Friday Fitting

By the time Friday comes around, we are all exhausted in our family. Joshua was very weary when he got home from school, he went through to his den and curled up on the settee where he dozed while waiting for his tea to be ready. He ate his quiche greedily, then resumed his sleeping position, contented that he was full again. We made the most of the quiet and had our late lunch/early tea and Joshua unusually appeared just as we finished – usually he arrives as we sit down to eat and then creates as much distraction as possible ,so that he gets my attention!

My husband declared that he wanted the first bath, but Joshua heard the water running, and he muscled in on his dad’s bath and he jumped his place in the queue! Joshua enjoyed his bath for about 20 minutes and then, unusually, he stood up to get out. As I looked at his eyes, I saw that they were rolling in his head and I immediately recognised that a seizure was imminent ,so I lowered him back down into the water, before he fell down. As the seizures arrived, I was able to hold his head up but I was trapped under him, so I shouted for his Dad to come to help us. Luckily he heard me and came quickly, as the seizures rumbled on. While his Dad lifted Joshua up under his arms, I grabbed his feet and between us, we maneuvered him out of the bathroom and down the corridor, to lie on  towels on his bed. I marvelled to myself at how I had managed such a procedure earlier this year on my own, as it seemed to be difficult, even with two of us last night.

As the seizures still kept coming, though slower, on his bed, my husband passed me his rescue medication. I am always reluctant to administer it when the seizures seem to be slowing down, so I told him, one more and you will have to have your Midazolam, while waving the syringe in front of him.  But my threat did not work as another came, so I gave him the drug, then lay next to him on his bed watching the seizures finally subside. They took up to ten minutes to stop completely and then soon after, Joshua had no option but to close his eyes and fall asleep. The combined effect of  a full week of school, eight minutes of fitting then the anesthetising drug, took their toll on him and he fell into a deep sleep with both small dogs on his bed to loyally guard and protect him.

That is the second dose of emergency medication that Joshua has needed in less than a week, so that is not good. It will leave him drowsy today still, as it’s effects stay around for at least 24 hours, so that is not the best start to his weekend. But I am glad that on both occasions recently, he has been at home and so we have been able to move swiftly , he has been able to sleep it off afterwards in comfort and the Midazolam has done its job, so there has been no need to involve ambulances. The ruling is that 999 has to be called if the rescue medication does not take effect within 10-15 minutes, and thankfully on both of these latest occasions, it has worked in a timely fashion. It is always stressful, even after years of experience, as the threat that the seizures will not respond is ever present and a hospital admission, or a visit to A&E, is the last thing that any of us want ,or need, at present.

Sleeping Myself Better

Joshua said a new word last night in his bath, which was very exciting; He watched me close my eyes and he said “tired”. I  opened my eyes and asked him what he said, as I had never heard him use it before, and he repeated ” tired”! I told him that he was right, I was very tired. It was particularly thrilling as he was not simply repeating something that I had said but it showed real sensitivity and understanding; He had looked at my face and found the right word for what he saw, which he has never done before. It shows how much more aware he is of things and people around him, in the past he would not have noticed if I was tired or not, so that is something to be celebrated and shared.

It was also a useful new word, as it describes how I have been feeling most of the time lately. The emotion of the last few days, seems to be taking its toll and so I regularly feel exhausted. I am struggling to keep my eyes open much later than 7 pm. Of course, the quality of my sleep is not as good as usual; the night before last after 90 minutes of sleep, I awoke in a panic and ran around the house checking that everyone, including the new pups, were OK. It took some time to get back to sleep after real terror like that, as my heart was racing.

I am sure it is my body’s way of recovering and protecting itself, but I am closing my eyes when I can or need to. So Joshua has probably seen a more tired Mum than he has noticed before too. He has walked in from his den and found me asleep on the settee twice that I can think of, and he has either woken me with his cold hands on my face or he has sat next to me – well more like on me!- quietly. He will be trying to process what is going on too I am sure, as he will recognise that his Mum is not her usual self.

That being said, I cannot wallow in grief and self-pity with Joshua around, as he will simply not allow it, so that is helpful. We had a lazy day yesterday at home but we did two things that Mum would definitely have approved of : my husband and I filled our hanging baskets with plants, removing the dead wood and weeds from last year’s baskets that were still hanging. Both Mum and Dad were blesssed with green fingers and shared a love of gardening, so they must have despaired of our unkempt plot. So this job was one that I wanted to do. And in the afternoon, in the pouring rain, we went for afternoon tea at a local walled garden. We had taken my parents there several times, always on scorching summer days, and it is a peaceful, beautiful environment. But yesterday, on the Bank Holiday of course, it was very busy and the heavens opened as we walked to the garden. We sheltered from the rain in a cactus house to drink our tea and eat our scones. It was still good to get out of the house, as I have not wanted to venture very far from home lately.

I was very grateful of the long weekend, I certainly needed it to re-build my strength, as I think that the week ahead will be one filled with more tears and essential paperwork. But I am very lucky that I will do it all with my big sister by my side, so I will not need to feel alone.

Then there were three

It seems such a long time since there were just three of us living here as Mum came for Christmas last Sunday and before that, we had Yorkshire Grandma living with us, so it seemed quiet yesterday morning once Mum went home.  I think that Joshua might be confused and disappointed this morning when he comes downstairs to see neither of them sitting in the snug and he will have to make do with just his parents! He has certainly enjoyed having Granny and Yorkshire Grandma here to interact with, although he still insists on Mummy doing the bath and bed routine.

I had ambitious plans of all the things that I was going to do around the house yesterday, like tidying the bedroom and finding homes for our new presents. I had even started the day off well by going to the pool at 7am for an early swim, as the website told me that the leisure centre was open. But it was incorrect and all was closed up in darkness when I arrived and so I walked the dogs along the prom instead watching the sunrise over the sea. But the reality was that, after that,  I was exhausted and every time that I sat down, I feel asleep. I had a fuzzy head and my achilles was aching, so that tried to sit with my feet up , which was a sleepy position. I managed to make meals, put a load of washing on, hoover up downstairs with my new cordless vacuum cleaner and fill up the bird feeders ,but that was about it in terms of chores.

I did not leave home all day, so I am hoping that I will have more energy today. It seems that being hostess took more out of me than I thought, which I find surprising as I felt as though I was pretty relaxed while cooking on both Christmas and Boxing Day and both my husband and my Mum helped out.I was not catering for the large numbers that we have had staying in the past, so it must just be that I am getting older! My achilles was definitely complaining as I had been cooking in bare feet – my feet get too hot in slippers and i had not been wearing my supportive shoes either – so that is a clear sign of wear and tear as I had not run a marathon, just made a roast dinner!

Luckily Joshua was happy to have a quiet day too , pottering around, watching his various DVDs and even dozing with me sometimes. He was not kicking the front door, asking to go out, so maybe he too needed to chill out. Perhaps we both took the slogan on his new Christmas pyjamas too literally -‘Tis the season to be sleepy’! I am happy to allow myself one such lazy day , as it was clearly necessary, but I do not want to waste all of my holidays in this way.