Arsenal of Solutions

When someone I know or care for is upset ,or needs cheering up, I have an arsenal of alternative strategies to employ to try to improve things for them :

  1. At the most basic level, I offer them a hug if they are next to me. That close physical contact makes you feel more connected and brings warmth and some physical strength. It is a powerful gesture. Joshua is a great hugger, he offers them to people that he cares about, particularly when he first sees them. While I am hugging, I am showing that I care and hopefully, some of my positivity will rub off.
  2. My next approach would be to bake for them and produce a cake to try to cheer them up. When a friend hurt herself in an accident, I dropped some shortbread off at her house early the morning after I found out. I met a lady earlier this year who has always jogged or walked up our lane and she told me that her husband had liver cancer and he was refusing to eat. I made him a birthday cake in March and have left some home-baking outside for her to collect when she walks past. Something sweet usually helps most situations I find and I am trying to show that I care, by taking time out to bake them something special. I rarely arrive somewhere without a tin of baked goods. I usually bake for the Mermaids, so that we can share a treat after a sea swim. I enjoyed trying out a new gluten free brownie recipe when I went to see my first best friend in Scotland last week. I love to see the smile that home baking brings to people’s faces. At this time of year, I also have homegrown vegetables to share, so that is a healthier option. I took some ginger cake and some french beans to my ex-boss yesterday and he seemed pleased.
  3. We are fortunate enough to have a holiday cottage and it is so peaceful, set in stunning countryside so I have always found that it is good to restore the soul and often to escape the realities of ‘real life’. I have recently invited friends to stay who are having difficult times in their lives and so they need to get away, and leave their problems behind for a while, for a variety of reasons including a difficult divorce, redundancy, illness and mental health struggles. In these situations, often having a short break to look forward to seems to help. It makes me happy that I can make a friend in need, happy too with something so simple. We are not staying there all of the time, so if we do not wish to go at a particular time, I would rather send someone who will benefit from its restorative powers, than it standing empty.
  4. In Scotland last week, I had a revelation that I have a fourth strategy up my sleeve that I did not realise before : I learnt that Joshua is a tonic too. I could see in front of my eyes that his big smile also had an impact. His presence made people feel good. I wonder if on some level, people see that Joshua still smiles and hugs through all of his difficulties, so that rubs off a bit on them. Or perhaps he simply distracts people for a while from their own issues and worries, but I could see him lift them up before my eyes. His bear hugs are powerful too. So Joshua is another resource that I can add to my list now.

Often it is possible to feel helpless when people that you care about are struggling. But knowing that I have this arsenal of options at my disposal, gives me a range of alternative things to try and I will apply whichever option seems the most appropriate. I am delighted that now I have discovered that Joshua is one of my potential solutions, I have four alternatives to choose from.

The Tiger and Joshua Came to Tea

I am part of a local group for ‘Inspirational Kids’ and occasionally, amongst other events and support that they offer families, they offer discounted theatre tickets. We have seen Shrek, Footloose and Club Tropicana all with this group; every show has been great and we always have great seats near the front of the theatre too. In May, the group organiser offered us the chance to go to see ‘The Tiger Who Came to Tea’ with them. It used to be one of Joshua’s favourite books and he still chimes in with key lines such as ” Daddy’s beer!” and ” they put on their coats and went to a café!” So of course we wanted to go to see it and I invited my sister, niece and best friend to come along with us, but only my sister was free to join us. So back in May I bought three tickets and finally, it came around yesterday.

Joshua and I left home at midday, to drive the hour to get to the theatre and my sister did the same as it is almost exactly halfway between us. Joshua kept asking for food on the way and so I stopped at a KFC drive in and bought him some popcorn chicken to keep him happy and then we continued on our route, as it is easy to eat on the move. We arrived at the theatre at 1.30pm, for a 2pm matinee, but parking was problematic so I called my sister, who had already arrived by using Park & Ride into town. She got Joshua out of the car, much to his excitement, while I found a car park a short walk away. I found them at a café by the river, once I had parked and we had just ten minutes before the show started so it was timed perfectly, as we made our way to the theatre entrance. I showed my tickets on my phone as Joshua negotiated the steps down into the theatre and then he had to shuffle along a row to the centre, being careful not to stand on anyone’s feet. As it was a children’s show, the audience was primarily small children with their parents or grandparents, so their hearts sank as they saw tall Joshua sit in front of them and block their view , despite their booster cushions. Luckily it was not full so they could move along to get a better view.

