The best laid schemes of Mice & Men….

Yesterday I was looking forward to going home after a weekend of working away, to sleeping in my own bed, to seeing both of my boys and the dogs again. Sadly things went out of my control and once again, unpredictability kicked in …

I had enjoyed taking some sunrise photographs around London and had eaten a tasty hotel breakfast. When I got back to my hotel room after 8, Joshua’s respite provision rang me : the paramedics were there already as he had had seizures that would not stop and was on his way to A&E, could I come and meet him there? I explained that I was working in London but would send my husband, so I called him immediately. Then I felt sick and began shaking, with my mind going into overdrive at how far away I was and what Joshua might be feeling with neither of his parents there, beside him.

I began to take the practical steps that I could: I contacted his school taxi driver to divert them from picking him up, I left a message for school that he would not be coming in and I called my client, to explain why I needed an earlier and shorter than planned meeting and I investigated train times to a new destination! I checked out of the hotel and had my debrief meeting, which began with my client asking after my son so he heard Joshua’s brief medical history! I then had to focus on work, knowing that my husband had arrived at hospital so Joshua was being taken Care of.

I excused myself after most of the work was done and caught a tube train to London Kings Cross. I’d had a text from my husband to know that Joshua was no longer fitting but they were treating him for infection with iv antibiotics as his temperature had been 40 degrees. They had taken blood and had talked of a chest X-ray to investigate pneumonia! So I boarded a train knowing that I’d be with him in two more hours. During the journey I had photos and updates from my husband, which helped settle my nerves.

I found his ward, as he had been moved from A&E and Joshua was dozing when I arrived. But he sat up and beamed when he saw me and we hugged, delighted to be reunited. He moved wards again, to a teenagers ward where he could stay overnight , which did not contain screaming poorly babies,as they wanted to keep him in as a precaution and to give him more antibiotics overnight, to ensure that his temperature did not spike again.

So that is where we both are now, not in my own bed as planned, but on a camp bed next to Joshua’s hospital bed. We have both just been woken for his 2.30am iv antibiotics, which he took in his stride. He’s been a very good patient so far and I’m hopeful that they will allow us home later today if all goes to plan – though this eventuality wasn’t in anyone’s plan!

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Work/Life balance

I have been working away since Thursday, all weekend, which is thankfully a rare occurrence for me and I will be really pleased to get home this afternoon, as I feel as though I have been away forever. I am so lucky that I was able to see Joshua, my friends and Matilda on Saturday afternoon, as an oasis of fun during a pretty intense weekend. I left our accommodation at 6.15 yesterday morning, both Joshua and I were up and padding around between 3am and 4am, when he had two bowls of cereal and we shared some toast, then I packed my bags while he watched Shrek on the ipad.  He was restless and so I snuggled in next to him around 4.30am and set my alarm for an hour later. I felt more tired when I re-woke up after an extra hour’s sleep, but I managed to slide out, shower and creep off in the dark without disturbing him, leaving my friend, who was also up early, in charge.

I drove for 4.5 hours, enjoying the driving experience until I reached our capital, where the traffic and navigation became more challenging and I struggled to find my destination. I work in market research, so I was moderating focus groups. I enjoy meeting new people, asking them questions for 2.5 hours to get to to the heart of issues, then knowing I will never see them again. It is  a people business and I enjoy getting to know strangers. I have been with the same two clients since Thursday now and we will meet up again this morning, to debrief, before I catch the train home.

During this intense weekend, I am a market researcher and  a project manager, I am not Joshua’s Mum, so it gives me the opportunity to leave him in the capable hands of others and to focus wholly on my work. I would not like to do that permanently, but it makes a refreshing change of outlook for a few days. This weekend I have been concerned by reporting and logistics, and the fact that Joshua needed his emergency medication at his respite provision, was not my problem. But even so I called them ,as usual, at 9pm for an update and then I promptly fell asleep with the lights, TV and my glasses all on!

One thing that has worked out well is that after these next 4 days of work, I have the parent coffeee morning at school on Friday – so need to get baking! – then we have a week’s holiday for October half term holiday together, when it will be no work and all play. I cannot wait for that week away, it could not come at a better time.

Theatre of Dreams

We had a brilliant theatre experience yesterday when we saw the musical ‘Matilda’. From the minute we rang the doorbell to be allowed in through the only wheelchair friendly door, we were looked after by Jack. He welcomed us into the theatre with a grin and ushered us towards a wheelchair lift to gain access up the three steps into the foyer. He asked us to wait in the foyer while he met another wheelchair user and then we were all taken to the lift to the circle, he made the crowd part like Moses and the Red Sea, so we did not have to struggle through the crowds.

We were shown to our seats in the circle, fortunately ours were the last four seats at the end of a row. Joshua managed to wriggle down the row and to negotiate those seats that tip up ,well. We were in position , up high, but with a great view of the stage in front of us and we began to greedily eat our snacks and treats, before even the orchestra had arrived.

I was blown away by the show and by the child actors, bravely singing solos in front of a full house. Joshua enjoyed the singing too but got a little distracted by the line up of long, straight hair in front of him which he really wanted to stroke! At one point in the first half he had a few small seizures and then he dozed. I changed him just before the interval as he was eager to stand up but it was not easy getting up the few steps in the dark – I needed Jack’s torch- and he struggled but once in the disabled toilet, I could see why : he had undone his boots, which will have made walking extra difficult and precarious.

The second half of the show was even more mesmerising- the dancing and the changing sets and stunts were breathtaking. I would really recommend going to see the performance,if you get the chance.

