A different kind of Christmas

Lil Z and Christmas just don’t mix. This year was her third Christmas, and all of them have been characterised by an unhappy Lil Z. Her first Christmas was spent in Tasmania (QB and I had attempted to escape the Brisbane heat) and she spent the entire day crying – what I know now was probably a post seizure response. The only respite we had from her crying that day was when we put her in the car and went for a drive. She fell asleep and we ended up at the one fish and chips shop that was open on Christmas Day – eating our chips in the car…

Last year, we decided to embrace the Brisbane heat with a Christmas barbecue at home. Lil Z had a fussy morning, alternately crying and sleeping on me. Shortly before Christmas lunch she had a big seizure and didn’t immediately respond to her rescue meds, so we called an ambulance. She came out of the seizure and her SATS were good, so we decided not to take her to the hospital, but kept a close eye on her for the rest of the day.

This year, I was hoping things would be different. After all, she is a different girl these days, much happier and more settled. In the days before Christmas she has only had a few brief seizures and has been enjoying spending some lazy days at home with her sister.

But I think I put too much weight on the fact she is a different girl. Things have improved considerably, but she’s still Lil Z. And she’s still only 2 1/2 years old. Even Vegemite wasn’t excited about Christmas at that age. But it is hard not to hope that your child will be excited about Christmas…

We kind of got off on the wrong foot on Christmas Eve. It was hot and I’d decided to do a fancy dessert for Christmas lunch, which I was still making late that night. And there were presents to wrap. And Lil Z’s meds and feed to do. And then at 11pm, Vegemite appeared, catching us off guard. She never wakes up at night. And although QB and I had eaten the cookies she’d left for Santa and written Santa’s reply to her note, we hadn’t put any gifts under the tree. So, Vegemite immediately demanded to know why Santa hadn’t left her any presents. QB quickly concocted a story of how he’d left quickly because she’d woken up, and would return later with her presents. Vegemite looked sceptical, but accepted that as an answer. QB then took her downstairs to go back to bed.

What he didn’t tell me was that she had ended up in our bed – and still wasn’t asleep (although g. So, in the midst of hauling all the gifts out of the back of our closet, Vegemite sat straight up in our bed and demanded “what are you doing Mummy? Who are those for?” More fast talking (just the presents from Grandma, Grandpa and Granny) and I took her back to HER bed.

I finally staggered to bed – dessert finished, presents wrapped and put under the tree – at 1.30am, only to be woken at 2am by Lil Z who was having one of her “episodes”. She wakes for no apparent reason and begins crying and screaming as if she’s in pain. Nothing you do can calm her. She cries for around 10-15 minutes and then suddenly stops, yawns and her eyes start to close… and then it happens all over again. There is nothing to do except cuddle her and wait it out. I’ve got no idea what is causing these episodes – it could be seizures, stomach pains, or something completely new. We’re having an overnight EEG in early 2014 to see what is going on with her brain when she’s asleep, but for now they seem to be increasing in frequency. It used to happen once a month, now it happens several times a week.

I got her back to sleep fairly quickly, but it happened again at 4am. When she started crying again at 5am, I nudged QB and told him it was his turn. So, when an excited Vegemite woke me at 6.30am, I wasn’t exactly full of Christmas cheer. And it turned out that Lil Z had fallen back to sleep… which meant poor Vegemite had to wait (less than) patiently for her sister to wake up before diving into the prezzies.

The whole build up to Christmas had totally passed Lil Z by… She enjoyed a few Christmas parties, grudgingly sat on Santa’s lap with her sister, and squealed loudly through Vegemite’s nativity play. But the whole idea of Christmas isn’t really there for her yet.

Add to it the fact that with a special needs pram to purchase and her specially designed support chair nearly completed, I decided not to spend a lot on Lil Z’s presents this year. She doesn’t play with toys, has cupboards full of clothes and more books than you could imagine, so she doesn’t need a lot of presents either. But with Vegemite being very conscious of who gets what, I didn’t want to send a message that the girls were unequal either. So, Lil Z got a few toys and also some odds and ends under the tree this year – enough to be a good haul, but not so much as to further clutter up our new house (which has less storage).

I knew that Lil Z wouldn’t be particularly interested in opening her gifts, but I guess I’d hoped that she would have some interest… It wasn’t to be… Instead she stared determinedly at the television, hoping someone would switch it on. She looked briefly at her gifts and then back at the television. And then she had a vomit and required suction in the middle of the celebrations – fortunately Vegemite has seen it all happen enough that it didn’t slow her down in the slightest. Then Lil Z got frustrated with no television (and probably me trying to get her to look at her presents) and started scratching her ears. I finally resigned myself to Lil Z not being involved in present opening and bounced her on my lap – which made her happy.

She was unsettled all day and had a long nap in the late morning. She also had a long nap on me. When she was awake, she didn’t have any interest in her toys but was quite content to roll around on the floor and watch cartoons while bouncing in her chair.

Some day, Lil Z may be excited by Christmas. For now, however, I need to remember that what makes her happy isn’t all the special things we do over the holidays, but her ordinary, every-day activities. Perhaps the special thing about Christmas for her is that she has her whole family at home, all day, and not rushing about trying to get things done.

I will need to remember that next Christmas.

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