There were only three actors in the show, plus the tiger : Sophie and her parents. It began slowly with a hello song and I was not sure that Joshua would stay awake, or engaged, for it. But once the story began properly, with recognisable lines from the book, he was mesmerised and watched wide eyed and open-mouthed. He was delighted when the tiger came on stage and the real action began. The show was exactly an hour long, which was perfect for the attention span of toddlers and Joshua! I enjoyed watching Joshua’s expression and listening to the children around us asking their parents of the tiger was real! There was lots of audience participation and there were songs too, so it was an interactive show and we all three loved it. I often feel that Joshua enjoys the first half of shows but that he struggles to have an interval and then sit still for the same amount of time again. So this hour-long show was perfect for him and he really seemed to enjoy it.

We were starving when we got out of the theatre at 3pm, so we crossed the road and entered an Italian restaurant for late lunch/early tea. Joshua and I shared a pizza with chips and then I enjoyed a latte. My sister and I talked and laughed continuously, while Joshua watched the other diners and waiting staff, flashing his bare tummy whenever he could catch somebody’s eye, so he was in his element. We were in that restaurant for a couple of hours, then we walked back to my car and I drove my sister back to the Park & Ride so that she could drive home again. All in all, we shared a very happy afternoon together and I would really recommend the show if it is touring where you are.

My Heart Still Bleeds for Archie

I first wrote a blog about Archie Battersbee at the end of June, when his Mum was pushing for an appeal against the court decision to turn off his life support on the grounds of medical advice. Since then, the family have been fighting an Appeal, out of the media limelight, and yesterday they lost that appeal at a High Court Hearing. I understand that Archie’s father, Paul, collapsed before the High Court hearing, with a suspected heart attack or stroke, presumably brought on by the stress of recent events since they found their son unconscious at home back in April . Despite this serious illness, the hearing went ahead , and was lost, without him. How much more does that family have to take?

I read that there is now a 48 hour delay to ending treatment so that the family can appeal higher, to the European Court of Human Rights. I imagine that they will take up that option, if funds allow, as his mother states that she will never give up on him. They are considering whether or not to appeal to the European Court, but if they do not, Archie’s life support will be withdrawn. A further appeal will give them the ‘luxury’ of some more time together if nothing else.

Reading the news story is heartbreaking as Hollie, his Mum, is clearly driven by hope and love for her son, as you would expect. She has found glimmers of hope, like his slight weight gain and an attempt to breathe himself, to argue her case for giving him longer to recover. The medical profession seem to be in agreement that to end Archie’s life, when they believe him to be brain dead, that this decision is in his ‘best interests’.

We are going through the application process for DOLS assessment ( Deprivation of Liberty) at present, to present to the Court of Protection that all of the restrictions in Joshua’s life are in his best interests. I know it is nothing like Archie’s case, but the use of those same words ‘best interests’ are being used in his case to take control of the decision making. The implication is that Archie’s parents are too emotionally involved to be able to look out for their son’s best interests, so that the doctors need to step in and objectively make those painful decisions for them. Any parents would be likely to wish to continue life support of their precious 12 year old son, but the law enables ‘professionals’ to speak out against them, if it is in the child’s best interests.

When I heard the appeal ruling, I felt bad that I had hardly given Archie much thought over the last month. They were in the depths of despair, preparing an appeal case, while I was happily driving around Scotland with my brain -damaged son, having a great break. If they lose this final appeal, they have nowhere else to go; so if he has not woken up by then, the hospital will remove life support and Archie will die and his parents will have to try to pick up the pieces of their shattered lives, without him in it. The court process will be giving his Mum a focus, to distract her from the agony of feeling helpless sitting by his hospital bed, but once that focus and her son are both gone, if it comes to that, I am concerned for how she will cope, and live the rest of her life, she will need to channel all that ‘fight’ into something constructive.

