Deja Vu

I am out of practice at being up at this end of the morning. Joshua was brewing a seizure all evening: I got home at 6.30 to be greeted by Yorkshire Grandma telling me that he had refused to eat his tea, that he was very restless in behaviour , he was wearing his helmet and he was shouting loudly. He had had a small seizure before his tea but clearly they were not over for the night. He had an early bath and seemed to settle down, even asking for bed soon after 8pm. But he did not fall asleep, he was agitated and he continued to jump out of bed four more times, when I would meet him on the stairs, turn him around and steer him back to bed. I tried both cuddling him to sleep and the more stern, kiss and leave approach but neither worked.

On the final occasion, we were going to bed too at 11pm, so I decided to sleep next to him as I was not comfortable with how he was behaving. Even then he was not sure if he liked me there – he would wrap my arm around him tightly – or he would smack me and try to push me away. I think I must have just nodded off, just before midnight, when I woke with a start as he was having a  violent seizure across me. I came too quickly and was able to reassure him. This was clearly what he had been expecting all night yet it did not land until 11.54. Afterwards he was cross and refused to stay in bed, I wrestled with him for a while as he was still trembling, but then I gave in and we came downstairs. He had some Weetabix and watched some Shrek, and I thought that we were all set to be up all night – like we did for two nights running in the bad old days.

However, just now he has taken me by the hand and led me back upstairs as he wanted to return to bed. I have left him to it but I am watching him from downstairs on the baby monitor to ensure that he settles and so far, it seems that he has nodded off, exhausted. After such a rude awakening and a quick rush of adrenalin, I will not be able to get back to sleep straight away but I am mightily relieved if Joshua is able to. This could be a long night.

So just let me be beside the seaside and I’ll be beside myself with glee

We had a quiet day yesterday , mostly staying home, as Joshua did not sleep at all the night before, due to the after-effects of his seizure. We managed to keep him in bed all night but that was through  a combination of films on my ipad and wrestling him down onto the pillow. I did the first shift from 10ish until 4am, but I gave up then and woke my husband to take over from 4 so that I could have some sleep too. When I woke three hours later, I crept into Joshua’s room , delighted to see him lying curled up in a sleepy position, but as I peeped at his eyes, they were still staring, blood shot and open! His eyes stayed that way all day too, he looked awful, as though he really needed a good sleep but his brain simply would not allow it.

He stayed indoors all day, wearing his helmet, as he seemed to be threatening more seizure activity, so he simply alternated from the settee to his bed and back again. It was such a sunny day that at 6pm I decided to take him out along the promenade for some evening sunshine with the dogs. There was not a cloud in the blue skies, it was stunning, and Joshua jigged in his wheelchair and enjoyed the beach tour too. My husband took the dogs onto the sand and they enjoyed the play too, as they had become resigned to a garden day.

As Joshua was brighter than he had been all day, we opted for a spontaneous meal out in a beautiful restaurant overlooking the beach. They squeezed us in and we watched children and dogs playing at the shore, then two horses galloped by as we waited for our order, so there was plenty to occupy Joshua. He ate more of his fishcakes than I expected him to but my husband and I virtually licked our plates, our dishes were so tasty, so it turned out to be a very satisfying walk indeed. Whether or not it was the fresh sea air, change of scene or the meal, I am not sure, but when we got back to the house, staring Joshua finally closed his eyes on the settee and he continued to sleep once I transferred him to bed, where he is still asleep now, which is a much better outcome than I was dreading.


Out of Control

Joshua seems to have enjoyed his first experience of Summer school: he was excited to go there and he came back with his face painted like a dinosaur! He has never had his face painted before, he would not tolerate it in the past, but apparently the face painters were two ‘young pretty girls’, so he will have enjoyed their attention. He was still giggling at his own face in the mirror last night, before I washed it off in the bath.

But perhaps it was the excitement, or maybe it was the seizure that he had at 4pm, at home, but he did not sleep last night at all. I stayed with him trying my usual tactics – a cuddle, a story, some cereal and finally at 1am , in desperation, I reached for the sedative. When I left him alone in the dark, he started calling out to me, so at 2am I delivered him to my husband and told him that I needed some sleep. I managed to grab 3 hours, before I awoke and heard him watching ‘Lion King’, calling my name and wandering about in his bedroom. So I got up and have brought him downstairs for an early breakfast and his medication. While I am up early, I have baked some brownies to distribute on my travels, so every cloud….

