Our respite weekend did not go quite to plan as I had a call in the morning : Joshua had fallen out of bed at 6 am and had bumped his head on the wardrobe next to his bed. I asked if he had experienced a seizure as he can fall out of bed at home due to spasms, but they thought not as he was not fitting when they reached him after hearing the noise from the fall. So I suspect that he either stumbled in the dark or got his feet tangled up in his duvet. I asked how badly he was hurt and was told that he had sustained a bump to the head and as he had a head injury, they followed procedure : They had already called an NHS helpline who had asked if he had ever had brain surgery, and as he has, they advised taking him to A&E to be checked out. I asked how he seemed in himself and was told that he was behaving normally and seemed to have no ill effects.

I know from previous falls and bangs to the head, that hospitals are looking for evidence of concussion, but that given Joshua is non-verbal , he does not respond to their typical tests and so we end up sitting around for hours, until they ask us if he is behaving normally, and then they send us home. So if it is not necessary, I would rather avoid a Sunday in A&E and I explained this to respite deputy who called me. She said she would consult her Head Office and call me back, which she did. Being understandably cautious, HQ had advised her to take him to hospital. As I did not wish this to happen, they could not keep him, having ignored medical advice and so I went to pick him up.

Luckily he is only 9 miles away and we had not, as originally planned, gone further away for the weekend. So I was there in around 15 minutes to be greeted by a very smiley, happy son and two very apologetic staff. I saw the bedroom furniture that he had banged his head on and we discussed plans to prevent a re-occurrence  : they are going to pad the sharp edges. Bed rails were suggested but I asked that those were not used, as from our experience in hospital, Joshua attempts to climb over them and therefore is at greater risk and height. Joshua had a small bump on his forehead, a scratch on his nose and one at the side of his face and so did not look as though he had hurt himself badly at all, much to my relief.

He skipped out and leapt into the car, seemingly pleased to see me and happy to come home and I was relieved to see him too. So we got a day less respite than we had planned, but that did not really matter as we had no big Sunday plans that we were breaking. We had already enjoyed a meal out together on Saturday night and we had completed our planned chores, so it was fine for Joshua to return home early. It is good to know that Joshua’s respite provision have procedures in place and that they take head injuries seriously and I did not mean to undermine them by not following their advice. I was happy to take responsibility for monitoring Joshua’s health at home and if he should have shown any ill-effects from his fall, then of course I would have taken him to A&E later in the day. I was just pleased that we were around to be able to respond and once again, I have to wonder if things happen for a reason.

Back to Normal?

Today I am leaving home early to go to pick up my sister and together, we are heading back to Mum’s home town for another day of jobs to be done : we are meeting a potential caterer at the church this morning, so that they can view the kitchen to assess what they would bring with them. It will be the first time that we have been in ‘Mum’s church’ since she died so that will feel odd and we might even see some friends of Mum’s there, she used to go down there for coffee every weekday. But it will be helpful to confront the space before the funeral next week, as it will be hard enough next Thursday.

We have an appointment with the church minister this afternoon, but she will be coming to the house to see us. We will discuss the bones of the funeral service with her : the readings, the eulogies, the hymns etc. We know what we want to happen, but might need some help with the order and some advice on the length of the service perhaps. She announced the date and time at church on Sunday, so the congregation will all know by now. There was a music concert in church at the weekend, by an instrumental group that Mum was very fond of; we have heard from three people now that they dedicated their final piece of music – based upon the hymn ‘How Great thou Art’ – to Mum’s memory. I found that very moving, even though we did not attend to hear it for ourselves. Fortunately, the violinist from that group will be playing at the funeral, so that is a lovely link that Mum would have approved of.

While we are over, we will also call in at the funeral director to sign some paperwork and we will review old family photographs to use in the order of service. So this promises to be a full on, emotional day. But then, they all have been since Mum died even when we have been quietly at home, trying to relax as we are constantly being advised to do.

Joshua returned to school yesterday and I went to the office, trying to be ‘normal’ , when nothing feels the same any more. I was able to do quite a lot at work in the morning, but then I began to flag later, so I came home mid afternoon. I planned a brief nap before Joshua got back from school but that did not happen, with emails I chose to write and phone calls that I received. Having stayed dry-eyed and calm in the office, I was more emotional at home, so much so that I had tears in my eyes still when Joshua arrived home, so I turned on the smiles and loud, excited voice for his benefit and he responded happily in the way that I knew he would. There was no time to wallow once he was home: he wanted his boots and splints removing, I gave him his medication in a chocolate mousse, he told me that he wanted to watch ‘Robbie’ on DVD and then I got his tea on. On the plus side, I had hugs and kisses from him, but much less endearing was his door slamming and his bashing of the telephone on the  mirror in the hall, both to demand attention. Once he had eaten,he dragged me upstairs and into the bathroom, as he wanted an early bath, so we were both in our PJs by the time my husband got home from work.

Joshua was up and down stairs through the evening but he settled into bed around 9 pm , but he was back downstairs later as he had some seizure activity, as he was still gently fitting by the time he reached us. I took him back to bed and lay next to him to observe his seizures, even though he smacked me at first, I persisted and sang to him in the darkness. I fell asleep next to him, so I got my nap, just  7 hours later than I had planned, and when I awoke, Joshua was snoring next to me. Joshua helpfully takes the focus away from what I am feeling , as he needs such practical care. I was asked yesterday if Joshua would be going to his Granny’s funeral, and I replied quickly that of course he would : he loved his Granny and she adored him, so there is nowhere else that he should be. He is unlikely to conform during either service, but we will be surrounded by friends and family who either know him or who have heard Mum talk about him, so his outbursts  will be excused I am sure and he may even prove to be a useful diversion on the day.

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……

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!”

Welcome another new week

Sunday night is a time for reflection, a time to look to the week ahead and see what it might bring : I know that I have some fun things to look forward to this week : a visit from a friend over from USA, lunch with a colleague, some time in school and my Parent Coffee Morning on Friday. That is what I am expecting but you will know by now that I have a lot of unpredicatbility in my life. Joshua has taught me flexibility and spontaneity, in that his seizures could throw a spanner into any of those plans, with very little notice. Fortunately those who know us well, are prepared for last minute changes and recently, he has had a run of bad Thursdays for some reason.

We try not to be yellow-bellied about life; there was a time when Joshua’s unpredictability meant that I would be reluctant to make any plans, for fear of breaking them. But that felt as though life was passing us by while we were waiting for seizures, now I feel that it is better to make plans and if needs be, change them accordingly. We do not tend to share our plans with Joshua in advance, so he cannot be accused of scuppering them deliberately! Without any real sense of time, Joshua must feel as though everything in his world is spontaneous; he may not have a sense of when the school holidays are coming or when is his one weekend in four for respite coming up, so each morning may well be a surprise for him, as he may not even know if today is going to be a weekend or a school day. I cannot really imagine what that might be like, as the first thing I think upon waking is, ‘right, what day is it? what am I doing today?’ and Joshua will not , as far as I can tell, have those feelings and neither does he have my same control over his own daily plans sadly.

Given that Joshua is not in control of his own destiny, I feel a sense of responsibility to ensure that his days are as enjoyable and full as possible. As a sleepy teenager, he may well prefer to spend his weekends dozing in bed, but we compromised yesterday, and after a morning asleep, we took Daddy out for Father’s Day lunch and then we looked around the Festival of Food & Drink before returning home from our weekend away. He is exposed to plenty of different life experiences and social situations, which I am certain is good and enriching for him. So let’s see what this new week has in store…….