After the show we found our own way to the lift and had to glare at some able- bodied customers who were queuing to use the small lift down . Jack was downstairs manning the foyer lift and apologised for not coming to our aid, but three excited children , full of sugar perhaps, had been sick over him in the interval. But he was so cheerful and welcoming that he played a big part of my perfect theatre experience.

We stepped out onto the street with grins on our faces- and I had a tear in my eye- knowing that we had shared a really special performance. Those tickets were a great Christmas present and might represent the start of an annual tradition, as it went so well.

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……

Home from Home part 2

I left work early yesterday to take a look around a second possible adult respite provision, which is just 25 minutes drive from home, so is very convenient. Each time I do this, it reinforces the fact that Joshua will have to leave his current provision too soon and start again elsewhere, which is always a daunting prospect. So I am looking around, trying to picture a grown-up Joshua in this setting:

My first impression was not great as on entering, there was a reception desk and then a long corridor with offices off it, so it felt more like a hospital than a homely environment. Then it opened up into a large lounge area, which  felt like a hospital waiting room to me. There were two young men in there, lounging in armchairs, gazing at a television in the corner and I have to say, my heart sank. Then the lady showing me around, explained that they were awaiting their evening meal in 15 minutes, so I decided that perhaps I had caught them in a lull. The tour continued through double-doors into a large adjoining daycare facility and I was told about the activities that ‘service users’ enjoy there, although it was deserted when I was there.

Then she showed me one of 7 downstairs bedrooms, which were purpose built and very luxurious : the room was roomy, with tracking on the ceiling for a hoist and it had an ensuite bathroom, a television and a view out onto a large courtyard area outside. There were another 7 bedrooms upstairs and another quiet lounge. So then I had seen everything and she was able to answer all of my many questions, they are very comfortable with epilepsy and administering emergency medication. There was more flexibility over dates than at his current provision, in that you could save up your annual allocation of days and book a longer stay, potentially enabling us to go for a holiday longer than a weekend at some point in the future.

I felt uneasy about the ‘service users’ that I saw there however, as they were drifting around unsupervised. Joshua would need more direction than that and he would need close supervision for his own safety, he could easily have a seizure and fall down the stairs or burn himself in the kitchen. He would also need to be kept away from the reception and office areas for their protection, as he likes nothing better than to play on the telephone or computer keyboards and to scatter important papers and hide things – we have lost our TV remote control for over a month now! Perhaps the young people that I saw were more capable and independent than Joshua, but I cannot picture him in that large lounge, lolling in an armchair waiting patiently for his tea, he wreaks chaos at home in the run up to mealtimes, when I am distracted in the kitchen.

So my gut reaction is that it was not right for Joshua and I still have two more options to review, so I am keeping an open mind. I fear that we have all been spoilt by the excellent care that Joshua receives at his current provision and perhaps there is not as adult equivalent in our region, but I continue to seek it out.

Guilt Trip

This is a busy week and when I am away or out a lot, I get anxious about Joshua and feel guilty about not seeing enough of him. We were both out on Monday night and then last night I was at school until 9pm at a Governors’ meeting. I left work early to get to school for the 5pm start and was there until 8.30. So my husband had got Joshua fed, bathed and in bed by the time I got home. I peeped into his bedroom and out of the darkness I heard “thank you” so I went in to kiss him goodnight.Then of course he decided that he wanted to get up again, so I had to persuade him that it was still bedtime. He has had a run of seizures at bedtime lately and last night was no exception, which of course makes me feel worse for being absent. He had a narrow escape falling down in the bathroom, where he narrowly dodged the ceramic basin.

I will be at home tonight so will see him properly, once I get back from viewing another adult respite provision, but I am away again tomorrow night for work. Many working mothers feel guilt that they miss out on seeing their children growing up and regret missing key moments in their child’s life. I have worked part time since Joshua was 6 months old and so you would think that I would be used to this separation by now, sixteen and a half years later. On balance I feel that it has been the right thing to do, for us both as it enables me to be more than ‘Joshua’s mum’ and as I have said before, I am blessed with a flexible employer , which means that I have not missed Harvest festivals, open mornings, etc.

Somehow when Joshua suffers seizures, my guilt intensifies however : I feel as though I should have been here to reassure him, as you need your mum when you are ill or frightened, so I worry that I have let him down by being absent. But that is irrational regret, as he was with his Dad, he was not fitting alone and I know that I am not the only one around who can reassure him during seizures. Guilt is such a waste of energy, I know this, as it doesn’t help anyone as I cannot change the fact that I was at school last night. All I can do when I am not around, is ensure that he is surrounded by other people who care for him too : his dad, Yorkshire Grandma, friends and his respite provision. I am fortunate not to be a single mum and raising and taking care of Joshua is a team effort.

On a school night!

I fear that this is going to be a long week : I left work early as my husband and I went to see a band with friends and my sister in law and we were not home until 1 am…on a school night! It was a brilliant show as we knew every song – they used to be our ‘holiday tape’ in the car- and the light show was incredible. The tickets were a Christmas present from last year and at the time we dithered about getting Joshua a ticket.

He used to enjoy live music , he has seen Bruce Springsteen in concert several times and been mesmerised. But latterly he has tended to fall asleep at concerts , indicating that he is happier to watch a DVD. As tickets are an expensive treat , we decided not to take him on this trip and so Yorkshire Grandma came to the rescue, meeting him from school and staying overnight so she could get him to bed. It was fortunate that he did not come as our seats were third from the back, up in the gods, so he would never have managed all the steps and we were mid row too- he could not have scuttled along a row without treading on people’s toes or stumbling and grabbing them. So this was just a night out for the grown ups and I’m sure he’ll be livelier than me this morning. On the journey home, after a day’s work first, I kept saying ‘it’s still Monday!’ as my eyes seemed to be open for a long time yesterday .