I was telling my cousin and his wife last week, as they are having battles with her mother’s care home, that when you have a lifetime of fighting for your child’s rights, for being their voice, that you become toughened and that you gain a reputation for being feisty at school or with health professionals. I was the one who would prepare for meetings and arrive with a list of points that I wanted to cover. They are having to do the same for her elderly mother who has dementia, she is being her Mum’s voice and is being misunderstood as being overbearing, when she is only trying to ensure that her mother receives the care that she deserves. Archie’s Mum will have developed new skills for fighting and managing the media and she will have become much more knowledgeable about the law than she ever was before Archie’s accident. I predict that she will become an active campaigner once this is over, as she will have new skills and a desire for change, that might help her recover from the loss of her son.

So as I go about my day, with my brain-damaged son, I will keep Archie and his determined mother in my thoughts and prayers.

Festival Fun

Sometimes change is dramatic and sudden and you cannot fail to notice it. But other times it is more gradual and subtle and it can be more difficult to detect. When you are with Joshua everyday, it can be harder to recognise change and improvement and it might take someone who sees him less often to point out changes in behaviour. On many occasions Joshua’s preferences are taken into account in our family, how Joshua will react is a major factor in much of our decision making. But one area when is feelings are disregarded lies in our annual attendance of agricultual shows, which we both enjoy and Joshua is indifferent to, in the main.

Yesterday we attended a Food & Drink Festival, I had booked us tickets for a friend’s birthday and all 4 of us drove the hour to attend. We had arranged to pick her up at 10.30 and for once, we were on time too. She asked if Joshua had complained at getting up ‘early’ to be ready and I reflected and then replied that he has got better at that, since attending Daycare. On those days he has to start getting up at 8.30, so that we can be out of the door an hour later. On daycare days, if he is sleepy and reluctant to get out of bed, I simply need to tell him that he is going in the ‘car’ to ‘Play’ and he leaps out of bed with a grin and starts waving goodbye to Bruce Springsteen on the DVD player. Last week when we stayed at the hotel, he understood that he had to get up around 8.00/8.30 if he wanted any breakfast in the dining room. He went back to sleep after breakfast both days, but he was not challenging to get out of bed in the first place.

So to have breakfast at 9.30 then get dressed for the festival yesterday, was no real hardship. We were on the road for 10.30 as planned and parked up in the busy field car park an hour later. We had brought Joshua’s off-road wheelchair which is comfortable for him to sit in and moves easily on the grass, so my husband assembled that and we set off to the show. There were a lot of people there but it was spread over a large area, across three different fields, so it did not feel overcrowded. We sat on the ground and enjoyed a cup of tea, while we got our bearings. There were lots of food and craft stalls there and after looking around, we settled at a large gazebo where a singer was playing his guitar, so Joshua was content to sit and listen while we took it in turns to look around that field. There were lots of tempting stalls at lunchtime and we brought our naan bread cheese toasties back to the gazebo, and next guitarist, to enjoy and Joshua enjoyed some chips, until he ate so many that the light cardboard tray blew away.

Then we moved along into the next two fields to explore, more cups of tea of course, and then at 2.45 we joined the queue to see the chef James Martin’s cookery demonstration in a big top. His demo was excellent – he was a great, natural chef and a funny entertainer too. Joshua had no interest in this activity, but instead of creating a fuss and having to be taken outside – which is what I predicted, based on previous behaviour as this type of event – he lay his head on his knees, and caught up on his sleep, allowing us all to enjoy the show in peace. Helpfully he woke up at the end, maybe disturbed by the applause, but then he was happy enough to come outside again with us.

It was our first festival/show of the summer, there are several more to follow next month. This one worked well as it was the right combination of music and food for him to partake too, there is less of interest to him at the agricultural shows typically. The weather forecast had been wet in the afternoon too, but it was much warmer and drier than predicted, which helped. A soggy wind-swept Joshua would not have been as tolerant either. I think that after being cooped up at home over lockdown, Joshua is more willing to go out and about these days and so, tempting him out of bed with the promise of ‘car’ is now a great motivator. We all enjoyed the day out and so I am ready for the next agricultural show the weekend after next , when we are away on holiday.

