Wednesday, 26 December 2012

Christmas 2012 - Navigating through Stormy Waters

This photo sums up Christmas Day for Chrissy. I've had a stinking cold for over two weeks now & dreaded Chrissy getting it as I knew she'd find it hard to cope. She can't blow her nose or deal with all the discomfort.

On Saturday she was complaining 'I feel sick' and by Sunday her nose was streaming. She was also lashing out at us randomly. One minute she was sitting quite happily the next taking a swipe at whoever was closest. At one stage she leaned in towards me. I waited expectantly for a kiss but Ian suddenly pulled her back. 'Her teeth were bared - she was going to bite you,' he said. The level and nature of her aggression is out of character & it's so random. Is it a side-effect of Keppra, the new antiepileptic that was introduced last week, or is it because she feels such discomfort from her cold?

On Christmas Day she was very squawky and unsettled - we were walking on eggshells from the off. We were spending the day with my sister, Sarah, & her family in Bovingdon, Herts, an hour-and-a-half's drive away. Ian drove Chrissy and I kept Alex company in her car as she'd planned to go off afterwards to see friends in the area. Halfway there, I got a call from Ian to say Chrissy had been undoing her seat belt & trying to open the car door on the M25. We hadn't seen those risky behaviours in the car for some time.

It didn't bode well.

My sister and her family did a sterling job entertaining us for Christmas dinner, considering that they too, had been ill with colds. Like us, they had considered cancelling but we all made a valiant effort to eat, drink & be merry - as you do!

We'd last joined them there for Christmas in 2010, when Chrissy had spent most of the day in various states of undress & distress on the kitchen floor. Although, two years on, it wasn't that bad, neither was it quite the rosy vision I'd pictured - of Chrissy mingling happily with her cousins & making us laugh with her quirky sayings & antics.....

Instead, Chrissy alternated between sprawling half-comatose on the sofa, moaning & screeching, swearing like a navvy, farting like a trooper, bellowing Diva-like demands, & randomly slapping Ian in the face. She refused to go to bed &, despite looking like death, still managed to stuff her face.

At the end of the day, I was feeling pretty rough myself & longed for my own bed. We were supposed to be staying at Chrissy's nana's nearby but, as I hadn't been drinking, I decided to dose myself & Chrissy up with Paracetamol & drive home.

Chrissy had other ideas.

She lay down in the far corner of the kitchen & refused to budge for a good hour or so. Ian & I tried shameless bribery with such irresistible treats as 'banana-in-a-bag-tied-with-a-bow' but she wasn't having any of it, & screamed 'go away!' whenever we came near. In the end she got up when she was good and ready. Then, because she's been struggling so much with transitions - another behaviour that's recently returned with a vengeance - we had to woo her with every cunning strategy we could muster into the car. There were huge sighs of relief all round when we finally belted her up.

During the journey home she didn't utter a word other than to ask for tissues during a sneezing fit. When we got home she kicked off as soon as we walked in the door. Cushions and shoes were thrown across the kitchen, then eventually Ian got her up to her bedroom & half into her pyjamas, when she called a halt to proceedings & threw herself onto her bed, biting & twisting her hands. After a while, I managed to calm her down enough to persuade her to use the toilet. She got halfway there then stopped & sneezed violently. 'I need a bath mummy,' she declared as a wet patch sprouted in her pyjamas.

When I finally got her to bed she insisted that her pillows be turned over several times & her blanket just so but as soon as I turned the light out & left the room there was silence. She slept soundly through the night and beyond.

I felt sad for Chrissy that my sister's family weren't seeing her at her best again. I also felt uncomfortable about inflicting all this on other people on such a special day. My sister's elderly in-laws were there too & it didn't seem fair on them. Everyone was kind & couldn't do enough to make us welcome but I so wished things could be different, just for that day. We have such high expectations of Christmas don't we?

On the drive up I'd spoken to Alex about her mixed feelings towards Chrissy - all the 'why us' moments we grapple with at times, the anger that we're unable to express because Chrissy can't help it. I love her unconditionally because I'm her mum - I make choices as to when she comes home and how her behaviours are managed. Her siblings are relatively powerless. The impact a disabled child with challenging behaviour has on a family can be corrosive & divisive. Sometimes in trying to hold my family together and do my best for everyone I've felt like I'm clinging to a sinking ship but I think we're still afloat....just!

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


  1. I let go of my expectations for Christmas this year, and it did help, but it's very hard, especially spending the day with no adult company apart from my eldest daughter. There's no easy solutions are there?

    1. No there aren't unfortunately. I feel strong obligations to wider family & it's one of the few chances they get to see Chrissy. Last year it worked, this year it didn't. Probably would have been best to have stayed at home with Chrissy to nurse our colds, & leave the rest of the family to it!

  2. You have to deal with one thing at a time in my book, some times every thing comes at once and its crazy. Being healthy is key and like your Chrissy you never know what tomorrow will bring. I do think now I appreciate the simple things a lot more now, and happy when things go well.x

    1. Thanks for your comment Janie. Hope you had a great Christmas & New Year x

  3. I have a 30 year old daughter who has a chromosome abnormality and severe learning difficulties. Like your daughter, she can't blow her nose when she has a cold and is frustrated at not being able to communicate with people as she has no language.On reading your quotes above, I felt like I was reading about my life; the feelings, the frustrations; the "why me"? etc. I am raising my daughter single-handedly and she is an only child. my daughter also suffers from epilepsy but her medication is working as she's not had a seizure for about 7 years now! I gave on some of "life's routines" a long time ago. it's frustrating of course, but I have no choice. Best of luck with Chrissy...with love & hope.

    1. Hi Marie-Andrée, Thanks for dropping by and telling me about your daughter. I admire anyone who raises their disabled child in adulthood, especially single-handedly. Ian & I were discussing today how draining Chrissy was on her visit home this weekend, & how one carer would struggle to cope, which could put her at risk of abuse. She was very cheerful but demanded attention constantly. No one stay is ever the same. Her ever-changing needs will present real challenges to her care provider when she leaves the assessment & treatment unit. How do you do it!? xx