I wonder if he knows on some level, that I am going away this morning, staying away for work overnight. Does he realise that I will worry about him more now as he looks to be threatening another seizure? I will be leaving him in his Dad and Yorkshire Grandma’s capable hands, but nonetheless I will still fret that I am not here, taking care of him. When we are apart, my imagination can conjure up terrible scenarios, especially when nobody answers the telephone. I will be back tomorrow afternoon, but until then, I have to hand over the reins and trust in my stand-ins.

The Fundementals of Caring

Joshua did not sleep last night – Thursday has become his favourite night for that lark these days! – and so I found myself up and in the snug at 2.45am, when he had wriggled out of the top of the bed and got himself stuck. I told him that he needed a good nights’s sleep ready for his outing to the zoo today, but he took no notice at all. I gave him cereal  and then I decided to make a cake and watch Netflix, so as to make good use of my time in the wee small hours.

I watched a film called ‘ The Fundementals of Caring’ about a teenager with Muscular Dystrophy and his new carer. I learnt that the fundementals are ALOHA – Ask Listen Observe Help then Ask again. But that only works if the person that you are caring for is verbal – I am really only left with OH! At 3am all Joshua had to say, repeatedly was ‘Monkey’ followed by a new word ‘Wonky’! I agreed with him that he was a wonky monkey, but that did not get us very far.

In the film, the teenaged boy with Muscular Dystrophy, rarely left his home due to his reliance on medical equipment and he only ever ate waffles and sausage, for every meal. But the new carer took him out on a road trip so that he could make the most of his limited lifespan. It did seem that his mother was protecting him so intensely, through an understandable fear for his safety, that he was a prisoner in his own home. But his carer showed him some of the sights that he had been reading about.

Joshua is not house- bound in the holidays and he has been to some great places in his 15 years, including several holidays overseas. While he enjoys a ride out in the car, likes to meet up with other people, Joshua is a real home-bird. His face lights up as he says with a grin  ” Back home!”, so much so you can wonder why bother taking him on road trips. But they enrich his life, offer him new experiences, even if he sometimes chooses to close his eyes and ignore them.

He is likely to be tired today for the class trip to the Wildlife Park, and his gold complexion may well be dimmed, but that cannot be helped, he will have to grab 40 winks on the bus ride there and back.

Hello again,hello

I was in school yesterday morning working, so it felt odd driving in without Joshua and I got a few curious looks as I walked down the corridor alone, as though I had forgotten something. But Joshua did not arrive until after 10am, as he leaves respite late, to avoid the rush hour traffic. I was sitting in a public area of school when he arrived and he spotted me at quite some distance – proving that his eyesight may not be as poor as has been suggested. He stopped walking, grinned and  pointed at me as his greeting and we shared a Joshua-bear hug, as we were re-united. He was then reluctant to carry on into class, despite the lure of toast, so I took his hand and lead him in, where other staff were greeted with beams and hugs too. He was clearly content to be back at school.

I did not see him again, as he disappeared into his classroom, and I returned to my office later. So our next reunion was at home after 6pm, after Yorkshire Grandma had given him some tea. This time he was slightly sleepier, so my greeting was less enthusiastic. I read the detailed respite diary and saw to be surprise that he had refsed to have a bath each night that he had stayed there, whereas he loves a bath at home and it can be hard to get him to get out of it. As I read the diary to him, he picked up on the word ‘bath’ and he jumped out of his chair and queued by the door, waiting to be allowed upstairs. He enjoyed a long, luxurious soak and then fell asleep in bed, while watching his familiar, comforting Lion King, so all was well with the world once again.

But I was awoken at 3am with happy Joshua noises, so I went through to see what was going on and Joshua was sitting up in bed. So he has now had some cereal and I have left him quietly to settle down again while I came downstairs but I can hear him, through the monitor, repeatedly calling his ‘mummy’, so I guess this aspect of his nighttime routine is back too, having slept through at respite. Welcome back Joshua!