Light & Shade

There are a few benefits to having a son with special needs, it is not all doom and gloom, as I try to illustrate in my blog. The key positives that I recognise are:

  • Joshua is incredibly loving; I must get more than 30 hugs a day. His face lights up when he sees me and I am treated to regular bear hug squeezes. What other 21 year old lad would be so affectionate to his mother and in public too?
  • For the majority of the time, Joshua is a happy soul who does not worry about anything. He takes life in his stride and adapts so well to new situations. He loved our recent roadtrip, you would think that we stayed in hotels all of the time, the way he adjusted to living in one room and going downstairs to a restaurant for breakfast. He has given us no concerns over how well he has settled into Daycare, he has fully embraced the new situation and he clearly loves going there.
  • We do not have to worry about Joshua leaving home, that gut-wrenching time when your child heads off to make their own way in life, maybe off to university or start a new job working away. I will always be able to protect my son, as he will never be far away from me and we will be in control of his life choices, making them in his best interests of course. I do not have to worry about his getting in with the wrong crowd or getting into trouble with alcohol or drugs, worries which must occupy most parents’ minds.
  • We celebrate Joshua’s successes everyday, he makes me so proud that he has defied his diagnosis and grown into a handsome, sociable young man. When he was born we were warned that he may not walk, talk, see or hear. Joshua can do all of those things, to a certain level, but I love his cheeky , bright personality that makes me proud when I take him out. His smile lights up a room and he makes people happy. Yesterday in a café, an elderly lady stroked his hair saying that she loved his curls. He did not flinch or object, he just beamed at her and she smiled back. I love how he relates to people

There are however, definite downsides that I should also address :

  • Joshua requires care 24/7 ; he needs someone to dress him, feed him, change him and support him when he walks. The unpredictability of his seizures means that you have to watch him all of the time, looking out for telltale signs that seizures might be on their way. His care continues through the night; last night for instance he went straight to bed at 9.30pm when we got in from a lovely pub meal. I went to bed just after 11. At 2am I heard him moving about downstairs and he let the dogs out of the kitchen so they were running around the house, delighted to be released. I put everyone back where they belonged and tried to get back to sleep. At 4am I heard him on the landing again, so this time I snuggled in next to him in his bed, but at 5.15 he was climbing out of bed again. I offered him some Weetabix and put him back in his bed, when I brought it up to him, he was already fast asleep. That kind of broken sleep is not unusual.
  • His epilepsy spoils plans and wipes out entire days. He cannot control it and his seizures are better managed, and less frequent, than they have been in the past. But even so, it hangs like a black cloud over us, sometimes threatening but passing by and other times, taking the joy and energy out of our son, so that he is completely spent and lifeless. It is a cruel condition and it is one that we have accepted that we will be living with for the rest of his life.
  • Joshua has been deprived of a ‘normal’ life : he will never be fully independent, get a job, study or leave home. He is very attracted to young ladies, trying very hard to capture their attention, but he does not have the capacity for a relationship, so will never marry and have children of his own. The future that we might have envisaged for him – like the one we both had when we left home, went to University, got jobs, got married and had a son – will never be his reality.

But the real blessing is that Joshua seems content with his lot in life, if he is frustrated by his limitations, he really does not let it show. We had dreams for Joshua’s future but I doubt that he did, so he is not disappointed. Joshua’s concern is with the here and now : what am I doing and what will I be eating? seem to be his main priorities. Joshua is nowadays taking more control over what he is doing and eating, by making suggestions. He sat beautifully last night for 2.5 hours in the local pub and ate up almost all of his scampi and chip supper, but at 9pm he made his feelings very clear by repeating “Bed!” endlessly until we heeded his request, paid the bill and drove him home.

