From Outside In

For the second Sunday running, I have felt that my weekend was cut short by work commitments and I have had to leave my boys to fend for themselves during the afternoon. Even though I did not need to set off until around 4 pm, I found that it played on my mind all day, holding me back somehow. We all three of us took the dogs out for a walk in the park around 3 pm and enjoyed some fresh air and sliding around in the mud, created by all of the recent rain. Joshua was reluctant at first, he is not as keen on the outdoors as he once was, but he enjoyed throwing a plastic ring for the dogs to chase, so everyone was happy.

As Joshua has grown older, and possibly his circulation has deteriorated, he has been less enthusiastic to go outside, despite being wrapped up warm. He now seems to feel as though a walk on the beach or in the park or even a shopping trip, is only a means to get to a cafe, to get outdoors and sit down again! When school take him to an allotment, I have seen photographs of him sheltering in the shed, laughing. There are daycare options that involve working outdoors in either a farm caring for animals or at a nursery, working with plants, but neither would interest or suit our son. He likes his comforts : to be warm and sitting down mostly.

Joshua’s circulation is such that his fingers and feet are often icy cold – his finger nails can turn blue –  and when he reaches that point, no amount of central heating will warm him up, only a hot bath will do the trick. He has got into a routine that once he has had his evening meal, he expects a bath. If we try to delay it until later in the evening, he simply goes upstairs and runs the taps himself – with no plug in – but it is a pretty clear communication of what he wants. So he can often be clean and in his pyjamas by around 6 pm. But then, he is not planning on going out again and this is a good way of guaranteeing it! I too, if I have had a long or tough day, will like to change into my pyjamas once I get home, as it is very comforting attire, so possibly Joshua feels the same.

I find that clothes can make you feel certain things, they set the tone. I tend to wear bright colours if I need my mood to be lifted for more brightness, pyjamas are cosy and relaxing. Today, where I need a confidence boost at work, I am dressed more smartly than usual, to give off confident vibes in a presentation situation, it is called ‘power dressing’. Our clothes can say a lot about how we feel or wish to be seen : tomorrow Joshua is invited to wear off socks to school, to celebrate difference. I will choose his socks but I am really not sure that Joshua will even notice or care, he seems to have self confidence, whatever he is wearing, which is how it should be.

Cafe Culture

It is the simple things that make Joshua happy at a weekend and yesterday, we made him happy. First of all we all three went to Tesco and he behaved really well : he pushed the trolley most the way around and he did not try to run away at all. he sat beautifully while I unloaded the trolley on to the conveyor and then almost until I had finished packing my bags. He waved goodbye to the young female sales assistant, but she missed it so I asked him to wave again when she was looking, and instead he gave her a shy, sideways glance that melted my heart, but she missed it.

He had definitely earned himself a treat so we went from there to a local cafe for an early lunch and we sat down in a booth. He was very excited to be there, grinning at all the other customers. He perched on the edge of the booth,  so I had to ask him to ‘hooph up’ to make room for me – it is a game we play and he knows what to do, although he giggles as he shuffles up just a centimetre or two at a time. On a slidey, plastic bench it is easy to shuffle him along with my hip, but this was a thick cushion and so I could not slide him, he had to make room for me. I ordered our brunch and he watched the waitresses buzzing back and forth, until our drinks arrived. He took a sip of his juice but thought he was hilarious to steal my malted milk biscuit from my saucer and to pop it into his mouth whole, indicating that he was felling both cheeky and hungry.

Before too long, our meals arrived and we all tucked in. I tore Joshua’s cheese and ham toastie up into smaller pieces so that he could help himself, and he tucked into the tortilla chips while his french fries cooled enough to eat. I like him to eat finger food as he can choose what he wants to eat himself  and pop it in when he is ready, rather than being reliant on me to help and leaving me free to enjoy my meal. He ate most of his lunch, grinning away throughout the meal so I know this felt like a real treat for him. After that excitement, we headed home  again to enjoy a quiet afternoon at home. Once he kicks off his boots and splints, that suggests that Joshua is in for the rest of the day. There was an old song,by Paul Young when I was young “Wherever I lay my hat, that’s my home”  , but in Joshua’s case it is ‘Wherever he lays his boots and splints’! He enjoyed his short trip out, but he is always delighted to come back home.

 

New Day Dawning

Every morning starts a new day : Joshua went to bed last night, dosed up with Midazolam, with a head bewildered with the after effects of electrical activity in his brain. His body was exhausted but he could not sleep, his brain would not let him sleep until 2 am. During the evening, he would come downstairs and I would walk him back up to bed. On the final occasion, at 11pm, I climbed into bed next to him – perhaps he needed company or a cuddle. I did this to get him to sleep from him being small – so much so that we invested in a double bed for him when he was 2 years old as he was never in there alone and so we thought that at least we should both be comfortable. But more recently he has not wanted me in there and neither of us sleep well when it does happen, that I never last the whole night. So we both coughed and wriggled until 2 am ,when I finally decided to climb out and get into my own bed, hoping that he stayed put and managed some sleep, to allow me the same luxury.

