromes without a Name) blogger

Tuesday, 5 June 2012

The Diamond Jubilee & Social Isolation

Missing from our Jubilee celebrations

It's a shame Chrissy couldn't join in with the fun. After another sleepathon (21 hours, followed by three awake then back to bed for another 10 hours) I hoped she would wake up as jolly & refreshed as she’d been two weeks ago on our trip to Exbury Gardens. Instead, Chrissy's mood on Sunday was fractious and shouty. She came downstairs after her morning bath and obsessively switched lights on and off, and carried out her rituals of rearranging objects in the kitchen. The signs weren’t good but I hoped that she might settle down after breakfast if we could get her to sit down long enough to eat it. I made her a picnic to take up to the field where our village was holding Jubilee family events. It’s only a stone’s throw from our house but Chrissy had made up her mind that she wasn’t walking anywhere! I let her sit in my car for a while, as it sometimes calms her, but she kept getting in and out, and became increasingly agitated and screamy. I reluctantly conceded defeat, and Ian took her back to the assessment & treatment unit while our house-guests and I got ready for the afternoon’s Diamond Jubilee events.

It was all great fun. Mum, my two friends, Ian & I lunched on a hog roast and chatted to other villagers as local children took part in games. If I’d brought a fold-up chair & Chrissy’s picnic lunch, she may, just MAY, have enjoyed herself without any big dramas but I quickly spotted potential pitfalls. They include a small paddling pool full of soapy water, lots of dogs and small children to fixate on and terrorise, crowds, queues for drinks and food, the threat of rain……We all agreed that it was a good idea not to bring Chrissy. She hadn’t been in the ‘right’ mood and it probably would have ended in disaster (worst case scenario = throwing herself down on the grass, stripping naked, and screaming and self-injuring.)

We got back home in time to watch the Thames river pageant then in the evening we dressed up for the party – my friends and I wore fifties-style dresses with nipped in waists and big skirts, and danced the night away in a marquee to a brilliant live swing band. As we oohed and aahed over the finale – a magnificent firework display – I thought how much Chrissy would love this part, but not the rain!

I had a marvellous time and got swept up in the mood of the occasion but as always during special celebrations, I had moments of wistfulness. The Queen’s Diamond Jubilee is a time for communities to come together, but it also highlighted Chrissy's social isolation.

I am a SWAN UK (Syndromes without a Name) blogger