Anti-social Media

I belong to a few Facebook groups for parents of special needs ‘children’ and yesterday I reached out to a Mum in one of those groups who was feeling desperate : she posted that she was angry and sad and wanted advice from the group as to how to feel better. She was being confronted , on a daily basis, with Facebook posts about children’s last day of primary school, offspring’s end of school proms and exam successes and she could not cope. Her son had not accessed school for months due to anxiety and she was having to manage his suicidal thoughts. She was finding the injustice in front of her, too much to bear. It broke my heart to read her ‘vent’ as she called it, in the safe place of our parent group and so I responded as follows:

“Sending love and hugs. Life is so unfair for our kids but he has got you by his side, fighting his corner. We should not have to fight like we do, but that is our reality. Maybe stay off social media for a while and let parents show off about their brilliant children’s achievements, you don’t need your nose rubbing in it. They are so wrapped up in their own family sometimes that they can forget how it makes us feel”

She replied to me ” I think this is very true what you say, Other people have no idea. Thank you for your kindness” I wanted to make Facebook a supportive place for her on that day, rather than somewhere which made her feel envy, bitterness, sadness and resentment. As ever the parents in the group all reached out to her, adding their own thoughts and experience, and hopefully she felt better by the end of the day.

It touched a nerve with me however and I thought about the power of social media. I love Facebook as a means of staying in touch and keeping up to date with what my friends and family are up to. I use it as a vehicle to share this blog, to share what we are up to or what I am thinking each morning. However, if you are not in the right frame of mind, it can be a very negative place. As this Mum found, at this time of year in particular, Facebook is flooded with children’s achievements : School Prom photographs of children becoming adults, Sports day images of competitive children winning races, Graduation photographs of young adults achieving their degrees and starting careers and last day of Primary school photographs as children progress onto high school for example. I delight in seeing these successful images and will always make a comment or offer my congratulations. But every image is tinged with sadness too, they all serve as a reminder of what Joshua has not, and will never, achieve. They remind me of the life that Joshua should have had but that has been deprived of him. I never get angry about this loss, but it does make me sad at some level.

Joshua is much loved and has a rich and fulfilling life, which is probably why I do not feel anger or resentment. If Joshua was house-bound with anxiety or having suicidal thoughts, as was the case in this lady’s family, then I may well feel differently. So for me, it is with a passing sigh that I browse through the numerous end of term posts and I wistfully ponder, what might have been. But that is because I am in a happy place and content at present, when I am feeling low my attitude is totally different. In fact, when my depression is at its lowest, I do not turn on my laptop and rarely browse through Facebook, as it is just too painful. When you are already feeling low, it serves only as a reminder of how wonderful everyone else’s life is compared to your own. When I am low, I cannot bear to see everyone else’s holiday photos or to read about their new grandchild or new job, as each one is a stark reminder. So social media, for me, at that time, is out of bounds as it just makes my low mood feel even lower.

People only post what they want you to see about their lives on social media, it is not a true reflection of everything that is going on in their lives. I often hear that ‘Joshua is always so happy and smiley’; well of course I only post the cheerful images. I am selective and when he has his cross ‘Ogre’ face, as we call it, I neither photograph it nor post it, but let me assure you, it does happen, not often, but it does happen. Behind the smiles and success that is shared on social media, there will be all sorts of dramas going on that are not publicised : mental health issues, family rows, illness and financial worries all stay in the background as far as social media is concerned, it is a very filtered, perfect view of life. Nobody has the perfect lives that are portrayed on social media, these are simply snap shots of happy times that should be celebrated, but also put into context.

I hope that my advice and support made the upset Mum feel a little better, and if nothing else, that she felt less alone in her anger and disappointment. That is after all the real purpose of these support groups, to bond over a shared experience and be able to lift each other up.

Our Scottish Roadtrip Part 4

We had a truly wonderful, sociable final day in Scotland and Joshua continued to revel in the adventure. We got up around 8.30 and I sent a message to my best friend to invite her for breakfast in our hotel, and she came with her Mum and we delighted in their company. We chatted easily as we enjoyed the breakfast buffet and some more scrambled eggs. Then Joshua and I climbed the contentious stairs for the final time, so that I could pack up our belongings. While I was packing, Joshua curled back up in bed for a post breakfast nap, so I was able to load the car, take some photographs of the hotel and pay the bill while he was safely in the land of Nod. As I settled the account, I reminded the hotel manager that their booking system had failed me as we did not get the ground floor room that I booked. He explained that the person who took the telephone booking did not specify in any notes that we needed a ground floor room so when it was requested by another guest, they thought we would appreciate an upgraded first floor room. I told him that we were very lucky that Joshua could manage the stairs, even though it was a slow struggle. If he had been wheelchair bound, we would have to have gone elsewhere. Anyway, as it was Joshua got better at coming down the stairs over the course of our stay.