I am usually good at managing on very little sleep but with just two – three hours on Thursday night, after two more disturbed nights before, I was struggling yesterday. After administering his resscue medication, Joshua thankfully did sleep so I got off myself around 3am , as I sat up watching him for  a while as I wanted to ensure that he was not going to have another seizure. I was up at 5.30am, as usual, despite this  and I had to leave home, for a work commitment, at 6.30. So I took my husband an early cup of tea in bed, just as I was leaving and warned him that he was in charge and to listen out for Joshua who was downstairs.

I was stuck with a blinding headache all day, which began to make me feel sick and to see red, as it made me rather snappy. So when I got back home around midday, I headed back to bed for an hour’s nap to see if that would clear it, but sadly it did not. I was greeted by  a warm smile from Joshua when I re-emerged, as he seemed to be relieved to see that I had not left him alone with Dad for another week!

I consider that I can function pretty well on four hours sleep but my body objects to much less, which is fair enough.I was ready for my bed at 9.30 last night and as Joshua and I snuggled down on the settee together, closing our eyes, my husband sent us to bed to be more comfortable and not to be disturbed in a another couple of hours, when we would inevitably wake up uncomfortable and disoriented.. Sadly Joshua got his second wind upstairs, once I had changed him into his Pyjamas and insisted on a bath before bed. Of course I obliged, but I was concerned that it was one of those delaying bedtime tactics that I had read about. But thankfully, he snuggled down as quickly as I did after his bath and we were soon in the land of Nod. If he is true to form now, he will have a dcent run of 12 hours+ nights of sleep to re-set his internal clock, provided that the dreaded seizures stay away for a spell! And I am reset too as I enjoyed six hours of undisturbed sleep last night so I am , once again, raring to go!

The one where Joshua is unpredictable

Joshua was up early yesterday, with me before 5am, and so inevitably he had his first seizure at 5.45am, followed by another nearer 7am. After two restless nights of not sleeping properly, this came as no real surprise to me. But what was surprising was the good recovery that he made and he was very jolly as I got him dressed and so he was packed off to school, with a cautionary note. I was on edge at work, half-expecting a phone call  to advise me of a third seizure, but none came.

I was in school after lunch and was pleasantly surprised to be greeted with a huge grin and to be told that he had been ‘in and out’ all morning, but that was still an improvement on what I had expected. We had driven from school to Occupational Therapy to check his splint for his arm and even though he had not seen the therapist for 5 weeks, he was delighted to see her and responded very postively there too.

We were back home again before 5pm and Joshua was most disturbed that there was no sign of his tea being made in the kitchen. He ate snacks until Yorkshire Grandma arrived an hour later, to the rescue, with steaming fish and chips for his tea – what a treat! While he tucked in, my husband and I finished getting ready to go out for the evening as we were at a work dinner. It was a fun evening , with plenty of laughs with good company and I chauffeured us home. I was stunned to arrive home at 11.30pm, on a school night, to find Joshua wide awake in his armchair , enjoying The Show and laughing away. Apparently he had refused to sleep all night and still his eyes were threatening the arrival of an imminent seizure, which would be the third disturbed night in a row.

So I took him immediately next door to his downstairs bedroom, and snuggled in next to him, trying to convince him that now that his mummy was home, he could finally give in to sleep. But he had other ideas and I had over an hour of wrestling him to the bed and being pinched. I eventually let him wriggle out of bed soon after 1am and he had some cereal with warm milk in the snug. Soon after 2am, the anticpated seizure arrived and this time I did not hesitate with the emergency medication and thankfully, he was alseep within a couple of minutes, such was his level of exhaustion already. When he does eventually awake, he is going to feel like it is his morning after, so he may well be matched with his father’s sore head.

So that is not a great start to his weekend, although he has recently been follwoing a Thursday/Friday pattern again. Lets just hope that is the end of this cluster, so that he can enjoy his weekend and start afresh at school on Monday.

