The Here & Now

Joshua missed his last weekend of Respite as it fell on the first weekend of our family holiday. I turned it down rather than delaying the start of our holiday and I asked, without any real expectation, if he could have any other days and nights as an alternative. To my surprise, this did not seem to be such a hurdle, and they offered us two nights this week. So I will be dropping Joshua off there this afternoon and picking him up again on Friday morning. I am hoping that he is as excited as he has been previously to stay there, even though he has not stayed for six weeks now. So his bag is packed and I have told him several times where he is going and when I will see him again, but I am not sure that he will really understand until we pull up outside the familiar building.

Joshua certainly understands what is meant by ‘bath’ and ‘bed’ as he repeats those words and even requests them when he is tired. But we were asked on the last day of our holiday if Joshua was upset to be going home? I had to explain that I doubted that Joshua realised that we were homeward bound and if he did, Joshua would not be disappointed by that change as he is a real home-bird. While he can grasp nouns like bed, I do not think that he feels emotions such as ‘being upset’ about a future event, which is a benefit, as is not feeling anxiety about something that is about to happen. But likewise, Joshua will not experience excitement about something that is anticpated, such as an outing or his birthday, which is disappointing as , for me, often the build up is as rewarding as the event itself.

On balance, perhaps living in the ‘here and now’ as Joshua does, rather than wasting time pondering the past or speculating about the future, is the sensible way to be, maybe he has the right idea after all.

Nose to the grindstone

I did not really feel ready to go back to work yesterday as I felt in need of some time at home to acclimatise. We always like to squeeze the last moments out of our holiday, by not leaving until Sunday afternoon, but the downside of that is the rushed feeling of just a few hours turnaround. I know that the more sensible approach is to leave on Saturday or at least on sunday morning, but we have never been sensible where holidays are concerned as we have always been ruled by our hearts not our heads. But as a result, going to work yesterday was a struggle. Having had over two weeks with Joshua, it felt odd kissing my sleeping teenager goodbye in the morning and then he enjoyed a day on the beach with Yorkshire Grandma. I saw him awake when I got home, while he was eating his tea, but after that he snuggled down to go to sleep in his armchair, so I complained about only seeing his eyes open for around 20 minutes all day.

We live in a seaside town so I seemed to be surrounded by holiday-makers, which did not help my feeling of injustice and feeling sorry for myself. I queued home in the car at lunchtime, due to congestion of tourists, so I decided to cycle back to the office in the sunshine – partly to bypass the queues and to be healthier, but also in an attempt to re-capture some holiday spirit and it worked well. So much so that I may cycle in today too; I will not win any medals for speed but it is a fun means of transport and my 2-3 mile commute is just the perfect distance for me. But I did warn my colleagues at 3pm that I was now accustomed to an afternoon siesta and so I may have nodded off at my desk, but I managed to keep active to prevent that from happening, even though my eyes wanted to close briefly for a power-nap.

I was relieved when it was time to cycle back home and I heard Yorkshire Grandma’s tales of the day and of the two weeks while we have been away.I know that today will get easier and soon I will be back in the swing of my routine. This is simply the price that I have to pay for having had a good holiday. And lets face it, we have a long Bank Holiday weekend coming up just around the corner…..

Back home

We are very fortunate that Joshua is such a patient traveller, he is not demanding at all. We loaded him into the car at 12.30, as he obligingly slept through the tidying and packing up. He had some brief entertainment on the 45 minute ferry journey, which was stunning as the sea and sky were blue and we sat on the top deck watching the world go by. But once he was back in the car, he did not get out again until we got home at just before 8pm. He dozed, enjoyed music, ate snacks and looked out of the window, but never complained once. As we got 20 minutes from home, he started to bounce in his seat; he clearly knew where he was and he was happy about it. Joshua has always been a real home-boy. This homecoming was no exception, he was delighted to be back home and he was soon installed in his armchair, enjoying the much missed ‘Show’, which was not interrupted by Olympics coverage as Daddy has his own lounge and television for sport!

Surprisingly, as he had not exerted himself all day, Joshua was ready for bed after he had eaten tea. As I return to work today, Yorkshire Grandma will be taking care of him for the next two days, which I am sure they will both enjoy. She says that it feels as though she has not seen him forever, so that will be a fun reunion I am sure; he will enjoy the change of company as he has been limited to his parents for the last two weeks!

We were welcomed home by the pets who we had left behind, in Yorkshire Grandma’s care, and they instantly recognised that Jack was unwell and they inspected him from head to toe. Now that we have brought Jack home, it is sad decision time.He is so weak now that he staggers around like a new foal, struggling to get his balance. He has defied the vet’s prediction and clung on until the end of the holiday, but he cannot go on much longer now, so we need to be brave and do the right thing .

Now the end is near…..

Well it is time to pack up and clean up and head home  and back to work in the morning. We have been truly spoilt with amazing weather for our full stay and the sun is out again this morning. We enjoyed another afternoon out on the beach yesterday, which started with lunch in a beach bar: Joshua was in his element with live music, a sea view, a glass of orange juice and some fish and chips, what more could anyone want? We all dozed off our lunch on a rug on the beach but were sadly disturbed by Joshua having his third seizure of the holiday, so thereafter he lay dazed on the rug but would not close his staring eyes. My husband and I took our last swim in the sea , leaving Max the dog in charge of Joshua on the empty beach.

Joshua had some tea back at the house and then we headed out again to watch the final performance of the local band that we follow, they were not performing until 9pm. It was a totally different atmosphere last night to the previous week as the tourists and visitors had mostly gone home and so it was a smaller audience, of mainly locals and the staff who had been manning the food and drink stalls for the past week. Joshua enjoyed most of the act, only laying his head on his knees, once or twice but he was jigging in his wheelchair for the grand finale. A lady sat next to me and asked when he would be dancing, as she had seen him the previous year and she was disappointed when I explained that he was rather wobbily still from his earlier seizure. But his enjoyment of the music had clearly made an impression on her.