Eventually Sleeping Beauty stirred, so I brushed his teeth and put his boots back on before he could nod off again, assuring him that he could sleep in the car. We drove to my friend’s Mum’s house to say our goodbyes and lots of hugs were exchanged. We then drove for around an hour to meet my Aunt for lunch, as she lives and works in Edinburgh. She had chosen a lovely light café and was waiting for us in a booth , so I slid Joshua in opposite her. He loved watching all the young people come and go , while we exchanged news and enjoyed the most delicious food. Joshua ate almost all of his chicken goujons and fries – he has eaten so much this holiday! More hugs and goodbyes, and we set off another hour to the pretty town in the Borders where my cousin lives. We were early so we explored the town, bought postcards and I wrote them in a pretty walled garden. We went to my cousin’s beautiful old house around 5pm,and as expected he and his wife were out, but we were beautifully entertained by their son, who I have not seen since he was a small boy. Joshua was exhausted by the traveling and eating, so he sought out a very comfortable settee and had a snooze in their, while we chatted and caught up on family news while sitting in the garden, drinking tea. He was great company.

My cousin and his wife were fall of apologies when they returned around 6pm and she kindly got straight on with preparing our evening meal, which was delicious. We ate quiche and salad in the garden, followed by a tasty cake that she had made using my recipe. We had lots of family news to exchange, so the time passed too quickly. But conscious that I had a long drive ahead, I left around 8.30 – but had to return as I had left my mobile phone charging in their kitchen – so I really left nearer 9pm! It was a stunning drive through the beautiful Borders, us being virtually the only car on the long straight roads, so I was astounded by the scenery and vowed to return in the caravan with my husband too. It was dark by the time we reached Newcastle and it was motorway most of the way back to our holiday cottage, which we had left on Tuesday morning. We reached our final destination just before midnight and Joshua slid gratefully in to his bed.

So over 500 miles later, we returned to where we began. It has been a brilliant roadtrip : we have spent quality time with friends and family, who we have not seen for too long. Joshua has excelled himself and seemed to enjoy the experience too, even the long drive last night did not phase him. My ex-neighbour summed it up beautifully , saying: ” I have known about Joshua all of his life and we love him, but we have been able to get to know the person that he is” . So it sounds as though it was not only a treat for us, but for those we visited too. Now we just have to adjust to not eating all day!

Our Scottish Roadtrip Part 3

Joshua behaved impeccably yesterday and his good behaviour began when he woke up at 9am. He asked for ‘Bix’ as he woke and I explained that as we were in a hotel, he had to get dressed first and go downstairs for his breakfast. He seemed to understand and he behaved as though he had always stayed in a hotel, as we descended the contentious stairs to the restaurant. There my best friend’s friend was already seated at a table, and she kindly invited us to join her. We must have been at breakfast over an hour as we chatted, while we enjoyed the delights from the buffet and a cooked breakfast too. I learnt about her life and I told her more about mine and inevitably I shed some tears, but it was great to have the opportunity to chat. We shared stories of how we met our mutual friend. Joshua survived the ‘grown ups talking’ by firing out random demands for more food like ‘toast’ and ‘banana’, so he ate well too. After breakfast I saw a message from my best friend telling me that her younger sister was coming over to see us, with her daughter, so we quickly brushed our teeth and walked the 4 minutes over to their house.