The American Adventure is over

I am safely back home and re-united with my family  and it is starting to feel already as though I have not been away. I drove home from the airport and as I came up the lane where we live, I could see two tall, thin men walking away from me, arm in arm. It was Joshua and his Dad out for a stroll while lunch cooked. I slowed down my car next to them and wound down my window to say hello; Joshua beamed, pointed at me and shouted ‘mummy!’ which was the perfect welcome. I drove into the drive and Joshua dragged his Dad along to check that it was really me and I was given a bear hug in the yard. Once indoors, he kept doing double- takes to make sure it was really me and grinning, there was no doubt that he had missed me and was pleased that I was home again.

After a cup of tea and sharing out the gifts that I had brought back, I tried to encourage Joshua to take a nap with me but he was not tired and he knelt  up in bed, then began his favourite hair pulling and smacking my back to wake me up. I gave in and we had a bath instead. Then I took a three hour nap on my own while poor Joshua had to watch an England football match with his Dad.

Joshua seems to be brewing a seizure as it is now 1.30am and he is still awake and staring. Now this could be due to over-excitment or just one of those things, but thankfully my body thinks that it is 7.30pm so I am still happy to stay up with him to make up for lost time!

A ruffled mind makes a restless pillow

So here I am at almost 2am and Joshua is still refusing to fall asleep. I took him to bed around 10.30 as we were all dead on our feet after an afternoon at A&E. But immediately Joshua bounced up onto his knees, rather than lying flat, so I knew that we were in for a rocky ride. It has since then been a battle of wills involving me wrestling him down to the mattress and him reacting badly with his favourite hair pulling and pinching my arm. He finally slid out of the bottom of the bed to escape me about an hour ago.

So I made him some toast , in case he was hungry, then I have reached for the prescribed sedative, which  surely, with him not having slept on Thursday night, it must work on top of Midazolam, his rescue medication. So I am now in the process of ignoring him and hoping that he gets bored and nods off. He does seem to have settled down, so my fingers are crossed. If he continues to be lively, I would say that I would like whatever he is having to keep him on the go, as I am flagging now.

We have agreed to review his respite provision in the morning, but from where I am sitting I am not optimistic that he will get there : Should he have a seizure in their care then they will call 999 and it will be back to A&E in another city. When he is sleep deprived, he is much more likely to have seizures so I am not sure how restful sending him away, late, might be. On the other hand, they are paid to stay awake and check on him throughout the night it could be our best chance of catching up on our lost sleep, topping ourselves up ready for the week ahead. Once again, it is a case of waiting to see…..

Friday frolics

It is as if Joshua needs to remind us why we wanted/needed respite in the first place : he did not sleep at all last night and there did not seem to be any seizure activity on the horizon. He slept a lot again at school apparently and he looked settled in his armchair for a doze when I got home from work. But he was only sleeping lightly as he opened his eyes when I rustled some snacks. So once his eyes were open and he had enjoyed some dry roasted peanuts, I took him up for an early bath. He went to bed willingly enough after the bath and I thought that all was well.

But he did not sleep, he was awake and calling alternately ‘mummy’ and ‘daddy’, hoping that one of us would appear to rescue him. I was watching him from downstairs on the monitor and could see that he was staying put, so he was left to nod off. But he was still awake when I went to bed, so I kissed him goodnight and  went to my own bed where I think I got an hour’s sleep before I woke with him shouting my name on the landing. So I took him back to bed and brought him up some Rice Krispies, which he was delighted about.But no sign of any sleep so, in desperation,  I turned on a music DVD for him to watch and lay next to him.

My husband relieved me at 4am when he took over and I went off to grab some more winks before my early alarm, as I had to set off for work by 6.30am. Joshua was still awake then when I kissed him goodbye, and he shouted ‘no’ at me and pulled his duvet over his head! I told him that I would see him on Monday after school, which sounds a long time off. But that might give me time to catch up on lost sleep and have some fun too!

.P.S I wrote this this morning but Joshua had different ideas. We had a call from school just after midday, he had had a seizure and bumped his head, falling to the floor. He needed his emergency medicine and an ambulance had been called. We rushed to school, just in time to join him being wheeled out on a stretcher, with his head in a brace and him fast asleep. We went with blue light to hospital where we were taken to recuss. We are just home now, as he gradually came round and then we had to wait for his cut eyebrow to be glued back together again. What a brave lad he was, so respite is on hold…truly, life is like a box of chocolates, you never know what you are going to get!