So my night of sleep lasted from after 2am until 7.30. I was delighted to see that the sun was making an appearance and the endless rain seemed to have stopped. Then even better than the sunshine, Joshua appeared down  the stairs an hour later, with a big smile on his face. Whatever muddle his brain was in from yesterday’s seizures and Midazolam, seem to have dissipated overnight. He greedily ate his porridge and then settled down on the settee in his den for a rest. The anesthetic stays in his system for at least 24 hours and so he is likely to be subdued today as it works itself out, but he must feel better than he did.

The thoughts and worries that go through your mind at 2 am, are usually exaggerated and often somewhat distorted. I find that most things feel better in the morning, as today is a new day. A fresh page that is still to be written and that we can influence, whereas yesterday is behind us and cannot be changed. So onwards and upwards, we pick ourselves up, brush ourselves down and face another new day…..

Friday Night In

Joshua got home from school at 4 pm and he barged into the house, while I was talking to the driver and escort in the rain and wind tonight. We have a coming home routine : I remove his boots and splints and replace them with slipper socks so that he can get more comfortable at home. They have started removing his boots at school during the day too, but sadly this afternoon he stubbed his toe badly and split the top of two of his toes, so he must have given them quite a bashing. So it was my priority to get his boots off, to take a look to ensure that his boots were not rubbing on his sore toes. Next, he has his teatime medication , tonight in chocolate mousse.

Usually he goes into his den to watch the Show, but tonight he stayed in our snug which is super-cosy as we had had the stove lit all day. He lay on the settee while I prepared his evening meal. But before it was ready, he began to experience seizures on the settee – that might have been another reason that he wanted to stay under my gaze, perhaps he sensed that the seizures were on their way and did not want to be alone. One seizure followed another but in between, he kept trying to stand up, thinking that they were over but I encouraged him to stay sitting down. As the seizures were still coming after 5 minutes, I fetched the rescue medication from the kitchen cupboard and threatened Joshua with it, waving it in front of his blurred eyes, hoping to scare them off. Although they slowed down, they were still coming after seven minutes and so, the inevitable happened and I had to administer the medicine. It takes several minutes to take effect and they always seem to be the longest few minutes, as you start to doubt that the seizures will ever stop and have that sinking feeling that it is going to be necessary to call 999. But thankfully, as usually happens, the seizures gradually subsided and he relaxes into a deep anesthetic-induced sleep. So I will keep his tea warm for him until he is ready to eat later. He is likely to be washed out for his Friday night now, but hopefully he will reset overnight, so that it does not blight his whole weekend.

The Demon Epilepsy

November is National Epilepsy Awareness Month and so I wanted to do my bit to improve the understanding of the condition. I had no experience of epilepsy until we had Joshua and so I like many others, only associated it with people lying twitching on he floor, foaming at the mouth – as I had seen one of this type of seizure at school in the PE changing room once before – and it was definitely something to be feared. No ,from first hand experience, I appreciate that there are so many different types of seizures and they do not all have to be the traditional Tonic Clonic presentation. Absences can be much more subtle – they can simply look like a loss of concentration for a few moments, rather like daydreaming , so are not dramatic at all. In Joshua’s case, these mild absences often indicate that something more dramatic is ‘brewing’.

For Joshua, all of his seizures affect his eyes in some way : with absences, he tends to look upwards and stare at the sky. Most seizure types cause his pupils to enlarge and often that can be an indication that a seizure is on its way. For his full blown, tonic clonic seizures, his eyes can roll up inside his head or his pupils can be facing different directions from each other. So his eyes are a useful indicator that something is wrong.

The most frightening type of seizures are the full Tonic Clonic ones and at their worst, it was as though somebody had shoved Joshua very hard backwards or forwards, or even thrown him, as he fell to the floor with such force and rarely with much warning. All of his limbs would be stiff and so he would not crumple like a normal fall and he would have no power or instinct to put his hand out to break the fall. So inevitably he would hit the ground, or furniture, with real force and often his head would take the impact. As Joshua got taller, the chances of him hitting a hard surface increased and even when wearing his helmet for protection, somehow he still managed to damage himself. He has scars all over his head and body from injuries sustained from such falls and we have had several trips to A&E as a result.

Fortunately, these days he is less likely to incur that type of seizure; nowadays he has clusters of seizures where his whole body will tense and tremble for seconds,  while his breathing becomes noisy,then he will relax briefly, before another takes hold. If this pattern lasts for longer than 5 minutes in total, then it is time to introduce his rescue medication, which is a form of anaesthetic, to relax everything. Thankfully Joshua no longer has rectal emergency medication, his Midazolam is released into his gum area, where it is quickly absorbed and within ten minutes, if it has not settled the seizure down, which is almost always does, then it is a 999 call for an ambulance as we cannot give a second dose, as there is a risk that it will compromise his breathing. It means that Midazolam needs to be carried everywhere he goes, just in case. We had to use it last week on holiday and he almost had it on Tuesday night too, but thankfully the seizures stopped on their own with no intervention from me.