We received another warm welcome and almost immediately Joshua was offered crisps and chocolate. I laughed and replied that he had just had a large breakfast but 5 minutes later, he was requesting crisps! I teased my friend’s Mum, saying that she was a real ‘feeder’ and made me look like an amateur. It was wonderful to see my friend’s sister again and we shared a big hug and lots of chatter. It felt like old times again even though she now has two daughters in their 20s. We had lunch and then I asked if we could walk the familiar walk to school, so that I could see how it had changed. I pushed Joshua in his wheelchair, my friend followed with her Mum and her friend and we slowly walked the half mile to my old primary school, where we took photographs outside the door. On the way I reminisced to see where I had my piano lessons, the old police station, the old doctors surgery and the crossing where we joked with the lollypop man. It was all fresh in my memory even though it was 50 years ago and it had all changed, except the school building. The fields where we played opposite our old house are now covered in smart new houses.

Joshua and I stopped off at our hotel on the way back for a nap and we both dozed on our bed for around an hour and felt refreshed afterwards. My ex-neighbour came to collect us around 6pm and we walked back round to her house, where her son was waiting to meet us. That really was like stepping back in time as he is his late-father’s double, both in looks and in his teasing nature. He immediately greeted Joshua and when he flashed his tummy back at Joshua, he looked truly surprised and delighted. They kindly collected a delicious Indian takeaway for our evening meal and once again, we were very well fed. We had some photographs taken in the front garden and after 9pm, Joshua was asking for his bed. So we were walked back to our hotel. We have been made so welcome here and so it has been such a great stay that has flown by. We will head onto our next adventure after breakfast today and see what the day brings.

Our Scottish Roadtrip Part 2

I woke at my usual time so as I could not go for my usual walk, I found myself cutting the grass at 7.30 am and it was already warm then. Joshua came downstairs for his Weetabix at 5.40 but after he had eaten it, he retired back to his bed. I never like to wake him if he seems to need his sleep, I prefer him to wake naturally, which he did at 10am, by which time I had the car packed and I was ready to set off. So I dressed him quickly, leaving his socks, splints and boots off to keep him cooler in the car. We were away by 10.20 and had the most stunning driving through the Yorkshire dales and then Cumbria to get to the M6 motorway, which was wonderfully empty and scenic too.

I waited until we crossed the border into Scotland before we stopped for lunch at some services by a lake and we both stretched our legs and enjoyed some lunch before getting back into the hot car. I had another short stop later to close my eyes for ten minutes, not even getting out of the car. I started to get excited as I saw road signs with familiar town names on them, as it meant we were getting closer to the town where I grew up and we arrived at the hotel just before 3pm. I parked in the disabled bay right outside the entrance and we went inside, with me juggling Joshua in one hand and our suitcase in the other.

A friendly receptionist greeted us and I explained that I had booked a ground floor accessible room for two nights and her face dropped as she stared at the computer. She explained that our room was on the first floor, not the ground floor as I had booked, and she broke the news that there was no lift either. I queried it of course, as I had made the booking on the telephone myself about 6 weeks earlier, this was not a last minute trip. I waited to see if she had a solution, but she , though very apologetic, did not have an alternative plan. So I agreed that we would look at the staircase and room to see if it would be feasible. It is an old house, so the staircase was wide and had a banister on his left side going up, so he managed it, slowly but it was possible – luckily, as if he was wheelchair bound, we could not have stayed! She had my suitcase brought up for us and offered us breakfast in our room, to avoid unnecessary trips downstairs to the dining room. But I assured her that he would want the sociable breakfast experience, not to be cooped upstairs.

We changed out of our travelling clothes and freshened up, then tackled the stairs, which do not have a banister on his good-side for getting down so he relied on the dado rail and my hands, and we managed it together. I collected the wheelchair from the car and we walked the two minutes down the road to my ex-neighbour’s house, where she was sitting reading in the garden watching out for us! There was union jack bunting and welcome signs on the door to welcome us to her home and we were both delighted to get inside the lounge that I virtually lived in when I was a child. It had hardly changed and felt very familiar as there was so many family photographs on the walls, from the times that I recall as well as more recent pictures of her granddaughters.

