Real lives: `No matter how ill or disabled I am, I am still the mother of two lads and they need me' For much of my life all I can give them is my presence, my love and my time

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Indy Lifestyle Online
I think I can remember you showing me how to turn cartwheels on the beach," said my younger son, Tom. "When your legs worked, before you were poorly." Hearts don't break, but sometimes it feels as if they crack a little. I've been a parent for longer than I've been disabled. My illness started when my younger son was three, and by the time he was six I was bedbound.

Despite being very ill and feeling that it couldn't get much worse, I continued to deteriorate for a further 12 months, until I reached rock bottom.

I was incontinent, unable to feed myself or sit up at all. Tom is now 11 and I have improved to the point where I can sit up and eat unaided. I manage the loo by myself most of the time and occasionally get out of bed for a few minutes. However, I am now facing the fact that my illness (ME) appears to be both severe and chronic.

In common with most people who face this kind of illness I see-saw wildly from hope to despair, through all the stages in between. When I despair and look at my life, all I can see is my inability to do the routine things that most people take for granted, the long hours of feeling too ill to do anything, even listening to the radio, and the unhappiness that this generates. Then I have fantasies about two things: being well or being dead.

The first appears little more than a small glow on the horizon; the second is not an option I personally would take because I believe, to paraphrase a common slogan, that children are for life and not just for Christmas. No matter how ill or disabled I am, no matter how independent my kids become, I am still the mother of two lads and they need me: not to do things for them, those days are long gone, they need me just to be here, to be their mother.

And when I have what I refer to as "a bad do" (roughly every 10 to 14 days), when I spend 24 hours semiconscious, doped up on Stemitil and Morphine, lying in the dark, vomiting into a bucket and crying with pain - they still need me.

They creep in and lie on the bed for a few minutes saying very little except, "Luv you Mum."

For much of my life all I can give them is my presence, my love and my time - time to listen, time to talk, time for laugh, time to cry, time to just be around each other sharing our lives and hopefully sorting out problems as they occur. My job as a parent hasn't changed since I became disabled, it's just the way I do the job that's changed.

I've always felt that my prime objective is to bring the lads up to be able to cope with life and all it throws at you, and that's still what I'm doing when I give them my presence, my time and, most of all, my love.

We are in the very fortunate position at present of my husband being in a reasonably well paid job, and so we spend practically all my disability benefit on employing help in the home. This helps in two ways: firstly the house is cleaned - the washing, ironing and gardening are done on a regular basis, making everything run more smoothly and creating less stress for everyone. Secondly it frees up my husband in the evenings and at weekends to be the active parent, giving the lads his time, taking them to buy trainers, playing football, taxiing them to their social lives, playing chess and so on.

We don't do all this so that our sons have no responsibilities or because we think they are unable to perform household jobs. We do it so that they don't have too many regular jobs; too much responsibility too soon. All children have a right to a childhood.

When Mike has to go abroad on business, the lads really respond to the challenge. The elder, 15-year-old Jim, takes on locking up the house, checking that everything's switched off, as well as feeding me, filling hot water bottles, and other vital tasks before and after school. We employ teenagers in the school holidays to take Tom out swimming, to the pictures, bowling, to the park and mooching round the shops; all the things I'd normally have done.

We also aim for Mike and the boys to go away on holiday a couple of times, leaving me to the mercies of the social service department. It's hard: waving goodbye is the hardest thing in the world. We all cry. It hurts like hell, especially when social services get their wires crossed and the help doesn't come - but it seems to be worth it. They get a rest from the relentless round of caring for me, and the refreshment that comes from seeing different places and doing different things.

Our aim is to have a normal a life as possible for our family. Both lads bring home lots of friends, some of whom cope better with our situation than others - which can be said of adults as well. Some of their mates come and sit on my bed and talk. Some shuffle embarressedly in the doorway. Others merely grunt from the top of the stairs. I asked Jim one day, now that he's into his more sensitive teenage years, if I embarrassed him by being disabled. "Course not," he said. "You're ma mum. You just embarrass me, full stop."

From `Bigger than the Sky: Disabled Women on Parenting', edited by Michele Wates and Rowen Jade, published on 8 April by The Women's Press Ltd, pounds 8.99.

`THINGS AREN'T THAT DIFFERENT REALLY'

I'm used to mum being the way she is because she was diagnosed when I was really young. Things aren't that different for us than any other family really, except I help out a bit more around the house, do odd jobs and I make mum cups of tea. I also put a wheat bag in the microwave for her. You leave it in there for three minutes and it takes the pain out of her neck. My dad does the most jobs, though.

I go to school, and mum will sleep in the afternoon. Then when we get home, we'll play games with her, talk about the day and make more cups of tea.

I don't really talk to my friends about my mum, and I don't talk to my brother about it at all. It's probably a boy thing.

I don't feel happy about mum not being well - but I take things day by day and try not to think about the future too much. It feels a bit strange sometimes because other mums make tea and go out and stuff, and mum can't. I wish that she could. But she's great anyway.

Tom Firth, aged 11

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