The Aftermath

We were full of euphoria to be back home after our adventure at A&E, and then normal life resumes. Joshua slept well in his own bed – as did I but for less time – but when he did get up, he had a very runny nose so he had been brewing a cold, which will have contributed to his high temperature too. Due to his upset stomach, he needs to be off school for 48 hours, even though I am pretty sure he is not infectious, that it is a reaction to the Midazolam and anti-biotics. But pretty sure is not definite and we cannot risk infecting his fellow students and staff ready for their half term break, so we made arrangements for him to stay at home : I was in charge until 11, while my husband attended an apointment that he had already made, and then he took over for the rest of the day , while I went into work, despite my “fuzzy head”. I have orgnaised that Yorkshire Grandma will take care of Joshua today and then we should be back at school tomorrow, all being well.

Despite his runny nose, Joshua was full of energy and was constantly drifting between his bedroom and his den, unsure what he wanted to do or what he wanted to watch. He refused to eat the lunch that his Dad made for him and he spat out the tea that I prepared too. He would however eat satsumas and rice pudding, suggesting that he has a sore throat as well as a runny nose. It is necessary to be a detective when your child cannot tell you if something hurts or if he feels ill.. So I dosed him up with magic Calpol and gave his another hot bath, and stopped nagging him to eat his meal, as I am sure that he will more than make up for it when he feels better and his appetite returns.

My colleagues at work wanted to hear about my adventure : my busy working weekend and also our trip to hospital. It was a big day in our office calendar yesterday, we had our annual quality audit, when an inspector comes to assess if we are keeping to our stated procedures. It is usually a stressful day but I had a new outlook on being examined : after the stress that I had experienced over last weekend , an inspector asking me questions and to show him my paperwork held no fear for me at all. In fact, I became rather giddy during my ‘interview’ but fortunately I did not cause us to lose our accreditation with my light-hearted approach. But compared to the life and death scare of a call that your son is being taken into A&E with uncontrolled seizures and a sky-high temperature, market research, and whether or not I ticked a particular box, was very low on my list of priorities. But not so low that I chose to stay at home and avoid the inspection  completely, which might have been the easy option. But since when did I ever take the easy option in life?

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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.

Tales of the Unexpected

Almost just as soon as I posted my blog yesterday, Joshua began to have a cluster of seizures ; he was curled up on the settee next to me, just dozing off, and then his breathing became laboured and his eyes opened and his arm tensed and stretched out. I sat next to him, grabbing my phone to time the seizures, and held his hand and stroked his back, to reassure him that he was not alone. He had 11 of those seizures in just five minutes and so I left him to go to the kitchen to fetch his emergency medication, as it was not looking as though they would stop on their own.

The seizures started to slow down in frequency, as after 9 minutes, he had endured 14 seizures and gradually they stopped, without me having to intervene, but it was an intense quarter of an hour for us both. Joshua then only wanted to sleep, so having been up and lively since 3.30, at around 6am, he went into a deep sleep. I suspect  that he had a sensation that the seizures were on their way, since 3.30, possibly that was what woke him up and so it will have been with some relief that they finally arrived and in a way, he could now relax.

But this gave me a dilemma, when at 7am he was still fast asleep and I would normally have been giving him breakfast. I have found in the past that, if he is woken before he is ready, that he is more likely to begin fitting again. So I decided to cancel his taxi to school and to text work to say that I would be late into the office, and to see how he was once he woke up, only when he was ready.

Joshua did wake up after almost three hours and he seemed to have recovered – he slept himself better! So I got him dressed and set off to school, where we arrived almost an hour after his usual start time. He was happy to be there and he greeted everyone that he saw on his way in, telling many of them that he ‘liked’ them. I was confident that his seizures were behind him, but you can never really know for sure, you just need to have faith that the school staff will do the right thing for him, should seizures begin again. They have school nurses there who have his emergency medication if required.

So I returned to our home town, where I work, and got into the office by 11am, feeling as though I had done a day’s work already!

Fruits of my Labour

While I am on holiday and not at work, caring for  Joshua full time ,as he is not at school during the day, it gives me some insight into how life might look if I was not a working mother. I went back to work on a part time basis, three days a week, when Joshua was 6 months old and even back then , I had already worked for my employer for 11 years. When he went to school, I increased my hours to work four days a week and to take Fridays off and 12 years later, I have maintained these working hours. My fridays are very precious to me as they are days when I get to do what I want to do, without having to consult anyone : they are when I fit in my haircuts, when I arrange to see friends and family, when I make my chasing phone calls to the Council or NHS, when I can commit to my monthly parent coffee morning at school and when I can spend some time with my husband, without having Joshua around. If I do not do these things on a Friday, I tend to fit them into our precious respite weekends.

