I had two doozies on Friday but the count over the weekend was none. I therefore was able to see the kids more on Christmas Day than I feared. That’s not to say that all seizure activity ceased for the festivities, but the mini-me seizures are 95% less debilitating than the doozies.
I’ve had four mini-meizures over the last few days (including one as I was drifting off to sleep literally as the clock struck midnight to turn Christmas Eve into Christmas, which seemed symbolic, though of what I’m not sure). For that I am grateful beyond belief as I was able to enjoy some precious moments.
‘Twas the Night Before Christmas
On Christmas Eve at around 6pm, we all (four Coles and two Turners) went to see Christmas lights at a nearby house. The house in question has an amazing display that gets better every year; what’s better is that there is parking outside the house (with no neighbours inconvenienced) and signs welcoming you into the garden to take a look around. There’s a box for charity donations for the Great North Air Ambulance. (It’s near Dipton and worth checking out for those in the area who aren’t aware of it.)
Jennifer and I have been to see it for the last couple of years, the first time with my Mam, and last year just the two of us. A trip on Christmas Eve came about last year only as a result of it being the only time I could squeeze in a visit with my girl. It turned out to be a special treat before bedtime for Jennifer and a good way to get us into the Christmas spirit. Inspiration for tradition coming about by disorganisation!
Therefore, this year I asked Graham if he could take the kids on Christmas Eve whether I was able to go or not. At the last minute, I felt well enough to be wheeled around in the freezing cold (it was actually a relief for my newly warm-blooded body to feel a bit chilly). Jennifer, my Mam and I were once again blown away by the display and not just the cold wind whipping through our coats. Leo, Graham and even my Dad (quelle surprise!) were impressed and enjoyed half an hour looking around.
The Wake-Up Call
Yesterday, I was awake from 5.30 am not because of the pitter patter down the stairs of an excited little bear but because of the Steroids with their mandatory Wide-Awake Club drill every morning anytime from 4am! Consequently, I was awake for a good couple of hours before Jennifer came downstairs; I was desperate for her to get up so that Christmas could get started! Leo, meanwhile, had been up since around 6am and was growing increasingly inquisitive about the presents he had seen.
Jennifer woke up just before 7.30am (her usual time). She asked as she approached the bottom of the stairs if there were any presents. Graham said he wasn’t sure so we’d better all have a look. She held my hand and we walked into the living room (followed closely by Graham and Leo). She excitedly proclaimed “he’s been, Santa has been, yeah” over and over and jumped around the room waving her hands in the air. I found it very emotional to watch her experience, in that moment, the magic of Christmas that I remember so fondly.
Postcards from the Pensieve
I used to go downstairs excitedly on Christmas Day with Graeme after we had checked with the Rents that we were allowed. We were usually told that we could if it was an appropriate time, although I remember a couple of times being told it was too early. Mam asked us not to open more than a couple of presents until the folks joined us. She told me years later, of course, that once we’d discovered that Santa had been and were waiting impatiently for the folks to join us so that the grand opening of presents could begin, we didn’t realise that they’d just gone to bed a few hours earlier due to last-minute preparations. They were struggling with the sleep-deprivation known to practically all parents on Christmas Day!
The one exception to my unadulterated excitement of Christmases Past, however, was that, unlike Jennifer, I had momentary fear and panic before discovering the presents. Not fear that there wouldn’t be any presents, which would have been very disappointing I’ll admit, but fear and panic that Santa would still be there. I was simply terrified of Mr Claus (and anyone else dressed up).
I therefore hung back in the hallway while Graeme went into the sitting room and I whispered “has he been?”. After receiving confirmation in the affirmative, I immediately followed up with “is he still there?”. I required confirmation in the negative before entering the room and my excitement was unleashed. The only thing that my younger self could imagine that would be worse than Santa not leaving me presents was the idea that Santa would leave me presents and still be hanging around, which would have terrified me beyond belief! I should add that I was terrified of anyone dressed up, not just Santa…
Up and Down
Although I sincerely hope that it isn’t, this Christmas could be my last one. It could be anyone’s Last Christmas, of course, but the Squatter is a ticking time bomb in my head that can’t be ignored. Therefore, although seizures, energy levels, hospital appointments, mobility and my emotional state can conspire against me at times, I have a general determination to make the most of moments when I can.
Making the most of Christmas this year took extra effort for me, particularly after being awake from 5.30am. But I was determined to be there for the two hours or so it took to open all our presents. There was joy, excitement and hilarity (and not just in a “making the best of it” kind of way) that I wouldn’t have wanted to miss. Jennifer immediately put her Skye (from Paw Patrol) outfit on over her pyjamas and then put a superhero cape on top of that. She never stopped the excited chatter from the moment she woke up.
We put Leo in his Batman puddle suit and he kept it on pretty much all day, whether he was inside or out. He was generally excited by all that was going on, taking his lead (as ever) from his beloved big sister.
Around 10am, when I was flagging, Graham went outside with Jennifer to assemble the trampoline that Santa had brought for the kids. (Santa had left a note apologising that he hadn’t had the time to build it.) As I was resting, I could hear Jennifer outside with Graham (with a combination of Leo and one or both of my parents at any given time). Jennifer was still in her paw patrol outfit with pjs underneath (with a coat added at some point). Her excitement was palpable and I heard her talking about them building the trampoline “as a team”.
By the time it was assembled, I had rested and was ready to go outside to watch the inaugural bounce. I sat in the sunshine on the garden bench, with a refreshing breeze blowing over me, watching my children playing in and around the trampoline. It sounds corny but I savoured the moment in my mind and marked it as one to treasure.
What goes up must come down, though. After a stunning lunch (venison casserole), I crashed and spent pretty much the rest of the day in bed. I thought a couple of mini-meizures might turn into the Full Monty but I was glad to be proved wrong. The second of the mini-meizures occurred just as Dad and Graham were literally saving the trampoline from blowing out of the garden and frantically taking it down partially to secure it during the 20 minutes or so of crazy winds and rain that had been threatening all day. Never a dull moment with the Turner-Coles!
I feel that I enjoyed the highest of highs that I could in imperfect circumstances. The bigger the crest of the wave, though, the deeper the trough. I therefore knew that to get so high and cherish the moments I could during the day, I would have to experience the trough of tiredness and possibly seizures. The trough wasn’t as dramatic as it could have been yesterday, which meant that we enjoyed a final bit of family time before the kids went to bed, but I’ve felt KO’d today, appropriate perhaps for Boxing Day!
Pensive Postcard from the Pensieve
Graeme was, quite simply, the most enthusiastic male present-buyer I have ever known, and he nailed it more often than not. He was also the easiest person to buy for. Christmas will never be the same without him, not least because of his joy and enthusiasm for giving and receiving presents. In adulthood, he always opened first the gift(s) from me. Knowing how much he looked forward to the presents I had bought made giving him presents the most enjoyable part of Christmas.
I enjoy receiving gifts as much as anyone but I was reminded of this all-encompassing joy of giving to my brother when I saw Jennifer open her presents. (Leo was excited too, by the way, including being enthralled by taking the wrapping paper off and trying to re-wrap the presents!)
Another reminder (as if I ever need one on any given day) of my dear brother was the partial theme of the day (particularly for Leo). Uncle Graeme would be pleased with the amount of Star Wars and superheroes presents that Graham and the kids received!
PS A year ago tonight, our boiler gave up the Ghost of Christmas Future, and we moved in temporarily with my parents. Almost everything has changed since then but some things, like my parents’ hospitality, are reassuringly constant!