Been such a busy housefull, that it felt very quiet once our visitors went home yesterday morning. As I tried to find homes for all of the new gifts that we have received, dressed Joshua in one of his many new festive jumpers and put the Christmas tablecloth away, it really felt as though the festivities are over. Yet whenever I open the fridge, I am reminded that we still have a lot of food to eat up as we bearly scratched the surface of all that we bought. The kittens are still enjoying the fun of the Christmas tree, bopping the baubles that dangle in front of their eyes, they seem to think that it is a giant toy, put there purely for their pleasure. I love all of the pretty lights, both indoors and outside too at this time of year.
My husband drove his parents home and so Joshua and I had an afternoon out with a friend and her son, who wanted to try out his new Christmas bicycle. We wrapped up and walked to the seafront with their gorgeous, well behaved dog – leaving our naughtier dogs behind – as it felt as though we had enough responsibility with an 8 year old on his new bike and Joshua in his wheelchair, without adding another dog into the mix. It was a beautiful sunny, crisp day with us – my thoughts go out to those many flood victims. When we reached the sea, the promenade was busy with families walking off their Christmas excesses and we sat at a cafe enjoying a hot drink or an ice cream! Their beautiful dog was so well behaved, apart from the muddy puddles he splodged in in the park, and so touching how protective he was of his young owner, and of Joshua too.
This dog sadly shared epilepsy in common with Joshua and later last night, we heard the devastating news that he had begun fitting uncontrollably and he had died. It is still shocking this morning as we had had the privilege of sharing his last afternoon and he has been taken far too young. Joshua will be sad when he realises that his buddy is no longer around for cuddles and fun. It is just one more reason, as if I needed any more, why I hate epilepsy.
Posted on December 27, 2015
Has it all finished now? It always surprises me how quickly the Christmas festivities pass by, after weeks of planning, shopping and wrapping. We had a great Boxing Day with my sister, niece and brother in law joining us for the day. Joshua was still asleep when they arrived at midday but as he heard his Aunt laugh, he sat up and decided to get up, after my powers of persuasion had not impacted on him at all. He was delighted to see them here and he really enjoyed their company, despite still feeling a bit washed out from the after-effects of his emergency medication the night before.
We re-enacted Christmas day as we pulled crackers again and ate another roast lunch, all around the big dining room table, only this time my sister provided two desserts which went down very well. After clearing away, most of us took six dogs for a walk down our lane to get some fresh air and then when we came back for a cup of tea, we played two new Christmas games : Sprout Roulette which involved me and my husband having to eat too many brussel sprout flavoured chocolates, which left me feeling a bit sick, and then a festive ‘Guess Who I am?’ game, which made us laugh a lot and Joshua loved it when the correct guess was made and he joined in with the cheer!
Then we had a giggle as my niece used her new selfie stick to take a family group photograph of us all surrounding a surprised Joshua on the settee. Lots were taken and there were some really good ones, reflecting the fun that we were having. Then our day visitors left and I had some time to ‘play with my presents’ before the routine of an evening meal and bathtime kicked in.
Joshua was on much better form yesterday, than on Christmas Day, like the bright days that often follow on from a storm, and now we start the count again, one seizure free day…..
Posted on December 26, 2015
It does not give me any pleasure to be right, but Joshua had a seizure that knocked him off his feet on Christmas Day – his first since 19 November, so he enjoyed 35 seizure-free days! People have asked if it was the excitement of a visit from Father Christmas but I really do not think so, it had been brewing from the early wake up yesterday morning. He had worn his helmet all day as he was agitated,would not sit still and was constantly staring upwards, so that he was in and out throughout the day and it really felt that it was just a matter of time….
He had enjoyed pulling crackers at the table and had gobbled down his homemade tomato soup for lunch, but had rejected any turkey or Christmas pudding. He had fended it off until around 6pm, but I returned into the snug to find him lying on the floor twitching in a familiar way. He had neatly fallen backwards between the armchair and settee, avoiding hitting anything hard, so we rolled him into the recovery position and he lay on the floor, with a cushion under his head, for a while, before kneeling up. In a way it was a relief that the threatened seizure had finally broken through, as we could see its impact during the day.
Joshua sat next to his Nanna on the settee but even 30 minutes later, he was still trembling and so I had no option but to administer his emergency medication, to try to curtail the effects of the seizure. I use a syringe to get the anaesthetic into his mouth, to be absorbed through his gums, and then we wait for the shuddering to stop. I took him to his bed where I snuggled him, but I think I must have fallen asleep, as soon as my head hit the pillow as the next thing I knew was that it was almost 8pm but Joshua was staring next to me, so I am not sure if he rested at all, but he had made no attempt to get out of bed. I left him in bed to doze awhile longer.
Joshua got himself out of bed around 10pm but he was clearly still not really with us, he continued to demand ‘cake’, which had turned out to be chocolate that he had wanted earlier in the day. But I gave him some toast and a bowl of cereal. I feared that it was going to be an ‘all-nighter’ as one by one our guests went to bed, leaving us to it. But thankfully I did persuade him to bed sometime between 2 and 3am, 24 hours after we had got up!
