I had a career once...

Once upon a time, I had a good career. I had a high-profile, well-paid media job in London. Of course I knew things would change when I had kids, employers don't want the hassle of someone who can't come into work because their child is ill for instance. You have to make adjustments, switch roles sometimes. But I had hoped that after 6 or 7 years I could re-start my career again.

Then along came our little monkey. He was healthy and normal at first, but started having seizures as a baby. At the time I thought, 'As long as it's just epilepsy, it will be fine.' But it wasn't. As the years went on and he stopped learning to speak it became obvious something wasn't right. So I made him my job. I spent all my time learning sign-language, pushing for therapies and trying to integrate him into playgroup. Getting him a statement of special educational need was a full-time job in itself.

Now he's in a good special school and he's doing well there is cause for celebration. I am proud of what I've done but after 6 years devoted to trying to help him, I feel that I am missing out. I can't restart my career as I had dreamed of doing. Outside of school he needs a 1:1 carer, which means I can't send him to an after school or holiday club and I can't send him to a childminder who will have so many others in her care.

Which means if I want a normal job I would have to be earning a huge amount of money in order to pay for a nanny. I do have a job during school-hours, which on a practical level is very useful, but I find it more and more frustrating every day. My experience is not valued, I am not listened to, I am told if I don't like it then they have plenty of people waiting to fill my role. It's all such a long way away from what I had.

Most of the time, I think about little monkey and his sister. 99% of the time, they come first and second, I come last. But sometimes, when I've had a really awful day at work, I think of me and what I've missed out on because of his disability. And sometimes it just doesn't seem right.

How do I stop worrying enough to get some sleep?

What is it about motherhood that brings with it a barrow-load of worry? No matter how much you do and how hard you try it's nearly impossible to shake off that little nag in  your head. When the child is ill, it's almost constant. Regular kids get sick for a week or so, then it goes away. You worry about them for week or so, then you stop. But somehow I seem to worry all the time, during the day and (worst of all) at night.

He was 5 weeks seizure free when we went to see his neurologist. She was thrilled but the very next morning he had a fit. He used to have all the seizures in the afternoon when he was tired. Trouble is, now he's having them in the early hours of the morning. When I am trying to sleep. And the first thing I know is when he wakes up crying, vomits and cries for the rest of the day.

So my reaction? Worry. I go to bed worrying that he'll have another serious fit when I'm asleep and he'll stop breathing.  I wake up at 4am, sweating and my heart racing, worried that he's having another fit. I'm living in a sleep deprived state because I'm struggling to cope with the uncertainty of not knowing when it will happen, and if I will know about it.

I've asked my OT for an epilepsy alarm and put our names down with a charity that provides them, but there's a wait. Even when the thing arrives I don't know if it will work (my epilepsy nurse doesn't think they're very good). So whether I get an alarm or not, I still need to learn to relax. How do I let-go of my fears so that I can sleep?