Game Plan

Yesterday I began what will be a busy weekend combining both work and fun, which has required a lot of planning and a lot of flexibility and assistance from others. I am working today and tomorrow morning in the North West, but when I ‘clock off’ at midday tomorrow, then I will be going to the theatre, to see the musical ‘Matilda’ , with Joshua and a friend and her son. So I will need to be adaptable to switch from work to play mode, from employee to mother/friend mode and back again, as I revert to working again on Sunday. I bought these theatre tickets as last year’s Christmas present for us all, so it has been a long time coming. But in August I won a contract and the client insisted that this was the only weekend that the project needed to take place. At first I said no, it was impossible as I had a prior commitment that I was not prepared to miss. The client was insistent, so I then began to work out if I could combine the two things and if so, how it could happen.

So Joshua and my friends will be arriving by train tonight and I will meet them at the station as my work commitment will be over by 7.30pm and we will have what is left of the evening together. I hope that Joshua behaves during the two hour train ride, but she is armed with the ipad if ’emergency Shrek’ is required as a distraction. H eis often exhausted by friday so he may sleep on the train ride. I imagine that he will be surprised to see me pop up at the railway station. I will sneak out of the hotel tomorrow morning as I have to work again, leaving  them all to play and I will be able to join them from midday for the rest of the day.

But then on Sunday I will have to leave early as I have to drive to London and to work again, leaving my friend to take her son and my son  back by train, where he will be met by staff from our respite provision , who will take Joshua off her hands, as this should have been our respite weekend. So I have only been able to achieve this weekend through the cooperation of both my friend and the flexibility of the respite provision, who will keep Joshua all Sunday day and night, sending him to school on Monday morning as usual. By the time Joshua will get home from school on Monday afternoon, I should be well on my way home!

It is complex plan and I have left my husband with a detailed list of where Joshua and me are at any point over the weekend and who is in charge of him. We are lucky that Joshua is adaptable as this weekend would be a test for anyone, let alone someone who may not understand plans. I am hoping that he will just go with the flow and enjoy the variety of carers that he will experience this weekend. Watch this space though……

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Tales of the Unexpected

Almost just as soon as I posted my blog yesterday, Joshua began to have a cluster of seizures ; he was curled up on the settee next to me, just dozing off, and then his breathing became laboured and his eyes opened and his arm tensed and stretched out. I sat next to him, grabbing my phone to time the seizures, and held his hand and stroked his back, to reassure him that he was not alone. He had 11 of those seizures in just five minutes and so I left him to go to the kitchen to fetch his emergency medication, as it was not looking as though they would stop on their own.

The seizures started to slow down in frequency, as after 9 minutes, he had endured 14 seizures and gradually they stopped, without me having to intervene, but it was an intense quarter of an hour for us both. Joshua then only wanted to sleep, so having been up and lively since 3.30, at around 6am, he went into a deep sleep. I suspect  that he had a sensation that the seizures were on their way, since 3.30, possibly that was what woke him up and so it will have been with some relief that they finally arrived and in a way, he could now relax.

But this gave me a dilemma, when at 7am he was still fast asleep and I would normally have been giving him breakfast. I have found in the past that, if he is woken before he is ready, that he is more likely to begin fitting again. So I decided to cancel his taxi to school and to text work to say that I would be late into the office, and to see how he was once he woke up, only when he was ready.

Joshua did wake up after almost three hours and he seemed to have recovered – he slept himself better! So I got him dressed and set off to school, where we arrived almost an hour after his usual start time. He was happy to be there and he greeted everyone that he saw on his way in, telling many of them that he ‘liked’ them. I was confident that his seizures were behind him, but you can never really know for sure, you just need to have faith that the school staff will do the right thing for him, should seizures begin again. They have school nurses there who have his emergency medication if required.

So I returned to our home town, where I work, and got into the office by 11am, feeling as though I had done a day’s work already!

Life is what happens when you’re busy making other plans!

One of the many things that I have learned, having Joshua in our lives, is to embrace flexibility and the ability to be spontaneous. His seizures can force me to change my plans at short notice, whether I like it or not. This flexibility was fully tested yesterday :

After my work yesterday, I returned back to Mum’s house to collect Joshua from her care. He was pleased to see me, gave me a bear-hug, and I suspect that Granny was relieved to get her house and life back to the way she likes it too. I packed the car and we were on our way within ten minutes of getting back. My plan was to divert on the way home, to see my friend’s new flat, where my husband had been helping her to move in all day. The deal was that I would arrive once all the lifting was complete and that we would all have a takeaway tea together , to christen the new flat.

Sadly Joshua’s epilepsy had other plans as he began to have seizures, on the motorway as I was driving acorss the pennines. It was frightening as there was very little that I could do being alone, other than hold his knee next to me and try to reassure him, as I counted 25 seizures in ten minutes. I cannot recall that stretch of motorway at all and I know I was just intent on getting to the motorway  services, where I could stop safely and attend to Joshua. He was still fitting when I could stop and so I jumped out of the car, went round to the passenger side and administered his emergency medication. I then sat next to him, waiting for it to take effect – it can take up to 15 minutes to stop the seizures. Thankfully they stopped within about 7 minutes and then I waited to be sure and I reclined his seat , so that he could sleep. But he refeused to relax, he would not rest back on the reclined chair. After about half an hour, I  decided it was safe to continue my journey.

I arrived at my friend’s new address at around 6pm, and called her , only to find that they were back at the old address picking up the final boxes. As this was an hour away and as Joshua looked so pale and exhausted, I apologised but decided to take him home rather than waiting another hour for them to get back to where I was already waiting. I was really disappointed, but I know it was the right decision for Joshua. We were home before they had returned to the new flat, and that included a trip to Donalds Drive-In to try to cheer him up – it worked, as he was shouting ” Doanlds” at the  payment window and he devoured his Happy Meal. Often seizures make him hungry or thirsty , so that was another good decision and it meant that I did not need to cook once I got home.

So Joshua’s epilepsy has tested my decision-making skills to the limit : it is never an easy decision to administer his rescue drug as it has such a dramatic impact on him, but  when the seizures do not look as though they will not stop on their own, it is a necessity. It is a further test of putting Joshua’s needs first : I really wanted to see my friend and her new flat, but she understood that I had to put him first and there will, I know, be plenty of other opportunities to visit her. So the journey did not go to plan but that’s nothing new. As John Lennon said ” Life is what happens while you’re busy making other plans!”