Before Aine came along I had a career. I studied, I graduated, I got a well paid job in which I was respected for my knowledge and my approach. I enjoyed it. Not every day, some aspects of my job weren’t very nice. But that’s work isn’t it?
I continued to work until Aine was five. It became clear shortly after the littlest was born in 2012 that working at this level wasn’t going to be possible any longer and so the decision was made that I wouldn’t return to work after maternity leave. It wasn’t an easy decision. MrM and I agonised over it. I’ve always worked. When at college I worked at a cash and carry. All of my higher education studies were whilst working full-time, attending evenings at college for five years.
The thought of not working, when you are employed, is so appealing. Relaxed mornings, time for hobbies and meeting friends. You picture lazy breakfasts, catching up on books and all the things you’ve never had time for. The reality is so very different. In my case it resulted in total boredom and a loss of who I was.
When the littlest was 12 months old, I got a job at a local school at lunch time, a lunchtime assistant, okay, I was a dinner lady. It was a nice job, I love children. I encouraged them to eat their food, we played games, I soothed them when they missed their mummies, or had bumped their head, or couldn’t find a friend. But it didn’t fill the hole that leaving a job with grown ups had created. I handed in my notice.
A few weeks before I did, I’d attended for an interview with a well known retailer. I was successful but the hours that were available were impractical. I needed to work when MrM was at home. He’s the other Aine expert you see, others try to help, but sometimes you need an expert!
Anyway, a few weeks later I was offered some suitable hours and commenced my new role. Ten hours a week. I’ll be honest at first I didn’t think it was for me. I moved department after a few weeks and found my fit.
Honestly, it’s hard to go to work. It takes a day off the weekend, a day when normally we would all be together for the first time that week. Every other weekend I work an afternoon and evening and that’s challenging for MrM; as you know from my previous musings bed time is not easy! It is not unusual for me to come in from work at 10.15 pm to a restless or screaming Aine. But I go. Because it gives me space. It gives me adult company. It gives me many laughs, and a lovely discount card. It pays well to reflect what I do. It doesn’t challenge me. But I don’t want to be challenged. I have enough challenges in life. It allows me space, freedom, to be me, Kate! Not mum, not nurse, not teacher or housekeeper. Kate. And that is so valuable.
Today, yesterday is forgotten and we got on with our holiday. As it nears the end we come down to the beach to do what Aine loves best. Throw stones in the water. Clad in her pink waterproof dungarees, she looks ready to attempt river trout fishing. She is in her heaven. The pebbles are all sizes, travel all distances, and if we stayed here until midnight I don’t think she would ever get bored. MrM, the littlest and the biggest go off to build a dam, I sit watching Aine, practicing mindfulness and reflecting on our tempestuous week in Wales.
Holidays are stressful. Even more so when you have no formula, routine or certainty. But we did it. Helped along by a bottle of Hendricks and a few Hoegaardens, we did it. I’m glad we came, I’m grateful for the kind hearted and generous friends that leant us their happy place and I’m glad that today, we have our Aine back.
For now we have sunshine and calm.
It’s 4.15 am on a very windy Thursday in August. We are in a caravan in mid Wales. I have been up with Aine since 11.30 pm. I’m out of tools to keep her happy. So far we have watched tv in the lounge, watched dvd’s in her bed. I’ve made an uneaten ‘breakfast’ of peanut butter sandwiches. I’ve watched her play with the iPad, played I spy with letters, colours and shapes. We have had butterfly kisses, actual kisses, hugs, high fives, sang the theme from friends and drawn snakes on each other’s backs.
But she wants her Dad. ‘Oh just let me have my Dad’ she wails. ‘Daddy is asleep’ I tell her. Not good enough. ‘Right, I’m going then’. ‘I’m going to my dad’ accompanied by lots of aggressive pointing, arm biting and wall hitting. A little bit of scratching and pinching and a proper slap on my chest I and cave. I’ve tried everything I can to calm her, entertain her, convince her to sleep and I’ve failed. Miserably. I fetch Daddy. This is what she wants, right!
Hahahaha. Cue hysterical laughter!
No, it isn’t what she wants. To be fair, the poor little mite doesn’t know what she wants. All she knows is that she doesn’t feel ‘right’, she can’t go to sleep, she can’t settle to anything, she doesn’t want to be alone. We have to find the right formula to help her. Blindly. So fetching Daddy wasn’t enough and she switched her attention to transferring to the parental bed with MrM and the biggest one and I’m in the lounge with tea, digestives and Fifteen-to-one!
And this is epilepsy. It’s not naughtiness, stubbornness. She cannot help it. She’s out of control. We have to tough it out, keep trying things that may help her to settle. Sometimes, as horrid as I know it is, when she’s like this, I wish she would have a seizure, reset her brain, because it can go on for days. She must feel wretched and our nerves are in tatters. We all need a good nights sleep. Some down time.
This is the side of the condition that isn’t talked about, in some cases not recognised as epilepsy. But after eight years of living with it, we know. She won’t go to sleep, despite the melatonin, she wakes in the night or super early, she looses her appetite and she is incredibly intolerant. These are the signs of seizure activity. We switch to high alert, we pat the rescue meds frequently to reinforce their location, we make contingency plans. No matter how hard we try to gain control, epilepsy currently rules us, owns us, it’s an evil beast.