As my sister, brother in law and niece are joining us today, for celebrations part 2, I really hope that he can rally today and enjoy another family day. If anyone can tempt him out of his stupor, then it is the combination of his Granny, aunt and cousin so, fingers crossed…….
Posted on December 25, 2015
Joshua woke me up at 2.30 today saying ‘ go go go!’ So we opened his stocking as Father Christmas had paid a visit and decided that he had been good enough to deserve gifts . We tucked into a few chocolates and a bag of bbq beef hula hoops. We enjoyed them then Joshua settled down in bed to enjoy Lion King after throwing my glasses away under the bed- no need to behave any more since Santa had already been, secretly in the wee small hours, Not arriving with any fuss or drummers drumming!
He has had a familiar staring look in his wide- eyes which suggests to me that 35 days of no seizures may be our record, but what an unbelievable record!! If fitting became a once a month activity then our lives would be much simpler and less disrupted. There would be no need to cancel as many planned events and fewer mercy dashes to school.
I have been wearing a butterfly ‘wish string’ on my ankle since October and it broke yesterday. The deal is that you make a wish when you tie a knot in it and then when it breaks, the wish is due to come true. So let’s wait and see if my wish could possibly come true!!
This promises to be a busy day surrounded by family enjoying lots of food together. Present opening will take place , but I get much more pleasure out of choosing and giving the gifts than receiving them to be honest, so I hope that my parcels are well received and bring a smile to their faces.
Merry Christmas one and all
Posted on December 24, 2015
We are hosting Christmas dinner for my Mum and my parent-inlaws, and so I need to do the food shopping today, although the staples of turkey, potatoes and Christmas pudding are already in hand. Normally we would go food shopping last night all together, along with the rest of the world, but I was out at my work Christmas meal and Joshua decided to sleep all evening, to ensure his dad did not take him out to the supermarket!
So as I am awake and up early, I think that I will get there for the store’s opening at 6am so that I can go before both boys wake up, as it will be quieter and so much easier than later with Joshua in tow. He does not enjoy shopping at all, of any description but least of all food shopping. At least in the supermarket, he is trapped in a wheelchair, fixed behind a trolley, so he is limited in how he can protest. He tends to eat grapes or crisps as a distraction as we pass up and down the aisles. Whereas without him I can whizz up and down the aisles without any distractions and get the deed done.
I have been writing lists of the jobs that I still need to complete today, before our visitors arrive, so I am glad of this early start as it is still a fairly lengthy list. I am hoping that I get everything done early enough to be able to attend the local carol service. We do not need to panic too much about forgetting anything as our local supermarket will re-open on Boxing Day. I consider myself very fortunate that our offices are now closed from today until after new year and so, I do not need to return to work again until 2016.
Joshua will enjoy certain aspects of the festive season:
- The family coming to visit will thrill him and he loves everyone being at home together
- Pulling crackers at every mealtime, which continues to be so exciting that we have to pull both ends to get maximum value from the experience
- Being able to sleep in until midday, with no need to get up before 8am
- Some of the Christmas food, including the spectacle of the entrance of the flaming Christmas pudding, imagining the pipers piping it in for drama
But he has never shown any interest in opening or receiving presents, so we are not burdening him with too much. Without us going over-board, he already has quite a stash of parcels under the tree accummulating, he is a very lucky bo
Posted on December 23, 2015
Joshua and I had a lovely day out with a friend and her son yesterday: we went to a children’s theme park with gentle rides and interactive displays where you pushed buttons to get noises or a response, silly mirrors and other such fun activities.Joshua began the outing well by dragging my friend around, rejecting his wheelchair, and eager to see everything. His highlight was when he pulled her into a cafe, he was not taking no for an answer, as he needed a sit down and a hot sausage roll.
After his brunch, he agreed to use the wheelchair as we continued to explore. As Joshua has such long legs now, we struggled to fit him into the childrens train and sledge rides as they were designed for smaller children. We encountered a new phrase relating to disability as some rides were deemed not to be suitabe for the ‘non-ambulant’ which is not an expression that either of us had met before! I questioned an embarrassed attendant about it and as he looked Joshua up and down to assess his abilities he explained ‘ Its for those that, you know, really can’t do anything at all!’ Although I enjoyed the old fashioned, quirky nature of the park, some staff training was required on customer service and how to address their disabled guests.
The highight of the outing was the Christmas Experience which involved a ride through a winter wonderland topped off with a visit to Father and Mother Christmas. Joshua was underwhelmed in the queue, as he dozed off, but it was Mother Christmas who caught his eye and made him smile! He posed for a photograph with Santa and reluctantly took his gift, but he beamed at his wife, which made us giggle.
The threatened rain held off until about 3pm when the heavens decided to open, Joshua and my friend sheltered under a tree as I was on a water ride with her son, getting doubly soaked! Oh my lord, the water was cold and our little boat looked so unstable that we felt as though we might have tipped in as both of our weights were on the same side as we huddled together. As the rain did not show any sign of stopping, we took this as our signal to leave and we had a very damp drive home, but we had enjoyed our visit very much. Joshua enjoys an outing but I have to say, the most excited that he was all day, was when he got back in the car to go home!