On reflection, Friday is probably the only day of the week when I can do normal things and it is the only day of the week when I can actually put myself first, so it is no wonder that I am loathe to give it up!

Juggling work, albeit part-time, and raising a child with special needs is not an easy balancing act to achieve. In addition to the normal challenges that working parents face, such as organising childcare when their child is ill or covering the long and frequent school holidays, there are other considerations when parenting a child with additional needs:

  • Joshua has multiple health appointments and has even had extended stays in hospital in his life – an unplanned emergency admission in 2010, his brain surgery in 2014, botox and subsequent phsyiotherapy sessions are the longest commitments that I can recall.While my employer would release and pay me for my own health appointments and crises,covered by their sickness policy, I have to make the time up or pay it back for Joshua’s appointments
  • There have been frequent emergency calls from school over the years, that Joshua needs to come home as he has had his emergency medication or to meet the ambulance at A&E as he has had seizures and fallen and cracked his head open. In those instances I just drop everything and drive the 30 minutes to school or 40 minutes to A&E and have never once asked permission to leave.
  • During school holidays ,or if I have needed to work away, organising childcare has been challenging. I now have 25 days holiday a year, which has to be used carefully as it is not enough to cover the long summer holiday, let alone the two weeks at Christmas and Easter and the three half term holidays. We are fortunate to receive direct payments, which enable me to pay Yorkshire Grandma for after school childcare and for some days in the schol holidays. However at an allocation of 6 hours a week during termtime and 10 hours /week in the holidays, it does not stretch to all of the childcare that we need.
  • Given Joshua’s special needs and his epilepsy in particular, it is not a simple matter of paying a local teenager to babysit for us. Whoever we entrust him to, has to be trained in administering Midazolam in emergencies and how to handle seizures. They have to have eyes in the back of their head as he cannot be left unsupervised at all, so that is a demanding requirement and I would only trust certain people to take care of our most precious son.

All of that being said, I get more than just my salary from working : I get an identity of my own, where I am not just regarded as ‘Joshua’s mum’.  I get a distraction from caring, when I get to be normal and I become preoccupied with issues other than disability. I get a sense of achievement, as I am good at my job, and I get thanked and praised by my clients, which boosts my self-esteem.

I am fortunate to work for a small, family-run firm and as I have worked there for 28 years, I have grown up with them. They supported me when Joshua was born, with all of his complications. I always say that I would not have been able to have kept working as Joshua was growing up, if I had had a “proper job”, where you cannot easily cast your work aside when that emergency call comes in.

Joshua has two more years of sixth form left and once he leaves school, then a new chapter in all of our lives will begin. But for now I am grateful that I have been able to work throughout his childhood and school days, even though it has not always been easy.

Separation Anxiety

I will be working abroad this weekend, which is a rare occurence, but I will be leaving home on Saturday morning and I am not expected back until midnight on Sunday, after a full- on weekend project. So I am having to plan both, what I need to take with me to Germany ,as well as thinking about what I need to leave in place for my husband and Joshua. They will be fine I am sure, it is just one night away, which they have managed before of course, but it is not easy, especially because Joshua has had some bad clusters of seizures this week – he was off school yesterday after needing rescue medication at school on Tuesday. – so that will make it much more difficult to leave them, as I find it hard to handover control.

I returned to work on a part time basis when Joshua was 6 months old, just three days a week initially and then when he went to school, it developed to four days a week,and I still  treasure my Friday’s off. This was my first job from university, so I have now worked there for over 28 years! I have often been asked how or why I work, when being mother and carer to Joshua is so demanding? For me, it has often been a lifeline – something that I can control – unlike Joshua’s health needs – , something that is familiar and that I am good at and something that allows me to forget being just ‘Joshua’s mum’ for a while. Of course I , like everyone else, have bad times when I regret my decision to work and wonder if life would be simpler if I didn’t, but on balance it works for us as a family.

During my normal working week, I have to be flexible, to accommodate Joshua’s health needs, as he will always be my prioirity. There are many times when I have had to rush out of my office to meet an ambulance at school after seizures or a bad fall or when I have had prolonged carers’ leave after Joshua’s surgery for instance, and I am grateful for the flexibility that I have been shown throughout his lifetime. When I went off on maternity leave back in 2001, none of us knew that Joshua was going to be more demanding than most ‘normal’ children, but the family firm that I work for have accommodated my needs and they know, I hope, that I give the most that I can at any time.

But this weekend I need to hand over the carer reins to Dad and I have to focus only on my work, as there will be nothing that I can do from Germany. I will do the best job that I can this weekend, then return as Mum  from Monday morning.