We stayed chatting after the show and then enjoyed the freedom of the emptier streets with the wheelchair and it was easier to leave, knowing that the entertainment was over too. We will be taking a very weak Jack home with us too, as he has defied the vet’s prediction and has kept going. He will not be galloping across the sand for his final beach walk, but he will potter in the garden before we set off, saying his final goodbye to a happy holiday home.

We are very fortunate that Joshua is a patient traveller, as we have a six hour minimum journey ahead , but the long drive has truly been worth it. Until next time, my happy place.

Freedom of will

We had a lovely lazy afternoon on the beach yesterday, back on the loungers that Joshua prefers to our rug! We soaked up the sun, dozed, had another swim in the sea and watched the people around us. I cannot remember a day when we spent so long on the beach, previously Joshua has been restless to move on but he dozed more than any of us. So he should have been full of beans later, as he was well rested. But when we got home, he curled up on the settee for another nap after his tea. He was very reluctant to head out again, when I explained to him that we were going to watch the firework display.

But he was out-voted and so I re-dressed him in warmer clothes, and we headed out at 7.30pm to drive to the firework display. The town was heaving and we struggled to find somewhere to park, such is the attraction. We walked down to te seafront where the display was taking place, I let my husband push the wheelchair through the crowds as I am not assertive enough in a crowded area. By this time Joshua had perked up and was enjoying the buzz. He watched the first five minutes of the firework display, but then he had had enough and rested his head on his knees. We try to include Joshua in as many rich experiences as possible but as they say, you can lead a horse to water, but cannot make it drink, as we cold not make Joshua enjoy the display.

I would have preferred Joshua to enjoy the entertainment, but it does not bother me when Joshua nods off with his heads on his knees. But I learnt yesterday that my husband feels embarrassed by that: He thinks that  we will be judged as bad parents, dragging that poor disabled boy out against his will! That has never crossed my mind and reminds me how differently we see the world. I do not worry too much about what strangers think of our family, but I have always been pleased that we take Joshua out and about and expose him to so many different sights and smells. I feel that he is luckier than most and if he chooses to nod off, while being entertained, then that is his choice. He was, I note, not so exhausted that he could not raise his head and jig in his wheelchair to the live band who were performing after the fireworks. So it is simply Joshua exercising his free will by opting out and I applaud that, it would not, after all, be normal for a 15 year old to share in all of his parents’ choice of activities.

Horsing around

As our holiday nears its close, thoughts of work and home are filtering into my dreams as my mind clearly gets drawn back to the real world. But the blue sky out of the dining room window reminds me that we still have two more full days of fun in the sun to enjoy. Tonight we will head back to the carnival town where they end the week with a firework display and another performance by the band we like, which will be fun if the crowds are not too crazy. I find pushing a wheelchair through crowded streets pretty claustrophobic as nobody looks where they are going and they are forever bumping into Joshua. At first, I apologise if I ram his foot plates into their shins, but after  a few bumps, I seek pleasure in getting my revenge on careless pedestrians. It is a real insight into how oblivious most of the general public are to disability, to push a heavy wheelchair through a crowd.

Last night, we were there watching a band , enjoying the music, when I saw Joshua stick his large boot out and trip up a drunk young man, who was mortified. He stumbled then apologised to me as his carer and I looked down at Joshua, so then he grabbed Joshua’s hand and apologised there too. Little did he know that Joshua had tripped him up deliberately, so I guess he gets pleasure in his revenge too, just like his mum. It is a good game sticking his leg out like a horse jump and watching others fall over it, and it appeals to Joshua’s slap stick sense of humour I think and keeps him entertained.

Joshus is still amused by other people hurting themselves and by human noises such as burping and sneezing, he is shocked by the noise, then giggles and then demands a repeat performance, so his sense of humour is in keeping with his toddler-level  cognitive development. He enjoys his fellow students being naughty and being told off in class too, that is hilarious.There is plenty of exaggerated slapstick humour in his classroom and Joshua joins in. But I don’t mind what he finds funny, I just love to hear him laugh. He has a deep, uncontrollable giggle which is priceless.

A Day out together

I am delighted to report that our dog, Jack, who was not expected to survive on Monday night, is still with us and if anything, is getting more mobile. We had discussed our plans for leaving him at home while we went out for lunch then coming back to check on him, but he had his own ideas. When I opened the car boot, he tried to jump in, he was adamant that he wanted to come too. So we made him comfortable and he got his way, talk about resilience, he even enjoyed a short walk after lunch too. He seems determined to make the most of what will be his final holiday.

We  headed into a town with a week long festival, where we browsed through the crowded streets enjoying the stalls and inpromptu music. We settled in a bar with an external stage, managing to get seats right at the front and we waited for the local band that all three of us enjoy listening to. When they began to sing, Joshua jigged in his wheelchair and waved his arm around in delight. But by their penultimate song, he could not hold back any more and he gestured to get out of his chair. Wild horses would not keep him away from the front of the  stage and the loud speakers, so we danced to their finale. The band know Joshua and have watched him grow over the years that we have followed them and so they do not seem to mind this groupie. In fact, my phone this morning has shown me a video of us both dancing to exactly the same song exactly three years ago today, with both of us looking younger. His evident enjoyment of the music, makes others smile and one lady , a stranger, came up to us while we were dancing and grabbed one of each of our hands and gave them a squeeze, but said nothing.

Joshua has always loved music, he feels it I am sure and so I am happy to let him express that enjoyment and to share it with others.