And that is one of the problems with epilepsy,  nobody knows when the seizures will strike and so you have to be constantly on red alert. Joshua’s main triggers are heat, illness, tiredness and excitement and any one of those may set his seizures off, he is not affected by noise or flashing lights as some sufferers are. We do all we can to keep him cool in hot weather as that impact is predictable, but excitement is a cruel trigger : just when he is having fun, bammm epilepsy strikes to take the joy away and create a drama. One instance of that was while at a Bruce Springsteen concert a few years ago, one minute he was happily giggily away loving the music and the next, he looked terrified and he had to be laid down on the floor and to take his Midazolam, we all missed the rest of the show.

Joshua has  severe learning difficulties and a weak right side, but I would say that it is his epilepsy that has impacted on him most throughout his life and is the condition that looms over him always, threatening to take hold. Even with 15 years practice of dealing with his seizures, they are still frightening. I may have learned to be outwardly calm and reassuring, but internally, they make me feel sick and scared every time.

Bonfire Night

November the 5th is a significant date for our family for a couple of reasons : It was at a bonfire party back in 1983 that I finally relented and agreed to go out with my husband , after him asking me for over a month. So it represents a special anniversary for us and 36 years seems a lifetime ago – it took us another 12 years before we got married.

But also, Bonfire Night marks the first full seizures that Joshua ever had and it was terrifying. He was 8 months old and we wrapped him up well to take him to a local firework display and bonfire party as it was a typically cold, damp November night. I do not remember anything about the bonfire or whether baby Joshua was interested in the pretty colours and loud noises of fireworks, but the drama began when we got home. We removed his layers in front of the wood burning stove, to try to warm him up and he began fitting. His little body was twitching and his eyes rolled up inside his head for what seemed like a eternity, but then it passed. We did not call an ambulance or take him to A&E – which seems very cool of us now I think -but I took him to the GP the next day and described what had happened. Rather than using the epilepsy word, he thought that it had probably been febrile convulsions from the extremes in temperature that his small body had been exposed to in the one night.

It was terrifying to witness and of course, you feel so helpless as a parent – all you can do is reassure and comfort your child and wait for it to pass. 18 years later, Joshua’s seizures are still frightening to see, that does not get any easier, but I have got more confident that they will pass and of course, now we have emergency medication to use if they do not stop on their own. Joshua was delighted to see me home last night, he came to seek me out when he heard my voice in the kitchen and gave me a beam and several bear hugs. He was unusually content just to sit next to me while we ate our tea and then he enjoyed his bath. He went to bed around 8.30 and I came downstairs and was watching TV, when he appeared again. I took him back to bed and lay next to him for a few minutes, when suddenly his body went rigid and he had a seizure. It was just a single one but it lasted for around one minute then he relaxed. I stayed for a while longer and after more than a 15 minute break, he had another single seizure, which is not his usual pattern at all. I stayed for a while longer, until he fell into a deep sleep and then I came downstairs.

Seizures have sadly been a part of all of his life, from his early days in special care, to that fateful Bonfire night, right up until last night. We have taken  some drastic measures to try to remove them from his life – the most dramatic being brain surgery – but although they are reduced, they will probably always be something that Joshua will have to live with.

One more Angel in Heaven

It was a sad day at school yesterday as one of the pupils died suddenly over the half term holiday. I do not know the details but he was only a 12 year old boy and I can only imagine how devastated his family must be feeling right now. The Headteacher and staff will have had to try to explain to his class why he was missing and that he would not be returning and given the range of cognitive ability at school, it will have been a painful message to deliver and not easy to try to ensure that everyone understood. Knowing the school as I do, the children’s welfare comes first and they will do all that they can to comfort his peers and support his family. But it is always shocking when a child dies, someone who has not yet had long enough to grow and live his life to the full. Of course it reminds us also of the fragility of life and makes us want to hold our own children close and protect them as much as we can.

Joshua does not understand the concept of death, as he deals in the here and now and what is in front of him. Joshua adored his Granny who died over 5 months ago , but now that she is not in his life anymore, he has adjusted really well. I have no doubt that if she were to appear again – and I so wish that she could! – that he would greet her with a huge smile and one of his bear hugs; she will not be forgotten, but it is out of sight, out of mind for Joshua. I was away working yesterday and he will not see me again until after school tonight, but he had Yorkshire Grandma and his Dad to take care of him, so he will not have missed me at all. I am confident that he will not have given me a thought, until I turn up tonight when I will probably be treated to a hug and a kick as his greeting. I am pretty certain that Joshua does not have the capacity to speculate where his Granny  has gone or where I might have been yesterday, it is a simpler response to adapt and carry on regardless, so long as his basic needs are still being met. That outlook will be why he has settled in so well at respite, as he simply transfers his affections to the staff who are looking after him and does not pine for home or his family.

In the coming days, our thoughts and prayers are with the family and friends of the young boy and I hope that they can find some peace, somehow.