I brought out the gluten free baking that I had made for my best friend ad we enjoyed cups of tea and catching up. Her work friend from South Africa, who now lives in Ireland, arrived too and she is another lovely lady, so I enjoyed getting to know her too. It had been arranged that I could look around our old house, which we had left in 1978 and I was keen to see it again. Everything was smaller than I remembered : the garden was not as huge as I recalled, the big square kitchen that I loved was a good size but not particularly large. Memories of family Christmases in the dining room came flooding back to me. It was , and still is, a wonderful family home. The paddock opposite where we used to play in the tree roots by the river, now has a house built on it and the fields where I used to take Shandy for a walk, is now a housing estate too. My neighbour has lived in the same house for 51 years now so she will be well known in the town – her granddaughter joked that she was well known by half of Scotland.

We were treated to a delicious buffet style tea in what used to be the playroom, with more photographs to absorb. More chat and memories shared and Joshua and I left around 9pm to walk back to the hotel, where he had a quick bath before bed. We are sharing a double but he spread out before I got in and so I had to squeeze around him. After I spoke to my husband to bring him up-to-date and to check up on how all the dogs were doing without me, I slid into bed around 10.30pm, ready for bed too. It had been a long, nostalgic and emotional day but a very happy one and I am pleased to be here.

Our Scottish Roadtrip Part 1

One of the things that I have learned to become since having Joshua, is flexible and adaptable. I tend to avoid making too many plans, as inevitably they have to change for a variety of reasons and not all of them down to Joshua. Most recently this has been the case for our trip to Scotland. I felt very pleased with myself that about a month ago, I booked bargain rail tickets and a Disabled Railcard. First of all the journey looked in danger due to threatened rail strike action, but they avoided our travel dates. Secondly, when I lost my mobile phone on the beach, I lost Joshua’s online railcard and rail tickets when they did not re-appear on my new mobile when I downloaded the apps. But I made a few calls and managed to retrieve both. Finally at the weekend, extreme weather forecasts for our Tuesday travel day and advice only to make essential rail journeys, meant that I changed my plans and decided to drive instead of taking the train. We can go at our own pace, will have the benefit of air conditioning and it meant that I did not have to travel lightly any more. With Covid cases on the rise again too, it will be better to avoid public transport for now too. The only downside is that my bargain tickets were non-refundable, but I am still convinced that this is the right way to go now.

So Joshua went to daycare yesterday, while I packed the car with far too many clothes – we won’t wear half of them! -, our new lightweight wheelchair (bought specially for use on the train!) and some home-baking for my friends. We all had tea together and I had hoped that if we set off at 7pm, the heat would have started to fade, but I drove through towns that were still enduring 32 degrees. We were very comfortable in our air conditioned car and Joshua ate most of my snacks for the main journey already! He cleverly noticed the contents of the carrier bag at his feet and kept pointing at it until I relented and opened a jumbo bag of hula hoops for us to share. I tucked the bag down beside his hip and he beamed each time he reached in himself and pulled out an enormous hula hoop. He seemed to be super-happy.

After just over two hours we arrived at our holiday cottage, where we were stopping overnight to break up the journey, so it was somewhere very familiar to him. As we drove up the village at 9pm, he said ‘Thank you’ to me. I unloaded the car and then him, throwing open all of the windows, although to be fair the thick stone walls meant that it felt much cooler than outside. As soon as we were both indoors, Joshua asked for ‘Giraffe’ so we went to his bedroom and read ‘Giraffes Can’t Dance’ together. He never asks for ‘Giant’ here , he knows that is a story for home and likewise, he saves his Gerald requests for here. He had Weetabix for supper and then tucked up in bed, not getting out again until 4.30 am, so he must have been tired out. I watched some TV, called my husband then was tucked up in my bed by 11, ready for the next leg of driving today.

I was tempted to get up when Joshua woke and came onto the landing at 4.30am, but I told myself that I had another 3.5 hour drive ahead and I needed to be well rested, so I managed another hour of sleep. I cannot go for my usual walk this morning as I cannot leave Joshua alone, so I plan to cut the grass for my morning exercise once it gets to after 7. It feels very odd to be here without any dogs at all, so a solo walk would seem like sacrilege anyway. But I was still able to capture the most beautiful sun rising over the village, by standing on the garden bench. It promises to be another hot day but at least we are moving away from the high temperatures as we head north of the border. Wish us Luck.