Creative approach to parenting

Nearly eight years ago I had a massive stroke on Christmas Day (of all days!) at the age of 29.

Implications of stroke

Until then, I had no idea what a stroke was – it was just a word that I associated with elderly people. So when I regained consciousness, I had to ask a doctor to explain what 'having a stroke' meant. I now realise that strokes are in fact quite common in younger people.

Until I had my stroke, I had also believed that I would have children when the time was right (especially as I'm one of eight children). However, once I had recovered from the initial effects of the stroke, I was told that it was unlikely I would ever have children, as the risk of a further stroke during pregnancy was so high because of rising oestrogen levels and higher blood pressure.

Recovery: seven years on

My recovery level seven years on was like this: my left arm was still paralysed, with no movement at all from my shoulder down. My left leg had limited movement and a lot of weakness but I could bear weight through it and walk short distances, even though it meant some pain, a lot of effort and sometimes sheer exhaustion. But I refused to think of myself as a stroke 'victim'. I believed then - and still believe now - that you are only a 'victim' if you choose to be. OK, I am disabled. But I have fought really hard to get where I am today and am proud of my achievements. Until recently I was doing voluntary work for my local hospital and I have also passed my driving test, with the help of an instructor who teaches disabled people to drive.

Determined to be a mother

About the same time, I also found out I was pregnant by my fiancé, Russell, who is also my carer. This both scared and excited me, but I was determined that I could do this and realise my dreams of being a mother, even if it meant being a disabled mother. I would not of course recommend anyone to disregard medical advice: I knew there were risks involved, and I did have several health scares during my pregnancy.

But in April last year I gave birth to a beautiful baby boy called Curtis.

I very nearly did not survive the delivery and our son had to be delivered by emergency caesarean section, which meant I could not bend over or pick up anything heavy for some time.

Although Curtis arrived early and was light at first, he soon gained weight and became heavier and harder to pick up.

Experimenting and bonding

I was not prepared for how inadequate and disappointed I would feel when I couldn't bathe him as I wanted to, or lift him in the air with two hands and hear him squeal with delight, as he did with his father. I had similar feelings when I struggled to dress him or change his nappy and, for a while, I felt he was bonding more with his father than with me.

But there was sheer joy in being a mother. There were times when he needed me, even just for a cuddle, and I was glad that I could reassure him and feed him with one arm. I used to feed Curtis on the bed using a V-shaped pillow. When he got bigger I put him in a car seat or pushchair and sat on the sofa with him in front of me. I used a Huggababy sling when he was little which was quite easy to manage. Some other slings proved less useful, because you still need to support the child with one hand, so you can't get on with other things.

I found the Gracco Quattro pushchair very helpful. It is quite expensive but worth it because it is easy to fold (you just twist the handle), can recline the back using one hand (just pull the back up), and has one handle across the back which makes steering easier.

Creative approach

Russell also helped me feel more included. He has always been creative and interested in building things, and he came up with the idea of a changing unit that fitted over our son's cot, so that I don't have to bend over. Curtis is held safely and securely on the changing unit surface with Velcro straps that I can easily fasten and adjust with one hand. And so my connection with our son started to increase and I looked forward (unbelievably sometimes) to changing his nappies, even the worst ones, because I suddenly found I could do this small task that other, more able bodied people, try to avoid and sometimes find offensive.

It takes me a little longer to do things and therefore I have to allow more time, but everything got better and easier with practice. For example, I learned to do up harnesses and poppers one-handed and now I automatically do everything one-handed. It's not a big issue. Curtis has adapted well: he accepts that his mum might just take a bit longer to get to him if he's crying or whatever. My main message is: don't give up or feel disheartened _ you will get there.

Russell has now had his changing unit design patented, and is hoping to get it made commercially, available hopefully within the next year. We both hope it will help others in a similar situation to ours. Please contact DPPi for more information about the changing unit.

Editor's note: Since this article was written Russell has told us that a changing unit, of a similar design to the one he had patented, is available from Additions Direct catalogue. Tel: 0845 306 0005. Website: www.additionsdirect.co.uk

First published in Disability, Pregnancy & Parenthood international, Issue 47, Summer 2004.