Friday, 27 January 2012

Angels, Demons & Selfish Tears

Chrissy with her lovely Nana

As I left Chrissy at the hospital today, her image is etched on my brain. She's screaming, nose bloodied, stark naked, on the floor of the nurses' office where she'd flung herself. Around her, nursing staff & I matter-of-factly deal with the handover. Another patient wanders by and asks me if my hair is naturally blonde. She doesn't bat an eyelid at the ruckus.

I really need the catharsis of my blog at times like this.

If last week Chrissy was an angel, this week she was a demon! The signs weren't good when she came home yesterday afternoon. The bridge of her nose is branded by an open wound. She's been attacking this area by rubbing it violently in outbursts then picking the scab for some weeks now. It had all but healed last week. Now it looks angrier than ever.

My mum was staying with me while Ian was away on business. I so hoped that she'd see Chrissy as lovely as she'd been for me last week. It wasn't to be. Chrissy's obsessions over food inevitably spilled over into a violent meltdown & off came the clothes. I don't know if it's a sensory thing or rage or what - but stripping has been occurring with many of her take-to-the-floor outbursts for years now. The impact on her life is massive, as you can imagine. Stripping effectively imprisons her as it's so socially unacceptable. You can wrestle with her to try to stop her from tearing her clothes off but it simply fuels her frenzy.

We did have some sweet times too. Chrissy pointed to the word 'mousse' on the of lid of her chocolate mousse, and said 'mouse.' Mum and I laughed and corrected her - 'look, it's got two wiggly S's' I showed her. She pointed at the lid again with a triumphant 'Chocolate mouse!' After dinner Chrissy settled down for a cuddle but her mood remained unsettled.

This morning she kept shouting in my face: 'I wanna banana in my bag!' (I kept showing it to her and letting her feel it so she knew it was there but she continued to bellow at me. I lost it, & shouted back 'shut the f up!' In an instant, I was racked with guilt. I'm so not a patient person but I try my utmost to stay calm with Chrissy as I know she can't help it. She signed & asked sweetly: 'Are you cross mummy?'

The old emotional roller-coaster kicked in again, and tears threatened, but it's hard to feel any emotion for long while Chrissy's around as she keeps me on my toes constantly. I was too busy dealing with the practicalities of getting her to focus on taking her tablets & eating her breakfast, while praying she'd stay calm enough to get into my car for the half-hour drive back to hospital.

As we were about to leave a delivery man turned up at my door and, seeing Chrissy's nose, asked her: 'How did you do that?'

'She did it to herself,' I interjected. 'She's got learning disabilities & she self-injures.' He dumped the parcel & off he went. I wonder what he thought as he drove away? What else could I have said? 'Mind your own business?'

As soon as Chrissy arrived back at the hospital she starting demanding food, just as she had when she'd arrived home. When she's in an obsessional, instant gratification mood you've just got to ride out the storm. The clothes came off and the screaming started again. I could hear her as I climbed back into my car, & felt guilty again - for sighing with relief that someone else was now dealing with it.

On the drive home, I allowed myself the luxury of a few tears. I could see no positives in what's happened to us. It was every mother's worst nightmare. A voice inside my head wailed: 'What happened to my beautiful baby?' Thank God those disturbing feelings soon evaporated. I just needed to throw myself a little pity party.

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  1. I know there is nothing I can say - I wish I could give you a real hug but I'm sending you a cyber hug. You definitely deserve a little time for tears.

  2. Bless you - thanks Jane! Cyber hugs are good. Still make me feel warm & fuzzy :-)

  3. I do the same on my blog sometimes and why not? The mixed up feelings you had when you took Chrissy back to the hospital sound desperate, vent away, hope it helped x

  4. Hi Looking for Blue Sky. I remember you venting on your blog & my heart went out to you. I feel a big responsibility to be as positive as possible for mums of younger children who may be reading this to get an idea of what the future holds for their children. I've said before though that all our journeys are different & we still get plenty of 'up' times (Christmas for example). Today my blog was an outlet for the grief & pain I was feeling earlier, &, yes thanks it did help xx

  5. I don't know what to say Jane, other than to offer hugs as Jane has done. I was really moved by your description of events. It is utterly heartbreaking, I imagine, to see your child in such pain and distress and be able to do nothing about it. I read in an earlier post (about PCP), the hundreds of little things you do each day to avoid the meltdowns, watching for triggers, the things you do instinctively. And still, they can't be entirely prevented. I hope that the cry in the car and the venting here helped. I hope the next visit home is more successful. XXXX

  6. Thank you LittleMamma. Chrissy's visits either leave me in despair or on cloud 9. Our moods are so affected by how well/happy our children are aren't they? After 27 years you'd think I'd be able to come to terms with these meltdowns but I've never been able to. I hope that one day someone will get interested enough to research into these, as more & more families affected by 1q21.1 deletions are reporting them. Extreme rages/meltdowns/self-injury has been described in some other rare chromosome disorders, such as Smith-Magenis Syndrome. They must be genetically driven in some way. xxx

  7. Oh my goodness, poor you! And poor tormented Chrissy... I think you've had enough hugs so I am going to give you a cyber gold medal, a cyber million pounds, a cyber crate of your favourite booze and a cyber holiday to the Canary Islands. xx

  8. Bless you Michelle! Right back at you :-)
    That post was the week before last. Last weekend was better. Her nose was healing up & she was going from strength to strength with her ‘awakening’ from Topiramate. She kept noticing things as if for the first time, like a big quirky witch I've had hanging up in the kitchen for ages. She also said: ‘I love you mummy’ when we were having a cuddle on Saturday morning, which she’s said before but more in a parrot-like way. My husband heard her too & we both think this was heartfelt due to the context & way it was said. Her vocabulary in general is widening by the day, her sense of humour’s come back & she’s much more engaged with what’s going on. Her nose is healing up too. Hope she allows it to heal completely this time. These outbursts are very cyclic at the moment, never know which Chrissy we'll get home xxx